The BS of my MS

I was diagnosed with Multiple Sclerosis April 11, 2006. It was a fairly quick diagnosis and there are days/weeks I can mostly ignore it. For those days I can't, this blog documents my journey.

Wednesday, April 26, 2006

This article is interesting. MS may be linked to the Epstein-Barr Virus (EPV). About three years ago, I had mono, which is a member of the EPV. Who knows? Maybe that's what triggered it?

Sunday, April 23, 2006

I have been racking my brain as to how the quote Walgreen's gave me yesterday could be accurate. Then, today, when I went to Target to get my birth c0ntrol filled, they also charged me full price. I am thinking that maybe Blue Cross doesn't have me in the computer as meeting my deductible yet. I just met it on Thursday, or something. So, let's hope.

If the medicine is $700/month, there will be no way. Seriously, no way. However, if I can get it down to about half that, I will try my hardest. I am sure we waste a lot of money going out to eat or on stupid stuff. Not sure exactly how much, but if we basically don't do anything that costs extra money, maybe, just maybe, we can find a way. I am not trying to sound pitiful, but I just really want this medicine. I mean, it slows the progression of MS. Without it, my progression rate is unknown. It's too early to tell how it is progressing on its own.

Today was kind of a bit unsettling. My equilibrium has been off all day. I haven't fallen, but I have kind of swayed and have been unsteady. I noticed it as I was drying my hair and as I was in the store.

A bit of a vent: today, someone asked Brad if we had come up with a plan, yet. Okay, we just found out on Friday that the medicine was THIS much. Most offices are closed throughout the weekend. So, what would that plan be? Sure, we have been thinking--at least I have. I have a few different avenues I plan on looking into. But why would someone be inclined to think that we have come up with a magical solution. There isn't a magical solution that I know of. So if you do know one--please share. Also, I think this person doesn't realize that all of the medicine is expensive. Yes, from what I know, Rebif tends to be "the best." However, it's not that I am just whining because I want the best medicine and can't have it. They all cost $1500 and upwards, and Rebif is the only to work in all three areas. Therefore, it's not as if I want the $2000 medicine, when there is an alternative for $100. It's just not that easy, kids.

And the steroids...I feel like I have a tape worm. By that, I mean, I am hungry all the time. I eat, and I am still starving. I have eaten fruit, but my body wants things that aren't nearly as good for me--like french fries and nachos. I want salty goodness. I ate 3/4 of a row of saltine crackers tonight. I need to watch it, or I will balloon up. But I am hungry, and not just a little. As in, even when I am sitting here working, all I can feel is my empty-feeling tummy.

I don't think anyone reads this. If they do, fine. If not, fine. But I am sure my counselor will be asking me what I have been thinking, and this is a way for me to look back and remember. In the meantime, if anyone is curious about what's been going on, they can know, too. But this is in no way an attention ploy.

Friday, April 21, 2006

Edit: I just got a call from the program through the drug company today. Actually, I got two--one verifying my insurance info and one telling me my benefit eligibility. The medicine is more expensive than I thought--twice as much. It's over $3500 month, which leaves me 20% portion being over $700/month. But because I have POS (point of sale, allegedly...more like piece of shit) prescription coverage, I have to pay the WHOLE amount up front and wait to be reimbursed. I don't have $3500 laying around anywhere--not even on a credit card. And even if I did, I cannot afford $700 month for medicine. Who can afford that? I wish I knew what I knew now when choosing insurance. And when it comes time to switch, I can't switch because all of this would be uncovered as a pre-existing condition. Ridiculous! It's such a trap.

I received a large envelope in the mail from my doctor's office, containing information about Rebif, the medicine I will be trying. I also received a call from the MS Lifelines department--the section of the drug company that works at getting people medication. Anyway, I have just looked through the information, and a new sense of reality has set in.

