Weaning Off Prednisone

A poem has secrets that the poet knows nothing of. –Stanley Kunitz

I’ve now been weaning off prednisone since March. Slowly, to be sure. More slowly than I want. I’m anxious, impatient. Aren’t we all when we want so much to be ‘normal’? (It’s very hard for us humans to get the idea that there is a new normal, always.)

There have been setbacks. A staph infection in my elbow and of all things, around my fingernails, a terrible cold. Then, a sore hip/back, so I couldn’t keep up my 2 mile walks, (done for health and peace) but what do you do when you walk and get so sore you’re done for the day, or not walk and maybe, be able to go through your day without too much pain. I fought it, which seems to be my MO and then, finally I surrendered again.

I cuss ‘em all and regrouped. I’ve been doing that a lot. I hate it, I’m learning. I’m too dang stubborn. But, bright spot, as I’ve come off the meds. I’ve actually started writing again. Not typing, but working on poetry.

Though of all I write, poetry is the hardest, it is also the smallest and I needed small. Right now, a novel has just too many details to keep track of to work on. And I have several in need of good editing, which I don’t trust myself to do…, yet. So, poetry has been my go to. My salvation, as always.

That and this blog, that no one reads.

Small, concise contained pieces of writing. And I was right; there was something there, something waiting from all the typing I’ve been doing. It was not wasted time. Much of the little shadow work, which is what I call ideas and notes, are producing poems I’m pleased with, poems that are deeper than I once thought they would be, poems that ease my heart, somehow.

Plus, I’ve been having fun. No stress. No rush to get anything done, no pressure applied to self to be published, prove to myself and everyone else that my time has not being wasted. I’ve just been writing and loving it, so grateful for it, just like I use to before I stressed about publishing or trying to earn a little money with my work.

I’ve decided that idea is banned from this computer, this house, this mind. I’m too old to worry about proof, or acknowledgement. What I think of myself is going to have to do. I know I was born to be a writer. I knew it before I was ten years old. Why else do I see things the way I do and always have? Why else have I always notice the things/details  I do, did? I’ve always been an observer—a stand on the sidelines and witness kind of person. (I reminded myself of that scene from Gone With The Wind, where Scarlett is watching everyone dance, but can’t as she is in mourning, but her feet are playing happy. That is me, only it’s my thoughts doing the dance, my body is just fine watching.

Though I’ve always felt a misfit, I love my view and wouldn’t have traded it for popularity or less angst, then or especially now. It’s just me wanting to find the secrets I know nothing of.

What I CAN Do

“Her scar tissue, which she seems to amass both physically and mentally, may not be pretty, but they have become tougher than if she had never been wounded at all.”  -Donna Lynn Hope

Writers are persistent and resilient. They have to be. Cowards and wimps don’t survive. I should have this, right? I’ve always been tenacious, too much so.

Once I’d stopped struggling to move forward, stopped crying and feeling sorry for myself, (It seems I always have to do a bit of that. I hate it. It makes me feel so weak, a crybaby, but the tears always come despite how I fight them. I do wonder if all the wonderful people who face health and life challenges you see in the news because they are so strong and smile in the face of adversity…I wonder if off camera they have their little time of crying and self-pity. I’ve always told myself everyone does. Am I just making myself feel better?) Anyway, after I surrendered to the side effects of the meds and brain fog, I knew I had to regroup. Had to pull it together. Find a way to hold onto my writing, to move forward, to not give up, not tread water.

Move forward.

I had to stop thinking and fixating of all the stuff I couldn’t do. Figure out what I could do. I had to stop thinking about what seemed impossible and concentrate on what was possible.

So….exactly what could I do? What one thing could I still do to move forward with my writing?

When things get tough, how do you move on? How do you keep moving forward when it feels as if a jungle is closing in on you? When roadblocks seemed to turn up every day? Exactly what could I use as my machete? My bulldozer?

I didn’t know. No, ah ha, moment. Ideas were as dull as my head. I fiddled around in my office for a few days, going through papers and files, looking over the novel I had been editing, sobbing a little at all the work I had put into my novels and all the paper. Well, writing creates paper, even when you have most of your writing on the computer. (And just for the record, I can’t tell you how many times I’ve been glad of that.) Oh, and I was falling asleep at my desk (side effect of two of the meds I was on) A few more frustrated tears.

