Monthly Archives: March 2012

Hunting and Gathering

I’m gleaning, in search of a diet. There’s got to be a way to beat this thing. Or at least, beat it down for a while. Just a little while. I find that Rheumatoid Arthritis can reduce your life span. I’m OK with that. I’m not out for more years. I just want the years I got left to count. To count for something.

I would rather be productive than just take up space. I don’t want to be a burden, on anyone. I would prefer pain to that. I know that is not my choice to make, but I can at least make my wishes known. And I have.

So, I sped read a book today, all about using diet to fight autoimmune diseases, one of which is RA. That is an ironic word, autoimmune. A fight against yourself. Even if you win, you lose.

It was good reading and led me to a list of my favorite foods. How lucky is that? I crave fruit and that is tops on the list. I could live on fruits and vegetables for the rest of my life. However long that may be.

Tomorrow I will shop with a new shopping list in hand. Into the cart will go apples, apricots and cherries, which I love. I can have all citrus and sugar, maybe I’ll start drinking fresh lemonade along with orange juice. I can still have my tea, though; can’t face my day without my tea.

Peaches, pears and plums, oh my! And lo and behold, alcohol is allowed. Won’t have to give up my occasional glass of Frangelico. It’s something to look forward to; I hide the bottle in my office. It’s sweet and tempting.

Turkey and beef are included, along with various fish. My vegetables, on the other hand, are reduced to carrots, celery and lettuce. Oh well, I will make do.

It is a three tiered diet. Chocolate, what I call my medicine, is on the second tier. I have to wait till I feel better before I move on to the second tier foods. So I cheated, had my last piece of chocolate as I write this.

I will say goodbye to chocolate as long as I can say goodbye to this hacking cough. Let go of my lungs, RA! You can’t have them.

Not yet.

Transition

It’s amazing what a difference a few days can make. Sometimes you are lucky enough to reach a point in your life where you think things will always be the way they are. And if they are not, it is only because they got better. You become complacent and accepting. You allow yourself to get comfortable with what is your now. You throw caution to the winds and laugh in the face of your existence.

And then, you are brought up short.

You have made no plans for things to get worse. You have no reserves to face the negative and you are left breathless as you face that painful awakening. When you realize that something you grew to take for granted is gone from you. When you discover that warmth was fleeting, like the bloom of a flower and no longer there. You are thrown into a tumult. Such are the true colors of this thing called life.

I find that RA mimics my life. The roller coaster that is my life. The upswings are short but thrilling. The downhills long and arduous. When you are on the way up, you can’t look down. Maybe that’s what makes them seem like they will last forever. The downside is out of sight, and worse, you refuse to even consider it. You choose instead to revel in the moment.

I suppose that is how life is meant to be lived. Otherwise, how could we face the sun each morning if we knew it would only bring sorrow and darkness. But, the light is merciful, if we let it.

After four days of steroids, my hand is almost back to normal. Almost. I call upon it and it is there for me. It is not what robs me of sleep this night. I give thanks for that, while I wish there was a magic candy for what truly ails me.

Alas, there is not.

The Crook of a Crooked Finger

So, Rheumatoid Arthritis rears its ugly head again. I knew it, deep down inside. I can feel when it’s stalking me. And it has been for weeks now. My right hand has been basically useless. I can type with nine fingers, but holding a pen in that hand, Aaiiyyy!

My rheumatologist says, “It’s incredible the disability RA can cause. You can have several joints affected with Osteoarthritis and still function, but RA can knock you down with only one joint being affected.”

Oh, so very true.

Still my heart sank at the thought of it being RA. I’d been doing so well.

“You sure it’s RA?” I asked. “Even if it’s unilateral?” RA usually attacks both sides of the body equally. It is its well-known calling card.

He laughed and said, “Just wait.”

I laughed with him and said, “I don’t want to.”

“What we need to do is start Prednisone,” he said.

“Yes,” I said, looking up at him as I lay on the exam table. “That’s what I want. Some of that candy.”

He laughed again as he examined my joints, bending my arms and legs every which way. No problem there, yet.

I’d first been seen by the Physician’s Assistant, as is the usual routine for my rheumatology visits.  He and the rheumatologist are like an extension of my family by now. He tried to examine my hand, but I held it out of his reach. I was afraid to let him, or anyone, touch it.

“It might be the tendon that’s inflamed,” the PA said. Trigger Finger, he called it. “He might give you a shot,” he went on.

With that, I placed my hand in his and he very gently manipulated my index finger. It could bend at the second joint, but not at the third, which joins the finger to the hand. He turned my hand over and pressed on my palm. I tensed up, but there was no pain.

“When you make a fist, does it hurt?” he asked, making a fist of his own hand.

“I can’t make a fist,” I told him and flexed my fingers, minus one.

“You might get a shot,” he repeated.

“And what will that do?” I snapped. “Give me 48 hours of relief?”

