Foot In Mouth Disease

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                               Foot in Mouth Disease  

One of the interesting “side effects” of living with a chronic illness, is learning to deal with oblivious comments. I call them “Foot in Mouth” disease.

Here’s my latest helpful moment:

My friend Deanna and I sat next to each other on a luscious, green lawn at our neighborhood park. We were listening to a local blues band play on a deep July evening. The sun, setting behind me, generated the perfect mix of skin caressed warmth and breezy shadows. We watched little kids dance like wobbly jumping beans in front of the stage. Adults drank wine and beer, pulled treats out of picnic baskets, and lounged into the lazy night. An elderly couple danced together next to the stage. I admired their affection until their hands reached for body parts best left to teenage PDA.

For the most part, I save my darkest whining and depression about my health to my husband and sister. But on that day, I decided to cross over my self-imposed line of emotional “light”, into a more vulnerable place and share what was really going on with me.

“I’ve been in a rough patch the last couple of weeks. Worse than usual, and I just can’t shake it,” I said.

“That sucks,” Deanna said, nodding her head in sympathy.

“Yeah, I’m trying to stay positive and not get sucked into depression, but when I have too many bad days in a row, it’s hard not to give into it.”

“Yeah, I know what you mean. Did you know I had MS?” she said, smiling in that super perky way.

“MS? I had no idea.”  I instantly switched gears to jump in with all the empathy of someone who “Get’s chronic illness”.

“About fifteen years ago, I started having all these symptoms. I could barely walk. It was terrifying.”

“That’s awful,” I leaned towards her, shouting over the growing volume of the band, “My husband’s first wife died from MS you know.”

“Oh yeah, I’d forgotten that.” She paused a respectful moment, then added, “When I was sick, I found this amazing book that changed my life”.

“What was it?”

“The Secret to Healing Yourself,’ she said. “I learned that not embracing my illness was the key to curing MS, and once I stopped embracing it, my symptoms went away. I’ve been fine ever since.” Pride oozed out of her like she’d climbed Mt Everest. “Not that you’ve embraced it, of course,” she said.

My body tightened from my toes to my jaw.  I felt my face twist and my sympathetic smile froze. But I turned on the laughter, acting like her words flowed by me with no damage. I turned back to the band letting the drum and bass fill me up, giving me a place to hold my anger.   I wanted to shriek, “How dare you imply that my illness is something that I embrace and hold onto like a thick, smelly, quilted blanket, discovered in my grandmother’s attic!”

My default anger mode is to avoid confrontation, so I left the show, righteous and fuming. I recreated the scenario in excruciating detail over the next couple of days with the few people who do “Get It” receiving copious amounts of sympathy. I’m not proud of this. I cancelled a future social commitment with Deanna. I knew this wasn’t mature. I knew my friend just didn’t understand how hurtful those comments were to me.

I tried hard to be enlightened, and spent hours twisting the incident upside down, trying to understand why I held onto her words with such tenacity. If I’d been in therapy at the time, it would have cost me hundreds of dollars to sort it out. I even wrapped myself with New Age truisms like: “I don’t want toxic people in my life.” Or “I need to be around people who Get Me.” I even succumbed to writing pathetic songs with self-indulgent lyrics: “I won’t let the hard times get me down. I’ll rise up over the edge of my crushed spirit. I’ll light a candle in the dark, for me and me alone.” Thankfully, I spared myself horrific embarrassment and didn’t share them with anyone.

Then, a week later, came a breakthrough.

I FINALLY “Got It”! Deanna’s words were too familiar. They were my own! It was that insidious self-judging voice that I try to ignore, that sits in the deepest part of my consciousness, waiting to attack like a shrieking soul-wound. Ready to sideswipe my daily battles to stay in gratitude, a positive force no matter how I feel. They shout sticky, gooey, words, that hold me stiff, like half dried glue. A part of me does believe that I must be “embracing” my illness or I’d be fine by now.

My Righteousness slipped off me, like a loose shawl. Eureka! I’d finally figured it out. This wound was not Deanna’s to give me, but mine to give myself. Ahhh. Now peace would return. All I needed to do was EMBRACE my inner judge and it would have no power over me! I declared to everyone around me that I’d only write positive songs of joy and gratitude and love from now on. I knew, with absolute certainty, that now that I recognized my demon, the inner critic, it would have no power over me.

I sat down to write the masterpiece of my life. I could see the video going viral. “LET GO of the inner critic, and you’ll be HEALED!” I’d be a chronic illness GURU! Maybe a national book tour, an international band tour. I’d be an expert sitting in the chair next to Dr. Phil, Dr. Oz, or yes, even on THE VIEW!

My head spun with glee, with glory, with optimism.

