"Oh the pain, the pain." Dr. Smith
Lost In Space (1965-1968)
How to describe triggers for my symptom flares for SPS, (Stiff Person Syndrome). SPS is as sensitive to everything/anything as an anemic first-day menstruating female vampire, after a month-long starvation diet, during a full moon on crack--craving blood--mine!
This week, my SPS trigger was weather. Nothing drastic, just a slight drop in temperature and my body rebelled in symptomatic pain. Not quite the sharp stabbing kind, but the continual throb of an at the barely endurable ache of my back muscles, neck, and shoulder joints. Movement was more labored, but was a doable compared to the continual water drip torture type throbbing.
Lounged in my pajamas for the day, laid on my warm electric blanket, moved to the recliner, & tossed Aleve like breath mints. My thoughts and prayers went to those whose experiences were relentless acute pain without relief from prescription pain meds, feeling some gratitude with my temporary discomfort--I hoped.
I had two rough days, a day of letting up, and today is a residual of earlier in the week. I am grateful.
Recently I watched Forrest Gump again. The scene where Forrest and Jenny are married, holding hands and walking comes to mind. In looking at the ugliness of her childhood home, memories of the abuse she endured there manifest in anger as she picks up rocks and repeatedly throws them at the house to collapse in tears on the dirt path in emotional pain.
My house of abuse would be SPS, ugly, dilapidated, the destruction of my physical health. At times I get angry; I cry; and I cope. I throw meds down my throat, as prescribed, in an effort to subdue SPS symptoms. As with Jenny, throwing rocks is just a temporary solution. Daily I work on coping, but there are days...
"I guess sometime there just aren't enough rocks." ~Forrest Gump
Copyright © 2011
Friday, December 30, 2011
Monday, December 26, 2011
Winter Finals
"My school was so tough the school newspaper had an obituary section."
~Norm Crosby quotes
SPSU, Stiff Person Syndrome University, is equivalent to Harvard graduate school if diagnosis was classified as a medical "School of Hard Knocks." I won a full scholarship with my very high antibody score and impressive EMG results. My final clinical evaluation cinched acceptance.
There are a few fine print guarantees:
1) Graduation upon death, but with highest honors.
2) Lifetime member of the SPSU sorority, Delete Yo *Gamma, DYO.
3) 24-hour homework every day.
4) Year-round finals and labs.
This year, my labs were my year-end finals. Back-to-back, different tests, several different docs, some new courses--my stack of test results and orders got thicker with each week. Anemic by my last blood workup, the tech sported a DNA splattered "Got Blood" shirt, smiling at me with pointed eyeteeth. I was delirious from all the cramming and lack of blood-flow to the brain.
All of my results are in. I aced most of my tests, registering in the coveted and prestigious "normal" range or close. With SPS, physical mediocrity is a coveted Dean's Award of healthy. I lost privileges to the SPSU Christmas bonfire, but I have enough scars from previous scorchers.
I am on a coveted Christmas break until the first of January, when classes resume...
"I was thinking about how people seem to read the Bible a whole lot more as they get older; then it dawned on me - they're cramming for their final exam." ~George Carlin
Copyright © 2011
*GABA is an acronym for gamma-Aminobutyric acid, the chief inhibitory neurotransmitter in the central nervous system. My body's braking system derailed with a demented mind of its own with Stiff Person Syndrome. Girl gone wild without spring break?
~Norm Crosby quotes
SPSU, Stiff Person Syndrome University, is equivalent to Harvard graduate school if diagnosis was classified as a medical "School of Hard Knocks." I won a full scholarship with my very high antibody score and impressive EMG results. My final clinical evaluation cinched acceptance.
There are a few fine print guarantees:
1) Graduation upon death, but with highest honors.
2) Lifetime member of the SPSU sorority, Delete Yo *Gamma, DYO.
3) 24-hour homework every day.
4) Year-round finals and labs.
This year, my labs were my year-end finals. Back-to-back, different tests, several different docs, some new courses--my stack of test results and orders got thicker with each week. Anemic by my last blood workup, the tech sported a DNA splattered "Got Blood" shirt, smiling at me with pointed eyeteeth. I was delirious from all the cramming and lack of blood-flow to the brain.
All of my results are in. I aced most of my tests, registering in the coveted and prestigious "normal" range or close. With SPS, physical mediocrity is a coveted Dean's Award of healthy. I lost privileges to the SPSU Christmas bonfire, but I have enough scars from previous scorchers.
I am on a coveted Christmas break until the first of January, when classes resume...
"I was thinking about how people seem to read the Bible a whole lot more as they get older; then it dawned on me - they're cramming for their final exam." ~George Carlin
Copyright © 2011
*GABA is an acronym for gamma-Aminobutyric acid, the chief inhibitory neurotransmitter in the central nervous system. My body's braking system derailed with a demented mind of its own with Stiff Person Syndrome. Girl gone wild without spring break?
Wednesday, December 21, 2011
In Vein
“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
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
I Have A Name--Debbie
"You were born an original. Don't die a copy." ~John Mason
Some may call it a midlife crisis when you reach 50 and begin redefining your life for your encore. My life crisis came at 36 with a chronic life-altering diagnosis, life sentence, of Stiff Person Syndrome.
With that diagnosis, I lost my life, identity, and future to be tossed on the self-deprecating heap of "disabled" humanity. My beloved role of mother became more than a facet of me, but my reason for living. As a wife, I devalued myself as being "indebted," a worthless burden, losing self-respect, love of self, sense of me--rebounding into a familiar comfort role.
Finding purpose in my affliction, I immersed myself into an outreach of hope and encouragement to others. Commendable, but I was drowning in my diagnosis, ICD-9 code 333.91. My name was secondary to various aliases, i.e. chart numbers, in several states under several specialists.
I had ceased to dream for my future, focusing on making the dreams of others a reality. As the body dies without nourishment, so the spirit will die without vision. In moments of self awareness in a double dip depression, I immersed from the engulfing depths to gasp breaths of me--Debbie: a person, a woman, an individual. My midlife awakening.
A favorite quotation of mine is from Eleanor Roosevelt, "No one can make you feel inferior without your permission." I became angry with me for allowing my life, me, to become irrelevant second to the needs of others, living to please, unfaithful to myself. A revelation: The cost of 'presumed' security was too high.
I had willingly laid my life on a sacrificial alter. By choice I reclaimed my life. I had companions, consuming fear, no plan, unresolved pain, & my health issues. I also had my faith, determination, and prayer.
I spent a year of gut-wrenching resolution, still work on issues. I do live with a loaded gun at my head. SPS has an itchy trigger finger.
I lived so many years within my roles and as a career patient, I had (am) relearning who Debbie is. Painful, exhilarating, uncertain, exciting--I am reacquainting myself with me, liking who I am and the person I am becoming. I have a name--Debbie.
I have a song--my life. I am the only one who can sing it. I have dreams, yet to be disclosed goals. A promising future entices with the fears of my reality but life is lived forward..."in spite of."
Copyright © 2011
A song that resonates.
