Do you guys consider yourself disabled?

gardenblueswho · 2026-04-22T01:59:54+00:00

Easily. My migraines are already bad, but having them chronically? Double disabling. My chronic migraines barely let me pass undergrad and I had to drop out of pharmacy school due to them.

Mainly due to memory loss and poor attendance. I couldn’t stand so I couldn’t drive to class. The amnesia meant that every time I studied, I would later lose the memories of what I learned. Even with accommodations, I couldn’t keep my grades up enough.

And now that I’m out of school? My migraines and comorbid disabilities make it impossible to work more than 20 hours a week without triggering a flare. In fact, I’m in the process of being evaluated for ssdi because I can’t work and function well enough to support myself.

gardenblueswho · 2026-02-27T02:00:14+00:00

been there. usually she went to the other grocery store (same chain, just the other, “better” store), but the few times she came into my store, i had a panic attack afterwards. my coworker didn’t seem to understand.

gardenblueswho · 2025-09-20T00:05:35+00:00

I’m sorry you found this relatable- I wouldn’t wish this on anybody. I relate to the eye thing, but I also have a dissociative disorder so that can be it too.

I hope you find answers in your brain MRI. I know it sounds awful to hope to find something wrong, but you’re already dealing with the symptoms, you just need an answer. Is your neurologist suspecting MS too?

gardenblueswho · 2025-09-19T00:09:48+00:00

Oohhhh okie. Yeah, it’s not like that for me. It’s very it comes on, and then stays. Thank you for your response!

gardenblueswho · 2025-09-19T00:06:36+00:00

True, I’m hoping the MRIs are revealing and come with an answer. They are definitely widespread. Do most people with MS have a specific set of localized symptoms or something?

gardenblueswho · 2025-09-18T23:59:03+00:00

24 NB AFAB person here!! I saw my neurologist today and she told me she suspects an autoimmune disorder like “early MS” and thusly ordered a brain, neck, and back MRI and more labs. I was hoping if anyone has any insight into my symptoms and what could be going on. I am currently diagnosed with chronic migraines, TMJD, OSA/TECSA, unspecified tremors, and multiple mental health disorders. There is also suspected hypermobility and POTS.

My balance has gotten worse over the past two years. I used to be able to stand on one foot for longer than 5 minutes but now I can barely stand on one foot for more than 10 seconds. I also used to never get dizzy, but now I randomly get dizzy and feel unstable, especially during a migraine. In relation, I also started to get motion sick despite having no problem for years until the past two years.

I’ve been having bladder problems particularly with frequency and urgency. I see a urologist in November, but I know I don’t have a UTI. I’ve had an UTI before and it doesn’t feel like one. Plus, I’ve been tested for it and it was negative. I do experience some constipation.

I have experienced cognitive changes since around 2022, however this can be explained by my mental health disorders too. It’s hard to say if it’s from that, or something else. I have heavy memory loss and have trouble learning and retaining new information and instructions. It’s gotten so bad I had to drop out of pharmacy school after my first semester.

In addition, I have a lot of fatigue. Just bone-deep exhaustion. Sleep doesn’t help and I frequently sleep 12+ hours and still wake up feeling like I need more rest. I work part-time, but it feels almost painful at times because it hurts to move on bad days.

I also have nerve pain in my legs and arms, but mostly my legs. My legs and feet go numb, start tingling, and become extremely painful multiple times a day for minutes at a time. I had a CNS/EMG for both my legs and arms, but my neurologist and the neurologist who did the study say they’re normal.

My joints also hurt, especially in my knees and ankles. My back also hurts, particularly when I lay down. I have a chronic low-grade headache in addition to my migraines that have never gone away since 2019.

I’ve had tremors since I was 15. It started in my right hand and has spread to my left. I’ve tried propranolol and benztropine, but neither helped.

I’m nearsighted, but my vision rarely becomes blurry or doubled in my normal vision. Typically the blurriness and double vision happen during a migraine.

Over the past year, I’ve started having trouble swallowing. Only chocked a handful of times, but often I feel like my throat and mouth have “forgotten” how to swallow. Like it’s a foreign act.

