Thursday, May 31, 2012

Austin's Mysterium Closing Storefront, Will Continue Online & At Events: Beer Brass & BS to Continue As Scheduled



IMPORTANT ANNOUNCEMENT FROM SAM TYLER, OWNER OF THE MYSTERIUM

Hi All -
Well, after serious consideration, number-crunching and soul searching, I have made a decision. The Mysterium will close it's doors at the end of the day on June 30, 2012. It turns out that there just isn't enough steampunk at this time to support a brick and mortar storefront in Austin. For that to happen, more people will have to start thinking of steampunk less as a sophisticated game of dress up and more as a lifestyle. Unfortunately, my experience tells me it's not there, yet. With my run of bad luck last year, including forced store moves and the horrifically expensive ladder accident, I just can't keep on as I have been.

... But don't panic!

The Mysterium will remain with an online business model for the foreseeable future (and SO MANY NEW THINGS WILL BE ADDED TO THE WEBSITE!), and Mysterium events will continue. Beer Brass and BS will continue at Opal Divine's once a month, The Mysterium may represent at 1st Thursday occasionally, and you may even see us at a few conventions!

Most exciting though, is that I am working on creating Steampunk/Dark Victorian events in and around the Austin area. A couple of these are already in preliminary negotiations! These are projects that I could have never pursued while also maintaining my storefront – and if they come together, they promise to be unique, exciting events that will hopefully spin your brains right there in your skulls..

Also, since I'm moving yet again at the end of June, and want to move as little as possible, I have things to sell you at cost or less - drop front trousers, men's vests, hats, pocket watches, flasks, jewelry, random crafting supplies... A full list of those sorts of things will hopefully be forthcoming soon.

Lastly, thanks so much for all the incredible support I have received from all of you, particularly Lanora Davidson at Things Celtic, for giving me space for these last few months, and Lisa Turner of Turner's Tokens for all of her many forms of support and purple octopuses. Many thanks also to all the awesome customers and vendors/makers who have become my friends – if I could list them all here, I certainly would! If nothing else, opening The Mysterium has thus far been an excellent excuse to rub elbows with some of the most amazing people I've ever known, and for that alone, I count it as a ringing success.

Lastly Lastly and For Reals this time... I truly don't think this is a moment for sadness. I don't feel I've failed – evolution is a condition of life. Adapt, or die. :)

Vive la evolution!!!

Sam Tyler
~The Mysterium

Wednesday, May 30, 2012

Sometimes the Creepy Crawly Sensation in Your Legs is Just a Creepy Crawly - GBS

When I was still dealing with a lot more of the creepy crawly sensations in my legs from GBS I felt the sensation just working its way up my calf.

When I clamped a hand down where it was the worst I felt something underneath my jeans. O.O;;;

I awkwardly stumbled back to the bathroom and got out of my jeans the fastest time ever to find a big centipede had crawled its way up to my knee. x.x

I hate those guys... the rain always drives them into our apartment.... XD

Johnny Dickinson hit with Guillain-Barre Syndrome GBS



Just heard that the great Johnny Dickinson is suffering from Guillain-Barre syndrome & cancer.

Download a benefit album here:
http://johnnydickinson.net/1-2-3-music-store/process.php?pname=ShowAlbumDetailsProcess-Start&CategoryID=CategoryID&AlbumID=9

Listen to his music on the comment page here:
http://mazzycranks.com/johhny/?page_id=436

A good review of the situation can be found here: http://www.bluesinthenorthwest.com/index.php/2012/05/29/johnny-dickinson-news-and-benefit-album/

Friday, May 25, 2012

Comicpalooza Map

For those whose PDFs might be having issues with what is on the Comicpalooza site:






Tuesday, May 22, 2012

Robert (Bob) Benson, Founder of GBS/CIDP Foundation International

It is with deep regret the GBS/CIDP Foundation International announces that Robert (Bob) Benson, the inspiration for our Foundation, died on May 17th from cancer.

Bob, who had Guillain Barré Syndrome in 1979, founded the organization, along with his wife, Estelle.

At his family's request, contributions in his memory can be made to:
The Robert and Estelle Benson Fellowship in Neuromuscular Neurology
c/o GBS/CIDP Foundation International
104 1/2 Forrest Ave.
Narberth, PA 19072.

Please call 610-667-0131.

