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Behind The Smile – Invisible Illness Awareness


30 Things About My Invisible Illness You May Not Know

1. The illness I live with is:  Stiff Person Syndrome & insulin-dependent diabetes.

2. I was diagnosed with it in the year:  Stiff Person Syndrome (SPS) in 1994, diabetes in 1989.

3. But I had symptoms since:  SPS symtoms began in 1989 or 1990.  It can take years to get an accurate diagnosis.

4. The biggest adjustment I’ve had to make is:  saying goodbye to my former life, the person I was before.  Learning my identity is who I am, not what I do.  Micromanaging every day with what needs to be done, energy level, severity of symptoms, with medication, timing, and lots of preplanning.

5. Most people assume:  A smile & positive outlook mean everything is okay.  “Coming to terms” with a life-altering diagnosis is not an acceptance conclusion … but a daily coping struggle.

6. The hardest part about mornings are:  wondering/waiting to see what kind of day it will be & waiting for medication to kick in.

7. My favorite medical TV show is:  I do not watch medical television.  I have a starring role in a reality series, yet to be cancelled, though I plead with the producer.

8. A gadget I couldn’t live without is: my insulin pump, glucometer, & laptop.  Oh, & phone.  That was before diagnosis too! 😉

9. The hardest part about nights are:  physical comfort, keeping my fatigued body awake past 9, & being gentle with myself over morning intentions left undone.  Surrendering my ever-present worries to God.

10. Each day I take __ pills & vitamins. (No comments, please)  Varies between 20-25, which does not include other treatments/procedures.

11. Regarding alternative treatments I: exercise, use supplements prescribed by my physicians, & take a needed hot soak or sleep on top of an electric blanket for muscle aches.  I enjoy peaceful home surroundings — music, scented candles, fountains, solitude.

12. If I had to choose between an invisible illness or visible I would choose:  invisible.  Though greatly misunderstood with “presumed normalcy”, it is nice to pretend to be normal, often to avoid not-in-the-mood explanations or social discomfort/overconcern directed toward me.  (Swarmed by a caring group with an unexpected mild spasmodic episode in church.)

13. Regarding working and career:  Making a life with physical limitations & challenges is work.  Enjoying life is a career. 😉

14. People would be surprised to know:  Even though I have had SPS for over two decades, coping does not get easier with time.  Life remains tough; I still grieve; & alone, I cry.

15. The hardest thing to accept about my new reality has been:  the impact on those I love, knowing there isn’t a cure, & the grim reality of possible future progression.  Treatment & coping are daily and for life.

16. Something I never thought I could do with my illness that I did was:  raise my youngest child, have a positive impact on others, & run a 5K with a weighted jogging stroller in my mid-fifties.

17. The commercials about my illness: do not exist.  Stiff Person Syndrome is rare — incidence is one in one million.

18. Something I really miss doing since I was diagnosed is:  the spontaneity of unhindered, pain-free movement, the freedom to live each day of my own will, playing in the grass with children.

19. It was really hard to have to give up:  physical independence & everything that goes with it.

20. A new hobby I have taken up since my diagnosis is:  blogging, web design, dabbling in several things. 🙂

21. If I could have one day of feeling normal again I would:  Living most of my adult life with SPS, I cannot imagine what I would do.  Probably run like a hyped dog, without direction, after being set free from his chained boundaries.

22. My illness has taught me:  A renewed love & trust in God.  Patience, faith, hope.  The value of humor.  Discovering hidden resources of myself. The beauty of a moment.  The miracle of simple.  The stark reality of everyone’s mortality.  Life is fragile & beautiful.

23. Want to know a secret? One thing people say that gets under my skin is:  In a condescending manner, you look good; you look healthy; you must be having a good day … undermining the severity of what I live by how I look.  Or… “It’s just…” again minimizing the enormity of my reality.

24. But I love it when people:  tell me I inspire them.  Helps give reason & keeps me focused.

25. My favorite motto, scripture, quote that gets me through tough times is:
Thou wilt keep him in perfect peace, whose mind is stayed on thee; because he trusteth in thee.
~
Isaiah 25:3 (ASV)
Life isn’t waiting for the storm to pass; it’s about learning to dance in the rain.”

26. When someone is diagnosed I’d like to tell them:  I understand.  It is hard.  Always hope.  Love, laugh & live forward… in spite of.

