Cranky Fibro Girl

Harnessing the healing power of snark

Cranky Fibro Girl And The Hostile Takeover-Part One

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So it’s been three weeks since my surgery, and I was really hoping that my funny writing mojo would’ve returned by now. But I guess most, if not all, of my creative energy is being used to heal my body, which, ok, I guess I can live with that.

But I also want to get past this “not-writing” energy habit, because I could easily see three weeks of not writing turning into three months or more. So today I am going to write something (with no guarantees about its quality) so I can start to break through this invisible force field of resistance.

So I guess I will tell the tale of my little adventure in surgery, because otherwise this post would just consist of me yelling things like, “Dammit, Tigger! Stop peeing in my office!” And you know, there’s only so much narrative juice you can squeeze out of something like that.

So that lovely week started off as so many of my weeks do, with multiple doctors’ appointments, neither of which were close to me, and neither of which were close to each other.

At one appointment I got to have some more blood drawn due to my elevated liver function. That was really scary for me, because the doctor didn’t really explain what that was or why that was happening, and then he murmured something about possibly needing an MRI of my liver, and so that was when I pulled a hefty dose of Denial out of my toolkit and did everything in my power to pretend that that experience was not actually happening.

Then at my second appointment I got to check in with my sleep doctor and order more supplies for my CPAP machine, including my “mask of choice”, AKA “The Pig Snout”. I was also all set to practice some personal sovereignty, defined as Being The Queen (or King) of Your Own Internal Space, which I’ve been learning about lately  from Havi Brooks and Hiro Boga. Because I absolutely LOATHE having to be weighed and having to talk about my weight every single damn time I have to go and see a doctor, because DUDE-I’ve already got enough stuff to deal with without having to add Feeling Bad Because Of My Weight to the mix.

So this time I just told the nurse what number to write down, and then while I was waiting for the doctor I decided what I would say to him if he dared to bring up “The-W-word”. Namely this: “I’m sorry, but we’re not currently accepting feedback on anything related to weight at this time. We are only accepting feedback related to CPAP and sleep issues.”

So I was all set with my fun answer, but as it turned out he never even mentioned “The W-Word at all.” Apparently my inner sovereignty was so powerful that it flowed out to meet him before he even came into the examination room. So, YAY me!

And then I made it through the rest of the week until about midnight on Saturday, at which time commenced The Battle Between My Body And The Agents of The Hostile Takeover.

A few hours earlier I started having the most God-awful pain in my right side. This had happened to me before, and it was really scary because  nothing I did seemed to help it at all. And while it was here I was absolutely incapable of finding any relief. No pain medicine even touched it, and no position, no matter how much I contorted myself, brought me any relief.

Now you all know I have fibromyalgia (a chronic pain disorder), among MANY OTHER health issues, so you know I know from pain. But I’ve got to tell you that this was absolutely The Worst pain I’ve ever felt in my entire life. But I was prepared to white-knuckle my way through it-AGAIN-until I started throwing up, which had never happened during any of my previous attacks. So that, combined with the fact that I was unable to manage the pain AT ALL, convinced me to ask my husband to take me to the emergency room, where our adventure will pick up next time.

Stanford’s Robert Sapolsky On Depression

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Stanford Professor Robert Sapolsky, posits that depression is the most damaging disease that you can experience. Right now it is the number four cause of disability in the US and it is becoming more common. Sapolsky states that depression is as real of a biological disease as is diabetes.

Hm-maybe I can start letting myself off the hook.

Battered And Bruised

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So I have all these ideas for like three different cool posts but unfortunately, even though the spirit is very willing, the flesh is weak.

I have been spiking numbers higher than 10 on the pain scale for the last handful of days, so all of my time has been taken up with managing the pain, as well as all of the mental and emotional stuff that comes up when your whole world has shrunk down to, “OK, what’s going on in my body right now?, and “How can I make myself feel a little more comfortable?”

Thankfully I have very effective pain meds, a comfy  bathtub, and tons of great support, with people who check in with me many times a day to see where I am and what, if anything, they need to do.

Also, The Most Awesome Husband In The Entire World got me an iTouch for Christmas, and so now I pretty much have my own portable, hand-held, all-inclusive personal entertainment center with me at all times.

I said when I converted this site over to Cranky Fibro Girl that I would be writing about (in addition to tons of other things) my whole life experience when it comes to living every day with a chronic illness and chronic pain. And so this is a part of it, unfortunately. Days where the whole world shrinks down to, “What can I do in this minute to help myself feel a little more comfortable?” Not “better”. “More comfortable.” Because from this place, better is as far away from where I am as the moon is from the earth. And just about as impossible to get to right now.

