Posts tagged ‘spinal’

July 26, 2011

The pleasure of pain

by Living with RSD: what comes next?

I’ve had this neurostimulator implant for two and half years now. For those of you that don’t understand how they work, I’ll do my best to explain. I have RSD, which gives me wrenching pain in all four of my limbs. It also gives extreme temperature changes and swelling to the joints. I loose my perception of where my limb is in space, which matters more for your feet. It’s not constant, but I can’t control when it comes and goes. Stress makes it worse and exercise makes it better. The neurostimulator does not stop the disease. It blocks my perception of the pain, or stops the pain. My hands still turn blue and purple, but I can’t feel it as much. Every once and a while, I’ll turn off the neurostimulators to see if I still need them. Doesn’t take me too long to realize that the answer is yes. I couldn’t function without them.

This got me to thinking if only there was a device like this to stop the pain to you soul. You could just turn on a switch and let the pain happen around you. The pain happens, but you just don’t take it so much to heart. This got me to thinking even more. The reality is that we do have the power within yourself to slow down your perception of pain. Somehow, thinking of dealing with my struggles this way was helpful.

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May 14, 2011

Connecting with others

by Living with RSD: what comes next?

One of my therapists, Leta, gave me the name and number of client who also has a neurostimulator implanted. She was looking to connect with others who have implants. This was the first time that I have spoken to another implanted patient. Her implant is for a facial nerve. The leads are on her upper lip and above her brow. They connect behind her left ear with the wire connecting to the battery above her breast bone. She is having some troubles adjusting to the implant. She is four weeks after the surgery. We shared our stories and journeys that have lead to these decisions. I spoke to her for about 45 minutes. While I spoke to her, I felt good. I was finally doing something to acknowledge and accept what has happened to me. It felt a little less that something bad happened to me, but rather I was doing something about the bad thing that happened. I felt very positive.
After I got off of the phone, I cried for hours. It was a level of acceptance that I haven’t felt yet. I have spent the last few years in and out of doctors, but I haven’t really heard what they were trying to tell me. It’s been a long journey medically, but I haven’t started the journey to heal my soul. May be this is the first step.