Where do I begin? I have found myself overwhelmed with all we have to deal with on a day to day basis but we both have to keep trying to move forward. Let me start by telling you a little bit about us.
Dennis is 41 years old. He was born and raised in Mid Michigan with his older sister and his younger brother. He has 2 wonderful children, both grown and starting families of their own. He is a grandfather. He drove a truck for many years. He met me, his wife, in a small truck stop in La Grange, Ga. Love from the beginning we were inseparable and have now been together for nearly 14 years and married for almost 10. He enjoys model railroading, collecting coins, playing games and spending time talking with family and friends. Hes pretty much your average guy but in an extraordinary way.
I'm your average housewife I suppose. I am 40 years old, no children of my own but I certainly claim his children as mine. I enjoy cooking, quilting and crafty things. I like doing things on the computer and have recently been thinking of going back to college for some type of degree in them. When I met Dennis for me it was love at first sight. I was also a truck driver and when I saw him my jaw dropped open. Oh my goodness who is this man gracing my presence! I was new to driving a truck and he enjoyed spending most of the night picking on me for being a rookie. I guess I liked the verbal abuse because I stuck to him like white on rice.
Our story...
On August 22nd 2007 Dennis had a fall and folded his foot under itself, tearing the lateral ligament. In a nutshell, it was a bad sprain. We thought he would be on crutches for a couple of weeks and then he would be fine. We joked about him finally getting to relax on a vacation. How naive of us. We had no idea that our lives had already changed in unimaginable ways.
I went on the road and left him at home. Over the next couple of weeks we spend 99% of our time talking on the phone. My parents go over and check on him every couple of days. Dennis is telling me that he is okay but I get a phone call from my mother saying that he really needed to go back to the doctor. That his ankle was very swollen and his entire foot was discolored and he wouldn't allow them to take him. So I got a load home to check things out.
When I saw his foot my mouth dropped open and I was in horror. His foot was so swollen, so purple, black and blue. I could not believe it looked this way. He said he hadn't wanted to worry me while I was gone so he didn't tell me. He was in extreme pain. I took him to the ER Room because it was so bad looking I was just terrified. I thought he could possibly loose his foot. The ER Doctor took one look at it and said something wasn't right with it and had an ultra sound done on his leg looking for blood clots. The temperature in his foot was much lower than in his other foot and you could barely touch him without squinting in pain. These are also symptoms of a blood clot but there were no blood clots. The ER Doctor recommended that he see a specialist.
So we see a specialist. This doctor... I don't even know how to describe him without becoming upset. He treated my husband like crap. He came in, was very rough with his foot, hurt him terribly and was really rude to him. Told him that a month of physical therapy would fix it his foot and ankle, that there were no fractures and the x-rays looked fine. So we leave thinking okay this will get better. He goes to physical therapy for a month, 3 times a week. His range of motion improves ever so slightly but he never gets any better. The swelling never goes away. The color never changed to anything normal.
The last time he goes to physical therapy he has a different therapist. This woman determined that Dennis was just being a baby and was exaggerating even though she never even had him take his sock off. The first thing she did was make him go to the parallel bars to walk. Walk?! I told her, he hasn't used his foot in almost 2 months. Hadn't walked without crutches in that time. She lowered the bars so he could only use his fingertips and demanded him to walk. That man held himself up with his fingertips. He tried to walk as well as he could. With tears streaming down his face, his body shaking, he made it to the other end. She told him to turn around and when she saw his face, she turned around and looking to another therapist she rolled her eyes. I was furious. I told her that was more than enough. She let him lay down and put ice on his ankle as he laid there and cried. Now anyone who has ever met my husband knows he doesn't cry without reason, especially in front of others. I have seen him cry 4 times since we have been together. Once when his mentor, good friend and father figure past away, when his brother, niece and nephew past away, when his grandmother past away and on this occasion. He had to be in massive severe pain for him to be crying. We left and I told him I would never make him go back to that place.
