HOW AND WHEN DID YOU GET RSD?
In 2009, I sprained my knee and it just never got better. I had been an avid hiker and backpacker and I'd had a few knee injuries before, so it was nothing new and I figured it would just get better. When it started to get worse is when I decided to see a doctor and, a few “second opinions” later, I got the RSD diagnosis.
IN WHAT WAYS HAS IT AFFECTED YOUR LIFE?
Life is pretty different now. I can no longer go hiking or backpacking, and I've had tremendous trouble finding work. I'm still unemployed but I'm working with the California Department of Rehab to help me out there. It's a constant dialogue with my body to know what my limits are, as far as physical activity. Thankfully, my RSD has not spread. It has stayed in my left leg but it's still pretty debilitating, at times. It presents a unique challenge as far as parenting goes, too. My daughter was born shortly after I got my diagnosis in 2009. So, in a weird way, it's fairly normal for us. I can still pick her up and carry her for short distances, but I do have trouble keeping up with her. Keeping up with a 3 year old is rather challenging, anyway, let alone with chronic pain.
DO YOU HAVE A GOOD SUPPORT SYSTEM?
Yes, my family's been great and really helped me out throughout the whole thing.
DOES FAITH PLAY A PART IN YOUR STRUGGLE OR YOUR STAMINA?
Absolutely. It's the strange relationship of faith both being tested and being the thing that gets you through. RSD isn't the kind of diagnosis that just debilitates you and it's done with. It wears you down over time, and can have some unpredictable ups and downs and flare ups. Even the good days are still rather strenuous on the body and the mind; it can really get your spirits down. That's where faith helps to get you through, finding the moments in life that are worth all the pain and immersing yourself in them as often as you can.
HOW HAVE YOU RE-INVENTED YOURSELF?
I've really only re-invented myself superficially. I went to St Jude's pain management program in Brea, CA. I worked with therapists there to mechanically reconstruct the way I do things, like getting out of bed and taking showers and things. That was a tremendous help. As far as re-inventing the inner-more parts of myself, I never gave it much thought. I suppose I have been changed by all I've been through, but there were never any conscious changes or strategic decisions as to how I was going to face things emotionally. I prefer to take it head on and react genuinely.
HAS ANYTHING GOOD COME FROM THIS TRIAL?
Simple answer: yes, but you have to work at it. RSD and other maladies don't really bring anything good to you. If you want to find something good, you have to work at it and make it happen. If you make a friend at the place you go to for physical therapy, you're the one who made that happen. I'm a musician and I've written songs about going through the ups and downs of RSD. I wouldn't say that RSD gave me inspiration but, rather, that I turned that story into something artistic.
WHAT THINGS DO YOU MISS THE MOST?
Hiking, Backpacking, Camping, going crazy at concerts (yes, I used to enjoy a good mosh pit every now and again). I can still go camping but not quite to the degree or intensity I used to. It would be nice to really go roughing it again!
WHAT DO YOU WANT THE GENERAL PUBLIC TO KNOW ABOUT YOU AND/OR YOUR DISEASE?
I'd really just like to see a bit more awareness about chronic pain in general, not just RSD. There are a lot of people living in constant pain, and there's only mild public awareness about it. You have to do a bit of research to find out anything about it. RSD has been around for quite a while. Yet, it's only recently that we've started to make breakthroughs and discoveries as to what makes it tick. And there's still a lot we don't understand. With RSD, there doesn't have to be a physical cause, like a pinched nerve you can point to and say "well, there's your problem". If you think about it like a computer, RSD is a problem with the software, not the hardware. Your nervous system doesn't know how to stop sending pain signals.
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