Some may call it a midlife crisis when you reach 50 and begin redefining your life for your encore. My life crisis came at 36 with a chronic life-altering diagnosis, life sentence, of Stiff Person Syndrome.
With that diagnosis, I lost my life, identity, and future to be tossed on the self-deprecating heap of "disabled" humanity. My beloved role of mother became more than a facet of me, but my reason for living. As a wife, I devalued myself as being "indebted," a worthless burden, losing self-respect, love of self, sense of me--rebounding into a familiar comfort role.
Finding purpose in my affliction, I immersed myself into an outreach of hope and encouragement to others. Commendable, but I was drowning in my diagnosis, ICD-9 code 333.91. My name was secondary to various aliases, i.e. chart numbers, in several states under several specialists.
I had ceased to dream for my future, focusing on making the dreams of others a reality. As the body dies without nourishment, so the spirit will die without vision. In moments of self awareness in a double dip depression, I immersed from the engulfing depths to gasp breaths of me--Debbie: a person, a woman, an individual. My midlife awakening.
A favorite quotation of mine is from Eleanor Roosevelt, "No one can make you feel inferior without your permission." I became angry with me for allowing my life, me, to become irrelevant second to the needs of others, living to please, unfaithful to myself. A revelation: The cost of 'presumed' security was too high.
I had willingly laid my life on a sacrificial alter. By choice I reclaimed my life. I had companions, consuming fear, no plan, unresolved pain, & my health issues. I also had my faith, determination, and prayer.
I spent a year of gut-wrenching resolution, still work on issues. I do live with a loaded gun at my head. SPS has an itchy trigger finger.
I lived so many years within my roles and as a career patient, I had (am) relearning who Debbie is. Painful, exhilarating, uncertain, exciting--I am reacquainting myself with me, liking who I am and the person I am becoming. I have a name--Debbie.
I have a song--my life. I am the only one who can sing it. I have dreams, yet to be disclosed goals. A promising future entices with the fears of my reality but life is lived forward..."in spite of."
Copyright © 2011
A song that resonates.
Monday, December 19, 2011
Camping - 100% Chance of Rain
"It always rains on tents. Rainstorms will travel thousands of miles, against prevailing winds for the opportunity to rain on a tent." ~Dave Barry
In October, a girlfriend and I decided to break from the normal shopping, lunch, and movie outings to go camping. The distant rumbling of a storm began with our deviation from the mall sale racks to Sports Academy for fire starters. It poured rain that day.
Perfect planning--from meals, (homemade chili), gear, her trunk filled with $30.00 worth of firewood, to emergency rolls of toilet paper. Thinking of everything, we staged our two-day supplies in her dining room the day before, leaving wiggle room around her table.
After our successful tent-raising, we unloaded our cooler, dry goods tote, and lanterns onto the picnic table. Salivating over the evening's dinner of chili & s'mores, the first drops of rain started to fall in defiance to the clear weather forecast.
During a steady gentle rain, we started a fire. Wet drops ran down the hood of my raincoat while I licked oozing melted marshmallow and chocolate from the rim of my squished graham crackers. Looking at my girlfriend, I started laughing at the chocolate dripping from her lips. The humor of the situation took hold of me as I said to her, "We have redefined desperation...two middle-aged women in the soaking rain for a chocolate fix."
Marauding racoons pried the lid off of our dry goods tote twice, swiping our treasured cinnamon coffee cake among other white flour treasures...gluten-holics, not healthy. My friend had a leaking air mattress, nocturnal bathroom breaks, soggy paper towels, & a resistant fire start on the dry second night were a few of the minor and humorous challenges of our outdoor adventure.
Stiff Person went with me along with diabetes as always. My hiking pole helped me navigate gnarled tree roots along the ground, perception and obstacle triggers. Marauding symptoms stayed hidden, leaving the lid on my well-being tote fastened, contents undisturbed. I changed my insulin pump plumbing to fresh air and sunlight, disinfecting with antibacterial gel.
It was a great time--nature, food, quiet, friendship, and we burned the entire trunk of firewood. Though prepared, we did not need our emergency toilet paper.
"In spite of"...Life is still about moments like this.
"Night, the beloved. Night, when words fade and things come alive. When the destructive analysis of day is done, and all that is truly important becomes whole and sound again. When man reassembles his fragmentary self and grows with the calm of a tree." ~Antoine de Saint-Exupéry
Copyright © 2011
Saturday, October 8, 2011
Nature's Castle
"Everybody needs beauty as well as bread, places to play in and pray in, where nature may heal and give strength to body and soul." ~John Muir
A rainy Saturday. A free afternoon. My girlfriend and I decide to go shopping and have lunch. Lunch involved a carb and fat laden order of fried onion rings, loaded cheeseburger, and a DQ Flurry. Shopping involved...sporting goods.
Big Lots yielded a budget pleasing candy assortment for a church Halloween project and a stash for each of us. Assorted scented candles, discounted DVDs, and decorative housewares held our browsing attention for awhile. Finally asking an employee we were told, "No camping supplies."
Across the road was a sportsman's store. Passing the athletic wear and hunting gear, we located camping supplies in the back corner. Once again, cha-ching paydirt--tents on sale. I bought one, a four-person occupancy. (Room for me and my autoimmune trio.)
We decided to set the tent up to see how difficult it would be. My front room wasn't quite large enough, but it was bigger than hers. In the process of our Amish-style tent raising, we thought the tent was missing a piece. Back out into the rain and the sportsman store we went. Enamored with my tent, my friend decided to buy one for herself.
Just when I think my SPS is going to behave, as I am clinging to the purse on her shoulder for balance, walking in the rain, and holding my tent box; it starts to slide out of my arm, triggering my back to do the familiar lock, quiver, almost fall down. In panic mode, I call out; she stops, takes my tent, and we somehow manage to awkwardly lumber back to the car, safe but soaked again.
She does a quick inventory of the contents of her tent before she heads home. I decide to try to put mine together. (Menacing background music.) After two sugar hypos, some awkward SPS moves trying to anchor a 4-man tent on carpet in limited space, I have a "loose" idea what my nature castle will look like, admiring the shiny fabric.
Excited, I can envision the healing silence of nature, taste the crispy melted marshmallows, hear the pop of a crackling fire, and picture a plugged in coffee maker for morning java. Camping within my comfort limits of SPS, I anticipate winter exploration in a warmer climate with friends.
To be continued...
Copyright © 2011
The SPS Circus
“We are in the same tent as the clowns and the freaks-that's show business.”
~Edward E. Murrow
September was my fall tour, visiting all of my specialists in four weeks with a grand finale--my scheduled booking at the oncology clinic for my monthly infusion of IVIg. Complimentary concessions included crackers and juice to toast my yawner of a performance due to a double dose of pre-poke Benadryl.
Before my Benadryl rendition of Goodnight Sweetheart, I tried some impromptu stand up or "biz" talk with the other acts in the backstage waiting area. Several have been on the healthcare tour too long. Road weary, homesickness for the life left behind was visible in their tired expressionless eyes.
