"Jeanne's Endo Blog": Endochick's Scholarship Recommendation Letter. If She Wins The Scholarship, She Will Get News Media Coverage For Endometriosis!

Endochick has been blogging since March 2007. In her first bloggy life, she had a Blogger blog. Then she transferred to Wordpress in January 2008. So she has been blogging about endometriosis for just shy of two years now.

I was honored when Endochick of Endometriosis: The Silent Life Sentence asked me to write her a letter of recommendation for a college scholarship for which she is applying.

She was only allowed to submit one letter! Once I realized my letter was going to be "it" for recommendation letters, I wanted to be sure to do Endochick justice in my letter!! THE PRESSURE! :)

I completed my letter recently and sent it off to Endochick. I asked her permission to post it here.

(I will replace her full name below with her screen name of Endochick).

Endochick

Letter to the college scholarship judges:

I am writing to you today regarding Endochick.

I believe Endochick should get the Saint Mary-of-the-Woods Alumnae Leadership and Service Award because of her outstanding service to the endometriosis community.

Endochick and I share a common illness. It’s called endometriosis and it affects an estimated 89 million women and girls worldwide.

In fact, endometriosis affects more people than AIDS or cancer (as per The Ohio State University Medical Center website: The Ohio State University Medical Center website). Endometriosis is a very serious illness and its impact is all-too-often underestimated! (Having personally had cancer removed in 1996, I can tell you that endometriosis has had a far more profound effect on my life than cancer ever did). Women and girls need people to advocate for them and teach them how to advocate for themselves.

Endochick advocates fiercely for endometriosis patients every single day…

Endochick volunteers her time to write a very highly respected blog about endometriosis.

Her blog is called, “Endometriosis: The Silent Life Sentence” and can be found here:

Endometriosis: The Silent Life Sentence

It is one of the most helpful blogs I have found! Endochick’s writings on it are helping to support and inform patients and the public. Her blog elevates awareness of this insidious disease.

She is a role model for other endometriosis patients and other endometriosis bloggers/health bloggers! Her body of work encompasses a vast amount of information that enlightens the endometriosis patient community and educates anyone who reads it.

In June 2008, I began writing a blog about endometriosis. One of the first things I did was to look at the blogs that were already available. Endochick’s blog existed long before I began writing my own endometriosis blog.

Her blog stands out from the rest for many reasons...

It is well-written, packed with information, emotionally supportive, ranks highly on Google search engines, and she has loyal readers from many other endometriosis blogs. That last part alone is a testament to how helpful her blog is… women who are sick with this serious illness take time out of their busy days to read and post comments on her blog on a regular basis. Endochick has a loyal following of readers!

Endochick uses her spare time to write this educational, supportive blog that helps so many! Her blog has been featured by CureTogether (a medical research organization you can find at CureTogether). Her blog is featured on the endometriosis section of its website.

March is Endometriosis Awareness Month.

It isn’t March yet but Endochick has been very busy working on various endometriosis awareness-related activities!

Endochick has been instrumental to me in efforts to publicize an endometriosis awareness and understanding online petition that is gaining signatures every day:

Endometriosis Awareness Petition

The purpose of this petition is to get the media to understand that endometriosis affects many and affects them profoundly. We have 238 signatures and that number is growing every day. This online petition includes a comment field where each person signing it can leave their remarks. The heart-wrenching, emotional, painful comments left on this petition give the reader some insight into just how significantly endometriosis impacts patients and their loved ones.

She has worked with me to spearhead a letter-writing campaign that has captured the attention of Mariela Azcuy, Senior Associate Director of PR for Meredith Corp. (publisher of Ladies’ Home Journal, Siempre Mujer, and More magazines)...

Her impassioned plea for endometriosis awareness is posted on her blog as a “sample letter” to role model for others how to go about contacting the media with a request for coverage about a particular topic (in this case endometriosis).

See her blog entry: *ENDOMETRIOSIS AWARENESS* Letter Campaign Example!! for a peek at the “sample letter” she posted.

Posting articles such as this helps Endochick’s readers to follow her lead… and advocate for themselves and each other about endometriosis. Patients who might normally just passively read that Endochick contacted Ms. Azcuy are getting motivated to write their own letters. She uses her blog as a tool to educate and inform… as a means of empowering other endometriosis patients to follow her strong lead in bettering the lives of women and girls with endo.

She contacted Donna Jackson Nakazawa, a published author of a book about autoimmune illness/chronic illness, in an effort to obtain mainstream media attention to endometriosis.

Endochick’s tips and suggestions help patients improve their quality of life. Her generous sharing of her experiences on her blog (in often quite personal detail) helps patients enormously. I know this because I am one of the patients she has helped!

Endochick has urged readers of her blog and my blog to participate in the exciting Endometriosis Awareness Month activities we’ve been recently working on for March.

A few months back, an Internet predator was found to be preying on endometriosis patients on online support groups. Endochick published this fantastic article with tips for Internet safety:

Bloggers: Protect Yourself

I quoted this article in my own efforts to educate patients and other blog readers about the need for caution online.

One of my favorite posts from Endochick’s blog is:

Dancing With The Stars - Endometriosis

This article is so amazing, so thorough, and so informative that I asked her for permission to re-print this article on my own endometriosis blog in order to maximize the number of people seeing it!! It is a very comprehensive educational article about illnesses that can be confused with endometriosis. It makes a compelling case for the importance of getting a proper diagnosis!! In this blog post, Endochick related the chilling story of how her own sister’s cervical cancer was nearly mistaken for endometriosis. While endometriosis is a genetic illness, assuming that symptoms are endometriosis-caused without having a surgical procedure called a laparoscopy to verify that there is, in fact, endometriosis at the root of the symptoms could be a dangerous error. Her article was brilliant because it used her sister’s cancer story and her family’s endometriosis history combined to highlight the extreme importance of getting an accurate diagnosis before jumping to any conclusions. Her exhaustive list of illnesses that can mimic endo was superb! I was honored that she agreed to let me re-print this story on my own blog.

Endochick is a role model for other patients and for other endometriosis bloggers. Her blog is an important resource for patients and their loved ones. She is a huge contributor to the endometriosis community!

Endochick’s blog is well-respected by so many.

Listen to comments made on Endochick’s blog:

Comments from KEA:

"I just found your blog. I have endo also. Your title is so accurate it really touched me. I am sorry for your pain (not that it really helps), but your not alone in your pain (as im sure you know no matter what the docs say) I just wanted to say Thank You for sharing, thats what helps others to know theyre not alone either. They really do need to make more people aware but I think Its so wide spread and they know so little about it that theyre afraid of the reaction that would cause so they hide it and tell women its all in their imagination…. It gets hard suffering in silence while you appear to be healthy because no one believes you...[sic]"

Comments from Endogirltoo:

"Thanks so much for you words, you encourage me today when I didnt know what else to do!"[sic]

Comments from janniesue:

“Hello Endochick. I read this, your guest post on Jeanne’s Endo Blog and wanted to come over here to thank you for listing the many possible conditions that may indeed mimic endo conditions. It is indeed of the utmost importance that correct diagnoses be made.

Although my endo was able to be controlled, in fact stopped (after diagnosis via lap and surgery), there are still so many women out there suffering, given less than optimum care, even given misinformation by doctors. Any awareness that can be raised to help dispel myths is a step in the right direction. Thank you!”

The guest post Janniesue mentioned above was the re-print Endochick generously allowed me to do of this article:

Dancing With The Stars - Endometriosis

This article was so loaded with information that I wanted my blog readers to benefit from Endochick’s keen insights and exhaustive list of illnesses that can mimic endometriosis. I asked her to be a Guest Blogger for me because her writing is so good that it should be publicized as much as possible to help endometriosis patients.
The blog post above was especially helpful because it could save lives! Endochick related a compelling story regarding her sister’s experience with symptoms that mimicked endometriosis when, in fact, they were cancer! Endochick’s blog post illustrates the importance of proper diagnosis!

That post alone was incredibly educational for the public because it made a strong case for getting a proper diagnosis rather than jumping to conclusions. Her words in that post can potentially save lives.

Endochick is generous with her knowledge and wisdom. She mentors others, she leads by example, and she shares what she learns to help others learn and grow. She is empathetic, warm, funny, and compassionate. She has been blogging since March 2007. I asked Endochick recently how much traffic her blog gets. It averages 56 hits (and growing) per day! Clearly she is reaching many women and girls with endometriosis and their loved ones!

