'Jeanne's Endo Blog': Jeanne's Endometriosis Story For CureTogether's "Endometriosis Heroes" Book, Expected To Be Released Mid-March...

Yesterday you read Stacy's endometriosis story. It was a sneak peek at CureTogether's upcoming book "Endometriosis Heroes", scheduled to be released in Mid-March!

I have one more sneak preview of that same book. It is my endometriosis story and will also be included in the CureTogether book "Endometriosis Heroes".



This story isn't the easiest one I've ever written but I chose to write about it because I know many young girls out there are suffering! I'm hoping that sharing my story may help someone. With endometriosis, early diagnosis is important. This isn't a story you'd find in a medical textbook or medical journal. It's not a story a doctor would "forewarn" you about. It is, however, a true story. I've spoken with enough endo patients to know that similar things happen to others. While I was embarrassed at the time this story occurred, I now know that I have nothing to be embarrassed of! This is just one of the many ways endometriosis has affected me over the years. I went from age 13 to age 23 undiagnosed. This is a common time lag for endo diagnosis. There should NOT be such a lag! Endometriosis awareness matters!!

Here is my story...

My 7th grade field trip as an endometriosis patient:

It was the day we had been waiting for. It was the day for our end-of-year 7th grade class field trip to an amusement park! After months of studying hard and doing mountains of homework, this field trip was our reward. We’d been looking forward to it for months. I woke up excited and happy that the day had finally arrived. Instead of going to school all day, I was going to go on rides with my friends. We took the bus to the amusement park and were escorted to the picnic tables where we were to meet for lunch at a specified time.

Then we were free! My friends and I went on some rides and had lots of fun. Then… it happened! I felt something was wrong. No! It couldn’t be that. I just finished my period (an 11-day-long one) three days BEFORE the field trip. There was no way I could have my period AGAIN, right? WRONG!

I rushed to the nearest rest room to check the damage. Surely the most it could be was spotting… I hoped. As I navigated through the busy amusement park, I felt a sense of doom come over me. I could feel that this was not spotting. I picked up the pace for getting to the rest room. This increase in speed only made the flow heavier, of course. There was no way I could be spotted by all of my 7th grade classmates this way, though. I walked/ran to the rest room as quickly as possible.

Despite the large number of stalls, there was a line because they were all in use. By this point, I was frantic. My 2 friends had zigzagged through the park after me. They exchanged glances when they saw the line (as I had already explained to them what the emergency was). I scurried into the first available stall. I felt nauseated at what I discovered. Physically, I was nauseated (as often was the case with my periods). This was an additional level of nausea… at the realization that my worst fear had just been confirmed.

The blood had saturated my underwear and seeped through onto my shorts… which were now soaked as well. I just cried and cried. My friends were on the other side of the stall door… asking me if I was OK. I was very much NOT at all OK. I was dumbfounded. What was I going to do? I didn’t have any spare clothes or underwear and I was stranded in a public rest room of the amusement park I was supposed to be having fun at. I was very much NOT having fun. This was a nightmare!

Fortunately for me, I had my two friends with me! I don’t know what I would have done without them. They saved the day by helping me deal with the most embarrassing, upsetting, stressful thing that I imagine could have happened to me… on what was supposed to be a day of fun! They could have bailed on me and hit the rides but they knew I was in distress and they were ready and willing to help… even if it was not going to be fun.

I was in the stall, in shock, not knowing what to do. My friend since 4th grade (we are still friends today 30 years after we met in class in 4th grade) offered to help first. She suggested I hand her my shorts under the door so she could wash them out in the sink. Now that is a true friend!! I was dying of embarrassment but didn’t feel I had any other options. So I slipped her my shorts under the door. She proceeded to wash them as thoroughly as one possibly can in a public rest room sink. She passed them off to my 2nd friend who blow dried them with the hand dryer. Next she asked me to pass my underwear out. Under the door it went. I was sobbing pretty heavily by now. She washed and washed and then that too got the hand dryer treatment. They weren’t perfect… but the obvious stains were washed out and they were dried and ready for me to get dressed again. I just kept crying. This was a pretty traumatic event for a 7th grade girl.

Once my dry clothes were passed back to me, I got dressed and tried to regain my composure. I had no pads with me and would need to figure out which of my classmates I might be able to bum pads off of. The thought of needing to locate a “pad supplier” was adding to my nausea. I wanted to click my heels and go home. I wanted to take a hot bath and put some clean, soft pajamas on. Instead, I needed to get through this field trip.