What could I do? I couldn’t come up with words or ideas, or inspiration. My mind and heart and whatever quality brought up words, sentences, writing was blank. Worse, everything in me felt dull. Still, there had to be something I could do.

Then it struck me. There were files and files of ideas I hadn’t yet entered into my computer. Pages of ideas in my journals I hadn’t transcribed. I might not be able to come up with anything new. I might be dull and without one ounce of inspiration, but I had shadow work, and notes, and ideas waiting to be worked on. I could get them ready, so to speak, for when I could do what I loved to do again. I could type.

So I typed. I spent six months typing in ideas from magazine tear-outs that had spark a poem or story idea and journal entries into their own documents. I let my fingers fly and I stop worrying about what I couldn’t do, wasn’t getting down. Stopped worrying about what this disruption might be doing to my writing dreams. I just kept typing and telling myself when I was done with the meds and back to my old self I would have all this material, waiting. Kept telling myself I would trust that I was putting in place the start of some wonderful work, that when I could I would gather up everything worth saving and make something worthy. It meant I had to have faith.

 A little voice kept reminding me, it happened before. That first time I battled MPGN. I’d forgotten. I’d forgotten a lot of what I went through. I wanted to forget. I wanted to put it behind me and never think of it again. I didn’t take serious; the chronic part of this disease because I wanted to believe I’d never have to deal with it again. That was just plain dumb of me. Thinking positive is great, but I wished I had had a battle plan from before and a diary, so that some of the things wouldn’t come as such a shock all over again.

Well, this time around, I am writing down the changes in my mind, body, spirit. I’m recording what I did to combat what. I’m making sure I have a battle plan for next time. 

So, Now What?

A bend in the road is not the end of the road…unless you fail to make the turn. –Author Unknown

So, now what?

I was back on heavy doses of prednisone. At first, 20 mg, which didn’t fog my mind, didn’t give me moon face, didn’t ruin my hair, didn’t puff up my shoulders and neck and back. I was so grateful. I was certain I could fight this battle and win quickly. Then, a month later, we got the numbers back from the lab.  Twenty mg. wasn’t cutting it. I’d have to increase the dose. The one positive was, now we knew. When it comes back again, no messing around. We attack with 30 mg.

Along with this news was the news that it would likely take six months to get the lab numbers we needed and then, another six months to wean off the medicine. With prednisone, you don’t just stop.

A year. It seemed like a lifetime.

I tried to write. Between falling asleep at my desk and brain fog I struggled, failed, then stopped. I had to regroup, rethink everything. I gave up the editing I’d been doing, too afraid of losing threads of the novel. My mind was less than sharp, to say the least. I was tired, depressed, fog-brained and feeling very vulnerable.

I hate that.

Ashamed to say, I wasn’t excepting any of this well. There were tears and anger. Frustration seeped through me. I kept asking, why me? Why again?

Truth was we’d been barely holding our own on the caregiving front up to this point. Each week brought more things we had to take over or deal with. All of that was affecting my writing, of course. Oh, hell, my life.

 I was mad…angry…furious. At…at life, at fate, at MPGN and its little dog, too. That was exactly how I felt: Wicked Witch of the West—black-dressed, hand-rubbing, ready to send out the flying monkeys witch. 

I was scared and sad. I felt guilty, too. Caring for my parent was affecting my husband’s retirement. We didn’t dare go anywhere for more than a few days and even then, we needed to check in, at least, once a day. That put boundaries on what we could do, where we could go. Now, my illness was grounded us even more. Grounding us from my husband’s favorite place. Dr. orders, no high altitudes, so no high Uintah camping/fishing, at least for me.

In the scheme of things, none of that was important and yet, it was. To me.

Foremost, was the guilt I felt. My parent, my illness, after all.

Worse still, the one thing I’d relied on to work through stress, emotions, the one thing I always depended on was writing. It had helped me through my youth, my angst-heavy teen years, my father’s too-soon death, kids, railroad widowhood, loneliness, losing pets, raising 3 teen boys, empty nest, caregiving. And I couldn’t seem to hold one thought, word, idea in my mind long enough to type it into the computer. And worse, my mind was dull gray, as creative and sharp as London in the fog. All my creativity lost in muck.

