Tag Archives: hope

RA

Fabulous Friday: Crazy Random Happenstance

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When I was referred to the rheumatologist in April, the first available appointment for our only in-network rheumatologist was in December.

Ah, the joys of closed-network insurance plans.

So I found one out of network, and was able to get into him in June.

Last Friday, I received a call that made my heart jump for joy (pretty sure that’s almost literal–I definitely felt something do somersaults).  “Ms. Ray,” one of the sweetest voices I’ve ever heard said, “how lucky do you feel?”

“Oh, honey,” I said in my best Southern drawl, “I have never felt so lucky.” 

“What are you doing Monday morning?”

“Anything you want me to.”

I had called to be put on the cancellation list and had been warned that there was “about 100” on it, but I assured them I could be there in an hour if they called.  My appointment, which was originally scheduled for 7 December, was now on Monday, October  5.

When the doctor came in, she knew my chart. She asked a few pointed questions and made a decision. “We’re going to get you off the steroids.  We’re going to try this. Many of my patients have seen a significant difference in 2-3 weeks.”

I’ve been on steroids since April, and, every time I’ve tried to come down on the dose, I’ve been incapacitated.

This was something new.

I told her that I had been tested and found to not metabolize folic acid properly, and had been given a pill to counteract it by someone who was not a rheumatologist. “Does that make a difference?” I asked her, after having been dismissed by the other rheumatologist.

“I’ll research it and have a nurse call you back.”

I walked out of there feeling respected and listened to and hopeful.

Hope’s a powerful, powerful thing.

Her nurse called me back within 2 hours of my leaving my office. This is unheard of in my experience. She had instructions for changing the methotrexate and changing the folic acid.

And that night, after I gave myself my first injection (a comedy best left for another time), I felt powerful.

And here it is, Friday, and I feel fabulous.

This may not be the answer, but at least it’s a new one. She had seen that the “old way” wasn’t working, hadn’t been working, and said that the time for waiting was over.

It’s time to forge new paths.

It’s been a rough week, overall. But damn if it’s not the start of something new.

Yes, indeedy. Fabulous Friday, indeed.

 

 

hope, personal

On the Tenth Anniversary of Hope and the Firefly Messengers

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(Featured Image: Free Firely Wallpaper via Google Play)

Technically, today isn’t the tenth anniversary of hope.  That came a few weeks later.  But it’s what I choose to celebrate today, August 29, 2015.

Ten years ago, I was writing in a leather journal by candlelight. We had lost power and, despite the sweltering heat and the ever-hungry mosquitoes, it was far more pleasant outside than in.

I was filled with regret, I think, that one thing left undone before Katrina hit.

We didn’t take it seriously; we on the Mississippi Gulf Coast had weathered storms before.  We knew what supplies to gather, what actions to take, what food to store up.

I was on crutches, a foot surgery that had me off of work and unable to carry my last box up the stairs. It was a box of writing: EverQuest fanfiction (ha!), some half-way decent short stories I had dabbled with, and some really bad poetry I shouldn’t have, and journals. Pages and pages of journals. I had been stuck in a stasis for the past two years, post-divorce and having no clue of who I was.

So I wrote. And wrote. And wrote.

Of my love for the fishcamp, of my annoyance at my cats, of my first relationship after my marriage, in all its beautiful tumultuousness, and all the guilt and shame of years of silence.

I wrote.

I was tired and annoyed when my mother came to help me load my stuff up. Cats in carriers, important things, work clothes.  I was not as gracious as I could have been.

But that last box remained as I said, “Fuck it,” and threw my stuff and myself in the car and headed to my parents’ house. The box remained at the bottom of the stairs; I refused even my mother’s offer of carrying it up for me.

I was definitely not as gracious as I could have been.

As I wrote by candlelight, my father told me that I should stop. My mother told me I should stop. “You’re just going to rehash everything.”  They were right, of course, at least half-right: I did rehash everything. But writing is how I think. It’s how I process and refine my thoughts and beliefs.  I realize now that, at least on some level, it’s how I breathe.

