Cranky Fibro Girl

Harnessing the healing power of snark

The Arrival Of The Hostile Alien Intestinal Bacteria

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or, “The Day My Old Life Died”

Part Two in a series. (You can find Part One here.)

You know that old saying, that “fish and company start to stink after 3 days”? Well apparently the Hostile Alien Bacteria never got that memo. Because when they arrived they pulled right up onto my front lawn with their jumbo-sized recreational vehicle, unloaded some ratty old patio furniture, sat down, and immediately started smoking in their underwear, making it very clear that they weren’t going anywhere.

It all started off so innocently.

A week after my 35th birthday I got what turned out to be strep throat. So, okay, I did wait a few days before actually going to the doctor and getting some antibiotics, but compared to the rest of the story I’m about to tell you, that was some gold-medal quality self-care right there (for me, anyway.)

AND I was being all responsive and proactive about my health, and requested a different antibiotic than the one the doctor was going to prescribe, because I’d had problems with that one in the past.

So I was feeling pretty good about myself (you know, except for the sickness and all), when a few days later I began to have what we will just refer to here as, “intestinal distress”. But I thought, “Well, antibiotics do upset my stomach, so it’s probably just that,” and assumed that it would get better after I’d finished taking all the medicine.

And then I began to develop additional symptoms, like fevers, the shakes, and the inability to tolerate food. But I thought, “Well, it’s probably just the flu,” and figured that it would pass in a few days. (Are you seeing a pattern here?)

So finally, after 12 days in a row of diarrhea, fevers, shakes, and being unable to eat or drink anything, I began to think, “Hm-maybe I should go see the doctor again.” (Important Side Note: Apparently the most you should ever go without treating these symptoms is 3 days so, in the immortal words of Heather “Dooce” Armstrong: “BE YE NOT SO STUPID!”) Actually, what got me to the doctor-FINALLY!-was the fact that my husband was about to go out of town on business for a week, and by the Sunday before he left I started to hear a voice in my head that kept repeating, “You know he’s leaving tomorrow, and, so, just in case you have to be hospitalized, you should go find out what’s wrong with you.”

Never in life have I had a thought like that. Never. Ever. So clearly my poor body was waving red flags and shooting off warning flares wherever it could. However, even with my brain shouting “HOSPITALIZATION IS MOST LIKELY IMMINENT, DUMBASS! You maybe wanna DO something about that?!”, I still didn’t take the whole situation all that seriously.

And, OH, how I would come to regret that.

(To be continued)

You Don’t Know What You’ve Got ‘Til It’s Gone

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But in this case, I was glad to see it go.

The past four months have been so hard for me, pain-wise. Which of course means that they have then been so hard for me, life-wise, as well.

Finally last week I decided to go and see my fibro doctor, to see if there was anything else I could do to help manage this STOOPID illness, and lo and behold, there was!

Instead of tweaking my Lyrica, which is so hard for my body to handle after a certain point, we tweaked an anti-depressant that also works like Lyrica, impairing your brain’s ability to feel pain.

And oh, how my world has changed in just one week. I started feeling better the very next day, when I realized that, in addition to the pain, I had also gotten stuck in a depression. That seems so obvious now, but of course I can never see it when I’m in it. The pain -and accompanying depression-ground me down so slowly, bit by bit, that it’s like every day another, slightly darker, filter is placed in front of my mind/vision, until the way I’m seeing and interpreting the world just seems normal.

And so, God Bless Antidepressants!

Unfortunately, whenever this happens to me I am unable to write. For one thing-and I am not exaggerating here-just the simple act of getting out of bed and walking to the kitchen to say goodbye to my husband in the morning feels like climbing Mt. Everest. And then add that feeling to every other action I have to perform merely to get through that day, and it is impossible for me to even pull my blog up on the Internet, much less use my mind to generate a post.

However: things are definitely looking up here in Cranky Land, and I am working on getting the words and the funny flowing again.

So thank you guys so much for sticking with me through all these ups and downs. It really supports me in being able to tell the truth about living with STOOPID fibromyalgia-even when it’s a bit (or a lot) dark and dreary.

OK-talk to you soon. And as always, May The Cranky Be With You.

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.

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

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.”

It’s A Good Thing I Really Like You, Dr. Chiropractor Whose Last Name I Still Can’t Pronounce, Even Though I’ve Been Seeing You For A Year

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So this morning I woke up and my right hand had that tingly, my-hand-was-asleep-and-now-it’s-waking-up feeling, except it never went away. And I couldn’t really feel four of my five fingers. Which of course is EXACTLY what I needed to spice up my day-fearing the loss of my dominant hand.

