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!

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!

Happy Holidays!

We are both relieved to have made it through Christmas without too many bumps. We were so lucky to have had some of our family visit. His sister Tonie, her 5 kids and their mom and dad came the day after Christmas. We had  a lot of fun, played games, talked and laughed a lot. I think everytime I tried taking a picture someone was stuffing their face with food *grin*  We played Mad Gab. I got it for Christmas and I have to say, Im really very bad at it lol I did however guess one eventually.

Michelyn played the piano and talked to her "boyfriend" Seth *giggle* She couldnt go 5 minutes without texting him. Here is a picture of Seth... He's the one in Michelyn's hands...

We had a suprise guest too! His grandfather was able to come and visit as well. We were so lucky! So we actually had 5 generations in one house! Not a lot of people can say they have done that. Right to left is David our son in law, Dennis, Michael, and Dennis Sr, his dad, then his grandfather and Devon our grandson.

We had his daughter Camie here with her husband David and their son, yes, our grandson! Devon is such a cutie and we love him to death.

Michael brought his fiance Tara. It was the first time we had really had a chance to be around her. Unsure at first what we were getting into, it turned out alright. She warmed up during the day and I have to say she is a nice young lady. She can be very playful and has a good sense of humor. It was nice getting to know her some.

Lexi did some singing and she is growing so fast. She is Tonie's youngest and 10 yrs old and cute as a button.

We went to see the Christmas light show just outside of town and Dennis had a blast with Devon. He's really enjoying being a grandpa!

So we found ourselves surrounded by family and love this year. I missed my parents dearly as they are in the south. I know they were here in their hearts though. I was just as thrilled this year as anyone else, I had everything I wanted. Someone that is close to my heart was here this year who hadn't been in some time. Camie, who has become so special to me, she is a wonderful woman and I love her so very much. Yes, we are very lucky indeed!