Rare diseases awareness month

@Nat09 I'm in North Carolina. I've been doing research on companies in my area, and there are some in my town that are disability-friendly. Unfortunately, I don't qualify for a lot of the most helpful services due to my IQ being too high. There is lady my mom is friends with who is an autism advocate who might be able to help me get appropriate help to find a job. Most of the services here that help disabled people find jobs don't know what to do with a disabled person who is intelligent, educated, or in my case, both.

I've been playing lots of Candy Crush Friends, and I am always happy to give tips to people who are new to the game.

I also have a few rare diseases. I don't remember what it felt like to NOT be in pain. From elementary school to high school, no one could find out why. My bones break easily also. The pain was "diagnosed" as psoriatic arthritis, rheumatoid arthritis, and osteoarthritis at 15 ang so everything was immediately lumped in to that. I also have terrible stomach problems that couldn't be explained. Many years later, ibd and gastroparesis. Followed by Reynauds, Sjogren's, POTS... the list goes on. One year ago on new years eve, i twisted my knee. I toughed it out until i couldn't walk (12 days! ) because I'm used to pain and i assumed it was the psoriatic arthritis because within 12 hours, the other leg began to hurt and was spreading. It's happened before and left me in a bad state. I twisted my ankle and within a day, i couldn't move. So i went to the doctor who helped me before and they were trying and trying to xray my knees but my legs wouldn't go where they needed to. But when i got to the room and the dr came in, he asked why i waited so long to come in. I told him about my knee and he said it was the least of my worries because my hips were so bad. He said in the 35 years he's been a dr, he had never seen anyone that could stand at least a little (i could take a couple of steps with support and he saw me getting up for xrays) and there was no way i could wait to have a double hip replacement or I'd never be able to walk again. I was appealing Medicaid's decision to cancel my coverage because i made $0.07 too much even though my only income was disability since 18yrs old, and i couldn't afford the surgery. The dr said it was a painful surgery, worse than the ones on my ankles and wrist, but if i wanted it and would try my best, he would cover it himself! I couldn't believe it! I was scheduled for pre-op work up and they were going to call for the date, then everything stopped because of Covid. I was not allowed physical therapy because he felt it was too dangerous. So i finally got the call in October and was surprised to see a different dr. Mine was sick and they were going to operate together anyway, so i needed to meet him. Unfortunately, the long wait took its toll. I was/ am completely dependent on my 72yr old dad. Completely. I can't even lift my legs onto the bed! So other dr ordered preop and because i lost 71 lbs in a month (without changing diet and confined to chair and bed) , i had to see several specilists first. He said i'd get relief from mri guided injections in the joint, so even though needles are one of my biggest fears, i made the appt as soon as possible. When i went to get it, the dr had to stop because the bones were so tightly together that he couldn't get the needle in the joint. The needle actually bent! He gave me a picture of it. So i saw the drs i needed and did labs and was cleared. In the meantime, i Googled the new dr and learned his specialty is OUTPATIENT HIP REPLACEMENT and it terrified me. My next appointment was awful. The office got a call while i was there and my dr of 35yrs- i was his very first patient and i loved him- just died from covid. The dr said i was going to be scheduled for outpatient surgery and i tried to make him understand that i harbor NO illusions about myself and i need to be in a temporary physical therapy after and if i fell or anything at home, dad couldn't help me. Didn't change his mind so i scheduled that surgery. 3 days before it, i got the call that hospitals and covid stopped me again. Now it's been over a year and i can't even hold my head up. Too weak. He reduced my pain meds to 11.1% of what I've been on for the last 20something yrs and i lost what little quality of life i had. Every night i tell Dad i can't take it anymore, and im serious. I always thought people who said that were begging for attention. Im not. My hair is almost gone from not being able to eat properly. I hurt so much! My psoriasis flared up bad. I found out i have a rare subtype of a subtype of psoriasis that is actually potentially fatal. Who ever knew that My teeth had to be pulled from all the throwing up,and now the dentures broke. I can't afford more. I keep having this weird thing happen when i sit up where my head starts to get cold and sweat and my hearing is just a roar and a white sparkle washesvaway my vision and i can't do or say anything. It doesn't last long, but it's scary. A few times, i could see dad's body but not his face. I tried to get in to see neurologist but need referral. Can't get one. My primary care dr also got covid but survived, but after 3 weeks on a vent she lost alot and retired with a whole week notice! My rheumatologist retired and set an appointment with a new one but it was a 6 month wait, so i tried to find another. In less than 2years, 5 doctors either retired or not a good fit, as in telling me they looked at my labs and was negative for certain markers.-which it is documented in my records for many years that i am seronegative. Xrays would show them. Or an exam. But i was told i was looking for attention and pills. Even though i didn't asfor pain meds. An NSAID will tear my stomach up but helps inflammation, and i was on a biologic that helped my skin, stomach, and arthritis but the dr retired so i had to ask a new one. But i can't find a rheumatologist! I finally found one that examines me and he ran tests and found out i have lupus too, but 2 appointments later, his office called and said he quit and it will be 3 or 4 months to see the replacement dr. So I'm screwed. And i want to stop feeling this way. I'm a happy person and I'm miserable. I have no life. The ONLY reason i am not dead is because it would kill my dad. I just can't take much more. I'm now 6 days from my last fever from a month of Covid. I'm even weaker than before. So i spend my time playing games. It distracts me and i can escape for a while.

I'm sorry i wrote so much.

Autism isn't rare now, but it was when I was diagnosed. When I was diagnosed, it was 1 in 10,000. 80% of those were intellectually handicapped as well as autistic, and there were four times as many boys diagnosed with it as girls. They still don't really know what to do with those of us who are not intellectually handicapped, especially if we have other disabilities that limit mobility or ability to tolerate full time work. Then there is my chronic pain and fatigue that still haven't been diagnosed. I have elevated inflammation markers, but there are any number of things that can cause that. All my other blood work is normal. (CBC, thyroid, metabolic panel, etc.)

@Nat09

Like you, I pray that more cures will be found in the coming year. Thank you to all of those who shared. I'm sure some will have realised for the first time that they are not alone in this wonderful community. Others may well have realised for the first time just how blessed they are.