Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 06-14-2013, 09:14 PM #11
finz finz is offline
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TK,

I'm so sorry that you are dealing with this. That someone who has professed to love you through sickness and health would kick you while your down, just infuriates me.

I would try to focus on YOU right now. You've got enough on your plate with the scs situation. When your own health issues are a bit more stable, I would revisit this issue with your husband. If you aren't already seeing a counselor, I would start now. Confronting your husband, which for me would HAVE to happen at some point, can end 1 of 3 ways.....it's either going to make things better/get things back on track, stay the same, or make the option of staying with him totally unacceptable. I would want to have some emergency plans in place incase that conversation(s) went horribly wrong.

As Bramble said, you've been dealing with the RSD monster, we KNOW that you are strong.

Take care of yourself....and know that you ARE supported, here at least
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Old 06-14-2013, 09:30 PM #12
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1. I wonder why dh told you what they said?? to gossip and hurt your feelings- because that's what happened..

2. Did he have your back and defend you to them , or just keep quiet, or agree with them??

But, I would try to not worry about what they think & say, and when you can focus on your & dh relationship..
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Old 06-15-2013, 04:09 AM #13
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I think Az-Di made a good point about what if the boot was on the other foot...

When you marry someone, you BOTH make promises to each other. "For better, for worse. In sickness and in health..." If things had been different and he had had an accident and lost a limb, or gone blind, or contracted cancer or any other long-term loss of health, would you have looked after him? Would you have given your love and time freely and gladly because you loved him? Would you protect and defend him from hurtful comments? Would you try to get his loved ones to understand things better to make his life happier? Would you hide any feelings of frustration from him and try to be cheerful? Of course you would.

Conversely, would you blame him for his condition? Would you make him feel guilty for you having to do so much? Would you listen to those who spoke badly of him, and then pass on those remarks to him, knowing how much he would be hurt and his relationships with those people damaged? No.

My husband went through a patch a while back of just being miserable and put-upon, and we ended up talking it all through, and I asked him whether he thought I would stick by him if it had been him instead of me? He got it, and although he has down days, he definitely tries harder to remember that I didn't choose this. I am lucky, he has never told me I am a burden. I was thinking of how you describe things with your husband, and how I would feel if it were me.....my overwhelming response is that the disease is bad enough, I wouldn't need the added emotional trauma of daily life with someone who made me feel so bad.

Only you can decide. But don't be afraid of making a tough decision where any relationship is concerned. If someone in your life is toxic, although choosing to shut them out might be the hardest thing ever, think also of how much better you could feel without all those bad feelings crowding in on you ever day.

Maybe he needs to know that you DO have a choice. That you do not view yourself as a burden desperately shackled to him. He might think you can't cope without him. My bet is that you could. Sometimes they need to know that you value yourself more than they think. The shock of realising he could lose you might trigger a major rethink, it might not, but I think you could feel empowered and better about yourself...

You deal with this every damn day, while bringing up your little daughter and living a life as worthwhile as any. That makes you one hell of a strong individual. If he can't see that, then he is an idiot and doesn't deserve you.

Sorry. Just makes me mad. Didn't mean to be so wordy

Take care of yourselves everyone, and have a better day.

Bram
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Old 06-19-2013, 01:12 AM #14
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I just recently went through something similar to what you did. I had a particularly bad day and spent most of the day in bed. In the evening when I TRIED to have a normal conversation with my husband of many years he groused that perhaps if I woke up early enough to talk with him, we could have a normal conversation. I retorted with "perhaps if he had my disease he would understand that I have bad days".

Then he said "I wish I had your disease, then I wouldn't have to work". Talk about a punch in the gut. I wouldn't wish this disease on anyone.

In my mind, I'm justifying his remarks as coming from pressure about being the breadwinner, the insurance provider, etc. But he is older than I and although this disease is awful, I believe that one day I will be giving him physical assistance to the best of my abilities. And I hope that I have enough character to not complain to him about what a chore he is to me.

This disease takes a toll on relationships and marriages. I am mentally prepared that if he wants out, he knows where the door is. I don't need someone with attitude in my life and I strongly believe that G*d provides for us. With that said, I also believe that his verbalization of his feelings may have provided a pressure relief valve to him.

I removed myself from his attitude and went back to bed. LOL. Tomorrow is another day and I'll see what that brings.

I don't know if this helps you but just know that you are not alone.
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Old 06-19-2013, 02:16 AM #15
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Default I am so sorry

People can be so stupid, crude and heartless. They really have no idea what this is like. I would like to see the walk in our shoes, for a week, I bet they'd jump off a bridge.
Don't for a SINGLE minute think that it's true. And the next time your husband says something like that, ask him if he would act the same way if you had cancer. Or if he was in the same position, how he would feel having u say that to him.

I think sometimes it would be easier to deal with it on our own. Maybe then I could Medicaid or something and at least have medical coverage and possibly a CNA to caregiver to help around the house. ur condition needs to have more media/public awareness.

It's ridiculous that so many people have this, and no one around us including most doctor seems to have a real clue abut how intense the pain is or how it can truly destroy our lives.

I am so sorry the people around you are completely jack asses. I wish there was something I could do other than say I truly know how you feel....

I hope your scs heal well and works a little miracle for you! I really wish I could help you in some way. But try and stay strong. you do still have your little one. She loves you unconditionally, so there is love in your life
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