Tag Archives: Recovery

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

The Man in my Vision

 

When I didn’t know if he was to live or die, he kept appearing to me.

Standing.

Not flat on his back in a hospital bed attached to alarming machinery, with snaking lines, twisted together like translucent spaghetti, connecting him to countless, beeping IV pumps. My brain could not accept. I was in a familiar place. A place I knew intimately. A place where one must act quickly, quickly.

I’d been there so many times. So many times.

But not in this way. Not in this way. Not when I could do nothing but sit. Sit and interpret all that was said. All that was not said. I heard those words the loudest. The ones not said.

And to muffle the sound of those unspoken words, the vision would come. I would see him standing in that way of his, one long leg forward, shoulders hunched in just a tad, shoulders wide from years of surfing. His hands by his side, one thumb caught in a pant’s pocket, the tilt of his head with that smile on his face, like he knew, he knew the sight he presented.

He would appear at all hours, day and night. When I least expected it, he’d be there. And I would compare the man in my vision to the man in the bed and my brain would recoil. No, that was not him. Not him. 

The him in the bed was unrecognizable. I didn’t know that person. I’d never met him before. He was a stranger, and yet, a stranger that belonged to me.

I didn’t know who the man in the bed would be when he woke up.

Or if he’d ever wake up.

If he’d ever stand.

Stand in that way.

Knowing who he was.

Who we were.

And so I welcomed the man, the man in my vision.

For he seemed to be there to deliver a message.

“I’m still in here.”

And that gave me peace.

 

 

The Long, Long Road

I thought I would have caved in by now, fallen in like a deflated souffle.

It’s been 25 days since our life radically changed in one split second, or perhaps it occurred over the course of many hours. Hard to tell, hard to know.

All I’m sure of is that the days we used to have are gone. Gone forever, or gone for a while, we don’t know.

His sister says to tell him, “Chin up.”

Oh, if it were only that simple. Simply a matter of will.

I worried about me. Once I stopped being consumed with worry about him, I remembered me. Twenty-four hours in, when I left the hospital for a shower and change, and a quick nap that never happened, I made the conscious decision to increase my prednisone.

I’d spent over a year weaning down, weaning off. And I did stop, for about a month, but then the old pains came knocking and I gave up. “I’m done,” I said to the nurse practitioner at my last rheumy visit. Done, done, done.

If a little prednisone is the difference between feeling good and feeling bad, then bring it on. I told her I was on one milligram, and would stay that way. She nodded, but I didn’t need anyone’s permission. My body, my life, my decision.

So that Sunday at home for the first time after his massive heart attack, after I knew that he’d made it through that first night, that first 24 hours, I told myself what to do to keep myself going.

I would increase my prednisone to five milligrams, five times what I was getting before. And I would stay on that dose indefinitely, for as long as it took, till my slow, self-plotted days resumed.

Right now my days are nonstop, nonstop, a whirlwind of medical appointments hither and tither. Nights that don’t include much sleep, or much rest. Nights that when I do sleep a little, I do so halfway, alert for any sound, any need.

And therefore, I find myself surprised that I’m feeling fine, physically. I am tired. I am exhausted at times, and I can’t think straight at other times, but that is normal. That is a normal reaction to such a crisis.     

As we proceed down this long and tortuous path toward recovery, I have to give thanks that at least one of us is feeling normal, and that so far I can still claim the fortitude to keep on traveling down that seemingly endless road.

This song keeps playing in my head, the mournful beat and the words:

You know I can’t let you slide through my hands

I watched you suffer, a dull, aching pain

Faith has been broken, tears must be cried

Let’s do some living, after we die

 

I Ain’t Got Time to Bleed

If you’ve ever seen the movie Predator, you are familiar with that line. Jesse Ventura is hit, bleeding, but he’s focused on taking out the alien predator so he’s got no time to bleed.

I feel the same way right about now. Only the blood I want to shed, but hold back, is not red, it’s clear. And comes from only one source, my eyes, and originates from only one site, my heart.