27. Something that has surprised me about living with an illness is:   Experiencing the way God works.  Discovering a quirky creativity & sense of humor in a tragic diagnosis.  Meeting some of the most amazing people living with adversity … inspirations, friends.  The number of people who live with a rare/invisible illness & social stigmas is astounding.

28. The nicest thing someone did for me when I wasn’t feeling well was:  hold me in loving understanding without saying a word.

29. I’m involved with Invisible Illness Week because:  To be a proactive advocate is being an empowered voice to help an uniformed world understand, if just a little.

30. The fact that you read this list makes me feel:  honored, humbled, & hopeful. 😉

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September – My Diagnostic 9/11

“For me and my family personally, September 11 was a reminder that life is fleeting, impermanent, and uncertain. Therefore, we must make use of every moment and nurture it with affection, tenderness, beauty, creativity, and laughter.”  -Deepak Chopra, M.D.

On September 11, 2001, I sat on my sofa watching The Today Show, in horrified disbelief, as two airplanes flew into The World Trade Center.  Flames engulfed the buildings for moments of dreadful suspension before collapse. . .a dark cloud of destruction rising to obscure visibility.  News anchors gave a valiant effort of trying to keep personal emotion from professional reporting of the carnage — no answers for the massive confusion, destruction, death. . .screams, human and rescue vehicles, combined in shrieks of unified despair.

Soot-covered victims and first responders emerged from the thickening smoke, survivors and heroes.  Including the Pentagon attack and the plane crashed in Pennsylvania, *over 3,000 people were killed, including more than 400 police officers and firefighters.

Twelve years have passed, but 9/11 will always remembered — in memory of those who lost their lives, in honor of our military, first responders, and the resilience of the American people with the rebuilding of the site of the Twin Towers with The National 9/11 Memorial.

In September of 1994, I had yet another diagnostic evaluation to try to diagnosis the elusive progressing symptoms I had been experiencing for four-five years.  The previous months had become a rapid unraveling of physical ability to a frightening uncertainty as to the cause.  Waiting in the neurology waiting room of a large teaching hospital, I was keenly aware of the macabre movements of other patients, various gait aids, and tried to calm my heart of ‘worst-case scenarios’.

My diagnostic neurologist is one of the country’s finest.  After a thorough clinical evaluation, I was given an electromyogram (EMG) and nerve conduction study, both extremely uncomfortable tests, especially with my diagnosis. . .symptom triggers.  (uncontrollable muscle twisting spasm and rigidity).

Memory of the traumatizing diagnosis disclosure come to me in disjointed fragments: the brightness of the room; the glare of the doctor’s coat; heavy, suspended dread.  “I believe you have Stiffman Syndrome.”  With those two friviolous-sounding words, my life was forever altered by the devastation of an incurable autoimmune neurological disorder — a formidable terrorist.  I listened to the doctor through surreal tunnel vision, trying to emerge my sinking thoughts to focus on an escape, a cure, as my life came crashing around me.

Walking out of the office into the waiting room, I saw the neurologically damaged with new eyes.  I was one of them.  We were all victims of a diagnostic terrorist.  With my future unexpectantly torched, the acrid smoke obscured hope as I listened to my heart silently scream in fear.

There isn’t a cure for Stiff Person Syndrome (SPS).  In 1994, a home computer and Internet was six years into the future.  Three NIH studies for SPS hadn’t been conducted yet.  “Maybe” an experimental therapy will help “if” insurance approves.  I was also given the neuro’s personally published article on Sudden Death, (respiratory arrest) a possible prognosis for me.  The experimental therapy improved my quality of life, but did not give the hopeful remission. . .so far, just one episode of a close respiratory arrest, triggered by emotional duress.

The National 9/11 Memorial is a thing of beauty.  As the American people have not forgotten the atrocity of that fateful day, the Memorial is a testament honoring what was with what will be.

Nineteen years have passed, but September is my diagnostic 9/11.  As I crawled out of the physical devastation of what I was, I have never lost who I am.  My memorial is my life.  Rebuilding is a continual work in progress.  I hope to make it beautiful — make use of every moment and nurture it with affection, tenderness, beauty, creativity, and laughter.

