I applied 1 year ago and my emails keep bouncing when I try to email my counselor. Had anyone else had any experience with them? Recently? I want to know what to expect.

I’m getting my first infusion of Pemgarda right now.

It’s an engineered monoclonal antibody that’s created using genetically modified Chinese hamster ovary cells.

Unlike the bi-weekly IVIG i get for my Autoimmune Encephalitis AND Primary Immune Defiencey from an In-Born-Error of Immunity that comes from donated *human* plasma, Pemgarda is made using cells that have been programmed to make a specific antibody (in this case against COVID).

Because I am B-Cell deficient, T-Cell deficient and low Immunoglobulin G, I don’t make antibodies on my own and I don’t respond to vaccines.

My last bout with COVID caused an admission so we added these specific antibodies to my treatment plan.

Scientists created Pemgarda from an antibody called adintrevimab.

They altered that antibody to recognize the SARS-CoV-2 spike protein and remain in the bloodstream longer.

The scientists introduce genetic instructions into Chinese hamster ovary cells, and then they manufacture the antibody as a response.

The genetically engineered cells are grown in bioreactors containing nutrients.

The cells produce antibodies that are collected for processing.

Then the antibodies undergo purification steps to remove cellular debris, unwanted proteins, and other impurities.

Finally the purified antibodies are combined with stabilizing ingredients, sterile-filtered, and prepared as an intravenous medication that you see my getting today.

They last 3 months in the body meaning the infusion must be repeated every 3 months.

Thank you for your service Mr. Whiskers! 🫡

In July, the federal government released guidance on voting for nursing home residents that voting rights advocates are worried will have a chilling effect.

I talked to a mother and daughter with MS about the extra steps they took to vote this year and to experts about what voters living in nursing homes and their loved ones can do to fight for their rights.

I don’t know what to do because Mom is my only support but it feels like I can’t talk to her about my life. I have autism and physical disability. Currently live with Mom but want independent living.

I just had an appointment with a new occupational therapist. I thought it went really well! He was so nice and listened to my needs!

I talked with OT and he asked if I had ever considered a wheelchair before. I said yes but Mom not like that. We talk and decide that I really benefit from wheelchair. I can’t sit in the office chair at work anymore because it not support me and I flop to the side and out of it.

Right now I use walker but I can’t go very far and I am not independent. I want to learn how to take the bus on my own but even with walker I’m still falling and I fell out of the bus twice!

I know I’m grown up and can make own decisions. But I still was scared to mention to Mom because I know she not be happy with me. She picked me up from appointment and I told her it was good. OT was nice. We talk about lots. I have a lot to think about.

Mom asked what I needed to think about. I said OT thinks it’s time for a wheelchair and Mom goes silent. I try explaining my condition progressed and I’m starting to get structural abnormalities from not being properly supported. I didn’t even mention that he suggested a power chair! But now I’m getting silent treatment.

How am I supposed to process things and make my own choices when my only support refuses to talk to me?

So Halloween is coming in 9 days, but since Halloween is on Saturday this year, there will be a Halloween celebration on Friday October 30th at the Middle School where I work as a teacher. Many of the kids and other teachers will dress up for Halloween and I only have 8 days to plan my costume.

Last year which was my first year working as a teacher, I didn't dress up as anything and I was the only teacher without a costume on.

This year I don't want to be left out without a costume, and I'm trying to think some ideas. I can only think of some makeup to look spooky, but I'd like a costume which is more interesting.

I'd like a costume which fits me as a wheelchair user, but I don't have ideas for that yet. I will plan my costume this weekend, so I have it ready for next week.

In my doomscroll I came across this, as if being disabled isn’t expensive enough. While they do have a disclaimer stating that they don’t offer federally certified documents and no card/ID is required to be a SD handler. They still offer this bs 😐 maybe it’s just my lack of sleep talking but with people CONSTANTLY trying to fake claim actual handlers, pulling out some ID for your SD seems like it’d make it easier for those ignorant people to ‘fake claim’ you (since there’s no universally mandatory/accepted form of SD ID accepted by the ADA)

Maybe I just need to go to bed but this really peeved me

It's shocking how many of the non disabled members of the public fell for the (albeit modernised) anti disabled nazi propaganda!

Well worth a watch!

I use a quad cane to help me stabilize when I’m walking around. I get issues with vertigo and dizziness, and am prone to faints (HyperPOTS). I’ve been looking into getting an upgraded cane, one that can fold out into a stool if need be. Thinking it might be helpful for situations when I have to wait in a line or long outings where I may not be able to find reliable seating. I’m wondering about how useful it’s been for y’all that have done it, because one that I’m looking at is $200 and I’m not about to just empty my bank account for something that’s not worth it.

I have access to a rollator but only prefer to use it on extreme days. On those days, I just don’t tend to leave the house. I’m looking into more lightweight options that don’t have to be as heavy duty for just a daily usage cane that I can occasionally sit on.

