RSD Interview #18 - With AJ

HOW AND WHEN DID YOU GET RSD?
Hi, Jane, Thanks for taking the time to do this with me: I was originally well. The diagnosis came fairly late; by my doctor, the neurologist, who treats this for me. I got worse with the treatments that are available in my area. It's a complex history. I had a TBI (Traumatic Brain Injury) in 1983 from a  domestic violence situation. I prefer, simply, to say TBI, as it is what it is.
I see the RSD confirmed that there is a lesion. Some patients with them are more likely to get this, I learned later. A more recent surgery (that was not quite optional) did not really succeed but, in some ways, I feel that the life changes that came later, I still wouldn't change much, I suppose.

DO YOU HAVE A GOOD SUPPORT SYSTEM?
I have a great support system. I had to be creative, but understand: friends can be your family.
Like the title: it can all change (I used to say) in a heartbeat. I like the title of your work: "In the Blink of an Eye", because things do change. Christmas was when I was saved.

HOW HAVE YOU RE-INVENTED YOURSELF?
I love being able to spend time on the phone. I am comfortable with that. I guess email was a nightmare: for a brief time. Clear boundaries helped resolve a lot of it. First with myself. Then others. But few really because, in myself, I let my fear get in the way of very effective treatment for it. And now I can sit still, and learning that the risk can be worth it.
How have I re-invented myself? In just about every way. My approach to managing pain? I am on basic levels there, but creative!. Headaches are prevented (literally), and some had me pretty sick for a good time. I got into habits like the warm, yet darkened rooms. I even use, for example, a colored bulb. I tailor my surroundings for me, and doing that feels great

WHAT THINGS DO YOU MISS THE MOST?
Walking was good-I miss the long walks I formerly was able to take.
My independence, definitely.
Being healthy.
Friends..

WHAT WOULD YOU LIKE TO SEE FROM THE PUBLIC?

-I often wish more people would understood that, when you lose a bit of ground, it can upset you (which is normal) AND, out of the blue, it doesn't take much to wear you out, physically and emotionally.

-I would love to see more knowledge of RSD and how it affects every body system. So many are classifying this as “chronic pain”. "I don't feel that it is STRICTLY a chronic pain disorder. I believe it is more than that (way more complex), and the series of outcomes for myself, even, speak the truth to people.
It is almost as if the attention paid/the focus is on pain, which narrows the scope as to what is treated.  Micromanagement in healthcare is hard to take for some.

-It has no cure, but that right there is no reason to lose hope. Yes, one can even turn out some positive things.

-That RSD is so different, in terms of pain.

-Education is encouraged. Don't be embarrassed to check and see what this is. Brochures are available through doctors and foundations.

-Making the same treatment available to others, for example:  an “RSD friend” who was also diagnosed with Fibromyalgia, can now get the medicine for which she, with RSD, was previously considered “not eligible”. That I find troublesome.

That well, for anyone, and many diseases: a friend diagnosed with another disorder...She may not have what I do but, each day, she understands me better. Talk about a blessing!

What I have learned:
Patience. I simply have to step back and give myself a break, at times. Doing so more often is a great idea.