Monday, October 19, 2009

I am Sick & Tired of Being Sick & Tired

Just to recap and get everyone up to speed:
5/26/09 Hysteroscopic Myomectomy
7/6/09-7/24/09 The painful & heavy period from hell!
8/25/09 Hysteroscopic Myomectomy. That's not a typo, I had 2 surgeries in three months time. If only my garden grew things as well as my uterus grows fibroids.
9/4/09 Deep Vein Thrombosis of lower right calf.
9/20/09 I was watching Mystery Diagnosis and realized I have Non-Classical Congenital Adrenal Hyperplasia 9/21/09 E-mailed my Reproductive Endocrinologist to tell her I have NC-CAH.
9/25/09 Post-Op check up & blood work. The idiot endocrinology resident insisted I had Cushing's not NC-CAH.

They sent me to the lab and took 6 vials of blood. And I was given an orange jug for the 24 hour urine test.

10/5/09 Shockingly bad news
Renal Failure
Well I had a complete blood workup done and thats what the results apparently pointed to. My primary care physician told me that I was anemic, had no vitamin D, am diabetic, and apparently I have very poor kidney function. When I asked what that meant she said I was at risk for renal failure. Which I automatically translated to mean I would need dialysis and/or a kidney transplant. I think I went into shock at that point because although normally very vocal, my brain just sort of shut down and I couldn't speak. It was at this point that my primary care physician told me that I should forget about ever becoming pregnant because it would probably kill me and if I lived my baby would be put at risk of various birth defects, such as low birth weight, heart disease, and other things.

When I say I have no vitamin D I mean zip, zilch, nada. She put me on a presciption dosage of Vitamin D, 50,000 iu's twice a week.The average over the counter vitamin D caplet has 400 iu's.

Yes, that's right I am as mouthy and brassy in real life as I am on line. I believe in asking doctors questions. But I was truly stunned.

Not sure about the rest of that day. I know I called my mom on my way home; but she wasn't there. When I got home I just kicked off my shoes, curled up on the sofa in the den, tried not to think about Julia Roberts character in Steel Magnolias, and went to sleep until dinner.

10/10/09 My repro. endo's nurse called me at 2:00 on a Saturday afternoon to tell me they need to do more blood work. FYI - A call from a doctors office on a Saturday is NEVER a good thing.

10/15/09
I go into Atlanta for the bloodwork and this time I write down the test names so I can check them online. Guess what? They are just now testing for NC-CAH. Apparently the 6 vials of blood they took to test for Cushing's all came back negative. The 3 vials of blood they took Thursday were to test for Non-Classical Congenital Adrenal Hyperplasia.

Son of a gun, turns out I do know my body pretty well. Imagine that? After only 43 years I know my body better than some young pup medical resident.
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This was of course in the midst of my computer dying and the Great Georgia flood of 2009. Meteorologists have said that this was not one of those piddly little 100 year floods; but a 500 year flood. Hence there being no previous record of a flood this bad. Seventeen counties have been declared a state of emergency including the one in which I live.
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Also during this time my dads neurologist put him on Mirapex for his Parkinson's Disease. Guess what? One of the side effects of Mirapex is visual, olfactory, and auditory hallucinations! Talk about the treatment being worse than the disease. Mom and I thought "OMG! He's gone senile overnight and it's getting so bad so quick." We didn't know what to do. We finally thought to call his doc as this was a new medication. Sure enough, he told us to cut dads dosage. Literally overnight his hallucinations ended.
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The really disturbing thing is my primary care physician, Dr. Sharon Haynes wait and see attitude about my kidneys and the diabetes. This is serious stuff! My doctor has NOT put me on any diabetes medication or insulin, has not recommended a change in diet AND has not laid out a treatment plan for my kidneys. WTF!?!?! Until a cousin who is a retired nurse, visited me on Saturday, I didn't even know that I should be seeing a nephrologist for my kidneys.

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