A Piece of Me: Living with Autoimmune Disease and Then Some...

Segment on Dystonia to be Featured on OWN

2011-01-30T13:58:00.000-08:00

Dystonia to be featured on OWN, Feb. 2:http://www.i-newswire.com/dystonia-to-be-featured-on-mystery/86257

Woman Went Many Years With Undiagnosed Rheumatoid Arthritis

2011-01-23T07:39:00.000-08:00

View story about a woman who went undiagnosed with Rheumatoid Arthritis for many years at: http://www.aolhealth.com/condition-center/arthritis/rheumatoid-arthritis-diagnosis-after-pregnancy?icid=maing%7Cmain5%7Cdl3%7Csec1_lnk2%7C38278

Diet and Thyroid Cancer

2011-01-12T07:39:00.000-08:00

Interesting story about diet and thyroid cancer:http://www.mydaily.com/2011/01/11/low-iodine-diet-saved-my-life/?icid=maing%7Cmain5%7Cdl4%7Csec1_lnk3%7C35907

Talk Show Host Wendy Williams Has Grave's Disease

2010-11-23T13:11:00.000-08:00

Kudos to talk show host Wendy Williams for sharing that she has Grave's Disease. Williams appeared on The Doctors, yesterday.

Theraband Exercises for Cervical Dystonia

2010-11-21T10:17:00.000-08:00

Theraband Exercises for Cervical Dystonia:http://www.livestrong.com/article/311839-theraband-exercises-for-cervical-dystonia/

Great Tips from the Dystonia Medical Research Foundation

2010-11-10T08:54:00.000-08:00

Great tips from the Dystonia Medical Research Foundation:http://dmrfenews.blogspot.com/2010/11/dmrf-enews-november-2010.html

How to Be a Friend When Your Friend is Chronically Ill...

2010-11-03T05:59:00.001-07:00

I have written How to Be a Friend When Your Friend is Chronically Ill. View the article at:http://vonneb.wordpress.com/2010/11/03/how-to-be-a-friend-when-your-friend-is-chronically-ill/

DMFR Member Educates Continental Employees About Dystonia

2010-10-29T14:01:00.000-07:00

Education about Dystonia:http://www.dystonia-foundation.org/pages/dmrf_member_educates_continental_airlines_employees/506.php

Teen Who Has Dystonia Raises $300,000.00 For The Cause!

2010-10-27T12:14:00.000-07:00

View article about a teen who has raised money for Dystonia research:http://www.courier-journal.com/article/20101027/ZONE04/310270022

Vote, Vote, Vote

2010-10-23T09:46:00.000-07:00

Please get out and vote on Nov. 2. This is a very important election which could affect things like Healthcare Reform, etc. So, please let your voice be heard...

Movement Disorders: Cleveland Clinic Is Hosting An Online Chat

2010-10-22T08:23:00.000-07:00

Cleveland Clinic Online Health Chat for Movement Disorders on Friday, October 29, 2010. For more information, visit:http://www.clevelandclinic.org/health/chatreg/ChatPage.aspx?ChatId=1130

Michael J. Fox on Parkinson's and Life

2010-10-02T07:28:00.000-07:00

Michael J. Fox on Parkinson's and Life with CNN's Dr. Sanjay Gupta:http://pagingdrgupta.blogs.cnn.com/2010/09/29/michael-j-fox-on-parkisons-and-life/#comment-82766

Minneapolis Woman With Debilitating Movement Disorder To Compete In Twin Cities Marathon

2010-09-28T08:41:00.001-07:00

Women with Dystonia Competes in Twin Cities Marathon:http://www.i-newswire.com/minneapolis-woman-with-debilitating/62488

Jake's Ride

2010-09-27T16:20:00.000-07:00

A child (Jake) has DBS surgery to treat Dystonia...http://www.cbsnews.com/video/watch/?id=6901023n(Note: The intro advertisement is a bit choppy, but it smooths out nicely...be patient)

National Geographic: A Man Afflicted With Dystonia

2010-08-07T09:39:00.000-07:00

Correlation Between Dystonia and Parkinson's Disease

2010-08-07T09:14:00.000-07:00

The DMRF launches two new fundraising programs.

