Rheumatoid Arthritis, Doctors, & the Portal
Doctors. When you have rheumatoid arthritis or, really, any chronic illness, doctors become a permanent part of your life – a phenomenon that happens with no other illness.
No other disease type requires such long-term care that your medical professionals basically become part of your family. Not as the wise dad or the nurturing mother, no.
More like that cousin who shows up randomly every Thanksgiving, uninvited, with a half-eaten box of 7-11 donuts for dessert. Half-eaten meaning all the donuts have bites taken out of them for "testing."
An assortment of doctors
Think about that for a second – chronic illness is the only type of illness that results in collecting doctors like baseball cards and you are never allowed to sell them.
Oh, you can trade them with your other chronically ill friends (no one recommends doctors to each other more than we do). But once you get a cardiologist, you’ve got a cardiologist for life.
They add up and, after a decade or so of chronic illness, you’ve collected a septet (that’s 7 for those non-SAT-vocabulary mavens out there), and now you have to engage in the Olympic sport of medical communications.
You need things from this gaggle of medical professionals that are vital to your continued existence on this planet, and therein lies the tragedy.
Medical communications and appointments
It’s funny - I try to explain to my non-chronically ill friends and family about the difficulties of trying to reach my doctors when I need them. They look at me like I’ve just told them that instead of changing my car’s oil I just, you know, buy a new car.
Now, out of polite deference, they don’t say anything. But if I were to interpret the looks on their faces as an actual sentence, it would be something like "Well why don’t you just call them and make an appointment?" Oh, were it just that simple, friends and family.
It's hard getting in touch with doctors
Of course, for anyone who doesn’t deal with rheumatoid arthritis and chronic illness, it is that simple. The once a year they need to go to the doctor to deal with an ear infection, they just call, and voila! Appointment made, medical issue solved!
So why wouldn’t they think I’m a lunatic for complaining about getting in touch with my doctors? Well, it’s pretty much like asking a firefighter what’s so hard about their job because you never had trouble blowing out the birthday candles on your cake.
Chronic illness requires regular upkeep
Getting your doctors to do the things you need them to do when you have a chronic illness is like trying to pull the teeth of the nicest crocodile on Earth.
You pull and pull and pull and they never get angry, but the whole time you are freakin’ terrified that they think you’re annoying and they might decide to eat you.
Chronic Illness and especially rheumatoid arthritis requires monthly and sometimes even weekly upkeep, and much of that involves communicating with – you guessed it – your doctors.
Now, this should be an easy task, and as long as the doctors respond in a timely fashion and do what you asked, then everyone gets what they need and Bob’s your uncle.
Unfortunately, as anyone with RA knows, doctors rarely respond in a timely fashion and seldom do what you ask. Even the best of the best.
Seeking a timely response related RA care
I experienced this myself, recently. A simple request for a blood test turned into a comedy of errors worthy of an academy award.
Now, if it was up to me, I would never get blood tests. I’ve had this illness for over 30 years and - unless I feel like something has gone awry - I can pretty much tell you that my bloodwork is going to be the same as it always is.
Doctors, though? They like to play a little game of hide-and-seek when it comes to your prescriptions. Namely, they hide them from you if you don’t seek blood tests when they tell you. So, I had no choice.
A worry of being too annoying
It’s a long and sordid tale. But to sum it up: I requested the tests the last time I went, and they told me they sent the request to the lab already.
Then, to confirm, I emailed the doctor, which is a Lovecraftian nightmare in and of it itself thanks to their new "easy-to-use" portal. The same company apparently provides all doctors with their "portals," which I now realize is shorthand for "portal to Hell." I digress.
I was told again via email that the lab had the request. I made an appointment with the lab and, when the day came, I braved a waiting room that looked like the set of The Walking Dead where they corral the extras. When I finally got into the testing room, lo and behold, the lab did not have the request.
I immediately left and called the doctors. In the back of my mind, the whole time, was a little voice that said, "Don’t be too annoying." Yeah. The doctor screwed up, twice, in fact, and I was still worried if I was too annoying, they’d cut me off. That’s the doctors when you have a chronic illness, and you have to deal with them for the rest of your life.
Dealing with doctors for the rest of our life
Permanent doctors. They should come up with a different name than "doctor" for our particular situation.
As of now, anyone who joins your personal orbit for life as soon as you meet them can be only one of three things – a spouse, a child, or a mechanic (you know how hard it is to find a good mechanic?).
Well, we need a fourth category now – lifelong doctors for anyone with chronic illness. Talk soon.
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