A rewind back into the pandemic days, up until last year. <3 

April 1 2020

hi, I’m colleen! i’ve been sick w. POTS, CFS/ME, & a few other illnesses for about 8 years now. I’ve recently been finding a lot of encouragement, comfort and peace in the chronic illness community on Instagram, & am hoping to become more of a part of it. I wrote for ThoughtCatalog and The Mighty, & am actually in the process of writing a book! Is definitely been a slow process (brain fog, fatigue & adhd tend to add to this 🤷🏼‍♀️) but I’m hesitantly getting excited about it! Other things… 💟 I’m 28 years old 💟 I have a 4 year old maltipoo named Leo (who has chronic anxiety 😩) 💟 I’m plant-based / vegan (bc I love the creatures) 💟 I LOVE podcasts & also audible (these have been serious life savers w. being alone so much during the day) 💟 I work for an autism organization & have met so many beautiful souls through my work 💟 I love doodling, crafting, & anything artsy 🤍🤍🤍I’m looking forward to meeting new people! ☺️

April 9 2020

Maybe my best life isn’t going to look like the lives of my “healthy” friends. Maybe it’s not going to be as adventurous or as full of spontaneity. Maybe it will involve a lot more doctors appointments, a lot more lab work appointments, and a lot more pills. Maybe it will involve a part-time job rather than full-time. Or maybe, at times, no job at all. Maybe I won’t be able to go camping or hiking or white water rafting with my best friends. Maybe I will miss out on happy hours with coworkers after work. Maybe I won’t be able to sit out by the pool in the summer in the bikini when it’s inevitably too hot out. Maybe I’ll spend a little more time than others sitting in the living room on my couch, trying to watch Netflix. Maybe I’ll feel a little bit more lonely. Maybe I’ll miss out on a lot. Maybe I’ll have to make “No” a bigger part of my vocabulary. And you know what? Maybe It’s time for me to finally accept this.

Because I’m beginning to realize that perhaps my sick life will still be good, just in a different way than I expected. Maybe I’ll value relationships more and become a more compassionate human being. Maybe I’ll have a greater understanding of joy, and a greater ability to feel this joy. Maybe I’ll learn how to love myself, even if takes a little while or a long while.

After eight years of fighting this illness, eight years of frustration and fatigue, eight years of feeling emotionally drained, I finally have realized that it’s time for me to be on my body’s side. It’s finally time to say hello to the chronically ill version of me, and to invite her into my life with warmth and compassion. It’s finally time for me to be on my body’s team. 💟

April 10, 2020

During the first few years of my illness, I faced a lot of resistance. Healing wasn’t even a consideration, as I believed that healing was synonymous with getting better (physically), which I had been told was “statistically unlikely” for me. When it started to sink in that this illness was going to be a part of my life for the long term, I lost hope. I was angry with my body, and with my life. I didn’t have faith that I could live happily so long as this illness would be a part of my life. I spent many nights tossing and turning, with little to no sleep. I felt dizzy and sick and down 99% of the time. When my symptoms flared up, I automatically felt even lower and more emotional. At the time, I wasn’t open to finding joy. I wasn’t aware that joy existed in this new world. The idea of hurt and happiness co-existing was a concept I couldn’t even begin to grasp. It wasn’t until I started to come to terms with my illness, until I started to accept that it was a part of my life that I couldn’t change, that I was able to get through some of the tears and darkness. I couldn’t see the light until I faced the darkness. And little by little, I learned that I had to trust the process. I had to tell myself that each of these long days meant something, that each of these days I was growing, even if I couldn’t see it. Because the truth was, as I started to work on being on my body’s team, rather than constantly fighting my body, I became more alive. And this is when I realized that I was ready to live again. This is when I realized that even though I was dizzy and tired, fatigued and sick, life was still worth living. 🌤🌤🌤

April 11, 2020

My priority used to be to “get better”… to “heal” physically. But then I realized that putting all of my hopes into getting healthy again was only hurting me. Because realistically, I don’t know if I will ever heal. I don’t know if my body will ever be able to withstand gravity, or if my heart will ever maintain a “normal” pace. I don’t know if my stomach will ever feel completely comfortable, or if the dizziness or fatigue will ever go away. I don’t know what my health will look like in the future. And if I continued to wait for the “some day” when I would be magically better, I would always be thinking of my life as not good enough. It would always be temporary, like I was always waiting for a life that would be “better.” I would never learn how to live at peace with my body. And I realized that I didn’t want to count on my illness healing, because I wanted to be able to be okay, even if I would never fully heal.

So now, while of course I am still the first to seek out second and third and fourth (and hundredth) opinions, getting “healthy” is no longer my sole purpose in life. Instead of waiting and waiting for my body to heal, I am slowly learning to make the most of the now, even if it’s different than I expected. And it is different than expected. It’s not quite as extravagant or wild or crazy…and it’s a little slower…a little less monumental, and a lot more exhausting. But it is my life, and it’s still full of beauty. It’s still packed with precious moment and people that I cherish everyday. So I will continue to find joy and happiness in this life, even admits the pain and the discomfort. Instead of putting all of my hopes into healing my body, I am choosing to invest my energy into healing my heart and soul. 🤍🤍🤍

April 13, 2020

I recently told a friend about a new medication I was starting to hopefully ease my fatigue. Her response was, “my grandfather was also on too many drugs, so the hospital took him off all of his medications and he didn’t get any worse. All of the drugs were probably just messing with him.” This comment stung, as to me, she was implying I was on “too many” drugs and that I didn’t need them. But the truth is, I have paid close attention to how I feel when I start new medications, and I have even experimented with weaning off of them for trial periods at times to ensure they are helping me. I am the first to admit that Western medicine has saved my life, and the quality of my life. However, this doesn’t negate the fact that no one actually wants to be on eight different drugs. No one wants to manage their medications and feel like they are only able to function because of the little yellow and white pills they take throughout the day. But it’s not really a choice if we want to live the best we can with our illnesses.

Sometimes people don’t realize that not taking medications is a privilege. They don’t receive texts every few days or every week from CVS telling them their medication is ready for pickup. They don’t have to spend time each week sorting their pills into a pill container that has 28 little sections. They don’t have to pack bottles of pills and supplements whenever they go on vacation, even if only for one night. They don’t have to manage the side effects, like bloating, nausea, or weight gain or loss. They don’t have to worry about feeling self conscious when taking a handful of pills in front of their friends. I am not intending to put down other people, as they may not have the experience that would lead to them understanding chronic illness. Medication shaming is unfortunately just a very real and far too prevalent thing.

But despite the shaming or the judgmental expressions or comments we may face, we never need to feel insecure about taking medications. Instead, we can educate others. We certainly do not need to defend taking medications, but if and when we are comfortable, we can explain why we need them, if we so choose. We can have the courage to take a handful of pills in public without feeling ashamed. 💊

Modern medicine exists for a reason: to help us all reach our full capacity in life. Some of us are lucky and do not need medications, or just need one or two drugs. But some of us truly do need to take medications, and there is absolutely no shame in it. Taking medication is never a weakness, and we never need to feel insecure or ashamed of it. When we find meds that help us, we should be excited and relieved! 💊

Medications can be life changing, and I just hope the people who are closest to us can practice compassion and try their best to understand why we do in fact often need our pills. 💊

April 15, 2020

 slept from about 12:30 am to 4:00 am last night. I’ve been very sick the past 4 weeks or so (the whole time we’ve been in “quarantine”), with many of my “normal” symptoms flaring up, and then other newer symptoms deciding to show up in my life. For a while, I thought I was making some progress, and feeling a bit better. Deep down I know everything comes in waves, and flare ups and symptom changes don’t negate the progress we have made. And to be honest, more of the progress I have made has been in my mindset than in my body. However, last night was an “insomnia night,” which means today I am definitely not at my “chronic illness best.” The exhaustion has been wearing down on me (since 4 am when I woke up), and in this fatigued, disoriented space (in which my pulse is currently 157), I question whether or not I have grown at all through all of this. But then I was looking through some old quotes I had saved, and was thinking about how growth isn’t always visible, and how having one or two or five or twenty particularly “bad” does not mean we are regressing, or that our progress has been stunted.

Sometimes growth is quiet and subtle, and doesn’t look quite as profound as we may have imagined. Sometimes growth is simply looking at a situation from a new perspective, and realizing that we don’t have to be so hard on ourselves. Sometimes growth is just continuing to move forward when uncertainty is trying to hold us back. And sometimes growth just means making it through each day, and noticing one small good thing about the world each night before we fall asleep. The truth is, some seasons are for taking leaps and bounds towards a dream or a goal, while other seasons are simply meant for surviving. They are for meant for just being. And these survival seasons are just important. These survival days are the days that we show the world and ourselves how remarkably brave we are. And I think these days should be celebrated just as much.

So please, be proud of yourself. I’ll work on the same. 💟

April 17, 2020

I find that sometimes it’s really difficult to not let my physical symptoms and experiences dictate my mood. Like yesterday. Yesterday was a really brain fogged☁️ day for me, and brain fog is a symptom that I find to be pretty emotionally triggering. I think some of the hardest days I have faced in the past few years have been the days when I’ve felt brain fogged, dizzy, and disoriented. And I’m noticing that I think I have almost conditioned myself to believe that brain fog automatically = a bad day (both mentally and physically). I’ve taught myself that when I feel brain fogged, I will feel low and hopeless, because this is what has happened before. And I understand how I reached this conclusion – it’s isolating and confusing to feel like there’s a space between you and reality, and it’s lonely when you can’t fully engage with the world. ☁️

But something I’m working on is separating my symptoms from my emotions. I’m not blaming myself for feeling down or for struggling with my mental health during the hard days, but I am trying to take a step back, and realize that flare ups days don’t have to equate to negative thoughts or downward spirals. I’m realizing that I can still have good days, even when my symptoms are flaring. I think what I need to focus on is observing my feelings, rather than getting swept up in them. 🌤

Though a lot of yesterday was pretty tough, I was able to get out for a walk by the river with my pup and sister. And despite my tired body and jumbled mind, the river and the fresh air ended up really lifting my spirits. I still felt low and a tad anxious, but I was able to breathe in and see that the world is still beautiful, even when things are hard.

I think sometimes I’m too quick to jump to extremes – that a day is either good or bad. That a feeling is either negative or positive. Either / or. But I’m learning that we can have really positive moments even on the hardest dates, and we can still have good days even if we experience some feelings of sadness or hopelessness, or feelings of physical pain or discomfort. 

We can experience two seemingly opposite emotions or feelings simultaneously, and neither feeling is wrong. ☁️☀️

I guess it’s just about remembering that little pockets of joy still exist, even on the hard days. We just have to look for them. 🌤

April 20, 2020

Hearing about other people’s exercise routines has always been majorly triggering for me. I want to be able to support my friends, and hear about their fitness success, but it always reminds me of just another (big) thing I lost with my illness. Before this all started, I was a runner & dancer, and loved feeling fit & strong. I could depend on running whenever my mind was whirling or when I had restless energy. ⚡️It felt like freedom. Ironically, one of the first symptoms that signified something was very wrong was my loss of the ability to run. I really had to grieve the loss of running, & grieve it more than once throughout the years.

Today, I am grateful for my body on the days when I can take walks. 🌤I’ve had it suggested (more than once) that I should do “gentle yoga” as it’s “barely even a workout,” but for me, sun salutations are accompanied by black in spots in my vision and verrrry uncomfortable, shaky legs and arms. ☁️ & yet, i’ve tried taking yoga and pilates classes so many times, each time thinking that maybe my body can handle it now. But I just wind up feeling defeated, insecure, & frustrated all over again. 🤷🏼‍♀️

It hasn’t been an easy pill to swallow, 💊but I’m slowly realizing that no matter how hard I push my body, it’s no longer built for these types of exercise. No matter how hard I train, I’m not going to be able to run a 10k ((at least not in the foreseeable future)), & I’m not going to be able to take a barre or pilates class without feeling sick, nauseous, and on the verge of fainting. 🌪

And what I’m realizing is that maybe it’s time to finally work on letting go of these aspirations, these unreachable “goals,” and to instead begin listening to my body…paying attention to what my body needs and craves. Paying attention to what actually feels good, without trying to burn x amount of calories or “sculpt” my abs. ⏹

Maybe some days I can do some stretching on the floor, simply because it feels good, and allows me to connect with my body & care for my body. ✨ Maybe on good days, I can take a long walk outside and enjoy the vitamin d. ☀️ And maybe some days, I can dance around the kitchen with joy, even if it’s only for a minute or two. 🌟I want to begin practicing wellness in a way that serves me – a way that enhances my wellbeing, and doesn’t make me feel bad. I don’t need to continue comparing my wellness practices to those of my friends or to runners that pass me outside. I don’t need to compare their bodies to mine & I certainly don’t need to shoot for the same goals as them. Because I’m a different person, living in a different body, with a different situation. And trying & trying to move my body in ways that make me feel sick and weak isn’t really self-care, is it?

I can be in support of others in their wellness endeavors, while also realizing that I don’t have the same situation as them… & I can choose to decide that this is okay. ✅ Wellness for me is not going to look like wellness for someone “healthy.” And while I can’t change what my body can do, I can change how I relate and connect to it.  I know accepting this is going to be an ongoing process, but this is me setting the intention to practice embracing my body for what it can do, rather than putting it down for what it can’t do. 🌈

April 22, 2020

I keep reading articles and seeing posts on insta reassuring people that it’s okay if they aren’t productive during this time. & It’s usually followed by “because we are in a global pandemic.” I don’t disagree with this. But for me & probably for you- this sort of takes on a whole new meaning. The classic dictionary definition of productive is “having the power of producing or generating / getting things done / etc.” Basically, right now, everyone is seeking permission to not be productive…they are trying super hard to reassure themselves that it’s okay if they aren’t productive. ⚡️

The world is a scary & sad place right now, and most of us are experiencing some form of anxiety, pain, or grief on and off as things progress and change.  Of course it’s not a time to be 1000% “productive” (by dictionary def.) ☁️

The thing is though, chronic illness has taught me to view productivity through a whole new lens that differs from how people are talking about it now.  I used to view it how the rest of the healthy world is viewing it now – marking tasks off of a checklist ✅ valuing efficiency ⚡️& making the very “most” of my time. But over the years, I’ve been able to completely reframe this word in my mind. 🌖

During the long periods of time I’ve spent at home sick, I’ve often put (too much) pressure on myself to accomplish things,  even though I physically couldn’t. 🙅🏻‍♀️ & when I failed, I would feel let down & angry at myself for wasting time.

But I’ve slowly come to realize that productivity doesn’t need to mean producing something, or getting something done. Productive can simply mean surviving a day, taking up space , or listening to your thoughts. 🌥Productivity can mean reading a book, painting something beautiful, or listening to Ed Sheeran. It doesn’t always need to involve efficiency, or creating something concrete every second of every day. 🌤

In retrospect, during some my hardest, darkest, “survival days,” I now realize that I was growing -I was learning how to cope & heal. I was living – and this was more than enough.

Chronic illness has slowly (& painfully, at times) taught me how to be okay with not always  getting something done, or creating something tangible. I won’t deny it – It does make me a bit anxious when I hear people talking about allowing themselves to be unproductive – because it stirs up some of my old beliefs about productivity.

But perhaps this is a time the rest of the world can learn something from those of us with chronic illness. Hopefully they are able to practice compassion with themselves … & gentleness. Hopefully they will discover that being productive can actually just mean healing & surviving…enjoying life or resting…even daydreaming. 🌥Hopefully through all of this, they can realize that this is plenty. Just getting through is more than enough. ❤️

April 24, 2020

Some days you may not be able to show up in the ways that you had hoped. Some days you may not be able to be present, no matter how hard you try, or how hard you push yourself. Some days you may not be able to smile a genuine smile that reaches your eyes. Some days your eyes will have dark bags under them, and your cheeks will be less rosy. And some days you might not have anything to say to anyone because your soul is so heavy and your body is so fatigued. ☁️✨

And on these days, rather than trying to push through the pain, or force a smile or fake a laugh, I hope you can nurture yourself and do whatever you need. I hope you know that it’s okay to just be you. the you who is feeling down. the you who is tired or in pain. The you who doesn’t have it in her to get out of bed or to face the world. ☁️✨

On these days, I hope you know that it’s okay if you can’t show up fully, or if you can’t show up at all. it’s okay if you can’t fathom up the energy to be present with a friend or a parent, or even with your own thoughts. It’s okay to feel worn out and tired. It’s okay to sink into the exhaustion, even if it brings some sadness with it. It’s okay to just have a day.

Please do not blame yourself for not feeling good. Instead, take gentle care of your body and your mind. Approach them with kindness and compassion. And please don’t feel bad. You’re doing the best you can. And that’s more than enough. 💚

April 25, 2020

For the longest time, I felt like my body had let me down. No matter what I did, I couldn’t turn my body into the body that I so desperately wanted. I resented it for being sick, and I resented it for looking different than I would have liked. But only recently have I been able to explore how gratitude can apply to both my life and my body. Even on days when I can’t seem to love my body, I can still be thankful for all that it does for me. I’ve realized that even if my body looks and functions differently than how I expected, my body knows best, and when I fight it, I only wind up feeling sicker. ✨

We can’t always choose how our bodies look or how they function, but we can choose what we decide to believe about our bodies. We can choose how we talk to our bodies, and how we nurture and nourish our bodies. It’s beautiful if we can love and celebrate our bodies, but it’s more important if we can value who we are as people, and know that our bodies are only secondary. ✨

Some days it’s going to be more difficult than other days to treat our bodies kindly and with compassion. & on those days, we need to remind ourselves that we all deserve to feel at home in our bodies. We all deserve this sense of peace. Even though our bodies may change due to illness, and even though they may limit us in some ways, it doesn’t mean that they are any more inferior or any less lovable. ✨

I know it doesn’t always feel this way, but the truth is, our bodies are fighting for us and supporting us every second of every day. they are on our side. I think if we can appreciate our bodies and be grateful for them, no matter what phase they are in, living will become a little bit cozier. life will become a little easier. ✨

our bodies are living, breathing miracles. and I hope we can learn to see them as such. 🌟

April 27, 2020

“Be gentle with yourself, you’re doing the best you can”
I think “the best you can” looks different everyday (& every moment) It def doesn’t mean pushing your mind or your body to the breaking point, or anywhere near. It means practicing kindness in accepting how the day goes, even if it’s different than how you planned. & I think it means searching for one little pocket of joy or one little sparkly gem in the day that you are grateful for, bc I think noticing this one special light will brings you some peace & comfort & and hopefully make you feel 10% happier 🌼

April 30, 2020

P E R S P E C T I V E S 🌙

(little lessons i’m working on)

✨embracing the cozy feeling of freedom, rather than always chasing meaning & purpose

✨observing & approaching thoughts with curiosity, rather than with judgment

✨questioning what negative feelings are trying to communicate to me, rather than pushing them down out of fear

✨asking myself what i need, from moment to moment & doing my best to honor these needs (without labeling them as wrong or unwarranted) ✨keeping the door open to possibilities, rather than placing preconceived limitations on my life (mantra – “perhaps not now, but maybe one day soon”)

✨remembering that healing doesn’t always look like healing & that sometimes healing looks a lot like surviving

✨knowing that every feeling is fleeting, and that “this too shall pass” ✨being appreciative of the good moments, rather than fearing when they will end ✨embracing flexibility with expectations, thoughts & routines, & knowing that needs change from day to day and hour to hour ✨noticing immediate & automatic reactions, and intentionally creating a pause between an occurrence and my response ✨making space for joy & noticing bits of joy even in dark moments ✨ knowing that discomfort (in the world or in my body) can coexist with inner peace

✨✨✨

May 1, 2020

“Be Kind to Your Mind”

This gentle, beautiful little reminder seemed to stir something inside of me and had me thinking. I often think about how I can take care of my body, or what my body needs at each moment. When my stomach hurts, I use a heating pack, or take a peppermint capsule. When my heart is pounding, I lie down on the couch, or lie with my legs up against the wall to find a little relief. When my head is hurting, I wrap my special ice pack around my head (or I sometimes take a med). Even though I’m very far from perfect when it comes to responding to all of my body’s needs and requests, for the most part, I do try my best to figure out how I can bring it some comfort, or how I can ease the discomfort.🌱

Something that is a little bit less intuitive for me is giving this same comfort & care to my mind. 🌱Sometimes, when i listen to my body and pause or rest, I can’t help but spiral into thinking that I am “wasting” my day or week, or that I am “giving in” when I should be pushing myself through. I allow my mind to experience feelings of guilt and shame, and my mood begins to become more sullen. I guess you could say that my mind has this innate tendency to be my own greatest critic (& my biggest bully).

Shaming my body for needing rest or needing to take breaks doesn’t add value to my life. Truth be told, it only takes away joy & makes this life that much more difficult. 🌱

I cannot blame myself for experiencing emotions or feeling so many feelings, but I can try my hardest to accept the feelings that are helpful & healing, while challenging the feelings that come from a lacking mindset, or that are harmful in nature. 🌱

My intention moving forward is to take better care of my mind, to treat it with kindness and compassion, and to nurture the cozy and caring thoughts. We experience this world through our unique & special minds, so the most healing thing we can do in this world is to treat them with kindness. 🌱🌱🌱

May 3, 2020

Sometimes it’s actually the good days that test us our minds and thoughts the most, because they offer us a glimpse into what life might be like if we were (even a little bit) better (or more “healed”). 🌥

Yet, these good days can feel like they are teasing us, or leading us to believe false promises. Because the little voice reminds us that this energy is fleeting & it probably won’t last forever. It’s difficult to have these very hopeful days & simultaneously know that we can’t hold on to the moment forever. We can’t make the feeling last. ☁️

🌥However….

I think these good days & moments of light are so beautifully special because they remind us of why we keep moving forward each day,  with such grace & gentleness. They remind us of how resilient and courageous we are. They remind us that life is still full of so much goodness & that we still have so much to be thankful for. ⛅️

And when the harder days do come, we can hold onto this courage & we can endure, and make it through, knowing that there is still space for joy and space.

🌦

And eventually, we learn how to find “goodness” & peace even during the flare ups & during harder days. And in time, we learn how to blend the hard days with the softer days, so the hard days aren’t quite so difficult. And in time we begin to see that even in the dark. there is plenty of space for light. ✨✨✨

May 5, 2020

“Hope is Essential”

Hope is essential…& hope is also scary, because of the fear of being let down. the fear of getting our hopes up and then having them crushed. it’s so difficult to invest in hope when we don’t really know what hope “looks” like. 🌿

I used to put my hope into healing & getting “better” – into new treatments & cures. & while I do feel very hopeful that science & medicine can do wonders, I also know that I need to have some hope that is not based on something tangible or concrete… & a hope that is within our control.🌿 The kind of hope that we can put our faith into is the resilient hope that grows within us…. 🌿the hope that we have the courage to make it through each day 🌿the hope that we will view obstacles as reroutes & that we can accept when life changes course 🌿the hope that we will find contentment & joy, even if some days are heavy and our bodies are tired. That goodness will still be abundant 🌿the hope that each tomorrow can bring with it a better day 🌱🌱🌱 🌿and when just “being” is hard & you can’t seem to find hope, my hope is that you can still find something, no matter how small, to have faith in. to remind you that hope is still there, even if you can’t feel it. 🌸

because hope always exists. 🌸

hope always returns. 🌿

May 7, 2020

“Just because someone carries it well doesn’t mean it isn’t heavy.”

✨To me, this perfectly sums up the invisible nature of “invisible” illnesses. Sometimes it feels like we are living two different lives – the life we experience from inside of our own body (the fatigue, the headaches, the feverish feeling) , & the life others see from outside of us (in which we look “fine”) ☁️I know that I often try to look fine. I try to keep my illness invisible and carry the weight on my own, because I sometimes think this will make life easier. ☁️But sometimes it gets hard to do it all on our own.  And sometimes all we want is someone to be there and sit through it with us, or to acknowledge that they love us and are here for us, even if they don’t fully understand. ✨On a trip a year ago, one of my closest friends said something that really warmed my heart. She knew I was struggling and she said “I don’t always know what to do or what to say or how to help you &  I’m sorry that sometimes I don’t do anything. If you can tell me what you need, or what I can do to support you, I will do whatever it is! So please tell me what you need and I’m here.”

✨These words brought me so much comfort because she was showing up for me and showing me that she cared. She acknowledged that she didn’t entirely know how to help, but she wanted to. And the fact that she wanted to help made me feel so grateful and so much less alone. Her kindness touched me & showed me that even if others can’t always fully understand, they can still love us & they can still carry some of the weight for us if we let them. ✨

May 10, 2020

“Do What you Can, When you Can” 

▫️Something I’ve been working on is replacing “do the best you can,” with “do what you can when you can.” even though ive been sick for a while, I’ve noticed that i still spend too much time living in the “should” space – telling myself that I “should” be doing more or accomplishing more. Or that I “should” be constantly working towards “healing” or growing. ▪️But sometimes these shoulds come at the detriment of my body. I try to do more, and wind up extremely sick. Or, when my body prevents me from accomplishing more, my emotional health suffers & i feel like ive failed, or let myself down again. 

It doesn’t make sense to continue to live in this perfectionist “should” space. It’s a heavy weight to bear, and it no longer serves me.

▫️the truth is, some days, we can’t really show up as our best. Or, our best looks different. Our bodies only allow us to show up partially. And perhaps this is okay.  Perhaps we can strive for grace, rather than perfection. ▪️Perhaps living and breathing is more than enough, and anything additional is just an additional gold star. ▫️I’m going to begin giving myself more grace and more permission to just be. Even on days when perhaps I “could” do more, it’s also okay if I watch netflix or listen to podcasts or scroll mindlessly on my phone.  It’s okay to not be constantly in motion.

▪️I hope you can give yourself some grace too. I hope you, too, can realize that doing whatever you can today is enough – that it’s plenty. ▪️💙▫️

May 13, 2020

My body decided that ‪4 am‬ was a good wake up time today (& yesterday, & the day before yesterday). 🤦🏼‍♀️ Despite the exhaustion & the dark bags forming under my eyes, I just can’t seem to convince my body to please sleep for a just a few more hours. 🌕🌗

I’m doing all of the “things” – I put my noisemaker on low, I dim the lighting in my room early & begin winding down little by little, I listen to a calming podcast,  I diffuse some lavender into the air & I eventually cozy up with my weighted blanket and pup. 🌗 despite this cozy calming atmosphere I try to create, my body just won’t seem to fully knock itself out. I fall asleep very briefly & then am back up wide awake within a matter of hours.

