It’s Taken Me About Five Months, But I’m Finally Starting To Recover From That Time That Life Kicked Me In The Face

2015 February 27
by Jenny

About four months ago, to continue receiving treatment for my fibromyalgia I had to change from my longtime, familiar rheumatologist to a brand-new, completely unknown pain doctor.  This change came courtesy of the new law passed back in the fall making it more difficult for doctors to prescribe, and patients to receive, pain medications (about which, MUCH more later).

For a few months prior I’d heard rumblings here and there about the change, but I refused to think about it until the day in October when I tried to call in a refill of one of my medications and found out that I couldn’t get it.

At that point I flipped out into Code Red, Total Freak-Out, Emergency, Defcon One, Panic And Survival Mode. I was consumed by the terror that I was not going to be OK, that I would no longer be able to get what I needed to take care of myself.

I managed to get one of the two remaining appointments that my rheumatologist had open that week, and somehow eked out enough medication to last me the five days until my appointment. He’s treated me for the past six years, knows that I’m stable and consistent in what I need to manage my pain, and knows that I don’t abuse my medication. So I was hoping that he’d still write for me, the only difference being that he could no longer call the prescription in to the pharmacy or add on any refills; I’d have to come pick up a new prescription in person every 30 days.

But he dashed that hope pretty quickly. Whatever his reasons he said no (again-about which, more later), and told me I’d have to go to a pain clinic from now on and have them manage that medication. At which point I transformed into a seething ball of rampaging emotions, slingshotting back and forth between raging anger and paralyzing fear.

On the one hand I was furious, F-U-R-I-O-U-S with everyone who’d had a hand in imposing these rules on us pain patients, people who almost certainly had never experienced anything near the levels of excruciating pain that we have to live with every single day of our lives. I’m talking about the kind of range that is so all-consuming that you can barely breathe, much less speak. That’s why I haven’t been able to write about this until now. All I could think about was how I wished that I could somehow curse everyone involved with passing this law. I wanted them to suffer by having to watch their loved ones develop excruciating pain and debilitating illness, and then not be able to get the medications that would bring them relief.

Then under the anger was the fear-terror, actually-of  suffering. Not just the physical suffering, the pain that crackles through every moment, every breath, of every single day, but the emotional suffering that accompanies it. I’m terrified of the dark place I go to when the pain becomes unbearable and my mind tells me that the only way I’ll ever find any relief is if I’m dead.

So. I was able to get into the pain clinic the following week, and, being the OCD, anal-retentive, obsessive-compulsive firstborn that I am, I prepared a Ph.D.-level, multimedia  presentation of all the things I do to manage my illness, in order to prove that I “deserved” pain medicine.

I was completely at the mercy of this person whom I’d never met before. I didn’t know him, and he didn’t know me. And there must have been at least twenty people in the waiting room with me, so I knew I would only get a “drive-by” kind of appointment.

So there I was, about to see a complete stranger, who had the power to say “yay” or “nay” on giving me a prescription, and I had to figure out how to convince him that yes, I really do need this medication  to keep my pain at a manageable level, with maybe 5 minutes to present my case.

So, um, how the fuck was I supposed to do that?

 

Good Words

2015 February 20
by Jenny

“As for what’s next, I have no idea. But for now, I trust that not knowing isn’t the same as it not being possible.  ”

-Anna Guest-Jelley, founder and CEO (Curvy Executive Officer) of Curvy Yoga

 

February: Now With 80% Less Emo

2015 February 13
by Jenny

I love February; unlike most of the rest of the world, my personal new year has always started then. Plus, it means I’ve survived January, although happily this year was not that bad.

I’m also happy for you, my dear readers, because my emotions lighten up and my sense of humor starts to come back. So I feel less need to inflict my Angsty Emo self on you in every post. Which is not to say that things are not still hard. Today, for example, basically my entire body except for like, my left earlobe, is on fire at the level of pain that makes it difficult to breathe.

But, in the annoyingly consistent principle of Both/And, I have a happy thing to share as well.

I have spent the past couple of weeks in agonizing pain.

AND

Over those same couple of weeks I have decluttered  the entire guest room! The Room of Doom! The room where for years I’ve dumped everything I didn’t want to deal with (of which there were MOUNTAINS).

So now this:

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Looks like this:

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Plus Mr. Cranky Fibro Girl and I went to dinner with real, live, in-person people, AND THERE WERE CUPCAKES. Containing three separate forms of chocolate.

AND

I had happy things to write about in a blog post.

AND

I have to go lie down now with some serious pain medication, because: agony.

