first blog entry | Arthritis Information

August 15th, 2007, the receptionist from my new doctor's office in Texas called with the results of my blood test.

A few days earlier I had seen the nurse practitioner complaining of pain in my hand joints. Six days of strenuously scraping the brittle, flaking paint from the eaves and trim on my house had seen me wake one morning unable to close my right hand.

I assumed it was a product of the labor, and to some extent, it naturally was.

Truth be told, I had been experiencing pain my hands, wrists, and forearms for several months. I speculated it was the onset of arthritis, something both my mother and her mother suffer.

The doctor's office is billed as a Health and Wellness Center. They offer a holisitic approach to medicine, something apparently common in this part of Texas, not something I'd expect in such a conservative state.

Myself, I prefer the substantiation of science. I'm willing to court homeopathic remedies, but when it comes to it, I like a good longitudinal study behind my health.

In keeping with the holisitic approach, the office is cozy with a plush sofa, ample greenery, and a strange mix of quasi aristocratic architectural features applied to the interior of an aging, refurbished bungalow.

Herbs and supplements are neatly displayed near the receptionist's desk.

After being disappointed at my increased weight and having a slightly above normal blood pressure, I settled back with a magazine and awaited the nurse practitioner, Janet, a comforting and knowledgable woman who listened to my complaints with patience and attention.

I explained my conjecture of arthritis, and she suggested a blood test for rheumatoid arthritis. That's fine, I answered almost flippantly.

After all, I expected to have arthritis at some point considering that I'd inherited all my mother's ailments.

When the office called a few days later, the receptionist left a voice mail, which in retrospect seemed almost cruel, that I might have rheumatoid arthritis and should see a rheumatologist.

I made the appointment with the new doctor and turned to the computer for a bit of Googling.

Within minutes of setting fingers to keys, my stomach had turned on itself. Rheumatoid arthritis, I learned, is an incurable disease and entails a person's immune system going into overdrive and attacking the body. Largely, the joints are affected, and many sufferers also endure complications with organs such as the lungs and heart.

According to some numbers, something like 50% of RA patients are unable to work within ten years of diagnosis. Many endure extraordinary pain, while some benefit from the disease going into recession. All take potent drugs with a rainbow of side effects.

So I waited anxiously for my visit to the rheumatologist. To my dismay, my doctor's office had failed to forward the results of the blood test to the rheumatologist, so he could only make a diagnosis based on symptoms. He drew more blood for additional tests, which would have been required regardless, and took several x-rays.

Now I waited with even greater anxiety for my return appointment, when the data would be analyzed and my future somehow altered.

In the meantime, I quit almost all manual work on the house but continued to experience shooting pains in my fingers and toes and aching in my wrists and forearms. In fact, the pain steadily increased.

On September 10, my wife and I drove the short distance to the rheumatologist's office, carrying a notepad and paper.

Once there, I again suffered through having my weight measured. Almost 15 pounds more than what I was accustomed to in the past. Again, my blood pressure was slightly elevated, quite possibly due to anxiety.

The nurse, a large and dispassionate man, left us there where we waited but briefly for the doctor.

He entered with x-rays and a folder. A medical folder never meant so much before, but there it was, tucked neatly under his arm, filled with dreadful numbers.

We viewed the x-rays that showed the narrowing of my wrist joints and the slight curve already affecting both my index fingers, the shrinking gaps in my knuckles.

The numbers I dreaded were less ominous. They left a hole in the clouds. My prognosis, he explained, was of the less aggressive version of rheumatoid arthritis. With treatment, I could likely avoid the worst effects, perhaps suffer no complications with other organs, likely continue working and living as before. As I later told concerned friends and family, it's the good side of bad.

Even so, there is no choice about treatment. You accept it, or your joints seal up, the cartilage disappears, and chronic pain sets in. He explained the medicines available: one was a drug developed to treat malaria, and another was designed to fight cancer. More powerful drugs brought more side effects. If taking one in particular, he told us, "you cannot have a baby." His tone did not waver; this was not a suggestion but a declaration.