2010-08-03T09:28:00.001-07:00

The Dystonia Medical Research Foundation launches two new fundraising programs, Dogs4Dystonia and Dystance4Dystonia. For more details, view:http://dmrfenews.blogspot.com/2010/08/dmrf-enews-july-2010.html

"Dystonia Stealing Career From Young Photographer"

2010-08-03T09:20:00.000-07:00

See story, "Dystonia Stealing Career From Young Photographer" at:http://www.webcastr.com/videos/news/rare-disease-dystonia-stealing-career-from-young-photographer.html

The Today Show discusses 20 years of ADA (Americans With Disabilities Act)

2010-07-27T07:54:00.000-07:00

The Today Show discusses 20 years of ADA:http://today.msnbc.msn.com/id/26184891/vp/38411331#38411331

Dystonia Survey

2010-07-22T11:00:00.000-07:00

Share your experiences with Dystonia. The survey link can be found at:http://www.surveymonkey.com/s/LZSJTVF

Any insight into The ST Recovery Clinic?

2010-07-15T09:58:00.001-07:00

I believe that I have asked this question before. I'm not sure who is reading this blog (Hopefully, a few people...). But, my question is for anyone (with Cervical Dystonia) who has worked with The ST Recovery Clinic, under the guidance of Abby Brown. I know the program does not claim to offer a cure for the disorder. But, I was wondering if anyone can attest to the program having worked to

The Dystonia Coalition

2010-07-14T11:09:00.000-07:00

Information about The Dystonia Coalition:http://www.movementdisorders.org/monthly_edition/2010/04/dystonia_coalition.php

The American Dystonia Society

2010-07-13T05:46:00.001-07:00

The American Dystonia Society seems to be making a strong effort to educate people about Dystonia. Their efforts to raise funds for Dystonia research appear to be very impressive as well. View info about The American Dystonia Society at:http://www.dystoniasociety.org/

Dawn Brinkley to Promote Dystonia Awareness at Mrs. United States Pageant

2010-07-09T08:33:00.001-07:00

Dawn Brinkley to Promote Dystonia Awareness at Upcoming Mrs. United States Pageant:http://www.i-newswire.com/dawn-brinkley-to-promote-dystonia/47375

Facts About Dystonia

2010-07-02T15:40:00.000-07:00

The following is a fact sheet about Dystonia: http://www.aans.org/en/Patient%20Information/Conditions%20and%20Treatments/Dystonia.aspx

Article About a Young Woman Who Has Dystonia

2010-07-02T15:28:00.000-07:00

Through another blog that discusses living with Dystonia, I came across this interesting story about a young lady who has Dystonia:http://newstranscript.gmnews.com/news/2006-06-07/Front_Page/Family_brings_awareness_to_struggle_with_dystonia.html

A Beauty Queen Who Has Cervical Dystonia

2010-07-01T13:44:00.000-07:00

Mrs. Carolina is a patient advocate for those with Cervical Dystonia:http://mrsnorthcarolinaunitedstates.com/Meet_Mrs.htmlhttp://www.stdystonia.org/about/stories.cfm?id=61

National Geographic: Episode on Muscles discusses Dystonia as well as another disorder which affects muscles

2010-06-10T10:58:00.000-07:00

http://channel.nationalgeographic.com/episode/muscles-4923/Overview#tab-Videos/08202_00

Article: Integrated functional network could explain some mysteries of parkinsons and dystonia

2010-05-28T07:59:00.000-07:00

http://itisinteresting.me/2010/05/integrated-functional-network-could-explain-some-mysteries-of-parkinsons-and-dystonia/

Dystonia in the News: Dystonia on Good Morning America

2010-04-09T09:01:00.000-07:00

Today is World Autism Day

2010-04-01T12:05:00.000-07:00

Autism is one of those inexplicable neurological diseases--one day the afflicted child is fine and then it's like the lights go out on their personality, emotions, and overall functioning. This must be a devastating disorder to parents and families of children who have been stricken. My heart goes out to anyone and everyone who has been touched by Autism.For more information, visit: http://

Lupus Advocacy Day

2010-03-13T17:21:00.000-08:00

For information, visit the following blog:http://www.lupusgirlgoesraw.com/2010/03/lupus-advocacy-day.html

Article: Coping With Ups and Downs of Thyroid Disease

2010-03-12T12:58:00.000-08:00

http://www.dailynews.com/health/ci_14648718

Boy lost his mom due to lack of healthcare

2010-03-12T09:05:00.000-08:00

http://

National Autoimmune Diseases Awareness Month

2010-03-09T06:31:00.000-08:00

Senate Resolution 372 designates March "National Autoimmune Diseases Awareness Month." Hopefully this designation will bring much needed attention and awareness to these debilitating diseases.For more information, read the following: http://www.medicalnewstoday.com/articles/181565.php

