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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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SPS Mother – Love Shows The Way

“Mother love is the fuel that enables a normal human being to do the impossible.” 
~Marion C. Garretty, quoted in A Little Spoonful of Chicken Soup for the Mother’s Soul

“When you are a mother, you are never really alone in your thoughts. A mother always has to think twice, once for herself and once for her child.” ~Sophia Loren

I always wanted to be a mother, loved raising my children, still love being a Mom.  My second child, my oldest daughter, was born with a terminal, genetic, neurological disorder, no medically known association with Stiff Person Syndrome.  I refer to her as my “shooting star.”  Her short life taught me patience, joy in the simple, appreciation for ordinary, and to cherish the moment.  My faith was strengthened.  With her death, I experienced profound loss.  She helped prepare me for living with Stiff Person Syndrome on many levels, except how to be a disabled mother.

When I was diagnosed, my son was seventeen, almost grown.  My youngest daughter was only four, still needing a “hands on” mother.  Grief and fear were part of my emotional shock at diagnosis, not just for myself, but for her.  How was I going to be an effective mother when I could not walk, barely crawl while in continual spasm?

In my website, Living With Stiff Person Syndrome, I share a pivotal moment.  From the car, I watched my little girl struggle to open the heavy preschool door during a rain until a schoolmates’s grandmother opened it for her.  As drops of rain trailed down the car windows, tears streamed down my cheeks . . . unfit.  Back home, I struggled into the recliner.  I prayed, cried, and thought of how I was going to mother my youngest child.  Love will show the way.

Not one of my children came with a “how-to” manual.  It was a learn as I go.  I was young and inexperienced with my son, religiously followed healthy baby guidelines that are now outdated.  With my second, learning/implementing medical procedures for her care, while coping with my son’s and my emotions were daily challenges.  Love showed the way.  With my youngest, I started thinking about how I could mother with a limited body.  Imagination is wonderful and has no limits.  It was day by day, struggle by struggle, wonder by wonder.

Books, movies, Barbie mall, beauty shop, doctor, dentist . . . we laughed and played.  “In spite of ” SPS, I greatly enjoyed my daughter.  She did not see my limits.  She only saw me as Mommy, her everything.  She made the syndrome magical in some ways — spasm was “spazzle.” Scooting down the stairs on her behind, she told me she wanted to have fun, “just like Mommy.”

As she grew, love not only showed the way; love made a way.  In a parody of a spy thriller dodger, I would slide against walls, look for vertical tangible support with some sort of gait aid to attend her school functions solo.  She was never ashamed of me, always thrilled for me to show up.

I did not discuss SPS with her much, just answered the few questions she may have had.  Considering the personality of my youngest child, that is saying a lot.  She did observe though.  Recognizing distress, she learned at an early age how to help me.  In many ways, my SPS was an unforeseen blessing/teacher in her upbringing.  Strong and individually unique, she has an understanding heart, deep compassion, and wisdom; but zero tolerance for deliberate ignorance.

Now, she is a young woman with a family.  I am in awe of her capabilities.  My worried tears of so many years ago are now tears of pride.  Since she grew up with my SPS, more than anyone in my life, she understands a potential trigger for my symptoms and instinctively knows how to aid me — shopping, hikes, neighborhood walks — finely tuned in to any quiver, startle, or stumble from me.  As I held her hand when she was little, I still hold on to her for stabilization as an adult.

My children, my jewels from heaven.  My son, my firstborn, is an accomplished man.  To quote my son, “We did alright, Mom.”  My second child, my angel baby, taught me so much about God, life, and myself during her brief life.  My youngest, my blessing, gave me reason to live forward with the onset of Stiff Person Syndrome.  With the innocence of childhood, she walked a difficult road with me. Through her eyes, she saw me. 

To my children, who only see the best in me because they are the best of me.  With all my love.♥

                                                                       

An Ordinary Day

Uptown Girl

Uptown Girl

“I am an ordinary person who has been blessed with extraordinary opportunities and experiences. Today is one of those experiences.” ~Sonia Sotomayor

Yesterday was appearance two of my winter medical tour.  (Tickets on Ebay.)  I had an 11:45 in the city.  Morning routine: meds, bloodcheck, quiet devotional time, coffee while chatting with my mom, and breakfast.  Made the bed, showered, dressed, & did the female public spoofing — on schedule.

Medication eval, time for mid-morning meds and (ominous hush), the interstate.  Though not taught in highschool driver’s education, I quickly learn interstate/rush hour sign language.  Carmen, my nagging garmin, always argues with me over the restructured city infrastructure.  Crankin’ out some rock n roll oldies, Carmen whines “recalculating,” in a repetitive stutter as I veer onto the short exit to an abrupt stop at the medical practice.