🌕I’m trying to give myself some grace & not put too much pressure on these very exhausted (& dizzy/lightheaded) days. I’m trying to allow the feelings of frustration surrounding my insomnia pass through, rather than dwelling on them or letting them fully bring me down. 🌓But if anything, this is just another reminder that our bodies are not entirely in our control. Even if we  do all of the so called “right” things, we still may not get the desired symptom relief.  Even if we rest, hydrate, take our meds, lie down, stretch, use ice packs, take our supplements, or eat in a special way, we still may not feel any better. 🌘🌑

🌕And It’s hard & it’s heavy to feel like we put SO much into caring for our bodies without seeing any results or getting any relief. But i’m realizing that even if we don’t always feel better when we do the “right” things, maybe there’s still value and importance in doing them. 🌒Maybe by doing what we can to support our health, we strengthen the relationship we have with our bodies and learn to see our bodies as valuable. Maybe by supporting our bodies & by treating them with kindness, we are creating a more nurturing and compassionate relationship with ourselves. 🌗 i think if we look at it this way, we might realize that despite our symptoms, we actually still are healing, perhaps just in a different way than we expected. 🌖

May 15, 2020

“Soften your Expectations”

I’ve been thinking a lot about expectations, and the role expectations play in our mental and physical wellbeing. Before becoming sick, I thought that accomplishing goals and meeting high expectations were required for my life to be meaningful. 🌱 When I didn’t meet my expectations, I felt ashamed – I felt like I had failed. This was anything from getting good grades in school,  to being more social (and less shy), to running a certain number of miles on the treadmill.  I felt bad about myself when I didn’t speak up in groups, or when I said the wrong thing. I felt disappointed in myself when I didn’t get the grade I had hoped for on a test. I often felt like I was failing, when really, I was just doing my best. I never credited myself for the good things I was doing, the smaller, but even more meaningful things. 🍃

With a chronic illness, I’m slowly realizing that it’s reaching all of these (sometimes unattainable) life expectations is not what will make my life meaningful. It’s taken me a lot of let downs and “failures” (that were not actually failures) to begin to realize that this mindset was no longer a mindset I could live with, if I wanted to be happy in any way. Because physically, I couldn’t do many of the things I used to do. I couldn’t reach the same accomplishments. And sometimes, there have even been expectations that maybe I “could” reach, but that wouldn’t wind up being beneficial for either my mental or physical health. 🍃

Little by little I’m starting to see that productivity doesn’t make my life any more or less valuable. What makes this life meaningful is that I find joy and compassion in it. 🌿 It’s about the relationships with people who make me feel good, and who allow me to be myself around them. It’s about the hobbies that I love to do, and not at all about reaching “perfection” in these hobbies. It’s about making expectations centered around fulfillment, rather than expectations that look like constantly striving to be better.

I guess I’m softening my own beliefs to the understanding that a meaningful life is a life centered around purpose, rather than productivity,, with the purpose being finding happiness (or “okayness” if this is more attainable). 🍃 little by little I am realizing that it’s okay to soften my expectations and to work on making choices that make me feel good and whole and that allow me to care for and love both myself and others. 

It’s no longer about achievements, and more about finding peace. 🌿

May 17, 2020

💫It wouldn’t be entirely truthful if I were to say that I am 100% thankful for this illness. I am not thankful for the physical symptoms – the exhaustion, the headaches, the nausea,  the stomachaches, the palpitations, or the dizziness. I am not thankful for the emotional “symptoms” –  the loneliness, the heartbreaks, or the losses. I miss many aspects of my healthy life. I miss the energy, more than anything else. I miss the ability to run. I miss the days when walking felt refreshing. I miss the days when going to  the beach felt good. And I miss some of the people from my old life who were unable to understand my “new” life. 🌙

Yet, despite the many losses and many trials, I still do hold an immense amount of gratitude in my heart for the many gifts this illness has brought me.  I’m grateful for the beautiful friendships and relationships this illness has gifted me. I am grateful for the friends who have been by my side, and the new friends I have become close to.  I’m grateful for my appreciation for the little things, that previously may have passed me by. I’m grateful that the hard times have sparked resilience, and optimism within me. ✨ I’m grateful for the new hobbies and curiosity that have resulted from the hours spent at home.  I’m grateful for the compassion this condition has gifted me, and for my ability to understand the sensitivities, pains, & joys of others. ✨

Sometimes it’s easy to feel let down by this life, and to feel as though the goodness will never outweigh the hard and painful parts of this life. That a healthy life would have been a better life.  But perhaps i don’t have to think of these two lives as better or worse. 🌙 Maybe I can settle with “different.” Maybe I don’t need to compare my life now to what it could have been. Because maybe it is just my life, for better or for worse. 💫

Life will continue to be a (very) steep mountain, a mountain with no peak in sight. 🌲🌄A mountain that will be difficult to climb. Moving forward I will face many more battles, some that  will have to be fought over and over again. 

But I’m noticing that with each (exhausting) step up the mountain, the view becomes noticeably prettier. 🌅

These views remind me that as I continue putting one foot in front of the other, I should always remember to pause sometimes, and to look behind me at how far I’ve come. ✨These views encourage me to pause on the side of the mountain, and to be proud of all of the steps I have taken. ✨🌅

And while I may be out of breath, and while my heart may be racing, I just hope that above all, I always remember to stop and enjoy the view. 🌄

May 19, 2020

“Don’t Feel Bad for Feeling”

🤍On the really hard days, I know I have a tendency to try to “fix” my feelings. And when I can’t, I judge myself for how I’m feeling. I pass blame for not feeling “good.” But this only brings me down lower. 🤍 I think that sometimes the bravest thing we can do when we are feeling anxious, down, or off is to acknowledge how we are feeling and to let it be, knowing that in time it will pass. Sometimes we just need to sit with feeling lost, and sit with feeling uncertain, and sit with feeling anxious or sad or hopeless. Sitting in the discomfort, without judging it, is oftentimes the bravest way to make it through the hard times. 🤍I’m working on being more compassionate towards myself. I’m trying to observe my feelings, rather than soaking them all in. Rather than putting “shoulds” on myself during difficult days, I’m focusing on what I think would feel cozy and comforting. I try to lighten the load a bit & do whatever I can to make the day more bearable.

My comfort “tools:” ▪️ audible (currently: “American Royals”) ▪️watercolors & doodling

▪️podcasts (@chasingjoypodcast @letitouttt @galpalspodcast @nourishingmindsnutrition) ▪️ spotify (& creating playlists) 🎧

▪️ playing with my pup Leo ❤️What are your comfort tools?❤️

May 21, 2020

🌥Days like today serve as a reminder that despite what I do, I don’t actually have control over my body. My last two classes of (remote) grad school started today & despite the bad flare I’ve been in the middle of the past few days, I still had every intention of waking up and getting a “good” start on the assignments. 🌥But (unsurprisingly) I woke up with a headache, brain fog☁️, fatigue, a racing heart…etc. Deep down I knew this was not going to be a day where I would have any sort of mental or physical stamina to do school work. Yet, I still put pressure on myself to try. ☁️This just led to a great deal of anxiety, because I couldn’t do the schoolwork. I sat, staring at the screen, feeling dizzy and overwhelmed, just willing myself to try to focus. But I couldn’t. And there was nothing I could have done to have changed this. 🌥Some days the “shoulds” still get the best of me, & I try to push myself to do things that are unrealistic, rather than doing things that could be comforting to my body & mind. 🌥While today could have been a gentler day if I had listened to my body’s needs, I do know that blaming myself won’t bring me peace. Instead, today can remind me to give myself grace and forgiveness during the hard days. 🌥Today can remind me of the importance of “surrendering” – not giving up, rather, accepting. Surrendering to my body’s needs & caring for my body is the most nurturing thing I can do for my body & my mind. ☁️🌥⛅️

May 27, 2020

🌙sometimes the cloudiness ☁️of flare ups & symptoms fog up our view and make it a little bit difficult to remember all that we are outside of our illnesses🌨

💙 & though our chronic conditions alter the way we move through & view this world, they certainly do not mask who we truly are

✨ they don’t hide the lovely & special qualities that each of us bring into this world.

✨They are a part of us, but do not define us ⚡️☁️thank you @chronicallyfatiguedmaka for reminding me of this with your #iammorethanmychronicillness movement <3 I hope others join this movement so the world can get to know you for your wonderful hearts & souls ♥️ I am more than my chronic illlness. 🌸 -I am joyful, gracious, sensitive & soft💟

-I am goofy & silly & love to laugh💁🏼‍♀️ -I am a (beginner) watercolor enthusiast & a dedicated doodler 👩🏻‍🎨

-I am an extroverted introvert & a February pisces baby (so – Iots & lots of feelings all of the time 😅)

-I am a lover of animals & an advocate for the compassionate treatment of all beings, great & small 🐷🐣

-I am a dog mama to a (very) high maintenance little guy who I love to pieces🐶

-I am a lover of rain, snow, 60 degree weather, & overcast days (I have a soft spot for sweaters)☁️🌨❄️

-I am a writer, quote collector (pinterest enthusiast), & a lover of words 📝

-I am a grad student studying developmental disabilities (& a past student of psychology) -I am an autism acceptance advocate & a believer that we need all kinds of minds in this world 💙

-I am a lover of: candles, watermelon, 🍉 nail polish, scrunchies, podcasts, baking, Gilmore girls, plants, 🌿 football, lakes. rivers. oceans 🌊 (water!), poems, sunflowers 🌻, autumn & Ed Sheeran 🌙

May 31, 2020

“Youre Allowed to feel Down About It” 

My friend gave me a beautiful bracelet a few years back that reads “It’s not a sprint, it’s a marathon.” 🏃🏼‍♀️ ▫️I used to think that if I stayed positive, I would have a better chance at “beating” my illness. maybe with optimism, I could win the race. ▫️But unsurprisingly, this didn’t exactly work in my favor (…not to mention that it’s not really possible).

▫️Bc this disregards the reality that  life w. a chronic condition IS in fact a marathon… not a sprint. ◻️◻️◻️

▪️We wake up everyday feeling sick & tired. We face the world feeling sick & tired. We go to sleep feeling sick & tired. ▪️We can’t just “beat” our chronic illnesses to the finish line, or “get over” them.  We don’t choose which symptoms we wake up with each day…& we don’t even get to choose whether or not we stay in this race.

▫️▫️▫️

▫️And the thing is, it doesn’t get any easier with time. In some ways, we do heal – we adjust (to some extent) to living with a chronic condition. ▫️But this doesn’t mean it’s not painful or hard, or that we don’t still go through periods of grief.

▫️Grief comes back to us, sometimes every single day, as we continue reprocessing the painful realities of illness. ▪️▪️▪️

▫️To say this life is emotionally & physically draining is an understatement. And to say that we need to always be positive or optimistic would very greatly minimize & overlook how hard this is. ▫️This being said, it is more than okay to feel down sometimes. It’s okay to feel sad, angry, or any emotion at all, even if it’s an emotion that you categorize as “negative.” ▪️Feeling down doesn’t make you any less brave or resilient. It doesn’t make you pessimistic. It just means that you are human, and that you are doing the best you can to live, cope, and deal with the realities of living a chronically ill life. ▫️So give yourself permission to feel how you feel. (and know that you are supported, loved, & accepted during the moments when you feel “okay” & also during the moments when you running & running feels unbearably hard.

♥️

June 6, 2020
🌫Throughout my twenties, I’ve struggled a lot with figuring out how much to let others in on my illness. 🙆🏻‍♀️ Despite how consuming and how incredibly hard it has been to live with a chronic condition, I’ve had the tendency to (try to) hide it from other people – even those I am close to.  I think this was due to a nagging feeling in the pit of my stomach that convinced me that if I were to talk about it more, or if I were to share how I truly felt, my illness would become my identity. ⛈ 🌫But far too many times, my attempts to “hide” my illness from my friends, family, coworkers, & even random strangers, have led to extremely sick days and rough flare ups. ⚡️ & while I know we can’t always (or even usually) prevent / control our flare ups, I also know that I was very clearly over taxing my body & wearing it w. unnecessary pressure & stress. 🌫Though it will take practice, little by little I’m realizing that I don’t need to hide my illness (or symptoms) from other. Speaking honestly about my illness does not turn my illness into my

identity. ⛅️ It just acknowledges the ways in which my health has greatly impacted & shaped (& continues to shape) my world & life. Because it absolutely does, every single day. 🌦 🌫At times, it has felt incredibly tough & I incredibly lonely. Somedays I feel like I’m treading water & other days I feel like I’m drowning. 🌫But I’m beginning to see that hiding my experience only amplifies the hard parts of being sick – it only makes the burden heavier. ⛈ 🌫So while I choose not to be defined by my illness, moving forward, my intention is to avoid telling others “I’m good” or “I’m fine” in the moments when I’m not. My intention is to tell them when I’m exhausted & need to sit, or when I’m far too foggy ☁️☁️ to carry on a conversation. 🌫Because I’d like to think that life becomes a little bit easier when we let others in on the heaviness. Id like to believe our chronic illnesses become a little gentler when we don’t try so hard to hide them. Id like to think opening up will lead to more days of floating, rather than drowning. 🌊

🌫

June 8, 2020

I looked at a few definitions of “heal,” & each was some sort of variation of restoring former health or original health, or making well again. The words that stood out to me were “former,” “again,” and “original.” 🌤 ▫️”Heal” is often used in the context of healing a wound 🩹or healing from a (temporary) illness. In these contexts, the standard definition of heal can apply. When a papercut heals, the skin does essentially return to its “former” state & when healing from a cold, the body does (usually) return “again” to its former /original illness-free state. 🌤 ⚡️But chronic illness healing is different. ☁️For a while, I had hoped that healing would mean returning to my past state – physiologically at least.  I thought healing would mean my heart rate would chill out & I would start sleeping again. I thought it would mean the nausea & flu like symptoms would dissipate. ☁️ ⚡️However, that’s not entirely how chronic conditions work ((at least, not most of the time)) 🌤So now, I’m intentionally looking at healing from a very new perspective –  a perspective that typical definitions of “heal” exclude or forget to mention. ✨ ✨Perhaps instead of focusing on the dictionary’s emphasis on terminology such as returning//former// or original ((past-oriented words)), we could focus on a few more forward looking terms such as: “becoming” “accepting” & “creating.” ✨✨ ⚡️I think healing is actually accepting ourselves, while we simultaneously create & become who we want to be. Healing is allowing ourselves to be okay with life turning out differently than we had expected. It’s learning that we can still be okay with life, even if our chronic condition stays with us. 🌱Healing means looking forward to the future with grace and curiosity, rather than aspiring to be who we were before we became sick. 🌱 ▫️What the dictionary leaves out is that a lot of the time, healing is actually accepting. ✨And then continuing onward. ✨

June 10, 2020

As the world begins to open, please, take care. 

☁️The coronavirus is & has been devastating and extremely heartbreaking. I feel so incredibly sad for those who have been emotionally & physically impacted by it & for those who have had to face grief & suffering. I do not take this lightly. 🌥However something special grew out of this time at home a gentle light has shone during this pandemic… & it’s a light that I am afraid of losing🌤

Staying at home & knowing that the rest of the world was also at home made it feel as though we were all in a cozy, warm bubble together. 🌤 It was comforting & peaceful to know that we were all in this same little boat. 🚣🏼‍♂️

Even though it’s different to be home & sick vs. to be home & healthy, it still felt so much less lonely & less isolating knowing that we were not the only ones at home on our couches. The pressure to show up was lifted off of our shoulders. 🌸 And because everyone was afraid of becoming lonely, they reached out more – & we were all a little bit more connected. 🌜i feel conflicted finding gratitude during such a devastating time, but I think it’s okay to acknowledge that light and darkness can coexist. I have felt much lighter & more joyful these past few months. 🌺

My sister has been home with me these past few months, & just having her here has really raised my spirits. It has been so comforting to watch a tv show together every night & to have little random conversations throughout the day. 👯‍♀️Life is a little easier when we have people there by our sides. & it has been a blessing that friends have been eager to FaceTime & talk on the phone more than ever – bc they too are home & miss social connection. With facetime and zoom, we can show up in our pajamas, or sit in our bed with our pillows – it’s so much less energy & exertion. 🌸

I’m a little bit nervous for the world to “open” back up, and fear that life will once again be a little more lonely & a little more distant. Isn’t it funny how during a “socially distant” time, it’s possible to feel a little bit more connected? 🙆🏻‍♀️

🌤I am hopeful that maybe now others will understand our lives a bit better – after experiencing being home and being distant. I’m hopeful that maybe some connections can continue to be strengthened through phone calls and facetimes, and just through checking in with one another through texts. 🌤

I truly hope that some of the comfort that has arisen from this warm little bubble can carry on moving forward. ✨

June 14, 2020

So somehow of course I’ve managed to get sick with something besides corona during a global pandemic! I’m not too surprised tbh 👩🏼‍🦰 My fever began on Tuesday, followed by a cough, chest tightness & an on and off headache ((idk for sure if this headache is just my normal body though 🙆🏻‍♀️ )). I decided to get tested for covid on Wednesday ((the dreaded nose swab test 🤒)) & it came back negative. 🤷🏻‍♀️I was a tad surprised – still unsure if I am relieved or not. In someways, it could have almost been “good” if this was covid bc my body has been coping properly with it 😬 ((…though covid does scare me a bit- so I’m also tentatively relieved)) ☁️ I also learned that apparently the false negative rate in coronavirus testing is 1 in 5 (kinda high!) – so while there’s still the slight chance it’s corona, we are treating it as either bronchitis or early pneumonia (w. antibiotics) 😬 😷either way, it’s made me a little bit extra nervous about getting covid bc there’s a lot of uncertainty about how my body will react to the virus – which I’m sure a lot of you are also experiencing! 🙋🏼‍♀️ being “vulnerable” adds to this fear – though it is also possible my body would be okay. 🤷🏻‍♀️ It’s scary bc there are so many unknowns & uncertainties with this virus – including even how easily it’s actually spreading 😷 My sister & I have been using Instacart (🍎 which I also use when I’m normal “sick” as well – & am incredibly thankful for) & we have been cleaning all of our groceries before putting them away. 🍌🥖🥑

With the push to to “get back out “ into the world, it’s difficult to know what is “worth” the risk and the unknowns – & how we can join the world with less risk. Do we keep in circle very small? Do we limit it to one or two people? Do we stay distanced? There are many questions & I think what we feel comfortable with is very individual. 🌥

Would love to hear your perspectives & thoughts –

How do you feel about the risk of getting the virus? How are you approaching the world opening up around you?

🌥

I know it’s hard to live in uncertainty – so be gentle with yourself. And know that there’s no one right way to approach this. 💟 Sending light & lots of love! ❤️

((ps – very thankful for my little lion man pup for cuddling with me this week 🐶🐶🐶))

June 15, 2020

“I used to run myself to empty searching for my route to significance. I am finding all the depth & magic in the small and ordinary” @zeaink ✨✨✨

Chasing “significance” has been a challenge for me for who knows how long. I think part of this came from a desire to feel in control of life – to always be working towards something ((which isn’t actually control)). ⚡️I also thought that if I could find ways to make my life seem more “meaningful,” I would have a way to feel valuable or special. ⛅️ Now I see that I was looking outside of myself for something to be proud of, because I felt weary about what i had to offer to the world.☁️🌙

But the preoccupation with trying to do the “right” things, and trying to reach the “right” accomplishments led to a whole lot of anxiety. ⚡️Especially because making “big” decisions was so draining – and often, even if i made a decision, i didn’t actually feel as though what i was doing was making my life more meaningful or significant.

And when i had to quit things (because of health and because of anxiety that i had chosen the “wrong” thing), then I felt even worse about myself. ☁️

But when I came across these ((special)) words this morning, I was hit with the realization that in very subtle ways, I think my mindset has actually shifted. 🌖🌗🌕

With grad school (thankfully) coming to an end, the “old” me would have probably been uneasy about not knowing what is next. I don’t have another set plan or goal – or another pathway to something “significant.” ((And I actually don’t feel like graduating makes ME any more significant – though I am thankful 💫💫))

And…the truth is…I’m okay with it. I’m actually okay with letting things be & with seeing what happens. I’m okay with finding magic in the small, ordinary things. And when I don’t focus so much on significance, each day becomes a bit more precious. Each small joy becomes something meaningful. 🌕

—

🌍 The small & ordinary magical joyful parts of life right now:

-a new season of queer eye (!!)

-new music discoveries on spotify -maybe moving into a home with a fenced in yard!

-getting to visit my dad from a distance outside

-my new plants!

-my little 14 pound joy named Leo

June 19, 2020

The past two days were pretty darn foggy ☁️☁️☁️ & I couldn’t be nearly as productive as I was hoping to be. My school work was taking me much longer than usual, as my brain foggy mind made thinking (with any sort of clarity) ridiculously difficult.

But I kept pushing myself to do more to “get this done.” ⛈ ⚡️By late afternoon, anxiety was brewing inside of me and I was feeling pretty burnt out – *trying* to focus for so long is verrry mentally && physically draining ((esp when you are fatigued to begin with)).☔️ ⛈By evening, the frustration had hit bc I worried that I had wasted my day – *not because I wasn’t productive* – but because I hadn’t allowed myself to make any space for joy or relaxation – I hadn’t softened my expectations to fulfill my body or mind’s needs. I hadn’t listened to my body, and instead, had pushed.🌪 ⚡️My old sneaky little beliefs had resurfaced & told me that I needed to be productive. 🌪 Instead of putting heavy pressure on myself, I could have listened to my body’s needs & let go of some of the expectations. I could have done something that would have brought me a little lightbeam of joy during a flared up day, like watching Riverdale or listening to a lighthearted audible book. 🎧 ⛅️ it’s difficult to shift our hardwired approaches and beliefs about staying busy or being productive. but i want to be more intentional about lovingly & compassionately caring for my mind & my body. I want to lessen my grip on expectations and move gently through the ups & downs of life ((w. ease & grace)). I hope to shift my values from doing more ➡️ feeling good. ✨ ⛅️Living with a chronic condition is a delicate balancing act, one that I realize I’m still learning. Of course there are going to be times when we do have to (or want to) push ourselves just a little bit extra, but maybe we can save these “push” moments for times when the outcome is joy or connection or happiness ((and not anxiety)). ✨

June 25, 2020

Sometimes I get a little nervous when I start to think about the future. How will I have a family? How will I have a baby and take care of the baby? And when the baby becomes a child? Sometimes just taking care of my dog uses up any and all of my energy (though he 10000% is a handful, to be fair). I also worry about what kind of job I will have in the future, or if I can get disability benefits and still maybe work a bit, just to get out of the house. I worry about what it will be like to still be sick in the future. 🍃🍃🍃

I think it’s okay to let my thoughts slip into the future sometimes, because even though it may feel a bit anxiety provoking, these are real scenarios that I may face some day. 🌤🌤🌤

But I think that if I can shift my fear into curiosity, it leaves a little bit more space for pondering about the good parts of the future – about what could go right. The idea of having a family sounds quite lovely, as does finding another job that inspires me or brings me contentment. There’s so much room still left for goodness. 🌤🌤🌤

Since becoming sick, I have faced disappointments and losses, changed many plans, and adapted to new and unexpected routes. But despite these challenges, I have continued to carve my path forward. I haven’t given up. ⚡️⚡️⚡️

Though at times it has been painful and very discouraging, 🌨 I cannot deny that it has also been filled with moments of so much compassion and grace. Sometimes the smallest pockets of joy turn into the greatest moments of hope. ✨✨✨

I don’t know what the future holds. I don’t know how my health will be. But I’d like to think that there’s just as much a reason to be hopeful as any. I am scared of the future, but I am also curious. Perhaps the question I could ask myself is “what happens if things end up even better than expected?”🌟🌟🌟

The mountain ahead will be difficult to climb, but I have faith that around each corner I will be blessed with a beautiful view. 🌄🌄🌄

June 30, 2020

🌟I’m (constantly) inspired by one of my very best friends who had an Ileostomy surgery yesterday morning. I admire her so very much for the grace and bravery she approached this procedure with. She has been quietly struggling with pain and discomfort for a long while now & it is my greatest hope that this change brings her so much relief, as she is a very special soul & a bright light in this world! ✨✨✨

Her experience reminds me of the quote by Ernest Hemingway:

“You are so brave & quiet I forgot you are suffering.” 🌟🌟

So many of us make our way through this world carrying the burden of not feeling well. The invisibility of our illnesses often shields the world from understanding how immensely hard moments or days can be. While we can hope with all of our hearts that others will see us with empathy & compassion, my friend reminds me that no matter whether our bravery is acknowledged , we should be incredibly proud of ourselves & of our quiet but powerful resilience.

♥️

I am so grateful for Klaire today, & am wishing her a smooth recovery, courage moving forward, and a chance at feeling a little bit better ❤️

✨✨✨

((so much love for you, friend!))

🌟

July 2, 2020

⬆️⬆️ the face of so much joy & a whole lot of relief. yesterday I completed my graduate degree at Columbia U. in developmental disabilities. 〰️ something I never knew would happen.

I became really sick in the beginning of my senior year of college, after a virus. I had to spend time at my dad’s frequently that year, as I needed a LOT of support & help. I don’t quite know how it all happened looking back, but I know I was lucky that I was able to finish my final year (despite all of the fainting, brain fog, and constantly racing heart).

Tbh, I don’t think I would have graduated if it weren’t for my wonderful dad and for my beautiful, kindhearted roommates @calliechandler @jelly_wright @demolysh who were always there supporting me & cheering me on. (Thank you 😘😘)

I had always planned to move straight through to grad school after undergrad,but this plan was inevitably derailed when I could barely stand for more than a few minutes, let alone follow the plot of a book or tv show. ☁️☁️because I felt like this was it, I had reached my peak, I wound up crying on graduation day. There was no joy, just sadness as it felt like the “true” end to any sense of normalcy or even happiness. The rest of my life now looked more lonely& more difficult- it seemed tainted with sickness and uncertainty. 🌩

Bc I didn’t know how to handle these feelings, I continued searching for grad school programs – I guess I was sort of pretending I wasn’t sick? I even applied to some programs and then had to go through the let down & heartbreak of realizing I couldn’t physically do them. 🌩

For a while there, life felt pretty dark.

☁️⛅️But then I found a light in the tunnel ✨when I stumbled into a (very) part time job with an autism organization. I was blessed to have been gifted a new passion & with a group of wonderful souls that I was lucky enough to grow to know and to care deeply for.✨

It was because of this passion that I applied for this current masters program. I chose this program because it was about something I cared deeply for – not because it was my dream degree or something I had always wanted. But it found its way to me at a time when I was ready. ✨ 

I don’t want to sugarcoat it – these past 2 years have been truly hard. With so much insomnia, brain fog, & dizziness, I almost quit several times. I faced a lot of anxiety and a lot of times, I felt like it was too much. I felt like I couldn’t do it. ⚡️⚡️

But today, I’m just so very grateful and joyful. It’s not that I’m celebrating having a new degree. What I’m actually celebrating is that I made it to the other side – I paved myself a new path. I found something I cared about. And I tried something new, not knowing if I would make it, but also realizing it was ok if I didn’t.