Story of a Young Man Who Has Dystonia

2010-02-23T07:07:00.000-08:00

The following is an article that was published in the Mat-Su Valley Frontiersman about a young man who has Generalized Dystonia. View the article at:http://www.frontiersman.com/articles/2010/02/22/valley_life/doc4b835a80199bb678637711.txt

Documentary: My Father, My Brother, and Me

2010-02-10T16:31:00.000-08:00

In the latest edition of Neurology Now, there is an article featuring PBS Frontline's Dave Iverson. He discusses his struggle with Parkinson's Disease. He also discusses his documentary, My Father, My Brother, and Me. This documentary appeared on PBS last week. However I was able to watch the entire documentary at http://www.pbs.org/wgbh/pages/frontline/video/flv/generic.html?s=frol02p6c7&

Stories of Others: "Walking My Path With Parkinson's"

2010-02-10T15:23:00.001-08:00

I came across an interesting blog by a woman who has Parkinson's Disease. Her blog is called Walking My Path With Parkinson's. http://marian-pathwalk.blogspot.com/2010/02/what-does-parkinsons-feel-likerevisited.html

The Dystonia Medical Research Foundation (DMRF) Updates

2010-02-10T15:14:00.000-08:00

Updates from The Medical Research Foundation at:http://dmrfenews.blogspot.com/2010/02/dmrf-enews-november-2009.html

Power of the Mind

2010-02-07T18:58:00.000-08:00

Some words of wisdom from The Dalai Lama:http://www.healyourlife.com/author-his-holiness-the-dalai-lama/2010/02/wisdom/inspiration/the-power-of-the-mind&utm_id=HYLFB

Mother's Fight to Help Her Son Who Has Dystonia

2010-02-05T08:26:00.000-08:00

View story about a mother who fought to help her son who has Dystonia at:http://www.wkyc.com/news/health/health_article.aspx?storyid=130193&catid=7

Dystonia Study: UAB to partner with Harvard Medical and Mt. Sinai on 5-year study

2010-01-31T11:14:00.000-08:00

http://www.myfoxal.com/Global/story.asp?S=11902696

Let 'em Have it Janie!!!

2010-01-29T17:26:00.000-08:00

Janie B., founder of Stop the Thyroid Madness, had a confrontation with a former Pharmaceutical Rep of Abbott Labs regarding Synthroid. Way to go Janie!Read about it at :http://www.stopthethyroidmadness.com/2010/01/24/guess-who-started-a-conversation-with-me/

What's Really in Our Food?

2010-01-29T10:14:00.001-08:00

On a recent episode of The Oprah Winfrey Show, Oprah discussed the importance of eating "real food" with author Michael Pollan.On the show, Pollan discussed how we are being harmed by the foods that are being sold in typical grocery stores. He also shed light on many horrifying practices that are taking place within the food industry. For example, animals are being given tons of antibiotics in

Update from the organization Care4dystonia

2010-01-23T13:09:00.000-08:00

http://care4dystonia.org/

Blog repost from Livable Low Carb: Flour People Getting Twitchy

2010-01-22T10:11:00.000-08:00

The following is a link to a blog post written by Dr. A at Livable Low Carb. Basically the article/blog is stating that just because the doctor TELLS you that you don't have Celiac Disease, it doesn't necessarily mean that you don't have a sensitivity or intolerance to foods that contain gluten. Regardless of the doctor's assessment, you know your body best. If after ingesting gluten, for example

The Second Beat Dystonia Advocacy Call Scheduled for Sunday, February 7, 2010

2010-01-14T10:08:00.000-08:00

For more information, visit:http://www.lifewithdystonia.com/2010/01/hello-tribe-another-call-scheduled.html

January is Thyroid Awareness Month

2010-01-12T12:49:00.000-08:00

January is Thyroid Awareness Month. Visit the following link for more information about Thyroid Disease/Disorders:http://www.thyroidawarenessmonth.com/

Thyroid Patient Community Call on Thursday, January 14, 2010

2010-01-12T09:04:00.001-08:00

The following was taken directly from http://www.stopthethyroidmadness.com/2010/01/11/dr-lowe-wants-to-talk-to-you/ :On the heels of an informative and wonderful THYROID PATIENT COMMUNITY CALL on Talkshoe last week with Dr. John C. Lowe (see posts below), we’re going to do it again this coming Thursday, January 14th. Join us for Part 2!Dr. Lowe is a fibromyalgia, thyroid, and metabolism

Thyroid Disorders: why don't T4 only meds work for everyone?

