Hi KB,
I think you are an amazing person for reaching out to others in your time of need...not only for you but for your husband and child too. I know it is hard for others watching people with rsd because most people don't know how to handle it nor do most peole want to. I guess some people figure if they don't acknowledge it then it may not be there haha. I try to use humor in my life esp when I know people are uncomfortable and don't know what to say. It seems to break the ice so to speak.

I understand where your husband is at in his journey with rsd. He is in the first year and that is a year filled with anger, so much physical pain, and the unknown. I cried the first year so much because I was a single parent with a 16 year old and no one to help us. It was terrible. But just take things one day at a time. If he doesn't want to talk about things then after your son goes to bed and your husband had been lying in bed and in a better frame of mind just talk to him. This time is the best time for no interruptions and it is calm and peaceful. It is all about talking how you feel. Six years later I really talked to my son and I realized he gave up alot to become our family caretaker at 16 but I never realized to the extent he did so. I have spoken to a woman who had a child and was constantly ill for years and still is. She has a tremendously supportive husband and family and the child grew up fine (She's 30 now). It seems as though when children are young and their parent gets ill they are better able to adjust to it than say my son was at 16. He was used to me being extremely active and doing all kinds of sports, fishing, etc. with him since he was born so it's been real hard for him to see me lie in bed everyday in severe pain.

I did have another thought once I read how your husband doesn't want to talk about it. Maybe you can find a disabled veteran or someone disabled from your church or area that could talk to your husband on a regular basis about his trials in life. Your husband has to come to the "new normal" that you both have in your lives. Having another man who has already gone through it already may help your husband see things in a new light. It may get him through the tough times now so that you both can get through the hard times together as a couple and raise your beautiful son (and I'm sure very active as boys can be haha) as well. When I was not able to work which was right away I looked at it as a good time to bond with my son. He would come in my room and watch a show with me and we could talk about that. It made him feel still close to me even though I could barely get out of bed. I know rsd and the whole nightmare surrounding it is unbearable most of the time but prayer and humor are what has gotten me through each day. Also, I don't know if you all are pet people but I have an amazing cat and little dog who keep me laughing each day. Maybe you could adopt a cat (cause they are easy to take care of more so than a dog you need to take out). When I am real bad my cat and dog don't leave my side (I usually have one on each side of me). Maybe a cat could lie in bed with your husband (because animals can sense when a person is ill) and he can pet him which helps your hands and arms with PT. My pets are my PT. They keep me moving. When he talks to the cat he is releasing his anger (and lowering his blood pressure) and who knows this might be the thing he needs and your son will love a pet I am sure. Even fish can help. There have been times where I could not get out of bed and I had a fish tank and just lie there looking at them. You would be surprised how neat they are to watch. It was like a science experiment to me to watch their behavior.

Hang in there and let us know what we can do to help you and your family. We are ALWAYS here for you. Listen to what people say but then you need to make decisions on what is best for your family.
Take care,
kathy d

Kathy-
THANK YOU so much! The support that I have received from this group has been amazing.
I Love this group. As for my son MJ he has a dog but the dog is more in love with me then anything. We even have a fish. LOL MJ has an older sister that just moved to Texas a year ago today. and I know that it is hard on him because they have never been apart.
And now on top of this new job that I have I feel helpless because MDH is having to step up to the plate as a parent through the pain. I feel bad but we us fighting for that comp check there is no way that I can take the time off and be home more. We have lost our car and i work 20 minutes from home and I m paying for some one to come get me each day and I am working as many hours as they will let. I hate to say this but this RSD has destroyed our life. We have no car and we cant afford a babysitter or a nurse to come in and help with mike. My poor son has not had a home cooked meal in over a month. He told me last night that he hated microwave meals. All i could do is cry. But I know what i have to do in order to keep a roof over my family's head.
I keep a smile on my face and a weight on my heart that I try not to let my son see.
I am 100% lost and confused. I have to deal with MIKE MJ WORK and SCHOOL
But if it was not for this group I think that I would have packed my bags a month ago. I am at my end

