Dr. Who's On First
“Doctor. Doctor. Doctor. Doctor.” Anyone who has tried to get anything done after years of RA (or any other autoimmune illness) knows the doctor shuffle. Just like the video, many of us have five or more physicians to keep in the loop any time we need to get a medicine or surgery approved, and some even have enough to start their own Facebook group. What’s that like? I’m glad you asked.
RA is such an enigmatic illness, when you tell people you have it they are usually like:
“Hmmm, so do you take Viagra?”
“That’s ED brainiac….. also, do you have any Viagra?”
No one really understands the disease outside of those whose lives have been touched by it, and it’s not surprising – it’s complicated even for the people who actually suffer from it. There are symptoms from the illness itself, damage the symptoms cause over time, and, of course, comorbidities. That last thing, comorbidities, is the one that causes all the problems. I know, it sounds like a word that braggarts and know-it-alls use to describe two people dying but it actually means secondary conditions caused by an original illness. RA comes with a whole host of comorbidities – heart issues, lung fibrosis, hairy elbows, death, superdeath – RA is like Disney, if you can dream it, RA can do it.
Different specialists for different RA issues
You’d think that having these horrible side effects is enough of a pain, but with all these conditions come something else – doctors. That’s right, because everything in the medical field is so specialized these days, every time something else on you falls off or stops working, well, there’s a doctor for that. Four surgeons for your joints, three cardiologists for your heart, two nephrologists for your liver, and an ornithologist for your partridge in a pear tree. I’m not exaggerating, there have been times when I have had no less than eleven doctors caring for me. Yes, eleven – enough to form my own rocker doctor soccer team, of course called… The Mongooses (duh).
So, when it comes time to get anything done treatment-wise, it’s a Who’s On First routine just to get it approved. Dr. Who says you can’t take that RA medicine because it will interfere with your heart meds. Dr. What says he will take you off that RA medicine and put you on another. Dr. Idon’tknow says you can’t take the other RA medicine because it will make you too susceptible to infection and by the time Dr. Because weighs in, well, he just tells you you’re doomed. It’s Jenga, but much less fun. So… still Jenga.
Comorbidities and complications
Seem daunting? Well, you haven’t even heard the best (worst) part. Like Russian Nesting Dolls, comorbidities can cause secondary comorbidities. BOOM! Your head just exploded, didn’t it? It’s like the move Inception, we go so far down the rabbit hole that we aren’t even sure what’s real any more, and, of course, the co-comorbidities (or comorbidities2 if you prefer) each require another specialist doctor. Before you know it you’re collecting doctors like McDonalds Monopoly pieces, and whoever gets the endoscopic ultrasound doctor first wins (loses).
Some tips to coordinate care with the various doctors
So, how can you make it easier to keep track of the doctors before the music stops? Here are some tips I’ve learned over the years.
Open communication lines with your doctors
First and foremost, ask your doctors for their email addresses, and when I say email, I mean actual email. Most hospitals now are using some sort of website-based login and messaging system, and they are as good at sending email as Facebook is at preventing you from seeing ads for health supplements. I don’t want to drink my beets, Facebook, I don’t even like beets. If you get email addresses for all of your doctors not only can you send them emails as a group, but they can correspond with each other quickly and transparently. It’s a godsend when it comes to medication refills, let me tell you.
Get a copy of your medical records.
I know this sounds tedious and unnecessary, but here’s the truth of it: hospitals don’t share information. It’s the sad fact, and even in lifesaving cases many ED departments have to make educated guesses. If you go to see a new doctor bring the medical records with you, as well as the names, addresses, phone numbers, and email addresses of all your other doctors. I know you might have to back up a dump truck worth of paper to get them all, but that brings me to my next point. Nowadays, in the age of the PDF and the txt file, you can keep most of your pertinent medical info right on your phone! Yes, modern technology is good for something other than getting texts from your parents with inappropriate emojis. “Pick me up [Eggplant Emoji]” Mom… I don’t think eggplant means what you think it means. Yes, it will take some doing initially, but once it’s done you’ll be kicking yourself that you didn’t do it sooner.
Communicating only when necessary
Finally, make sure that you check with your docs only when it’s actually appropriate. You don’t need to contact your anesthesiologist to ask him if it’s ok to rub Ben Gay on your nether regions (but DEFINITELY don’t). Doctors are humans just like us (unconfirmed), and they don’t like being bothered with minutiae. If you constantly email them about nothing, then they won’t respond when your head suddenly falls off and you really need them. Use your head. Not literally.
So many doctors, so little time. RA, comorbidities and co-comorbidities make life with autoimmune disease a constant juggling act of doctors, and we didn’t even talk about co-co-comorbidities. Yikes. Just use your head and do the best you can to make sure all of your docs know about the important things going on in your disease, and sometimes your life. After all, docs are (probably) people too and they like hearing about some of the good things their expertise allows their patients to do. Within reason (I’m looking at you BenGay guy). Talk soon.
Right now, what RA tips would most be helpful for you?