After reading a Tweet that discussed clinical trials, I decided to, once again, visit http://clinicaltrials.gov/. On this site, you can find various clinical health trials that are being done.
So, I typed in Dystonia and Cervical Dystonia. There were quite a few listed trials. But, due to my internal sensitivities (i.e. sensitivities to meds, autoimmune issues, etc.), I'm not willing to participate in trials that involve receiving medications or trials that involve invasive procedures (naturally, most of the trials involved chemically invasive procedures).
However, I did find one, potential trial that discusses the usage of Botox to treat Cervical Dystonia. It doesn't appear that this trial requires anything besides observing my response to Botox injections. So, I emailed the group that is overseeing this study to ask some general questions. We'll see what I get back.
I also put in searches such as "Grave's Disease and Dystonia." The search gave me nothing. Online, I have come across quite a few people who have this combination--just as I do. So, this would make for an interesting investigation.
I would love to be part of a research study or investigation that would simply investigate my medical history in conjunction with the history of others who have incurable, hard-to-treat diorders/illnesses.
Studies that I would personally like to participate/offer information to would be studies involving: Cervical Dystonia, Grave's Disease, The effects of Synthroid in treating Hypothyroidism, The effects of Natural Thyroid Hormone in treating Hypothyroidism, Metabolism in relation to Grave's Disease, etc.
As I said, I don't want to be poked and prodded with injections. I just want to be an observation and/or an oral history research participant--so to speak. Maybe the researchers could learn a few things from hearing about my journey.
Researchers and scientists could learn a whole lot more if they, first, focused on the "listening" before trying to focus on the treatment or drug aspect of studies.
Sometimes, it's just best to ask questions and listen to the answers when trying to figure out something--in this case, when trying to figure out the best treatment options for various health conditions. This listening approach could possibly lead to more curative conclusions versus band aide treatments.
Who knows? Pending the right conditions, maybe I'll be a "lab rat" one day.
Showing posts with label Reflection/Opinion. Show all posts
Showing posts with label Reflection/Opinion. Show all posts
Sunday, November 22, 2009
Friday, November 20, 2009
In the News: New Breast Cancer Recommendations
This is what I have to say about the U.S. Preventative Services Task Force recommendations for breast cancer (other than they suck--LOL):
This week, there have been several recommendations in terms of Women’s Health. For starters, The U.S. Preventative Services Task Force—an independent panel of doctors and researchers—has issued recommendations as to when women should receive mammographies.
Prior to this recommendation, standard guidelines have suggested that a woman should receive an annual mammography, starting at the age of 40. In contradiction, The U.S. Preventative Services Task Force recommends that a woman has her first mammography at the age of 50 and every two years, thereafter.
If the recommendations of the task force were to ever be formally mandated, it would undoubtedly be at the cost of many lives. Kathleen Sebelius, The Secretary of Health and Human Services, has made it clear that women—in consultation with their doctors—should keep following the current mammography guidelines.
It is interesting—interesting indeed—that these recommendations have been made in the shadows of great health care debate. While Sebelius states that she can’t see insurance companies altering coverage of mammograms based on the recommendations of the task force, there is much cause for concern.
Increasingly, insurance companies have been barking about the costs associated with forking out money for tests and procedures that they deem unnecessary. These types of “scientific” recommendations could very well give insurance companies grounds for reducing coverage further and/or creating more stringent guidelines in terms of what they will or will not cover. It is for this reason that we must clearly voice our concerns and opinions. Things change, and these recommendations have planted seeds for negative change.
Unfortunately, we all know someone who has been diagnosed with cancer and/or has died from the disease. Many of us know someone who has been diagnosed with breast cancer, but they didn’t fit the typical breast cancer, patient composite—a woman diagnosed with breast cancer before the age of 40 or a man who has been diagnosed with breast cancer, for example.
Fortunately, the lives of many women have been saved by early detection through means of self breast exams and mammographies. One life saved is reason enough to support early detection and routine screenings.
If there were ever a time for socially conscious Americans to stand up in fight, this is that time. We must applaud all—including physicians and politicians—who have voiced a show of support against these potentially dangerous recommendations. A continued show of support for effective breast cancer guidelines will help to put these task force recommendations in the trash where they belong.