So if anyone feels inspired, I would really like to request some gentle healing vibes/energy/prayers/thoughts sent my way. No specific outcome needed-just support and love and relief.

Thanks.

Jenny

Dear Everyone I Haven’t Quite Managed To Offend Yet: Today Could Be Your Day!

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Since this Tuesday marked the one-year anniversary of my diagnosis of fibromyalgia, I have spent some time thinking back over all the different stages I’ve been through over the past year.

These include such stages as Denial, Resistance, YOU CAN SUCK IT!, Anger, Amnesia, Stupidity, Amnesia About Having Amnesia, Depression, If I Finish My To-Do List And Clean My Entire House, Then I Will Be Healed, I Hate Everyone-ESPECIALLY YOU!, Hibernation, Bargaining, TAKE YOUR PAIN MEDICINE ALREADY, DAMMIT!!, You Should Leave Me So You Can Find A New Wife Who Isn’t Defective, Magical Thinking, Mania, The Act Of The Sound Waves Of Your Voice Touching My Nervous System Causes Me Excruciating Pain, Having My Husband Walk A Few Steps In Front Of Me Like My Own Personal Bouncer So That No One Will Touch Me,If I Have To Lie On This Couch For One More Day Then I Will Kill Myself, If I Have To Lie On This Couch For One More Day Then I Will Kill You, In The Closet About Admitting My Illness, and, THE HELL I WILL ACCEPT THIS.

Lately I have been hanging out in a new stage-The Stage Of Bling-and have been shopping online for all kinds of fibromyalgia bracelets, rings, pins, and the like. I was telling my mom about this the other day because I knew she would be happy to wear some kind of supportive paraphernalia on my behalf, when we had the following exchange:

My Mom: “So, does fibromyalgia have its own color?”

Me: “Um, no-OH!  Because other diseases TOOK all the good colors, so now we have to share.”

Apparently, when chronic pain is involved-around here, at least-all stages lead back to Being A Cranky Bitch.

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.

It’s Gonna Take A Whole Lot More Than Milk To Do This Body Any Good

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So I’ve been thinking a lot about my body lately- and honestly, I KNOW that you’re just as tired of reading that as I am of writing it, but, oh well, that’s what’s up for me these days.

I am especially thinking about my body after last night, when my husband and I were eating pizza and bread sticks from Pizza Hut. As I was preparing to divide up the “dipping sauce”, my husband said, “Oh, you can have all of it,” and my body apparently decided to celebrate this generosity by causing me to dump half the container all over the fingers of my left hand, and, HOLY MOTHER is that stuff hot. I don’t have a history of burning myself (although I did once staple my own thumb on purpose, just out of curiosity to see what it felt like, which is really neither here nor there, but this is probably the best opportunity I will ever have to work it in in even a remotely tangential way to any story), and so this might have been the first burn I ever received in my 36 years, but from somewhere deep in the recesses of my mind I remembered hearing something about putting butter on burns.

But thank goodness for Google, which I checked before I did anything, because apparently putting butter on burns is only The Worst Thing You Could Possibly Do, and Google was all, “Um, hi-welcome to the 21st century,” and I was like, “Wow-so this is what modern health care looks like!”

I feel like I’m coming out of some weird alternate universe after these past 2 years of being sick, which means I’m having to become reacquainted with my body. I don’t really know what to expect, and I also don’t really know what it can or can’t do yet. I do, however, know that the one place I am not going to for help with this situation is any kind of medical, health, or nutritional “authority”.  Because all of those people so obviously go out and smoke a gigantic bowl of crack before they come back and make their “official” proclamations, which we are all then supposed to unquestioningly follow. Here’s a perfect example of what I mean.

You know that whole stupid chart doctors pull out that supposedly tell you what weight you should be according to your height? Well back when I was in high school (’86-’90) it said that a woman who was 5 ft. tall should ideally weigh 100 lbs. And then for every inch of height after that, you would add 5 lbs. So according to this plan I, as a 5’2″ female, should weigh only 110 pounds.  Which will clearly only happen in the event that I suddenly become a refugee or a prisoner-of-war. Apparently the people (most likely MALE people) who compiled this chart were unaware of the fact that women are actually 3-dimensional beings.

