Medical Marvel

20 Years Old with the Body of an Old Lady Conditions: hEDS, MCAS, EoE, chronic daily headaches and migraines Also queer af

[disabled-astronomer]

Life Update

I haven't posted here in a while, so I figured I would check in with myself.

The PT has been working wonders for me. Just strengthening my thighs and pelvis has helped my lower back and knee pain soooooo much. Would recommend. My PT has hEDS so she specializes in bendy folks. I know I am getting excellent care. She just gave me more things to help if my ribs pop out and mild rotator cuff strengthening exercises. Overall good appointment .

I have gotten several silver ring splints through my OT. Two of them haven't come yet, but the one for my thumb is so pretty and just a great thing. My OT also specializes in TMJ so I am now seeing her for that. Pretty excited to finally have my jaw looked at. No one ever knew what to do with me because my jaw was hypermobile, not hypomobile. I'll hopefully get more jaw stability.

I am also getting RFA next week on my forehead nerves. They like to ignore the botox and hurt like hell. The botox works everywhere else though. Getting nerves cut seems a bit extreme, but I guess if it keeps the pain away, sure, why not.

Anyways. There's an update in case anyone wants to know more about my life.

[inverse-roses]

Last night, I barely slept. I was anxious from the days conversations and the omnipresent pain in my hips worsened as the night went on. I didn’t say anything, I didn’t want anyone to know I was vulnerable.

Today, I couldn’t walk. My knees and ankles constantly buckled beneath me. They ached, and several times I couldn’t help but to wince or gasp in pain. I tripped and spilled my box of genotyping primers all over the floor. I didn’t say anything, I didn’t want anyone to think I was weak.

This morning, my head pounded and felt swollen, making a sound of an earthquake echo in my head. I laid my head on my desk for an hour, my eyes heavy with sleep, pain radiating from my joints. I didn’t say anything, I don’t want my boss to think I can’t do my job.

This afternoon, I sat through 2.5 hours of lab meeting. I could barely sit up in my chair. My hips felt hot with my body trying to support itself. I got up several times to stretch my legs, every time smiling at my colleagues assuring them I was doing just fine. I didn’t say anything, I didn’t want anyone to think I didn’t want to be in lab meeting.

Tonight, I didn’t get home till 6:15. I built a new shelf and didn’t have dinner because I was so dizzy and nauseous, nothing sounded appetizing. Every time I stood up, my heart raced and my vision went black. I didn’t say anything, I didn’t want to upset my roommate.

Tomorrow will be the same. Rinse, and repeat. I will do 9 perfusions and refill my solutions. I will go to the hockey game with the guy I am seeing. I will smile. No one will know I’m in pain but me. I won’t say anything. I don’t want anyone to know. But I need someone to know. Because it’s eating me from the inside out.

[sunflower-cane]

having an illness is so weird because even little things make you question how your body/mind works.

does everyone yawn like that?

does everyone get nervous over that?

is this normal? or just normal for me? is this normal for everyone or just everyone w my illness? or not normal at all and i should call a doctor?

wait no one does that? so it is me????

wait thats something healthy people do too??? so it isnt just me????

its like a constant state of paranoia and confusion and no answer is statisfying so you just sit there and ?????

[madeofbees]

This is so true and not talked about nearly enough. Being chronically ill turns you into a hypochondriac because you never know what’s a cold or what’s the next diagnosis that might kill you. Do I need to go to the doctor or is this just my normal? You never know.

[eosinophil-hate-blog]

this blog is great omfg. i have eosinophilic bronchitis, nowhere near as serious (mostly just an annoyance) but i’ll join you in hating eosinophils

Solidarity!

[disabled-astronomer]

Gotta add eosinophilic esophagitis.

[disabled-astronomer]

Doctors Ramble

Just a ramble thought process while I am waiting for a class.