I didn’t really have much of a choice.

My mother had also told me to “Cut the Polly Anna bullshit out.”

Before the night I was writing, I was okay, in that okay-sort-of-way that meant I didn’t understand a damn thing.  “We lost…” someone would say, and I would counter with something positive.  “The damage!” someone would exclaim, and say something uplifting and no doubt cliche.

Over and over and over again.

Now, in the present, I recognize it as shock, something so terrible and encompassing that my mind couldn’t process it. I saw a silver lining everywhere. All I could see were silver linings.

Until I broke, and then I didn’t anymore. Not a single silver lining.

That one thing left undone, and no way to see the consequences. Roads were flooded, blocked by debris.  There was no way to get to the fishcamp, although my dad valiantly tried until the water was too high, even for his high-sitting truck, and we had to turn back.

All I could see was darkness, All I could hear were stories of death and destruction through the radio.  The occasional “I’m okay,” text from friends when they’d go through wasn’t enough to keep my head above the proverbial water.

I was most definitely not okay.

They tried to comfort me, my parents, but I was inconsolable. I needed to be left alone with my darkness and my realization that I was not the strong person I thought I was: I was not able to maintain my okay-ness through the storm.

And I cried. Tears, fat and wet making the ink run against the page before I gave up trying to write. There was a great paradox: everything in me was exhausted, empty, and yet I was filled to the brim with fear. My cup overrunneth, and no amount of crying would stop it.

I hadn’t prayed in a very long time.  At this point, I was lost in the woods, God and faith and the core of who I was had escaped me, bounding like a rabbit just beyond the next tree.

And then I prayed.

Continue reading On the Tenth Anniversary of Hope and the Firefly Messengers →

Featured Fool, hope

Featured Fool: Zachary Quinto the Hopebearer

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I’m Zachary Quinto and I want to add to the chorus of voices rising up against the kind of hatred and ridicule that led to the senseless and heartbreaking suicides of Asher Brown, Seth Walsh, Billy Lucas, Tyler Clementi and Raymond Chase in just the past few month in this country. And those are only the names that we’ve come to know.

There are countless other teens and young adults who are struggling to find a sense of identity and belonging in a chaotic and often unforgiving world. To you I say: it gets better. There is help to be found. There are places to turn, there are people who will listen.

Start there, start anywhere, but start by believing that life is worth living and you will find your way. And I’m proud to be a voice that stands to remind you of that any time you ever come close to forgetting it.

Thetrevorproject.org 1.866.4.you.trevor is a place to start. Start there, start anywhere, but start by believing that life is worth living and you will find your way.

I’ve been accused of being a bit of a voice fetishist, and, if I’m entirely honest, I can’t deny it.  I don’t have the vocabulary to describe the parts of a voice, but I know that there’s a certain tonal quality that I respond to, a voice that, with its rise and fall, my heart speeds up and slows down.

It’s a matter of resonance, I suppose.

A voice can dig down deep, deeper than my gut, to the very marrow of my bones and set me on fire, make me believe them when they say the earth is square. or everything will be all right.  Others turn my back for me, and I’m halfway around the corner before I even realize I’ve been repelled.

There is power in a voice.  And when that voice lends itself to powerful words, that power intensifies, surging beyond the realm of limits and dips its toes in the ocean of the limitless.

Zachary Quinto has such a power.  His voice, his words, his naming of the victims of suicide has power.

If I’ve watched this video 10 times, I’ve watched it 100. Some days, I’ve been just beyond the scope of that power, wanting to believe so badly it hurt,  but afraid of getting my hopes up. Does it get better?

It does. It does. It does.

I was once told that a friend holds your faith for you until you’re able to hold it yourself.

