Autumn_and_their_illness
Autumn_and_their_illness@disabled.social
<p>They/them please 🙏</p><p>👩🦽 Complex case vs. medical gaslighting and toxic positivity. ✨</p><p>I basically have medical diagnosis ✨️soup✨️ too many to list here, and also too many for most Dr's to want to even read my chart enough to understand me well enough to treat me 😵💫😵💫😵💫</p><p>Finally getting help after a month in rehab following a 5 day admission after a diagnoses of severe FND on the nuerotrauma ward in my local hospital . Doctors usually want to throw in the towel, but I’m still here. 😊</p>
Posts
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Post #2983381
Vent session incoming! I want to know, what are people &quot;actually&quot; looking for in the physical/esthetic appearance of someone who is disabled/chronically ill? Feels like there are no right answers to this 🙄 Dress in yoga pants and a T shirt, and you will be met with classist assumptions that you are low income and &quot;seeking&quot; unneeded pain meds. BUT if you care about your appearance and have style suddenly &quot;you cant possibly be sick&quot; &...
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Post #2983380
Just got discharged after 21 days in the hospital 😭😭 it feels so surreal!!
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Post #2983379
As a child, i was severely medically neglected. I was diagnosed with severe congenital hip dysplasia at one hour old, and prescribed a pavlik harness for 6 months to correct it. This usually completely resolves most cases of it. The picture attached are all of my skeletal issues, which previously made no sense why I have so many. Until I learned my parents did not use actually use my brace. Ill be in a wheelchair for life &amp; my parents spin themselves as the victim
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Post #2983378
How do you cope with loss of agency as a disabled person and people who assume nothing you say is credible due to short term memory issues? It&#39;s so depressing :(
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Post #2983377
Was diagnosed FND 2 months ago. Everyday symtpoms getting worse. Labs not normal anymore. Eyes are visible different. Met with neuro ophthalmologist who says definitely not FND, believes majority of symptoms are &quot;organic&quot;.. have referrals to genetics to test for mitochondrial encephalitis, neuroimmune to check for autoimmune encephalitis, and infectious disease specialist... so scared right now andblost. Had to hire private advocate. Please reach out, I so lonely...
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Post #2983376
Happy mothers day to all the disabled moms.. what a difference 6 years can make. It can be hard as disabled mom to not feel guilty about effect of our illness on our kids. If it helps, my 12 year old tells me everyday he would never pick a different mom and hes glad every day that I am his If you feeling not enough, know that you are ❤️
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Post #2983375
Ive shared a bit about my journey towards diagnoses of my sudden onset severe neuro issues and am happy to report we FINALLY actually found the cause! 1st misdiagnoses: migraines 2nd: FND 3rd: &quot;possibly neuroimmune?&quot; 4th: ✨️being insane✨️ Final, accurate diagnoses after I almost lost my life in my living room: CVST. i had a CVST 13 months ago too and you are more likely to have another if you have before. they didnt look into my imaging that showed it this time, said &...
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Post #1316724
First post, just joined! Currently in rehabilitation after a diagnoses of severe Functional Nuerological Disorder and after Finally getting the real help I need, im ready to try to isolate less :( I have &quot;diagnoses soup&quot; (meaning, im a complex case with over 20 diagnoses listed on my chart) so its been so hard to actually get help... Its hard to have in real life &quot;able bodied&quot; friends when my Functional tics have completely removed my filter 🤐🤐🤐