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.

Endo Blog: Pain Care Policy Act Passed UNANIMOUSLY In House Of Representatives! Let's Make Our Voices Heard To Get Congress To Follow Suit!

Sometimes chronic illness and pain are so totally overwhelming that they make us feel downright powerless and drained (emotionally, physically, and financially as well).

There are times we wish we could stop feeling so helpless and take some sort of positive action to help ourselves and the millions of others suffering chronic pain.

Here is a great opportunity to do just that!

News flash!

Thanks to Sherril Johnson of The Invisible Chronic Illness Experience blog, I just became aware of exciting legislation -- The National Pain Care Policy Act (HR 2994) -- that has passed in the House of Representatives UNANIMOUSLY!

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This national legislation is so important. What can YOU do to ensure that Congress passes this bill as well?? Good question! I'm glad you asked! :)

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Click on the link to Sherril's blog The Invisible Chronic Illness Experience. From her 9/25 post, click on "Online Advocacy Center". Then click on the "national legislation" link (middle/bottom of the screen). Now click on "take action NOW". From here, click "take action". Follow the simple, step-by-step instructions provided on this next screen to send an email to the proper representative for you and your region. (The form will figure all that out for you once you input your basic information). After reviewing the form letter provided (yes, it's all written for you to save you time!) and after inserting your contact information, just click "next step". A screen will appear informing you of who the email is being sent to (your representative in Congress). If you're ready to send your email, just click "send your message". That's it! You're done!

It took me approximately 3-4 minutes -- but that was with me flipping screens back & forth while writing these directions. So I'm guessing it will likely take you about 2-3 minutes in total. By taking just those couple of minutes to have your voice heard by Congress, you are speaking out on an issue that affects millions of people. I would imagine most, if not all, who are reading this right now are affected either directly or indirectly by pain and the often inadequate or improper treatment/management of it for so many people.

Please visit Sherril's blog The Invisible Chronic Illness Experience for much more information on this landmark legislation that can help chronic pain patients like you and me!

If you read the detailed and informative post on Sherril's site, you'll see options to read the full transcript or the summary.

If you read the summary of the bill passed by the House of Representatives, one particular category of interest to me was the one in "Section 2" that mentioned it authorizes an Institute of Medicine Conference on Pain Care to, in part:

Highlight disparities in pain care specific to populations that are disproportionately under-treated for pain.

Awhile back, I became familiar with an organization that works to close the gender gap in this area. Women's pain is undertreated when compared to men's pain. For more information and plenty of details on this topic sure to interest our many female readers, their loved ones... and also our male readers who have female loved ones of their own that may be within this undertreated group, please visit For Grace! Their motto is "Empowering Women in Pain". Their informative website has some very interesting facts and is definitely worth looking at.

Sometimes taking a moment or two to help ourselves and others can make us feel productive, boost our self-esteem, and help improve a situation that needs attention. This is an opportunity to do all of the above!

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

Jeanne's Endo Blog: YouTube Video Clips --- Endo, Infertility, Chronic Pain, Pelvic Pain... ***PART TWO***

***PART ONE WAS ON JUNE 9, 2008***

### The video clip posted on June 9, 2008 on this blog can be viewed easily by clicking the title of this post. That will route you to YouTube. This is an AMAZING video on chronic illness!!!
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***THIS POST BELOW IS PART TWO***

Please view the comments listed under the June 9, 2008 post:

Jeanne's Endo Blog: YouTube Video Clips --- Endo, Infertility, Chronic Pain, Pelvic Pain...

The woman behind the hauntingly beautiful video clip that cycles through and displays on this blog daily posted a comment today. The clip is about chronic illness. I'm sure just about anyone reading this blog will find her clip amazing!

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.

Endometriosis Topics: What Interests YOU??? Let's VOTE Using A SHORT Poll To Show What We Want To Read About Endometriosis!

Making Our Endo Blog the Best It Can Be:

I thought this might be a perfect time to ask you and other endo blog readers like you for your input!!

Story ideas/topics can range from one word ones like "infertility" to phrases/questions on loaded topics like "does anyone have tips for dealing with loved ones who just do not understand the limitations that endometriosis puts on me?"

In an effort to determine how to best meet your needs, I have developed a SHORT poll.

Please view the new (and very quick!!) poll. It's in the right (pink) sidebar - after "welcome" and before "archive" sections - of this blog. So cast your votes and have your voice be heard!

