Category Archives: RA

Fabulous Friday, RA

Fabulous Friday: Moving through Fear

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I know that worrying is fruitless; it catastrophizes the future while stealing from us the present.

Logically, I know this.  I also know that, roughly 99% of the time, I am pretty much worry-free.

I am grateful beyond words for this.

But that 1% gets me.

As I had expected, I am responding extremely well to Enbrel, as demonstrated by the fact that I can do anything even while I’m tapering off the prednisone.

As of this coming Sunday , I’ll be steroid free.  And I fear it.

I know that the medicine is working. I know that I can’t be on steroids for the rest of my life.

I know, I know.

But I also know, or rather, remember, that the first time I tried to taper down, I was immobilized.

And of course this time is not that time; I have been tapering down for the past 6 weeks or so. 15 mg, then 10 mg, then 5.

And now I will be on 0 mg.

A friend of mine told me that she had an appointment to get a shot in her shoulder, and that she was scared of the pain.  She’s to the point where she can barely move it–lifting her arm above her head is damn near out of the question.

I have so, so, so been there.  “It will hurt,” I told her.  “But the difference it will make will be worth it.”  I remember getting that injection, how I was so scared of it, but afterward, I realized that the shot did not hurt anywhere near as much as the shoulder did.

And when the relief flooded over me, I would have easily done 10 of them to find that same relief.

My fear of the shot was far worse than the shot itself.

Perhaps it’s the same with the steroids. I’ve been on them since April. I know that they cause all sorts of bad stuff, but I’ve been with them for so long, I’m afraid of being without them.

I’m already seeing the side effects of weaning off them. I only thought I was exhausted before.  I had somehow lost track of how much the prednisone was “propping me up,” masking the depth of the exhaustion.

But I’m adapting. If I want to do anything like write, have clean clothes, clean house, it has to be before work. And it may only be 10 minutes or 20 minutes or a single paragraph written, but it’s something.

I’m making it through a 40 hour work week, give or take for doctor’s appointments and taking off an hour or so here and there toward the end of the week when I can’t hold my head up anymore.

And I won’t “win” NaNoWriMo this year.  But still, I’ve laid down about 6k words in 13 days, which is far more than I did the entire month of October. And, I’m managing to limit the self-editing, so that I’m just plowing through.

And that’s something fabulous. 

 

 

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.

 

 

life getting better, RA

Fabulous Friday: Fabulosity Part 2 (Living with RA)

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(This is a part of a multi-part series [the total number of entries I as of yet do not know] regarding the question, “How has your life gotten better since you were diagnosed with RA?” The first part can be found here.)

Way #3 I prioritize my time better.

Because I have only so much time, and have only so much energy,  I have (as a result of mindfulness), have become much more attentive as to how I spend my time.

Before RA, I would have won an award for the World’s Best Procrastinator. I’m pretty sure I have a statue somewhere in my notebook-shrouded office. I procrastinated with everything, not just the things I didn’t like to do.  I’d spend time willy-nilly, mostly as an escape from a to-do list, as if I had an unlimited supply of time, and then scratch my head when stuff didn’t get done.

Now, I set goals both weekly and daily. I may not hit them (I usually don’t hit them), but I can see where I fell short.

The two best organizational tools for me have been a monthly organizer and a two-columned stenographer’s notebook.

The organizer is slightly-larger than notebook sized, and I put my doctor’s appointments, meetings, etc.  I also track my bills with it, listing in the side-column all of my monthly bills, and I check them off as I pay them. In the “daily” column for each day, I write the amount I paid and the confirmation number since I pay all of my bills online.  If there’s ever a problem, I can retrieve the information.

I also use it to make notes like, “Call So-and-So” on Friday, “Dinner with So-And-So” on Saturday. Things like that. Because my memory IS a sieve, and I will have every intention of meeting someone or calling someone, but unless I “schedule it,” I won’t remember.

Sometimes I forget to write them in, but I have done much better with “remembering” since I started adding to the organizer.

The second tool I use is the stenographer’s pad. This is probably THE most important thing to keep me on track, and I only started using this about a month ago.

Every Sunday, I spend about 20 minutes planning my goals for the week.  I am both focused on time and activity.

What are the things I want most to get accomplished this week in different categories? For cleaning, it may be cleaning the blinds. For writing, it is “book progress,” blogging, making quotation images. Even catching up on emails that I’ve put off for too long.

