NeuroTalk Support Groups - The isolation of RSD

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)

- - The isolation of RSD (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/121106-isolation-rsd.html)

Some wonderful suggestions. Please make some new friends. Wouldn't make it without family and especially church family. Look for upbeat people who like to laugh. the best pain killer in the world. take care

Thank you , I definitely cried.

Quote:

Originally Posted by keep smilin (Post 650285)

Dear dear dc...

I am right here with you...I want to first say try not to be too hard on yourself and what you are experiencing and feeling is so valid and real..It is only a small portion of our RSD illness and what it does to us. But it is a very sad, emotional portion that I think hits us very hard..the feeling of being alone in this and dwindling down to it is really just us..Others can walk away no matter their connection with us cuz in the true sense of the word..it comes down to this is our battle to fight not theirs.. only the caring heart who wants to be part of this and will be as no one has to be part of it... Honey..let me say that we have all shared in this barrel scrapping feeling..more often then we all want to... If I can help you some way it would be in saying ..please..cry.. let it out..explode..hit, slam..cry and when it is all said and done...re-connect with your heart..fully knowing this is not fair, oh god, it is not fair but we are still blessed cuz as you said it is ultimately up to us to search and come to terms what really warms us..what will it take for you to feel better once you have exploded?? There trully are others who are willing to take us "as is"..and look past our disadvantage and ride the waves with us..I have become more defined thru my RSD illness cuz now more than ever how I feel about life..sad but stronger cuz I know what is happening to me..and I know I need support and love and as each days passes I will take this curse as a blessing.. as I don't believe I could have been so strong and well defined otherwise..Hold love and hope in your heart, my dear... as only a suggestion but when I am feeling down..I make myself feel better by thinking of and doing something nice for someone else..something unexpected like bake cookies for a neighbor or someone you care about..totally unexpected (possibly your sister now)....it will warm your heart..and let others know that we still care and we always have room in our heart to welcome that same surprise and unexpected "gift" in return..Love and friendship will find its way back to you 10 fold, in the mean time allow yourself to become unraveled as you have every reason to..then calmly collect yourself and move forward..My only wish is that you lived right here next to me as my neighbor because if you did..I would be the one baking cookies and delivering them to you today, honey..No worries you are perfectly normal and give your sister time, she loves you to the moon and back...and she is there for you..and don't feel guilty for depending on her as if the tables were turned I know you would do the same for her!!

Bless you, honey and heres to a brighter day just around the corner...I promise it is not far away...

Much love, Kathy:hug:

it is not fair but we are still blessed cuz as

[QUOTE]"you said it is ultimately up to us to search and come to terms"

Kathy, this is message is so thoughtful helpful giving, and I did have a very big cry.. I did need it and didn't realize how much I was hurting.
The cry,was because of how caring the posts are and the great comfort being understood brings. and also not being alone. alone with isolation. And I'm sure a thousand other things I cant explain right now.

I think you are so right too, that really only those of us with rsd understand just how big our losses are.. I just cant thank you enough.=-for caring , sharing, helping..
I should have mentioned before how grateful I am to have all of you as friends. to be able to come here and receive advice, support, love and direction-which has often cared me through, especially now , this being my worst time so far- again so much sincere support and care. I- I feel blessed. I just can not thank everyone enough.
Also, Kathy, in regard to giving to others, such great advice.I cant believe you mentioned the baking in particular,Family and friends used to love my baking- it is so amazing to me that you mentioned this .. and it is something I could still do. Seriously, each family member used to have a particular cake they loved. I would bake for almost every family occasion. I truly enjoyed it. It is such a wonderful idea.

Thank you again from the bottom of my heart.
Sincerely, dc

[QUOTE=dreambeliever128;650334]Again I wrote a post and erased it. No wonder my stress level gets up when I use this laptop.

I wanted to ask you if you thought about doing volenteer work. My Dr. got me involved in volenteering at the Vet's home and I love it. I go out and exercise with them several times a week, then we do coffee time and I am helping them with using computers. There is never a dull moment there. I listen to their stories of their lives and work puzzles with them.

