What the Heck are They Talking About: Neurological CFS

DailyCandy Lexicon

lex·i·con n

1.    a reference book with an alphabetized listing of words and their  meanings, especially one dealing with an ancient language

2.    the entire stock of words belonging to a branch of knowledge or known by somebody

DailyCandy sezs:

We at DailyCandy love to pick up the scoop on things. And then, our private obsession. Words. We love listening to people and hearing what they're using.

All three people who have read my About Me page know that I also love words. Some might even say I am obsessed with words and correct word usage. It is an obsession with many journalists of my acquaintance. Some of my favorites from the DailyCandy Lexicon:

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D.I.T. (n.):

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1.    A diva-in-training. (No further explanation necessary. You know who you are).

"Mitin"

More information than I needed.

"I have that T-shirt."

Been there, done that.

Forgetting yourself: Love and an "Inappropriate" Sense of Humor

"Love is an attachment to another self. Humor is a form of self-detachment a way of looking at one's existence, one's misfortune, or one's discomfort. If you really love, if you really know how to laugh, the result is the same: you forget yourself."
                                                                       - Claude Roy

Nuff said.

His entire career took place after my bedtime

As anyone will tell you, including myself and perhaps especially my kid sister, the world isn’t all about me. And that’s a good thing: otherwise the world would die of boredom instead of laughter.

I guess you could say a little bit of laughter departed this world last night but don’t worry; he’ll be right back…in my memories as well as yours.

And since I'm technically "unemployed" and have had all day to cruise the web looking for Johnny between naps let me give you the quickie tour.

Earthquake mode happens every morning on my computer when the venerable grey lady of journalism hits my email with a thud. Make that what sometimes seems to be the weight of the world. This morning was no different.

So let’s start there. The New York Times obituary on Johnny Carson is the usual graceful mix of fact and commentary, as well as a wonderful collection of audio and video clips, and still photos. 

Read their obit and you will know what I'm saying when I note I was also close to flooding as I read about the second to the last 1992 episode where Johnny and the audience were in tears by the time Bette Midler finished singing "One for My Baby (And One More for the Road)." Sniff, sniff. Now how does that tune go again?

If all this leaves you with a sudden yen for those late night memories you can rent them but you best be right quick if you want to see them this year. And since being distracted is definitely what I do best, the Divine Miss M always reminds me of my favorite of all her movies, The Rose (1979).

Anyway, like many others have declared before me, I have a soft spot for kids and animals and some of my most vivid "kid" memories of the Johnny Carson show involve Joan Embry and the animals from the San Diego Zoo .

So first I'm bawling and then my bladder also loosens (darn Midorine)just reading this 2001 quote from a tribute to Johnny. 

Monkey Goes Potty on Johnny Carson's Head - Do You Remember?

"Going back to The Tonight Show with Johnny Carson for a moment, one of the funniest things I ever saw ANYWHERE was when Joan Embry from the San Diego zoo was visiting and brought a marmoset to the show. The tiny monkey climbed on top of Carson's head and relieved himself! You could actually see it dripping down Johnny's forehead! I laughed so hard, I almost had the same problem as the poor marmoset!" –twittylady.

Ever the debonair host, Johnny apparently told Joan, "I'm glad you didn't bring a baby elephant."

Regular readers know that most of my own monolouges often include my version of six degrees of … . The first two names that come to mind in connection with Mr. Carson are Jack Paar and David Letterman. In fact this inquiring mind wants to know if a new joke writer made the Letterman top ten.

Jay Leno also comes to mind, but I’m sorry, but whenever someone says, Jay Leno, I never think Johnny, I always think coolest art collection in a garage. Speaking of cars and art, forget the code, did you know Da Vinci invented a car?

Another sensible person who knows the world isn't all about him, Forbes quotes Mr. Leno as saying, "Having these cars is great fun," Leno says. "And there's a sense of history to all this stuff. We don't really own these cars, we just keep them for the next owners."

As the proud owner of a Caribbean blue hoppity named Abigail, I can relate to that minus the bling ($$$$$$$$$$$$).

