Cranky Fibro Girl

Harnessing the healing power of snark

See-I Always KNEW We Were The True Superheroes Of The World

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From McSweeney: The Only Thing That Can Stop This Asteroid Is Your Liberal Arts Degree.

“I’ve seen your work and it’s damn impressive. Your midterm paper on the semiotics of Band of Outsiders turned a lot of heads at mission control. Your performance in Biology For Non-Science Majors was impressive, matched only by your mastery of second-year Portuguese. And a lot of the research we do here couldn’t have happened without your groundbreaking work on suburban malaise and its representation and repression in John Hughes’ films. I hope you’re still that good, because when you’re lowering a hydrogen bomb into a craggy mass of flying astronomic death with barely any gravity, you’re going to need to draw on all the multidisciplinary reason and analysis you’ve got.”

And in other news…

From the land of, “Well, this is a total bummer”: Apparently, having your gallbladder removed does not magically cure your fibromyalgia.

So that would be Magical Thinking-0; and, uh, Non-Magical Thinking-“Ha Ha, Neener Neener, {{giant raspberry}}!”

Hitting Me Right Between The Eyes

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So I am reading this new (for me) book called, Sabbath: Finding Rest, Renewal, and Delight In Our Busy Lives, by Wayne Muller, and when I got to this passage my whole body started vibrating in recognition of the truth of what he was saying:

While recovering from a life-threatening illness, he writes, he realized that,

“I had always assumed that people I loved gave energy to me, and people I disliked took it away from me. Now I see that every act, no matter how pleasant or nourishing, requires effort, consumes oxygen. Every gesture, every thought, or every touch uses some life.”

Yes! This is what I have never been able to articulate to people who try and encourage me to “get out of the house and go do something.”

Say, for example, I wanted to go to the yarn store. Well, it’s not just “going to the yarn store.” It’s getting up, taking off my pajamas, showering, getting dressed, organizing things like purse and keys, opening the garage door, getting into the car, getting settled in the car, driving to the yarn store, parking, walking to the front door, stepping inside, being present with whoever is currently there, detaching from the people there, walking back to the car, driving home, taking off my clothes, and then putting my pajamas back on. And that doesn’t even include all the energy needed to look through patterns, decide on a project, find yarn for the project, and make my purchase.

“This is a useful discovery for how our days go. We meet dozens of people, have so many conversations. We do not feel how much energy we spend on each activity, because we imagine we will always have more energy at our disposal. This one little conversation, this one extra phone call, this one quick meeting, what can it cost? But it does cost, it drains yet another drop of our life. then, at the end of days, weeks, months, years, we collapse, we burn out, and cannot see where it happened. It happened in a thousand unconscious events, tasks, and responsibilities that seemed easy and harmless on the surface but that each, one after the other, used a small portion of our precious life.

…If we do not allow for a rhythm of rest in our overly busy lives, illness becomes our Sabbath-our pneumonia, our cancer, our heart attack, our accidents create Sabbath for us. In my relationships with people suffering with cancer, AIDS, and other life-threatening illness, I am always struck my the mixture of sadness and relief they experience when illness interrupts their overly busy lives. While each shares their particular fears and sorrows, almost every one confesses some secret gratefulness. ‘Finally,’ they say, ‘at last. I can rest.’ “

Amen.

Support-Of A Sort

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Yesterday’s conversations with two of my health care professionals:

At the chiropractor

Me (flipping over onto my back on the drop table and watching the Dr. examine my legs)

Me (deciding that as an adult patient taking responsibility for my own health, I should mention something that’s been concerning me lately)

Me (in the tone of someone preparing to open a serious dialogue with their health care professional) : “I think my fibro is making me bow-legged.”

My chiropractor (without missing a beat): “I think your fibro is going to your head.”

Me (bursting out laughing, because he is so right)

Talking with my coach/mentor/spiritual director/kicker-in-the-ass/therapist/listener/encourager/friend/fellow bad-ass babe and liver with a chronic illness who, for the sake of brevity, we will just refer to as Lynne

I am in the middle of trying to find a new medicine to manage my anxiety. It is not going well.

Me: describing the massive panic attack I recently had in my kitchen and concluding with, “And I was literally two seconds from passing out on the floor.”

Lynne: “OK. So what would’ve happened if you had passed out?”