This day was downright traumatic for me. I blocked the memory of it out as best I could because it was so upsetting. However, I’ll never forget it. Dealing with chronic illness is tough on adults. Dealing with it is even harder for children. What 7th grader is prepared for what I described above? What adult would be?

Endometriosis is a serious illness. While misunderstood and mischaracterized by the media oftentimes, people tend to have some understanding that symptoms like pain and infertility can be associated with endo. The story I just told isn’t one you’d read in a medical textbook. It’s not one you’d probably hear many places at all. There are many stories I could have picked in place of this but I chose this story because it’s a symbol for what my early years with endometriosis were like. It’s emblematic. I could have replaced this story with any number of others. The main point is that endometriosis is a SERIOUS illness that affects women and girls in a multitude of ways. The profound impact endometriosis has on patients and their loved ones cannot and should not ever be underestimated!

Please sign: Endometriosis awareness petition

Send tweets like this on twitter, please:

MARCH BLOGGING MADNESS FOR ENDOMETRIOSIS AWARENESS #endo PLEASE RETWEET!

MARCH BLOGGING MADNESS FOR ENDOMETRIOSIS AWARENESS!

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

Michael J. Fox's Message Of Hope Captures Key Idea For The Chronically Ill: Would You Go Back?

The other night, I watched a fascinating documentary on PBS. I'll talk about that in a moment.

First, I'm going to start this post with a YouTube video clip from a 2006 interview of Michael J. Fox by Katie Couric.



A fantastic Frontline 6-part PBS documentary called "MY FATHER, MY BROTHER, AND ME" aired February 3, 2009. The topic was Parkinson's Disease but so much of what was discussed could apply to many other chronic illnesses.

For some reason the code to embed the video clip here is not working. So I will include the links to the PBS site where you can view it online.

Michael J. Fox was interviewed for this documentary. I'm including two links below... one for the interview with him and another for the documentary itself (in which he's also interviewed).

The first link is to Dave Iverson's interview of Michael J. Fox. It's running time is 19:38. It is divided into 5 parts. I highly recommend watching the whole thing... but the 2nd and 5th parts are particularly interesting to me because Michael J. Fox covers a topic that many chronically ill patients can relate to. He talks about how he would never want to go back to his life before Parkinson's Disease and he says, "somehow I've been able process loss in a way that I see the things that fill those gaps". If you just don't have 19 minutes and 38 seconds to watch the whole interview, focus on these 2 sections:

2. His personal perspective on living with Parkinson's...
This is where he explains how he wouldn't go back to his life before Parkinson's.

5. "For me, right now, this is my life, and I wouldn't trade it for anything..."
This is where he ties up the notion that he is doing what he's meant to be doing at this moment in time and while he'd love to find the answers for Parkinson's (and other illnesses), right now he's doing what he's supposed to be doing (this is a paraphrase... watch the video for his exact words).

VIDEO LINK 1:

Dave Iverson's interview with Michael J. Fox in conjunction with the Frontline 6-part PBS documentary called "MY FATHER, MY BROTHER, AND ME"

I just love, love, love this interview. For so many of us with chronic illnesses, it can be too easy to slip into, "why me?" thinking. For many of us, this mindset slips in briefly during the especially bad times only to be replaced by a more positive outlook of hope and purpose the remainder of the time.

No one wants to be sick. However, to be chronically ill and constantly angry about it is not healthy. What I love about what Michael J. Fox says in this interview is that it is aligned with how I see myself in relation to my illnesses.

Of course I wish I could wake up healthy tomorrow. Who wouldn't? However, I wouldn't go back in time and "erase" any of my illnesses from happening... no matter how much they hurt or challenge me. As Michael J. Fox so eloquently describes in this interview, I believe everything that has happened to me is (my words here) "part of my path".

Here is a link to his foundation:

The Michael J. Fox Foundation For Parkinson's Research

Let's just take the 1st major illness I was diagnosed with. If I hadn't had endometriosis, I would not have been in endo support groups at the local level since 1992. Through these groups, I have met some of the strongest, smartest, most caring, most resourceful, most compassionate people I've ever met. These fellow patients have been by my side as I learned to advocate for myself (and others) when interacting with healthcare professionals. They have checked on me after surgeries. They have called and emailed me to share experiences for mutual support.

If I hadn't had endo, I never would have started this blog. Through this blog, I have learned so much, met so many fantastic people, and given/received so much support.

I completely understand on a fundamental level what Michael J. Fox is talking about. Chronic illness really does change the way one looks at the world. Some might automatically think this to be a negative thing. However, I agree with Michael J. Fox that this can be a very good thing!

