"We will either find a way or make one." ~Hannibal~
"It was courage, faith, endurance and a dogged determination to surmount all obstacles that built this bridge." ~John J. Watson~
Friday, January 23, 2009
Better Life in 2009
(Words of wisdom from an email forward.)
Nothing else so inspires and heartens people as words of appreciation. You and I may soon forget the words of encouragement and appreciation that we utter now, but the person to whom we have spoken them may treasure them and repeat them to themselves over a lifetime.
Tips for a Better Life in 2009...
1. Take a 10-30 minute walk every day. And while you walk, smile. It is the ultimate anti-depressant.
2. Sit in silence for at least 10 minutes each day.
3. Buy a DVR and tape your late night shows and get more sleep.
4. When you wake up in the morning complete the following statement, 'My purpose is to _________ today.'
5. Live with the 3 E's -- Energy, Enthusiasm, and Empathy.
6. Play more games and read more books than you did in 2008.
7. Make time to practice meditation, and prayer. They provide us with daily fuel for our busy lives.
8. Spend time with people over the age of 70 and under the age of 6.
9. Dream more while you are awake.
10. Eat more foods that grow on trees and plants and eat less food that is manufactured in plants.
11. Drink green tea and plenty of water. Eat blueberries, wild Alaskan salmon, broccoli, almonds & walnuts.
12. Try to make at least three people smile each day.
13. Clear clutter from your house, your car, your desk and let new and flowing energy into your life.
14. Don't waste your precious energy on gossip, OR issues of the past, negative thoughts or things you cannot control. Instead invest your energy in the positive present moment.
15. Realize that life is a school and you are here to learn. Problems are simply part of the curriculum that appear and fade away like algebra class but the lessons you learn will last a lifetime.
16. Eat breakfast like a king, lunch like a prince and dinner like a college kid with a maxed-out charge card.
17. Smile and laugh more. It will keep the NEGATIVE BLUES away.
18. Life isn't fair, but it's still good.
19. Life is too short to waste time hating anyone.
20. Don't take yourself so seriously. No one else does.
21. You don't have to win every argument. Agree to disagree.
22. Make peace with your past so it won't spoil the present.
23. Don't compare your life to others'. You have no idea what their journey is all about.
24. No one is in charge of your happiness except you.
25. Frame every so-called disaster with these words: 'In five years, will this matter?'
26. Forgive everyone for everything.
27. What other people think of you is none of your business.
28. REMEMBER GOD heals everything.
29. However good or bad a situation is, it will change.
30. Your job won't take care of you when you are sick. Your friends will. Stay in touch.
31. Get rid of anything that isn't useful, beautiful or joyful.
32. Envy is a waste of time. You already have all you need.
33. The best is yet to come.
34. No matter how you feel, get up, dress up and show up.
35. Do the right thing!
36. Call your family often. (Or email them to death!!!)
37. Each night before you go to bed complete the following statements: I am thankful for ________. Today I accomplished ________.
38. Remember that you are too blessed to be stressed.
39. Enjoy the ride. Remember this is not Disney World and you certainly don't want a fast pass. You only have one ride through life so make the most of it and enjoy the ride.
Nothing else so inspires and heartens people as words of appreciation. You and I may soon forget the words of encouragement and appreciation that we utter now, but the person to whom we have spoken them may treasure them and repeat them to themselves over a lifetime.
Tips for a Better Life in 2009...
1. Take a 10-30 minute walk every day. And while you walk, smile. It is the ultimate anti-depressant.
2. Sit in silence for at least 10 minutes each day.
3. Buy a DVR and tape your late night shows and get more sleep.
4. When you wake up in the morning complete the following statement, 'My purpose is to _________ today.'
5. Live with the 3 E's -- Energy, Enthusiasm, and Empathy.
6. Play more games and read more books than you did in 2008.
7. Make time to practice meditation, and prayer. They provide us with daily fuel for our busy lives.
8. Spend time with people over the age of 70 and under the age of 6.
9. Dream more while you are awake.
10. Eat more foods that grow on trees and plants and eat less food that is manufactured in plants.
11. Drink green tea and plenty of water. Eat blueberries, wild Alaskan salmon, broccoli, almonds & walnuts.
12. Try to make at least three people smile each day.
13. Clear clutter from your house, your car, your desk and let new and flowing energy into your life.
14. Don't waste your precious energy on gossip, OR issues of the past, negative thoughts or things you cannot control. Instead invest your energy in the positive present moment.
