A day to forget

Today is a day to just forget...the inefficient lab did not have my labs completed yet from Monday!! And the cultures from the derm on Thursday weren't done yet either...so I wait.
I'm still having a lot of pain with bowel movements and hopefully the cultures will indicate the cause of that. It's been a really tough day. I feel worse than I have in a long time with a really bad headache and pain all over my body. Tylenol and narcs aren't touching it. Because of the headache, I also have a lot of nausea. My hands have been cramping up and getting stuck too which could indicate an imbalance in electrolytes or be part of a possible autoimmune condition we have yet to find. I'm exhausted, but having trouble sleeping because of the headache, pain, and overall discomfort. I'm a little nervous about what my crit level will be this week though. There will definitely be lab results tomorrow...if not, someone is getting shot...so Rachelle, if u find any more strange blood in your office...

We really have to get this under control. It amazes me that I am on so much iron, weekly injections to boost my counts, copper to help me absorb iron, had an iron infusion three weeks ago, and my counts are still so low. It's not that it's all that uncommon for small bowel transplant patients to have this problem...the question is...why now? Other than on occasion, this wasn't a big issue for me until this past August when for some odd reason my copper levels were dangerously low preventing the absorption of iron. I didn't even know our bodies NEEDED copper?? I wasn't even on any iron supplements at all for a year. Now that the dumping is better controlled, I'd think my absorption would have improved too...??? I am able to be less active now than a year ago...it's not supposed to be that way!

Actually, menatally I have improved over the year. I am thinking more clearly overall and able to talk, carry on conversations, learn, understand, and concentrate better on things with the adjustment of some of my meds, and my true personality comes out more frequently now (except on really bad days), but physically I am able to do less. I can be thankful for the one...I think the mental battles are far more challenging to deal with the physical ones, but I have at least three big events for G-PACT coming up this year that will require travel to DC, NYC, and Chicago with significant physical activity, so I hope to get the physical side on the up so I can be as active as possible in all our activities!

I'm signing off to watch more ALF and sad that I'm almost on the last DVD...

Hopefully I will have some news to report tomorrow.