__________ writes her blog using the screen name “Endochick”. Here is how she describes herself on her blog:

“Endochick is a writer, a mother, a wife, and a student. She suffers from Stage III endometriosis, Sheehan’s Syndrome, Complicated Basilary Migraines, and hypothyroidism. This is her blog about her ongoing struggle with endometriosis and how it affects her life and her passion: writing”

Endochick’s blog is well-respected within the endo community and bloggers like Janniesue and Foxy take time out of their busy lives to leave positive feedback comments on her “Endometriosis: The Life Sentence” blog.

The endometriosis community is very fortunate to have Endochick’s talents as a writer... Her advocacy on behalf of women and girls with endo is unmatched. She is a driving force on getting needed support and information out to patients. Endometriosis has a profound effect on the lives of patients and their loved ones. From its potential affects on patients’ careers, education, relationships, fertility, chronic pain, etc., endometriosis is a very serious illness with a much underserved population. Endochick is part of the solution to the problem of patients lacking support, education, resources, and self-advocacy skills. Endochick is a role model for all endometriosis patients!

In addition to her blog writing, Endochick is a role model for endometriosis patients in other ways. She is committed to a vegetarian diet as a way to heal the body of manmade chemicals and additives, she’s committed to eco-friendly products as a way to both heal the planet and heal her body.

Endochick doesn’t just talk the talk. She walks the walk.

She has triumphed over her multiple chronic illnesses to function as a wife, mother, student, employee, and writer of a blog that helps many people.

I believe Endochick should get the Saint Mary-of-the-Woods Alumnae Leadership and Service Award because of her outstanding service to the endometriosis community.
Her dedication and years of volunteer service are a testament to her passion for the endometriosis cause. Her blog helps people around the globe to obtain high quality information, support and resources for managing life with endometriosis. Her blog combines information, dignity, respect, and compassionate support for patients with endometriosis and their loved ones.

I am honored that Endochick asked me to write this letter because it gives me the opportunity to publicly acknowledge her hard work and dedication to the endometriosis cause. Her passion and determination to support and educate the community about endometriosis are unmatched. Her service to the endometriosis community is invaluable. She is a role model to others. She balances life as a college student, mother, wife, writer, and volunteer with grace and wit. Her blog helps many.

Sincerely,


This post was written a couple of weeks ago but I'll include the last section here to remind people about our awareness work for endometriosis on twitter...

Using twitter for promoting Endometriosis Awareness Month:

Endochick coined a slogan tonight that we would LOVE for people to start tweeting and retweeting in honor of Endometriosis Awareness Month in March:

Endochick's slogan is:

MARCH BLOGGING MADNESS FOR ENDO AWARENESS!!!!! #endo

I sent numerous tweets tonight like this:

Endochick's brilliant idea MARCH BLOGGING MADNESS FOR ENDOMETRIOSIS AWARENESS! Great slogan. Who needs basketball? Pls retweet!#endo

This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.

Alicia's Adoption Adventure Raffle Ticket Giveaway # 1!

For a long, long time now I have been trying desperately to figure out how to help my friend Alicia in her quest to become a Mommy. Here is my chance to finally DO something to help her!!

Would you like a chance to win a $40 gift card to Target while helping my dear friend Alicia raise money for her adoption fund????

First, here is some background... I met Alicia through my local endometriosis support group. She is one of the sweetest people I know! She works as a nanny. That means she sees beautiful children all day while she dreams of having her own. Just try for a moment to imagine that!

See Alicia, Josh, and their beloved pets!

Alicia is an endometriosis patient who has had years of infertility. She has had multiple miscarriages as well. She is currently undergoing hormone treatment to try to get pregnant. She and her husband are also pursuing a foster-to-adopt method of adoption.

For months and months, I have wracked my brain trying desperately to figure out a way to help my friend! Offering words of comfort can only go so far. They don't change the fact that these two wonderful people and their pets would love to have some children with whom to share their love!

Alicia's friend Ashley had the brilliant idea to create an adoption fund. Apparently, adoption costs can range from $8,000 to $100,000. (See Alicia's blog for more information).

Finally, I have something I can DO to help my friend who has been through so much!

So, sadly, adoption is very expensive! Alicia and her husband desperately want to be parents and have so much love to give!!! To read more about Alicia's story, click below. (This will also tell you more about the Adoption Adventure Raffle Ticket Giveaway)...

Let's fill this house!!



I never do raffles. So bear with me because this is a special exception for my friend who I have been trying desperately to comfort/help in some way... I finally have a chance to DO something to help her become a mom!!

Alicia's Adoption Adventure Raffle Ticket Giveaway # 1!

Rather than just ask you to link to her site and check it out, I want to take it a step further and post her Adoption Giveaway here too. Whatever will give her raffle more visibility!

I should mention that I have never done a raffle like this before and very likely will not do so again. I am doing this for my personal (in-person, not just online) friend. (Hint hint... I would really appreciate if no one asks me to post their cause because I have no plans to do this for others)!! I am doing this to help a friend. If I ever do a raffle again, it will my something I initiate. So PLEASE do not submit any causes to me. I won't be posting them.

Per the instructions on her site, here is how you enter for the raffle for the $40 gift card to Target (plus some other surprises)...

Alicia's instructions say:

To enter you click below and donate $5. For every $5 you will receive one raffle ticket with your name on it put into the "hat". You will need a paypal account for this. If you don't have a paypal account you can email me (yayaorangenanny@yahoo.com) to find out about mailing check or cash.



For those who missed my recent post about Alicia, here is a reprint of that post. It will help you get to know Alicia a bit. She is helping so many infertile patients and has become quite an advocate!

---------------------------------------------------------

Here is the reprint of the previous post. I'm reposting her picture in the reprint and this story of her new Mommy Wannabe Club to remind you that we are talking about a real person here who has done so much to help other infertile patients!!

Some of you may know her by her nickname ("Yaya"). I first met Alicia through my local endometriosis (in person) support group. She is a fellow blogger and a strong, inspirational woman who works intently at advocating for patients with a history of infertility and miscarriages/pregnancy loss.

Alicia's passion, drive, determination, caring, humor, and compassion have attracted a flock of readers to her blog. She is helping great numbers of people. It is an honor to call Alicia my friend, to learn from her, to watch her advocacy efforts blossom, and to witness the multitude of ways she is helping others!

She is also becoming a great source of information on adoption and the foster-to-adopt process. Her blog covers all of these issues and much more.

Here is a brief biographical sketch about Alicia from her blog profile:

"Read along in my quest to become a Mommy, one way or another. It's been 6 years and several miscarriages, but I'm not giving up!"

My friend Alicia of the blog Yayastuff has launched a new venture!


Visit Mommy Wannabe Club


She has started a social network called the Mommy Wannabe Club.

Here is her blog post about it:

Wednesday, December 31, 2008 Mommy Wannabe Club

Alicia asked me if I would help her get the word out about her new club. I am honored to assist her efforts in any way I can!


View my page on Mommy Wannabe Club

Perhaps some of you reading this may be interested in joining?

Thank you Alicia for everything you do!!!

This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.

Endometriosis Blog: More Information About Interstitial Cystitis Awareness Week

Here is more info on interstitial cystitis that was just emailed to me today by my local IC support group. Just click the links below for more information. Everything below is copied straight from the email I received:

---------

There are a lot of good links here, but you need to go to each website to have them connect.

Copied directly from the IC Network’s email...

Interstitial Cystitis Network

It's IC Awareness Week

Please join us in celebrating Interstitial Cystitis Awareness Week 2008, a week full of activities to help raise awareness for this little-known bladder condition and recognize the challenges of living with IC. This year’s theme is “When the going gets tough, could it be ‘123 IC’? Living with IC is tough. People with this painful and little-known condition need support and understanding. By increasing awareness of the symptoms most commonly associated with IC – Pain, Urgency, Frequency – which we call “the 123 of IC,” we aim to help people ask “could it be IC?” sooner.