I don’t know when I’ll have time to do anything but move forward. When I will have time to stop, curl up in a ball and release all the pent-up emotions. I don’t know when that tomorrow will come, or what that tomorrow will bring.

Or perhaps, I do know. Perhaps I know too much. And therefore, my desire to “bleed.”

 

How Can You Mend a Broken Heart?

I’ve been off the grid for a while. It had been due to mundane, everyday reasons.

But now it’s because of my husband, I don’t even know how to say it. To write it, for writing it makes it real.

He is in the hospital. And that’s the good thing, that he’s in the hospital.

The planets aligned just right so that when his heart gave out, it did right in front of the paramedics.

He’d gone on a bike ride. No big deal, just for one hour this time, not the normal three or four. Just to the park ten minutes away, not the 50-mile ride he always does.

The kids were coming over for an early dinner, by a fluke all three of them. Our youngest, on a whim, came down from NYC for the weekend.

“I’ll be back,” he said.

He didn’t come back for seven days. Seven days where he rode the waves of full life support.

It’s been nine days since he went for that last bike ride and the journey to recovery has barely begun. The journey that we all embarked on when I answered the phone without thinking. Normally, I won’t answer unless I know who’s calling, but this time something made me pick up, even though I was in the midst of cooking and cleaning.

The journey that continued down that long, cold, endless ER corridor, my eyes drilling holes into the floor in front of me as I followed the tech who escorted me, afraid that if I looked up I would suddenly be confronted with a team in crisis moving in that synchronous, familiar ballet of saving a life.

This time with my own husband at the center of it. Lying there, helpless, colorless, and I feared, lifeless.

Hours and agonizing hours later, they came to me. They’d been successful in stabilizing him, enough to be moved to an ICU bed, enough to say he was still alive.

And he remains there, slowly, slowly moving along the slippery bonds that bind us to this precious earth.

Redondo Beach, California

Last summer at his beloved Redondo Beach, California, where he grew up surfing the waves.

Writing To You From Flare City

This is not a place I recommend you visit or aspire to be, but to drive that point home, perhaps I should take you on a virtual tour of its many destinations.

First there is Feverville. It’s a warm and cloying place where you can immerse yourself in the experience of a low grade temp.  A rise in temperature just high enough to make sure you are not left bereft of the accompanying chills. For what is a fever without those earth-rattling chills? Which reminds me, if you plan on coming here anyway, don’t forget to pack a sweater.

Immediately adjacent is Fatigue Island. This is not a location where you want to hang out indefinitely, believe me. You want to get out, the sooner the better, but there is no one else around to vote you off. And even if there was, time apparently moves at such a glacial pace that if you could muster up the energy to pack your bags, you would be doing so in such slow motion that it would be undetectable. Face it, once here, you are stuck for the duration.

Not too far away is Body Ache Development. It is called Development because no matter how many times you come by, there is always something new, something different going on. It’s an area that is filled with nooks and crannies where pain can take a hold. Rest assured, there is a special something here for every body, and for every part of that same body. Beginning at the narrow neck, it proceeds to a broader expanse called The Back. This is a wide area that can host lots of pain. And it does.

Then there are the byways, four of them, long corridors that can nurture little pockets of pain here and there. These are really dead ends for there is no jumping-off point. You can traverse them looking for a way out, but at the far and painful end you must needs make a U-turn. A U-turn that will take you back to a main component of this Complex:

Stomach Central. Here you can indulge in forbidden foods. Fried shrimp, French Fries, Coke, ice cream shakes and other sugary substances. They taste good and make you forget where you are for the moment that it takes to chew and swallow. They are classified as comfort foods only for that space of time, for once ingested they rebel, leaving you with remorse and regret as souvenirs.

None of these foodie temptations will get you home. There is no pain-free ticket to ride. No red shoes to smack together on hurting feet, no magic phrase to utter. There is only an intangible capsule called Time, and you must wait, desperately but patiently, to be ferried out and carried home.

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