Connect on Twitter: http://twitter.com/#!/GBSCIDP
Connect on Facebook: https://www.facebook.com/#!/gbscidp
Visit the main site: http://www.gbs-cidp.org/

Sunday, May 20, 2012

Had a pretty awesome weekend... GBS Year 3 Celebration

Had a pretty awesome weekend... :3


Celebrated 3 years of kicking GBS' butt by going out and hiking at McKinney Roughs Park. Lots of green trees, wild flowers, and crazy colored lizards. :3 Dipped out toes in the cool Colorado River midway too. Maaaaybe got a little dehydrated but still fun.















After the hike, headed into Bastrop and grabbed a hotel so we could spend more time exploring. Found an awesome Cheese Steak place with delicious curly fries. Then went down to main street and checked out the local shops. Found a great book store that make an awesome frozen chai latte. ♥


Then stumbled across another shop with a wide assortment of wines, cheese and yummy mix foods. Got Dr. Pepper Beef Jerky and some chocolate wine called Choco Noir. :3


Headed back to the hotel and wandered around outside for a bit bug hunting... :3


Crashed for the night and then got up to go back and explore the Main Street and Riverwalk area. Checked out the local park and enjoyed watching the geese and ducks fighting for bread. :3 Enjoyed time just watching the river from a swinging bench and then headed back in town. ♥ Hit the wine shop again and grabbed some fruit wine before heading out.






Stopped by the Bastrop Sugar Shack and had a slice of lemon berry cake out on the patio with a field of wild flowers right next door. ♥ Then headed out for home.



Good to be home but we are going to have to go back to Bastrop again...
Maybe for the 4 year celebration. :3

For now, I believe it is nap time. :)

Teaser for The Mechanical Grave



A short teaser for THE MECHANICAL GRAVE, a new steampunk horror show. A longer trailer will be coming soon before THE MECHANICAL GRAVE debuts this Fall.

The year is 1895. Steam-powered ships fly through the air. Clockwork robots have replaced servants. And a grisly murder has taken place in the dark night of New York City. Called to the scene of the ritualistic murder, newly appointed police commissioner Teddy Roosevelt discovers Detective Wayne and his police officers power usurped by two special investigators appointed by the White House: Occultist Edgar Allan Poe, a clockwork automaton housing the soul of the literary legend, and Mrs. Emma Entwistle, a dangerous assassin with a unique connection to the otherworld. When they elicit information from the demon Neshrew, a much darker and more dangerous plot of world domination is uncovered.

GRAB UPDATES ON FACEBOOK: http://www.facebook.com/TheMechanicalGrave

Thursday, May 17, 2012

May is an important month for Turner's Tokens! GBS

May is an important month for Turner's Tokens!

On May 18, 2009 I was diagnosed with Guillain Barre Syndrome as my body quickly became fully paralyzed. It was during my recovery that I discovered Steampunk. I began crafting jewelry to regain strength in my back, shoulders, arms and hands.

May is also Guillain Barre Syndrome Awareness Month! I got very aware! >:3

Take a moment a check out the special section on my blog to find out more! Spread the word; knowing and identifying the signs and getting treatment fast are part of the fight!

http://www.turnerstokens.com/p/gbs.html

Monday, May 14, 2012

New Collage!

Made a collage for a friend recently. :)


  

The adorable center fox is by a great artist named KitSkylark on Devart:


Be sure to stop by and show them some love! http://kitskylark.deviantart.com/

Sunday, May 13, 2012

Happy Mother's Day!

Happy Mother's Day, whether your children have two feet or four paws!

She

She held my hand in my first steps

She cheered me on as I struggled for those steps again

She stood by my side as my eyes fell closed

She shared her strength when I was weak

She gave me love when I had none for myself

She pushed me on when I felt I had nothing left

She fought my battle with me

Friday, May 11, 2012

The Road Not Taken

Click for full view.

The Road Not Taken
Robert Frost (1874–1963)
 
TWO roads diverged in a yellow wood, 
And sorry I could not travel both 
And be one traveler, long I stood 
And looked down one as far as I could 
To where it bent in the undergrowth;         
 
Then took the other, as just as fair, 
And having perhaps the better claim, 
Because it was grassy and wanted wear; 
Though as for that the passing there 
Had worn them really about the same,        
 
And both that morning equally lay 
In leaves no step had trodden black. 
Oh, I kept the first for another day! 
Yet knowing how way leads on to way, 
I doubted if I should ever come back.      
 