This week, the National Association of Nurse Practitioners in Women's Health (NPWH), the Interstitial Cystitis Network and Ortho Women's Health & Urology invite you to participate in the following activities:

MONDAY, October 20

• A brand new documentary on interstitial cystitis, produced by Healthy Body Healthy Mind, will begin broadcasting on PBS stations across the country (PBS), a follow up to a documentary produced a few years ago. It will feature David Kaufman MD, Jeffrey Dell MD and IC patient spokesperson Terry-Jo Myers. Contact for your local PBS station for broadcast times or visit the Healthy Body Healthy Mind. You can also catch a highlights of the documentary in podcast form at: All About IC.

• “123 IC” contest winners & 2008 IC Ambassadors announced on All About IC

TUESDAY, October 21

• IC Week Podcast: “Interstitial Cystitis 101”

WEDNESDAY, October 22

• IC Week Podcast: “Talk to your healthcare professional when the going gets tough” with NPWH’s Susan Wysocki on All About IC

THURSDAY, October 23

• IC Week Podcast: “When the going gets tough, don’t let IC isolate you!” with ICN’s Jill Osborne on All About IC

FRIDAY, October 24

• Check out real patient stories and encouraging words on All About IC

For more information, please visit: All About IC. Please check out our Facebook and MySpace pages.

Don’t forget to pass this on and help to spread the word!

Ortho Women’s Health & Urology sponsors this week to help raise awareness about IC.

Bring IC Awareness Week To Your Local Community

A formal press release has been created for media outlets. Click here to view! I encourage each of you to share this by email with your local newspapers. Ask the health or lifestyle editors if they will do a story on IC in your community and, better yet, consider sharing your personal IC story with them. If you get interest, please let the editors know that the ICN would be happy to provide quotes, background information and more to help make that story a reality. They can contact Jill directly at: jill@ic-network.com or by calling (707)538-9442.

IC Support Leader Recognition

IC Awareness Week is also the perfect opportunity to express our thanks to those people who have made our journey so much easier, the local IC support group leaders. Talk about unsung heroes. IC support group leaders often work, with little or no help, to make meetings happen in their communities. They spend hours with patients in need on the phone or at the hospital. They raise awareness with their local newspapers. The advocate for the needs of IC patients with local doctors and the medical community. All for no pay and with little, if any, recognition. They are, in our opinion, the most important part of the IC community because they work at the local level and directly with patients.

When a support group leader finally retires, we have to make sure that they know just how important their efforts were. Case in point and one of my personal IC heroes, Molly Glidden, long time Boston support group leader who is stepping down this month. I’d like to take a moment to say “Thank You” to Molly for being such a great friend, for always being willing to help so many other patients and for working with me, behind the scenes, to offer support to some patients who were very, very ill. Molly is the epitome of a kind soul and she, along with countless other past and current support group leaders, deserves our recognition for a job very well done. Thank you for everything you’ve done Molly. You’re an IC hero!

We'd also like to say a fond farewell to Alice Terry who has, for many years, run the IC Support Group of Australia. She published their national IC newsletter and helped spread the word about IC throughout that country. That group is now being run by Dr. Katya Buc Stooke (Contact details below).

So please join us in using IC Awareness Week to thank your local IC support group leaders!! Give them a call, send an email, card or flowers. Better yet, ask if they can use some help in 2009! Remember, they can’t do it all by themselves. The more hands and minds involved the better!"

AND THIS....copied from ICA’s email news:

The website address follows:

Interstitial Cystitis Association

"The Interstitial Cystitis Association (ICA) would like to inform you about three exciting events sponsored by other groups that are taking place in the coming weeks. While these are not ICA-sponsored events, we thought these activities might be of interest to you.

Interstitial Cystitis Awareness Week 2008 October 20 - 24, 2008

The National Association of Nurse Practitioners in Women's Health (NPWH, a non-profit organization), Ortho-McNeil (the makers of Elmiron), along with the Interstitial Cystitis Network (ICN, a for-profit publishing company), invite you to participate in a week full of activities to help raise awareness for IC and recognize the challenges of living with it.

Click here to find out more about the 123 IC Campaign."

This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.

Endometriosis Blog: How Finding The Endometriosis Association & Participating In Endometriosis Support Groups Helped Me & Made Me A Volunteer!!

We’ll call post this “Part Two”:

I will pick up where I left off with the TUESDAY, AUGUST 5, 2008 Endometriosis Blog: My Personal History As An Endometriosis Patient “cliffhanger” post.

Here is where I left off:

+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
So please stay tuned to find out how The Endometriosis Association helped me to learn about the illness, get needed support, and feel less alone!!!
+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

If you have not yet read the August 5th post, you may want to read in reverse chronological posting order so that things are in context!

So once I had found the contact information for The Endometriosis Association in the Barnes & Noble bookstore, I went home and called them immediately. At that time, there was a phone number specifically for people who were new to The Endometriosis Association that took messages for call back. (I believe that there is just the main number for The Endometriosis Association now)…

The Endometriosis Association can be reached at:
Phone:(414) 355-2200
Website: http://www.endometriosisassn.org/

I PERSONALLY HAVE FOUND A WOMAN NAMED SHELLEY HOUCHIN TO BE EXTRAORDINARILY HELPFUL AND SUPPORTIVE! SHE IS THE SUPPORT PROGRAM COORDINATOR AT THE ENDOMETRIOSIS ASSOCIATION HEADQUARTERS. I WOULD HIGHLY RECOMMEND CONTACTING SHELLEY IF YOU HAVE ANY QUESTIONS ABOUT ENDOMETRIOSIS SUPPORT GROUPS OR THE ENDOMETRIOSIS ASSOCIATION IN GENERAL. THIS WOMAN IS VERY PASSIONATE ABOUT HELPING ENDOMETRIOSIS PATIENTS AND IS A FANTASTIC RESOURCE! SO IF YOU CALL OR EMAIL THE ENDOMETRIOSIS ASSOCIATION, JUST ASK FOR SHELLEY HOUCHIN AND SHE WILL BE VERY HELPFUL!!!

Anyway, someone called me back shortly after I left my message in 1992. The woman was very helpful! Since this conversation took place back in 1992, I don’t remember the exact details but I know she was very nice. I do know that I ended up joining The Endometriosis Association as a member. My membership meant that I began to receive The Endometriosis Association’s newsletter.

The newsletters were the first time I heard stories from women like me who were also endometriosis patients! There were letters that endometriosis patients had written to The Endometriosis Association published in the newsletters and the stories sounded like I could have written them!!

Around this time, I became aware of a book which was published in 1987 called Overcoming Endometriosis by Mary Lou Ballweg. (Overcoming Endometriosis was followed by The Endometriosis Sourcebook by Mary Lou Ballweg and The Endometriosis Association in 1995 and Endometriosis: The Complete Reference for Taking Charge of Your Health by Mary Lou Ballweg and The Endometriosis Association in 2003).

Overcoming Endometriosis, which I read in 1992, helped me to realize that there were many fellow endometriosis patients in the world. Between the newsletters and the book, I was starting to feel less alone.

Somewhere along the line it came to my attention that there was an Endometriosis Association support group right in my city. I had never been to a support group before and didn’t know what to expect! I was quite nervous about calling the Group Co-Leader but I was very ill from endometriosis and so I got past my nerves and placed the call.

I sure am glad I made that phone call!!! The Group Co-Leader was very warm and welcoming. She told me about the support group: where & when meetings were held, some idea of what meetings were like, some of her own personal experience as an endometriosis patient, etc.

IT WAS SUCH A GREAT PHONE CALL! I KNEW THAT I HAD TO GO AND CHECK THE SUPPORT GROUP OUT!

At the time I was a shy, quiet 23 year old with zero knowledge of support groups... back in 1992. The idea of going to a meeting where I would talk with people I didn’t know about my endometriosis made me apprehensive. However, the phone call from the welcoming Group Co-Leader helped a great deal! Also, I was too sick NOT to try a meeting! What did I have to lose? I knew I might very well have a great deal to gain! If the other support group members were even half as nice as the woman I had spoken with on the phone, I’d be foolish not to go!

So the next meeting night arrived. I went to the meeting by myself. This particular support group used a conference room in a hospital for their monthly meetings. Still a bit nervous, I had no doubt that I was doing what I needed to do in order to find the support I so desperately needed!! I walked into a small room with about 3 women sitting at a table. It was still a few minutes before the meeting was scheduled to begin. I believe one more woman arrived after me and then we started the support group meeting.

