I'm having a hard time, but happily so.
When I made my last round of the "specialists," I was a different animal. I told them, sometimes "in so many words," sometimes in clear, spelled-out nouns, verbs, and choice prepositions, to "man up." By chance, they are all men, and in my defense, I alternated 'man up" with "step up."
The medications that the Intimidated Ones prescribed were mostly the ones on the list I gave them.
Okay... no, I wasn't that harsh, and they weren't that resistant. And one of them, dear Bob the PA, came up with a winning drug on his own, though he did need the shake up of hearing me say "I'm done with your way of doing things."
And that's my message to anyone with intractable CRPS who has reached the point where suicide is not just one more option on a long list, but the most appealing and objectively effective option. You do, however, have to listen to my message before suicide is the only item on your list. So pay attention.
Get away from the CRPS message boards where there are one or two self-proclaimed experts and hundreds of following sheep. The science they skirt between vents is usually at least five years behind the times.
Forget the tens, the hundreds of screw-ups and insults you've endured at the hands and mouths of medical professionals who know next-to-nothing about CRPS.
Forget the mantras about the sympathetic nervous system run amok, forget the lame explanations of how "if feels like being doused with gasoline and set on fire" (unless, of course, you have lived through the experience of gas dousing and flame).
Read. Read the latest research. What you don't understand, reread, and look up what is obscure. Place confidence only in good research done at good scientific centers (sometimes, the fields are not medical, per se, but affiliated ones, medicine's building blocks). Often, all you will start with is an abstract -- if a paper seems to propose something you deem promising, buy it, or ask someone with library/subscription access to get it for you. Never forget to check at RSDSA.org, as they archive lots of the newest research and its available to everyone. Bless them.
My pain is not entirely due to CRPS, so I had perhaps more complicated things to research, though in the end, my attitude has become, "Screw it, if it might help with X, let's try it."
So if you have also reached the "screw it" phase, if suicide is rising to the top of your list, make a blitz run to all of your specialists. Insist on the appointments -- no whining -- just be really clear that it needs to happen now, And when you get there, cut to the chase. Again, no whining.
Say... This is where I am at. If you want to help me, then consider prescribing some of these meds that are having some success in off-label or experimental use. Don't defer, don't refer. Say no, or just do it. Thank you.
I'm on three new drugs and their side effects have me curled up most of the time. I expect to adjust. I also expect that I will suffer some of the more severe side effects they can cause -- from severe blood sugar changes to liver and kidney failure.
But you know what? When I wake up, I can straighten my legs without screaming. I am able to sleep on my side for the first time in over six years. I was able to walk 25 feet instead of my usual 10. There was a day when I did not know how to rate my pain on the goddamn pain scale because it was so low. I gave it a 4, after living at 8 and 9 for most of the last decade.
Suicide is still on my list. If these meds had not begun to make noticeable positive changes, I would already have killed myself. I am way past the "Do you have a plan, dear?" stage.
If it makes you feel any better, and sadly, it did make me feel a little more righteous, take the time to read this article by a doctor who became a CRPS patient. Think of the perks she had -- first, just by being a doctor; second, by being able to use her colleagues for favors; and third, by being able to jump to the head of the line...
And it still was far from easy for her, you still will recognize the disappointment, confusion, and frustration. Very little anger, though I expect she may have edited that out.
Available at RSDS.org, of course:
Improving the Diagnosis and Treatment of CRPS: Insights from a Clinical Immunologist’s Personal Experience with an Underrecognized Neuroinflammatory Disorder by Karen E Binkley
I am not counseling you to keep hope when all seems hopeless. I am counseling you to shake that staid orchard of trees, those stalwart doctors who have treated you for years, maintaining an untenable status quo -- and I am asking you to shake the hell out of them, and to use that fallen fruit.
If you are one of those remarkable people who live by faith, who find joy in simply being alive, you, of course, are not whom I am addressing. You, I hope, will just continue to have a darned good day. Excuse me, I am seeing double and a nap is calling my name, my siren name.
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| Graphic Credit: Neuroinflammation |
