Thursday, April 24, 2008

One Step Forward...

Bah. The GVH came back on Monday. That was me at 30mg of prednisone for a week--and BLAM. So now I'm back at 60mg and also on another new immunosuppressive in order to attempt to transition me from the pred without having another flare. So here's your blog post at 4:20am. I've been up since 1:30. Awesome.

Whenever I'm on a new drug I do the full google search on it to get all the side effects in my head so I don't flip out if all of a sudden I feel, say, dizzy for "no reason." So I was looking at the one for my new drug: it causes lymphoma in 4% of people who use it! Now THAT'S a drama I don't need. And, even better, it causes DIARRHEA! That's funny: take this drug that causes diarrhea in order to fix the problem that is causing you diarrhea. It's a little silly, but at the same time, when you're in the situation I'm in you just have to thumb your nose at the lymphoproliferative cancer warnings and say "whatever."

So now I think I'm on more immunosuppressive drugs than I was 3 months ago. Evidenced by the fact that I woke up yesterday with thrush in my mouth. It's basically a fungal infection that makes your tongue white; I had it, like, every day post-transplant till Day 80, I think. So I am also swishing and swallowing the sadly-familiar very nasty elixir to get rid of that. And the new drug has given me mouth sores, so eating is a wee bit of a challenge because everything kind of feels like I'm squeezing a lemon on a cut.

So I'm a bit pissed off at my situation and just so OVER this whole year already.

At the same time, good weather has finally arrived in the Great White North, so sunshine and good times await me and Bambina out of doors. She was given one of those kiddie motorized golf carts by her GiGi, and it is her absolute pride and joy. It goes about 3 miles per hour and she is just all about taking that thing out for a spin every chance she gets. The best part, in her mind, is that it has a little cup and snack holder. So I put her thermos of water and a paper cup of cheesy chips in it, and she was tickled pink to be driving around WITH SNACKS! Then she pretends to be putting in a CD. She'll ask, "What do you want to hear?" Then when you answer she'll say, "Yeah, I don't have that in the car. But I do have The Traveling Wilburys. Interested?" Sure, I'm interested, sweet girl. Play me some Wilburys. Which involves her pressing a pretend button and then wailing loudly a la Tom Petty, "Congratooolaaaayshons for breakin' ma heart!" Believe me, there's nothing funnier than a preschooler in a Del Boca Vista golf cart offering you a bluesy mazel tov on "tearin' it all apart..."

And speaking of cars, she is just one inch away from being legal in a big girl booster seat rather than the car seat she's currently being stuffed into. She wants into that seat so badly, but for a wee petite pudding those inches just don't come quickly enough. She was a decent-sized baby at birth but is, we think, in the ballet dancer's body she is going to have for life. She will probably end up being about 5'1" and 102 pounds fully grown--and that after an all-you-can-eat bender at a Shoney's. Coming from a family of proud heavy people, it sometimes pains me to see her so tiny because all those "food is love" beliefs are in my head and soul from generations of Scottish love. Not to mention that in my family you were always asked if you were sick if you were not a couple of pounds overweight, that good health meant having a little somethin' extra, which I don't necessarily disagree with when looking at painfully thin "healthy" people. So some part of me deep down feels like I, as a good mother, should be force feeding my kid to fatten her up. Luckily the sane part of me (with a helping nudge from the BBDD) just allows her to be who she is. Even if that means she won't see that booster seat till she's 7...

Okay, I'm going to try to sleep now. Hah!


Utah Savage said...

You trip the light fantastic in this high-wire act of bursting with healthy thinking and actual illness. You're a brilliant writer e. I live for your posts. Often makes my little brush with the ups and downs of bipolar disorder seem like such sniveling bullshit. The only thing that puts my life at risk is ME.

The adventures of Bambina are a delight to read. I live on a street with 16 kids under the age of ten. (It must be the drinking water.) I love the sounds of children at play. I have nminated you for the E for Excellent award. The E being most appropriate for you.

I'm going to a matinee today, but whenI get home I'll try to figure out how to get it to you.

Vigilante said...

Well said, Utah.

Anonymous said...

If it makes you feel better-coming from your big sister...your 11 year old neice is still in a booster seat because she is small :) She was in a car seat till she was 5 and still legally needs to be in a booster seat-so don't sweat it. By the way Hanna is eating us out of house and home and still hasn't gained a pound!