Life Is A Bowl Of Cherries

Right now, it's the pits. I have been feeling really strong lately with the help of Pilate’s, but apparently that has been helping to cover up the most recent effects of my MS. I had a doctor's appointment on Halloween and I failed some very basic tests. The neurologist stabbed my foot with a safety pin (literally) starting at my toe. I could feel that he was touching me, but it didn't feel sharp until he got close to my ankle. I am also having a problem with clonus, which means the doctor can make my foot twitch like an epileptic. Based on the neurologist's assessment the Copaxone injections I have been doing daily are not working as well as they need to. The doctor feels that I am destine for disability on the current path. The good news is there is a new drug, Tysabri. Copaxone has been proven to reduce disability by 30% while Tysabri reduces disability by 90%. Seems like a no brainer (no pun intended), right? Wrong. The problem is that Tysabri is a new drug. It has only been around for two years. In the initial testing they had a group of people who took Tysabri, a group that took a placebo, a group that took Avonex and Tysabri and a group that took Avonex and a placebo. Of the 600 and some people in the study three of them developed PML, a horrible brain disease. Of the three people with PML, one died and one is a vegetable. However, the three people who got PML were in the group taking Avonex and Tysabri. So what did they learn? Don't mix Tysabri with other drugs. At this point there are over 23,000 people worldwide taking Tysabri as a monotherapy (a therapy that uses only one drug) and there have not been any other cases of PML. So, we have made the decision to change my medicine. I have stopped taking Copaxone for the last 2 days; I have another 28 days to be sure the drug is out of my system before I get my first IV. In the meantime I will be sorting things out with our health insurance company.


This has been a scary decision. I don't really want to live 40 years of my life being disabled; so taking the "calculated risk" of Tysabri is the way to go. But, then I start to feel selfish. What if I do end up with PML and die, who will take care of my kids? Or worse yet, I become a vegetable and want to die. For the record, if I ever become a vegetable PULL THE PLUG! That makes me feel really guilty that I am putting my fears above my children's well being. Which then starts me spiraling into a very unhealthy stream of conciseness that goes something like this: Who am I kidding? The kids will be fine without me. They have lots of people who love them. They don't need me. I am worthless. Nobody needs me. Nobody would notice if I were gone. I am wasting my time as a stay at home mom. I should just go eat worms!

I feel terrible that I have put Travis into this situation. I wasn't diagnosed with MS until after we were married. He didn't know what he was getting into when we got married. Now he is faced with going through this decision with me. He will be the one stuck being a single parent if something bad happens. But, at the same time if I become disabled it is his retirement dreams that are ruined. Since we started dating we have dreamed about retiring early and traveling and living it up as a reward for our hard work. Then the stream of conciseness starts again. If I die Travis would be better off. He would get my life insurance and could remarry someone who would be able to take care of the kids and live our dream with him. Am I that easily replaced? Would Travis feel relief? I love him so much that I want him to have the very best life and I am dragging him down.

I want to live a long and healthy life. I hate this self-destructive self-talk. I don't know how to turn that voice in my head off. I try to tell myself that God will not give me more than I can handle. Together Travis and I can get through anything. We have been through so much that there is no question in my mind that we can do this too. But, it seems like the destructive self is speaking louder than my inner cheerleader right now.

The kids know something is up. They notice that Travis and I quit talking when they enter a room. They notice me crying on my friends' shoulders. They try to over hear conversations I am having with my parents. I don't want them to worry. They can't know what is going on. At the same time, I need a little understanding from them. The stress of all of this is sending me into an episode.

There are a lot of positives that have and will come from this. I get the opportunity to take the most aggressive MS drug on the market. This drug has actually reversed the effects of MS in some people. It will buy us the time that we need. Through all of this I have been reminded about how great my friends and my husband are. I have such a strong support system. I feel so lucky! Travis and I have been through hard stuff and it has made us stronger. This will just make us stronger!