"This is too much pain; I can't take it any longer," I told the walls.
When ID Dood's PA arrived, the water works were still in full force. Sniff, cough, cackle, cackle.
Somehow, my body knew we were all at a crossroads.
*Nothing* helpful emerged from the ID meeting held last Wednesday night, not a single workable idea. As she circum-and-cross locuted all over the place, it became clear that there was an expectation that my orthopedic surgeon would continue to slice me open every other month, clear what infection he could expose, until death us do part.
Sniff, cough, cackle, cackle.
As she led me back to the Infusion Center area, she promised to call the ID Dood himself. Oh great exclamations of intense and joyful expectations. Oh! Oh!
I scared the bejesus out of the nurse drawing my labs and changing the PICC line dressing. He was afraid to touch me, even with my sniffed reassurances that most of the pain was coming from my left shoulder.
It doesn't make much sense, but the pain derived from touch (this involves CRPS/RSD) is completely manageable if that touch is firm and fairly constant. That can even be pleasant. (Get your mind out of the gutter.) It's when people think they are soothing you, with light strokes and gentle pats -- *those* ways of touching are murder, like fire, intolerable.
And that darned nurse forgets those little details from week to week.
gentle pat light stroke {murderous thought} gentle pat light stroke {murderous thought} gentle pat light stroke {murderous thought} gentle pat light stroke {murderous thought}
The nurse/pharmacist was behind him, giving me looks of encouragement.
Sniff, cough, cackle, cackle.About an hour later, the PA dropped back by to tell me that ID Dood has decided that I need "fresh eyes" to look at me from an ID-standpoint. She said the OS and ID Dood were going to put their fat heads together and come up with some referrals and they'd give me a call tomorrow (today). She made mention of a famous orthopod who specializes in the weirder instances of osteomyelitis.
When Fred and I toodled our way home, I wrote the experience up and emailed my dear Boutiqueur, my go-to-guy for things medical.
I took my breakthrough pain meds plus some ibuprofen.
This was The Boutiqueur's response:
La Bonne et Belle Bianca Castafiore,
It's very hard for me to "run the show" with all the specialists at Hospital X. I have talked with both ShoulderMan and ID Dood before and am happy to call them again. You need to understand it's a very difficult problem that we are dealing with and they have most likely never had such a puzzling and "resistant" case before. It's uncharted territory. If Dr. ShoulderMan will not go into the joint again surgically (which I would understand) and Dr. ID Dood feels like he's exhausted all the possible antibiotics, then where does that leave us? Another opinion is certainly an option but remember you have some limitations with which Ortho groups or hospital you can go to due to the previous legal issues. [Due to a previously described Sentinel Event... for which *I* am being blacklisted!] Dr. C. is very well known for his expertise in joint infections but he moved to California last year. One of the other options is going to one of the Speciality Hospitals in another part of the country for an expert opinion. MDVIP has relationships with many of these (i.e. Cleveland Clinic, Hopkins, Sloan Kettering, Mayo, etc). In NY,. there is the best Orthopedic Hospital in the country called the Hospital for Special Surgery. Through MDVIP we have easy access in making referrals and getting appointments with some of the best specialists in the country. I think you may need that. Your insurance would most likely cover the cost of the tests and visits and you would just have to pay your way to get there. Flights are fairly cheap these days but I'm not sure of the lodging. La Bonne et Belle Bianca Castafiore, I think you may be at the point that we have to consider something "drastic" like this. Let me know what you think as we'c be happy to initiate the referral and get the ball rolling for you. I'm sure Dr. ShoulderMan and Dr. ID Dood would be in favor of a move such as this. Let me know how you'd like to proceed.
-- The Go-To-Guy Boutiqueur
So it is today now.
How would I like to proceed?
In order to make such a determination, the kitchen floor requires the business end of a mop and the toilet boil wants a scrubbing. Two of four cats need an intense combing, one a serious brushing, and the remaining Little Boy? Never-ending sessions of love, daubing his wounds with gauze.
The clothes piled in the bathroom should be washed, dried, and folded before I can give proper consideration to Medical Tourism.
It was hard for me to trust the orthopedic surgeon who has been caring for me this past year. He has a reputation as one of the best -- but reputations mean diddly to me now. I am a product of the best schools and training, myself, and I know how little I know! The OS who managed to screw up my life back in 2002? The nurses liked to tell me, in response to my aired concerns: "But La Bonne et Belle Bianca Castafiore, he went to Hah-vahd!" My current OS? He proves himself by being himself, and he *is* the best. He is straightforward and reliable. He's talented and kind. He has a great staff.
It was hard for me to get to the point of trusting him. I don't want anyone else to operate on me -- he knows the terrain really well now.
The question is not whether or not I am being petulant and contradictory, but rather whether or not I am so petulant and contradictory as to be a real and present danger to the logic necessary to a good decision!
(If anyone out there has insights to share... please do, as I am fresh out.)
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