Perhaps a friend is someone who holds your hope for you as well when it’s too much to bear, too much to hold onto.  They hold it and share it and eventually your fingers and hands and heart can come together again and keep it from spilling out as you carry it.

Thank you to Zachary Quinto, and for all of those who lend their voices and their power to making the world a better place.

Thank you for being a Hopebearer.

(b&w lighthouse  by John Curley, used by creative commons  license.)

Featured Fool

Featured Fool: Shane Koyczan, Master Alchemist

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(Image Credit: The Fool Card from the Gilded Tarot Illustrated by Ciro Marchetti)

I’m a bit behind on my “Fabulous Friday.” Thankfully, it’s not because I’m all out of fabulosity (cause I’m not!), but rather I’ve been trying to find words fabulous enough to do this entry justice. I just hope I have succeeded.

After getting lost in Youtube for a while, I realized I couldn’t wait til Friday.

One of my favorite books of all time is The Dodecahedron: A Frame for Frames, by Paul Glennon. I stumbled upon him (read: had it forced upon me) during a Lit class, and it’s definitely overdue for a re-read.

What I first took for “gimmicky,” twelve short stories, each reframing the one before it, was actually quite brilliant. Not only was each of the stories strong enough to stand on its own, but it was powerful enough to completely change the story before it.

It’s been years since I’ve read it, and yet the concept, if not the specific details, still sticks in my mind.

We think in language; we experience and remember in perspective. As each story reframes another, the perspective changes. The book itself was enjoyable and well-written; its theme is what resonates even now: reframing is alchemy.  Reframing turns lead into gold; it transforms pain into wisdom and beauty.

Reframing is the key to transformation.

We tell ourselves stories of who we are, who we want to be. These stories often contain strong elements of other people’s definitions, other people’s goals. Our reference points can be our heroes, (I want to be just like Sally!) or our nemeses (I want to be anything but like my mother), but they’re just one perspective.

Sometimes it’s easy to forget that the story we’ve created is incomplete. Not only is it unfinished, but it’s from a very, very, limited point of view. It’s just one side of the story.

There’s an old parable about three blind monks who discover an elephant. Each monk feels a part of the elephant, and describes it one way, but no one gets the whole picture. No one realizes it’s more than an ear, a trunk, a leg.

Shane Koyczan is, in my humble opinion, a Master Alchemist.

I’m not sure how I first ran across him, but it was with this video, “To This Day.”  It’s difficult to watch; I won’t lie. It’s one of those things, while terribly beautiful, is simply haunting.

It’s one of those things, in a sea of terrible internet memes, that you can’t “unsee.” It’s also something that you never, ever want to forget.

You should really, really watch it. You can watch it here. You can see his TED talk, which includes his poem here. You can also read it here.

(Note: It doesn’t look like my hyperlinks are showing up against my background. Until I figure it out, all of the “heres” link directly to his work.)

His spoken word poem is specifically about bullying, but in this case, bullying is the set up for Koyczan’s Master Alchemy.

Continue reading Featured Fool: Shane Koyczan, Master Alchemist →

Journey

Communication Breakdown

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Despite thunderous call-response drumming in the sky yesterday morning, I decided to brave the hike alone. I bumbled around a bit Wednesday morning, listening to the radio in the sky, and finally, I decided screw it. There are far worse things than walking in the rain, and I had been looking forward to this for a week.

Give or take the rest of my life, really.

My dad has a hairline fracture in his foot, so was out of commission, much to both of our disappointments.
So, without GPS but with fully charged camera batteries, I went. It was a completely different experience this time, in part because, although I was completely alone, I really wasn’t.

I stopped and sighed at the lotus pond, my pond, I think, although it’s a bit egoistic to say that. I do think of it as my pond. Although, there’s a bit of flawed language there, something that I was pondering while actually sighing at the pond, but that will have to be a post for another day.

Suffice it to say, I do feel that it is, in a sense, my pond.

Continue reading Communication Breakdown →