RSD Interview #28 - With Heidi Marie Sheets

HOW AND WHEN DID YOU GET RSD?
I underwent oscillatory shrinkage surgery of my right shoulder on September 15, 2005. I was to be out of work for 6 weeks. Since the surgery, I have had intense, burning, stabbing pain which has not only worsened but has spread. Initially, all the doctors thought I was just wanting medication. Then, after requesting three "second opinions" and going to a large reputable hospital in the city of Detroit (close to my home), I first heard the term RSDS from an Orthopedic Surgeon, who referred me to a pain specialist at the hospital. They did many tests and confirmed the diagnosis. It is in my right shoulder, face, skull, neck, scapula, breast and down the right side of my back. Lately, I can feel stabs in certain areas of my right thigh and it, too, is beginning to burn.

IN WHAT WAYS HAS IT AFFECTED YOUR LIFE?
My husband of 11 years could not tolerate all the doctors’ appointments, my depression and mood swings. And, eventually, he left me. I cannot care for my children the way I would like to. I have five children, whose ages are 23, 19, 17 and 11-yr-old twins. Since the divorce, my ex-husband and I  share custody. I used to be very active and worked at a good job, but  I am no longer able to work outside the home. I cannot keep up the house the way I would like, and I forget things easily. Due to my condition and how I am feeling, I miss many important events (including family gatherings). I miss certain activities with the children. I used to love to play tennis and golf, but both are simply out of the question now.

DO YOU HAVE A GOOD SUPPORT SYSTEM?
No. I had a wonderful Palliative Care Physician, who recently relocated his practice and went back to oncology. So I have a new physician who has changed the regiment I was on and was doing well with, because he was not comfortable prescribing the dosage of medication it required to keep me comfortable. So, for the past six months, I have been in great pain (almost as bad as when I was first diagnosed). My family is not real close and I don't get a lot of help from them. My older children are teenagers and do their own thing, and my oldest lives out of state. So I feel pretty alone most of the time. I don't always get the dishes done, and we eat out more than we used to...depending upon how I am feeling. Sharing custody of the children helps because I get a full week to catch up, but it's like a whirlwind at times. I wish I had more help. Most of my friends don't come around much anymore because they don't know what to do or say. I was a very strong-willed, independent woman, and I certainly am no longer that person.

DOES FAITH PLAY A PART IN YOUR STRUGGLE OR YOUR STAMINA?
I sent all of my children to parochial school and, throughout my marriage, I attended church regularly. But, for some reason, I have lost faith. I read at home, go online and find strength in things I believe or read; things I have been taught. But I do not utilize the power of prayer as much as many.

HOW HAVE YOU RE-INVENTED YOURSELF?
I have become a much more understanding, caring and compassionate person. I went through a very dark depression I never thought I would come out of, but it has made me stronger (even with all of the struggles I am currently facing; not only from the illness, but also from financial problems, divorce, and losing faith in the person you thought loved you the most).

HAS ANYTHING GOOD COME FROM THIS TRIAL?
I've learned to depend on myself, and am starting to take steps to trust others again.

WHAT THINGS DO YOU MISS THE MOST?
*I miss not worrying whether my disease will hinder me from attending appointments or kids’ events.
*And I miss being able to be active in my younger childrens’ schooling, like I was with the older girls.
*I miss having a day without a worry in my head and feeling as though people see me for me, not for what I am going through.

WHAT DO YOU WANT THE GENERAL PUBLIC TO KNOW ABOUT YOU AND/OR YOUR DISEASE?
This illness knows no boundaries. It can strike anyone, at anytime. If I happen to put make-up on one day and fix my hair, it does not mean I am not in any pain...it just means I felt like trying to feel better about myself that day. You cannot see this illness. It is hard for me even to describe what I deal with on a daily basis to people closest to me, who see me struggle and argue with physicians. I want people to know that doctors do not know everything about everything, and you MUST know and trust your body and what it is telling you. You are your best advocate. You need to fight for what you know you are going through, regardless of how many times you must repeat yourself.

*THESE ARE GENERAL QUESTIONS. IF YOU HAVE MORE TO SHARE, PLEASE DO SO HERE.
I live in southeastern Michigan and I would very much like to be part of any trials that may be going on in the Midwest.  I would love to try a Ketamine infusion, as it is basically the only procedure I HAVE NOT had. I had a spinal stimulator implantation, had it re-aligned and laminectomies done as part of that, and ultimately removal (which has caused other pain), musculoskeletal, in addition to the initial injury and surgery to my shoulder. What has worked best for people who have tried everything that pain clinics and neurologists have to offer? Is opiate dependence an issue, if it allows quality of life?
Thank you for allowing me to participate in your blog/book. I have thought of doing something similar to raise awareness. Not that Fibromyalgia is anything to snicker at, but I am tired of people referring to RSD as a type of this, as I feel the neuralgia and burning, the effects from the brain waves, make it much more complicated.