For both those of you unfamiliar with my car -- and all the guys who are inevitably clustered around the open engine compartment - hint it's actually in the back – every time I come back out to her after paying for my gas -- "Abby" is a 1974 Volkswagen beetle originally purchased for one of my kids.

Exasperated Shop Owner: “Ms. Duprey, you need to get a real car”
Me: ever the smartass and four out of five staff members agree: “You’re just jealous because everyone honks and smiles when I drive past” -  sounding like my mom’s vintage sewing machine on steroids I might add.
Sorry, I searched, but Amazon doesn’t have a sound clip for sewing machines on steroids. 

And while I’m tipping my sun visor and paying tribute to important people, let’s not forget Williams Auto and Radiator Repair where the owner and staff – Marvin, Henry, Mr. P, Rooster, Derek, Horace, Joe, Nakia, and especially Gary, have done more CPR on my baby than a crash dummy and have generally kept her in one piece for years. Did I mention Henry finally painted the oil putter in part red and the little stick thing red also because I can never remember how that works. He's my hero.

And while I'm at it, hats off to Williams office manager and all-around babysitter, Phyllis who keeps all of the guys organized and in one piece! My bling (<$) has been paying their salaries for years. Not really, but you already knew that.

Oh okay guys, quick take a bow and exit stage left, because Doc Severinsen's got the band going again.

Leno, Parr, and Letterman aren’t the only comedians in town when it comes to Johnny.“How Johnny influenced my life,” by comedian…

Hey, hey! Who says I can only have so many hotlinks in a post, you are seriously messing with mah rhythum here! Oh okay,I guess it is your server.

Well anyway if you are willing to do the cut and paste thing, some comedian commentary can can be found at the following links.

http://news.bostonherald.com/national/view.bg?articleid=64919&format=  http://www.canada.com/entertainment/story.html?id=d363b443-488b-4f88-812a-fe844de99b39

Oh, oh, look out, grab a carrot! Incoming ping-pong balls! Oooppps. Distracted again - Dunn, dunn dun dunnn...THE TRUE STORY OF MY LIFE ON ENCEPHALOPATHY coming to a blog near you. But, seriously folks if you like comedy in general, tributes to Johnny and Jack Parr on this site are included along with the Kaptain, who in my humble estimation, is also one of the greats. Maybe because he was before my bedtime.

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Like all my links, the site where I found all of the above is truly phat. Just surf on over to: 

http://www.jerrypippin.com/Memories_On_Demand.htm

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On a little more formal note, Mr. Carson's biography can be found here: Presidential Medal of Freedom Recipient Johnny Carson
http://www.medaloffreedom.com/JohnnyCarson.htm

Okay, I get it, the cut and paste thing is getting a little stale. It's cool. I can be down with that.

And as Johnny would say, "I'll be right back..." with another post.

This baby is mine: Flybar Model 1200

po·go stick n

a strong metal pole with a spring at the bottom
and two footrests to stand on, used to jump up
and down or hop along on for play or exercise
• Elevation potential of over five feet--dramatically greater than any pogo on the market

We all know,are or have met people who preface every conversation regardless of subject matter with the same phrase over and over.

Whether it is grandma’s tendency to start every conversation with “In my day…” or in the words of a musically inclined sex nerd whose every utterance included the phrase, “Onnncccce, at band camp…,” it’s there.

At my house over the past four years everything begins with, “Once I receive my SSDI …”. Please do not mistake this phrase for a never-ending pity party: At its most elemental, reality is simply reality: facts unchanged even by healthy, and I would argue, essential “attitude adjustment.” My bottom line: Life goes as life goes and nobody asked you.

“Once I receive my SSDI …” is usually attached to survival issues: minutiae like homelessness; rebuilding a credit rating totaled by overwhelming medical bills and forced, but utterly unwelcome unemployment; the amount of “discretionary” income for such trivialities as rent and food, available after paying for prescription drugs from Canada. (I'm every bit as patriotic as the President, but unrelenting reality remains this: we don't have the same level of personal funds in our individual checking accounts. Which I have a sneaking suspicion might be why we don't always agree on policy issues.) You get the picture.