What a breath of fresh air!!! To sit in a room of women who all automatically “got it”, who all had some idea of what I was experiencing, and some of whom shared many symptoms with me... it was so exciting! I learned a great deal in just that first meeting. This particular group had each woman take turns (only if they chose to speak) talking about any endometriosis-related topic she wanted.

The women typically began by introducing themselves, when it was their turn to speak, for the benefit of new meeting attendees like me. Some told their “endo stories”… brief summaries of their endometriosis journeys to that point. Some talked of having trouble deciding whether to have another laparoscopic surgery or not. Some talked about prescription treatments they were on or had tried in the past. Others talked about alternative medicine (a term that was new to me at the time). It was made clear that I could just listen if I wanted to and that I didn’t have to talk.

By the time it was my turn, I was ready to talk!! I was still shy and quiet but hearing the other endometriosis patients’ stories helped me to relax and open up. I explained how I found the group, that I had talked to the Group Co-Leader prior to the meeting, and that I was very much in need of support! I explained that I had been recently diagnosed with endometriosis and was just beginning to learn about it!

The welcoming response I got from my fellow endometriosis patients was touching and comforting! I felt like I really “belonged” there and this was only my first meeting!! I was very glad I “took a chance” and “dragged myself” to that first support group meeting.

From that point on, I went to every monthly meeting I possibly could! In fact, I scheduled around the meetings as best I could. I was working many hours at the time and it wasn’t always easy to fit the meetings into my schedule. I did my best, though.

I MADE TIME FOR THE SUPPORT GROUP MEETINGS!!!

The support group taught me so much and so quickly! It was a whole new world! I didn’t feel like it was “me against the world” anymore! I finally knew the name of my illness, I was learning more about it rapidly, I got tips on finding a better doctor than the one I had at the time (which was sorely needed!), etc. I was very pleased with the amount of information and support I received at these meetings.

Most months we had 2-6 women in attendance. That was plenty! In fact, we had to keep our turns brief enough to allow each person the opportunity to talk. The meetings were 2 hours long and we often occupied the room right until it was time for us to vacate it!

Now I will fast forward a few years. I accepted a job in a new city. While the city was fairly large, I didn’t know if there would be support group available there. I was pleased to discover that there was. Unfortunately, I didn’t make many of the meetings in that city because I was working a very unbalanced schedule of 80+ hours a week (on average). I did make a couple of meetings in that city, though.

Two years later, I returned to my hometown and resumed the meetings at the location I had originally attended. The group was as warm and welcoming as ever! My work hours were cut way back and I began attending almost-monthly again.

Now I will fast forward another 3 years. I got married & moved again to a third place. This time it was not a city. The rural area where I had moved to did not have an endometriosis support group very close to where I lived. There was a support group in the nearest city AND the one I had just left. The driving distance was a bit much for me to attend either one very regularly.

I did not even know about the endometriosis support group in the nearest city to where I had moved; I found out about it later on when I had decided to form a group closer to where I lived!

So, in the course of starting up my own group... I became aware that there was an endometriosis support group in the city closest to my new home (slightly closer than the group I had just left). I spoke to that Group Leader and I contacted The Endometriosis Association’s headquarters for information on how many women lived near my rural area and whether or not it made sense to form another support group. They sent me data on members in my area and women who had contacted EA for information. Many were "on my side of town", as it turned out.

To make a long story short, I decided after speaking to the Group Leaders from the two nearest cities that it would be worth forming a new (additional) group. The Group Leader from my “new city” was very helpful!!! She gave me lots of tips for how to start a new group! She recommended an EXCELLENT class given by the local Mental Health Association called “Facilitating Self-Help Groups”.

Please see my previous posts:

Monday, August 4, 2008 Endometriosis Blog: Self-Help Groups, Support Groups, and Volunteering Follow-up

Monday, July 28, 2008 Endo Blog: What Is “Self-Help”?? What Are The Health Benefits Of Volunteering? Why Join/Start A Support Group??

So I attended the class, talked with the Group Leaders from the endometriosis support groups on either side of me, and formed a new group.

This Friday will mark my support group’s SEVENTH anniversary! Unfortunately, the other two support groups no longer meet. Like so many groups around the country, these groups decided to discontinue their meetings.

For awhile, we had all three groups active and running. It was great because I had 2 experienced Group Leaders to bounce things off of and they bounced their ideas off of me too.

The group in my “new city” closed first. I was sad to see it close. The very experienced Group Leader had stepped down to take a job out of the area. I asked one of my most enthusiastic support group members if she’d consider stepping in so that we could keep both groups active. This would give women in the area two locations to choose from. We ran in tandem for a little while but her group closed and I absorbed any interested members from her group into mine.

Awhile later, the group from my “old city” closed down as well. This was very sad for me because that group meant so much to me! There were still members in it from when I joined in 1992! Unfortunately, the remaining group members weren’t attending often enough & regularly enough for the group to stay active.

This left me with the only active group in an area covering two moderate sized cities and their surrounding areas. I was more determined than ever to attract new members and keep my group from closing down as the other two had.

I am still in touch with the former support Group-Leaders from both cities!

It has been a couple of years since then. Our smallest meetings consist of two people. Our biggest meeting ever had 15.

EVERY SINGLE MEETING IS WORTHWHILE, REGARDLESS OF HOW MANY WOMEN ATTEND!

I had a couple of “no show" meetings about two years ago. That was when I implemented a new policy that if I didn’t get at least ONE person to RSVP that she was definitely planning to attend, I would simply cancel the meeting. I learned that sitting in an empty room waiting to see if anyone will show up is no fun. I haven’t had a “no show” meeting since!! Either we get 2-5 women (at an average meeting,including me) or I cancel 24 hours in advance with the building/meeting room where we meet. Problem solved!

I encourage you to read the related posts I mentioned above. Who knows?? Someone reading this may get inspired to find a local endometriosis support group, attend meetings, OR start a group if there isn’t one that is nearby!!

I have also created a poll regarding self-help groups and support groups! Please see it in the right sidebar of this blog and exercise your right to vote for the option that applies to you!!

I hope that SOMETHING in this post, in the other two recent posts about self-help groups/support groups/volunteering, and/or in the “PART ONE” post to this one: TUESDAY, AUGUST 5, 2008 Endometriosis Blog: My Personal History As An Endometriosis Patient will be helpful to ENDOMETRIOSIS PATIENTS AND OTHER CHRONICALLY ILL PATIENTS IN NEED OF SUPPORT!!!

You may have an appropriate support group in your backyard and not even know it!!!

I will close this post with a quote that was recently brought to my attention. I believe it’s perfect for this post:

“One of the most important capabilities of community self-help groups is that ordinary people can develop such groups in their local communities when none exist, and subsequently their group usually serves as an extraordinary resource to many in that area for several years. I still find it amazing that to start a group, a person doesn't need a grant, an agency, or even an office - just the inspiration and a few other people who share their experience and hope. What significantly helps in providing such inspiration is a person's knowledge of an existing national organization or a model group, which can provide them with basic information so they don't have to ‘re-invent the wheel.’ "

This quote is attributed to E. Madara, "Mutual Aid Self-Help Group Developments” Community Psychologist, 39 (3), Fall, 2006, p. 21.

This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.

Endometriosis Blog: Obituary Of An Endometriosis Support Group Or Beginning Of A Better System?

Fasten your seatbelts! This will be a long post because it's about a topic very near and dear to my heart. So please bear with me!! When I get emotional, I get even wordier than usual (hard to imagine, I know)! :)

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If you're having trouble slogging through this whole post, please consider checking out the 5 related links near the end of this post. I believe many readers can relate to them!
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Before I begin with a bunch of questions (questions I'll pose below) or proceed to write my local endo support group's "obituary", I want to begin by focusing on the positive!!!

I AM VERY THANKFUL AND GRATEFUL FOR HAVING HAD THE OPPORTUNITY IN THE LAST 7 YEARS TO MEET AND GET TO KNOW SOME OF THE MOST FANTASTIC WOMEN I HAVE HAD THE PLEASURE OF MEETING ANYWHERE, AT ANY TIME, IN MY LIFE! I HAVE FOUND NUMEROUS ROLE MODELS WITHIN MY LOCAL ENDO GROUP: ROLE MODELS FOR COMPASSION, "GIVING BACK", SHARING THEIR PERSONAL STORIES FOR THE BENEFIT OF OTHERS, ETC. I AM SO HONORED TO HAVE MET SO MANY OUTSTANDING WOMEN WHO ARE COURAGEOUS, STRONG, THOUGHTFUL, AND WHO PERSEVERE THROUGHOUT OFTEN DAUNTING SITUATIONS AND DEBILITATING SYMPTOMS. THESE WOMEN ARE INSPIRATIONAL AND HAVE ENRICHED MY LIFE AND THE LIVES OF OTHERS IN SO MANY WAYS!!!