The truth is though, it’s not about getting a degree or a job or reaching any sort of “milestone.” It’s about finally having faith & seeing those teensy stars peeking out behind the clouds. ⭐️

I guess today I’m celebrating for the sad girl in 2014 who didn’t celebrate. For the girl who felt like her life was ruined & over. I’m celebrating for her because little by little, I’ve learned that life can still be worth celebrating. ✨✨✨

July 6, 2020

Something that has really been troubling me lately is how life seems to be carrying on as if everything is normal, amidst something so terribly sad & tragic. ☁️It’s very difficult for me to express my feelings on this, as it’s not my intention to blame or shame anyone. This comes from a place of caring and sensitivity. I know that we are all doing the best we can & I also know we each have our own coping mechanisms. I know it’s an immensely difficult situation, and something we’ve never experienced before. ☁️

But I am also aware that the only thing that can really save us from the worst of this pandemic is empathy. Empathy, as well as kindness and compassion. The only thing that will save us is caring deeply about the lives of others. ⛅️

It’s heartbreaking to see people going out to bars or restaurants, or hanging with big groups of friends & not acknowledging that these actions could create a ripple effect that could lead to the suffering or death of someone in a nursing home, or someone’s mom, or grandfather, or best friend.☁️

For those of us with chronic illnesses, I think we have gotten used to loss. We have gotten used to not getting to do what we hoped to do. We’ve gotten used to missing out on weekend plans, or fun road trips. Or even work or going to school. We are used to loss, but this doesn’t make it any easier. Yet, we just learn how to cope, and we do our best, and we find a new way to be. ⛅️

And this is probably why I think it hurts so much to see that other people aren’t willing to do the same – to stay home, to miss out on fun opportunities, to isolate – when it can save lives & prevent suffering. I just wish we could all come together to fight this – by caring more and by loving more. By having empathy for others, including for those we don’t personally know. By acknowledging that every single person who has died has had family, or friends, or loved ones who have had to go through immeasurable loss and pain.

I know it’s really, really difficult to stay distanced, especially when things are open & and when we’ve been “stuck” inside for so long. ☁️☁️☁️

But I just hope that we can all be more intentional and live compassionately. And I do know we need each other – mental health is important. There are safe ways to find comfort &  support – opening our bubbles to 1 or 2 friends or family members who are also staying isolated (and are therefore not contributing to the spread). There are ways to still love each other, despite the pandemic. ☁️☁️

I know it’s hard, but the more we care, the more lives that are saved. And with each life saved, we add so much joy and so much love to this world. ✨

July 8, 2020

“But you look so healthy!” ….“But you don’t look sick!”….

(pause) 〰️〰️

I never know what to say to these words. Responding with “well, I am sick” just seems uncomfortable & awkward. So, instead, I usually just smile and say “thank you.” because what else is there to say? Explaining that my illness is invisible won’t really matter  because, well, I look “fine.” 〰️〰️

This can feel disheartening & isolating because it often makes it seem like a friend or family member might think we are just exaggerating  when we do open up about our symptoms. or they may not understand when we have to cancel or adjust a plan. Or they will never really mention that we are sick, or offer support by checking in.  Sometimes it feels like we have to prove our illness, or only talk about it when it’s “really” bad.  Because if we don’t talk about it, it can feel like it doesn’t exist. 〰️〰️

I don’t blame others for having trouble understanding, because it’s a very complicated dichotomy. . Even as someone with a chronic illness, sometimes I forget that my friends with chronic conditions (who look “great”) are quietly struggling. 〰️〰️

I think that it makes it that much more meaningful when our friends or family members do check in and acknowledge how we are feeling. Whether it’s a text or a phone call, or just a genuine question in the middle of a conversation – it means a lot. It lets us know that someone we care about cares a lot about us, and knows that just because we aren’t talking about it, doesn’t mean we aren’t having a hard time.

〰️〰️

July 9, 2020

“Things can be different than you anticipated but they can still be okay.”

abandoning the old path & finding a new way 🤍

July 19, 2020 

“I do not know how else to explain that you do not want post-viral syndrome” @makelemonadewithlupus

☁️

My pots & chronic fatigue syndrome

were the result of an unassuming virus. I was a healthy 21 year old w. a normal pulse and normal blood pressure. My feet didn’t turn purple upon standing up. I didn’t become lightheaded at the drop of a hat. I could run & dance & stand up for as long as my heart desired. My brain wasn’t foggy and & I wasn’t dizzy or disoriented. Lights and noises weren’t so overstimulating & I didn’t feel like I was walking through quick sand. nor did I struggle to open heavy doors or to hang up shower curtains. Trying on clothes in a dressing room didn’t spike my pulse up to 150 & I could go out in the summer heat without feeling absolutely dreadful. ☁️

Thus, for me, a “casual” virus turned into a serious chronic condition …& my life changed (drastically)…just like that. ☁️ ever since, life has been full of doctors appts, medications, headaches, food intolerances & lots of time on the couch. ☁️

This being said, knowing that covid has the potential to dramatically change the lives of so many people (long term) is extremely frightening – particularly bc many are still brushing it off as an innocent virus that their youth or “good” health will protect them from. They aren’t considering that they too could lose their health long term ☁️

this is probably why I feel so sensitive about how lightly some people are taking this. I’m really scared for those whose lives may be permanently changed both while they have this virus & as well as potentially years after (if not for life). ☁️ I’m disheartened by those who still refuse to wear masks & continue to go out w. friends. their choices reflect a lack of compassion for the lives & wellbeing of the people they may spread it to. ☁️

I’ve accepted where I am in life, & I can honestly say that I am happy. but this doesn’t mean I wouldn’t rather be “healthy.” ☁️

I just wish with all my heart that everyone would step up & take care of themselves & of each other so that fewer people will have to learn to live with the heavy weight of a (post covid) chronic condition.

July 22, 2020

I’ve noticed a lot of posts circulating around affirming that “it’s okay if you gain some weight {bc} we are in a pandemic.” ☁️

each time I read something of this nature my stomach knots up a bit, as while maybe well intended, these words seem to further enhance the belief that weight gain is only “okay” bc we are coping with something tolling & tragic. Weight gain is acceptable only if we have a “reason” or only if we are facing something stressful. There is still the sneaky little negative implication here that weight gain isn’t “good” (& it’s only ok because we are going through something so overwhelming). 💫

But… we absolutely do not need to be in a pandemic for it to be “okay” to gain weight. Weight gain is natural (& weight loss is natural). Our bodies are constantly fluctuating – and this is totally normal. ☁️Weight gain is by no

means a bad thing & we don’t need to be in a pandemic or a crisis for it to be permissible for our bodies to change. ✨

I’ve gained a little weight over the past few months – but not “because”

of the pandemic. I’m assuming I gained some weight simply bc my body decided that it would be happier if it was a little bigger. I’ve been putting more intention & care into nourishing & nurturing my body – & for me, I guess this resulted in a slight weight change. ⭐️

This is all to say that bodies change (& are supposed to change!!) no matter whether there is a global pandemic or no pandemic. Our bodies know what’s best for us, & as human beings who are constantly changing and growing, weight fluctuation is very normal (& is very much neutral). ☁️

(((side note, it IS also ok if the stress of the pandemic is in some way related to your body’s weight loss or weight gain. I just really want to bring light to the fact that weight gain or weight loss are always ok. Our bodies always have permission to change, pandemic or no pandemic)))

⭐️

July 27, 2020

“Needing Help Doesn’t Make you a Burden”

My sister and I are moving into a lil townhouse this week, & I keep finding myself feeling a bit guilty for not being able to contribute as much to the packing, cleaning, & moving. We’re hiring movers, but even carrying the littler things to the car ((esp. in this heat)) is a big struggle 😰 …& trying to carry the (semi) heavy things is nearly impossible! Then there are the “small” things like taking down my shower curtain – I have to ask her for help bc keeping my arms above my head is a no go. 😳

Knowing that she is taking on so much of the load makes me feel uneasy – I don’t love that the balance is so uneven. 〰️

I know she is here for me & understands, but of course it’s no fun to have to do all of the work.

☁️

But I’m realizing that sometimes we do have to rely on others for support – & I’m working on accepting that this is okay. Im hoping that perhaps if we can support those who support us in other ways, less physical / exhausting ways, the balance won’t feel so uneven 〰️ I’m trying to remind myself that this doesn’t mean that whenever someone helps us we “owe” them – but more so that we can express our gratitude & show how much we love them whenever we can & as often as we feel called to ☁️

I am extremely grateful for my sister, & I hope she knows this. ✨

Relationships go both ways – and we all add to relationships in our own unique & beautiful ways. Acts of service are one way we support each other – but not the only way. ✨

Know that the support you have in your heart to give is just as meaningful & special, no matter what form it comes in.

🤍 remember 〰️

You are not a burden for asking for help. ☁️

August 2, 2020

☁️Yesterday I set the intention to have a really creative & productive Sunday. I was excited to work on some writing for thought catalog & the book I’m writing, and I had intended to continue organizing our new little home ((…the boxes are all gone – phew –  but it still looks like a bit of a disaster!)). 

☁️But when I woke up this morning, it became evident that my body had a very different plan in store for me. The dizziness, brain fog, & disorientation hit me immediately upon waking at 8, & right away I felt weighed down, frustrated, and upset. I had planned for a really “good” day, but now my body was interfering. 

☁️Even though I am used to this let down feeling, it’s still hard when brain fog comes rolling in like a giant gray storm cloud, and takes over the sky. Suddenly, my body has changed the forecast, and I am just standing on the ground, umbrella-less and unsettled. 

😰☁️I’ve been in an anxious headspace this morning, because I feel like I can’t do any of the things I want to do – even those things that might seem “small” to others – like minor organizing or responding to messages from friends. 

☁️ My mind feels very overwhelmed with dizziness and fogginess, as well as with frustration about said dizziness. But I’m trying ((hard as it may be)) to remind myself that it’s okay to have a day of rest. It’s okay to have a day full of music, drawing or doodling, or even browsing on tictoc or instagram. It’s okay to just BE and to let my body do it’s own healing & balancing. 

☁️It was a blessing to stumble across a quote by @jaynehardy_ a few minutes ago: 

“give yourself space to really understand what you might need from the day rather than what the day needs from you” ✨✨

☁️Today will try my hardest to focus on what I need – on what feels good & nurturing to my heart and soul. Today I will loosen my expectations & try to accept that whatever I do is plenty – rather than feeling angry with myself for what I cannot do. The organizing, writing, and messaging my friends can all wait. ☁️

☁️& in time, this dizzy wave will pass through. 

✨In the mean time, I’m going to soak up Taylor swift’s new album. 〰️〰️〰️ What’s your fave folklore song? 🤍

August 4, 2020

figuring out what’s going on with this cough & my (tricky) body has been a maze! ive had an on & off cough & headache (with up and down fevers) since early june! 2 of my docs have now said they are pretty certain (80% sure and 95% sure) it was corona & that this is now the “chronic” stage of the corona. ((we are all familiar with chronic conditions…fingers crossed that this new cough is a temporary type of chronic??))

☁️

my white blood cell count is still pretty elevated & histamine is acting wild (more so than usual), so we know something is still up!

☁️

because my covid test back in the day was negative, i’m may never find certainty in a diagnosis – unless we find out that it’s something else (& o rule out corona in this way). it’s a bummer that antibody tests aren’t reliable yet either – i guess this just exemplifies how complicated corona is.

☁️〰️

bc the infectious disease doctor seems to want to find some sort of clinical “evidence” that determines what this is, he wants me to do more tests – echocardiograms and such to look for this infection! (my other docs arent sure if this is necessary, but suppose it is safe). in the mean time, i will be on a second round of antibiotics just in case this will knock it out.

☁️

it’s also difficult to tell doctors what symptoms I’m having bc I started out with all my POTS and it’s hard to tell if i’m extra dizzy lately because I’m “sick” or i’m just having a dizzy week or month. life with chronic conditions remains confusing!

☁️

has anyone else had a chronic cough or something similar lately?

☁️

August 6, 2020

“Don’t even for a second think that your chronic illness makes your life any less meaningful. A meaningful life looks different for everyone. Your life holds meaning.”
your life doesn’t have to look like any one else’s life for it to hold meaning 🤍 (a meaningful life is not determined by productivity, job, energy level, health, or ability to show up 🤍)

☁️

☁️

August 8, 2020

 few days ago a doctor asked me why my primary care doc is so far away (in maryland – i live in virginia), & I explained that he’s a really good doc & treats me for POTS (& etc.). This doc nodded knowingly and responded “oh, Im’ familiar with POTS! My granddaughter used to have POTS – she doesn’t anymore, she had surgery  & fixed it right up ” (I forget the name of the surgery – it was something I’m  unfamiliar with – it wasn’t a procedure that any of my laundry list of doctors have ever recommended for me).  Before I had the chance to respond, he added “maybe you should get the surgery.” after i let this conversation sort of drop off, it was time to go and as I was about to stand up, he said smiling and sort of “jokingly” – “don’t stand up fast – you’ll faint!” 

☁️

At face value, none of this was meant to hurt my feelings or distress me in any way. He was sharing his experience with / awareness of POTS, as the grandfather of someone with POTS. but I couldnt help but feel a bit hurt, as if he was brushing off or minimizing my condition and in many ways, minimizing me. It felt like he thought I wasn’t doing what I could to take care of my POTS – I wasn’t taking care of myself. I wasn’t trying to get better. His words also almost implied that my only struggle is standing up too quickly – and that this was almost humorous. 

☁️

I think this hurt & brought about such intense feelings of discomfort because POTS has changed my life so incredibly much in these 7 years. it has impacted nearly every single aspect of my life –  it’s much more than a simple matter of seeing black spots or fainting upon standing.  

☁️

While his comments upset me,  I think I was able to let them  go a bit more easily than I would have been able to just a few years ago. Maybe his granddaughter wasn’t as impacted by her POTS & perhaps a surgery was the answer to the troubles she experienced. Thus, maybe he genuinely thought POTS had a “quick fix.” 

☁️

This is just one little interaction – but on a larger scale, it represents how we each have our own experience, and from the outside, not everyone will understand. (Cont. In comments ☁️🤍)

August 11, 2020

Sometimes when I have a really “good” day – when my symptoms decide to take a lil nap & let me be – my mind automatically jumps to “maybe I’m getting better?”

☁️

It’s kinda funny that this thought still easily comes up after all of these years with chronic conditions – Especially bc each time I do have a “good day” it usually is truly solely only one or two good days at a time. But for some reason I always want to believe that – “wow! I’m really getting better!”

☁️

But when I have these special energetic or focused (healthy-ish) days, I tend to take advantage of my new found freedom by pushing & pushing and by squeezing all of the juicy goodness out of the day ((which happens to be synonymous with overdoing it )).

☁️

I wake up the following morning exhausted & dizzy, or in the midst of a headache / fog flare. or during some recovery days, my

body feels kinda like it was hit by a big truck.

☁️😰

It’s hard when my hopes lift up each time this happens- bc then I find myself back in square one the following day or days.

☁️

But I think that maybe I need to reframe my relationship with these days. I can be grateful that I now have these days (or half days, or quarter days, or even moments) that resemble my old life. I can enjoy the relief that comes with them, but I can also appreciate it in moderation. I dont have to do every single little thing I’ve wanted to do for days or years in one or two days. I can spread things out, and be gentle with my body, and remain hopeful that another “better” day will come soon.

☁️

I also can remind myself that there is still plenty of goodness in my “typical” chronic illness days – & I don’t need to be so afraid of the storm following the sun. I’ve survived up until now, and I still find hope in each day.

☁️

maybe I can just think of life and health as a cycle of rainstorms and sunshine. Though my symptoms each day will fluctuate, I can still find pockets of joy in each day – despite how I feel. The hard days & the softer days can both exist – and I can find freedom in each.

☁️

☁️

August 13, 2020

“Sometimes we need to prioritize our joy & emotional wellbeing over our health.”

Sometimes we need to prioritize our emotional and mental wellbeing over our physical health. 〰️ Of course this isn’t always possible – in many situations our health takes precedence. But when we are able to prioritize joy, the happiness, freedom, & connection may we’ll be worth the extra flare of discomfort or pain or exhaustion. It’s a delicate & very tricky balancing act – figuring out how to prioritize both our mental and physical health. I know I work on it on a daily basis ☁️ But sometimes there are special moments when we know we just have to do something to lighten our hearts and our minds, despite the flare it may bring about. ☁️((I would like to acknowledge that to have the opportunity to do this – to prioritize joy & emotional well-being – is a privilege for those with chronic conditions. I don’t want to be ignorant to this fact – as I know that I am lucky to be in a place where I can do this at times. Sending so much love to all of those people who have to prioritize physical health right now. & to everyone figuring out this delicate balance ❤️)).

〰️

〰️

August 15, 2020

Sometimes keeping up w. the world (& friends & family) & “keeping up” with my (physical & emotional) can feel pretty overwhelming. I am grateful for the smooth sailing days or weeks when life flows & when  i feel fairly comfortable with routines & in my groove.  but sometimes it can feel like balancing too many plates on one tiny finger – one little slip & everything topples over. 
☁️
Though my job isn’t too much pressure  & i enjoy what I do, a few hours of work can take many “productive” (useful) hours out of the day, especially when factoring in fatigue, dizziness,  & brain fog (+adhd).  Focusing is often a heavy task & takes a lot of extra stamina (that I only sometimes have). Sometimes (like these past few days)  it feels like i am falling behind, even when i’m putting in the time. 
☁️
This week was one of those weeks where i struggled to keep up  & felt overwhelmed w. too many plates to balance. I forgot to refill one of my meds on time (one that i rely on) & am now feeling the weight of this (& resulting flare up). Usually this is one thing i’m on top of but my brain just wasn’t here this week.

☁️

I also feel bad/sad as I was unable to keep up w. my family’s book club (as trying to focus w. a very foggy brain has made reading feel like a nearly impossible feat). I’m doing my best to read some of the book, but processing it isn’t working out so well. Aside from this, I couldn’t really keep up w. friends or check in as much (through texting or calling), so I felt kinda distant.

☁️

I guess ultimately there were a lot of “shoulds” but not as many “coulds.” The  little things just took a whole lot more out of me this week.  

☁️

It’s difficult to not feel ‘bad’ or guilty about these things – especially when they impact other people, or when my own actions let others down. Or when it’s hard to make or keep commitments. But I have to remember that beating myself up for what I can’t do will not make them any more doable, or make me feel any better. ☁️ I’m trying to remember that the act of surrendering is the very best thing we can do. Surrendering as in letting things be – seeking peace over control – Flowing rather than fighting. Giving in over giving up. ☁️

August 18, 2020

Sometimes growth is quiet and subtle and doesn’t look like growth. Sometimes growth is simply viewing a situation from a fresh perspective. Sometimes growth is trying something new, despite whether or not it ends up being a good experience. Sometimes growth just means making it through each day and noticing one small good thing about the world each night. Some seasons are for making leaps and bounds, while others are simply for surviving and just being. Both seasons are important. Both are needed. 🤍

☁️

☁️

☁️

August 19, 2020

“Your best may look different than someone else’s best. Your best may vary from day to day, or hour to hour. Your best may not always feel like your best. All of these are okay.”

☁️☁️

August 21, 2020

I’m realizing that being at peace with life doesn’t mean that everything is perfect, or that we don’t have any troubles or tribulations or low energy nagging at our hearts. Being at peace doesn’t mean that life is wonderful, or that we aren’t stressed, or facing anxiety. More so, being at peace means finding some form of “okayness” amidst all of the parts of life that are not (yet) “okay.” It means sitting amidst the chaos and making the conscious decision to remain calm. To be okay. Ultimately, finding peace means acknowledging the storm and coexisting with it, rather than sitting in the eye of the tornado.

☁️

☁️

August 24, 2020

sometimes i feel like i’m failing at “wellness” because I can’t follow the “rules” of the current trendy wellness culture (a culture built on eating clean and healing with food and movement). for many of us with chronic conditions, this “wellness” is not very attainable (or even ideal) for our bodies. barre, orange theory, & 10ks may be impossible, and glutinous toast may be the best (or only) option for coping with nausea

☁️

because of how society frames wellness, sometimes we feel like it is our personal responsibility to at least be “as well” as possible, or even to heal our chronic condition.  the overarching conflict between having a chronic condition and pursuing this specific “wellness” is that even if we submerge ourselves in all of the trendy wellness practices under the sun, there’s no guarantee that we will get “better.” We could partake in every single wellness practice and still not “heal” – in fact, we could even feel a whole lot worse.

☁️

So it’s not surprising that at times we feel like we are failing when we aren’t perfect, or when we aren’t doing every single thing in our power to take care of our bodies. But aren’t we moving away from wellness,  if we are constantly feeling like we aren’t living up to (impossible) expectations? Couldn’t we move more towards wellness by focusing  more on what we can do, rather than we can’t?

☁️

i’m realizing that wellness relates much more to how we move through this world – which thoughts we choose to nurture & believe, how compassionately we treat our bodies & minds, how we handle our stress & anxiety (with kindness and patience), who we choose to hold near & dear to our hearts, how we find meaning in life, & how we choose to define joy and happiness. much more than what we eat or how we move, I believe  wellness is built of grace, forgiveness & kindness – wellness is finding peace amidst chaos and valuing who we are as people.

August 27, 2020

While we will all have down days, and moments when we  feel disappointed by our bodies  or moments when grief sneaks back up on us and reminds us of our losses, we have to be gentle with ourselves and gently care for ourselves.

☁️

Sometimes this means crying and releasing some of the emotions, & other times it means calling a friend on facetime (@beehellman ) or listening to a comforting, cozy book on audible to bring us a bit of peace.

☁️

Though I believe that our thoughts and our intuitions should usually be our guiding lights, when we are deep in heavy feelings I hope we can remember that our feelings & thoughts are just that – feelings & thoughts – they of course hold depth, value & meaning, but they don’t always hold concrete truth. They are driven often by our hearts, and when the world is dark, sometimes our thoughts go to a lonely place where it’s hard to find the light. If we get to this point, it’s easy for everything to suddenly feel “negative” or scary – it’s easy for everything to feel bad. when we go down this rabbithole of pain *physical or emotional* we might tell ourselves that we have no reason to hold on to joy. ☁️

When this happens, be gentle. Your thoughts are important and your mind is important, but your mind isn’t always telling you the truth.

☁️

To take gentle care of our very delicate hearts and minds, we have to try to remember that our thoughts do reflect how we may feel, but they don’t necessarily hold validity. They aren’t always right. If you are able, try to shift your perspective – even a little bit. Ask “but what if?” or “what else could be true?”☁️

Remember that today is one day, and we can always try again tomorrow. And if tomorrow is a hard day, maybe the next day will be a bit lighter. 🌤

☁️

☁️

August 30, 2020

“Loss is not how your story ends.”

This is one of those ((really really)) hard reminders / lessons that we seem to have to learn over & over again. ☁️

I think that loss & grief are two of the most difficult & painful experiences we go through as human beings. And loss & grief show up in so many different forms – deaths, break ups, endings of friendships (/ endings of any special relationships) – & of course grief consumes us when we lose our health to a chronic illness. ☁️

The grief I felt when my mom died was painful and lonely and difficult … and then I felt this intense loss & grief again when I became sick – they were different losses, but led to a similar heaviness – a a similar hopelessness. I remember those familiar thoughts of “how will I go on?” ☁️

Ive realized that grief is so hard because we can’t solve it – there is no solution. We are forced to endure it & feel it. We somehow have to cope with heartbreak and loss & know that our lives & our futures have now been forever changed.

☁️this heaviness feels like an ending because it is an ending. It’s an ending of something so precious and meaningful. It’s an ending of something we cherished or held close. It’s an ending of something we relied on. ☁️

However, somehow, amidst this ending, we have to remind ourselves that this loss is not our final ending. That somehow we have to keep going.

🌤

So we have to try ( so very very ) hard to create a new way forward. We have to learn to carry on even with the heaviness of grief weighing down on our hearts & our souls. ((and this takes so much courage & bravery)) this takes trying to remember what hope feels like. 🌤

– the way forward will be new and unfamiliar & It may be very lonely.

But hopefully if we keep going, a little of our pain will be replaced with wonder. A little bit of color will replace the gray. 🌤 We will understand that though we endured a great loss, we still have so many special people and moments in our life to live for. We still have so many pages to write and so many new beginnings. They may not look how we expected them to,  and they may be very difficult at times, but they still hold space for grace & joy & love. They are still worth feeling hopeful about. 🌤

September 2, 2020

Some of the hardest work is trying remember to look for moments of joy & happiness & gratitude amidst symptoms & heaviness & overwhelm

🌤

But maybe it’s not finding the little joys exactly, but rather allowing myself to breathe in the goodness of these little moments without judgment.

☁️

Sometimes i find myself falling deeply into poetry accounts on instagram, or getting excited about my plants (& researching what kind of plant baby i could get next 🌱🌱) – and in those moments i feel happiness & lightness & feel some new energy moving in me -and my brain is completely absorbed! – but then i catch myself thinking “how could i be excited about something so small?” ☁️

i catch myself thinking that it’s silly to be happy about such insignificant things ☁️

But if we don’t allow ourselves to find goodness in the present moment, then aren’t we kinda sorta robbing ourselves of some much needed happiness and relief? ☁️

Because there’s so much pressure to always be doing “big” things – sometimes the small things can feel insignificant – & this ideas sometimes brings me down.

☁️

But then i realize that to be able to enjoy the little things is special & delicate and so so significant.

& if we are able to find these light moments, shouldn’t we give ourselves permission to embrace them?

🌤

I love the words “find what feeds you” – it reminds me that finding our own soul nourishment is so important – no matter what it is. 🌤

I hope we can all give our selves a little judgment free break and find those special little moments or topics or ideas that spark our minds or inspire us or that make us feel cozy & comforted – whether or not our instinct is to judge them as not being worthy of joy – bc the truth is, if they lighten our hearts or expand our minds or relieve a little bit of the heaviness , even for a few minutes, they are certainly joy worthy. 🌤🌤🌤

September 4, 2020

Reminder: I Hope you feel hopeful about your life. & I hope you know your life is worth feeling hopeful about. 

September 9, 2020

((pardon the very tired smile 😳)) My body has been a little bit extra wonky (a bit more than usual) these last few weeks. Just last week my sneaky fever & cough returned 🤷🏼‍♀️ – but luckily decided to stick around for only a few days. We still don’t know what I was sick with three months ago when this all started. 🤦🏼‍♀️I felt pretty rough – but it’s all relative – If I hadn’t had a cough I probably would’ve assumed it was just a “normal” flare up!plus, I think the heat is triggering some symptoms anyhow. 👩🏼‍🦰

& then yesterday, my legs felt weirdly full of energy & also pretty uncomfortable – almost like a mixture of growing pains combined with a craving to run? ((even though my body def doesn’t run these days)) ☁️

Sitting & working felt ridiculously challenging. So I took a break and tried walking on my lil treadmill but quickly became too exhausted – my legs felt pretty fatigued and a little painful? almost immediately- despite how much they were craving movement. 🙆🏻‍♀️

And then this morning my dog woke me at 3 am to be let out & once I was up with him I was unfortunately awake for good 😰 there was no going back to sleep despite the exhaustion that I knew must be lingering somewhere in my body. 🥱

Sometimes I still feel a bit of a disconnect with my body & how I support it. Like for instance when I feel fidgety or uncomfortable and feel as though my body is craving movement, but then I struggle to move. Or when I know I need sleep, but feel WIDE awake (when it’s literally still the middle of the night). 🌠

Despite the flares and the ups & downs, im doing my best to stay on my body’s team & trying to care for it and give it what it needs ((but I guess sometimes I just need to do what I can & make do with whatever the day brings)) ☁️

These bodies certainly are complex. Sending extra spoons & energy today to anyone else who is “going through it.”

