Thursday, December 31, 2009

Wednesday, December 30, 2009

The Top 10 Thyroid Stories of the Decade


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/thyroidbasicsthyroid101/ss/top-thyroid-stories-2000-2009.htm.
It's pretty interesting.

Suggested Article: "The Agonies of Being Thyroidless"


For anyone contemplating RAI due to Grave's Disease or another condition that has affected the thyroid, please check out the following site at:
http://www.stopthethyroidmadness.com/blog/.

I have had RAI as treatment for Grave's Disease. Since then, there is a little more information out there about this procedure--thanks to patients and advocates who have gone through it and know the associated problems that can occur as a result of destroying the thyroid. Unfortunately, many doctors are quick to suggest RAI because it is a "quick" and "convenient" method of TREATING the disease. However, destroying the thyroid does not cure the underlying disease.

I, like many others, have had major issues as a result of destroying my thyroid function through RAI. Unfortunately, I followed my doctor's advice. So, as I said, I suggest doing the research and heavily weighing your options (i.e. natural therapies to get your conditon under control).

Please know, Grave's Disease must be resolved or you risk other issues such as heart problems and osteoporosis to name a few; doing nothing is not an option. In the end, a more drastic approach such as RAI may be necessary. But, I suggest trying other options first.

My mother has a friend who has a 14 year-old-son with Grave's Disease. Unfortunately, the young man is about to undergo RAI, because antithyroid meds have been ineffective at putting him into remission. Of course, his doctors tell him that most people do well after RAI. Well, this doctor hasn't talked to me or others who haven't done so well. I hope and pray this young man does well. It just breaks my heart that this is his only option.

Hopefully, the future will bring better options for treating conditions that affect the Thyroid!

Saturday, December 26, 2009

The Golden Girls: The Sick and Tired Episode

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 dismissive doctors. Every doctor should see this episode.





Thursday, December 24, 2009

Happy Holidays

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

Tuesday, December 22, 2009

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

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 ailment.
I also read that Murphy had been reported as saying that certain medications increased her heart rate (this can be dangerous). After hearing all of this, I began to wonder if she could have been suffering from Grave's Disease, an autoimmune disease that can affect the Thyroid.

As a person who has GD, I have been suspected on numerous occasions (by doctors, etc.) of being anorexic. You should've seen me when I was first diagnosed with GD; I seriously looked like a concentration camp victim. As, this disease speeds up the metabolism and causes weight issues regardless of how much is eaten. Even after treatment, I have many issues including the inability to gain weight, intolerance to certain foods and medications, rapid heart rate, etc.

Regardless of what caused Murphy's death, it is so sad and unfortunate that she has passed away at such an early age. My thoughts and prayers are with her family.

_______________________________________________
Below is an article regarding the possibility of Murphy having had a thyroid condition. It looks like I'm not the only one who suspects that this could be a possibility:

http://thyroid.about.com/b/2009/12/22/brittany-murphy-thyroid.htm

Saturday, December 19, 2009

Friday, December 18, 2009

"Welcome to The Town of Allopath"


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

Tuesday, December 15, 2009

Grave's Disease Resources

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 roller coaster for at least 10 years, I only started looking into the effects of diet and other factors (i.e. medications, intestinal issues, food intolerances, etc.) when I started developing more illnesses (i.e. Osteopenia, high cholesterol, and Cervical Dystonia--to name a few). Currently, I am reading a book about inflammation (an underlying issue with most illnesses).

Today, I did a few searches: "salt and Grave's Disease" and "foods to avoid with Grave's Disease." I have posted some interesting links below.

http://graves.medshelf.org/Self_Help

http://www.ngdf.org/living_with_gd.php

http://www.gravesdiseasecure.com/gravesdiseasediet.html

http://www.dailystrength.org/c/Graves_Disease/forum/4585748-foods-high-iodine

http://www.thyca.org/Cookbook.pdf

http://www.medicinenet.com/script/main/art.asp?articlekey=53855&page=4

http://eyesee.typepad.com/hyperthyroid_graves_eye/foods-graves-disease/page/2/

Saturday, December 12, 2009

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


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

Monday, December 7, 2009

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

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://www.hospitalsoup.com/health-conditions/thyroid/doctors-who-dont-listen-what-part-about-this-medication-doesnt-work-for-me-do-you-not-understand

Thursday, December 3, 2009

The Today Show: New Hope in Battle Against Cerebral Palsy

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 who have Cerebral Palsy. She also mentioned that under the Obama administration, extraordinary advances are being made in terms of stem cell research. How hopeful and exciting!

Visit msnbc.com for breaking news, world news, and news about the economy

Article: How to Protect Your Health in the Computer Era


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://drbenkim.com/protect-health-computer-era.html

Tuesday, December 1, 2009

Books About Dystonia

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=books&qid=1259692036&sr=8-2-catcorr



The Dystonia Patient: A Guide to Practical Management (Paperback)~ Michael S. Okun (Author, Editor)
http://www.amazon.com/Dystonia-Patient-Guide-Practical-Management/dp/1933864621/ref=sr_1_3?ie=UTF8&s=books&qid=1259692133&sr=1-3




Living Well with Dystonia: A Patient Guide (Paperback)~ M.D. Daniel Troung (Author), M.D. Mayank Pathak (Author), M.D. Karen Frei (Author)

http://www.amazon.com/Living-Well-Dystonia-Patient-Guide/dp/1932603239/ref=sr_1_8?ie=UTF8&s=books&qid=1259692133&sr=1-8

Sunday, November 29, 2009

Thursday, November 26, 2009

Happy Thanksgiving


Have a Wonderful Thanksgiving!!!

Wednesday, November 25, 2009

Rogers Hartmann discusses Dystonia

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/

Monday, November 23, 2009

The Story of a Man Who Had Sarcoidosis

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 have never met McClendon. I have never heard of McClendon. But, this story "came to me," and I felt the need and desire to share it. Within the article about McClendon, there is a link to McClendon's blog in which I was able to get an idea about what it's like for people who live with Sarcoidosis. In reading through the blog, I was able to get an idea about his personality and his sense of humor.

As I read parts of McClendon's blog, I was saddened knowing that he is no longer on this earth--may he rest in peace. However, I am glad that he left behind a piece of himself which will hopefully educate others about living and struggling with Sarcoidosis.

Article that discusses David McClendon:
http://www.nhregister.com/articles/2009/11/20/news/b1-beachclmndavid.txt

David McClendon's blog:
http://15yearsofmysarcoidlife.blogspot.com/

Sunday, November 22, 2009

I took a look at Clinicaltrials.gov.

