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!

Set Backs...

Well we have suffered a set back. We now have to raise about $1000.00 for his trial implant. Which also has me wondering about the permanent one. I guess we will get it figured out. He has applied for Social Security Disability. We expect him to be approved with no issues and no delay, but you know how the government is so we are also expecting them to put up some hurdles to jump.

Now its just a red tape game we are playing here. Try to get them to help, try to get those ones to help, these over here to help, pray, wait, pray some more, jump through this hoop here, over that wall there... ugh. Im so stressed now I have to take an anti anxiety medication.

Anyway, he has an appointment tomorrow and Ill try to port then. Hope everyone has a pain free day!

Finally!

Finally after 3 days of sleepless nights, he is sleeping! Yes! I am NOT waking him up either. Not unless it looks like he will sleep too late to go to sleep again tonight. He did toss and turn a bit, had a couple of tremors, did the twitching, but then, he finally drifted off to deep sleep. Still, silent, wonderful, blissful sleep for me too! I actually slept! YAY! lol you don't realize how much sleep you miss sometimes until you get it. RSD is horrible for him to deal with but also for me.

So lets do a little update. His toes. Previously he has been fighting infection off and on the last few weeks with his big toe and the toe next to it. The podiatrist, who just happened to have experience with RSD (thank god) does not believe that he can handle injections to take care of the toenails that are ingrown due to the cam boot he has to wear to protect his foot. He feels the only way to deal with them is to do an epidural. Well he talked to the anesthesiologist and found out that he doesnt do epidurals so he now thinks it would be best to just put him under general anesthesia and take care of the nails. Its his thought that by putting him under, he will has less pain in general from it and hopefully keep him from having a flare up of the RSD.

Now, that's sort of a secondary thing because his pain management doctors are gearing up for his implant. We don't have a date for it yet but we are hoping that we will get one at his next doctor appointment.... that lil bugger set the alarm clock and just got out of bed lol So anyway, I will post when he is going to have the trial implant done and then will be updating daily so you can see what progress he is making.

I'm going to make a list of things that RSD has changed in our lives. I know that RSD and CRPS patients and families know, but I'm curious as to just how many things it has changed for us. Well, since he is awake Im going to jump off of here.

We hope you all have a pain free day!

Long time since posting!

Well so much has gone on. My mother had a stroke in mid January and I ended up having to leave him at home alone so I could go take care of my mother. That was scary. Luckily we had a lot of family who filled in for me while I was away.

Lets see, since I posted last he has added 5 new medications to the list, 2 of them antidepressants. He has been getting more and more frustrated and depressed and he has been saying things like his life doesnt has any value anymore etc. So now he is on that and it dose and it seems to be helping. He is still depressed, but its taken the edge off for him for now and helped with the mood swings he was having. He is also taking a medication now for his heart rate and blood pressure and that has tremendously helped him as well.

They upped his dose of pain meds which he says helped a tiny bit, but today he is really having a bad time. I asked him a while ago if he wanted me to take him to the er room but he said he wanted to wait. I keep telling him not to let it get totally out of control because then it will be very hard for them to get him out of pain again, he said if it gets much worse he will let me take him in.

Last night was not good for sleeping. He didn't sleep at all because of the pain. I slept about 3 hours before I woke up to find him watching me sleep. I feel so bad for him. I find myself frustrated and angry that he has to go through this. Its not just affecting our lives, its ruining our lives. We are no longer having sex because the medications have caused him to not be able to achieve erection. He cant take a drug like Viagra because that would mess with his heart rate and blood pressure. RSD is the most cruel thing I have ever had to see before, to experience, to fight. It has taken a man who was active and healthy, who hiked, rode bikes, took walks and destroyed his body, its taken his life from him, its taken the things he loves away from him, its weighed him down and thrown him into a world full of despair and hopelessness. I can only pray that they will one day find a cure for this twisted disease. All the people around the world who suffer with RSD and CRPS and still there is little known about it.

Our hearts and prayers go out to everyone who suffers from this and to all those loved ones and care takers who are inadvertently affected by it. May you all have relief from this one day!

Its been a while...

So much has happened since I last posted but now that things are beginning to settle down I thought I would give and update and soon will be back in the swing of things. My mother had a stroke about 4 weeks ago now and after reluctantly leaving Dennis at home on his own I flew to Texas to be with my mother. She is at home now and doing much better so I am also back at home. Dennis had family members who took him shopping and checked in on him, cooked some meals for him and made sure he was doing ok.

Well, to update on his health. The infection in his toe came back. So his doctor has refered him to a podiatrist to have something done with the nail so the infection will clear up. Also, his pain management had been concerned about his heart rate and blood pressure. His blood pressure has been riding on the high side of normal and after the 2 hour drive in severe pain for him for his visits his blood pressure would be in the high zone. So they decided that they would need to wait until he was on medication for his blood pressure, but more for his heart rate which is always above 100 and normally around 110. We saw his family doctor about it and she prescribed him a medication to lower his heart rate and his blood pressure. Once this is under control he can have the trial implant. Of course we are still waiting on approval from insurance for the implant, they like to take their time.