♥️

September 14, 2020

Last night i stumbled across two YouTube videos on CNN & an Atlantic article interviewing “long haulers” – people who still have covid symptoms or health issues months after their initial covid sickness – and in these cases, POTS diagnoses .

After watching one of the videos I texted my dad: “It’s weird that it’s like breaking news and so astounding … and that they hope she gets better soon… but that this is my life”

The Atlantic article brought up a lot of mixed emotions for me, as in some ways it implies that a POTS diagnosis is tragic and life changing and scary like & then in the other ways its almost a bit minimized – as if there’s always healing at the end of the tunnel. The article subtly implies that POTS may be temporary for these long haulers.

I resonated with the patient’s pain when she said:

“When would I be able to walk up stairs again? Was this the new normal for the rest of my life? After months of anxieties and baffling ailments, how could it be that two of the best solutions available to me were merely … Gatorade and Spanx?“

☁️😳

this is something we all face to varying degrees. A lack of solution, fear & facing a “new normal.”

I have nothing but compassion & empathy for these women who have developed POTS & for what they are experiencing. I’m so sad that more people must live with this. I really hope these women do have an end in sight .

The media often pushes aside these chronic conditions ☁️But they are real & life altering and we are now facing a situation in which many more people could become sick, & maybe not “just” temporarily.

This isn’t to spread fear, but rather to share my hope that the world takes this to heart and that people allow compassion to drive their actions. these articles are another reminder of why it’s so careful to be cautious with covid & to take care of each other. there are safe ways to see friends & family and to feel loved & supported (without risking adding to the spread).

Ending up with a post viral condition is life altering & hard. We really need more light on chronic conditions ⚡️ but we don’t more people with chronic conditions ☁️

September 16, 2020

some quarantine joys & faves! ⭐️⭐️⭐️

🍍tv shows: love on the spectrum, little fires everywhere, trinkets, new episodes of the bold type & queer eye (of course!!)

🍍podcasts: self helpless(recently discovered & then binged this!) – @selfhelplesspodcast betches sup (@betches_sup ) UUP (@uuppod ), girls gotta eat (@girlsgottaeatpodcast ), @galpalspodcast & let it out (@letitouttt =a long time favorite!!)

🍍snacks: chocolate avocado ice cream (cado!) caramel or cinnamon somersaults, bare apple chips, & lil squares of vegan chocolate!

🍍 a few random things: watercolors!!! our lil fenced in yard (so Leo the 🦁 can run freely), diffusing mint & orange for a lil hit or energy, AUDIBLE (Emily Giffin books, beach read, the flat share, American royals, & many many more), oh and also my fave rescue animals: @juniperfoxx 🦊 & last…

🍍pLaNtS & more plants!! 🌿🍃🍀 my giant monstera is my

very favorite , but I love them all so much (& I love learning about them!) #plantmom 🤓🌱

🍃🍃🍃

what are some of your quarantine favorites? ⭐️joys? ⭐️new discoveries? ⭐️ recommendations? would really love to hear!

September 20, 2020

It can feel comforting to seek home in nostalgia – to live in our memories, to replay them over and over again, like little film strips that continue to roll on. But at some point, we have to remember that life is still happening and the earth is still spinning, right here, right now. 🌍At some point, we have to be here for ourselves and for our hearts in the present. We have to find the courage to feel hopeful that the present and the future will offer us just as much goodness as our old memories and our old life – even if this goodness takes on a different or unexpected form. And even if it’s harder than expected, we can try our hardest to find joy amidst pain & humor amidst tears. Nostalgia is safe, but the present is real & it’s ours. And it’s very much worth feeling hopeful about. 💫

September 29, 2020

Spending time alone has been one of the hardest mountains i’ve had to climb in this chronically ill obstacle course. 🌄

☁️

When i first became sick, i spent very long days on my dad’s couch, battling super heavy & disorienting brain fog, and experiencing a lot of loneliness. At the time, I couldnt even think straight, so i just kind of spent most of the day ‘watching” tv (not really following the plot though). My mom had died a few years before this, & i remember this added to the loneliness – knowing that if she were alive, we would have been able to spend the days together. ♥️

☁️

A while later, i was able to begin working, so I spent much less time on my own and my thoughts were more preoccupied. But these past few years, my days returned to being filled with me myself and i when i started working virtually (part time) bc of my health (part time). Most days, my sister would work (teach elementary school) all day & then teach barre @ night ((i envy her unlimited energy))) – and i definitely struggled with these familiar long day. Missing out on all of this human interaction & seeing my sister “getting” to do all of these things & lead a “normal” life def. led to some spiraling thoughts – and brought me down memory lane back to when i was really sick / confused / & down.

☁️

I’ve been working really hard on getting comfortable with being alone – i’ve become obsessed with podcasts and audible, & i try to do little things that bring light into my life – even painting my nails or wearing something comfy that also isn’t an old grungy tshirt. I’ve also tried to make my room a really cozy & light space – with little lights around my mirror & a diffuser and some dried plants 🌱 & other little decorative bits of joy. ✨

☁️

& little by little, being alone has become much more comfortable. I’ve learned that being alone doesn’t have to mean lonely, and that i have the ability to change my thinking ((which in turn changes my feelings)). Ive also learned that just because being alone used to stir up negative emotions doesn’t mean this has to be a pattern.

☁️

Sending extra love and coziness to anyone else who is feeling extra alone or isolated right now. 💜💜💜

October 1, 2020

October is dysautonomia awareness month –

October also marks my 7 year “anniversary” of having dysautonomia / POTS.

☁️

My health slid downhill super quickly in 2012. I was healthy…then I wasn’t.

I knew something was very wrong when I could barely keep my eyes open in a psychology class, after I had slept for nearly 13 hours.

☁️

The very same week, I suddenly went from running 5-6 miles a day to almost collapsing on the treadmill after running for a minute & a half.

☁️

…then it all just went haywire & I began passing out nearly every time I stood up.

☁️

Losing your health is really hard. And I think it’s something we grieved over & over again.

☁️ In some ways, we get used to being sick, but I don’t think the day to day necessarily gets any easier. The emotional heaviness can be harder than the physical toll at times.

☁️

I am grateful that I am in a slightly different place today than I was seven years ago & I definitely do not take this for granted.

☁️

I am also grateful that this illness has brought truly special people into my world. And I’m thankful for the friends who have stuck with me through thick and thin. ♥️

☁️

I stumbled upon these lovely words & they really resonated with me:

“I am going to make a very beautiful life for myself no matter what it takes.”

☁️

There is a whole lot to be joyful about ✨

♥️

Sending love to all those who are affected by or who love someone with dysautonomia ♥️

☁️

October 5, 2020

I was recently facetiming with one of my closes friends & suddenly mid-convo I just crashed -my  on/off switch suddenly flipped to “off.”  ☁️ I told my friend I was crashing & he was really understanding – telling me to get some rest, have a snack, & hydrate (I appreciate how caring he is!) and that we could talk again soon. But it was a let down – we were having such a good/thoughtful conversation & I really wanted to be present ((these kinds of conversations bring so much light into my life))

☁️⛅️

Sometimes after talking/spending time w. a close friend, I feel a little bit depleted (emotionally) – bc I realize that I was exhausted but still hasn’t really been as engaged as I would’ve liked. I didn’t remember to ask what I had been meaning to ask, or I didn’t share something I had really wanted to talk about. ☁️

this can feel a bit isolating, because the fatigue or fogginess can make it difficult to move past the surface level conversations into the deeper waters ☁️

i only recently thought about how this sorta thing can impact life & my

relationships – how fading & feeling low on energy can hinder the deeper / more intentional conversations, and thus the connection. when it is difficult to meaningfully (& fully) engage, I feel as though there is a space between us – and less “closeness” ☁️

On the bright side ⛅️, this is probably why I love writing /texting/emailing –   I can write when the energy hits – and I can connect with others when my mind feels clearer. I can ask questions and engage, and talk about all sorts of things – and don’t tire out quite as easily (because there’s not as much of a time restraint !) it’s loads easier to be open & to be fully present when i’m feeling alive and alert 💡

It 100% goes w.out saying that I feel so grateful for the friendships / relationships in my life – I feel lucky & thankful to have some of the kindest souls in my world 💕

Moving forward, i hope I can work on on strengthening these relationships & being present for my friends, as much as possible – so in the mean time, I’ll be brainstorming on how I can show up more fully ♥️

⛅️

A few ideas below & would love to know what you find helpful if you relate! 💜

October 7, 2020

For a few months last year, I remember feeling like I had made progress with some of my symptoms. My energy level & stamina had increased, and I was able to do more physically. I enjoyed longer walks in the woods with my pup, and an overall feeling of a little extra boost in my mood.☁️

But then, out of the blue, an older symptom made an appearance – insomnia. This seemingly more innocent symptom actually tends to have a greater impact on my health and emotional state than most of my other symptoms. It can be quite a monster in how it makes us feel physically and emotionally. As the insomnia lingered on, I felt as though I were trapped in a fatigued cloud of disorientation, with a rapidly beating heart race. It was almost as if I were running a race while half asleep. Both my body & mind were overwhelmingly exhausted, yet I couldn’t seem to get any sleep. I continued to wake up to the glowing lights on my alarm clock reading 3 a.m., day after day. ☁️

At first, I found myself trying to figure out the “why” behind the insomnia. What could be triggering this sleeplessness? Was I doing something “wrong?” I knew that something in my body had to be a little off, or something had to be triggering this sleeplessness. Was I doing something “wrong?”

In reality, maybe there was some sort of biological reason for this flare up, or maybe this was just a season in which my body was struggling a little extra. Perhaps my autonomic nervous system was responding to something environmental, and thus preventing me from getting deep & comforting sleep.☁️

Either way, when these days & nights took over, I began to question if I had actually made any progress after all. I had been feeling so good, but now I worried I was losing all of my progress.☁️

I had to remind myself that everything comes in waves, and flare ups & changes in symptoms do not negate the progress we have made. Even though it can feel as though we are sliding back into old symptoms we thought we had healed from, in actuality, we are just revisiting them.

One bad hard day or month or even year doesn’t mean we are regressing. Though it feels frightening when old symptoms flare up, it does not erase how far we have come. ☁️

Just as we take the good days lightly, we can also take the not so good days lightly. We can let them come & go, and know that our bodies are in constant flux. Sometimes our bodies re-visit old symptoms even when we are healing. The presence or the absence of symptoms does not negate the progress we have made. ☁️

And keep in mind that tomorrow is not defined by today’s symptoms. Let one hard day be just that – one hard day. ☁️⛅️

October 12, 2020

Sometimes I catch myself thinking “but ___ has it worse” or “you shouldn’t be struggling so much.”

☁️

I remind myself that this belief is not supportive of my wellbeing in anyway, yet, at times it can still be difficult to shift out of this mindset.

☁️

I stumbled across a perfect little quote yesterday that really widened my perspective; “whether you’re drowning in two feet of water or ten, you’re still drowning.”

☁️

These words are so deeply true. When we compare our pain to the pain of others,we often invalidate the very real feelings of pain we are experiencing – simply because we don’t THINK our own pain is as justified as the pain of others. We minimize our experience because we believe others have it worse.

☁️

However, these words so beautifully depict how pain is pain is pain. if something is painful or challenging or difficult for us, then it IS painful. If something is hard or hurts, then it holds value. It is worth acknowledging and validating.

☁️

We can acknowledge the pain of others while also not minimizing our own pain or suffering. We each have our own experiences and our own perceptions. And while some mountains may look bigger, we can still acknowledge that we, too, are climbing.

☁️

…& the very same goes for joy – we can feel joy at something no matter how big or small it may seem. Joy is joy is joy.

☁️

Your story is important.

⛅️

October 18, 2020

Loving this cool feeling (and scent) of fall in the air & always love when we have pumpkins scattered around our home!  🍁🌿

Unfortunately my pesky (lingering) virus symptoms (from 3 months ago now!) have decided to flare back up again (more often than not these days) & I can’t seem to shake off these headaches (and eye pressure) & this cough! I’ve been checking in with my doctor – he feels that there’s not so much we can do about it right now besides monitor things (& get blood work in a few weeks). The cause of this is still a bit uncertain 🤷🏼‍♀️-  2 docs said it was probs covid back when I initially became sick (though i did have a negative test), one said a random virus (🤦🏼‍♀️), & one said he truly didn’t know but suggested it could perhaps relate to MCAS & crazy high histamine levels ((but these levels could have been triggered by the illness too….). 🌿I think we are all a little bit too familiar w. the uncertainty we sometimes face with our bodies & our health – we get used to vagueness & ambiguity. ☁️

One lil blessing in disguise is that it does feel like expectations are a bit more relaxed these days so we can more freely take our time when we need to ((even though the world has kinda been speeding back up again around us.. which is whole other confusing thing)).

Because i’m staying “isolated,” the main impact of being (extra) sick is that I can’t get my energy out so well as exercise has been pretty rough ☁️ But I know this comes in waves, so hopefully I’ll be back on my recumbent bike 🤓 & back on some autumn walks soon. 🍁 Last week I really enjoyed some long woodsy walks with my dad! My body surprised me

1. how far I went! I’m  really hoping that these will become possible again soon! The cooler weather def makes standing up & moving a lot easier 🍁

🌿 in the mean time, I’m going to try & focus on the gorgeous fall weather & make sure i get a little fresh air with the puppers, &  continue to take it day by day 🌿🍁

on the bright side, my lovely lovely friend will be visiting me soon & we will be enjoying cozy oatmilk lattes on the porch! ☕️I’m grateful that she accepts me in all forms (even when im a little extra Ill) ♥️

October 21, 2020💕 

Love my new medical unicorn shirt from @fusedwithlove !! 🦄 definitely feeling more & more like a complicated & confused unicorn these days 🤷🏼‍♀️💜 though health things are v. up in the air & though the flare ups are a little bit extra frequent, trying to find peace & inspiration in art, words/writing/reading, plants, podcasts, creativity & lotsa curiosity. 🦄 reminding myself to focus less on the “shoulds” & more on the “coulds.” 💕

Sending energy & spoons and gentle permission to follow anything that sparks joy (without that anxiety provoking judgment 🤍)

October 28, 2020

It has been through writing that I have been able to slowly understand and accept this chronically ill life. At first I used journaling to work through all of the jumbled and overwhelming thoughts in my mind and to try to make sense of what life could be like now that I had lost so much. ☁️When I read these thoughts now, I see someone trying desperately to make sense of a messy and often painful world. My earlier essays and snippets of writing were sad and confused – they were full of mixed emotions and heavy pain. ☁️These entries reflect a time when I felt like the world would stay permanently dark. But in time, the accounts of heartbreak and the sadness were accompanied by little joys and words of gratitude. ☁️Writing has taught me that there is always so much more to life and to people than what meets the eye. It has allowed me to look at the world from a fresh perspective. ☁️But the greatest gift it has given me is the understanding that life can still be beautiful and valuable and meaningful, even if it’s exhausting and heavy and even if it’s incredibly different than I imagined it would be. ☁️

October 31, 2020

Happy Halloween from just a couple of narwhals! 🐳🐳

☁️

((Halloween is definitely the perfect excuse for a onesie))

☁️

We visited my sister’s 3rd grade virtual classroom and they loved seeing my little 🐳 all dressed up!

☁️

How are you celebrating ?

Any Halloween movie recommendations ? 🤍

🐶🐳🍁🍃

November 4, 2020

☁️ I stumbled upon @thisthingtheycallrecovery ‘s post this morning – “learn in the ways you are able” & I REALLY resonated with these words – they brought comfort & inspiration. 🌟 I struggled through school with undiagnosed adhd until I was about 18. In high school, i remember working on homework ‪from 3 pm until midnight‬. each task would take me forever bc I struggled so much with focusing & with absorbing the content. my mind would wander & I’d become completely exhausted, & I would always feel so frustrated when I couldn’t comprehend the readings. I needed to take breaks, but the breaks made it hard for me to return to my work & refocus my attention 🤦🏼‍♀️☁️ I also remember coming home from school feeling completely exhausted , drained, & v. moody (luckily I was home alone!)bc focusing & trying so so hard was really tolling. ☁️ When I danced in high school, I could do each dance move, but  was often the very last one to get the whole routine down – I couldnt seem to learn & remember everything nearly as fast as everyone else ((which relates to working memory)) ☁️Feeling like I couldn’t absorb or understand information despite how hard I worked was stressful & anxiety provoking – I didn’t know I had adhd (so I didn’t understand that I had challenges w. information processing & executive functioning – or that my brain worked a little bit differently) ☁️

 Fast forward to pots & chronic fatigue — these symptoms have further contributed to my difficulties with comprehending, remembering & processing information (etc. etc.). Though this can be frustrated & anxiety provoking –  i think it’s so important to realize that it’s okay to learn differently – be it at a different speed, in a different manner, or in quite literally any way at all. ☁️ we don’t all have to learn the same way – & no way of learning is superior or inferior. We gotta do what feels best to us ((& not beat ourselves you in the mean time)). Though reading is hard for me, audible has been my saving grace🌟 & podcasts have been cozy & educational! (I’m subscribed to 15+ – a little obsessed & they bring me so much joy & allow me to learn in a way that works for me!)

I didn’t know that I was such an auditory learner until the past few years!🌟

I think it’s so important that we each learn what works best for us – and that we give ourselves some grace when we are struggling to comprehend, absorb, or remember information. Finding out how we learn best can be very magical!  (& learning can be through music or pictures or art – not solely through just words) <3 so give yourself some permission to explore how you learn! ⭐️🌟

November 7, 2020

A hard pill to swallow: “have you tried ___?” ☁️☁️☁️

“Have you tried the paleo diet? Or Keto?”☁️

“Have you tried drinking more water? Maybe your headaches are from dehydration”☁️

“Have you tried switching to all natural make-up?”☁️

“Have you tried gluten free or grain free?” ☁️

“Have you tried replacing your medications with natural options?”

☁️ “Have you tried getting off medications?” ☁️

“Have you tried a probiotic or multivitamin?” ☁️

(Have you tried exercising ? Have you tried sleeping more? The list goes on ☁️)

Questions of this variety can bring up a lot of complicated emotions — esp. frustration &/or disheartenment. Though well-intentioned, they sometimes feel a bit belittling or judgmental, (tentatively) suggesting that we aren’t doing all that we can to take care of ourselves (& to support our bodies). ☁️These statements quietly imply that we are giving in to our illness, or that we have the power to physically get better – we just have to “try.” These comments have a subtle way of disregarding how much we do for our bodies day in and day out (SO much) & downplay all the knowledge and awareness we have surrounding our bodies. ☁️

While it may feel triggering when asked one of these questions / given an unwarranted health suggestion, it becomes a little bit easier to wrap our heads around if we realize that these suggestions come from a place of care and love. ☁️Offering advice is a way for friends & loved ones to show that they love us and want us to feel as best as we can. It’s something tangible they can do in a situation that is out of their control. ☁️

((this doesnt mean these comments feel good — but maybe we can remind ourselves to try our best to interpret them as expressions of others caring about us))

(Also: *** not disregarding the benefit of any of these suggestions/lifestyle modifications !! What works for each of us is unique. More so emphasizing the “have you tried?”) ☁️ … one more note: sometimes loved ones offer really useful and healing advice or suggestions – this is very situational! Often the best suggestions come when someone googles our condition & asks questions in a thoughtful& caring way 💚

November 11, 2020

Conversations can be really difficult because of all of the unwritten requirements of socialization, such as thinking of adequate and thoughtful responses, following storylines, asking the “right” questions, providing intentional feedback, and staying present. When I’m feeling particularly exhausted, down, foggy, or dizzy, my biggest struggle is staying present and focused. My mind works slowly, making it difficult for me to think of things to talk about or to say, or ways to carry on a conversation naturally. At times my mind goes blank and I can’t think of anything particularly special (or anything at all) to say. Sometimes I fall into thinking that my contributions to the conversation are anything but meaningful (when I’m tired or when the conversation has gone on for a while), and this leads to me doubting myself and my worth, wondering if my friends are perceiving me as boring or unrelatable.

My ability to engage in the complexity of a conversation with a friend varies from day to day. Some days I am able to stay alert and even enjoy a lengthy conversation with a best friend. Other days, I don’t really have it in me…at all. But it doesn’t matter if I want to have it in me. My body becomes the boss and decides what I can and cannot do. ☁️

I’ve noticed that being more open with friends can relieve some of the anxiety associated with not being able to fully show up. I am working on letting my friends know how I am feeling in advance (prior to a phone call or hangout). This can mean telling them that while I’m looking forward to talking, I do want them to know that I am exhausted, and may not have much to say (may not be on my communication “A-game”), or that I may need to just quietly listen. ☁️ I think this gives us space to show up in whatever form we are in while still finding joy in connecting with a friend. ✨

☁️

November 13, 2020

It sounds a little silly to say that I just recently realized this, but perhaps I recently explored who I was before I was sick – and I realized that I spent a loooot of my life doing what I thought was expected of me. I feel that I followed a path that was already paved for me – & that I always tried to fit into the “expected” mold w.out pausing to question what I actually wanted & loved. ☁️Many times, I think I followed in my sisters footsteps – thinking this was what I “supposed” to do. I made many of my life choices based on her life, because I valued &!looked up to her, and based on what I thought my parents wanted for me (though I don’t think they actually put this pressure on me – Or has so many preconceived ideas). ☁️ Looking back, i notice that I dimmed my voice. I didn’t stand up for myself. I rarely made choices that spoke to me or lit me up. Some moments that stand out to me include – leaving gymnastics behind – something I loved, going to a small small college w. no football team (when really, I loved football), dancing in high school and college (parts of which I enjoyed, but I don’t think this was really “me”). ☁️ I nurture were my passion for animals or animal rights (I never volunteered with animals – though I would have loved to) … (though also allergies 🤦🏼‍♀️) or my interests in art, photography, & so many creative outlets . ☁️ Reaching this realization has helped me to understand the root of some of the anxiety I had – and the uncertainty and decision making struggles ive often battled. ☁️

My chronically illness also interfered with the confusion I experienced – and the identity haziness / connecting with the “ real me” bc it limited my energy & stamina &! My ability to follow my heart and soul into things that I loved ((at first)). ☁️

But I’m realizing that there is still a whole world out there. And even with illness, I am starting to see that there is so much joy and fulfilled & opportunities for curiosity out there 💚 since becoming ill, I have discovered writing & painting, and am dabbling with poetry ! I’m on a volunteer list to foster a little creature & am a vegan as of 3ish years ago. 🐷

I have a pup, and we have two bunnies (( and lotsa of plants)) 🌿. ☁️ Though I wish I could have told the younger me to be more confident in what I loved and what was passionate about, I think life gave me the experiences and the encouragement I need to keep growing & changing & learning. ☁️ perhaps just removing a bit of resistance & following my intuition will guide me to new wonders and curiosities and passions ((that don’t make my heart rate spike 😅))

November 21, 2020

“A cup of hope”

My heart goes out to one of my dearest friends. She has been through four surgeries in just the past few months, yet has not found the relief that she so very deeply deserves. And despite this, she still radiates so much kindness, grace & compassion.

☁️

A few months ago, we facetimed the night before one of her big surgeries – which, I can imagine must have been incredibly frightening. despite how nervous she may have been feeling, and even though she was exhausted & was facing difficulty with speaking, she still asked me how my grandmom was and how I was feeling – the night before surgery! She has such a huge heart. 💜 (and did not need to ask me anything !!)

☁️

I wish I could carry some of the weight that she has been carrying for far too long. and I wish I could take some of her discomfort, and carry this too. She has had to be brave too much of the time lately, and I wish she didn’t have to be so brave.

☁️

If you could keep her in your thoughts, and send some light and hope and love from afar, it would mean a lot.

☁️

Love you to the universe and all around it my beautiful friend – I hope that very soon you find some bright, sparkling light at the end of the tunnel. because you deserve it.

☁️

November 26, 2020

It seems like a strange time to be thankful – with all of the pain and loss surrounding us. yet simultaneously, i think that perhaps this makes it an even more important time to be thankful.

🍁

I’m thankful that my loved ones are safe & well and I’m thankful for all of those who are helping to heal the world.

🍁

I’m thankful for this community, and am sending my gratitude out to all of you . I hope you are each able to enjoy a little thanksgiving pie or treat or even. cup of tea or hot cocoa (or something cozy and comforting)

🍁

And feeling immense gratitude for those who are being safe & careful today – those who are making quiet sacrifices (such as comfort and tradition) and having smaller un-traditional thanksgiving celebrations at home to save the precious lives of others they may or may not even know ♥️

🍁

Wishing everyone comfort, joy, and hope.

🍁🍁🍁

Happy thanksgiving!

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December 3, 2020

the past few weeks have been filled with lotsa ups & downs & in-betweens. Sometimes it’s a lot (& even impossible) to wrap my mind around the two parts of life – the little home inside my house – my little bubble – & what’s happening on the outside – the storm that’s raging all over the world.

☁️

I’ve been extremely careful this entire pandemic – my doctor said I could be “at risk,” and also, moreover, I truly did not want to have anything to do with the spread of this virus. I didn’t want my actions to cause a domino effect and hurt someone else. Or cause any more pain or suffering than what already exists .

☁️

despite my very best efforts to stay as safe as possible (aka staying in my house and taking walks), covid founds its way into our home.

🌍

I have no intention of placing blame on anyone, as it’s a scary a pandemic & quite a sneaky virus ((& we are all just doing our best right now )) but one part of our bubble had a teensy hole in it.

☁️

It seems wild to me that I got sick with all of the caution I was using. But I’m so thankful that I’m okay- and that I was lucky. I had a lot of blackouts and near fainting episodes , but still was able to enjoy some Christmas movies on Thanksgiving.

☁️

This is day 11, & I still have a fever and headache , but my doc put me on antibiotics & steroids immediately and I feel so thankful and so lucky that both of us didn’t end up in worse situations.

☁️

I also feel immensely relieved that I didn’t spread this to anyone -so in this respect, all of the isolating paid off ☁️

I still plan to stay in & be cautious bc I want to help with humanity & be a part of the healing.

☁️

I think my chronic illness gave me some experience with staying in. It’s comforting to know others out there are doing the same.

