Monday, October 20, 2008

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.


Anonymous said...

Wow, you have a lot going on right now. I'm cheering you on as you take it one day, or one hour, or even one minute at a time. It's good that you have a doctor who understands and is willing to work with you (the pain doctor). You also have the infectious disease doctor who is looking at all angles of what is wrong. And you have family and friends (online ones too!) who care. Keep us posted as to what is going on. Keep the faith hun. (((HUGS))) and prayers.

Anonymous said...

Remember I'll be there for you.We'll make it through with God to guide us.


Maureen Hayes said...

Thanks for the support guys, it means a lot to me. It isn't easy to write the truth when it is so painful, it meant more than you know that you both responded so warmly.

Thank God for good friends and good family!


Anonymous said...

Maureen, Pain and managing it are one of the greatest challenges of living with chronic illness arn't they? We don't want to have to take meds, but we can't function with unbearable pain. Finding a doctor who will help us manage the pain and medication, it can all be absolutely overwhelming.

I so understand the anxiety of changes to a pain regime that's working. If someone were to change mine right now, it would be pretty darn scarey to think of the pain I'd be in.

I'm glad your doc. is a good one with your best interest. I am thinking of you and yes "cheering" for you through this time of Pain and pain management transition. Cyber hug-- Kerry

Anonymous said...

If the pain management is working, why do you have taper the pain medication? I hope your doctor gave you a very good reason.
I also went through many years of untreated or under-treated pain. Currently I have good pain management, but I live in fear of going back to the old days. Pain medication has allowed me to resume a good and productive life. Sometimes tapering meds is not the answer.

Maureen Hayes said...

Just as an update--I am back now on my original dose. I did a full week of a slow taper and had pain, so the doctor bumped me back up. Perhaps I can try at another time to see if I am able to function on less medication, but for now I needed to be where I am.

I appreciate the support and the understanding. So many people who don't deal with pain don't understand that when it isn't treated properly, you can't live. A diabetic wouldn't be denied insulin, but when it comes to pain management so many people seem to automatically assume addiction will be an issue that they allow people to suffer. I am lucky to have finally found a good pain management doctor, but I still remember the terrible suffering I went through before I found him.

Thanks for your thoughtful comments.

Love and gentle hugs,

jeisea said...

Hi Maureen
I remember how abandoned I felf when told medication was no longer an option for me. I searched for a long time before I found some non med things that help. What I did discover is that the body is resilient. You adjust to the greater level of pain and find that you cope as you were before. The benefit you will get is a greater ability to think without side effects of meds. Living with chronic pain/illness is a swings and round abouts experience. I feel for you now but sense you are a strong woman. Take care of you.

Kara S. said...

Thanks for stopping by today, Maureen. {{{Hugs}}} to you as you deal with your pain. My hubby suffers from RSD and RA so we've been down the road of a pain management clinic - it wasn't a good experience for us. After the first 3 months, we never saw the doc again, only nurse practioners who were totally clueless. Thankfully, our general practitioner saw the problem and took over the pain mgmt.

When you have some time, send me an email so we can chat about writing and publishing. E-mail addy should be in profile.

Anonymous said...

You are in my prayers.