“Life is what happens to us while we are making other plans.”
~ Allen Saunders

Wonderful vacation plans were made for a week of camping in Tennessee with a prepaid zipline adrenaline rush, waterfall hikes, and the typical tourist explorations. Visualizing toasted marshmallows over an evening campfire tantalized in anticipation.  Then, life…

As a complicated autoimmune patient, I took every necessary precaution.  Masked up, excursions were chosen on safety, guidelines followed, but I was not going to live consumed by fear.  Hand washing, multiple bottles of antibacterial gel, and disinfecting groceries were just a few of the precautions utilized.  Vitamin D, zinc, & C were daily supplements.

I voraciously read articles on the virus, treatments, and especially took note of the comments.  Outside of SPS and another autoimmune disorder, I am also a diabetic…high risk.  With compromised health, understanding all aspects of COVID is vital in living during pandemic times.

Clueless as where I contracted the virus, I started feeling unwell the week before vacation.  Mostly, I was nauseous with a low grade fever.  As with any external health issue, it fed my SPS symptoms and  negatively impacted my blood sugar.  My bestie started having symptoms a few days later.

As a career patient, I had most of the necessary homecare products at home.  Caring individuals kept a close check and grocery delivery was a godsend.  Waiting it out at home was not working.  When a slight cough started, we went to ER.

Social media had created a fear for me regarding ER.  I was of the notion you immediately went into ICU isolation and would possibly be put on a vent.  The ER waiting room only had one individual in there.  We were checked in and taken to a treatment room.  As we were both severely dehydrated, we were given fluids along with meds in an IV.  I watched as my bestie went from dusky grey to healthy pink.

After x-rays, we were given antibiotic prescriptions and discharged.  That visit made the world of difference for both of us.  Feeling the natural fatigue after illness, rest and food gradually brought us back to “normal.”  I am regaining taste and smell.

Greatly disappointed our original vacation plans were derailed to ER and Gatorade, a long weekend provided an opportunity to get away after recovery.  Loading up camping gear, we nabbed the last camping spot at a park – #13!  (Menacing background music.)

The quiet weekend was peaceful and soothing.  And I had toasted marshmallows over a campfire…twice!!

“And into the forest I go, to lose my mind and find my soul”
~ John Muir

© 2021 Debra A. Richardson

#travel
#stiffpersonsyndrome
#diabetes
#COVID
#outdoors

Snake oil is an expression that originally referred to fraudulent health products or unproven medicine but has come to refer to any product with questionable or unverifiable quality or benefit. By extension, a snake oil salesman is someone who knowingly sells fraudulent goods or who is himself or herself a fraud, quack, charlatan, and the like.
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January 27, 2010

January is usually the letdown, slow-moving month after the Thanksgiving to Christmas Tail-Chasing 500. If January was the warm-up lap for 2010, I will be in a rubber-burning race for the year. My goals for 2010: broaden my horizons and expand my abilities…‘in spite of’ chronic illness.

Last week was an interesting mix of people and experiences. In review:

Monday, my friend, “T”, and I attended a meeting of local businesswomen as dinner guests. For $18.00 a plate, we had an anorexic salad, assorted bite size pieces of bread followed by an entrée of petrified meatloaf, (camouflaged with gravy), three bites of mashed potatoes, and two broccoli stems. Dinner quality and portion downsizing were not reflected in the tab. Dessert was a forgettable something.

I will refer to the guest speaker as Dr. ‘Otta.’ His presentation was a yawner sales pitch for natural supplements read from a computer screen with a halting monotone. Dr. ‘Otta’ was offering free consultations. Out of morbid curiosity, I scheduled an appointment for the next day to see what he would say about my rare diagnosis.

T and I were the only patrons in the medical office, but had to wait while a large flat-screen television hypnotized with more promos and miraculous healing endorsements before our tour of the facilities and my freebie consult with Dr. Otta.

T critiqued Otta’s performance as I participated. Dr. Otta’s ‘energy field’ tested mine. (I refer to that as foreplay?) With two fingers on my forehead and touching various spots on my body, Otta hesitated briefly at my heart before dramatically declaring it sound…all without blue smoke and eerie music.

Act two – deficiency testing. Asked to hold a clear bottle with an unknown supplement in my left hand, Otta had me extend my right arm as he pushed down on it. If I could resist his gentle push, I needed the mystery supplement, CMO. When I asked, “What is CMO?” Otta had to refer to the quackpot manual of supplement definitions as it was a mystery to him.

After identifying two deficiencies in my resistant energy field, (potential supplement sales), I started relaxing my arm to Otta’s disgust…no deficiency, no sale. As a solo audience to this pony show, T observed different techniques of applied pressure from Otta.

When Otta realized there would be no curtain call, (return visits), or sale, we were abruptly ushered to the exit. Dr. Otta oughta know what he is peddling, oughta get some ethics, oughta stop playing with people’s lives, oughta drop the Dr.