☁️

Nobody can be “perfect” at a pandemic – we each have to figure out what “works” for us.

All we can all do is what we can do 🌏♥️

December 8, 2020

something i’m trying to work on is loosening the reins a bit on what my “plan” for each day is and instead seeing what the day holds for me. or what each hour has in store. i find that when i have a strict “to do ” list, i tend to feel let down by the end of the day – particularly when i don’t get the chance to check off every item (for one reason or another) – & then i feel disappointed or like i “wasted” the day ((I have to remind myself that this is far from true)),

☁️

yet, without a to-do list, (and with a bonus little ADHD plot twist), i feel all over the place & up in the clouds (also thanks to POTS). a small gem i’m noticing though, is that i don’t have to give so much value or emotional energy to whether or not i complete my list. i can shift my perspective and meet whoever i am each morning when i wake up – exactly where i’m at.

☁️

little tools im beginning to use: creating a list of important (& very do-able) tasks or activities (including things that bring joy) and then creating a “in progress” list – a list of things i’d like to give attention to, but with no added pressure to put that little black check next to them immediately

☁️

i’m also making sure to pave a bit of “creativity” time into each day – and shifting the focus from producing & creating to both creating (“output” – painting, writing, drawing) AND exploring (“absorbing”- listening to podcasts, music, audible). realizing that there’s so much value to what we take in and to what we put out, and we aren’t set up to always just do one or the other. i think putting pressure on creativity really causes a massive block!

☁️

hopefully w. little mindset shifts, i can release a little bit of the perfectionism / anxiety that come with always trying to do x y & z. every day is different, and we wake up different everyday.

☁️

hopefully you are also working to be gentle with yourself and meeting the day as you are instead of as you (think) you “should” be

☁️

☁️

December 11, 2020

I used to be able to sleep about 3 hours and feel the same as I would if I slept 7 ((not sure if this is a good or a bad thing ? 🙆🏻‍♀️)) .. but it was def easier to cope with. 🌔🌔 but now, a choppy half-asleep night of 3 or 4 or 5 hours def does me in big time.

☁️Though it’s a dreadful when your mind & body are half asleep and half “electric-feeling” (does anyone feel this sorta sensation?), I do think a little bit of it is a mind game related to expectations. Not all of it, by any means – definitely feeling rough – but I think I’ve conditioned myself into seeing the days following poor sleepless nights as “bad” days & days that I want to avoid at all cost (bc I don’t want to experience the discomfort or the agitation or the tachycardia)

☁️

But maybe figuring out something “special” or comforting to do during these post insomnia days could make them a bit better. Maybe something distracting or exciting or just something cozy And maybe reminding myself that I might not actually feel so bad – that our bodies & minds don’t always respond how we expect them to – will help me make these days a lil more bearable. ☁️✨

Releasing expectations & chasing the little joys. ++ Thankful for Taylor swift for making this post-insomnia night a little bit more sparkly 🎄✨ ((on the bright side, started listening at 4am 😅 insomnia or Super fan, who is to say??))

ps – thinking of one of my dear friends who is having a lot of these nights in a row! Sending comfort and energy & peace your way soul sista ♥️

.

.

What helps you with these exhausting (or wired or disoriented or flare-up) lack of sleep related days ?

☁️

☁️

December 15, 2020

I think these 11ish months have most definitel brought out my introverted-ness 💁🏻‍♀️ … making me realize that I might be more of an introvert than an extroverted-introvert ? (Though I’ve never really known which kinda “vert” I am). I miss seeing friends & I miss home goods 🙆🏻‍♀️ & cafes & girl time, but I’m thankful I am beginning to find happiness in little things & joys in small moments ♥️ even including when I’m by myself ((which has been a life-long struggle)).☁️

I think this pandemic has has brought me a small gift in that this time has made it easier for me to feel comfortable on my own – at first it was bc It felt reassuring when others were in their homes too. but now I’m realizing that I don’t actually have to think about what other people are doing of it doesn’t change my life – if it only adds anxiety to my thoughts . It’s okay to be home a lot – and to give myself permission to make my life at home still feel good.

☁️

I think I had a lot of resistance to this before. I think I compared too much and put my energy into what other friends were doing that I wasn’t doing. And I see now that It’s okay if my “normal” is different than a non-chronically ill person’s “normal.”

☁️☁️☁️

There’s so so much pressure in this world – pressure that we don’t always actually need – pressure that we think is there but is only there if we give it value. why don’t we lift some of what we don’t need to carry off of our shoulders & put it down. And embrace our lives as they are.

☁️☁️☁️

though it’s been a really sad year on the outside, I’m grateful that it’s brought a lot of shifts in my mindset. Some of this has been through all of the beautiful and honest words and posts I’ve seen in this community . This year has had a quiet way of showing me that I can do life in whatever way I choose – that I can find joy in something that I used to run away from – and though I feel a little bit distant lately, this year has helped me to remember that the people I love and the people who love me will hopefully help me to make this kinda life the best life. ♥️

☁️

Do you have any expectations you’ve recently challenged?

December 20, 2020

I was listening to holiday music today 🎄 & Spotify shuffled to Feliz Navidad. I immediately felt warm & cozy while also feeling the familiar dull ache that comes about sometimes when I think of my mom. We used to sing this song (loudly) on the radio together in the car 🥰 – we would always try to split the octave at the end of “from the bottom of my heart” (though it never sounded how we wanted it to 💁🏻‍♀️💗). 🎄My mom faced a lot of hardships in her life but was such a joyful, funny, strong, kind & wonderful human being. ✨✨✨The last time we “performed” feliz navidad was nearly 10 years ago … which seems like a very long time. Time flies and also crawls simultaneously .

🎄

I know they always say holidays are the hardest – and idk whether that’s true or not, but I do notice her absence is a little bit more present on Christmas. 🤍

Every Christmas – to this day – has felt off, like something is missing – and I feel as though the day will never be quite as cozy or hold quite as much spirit or light as it once did – no matter how many years pass. There’s something about missing someone that makes feeling the magic a little bit harder.

🎄✨

It’s a different Christmas this year – and I know a lot of people are facing hardship, loss, loneliness, or just a lot of change. And I know that a lot of us are also facing illness and flare ups and exhaustion. The holidays can be magical but they can also be quite hard and tolling. Perhaps we can soften our expectations this year and let the day be a day – and let it be a day that hopefully can bring comfort in some form or another.

🎄

I hope that everyone can find at least a small touch or a little moment of peace or hope or joy on Christmas or during these holiday days. I hope the heaviness feels just a tad bit lighter if this year has been hard for you ✨

heres to hoping that the universe will send us each a little extra light during this season – and that we will feel a little extra love even if we aren’t with our loved ones this year.

✨🎄

🎄✨

December 24, 2020

merry christmas eve <3 <3 listening to christmas music & painting with watercolors, & trying to keep my pup from unwrapping all of the gifts **& stealing the ornaments off the tree ((i thought this was a cat thing but nothing is surprising when it comes to leo)). about to bake a frosted vegan gingerbread loaf for tomorrow! (recipe by @chocolatecoveredkatie )

🎄

my sister gave me this lovely mug several years ago when things were especially hard & to this day, the quote is still one of my very favorites. It reminds me that sometimes things take time & also that we are still blooming & becoming & growing even when we are in the dark. (…even when it feels more like pain & less like growth). It also makes me realize that we might not always know when we are butterflies, unless we take a step back & realize that we are still here, despite life being really, really hard at times. I think sometimes we don’t celebrate all of our small victories that are actually quite worthy of celebration. ♥️

🎄

No matter the circumstances you are surrounded by, I hope that tomorrow brings you a touch of lightheartedness and peace & I hope you can remember all of the things you’ve overcome this year, all of the love you’ve spread this year, and all of the times you’ve smiled this year. I hope you can see that you are a resilient butterfly who deserves gentleness and love.

🎄

& I hope you can enjoy something festive – a baked treat, a drink, or even a holiday song – and that you can feel a bit of comfort & hope whether you are alone or with others.

🎄

I hope the Christmas spirit warms your heart & your mind and I hope that you have a special holiday amidst a hard time. ♥️

🎄

🎄

🎄

December 24, 2020

merry christmas eve <3 <3 listening to christmas music & painting with watercolors, & trying to keep my pup from unwrapping all of the gifts **& stealing the ornaments off the tree ((i thought this was a cat thing but nothing is surprising when it comes to leo)). about to bake a frosted vegan gingerbread loaf for tomorrow! (recipe by @chocolatecoveredkatie )

🎄

my sister gave me this lovely mug several years ago when things were especially hard & to this day, the quote is still one of my very favorites. It reminds me that sometimes things take time & also that we are still blooming & becoming & growing even when we are in the dark. (…even when it feels more like pain & less like growth). It also makes me realize that we might not always know when we are butterflies, unless we take a step back & realize that we are still here, despite life being really, really hard at times. I think sometimes we don’t celebrate all of our small victories that are actually quite worthy of celebration. ♥️

🎄

No matter the circumstances you are surrounded by, I hope that tomorrow brings you a touch of lightheartedness and peace & I hope you can remember all of the things you’ve overcome this year, all of the love you’ve spread this year, and all of the times you’ve smiled this year. I hope you can see that you are a resilient butterfly who deserves gentleness and love.

🎄

& I hope you can enjoy something festive – a baked treat, a drink, or even a holiday song – and that you can feel a bit of comfort & hope whether you are alone or with others.

🎄

I hope the Christmas spirit warms your heart & your mind and I hope that you have a special holiday amidst a hard time. ♥️

🎄

🎄

🎄

December 27, 2020

I was thinking about some of the good things that have come out of this year and one thing I’m very thankful for is joining this chronic community 💗

I’m so very grateful for this community & the friends I’ve made and the stories I’ve read. It’s given me the courage to be more open and to share my thoughts in a safe & welcoming space. ☁️☁️☁️

I haven’t been quite as engaged as I would have liked to be this year – as I was kinda overwhelmed with work and school (& was running low on spoons more often than not! ☁️) but I’m really thankful for those who have reached out to me and to the dear friends I have made.

💗

I know we aren’t obligated to be “inspiring” when we have chronic conditions – I know the idea of this can create a whole lotta expectations – but the truth is, whenever I hear about any of your experiences or stories or thoughts they truly do inspire me, because just living with a chronic condition (and constantly climbing mountain after mountain) – is inspiring to me. it’s inspiring that you’re hanging on & moving through this world with grace and strength (even when you don’t feel graceful & or even wheneveryting really really sucks ) – because just hanging on is an act of courage and one that truly is inspirational (on good days & tough days)

☁️

I guess I’m just really thankful for everyone that I now know and for everyone that I read the words of everyday even if I don’t always comment or reach out. ☁️I’m just so glad that in the beginning of this pandemic I decided to create this account bc I was really hesitant & nervous to let my illness be a bigger part of me than it already is but now I see all of these beautiful souls & I have a whole lot of gratitude . And I understand that my illness does shape me and admitting that is okay.

☁️💗

So here’s to next year being a year of connection – I hope to be more connected to new & old friends and to deepen the connections I’m blessed to have.

☁️☁️☁️ so to sum this up ——I’m really thankful for everyone ♥️💜💗

(and ps – Always feel free to reach out! I’d love to talk ✨)

☁️

🤍

December 30, 2020

I realized a lot of the anxiety I used to carry related to was I doing enough or was I doing the “right” things. Bc though my body changed w. my chronic condition, my mind took a bit longer to catch up. Rather than accepting the changes in how I was feeling physically and what I was able to do / I instead told my body to catch up – to keep up – with my old expectations (my pre-chronic illness expectations). I pushed my chronically ill body & mind (foggy & fatigued) to try to do the things I thought I was expected to do – both in terms of my own standards for myself & in terms of trying to meet (what I thought were) society’s expectations.

☁️

Anxiety grew out of my inability to keep up.

☁️

Even before becoming chronically ill, my mind was often filled w. “shoulds” – I rarely approached life with gentleness or flexibility, or any sense of self-compassion.

☁️

In more recent years, I’ve slowly been able to shift my thought patterns & mindset – through (very tiny) baby steps & through overcoming (a whole lot of) frustration.

☁️

But this year has actually brought me a gift – in many ways, it has showed me that without all of the external pressure / expectations, and w. a bit more calm & ease in my environment, I’ve felt great relief. I’ve focused much more on what feels good for my body and mind. I’ve let go of the comparisons.

☁️

And while a large part of this change in my mindset is probably a result of knowing that everyone else is in the same boat (& feeling as though our lives are sorta similar in some respects), my hope & intention Is that I can carry this mindset with me even when “normal” life returns.

☁️

I hope I can realize that I don’t need to do what others are doing – i can live life in whatever way works best for my body & my mind. I can find my own peace & calm & joy by living a quieter life at home, and still find connection and inspiration and comfort. This is kinda an obvious realization, but perhaps the real change that I’m learning is that it’s up to me to give myself permission to live in a way that allows to me be myself & that lets me find grace and fulfillment admits illness and challenges. ☁️

Any pandemic realizations for you? ☁️♥️

December 31, 2020

I wrote a little list of intentions for 2021 ((most of which I come up with in the shower 💁🏻‍♀️)) & then I realized that they could all fit under one bit cozy word: joy. I hope to live with joy in 2021 – in connection & in deepening relationships, in movement (with no expectation), in self-discovery (in embracing uniqueness and releasing judgment), in body kindness (& appreciation), in in curiosity (over fear), & even in stillness and in time spent alone. ✨ & I think this means practicing forgiveness & approaching life with gentleness ((esp in moments when joy is too far out of reach)). ☁️ though of course some days will be tough & draining & full of symptoms & fatigue, I hope that on these days I can remind myself that there is no limit on joy, & it is still out there waiting for me when I’m ready to find it. ☁️✨

Byeee 2020. Hello 2021. ✨☁️ hello joy.

January 5, 2021

New year…same you? (Same me?)… but still becoming & evolving ☁️ ☁️ I’ve been thinking about New Years resolutions & intentions and realized that maybe they don’t have to be inherently good or bad. Maybe they don’t have to be either problematic or absolutely necessary. I think that they become less inspiring & less hopeful bc they have a subtle & sneaky way of making us feel like we need to reinvent ourselves. Like we are in desperate need of being repaired or fixed up – like who we were the past 365 days was not good enough for the next 365 days ☁️✨ but I think that there can also be some good in creating aspirations and intentions and dedicating mental energy to the road ahead – and to finding ways that we can move forward with joy and gratitude and create a pathway that is both full of new energy and change, but that also doesn’t neglect or reject all of the days that shaped us into become ourselves in the present ☁️✨

Maybe intentions become a bit brighter and a bit more graceful when we choose becoming& growing over abandoning our “old” self. ☁️

Or maybe meaningful intentions are all about releasing the pressure to re-invent ourselves (or upgrade) and instead embracing the magic of becoming more ourselves. ✨ maybe they are more about just setting our sight on joy or fulfillment, and less on a checklist of changes we are “required” to make. ☁️

Moving into this new year, I hope we can find gentleness & grace & permission to be whoever we are in each moment – with less judgment or shame, & more curiosity and discovery. ✨

☁️☁️☁️

January 12, 2021

My monstera has had a growth spurt! She may need a new pot again soon 🥰 feelin a little jumbled lately so just going to go w. The flow and share whatever comes out 💁🏻‍♀️ The past week has been a bit of a struggle.. starting w. labwork that left be extra fatigued and dizzy then a night of insomnia ((well a few nights )) …& then a very very stormy flare up with all of the shivering cold clank was and sweating and losing breath and heart pounding and nearly fainting even when lying down ⚡️⚡️ Sunday was probably the most difficult day I’ve had in a very long time & it was a bit scary bc it wasn’t just a brief “episode” – I did panic a little bit as I didn’t know if this was new and/or what I would do if it didn’t calm down – I usually feel sick most of the time but don’t have quite as bad sudden attacks as I did years ago ☁️ Ive def. been a lot lot sicker since maybe June ? – so i am doing a little investigating w. my doc 💁🏻‍♀️🩺. but am trying to be gentle w. expectations as there’s never one magical answer that ties everything together. ☁️ ☁️ a very weird reality (and normality) w. chronic illness is that you can’t just go to the doctor and ask for a solution or a quick “fix” – & oftentimes, feeling sick is “normalized” by doctors and even by friends and family . So we just have to make do & hope we are safe & “okay-ish” ☁️✨☁️ I think sometimes this is why it’s nice when people check in and ask how we are doing, or express appreciation when we show up (in any way) when we are fatigued or heavy w. symptoms ☁️ it can mean a whole lot & lift us up ☁️✨ bc we are often sicker than we may seem, and don’t always have relief in sight. So knowing that others are there and rooting for us is really encouraging . ☁️

((& side note – big realization that came about is that sometimes it isn’t ideal to have no bathroom on the middle/main floor — 😬stairs can be quite a trek first thing in the morning (& anytime of day tbh). I always wonder why stairs never get any easier 🤷🏼‍♀️ Why don’t our bodies adapt over time ? It remains a mystery. ))

☁️ 💚sending light & joy 🤍💜

January 18, 2021
((New hair! & chopped it off myself 💁🏻‍♀️💁🏻‍♀️))

—

✨⚡️ lately I’ve been trying to figure out how I can better

support myself & approach life w. a bit of extra gentleness while also trying to meet expectations – those that do add lots of joy to my life but also simultaneously deplete me ⚡️

~~ trying to find that very delicate (& sometimes nearly impossible) balance between listening to my body & supporting it in whatever way it needs in the moment while also (simultaneously) keeping a regular work schedule // routine & getting my work done in line w. a definitive schedule.

☁️ w. some recent flare ups, the line between pushing too much and pushing an “okay” amount becoming a very fine line

⚡️ I was listening to a seminar for a chronic pain workshop for work yesterday & it was discussing learning how to find a safe space and how to this calm your nervous system (& autonomic nervous system) – & it emphasized being more aware of your nervous system – what it telling you and when/why it is triggered or flaring up so you can learn how to support it and bring it back down – and thus eventually reduce pain/symptoms/fight or flight reactions ((this is def a very broad takeaway of a lot of info but it really resonated w. Me))

☁️⚡️ bc I realized that I don’t really entirely pay attention to my nervous system – which is kinda ironic in some respects. Of course

“hear” it and “feel” it all the time, 24/7 — but I am also in a place (for better or worse) where I’ve accepted my all over the place nervous system because this wild up & down electric state kinda defines my main chronic condition ((dysautonomia)).

⚡️ but more importantly, I don’t think any of my doctors have ever really spoken to me about the mind body connection- or even really tried to empowered me ?

☁️ I’ve had wonderful, caring doctors but they never mentioned how some of chronic illness is so deeply wired by our experiences and our thoughts – by our body’s need to “escape.”

☁️ I’ve always seen chronic conditions as connected to our minds & kinda programmed in, but I’ve never been given practices or approaches or new mindsets to adapt to really “work” on this connection.

☁️ I definitely don’t think this is all or nothing – I know all of these symptoms started w. a seemingly innocent virus. But I also realize that maybe my body wasn’t quite ready to defend against this because the few years before becoming sick had been so immensely difficult and so emotionally tolling. ☁️☁️ So after all of this rambling, I think I just want to explore a bit more – and also be more aware of what my symptoms are telling me . ☁️☁️ I don’t have a solution to balancing work obligations & health, but I do think ((at least)) realizing that Im often pushing my body even – when it’s very unhappy – might be a good place to start . Maybe small changes can go a long way ?? ✨

January 25, 2021

Identifying as sick vs. healthy can feel a little bit loaded 🤷🏼‍♀️ ~~ and it feels black & white, as though we are required to stay within the limits of one identity or the other ~~ of course I realize that by your typical societal definition, I’m no spitting image of “good health.” 🙆🏻‍♀️

my heart rapidly accelerates & I lose my breath walking up the stairs (& sometimes even feel like my body is about to collapse). I eat a lotta salt to keep my blood flowing. I take a lotttt of medications & supplements – I run a small pharmacy in my room 😅& I can’t do a lot of things the old version of me

could do 🤷🏼‍♀️ but I don’t want to always describe myself as”Ill” or “sick” because I put so much energy & intention & thought into taking care of myself and truly prioritize my health. I do all that I can to nurture my body and to be as healthy as possible (w. gentleness of course) even though technically I am “sick.” ☁️💁🏻‍♀️And though of course healthy for me looks different than the mainstream / societal definition of healthy, but I truly put all that I can into my wellness/wellbeing ((which sometimes looks nothing like “well”)). ☁️All of this is just to say that I think we can choose to identify with both healthy & sick, simultaneously ((if we want to)) – because we should give ourselves some credit for all that we do to keep our bodies going! 💜

–

–

Though maybe it’s a little counterintuitive, I truly don’t believe it need to be either/or – one doesn’t have to erase the other. ☁️☁️☁️ I am chronically ill but in my own way, maybe I am healthy too. ((…and maybe I’m still working on embracing this)) 🙆🏻‍♀️

–

((& also this of course goes w.out saying …

➡️ it’s totally up to you how you choose to identify & or describe yourself. You have the power here & you get to define you. This is so personal to each of us. I have so much respect for anyone & everyone who chooses to embrace any illness / wellness etc related identity))

–

➡️Where do you fall?

February 5, 2021

A little hello from the two snow creatures <3 

I’m visiting my dad this week & he just got a deck – which is perfect for my little ones! Oatly (bunny) kept coming in and out of the house to get in the snow! He’s a very relaxed little guy – and just rests most of the day, but as soon as he gets outside he comes alive – it’s very precious. <3 and Leo kept following him in and out! Leo is terrified of all dogs but he always loves the bunnies 💁🏻‍♀️ maybe he needs a teensy tiny dog friend? 😌 that he thinks is a bunny?

—-

I love how much comfort animals can bring 😌 and distraction from symptoms ! I would have a whole sanctuary of them if I could ☺️

—-

My brain is a lil worn out from the week- ((still working on finding some sort of balance)) so for now I think I’ll just share some lovely encouraging quotes from a beautiful book. ♥️

—-

Thinking of a very dear friend right now who is on my heart – these words remind me of her grace & strength & kindness. ♥️

—

from @charliemackesy (from “the boy, the mole, the fox, and the horse”) 

☁️

“Sometimes” says the horse, “every step you take is a victory”

☁️

“The clouds are getting darker,” said the boy. “Yes” said the horse, “bud do you see they are moving? Sometime soon, they will leave.” 

☁️

“This storm is making me tired,” said the boy. “Storms get tired too,” said the horse. “So hold on.” 

☁️

“I can’t see a way through,” said the boy. “Can you see your next step?” “Yes.” “Just take that.” said the horse. 

☁️

“We are out of our depth.” said the boy. “Just breathe” said the horse. “and hold on”

☁️

“Always remember you matter, you’re important and you are loved, and you bring to this world, things no one else can.” 

☁️

“We have a long way to go” sighed the boy. “Yes, but look how far we have come” said the horse. 

♥️

February 7, 2021

So recently you could say I’ve been on a toast kick 🤓 as in jam on toast is my new favorite thing ((yes a little late to the toast game)). But then last night I had a crisis moment in that I couldn’t open the jam container! I have one of those grip things to open jars with – and I tried so hard but couldn’t get it and sadly I was so bummed bc I was ready for my berry jam! This probably seems insignificant to share but it was a sneaky little reminder of my lack of strength.

—

Whenever I used to see my pots doc he would take my blood pressure and comment on my weak arms! A little insulting bc he knew I couldn’t really do much in the way of working out!

But I realized lately that I’m missing having that challenge and excitement over movement and over feeling strong.

Running used to bring me so much joy and was such a helpful outlet for anxiety or stress. I miss the freedom it gave me and the connection it helped to nurture between my mind & my body. And I really miss the post run feeling of endorphins.

—

While I know that biking on my recumbent bike is really good for my body and has truly helped me in so many ways, it doesn’t bring me the same sort of feelings as running did. But I think I subconsciously always compare my movement now to how I used to move, when I ran daily and danced in college. I see any sort of movement now has inferior – or as not really significant in my life.

—

But I think this mindset is holding me back from appreciating my body and appreciating what it can do for me. I don’t think I give myself credit for the movement I do everyday even when it’s immensely difficult ! I also realize that I truly miss feeling strong.

—

While I know running is not an option (and yes I’ve tried 😰 & my body has been very upset with me when I’ve done so)), I think I need to shift my mindset again into realizing that it’s okay to try something and to do what my body can do, rather than feeling bad when I can’t do what others can do or what the old me could’ve done.

Over the past few years I’ve dabbled in strength based movements at home – but when I’ve only been able to do the bare minimum, I’ve quit in frustration bc I feel like there’s no point.

—

All this is to say that I think I want to open my mind to accepting whatever I can do – and appreciating my body for whatever it is up for each day. Maybe this means trying light hand weights again , or bouncing on my trampoline for 1 minute at a time – and not feeling bad for being unable to do more (which is my normal thought process 🙆🏻‍♀️) 

I guess the word that comes to mind is acceptance and enjoyment and seeing how I can nurture my body while not allowing anxiety or frustration to bring me down. And I am very thankful I can ride my bike and walk and I don’t take this for granted. I just realize I have put up a block to other movement bc of how many times I’ve been let down .

—

So here’s to moving creatively and also accepting when moving isn’t on my body’s daily agenda. 💙

–

((also perhaps the jar really was just an especially difficult jar to open))

February 17

((old but cozy & special pic ❄️))

pondering lotsa things these past few days ☁️ a little extra bummed as I made the decision to stop something I was really excited about – bc my body was taking far too much of a toll – & couldn’t handle it anymore

☁️ It’s so tricky to find the exact right balance between pushing through your symptoms an “acceptable” amount for something you love, vs pushing too hard & knowing that your body is slowly crashing☁️ – and it’s not a decision “most” people have to constantly make. ☁️🌨

Im sure it’s not just me who has found that a ((giant)) theme of this chronic life is letting go – letting go of things & experiences we so badly want to do…things that our “healthy” selves could handle. ☁️☁️

but sometimes this sneaky little rebellious voice comes outta nowhere & whispers “just go for it” …”ignore the exhaustion & the headaches & the flare ups and the scarily quick pulse ” … “ignore the fact that all you want to do right now is lie down on the floor and cry out of frustration” ☁️☁️ …. bc that little “push harder” part of my personality is still in here. ☁️

No matter how many losses we’ve been through, it still feels so daunting & frustrating to have to make peace w. leaving things . It can feel hard to appreciate our bodies when It feels as though they constantly hold us back

☁️

But I am extremely thankful & appreciative of the things that do work out. I’m learning to look at situations creatively- & to search for small pockets of joy in unexpected places.

☁️

It’s okay to let go & its okay to grieve the losses. It’s okay to be frustrated over & over again & I truly don’t think there always needs to be a silver lining. But i hope we can be easier on ourselves and find some peace with knowing we are doing the best we can. And even if we aren’t, that’s ok too.

