"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!
Monday, October 26, 2009
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.
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.
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!
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.
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.
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
general information about colon polyps
http://en.wikipedia.org/wiki/Fundic_gland_polyposis
Information about Fundic Gland Polyps
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.htmlgeneral information about colon polyps
http://en.wikipedia.org/wiki/Fundic_gland_polyposis
Information about Fundic Gland Polyps
Thursday, September 24, 2009
Tuesday, September 22, 2009
In the News: Singer Juice Newton Will Perform in a Benefit Concert for Dystonia Research
Juice Newton, a Grammy Award winning country and pop-rock singer will perform in a benefit concert for Dystonia Research. View details at http://zikkir.com/health/5153. Way to go Juice Newton!
Friday, September 18, 2009
In The News: A Woman Raises Awareness for Dystonia
A Woman Raises Awareness for Dytonia
Please view the story at:
http://www.eveningnews24.co.uk/content/news/storyrss.aspx?brand=ENOnline&category=News&tBrand=ENOnline&tCategory=News&itemid=NOED12%20Sep%202009%2021%3A11%3A37%3A687
Please view the story at:
http://www.eveningnews24.co.uk/content/news/storyrss.aspx?brand=ENOnline&category=News&tBrand=ENOnline&tCategory=News&itemid=NOED12%20Sep%202009%2021%3A11%3A37%3A687
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/
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!).
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.
"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
-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
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.stopthethyroidmadness.com/
Stop The Thyroid Madness.com
http://thyroid.about.com/
Articles about shortage of thyroid medication
http://www.armourthyroid.com/
Armour Thyroid site
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.
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
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!!!!
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
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.
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.
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!
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!
Saturday, August 1, 2009
Update to Links I Like: Dr. Ben Kim, Experience Your Best Health
Dr. Ben Kim can be located under "Links I Like" or by clicking on the following:
http://drbenkim.com/welcome-message.html
http://drbenkim.com/welcome-message.html
Thursday, July 30, 2009
Attention: National Invisible Chronic Illness Awareness Week
National Invisible Chronic Illness Awareness Week is September 14-20, 2009.
Thanks "Novelty Patient", a blogger whom I follow, for the info.
Please show your support and share this date with others.
Please visit the site at:
http://invisibleillnessweek.com/?p=1331
I found the following lists on the above site especially humorous and right on time:
20 Things to Say to a Person Who is Ill
and
20 Things Not to Say to a Person Who is Ill
These lists let me know that I'm not being ultra sensitive on some of the stuff that has been a thorn in my side lately. We have to stick together. Posting "real" stuff let's us know that we who have Chronic Illnesses are not alone. We laugh and we cry just like everybody else. And, that's okay!
The Emotional Ups and Downs
For those who have been following my blog, you might sense that I have been kind of frustrated lately. Ma, you don't need to read this post (LOL), because you have listened to me vent. I'm sorry if I have stressed you with my emotions going up and down lately. But, thanks for listening anyway!
I'm not trying to make this blog negative. It is a blog to help people who are going through similar. If you are going through similar, then you probably encounter some of the emotional ups and downs. If you don't, that's great. But, this blog also helps me get my STUFF out. So, I can't apologize for that. Thanks to those who support!
As most of you know, being physically sick can also take an emotional toll. Trust me, I am thankful and grateful for what the Lord has given me. While I pray for healing and wish things would be better, I do know I'm blessed.
However, I have ALLOWED a close relative to get the best of me. I love this relative very much. But, some of the sarcastic, underlying comments they have been making have been surprising and very hurtful. I want to say,"Yes I know it could be worse. Yes, I know that such and such just passed away, but I'm alive. The Lord knows I'm thankful..."
I'm so trying to be repectful, because this person deserves my respect. (Anybody who knows me and is reading this, please do not ask me the "who" question--thank you very much).
But, it's like this relative shows concern for my situation but then turns around and makes an underlying comment that makes me feel like they feel that I'm complaining or ungrateful when all I've ever been is sympathetic and caring towards them and their issues. I just don't get where it's coming from. I have a few other relatives/friends who don't get it. But, it hurts more when the person is "close."
Trust me, I don't go around complaining about my pain constantly. But, if someone asks how I'm doing I am more honest about it than in the past. If I'm in pain, I do say so. I'm not looking for sympathy. I just feel it's best to be honest.
Another reason why I feel honesty is best is because I've done the "I'm feeling okay thing" when I'm really not feeling okay. Then, you get responses the next time you're not feeling so well like, "I THOUGHT you were feeling better."
That's when I want to say, "Hold up, I have an illness that causes pain on a daily basis--some days worse than others." But, I shouldn't have to explain that. What I'm finding is that some people want you to say you're good just to make themselves feel better. To me, that's selfish and irrational.
As I know, I have to develop a stronger armour. I cannot keep going around letting others who make unfounded, ridiculous comments bother me. If anything, this will definitely make me a stronger person. But, on the flip side, I am finding that I am becoming more antisocial so that I don't have to deal with...I don't want to be like that. I must find a balance.
I will continue to pray on it as usual. I know life is too short to get agitated by people. I am so thankful for those I can depend upon. I am also thankful for those I love who don't quite get it. I must try to maintain my patience and try to lead by example on how to be a sensitive individual. The Lord did bless me with that virtue and I am thankful for it.
________________________________________________
"Peace I leave with you...
Do not let your hearts be troubled,
neither let them be afraid."
John 14:27
I'm not trying to make this blog negative. It is a blog to help people who are going through similar. If you are going through similar, then you probably encounter some of the emotional ups and downs. If you don't, that's great. But, this blog also helps me get my STUFF out. So, I can't apologize for that. Thanks to those who support!
As most of you know, being physically sick can also take an emotional toll. Trust me, I am thankful and grateful for what the Lord has given me. While I pray for healing and wish things would be better, I do know I'm blessed.
However, I have ALLOWED a close relative to get the best of me. I love this relative very much. But, some of the sarcastic, underlying comments they have been making have been surprising and very hurtful. I want to say,"Yes I know it could be worse. Yes, I know that such and such just passed away, but I'm alive. The Lord knows I'm thankful..."
I'm so trying to be repectful, because this person deserves my respect. (Anybody who knows me and is reading this, please do not ask me the "who" question--thank you very much).
But, it's like this relative shows concern for my situation but then turns around and makes an underlying comment that makes me feel like they feel that I'm complaining or ungrateful when all I've ever been is sympathetic and caring towards them and their issues. I just don't get where it's coming from. I have a few other relatives/friends who don't get it. But, it hurts more when the person is "close."
Trust me, I don't go around complaining about my pain constantly. But, if someone asks how I'm doing I am more honest about it than in the past. If I'm in pain, I do say so. I'm not looking for sympathy. I just feel it's best to be honest.