(Important Side Note: I too am a Certified Life Coach, although I use my training with teenagers, to enable me to be a better tutor to my high school Spanish students. And so this is a question I myself have used many times with other people. But that did not stop me from sending Lynne nostril-flaring glares and rude gestures down the phone lines.)

Me: “Well, I guess I would’ve hit my head on the floor and gone unconscious. And then my husband would’ve found me when he got home from work. And then I’d wake up. And then I might be OK. Or I might be like Natasha Richardson, where everyone thought she was ok, but then she died like two hours later from her head injury.”

Lynne: “OK. OR-you might have passed out, started to relax, and then woken up.”

Me (grudgingly): “Maybe. But I like my answers better.”

The Skill I Wish I Didn’t Have

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So lately, I have not been doing all that well. There has just been a lot of shit going on around here lately:

-many, many, MANY days of spiking an 8, 9, or 10 on the pain scale

-helping my husband prepare for his job interview, and then waiting to see whether or not he got the job

-two weeks without any sun

-the Atlanta flood

-and the worst migraine I have had in years

And given the fact that I was on shaky ground to being with, it’s been re-a-ll-y hard for me not to go to the dark place in my thoughts and in my feelings. Especially since I was recently diagnosed with “rapid mood cycling”, something which falls somewhere along the bipolar spectrum. I haven’t wanted to talk about that here, because for some reason, even though I talk about everything else I have to deal with, I thought that if I mentioned this, then it would be the final nail on my crazy coffin.

So I’ve pretty much been at ground zero as far as participating in life goes-hitting the bottom and then s-l-o-w-l-y coming back up again.

And it’s particularly hard right now because it seems like everyone around me is making huge strides on their big dreams, and I am so far away from that place that my dreams are really painful. There’s nothing to say that I can’t have them at some point in my life, but I can’t have them right now. And that is really, really hard. I’m happy for those people, AND I am sad for me. Because the things I can do right now are so small, and feel so inconsequential, that it feels like nothing I do really matters or is in any way contributing to life.

So these things that I can do, I’ve heard them called many different things-connecting the dots, doing the next logical step, reaching for the thought that feels better, doing what’s in front of you. And so that is where I started this morning.

First, I was inspired to go and sit in the sun, the sun which I am especially grateful for after the week we had (because, did I mention there was a FLOOD? Here in THE CITY! A city which HAS NO PLACE FOR FLOOD WATERS TO GO!)

And then I did a little EFT: “Even though I feel so disconnected from myself, from God, from life, and from the creative flow, I’d really like to see if I can find a way to reconnect just a little bit.” “Even though I feel so empty and used up, I woke up this morning, and I’m still breathing, and still thinking, so I guess there’s some more for me here somewhere. I guess this isn’t ‘it’ for me.”

I just had to lay it all down-dreams, ideas, wishes, relationships, meaning, purpose, illness-I just had to put it all on the altar and let it go, because gripping onto these things so tightly was preventing me from being able to hear my next step, and from being able to find any peace or relief.

So after I had soaked up some sun, and surrendered, I looked over and thought, “Huh-I guess I could pull the dead leaves off of this chamomile plant.” And there it was-my next step.

And then as I was trimming the plant I heard, “I think you would probably feel a little better if you took a shower and got dressed in some of your cute new clothes.” Once again-there was my next step.

And then after I was clean and dressed I heard, “You know, it might just perk you up a little bit to do a load of laundry. But, hey-make sure you pay attention to me on this. I AM NOT TELLING YOU TO GO AND CLEAN THE ENTIRE HOUSE, DO YOU HEAR ME? One load of laundry, that’s it.”

And then I remembered that today is the day the new episode of my favorite podcast comes out.

And so it has gone today.

And eventually it will be time for my husband to come home, and I’ll have some company. And then it will be time for pizza Friday. And then it will be time to watch last night’s episode of “The Mentalist”. And then it will be time to watch my husband play his current video game, even though the music makes me want to rupture my own ear drums, (which I’ve actually done before-but not on purpose). And then it will be time to go to bed.

And then I will not only have survived, and made it through today, but I will have actually have thrived. Just a little bit.

Wherein I Must Once Again Unfortunately Revisit The Subject Of People And Their Dumbassery

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Although first I would like to say thank you to anyone who has continued to visit me here, despite the fact that I haven’t posted anything for a week and a half.