I shall be telling this with a sigh 
Somewhere ages and ages hence: 
Two roads diverged in a wood, and I— 
I took the one less traveled by, 
And that has made all the difference.

~*~*~*~*~*~*~*
No real reason for this post, more along the lines of why not post it? :)

Tuesday, May 8, 2012

Books Related to Guillain Barre Syndrome: GBS

Thaw
by Monica Roe
http://www.amazon.com/Thaw-ebook/dp/B0031Y64PM/ref=sr_1_4?ie=UTF8&qid=1336514130&sr=8-4
 Dane is an ass. A smart, gifted ass. Until Guillain-Barre paralyzes him completely, and though seventy-five percent of GB patients make a full recovery, doctors don’t know when—or if—he’ll regain the use of his body. About the Author: Monica Roe works as a traveling physical therapist. Originally from upstate New York, her work now takes her throughout the country, most recently to a small island hospital in southeast Alaska. This is her first novel.

Why didn't I die?
by Barbra Sonnen-Hernandez
http://www.amazon.com/Why-didnt-I-die-ebook/dp/B004PGO2CW/ref=pd_sim_sbs_kstore_3?ie=UTF8&m=AG56TWVU5XWC2
 Being one of seven people in the world with a severe case of Guillain-BarrĂ© Syndrome, a neurological disease that attacks the immune system causing temporary paralysis, Barbra takes you on her journey through this illness, facing the odds of losing her life but then having the spiritual strength to live and share this story with you. About the Author: Barbra Sonnen-Hernandez, wife, mother and business owner, was afflicted with Guillain-BarrĂ© Syndrome in 2008. She shares her story of having endured one of the most severe cases of this disease in the world. Her life today consists of being a motivational and inspirational speaker concerning her illness. Barbra lives in Round Rock, Texas, is married, and has two children.

Guillain-Barre Syndrome (American Academy of Neurology)
by George Dr Parry & Joel Steinberg
http://www.amazon.com/Guillain-Barre-Syndrome-American-Neurology-ebook/dp/B004INGZIQ/ref=sr_1_4?ie=UTF8&qid=1336514558&sr=8-4
Guillain-Barre Syndrome (GBS) is a disorder in which the body's immune system attacks part of the peripheral nervous system. Feelings of tingling and weakness increase in intensity until the muscles cannot be used at all and the patient is almost totally paralyzed. No one knows why Guillain-Barre strikes some people and not others, or what sets the disease in motion. What we do know is that GBS is now the most common cause of acute paralysis in Western countries since the virtual elimination of poliomyelitis with vaccination programs.

Blue Water, White Water
by Robert C. Samuels
http://www.amazon.com/Blue-Water-White-Robert-Samuels/dp/0984019413/ref=sr_1_6?ie=UTF8&qid=1336514558&sr=8-6
Without self-pity, former New York City newspaperman and prize-winning magazine editor, Robert C. Samuels tells his own harrowing story of medical survival. He's filled it with tears, humor, love and triumph. "Audacious, brilliantly written, Blue Water, White Water, is a rare, first-person look at a world that is often closed to the average person.

Calming Guillain-Barré
by Nancy Mount
http://www.amazon.com/Calming-Guillain-Barr%C3%A9-Nancy-Mount/dp/1465337474/ref=sr_1_2?ie=UTF8&qid=1336514558&sr=8-2
NANCY MOUNT, Ph. D. Natural Health, M. S. Chemistry, is a medical science writer researching breaking news in inflammatory diseases and conditions, antioxidants, anti-aging and longevity.

Guillain-Barre' Syndrome: My Worst Nightmare
by Byron Comp
http://www.amazon.com/Guillain-Barre-Syndrome-My-Worst-Nightmare/dp/1594579717/ref=sr_1_3?ie=UTF8&qid=1336514558&sr=8-3
 How does it feel to be trapped inside a paralyzed body? How does one cope with the total loss of control of one's life? And how difficult is it to regain that control?