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 participate in trials that involve receiving medications or trials that involve invasive procedures (naturally, most of the trials involved chemically invasive procedures).

However, I did find one, potential trial that discusses the usage of Botox to treat Cervical Dystonia. It doesn't appear that this trial requires anything besides observing my response to Botox injections. So, I emailed the group that is overseeing this study to ask some general questions. We'll see what I get back.

I also put in searches such as "Grave's Disease and Dystonia." The search gave me nothing. Online, I have come across quite a few people who have this combination--just as I do. So, this would make for an interesting investigation.

I would love to be part of a research study or investigation that would simply investigate my medical history in conjunction with the history of others who have incurable, hard-to-treat diorders/illnesses.

Studies that I would personally like to participate/offer information to would be studies involving: Cervical Dystonia, Grave's Disease, The effects of Synthroid in treating Hypothyroidism, The effects of Natural Thyroid Hormone in treating Hypothyroidism, Metabolism in relation to Grave's Disease, etc.

As I said, I don't want to be poked and prodded with injections. I just want to be an observation and/or an oral history research participant--so to speak. Maybe the researchers could learn a few things from hearing about my journey.

Researchers and scientists could learn a whole lot more if they, first, focused on the "listening" before trying to focus on the treatment or drug aspect of studies.

Sometimes, it's just best to ask questions and listen to the answers when trying to figure out something--in this case, when trying to figure out the best treatment options for various health conditions. This listening approach could possibly lead to more curative conclusions versus band aide treatments.

Who knows? Pending the right conditions, maybe I'll be a "lab rat" one day.

Friday, November 20, 2009

In the News: New Breast Cancer Recommendations

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 to this recommendation, standard guidelines have suggested that a woman should receive an annual mammography, starting at the age of 40. In contradiction, The U.S. Preventative Services Task Force recommends that a woman has her first mammography at the age of 50 and every two years, thereafter.


If the recommendations of the task force were to ever be formally mandated, it would undoubtedly be at the cost of many lives. Kathleen Sebelius, The Secretary of Health and Human Services, has made it clear that women—in consultation with their doctors—should keep following the current mammography guidelines.


It is interesting—interesting indeed—that these recommendations have been made in the shadows of great health care debate. While Sebelius states that she can’t see insurance companies altering coverage of mammograms based on the recommendations of the task force, there is much cause for concern.


Increasingly, insurance companies have been barking about the costs associated with forking out money for tests and procedures that they deem unnecessary. These types of “scientific” recommendations could very well give insurance companies grounds for reducing coverage further and/or creating more stringent guidelines in terms of what they will or will not cover. It is for this reason that we must clearly voice our concerns and opinions. Things change, and these recommendations have planted seeds for negative change.


Unfortunately, we all know someone who has been diagnosed with cancer and/or has died from the disease. Many of us know someone who has been diagnosed with breast cancer, but they didn’t fit the typical breast cancer, patient composite—a woman diagnosed with breast cancer before the age of 40 or a man who has been diagnosed with breast cancer, for example.


Fortunately, the lives of many women have been saved by early detection through means of self breast exams and mammographies. One life saved is reason enough to support early detection and routine screenings.

If there were ever a time for socially conscious Americans to stand up in fight, this is that time. We must applaud all—including physicians and politicians—who have voiced a show of support against these potentially dangerous recommendations. A continued show of support for effective breast cancer guidelines will help to put these task force recommendations in the trash where they belong.


With all of this craziness going on, I then woke up this morning to hear that there are recommendations to change guidelines for the annual pap smear. What next? Hopefully, there won’t be anymore harmful recommendations in the near future!!!


For further reading, please review the following articles:


New Advice: Skip Mammograms in 40's start at 50
http://news.yahoo.com/s/ap/20091116/ap_on_he_me/us_med_mammogram_advice


US Mammogram Policy Will Not Change Says Health Secretary
http://www.medicalnewstoday.com/articles/171521.php

Pap Smear Guidelines: New recommendations call for tests every 2 years http://www.chicagotribune.com/health/chi-tc-nw-pap-smears-1119-1120nov20,0,6606495.story

Thursday, November 19, 2009

Tuesday, November 17, 2009

Botox Injection Day

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 treatment. As usual, I'm glad that's over with!

Sunday, November 15, 2009

My Latest Tweets and Retweets

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/ClmM

Food Poisoning May Hurt For Life @ http://bit.ly/4f54Wk

My reflection on Living With Pain @ http://vonneb.wordpress.com/2009/

Lupus explained: http://bit.ly/1Rr85R

Thursday, November 12, 2009

Can I Get An Autoimmune Specialist?

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 disorders.

Personally, I see an Endocrinologist once a year; he assesses my Thyroid Hormone levels. Even when I feel like crap, these numbers are usually stable. Unfortunately, I am being seen by a specialist whose primary training has more than likely been in the area of diabetes and/or another area that fits under the Endocrinology umbrella.

I have Grave's Disease (an Autoimmune Disease) which has caused my thyroid to dysfunction. The Autoimmune aspect of my illness has never been addressed by any of my 10 Endocrinologists. We patients who have Thyroid issues, which stem from an Autoimmune disorder, have been lumped in with patients who simply have Thyroid disorders. As a result, my "specialists" have had no information for me in terms of the importance of avoiding inflammation and avoiding certain foods, for example. In fact, until I started researching the Autoimmune aspect of my illness a few years ago, I had no idea about the devastating impact that Grave's disease can have on the entire body.

It is for this reason that I think I would be better served under an Autoimmune Specialist. I'm not talking about a doctor who treats patients for an ailment and that patient happens to have an Autoimmune Disorder. I want Autoimmune Disease to be the doctor's specialty--treating autoimmune disorders, only. Then, it would be even greater if the Autoimmune Disorder Specialist could have a sub specialty (i.e. an Autoimmune Specialists who specializes in Sarcoidosis or an Autoimmune Specialist who specializes in Lupus, for example).

Typically, Lupus patients, for example, are treated by Rheumatologists. Rheumatologists are doctors who specialize in Arthritis and other diseases of the joints, muscles, and bones. Wouldn't it be more beneficial for a Lupus patient to be treated by an Autoimmune Specialists who specializes in Lupus versus a Rheumatolgist who has an interest or extensive knowledge about Lupus? This type of specialization would potentially offer a better course of treatment for patients who are suffering from Autoimmune Disorders.

