...See more
Hello all, I figured I'd post my disability story. It's a lot to take in and I thank you and salute you in advance if you make it through the whole thing!
I have scoliosis, I had rod placement at 15 years old when I was also diagnosed with osteoarthritis. 3 years later a lump formed on my incision that grew and eventually drained, they cultured the site and took blood tests and found nothing. After 2 years of waterproof bandaids and seeing multiple specialists, I finally had exploratory surgery and the rods were removed. I had anemia in the hospital and almost died. I was treated for osteomyelitis even though the bacteria found in my spine was not mrsa, it was corynebacterium. I had a PICC line at home for 6 weeks after surgery that administered vancomycin. I developed red man syndrome- a hyper sensitivity to the antibiotic. My curve has slowly progressed since the rod removal, I believe it is around 34 now and I also have a leg descrepancy, rib hump, skapular diskenesis and cervical neck straightening. I've had various skin infections including staph, mrsa, corynebacterium and lymphangitis, I was told this could possibly be caused by folliculitis. I had multiple incision and drainages that I have to pack and unpack with gauze. I get panic attacks now with that. I have polymorphic light eruption which is a hyper sensitivity to the sun's uvb ray's. I have oral allergy syndrome which is a sensitivity to raw fruits and veggies. Throughout the years by trial and error I learned that I am allergic to morphine, stitches and sulfa antibiotics. I had a skin prick test which showed allergies to cats, dogs, horses, rabbits, dust, dust mites, grass, hay, pollen, kiwi, oranges and more. I have pcos and adenomyosis, I've had multiple cyst ruptures and two miscarriages. My period lasts up to 47 days if I don't take birth control pills. I have gastroparesis which is gastric mobility, I fear I may end up needing a colostomy bag and/or feeding tube. I've had extremely rare ganglioneuroma polyps removed during colonoscopy, "the kind they write papers about" -my GI. I've had pre cancerous cells removed where at the site I developed an infection. I have seborrheic dermatitis so severe that I've lost half of my hair two seperate times because of it. After two sleep studies and an mslt I was diagnosed with idiopathic hypersomnia. I sleep anywhere from 12 to 16 hours in a 24 hour period. I have rem sleep behavior disorder where I act out my dreams, thrash, kick and talk. I have tonsillar ectopia. A tilt table was done and diagnosed postural orthostatic tachycardia. After memory loss and increasing confusion I had an MRI and two spinal taps where I was told I had multiple sclerosis. I injected myself 3x per week with an immune system modulator. I did this for 6 months. I saw a new doctor, an MS specialist. She ordered another MRI to monitor my progress. She then informed me that the lesions were either from head trauma or headaches (I get ice pick headaches). So I was misdiagnosed. I've also been misdiagnosed with fibromyalgia, had false positives for von willebrand's, a shadow in my heart, seizures and more. I also have anxiety, depression and PTSD.
I was found disabled in 2013. I'm now 33 years old and avoiding Doctors offices. 😂 I quit drinking alcohol and taking most meds after the Ms misdiagnoses, a little over a year ago. I also started doing yoga when possible. It helps with my coping abilities as well as digestion and feeling that I have some sort of control over my body. I'm feeling much better as long as I don't focus on everything at once. I have been feeling extra lethargic lately though so this has caused increased depression and a feeling of disconnectedness so I'm forcing myself to communicate here. I don't have support with my family. I get weird comments like "well how is coming over and just talking going to make you more tired?" Or "why would you explain your hair is falling out if you're wearing a scarf, just dont say anything at all". I want to send the spoon theory video to them but haven't worked up the guts to do it yet. I feel like a burden and a waste of a life. Not always and not as much as i used to.. but often.
I really appreciate you reading if you've gotten this far! Thank you so much! I hope everyone is as well as can be. And I hope I did this posting thing right. 😊