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Tysabri or Bust

  
I am attempting to live in my own little world right now. I am craving that hut in the woods.

Some how I managed to set the bar too high. Not somehow. I do what I want, and how I want to do it. That is what set the bar too high. I am blessed to be able to do this. I love everything that I do and I want to do it great. Normally I feel like such a slacker. There are so many more things that I want to be doing, so many more things that I want to be learning! Right now however, I just want everyone to expect nothing from me. Right now I am capable of nothing. 

My infusion had to get pushed back a week. Which I know explains everything. Thank goodness I am here now. A friend of mine posts at every infusion how unhappy she is at infusion time. I don’t understand this. I look forward to my infusion like a life raft. I am terrified of the day that they take me off of Tysabri. 

This thought is what filled my mind on the way here today. Sometimes I wonder if it would make a difference. Do I only notice things that are wrong with me because I’ve already been diagnosed? My whole life I have been the “suck it up and deal” kind of person. I am still that kind of mom. “Is it broken? Are you bleeding? No, than stop complaining.” So why is it that now I am so sensitive with myself? I can still walk, talk, breath, eat, see. I can do everything! Is that because of the Tysabri? Probably. Let’s not think about it, right? 

If I am honest I know that the dizziness and the fatigue are not normal. But is it something that would send me to the doctors if I wasn’t diagnosed? No. Not ever. I’m surprised it did 6 years ago. Of course back then the crap with my eyes and the fact that my face went numb would have sent me. When I think about what I am going through now though, there would be no doctors. 

I feel very, very fortunate with my life. That said, I crave some serious alone time. No responsibilities. No, don’t worry about it Janet will take care of it. For a little while I’d like to be in my hut in the woods. 

Don’t worry world I’ll be right as rain tomorrow. Tysabri is coursing through my veins as I type.

 
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Posted by on March 15, 2016 in Life with MS

 

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Oh is it ever a new year!

So first, unofficial photo shoot under my belt. Weird. I am now a published writer. Ha! (Having nothing to do with the photo shoot, that was all about my husband. This is the life of the wife of a politician.) Ok, so all I did was write an article for our local town paper. But it’s out! It’s in people’s homes! Why, when I know that this blog has the ability to reach the entire world, am I so excited about an article that only reaches the members of my town? I don’t know. It’s something about seeing it in print. Something about seeing a title in a paper followed by my name. I love it!

There have been many other blogs, articles, that have talked about how people with MS’s life is split into two. There is the life that we started with, and then there is life after diagnosis. I have been thinking about this a lot recently. Yes, I am a little too familiar with some doctors now. But in truth, because of my right eye, I have always had issues. So all I’ve really done is add a new specialty. There are now new tests and I no longer have any issues with needles. I miss having issues with needles. I miss needles not being a common place thing in my life.

However, if you knew me before you may not even notice a change. My husband and kids notice a change, but random people that I see, let’s call them friends, probably wouldn’t notice. I myself have finally come to a point where I don’t see it as a before and after scenario. For the first year, ok 2 years, after diagnosis I was convinced that life would never be the same for me again. It didn’t help that I was on Copaxone, that wasn’t working and I had upwards of 9 new lesions at every MRI. But Tysabri has brought me back to life. No new lesions in 3 years. I’ll take it! Sure I still have issues from the previous ones. Those are things that are as of now unfixable. But I’m positive, I have put myself back out there in the world, my family is doing great, it’s a good new year! Now all I need to do is win the lottery so that I can go back to school. 🙂

 
 

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