Comorbidly Yours,

Honestly, I don’t really feel like I know who I am anymore. I don’t recognize this body anymore. I feel so detached from it. Wholly out of control of it. In the last 7-8 months I’ve gained 40-50 lbs, none of my Drs know why. My diet/activity really haven’t changed. Historically, I’ve struggled with #malabsorption & sudden weight loss. This is new & unexpected. It’s taking a toll I could not have imagined. Coming into the warm season this is taking it to another level, none of my favorite warm weather clothes fit. No matter how physically bad I’ve felt in the past, I’ve always been relatively confident in how I’ve looked. Further, the suddenness of the gain has impacted my joints. I’m having more trouble staying mobile than ever, my #chronic pain is worse, my #chronicfatigue is worse, my #migraines are worse, I’m experiencing new GI complications, my #allergies / #mcas symptoms have gotten SO much worse. I had some medical appointments this week, & now referrals back to several of my other specialists in the next month, l tons of labs, another MRI of my spine... I’m grateful for the care & attention, but scared & overwhelmed. It’s all very activating. Right now I am grieving. The life & roles I once had, the sense of ownership & control over my life & body, my former levels of function, my physical presentation. All pieces of me that feel chipped away, out of touch, out of my control. I feel sometimes like I’ve died & am just some remnant here haunting myself. A shadow version of myself, constantly trying to claw back to who I was & what all I used to do. But #Iamnotaghost & I have plenty of life left to live. Right now I’m grieving, & in pain in every way. And that fucking sucks. But also, I know what I have to be grateful for, & I am. I know, I need to allow myself some space & compassion to feel this pain for now before dusting off to try again. I know I am so much more than this hurt. But today, for now, I just need to sit with it. So, this is who I am. I am lost. I am pain. I am grief. I am also joy, & rainbows, & love, & music, & art, & energy, & advocacy. I am a voice. I am powerful. I will keep moving. No matter the pain. https://www.instagram.com/p/COViXZ2jUSv/?igshid=iryu8ximkyl6

Image description: watercolor background with text “EXISTENCE SHOULD NOT BE A RADICAL ACT” The more oppressive our society is, the more likely our very existence in it becomes innately radical. The more marginalized ones identities are, the more radical their existence. I’ve heard many people say that they don’t want to be too “extreme”. That they feel more comfortable identifying with “moderate” world views. But how when simply existing is so radical unto itself? Some of us are born radical, whether we want it or not. It does not need to be this way. As we work towards a more inclusive and accessible society rooted in foundations of love, community, and interdependence (more on that last one later), the less radical simply existing will become. I am radical. I don’t have a choice. #radicalexistence #disability #justice #disabilityawareness #disabilityadvocate #disabilityjustice #invisibledisability #chronicillness #accessibility #access #inclusionmatters #inclusion #eds #ehlersdanlossyndrome #ehlersdanlosawareness #migraine #dysautonomiaawareness https://www.instagram.com/p/CLpqoqkDYz7/?igshid=zd6vktkcboq4

I’ve been mulling this over a lot lately. The last several months have been rife with tremendous grief, hitting from so many angles. Macro and micro. And I KNOW I’m in no way unique in this experience. So many are experiencing major loss in death, in stability, relationships, health. Everywhere, everything. It feels so unending. My body has been ANGRY, my health is the worst it’s ever been, and my systems are failing. I’m in the throes of a disability claim, and it’s every bit as awful as I knew it would be. I’ve had three deaths near to me since November. I’ve been on repeated emergency steroid packs that absolutely wreck my sleep and mood regulation. It’s exhaustive. It’s physical and emotional whiplash. I’m angry and so sad, and so exhausted every waking moment. My bandwidth and patience for others is as thin as ever. It’s hard not to isolate when feeling this way, when nothing and no one feels trustworthy. But what I need to do, and continue to challenge myself to do, is to lean into my community. Insulate myself into that warmth and support that is NOT everything awful in this world. To insulate into what resources I do have, keep communicating with my healthcare team, making use of what connection I have. To stay afloat and not freeze in these trying times. Please, if you are struggling, resist the urge to isolate yourself. You are not alone. Take reprieve and distance where you need to. Insulate yourself from media, from toxic family members or other relationships, insulate yourself from the ugliness abound in this world. Insulate yourself with self compassion, and community. You are not alone. https://www.instagram.com/p/CLaHXXQjHsm/?igshid=1j6k7yig4iv8e

