Wednesday, February 8, 2012

Things we all can agree on...

#1 - being healthy is great
#2 - doing your taxes is kind of a drag
#3 - a sunny afternoon after a morning of fog and clouds feels like a gift
(feel free to add to this list - just a couple of things that popped in my head today)

Update: I'm 6 days into my guinea pig gig - so far no side effects from the drug that I can identify. Yesterday I felt a bit yucky, but I still have days like that at this point. I tell you what though - I have to hurry and gulp down the 7 (yes SEVEN) tablets because they taste terrible! I think they are pretty acidic.  I looked up the side effects for this drug before I started (Kuvan).  So funny (not really, but kinda) - some significant percentage of people in the PKU clinical trial had nausea as a side effect. 

oh, and vomiting too. nice.  

So that is why I'm so relieved to feel pretty okay so far.  After 4 weeks I switch to a higher dose though - 14 tablets at a time  (that's right - FOUR plus TEN = how many pills I have to gulp down). Keep yer fingers crossed that I don't start barfing at that point.  If it seems odd to anyone that I'm testing a drug that should help my stomach function better but that might make me sick. Well, join the party! 

Speaking of things that make me barf. I realized yesterday that one reason it's hard to identify a specific trigger for the extended episodes of vomiting because so many things will make me nauseous and often result in me throwing up. Usually just a one-off thing - or at least short-lived.  Jet-lag (check), migraine (check), too much stress (check), riding in the back of a cab with a terrible driver (check and double check).  I'm serious - I have had to ask a driver to pull over and let me barf in at least 3 different countries!

Update #2: RE: my healthcare"team" composition...
I decided not to divorce my endocrinologist and dump him for someone new. I've been seeing him for over 20 years now and I went in to see him recently thinking at least I should talk to him in person before going to another doc. Then I changed my mind. I don't want to train another doctor right now. I'm already seeing too many new doctors who don't know me. 

I made an appointment with a hand surgeon for my Dupuytren's yesterday (or maybe monday)...he's located a bit farther away than some of the other options so now I drive all the way down to Stanford for my GI doc (45 minutes in no traffic), out to Orinda to see my endocrinologist, and up to Marin to see this hand surgeon. So much for centralizing and simplifying my medical/health team!

If you're wondering about Dupuytren's, don't worry - I'll write a post about just that next time, what I'm hoping the doctor can do for it, and include a picture of my hand. But for now it's time to sign off. I've been sleeping more, and I think that is a good thing. 

#4 - sleep is good.

No comments:

Post a Comment

Awesome people speak up!