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.