There are Clinical Immunologists out there. But, correct me if I'm wrong, these doctors seem to deal more with allergies and areas such as Asthma. I have an Allergist/Immunologist and his focus has been on trying to help me to get a handle on my food intolerances. When I've asked him questions about my Autoimmune Disorder in relation to my other issues, he hasn't had much for me.

What will it take? Good Autoimmune Specialists will not simply fall out of the sky. These specialists would need to receive extensive training, and they should be required to keep abreast of the latest research into specific Autoimmune Disorders. With this extensive training, they would be able to do more "outside-of-the- box" thinking. And, research should always include focus groups that are solely formed to receive information from Autoimmune Disorder patients. In dealing with Autoimmune Disorders, the textbook is not always adequate. To get the real, low down story, patient involvement is absolutely essential.

I hope that one day there will be specialists who can truly and fully understand the plight of a person with an Autoimmune Disease!

Perhaps I'm oblivious to the fact that there are Autoimmune Specialists out there. I have tried to find this type of doctor in my city, but I have been unsuccessful. If anyone has a good Autoimmune Specialist (not an alternative or holistic doctor, please), please let me know. I would greatly appreciate the referral!!!

_______________________________________________

After writing this post, I decided to Google: Autoimmne Specialists (I wanted to make sure I hadn't overlooked anything in my search). Unsurprisingly, I didn't quite find what I was looking for. However, below is an interesting article. The article was written in 2000, but, unfortunately, it doesn't seem that much progress has been made in terms of treating Autoimmune Diseases.


Title of Article: Autoimmune Diseases Poorly Understood, Difficult to Treat
http://archives.cnn.com/2000/HEALTH/07/04/autoimmune.disease.wmd/index.html

Tuesday, November 10, 2009

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

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

Monday, November 9, 2009

Recent Posts Written for blog, Illness and Life

Below are recent posts that I have written for the blog, Illness and Life.

Reflection: The Problem With Some Medical Professionals at:

http://vonneb.wordpress.com/2009/11/09/reflection-the-problem-with-some-medical-professionals-a-k-a-doctors/


Choosing To Be An Optimistic Realist at:

http://vonneb.wordpress.com/2009/11/01/choosing-to-be-an-optimistic-realist/

Response to Christy's Comment

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 (I now take the Armour Thyroid).

True, that nasty Graves' Disease can cause the heart rate to increase as well.

I did visit with a Cardiologist last week. Of course, he noticed the Tachycardia and a heart murmur. He said that it's not something to be alarmed about, but I appreciate that he has me scheduled for a number of tests to make sure all bases are covered.

I appreciate your sharing your positive experience regarding taking beta blockers. If the Cardiologist feels I need them, then I will probably be a good girl and take them.

Thanks again,
ChyvonneB

Thursday, November 5, 2009

Is it Dystonia or a Hoax?

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 and diseases such as Parkinson's Disease which is idiopathic in nature or does not have a determined origin.

Like Parkinson's Disease, it is speculated that Dystonia may be caused by genetics and/or environmental toxins that have assaulted the neurological system of people with the disorder. Currently, there is not a cure for either disorder.

There are many types of Dystonia. As in my case, the muscles in my neck contract involuntarily. For others, the eyes are affected. In some cases, the person's whole body is affected by the disorder. The commonality of the disorder is that there are spasms and pain involved in all cases. There are treatments options--including Botox injections, potent muscle relaxants, and an invasive brain surgery procedure (DBS)--that work for some and not for others.

I will be interested,in the days to come, to see whether or not this young lady has actually been stricken with Dystonia or not. If it turns out that Jennings has intentionally lied about having symptoms of Dystonia, it will be unfortunate for all of the people who have actually been stricken with this painful disorder.

We don't want to be exploited. We just want to bring awareness to this disorder in hopes of more funding for research and better treatment options.

Sunday, November 1, 2009

Drug Induced Drowsiness: The Effects of Taking Flexeril

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 a while. When I take Flexeril, I always take it in the evening, because I know that I will be no good at all if I take it during the day. The next day I feel all tingly and sort of like I am there but not there. I don't like that feeling. It takes at least a day and a half to two days for it to wear off. Actually, I want to say that I still have it in my system even after two days.

My prescription says to take it three times a day. Boy, I would really feel like a zombie if I took it three times a day! So, I've been taking it at the height of spasms--when I can't take the discomfort of tightened neck muscles anymore. So, I've been taking it a few times a week (one pill per day; a few times a week).

The Flexeril helps to loosen the muscles in my neck a little. But, I can't seem to fully enjoy the effects, because I can't mentally focus due to the drug induced drowsiness. I've also noticed that the muscles in the front of my neck tighten up more once the Flexeril starts to wear off. I have no idea why that seems to be happening.

Also, I've noticed actual pain shooting up, occasionally, in my right arm and the left side of my neck. This used to be common (pain and spasms all over), but Botox shots have helped to cover the pain, to a certain extent, in these areas. I'm not sure if the reoccurring pain is because the effects from the last Botox shot are wearing off and I need another shot or if it's because the weather is becoming colder and rainier.

I am scheduled for another Botox shot during the middle of November. Hopefully, I will receive more relief for the constantly spasming right side of my neck. That would be wonderful.

Monday, October 26, 2009

I Received Help in Spreading the Word About Dystonia

"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 was to laugh, because it looked like a prank or joke. As I read further, she stated that she now realizes that the woman has Dystonia and that she prays for her recovery.

After reading her blog entry, I wrote a brief message on Nieya's blog about my experiences with Cervical Dystonia. I stated that more people are slowly becoming aware of this cruel disorder due to this unfortunate "Flu shot" incident and through media coverage about the disorder that has been on shows such as The Doctors, The Oprah Winfrey Show, The Today Show, and a few others. I also mentioned that I hope more research and funding will be given to this disorder and similar disorders.

This morning, I got a nice surprise that literally put tears in my eyes. I have an alert on one of my email accounts that will alert me to certain topics such as Dystonia. So, this morning, Nieya's blog popped up as one of my alerts.

So, I downloaded her blog. As I started reading her most recent entry, I noticed that she wrote about my comment to her. She discussed how she had not been aware of Dystonia (most people have never heard of it). She also mentioned how she researched the disorder and she encouraged her readers to read my blog to learn more about Dystonia.

In addition, she wrote me a very touching message regarding my spirit and courage.

I responded to her with a very warm message. I was very moved by her empathy. I was also impressed and thankful for her willingness to appeal to others to educate themselves about this disorder. She even placed a Dystonia Ribbon on her blog. Thanks!

