Good Morning,

Thanks for the welcome Jaded. Sounds like you have a great handle on things. Question: How often is your husband mean to you or does he ever make you feel guilty for the decisions you make together regarding the RSD.

Today my wife is off to more doctor appointments. She was very upset because she asked someone besides me to take her when scheduled the appointments. I should mention her doctors are 5 hours away from where we live. She made me feel guilty for not taking her even though she asked someone else. Hard for me to understand.

Another question for you all out there: Do any of your spouses with RSD have a hard time staying within the proper amount of prescriptions for a given amount of time? My wife does, but I don't dare say anything or else she lashes back at me telling me that "you want me in pain".

We started couples counseling on Monday, and she did well. She took the counselors suggestions well and understood everything that was being said while we were there. But damn that RSD and troubled childhood...later that evening and last night every piece of misguided logic came racing back to her. She tells me that she knows what the counselor said, but that is a fantasy world and I need to get over expecting her to change.

I will stick it out with her while she attends counseling because I love her...but if she can't wrap her mind around how she hurts me and my children we will have to make the best lives for ourselves without her. I should also tell you folks that couples counseling was on the horizen before the RSD diagnosis. This disease has simply made everything worse. It is very unfortunate, but I feel that raising my children in a loving household, without guilt and anger, is the most important priority...not RSD.

Thanks!

Hi Matt, I have a good handle on things most of the time, but it does build up and sometimes I just have a day or two where I need to break down too, that was about two weeks ago. It is tough living with someone who is in pain all the time, it is almost like anything that is happening to you is not half as bad as what they go through. My husband is mean when he is severe pain, which was all the time, the doctor just put him on fentanyl patches and that is working for now. He was able to stand on just his right foot yesterday, which he hasn't been able to do for a year. I always attribute his meanness to his pain, and I refuse to believe the things he says because it is his pain talking. When he is out of pain I discuss the things he said to get his real feelings, that has helped us alot. We moved a year ago, staying close to home, my decision. He wanted to move somewhere with lots of land, now we are looking to moving again. I figure I can go to school anywhere and if it makes him happier. He let me choose a year ago and it has not been great living here (horrible neighbor), so his turn to choose. Hubby is always short on his meds, it seems that he gets tolerant to them and has to take more. It makes those days right before the dr appt really bad, but his dr are really good about trying different meds to see what works for him.
Since my husband has been disabled it has been a big change to our lives. I focus on the things we can do now, it is hard, but you have to let go of your past life before RSD, and work on building a new one around the RSD.

thank you...i definitly have a lot to reflect on.

*edit* Let me be very clear when I tell you all I love my wife and am doing everything in my power to keep our relationship healthy.

I really appreciate your feedback and my level of acceptance of this grows each day.

I feel it is not ok regardless of how high her pain is to be taking more meds than her doctor rx for her. This can be dangerous. So by you stating what you did to her it is out of care not that you want her to hurt. Could you maybe go with her to a doctor apt and explain this to the doctor? Maybe he can adjust the meds or add in a safe one.
As time has went on I have really worked hard to change how I respond and speak to my support my mom. I used to not on purpose but say things that I think made her feel guilty or get angry easily. She stated that I did those things and it opened my eyes. It is not ok just because I was in pain to do this. So now when she suggests something I try to be open to her suggestions and know it is out of love. If I am hurting or upset I either say I am not up to talking or try to remind myself that it is not my moms fault and that I need to be calm and cope better. Same with your family members.
This is not easy I know and takes time but I think you both need to speak up for yourself. In the long run it makes things better for everyone.

Good Morning,

Her meds were adjusted yesterday, so I am hoping the new cocktail will have a positive affect on her.

We were given some very disappointing news that her SCS has basically become ineffective and that we needed to stop thinking about her RSD in terms of pain levels but instead in terms of her levels of activity or functionality. We are fairly young and it is really hard to wrap my mind around my wife never ever being able to do certain things with me and our kids.

Last thing to try and get the RSD under control will be the Ketamine infusions. Problem is the treatment that has been suggested to us is not covered by insurance and would be quite expensive. *edit*

Thanks!

