Rare diseases awareness month

actipton80

@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.

Nat09

@actipton80 I hope you will be able to find something suitable for you, it’s already difficult these days. Thing are starting to open up again here ( Canada)so more job opportunities 👍🏻 It’s more encouraging with the vaccination that started, brings hope for the future 😃 I’m sure it’s the same for you guys, one day it will be behind us ☺️

In the meantime, keep trying, I really hope you find the job you want and there’s always someone who needs help here in the community, feel free to share your tips with us, take care 😊🐰

iforgotagain

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.

Beth_Mc_Hugh

I have empathy for all of you fighting every day against your rare disease. I have 3 autoimmune diseases. I was diagnosed with Hashimoto's disease at age 11. At 39, Alopecia areata. At 40, Autoimmune Hemolytic anemia, which caused my spleen to triple in size and had to be removed. I'm thankful for everyday to be alive. Thank you all for sharing.

actipton80

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

Hi @iforgotagain warm welcome to our community, we’re happy to have you here. I can understand only some of the things you’re going through, just this morning, I got up , went to the bathroom and while I was sitting there, the rigging in my right ear ( it’s always there)started to get worst and I felt a lot of pressure and pounding and kind of blacked out for a few seconds and when I came too, I could see spots in my vision and knew, this is not good, I have never experience this before and when I read your post, it sounded familiar. I also understand the feeling of not giving up for other’s, it’s so hard some days you can’t help of wanting everything to just stop, it gets difficult and discouraging but take it one day at a time my friend ☺️ one moment at a time if you need to, when the pain gets bad, I try to get my mind to focus on something else, playing candy crush becomes very important then.😅 Have you tried acupuncture? I suffer from widespread neuropathy, every single nerve is attacked, small and big ones and acupuncture helps with the pain 😌 also, a psychologist thought me about mindful meditation, I can’t thank her enough. Sometimes instead of chasing away from the pain, I try to face it and explore it, I force my mind to see what hurts and where. It can only help 🤷🏼‍♀️ I’m sorry that you’re having such a hard time with your dr. Too many don’t want patients like us and with covid, it has changed our health system a lot. You might benefit from seeing a dr. at a pain clinic, seeing one dr. who could prescribe what you need and help control your pain better. They are very good at helping people like us 😉

Take care of yourself, you can always tag me 😊🐰

Nat09

@Beth_Mc_Hugh I hope you’re doing well now, that must have been a terrible experience 😢 getting your spleen out.😣

We do have thyroid issues in my family as well, I have hypothyroidism and my mom and sister are hyper, my sister also have Graves’ disease .

Thanks for sharing your story, take care of yourself 😊🐰

Nat09

It’s the final day of the month, February 28 and it’s Rare Disease Awareness Day. This year, new diseases will be discovered, some people will finally get answers but for others, the fight to find answers continue. We also need to find cures for those illnesses, too many of them have no cures, no treatments, no understanding of what causes these illnesses like mine.☹️ I hope for some answers, beg and plead that one day soon, a cure or even a treatment will come, not for myself, I think I have a lot of permanent damage done to my body that can’t be reversed 🥲 but for my children and their children and my future generation and other’s just like me, waiting and hoping, they won’t have to see their offspring struggle and suffer like we do.😔

Together, let’s spread the word, the hope, the faith, and fight for a better tomorrow. 😍🦓🥰🐰

CassD

@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.

LauraSmith88

Even though it’s now March, I was curious if anyone else had ITP. I was diagnosed in 2012 and have had to do IVF and chemo treatments. It was a rough ride and peticea is always still trying to show its face.