How much time do I want to spend on housework?  Well, the answer is none, honestly, but I’ve schedule 240 minutes (an average of 40/minutes a day). What’s my goal for the book? For blogging? For exercising?

I break those things down into 20 minute increments (which can be halved if need be), and do one thing at a time.  As I go along, I’ve needed to tweak things, add things.  For example, I “schedule” meditation and dog time so that I won’t forget them. Plus, I can, you know, make that check mark that I so dig.

Here’s the thing: I almost never make my goals, falling short in almost all of the categories.  Flares happen, exhaustion happens, deciding to go somewhere happens, getting caught up in re-watching Better Call Saul happens.  Too much reading happens.

But at the end of the week, I look at how close I came to meeting the goals and list reasons why I didn’t make it.  What where the areas that fell shortest? What were the areas that came closest to meeting the goals?

Was how I spent my time worth not accomplishing my goals?

Sometimes it is, sometimes it isn’t.  And sometimes things are entirely out of my control.

I still procrastinate. I still move slowly. My house is nowhere near as clean as I wish it to be.

But I’m accountable, and that’s a start. And I don’t think of it as “failure” when I repeatedly don’t meet my goals.  It’s still a hell of a lot more than I did before I started making them, and I’m making progress toward meeting them.

And, in a bit of unexpected irony, as soon as I typed “things are entirely out of my control,” I had discovered that I had locked myself out of my house.  Which, as I’m waiting for someone to come and let me in, I’ll get to the next way my life has gotten better.

I LOVE my new back door and the doggy-door with it.  A friend promised me that a doggy-door would change my life. It has. It really has. I can schedule appointments or run errands after work without having to worry about the pup busting a pipe.  It’s probably changed my neighbors’ life as well: sometimes I forget to close it before dragging my ass to bed.

I do try to do better. But onto the next thing:

Way #4 I’m a lot less stressed overall.

Sure, I have those moments when I get frustrated, panicked, and scared, but they seem to be far more fleeting than they used to be.

With RA, I’ve found that if I stress out, I pay for it doubly. Not just the stress of the moment (and the aftermath of things left undone while tweaking in my stress), but afterwards. For me, stress is a major trigger for a flare.

Funny enough, when I first made the connection, things got worse (way, way, way) worse before they got better. Apparently everyone has different triggers for flares–flares being  acute episodes of inflammation and pain (thanks www.arthritis.org for the definition).  According to some self-reporters, different things cause flares for  people. For some folks, it’s sugar or dairy, for others, it’s gluten or red meat or infection or a host of a thousand other things that they know of.

The only thing so far–for me– I’ve been able to definitely connect to a flare-up is stress.

And when you know stress will make things worse (which, after a point, it always does, inflammatory disease or not), and you’re stressing cause you can’t get your stress under control, which is making you stress more because the end result will be harsher…it’s a cycle that won’t end without outside interruption.

So I meditate. Very short periods (I have gone beyond monkey-mind, I think–my “monkey mind” is more akin to a Mexican jumping bean on meth.), but consistently.   And things are seeming to arrange themselves in a way I didn’t actively plan.

But because I’m scheduling time–or at least blocking dedicated chunks of it to specific tasks–I’m getting more done, being accountable, and not beating myself up for what’s not done yet because I’ve made a sincere effort to accomplish things.

Overall, I’ve noticed that my stress has gone down overall because I’ve taken an “active” (as “active” as meditation and scheduling can be, I suppose) step toward lessening them.

And, for a chronic procrastinator,  that’s a huge step, with or without a cane.

RA

Straight Outta NSFW

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I do not want this blog to be about RA.  Not constantly, and not as its focus. I want it to be about writing and good stuff and chipotle and unrepentant cats. I currently have 86 drafts: half-finished (or barely started) posts about everything from current events (not so current since they’ve been stashed) to writing to celebratory stories of pure awesomesauce.

It’s a big, big world out there, and something is always happening.

If my writing delves into RA, which it is apparent that it will, I want it to be about the inner transformation that is possible because of it. What happens through RA it is far more important to me than what happens from it.

