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I am a wife and mother who also has cystic fibrosis and a mitochondrial disease.

Monday, December 28, 2009

In the dark and pissed off

So my GI called this morning my test results are back; and there are still no solid answers. All biopsies came back "within normal limits" except for a polyp removed from my colon. The Dr had called it "benign", and today they called it precancerous. I'm waiting for a call back to find out which one it really is. I always thought they were two different things, but as of right now...I'm not too sure. I'm supposed to get another colonoscopy done in 2014.

As for the biopsies of my small intestines...well they were apparently "within normal limits" also. What does that mean? Apparently they have ruled out Celiacs disease, and are unsure of what could still becausing my malabsorbtion. At this point the doctors want to do a few more tests and continue with IV therapy. I can't do it anymore. I'm out of money and short on hope these days. Before I was diagnosed with cystic fibrosis I was frustraited, I was sick and I had no reason for it all. When I was diagnosed I was relieved to have an answer. Now I feel as if I am going through it all again, only this time I get to drag my husband and daughter down the "unknown" path.

I just feel overwhelmed. I mean why can't they figure out what is going on? When I don't get IVs my CK goes up; when it gets high enough it causes kidney damage. When my vitamins and minerals are low I'm tired, get headaches, muscles cramps, get confused and forgetful...I just sometimes feel as though I am being set up to fail. With the CF I at least know what the possible outcomes can be, with my mitochondrial mutations...I have no clue. I ask if the malabsorbtion has something to do with my "unknown" mutation and I get told, "maybe". Why doesn't anyone care? I thought with a new mutation maybe I'd get some attention for my other problems... HA...
What the hell was I thinking. I'm not upset that they don't give a sh*t about what happens to me; but rather that my husband, daughter, friends and family have to sit there and watch it all. I'm sure they have all at some point questioned the validity of my problems; it's not like I have any answers. Hell even the GOVERNMENT FUNDED hospital isn't interested in figuring me out.

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