Fibromyalgia and Me: A Semi-Concise Retrospective, Part 3 of 3.

Year 6. 2010.

I've been blogging about my Fibromyalgia and the rest of my life now for a few years. Oddly there are quite a few people who find me by Googling "how long does it take to withdraw from Fentanyl?" I pray for them, knowing the awful depths withdrawal can drag you. Some of them write me to say “the doctor never told me what this would be like” and I try to encourage them that yes, it’s awful, but you can make it through this.

I know I am still relying too much on ibuprofen and Vicodin--I'm afraid to be in pain. And the Cymbalta I use for the Fibromyalgia seems to no longer help with the pain and all I'm having of it are the side-effects.

I spend the last half of the year clearing my body and brain of any extra medications: the Cymbalta is reduced to the lowest dose (with the blessings of my doctor) and I'm no longer taking my everyday dose of allergy medication since I feel foggy in the brain already. I figure I'll deal with the allergies as they come, and enjoy the clearer head I'll have without the pills. I pretty much quit taking the ibuprofen as it seems to begin eating a hole in my belly after a time. The Vicodin I will use when I really need it. No more preventative pain medications, just "as needed."

Year 7. 2011.

I can read books again!! After collecting books and books since I love to read and simply haven't had the concentration to do so, I'm working my way through the book piles. This is a happy thing.
I also decide that in a year the same amount of days will have passed no matter what I do with them, so what if I step out with a small amount of faith and choose to do something positive for myself with those days?

In mid-February I pull out the business card of a Naturopathic Doctor, given me by a friend a couple of years ago, and make the call. Set up an appointment. And the same week I get an appointment at the gym to talk with a trainer to help me exercise right and not cause flares or injuries that I know would just make me whine and quit. My Get-Well money is in play now.

It's June now. I'm taking steps toward a healthier, less whiney me. Sure, I get frustrated that things aren't moving faster. I still hurt, but it's generally lower, midrange, on the pain scale, the one where 10 means "please hospitalize me or at least shoot me with rhinoceros tranquilizer darts."
I try to deep breathe, I try to still my mind. I wake up better in the morning, but truth is, I'll never be a true morning person.  I still find putting any sort of dinner on the table a pain in the arse since I’m not a big fan of cooking, but not in the same “can’t lift my arms” sort of way.

It may be slow, but it is after all a process, something Merriam-Webster defines this way:
       Process
      1 a: progress, advance b: something going on: proceeding
     2 a (1): a natural phenomenon marked by gradual changes that lead toward a particular result     (2): a continuing natural or biological activity or function

So the fact that it is indeed something continuous, something that moves forward, is a happy thing, even if it isn’t instant. Fact is, I’m tired of this pain, tired of this fatigue, tired of this body. I can choose to stay the same, or I can choose to move forward.

I mean, why NOT me?


Skimmer's Recap: Fibromyalgia, while not my favorite companion, has taught me things. And baby steps are still steps.

Fibromyalgia and Me: A Semi-Concise Retrospective, Part 2 of 3.

Year 3. 2007

I file for disability. I'm turned down. I file again. I can't quite figure out how to do life since my body has turned against me. More pain. I feel weak. I annoy my family by whining and feeling sorry for myself. Grocery shopping seems impossible, putting any sort of meal on the table insurmountable. I try countless supplements. I research more and more. Maybe I can find some secret answer being hidden from me.

I'm obsessed.

Year 4. 2008.

Turned down for disability again. I feel gutted. I know I don't look different—no casts, no missing limbs--but I feel so very different from the person I was a few years ago. My only recourse is to get a lawyer to represent me, someone who knows the system, someone who can take my side in this. If I can't manage two different appointments or events outside the home in a week, how will I ever work again?

My doctor sends me to a 5 week class for Chronic PainManagement. I attend 4 days per week, some days so exhausted by the end of the class that I have to buy coffee to hopefully stay awake for the drive home. We are an odd mix: woman with migraines, men with back surgeries, another woman with Fibromyalgia, another with a neck injury, etc. etc. We are taught to meditate, to do relaxation exercises, to do gentle stretching, to speak only of positive things. We are told not to get involved in each other's lives, yet we do. The few of us with a sense of humor sustain each other in secret moments. We are corrected like small stupid children as they teach these things. This gets in the way of learning. Yet, I learn things.

My husband's dog gets very very sick in the midst of this and dies. We are both devastated. I consider giving up on the class (I only have 1 week left) but those in charge let me take a week off and return to finish.

My pain management doctor tries to kill me with many different heavy opiates. My husband says, "For somebody as stoned as you are, you should be having more fun." I decide to get myself clear of the final one, Fentanyl. The withdrawals are pretty much Satan incarnate.

Year 5. 2009.
The lawyer wins my case. All I have to do is feel humiliated in front of a judge and several others as I listen to them try to invalidate my experience. But I now have disability benefits, a small amount, since I worked part time when I last worked. But it's something, maybe I can use this for my Get-Well money. And clothes, I will surely need some new clothes to get well. And the occasional pedicure.

