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MY ROLE FOR YOU AND ME AT MED HELP

Jan 17, 2009 - 10 comments
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Togetherness

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support

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Friendship

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guidance

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compassion

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caring

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individual treatment

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respect



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Hello,

I wanted to clarify myself here and what my feelings are as a part of this community. I have a history of autoimmune thyroid disease as many know - but I am a member here - just as we all are.

Listening to many posts on the board I feel I have alot in common with many - especially when I was at my absolute lowest. I read the "fear" in so many posts - especially with new members, and I clearly remember my first day for the exact same reasons - like them............ I needed SUPPORT and COMFORT.

At my worst - I lurked desperately all over the internet to find "someone" who would understand what I was going through. I found it here and it brought me to tears reading "others" are out there like me. I'm not crazy....... it is REAL!

I remember my first response off my first question. "WE ARE HERE FOR YOU" - "WE KNOW WHAT YOU ARE GOING THROUGH."  Those two simple sentences have stuck in my mind and will remain there forever.

As time past and I started getting the resources on WHY I was in such bad shape - I developed a system of how to overcome these symptoms of this terrible disease  - I am now plague with for life. In addition - I gained the knowledge of understanding I was an individual and what may work for one - may NOT be right for another.  I found this out simply with trial and error and a willing doctor that worked with me.

I learned about ME.

Doing that and getting healthier little by little - I gained more strength to FIGHT for ME to get even better. I found the "will" to find doctors I KNOW now work WITH me and help me understand who I am with this disease.

Do I have the answers for you? - I doubt it - but I want to share the experiences I had finding what works best for me. Am I ridden of my disease? - NO - I never will be. But the most important thing.... - Am I better than I was? - YES - Dear Lord - I AM.

Now - because of me finding MY individual treatment plan- (which for SOME is not the "best" plan) I fall into a mix of controversy. Have I searched websites that are looked upon as "less" than medical journals and resources? YES - YOU BET I have  - and still do.

Some of those sites have helped me understand "why" I feel better with my treatment not because of studies or medical journals, but because of patient experiences  - as I want to share with you  - here at MH.

Look, I am NOT an advocate of any CERTAIN treatment. I don't believe one way is best. My goal here is you are packed with as much information as possible so you are not SICK ANYORE!  I believe my goal here is exactly why Med Help was started - at least that is how I interpret the conversations I have with them.

What I do believe is this. Looking back on my first day here and the fear- worry- anxiety and ILLNESS I was in FOR YEARS was horrid. The compassion of a stranger hundreds of miles away sharing with me that I was NOT alone was priceless.

I accepted the invitation to be your Community Co Leader for just that. To support you - and offer whatever personal experience I went though to see if you can find (with your doctor) help to get you back being YOU.

That's all - no internet sales - no advocates for certain treatments - and certainly not acting like I KNOW IT ALL.

I won't be challenged any longer on posts or PM's on what my presence or roll is here as Med Help's Co Community Leader for thyroid- IT IS WHAT IT IS as I stated above - and that's that. If my plan of support needs changing - then by all means let me know publically or privately.

Writing this has been refreshing for me and I hope with your help - opening up suggestions on making this board grow with the times - (Like Live Chat with a doctor) helps empower you to find the right information you need to put "it" all back together so your life becomes enriched with feeling well again.









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by jimi1822, Jan 17, 2009
Stella5349,

           Thank You so much for taking the time and effort to post. I personally think MH is all about Sharing and Caring
        with a splash of Fun and Encouragement. Because everyone is a a variable with our own DNA and imune system
        it is a wonderful thing to share and understand different tx ( treatment ) plans. My wife has Hashimoto's, thyroiditis,
        and ciliac disease and is going through a tough time with absorbing nutrients and now we just learned that synthroid
        may not be gluten free and even a little gluten can act as a poisin to someone with ciliac disease. Anyway Thanks
        again for posting and I absolutely Love Your profile picture it reminds of United Colours of Benneton :o)