My SPS circus...a Looney Toons unrehearsed and unscripted saga. Stiff Person Syndrome, a rare diagnostic albino elephant fills the small tent while dancing monkeys of thyroid and type-one diabetes disrupt the animal entourage with their unpredictable antics of hypos, fatigue, and annoying the elephant.
I am the one-person star of this show, an unskilled trapeze artist swinging dangerously in the spotlight without a net as the ringmaster (the specialist of the moment) thrills onlookers with a booming voice revealing the mysteries of my lab work. All is well. I execute the transition with grace and feigned skill to applause.
Quickly I donn a clown suit to juggle symptoms and meds for my multiple diagnoses as I try to remain balanced on a unicycle of normalcy. Losing my rhythm, I fall to be drenched by the stalking midget of failure in continual pursuit with the dancing monkeys.
My fall tour was a success. All my labs were good with no mishaps in my performance even though unicycle balance is often compromised in daily practice. My ringmasters were very pleased with my overall performance.
In my daily juggling practice, I notice the addition of a couple of small batons (symptoms) not familiar to my routine. As my labs and follow-ups were good, there wasn't much concern. As I told my endocrinologist, I do not want another dancing monkey (underlying diagnosis) to sneak in while we are focused on the elephant. An ANA, antinuclear, antibody test was ordered and it came back positive.
Many healthy people will have a positive reading, but my immune system is not healthy. It will be weeks before my booking with a new "ologist" for further exploration of this development, so in the meantime--I will continue my daily unicycle practice avoiding the midget in pursuit, keeping the dancing monkeys at a distance, while calming the albino elephant with meds.
On with the show!!
Copyright © 2011
~Edward E. Murrow
September was my fall tour, visiting all of my specialists in four weeks with a grand finale--my scheduled booking at the oncology clinic for my monthly infusion of IVIg. Complimentary concessions included crackers and juice to toast my yawner of a performance due to a double dose of pre-poke Benadryl.
Before my Benadryl rendition of Goodnight Sweetheart, I tried some impromptu stand up or "biz" talk with the other acts in the backstage waiting area. Several have been on the healthcare tour too long. Road weary, homesickness for the life left behind was visible in their tired expressionless eyes.
My SPS circus...a Looney Toons unrehearsed and unscripted saga. Stiff Person Syndrome, a rare diagnostic albino elephant fills the small tent while dancing monkeys of thyroid and type-one diabetes disrupt the animal entourage with their unpredictable antics of hypos, fatigue, and annoying the elephant.
I am the one-person star of this show, an unskilled trapeze artist swinging dangerously in the spotlight without a net as the ringmaster (the specialist of the moment) thrills onlookers with a booming voice revealing the mysteries of my lab work. All is well. I execute the transition with grace and feigned skill to applause.
Quickly I donn a clown suit to juggle symptoms and meds for my multiple diagnoses as I try to remain balanced on a unicycle of normalcy. Losing my rhythm, I fall to be drenched by the stalking midget of failure in continual pursuit with the dancing monkeys.
My fall tour was a success. All my labs were good with no mishaps in my performance even though unicycle balance is often compromised in daily practice. My ringmasters were very pleased with my overall performance.
In my daily juggling practice, I notice the addition of a couple of small batons (symptoms) not familiar to my routine. As my labs and follow-ups were good, there wasn't much concern. As I told my endocrinologist, I do not want another dancing monkey (underlying diagnosis) to sneak in while we are focused on the elephant. An ANA, antinuclear, antibody test was ordered and it came back positive.
Many healthy people will have a positive reading, but my immune system is not healthy. It will be weeks before my booking with a new "ologist" for further exploration of this development, so in the meantime--I will continue my daily unicycle practice avoiding the midget in pursuit, keeping the dancing monkeys at a distance, while calming the albino elephant with meds.
On with the show!!
Copyright © 2011
Who Am I?
"I am a flower quickly fading, here today and gone tomorrow, a wave tossed in the ocean, a vapor in the wind." ~Casting Crowns
This is one of my favorite songs and defines the most important aspect of the many nuances that define me. I am His.
This is one of my favorite songs and defines the most important aspect of the many nuances that define me. I am His.
Monday, August 8, 2011
From A Distance
"Distance not only gives nostalgia, but perspective, and maybe objectivity."
~Robert Morgan
On an impulse, I slipped my camera from my purse and took some photos on my flight's ascent. Many thoughts twirled through my mind--the ever present angst of traveling alone with my invisible syndrome terrorist, those I was leaving behind, my destination.
I became philosophical viewing the distant horizon from my sitting on the clouds vantage. With the clarity of altitude, the mysterious beyond lost the secrecy of my limited ground level view. I could see the hidden mountain range rising behind the rugged terrain of Mt. Garfield. The rough sandy erosion took on an artistic design.
Roads became winding ribbons with visible destinations, not just obscure roamings. From a distance, pot holes, rough terrain, and detours did not exist; though I knew they were there. Fields had distinct boundaries, rows planted in uniform formation.
From a distance, altitude made sense of ground level disorder. I thought about me, my life, my future. Sometimes I allow the uncertainty of circumstances to cloud the vision of my horizon. I get lost, turned around, or sidetracked. Maybe if I can keep my attitude at a higher altitude, I can maintain a clearer focus during those confusing times. Take a step back and look up--from an emotional distance.
Copyright © 2011
Sunday, August 7, 2011
SPS - Living as Wile E. Coyote
Chuck Jones said, “Wile E. is my reality, Bugs Bunny is my goal.”
Diagnosed with Stiff Person syndrome, I am living a Looney Tunes reality as Wile. E. Coyote. The ever unpredictable efficiency of "Acme" prescriptions, situation or emotional stimulus, combined with my personal Wile. E. cunning is a potential recipe for "Th-th-th-that's all Folks!" My only hope is to capture the ease and speed of mainstream living as the Road Runner, completely resistant to all dangers and evil.
SPS is so hard to explain, the triggers, symptoms, spasms. This cartoon captures some of the fearful uncertainties of some types of syndrome spasm, minus the frozen full-body rigidity. And in every cartoon, Wile. E. falls--several times.
Swallowing the earthquake pills, similar to stimulus overload for me, Wile. E. demonstrates the trepidation, unpredictability, and strength of Stiff Person Syndrome spasms...with the ending death-defying fall. The Road Runner, "normal" humanity, is unaffected by stimulus overload.
And like Wile. E., I will appear in another episode of attempt vs. the odds. Persistent.
Copyright © 2011
Diagnosed with Stiff Person syndrome, I am living a Looney Tunes reality as Wile. E. Coyote. The ever unpredictable efficiency of "Acme" prescriptions, situation or emotional stimulus, combined with my personal Wile. E. cunning is a potential recipe for "Th-th-th-that's all Folks!" My only hope is to capture the ease and speed of mainstream living as the Road Runner, completely resistant to all dangers and evil.
SPS is so hard to explain, the triggers, symptoms, spasms. This cartoon captures some of the fearful uncertainties of some types of syndrome spasm, minus the frozen full-body rigidity. And in every cartoon, Wile. E. falls--several times.
