April 14, 2012


When I checked in during January, I'd been put in a cast for a broken hand. Well, the cast came off, I went to Occupational Therapy, but instead of recovering properly, I was diagnosed with a rather rare malady called RSD, Reflex Sympathetic Dystrophy Syndrome, AKA Chronic Regional Pain Syndrome. Here's what that means: When injured, the sympathetic nervous system clicks on like an automatic light switch. Occasionally, when the injury involves an extremity like a hand or foot, it doesn't turn off. That's what they believe has happened to me. If you've got allergies you know that your body thinks it's fighting something dangerous, releases histamines, and you get allergy symptoms. RSD is kind of like that, only with the nervous system.

After diagnosing me, my hand doctor sent me off to a pain management doctor, who put me on Lyrica, which has an unfortunate side effect of causing some patients to lose vocabulary...not a great thing for a writer. She thinks it will abate, and I believe it is starting to do so. Forgetting the word "cord" or how to spell "who" scared the crap out of me last week.

The problem with RSD is that it's a race against the clock; you've got about six months to get it under control or it can get really bad...with symptoms jumping to the other hand, permanent changes in skin texture, my hand turning into a claw, and, quite frankly, a lifetime of pain.

My RSD was diagnosed fairly early, although I'm guessing the unforgettable pain I felt in my fingers while in the cast is when it began, which means the clock is really ticking now. So far I've had one stellate ganglion injection, and am going to have a second on Wednesday of next week.

The shots are administered while under heavy sedation. The needle goes in about two inches to the left of the voice box, and for most people, the doctor is led to the correct spot by first injecting iodine dye. Unfortunately, I am allergic to iodine dye, so apparently during the first shot she brought me out of sedation and asked me questions to help her administer the medicine in the right place.

I did not have the immediate, rock-star results some people experience. Whether that's because she didn't quite hit the sweet spot, I don't actually have RSD, or that it's going to take a lot of injections, I'm not quite sure. All I know is that my flare-ups are no longer three days. They last one day instead (I had one yesterday and I was a useless human being because I lost all ability to cope). I can bend my pinky all the way so that the it goes into the "fist" position. My ring finger no longer feels quite as much like a log as it did, and I can actually get a ring over my knuckle, which means the swelling that causes a lot of the pain has gone down. My pinky and ring finger don't shake quite as much. My joints don't seem to be turning blue and filling up with blood as much as they did either, another good sign, but I have a small niggle at the back of my mind: Am I the victim of wishful thinking?

With the exception of yesterday afternoon, I have not taken any of the hydrocodone prescribed because how can I tell if I'm getting better if pain meds are covering up the pain? My husband understands the logic, but both he and the doctor think I'm wrong to not take the medication. She assures me I won't end up like House, but I'm just not going to get back on them after taking so many between November and March.

If the shots appear to help at all, I'll have more, possibly up to six, and the doctor might actually go in and burn the nerve. I don't want that. As I told my mother, who is increasingly anxious on my behalf, so far the treatment is not as bad as it sounds. Yes, the prep for the shots is much like what happens before a general anesthetic, and there's no doubt if I didn't have that fucking iodine dye allergy (discovered in high school when they injected it via IV for a brain scan while looking for tumors to explain headaches) that I'd feel more confident in the efficacy of the shots, and the efficacy by degree as well: Are the shots working at all? Would they work better if she were visibly able to place them?

Meanwhile, all my editors--at PW & H&H--are very patient and understanding. A couple of days ago my first H&H blog entry in about seven months was published. It's called Kindle Magic (Or How to Organize Your Kindle Library. It's had about 700 views, not great, but not horrible either. It's amazing how easy it is to get used to low expectations.

I'm trying to get on with my life, whether or not this treatment succeeds. I'm forcing myself to use my hand and wrist as though the pain were not there because lack of use makes it worse. I'm typing. I'm carrying bags that aren't too heavy, although when I last did that on Thursday, my hand shook for a day. I put on earrings, bracelets, rings, and a necklace each day, even if I'm staying home, not only for the therapeutic value to my small motor skills, but also to remind myself of beauty. And I do my best to make sure my mother and daughter understand I'm not scared, so they can chill out until I tell them to worry.

That's all for now


David said...

Hi. My name is David Leitner. I have RSD and have been fighting it for over 10 years. I don't have any great advice, just don't stop fighting, keep on writing, and live life to the fullest. Like you said - get on with your life, no matter the outcome of your treatment. I wish you the best of luck and hope you succeed in overcoming this.

Anonymous said...

Oh Laurie. I was so sorry to read this blog entry and learn all that you've suffered recently. You're in my prayers. LynneW

Laurie Gold said...

David, thank you for your support. I hate to read about someone ten years in who is still "fighting." My hopes that these shots will put me into permanent remission are fast receding, but I've got things to do. I hope your RSD is manageable.

Lynne, as always, thank you for your support.