Viewing 15 posts - 1 through 15 (of 18 total)
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  • Kimberly
    Online Facilitator
      Post count: 4291

      The Graves’ Disease & Thyroid Foundation is updating the structure of this forum to include a new category of member: Graves’ WARRIORS!

      WARRIORS* are patients who have “been there, done that” with Graves’ disease, thyroid eye disease, Hashimoto’s thyroiditis, thyroid nodules, or another related disorder. These patients have been long-term members of our forum, have (mostly) stabilized their thyroid levels, are willing to share their knowledge and experience with others, and serve as examples in upholding the GDATF forum guidelines. Life isn’t always perfect for our WARRIORS, but they have achieved a “new normal”, are moving forward with their day-to-day lives, and are ready to start reaching out to others.

      ONLINE FACILITATORS are either WARRIORS and/or GDATF staff members. ONLINE FACILITATORS have the authority to enforce the forum’s guidelines by editing posts, deleting posts, removing links, locking down threads, or suspending/banning users. WARRIORS can one day move on to becoming ONLINE FACILITATORS if they choose to do so.

      If you are interested in joining the team as a Graves’ WARRIOR, please contact the GDATF at info@gdatf.org!

      *The WARRIOR terminology goes back to the very early days of this forum and the introduction to “Graves’ Disease In Our Own Words”, written by Jake George and Dr. Nancy Patterson (intro written by Jake George):

      “When one is born he is given a path to follow that is his life. Along this path are many crossroads, trials, hardships and, yes, pleasures. As we travel this path that is our life, we have decisions to make when we reach a crossroads. Do I go left, right, or straight? The path we choose has the trials, hardships and pleasures on it already. They are just waiting to be encountered. It is how you treat what you find along the way that determines the outcome. This is the way of the warrior. It is called the Warrior Spirit.

      As you travel this path, make a decision when necessary and follow it to its conclusion. Do not second-guess yourself. Look back only for answers to questions that you now face. It does no good to question past choices. They are done. Now decide what you aregoing to do to make your life better. Do not think of yourself as a sufferer or a victim. You have Graves’ disease, and it is okay. Take charge of it. Live the Warrior Spirit and take control of your destiny. (Written by Jake George, coauthor)

      This book is dedicated to people with Graves’ disease who live life as Warriors.”

      SueAndHerZoo
        Post count: 439

        Hi Kimberly.
        What are the commitments and obligations of a Warrior? In other words, what’s the difference between being a Warrior and being someone who’s often on the forum sharing experiences and commenting on other’s threads?
        Sue

        Kimberly
        Online Facilitator
          Post count: 4291

          Hi Sue – There aren’t hard and fast rules, but the idea is that the “Warriors” (1) have been posting on the forum for a while, (2) have selected a treatment option and reached a point where levels are normal and stable, and (3) continue visiting the forum primarily to share their experiences with others.

          It’s not *exactly* the same situation, but I’ll steal Nancy’s line that she uses on people who are considering starting up a local support group: “Do you NEED a support group, or are you ready to LEAD a support group?” “Warriors” are those who are ready to start moving into more of a leadership role, although this will be waaaaaaay less work than starting an in person support group!

          In terms of commitments, the primary concern is to closely follow the GDATF’s forum guidelines. Other than that, there is *no* specific time requirement and *no* obligation to respond to every post. “Warriors” can simply continue to post as they always have, jumping in on specific threads that match their interest and experience.

          Does that help?

          SueAndHerZoo
            Post count: 439

            Yes, that helped a lot, thank you. At some point in the future perhaps I’d be qualified to be a Warrior but since my medication dosage is not stable yet and since I still “need” the forum, this probably isn’t the time.

            Thanks for clearing it up…. hope you get lots of eager volunteers!
            Sue

            snelsen
              Post count: 1909

              Hi Kimberly and Sue,
              Although I absolutely understand the thinking behind #2, I think there is room to realize the implications of it, when this particular criteria, might eliminate a candidate for Warrior, when in every other aspect, this person (in this case, Sue, but could be me, also) had a lot to contribute to the forum. In other words, unintended consequences.

              I’ll try to send a PM to both of you for a bit more elaboration of what I am thinking about.

              Shirley

              Kimberly
              Online Facilitator
                Post count: 4291

                Hi Shirley – Just sent a reply to your PM. The three criteria were intended to be guidelines, not a “three strikes” type of situation. To me, the overriding factor is really whether someone has achieved their “new normal” and is ready to transition from needing to support to reaching out and helping others.

                NOT that “Warriors” would never need help themselves — we *all* know that life can throw a nasty curve ball — but the majority of their presence on the forum would be in more of a supporting/sharing role.

                ChristinaDe
                  Post count: 115

                  Shirley ~ I think that you’re exactly who the foundation is talking about. Someone who’s “been there, done that” – and no longer “needs” the forum. Your diagnosis, treatment, and knowledge are so advanced that there are very few questions you’d ask that any of us could answer. I think that nearly every one of us has looked to something you’ve said or some encouragement you’ve given as we’ve battled through the fear & confusion of diagnosis, choosing an option, & for those of us who chose TT – dealing w/ its immediate aftermath. You’re always kind, don’t get mixed up in the “muck”, seem extremely honest, and have so much knowledge & experience. I’ve always found you so reassuring, whether responding to me last winter when I was scared to death or responding to others now. 😎