2010-01-12T08:57:00.000-08:00

I happened to stumble upon http://www.iwantmyt3.com/t3-test-questions.htm. On this site, Dr. Bouc discusses Thyroid disorders and why T4 only meds (i.e. Synthroid and Levoxyl) are not effective for everyone.As a visual learner, I like that he uses repetition and drawings to relay the info. His diagram helped to further explain and help me to understand the reasons why T4 meds are not always

Article: Ups and Downs of Thyroid Disease

2010-01-11T18:25:00.000-08:00

View the article, Ups and Downs of Thyroid Disease at:http://www.mercurynews.com/bay-area-living/ci_14150353

Unfair Treatment of Thyroid Patients; We Need Help!

2010-01-10T07:57:00.001-08:00

I will be consistently reblogging this post, because it is important that feedback is received by as many resources as possible... (Excuse the paragraph breaks;copy and paste aren't working so well for me)Unfair Treatment of Thyroid Patients; We Need Help!Out of frustration and concern:I am trying to figure out how to help in exposing the unfair practices that are taking place in the treatment of

My most current Tweets on Twitter

2010-01-10T07:52:00.000-08:00

Simple Reflection: http://wp.me/pGoUb-3b 27 minutes agoWorry, Frustration, and Gratitude: http://wp.me/pGoUb-31 about 18 hours agoUnfair treatment of Thyroid Patients; We Need Help! Tell me what you think at http://chyvonneb.blogspot.com/ 1 day agoA youngster with Grave's Disease: http://wp.me/pGoUb-2U 2 days agoAppointment with the cardiologist: http://wp.me/pGoUb-2R 2 days ago

Unfair Treatment of Thyroid Patients; We Need Help!

2010-01-09T05:07:00.001-08:00

Out of frustration and concern:I am trying to figure out how to help in exposing the unfair practices that are taking place in the treatment of patients who suffer from Thyroid disorders in hopes that these inadequate medical practices will change at some point. Common complaints of patients who are receiving Thyroid Replacement Hormone due to a thyroid disorder are: not being adequately

Tips from Prevention Magazine: seven foods that shouldn't be eaten

2010-01-09T03:50:00.000-08:00

http://www.aolhealth.com/healthy-living/longevity/foods-not-to-eat?icid=mainsearch4dl4link1http%3A%2F%2Fwww.aolhealth.com%2Fhealthy-living%2Flongevity%2Ffoods-not-to-eat

Stop The Thyroid Madness Live Chat Session

2010-01-07T20:12:00.000-08:00

I am lovin' technology. If there was ever a time to be sick (bad joke, I know)...Let's just say I feel blessed to be living during the internet era. The internet has truly been beneficial in allowing me to connect with people who are in a similar boat.Anyway, I was just on a phone/chat session--it lasted at least an hour and a half-- with Janie of Stop the Thyroid Madness and many other callers/

Winterizing the Thyroid

2010-01-07T09:54:00.001-08:00

Mary Shomon's tips for "Winterizing the Thyroid":http://thyroid.about.com/od/relatedconditions1/a/winterize.htm

Bauchmann-Strauss Dystonia Center of Excellence

2010-01-06T10:13:00.000-08:00

New York City's Beth Israel Medical Center is the site of the nation's first ever Bachmann-Strauss Dystonia Center of Excellence:http://www.dystonia-parkinson.org/index.cfm?fuseaction=home.viewPage&page_ID=5B99D3C4-7E90-9BD4-C155BF235DA7D7A3

An Autoimmune Disorder: Rheumatoid Arthritis

2010-01-05T19:37:00.000-08:00

View a woman's story of living with Rheumatoid Arthritis:http://www.aolhealth.com/condition-center/arthritis/rheumatoid-arthritis-erica-vorhauer?icid=mainsearch4dl3link3http%3A%2F%2Fwww.aolhealth.com%2Fcondition-center%2Farthritis%2Frheumatoid-arthritis-erica-vorhauer

Resources for Neurological Movement Disorders

2010-01-05T19:24:00.000-08:00

Resources for people who have Neurological Movement Disorders:http://www.spiritedmovement.org/images/1_min_guide_to_movement_disorders.pdf(from: The Spirited Movement Foundation)

Putting a Face on Dystonia

2010-01-05T18:16:00.000-08:00

Putting a face on Dystonia...Rogers Hartmann at TEDxSMU.http://www.pegasusnews.com/news/2009/dec/17/tedxsmu-talk-rogers-hartmann/

The Beat Dystonia Advocacy Call-in

2010-01-03T14:42:00.000-08:00

A big thanks to Rogers Hartmann and Renee Leverrier for hosting The Beat Dystonia Advocacy call-in session! It was very nice to talk with fellow Dystonians. I will discuss some of what we talked about in a later post.