Swallowing the earthquake pills, similar to stimulus overload for me, Wile. E. demonstrates the trepidation, unpredictability, and strength of Stiff Person Syndrome spasms...with the ending death-defying fall. The Road Runner, "normal" humanity, is unaffected by stimulus overload.
And like Wile. E., I will appear in another episode of attempt vs. the odds. Persistent.
Copyright © 2011
Friday, June 24, 2011
May I Rest In Peace
"According to your medical checkup, you are dead." ~A doctor to René Desmaison after he was rescued off the north face of Grandes Jorasses, having spent 342 hours without food or water.
Yesterday I received my medical update status to turn in for my continued life insurance coverage. (I lose value as I age.) In reading about my condition, there were only three lines to list the diagnostic codes for my ails, so having insulin-dependent diabetes was mentioned in another section. The three lines were filled with my other chronic diagnoses.
In reading the severity of my symptoms, limitations, and bleak prognosis for recovery, I am thankful I am a medical cynic with faith, hope, and optimism. Just to be sure...
I ordered flowers for my memorial service before getting the specifics of time and place. I scoured the online obituaries and did not find anything on me. Finally, I checked my pulse and found one. I am debating about the flowers. Every woman loves to get flowers.
May I live in peace.
Copyright © 2011
Yesterday I received my medical update status to turn in for my continued life insurance coverage. (I lose value as I age.) In reading about my condition, there were only three lines to list the diagnostic codes for my ails, so having insulin-dependent diabetes was mentioned in another section. The three lines were filled with my other chronic diagnoses.
In reading the severity of my symptoms, limitations, and bleak prognosis for recovery, I am thankful I am a medical cynic with faith, hope, and optimism. Just to be sure...
I ordered flowers for my memorial service before getting the specifics of time and place. I scoured the online obituaries and did not find anything on me. Finally, I checked my pulse and found one. I am debating about the flowers. Every woman loves to get flowers.
May I live in peace.
Copyright © 2011
A Month of Memories
“Life gives us brief moments with another...but sometimes in those brief moment we get memories that last a life time...” ~Unknown
I made it! My first solo road trip to surprise Mom for Mother's Day. May, 2011 - a month of memories.
Hanging out at Mom's for a couple of weeks, we talked, watched Dancing With The Stars, talked, shopped, ate out, talked, lounged, took walks, worked in Mom's doctor appointments...and talked--serious conversations, vents, reminiscing, woman-to-woman sharing, & laughing.
Not restrained by time, we went on an impromptu road trip. Driving at whim, we stopped frequently, enjoyed the scenery, traveled through the Blue Ridge Mountains, visited family, had moments of companionable silence, lost in thought to the hum of tires on the freeway and an occasional CD. Without an itinerary, we shared a motel room at different stops as desired.
Typical women, we both over-packed clothing, but with our conjoined medical supplies/medications/equipment, I thought a white pharmaceutical delivery van would have been a more suitable mode of transportation. Each stop required getting a luggage carrier to load with an oxygen machine, diabetic supplies, our individual rolling totes with prescriptions, a breathalyzer machine, cooler with insulin, along with a change of clothes and pajamas--Just to haul it all out and repack the car the next day.
Without jumping on the beds, we had slumber parties in the motel rooms. I resorted to little girl mode, crawling into bed with Mom one morning to snuggle. The continental breakfasts! We stuffed ourselves on eggs, biscuits and gravy, pastries, and juice out of nutritional guilt.
We enjoyed more shopping, eating out, sharing dessert, (Bob Evan's strawberry pie!), lounging in pajamas until noon with coffee and more talking, movies, mother/daughter pedicures, Memorial Day at the ocean, and a boat ride.
Mom has a fear of water. She would have learned how to swim if getting in the pool wasn't a necessity. "I am taking you for a boat ride, " I informed her with my childlike orneriness and anticipation.
"On the water?" she responded in dismay.
I had to laugh. "No, Mom. I am going to take you to the mall and see what a quarter will buy. I will wave as you go around." After I had my fun, I promised her she would enjoy it.
An afternoon meandering at the Jacksonville Landing, a lunch of chicken wings and another dessert, we took the water taxi. Mom really enjoyed it. I enjoyed her.
We had an amazing month of being two girls on an "Excellent Adventure." When I started my solo drive, it was with the intention of spending a quality and quantity of time with Mom, just the two of us. Living the experience was better than imagining it.
Until next time...I have been hearing about a zip line over a pool of alligators?
Make memories with those you love, don't miss the boat.
Copyright © 2011
Saturday, June 18, 2011
Divine Driving - Against All Odds
"There is great meaning in life for those who are willing to journey."
~Jim England
Winter was bitter, harsh, and lonely morphing into a gray, damp, chilly afterthought. No spring for her. Sharing morning marathon talks over coffee by phone, my mom and I are very close but separated by 900 miles. The long bleak months of home confinement, coupled with some newly diagnosed health issues, were taking a toll on her spirit. I heard the dejection in her voice.
I was planning a summer trip, but loving concern kept niggling at me to plan an earlier surprise visit. Not a problem...just a budget buster, the numerous complications of my physical conditions, and fear. In recent life assessment, one of my unrecognized dreams/goals was to take a solo road trip, just me, a big girl. Scary stuff considering my physical limitations, diabetic monitoring, and syndrome triggers.
Nine hundred miles is not a road trip, but a sojourn. The more I thought about it, the more excited I became. Mother's Day was approaching. A surprise gift--a hand-delivered card. Love often overrides sound judgment. (Thankfully.)
I decided to set out the Friday before Mother's Day, allowing a two-day drive with a motel layover. MapQuest yielded a written map with instructions. One of my disabilities is being severely directionally challenged. A Garmin was a previous gift to help with local navigation.
On Monday of my countdown week, I had an infusion. This infusion had an unusually long and nasty recovery--three days of headache, fatigue, mild nausea, and aches. I started to doubt the wisdom of my plans. Thursday dawned with an improved physical outlook, reigniting my initial excitement.
Packing. Clothing, cosmetics, and accessories are minor. My life support: medications, insulin pump supplies, backup pump, glucose monitor, test strips, and gait aids were carefully laid out, packed, unpacked, rechecked, and triple-checked along with remembering necessary emergency contact information.
I tried to remain calm. Excitement or angst, of which I had an abundance of both, aggravate or create syndrome stiffness, pain, and spasmodic attacks. Breathe, pray, breathe, pray.
After a restless night, I awoke and loaded the car. (The inventor of wheeled luggage has my forever gratitude...ease and surrogate walker.) A mix of Cd's, snacks, bottled water, and a cooler for my insulin was the last to go into the car. I planned my departure for late morning to avoid rush hour traffic. SPS does not handle any sort of rush well.
I stopped to get a coffee to compensate for my lack of sleep the night before. The skies opened to a flooding deluge of rain...my worst fear as a passenger in a car, let alone driving on an interstate filled with semi-trucks.
I closed my eyes and said a simple prayer, "God, I need you to be the driver. I cannot do it without you." A settling calm came over me.
