"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
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