Another reason why I feel honesty is best is because I've done the "I'm feeling okay thing" when I'm really not feeling okay. Then, you get responses the next time you're not feeling so well like, "I THOUGHT you were feeling better."
That's when I want to say, "Hold up, I have an illness that causes pain on a daily basis--some days worse than others." But, I shouldn't have to explain that. What I'm finding is that some people want you to say you're good just to make themselves feel better. To me, that's selfish and irrational.
As I know, I have to develop a stronger armour. I cannot keep going around letting others who make unfounded, ridiculous comments bother me. If anything, this will definitely make me a stronger person. But, on the flip side, I am finding that I am becoming more antisocial so that I don't have to deal with...I don't want to be like that. I must find a balance.
I will continue to pray on it as usual. I know life is too short to get agitated by people. I am so thankful for those I can depend upon. I am also thankful for those I love who don't quite get it. I must try to maintain my patience and try to lead by example on how to be a sensitive individual. The Lord did bless me with that virtue and I am thankful for it.
________________________________________________
"Peace I leave with you...
Do not let your hearts be troubled,
neither let them be afraid."
John 14:27
Tuesday, July 28, 2009
The Librarian
I was at the library today. I was waiting for assistance from the librarian. I saw these teenagers who were laughing and moving their heads funnily. So, at first I wondered if they were laughing at me since my head does move involuntarily due to the Dystonic spasms and I do shake sometimes.
The degree to which my symptoms appear depend on the day--some days it's quite a bit and many days it's hardly noticeable to anyone but me. Some might call my thinking they were laughing at me being paranoid. I just call it being real, because I do look 'different' when my neck is spasming or I'm having other issues related to my illnesses.
Then, I realized they were laughing at the librarian who was helping them. This lady was sitting at the computer. She has a noticeable tremor where her head and other body parts shake, but it's especially her head and neck. I noticed it before and thought that it could be a tremor or an early stage of Parkinson's--hopefully not.
Anyway, I said to myself, "Kids can be so cruel." Then again adults can be cruel too. I've encountered both. We can talk about sensitivity until we are blue in the face. After a certain point, you either have it or you don't.
I wondered if the lady who was being mocked realized she was being mocked? I wondered if she internalizes the cruelty of others? I wondered if she had developed a strong armour to resist the affects of the ignorant? I hope she has a strong armour especially since she works in a public setting. I'm in the process of developing a stronger armour.
I've talked to this lady several times. She seems very pleasant and nice. I'm glad that she's pleasant. She hasn't let herself become bitter due to her illness or issues. She was probably a pleasant person before she developed these issues. And, that person is who I see.
The degree to which my symptoms appear depend on the day--some days it's quite a bit and many days it's hardly noticeable to anyone but me. Some might call my thinking they were laughing at me being paranoid. I just call it being real, because I do look 'different' when my neck is spasming or I'm having other issues related to my illnesses.
Then, I realized they were laughing at the librarian who was helping them. This lady was sitting at the computer. She has a noticeable tremor where her head and other body parts shake, but it's especially her head and neck. I noticed it before and thought that it could be a tremor or an early stage of Parkinson's--hopefully not.
Anyway, I said to myself, "Kids can be so cruel." Then again adults can be cruel too. I've encountered both. We can talk about sensitivity until we are blue in the face. After a certain point, you either have it or you don't.
I wondered if the lady who was being mocked realized she was being mocked? I wondered if she internalizes the cruelty of others? I wondered if she had developed a strong armour to resist the affects of the ignorant? I hope she has a strong armour especially since she works in a public setting. I'm in the process of developing a stronger armour.
I've talked to this lady several times. She seems very pleasant and nice. I'm glad that she's pleasant. She hasn't let herself become bitter due to her illness or issues. She was probably a pleasant person before she developed these issues. And, that person is who I see.
Sunday, July 26, 2009
Interesting in the News: An Article About Leaky Gut Syndrome
Recently, Scientific American published an article about Leaky Gut Syndrome or intestinal permeability, a condition that I have been diagnosed with. The article discusses how LGS is commonly seen in people who suffer with Autoimmune Disorders as well as in people who suffer from other disorders including allergies and asthma . Hopefully, this article will bring much needed attention to Leaky Gut Syndrome.
You can view information about this article at:
http://www.examiner.com/x-4737-Seattle-Alternative-Medicine-Examiner~y2009m7d25-What-is-leaky-gut
You can view information about this article at:
http://www.examiner.com/x-4737-Seattle-Alternative-Medicine-Examiner~y2009m7d25-What-is-leaky-gut
Update: Addition to "Links I Like"
Please visit Links I Like to visit a comprehensive site that discusses Complimentary and Alternative medicine.
The Complimentary and Alternative Medicine site can also be located at
http://www.thecamreport.com/index.php/category/f-dietary/cod-liver-oil/.
The Complimentary and Alternative Medicine site can also be located at
http://www.thecamreport.com/index.php/category/f-dietary/cod-liver-oil/.
Update: New Post to "Spotlight on Autoimmune Disease"
Please visit Spotlight on Autoimmune Disease located under "Labels" to view links and information about Celiac Disease, an Autoimmune Disease that affects the digestive system. To get to this post, you can also click on the above title.
New Feature: Stories of Others
Since I'm on the internet quite often, I find stories from people who have encountered some difficult circumstances. In fact, my email is set to alert me to certain topics as they appear on the internet. How cool is that little gadget!
This particular post will feature stories from people who have disorders such as Autoimmune disorders and Dystonia. I will also include stories of people who may have other struggles that they are dealing with.
These stories are not meant to sadden. They are meant to bring awareness and to offer inspiration and hope. I believe that it is good to share stories. You never know who might be going through something similar...And you never know who you might help by sharing your journey.
So, please check back periodically to view new stories that have been brought to my attention.
**Please note that these stories will not be altered in any way (i.e. grammatically, content, etc.). They will appear as they were written by the author.
The story of a beauty queen stricken with Dystonia:
http://www.enctoday.com/news/beauty-64570-jdn-message-queen.html.
The story of a person with Grave's Disease:
http://gravesandglutengirl.wordpress.com/2009/07/23/51/
http://www.eastvalleytribune.com/story/146531
Lupus not slowing Gilbert ASU freshman
Friday, July 24, 2009
This morning I viewed a post on My World According to Lupus (You can connect to this blog; it appears on the right of my blog under "Blogs." Lupus Girl discusses how stress can help to trigger sympoms in people who have chronic illnesses. She also mentions some other very important things in relation to chronic illness.
Anyway, I have been feeling a bit frustrated lately. Sometimes, I feel very misunderstood. Perhaps, I do expect too much of people sometimes. My sister once told me that. And, when your expectations are not met, sometimes that does hurt. It might not be right...But, that is how I feel.
After reading the above blog this morning, it was ironic that the writer hit on many of the things I am feeling right now. So, I ended up venting on Lupus Girl's blog. Thanks Lupus Girl for allowing me to vent. I needed it. God Bless!