I’ve trying really hard lately to re-center and focus on what makes me feel whole, and like a person. It’s been a rough few months, I’ve been flirting with #disassociation, maybe more accurately #depersonalization. There are a lot of factors, having a neurological condition that literally warps my visual and audio input surely doesn’t help. But also, I’m grappling with so much transition, that all happened so quickly. It’s exhaustive, May was a very difficult month. But I am TRYING so hard, and I have been playing music again, try to at least a little every day. This isn’t a new song, just one I like and think I have improved with. #weezer #butterfly has always been a favorite of mine. It doesn’t perfectly suit my voice, but I don’t care. All I can say is, shits hard, but I’m trying ya’ll, I really really am. #fatigue #cptsd #migraine #potssyndrome #dysautonomia #ehlersdanlossyndrome #eds #hypermobility #chronicillness #invibleillness #invisibledisability #disability #iamnotaghost #music #musictherapy #selfcare #ukulele #singing #breathing https://www.instagram.com/p/BzD45b1Af3T/?igshid=tnn7ttohskco

Much needed time with some very dear humans 💕 @jinyaramenbar #ramen #selfcare #gendernonconformingsquad #lovemyframily https://www.instagram.com/p/ByvS1-SgT_I/?igshid=134gdhxdeun2k

My little fern is springing back to life. I thought I had killed it by forgetting to schedule watering while I travelled recently. But I reported it and watered it just in case. I am trying to focus on this today. It’s not been a good week. I take my third dose of #aimovig tomorrow, and I think being at the tail end of my month, combined with some funky weather, hormonal stuff, and external stressors is messing me up pretty good. I experienced a pretty bad subluxation of my shoulder over the weekend, and didn’t stay down like I should have, so it has escalated. I had already been fighting #migraine. But the muscle spasms throughout my back and neck have dialed everything up. I am exhausted, I am so sick of being sick, I am so sick of being in pain, I am so sick of not being able to simply live my life without feeling punished for it. I got through my “work” week, I only nanny part time for now, and I truly love the children I work with. Today, was a good day with my little boo, I have been teaching her #ukulele and truly I was grateful to be distracted. But once I got home I laid on the floor just inside my apartment and I sobbed for what felt like forever. I won’t sugar coat it, it was bad. Being chronically ill is HARD, being “young” and getting so shut down by living merely a shadow of my former life is demoralizing, it is devastating. I speak a lot about how grief intersects with chronic illness, it’s just this feedback loop. I start doing better, so I start doing more, my body says no, I have setbacks, I am in pain, and I grieve that defeat, and then I grieve all of it. All of the HUGE changes I have had to confront and accept in these last few years. All at once, all over again. I am going to try and get into a new program that focuses on the behavioral health side of living with chronic conditions. I know I need to, I know I am currently suffering more than I have to be. But it’s so so much harder to self advocate than it is to advocate for others. So, be kind to yourselves, be kind to one another. Life is hard enough without beating yourself up on top of it. Everyone, even health people confront defeat, confronts aging, and changes. Just keep growing. https://www.instagram.com/p/Bya2Y1jgaIt/?igshid=jeczvcqdauc

I’ve been busy, for better or worse. Some highlights, I officially have #unicornhair again, but it’s very pastel and I haven’t bothered taking good photos so this is what we got. #Savannahcat snuggles post road trip. I was able to spend Memorial Day weekend visiting one of my favorite people, who also happens to be very sick. All in all it was a wonderful trip, I am so grateful for that bit of time. In many ways it was refreshing. But, no matter how inundated with chronic illness one might be, it is never easy to accept when someone you love is sick and suffering. So, been working through some of that. Also, traveling with chronic illness is always its own special adventure. I got a little out of sync and missed some meds throughout last week and paid for that over the weekend. I feel a little better today. But definitely been very migrainous since Saturday and relying on my #triptans it always kind of astounds me how many weird issues I have that I am now aware are part of how I experience #migraines but maybe I will post more on that another time. I do still think that overall, the #aimovig has absolutely increased my quality of life, but still, there are limits. I’m not great right now, but I am ok. I have good supports in my life, and I am so privileged in some ways. I will not take that for granted. #chronicillness #depression #anxiety #migraine #dysautonomia #ehlersdanlossyndrome #heds #hypermobility https://www.instagram.com/p/ByTrCIAARQi/?igshid=eh5umlq67dr

