Wednesday, July 6, 2011


Just a quick note - I talked to my insur case manager last week and while I knew our Dean POS insur was approved and that my own policy under my parents (I am past the govt coverage age but Dean has made an exception last year when BDSSA first switched to them. Anyways last dec they extended the coverage another year to december when i'll fill out the same paperwork. The aldurazyme in the mean time is covered for another year and all contracts worked out and signed with the appropriate companies with shipments continuing every 3 weeks with a 4 week supply.

Otherwise things are improving - as I wrote last week I am back home and enjoying this - the most bothersome symptoms at this point would be bladder although this is still improvd and the numbness in some parts of low back and leg but yet muscle spasms in calf and ankle which occurs with walking, sitting, sleeping (constantly wake up) and the deep nerve pain that runs from buttocks to ankle with any period of sitting be it 10 mins or longer.  I follow up with my pain mngmt dr for normal follow up on thurs and she I am sure will have some insights on this as the lyrica alone isnt doing it, I had been using the lidoderm and flector patches on low back but bc of skin sensitivity I break out in rash, hives, etc and so stopped this and will see about he topical gel or cream form of this med. and cover with a different dressing one of my infusion nurses gave me.

Otherwise this past weekend despite being exhausting was very lovely with my older nephew spending sat-mon and then mon we also had a get-together/b-day party for Quinn who tunrs 9 on the 7th  Lots of swimming with my parents pool hovering around 80degrees - for my this pretty much was just standing and walking around in the pool or watching Zander as he swam back and forth while everyone else horsed around. Was nice.

More soon -


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