With all of this craziness going on, I then woke up this morning to hear that there are recommendations to change guidelines for the annual pap smear. What next? Hopefully, there won’t be anymore harmful recommendations in the near future!!!
For further reading, please review the following articles:
New Advice: Skip Mammograms in 40's start at 50
http://news.yahoo.com/s/ap/20091116/ap_on_he_me/us_med_mammogram_advice
US Mammogram Policy Will Not Change Says Health Secretary
http://www.medicalnewstoday.com/articles/171521.php
Pap Smear Guidelines: New recommendations call for tests every 2 years http://www.chicagotribune.com/health/chi-tc-nw-pap-smears-1119-1120nov20,0,6606495.story
This week, there have been several recommendations in terms of Women’s Health. For starters, The U.S. Preventative Services Task Force—an independent panel of doctors and researchers—has issued recommendations as to when women should receive mammographies.
Prior to this recommendation, standard guidelines have suggested that a woman should receive an annual mammography, starting at the age of 40. In contradiction, The U.S. Preventative Services Task Force recommends that a woman has her first mammography at the age of 50 and every two years, thereafter.
If the recommendations of the task force were to ever be formally mandated, it would undoubtedly be at the cost of many lives. Kathleen Sebelius, The Secretary of Health and Human Services, has made it clear that women—in consultation with their doctors—should keep following the current mammography guidelines.
It is interesting—interesting indeed—that these recommendations have been made in the shadows of great health care debate. While Sebelius states that she can’t see insurance companies altering coverage of mammograms based on the recommendations of the task force, there is much cause for concern.
Increasingly, insurance companies have been barking about the costs associated with forking out money for tests and procedures that they deem unnecessary. These types of “scientific” recommendations could very well give insurance companies grounds for reducing coverage further and/or creating more stringent guidelines in terms of what they will or will not cover. It is for this reason that we must clearly voice our concerns and opinions. Things change, and these recommendations have planted seeds for negative change.
Unfortunately, we all know someone who has been diagnosed with cancer and/or has died from the disease. Many of us know someone who has been diagnosed with breast cancer, but they didn’t fit the typical breast cancer, patient composite—a woman diagnosed with breast cancer before the age of 40 or a man who has been diagnosed with breast cancer, for example.
Fortunately, the lives of many women have been saved by early detection through means of self breast exams and mammographies. One life saved is reason enough to support early detection and routine screenings.
If there were ever a time for socially conscious Americans to stand up in fight, this is that time. We must applaud all—including physicians and politicians—who have voiced a show of support against these potentially dangerous recommendations. A continued show of support for effective breast cancer guidelines will help to put these task force recommendations in the trash where they belong.
With all of this craziness going on, I then woke up this morning to hear that there are recommendations to change guidelines for the annual pap smear. What next? Hopefully, there won’t be anymore harmful recommendations in the near future!!!
For further reading, please review the following articles:
New Advice: Skip Mammograms in 40's start at 50
http://news.yahoo.com/s/ap/20091116/ap_on_he_me/us_med_mammogram_advice
US Mammogram Policy Will Not Change Says Health Secretary
http://www.medicalnewstoday.com/articles/171521.php
Pap Smear Guidelines: New recommendations call for tests every 2 years http://www.chicagotribune.com/health/chi-tc-nw-pap-smears-1119-1120nov20,0,6606495.story
Tuesday, November 17, 2009
Botox Injection Day
Today, I had a Botox injection appointment (Not for wrinkles--LOL; for the Cervical Dystonia). My last set of injections were done about three months ago. My neurologist injected me six times in various locations of my neck. Of course, I cried. Thankfully, my mother was there to hold my hand. I hope the spasms (especially on the right side of my neck) will get considerably better with this treatment. As usual, I'm glad that's over with!
Thursday, November 12, 2009
Can I Get An Autoimmune Specialist?
Wouldn't it be nice if everyone with an Autoimmune Disorder received their primary care from an Autoimmune Disorder Specialist?
