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.