Category Archives: Inflammatory conditions

Meaningful Usage

What has meaningful use done for you lately?

I first heard the term when my son was trying to share what he did at work. He’s in nursing informatics and I was curious. It’s a field I had spent maybe five minutes considering.

What he said came across as gibberish to me. I’ve been retired from nursing for almost a decade. You don’t forget what you know, but it’s a dynamic profession and things change rapidly.

Though I didn’t quite grasp what he said, I didn’t question him about it. I just let myself enjoy the moment of conversation with him. I figured it had nothing to do with me anyway.

Well, color me wrong.

This past November I had my usual rheumy work-up done prior to my visit. Other than having my arm bleed out because I lugged in groceries immediately after, nothing out of the ordinary happened and I gave it no further thought.

In January, I received a bill from the lab. My insurance had denied the claim.

Remember the chasm that Indy has to cross in Indiana Jones and the Last Crusade? There is no visible bridge, but he has to believe that there is so after steeling himself, he puts out his foot to take the first step into nothingness.

That’s exactly how I felt when I picked up the phone to speak to my insurance. When I finally got to a live person, I was told they’d denied it because they did not cover treatment for obesity.

What?

They also mentioned coding for high white blood cells, pneumonia and some other diagnoses, but by then I’d tuned them out and was patiently waiting for my turn to speak. Obviously, I’d been mistaken for another patient.

But, no. There was enough evidence pointing to me. Talk to your doctor they said.

I called the office and he himself called me back. At 8 p.m. The only time doctors ever called me back at such an hour was when I’d been on shift. I was surprised by the late callback and I was even more surprised that it was him.

I quickly explained what was going on. The man has RA as well; he needs to not work so late.

“It’s Meaningful Use,” he said. “We have to put the weight down and then they go by the BMI.”

My son’s words rang in my ear: “Now we have what’s called meaningful use.” I didn’t realize at the time that the words took capital letters.

Before I spoke with the doctor, I’d been a little mad at the nurse practitioner who, per the office, had added the “obesity coding” to the lab order. We’d never discussed my weight, or any issues related to it.

I felt that I had been diagnosed (misdiagnosed) behind my back. I’d been betrayed, judged, found lacking, or rather overabundant, and worst of all, billed for $250.

But now I understood what had happened and my options raced through my mind:

Option #1 – Refuse to be weighed.

Option #2 – Refuse to let the office add the “obesity coding” to my lab order

Option #3 – Get my BMI within normal limits.

Option #4 – Do all of the above.

At my next appointment, we discussed the problems and options we faced in dealing with this new facet of going digital. I well understand the hiccups that come with changes, the fits and starts of instituting a new way of doing the same old thing.

BMI is not the most useful way to determine weight status. Muscle weighs more than fat, so that alone skews the numbers. With a present BMI of 29, I fall into the “overweight” category.

The BMI formula takes into account your height and weight. Per last year’s bone density study, I am still 5’ 2” in height. The office has my height listed as 5’ 1” tall. That one inch is probably what threw me into the obese category. Shorter = fatter.

What would be truly meaningful is if the whole picture of the patient was taken and not just a couple of numbers. My primary, documented diagnosis is Rheumatoid Arthritis. And part of the treatment for it is the use of corticosteroids, which tends to affect weight.

Of course, that is not the only reason I am carrying around some extra baggage, but still, it seems unfair, or at least not well thought out, to devise a system that singles out one statistic and ends up penalizing a patient for their very illness.

Perhaps this quirk in the system can be revised or overwritten. At this point all it’s done in my case is cause confusion and aggravation, plus adding to the workload of all involved.

My doctor is now working his magic to retroactively code the November lab order appropriately so that the insurance will cover it. For this latest appointment, I crossed the chasm in good faith that he had indeed revised the coding for February’s labs. I suppose I will find out in a few weeks whether or not the bridge materialized.

 

 

 

 

 

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An Apple a Day

I mentioned before that I’ve been studying foods for a few years now. When I decided I would write some food-related posts on this blog, in my own roundabout convoluted way of course, I surprised myself with just how much information I had gleaned.

I was also surprised to find composition books filled with neat penciled, cursive writing. Such patience. Such yearning. Such neatness. Such legibility. Such heartache. Running my fingertips lightly over the words as I read, I felt the me of so long ago. The me who had written them, as if the careful writing down of this vital information would somehow help my pain go away.

Fear not. I do not plan to impart solely the clinical. More so the personal, and share what I believe has helped me. The main objective for this study of foods was/is to combat inflammation. That to me is far more important than thwarting fat. Because having a few extra pounds of fat on board is not as lethal as having a few extra ounces of liquid on board.