He shrugged and left me with the dreaded vision of a needle in my hand. I tried to relax and read while I waited for the doctor. I made up my mind I would do what I had to do to stop this pain. I couldn’t bear it anymore and there are so many things I need to do, like finish the quilts I have pending.

The doctor came in happy and upbeat as usual. He didn’t even try to touch my hand, one look sufficed, and there was no talk of needles. After reviewing his notes from my last visit and my lab values, he bade me step up on the exam table.

“We need to go up on your Methotrexate,” he said, once I was back sitting across from him. “It’s trial and error, you know.”

“I know,” I said. I’d been so happy to go down to one 2.5 milligram weekly pill and looking forward to one day taking none. Now I could kiss that dream goodbye.

“We’ll go to 10 mg and then we’ll work back down to 5 mg. You were doing fine with 5 mg.”

And I had been. It was a valiant effort to try to get off that drug, but I must face facts. There is no end to this disease and no end to the vigilance required.

“Now I will write you a prescription for that candy,” he said with a smile. “You need to have this on hand always.”

I smiled back. You can bet your bottom dollar I will keep that handy. No more three consecutive weeks of suffering for me. I’ve got things to do!!!

My Hands, My Hands

You are stealthy,
You stalk me,
My nemesis, you
I fear no one,
But, I fear you
I am helpless
I cry before you
Against my will
You have no pity
With your attack
Binding my hands,
With your presence
My hands, my hands

I wrote this poem back in July of 2011. In October, I took a picture of my hand. My left hand, as I am right handed; they looked the same at the time. My goal was to collect evidence once a year and keep a visual record of their appearance. This way, I could keep track of my RA. Not that I want to claim or own RA, but that is a choice I was not given.

I had a pretty good rest of the year. I felt better overall. More limber. I became more involved with my Tai Chi organization. Attending several classes a week and volunteering to write for and edit their newsletter. It offered me an outlet and a chance to make more friends.

In November, I saw my rheumatologist and almost fell off my chair when it was revealed that my CRP was three. Three! This main measure of inflammation, which is the bane of RA, was normal. I could not believe it. My blood levels had not been normal since 2004, when I was first diagnosed with RA.

There is no way to describe how I felt. I’d been given a gift. A gift from above. I drove home in a daze, the sun seemed brighter, the sky bluer, the palm trees more beautiful. Even the heavy Miami traffic seemed lighter and I was driving at rush hour. Traveling at 10 miles an hour, when I could move, just helped prolong my jubilation. I could not wait to tell the people who mattered to me, who cared about me.

When I saw the doctor next in January, I noticed he had not included a CRP level in my usual labs. I’d been looking forward to seeing if my numbers had held steady. But, I was feeling great. I’d thrown myself into quilting, having made three quilts in less than three months. My hands could handle all those fine motor skills. Yes, my fingers could be a little stiff in the morning, but it was not every morning. I marveled at that. It gave me hope.

The doctor asked how I felt about decreasing my Methotrexate dose once again; this is a chemotherapy drug used to combat Rheumatoid Arthritis. He smiled at me as I almost danced to the checkout desk. That meant I’d be going down to one pill a week. One! Down from the maximum dose of ten pills or 25 milligrams, which I’d been started on seven long years before. Now, I was looking at the next step, none. I would be left solely on vitamins and a daily anti-inflammatory. I could not contain my exhilaration at my near victory over this scourge.

And then came February. I was busy working on my fourth quilt. My dragon quilt for our Tai Chi Chinese New Year’s party had been a hit. It was raffled and won by a member of the Branch Council. She decided to donate it for display at the center. I brought it home to add a sleeve to the back of it for hanging. This was something that required handwork.

I put it aside for a bit. I wanted a break from it. A week, I told myself, and then I’ll do it. I concentrated on the next quilt, to be named Aloha Sunrise, for a sister-in-law who loves Hawaii and went to school there. I’d special ordered the fabrics from Hawaii itself.

I machine quilted half of it and the next day my right hand was hurting, I blamed it on wrestling with the quilt as I maneuvered it through the machine. I gave my hand a day of rest and then resolutely finished the rest of it. After that, my hand really complained. I hung up the quilt and decided to give it a good long rest,

That was over two weeks ago; my hand is still angry with me. It is quite swollen and painful. I am limited as to what I can do with it. Thinking it was overuse, I not only stopped quilting, I stopped doing pretty much everything except writing. Yesterday, my left hand decided to join the bandwagon. And that is a unique sign of RA. You get the double whammy, bilateral pain, insult to injury.

I’m hoping that it is coincidence. That my lucky numbers of one and three do not add up to thirteen. A number symbolic of bad luck. I see my doctor again in nine days and we shall see not only what transpires in those nine days I must wait, but what my numbers will be like then. Meanwhile, I probably should consider buying stock in the pharmaceutical company that manufactures my over the counter pain pills.