It’s been over three months since my last entry, and like every other time, I don’t know quite where to start. Being a published author and writer is great, but being a published writer with OCD AND a foggy mind due to a million medications running through my body for anxiety and pain is fairly difficult. I’ve spent years of my life trying to find just the right words when I am writing. I spend hours writing a paragraph because I don’t like how it sounds; I feel I can do better – find just the right words to reach perfection. I never do of course. It isn’t attainable. So, I put off writing because it becomes a whole endeavor that I, oftentimes, strip of its fun and catharsis. I go long intervals between writing when much has happened, so it becomes too overwhelming to recall every detail. That is why I’m finally promising myself to not let that happen anymore. I am going to make myself (maybe kicking and screaming) write at least once a week in this blog. I write not only because despite everything, it is my passion, but because I hope that somehow my words, my story, my struggles, and my resilience will help someone else. And if, some days, all I can do is complain and share how awful things are, I hope my words will bring comfort to someone else who feels alone in this journey of battling multiple invisible illnesses.
The Comings and Goings of the Last Three Months
So much has happened, and I’m sure you don’t want to read a novel, so I’ll try to keep this as short as I can (which face it, probably isn’t very short, if you know me), and build upon it and fill in the gaps it in the coming weeks.
A couple weeks after my “official diagnosis” of Complex Regional Pain Syndrome (CRPS), despite having it for the last year-and-a-half or so. I underwent the first of two lumbar sympathetic nerve blocks, which are generally the first course of treatment to if lasting relief is found by blocking the sympathetic nerves, and ultimately, help put you into remission. With my high anxiety, I was freaking out, seeing as I had to go to a surgery center, be in hospital attire, in a hospital bed, given oxygen, and have my vitals monitored. The doctor, his fellow, and nurses were all shocked at how much colder my affected foot was than the other. If I remember correctly, it was 78 degrees. So that wasn’t a great, hopeful feeling as that’s a tell-tale sign that the CRPS has progressed to the point where it’s harder to treat and achieve remission.
I have always had a high pain tolerance, which I suppose serves me well living with CRPS, but the procedure hurt. Lying on your stomach, having 6 – 7” sharp needles inserted past your tissues, fat, and blood vessels, until it reaches cluster of sympathetic nerves in your spine, and then having your nerves injected with anesthesia is rough. Oh yeah, and they do it on two different levels of the spine, so you get to have that done twice. I can’t quite describe the feeling of such intense pressure, but let’s just say it was not one of the most pleasant experiences I’ve been through. I pushed through it, and actually was told by the nurses and fellow that I was the “best patient they had seen all day.” Um, thanks?
My foot rose a few degrees after the block, which is positive, but I didn’t feel any less pain like they had promised I would. While waiting in the recovery room, others were exclaiming how they were in less pain, so the fact that I wasn’t, was pretty crummy feeling. I was hoping I’d feel the relief in the coming hours, but that night, I had the worst burning I had ever had, and for at least a week after the procedure could barely move because the referred pain in my back was so severe. There were days it hurt to even breathe. Supposedly, the doctor had hit a blood vessel, which may have been why it hurt so much. I can’t really tell you if it helped much. About a week later I left on a week cruise with my family, and I did do a lot of walking that I otherwise may not have been able to do, but overall the pain wasn’t much better.
The Second Nerve Block
The doctor assured me that the block had helped since I was able to walk more on the cruise, but I was still skeptical. I’m not a doctor, but I do know my own body. Too bad I don’t get paid the big bucks. Anyway, it’s standard to do a series of three blocks, so I ambivalently agreed to undergo a second nerve block in early July in hopes of finding lasting relief. This time around was so much more traumatic than the first one. I had to wait a long time waiting in the hospital bed before being brought back into the OR because the facility had not done as many of these procedures with my doctor, so they didn’t have the right needles, etc. It’s so reassuring to hear your doctor yelling at them inside the OR that they don’t have the right solution and needle length. (That’s sarcasm if you didn’t catch on). This time hurt so much worse than the first, and he hit at least two blood vessels, and had to keep repositioning the needle. All the while, I was tearing up because not only did I feel the blood squirting and running down my back, but I felt so damn helpless strapped to the bed on my stomach, and metaphorically strapped by this damn disease. When the procedure was complete, the radiologist told me that I was the best patient he’s seen. What is this theme? Haha. They had to lift me up and change my gown because blood had gotten all over it, and it’s not comforting when your doctor doesn’t have any bedside manner. But he’s the leading specialist for CRPS and there are so few doctors that know about, let alone will treat it, so you tell yourself knowledge and experience is worth no empathy. By the time I got wheeled into the recovery room, my whole leg was burning and hot (which, despite how uncomfortable it was, I had a glimmer of hope that it meant it worked). My back was hurting and the nurse told me to go home and ice it. Her comment made me more upset because icing is a big no-no with CRPS and can do a lot of harm. So, begrudgingly amongst the tears and pain, I had to educate her so she didn’t give these harmful instructions to someone else.
It’s hard to know I will have to educate so many in the medical field about my disease my whole life, so they don’t cause more harm.
As I mentioned in my last entry, any surgery or injury can spread your CRPS. Or it can just spread for no reason, as the disease is progressive. Something like 70% of people have it spread to multiple limbs, and many others have it progress into full body and into their internal organs. This is the absolute last thing I have wanted. It’s such a beast of a disease (the highest ranked on the McGill pain scale – over amputation, childbirth, nonterminal cancer, etc.), that to have it in one area was more than enough pain and suffering. Well, a few days after this nerve block, I started getting pain, burning, and a horrible electric-type feeling (there’s a name but I can’t think of it right now) in my other foot, both legs, under my butt, and both arms. My foot would suddenly get ice cold (as it often does), but now it felt like someone was stabbing me at the same time. I was in so much pain for a good week or two that I could not sit or function. All I could do was cry. Cry not only because of the unrelenting pain, but because that fear of it spreading had come to fruition and the level of hopelessness and depression I felt reached an all-time high. I got an emergency appointment with my doctor a few days later, but he was adamant that the block hadn’t caused the spread. I know from extensive knowledge and others who have received blocks, that it can indeed cause a spread. It wasn’t just a coincidence as much as the doctor wanted me to believe it was.
At this point, you’re probably bored of reading (or maybe you were bored after the first two paragraphs), so I will leave the rest for another day.
Stay strong, my fellow CRPS warriors. Keep moving forward, even if it’s slow. Keep hoping that someday soon there will be more awareness, more allocated funds for research, more treatment options, and ultimately, a cure for this awful rare disease.