One little phrase has gotten me through many years of serious adversity:

"Everything happens for a reason"...

This phrase can be misused and uttered to people at times when it is not helpful. However, this phrase has been EXTREMELY helpful to me in coping with all sorts of things. When bad things happen in my life, I tell myself "everything happens for a reason" to get through the moment. I may not be able to see the reason something happens anytime soon (or even ever) but there have been many times over the years where something happened that I did NOT like at the time. Then, I have gone on at a later time to see that it was best in the long run... or that it helped me learn & grow, or that the negative happening was necessary somehow.

I just love the way Michael J. Fox words it in his interview. It's a great way to look at things.

The link below is to view the complete Frontline documentary. While the topic may be Parkinson's, much of this show could really apply to many other illnesses as well.

By the way, Dave Iverson is the man who interviewed Michael J. Fox in the link above. Mr. Iverson also did the documentary below. He, his father, and his brother all have Parkinson's Disease.

VIDEO LINK 2:

Frontline 6-part PBS documentary called "MY FATHER, MY BROTHER, AND ME"

In the full documentary, watch for Michael J. Fox's comments about 2 minutes into the 6th and final "chapter" of the online version of this show.

I really found this documentary very interesting!

Once you choose hope, anything is possible.
--Christopher Reeve

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

Take Our Daughters To The Polls!

I have been trying really hard not to get "political" on my blog because it could quickly turn from a health blog to a political blog.

There is nothing at all wrong with a political blog. However, I try to stay focused on the health issues I write about.

In light of the fact that Election Day is right around the corner and because some readers here do have daughters, I decided I'd post this clip to encourage readers to take their daughters (or maybe take a relative like a niece) with them when they vote. By setting an example for young girls, the adults in their lives can demonstrate the importance of everyone's voices being heard.

With healthcare being a very important issue this election year and with chronically ill patients being so severely impacted by the problems with the healthcare system in the U.S. at this time, voting is more important than ever this election.

So, let's get out the vote AND let's teach our younger loved ones how important it is to vote!

Women didn't always have the right to vote in this country. It's important for young girls today to be informed about women's suffrage and to understand how hard women AND men fought for women to have the right to vote in this country.

I had the privilege of visiting the National Women's Hall of Fame in Seneca Falls, NY several months ago. I learned quite a bit about women's suffrage by visiting the Hall of Fame. It is important not to take our right to vote for granted!



Thank you to Tracee Sioux for sharing yet another great video clip with me.

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

Endometriosis Blog: VIDEOS Of Husband's Grief Over The Loss Of His Wife Who Had Fibromyalgia. These VIDEOS Could Help Many People!!!

I just came across this moving video. I will forewarn you before you watch it that it is very emotional. I am crying as I write this post. The video is a man talking about the loss of his wife. His wife had fibromyalgia. This man is trying to create awareness about fibromyalgia, chronic fatigue syndrome, and chronic pain.

This video is very powerful. Again, I will caution you that this video may stir up painful emotions for viewers. However, I feel compelled to feature it here because I believe this widower really captures the tragedy that an illness such as fibromyalgia can cause.

In the video, you will hear this man make reference to a New York Times article that questioned whether there is such a thing as fibromyalgia at all. This article was very upsetting to me and to many fibromyalgia patients (and the doctors who treat them and believe fibromyalgia is VERY REAL)!!

I believe this man's compelling video is a chilling but loving account of how fibromyalgia affected his wife. I see it as a tribute to his wife... by a man in severe emotional pain who is working hard to create awareness about the scope of illnesses like fibromyalgia and chronic fatigue syndrome!

I urge you to watch this video and listen to this man's story of what his wife went through. His wife's story is chilling, sad, and tragic... but he is working to share her story to help others.

After the video, I will include a link to the New York Times article he referenced that upset so many people. Then I will also post the letter I wrote to the New York Times when that heinous article came to my attention.

This man asks that viewers of this video write to Oprah in an attempt to get this story aired on her show.

Please take 9 minutes and 54 seconds out of your life to watch this compelling video. It may bring you to tears as it did me. However, I believe it is worth watching. I admire this husband's tenacity in working to create awareness about the profound impact illnesses such as fibromyalgia can have on patients. This video gave me chills.

I was unable to get the embedded code for this video to work but if you simply click on the hyperlink below, you will be routed to this powerful video:

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VIDEO --- "Fibromyalgia - Lisa's Story".