Thursday, October 22, 2009

Woman Develops Dystonia After Receiving the Flu Shot

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 viewed, an ER doctor accused the young woman of having a psychogenic case of Dystonia or in other words, it's all in her head. Is this possible? Yes, there are many cases in which people have psychogenic illnesses. However, in viewing footage of this woman, I believe that she unfortunately has Dystonia.

On the same news program, the reporter who intereviewed the ER doctor about this case brought up a very valid point. He brought up the fact that there were cases of Guillain Barre Syndrome, an illness that affects the neurological system, that were directly associated with people receiving the Swine Flu Vaccination in the 1960's. All the good doctor could say is, "That's true."


It's funny how when something is inexplicable, doctors and people in general often try to label the person as a nut case. That's like saying, "You have symptoms of a cold, but we can't prove exactly why you have the symptoms of a cold. So, you could not possibly have a real cold." That's ridiculous!

Should people be afraid of receiving the Flu shot?
In my opinion, people should be leary of anything that they put into their bodies. However, as statistics state, this woman had a reaction that might affect one in a million people. With that being said, it's no different than the millions of children getting the MMR series of vaccinations and some of them becoming Autistic shortly after. While this is a controversial topic, it makes sense that some unlucky few will have a reaction to any substance.

I just wish that it were possible to determine individual health risks before taking these types of vaccinations. Although there is a way to test the function of the immune system before giving children the MMR series of vaccinations, the test is not widely administered by doctors.

While I have Cervical Dystonia which mainly affects my neck--which is painful and uncomfortable enough, I could not imagine having this disorder throughout the whole body. I pray that the Lord gives this woman great emotional strength, because she will need it. Although there is no cure for the disorder, I pray the Lord grants a miracle and heals this young lady.

Below is footage of the woman who developed Dystonia after receiving the Flu shot.



No Surgery For Me

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 surgery.

During the physical, I saw a physician's assistant who did the basics like taking my blood pressure. Then, I saw someone who took my blood and performed the EKG. Then, the nurse came in and told me how to prepare for the surgery (i.e. my last meal, washing with bacterial soap the day before the procedure, etc). They were all very nice and personable.

The physician's assistant was very concerned about my rapid heart rate. Yesterday, my heart rate was 132. The highest that it has gotten to my knowledge is 150. The normal range for a heart rate, from my understanding, is 60 to 90 beats per minute.

I explained to him that I have Grave's Disease. "That shouldn't be why your heart rate is so fast," he said. His girlfriend has Grave's Disease, and she's on Synthroid and she's just fine (Everyone is an expert--LOL). I told him that I was glad for her, but I'm an unusual case and the poster child for side effects.

I have always been concerned about my rapid heart rate. On several occasions, I have been diagnosed with tachycardia (I always mispronounce that word). According to Webster's Dictionary, the definition of tachycardia is: an abnormally rapid heartbeat, caused by disease, medication, drugs, exercise, or emotional distress.

So, let's see: I have Grave's Disease (disease), I take thyroid medication (medication/drugs) and I've been taking a muscle relaxant (medication/drugs), and I was in the hospital--with spasms in my neck due to Dystonia-- a few days before a scheduled surgery(emotional distress). Hey, four out of five possibilites ain't bad.

The PA told me that I should be on a beta blocker, because it would help to slow my heart rate down. For years, I've been told that I need to be on one. However, one of the listed side effects on my last prescription for beta blockers--which I didn't take--said that it could cause the heart to stop. So, I figured that a fast heart rate would be better than none at all.

The PA did get me thinking, though. He informed me of a study that included 70,000 people. The conclusion of the study was that people who needed beta blockers and took beta blockers lived longer than those who did not take them. He also told me that I can't keep walking around with my heart beating so fast. Even though I've been resistant in the past, I'm thinking about going back to a cardiologist and having them prescribe the bb's for me. I will pray on it. Obviously, I hate medication and I hate side effects (i.e. drowsiness). So, we'll see...

As of this morning, I had not received a call telling me whether or not I would be approved for surgery. I prayed on it and talked to my husband and my mother. So, to make a long story shorter, I decided to cancel my procedure--before the decision was made for me. I simply did not feel comfortable being under anesthesia with my rapid heart rate.

And, by the way, I do greatly appreciate the PA's concern. He could've just given me the typical response, "It'll be okay. There's nothing to worry about." I'm so glad that he took the time to care.

Tuesday, October 20, 2009

Chronic Illness and Finding Support

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 not take them long term due to the possible effects on the body. In addition, I have been getting Botox injections for the muscle spasms every three months since April of 2008 when I was diagnosed with the disorder. The left side of my neck seems better. The right side of the neck spasms all day. So, it feels like a super strength rubber band constantly trying to pull my neck down.

My internist gave me a muscle relaxant called Flexeril. It makes me very drowsy. But, it seems to help with the spasms. Last year when I tried a muscle relaxant, there was no relief. Possibly, if I would have taken the extremely high dosage of medications that were prescribed by my neurologist, I might have found some relief. Although I was in great pain and discomfort, I was unwilling to be drugged out of my skull and chose not to take the meds.

Lord I pray: Please let the muscle relaxant release the spasms so well that they never return. Please continue to give me strength and courage. Amen.



P.S. I would love to talk with someone who has been afflicted with Cervical Dystonia and has gotten considerably better by any means (i.e. Miracle, diet, exercise, medicine, Botox, etc.). Please contact me through this blog if you have any tips for me.

For those who are struggling with Dystonia or any other illness, I pray that God continues to grant you strength and courage!

Communication and Chronic Illness

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. As a person who has Dystonia, for example, I have not come across any local support groups. But, I was able to find a group of people who have Dystonia on WEGO health, an online health website. On this site, I found out a lot of information about the disorder including the various treatments and how differently each person is afflicted by this disorder.

I also have a friend who has Multiple Sclerosis. While our issues are different in many ways, we can still relate to many of the same things. We often discuss the emotional side of dealing with chronic illness. She understands having lost so much at such an early age. We also lift each other up through prayer and positive words.

When facing a chronic illness, it is easy to get depressed and to feel isolated. One day you are up and the next day you might be down. It helps to get those feelings out. It helps to communicate with those who are going through similar. If you can't get out, hopefully you can find a website in which you can share your concerns and questions.

Saturday, September 26, 2009

I Had the Colonoscopy...

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. During the procedure, the doctor removed four polyps, and a biopsy (a usual procedure done when polyps are found) was performed on the polyps. I was told that the polyps that were removed from my small intestine were called Fundic Gland Polyps. Thankfully, the polyps were benign.

