Back again.

[Guest guest]

I am going back to IU MED on Monday. I have had the worst summer

since having the intrathecal pump placed. I started noticing I was

avoiding food again this spring, because it was causing increased

pain. I also started having low grade temps for which no reason

could be found. I also started having episodes of chills requiring

me to wear my winter robe to bed at night in the summer with the air

conditioner on. I had spoke with my pain management Dr. about all of

this and my primary care Dr. was attempting for find the reason for

the low grade temp. I had multiple different tests done, west nile,

and others to no avail. The primary care Dr. said " it is your

pancreas " I had spoken to the pain Dr. about how much pain I was

having. After a few months and seeing another G.I. in Indianapolis

thru Methodist hospital, my pain Dr. said " that he never believed

there were pancreas problems and that he had checked with " all " of

his Dr. friends and that they say that pancreas divisum and an

annular pancreas don't hurt this bad, and don't hurt at all. I could

see where this was going, and said " alright " I won't argue with you.

The MRCP I had this summer ordered by the Dr. from Methodist showed

the divisum again. How can I make up such a disease process, prior

to this I had never even heard of such a monster. I was basically

dumped by the pain management Dr. to another pain Dr. in Muncie who

can at least fill my pump. I had along converstation with my primary

care Dr. and he told me that this specific pain Dr. when he can't do

alot of high ticket proceedures on you he doesn't want you as a

patient anymore. So basically he did surgery on me to place the pump

which cost in the neighborhood of $90,000 and two years later dumped

me. I found out this summer through a simple x-ray that I have

profound degerative disc disease in my back. I had always wondered

if all of the back pain I had was pancreatic or something eles.

My husband tried to pick up an Actiq RX for me at the hospital where

he works and the pharmacists accused him of us selling them. Said "

he was going to call the police " then the problems with the pain Dr.

started. I wondered if it wasn't the price that they were having to

pay for the Actiq and he wanted to switch me to liquid morphine when

I got the RX and saw that it was only $8.00 I knew this was the

reason. I did try the liquid morphine and it made it worse, I was

unable to think, lost in a fog and painful to the point of being

walker bound again. After a few days of withdrawl my family Dr. did

give me back the Actiq, he saw no reason to take it away I have used

this since 2000 it works for me, and why change it. This past summer

has been a nightmare I don't want to go through again. I am only

able to eat cereal and fig newtons at this point, although

occasionally I get so hungry I eat something I shouldn't and have to

deal with crying pain. This disease process stinks and unfortunately

for us most of the Drs. don't understand it either, and don't want

too. I am tired of being treated like criminal for wanting to live a

somewhat reasonable life. What drug addict is worried about a clean

house, clean laundry and taking a bath? What drug addict is worried

about caring for their family, or actually being a participating

member of their family? Most of the things I have seen and read

about addiction show social isolation and people who get so involved

they care about nothing eles. That is the farthest thing I have seen

from any of us with this disease, all we want is for life to be what

it was prior to our symptoms of this process, for which I have come

to the conclusion is just too much to ask from the medical community.

I will post after my visit at IU.

Atwell LPN