Note: This post contains spoilers about The Avengers (2012). Please be forewarned. Also, why haven’t you watched The Avengers (2012) yet? It’s fantastic and the sequel comes out in May. What are you waiting for?!
I see a lot of doctors.
I bet you do too, Chronic reader.
A good medical team is essential when you have a chronic illness. Chances are, you’re going to be spending a lot of time with these folks, so putting in the effort upfront to find doctors who 1) are knowledgeable about your illness, 2) have access to resources you wouldn’t have otherwise, and 3) are friendly, is really important.
That being said, it can be really difficult to find the good guys. Usually, the first few doctors you see are going to see closely resemble these guys:
That is, they are lacking heart, brains, and/or courage.
Run, run, run from these guys. It is not worth your time or your insurance deductible to work with a doctor who would like to “give it a shot” (<–actual quote from actual doctor who, surprise!, I did not see again). “Give it a shot” is what you say when someone invites you to play a game you aren’t familiar with, or when you’re asked to guess how many M&M’s are in a glass jar. It is not what you say to someone who has a medical condition that needs attention.
What is a Chronic to do? All these doctors, all these choices. What does a good medical team look like?
These guys =)
Captain America, the first Avenger, has one reason for doing all the wonderful world-saving work that he does—he doesn’t like bullies. Neither does my rheumatologist. The main bully he is concerned with is the immune system. In healthy bodies, the immune system is your best friend, your own inner superhero who fights off invaders. But what happens when that personal superhero goes rogue on you? Now your immune system is going haywire, not only attacking bad guys the way it should, but also good guys too.
Call in the Captain.
A rheumatologist can test you for immune dysfunction through blood tests, though sometimes that trickster will produce a negative result even if it is acting up. Your rheumatologist has to determine if your symptoms warrant treatment anyway, and what to do if that’s the case. Personally, my rheumatologist has 1) warned me about the negative long-term effects of my medications (see When your meds become your frenemies, June 20) 2) helped me to improve my sleep quality 3) drained a swollen finger joint 4) referred me to a dermatologist to make sure my Polymorphous Light Eruption wasn’t Lupus (see Don’t you want to buy me dinner first? June 18) and 5) run blood tests to show that while clearly my immune system is overzealous in its efforts, it has not yet reached Mega-Villain status. Plus, he happens to be very earnest and just wants to fight the good fight. Truly Captain America qualities.
Cue the Metallica soundtrack, the cardiologist has arrived. Most cardiologists have a tiny bit of a God-complex, a la Tony Stark. Don’t worry too much about this. I have yet to meet one without it, and I guess I understand- they do spend their days playing with human hearts. You know, keeping them beating and what-not. You can be brain-dead and still be alive, but you can’t be heart-dead and still be alive. So yeah, just ignore the complex. Occupational hazard.
My current cardiologist is pretty cool. Blunt and straight forward, this Iron-(wo)man is not going to go easy on me if I skip my cardio-workouts or “forget” to wear my compression stockings. As she is whip-smart and could probably build an Arc Reactor out of paperclips and chewing gum while sitting at her desk between patients, I trust her with my heart and all its functions. The fact that she works out of a big hospital center and has access to their resources (how very Iron-Man esque!) makes me feel like I’m not going to miss out on any new advances in research. She even has her very own Jarvis, a super knowledgeable cardiac nurse, who takes down all my information and vitals each appointment. Very cool!
I had to laugh the first time that I saw the Edward Norton version of The Incredible Hulk (2008) (the only version that counts, by the way, as we Marvel fans pretend the Eric Bana version (2003) didn’t really happen). According to this movie, Bruce Banner becomes the Incredible Hulk when his heart rate reaches the mind-boggling 200 bpm (beats per minute) mark. As a POTSie, I am familiar with this number, in that I have seen it more than once on my own heart rate monitor. POTSies have high heart rates (tachycardia), it’s just the way it is. For instance, my current resting heart rate is 95. Non-tachycardic people have a resting heart rate much closer to 70. Meds can only do so much, and may even have a reverse affect and make your heart rate too low, a situation called bradycardia (which happened to me, causing a non-epileptic seizure where I turned blue from lack of bloodflow/oxygen to my brain…very not good). Is there another way?
Yes. Enter the biofeedback specialist.
Calling her the Hulk is actually misleading, as really, I am the Hulk and she is my teacher to un-Hulk-ify me. But let’s go with it, as she happens to have a sweet, intelligent, Bruce Banner thing going on.
