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?