& maybe in time we can take what we can from these losses – like our values or our creativity or our interests/passions – & use them in a gentler way that works for our bodies or adds to our joy. ((It feels a lil daunting to say this but I think it means changing the lens a bit & shifting perspectives )) 💜

☁️

(& if we can’t that’s okay too)

February 19, 2021

You don’t always need to be improving or healing. There is grace in just being. 

February 20, 2021

Feelin 29 ((.. & 80 some days 👵🏼)) but looking about… 24? 💁🏻‍♀️ give or take ?

Ready for somegingerbread cake & planning to dive into some watercolors today! 😇🤓

February 22, 2021

I think when we allow ourselves to feel excited about anything, no matter how big or

small, it triggers a domino effect within us – leading us to take note of the other small sparks of goodness that we might have been oblivious to before. Maybe we will notice when we have a truly meaningful conversation with a friend or feel more engaged and filled up than we have in a while – or we might notice when our mom or dad or significant other bakes us something special that doesn’t make us feel sick… (& that actually tastes quite delicious). These special moments may water the seeds of strength and hope and happiness within us – they may show us that our hearts and souls are healing, little by little – and they might remind us that we are still surrounded by little comforting pieces of joy. <3

☁️☁️

a few little things that have warmed my soul:

– baking a gingerbread cake with my dad (who is very much not a baker!)

– my friends & my sister surprising me with beautiful flowers (and all of the happy birthdays and love !)

– my little Leo the lion, loving to sit in my lap all day while I work

– my plant collection! and learning more about plants

– listening to old music I love (sam smith) & discovering new music that brings me light! (the weeknd’s newer stuff!)

– a long phone call i had with a good friend on my birthday eve! – realizing that lying in bed at night – i can be much more in my element when talking ha!

– watching carpool karaoke videos on youtube with my dad!

☁️☁️☁️

February 25, 2021

very very bad flare up these past few days w. lotsa dizziness & palpitations & nausea – however i’m very thankful for bright & beautiful things – like these special, joyful tulips. not only are they beautiful (& are from someone i love dearly), but they also taught me a very important lesson! (((one i wasnt expecting!)

—

as someone who constantly needs ‘remember’ to drink more water ((i know put cucumbers in my water just so I like it better – struggle ) – these beautiful pink flowers reminded me – in a very bold way – how life giving & healing water is!

–

with my general fogginess & struggles with distractions, i was so excited about how beautiful the flowers were when they arrived in the mail that i completely forgot to fill their vase with water. I just set them up in the sunlight on the table & that was that!

–

a few hours later, I walked past them, and much to my dismay, every single tulip had completely fallen over – they looked so sad – and so dead! they were completely just hanging there!

–

then luckily it clicked that they were very thirsty – & I was amazed to see that about an hour after I filled up the vase, they all had come alive – each flower was straight and tall!l in just one hour they had crashed, and in just one hour, they came right back to life!

–

so all is to say, on this v. sick day, i am very thankful for these pink, plump tulips, as they inspired me to really get down with hydrating this very sleepy body!

March 6, 2021

~disappeared for a bit as I’ve been in the middle of a feisty flare up ~~ ☁️☁️☁️

((& this flare up has been a baby flare up in the middle of a v. long term flare up)) ☁️☁️☁️

trying to stay afloat with work & life has been a bit difficult but just focusing on getting by —> surviving but not entirely thriving.

☁️

I did join a creative group this week that I’ve been wanting to join, hosted by my fave podcaster (& writer) & am excited to explore creativity in new and different (& accessible ) ways ☁️☁️☁️

I used to think creativity had to be perfect & that only big creative projects would fit in the creative “box” ((which doesn’t make sense at all)). ☁️☁️☁️

But creativity comes in so many shapes & sizes – and even on low energy days, creating a mood board or a feel good board on Pinterest I creative! Or a Spotify list ! ☁️☁️☁️

I have found that creativity is one of my biggest sources of life energy & fulfillment w. Chronic illness —- bc it lets you create something that didn’t exist! It takes you outta your head ((& simultaneously into your head – in a good, nurturing, soul nourishing way)) && it allows you to explore . Ive realized creativity is a way to adventure when your body needs to rest &or you can’t leave your house // when travel or outdoor explorations are out of the question // .when new experiences are too much with the fatigue. ☁️☁️creativity can be a beautiful source of joy ☁️☁️

what’s your favorite kind of creativity ??

March 14, 2021

Hi! Hoping most of you are having a lower symptom weekend & aren’t too thrown off by daylight savings 😬 sleep has been a bit of a hurdle these days but I just got a new weighted blanket so at least it feels cozier in bed! … def considering a pregnancy pillow 😅 it looks so satisfying to be all wrapped up in a giant pillow. & being single = the perk of having my whole bed to myself and space for all of the pillows in the world 🤷🏼‍♀️💕 does anyone have one of these giant cocoon pillows? Or any recommendations of creating the most sleep-able spot!?

–

I’ve been quietly working on getting my book all ready for publication & now that it’s seeming real I’m getting nervous! It’s been a three year writing journey & while I was soooo relieved to finish the actual writing a few months ago – the idea of putting into the world is quite terrifying 😨 and to know that soon anyone could read it is intimidating! ((.. also the fear that no one will read it is too real 😶))

–

I’m currently working on designing the cover – which I’m trying to make as cozy as possible with soft blankets and cozy socks and a mug of tea! I might need a little advice for color scheme if anyone would kindly be up for giving me some

Input once I have some photos! ((I would SO appreciate it)) just having the chance to hear all of your stories and thoughts and experiences has helped me to feel comfortable with opening up about my own – so thank you so much for accepting me in this community ☺️ …now I just need to work on the not being afraid part!

–

On a much heavier note, one of the most special kind-hearted souls I know is unfortunately still in the hospital – going on 2.5 or almost 3 months?? It hurts my heart that she is suffering so much and still has not found answers. Her bravery and her tenacity & of course her gentle kindness inspire me every single day – and I just hope with all of my heart that this dear friend gets the care she deserves soon – the same care she gives to everyone she meets. Sending love your way my beautiful mermaid friend 💙💙💙

March 25, 2021

Hi 👋🏼 it’s a jumbled-mind sorta day… feeling a little nervous w. trying to figure out some future things, but trying to remain curious & open & gentle w. expectations. and beginning to feel cautiously excited about releasing my book very soon! 😬😬i think i will be shocked when it’s officially out there. 😶it’s been so many years of (v. tired) writing – i just can’t wait for it to be all packaged up (w. a 🎀)

–

i’m hoping to share the very first copy with my grandmom before it’s officially released 🙂 <3 … ((she doesn’t know that it’s about to be published!)) ☺️ she has been one of my biggest writing encouragers.

–

today is feeling like a good day to share some beautiful quotes ☁️ i hope these bring you some light✨, connection, hope, or curiosity….

☁️☁️☁️

“don’t surrender all your joy for an idea you used to have about yourself that isn’t true anymore” @cherylstrayed

☁️☁️☁️

“sometimes we are so busy searching for an answer or for a meaning to our pain, we miss the beauty of our growth blossoming inside of us. still search, but also notice as old petals fall and new ones burst open. you are the flower, becoming stronger as you grow from seed to bloom.” @theselfblossom

☁️☁️☁️

“even though things are feeling uncertain, your heart will find the hope and strength to rise, and rise, and rise again. because your hopeful heart is a brave heart.” @apeaceofwerk

☁️☁️☁️

“Good morning. Your pace today. No one else’s. You can’t be rushed, you can’t be slowed down.” -Lin Manuel Miranda

☁️☁️☁️

“I trust myself. I forgive myself. I love myself. I care for myself.” @blessthemessy

☁️☁️☁️

Sending all of the spoons & peace & energy your way today ♥️

March 29, 2021

Bc illness can bring up so much uncertainty, it can feel comforting to always know “what’s next.” Or to be grounded in what is. To have a concrete path ahead. ☁️☁️& while change is hard, trying to make changes is equally hard – bc our bodies don’t always have the stamina to keep up w. our minds. ☁️☁️ It feels kinda like living in a box – and all of our dreams and goals have to fit inside our illness box – or else we can’t get to them. I can say I want to be a nurse and feel all the motivation in the world, but in reality, as I stand here with purple feet and a pounding heart, nursing just isn’t an option 🤷🏼‍♀️ ☁️☁️ Sometimes I get really down about how illness boxes me in. How all the motivation and inspiration in the world won’t make my body able to follow certain dreams. & it’s esp hard when we are held to the same expectations as we would be if we were healthy – or looked down upon for not just “going for it” —- but I know it’s hard for other people to understand & these sortsa views & comments aren’t meant to be hurtful ☁️☁️ I think the way forward is exploring my box – seeing what I can still do that I might not have noticed if I were healthy. Looking at things from a new perspective. Realizing that life is much more about who we are than what we do. & also learning that we can still find joy and curiosity and excitement even if it’s different than we thought it would be. ☁️☁️ what is one of your goals or dreams or joy filled hope that is still within your box? ⬜️

April 10, 2021

The past few weeks have been a bit of a blurry overwhelming & v. exhausting/ overwhelming flare 🌪 my pots symptoms hit me harder than usual – basically spent only 1% or so of the time vertical. 🧘🏼‍♀️ I don’t know about you, but I have a tendency to stress myself more by thinking about the “shoulds” & not acknowledging that my body is saying NO. I think it’s hard to find a balance, as I had to work – so any energy left in my battery had to be dedicated to work. 😰 but bc of this, I had a lot of texts left on unread, a huuuge (very huge) mountain of clean laundry needing to be put away, and overall just a “too many tabs open” kinda feeling. ☁️ it’s hard when there are external expectations that dont account for our health. ☁️ I think maybe it’s important to make a list of what can be done sometime in the future, and hold off on those non-essentials, so we can give ourselves space to not feel so much stress & pressure on top of already feeling so terrible physically! ☁️☁️ definitely a work in progress, but trying to prioritize peace & “okay-ness” and trying hard to remember that not everything needs to be figured out today. ☁️

🌟but a bright star in the sky over here is that my book is coming out -officially- on Tuesday!!! My baby is being born ☺️☺️☺️ I’m excited &nervous and full of lotsa mixed emotions. It would mean the absolute world to me if any of you would like to read it or share it — I would be very honored ☺️ ((even “promoting” & sharing it makes me a bit anxious!” )) ☁️☁️But mostly I just hope publishing it brings some comfort & coziness into the world for those of us with chronic conditions and those who love someone with a chronic condition ♥️ if it reaches anyone at all who needs it, my heart would be warmed. ☺️

I Hope you have a peaceful & light rest of the weekend 🤍

Sending spoons your way!

April 13, 2021

I wrote a book!

In 2013, during my senior year of college, out of the blue, I became very sick…and then I never fully recovered.

I share some of my own experiences in Gracefully Ill, but so much of it is inspired by my kind & courageous friends who also have chronic conditions, and by the special people who have brought love & joy into my world during all of the ups & downs of being chronically ill.

I truly hope this book brings comfort & coziness to anyone who has a chronic condition, and a deeper understanding of illness for those supporting a chronically ill loved one.

After several years of hard work, I couldn’t be happier that it’s here! It would mean the world to me if you checked it out. You can search Gracefully Ill on amazon, or go to the link in my bio.

Thank you! 💜

April 17, 2021

 this week felt like a ray of light even with the symptoms & the lack of sleep 🤷🏼‍♀️ i shared my book on Tuesday, & feel so so grateful& thankful for those who have been so supportive & those who are taking some of their own valuable time to read it. It means so very much to me. 💟 I really hope it helps people to feel less alone. And to bring to light what is so often hidden 💟My sister was so kind @kayyygee1 & really made the day special, starting with a sweet & thoughtful gift & and sitting w. me when I “launched it” (online 💁🏻‍♀️) and ending with lots of festive balloons, sparkling cider, & a little virtual celebration. ♥️ and though it was a little bit different to release a book virtually / from my sofa, it was probably better for me! & more aligned w. the whole message of the book. It turned out to be a little blessing in disguise that it wasn’t an in person “launch” – I didn’t feel pressure to show up or to use all of my energy (or muster up nonexistent energy), but could still share my book with my loved ones right from my couch … in a comfy onesie (aka a romper🤷🏼‍♀️) w. my sister & my favorite furry poodle beside me (….obsessed with the balloons!) 🤍 though I have been writing online for a long time, this feels a bit more personal – as this was disclosing all that exists behind an “invisible” illness. It feels kinda like my diary is being read – simply because it’s so honest and bc I put so much of my heart into it. I am truly touched by anyone who chooses to read it, and I am thankful for all of the thoughts and fears and struggles and joys I see shared here – as they have helped me to finally feel ready to share this book. ♥️♥️Sending spoons your way 💜💜

April 22, 2021

Happy earth day! 💚💙 I took this photo this morning before even remembering that it was earth day 🦕 something that I haven’t thought much about is how chronic illness has made it more difficult to feel connected with nature 🌱 hiking & walks in the woods aren’t quite as accessible, and what’s it is summer going outside can be dreadful 😰 but of course a beautiful fall day can be truly perfect for just sitting outside 🍁 And snowy days are my favorite days! 💁🏻‍♀️

But today I realized that I have reconnected w. nature in recent years in new way – my plants! I don’t know how I didn’t think of this as our house has become a jungle 🌿🌱🌿 I love researching plants and figuring out what each one needs … my plants truly bring me so much joy! I’ve even sold multiple propagated babies! 🤓 they’ve showed me how some seasons are for growth and some are for dormancy, and that this is ok. And while I panic when a leaf dies, most of the time, it’s just because the plant needs more light or more water – and once it is supported and nourished and loved, a new leaf grow & the plant continues to thrive. 🌿 I think it’s just a reminder that growth can look different every season or even every day, and minor set backs can just be temporary – they don’t always need to trigger so much fear. And sometimes, we grow in ways we don’t expect. 🪴Maybe this was all a little corny, but plants are such a gift and such a special way to connect to this wonderful earth. 🌏🌍🌎

What’s your favorite kinda houseplant ? 🪴🪴🪴

April 26, 2021

The fact that society puts so much emphasis on achievement, moving up the ladder, and staying busy is nothing new. I internalized this pressure for a long time – and to be perfectly honest, this is still something I struggle with. Questions from others can be particularly triggering – even as simple as questions asking about traveling. I always feel a quiet judgment (though it’s probably in my head) when I share that I’ve never been to California or Las Vegas, or when I draw a blank on what my hobbies are. I have to remind myself that just because other people are doing different things, it doesn’t mean their life is better or that my life is comparably insignificant. We are all on our own paths with our own circumstances, and we can each choose how to make our own lives beautiful.

🎨

It’s simple to connect what we have or have not done or how we spend our time with our identity. But we get to create our own identity. We have the canvas and the paint – we have the power to choose our passions and our interests and how we interact with others and with the world. Our identity is much more about what we care about and value and who and how we love than it is about what we do. Illness cannot steal our identity. I might even go as far to say that in time, it may help us connect deeper with our true identity.

–

–

(passage from gracefully ill – link to book in bio 💙💜🤍)

May 2, 2021

i stopped taking one of my POTS/immune type medications a few weeks ago ((to make sure it wasnt playing a role in my circulation flare up / dark purple feet – & to see if it was helping me)), and started back on it again last week, and both unfortunately and fortunately, I do think it helps me. I’m so grateful to have something that helps even if it’s just a speck ((because any sort of relief or energy is.a blessing)) – but it also is always a bit of a bummer when you know that your body really needs extra help & that it can’t do things on its own. but i think i have to remember that i might not need some of these forever, and if i do, it’s also okay! they are here to make life a little easier, and they are almost just a form of self-care. listening to our bodies and seeing what they need to make it through the day. 🌿🌿🌿

hoping you are finding some moments or pockets of joy in your Sunday & sending you all the cool vibes if it’s getting hot out near you too! For me, heat is pretty aggressive & my body goes a little haywire ☀️☀️😰😰 ***curious about how you cope with the heat! Or if the heat is easier for you than the cold??

May 4, 2021

My aunt shared quite a lovely & reflective poem that reminded her of the grief section of gracefully ill. I wanted to share this special poem as I have a feeling it might resonate with some of you as well ✨chronic illness grief is a complicated thing — & I think it’s something that ebbs & flows in waves & returns when we least expect it. And I think the same is true of joy.

———

The poem is called Fire Flowers & it was written by Emily Pauline Johnson

~

~

~

And only where the forest fires have sped,

Scorching relentlessly the cool north lands,

A sweet wild flower lifts its purple head,

And, like some gentle spirit sorrow-fed,

It hides the scars with almost human hands.

~

And only to the heart that knows of grief,

Of desolating fire, of human pain,

There comes some purifying sweet belief,

Some fellow-feeling beautiful, if brief.

And life revives, and blossoms once again

May 5, 2021

Today was full of “don’t lie down colleen” moments -FOCUS. 🙆🏻‍♀️😰 – it was a constant battle between needing to work and so badly wanting to curl up on the couch with Leo and sleep & sleep & sleep (or more realistically just rest 💁🏻‍♀️ naps are hard when your heart is flying!) 🙆🏻‍♀️the exhaustion is always here but the past few weeks have been exhaustion x 10. I made it through work the past 3 days and knowing that I have to repeat it again tomorrow snd the next day is daunting. It’s hard to balance needing to work and thus using a lot of energy (that I don’t have) & also taking care of my body 😶 does anyone feel this way about balance ? It absolutely doesn’t need to relate to work either — I think there are so many times when we are outta spoons and yet there’s something we have to do – so we have to basically create a few more magical spoons out of thin air 🥄🥄🥄 I hope that we can each find ways to take care of ourselves -even when we have to do really hard things , and I hope we can give ourselves grace both in times when we are truly out of spoons and need to listen to our bodies and in times when we have to somehow keep going (be it a doctors appointment , taking care of a pet, spending quality time with someone even when are exhausted etc). And I don’t think it’s ever wrong to listen to our bodies. I guess it’s just tricky.

Sending all of the invisible magic spoons your way ♥️💙💜

(Ps – apparently now that I’m cozy in my bed my brain has decided it’s time to wake up 🤦🏼‍♀️)

Sleep tight 😴

May 10, 2021

Tbh, it realizing that podcasts have changed my life more than almost anything. Whenever I’m not working (when I’m eating, getting dressed, biking, painting, driving ), a podcast is always on without fail ((my sister can verify this 😅)) I keep up w. a ton of podcasts that are all over the board. I think it feels like company but doesn’t require the energy of responding!!! Imma list my faves / subscriptions & would love to know if you’re a podcast enthusiast & if you are, what are your favorite shows? ✨

(Warning – my list is aggressive 🦕😰)

&ps – there are definitely days when fogginess makes listening difficult, and those days I turn to Spotify ❣️

-girls gotta eat (@girlsgottaeatpodcast )

-diet starts tomorrow (@dietstartstomorrow @betches )

-UUP (@uuppod @betches )

-self-helpless (@selfhelplesspodcast )

-let it out (@letitouttt )

-gal pals (@galpalspodcast )

-betches sup (@betches_sup )

-consider this (vox)

-that’s so retrograde (@soretrograde )

-what we said podcast (@whatwesaidpodcast )

-almost thirty (@almost30podcast )

-the skinny confidential

-up first (news)

-chasing joy ((though this one ended)) (@georgiemorley )

–@betches podcast

You’re up!!! 💟 fave podcast(s) / when do you listen ?

💟OR current fave song or artist !

💟 Or if listening isn’t right for ya, I’d love to hear what one of your “favorite things” is !?

May 11, 2021

Perhaps healing means looking forward to the future with grace and curiosity, rather than aspiring to be who we were before we became sick.

May 20, 2021

You don’t need to figure out everything today.” ☁️this beautiful chain of words resonates with me so deeply – yet, it’s one of those tricky important lessons that i find myself needing to learn, and re-learn (and re-learn again). I think this is particularly hard because oftentimes with the uncertainties of chronic illness, we can’t actually figure out everything today or tonight or within the next hour. A lot of the time, we have to make peace with just seeing what happens next. There’s also that little voice that whispers in our ear that we have to figure “x” out before we can go on. Before the next thing. But I think life is about moving to the next stepping stone (with just one baby leap or hop or tiny step) even when we know we are leaving behind some loose ends. I guess it’s all about giving ourselves permission to allow things to be unresolved, and to trust that if we need to figure something out, we will. And that maybe the figuring out can be left to our future self. Perhaps we can put our trust in who we will be, a few steps down the road.

June 1, 2021

biking on my recumbent bike has gotten harder && harder these days – whether it’s too much nausea from biking,  too much leg pain, a super high pulse, or an inability to catch my breath (keep in mind – , this is me biking with v. little resistance!)), it’s just become a daunting, frustrating, & exhausting  part of my day.

-with biking becoming harder, i’m reminded of when i first became sick, and could not ride at all.

Biking has never been easy w. illness, but i’ve always tried to prioritize it – as I thought it was a key ingredient in healing ((and bc in my “previous” life, I was a hard core runner)). ☁️

I do know that this need to ride the bike does relate to  my previous unhealthy relationship with exercise – a relationship that was kind of put on hold / erased/ ignored because of my pots, which took running away from me  all together. I used to “have” to exercise, or else i would feel very anxious, and would eat less. As if i had to exercise to eat . It was a tangled up part of my eating disorder ☁️

But over the past 5 days, i didnt ride the bike once, as i was at my grandma’s house (w. No bike). I barely moved, as I wasn’t really able to go for walks and was very sick.

But then I realized – something good came out of this. For the first time in a long time, i didnt panic about the fact that i wasnt moving my body. That i stayed rooted in my little nest on the couch. I didnt eat less, or deprive myself. I didnt worry so much about what this would do to my body. ((side note: it’s not like my biking is a hard core workout or anything at all,. It just helps with my circulation, but somehow in my brain, it still “means” i moved))

☁️But i realized this weekend that even when i cant move, i can still respect &care for my body. If my body is fighting so, so hard for me, don’t i want to fight back for my body? I think if i can remember this, it can feel much easier to nourish my body & appreciate it, and care for it, no matter whether or not I am moving or not moving.

Maybe sometimes moving is healing, but when our bodies say no, then maybe a break is more healing than movement is in this moment / for now (or for however long).

And just because moving is less accessible now, it doesn’t mean it will stay this way or that this is permanent. I have to remind myself that isn’t the same as when I lost running. A flare up does not mean we have not made progress, or that we are losing our progress. <3

June 3, 2021

“A meaningful life is not defined by productivity”

Little by little, I’m starting to see that productivity doesn’t make my life any more or less valuable.  What makes this life meaningful is the joy and compassion I find in special moments and meaningful connections. It’s about the relationships with people who make me feel good, and who allow me to be myself around them. It’s about the hobbies that I love to do, and not at all about reaching “perfection” in these hobbies. It’s about creating expectations that are centered around fulfillment instead of solely based on big accomplishments or the need to be better. I guess I’m softening my own beliefs to the understanding that a meaningful life is a life centered around finding peace and fulfillment, and not productivity. My goal is now to seek happiness (or “OK-ness,” if this is more attainable). ☁️

In small steps, I am realizing that it is perfectly OK to soften my expectations and to work on making choices that make me feel good and whole — choices that allow me to care for and love both myself and others. Ultimately, a life focused on finding peace and gently taking care of ourselves can be even more beautiful and meaningful than a life focused on external achievements.☁️

June 4, 2021

Hi! This might be a little all over the place bc my brain is a bit mush like today ! ☁️☁️☁️

In about a month & a half I’ll be moving back to Maryland & it’ll be my first time living solely on my own with no roommate/sister . I’m very. excited , but also have a few little things on my mind – such as the daunting task of packing … & the v. large amount of energy that I will have to muster up to pack 😰 I’m trying to do a little bit every day now ((even though it’s super early)) – as I don’t have the stamina to do much more & I can feel a disaster coming my way I push it off. But man! Just gathering things for goodwill knocked me out last night. My health has been very rough these days – making most things difficult – so I’m to accept this and also make the most of any (rare) energy spurts. ((And trying to create energy – which as you know , isn’t really a liable option 🙆🏻‍♀️))

I am excited to make this home my own space and am putting a lot of love & thought into decorating it (and making it special)

—spending so much time at home , I want to be intentional about planning a cozy home and buying some new things that feel peaceful to me ✨

For me this is light colors and keeping it simple ! I definitely feel like light /soft colors make me feel less “stuck” inside and just a bit more comfortable when my health has me spending so much time at home. & candles & my diffuser & a plant jungle are also gems🤍

🌥I still need a couch &&& I’d say this is the most important piece of furniture because it’s my second home ! 🙃 so I want a nice cushiony soft space ! (I literally work from the couch with a laptop stand thing !) – ☁️☁️☁️

but I would love to hear – how about you? Is there anything in your home /space that brings you feelings of joy or lightness or helps you relax? Or anything that make you feel cozier in your space ? Plants? Colors? Decorations? Soft blankets? Things that support your health or your mood?

🌥🌥🌥

June 7 , 2021

“Though we may adjust to being sick, in the sense that it becomes our norm, it doesn’t mean that it magically becomes any easier… it doesn’t mean that it isn’t hard. So please, be gentle…you are doing hard things.”

☁️☁️☁️ I think that those of us with chronic illnesses are a little more used to loss. We are familiar and accustomed to not getting to do what we had hoped to do. We’ve gotten used to missing out on plans and road trips, or even school and work. But the fact that we are used to sitting out on plans doesn’t make missing out any easier. We don’t necessarily enjoy being at home the majority of the time. Yet we have learned (and are constantly learning) how to cope. We have learned to do our best despite the circumstances, and we have found a new way to be. ☁️☁️☁️

June 12, 2021

I know that in the upcoming days & months, there are going to be many things that I have to sit out. It’s not a matter of choosing my health or prioritizing my health ((though of course this is never bad logic!)), it’s a matter of my health simply not allowing me to do certain things. My health declined a lot in the past year, but more so in the past 6 months. But in those 6 months there was little pressure to show up & be a part of the world outside of my home and little bubble. ☁️☁️

I hope my friends can understand when I can’t be there, and that they can understand how much it also pains me to be there – that it’s not really a choice, but a necessity. It isn’t fun or fulfilling to always have to say “I’m so sorry – I can’t make it” – yet so many of us have to say this time and time (and time) again.

It’s hard when your whole life occurs in your house – it’s difficult to find curiosity, and moments of joy, and bursts of serotonin when it’s just you 24/7. & I think this is why it’s so incredibly important to be gentle with yourself – to allow yourself to feel any feeling that comes your way. But also to remember that if something brings you happiness, allow it to! ☁️☁️If we judge ourselves or our circumstances, it makes it so much more difficult. And if we can find comfort in being at home or alone, that’s absolutely wonderful. Cherish anything that brings comfort, joy, peace, excitement, or any sort of feeling of coziness. ☁️☁️

So if you have to cancel or if you can’t attend something that you would love to attend, I hope you know that I understand & so many others understand. ☁️☁️And if you are someone who misses out on having your chronically ill friend understand, I am sorry for you as well – it’s hard when someone you love misses out – especially if you were counting on them being there.