Due to my age of 36 (most people with the above type of polyps are older), my doctor inquired about my familial history of polyps. While, I have a few family members--on my mother's side of the family--who have undergone Colonoscopies, none of my relatives have been told that they had this type of polyp. Although, a second cousin on my father's side of the family recently passed away at the age of 47 from Colon Cancer, I do not have a thorough knowledge about the medical history of people who are on my father's side of the family.

Understandably, my Gastroenterologist suggested that I have a Colonoscopy. A Colonoscopy is a procedure that allows the doctor to view the large intestine which is made up of the rectum and the colon. So, I had the Colonoscopy on Friday.

There is no necessary preparation for an Upper GI Endoscopy, but there is a preparation process for the Colonoscopy. There are various preparation kits, but my preparation process included drinking a 10 oz. glass of chilled Magnesium Citrate and taking 6 Dulcolax tablets. The purpose of the preparation is to cleanse the system of fecal matter so that the doctor will be able to clearly see inside of the colon. Needless to say, I did not sleep well that night due to the "cleansing" of my system.

While the medical staff was very pleasant and accommodating, I did receive somewhat of a surprise just prior to being taken into the room for the procedure. I was told that I would be having the Colonoscopy AND another Upper GI Endoscopy procedure. According to my doctor-- during the procedure that was done in July--he had found 13 more small, Fundic Gland Polyps in my Upper GI tract. He said that the polyps were not cancerous but could turn into cancer, so it was best to remove them. While I was a bit disturbed that I hadn't been informed of these polyps (I had only been told about 4 of the polyps), I--of course--agreed to the additional procedure, because I knew it was in my best interest.

Once again, I was placed into a "twilight" sleep. During my procedure, 13 polyps were removed from the Upper GI Tract, and two polyps were identified in the colon. One of the Colon Polyps was removed. I thought that this would be the final procedure regarding my intestines, but my Gastroenterologist referred me to a surgeon to remove the other Colon Polyp. My Gastroenterologist said he did not feel comfortable removing the polyp due to its large size and positioning within my colon. So, my next step is to consult with the surgeon.

***Please note: Due to the Colonoscopy being such a good indicator of potential colon cancer, it is currently recommended that people have a Colonoscopy every ten years, starting at age 50. For people who have risk factors (i.e. familial history of colon cancer), there may be an earlier age recommendation, and it may be recommended that the procedure occur on a more frequent basis.

References/Resources:

http://www.webmd.com/colorectal-cancer/colonoscopy-16695
General information: Colonoscopy

http://digestive.niddk.nih.gov/ddiseases/pubs/upperendoscopy/

Information: Upper GI Endoscopy

http://www.gihealth.com/html/education/colonpolyps.html
general information about colon polyps

http://en.wikipedia.org/wiki/Fundic_gland_polyposis
Information about Fundic Gland Polyps










































Tuesday, September 22, 2009

Sunday, September 6, 2009

Excerpt from Beauty Does Lie: The Untold Stories of Autoimmune Diseases by Courtney Smith

The following is an excerpt from the film, Beauty Does Lie: The Untold Stories of Autoimmune Diseases, by Courtney Smith, founder of Control Your Auto Productions. Smith lives with Myasthenia Gravis, an Autoimmune Disease. Through this film, she has shown that "You can look healthy but still be suffering from a potentially debilitating disease."


Saturday, September 5, 2009

Lupus Patients Needed for Clinical Trials

I have never been part of a clinical trial. So, I do not promote them, and I am not against them--I don't have a position. However, I do know that knowledge is gained about certain disorders through those who participate in research and studies. So, with that being said, the following link is to an article that discusses that there is a shortage of Lupus patients participating in clinical trials.

http://femmenoir.net/2009/09/04/shortage-of-lupus-patients-challenges-growing-number-of-clinical-studies/

Wednesday, September 2, 2009

Colonoscopy

I am scheduled for a Colonoscopy. I am not looking forward to that. Last month, I had an Upper GI Endoscopy. That procedure went pretty well. I was nervous, but I passed out pretty quickly after all of the drugs were given to me through an IV.

The test revealed that I had about five Fundic Gland Polyps. Thankfully they were benign. But, the doctor asked if a I had a familial history of polyps, because it was unusual for someone my age to have these types of polyps (I'm 36). I have had a few relatives who have had polyps removed, but they are older than I am. Then again, I seem to get quite a few things that are out of the usual .

I was scheduled to have a Colonoscopy last year. During that time, I was so sick and had just been diagnosed with the Dystonia. Besides, I did attempt to go through with the procedure, but I kept getting sick (vomiting) after taking the preparation to clear the system. So, I took that as a sign that I didn't need to do it.

This time, they're giving me a different type of preparation. On the day prior to the procedure I can't eat or drink anything except clear fluids. I will be allowed to take my Thyroid medication in the morning. But, I am supposed to skip my afternoon dosage. That concerns me, because I get fatigued when I skip a dosage of my thyroid medication. On top of that, I'll be hungry too. I might not me the nicest person to be around on that day.

I pray that everything will be okay. I'm the first one of my friends to have this done. I feel special (Not!).

Thursday, August 27, 2009

Shortage of Natural Thyroid Hormone

The following message is in regards to the shortage and the future, potential unavailability of Natural Thyroid Hormone.

"We must unite and fight!!! We need better care by our Endocrinologists in the first place. Now, we need to ensure that patients' Endocrinological care gets better. We must ensure that Natural Thyroid Hormone only gets better and doesn't go away. Maybe, this is a blessing in disguise--as long as it doesn't last.

I can see the magazine articles, 'How would you like it if a medicine you needed to live was not available?' or 'Why Do Patients With Thyroid Disorders Receive Such Poor Quality of Care?' or 'Why Are Patients Who Have Thyroid Disorders Being Forced to Take Synthetic Thyroid Hormone?'...And the list of potential titles could go on and on. Let's bring the spotlight on this situation.

Let's make history: 'Facebook and Twitter Unite People who suffer from Thyroid Disorders.'"

My fellow brothers and sisters, please also visit Stop the Thyroid Madness group on Facebook as well and Save Natural Thyroid on Facebook.

Monday, August 24, 2009

A Quote for the Day

In times of great stress or adversity, it's always best to keep busy, to plow your anger and your energy into something positive.