I selected one, forced to choose it myself. I took the one I knew my mother used, though she herself has not been diagnosed with rheumatoid arthritits. Hers is of another sort.

Last night, I took the prescription to the local Wal-Greens, waited for the young woman to navigate the maze of acquiring an ID number for my new insurance, and was told the medicine would be ready around 10:15.

Tomorrow morning, I told her. I'll pick it up tomorrow.

So this morning I drove there with a reluctant urgency, paid for the pills that shall hopefully slow the disease or perhaps send it into recession, and waited until I arrived early to work before I took it.

It looks like any other pill. An oval white tablet. Numbers on one side. A word on the other. And in between nothing and everything.

I expected to slip into ether when I took it, to have my vision double, to feel a wrench in my gut. But of course I did not. It slipped down my throat like so many other pills through the years, and I began my day.

davidvc0439338.8055092593David - the first full year after my diagnosis on my once-a-week chemo day (my rheumy told me to stop calling it that, to refer to it as a disease modifier) I, too, like you so achingly beautifully described, would have to take a deep breath and mentally steel myself to put 5, then 6 of these pills into me. This feeling has finally passed with some improvement after 9 months and realizing too that all my hair wouldn't immediately fall out or some other chemotherapy foolish thought. I wish you the best of luck and we are all here pulling for you. Hi David (my son's name), you describe so beautifully our introduction to this dreaded disease. I fear my son will inherit it from me.....Yes, the pills are scary, the disease is scary, but what choice do we have? NOne!, we all take all the stuff we are given, deal with the aftermath and of course start it all again the next week, or month or day, depending on what meds we are taking. You are so smart to grab this stuff by the throat, take the pills and move on with your life. congratulations on a positive attitude. Lynda

I've been thinking of you and wishing for the best. Glad to hear that you have so many test results, a thorough doctor, and a solid diagnosis. I have great faith that you will be just fine.

Thanks for sharing your beautiful thoughts, David.

Wow, David, great account of the last month for you. Write some more. You really feel the effects all this has had on you emotionally. You feel it, bigtime.

You really hit the nail on the head David. I too did not really know what this disease was until I was diagnosed and went on the internet. I have since learned to cry, laugh, grieve and hope. Everyday when I go to my pillbox and take the myriad of drugs that are needed to slow the progression of this disease I feel a little pitiful. Keep writing and hang in there. You will find great compassion, support and knowledge here at AI!!

Connie

David, you very eloquently described what all of us go through. You are fortunate to have your wife by your side and what seems so far, to have a good doctor. It makes all the difference in the world. I hope to see more of your posts (and even your wife's) in the future. Best of luck.

Deb

Thanks, all. It took me a month just to muster the courage to write something. I hope to maintain it.

I hope you do maintain it David. It was really nice and extremely cathartic to be able to read about what seemed in some ways like my own experience in your words.

Thanks,

Melly

David, what a beautifully written account of a frightening beginning to a frightening disease.

Your doctor sounds very forthright in his manner, but I would prefer that to one who says nothing of consequence and leaves you wondering. I think you are finally off to a decent start with your doctor.

Please continue writing. Like the others, I find it strangely comforting to read of your progress, written in a way we can feel.

Thank you!

Hugs and Goodnight! Nini

I too appreciate your writing. Thank you. I was wondering how is the short term memory problem? I have that problem but it's from a stroke I suffered at 50 ten years ago. Also, can I ask what meds you are taking. David, I am sorry that you are here with this miserable disease, but I could read your beautifully written message over and over again! Love it, love it! Please keep us posted with your progress David.

The short term memory seems to have been a product of the sleeplessness, which hasn't been a problem since this Trazodone. I'm not crazy about the drug, but I sure do enjoy sleep. And my memory.