I have Grave's Disease (an Autoimmune Disease) which has caused my thyroid to dysfunction. The Autoimmune aspect of my illness has never been addressed by any of my 10 Endocrinologists. We patients who have Thyroid issues, which stem from an Autoimmune disorder, have been lumped in with patients who simply have Thyroid disorders. As a result, my "specialists" have had no information for me in terms of the importance of avoiding inflammation and avoiding certain foods, for example. In fact, until I started researching the Autoimmune aspect of my illness a few years ago, I had no idea about the devastating impact that Grave's disease can have on the entire body.
It is for this reason that I think I would be better served under an Autoimmune Specialist. I'm not talking about a doctor who treats patients for an ailment and that patient happens to have an Autoimmune Disorder. I want Autoimmune Disease to be the doctor's specialty--treating autoimmune disorders, only. Then, it would be even greater if the Autoimmune Disorder Specialist could have a sub specialty (i.e. an Autoimmune Specialists who specializes in Sarcoidosis or an Autoimmune Specialist who specializes in Lupus, for example).
Typically, Lupus patients, for example, are treated by Rheumatologists. Rheumatologists are doctors who specialize in Arthritis and other diseases of the joints, muscles, and bones. Wouldn't it be more beneficial for a Lupus patient to be treated by an Autoimmune Specialists who specializes in Lupus versus a Rheumatolgist who has an interest or extensive knowledge about Lupus? This type of specialization would potentially offer a better course of treatment for patients who are suffering from Autoimmune Disorders.
There are Clinical Immunologists out there. But, correct me if I'm wrong, these doctors seem to deal more with allergies and areas such as Asthma. I have an Allergist/Immunologist and his focus has been on trying to help me to get a handle on my food intolerances. When I've asked him questions about my Autoimmune Disorder in relation to my other issues, he hasn't had much for me.
What will it take? Good Autoimmune Specialists will not simply fall out of the sky. These specialists would need to receive extensive training, and they should be required to keep abreast of the latest research into specific Autoimmune Disorders. With this extensive training, they would be able to do more "outside-of-the- box" thinking. And, research should always include focus groups that are solely formed to receive information from Autoimmune Disorder patients. In dealing with Autoimmune Disorders, the textbook is not always adequate. To get the real, low down story, patient involvement is absolutely essential.
I hope that one day there will be specialists who can truly and fully understand the plight of a person with an Autoimmune Disease!
Perhaps I'm oblivious to the fact that there are Autoimmune Specialists out there. I have tried to find this type of doctor in my city, but I have been unsuccessful. If anyone has a good Autoimmune Specialist (not an alternative or holistic doctor, please), please let me know. I would greatly appreciate the referral!!!
_______________________________________________
After writing this post, I decided to Google: Autoimmne Specialists (I wanted to make sure I hadn't overlooked anything in my search). Unsurprisingly, I didn't quite find what I was looking for. However, below is an interesting article. The article was written in 2000, but, unfortunately, it doesn't seem that much progress has been made in terms of treating Autoimmune Diseases.
Title of Article: Autoimmune Diseases Poorly Understood, Difficult to Treat
http://archives.cnn.com/2000/HEALTH/07/04/autoimmune.disease.wmd/index.html
I was listening to a radio show in which there was a doctor who was discussing Lupus. From listener comments and from my prior interactions with others who have an Autoimmune Disease, a common thread seems to be faulty care from doctors who treat these disorders.
Personally, I see an Endocrinologist once a year; he assesses my Thyroid Hormone levels. Even when I feel like crap, these numbers are usually stable. Unfortunately, I am being seen by a specialist whose primary training has more than likely been in the area of diabetes and/or another area that fits under the Endocrinology umbrella.I have Grave's Disease (an Autoimmune Disease) which has caused my thyroid to dysfunction. The Autoimmune aspect of my illness has never been addressed by any of my 10 Endocrinologists. We patients who have Thyroid issues, which stem from an Autoimmune disorder, have been lumped in with patients who simply have Thyroid disorders. As a result, my "specialists" have had no information for me in terms of the importance of avoiding inflammation and avoiding certain foods, for example. In fact, until I started researching the Autoimmune aspect of my illness a few years ago, I had no idea about the devastating impact that Grave's disease can have on the entire body.