Most of Friday was driving through torrents of rain. Brain-dead by rush hour that evening, I finally exited from the standstill bumper-to-bumper 5 mph traffic to check into the first-in-view motel. With my hiking pole and roll-along carry-on, I negotiated a killer deal with the motel clerk.
Laying on the king-sized bed of my ritzy suite, I was heady with the independence of the day's accomplishment..."normal"...that delicious and elusive word. I called my supportive loved ones, clued in on my surprise, to update on the safety of my status. A hot shower and bed beckoned to rest my scratchy eyes, elevate my tingling, burning right arm, and stretch my aching back and stiff neck.
Savoring the continental breakfast, as a first-time solo traveler, was a new and exciting experience for me. Resetting my Garmin traveling companion, I set out for the long day's travel with seeing Mom as my prize at the end of the day. Giggles of anticipation erupted from me all day.
I pulled up that evening as Mom was grilling Bratwurst. I told her, "I thought I would save the postage for your Mother's Day card and just bring it to you." Happiness that shatters the heart was felt in our hug.
It was one of the most amazing experiences of my adult life--the euphoria of being with Mom and overcoming 20+ years of SPS not letting me, or others telling me I can't, for me to make my first solo road trip--at the age of 53, driving 900 miles. But I was not the driver.
"The feeling remains that God is on the journey, too." ~Teresa Of Avila
Copyright © 2011
Saturday, April 16, 2011
Mistaken For Normal!
“Nobody realizes that some people expend tremendous energy merely to be normal.” ~Albert Camus
My patient files are two inches thick--at three different physicians' offices. I am a medical enigma, even to myself. Daily juggling medication times, carb-counting, blood checks, and physical ability vs. energy output, my life is anything but normal. Sweet uncomplicated "normalcy" is my heart's desire. Utilizing ingenuity, medication peaks, and my natural gift of gab, I create a David Copperfield, Vegas finale illusion of social normalcy--showtime!
I did not realize how convincing I am until a phone conversation with a girlfriend this week who is a nurse. (She is aware of my medical conditions.) We were discussing an upcoming activity that my instinct wasn't comfortable with personally participating. Finally I explained the physical and mental energy this activity would require from me that particular evening.
With surprise and sincere understanding, she apologized. "I forgot about your illness. I did not think." She literally made my day. Having spent time with me, she actually sees me as Debbie, a person, not my diagnosis. Normal!
I wonder if Caesar's Palace will schedule a booking for me--headliner. Forget being an opening act, I went pro.
Copyright © 2011
My patient files are two inches thick--at three different physicians' offices. I am a medical enigma, even to myself. Daily juggling medication times, carb-counting, blood checks, and physical ability vs. energy output, my life is anything but normal. Sweet uncomplicated "normalcy" is my heart's desire. Utilizing ingenuity, medication peaks, and my natural gift of gab, I create a David Copperfield, Vegas finale illusion of social normalcy--showtime!
I did not realize how convincing I am until a phone conversation with a girlfriend this week who is a nurse. (She is aware of my medical conditions.) We were discussing an upcoming activity that my instinct wasn't comfortable with personally participating. Finally I explained the physical and mental energy this activity would require from me that particular evening.
With surprise and sincere understanding, she apologized. "I forgot about your illness. I did not think." She literally made my day. Having spent time with me, she actually sees me as Debbie, a person, not my diagnosis. Normal!
I wonder if Caesar's Palace will schedule a booking for me--headliner. Forget being an opening act, I went pro.
Copyright © 2011
Thursday, April 7, 2011
A Bubble Bath
“I feel sexy when I get out of the tub - your skin is fresh and you've put up your hair without looking.” ~Shania Twain
Living with the daily challenges of chronic illness and time consumption with the general busyness of life leave little time for self-indulgence, let alone pampering my femininity. Too tired or lack of interest are convenient excuses. But once in awhile...
Alone, the peace and quiet of an evening seduced me into celebrating being a woman. Dimming the bathroom lights, the scent of vanilla from lighted candles softly illuminated the bathtub as I ran a hot cranberry bubble bath. Instrumental mood music played in the background as I lowered myself into the steamy warmth.
Occasionally sipping on a cool drink, I closed my eyes and just relaxed my head against a rolled up towel. I would trickle hot bubbly water from the washcloth along my shoulders, luxuriating in the silky heat.
Drying off from my bath, I lathered my damp skin with a floral cream from Bath & Body Works. I felt pampered, sexy, and beautiful.
Copyright © 2011
Living with the daily challenges of chronic illness and time consumption with the general busyness of life leave little time for self-indulgence, let alone pampering my femininity. Too tired or lack of interest are convenient excuses. But once in awhile...
Alone, the peace and quiet of an evening seduced me into celebrating being a woman. Dimming the bathroom lights, the scent of vanilla from lighted candles softly illuminated the bathtub as I ran a hot cranberry bubble bath. Instrumental mood music played in the background as I lowered myself into the steamy warmth.
Occasionally sipping on a cool drink, I closed my eyes and just relaxed my head against a rolled up towel. I would trickle hot bubbly water from the washcloth along my shoulders, luxuriating in the silky heat.
Drying off from my bath, I lathered my damp skin with a floral cream from Bath & Body Works. I felt pampered, sexy, and beautiful.
Copyright © 2011
Saturday, March 12, 2011
Second Base--Rounding Third
"Progress always involves risks. You can't steal second base and keep your foot on first." ~Frederick B. Wilcox
I always viewed baseball as the least invasive contact sport, until I compared it to living with Stiff Person Syndrome. The opportunity to score is only when you leave the safety of the dugout--alone--just you, the pitcher, and the ability to crack a trick pitch to run for the safety of first base. A beginning.
I made a feeble attempt to leave confining dugout safety a few years ago. SPS fear and insecurity had me back in the dugout, with a different team, and still a bench- warmer. "Batter up!" Taking another chance at risk, I picked up a heavy bat, tapped the packed sand from my cleats, and looked the pitcher in the eye.
Hit in the side by a fast ball I could not duck, I hobbled to first base, but I was in position to score! Baseball involves understanding the rules, looking for opportunities, and stealing the safety of a base while sliding to avoid being out.
Catching my breath from the hard hit landing me on first base, I welcomed the opportunity to score. Alone on the field with nine players focused on taking me down, (SPS symptoms), the glare of the lights, and yelling crowd, (boos & cheers), were distractions interrupting my strategy to steal. Just breathe and focus.
My recent neuro visit was an obvious uplift for him regarding my progress--going over my stats. I have been going to the gym 3 times a week, gait aid in hand, but doing light weight training and elliptical workouts during medication peaks. Outside walking with my two hiking poles on off days is agoraphobia training. (I was stuck outside of the library last week, but a kind stranger walked me to my car.) I mentor a child and have developed some friendships and a social life topside of the SPS underworld. I still do some SPS advocacy, but within a healthy balance. Third base goals are in my sight.
