A Funny Thing Happened on the Way to My Grave

It was 2004 and calamity struck. In stages. It started the previous Christmas Eve. My doctor called me. Doctors don’t call you on Christmas Eve just to say hello. My daughter needed a biopsy, ASAP, he said. She was subsequently diagnosed with invasive thyroid cancer. Something we didn’t know until the second pathology report, and that necessitated two surgeries. Two weeks apart. The surgeon had tried to leave a smidgen of thyroid, so she wouldn’t be dependent on medication for the rest of her life. She was nineteen.

By April, we’d made it through radiation treatments, and then came May. I severed the tip of one finger trying to pry the stopper off the drainage hole of a large plastic planter, with a knife. My plants always bring me a sense of peace, working with them, or just communing with them. I felt the knife go through my finger as blood spurted. I grabbed a paper towel and jammed the finger end back on. It had already gone as white as the paper towel. The ER attending had been a plastic surgeon back in India. My finger survived intact, though for many years it was excruciatingly sensitive to touch. Nerves have a long memory.

Meanwhile, I was feeling weak, having generalized pain, along with localized pain to my joints. My stamina was decreasing rapidly, making me glad for my office job. I knew that my ICU days were a thing of the past; my body could no longer sustain the hectic pace. The rheumatologist treated me for arthritis, and though he did mention the possibility of RA, he did nothing to diagnose it or treat it. In July, while leaving his office after my final visit to him, my sister called. My father, who’d been in the hospital, had died.

I dreaded the three-hour trip back home. The necessity to change flights in Houston. The need to run from one terminal to another, carrying heavy luggage along with my heavy heart. I felt I was short-changing my father, thinking about myself instead of him. But, oh the pain! In my body, and in my soul.

Upon my return, I had my PCP refer me to another rheumatologist. “This man is going to kill me,” I said. The soonest I could get an appointment was for mid-October. I hoped to make it till then.

October 3^rd found me lying on an ER bed, in a scene straight from TV. I watched it all from above. Or maybe I only imagined seeing it, as I had been on the other side of that bed countless times.

It turned out not to be anything as obvious as the hammer-fall of a heart attack. No, it was something more insidious. Something that slithers toward you, with its own intrinsic ebb and flow. Something that can be innocuous or deadly. The bane of RA sufferers. Fluid.

With the passage of time, fluid had been collecting not only in my joints, but also around my heart and lungs. Till one day, I could no longer stand for the few minutes it took to shower, nor could I speak well enough to make myself understood.

The new rheumatologist’s first words, after hearing my history, made my eyes fill with even more fluid. “Don’t worry,” he said, placing his hand on my arm, “We’re going to find out what it is.”

“IT” turned out to be RA, and though he started to attack it aggressively, I continued to worsen. It had been allowed to grab a stranglehold on me, and it didn’t seem to want to let go.

I resigned my management position of the busy telephone triage department; I couldn’t keep up with all its intricacies. I remained part-time, but that did not help matters. Being tied to a desk made my hips ache so. Holding the phone to my ear while typing on a computer keyboard made my wrists and elbows scream with pain by the time my six-hour evening shift ended.

At night, I longed for the pain to subside just enough to let me sleep a little. And fearing that death was on the horizon, I retired. I had to conserve my dwindling physical and mental energies for my youngest child. It would be two more years before she went away to college. She needed me, and I needed to give her my last days.

But then, a funny thing happened on the way to my grave.

I began to get better.

How Can I Not Be?

I sense the sun before I see it. I know it’s morning but I don’t want to acknowledge it, not yet. Awareness slowly seeps into me, seemingly one cell at a time. Automatically, I brace for that familiar sensation. That burn, that unbidden fire.

I realize I’m lying on my side, that side. The fire is quiet, muted, muffled. Perhaps compressed out of existence between my weight and the mattress. Oh, if only.

There is movement beside me. I don’t turn and I don’t open my eyes. I stay still. Enjoying the quiet of my body along with the quiet of the morning. Footsteps pad out of my room.

Water gushes in the kitchen; teapot hits the ceramic stove top. I wait for its piercing whistle.

Soon, a spoon clinks round and round inside a cup. From my bed and behind my closed eyes, I can see the circling swirls of cream and sugar turning that fragrant black liquid into a beige concoction.

Footsteps return to my room.

“Wake up, sleepyhead.”

