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.

How things change in the matter of just a year

Every New Year I always wonder about the difference a year makes. Sometimes things haven’t changed much, and other times things have changed quite a bit. I think it’s safe to say the my life is virtually unrecognizable to the life I was leading a year ago. At the very least, I definitely would not have guessed the ways my life has changed this year.

Some people get pregnant and have a baby, some people meet someone and get married, and some people move hundreds of miles all within the course of a year. It’s funny, but any of those things would have made a lot more sense to me than the changes that took place in my life this last year.

A year ago I impulsively applied to the Cronkite School at ASU. I was planning to move there this past summer. A year ago I had it all planned out. When I was rejected from ASU, I figured God had a reason and I decided to forget it and move forward.

Halfway through the year, I shifted my plans and applied to UT Austin. I was planning to move there if I was accepted or not. I had a plan. I was getting out of this place. Once again, God had other plans for my life.

Little did I know His plans were far larger than anything I could have possibly imagined.

Only after life had started to drastically change did I find out that I was rejected from UT (due to a terrible miscalculation from the admissions staff). Still, I told my mom that this wasn’t going to stop me. Maybe I should have listened to what God was trying to tell me.

It was three months ago that I collapsed after what would be the final 2012 game I would attend at Petco Park. I swore I was drugged (I still feel REALLY bad about mentally accusing someone of that). Three months ago that my optic neuritis started to rear its ugly head.

Apparently, life only needs a few moments to drastically change.

In the span of those three months I have lost my eyesight, gained it back, made (technically) three ER trips, earned myself a “team” of doctors, had a spinal tap, and gained the permanent label of being diagnosed with multiple sclerosis. Actually, it was in just over two months that all of this happened. Sort of mind-blowing, isn’t it?

I’m actually quite content with my diagnosis and my current situation (however, my new favorite hashtag to use on Twitter is #MSsucks). It’s like I’ve said, it could be so much worse. I’m seriously grateful that in those three months I have found out just how many people are willing to stand behind me and help me through all of this. I’ve actually spent a considerable amount of time wondering what kind of person would even bother to deal with me now that I technically have a brain disorder. I knew my parents wouldn’t really get much of a choice, but I wasn’t sure who else would. I shouldn’t have even wondered. I have some amazing people in my life.

Since the official diagnosis I have started the Rebif treatment. This last Friday I finished the first two weeks of the treatment- 8.8 mcg per shot, three times per week. It wasn’t too bad. The first shot was entertaining. I nearly passed out from holding my breath. I then learned my lesson to not hold my breath the entire time. Perhaps this is why I fainted during the spinal tap? Hmm..

Today I started the second dose- 22 mcg per shot, again three times per week. So far I feel mostly fine, and I realize I am lucky for that. I just hope it can keep up this way. If it’s this easy, then MS really has no idea who it is up against. But here’s a hint for it: MS has messed with the wrong girl. It will not be the reason for the life changes taking place in 2013.

What I know, what it means, and why this is actually a good thing

What I know:

I had a spinal tap on Monday. Let’s discuss how fun that was. Actually, it wasn’t bad except for the part where I fainted. It didn’t even hurt, so I’m not sure why exactly I fainted. It was after the first numbing needle went in. I got lightheaded and next thing I knew I was on the floor. I efficiently freaked my dad out; my mom was too chicken to go back with me.

The reason they use a spinal tap in the diagnosis of MS is for two reasons 1) Check for any viruses that I may have that could have caused this (things like Lyme Disease). 2) To check for the protein products that myelin (the protective covering for nerves in the brain- what is being attacked in the brain of an MS patient) breaks down into when it is attacked

They also did a blood test that day to check for anything else that it could possibly be (pretty sure this is the same blood test I had the first night in the hospital).

My neurologist called me on Thursday to tell me that it is definitely multiple sclerosis. I have a real diagnosis.

What this means:

She reminded me that it looks like I have had several clinically silent attacks. What this means is I have more lesions (so many that I’ve lost count; my chart says “multiple), but they are all located in areas of my brain not affecting life.

The lesions on this scan are the easiest to see

The lesions on this scan are the easiest to see

She told me that I didn’t have to start treatment right now if I didn’t want to. I can wait until my next attack.

That’s not me. I chose to start treatment as soon as I can. With the history of silent attacks, I don’t want to wait until my next obvious attack in a few years and have had 6 or 7 silent ones. The lesion volume will be higher, the attack could be worse and the disease will be further progressed. I would rather take something that may potentially lower the volume of lesions and potentially delay even the next silent attack.

Attack early and fight hard.

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I was given a third medication option by the neurologist who did my spinal tap. It’s an injection 3 times/week. I’m not excited about that part (except I have a wonderful friend who has volunteered to do it for me once in a while). I am, however, ready for this journey; there is a reason I have this. I don’t know what it is, but I’m eager to find out.

Why this is actually a good thing:

I keep getting funny looks when I say this is a good thing. It sounds ridiculous at first, I know.

Had the spinal fluid not contained the protein or a virus, we wouldn’t be here. We would have to start all over again to try to figure out what the heck is wrong. As okay with everything as I have been, I’m kind of over being poked and prodded every week (the upside of that is my pain receptors are dying a quick death and I am now able to fall asleep when I get my eyebrows waxed).

We had a plan before I even had the spinal tap. I knew what I was going to do. The future may have been unknown, but at least I knew how I was going to attack it. Without a diagnosis, I had no plan. Now that I have a diagnosis, the future at least has a path I can follow.

The other reason this is a good thing is that I realize this could be so much worse. Going into UCSD that first day, I had no idea what to expect. Then they started talking brain tumors. No matter how disappointed I get that life is turning out like this, I will ALWAYS remind myself of that first night when they thought it might be a tumor; I’m lucky to have MS.

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.