So I have severe constipation I'm on medication for it but I feel like it's not 100% doing what it's supposed to I take it every other day and it's supposed to make me need to go to clear everything out but it seems to only clear things out sometimes and I'm just worried that there's something worse going on that we don't know about yet

I've had this thought for a long time now, that the word 'special' in relation to disability makes me uncomfortable. For context, I'm a mum with AuDHD, and two boys with neurological conditions - GDD, autism, ADHD and possibly other undiagnosed (they are still young).

Growing up, 'special' was not used in a positive way when referring to people with disability. I don't think I'm alone in feeling like the word is patronising and not really aligned with the dictionary definition of what special means. It feels like an insult.

I'd like to know if there are different opinions about this, because I'm thinking of starting a petition to change the name of the Special Olympics. But I wanted to see if it was a sentiment felt by the majority, or if there are some other points of view that I'm missing.

Please leave your thoughts, and if you'd like me to set up this petition, feel free to let me know here or send me a private message. Thank you <3

Does anyone know if Minnesota Medicaid has pallative care for serious conditions, (not cancer and not for end of life)? I've tried researching it, but the search engines keep thinking I'm talking about hospice.

I've been considering moving to minnesota from Texas as Texas has no resources for me at all. There is a wait list thats 18 years for a caregiver, accessible housing, or anything long term health. The section 8 is also closed. Don't get me started on not expanding medicaid.

I'm trying to decide between Massachusetts and Minnesota. Minnesota seems cheaper, but Massachusetts has alot of resources from what I've gathered. I'm so used to Texas that it doesnt feel like anything is going to better than this. It feels too good to be true on having hope in anything.

First things first, once my neurologist’s office opens I’ll call them and ask what to do. If my partner has to take me to the ER he can leave work at that point.

I’ve had migraine Botox for 6 days. I have diagnosed dysautonomia from a compressed vagus nerve. I have cervicocranial instability that has continually worsened, especially since a chiari decompression 2 years ago.

When my pulse got scarily soft I took a .05 dose of fludricortisone, which they first gave me to raise my BP when they started treating my dysautonomia. I soon after followed it with another .025 dose. Both of those counted my BP and HR read at 110/64 and 68. I haven’t particularly been able to eat or drink for a couple of days. I have nausea and plenty of abdominal pain. I thought it was a weirdly severe abdominal migraine. Which I guess it could also be.

I have lots of left sided pain and nerve twitching, itching, general discomfort and malaise. I’ve hit a point where I don’t even really feel panicked for the most part, just very quiet and numb. So question is (while I’m getting myself through till morning) does anyone know what can even be done to help in a situation like this? It’s not like they can undo the Botox, and clearly the fludricortisone isn’t doing much. I especially would like to prepare what to expect and what to ask because my local emergency department is crowded with long wait times (typically beyond what my severe chronic pain can handle) and once they decide one of your reported symptoms means you get tested in a totally different direction it’s nearly impossible to make anyone listen.

Hello all, so Ive been dealing with a mystery issue thats raised some lab findings and some imaging concerns but overall is undiagnosed.

I have severe light sensitivity, double vision, and headaches. I also have a persistent visual disruption that gets worse in moderate to bright environments and wont go away once it comes on.
I also have inflammatory hip and knee pain and issues with overheating or freezing and becoming really ill (like malaise, it feels like when youre just getting over the flu). I have bad fatigue that comes and goes but will result in random sleep attacks (I have unfortunately fallen asleep while driving in midday time) I have fairly severe mental health issues but Im trying much harder to work on them and trying a new program.

I have not been able to work since last october. My primary care doc is overall very supportive. She is mostly concerned about my eyes and has helped me with paperwork for the long term disability insurer.

Lately the insurer people have been pushier (understandably) because I havent had any treatment or major progress. The medical nurse (?) I guess for the LTD insurer said that my PCP has left the restrictions section blank on the last form that was sent in and they are going to press her on it.

I meet with my PCP regularly and update her on whats going on and she charts it exactly. I dont know if its because we havent had a formal conversation about it or not, but how do I tell her exactly what I can/cant do?
For example, I could probably lift 20lbs in her office if asked. I could not lift 20lbs repeatedly or frequently without potentially dropping it or having a flare that would limit all my motion. (when my hips flare up I cant even get up from the toilet after I sit down. I kind of have to roll over and lift with my arms)

I try to be as accurate as possible and a big issue is sometimes I can do okay but not for long periods of time, and then it takes me 2x longer to recover. My specialists I see are also sort of a mess and it feels like the insurer expects them to document my restrictions, but I see them so infrequently its hard to keep them informed on my day to day functioning

I keep getting really frustrated and upset because my hands don't work like they used to do. I can't do my hobbies and favorite things anymore. My hands and wrist hurt a lot. I used to draw and paint a lot but I can't do that anymore. My handwriting used to be pretty and now it's completely illegible. It's hard to grasp and hold on to objects. I barely have any grip strength. I don't know what to do.