I hear the clunk of the coffee mug set down on the table, near my head.  The aroma is eye-opening. I inhale its scent as I carefully pull myself to a sitting position, testing, testing.

Before I can determine where it hurts, or if it hurts, a toasted bagel joins the steaming mugful.

“You all right, baby?”

How can I not be?

Woman, Interrupted

I have been remiss. I’ve been consumed with the fire at my side. In my side. It’s amazing how encompassing it has been. Everything was pushed aside. Shoved aside. There were no neurons left over to expend on all of my daily activities.

My reading slacked off, especially my on-screen reading. The fact that the screen would do a periodic disappearing act didn’t help. I am now so far behind with my emails, hundreds that have piled up in the interim. I don’t believe I will ever catch up.

There were the faithful emails from Elise, my Spanish Word of the Day lady. Some of the words would amaze me. I didn’t realize I knew them so that when I punched her email open on my cell phone, I would think, Aha! I am more fluent in my native tongue than I give myself credit for. It felt like a small victory.

The emails from my quilting site only served to underscore what the hundreds of cuts of fabric, neatly stacked on a wall of shelving in my office were saying to me. What about me? What about us? When will you give us your time? My Tai Chi instructor emailed, Can we have some of your creations for our Mother’s Day Raffle? I’ve yet to respond. Mother’s Day was just another day with shingles pain this year.

The writing blog posts are also stacked up neatly in my inbox, awaiting my time and attention as well. I didn’t want to read them with blurry eyes and blurry mind; that would in effect cancel out their very purpose, which is to help me finesse my craft. I look forward to digesting them, in small bites, the better to savor them.

And, of course, my personal writing was suspended. It wasn’t for lack of material, but for lack of dexterity. My fingers lost their place, lost their connection to the home keys on the keyboard. The keys that are the base from which they launch themselves across the span of the key layout. My brain saw one word and my fingers typed up a close facsimile of it; the relay was broken. Or merely interrupted. Whatever it was, it was infuriating.

Regardless, I persevered and completed the projects I had pending; deadlines wait for no man, or woman.  But, it was slow going and quite a strange experience. They say you never appreciate something until you lose it; that might be true. All I know is that my fingers are once again.dancing nimbly over this keyboard. The circuits are reconnected, soldered together through sheer willpower. The embers of shingles pain still burn, and I am being careful not to fan them into bright, lacerating flames.

On the Mend

Four weeks and counting. I must say it’s been an interesting four weeks. Filled with fire and steel. It’s amazing how exhausting constant, never-ending pain can be. Even my RA pain, as excruciating as that can be, did not last this long or keep me this down.

The surface of my bedside table became a bouquet of pill bottles. In different shapes and colors.  The pills themselves are colorful. My Elavil is pukey green. It’s supposed to mess with my brain and short-circuit the pain signals. It’s meant to derail the train tracks and send the pain-filled railroad cars off into oblivion.

Well, it’s not quite doing its job. Or at least, not as efficiently as it could.  My doctor said he would increase the strength. But, I don’t know that its side effects are worth the increase in dosage. Though, I can’t help but wonder what color that will come in.

Sleep has been my refuge. When I sleep I have no pain. Miraculously. But I can’t spend my life asleep, nor can I spend it taking narcotics for said pain. They made me dizzy, drowsy and ditsy. I’d forget what day it was; I’d forget what time it was; I’d forget what pill was next. I actually made myself a med sheet, or cheat sheet, so that I would know what was due when.

The worst side effect was having my computer screen fade out. For a nanosecond, I would be gazing at a big black hole. It was only a flash, just long enough for me to detect that void, but it was quite disturbing. This has stopped and since I stopped taking several meds at basically the same time, I don’t know which one was responsible. Or a more disturbing thought: maybe none were.

But regardless of the pain, the dizziness or the big black void, I managed to keep working. I had windows of time when my thoughts were clear, my pain dampened, and my computer screen consistently brightly lit. I gave all those good moments to the projects I was working on, and I advised everyone within “hearing” distance to get the vaccine if they could.

Unfortunately, I had to let my blogs and my blog reading languish.  Now I have a lot of catching up to do. And though shingles still demands attention, its cries are more muted and I can block its diminished fires for longer periods. I can’t extinguish them completely, only time can do that. Hopefully. But by the looks of things, I have turned the corner and am on the mend.