Ada, thank you so much for your post. the volunteer work is a great idea, i have thought of it, especially with my black lab hannah, she is wonderful with people. What I need to do is get moving and do it.
I greatly appreciate your thoughts and encouragement. I was so touched and encouraged by the posts here.
Sincerely, dc

[
Yes, RSD has ruined my life too, but I concentrate on being grateful for various things, try my best to be creative, have goals, and time frames to reach goals, goals of weight loss-3200 mg of neurotin for a long time brought with it weight gain. I'm walking,refuse to give up -goal of traveling again- it's the fight of our life. Let's help each other to not give up.
One of your friends, loretta[/QUOTE]

Loretta, thank you. You certainly understand the isolation. I understand how you r successfully working through it. When I hear of someone that has had rsd for years such as yourself i guess it hits me two ways- first - it really is going to be here forever, so upsetting, but secondly here is someone that has made it and brought quality to their life. I am so happy u were in remission for your daughter wedding, what a blessing. I try to walk too- some days as you know you pay a bigger price than others but I still go.I am sorry for your pain too- full body and internal. I have the same and know exactly what you are suffering with . and your right is is the fight of our lives. this is certainly helping to keep me going. Loretta, I had the same problem with Lyrica- I did gain the 20 pounds at first - then lost it slowly. Now the carb craving is not as bad as it was in the beginning. I hope it works out that way for you. Thank you again so much. Sincerely , dc

I think with getting out and doing things depends on how far along you are with controlling the RSD. Up until 3 years ago, I couldn't have done it. At least with volenteering we can sat our own pace. We can't get fired for not showing up.

Do you have kid, grandkids? I'm very involved with my two Grandson's. Tonight I am going to a spaggetti dinner to raise money for Devin's trip to Tennessee this month. His group of 6 took 2nd place in the state in acting. They wrote their own play and performed it. They go to Knoxville the end of this month to go against the other 49 states and 30 countries. I wish I could go with them but I can't do that. The boys spend a lot of time here and I am trying to help Dustin decide what he wants to take in College after he graduates next year.

As far as volenteering, I really enjoy it. The vets have war stories to tell and they are very inspiring. They are very upbeat.

You can also PM me too if you want someone to talk to. I am also having fun on facebook, hooking up with relatives I haven't seen in years. Think about that too along with coming here to talk to people.

I gained 15 lbs. on Lyrica and have only been able to get 5 of it off.

Do you and your sister go out any? Maybe she could help get you out more.

Ada

Quote:

Originally Posted by dreambeliever128 (Post 651047)

This is such an important post..Thank you dc... The word creative is so what it is about..We have to fill the void..I call it the hole in my heart..that RSD leaves us with..And I think unless you are in our shoes and on our side of the slow rolling track..you can't understand it...I have said that this hole is so big and deep that I can feel it when I move sometimes..Again..it is part of the deck of cards we have been generously been dealt, BUT it is how we play those cards that is important...we don't have the option not to live with this animal... so we have to figure out what does it for us all.... Keep in mind even tho we fill the void with things that do warm our hearts... we will still have times where the hole still breaks thru... just not as often...that is to be expected...but in the mean time..find the joy in your life andsay what you need to say..Oh boy ain't that the truth...cuz we no longer have yesterday..we are not promised tomorrow..we only have today.....

Here is my favorite saying.... LIFE is not about waiting for the storm to pass..... LIFE is about learning to dance in the rain... OMG so true...

I luv ya family!!

Kathy:grouphug:

What treAtments and meds have u tried. U have regional or full body rsd. What part of Florida are u from? Stay positive I know it's hard. Better days are ahead of us :)

Quote:

Originally Posted by CZZ74 (Post 650277)

what treAtmentd have u tried and what meds Are u on. Maybe u need something that will help u. What part of florida are u in. My dad lives in safety harbor . Going there to visit next month. Live there in the next couple years i hopea disagreement with my sister recently, she didn't speak to me for three days.
I learned a great deal in those painful three days. She does everything for me. The only person I really have to talk with.
I never want to be this dependent again.
I am way to isolated. I need to get out there and try to make new friends .
I need to find something, an interest I can pursue that will get me back in the world.
The social isolation of RSD is mentioned in every article.
Until this happened I did not realize how alone i really was and dependent since my husband left.
I also realized through this that I have got to get proactive and try to save myself. fill my time with something positive and interesting.
Kathy you were worried about me posting sad ones. I think I hit bottom finally and saw what the problem is. I'm just to isolated and not trying hard enough.
Its just amazing that everyone is gone from my life, all my riding Friends, work friends, social Friends. just incredible.
So I need to find interest in something and make new friends.
Thanks for listen ting.
Sincerely, dc