The good news is that the blog is FINALLY UPDATED! And it is so pretty! And clean! And did I mention the prettiness?

The bad news is that after 6 days of editing 550 posts, and then presenting my husband with a list of “back end” tasks which ended up taking him 7 hours last Sunday, neither he nor I could even think about my blog without wanting to punch something.

But happily that time has passed, and I am now able to continue my discussion of People Who Have Obviously Never Experienced Pain So Debilitating That They Have Actively Wished For Death, And Who Therefore Act Like A Dumb Ass Around Those Of Us Who Have.

So last week I was listening to a radio show on the internet where the hosts were discussing strategies we could use to help us follow through on the work of our dreams, once we had figured out what our dreams actually were.

A man called in to the show to discuss how he had successfully written and self-published a book. He said he set a deadline for when he wanted the book to be available for purchase, and then he just worked backward from that point, planning out and then completing each task until the entire thing was finished.

He didn’t say anything I hadn’t heard before, but what irritated me was the tone in which he said it, which was somewhere along the lines of, “Uh, DUH! How can you NOT know this?!”

You know the kind of person I’m talking about.

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Planted Firmly In The Second Stage Of Grief

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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.

Like-Minded Souls

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I went to a rheumatologist this morning to get some specialized help with all my health stuff, and not surprisingly, they had to draw some blood. This process never goes well for me, because if I am even in the same building as someone who is thinking about picking up a needle and using it on me, all blood flow immediately ceases, and my veins physically depart my body.

I made sure to explain this-in-detail-to the guy who was about to stick me, hoping that he would pick up on my extremely-loud-though-unspoken message of, “Please don’t hurt me!”

He listened sympathetically to my tales of woe, slipped the needle in so easily that I didn’t even feel it, and then replied,

“Yeah, well, some people suck.”

I LOVE him!

Just Because You’re Paranoid, That Doesn’t Mean They’re Not After You

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I’m fast arriving at the conclusion that my husband and I need to start communicating with each other in some kind of secret code, because I’m pretty sure that all of our conversations are being tapped. Not by another person, but by all the appliances, bath fixtures, and automobiles that surround us.

Because last week my husband had to go on a business trip, again, and as soon as he was out the door and on the plane, something broke in our house-again.

I don’t understand how they are able to time these things so perfectly. I can only imagine that, late at night when all the mammals are asleep, they call together their little coven of destruction for a planning meeting.

“Hey,” hisses the ice maker, pretending to form cubes, “he’s leaving again tomorrow. What’re we gonna do this time?”

“Hm,” muses my laptop. “How about mysterious brown goo seeping out of the washing machine?”

“No, we did that one already.”

“I know!” yells the kitchen faucet triumphantly. “How about a inexplicable loss of power affecting only the back 3 rooms of the house, leaving her uncertain as to whether or not everything is fine, or whether or not the house is only minutes away from exploding in a Giant Fireball Of Death?”

“Nope, did that one too.”

“Tiny lizard head popping up under her ottoman at the moment his plane lands in another state?”

“Already done.”

“Exploding transmission as she’s hurtling down I-85?”

“Well we tried to do that,” says the ice maker, shooting a dark glance in the direction of the garage, “but when it happened he was with her and he took care of everything. So, no more car plans.”

(The Explorer hangs its head in shame.)

And on and on it goes.

But this time they crossed the line, because this time, THIS TIME, they went after my bathtub.

And of all the appliances and fixtures we have here in our house, the bathtub is the one thing that has helped keep me sane and brought me some measure of relief during this season of excruciating pain. I REALLY NEED MY TUB.

That is why, when the mysterious hissing noise began, I was unable to deal with the possibility that something was wrong with my beloved bathtub. So instead I fell back on my Number One Rule For Dealing With Life:

“When in doubt ignore it, because it’s probably not as bad as you think it is; plus, it will probably go away on its own.”

Incidentally, this is the reason I’m no longer allowed to be by myself, alone and unsupervised, when my husband goes out of town on business. Which means we have a lot of conversations like this:

My husband: “So my mom will be here tomorrow afternoon, and will stay with you until I get back on Friday.”

Me: “You know, I was going to tell you that I really don’t need your mom to come down after all, because I was sure that I was a lot better.”