I learned that the hard way a few weeks before being formally, officially, definitively diagnosed with Rheumatoid Arthritis. Prior to that event, I ended up in the ER with fluid squeezing my heart and lungs to the point that I presented as an MI patient.

I’d known there was something wrong with me for a while. Something that rest and sleep (hard to come by with a job and kids) and regular doses of OTC pain killers couldn’t seem to touch. My primary care physician mentioned the possibility of RA and handed me over to a rheumatologist.

Unfortunately, this rheumatologist turned out to be the wishy-washy kind. “It could be this. It could be that.” I don’t remember him laying a finger on me, not to examine me nor even to offer a bit of sympathy. And not surprisingly, he never came up with a diagnosis.

But he did treat. Vioxx, right before that blew up. Advil, yeah, like I hadn’t thought of that already. Paraffin wax baths for my hurting hands, hah! I’d read about those in my Fundamentals of Nursing textbook in 1978. This was 2004!

I thought we’d come a long way, baby, but apparently he hadn’t. In August of that year, I went to my PCP and spoke my mind. “That man is going to kill me.”

Little did I know.

He referred me to another rheumatologist and I was given an appointment for mid-October, new patient and all. I tried to think positive. Help was coming. I could see the light at the end of the tunnel.

On Oct 3rd, what I saw were the bright overhead lights of the ER exam room where at least ten people floated around me, sticking needles into my veins, needles into my radial artery, pills under my tongue, O2 onto my face, leads onto my whole body for a 12 lead EKG.

And the funny thing was that I didn’t care! I didn’t care what all they were doing to me because when you can’t breathe you don’t give a crap about anything else.

After 24 hours of very expensive testing, it was determined that my heart and lungs were fine. As the ER physician put it as he sat next to my hospital bed, “It’s your inflammatory condition.”

It was not his place to diagnose a specific ailment and then come up with a long-term treatment plan for me, to do the job of the specialist who should have. It was his job to pinpoint the obstacle to my heart and lungs functioning as they should right then. I returned his wry smile with my own. We both knew why I was there, why my status had deteriorated to the point where he and I ever had to meet at all.

I immediately envisioned chest tubes being inserted into me to drain the fluid. I’d lost track of how many times I’d assisted a doctor with their placement in critically ill patients. Had I been thinking clearly I would’ve realized that had I needed that particular intervention, I would already have a Pleurevac hanging off the side of my bed.

Though I lay amidst wires, lines and tubings, which made for one very restless night, it was only IV lines, heart monitor leads and an oxygen sensor clipped to my index finger that held me captive to the bed. That, and my yet-to-be-diagnosed disease.

I was sent home on oral steroids to treat my pleural and pericardial effusions. That’s when I first met up with my buddy, Prednisone. We’ve had a rocky on and off relationship these past ten years. Mostly off, but I like to keep my buddy handy, or as I tend to think of him, my frenemy.

Our first dalliance lasted till the following February. By the time I got to see my new rheumatologist, I’d gone through the one week’s worth of treatment prescribed by the ER Doc. The first thing he did was to put me right back on the steroids. “We don’t want it happening again,” he said. No, we sure didn’t.

The next five years were a blur of pain, but at least I knew why.

Come 2009, something happened. I’d left my job several years before and my youngest child had flown away to college.  I began to feel better physically. The fog was lifting and I began to look around. And I thought wait a freaking minute. There’s gotta be more to this than pain and drugs. And so began my journey, into exercise, into foods, into love. Into me.

“What’s Your Donkey?”

A few months ago, I attended a business conference and one of the presenters, a videographer, told a story about filming in a small village whose name I can’t pronounce nor remember. She asked the women what would make life easier for them in that remote village and they said, “A donkey.”

At first she was surprised at such a simple request, but they explained how a donkey would help them till the soil and then carry their produce to market. There were other reasons as to why a donkey would make such a difference in their day-to-day existence so they organized a means to get the village women their donkey.

That talk, in reference to setting up a business and figuring out our needs, made quite an impression on me and it got me to thinking. What’s my donkey?

In my stand-off with RA, there are several inflammation markers I keep track of. As far as I remember, my sed rate has been normal or close to normal. (I am now the proud owner of my medical history for the last nine years. I asked and I received a CD of my chart. I will peruse later.)

The other marker, the one that more closely reflects how I feel physically, is my CRP. That has spiked more often than not over the years. Last fall I was feeling a little crappy and sure enough my CRP was 16. At last month’s visit it was nine. When it’s close to normal (4.9 or less) I feel terrific. Nine is good, awful good.