Sorry I haven’t been very active. I am not doing very well. This is just a strange and frankly painful time of transition in my life. I wish I were doing better with it than I am. But I am not, I am not well, and trying to let myself be, and know that sometimes it’s ok to be in emotional pain. Sometimes, emotional pain is s normal healthy response to difficult times and happenings, no matter how much we want to stop feeling it. That’s where I am at. I am in pain, for a whole lot of reasons, and I just need to keep moving, and hopefully, get to the other side of it eventually. But I am also tired, I am depleted, I don’t want to feel so so unhappy anymore. I don’t want to fake it. I need to make an appointment with a psychiatrist, I know, but I am dragging. I don’t know why this is so much harder to accept and deal with than all my many other health needs but it is. And that’s why I think it is important to be candid about. Physically I am reasonably stable. I do think the #aimovig is helping with my #migraine pain, and almost more significantly all the other various atypical migraine symptoms I suffer with, which I truly am grateful for. This time of year comes with lots of significant weather shifts, so I have had a couple migrainous days, but my baseline is better for sure. So at least there is that. Also, here are some dramatic photos of #tacos I just made. #chronicillness #mentalhealth #depression #anxiety #trauma #cptsd #heds #ehlersdanlossyndrome #hypermobility #vestibular #migraineinducedvertigo #vertigo #orthostatic #dysautonoma #potssyndrome https://www.instagram.com/p/BxunSO3gpD7/?igshid=1342lkvlcdjh2

#teaparty time with my favorite neighbor. It’s a rainy grey #mothersday and I have been feeling very reflective as my life has been in such a significant state of transition for a long time now. This month, symbolically and kind of literally, a lot of that is coming to a head and I am admittedly struggling. I am just so tired. But, we must relish the little things, and have gratitude for whatever pieces of joy we might find in life. For me, the fact that my neighbors toddler decided so early on to their moving in that we were to be friends has meant the world to me throughout this past year. It’s such a sweet distraction, children are fantastic little mirrors, they can help us reflect on so much, and are so earnest themselves. Today I am feeling nostalgic of the many childhood tea parties hosted by my Grammy, she never skimped either. We always used real tea, and tea sets, and she would make little muffins or other treats with me. I remember those times very fondly, and it’s such a treat to share with my little buddy from the apartment below. Thank you my little friend for keeping me on the ground, and present. And sometimes making me laugh so hard it hurts. Children are such a treasure. #gratitude #mindfulness #childhood #depression #chronicillness #transition https://www.instagram.com/p/BxXvDLMAOux/?utm_source=ig_tumblr_share&igshid=33p5rpssimw8

Finally took my second dose of #aimovig a week late... I don’t know why, been really #demotivated lately, for a lot of reasons. But yeah, I should not have waited, I definitely had a sudden increase of #migraine symptoms in this week and change... I am prescribed a double dose, I actually attempted to take it last night but one of my #autoinjectors failed. Fortunately the pharmacist was nice and replaced that one today without issue, it can happen and the manufacturer will cover it. Anyway, just took my second injection, went smoothly. Opted to do the #pinchmethod and do my injections in my stomach. I think it stung less than doing my thighs, but as you can see I actually bruised notably this time, which I did not the first time. Next month I will try harder to stay on schedule and it wait. I also do #botoxformigraines again next month. May isn’t a great month, for a lot of reasons, but I’ll get through it. #chronicillness #invisibleillness #invisibledisability #chronicmigraine #migraine #vestibular #ehlersdanlossyndrome #heds #hypermobility #dysautonomia #depression #sickofbeingsick #overit https://www.instagram.com/p/BxOT42NABX2/?utm_source=ig_tumblr_share&igshid=1hk6zlv6j4bb3