Here is the compelling video from Lisa's husband... "Fibromyalgia - Lisa's Story"

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Here is a link to the terribly inaccurate New York Times article questioning the existence of fibromyalgia:

New York Times article on fibromyalgia

Here is the letter to the editor of the New York Times that I sent in February 2008:

From: Jeanne
Sent: Friday, February 29, 2008 11:10 PM
To: 'public@nytimes.com'
Cc: 'nytnews@nytimes.com'; 'managing-editor@nytimes.com'
Subject: OUTRAGE over "Drug Approved, Is Disease Real?"

ATTN Mr. Clark Hoyt, Public Editor

Cc: News Department; Managing Editor

I just learned of a January 14, 2008 (front page) New York Times article called “Drug Approved, Is Disease Real? I am astonished to have read this troubling, hurtful, inaccurate article. I was shocked that the New York Times article questions whether fibromyalgia is real!

The article’s portrayal of fibromyalgia as a fictional illness is appalling!

Can you imagine if the NYT wrote an article about cancer being imaginary? I have fibromyalgia and I have had cancer; trust me that fibromyalgia is as real as cancer. How many letters and calls would you be flooded with if cancer were painted as a fictional illness? Can you imagine the uproar?

This article drags millions of fibro patients through the mud with its inaccuracies. Fibro patients have enough trouble without people believing them to be fakers. Articles like this get read by many people. They read the “big bad pharmaceutical company” slant of this article and are left to believe that any fibro patient they meet is faking, lying, imagining, etc. This is very damaging to people already suffering so much. Fibro patients need MORE support from family, friends, and co-workers… not LESS!

Let me be quite clear. I have nothing to gain by “saying” I have fibro. I don’t receive any money from pharmaceutical companies (though they get plenty of mine)! I have been known to complain about the corruption of pharmaceutical companies, the expense of their drugs, and their ridiculous profit margins. I am not a lobbyist, pharmaceutical sales representative, or a person who stands to gain financially in any way by speaking out against this heinous article.

By the way, the reason I have identified myself as a fibromyalgia patient is that my doctor diagnosed me with it. He then referred me to a specialist (rheumatologist) to confirm OR rule out fibromyalgia. The specialist confirmed that I have it.

It is excrutiatingly painful! Cold weather, in particular, aggravates my fibromyalgia symptoms. Where I live, we had the pleasure of sub-zero (Fahrenheit) weather in the last few days (I am not referring to wind chill either). Temps like these cause unspeakable pain for me. There are times it hurts to give my husband or child a hug. Sitting in a chair for too long can result in increased pain. The list goes on and on...

An article that sets out to discredit a valid illness (recognized by many physicians, despite what was implied by the small number of apparently cherry-picked doctors that were quoted in this article) is reprehensible. This article is medically inaccurate and, quite frankly, just plain irresponsible journalism.

The article was offensive and potentially has hurt/will hurt many lives.

No one is more game to read an article proving the greed and corruption of pharmaceutical companies than I am. However, slamming an entire illness that’s well-recognized by most health care professionals hurts the millions of patients with this very real illness. Slam pharmaceuticals all you want! Please just make sure when you do so that the article is properly fact-checked. The doctors you quoted as insisting this illness is not real are in such a minority. Why spin a story to fit a category (i.e. “beat up the pharmaceutical companies”)? Why not just present the facts? The doctors’ opinions you quoted are not the norm.

I strongly believe the New York Times should print an apology and a retraction. Also, it should run articles with accurate information from doctors whose views aren’t so obviously out-of-step with the vast majority of doctors.

When someone is chronically ill, every day is full of challenges. The fibromyalgia patients I’ve had the privilege of meeting are better than most at “adapting” to adversity, illness, and pain… despite what the doctor you quoted said.

Please consider using more care before printing articles that will be read by many in your widely-circulated newspaper.

Thank you,

Jeanne

My thoughts are with this man who is grieving the loss of his wife but also rising up to create awareness and foster understanding of fibromyalgia, chronic fatigue syndrome, and chronic pain!!

His video will help others. Perhaps he'll even get to discuss what happened in his wife's situation with a much wider audience such as Oprah's.

This man's courage in the face of such tragedy is helping other people to comprehend how profoundly fibromyalgia and related illnesses can affect patients and their loved ones. I believe he is doing a great service by posting this video.

Related articles/previous posts from my blog referencing fibromyalgia and illnesses correlated to it/co-existing conditions:

Sunday, October 12, 2008 Endometriosis Blog: Vulvodynia And Vestibulitis, Launch Of Polish Website About Vulvodynia

Monday, October 6, 2008 Endometriosis Blog: Fibromyalgia Awareness And Resources For Endometriosis Patients Affected By This Commonly Co-Existing Condition


Sunday, September 7, 2008 Endometriosis Blog: NEW YouTube Video Clips! Endometriosis, Chronic Illness And Other Topics Of Interest!!