-Lee Iacocca

Sunday, August 23, 2009

Stories From Patients Who Receive Botox Shots for Cervical Dystonia

The following is a link to the Botox website. Patients discuss their experiences with receiving Botox injections for the treatment of Cervical Dystonia. I have been receiving these injections every 3-6 months. While it helps, it is not a cure for CD. As, there is not yet a cure for this dsorder. For some, the twisting and pain caused by CD is lessened by receiving Botox shots. The shots must be repeated, because the affects from the shots only last for a few months.

http://www.botoxmedical.com/PatientStories.aspx?pat=4

Another Desiccated Thyroid Hormone Medication Shortage

I am seriously worried. Once again there is a shortage of Desiccated Thyroid Hormone products. Currenty, I am taking Armour Thyroid. As many people, I do not do well on Synthetic Thyroid Hormone. There are other disturbing rumors that I'm hearing regarding Desiccated Thyroid Hormone and the FDA (i.e. the FDA may be trying to take Desiccated Thyroid products off of the market). I pray this doesn't happen. While, I don't feel perfectly on any Thyroid medication, it would be a very sad day if I were forced to take Synthetic Thyroid Hormone. I hope and pray that I am never faced with that alternative. For more information, visit:


http://www.stopthethyroidmadness.com/
Stop The Thyroid Madness.com

http://thyroid.about.com/
Articles about shortage of thyroid medication

http://www.armourthyroid.com/
Armour Thyroid site


http://www.rlclabs.com/

RLC Labs: Manufacturers of Naturthroid and Westhroid





Friday, August 21, 2009

My Story (Part Nine): Questions and Theories

In the last "My Story" post, I discussed how I visited an alternative doctor in search of some help for my medical conditions. That "doctor" turned out to be not worthy of my money. Although I invested a lot of money and time in dealing with this doctor, he ultimately was not the doctor for me.

But, as I said, tests that were ordered by this doctor did make me start to see that I didn't JUST have Dystonia and Grave's Disease and problems with my medication. But, there seemed to be some things going on with my gut. This doctor had ordered tests that most traditional doctors would not have ordered--stool tests, hair analysis, and blood test to detect a variety of things. Through these tests, which were analyzed by a reputable lab, I received insight into a wide range of factors including that my digestive enzyme levels were extremely low and that I had several infections within my intestines. The tests revealed intestinal infections such as Giardia, Toxoplasmosis, etc.


I am still wondering how I got all of these infections in my stomach. In looking back, I know that I suffered a bout of food poisoning (September/October 2007) due to my refrigerator not getting cold enough. Stupidly, I kept putting off buying a new refrigerator, but I eventually bought another refrigerator. Prior to the purchase, I did experience extensive issues with diarrhea --I kept saying I was going to the doctor. But, after a few weeks, the diarrhea stopped; Maybe the symptoms disappeared, because my food was at the correct temperature due to my buying the new refrigerator. That bout of food poisoning could just be a piece of the puzzle.




I will always have questions that include:



1. How did I get the stomach infections?

2. Why did I react so poorly/strangely to Synthroid for nine years?

3. How do I get rid of the infections and prevent the potential recurrence of infections?

4. Did intestinal damage help to cause my illnesses?

5. Did intestinal damage cause me to have so many vitamin deficiencies (i.e. due to malabsorption)?

6. Did my Autoimmune Disease help to cause my Dystonia and intestinal issues?

7. Did my medications (i.e. Thyroid medications, antidepressants) help to cause neurological damage?

8. Why did I develop so many food intolerances and how long did I unknowingly have food intolerances?

9. Did the "overdose" or combination of Thyroid medication coupled with my other meds at the time help to trigger the Dystonia?



These are just a few of the questions that I have regarding my situation. They may or may not ever be answered. All I can do is research various areas in science/medicine/alternative medicine and try to figure out as much as I can figure out. Will I ever know for sure? Probably not.



Bottom line--I believe that infections and enviornmental toxins (i.e. medicines, food intolerances, etc.) caused my system to break down. I am unsure as to the order in which these triggers occurred in my body.



The majority of the immune system is in the stomach. If that's not working properly, then you will potentially have a problem--especially if you are genetically prone to Autoimmune Disease (i.e. Grave's Disease). It just takes that trigger (i.e. stress, allergies, medications, infections, etc.) to throw everything off balance.


My doctors have no clue as to how I got Dystonia. I will always have my theories. My doctors (i.e. neurologists) have not taken the time to really analyze my medical history. They write it down on paper, but that is as far as it goes. From what I hear, that is the norm, unfortunately. But, for true understanding you must ask questions and create theories. But, it's easier for most doctors to say, "No, 'that' couldn't cause Dystonia," or "The medication is not causing 'that' problem." Talk about malpractice...Malpractice should include lack of thought and concern into a patient's case.



There are some things that we will never receive answers. I do believe that God has a plan, and that He will not always reveal why you go through something.



I don't pursue getting well and finding answers because I lack faith. Although I do get tired and weary sometimes, I pursue getting well and finding answers because I do have faith. I have faith that He will guide me in finding what He wants me to know.



Next Post: Visit to a Gastroenterologist; Breathe test reveals bacteria in my gut

Sunday, August 16, 2009

Have you had problems with Synthroid (A Synthetic Thyroid Hormone Replacement Medicine)?

I urge all of you who have used Synthroid and have had problems to visit Janie's blog at: http://www.stopthethyroidmadness.com/blog/.

Thanks to Janie for her tireless work and linking us to valuable resources. I really appreciate it! I am passionate about offering my support in helping others to avoid the dangerous pitfalls of Synthroid and similar synthetic Thryoid meds. Doctors and the FDA need to be educated about the problems that Synthroid causes in some people. In addition, doctors/medical professionals need to be educated/trained on how to dose/prescribe desiccated thyroid hormone products.

Please visit the above blog. Read it! And, please complete as much as you can (i.e. the ratings on Synthroid). I have done three of the listed ratings. I will do more. I just have to pace myself. OPPORTUNITIES to tell the real deal about Synthroid are located at the BOTTOM of the page. PLEASE take the time! There is Power in Numbers. Let our voices (cries) be heard!!!!

Saturday, August 15, 2009

I'm trying Twitter again. We'll see how it goes.


I am trying Twitter again. Come join me to see what I'm tweeting about .
On Twitter, I will discuss health related issues. I may also include information about some of my interests--writing, social issues, etc.
Join me on Twitter by clicking on the "Twitter" picture that appears to the write of this blog.

Wednesday, August 5, 2009

Article: The Root Causes of Autoimmune Illness

The following is a link to an article called The Root Causes of Autoimmune Illness by Dr. Ben Kim:

http://drbenkim.com/treat-prevent-autoimmune-illness.htm

Tuesday, August 4, 2009

A Visit With My Doctor


I had an appointment with my internist. I needed her to fill out/update some paperwork regarding my leave from work. It went very well. This doctor was the first and only doctor to send me to a neurologist when I started showing symptoms of Dystonia.

