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Showing posts from January, 2009

Tuesday Update: 01/27/09

Sometimes a week or so goes by and I’ve not posted anything because, well…there isn’t much going on. Other times a week or so goes by and I’ve not posted because we’ve been so busy I just haven’t found the time…THIS post is the latter. Things have just been crazy busy!! But in a good way, for sure.

We found out last week that my insurance would cover the new medication that Dr. Struck prescribed, only costing us a monthly co-pay which is completely doable, considering the outrageous cost per pill. We received the first shipment yesterday and Matt took his first dose last night. We are anxiously waiting to see if this medication will help the tremor and will definitely keep you all posted! I just can’t say enough about how grateful I am for my job and my insurance…holy cow!

Last week also kicked off what turned out to be a super, busy, fun-filled birthday week! Tuesday was my good friend Gina’s birthday, born just six days before me. So Tuesday night a bunch of us went out to celebra…

Tuesday Update: 01/13/09

Yesterday Matt and I met with Dr. Struck for his regular follow up on his tremor etc. She told us about a new drug which just received FDA approval this past October to treat any kind of involuntary movement. She’s had quite a bit of success with several of her other patients…one of them she said it was like a miracle for…it reduced his movements by 80%! This was very encouraging, naturally and we are excited to see if we can give this drug a try to help Matt’s tremor. HOWEVER, the cost may be an issue. The primary use of the drug so far has been Huntington’s disease, which the FDA considers an ‘orphan’ disease in that it impacts less than 200,000 American’s per year. Because there are relatively few people with the disease the cost of the drug is outrageously expensive…upwards of $50 per PILL!
Dr. Struck and her team went to work right away to try and work with our insurance to see if they’d cover part of the medication. They were rushing around filling out forms, and Dr. Struck…

Monday Update: 1/5/09

Matt and I went and saw the movie Yes Man this weekend. It was a good movie; funny, and full of Jim Carrey as his goofy best-ness, but at the end of the movie I was left thinking huh…there might actually have been a moral to the story! In the movie, Carrey’s character is forced to say yes to every opportunity that comes his way, in an effort to open him up to new things and experience life in a whole new way. While obviously you simply can’t say yes to everything…there is something to be said for saying yes, when you might otherwise just say no. I know I am completely guilty of this – especially these past few years. For the past 3 years I have been pretty well focused on Matt. What Matt needed. Where Matt needed to go. How Matt was doing. What can we do more for Matt…as well as trying to juggle and balance work and running our household. I let a lot of other things slip; my own personal health, relationships…and yeah, opportunities passed me by. I think I was so focused on my ow…