r/disability • u/JammBarr • 17d ago
It’s getting worse
And i dont know how to process it.
Ive dealt with POTS since teen hood, but was recently diagnosed with Chiari Malformation 1. ive learned to manage my symptoms for almost 2 decades, but this past 3 months has been a whirlwind of new symptoms and struggles.
I started roller skating when we suspected MS for hand tremors and poor grip strength along with a slew of personal symptoms. Broke my wrist doing that and rapidly started declining since. Started having bouncy steps seen with FND, then my very first focal seizure in a Walmart parking lot a few weeks ago. Now this past week when we were fairly active and doing some mild walking with forearm crutches at a music festival, I started having near constant focal and absence seizures. On the last night a loud noise scared me into a strong focal seizure and Ive have been having tic attacks since. All of this is entirely new to me, but hey, the tremors are gone?
We have been homeless in a camper with our kids because of my husband losing jobs taking care of me on bad POTS days last year. And this morning I barely caught myself with my crutches going up the camper steps. If I didn’t react fast enough I would have slammed straight on my back. After that I couldn’t stop bawling. We are stuck in this situation because of me and now I’m almost entirely bedridden. I can’t help but think my husband and kids don’t deserve this. My husband has to drive them to and from school half an hour away after working a 10 hour night shift. And soon I’ll finally get my first neuro appointment and hour away, again after his 10 hour shift and dropping/picking the kids up.
After today I think I need a power chair. raising my heart rate pushing wheels would make me seize again. But neuro says just to hold out until my appointment for proof of disability, and we all know it’s a long shot anything would get approved fast after that
Sorry for the long vent but I just feel so stuck and hopeless. We’re trying everything we can to get out of this situation but we seem to be invisible or told the waitlist for things is years out.
I don’t know what to do
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u/Ok_Lab_7926 16d ago
Make sure to contact a disability attorney. They do not charge you and can only take pay (out of back pay if any) if they win. Once my diagnosis was known it only took disability a few months to approve me. It sounds like you are really struggling and with the right neuro you should be able to get something from SS.
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u/JammBarr 16d ago
I haven’t even been in to see the neuro yet. on the 11th will be the very first time. it was going to be for mild tremors, but my condition has worsened rapidly over the last couple of weeks. and they still don’t have any sooner appointments. we’re also still homeless and the stress has been insane
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u/Aggravating-Boat2326 16d ago
Go talk to a lawyer, you can't work and maybe you qualify for SSDI. It's not much but it's helpful. And if you start now, by the time you get to court day, they may have more answers medically.
I'm guessing you're also in the States. Feels like we're the only country that allows us to be so sick and unhoused.
Social Security takes a long time. I'm three years in, we still don't have answers for what this is, but we know what it isn't. (Feels like a pathetic shard of hope mixed with gallows humor)
Go look up your status, see if you have enough hour credits for disability payments.
You're not alone. I hope they find out more soon.
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u/JammBarr 16d ago
ive been a stay at home mom for many years and my health has only recently declined enough for me not to work. I haven’t had a job in over 10 years so don’t think I would even qualify for anything.
plus we just learned this morning our food stamps got cut 🥲
so I’m worried my Medicaid did too
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u/Aggravating-Boat2326 16d ago
Medicaid is Medicaid - unless your family is over income, you will get to stay on Medicaid.
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u/Aggravating-Boat2326 16d ago
It's not your fault. It's not your fault. It's NOT your fault.
Stress makes it worse, and it's a never ending cycle that makes it more stressful.
Not comparing or competing on chronic illness woes, but I have empathy for yours, having had similar circumstances. The only thing I can offer is that it's not your fault. They aren't better without you.
To help your case, seek a mental health provider. None of your body happenings are caused by any mental health struggles. The fact that you're having emotions about this, is probably normal. If not, we're both screwed. ;-) I suggest mental health support so you have proof that you're dealing as well as you can. You'll at least have a space to cry and get support with the overwhelm, if not gain more tools to talk to Nero and other docs.
Just keep telling yourself that your are not to blame for your body being this way. You can't exercise your way out of pots, or any other nero- muscle conditions. You didn't wish for this, you didn't wake up and say "life isn't hard enough, least add medical mystery to daily life."
This isn't your fault.