A First Step - Understanding Guillain-Barre Syndrome
by Brian S. Langton
http://www.amazon.com/First-Step-Understanding-Guillain-Barre-Syndrome/dp/1553694112/ref=sr_1_5?ie=UTF8&qid=1336514558&sr=8-5
Part one of A First Step - Understanding Guillain-Barré Syndrome is a true, blow-by-blow account of the Author's encounter, as a healthy Canadian businessman, with a rare and devastating disease, Guillain-Barré Syndrome (G.B.S. for short). It describes his seven-month long struggle for life in 'Intensive Care' after receiving a grim prognosis, and his subsequent dogged determination to overcome the effects of that disease.

Learning to Walk Again: How Guillain Barre Taught Me to Walk a Different Path
by Ann Brandt
http://www.amazon.com/Learning-Walk-Again-Guillain-Different/dp/0595258239/ref=sr_1_13?ie=UTF8&qid=1336514558&sr=8-13
Guillain Barre Syndrome is strange combination of symptoms that includes paralysis in varying degrees. It strikes men and women, young and old. Often the primary care physician has difficulty diagnosing a GBS patient. After the symptoms have peaked and recovery has begun, patients expect to regain their old routines.However, many find their lives have changed in some way. A quest for information and a need to be connected with other GBS patients led Ann Brandt to walk a different path, away from community college teaching and toward writing and liaison work with other GBS patients. Patients need to feel connected with others. They are hungry for information about others experiences with the disease. Read how a sense of humor, faith in God, and a stubborn nature can work in recovery.

Up from the Abyss: A journey of personal redemption from the ravages of Guillain-Barrè syndrome
by Italo Savella
http://www.amazon.com/Up-Abyss-personal-redemption-Guillain-Barr%C3%A8/dp/0595363024/ref=sr_1_15?ie=UTF8&qid=1336514558&sr=8-15
I assure you, though, there is nothing trite about coming down with Guillain-Barrè syndrome. For the person hit by it, it’s war and revolution wrapped in one: A catastrophe, an upheaval, a devastating blow. But also an invaluable experience and a possibility for renewal.

Battling Guillain Barre Syndrome / Acute Relapsing CIDP
by Michael Joseph Kiser
http://www.amazon.com/Battling-Guillain-Barre-Syndrome-Relapsing/dp/1615000003/ref=sr_1_16?ie=UTF8&qid=1336514558&sr=8-16
Autobiography - Michael J. Kiser had been living a healthy life with no restraints what so ever in his life, which was up until of May 2006, which at this time Michael J. Kiser's body decided to turn on it self. This is a true story that tells about Michael J. Kiser's own experience living with an Auto-Immune System Syndrome called, 'Guillain-Barre Syndrome / Acute Relapsing CIDP', (Chronic Inflammatory Demyelinating Polyneuropathy). What is this Auto-Immune GBS / Acute Relapsing CIDP? This Syndrome is a cause of the Auto-Immune System reversing on itself to the point of attacking your body as if it was a threat to you causing the nerves to be attacked to a point where the Myelin Sheath that protects the nerves to be eaten. Which this stops your nerves from sending signals back and forth from the brain to control your muscles and of the feelings of the things, which you touch, are lost.

Guillain-Barre Syndrome: My Journey Back
by Shari Ka
http://www.amazon.com/Guillain-Barre-Syndrome-My-Journey-Back/dp/1426961278/ref=sr_1_20?ie=UTF8&qid=1336514855&sr=8-20
 It began with fatigued legs and the slightest tingle at the tips of her fingers. Within days the tingling and weakness had spread throughout her body. Her chest ached. Her legs burned. Her arms felt weak. She didn't know it yet, but Shari Ka was in for the fight of her life. Ka was diagnosed with Guillain-Barre Syndrome (GBS), a rare disorder in which the body's immune system mistakenly attacks part of the peripheral nervous system. She was hospitalized, and, as her condition deteriorated, she was placed on a respirator to allow her to breathe. GBS sapped the strength from her body. Paralysis crept in, and soon she couldn't swallow or even smile. The race was on to save her life. Shari Ka shares her inspirational story in Guillain-Barre Syndrome: My Journey Back.

Guillain-Barre Syndrome: Through the Eyes of a Mother
by Guylaine Barber
http://www.amazon.com/Guillain-Barre-Syndrome-Through-Eyes-Mother/dp/142691489X/ref=sr_1_24?ie=UTF8&qid=1336514855&sr=8-24
Guillain-Barré Syndrome is the true life story of a mother's journey as her young daughter faced GBS.