And so, I have started a list of ways that my life has changed for the better since my diagnosis. I am writing them to post over a few “Fabulous Fridays.” (The first of which is here.) I was officially diagnosed about 5 months ago. It is still new. Things are still unknown, still changing. I suppose they’ll always be changing, RA or not. Just when I thought I was becoming accustomed to this new life and comfortable in what I could expect, things change again, and I realize that I have no idea what to expect from life any more.

I’m living in the vast ocean of the unknown.

“46 & 2” was the song of the week. The one I needed to hear over and over and over. It’s the song of change, of transformation, of excising “what could’ve been.”

I’ve been crawling on my belly
Clearing out what could’ve been.
I’ve been wallowing in my own confused
And insecure delusions
For a piece to cross me over
Or a word to guide me in.
I wanna feel the changes coming down.
I wanna know what I’ve been hiding in

I spent many years digging through and picking scabs, believing that I must get to the root of “it,” the “whatever,” the root of the issue, the root of the problem, in order to burn it all away.

I’ve always been a “Why girl.” Why’s the sky blue? Why does my cat hate me? Why are people hypocrites? Why did this happen to me? To them? To us?

Something has happened, though, and I have either moved through this stage or I have found it’s no longer necessary. Not for everything, at any rate.  I no longer require a “why” in order to choose my “what’s next.”

It’s the difference between spending endless energy on pondering “Why is the sky blue?” and being more solutions-focused. “Okay, so the sky is blue. Is this something that needs to change? If so, what do I do about it? What can I do about it?”

When it comes to issues like dropping things, much like changing the color of the sky, there’s not a whole lot I can do about it, other than focus on getting replacing my dinner plates with plastic.

I’m still clearing out what could’ve been. Perhaps that’s part of my de-cluttering challenge. There are some things that “could’ve been,” but will not be. I’ve accepted that. There are other things that may yet still be, but cannot be right now.  Swimming with dolphins, for example. Or road trips.  I’ve accepted that as well.

As for my list, I’m going to go ahead and skip to the end. The last item on my list (saving the best for last and all that jazz) is, quite simply, I’m straight outta fucks to give.

What this means for me is that, if someone gives me the shifty eye because I’m on crutches or use my handicap parking tag, so be it. I’ll smile and keep on stepping. It means that if someone attempts to draw me into their drama, I’ll swing my London lilac-coiffed, steroid-inflated moon-head toward them and say, quite calmly, “Not my circus, not my monkeys.”

It also means that if I’m gonna have to use a cane, I’m going to have a rocking-as-fuck cane.

Rocking-as-fuck
Rocking-as-fuck Sun-and-moon-and-stars. I’ll just call her Khaleesi. 

What this means is that I’m not as accommodating as I used to be–I simply can’t be. It’s not that I have given up the notion of service or of kindness. My day job title is secretary; my self-styled job description is “Serving People Who Serve People,” and I’m fiercely proud to do so.

But I am learning my limits, and I’m learning a whole new kind of exchange rate. My energy is my currency, and I’m learning not to spend it haphazardly. Everything has an energy price-tag attached; everything has a price.

And, as I write this, I have a treble-flare: my feet, my jaw, my neck.

But I’ve gotten exactly what I wanted:

I wanna feel the change consume me,
Feel the outside turning in.
I wanna feel the metamorphosis and
Cleansing I’ve endured within

This is what change feels like. This is what the outside turning in feels like. This is the metamorphosis.

Change has never been painless for me. In order for change to occur, for movement to occur, something must be lost or killed or moved away from, and something else must be found or birthed or moved toward.

Change always involves loss.

This is a cleansing, a wiping away of all that is not necessary. It is liberating, and it is consuming.

Despite the steroids, I’m not angry. I know that I tend to use the word “fuck” quite a bit when I’m angry, but this more…something. Pure. Unadulterated. Fuckery. It is a bit frustrating at times, but it seems that my fury has burned away, destroying with it the false self, the petty little bullshit and concerns and distractions that left me listless and directionless and stole away my energy.

I am not angry. I am joyful. In a halle-fucking-lujah sort of way.

I AM fabulous-as-fuck.

I could be better–I could always be better, but right here, right now, I’m fabulous-as-fuck.

Thankyouveryfuckingmuch.

Credits:

  • Cat on Fence: My own cat who never had any fucks to give.
  • Cane: Nova Medical Products. Image from Amazon.
  • Lyric excerpts in italics from “46 & 2” from Tool’s album Ænima, copyright 1996. Lyrics found at  azlyrics.
Mindfulness, RA

Fabulous Friday: Fabulosity Part One

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In a Facebook Rheumatoid Arthritis group that I’m in, someone posed the question: How did your life get better after being diagnosed with RA?