Inner Peace and Invisible Pain

I have survived over a week with shingles and I have to say it was not easy. After having four kids, and RA, I should have a high tolerance for pain, I would think. Apparently, I do not.

But then again, the above mentioned wasn’t nerve pain. That falls into a category all by its unique self. I call it the invisible pain.

The rash has subsided, gone to pink again, but the swelling persists. I have a lopsided belly and my hip area is exquisitely tender, yet hard to the touch. I had no idea there was so much swelling involved with shingles. And since it’s the right side of my belly that’s inflamed, I feared for my liver. After nine years of methotrexate, I should fear for my liver!

But, my doctor palpated and said it was fine, just inflammation. A word I’m all too familiar with. And because of its immunosuppression side effects, he took me off the mtx until further notice. Today, I should contact my rheumatologist and tell him about it. Maybe he wants to start something else.

I’ve hesitated to call him because I’m afraid he’ll want to see me and a visit to him is a three-hour sitting around marathon. I can’t sit right now, not for three freaking hours! But, perhaps we can speak on the phone.

I never thought something could make RA take a back seat, medically speaking, but hats off to shingles. The pain is akin to having a flaming torch applied to your side, while a thousand knives hack away at you by turns.

After twelve days, the temperature on that torch is somewhat diminished and the number of knives has decreased to the hundreds. The area they now concentrate on is thankfully smaller. Maybe that’s why the effect feels lessened.

Yet strangely, amidst all this, I feel inner peace. I am being tenderly cared for, dare I say even pampered and catered to. I’m receiving the type of medicine one can’t buy, and has no price. One whose value can never be quantified, and best of all, comes with no side effects.

Unless, you count love.

How Do You Spell Pain?

Pain spelled with angry red bumps.

So, life caused stress, which I believe triggered RA, which caused me to have to take a drug called Methotrexate, which then caused me to be immunosuppressed, which then left me vulnerable to come down with shingles.

I think I have that right. I might have missed a few steps. All I know is that yesterday, I reached the mountain peak of stress. The pain was out of this world. I spent it drugged up with Percocet. Kept to the every six hours dosage. When I was awake I could not think due to the pain. And to relieve the pain, I knocked myself out.

Which was good in a way. It relieved the stress of knowing my daughter is in Boston. Arrived right before this horrific event happened. Walked those streets right before. God help me.

I was sitting in my doctor’s exam room while all this was happening. Upon leaving, the young nurse engaged me in conversation, wanted some advice about pursuing her career. Talking to her made me forget the pain, but upon exiting the doctor’s office I heard my husband on the phone talking about Boston. I freaked, inside.

Rarely does my stoicism fail me, but my heart was pounding as it took two attempts to reach my daughter. I envisioned myself on a plane to Boston already.

Today, I have a new stressor. She is driving back to NYC with the rest of her things and no other company than her GPS. I tell myself that when I was 22, I was married with a baby. But, no matter what I tell myself, she is still my baby.

Thankfully, I think I have crested the mountain called Agony and am on the way down the other side. What started out as a dainty little row of pink dots has morphed into an angry, red, diffused eruption. It hurts and it hurts to look at it.

But, I know it doesn’t hurt as much as the people of Boston are hurting. My daughter spent four years there and I feel an attachment to that historic town. My heart goes out to all involved.

Maskerade

RA is such a handy little villain. So easy to blame for whatever feels wrong. If I’m tired, I blame RA. If I’m fatigued, I definitely blame RA. If my joints ache for any reason, it’s RA’s fault. If my hands are stiff, sore and swollen, well, we know why, don’t we?

So, this past week my hip hurt. Bad. Immediately, I thought bursitis. It’s back. Suck it up. It’s RA at work again. I downed some of my friend/nemesis, good ole Prednisone. 20 mg. Take that, RA.

But the next day, there was no improvement, rather it felt infinitesimally worse. How could that be? I downed another 20 mg. And what struck me as strange was that it did not hurt to walk. That did not jibe with bursitis, but I pushed that to the back of my mind and concentrated on the exquisite pain I felt just touching the skin around the right side of my pelvis.

I added the heating pad to my regimen, sleeping on it, exactly like you’re not supposed to do. I depended on its automatic shut-off. And anyhow, who was sleeping? 10 mg of Flexeril afforded me three hours tops. The pain was King!

Soon there were bags under my eyes from sleep deprivation and a funny little trail of pink dots over my hip. “I don’t like the looks of that,” said my husband. “Stop using that heating pad.”