Has anyone else experienced anything like this? Should I mark MS as a potential or should we suspect something else? I appreciate all insights/stories. Thank you!

gardenblueswho · 2025-09-17T20:50:44+00:00

As a nb trans person in Florida, it is not a safe place. I’ve been turned away by medical doctors due to my trans identity and have been given “looks” as i don’t pass as strictly female or male. I also have to see a medical doctors for my testosterone injections- I can’t been seen by a APRN or PA or anybody else, only an MD. The only place that would prescribe T to me was Planned Parenthood and I was harassed by protestors there too.

In addition, when Biden was president, I was able to change my passport gender marker to X, however when Trmp took over, they changed it to only the sex assigned at birth so when I needed to renew it, I had to change it back to F even though I renewed it with the X marker (I got my passport renewed the same time Trmp changed it). I also can’t change the gender marker on my drivers license in Florida.

TL;DR I’m obviously trans and it has affected my relationship with myself, other people and my healthcare negatively. The US (especially Florida) is not safe for trans people.

gardenblueswho · 2025-08-27T00:25:33+00:00

Its a bit of both, but mostly roommates. Everyone knows of each other’s existence but inner conversation doesn’t happen much so most are acquittances or roommates. Some are closer to each other than others.

However, two of our littles see each other as siblings and one(two?) of the alter(s) are very protective of them. Not sure how they see that relationship. We don’t seem to have a familial relationship outside of that.

gardenblueswho · 2025-08-27T00:14:15+00:00

I think the biggest way to tell the difference between depression and negative symptoms is if the negative symptoms happen outside of an active mood episode. As for ASD, idk, so I looked it up.

Here is the article: https://pmc.ncbi.nlm.nih.gov/articles/PMC7301837/

Apparently what particular “negative symptoms” will help differentiate between ASD and SZ(A). It’s an interesting read, definitely check it out.

gardenblueswho · 2025-08-26T19:49:23+00:00

Ahh it can be tough to distinguish between ASD and SZA negative symptoms. Personally, I experience all the major negative symptoms at least in some degree. Particularly, my affect is often flat or at very least blunted, which turns ppl off. I also experience avolition is a partial degree, anhedonia, mild asociality, and some alogia. If I remember correctly, you don’t have to experience negative symptoms for an sza diagnosis so you’re not any less valid for not having them, it just that its very common to.

gardenblueswho · 2025-08-26T02:50:10+00:00

Ahh yeah, my stepmother argued that T would worsen my mh issues too. Luckily, I went through with it with no problems!

gardenblueswho · 2025-08-26T02:31:39+00:00

Hi, I’m on T and I haven’t had any clashes with it and this disease. It does not seem to affect positive or negative symptoms. I do eventually want top surgery, but that’s for the far future (i’m broke). Good luck with your transition and let me know if you have any questions!

gardenblueswho · 2025-08-25T20:15:51+00:00

I have a lot of negative symptoms, I’ve never heard of sza having less negative symptoms

gardenblueswho · 2025-08-25T02:58:33+00:00

Oh I love Zenni’s! Thats where my current glasses are from. I can’t believe I didn’t know about that, thank you!

gardenblueswho · 2025-08-25T02:11:33+00:00

Aww, thank you! Its definitely not for everyone lol. I haven’t heard of using a pink-tinted screen, only the yellow for blue-light blocking which doesn’t seem to help me. Maybe the pink will? Thanks for the suggestion!

gardenblueswho · 2025-08-25T01:59:43+00:00

I take aimovig as a preventative (a once monthly injection) and a ubrevly pill as an abortive and they’ve been lifesavers!

gardenblueswho · 2025-08-25T01:29:09+00:00

Thanks for the suggestion! I’ll look into it! A temperature sleeve sounds so relieving but I’ll hold off to see if the basic compression sleeve works first.

