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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.

Monday, December 14, 2009

Where are you Christmas??

I need to get something off my chest, to whine and rant…
All of my life I have had battles with depression, and I have one a few with out medication or counseling. The last Christmas that I had a problem with was right after my Grandmother has a stroke a few years ago; and before that one it was when My Grandfather (on my Mom’s side) was dying of cancer.

This Christmas will be the first with out Grand Donald (on my Dad’s side); we are loosing my Grandmother’s house (she bought it the year I was born); several people from the cystic forums have been sick and we have lost some too. I am still not feeling well; I don’t think I have felt good in a while. Maybe a day or two here and there; but this year has been an eye opener for me. I don’t think my life is worthless or anything and I am not suicidal, but I just can’t get myself out of this funk.

Now Christmas is coming and we are broke; my usual answer to this would be “so what we have each other”. This year…I can’t seem to get it out. It seems to get caught in my throat. I don’t want to be around people, well truthfully I do…I just don’t feel like I’m good company. I have to prepare myself, go over conversation ideas in my head…normal stuff I would have talked about before all of this crap.

On Thursday I go in for my second EGD, and I’m having a difficult time finding someone who wants to go with me. I guess I can understand; who wants to take off work to sit in a waiting room all afternoon and then help a sedated Chrissy into the car? My Dad said he’d take me; but he had a cow when I asked him about it. I need someone who can come back to recovery and listen to what the doctor says because it might be important. So I’m a little concerned about it. Wednesday my piano is being moved from my Grandmothers house to mine. My Aunt is helping to cover the cost, and the rest of the money is coming from our Christmas cash. Frank and Kate knew I’d be devastated if I lost the piano and both thought this was worth it. I love them so much.