My only medications are generic Plaquenil and meloxicam. I get to save the hard stuff for later.

David, I hope the Plaquinil will help. I did print this off, so that hubby and I can entertain a discussion about this. I am glad your wife is involved even if the grieving will extend to her. I hope the pain subsides for a while, but I am glad the your RD seems to be pretty aggressive.

September 26, 2007

Wristbrace

Last Saturday I could not find my wrist brace. A day of painting and working on the house had left my wrist with a dull, persistent ache. Too tired to muster the frantic search my mind wanted, I retired for the day after consuming my nightly Plaquenil.

My wrist brace is a flat, washed-out, bandage brown bought at Walgreens. Plastic, nylon, and elastic with stiff, aluminum splints running from the heel of my palm down my forearm, the wrist brace appears utterly anesthetic and medicinal.

It is the stuff of orthopedic patients, persons with carpal tunnel syndrome, and manual invalids everywhere. It is for people who lack either the vanity, taste, or will for anything different. It is all we have as a gauntlet against the stress and strain that leads to inflammation and pain.

I perused other wrist braces. Ace offers one that announces its wearer as a fit chap, someone who surely injured his wrist over-swinging a tennis racket, tumbling from a bike, or performing some other feat of thwarted athleticism. That aspect of my ego which recalls the swift joy of dashing down a basketball court or spinning through a round kick wanted that brace. It was a sleek brace with a deep blue fabric stitched in with red on the palm and across the back of the hand. It was closer to a cuff than a gauntlet.

Standing there in the well-lit aisles of our local CVS pharmacy, I sorted through an impoverished supply of wrist braces. I removed this sporty brace from its attractive package, seemingly designed with the athlete in mind: a strong, model’s hand ready to heal and return to the court. Not wanting a wrist brace that emitted an injured signal, I hoped this one would work, that it would fit and snugly secure my wrist against unnecessary stress and strain, perhaps reduce the dull, persistent ache that whispered the words arthritis, disease, rheumatoid throughout my day.

But it didn’t work. The brace’s poor fit coupled with the sense that it provided inadequate support overcame my hopeful vanity. My facial muscles slackened, my eyes narrowed. Without question, the medical gauntlet felt and fit better.

I left the well-lit, sterile aisles of CVS and returned to the well-lit, sterile aisles of Walgreens. I again shuffled through the few remaining boxes of braces, selected a medium brace for the right hand, and walked briskly to the cashier where I completed the purchase.

At this point, I had no formal diagnosis of RA. I had asked my nurse practitioner about using a wrist brace when I first approached her with complaints about paint and stiffness in my hands and wrists.

Should I wear a wrist brace? I asked.
It might help she said.
So I went searching for one.

Wearing the brace has meant different things to me. For instance, it introduces a mild social awkwardness when I should shake someone’s hand. A person across from me will hesitate, uncertain how to proceed, until I extend my hand and grasp theirs. The handshake is inevitably delicate and feminine, where one gingerly grips the fingers and not the palm. Still, I sometimes appreciate the delicacy that the brace imposes on a social situation as I’ve come to fear the crushing handshake that some testosterone-inspired men feel compelled to deliver.

Concerning my wrist brace and testosterone, that’s another issue. At times my fingers and wrists hurt enough that I realize I couldn’t protect myself if called upon to do so. I’m not a fearful man. I don’t walk the streets cringing at strangers or patting my wallet, but I suddenly feel incompetent, uncertain if my fist could overcome its pain to actually strike someone with sufficient force to fend them off. Could I protect my wife, myself, the children I still hope to have one day?

Moreover, the wrist brace is my own visible badge of debility, a sort of scarlet letter marking my shame at physical loss, my lost ability to do physically all that I desire, a reminder to me, and an announcement to others. That which is hidden inside my swollen and narrowing joints is evinced to the world. Part of me recoils from the inevitable questions that the wrist brace evokes in others. Oh, what did you do to your arm? they ask. Do I tell them the truth, entering into an uncomfortable discussion which so often ends in the person not knowing how to end what they began? Do I gloss over the problem and supply a half-truth that it’s sore from painting or some other task?

