So I was thinking the other day-you know how sometimes people get tattoos in order to advertise the various violent acts they’ve performed? Well, I decided that I need some sort of tattoo that warns people about the potential violence they could encounter, depending on how they react to my illness.
I really could have used something this the other day when I was hanging out on Twitter, and received The Most Obnoxious Type Of Non-Porn Tweet In The Universe.
I had just tweeted this:
“After rigorous scientific testing, I’ve discovered that in addition to fibromyalgia, magical thinking is *also* unable to cure migraines.”
Because I was trying to be funny and make light of my situation. Because, you know, that’s what I do, that whole humor thing.
Which this obnoxious person would’ve known if they ever actually read my Twitter stream for what I had to say, instead of circling it like a pack of hungry vultures, waiting for the slightest mention of an illness, so that they could then swoop down and assault me with offers to buy their self-proclaimed “magical cures”, all the while inferring that, if I had just been smart enough to take advantage of their awesome cure-all in the first place, then I wouldn’t have gotten myself into this illness situation in the first place.
Specifically, this person responded by saying,
“@jennyryan72 How about a better posture and alignment, more oxygen in the blood, better breathing and having all your muscles relax.” And then she added a link to her website to try and get me to buy some stupid machine that she claims cures all pain. As if I would buy anything in the middle of a migraine except some exceptionally strong narcotics.
So the first part of my tattoo would have to say something like, “If you respond to my pain by giving me suggestions on how I should change my diet, how I should exercise, by inferring that this condition is in any way my own fault, or by trying to sell me something, then I will cut you. I will cut you deep.”
Because, don’t fucking TRY TO SELL ME SOMETHING when I am in the middle of excruciating pain. And DO NOT FUCKING TELL ME THAT MY PAIN IS MY OWN FAULT. Because then I will have no choice but to maim you in a seriously life-threatening way. Because you are clearly an insensitive asshole, and you clearly deserve it. Seriously, no jury in the land would convict me.
(And while we’re on the subject of the law: If, at any time, you are lying, contorted and almost naked, on a cold x-ray table, and you are having some kind of mystery liquid injected into your lady parts by a male doctor who is not, himself, currently in possession of a uterus, and then, as you begin moaning and writhing about in pain, said doctor is stupid enough to say something like, “You may experience some cramping,” in a bored, detached tone of voice, not only should it be completely legal, there should actually be a law requiring you to jump up off of the table and strangle him with his own catheter.)
And speaking of doctors, last week I had to go and see my sleep doctor for my one-year follow-up appointment. I really hate going there because it is not close at all, and involves traveling on 3 separate highways, and then I’m only in there for about 5 minutes, and he pretty much spends the whole time typing on a computer and never looking at me, and tell me again why we can’t just do this over the phone? And apparently I wasn’t paying attention when I scheduled the appointment, because it was first thing in the morning, which meant that I had to do all of this in Atlanta’s rush hour traffic.
So I was kind of already in a bad mood when I got there, and unfortunately, it only got worse.
I had to fill out one of those forms where you tell the doctor everything that’s happened to you since the last time you were there. So of course I had to write a small novel explaining all about the fibromyalgia, and the high blood pressure, and all of my mental health stuff.
So he dutifully recorded all of that in his faithful computer, and then he said, clearly not having actually paid any attention whatsoever to what I just said, “So, are you having any other health problems?” And I was like, “Seriously?!” I don’t think I actually said anything out loud, but he must have felt the white-hot heat of my gaze boring into the back of his head, because he quickly added, “Not that this isn’t a lot.”
So then he came over to like, shine a light up my nose or something lovely like that, and then he said, because this is all he ever says, because he sucks like that, “Well, you know, weight loss would help.”
And I was devastated, because, hello, I’M DOING THE BEST I CAN! I KIND OF HAVE A LOT ON MY PLATE RIGHT NOW, IN CASE YOU DIDN’T NOTICE. AND JUST THE FACT THAT I SHOW UP EVERY DAY TO MY LIFE WITHOUT RUNNING DOWN THE STREET, TEARING OUT MY HAIR, RIPPING OFF MY CLOTHES, AND THROWING MYSELF IN FRONT OF A BUS IS A FUCKING MIRACLE.
So clearly the second part of my tattoo would have to warn others, “And if I ever see your lips even thinking about moving in the direction of forming the words ‘weight loss’, I will kill you where you stand.”
And, even though I really like him, and he’s helped me so much, I’m still kind of upset from the last time I went to see my fibro doctor.
I had just entered into a new pain cycle after a couple of weeks with no pain, and so he asked me if I thought anything in particular had triggered my pain, to which I replied that part of it was my cycle, part of it was a recent weather front that had brought with it some massive thunderstorms, and part of it was just everyday life stuff.
So, I know he wants to be helpful, but sometimes he’s really not. Because his advice was something like, “Well, you really need to figure out how to keep having more good days, so that maybe you can start getting off of some of these medicines.”
And I thought, “Oh, sure, I’ll get right on that. Because you know I have the power to control the weather. Because, I’m actually God in disguise-you caught me!”
And also, what is it with everyone and their fucking dog telling me I need to get off all these medications? Like I just woke up one day and thought, “Hey, I’m tired of chocolate, so I think I’ll start taking eleventy billion different prescriptions instead. OH, ME LOVE PILLS, NOM, NOM, NOM!” Seriously, people: I’m on these medicines because I need them. SO PLEASE BACK OFF.
Although yes, you are correct, they do have some side effects. And do you know the most serious side effect I experience when I take my pain medicine? I believe it’s something called, “IT RELIEVES MY FUCKING PAIN!”
Truly, it is kind of a miracle that I have not actually committed any violence yet, because Lord knows I’ve had good reason to. I mentioned this to my husband the other day and he said, “Well, I’m glad you haven’t. Because I’d hate to have to visit you in prison.”
“I know,” I replied. “Prison would not be kind to me.”
Although I’m pretty sure I could get some really good help in there with this whole tattoo thing.
Char Brooks says
So sorry about all these pain in the ass insensitive experiences. And I hope you feel better soon.
Being in the grasp of pain and dealing with idiots is a great combination for killing someone. I totally agree.
Pain trumps everything – and why people don’t get that is really beyond me!!
But, I get it and I am glad to hear you’re not taking ANY of this on as your fault – because it isn’t. And insensitive people abound – with their “helpful suggestions” at the most inopportune times.
I do believe that there are baby steps that we can learn along the way when we’re having health (or any other) issus – as we’re able to digest them. We can notice what helps – and what doesn’t – but not when we’re in pain. When we’re in pain, it screws with our thinking as you have so clearly articulated. And, that is the WRONG time for messages like getting off meds and losing weight as you have so clearly pointed out.
I believe that one day things will change – and I don’t know how this will happen exactly – but I really believe that we are capable of working with a team of provider’s that really get what’s going on for us as patients and find ways to help us that work with our needs and values.
The world is changing at lightening speed – and healthcare is just one example of things undergoing reform.
In the meantime, though, pain is pain – it hurts like crazy!!! And you know yourself well enough to know which messages don’t work for you.
So, good for you for managing this thing and also having the courage to educate the rest of the world about what it’s really like to deal with chronic pain. Your humor is honest and real – and a great strategy to cope with some really tough stuff.
You have my deepest respect and admiration – and I sincerely wish you good health and healing.
Char, thank you so, SO much for your kind comment. I know you are definitely someone who “gets” it.
Rosemary Lee says
I am definitely sending a friend your way. Her name is CJ and she will really appreciate your words!!