Here is what I wrote:
OMG--Alot of what you are talking about, I plan to discuss soon on my blog because I am feeling some of these things like right now.
I know the power of stress and it isn't good when you have chronic health issues. But, currently I am not under too much stress...some, but not too much.
What hit me most is your mention of how others don't get it. I often experience this, because my sometimes "invisible illness" is quite painful even when others can't see my symptoms.
I really need to work on myself in that respect and know that I can't necessarily expect others to understand all of the time (even though I would).
I must remember that no one is perfect. Although I know I have other faults, I happen to be empathetic and not everyone is empathetic to the same degree. I have to accept that and not let it bother me. I am working on it.
And the part about the doctors saying well "that" couldn't be a trigger. Yes, I want to scream, "Certain foods, stress, medications, certain activities, etc. can be a trigger--Duh!" I am so sick of doctors making statements that they cannot fully back up. I'd rather they just said nothing instead of making incorrect blanket statements.
With all of that being said, "Lord, I am grateful for the support I do get. I do have many supportive people in my life." I just needed to get out my frustrations--that's all.
Anyway, I have been feeling a bit frustrated lately. Sometimes, I feel very misunderstood. Perhaps, I do expect too much of people sometimes. My sister once told me that. And, when your expectations are not met, sometimes that does hurt. It might not be right...But, that is how I feel.
After reading the above blog this morning, it was ironic that the writer hit on many of the things I am feeling right now. So, I ended up venting on Lupus Girl's blog. Thanks Lupus Girl for allowing me to vent. I needed it. God Bless!
Here is what I wrote:
OMG--Alot of what you are talking about, I plan to discuss soon on my blog because I am feeling some of these things like right now.
I know the power of stress and it isn't good when you have chronic health issues. But, currently I am not under too much stress...some, but not too much.
What hit me most is your mention of how others don't get it. I often experience this, because my sometimes "invisible illness" is quite painful even when others can't see my symptoms.
I really need to work on myself in that respect and know that I can't necessarily expect others to understand all of the time (even though I would).
I must remember that no one is perfect. Although I know I have other faults, I happen to be empathetic and not everyone is empathetic to the same degree. I have to accept that and not let it bother me. I am working on it.
And the part about the doctors saying well "that" couldn't be a trigger. Yes, I want to scream, "Certain foods, stress, medications, certain activities, etc. can be a trigger--Duh!" I am so sick of doctors making statements that they cannot fully back up. I'd rather they just said nothing instead of making incorrect blanket statements.
With all of that being said, "Lord, I am grateful for the support I do get. I do have many supportive people in my life." I just needed to get out my frustrations--that's all.
Tuesday, July 21, 2009
Publicity for Dystonia
Let's Be Heard!
The following was posted by a member of WEGO Health, a health advocacy site that I have joined. For those suffering with Dystonia AND for those who receive Botox injections for the Dystonia, please get on the bandwagon and make a call. More publicity about this disorder will potentially mean more services and awareness by others.
"I just called and spoke with a representative from http://www.allergan.com/ and I mentioned that I heard about a new spokesperson for Allergan and wondered why they don't talk about Dystonia since there are about 300,000 in North America alone with some form of Dystonia. David the rep said he agrees that Dystonia should also be added to the campaign. He wants me to call the Marketing Dept. at 800-347-4500. He said if a bunch of us call asking this question, we would have a good shot towards marketing for Dystonia. Please let me know your thoughts before I call the marketing dept. Is this worth a shot?"
(The above was a comment made on WEGO Health)
I called today and left a message for someone in the Marketing Department. Even if you do not get Botox injections, it would be good to call anyway. If this product can potentially offer publicity for our disorder, then we need to call. "There is power in numbers!"
► Reply to This
The following was posted by a member of WEGO Health, a health advocacy site that I have joined. For those suffering with Dystonia AND for those who receive Botox injections for the Dystonia, please get on the bandwagon and make a call. More publicity about this disorder will potentially mean more services and awareness by others.
"I just called and spoke with a representative from http://www.allergan.com/ and I mentioned that I heard about a new spokesperson for Allergan and wondered why they don't talk about Dystonia since there are about 300,000 in North America alone with some form of Dystonia. David the rep said he agrees that Dystonia should also be added to the campaign. He wants me to call the Marketing Dept. at 800-347-4500. He said if a bunch of us call asking this question, we would have a good shot towards marketing for Dystonia. Please let me know your thoughts before I call the marketing dept. Is this worth a shot?"
(The above was a comment made on WEGO Health)
I called today and left a message for someone in the Marketing Department. Even if you do not get Botox injections, it would be good to call anyway. If this product can potentially offer publicity for our disorder, then we need to call. "There is power in numbers!"
► Reply to This
Articles About Vitamin D Deficiency: Who Knows What to Believe?
I have been told that I am Vitamin D Deficient. So, I have been prescribed Vitamin D supplementation. Lately, I've been seeing articles stating that Vitamin D supplementation might be a problem for people with Autoimmune Disease.
The first article discusses the dangers of Vitamin D Deficiency. The second article discusses potential problems for people with Autoimmune Disease who take Vitamin D. I have no idea whether to continue taking Vitamin D or not. My levels are now within the normal range with supplementation. I guess, I'll just continue to take Vitamin D in moderation...
Article: Harmful Vitamin D Deficiency Common Around the Word
http://www.voanews.com/english/Science/2009-07-20-voa47.cfm
Article: Vitamin D May Exacerbate Autoimmune Disease
http://www.eurekalert.org/pub_releases/2009-04/arf-vdm040809.php
The first article discusses the dangers of Vitamin D Deficiency. The second article discusses potential problems for people with Autoimmune Disease who take Vitamin D. I have no idea whether to continue taking Vitamin D or not. My levels are now within the normal range with supplementation. I guess, I'll just continue to take Vitamin D in moderation...
Article: Harmful Vitamin D Deficiency Common Around the Word
http://www.voanews.com/english/Science/2009-07-20-voa47.cfm
Article: Vitamin D May Exacerbate Autoimmune Disease
http://www.eurekalert.org/pub_releases/2009-04/arf-vdm040809.php
Friday, July 17, 2009
Update: Wal-Mart Fiasco
This week, I mailed my letter to the CEO of Wal-Mart, Mike Duke. I also mailed a copy of the letter to the store manager of the Wal-Mart in which the unfortunate incident took place.
I feel that I am speaking up for myself as well as for others who have "invisible" illnesses and/or overt disabilities.
I made it clear that the Wal-Mart greeter has no right to judge whether or not someone needs to use a scooter. I also made it clear that Wal-Mart should discuss this type of situation during their "sensitivity" training.