Guillain-barre Syndrome: Pathological, Clinical And Therapeutical Aspects
by Silvia Iannello
http://www.amazon.com/Guillain-barre-Syndrome-Pathological-Clinical-Therapeutical/dp/1594541701/ref=sr_1_31?ie=UTF8&qid=1336514855&sr=8-31
The Guillain-Barre syndrome (GBS) or Landry-Guillain-Barre-Strohl syndrome, also known as post-infectious polyneuropathy or acute idiopathic polyneuritis, is an acute acquired, frequently severe, monophasic autoimmune illness of the peripheral nervous system (PNS). GBS manifests itself with the clinical picture characterised by gait disturbance, pain, weakness, rapidly ascending symmetric flaccid muscle paralysis, areflexia with distal predominance (involving lower motor neuron), sensory disturbance, variable autonomic involvement, and increased cerebrospinal fluid protein without pleocytosis . Although GBS had previously been viewed as a unitary disorder with variations, it is today considered as a group of syndromes with several distinctive variants or subtypes. The aim of this book is to describe and discuss this disease that is not exactly rare but is almost the only inflammatory polyneuropathy and the most frequent cause of acute flaccid paralysis in general medical practice.

No Time for Tears: Transforming Tragedy into Triumph
by Dorris R. Wilcox
http://www.amazon.com/No-Time-Tears-Transforming-Tragedy/dp/1929175078/ref=sr_1_50?ie=UTF8&qid=1336515008&sr=8-50
Combining aggressive self-education, massive doses of positive thinking, a barrage of nutritional supplements and unshakable faith in Gods healing power, Dorris Wilcox achieved against the odds 95% recovery from Guillain Barr Syndrome, a potentially lethal neurological disorder. She gives sufferers from all debilitating afflictions the tools to acquire and maintain the positive mindset they need to triumph over their own adversity. Also included is an extremely helpful, comprehensive appendix of sources for additional information on Guillain Barr Syndrome.

The Darkness Is Not Dark: Overcoming Guillain-Barre Syndrome
by Regina R Roth
http://www.amazon.com/The-Darkness-Not-Dark-Guillain-Barre/dp/1594671095/ref=sr_1_49?ie=UTF8&qid=1336515008&sr=8-49
A wife's diary of steadfast love, lighthearted hope, and abiding faith through the duration of her husband's debilitating disease. Regina prays this book will inspire others stricken with neuromuscular disorders.

Guillain-Barre Syndrome: 5 Years Later
by Brian S. Langton, Sarah Ondrich, Patrick Hill
http://www.amazon.com/Guillain-Barre-Syndrome-5-Years-Later/dp/1412088720/ref=sr_1_51?ie=UTF8&qid=1336515008&sr=8-51
This book is about three people from different walks of life, each of whom survived a life-changing episode of Guillain-Barré Syndrome. It is three dramatic stories in one.

Going Full Circle : My Fight Against Guillain Barre Syndrome
by Phillip Taylor
http://www.amazon.com/Going-Full-Circle-Guillain-Syndrome/dp/1425125409/ref=sr_1_53?ie=UTF8&qid=1336515008&sr=8-53
Guillain Barre syndrome is an horrific and very frightening illness, basically this illness takes away all of your bodily functions, to the level where you cannot do anything for yourself (even breathe), and you truly believe you might die, unfortunately some do. The one characteristic of Guillain Barre syndrome is that it in no way affects the function of your brain, to be fully aware of what is going on around you yet be unable to move or even speak is mind-glowingly awful. It was because of the retention of all his mental faculties that the author was able to chronicle all the suffering in accurate detail. This level of lucidity and accuracy makes this book a compelling read for anyone, even those without the illness, as a "human interest" tale of the biggest battle this author ever had to face. Of course this book will be of use to fellow sufferers and their families, but it is aimed at the wider audience as well.

