The Chronicles of Biff - Chapter 6 - 06/14/12

**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.

I do not like having to be on all these pills, especially the pain ones and if there were another way to make my life more comfortable (and keep all my innards intact) then I would do it. But they work. They make my days tolerable and my life some semblance of livable. And when it comes right down to it, that is basically all the treatment that can be given. Manage pain, aid in digestion, modify and follow diet and most importantly do not drink.  I do all of this. I know all of this. This has become a major part of my life so I am familiar and aware, and lately it seems more so than my new medical “professionals”. 

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.

8.5.7