Monthly Archives: July 2011

I have RA, but RA doesn’t have me

Fingers

Image via Wikipedia

I woke up this morning, thinking. I do that a lot. Both wake up  and think! I consider myself lucky; I have the ability to do both. My hands are the first things that enter my consciousness. Can I move them without pain, can I flex my fingers normally? I hold hands with myself. I exercise and manipulate my fingers, get them to loosen up. It takes a few minutes, sometimes more than a few minutes.

This is a daily ritual for me and I’m sure for many RA sufferers, but this morning my hands took second place. I had something more compelling on my mind. Writing. Words. Lots of words. 15, 000 glorious words.

Tapping on my keyboard is a good workout for my fingers, but more importantly it is a good workout for my brain. Writing is therapy for me. It is a creative outlet. Writing about my illness helps. I find that if I personify it, it is easier to deal with. I can face my enemy and laugh in its face. I am the Black Knight who, though armless, refuses to give up the fight, “It’s just a flesh wound!” (Monty Python and the Holy Grail, 1975)

Yes, RA, you are just a flesh wound to me. You may stalk me while I sleep, but you cannot hold me captive for long. I slither from your insidious grasp with morning’s first light. And I hold you at bay all through the day. You cannot keep me from doing what I want to do.

And what I want to do is write those 15,000 words, complete my work in progress. I will concentrate on exercising my vocabulary as well as my fingers. I will throw myself into my work and let it suffuse my mind and spirit. I will go where you can’t reach me, RA, for my novella is not about you.

I may have you, but you don’t have me!

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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

Dying and Dyeing

There should have been nothing but salt left in my stead. As in the episode of Star Trek, where a ship’s crew vanishes and the only proof that they ever  existed is in their discarded clothing and a powdery white substance. It seemed that this invader, that had as yet to be formally introduced to me, was eating away at my watery essence, leaving behind only a crystallized entity.

Ironically, that is the opposite of what Rheumatoid Arthritis does. It’s major manifestation is an accumulation of fluid. Inflammation. Of the joints and sometimes around your viscera. This foreign liquid substance becomes your mortal enemy, crushing your life-giving cells.

And that is literally what was happening to me. RA was crushing my lungs, so I could not breathe, squeezing my heart so it could not beat. The ER staff gave me baby aspirin after the Nitroglycerin, treating a possible heart attack. They pushed Pepcid into my vein, treating a possible severe GI upset. They pierced my radial artery to obtain blood for a blood gas. How much oxygen was there actually circulating in my system?

I submitted passively to all their treatments, all the punctures that they were required to make into my body. I hardly flinched when they placed the large-bore IV catheter in my hand. There was no telling what medications they would have to push into my veins, nor how fast. I answered their questions as best I could. The oxygen they were pumping into my nose was a healing crutch, though I was still pulling for air. It wasn’t that I couldn’t get enough in; it was that once drawn, there was nowhere to put it. That chamber had lost square footage.

Once I stabilized somewhat, the sleuthing began. Why was I displaying these symptoms. What was causing them? They prepared me for a heart scan. It involved injecting dye into my vein. A certain amount of time had to pass to allow it to reach my heart. I lay and watched the clock, relishing every minute as it ticked away. How lethal was this dye?  Had I so far survived the process going on in my body only to have an anaphylactic reaction to it?  Is that how I would die?

A Fog of Pain

I thought I was just tired. Raising three kids and managing a nursing unit can make anybody tired. But, then it became fatigue, lethargy. A fog settled around me. A fog of pain. It persisted; I would find myself at a stoplight and wonder how I got there. I told my teenager, I cannot drive your friends anymore. I was afraid, afraid of an accident. It became harder to function, I felt I was swimming, my fog had become a swamp.

I was seeing a doctor, a rheumatologist. Or so he called himself. He never deigned to touch me, I realized. How to examine my joints if he never touched me? I was sicker every time I saw him, yet he didn’t see it. “I am not a pill pusher,” he said to me in the open office area. I had no idea why he’d said that, I had not said anything and we had not talked about pills. I find that amazing. I am a registered nurse, yet in the initial darkness of my illness, I didn’t question.

One day my left hand was so swollen, I could not touch my thumb to any of my fingers. I could not close my hand. He took one look and ordered a cortisone shot be given to me. I could not unbutton the cuff of my sleeve. I could not grasp the button. The nurse did it for me and injected my arm. The next morning I bounded out of bed like it was twenty years in the past. It was a heady feeling, mobility. I could move! I could get out of bed without first planning how to minimize the pain of moving. It was wonderful! I became drunk on painless motion.

Of course, that only lasted a few days, the euphoria of pain-free motion slowly wore off as the pain and swelling returned. I went back to the doctor. He had x-rays taken of my hands and feet. “You have a pretty good case of arthritis in your hands,” he said. I thought about my sewing and quilting, my work as a nurse.

“I need my hands,” I said.

“Everybody does,” was his impatient response.

He recommended an over the counter anti-inflammatory and hand soaks. He said, “You have osteoarthritis and you might have Rheumatoid Arthritis, a double whammy.” Yet, he basically did nothing.

I went to see my primary physician. I requested a referral to a different rheumatologist. “He’s going to kill me,” I told him.

I had to wait two months to see the new rheumatologist. My condition deteriorated slowly. Two weeks before my appointment, I woke up feeling sick to my stomach. I had no energy, sitting up in bed was an effort. Something felt very wrong. I rested in the morning; I had to work that evening. Finally after lunchtime, I got up to shower, thinking that might make me feel better. I ran out of breath in the shower. The room spun around me. I gasped for air.

I managed to call my unit, I managed to form the words.”I can’t come in, I’m sick.” My chest felt in a vise; there was no room for oxygen, the harder I tried to breathe, the less air I got.  At the ER, they whisked me into the back. Within seconds there was an army of people around me, sticking needles into me, sticking Nitroglycerin under my tongue, sticking EKG leads onto my body, sticking a nasal cannula in my nose.

I watched it all as if it was happening to someone else. How was it possible that it was me on that gurney? I was used to being the one rendering care, not the one receiving it. There was silence amidst the cacophony. I had crossed to the other side.

Green Bananas

Why is there a picture of bananas on a blog about Rheumatoid Arthritis? Maybe because I am bananas to think anyone will read it.

Maybe it’s because nutrition is so very important in the management of any disease process. And it is of prime importance in the maintenance of a healthy body. Our bodies are made to run like well-oiled machines, but sometimes that oil pan springs a leak.

Maybe because to me, yellow is the color of hope. And the color of sunshine. The sunshine that brings welcome warmth to our aching joints and lights up our day, bringing us out of the darkness whose name is pain.

Yellow is also the color for caution. As we move from stoplight to stoplight in our lives we must proceed with caution. It is what rules the life of someone with RA. We must take care not to overdo, for that invites the pain.

We must also take care to DO. Exercise and motion keeps those joints fluid. True for any body, more so to a body with RA. Use it or lose it could not be more applicable.

As I use this forum to share, connect and inform about my disease, I look for the color green. For green means go. I want to go. Go on with my life, go on with my future, the best way I know how, for me and for those whom I love and love me.

And no, no green bananas for me.