I further explained that employees of Wal-Mart (and employees of other public places for that matter) must be careful in how they treat customers with disabilties, because there are potential legal ramifications for discrimination/harassmant.
Hopefully, I will receive a nice apology letter. At the very least, hopefully someone in H.R. will be responsible for paying closer attention to matters of sensitivity.
I feel that I am speaking up for myself as well as for others who have "invisible" illnesses and/or overt disabilities.
I made it clear that the Wal-Mart greeter has no right to judge whether or not someone needs to use a scooter. I also made it clear that Wal-Mart should discuss this type of situation during their "sensitivity" training.
I further explained that employees of Wal-Mart (and employees of other public places for that matter) must be careful in how they treat customers with disabilties, because there are potential legal ramifications for discrimination/harassmant.
Hopefully, I will receive a nice apology letter. At the very least, hopefully someone in H.R. will be responsible for paying closer attention to matters of sensitivity.
Follow-up Appointment with my Allergist
In May, I had a follow-up appointment with my allergist. In February of this year, I decided to have a food allergy test and a scratch test done to determine any allergies. I felt this might be necessary based on reading articles/books that pointed me in the direction that food allergies could contribute to Autoimmune Disorders as well as other conditions/illnesses.
The scratch test revealed that I had allergies to items such as Dust Mites and grass. That was no big surprise. The food allergy test revealed a sensitivity to 14 foods. I wasn't that surprised, because I figured that I had Leaky Gut Syndrome, and food sensitivities are quite common in people with LGS.
So, I was told to stop eating those foods (i.e. dairy, Salmon, corn, etc.) for six months. When I went for my follow-up appointment in May, the doctor was nice enough to go ahead and retest me for food sensitivities instead of having me wait to be retested in September. I was happy, because I have been very hungry due to my limited diet.
The results showed that my IGE levels went down on all foods. So, he told me to gradually introduce dairy and corn into my diet. Then, he said that we would focus on introducing the other items when I visit his office in September.
My allergists said that he would actually have me do a challenge test in the office for items such as nuts, because they can be potentially dangerous for people who have allergies/sensitivities. I appreciate his caution.
I also asked the doctor to do a test that would test me for Celiac Disease and Gluten Sensitivity. Luckily, the test came back negative. But, I have read that a negative test does not necessarily mean that you do not have a sensitivity to Gluten.
The doctor also clarified a few things for me. The test that was given to me was an IGE test. The results are based on a numerical range. The results of my test showed that most of my levels were at a 2. For Dairy and mushrooms, my IGE levels were a 3.
My doctor told me that a level of 2 or higher is reason for concern. I asked him what could have happened if I had not come in to get this test? He said that if my increasing numbers had reached a 6, I could have been at risk for Anaphylactic Shock. I had read/heard stories about Anaphylactic Shock--a severe reaction-- in people who were allergic to peanuts but ingested peanuts.
I am blessed that I was lead to have an allergy test. I simply wanted the food allergy test because of my intestinal issues and the belief that food sensitivities/allergies can make you sicker. I did not realize that I was at risk for potentially developing a severe, life-threatening reaction to certain foods. I truly learn something new everyday.
My doctor also informed me that if I develop food sensitivities again, I may have to go through the elimination of foods once more. He said that patients with my issue (food sensitivities) usually have to undergo this type of diet restriction no more than twice. Hopefully, I won't have to go through that again!
In my upcoming "What Have I Been Doing Lately?" posts, I will discuss my follow-up appointments with my Integrative Doctor and Gastroenterologist.
The scratch test revealed that I had allergies to items such as Dust Mites and grass. That was no big surprise. The food allergy test revealed a sensitivity to 14 foods. I wasn't that surprised, because I figured that I had Leaky Gut Syndrome, and food sensitivities are quite common in people with LGS.
So, I was told to stop eating those foods (i.e. dairy, Salmon, corn, etc.) for six months. When I went for my follow-up appointment in May, the doctor was nice enough to go ahead and retest me for food sensitivities instead of having me wait to be retested in September. I was happy, because I have been very hungry due to my limited diet.
The results showed that my IGE levels went down on all foods. So, he told me to gradually introduce dairy and corn into my diet. Then, he said that we would focus on introducing the other items when I visit his office in September.
My allergists said that he would actually have me do a challenge test in the office for items such as nuts, because they can be potentially dangerous for people who have allergies/sensitivities. I appreciate his caution.
I also asked the doctor to do a test that would test me for Celiac Disease and Gluten Sensitivity. Luckily, the test came back negative. But, I have read that a negative test does not necessarily mean that you do not have a sensitivity to Gluten.
The doctor also clarified a few things for me. The test that was given to me was an IGE test. The results are based on a numerical range. The results of my test showed that most of my levels were at a 2. For Dairy and mushrooms, my IGE levels were a 3.
My doctor told me that a level of 2 or higher is reason for concern. I asked him what could have happened if I had not come in to get this test? He said that if my increasing numbers had reached a 6, I could have been at risk for Anaphylactic Shock. I had read/heard stories about Anaphylactic Shock--a severe reaction-- in people who were allergic to peanuts but ingested peanuts.
I am blessed that I was lead to have an allergy test. I simply wanted the food allergy test because of my intestinal issues and the belief that food sensitivities/allergies can make you sicker. I did not realize that I was at risk for potentially developing a severe, life-threatening reaction to certain foods. I truly learn something new everyday.
My doctor also informed me that if I develop food sensitivities again, I may have to go through the elimination of foods once more. He said that patients with my issue (food sensitivities) usually have to undergo this type of diet restriction no more than twice. Hopefully, I won't have to go through that again!
In my upcoming "What Have I Been Doing Lately?" posts, I will discuss my follow-up appointments with my Integrative Doctor and Gastroenterologist.
What Have I Been Doing Lately: A New Section in My Blog
I am starting a "What Have I Been Doing Lately?" section. I am not done writing the "My Story" section. I did not realize how long "My Story" would take. I will keep writing, but sometimes I take a break.
"What Have I Been Doing Lately?" will focus on more up-to- date information about my health related issues. For example, if I go to the doctor, I may write about that visit.
Please keep reading "My Story" and the other posts. To keep up with my posts, it may be best to follow the "Labels" section which is to the right of this blog.
Once again, thanks for reading this blog. It is therapeutic for me to write, and I hope I'm helping someone in the process! Your comments also mean a lot. They let me know that others are reading this blog...and that keeps me motivated to keep on writing.
God Bless!
"What Have I Been Doing Lately?" will focus on more up-to- date information about my health related issues. For example, if I go to the doctor, I may write about that visit.
Please keep reading "My Story" and the other posts. To keep up with my posts, it may be best to follow the "Labels" section which is to the right of this blog.
Once again, thanks for reading this blog. It is therapeutic for me to write, and I hope I'm helping someone in the process! Your comments also mean a lot. They let me know that others are reading this blog...and that keeps me motivated to keep on writing.
