Wednesday, May 18, 2011

Life was OK...Now not so much...

It's been a while since I have posted anything because life has been pretty good. Busy, but good. Tim has been going through Physical Therapy and doing quite well. He can walk around the porch for 10 minutes, take a break and walk around again for 10 minutes. He has a brace to wear and uses a big walking stick for support which has really helped him get more miles per gallon out of his walking distance. As a back up, we purchased a GO GO Elite Scooter so we can go and do the things we want without cutting trips short or just not going. What a life saver at the race ; )
So today we found out that Tim is positive for the PML antibody. As a recap for those who don't know...
PML is a bad deal (brain infection), a risk/ caused by taking Tysabri (his monthly medication infusion, been on it for 2 years). Recently they came out with a blood test that looked for this PML antibody. People that test positive are either encouraged to stop taking the Tysabri and go on an oral medication or stay on Tysabri and just receive it every other month.We chose to stay with the Tysabri and just have it every other month.
Something else that changes when you are positive for PML is now he has to go and have an MRI every 4 months, instead of yearly or every 6 months.
What all this means...Not a damn thing! Tim is still Tim, making jokes and giving me a hard time about my driving, cooking, silly things in general. We still live in a beautiful place and enjoy our life together. We have wonderful friends both up North and here in the South that we wouldn't trade for anything. We may have to go to Dallas for more MRI's but the infusions cut in half so we are about even on mileage. For a minute (ok, a whole day and night) I was worried and stressed and wanted to climb back in control freak mode but after 2 hours in the car listening to "the doctor" (aka Tim), things are fine and we couldn't be happier to be home, on our porch enjoying the wonderful Texas day and the time we have together.
So I got to vent and all is well. If you gain something from my bloggings (ramblings) then I guess I feel a little better from that too.
Love and peace to everyone worried for us. We love you all!

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