Monday, February 17, 2014

"You'll get through this", God is good. WORLD Meeting.

Last week (2 wks ago) I had the botox at UW Rehab Med which went ok and something I hadn't thought of ahead of time but the Coumadin (INR) level being to low was actually a good thing in this case as I had minimal bleeding after the series of injections. I am to let my PMR dr know this week if it helped or do I think it needed a higher dose/more injections. Really I think the one area that has been very uncomfortable is mid-back which is intermittently an issue for me (and for which I need to go back to PT) this area the muscles just get overly tight (which this dr commented on) and fairly uncomfortable.

I missed ERT last week and this week due to weather we are doing it on Thurs instead. I am not sure if Cardiology will be ok (hopefully) with my just doing the Labs then for the Coumadin level. I am not entirely sure but think it may be somewhat to low though closer to our target now.

Unfortunately I wrecked my car last week (driving in to the sun, the other driver was backing up in the road on the County Rd/Hwy and preparing to then back in to her driveway) which I had a little affect on the very muscle area which we did the botox on. This is the general area which I had surgery on some wks ago (the shunt surgeries) so between all these things I will be happy to re-start PT as that makes a big difference. This Physical Therapist does a hands on approach, manual therapy and for which my PMR dr really advocated I restart as she was taken aback by the muscle tension/tightness/almost like knot in mid-spine. It has been some 6mo or more (pre-OHS) since I've done this PT. The Cardiac Rehab PT had called to ask if I wanted to come back but I honestly think I get more out of the hands on PT (manual therapy) than I do the Cardiac Rehab and this is as well much closer.

Regarding my car it is totaled and had to be towed to the local tow yard where I live and then my Dad and brother took it to my brothers house who is stripping some parts off of it for his own car. Unfortunately one of the 2 brand new tires I had bought just the wk before was ruined but I have 1 new and 2 fairly new tires for the future that will fit my new (used, new to me) car which is an Olds Alero and I bought Sunday (yesterday). My other car was an 01' Grand Am. Gas mileage seems to be fairly similar between the 2 (around 32 for P-GA and 29 for the Alero from what I read online. I had purposely been looking only at 4cylinder engines due to wanting decent mpg.
I had some savings from my part time work w Gene Spotlight and as well have some other money so I was able to pay for this car outright.
Needless I am thankful I hadn't yet bought a ticket to go to Boston even though it makes me sad to almost certainly miss the Marathon now. Sometimes life stinks!
I'm sure I've written about this before but I often get asked how I deal w all the MPS/health stuff and I usually answer that you just do, what choice do you have? I don't think God choses purposely to make one person over another have a more difficult life so I try to just (as I've often said) take things medical wise a day at a time. At book club (church book club) I was asked last week "Don't you ever get mad at God?" and I guess I honestly could answer I didn't think so, or atleast not that I could remember but I do definitely struggle with some things sometimes (like any one of us!). Perhaps appropriately our book club book is 'You'll get through this' by Max Lucado.

The World Lysosomal mtng was good last week, I flew back from San Diego on Fri and had decent seats both to and from CA which always makes flying easier! I learned some, saw friends, worked at our Gene Spotlight booth in the exhibit room (we where signing up interested Researchers for potential MPS I grant proposals). I also had meetings w/my employers with Pharma people, other company Reps (met the Dad of another Lysosomal family and for which the movie 'Extraordinary Meaures' was based off his family. That was kind of cool and he seems like a very down to earth type of person who just wants to see better treatments for his 2 kids and for our disorders. He is a CEO at a Pharma company. I also had some spa time (massage, nails) as a "treat" from my employers for our work and dinners which where lovely. I am always happy to be home but I do miss the warm weather in San Diego! It is (big surprise) snowing like crazy here today so missed ERT again but tentative plan is to make it up Thurs.

I guess really there isn't a lot else going on, will update sometime soon.
Thanks for stopping by,


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