Hi Kb! Sorry I havent been in touch, we have had other drama going on with a harrassing neighbor! as if we don't have enough to stress about, but that is another whole problem. My hubby often becomes mean when he is in pain and can not deal with things properly. When he is having a "good" day I try to talk it over with him. I ask him if it is really me or if he is just stressed with the rest of his life. He tells me that it is not me and that he really appreciates me and all I do. So I try to hold on to that, all the other crap I just try to ignore. It reminds me of someone who has been drinking and says things that they really don't mean. Every day we are getting divorced, but I just let it go and it seems to be ok. Well I should clarify, that most of the time I can let it go. As I told you a couple days ago I had my breaking point. Just a bad day for me where everything finally built up inside and I had to let it out. I work out and clean the house and be moody to myself. My husband picks up on it but I tell him nothing is wrong. Then the next day when I am in a better frame of mind I explain that it is not him, it was just an overwhelming day.
Financially I think has been the most stressful. We are still fighting with disability, hopefully we will find out in the next month. I don't understand because he is unable to work, but apparently disability is difficult to get, or just takes a long time to get. We never know where our next dollar is coming from. But we have made it work. I am not a big stresser about money, but hubby is, and that makes it hard. I am in college but not working because of the time I have to spend taking care of him and the kids.
Like Kathy said, it is hard and your husband has to go through all of the stages of accepting the things he can and can not do. You both have to try and remember that at least you have each other, rely on each other and let it bring you closer together, instead of pushing you apart. But I know how hard it is to really do that! Communication is key. I find that my husband really likes to know how much I appreciate the things he can do, like when he brushes the kids hair or something. Although we go all day taking care of everything, without a thank you most of the time, you have to be extra strong. I am sure your husband really does appreciate you, but he may not know how to express it, he probably feels frustrated and mad because of the situation he now has to live with.
Hope that today is a better day.

Hi KB,
Sorry but I just had a chuckle because everything you wrote (except about the husband) sounds just like my chaotic life!!! Haha. Thanks I needed that laugh. My dog is sooo in love with me too (Chihuahua Pom mix) that he doesn't like the cat on the bed when he is there with me. He gives the cat the dirtiest looks...it is soooo funny. I have had a 10 gallon fishtank with only one fish!!! And it is small. I had others but he kept eating them all and I had his dad and mom too!! I had to give up my car because I could not drive anymore. It was sooo hard to do but I could not afford to pay car ins each month and it was just paid off. Also, the month I got injured I only had one more college course to go before I got my Bachelor's Degree! It only took me 20 years to do so. I did get it but never could walk down the aisle due to my injury. But I did it and you can too. You are just getting side-tracked for now.

You can say it that rsd does destroy your life (I came close to losing my home in Feb too). Heck, I don't even remember what it is like to NOT have pain. It has destroyed me financially among other things and my son is struggling to help me when he can. Every month for years is a constant struggle. I feel bad that this is his life (and mine too). It has been very difficult being a single parent, ill, and trying to raise a teenager on my own. I have chased him with my cane a few times over the years (albeit very slowly)!

Can you try and get some state assistance for someone to stay with your husband and young son? It took me four months to get an aid (I'm on my third now and that is a whole other story about people helping you). It seems like your situatioin calls for it. Also, maybe check a nursing school or I know high school seniors do community work as part of their program. Maybe someone would be able to volunteer for an hour or so a day at least your husband could get a break and then would be rested before you got home from work.

My son also said the same thing about microwaved food (and eating out). Funny but sad. He told me it has been years he has been doing so and his eating habits are horrible and he hates alot of food. I feel so bad for him. I did "try" to cook a dinner today and it only took me 11 hours to do so haha. I have only done it one other time in the last eight months due to my injury while getting ketamine in the ICU. Eleven hours to make one meal that used to take me a 1/2 hour. It stinks but I have to keep lying down in between it all but at least I did it (I only threw my canes on the floor once today from being so frustrated).

Know that you are doing an amazing job with everything going on! You also need to do something for yourself. I learned that you must take care of yourself in order to take care of others (It only hit me when I was in my early 30s). Even if you take candle lit bath before bed. You just need to wind down for your own health and sanity. I do put myself in "time out" when it gets to much for me. I go in my bedroom and turn all the lights off and just cry in bed. After a bit, I get back up and keep on going.

Everyone here deserves a medal because of all we deal with each day. I have to laugh when I hear others say "Oh, I need a break" and I would change lives with them in an instant to have their problems versus the ones I have. haha. Hang in there and we are always here for each other. We need lots of support to get through it all.
Love to you and all,
kathy d

I just skimmed the responses so I am sorry if I repeat something. I think you need to continue to tell your husband how you feel and that you feel he is not treating you well. I had some issues with my mom where I would have outbursts. This was not fair to her because she goes way beyond the call of duty to help. Anyhow finally she said to me that me being in pain does not give me a pass to have outbursts. She also stated how my condition impacts her that she cries from mental pain and wished she could take this from me. It really put things into perspective that I needed to treat her better and also support her with my condition. Things have changed for the better since both of us don't walk on egg shells as much for each other. I encourage my mom and am happy when she does things for herself and has a life so to speak outside my condition. It helps her cope with me.
It is not fair for him to blame you regardless.

