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9/29/2008

Endometriosis Blog: Let's Take A Moment To Learn About How Blog Action Day Will Address The Issue Of Poverty!

Writing a blog, for me, is about more than just sticking to one topic day in and day out. While this blog focuses on endometriosis and other chronic illnesses, I think it's important to participate in events that can have an impact beyond the day-to-day struggles we as chronically ill patients face.

For those of us who routinely have enough food to eat, have a home to live in, and do not live in fear for our day-to-day safety and security, it's hard to imagine what it's like to live in poverty. Whatever challenges we may face, I believe it's important to remember those less fortunate than us and do what we can to make this a better world for all.

I hope you'll take a moment to view the following video. The more we can get the word out about this event, the better.

I'm posting the following video in preparation for Blog Action Day on October 15, 2008. To learn more about Blog Action Day, just click on the Blog Action Day graphic on the right sidebar of the blog. This year's topic is poverty. Let's get a conversation going about this important topic.


Blog Action Day 2008 Poverty from Blog Action Day on Vimeo.

Thank you.

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

9/26/2008

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!

++++++++++++++++++++++++++++++++++++++++++++++++
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! :)

++++++++++++++++++++++++++++++++++++++++++++++++

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.

9/23/2008

Endometriosis Blog Seeks Guest Bloggers On Health-Related Topics

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

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

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

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

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

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

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

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

How to submit your idea(s):

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


What I Won't Accept as Guest Posts:

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

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

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

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

9/22/2008

Endometriosis Blog: Interstitial Cystitis & Endometriosis

In a follow-up to the Friday, September 19, 2008 post "Endometriosis Blog: Spotlight On The Interstitial Cystitis Association!!", I'd like to include a link to an article about endometriosis and interstitial cystitis from the "IC Disease -- Life with Interstitial Cystitis, Vulvodynia, Incontinence, & Other Bladder Conditions" website.

Here is the main link for this site:

http://icdisease.today.com/

Please see their post using the link below. I think it underscores much of what we have been talking about regarding interstitial cystitis and endometriosis.

Link to "Illnesses Similar to IC Disease: Endometriosis"

http://icdisease.today.com/2008/05/29/illnesses-similar-to-ic-disease-endometriosis/

Many women, including myself, have endometriosis AND interstitial cystitis as co-existing conditions.

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

9/19/2008

Endometriosis Blog: Spotlight On The Interstitial Cystitis Association!!

Since so many readers of this blog have interstitial cystitis as well as endometriosis and since the illnesses have been correlated in studies, I would like to spend some time today on interstitial cystitis.

Founded in 1984, the Interstitial Cystitis Association (ICA) is the authoritative source of interstitial cystitis (IC) information in the United States.

The ICA:

+ Provides the most comprehensive & up-to-date information on IC

+ Offers IC patients, their families, and friends support

+ Educates the medical community and the public about IC

+ Represents patients and advocates for research funding

+ Provides pilot research funding to find effective treatments and a cure for IC


Since I'm on the email list for The Interstitial Cystitis Association, I receive wonderful updates on interstitial cystitis on a regular basis. The one I just received, however, is special enough to warrant some extra attention. It is full of information on what's happening in the interstitial cystitis world.

I'll include the link to it in a moment but first I'd like to explain a bit about my personal experience as an interstitial cystitis patient. As an interstitial cystitis patient... I know firsthand the unbearable pain it can cause! I also know that it's often misdiagnosed or under-diagnosed. (It took 12 years and 3 urologists telling me I didn't have interstitial cystitis for me to finally find a pelvic pain specialist who said, "you definitely do have IC"!)

The interstitial cystitis treatment regimen he has me use isn't always super-convenient but it is well worth the effort because it really reduces the severity of my symptoms significantly!! (In addition to taking an oral prescription that reduces my symptoms, I self-catheterize at home to administer what's called a 'bladder instillation'. Essentially, the medications (there are two of them) that are instilled into my bladder (temporarily) are helpful for me for controlling my symptoms (in combination with the oral medication therapy).

