It's Sunday, and I'm engaged in quiet rebellion. In lieu of Priests for Equality's The Inclusive Bible: The First Egalitarian Translation, I just read Wallace Steven's Sunday Morning. "Complacencies of the peignoir" and so on, an elegant paganism. Today, the poem, like coffee and oranges, is compensation enough for imagined losses; The general flight of generic birds provides enough permanence to sustain the necessary fiction.
Oops. Still there?
Typing is difficult. Using the shift key, inserting accented vowels, fending off cat paws -- all these things, though, force me to use my left hand, now ice cold, withered, and tad bit purplish. In this precise moment, I am having no spasm, anywhere. Were my head clear of fuzz, this instant could be categorized as phenomenal.
Since, however, my brain is encased in spidery filament, I will just do what I set out to do -- cobble together a few of the details that led to my recent downfall, in particular, the role of honesty and fear of litigation in the practice of medicine. Let's be very particular and insist on the specificity of January 31, 2012, the day before I ended up in ICU.
It wasn't the surgery that occupied me. It wasn't pain, even, or at least not my normal pain. It was all about those bleeping spasms, those crushing and twisting events that put my experience of CRPS on a new level of fear. Terror.
If you've been a Dear Reader for any length of time, you know that I'm defenseless against this permutation of CRPS. The only measure deemed effective against this dystonia/movement disorder involves the drug baclofen. People with CRPS and severe spasm usually cannot get sufficient amounts of baclofen without depressing respirations, etc., so the party line is that administration of baclofen via a catheter inserted into the spine is the best option. Large doses can be given without the accumulation of deadly side effects. Because I currently have infection assumed to be caused by implanted materials, and because my spine is riddled with microfractures due to osteonecrosis, the intrathecal approach isn't appropriate.
Which leaves me you know where and without a paddle.
I am a cash cow for Dr. PainManagement Dude. I haven't seen him in 2-3 years. Instead, I see one of his Nurse Practitioners or Physician Assistants for "pharmaceutical management." Most of that time, I saw A, a wonderful NP who was mostly up to date on trends within CRPS treatments and research. She pointed me in the direction of the sub-anesthetic ketamine experiment last year. She left right after that, and was replaced by M, who left, and was replaced by another NP whom I had only seen once.
Dr. PainManagement Dude --
Hi -- Hope you are well!
I had my left shoulder prosthesis removed and a temporary antibiotic-laced spacer put in -- last week, by Dr. ShoulderMan at The Lone Alp Hospital (in southern Tête de Hergé). This is a battle we've been waging, without much success, for three+ years now. I am getting awesome care by everyone -- your office, Dr. MDVIP Go-to-Guy, and, of course, Dr. ShoulderMan.
In the course of all this, however, CRPS kept getting worse. I think I have tried everything available in this area, and traveling just seems impossible now. There remains a chance that I will give it one more go, if this shoulder infection problem gets solved, with Dr. Scwartzman at Drexel, but it will be years from now, based on his schedule/demand. My hope has been that if the infection/inflammation could be "cured," then my pain levels would go down, not just in my arms, but overall. I still think that may happen.
It has taken me this long to understand how truly difficult CRPS is to treat. I am slow on the uptake!
These are the things I need to ask you about. Please excuse the more basic ones. I am avoiding the phone because the spasm/pain situation makes it a waste of time for retaining any information [also, I tend to scream without warning]:
Which PA/NP is treating me? I was so used to A, then adjusted to M, and now cannot remember whom I saw last, cannot find my paperwork. She was great, but who was she!? [I can see now that this reads as a criticism, but I swear, Dear Readers, that I simply needed a name.]
I need some flexibility in scheduling with your office. You all have been very accommodating, but I know a new "provider" may not be comfortable starting off that way. Fred is having to take me to Dr. InfectiousDiseaseDude's office 2-3 times a week for blood work and dressing changes, on top of regular "stuff," plus he administers the Vancomycin by PICC line. We're exhausted. Anything anyone can do to reduce stress will be appreciated. Every Monday and Thursday, we will have to be out and about until roughly 11 am, so is there someone we could see at your office between 12:45 and 2:00 pm? If not, we'll figure it out...
The medication situation: I have enough methadone (10 mg tablets, though, that I break in half) and endocet for about 3 weeks, enough amitriptyline for a few months, but whether I've enough baclofen is anyone's guess, as my need is rapidly changing. Dr. MDVIP Go-to-Guy has been prescribing it through my mail order pharmacy, Medco. I have had to take more endocet and baclofen than usual in the past two weeks but am planning to taper back over the coming week. [I am annoyingly honest with my health care providers. A few appreciate it; Most cringe.]
SPASMS: In CRPS, I don't know what doctors call them -- spasms, cramps, dystonia, WHATEVER! I cannot tolerate them at their current intensity and frequency. You probably hear this all the time, but I did not know it could get like this. This is a whole new animal... Right now, I am at my "calmest" point in a week, and the pain with each spasm -- now in my hands (they flinch, involuntarily[?], about every 20 seconds) -- shoots up to 8-9/10, then down to my usual 5-7/10. Both legs can be involved at the same time, to the extent that my foot is pulled toward my head, my hamstring is pulled in a different direction, and now even my left hip joint is involved. The last round of that began at 8 pm and did not decrease enough to make any difference until around 9 this morning. They spasmed throughout the day. I had what seems to me a lot of baclofen already, buteven that, obviously, did not work. I want to take as little as is necessary to relieve this horrid pain. I think I will need both a short term and a long term solution, unfortunately. Intrathecal baclofen is the usual long term approach but that probably isn't a good idea in someone already fighting an infection, plus... I just don't want it...
I am sure the correct response is to tell me to "come in to the office." I hope there is an alternative.
Thank you so much for "fielding" this email! I am trying to stay organized but it's hard. Please tell me what is not clear and I will try to answer more succinctly.
I did not receive a reply from Dr. PainManagement Dude. Instead, I got this:
I was the nurse practitioner you saw at your last visit. It was good to meet you!"Have a good week"!? If only one of us had known how the week/month was about to unfold...
Please discuss with Dr MDVIP Go-to-Guy the amount of baclofen you can take safely and what else can be done to treat the spasms.
We require everyone on narcotic pain medications to come visit monthly for medication refills, so please make an appointment before you run out of medication. I have asked B from our office to call you about an appointment.
Have A Good Week,
Proof of my capacity to "zip it," evidence of my claims of concision? Here's my response to ButterMouth:
It was good to meet you, too.
Thanks for your response.
To any medicos out there: Please allow your patients to be honest in their communications with you. Please don't see legal issues under every rock, something sinister behind every inquiry. Easy for me to say, I know, but then, whose blog is it, anyway?
When a person begs for help, please help.
February 1, 2012 proved to be a "Terrible, Horrible, No Good, Very Bad Day," in small part due to PainManagement Dude's studied non-responsiveness. Shoot, he probably could not have changed the outcome... but I might have felt less abandoned, safer, might have had a little hope.
What worries him so about having a medical opinion, a suggestion, a possible way to proceed? Did he fear that his response might be posted on my blog?