Once again, I am the Queen of Contrast (but happily for everyone, and 80%-less emo one).

 

One Of Those Days

2015 February 3
by Jenny

You know how sometimes you feel ground down to the barest possible nub of yourself due to spending the past 75,000 days in a row in a fibro flare-up, but you drag yourself to physical therapy anyway to be proactive in taking responsibility for managing your health, only to have your therapist gently inform you that, according to the surveys you’ve periodically filled out to assess your progress, you’re actually doing worse than you were when you started 3 months ago?

So you go home and decide to declutter a little bit more of the guest room and then put the meat on to marinate for dinner so you can experience some feelings of accomplishment? And then your husband calls while you’re in the kitchen so you’re bragging to him about what you’ve done so far today, but then you smell something really odd, whip around, and then yell, “I have to call you back!”?

Which you do, after a couple of minutes and a flurry of activity, and your reassurance that everything is now OK takes the form of statements like, “Don’t worry-it was only a small fire.”?

Yeah. Me too.

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Right Here, Right Now

2015 January 30
by Jenny

as you are.’ says the universe.
‘after…’ you answer.
‘as you are.’ says the universe.
‘before…’ you answer.
‘as you are.’ says the universe.
‘when…’ you answer.
‘as you are.’ says the universe.
‘how…’ you answer.
‘as you are.’ says the universe.
‘why…’ you answer.
‘because
you are happening now.
right now.
right at this moment
and
your happening
is beautiful.
the thing that both keeps me
alive
and
brings me to my knees.
you don’t even know how
breathtaking you
are.
as you are.’ says the universe
through tears.

–as you are | you are the prayer

by Nayyirah Waheed

Sometimes I get really stuck in my head, and tell myself that I can’t post anything here until I’ve crafted a beautiful, literary masterpiece (whatever that even means), which, as you can imagine, sort of stifles the creative flow and the joy I find in writing.

So when this poem arrived in my inbox, I decided to use it as a sign to just take the plunge and share a few messy, unpolished glimpses of what’s been going on around here lately.

read more…

And A Writer Is Born

2015 January 23
by Jenny

I’ve been decluttering a lot lately, and I happened upon a few of my earliest pieces as a writer-probably circa 1983.

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Today’s Moment Of Grace

2015 January 14
by Jenny

Amid the fatigue, pain flare-up, and mood cycling, a tiny glimpse of color and clear sky.

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Same Old

2015 January 7
by Jenny

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January, much like August, is not a very good month for me.

I feel dull and grey inside, bored with everything, and convinced that there is nothing new left to experience.

But sometimes, when I least expect it, a cracks forms in the grey and a tiny surprise peeks through.

Man-They Really Weren’t Kidding About That Whole, “Be Careful What You Wish For Thing”

2014 December 9
by Jenny

Because one day you might walk into your kitchen feeling cranky about cooking, and when your husband asks you what you want to make for dinner, declare, “I want the food fairy to bring us something to eat”, to which your husband might callously reply that, “there is no such thing as a food fairy”, and then unsuspectingly turn on the burner of your stove that is occasionally taken over by the gods of fire and destruction, causing an extremely ominous POOF! to echo throughout the kitchen and leaving an unresponsive appliance in its wake, at which point you look at each other and and ask, “Chinese?”, so that in an odd way the food fairy does save you from having to cook that evening, but with the consequence that Santa has to spend part of his dedicated Christmas budget on a new oven.

So let this be a lesson to you. Be careful what you say: the food fairy works in mysterious ways.

Featured Friday

2014 December 5
by Jenny

I just have a quick links to pass along today, as fibro has risen up to smite me for all the energy I expended over the holiday, because it TOTALLY SUCKS like that.

It’s an episode of the podcast, “Explore Your Enthusiasm” by Tara Swiger called “How to survive the holidays as an introvert”. But the things she talks about apply equally as well for someone suffering from chronic pain and illness. She gives a lot of practical ideas for how to navigate stressful situations gracefully while taking good care of yourself, as well as ideas for how to help yourself recover.

Extra Bonus Links:

OK, I lied. I just remembered 2 funny Thanksgiving-related items I wanted to pass along.

1. As a (self) certified Crazy Cat Lady, I love these “17 Cat Reations For Every Thanksgiving Situation“.

2. For the second Thanksgiving in a row, the website Buzzfeed asked the employees in its London office to correctly label a map of all 50 United States (confession: I’m not sure I could actually do that). Make sure you’re not drinking anything near whatever electronic device you’re reading this on.

Have a great weekend!