15. Realize that life is a school and you are here to learn. Problems are simply part of the curriculum that appear and fade away like algebra class but the lessons you learn will last a lifetime.
16. Eat breakfast like a king, lunch like a prince and dinner like a college kid with a maxed-out charge card.
17. Smile and laugh more. It will keep the NEGATIVE BLUES away.
18. Life isn't fair, but it's still good.
19. Life is too short to waste time hating anyone.
20. Don't take yourself so seriously. No one else does.
21. You don't have to win every argument. Agree to disagree.
22. Make peace with your past so it won't spoil the present.
23. Don't compare your life to others'. You have no idea what their journey is all about.
24. No one is in charge of your happiness except you.
25. Frame every so-called disaster with these words: 'In five years, will this matter?'
26. Forgive everyone for everything.
27. What other people think of you is none of your business.
28. REMEMBER GOD heals everything.
29. However good or bad a situation is, it will change.
30. Your job won't take care of you when you are sick. Your friends will. Stay in touch.
31. Get rid of anything that isn't useful, beautiful or joyful.
32. Envy is a waste of time. You already have all you need.
33. The best is yet to come.
34. No matter how you feel, get up, dress up and show up.
35. Do the right thing!
36. Call your family often. (Or email them to death!!!)
37. Each night before you go to bed complete the following statements: I am thankful for ________. Today I accomplished ________.
38. Remember that you are too blessed to be stressed.
39. Enjoy the ride. Remember this is not Disney World and you certainly don't want a fast pass. You only have one ride through life so make the most of it and enjoy the ride.
Tuesday, January 13, 2009
Run For The Roses
"The Difficult is that which can be done immediately; the impossible that which takes a little longer." ~George Santayana~
Difficult and Impossible used to be just words to me before contracting my Stiff Person Syndrome and diabetes combo. Never did I associate these words with simplistic things like walking, putting on shoes, just standing. Difficult and Impossible have morphed into words I struggle to live by...Challenge and Overcome.
Dealing with a stratification of physical complications, I dislike the word "ill" as I do not perceive myself as sick. I have disabling conditions mystified by the rarity of SPS. Life is a daily challenge.
My last month has been an aggressive agenda for me, taxing strength and pushing limits. I have had a couple days of self-inflicted bed rest. I was thinking to myself, "Why don't you stop? This is insane."
The answer came to me as quickly as I asked myself the question; because the agenda was difficult, not impossible. Memory flashed a couple of pictures in my mind: laying immovable on the bathroom floor, completely rigid and in intense full-body spasm, and an incident of a torso-spasm precipitating a respiratory arrest, sinking to the kitchen floor in a blackout. In those situations, effort was impossible. Difficult is a struggling challenge.
I chose to run the race. Sweat, pounding of hooves, kicking up dust...the Kentucky Derby. Worthwhile effort is an accomplishment, a winner's circle moment for me...a "Run For The Roses."
Artist: Dan Fogelberg
Song: Run For The Roses
...And it's something unknown
That drives you and carries you home.
And it's run for the roses
As fast as you can
Your fate is delivered
Your moment's at hand
It's the chance of a lifetime
In a lifetime of chance
And it's high time you joined in the dance
It's high time you joined in the dance.
NORD is coordinating the observance of Rare Disease Day in the U.S. on February 28, 2009.
Copyright © 2009
Difficult and Impossible used to be just words to me before contracting my Stiff Person Syndrome and diabetes combo. Never did I associate these words with simplistic things like walking, putting on shoes, just standing. Difficult and Impossible have morphed into words I struggle to live by...Challenge and Overcome.
