Any sentence that starts with the following words:
“And now that we have access to a whole herd of angry bulls…”
-Grant Imahara, from the Mythbusters
Irony
Planted Firmly In The Second Stage Of Grief
So after hanging out in The Land Of Denial from approximately October of 2007 until last Monday, I have now landed squarely in the Land Of Being Really, Really Pissed Off About Being Sick. I’m trying very hard not to inflict this on anyone else, but sometimes it is EX-TRE-ME-LY difficult. Because if I thought I had problems with people back when I worked in retail, they were nothing-NOTHING!!-compared to what I’m dealing with now. Which can pretty much be described as People Finding Out That I’m Sick, And Then Acting Like A Dumb Ass.
For example:
1. The day I received my diagnosis of fibromyalgia I posted it as my Facebook status, to update everyone who was sending me good vibes that day. I was SO relieved to finally have this sucker identified, and so, SOOOO happy to finally have my first significant pain relief in over a year. So I was pretty much reveling in the little things like, oh, once again being able to walk and use all of my limbs, and just about everyone I talked to understood what a big deal this was, and rejoiced with me. Except for the person who sent me the following email:
“Gluten intolerance’s most common misdiagnosis is fibromyalgia. We have a friend who was diagnosed with it for 10 years – miserable, on lots of meds for pain, etc…she went off of gluten and she’s fine – off of all of her meds.”
Honestly, when I read this email, I became so enraged that I started to shake, and I lost my ability to speak for a few minutes. Not because of anything related to the idea of going gluten-free. Obviously that in itself is pretty innocuous. Instead, it was how invalidated and dishonored this person’s response made me feel.
After all the agonizing pain, and suffering, and not knowing, and being misdiagnosed, and trying things that didn’t help me at ALL, and being afraid that this was what the rest of my life was going to be, I finally found someone who could correctly identify what was happening to me, and who gave me hope that there are lots of things I can do to get relief and to continue to have a really good quality life, and most importantly, SOMEONE WHO STOPPED THE PAIN. It was a Divine Gift, and I was so, SO grateful for it.
And then to have this person completely disregard and dismiss all my experiences of the past year, without knowing anything about me, what I’ve been through, what my doctor and I have talked about, OR ANYTHING ABOUT THE PRACTICE OF MEDICINE IN GENERAL, OR THE DIAGNOSIS OF FIBRO IN PARTICULAR, and then invalidate the only thing that’s helped me feel better or get relief from pain in the past year and tell me that IT’S WRONG AND I SHOULD STOP IT, BECAUSE THEY HAVE THE ACTUAL, CORRECT ANSWER FOR ME, made me want to rip out their tongue with my bare hands, and then feed it back to them through their eye socket. Obviously I didn’t do that. But I did think about it. A Lot.
And speaking of people who wanted to take things away from me, then there was this:
2. As I mentioned in a previous post, I had to go to the dentist earlier this week. I shared the details of my treatment plan with him, since he is one of my health care providers, and I assumed he needed to know what was going on with me.
I explained that I had been put on Lyrica, and that it was providing quick, amazing results in the area of pain relief, and that I loved it deeply with my whole heart, and wanted to marry it and have its babies (and I don’t even WANT children.)
And his response was, (after incorrectly identifying Lyrica as an anti-depressant-which it’s not; it’s an anti-convulsant-and lumping it in with other drugs that affect Serotonin levels-which it doesn’t; it has nothing to do with Serotonin) to ask me, “So, is there any hope that you’ll be able to wean yourself off of it in a little while?”
And I looked at this man and thought, “WHY IN THE NAME OF GOD WOULD I EVER WANT TO DO THAT?! I AM ALMOST COMPLETELY FREE OF PAIN FOR THE FIRST TIME IN A YEAR. WHY DO YOU WANT TO TAKE THAT AWAY FROM ME? WHY DO YOU WANT ME TO SUFFER AGAIN, STUPID PERSON WHO IS SUPPOSED TO HELP ME CARE FOR MY HEALTH?!”
Dumb ass.
And then, speaking of babies, I must also share this email I received shortly after the doctor pronounced his diagnosis:
3. “What kind of treatment plan have they suggested? Also, I’ve never asked but do you have any children? I have a friend who suffered from fibromyalgia and a chiropractor suggested that pregnancy could potentially “cure” it or minimize the painful effect.. It worked for her.”
