Since May 27th, 2010 (or March 15th
2010 if you go back to when the symptoms started) I have had to deal and live
with a very enigmatic disease/condition/illness, however you choose to define
it. I choose disease because it reflects the seriousness of it. It is enigmatic
because they are not 100% sure..
1.
What causes it
2.
How to treat it
3.
What causes the pain
4.
Why it is incurable (re: why doesn’t the
pancreas regenerate like other organs)
You can research, Google, look up on the internet and it
will reflect as such. Here are some
links from, what I would consider, reputable sources:
Actually, there is one thing that is 100% (I believe,
medicos/sufferers correct me if I’m wrong) and it is that consumption of
alcohol, in my case even in the minutest amounts which involves cooking with it
(yes I’ve tried it and yes it had the same effect as consumption) What else has
it changed?
1.
The biggest change is the pain. I am in some
form of pain at all times. Sometimes burning, sometimes cramping, always
uncomfortable. Even medicated it is down to a discomfort
A bit of insight into this pain as some have asked what it
feels like. First and foremost it is located in my upper abdominal area,
starting near the middle just below the sternum (the head of the pancreas) and
then to the left (the body and the tail) below the ribs to my left side sometimes
radiating to the back (since the pancreas is in the middle of the body). In
comparative terms I’ve given this basic description. Most of the time it feels like you do when you
eat way too much and cramp up (say during your Thanksgiving indulgences). At
its worst, it is a burning pain akin to someone taking a poker, holding in some
coals and then shoving through my left upper abdomen. Make sense? Sound fun?
2.
As I said, no more alcohol in any form. No way,
no how
3. I have to take no less than 25 pills a day just to make it thru, including enough high powered pain killers to drop a small Indian elephant and they don't phase me in the least.
3. I have to take no less than 25 pills a day just to make it thru, including enough high powered pain killers to drop a small Indian elephant and they don't phase me in the least.
4.
I cannot sit or stand for long periods of time
nor walk for a long distances (say a block or two) without needing to rest,
recover or deal with pain and be out of commission to recover (I once spent 5
hours at the Columbus Zoo, sitting for breaks every few minutes and
subsequently being unable to function much for the next 2 days)
5. My weight dropped from 192 lbs to 154 lbs in 11 months. I have since gained about 23 lbs of that back but it still yo-yo's unpredictably
6. My appetite is basically gone, I cannot eat as much as I want, my diet is more low-fat than before and my taste buds are all out of whack
5. My weight dropped from 192 lbs to 154 lbs in 11 months. I have since gained about 23 lbs of that back but it still yo-yo's unpredictably
6. My appetite is basically gone, I cannot eat as much as I want, my diet is more low-fat than before and my taste buds are all out of whack
I have to wonder something though, based on recent history,
and that is that my friends on here may not understand the disease, its
effects, its disabling nature and the effect that its had on my life. So I’m
willing the have a little Q & A here. Ask me anything you want about it,
curiosities, things you may not understand, clarifications, anything and I will
answer it to the best of my ability. I want people to understand that this has
turned my life upside down. It has completely changed the way I live, the
things I can no longer do and the drastic changes that I have had to deal with.
I do not want there to be any confusion on the matter, namely why I feel like I
am worthy and in need of Social Security disability insurance. This is my
future, my life blood and something that I need for my future survival to try
and maintain the closest semblance of normal that I can with this. So, the
floor is open. Ask away
