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!

We have a date!

After all this time we finally have a date for him to have the trial stimulator put in yes! Its not for a couple of months yet, May 13th! So he will only have the trial in for 5 days. Gets it that Thursday, then the following Monday he will have a PT check to see how much that improves him, then on to the doctor to have the leads removed. Then its up to the doctor to figure out if the trial implant worked well enough to have a permanent one put in.

Well I pinched a nerve in my back today and spent 2 hours at the chiropractors office and my back is killing me so I'm going off to bed. Have 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!