I was supposed to have a procedure done on a skin cancer on my ear today, but that’s not happening. Because….sigh.
A little background. While CF is becoming less of a “childhood” disease and more of an “adult” diseases, adult hospitals have not caught up. I’ve been in several, and what I’ve noticed at 98% of them is that the doctors and staff cannot look at someone “young-ish” and see chronic disease. They think that anyone under 50 must have been perfectly healthy her entire life and thus, can just do whatever they want.
A few examples:
You can’t do an MRI on me. Magnet in my head.
You can try to put in a PICC line, but it won’t work. My veins are all scarred over from the years of previous PICC lines.
You can’t use adult sized needles on me; my veins can’t take them. You need baby sized needles, small child sized needles. I have small child sized veins. And you also have to be good—you can’t just look in the crook of my arm or my hand like you could with a regular adult. I’ve had IVs in my shoulder. I’ve had them in my thumb.
And, what’s pertinent to today’s discussion: I am on many* meds for a variety of conditions. You can’t just prescribe a drug for me without looking at side effects and being aware that they might happen.
This is relevant because, as I wrote in the previous post, when you already have mental health issues, you tend to not like drugs that can make those worse.
So, when I (my mom) called the doctor about the side effects I was having—supreme irritability, mood swings, etc.—the nurse said, well, stop the med and I’ll talk to the doctor.
We (mom and I) get a call a few hours later when we’re at dinner. The nurse says that 1) the doctor doesn’t think the med is causing the issues, but stop anyway 2) they cancelled my appointment for today and 3) they want me to go to my “PCP” (primary care physician) to have my “mental stability” assessed.
That last point is sort of an insult, frankly.
I’ve been seeing a psychologist since I was 16. I’ve been on a medication for anxiety for that long. My doctors KNOWS this. It’s in my freaking chart, that I take this med. I am not unstable, but yeah, the med you put me on? Made me a littleeeeeee irritable and sort of unhinged. Yeah. But that doesn’t mean I’m going to flip over procedure trays and get into WWE fights in the waiting room. Stop the med and I’ll be fine.
It’s like when I do a steroid bolus. It makes me SUPREMELY cranky and irritable. But I know it’s the meds and the courses are usually short. In this case, the med isn’t even necessary, there are other ways to treat this guy. I’ve had lots and lots and lots of terrible medications in my life that have given awful side effects, but they’re necessary so I suck it up and deal with it. This isn’t necessary.
Second, I don’t have a GP/PCP. I TERRIFY GPs, because I’m complicated. The ones I’ve met are usually afraid to do anything to me because they don’t want to mess things up. So my “GP” is my transplant pulmonology team.
Third, read my freaking chart. Really. It comes back to this all the time with adult hospitals and physicians. “Do you have lung issues?” Seriously, I was asked that question. (Not by this doctor. Another wonderful adventure years ago.)
So a procedure today had to be rescheduled for next month, and I have no idea what we’re doing with the cancerous spot on my arm, except I’m not taking the med anymore to treat it.
Which brings us to the big lesson, here:
I have lived in my body for 36 years. I have a very, very well-tuned—exquisitely well-tuned, I’d say—sense of status within it. I know when “something is not right”, to quote Miss Clavel. And I don’t think I’m exaggerating when I say that that instinct, and my parents’ equally honed instinct, has saved my life on a few ocassions.
Doctors and medical people need to listen to me. I’m not always right. But when I say something is the med, it’s the med. When I say X is happening, and it’s because of Y, it probably is.
It’s basic science. When you do an experiment, and you add a variable, an things go haywire—it’s not because of everything that came before. It’s the variable you just added. That thing has pushed the balance over the edge. Remove that thing—balance restored.
*I am on vastly fewer meds now than before transplant. That being said, I’m still on what the average person would consider “a lot” of meds.