My Wake-up Call - A Survivor of Guillain-Barre Syndrome
by Jerry Jacobson
http://www.amazon.com/My-Wake-up-Call-Survivor-Guillain-Barre/dp/1936198703/ref=sr_1_58?ie=UTF8&qid=1336515008&sr=8-58
In November of 1998, Jerry found his blood pressure was abnormally high. One day later, with Dora Lou - his wife of almost 40 years - at his side, Jerry was diagnosed with the debilitating neurological illness, Guillain-Barre Syndrome (GBS). Within two weeks, Jerry was paralyzed, spending the next 276 days on a respirator. Several times the family was called together because Jerry was not expected to live through the night. The doctors explained that if Jerry did live, he would be a respirator-dependent quadriplegic the rest of his life. Trapped in his body, Jerry's mind continued to work, searching for answers. In a prayerful moment, Jerry felt a calm he had never felt before. He knew that, no matter what GBS sent to him, he would be able to bear it. With that in mind, when the doctors offered to ease his suffering by turning off the respirator, Jerry refused. This is Jerry's story of spending over 15 months in the hospital and making, over the following ten years, a ''miraculous'' recovery.

Guillain-Barré Syndrome: Everything You Need to Know About the Disorder including Signs and Symptoms, Causes, Management and more
by Gaby Alez
http://www.amazon.com/Guillain-Barr%C3%A9-Syndrome-Everything-including-Management/dp/127615142X/ref=sr_1_62?ie=UTF8&qid=1336515008&sr=8-62
Paperback: 188 pages; Publisher: Webster's Digital Services (February 28, 2012)

Masks
by Hatrick
http://www.amazon.com/Masks-Hatrick/dp/0531095142/ref=sr_1_89?ie=UTF8&qid=1336515493&sr=8-89
 Desperate to help his older brother Will who has become paralyzed by a rare disease, Pete uses tribal animal masks to communicate with Will, allowing him to escape his useless body and embark on a series of strange and powerful dream journeys. The two brothers in this novel are opposites. Will is athletic, cocky, and popular; Pete is shy, withdrawn, and intense. All of this changes when Will begins suffering from weakness and paralysis. He is diagnosed with having Guillain-Barre syndrome and becomes steadily worse, a prisoner in his own body. In desperation, Pete decides to resurrect a childhood game in which the boys used their father's collection of masks to become the animals represented. What Pete does not remember is that the game was forbidden when it became all too real and their parents found the boys locked in mortal combat as the Lion and Hyena...

You Can Cope with Peripheral Neuropathy: 365 Tips for Living a Full Life
by Mims Cushing & Norman Latov
http://www.amazon.com/You-Can-Cope-Peripheral-Neuropathy/dp/193260376X/ref=sr_1_101?ie=UTF8&qid=1336515600&sr=8-101
Peripheral neuropathy has reached epidemic proportions in recent years. This condition has numerous causes, but can be associated with diseases such as HIV, alcoholism, diabetes, and lupus and may result from medical treatments such as chemotherapy. Symptoms include pain, numbness, loss of balance, and tingling or burning in the extremities. Although widespread, neuropathy is not well understood, and finding reliable information about it can be difficult. Written by a leading doctor in the field and a patient-expert, You Can Cope with Peripheral Neuropathy: 365 Tips for Living a Full Life covers such diverse topics as what to ask at doctor appointments, how to make the house easier to navigate, where to find a support group, how to use vitamins and herbs for treatment, ways to travel safe, and more. The information in this practical book is aimed at both the millions of people afflicted with neuropathy and the families, caregivers, and health-care providers who share the trauma of this debilitating disease.

Bed Number Ten
by Mary Zimmeth Schomaker
http://www.amazon.com/Bed-Number-Ten-Sue-Baier/dp/0849342708/ref=sr_1_1?ie=UTF8&qid=1338323225&sr=8-1
A patient's personal view of long term care. Seen through the eyes of a patient totally paralyzed with Guillain-Barré syndrome, this moving book takes you through the psychological and physical pain of an eleven month hospital stay. BED NUMBER TEN reads like a compelling novel, but is entirely factual.

Solomon's Porch: The Story of Ben and Rose
by Jane Riley
http://www.amazon.com/Solomons-Porch-The-Story-Rose/dp/158851207X/ref=sr_1_1?s=books&ie=UTF8&qid=1338410460&sr=1-1
Guillain-Barre' syndrome is more than a disease: it is a disaster. SOLOMON'S PORCH, THE STORY OF BEN AND ROSE, is the intimate fictional account of one family's struggle with an ailment that left Ben Windham paralyzed and his relationships with people changed.

2012 Austin Mini Maker Faire Makers! 5/12



http://austinmakerfaire.com/makers/

Austin Mini Maker Faire
May 12, 2012 from 10am-6pm
Pine Street Station
East 5th Street & Waller, Austin, TX 78702


Maker Faire brings together families and individuals to celebrate the Do-It-Yourself (DIY) mindset and showcase all kinds of incredible projects.

