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.