Thursday, May 27, 2010

running out of gas, or maybe not!

Once again I am frustrated over hearing "there's nothing we can do, deal with it." I know this is true, but you can only say that for so long before things to happen and body parts start to fall hair...and a few other things! My awareness bands for all my various awareness things...can't wear those anymore. Ya know? Like Blue Lightning, if I ignored a problem too long it would only makes things worse and he would start making a lot of noise. I guess that's what I'm doing! I'm not letting them ignore this and am making some noise! Unlike Blue Lightning though, I will never run into the problem of running out of gas! ;)

So...I called my PCP's office today for an urgent appointment for Thursday at 1. I am planning to get my sandostatin injection for my dumping syndrome, but I am going to talk NUTRITION and what is the solution when I am so sick, in pain, and cramping on just a few crackers, an egg, or some cheese? My body feels it...I ache all over, I'm weak, short of breath, and have chest pain and tightness. I'm generally weak all over. I'm talking pain at times that has had me in tears and yelling out....something I rarely do. I'm not sure what my options are...TPN is out because of my high infection risk, eating is not working...that I've been trying for months and months and have just failed. I'm not sure Pitt has dealt with someone with two opposite conditions so I'm kind of just a test and just figuring it out on my own. The dietitian hasn't been helpful...she's tried, but everything that's ok for one thing is nasty for the other now. I used to handle eggs ok, but now they affect me one way or another. I don't know if my gut is screwier, I am personally screwier, or my meds are just all messed up! I do know that long periods of not eating well makes the digestive problems worse, but what do you do??? I'm always telling people to keep eating as much as possible to prevent that, but, like me, the response always is...easier said than done! I know that. Why do I recommend things I know are ridiculous? I must think I'm a doctor! HA! Only I have the first hand experience...I should know better! It is the's just kind of a stupid truth to know because it's not like there's much that can be done about or pain and then eat again? It's like subjecting yourself to torture...but oh how I love food!

I guess over time my appetite has disappeared which is some ways a blessing because I am not so mentally tortured. The fact is that if I did have an appetite I still wouldn't be able to eat any more. I think I almost always had an appetite even pre-transplant, but now, even on steroids, there's not much there except the occasional craving for something during a time when my gut feels ok...but most of the time I'm a queasy mess and that prevents a desire to even look at food.

I often think, oh, my gut is ok right now, I won't get sick if I eat something...then I have a bite of something and I know that my gut isn't ok after all...and very quickly most of the time. Even just a sip of my Crystal Lite or diet soda can make me sick for a really long time...and THAT kills my appetite for anything's good to try things to make sure that I'm not just in a slump...a one year slump (?) but I try on the cautious end. Nope. No slump! Something has changed. I just wish we knew what it was. The unexplained is pretty maddening! The good thing about being bald? I am not pulling my hair out over all of this...and it's so darn easy to take care of...a simple washcloth does the trick if I don't feel like I have enough energy for a full shower. One of these days though, I won't mind pulling out the mop! :)

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