Baseball and my MS

It’s no real secret that I am a huge baseball fan. I’m in school to be a sports writer, and for Christmas the better half bought me Padres season tickets (not that I expected full season, but that’s what we have).

It was a strange coincidence that my first MS attack manifested while I was at the last game I would attend last season. It wasn’t the last game because I got sick, but it was the last game because that was what I had planned. It was a Friday game and the final home game would be played that Sunday. I attended a lot of games last season.

However, I just realized an even stranger coincidence. At least, I think it is. October 9 was the day I went to the ER where I was finally given some reprieve from the unending questions of why I was blind. Exactly six months later I will be at the Padres home opener for the 2013 season.

I couldn’t think of a better way to celebrate six full months of fighting this thing.

When I started my Rebif treatment I experienced side effects that wore me down and effectively left me couch-bound on every shot night. I was useless. I felt horrible that the better half and I had just started dating and we were spending the majority of our nights sitting on my couch while I was unable to move my body (how I WISH that were an exaggeration).

Finally, my doctor realized these side effects were not worth what the medicine was supposed to be doing. Research shows that taking 22mcg is equally as effective as taking 44mcg. He lowered my dosage because he felt that I still needed to live my life. I mean, jeez, I am only 27; I want to make as much as I can out of my useful years.

Once I began taking 22mcg I became a more productive member of the world (not that I had quit working or going to school, but that was about all I could do). The side effects were still harsh, but less so than prior. So I gave myself a deadline. My body would be allowed to react however it wishes until the home opener. I set this rule back in February, before I realized the six month coincidence.

It’s not necessarily fate or kismet, but it’s a happy coincidence for me. It seems that baseball keeps appearing to be my saving grace from something that, at the very least, nearly continuously occupies my mind.

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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.

How it began: Part 2

The doctor made it sound urgent enough that I called my mom first thing when I walked out and told her we were going first thing in the morning. He wanted me to go to the Shiley Eye Center at UCSD in La Jolla, but when we arrived, they told us they didn’t have the doctors I needed, plus it was going to be too expensive. Instead, they suggested I go to UCSD in Hillcrest.

When I first got down there, I was afraid I was in some horror film. The waiting room looked yellow to me. I don’t know why, it just seemed like everything was glowing yellow. I told the man checking me in a brief idea of what was happening. You’d be surprised how many times you can hear “that doesn’t sound good” and still find it funny. I have a very twisted sense of humor.

When I went back to triage, they asked the questions I kept hearing “do you smoke?” no. “was this from abuse?” no. “Can you read this eye chart?” No. They still decided to tempt fate and see if I could read the eye chart. I really don’t understand what was so hard to understand when I said “I can’t see the paper on the wall. In fact, you don’t even exist right now.” He was really confused. I’m not complaining. Not at all. I had such a great experience there, actually, that I was finding everything amusing.

I was brought back to the area where they help you fairly quickly. I think they, like everyone else, thought I was going to be a simple case, because I was placed on a bed labeled “Fast Track 2.” How wrong they were.

I thought this would mean everything was going to go quickly

I was even seen fairly immediately (and for the ER that means within the hour). More poking and prodding and questions. At this point my mom had memorized the story of what happened word for word. I had two doctors examining me so closely that I knew one of them had a little too much garlic for lunch. They were confounded and said I had to see an ophthalmologist right away.

At this point it was about 1 p.m. and I was begging my mom for food. I was starving. So, in the interim she caved and went to find me food (who can resist my charm?).

The only food my mom had until she got me a sandwich

Soon, opthalmology was there to whisk me away and save me from my blindness. I hoped. And yes, I’m being dramatic.

Unfortunately, after more examining and dilating and questions, he literally could not find a single thing wrong with my eye. He was certain that the original diagnosis of Optic Neuritis was correct, but he, too, couldn’t find a source for it. He left the room for a few minutes and came back with an eye surgeon. Wanna see someone freak out? Do that to them. I certainly had no inkling that I may need eye surgery for this mess. But still, she couldn’t find anything wrong.

You know that line from Mean Girls when they’re in the assembly and Cady says something like, “Have you ever walked past someone and known that they were just talking about you? Ever had it happen 200 times in a row?” That was how I felt when I got back to the ER.

We arrived sooner than they had expected me, but every eye in the hallway was focused on me. There were whispers and looks, it felt like I was the cadaver in the science lab. It was worse because my eyes had been dilated so everything was blurry. While standing there a nurse came up and introduced herself to me as my nurse for the night. I stupidly asked if that meant I should expect a long night then. Her giggle was polite enough to make up for my moment of idiocy.

This must have been her name. I was really out of it, but knew I needed to document everything

She then showed me to a room, with a door and hooked an IV into my arm- unexpected for sure. Yep, it was going to be a long night.

Yuck! This was a surprise.