Monday, September 1, 2008 Endometriosis Blog: Fibromyalgia Awareness

Monday, August 11, 2008 Endometriosis Blog: Check Out Newly-Added Co-Existing Illness/Chronic Illness Links in "Frequently Visited Sites" At Bottom Of Homepage!!!

Saturday, June 21, 2008 Endo Blog Spotlight: Interstitial Cystitis, Endometriosis, and Co-existing Conditions/Chronic Illnesses

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Second video from Lisa's husband:
Husband's Quest/Lisa's Story

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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:

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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!!!
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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.

My Guest Blogging Gig On "Endometriosis & Body Image" at www.blogfabulous.com for Tracee Sioux

I'll include the link to view the article I wrote as Guest Blogger for Tracee Sioux's blog in a moment but FIRST here is the link to her general BlogFabulous blog itself:

http://www.blogfabulous.com blog

It's a blog devoted to empowering women and girls!

Tracee is speaking at the BlogHer conference in San Francisco and I'm honored to be featured as a Guest Blogger while she is away!!

NOW, my particular article... It was dubbed by Tracee Sioux: "Endo & Body Image, Jeanne".

To read my "Endo & Body Image, Jeanne" article...

Just click below:

http://www.blogfabulous.com/endo-body-image-jeanne/

The article I wrote (see above link) speaks to an issue that affects just about every endometriosis patient I have ever encountered.

In fact, I daresay it affects most chronically ill people in general!

Chronic illness in just about any form can have profound psychological effects.

I have found psychotherapy extremely helpful (the paid kind from a licensed therapist and the free kind my wonderful friends and family provide so generously)!!

I don't mean to diminish the value of professional therapy in any way!! It has helped me a great deal!!! My therapist is COMPLETELY AMAZING!!!

It's just that my friends and family are great, patient listeners too (with great insights and feedback) and they should get credit for the wonderful support they give me as well.

When I add the support I get from my therapist, family/friends, local endometriosis support group members, and the readers of this very blog... I realize I am very fortunate indeed to have such loving support from so many!!

I do my BEST to reciprocate any way I can AND to show my gratitude!!!

Thank you ALL of you for the amazing support you give me each and every day!

The last couple of months have been a wild ride for me but your support has helped immensely!

THANK YOU!!!

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

Endo Blog Spotlight: Interstitial Cystitis, Endometriosis, and Co-existing Conditions/Chronic Illnesses

*** Please read the disclaimer at the top of this blog. ***

As many of you know, interstitial cystitis is one of the illnesses often found in women who have endometriosis. Interstitial cystitis affects both men and women but there have been research studies showing a higher incidence of IC in endometriosis patients than in non-endometriosis patients.

Wow! I found a great interstitial cystitis video clip (on http://youtube.com/watch?v=myjd4UMtCfw) and I decided to include it here. It was posted on YouTube by “YourUpdate” on June 21, 2007.

Here is the description of the clip from www.YouTube.com: The Interstitial Cystitis Association (ICA) educates both patients and healthcare providers to better understand and treat people with IC. Contact The International Cystitis Association (ICA) at for info at: http://www.ichelp.org/



Another source of information on IC is the National Institute of Diabetes and Digestive Disorders and Kidney Diseases (NIDDK):

See their website at:

http://kidney.niddk.nih.gov/kudiseases/pubs/interstitialcystitis/

I had had interstitial cystitis for 12 years before finally finding a doctor who properly diagnosed me. My 4th cystoscopy (with hydrodistention) was performed while I was under anesthesia for one of my laparoscopies for endo.

The cystoscopy was done at that time because I still presented with classic IC symptoms despite 3 previous negative cystoscopies prior to my diagnosis by a different doctor. (Ironically my first 3 cystoscopies were done by 2 different urologists and my proper diagnosis was finally made by a pelvic pain specialist).

Anyway, I have a regimen that I follow and it does help. I believe I had IC for the 12 years leading up to my official diagnosis. Whether the appearance of the inside of my bladder lining changed much in those 12 years or whether my pelvic pain specialist was better at properly diagnosing IC than the urologists had been, I may never know. All I know is my IC has responded to IC treatment.

It is crucial to advocate for yourself. Like the interstitial cystitis patient in the video clip, I believe it is crucial for IC patients to “take an active role” AND to “get the correct diagnosis from your doctors”. IC is often misdiagnosed.