We had a pleasant conversation. After filling out the paperwork she turned to me and said, "You know that in less than 100 years they'll be able to figure out the gene causing Dystonia and basically cure it."

From there we had a further discussion. She mentioned how my illness had genetic components. I told her that I agreed with that even though my genetic test came back negative. I totally theorize that there has to be a genetic component--it just takes the right trigger. Unfortunately, I had the right trigger (i.e. environmental, etc.) to get Dystonia.

She also mentioned ties between asthma and allergies. She discussed other illnesses and how researchers are finally making connections with allergies, genetics, etc. I'm glad that such research is going on. Hopefully this type of ongoing research will potentially help many people who are suffering from a variety of illnesses.

My doctor gave me a wonderful compliment by saying that she could tell that I was highly intelligent. My doctor inspired me to basically find my niche even if it's not being able to go back into the classroom as a teacher. As she said, "You can teach in other ways." Sometimes you just need to be inspired by others.

I told her that I really appreciated her taking the time to talk with me. I like the fact that a lot of her "out of the box" thinking is along the same lines of my thinking in terms of health and research.

My doctor encouraged me to keep reading and finding out information. She stated, "Sometimes the patient teaches the doctor." She even gave me a few book titles to read. I have NEVER had this type of conversation with any of my doctors.

I truly appreciate her taking the time with me. Thanks, Doctor. Hopefully, we can share again.

Sunday, August 2, 2009

Story reprinted from Invisible Illness.com: "Can Those with an Invisible Illness Park in Blue Spots Without Others Seeing Red?"


While I can relate to the story below, it is a story written by another person with an "Invisible Illness." I have reprinted it from InvisibleIllness.com.

Can Those with an Invisible Illness Park in the Blue Spots Without Others Seeing Red?


“Do you know the fine for using someone else’s handicapped parking permit is $300?”
“That parking spot is saved for the disabled! You should be ashamed of yourself!”
Nearly everyone with an invisible illness has been told, “You don’t look disabled to me!” One of my friends replied, “Well, you don’t look stupid to me.” I just bite my lip to try to prevent the tears from forming, broken-hearted that I appear to be deceptive, when I would do anything to give back this parking perk that I use on a rare occasion.
As I circle the parking lot a fourth time on this day I hope for a spot to open up within two-hundred yards of the store, but there is nothing remotely close at this bustling superstore where I need to buy my prescriptions and milk for my toddler. My rheumatoid arthritis is flaring badly, causing extra fluid in my knees to dislocate pieces of loose bones. Every step is painful and unpredictable.
Finally I sigh in resignation and pull into the farthest “blue parking spot.” I reach for the placard–the one that has a bold white symbol of a wheelchair–and no, I don’t have a wheelchair–yet. So after fifteen years of having this “privilege” at my disposal I still warily scan the area before reluctantly dangling the placard from the rear view mirror. Is there anyone watching, wondering, or waiting, ready to confront me?
I’ve had scathing notes left on my windshield and many people, empowered by television exposés, have approached me with their opinions. Judgmental expressions and whispers sting just as much. My husband and I adopted a baby and when I would get my child of the car I would avoid eye contact with onlookers because I could hear their whispers of, “She’s not disabled! Or–if she is–she has no right to have a child!”
Nearly 1 in 2 Americans (133 million) live with a chronic illness. It could be diabetes, cancer, cystic fibrosis, fibromyalgia or even chronic back pain. Many illnesses make walking long distances impossible because of limited lung capacity, physical pain, or unpredictable numbness in the legs. According to statistics provided by the U.S. Census Bureau, about 96% of these illnesses are invisible. There is no sign of the illness existing, nor the use of an assistive device like a cane or a wheelchair.
I began National Invisible Chronic Illness Awareness Week in 2002, which is held annually in September, after witnessing thousands of people who had frustrations, fears, loneliness, and bitterness, about feeling invalidated. One’s illness, age, diagnosis, or level of disease degeneration, doesn’t change the emotional pain.
Strangers and loved ones alike doubt the severity of our illness or even the diagnosis. We’ve heard, “You look so good! You must be feeling better.” But we don’t feel better. We just bought some fake tan in a bottle and pasted on a smile.
National Invisible Chronic Illness Awareness Week is a time to acknowledge that invisible illness is more prevalent than we’d imagine and everyone–both those who are healthy and ill–can make a difference by encouraging someone with an invisible illness, rather than tearing someone down.
Are those parking spots painted blue because they give so many people the blues? That small area of square footage is a breeding ground for many frustrations as we are forced to defend our illness and character to total strangers. I’d gladly trade in my placard indefinitely for just a week of having my old body back when I could run, sit on the floor, or even hold a fork without tendons popping out of place.
I anticipate the day when a nationally designated system is formed. Texas law states that blue placards are for those who use assistive devices; red permits are for people with a “condition that impairs mobility.” In other states, red symbolizes six months of disability and blue is permanent. It’s confusing! And for one with invisible illness, the wheelchair symbol discredits both our physical pain and–in the eyes of others–our reputation. Until then, we rely on Invisible Illness Week bumper stickers.
The next time you see a healthy looking man loading groceries into his car–parked in the “blue spot”–don’t glare. Stop and offer to help him, or just smile nicely, giving him the benefit of the doubt. Seventy percent of suicides have uncontrollable physical pain as a factor. Your smile may save his life. At the least, it will astonish him, perhaps providing him with genuine encouragement he hasn’t felt for months.



List reprinted from www.invisibleillness.com: 54 Ways You Say Your Respond to "You look so good!"

The following is reprinted from Invisibleillness.com. Following the list are my comments/reactions to "You look so good."

54 Ways You Say You Respond to “You look so good!”

Over 1200 of you took our survey last year (you can still take it here if you want) and you shared how you respond to this compliment that pulls at the heartstrings.
Sometimes you just have to respond… a smile doesn’t say all that you want to say, but one of the temptations is to use sarcasm in our response.
Most of us can say that it depends on who says it. We may be more likely to smile and say, “If only it were true!” to a friend who doesn’t really get it. To the person behind at us the grocery store who commented about our groceries, we are more likely to say something sarcastic since we don’t have to deal with repercussions of a stressed relationship.
Just remember that our seemingly justifed bitter comments back at them can only alienate people more and it does nothing to create an awareness of invisible illness. But who of us doesn’t relate with wanting to say a few of these things on the list below?
The most telling comment I read was from a woman who simply said, “I wonder why they can’t see my pain in my eyes?” It’s a good reminder that though we sometimes think the world should accommodate our emotional needs, who around us is hurting for other reasons (divorce, loss of job, loss of loved one, etc.) and they are wondering about us, “Why can’t she see the pain in my eyes?”
Be sure to add your own at the bottom in the comments section!


