The “bathroom flooriversary”

One year. I cannot possibly begin to fathom the idea that it was exactly one year ago that I was found passed out on a bathroom floor.

I still remember most of that night like it was yesterday. I would be remiss if I didn’t mention how grateful I am to the people who were there to take care of me that night. If it weren’t for them, I may have been forever banned from Petco Park, and I definitely wouldn’t have gotten home safely.

At the time, I obviously had no clue what was happening. I wouldn’t know for almost 2 more weeks. In fact, I had no idea what was going on. I was scared. I was more scared than I have ever been.

I’m not scared now.

The thing that really starts to get me is exactly how different life is right now than it was then.

In the last year I have had so many huge life changes that I can’t even begin to comprehend them all. For starters, I have learned to deal with the fact that I am sticking needles in myself 3 times a week. That was a huge leap to overcome.

I’ve learned to fight for myself and that I know when something is wrong with my body. I’ve had to figure out how to fight for myself and my healthcare. I’ve had to grow up.

That was the biggest thing about all this- growing up. Before, I was content with letting other people narrate what I was doing, or just ignoring where I needed to go. When this happened to me, that wasn’t possible. I was racking up medical bills and quickly (the first night alone was around $15,000!). Letting things go wasn’t an option anymore. I’ve learned how to handle more than I ever thought was necessary.

Speaking of it happening, that’s another thing I’ve had to learn to deal with. The other day I said something that sparked all kinds of lightbulbs: “This happened to me. There was nothing I could have ever done to stop it.” It hit me. There really was nothing I could have done. This isn’t my fault. I’ve always thought that we can control everything, but we can’t.

But I can do something about this now, and I am.

I hit a bit of a rough patch a few months ago. I had sort of succumbed to the idea that I was going to be disabled. I had accepted what I felt was inevitable. I was still doing my treatment, but I didn’t care about going any further than that. I blamed the “holes in my brain” on everything. I still do, but not in a serious manner.

Then I literally had someone grab my face and yell at me to get it together. That I wasn’t this person. I was told that I used to have control of this thing and now it had control of me. Ouch.

From then on, I took control.

There is concrete evidence that I am doing something right. The lesions on my brain have either a) disappeared or b) shrunk. There is one that is still pretty obvious, but it was the one on my optic nerve. I wasn’t freaking out over that.

My neuro ophthalmologist called my recovery “remarkable” and said there was no evidence that I ever had optic neuritis. I don’t have to follow up with him unless I have more issues (cue celebratory dance!).

They did raise my Rebif dose back to 44 mcg because of a lesion they found on my spine. It’s been taking some getting used to. Rebif side effects are no joke.

It took me a while to feel comfortable with the idea of switching jobs. I knew how understanding my bosses were at this job, and I wasn’t sure how others would be. After a 3-month search (that was intense for various reasons), I am starting a new job on Monday. I will have health insurance in a few short months!

The other big thing that I wasn’t sure I would be able to do again? Running. In April, I couldn’t run half a mile without becoming disoriented and having strange pains- like my teeth and my ears. About a month ago I couldn’t run a full mile. Today? I ran 6.3 miles. I don’t think there has been any better way to show this thing who is boss.

Honestly, I haven’t physically felt this great in a while. It’s nice to be taking charge of this disease again. I don’t ever plan to have another setback like the one I had a few months ago. I know that I may relapse from time to time, but I won’t let it stop me again. I am in charge, not this disease.

And I don’t plan to ever be found facedown on a bathroom floor again.

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Whose body is this?

I don’t know this body anymore. I swear, they must have switched bodies while I was in the hospital. If they didn’t, the one I used to know is completely betraying me.

I think I have mentioned it before, but I am an athlete. I have always been. Even when I didn’t exercise for a while, I could go out and push myself through three miles. It was never a problem.

Apparently this MS body has other plans. Running just a half mile leaves me disoriented, confused, blind and with sharp pains in really odd places (like my ear!). I have also inexplicably gained weight thanks to the tons of medication I have to take.

Sort of a catch-22 happening here.

I have been attempting to learn this new body. I’ve been trying to get out and run as often as I can. Unfortunately, that 7-minute mile I used to run? It’s an 11-minute mile, and that’s up from about 13 minutes the first time I went out. Again, whose body is this?

I realize I am insanely lucky to even be able to run. The current book I am reading talks about these “mythological MS runners.” She doesn’t know where the people who run with MS are. On top of that, she mentioned the lucky MS patients who aren’t totally overwhelmed by symptoms in the “remission” stage of MS. Again, that would be me.

Even still, MS can do whatever it wants. The idea was easy for me to grasp as I sat in a hospital bed with a numb face and a numb spot on my back, but I think that explaining that to people is one of the hardest things to do. I look fine. I get dressed in the morning, I do my hair, I put on makeup and I go to work/school. But somedays, that is a struggle.