One thing that strikes me is the following quote: "None of the ABCR agents (the disease-modifying drugs) will make you feel better or return abilities that you once had. You will not feel it working. You take an immunomodulator in hopes of having fewer/milder flare-ups in order to try and delay the progression of the disease. The ABCR agents do not stop flare-ups." Sure, slower progression is great. But will I be able to feel my legs fully? Or my abdomen fully? Will I get to play tennis? Or will I get to wear sandals. I know these things sound so minor, but still.

But they did send me a pen and a little messenger bag in the mail. So, it is all worth it. ha!

Tuesday, April 18, 2006

Today I had my last round of steroid infusion. Now, I start 18 days of an oral tapered dose. I have to make sure I remember to take them. I am not use to taking medicine in the morning.

I mentioned to the nurse today that I wish she were there yesterday. Today's nurse was the one who did my first IV, and it went smoothly. She is also very nice and not irritating. I mentioned that the nurse yesterday just bugged me; she had a story (personal story) for everything. She even shared that her son was recovering from a horrible car accident and having surgeries, etc. Not to sound completely uncaring, but I really didn't care. Today's nurse is the managing nurse, which I didn't know. She thanked me for telling her and was irritated with the other nurse. I felt bad--I was just kind of venting. But she seemed like this wasn't overly new news.

I am still so hot and sweaty. I feel like I am dying, and it's only in the 60s today. I also feel so smelly. It's wretched.

In good news, people have noticed I am moving around better. I hope that it continues, even after I go on the oral steroids. I also need to check back in with my doctor, to see when I have to go back.

One last vent: insurance companies SUCK. I am waiting around for them to start processing these blasted claims so I can meet my deductible and start having them pay 80/20, which still leaves me owing a heck of a lot. But it will come from somewhere. Afterall, you can't get blood out of a turnip. And if you're my nurse yesterday, you couldn't get blood out of someone, even with really easy-to-find veins. Bleh.

Monday, April 17, 2006

As of Friday, I was noting a big difference in my legs. I was feeling slightly more, but the movement was greatly improved. Unfortunately, by Saturday night, I stiffened back up. Sunday, I was in the shower. I had just shaved and I slipped a bit. However, since my equilibrium is off, I was unable to regain my footing. I fell, taking the shower curtain down with me. My mom rushed into the bathroom, and there I am, bare naked trying to get up. It was humiliating on so many levels. I thought I just fell gracefully, but I have ginormous bruise on my butt--bright purple, too. If it weren't on my butt, I'd take pictures, but alas it is.

Today, I went for my next to last dose of steroids. They put in a new IV, and the nurse was making me nervous. I told her she gets one chance to find the vein, and she said I was making her nervous. Her nervous? She has the needle. I have the veins. She was unsuccessful the first time, and then ended up putting the IV in the top of my hand. She just didn't seem as exeperienced. She didn't cover the needle opening with gauze; she just taped it. So now, the clear tape shows the IV sticking out of my hand. There is also remnants of blood in the tube. I am hoping when I flush it out tonight it goes away. Ick.

There is something that has been irritating me. Some people, particularly who those in the field of psychotherapy for example, remark how hard MS is to diagnose. Sometimes their comments include the disclaimer that "MS is so hard to diagnose," and "If it's MS..." That's great and all, but my neurologist specializes in MS. After looking at my MRI and hearing my history of symptoms, plus doing some sensory tests in his office, seems pretty dang sure. On one hand, I know people want to be hopeful. On the other hand, I am sick of people being wishy washy, trying to make it something else. Being uncertain or in flux does not help me one bit. Let's trust the doctors and move forward. THAT'S what I need.

In case you're curious, the steroids have some side effects. They make me retain water. I noticed I had gained a few pounds just over the weekend. I peed several times last night, during the night, and the weight had come off. Water weight. The steroids make me hot, so I am sweltering right now. This makes me think I smell bad--like BO. And showers and deodorant only do so much. My tummy feels bloated and I get heartburn. I have been taking Tylenol PM to help me sleep.