We are all doing the best we can. And that’s all we can do. ☁️

June 17, 2021

Very grateful for my friends’ support all of the time & especially when things are tough. though i know our lives might be different in many ways, i can’t help but feel grateful for how they keep showing up for me. i imagine that constantly being there for a sick friend isn’t always easy. being here alone isnt easy either, so it’s so so  nice to know that you are surrounded by love, even if it sometimes has to be from a distance. ☁️(which is how it has been right now w. a 6 month flare up and too much heat) 

one of my best friends (from middle school) texted me this morning –  “I’m sorry you’ve been having such a tough time. Is there anything I can do?” The thing is, she checks in on me pretty much every day. And it really really helps.  it’s just cozy and comforting to know that someone is out there remembering that im here, even when my life is a little slower / homebound, and even when i cant show up in person for her as much as i wish i could. ☁️

my other friend (also a life long middle school best friend) knows how much I love to take trips & explore &  knows that trips arent always/often accessible – and after telling me about her trip to Maine, she sent me this thoughtful text —   “Maine would probably actually be a really good trip for you if you weren’t feeling as well, I mean not if you were feeling really bad of course then all travel would be a struggle but you know if you were just kind of more middleground because you can kind of stay in the hotel and do like you know the pool or hot tub or just even sit inside in the cozy areas like watching the cliffs and the ocean and like writing or reading. just super relaxing”

Just knowing that she was trying to think of a way for me to experience something similar to an experience that she loved was really meaningful to me. ☁️and it’s these texts and gestures that make the chronically ill life a little less heavy to carry. i think it just helps to know that others care – even after the sickness lasts for years and years.

June 22, 2021

fetch w. My little Leo, horizontal style ☁️☁️ (thankful he’s a small guy so that I can get some of his energy out even from the couch!) ☁️

Past few days (& months 🙆🏻‍♀️) have been especially tough, with fevers that slowly set in by late morning, headaches, & severe severe fatigue. today was probably one of the hardest days physically in quite a long time ☁️☁️ It’s a little overwhelming because it’s a stark contrast to the many people who are emerging from hibernation into this post pandemic summer – coming back out & socializing and celebrating their health and joy and energy ☁️☁️ I feel like a bear in a cave 🐻 just staying here in hibernation 🐻… but this being said – when things do get so bad, it can be really difficult to be a present friend and to be able to be there for & show up for loved ones. ☁️I wish so badly I had the stamina to show up more and respond more frequently – to shower my friends with love and care ☁️ – but some days just making oatmeal & taking a shower and surviving is the best I can do. And because of this I’m so grateful for the special people i love so dearly – both healthy & chronically ill – who seem to know that I love them and I’m thinking of them even when I can’t be present (physically or emotionally) due to health. I trust that they trust our relationship (at least this is what j hope). ☁️ It’s lonely feeling so sick – but knowing that I am surrounded (and YOU are surrounded) by love can make all of the difference☁️

A little cheesy but I’ll just say it because it’s very true — you are so loved & there is still so much more love out there waiting for ya ☁️🤍

June 28, 2021

“Gentle reminder: you are not behind in life – you are on your own unique path and timeline.”
so live your truth! 💙☁️

Just a daily reminder that no-one is ahead or behind in life —> we are all just on our own unique (& equally special) timelines. The notion that some people are ahead while others are falling behind is a myth — we each get to choose what we put our energy, thoughts, passion, brain space, time, and effort into. We choose what values we cherish snd we dedicate our hearts to. When we compare, we miss our on the beauty of own paths. And though illness can cause detour after detour, we still each have our own values, passions, people, hopes, and loved that we hold near & dear to our hearts — we still are choosing how we move forward in life. ☁️☁️☁️

So for anyone needs it, I hope in time you can see that your path is different, not less than, and that you can nix the notion that you are falling behind. I hope you can realize with grace && extra gentleness that you have the power to paint your own path – and you have the special abilities to choose which values guide you forward ☁️🤍 ((and I hope you can see that values don’t have to be “accomplishments” or raises or external wins – they can be softness, compassion, humor, empathy, or any value that makes you who you are))

–

sending lots of love from my corner of the world to your corner 💜

June 29, 2021

“Sometimes grief is quiet & comes up at unexpected times. Other times grief is loud and powerful, and drowns put the rest of our world. What makes grief so overwhelming is that by nature, it doesn’t have a solution or a final answer. ☁️ perhaps healing might mean being able to sit with the loss. Being able to face it head on. Being able to feel it. ☁️ perhaps healing might mean no longer feeling so trapped within four walls of darkness. ☁️ grieving our health may not have a end point. It may be something that sometimes washes over us in giant dark waves, and maybe sometimes it will just lap gently at our toes. ☁️ but I hope we can all remember to be gentle with ourselves when grieving – and that we can be gentle with ourselves when we cry over a wound that we thought had already healed. We grieve our losses more than once – and when we do, we can take all of the time we need until we feel a little bit lighter again . “ ☁️☁️☁️

A little excerpt from my book “gracefully ill” 🤍

July 4, 2021

Thank you for loving us & for bringing so much joy into our lives ♥️

I am going to miss you so incredibly much. Love you more than words, Grandmom 🤍

“I carry your heart with me. I carry it in my heart.” ♥️

July 12, 2021

We can acknowledge the pain of others while also avoiding minimizing our own pain or suffering. We each have our own experiences and our own perceptions. And while some mountains may look bigger, we can still simultaneously acknowledge that we too are climbing. 

Some words from my book 🤍💙

 a reminder that all of our experiences are valid & hold value and if something hurts you are allowed to feel pain or sadness – and if something beautiful happens, there’s also infinite space for joy. And the same holds truth for every single being- feelings are feelings and you are allowed to feel them – without comparison or judgment

💙

July 13, 2021

It always feels a lil funny and a tad bit uncomfortable to just post selfies on here — doing nothing but smiling – But when ya spend 99.9% of time on the couch, you run out of photo subjects 💁🏻‍♀️ so excuse my smiling face and I’ll keep racking my brain on something more interesting 😳

Haven’t been super present on here as my health has really been at a low. My friend reminded me that nothing lasts forever, and this phase will also pass – but it’s difficult when you don’t know when things might lighten up. I’ve started vitamin b injections for vitamin b anemia bc I can’t absorb vitamin b so 🤞🏼 that it changes some things so I can maybe get out of the house just a little bit 🏠

The fevers and nausea and headaches have been a little extra spicy, so it’s been a little tolling to get through the days. Very thankful for the friends who lift my spirits and bring a smile to my face . And I have to say, tik tok is such a nice little distraction when things are extra tough !! ((If you have a tik tok I’d love to follow! 🤓)

I know I posted about my Grandmom, but her death has been extremely hard on us as well – as she has played a huge & special role in my life for my entire life, & even more so since my mom died ten years ago. She’s been my go-to loving wonderful person, & the world is not going to be the same without her in it. ☁️ it’s like that Winnie the Pooh quote though – “how lucky I am to have something that makes saying goodbye so hard” 💗

Oh that note – I have some exciting news in that pretty soon I’ll be bringing home a new fur baby, and come Friday I’ll be moving back to Maryland !

Sending lotsa gentleness & support & grace to anyone else who is going through a rough few days weeks months or years 💗 I certainly hope that we each can experience some moments of light and relaxation that bring us a breath of fresh air amongst hard times.

☁

July 23, 2021

We (🐶👩🏼‍🦰) are all moved in & cozy!

July 27, 2021

“where you are is the only place you need to be”

☁️☁️☁️

I think I get overwhelmed thinking about tomorrow & the day after & the day after – or what happens if I feel this bad forever.

but there’s no way to know what tomorrow will bring, or next month, or next year… so I think im going to try to just focus on the now.

☁️

&&& in the words of Hagrid: “what’s coming will come and we’ll meet it when it does”

☁️

August 2, 2021

It’s our health that holds us back, not our hearts. 

Yesterday one of my best friends got married💗💍 i am beyond happy for her – she has nurtured a beautiful & sweet relationship, and on top of that, is about to be mama 💓♥️

~

i was able to watch the beautiful ceremony on zoom – which i am extremely grateful for, as i could see this ray of light get married. And it was a lovely ceremony.

~

yet, it still felt so entirely sad & lonely to have missed it in person.  I wanted to be there more than anything.

~

It’s so hard to want  (SO badly) to show up for our friends, – especially on these huge days – the days we want to celebrate & love them & be there to cheer them on

~

And when we can’t be there physically, it can feel so disappointing & hard & distant – and it can “feel” like we aren’t a supportive friend ((even though we would be there in a heartbeat if we could)). We want so badly to support our friends. It’s our bodies & our health that prevent us from showing up – not the love or care we have for our friends. And it’s sad that we don’t always get a way in the matter.

—

This is all to say that sometimes it really really hurts to miss things. Both because we want to be there, & because we want to love and lift our friends up. We want to feel like our friends can count on us to show up for them – bc we wish we could. & while it’s hard and it’s heavy, i think we have to keep reminding ourselves that not showing up is not a reflection of us – it’s a reflection of our circumstances. Our bodies sometimes act in opposition to our hearts & our intentions.

–

Im so thankful that my friend understands & knows I would have given anything to be at her wedding. But despite this, it still hurts my heart that i couldnt see her on her special day in person. & I hope she also knows I was there clapping and crying and laughing (when she laughed during the ceremony!) from my couch. And that I was cheering for her big time.

–

I try to remind myself that there are other ways that we can show up or be there or  show how much we care. &!though these may not always feel as fulfilling or supportive in the moment, sometimes we have to do what we can and know that our whole hearts are invested – and this is what counts.

August 6, 2021

It has meant so very much to me to see all of the beautiful photos of my book and to know that others have taken the time / are taking the time to read it. ❤️Thank you so so much. My greatest hope was to spread awareness and understanding of chronic illness – as well as hope. 💓Not as an expert , but as a friend – as someone who has soaked up the wisdom of friends and loved ones with chronic illness, and who has lived a “sick” life for 8 years.

☁️

Gracefully I’ll is meant to be a comforting companion & a warm hug. With thoughts, inspiration, stories, and little bits of joy (among darkness) that surround us in this world – and that we can find, even at our sickest.

🥺☁️

Being so sick, I haven’t been able to dedicate as much time as I’d like to sharing Gracefully Ill – after putting hours & even years of work into it.

☁️

And so I have a favor to ask – if you have a moment, I would be so grateful & touched if you took a second to review it on amazon (or on goodreads) – so that more people can find it (and hopefully thus find a lil comfort in the pages).

☁️

To express my gratitude, as a little thank you – if you are interested – I would be happy to send you a second free copy of Gracefully Ill in the hopes that you might share it with a friend who is struggling, or with someone who might resonate or be in need of comforting, or for someone who might be supporting someone with illness (of any capacity).

☁️

Thank you so much again <3 Sending energy & joy & hope (lots & lots of hope) your way. ☁️☁️☁️\

August 21, 2021

hi 🤍 haven’t posted in a bit as my health has gone down hill // both slowly & quickly over the past weeks & months. I feel like I have the flu most of the time, and am always burning up and have constant headaches and nausea .

–

It’s tricky because we don’t really know what’s going on. Tests and appts and research & we’ve only gotten so far .

–

I think that in the past, I would have constantly been trying to find the “answer” or the “solution” – as if health were a puzzle that could always be solved so long as we looked hard enough for that little missing piece. & while I still believe that a lot of times , we do find some of the pieces and we are able to connect some of the tops , I also think that life is harder when all we focus on is how hard and terrible

Things are in the now.

While I of course more than anything do hope for an answer & hope that my body calms down a bit soon // gives me even a few days of relief, I’ve realized that i am able to make it through the days – to find small joys and windows of light – if I accept where I am , and don’t put all of my mental energy into “what’s next” or what’s the “cure” .

Of course (!!) this is not to imply that I don’t fight for my health or want to get better

– I absolutely do. I research & I see new doctors & I try news meds & supplements – & lifestyle adjustments – but I don’t let it consume me. Because even when my body feels this awful and sick, I have to keep in mind that some things simply take time , and that it’s so much harder to feel upset and frustrated and anxious and miserable over not knowing then it is to realize – that this is where I am today, and yet, simultaneously, it won’t always be this way.

– I think it’s a balance of trying to find comfort in the moment ((despite feeling incredibly uncomfortable)) & also putting energy into hope. When I feel more hopeful, the doctors and the tests and the letdowns aren’t quite so painful.

– A balance of pursuing relief & also pursuing peace & comfort and some sort of calmness in the moment – even when our bodies are stormy. ⛈

– Sending lotsa love & coziness to everyone who is sailing in this same boat ⛅️

August 27, 2021

“grow your own way” – 🌿🌿🌿

stillness doesn’t mean we are not growing. sameness doesn’t mean we are not growing. maybe what’s most important is that we are growing into ourselves, no matter what our circumstances may be. maybe it matters if we can create a home within ourselves, and a home within our home. 

🌿

i have been pretty much home-bound for months now because of this current season of health. i dont have much stamina for doing much, i risk fainting if I go out, and the heat is really hard on my body. covid only makes this trickier – even if i have a “good” (better) day, I know that i still must be very cautious until the covid rate declines.

🌿

being at home all of the time has it’s ups & downs, like everything, and ive realized the key is just to be gentle. if a day doesnt go as planned, this is okay. life is hard enough – i dont need to beat myself up when i cant “get as much done” or even when i cant find any creative energy. 

🌿

the little bright spot is that i have gotten to know myself, and i have gotten to trust myself and my body — & this is why this little sweet quote resonates so much “grow your own way.” — life is very hard and very different than i would have expected, but ive learned how to keep myself company, and ive learned that there are so many beautiful ways to grow. 

🌿⛅️

No matter where you are or what your circumstances are, I hope you remember you are growing into who you are becoming ❤️🌿

August 30, 2021

little does he know, he’s getting another furry sibling in just 2 weeks(( 🐶🐰+ one more little being!)) hoping that a fluffy friend will help bring his anxiety down a tad 💓

Pets can be a lot of work but aside from just loving animals, caring for pets keeps me both happy & moving each day && of course they are wonderful company 💓

Sending extra spoons & gentleness & comfort today 🥄🤍

((In this pic Leo was waiting for his “grandpa” to arrive))

September 23, 2021

the past few months & truly the past few weeks have been a little extra tolling – both emotionally & physically. just meeting some of the “demands” ((or trying to meet them!)) alone can be exhausting – and I think that I just grew a bit burnt out from all of the pushing forward – with no definitive end in sight ((when the exhaustion would ease or when I would feel back more in the “flow” of things)). Something I was really looking forward to – sort of my little guiding light – didn’t work out (very unexpectedly) — & this really got me. I know we are probably all very used to not being able to always count on a lot of things in life — like vacations, plans, how we will feel from day to day, even when we will be up for a FaceTime or phone call. adjusting to not being able to feel like things are absolute is very hard alone. we don’t often get to be excited about things in the same way as maybe we could be if we weren’t sick ((( I know this doesn’t resonate with everyone, but I think maybe more than just me??))  and with that – when we already have lost so much, and lose so much regularly (every single day),  the things that do actually seem possible and attainable and heartwarming and fulfilling (and worth getting fully excited about)  – can grow in importance. they are the radiant sun right over the mountaintop. they tell us to just keep putting one foot forward. they give us hope. and we are lucky when we find these things or stumble across them. <3  I lost something that was really really special and comforting to me and something that was extremely precious – and it felt very unfair. I felt sad and also angry with my body for deciding I couldn’t have this either.

I don’t think I have something encouraging to say about this – because I think sometimes we just have to feel it. and sometimes it’s really draining and really overwhelming. I guess I just hope that we can all find a few more of these good things – no matter how big or small – and know that somewhere along the way, one of them will work out and not let us down so hard.

I hope this isn’t too sad of a post – I certainly don’t mean for it to be this way. more so, I know that we all face daily losses due to our health – and sometimes they are so much heavier than they may seem at face value. So…with that, I’m sending anyone who has faced this feeling the warmest hug and a whole lot of extra love. and that I hope if you are going through this, you find a little something – a tidbit of hope – worth holding onto. 🌿🌿🌿

September 30, 2021

Stumbled across these photos from a few years ago – fall in old town & fall in Pennsylvania – & they caught my eye with all of the beautiful fall colors & fall-ness. 🍂 fall is my very favorite time of year, && this year it seems extra precious and sweet after having to spend this long summer indoors. i am hopeful that maybe i can go apple & pumpkin picking this year — fingers are crossed that my body will energize itself a bit just to get in some of those good fall feels and moments 🍂🌿🍁 ((& it not, I would be thrilled to just sit on my patio and watch the leaves change!))

🍁

looking through some of these old fall photos brought me a bit of peace and comfort & even a teensy sense of excitement of what is to come 🌿🍂it’s been a little extra difficult these days & months (wellllll…maybe a lot)  but i still feel a sense of hope for what’s now and what’s next 🌿🍂

it’s a little bit ridiculous, but i had to go to urgent care twice this weekend for severe severe pain in my shoulder/neck/collar bone etc. 😰😰 only to find that I somehow injured myself pretty intensely while ..sleeping…. and yet, this doesnt even surprise me anymore haha. it was actually quite awful in terms of pain, but i can still laugh that my body wont even chill out when I’m asleep – this just seems extra. i am very very thankful for muscle relaxants, tylenol, and steroids, as the inflammation is slowly going down and I can type and text and move my head (ish) again.  🍁

This morning I had a really good (& maybe encouraging? 🍂) doctors appointment – it wasnt that anything new was said or that it was esp. positive, but i felt relieved that i knew someone has my back and has a plan in mind, and is supporting me in going in the “right’ direction towards maybe some form of relief. i it’s hard to separate health & life sometimes, as they aren’t always separable, but when you feel like you have some plans as to what to do next & feeel like you have a mental chart drawn out, it’s easier to find a little bit of peace & grounding in the present. 🍁

sending cozy fall vibes … take good care of yourselves 🍁🍂

October 5, 2021

It’s funny how much the words “health” & “healthy” have transformed for me over all these years of being sick. Before I “became” sick, I was overly preoccupied with health – & not always in a good or “healthy” way. In reality, my love of “health” took me down a long bumpy road in which I questioned my body and constantly questioned the foods I ate and how much I moved. Some of it did come

From a really good place – I don’t want to be super hard on myself – I was trying to care for my body ((& I truly did love

Running with all of my heart)). But my body changed a lot in a way that didn’t really represent “good” health, and I had a lot of rules around what foods were “good land which were off limits. Taking care of

My health (which is a term that is a little vague 💁🏻‍♀️) has really transformed in the last 7-8 years – and in a lot of ways, though my body is struggling ((an understatement 😅)), my views of my body and of how to take care of it might actually represent a healthier mindset – because I now listen to my body. I now don’t put so many rules onto how to care for it or nourish it. It’s 9 am and I’m eating a few graham crackers because I’m feeling a bit “woozy” & know that the sweet & a lil bit sugary taste / feel will be nourishing to me. I also feel much more

Alignment on how I take care of myself – I eat all plant based, and this feels better for my body and for my soul! 🌿💗

–

I think all of this is to say that “healthy” can evolve over time – and it can look different for everyone. Is my body healthy ? Not necessarily – it’s pretty ill & trying to fight another hive outbreak 😳- but am I caring for it and nourishing and nurturing it? I’m doing the best I can today and I’ll do the best I can tomorrow 🌥

–

sending lotsa 🥄🥄🥄 and a reminder that “healthy” can change with the years, seasons 🍁, days, or hours & only you know what’s best for you ((including gentleness ☁️))

October 8, 2021

“i’m so glad I live in a world where there are Octobers” 🍁🌿

🍂🌿 hoping the transition into the cooler weather & the leaves changing & the pumpkins sprouting brings a fresh feeling of hope 🍁

&& If the seasons changing is extra tolling or hard on your body, I really hope you can be easy on yourself & gentle with yourself 🍂🍁 our bodies can be super sensitive – so it’s okay to be soft with ourselves.

I’m sending you lotsa extra 🥄 & 🍁

October 14, 2021

my little fall munchkins 🍁🍂🎃 ((& some cozy quotes))

It’s been a very tired week over here 😴😴😴 one of those weeks where no matter how much sleep I get or don’t get, I just can’t seem to feel awake. I am very familiar with the “fatigued life” ((that’s everyday 🥲) but it’s a little different for me when my eyes keep wanting to shut. 💁🏻‍♀️

anyone else have these days or weeks? What do you do during these tired flares?

Sending pumpkins & spoons! 🎃🥄

October 28, 2021

I stumbled upon a little quote today by @aolanow – “don’t forget to fly.” These sorts of quotes used to intimidate me because I wasn’t really sure “how” I could fly if I was “stuck” in sickness. But little by little I’ve realized that flying looks different for each of us —— flight looks different for each of us. I hope we can all find those moments that inspire us or encourage us or allow us to gain new perspective.

My dear friend just made her way (all the way!) across the country- where she is starting a new job and writing a new chapter —- and im SO excited to (continue to) see her fly. She has always inspired me with her courage, & individuality – and I’m just so grateful that our winding paths crossed a few years ago ☺️🥰

Loving the fresh fall air & am thankful that my little fluff ball keeps me walking 🤍🐶

I hope that you each find something that brings you joy or peace or fulfillment t- or that sparks your curiosity in these fresh fall days 🍂🍁🌿

October 31, 2021

happy Halloween from some spooky bat babies !!!!! 🦇🎃

((Uncertain if Oatly fell asleep in his bat wings))

During our last visit with my Grandmom we took a walk around the neighborhood just as it was beginning to get dark – and two bats were swooping down WAY too low. She thought it was funny how scared kelly & I were getting ((and how we kept covering our heads and shrieking)) – she wasn’t too phased by our low flying friends. I think she would appreciate seeing her little great grand fur babies in their bat wings this year ♥️

Have a lil candy corn waiting for me ((favorite favorite favorite candy — know this is very controversial 😳😅))— hope you can enjoy a lil sweet candy or something halloweeny this year!!!

November 12, 2021

when things are extra tough , I hope you can remember that you’ve always found a way forward before 🤍💓🤍 you’re a finder of ways!

November 20, 2021

A little weekend getaway & it feels so good to be out & about ((ish)) and exploring the world 🌊 this is pretty much my first real outing/ adventure I’ve had since before the pandemic … so feeling a little bit of relief & a bit of rejuvenation at just being near the water and on a vacation. Maybe it’s a mini vacation but after months at home, it feels like a breath of fresh air to go on this little adventure . 🌊🌊🌊

Sending extra fresh air & spoons to anyone else who has been home for a very long time – & a reminder that your life at home is special and valuable and important – despite how hard it may feel 🤍

December 2, 2021

Hiiiii! So I was actually working on a video for work, and then realized that all of the white on white wasn’t quite the right vibe. But leo jumped in so then we had a photo shoot 😛. I also have tried to film my video again for work, and noticed (after the fact) that my face was all red and blotchy. It’s funny that I didn’t even notice this on the camera…goes to show that blotchy is kinda the norm? Anyone relate ???

I’m working on a project that I’ll be sharing very soon 😊 can’t wait! It’s been fun to do something creative that’s a little outside of my normal stuff!! I’ll be sharing it soon ❤️

I hope you are all having a cozy beginning of December. I’m a sucker for the Spotify year wrap ups – and would love to hear your artist of the year or your song of the year or really any of your “stats” ❤️ hehe. Sending spoons & swiftie vibes!

& HAPPY BIRTHDAY @tmd_1292 🥳🤍🥳 thankful for you every single day 🎈❤️

December 4, 2021

This holiday season I hope you can be gentle with yourself and practice soft self compassion on the days when you wake up with fewer spoons. Or on the days when wrapping gifts takes many more spoons than expected. Or on the days when wrapping gifts or writing cards or feeling festive & light are simply inaccessible. Your “spoons” do not define your worthiness, your heart, or the beautiful person you are. So while im hoping you find spoons on spoons on spoons – simply because I know that this makes life a lot easier, more importantly, im hoping that you find gentleness and softness and peace when your spoons are low and when the holidays are hard. ❄️🥄

December 6, 2021

Cozy gifts for friends & loved ones with chronic conditions, or for you as well all deserve some cozy self-care & comfort in our lives ((blog link in bio for all cozy self care product links + a few extra products!))💓❄️

an adorable hot water bottle, a rechargeable hand warmer with three warmth settings, shower steamers if baths are hard or if you want to feel like you are at the spa! A microfiber towel hair wrap -a quick & easy solution to wet hair that uses much less energy! (+ microfiber towels reduce the frizz !)

❄️

a cooling blanket for hot flashes / temperature dysregulation, a dual bath tub / bed tray to hold your iPad and some tea, & a dried eucalyptus bundle to turn your shower into a spa!

❄️

sweet, encouraging, cozy & comforting books for anyone to enjoy ((they can each be read just one or two pages at a time – perfect for when you are seeking a bit of encouragement or a little extra hope))

❄️

an adorable spoonie tee from @fusedwithloveco , the original @koldtec halo (code KOLD10 for $10 off! ❄️)) to cool you off or take the edge off your headache with a comfy & soft ice pack/towel/ etc), gracefully ill : finding peace in the chaos of chronic illness – to remind you that you are not alone, a combination pill holder & water bottle – what’s more convenient than this !? And an aromatherapy necklace so you can breathe in the scent of your choice whenever you may need / want to

❄️

peppermint oil for nausea or for a little bit of energy & clarity, Himalayan salt lamp that doubles as a noise machine! An ice roller for pain, fatigue, glowing skin, & overall energy & circulation. An extra long hot water bottle to keep you warm & cozy or to help relieve pain

❄️❄️❄️

happy holidays!!! 💓

December 17, 2021

Christmas from Leo & oats ! 🎄🎄🎄

Little oats has been extremely ill & it’s been scary and sad and very stressful. It’s really difficult to see a little creature in so much pain. I was doing all that I could to help him, and for a while, we weren’t sure if he would make it. After two vet appointments, we ended up at the pet ER all night the other night (didn’t get home and settled until 6 am!) for the poor little guy…but am SO happy & relieved to see that oatly is finally okay and his little personality is coming out again & he’s back to being himself! a Christmas miracle! ❤️

Oatly sends his fighter energy out to anyone who may need it! 🐰

December 31, 2021

2021 has been a quiet & different kinda year. I’ve been housebound almost all year, with only a few visits out into the world (a handful at most) – both bc of severe health battles, & because of severe risk of the pandemic. for me, new years has never really been about big accomplishments or celebrations, but rather a time to reflect on both the good & the hard, and to just make peace with the ending and with a beginning. I think the biggest thing I learned this year was that life doesn’t have to follow any sort of guidelines or check any sort of boxes to equate to “good.”it doesn’t have to follow any rulebook to be meaningful. it can be beautiful and cozy and full of every single feeling, even if it is hard and scary and difficult. Not every moment was perfect, far from it, but so much specialness came from this year – so many feelings that i want to bring with me and expand on in the next year.  It was a year of learning how to find little magical moments even when all alone. I learned how to show up even if it was just for me. I found joy in expression and creativity, and in music and books and quotes. I struggled on the days when my mind felt staticky and exhausted – on the days when I couldn’t really connect with the world because illness was so heavy. but i learned to keep getting by, and to never give up on hope. i am so immensely grateful for the friends who were here – when i had to stay “virtual.” i feel so proud of all of the big events that they experienced. and so happy to hear the joy in their voices. It was also a year of grief & loss & love –  a year of losing someone who seemed larger than life. A loss that is much bigger than I have been able to fathom.  🤍

i am so grateful for my dad for quaranting this whole year, so we could spend time together. & i am thankful for my son (LEO), as he has been my constant little source of joy – my precious peapod.  Little Oatly is my other little special soul. The end of the year is no more an ending than it is a beginning. 

