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.

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Ending Limbo

I go to the neurologist on Wednesday, but I felt like writing an update since my neurologist called on Friday. This is what I know.

Here is the short version: I have MS, just not a diagnosis. Barring some kind of miracle, I am not moving to Texas.

Okay, I’ll explain. Diagnosing Multiple Sclerosis is complicated. From what I understand, patients must have two separate attacks on different parts of the central nervous system to be officially diagnosed. I have had one. There was no change in my lesions (for better or worse) except improvement on my optic nerve where this attack happened.

She says that she is sure I have MS based on the location and pattern of the old lesions.

She says that I have the option of starting treatment now, or waiting. To clarify, treatment will not cure it. It will not stop it. It won’t even make it go away. It’s not something I take for a short amount of time like with strep throat either. What the treatment does is suppress my immune system and potentially delay the next attack. She’s pretty confident that I won’t have another attack in the next month or even the next year, hence the lack of rush in starting treatment.

To answer your next question, no, I haven’t decided what I am going to do yet. I have done a ton of research, and I weighed my options. A part of me wishes she would have just said, “You need to start treatment and this is the kind you need.” Instead, I have the option of treatment and the option of two medicines. She did give me a lot of information to research. It was stuff she said might be over my head or beyond my area of interest. She was wrong. Reading that was a ton of fun though, let me tell you…

I am seeing a different neurologist on Wednesday. There was a scheduling complication and my neurologist is pregnant, so they scheduled me with her attending. I want to talk to him before I make a final decision, but I do know in what direction I am leaning.

When I first found out that MS was a likely diagnosis, and that people in Texas tend to suffer worse symptoms, the first thing I said to my mom was, “don’t for a minute think this is going to stop me.” The problem was I didn’t factor in the real-life aspect of this thing.

The reason Texas is most likely called off is because of the uncertainty. If something were to happen while I were in Austin, because we don’t know when it will happen, everyone is out here. I do have amazing people out in Texas who would be more than willing to help me, it’s not the same living with/ near my parents. My insurance is out here, too, and obviously that is crucial. And, most importantly, if I choose to start treatment, I will need blood tests monthly, and I will need to visit my neurologist quite often. I am insanely disappointed, but the hardest part is that I understand why I have to stay.

And, just to clarify things I’ve been asked:
– No, I am not disabled. Not in any way. My attacks will happen, and they will be mostly reversible. I am (and will be) able to take care of myself.
– I won’t be the person who you typically think of with MS. The media makes it look like I will slowly get worse. I will (most likely) be able to continue with life and most people will never know that I am sick. The only reason I am broadcasting it is 1) when I got sick no one knew what was wrong and it was the easiest way to update everyone and 2) I’m a writer and it’s what I do.
– Lastly, my eye isn’t changing much, but I have learned to function with it. I can see, but it is blurry. During the day, I mostly only struggle with knowing when a car’s brake lights are on, but that is only with my left eye. My right eye is fine. I can drive at night now. It’s almost easier than during the day. I am not a hazard on the road, and it is completely legal.