Today has been a struggle for me with anxiety. On one hand, I know steroids can cause depression, particularly if you go off of them immediately. I am on 1000mg for three days, and then I had a two day break. Could my body be reacting to the shift? Once the infusions stop, I will go on oral steroids to help my body adjust. Maybe the anxiety is not related to this. But I woke up with a panic attack, and I have had them throughout the day. I feel like I am gasping for breath. Maybe it's just all that is going on in my body. I have steroids, then no steroids, then more steroids. I have Effexor for anxiety. Birth control hormones coarsing through my veins. Add this to the natural psychological stress of illness, school, and life. We might as well call the men in white jackets.

Thursday, April 13, 2006

Today was a bit better. The stairs were a bit easier than they have been for a couple of weeks. Could the steroids be working? If so, praise the Lord.

Last night, I drank water with lemon. I thought, "'s bitter!" Tonight, the same thing. I realized it's from the steroids. During injection, I get a bitter taste at the back of my mouth. Today, I asked for something to combat it (I am paying enough for these injections, the least they can do is give me a can of Sierra Mist!) It helped, but still, the bitterness is lingering. Water doesn't cut it--so maybe some orange juice or my beloved Pepsi One will do the trick.

I have been awake for 15 hours, and it is only 7:30. Maybe I will crash peacefully tonight.

I found out that my blood work came back okay, for the most part. My ANA (testing for auto-immune disease) and lyme disease test came back okay. My chest x-ray was "unremarkable," which in this case is a good thing. Just think...for once I want to be unremarkable. Go figure. My Westergren Sediment test was a bit high, which the nurse said meant there is inflamation somewhere, likely. When I asked about the inflamation in my central nervous system causing this exacerbation (flare up) she said that wasn't likely. When I looked it up, high levels can be caused from anything from kidney disease, severe anemia, or pregnancy. (I'm pretty dang sure I am not prego!) However, the nurse said that normal range is 0-20 and mine is 25, which isn't high enough to cause alarm. That's good.

On one hand, it would be nice to have this NOT be MS. On the other hand, I am just ready to know and move forward. So, in once sense, I am thankful that the blood work didn't raise any new flags.

Last night I ate chili, and it upset my stomach so much from the steroids. And I have been up since 4:15 this morning. I might try some benadryl.

Wednesday, April 12, 2006

So I've started posting here for one else but me. I am reluctant to talk about this with the blog world, because I don't want it to seem like I am letting MS define me. I am not like "Hi. My name is Heather and I have MS." At the same time, this is a big deal. It has affected various areas of my life. I have been to more doctors and the hospital more times than I have in years combined.

Today, I started the steroid infusion. I sat in a hospital room for over an hour while they prepped the IV and did the 250cc of steroid drip. It was boring, but I did watch some MTV's "My Super Sweet Sixteen." A high price to pay for cable. I now have an IV with a cap on it, sticking out of my arm. I am wearing a net over it, which looks very much like the 1980s Madonna style. I need it to go up like a glove without fingers. And white is not nearly as badass as black, it will do.

I know this is the start of a journey. I am not painting it out to be doom and gloom. Sure, there will be challenges, but life can be very full, still. Still, there are things that I think about...little things--things I never thought about before. They are:

  • I hope I get the feeling back in my legs. I want to play tennis, and I hate to think what life would be like never playing tennis.
  • I am making arrangements to move to the first floor, which is one floor up. With flare ups--good days and bad days--I just don't know what strength, balance and energy I will have.
  • I have to consciously think about what shoes I will wear. Wearing sandals, like slide on sandals, just don't work. Since I can't feel my feet, my sandal doesn't stay on, and my foot pushes it's way to the top so that my toes hang over the edge.
  • The everyday tasks of grocery shopping and running errands is exhausting.
  • People make jokes about canes and scooter carts. I laugh. But inside, I feel a bit strange, because I know if it progresses much further, I may need some help to keep me steady. But I am 26 dangit, and will walk as long as I can.

The uncertainty--not knowing if it's progressive, if it will go into remission, etc--is annoying. Even today as I sat through the IV drip, I kept trying to see if I could feel anything more in my feet. But I am sure it's too early to tell.