The pleasure of pain

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.

Audrey Hepburn wore flats, so they can’t be that bad

I’ve had some challenging days behind me now.

I began a new round of physical therapy focusing on proprioception and desensitization. My physiatrist wants me to focus on reducing the impact of the RSD and to stop falling. All great goals, but I can’t say that I’m too optimistic about them. You see, as part of my real 90 day challenge to myself, I wanted to explore how to deal with the long lasting impact of RSD on my own. Not to be in therapy anymore, but life took a different turn. The most challenging of it all was to hear the therapists impression of me. A very unrealistic expectation was that they would say everything is okay and I don’t need therapy anymore. No such luck. Not only did I hear promises of “we (I) can do better”, they took away another one of my great pleasures. Yes, it was time to address the shoes. Now, in all fairness, I hate my shoes now anyway. A collection of ballet flats, which are nice on low key days, but no fun when you have parties and work to go to. I was being good by wearing those. But, the ballet flats aren’t even good for me. Stability sneakers that is a fancy word for orthopedic looking shoes. These days, they have really nice ones. It wasn’t realistic of me to expect any different recommendation. $200, which blew my budget, for the shoes, orthotics, and socks to go with them. I could have a really bad ass pair of heels with that money. Plus, they made me recycle my toners. The toners are bad for me, but I spent $90 on those. So, total out of pocket cost was $300, not to mention what it cost my heart and soul.

To top it off, the PT discussed the use of a cane. My immediate, more guarded response, was no. I was thinking of the more appropriate “hell to the no”. I’d love to be the role model of someone who is handling the disorder, taking care of business. Instead I shot down the recommendation from any further discussion. The last time that I did this was when they recommended a lower spinal neurostimulator implant to help me out with my feet. I broke my foot the next day on travel with an unnecessary fall, in some cute strappy sandal wedges. I leave on holiday tomorrow for Disney, so, if history repeats itself, I could have a big fall coming to me with Mickey and Minnie.

To add insult to injury, on the same day, my neurostimulator wasn’t working properly. In the end, it was two dead cells suspected of causing the surges and shut offs from my device. By the time that I saw my device rep, my hands were shaking so badly that I couldn’t hold my device in place. I had to hold onto the walls to walk down the hallway. My original pain management specialist came into check on me. He wondered why I hadn’t seen a neurologist to check on all of these symptoms.

So, if we’re really looking closely, in this 90 day challenge, my goal was to move away from traditional medical treatment and closer to a less invasive Eastern Reiki treatment. I had hoped to document the impact of that. Instead, I have seen another orthopaedic (for my back), plastic surgeon (for breast reduction for my back), physiatrist, new round of physical therapists, three different device reps with two emergency reprogramming appointments, radiologist for a CT scan of my ankle, and a recommendation to only where stability shoes, walk with a cane and see a neurologist. I think that I have movement the opposite direction of my goal.

Here’s what I think that I might be missing. May be this is moving towards my goal. I wanted the rest of my life. May be this is it. Balancing my job, my family and now my evergrowing medical team. What is missing in that, for me, is my life. What happened to me? I’m getting lost in sea of treatment.

May be I’ll find it next week at Disneyworld. It’s the first time off in some time that doesn’t pertain to doctors. It’s just about me. It’s nice to remember me. I never thought that I’d say that it was my goal to be in those ugly ballet flats, but I do miss those. After all, Audrey Hepburn worn flats too, so they can’t be all that bad.

I’m still not using a cane!

Connecting with others

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.