Is online support the "wave of the future" (as some have suggested to me in recent weeks)? Can online support replace in-person support? Does it have to be either/or???

Or is a *combination* of online support and in-person support the optimal situation??? (My personal opinion on that last question is that a combination IS best when at all possible... but I'll get into more details below. In-person support is REALLY powerful. Having experienced both, I see the value of each).

Are in-person support groups phasing out in general? Or does it depend on factors like geographical area, the condition/illness requiring support, the nature/severity of the illness/condition/situation for which the support provided by a group, gas prices to get to meetings, people's work schedules, people feeling too overwhelmed or exhausted to add one more thing to the schedule(!), or a combination of these and other factors?

First let me share some fond memories. Our group has helped many women find ---

+ EACH OTHER!!! I have met some of the most wonderful, caring, supportive, well-informed, strong, compassionate women in our support group that I have ever met anywhere in my 39 years. I will always treasure the special moments of shared support, compassion, information-sharing, and grace that I have witnessed in the past 7 years. Our support group has helped many women in meetings, between meetings, in person, by phone, and via email. The last phase of this in-person support seems to have led me here. While I didn't know it at the time that I started this blog in June, it may well provide online support to those who cannot attend in-person meetings regularly (for a variety of reason which I'll talk about separately).

+ comfort, support, healing

+ the ability to find high quality doctors in our area

+ validation/understanding/decreased isolation or loneliness

+ links to other support groups relevant to their condition (i.e. fibromyalgia, interstitial cystitis, and infertility support groups)

+ articles about endometriosis and related conditions, relevant news stories/research

+ links to other helpful resources relevant to our group members (i.e. support for group members who have gone through breast cancer... which endo patients are at increased risk for)

+ opportunities to connect with other women who share much in common with them (pain symptoms, marital strain, infertility, micarriages, etc)

+ a venue for learning about alternative treatment options that might not have been discovered otherwise

---

Obstacles for in-person support...

Here are the most common reasons endometriosis patients have outlined for me as reasons its difficult to attend support group meetings:

(1.a.) TIME. Time is so precious nowadays for everyone. It's extremely difficult for endo patients to simply add one more thing to their schedule.

(1.b.) I am listing "TOO SICK TO ATTEND" as tied for first place because it is just as common a reason for women not being able to attend meetings!

(2) Women who are feeling better and would like to stay on the mailing list but do not attend meetings regularly because they don't need the support currently. This is understandable! (Who wants to drag herself to a meeting when she's feeling better when she could be at home spending that time with her family, curled up her in PJs reading, watching TV, etc.)

(3) Patients whose needs have essentially been met and are doing pretty much OK but wish to remain on the mailing list to "stay in the loop"... and just in case they should need support/info down the line.

(4) Women who had quite a drive to meetings and either have issues with drowsy driving associated with medications, have trouble with gas prices making the drive prohibitive, etc.

(5) Patients who have been fortunate enough to conceive sometimes have difficulty obtaining childcare so that they can attend the meetings.

Within the group of women who find time their biggest challenge for attending in-person meetings... there are many subcategories. Women have work scheduling conflicts, women have other commitments on the same date, women need that time during the meetings to recover from working all day and adding a meeting after a full work day is totally beyond their capabilities or just plain impractical, etc...

This leads into category (1 b). Many women are simply TOO SICK to make it to in-person meetings. This has been the most heartbreaking part of the last 7 years for me. The very women who express the GREATEST need for support and who are VERY interested in attending meetings often are simply to sick to attend. Over the last 7 years, I have tried to be as available as possible as possible to group members between meetings because I knew that some patients simply can't make some or even any meetings due to the very illness for which they desperately want/need support.

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As far as the questions I posed at the start of this post, I can't answer all of these questions. What I can do here is simply share the story of one local endometriosis support group. Much of our local support group's story has been covered in previous related blog posts. I'll list these at the end of this article and I strongly encourage readers to check them out! There is a great deal of information in them that I believe readers may find interesting and/or helpful regardless of whether they have ever or will ever participate in "in-person" support groups!

There's a great deal to cover here with the group having provided support to local endometriosis patients for 7 years. If I cover it all in this post (especially when I detailed it previously anyway in other posts) this post will become WAY too long. So I'll skip the details for now and refer readers to those posts for more information about the wonderful things our group members DID accomplish while we still had regular monthly meetings.

While I will miss having monthly meetings and the enormous opportunity they provided to help others and to learn a great deal from fellow endometriosis patients, I realize that sometimes "good things must come to an end". While I accept the fact that we will no longer have monthly meetings at the location & time we've met for 7 years... I have faith that we have a core of very interested support group members who will find more creative and flexible ways to have some in-person support... just not necessarily as often or in as structured a fashion.

I am at total peace with the changes in how we'll proceed from here and (despite my gloomy post title!) that this change is for the best and I'm actually feeling relief that I no longer have to struggle to try to "hold the group together" in its previous form. Group members know where to find me and now have some additional contact info to communicate with other fellow group members who have shared their contact info. I have done everything humanly possible to keep the group afloat in "traditional form"... especially since the endo groups on either side of me closed within the last few years and our group has been the only remaining endo support group in our part of the state.

I just keep telling myself that a former endo support group leader who sent me a compassionate, thoughtful email about the potential "closing" of the local group had a good point... that online support (blogs like this, messages boards, websites for organizations who deal with endo support, research, information, etc.) may truly be the "wave of the future".

My personal belief is that some occasional in-person support is a fantastic addition to the great online support available in so many formats! I have felt the positive energy in the room when the group members present have "aha" light bulb moments (as Oprah would call it) or when group members realize, "oh, she 'gets it'... " --- or "these people really 'get' what I'm talking about"!

I keep local group members' contact information 100% confidential and always have. With the traditional group format unraveling, I have been asking interested group members for permission to share their contact info with the group. In this way, the remaining "core" of interested group members can remain in contact with each other without me necessarily needing to be the "gatekeeper".

This will assist me in engaging in more self-care/less time trying to "save the group" and will allow for a better sense of "ownership" or belonging for the core members to communicate with each other - and - for all of us to divide the responsibilities of organizing any in-person, informal meetings.

We can meet 1:1 or in small groups at locations, dates, and times of the subgroup's choosing. We can have the meetings really informally at coffee shops... just hang out and chill. Like a "girls night out" where we happen to all have endo and we spend some time talking endo and some time just having fun.

In the last few weeks, it became apparent that our group was potentially heading for "extinction" in its current form and I sounded the "alarm bells" to let the group know where things were potentially headed... at least regarding the format we had become accustomed to.

I went through feelings of sadness and loss. I know there is a need for a group like this because I got 2 calls last week from new members. Calls don't always translate to meeting attendees, though.

At the same time our current meeting schedule is just impractical (on many levels) and it's not fair to the wonderful library that has provided free meeting space for 7 years to call and cancel as many meetings as I have in the last year when the library is turning others away from using the room.

However, in addition to feeling sadness and concern that women who haven't already found our group may have a much lower chance of finding us now, I have received some unbelievably supportive and heartwarming emails and calls from local group members. This has lessened the blow of the group "dying" (at least "dying" from its current form of monthly meetings). With all of the great suggestions and supportive/helpful comments I have received in the last few weeks, I know that existing support group members who care to stay in touch will and that those whose needs have been met or who don't find attending in-person meetings practical for whatever reason WILL still get the support they need within our community.

The saddest part for me is not knowing how to reach out to those who hadn't yet found us. For example, women who have not yet been diagnosed and who will look for an endo support group in the future in this area won't be likely to find us. This was hit home recently when the local city newspaper printed its quarterly "health section" newspaper pullout that features support groups like ours (for free) to inform the community.