But recently, dailycandy.com whispered in my ear about the Flybar Model 1200, a fly pogo stick for the kid in all of us. When I saw it a huge grin surfaced. I was so all about this.

I may be 90-years-old when I win my SSDI case and finally receive spendable bling, but I'm patient, I can wait tap, tap, tap.

You see, encased in this silvery frame is the joy of my childhood, memories of the cleansing pleasure of hours upon hours of skiing, including spectacular "burn-and-crash" aerial acrobatics natch in my teens and twenties. And though my body may be a tad physically impacted by chronic, and quite organic CFS/ME and Fibromyalgia - not neurasthenia imported from the 80s, make that the 1880s - my spirit “lives strong.” 
Related live strong reading: The Wrist band gap.

I may have to be swaddled in protective football gear, bubble wrap and duct tape from head to toe and place two sturdy spotters on either side of me, confining me to a pillows piled to a depth of six-feet high, but I am going to  bounce, bounce, bounce, bounce, bounce! Okay, excuse me, I am exhausted just thinking about it, but the grin lingers on and on.
Fine print: And I double, no triple, no quadruple guarantee you that my soul will soar with joy, far exceeding the gravitational limitations of the physical bounce.

Folks I’m not done living - heart, soul, passion and mind - not by a long shot. So once it gets here, don't be a stranger: Come on by! 

More fine print read very quickly: BYOI (bring your own insurance), BYOB (bring  your own bubble wrap) required for admittance.  As well as, I refuse to define myself by the limiting, dry, scientific minutia of physical disease and you shouldn’t either etcetera and so forth.  And never forget that if the toy is “mine” I can have as many turns as I wanna. :D

Did I mention the tree house?
Boy this is a lot of fine print: “…Treehouses lift the spirits. They inspire dreams. They represent freedom: from adults or adulthood, from duties and responsibilities, from an earthbound perspective. If we can't fly with the birds, at least we can nest with them…”

liv·ing adj

1.    alive, not dead

2.    realistic or true to life

3.    interesting in a way that is relevant and useful

4.    designed for living in, especially for social and

       recreational activities

5.    still used or in existence

n.

2.    a means of sustaining or maintaining a way of life

3.    quality of life or the way in which it is lived

       npl

       people who are alive (takes a plural verb)

Encarta® World English Dictionary © 1999 Microsoft Corporation. All rights reserved. Developed for Microsoft by Bloomsbury Publishing Plc.

Worse than I

As a photo instructor I often asked my students to tell a story using an image without a caption as the jumping off point. Sometimes the words were poignant more often we got into really outrageously funny battles to top each other and I laughed as hard as anyone. What mattered was not the details, but giving voice to the silent language of emotional content. 

This events of this past week forcibly reminded me of the visual storytelling I taught in what seems like another lifetime. Disabled or not, like all photo editors I was glued to the wires this past week, watching a cascade of images of the aftermath of the tsunamis that stole so much from so many this past Sunday.

Unlike the unceasing clamor of the newsrooms, I viewed these images in complete silence; my head filled with the stories that only the dead can tell.

As may be for many others, images of death and grief dissolve the boundaries of culture, religion and race, leaving my soul twisting, my heart clenching, my steps swiftly seeking out my only available child: her protesting squeals smothered by kisses, holding her tightly, attempting to ward off all danger with the ferocity of love. If I could have gotten my hands on my older ones at that  moment they would have faced the same physical fate. As it was, I too know the powerless uncertainty that goes with physical distance from a loved one.

But, this time the stories resonated at a far deeper level in me: they forced me to lift my glazed and staring eyes and realize that belly button lint was obscuring my vision, not death.

You see, the reality of nonpsychiatric CFS/ME and fibromyalgia, sometimes feels as if they've drained my life of all color. A form of living death I moan more or less meaning it, but, be that as it may, I am alive. And while my pleasures may be simple, they are still mine. And no one can take them from me without my permission.