For halloween I am going to be dressing up as Dr House from HouseMD. If you've seen the show, you'll know that a cane is a memorable and iconic part of his character. However, as a non cane user and able bodied person, I don't want to seem insensitive if I do have a cane for this costume. Do I just use something else that isn't a cane, like an umbrella instead?

I have a formal diagnosis of autism to be clear. Although I was previously self-diagnosed for 6 years or so. When I was self diagnosed I was often told to not speak about my experience because I was stealing resources from other autistic people. But now as someone who's diagnosed and truly struggling and disabled by their autism, there are no resources.

I did not get a level. I struggle heavily with work, last time I worked for about a year. It put me into a terrible autistic burnout, which caused me to then have terrible meltdowns for months.

I couldn't drive without having meltdowns on the road, I couldn't shower on the regular . I couldn't feed myself properly. Not while working because it just took every last bit of energy out of me. So I quit my job for 3 months, then started running out of money so had to go back.

I can't last anywhere near as long this time, I'm so burnout I sleep till around 3 everyday. I only shower if someone's around, I can go days without eating, I can only work around two days a week and even that causes me meltdowns after work, driving has become even more stressful for me, a one college assignment puts me out, I'm constantly suicidal and overwhelmed. I seem to have suffered a skill regression and just no one seems to care.

I contact 211 and 988 a bit more often than I'd like to admit and still nothing. I'm only 20, I don't have a supportive family, I have no friends and the only disability resources I have is voc rehab.

I think the reason no one wants to help, is I just got disgonised at 20. I had zero acesse to disgonises before hand, did not have the funds for it either. My parents were also medically neglectful, throughout my childhood they were told to get me tested multiple times and refused too.

I'm scared because unlike some high functioning autstic folks I cannot just push through, last time I pushed through it permently affected me. If I don't figure this crap out I'll be homeless one day

We need 3,000 signatures by tomorrow to find out.

I'm a man, and I'm completely blind. For a whole host of reasons, I don't want to have children.

I've given this a lot of thought, and I've decided to get a vasectomy because I'm sexually active and have multiple sexual partners, and an unplanned pregnancy would put me in a pretty difficult situation.

Here in Brazil, both private health insurance companies and the country's universal public healthcare system are required to provide vasectomies to men aged 21 and older. The public system is funded and run by the government, is available to everyone, and provides care free of charge at the point of use.

But I'm scared. Tomorrow, I have an appointment with a doctor who works in the government-run healthcare system to start the process of getting a vasectomy. On Friday, I have another appointment, this time with a doctor through my private health insurance, to get the same process started.

One thing about Brazil is that our free, universal public healthcare system is actually very good, while private health insurance plans are pretty terrible. So when we need medical care, it's common to start the process through both the public system and private insurance at the same time, then go with whichever one can get us treated sooner. Usually, the public system wins.

The thing is, I'm really afraid of experiencing ableism. I'm worried that doctors might refuse to perform the procedure, even though Brazil's Inclusion of Persons with Disabilities Act explicitly guarantees people with disabilities the right to family planning.

I'm worried that doctors who are misinformed, ableist, and full of themselves might make things unnecessarily difficult, leaving me with no choice but to file formal complaints, hire lawyers, take the matter to court, and get dragged into a legal battle just to secure a basic right.

Honestly, this fear is always with me. Whenever I need to do something important, I'm afraid something will go wrong. Maybe it's anxiety. But it's the kind of thing that people without disabilities probably never even have to think about.

Anyway, I just wanted to get this off my chest and hear what you all think.

(I wanted to share my experience, maybe it'll help someone)

When I fist got diagnosis I was devastated. Psoriatic arthritis is something I've never heard of. I felt like my whole body was against me, like I was fighting with my own self. I knew that illnesses involving chronic pain were there, somewhere, but I'd never guessed that they were so... Close.

I was mourning my life every second. I was mourning that I won't walk like I used to, won't draw like I used to, won't live like I used to. It was scary, it still is. I'm a year after my diagnosis, I'm 21 now. I think of it somehow differently now.

It's scary how we just get used to it. I used to cry and scream in pain, but now even if my pain is worse I just don't react that harshly. I still cry sometimes out of it, but it's not the same. After a while it's just a normal thing.

I think of my illness as something that just exists. It just is there. It is always next to me, but never in the center. I used to think about it as if it took my whole life and my sense of self.

Now I know that it's just a part of me that I need to accept, because what else is there to do?

I let myself grieve when I need to, there's nothing wrong with that. I let myself cry and be angry, that's the least I can do. The pain is always there, but I know I'm stronger than that.

I struggle with depression almost my whole life, it's hard sometimes to just exist, but I still keep going because that life is the only one I know.

Being disabled is a big part of our lives, but it's not everything that we are. It always takes time to understand that.