As I touched on earlier, I got calls 2 days in a row from potential new group members recently and had to explain that I wasn't sure if our next meeting was going to happen or not. (I had called an "emergency meeting" to discuss our group's future. It was to be held tomorrow night. I have cancelled it). While a couple of group members had replied "maybe" to the meeting invitation RSVP, a handful had said no, none had said yes, and the vast majority hadn't responded at all.

I just knew it was time to discontinue our monthly meetings. This doesn't mean we can't "morph" into another format. I am hopeful that the small but determined core of local support group members who have contacted me will find creative ways of staying connected.

I have received some VERY thoughtful, considerate, compassionate emails and calls from local support group members who wish to continue to stay connected with other endo patients in the area, who reassured me that they have found the group very helpful, who made suggestions such as virtual meetings or meeting at a coffee shop on a quarterly basis, who like staying in the loop with the emails I send, etc.

We may not meet every month in the future and we may not meet in the same location as before. However, based on the feedback I've gotten from our group members I am confident that there is a relatively small but interested core of our local support group members who will stay in touch, continue to network with each other, keep sharing our success stories & our challenges, and continue to belong to a group of women committed to staying connected.

OK. Now I'm going to do the "obituary" of our "traditional in-person monthly support group".

Then, more importantly, I will share hope for the future of continuing in-person support as a supplement to online support and and as adjunct to the information provided by healthcare providers.

We'll quickly cover the past first and then get into the future. I'm determined to focus on hope and positivity once I get through this quick "obituary". I just need the catharsis of getting through the sad part before I can move onto the happy/hopeful part. So bear with me.

On August 8, 2001 our local endometriosis support group held its first meeting. Since then we have helped dozens of endometriosis patients in our community. Like so many support groups around the country, we have had our struggles over the years with low turnout but have managed to stay active with monthly meetings for 7 years.

While many women expressed great interest in our group, our monthly meetings got smaller over the years. The number of group members on our mailing list went up and down over the years (people moving away, new members finding our group, women deciding they no longer needed support, women returning to group meetings when their symptoms flared or they needed to make decisions such as whether to have surgery) but our mailing list averaged about 40 women in the last few years. (We started out with about 20 women on the mailing list back in 2001). That's not bad for a city the size of the area this group has served.

I believe this may well be the death of a traditional support group and the beginning of a new era of support... My hopes for the future of our support group restructuring into something more workable for its members are strong.

I mentioned above that I would be sharing HOPE for the future of continuing in-person support as a supplement to online support and and as adjunct to the information provided by healthcare providers.

My personal belief is that the majority of Traditional Western Medicine healthcare providers are not GENERALLY inclined to provide much, if any, information regarding alternative medicine options. One of the biggest benefits of our group for members was access to high quality info on alternative treatment options. Group members learned about acupuncture, physical therapy for pelvic pain, Chi Nei Tsang, nutritional changes that might be helpful, homeopathy, aromatherapy, info on environmental impacts on endo patients and their fertility, the benefits of massage therapy, and many other modalities that their healthcare providers might or might not have made them aware of. I believe alternative medicine was one of the most interesting topics discussed in our meetings. I certainly got great feedback from members who tried new treatments and got great results.

Please see the article below. It contained FIVE related articles to this one.

Friday, August 8, 2008 Endometriosis Blog: SEVENTH Anniversary Of My Local Endometriosis Support Group!!!

The 4 links within the article listed above are:

Monday, July 28, 2008 Endo Blog: What Is “Self-Help”?? What Are The Health Benefits Of Volunteering? Why Join/Start A Support Group??

Monday, August 4, 2008 Endometriosis Blog: Self-Help Groups, Support Groups, and Volunteering Follow-up

Tuesday, August 5, 2008 Endometriosis Blog: My Personal History As An Endometriosis Patient

Thursday, August 7, 2008 Endometriosis Blog: How Finding The Endometriosis Association & Participating In Endometriosis Support Groups Helped Me & Made Me A Volunteer!!

I have been a member of a "traditional/in-person" endo support group (here or in other cities where I lived previously) since 1992, when I was first diagnosed. I will miss the monthly meetings but I look forward to staying in touch with the numerous amazing women I've met through the group. These are women I almost certainly wouldn't have met any other way. Many are lifelong friends now!!! While I will miss the structure of monthly meetings, I have every confidence that many of our current group members WILL stay connected and continue to give one another high-level, compassionate, meaningful support.

So with this "endometriosis support group obituary", I'm sad but I'm also very hopeful. This is a bittersweet time. No matter how frequently, or infrequently, I have contact with members of my wonderful local group... I know we've helped many people. In addition, I know this blog will continue to help people online. Not only does this give support to women without them having to leave their homes but it reaches a worldwide audience and has already given me an awesome opportunity to connect with awesome readers of this blog and fellow bloggers (chronically ill or otherwise)! I am very grateful on so many levels.

I encourage readers to comment on this post! Maybe your local support group is struggling and you are looking for ideas. Maybe you have used online support only and have never tried in-person support or it's not available in your area. Maybe you have used in-person support in the past but haven't used it recently. Maybe your local group (like so very many endo groups) closed due to low attendance. I'd love to hear your feedback!!

In a funny way, I'm actually looking forward to this new chapter. I truly believe this is what's meant to be at this time and I'm embracing the opportunities it provides. I have taken some time to accept it and make peace with it and I really do see it as an opportunity rather than a "death" of our group... in spite of my post title. That title was a reflection of the sadness factor but I'm honestly looking forward to what good can come out of this transition for our local group. Who knows where this could lead? Maybe having a more flexible time/date/location based on who wants to attend a particular meeting will increase participation? You never know!

THANK YOU to my local support group members for being so thoughtful, informative, strong, and supportive. You all have a special place in my heart!!!! :)

I have loved the opportunity to meet so many incredible women through this group!!!

Nothing will ever take away the amazing, close friendships I have made with other endo patients right here in my community. Their kindness and selflessness are unmatched and I am so very grateful!!

***
"Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it's the only thing that ever has".
-- Margaret Mead
***

Our group has improved the lives of many women and their loved ones! We should look at the positive things we've accomplished AND look ahead to the additional positive things we'll accomplish in the future!!

This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.

Multiple Chemical Sensitivity: How You Can Help Patients With This Often Debilitating Condition!! (UPDATED With USA Today article)!

Recently, I started communication with a lovely woman named Susie Collins. Susie writes The Canary Report about MCS (multiple chemical sensitivity).



I have MCS and I am very grateful and pleased that Susie found my blog. We have been corresponding ever since. Her site is nothing short of amazing!

I have MCS. Everyday items such as perfumes, cleaning products, and fragranced soap can cause severe reactions. On more than one occasion I have fainted in stores with new carpets. (I'll have to create a whole post just about all of my carpet-induced fainting episodes).

While you haven't heard me talk about MCS very much, this does not mean it doesn't severely impair me. In fact, it may well be the most challenging illness I have! It affects me every day. Every time I leave my house, I have to be on the defense against chemical reactions that can make me nauseous, dizzy, lightheaded, and even make me feel faint (or really faint)!

I can quickly develop an intense headache from exposures to chemicals that ordinary people do not react immediately to. (These chemicals aren't healthy for ANYONE. Some, like me, are just much more sensitive to them). I was diagnosed with MCS in 1993... shortly after my endometriosis was finally diagnosed. It affects me profoundly.

I ask readers here to please take just a moment to look at Susie's article:

What is Multiple Chemical Sensitivity?

She explains MCS better than I probably can so I'd greatly appreciate if you'd look at her article before I give you a real-life example of an episode where MCS affected me and my family.



Again, before I relate to you a story about ozone-emitting "air cleaners", I strongly urge you to just take a look at what MCS is by peeking at Susie's amazing article listed above.

It helps explain what MCS is. It includes a moving video that really captures just how serious MCS can be. (Thanks for sharing this YouTube video on your site, Susie)!



If you ever wear a fragrance, purchase fragranced soaps, or use cleaning products that are not "Earth friendly", you could be making someone near you sick. This sounds dramatic but it's true! I know because I'm one of the ones reacting to such items. (Yes, no matter how many times you wash your hands after using cleaning products... I can still smell the residue on your hands of items like bleach). So the products you use affects not only the environment but MCS patients near you. MCS is a terrible condition.