It is for this reason that I think I would be better served under an Autoimmune Specialist. I'm not talking about a doctor who treats patients for an ailment and that patient happens to have an Autoimmune Disorder. I want Autoimmune Disease to be the doctor's specialty--treating autoimmune disorders, only. Then, it would be even greater if the Autoimmune Disorder Specialist could have a sub specialty (i.e. an Autoimmune Specialists who specializes in Sarcoidosis or an Autoimmune Specialist who specializes in Lupus, for example).
Typically, Lupus patients, for example, are treated by Rheumatologists. Rheumatologists are doctors who specialize in Arthritis and other diseases of the joints, muscles, and bones. Wouldn't it be more beneficial for a Lupus patient to be treated by an Autoimmune Specialists who specializes in Lupus versus a Rheumatolgist who has an interest or extensive knowledge about Lupus? This type of specialization would potentially offer a better course of treatment for patients who are suffering from Autoimmune Disorders.
There are Clinical Immunologists out there. But, correct me if I'm wrong, these doctors seem to deal more with allergies and areas such as Asthma. I have an Allergist/Immunologist and his focus has been on trying to help me to get a handle on my food intolerances. When I've asked him questions about my Autoimmune Disorder in relation to my other issues, he hasn't had much for me.
What will it take? Good Autoimmune Specialists will not simply fall out of the sky. These specialists would need to receive extensive training, and they should be required to keep abreast of the latest research into specific Autoimmune Disorders. With this extensive training, they would be able to do more "outside-of-the- box" thinking. And, research should always include focus groups that are solely formed to receive information from Autoimmune Disorder patients. In dealing with Autoimmune Disorders, the textbook is not always adequate. To get the real, low down story, patient involvement is absolutely essential.
I hope that one day there will be specialists who can truly and fully understand the plight of a person with an Autoimmune Disease!
Perhaps I'm oblivious to the fact that there are Autoimmune Specialists out there. I have tried to find this type of doctor in my city, but I have been unsuccessful. If anyone has a good Autoimmune Specialist (not an alternative or holistic doctor, please), please let me know. I would greatly appreciate the referral!!!
_______________________________________________
After writing this post, I decided to Google: Autoimmne Specialists (I wanted to make sure I hadn't overlooked anything in my search). Unsurprisingly, I didn't quite find what I was looking for. However, below is an interesting article. The article was written in 2000, but, unfortunately, it doesn't seem that much progress has been made in terms of treating Autoimmune Diseases.
Title of Article: Autoimmune Diseases Poorly Understood, Difficult to Treat
http://archives.cnn.com/2000/HEALTH/07/04/autoimmune.disease.wmd/index.html
Tuesday, 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.
Thursday, July 30, 2009
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.
Wednesday, June 3, 2009
Reflection/Opinion
When I was diagnosed with Dystonia in the spring of 2008, I struggled with accepting that I would have this disorder for the rest of my life. According to my neurologists, the only options that might help reduce my symptoms were medications and Botox in order to help release the painful, spasming muscles in my neck. From my research, the medicines can cause even more side effects and make you feel like a zombie, and they don't really work effectively for most people. I have had Botox injections on several occasions. But, I'm not particularly fond of having poison injected into my body on a regular basis.
Dystonia has caused me great physical pain; I experience tightened muscles that spasm in my neck and back and pain that shoots down in my arm. So, of course, I began to research alternative methods for treating this disorder. Disappointingly, aside from possible invasive brain surgery called Deep Brain Stimulation, for which not all Dystonia sufferers are even eligible, there are not many other options besides the surgery, Botox, and meds.
Currently, my neck is more straight or centered. However, I still suffer from painful spasms and pain that cannot necessarily be seen; but I sure feel it. Some days it is still hard to hold my head up due to the spasms and weakness in my neck. So, I continue in my quest for more relief from my symptoms.
I continue to read/research remotely similar conditions. I try to implement things that I feel might help. I remain very prayerful about anything I choose to try. (i.e. supplements, etc.). More importantly, I am in consistent prayer that the Lord will continue to place Favor upon me and lead me to powerful resources. Most importantly, I pray for healing.
