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.

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.

IMG_0258

 

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.

The blindness is slowly going away

Sometimes we run into what is called a non-story. We start writing and then realize that there really isn’t much to write about. When I was in the ER, I was really excited to write about everything that happened. I told my nurses and techs about it. It was exciting and scary all at once. Then I got home and I started getting better, and I realized that this story wasn’t going to really have any developments for another three weeks. That doesn’t make a very good story. And I questioned why I started a blog (other than a centralized place to not tell the story 1,000 times).

Then I realized I get asked daily how my eye is, and maybe I should update and let you all know.

My eye is… frustrating. Sometimes it is really awesome and almost like everything is just extra bright (because when I went blind it wasn’t black like people thought, everything I saw was actually white blindness and the white lingers). I was warned that it could take a year to get back to what I would consider normal. Me, being the control freak that I am, refused to accept that. Then I realized I don’t get to control this thing (but I certainly won’t let it control me either).

I’m hoping it doesn’t take that long, because this Cinderella act is getting old. I pretty much hate asking people for rides, or a place to stay because it’s night and I can’t drive.

So, even though I have really good days with my eye, I also have pretty bad days. They kept asking me in the hospital if I was seeing double, and I wasn’t because I wasn’t actually getting a second picture from my eye. Now, sometimes my vision is double. It’s hard to focus on things sometimes because I’m not getting the full picture. Sometimes, when I am tired my vision will decrease, or the double vision will get worse.

Don’t get me wrong, I am so happy that it’s even back this little bit. Driving during the day is far less scary, I can see more of the whole picture, I don’t have to cover my eye to read, the list goes on.

I was warned there would be triggers for my vision. The two specifics my neurologist mentioned were stress and if I overheat. I was told if I workout, to not be alarmed when my vision decreases. I thought she was exaggerating; that she was saying this and it wouldn’t actually happen, or it would happen rarely. Yea, she wasn’t kidding. I’ve been trying to work off this steroid water weight/ weight gain (steroids are the devil and out to get me). Tonight I was pushing extra hard and suddenly I realized I was almost completely blind in my left eye again. It was right about then that I realized this might be a long year. It’s not going to stop me, I’m just going to monitor things closely and watch what happens.

As for the future, my neurologist told me to inform myself on MS so I know what my plan is when I go in a few weeks. She has her suggestions, but wanted me knowledgable on the subject. I don’t think she knew what she was doing when she told me that. I want to know every facet, every tiny piece of information that I can. So last night I planned to spend a few hours researching treatment options. Since I’m not clinically diagnosed with MS (you aren’t diagnosed until you have a second attack on a different part of your central nervous system. My lesions are “clinically silent” since they haven’t affected anything yet, and therefore not a cause for diagnosis) the treatment would be towards delaying the onset since I’m high-risk for a second attack because the first came with lesions. I then spent hours researching exactly what MS is and how much information is known on the topic (I already knew it wasn’t much).

I ended up forgetting that I was researching treatments because I decided I wanted to find out how the disease works, what they are researching for a cause and everything else before I looked at treatments. I’m coming up with my plan of attack. I’ll know more about what that means in a few weeks, but I’m sure I’ll get the urge to write again before then.

I will say that I feel more like myself every day. Suddenly on Sunday it was like I was renewed and my energy came back rapidly. Unfortunately, I was quickly re-sidelined on Monday when I was hit with not one, but two migraines.

I got up ready to be back at work and have energy to do it, and suddenly I realized I was blind in my left eye. Not just like a step back, but completely blind. I couldn’t see my hands, or my arm or anything. I panicked. I told my mom this was what I was afraid of: How would I know between an MS attack and a migraine when they both start the same way. I then realized that, even with just my right eye, I couldn’t focus. My mom made me go back to bed and she called my boss to tell her that we weren’t sure exactly what was happening, but she was making me sleep for an hour and we would see which of the two it was. I woke up four hours later. I’m also not sure how I slept so long. At that point I had been asleep for 14 hours. When I woke up, I felt mostly fine, just a little headache. I went about the rest of my day and then at 3 a.m. I woke up with another one.

The most frustrating thing about these migraines is that I can’t take anything for them. My regular doctor asked me to not really take any medicine until my next MRI. All I can take is ZQuil, heartburn meds and Ibuprofen. I told my mom another migraine and the rules are gone and I will take something stronger. I don’t need to torture myself.

I’m fully back now. I’ve had my energy back all week. I’m glad to be back. Sometimes I think this disease really should be afraid of me.

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.