Long drawn sighs...

Well... what can I say? One major disappointment after another for him. It's heartbreaking. They postponed his trial yet again. I havent posted in so long because honestly, Ive been fighting my own depression now. Im trying very hard to pull myself out of it, I mean, if I get depressed, how can I possibly be of any help to my husband? So another let down by it being postponed. I get the phone call, I hang up, I tell him its cancelled, just 3 days before trial day. He cries, he gets angry, he cries some more, I cry with him.

How someone can go through day after day after day and they are in massive pain, then dealing with how their life has changed so drastically. I just have no idea how he or anyone else does this. My heart goes out to all of you. I cry for all of you, I hurt for all of you. So we have taken 2 steps back once again. We are fighting the doctor's decision and going to try to get this for him. Other than going to another country, spending thousands of dollars, putting him into a coma to try to see if it helps him, the implant is his last hope. So now we wait.

The medications he is taking he hates. Besides the Morphine and max dose of Oxy allowed per day he takes almost a dozen other medications also. He has side effects from one so he takes another, which gives him a different side effect so he takes something for that... its a vicious never ending cycle. We have to hold out hope that he will get the implant and that it will give him relief.

He tried getting in the pool but the motion of the water was too much for him to handle and he had to get out. Another disappointment for him, he always loved to swim and used to be an excellent diver. So no swimming to cool down, the heat makes his leg and foot swell really bad. Traveling to visit anyone is hard on hi, anything over 30 miles in the car takes an entire day to recover from. So its a very long slow boring summer.

We are trying to get the doctors to start treating him for his depression. He needs to be able to talk to someone about the pain he is in because I just dont have the knowledge to help him. Of course I listen to him and we talk about it all, I just dont know what I can say to really help and he needs to have better medication for depression and anxiety. His medications cost about $1,700.00 a month as it is but he needs a good anti depressant to help him get through this.

I worry so much about him. I think anyone who is a loved one of someone suffering from RSD knows what I mean when I say that there are some nights, I simply lay in bed watching him try to sleep. I lay there and I cry because its good just to see him when he does get to sleep because I think thats the only time when he isnt directly feeling the pain, when he is sleeping. Although I know hes still in pain because when he sleeps he cant keep still, he moves his foot and leg here and there trying to find a spot thats comfortable. He gets some sleep, but its not enough. He dozes in and out all day long. He has little quality of life and I dont know how he does it. Sometimes I think he doesnt say forget it and give up just because of me.

Anyway, Im thinking of starting an RSD support group in our area. Just to get some people together, who understand what each other is going through, maybe people can reach out to others for support and ideas or just someone that will listen. I think its a good idea. I just dont know where to start. Anyone have any ideas? Does anyone even read this? Well, Ill keep plugging away on this end...


We hope everyone has a pain free and happy day, take care of yourselves!

Sorry its been so long

I know it has been a while since the last post and I give my sincere apologies. So much has been going on lately, life has been crazy.

First off let me say that I am so glad I did not allow the er room doctor remove his toenail for that infected toe. The antibiotics have cleared it up totaly and he is able on hsi own to try to get the ingrown part out. His toe looks good again.

He has been having pain control issues. I think I mentioned before they took him off the one morphine to put him on oxycondin so now he takes morphine twice a day and oxycondin 4 times a day. He was having problems urinating and thats why the change came about. The change in medication has helped his urination problems but the oxycondin does not control the pain like the morphine did. So his doctor upped the dosage of the oxycondin to twice the amount he was taking. That has helped him some but he still isnt sleeping well, he's keeping me awake because he is in pain and on more than one occasion I have woke up in the middle of the night to hear him crying in his sleep or due to his tossing and turning because he just can't get comfortable. The days seem to keep getting longer and longer for him. I feel so useless because I can't help him...

He has been having problems with his memory. It started back when he injured himself with all the medications but it has been getting progressively worse in the last few weeks. He told me the other night that it scares him because some of the things he can't remember are things that he has known his whole life and shouldn't be a problem for him to remember. I have been looking for some memory exercises online to maybe help that aspect but I haven't found anything fitting. If anyone knows of a site that is good for memory building please let us know.

Alright, on to other things. We made it through Thanksgiving. I really outdid myself this year on dinner and I have to say I think it was the best dinner I have ever made hands down. Everything was just perfect. We did go to his families house for about an hour but had to leave because his cousin was on his way and had sick children. We all know, sickness and RSD don't mix. So we came on home and spent a very nice evening together. The RSD was nice enough to ease up for the evening. I had recorded Macy's parade earlier that morning and we watched it while we ate. It was a good day for him. For both of us.

So Thanksgiving came and went, the snow started rolling in and the pain started getting more severe. He spends a little more time resting, dozing in and out, which tells me he isnt sleeping again. He told me the other day how sorry he was he has RSD. I told him it wasn't his fault or under his control, I married him for better or for worse and I am just fine taking the worse times too. We will get through everything together, just like we have for the past 14 years. Still, he was upset he couldn't shovel the snow off the walkway to the garage for me.