Thursday. Otta’s energy field verdict of a healthy thyroid was overturned by lab work ordered by my endocrinologist…confirmed DNA evidence. I have Hashimoto’s Thyroiditis. T and I celebrated this addition to my collection of chronic ails with dinner at Applebee’s.

Friday. A very special family lost a sister to cancer. Attending calling hours was a blend of reacquainting, reminiscing, tears, and hugs.

Saturday. I had a book signing in a unique section of town, San Marco. San Marco is an entity to itself, an individual flavor. Engaging the assorted shoppers, diners, and those on a mission was stimulating and fun for us. Strangers share heartache, offer advice, or give an opinion. Saturday blessed me in many ways, rewards from opportunity.

Sharing coffee and conversation at the kitchen table, (affectionately referred to as ‘round table discussions’), T and I recapped the week. Placing the saltshaker in T’s left hand, I told her to raise her right arm. Puzzled, she asked me, “Why?”

“I want to check your sodium levels,” I said to her responding chuckle and headshake.

All my best…

Brother Love’s Traveling Salvation Show

© 2010 Debra A. Richardson

#TBT
#stiffpersonsyndrome
#raredisease
#chronicillness
#opportunists

Heaven’s Very Special Child

A meeting was held quite far from Earth!
It’s time again for another birth.
Said the Angels to the Lord above,
“This Special Child will need much love.

His progress may be very slow,
Accomplishment he may not show.
And he’ll require extra care
From the folks he meets down there.

He may not run or laugh or play;
His thoughts may seem quite far away.
In many ways he won’t adapt.
And he’ll be known as handicapped.

So let’s be careful where he’s sent.
We want his life to be content.
Please, Lord, find the parents who
Will do a special job for You.

They will not realize right away
The leading role they’re asked to play.
But with this child sent from above.
Comes stronger faith and richer love.

And soon they’ll know the privilege given
In caring for their gift from Heaven.
Their precious charge so meek and mild
is Heaven’s Very Special Child.”

~ Edna Massimilla ~
 

God’s Gifts

I gave Him my weakness.  He gave me strength.
I gave Him my worry.  He gave me peace.
I gave Him my doubt.  He gave me assurance.
I gave Him my pain.  He gave me comfort.
I gave Him my tears.  He gave me joy.
I gave Him my bitterness.  He gave me compassion.
I gave Him my anger.  He gave me forgiveness.
I give Him my despair.  He gave me hope.
I gave Him my defeat.  He gave me triumph. 
I gave Him me.  He gave me love.  He gave me life.

© Debra A. Richardson

I WILL ALWAYS LOVE YOU

A tribute to my daughter from my archived website.
© 2008 Debra A. Richardson

#tribute, #motherhood, #SMA-I, #raredisease, #faith

To control the spread of the Corona Virus, COVID-19, we are on a temporary quarantine, “social distancing” to be politically correct.  People are in a panic, hoarding items such as toilet paper, or frustrated at the stall in a busy and unhindered life.  The current social distancing is temporary, but when the restriction is lifted, life will resume in its normal hectic pace.

“Every terrorist regime in the world uses isolation to break people’s spirits.”~Bell Hooks

“Solitude, isolation, are painful things, and beyond human endurance.” ~Jules Verne

In 1994, a diagnosis of Stiff Person Syndrome identified the cruel terrorist who had taken my life captive.  Struggling with my physical symptoms, I began to learn the deeper ramifications of a disabling chronic and rare disease — imposed isolation.  My diagnosis is not temporary, but for life.

Predominantly during my early years, mobility was severely compromised with continual spasms.  Due to my nervous system under constant attack; distorted perceptions of space, touch, noise, and other external stimuli overloaded my sensory circuits.  “Outside” was a definite no-can-do while inside was a crippling comfort.  Under “social distancing” (imposed isolation), I had a lonely peace.

Peace came at a hefty price.  As my friends continued to work and function in the outside world, I was on an indefinite diagnostic house arrest.  Gradually they drifted into obscurity.  As my phone slowly stopped ringing, I immersed in books and old television reruns, waiting for family to come home from school and work.  Waiting.

Often, I refer to the syndrome as a terrorist, stalker. or jailer.  SPS is all three.  Imposed isolation is a dark and lonely existence. You cease to matter, even to yourself.  Within the shadowy darkness of  my confines, I began emulating many isolated prisoners, developing survival techniques for my mind and spirit.  I lived life going through the motions, robotic and obedient.  Dreams wilted with the discouraging reality of my limitations.  Not only losing my health, I lost me, my life.

Emerging from an emotional breakdown in 2010, I began working hard on my long denied spiritual, mental, and physical components of self.  Breaking through some protective walls, I have slowly emerged as a physically-challenged “normal” individual within a time limit.  It will always require a lot of work.

In the abyss of loneliness, I rediscovered Debbie, untapped things within me.  I have learned to appreciate the beauty of a moment, the simple.  Having a deep love for people and social interaction, I have reconnected with others.  I still enjoy my own company.  I find comfort and satisfaction in social distancing, now referred to as my peaceful solitude.