Dedicated to the fallen, the rescuers, our military, and fellow Americans in remembering 9/11.  I want to acknowledge those who live with the devastation of debilitating chronic illness, their loved ones, and the caring health professionals who make a difference.

*9/11 Attacks  (from the History channel.)

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Social Medicine

“A healthy social life is found only, when in the mirror of each soul the whole community finds its reflection, and when in the whole community the virtue of each one is living” ~Rudolf Steiner

Against the muted background of educational health television, a few issues of Neurology Now lay abandoned on unoccupied waiting room chairs.  This was appearance three of my summer medical evaluation tour — four bookings with different specialists in one week.  Scanning the neurologist’s waiting room (backstage) at the other members of this troupe of patients, I selected a seat across from a gentleman with a walker.  Parking ‘Rocky,’ my wheeled gym bag (a surrogate gait aid), I took a seat glancing at a smiling Jack Osbourne on the cover of one of the discarded Neurology Now magazines from the vacant chair beside me.

Smiling at the gentleman sitting across from me, we swapped our diagnostic stories with companionable understanding and nods, occasionally drifting to the normal details of our lives.  As we talked, others auditioning for an optimistic checkup report came filtering in.  A personable lady sat beside him, contributing to our conversation.  I gave them both a business card with my Stiff Person Syndrome (SPS) website and personal contact information.  Neither had heard of SPS.  A mother with her young adult daughter slid in, sitting beside me.  Conversation continued, covering several topics, accompanied with frequent laughter.  It seemed when the door to the examination rooms opened for the next name to be called, a reluctant hesitancy to leave hovered over our animated group.

Losing the gentleman with the walker and the personable lady to their respective appointments, an older couple came in, settling across from the mother, her daughter, and me.  The man walked with a cane while the woman slowly maneuvered a walker.  It was a toss-up who was the patient, maybe a combo?

As the lady began filling out a clipboard of information, her companion began adding his unique and humorous twist to our conversation.  At one point, the woman stopped writing and made mention of her husband who had died.  Feeling more like a familiar happy hour group at a local tavern than strangers in a neurology office, I asked (typical me) the question the mother and daughter were probably wondering … “How do you know one another?”  (They confirmed their curiosity when he replied.)

They are very good friends, neighbors.  She actively participated in our animated conversation after she completed her updated life history, returning the clipboard and papers to the receptionist with a shuffle, step.  Amazing lady — fun, inspiring, and speaks her mind.  She was the patient being evaluated, diagnosed with MS just before her 19th birthday … 50 years earlier!  Neurological hope personified, she touched me!

I had questions on how she managed MS for so many years — the mother of four children!  She shared she always did as much as she could — always.  During her down times, or in bed days, when people call to come over and see how she is doing, her response is… “If you are calling to bring food, a drink, or help with housework, you are welcome.  If you are coming to hover, stay home.”  I laughed so hard; I loved it!

My time in the waiting room was two hours, but it passed so quickly.  I had a wonderful time.  For just a few moments that day, we were a tight-knit community of fast friends, people, not physically challenged patients … mirrors reflecting the virtue of each one as living.

An unexpected surprise…  Connie, the first lady I had given a card to at the beginning of waiting room happy hour, emailed me.  She read my website and blog, making my day with compliments and words of encouragement.  We have plans to meet for milkshakes.

Social medicine.

Strip – Tweeze

“Mid-life is when the growth of hair on our legs slows down. This gives us plenty of time to care for our newly acquired mustache.” ~Unknown

Chaplin[2]Introducing, from the silent film era, Charlie Chaplin, aka “The Tramp.”  Skip the tramp label, but with my midlife upper lip fuzz, I could be Charlene Chaplin.  Considering his heavy eyeliner, my mirror and society would say “tramp.”  Brows are questionable, but I have seen worse in the reality of life . . . Wal Mart excursions.

A midlife Murphy’s Law — out of “beauty” wax — the Sally Hansen lip zip for amateurs.  Dark Shadows — starring my upper lip.  Browsing the shelves at Target, there were numerous products promising to make my lip as smooth as a baby’s behind, but I was skeptical.  Sally was tried and true.

Encountering two sisters in the lady’s hair removal aisle — yes, they have shelves of products — we had an animated discussion on lip hair/lip fare.  Finally, they shared Sally Hansen had the best product in their experience.  So… a scavenger hunt for Sally Hansen Wax for hair removal.  Finally, the last box on a bottom shelf.  We parted on giggles.

