Once again, hope

Yesterday was a good day.

We contacted a lawyer about my disability denial and they said I actually have a good case, though of course that’s pending meeting with them and further review. I have an appointment to meet with them in early January, so I don’t even have to wait that long.

The introductory contact with the lawyer established that my attempt to work earlier this year will likely help me get disability, as it will be seen as a “failed attempt.” In other words, it proves that I tried to work full-time and failed within two months because of my health.

Also possibly in my favor could be the fact that I applied for disability in 2016 and canceled it before a decision could be made. But then in 2017, the total amount that I earned all year was still below the “substantial gainful activity” amount allowable to earn by people receiving disability.

This is me talking, not the lawyer, but I think that could very well establish that when I applied in 2016, I really wasn’t able to work even then. But I still wanted to try and my earnings for last year prove that I couldn’t. I honestly probably should have applied even then and not waited so long.

But here’s the thing: applying for disability has been incredibly difficult for me. I really don’t want it. I want to be able to work full-time. I still want to go back to school and get a graduate degree. Having to prove my case by getting a lawyer involved (and seeing these details that make my case stronger) actually further convinces me that I really need it. And I think that might have been necessary to shake me out of my denial.

I also finally got my long-awaited records from my neurologist (seriously, I had been requesting them for months.) And that was really interesting and enlightening. From the first time I saw him in 2015, he had diagnosed me with cognitive impairment, memory loss and “extensive” white matter disease.

He also diagnosed with me with spastic gait, hyperactive reflexes, and difficulty with sleeping.

Probably most important to my disability case: I was already bad when I first saw him. My memory loss was already bad from day one. It documents that I have gotten worse since then. And even more significant: it also details why I’m not a great candidate for any of the available disease-modifying drugs.

Finding out that a lawyer thinks I likely have a good case legitimizes my struggle. Since they only get paid if I win, they’re not going to take on a client who’s likely to lose.

Seeing my neurologist’s records also legitimizes my struggles in my own eyes. After all, I didn’t know what he would have written down about me in his notes. I didn’t know if he was going to say that I was just making it all up or that I had non-specific complaints.

Keep in mind how difficult it was for me to get diagnosed when I was in Michigan. I did go into my family doctor a couple times a week for a couple months for a headache that wouldn’t go away. At first the doctor said that if he tried everything and nothing worked, he’d send me for an MRI.

But in the end after he did try everything, he tried to just diagnose me with depression, as though my symptoms were psychosomatic. I had to fight to even get him to refer me for the MRI, which showed that I had really extensive brain lesions already.

So you can see why I might have been worried that my neurologist would have just been dismissive of me in the records. But he wasn’t. It shows that he also ruled out a rare disease called CADASIL and later vasculitis of the brain, because my MS was so atypical. Most people with MS don’t have nearly as much white matter loss as I do, and it wasn’t until last year that anything started showing up positive for MS in my spinal fluid.

I know, I’m probably starting to get boring. But I’ve been tested for everything that could possibly mimic MS (including Lyme disease). And it’s “just” MS. I’m okay with that, in a way that I fought for a long time. I’m coming to accept that I actually have it.

Strangely enough, finding out that I may indeed get disability and do indeed have well-documented cognitive dysfunction, memory loss and physical problems makes me feel better. It makes me want to take better care of myself.

If I get disability and it’s no longer in question whether I’m really sick, I don’t have to prove it anymore. I don’t have to beat myself up for not being able to earn enough anymore. Maybe I can get a part-time job in a library once the kids graduate, which wouldn’t cause me to lose my disability and wouldn’t be too taxing on my brain or body. And maybe I wouldn’t be stressed anymore and could just live in peace. That sounds really nice.

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