Soon I was taken off to have a chest x-ray (for what, I’m still not sure) where I spent more time waiting to be x-rayed than in the actual x-ray. Back in my room, I was just happy to have a TV that I could watch baseball on- even if it was blurry from the dilation.

A little while later (I’m pretty sure it was like 8 p.m.) they took me to MRI. It’s funny, they made this huge deal about me being claustrophobic and freaking out. They gave me an eye mask and earplugs and I was good. Well, mostly. It’s ridiculously uncomfortable, and my head was too big for the head stabilizers.

45 minutes or so later, I was back in my room and all I wanted was food. They brought my mom food, but wouldn’t give me anything. When I asked, they simply said no. So, I asked if I could even have Dr. Pepper (I can’t help it!). They said no. Water? No. Luckily, I at least was able to get a small explanation. I might need brain surgery. If I could have ran, I would have ran as fast and as far as I could make it.

In fact, my exact words were, “It’s not that important. I don’t reaaaallllyyy need my left eye. Baseball is just as good from my right eye.” The tech just stared at me. He actually put in the effort to convince me that baseball required both eyes, but it wasn’t working. Then he laughed and told me I would calm down.

When my doctor came in to talk to me a little while later (third ER doctor at this point) he explained a little of what was going on. I told him that ultimately I had three goals for that night. 1) Find out what was causing the problem and start toward a solution. 2) No knives in my brain. And 3) EAT DINNER. I was just glad he understood the logic behind that (plus he was really fun to look at, so having a quirky/ weird conversation was an added perk). I don’t think I would mind if he ended up on my team of doctors.

He was quite agreeable because he informed me that there would be no knives in my brain that night and dinner would be on its way shortly. I wanted to hug him, and not just because he was cute.

Soon, a sandwich and yogurt and ibuprofen was delivered to my lap (I opted for that Dr. Pepper that my mom had bought me earlier). Even though it was crappy hospital food, I seriously celebrated like it was a 5-star steak dinner. Another one of my techs stopped in to check on me and all I could do was fist-pump (I know…) and yell, “they’re letting me eat!” He celebrated with me as well.

Shockingly, they told me I was the normal patient on the floor that night.

Around midnight (right in the middle of my Friends episode) the neurologist stopped in to finally tell me what was going on. After telling her the long, drawn-out story, I could tell she had already come with a diagnosis in mind. The rest were just formalities. No, I can’t read the eye chart on your phone. No, making the letters smaller does not make it easier to read, your phone doesn’t actually exist in my left eye. No, I can’t see the red on your phone. I know it’s red because I cheated and looked with my right eye.

So here it was; this is what she told me (approximate quotes. Remember I was exhausted and it was going on 13 hours at this point):

“We found some lesions on your brain. Three of them are older and have been there for some time. I feel that there is a 50 percent chance that you have Multiple Sclerosis, and a 50 percent chance that this was a one-time occurrence. The lesions are consistent with those created by MS, and I feel that MS is what is causing your optic neuritis.”

I’ve always imagined what it would be like when I found out that family, or someone I love or I got life-changing news like this. This isn’t how I thought it would go. I expected tears or shock. Nope. I just sat there and listened. There is nothing I could have done to stop this, it’s obviously in God’s plans for me. I have no idea what that plan is, but there’s something there.

She explained what the next steps would be: an MRI in a month to see where the lesions are and a visit with her to determine a course of action. I have the option at that appointment to just start MS treatment as a precaution even if the lesions have gone away.

She mentioned getting a spinal tap/draw something or other to make sure this wasn’t a virus. Let me tell you, I was in a good mood until she mentioned sticking a needle in my back and laying flat for an hour just in case. It was like 1 a.m. I was sooooo not okay with this course of action. It was almost as bad as them trying to stick a knife in my brain. She came back shortly and said that the spinal tap thing was not going to be necessary because she was certain it was the lesions causing my eye problems. She also said that I was going to be getting a high dose of steroids via IV for 5 days to start the healing of my eye. I could have kissed her. She offered to admit me, but do any of you really see me sitting around for 5 days in a hospital just because I need an IV? ha! Plus, I couldn’t expect my mom to drive down to Hillcrest every day for 5 days, and I knew she wasn’t going to leave me alone in the hospital for that long. She is a mom after all.

When they set the IV up, I’m not sure that anyone could differentiate between patient and parent.

It was really late

So, after the IV and the discharge papers and conversations with every nurse, tech and doctor on the floor (I promise you, they really were hiding in my room all night) I was finally out of there! 15 hours of waiting and wondering. Some of the staff even cheered for me. That could have been the delirium seeing that.

So there you have it. It’s lengthy and unnecessarily wordy, but that’s who I am. I am not throwing a pity party (although nap time has been a frequent occurrence at my house right now). There was nothing I could have done to stop this, and the only course of action now is to attack it head on. There are so many people who have it so much worse than I do. My neuro ophthalmologist told me that I won’t be the poster child for MS, which is good because I don’t want to be. I’m only writing this to document and to tell a story. I am a writer after all.