When my CRP is normal or near normal, I feel 20 years younger and just as spry. A while back we had to replace the water filter on our fridge and without even thinking, I went into a full squat, my tush almost raking the floor by my feet. My husband stood by my side, confident that I could not dislodge the filter from the bottom of the fridge without his muscles.

This is a man who road and mountain bikes, surfs (when there’s a swell, he once got kicked out of a surf spot because he was catching all the good waves. He’s used to Pacific Ocean swells; the Atlantic doesn’t quite cut it) and is younger than me. Since he was annoying me, I ignored him until he cried out, “I can’t do that! Squat like you’re doing now.”

I pressed on the end of the filter and it popped into my hand. I stood up, coolly handed it to him, then left him there, transfixed, with his mouth hanging open. This is also a man who had seen me at my worst, when I thought the fight with RA was lost or would be.

But, I said no, not yet.

And so, that is my RA donkey: a low, or normal, CRP.

And the continued flexibility to do full squats whenever I darn well feel like it.

 

 

Peals

Many moments in my life ring in my ears
Things that I’ve done
Things I’ve not done
Words that I’ve said
Not said

I hear the voices, the conversations
Sometimes they keep me up at night thinking what if
If only
If I could do it over
If I’d had the chance to do it
Once

Sometimes the conversation is only with myself
My now self and my past self
Other times, it’s with that other person
I hear the words as I relive the moment in my head,
the voices clear as day deep in darkest
night

Some are joyous to remember
and I bask in memory’s glow
sinking deep into my pillow
as it lulls me gently into such sweet
sleep

Some have the force to make me cry
as if they were happening anew
As though time reversed itself
and sent me back to suffer pain, again
Why?

One can never know
I can never know
But I’ve learned to live
with the sounds of bells’
peals

Until this last continuous sound,
a noise which cannot be
contained,
maintained,
sustained

No, this incessant din
I will not abide
For it is naught
but an artificial ring
caused only by my
pill

 

***Tinnitus, ringing in the ears, compliments of Plaquenil.
     I’m jumping ship, until disproven.

On This Earth

A writer I much admire once wrote, “. . . waiting is the tense in which life is truly written.” Those words struck a chord with me when I read them three years ago. They’ve never left me. And sometimes when I am sitting in my rheumatologist’s waiting room, I think of how true those words are.

Reading Billies’ excellent post on waiting reminds me I meant to write about my time spent in that waiting room. While I was there in May, I came to the hard decision of looking for another doctor. Though things flow at a creeping pace at this office, I arrive on time at 3:30 p.m.

At 5:00 p.m. I see the front desk receptionist walk by me with her purse. She hasn’t yet taken my co-pay. I’d signed in and exchanged pleasantries with her and then taken my seat in the crowded waiting room. Deep into my reading, I only entertain a passing mental query as she goes by. After all, there is other staff.

At 5:30 p.m. the tech who does the preliminary workup, vitals and the dreaded weigh-in, sees me through the open sign-in window. “Did they pull your chart?” he asks.

I shrug my shoulders. How do I know?

He walks around and opens the door for me. “I’m sorry,” he says, as he escorts me toward the back. He chats with me as he works, asking how my writing is going. Fine, I say.

Before I’m shown to an exam room, I have to go up front and give my co-pay. “I can’t take a credit card. It’s after five,” says the young girl left at the front desk.

I shrug again. Not my problem. I’ve been there more than two hours by then. Somehow she gets it done.

I text my husband: “Two hours and haven’t been seen.”

“Unacceptable,” he fires back.

Sometime after 6:00 p.m. the PA comes in and makes himself comfortable. He takes an extensive history, dating from my last visit two months previously. He conscientiously taps onto his laptop my every utterance it seems. He asks me how to spell a word; I tell him. “I hate English,” he says with a sheepish grin. “It has its quirks,” I say.

He spends over 30 minutes with me, typing, chatting. I feel like I’m with family, the whole process is so familiar. With a shake of the hand he leaves me to my reading and waiting.

Around 7:00 p.m. my doctor walks in; smiling, he extends his hand towards me. He’s always smiling and he always shakes my hand. “How are you doing?” he asks. “Sorry about the wait.”

“It’s OK,” I murmur.

He meticulously reads what the PA wrote, then reviews certain comments/complaints. Satisfied with my responses, he asks me to step up onto the exam table.

He bends every one of my fingers by turn (ouch), then has me lie back and proceeds to bend my legs, my arms (no problem there), and listens to my heart, my lungs. He guides me to sit up and then checks my eyes and inside my mouth searching for RA’s sidekick, dryness of the mucous membranes. All checks out and he goes back to the desk. I step down and go sit across from him.

He checks his phone researching something for several long minutes, then comes to a decision regarding my current medications. He goes over the protocol with me. “You’re doing very well,” he says with that smile.

