**You may
want to pack a lunch, this may take a minute or two**
Over the
past 2 years I have to come to realize that my disease is very enigmatic in its
genesis, cause and treatment. There is no set medication or therapy or
restriction or procedure that can, completely, cure it. If you look up any
number of sources online or talk to any doctor who knows their stuff (as my
previous doctors did) you will see this. Basically there are two things that
are consistent across the board.
1) Alcohol will make it worse even if it isn’t
the cause (which it is in my case) and
2) the recognized treatments are no
alcohol, modified diet and dietary restrictions and pain management. That’s it,
cut and dry.
I have
many new friends on here who are also sufferers of this and who feel my pain
figuratively and literally and some of them have taken steps to alleviate it by
having a procedure called a Total Pancreatectomy with Auto Islet Cell
Transplant (or TP/AIT) which basically removes the pancreas and hence the source
of the pain. It requires a lot of maintenance, so I understand and I just don’t
think I am ready to take that step yet.These same
friends and others on the numerous message boards and groups that I am in, have
told horror stories about doctors not believing them or ordering unnecessary
tests or accusing them of just wanting pain meds or it was all their head; I
couldn’t fathom that because mine were so awesome.
My main
doctor, Dr. Molly Imber, believed me from the beginning that something was
wrong and, according to my gastroenterologist Dr. Teresa King, was very
stubborn and determined to figure out what was wrong. Once diagnosed she did whatever
she could such as finding what meds and such worked. If something went wrong,
I’d go in, she would listen to me and answer my questions and concerns and then
give me options on what to do. It was a rhythm we got into; a general health
check and how the pain levels are. If stable, forge ahead, if not consider
options including increase or change in pain medications.
But since
January I have been forced, thanks to health insurance premiums being beyond
ridiculous, to use the VA for my treatment and meds basically since I can. So I
figure that I go in, they look at my previous records, do whatever
verifications that they need to do and continue treatment because for the most
part it was working. Sadly, that was not to be the case.
The first
thing they did was to change one of the meds, the Oxycontin that had just began
to work because they, in their words, use another med (Morphine) for pain
management and do not believe in the other. Okay, fine. I am open minded to
this so if it works, fantastic. But deeper analysis and probing showed me that
they actually may be concerned with the addiction factor of the Oxy so they try
to get people off of that and on to other stuff. Fine, I’m flexible. Whatever
works. Then I go to their “specialist” who proceeds to ask me questions like
this is my first rodeo. So I patiently, gritting my teeth, answer his
questions. I show him my massive folder of medical documentation and he
proceeds to look at one test and one set of notes and then orders a, seemingly,
unnecessary test and then says he wants to prescribe an “alternative” pain
medication to try and get me off the other long-term one mentioned above. I am all for trying new things in addition but
I see no need to mess with a working formula if the parameters are comparative.
Now today,
when I call in because I am having further issues with the pain and want an
appt as I did in the past, the nurse proceeds to lecture me about “masking the
pain with pills” and that there are other things that can be done like diet. I
stated that I understood that but I wanted to talk to him about it. She says I
need to talk to above mentioned clueless specialist as well as talk this
alternative medication (which was actually never dispensed). I would’ve sat and
debated more but I was tired, frustrated and of course, flaring in pain by that
point. Needless to say I now understand, in a small way, where my new friends were coming from.
Now don’t get me wrong, I am thankful that I had the VA to fall back on. Its is coverage, treatment and medications at a relatively low cost. I know that there are those out there who would like/need any kind of coverage. So I am completely and totally appreciative of that. I guess I was spoiled and the salad days are over, so to speak (no mom, I’m not eating salad yet even though I should)
Just another
day in the life..
Thank you
for indulging me in this rant.