Dealing with a stratification of physical complications, I dislike the word "ill" as I do not perceive myself as sick. I have disabling conditions mystified by the rarity of SPS. Life is a daily challenge.
My last month has been an aggressive agenda for me, taxing strength and pushing limits. I have had a couple days of self-inflicted bed rest. I was thinking to myself, "Why don't you stop? This is insane."
The answer came to me as quickly as I asked myself the question; because the agenda was difficult, not impossible. Memory flashed a couple of pictures in my mind: laying immovable on the bathroom floor, completely rigid and in intense full-body spasm, and an incident of a torso-spasm precipitating a respiratory arrest, sinking to the kitchen floor in a blackout. In those situations, effort was impossible. Difficult is a struggling challenge.
I chose to run the race. Sweat, pounding of hooves, kicking up dust...the Kentucky Derby. Worthwhile effort is an accomplishment, a winner's circle moment for me...a "Run For The Roses."
Artist: Dan Fogelberg
Song: Run For The Roses
...And it's something unknown
That drives you and carries you home.
And it's run for the roses
As fast as you can
Your fate is delivered
Your moment's at hand
It's the chance of a lifetime
In a lifetime of chance
And it's high time you joined in the dance
It's high time you joined in the dance.
NORD is coordinating the observance of Rare Disease Day in the U.S. on February 28, 2009.
Copyright © 2009
Taking Stock - Life Exchange
Receiving my disabling diagnosis of Stiff Person Syndrome derailed my life. Every aspect of my life was drastically impacted, twisted, or destroyed. Improved health or stabilization, often, became my entire focus of living.
Overwhelmed, it was easy to lose sight of who I am and difficult knowing how to live life, exchanging my was to what is; 'Is' being a fathomless unknown filled with innumerable challenges.
For a quality of life, I had to take stock of me, mentally and emotionally exchange my 'was' for a hopeful and productive 'is'...choosing to live forward. Days, circumstances, or moments will still submerge me in feeling overwhelmed living in the deep end.
The following excerpt deals with financial issues, but I find it applicable for me during periods of attitude realignment, investments of me.
==========
Robert Ringer’s
Suggestions for Feeling Overwhelmed:
· Call time out and physically and mentally come to a complete stop.
· Step back and get a big picture perspective of the battlefield.
· Eliminate everything which isn’t crucial to achieving your most important objectives.
· Don’t try to do everything; just do something.
· BEGIN
· Concentrate exclusively on the project at hand.
· Sustain your movement at a comfortable pace.
· Don’t stop until you’re done.
· Than – and only then – move on to the next project.
These notes are from Robert Ringer’s 1988 audio program, Living Without Limits. Ringer is best known for his books in the 1970’s Winning Through Intimidation and Looking Out For Number One.
==========
A healthy portfolio is a balanced one. I invest some of my time and energies in sharing my challenges and experiences with others. It helps give meaning to my condition. I invest time in normal pursuits in life. I was guilty of past practices of heavily investing more into my disabled file, not emotionally productive. I invest in me.
Investments in my life need to be adjusted daily: trade-offs, sell-offs, new enterprises...in my NOW index.
“When you do nothing, you feel overwhelmed and powerless. But when you get involved, you feel the sense of hope and accomplishment that comes from knowing you are working to make things better.” ~Unknown~
NORD is coordinating the observance of Rare Disease Day in the U.S. on February 28, 2009.
Copyright © 2009
Overwhelmed, it was easy to lose sight of who I am and difficult knowing how to live life, exchanging my was to what is; 'Is' being a fathomless unknown filled with innumerable challenges.
For a quality of life, I had to take stock of me, mentally and emotionally exchange my 'was' for a hopeful and productive 'is'...choosing to live forward. Days, circumstances, or moments will still submerge me in feeling overwhelmed living in the deep end.
The following excerpt deals with financial issues, but I find it applicable for me during periods of attitude realignment, investments of me.
==========
Robert Ringer’s
Suggestions for Feeling Overwhelmed:
· Call time out and physically and mentally come to a complete stop.
· Step back and get a big picture perspective of the battlefield.
· Eliminate everything which isn’t crucial to achieving your most important objectives.