But I was actually fairly calm-for me-and when the office was open, I went to see my chiropractor. (Important Side Note: this was the third visit this week. Monday it was for my lower back, which has been giving me a lot of lip lately. Yesterday it was for my jaw. When I came through the door, the dr. asked how I was doing. Me: “Back-good. Jaw-killing me.” Dr.: “So you don’t want me to check your back?” Me: “Well, I suppose you can check it.” Dr.: poking around, and then landing on one particular spot. Dr.: “That is not good.”)

So I got on the table today and he started doing all his chiropractor-y things. Then he asked me what I thought I had done.

Me: “I don’t know. Maybe I slept on it funny.”

Dr. : (examining)

Dr.: (indicating that I should roll over onto one side)

Dr.: “Yeah, that can happen when you sleep…”

Dr. (trails away)

Me: “Funny. Yeah.”

Dr. (as he is performing a particularly bone-crushing adjustment) “Actually, I was gonna say, ‘like a bonehead‘.”

Things Not To Say To Someone Whose Chronic Illness Has Not Yet Stablized, Even Though You Think You’re Being Funny

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So today I had to go to the eye doctor because I needed a new prescription.

The Eye Doctor: “So, how are you doing?”

Me: “I’m not gonna lie, I’m really not doing very well right now.”

The Eye Doctor: “Oh, I’m sorry to hear that. What’s going on?”

Me: blah, blah, blah, health problems

The Eye Doctor: “Well, let’s see if we can help with some of that.”

Me: “That would be great.”

The Eye Doctor (picks up an instrument): “First, let’s check and make sure the brain is still functioning. Because sometimes it isn’t.”

Me (completely serious): “Please don’t say things like that to me right now.”

The Eye Doctor: performs his examination

The Eye Doctor (apparently not having heard what I just said): “Good news-the brain is still with us!”

Me (feebly): “Um, yay?”

The Eye Doctor (doggedly cheerful, yet oh so clueless): “I bet it’s nice for you to get some positive news these days.”

And then, there was really nothing left to say.

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.

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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When Crankiness And Pop Music Meet

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So this week has pretty much turned out to be the week when it has become necessary to change around almost every single one of my (numerous) medications. Some were no longer working, some were working well in one way but were also causing some unpleasant side effects, and some needed to be added as various diagnoses were fine-tuned.

I feel like I’m in a circus and I’ve been asked to learn how to juggle three different colors of balls. And, after MUCH trial and error, and effort and energy, I have. But just at the moment when I was able to perform that routine smoothly and professionally, the ringmaster came in and told me that I had to change out all my yellow balls for orange (without stopping the juggling, mind you), oh, and by the way, you also need to ride this unicycle while you’re juggling, and, oh, we also think it would be great if you could hold onto this pole with your teeth and balance all of these spinning plates at the same time.

So I’m pretty much just waiting for the whole shebang to come crashing down at any moment, and am only hoping to escape the crash without experiencing actual decapitation or loss of limbs.

Naturally it was necessary for me to visit all of my doctors again, and as I believe I’ve mentioned here before, none of them are close to me, or close to each other. So I’ve been spending A Lot of time in the car this week, and to help the time pass more quickly I’ve been listening to kicky, upbeat pop music as I drive.

That worked great for a while. But then I reached a level of frustration, uncertainty, and despair yesterday that caused me, upon opening my mailbox and discovering its contents to yell, “You SUCK! I reject you! You do not even deserve to be brought into the house to be thrown away. I’m just gonna leave you RIGHT HERE!”

Yes, that’s right-I punished my mail by giving it a Time Out.

That was the sign that I’d finally reached my own personal Tipping Point, and now the songs that had, only hours earlier, been giving me such joy to listen to, just caused there to be more yelling. Especially this one song, whose catchy lyrics stated, “I don’t care if the bills are paid/as long as she is with me, I don’t care if my soul is saved, as long as she forgives me.”

And I found myself arguing, “Uh, you will TOO care! Because she’s about to break up with your ass! Because if you don’t pay your bills, then you won’t have any electricity, and she’s not gonna stick around very long if the only kind of date you can offer her becomes, ‘Sitting Around In The Dark In My Empty Apartment, Because All My Furniture Has Been Repossessed and The Electricity’s Been Shut Off. Oh, And You Can’t Use The Bathroom, Either, Because There’s No Water.’ Not to mention the fact that you are no  longer able to shower, and so you constantly smell like ass. Wake up and make some damn money, for crying out loud!”

Obviously my mail is not the only thing that needs a Time Out.