Then I realized two things:

  1. I’ve had this “Embracing and Letting Go” realization before. Many, many times.  Each time I thought it was brand new and would last forever, and each time I forgot about it in about two seconds.
  2. My friend isn’t the only one with Foot in Mouth disease.

The definition of “embrace” from Webster’s Dictionary says: A close encircling with the arms and pressure to the bosom, especially as a sign of affection. 2. Acceptance. So what does it mean for those of us with a chronic illness? Some days, I need my warrior self to fight like hell the physical and emotional challenges. But other days, I need to give myself permission to rest, to be sad, to hold myself gently and accept my limitations. Does that mean I embrace my disease?  No. But I do embrace the complicated, confusing, challenging, funny, and sometimes even beautiful, journey that is uniquely mine.

THE BEST FEELING IN THE WORLD

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The Best Feeling in the World

“We’re so lucky,” I said to my husband Andy after dinner, as we settled into an evening on the couch together.  “We’ve got a good life.”

“Yes,” he nodded, not taking his eyes off the computer, immersed in his year- long love affair with Ancestry.com. “We do.”

“We need to take these peaceful moments and realize how lucky we are.”

“You’re right.”

“Because you never know when things can get bad again.”

“Uh huh.”

“No really.  Something awful could happen at any moment.  Another family crisis.  One of us could fall out of love.  The house could burn down. Everything could fall apart. Maybe even tomorrow.”

Andy looked over at me.  “Or, things could be great.”

“They could, but they could also be bad.”

“Or they could be great.”

“Or it could be horrible!” I was getting annoyed.  Andy obviously did NOT get the seriousness of this discussion.

“Things could just be fine and good,” Andy said, clicking away at his keyboard.

I raised the pitch of my voice.  “But we have to be prepared for the bad times.”

Andy sighed, and turned to face me, clearly gearing himself up for an, “I don’t know what’s happening here, but I better pay attention” moment.

I took a deep breath and felt myself begin morphing into a three-year-old dive towards a full-blown temper tantrum. How could Andy not understand the insightful, significant, and most importantly, RIGHTNESS of my worries? Life is UNPREDICTABLE!

“This is ridiculous,” I said in a tight voice, struggling to keep my demonic inner toddler quiet. I was a grown up after all. “This is about to be the stupidest fight we’ve ever had.”

“Yes, it is,” Andy agreed, looking wary at my abrupt turn-around.

“But do you get where I’m coming from?” I said, losing some ground in my attempt at maturity as my both my hands became tight fists. I REALLY didn’t want to let go of this opportunity for a righteous rant.

Thankfully, instead of continuing up the ramp of disaster, a thread of sanity appeared and I managed to squeak out a choked, crooked giggle. It worked. My giggle turned into a long, deliciously painful, belly laugh, and every time I looked at Andy’s confused face, I howled louder. I’m not sure he ever really got what had happened with me.

But I did.

Yes.  The best feeling in the world is all around me.  When I choose to see it.

 

 

 

“The One with the Decaf Chai”

 

 

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     “THE ONE WITH THE DECAF CHAI”

To help keep my symptoms of Fibromyalgia less debilitating, I’m on a very restricted diet. No grains, sugar, dairy, most fruit, etc. etc. (I call it the “NO” diet.) Monitoring my food does not heal me, but I do feel better when I follow what I know works. I’ve been doing one form of diet or another since my mid-twenties. Even so, maintaining my willpower remains a constant challenge.

After slip-sliding my way into enjoying way too many FOODS I WANT TO EAT BUT SHOULDN’T, I realized I needed to get myself back on my official “NO” diet. (Waah!).

At around 9:00 p.m. on day three of the ramped up diet, I was starving and opening cupboards and the refridgerator door in my kitchen, going back and forth, hoping against hope that some magic food would appear that could satisfy my desires. My blood sugar hadn’t stabilized, and sugar detox made me jittery and grumpy.

After dinner snacking has always been my downfall because I’ve eaten consciously all day and I want a REWARD. I’ve done my share of turkey roll ups, almonds, spinach, salmon, or for extra special fun, a tiny bite of goat cheese. All I want to do is stuff my face with: chips/crackers/and chocolate-preferably in brownie or cookie form.

I gave up on the possibility of any food fulfillment, and decided to make one more turkey roll up. The combined smell of mayonnaise and turkey made me queasy and my fingers got slimy from piling turkey, avocado, mayo, and goat cheese on my plate. (Keep in mind that this is a turkey roll up with NO tortilla…)

As the water for tea began to whistle, my husband Andy, also scrounging for a snack, cut himself a fresh piece of the peach pie I bought for him that day. (Am I the best wife ever?). As I stared down at my plate, I noticed Andy rummaging around in the tea drawer looking worried. He painstakingly took out each box of tea, put it on the counter, then picked up every loose tea bag still in the drawer, one at a time, looking at it carefully.

