As most of my long term readers know, in June 2017, something happened to me. Something that changed my life permanently. My father was in the hospital. He has an artificial heart valve and his doctor had missed the signs that it was failing. Every day for a week, I went up to his hospital room and listened to the doctors explain why he wasn’t going to live. The good news is he didn’t die, which was a miracle in itself.
For four days, he was hooked to an epinephrine drip and that epinephrine was the only thing that was keeping him alive, which was a problem, because he needed to have the valve replaced. But they couldn’t do the heart surgery with him on epinephrine. In order to do the surgery, his blood pressure and heart beat would have to normalize on their own. To everyone’s amazement, once the situation was explained to my father on day four, he miraculously started to improve and by that night, he was off the epinephrine and I was home feeling like a terrible human being, because I had woken up on the morning of day four feeling like someone had taken a hammer to my right hip. I had very, very mild arthritis in it, so mild that not all radiologists even agreed that I have arthritis in it.
So as my father recovered, got his replacement valve, and got better my battle began. The date my hip began to hurt was June 14, 2017. It was a Wednesday night. When it first started, it was an achy pain that I couldn’t pinpoint a location on. I just knew it hurt and the more I used it, the more it hurt. I finally broke down and went to the ER on Sunday. Where I was told the swelling and pain in my hip were being caused by a urinary tract infection. One week later, I was back at the same ER with another symptom. I had a cold sensation in my leg that I couldn’t get rid of. It followed along my sciatic nerve and I was diagnosed with sciatica and sent home with exercises and told to see a chiropractor.
In September of 2017, I had been going to the chiropractor for 2 months, it wasn’t helping decrease my hip pain. My urinary tract infection was gone. I still had swelling in my right hip and right thigh. The sciatic exercises didn’t do anything for the pain. My pain management doctor decided that the cold sensation was nerve pain and we would just do an ablation because doing a steroid injection directly into the joint, had helped a tiny bit for a whole three days before it felt like a car had rammed my hip. I went into nerve ablation blind. I thought it would clear up my pain. I had learned that nerve pain is normally hot, a burning sensation, but some people have cold nerve pain, like someone has injected liquid nitrogen into the nerve bundle. I had this type of nerve pain… I had it in my hands, my forearms, my lower legs, and now my thigh, buttock, and hip.
Nerve ablation did not help my pain. It made it significantly worse, which I honestly hadn’t thought was possible. The pain also changed a bit. I began to wake up every morning feeling like I had broken my hip in my sleep. My pain management doctor told me I had something systemically wrong with my central nervous system. My first thought was fibromyalgia. My mom has fibro, so that made sense. My pain management doctor told me my pain was too extreme for fibromyalgia and that while everyone’s suffering is a bit different, he didn’t think that would account for the sensation that my hip and spine had both been broken. I was sent for testing… I expected the rheumatologist to sit down and start explaining lupus or MS to me. Imagine my surprise when she sat down and told me it was Complex Regional Pain Syndrome, a disease of the nerves caused by an injury that may not have been all that severe at the time.
As I started reading up on CRPS, I found something terrifying that I was familiar with: Reflex Sympathetic Disorder (RSD). In my teens, when my hand had first started to hurt, a doctor had told me he suspected the pain might be related to RSD and then nothing happened for 22 years. Oddly no fewer than five doctors thought I might have RSD, but not one of them took steps to help me with it, because it was just a suspicion and RSD is rare. So, 22 years after I first experienced a pain that made my hand feel like it had been crushed, I was dealing with the same pain in both arms, both hands, my lower legs, and my right hip.
It is very hard to explain Complex Regional Pain Syndrome. It’s a faulty mechanism that no one understands, your nerves become convinced they are still injured, even if they weren’t injured in the original injury, so they become hyperactive and overload the body with pain signals. Each new injury runs the risk of spreading CRPS to other parts of the body. For example, in my early 20s, I slipped on some ice and did major damage to my shoulder. I had to have surgery to repair it. It never healed properly. My shoulder can slip in and out of socket quite painfully with certain movements. It can also become quite painful for no reason other than it’s a Monday at 3 pm. My surgeon sent me to a neurologist for the slow and failed healing process because he suspected I had CRPS.
It is called the Suicide Disease because over 90% of all CRPS patients commit suicide. On the McGill Pain Scale the only thing listed as being more painful than CRPS is terminal cancer… and suicide rates for terminal cancer patients has reached 98%. Also there is no effective treatment for CRPS. ketamine is used when surgery cannot be avoided because ketamine has shown to limit the spread of it in surgical settings. Also, ketamine treatments, where you go to a ketamine clinic for multiple hours a day and get hooked to a ketamine drip, has given hope to some. For a select few, ketamine does help and their pain may become tolerable for as long as six months with a ketamine treatment. However, ketamine treatments aren’t for everyone. The steroid injections and nerve blocks don’t always work for it and just like it has done with me three times now, it can temporarily make it much worse.
I consider Demonic Dreams a miracle book because I wasn’t sure I would get it written, ever. My pain has gone from feeling like a broken hip to feeling like it has been crushed inside my skin. Also, my leg feels frozen all the time. It feels like someone injected liquid nitrogen into the nerves of my upper and lower leg on the right side and let it set up. It is also difficult to talk about my pain because I have had people tell me to stop being melodramatic, tell me it can’t be that bad, and tell me that it isn’t like I have a real disease. It becomes very damaging to the psyche to hear that. Especially since I have now met about 60 people who also have CRPS and they hear those things too.
To write Demonic Dreams, I had to find a sweet spot on pain levels. I found it impossible to write when it was too high and I haven’t been pain free since June, not even for a few minutes. I had to defeat the demons in my own head as well. I battle anxiety anyway, adding a touch of despair, hopelessness, and the brutal reality that just treating me to the point that I was comfortable enough in my own skin to not want to kill myself is a challenge.
Now to get The Dysfunctional Mob and Ritual Dreams written.