Tag Archives: Rheumatoid Arthritis

A Ten Milligram Day

Yesterday I had one of those under-water-death-fatigue day. I treated it with an extra dose of strawberries and whipped cream. And while scarfing that down I wondered, if strawberries have anti-inflammatory properties and sugar exacerbates your symptoms, do they cancel each other out?

At the moment I didn’t care. It tasted so good, it made me forget that I was moving in slow-mo. And that it’s kinda hard to chase a toddler in slow-mo. But I figured out a solution to that, too. I don’t.

She loves being chased. It’s a game, but not to Abuela. At least not on these kind of days, so I just stand still and say, bye bye. She comes running back to me because the one thing she loves more than being chased is being included.

Bye, bye is what I also say to RA, but it too comes running back to me. Sometimes with a vengeance.

I am not an athlete, unless you count raising four kids, running a household and keeping up with a profession athleticism. Nor am I a warrior, though I like to think I have warrior blood in me.

photo (15)So I don’t know how to classify what happened to my right hand two years ago when it swelled up to the point of being useless for a month. Is it a sports injury or a war injury? But injured it is and every so often it swells up again to remind me.

I keep yearly photographic evidence of my hands. To see how they are holding up under duress. Today I can see the lumps and bumps between the metacarpals, the joints at the base of the fingers. The swelling is obvious.

The pain not so much.photo (13)

The dilemma this morning was how to untwist the cap and break the seal off  a new gallon jug of tea. I’d decided to up my Prednisone from the daily 2.5 to 10 mg. A veritable shot in arm, you might say.

But first I had to grip that sucker and twist for all my hand is worth, today. I can tell you it hurt like a **** but I am nothing if not persistent. It took three attempts that left me with the reddened imprint of the cap on my palm.

photo (12)

The Arthritis Foundation sent me a little gadget to open stuff. I remembered I’d packed it and ran and got it. Unfortunately,  it doesn’t work on caps this size.

photo (14)

 

 

I could have used this back in the day when I had to ask my nursing staff to open my bottles of lemonade. I hated the thought of having to ask for help, but RA makes you humble.

It also makes you stubborn and determined. I would have my glass of tea!

And I did.

Now to wait for the extra dose of Prednisone to do its job. I think I feel it working already. Or maybe it’s the hot water I ran over my hand for five minutes. Who would’ve thought washing dishes was therapeutic? Or maybe it’s the typing. Exercising my fingers goes a long way toward reducing the pain. Idleness is the bane.

photo (17)But there is no time for idleness now.

Not with these footsies to keep track of.

 

 

 

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The Change

Over the years my fingers have gone through what I call “The Change.”

It would start with a stabbing pain, like a needle being repeatedly inserted into a specific joint. I’d be working and go to do something and the pain would make me suck in my breath and wince internally. I would not let on how much it hurt. I didn’t like letting others know of my pain (something I plan to write about later, my misplaced stoicism).

In those moments, I would squeeze the offending knuckle with my other hand to make the pain stop. The pain didn’t prevent me from doing what I had to do, accomplishing all the fine motor functions required of me. But it did make me angry that I had to deal with it.

And the worst thing was that I had to deal with it over and over again. One sad knuckle at a time.

I knew what it was before a doctor confirmed it. It was Father Time knocking. It was the life-clock ticking. It was Osteoarthritis setting in.

Once the change is complete, the knuckle looks swollen, has less mobility and it doesn’t hurt. But while the change is happening, the pain is oh, so exquisite. I don’t know why OA  picked my hands to strike first, but it did, it has. And still is.

This time it’s attacking my poor little pinkie. For the second time. Can’t remember when it got the first knuckle, but it now is engaged once more. photo (78)

The pinkie ring I used to wear can no longer traverse the length of the finger to settle where it once belonged.

The knuckle is tender all the time and filing my fingernail was a study in stoicism. But I will do my nails, dammit! RA or OA, or RA and OA, will not restrict what I want to do.

Ouch!

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.

 

A Vignette

“You have very pretty hands,” she says.

I am busy signing a stack of papers. We are finally doing the deed, filing last year’s taxes.

“I have Rheumatoid Arthritis hands,” I say, taken aback by this unexpected comment. “RA loves your hands.”

“They are pretty,” the tax lady continues. “Women pay for nails like that.”

“She’s always had pretty hands,” my husband pipes in, stopping me in mid “thank you”. Now I’m really stunned; compliments I hear, but never about my hands.