HINT: If you do get diagnosed with IC and your doctor prescribes medications to be instilled into the bladder, the pediatric size catheters are a 'must' in my opinion. So if you suspect you have IC and you DO end up getting diagnosed with it, just keep that in the back of your mind. My doctor automatically ordered the pediatric size for me but not all doctors may think to do this.

That reminds me… for anyone who is unaware of this, you can request a smaller sized speculum for Pap smears. Just ask your GYN and you may find pelvic exams are less painful!

Last but NOT LEAST: I found this amazing blog today on chronic illnesses. Actually I found this blog a couple of weeks ago & subscribed to it then --- BUT the IC stuff just jumped out at me today's mailing. There are just TONS of IC links near the bottom part of the (emailed via my subscription) link listed below.

http://chronichealthblog.com/category/interstitial-cystitis/

If you even think you might have IC, these links (the last link above) are worthwhile reading (I think) from what I saw when I skimmed through them. (I simply didn’t have time to read through them ALL but there are just LOADS of them)!

Follow your gut and find the medical care you deserve. After all, we ALL deserve a decent quality of life.

Let's skip past "striving to get well" and skip right to "thriving" if at all possible.

Be well!

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

Endo Blog: Holidays Can Be A Bit Challenging

As we head into a holiday weekend for those of us in the U.S., many are thinking of summer fun: barbeque cookouts, picnics, pool time, visiting with relatives, traveling, etc.

Holidays can also be an emotionally challenging, if not painful, time for chronically ill patients. Sometimes friends and relatives can have expectations of their chronically ill loved ones that are not realistic.

A chronically ill patient/chronic pain patient (endometriosis induced or otherwise) often cannot "keep up" with healthy peers on everything expected of them.

This can cause hard feelings, misunderstandings, tension, and isolation.

Some chronically ill patients push themselves HARD to "keep up" with "everyone else". Others lie low and avoid holiday visits because they find them too draining. Others are somewhere in the middle.

Self-care is very important! LISTEN to your body. If your body gives you signs and symptoms that it's hurting or tired, perhaps you may wish to modify your plans to fit your body's capabilities. Be flexible. The world will not come to an end if you don't "make everyone happy". In fact, making "everyone" happy is quite impossible. You can't please everyone.

Be true to yourself. Know your limits. Know when to quit. What fun is overdoing over the holidays and then paying for it for weeks (or more) afterwards?

Learning how to pace yourself can be a challenge. Gain support for yourself from other patients with the same or related illnesses. This can be from face-to-face support groups, emails exchanged, phone calls, instant messaging/chat rooms, message boards, blogs like this, etc. Suffering in silence isn't healthy. If you reach out to find even one person who "gets it", it will be well worth the time/energy invested.

For those of you who are about to celebrate the holiday weekend in the U.S., try to implement strategies that encourage self-care. For those elsewhere around the world (and I notice from my live traffic map that this number is growing!), it doesn't take a holiday to cause people to display unrealistic expectations of chronically ill patients. Assert yourself when needed. Being polite but firm & honest about your limitations can make things easier (or harder) in the short run, depending on with whom you are interacting. Doing this almost always works out better in the long run, though.

Don't be afraid to say "no thank you... I can't make it" if an activity is beyond your limits. You can't please everyone.

Please have a happy and safe holiday weekend and find something (just about anything) that brings you joy and do it/use it). Don't feel guilty if you worry people will "judge you".

For those who are traveling, try not to overdo things and travel safely this holiday weekend.

Self-care is so crucial to managing chronic illneses.

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

Gratitude Moment: Taking Time to Thank Tracee Sioux who has been a GREAT Supporter!

About 3-4 months ago, I stumbled across a blog:

http://www.sosiouxme.com/.

It's written by a woman named Tracee Sioux (pronounced "Sue").

Here's a picture of Tracee Sioux. (I hope she doesn't mind that I used her picture without asking her first but that would have spoiled the surprise and her picture is all over the Internet thanks to her blog so I don't think she will mind):

I found her blog simply engrossing. I had looked at numerous blogs before I found Tracee's but suddenly I found myself posting comments to her articles and basically joining in the discussions taking place on her blog about a variety of topics. (Tracee writes a blog about the topic of empowering women and girls and I had plenty to say about those issues).

Sometime in March, I emailed Tracee directly (not a post on one of her comment boards but an email to the address listed on her site). Since March is endometriosis awareness month and since Tracee's blog seemed to be quite active, it occurred to me that it would be REALLY cool if she might consider the possibility of posting some information about endometriosis on her blog. (It turns out she has two separate blogs but the www.sosiouxme.com link will get you to both of them).