I felt lost and wrong and wronged. Done for. Everything felt ripped away. Yet, that was so, so wrong, too. Because I knew, I was so very lucky. I saw that every single day. There were those who had it so much worse, who were sicker, more desperate, with no support. I couldn’t look around and not know how very lucky and loved I was. I really had no right to be angry or sad, did I?

(Yet, I was.)

How in hell was I going to turn this around?

How was I going to make the most of the next year? And if I was honest, many other episodes through the rest of my life. I didn’t want to waste time feeling sorry for myself or woe-is-meing. I wanted something…maybe, even, everything of the next year to be positive or good. As good as I could make it. It was my life, frustrating as it was.

How could what I learned help others? Goodness knows, there were others going through similar situations? Worse situations. Couldn’t I help someone, somehow? With my voice? With my experience?

Because one thing I learned many years ago was helping someone was the best way to help myself. That didn’t mean I wasn’t charitable or kind. It didn’t mean I was selfish. It just meant I was being proactive. Right?  

Changes

Life happens while you are busy making other plans. –John Lennon

Where I’ve been

Two years ago, I stopped posting. There were many reasons, mostly time and hope. What I hoped was to dedicate time to editing, then have my work professionally edited, then submitting. Time was becoming more precious as the caregiving aspect of my life was getting more and more complicated and involved.

Truth was I felt like I was drowning. I had to try to save myself.

I had to rid myself of my jetsam and flotsam. The blog seemed a bit of a failure, a waste of time. No one would miss it if the blog weren’t there.

Still, it was a difficult choice. Writers are told we need a presence on social media, even before we publish. You know, a ‘platform’ but I find that is a double-edged sword. Social media is great but it is a time thief and maybe, even a big waste of time. I’m not sure. 

Besides, hope of publishing was shriveling a little more everyday. Every writer’s magazine I read, every change to the publishing world vs mine took me farther and farther away from that goal.

Oh, plenty of writers become successful in part because of their attention to social media. But time is time. How did I want to spend mine?

When I started the blog, I thought the journey I was on might help someone else. I like the idea of helping another writer, like me. You know, some someone dealing with caregiving, illness and trying to be a successful writer.  After all, the journey of caregiving and illness is universal, right? Throw in trying to have a little writing success—I was navigating obstacles and pitfalls. Learning. My mistakes and successes with all three battlefronts—maybe, I could help one someone else.

I could not deny writing the blog did help one person-me. That wasn’t a bad thing, but maybe, that time had passed.

Before I began writing my blog, I did look for other blogs about caregiving and writers, about MPGN and writers, about side effects of prednisone and writing. I found nothing. I could have used the help, the experience of someone dealing with those things. So why not? There had to be others like me. Fighting similar battles. Others living/struggling with chronic illness, caring for an aging parent, trying to write and have a little success. Maybe, my blog could help, maybe….

I began the blog. I enjoyed writing it. I blessed my son for the suggestion and help. I kept at it, despite the small following— until—I couldn’t help anyone anymore. Because I was floundering. Floundering to find things to write about. Floundering under the changes in publishing and other things.

And then some things…the caregiving things suddenly became impossible to share. Too private, too heart hurting. And that, stymied other things. It became another battle. I could not find the wherewithal to defend another front.

So, I stopped.

I missed it. A little less each week. I took the time and made huge strides with my Work in Progress. I started to feel a bit hopeful again. My disease was under control, had been for six years. I felt good. Able to handle the caregiving (the emotion and family drama, not so much), though it was getting more involved and complicated.  I worked on poetry in small pockets of time, which fed my soul, took some classes and spent time on fun and family. I felt I’d made the best decision.

So, Here We Go Again

Of course, the bottom fell out. My disease flared, which really took me off my feet, emotionally. Why I don’t know. I was well aware there would be flare-ups, that I would never be cured, that the disease would progress. Yet, even knowing that, deep down, I must not have believed it. I must have thought/wanted that none of that would happen. Not to me. (denial 101, ya think?)