God Bless!
Sunday, July 5, 2009
Spotlight on Autoimmune Disease
Spotlight on Autoimmune Diseases
In this post, I will continuously list websites/sources that explain and shed light on various Autoimmune Diseases. With all Autoimmune Diseases, the body "attacks itself." Another common feature of Autoimmune Disease is inflammation in the body. While all Autoimmune Diseases have many common symptoms, each individual Autoimmune Disease has its own unique set of symptoms and related issues.
Vitilago-An Autoimmune Disease that causes the complete loss of brown pigment in the skin.
http://www.examiner.com/x-7153-Des-Moines-Health-and-Beauty-Examiner~y2009m7d4-Vitiligo-Michael-Jacksons-skin-disease
Celiac Disease- Celiac Disease is a digestive disorder that affects people when they ingest gluten (wheat, rye, barley, etc.).
http://www.celiac.org/cd-main.php
http://www.scientificamerican.com/article.cfm?id=celiac-disease-insights
http://www.glutenfreehub.com/
Thursday, July 2, 2009
Video of Note: CrazySexyCancer
I just watched CrazySexyCancer, a documentary style film by Kris Carr. I had become familiar with Kris Carr when she appeared on The Oprah Winfrey Show a few years ago. Oprah Winfrey has had such inspirational shows over the past few years. I really appreciate her bringing awareness to many issues and resources. Go Oprah!
The cover of the DVD states, "Diagnosed with a rare, incurable cancer, 31 year-old actress/photographer Kris Carr exits her career and dives head-first into an epic journey, becoming a 'full-time healing junkie.' What follows is a four year adventure of mind, body and heart as Kris explores a colorful variety of treatments, both east and west. Along the way she meets four other survivors, her posse of soul-sisters, who refuse to be defined by the big "C." Hip and humorous, intimate and empowering, this cutting-edge documentary shatters old stigmas with a force of spirit, redefining what it means to truly live-not just for those struggling with cancer, but for anyone who needs a personal revolution."
While I'm thankfully not battling the big "C" like Carr, I can relate to her story on many levels. In the face of being told that her illness is incurable, Carr is trying many approaches that would be "alternative" in the eyes of traditional medicine. But, what choice does she have? Either fight or give up. I'm with her--you're better off fighting.
Carr's story is very inspirational. Carr is a cute, little blonde who still has a zest for life. I am truly encouraged by her determination and discipline. She let's the viewers know that her struggle hasn't been easy...But I don't see her giving up anytime soon.
I hope Carr will continue to do well. I pray for her health and continued piece of mind.
Below is a link to Carr's website:
http://crazysexylife.com/
View Carr on The Oprah Winfrey Show:
http://www.youtube.com/watch?v=tbRM2RAjgh0
The cover of the DVD states, "Diagnosed with a rare, incurable cancer, 31 year-old actress/photographer Kris Carr exits her career and dives head-first into an epic journey, becoming a 'full-time healing junkie.' What follows is a four year adventure of mind, body and heart as Kris explores a colorful variety of treatments, both east and west. Along the way she meets four other survivors, her posse of soul-sisters, who refuse to be defined by the big "C." Hip and humorous, intimate and empowering, this cutting-edge documentary shatters old stigmas with a force of spirit, redefining what it means to truly live-not just for those struggling with cancer, but for anyone who needs a personal revolution."
While I'm thankfully not battling the big "C" like Carr, I can relate to her story on many levels. In the face of being told that her illness is incurable, Carr is trying many approaches that would be "alternative" in the eyes of traditional medicine. But, what choice does she have? Either fight or give up. I'm with her--you're better off fighting.
Carr's story is very inspirational. Carr is a cute, little blonde who still has a zest for life. I am truly encouraged by her determination and discipline. She let's the viewers know that her struggle hasn't been easy...But I don't see her giving up anytime soon.
I hope Carr will continue to do well. I pray for her health and continued piece of mind.
Below is a link to Carr's website:
http://crazysexylife.com/
View Carr on The Oprah Winfrey Show:
http://www.youtube.com/watch?v=tbRM2RAjgh0
Fiasco at WalMart: "Why Do You Need to Use a Scooter?"
Last summer, I had just been diagnosed with Dystonia (neurological disorder that causes pain/spasms in my neck and back). I was in the beginning of my treatment and frequently in severe pain. So, I did not go out that much. Now, I am in some type of pain daily, but the range is mild to semi-severe. The botox injections I get (supposed to get them every three months), have helped me to function better. Now, I have more better days. So, now I get out a little bit more.
On Tuesday, I was the victim of what I guess I would call "reverse discrimination." I went to WalMart with a friend who has MS. Often, she uses the scooters when she visits stores. That day, my neck and back were on fire (caused by Dystonic spasms). So, my friend encouraged me to use a scooter.
To be quite honest, I am still very self-conscious about my illness. I worry about my head shaking, the stiffness of my neck, etc. Often, when I go out in public, I am already a bit uncomfortable--especially if I'm having a very "symptomatic" day. I'm working on not caring about what others think. Fundamentally, I know that I shouldn't care. But, it's been a struggle. Some people can be very cruel and uncaring.
With all of that being said, although I decided to use the scooter, I knew that I would be a bit self conscious while riding throughout the store. Although I am in pain frequently, my symptoms are not always obvious. I feel the pain/spasms, but my issues can often be "invisible" to the naked eye. Plus, I work hard to look as normal as possible (that can be exhausting--trying to hold your neck straight when it wants to pull to the right).
Once I decided to use the scooter, I made a the comment, "I hope no one says something about my being on the scooter." I did not want to deal with any drama. Perhaps I should have kept my mouth shut. "Why did I have to go and say that?"
My friend gave the perfect answer "It's not any one's business. You need it. So, use it." She was right, I decided. So, she chose one scooter and I chose the other scooter that was available.
My friend got on her scooter and it started with no problems. I was lucky enough to get the scooter that did not work properly. I got on and nothing. So, my friend asked the Walmart Greeter to help us. Like at most WalMart Stores, the greeter was an elderly lady. Once my friend summoned her for help, she came right over. I was sitting on the "dead" scooter.
The greeter's first words were "What's wrong?" Already on defense, I knew what she was referring to...and it wasn't the scooter. My friend assumed that the greeter was referring to the scooter. Nope. Her reply was, "What's wrong with her?"
I should have ignored her, but I responded to her question. I said, "Apparently, I need this scooter because of an issue that I have." So, she fiddled with the scooter to try and get it to work. While trying to get the scooter to work, she made several more inappropriate comments including, "You look too young," "You look like a teenager," "I could get in trouble if you're on the scooter, because people who are crippled need the scooters." She kept on and on.
