Friday, October 16, 2009

Checking In

IVIG #10 was blessedly uneventful. It took several hours and my nurse commented on how, "This process really beats you up!" as she observed the dramatic change from the "bouncy" (her description based on my generally smiling personality, not my physical feeling) happy me, to the girl who couldn't even walk across the room unaided, within 20 minutes of the start of the IV. An hour into it I was so miserable I was actually moved to the only bed in the infusion room because I didn't have the strength to "sit up" in the recliner anymore.

But thankfully I had no dramatic reactions afterwards, like I did after the 9th infusion, so it looks like adding zertec to the mix was helpful afterall. I'll have my 11th infusion two days from now, then see one of my specalists, Dr. Peterson next Tuesday. It has yet to be decided if I will continue with another round of infusions after #12 or not. I have very mixed emotions about what I hope the final decision will be. It has been a hard go, but if we are going to go for another 12, I really would rather just keep moving forward now, with my existing PICC line and established schedule, rather than having to try to start over sometime down the road. We'll see what the experts say...

I still haven't really recoved from our RV trip (or from the trip to Stanford before that) and it took more out of me that I thought it had in the beginning. I'm hurting a LOT the past couple of weeks, and while last Monday was amazing good (typically the day after an infusion is really bad for me), I'm not seeing a huge bounce toward feeling better toward the end of the week these past two weeks, as I had been seeing in prior weeks. Travel just takes a whole lot more out of me even than I realize when I first get home.

Prior to the trip, I would typically have a very hard Monday, so-so Tuesday and Wednesday, then often start feeling fairly decent by Thursday or Friday and on through the weekend until my next Sunday afternoon IV. The past two weeks, Thursdays have actually been my hardest days rather than the day I start noting improvement, and today I'm still really dragging. It is so discouraging to feel that I can never get "caught up" or "rested up" enough to get to a level playing field. I have been fighting a fever all week and just plain feel rotten!

My doctor in Stanford wants me to come back there for bloodwork next week and that simply isn't possible. I cannot even begin to imagine how I could cope with another trip right now and fear it would land me in bed hard for a long time to come. It's crazy that Dr. Montoya in Stanford tells me it is critical to "reduce stress" (including physical, emotional, mental...) then my insurance dictates that he's the only specalist they will cover and it takes a 3 or 4 day trip for me to see him (1 to travel, 1 to sleep once I get there, 1 for the appointment itself, 1 to travel home again), not to mention the physical aftermath of trying to recover from the trip. The whole insurance situation and denial of coverage for my local specalist itself is pure stress! RVing was a much more gentle option for me than a standard car trip, but as I'm finding out the hard way still two weeks later, still not the answer I had hoped it would be.

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