Okay I see your point, but natural disasters and wars never ask anyone's permission anyway.

Like so many others, including you, I am weathering a disaster of incomprehensible magnitude, unsought, and unlooked for, and yet, I am still here. A rather small and battered scrap of humanity still clinging to life I snort to myself with a roll of the eyes.

Yet, hope and joy remain mine for the taking just as they do for all living beings.

Unlike those still forms whose stillness is so unyielding: a grotesque parody of the life-giving renewal of sleep, unlike my own parody that always yields to morning light.

We do live and no matter how little we have, that is priceless.  Please, please consider giving back to the world even if all you have is a budget busting $5, even if parting with $5 seems impossible. I know for us, my daughter and I discussed it and decided that more PBJ sandwiches wouldn't kill us. That's not melodrama just the reality of disability and poverty. And yet I'm must beam with pride a little here. Generous relatives and friends contribute much of the sparkle to my daughters world and yet without discussing it with me, my daughter, like hundreds of other kids, took her Christmas money into her school to contribute to schoolwide donation. She may be one ill little kid, but her heart and soul are strong and there is nothing crazy about her.

Okay, so I just can't resist the occasional aside, but be that as it may, my point is unwavering: maybe, sometimes, giving is the best possible way of acknowledging that life is worth living even if the trigger is the silent language of loss.

Donations can be made through both the Red Cross and Doctors Without Borders sites. If you wish to donate to the Red Cross with the click of a button, Amazon.com home page has made that possible for their readers. As of December 30, 2004, @ 7:20 EST,  94,903 Amazon.com visitors have donated $6,107,582.21 to the Red Cross. You may also wish to donate through Oxfam.

I would also like to mention that you can also donate from the home page of the British Medical Journal along with other websites of all persuasions. It reminds me that all of us are human beings capable of great compassion, as well as the overwhelming talent to make a horse's patootee out of ourselves.
Shhhh! Of course I mean BMJ not me and other people who think like I do -are you daft?! LOL fellow travelers, laugh out loud we are pretty hilarious bunch.

 

"May The Lord bless thee, and keep thee: the Lord make his face shine upon thee, and be gracious unto thee: the Lord lift up his countenance upon thee, and give thee peace."   -Numbers 6:24-26

29, January UPDATE: If the idea of bearing witness through the photographic medium interests you, you may wish to read the words of Mehul Srivastava, 24, a reporter for the Dayton Daily News who calls it the "heaviest weight in the world."

 

Million Letter Campaign May, 1, 2005

Not a number? Not just a statistic? Help put a human face on the neurological disorder, Chronic Fatigue Syndrome and rheumatological disorder, Fibromyalgia. PWC Pattie Caprio is asking all of us (hopefully at least a million) to write a one page letter to be sent to five or more media outlets all on May 1, 2005.

According to Pattie, everyone needs to send the letters out ON THE SAME DAY as everyone else, so that the letters are received at the same time and just prior to Fibromyalgia Awareness Day (International ME/CFS Awareness Day) on May 12, 2005.

Although letters have been requested for survivors of CFS/ME and Fibromyalgia, I would encourage the people that love us and care for us to write a letter also describing these disorders from either their point of view or to advocate for someone too ill to advocate for themselves. You can do it. You have four months to work on it a little bit at a time. Ask a friend or neighbor to address the envelopes for you. Or in my case help me figure out print for the umpteenth time. LOL.

Pattie requests:


Your ONE PAGE letter should contain the following:

1.  YOUR NAME

2.  LOCATION (City, State and/or Country)

3.  OCCUPATION or achievements prior to FMS/CFIDS

4.  DATE OF ONSET of your FMS/CFIDS (and what you think caused it)

5.  SYMPTOMS you suffer from

6.  HOW this illness has affected your career, finances, relationships, family, etc. (be sure to mention any LOSSES you have experienced - oh yeah, and keep it under one page. LOL)

7.  WHAT you are asking for:  e.g., recognition of this illness, for doctors and lawyers to take FMS/CFIDS seriously for disability cases, for understanding from family and friends, for money to be spent on research for a cure, for media coverage, or whatever else comes to mind.