So as I am bored and just scrolling through some disability blogs and tags, I always notice a common theme: negative doctor experiences. This is something that I know is extremely common with people with disabilities, but not really something that I have experienced myself. I have personally only had a few instances where I had issues with the doctors, but like 95% of my experience in the medical system has been very positive.

My one major time within the past few years was with a gastroenterologist whom I was seeing due to a flare up with my EoE. I knew what the problem was and she agreed and sent me in for a scoping as well as getting me the proper medication. I took those medications for several weeks before getting scoped. I was even feeling a bit better. When it came time for the scope, I only had an elevated count in one part of my esophagus. Nice, that means the medications are working. Well, I got a call from the doctor’s nurse, and the nurse told me that because I didn’t have two sections with elevated counts, that EoE wasn’t my problem or something along those lines. I asked what the doctor then thought was going on, even though I have been diagnosed with EoE for like 8-9 years. Nurse calls me back and the doctor just told me to follow up the my PCP because my symptoms didn’t match or something. I was so pissed. I may have been kinda snippy and pissy with the nurse. I knew what the problem was, so I just ignored the doctor and decided to never go back to her.

Anyways, that is my one kinda nasty experience. All of my current doctors are the most amazing people, and I cannot thank them enough for keeping me healthy and always taking me seriously when I have problems. Whenever I have issues with my migraines, the neurology staff always works hard to get me in as soon as possible for a nerve block. The PA that usually does my Botox injections is so kind and has really helped me get the best treatment for my migraines. My EDS doctor and PT that specializes in EDS/hypermobility are also wonderful. The EDS doctor did his examinations by asking my permission if he could do every little thing, listening to me, adjusting my medications, and praising me for how hard I have been working for my health. My PT has hEDS so she understands and is so knowledgeable about anything to do with EDS and mobility. She is always looking for ways to improve her treatment and recommendations for her patients. My allergist even knew about EoE and was surprisingly up to date on the latest research and treatments. He even knew about EDS and suspected MCAS for me and knew exactly was to do for me. Even my PCP and the PA that work under her are great. Whenever I need any referrals, she doesn’t question it and just sends them off. Also, she put my IUD in, and it was a great experience.

I know my experience isn’t what’s typical, and it hurts my heart that so many people like me can’t get the medical treatment that they require. I couldn’t be where I am today without my doctors, past and present. I know I have some serious privilege as I am a white, cisgendered, middle class person, and I live in a university city with some of the best healthcare in the nation. I am also forever thankful for my mom for showing me what it is like to fight for your medical needs, to be heard and never ignored. It’s exhausting and painful to always be fighting, but god damn it, we need to live.

To all the other disabiled folks, we got this. Keep fighting.

[slowlymadeart]

[disabled-astronomer]

Another One

Went to Starbucks today. The drive thru lady had a bunch of silver ring splints and a posture brace. I asked her if she had EDS, and she got so excited that I had it too. We had a nice little conversation. Feels good to find someone else with it.

[refinery29]

If you’re healthy you probably don’t realize how demoralizing it is to spend all day in a hospital gown

But now a new collaboration is designing fashionable hospital gowns to encourage sick teens that they’re not “just a hospital patient.” See how they react when they try their new robes on.

Gifs: Starlight Canada

[chronically-something]

This is amazing! AMAZING. Chronic illness does its best to strip you of your dignity, your control, and your identity. This is a great example of how things that might seem trivial to a healthy person, can make all the difference in someones life. 

[sunflower-cane]

EDS peeps i gotta know how yall feel towards the IUD. My doctor said it seems safe enough for me to get one and i need it but

Like

What are yalls experiences w iti

[disabled-astronomer]

I got my IUD about 7 months ago. I got the Liletta IUD. The doctor had like 3-4 options for them, and I just left it up to her to pick. At the time, I didn't know I had EDS so I went in just wanting to stop my periods and get off the pill. For me, the insertion was mostly painless. It was a bit uncomfortable when she measured my uterus and then inserted the IUD. It was kinda like some sharp cramps, but then it was all done. I did get dizzy and lightheaded afterwards so I just stayed for like 15 minutes. I didn't eat a lot before, and that is always my bodies reaction to something stressful with no food.

