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!
I also have RSD and started a blog today ... and so was researching others with RSD / CRPS blogs.
ReplyDeleteI think starting a support group is a great way to support and meet others with this condition and their loved ones as well.
I too am starting one in my area (in Canada) and have started by contacting PARC (public awareness of RSD in Canada). I also want to attend a few support group meetings in another town to see how they function. Issue is, as you know, car travel isn't easy.
Perhaps consider starting a support group for loved ones of those with RSD ... you can help each other and support one another to help make you stronger for your loved ones. As hard as this is on us, I sometimes wonder how my husband puts up with this... I can barely put up with it some days. He shoulders a different type of pain because of this.
I've been living with RSD for about 1.5 yrs now - so still new to this.
Hang in there ... for both of you.
I can't say more than a solemn prayer that you and your husband will endure the physical, emotional, and psychological pains you are suffering right now.
ReplyDeleteMy chronic diabetic nerve pain in my limbs is somehow least in degree compared to RSD, but it is taking a toll on my total outlook in life. But let's hang on! God is good and soon you and especially your husband will be fine. God bless!