Towards the end of last year, I realized that 2013 marked another anniversary for me: 10 years of pain. I knew I had hurt my knee for good in January, but I had to look up the exact date.
It was January 17, 2003.
Three years to the day before Jackson was born. Obviously, I couldn’t schedule a pain anniversary post for Jackson’s 7th birthday, so I looked up when I was actually diagnosed with RSD.*
On March 18, 2003, an orthopedic surgeon in Manchester, NH said that he thought I had RSD. However, he hoped that he was wrong, because “RSD isn’t really something you want.” I went home and searched for information about it. As soon as I read the description, I knew – I had RSD. Or, CRPS. Whatever.
I moved over all of the posts I wrote on LiveJournal about CRPS and pain. The most relevant ones are listed below. If you know me in real life, I’d actually kind of like you to read them. They sort of give some insight into why I’m me.
What does this anniversary mean, exactly? It means that I’ve been in pain every day for the last 10 years. For three years, that pain was excruciating. My knee was on fire. Someone was poking and jabbing it with a red hot fountain pen of precision, at completely random times, all day, all night. I basically slept because of drugs. And was I ever on drugs… But at the end of September 2005, I got into a drug trial and the pain started to get better. I had my first pain-free day on December 16, 2005.
After Jackson was born, I tended to take half of the then-new medication. I didn’t have pain-free days anymore, but the pain was tolerable. That’s mostly where I am now. Most days, I’m about 2-4 on a pain scale of 1-10, where 10 is “please just cut my leg off or kill me now.” And I’m not exagerrating. At least, not for me. I made my own pain scale and I deliver it to all of my new pain doctors when I first visit them. I also give them the 2 page spreadsheet of drugs I’ve been on and the 2 page pain timeline that notes milestones in my pain history.
I always thought I’d be at least in my 50’s before I complained about my aching fill in the blank. Instead, I was 27. While most days, I’m just fine, in comparison to the early days of CRPS, there are days when the pain is a 6, 7, 8 – and those are the days when I’m just a bitch to be around. So I try not to be around. Thanks to a big miscommunication between my doctor’s office and the only pharmacy in the US that ships my super-high-security medication, I was without that medication for more than a week. That was a very bad two weeks.
* You see, RSD, short for Reflex Sympathetic Dystrophy, is what Complex Regional Pain Syndrome (CRPS) was called before the medical community realized that the sympathetic nervous system isn’t always involved in RSD. So, in 1996, they split the diagnoses – If the sympathetic nervous system is involved, it’s RSD. If the sympathetic nervous system is not involved, it’s CRPS. How do they tell? Basically, if you have a nerve block (kind of like an epidural) and you’re still in pain, your sympathetic nervous system is not involved.