I got angry. I didn't curse (I was proud of myself) or yell. I probably gave her more respect than she deserved, because she was elderly. But, I told her "You never know what someone is going through." I even told her that I had a neurological disorder that caused bouts of pain. But, she kept making remarks. My friend stopped me from responding to this woman by reminding me that I did not owe her an explanation. After I told the lady how her comments were very inappropriate, she walked away.
Emotionally distressed and embarrassed by what should have been very simple and uneventful, I wanted to speak to a manager. My friend summoned a manager. The manager came over to the scooter area. We explained what had happened with the Walmart Greeter. The manager was very apologetic and kind. She said that anyone could use the scooters without question and that she had been on the scooter several weeks ago, because of a broken leg. She helped us to get the scooter working properly. As we were pulling off in the scooters, I saw the manager approach the greeter. I could tell by the greeter's body language that she was fiercely trying to defend herself. She didn't look too happy . I could tell that the manager had been firm with her. That was a good thing.
Shortly after our departure, the scooter stopped in the front of an aisle. I was still hurt and frustrated and in pain. As we were sitting there, looking for help, my emotions surfaced. The frustration, the embarrassment, and the underlying pain came to a head. I sat there and cried. I couldn't hold it back. Those tears had probably been there all day. The Walmart incident just unleashed the floodgates. My friend was very understanding--she's been there, emotionally.
I decided to notify the manager that the scooter had stopped in aisle (?). She told me that another scooter had been returned by a customer. I thanked her, but I decided to sit in the car. I had had enough for the day. I got in the car and called my Mother. I told her about the WalMart incident--I needed to talk and get it off of my chest. She felt my pain and tears. She wanted to make it right. She asked, "Did you get her name?" Through all of the turmoil, I did not get the greeter's name. Later, once my friend came out of the store, I learned that she had gotten the manager's name and the greeter's name. I guess she had looked at their name tags. "That's pretty good," I thought.
Perhaps, I will write a letter to WalMart. I feel that it's my duty to bring this to the attention of the WalMart headquarters. I'm sure this type of incident happens all of the time and it will continue to happen. Unfortunately, discrimination occurs everyday and in many forms. But, I can tell my story. There needs to be more sensitivity in the world. Just because someone doesn't look ill, it doesn't mean that they are not ill. There are people walking around with cancer, as my Mother reminds me, who look perfectly fine. Just because you look young, it doesn't mean you are "young." Besides, unfortunately, young people get sick too. Illness has no age. So, wheelchairs and scooters aren't reserved for the elderly or the obviously maimed. Others need them too!
What the greeter did not know is that I am 36 years old. While I'm not old, I am certainly not a teenager. In the past, I have gotten into an altercation with someone, because they thought I was a teenager (A few years ago, I was at a swimming pool with my nephews and this nosy lady thought I was a kid and started questioning me, because I wasn't with an "adult." I often say, that even with my physical ailments, the Lord has blessed me with looking young for my age. Even though I've had a few incidents because of the blessing, I do hope that I continue to receive that blessing!
What would I say to the Walmart Greeter? I would tell her that she needs to be more sensitive. I understand that we have a few people who might abuse the system (i.e. park in handicapped parking spots when they are not handicapped). Obviously, this type of behavior makes it bad for those who need these services. However, you CANNOT judge others just by their appearance--that's called discrimination.
On Tuesday, I was the victim of what I guess I would call "reverse discrimination." I went to WalMart with a friend who has MS. Often, she uses the scooters when she visits stores. That day, my neck and back were on fire (caused by Dystonic spasms). So, my friend encouraged me to use a scooter.
To be quite honest, I am still very self-conscious about my illness. I worry about my head shaking, the stiffness of my neck, etc. Often, when I go out in public, I am already a bit uncomfortable--especially if I'm having a very "symptomatic" day. I'm working on not caring about what others think. Fundamentally, I know that I shouldn't care. But, it's been a struggle. Some people can be very cruel and uncaring.
With all of that being said, although I decided to use the scooter, I knew that I would be a bit self conscious while riding throughout the store. Although I am in pain frequently, my symptoms are not always obvious. I feel the pain/spasms, but my issues can often be "invisible" to the naked eye. Plus, I work hard to look as normal as possible (that can be exhausting--trying to hold your neck straight when it wants to pull to the right).
Once I decided to use the scooter, I made a the comment, "I hope no one says something about my being on the scooter." I did not want to deal with any drama. Perhaps I should have kept my mouth shut. "Why did I have to go and say that?"
My friend gave the perfect answer "It's not any one's business. You need it. So, use it." She was right, I decided. So, she chose one scooter and I chose the other scooter that was available.
My friend got on her scooter and it started with no problems. I was lucky enough to get the scooter that did not work properly. I got on and nothing. So, my friend asked the Walmart Greeter to help us. Like at most WalMart Stores, the greeter was an elderly lady. Once my friend summoned her for help, she came right over. I was sitting on the "dead" scooter.
The greeter's first words were "What's wrong?" Already on defense, I knew what she was referring to...and it wasn't the scooter. My friend assumed that the greeter was referring to the scooter. Nope. Her reply was, "What's wrong with her?"
I should have ignored her, but I responded to her question. I said, "Apparently, I need this scooter because of an issue that I have." So, she fiddled with the scooter to try and get it to work. While trying to get the scooter to work, she made several more inappropriate comments including, "You look too young," "You look like a teenager," "I could get in trouble if you're on the scooter, because people who are crippled need the scooters." She kept on and on.
I got angry. I didn't curse (I was proud of myself) or yell. I probably gave her more respect than she deserved, because she was elderly. But, I told her "You never know what someone is going through." I even told her that I had a neurological disorder that caused bouts of pain. But, she kept making remarks. My friend stopped me from responding to this woman by reminding me that I did not owe her an explanation. After I told the lady how her comments were very inappropriate, she walked away.
Emotionally distressed and embarrassed by what should have been very simple and uneventful, I wanted to speak to a manager. My friend summoned a manager. The manager came over to the scooter area. We explained what had happened with the Walmart Greeter. The manager was very apologetic and kind. She said that anyone could use the scooters without question and that she had been on the scooter several weeks ago, because of a broken leg. She helped us to get the scooter working properly. As we were pulling off in the scooters, I saw the manager approach the greeter. I could tell by the greeter's body language that she was fiercely trying to defend herself. She didn't look too happy . I could tell that the manager had been firm with her. That was a good thing.
Shortly after our departure, the scooter stopped in the front of an aisle. I was still hurt and frustrated and in pain. As we were sitting there, looking for help, my emotions surfaced. The frustration, the embarrassment, and the underlying pain came to a head. I sat there and cried. I couldn't hold it back. Those tears had probably been there all day. The Walmart incident just unleashed the floodgates. My friend was very understanding--she's been there, emotionally.
