Thursday, July 23, 2009

Everything's relative

This week has been a bit of a motivational challenge on many fronts. The increased dose of Prograf has taken its toll and I've put up the white flag. That slow, dopey feeling too much tacro causes has permeated every aspect of my life for the last two weeks. I've spent entire days unable to finish a single project and it's driving me insane.

The little schedule that I put together for myself has fallen by the wayside. The dust building up on the window blinds has won a temporary reprieve. I wake each day feeling great and ready to take on the world, except that when I start to vacuum or mop or whatever, I run out of steam as soon as I finish the task. It's not like that tired feeling you get when your disease is active. It's more of a stamina issue. When I was taking 0.5mg of Prograf each day, I was able to finish almost everything I set out to do in a day. Now I'm lucky to check one task off.

Talking to me is a little bit of a challenge since I start to zone out almost immediately. I hear you, I swear I do, it's just that my mind starts to wander just as you get to the meat of your point and off-kilter topics like peep dioramas and their impact on the environment supersede the really important things you're saying. Chris is constantly having to repeat himself because of this. While you're talking about socializing medicine, I'm composing a manifesto on the importance of twizzlers to the movie watching experience. Help!

Hence, the lack of blog postings. I can't hang onto a topic long enough to write about it. I had to promise myself that I would write something today, then I had to guilt myself into doing it. I love to write! Writing has never been a chore and yet that's how I'm treating it. It's right up there with scrubbing the baseboards.

I've learned that however you wake up feeling, that's your new normal. A month ago I was able to pass as a relatively functioning adult and I was feeling pretty smug about it. Right now, I'm Zippy the wonder slug. That's today's normal. It is driving me insane, but I accept it as part of the transplant recovery process. Next month will be different, as will the month after that. At least I can look forward to a future.

As for the here and now, I've still been having problems with GvHD of the skin. Dr. K. had a consult with Dr. H(dermatologist) at MDA and they finally settled on a steroid lotion to be used on my scalp. I can't remember if I've written about it previously, but my scalp has been really dry and flaky thanks to the new immune system. Since my hair has yet to fully grow in, the flakes are really prominent, as are the dry patches. I've been applying the medication to my scalp for the last week and it's really helped. My scalp has stopped itching and the dry patches are starting to heal.

Yesterday, the palms of my hands and the bottoms of my feet started to itch as soon as I woke up. From experience, I know that scratching only intensifies the sensation, so I try to abstain for as long as I can. Unfortunately, the itching became really unbearable at one point. I was driving to the vet's office when the soles of my feet started to really itch. On a scale of 1 to 10 it was a 9. It went on for about fifteen minutes before I considered pulling over to have a good cry over it. It was that bad and I couldn't get any relief. I decided crying wouldn't help, so I gritted my teeth and resolved to go about my day as if nothing was happening. I managed to finish running errands and get home in one piece. Roughly two hours after it started, the itching finally went away. It's been flaring up off and on since then, but not to the same degree.

At the moment, the big toe of my right foot feels like I've stepped in live embers. I'm trying to ignore it since there's nothing to be done for it. At least the new immune system is doing something.

Life continues to move along and I'm just happy to move along with it.


Ronni Gordon said...

Don't they give you anything for the itch? I took Atarax when my rashes were really bad; of course the problem is it always knocks you out. Sorry about the fatigue and mental fuzziness. As you said, it will pass. Sounds like you are going with the flow as much as possible, but it sure is hard. You are a trooper!

PJ said...

I hear you about the focusing issue. It's so frustrating. Don't forget to make anti-lists, too. Haven't had the itchies (yet), and I hope you get some relief from that soon. Thinking of you during this wet wild New England summer while you roast in BR.

Ann said...

Ronni-I'm being stubborn and trying to tough it out. There's a perverse little voice in my head chanting, "If you can feel the GvHD, then you don't have to worry so much about the cancer." I think I've reached my limit with the itchies and will ask for atarax, though.

PJ-Roasting indeed! Maybe we could work out a transplant timeshare scheme so we can trade off on some of this weather. Funny that you mentioned the anti-list. I made a list of things that I was not going to do yesterday. I managed to check everything off on that one with no problems. :)