I started last November with weight loss, and a huge place on my lower back that was growing fast. I have a pain Dr. and he took one look at me and called my GP and told him he thought I was in big trouble, who I had an appointment with the next day. Within 2 weeks I was in for surgery and that was just a fatty tumor, but the surgery should of never happened, my gland Dr told me if my cortisol had been a point lower I would of died on the table and there would of been no bringing me back. And my GP and surgeon had all the blood work and knew what the readings were.
At this point lets go back to 1988 when I was shot in the back of the head, point blank range, with a 38. Wonderful ex, while I was in bed asleep. One of those if I cant have you no one will.
Well I lived in KY and they flew me to Vanderbilt. Who saved my life, rebuilt the whole left side of my face from a pic and after 11 surgeries and many Dr's I felt like I had lived for a reason and life would be good.
Within 2 yrs of all of this I had 3 lower back surgeries and they said it was caused from so many steroids, and my bones were brittle and then the gall bladder went and many more broken bones for no reason, other than brittle bones. And I knew I could live with that.
RSD set in. From the left hip to the tip of my toes on that side and from the hip to the knee on the right side. No feeling when they zapped me with all the electrical hits from a test. And I was told I was in big trouble. Constant pain, day and night, I can not raise my toes on my left foot, if I raise my foot they curl under, so I trip a lot and spent 6 years in a full leg brace, with a cane.
I decided no matter what they said, that I had to get some use back out of the leg and started slowly exercising at home (which I was told not to do) the muscles are dieing and some are dead already, but I am out of the brace and went back to work as a waitress. Even though the pain was so bad most of the time I wanted to rip my hair out and scream. Times its milder than others and times that there is nothing that touches the pain.
I have spent years with Dr's over all of this.
And then in 2007 things went haywire in my body. My family Dr ordered some blood work and I got a call ASAP that I needed to see a lot of different Dr's and fast. Plus the place on my back needed to come out immediately. It was feeding on my body. They thought.
Then they sent me to a endocrinologist who spent 2 months running test after test on me. And they found that my Pituitary gland was not working, more than likely damaged from the gun shot to the back of the head and when that shut down, my Adrenal glands shut down, and the Thyroid gland is under active (didn't want me on the meds for that due to already having such a huge weight loss). But it is shutting down now also. There is nothing that replaces all that the the glands produce, except a steroid, which will cause my bones to be even more brittle. **sigh** But will help with the fatigue (but not much). then to the lung Dr who told me I had hypertension of the lungs and wants me on oxygen 24/7 (cant do that at work) and then he looked me in the eyes and said Deborah you poor thing after all you have been through I have to tell you that you are literally starving to death. And there is nothing I can do but add oxygen and it will help your body feel a little better. I walked out of that office stunned.
Then to the Dr for the pancreas and stomach that had lit up on 3 on the many nuclear test they had done. Both are extremely inflamed and the biopsy's came back with strange readings and they don't know why. Not cancer, but my stomach is not working and will not allow my body to absorb any nutrition, which once again I am starving to death and I have two more things shutting down in my body. Two more meds added, to help break down my food, and try to ease the irritation in the tummy. NOT working.
Also all of this has put me in a critical stage of anemia.
Needless to say its all fatal, and yet no one can say why this is happening or even try to stop it. There are NO meds.
The pain from the RSD and everything else is unbelievable and also they think I have Fibro. along with everything else. I cant eat most of the time due to the pain, but then what good does it do to eat if you cant absorb it? I try and try though.
No I haven't given up, not at all. I still work a full time job, on my feet 8 hours a day and usually overtime on top of it. Now, 3 of the Dr's have told me to quit work immediately and go on disability, just how can I do that? I need my insurance, and disability is not something that goes through over night, That could be a 2 or 3 yr wait.
My Dr for my stomach has told me not to change my gland Dr that what she found is very rare and most Dr's would of never found it. So at least I know I have great Dr's. But I have no one to talk to about all of this and no one that has had anything like it.
Can anyone help me. Anyone have anything like this? And ideas on a way to get some nutrition? I am so tired all the time and the steroids have to go, and thats all I have that they can give me for the fatigue. I really feel lost in a sea of Dr's and words that seem to just bury me in things I dint understand. They say take vitamin supplements, but I can not absorb them, so do I take them and waste what money is left after all the test and visits and meds?
I know they have handed me a death sentence, but no time limit and what will shut down next. They are watching my kidneys, guess that may be the next problem.
I guess I need people to talk to and hear what others are going through, I know there are others out there worse off than me, I am just so lost. And there is no money left for going out to dinner or movies etc. This has drained us completely and left us kind of wondering what next. What to expect. I hope I have found a nice place. I'm not a one to whine, just looking for answers.
Are there places out there some where that will help with pharmacy bills? Mine are staggering, and its getting to the point of which meds do I need more, what is more important.
Thanks for reading and listening to me.
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