I've included the poll to determine which topics interest endo blog readers the most. It allows you to VOTE for one or more of the topics listed. It'll provide feedback for me on YOUR support needs and I'll get to see what my fellow patients are looking for/expecting in an endo blog.

Simply select any (or all) options you find applicable; then just click on "vote" to view the results of the voting by you and other endo blog readers thus far!

I think the best way to make this blog successful and thriving is to elicit input from endo blog readers like you! Who better to ask for input than YOU???

You may know exactly what information/support you're searching for or in need of...

Or maybe you are overwhelmed and NOT sure what to look for...

Either way, I'm sure you can help me focus in on the issues that will be most meaningful and useful for you and your circumstances.

I could honestly write blog posts all day, every day --- but it wouldn't be very productive or useful if no one reads them or finds them helpful! THIS POLL is a chance for YOU to provide input that will help me focus in on the topics that matter to YOU the most!

Please take just a moment (I just checked it's 9 quick clicks OR LESS!) to do the endo blog readers' poll. Just select the topic(s) most interesting to you.

Also, IF you fall into strictly the "other" category listed last, please feel free to email me directly with any endo ideas(s) that I did not list --- but that you would like to see featured. In that case, just email to this address: endendo@frontiernet.net.

If you email ideas directly, PLEASE fill in the email's subject line with "endo blog ideas" (or something similar) --- so your wonderful emails won't get lost amongst a bunch of spam... and I'll be able to use your input & ideas to create new posts for the endo blog. I can't guarantee I'll cover each idea submitted immediately but I will most likely take bits and pieces from endo-related idea emails I get and somehow interweave them into a narrative.

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.

Short and Sweet: Email Notifications of Comments Posted on the Endometriosis Blog

Would you like to get emails notifying you when this endo blog gets comments posted on it?? I have a few spots left if you'd like to sign up for notifications.

If you would like to receive emails updating you when new comments are posted here on http://www.endendoat.blogspot.com/, all I need is for you to notify me at the following email address: mailto:endendo@frontiernet.net?subject=Email%20Notifications%20for%20Endo%20Blog (If the email address you want to use for the notifications differs from the one you are emailing me from, please just let me know which one you want used for your endo blog comment updates).

This is a good option if you want to stay in the loop by seeing the comments posted (when they’re posted) in response to endo blog articles... without having to pull up the endo blog to check for updates all the time. The comment updates will come to you instead of the other way around! (You'll still need to pull up the blog to see new posts... but when you receive the email notifications of comments you'll most likely then visit the blog and take a peek around to see what's new anyway). You will know when comments are posted to this endo blog because your email notification will tell you when it happens.

There are a limited number of spots open to add email addresses for this feature. So it’s first come, first serve.

THIS POST WAS UPDATED on 6/21/08: I have been contacted offline about the signup for email notifications but have not yet filled up all of the spots. If you are interested in having your email address added to the list which will enable you to get notifications by email when new comments are added to this blog, simply send me an email at mailto:endendo@frontiernet.net?subject=Email%20Notifications%20for%20Endo%20Blog (Please remember that if the email address you want to use for the notifications DIFFERS from the one you are emailing me from, just let me know which one you want used for your endo blog comment updates). Also, please mention "email notifications" in the subject line so I will know it's a notification request. (This will assist me in differentiating valid requests from spam). Thanks!!!

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

YouTube Video Clips --- Endo, Infertility, Chronic Pain, Pelvic Pain...

You may have seen the YouTube clips to the right (see the "YouTube Slideshow. Random Videos will Cycle Through. Not responsible for content!" arrow).

I really found the "Hyperfluorescent Endometriosis" clip - a demonstration of the hyperfluorescent endometriosis with autofluorescent laparoscopy from Steven F. Palter, MD's prize winning video - intriguing. I had never heard of this method of visualizing small endometriosis implants that are not easily seen by the naked eye. Dr. Palter mentioned the use of a combination of illumination and observation filters.

There are clips on chronic pain and infertility as well. The clips will occasionally rotate to a new set. It takes a bit of time for it to rotate sets but the clips will switch on their own if you're patient. I tagged this search for YouTube videos on the topics of chronic pain, endometriosis, infertility, and pelvic pain. Please excuse any ads or inappropriate language that might dynamically rotate through. (I am not responsible for the content of the video clips). The tags I listed should hopefully get it narrowed down to some good videos.

