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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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Hand In Hand – Rare Disease Day

Rare Disease Day - February 28, 2013

Rare Disease Day – February 28, 2013

“The way you get meaning into your life is to devote yourself to loving others, devote yourself to your community around you, and devote yourself to creating something that gives you purpose and meaning.” ~ Mitch Albom

“As we work to create light for others, we naturally light our own way.” ~ Mary Anne Radmacher

I have Stiff Person Syndrome, a diagnosis that afflicts one in one million.   It is estimated there are 300, possibly 400, individuals in the United States with SPS.  We are a very small community in the definition of “rare.”  A rare disease is categorized as a diagnosis of fewer than one in 200,000.  There is estimated to be 7,000 rare diseases.  (NORD information)  Collectively, one in ten individuals has a rare disease — 30 million Americans.  Living with social misunderstanding and isolation, finding knowledgeable healthcare, and facing daily struggles and challenges are issues I share with everyone diagnosed with a rare diagnosis, not just Stiff Person Syndrome.  We are the Rare Disease Community.  Together we are strong.

Jacksonville Landing - Inside Display

Jacksonville Landing – Inside Display

February 28, 2013 was very special to me.  I was involved in Rare Disease Day.  From my personal endeavor of running a 5k and honored as a guest blogger for the NORD blog (National Organization for Rare Disease), I participated with others in my area on the 28th.  Cynthia did an amazing job organizing the first-time event.  Meeting another individual with Stiff Person Syndrome was an unexpected and rewarding experience.  Sharing was an encouragement for each of us in the group along with being informative for interested onlookers.

Knowing other groups/individuals, world-wide, were doing an outeach of awareness knitted us into a global fabric of unity — one voice.  Hear us, see us… understand, care.  In Washington DC, the Rare Disease Legislative Advocates (RDLA) had several days of hearings on our behalf.  To be a participant, in the equivalent of The Rare Disease Olympics, gave purpose and meaning to my diagnosis.   With thoughts swirling in my mind for next year and the months leading to it…

Hand In Hand

Hand In Hand

Copyright © 2013

Dedicated to the Rare Disease Community — Olympians, every day, with every breath.♥

National Day of Action For Chronic Pain

apf

American Pain Foundation
A unified voice of hope and power over pain.

First Annual National Day of Action
Saturday, Sept. 26th, 2009

Along with several well-known disorders, many rare and difficult-to-diagnose disorders share the symptom of chronic pain. September is invisible illness awareness, but it is also the month for pain awareness.

Check out the American Pain Foundation’s website to see what they have accomplished, their goals, and how you can help.

Fox & Reeve

“A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles.”
~Christopher Reeve~

“One’s dignity may be assaulted, vandalized and cruelly mocked, but cannot be taken away unless it is surrendered.” ~Michael J. Fox~

I met Christopher Reeve and Michael J. Fox on ‘big screen’ dates with my son. Superman II had his four-year-old face flushed with super-hero excitement and mine with female appreciation of Reeve’s crystal baby blues.

Pizza Hut and Back To The Future was another mutual date-night hit…Marty McFly, time travel fantasy mixed with action, comedy, and romance, topped with mushrooms and pepperoni.

I loved both of these actors, experiencing the thrill of the stories and characters they portrayed, a pretend world where good always overcomes evil. Fate dealt both actors a cruel blow…a tragic accident, a cruel diagnosis…indiscriminate reality.

Good may not always overcome evil, but attitude, purpose, and perseverance can. I watched both actors live as the heroic men they were/are…megastars of hope, encouragement, and courage. Living my own tragedy, I became a raving fan.

I listened to Reeve’s candid interviews and future visions. With my SPS symptoms, I can relate to frozen immobility, understand a world with wheels. Some of my SPS pals need a chair. A picture of Christopher and his son are displayed by my computer…a reminder of what ONE can do ‘in spite of’ adversity.

Fox speaks about his progression of Parkinson’s, the loss of mobility functions, and planning activities around medication peaks. I plan my day around my prescription windows of opportunity.

Both men inspire me with their candor, hope, and advocacy. Celebrity status has given both men a stage to showcase everyday heroes who live with physical or mental challenge, a spotlight on needed research for the dark world of disabling conditions.

Christoper Reeve’s hope lives on through his foundation. Michael J. Fox has the largest Parkinson’s nonprofit. Fox has an upcoming television special:

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Michael J. Fox: Adventures of an Incurable Optimist airs Thursday, May 7 on ABC.

“For everything this disease has taken, something with greater value has been given,” Fox says. “So, sure, it may be one step forward and two steps back, but after a time with Parkinson’s, I’ve learned that what is important is making that one step count.”

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““You’ve got to give more than you take.”
~Christopher Reeve~

“I am careful not to confuse excellence with perfection. Excellence, I can reach for; perfection is God’s business.”
~Michael J. Fox~

Copyright © 2009