Tag Archives: pain

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 3rd 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.

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?

shingles

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.

smile

My best medicine. A loving smile from my cutie.

Knock on Wood

prednisone

 

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.

 

Double Drat

A few days ago, I woke up and hit the ground running as I usually do. I don’t mean to imply it was at the crack of dawn. I’m a night owl, sometimes up till 3 a.m. when I get involved with whatever I’m reading, writing or studying. After my “morning” ablutions, I stuck my feet in my sandals and proceeded to walk out of my room.

My brain was aswirl with all the deadlines I had pending, finish writing an exam, critique an article, plan a Chinese New Year‘s quilt and finish a Christmas quilt that was promised, ye gods! for Christmas. As I walked out of my room, there was pain in my right foot. But it didn’t really register. The pain was like the squeak of a mouse clamoring to make itself heard above the roar of lions and tigers and bears, oh my.

It wasn’t until a few hours later when I got out of my car and gave that first step to cross the parking lot that the pain shot high enough to solidify in my brain. Surprised, I immediately began to favor my right foot as my nursing assessment skills automatically kicked in.

It couldn’t be my shoes. I’d just been bragging to my husband how comfortable they were. “Most shoes begin to bother me after an hour or so,” I’d said to him. “But these, I can wear all day long.”

“They’re Eccos,” he’d said, as if that settled the matter.

The day before I’d been dancing and jumping around the living room to my favorite reggaeton music. Dancing is one of my preferred methods of exercise. And since I had my granddaughter with me it doubled the fun. My feet were fine while I gyrated barefoot for almost an hour.

What could it be, I wondered? How did I hurt my foot and not know it? How was it that the feather-light suede strap across my foot was suddenly intolerable? As I limped up and down the grocery aisles it four-letter-word hit me. Neuroma! But no, it couldn’t be!

Back home, I managed to unload the car while dodging my demanding 17-year-old cat, Tigress. She can be so annoying when she wants something, wrapping herself around your feet. Once done, I kicked off my sandals and pressed down on the top of my foot below my third and fourth toes. And zing! An exquisitely painful electrical impulse shot forward and the side of the toes facing each other went numb.

It had to be another case of Morton’s Neuroma. I’d suffered from that many moons ago. I knew the drill, but even so I looked it up. One treatment is administering cortisone shots, which is how I’d been treated. The other was surgery. No, thanks.

Me, being me, I decided to up my Prednisone dose. Do a hit and run like my rheumatologist suggested, take a bolus dose and then wean down, all within six days. “It’s easy with you,” he’d said, smiling. “Cause you know what you’re doing.”

Yeah, a little ignorance could bring some much needed bliss my way.

I really, really don’t want to go see my podiatrist again. Last time I saw him was eighteen months ago when he had to cut away an ingrown toenail. I’d spent the year exercising my brains out and since my left foot twists in a little, it can make my second toe lie up against and partly under my big toe with continued stress. I didn’t know the nail was going to end up forcibly embedded, else I would have eased up on my activities.

I’m still smarting from the shot he gave me to numb my foot prior to taking what looked like a pair of pliers to it. It hurt so bad, I called a friend. But, after six or seven follow-up visits, he patted my foot and said, “That’s it. You’re all cured now.”

“You mean the relationship is over?”

“Yes,” he said, still sitting by my feet. “It’s over.” Then we both laughed.

Believe me, I never wanted a relationship to be over so badly. And now it looks like I might have to set up another date(s). I’m not at all interested in receiving his “caresses.” They’re delivered at the end of a needle while I lie in a pseudo dentist chair.

Double drat on that!

Unbidden

You come to me
unbidden
Searing my body
Scorching my consciousness

I am held captive,
helpless against you
You are an insidious layer,
burrowing under my skin

I sense your blistering touch
Every nerve fiber cries out
Synapses fire and are on fire

The lightest touch makes me shiver
The merest movement makes me quiver
I lie languid, letting you overpower me
I am yours, you devour me

An exquisite torture
that travels down my body
inch by inch
cell by cell

There is no escape
There is no respite
All I can do is lie in wait

In wait
for you to leave
And never return
For you to cease and desist
That is my unfulfilled wish
Never to feel you again
Never have you touch me

I refuse your insolent caress
I will not let you have me!
I will not let you have me!
I will banish you
I will cast you out
Like the scourge that you are

I SPURN YOU!

You
the excruciating
unrelenting
unforgiving
pain
of
Rheumatoid Arthritis

First posted under my pseudonym soledadpaz on March 14, 2011

http://www.fanstory.com/soledadpaz