We put up our Christmas tree! Well, I put it up. He did go to pick it out with me. I got it off the top of the van and dragged it onto the porch where he helped knock the snow off of it. Then he helped me get it into the stand. Normally he helps me decorate the tree. Its sort of like "our thing". He loves Christmas as much as I do. We are both Christmas fanatics. But this year is so different from ones of the past. I can tell he is somewhat depressed. He didn't help with the decorating of the tree. He did help me put up some lights on the archway in the living room by holding the ladder so I could put in some nails. But he didn't help go through the ornaments this year at all. Didn't seem interested in telling me if I had the lights evenly arranged on the tree. I didn't even get all the ornaments on it because I didn't have the help I normally do. After I got it decorated I went in the other room and I cried. It is like I am alone sometimes. He is in a different world these days trying to fight a battle that I am unable to help with.

So right now we are on the couch, I'm blogging and he is desperately trying to stay awake and failing miserably. I tried to get him to go lay down on the bed and take a nap, but he refused, telling me that he wasn't tired. Right now he is doing what I call "the duck". His head bobbing when he dozes out like a duck dipping under the water. He just had a really big tremor just now. It startled me even.

I hate RSD. I hate the way it is changing our lives. I hate the way it is taking over. I hate that anyone has to live with having RSD. I know he has it rough but I also can't help thinking of others who have this and what they have to deal with day to day.

I finally talked him into laying down on the bed so I'm going to help him get settled now. My heart goes out to everyone, here's to having a pain free day!

Infected toe...

Just updating on his toe. He was to soak it several times a day, yesterday was the first day and after the first time he soaked it it broke open and oozed some. It really hurt him but he said he feels some pressure release even though it throbbed the rest of the day. He is soaking it right now and is not complaining as much as he had yesterday. When I brought him the soak he said, "thank you for making my foot hurt" I said "I would have thought you would say something like, oh I dont know, thank you for loving me so much" to which he replied with "I thought that's what I said?" lol He has a sense of humor today and that's a good thing, it means he isn't in complete agony right now.

We have spent 24 hours a day, 7 days a week together for almost the last 14 yrs. Except for when he first injured his foot and I went on the road alone for 6 weeks, we have never been apart. We really are soul mates. I have no idea what I would do without him in my life. He tells me often he wouldn't be far behind if anything happened to me. We fit like perfectly made puzzle pieces :)

Anyhow I just wanted to update on his toe real fast before I start doing things around the house. Take care everyone!

Tremors and other lovely stuff...

Back when my husbands injury was still fairly new, maybe 6 months old, he began to have tremors in his leg. These tremors would last for several minutes and sometimes even hours off and on several minutes at a time. They tried him on Lyrica to stop them but that gave him such severe nightmares he had to stop. It's odd that they seem to have tapered down so much. I wonder if that's due to lack of muscle mass or if the brain is just coping with the situation.

I was thinking about the tremors because he had one this morning while sleeping. I woke up and the whole bed was shaking. Looked down and his leg was just going at it. I don't know if I have ever been aware of him having tremors in his sleep before. I always noticed them when he was awake because it would sometimes shake the floor and he would let it be known that he was upset over it. But they've tapered down tremendously although they still happen.

RSD has changed our lives in ways most people cant even imagine. I'm glad I seem to have found us a community of sorts here on blogspot to fit into, although it's bitter sweet because I wouldn't want anyone to have to go through any of this. But in a way it made me want to cry because here, there ARE people who understand. Even people in our family don't understand. They say things like, "just walk on it and you'll get used to it". They don't understand the true pain that he has when he just sets his foot on the floor.

This has changed our lives. He is on antidepressants, I'm on antidepressants too. People don't realize it effects everyone in the immediate family. Sleepless nights for me. Times I stand in the shower and cry. Everything has been affected by this. He cant do simple things he once did like take the trash out. He cant carry a load of laundry for me or bring the groceries in from the car. Even our sex life is affected because I always have to be conscious of where his foot is and not touching it, not bumping it. We don't go for the walks we once used to enjoy. He used to love to swim but any movement in the water causes him extreme pain.

Where does this end? It doesn't. There will always be something standing in line behind the last thing. Its a never ending cycle. The hair on his leg stopped growing and is almost non existent. His nails have only been clipped twice in 2 years on that foot. The skin is dry and flaky. Thick on the bottom like a callous but not calloused. He has lost 2 inches of muscle mass in the calf. It's red most of the time, sometimes a shade of purple or blue. Sometimes it almost looks black. At the last doctor appointment it was purple with a bright red spot the size of a dime in the middle. Most of the time its swollen. He has to have it propped up 99% of the time or it swells really bad. The 2 hour trip to the doctor is so hard on him. Hard enough on him we are looking to move again so we are closer to the doctors office.

He now has an infection in the big toe on that foot. He started antibiotics today. He also has to soak his foot several times a day right now to help clear the infection up. I'll try to get him to let me take some pictures of his foot to post.

Having Severe RSD has been such a rough hard road. Especially on him of course but also on both of us. I wouldn't wish this on anyone. I couldn't imagine someone having this full body that would have to be unbearable.

I apologize for the pictures. I know they are not pretty and that toe is gross. I wish I could wave a magic wand and make all of this go away. We have hope that the SCS implant will help him. He is unable to wear a shoe and it's our hope that it will enable him to wear one. We also have hope that maybe he can at least walk with a cane instead of crutches. Hope is about all we have to cling to now. The last 2 years of RSD have taken everything else away.

Well I could sit here and type all day but the dishes wont do themselves yet! I pray that all your pains will be taken away so you can enjoy some relief!

Our journey...

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...