To an old HVAC engineer ACR means something entirely different – but here it means American College of Rheumatology.
The good: I got to meet a bunch of herself’s web buddies. Mostly beautiful women. A couple of guys, but mostly, I remember the women. The thing that so many people don’t seem to do is to look into rather than just at. Now, the at was pretty damn good. Mostly the gals you read on the RA Warrior blog are just lovely. But the into. Wow. Incandescently gorgeous. What most don’t seem to realize is the amount of strength and guts it takes for these people to just get out of bed and put one foot in front of the other every day. So, not only are these gals babes, not only are they intelligent and funny, but they are some of the most courageous people you will ever meet. (Guys too, just not my cup.)
The bad. Deep sigh. You would think that at an ACR conference there would be very little ignorance about RA. Deeper sigh. There is. Lots. Let us firstly understand that the way these beautiful, gutsy people made it here and put on a smiling face and functioned is – tada: THEY WERE DOPED TO THE GILLS. Most of them were on some sort of Prednisone taper, and even so, paid one hell of a price in pain every day. But – there were even doctors who seemed to be totally ignorant of the reality of RA. One guy even mashed hands and fingers without permission and stated, “You couldn’t have RA – your hands are not bad enough.” Jackass. I say that advisedly. I can see a layman with that level of ignorance. BUT A RHEUMATOLOGIST!!?? That’s really a bad.
The ugly. Well. I only heard one set of the speeches, the set that Herself was in (no surprise). One of the speakers positively chirped in a totally cheerful way about the strong need for diet and exercise. Also did not seem to draw any lines between RA and OA. …Gotta change that name. OK. A little common sense here. Speaker – let me see you get up and do a brisk two-mile walk when there are knives in your feet. Oh, swimming??? Good idea!! Wonderful exercise. First – let’s find a local pool that is not too cold for use with RA. Most pools are swimming pools – temp somewhere at 85⁰F OR LESS. What the RA Warrior needs is at least 88⁰F, preferably 92⁰F. There is no way an athletic swimmer can tolerate that range. There is no way an RA Warrior can handle less than 88⁰F. Looks like exercise might be a little tough for the RA people. My observation: every time useful exercise is attempted it takes three days to recover. This is known as a net loss. OK – diet. Easy enough. Just – oh, wait a minute, is this the one or two days a week that methotrexate DOESN’T have the guts totally torn up? Lemme tell you sumtin. As the caretaker and cook, I will fix whatever Herself can get down and keep down most of the time. And that is a bloody moving target. It can change half an hour before dinner. Now – I may have a real bad attitude, but on the days when something CAN be eaten I’m going to cook what is a treat and tastes good. And the food Nazis can go to hell. You know the medical diet? If it tastes good – spit it out. Nope. Mostly I cook what will stay down, and the mayor of New York can go to hell on the days when good food can be used. What is really ugly is that was a real RA pro.
Conclusion: It was good, mostly. But I despair of the state of things when that level of ignorance was the best we’ve got. Kelly, babe, keep on educating as hard as you can. It is needed.
Lest I forget – I did meet a whole bunch of really good docs. I don’t want to leave the impression that there are not some really top notch people involved in RA. There are. Doctors and researchers and so forth, oh my. I suppose the majority of the people there were (are) actively as involved as they can be in trying to fight this horror. God, please bless the good ones.