Look into fighting the insurance company in order to pay it. This happens all the time with infusions. Often times you will prevail. Talk to her doctor who can help or give good advice. Matt I feel for you and your wife. I can relate to you because my wife has RSD--nearly 10 years now.

Wow...10 years!

How dibilitating is her RSD? What level of activity are you two able to do? Have you raised children around the disease and how has it affected them? How long have you and your wife been together? My wife and I were best friends for about 6 years before we married about 5 years ago. Now she wants the best for me and our kids...and she thinks that will be without her. Sometimes I think she is right, but the fact of te matter is that she is part of our family and needs us. What kind of lesson would I be teaching our children if I judged people by their health or intolerance of others?

I think we probably could pay for the treatment up front (if we could afford it) and then fight to get it paid...but really we just need to have it covered and worry about other costs (co-pays, plane tickets, hotels, etc.)

Thanks!

We haggled with the insurance company BCBS who rejected payment for ketamine infusion, but it was brief, not long at all, maybe a couple of weeks until they approved it with a letter from her doc.
We do not have children, if we did, things could have turned out a bit different. I can't imagine the mess we would have been in. We've been together 30 years. We met when she was 20, I was 21. We are fortunate that she worked for 30 years and eventually was able to receive SSDI and medicare but that is a battle that was stressful and took some years off of me. We did argue constantly and still do sometimes. My wife had her bags packed for a couple of years, ready to bolt, and did a couple of times but came home after a few hours. The reason was she felt the same as your wife---being a burden. But the stress is what really takes a toll on those who have RSD and the trick is to relieve that stress in conguction with decent treatment for her pain. The constant unrelenting pain effects the thinking, always keep that in mind especially where logic is concerned.
However, I did come to the conclusion long ago that even though our long term goals have changed I could not ever leave her. I'll look out for her like I did when she was healthy. So, we changed our plans which aren't bad just not as wealthy. The scaled down plan which has its positives for sure.

As far as activities, well they've changed. My wife can walk even though her RSD has spread to all limbs. Her original injury was her right wrist. One thing I need to learn how to do is go out and have fun on my own because many times she just isn't up to it. She has no problem with me having a night out, its me that hesitates, but not always. If we go out together to socialize somewhere I make sure she has a place or spot she can rest if need be if the music-people get to loud.

If there is anything I do for you guys just let me know.

jim

Hey Jim,

I really appreciate your reply.

My wife was diagnosed with RSD a little over a year ago. She had a SCS implanted in February and a revision less than a month ago because the paddle lead had moved. Now the coverage is causing the RSD to flare instead of calm it down. There had always been hope of a change of pain level before but now it basically seems like I need get used to the idea of it beginning to spread (she already is starting to feel it in her other arm and back) and our new lifestyle as a disabled family.

We are fairly young and have two children four and under. I work a full-time office job during the day and have begun to look for a graveyard shift part-time to try and cover child care for my kids while I am at work. We have just completed the applications for SS benefits. Unfortunatly my wife has not worked for 30 years...but we have heard that she can tap my benefits as a spouse. Hopefully she gets approved the first time and can relieve a little financial stress.

I hear a lot of what you and others here are saying about the pain causing the argumentative nature and misguided logic...but how do we actually handle those situations? With many "yes, dear" and "whatever you say dear"? My wife can read me clear as day and knows when I am just agreeing with her to avoid an argument. Do I have to just get used to a lifestyle where I occasionally know my wife is going to blow up at me or my kids for no real reason? Do I just get used to the occasional mean spirited comment and know that in a couple of hours, or days, my loving wife will return? Doesn't seem like much of a happy life to me.

Thanks!

I just wanted to defend myself, just a bit. I have NEVER taken more Rx medication than I am prescribed. My husband was referreing to an alternative medication that is not an opioid or narcotic, also ALL of my doctor know I'm on the medication and my usage. For some reason that was the only thing I really couldn't understand. I know it's different being a spouse than a patient, but I really just felt like I need to say that I have NEVER taken more prescribed meds than allowed. Thanks for letting me vent.