Now we do have a friend who is only 5 ft. tall, and probably does weigh only 100 lbs., but she is definitely the exception rather than the rule, and I’m pretty sure that’s because she was constructed using only the bones of one tiny sparrow and a few golden clouds. She is very tiny and very cute-like a miniature doll you might want to pick up and keep in your pocket. And as a matter of fact she frequently has random strange men come up to her and tell her this very thing. That is, of course, the very last thing they say, right before she kills them and feeds their bodies to sharks. Which they clearly deserve  because, seriously-that’s just creepy.

Of course, if I really want to feel badly about myself, I need look no further than my grandmother, who, when in college, was featured as one of LOOK Magazine’s “Most Beautiful College Girls of 1941”. (And while we’re on the subject her husband, my grandfather,was a Double Ace in World War II, a well-known criminal attorney, and once tried a case in front of the Supreme Court.) So I guess you could say that THE BAR’S BEEN SET KIND OF HIGH IN OUR FAMILY, as far as notoriety and life achievements go. Which probably goes a long way towards explaining why it is So Very Hard for me to just rest and recover, given all these inherited genes that want to be out conquering the world. (Oh, and speaking of worlds, have I mentioned that on the other side of my family I can trace my ancestry back to the Mayflower through four separate family lines?  Four separate ancestors who ACTUALLY DID go out and conquer a new world? Seriously, it is a freaking miracle that my brain has not literally exploded all over my office, which is where I spend most of my days, totally not resting.)

It’s really f*&%ing stressful that my biggest accomplishment of late is figuring out what adjustments I needed to make in my daily treatment program that would allow me to once again have normal, rather than clown-sized, hands and feet, given this whole family legacy, as well as the fact that in his current postdoc position my brother routinely solves math problems where x=The Universe and Y=The Current Vibrational Level Of Human Consciousness.

Oh well, at least I still have some things: sarcasm, crankiness, and the ability to find a way to mock just about anything. And I’m still the first person people go to for entertainment, and for sharing the wacky things they see in life. Because, as my mom says, “You are the ‘Ass Person’ in the family.” (Truly, is there a better, more multi-purpose word in the English language than ‘ass’? I think not.)

Ha-take that, Pilgrims!

Seriously?

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You know those weeks where every single medical problem you have attacks you all at once? Yeah, me too. That pretty much sums up what the last 10 days or so have been like for me.

I’ll spare you a litany of my ills, except, have I mentioned here before that, because the Universe is apparently exploring the concept of irony with my own personal life as its classroom, the medicine I take to manage my fibro pain causes severe swelling, which in turn causes severe pain? (Oh, and Universe? SO NOT AMUSING.)

So I went to see my fibro doctor and begged him to please, please, OH PLEASE do something to relieve the ping pong sized edema in my ankles. I was thinking of something along the lines of possibly draining something out, or injecting some kind of pain medicine in, but do you know what he said?

“Well, some support hose would probably help you with that.”

And then he Kept. On. Saying. It.

Until finally I said, “Look-every time you say that, I just get this image of a 98-year-old grandma, hunched over, hobbling along with a cane.” Which was my polite way of saying, “Hell no! That will not be happening in this lifetime!”

And then, in what I can only assume was his genuine desire to help me find some relief, he said, “Well you know, they can measure you now so that you can get an exact, customized fit.”

And I thought, “Um, what?!”

Was that supposed to be some kind of selling point for me?

Because I’m sorry to report that, if it was, it failed. Miserably.

10 Things I Will Not Be Doing Today

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1. Re-shingle the roof, single-handedly, or as part of a team.

2. Suddenly realize that golf is actually a rich, complex, multi-layered test of both skill and artistry .

3. Run anywhere, not even towards a soda fountain filled to the brim with the ice cold elixir of life, Regular Coke.

4. Attempt to explain to anyone between the ages of 14 and 18 why verbs are so foundational to both the written and spoken language.

5. Humor anyone who implores me to, “Say something in Spanish!”

6. Heal myself of fibromyalgia using only the power of my mind.

7.Cease to be afraid of snakes, either real or imaginary.

8.Receive a download of all the government’s secrets, thereby becoming the Human Intersect.

9.Finally unlock the secret to successfully baking desserts that include Cocoa powder as one of their main ingredients.

10. No longer need to be reassured that, upon stepping foot outside after dark, bats will not swoop down upon me in order to nest in my hair.

(Inspired by this post.)

Oh, Look-I’ve Found Something Else To Rant About. What A Shock.

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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.

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