My husband: “Oh, really?”

Me: “Yeah. But then I was too tired to put the ice packs back in the freezer all by myself, and so I’ve spent all afternoon waiting for you to get home so that I could get some new ice for my joints. So then I thought, maybe I won’t tell him that after all.”

My husband (exhibiting an HEROIC ability to control his sarcasm): “Good thought.”

It’s just that I have such a hard time being in so much pain so often, and so lots of things (such as The Truth) get a little garbled between the time I experience them and the time I express them to other people.

Some people refer to this as, “being a lying sack of shit,” which is often the case. But I don’t think that’s the only explanation. I think that part of the problem is also that, somewhere along the line, my measure of what is reasonable and unreasonable got a little skewed, and is not actually scaled for humans, but rather matches up to some other kind of creature, like a woolly mammoth, perhaps, or a velociraptor.

This is the only thing I can think of that could possibly explain why I endured severe diarrhea and dehydration FOR TWELVE DAYS last year before seeking medical attention, because, to my mind, it was “probably not a big deal.” (“Well, stegosaurus wouldn’t go to the doctor for something silly like this.”)

Happily, I found a plumber who made emergency house calls, much to the chagrin of all my appliances (“T Rex wouldn’t have called a plumber for something as silly as this!”), my husband was able to fix the water damage, and we’re down to about 4% remaining musty smell. Which has freed up tons more time for me to grossly overestimate my level of wellness, and concoct completely insane plans for how to spend my days (“Hey, you know what sounds like fun? Triathlons!”).

But first, I could really use a nice, hot bath.

Dear Doctor On Call At My Physician’s Office Tonight

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I realize that I should’ve been a much better patient.

I should not have let the pain get so bad that I was forced to call the doctor’s office after hours and request a stronger prescription.

However.

In the future, if you should receive a similar call, perhaps you could remember that if someone informs you that they can no longer walk or raise their arms, they are in TREMENDOUS pain.

Which makes them feel really vulnerable.

So perhaps that is not the best time to mention that, in your considered opinion (based SOLELY on chatting with them for approximately 90 seconds on a tenuous cell phone connection, where only one of you can claim English as your first language) “they are probably suffering from lupus.”

What Not To Say: Part 4

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6. Projecting your personal “stuff” onto us.

Lordy Day, did I experience this when I made the mistake of telling anyone who was not me or my doctor that I was taking steroids to help control the agonizing, incapacitating arthritis pain that I was experiencing back in the spring.

I thought I was saying, “Yeah, my doctor gave me some Prednisone to help with the pain,” but apparently what everyone heard was, “I’m currently ingesting a special tonic composed of the leftover radioactive material from the Chernobyl disaster, laced with some accompanying drops of the dark black essence at the pit of Satan’s soul.”

Unfortunately, no one would ever just come out and say, “Hey, I’m concerned that you’re on steroids.” Instead I was regaled with many, many stories involving friends, family members, or someone they’d heard about while standing in line to pay for gas who contracted some kind of illness, stupidly took steroids, then found out that “that was the worst thing they possibly could’ve done,” and now they are crippled/maimed/disease-ridden/comatose/an invalid/dead FOREVER.

The implications in all of these stories were, of course, that a)I was an ignorant, reckless, idiot, who just leaped onto the first treatment plan that caught my attention without actually knowing what I was getting into, b)that I was selfish and inconsiderate for doing something that was clearly upsetting the person I was talking to, c)and that if I were a “good” friend/family member/whatever, I would immediately cease said upsetting action, and instead choose a treatment plan that they were comfortable with. You know, because my illness is all about everyone else.

Give me a fucking break.

It’s not like I just woke up one day and said, “Hm, what can I do that will recklessly endanger my health, as well as freak out the maximum number of people possible? I know-I’ll start using steroids!” I took that medication because I needed it. When it’s your turn to experience such excruciating pain that you can neither move your arms, stand, walk, or even get out of bed, then you can treat it however you want to. But I’m the one who had to live through all this stuff, and this was my choice. So BACK OFF!

Nobody but the sick person knows what they are going through, or what they need to survive. Telling horrifying stories to someone who is barely able to function as it is is just mean, especially when you’re doing it to “punish” them for upsetting you with their choices. Either come out and say what is bothering you, OR KEEP YOUR BIG MOUTH SHUT!