Hi Confused mom,

 

It is my husband that suffers and not a child but I have gone through the same things and still do. I use to think that my husband was either faking it or over dramatizing it for attention. I would get so frustrated with him and so angry that he kept complaing about it. I could not see anything on the outside that would be causing so much pain! It just didn't make any sence to me. Since I have joined this group and made friends with others who are going through what he is, I have a whole different perspective on it. They have enlightened me dramatically and that has helped me save my marrage and to be a better support to him. The more I learn about it the less fear I have. Now I just accept it and deal with what I can on a day to day basis. You have to understand this horrible dystrophy in order to help your loved one or yourself to deal with it. I incourage you to read as many posts and any articles on the subject as you can and ask every question that comes to your mind for a while until you have a better grasp of all that is involved. My personal experience has been that RSD is devistating to the person who has it and it threatens their independence everyday. This is such a challenge for them to accept that they are loosing some of the abilities that they use to take for granted and it is going to keep getting worse as time goes on, not better. Remember she has only had her independence for a few years now and is not ready to give it up. Pride can make people do things they normally wouldn't. Severe pain can make them behave in ways they never would have before. It can be very frightening for you and them. This is not only devistating to them but you, their families and sometimes even to their close friends. Many people who have a devistating illness or life change end up alone because those around them don't understand or are too scared to try to deal with it too. Your daughtes quality of life will be much better if she has nothing but support around her and people who do understand. Stress will make her pain much worse and at some point she will probably try to shut others out or push them away and not even realize she is doing it. You need to be there no matter what she does. Find ways to communicate with each other honestly but carefully about your concernes, fears, anxioties and frustrations. This will be a work in progress for the rest of her life because as her RSD changes, she will change and so will your relationships. Grow with her.

I have found also that the more I tried to do for my husband, the less he did for himself. You don't want to fall into that. It will only make them weaker and give up. Also, the more I tried to take over some things that he usually did, the angrier he got. You and your family along with your daughter need to talk with her about what she needs from all of you when the pain is bad and she is feeling ugly. She will probably want some space and you will have to respect that without getting mad at her or getting your feelings hurt and she needs to know that it is ok to tell you things like that. Your daughter needs to be free to make her own choices with what ever support you can give. If she is not willing to do what you think she should then let go a little bit and allow her to find her own bounderies. Her body will deffinately tell her when she is doing too much. When she gets tired of hurting so badly because of her own actions then she will slow down and ask for help. Let her do what ever she can while she can and for as long as she can. Some of the doctors and such will say to not do things or use the injured part of their body but from what I have seen in my husband and from what I have read, that is a mistake. RSD will also cause muscle tissue to deteriorate and die very quickly if they don't use it as much as they can tollorate. You don't want that to happen so let her do what she can and encourage her to do so.

I don't know if she developed RSD from the car accident, surgery or from the last fall she had at work. If she developed it from the fall at work then she needs to get an WC Attorney ASAP. Talk to several of them to get the best one. They need to have some knowledge of RSD and be willing to fight for her best inetests and her medical needs. She does have rights. Workmans comp should be paying for ALL of her medical and medications. They will also have to reemburse you for all the bills you or she has paid.

If it was started by one of the others then I am not sure but you should try to find an Attorney to consult about it anyway. It may help. She will definately need an Attorney for SSDI. It will go through faster and she has a better chance of winning that.

She or you will not have to pay up front for WC Attorney or SSDI Attorney. That comes out of any settlements. Most firms offer a free 30 min Consultaion if it is for any of the other things. Make some phone calls to find a few that have knowledge about RSD. Ask lots of questions.

A few members have sent me some links for different programs that might help your daughter. I don't have that info on the computer that I am using but when I get home I will find them in my notes and post them for you.

Being a caregiver is a very difficult life to live. You have to be strong for the ones who are dependent on you and still find a way to take care of your own responsabilities and take care of your own needs. That can be extremely hard to do at times. The priority has to be take care of you first. If you don't then you will be of no help to anyone else. Also think about this. What ever you are feeling and thinking about this whole thing, your daughter is too. Your just on opposite sides of the same fence.

I started a caregivers page at the bottom of the menu list. You should go there first and check out some of the links I have there. It will be very helpful to you. Then go to our boards to read some of the posts on this site to help you understand some of the issues with RSD. I will be adding a page with links for other RSD information sites on here soon so check back. Here are a few that might be helpful.

 

 

 

 

 

I hope that this all helps a little. Please feel free to contact me anytime. I will get back to you as soon as I can.

 

Tami

I am sorry for all that you are going through and I am happy that you want to do wghat you can to help her.

 I am your daughters age and it is tough to have rsd period but in someway tougher when you get it younger because you can't go to school And get the job that you want which just adds to the frustration because you want to feel like a normal person that what most of this is about.We want to be self reliant it seems to be the only thing help that we have any control over.I grew up with this no control over almost anything so I fight for whatever control I can get  no mattter how it annoys others.Just know that she is not doing this to annoy you I am the same way with most things.

You could try telling her that you know that she is doing the best she can and you just want to help her with what she can not finish ask her what you can do instead it may be that she just wants you to be just talk to her.

Part of the problem maybe that she can feel your frusration that she acts like she not trying and that makes it worse. when my dad acts that way and then of course I won't let my dad do anything because I feel he not see that I am doing the best that I can possiably do.

I know that this diffcult for your entire family you just need to try to comunicate with each other and try to be patient during theses difffcult times and knopw you guys are doing the best you can

take care

mirage

hey mom thanks for loving me

you put everything just right.  i am confusedmom7040 daughter and it is so much what i feel. thanks.