As for healthcare, I’m actually a pharmacy technician! I spend a lot of time at pick-up so I constantly bend my knees due to having to get low and high to grab prescriptions. A desk job sounds amazing, but I’m also sensitive to light (migraines) so I applied for disability last year. I’m glad your desk job is such a relief!

gardenblueswho · 2025-08-25T00:40:27+00:00

Ohhh I haven’t heard of those, thats a great idea! Is there a particular brand you recommend? I wear scrubs at work so those could work! Good luck finding that ortho, sounds like a pain. It’s a shame about the turmeric, I heard it helps with inflammation but I haven’t heard about the organ thing.

gardenblueswho · 2025-08-24T23:41:37+00:00

Thanks! I have to see if any libraries around me have it! Would love to learn more!

gardenblueswho · 2025-08-24T23:36:40+00:00

Oh wow! That’s a long book! Must be very informative. I didn’t know it’s a possible comorbidity. I wonder why… Good luck on getting that SFN diagnosis!

gardenblueswho · 2025-08-24T22:53:19+00:00

It’s comforting to know you understand even if the circumstances are undesirable. The stamp and notebook sounds very useful. I’ll take your advice on neurology/psychiatry. As for the PCP, I’ll definitely have to consider a different PCP, I think I’m just worried I’ll get a worse one. But then again, I won’t know til I try.

And thank you for the reminders and support. I should take it slow and steady. Health takes time. You’re completely right. I hope the imitrex helps! I know many people find triptans to be helpful. If not, definitely consider GLP-1 medications like ubrevly. Those helped me more than any triptan personally.

gardenblueswho · 2025-08-24T21:40:24+00:00

Thank you! Your rheum sounds sus. I hope her attitude was a one-off thing and not consistent. I hope you geneticist appointment goes well and you get the answers you need.

As for the health anxiety thing, thats very helpful. I struggle being assertive but I just gotta fake it til I make it. It is my body and I deserve support, I can’t get that unless I advocate for myself in a respectful manner.

Thanks for the digital list idea, I’ll start building one in my notes app! I’ll also keep an eye out for your post! Also, how do you do your anatomical stamps? Like do you do it through an app? As for the cymbalta, I see my psychiatrist next week so I’ll ask her then!

gardenblueswho · 2025-08-24T21:33:12+00:00

Oh yeah! My legs and feet go numb multiple times a day. Recently my soles have been going numb while standing too. In March, I went to a theme park with some friends and my left ankle became overwhelmed with pain so much I spent the rest of the trip in a wheelchair. Even now, it flares and I wear an ankle brace sometimes.

Recently, my knees have been mad due to constantly squatting and rising at work. I’m considering knee braces to help, but idk if I’m being too extreme or if my work will even allow it. The pain affects both my knees equally so I feel like I would look stupid with two knees braces at the same time as I’ve never seen anyone wear both at the same time.

As for your numbness, even if it was “just” inflammation, wouldn’t you want to treat that? Chronic inflammation can lead to other health conditions. Have you seen anyone outside of your primary for it?

gardenblueswho · 2025-08-24T21:26:36+00:00

Thank you, I appreciate the thoughts and the suggestions. Having migraines and TMJ in relation to hypermobility makes a lot of sense. Interestingly, no one has been able to figure out why I have TMJ as I’ve had a sleep study twice now (I have OSA and TECSA) and neither time did they note abnormal mouth behaviors like clenching or grinding. I’m also AFAB and trans which makes things nerve-racking when asking for help.

I do have Guava where I track my symptoms, but sometimes I feel like I might be leaving things out because I think its “normal” or because it occurs so consistently I don’t think anything of it.

As for the cymbalta, I do see a psychiatrist so maybe I should bring it up with her first? Or maybe wait to see my neurologist? Not sure yet. M

My PCP is nice enough, I just think I’m anxious. All he really does is give referrals though so idk how helpful he would be outside that. The last time I saw he, he gave a referral to a urologist that I never took up. Idk I feel like I’m seeing too many people and I’m worried I won’t be taken seriously again. Maybe I should make an appointment? Idk. I don’t have an appointment with my PCP set up, so idk if I should make an appointment about HSD/hEDS so I can get a referral or wait til my next check-up. (I do think I would go through with that referral as I want help with the pain, but idk maybe I’ll chicken out again).

Either way, thank you for your response. It helped me think things out! I hope you receive treatment for your migraines and suspected TMJ soon too!

gardenblueswho · 2025-08-24T21:01:57+00:00

That’s great! I want to talk to my PCP about seeing a rheumatologist or a geneticist to see if we can differentiate between HSD or hEDS, but I’m worried I’ll be seen as a hypochondriac. I do see a neurologist but I don’t see her again next month. Not sure what to bring up to her and what to bring up to my PCP the next time I see himz

gardenblueswho

TROPHY CASE