I was thinking about what I wanted to blog about in this post when Lauren suggested I write about my treatment. What the treatment is, what all goes into my treatment, and how I feel after my treatment. I thought that was a great idea so here goes.
I am on a drug called Tysabri. To explain what Tysabri does to treat MS I will explain a little bit about how MS attacks someone. Someone with MS has an over active immune system which attacks more than it should. The immune system will attack things in the brain and the spinal cord that it really shouldn't be attacking and that causes the lesions and symptoms that someone with MS experiences. What Tysabri does is it prevents white blood cells from entering the brain and spinal cord which prevents the body to attacks itself and prevents more lesions and symptoms. This is one of the strongest drugs currently on the market to treat or slow the progression of MS and it has a great track record of succeeding.
Since Tysabri is so strong there are only certain infusion centers that are able to treat people using this drug. I have choosen to go to Mayo Clinic for my treatments for now since they have been treating people since the beginning and know what they are doing. I go up to Mayo every 28 days to get an infusion. When I get there I am brought back to a room to have my infusion and I am asked a whole bunch of questions. Such as: any changes in medication, any new symptoms, any sores or wounds, am I pregnant(i am not a doctor but I think this one is a no everytime but they have to ask it anyways) Once they go through the check list and I pass they can start my treatment. They don't go get the treatment until I am in the room and I have answered those questions. While I am waiting for them to get the medicine they put an IV in my arm because the drug is put into my body intravenously(not sure I spelled that right). Once I am all hooked up they start the machine that pumps the medicine in and I just hang out. It takes about 1 hour to pump all the medicine in and then that part of the treatment is done.
After the treatment is done I am required to stay in the room for another hour while they monitor me and make sure I don't have any adverse reactions from the drug. Once 1 hour is up I am free to go! Treatment is really pretty quick and simple. I am able to head home after about 2.5 hours of treatment and monitoring. The biggest side effect I have had so far from taking Tysabri is fatigue. I have taken Tysabri twice now and both times I have just wanted to sleep on my ride back to Ankeny after the treatment but I tend to sleep in cars anyways so I am not sure what the root cause of that tiredness is. The bigger fatigue day has been the day after. It is really hard to explain the fatigue that I am feeling but I will try anyways. If it is possible to feel like a zombie than that is what it feels like. I feel exhausted and I could probably sleep but I don't feel tired. I am not yawning all the time or anything I just don't have energy like I usually do. I kind of go through the motions with little emotions and little energy to do much. After my first treatment it was really bad and really strange. Almost a zombie out of body experience but the second time I was luckily in a much less zombie like state. The fatigue luckily just lasts for one day and when I wake up the second day after treatment I feel normal again and have my energy back. I have been lucky to have very minimal side effects of the drug and very thankful for Blaine and my mom taking me to treatment so far and my wife being incredibly helpful and supportive before, during, and after treatment. I think a lot of my positive experience so far has been because of them and everyone else who has been supporting me with messages and prayer throughout this whole thing.
The treatment so far has been easy peasy. I am in and out with little side effects and am able to get back to every day life. The strange part about all of this is the fact that I am having this treatment. You hear about people you know going through different stuff that requires this type of treatment but you never really picture yourself in their shoes, and I don't blame anyone for doing that, but I am now in those shoes. I go to treatment once a month where I take a drug that seems to be fairly heavily regulated because of how strong it is. I never pictured myself in this situation, but I am and there is nothing I can do to change that. My mindset has always been, "Nothing I can do about it now, so time to adjust to this change" and that is no different here. I could look back at my life and try and figure out what I could have done differently to possibly avoid having MS or thought about how life would be different if I wasn't diagnosed with MS right now but what does that do me? It doesn't change the fact that I have MS so all I can do is adjust to my new norm. I don't want to just life life with MS, I want to thrive in my life with MS. I want people to come across me at the grocery store or at the gym and have no clue that I go to a treatment center every 28 days and get treatment. MS doesn't define who I am as a person. Having to do treatments doesn't define who I am as a person. God defines who I am as a person and I can't wait to see who I become through all of this!
Take heart!