For example, I have Graves' Disease which is an autoimmune disease. Not one of my endocrinologists have ever mentioned the importance of a healthy, anti inflammatory diet. I was never even told that I was at risk for osteoporosis; I had to find that out the hard way. Research has proven that the anti inflammatory type diets have helped many patients with Autoimmune diseases to improve their symptoms. I only wish that I would have known the importance of this type of diet and the importance of taking antioxidants earlier. But, better late than never. Yet, my endocrinologists simply read my results from the blood tests and determine whether or not the dosage of my medication is correct--nothing more, nothing less.
The body works synergistically. So, wouldn't it make sense to treat the nature of illness in that manner as well? I have consulted with an Integrative Doctor through a reputable hospital. However, while I am blessed to have located this doctor for guidance, this doctor does not make any attempt to connect the Graves' Disease and the Dystonia and the Leaky Gut Syndrome, or any other issues. I would venture to say that all of my illnesses are connected in some way.
It would be very beneficial if it was the normal practice of all physicians to take the time to develop hypotheses and theories for cases/conditions that aren't so straightforward. After all, fundamentally, aren't those the principles that science is based on? But, it's more like wham, bam, thank you ma'am and you're rushed out of the office. We also must give our insurance companies credit for putting a cap on the time that we are "allowed" to spend with our doctors.
Unfortunately, in this day and age, one doctor or medical professional may not be the only answer when you are suffering from chronic, degenerative illnesses. But, a combination of approaches might be necessary to see improvements and hopefully eventual healing.
Hopefully, in the future, more doctors will be trained to take a "whole body" approach when it comes to the practicing of medicine. Doctors need to understand that one out of whack system can affect another system. This type of training would have to be undertaken very carefully and not all doctors would be able to handle it. But, I believe their are some medical professionals who may be brilliant enough to handle this type of challenge.
The "dream" doctor would need to have the following qualities: they must be highly intelligent, the doctor must be able to think critically, the doctor would need to have an insatiable curiosity about their patients' unique issues (because we know that not all patients are created equal; what works for one may not work for all), they would need to be motivated to keep up with ongoing research, and an extreme amount of compassion would be nice. And finally, the doctor should be able to think outside of the box. I would love to be in the care of a doctor like that (which insurance would cover)!
I am fully aware that illness and death are a part of life. Some will get better and some will not. However, God gives us free will. And, it is my philosophy that I must do what I can to help myself. So, I pray that the Lord will continue to give me strength to remain open to positive possibilities.
Be Careful about what you read, ingest, etc.
I have been given this advice on several occasions. This is good advice. As mentioned in prior posts, I take a variety of supplements, I am on a restricted diet, and I have tried some alternative treatments such as acupuncture. Some things seem to help and some don't.
To anyone trying alternative treatments, I would advise you to be careful. To anyone trying "traditional treatment" through a doctor, I advise you to be careful, too; I have had a host of problems associated with supposedly "good" doctors who don't seem to know much about the medicines they are prescribing or conditions that they are supposed to be treating. A part of a doctor's oath is "Do No Harm." Unfortunately, unintentional harm (due to neglect, dismissal of patients' concerns, unwillingness to do research in an effort to help, etc.) happens everyday--I can attest to that.
I have read that it takes 10-12 years for the powers-that-be in traditional medicine to buy into certain treatment protocols and illnesses. I believe this is why illnesses such as Leaky Gut Syndrome are not more widely understood or treated. I believe that once, hopefully in the near future, this type of illness is correctly treated and understood, there might be less suffering in the way of degenerative illnesses such as cancer and Autoimmune illnesses.
I guess that I've become somewhat of an experimenter in the sense that I am willing to try nontraditional approaches(i.e. vitamins, acupuncture, yoga etc.) in an attempt to help some of my medical issues/symptoms. I pray on everything before I choose to embark on it, and I pray while I'm "in the midst of it all." I feel that the Lord has blessed me with a certain amount of intelligence that allows me to read and understand the articles and books that I have encountered. Now, if it's something that looks too technical and hard to understand, I know to leave it alone-LOL.
While I do get weary and very frustrated, I try to remain faithful. Everyone will not understand why I do what I do or why I think the way that I do. That can be frustrating. But, in the end, I don't understand everybody either. So, this is okay and completely understandable.