Being a wise woman, Pattie notes that most of us could write a book about our illness, assuming we have the energy, but still asks us to please limit our letters to one page. Instead of a chatty letter, you may wish to send a bulleted outline of the above points. Note: Montel Williams has MS and Mike Wallace of 60 Minutes has had CFS/ME.

1.  THE FIRST LADY, WHITE HOUSE

1600 Pennsylvania Ave., NW

Washington, DC 20500

2.  Story Editor

20/20, ABC NEWS

147 Columbus Ave., 10th Floor

New York, NY 10023

 

3.  FOX NEWS

5151 Wisconsin Ave., NW

Washington, DC 20016

4.  Story Editor

60 MINUTES, CBS NEWS

524 West 57th St.

New York, NY 10019

 

5.  Senior Supervising Producer

MONTEL WILLIAMS

433 West 53rd St.

New York, NY 10019

CANADIANS:  Please use the following address instead of the White House (#1 above): CANADA PENSION PLANS, HUMAN RESOURCES DEVELOPMENT CANADA, DISABILITY DEPARTMENT, P.O. Box 2710, MAIN STATION, EDMONTON, ALBERTA,CANADA,T5J 4C2

 

Other suggested recipients are:

 

Dr. Phil Show

5482 Wilshire Blvd., #1902

Los Angeles, CA  90036

 

Barbara Walters

23852 Pacific Coast Hwy., Suite 401

Malibu, CA  90265

 

Also, you can write your Congressman by visiting:

http://www.arthritis.org/advocacy/priorities/priorities_contact.asp

Dominie Bush adds: 
dom@fms-help.com

Please remember that we don't want to dilute the quantity of our letters to individual recipients, so if you can only send five letters, please send them to the five MAIN addresses listed above. Oprah Winfrey is not included in this list, because she no longer accepts unsolicited input for her shows.

We need to build enthusiasm and momentum in the fibromyalgia community between now and MAY 1, 2005!  Please tell fibromyalgia support groups, friends with FMS/CFIDS, and even doctors who have experience with FMS/CFIDS patients and understand this condition.  Forward this information to anyone you know with FMS/CFIDS or post it on fibromyalgia newsgroups.  We need to get the word out!

I don't know of a better way to accomplish our goal of FMS/CFIDS Awareness!  It will take just a little effort from each of us in telling our own unique FMS/CFIDS story in "one page" form and sending it to people who have power and influence in our society.  Remember, we are doing this not just for ourselves, but for millions of sufferers worldwide.

P.S. Million Letter Campaign T-SHIRTS & SWEATSHIRTS are great for individuals or support groups!   Pattie designed the logo which appears at the top of this page and also on the shirts.

For more information please go to:

http://www.fms-help.com

Sorry, I still haven't found a way to add hotlinks to my posts. :(
TADAAA! I changed over to Netscape 7.2 and suddenly hotlinks were available. Isn't technology a marvel. Ooops I think I just dated myself.

Carl'a Stevens on Life with Chronic Illness

Carl'a Stevens: My description of my life with chronic illness . . ..

   In the simplest of words I want to say cheated, robbed, debilitating, crippled, my life stolen from me and anything else you can think of that explains the death of your old life as a human being on this earth. In other ways I can say I found a new life, with more meaning. A life that has humbled me, teaching me new ways to adapt to what has been changed.

I have watched myself go from walking miles to walking only minutes. I have seen my face change from vibrant to stressed and my body from youthful to aged in a matter of a couple years. I have seen myself go from running up flights of stairs to crawling up them and scooting down them on my rear end. At times I wonder, am I 31 or am I 71?

   I question my future . . . Will I still be walking or in a wheel chair? I use a cane on bad days, but will it become a way of life for me later? Will I be able to go to my son's football games shouting from the stands, or will I be on the sidelines watching in uncomfortable pain?

   People who do not understand this illness cannot possibly understand what goes on in our thoughts daily. The questions, the concerns, the worries.