Other times, the puerile side of me, the side that is terrified by the uncontrollable aspect of an incurable disease, relishes the possible sympathy an explanation might arouse. My child surfaces and wants to look pitiful, but strong. It wants to see someone’s brow softened with concern and eyes slightly glistening. And the adult in me balks at that reaction. Shame compounds shame.

With children, however, I find myself actually enjoying the fabrication of elaborate responses. My current students are 6th graders, 11 years old mostly. I could tell them truth, but it would only confuse them. Our teacher has a disease? Will I get it? Is he going to die?

Instead, I find myself concocting wild answers.
What happened to your arm? they ask.
Shark bite. Long time ago.

What happened to your hand? (It’s inevitably, What happened to your…)
Dog bite. Rottweiler.

My favorite is this.
What happened to your arm, Mr. S?
Well, a couple of years ago, I had a really rough group of students. I paddled so many that my hand’s never been the same.

I look at them with dull, frank eyes, as if it’s nothing unusual. They usually return the look with half a smile, hoping to find in my expression the joke they sense but of which they are uncertain. Sometimes I deny that look, and they walk away not knowing what to say.

Children are wonderful for that sort of thing, I suppose. They allow us to slip into their own make-believe world, to submerge our problems into maintaining their safety and stability while forgoing our own.

David,

I have read your blogs and I sit here crying for you, for all of us. You outta write for a living.

Keep writing, you have a great talent. Do you teach english?

take care

Thanks. The wrist brace topic had been in the back of my head for a week or two now. Yes, I teach English, and actually, it's time for me to leave for work! Good day, all.

I love my wrist braces because they do bring me pain releif. But finding one that doesn't rub the huge wrist bone I have sticking out is a challange. (I don't have huge wrist actually they are too small but do have an odd bone that's too big).

My knee braces however I hate. Sure they help with the pain until the slip, or cut into your skin or it's too hot. :)

I was on the tail end of an eleven-hour drive from Texas to Tennessee. With nine hours of the trip behind me, my spirits had begun to rise as I contemplated seeing family and friends, not to mention the joy of extricating myself from the cramped cab of a 1995 Chevrolet S-10 pickup.

When the cell phone rang and displayed my wife's smiling image, I thought nothing of it and promptly answered the call. The rheumatologist's office had called, she said, and stated that I was to immediately discontinue the Plaquenil as my liver readings were too high.

It's easy to take a word like "immediately" for granted. We use and hear it often, but not until it's attached to something like one's liver does it become loaded with meaning. I felt as if I needed to stop the truck on the interstate, hurl the remaining pills far into the brush, and with nary a backwards glance, leap into the idling truck and leave the toxin far behind.

My wife had no further information for me, and after ending the call, I unfairly cursed her for not knowing more. I considered whether to call the doctor or not. I did not wish to further soil my now-muddied mood, but I also wanted more details and to learn what to do next now that the blood test from that Monday had shown discouraging results.

After sulking for twenty or so more minutes through the deltas of West Tennessee, I called the doctor's office and learned little other than my liver levels were too high and I would need to return for additional blood work.

So I did return, nineteen days later. The Thanksgiving holidays meant that I would not receive the results from this round of testing until the following week. The results were no better; one reading was even higher than before.

Such a reaction to Plaquenil is rare, the doctor told me, and of course, we do not know with certainty that my liver responded negatively to the Plaquenil. Some other befuddling factor could be at play.

While I often drink beer on the weekends, my alcohol consumption seems too light for such a reaction, especially so sudden as previous blood tests were normal. Perhaps the Meloxicam, though I had been taking it for more than two months prior to my diagnosis of RA with no apparent ill effects.

