When I first began writing Twenty Four At Heart post-car accident, I was in a very bad shape, both physically and emotionally. (Much worse than I ever wrote about.) I try not to think about that time period because it was a really, really, horrible time in my life.
People ask me for updates on my status often. I write about my progress, but I worry I'm boring you when I give updates. Lately, things have been changing at a rapid pace and, at times, it makes my head spin trying to keep up with it all.
As an aside: I wish I'd started in with a pain management doc years ago. If you ever find yourself dealing with a lot of pain for ANY reason, please realize what I did not – there's help out there. My doctors (well, some of them) were excellent at what they did, but pain management was not their expertise. I went through a lot more pain than I needed to go through.
Also, I have to say I cringe when people write and tell me I'm inspiring.
I'm not inspiring. I wish I could say I was, but I'm not.
I've cried, gotten angry, sworn at the world, indulged in pity parties, felt depressed, and asked "why me?" more than my fair share number of times. Folks, there's nothing inspiring about me. Nothing.
And now … now, I'm scared.
Logically, I know I shouldn't be.
And yet, ugh!
I met with my pain management doctor, Dr. Painless, again this last week. It looks like I will be moving forward on the path towards having electrodes implanted in my body to help manage my pain. Doing so involves two minor procedures/surgeries, and yet – my heart freezes at the thought.
I've had SIX surgeries already and all of them were a BIG.DEAL compared to what lies ahead. Implanting electrodes under the skin is minor stuff. Emotionally, however, there's something inside me that runs cold at the thought of walking into yet another surgery center.
I'm the one in control of this situation. Implanting electrodes in my body is not something I HAVE to do. It's something I'm choosing to pursue because I've lived with high levels of pain for over four years. Electrodes won't make my arm or shoulder work again, but they *might* make my pain decrease substantially.
There's also the possibility less pain will result, long term, in more function. It may not, but …?
I've had electrical stimulation at physical therapy. For a long time I even had a portable electrical stim unit strapped to my body and I walked around all day with it. (Of course, I made lots of jokes about my personal stimulator!) Electrical stimulation did help with my pain although it didn't completely eliminate it – and when the stim stopped, the pain came right back.
Boring 3 sentence explanation: Electrical stimulation works by interfering with the pain signal sent from the nerves to the brain. It kind of "scrambles the signal" by blocking the transmission of pain messages to your brain. Instead of pain, you feel a mild tingling sensation which TRUST ME is much easier to live with than pain.
These are the steps I will be moving through over the next several weeks once I return from my trip back east:
1. Consulting with a pain psychologist. He has to approve me as a good candidate before anything can move forward. (Meaning, he needs to believe I won't freak out at the idea of having something implanted in my body and start screaming Alien! Alien!.)
2. Meeting with Dr. Painless to discuss details.
3. Procedure #1 at the surgery center to put in temporary electrodes with an external charger. This is done to see whether the electrodes help my pain levels, are in the correct location, blah, blah, blah.
4. Removal of temporary electrodes about a week later. This isn't *supposed to be* a big deal. (but ouch?)
5. Another meeting with Dr. Painless to discuss results.
** If the electrodes don't help, or don't help very much, everything stops here. If they do help, I proceed to step #6. **
6. Procedure #2 at the surgery center to put permanent electrodes into my body along with a pacemaker-type device which acts as a battery/charger. This is a bigger procedure than putting in the temporary electrodes, but still not a major deal. I don't think. And yes, the device will be visible as a bump/bulge under my skin because there's not much fat to hide it under on my arm or shoulder. The electrodes/charging unit last about ten years before needing to be replaced/removed.
7. Follow-up visits with Dr. Painless.
At my visit with Dr. Painless this week there was a patient at his office saying good-bye to him. She had one of these devices implanted and it has helped so much she no longer needs to see Dr. Painless.
Can you imagine? Being pain free after years of being miserable? I try, but I can't even imagine ….
Electrodes don't work for everyone or for every type of pain. There's no way, at this point, to know if they'll work for me.
In the meantime, Dr. Painless is helping me in other ways. He's given me lidocaine patches which act like giant numbing band-aids I can wear on my arm and shoulder for 12 hours each day. They help a lot. How I wish I had been given the patches earlier for my worst days at physical therapy! It would have made such a difference.
He's also given me prescription anti-inflammatories, narcotic pain meds (which I've had ever since the accident, but hate taking), sleeping pills for the nights when the pain flares to brutal levels, topical medications to help with pain, etc., etc. He's got a giant bag of tricks.
I'm still in pain.
In fact, as I write this I'm in a lot of pain. (It is, I know, time for the pain meds I try so hard NOT to take. I suppose it's my own fault for being so stubborn?) The high pain level as I write this is, in large part, due to my daily swimming and the brace I'm now wearing several hours each day. And yet, both are important – vital really, so my arm and shoulder don't atrophy away to nothing and become even more painful.
So why do I have this gnawing fear of moving forward?
I know it's not logical. I don't HAVE to have the electrodes implanted. If the temporary electrodes don't work, the permanent ones won't be implanted. In fact, if I'm honest the electrodes having nothing to do with my fear. I know they have a good chance of helping me.
I want to be pain-free, or as close to it as I can get. I dream of holding a camera without gasping in pain. My arm may never function normally, but less pain could be life changing.
My fear stems from the thought of walking back into a surgery center. There are so many horrible memories which come rushing back at the very thought of it.. Overwhelming, pain-filled, memories of surgery, after surgery, after surgery ….
Logical or not, I'm scared.
© Twenty Four At Heart