Sometimes, it’s a struggle

On Tuesday I will officially be admitting that I am disabled. But I still refuse to believe it.

Excuse me while I share a moment of weakness.

For me, this has been the hardest part of having MS. I don’t look disabled, and I certainly don’t act disabled. But according to the world- or at least my school- I am disabled.

Before I was sick I didn’t often ask for help. I’ve now found myself asking for it more often than I am comfortable with. I hate asking for help. I hate admitting that I need help.

On Tuesday I will be going to the disability resource center on campus to have it permanently on file that I have a disability. It’s not that I need anything from them, but it is just in case.

You see, two weeks ago I was in the hospital again. My neurologist is calling what happened a “neurological event,” but it’s things like this that really get in the way of my life. In short, what happened was that I went blind in my left eye (my bad eye) and then my entire mouth was tingly and numb- including my teeth, which sounds SO weird. Apparently, I’m supposed to ignore these events (because THAT will be easy).

As a result of the 16 hours I spent in the hospital that night, I missed work, I missed an appointment I was supposed to have that morning and I’ve missed school twice so far due to follow-ups. This is the kind of thing where I need someone behind me to say, ‘yes, this was a legitimate reason to miss’- teacher’s aren’t always understanding (mine have been so far. I may not be as lucky next time).

But apparently it’s not just to my school that I need to admit I am disabled.

As I was writing this I got a call from the patient assistance program with the medication I am taking for my MS.

When this whole thing began, I didn’t have insurance. I never really needed it; I was very rarely sick. When I went blind and we were told that there might be something wrong in my brain, my mom and I decided that it didn’t matter and we needed to go to the hospital- we would figure out what to do about the bills later. This led to (and even this is hard for me to admit) my applying for county medical services.

It’s a pain, but there is no way on my salary that I could have afford the, at least, $25,000 in hospital bills I had just from the first two visits. I haven’t had many problems with them as far as my MS treatment goes- until about 10 days ago.

I was informed by my pharmacy that my insurance denied my refill. After tons of calls, I found out that they will only cover 30 days of the treatment in one lifetime.. because THAT makes sense. We managed to get one more month approved on emergency because when we found out, I only had one shot left.

I’ve been waiting to hear from this program for a few days because they cover the treatment. So when the lady called today, I rehashed this whole story to her. After answering her questions about my financial state and personal situation her words were: “I strongly suggest you apply for medicaid.”

Basically, she made it sound as if they were going to deny me.

It’s not just the thought that I am going to be denied, but the word- medicaid. To be 27 years old and get told that you, basically, have to apply for something usually reserved for the elderly or the seriously disabled? It felt like she was telling me that I was incapable of taking care of myself.¬†Once again, I’m being forced to admit that 1) I’m disabled, 2) I need help.

Oh, and she continuously used the word “indigent.” I teach kids all the time about word connotation. That word has a negative connotation. Look up the synonyms on the merriam-webster website and you’ll find words like: beggared, beggarly, destitute, dirt-poor and penniless.

Let’s be clear on one thing: I am none of those things. I wanted to scream at her. I work. In fact, I work a lot (in case you don’t know, I work for the juvenile court schools). I have a position that does not offer insurance or full-time work. But 1)I love it and 2) It allows me to go to school. Oh, did I forget to mention that I am also a full-time student and the managing/ copy editor for my school’s paper?

The thing is, the medicine I am on costs just under $4500 per month! Almost no one could afford that. It doesn’t make me a “beggar” or as she preferred, “indigent.” It makes me normal, it makes me a college student.

But, I guess it goes back to that needing help thing. I know it was her job, and it was probably a part of her script, but it hurt. It just reminded me even more that I am disabled and I need help.

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Wearing my heart on my wrist

I typically wear my heart on my sleeve. After Friday night, I now wear my heart on my wrist.

I impulsively asked my boyfriend at dinner if he wanted to do something crazy? Based on his look, he was afraid (and typically, he probably should be). I told him I wanted to get my tattoo. He thought I was insane (he usually does), but he never said no. He also never said yes. Somehow, we still ended up at the tattoo shop.

MS patients, for whatever reason, typically don’t talk about their disease. That’s literally impossible for me. I keep referring to this tattoo as a “conversation piece.” It’s an orange support ribbon on my left wrist. I want people to see it. I want them to ask questions.

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My favorite thing to be told is, “You don’t look/act sick” or, “You must be faking because you do all this stuff.” Seriously, I love when people think I’m not actually sick. It’s a teachable moment for me. I love telling people about my disease and explaining that, while I don’t look/act sick, at the end of the day, I’m usually a different person. That, at any given time I could end up in the hospital, or lose my ability to see or any various number of things controlled by my central nervous system.

I don’t want their pity; I want their awareness. I want this disease known. The more people who know about it, the sooner we may have a cure. I’m not suffering too terribly right now, but others are suffering every single day from it. They deserve this cure.

This tattoo is my scarlet A. Not the kind I will ever be ashamed of, but more like the Emma Stone character in “Easy A.” I wear it proudly. I want people to see it. I will be fighting this disease forever. Scratch that. I will be proudly fighting this disease forever. I figure, with this tattoo, I’m letting MS know that I’m not backing down from this fight. I don’t back down from a fight. I want the world to know that we can all fight this thing together. They just have to ask.

I wouldn’t wear my heart on my wrist if I didn’t want people to ask why.