Returning his smile, I lock eyes with him for a moment. We are coming to the end of this slow-moving ballet we’ve engaged in for almost a decade.

And I remember why.

Because of him, I remain here, on this earth.

We shake hands and I make my way to the front desk. I schedule my next appointment, then exit the office. It is now 8:00 p.m.

Written for: Weekly Writing Challenge: Fit to Write

All Things Being Equal

wean sheet

My doctor is so conscientious. He made out this steroid wean sheet for me on my last visit. I’m making my way to Day Zero.

As I slowly say goodbye to my frenemy, Prednisone, my body is realizing something’s up.

This is a for-keeps kind of thing. I suppose it needs time to adjust. And it has started sending me signals, namely via hands and ankles.

Since I have a sore right thumb, I’ve taken to Ace-wrapping it, and of course my hand, for the night. Two mornings ago I woke up with a very painful left hand, but my right was A-OK.

I thought nothing of it, unwrapped my hand and got up to meet my day. I massaged my left hand at intervals and it took several hours for the pain and stiffness to go away. RA’s signature.

At the end of the day it hit me. Warmth. I’d kept my right hand warm encased in its Ace wrap all night. There was visible swelling along the base of the metacarpals, a definite RA calling card. But, it didn’t hurt and it didn’t affect my mobility.

 

Aha! I thought. What took me so long to figure that out? Nurse heal thyself.

sewing glove

I’ve had these gloves for many years and they still give my hands and wrists great support when I sew or quilt.

 

Since I was already in bed when the revelation hit me and my other Ace wrap had been left in my office, I opened my bedside drawer and grabbed my sewing glove.

It would have to do.

And it did.

This morning my hands felt equal. A little stiff, a little swollen, but barely sore. And most importantly, functional.

It’s all I ask.

 

 

 

And what makes me feel warm all over?

My little medicine  munchkin.

manicures

Blowing on her nails after Na did them. Another reason I need agile hands. To give my baby her manicures!

 

 

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.

Looking for Mr Goodflake

I conducted an experiment on myself. My main objective was to satisfy a childhood craving, and secondarily, to see if what I’d read was true, at least in my case.

Growing up, I never went hungry, though there wasn’t a lot to choose from in the cupboard or refrigerator. The one cereal we usually had on hand was corn flakes. Sometimes a bowl of cereal would be my breakfast, sometimes my dinner. With just a bit of milk, it hit the spot.

In my own kitchen, there lived a great assortment of cereals. Every kid had their own wish list, it seemed, though I still stuck to my favorite. But, as my nest was emptying so were the cupboards of that crunchy stuff. Soon, there was barely any cereal to be found in my home.

It was during this gradual exodus of children and foodstuffs that I became so ill I ended up having to give myself Humira injections with hands that couldn’t even close around a steering wheel. After several years of this, and seeing no improvement, I stopped. I decided I would accept the Methotrexate, and the Prednisone if needed. But, I would concentrate on exercise and I would study food.

I began keeping a notebook with lists of different foods and their benefits, or deficits, regarding inflammatory conditions. I learned that strawberries and chocolate were good for me and corn wasn’t. I avoided processed foods due to the corn syrup used in them, but my main reason for doing so was to control and maintain my weight. I still had the occasional popcorn at the movies, or the rare corn on the cob. Corn flakes, though, never entered my mind.

Then about two months ago, the craving hit. I ignored it until one day while walking through the grocery store, my cart made its way into the cereal aisle and stopped. I scanned the never-ending sea of cereal boxes looking for the corn flakes. I found them relegated to the bottom shelf; not even rating eye-level placement. I pondered for a while and then made my decision. A 12-ounce box was soon joined by a quart of 2% milk, another item that had been absent from my home for years.

After that first box, a second one followed. Instead of my usual bagel or a couple of scrambled eggs, I would shake some flakes into a bowl for breakfast. What could be easier? And if my husband wasn’t going to be home for dinner, well, there were the corn flakes. Why cook for just one?

Soon, my hands began to feel achy in the mornings. And then they began to be painful. They felt as if someone had pumped air beneath my skin. They didn’t look blown up yet, but they felt like it. Added to that, I felt stiff and achy in general.

I dumped the, by then, large-sized box of corn flakes into the trash. Within a week or so, my craving was gone and so were my overall achiness and swelling of the hands. I felt more energetic and my outlook brightened again. It always goes dark when pain and immobility first hits.

But now, I’m back to “normal” again, and I’m left wondering; was it the overdose of cornflakes?  Was it the newly added dairy to my diet? Or was it all merely coincidental with a flare? There are too many variables to come to a definite conclusion, but of one thing I’m sure: They sure did taste good.