Annual Report of The International Cystitis Association: A Year of Transformation

http://www.ichelp.org/Portals/0/AnnualReports/2007AnnualReport.pdf

In this report, you'll hear that there has been a "changing of the guard" at ICA:

Vicki Ratner stepped down and the ICA welcomed a new Executive Director. After almost 25 years as the ICA’s guiding force, Vicki Ratner, MD, stepped down from her positions as ICA President and Chief Medical Officer. The ICA is profoundly grateful to Dr. Ratner for her tireless efforts on behalf of IC patients worldwide. Her work has had direct impact on the quality of life for all people with interstitial cystitis.

Barbara Gordon, MBA, RD, is the new ICA Executive Director. Drawing upon a wide range of healthcare and managerial experience, as well as a deep understanding of the special challenges confronting people who suffer from chronic diseases, Gordon fully embraces the goal of the ICA to give hope to countless interstitial cystitis patients around the world.


Several themes emerged in the International Cystitis Association's report.

These are some of the words they used regarding the past year for ICA: transforming, embracing, advocating, increasing awareness, empowering, appreciating, ensuring...

Research programs---

Some key points made in the research report cited in the above link include:

+ Research confirmed that IC doesn't travel alone, and that patients often have other problems such as irritable bowel syndrome and fibromyalgia.

+ Researchers explored the cost of IC and found it to be much higher than that of many other chronic illnesses such as peripheral neuropathy, low back pain, fibromyalgia, or rheumatoid arthritis.

+ Many innovative treatments for IC were further developed this year. Oral medications, bladder instillations, external and internal stimulator devices, and hands-on interventions advanced along the pipeline, all with the potential to provide better IC symptom relief.

Personal Impact:

Researchers from the National Opinion Research Center (NORC) at the University of Chicago presented the first results from the NORC/ICA METRIC epidemiology survey at the American Public Health Association’s 135th Annual Meeting and Exposition in Washington, DC.

The study was based on nearly 3,000 responses to a 28-page survey that gathered information on IC patients’ life experience.

The study found that:

40 percent of respondents reported low self-esteem as a result of IC

42 percent believed that IC caused them to “miss out on life”

31 percent admitted that IC led them to have suicidal thoughts

22 percent noted that IC has caused them to lose close, meaningful relationships

66 percent said IC had negatively affected intimacy

71 percent noted pain during sexual activity

Patients Have Record Impact on Capitol Hill:

“Because of the efforts of IC patients, policymakers on Capitol Hill are recognizing and more aggressively addressing the challenges chronic pain patients face from a fractured healthcare system that limits access to the multimodal therapies patients need and from the Social Security Administration’s bureaucracy in granting disability benefits. Our advocates have also helped legislators recognize the need to influence the direction of federal research so that NIH is investing in future therapies and cures for these intractable conditions,” said Government Affairs Consultant Libby Mullin.

Here is the contact information for the ICA:

Interstitial Cystitis Association
110 North Washington Street
Rockville, MD 20850
800-HELP ICA (800-435-7422)
www.ichelp.org


Thank goodness for all of the great work this organization does. It helps so many people!

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

9/17/2008

Endo Blog: How Much Can Quotes & Artwork Heal, Comfort, And Enlighten Us??

Sometimes when we're chronically ill, we tend to focus on our physical and emotional pain. While this is certainly an understandable part of being chronically ill, sometimes it's nice to distract ourselves from the pain by focusing our energy on uplifting materials!! Today I thought I'd write a post that IS NOT focused on endometriosis, interstitial cystitis, fibromyalgia, or any other chronic illness. Instead, I thought I'd post some quotes and artwork to shift the focus off of our illnesses for a bit!

If you're anything like me, you love quotes! I find them insightful, uplifting and thought-provoking. Of course, not all quotes are uplifting in nature. Some clarify bitter truths, cause the reader to examine history, and act to educate us in how we can all be better people by helping others.

I've decided to list quotes from a wide variety of sources... in random order. Hopefully something in this list will inspire you, comfort you or support you. Also, I've included some mandala art. Hopefully you'll find this uplifting!