Some might believe that I should release everything unto the Lord; I agree. I do believe that I have no control over my situation, and the Lord will determine my plight. However, we have all been given Free Will. I choose to use my Free Will to try and figure out some ways to make my life more physically comfortable. I simply pray for His guidance. I don't think the Lord would have a problem with that. As long as I'm not constantly complaining or have a woe-is-me attitude, I think He is okay with me.
God Bless and thanks for reading my Blog
Dystonia has caused me great physical pain; I experience tightened muscles that spasm in my neck and back and pain that shoots down in my arm. So, of course, I began to research alternative methods for treating this disorder. Disappointingly, aside from possible invasive brain surgery called Deep Brain Stimulation, for which not all Dystonia sufferers are even eligible, there are not many other options besides the surgery, Botox, and meds.
While the Botox has helped and I am grateful that this is an option, it has not cured my symptoms. Through research, I did find cases where physical therapy helped some patients who have Dystonia. So, I spent much of last summer going back and forth to physical therapy sessions. Up until the physical therapy, I was not able to turn my head to the left. My neck was locked in a painful, spasming state. So, I do credit Botox and Physical Therapy with helping my condition.
Currently, my neck is more straight or centered. However, I still suffer from painful spasms and pain that cannot necessarily be seen; but I sure feel it. Some days it is still hard to hold my head up due to the spasms and weakness in my neck. So, I continue in my quest for more relief from my symptoms.
I continue to read/research remotely similar conditions. I try to implement things that I feel might help. I remain very prayerful about anything I choose to try. (i.e. supplements, etc.). More importantly, I am in consistent prayer that the Lord will continue to place Favor upon me and lead me to powerful resources. Most importantly, I pray for healing.
I am blessed by the support of several family members and friends. On occasion, I have been asked quite a few questions and have received some interesting comments from family, friends, and/or acquaintances regarding my illness. I will discuss a few of them.
Regarding Denial/Acceptance:
Someone was concerned that I was not accepting my illness, because of the consistent research that I do in terms of searching for ways to make myself healthier.
While my approach may not work for everyone, if I do not continue to search for ways that will help me to feel better and function better, then I feel that my existence would be very bleak and depressing. When I stop looking for other options or ways to improve my health, I will have given up hope. Don't get me wrong, some days I do get a bit down and/or upset, because I may be in pain and I become frustrated because I want my progress to move more quickly. However, I pray for patience at that point.
My doctors told me that my illness (Dystonia) will never go away. I am thankful that we have doctors to help guide us in our journey. However, no doctor has all of the answers. In fact, none of my doctors have shown much interest or knowledge about all of my individual issues or illnesses(i.e. the Endocrinologists knows nothing about Dystonia; the Integrative doctor doesn't mention anything about Autoimmune Disease). In my personal experiences with many doctors, they solely focus on "medicating" or "treating" me for the issue that they are specifically trained to deal with versus trying to figure out ways to help me become healthier so that my body will develop a more strengthened immune system.
I understand that a doctor can only treat you based on their area of specialization or expertise. However, it would be nice if a doctor even attempted to try and make some connections. Heck, if I were a doctor, which I'm not, I'd be hypothesizing ,"It's possible that a contributing factor of your developing Dysonia is..." When I pose these types of questions and/or research to the doctors, some of them get offended, some of them listen but don't really give it a second thought, some simply don't have enough interest to care, and some simply are not knowledgeable enough about various aspects of health to think outside of the box. I know that doctors are up under various guidelines by the AMA, but I'm sure that they could do more than to simply recite technical jargon that comes from a textbook. It's ridiculous!
For example, I have Graves' Disease which is an autoimmune disease. Not one of my endocrinologists have ever mentioned the importance of a healthy, anti inflammatory diet. I was never even told that I was at risk for osteoporosis; I had to find that out the hard way. Research has proven that the anti inflammatory type diets have helped many patients with Autoimmune diseases to improve their symptoms. I only wish that I would have known the importance of this type of diet and the importance of taking antioxidants earlier. But, better late than never. Yet, my endocrinologists simply read my results from the blood tests and determine whether or not the dosage of my medication is correct--nothing more, nothing less.
