Rough Times Ahead

For many of us with chronic illness, chronic pain goes hand in hand. I, unfortunately, fall into this category myself. For many years I resisted the idea of pain medication and was able to function without needing it. During the last four years, as I became increasingly ill with more things, especially chronic pancreatitis, it became clear that I had to change my way of thinking on the matter of pain medication. I went through 2005 with more time spent in the hospital that year than home, mostly because I wasn't on pain management. Finally during a six week hospitalization around this time last year, I was sent home with medication. The experience was so bad I don't even want to recount it here. I wasn't given the appropriate medication, the correct dosages or any sort of support from a physician to monitor me. This all necessitated a move out of state to find competent medical care.

Beginning in January of this year I started seeing a good doctor where I moved, who not only finally got the pain under control, but carefully monitored me and helped me to finally get control of my life back. The approach in his office is multidisciplinary, meaning I am also seeing someone who works with me on stress reduction and alternative ways to manage pain, such as relaxation techniques, guided imagery and biofeedback. To say it has been a long, scary and painful road back to myself would be the understatement of my life.

Today my doctor and I met for our regularly scheduled appointment and he said the thing I had been fearing most, "we need to start trying to cut back on some of medications". I know he knows what he is doing, that he has my best interests at heart and that he will be there to support me. I know all these things logically, but emotionally is another thing entirely. Emotionally I am frightened of going through pain, withdrawal and the whole terrible upheaval that had been my life prior to this hiatus. I know that thinking positively is the best cure for the fear, but the pain and the fear are so fresh in my memory that at moments they overwhelm my logical side. I fought so hard to get back to where I am now, which isn't anywhere near where I wish I was, but still compared to where I was a year ago, it is miraculous. I don't EVER want to go back to the pain, the withdrawal symptoms, the lack of concerned medical care. I didn't uproot my whole life, and that of my mother with me, to go backwards.

I know logically that this doctor isn't like the other ones. He does listen. He is actually available when you call, and if for any reason he isn't, there are other doctors available through the practice 24/7. The first "pain management" specialist I saw was in two days a week and not available at all in between, so if you had a problem, you suffered until you could reach him. This doctor isn't him, and I know that. But I still have fear.

I write this not to scare anyone else who may be needing pain management, without a doubt getting the help I needed was the best thing I ever did. I wish the process had been simpler, so the fear wouldn't be so great. I write because I know that many of you out there understand. If you haven't experienced it personally, you have watched someone you love go through it. I write because giving a voice to my fear takes away some of its power. I write because I always want to be honest about where I am at and what living with chronic illness is like, even the parts that aren't pretty and upbeat. I want to be true to myself and to those who read this.

So, as I head into my scary time, I am using each one of you as my imaginary cheerleaders. I think of all we go through each day and all we accomplish despite the obstacles we face. I promise to use the techniques and self care I have espoused to you, taking care of myself as I head into this. I ask for your prayers, support and good wishes that things will much more smoothly than I am anticipating, and that this 'bogeyman of fear' will be banished quickly and permanently.

Tomorrow I head back to the infectious disease doctor for test results that will point either to a problem in that area or possibly back to the adrenal insufficiency to explain the fevers, fatigue, diarrhea, pain, etc. . . that I have been suffering from. Soon I will have the biopsy on my thyroid that will help determine what is up with the nodules. Each day will be a new worry, but hopefully also a new answer. During times like these, it is sometimes tough to remember that the bad times never last forever.