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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4 thoughts on “Sometimes, it’s a struggle

  1. Apply for MediCal and forget the lady on the phone. These safety net services are there for a reason- so that folks who need these services get them. You don’t need to feel bad, you’re not trying to abuse the system, you’re simply trying to access services that you need and your tax dollars pay for. This is exactly why these programs exist.

    Also, stop being afraid of words. Being on MediCal doesn’t mean you’re a bad person or lazy or lacking character. These negative connotations only exist because people who are against programs like MediCal hurl these accusations at recipients in order to try and discredit the program… but that doesn’t make them true.

  2. From the sound of it you are a strong and talented young woman who is doing everything in her power to keep the disease from controlling her life. And you go girl! Just take one day at a time. Just because you are required to categorize yourself as disabled, don’t believe it for a minute. When I was forced to submit forms to work declaring my “disability” it was degrading, and made me feel like I was weak and everyone around me was looking at me with nothing but sympathy all the time. It’s not easy, but try your hardest to push past the idea of being “disabled”. Stay strong. You’re not alone.

    Jess

    P.S: what treatment are you taking? Rebif? Betaseron?

      • I am currently on Rebif, also. Switched from Copaxone since I could not stand the daily shot. Still find myself dreading the Rebif though…how are you coping with it?

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