All mandala art contained in this post is courtesy of Jennifer at http://www.mandalaspiritart.com/




"Beauty" Mandala

Here are some quotes that resonate with me in some way:

++++++++++++++

“Each one has to find his peace from within. And peace to be real must be unaffected by outside circumstances.”
-- Mahatma Gandhi (Indian Philosopher, internationally esteemed for his doctrine of nonviolent protest, 1869-1948)

“Anyone who has never made a mistake has never tried anything new.”
-- Albert Einstein (1875-1955), theoretical physicist, philosopher

“Life's most urgent question is: What are you doing for others?”

-- Martin Luther King Jr. (1929-1968), American civil rights leader

“Thousands of candles can be lighted from a single candle, and the life of the candle will not be shortened. Happiness never decreases by being shared.”
-- Buddha




"Insight" Mandala

“Love is all we have, the only way that each can help the other.”
-- Euripides (484 BC - 406 BC), Greek tragedian

“When you cease to make a contribution, you begin to die.”
-- Eleanor Roosevelt (1884-1962), U.S. First Lady, diplomat, human rights activist

“Neither fire nor wind, birth nor death can erase our good deeds.”
-- Buddha

“If it fails, admit it frankly and try another. But above all, try something.”
-- Franklin D. Roosevelt

“I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.”
-- Maya Angelou (b. 1928), poet




"Joy" Mandala

“True heroism is remarkably sober, very undramatic. It is not the courage to surpass others at whatever cost, but the courage to serve others at whatever the cost.”
-- Arthur Ashe (1943-1993), professional tennis player, civil rights supporter

“There was never a good war or a bad peace.”
-- Benjamin Franklin

“If mankind recognizes that war is impossible...that all national rivalries are foolish...if they get together any kind of an extension of detente... then we may pull out of it all the better for it.”
-- Tori Amos (musician, singer, songwriter, pianist)




"Happy Days" Mandala

“The greatest virtues are those which are most useful to other persons.”
-- Aristotle (384-322 B.C.), philosopher

“I simply can't build my hopes on a foundation of confusion, misery and death ... I think peace and tranquillity will return again.”
-- Anne Frank (German Jewish girl and author of a diary of her family's two years in hiding during World War II, 1929-1945)

“If the white man wants to live in peace with the Indian he can live in peace. There need be no trouble. Treat all men alike. Give them all the same law. Give them all an even chance to live and grow. All men were made by the same Great Spirit Chief. They are all brothers. The earth is the mother of all people, and all people should have equal rights upon it.”
--
Chief Joseph (Native American Quote)



"Native American" Mandala

“You know that saying, bad things don’t happen to good people? That’s a lie.”
-- Tori Amos (musician, singer, songwriter, pianist)

"Trouble no one about their religion; respect others in their view, and demand that they respect yours. Love your life, perfect your life, and beautify all things in your life. Seek to make your life long and its purpose in the service of your people. Prepare a noble death song for the day when you go over the great divide. Always give a word or a sign of salute when meeting or passing a friend, even a stranger ... Show respect to all people and bow to no one ..."
-- Tecumseh, Shawnee (Native American Quote)

“Remember, if you ever need a helping hand, it's at the end of your arm. As you get older, remember you have another hand: The first is to help yourself, the second is to help others.”
-- Audrey Hepburn (1929-1993), actress, humanitarian



"Heal The Earth" Mandala

When a white army battles Indians and wins, it
is called a great victory, but if they lose it
is called a massacre.

-- Chiksika, Shawnee (Native American Quote)

“As we express our gratitude, we must never forget that the highest appreciation is not to utter words, but to live by them.”
-- John Fitzgerald Kennedy (American 35th US President (1961-63), 1917-1963)

++++++++++++++

Peace to each one of you!!

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

9/16/2008

Endometriosis Blog: Coping Skills... What Are Your Favorites??


(Picture courtesy of Hammocks.com @ http://www.hammocks.com/)

We all have our favorite coping skills and methods for managing our chronic illnesses. We have methods for improving our quality of life, reducing pain, and remaining productive despite our limitations.

