Its taking all of me

But I would like to be as transparent as I can

in this blog. My disability hearing is in March.

This isn't my first hearing; it's my third, my second with a lawyer. I have full confidence in the law firm I went with because they are, by far, the best in the state. What I do not have confidence in is the judge believing I have conditions that are all invisible, when people who have missing limbs are required to go back to prove their limbs have not grown back once a year.

I have all the testimony from my doctors, my friends, my husband, my parents, the people who spend the most time with me. And I am still drowning in doubt.

My lawyer said we are running out of work credits, and I am not sure what that means exactly, but I am assuming I won't be able to fight this in court much longer. Knowing working will kill me, there's nothing I can do about it.

Do you know how scary that is? Thinking about it? It's like screaming underwater; you are loud, but not one single person seems to hear you.

So with all that being said, the NYS Disability system is effed, for lack of better words. I can't speak for all states and if they all run the same. You have stage 4 cancer patients dying fighting for disability; who's to say they will give it to me? The 41-year-old who is obviously overweight even though she's lost 100 lbs without explanation, who has 3 kids, and a husband, who seems to live a normal life.

But the truth is I do not live a normal life. On the outside, I look fine, but I have a hard time learning to pace. I like to get everything done at once, so I too often fall into flare-ups. They don't see me bedridden with one. They do not see me getting sick all year round with the rarest viruses out there. (Isn't it weird to get COVID and Norovirus at the same exact time?) They don't see me hyperventilating because breathing is so tasking for me. They don't see me having to end a day out hours early because I got too tired from walking. They don't see me searching online for wheelchairs. They don't feel my insides when they are tearing up, tightening up, or failing in general. They don't see me almost passing out due to low blood pressure. You know who does? My friends, my family, my doctors. And I think it's absolute crap that I cannot use any of them to testify for me.