· Don’t try to do everything; just do something.
· BEGIN
· Concentrate exclusively on the project at hand.
· Sustain your movement at a comfortable pace.
· Don’t stop until you’re done.
· Than – and only then – move on to the next project.
These notes are from Robert Ringer’s 1988 audio program, Living Without Limits. Ringer is best known for his books in the 1970’s Winning Through Intimidation and Looking Out For Number One.
==========
A healthy portfolio is a balanced one. I invest some of my time and energies in sharing my challenges and experiences with others. It helps give meaning to my condition. I invest time in normal pursuits in life. I was guilty of past practices of heavily investing more into my disabled file, not emotionally productive. I invest in me.
Investments in my life need to be adjusted daily: trade-offs, sell-offs, new enterprises...in my NOW index.
“When you do nothing, you feel overwhelmed and powerless. But when you get involved, you feel the sense of hope and accomplishment that comes from knowing you are working to make things better.” ~Unknown~
NORD is coordinating the observance of Rare Disease Day in the U.S. on February 28, 2009.
Copyright © 2009
Tuesday, January 6, 2009
Bearded Lady
I may have a rare disorder and be tagged disabled, but I am still a normal woman. At the age of 51, things are still working, but I know my female engine has to be a quart low on estrogen. I don't have time for PMS as hormone fluctuations mess with my blood sugars and SPS symptoms. I also need to allow time for grooming middle-age peach fuzz.
I discovered a chin hair this week. Tweezers easily took care of the lone strand. I keep Andy Rooney eyebrows from sprouting, twin expressive caterpillars above my eyes.
I have been a willing participant in the masochistic ritual of lip waxing for years. When a five o'clock shadow becomes the "in" fashion for women, I will gladly part my mustache to apply lipstick. I have sported a few burns from overextending the hot melted wax over my lip line just to zip the brunette fuzz in a one-second ye-ow!
(A word of caution...do not spill melted wax in the microwave. It is hard to clean up when in a rush.)
A bald face can be more complicated than smooth legs...compliments of Venus razors and shaving cream. (Without SPS spasm and rigidity interruptions.)
Considering the rarity of my disability and the macabre fascination of a bearded lady...I will be easily recognized if I decide shaving and waxing are worth the trade-off for a showcase in Barnum & Bailey's Circus.
Look for me:
"Whatever you do, do it with all your might. Work at it, early and late, in season and out of season, not leaving a stone unturned, and never deferring for a single hour that which can be done just as well as now."
-- P. T. Barnum, circus owner
Copyright © 2009
I discovered a chin hair this week. Tweezers easily took care of the lone strand. I keep Andy Rooney eyebrows from sprouting, twin expressive caterpillars above my eyes.
I have been a willing participant in the masochistic ritual of lip waxing for years. When a five o'clock shadow becomes the "in" fashion for women, I will gladly part my mustache to apply lipstick. I have sported a few burns from overextending the hot melted wax over my lip line just to zip the brunette fuzz in a one-second ye-ow!
(A word of caution...do not spill melted wax in the microwave. It is hard to clean up when in a rush.)
A bald face can be more complicated than smooth legs...compliments of Venus razors and shaving cream. (Without SPS spasm and rigidity interruptions.)
Considering the rarity of my disability and the macabre fascination of a bearded lady...I will be easily recognized if I decide shaving and waxing are worth the trade-off for a showcase in Barnum & Bailey's Circus.
Look for me:
"Whatever you do, do it with all your might. Work at it, early and late, in season and out of season, not leaving a stone unturned, and never deferring for a single hour that which can be done just as well as now."
-- P. T. Barnum, circus owner
Copyright © 2009
A Rare Bird - Pay to Share
Disability wears many guises: chronic illness, neurological disorders, mental challenges, loss of a limb or mobility. People can have compassion, but to truly understand, "Walk a mile in the shoes."
Add to this toxic mix a rare disorder diagnosis and understanding from the social network of medicine, people, or family is severely taxed. An explanation of the rarity of my diagnosis became a learned evasive and vague one-liner of general simplicity, or a detailed monologue expertly refined from repetitive recitation. Reactions vary from indifference, intrigued, melodramatic, or a blank stare.
