Thursday, August 27, 2009
"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
Sunday, August 23, 2009
Stop The Thyroid Madness.com
Articles about shortage of thyroid medication
Armour Thyroid site
RLC Labs: Manufacturers of Naturthroid and Westhroid
Friday, August 21, 2009
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
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
Wednesday, August 5, 2009
Tuesday, August 4, 2009
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?"
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.
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.
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