A Doctor's Point of View

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.

Graphic Credit: Neuroinflammation

suicide by doctors

okay, so in the few hours since i published this scintillating example of self-pity, guilt at having bad-mouthed the good people who are trying hard to help me, and who are as talented as they come, has gnawed a hole in my inflated psyche.  and i thought the pain of rotting bones and insane nerve fibers was hard to deal with -- well, that pain is nothing compared with guilt.

so... i'm sorry, okay?  it's just that every now and then i decompensate.

[which would be a reason but not an excuse.  jeez, but you people are rough on a girl.]

*****     *****     *****     *****     *****     *****     *****     *****     *****

i'm taking another mini-break from blogging, although experience tells me that merely making that announcement is a surefire way to recapture my own flagging interest.

the visit to the surgeon yesterday was good, in that i like him and he tends to get the various balls rolling. the visit was bad, in that so much remains... hors la portée. 

we cannot rule out infection of the left prosthesis but we now have another very evident reason for some of the pain and dysfunction, at least.  there is supposed to be a subacromial space in the shoulder, a gap in the joint, that is generally of around 9 or 10 cm. 

below 6 cm of space, it's considered a problem.

i am in the negative -- i have no space.  i have negative space.  were the prosthesis not there -- and there with such élan! for it is there, and jauntily! -- were that hunk o'metal absent, it'd be just another one of my collapsed joints.  i am too familiar with the concept of collapsed joints and rotting bones -- with all their translations into krapola and ouch -- thanks to years of avascular necrosis.  there is also the odd klunk of bones trying to settle into some acceptable version of order and boniness (that'd be the weird audio component of AVN:  the sound of joints settling.  disconcerting, this sound.)

the quote i love so much is burrowing through my very depressed mind.  next, then, the traditional moment with spinoza:

each thing, in so far as it is in itself, endeavors to persist in its own being.

i would rather hear and know this than all the promises of heaven and salvation.  sometimes, don't you just want the truth?  unvarnished, prickly?  capable of collapse, were it bones?

oh, hell, the important distinctions, the big ass caveat:  the endeavor is NOT what has been called the [evolutionary] struggle for existence, no way, jose!  it is simpler -- and harder -- than that:

it is the result of a thing being what it is

[from translator r.h.m. elwes' 1883 "introduction," to the ethics].

a translator who likes to nail things down, elwes also adds:

When it is spoken of in reference to the human mind only, it is equivalent to the will; in reference to the whole man, it may be called appetite.

there.  now spinoza and his scrappy translator grace the page.  i can relax. 

or i can persevere and persist in my (own) being.  how about it? wanna join me?

okay, so we have the squirrelly case of the disappearing rotator cuff muscles, which, being trapped between pitiful bones were nonetheless dispatched, disappeared, and definitively poofed away, away!

he gave me a cortisone injection, which helped for about an hour, thanks not to the steroids but to the hefty dose of anesthetic involved.  knowing how i feel about such injections, he gave rapid lip service to the benefit/risk ratio.  bless the man.  he may be the only one on the ball... and since he's the one with all the scalpels, that's a good thing.

no word had been passed to him by either my go-to-guy or the new infectious disease dood.  the three of them all chatted today, however, and i have been sending emails back and forth to go-to-guy.  new ID dood opines, as did the consult we got last august, that if there is a bacterial bad boy, he votes for propionibacterium acnes, based on the deep reasoning that -- now, follow along: 

since nothing has grown,

the culprit must be

difficult to grow,

and the most difficult bacterium to hatch,

 in terms of joint contaminants,

is p. acnes,

so it must be p. acnes

that is not growing.

sigh.

i feel like i am surrounded by idiots.

that is a dangerous thing to say, the kind of thing that can get a person condemned to hell, or that can at least give you a terrible reputation and keep you out of the country club.

so go-to-guy has come up with what feels novel to him [because he has completely forgotten about the lame ass consult of last summer, the one where fred and i traversed the wilds of tête de hergé (très décédé, d'ailleurs) aboard a convivial ruby, the honda crv, only to spend a total of 7 minutes with the illustrious doctor man.  illustrious doctor man hemmed and hawed (but not much -- i mean, it took all of 7 minutes... that's including the disrobing, the exam, the review of records, the documentation -- in fact, he had it all written up already, he had already concluded, the book was déjà closed.  "i took the liberty of speaking with your surgeon, who is known to me...."  sigh. dickwad.  and that was the genesis of the propionibacterium acnes element of our folklore.] --

whoa, nellie!  if i were you, gentle reader?  i would bale out of that paragraph!  [whether you are to BAIL or BALE out is but another conundrum] what a mess! 

anyway, back to go-to-guy, who is doing an admirable job of ignoring every reference i make to impending suicide.  he wants to do a course of doxycycline.  a course, that is, of ORAL doxycycline.  i think the poor boy is confusing a bad case of zits (a shout out to my former friends at PTZ!) with the lingering, well-hid pestilence known as osteomyelitis.  but whatever floats his boat and more power to him for deigning to do anything!  something, anything!  i came * this close to quizzing him about the types of barriers that would have to be traversed, etcetera but, thankfully, i managed to be a teeny bit decorous.

my crp is so high no one will tell me what it is.  that bugs the good bejesus out of me.  i can pass along all the other lab values... but the crp is gonna... what?  make me faint?

i am being referred to one of shoulder man's colleagues, the hipster, because my right hip is refractured.

the easiest solution of all, in terms of diagnostic testing, would be one fucker of an mri.  and that won't happen because of the incredible number of implants, screws, and such that cause the images to torque to high heaven.

shoulder man introduced the idea of a reverse shoulder replacement, a funky little design that is exactly what it sounds like:

it would be a last resort, this slicing off of the humeral head!  but his little blue shoulder man eyes, they were

a-gleamin'!  with the disappearing rotator cuff, the collapse of the joint, this is what remains as a surgical option.

of course, we must be reasonable.   especially since the foremost contraindication is the same as the foremost complication.   

why, yes!  that would be infection.  {as god falls into the groaning maw of his own smart-assedness.}

so this all has me beyond blue.  they want me to renew my relationship with the medical school rheumatology department, try the antibiotic (orally, orally!), and open my mind to a reverse replacement.

maybe i won't take a hiatus from blogging. 

i fear the implosion of everything, and sometimes it is only the writing that successfully squares off with the sucking abyss...

and tames my natural tendency toward dramatic excess -- rare though it may be.

jeez, louise, but i am tired.