At Maker Faire, you’ll find arts and crafts, science and engineering, food and music, fire and water but what makes this event special is that all these interesting projects and smart, creative people belong together.

They are actively and openly creating a maker culture.


Monday, May 7, 2012

A Few Famous People With GBS

A Few Famous People With GBS:


Andy Griffith, American actor on The Andy Griffith Show and Matlock, developed Guillain–BarrĂ© in 1983
Rachel Chagall, actress

Joseph Heller, author, contracted GBS in 1981. This episode in his life is recounted in the autobiographical No Laughing Matter, which contains alternating chapters by Heller and his good friend Speed Vogel.

Franklin D. Roosevelt, U.S. president. In 2003 doctors concluded that Roosevelt”s paralysis, long attributed to poliomyelitis, was actually Guillain-BarrĂ© syndrome.

Len Pasquarelli, sports writer and analyst for ESPN

Markus Babbel, German soccer player

Serge Payer, Canadian-born professional hockey player. After battling and overcoming the syndrome, he set up the Serge Payer Foundation, which is dedicated to raising money for research into new treatments and cures for Guillain–BarrĂ© syndrome.

Morten Wieghorst, Danish soccer player played for Celtic and Brondby

Lucky Oceans, Grammy Award winning musician

William “The Refrigerator” Perry, former professional American football player with the Chicago Bears was diagnosed with GBS in 2008.

Tony Benn, British politician.

Joseph Heller (May 1, 1923 – December 12, 1999) was an American satirical novelist, short story writer, and playwright. His best known work is Catch-22, a novel about US servicemen during World War II.

Ambrose ("Rowdy") Gaines IV (born February 17, 1959 in Winter Haven, Florida) is a former American swimmer, U.S. Olympic Hall of Fame member, Olympic three-time gold medalist, and member of the International Swimming Hall of Fame.

Samuel Goldstein, American athlete and Paralympian.[27]

Luci Baines Johnson, daughter of President Lyndon Johnson and Lady Bird Johnson. Diagnosed and under treatment for Guillain–BarrĂ© in April 2010.

Hugh McElhenny, Pro Football Hall of Fame inductee and former professional American football player with the San Francisco 49ers.

Norton Simon, American industrialist and philanthropist.

Hans Vonk, Dutch conductor.

Danny Wuerffel, 1996 Heisman Trophy winner from the University of Florida.

Friday, May 4, 2012

GBS / CIDP 12th International Symposium in Forth Worth, TX


SAVE THE DATE!

The GBS / CIDP 12th International Symposium is coming to Fort Worth, Texas!
October 26-28, 2012

Workshops! 'Ask the Experts'! State Night Dinner!
Walk-a-thon! Research Updates! So Much More!

Keep an eye out for more information at http://gbs-cidp.org/

Part of one of their chapters?
Look for a detailed brochure to be mailed late summer!

Aetherfest is on the Horizon!



Tickets? Check!
Hotel Room? Check!
Steampunky Outfits? Check! Check! Check!
Cash for Dealers' Room? Check!

See ya'll there!

https://www.facebook.com/aetherfest


Eyes to the skies and wishing safe travel for all those traveling to Aetherfest in San Antonio, TX this weekend!

Thursday, May 3, 2012

My most embarrassingly entertaining memory from my GBS ordeal

My most embarrassingly entertaining memory from my GBS ordeal

Some of this memory is jumbled so I might be combining several memories…

My mom and sister were in the room when I was at the hospital and we were practicing on trying to stand or at least moving around. Then I suddenly noticed something brown on the bed.

Oh god. My heart sank to the bottom of my stomach.
I just crapped myself. In front of my sister and mom.

I think there was a nurse in the room. Everything is very foggy for me to remember, I just remember feeling the embarrassment and shame creeping across my face and then the world was kind of swirly and I couldn’t keep track of where it was on the bed.

It wasn't just the embarassment of having gone on the bed, it was the fact i never even felt it!
Damn this stupid body, get back to working!!! My cheeks were probably red tomatoes.

Hehe, so there I am freaking out thinking I am sitting in my own crap and eventually my sis and the nurse calm me down I guess. I don't really remember anything else.

Evidently the feeding tube had come undone and dripped onto the bed.