                                                                                                        Peace, Love, Prayer, and Unity

                                                                                                                                              jimi :o)

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by Me967, Jan 17, 2009
Stella5349 Hi.  
I'm still in those early stages of not understanding much.  At times I feel much like you toward the beginning of your sixth year.  Looking back I believe my issues all started about 6-7 years ago too.  Though with me it all seemed to be heart related.  I've been on here for about a year though and love when I can "actually" help out someone else.   LOL  If nothing else I just like to welcome people in, just to let them know that someone out there actually understands and cares about them enough to just listen.  
Your post is very nice above and is great not only for older members but a great welcome to new ones.  That was very kind of you.

Getting a doctor on the site is great too!  Take care and God Bless you and yours.  Amy.

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by laura1967, Jan 17, 2009
Very nicely written Stella! I hope you are feeling much better today! Many HUGS!

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by ChitChatNine, Jan 17, 2009
To Stella, Laura, &  our community members ........Without you, we wouldn't be as healthy and empowered as we are today.  The word Community in Community Leader says it all ........we are doing an awesome job together as a community and growing together as a community and this is something we are all so very proud of.  

Without this community, I would never be where I am today or be the same person .. for this, I am thankful to have found MedHelp & our Thryoid Community.  In essence, having  traveled the path of thyroid disease has helped me to  become a better person because of people like you and our MedHelp members, Dr's and friends.

Thanks to all for all you are doing to continue to help us grow .........I'm always available via PM anytime for anybody .. :)

C~


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by PlateletGal, Jan 17, 2009

Well said, Stella ! I feel the same way. CL's and Co CL's are MedHelp MEMBERS. We do not work for MedHelp... we only volunteer to keep an eye on things.  We are also patients and we also are here not only to share what we've been through, but to learn as well. That is why I joined MedHelp years ago, when I was feeling isolated with my illness.



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by VaBreeze, Jan 17, 2009
Stella -

I love the way you put this together.  I totally understand where you are coming from here.  We aren't medical professionals, but those who have been down the long road with health problems themselves.  We can only offer a bit of knowledge from those experiences.  We don't have all the answers, but we have the internet and can lend an ear or shoulder through the difficult times.  Illness = isolation.  The greatest feeling is knowing someone else understands and that you aren't alone.  

I joined with MedHelp because of their innovative views about illnesses.  Something fresh and challenging compared to what i've heard in the past.  I found hope...and that is much needed by anyone with a chronic/debilitating illness.

I echo everyone else here.  Take care of yourselves.

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by teko, Jan 17, 2009
Refeshing and very well put. We are just people with experiences to sharte, to take what helps us and leave the rest, altho the rest may help someone else who reads it. No one is wrong or right.

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by LIsaD69, Feb 15, 2009
By the time I found this community, I was starting to 'put it all together' and get myself the 'real help' that I needed.  It was just wonderful to 'not feel alone' and put what I had heard 'out there' to make sure 'I wasn't missing anything important or getting things wrong' and to also share/help others with my experiences.
Thankyou for making this possible.

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by Anu0506, May 12, 2009
Oh, it is so beautiful. You have touched my heart. I have never seen you but deep inside me i know i know you. THANK YOU!!!

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by Lori575, Nov 13, 2009
Bravo!  That was perfectly worded.  I'm not sure why you wrote this, but it was absolutely awesome.  I cannot believe for one second that someone would be so cold as to question your reasoning, etc.  I have only been an active member of this site for a short time, and I can say that it ....and you personally have helped me such a HUGE deal.  You were right when you said it is PRICELESS.  People need to make their own decisions and utilize critical thinking when it comes to their own health, but we can't make uneducated decisions either.  These forums ...due to people like you, are a wonderful tool for doing so.  If someone is questioning you, they are obviously unable to think critically.  The knowledge I have gained and the support I have received is far more valuable then taking the advice of one (human) doctor.  I hope you truly know the greatness of the benefit you are providing here. Thank you!!
Lori

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