Sorry I have really just needed to veg out lately and detach some. But I do have my second dose of #aimovig ready and just need to do my injections. Today was a couch day though, for a lot of reasons, but at least not #migraine reasons. I have been binging #marvel movies and trying to keep my brain occupied. Hopefully I will see #endgame soon, but still have some catching up to do with the films! I will have more updates tomorrow. https://www.instagram.com/p/Bwx-GibAGyb/?utm_source=ig_tumblr_share&igshid=1i0v4ema0u06m

For the last fourteen days I have been taking ten extra pills per day, split in two doses. I finished the course this morning and am SO GRATEFUL! There is growing research on the mechanisms of why people with #ehlersdanlossyndrome seem to have some form of compromised immune response... I wish I knew better why or how, but I catch EVERYTHING! Despite efforts to be extra prudent. At least #hpylori is supposedly something you can only catch once! And hopefully my pending labs come back clear of it! But I hate being on so many #antibiotics! On the headache front, I’m feeling alright! Woke up with notable #tmj pain, but that’s a different issue. My #physicaltherapist did some #manualmanipulation today to deal with that! And my #botoxformigraines is scheduled now. Managing #chronicillness is a dance, one you never get to stop, but I am at least some of the steps are becoming second nature. I’m tired though, it takes a lot mentally sometimes to manage, it’s not just the physical part. The constancy or it takes a toll mentally for sure. #invisibleillness #invisibledisability #migraine #heds #hypermobility #dysautonomia #mcas #mastcell #ibs #ibd #guthealth https://www.instagram.com/p/Bwnop-DgmZO/?utm_source=ig_tumblr_share&igshid=1rotxtcbkpk1e

#pistachiomilk is delicious, foams really nicely and is the perfect color for a #matchalatte! I was so happy when I scored a bottle on clearance at a local market I frequent. Anyway, this is my happy moment of today. As far as Mondays go, it was a good one I think. No significant medical issues. My legs and feet have been intensely achey lately, but such is life with #ehlersdanlossyndrome so I am trying not to dwell and enjoy what aspects of life I can. I pick up my second dose of #aimovig tomorrow to be taken this Friday! (FYI it should be refrigerated if you aren’t using it right away!). And I am more hopeful than I have been in a long time about better management of any aspect of my health, so WIN! I also am wrapping up a 14 day course of very strong antibiotics for an #hpylori infection that surprised us all... I did NOT have it only 18 months ago... but I am so relieved to be through these AWFUL #antibiotics no amount of #probiotics could spare me the ill side effects 🤢 so hopefully I see more improvement on the other side of that too! #nannyjob was good today too. #littleboo and I shared some candy and blew lots of #bubbles 🤗 #heds #chronicillness #invisibleillness #invisibledisability #migraine #chronicmigraine #dysautonomia #dysmotility #mcas #mastcell #hypermobility #thatsicklife #iamnotaghost #symptomtracking https://www.instagram.com/p/Bwk-BuFAnxb/?utm_source=ig_tumblr_share&igshid=z38dcgs5lgm5

Been spending a lot of time staring at the wall lately, or the floor... or whatever. There has been a lot of tragedy and significant transition happening in my life, and around me for a sustained period of time. I am struggling under the weight of that s little extra right now, but dealing proactively with my #behavioralhealth specialists. Some of this relates to my #chronicillness but there are a great many things that have happened outside of that to. #trauma and #stress can have negative impacts on the physical wellbeing of an otherwise healthy person, so yes, I absolutely believe that this mental and emotional strain has intersected negatively with my conditions. And that can feel scary, especially when for so much of my life my physical well-being, or lack there of has been conflated with, and simply as nothing more than a #mentalhealth issue. And that’s not fair, that’s incredibly damaging to a person, and I know many of us have endured that particular trauma, there is no other appropriate word, it’s traumatic to be medically neglected in this way, and gaslit in lieu of treated. But, as I said, I am being proactive, I speak candidly with my health providers on all fronts, and am SOOOOO #privileged to be able to do this. I sees #therapist regularly, and check in with a #painpsychologist that helps coordinate all my specialist care and keep synthesize the whole picture of my life. That does help. But I am exhausted, and questioning many things right now. I believe that I WILL be ok, but I do not feel ok right now, and THAT is also ok. We don’t always have to be well, and we need to make space for and be kind to ourselves and others when we are not well. I have been working on this piece. All that said, for as in my own head as I have been, I am distinctly without headache. And I am genuinely grateful for the #aimovig which I will refill in less than a week! Hopefully month 2 is even better, and I did schedule for #botox for #migraine because I am still dealing with a lot of tension in my facial muscles, which is partially due to the #hypermobility. The #botoxformograine should definitely ease that. #invibleillness #depression #bipolar #dysautonomia #heds https://www.instagram.com/p/Bwf6LUxg_uZ/?utm_source=ig_tumblr_share&igshid=eugc5bqn65tk