Dystonia Conference Session

2010-01-01T07:31:00.000-08:00

Dystonia advocate Rogers Hartmann has posted information about a call-in conference, hosted by Beat Dystonia, which will take place on January 3, 2009. For more information, please visit:http://www.lifewithdystonia.com/2009/12/advocacy-conference-call.html.

2009-12-31T17:42:00.001-08:00

The Top 10 Thyroid Stories of the Decade

2009-12-30T13:07:00.000-08:00

We're on the brink of another New Year. It's customary to see lists discussing the top (???) of the decade--the top grossing movies, the top musicians, the best songs, etc.Well, Mary Shomon, author and thyroid disease activist, has written an article, The Top Ten Stories Affecting Thyroid Patients in the Decade from 2000-2009. View the article at:http://thyroid.about.com/od/

The Golden Girls: The Sick and Tired Episode

2009-12-26T09:05:00.001-08:00

Last night, I watched an episode of The Golden Girls--one of my all time favorite shows; I've probably seen every episode. Unfortunately, I can certainly relate to the "Sick and Tired" episode: The episode in which Dorothy is ill(she has Chronic Fatigue Syndrome), but doctors keep dismissing her concerns. After finally being diagnosed with CFS, she had the opportunity to confront one of her

Happy Holidays

2009-12-24T12:21:00.000-08:00

I wish everyone a Merry Christmas and a Fabulous New Year!!!

Could Brittany Murphy Have Been Suffering From Grave's Disease?

2009-12-22T14:52:00.000-08:00

When I heard about the passing of actress Brittany Murphy, I hoped her death wasn't due to a drug overdose or from taking a mixture of prescription drugs--as we've been seeing by the untimely deaths of numerous entertainers.Then, when I saw recent pictures and footage of her on T.V., I immediately thought that she must have been anorexic. She was grossly thin. Then, I heard that she had a heart

Problems With The Standard American Diet

2009-12-19T08:34:00.001-08:00

Interesting post on The Standard American Diet:Source: http://leclinic.blogspot.com/2009/12/sad-diet.html

"Welcome to The Town of Allopath"

2009-12-18T06:13:00.000-08:00

This is funny and so true... View a little cartoon that parodies the frequent ineffectiveness of Allopathic Medicine (conventional medicine).http://www.youtube.com/watch?v=vIhNyX3pRrk(Welcome to the Town of Allopath: Copyright Mercola.com 2009Original Story by Mike Adams --http://www.naturalnews.com/)

Grave's Disease Resources

2009-12-15T06:22:00.000-08:00

The following are resources that give information about Grave's Disease. Remember: Grave's Disease doesn't only cause hyperthyroidism. Yes, Grave's Disease is an Autoimmune Disorder that often affects the thyroid. But, GD has the potential to affect various bodily functions regardless of the overactive thyroid being treated with medication or radioactive iodine.Even though I've been on this GD

There is Still a Shortage of Natural Thyroid Hormone; Where Can You Find Natural Thyroid Hormone?

2009-12-12T05:45:00.000-08:00

There continues to be a shortage of Natural Thyroid Hormone. For those who can't tolerate Synthetic Thyroid Hormone, the Save Natural Thryoid Coalition has compiled a list of places where you can get NTH. For more information please click on:http://spreadsheets.google.com/viewform?formkey=dDQ4WkJwZkZMRXNUU1NaZ1poalR5TFE6MA

Article: Doctors Who Don't Listen to What Part About This Medication Doesn't Work for Me Do You Not Understand?

2009-12-07T10:15:00.000-08:00

The following is a good article posted by Mary Shomon (Save Natural Thyroid Hormone). I can totally relate to the letter in that it discusses a patient informing a doctor that they will not take Synthetic Thyroid Hormone. Many health care professionals just don't get that some of us just don't do well on Synthetic Thyroid Hormone. There is a difference. I just wish I had known that sooner.http://

The Today Show: New Hope in Battle Against Cerebral Palsy

2009-12-03T09:05:00.001-08:00

My mother brought to my attention that Dr. Nancy Snyderman was on The Today Show discussing the strides that have been made in the therapy and treatment of those afflicted with Cerebral Palsy. Cerebral Palsy is a neurological disorder that appears in infancy or early childhood; it affects movement and muscle coordination.Dr. Snyderman mentioned how robotics are being used in working with people