I should mention here that my husband is the master of routine. I love that about him. (Most of the time.) Every night he makes Decaf Chai with a splash of half and half along with dessert. If we’re watching TV on the couch together, he sweetly puts his evening treat into a bowl so I don’t have to see what he’s eating. This happens EVERY night. I’ve long since stopped paying attention to him in order to keep my own sanity, but I can still hum a tiny song of ‘poor pitiful me’.

“What’s wrong?” I asked him.

“There’s no Decaf Chai.”

He looked upset, pitiful, like it’s the WORSE THING THAT EVER HAPPENED TO HIM.

“Well don’t expect me to feel sorry for you,” I said, as I tried to roll up the turkey and a chunk of goat cheese fell out.

“Why not?” He had the same blank look as he gets when tell I him we need to “Talk”.

“Are you frickin’ kidding me?” My inner detox demon focused with laser vision onto my husband. An easy target. “Why do you think?”

“I don’t know.” He froze with a deer in the headlights panic.

“Look!” I pointed my finger at my plate. I kept my voice low, trying to hold back the crazy that was ready to fly out at him. “I’ve got to eat a turkey rollup at 9:00 at night! And every night for the foreseeable future, and you have the nerve to be upset because for ONE NIGHT, one stupid night, you don’t have your Decaf Chai?” My low voice rises along with my volume. “For one stupid night in how many years I didn’t notice you were out of TEA?”

I went on and on, while my husband shrank against the kitchen cabinet door.

Andy hates fighting and lets most things roll off his back, but he tried to speak up in his defense. “I’m sorry you’re having a hard time, but it’s not my fault.”

I wasn’t buying any of it. I wanted to fling my turkey rollup in his face. “Poor, poor you,” I growled at him.

Even as I said this, I knew I’d gone way beyond rational and way beyond fixing this with an easy apology, so thank God a faint, barely noticeable Voice of Reason forced me to stomp my way out of the kitchen to the living room couch. Rage had captured every cell in my body. I felt angry at everyone, everything, my limited life, and the entire universe. At the same time, to add my misery, I piled on a massive guilt trip because I really do have a great life aside from health issues.

I burst into tears. Which in retrospect was the best strategy. Tears are my “get out of jail free” card, guaranteed to create sympathy. It certainly works better than screaming like a banshee. My husband bravely came and sat with me until my tears became hiccups, then nose blowing, then words, then another cycle of wailing until I finally calmed down.

Andy held me as I apologized for being looney-tunes. Then he apologized for not getting it.

After a few more minutes of talking, we went back into the kitchen. Andy chose Apple Spice tea. I took a bite of my turkey rollup. This time, a chunk of avocado slid onto the plate, taking with it most of the lettuce. I scarfed it all down in about two seconds, washed my sticky, slimy fingers, then settled in to the couch with Andy who’d added vanilla ice cream to his bowl of peach pie. I glanced at it once, managed to keep my mouth shut, and focused back on the TV show ‘Friends’.

This was the episode called “The One With The Ride Along”. Any fan of ‘Friends’ knows that Joey believes in food like some people believe in God. Joey, Ross, and Chandler, were on a ride-along with a NY cop. Joey had brought a sandwich to munch on. He claimed with utter conviction and awe, that it was the best sandwich in the city.

At one point they thought they heard a gunshot from nearby and Joey dove right in front of Ross, keeping him out of harms way. The cop called Joey a hero, even though it turned out it was only a car backfiring. Afterwards, Ross couldn’t stop thanking Joey, gushing about how brave Joey was to try to protect him, and that Ross would be in debt to Joey for the rest of his life.

Then Ross finds out that Joey was just trying to save his sandwich.

Boy, do I get that.

Cloning Jon Stewart

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I hate “one foot in front of the other” days. The kind of days where not only my body doesn’t work, but I’m a hopeless, exhausted, hot wired, sluggish, mess.  To make my bad day even worse, I layer on a thick, viscous Grand Master Judge, who declares that I’m getting a big fat “F” in positive thinking. I try to climb out of my despair, rung by rung, on a rickety wooden ladder that threatens to break with each tentative hand hold and step. Nothing helps.

I had one of those sucky days last week. Sometimes a long to-do list helps, so I dug in with my pen on paper, sorted out the driving route I needed to get my errands done, and set out wearing my icky, mud-likemood like a Antarctic coat.

I turned on the radio to find Terry Gross. Thank GOD!!!  A welcome diversion!

I drove around town as she interviewed Jon Stewarts’ wife, Tracey, who has a newly published book about her life journey with animals, and the animal sanctuary she and Jon started on their property in New York.