The one good thing was there were no symptoms. I didn’t feel sick, just a little tired, but I was caring for an elderly parent, a home, husband, two cats, a dog, a yard.

The worst part is the cure. I wanted to cry when I saw the lab results. I did. Dr. directions: Prednisone for six months and another six-month weaning off period. I wanted to shake my fist, yell at…something.

Dealing with the side effects of prednisone again sent me into a down ward spiral of depression. Yet, as my Dr. and Husband reminded me, (damn ‘em) it was much better than dialysis. I should be thankful. And I was. Truly. And frustrated. And angry. I wanted to rail and rant. (I did) I was thankful we caught it early. And depressed and angry and sad. So many emotions flooded me, I couldn’t hold on to a one.

Worse of all, I knew what that medicine would do to my writing. (and hair, and face, and body)

As if the main line tap has been turned off. Nothing comes. Nothing. Blank. I can analyze while on prednisone, so you’d think I’d be able to continue the edits, but I was afraid. The creativity part is so gone and without it, what could the just analytical part do to my work? And my memory was shot. How could I keep the threads of a novel together? Could I lose what is unique about my writing? Would I take a chance of losing the best of my work? I just couldn’t take that chance.

Of course, about this same time things went a bit south on the care of my elderly parent front. Stress (or as my Dr. explained, how I handled stress) exacerbates my disease. This was not good.

 (Another ‘side effect’ was how vulnerable I felt, anxious and vulnerable. How much of this was the medicine? How much was just the return of this illness?

My writing would be derailed. For over a year? Stopping writing again would kill me. I was depressed enough. I wasn’t as sick this time. We’d caught it early, so I wasn’t sleeping all day, barely able to function. I had to keep busy, work at something. Something for myself.

I had to fight—I had to Do something.

I wasn’t sure what. I floundered. I’ve floundered before, but not like this.

(Finally, I surrendered—so I could fight.)

For the last eight months or so, I’ve been on a journey, fighting battles. It’s not the same journey I traveled before. I don’t really know what I’m doing. The battles are different, my response more complicated. I’ve floundered, and sunk and risen. I’ve failed and railed, crawled up, slipped down. I’ve learned some stuff. A whole lot of stuff.

I got my fight back.

Sometimes

On good days.

So, now what?

Lists:

I love lists. Many of my entries in my writer’s journal are lists.

I have lists of words I love, words I use too often, words I don’t know the meaning of, new words, favorite words to say, to read…just favorite words, good words, bad words. (I love bad words, they’re so…descriptive.)

 I keep lists of descriptive words, color words, action words, tag words, landscape words, plant words, texture words, scent words, emotion words.

I make lists of places to go, where I’ve been, stores to check out, character names, books to read, authors to check out, books I’ve read, books to buy and a favorite: lists of quotes. Lists of book quotes, writing quotes, garden quotes, encouragement quotes, pet quotes and just plain quotes.

Lists of wants, needs, wishes, to dos, dones, priorities, bills, titles or ideas for projects, projects, flowers and seeds to buy and grocery lists.

Memory lists, lists of things I need to include in each new writing project, lists that end up poems. All these lists end up in my journal in a nice vertical way with a bullet point at the beginning of each new line. The sight pleases me, eases my mind that I’m somewhat in control of all the chaos in my writer’s mind.

Lists organize my life, keep me straight on my tasks for the day, what I need to buy, what I need to write, research, things I need to think about, things I need to include in a piece I’m wirting. Lists help me push my mind to think of more, better, most important.

Lists jump starts my writing day, whether I use a list from my journal or make a new one.

I love to scratch off chores or groceries as I put them in my cart, titles I’ve used. No smart phone for me. I want the paper, the pencil, the line drawn across the page. I want simple, available, physical.

Lists are among my best writer’s tools and fit perfectly in my writer’s journal. 

Writing Journal: Finding Detail

I’m reading along, enjoying a book, the description, the dialogue, the plot, then the writer does something that grabs me viscerally, snags my gut, or heart, or the base of my throat…Then,  he/she does it again and again, until I’m there in that scene.

That writer has me…for as long as he keeps writing, if he never forgets that one thing: Detail.