I wanted to say thank you again to everyone that has helped to support me in my time of need.
I wanted to say sorry that I have not read any post or posted in a while but I got that new job and WOW I am doing a lot of working and then i come home and I am still working and it is not stuff for my home life it is still my work world LOL. But it feels great to be back at a job that I love.
MDH had another Dr appointment today and the Dr that was trying to day that he DIDN'T have RSD is now singing a different tune! We have been to Dr after Dr after Dr and they all say RSD but this one Dr says no but today after just touching my husbands leg it put him in tear he says OK OK OK there is NO doubt that this is a bad case of RSD. FINALLY everyone is on that same level. He has surgery again next week!
But on the other hand...3 weeks ago his workmans comp was cut off and of course we were not notified till last week by his lawyer and now we had not budgeted for the lose of this money and I am swearing that bills like NEVER before. I am going to have to BEG my boss for more over time. I can't believe this crap and now the lawyer is saying that it will be at least 3 weeks before he will get MDH checks back to him. I hate workmans comp it is worthless I swear. this is the second time that we have been cut off without notice and last time we lost our house and I cant go through that again. We have already lost our car and I am now paying $60 a week just to get to work and back. I cant believe this. All i can do is just pray that the good Lord above with take this weight off my shoulders and carry me through this rough time in my life.
But on the good side again Mike and I are getting along a little better.
I just we will just have to see what next week brings!
You all are in my thoughts and prayers! You all are so wonderful!

By the way can I please get some peoples opinions on SCS. I am considered about him doing this he has researched it and spoke with people about it and they all say it is great but I hear something else.

Good Morning KB,

I know exactly the feelings you are going through. My wife and I are early 30's and have two children four and under and my wife suffers from RSD in her shoulder and arm. When reading through this string, I got the distinct impression that you and I are living very similar lives.

My wife has and SCS implant. Her implant surgery was in Feb, but then her lead moved and had a revision earlier this month. Her results are mixed and hard to quantify because it will often depend on her mood. What I can tell you is that her activity level is equal to or less than before the SCS. Her outlook regarding getting any part of her former life back is much dimmer than before the SCS. I can only think that this is because it did not give her the results she had expected. Without a doubt, we fight more often.

What I am observing in my wife is that the RSD will amplify not only pain but also any feelings, emotions and insecurities she may have felt before. My wife had a rough childhood and adolescene and it was always a struggle before to assure her that she is deserving of love and affection. Now with the RSD it is nearly impossible. We don't really touch each other anymore except for the 1-2 hours of backrubbing I give her most nights...but that is not considered "intimate" because she is in pain. I get told frequently that I never touch her anymore. That one is hard for me to rationalize because from the moment I come home from work until I go to sleep I am either spending time with my kids or rubbing her back. If I try to rub any other parts of her body, she tells me it hurts and then redirects me to the lower back or neck. Anyhow, she tells me almost daily that I need to divorce her so that I and the kids can start looking for a new mommy, or that she is an incredible burden on all of us, and asks me constantly why I keep her around. Her lack of confidence in my love pains me worse than her being bedridden ever has.

Thanks for letting me write...I'll check back with you all soon.

Hi Matt, welcome to the forum! Glad you found us! I have found such relief from posting on here, it is very therpeutic to vent sometimes. My husband has had RSD for 3.5 years, and it is getting worse. It is in his entire right side, internal too, and he feels his left side tingling, plus the added stress he puts on his left side using it. He tries to be positive, but it is hard. I can understand your feelings toward being intimate. I had to adjust because he is either in pain or feeling okay and doesn't want to get in pain, no win situation. I do enjoy spending time with him and that has become our intimate time, talking or just watching a movie together. My husband will often say that we would be better off if he wasn't around but I try to show him how much we still need him. The kids always do too, he just started playing a game with our 6 year old where they write notes and hide them around the house, it something that the two of them can share that is special and she loves it!
Well I just wanted to say hi and I don't get on here as often as I would like, but I check in too so if you ever want to talk you can write on here or message me.
Hoping today is good day for all

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.