Tag Archives: prednisone

Fabulous Friday, life getting better

Fabulous Friday: Loving What Is

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I’ll admit I stole the title from Byron Katie’s book of the same name, but I’m sure it has something to do with flattery.

Or something.

It’s been a bit of a rough week. I’m on my (I hope! I hope!) final leg of my prednisone journey, and on Sunday I started a 5mg dose, down from 10 mg. So much for that “uphill battle” thing: the trip down is far rougher than the trip up. Including the ‘roid rage and my flipping out over the bullshit mockumentary of the horrors of Planned Parenthood, which ended with my yelling at someone I really respect, realizing I was yelling at someone I really respect, and hiding away for the rest of the day.

Not my finest moment.

But going down is worse.

Because I had calmed down (way, way down), I had missed how much I had been “propped up” (almost quite literally) by the prednisone.  A couple of weeks ago, I went from 15 mg to 10 mg, and I could feel a difference energy-wise, but it wasn’t a huge deal. I  wasn’t flaring up every other day, so I knew the Enbrel is working.  Going down another notch on the steroids, however,  has pretty left me dragging myself around, kinda-sorta moving from task to task.   A bit of swelling started on Wednesday in my hands, and I’m hurting.

Not all days are good ones; not all weeks are good ones.  And yet, here I stand, A little over 9 months since my first flare-up, and I’m in better shape than I ever would have imagined at that point.

When I’m asked how I’m doing, I answer, quite honestly, “I’ve had much worse days.”

Because I have. Much, much, worse days.  I have constant nausea; in fact, I’m recommending to all my friends that they buy stock in Coca-Cola because I’m pretty much living off of Sprite and plain saltine crackers.

And yet, here I stand.

I am grateful that I have such a great boss. I’m grateful for my coworkers who, despite the sheer chaos of their days at times, still check on me.

And I’m very, very grateful for my friends.  I’m grateful when I see “long-lost” ones and play board games with them, and I’m grateful when I lose by negative 78 points because I don’t know what I’m doing.

I’m very, very grateful for like-minded people and the ability we share to lose ourselves in laughter.

I had committed to NaNoWriMo this month, and my goal is to lay down another 50k words and just trudge through the rough draft. I want it finished. Considering I barely broke 30K all year, though,it’s a long shot.

But I seem to excel at longshots. I’ve only written about 3k so far, but it’s more than I had written in all of October. So it’s something.

And it’s pretty fabulous from where I’m standing.

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.

 

 

acceptance, adaptation, RA

I Got It

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You know what Honey Badgers Don't Give?

You know what honey badgers don’t give?

It’ s a bit frightening to see a three year old with the attitude, spunk, foot stomping, and mad manipulation skills that took me nearly 19 years or so to master.

I fear for her parents.

She and her brother are like the sun and moon–I’m just not sure which is which.  She–the younger by 2 years–is blonde and fluffy; he’s dark and slender.  Their physical attributes are the least of their dissimilarities.

While the boy craves approval, and, thus, rarely actively misbehaves, the girl is a three-year-old honey badger with curls.  Approval isn’t something she strives for, instead, it is something she bestows upon those around her if the mood so hits her.

Despite these differences, despite their sibling squabbles, it is so evident that they love each other, very, very much.  If one falls down, the other is right there, even in the middle of having a hissy-fit, to pat the other on the back and say, “It’s all right, Bubba,” or “It’s all right, Boo.”

They hug. They dance. They fight.

They are amazing.

Two of the girl’s favorite phrases are “No” and “I got it.”

“I want” ranks pretty high up on the list, too.

We’ll ask her to get her shoes; we’ll say to someone else, “I’m going to get a glass of tea.”

If it involves getting something, she’s all about it, assuming her mood is amenable. “I got it.”

When she doesn’t want to share, the answer, if not the tone is the same. “I got it.”

When she’s really pissy, she has a mantra: “I got it, I got it, I got it.”

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