A quick FRUSTRATING update!
Posted by Kaycie and Charley at 10/25/2008 11:09 AM and is filed under uncategorized 
Stuck....in St. Louis. Sounds like some really bad crooner song or something! Nope. It's us, but with great company!
So, on Tuesday, they pricked me, poked me, stuck stickies on my dry skin and ripped them off, took my "samples," and asked me questions until I was blue in the face. Rushed all my results off to the pharmacy that evening and Wednesday came, Thursday passed, and on Friday morning I called. "We're just waiting on the stool sample to come back." Are you serious?? The one test that about made me puke and now it's a reminder of WHY I couldn't get the drug on Friday? Ugh! Oh well, I'll get over it. But, we're still quite frustrated about it all, to say the least.
The good news? We're staying with great family. Having a blast talking about all kinds of old stories. Addy is having a ton of fun playing with Abby & Reagan (her 22mo old twin cousins - I don't know if it's 2nd, or 3rd or something like that!). And, I'm not joking about their names. I HAD NO CLUE that was their names when I named the girls. Until their mom emailed me and I went in my head "Oops." I'm not one to steal baby names! Addy was a done deal, but Reagan's name was in the air. We'll leave it to divine intervention at it's best! What else can you put that on? It's been fun, and with the extended stay, we think we're going to take the girls to the pumpkin patch tomorrow and they have matching outfits, no joke! It'll be the cutest photo ever!
Well, I'll update more later, but yeah, right now, frustrated and enjoying some laid back times.
The good news is that the 6 tests are all fine and my GI doc took one look at my pain/symptom/# of bowel movement sheets and said "Your on 30mg?" puzzled...and said... You pretty much qualify based on that. I just hope I don't run out of pain meds. I've had a few bad spells here...
Oh, one last thing. They dropped a bombshell on me... I CANNOT taper off steroids after the infusion. I have to STAY at the same dose for 12, yes TWELVE more weeks! AWWW!!! I want to scream, but oh well. 12 more weeks is less then 1/2 the time I've been on them already, but frustrating to say the least. I just hope my weight gain stabalizes....that's the worst of it in my mind right now... oh and the insomnia, but I have Xanax and Ambien to help with that!
Gotta run this time....
So, on Tuesday, they pricked me, poked me, stuck stickies on my dry skin and ripped them off, took my "samples," and asked me questions until I was blue in the face. Rushed all my results off to the pharmacy that evening and Wednesday came, Thursday passed, and on Friday morning I called. "We're just waiting on the stool sample to come back." Are you serious?? The one test that about made me puke and now it's a reminder of WHY I couldn't get the drug on Friday? Ugh! Oh well, I'll get over it. But, we're still quite frustrated about it all, to say the least.
The good news? We're staying with great family. Having a blast talking about all kinds of old stories. Addy is having a ton of fun playing with Abby & Reagan (her 22mo old twin cousins - I don't know if it's 2nd, or 3rd or something like that!). And, I'm not joking about their names. I HAD NO CLUE that was their names when I named the girls. Until their mom emailed me and I went in my head "Oops." I'm not one to steal baby names! Addy was a done deal, but Reagan's name was in the air. We'll leave it to divine intervention at it's best! What else can you put that on? It's been fun, and with the extended stay, we think we're going to take the girls to the pumpkin patch tomorrow and they have matching outfits, no joke! It'll be the cutest photo ever!
Well, I'll update more later, but yeah, right now, frustrated and enjoying some laid back times.
The good news is that the 6 tests are all fine and my GI doc took one look at my pain/symptom/# of bowel movement sheets and said "Your on 30mg?" puzzled...and said... You pretty much qualify based on that. I just hope I don't run out of pain meds. I've had a few bad spells here...
Oh, one last thing. They dropped a bombshell on me... I CANNOT taper off steroids after the infusion. I have to STAY at the same dose for 12, yes TWELVE more weeks! AWWW!!! I want to scream, but oh well. 12 more weeks is less then 1/2 the time I've been on them already, but frustrating to say the least. I just hope my weight gain stabalizes....that's the worst of it in my mind right now... oh and the insomnia, but I have Xanax and Ambien to help with that!
Gotta run this time....
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