#littleboo likes to pick flowers for everyone right now, it’s very sweet. On the #migraine front I do feel that the #aimovig is helping. Unfortunately, I’m complicated and have much more going on... I am currently fighting a stomach infection, that I did NOT have 18 months ago... so kind of weird I do now...I am on massive amounts of antibiotics and now fighting the side effects of those. Additionally, been dealing with a family tragedy. So it’s been a rough week or so. But, OVERALL, I’ve had a notable lack of severe or sustained head pain, and functional energy levels. So, at least it’s a win on that front. Particularly considering this sort of stress is often a #migrainetrigger also of note, now that much of my general head pain is less persistent I am acutely aware of how much tension I carry in my facial muscles. Which does get painful, but I feel like I have shaved off a layer. My #neurologist suggested we try #botox again in tandem with the aimovig and that should really help even more with low risk of side affects. I did the Botox once before and it did help a lot in some ways and not in others, life was crazy so I didn’t go back. But I think it’s worth doing again and trying to keep a schedule for it. I was stressed it would exacerbate my #hypermobility but it didn’t! I have been SOOOOO TENSE! #chronicillness #invisibleillness #invisibledisability #heds #ehlersdanlossyndrome #dysautonomia #ibd #ibs #mcas #mastcell #antibiotics https://www.instagram.com/p/BwYM_zcgrdv/?utm_source=ig_tumblr_share&igshid=saf3hgphcowv

Sorry I needed a couple days to myself. But physically I am doing pretty well, I used my triptan last night and this morning. But I do feel that the #aimovig has decreased my #migraine symptoms overall. Now officially two weeks in. Life happens fast and hard, tell your people you love them and how much you mean to them. on a brighter note, I painted these #pineapples with my #littleboo on Thursday. It was a happy time. I’ve been having fun recently revisiting my fine arts training with children’s craft materials. #chronicmigraine #chronicillness #invibleillness #invisibledisability #heds #ehlersdanlossyndrome #dysautonomia #mcas #mastcell #nannylife https://www.instagram.com/p/BwOA4WJg8n2/?utm_source=ig_tumblr_share&igshid=2lqc3ohw8mnh

The most #Baltimore sandwich ever lol. It’s a #crabcake and #shrimp salad #club sandwich from the weekend with my dad, forgot to take photos today 😳#migraine pain is definitely largely absent today! And no #fatigue. Still dealing with #brainfog, but my upper back is honestly flaring so intensely right now I can’t think straight. The fact that my cervical #spine is so inflamed right now and I DON’T really have a headache is telling though! And makes me feel like the #aimovig is definitely doing something. Almost through week two! #tinnitus is back, but that’s every night... hopefully my spine is less angry in the morning. I used #heattherapy all morning, and then @tiger_balm_us patches, two placed vertically stacked from my neck down for most of the day. I should use my #TENS unit but I am already in bed and it’s too hard to place the pads properly myself. I’ll get a friend to help tomorrow and use it before I go to #nannyjob. I can lift so much more now for having been through over a years worth of #physicaltherapy and working through the #muldowneyprotocol but with #hypermobility its twisting and lifting in combo that is murder. I think I put something out of place playing with the infant I watch regularly, she’s so cute, but I have to be more mindful of how I am lifting her and not swing her like I was, no matter the giggles 😭 so eff #heds #ehlersdanlossyndrome blows. #chronicillness #invisibledisability #invibleillness #dysautonomia #mcas #mastcell #allthesick #sickofit https://www.instagram.com/p/BwGbHo2HGFQ/?utm_source=ig_tumblr_share&igshid=13m185ui5g8gy