Dusting off my knees from my brutal second base slide, I watch the ongoing game with renewing confidence--waiting for my third base opening. I am already contemplating home and another round at bat. My lunch as a mentor this week was appropriately the baseball favorite--an American hot dog.
"Never let the fear of striking out get in your way." ~Babe Ruth
Copyright © 2011
I always viewed baseball as the least invasive contact sport, until I compared it to living with Stiff Person Syndrome. The opportunity to score is only when you leave the safety of the dugout--alone--just you, the pitcher, and the ability to crack a trick pitch to run for the safety of first base. A beginning.
I made a feeble attempt to leave confining dugout safety a few years ago. SPS fear and insecurity had me back in the dugout, with a different team, and still a bench- warmer. "Batter up!" Taking another chance at risk, I picked up a heavy bat, tapped the packed sand from my cleats, and looked the pitcher in the eye.
Hit in the side by a fast ball I could not duck, I hobbled to first base, but I was in position to score! Baseball involves understanding the rules, looking for opportunities, and stealing the safety of a base while sliding to avoid being out.
Catching my breath from the hard hit landing me on first base, I welcomed the opportunity to score. Alone on the field with nine players focused on taking me down, (SPS symptoms), the glare of the lights, and yelling crowd, (boos & cheers), were distractions interrupting my strategy to steal. Just breathe and focus.
My recent neuro visit was an obvious uplift for him regarding my progress--going over my stats. I have been going to the gym 3 times a week, gait aid in hand, but doing light weight training and elliptical workouts during medication peaks. Outside walking with my two hiking poles on off days is agoraphobia training. (I was stuck outside of the library last week, but a kind stranger walked me to my car.) I mentor a child and have developed some friendships and a social life topside of the SPS underworld. I still do some SPS advocacy, but within a healthy balance. Third base goals are in my sight.
Dusting off my knees from my brutal second base slide, I watch the ongoing game with renewing confidence--waiting for my third base opening. I am already contemplating home and another round at bat. My lunch as a mentor this week was appropriately the baseball favorite--an American hot dog.
"Never let the fear of striking out get in your way." ~Babe Ruth
Copyright © 2011
Friday, March 4, 2011
Here Comes The Sun
“Those who bring sunshine to the lives of others cannot keep it from themselves.” ~James Matthew Barrie
I live with chronic illness. Anyone living with a chronic condition knows the physical discomfort, limitations, and emotional expense it takes every single day. If I let it go unchecked, I drown in a self-absorbed preoccupation with the popular trio of me, myself, and I. It is easy to see just inside your own box and become oblivious to the pain of others. One of the best things I do for myself is to give to others. How? What? Why?
My heart is unaffected. I can love, share understanding, listen. I have been in public and see someone who is obviously having a bad day. A genuine smile and kind word go a long way to brighten their day and mine.
I turn off my SPS saga and listen to the problems/worries/fears of others. In listening and offering compassion, advice, and friendship to one in need gives me a boost of appreciation for the good things in my life. I rediscover my worth as a person who can give, not just take.
A member of my sunday school class had lost a loved one. I signed up to take a meal. A bucket of chicken and a couple of sides can go a long way to let a family know you care and ease things for them during a rough time of grief.
My church offers mentoring programs for children: spending time with a special needs child, reading, or planning class parties.
Nursing homes welcome volunteers to visit with the residents, just talk. The residents love it and the time I did that, I was richly rewarded with love and a firsthand account of historical events. Fascinating.
It only takes a caring heart and time to chase away the blues. Here comes the sun!
Copyright © 2011
I live with chronic illness. Anyone living with a chronic condition knows the physical discomfort, limitations, and emotional expense it takes every single day. If I let it go unchecked, I drown in a self-absorbed preoccupation with the popular trio of me, myself, and I. It is easy to see just inside your own box and become oblivious to the pain of others. One of the best things I do for myself is to give to others. How? What? Why?
My heart is unaffected. I can love, share understanding, listen. I have been in public and see someone who is obviously having a bad day. A genuine smile and kind word go a long way to brighten their day and mine.
I turn off my SPS saga and listen to the problems/worries/fears of others. In listening and offering compassion, advice, and friendship to one in need gives me a boost of appreciation for the good things in my life. I rediscover my worth as a person who can give, not just take.
A member of my sunday school class had lost a loved one. I signed up to take a meal. A bucket of chicken and a couple of sides can go a long way to let a family know you care and ease things for them during a rough time of grief.
My church offers mentoring programs for children: spending time with a special needs child, reading, or planning class parties.
Nursing homes welcome volunteers to visit with the residents, just talk. The residents love it and the time I did that, I was richly rewarded with love and a firsthand account of historical events. Fascinating.
It only takes a caring heart and time to chase away the blues. Here comes the sun!
Copyright © 2011
Hit & Run
“A warrior takes responsibility for his acts, for the most trivial of acts. An average man acts out his thoughts, and never takes responsibility for what he does.” ~Carlos Castaneda
Tuesday evening was a fun get-together with friends for pizza. It is liberating and healing to laugh and socialize in a 'normal' setting--especially if pizza is involved. I talked a friend into splitting a sinfully decadent chocolate dessert called 'Chocolate Temptation.' (Worth every fat gram and carb!)
The first to leave our party came abruptly back into the pizza place--an eye witness to a hit & run to a parked vehicle in the parking lot which happened to be mine! She was a good witness--getting the man's phone number and name from the counter employee as he was a pickup order. Apparently he was fashionably coordinated in red crocks with a matching red shirt.
I can tell I am getting old. The responding officer looked more like a cub scout than a policeman, but he was eye candy. Investigating the damage, my rear tail light lay in splinters on the asphalt, grooved punch in the bumper, and a silver trim something lay in solitary twisted carnage in the dimly-lit crime scene.
I guess I have been fighting serious health issues for so long, I felt nothing looking at the broken shards littering the ground--knowing my car can be repaired. My broken health is an ugly duct-taped temporary medication repair of questionable efficiency. My body is totaled. Engaged in a daily battle with Stiff Person Syndrome, I need to have the mindset of a warrior. Life priorities refocus with clarity--important and trivial, permanent and temporary.
Outside of his garrish attire, Mr. Red Crocs is an irresponsible and average guy. I wish SPS would take a lesson from our pizza-toting flight perp, don some red crocs and go on the lam. No chase would ensue.
Copyright © 2011
Tuesday evening was a fun get-together with friends for pizza. It is liberating and healing to laugh and socialize in a 'normal' setting--especially if pizza is involved. I talked a friend into splitting a sinfully decadent chocolate dessert called 'Chocolate Temptation.' (Worth every fat gram and carb!)
The first to leave our party came abruptly back into the pizza place--an eye witness to a hit & run to a parked vehicle in the parking lot which happened to be mine! She was a good witness--getting the man's phone number and name from the counter employee as he was a pickup order. Apparently he was fashionably coordinated in red crocks with a matching red shirt.
I can tell I am getting old. The responding officer looked more like a cub scout than a policeman, but he was eye candy. Investigating the damage, my rear tail light lay in splinters on the asphalt, grooved punch in the bumper, and a silver trim something lay in solitary twisted carnage in the dimly-lit crime scene.
