Finally met my Pain Doctor. After five years…
Where to begin! LOL
Had an … interesting… meeting with the head doc at the pain clinic.
He slotted 30 min for our meeting. He was ten minutes late and stayed 48 more.
He started off by harping on the narcotics and how it was “for your safety” yada yadda yada..
I explained it *wasn’t* about the drugs, it was about the *treatment*.
I really could care less *what* they use, I just want the pain dialed back to a liveable level.
I don’t expect to be pain free, but wanting to bash my head in with a brick is unacceptable.
I explained how I noticed that my NP had gone from being my advocate, to being my adversary.
I showed him that I keep a *meticulous* pain/life journal that is recorded by the *HOUR* that goes back YEARS. I follow *every recommendation/rule. I research my condition and *all* possible treatments. I read the med lit, trial info and results, the med journals and communicate with leaders in the field on occasion.
I explained that a year ago I was advancing well. I was actually being considered for a work position from home. Had completed certification and advanced certification scoring top of my class an in the top .1% nationally. *They* were coming to *me*. Again. FINALLY. Then I got sick and everything suddenly changed.
I explained that I understood the risks (prob better than most if not all of his other patients) and was willing, at this point, to accept *any* reasonable risk and sign a waiver to that effect. I offered to give him *any* protections he desired in order to protect himself and the work of the clinic (because they *have* been a decent clinic.) I offered to take any test, see any doctor (other than an ass of a pulmonologist who thinks I was just being “melodramatic” about my pain and claustrophobia.)
I said I even went and paid out of pocket to see a specialist in *HIS* med group. Said to ask *that* doc *point blank* about narco use. (The NP sent a *very* specific question only about a pain pump.) Showed him that I owned a (now slightly worn from use!) pulse ox meter and *proved* to him that it was *as* accurate as the one they use. (Wore them side by side.)
Explained that I didn’t *have* to wear it. *Proved* it by taking off my O2 and maintaining a 94% saturation rate in front of him. For an HOUR. (I wear it because I have polycythemia- a low O2 condition symptom. We don’t know if it caused the enlarged heart or vice-versa.) I wear it to fight *that* condition because we don’t know where it came from. I wear it at high levels because we pay for a blanket amount. (As much or as little as we want- same fee.) I figure the “more the merrier” so….
Explained that the pulmonologist had asked me to do the equivelant of jumping 20 feet as part of my treatment. I could not *physically* comply. That I had taken *any and every* possible option otherwise to make *sure* I covered the problem six ways from Sunday. (And that I had the data and recordings to *prove* so.) That I had showed the new lung doc and he had *agreed*. But that my NP didn’t seem to want to know *or* care!
I told him I was *very* concerned and a little angry that I called his office 8 times over 5 days because I couldn’t take my *other* meds since I couldn’t keep down sips of *water*. That I pretty much stopped eating on the 11th Sept. Anything I *did* eat I lost shortly thereafter.(I lost 25 odd pounds by the way, wouldn’t recommend it as a diet…) And I received…… Nothing. No call backs. Nothing. That his clinic was a black hole. I even sent a letter cert. mail and got back…. Nothing. But a letter saying they would discuss it in two weeks at the appt. That I warned them the agony was so bad I was considering drastic action. Like an ambulance. Again….. Nothing…
He asid he would check the records. I gave him a few times and dates. To *Help*, of course. 😉
He started with the whole “You say, the NP says..” when I held up my hand to stop him and told him, point blank, that I had started recording my meetings with the NP in FEB. (And would he like to hear them.)
THAT got his *undivided* attention. He said it was illegal, I said, “No, it is inadmissible in *criminal* court.”
He asked if I was recording him right then, I told him of course not!
But by doing so I put him notice that I was *not* a ‘run-of-the-mill’ patient. I *knew* my rights, *his* responsibilities and, more importantly, *LIABILITIES*.
(I had already informed the chairman of the board of the clinics overseeing med group that they were on notice…)
From that point the dynamic changed.
And, Oh! He cannot *guarantee* use of morphine, but *is* willing to take a fresh run at a new pulmonologist (the Cool one I have already seen, btw. Friends with my *cool* primary care provider! LOL).
Said they would schedule fresh sleep studies and if *they* can give him the *cover* he needs, then *nothing* would be taken off the table and we would talk again in a month.