Article: How to Protect Your Health in the Computer Era

2009-12-03T05:51:00.001-08:00

The following article, How to Protect Your Health in the Computer Era, was written by Dr. Ben Kim, a chiropractor and acupuncturist. It offers excellent tips including how to protect your lower back, hands and wrists, and the neck from the potentially damaging effects of computer usage. The "neck" section may be especially helpful for my blogging buddies who suffer from Cervical Dystonia.http://

Books About Dystonia

2009-12-01T10:23:00.000-08:00

I saw some books (about Dystonia) that looked interesting on Amazon.com. One of the books came out today. I have not ready any of them, yet. Yoga for Movement Disorders: Rebuilding Strength, Balance and Flexibility for Parkinson's Disease and Dystonia (Spiral-bound)~ Renee Le Verrier (Author)http://www.amazon.com/Yoga-Movement-Disorders-Rebuilding-Flexibility/dp/187341353X/ref=sr_1_2?ie=UTF8&s=

Twitter Updates

2009-11-30T10:09:00.000-08:00

Could problems be linked to Thyroid Disorder? http://www.stopthethyroidmadness.com/2009/11/29/jane-pauley-hives-depression-bipolar/ about a minute agoDid You Have Your Superfood Today?http://bit.ly/4v1AFG 55 minutes agoPhysiotherapy for Autoimmune Diseaseshttp://www.9dom.com/the-types-of-neurological-conditions-and-physiotherapy-used/ about an hour agoPatient Registry for (Dystonia) Gene Testing

Recent Twitter Updates

2009-11-29T08:42:00.000-08:00

Dystonia Treated with Surgically Implanted Pacemakerhttp://www.youtube.com/watch?v=wVVrN4tnxVU 5 minutes agoReflection--In the Face of Illness: Keeping My Mind From Going There http://vonneb.wordpress.com/2009/11/29/140/ 16 minutes agoMisinformation About Natural Thyroid Hormonehttp://thyroid.about.com/b/2009/11/27/american-thyroid-association-misinformation-natural-thyroid.htm about 22 hours ago

Happy Thanksgiving

2009-11-26T09:02:00.000-08:00

Have a Wonderful Thanksgiving!!!

Rogers Hartmann discusses Dystonia

2009-11-25T15:46:00.000-08:00

Activist Rogers Hartmann discusses her life with Dystonia and her efforts to raise funds to help in finding a cure for Dystonia at:http://www.frtv.org/2009/11/tedx-rogers-hartmann-frenemies-dystonia/

The Story of a Man Who Had Sarcoidosis

2009-11-23T15:16:00.001-08:00

Below, there is a link to a story about a man named David McClendon, a former newspaper editor. McClendon lived 15 years with Sarcoidosis, an autoimmune disease. With Sarcoidosis, "the body's defenses attack vital organs, including lungs, kidneys, heart, etc. The attacks cause scarring and the scar tissue clump together." Unfortunately, Mr. McClendon recently lost his battle with the disease.I

I took a look at Clinicaltrials.gov.

2009-11-22T08:34:00.000-08:00

After reading a Tweet that discussed clinical trials, I decided to, once again, visit http://clinicaltrials.gov/. On this site, you can find various clinical health trials that are being done.So, I typed in Dystonia and Cervical Dystonia. There were quite a few listed trials. But, due to my internal sensitivities (i.e. sensitivities to meds, autoimmune issues, etc.), I'm not willing to

In the News: New Breast Cancer Recommendations

2009-11-20T08:13:00.000-08:00

This is what I have to say about the U.S. Preventative Services Task Force recommendations for breast cancer (other than they suck--LOL):This week, there have been several recommendations in terms of Women’s Health. For starters, The U.S. Preventative Services Task Force—an independent panel of doctors and researchers—has issued recommendations as to when women should receive mammographies.Prior

Good News: Unprecedented Monies to Support Dystonia Research

2009-11-19T08:27:00.001-08:00

The Dystonia Coalition has obtained an ORD Grant to support Dystonia Research. View the following article:http://www.dystonia-foundation.org/pages/dystonia_coalition_obtains_ord_grant/362.php

Botox Injection Day

2009-11-17T11:41:00.001-08:00

Today, I had a Botox injection appointment (Not for wrinkles--LOL; for the Cervical Dystonia). My last set of injections were done about three months ago. My neurologist injected me six times in various locations of my neck. Of course, I cried. Thankfully, my mother was there to hold my hand. I hope the spasms (especially on the right side of my neck) will get considerably better with this

My Latest Tweets and Retweets

2009-11-15T10:59:00.001-08:00

Check out my latest twitter updates. They include the following articles:The Other Pain Of Autoimmune Disease RT@ http://bit.ly/dNdwZ(Discusses the emotional pain of dealing with disease)Calling for a War on DiabetesRT @http://ow.ly/ClmMFood Poisoning May Hurt For Life @ http://bit.ly/4f54WkMy reflection on Living With Pain @ http://vonneb.wordpress.com/2009/Lupus explained: http://bit.ly/1Rr85R

Can I Get An Autoimmune Specialist?

