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.