His doctor also added a second antidepressant, Celexa. They are hoping it will help him some along with the other one he is taking. He has had RSD about 2 1/2 yrs now and although he has done a good job keeping his spirits up its starting to get to him. Yes he has had times int he past he has said things to me about feeling like he isnt a whole man or how he feels like he has failed at being a good husband because he can't provide for me. But lately I have watched him get more and more depressed. I try to keep him busy mentally but the medications he is on have him forgetting things, they have him falling asleep, he is getting more and more frustrated waiting on the implant because although he knows it might not work at all, to him its hope for a more pain free life that he so desperately wants. Its hard to hear him tell me that he has forgotten what it was like to walk.

Anyway, tomorrow is his appointment with the podiatrist about his toe, Ill try to update tomorrow night about how he is doing and what they did. We wish everyone a pain free and happy day!

Busy busy busy!

I have been pretty busy around here the last couple of days. Dennis is still having a pretty hard time. His toe is still very red, swollen and infected but I think it might be looking a little bit better now. I have to get him a soak here in a few minutes. I had to run all over today trying to get the plates on the car changed and my drivers license changed today. Then I ran to the store and picked up the last few things I need to make Thanksgiving dinner. I wasn't sure if I would make it this year seeing as the RSD takes such a toll on him and we aren't going to be with all the family this year.

Oh I mentioned the other day that he had kept me awake with jerking, twitching and tremors with moaning. That went on for 3 days and then I had 2 choices. I could either take something to make me sleep through it or I could sleep on the couch. I hate sleeping on the couch so I took something to help me sleep. I feel so bad for him. I know he hurts all the time and I cant do anything for him. My heart goes out to anyone who has this horrible condition.

Alright, I'm going to get into my pj's and settle onto the couch and spend some time with him since he is feeling up to it. Take care and have another pain free day!

Infection!!

Well Dennis has an ingrown toenail on the foot he has RSD in. He is in so much pain he doesn't even want to get out of bed. I forced him to go to the ER Room today, he has a much stronger antibiotic now.

The ER doctor... this man was... I wanted to slap him to say the least. When he walked in I told him that he has RSD and the doctor grabbed his foot anyway and twisted it around which made him yell in pain. Then the doctor says "I'm going to fix it by removing the entire toenail". WHAT?! I haven't heard of them removing the entire nail for an ingrown toenail before. I have heard of them removing some of the nail to dig out the ingrown portion. In the end we declined to have this done.

All I could think of was if doing this would make the RSD move to a new area or make it worse in his foot or what. I'm always so scared for him now. When the doctor said "remove the entire nail", Dennis looked at me and the doctor asked "what are you looking at her for?" and I told him "he is looking at me because no one touches him without consulting me and without me believing this is the right thing to do".

I am on top of his medical care. I want to have him with me for many more years to come. If a doctor doesn't like me being involved, well that's just tough for them because that is MY husband. I'm not going to let a doctor treat him in any bad way either.

Anyway, its very late and I think I'm going to head to bed :) Take care and have pain free days!

A little better today

RSD is a roller coaster. Up and down constantly. Today Dennis was feeling better but we think he might be coming down with a cold. He was sick to his stomach last night and today, plus he was feeling a little bit warm too. Ill have to keep an eye on him. It's bad enough to have something like RSD but having to be sick on top of it? Ugh! My heart goes out to anyone who has to go through that.

So we decided to drag out the Christmas lights this coming weekend and try to get them up on the house. I told him I really only want the porch done. The rest is too much work especially when we have no one to help us and he can't get on a ladder if he wanted to. It will be hard enough for me to climb a ladder to just get lights on the porch. When we buy another house we plan to go all out for Christmas including synchronizing the lights to music.

Well it has been a long day for me today as I had a doctor appointment so I'm going to call it a night. Take care and stay pain free!

Another long day

He had another rough day, a lot of pain, which made him fairly grumpy. I can't blame him, I know he isn't being grumpy on purpose so I just try to listen, try to not question him, sort of like walking on eggshells sometimes. He didn't lay down today but instead relaxed on the couch. I went to the store alone, didn't want him to put himself in more pain.

People are really gearing up for Christmas now aren't they? Even our tiny little lawless town has decorations up on all the poles. I guess its about time for us to pull out what lights we are going to put up and get them up on the house. Along with Thanksgiving on the way, my birthday is also coming up. I'll be celebrating the 12th anniversary of my 29th birthday (41st for those who don't count well). Im missing my parents, my husband can't really go anywhere on my birthday without being uncomfortable and in pain, winter is just about here and I'm already feeling some cabin fever coming on.

Well everything will fall into place sooner or later. As for me, I'm off to take a nice warm bath. Take care everyone and stay pain free!

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...