I am in a full flare of Fibromyalgia total body pain, fatigue, and confused head, when someone decides to fill me in on the “fact” that “if you only ate this way you would be fine.” She also tells me that “at least” I don’t have cancer or diabetes. I look at her and say, “The good thing about Fibromyalgia? You don’t die from it.” She smiles a great big cheerleader’s smile. I continue.” The bad thing about Fibromyalgia? You don’t die from it.” Her face folds in on itself. She quits talking. Finally.

Don't change that dial--i'll be back....

Fibromyalgia and Me: A Semi-Concise Retrospective, Part 1 of 3.

Having grown up holding my breath, my whole fight/flight/freeze system was pretty tender already. I think that each major emotional upheaval in my adult life just caused the skin on that system to become more and more fragile, until one day the final emotional hit came that tore through that thin skin altogether.

Year 1. April 2005.

I am doing a program at home that’s a combined upper/lower body set of exercises involving 5 pound hand weights. Suddenly, where I’ve been easily able to do 10 repetitions, I can only do 3 before my muscles simply won’t move anymore. Suddenly, on my first trip down the stairs in the morning, the bottoms of my feet seem filled with rocks. Suddenly, my solid nights of sleep become fewer and fewer, and my body is achy and stiff on waking. I have a few driving experiences where I turn a corner in a perfectly familiar neighborhood and ask myself, "Where am I?" I’m exhausted all day long—every day. What is happening??

I find myself pushing my doctor to actually test me for possible medical explanations. Her answer, (with a look of embarrassment for me,) is that "Sometimes when we deal with our emotional/mental issues, these other pains go away." JUST TEST ME PLEASE.

I am doing my own research online and in the library, and there’s a cluster of medical issues including Fibromyalgia with similar symptoms. It appears to be the least deadly of the bunch. I convince the doctor to test for all the others to rule them out (or not), and finally get her to do the thumb pressure test set up by the American College of Rheumatology on the 18 “tender points” associated with Fibromyalgia.

"Oh." My doctor looks up at my face as she presses lightly on places that made me flinch in pain. "You do seem to have Fibromyalgia," she says in surprise.

This has only taken 10 months, as opposed to the many years that others have suffered with Fibromyalgia before getting a diagnosis. I count myself fortunate.

Thank God I am already seeing a therapist. She helps me stay sane during this time.

Year 2. 2006.

More reading and more reading. More horrible days of exhaustion, my body feels heavy, like gravity has gotten stronger. More full-body pain, some days burning like fire, other days a flu-like aching.  My spirits head to the pits of Hell. I give in to the silly question of "Why me?" when I already know the more realistic question is "Why not me?" We are broken people in a broken world. Our bodies break down. Things go wrong.

I have a sleep study, and find out I do have sleep apnea. Maybe using the cpap machine will solve the poor sleep/waking up exhausted issue.

 It doesn't. Why not me?

to be continued...

Fibromyalgia and the Perils of Not Listening to My Body.

But there were sales, and the opportunity to go shopping with a friend at the outlets. And then there was my trainer the next day. So I didn't listen when I should have.

Shopping and training and pain, Oh My.

You see, in Fibromyalgia, the body talks. Much earlier than they used to, the muscles yell "ACK! NO MORE!" But I must be listening.

Nothing about me looks different to remind myself or others that something is different. No cast, no limp, no wheelchair. Just the same Julie that walked the earth 20 years ago, give or take a pound or 40.

A person with a back injury may walk with a cane. I've known one of those. A person with a broken bone wears a cast. I've done that. Even a person with a cold probably has a red nose. But with Fibro, we just look like our same old selves, because the working of it is inside us, in our central nervous system, where our bodies tell us that a gentle wave of pain is actually A TSUNAMI RUN FOR YOUR LIVES!

The funny bit (well, not at the time maybe) is that when I am in a flare, having overdone and caused a tsunami, even my brain gets scrambled. Those days my brain is a shaken snow globe, and the flakes of snow are pieces of words and thoughts and scribbles that just can't quite connect to make a whole ANYthing. I once saw a movie where a confused woman wore her bra on the outside of her shirt to work. When I started experiencing the "brainfog" of Fibro, I thought, "Oh no!! That could be me!"

Honestly at those times I fear for myself and my decisions. Should I be trusted with a car, or trusted out of the house at all?

I was there for all of last week and into this week, in FibroFlareLand. Hadn't really visited there for more than a day at a time in several months. Got a little cocky about that. Felt a little powerful. Thought I was strong.

And again I was humbled--I was reminded that I have this thing, this interloper and interrupter. But since this is my life right now, I'm trying to learn to muddle through--trying to show up for the gym, show up in my family's life, show up for myself.

These times of weakness remind me that in myself I'm not really all that strong. I'm at the mercy of this thing that lives in my body. I want to be all spiritual and be able to calmly say, "God's strength is shown in my weakness," but in all honesty, I don't know whether I'm doing that for Him. I'm still not sure what that looks like in this case.

The flares bring me down, but not as far as they used to, so I must be learning. Maybe that's where His strength comes in. I'll keep you posted if I ever figure it out.


What's your place of weakness?