Monthly Archives: September 2016

A Revelation

handwritingI’ve been cleaning out my office, getting rid of old papers and transcribing some of the hundreds of handwritten pages I had stored away into my word processor. Writing has always been my catharsis, my therapy. And I’ve come to realize just how much as I go through the stack of pages and numerous journals.

Reading these pages have brought back memories, and I suppose I could also say, have wrung back memories as well. Sometimes it hurts to remember. Sometimes remembering brings back the pain, emotional and physical.

I have always known that I’d had RA for some time before I was officially diagnosed in 2004. I knew I’d been sick, tired, listless, and pain-ridden for several years before my current rheumatologist finally produced that Aha! moment, when I finally knew what I was up against. Prior to that moment of revelation,  I’d blamed it all on being a busy mom at home and a busy nurse at work.

But my assumption was that it had been only a couple of years. It couldn’t have gone on for more than that without a proper diagnosis, could it? Without my searching for and demanding an answer as to what ailed me.

Imagine my surprise when I found a letter I’d written to my husband who was out at sea in 1995. By the looks of it, I never mailed it. I probably meant to, but was so busy I forgot. Or maybe I changed my mind and decided not to burden him with my tale of woe. More than likely, I felt so much better after pouring out my angst onto the paper that I didn’t need to.

What I wrote astounded me in that apparently, I’d had RA back then. I had it and didn’t know it. And neither did my doctors because when I started the letter I was sitting in the internist’s waiting room, waiting to find out my lab results regarding my “inflammatory process.” Waiting to find out what was wrong with me. In it I write:

I tried going off my Prednisone. I hate being on steroids but my hands became very painful so I went back on it. But my right hand is worse, My grip is weak because it hurts when I try to grip things like when wringing the mop. Yesterday, I met a new doctor at work and he shook my hand. To me, it seemed so hard, I saw stars and it hurt for hours. . . .  My hands getting worse is very depressing.

I go on to describe a nightmare I had about something drastic happening to my left hand. I will not subject you to the details. Suffice to say, it was so horrible that it yanked me terrified out of my sleep and I could not go back to sleep for the rest of that night.

It just goes to show how RA can affect our subconscious, as well as our body. And unless I come across other writings, that describe my symptoms so accurately, from before the summer of ’95, it would appear that I have had RA not for twelve or so years, but for at least twenty-one.

In my last post, I mentioned how my lab numbers are now normal, after a supposed twelve-year span. But with this new/old information, I’m wondering if perhaps, like my kids, RA has reached its maturity and has moved away.

One can only hope.

BTW, my left hand is just fine. So far.

hand

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Dancing In My Happy Place

When you arise in the morning think of what a precious privilege it is to be alive, to breathe, to think, to enjoy, to love — Marcus Aurelius

I shall celebrate.

For the moment.

Had my rheumy check-up yesterday. Hadn’t been there in four months. I’d anticipated his incredulity when I told him what I’d been busy doing this summer.

It was not the usual summer, not by a heartbeat. But we made it through, almost. In nine days it will be fall. Or autumn, if you prefer. And summer will be behind us. My husband is doing cardiac rehab, working out and lifting weights, with a portable heart monitor weighing him down while he does it, mind you. He complains they go too easy on him. He stopped requiring dialysis weeks ago and the dialysis catheter was finally pulled last week. He’s driving and back at work.

I doubted that this day would come. I knew too much. I read the cardiologist all too well. His eyes shared with me what his words would not. And because I was also weighed down, albeit not with a temporary portable monitor, but with a permanent dread and a constant worry, I doubted. And I wondered, as I stumbled through my never-ending days, when my own collapse would come.

I’d taken precautions of course. When you have RA as your constant companion you cannot ever go without protection. I fortified myself by increasing my daily dose of Prednisone by an extra 4 milligrams on The Day After, as it will be forever known in my mind. I had already made the decision to stay on 1 mg forevermore. I want quality not quantity, I’d told my rheumy. He understood perfectly; he deals with the demon himself.

And so to forestall the demon rising and knocking me down when I could least afford it, I upped my Pred. That gave me some peace of mind, but still I waited and watched and wondered every morning when I took my dose. Would today be the day? Was it there? Closing in on me? Lurking?

A couple of weeks ago I caught a cold and felt like poop and I thought this is it, down I go. Thankfully, it happened after he’d been given the green light to drive. How’s that for lucky! I could give in to my cough and my sniffles and my lethargy as much as I pleased. And that I did, for two whole weeks as it turned into some sort of viral bronchitis.

But eventually, it went on its way and it came time to draw my labs for my upcoming rheumy visit. I was curious as to what the results would show. How bad would they look? I visualized the numbers based on the previous ones when there’d been no life or death crisis to live through. Well, yesterday I found out how they look.

They look normal.

Every one.

I haven’t been normal, well at least in this way, for twelve years. Twelve long years.

I don’t know why now, and I won’t ask. I’d already started the weaning process of saying goodbye to the extra Prednisone sloooooowly. My rheumy agreed and slowed it down even more. That’s OK. I can do slower. I see him again in December and by then I’ll be back down to the 1 mg dose, which I’d vowed to continue indefinitely.

Time will tell, as it does with all things. For now I’m to continue with the 22.5 mg of Methotrexate weekly. He’s so cautious he wouldn’t let me decrease my dose, not even by one tiny pill. I don’t want to change more than one thing at once, he said. All right then. I can take it. Literally.

So I shall rise above my disappointment regarding that and dance in my happy place.

For just a little bit.

And then, I will resume my plans to go see my precious baby grandson. A trip that was delayed by the events of this summer. I saw him born last fall and God willing I will see my beautiful boy this coming fall when he turns one.

 

Proof that life goes on.

Proof that life goes on.