Upon seeing the doctor again he came in and almost immediately told him to stand on that foot. Dennis told the doctor if he tried that he would fall because he couldn't put any weight on it at all, it hurt too much. He said he wanted him to stand on it anyway. When he refused to try that the doctor said he would have him do therapy for another month and he left the room. Looking at my watch he was in the room with us for only 4 minutes total. We decided this just wasn't a good doctor and we needed to find out what in the world was going on with his foot.
We found another orthopedic specialist about 2 hours away from our home. He was a wonderful doctor. He ran some tests including a bone scan, MRI and x-rays. He could see that it had now been about 3 months since he injured his ankle and was surprised by how discolored and swollen it still was. This doctor really listened to what was going on and showed that he cared and was interested in finding a solution to this. He put him in a walking boot to help protect his foot and ankle. This was a huge help as he didn't get it bumped anymore and felt more secure in moving around. He had him go to a pain management doctor for testing. Also a wonderful man who was experienced, kind and wanted to do everything he could to help.
Dennis ended up having a Sympathetic Block. This is an injection of anesthesia into the nerves along the spinal column. Of course there is more to the procedure but if you click the link it will give you a better description than I can. Well the block worked. The only problem was it only worked for a couple of days and then wore off. But! This was an extremely helpful procedure because they used it to diagnose him.
At his next doctor appointment we were told that Dennis has RSD (Regional Sympathetic Dystrophy) more commonly known as CRPS (Chronic Regional Pain Syndrome). He was refered to the pain management doctor who did the injection for treatment.
So finally we had an answer. Now we just had to figure out what RSD was. I have to tell you from a wife's standpoint and someone who doesn't have this medical condition, it was devastating to hear that there is no cure for RSD. I couldn't even fathom what thoughts were racing through my husbands head when he heard the words "no cure". I was heartbroken for him. Through all the years we have been together he has been so energetic. So full of life. Extremely active. Then this hits him like a piano falling on his head. He had more blocks done and each time it lasted for only a couple of days then wears off. I ended up having to quit my job to take care of him. This has also impacted us in ways we never could have imagined.
We decide that we are not going to let this beat him. It's not easy. Living with pain day after day with no relief. Starting with mild pain killers, going to darvocet, methadone, morphine, Oxycontin... and still, no real relief. I felt so helpless. I feel helpless. I cant fix this. I cant make it better. All I can do is watch the one person in this world I love the most, suffer. I take showers to cry for him. I try not to do everything for him because I don't want him to give up. I try to keep him active by making him go shopping with me, making him go for drives or to visit family. We moved to be closer to his family so we would have a little extra help.
After we moved I became sick. I have been diagnosed with Palmoplantar Pustular Psoriasis. Its a genetic skin disease that is brought on by stress. My dermatologist believes that it was most likely brought on by the stress of what my husband has to deal with, the RSD.
Let me bring us up to date. After the move we had to find a new pain management doctor. We were refered from a local one to one in Saginaw, Mi. His last doctor had planned on doing a SCS (Spinal Cord Stimulator) Implant in hopes of giving him some relief. But we were at the point we just had to move. The new doctor also feels that this is the only option he has now at finding any type of relief. So he has done all the pretesting, phychological testing, physical therapy testing and class about the surgical procedure. We are waiting on them to schedule the partial implant which is like a pretest, to see if a full implant will work. The surgery is very expensive so they want to make sure it will work before they put the full implant in. They expect somewhere around 50% of the pain to be relieved. They have never seen anyone get 100% relief.
The full SCS Implant costs approximately $45,000.00 which we are fully relying on donations, family and friends. We have sold everything we could to go towards this. We will accept donations if you choose to help out, but we are not asking for handouts, begging or anything. Just any help we do get really helps with getting the bills paid.
So here we are. Playing the waiting game. Dennis is so nervous. Will it work? We dont know. We pray that it will. He is such a strong man but I have seen him become fragile and even weak in some ways. All we can do is wait now, hope, pray and try to live day by day. I will be posting his progress and pictures on this blog. My hopes is to bring awareness of this to other people in hopes of finding a cure.
My name is Kel and my husband Dennis has RSD. This is our journey of hope...
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