I decided to notify the manager that the scooter had stopped in aisle (?). She told me that another scooter had been returned by a customer. I thanked her, but I decided to sit in the car. I had had enough for the day. I got in the car and called my Mother. I told her about the WalMart incident--I needed to talk and get it off of my chest. She felt my pain and tears. She wanted to make it right. She asked, "Did you get her name?" Through all of the turmoil, I did not get the greeter's name. Later, once my friend came out of the store, I learned that she had gotten the manager's name and the greeter's name. I guess she had looked at their name tags. "That's pretty good," I thought.
Perhaps, I will write a letter to WalMart. I feel that it's my duty to bring this to the attention of the WalMart headquarters. I'm sure this type of incident happens all of the time and it will continue to happen. Unfortunately, discrimination occurs everyday and in many forms. But, I can tell my story. There needs to be more sensitivity in the world. Just because someone doesn't look ill, it doesn't mean that they are not ill. There are people walking around with cancer, as my Mother reminds me, who look perfectly fine. Just because you look young, it doesn't mean you are "young." Besides, unfortunately, young people get sick too. Illness has no age. So, wheelchairs and scooters aren't reserved for the elderly or the obviously maimed. Others need them too!
What the greeter did not know is that I am 36 years old. While I'm not old, I am certainly not a teenager. In the past, I have gotten into an altercation with someone, because they thought I was a teenager (A few years ago, I was at a swimming pool with my nephews and this nosy lady thought I was a kid and started questioning me, because I wasn't with an "adult." I often say, that even with my physical ailments, the Lord has blessed me with looking young for my age. Even though I've had a few incidents because of the blessing, I do hope that I continue to receive that blessing!
What would I say to the Walmart Greeter? I would tell her that she needs to be more sensitive. I understand that we have a few people who might abuse the system (i.e. park in handicapped parking spots when they are not handicapped). Obviously, this type of behavior makes it bad for those who need these services. However, you CANNOT judge others just by their appearance--that's called discrimination.
Thursday, June 25, 2009
My Story: Part Eight (Desperate for Help)
In the last post, I discussed how I ended up taking a leave of absence, because I was getting sicker and sicker. This post covers my experiences from February 2008 to March 2008.
So, I left work in February. When I left, I thought it would be only temporary--until I could figure out what was going on. Was it not enough thyroid hormone replacement? Was it too much Thyroid Hormone Replacement? Was it the combination of drugs that have been in my system? To this day, I have my theories, but no answers. My questions may never be answered by doctors. Sometimes, although I have been diagnosed with various illnesses, I sometimes collectively refer to my conditions as Environmental Illness, because I feel that various toxicities helped to contribute to the break down of my neurological system and my immune system.
In continuation, I was so desperate to get some answers that I consulted a doctor that I found on the Internet who had an office about 45 minutes away from me. The doctor was a Chiropractor who claimed to have extensive knowledge regarding the Thyroid and Thyroid issues. Yes, I was leery, because he was a Chiropractor, but he had listed many other certifications. When I called, I was in tears, because I felt so ill. The secretary assured me that he would be able to help. She was very kind.
On my first visit, the Doctor was very encouraging. He ordered numerous tests including a stool test, blood test, and a hair analysis. He agreed that the "traditional" doctors don't do much in terms of treatment for people with Thyroid issues. He also put me on a detox diet in which I could only eat fruit, vegetables, and some meat. Usually, there is no meat involved in the detox diet he prescribes, but my weight is so low already that I was allowed to eat meat. I was put on green food tablets, a protein shake, fish oil, and a few other things. I was on this diet for about a month or two. I remember not being able to eat my usual Easter Dinner because of the diet--that hurt. On this diet, I continued to suffer from constipation. I was told to take something called Turkey Rhubarb and to drink more water. Well, I was drinking a lot of water, and the Turkey Rhubarb made my stomach hurt.
On the next visit, his nurse went over the results of the tests. There was a lot covered. I will discuss some of the more important points. I was told that I suffered from Adrenal Exhaustion. I was told that I had food sensitivities to milk, soy, and eggs. My cholesterol was a bit high as usual (common in patients with Thyroid issues). I was also told that I had a high level of some metals such as lead and cadmium in my system. The tests showed that I had a very low amount of digestive enzymes, a high amount of bacteria in my stomach, various stomach infections such as toxoplasmosis and several others. Some of these results could explain my elimination issues and inability to gain weight.
I now know that this doctor was on the right path as far as some things. I believe the results of the blood tests and the stool tests, because the lab that processed the tests is a reputable lab. I'm leery about some of the results that were received through the hair analysis. Some items have been confirmed by other doctors and/or second opinions. For example, even more food
intolerances were eventually confirmed by a blood test ordered by my allergist. The stomach bacteria was confirmed by a test done by my gastroenterologist. And, I have a history of mineral and vitamin deficiencies. In terms of the metals, I had a blood test done by another doctor who specializes in Environmental Issues. This test showed that the level of metals were not elevated, but I have read several sources that say that Hair Analysis is the best way to measure metals in the body. So, perhaps the doctor's test were accurate for the most part.
However, some of the doctor's practices did not sit well with me. For example, his test showed that I had an intolerance to soy, eggs, and dairy. But, as part of my detox diet, the doctor had given me a protein shake to take three times a day that contained milk and soy and I had been eating eggs during my diet. The test that showed food intolerances did not come back until after I had finished the detox. So, I had been ingesting lots of soy, eggs, and dairy for two months. The test should have been done before telling me to take the protein shake. Ingesting a large amount of the soy, milk, and eggs could have potentially wreaked even more havoc on my intestines, and have caused me to be more ill.
The doctor did not seem interested in treating my Graves' Disease and Thyroid issues, although that was my major concern. It seemed like all he did was throw supplements at me (i.e. Chelation pills to remove heavy metals, cream for Adrenal Fatigue, enzymes, etc.).
The real disappointment was that he acted like he would address my thyroid issues. He even told me there was a medical doctor in his office who could prescribe Thyroid Hormone Replacement. That turned out to be a lie.
At the doctor's suggestion, I bought a bottle of supplements that he gave to his Parkinson's patients. Although, I still shake, at that time, I was shaking as if I could have had Parkinson's Diseases. I bought the expensive supplements. But, I decided not to take them--out of fear. After all, he hadn't done any test on me to justify me taking pills that he gives to Parkinson's patients.
When I asked this doctor if it was possible that I had been given to much Thyroid Hormone Replacement (I was bouncing off of the walls), he performed some ridiculous kinesiology test that would test for weakness/intolerance. The doctor had me hold my pill in one hand. Then he had me hold my mother's hand. Then, he held her hand. After doing that, he said the medicine was okay for my system, because he didn't feel any weakness in my mother's hand. Now doesn't that sound ridiculous? It did to me. That was the straw that broke the camel's back. It was after that, I decided I would no longer be his patient. While some people believe in kinesiology, I do not believe in the method he used. I would eventually find out that I was taking too much Thyroid Hormone Supplement. So, his "measurement" technique was ridiculous in deed.