In this post, I'd like to ask readers for participation!!!

PLEASE post comments outlining your favorite coping techniques. This doesn't need to be anything elaborate or fancy.

I'll give some examples: drinking a cup of tea, listening to relaxing music, taking a hot bath, and talking with a supportive friend would be just a few examples of ways to manage chronic illness and improve quality of life as well.

Maybe you enjoy meditation. Perhaps you enjoy visualizing relaxing places... like a beach:


(Picture courtesy of wikipedia: http://en.wikipedia.org/wiki/Beach)

I'd really like to hear from readers on this. Many readers of this blog are wise, insightful, and experienced at coping with chronic illness. If you could take just a moment to share your successful tips for coping with chronic illnesses, for remaining productive without causing your body more harm/overdoing, and pinpointing methods for pain relief and relaxation (i.e. for me, acupuncture is VERY relaxing and definitely helps my pain)!!!

So... bring it on! Please! I really want to hear from you! Please share your ideas and tips. Let's see how many ideas we can come up with for coping with chronic illnesses!

I greatly appreciate your comments!!

"However much we are affected by the things of the world,
however deeply they may stir and stimulate us,
they become human for us only when we can discuss them with our fellows...
We humanize what is going on in the world and in ourselves only by speaking of it,
and in the course of speaking of it we learn to be human."
- Hanna Arendt in "Confiding"


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

9/12/2008

Endometriosis Blog: Infertility & Miscarriage --- "Letter To A Friend"

Below is a portion of a post by my friend Alicia on her blog. (Alicia has endometriosis and has experienced both infertility and miscarriage). After her post, you'll see my comment back to her below it.


Here is her blog address:

http://yayastuff.blogspot.com/

Since her post and my response are regarding infertility and miscarriage, I decided to include them on my blog. As Alicia as I are friends in addition to fellow bloggers and we belong to the same local endometriosis support group, I am calling this blog post "Letter to a friend".

In order for my comment to Alicia to make any sense, you need to see her blog post first.

See her post and my response below.

+++

Alicia's blog post:


Thursday, September 11, 2008

Why Am I Hiding?

I was just realizing that I've been stalling in terms of blogging lately. Is it that nothing is on my mind? Or is it that I'm scared to share the true thoughts of what's on my mind? I just looked through my previous blog posts and realized that of the 185 of them, there are 18 of them that I never published. Many of these have to do with infertility and miscarriage, and while it's clarifying in and of itself to write about these, I think I often choose not to publish them because these two topics are often seen as taboo in our society. They are the 'un-talked-about', the 'silent illness', the big elephant in the room, the shadow in the corner, or however you want to look at it. I pride myself on 'not caring what other people think', but then in seeing that I'm worried to post these types of things on MY blog where I can write whatever the heck I feel like, well, I'm just falling into the societal norms. I'm disregarding my true feelings on miscarriage and infertility for fear that it will make my readers uncomfortable. I wish that these two topics were more widely discussed in our culture. On the other side of the world, miscarried babies have their own shrine where people visit and leave toys and presents to the babies. That would never happen here in the western part of the world. Why? Why are we so scared to talk about these topics? Is it like the plague? Do people think that they will 'catch' miscarriage and/or infertility if they are willing to discuss it?
I recently attended another infertility support group meeting and it was amazing. You walk into a room where everyone knows what you are thinking, without saying anything. You walk into a room of acceptance where you can talk about missing your babies you've lost to miscarriage, and the other people in the room don't shudder in non-acceptance. It's an awesome feeling, to feel real, to feel validated, to feel heard. To be seen, truly seen, all of you. Infertility and miscarriage are consuming, dominating, controlling of all aspects of life. Why am I walking through life trying to hide these huge parts of me?

+++

My comment back to Alicia's blog post:


Endometriosis Blog: Infertility & Miscarriage --- "Letter To A Friend"

Friday, September 12, 2008

Alicia,

You are just so amazing. You are inspiring, brave, refreshingly honest, open, strong, kind, and insightful. When I read posts like this, I get very emotional. You are good at putting tears in my eyes. I mean that in the best possible way.