Small, perfect details that crack open a scene or emotion. Details that have me whispering to myself, yes, that’s real, that’s exactly what that feels like, looks like, is. I know that, I’ve felt that, I’ve heard, smelled, tasted that, exactly. Or, I’ve never felt that, tasted that, smelled that, but now I know what it’s like and I’ve lived this other life.

Isn’t that why we read?

However, details can be hard to come by. I know. I’ve been trying to get the little details into my current book as I rewrite because there are places that feel flat. But how do I go about finding details about the old west when my life and experience is far from that? Oh, I can imagine, but I need to know, but that isn’t enough.

How do I turn my observations into enough, the just right ones? What details can I truly research? What do I have to find out for myself?

What I’ve figured out is I wish I’d done a better job of keeping my writer’s journal. There are good reasons why I didn’t, but now, I need to pull out faded memories in search of details from those busy years when my boys were small. When I was dragging them to museums, nature workshops, scouting events and I need to pluck those memories from moments I was just trying to keep track of three boys, keep peace, keep sane.

Research helps, but only so much, so re-experience has become the best I can do. Even then, the writer’s journal is crucial, because some details are so fleeting. Sometimes observations go by too quickly, my notes too vague and general. Being specific when you are moving through an experience is difficult. I’ve found that’s ok, if you write briefly and include a list of observations and quick impressions.

I’ve had to teach myself to do this and often, the way I do it in my journal is with haiku and lists. I remind myself to pay attention, think small. Think specific. Think specific to what the POV character experiences, notices. 

So, I'm trying to use my journal. To write in it every day. I'm trying to spend more time noticing the little things in my day. I'm looking, feeling, smelling...living with attention.

Crochet/Cross-stitching a Story

I grew up surrounded by women whose hands were never idle when they watched TV or ‘relaxed.’ My mother was a wonderful knitter and sewer, my best friend’s mom crocheted and embroidered, my grandma did every kind of handwork: knitting, crocheting, embroidery, cutwork, cross-stitch. Needlework was required for the girls in our church starting at the age of twelve. I was pitiful at it, too impatient and then, too ashamed by my finished project, a pitiful mess, from the stamped cross-stitch sampler to the crocheted purse to the knitted covered hanger, to want to ever try again.

Later, when my friends and I started filling hope chests I revisited needlework. I’d learned patience, at least a bit. (I’ve since learned, patience is an ongoing skill a person never completely masters.) It was my brilliant idea that for birthdays and Christmas we’d exchange things for our hope chests, preferably homemade. And it was a great idea, at least, I’ve thought so over the years.

What a wonderful thing that all these years later I still have tea towels and dresser scarves embroidered by childhood friends (some of which I haven’t seen since) as I began married life. I still have stacks of tea towels and pillowcases, so I never truly forget these wonderful friends. And it got us to learn handwork and figure out that hand-made things are the best gifts.

About this same time, I registered for a homemaking arts class for my senior year of high school. At the time I had no idea how much this class would help me find a safe, soft place to land every day in a hellish year. That year was profound for me. I lost my father and spent much of the year lost and adrift. I worried about my mother and found myself helping her make some pretty adult decision. That hour a day of quiet and discovering the importance of being still and doing something physical but intent like handwork centered me, saved me.  

Over the years, I’ve come to depend on handwork to work through problems in my own life or in my writing. More, I’ve come to appreciate how the slow progress of one row of crochet after another, over time, makes a whole afghan. One cross-stitch at a time ends up with a sampler worthy of hanging on my walls. That knowledge helps me face the daunting beginnings of a novel with less fear. I know word upon word makes a sentence, makes a paragraph, makes a chapter. I know little steps matter, maybe, more than big steps, and I’ve learned faith in my own ability to stick with something.

I’ve crochet over ninety afghans for family and friends. I’ve crocheted them one little stitch at a time. I’ve cross-stitched countless samplers, one cross-stitch at a time. I’ve struggled with difficult patterns, unpicked mistakes, changed my mind about color choices. Each stitch has pulled, dragged, helped me through bad times, good times, times of stress, worry and plenty. Each stitch has blessed me ten times over as I’ve learned patience, determination, tenacity, starting over, redoing, perfecting. The exact skills I need for writing.