Not necessarily because of RA, but after you found out you had it?

I marked it, saved it for later for when I was a) not hurting so badly and b) could actually think of ways my life has gotten better.

My answer, when I had sketched it out, was far too long for a Facebook post. In fact, it’s far too long for a single blog entry.

So I present to you, Part One.

I.     I have become more mindful.

I say this one first, because it is the foundation for all the rest of the ways my life has improved.

Within the past few months, I have incorporated meditation into my morning routine, a short piece of time where I try to do nothing but follow my breath. It’s a bit funny…everything comes along just as I sit “to sit,” as they say, and that’s when the dog’s butt must be scratched, the wild cat who detests me decides to rub against me, and the cats in the far bedroom knock something over that may or may not make it dangerous to walk into my bedroom.

But I sit.

2. I also take 20 minutes in the morning and use it to attempt to learn something new.

I have what may be a literal ton of books in my house–many of them I haven’t read. I’ve made a vow with a passion that Brienne of Tarth could appreciate: I  will not get any new books until I read the ones that I have. I’ve been tested. There are so many things out there I want to read, and I am ever-so-grateful for Amazon’s wish-list feature.

oathkeeper

Aah, my precious. Is that an Oathkeeper in your pocket, or are you happy to see me?

But I have so many books that I have and, at one time or another, wanted to read them. So, I read them first.

Right now, for example, I’m reading Dealing with People You Can’t Stand: How to Bring Out the Best in People at Their Worst by Dr. Rick Brinkman and Dr. Rick Kirschner.

I think i won it for raising my hand at a customer service conference I went to several years ago.

It’s a decent read, at least at 20 minutes at a time. I don’t know that it’s affected my behavior in dealing with people. In fact, I don’t know that it’s directly changed anything except pointed out the irrationalities of some of my own behaviors.

It’s just one of many elements that have been introduced within a short amount of time. But I am different.  I deal with people differently. I deal with my time differently.  I deal with forgiveness differently.

My life has deepened; it has–perhaps not more–but different meaning.  What I love has been magnified:  a flower that is where it “shouldn’t be,” a shared laugh with a friend, really, really good coffee, the feeling of accomplishment at adding another 1,000 words to the novel.

What I don’t love has lessened or fallen away:  the attraction to negativity, the addiction to distraction.

Mindfulness–as it’s progressing for me, anyway–has been the single biggest change in my life, but it has set the stage for every other positive that has happened since I was diagnosed.

It reminds me that flares are temporary, life–with or without   flares–is fleeting, and my proverbial clock is ticking. It forces me to examine the question: What do I want to do with my life?

Rumi said, “Let the beauty of what you love be what you do.”

RA has, at the very least, sharpened my focus and led me, perhaps kicking and screaming, in small steps toward the beauty of what I love be what I do.

I won’t go so far to say that “RA is a gift.”

I am SO not that Zen.

But it has brought about changes for which I am grateful.

And that is something.

(Image Sources: Featured Image taken by my cell phone; Brienne with Oathkeeper from HBO’s Game of Thrones found here.)

RA, writing

Plot Twist

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plottwist

The great thing about having rheumatoid arthritis is that I learn something new–almost every day.

Today, for example, I learned that it is possible to get isolated fever in the heel of one foot and the ball of another at the same time.  I  also learned that my Fred Flintstone feet suddenly have more curves than Marilyn Monroe.

flintstone feet  marilynmonroe

Whoda thunk it?

I can’t walk today. I’m sort of dragging myself around only for mandatory things such as coffee and voiding coffee.

Important things.

So: Plot twist. No work for me today, even though I have piles of stuff to-do sitting on my desk. No work for me even though I have calls to make, people to chase down, lists to put together, things to type, and supplies to order. No shopping for me even though I’m dangerously near to being out of coffee and coffee creamer. These are two things that, along with dog food and cat food, I MUST, MUST, MUST always have in the house. Toilet paper, I’ve discovered, is definitely desired, but not mandatory since, in a pinch, other paper products can fill its space.

But coffee? Coffee creamer?

There are no substitutes.