It’s no more of a beginning than it is ending.. It’s sorta a quiet but loud shift. I hope this subtle leap between years brings you comfort & hope.  & I hope you can feel proud of yourself, for all of the battles youve faced and all of the light youve brought to the world in these past 365 days. And if your year has been difficult — be it a year of loss, a year of pain, or a year of loneliness –  the here’s to you for making it through, – and here’s to you to a truly wonderful *twenty twenty two * ❤️❤️❤️❤️

January 13, 2022

Some little reminders that I hope will bring you some peace ☁️You can have hope for better days, even if today is not a good day ☁️

You are allowed to remain calm, even when facing unknowns and uncertainties☁️Sometimes growth is quiet and subtle & doesn’t look like growth☁️

Sometimes growth is making it through the day & noticing one small good thing☁️

You may be on a different path than expected, but you’re not lost. You’re discovering a new land☁️Survival seasons can be just as meaningful and special as seasons full of change☁️

A flare up of an old symptom does not negate the progress you have made☁️

Healing can mean finding light in life again – it doesn’t have to solely mean healing from illness☁️

Things can be different than you anticipated but still be okay ☁️

Carrying a burden does not make you a burden☁️

The darkness of endings CAN make light for new beginnings☁️☁️☁️☁️☁️

January 21, 2022

“Letting go is hard but holding on to something not meant for you is harder”☁️☁️☁️

One of the very very tricky parts of having a chronic condition is the constant uncertainty. The only thing we can rely on with certainty is uncertainty – as perplexing as that is.

☁️

The 2013 version of me, newly sick & grieving losses, one by one, was not even close to okay with this uncertainty. At that point, it felt like i didnt have “a future” – i couldnt count on anything, i couldnt do the things i had always planned to do, i lost my hobbies and the little everyday things that felt like they were given. the only thing in sight was a giant, daunting mountain, created by a combination of loss & medical woes.

☁️

Though the losses are no easier now, in 2022, i do feel that (for the most part) uncertainty has become a little less upsetting & a little more “okay.”  

☁️

Life has gone in a completely different direction than planned – in a different direction than the infinite number of directions i had planned out with messy pro & con lists. I used to be the indecisive decision making queen. Legitimately. And perhaps i lost my faith in my pro and con lists, because everything changed completely – and all the efforts didnt turn to anything in the end. And when i continued to plan my future, i just became stressed – because i didnt know what my body was gonig to be okay with.

☁️

I still have hopes and goals and dreams, illness can’t take that away, but they are a little bit more vague and i’m a little bit less attached to them. And i think that’s okay. Because if they dont work out, new ones will come into the picture that do. I have to move forward with my body – not so far ahead of it. And maybe ill just stumble upon something that i never expected, because i’m letting go of all of the attachment. And maybe this feels a little bit good? A little bit reassuring? It’s not letting go of the reins, it’s adjusting them, to allow for your hopes and dreams to show up in different ways.

☁️

☁️☁️And at this very moment, i have no idea what is next. But this doesnt scare me so much, because im still here, just figuring out a path as i go. And one little gift this has given me is to be able to live in the present, and to worry less about some of the things that once gave me a lot of anxiety.

☁️☁️

So if youre living in this little moment of uncertainty (or month or year or decade of uncertainty), know that you never have to have an exact path. You can, if it brings you peace and helps you move through life. But you don’t always need to follow a plan to be happy or to be content. So long as you keep the hope and realize that there’s probably (definitely) still a lot of beauty up ahead. ☁️☁️

February 2, 2022

**i’m first to admit just how dorky roller skating around my apartment is…and side note it’s actually really fun**

((also first floor apartment so noone can here me skatin around))

Focusing on & embracing movement rather than exercise <3  

& finding joy in movement

–

& letting my body decide how & when to move each day

–

& listening when my body says “no thank you” or “today is not the day”

Some days or months or years,  movement is not accessible

& other days movement feels so freeing and light

**No two bodies are meant to move the exact same way

**And no one body feels the same way every single day

-Movement can be whatever you need it to be-

Listen to your own body and your mind

–

–

Hoping you find something that brings you this feeling of freedom & joy today or tomorrow or the next day or every day

☁️☁️☁️

February 5, 2022

Sometimes I worry that if someone doesn’t fully understand what I mean or a decision I make or even just a day to day symptom, that I have to explain it better – or that I have to make sure they ‘get’ it so they know I’m truly experiencing it or they know the reason behind a decision or so that they are fully “in the loop.” but this is solely just a fear of judgment – or a fear that they will think I’m doing the wrong thing/ exaggerating something / or anything of that nature. But the truth is, sometimes there are things that others won’t “get” – be it because they’ve never experienced it, or because it’s just something that I’ve thought a ton about, and they’ve just heard about it for a few minutes. There’s no fault to either person here – the person who might not fully grasp it, or to me/you – the person desperately seeking connection/understanding.

☁️

And sometimes, it’s just brief interactions – when for someone to truly get it, they might not to hear basically your whole life story – which isn’t really going to work in the moment. I know for me, I need to make peace with knowing that I’m making decisions that I feel “good” about, and that everything I’m going through doesn’t need to be understood by everyone. Or maybe it’s okay if it’s understood at surface level . I think it’s also okay if there are certain people like close friends that really want to understand – and so you both communicate more. It goes both ways – sometimes we don’t always understand what someone else is going through – even if we do our best, or even if something sounds complicated or confusing or we wonder why they are doing what they are doing. Not in a way of shaming them or putting them down, but more so, we don’t have all the info – so it just doesn’t fully make sense.

☁️

I guess the key is just having compassion – for others, for ourselves, and for each of our situations. it’s okay if not everyone understands. it’s ok if a stranger makes a quick judgment – they don’t know our story. We don’t have to take it to heart. And it’s even ok if someone tries very hard to understand and still can’t quite get on our page – it’s the caring and the heart that matters . Do what’s best for you, and all of the people who love you will support you in that you are following your intuition and treating yourself with kindness. I think that’s what matters in the end. ☁️☁️☁️☁️☁️☁️

February 17, 2022

I wrote this book in the hopes that it would bring others comfort – a perspective that looks beyond physical health to emotional health & coping. Putting all of these thoughts into words and ideas onto paper brought me much comfort and reassurance too – I was able to remind myself that the specialness & preciousness of life can still co-exist with the heaviness & loneliness & fear of feeling Ill all of the time. ☁️ If you are in a hard space emotionally, physically, or both, I truly hope that this book can set you on a path towards finding some form of comfort in your body and in your life. That it can remind you of how simply irreplaceable you are, and how we see you coping and fighting and shining.

☁️I have learned so much from this illness & from my close friends & spoonies in this community who also face this difficult, sometimes frustrating, sometimes painful, life. And through writing this, have really connected with my dear friends who don’t have chronic conditions – it has given us a way to understand eachother and to talk about some of these experiences☁️

If you choose to read it, or share it with a friend or loved one, I hope it can open this same sort of communication for you & that it can remind you that you’re absolutely not alone. ☁️

April 11, 2022

The past few months have been a lil extra hard, tolling, & e x h a u s t i n g. A lot of the “little” but big everyday things have felt as though they have required a bajillion spoons — which I of course don’t happen to possess. I wish there were a spoon tree and double spoon days. Shall we make a chronic illness spoon monopoly game? Where you get to invest in little properties of spoons?

🏠

Im not sure where this heavy exhaustion came from – as the cooler weather is usually *a bit* better for me – it feels fresher and less fatiguing ! but i do know that with all of this emotional & physical tiredness, ive also lost my way a bit in terms of trying to organize my day / figure out my priorities// and live by my values. Sometimes chronic illness does force us to do life a certain way – and it can be harder to push against it when youre feeling really drained and sick. When you get headaches and fevers and throw up out of the blue. These arent easy days. BUT it does help if I make sure i dedicate spoons to things that bring me joy, connection, and allow me to show up for the people i care about and love.

☁️

I’m trying to listen extra hard to my body – to find those moments of relief – oir bursts of energy or inspiration or creativity,. & i know when i feel them, i gotta jump of them! When i have a friend on my mind, i just need to pause whatever im doing (even if it’s work), & text them or leave them a voice memo. Write them a note. Shoot them a message!

☁️

& the thing is, i always want to do this – and i always do when i can  – i care so much about the people in my life – but it sometimes just feels out of reach to do anything aside from just getting by. Sometimes health really does push back against connection. But i know that there are ways to connect, to find little pockets of light, to make your day just a teensy bit better if we come up with a bit of a plan 🙂 bc i dont want to just “get by”  forever & ever – i want to create some form of balance for myself, even during the extra hard seasons – even in the negative/”minus” spoon territory.

☁️

This isn’t really a fresh thought or super cool realization  – it’s just an intention. An intention put whatever i can into showing the people i love that i care about them, and connecting whenever possible  – even if it’s from my couch. There’s no one best way to have a friendship –  and texting, voice memos, and calls can be just as nourishing and special as in person connection if we allow them to be. Would love to know if youve found a good way to connect with others when you are outta spoons, or when you are just getting by <3

☁️

Sending spoons from the new and improved spoon monopoly game 🏠🥄

June 27, 2022

Letting my son know that we are moving again 🏠but only a few miles away this time! He says he’s ok with it 🥰

Fingers are crossed that a new home brings some new hopeful health changes 🤞🏼 we’ve had a tough year over here but sometimes you just need a new beginning 💕

(*this phone knows me too well as it autocorrected to a new begonia 🪴- I’m here for it!)

Sending fresh air, spoons , and energy of hope 🥄🥄

July 18, 2022

i was thinking through the many changes that illness has brought about in my life – both hard changes and positive changes. and t i sometimes feel like illness forced all of these changes and losses. which in many ways, it did. but sometimes i forget that i decided on some of these changes too – and realizing this kind of neutralizes things. it kind of suggests that illness can be neutral , and that sometimes if we work with illness, life becomes a little bit calmer and a little bit less of a constant battle.

sometimes reframing things can help make them feel a bit more comfortable – and can offer a new perspective on some of the things that used to feel like roadblocks. though illness could have “made me homebound” (or nearly so / made home life the majority of life), i also found the most beautiful special part of my life bECAUSE i was at home – LEO (i know i talk about him excesssively but he’s my favorite little soul in the world). I might not have brought this little guy into my world if I didn’t thinkI wanted company for all of the time I was at home. ((thinking about this literally makes me cry haha)).

**as a side note: i dont want this story to suggest that everything is positive (or stir up a toxic positivity sort of feeling) — not all clouds have silver linings. not all situations have positive sides – and not acknowledging this can be harmful to all of our experiences as humans. i think that reframing things can just mean sometimes being more gentle with ourselves and knowing that we always do what we can do to cope, to survive, to get through things – we keep showing up – to the world, to the living room, to/for ourselves, to a loved one, to a pet – it doesnt matter for/to whom or what. just making that little space for hope shows strength and grace <3

~~sometimes finding something cozy or comforting can make hard times a little less hard~~ ☁️☁️☁️

🌵🐩☕️🎨🖌

August 3, 2022

“Don’t dwell on what won’t keep you well”

i saw this short & sweet lil quote a few months ago and found that it popped back into my head the other day! when i first read it, i had sort of associated it with “wellness” – but then at second glance (or second thought), there’s so much meaning packed into these few words. in some ways, it’s a contrast to illness…. because of that dichotomy between illness and wellness. but i still stand firm in believing that wellness is a huge word, and we can define it however we want to define it – wellness doesn’t need to be the “trendy” “non-chronically ill” word we might associate it with. with illness , i think that not dwelling on what doesnt keep us well can mean putting more of our energy and heart into what feels good, what we “can” do, what “works” for us, and what steps we can take to feel better in our own bodies and minds moving forward. perhaps this means when we miss out on something, or when we don’t get to do something that we really wanted to do, we find some way to accept or jut acknowledge this huge loss, and then simultaneously, we try not to dwell in it. somehow we acknowledge the very real and often unfair sadness that we experience, while we then find a new plan for what will fill our time. if we dwell so much on our loss, we lose some of our power in the present. some of our peace in the present. i think power and peace can go hand in hand.i think this little quotes is also reassuring when something medical  that we previously had high hopes for (a therapy, a supplement, a medication, a treatment, a movement approach) falls through or doesn’t pan out quite how we were expecting – this is another (extra) giant loss that is extremely valid and is extremely hard. i think this loss goes deeper than we always acknowledge. because when something like this doesnt work out, sometimes we feel our hope dwindling. &&again, always, be gentle and the time you need to take care of yourself and to feel this loss. *  feeling is healing. * 

& then rather than staying in this place forever, rather than dwelling on something that doesnt keep our bodies well, our hearts well, or our minds well, we can take a little teensy step forward. out of this headspace. & reroute. what can we do next to bring that feeling of hope ?

whether it’s a medical step, creative step, or a cozy step – all of these steps can offer reassurance & a tiny bit of comfort to just get us out of the space we were in☁️

so *don’t dwell on what wont keep you well* can simply mean, when something doesnt work, we can do our best to feel it, (& when we are ready) try to leave the darkness and focus on the now or the next. Something little thats been on my mind ☁️☁️

what adds to the present, and what makes the present harder? Does this add to my overall wellness or does it hold me hostage in fear or discomfort or sadness ?these are the kinds of questions i try to ask myself & think about when something is no longer helping to keep me afloat rather than supporting me in taking the space to **float** on the rough tides.  ☁️☁️ sending you relaxing floating vibes and minimal harsh waves 🌊🌊🌊

August 8, 2022

Was so so happy to celebrate this sweet mama to be just a few weeks ago 💕💕💕 and cannot wait to meet this precious little baby girl !!! Overjoyed for you @m0rganm 💕

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Finally being able to show up for things a little here & there & celebrate all the wonderful moments with lovely friends has been so perfect and much needed ♥️

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*& keeping in mind that it’s ok to leave early & do what we can what we can & it’s okay to accept that we might needs lotsa lotsa recovery time *

Now ready for fall weather!!! And sitting by lakes and having picnics and hopefully 🤞🏼picking pumpkins. ((A little ahead of myself here 🥲)) but hey it’s august so we are close!!!

Happy Monday 🌷 sending cool vibes ☁️ and a hydration vibes (?🥛) in this toasty heat!

August 9, 2022

good morning <3  (still unpacking so don’t mind the background ! ☺️🌵☁️was listening to a podcast this morning 🎧and they mentioned something along the lines of (this is totally reworded as i already forget ha) “what is everything right now is okay?” or “what if right now you’re okay and for this moment, everything is okay?” ☁️i found this to be super comforting. i know it can sound a little woo woo and like logical mind comes and says “it’s not though” or “so many things are not figured out or are not okay right now”  or “you have so many things to do that are stressful!” but what about just like for  the moment – cant everything maybe be okay? ☁️meditation hasnt been my calling – and being in my body in that sense, as sometimes being “in my body” makes me very aware of my fast heart beat or exhaustion or *too* focused on my breathing so i start feeling like i can’t breathe (haha) — or even triggers that air hunger sensation because with dysautonomia, breathing isn’t always so easy to regulate! but for me, painting, doodling, drawing – all of these are my form of meditation and taking mind/body breaks. ☁️☁️this was a big circle i promise it relates! i think that it can be kind of calming and meditative to just think “It’s okay right now.” a this teensy tiny moment in time. or this big moment in time – whichever resonates. and maybe when hard things come, “i’ll figure this out” or “i’m okay for now, i’ll figure out tomorrow when it’s tomorrow” and even when not feeling okay, maybe just telling your body that it’s safe – it is okay, and you are there rooting for it? ☁️☁️just pondering – would love to know what you think about this sort of focus on the now, but really just reassuring yourself that “you got this!” ? and also holding space for the moments when it’s not okay right now, and when this isnt what you need in the moment to support yourself. i think there’s a time & place & moment for anything and everything – so do whatever brings you the most peace, comfort, or strength ☁️🌵✨

October 11, 2022

In honor of dysautonomia awareness month 💙- just a few photos that represent some of what it’s like to live with #dysautonomia . These don’t even begin to cover it, but they begin with my wonderful always supportive friend coming to be there for support for a dysautonomia awareness event 💙, to purple feet, eye bags, to frightening feet to some of the many special people who have been with me through all of this who have helped make a chronically Ill life still beautiful and meaningful. I am grateful for each of you. The final picture is the last picture I took before I got very very sick 9 years ago (in Oct 2013), and life changed drastically. It’s special to me as it’s with someone special , and also it reminds me to stay close to those who feel like sunlight (especially when life can feel so hard).

Dysautonomia encompasses so many experiences, and so many life altering symptoms . I am inspired by the many brave souls who keep fighting and keep seeking moments of joy and happiness and peace despite living in bodies that make just being a human extra tricky. I admire you for carrying on in the face of great loss, and in the face of illness and exhaustion.

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Sending love and encouragement to everyone impacted by any form of #dysautonomia – life is tough AND so are you.. AND I’m sorry you have to keep being so tough.

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October 12, 2022

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Sometimes the most nurturing thing we can do is just meet our body with kindness & gentleness and acknowledge how hard our body works – day in & day out – constantly fighting for us & with us🤍

October 18, 2022

🍁 all of the fall feels & coziness 🌻

a few little passages to bring your mind a warm hug –

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“am i moving too slowly?”

“you dont need to go fast in order to go far”

@thisfeelsnice

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“you didnt cause the hurt that tore you apart,

but you ARE the reason you’re

so beautifully stitched back together”

@bigfightinwords

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“those wings may look fragile but they will take you farther than you ever could imagine”

@apeaceofwerk

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“and then i was lost but i wasnt so afraid of lost anymore”

@keeleyshawart

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“you have come so far, never forget it.

you are still standing,

what an undeniable testament to your strength”

@bigfightinwords

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“you’re allowed to have a different story”

@geniakuypers

🍂🍂🍂

January 4, 2023

This year passed me by in a bit of a blur – a year when they days sort of blended together, a big chunky blob of days, rather than 365 neatly structured days with clear beginnings and end. Looking back, it felt a bit muddled up and a little bit extra difficult. But something I do take with me is the ability to live in the present. Without all these clearly structured weeks and months, I learned to sort of just see what each day brought – and I learned to show up for the days in whatever way felt best.

Sometimes I felt bad that I didn’t show up in the world as much as I had hoped – but sometimes health doesn’t permit this, and sometimes we just have to give what we can give, and not feel bad if we wish we could give more or do more or “have more” to give.  Life is tiring when so many “typical” things feel like a battle. So when you can do things despite the struggle, I hope you intentionally thank your self – your body and your mind. And when you can’t, I hope you give yourself permission to let that day just be a day. 

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**I think it’s important to remember that just like one moment is just a moment, one year is just a year. It holds space and it holds time and it holds memory – but it doesn’t dictate what’s next and it doesn’t judge you. There is always space and room for things to get better. But sometimes things don’t get better immediately. And there is always space to sit in this. *

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But just like the harder days or harder moments or harder seconds , I think we can accept that things have been really difficult and really heavy, and we can realize that we are allowed to put them down – we are allowed to release the load that has been weighing us down and we can carry on to whatever is next – without having to bring the hardest parts along with us

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I want to celebrate the  many moments that brought so much joy into my world – Seeing my friends become moms/be moms, seeing my friends adopt new fur babies into their lives (also mamas) , spending time away on the water in a cozy air bnb, enjoying nature  & enjoying the indoors ;), creating art on my iPad, celebrating my friends getting married & having the best time at their weddings ♥️ 

learning with skillshare & through podcasts & interviews <3 , starting new projects, becoming closer to special soulmate friends, feeling both more and less connected to my body (in a good way), and as always, loving my little poodle & lop more than anything in the world. 

These are the moments that made this year special. Some are ordinary, some are special days, and some are just some moments that made me smile extra.  Not every moment was perfect, far from it, but so much specialness came from this year – so many feelings that I want to bring with me into next year.


I hope you can take the time too to celebrate any or all moments in 2022 that gave you encouragement and hope.

☁️☁️☁️Sending hope, peace & encouragement  in this new year. ☁️☁️☁️

February 21, 2023

A little birthday celebrating & a welcome to the new member of my family 🤓

Meet Milo! My little guineapig capybara ♥️

It feels funny to adopt a guinea pig at 31 🥰 but I adore animals and always wish I had the energy to volunteer in some way to helps some little animal babies out – & while I can’t commit to volunteering in person, I can bring a new little guy into my home & care for him!

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Leo & Oatly are still adjusting to Milo and Milo is still a little skeptical of all of us 👩🏼‍🦰

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Hoping 31 brings a little more peace & Hope than 30 – but here’s to leaving space for all that is to come ♥️

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A little quote to leave ya with:

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When you start to feel like things should have been better this year, remember the mountains and valleys that got you here. They are not accidents, and those moments weren’t in vain. You are not the same. You have grown and you are growing. You are breathing, you are living, you are wrapped in endless, boundless grace. And things will get better. There is more to you than yesterday.

@morganharpernichols

April 5, 2023

Two years ago this book baby was born ❤️ I gave the first copy, the “draft” version, to my Grandmom for her birthday – as she was my biggest encourager when it came to writing & this book! Getting to connect with others has been the biggest gift of writing – and the biggest source of joy. a dear dear friend gave this book to her student – who had been diagnosed with POTS. friends mentioned parts of it to me that spoke to them – those with and without chronic conditions. After writing this book, I took a bit of a writing break – partially due to loss/grief, partially due to the exhaustion of writing and the exhaustion of life! , and partially due to a bit of a long extra rough patch with illness. But little by little writing has come back into my life – and reminds me to always remember that creativity brings peace, connection, exploration, and hope is encouraging me to keep practicing art! Art of any sort ❤️ we gotta find those things that encourage us, when life is extra hard, and when a lot of life is already out of our comfort zone I sorta find that illness can feel both in & out of our comfort zone – we adjust to it but it’s not especially comfortable or reassuring). chronic illness is a roller coaster, and sometimes it doesn’t always feel so graceful! But I think that’s part of the healing and part of the coping and part of the flows, the dips, the peaks, and the ongoing never-ending ride of chronic illness. I’ve started building a website – but am trying to think of a way to make it ore interactive or form something more community-oriented on it. It’s a work in progress, but hoping to make a cozy corner of the internet. ❤️

May 16, 2023

I was just listening to Morgan Harper nichols’ podcast ✨✨it’s so very comforting & dives gracefully into the depths of so many ideas and perspectives – and makes you think about things from a bit of a different lens ☁️☁️ In this episode , she spoke about a painting she created of closed doors – and how normally closed doors are “cold” or negative – missed opportunities or closed pathways. Endings or obstacles. But this time. she decided to paint these doors as warm and comforting ✨☁️I don’t know why but this resonated so so much with me – and I wanted to share because it’s such a beautiful way of rethinking certain closed doors – certain blocks or detours or endings . This made me think about how when we do faced closed doors – when things don’t work out, when our path gets derailed or ends unexpectedly – when we face loss or a let down or when what we hoped for falls through or shatters – we always still find a way forward. I don’t mean this in an overly positive way either – the pain of a closed door can be huge and hollow and can ache deeply . A loss of a relationship or friend or loved one or a loss of a hope or dream – or another detour in our ongoing battle to feel just a bit better – all of these are devastating. ☁️And , simultaneously when we do face this sort of closed door, we always seem to still keep moving. Somehow , without fail, we reroute . We create a path forward , a new way forward. And maybe it doesn’t always feel warm, or comforting – and maybe at times it feels like trudging through quick sand – but these small and large steps in a new direction, up a new mountain , show such resilience and strength in a big way.

With chronic illness , I think it’s safe to say – a lot of us face closed doors – sometimes

Over & over again. And while ridiculously hard, I hope we take time to remind ourselves how we keep going – how we keep persevering – how we continue fighting for our bodies . How we march on. ☁️☁️ And while I know over here I’m definitely still working on this, – I hope we can all start to see – even a little – the warmth and courage that exists in creating new paths ahead 🤍

February 14, 2024

Just some little joyful photos of my son at the lake on Christmas!! (Looks like he’s taking his first steps ❤️ ) because he is a huge part of the abundance of life ❤️

I’ve written so many little tidbits of thoughts and idea the past few months – but for the most part, they seem entirely disjointed… tiny little fragments of bigger ideas that never fully came together. But isnt that sort of life? Lots of little moments and instances of time – moments during which you feel something, big or something small, and then by the time youve started to process it, the next moment starts and so all of the moments turn into a long chain of open thoughts – a string of beads with no knot.

((rereading that, i also clearly see that i described adhd lol 😶🤍) but maybe some of the thoughts and moments do string together, and maybe when you realize it, you are growing so much – by adding one bead to the string at a time. 🩷

I found a few little notes on my phone, from different days, and realized I could string them together and together, they made sense – maybe i’ll just leave it here, in the hopes that maybe someone else might resonate too. so here goes 💁🏻‍♀️

It’s okay if the ending overrides anything new or anything good – for a little while. Or, for whatever “while” it takes for your heart to heal its bruises, or our hearts to adapt to life in the face of loss. It’s okay to take a moment to see everything missing without being able to appreciate what is still present. Oftentimes, the greatest losses are replacing the parts of our heart that once had so much love or so much abundance.

Because usually, in time, the feeling may shift and you will very quietly grow around this feeling. The flowers will bloom around this loss. Sometimes you’ll notice the flowers, and other times you’ll notice the missing center of the blooming flowers. The emptiness framed with beautiful vibrant blooms. Sometimes the loss will feel so big that the brilliant hues of flowers will seem profoundly insignificant. And still, other times, youll fall deeply in love with the vibrant flowers and breathe in their sweet aroma .

And many days, probably more days than not, you’ll feel both the loss and the great abundance . The pain and the joy – all in one breath. The climb up the mountain and the climb back down. And i think this is all of life – making space for gratitude for pain, for hope, for loss, for heaviness, for grace, for empathy, for for kindness, for humor . I think abundance is about having the ability to see all of the colors and feel everything so much – and realizing that you can still feel full. 🤍🌿

All we can hope is if not today, then one day soon we will be able to feel the warmth of what was, or what has been, while still making space for the glimmer of what is and what could be ⛅️🌤️✨