But of course, I didn’t. It was palliative; it was a placebo for my pain. The dots got bigger and redder. But still I could walk without the slightest limp. How could it be bursitis?

Yesterday I caved. Went to the Urgent Care. My heart rate was 108, my BP was 160 over what I don’t remember. My systolic BP usually runs between 110 and 120, my heart rate 80 something.  Yep, I was in pain. In so much pain, I couldn’t even multiply 2.5 times 6 to tell the nurse what my weekly Methotrexate dose is. Me, who could calculate IV drips in my head couldn’t multiply simple numbers.

Later in the exam room, my husband verified that 2.5 x 6 was 15; I was on 15 mg of MTX. The doctor came in, did the normal drive-by history, then took one look at my hip and said, “Aha, you have shingles.”

Shingles!! (Insert four- letter word here!)

Well, blow me down. I’d never even seen a case of shingles in all my years of nursing, though I have read about it. Read about how painful it can be. And ironically, I just finished a course on pain management for my license renewal. How providential.

I was given a shot of Toradol along with some sympathy. The Toradol is for pain and inflammation, the sympathy was a bonus from the nurse. And then, I was sent home with a long list of prescriptions. The Percocet makes me sleepy and dizzy, so I’ve been catching up on my sleep.

But the Lidocaine patches, mercy me, what a blessing. They suck away the peripheral pain from all over my right side. I can touch now without causing that electrifying agony, and paradoxically, my sensation is returning. My skin had felt numb, yet on fire. Neuralgia is a funny thing.  So funny, it almost made me cry.

Now, I have to concede that RA is only indirectly involved in this little incident. The meds I take for it leave me immunosuppressed. But this taught me something. To not let RA mask what might be truly going on. I suffered for four days needlessly. I should have sought treatment sooner. I shouldn’t have waited and self-treated. This lesson was driven home quite piercingly.

Meanwhile, the nurse said I am contagious so I had to tell everybody to stay away for a week. I won’t have my little ray of sunshine this weekend.

My best medicine. A loving smile from my cutie.

Looking for Mr Goodflake

I conducted an experiment on myself. My main objective was to satisfy a childhood craving, and secondarily, to see if what I’d read was true, at least in my case.

Growing up, I never went hungry, though there wasn’t a lot to choose from in the cupboard or refrigerator. The one cereal we usually had on hand was corn flakes. Sometimes a bowl of cereal would be my breakfast, sometimes my dinner. With just a bit of milk, it hit the spot.

In my own kitchen, there lived a great assortment of cereals. Every kid had their own wish list, it seemed, though I still stuck to my favorite. But, as my nest was emptying so were the cupboards of that crunchy stuff. Soon, there was barely any cereal to be found in my home.

It was during this gradual exodus of children and foodstuffs that I became so ill I ended up having to give myself Humira injections with hands that couldn’t even close around a steering wheel. After several years of this, and seeing no improvement, I stopped. I decided I would accept the Methotrexate, and the Prednisone if needed. But, I would concentrate on exercise and I would study food.

I began keeping a notebook with lists of different foods and their benefits, or deficits, regarding inflammatory conditions. I learned that strawberries and chocolate were good for me and corn wasn’t. I avoided processed foods due to the corn syrup used in them, but my main reason for doing so was to control and maintain my weight. I still had the occasional popcorn at the movies, or the rare corn on the cob. Corn flakes, though, never entered my mind.

Then about two months ago, the craving hit. I ignored it until one day while walking through the grocery store, my cart made its way into the cereal aisle and stopped. I scanned the never-ending sea of cereal boxes looking for the corn flakes. I found them relegated to the bottom shelf; not even rating eye-level placement. I pondered for a while and then made my decision. A 12-ounce box was soon joined by a quart of 2% milk, another item that had been absent from my home for years.

After that first box, a second one followed. Instead of my usual bagel or a couple of scrambled eggs, I would shake some flakes into a bowl for breakfast. What could be easier? And if my husband wasn’t going to be home for dinner, well, there were the corn flakes. Why cook for just one?

Soon, my hands began to feel achy in the mornings. And then they began to be painful. They felt as if someone had pumped air beneath my skin. They didn’t look blown up yet, but they felt like it. Added to that, I felt stiff and achy in general.

