Helping Others Is the Best Cure to Any of My Ailments
Written for the RSDSA blog by Elyssa Weiss.
My story is nothing short of a miracle, I do say that very humbly, please know. I have Grace I hardly deserve.
On Christmas Eve 2015 I fell asleep and somehow crushed my brachial plexus and then went into a coma. I was not under the influence of any alcohol or substances and I say this because it is hard to believe. I was also not heavy at this time. Evidently the crushing of my brachial plexus caused Rhabdomyolysis. I had liver, kidney, and heart failure. My brain swelled and I had double lung pneumonia. I also had three pressure blisters on my leg and feet that were 4 x 4 inches. 16 hours after I woke up from the coma, I had a heart attack. I was 42 years old.
This sounds awful, but I see it as the best thing that ever happened to me. I could not lift my left arm, nor turn over my hand for almost two years. The neurologist after the EMG told me I would never lift it again, but I can now! I am not sure if the original brachial plexus injury caused CRPS II or if it was the EMG. In addition, a wound doctor told me that I would need my feet amputated. After seven months of wound care, I still have my feet and just scars on my leg and both feet.
After my first occupational therapist gave up on me, I found a doctor who specializes in brachial plexus injuries. He said it was unethical not to continue occupational therapy. That therapist stretched my arm, did mirror exercises and everything in between with desensitization therapy and strength building. I owe her my use of my arm and prevention of getting a nerve graph or nerve replacement surgery.
I think almost a year, but not quite after the coma, I got the diagnosis of CRPS. I sought out many modalities of treatment. I tried Gabapentin, Lyrica, Cymbalta and some Doxepin and Nortriptyline over the years, but none of them worked. I also tried the spinal cord stimulator trial, but it did not seem to help me a lot. The doctor I went to at the time said if they put it in they would have to break some bones in my back to put it in permanently and he would not recommend it because this one was not MRI compatible. I now know there are many others out there that are.
I tried ketamine at the end of 2016. While I live in Georgia, there seemed to be a long waiting list, so I traveled back to where I was raised and saw Dr. Macler. Him, his wife and his staff saved my life! As side note, I inherited clinical, very bad depression from my mother who had electric shock treatments 11 years before I was born. I had been suicidal since age three. I had no idea that ketamine worked on this as well, as I was getting treated for pain. It did transform my perspective and therefore my life.
But ketamine alone was of course not the whole picture, as no one thing ever is. I have seen a pain management therapist in Georgia since 2016 and he taught me how to live! I learned many alternative ways to deal with pain and reduce stress, as of course this affects our Sympathetic nervous system. Deep breathing (how simple!) helps tremendously. I used to hold my breath all the time, but not anymore. I practiced meditation with the deep breathing and also did some Biofeedback, which made me very aware of when my stress increases. I feel more fortunate than others, as I twist every negative into a positive. I know within 10 seconds when a situation or something is stressing me; my arm turns up on the dial tone as I describe it. Most people get stressed and do not realize for hours or longer where they experience pain in their body, but I know immediately; how lucky am I.
Please do not get me wrong. I do have severe pain daily, along with a plethora of other conditions, especially throughout my entire GI tract, which stops me in my tracks. I am also fortunate to see a physician in Georgia who has worked with CRPS patients for over 37 years including his time in medical school. I did have an intrathecal pain pump implanted in 2017, but I just have Bupivacaine and Clonidine in there as I did not want a narcotic. I am not sure how much this helps really. They wanted to add Prialt, but I did not want to risk the side effects. I also have had Stellate ganglion nerve blocks, but I do not think they helped very much either.
I will not go into all of the details of where pain is in my body because it is not necessary. I learned, for me, pain never killed anyone, disease does. That is what I tell myself. I also believe mental pain can be much worse. I choose to not describe my pain as excruciating, although it may be, because if I change the words to describe my pain, my brain or my thoughts do not focus on it as much. The allodynia is awful, as sound and loud vibrations are not my friend. I do have mottling all over my arm and when I went to the Mayo Clinic in Jacksonville, Florida for GI and then pain, the five doctors stated if they saw me in an airport across from them they would know I had CRPS.
I have learned to laugh a lot and use distraction to deal with the pain. Mainly I know my purpose here is to get out of my own way, pay it forward, be loving and I do not judge anyone because I do not know what shoes they walked in. Helping others is the best cure to any of my ailments if I can balance that with self-care, which I struggle with. Sleep does not come easy and rarely occurs since the coma. This vicious cycle does increase pain, but if I do some of the alternative methods I mentioned above, I can rest.
This is just part of my story. I am grateful every day. I enjoy the in between moments. My tweaked perspective is nothing short of a miracle and therefore this was the best thing that ever happened to me. That is how I choose to look at it!
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