3.5 Year Update

Feb 11, 2010

Well, another half-year has passed and I'm still around, my weight is blessedly stable, and I'm still posting actively on this board and in love with my DS.    After 2.5 months of twice-weekly Vitamin D infusions, my D is rising (30 at my last blood draw), my calcium is (8.7 as of yesterday) NOW in the normal range and my PTH is heading downward.    I am a bit of a guinea pig in the Vitamin D infusion world; there is only one other individual that I know of having them, and she too is seeing good results.    We are both hoping that this experience can help the other less than 1% or so of DS'ers who are stubbornly malabsorbing D in any quantity.    I suspect that I might have had a severe D deficiency pre-op.    My values are not rising as quickly as I'd like them to be, but my doc and I have learned that D is absorbed optimally through the gut, since mine is not being absorbed there, we have to turn to the next best thing.    My hope is that I will eventually be able to have IM D injections.   Once we get my D up to a high level, perhaps in the 50's, then we'll play around with injections to see what they do.     Going to my local cancer center twice a week for infusions is a bit time-confusing, even though I'm only there for an hour maximum, it's still just one more time commitment that I'd like to not have.    The staff at the infusion center often ask me whether, knowing I'd have to go through twice a week infusions, perhaps for the rest of my life, would I still have this surgery again, and my answer is always, without hesitation, HELL YES.    I was far, far, far more miserable physically impaired, uncomfortable and emotionally insecure as an MO individual than as a thin person having to be poked with a needle twice a week.   The inconvenience is all relative.
I can eat a LOT these days - I thank God for my malabsorption.  The usual suspects still cause me gas - white flour, too much sugar and mallitol.  Other than that - I eat a tremendously varied diet, still placing the most emphasis on protein.    When I see the scale begin to creep upward a bit, I cut back on carbs and it goes back down.   I'm wearing the same pants for the third year in a row.   I'm getting rather bored with my wardrobe these days!   Yes, yes, yes, as so many say - I'd have the DS once a year just to feel the way I do.    Good luck to those just beginning on this remarkable journey.  Please PM me if you have any questions.


About Me
Ludington, MI
Jun 17, 2006
Member Since

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