I will be writing much more in subsequent posts about MCS. I wanted to start by referring you to Susie's excellent article on what MCS actually is to start. Then I will talk about the dangerous ozone-emitting "air cleaning machines" that you will want to avoid purchasing (items that are heavily marketed at this time of year as holiday gifts to help your chronically ill friends and relatives. The false claims of the products are astounding. Again, here is Susie remarkable article on MCS to start:

What is Multiple Chemical Sensitivity?

Now on to my "air cleaner" story. This time of year in particular, many companies are pushing "air cleaning machines" as holiday gifts. Many claim to help asthma patients. In fact, these machines put asthma patients at greater risk! These are not just false marketing claims. These are dangerous statements that potentially put chronically ill patients at risk of worsening the very conditions these machines are purported to treat!

Here is an article Susie wrote that grabbed my attention since I had a "run in" with such an "air cleaning machine": Warning: Avoid ozone generating air machines.

After receiving such a machine as a gift from generous relatives who saw it advertised as helping asthma, I noticed an odd smell emanating from the machine. Here is an excerpt from a comment that I placed on Susie's blog post about this last night:

Susie,

Wow!!! Here is my story with these atrocious machines.

A couple of years ago, my family received an ozone-emitting "air cleaning machine" from thoughtful relatives. My daughter has asthma. The outside of the box contained all sort of claims stating or implying this machine to be HELPFUL for asthma patients. Since I have MCS and she has asthma, they got this to try to help us “clean the air” in our house. This was a holiday gift. We opened it and set it right up. Since my daughter is the one with asthma, we set it up in her room. (I yanked it within 24 hours... more details coming up).

The very first night we did storytime before bed (after setting up the machine in her room), we sat in the rocking chair next to it to read bedtime stories. I immediately smelled an odd odor which I quickly traced to the “air cleaning machine” and turned it off.

After tucking her into bed, I dove into the packaging material, instructions, etc. I wanted to investigate this machine before hitting the on switch ever again. As we joke in my house, “my nose is never wrong”. After MANY hours on the Internet, I discovered what you are reporting here after combing through site after site.

One of the first things I did was look the product up on Sharper Image (the seller) to verify that I was searching for info on the correct machine. The machine was listed as being VERY expensive and I felt badly when I saw how much it had cost! I was on a mission to see what this expensive machine claiming to help patients of various illnesses actually DOES! To make a long story short, what I found was NOT pretty.

Everything you (Susie) said in this article is aligned with what I found after researching it on the Internet for many hours a couple of years back. I read through everything from Consumer Reports to reports from government agencies to message boards about the apparent tall tale that the Sharper Image site listed online. As you have beautifully laid out, these machines not only DON’T live up to their claims to “clean” the air but they actually emit HARMFUL ozone!!

OK. I had read enough. This machine was not going to be used in my home ever again!!

After presenting my husband with the convincing evidence that this machine didn’t help AND did hurt, he agreed we’d stop using it. What next? Should we tell our relatives the truth about the machine and risk hurting their feelings hurting their feelings by rejecting the holiday gift they so generously picked out for us to improve our health? We didn't know what to do.

Anyway, there was lots of proof this machine was hurtful rather than helpful!

In addition to my Internet research about this product, I had called online healthcare professionals. I called the American Lung Association and was connected (for free) to a nurse who had special training in respiratory therapy. She advised not using the product. (Our pediatrician's office didn't know much about the product when I had called).

So, we had used it for about a day. With all of the holiday commotion, it had not occurred to me to sit down and scan the box in-depth for clues of trouble. (Besides that, the box was covered with false claims and misinformation).

If I had not had a gut feeling that the funny smell emanating from the machine spelled trouble, I might never have launched my Internet quest and phone calls for the real scoop on such machines!

This article [of Susie's] is a great service!! It’s timely (with such items being heavily promoted at holiday time... which is when my relatives bought us one).

Also, it is important for fantastic articles like this to be available so that when confused consumers go on their “information searches” (as I did), they will see ACCURATE info. (I had seen message boards and reviews. All either rated it 5 out of 5 stars or ranked it a 0 or a 1 while going on to rip it apart and tell the truth about its dangers. (So I’m guessing that some of those 5 star reviews were planted by reps of the companies who make obscene profits from these dangerous machines but maybe I’m too cynical).

All I know is that everyone online seemed to “love it or hate it”.

THANK YOU for this article!! It is so great to see the FACTS about this getting out to the public. A very timely piece!!

Readers here: Please do me the honor of checking out Susie's outstanding site that is educating and helping many MCS patients, myself included!

Here's that address one more time:

The Canary Report

So how you can help MCS patients? BELIEVE THEM!!! LISTEN TO THEM AND TAKE THEM SERIOUSLY... THEY ARE NOT IMAGINING MCS!!

This holiday season, when you dress to go to family gatherings, consider not applying that perfume or cologne. It makes some of us feel very, very sick!

This is a real and serious illness that is very misunderstood and not in patients' imaginations. I know from personal experience!!

UPDATE... USA Today article...

Ionizing air cleaners get zapped

This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.

Endometriosis Blog Seeks Guest Bloggers On Health-Related Topics

Is anyone out there interested in guest blogging about a medical topic on this blog?

Currently I'm seeking individuals who would like to guest blog here. The topic would need to be health related but not necessarily about endometriosis. For example, you may write a blog for a different chronic illness related to endometriosis. Perhaps the chronic illness you write about is even correlated to endometriosis in studies. It would be great to have a guest blogger tell us his/her experiences on a health related topic such as this. Your post does not necessarily have to be about endometriosis or an endometriosis-related illness.

If you are interested in submitting a request to be a guest blogger here, just email me at endendo@frontiernet.net. Please specify what topic you'd like to write about.

I believe this is a wonderful way to get information from other sources on this blog. This will strengthen Jeanne's Endo Blog and introduce diversity to the writing style presented here as well as allow readers here to see things from another vantage point than just mine. Perhaps you have a personal experience you'd like to share about how your illness has impacted you? Maybe you have a success story to share. (Please stray away from any advertisements for specific products or prescription brand names and cover such things in broad terms).

This is an exciting opportunity to share your ideas with readers here.

You may be wondering, "what will I get out of this"?

Within your guest blogger post, you will be able to promote your own site. This stands to increase traffic to your own website or blog. I encourage you to provide some basic information about yourself, your illness, and how it impacts you. This will give you the opportunity to write about your own site and help more people than the readers of your site. It will allow you to reach out to a new audience.

Again, the topic idea you submit needs to be a health related one. Please don't bother writing up your post just yet. If you could please send me your idea(s) on what you'd like to guest blog about, I will get back to you to identify how your post could be integrated to fit on this blog. (I would like to make sure that the topic is a "match" that readers here will identify with).

How to submit your idea(s):

Email me at endendo@frontiernet.net and indicate that you'd like to guest blog on Jeanne's Endo Blog. Please put "Guest Blogging" in the subject line to draw my attention to your email. I'll email you back to follow up on your submission. If your topic idea sounds like a fit for this blog, I'll post your story shortly after you submit it (based on what posts I have scheduled to publish at that time).

What I Won't Accept as Guest Posts:

Please do not submit posts that promote specific products (i.e. nutritional supplements, prescriptions by their brand name, other products that fall under the category of solicitation). The purpose of the post is to create awareness, educate readers, help patients, and promote your website or blog in the process.

For more details on my policy regarding advertisement on this blog, please see my previous post:

Sunday, June 29, 2008 Endometriosis Blog: Ground Rules for Comments, Google, and AdSense PLUS My Anticipated Response Time for Comments

This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.

Endometriosis Blog: SEVENTH Anniversary Of My Local Endometriosis Support Group!!!

On August 8, 2001 we held our first local endometriosis support group meeting.

Prior to the meeting, I had done various things to create awareness about our new group.

I hung fliers in various places (the library distributed it to every library in the county and even hung them up for me!), notified the nearest city's major newspaper to have my group added (for free since we are a nonprofit group) to their health calendar, distributed brochures to my doctors' offices, & called women whose contact information I had gotten from The Endometriosis Association (which I was able to obtain by applying to be an Endometriosis Association support group leader, getting approved as one, and agreeing to keep women's contact information completely confidential.

When I called the women on the Endometriosis Association list, I received a warm welcome. I told them about the new group and asked them if they'd like to be added to my email mailing list. Most said yes.

I used email (with a distribution list to save time and send one email to the entire email mailing list). I used email to send meeting times, location, and directions to our meeting place.

