Monthly Archives: April 2013

Inner Peace and Invisible Pain

I have survived over a week with shingles and I have to say it was not easy. After having four kids, and RA, I should have a high tolerance for pain, I would think. Apparently, I do not.

But then again, the above mentioned wasn’t nerve pain. That falls into a category all by its unique self. I call it the invisible pain.

The rash has subsided, gone to pink again, but the swelling persists. I have a lopsided belly and my hip area is exquisitely tender, yet hard to the touch. I had no idea there was so much swelling involved with shingles. And since it’s the right side of my belly that’s inflamed, I feared for my liver. After nine years of methotrexate, I should fear for my liver!

But, my doctor palpated and said it was fine, just inflammation. A word I’m all too familiar with. And because of its immunosuppression side effects, he took me off the mtx until further notice. Today, I should contact my rheumatologist and tell him about it. Maybe he wants to start something else.

I’ve hesitated to call him because I’m afraid he’ll want to see me and a visit to him is a three-hour sitting around marathon. I can’t sit right now, not for three freaking hours! But, perhaps we can speak on the phone.

I never thought something could make RA take a back seat, medically speaking, but hats off to shingles. The pain is akin to having a flaming torch applied to your side, while a thousand knives hack away at you by turns.

After twelve days, the temperature on that torch is somewhat diminished and the number of knives has decreased to the hundreds. The area they now concentrate on is thankfully smaller. Maybe that’s why the effect feels lessened.

Yet strangely, amidst all this, I feel inner peace. I am being tenderly cared for, dare I say even pampered and catered to. I’m receiving the type of medicine one can’t buy, and has no price. One whose value can never be quantified, and best of all, comes with no side effects.

Unless, you count love.

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How Do You Spell Pain?

shingles

Pain spelled with angry red bumps.

So, life caused stress, which I believe triggered RA, which caused me to have to take a drug called Methotrexate, which then caused me to be immunosuppressed, which then left me vulnerable to come down with shingles.

I think I have that right. I might have missed a few steps. All I know is that yesterday, I reached the mountain peak of stress. The pain was out of this world. I spent it drugged up with Percocet. Kept to the every six hours dosage. When I was awake I could not think due to the pain. And to relieve the pain, I knocked myself out.

Which was good in a way. It relieved the stress of knowing my daughter is in Boston. Arrived right before this horrific event happened. Walked those streets right before. God help me.

I was sitting in my doctor’s exam room while all this was happening. Upon leaving, the young nurse engaged me in conversation, wanted some advice about pursuing her career. Talking to her made me forget the pain, but upon exiting the doctor’s office I heard my husband on the phone talking about Boston. I freaked, inside.

Rarely does my stoicism fail me, but my heart was pounding as it took two attempts to reach my daughter. I envisioned myself on a plane to Boston already.

Today, I have a new stressor. She is driving back to NYC with the rest of her things and no other company than her GPS. I tell myself that when I was 22, I was married with a baby. But, no matter what I tell myself, she is still my baby.

Thankfully, I think I have crested the mountain called Agony and am on the way down the other side. What started out as a dainty little row of pink dots has morphed into an angry, red, diffused eruption. It hurts and it hurts to look at it.

But, I know it doesn’t hurt as much as the people of Boston are hurting. My daughter spent four years there and I feel an attachment to that historic town. My heart goes out to all involved.

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.