[CZZ74]

I had a 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

[keep smilin]

Originally Posted by CZZ74

I had a 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

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

[dreambeliever128]

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.

My Dr. got me involved in it to get me out of the house. He didn't want me to stay so isolated and wanted to get my mind off of my pain sometimes. I'm making new friends too.

I know what you mean about your sister. My sister calls me about every other day from Ky. She says I'm her entertainment on the way home from work. She's kept me going for the past years by doing that. Her mood is always upbeat and we laugh a lot. We need that.

I hope you do find something to help get you out of the house and give you something to look forward to.

Isolation comes with RSD that's for sure. The pain keeps us from being able to visit with people most of the time.
Ada

[loretta]

Originally Posted by CZZ74

I had a 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

Hi dc, Thank you for sharing your feelings from the heart. I can so relate, as I struggle with withdrawal and fight it every day. It's healthy, if it's limited and we use the time to meditate and figure things out in the still of our mind.
I'm sorry your husband left and so many friends. You can and will make new friends. I like the volunteer thought, so many good people use and truly appreciate the help and friendship.......
Do you have a Y pool with temp at 86 degrees. I've really benefited from group water exercise- stretching etc. It's kept me mobile and even turned my toes back to touching the floor again.
Visiting hospitals, children's hospitals can give us a connection with other people and a spirit of helping others. I know you will find your way. Do you have a local support group or could you start one? RSDSA has a list of groups, just put in your zip code.
Keep in touch and let us know how you are. I am 61, live in Arizona, have full body RSD and internal now. I had a total meltdown at a new Dr. gyn a couple days ago. It was my first visit and she was so kind and wanted to know everything. Such a caring Dr. She is going to do research and talk to compounding pharmacist and make up a compound to try and help with the burning in pelvic region. Sometimes, we just don't realize how much we hold in till the flood gates open up. It's been 15 years now and living in AZ 12 years. So grateful our lifelong friends from Oregon still come every year to visit. They love to cook, so I don't have to worry about any of that. Our dear daughter and son in law are helpful and caring. I know it's very hard on our daughter. We only have the one child-30 yrs old- and we played tennis 5 times a week, guess you could call us fanatics. water skied, snow skied, traveled, horseback, I got this when she was 15 following breast surgery. Wasn't diagnosed for 4 years. But Dr. got me into therapy because of frozen shoulder and then remission for at least a year, then frozen shoulder in other shoulder, therapy, then another remission. I'm so grateful for the remissions. Her wedding was during one of the remissions.
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

[Lisa in Ohio]

Hello DC, I so understand the isolation that comes from this monster that lives within us. I have found an outlet in taking classes at a local college. This was suggested to me by a kind, caring surgeon when he could no longer help me. It forces me to get up everyday and to go somewhere with people. The homework fills the time after classes, as I have to work extra hard because of the memory problems. I have met so many interesting people and really enjoy the younger students. This is just a suggestion and I hope you find something to fill the empty spaces soon. Lisa

[Skooz]

Originally Posted by CZZ74

I had a 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

Dear DC,

I understand everything you are saying and believe that only those of us with RSD can fully grasp our losses. I am blessed to have the most incredible who, at the point in my illness when I was going to lose my career of 28 years to disability, gave me insight that continues to help me six years later. I share it in the hopes it will help you. He said, "Having RSD is to have a series of losses. Each of which will cause you grief, not unlike a death. The loss of your friends, the loss of your job, the loss of your music (I had been also a professional musician). You must be prepared and allow yourself to grieve each loss and then use your faith to sustain yourself".

That insight has helped me understand how I experience these awful losses, as a wife, mother, career woman, and musician. What I have done to try to replace them is to adopt an attitude that I express out loud, that I must make some good each and every day from this new life that God has given me. I am very limited, unable to do the things others below suggest such as volunteer or visit the pool. So here's what I have done to create a life without isolation, because like you, I lost my social structure (which was surrounded around my work) and have lost my family interaction (because I can no longer drive to visit them).

Every day, unless my pain is a Level 10, I force myself to leave the house and get coffee at a neighborhood place and visit our neighborhood grocery. I call it the "fake", dressing in a cute, RSD-friendly outfit, always with make-up on, to mask my illness. Through this one daily act, I have made a new support structure, friends from all walks of life. I have a few minutes when someone might even say, "Gee, you don't even look sick!" and boost my spirits. But most important, I have the most unexpected network of uplifting people who care about me and I about them.

I joined a church choir. My illness makes it difficult for me to sing many Sundays, but I am a loyal participant at rehearsals, propped up by pain meds. I have a new network of caring believers, who truly care. We share each other's joys and sorrows, and in learning the sorrows of others, I realize that others need my support, too. The music distracts my mind from my pain, even when I am unable to stand. Our local university did the first research proving the correlation between singing in a chorus and the increase in ones mood and happiness.

I send cards, letters, and small, unexpected gifts. Somehow, I do not feel as isolated when I am reaching out to others. An email is not the same as receiving a letter that says "I'm special". I remember the elderly, a special teacher of my children, relatives, those who may not receive much mail. I have often thought that we should set up a way for RSD comrades like you and me to exchange addresses so we could support each other.

RSD makes us miss out on so much of life, each and every day. RSD has taken our former lives from us. I hope that my experiences may help you, DC. We all can support each other to not feel so isolated.

If there is a way for you to give me your address, please do so, and I would love to adopt you so you will know that there are others who care about you.

[daniella]

I can very much relate to this. I live alone, don't work due to the RSD, and have very little people near. I really need to force myself on better days to do more socially or a hobby. It is hard to know what the day will bring pain wise and that is the hard part of a scheduled something. I guess for me I am trying to identify some barriers and ways to work around that. So maybe if you can indentify some too it can help you find ways to find something you enjoy. I can really relate to the loss of people and i am sorry you have faced that too. It makes it hard to trust people. Anyhow keep us updated

[Kakimbo]

THANK YOU EVERYONE!

This is such a wonderful thread. I really needed this insight. Can we all be old-fashioned pen pals?

Kim

[keep smilin]

Originally Posted by kim ames

THANK YOU EVERYONE!

This is such a wonderful thread. I really needed this insight. Can we all be old-fashioned pen pals?

Kim

Ya Kim..I will.. I will .. take me!!

Kathy

[Lisa in Ohio]

Me To! Lisa