As you know, I have talked with many women from the local support group about both infertility and miscarriage. Unfortunately, endometriosis causes both of these to be more common.

What's amazing about you is that you are able to face things head on in a way many others can't or fear to. What's amazing about you is that you say what other people may just think in their heads. What's amazing about you is that you recognize the taboos in our society that are just plain wrong and you bring those subjects out into the open. I try to do the same thing with endometriosis.

I try to make people comfortable talking about it, hearing about it, understanding what it is and how it affects women and their familes (and their employers... and their extended families… and society)...

I try my best to speak out about things like infertility and miscarriage too... because I have heard SO MANY stories of pain and suffering and because I feel SO badly for couples who face this terribly challenging, emotional roller coaster ride.

Sometimes I myself am “too careful” precisely because I have heard the intense suffering of so many people.

As you know, I tried not to talk about my daughter to you (or have you hear her in the background on phone calls with you) back when you had just miscarried because I didn't want to be insensitive and remind you of all of the hurt and pain associated with your miscarriage by talking about my healthy daughter.

I now know from talking with you and seeing you return to work as a nanny that you are at peace with it. THAT IS WONDERFUL!

I wish that all couples who have been through miscarriage or infertility could be so at peace with it as you are. Don't get me wrong! By "at peace with it" I don't mean to imply that I am underestimating your very strong desire for a child!! I am NOT doing that!

What I mean is that you have a really extraordinarily healthy attitude about everything that is, frankly, sometimes astounding to me.

I have spoken with many women (and couples) who have been through these painful experiences. I must say that not all of them are anywhere near as open about it as you. Many are not. While the people at the infertility support group meeting you mentioned were "on the same page" with you, I know there are other infertile couples dealing with the pain quietly at home. The people who attend such meetings tend to be the ones who are open in a similar manner to you about these topics.

A friend of mine who has had 2 miscarriages and has battled infertility since then recently talked with me about the idea of attending an infertility support group. While she was open to it, her husband was not. She would have definitely gone if he was open to it but wasn't really comfortable going to a meeting without him.

Everyone is different. I ABSOLUTELY agree with you that our society is wrong about making people feel stigmatized about the topics of miscarriage and infertility!!! I agree with you that it's terribly unfortunate and such stigma DOES HAPPEN.

I know of women who attend our local endometriosis support group and/or who attend the local infertility support group (with or without their partners present) and they have found HUGE relief and support from talking with others. I wish that such groups could help everyone who experiences such a crushing loss... but I am not them and they are not me. Everyone is different. Everyone has their own coping style. Each person has her/her own way of grieving. There is no right or wrong way of doing that.

You know me. I believe that being open, attending support groups, talking about these issues is healthy and prevents “stuffing” emotions and potentially causing psychological self-harm.

HOWEVER, for some people who go through this... support groups and blogging are not the right answer. For some people these issues are intensely private and they have a right to be private about it if that's how they feel.

The trick for people who have not experienced infertility or who have not experienced miscarriage is being able to distinguish between people like you who are very open and want to talk about it and those who fall into the more "private-coping" category!

It is very hard sometimes to know which camp someone falls into. (Other times it’s pretty obvious). Until you said certain things to me (after your miscarriage) that I perceived as "a green light" to talk about children, babies, and my own daughter... I was careful when talking with you! I now know that probably wasn't necessary. (Well, maybe in the beginning after you first had a miscarriage even you might not have appreciated being inundated with baby/child talk, right??)

Other local support group members who have or have had infertility and/or miscarriage have held up very clear "red flags" that have made me careful about what I do or don't say in their presence... or even if I'll take a call from a local support group member who I know is infertile when my daughter is near the phone and easily audible through the phone!

I don't think it's black and white. I think for some people it's black & white in the sense that they are open ("green light") or “not open”/private about it ("red light"). Others seem to float back and forth. Some days their mood and circumstances allow them to feel more open. Others times (such as immediately following some sort of loss), they may feel more inclined to be private.