Anyway I emailed her with some very brief info on endometriosis and asked if there was any possibility that she might consider writing something up on endometriosis and posting on her blog. I figured a blog targeting empowering women and girls would be a good fit for reaching the audience that could benefit from endometriosis awareness!

Tracee wrote back immediately and agreed to write about endometriosis on her blog. I was thrilled. She took some information I sent her and combined it with her own perspective on endometriosis and/or the management of women's pain. (There has been research done that shows women's pain is undertreated as opposed to men's pain. See the "For Grace" site for more information about this topic):

http://www.forgrace.org/women/in/pain_home/.

Anyway, Tracee then wrote not one but TWO articles (one on each of her two blogs) about endometriosis and/or pain management for women! I was very excited.

I was thrilled and honored to have the opportunity for increasing endometriosis awareness through Tracee's blog. I was excited at the opportunity for outreach to endometriosis patients and their loved ones, I was pleased for endometriosis to be covered on a blog that gets lots of traffic, and I was touched that my simple email request had blossomed into two articles that could stand to help endometriosis patients (and their loved ones).

I followed Tracee's blogs regularly for weeks (actually for months). In that time I started to really be inspired about the possibility of starting my own blog. I was a bit vague on the details at first. Blogging is new to me. I didn't know where to start at first. I REALLY wasn't sure if I could maintain a blog properly because I didn't know if I had to post articles on a certain frequency. (With the multiple chronic illnesses and severe pain, there are times I just can't write articles and there is no way I could "sign up" for something with deadlines and pressure to produce just so much with a particular frequency/timing)!!!

I didn't discuss my "secret dreams" of starting a blog with anyone but talked quite a bit about Tracee's blog to my husband over a period of time. One day he asked me if I'd ever thought of starting my own blog. (I was thinking, "is he reading my mind?"). Well... I had actually given it lots of thought but hadn't voiced it to anyone (even my husband). This is very unlike me! I infamously wear my heart on my sleeve. Those who know me well know that I'm generally not the "secret-keeper" type and that I share my ideas and dreams quite openly in normal circumstances. However, this was something I had some concerns about. I didn't want to "sign up" for something that would end up burning me out or escalating my symptoms. I'm sick enough and couldn't risk undertaking a project that potentially could make me even sicker. A couple of weeks went by. Then Tracee emailed me one day asking the same question my husband had, "have you considered starting your own blog?"

Shortly thereafter Tracee came to the rescue. After pounding her with questions and listening to her GREAT tips, I realized that there are different types of blogs and I COULD make this happen. There ARE blogs that are tied to various media companies where you must produce 6 articles per week, for example. That got ruled out immediately for me due to my illnesses. So Tracee explained to me that I COULD have a blog where I set my own pace and simply post when I'm well enough to do so. That was just an example of the multitude of helpful tips and useful information Tracee Sioux provided me when I was contemplating starting a blog.

She truly inspired me. Yes, her tips and information were inspiring. However, she also inspired me because she is courageous and brave. Her blog tackles tricky and controversial topics at times. She speaks her mind! She does not let fear prevent her voice from being heard. Whether you agree with all of her opinions or not, she is strong and resilient and kind. She is thoughtful and supportive. She CARES!!!

So I just thought it would be appropriate to take a moment to post this "gratitude moment" and thank Tracee Sioux for inspiring me to use my voice to speak out on behalf of endometriosis patients around the world; to speak boldly about women's choices to advocate for themselves when navigating the landmine that is our healthcare system in the U.S.; to "get the word out" to people (men and women, patients and medical professionals... anyone interested in listening or posting their feedback comments here); to generate more awareness about the potentially devastating illness we call endometriosis...

I've seen endometriosis sidetrack or decimate careers, endanger marriages or contribute to divorces happening, cause heartbreaking infertility, cause excruciating and debilitating pain... and so much more! I have met face-to-face (in endometriosis support groups in a couple of cities and their outlying areas in which I've lived over the years) with countless women who are SO sick yet somehow manage to do so much! Unfortunately, sometimes they do "so much" at their own peril. I know ALL about this topic because I went from working 80-hour weeks about 14-15 years ago to now being too sick to work outside the home at all. Pushing the body (and mind) past its limits can have devastating results.

So I'd like to thank Tracee Sioux, for her role in inspiring me to start an endometriosis blog. My intent is to reach out to endometriosis patients and their families, to provide information they may find useful or interesting, to soak up their feedback on the comments to the articles, to hopefully get "guest blogging" rolling eventually (if you have story ideas, let me know), etc.