Surprisingly, or maybe not, Tracey has a James Herriot, wicked sense of humor. She told one absurd animal story after another, forcing giggles to sneak out through my commitment to misery.

For example, while filming a video, a young bull came up behind Tracey and mounted over her shoulders. Needless to say that interview ended quickly. She’s a great animal advocate, explaining how pigs HATE being dirty-more than most animals. They roll in mud because their skin is so pink and sensitive due to human breeding that they sunburn easily. The mud protects them. Left to their own devices, like cats, they poop in one place. Interesting and sad, given how most pigs live in this country.

Tracey is also allergic to cats, big time, (which is a bit troublesome when you run an animal rescue), and avoided going to Jon Stewart’s house for weeks when they started dating because he had two cats he adored. On her first visit, while she was in the bathroom, one of his cats leapt onto her face and wouldn’t let go. She ended up swollen and scratched as she tried with little success to pull off the kitty, one paw at a time.  She couldn’t scream out for rescue as Jon was talking to David Letterman who was offering Jon his first TV appearance. She couldn’t mess that up!

As I turned down the road to my house, her love of life, her passion, her respect for Jon and her acknowledgement of him as a partner, boosted me up a few rungs of the despair ladder. I imagined how their evening conversations, even on the most dismal, stressful days, would be filled with belly laughs, snide digs into the dark side, and accepted embellishments to make any story hilarious.

My dark black mood swooped back over me, a too-small cape strangling my throat. I felt so far from funny in my life in that moment. My husband’s got a great sense of humor, but he’s no Jon Stewart. Who is? (No offense Andy, you do make me laugh-a lot, but this is MY pitiful story!) I also think my dog’s hilarious, but most of the time he’s asleep and not helpful.

A Tabernacle sized chorus of “My Life Sucks” started playing in my head.

“Enough of this crap-ass whining!” I yelled to myself. “Your life is good, I mean you could be a Syrian refugee for God’s sake. Get over yourself!”

Ugh. Then I knew I hit true bottom, below bottom. To compare my struggles with those who’ve lost everything; a home, job, future, family and friends, is obscene. Disrespectful.

I yelled at myself: “You don’t know anything about real suffering! Deal with it.”

As you might expect, the rest of the day continued on in various states of moping. That evening, I finallyI gave up on feeling any better and went to bed and sank into blissful denial with John Grisham’s latest novel.

Thankfully, the next day my dark cloud disappeared as if it had never been there.

But I have to wonder. Since it’s too late to marry Jon Stewart for constant giggles, then maybe there’s a Jon Stewart App out there. Something that would give me the exact joke I need with the touch of my finger any time I start sliding down that slope of self misery. Now that Jon’s retired, maybe he’ll have time to clone himself. I’m all in.

 

Sixteen Things You Must Know About Hospitals!

IMG_1522Lennox post surgery for Mast Cells. Thankfully, no cancer!

After a painful and scary night due to major gut pain, nausea, clothes soaking sweats, and over all pitiful whimpering, I ended up in the ER. After three and a half hours of blood work, a CT scan and numerous doctor visits, they deemed my misery significant enough to admit me to the hospital. In my doped up state, I managed to stay awake and aware enough to gather many lessons crucial to a successful hospital stay. Here goes:

  • Unlike on TV, no one will ever run to greet you at the door of the ER.
  • Just because a staff member says “yes” doesn’t mean it’s going to happen.
  • Each nurse and doctor has a different opinion about what’s going on with you, and they are always right.
  • Don’t be that excited when they give you a diagnosis with a fancy name. If “itis” is put at the end of a word, it means they don’t know what it is or how to cure it.
  • Don’t rat out the nurse who tells you how to turn off the “Insidious Beep” button.
  • No matter how good the hospital menu looks, the only edible foods are bananas and peanut butter.
  • Vitals must be taken exactly 5 minutes after you fall asleep or they don’t count.
  • Don’t get a urinary tract infection. Seriously. Just don’t.
  • There’s no way to walk down a hospital corridor as you tug a rolling hanger-thingy that’s carrying three bags of mystery fluid, while wearing a hospital gown with butt cheeks peeking out the slit, and wearing gray socks with sticky bottoms, without looking like you are auditioning for a remake of “One Flew Over the Cuckoo’s Nest”.
  • Sponge baths are good in theory, but don’t ever think that you don’t stink.
  • Always take the wheelchair. Don’t miss your last chance to be a kid again.
  • Texting does not make staff more efficient-but it does make you sad when they pull out their phone to check it while you’re explaining your unbearable pain and misery.
  • Getting to the bathroom with no help is a worthy goal.
  • IV pain medication: The best invention in the history of mankind.
  • Therapy dogs are a good idea, but don’t be fooled. It’s about their treats, not you.
  • Always ask the nurses about their own lives so they like you better.