2009-11-12T15:54:00.000-08:00

Wouldn't it be nice if everyone with an Autoimmune Disorder received their primary care from an Autoimmune Disorder Specialist?I was listening to a radio show in which there was a doctor who was discussing Lupus. From listener comments and from my prior interactions with others who have an Autoimmune Disease, a common thread seems to be faulty care from doctors who treat these

Advocate Speaks About Girl Who Claimed She Got Dystonia From the Flu Shot

2009-11-10T10:48:00.000-08:00

Interesting commentary from Rogers Hartmann, an advocate in the fight for research into treating and curing Dystonia. She discusses the girl who claimed she was afflicted with Dystonia after receiving the Flu shot. View Hartmann's message at:http://www.lifewithdystonia.com/2009/11/defining-dystonia-and-why-it-is-so.html

Response to Christy's Comment

2009-11-09T10:55:00.001-08:00

Christy,Thanks for the response about taking beta blockers. I appreciate your advice!I believe that the Flexeril I'd been taking recently helped to increase my heart rate and possibly the anxiousness of being prepped for surgery had a role in the increased heart rate as well.I also feel that my heart rate has gradually gotten better (although, obviously not perfect) since being off of Synthroid (

Is it Dystonia or a Hoax?

2009-11-05T07:41:00.001-08:00

Is the story about Desiree Jennings, the cheerleader who got Dystonia from the Flu Vaccination a hoax? There are stories circulating that this young woman does not actually have Dystonia.Dystonia is a neurological disorder that causes muscles to contract involuntarily. Often, doctors are not able to pinpoint the exact cause of the disorder. This is true in the case of many neurological disorders

Drug Induced Drowsiness: The Effects of Taking Flexeril

2009-11-01T09:11:00.000-08:00

I started taking Flexeril, a strong muscle relaxant prescribed for the severe muscle spasms in my neck. The reason I don't like medicine is because I seem to be a magnet for side effects. I prayed that Flexeril would be different. But, there went that magnet again...My heart flutters even more and the medicine makes me extremely drowsy.When I take it (one pill), I feel literally drugged for quite

I Received Help in Spreading the Word About Dystonia

2009-10-26T09:04:00.000-07:00

"On this day, at least one more person knows about this rare disorder called Dystonia. And for that, I am thankful." Yesterday, I commented on a young woman's (her name is Nieya) blog in which she mentioned the story about the woman who had developed Dystonia after receiving the Flu shot.Nieya commented that when she first saw the video footage of the young woman moving strangely, her instinct

Woman Develops Dystonia After Receiving the Flu Shot

2009-10-22T15:34:00.001-07:00

Is it possible to get Dystonia after receiving the Flu shot? Anything is possible. In regards to the young woman who developed Dystonia throughout her body after receiving the flu shot, my thoughts and prayers go out to her and her family. She is obviously in a great deal of discomfort as Dystonia is a painful disorder that causes the muscles to spasm uncontrollably. On one news show that I

No Surgery For Me

2009-10-22T13:27:00.001-07:00

I was due to have surgery on Friday. I went to the hospital yesterday (Wednesday) for my preadmission physical before undergoing surgery for a rectal mass. The doctors don't seem too concerned about it, but I was advised to get it out before it could potentially turn into something. The point of the preadmission physical was mainly to determine how I might react to the anesthesia during

2009-10-20T08:33:00.001-07:00

Chronic Illness and Finding Support

2009-10-20T08:22:00.000-07:00

While I have joined an online support group for Dystonia, every story and daily struggle is so different. Doctors have told me that Dystonia is incurable. Items that I read tell me that Dystonia is incurable. But, I pray for healing anyway!!! As, He has the final say--rather it is yay or nay.Anyway, I am now on a muscle relaxant for the Dystonia. I know these meds have side effects, and I will

Communication and Chronic Illness

2009-10-20T07:14:00.000-07:00

When faced with illness, it is very important to communicate with others who are going through a similar issue. As I have been afflicted with a few unusual illnesses/disorders, I have found that talking with others in the same or a similar boat can be helpful.If you can't find someone to talk with through a local support group, there are online websites that deal solely with specific illnesses.

