[Anonymous July 12, 1998 at 8:03 am Post count: 93172]

#1050228

To Everyone

First of all, I would like to express my appreciation and gratitude to everyone on this board. I, for one, have found this place to be a safe harbor in times of stormy seas. I am not sure how I would have made it through some very difficult times without being able to come to the board and learn, laugh, and sometimes even cry. On a board such as this, there is bound to be agreement and disagreement. That is part of what makes it such a wonderful place. Hopefully everyone who posts here will feel comfortable enough to express their opinions openly and honestly.

Jake, I too believe in the concept of silent service as a way of life. I have been involved as an adult volunteer in a youth organization for the past 13 years. Four years of that time were spent in leadership positions on the state level. Along the way, I made a lot of personal sacrifices in order to accomplish what I considered to be worthy goals, as does any good volunteer. I even have a button that says, “Don’t yell at me…I’m just a volunteer.” I also learned a lot about leadership and volunteerism. When I first begin my involvement on the state level, someone gave me some execllent advice. That advice was to never count the money or the hours I spent, because during the “down times” I would begin to resent it, and therefore lose my focus on the good that I was doing. I also learned that there would be people who would disagree with decisions I made. Some of those who disagreed would remain silent, some would discuss it behind my back, and others would speak to me about it directly. I learned to appreciate those who showed the courage to address the issues with me directly. I also learned first hand about burn-out. Sometimes you have to step back and regroup. If one doesn’t do that, it becomes very difficult to continue to be effective as a leader. That is something that is sometimes difficult for someone who has not experienced it to understand. I have and I do. For those of us with health issues which are affected by stress, that is especially important.

I noticed several posts from last Friday evening about a “meeting” for people willing to volunteer to assist the NGDF. Since I am “assuming” (yes, I know what it means to assume) that meeting was prearranged, I can’t help but wonder why there weren’t any posts advertising the meeting until after the fact. It is hard to get people to “show up” for a meeting if they don’t know about it in advance.

One of the unique things about this (or any) internet bulletin board is the comings and goings of various people. As a result of this, it seems that certain topics continue to resurface. I believe it is important for this to happen, as not everyone will have the time or the patience to read through almost 20,000 posts! From my own leadership experience, I frequently had to answer the same questions over and over and over again. I know how tiring that can get, and I also know that sometimes the answer may not be given as politely the 20th time as it was the first time. Answering these same questions is especially important in a venue such as this, because of the continually changing information that is available about Graves’ Disease. For the most part, I think the posters here do an admirable job of this.

It seems to me that when the topic of Graves’ Disease research and the NGDF come up, things get a little testy. Joining the NGDF was one of the first things I did after my diagnosis–part of my decision to become a proactive patient. I would certainly encourage others who are in a position to do so, to join. There is power in numbers! So, as a card-carrying member, I am going to “assume” that I have a right to express my opinions about this. LOL First, I think that is is easy to “assume” that because the NGDF is a national foundation about a disease, people tend to view it in the same light as they would the American Cancer Society, or the American Heart Association, etc. The missions of many other “disease of the day” organizations do include research, and again, it is easy to jump to the conclusion that the NGDF does (or should) also. BUT, when one reads the mission statement, it is clear that funding for research is NOT one of the goals of the NGDF. However, I believe that the topic of Graves’ Disease research is one that should be encouraged in this forum. After all, it is a goal of the NGDF to educate.

Kudos to the NGDF volunteers for their efforts in finding a national spokesperson! I have great hopes that this will be an incredibly positive experience! The organization with which I am involved sponsors a national charitable foundation also. I have often said (semi-in-jest) that what we need is someone to play celebrity Wheel of Fortune to help get the word out and also raise funds. Perhaps the NGDF spokesperson would be willing to do that!

It seems to me that everyone who reads this board or posts, is actually a volunteer. We are volunteering our time and energy to learn more about the disease which has affected our lives and well-being. Three cheers for all the volunteers!

Cindy

[Anonymous July 31, 1998 at 2:26 am Post count: 93172]

#1148755

Hi, I too appreciate all the people who work behind the scenes to set up and make this bulletin board work (I have posted and e-mailed my thanks many times in the past two years). I myself do phone volunteer work for a large organization and many of the calls I receive are difficult to deal with and I have had to take a lot of abuse. I also have to realize that I volunteered for this work. The good comes with the bad. To me it is all worth it when I speak to someone who really wants to hear what I have to say and makes an effort to do something about their problems. The thing about a support group is that you are talking with people who are now where you have been and feel like you have felt. Everyone here has experienced or is experiencing one of the many many symptoms of Graves Disease. So I agree with Cindy that we are all volunteers in keeping this BB going.

Keep up the good work of caring and sharing everyone. Thanks.

[Author]

Posts