Tight as a Tick and Ready to Explode 2008

Tight as a Tick and Ready to Explode
Posted Jan 13, 2009 4:52pm

Sorry it has been awhile since my last update. I have not felt motivated to write. I am so extremely swollen and tight from my prednisone, I can't stand it. When I smile I feel like my face is going to crack. About the only activity I can stand is laying in bed having hot flashes (they are so bad), sleeping, reading, (when I can focus)watching T.V. and spending quality time with the dogs. They like it when mommy is lazy.

I have been having extreme discomfort in my feet. They feel swollen but don't look it and when I walk I feel like they are getting ready to split open. They just burn and ache. My hands started doing that yesterday, so typing is not too comfortable, but I felt the need to update everyone on what is going on. I have also have a constant headache and achy muscles and joints. I think the combination of all of the above is causing me to by really tired and somewhat cranky. I keep thinking a hot shower or bath would really help, but for some reason the hot water in MY bathroom doesn't last long. I don't get that. Cheston's shower is fine. He said it was a user error, but it is clearly not. Something else to get fixed.

I went to the doctor on Friday and not much has changed. He, as well as my hemoc/oncologist are still undecided about what it is exactly that I have. And here I thought they figured it out. The tests they were waiting on to confirm APLAS, in their eyes, came back negative. My rheumatologist is positive it is APLAS and not vasculitis, so we are in the same place as before I went into the hospital as far as diagnosis goes. Well, not really since another possibility is on the table, but it feels the same. At least the course of treatment is the same. I am not sure I could have picked between two different ones. I am going to see a doctor in Chapel Hill that I saw once before that actually specializes and is on the nation board for APLAS. I am also going to see someone at Mayo Clinic that specializes in vasculitis in the kidneys. Hopefully that will either confirm one or the other or give us some ideas about long term treatment.

I go tomorrow for chemo again, so keep me in your thoughts. I hope things go as smoothly as they did the first time. I don't want to get sick. Cheston is going with me tomorrow, Dad is coming into town to stay on Thursday and Mom is taking off Friday. I have two more doctors appointments on Friday. I will let you know later this week how that goes.

I am trying to figure out if I can send individual people messages on here. I know people send me private ones and I would like to respond to you privately, but I can't figure out how. I know I keep asking people for reading material, thank you the ones of you that have offered suggestions. I just finished reading the Twilight series over the weekend, and I have to say that is one of the BEST series of books I have ever read. I will be re-reading them. I had heard a lot about the movie and I really didn't think I would enjoy them, but I got really, really into them. They just pulled me in and drug me away. Beautiful books I think.

I hope everyone has a good week.
kej