HOW AND WHEN DID YOU GET RSD?
Just like any other morning, I got up to my 5am alarm clock to get ready for work, as I worked 6am-2pm as a Certified Nursing Assistant in a nursing facility. I have done this type of occupation since the age of 18. So, as I was doing my everyday duties at my job, it was time to do my repositioning on a resident. So I asked my mother (who is also my co-worker) for assistance. As we were repositioning our resident, I felt this terrible pain rip through my right hand. I immediately reported this to my supervisor. So the next morning, when I returned to work, I reported to my supervisor that my hand was still hurting me very badly. She sent me to the emergency room. They did an x-ray and it showed no break but, since I had such swelling in my knuckles, I was referred to an Orthopedic Surgeon in another town about an hour away. So I came home and scheduled that visit. Then I went and had the MRI and it showed I had tendon tears; confirming that I, indeed, had to have surgery. So the day of my surgery was in late September of 2011. As I came home in a plaster type splint and an Ace bandage for the first 3 days, I just knew something wasn’t right, as the burning in my hand was awful. So, after the 3rd day, I reported back to the surgeon and he then placed my whole right hand in a cast for six weeks. I explained to him, at that time, about the feelings I was having and I was told to take Tylenol. So I did what the doctor said but I still felt this burning sensation, and I told him about this feeling at every weekly visit. Finally, the day came for the cast to be cut off. YAY! So the surgeon came in and said “Here you go. These are your instructions to start therapy and you start today.” I said “Today? Really? OK.” So off to therapy I went, and I tried to do this therapy as much as I could. And I kept telling the therapist the same thing about this feeling and, about the 4th week in, she said to me…“Lori, I think you have RSD. So, to confirm this, we have to send you to our Pain Management doctor who deals with RSD/CRPS.” So I scheduled my appointment and went to see this doctor and he confirmed that I, indeed, had RSD. So he started me on medication and, after about 2 months of medication, and the pain still there and the burning still just blazing through me, he said that he was sending me to a larger clinic that does more invasive procedures for RSD. So I called the doctor he referred me to, went to my consultation with him and he, also, confirmed I had RSD/CRPS. So he got out this little machine and took a temperature reading of my hands and my RSD hand was 3 degrees colder than what I call my "good hand". So the first Ganglion Satellite Block was scheduled. With very little relief from that, he then scheduled me for a second Ganglion Satellite Block and, with little relief from that, our next procedure was the I-Flow Catheter. This is a catheter that is inserted in my back that connects to a medicine ball that I hold in a fanny pack around my waist 24/7. I could turn the medicine off and on, as needed. So, 5 weeks before my wedding, I scheduled this procedure to be done .CRAZY, RIGHT? My husband wanted me to wait until after our wedding but I told him if there was any chance I could be pain free, by God, I’m taking the chance...and I took it!! Well, three weeks into having the catheter in my back, I woke up one morning, not feeling quite right in my face. When I looked in the mirror and saw that the whole right side of my face was drooped, I went straight into panic mode. I called my husband at work, just crying, not knowing what was wrong. He said to calm down and call the doctor; that he, himself, was on his way home. When I called my Pain Management doctor who performed the I-Flow procedure and explained to him what was going on, he said that I need to come to the office as soon as I could, that the catheter shifted in my back. He called the symptoms I was experiencing Horner’s Syndrome. When we arrived at his office, which is three hours from our home, he said that, yes, it had shifted and needed to be removed. He then said that my next option for pain relief would be the Spinal Cord Stimulator, which I refused (as I had heard way too many horror stories on it). So he referred me back to my family physician and for more physical therapy. I tried to do the therapy but, a few weeks in, the therapist said he felt the therapy was just doing more damage than good. I would walk out of their office sobbing. So, to this day, I still see my family doctor every month for RSD and I take several different medications everyday..sometimes the same medication several times a day. BUT, on a good note, I feel blessed to have such a great doctor who is very understanding and caring.
IN WHAT WAYS HAS IT AFFECTED YOUR LIFE?
RSD/CRPS has affected my life in so many different ways. I can no longer do a lot of things with my children, as I have RSD in my right hand, arm, shoulder (and, within this past week, it went to my lower jaw). I used to work out regularly, with my husband, at the gym and I no longer can do that. House chores are now BIG chores for me to accomplish.
DO YOU HAVE A GOOD SUPPORT SYSTEM?
I have an awesome family!! I thank God everyday for them. My husband and our four kids are so great to me. They all understand exactly about RSD. My mom and dad are, also, very supportive. My husband just recently got a tattoo, in support of my RSD, and it says "With Pain Comes Strength".
DOES FAITH PLAY A PART IN YOUR STRUGGLE OR YOUR STAMINA?
Without faith, I wouldn’t have any hope. I have to have faith that someday there will be a cure and that, one day, I will wake up and I will be MYSELF again.
HOW HAVE YOU RE-INVENTED YOURSELF?
I’m a lot stronger than I thought I was. I take one day at a time. I only do as my body lets me, and I know what my limits are.
HAS ANYTHING GOOD COME FROM THIS TRIAL?
Honestly, I hate everything about RSD! The only good thing that came out of all this is the amazing, supportive people I have met through all the support groups. I know I’m not alone and, when I’m having a bad day, I know I can always count on my RSD family to pull me through.
WHAT THINGS DO YOU MISS THE MOST?
I miss just carrying on with my children. I miss hugs from my husband without him having to tell me first so I can brace myself. In all honesty, I miss my life before RSD became a part of it.
WHAT DO YOU WANT THE GENERAL PUBLIC TO
KNOW ABOUT YOU AND/OR YOUR DISEASE?
THAT IT IS REAL! We are not crazy people looking for attention. We are not drug seekers. We feel something inside us that is unbearable. Just because we look ok on the outside doesn’t mean that’s how we feel on the inside. I have tried so many times to try and raise awareness in my small town but, since no one knows about it, I stand alone. My children hold me when I cry, My husband picks me off the floor when I’m in pain. People don’t see what the family of an RSD sufferer goes through with this horrible disease. RSD/CRPS is a very painful disease that can tear a person down. A great support group is so important.
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