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

EDITOR'S NOTE:
Here's a little postscript...
Please see a follow up to this post on JULY 14, 2008
Jeanne's Endo Blog: YouTube Video Clips --- Endo, Infertility, Chronic Pain, Pelvic Pain... ***PART TWO***

The Beauty of Nature: Healing Illness

I thought this photo was beautiful enough to justify a post!!! Sometimes in our busy daily lives, we don't stop to fully appreciate the wonder and beauty of nature. For just about everyone nowadays, our daily lives are simply too rushed and complicated.

The beauty of the plants and flowers of nature isn't just the aesthetic appeal that is so clearly demonstrated by the remarkable tulip photo above.

As many of us know, nature is also beautiful in a very practical sense. We have many natural remedies on our list of choices for treating many illnesses... including endometriosis. Many natural supplements are made from a wide variety of plants.

How else can a beautiful flower help act as a healing agent besides by being pretty to look at? Think about how common it is to send flowers to someone who is sick or in the hospital. Yes, they are pretty. The thing is that maybe, just maybe, flowers are helping us more than we think. They can lift our spirits... for example.

When given to others, flowers can let someone know we're thinking of them at a difficult time. Flowers are customarily given at happy times too. In fact, they are used in celebration of many of the milestones of our lives. If you think about it, flowers are important throughout our lifetimes.

I realize this picture is of a tulip and not a rose. (This photo was simply too pretty for me to pass up and tulips are my favorite flowers besides). Plus, bees like tulips, right? :)

Anyway, the expression to "take time to stop and smell the roses" makes lots of sense... though most of us struggle to do so as often as we'd like. Obviously, "stopping to smell the roses (or tulips, as the case may be)!" is a great metaphor for slowing down, taking time for self-care, and simply relaxing. For some of us listening to calming music (perhaps even music with nature sounds incorporated) is very helpful, for some of us mindfulness meditation does wonders to quiet the mind, and for others a simple picnic outdoors on a sunny day can calm the body and mind down.

I have no doubt (layperson that I am) that appreciating nature on a regular basis and (frankly) experiencing something other than a car, work cubicle/office, or "on call" duty is truly HEALING! Maybe our immune systems get a boost from allowing those stress hormones to settle down. Maybe our breathing is less shallow and we are getting more oxygen with each breath. I'm sure the list goes on. The key is that nature is a healing force.

Many years ago... long before the white man crossed over to America, the Native Americans knew a great deal about the value of plants for medicinal purposes. (There obviously were no pharmaceuticals back then)! Unfortunately, the Native Americans' lives were never the same after the white man settled what is now the United States.

Fortunately, some Native American traditions have been passed along successfully generation after generation. I once had the privilege of attending a Native American Dance and Music Festival. I was amazed at the rich history of the Native Americans for using plants medicinally. These lessons weren't taught in my history books. However, we could all stand to learn from the Native Americans and their respect for nature.

Have a wonderful week and don't forget to appreciate the nature all around you.

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

By the way, this elegant tulip photo is used with permission from "mimbrava" and was found on the Flickr website. If you click on the title of this post or the photo itself, it will route you to the Flickr website. Thank you "mimbrava" for a gorgeous, uplifting photo of my favorite flower.

Book Review - An Awesome Book on the Topic of Chronic Pain!

The Truth About Chronic Pain: Patients and Professionals on How to Face It Understand It, Overcome It by Arthur Rosenfeld.



I found this book in my local library. I think it is fantastic! It was interesting from start to finish.


The first section of the book, "Patients in Pain", consists of several chapters. Each chapter contains the author's interview of a chronic pain patient.


Part two contains the author's interviews with caregivers (health care professionals).

The third section is called "Thinkers on Pain".


Finally, the author concludes with an epilogue, "Toward Compassionate Pain Management", which covers the current state of pain management in our society and his view of how it needs to change for the better.


I think ANYONE who has chronic pain will find this book absolutely fascinating. Many of those interviewed in this book have strong opinions on the topic of pain. I agreed wholeheartedly with some, but not all, of their opinions. Whether I agreed with each opinion or not, I found all of the viewpoints represented here to be quite interesting.

I highly recommend this book to anyone who experiences chronic pain (or who has a loved one who does). While I realize that not all endo patients experience physical pain as a symptom, this book may still hold interest for those without that symptom. (Emotional pain is discussed in the book as well as physical pain).

This book is thought-provoking and eye-opening.

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