                  And Sue ~ I think that you will make a great warrior once you’ve reached your “new normal”. You’ll always need to monitor your body & labs, and you’ll always need to “tweak” replacement hormone as needed, but those changes and tweaks are nothing like the initial ones you’ve already experienced or may be experiencing in this early post-TT period. Your people skills are most impressive, and you seem very real & very honest. I’d say that you’re getting very, very close to Warrior status! :)

                  Kimberly ~ Love the Warrior concept! As has been mentioned before, most people who do well after treatment are not on these forums. I remember when I was faced w/ diagnosis & choosing a treatment option I had a hard time finding stories w/ good outcomes. This forum was, and is, the best I’ve found…but even here, there were only 2 post-TT people present back then. The others had left. I was desperate to hear the truth about what to expect from treatment, to hear the truth about what life was like afterward, & to get hope that one day I’d not only live w/ all this, but live well. I think that the forum will be even more incredible for future patients with the addition of RAI Warrior’s, TT Warriors, & ATD Warriors. The official “been there, done that” crowd! ;)

                  Kudos to the foundation for thinking of this one!

                  Kimberly
                  Online Facilitator
                    Post count: 4291

                    @ChristinaDe – Thanks for your thoughtful comments!

                    And thanks for reminding me to give kudos to Ski, who provided the initial spark that got this whole “Warrior” project started!

                    Gabe
                      Post count: 182

                      My vote is for Shirley! while so many on this forum (including the moderators) have been life-savers….Shirley stands out. She’s always around and hasn’t drifted away (as I sometimes find myself doing because of work commitments,,,not because I don’t need and value this forum). She’s compassionate, thoughtful, tough, tells it like it is, and just an all-around gem. There’s a picture of Shirley in the dictionary when I look up “WARRIOR”.

                      Hope all is well with everyone…

                      Karen

                      SueAndHerZoo
                        Post count: 439
                        Gabe wrote:
                        My vote is for Shirley! while so many on this forum (including the moderators) have been life-savers….Shirley stands out. She’s always around and hasn’t drifted away (as I sometimes find myself doing because of work commitments,,,not because I don’t need and value this forum). She’s compassionate, thoughtful, tough, tells it like it is, and just an all-around gem. There’s a picture of Shirley in the dictionary when I look up “WARRIOR”.

                        Hope all is well with everyone…

                        Karen

                        Couldn’t have said it better myself – Shirley’s input has been priceless.

                        However, poor Shirley never even said that she WANTED to do it. Guess we ought to hear how she feels about that before we pressure her into it. :)

                        (and of course, the decision is not ours but the Moderator’s)
                        Sue

                        Kimberly
                        Online Facilitator
                          Post count: 4291

                          Thanks to Shirley, Alexis, and Christina for joining the “Warrior” ranks! And would love to have Sue on the team as well when she is ready! If there are others who are interested, please let me know. I am working with our tech person to resolve an issue (with the names only showing up in orange on the forum index and not on individual posts), and then we should be officially up and running!

                          Also, just a quick note that EVERY single poster here has valuable experience to share. The idea with the “Warriors” is that newly diagnosed members would be able to join our group be able to quickly identify others who have gone through treatment and have come out on the “other side”. As Christina noted, it can be really difficult for newbies to find success stories online, and this will hopefully make that a little easier.

                          Raspberry
                            Post count: 273

                            Maybe some day I’d like to be a warrior, but it seems like each time I think I’m finally done and remission is in sight things go wonky again. I have a feeling I’ll be fighting this battle for quite a while. Great idea though and good for those who’ve signed up!

                            SueAndHerZoo
                              Post count: 439

                              A big thanks to the GDATF administration for thinking of and implementing this, and a huge thanks to those who have stepped up to become Warriors!

                              I’m right there with you, Raspberry. I would feel funny be a “Warrior” while I still have so many issues to work out and so many questions to ask of others so for now I will try to contribute and share what I learn as a member and regular poster.

                              I learn something from EVERYONE on here, and even when I’m not learning something, I’m feeling better just being part of this group and hearing what others experience.

                              So glad to be a part of this in any way, shape or form. :)
                              Sue

                              LaurelM
                                Post count: 216

                                I love this idea and would consider throwing my hat into the ring as this is not my first go around with Graves’ but considering i just had my TT last month and haven’t even had my
                                first set of post TT labs yet, it feels a little too soon.
                                Laurel’

                                snelsen
                                  Post count: 1909

                                  I am happy to be a Warrior. I’m guessing I will never leave the forum! IT has been such a life saver for me. In the ideal world, I would LOVE to meet almost all of the wonderful new friends I’ve met on the forum. I’ve been lucky enough to meet a few in San Diego, so I have actually met (and had a great time with) Ski, Kimberly and Nancy Patterson. I was lucky enough to meet Amy in Seattle.

                                  Truly, I have found TED a very traumatic event in my life. Graves, too, but remembering how hyper and crazy I was, so many years ago, is more of a blur in my memory, while TED has hit me hard, and is with me every waking (and sleeping, since I cannot close one eye at all when I sleep….)moment.

                                  The people here are wonderful. I do not feel alone, though I know none of us would wish ANY of this on anyone. It has really been difficult, that is for darn sure. It means everything to a new person to find this site, and know that they are not alone. Everything.

                                  Thank you so so much, Karen, Sue and ChristinaDe. Your comments mean so so so very much to me!

                                  I sure wish we could all know each other, at least for a day. There is so much empathy, kindness, understanding, support, caring and good and factual information here.

                                  As a complete change of subject, Seattle had thunder and lightning tonight, which we NEVER have, and as a native Iowa farm girl, I loved every moment and every flash of lightning, and every boom! Those early childhood memories are so strong.
                                  Good night,
                                  Shirley

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