I had some pretty intense cramps the first day and then mild cramps on and off for like 2 weeks. I had a constant light period for like 2-3 months, and now I just don't get a period. I can definitely still tell when my body is ovulating and wanting to have a period. I just get a feeling if that makes any sense.

I've had no issues with my IUD, but my EDS isn't extreme. More like mild to moderate. Overall, I had a positive with my IUD.

[82spoons-deactivated20190331]

“at least you’re not paralyzed”

“at least you don’t live in constant pain and gotta put yourself together like a pop socket every morning carol but thanks for the kind words”

[disabled-astronomer]

Add it to the List

Had a follow up appointment with my allergist about my EoE treatment. I mentioned to him about my EDS diagnosis and he eyed me and my allergy/intolerance list up. He wondered if I had Mast Cell Activation Syndrome which is linked with EDS. He said it was just a simple blood test to see if it's a possibility. Sure, why not.

Blood test comes back with mildly elevated results meaning Mast Cell Activation Syndrome might be a possibility. He gave me a medication to try and tips if I need to take antibiotics in the future as I have several big antibiotics I don't tolerate. Said if I don't see any improvement with the medication, then I probably don't have it since I also don't have extreme symptoms either.

Huh. Another issue to add to the list? Why not. I'm used to it.

[sunflower-cane]

Me:theres no cure to my illness, im trying to come to terms with that.

Abled person: but there must be soemthing!! Have you considered–

Me:

[mothcub]

What’s popping, you ask? Why, it’s my joints.

[disabled-astronomer]

Official Diagnosis

Had my long awaited appointment with a hypermobility/EDS specialist for an official diagnosis. Well, turns out I was right. I have hypermobility type Ehlers Danlos Syndrome. My hips and shoulders are extremely loose (figures). He said I was already doing a wonderful job with my current medical treatments, and he just gave me some changes to prescriptions and had a request for orthotics and a silver ring splint for my thumb.

I'm so happy to finally have a diagnosis for my pain. There is something physical there, something that makes my body the way it is.

Excited to move forward.

[wearingmystripes]

yes, I’m chronically ill

yes, i still go to school and get good grades

and yes, there are chronically ill people who can’t go to school or are always absent

and that’s ok

we are both valid

do not use me as an example to put others down, to say “here is proof that someone with your condition can go to school”

you don’t know who i am and what i have to go through to get myself to class every day

chronic illness affects everyone differently

accept people’s limits

let us advocate for ourselves, after all we know best how we feel

[ging-zebra]

I’m so glad to read this — I still work full time and people act like that means I don’t have a chronic illness when I’m all reality it’s because I can’t pay the bills on disability 👀🤔🦓

[disabled-astronomer]

Preach!!! Describing myself as disabled has been such a internal process because I do go to school, I have two jobs, and I look completely normal, and the societal idea of disabled is soooo narrow.

I just wanna be like, "Yeah, no. My body is in pain all the time, and it hurts really bad, but I got shit to do."

[disabled-astronomer]

Migraine Treatment

I get Botox injections for my migraines. Seems to work well for me. But here's the thing. Botox lasts 10-12 weeks and my treatments barely last 9 weeks.

After a week and a half migraine, few say break and then another one, I got a nerve block in my forehead to see if adding that might help. Seems to have helped? I don't have a migraine today so that is a Plus. The doctor also wants to add more Botox to the back of my head/neck/shoulders. They're hoping I'll get longer relief with more Botox and more treatments.

Who doesn't love more needles in the head.

[disabled-astronomer]

When you pick up two chairs for you band class, and you strain/dislocate your shoulder.

Like... Come on. I play flute. I need that shoulder.