I am hangin’ in there…
I am so blessed. God is so good.
Drugs are a wonderful thing
I have my good days and I have my bad days.
I clean up well.
I have my ‘good’ days….but this isn’t one of them!
Thanks, I wish I felt better.
That’s a perfect example of how you can never judge a book by it’s cover.
Thanks, but there are many aspects of MS which you don’t see … would you like to know more about it?
That’s what most people think since pain can’t be seen most of the time. Have you heard about Invisible Illness Week? It’s really helpful to let people now that most illness is invisible.
I’m trying to appreciate that fact. I know the day may come when I have to use a wheelchair or a cane, and my illness will be more visible.
You should be on the inside.
Thanks. I have more to be grateful for than I have to complain about - which means I have a LOT to be grateful for!
Well I guess I did good job on my makeup, because I am having a hard time to tell the truth.
…And that’s all that really matters, isn’t it?
Powder and paint, make you what you ain’t!
It took a lot of work to look like this.
It’s God shinning through me
It’s nice of you to think so, but you’re missing the pain and agony that I really am in.
And you look so wise. Looks can be deceiving though, huh?
I’m having a “good face” day.
Yeah. My kid thinks it’s cool I’m an ill person working under-cover!
I do a great job hiding how I really feel.My life is still very challenging and probably will always be, but I am hanging in there, keeping a positive faith, and gratitude as THE attitude. Thanks for their concern.
I’m trying my best to do well OVER my circumstances instead of being under them!
It’s up and down.
I’m still struggling, but it IS nice to have a day when I am able to pull myself together and make it out of the house!
I’m not complaining about my looks.
I’m very good at pretending.
Good, because if I looked like I feel it would scare you to death.
Actually, I still am really hurting…
I am 36 years old outside but 85 inside
Thank you. I’m on my way to the Oscars.
Thanks, I’m grateful for this good day.
Things aren’t always what they seem.
Praise God, I’m glad that he enables me to look so much better than I feel.
Thanks, that’s God’s joy shining through!
Have you ever heard of the spoon theory?
I am upright which is better the alternative
Thanks, want to swap bodies for a few days?
Thanks, I guess I am fortunate that I have an illness that can’t be seen.
Thanks. I like good days.
Want to step inside my skin?
It’s amazing what a shower can do. I guess I am all cried out for now
Thanks…I wish I felt it!
I’m not complaining about my looks.
I’m very good at pretending.
Looks can be deceiving (and smile)
Thank God for makeup!
Thank you for caring. I try to act like I feel better than I really do.
Thanks, I am trying to even though it will never go away. i just try to remember things could be worse.
I’d be great if it wasn’t for the pain.
I’d complain but who wants to listen.
If I can’t feel good, at least I am determined to look good!
I’m in good shape for the shape I am in!
What do you say? Or what would you say if you could say anything (keep it clean!)
* This list can be reprinted. Please add the following at the end: This list is compliments of National Invisible Chronic Illness Awareness Week at http://www.invisibleillness.com/, based on a survey of over 1200 respondents. Get involved in Invisible Illness Week each year during September, including our 5-day virtual conference online.
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A note from ChyvonneB in response to the reprinted article/list, "You Look So Good."
Words are only words. But as we know all too well, words and actions of others can sting. As you know, I've been grappling with "stinging" comments. "Oh, you shouldn't worry what others think" is a good response. I SHOULD NOT worry about what others think or say. That is true. However, the point is that some of those 'stingers' do slip into my consciousness and get to me.

My goal is to become "immune" to ignorance and rudeness or at least handle it much differently and not internalize it. Heck, some people make a daily ritual of seeing who they can piss off and offend. Why let someone get their jollies from intentionally trying to offend me? Not worth it...

Unfortunately, society IS driven by sensory perception and interpretation (i.e. appearances, sounds, etc.). That's just how it is. So, comments like "You look good today" or even "You sound good today" are commonplace. However, to a chronically ill person, certain comments/actions can be perceived or interpreted as being sarcastic, rude, insensitive, and nasty. It just depends on the person they're coming from and their issues. Notice I said THEIR issues.

Realistically, most people who make those types of comments to a Chronically Ill person are being genuine and actually feel that "You look good, today." But, there are those 'serial offenders' (those who prey on others in a targeted or random manner-it just depends). When a 'serial offender' strikes, the mind goes there: "Wonder if they are implying that I look too well to be ill?," "Wonder if they think...?", "Wonder if..." The wonder ifs could go on and on.

The 'serial offenders' make us question those who are really just making an innocent, good-hearted comment. We must not give the 'serial offenders' power!

Bottom line: Some people are simply jerks and they don't matter. Some people are simply occasional jerks and they don't matter. Many people are caring and concerned individuals who just don't get it. Many people are caring and concerned individuals who fully get it.

Bottom line: I have too much to be concerned with (i.e. living life and living the best I can with what I'm going through). I don't have the time to invest my energy into 'serial offenders' who come off as jerks or into those who just don't get it and won't get it.

Perhaps, receiving "interesting" comments that can be taken any way are just part of being a person who has a Chronic Illness or illnesses. Perhaps, I have offended (unintentionally) someone who has a Chronic Illness with an inappropriate comment. I wouldn't want them to be angry towards me. But, then again, I'm not a serial offender. I don't just go around fully loaded with remarks that are MEANT to sting. In fact, I know a Chronically Ill person who has the nerve to be a 'serial offender.' Go figure. Perhaps it is best to 'avoid' serial offenders or at the very least ignore 'serial offenders' when they choose to be offensive.

I cannot be overly sensitive to a casual question. I must refuse to live that way. Those who are trying to be a thorn in my side are becoming more and more obvious. While those who are genuine and sincere are obvious as well. Then you have those who are a thorn in the...on one day and genuine and sincere on the next. Then you have complete strangers who can fit into either category (i.e. waiters, customer service workers, etc.). It's all so complicated.

While my reactions may not always be perfect to imperfect offenses, I am working on becoming less reactive (internally as well as overtly) to stuff that just doesn't matter. Some days I will win the battle and some days I may not. It just depends on my mood. I'm tryin', though.

But, I am the one who has control over who get's the power. And, I give it to myself and those who support me!