No matter what we are told about taking it one day at a time and how we need to relax and make the most of our life, no matter how often we hear this, it still doesn't seem to leave our focus. It is what we think of when we wake up and what we think of when we go to bed at night. It is in our thoughts all the time because we feel the relentless pain and fatigue all the time. We wake up feeling it, we focus our meals around it, we socialize based upon how we feel for the day and how much we can handle activity wise, we take meds or don't take meds depending on what we are going thru . . . all these things affect every aspect of our lives. It is an indescribable feeling. Those who have this illness know the unpredictability of it. We never know how we are going to feel from one hour to the next. It all depends on what "IT" wants to do.

    Once in a while we find ourselves having a day that is so blissful . . . no pain. . No fatigue, everything is like a dream. We forget our limits in that moment and live the day out like we are totally normal.

Then just as quick as it has come, it leaves and our bodies respond to all the activity we brought upon it on the good day. In spite of how gloomy this all sounds, I have found peace with it. I do have bad days as most all have with this, but yet in the midst of it all, I have learned how to manage it some and how to live with it. I have no choice but to live with it.

I do not want to become a statistic to the suicide trend that Fibro had become for many. I don't want to give up and let it dissolve my life either. I am not ready to give into it all yet. I am not ready to accept that I am disabled due to it. I am not going to let it take my dignity and rule my life. It has to a certain degree, but it cannot have it all.

     I am still my own person, my own woman wanting to have some control yet of my body. I want freedom to make choices on my own whether or not I can or cannot go to the store, walk to the park with my son, go to a family function, work, and talk on the phone.

All these things can be robbed completely from me but I won't let Fibro take what is left of me. I have no control on to what degree the Fibro wants to attack me. It can bring me to my knees, but it will not defeat me.

I will not let it take from me my as a whole, my dreams, and my independence. I need to hang onto what little bit I have and fight it all with the will power I have. I am too young to suffer this way and say, ok you have me. I may have to suffer, I may cry, I may struggle, I may yell and feel robbed, I may complain and I might try to find a cause of it all, but yet, I am still here with it, living, breathing and I am still alive.

I have a purpose and am trying to find a reason for it all, a meaning for why it has selected me. I know I am not alone and there are others who feel as I do. If I focus on the ifs, why me, and what will become of me I am only wasting my time in finding meaning to it all.

    I will never find the purpose for it, but I know that God knows His reasoning. I am thankful for this illness in a way because it has changed me in so many ways that are positive that I had never expected.

I have found peace in knowing that thru this illness, I can use it to help change the way people treat those with chronic illness. I have an opportunity to help change the world's thinking and help spread awareness and hope. 

If anything I can say about all of this is that I have been humbled as a person, sensitive to others needs. The desire to find all the answers has been instilled and the wanting to help others cope ...This has been my therapy. Trusting the Lord with every aspect of my life and finally learning to let go and let Him take over. Knowing that I don't have all the answers and trusting that some day I will see the true reasons why.

Until then, I would be selfish in just sitting and complaining and not doing anything with it. I think in all our lives with Fibro and chronic illness in general, we find this to be true. We have a bond that no one can even understand.

I have great supportive friends, supportive Husband and family, yet I know they cannot possibly really know what it is like to feel like you have the flu everyday. They don't know what it is like to hurt and ache all the time. Their headaches are our good days.

I am grateful to the people in my life who have made a difference and do support me though. They help me keep going. With my faith in God, my family and friends, life with their burden may seem much lighter. 

It is important to find support. Some aren't as fortunate and have no one in their lives, but finding a support group or support network is the best way to cope when you feel you have no one. The groups develop friendships that last a lifetime and the much needed support to handle life's tough days.

~Carl'a Stevens

Kate's note: Sometimes (probably many times) someone else says it better than I, and on such occasions I hope to post the thoughts of others in addition to my own. However, nothing will ever be included without the author's permission, which Carl'a has graciously provided. Carl'a's website is chock full of information and provides a spiritual home for people who are trying to reconcile their faith with what is happening to them. Please take time to visit her.