I dumped the, by then, large-sized box of corn flakes into the trash. Within a week or so, my craving was gone and so were my overall achiness and swelling of the hands. I felt more energetic and my outlook brightened again. It always goes dark when pain and immobility first hits.

But now, I’m back to “normal” again, and I’m left wondering; was it the overdose of cornflakes?  Was it the newly added dairy to my diet? Or was it all merely coincidental with a flare? There are too many variables to come to a definite conclusion, but of one thing I’m sure: They sure did taste good.

Sweet Memories

I remember when I used to scour the stores looking for just the right basket. And when I found that, I went hunting for the just the right gift. What was it they were into at that particular time, in that particular year? Their whims changed with the wind and turned me into a weather vane, always pointing in a different direction.

It gave me untold pleasure to follow their beckoning. I would hide to arrange everything in their baskets just so. And then hide the baskets themselves until that Saturday night when I had to stay up and wait till they were sound asleep. Only then could I sneak into their rooms and place the basket where it would be the first thing their eyes would light upon come Easter morning.

Those days, those moments are now filed away in my memory banks. They are images of times past, marching before my eyes like clips of a movie collage. I needn’t worry anymore about constructing the perfect Easter morning surprise. Now they surprise me. Now they give to me. The most precious of all gifts.

 

My granddaughter Carmen (for some reason reminding me of Carmen Miranda).

Happy Easter everyone!

Knock on Wood

 

I have escaped the clutches of this little entity once again. The first time we met was after I ended up in the hospital with a pleural effusion and a pericardial effusion eight years ago. That’s how I was formally introduced to Rheumatoid Arthritis. It did not come calling lightly.

Instead of the chest tube I visualized upon hearing my diagnosis from the ER physician, I was put on a steroid regimen. A drug I’d administered countless times to my patients now became my lifeline. For a while. After several months, I successfully weaned off and stayed off, until this past year.

It started back in February of 2012. My right hand became so painful; I could barely run a brush through my hair. The pain soon had a stranglehold on my hand and on my day.

Forget cooking, forget housework, forget laundry. And worst of all, forget my bike. I couldn’t hold on to the handlebars with just one hand and remain steady as I pedaled. The endorphins my exercise produced were canceled out by the electric fire of pain. Anything that touched my hand sent an exquisite shooting pain up my arm. The joint at the end of my index finger was swollen into a ball and I had to use a brace to keep the finger immobilized.

Eating became a trial. I could barely hang on to a fork, and wielding a knife became an impossibility. It was the same with a pen. I think that hurt me the most, not just physically, but in my soul. Even so, I stubbornly wrote volumes of notes for a friend while I sat in the library. My ace-wrapped hand a blinding nest of pain, I held that pen and I wrote and I wrote. RA was not going to deprive me of even that.

I moved up my regular appointment a few weeks, but I still had to wait too many days before my rheumatologist could see me. I feared a cortisone injection was coming. I was afraid I’d wimp out at the sight of a needle going into my hand, though needles going into my arm every two months doesn’t seem to bother me.

But, he didn’t touch my hand and there was no mention of needle sticks. One glance sufficed. “It’s a wonder,” he said, “how RA can knock you down. Just one affected joint can immobilize you.”

Oh, yes.

Enter Prednisone. Ambrosia of the gods, it seemed. In short order, it gave me back my hand. Handed me back my life.  It became my crutch. I welcomed it and it moved in, lock, stock and barrel.

Oh, I tried to evict it after a while. Several times I started on my journey to displace it from my life. But then my hand would hurt and I’d run back to its protection, its shelter, its sanctuary. I was afraid of the pain, but I was terrified of my immobility.

Pain I could deal with. Loss of independence, I could not. So, I sought my fix. A literal fix, a repair. I turned and returned to the tiny white pill that had restored my life to me.

My attempts to sever that relationship continued, however. I did not like the dependence. I did not like how a bunch of little pills controlled me. The Methotrexate I accepted, the Prednisone galled me.

I began a hit and miss schedule. If I remembered, I took it. And many days I would conveniently remember to forget. Every morning, I’d flex my hand. There would be some tightness, some stiffness, some soreness, sometimes. Most days, my hand felt fine.

My labs have come back normal the last two visits. My CRP, sed rate, all the numbers fall where they should. The Prednisone stays in its bottle. And that stays in the medicine cabinet.  I give myself permission to hope that it also stays in the pharmacy.

Now, if you’ll excuse me, I’m going to go knock on wood.