Once I had made calls to everyone on the list, I had about 23 women signed up for the notification emails. Today my email mailing list has grown to 42 women. Many support group members don't generally make it to meetings but like to get the emails to stay in the loop about endo. Occasionally I send out info on endometriosis research and links to endometriosis sites.

In the last 7 years our group has been busy:

+ Our support group was featured on the local news

+ We (some group members) emailed a major newspaper that had written false and misleading comments about fibromyalgia

+ We shared information regarding hormone replacement therapy

+ We shared information about local physicians

+ We learned of a national news story regarding disability claims

+ We shared information about other local support groups that serve the needs of our endometriosis support group members (an infertility group, an interstitial cystitis group, and a fibromyalgia group are all available in our area)

+ I emailed a link of a radio program regarding interstitial cystitis for those group members who were interested (an excellent radio program!)

+ I passed along online newsletter from the Interstitial Cystitis Association

+ We shared information about making medical exams easier (especially pelvic exams)

+ We shared information about physical therapy for pelvic pain... (Contact The National Vulvodynia Association (http://www.nva.org/) to see if your area has this type of specially trained physical therapist

+ We learned of a website about adhesions

+ We shared information about medical research studies being conducted in our community (for endometriosis and fibromyalgia)

+ We shared information about the dangers of some health & beauty products (for everyone!) - but especially women with endo (see the following website for more information: http://www.cosmeticsdatabase.com/splash.php?URI=%2Findex.php)

+ We learned about a "last resort" surgery called presacral neurectomy from a group member who had the surgery

+ We merged 2 support groups

+ We got local TV stations to agree to air endo public service announcements

+ We generated awareness about endometriosis in our community

+ Occasionally group members even brought snacks to meetings!

+ We held a fundraiser and gave 100% of the proceeds to The Endometriosis Association (with the money we raised earmarked specifically for endo research)

+ We learned that many group members have vulvar vestibulitis or vulvodynia and that many group members get terrible migraines

+ We shared information about breast cancer (melanoma, ovarian cancer, and breast cancer are more common in endometriosis patients than in women who do not have endo)

+ Some group members signed a petition objecting to "drive through mastectomies"

+ We learned of 2 websites... one about alternatives to hysterectomy and the other to support women who had gotten a hysterectomy

+ We had guest speakers speak on nutrition, relaxation techniques, Chi Nei Tsang, acupuncture, endometriosis (a gynecologist gave a fantastic presentation!), environmental concerns specific to endometriosis patients, etc.

+ A group member shared a recipe book that might be helpful for endometriosis patients

+ We organized an email campaign to FDA - to request labeling and eventual phase out of PVC and DEHP from medical devices

+ Group members supported each other during difficult times (such as surgeries)

+ We shared info with each other regarding infertility HMO coverage

+ We donated a copy of The Endometriosis Sourcebook to a public library

+ We connected group members who had similar symptoms to one another so that they could support each other and exchange information

+ We learned of a study showing that chronic pain can alter the brain

+ We discussed co-existing illnesses extensively since many support group members have other illnesses besides endometriosis (ones related to endo)!

+ We shared information regarding a drug recall that impacted some of our group members

+ We shared information on books that group members found helpful

+ We supported patients who experienced miscarriage and infertility

+ We discussed prescription treatments, surgical options, and alternative medicine modalities

+ We created a website with information pertaining to the local support group (directions to the meeting location, a meeting calendar, links to relevant websites, etc.)

+ We shared links to news stories we'd seen on TV or in print

+ Patients have gotten connected with each other between meetings to discuss one patient's vestibulectomy (while another patient was trying to decide whether to have this surgery)

+ We LISTENED to each other!

***UPDATE***

RELATED (PREVIOUS) POSTS LINKS TO THIS ARTICLE INCLUDE:

Monday, July 28, 2008 Endo Blog: What Is “Self-Help”?? What Are The Health Benefits Of Volunteering? Why Join/Start A Support Group??

Monday, August 4, 2008 Endometriosis Blog: Self-Help Groups, Support Groups, and Volunteering Follow-up

Tuesday, August 5, 2008 Endometriosis Blog: My Personal History As An Endometriosis Patient

Thursday, August 7, 2008 Endometriosis Blog: How Finding The Endometriosis Association & Participating In Endometriosis Support Groups Helped Me & Made Me A Volunteer!!

I'll end this post with a quote regarding support & self-help groups:

"Mutual support groups, involving little or no cost to participants, have a powerful effect on mental and physical health... The psychological and physical health importance of this diffuse community is striking... The self-help movement, both in face-to-face and virtual arenas, has tremendous therapeutic potential."

From American Psychologist feature article "Who Talks?: The Social Psychology of Illness Support Groups" by K. P. Davison, J. W. Pennebaker, & S.S. Dickerson, (55) 2, pp. 205-217, 2000.

This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.

Endometriosis Blog: November Is National Prematurity Awareness Month

Today I was inspired to write a post after reading an excellent article posted by Kelly Damron!

Her blog is called Twin Peas Blog and Podcast: Infertility and Premature Birth resources and experiences.

I was just reading Kelly Damron's blog post regarding the fact that November is National Prematurity Awareness Month.

I didn't realize until reading Kelly's post that November 12th was National Prematurity Awareness Day because I hadn't heard about it until after the fact!

However, again, the entire month of November is National Prematurity Awareness Month

When certain conditions get more attention and research dollars than others, it's hurtful and damaging to those who have the "under researched" issues that are less talked about in public circles.

Now don't get me wrong. I'm not advocating graphic descriptions of laparoscopic surgeries at the dinner table. What I am saying is that if a bladder cancer patient can discuss his/her condition with family and friends... then patients with endo or patients with infertility/miscarriage history and/or adoption proceedings should be able to discuss their situations just as freely... if they wish to do so.

As Kelly alluded to in her blog post, relatively little attention is given to events honoring "infertility, loss, and premature babies" and that there is much more publicity given for other conditions. This simply should not be the case.

Here are my thoughts after talking with many women who have or have had infertility, miscarriages, and had premature babies...

1) Our society as a whole doesn't know how to deal with these issues. People may gave good intentions to be "polite" and to not be "intrusive". They may avoid discussing these topics for fear of upsetting couples dealing with these issues. However, this can lead to isolation of the couple and make the healing process harder for them than it would be if they felt they could talk openly about it. While patients who go through these emotionally draining and exhausting issues all have their own ways of dealing with their situations, most that I have met WANT to talk about it.

PLEASE NOTE: For open and candid discussion about infertility, miscarriages, and starting the adoption process, please see my friend Alicia's information-packed blog Yayastuff.

Alicia's candor about the wide range of emotions she has been through on her journey is a testiment to her strength and determination. Her courage is inspiring her many readers on her blog!

2) Illnesses or conditions that affect or are related to reproductive organs tend to be less openly discussed than others. For example, endometriosis is rarely brought up in casual conversation but if a person were to talk about asthma or diabetes, the conditions would/could just be discussed openly. There are people who are uncomfortable discussing issues that make them feel awkward. It has taken years for me to do a 180 degree turn from being quiet, shy, and downright mousy about my endometriosis (and other) symptoms... to being open, candid and comfortable talking about my illnesses as if they were any other. (It took me a few years to fully comprehend that I have nothing to be embarrassed about or feel awkward about. If others don't feel self-conscious discussing their conditions, why should I feel muzzled about my health issues)???

I'm not sure if my theories answer Kelly's question or not but I have seen in working with many women in endometriosis support groups that there is often a "stigma" or a level of embarrassment that women sometimes feel when discussing "taboo subjects" such as periods, cramps, hormones, etc. This is truly unfortunate.

How can we band together to make headway on these issues if people aren't talking much about it? If the people dealing with these conditions don't feel at liberty to discuss them with anyone but fellow patients, how will anything ever change for the better as far as awareness?
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Please see previous articles I have written about the other (related) awareness days and/or weeks that I heard about in time. Thanks to Kelly, I heard about awareness month in time to post about it for November!

Related articles:

Wednesday, October 15, 2008 Stillbirth Awareness and Research Act

Sunday, October 19, 2008 Endometriosis Blog -- RESOLVE: National Infertility Awareness Week Is October 19-25, 2008 -- Reminder

Tuesday, October 21, 2008 Endometriosis Blog: National Infertility Awareness Week -- A Personal Story

This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.