I guess I have been fighting serious health issues for so long, I felt nothing looking at the broken shards littering the ground--knowing my car can be repaired. My broken health is an ugly duct-taped temporary medication repair of questionable efficiency. My body is totaled. Engaged in a daily battle with Stiff Person Syndrome, I need to have the mindset of a warrior. Life priorities refocus with clarity--important and trivial, permanent and temporary.
Outside of his garrish attire, Mr. Red Crocs is an irresponsible and average guy. I wish SPS would take a lesson from our pizza-toting flight perp, don some red crocs and go on the lam. No chase would ensue.
Copyright © 2011
Rare Disease Day
Rare Disease Day is recognized on February 28. For those of us with a rare disease, every day is rare disease day. I appreciate the many unified voices of advocacy, along with the year-long efforts of Eurodis and NORD, to bring awareness to this 'rare' community that collectively affects 1 out of 10 individuals.
I am always touched and inspired reading the stories of others with a different diagnosis, but who share the same struggles as me with medical and social understanding...just living.
Copyright © 2011
I am always touched and inspired reading the stories of others with a different diagnosis, but who share the same struggles as me with medical and social understanding...just living.
Copyright © 2011
Wednesday, February 9, 2011
Friendship
"The warmth of a friend's presence brings joy to our hearts, sunlight to our souls, and pleasure to all of life." ~Unknown
Yesterday, I had planned on my original SPS-friendly workout at the gym, but a friend phoned. I took the call instead. She and I shared some serious talk, exchanged some thoughts, and had some female giggles. Feeling light, I opted for walking practice instead.
Floating on those "feelin' good" vibes, I managed to cross a small section of asphalt to retrieve my mail. (I did hesitate and needed a few test starts to get back over to the other side...Goal!!) While the sun warmed my face, recollecting bits of our conversation warmed my heart. This was one of those cherished moments my body was working reasonably in sync.
A group of us met for pizza last night. Conversation, banter, and laughter were shared, cementing a growing bond. I was experiencing the magical and elusive feeling of being "normal." My often-ignored normalcy was a celebration with friends. Life is good when shared with friends...even better with pizza.
Copyright © 2011
Yesterday, I had planned on my original SPS-friendly workout at the gym, but a friend phoned. I took the call instead. She and I shared some serious talk, exchanged some thoughts, and had some female giggles. Feeling light, I opted for walking practice instead.
Floating on those "feelin' good" vibes, I managed to cross a small section of asphalt to retrieve my mail. (I did hesitate and needed a few test starts to get back over to the other side...Goal!!) While the sun warmed my face, recollecting bits of our conversation warmed my heart. This was one of those cherished moments my body was working reasonably in sync.
A group of us met for pizza last night. Conversation, banter, and laughter were shared, cementing a growing bond. I was experiencing the magical and elusive feeling of being "normal." My often-ignored normalcy was a celebration with friends. Life is good when shared with friends...even better with pizza.
Copyright © 2011
Shades of Gray
“The photographer's palette [is] a thousand shades of gray.” ~H. E. Clark
Monday was my monthly infusion. Sitting in the waiting room, the window framed a panoramic view of the ocean. Monday was a cold and rainy day--gray. Looking out of the window, I experienced my first-time observation the entire seascape was gray--different shades of gray.
Previously unaware of the multiple shades of gray, the blending made the scene take on an artistic beauty instead of bleak and dreary for me. Mentally I tried to describe each grayish hue: slate, steel, pale, charcoal.
I looked around the waiting room, those who were there for chemo--ashen gray, sickly gray. My name was called to see the doctor. In a delicate dance of questioning, he wondered if I could extend the time between infusions. I told him my infusions were discontinued for a time in 1994 because I rebounded so well. I suffered a major crash.
As I took my seat, the infusion nurse informed me they did not have enough of the IVIG brand prescribed for me. Could I use the brand they had? The hospital was changing their supply brand to another in an administrative decision. It seems they are having difficulty getting my brand of IVIG and several chemos. She did not know why.
So is this the beginning of rationing? The casualties will be the elderly, the chronically ill, and the rare. The possible lack of supply will result in waiting--at the expense of other salvageable lives. It isn't as simple as administrative black or white, but a blending of shades of gray...people.
Copyright © 2011
Monday was my monthly infusion. Sitting in the waiting room, the window framed a panoramic view of the ocean. Monday was a cold and rainy day--gray. Looking out of the window, I experienced my first-time observation the entire seascape was gray--different shades of gray.
Previously unaware of the multiple shades of gray, the blending made the scene take on an artistic beauty instead of bleak and dreary for me. Mentally I tried to describe each grayish hue: slate, steel, pale, charcoal.
I looked around the waiting room, those who were there for chemo--ashen gray, sickly gray. My name was called to see the doctor. In a delicate dance of questioning, he wondered if I could extend the time between infusions. I told him my infusions were discontinued for a time in 1994 because I rebounded so well. I suffered a major crash.
As I took my seat, the infusion nurse informed me they did not have enough of the IVIG brand prescribed for me. Could I use the brand they had? The hospital was changing their supply brand to another in an administrative decision. It seems they are having difficulty getting my brand of IVIG and several chemos. She did not know why.
So is this the beginning of rationing? The casualties will be the elderly, the chronically ill, and the rare. The possible lack of supply will result in waiting--at the expense of other salvageable lives. It isn't as simple as administrative black or white, but a blending of shades of gray...people.
Copyright © 2011
Thursday, January 27, 2011
Hoochie Mama
"Cultivate your curves - they may be dangerous but they won't be avoided." ~Mae West
A friend and I were going for a walk at the mall combined with shopping for two 'must have' additions to my wardrobe: a pair of black dress pants and a gray skirt. She understands about my SPS, so was unfazed at my army camouflage print baby stroller (surrogate walker) to carry my 50lb. purse, hiking pole, and bottled water. With my SPS perception, going into a mall is leaving rear flank obscurity to charge from the front line in an active war zone.
I love to go shopping with a girlfriend. Unlike a man, girlfriends are not bored to a glassy-eyed catatonic state while you are in the fitting room on Mission Impossible to find a good fit to enhance your figure--for a reasonable price. When you need an honest opinion, a girlfriend will give it to you straight, not a beleaguered, cookie-cutter, "It looks great, Sweetheart. Ready to go?"
I found a church-appropriate length pencil skirt. On my slender frame, I looked like Olive Oyl. Opening the door, my assessment was confirmed with my friend's opinionated, "You need a shorter skirt."
Girlfriends also understand the importance of color. Charcoal gray or pale gray. "Go with the light gray. Summer is coming," her female wisdom suggested. I hadn't thought of that. So the shorter pale gray skirt it was.
Sunday morning, I decided on wearing my new pale gray skirt with a black sweater and lacy black nylons. SPS decides to wrestle with me. After a 10-minute aerobic, contortionist match on the couch, I triumphantly donned my fashionista pantyhose in a victory over SPS symptoms.