I am not a medical professional. I am an endometriosis patient whose symptoms began 26 years ago. At my current age of 39, I been through a great deal with endometriosis. From pharmaceuticals and surgery to any valid alternative medicine methods/info I could get my hands on, I have learned and grown so much. My endometriosis support group has been a massive well of info and support!

I hope to incorporate what I've learned from personal experience and from my role as an endometriosis support group co-leader for almost 7 years now into this blog. I want to HELP PEOPLE attain a higher quality of life, be active participants in their healthcare, advocate for their rights when interacting with medical professionals, etc.

I have seen what a relatively small local support group can do to connect endo patients with other endometriosis patients who simply "get it", to help them truly network with fellow patients (a HUGE benefit!!), and to simply have a free exchange of information that positively impacts all who participate!!!

IT IS VERY TOUCHING HOW MUCH SIMPLY CONNECTING WITH FELLOW PATIENTS CAN DO!!!

With this blog, I hope to reach MORE people. My intent is to create on online community of sorts... where readers like you can stop by in moments of need, visit the blog on a regular basis to "stay in the loop" about endo happenings, have the chance to interact with other endometriosis patients (and other chronically ill patients as well)...

I just wanted to take a moment to publicly thank Tracee Sioux.. for her support, encouragement, information, and kindness. Her input was very helpful in me getting out of the "fear zone" about starting a blog... and simply jumping in and doing it! I hope this blog proves helpful, useful, informative, etc. My intent is to provide a comfortable place for interested readers to read posts, write comments/feedback, and perhaps even submit their own ideas for topics of interest, etc.

We're only 20 days in on this blog and I know I have to pace myself. There will be times when I'm too sick to post. When this happens, please check back! I'll post again as soon as I am able.

The more active this blog becomes, the more people we reach. With estimates as high as 80+ million women worldwide who are endometriosis patients AND with the incidence of co-existing conditions for so many endometriosis patients, I believe the need for endometriosis support and information is VAST and I hope to do my small part in providing information/support and a forum for readers' feedback on a variety on endometriosis topics and related topics (such as the topic of chronic illness in general).

I hope to live up to the challenge ahead!

Right now, I just want to thank Tracee again for her support, encouragement, and information. Her brave spirit, her fearlessness, her candid comments, and her honesty are inspirational to me.

Thank you Tracee!

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

Thank You for Your Patience Waiting For This Updated Endometriosis Post! I'm Too Ill For a Full Post Now (Details Below)

Here's an update on why you haven't heard from me for a few days:

On June 13th I was VERY ill. I saw one of my specialists 6/13 and he was leaning towards having me go to ER. However, we found a less invasive way of dealing w/the situation. I'm not up to posting a blow-by-blow account due to low energy level (at least not right now). Please keep checking back for new endometriosis posts. I expect to be feeling well enough to post an entry (besides this just updated one) soon! I just can't do it right this minute. Thank you for your patience!!!

Today (June 15th) I am still quite ill. I hope to do a "real" endometriosis post soon (i.e. specifically about endometriosis rather than about my numerous chronic illnesses acting up and me being in a situation where I can't do much activity since I need to relax). One of several reasons that two of my doctors were going to send me to the emergency room was that my blood pressure was very high plus I was having vision problems and severe head/eye pressure that my doctor seemed to connect back to the blood pressure being so high: (190-121) on June 13th when it had been a perfectly normal 120/80 just 3 days earlier at my primary care physician's office)!

So I've been taking some well-needed time to "chill out" in hopes that my blood pressure will stay low enough that I won't have to go to the ER. I'm still trying to avoid going to the ER at all costs. (That's a long story). Let's just say I AM following my doctors' orders --- but I have had some close calls this weekend where I thought I might have to go to the ER between Friday and today.

I wrote a LONG, detailed response to Alicia's comment to this post but somehow I accidentally wiped it out!! I'm very sick and just not "operating on all cylinders" today.

***
I SHOULD EMPHASIZE THAT THE ER TRIP MY 2 DOCTORS SUGGESTED AS A POSSIBILITY YESTERDAY (THAT MAY STILL BECOME NECESSARY TODAY) WAS NOT FOR ENDOMETRIOSIS.
***

Today I'm just focusing on meeting the doctors' criteria for not going to the emergency room and focusing on how to NOT go to ER today. I'm just trying to make it until Monday and call my PCP first thing in the morning with an update. I'll keep you posted.

THANK YOU everyone for your patience. Lots of endometriosis posts will be coming up as soon as I'm stabilized!!! Thank you for your patience!!!

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