Since I can’t do housework today (oh, darn), I can at least spend some time in the cat’s head again. The novel, while not exactly “ticking along,” is definitely moving along. Slowly. As if it were moving toward coffee despite its best intentions to stay perfectly still.

I hit 28,000 words a couple of days ago.

It’s a story of an almost Zen, smart-assed cat who loathes dogs and seems to have an opinion on everything. It’s a fun place to be.

A domesticated feline (my words, definitely not hers), she misses her wildness, her freedom, her nights spent hunting and her days spent napping in stolen sunshine.

I had read where authors speak of “letting the character show you who they are” and that the writer is merely an observer, not a creator. I didn’t really understand it until I got claws-deep in this project.

Her opinions are different from mine in some cases, and, I think I’ve held her back. Correction. I know I’ve held her back. Censored her.  Because I didn’t want “that kind of book,” or I didn’t want her words attributed to me. Because we are similar, but we are not the same.

So. Plot twist. I’m letting her out of her proverbial carrier, removing the kitty muzzle, and letting her go.

There’s no telling where I’ll end up with a cat in charge.

Image sources:

  1. Plot Twist : Grammarly on Facebook
  2. Fred Flintstone https://retiredruth.wordpress.com/tag/fred-flinststone/
  3. Marilyn Monroe: http://shannonmarie1510.buzznet.com/photos/bettypagemarilynmonr/?id=68045773
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.”

Continue reading I Got It →

acceptance, adaptation, RA, Rheumatoid

Looking for the Next Right Action

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RemytheRARAte

Remy from Ratatouille, or, as I like to call him, Remy the RA Rat (Bastard).

We must let go of the life we have planned, so as to accept the one that is waiting for us. -Joseph Campbell

This is my starting point: Joseph Campbell. You might think it’d be easier to let go of the “live we have planned,” if in fact, you didn’t have one very planned at all. I have found that this is not exactly the case.

I am sitting on my porch, the rain on pause, at least temporarily, like prison guards on break, allowing the mosquitoes to break free from their larval lockup and wreak all sorts of vampiric havoc on woman and beast alike. Indian music is undulating in henna and saris, emanating just beyond the northeast corner of my yard.

That’s something you don’t hear every day in Southern Mississippi.

It’s a whole new world.

When I had “a maybe diagnosis,” I was okay. I was surprisingly accepting, and I found myself thinking, “I got this.” Life is all about adaptation, and I was up for the challenge. There was a space between what I was experiencing and the possibility of a label, some ocean of unknowing that I was comfortable in, that I could tread with no expectation. I had some good days and some bad, and some really, really good days, and some pretty bad ones.

But I was adapting.

The past couple days, I’ve been lost. It’s too soon for me to be pessimistic; and I’m not really pessimistic so much as just…stumbling.

I have a picture of this little mouse that probably looks a lot like Remy from Ratatouille, moving around the inside of my body is ruining tissue like power cords, his little teeth gnawing and shredding everything in sight. Today, he’s in my hip, running in circles with bits of black plastic flying over his head. I can type, and I can walk, but I can’t sit down or stand up. Yesterday was in my hands, his teeth scraping against the nerves, not doing any damage exactly, not causing any swelling, but setting every bone in my hands and wrists on fire.

I need to take away his matches.

Tomorrow, Remy may be napping, or decide to take a vacation to Belize and have a layover in my ankles.

That’s the thing about this rat, he’s more indecisive than I am.

I’m messing with my WordPress, trying to find something that suits me, and I haven’t quite found it yet. I thought I knew WordPress, but judging by my success rate on my own domain, I know very little indeed.

The point is: life isn’t about to change. It is changing. Every day, every hour. Walter White knew what was up:

You see, technically, chemistry is the study of matter, but I prefer to see it as the study of change: Electrons change their energy levels. Molecules change their bonds. Elements combine and change into compounds. But that’s all of life, right? It’s the constant, it’s the cycle. It’s solution, dissolution. Just over and over and over. It is growth, then decay, then transformation. It is fascinating, really.

(Breaking Bad, 1.1 “Pilot”)

I’m stuck, right now, looking for the next right thing, the next right action. Tomorrow will be better, whether Remy is partying down south or hanging with Mike in Belize. I just have to find that next right action, that next right step. Any step, maybe.

In the meantime, I think I’ll play some Koko Taylor on repeat.