I was feeling fashionably good as I went to church. My girlfriend approached me with a big smile and said, "You've got your hoochie mama skirt on."
From Olive Oyl to a hoochie mama. I have to plead innocent. I was influenced.
Copyright © 2011
Monday, January 17, 2011
Man Against The World
“Pain is no evil, unless it conquers us” ~Charles Kingsley~
I loved this song before diagnosed with SPS. I love it more now. It could be a theme at times, the feeling of me against the world. Alone, embattled, abandoned. Ironically, this song is by a group called Survivor.
“Victory at all costs, victory in spite of all terror, victory however long and hard the road may be; for without victory there is no survival.”
~Winston Churchill~
Copyright © 2011
I loved this song before diagnosed with SPS. I love it more now. It could be a theme at times, the feeling of me against the world. Alone, embattled, abandoned. Ironically, this song is by a group called Survivor.
“Victory at all costs, victory in spite of all terror, victory however long and hard the road may be; for without victory there is no survival.”
~Winston Churchill~
Copyright © 2011
SPS Activity Budget
“We don't see this as a budget exercise. It's about management excellence.”
~David Barna~
SPS is a wicked step-mother with a Scrooge mentality of miserly. Every morning I timidly approach this domineering presence with my syndrome weary hand extended for a few pennies of ability. Gnarled fingers rattle the clinking coins from her full apron pocket in a cruel tease. I hold my breath in anticipation for the meager offering of the day. Will I get a few extra pennies today?
Shining with promise, I count the worn, dull coins in my open palm. How can I make the most of today's offering. What shall I spend my limited treasure on? What shall I sacrifice?
Budgeting my limited ability within medication opportunities is a daily SPS management skill. The challenge is to come under budget. Today's deficit will compromise tomorrow's spending--an overdraft with late fees--also known as a down-on-the-couch day with extra Aleve.
Saturday was difficult as I struggled within the limits of spending my last coins of the day. With nostalgic remorse, I remembered when I complained about effortlessly leaving the house to run to the store for a forgotten ingredient for supper...pre SPS. Sometimes the reality of having an ambitious mind within a challenged body is revisited heartbreak for me.
But the optimist in me resurfaces and is thankful for those precious coins I am given. Because of SPS, I realize the value of a moment. For my health, stay within budget. For happiness, do not hoard. Spend. Spend wisely.
“We're on a limited budget. And I think we've spent every nickel of it.”
~Jeff Smith~
Copyright © 2011
~David Barna~
SPS is a wicked step-mother with a Scrooge mentality of miserly. Every morning I timidly approach this domineering presence with my syndrome weary hand extended for a few pennies of ability. Gnarled fingers rattle the clinking coins from her full apron pocket in a cruel tease. I hold my breath in anticipation for the meager offering of the day. Will I get a few extra pennies today?
Shining with promise, I count the worn, dull coins in my open palm. How can I make the most of today's offering. What shall I spend my limited treasure on? What shall I sacrifice?
Budgeting my limited ability within medication opportunities is a daily SPS management skill. The challenge is to come under budget. Today's deficit will compromise tomorrow's spending--an overdraft with late fees--also known as a down-on-the-couch day with extra Aleve.
Saturday was difficult as I struggled within the limits of spending my last coins of the day. With nostalgic remorse, I remembered when I complained about effortlessly leaving the house to run to the store for a forgotten ingredient for supper...pre SPS. Sometimes the reality of having an ambitious mind within a challenged body is revisited heartbreak for me.
But the optimist in me resurfaces and is thankful for those precious coins I am given. Because of SPS, I realize the value of a moment. For my health, stay within budget. For happiness, do not hoard. Spend. Spend wisely.
“We're on a limited budget. And I think we've spent every nickel of it.”
~Jeff Smith~
Copyright © 2011
NORD SPS Research Grant
National Organization for Rare Disorders Awards Grant to Support Research in Stiff-Person Syndrome
I am really excited about this research grant for several reasons.
1) NORD will distribute this media release to approximately 11,000 contacts. Lundbeck released it on Business Wire. (I do not know how many that will reach.) SPS will get some serious exposure...awareness for us! ;)
2) Lundbeck's continuing interest & involvement in NORD's outreach through Rare Disease Day sheds light on how many are touched by a "rare" disease. One in 10. Sobering and humbling we were chosen for their donation. I am grateful.
3) The NORD SPS research fund, gifted by several small donations through the years, became a collective research grant of benefit. It takes many to achieve something great. ;)
4) NORD has always been an informative source of support and information for 7,000 rare diseases. They were my first outside contact when I was diagnosed in 1994. They have greatly expanded and continually work for the rare disease community.
5) Rare Disease Day has grown to epic proportions--worldwide in conjunction with Eurodis, facebook, media events, blogs...in a continuing effort to educate and impart understanding to a world unaware of the millions who are afflicted with a rare or orphan disease. Last year's USA Rare Disease Day front liner was an SPS story about an amazing woman with Paraneoplastic SPS & her dedicated husband. (I think highly of this couple.)
6) Research brings awareness, but it also inspires hope. Another puzzle piece may be discovered, a better treatment, maybe a cure! ;)
I hope this research grant gifts you with encouragement that with time, every little thing "one" may do or give can culminate into a major accomplishment. Tom Revenaugh & Stephen Hyde were SPS friends who have passed. Both designated their memorial tributes go to the NORD SPS research fund. I am taking a moment to honor their memories with their contributions to this grant.
Hope on the wings of angels.
Copyright © 2011
I am really excited about this research grant for several reasons.
1) NORD will distribute this media release to approximately 11,000 contacts. Lundbeck released it on Business Wire. (I do not know how many that will reach.) SPS will get some serious exposure...awareness for us! ;)
2) Lundbeck's continuing interest & involvement in NORD's outreach through Rare Disease Day sheds light on how many are touched by a "rare" disease. One in 10. Sobering and humbling we were chosen for their donation. I am grateful.
3) The NORD SPS research fund, gifted by several small donations through the years, became a collective research grant of benefit. It takes many to achieve something great. ;)
4) NORD has always been an informative source of support and information for 7,000 rare diseases. They were my first outside contact when I was diagnosed in 1994. They have greatly expanded and continually work for the rare disease community.
5) Rare Disease Day has grown to epic proportions--worldwide in conjunction with Eurodis, facebook, media events, blogs...in a continuing effort to educate and impart understanding to a world unaware of the millions who are afflicted with a rare or orphan disease. Last year's USA Rare Disease Day front liner was an SPS story about an amazing woman with Paraneoplastic SPS & her dedicated husband. (I think highly of this couple.)
6) Research brings awareness, but it also inspires hope. Another puzzle piece may be discovered, a better treatment, maybe a cure! ;)
I hope this research grant gifts you with encouragement that with time, every little thing "one" may do or give can culminate into a major accomplishment. Tom Revenaugh & Stephen Hyde were SPS friends who have passed. Both designated their memorial tributes go to the NORD SPS research fund. I am taking a moment to honor their memories with their contributions to this grant.
Hope on the wings of angels.
Copyright © 2011
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