With pride, Rocky (my wheeled gym bag), and Frac (one of a set of hiking poles), guide me by my lonesome across the drive to the door.  (With SPS, a solo entrance is always a surprise!)  I sign in just to be told I am two hours early and cannot be worked in.  Stiff Person has taught me to be flexible.  I move the ‘after’ Wal Mart visit to the two-hour wait slot to also include a Mickey D’s desperation lunch.

Cities have everything but a Wal Mart.  Getting directions to the closest one, I travel to an unknown suburb 15 minutes away.  Hastily eating my lunch, I’m off in an SPS version of a shopper’s grab race to collect the items on my list.  Locating one of three open lanes of twenty, I check out and make it back to my appointment, listening to Carmen’s protests again.

A beaming physician comes in with my two-inch chart.  I aced all my labs.  (Still have my triple diagnoses though.)

Some interesting conversations, five-minute friends, from my day:

+ I met a woman outside of the office with a rare disorder(s).  Upbeat, we talked shop and I was actually familiar with her meds.  Fast friends.

+ Bantered with the elevator people, always do.

+ One of the building’s security personnel was downstairs and walked me to my car.  He is one of my regular ‘walk and talks.’

+ Was included in some inside employee intrigue at Wal Mart with the cashier and an employee off the clock.

Feeling thankful for my lab results, I chose to avoid the rush of the interstate with a leisurely drive through the quieter city streets, absorbing the magnificent buildings, intricate bridges, glistening water — later the antebellum homes of the historic area.  Yielding to a needed caffeine boost, it was another McDonald’s stop for an iced coffee to continue my drive and ‘high five’ day.

Another med eval and bloodcheck.  Having weathered a few rough days, I thought a gym visit might help loosen things up.  After initial objections, my body responded in unison with my mind.  To compensate for the earlier unhealthy fast food lunch, supper was a Mt. Everest gourmet salad.

Fatigued and in pain, I was feeling the physical effects of a busy day.  Filling the tub with hot water and scented soap, a music channel soothed my senses as the steaming soak relaxed my body.  The heated electric blanket on the mattress beckoned as I slid between the covers.  I went to sleep happy, at peace, and with a prayer of thanksgiving on my lips.  I cherished what many would consider “an ordinary day.”

Love Is All Around (Theme Song from The Mary Tyler Moore Show)

Copyright © 2013

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2013 – A Year Of Firsts

JamieLeeCurtis

Rainy Day Books

“The only failure is not to try.” ~Debbie

“Success is a ‘try’-angle.” ~Debbie

I slid into 2013 from a very hectic and rewarding ending to 2012.   Jamie Lee Curtis was on television discussing her new children’s book.  I fell in love with the book’s title, becoming my resolutions for 2013 — a year of “firsts.”  Giddy with the possibilities swirling in my head, common sense negotiated on a minimum of six.  As always, the unpredictable elements of having SPS & brittle diabetes is a hovering storm cloud over my sunny dreams, but it makes for an interesting life. (!??!)

Balance was key in selecting my goals — physical challenge, mind stimulation, spiritual growth, life experience.  January quickly passed working on a physical challenge.  SPS unpredictability makes completion a Vegas bet.  “The only failure is not to try.”  On a friend’s invitation, I was introduced to an unexpected mind stimulation.  I absolutely love it and look forward to future meetings, the possibilities.

I hope to explore some cultural avenues.  Sharing a mutual love for the outdoors, a playing in the dirt buddy asked me, “Why?”

My answer was, “Life is a buffet.  I want to taste different things.”

Recently I bought a very unique hourglass.  It is fascinating to watch the sand slowly sift in the beginning to a rapid sinkhole as it empties.  With a flip, I can watch it empty again.  Life is not an hourglass.  I do not get a second flip when the sand empties.

I am excited and a little anxious about this year — “tries, sighs, and high fives.”  In an evening celebration, I turn on an oldies music channel on the television and light a scented candle.  I fire up the grill to cook steak, medium well coupled with a salad.  Toasting life, my life, I take a sip of a great Merlot, thinking about where I have been and where I am going.

As 2013 unfolds… “step by step; day by day.”

“To get through the hardest journey we need take only one step at a time, but we must keep on stepping.” ~Chinese Proverb

Copyright © 2013

In Vein

December 21, 2011

“I am not in the giving vein to-day.” ~William Shakespeare

During a gym workout earlier this week, I noticed the bulging veins on the young man beside me on the bicep curls equipment. Looking at my arms, I notice the same bulging veins. I also notice the telltale lumps from over two decades of poke and prod from my blood lab-work.

Receiving infusions since 1994, not to mention several blood checks from various labs from my ‘team’ of specialists, I am thankful I am still keeping vein access below my elbow without needing a port. In the last two weeks, my veins have been accessed four times, but who is counting? If I were a blood donor, I would qualify for honorary status, extra cookie, juice, and a t-shirt.

Maybe I will have a t-shirt made with Will’s quotation for my infusions and lab-work.

Just a random thought from a wandering/wondering mind.

Copyright © 2011