Even if he would have discussed why it was necessary to take all of the supplements in order to...But, it was just "take all of these." I asked questions, but got no clear plan of action as to where he was going with all of it. I spent a lot of money on the supplements and visits to his office and insurance did not cover this type of treatment. I was very disappointed about being so encouraged that he could help me and then realizing that he probably would not be the one to help me. But after prayer and discussing the situation with others, I am just grateful that I did decide to stop seeing this doctor.
Even though I feel duped by this doctor in many ways, I feel blessed that his tests opened my eyes up to some things. The test results led me to investigate my intestinal issues. The results led me to further investigate food intolerances. While I feel he was a snake oil salesman in a sense, it was a necessary part of my path. I am still searching for help and answers. This was to be a part of that puzzle.
My dream doctor: A doctor who is knowledgeable medical doctor with an equal amount of knowledge in Naturopathic Medicine. I'm still searching...
The next "My Story" will discuss how an internist sent me to a Neurologist.
So, I left work in February. When I left, I thought it would be only temporary--until I could figure out what was going on. Was it not enough thyroid hormone replacement? Was it too much Thyroid Hormone Replacement? Was it the combination of drugs that have been in my system? To this day, I have my theories, but no answers. My questions may never be answered by doctors. Sometimes, although I have been diagnosed with various illnesses, I sometimes collectively refer to my conditions as Environmental Illness, because I feel that various toxicities helped to contribute to the break down of my neurological system and my immune system.
In continuation, I was so desperate to get some answers that I consulted a doctor that I found on the Internet who had an office about 45 minutes away from me. The doctor was a Chiropractor who claimed to have extensive knowledge regarding the Thyroid and Thyroid issues. Yes, I was leery, because he was a Chiropractor, but he had listed many other certifications. When I called, I was in tears, because I felt so ill. The secretary assured me that he would be able to help. She was very kind.
On my first visit, the Doctor was very encouraging. He ordered numerous tests including a stool test, blood test, and a hair analysis. He agreed that the "traditional" doctors don't do much in terms of treatment for people with Thyroid issues. He also put me on a detox diet in which I could only eat fruit, vegetables, and some meat. Usually, there is no meat involved in the detox diet he prescribes, but my weight is so low already that I was allowed to eat meat. I was put on green food tablets, a protein shake, fish oil, and a few other things. I was on this diet for about a month or two. I remember not being able to eat my usual Easter Dinner because of the diet--that hurt. On this diet, I continued to suffer from constipation. I was told to take something called Turkey Rhubarb and to drink more water. Well, I was drinking a lot of water, and the Turkey Rhubarb made my stomach hurt.
On the next visit, his nurse went over the results of the tests. There was a lot covered. I will discuss some of the more important points. I was told that I suffered from Adrenal Exhaustion. I was told that I had food sensitivities to milk, soy, and eggs. My cholesterol was a bit high as usual (common in patients with Thyroid issues). I was also told that I had a high level of some metals such as lead and cadmium in my system. The tests showed that I had a very low amount of digestive enzymes, a high amount of bacteria in my stomach, various stomach infections such as toxoplasmosis and several others. Some of these results could explain my elimination issues and inability to gain weight.
I now know that this doctor was on the right path as far as some things. I believe the results of the blood tests and the stool tests, because the lab that processed the tests is a reputable lab. I'm leery about some of the results that were received through the hair analysis. Some items have been confirmed by other doctors and/or second opinions. For example, even more food
intolerances were eventually confirmed by a blood test ordered by my allergist. The stomach bacteria was confirmed by a test done by my gastroenterologist. And, I have a history of mineral and vitamin deficiencies. In terms of the metals, I had a blood test done by another doctor who specializes in Environmental Issues. This test showed that the level of metals were not elevated, but I have read several sources that say that Hair Analysis is the best way to measure metals in the body. So, perhaps the doctor's test were accurate for the most part.
However, some of the doctor's practices did not sit well with me. For example, his test showed that I had an intolerance to soy, eggs, and dairy. But, as part of my detox diet, the doctor had given me a protein shake to take three times a day that contained milk and soy and I had been eating eggs during my diet. The test that showed food intolerances did not come back until after I had finished the detox. So, I had been ingesting lots of soy, eggs, and dairy for two months. The test should have been done before telling me to take the protein shake. Ingesting a large amount of the soy, milk, and eggs could have potentially wreaked even more havoc on my intestines, and have caused me to be more ill.
The doctor did not seem interested in treating my Graves' Disease and Thyroid issues, although that was my major concern. It seemed like all he did was throw supplements at me (i.e. Chelation pills to remove heavy metals, cream for Adrenal Fatigue, enzymes, etc.).
The real disappointment was that he acted like he would address my thyroid issues. He even told me there was a medical doctor in his office who could prescribe Thyroid Hormone Replacement. That turned out to be a lie.
At the doctor's suggestion, I bought a bottle of supplements that he gave to his Parkinson's patients. Although, I still shake, at that time, I was shaking as if I could have had Parkinson's Diseases. I bought the expensive supplements. But, I decided not to take them--out of fear. After all, he hadn't done any test on me to justify me taking pills that he gives to Parkinson's patients.
When I asked this doctor if it was possible that I had been given to much Thyroid Hormone Replacement (I was bouncing off of the walls), he performed some ridiculous kinesiology test that would test for weakness/intolerance. The doctor had me hold my pill in one hand. Then he had me hold my mother's hand. Then, he held her hand. After doing that, he said the medicine was okay for my system, because he didn't feel any weakness in my mother's hand. Now doesn't that sound ridiculous? It did to me. That was the straw that broke the camel's back. It was after that, I decided I would no longer be his patient. While some people believe in kinesiology, I do not believe in the method he used. I would eventually find out that I was taking too much Thyroid Hormone Supplement. So, his "measurement" technique was ridiculous in deed.
Even if he would have discussed why it was necessary to take all of the supplements in order to...But, it was just "take all of these." I asked questions, but got no clear plan of action as to where he was going with all of it. I spent a lot of money on the supplements and visits to his office and insurance did not cover this type of treatment. I was very disappointed about being so encouraged that he could help me and then realizing that he probably would not be the one to help me. But after prayer and discussing the situation with others, I am just grateful that I did decide to stop seeing this doctor.
Even though I feel duped by this doctor in many ways, I feel blessed that his tests opened my eyes up to some things. The test results led me to investigate my intestinal issues. The results led me to further investigate food intolerances. While I feel he was a snake oil salesman in a sense, it was a necessary part of my path. I am still searching for help and answers. This was to be a part of that puzzle.
My dream doctor: A doctor who is knowledgeable medical doctor with an equal amount of knowledge in Naturopathic Medicine. I'm still searching...
The next "My Story" will discuss how an internist sent me to a Neurologist.
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