MS through a Teenager’s Perspective:
Back when I was in the eighth grade (2008), I began experiencing double vision. Honestly, when the symptoms began to appear I though it had something to do with the weather (I don’t know why) but I started getting annoyed at the fact that I couldn’t focus on what my teachers were writing on the board. Eventually, I told my mom about my vision and so we saw an eye specialist.
The guy was nice and didn’t even charge us for an examination. But it was he who first caught on to something being seriously wrong. He told my mom he thought it might be a tumor of some sort, thus freaking my mom out. We then went to the ER.
This was my first experience ever in the ER, so initially I am already scared. I mean for God’s sake, I was a ripe 13 year old. The nurses did their usual testing until finally we were told some tests were needed to be done. The God-awful spinal tap…. That day will forever haunt me. I had some trainee nurses digging a needle into my back, trying to get the fluid. Meanwhile, I am half naked, freezing, and terrified. After nearly 2 hours, momma bear stepped in and put things to a stop. If these docs were going to get any kind of spinal fluid from me, I was going to be asleep. But they didn’t perform that test that night. No, my mom got me the heck out of there and we went home.
We were contacted by some neurologists telling us that they can perform these test in a more suitable manor. Hello anesthesia! So the next morning I went into the hospital and they did the test. After the results were in things weren’t looking too good. They then wanted an MRI of my whole body. By then, I started to feel the aftermath of the spinal tap because my back was killing me. Although, nobody even told me about the side effects after a spinal tap. I endured through the pain though during the MRI and eventually it went away. After my docs looked at the MRI results it was official. I had MS. They were shocked it wasn’t caught earlier because I had lesions all up and down my spine, but yet I never had any trouble walking. I guess I was a rare case.
To fix my double vision, I was admitted for 5 days to get an IV-steroid therapy. It worked, it took away the double vision bu the damage was already done. I was forever changed. After the treatment I returned home with a new Avonex regime to keep my disease at bay. And it did….at least for awhile.
Eventually, I guess my body was getting used to the Avonex because I had another flare up. Vertigo. Oh my gosh, I never wanted to ride any roller coaster again after that. No matter what position I was in, the world was spinning. Even after I threw up everything I had in my stomach, the vomiting didn’t cease. Thus, another trip to the ER to fix it. I just got some nausea pills and eventually it went away.
Pretty soon after, I was switched on to Rebif. I did pretty well on it, but my body was taking a beating from all of the shots.
Now, I’m not sure if I was just too young for the news to get to me emotionally, but back then I was pretty chill about everything. Nowadays, I find myself in these moods where I just can’t handle it. I question like ‘why is this happening to me, before i even could have a life of my own.’ But its not like the problem is going to go away just because I throw a fit. No, I had to grow up.I actually read an article on here by a woman named Kim Dolce. She said how “The payoff reveals itself the day that helpless voice inside us drops to a whisper.We discover our power in small epiphanies,” and that statement alone just struck me.
Anyways, the next time I had a flare up was this past October (2012). I was a senior in high school by then. My life was leveling out and I had become somewhat established. I was in Marching Band and we were about to compete to see if we’d go to State. But no, my left eye decides to stop working because MS was like “Remember me?”. What was worse was that I was in the middle of class, one that I hated, and all of a sudden I can’t see out of my left eye. I’m not going to lie, I panicked and texted my mom and she got me out of school. That night we went to the ER. Deja-vu right? This time the steroid therapy didn’t take away my problem (optic neuritis). So they tried Plasmapheresis. That didn’t work either. So here I sit, typing my story with only one good eye. It’s not hard to see but its definitely difficult at times. I don’t know how many times I’ve walked into doors or corners. It makes for a good laugh though.
Eventually, I mentioned to my doctors the new Tecfidera drug and now I am on that. To me, it seems like the best oral form because there are little to no side affects from it. With Gilenya you have to be monitored because of the heart thing. Tysabri is constantly being brought up to me, but I am not going to risk my life like that. If a treatment has a risk of DEATH, that’s an automatic NO. So I’m team Tecfidera.
Notice how I never mentioned anything about medical insurance? Well, that’s because I don’t have any. Nope, none. I’ve been rejected by many types or companies because (before I was 18) my parents made too much, but yet we’d be homeless if they did get the insurance. Now, I am just fighting for disability. But, apparently I’m not disabled enough. So now it’s a waiting game. Just waiting on a new flare up to take out one of my major functions just so the disability people recognize that there’s something wrong with me. Hopefully its not the breathing one, I hear that is quite important. Pretty messed up huh?