Wednesday, November 18, 2009

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!

Sunday, November 15, 2009

Another sleepless night

I am so tired right now. Last night Dennis kept having tremors, jerks and twitches. Then he would moan, roll over, moan... When I know he is in pain I just can't sleep. It's like I keep myself awake in case he needs me so I never really drift off, if that makes sense. I feel so horrible for him. So helpless.

Last night he told me that he was really glad he and I are still together. I asked him what he meant and he told me that he thought I would have left him by now because he can't be the man I married. That made me want to cry that he feels disappointed in himself like that. I told him that I married him for better or worse, that I love him unconditionally. That in 2003 when I had cancer and lost the ability to have children, became extremely depressed and had no idea if I would even survive all of it and he stood right there by my side. But this makes me aware of how vulnerable he really is. That he has fears I would possibly leave him due to this disease. RSD has really changed our lives.

So here I am, in the living room, I have him in direct line of sight and can hear him if he needs me. I thought maybe he could sleep better if I got out of bed. The alarm will go off in a little over an hour now. If we didn't set the alarm and force him to wake up, he says he would sleep forever. I have seen him sleep 18 hours at a time. All the heavy medications he takes all of the time, he can't keep his eyes open sometimes. He is also starting to have depression. Although he is on Cymbalta now which has helped some I think, some days he is a bit grouchy, some days I can tell he is simply down in the dumps. I wish there was something... anything I could do to help him get out of pain.

I think it's time to watch some television and take my mind off all of this. Take care everyone, keep up the hope!


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!

Wednesday, November 11, 2009

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!

Tuesday, November 10, 2009

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!

Monday, November 9, 2009

Getting some rest

Well today has been a rough day for Dennis. He didn't sleep very well because he was in so much pain and grouchy this morning because he didn't sleep well. Right now he is taking a nap. I hope he actually sleeps. Sleep has been hard for him over the last 2 years. Mostly due to pain but there has been the occasion he had nightmares like when he took Lyrica. Boy those days were not fun. They were severe enough nightmares that he would wake up and be so upset over it he wouldn't tell me about them. So I'm thankful today, that he can rest some. He took a pain pill and laid down.

He isn't happy about his current pain medication. He has been on Morphine for a few months and that has helped the pain so it's not so severe. The problem is, when some people take narcotics they don't urinate like they are supposed to. He said it's like he knows he has to go, but he has somehow forgotten how to go and the muscles won't work with him. So they are trying him on half morphine half Oxycontin. He says he doesn't get near as much relief from that than he does all Morphine, but it's helped slightly with being able to relieve himself. It's like it's a lose/lose situation. Always some side effect from something and it keeps you from living a normal life. He has so many medications he is taking that sometimes its even hard to tell which drug this side effect is from and which one that one is from. Hit and miss is what it amounts to.

We didn't get the house we wanted to rent. So until spring he will have to endure the 2 hour drive each way to the doctor because I can't move us in the snow. It was hard enough when we first moved here and there was snow on the ground. Well, there was 3 feet of snow on the ground. I am not going through that again. We will just hang in there and maybe int he spring we can find us a house closer to his family and his doctors office.

We are also waiting on the SCS implant approval. Actually it is a 2 step plan. First he has a trial implant. The leads will be implanted and the wires will come out of his back, be taped down to his body and then go into a control box. He can try the different settings out and see how well it works for 5 days. If he gets 50% relief (We are praying for this) then it will be a go ahead for the permanent implant. Once he has the permanent one, 2 months of recovery and he can then start physical therapy to try to get some type of mobility back. He hasn't walked in 2 years so it wont be an easy road for him. Plus they have already said that he will still have to take medication and he will still have some pain. Our hopes are that he can put on a shoe and he can possibly walk with a cane. He said he would love it if he could just put on a shoe and be half way normal looking. I would love it if he could walk with a cane. Just to be able to go somewhere with him and hold his hand while we walked. You don't realize how many little things you miss out on until you can't do them anymore. Just cuddling in bed, we no longer do because I don't want to chance bumping his foot which would send him into a sleepless night. He hasn't been able to drive a car, so I do all the driving. I would love to be able to relax when we took a drive and look out the windows at things we pass. It's not his fault that this happened to him and I don't blame him for anything. But I miss life in the normal sense. Of course things will never be normal again and I understand that. But it would be nice if it could be better than it is. I hate seeing him in pain. I hate taking showers just to cry because I feel so helpless and there's nothing I can do for him. But we have hope. Hope that things will get better. Hope that someday there will be a cure for this horrible condition.

I'll keep this updated on the SCS implant. Ill be taking video and pictures although I'm not sure if I'll be able to get the video posted. When he has it done we have to stay in a hotel in case he has to go back the next day. I keep telling him it will be alright but he is pretty nervous about it. If anyone has had the SCS Implant would you mind leaving a comment? Maybe if he hears from others who have been through it he will feel better about it.

We hope everyone has a pain free and safe day!

Saturday, November 7, 2009

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!

Friday, November 6, 2009

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!

Thursday, November 5, 2009

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...