I have used this product for years.  Sticking the container in the microwave, I nuked it at the recommended time and setting — still as hard as when I put it in.  I nuked it a second time with the same results.  On a time restraint, I raised the setting and gave it a third nuke.  Still hard.

My Sally Hansen kit came with tiny tweezers (no magnifying glass), an application spatula, and a poke-your-eye-out toothpick to part eyebrows if brave enough to wax those.  I picked up the assault toothpick to poke through the wax surface.  While the surface was still as firm as ice on a frozen river, an undercurrent of hot runny wax splashed out at the poke and landed on my hand.

Cold water set up the molten drops; now for peeling them off.  Pain must have triggered a dementia-type mindset.  I mentally regressed back to pulling colored drops of candy glued to paper as a child.  Pain shocked me back to the present, pulling the wax drops off my hand and scraping the splatter off of the vanity.  Skin remained intact, but I redefined “exfoliation” with that maneuver.

Stirring and slowly nuking the wax to the desired temperature and consistency, I iced my lip with the spatula and lip-zipped my upper lip-line.  Smooth and baby-soft, my kisser was no longer a lip-tickling threat.

Scrutinizing my eyebrows, waxing was not an option nor the teeny tweezers.  I selected my old faithful anglers from the medicine cabinet and began the pluck/plucking.  There should be a warning on the Sally Hansen box…. “Do not sell to minors or anyone over the age of 50!”

I will continue doing my strip-tweeze.  If my few straggling chin hairs ever overpower my tweezers, desperation might consider a cutting-edge change — but there is the concern of slitting my own throat?

I am a middle-aged, disabled diva and loving life!

A Special Lunch

“To know someone here or there with whom you can feel there is understanding in spite of distances or thoughts expressed. That can make life a garden.” ~Goethe

An extremely rare diagnosis of Stiff Person Syndrome (SPS) also comes with loneliness and isolation . . . a never-ending need to explain with only a glimmer of hope for understanding.  My first communication with another person with SPS was via an Internet support group in 2000, six years after my diagnosis.  Euphoria filled the empty void in my life to have an outlet of mutual understanding.  In the following years, I have personally met 24 or 25 individuals with SPS.  While the Internet can be a wonderful communication tool, I still prefer “real life” to virtual.

Jennifer Trednick & I met on Rare Disease Day as participants for the awareness event in our area.  It was coincidence that we both have Stiff Person Syndrome.  Jennifer told me about Kathi Rose, another lady with SPS, suggesting we all meet for lunch.  After some email tag and schedule shuffling, we had a date, place, and time.  Jennifer, Kathi, and I met a few weeks ago — lunch at an upscale Italian restaurant, located in an Emerald City shopping center.  Instant rapport.  Both ladies are intelligent, optimistic, fun, and full of life.  We share the desire to live forward, know the ugly realities, but embrace the possibility of each day.

Over lunch, we shared diagnostic stories, similar symptoms, differing symptoms, physicians, movement issues, off days, good days, and strategies.  Considering the gravity of SPS topics, our animated conversation could have been on the latest fashions, shoe sale, or hair salons to onlooking patrons.  Dialogue was void of self-pity, negativity, or victimization.  Talking with two women who genuinely understood was liberating, validating, and cathartic for me . . . a good time!

In sharing medications, Jennifer pulled out a sheet of paper to take notes on a certain med — similar to scribbling down the ingredients of a recipe — this one for a batch of unhindered movement.  We shared thoughts on coping.  Physically, we all jump through medication hoops and push personal limits, but yield to the flashing SPS stop sign.  Though emotionally painful, cutting toxic people and situations are necessary for health.  Limited ability is on a timer.  Drama, if a choice, gets taken to the curb.  Laughter, positive people, goals, and “doing” are as necessary as medication.

We learned the general personal details of one another’s lives while validating and learning from each other about the cruel syndrome we share — “the tie that binds.”  (Figuratively and literally.)  Shared female laughter and girl-talk made a few appearances into our lunch talk.

Jennifer and I are both insulin-dependent diabetics with insulin pumps.  If I remember correctly, Kathi is borderline.  Diabetes was another topic of conversation.  Sharing included a show-and-tell of one another’s rigid back.