I received my diagnosis of Stiff Person Syndrome in 1994, following four years of progressive symptoms of severity that led to disability...a life sentence since there isn't a cure. Stiff Person Syndrome, (SPS), was known as Stiffman Syndrome when I received my diagnosis...a frivolous name for a possible life-threatening, definitely life-altering diagnosis.
So began my SPS tour: appearing at various medical facilities for all my health issues, a team of personal care physicians, continual clueless consumer representative phone calls, lab tests...the list goes on...my time and my dime.
So often, I am the prize albino monkey on display at the medical zoo. I welcome the opportunity to explain my condition...the "rare" find. I have had some interesting reactions in teaching my one-on-one course to the "up and coming" residents of the medical community.
My diagnostic neurologist left me alone with one his proteges to see if this young doctor could correctly figure out my diagnosis. When he actually nailed it, in a burst of exuberance, he smiled broadly with an emphatic, "Yes!" (Aced the extra bonus question on a pop quiz.) Inwardly, I was amused as he quickly recomposed his physician's professional demeanor.
I lost one child to a recessive genetic disorder, Spinal Muscular Atrophy. To date, there isn't a genetic relationship between SPS and SMA. One young resident sincerely asked a blonde moment question, "How does it feel to have two exotic illnesses in your family?"
Well, let me think about this. My child died and I can't walk, move well, am in constant pain, and am disabled. Exotic? My imagination conjures up a tropical and secluded beach overlooking turquoise waters...the ability to run in the surf holding my child's hand as she runs along with me.
My second neurologist enjoyed having the occasional resident in attendance whenever I had an appointment. In educating the young-doctor-in-waiting, I was the rare exotic bird of neurology in his practice...the elusive diagnosis.
It is a positive to be able to share and hopefully enlighten the medical community and others about my condition, but I am the one who should be paid.
Stiff Person Syndrome...one of the rare and "exotic" birds diagnoses of the neurology field.
“But those rare souls whose spirit gets magically into the hearts of men, leave behind them something more real and warmly personal than bodily presence, an ineffable and eternal thing. It is everlasting life touching us as something more than a vague, recondite concept. The sound of a great name dies like an echo; the splendor of fame fades into nothing; but the grace of a fine spirit pervades the places through which it has passed, like the haunting loveliness of mignonette.”
~James Thurber~
NORD is coordinating the observance of Rare Disease Day in the U.S. on February 28, 2009.
Copyright © 2009
Add to this toxic mix a rare disorder diagnosis and understanding from the social network of medicine, people, or family is severely taxed. An explanation of the rarity of my diagnosis became a learned evasive and vague one-liner of general simplicity, or a detailed monologue expertly refined from repetitive recitation. Reactions vary from indifference, intrigued, melodramatic, or a blank stare.
I received my diagnosis of Stiff Person Syndrome in 1994, following four years of progressive symptoms of severity that led to disability...a life sentence since there isn't a cure. Stiff Person Syndrome, (SPS), was known as Stiffman Syndrome when I received my diagnosis...a frivolous name for a possible life-threatening, definitely life-altering diagnosis.
So began my SPS tour: appearing at various medical facilities for all my health issues, a team of personal care physicians, continual clueless consumer representative phone calls, lab tests...the list goes on...my time and my dime.
So often, I am the prize albino monkey on display at the medical zoo. I welcome the opportunity to explain my condition...the "rare" find. I have had some interesting reactions in teaching my one-on-one course to the "up and coming" residents of the medical community.
My diagnostic neurologist left me alone with one his proteges to see if this young doctor could correctly figure out my diagnosis. When he actually nailed it, in a burst of exuberance, he smiled broadly with an emphatic, "Yes!" (Aced the extra bonus question on a pop quiz.) Inwardly, I was amused as he quickly recomposed his physician's professional demeanor.