I become self-conscious as I maneuver my fingers to keep the sheaf of papers flipped to one side so I can sign and date the various documents. I’m just glad to finally get this chore done. I’m exhausted from having spent hours over the previous days adding up dollars and cents gleaned from the ton of medical and pharmacy receipts accumulated. Truthfully to no avail, or to very little avail.

I’d put this off all year, filing for an extension. An extension that was rejected, the tax lady now informs us, making the day chock-full of surprises. My pen still, I stare at her in concern, what exactly does that mean? No matter, she says with a shrug. I mimic her shrug and go back to my signing.

“Did you have a problem? Were you not able to file before?”

“No,” I tell her, “I was angry and didn’t want to do it.”

My husband laughs. “There you go,” he says to her.

I ignore him.

“I was angry about my identity being stolen,” I say. “I wanted to wait.”

“Yes,” she commiserates and goes on to tell us horror stories of how hackers are able to capture your private information. It’s a terrible thing to have your identity stolen and it’s left to you to prove who you are when you’ve done nothing wrong.

During the year-long process it took to resolve this, I couldn’t help but wonder, Who am I? And who in the world wants to be me?

But the one question that burned through my mind was this: If you went through the trouble of stealing my identity, why didn’t you also steal my RA? You can have that for free, whoever you are. No questions asked, ever. You can rest assured I will never try to get that back.

The prolonged process of filing over, I stick my copies in my briefcase and stand up.

“Thank you for everything,” I say, “now I’m going to go have a drink.”

She stands up as well. “Where are you going to go have a drink?”

“I’m taking her to this steak place,” my husband tells her, as I start walking toward the exit.

I feel her eyes follow me out, perhaps because it’s only noon.

(Written Oct 12, 2012)

Thy Name is Fickle, Thy Way is Stealth

I keep forgetting I am ill. I forget it for days at a time. I run around at a speed reminiscent of my 30’s. I feel twenty years younger, which is a nice change of pace. I used to feel ancient, ready for death. Not anymore.

My illness brings me up short. Literally. It stops me cold and won’t let me forget for long. It is selfish and narcissistic.  It likes to be front and center; it doesn’t appreciate being shoved aside. It derives its satisfaction from reminding me of my limitations.

I give in to it. I have no choice.  It is not from defeat, but rather from strategy. I know how to beat it. It does not know how to beat me, for after a few days of rest, I arise from my bed ready to face life head on once more.

Rheumatoid Arthritis is a fickle disease. You never know from day to day how you will feel, how it will affect you. You don’t look sick. There are no outward signs of your illness, unless your joints are permanently twisted by it. The most obvious being your hands. It likes to attack your hands.

Time was when my hands were so stiff and swollen; I could not bend my fingers to grip the steering wheel of my car. Driving my daughter to school was agony. I would shake my hands at each stop light, as if that would shake off the pain. Or at the very least loosen them up, but it didn’t work. I drove with my palms.

I worry about my hands; I’ve always liked my hands. As I said to my first rheumatologist, when he told me I had a “good case of arthritis” in my hands, “I need my hands.” His curt reply was, “Everybody does.”

I know everybody does; I was merely reaching out for help. It wasn’t forthcoming. He almost let me die. He left me untreated long enough for fluid to collect around my heart and lungs, compressing them. I should bill him for my hospital stay.

That’s another thing about RA. It assaults your whole body. The “arthritis” in its name is misleading. It doesn’t differentiate between joints and organs.  Any site will do for its malevolence.

You are supposed to be wary, not invite it in. You walk a high wire, making sure you don’t overdo in order to maintain your balance, your equilibrium. And when there is no choice, when you know you will be stressed, you need to block some time off to rest and recoup. And that is not just hearsay!

I am reminded of that time and again. The resulting lethargy is a weight that inundates you, making it hard to think, hard to move, hard to breathe. You are surrounded by a fog of pain. Putting a simple meal together tests your limits. The FATIGUE is so pervasive and overwhelming you think of it in capital letters.

Tai Chi helps me combat my illness. My present rheumatologist wants me to practice it every day. In an ironic twist, it is Tai Chi that made my illness lunge forward and knock me down this time. For I became so involved with our Branch and the preparations for our 20th anniversary celebration this past Saturday, that I wore myself down to a confrontation with RA.

And RA always wins.

For the moment.

RA can stop me forever, but while I still live it can’t stop me completely. It can’t stop me from writing or composing my article for our Tai Chi newsletter. Tapping on the keyboard is a great exercise for my hands. It keeps my fingers strong and supple. I have my grip back and I mean to keep it. I need it to seize RA by the neck. And never let go.

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!

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?

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.