When we think of fatigue, typically we think of exhaustion. More recently, I learned exactly what MS fatigue feels like. For me, it is like running full-speed into a brick wall and then using so much energy trying to move the wall that I get nauseous. As if that wasn’t enough, it’s like that wall starts to actually fall on top of me while I am under water.

Running helps that feeling, at least a little for now. It helps, at least, when I can overcome the feeling long enough to get my shoes on and get out the door. But that isn’t always possible. And even when I do, I can only push so hard. If I run too far too fast, that’s when the crazy symptoms start.

I know when people push me and make suggestions, especially when it comes to fitness, they are honestly doing it out of the goodness of their hearts, but it doesn’t always work like that. Just because Jim up the street can run a marathon with MS doesn’t mean I can do that. Just because your cousin Sally does P90X daily after a job that has her on her feet all day doesn’t mean I can do that. But it also doesn’t mean that just because Jill lets her MS keep her on the couch all day that I am going to do that.

I listen to my body and I exercise where and when I can. This is such a vague disease that it creates vast differences in every single one of us.

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.

Sometimes, it’s a struggle

On Tuesday I will officially be admitting that I am disabled. But I still refuse to believe it.

Excuse me while I share a moment of weakness.

For me, this has been the hardest part of having MS. I don’t look disabled, and I certainly don’t act disabled. But according to the world- or at least my school- I am disabled.

Before I was sick I didn’t often ask for help. I’ve now found myself asking for it more often than I am comfortable with. I hate asking for help. I hate admitting that I need help.

On Tuesday I will be going to the disability resource center on campus to have it permanently on file that I have a disability. It’s not that I need anything from them, but it is just in case.

You see, two weeks ago I was in the hospital again. My neurologist is calling what happened a “neurological event,” but it’s things like this that really get in the way of my life. In short, what happened was that I went blind in my left eye (my bad eye) and then my entire mouth was tingly and numb- including my teeth, which sounds SO weird. Apparently, I’m supposed to ignore these events (because THAT will be easy).

As a result of the 16 hours I spent in the hospital that night, I missed work, I missed an appointment I was supposed to have that morning and I’ve missed school twice so far due to follow-ups. This is the kind of thing where I need someone behind me to say, ‘yes, this was a legitimate reason to miss’- teacher’s aren’t always understanding (mine have been so far. I may not be as lucky next time).

But apparently it’s not just to my school that I need to admit I am disabled.

As I was writing this I got a call from the patient assistance program with the medication I am taking for my MS.

When this whole thing began, I didn’t have insurance. I never really needed it; I was very rarely sick. When I went blind and we were told that there might be something wrong in my brain, my mom and I decided that it didn’t matter and we needed to go to the hospital- we would figure out what to do about the bills later. This led to (and even this is hard for me to admit) my applying for county medical services.

It’s a pain, but there is no way on my salary that I could have afford the, at least, $25,000 in hospital bills I had just from the first two visits. I haven’t had many problems with them as far as my MS treatment goes- until about 10 days ago.

I was informed by my pharmacy that my insurance denied my refill. After tons of calls, I found out that they will only cover 30 days of the treatment in one lifetime.. because THAT makes sense. We managed to get one more month approved on emergency because when we found out, I only had one shot left.

I’ve been waiting to hear from this program for a few days because they cover the treatment. So when the lady called today, I rehashed this whole story to her. After answering her questions about my financial state and personal situation her words were: “I strongly suggest you apply for medicaid.”

Basically, she made it sound as if they were going to deny me.

It’s not just the thought that I am going to be denied, but the word- medicaid. To be 27 years old and get told that you, basically, have to apply for something usually reserved for the elderly or the seriously disabled? It felt like she was telling me that I was incapable of taking care of myself. Once again, I’m being forced to admit that 1) I’m disabled, 2) I need help.

Oh, and she continuously used the word “indigent.” I teach kids all the time about word connotation. That word has a negative connotation. Look up the synonyms on the merriam-webster website and you’ll find words like: beggared, beggarly, destitute, dirt-poor and penniless.

Let’s be clear on one thing: I am none of those things. I wanted to scream at her. I work. In fact, I work a lot (in case you don’t know, I work for the juvenile court schools). I have a position that does not offer insurance or full-time work. But 1)I love it and 2) It allows me to go to school. Oh, did I forget to mention that I am also a full-time student and the managing/ copy editor for my school’s paper?

The thing is, the medicine I am on costs just under $4500 per month! Almost no one could afford that. It doesn’t make me a “beggar” or as she preferred, “indigent.” It makes me normal, it makes me a college student.

But, I guess it goes back to that needing help thing. I know it was her job, and it was probably a part of her script, but it hurt. It just reminded me even more that I am disabled and I need help.

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.