I think I found that out pretty recently, like only a month or two ago; ya know, 3 years later I find out I didn’t really crap myself in front of my sister.

Heheh, so now people can start to tell what a prideful and vain person I am.

Hospitals really have no room for shame and pride. :)

My most fearful and panicked moment throughout my GBS ordeal

This is a warning for those who haven’t had GBS or might have a queasy stomach.
I am pretty frank about everything that went on during this and it involves vomit so read at your own risk. :)


My most fearful and panicked moment throughout my GBS ordeal

It wasn’t when I began losing strength, it wasn’t every day when I had to say goodnight to my husband at the end of visiting hours to be left alone in the hospital or rehab, and it wasn’t when the priest came strolling into my hospital room one night.

It was when I had been transferred back into ICU. They still needed to closely monitor my vital signs and breathing had become much harder but I was not on the respirator yet.

My hands could still move but not by much and I was pretty much locked inside my body, just waiting, always waiting, for everything to turn around. It was frustrating because even if I needed something my arms were too weak to move my hands to the little red panic button that sat near my right elbow.

By that time I had also had a hard time speaking beyond a whisper but I could still manage to swallow.

It was night time and at the end of the day, everything just seemed to burn.

A nurse strolled in and asked if I needed anything. I asked for something for the pain.

He walked out and came back with a pill called Darvocet.

He put it on my tongue and lifted a glass of water for me and I drank it down. He stood there for a moment and then told me to give a shout if I needed anything. He turned and walked out the door.

I sat there, waiting impatiently for the drug to set in when I felt my throat begin to tighten, felt my mouth begin to water and my cheeks begin to flush. I knew I was going to throw up.

I gave a struggled shout of ‘Help…”, I tried louder in a more panicked voice “Help…”

I could see nurses and doctors walking in the halls; my strained voice just not able to be heard above the general sounds in the hallway. I struggled to get my hands up to hit the little red button but nothing above my wrists would move.

Dammit, how could something right in front of me be so freaking hard to hit?! If I was going to die, like hell it was gonna be because I choked on my own vomit. It wouldn’t even be from the vomit necessarily, don’t people die from pneumonia? I could die from pneumonia because vomit gets in my lungs! I thought a thousand morbid thoughts.

More doctors and nurses passed; people, anyone that could help. I struggled to yell for help again and I felt it coming up my throat. Tears were streaming down my face, I couldn’t move my neck except to slightly roll it to the side, I struggled to make noise, anything to cause attention but all I could do was sit there, feeling the vomit fall across my neck and down my shoulders.

All I could really think was ‘Well crap… so I die alone in my own pile of vomit. Lovely…’ mixed with ‘I CAN’T BREATHE!!!’ An odd combination but I don’t think anyone really knows what to think when they panic.

A moment, what seemed like forever, later a doctor walking in the hall spotted me and came running in.

He lifted my head and my shoulders up and rolled me to the side some more and shouted for some help, the simple words I just couldn’t form.

The nurse rushed in and the doctor yelled “What happened?!” The startled nurse came up and helped lift me to the side, I could finally feel air hitting my lungs again, my breath was weak and I tried to gasp at the air. “I just gave her Darvocet and I stayed to watch to make sure she was ok… She was fine when I left, I was just in here.”

Eventually the heaving stopped.

Really body? You decide to deprive me of movement and you can still heave? Jerk.

Every shake and every shudder sent a wave of painful heat crawling over my skin.

Eventually I somewhat caught my breath.

And eventually I got cleaned up.

This is really just a moment that is burned into my brain and at the same time I can't help but laugh at myself for being so vain.

Sure, at that point I was really ready to give up on everything and just slip into the black, but die in a pile of my own vomit?

That is what panicked me?

LOL.

GBS Shirt Designs

You are also able to pick different background colors for the shirts so if you prefer different colors you can swap things up. If you have a shirt design in mind but don't have the means to create it, leave a comment and when I get a chance I can certainly try and put something together for you.
ALL DESIGNS COPYRIGHT TURNER'S TOKENS 2012.














You are also able to pick different background colors for the shirts so if you prefer different colors you can swap things up. If you have a shirt design in mind but don't have the means to create it, leave a comment and when I get a chance I can certainly try and put something together for you.
ALL DESIGNS COPYRIGHT TURNER'S TOKENS 2012.