A perspective:

Many are struggling with the COVID-19 social distancing quarantine right now.  It is temporary.  For many of us with chronic illness, imposed social distancing is part of the lifelong diagnosis.  Think of us.

The Sound Of Silence

“There’s a difference between solitude and loneliness.” 
~Maggie Smith

© 2019 Debra A. Richardson

#chronicillness
#stiffpersonsyndrome
#raredisease
#isolation
#socialdistancing

 “Mother is she who can take the place of all others but whose place no one else can take.” ~Unknown

“The love of a mother is the veil of a softer light between the heart and the heavenly Father.” ~Samuel Taylor Coleridge

During my visit with Mom in May of 2018, I knew it would most likely be my last.  As she sat in her rocker/recliner, I would frequently sit on the floor beside her so I could lay my head on her lap…a ritual.  Stroking my hair, she wondered if I could prolong this visit.  There was never enough time with my frequent physician appointments, requiring strategic planning for my visits between appointments.

Her declining health and understandable fatigue in living with her complicated health issues had slowly stolen her joy for life. In spite of our compromised health situations, I managed to rent a wheelchair for her (a gait-aid for me in an emergency).  We enjoyed our favorite lunches out, split “our” desserts, finagled some shopping, and had some of our special girl talks over ice cream and Life Time movies.

A serious and abrupt emergency had me quickly return with a grim prognosis.  In a rebound/setback scenario, emotions ran high for my siblings and me.  In her good moments, Mom was clear in her expressed desires.

Always a genteel southern lady, a “steel magnolia”, my mom gracefully made her exit from this life in her time, her way.

Dealing with deep grief, somehow I was able to handle her affairs.  Due to her advanced age and serious health issues, Mom had not been able to take care of her business like before.  This was a major undertaking, especially as stress and emotions are triggers for Stiff Person Syndrome.  I believe love gives one superhuman strength.  God was my comfort.

It has taken all of this time to get everything settled while submerged in the sadness of missing Mom.  So often I find myself thinking to phone her just to have another wave of reality submerge me again into a heavy nothingness.  She is not there.

I am now experiencing some renewed physical setbacks from the emotional shutdown and my derailed comfort routine of the past several months. I know my siblings and I will never “heal” from losing Mom, but I can refocus and work on regaining lost ground.

In going through papers, I found this birthday card to me, close to my birthday.  The sentiments of the card were a heaven sent message from her, encouragement for me to continue to work hard.

I kept her chair.  At first I did not want it, but now I am glad I have it…so many precious memories.  I sit in it at times. Quiet.  In those moments, I feel her hug me.

Life with a chronic rare disease is hard and all consuming.  It is not the only issue to have to cope. Life has the ordinary common trials, obstacles that come our way; sometimes a heart punch.  I was blessed to have a great role model.  Mom dealt with some difficult life problems, later diagnosed with a differing rare neurological disorder after I received mine.  As always, she handled everything with grace, faith, and strength.  A steel magnolia, my best friend, my mom, forever in my heart. ♥

IF YOU COULD SEE ME NOW

“My mom is a lifelong smile in my heart, her voice a comfort to my soul, her hugs my ladder to the stars.” ~Terri Guillemets

© 2019 Debra A. Richardson

#grief
#mother
#chronicdisease
#raredisease
#stiffpersonsyndrome

“All my life’s problems have one simple solution, a hug from my daughter.” ~Unknown

“A daughter is God’s way of saying “thought you could use a lifelong friend.” ~Unknown

November 17, 2006

It doesn’t happen often, but sometimes I dissolve in an emotional meltdown.  Yesterday was such a day.  Living each day working with and around symptoms, remembering medications and a merry-go-round of medical appointments, while absorbing the frenzy of a hectic family schedule, knowing in spite of my physical limitations so much depends on me.  The enormity will sometimes cause my knees to buckle and I fall into a sobbing  heap of frustration.  The consuming energy in living a life with SPS, I feel like I lose me.  I cried, “I matter.”

After an occasional pity purge, I can renew my “hutzpah,” regroup, and refocus.  In unexpected ways, I am reminded I do matter and others do see my struggles.  My daughter wrote the following poem for an English class.  Unknowing of my previous upset, she gave breath to my weary soul.

The Internal Fight

You with the crooked spine
You will always be considered mine.
I know you have an internal illness,
You fight it every day.
I don’t know how one can deal,
When so much fright is thrown your way.

I loved you before,
I know I love you more,

You nurtured me young,
I shall nurture you old.

I know you feel pain,
And its such a big problem.
I look up to you mom,
I know you will make it work.
Your eyes are still wild,
Like your body sometimes is.
Spiderwoman on the wall,
Who can cling best of all?

My mommy can,
best lady of them all.

  A Mother’s Prayer

© 2006 Debra A. Richardson

#raredisease
#chronicillness
#stiffpersonsyndrome
#loveofachild
#coping