We had our picture taken outside of the restaurant, normal-looking ladies having lunch.  I greatly enjoyed meeting Jennifer and Kathy, two amazing ladies.  When our busy lives align, we hope to get together again.  It was a special lunch.

 

5K – A Run For The Roses

Resting for a week after the 5K, sunshine and mellow temperatures were hard to resist.   I wanted to go for a walk.  Unloading my jogging stroller, the training area greeted me like an old friend.  Aching muscles had recovered but my heart still swelled at the enormity of accomplishment.  In private celebration, I jogged a victory lap.

With the stress of the run behind me, I was able to savor visual details of my running track.  Fuchsia blooms clustered around the pond.  My quacking hecklers weren”t around, a disappointing first.  Stiff Person Syndrome permitted an impressive, though rusty, practice run the week before the 5K.  Out of respect or intimidation, the ducks remained silent or ran from me.  I was hoping they would be a cheering crowd for my victory lap.

Many thoughts swirled through my mind — the tortuous early years, ever-present uncertainty, struggles of training, appreciation for the good, relived euphoria of the 5K.  Stiff Person Syndrome, a rare disabling disease, stole many things from my life.  Crossing the finish line of the 5K was so much more than just a run for me.  It was a moment of victory over years of abusive submission to a cruel diagnosis.  The Donna Deegan 5K was my Kentucky Derby, a “Run For the Roses,” as a lame thoroughbred.

During my victory lap, I pass the tree with a few clinging stubborn leaves.  I see the promise of budding sprouts, making my heart smile.

…And it’s run for the roses
As fast as you can
Your fate is delivered
Your moment’s at hand
It’s the chance of a lifetime
In a lifetime of chance
And it’s high time you joined
In the dance
It’s high time you joined
In the dance —

~Dan Fogelberg

Copyright © 2013

Febrary 28, 2013

Febrary 28, 2013

Racing Against Stiff Person Syndrome

“The miracle isn’t that I finished. The miracle is that I had the courage to start.”
-John Bingham

My limitations with Stiff Person Syndrome made training for the 5K extra challenging, daunting at times, a few days impossible.  Fear was consuming because of SPS unpredictability. Publicly announcing my intent to do the 5K committed me without knowing if the starting line would be approachable that day.

After two weeks of intense anxiety interrupting my sleep, an unexpected calm settled over me the night before the Donna Deegan 5K Run. I drifted off to a peaceful night’s sleep, briefly interrupted by a nocturnal sugar drop.  After a small snack correction, I went back to sleep.

I woke up at 4:30, alert, excited and looking forward to the 5K experience. Packing a backpack with my half case of water (weight stability for my stroller), diabetic supplies, snacks, and medication; my preparation resembled a wilderness trek instead of a city run. One thing I learned from my six weeks of 5K boot camp was having a strategy for optimal food intake and medication timing.

Banter with friends helped keep my mind preoccupied. I felt a connection with the crowd: running in tribute, support, or in memory — several survivors. Though their advocacy was for breast cancer, mine was for Stiff Person Syndrome, Rare Disease Day, and Lulu (breast cancer and SPS).

As the starting time neared, a few jitters started to poke at my well-being. Since I had a jogging stroller, I was delegated to the back of the pack, a sensory relief for me. With my beginning steps, I felt comfortable with the pace, the crowd, with me. As I started to pass the walkers, my confidence grew.

As in my early running days, I entered a mental zone, aware of my pace, in sync with my breathing, focusing on the pavement in front of me. SPS sensitivities often crank up the volume on my sensory intake, but navigating around the crush of people with my stroller was a mental diversion. Agoraphobia was not an issue… just concern over ramming someone in the backend.

A personal competitiveness set in, not against the other runners, against Stiff Person Syndrome. Hitting the second mile mark at 25 minutes, I exhilarated in the possibility of finishing.  Just one time… taking something back that diagnosis had stolen from me. Crossing the finish line was a personal victory over Stiff Person Syndrome for me.

At home, I wept for many reasons, but mostly with gratitude.

Photos – Donna Deegan 5K – 2013

My racing stats:
Gun time:   38:03
Chip time:  37:10

Copyright © 2013

Febrary 28, 2013

Febrary 28, 2013