The body works synergistically. So, wouldn't it make sense to treat the nature of illness in that manner as well? I have consulted with an Integrative Doctor through a reputable hospital. However, while I am blessed to have located this doctor for guidance, this doctor does not make any attempt to connect the Graves' Disease and the Dystonia and the Leaky Gut Syndrome, or any other issues. I would venture to say that all of my illnesses are connected in some way.
It would be very beneficial if it was the normal practice of all physicians to take the time to develop hypotheses and theories for cases/conditions that aren't so straightforward. After all, fundamentally, aren't those the principles that science is based on? But, it's more like wham, bam, thank you ma'am and you're rushed out of the office. We also must give our insurance companies credit for putting a cap on the time that we are "allowed" to spend with our doctors.
Unfortunately, in this day and age, one doctor or medical professional may not be the only answer when you are suffering from chronic, degenerative illnesses. But, a combination of approaches might be necessary to see improvements and hopefully eventual healing.
Hopefully, in the future, more doctors will be trained to take a "whole body" approach when it comes to the practicing of medicine. Doctors need to understand that one out of whack system can affect another system. This type of training would have to be undertaken very carefully and not all doctors would be able to handle it. But, I believe their are some medical professionals who may be brilliant enough to handle this type of challenge.
The "dream" doctor would need to have the following qualities: they must be highly intelligent, the doctor must be able to think critically, the doctor would need to have an insatiable curiosity about their patients' unique issues (because we know that not all patients are created equal; what works for one may not work for all), they would need to be motivated to keep up with ongoing research, and an extreme amount of compassion would be nice. And finally, the doctor should be able to think outside of the box. I would love to be in the care of a doctor like that (which insurance would cover)!
I am fully aware that illness and death are a part of life. Some will get better and some will not. However, God gives us free will. And, it is my philosophy that I must do what I can to help myself. So, I pray that the Lord will continue to give me strength to remain open to positive possibilities.
Be Careful about what you read, ingest, etc.
I have been given this advice on several occasions. This is good advice. As mentioned in prior posts, I take a variety of supplements, I am on a restricted diet, and I have tried some alternative treatments such as acupuncture. Some things seem to help and some don't.
To anyone trying alternative treatments, I would advise you to be careful. To anyone trying "traditional treatment" through a doctor, I advise you to be careful, too; I have had a host of problems associated with supposedly "good" doctors who don't seem to know much about the medicines they are prescribing or conditions that they are supposed to be treating. A part of a doctor's oath is "Do No Harm." Unfortunately, unintentional harm (due to neglect, dismissal of patients' concerns, unwillingness to do research in an effort to help, etc.) happens everyday--I can attest to that.
I have read that it takes 10-12 years for the powers-that-be in traditional medicine to buy into certain treatment protocols and illnesses. I believe this is why illnesses such as Leaky Gut Syndrome are not more widely understood or treated. I believe that once, hopefully in the near future, this type of illness is correctly treated and understood, there might be less suffering in the way of degenerative illnesses such as cancer and Autoimmune illnesses.
I guess that I've become somewhat of an experimenter in the sense that I am willing to try nontraditional approaches(i.e. vitamins, acupuncture, yoga etc.) in an attempt to help some of my medical issues/symptoms. I pray on everything before I choose to embark on it, and I pray while I'm "in the midst of it all." I feel that the Lord has blessed me with a certain amount of intelligence that allows me to read and understand the articles and books that I have encountered. Now, if it's something that looks too technical and hard to understand, I know to leave it alone-LOL.
While I do get weary and very frustrated, I try to remain faithful. Everyone will not understand why I do what I do or why I think the way that I do. That can be frustrating. But, in the end, I don't understand everybody either. So, this is okay and completely understandable.
Some might believe that I should release everything unto the Lord; I agree. I do believe that I have no control over my situation, and the Lord will determine my plight. However, we have all been given Free Will. I choose to use my Free Will to try and figure out some ways to make my life more physically comfortable. I simply pray for His guidance. I don't think the Lord would have a problem with that. As long as I'm not constantly complaining or have a woe-is-me attitude, I think He is okay with me.
God Bless and thanks for reading my Blog
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