After this latest test, the nurse practioner told me she would order additional tests using the same blood and to wait for those results. Once again, the office called and left information with my wife, this time to remain off of the Plaquenil and wait two more weeks for results.

Meanwhile, the aches and wincing pains that had subsided somewhat have returned somewhat, at times more vigorously than before, invisible vices on my knuckles or goblin stings in my right foot or left elbow. Accompanying the pain is the nagging fatigue that can leave me inert on the sofa after coming home from work, too tired to cook or grade papers, ready to sleep one or two hours earlier than usual, unable to awake when I would. All sagging eyelids and shallow breathing, I fight the urge to sleep many afternoons.

So this has been my routine for almost six weeks now. Draw blood, await results, frown upon results, wait, draw more blood, and continue.

I called today to schedule another appointment, for next Friday this time. I am surprised that the receptionist knows me already as I'm still a fairly new patient. Most would say that I should welcome such familiarity, that it adds a personal touch, but at times I think I would prefer the anonymity of the waiting room or receptionist's call, to remain just outside the focus of these needles and doctor's instruments, beyond the vials of blood and Band-Aids.

As it stands, though, and almost certainly always will, I follow the doctor's orders, offer up my veins, and hope that something has changed.

Here's to hoping something has indeed changed.

Please let us know the outcome of your test. We care.

And please continue writing. You capture your experiences (which are the experiences of so many) with eloquence. Your words are so evocative.

David.... I'm sitting here in tears as I read what you have so eloquently put into words: emotion. I can actually feel what you're going through. It breaks my heart and is all too familiar at the same time. Despair, anxiety, uncertainty, aggravation, pain, both physical and emotional - it's all there. Thank you so much for sharing this with us and please continue writing. I'm currently reading Hemingway's 'A Moveable Feast' and your writing style reminds me a lot of his. You are extraordinary. Thank you for sharing such a vunerable part of yourself with us.

I hope you have a superfantastic and extra comfortable evening!

David, your words eloquently reflect what many of us are experiencing in our daily battle with RA.

I'm sorry to hear that Plaquenil may be affecting your liver. It's good to hear that your dr. is checking your liver enzyme levels a number of times to see if it really is plaquenil that is elevating your liver levels.

I had to do the same thing when I was experiencing problems with methotrexate. We weren't sure if it was the mtx or some other med causing the side effects. It took about 10 weeks before methotrexate was out of my system, and for most of that time it was pain 24/7. The good thing about coming off of methotrexate was that it ruled out my other meds as the cause of the side effects. So hang in there, David... hopefully it won't be too long before you can be on something that will offer you relief and very few side effects.

I'll check back to find out the outcome of your tests.

Good Luck!

Wow! And thank you for putting into words what I and so many others feel.

And thank you also for being the teacher that you must be. I am the mother of a 17yo, 15yo, and a 12yo that all have been positively influenced by a teacher. You have my utmost respect and admiration.

Andrea

Thanks for the encouragement. It takes me a while to write an entry. Sometimes, I'd rather not dwell on things. Other times, the thoughts are very slowly coagulating.

One thing that's nice is that I work with a woman who's dealt with RA for several years, so she's an invaluable resource. And she's really had to deal with the severe side of RA, something I've been spared thus far. Sometimes I hate to whine, to be honest, when I consider what she and so many of you deal with.

David,

Oh My God you are a wonderful writer. This is the first time I have read your thread and it is amazing. You have put in words everything I have felt and am still feeling since being diagnosed. I also live in Texas and have 2 high school students I wish you were their english teacher I am sure they would learn amazing things from you. Good Luck with your blood tests and I hope you find a medication solution soon.

Nora

Best wishes David.

I am thrilled to see such an important voice speaking for all of us. Although, I know of course, this is your blog, your experiences are so much a part of my life (and many others) it does in fact feel as if you are speaking for me.

I mean it when I say your voice is important.....and meaningful. I can't wait for the next installment.

I hope your test results reveal what is causing your liver problems.

Crispy