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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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Tough Mudders

“Obstacles don’t have to stop you. If you run into a wall, don’t turn around and give up. Figure out how to climb it, go through it, or work around it.” ~Michael Jordan

What is Tough Mudder?  As The Premier Obstacle Course Series In The World, Tough Mudder events are hardcore 10-12 mile obstacle courses designed by British Special Forces to test your all around strength, stamina, mental grit, and camaraderie.

The Pledge: (three of the statements)

As a Tough Mudder I pledge that…

* I understand that Tough Mudder is not a race but a challenge.

* I help my fellow Mudders complete the course.

* I overcome all fears.

“The dogmas of the quiet past are inadequate to the stormy present. The occasion is piled high with difficulty, and we must rise with the occasion. As our case is new, so we must think anew and act anew.” ~Abraham Lincloln

Recently, I became familiar with Tough Mudder at the gym.  Kevin, one of my gym buddies, was training hard for it and explained a little about the event to me.  *A group, from the gym, were participating together.  (Congrats on their finish!!)  If you have made it this far through my post, you are probably wondering, What does this have to do with Stiff Person Syndrome?

A lot of effort and training goes into participating in the challenges of a Tough Mudder, but participation is a choice.  A diagnosis of Stiff Person Syndrome is a daily (24/7) challenge with an unpredictable, always changing obstacle course.  Participation is never a choice.

The video of a Tough Mudder course is very much what a day of living with SPS can be — a neurologically-challenged body struggling against the physically-distorted reactions of visual perception, the energy/effort required to do the simple, often requiring a helping hand — a grueling obstacle course in the normal world of ordinary and mundane.

During my early years, regressive days or times, I have slid down stairs on my stomach, body rigid and trembling in spasm, drenched in sweat from exertion.  Maneuvering around scattered toys/items on the floor can be equivalent to navigating a minefield.  Crawling through the house, I look(ed) for handholds, footrests, plan a strategic move to round a corner.  With SPS, public outings have morphed into overwhelming challenges at the whim of syndrome symptoms.  The world takes on the appearance and physical grit of a Tough Mudder competition.

Syndrome spasms have twisted my torso muscles, much like wringing a dishrag — hijacking my ability to negotiate mobility release.  Injury from unforeseen body-slam falls becomes a defensive consideration in every move.  Pain is variable, but present every day.  The SPS Mudder is not 10 or 12 miles with a finish, but for every moment, of every day, for life.  There isn’t a training guide for living with the challenges of SPS, nor any debilitating diagnosis.  Training is learned as you live.  I liked three of the statements of the Tough Mudder pledge as they personally pertain to some of my coping strategies.

I cannot compete against the person I was before diagnosis, “not a race but a challenge.”  I can only be the best with who I am now.  “One day at a time.”  It takes a lot of work, determination, endurance, and positive mindset . . . (“strength, stamina, mental grit“).  It is extremely difficult living in a fickle body.  Last week….

For some syndrome mystery, pain was high and ability was low.  Sunday climaxed into a torso lockdown at the grocery.  Leaning on the cart, I managed a slow shuffle, my weight entirely on the cart, as my back arced in the familiar painful contraction of restraint.  Focusing on deep slow breaths, with attempted mind diversion of songs to calm visual overload, I managed to slowly shuffle/slide to the car . . . an accomplishment. Hoo-Rah!

Tuesday, I packed a lunch to take “Leon,” my jogging stroller, for a walk and picnic, outdoor therapy.  My short-circuited SPS nervous system unexpectantly connected?  I was able to trot an easy five miles . . . an accomplishment.  Hoo-Rah!

I can’t say I’ve overcome all fears.  Stiff Person Syndrome has a grim reality that I work hard to face with faith and optimism on a daily basis.  (Sunday was also an emotional challenge.)  I have some beloved syndrome friends (syndrome mudders) who are an encouragement to me many times, an outstretched hand of team support.  Hoo-Rah!

I loved watching the video of the Tough Mudder, the smiles and thrills of accomplishment.  I understand euphoric victory in overcoming a challenge.  My heart smiles at the thrills of my accomplishments, if just pulling weeds, tying my shoes, or jogging with “Leon.”  Hoo-Rah! 

Dedications:

To our nation’s finest and bravest, with loving gratitude — America’s Military.  The Tough Mudder raises money for The Wounded Warrior Project.

Often, I will use soldier and war analogy in describing life with Stiff Person Syndrome.  Living with a disabling disease is a life of front-line combat and the diagnosed are casualties.  To my SPS comrades — thank you for your encouragement, inspiration, and support.♥

*To my gym buddies — thank your for the smiles, fun, understanding, and helping hands.  “Hoo-Rah” for finishing the Tough Mudder!

We are Tough Mudders!

“It’s not what you can’t do, it’s what you can do!” ~ From The Wounded Warrior Project

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.♥

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

Not Old Enough

January 2, 2012

“There must be a day or two in a man’s life when he is the precise age for something important.”
~Franklin P. Adams

Back in “my day,” turning 18 was epic–old enough for emancipation from parental rule, to legally buy and drink 3.2 beer, and to vote. Twenty-one was eagerly anticipated by the 3.2 beer crowd wishing to try the harder things in life. Overachievers.

In my early 20s, talk of retirement seemed an eternity away and pointless. In retirement visions, I pictured myself tanned and stylin’ on a tennis court with a handsome senior man, without wrinkles, firm, and athletic. Imposed early retirement was a brutal reality smack-down with my SPS diagnosis at 36. I lost my dream of the tennis court and celebration for turning 65 with a party from my co-workers, complete with presents.

The next milestone was qualifying for an AARP card and all of the membership advantages of turning 50–once again getting ‘carded.’ Deja vu, with beginning wrinkles.

I received some information in the mail about a very interesting social/intellectual/exercise program for individuals 55+…not quite ‘old enough.’ I am going to check into it anyway. Just a minor technicality, I turn 55 this year.

I am not old enough to be racking up the equivalent of cha-ching bonus points on a prescription card, watch older women walk effortlessly in a mall with envy, or have my social calender filled with doctor appointments. Nobody is.

Chronic illness or rare disease is non discriminating regardless of age, ethnicity, beliefs, or gender. NORD, (National Organization For Rare Disease), is our change.org.

Copyright © 2012

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.