Thursday, October 2, 2014

Its been awhile

So its been awhile since I posted. Life got busy, had too much going on and half the time I didnt have 5 minutes to myself except to facebook on my phone a little bit. Forgive me!

So much has happened. We met Dr Atallah who is a neurosurgeon and pain management doctor in Toledo Ohio. He performed the SCS Implant on Dennis. Dennis's pain is much better. Down to a 4/5 from an 8 so it helped about 50% which was the target. He cant walk still. He only got the implant a week ago so he has a long recovery ahead of him. Around Christmas to the first of the year we should be able to find him a physical therapist to help with learning to walk again. He is able to wear a shoe now, for short periods of time. The doctor said it will take "months and months" for the pain to ease on the bottom of his foot because its mechanical not nerve pain. Its caused from not walking in 7 years. His right foot is angled out when he walks (using crutches), thats due to him wearing a walking boot for 7 years. I hope that he will improve from here. He is already sleeping better. He is awake more often, he is taking less Dilaudid 4 pills from 6 pills a day. I keep telling him that a baby step is still a step forward. Ok thats all I have in me today. Hope you have a pain free day!

Monday, June 17, 2013

Struggling but still here!

So its been a while since I last posted for Dennis. Its been a hard road. I'm very happy to tell you that he finally has a therapist for his depression! It's a relief for him to be able to get things off his back. She (his therapist) took him off the Cymbalta and put him on Zoloft. It is already been making a difference in how he feels emotionally. She put him on Vistaril to help him sleep. It's helping him although he still is having trouble falling asleep, but once asleep usually does sleep better unless he is in a lot of pain then he cant sleep. He now takes all his Gabapentin at one time too, in the evening.

After hearing back from insurance that they will not reimburse anything for going to Ohio to have his surgery done, I'm back to searching for places in Michigan. I'm also trying to put together a list of all the places Ive called and talked to only to find out they wont work with the insurance on it. Tomorrow I'm going to be calling a place in Mt Pleasant, to see if they do the SCS implants. Its most likely a lost cause but I have to try for Dennis.

Its so hard seeing him suffer every day. I'm so angry that his family doesn't at least try to visit him, or help me with things for him. I'm all alone trying to figure things out, make calls, get him things he needs. I don't know anyone in the area except family and quite frankly everyone is wrapped up in their own universe and we just aren't part of it. My niece is getting married at the end of summer so I understand some are busy with that. But how hard is it to walk 30 feet and tell your son you love them or tell your brother I love you. That's a part of RSD/CRPS, it's heart breaking. Your family, your friends, they all slowly disappear. I have grown to hate this place where we live. The town, the state... I cant tell you how badly I would like to move. But God seems to have other plans for us right now. So Ill keep pushing through day by day and just try to be here for Dennis. Ill write more when I have some news. Peace and healing for all!

Monday, January 10, 2011

The new year...

Well here is hoping that the new year will be better for us. We are still waiting on info on this doctor up in Bay City that his nurse wants him to see. I'm praying that he will work out the way we need him to so that Dennis can get his surgery he so desperately wants. Day by day goes by and I'm watching him get more and more depressed. He is going to start getting therapy for chronic depression soon, hopefully he will start sometime this month. I think getting him the right meds and getting him some therapy can maybe help him get out of this mental slump he is in. 2 days this week now he just stayed in bed most or all of the day sleeping. Some could be the meds he takes sure, but I think its a combination of meds and depression. There's been no change in his condition. He slowly gets worse really. They slowly up his meds. He hates taking them. He has a couple of doctor appointments this week, one is to get a new cam boot to replace the one hes been wearing for the last 3.5 yrs. He will be happy if he can get a shorter one that's cooler in the summer. His foot and leg gets so hot hes just miserable in the summertime. Anyway, I'm watching him sleep and just wanted to post real fast. If anyone's out there... take care of yourself!

Monday, August 2, 2010

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!