I Had the Colonoscopy...

2009-09-26T03:56:00.000-07:00

Due to my history of intestinal infections and other health issues, my Gastroenterologist decided to further investigate the condition of my intestines.In July, I had a procedure done called an Upper GI Endoscopy. The purpose of this procedure is to investigate the upper portion of the intestines (the esophagus, stomach, and duodenum).Prior to the procedure, I was sedated into a "twilight" sleep.

A Piece of Me: Living with Autoimmune Disease and Then Some...

Segment on Dystonia to be Featured on OWN

Woman Went Many Years With Undiagnosed Rheumatoid Arthritis

Diet and Thyroid Cancer

Talk Show Host Wendy Williams Has Grave's Disease

Theraband Exercises for Cervical Dystonia

Great Tips from the Dystonia Medical Research Foundation

How to Be a Friend When Your Friend is Chronically Ill...

DMFR Member Educates Continental Employees About Dystonia

Teen Who Has Dystonia Raises $300,000.00 For The Cause!

Vote, Vote, Vote

Movement Disorders: Cleveland Clinic Is Hosting An Online Chat

Michael J. Fox on Parkinson's and Life

Minneapolis Woman With Debilitating Movement Disorder To Compete In Twin Cities Marathon

Jake's Ride

National Geographic: A Man Afflicted With Dystonia

Correlation Between Dystonia and Parkinson's Disease

The DMRF launches two new fundraising programs.

"Dystonia Stealing Career From Young Photographer"

The Today Show discusses 20 years of ADA (Americans With Disabilities Act)

Dystonia Survey

Any insight into The ST Recovery Clinic?

The Dystonia Coalition

The American Dystonia Society

Dawn Brinkley to Promote Dystonia Awareness at Mrs. United States Pageant

Facts About Dystonia

Article About a Young Woman Who Has Dystonia

A Beauty Queen Who Has Cervical Dystonia

National Geographic: Episode on Muscles discusses Dystonia as well as another disorder which affects muscles

Article: Integrated functional network could explain some mysteries of parkinsons and dystonia

Dystonia in the News: Dystonia on Good Morning America

Today is World Autism Day

Lupus Advocacy Day

Article: Coping With Ups and Downs of Thyroid Disease

Boy lost his mom due to lack of healthcare

National Autoimmune Diseases Awareness Month

Story of a Young Man Who Has Dystonia

Documentary: My Father, My Brother, and Me

Stories of Others: "Walking My Path With Parkinson's"

The Dystonia Medical Research Foundation (DMRF) Updates

Power of the Mind

Mother's Fight to Help Her Son Who Has Dystonia

Dystonia Study: UAB to partner with Harvard Medical and Mt. Sinai on 5-year study

Let 'em Have it Janie!!!

What's Really in Our Food?

Update from the organization Care4dystonia

Blog repost from Livable Low Carb: Flour People Getting Twitchy

The Second Beat Dystonia Advocacy Call Scheduled for Sunday, February 7, 2010

January is Thyroid Awareness Month

Thyroid Patient Community Call on Thursday, January 14, 2010

Thyroid Disorders: why don't T4 only meds work for everyone?

Article: Ups and Downs of Thyroid Disease

Unfair Treatment of Thyroid Patients; We Need Help!

My most current Tweets on Twitter

Unfair Treatment of Thyroid Patients; We Need Help!

Tips from Prevention Magazine: seven foods that shouldn't be eaten

Stop The Thyroid Madness Live Chat Session

Winterizing the Thyroid

Bauchmann-Strauss Dystonia Center of Excellence

An Autoimmune Disorder: Rheumatoid Arthritis

Resources for Neurological Movement Disorders

Putting a Face on Dystonia

The Beat Dystonia Advocacy Call-in

Dystonia Conference Session

The Top 10 Thyroid Stories of the Decade

Suggested Article: "The Agonies of Being Thyroidless"

The Golden Girls: The Sick and Tired Episode

Happy Holidays

Could Brittany Murphy Have Been Suffering From Grave's Disease?

Problems With The Standard American Diet

"Welcome to The Town of Allopath"

Grave's Disease Resources

There is Still a Shortage of Natural Thyroid Hormone; Where Can You Find Natural Thyroid Hormone?

Article: Doctors Who Don't Listen to What Part About This Medication Doesn't Work for Me Do You Not Understand?

The Today Show: New Hope in Battle Against Cerebral Palsy

Article: How to Protect Your Health in the Computer Era

Books About Dystonia

Twitter Updates

Recent Twitter Updates

Happy Thanksgiving