I lost one child to a recessive genetic disorder, Spinal Muscular Atrophy. To date, there isn't a genetic relationship between SPS and SMA. One young resident sincerely asked a blonde moment question, "How does it feel to have two exotic illnesses in your family?"
Well, let me think about this. My child died and I can't walk, move well, am in constant pain, and am disabled. Exotic? My imagination conjures up a tropical and secluded beach overlooking turquoise waters...the ability to run in the surf holding my child's hand as she runs along with me.
My second neurologist enjoyed having the occasional resident in attendance whenever I had an appointment. In educating the young-doctor-in-waiting, I was the rare exotic bird of neurology in his practice...the elusive diagnosis.
It is a positive to be able to share and hopefully enlighten the medical community and others about my condition, but I am the one who should be paid.
Stiff Person Syndrome...one of the rare and "exotic" birds diagnoses of the neurology field.
“But those rare souls whose spirit gets magically into the hearts of men, leave behind them something more real and warmly personal than bodily presence, an ineffable and eternal thing. It is everlasting life touching us as something more than a vague, recondite concept. The sound of a great name dies like an echo; the splendor of fame fades into nothing; but the grace of a fine spirit pervades the places through which it has passed, like the haunting loveliness of mignonette.”
~James Thurber~
NORD is coordinating the observance of Rare Disease Day in the U.S. on February 28, 2009.
Copyright © 2009
Saturday, January 3, 2009
All aboard - 2009
A new year. Always a pivotal time where regrets are relived, outlooks revived, dreams resurface, and resolutions are kept promises to oneself until February, from my experience.
December is a blur of several doctor appointments, delayed infusion script, a bout of flu, and oral surgery, along with my regular "issues." A new health issue surfaced...a severe vitamin D deficit requiring a bailout of prescription-strength mega D for two months, hopefully to avoid a future bone breaking calcium absorption depression.
Though sometimes down for the count, I still enjoyed a festive holiday, trimmed a tree, did some baking, made a ham dinner, and shared in some fun Christmas celebrations. Shopping was navigated as Nascar racing,(aka a Christmas mall racetrack), before I discovered the wonder of Internet gift certificates. Next year's Christmas shopping...one of my 2009 resolutions...will be dressed in festive PJs, sipping flavored coffee, and casual online surfing for the "right gift" for those on my list.
January 1st was a quick gasp of air before I jumped on the 2009 train of normal life frenzy in the chronic illness coach. I would hang on to my heat, but I lost it a long time ago. 2009 looks to be an aggressive ride, a challenging destination in mind while my Chronic Raiders are in relentless pursuit. "Eat my dust." Me or the Raiders?
I am deeply grateful for my blessings of 2008 and eagerly look forward to life and the opportunities of 2009. All Aboard!
“The object of a new year is not that we should have a new year. It is that we should have a new soul” ~G. K. Chesterson~
Copyright © 2009
December is a blur of several doctor appointments, delayed infusion script, a bout of flu, and oral surgery, along with my regular "issues." A new health issue surfaced...a severe vitamin D deficit requiring a bailout of prescription-strength mega D for two months, hopefully to avoid a future bone breaking calcium absorption depression.
Though sometimes down for the count, I still enjoyed a festive holiday, trimmed a tree, did some baking, made a ham dinner, and shared in some fun Christmas celebrations. Shopping was navigated as Nascar racing,(aka a Christmas mall racetrack), before I discovered the wonder of Internet gift certificates. Next year's Christmas shopping...one of my 2009 resolutions...will be dressed in festive PJs, sipping flavored coffee, and casual online surfing for the "right gift" for those on my list.
January 1st was a quick gasp of air before I jumped on the 2009 train of normal life frenzy in the chronic illness coach. I would hang on to my heat, but I lost it a long time ago. 2009 looks to be an aggressive ride, a challenging destination in mind while my Chronic Raiders are in relentless pursuit. "Eat my dust." Me or the Raiders?
I am deeply grateful for my blessings of 2008 and eagerly look forward to life and the opportunities of 2009. All Aboard!
“The object of a new year is not that we should have a new year. It is that we should have a new soul” ~G. K. Chesterson~
Copyright © 2009
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