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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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