I don’t even know what to say to this, because there are So! Many! things wrong with it that they all try and come out at the same time, and then my brain explodes into a million, billion pieces, and then I have to go lie down on the couch and watch my husband slaughter super mutants on Fallout 3 in order to recover.
Here endeth the first lesson on DumbAssery.
Let us go forth and irritate the crap out of others no more.
Better Left Unsaid
Here is a random sampling of conversations I’ve had with people lately regarding my fibromyalgia.
Today At The Dentist
My Hygenist (to the dentist, as he walks into the treatment room): “Well, Jennifer has just been diagnosed with fibromyalgia.”
My Dentist: “Hm. And what about trigeminal neuralgia?”
Me: “Yeah, I’ve got that too.”
My Dentist: “On both sides of your face, or just one side?”
Me: “Just the right side.”
My Dentist (in the tone of someone who has clearly never experienced pain so badly that they ever actively wished for death, but rather thinks the subject is an interesting one for a calm and rational exchange of thoughts): “Isn’t it interesting how the pain only occurs on one side of the face like that?”
Me: heroically mastering my desire to rip his head off and then beat him to death with it, so as to give him a more personal, less theoretical understanding of the pain which we are discussing.
Me (slowly and quietly, so as to ensure my continued self-control): “That’s not the word I would have chosen.””
Last Weekend On The Way To The Grocery Store
Me (explaining to my husband why I am listening to my iPod even though we already have music playing on the car stereo): Sometimes your music hurts my nervous system.”
My Husband: “Cool!!”
Me: “Um, no, it really isn‘t.”
Great Imponderable Mysteries Of The Universe #6
Random Ramblings
There was lots of excitement here yesterday, because I received a package full of new supplies for my uplink to the Borg collective CPAP machine. This was a very good thing, because apparently someone felt it necessary to bite their way through my previous air supply hose. TWICE.
****
I’ve been doing a lot of research on fibromyalgia lately, but I’ve discovered that a great majority of books on the subject were written before the advances of the past few years. This was especially brought home to me yesterday when I was reading to my husband a passage from a book written in 1998. If you felt a great eruption yesterday, don’t worry; that was just my engineer husband’s response to the helpful instructions stating that, “The World Wide Web is the segment of the Internet with graphics.”
What Really Happened When The Lights Went Out In Georgia
Ladies And Gentlemen, We Have A Diagnosis
So the bad news is that it seems I’ve been misdiagnosed for, oh, conservatively speaking, at least the past year.
The good news is that I went to a specialist and am now getting treated for what I actually have.
The bad news is that I have fibromyalgia, which frankly, SUCKS GIANT DONKEY BALLS.
The good news is that if you’re going to get fibro, now is apparently the time to do so, since there are a lot more treatments, including some new medications that allow you to not spend each and every moment in excruciating pain, which ironically makes this the first time I’ve ever been part of a current, leading-edge trend. THANKS, UNIVERSE. HA, HA, THAT’S A GOOD ONE! (Grrr.)
It’s an awful lot to take in, so any prayers/good thoughts/healing energy/holding in the light/chanting/drumming/nakedness/burning stuff, or any application of your particular method of invoking the presence of The Divine on my behalf would be much appreciated.
Ambrosia
Lately my husband has been playing the new video game “Fallout 3”, which takes place in a post-nuclear war world, a war which your character has survived by living underground in a vault. Eventually you escape your vault, come up to the surface, and must undertake various missions assigned to you by different groups of survivors.
As you travel you can acquire various random items that may assist you in carrying out your missions, like food, medicine, and weapons. One such item featured in this game is something called “Nuka-Cola”, which of course warmed the cockles of my soda-loving heart.
“It’s so nice to see that cockroaches are not the only things that survive nuclear war,” I remarked to my husband during a recent gaming session.
“Yes, it’s nice to see that even here, someone is still making soda,” he agreed.
“Because there’s really not much that a Coke can’t fix,” I said, at the exact moment my husband was attacked by a roving gang of fire-breathing ants the size of small houses, who were, ironically, impervious to the powers of soda.
“It’s like French fries,” I said, warming to my subject. “Because you know,” I said, struck with the gravity of the revelation I was about to reveal, “French fries are God’s medicine.”
Way To Go, America!!