Hooked up to a monitor that tracks my heart rate, body temperature, and skin conductants (sweating), I am led through various guided mediations and breathing exercises by my biofeedback specialist, with the intention of calming down my nervous system. The 3 things I’m being monitored for are the most obvious ways to measure success of these super-relaxation techniques. Calming your heart rate has the added bonus of keeping your body from releasing adrenaline, which causes all sorts of Hulk problems. As long as I remember to use my tools, I can keep my personal Hulk-iness under control. Definitely a key member of my team!
Thor…General Practioner (GP)/Family Doctor
I promise that this has nothing to do with the fact that my GP happens to be of Norse-descent and has long, flowing blond hair that he routinely grows out and then shaves to donate to make wigs for kids with cancer. Thor is nothing without his hammer, and my GP is quite the wielder of his hammer of choice, his prescription pad. When I’ve got good old normal people heath problems (fever, runny nose, strep throat, etc.) GP is on the front lines to help me get back to fighting shape. Like Thor, he’s got his own team of Lady Sif (head receptionist-no one sees Thor, I mean, my GP, without getting through her first!) and the Warriors Three (two other office workers and a very efficient phlebotomist for blood workups), who never let him down. While not a chronic illness doctor, per se, having a trusted GP is very valuable.
<Also, funny story, he is also my mom’s GP-they met right after I was born when he heroically saved her from meningitis. She claims he looks the same as he did 25 years ago. It must be the hair…or that whole god of thunder thing>
Agents of S.H.I.E.L.D
Is it just me, or does Black Widow just not get her due? She is always right there, being the kick-ass assassin that she is, and no one gives her any credit. She doesn’t even get to be called an Avenger in the movie; rather she is an Agent of S.H.I.E.L.D. But don’t let the lack of official Avenger titledom deceive you. She, like my stealthy neighborhood pharmacist, is essential to the team.
A good pharmacist will search out tricky hidden threats like drug interactions and allergens hiding in the inactive ingredients. Like Black Widow, she shows them no mercy and immediately calls Cap, Iron Man, or Thor to arrange for an alternative. A super spy, she knows just which manufacturer I get my Midodrine from (there are multiple, and they all make them just the slightest bit differently in terms of inactive ingredients-weird) and somehow, they are always in stock. I elect her MVP of my chronic team.
Ok, so my mom is not a patch-eyed Samuel L. Jackson. But she commands a room like one! Nick Fury’s job is to keep all the Avengers on track. Mom keeps this train a-chugging. When I am unable to keep up with the wrangling of my medical team, it’s Nick Fury/Mom who steps up and takes charge. I know, I know, there are some of you out there who are going to take issue that my mom heads up my special operations-team. She would also probably rather play the part of Stan Lee, Marvel Comics Creator and seriously awesome older gentleman, who simply makes a special cameo appearance in each of Marvel’s movies (he’s the Easter Egg!). Yet, while I am more often than not my own advocate, sometimes I need help as I am just busy being…
Agent Coulson finds all the Avengers. He’s the cruise director under the guidance of Nick Fury. And in the end, he is the reason the Avengers finally get their act together and come together as one to save the world.
Stay with me here…
(SPOILER ALERT AHEAD)
In The Avengers, Loki is the bad guy:
My personal Loki is Chronic Illness.
At a pivotal moment in the Avengers movie, the heroes and Nick Fury, working together, have Loki under arrest in their floating space station in the sky. They think that they’ve got him under control.
Loki always finds a way to trick everybody. He’s sneaky and twisty and dark and malicious, kind of like Chronic Illness is. You think you have him tacked down, and just as suddenly, he’s out of your grip.
Agent Coulson brazenly tries to stand up to Loki, when Loki escapes and no one else is around to help. Coulson is not trained. He does not have endless resources like Iron Man, super serum like Captain America, Norse-god powers like Thor, or years of studious learning like Bruce Banner/Hulk. But he’s brave and he tries his best.
And then Loki defeats him.
All the Avengers rally together. They go out to defeat Loki, not just because in general, he’s the bad guy, but also because he’s taken out one of their own.
What they don’t know yet is that by the power of <greedy> screenwriters wanting to capitalize on movie success with a television show,
Agent Coulson lives. How he does it, no one knows (unless of course, you are Clearance Level 10). But he’s back and he never gives up fighting the bad guys, whatever form they take.
Kind of like me.
It might look like I’m defeated, but I’m not. Each time I get knocked out (or pass out, more like it!), I come back, a little bit better than before. I am still here, just like Agent Coulson.
So Assemble your own team of Avengers, Chronics, but never forget your own power.