Tuesday, March 9, 2010

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!

Monday, March 8, 2010


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!

Friday, March 5, 2010

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!