I ABSOLUTELY agree with you that as a society we should NOT make couples going through these situations feel uncomfortable talking about it! That isolation and/or stigma compounds the grief and loss!

At the same time, I'm not sure that your coping skills would work for every woman who has had a miscarriage. Am I making sense? I ABSOLUTELY hear what you're saying on this amazing and thought-provoking post. I just don't know if everyone has the same coping skills that you do --- to be able to be so open.

At the risk of sounding judgmental (not my intent!), some people who aren't “open” could probably benefit from being more open --- BUT some people really and truly need to deal with their losses privately because that's their style, personality, or way of coping.

So, I AGREE that our society needs to be educated about these issues, needs to be more open, and needs to embrace couples going through this. I also believe that couples going through this need to give clear signals to others as to which camp they are in (red light vs. green light).

If healthy, supportive communication about these topics is to happen, everyone needs to be on the same page about who wants to be open and talk vs. who wants to be private and not talk with just “anyone” about it publicly. It's very tricky.

Some people don't talk publicly about it but DO seek counseling from trained professionals who can provide support and coping skills. Some couples are like you… very open. Some are into support group meetings. Others aren't.

I AGREE with you 100% that we as a society need to provide that support, respect and listening ear for those couples who **DO** want to talk about it. I'm just not sure all couples going through it do, though.

Part of why some don't, I think, is precisely because of our society's warped way of not dealing well with these issues. Our society has become very preoccupied with pregnancy and babies. Think of the countdowns to when Tom Cruise and Katie Holmes’s baby would be born or when Jennifer Lopez would give birth. Our society puts such emphasis on Angelina Jolie and Brad Pitt's family planning or "baby bumps" on celebrities and I think that kind of thing just makes infertile couples or those that have gone through a miscarriage feel even worse! Our society has a strange way of framing parenting, childbirth, infertility, and miscarriage.

Other countries do handle it differently. Western society is behind on this… in my opinion.

I remember when my friend miscarried when she and I were in our 20s… and I mentioned getting a card for her. My mother said, "Oh, Jeanne… that wouldn't be appropriate"... and I thought, "why not?!" If I miscarried, I would perceive a card from a friend as a sign of support and kindness. My mother, on the other hand, thought it would be upsetting to her or "breaking etiquette rules" and that a card would only be appropriate for “other types of death”.

The way I see it death is death. If a woman/couple is excited and happy and thrilled about a pregnancy and then a miscarriage occurs, that is a huge loss! A death has occurred. I'm not talking about the whole controversy over when conception begins or any of that stuff. (I wouldn’t touch that topic on this blog with a 10 foot pole)!

I'm talking right now about the death of the dream that the couple had. There is profound sadness and grief... probably even more so than the grief one would have for someone who had lived a good, long life!

So I think it's a confusing issue for many. I think our society has much room for improvement on these issues. I know when you had a miscarriage that I struggled to give you the best support I knew how.

Part of why I tried so hard to support you is because it's the right thing to do and I believe that all in our society should provide the best comfort they can to couples who go through this. Part of my empathy was because I've heard SO MANY stories of grief and loss from support group members and from my friends/family members. Part of that was I knew how crushing a blow it was to you after years of infertility and I desperately wanted to do ANYTHING I could to help you, support you, assist you in finding helpful resources for coping, etc. I'm honestly not sure most people in society are equipped to provide that kind of support. If it weren't for my being an endometriosis support group leader for 7 years now, I would not have been able to help you in the manner that I did after your miscarriage.

Our society needs to be educated. Wonderful posts like yours go a long way towards that. I am so proud of you!

You are so strong, so compassionate, and just so downright amazing that you do bring tears to my eyes. Keep talking, keep blogging, keep being open, and keep giving clear signals of how your friends and family can best support you and Josh. You are a role model for so many women with your graceful, insightful, open-minded way of handling such adversity.

To miscarry after 5 years of infertility when you have an illness that makes you feel like your clock is ticking louder than most (endometriosis) and be able to be as strong as you are is really remarkable! I have seen many women go through these things but few have coped as well as you have. You have to realize that different people have different levels of coping skills and support. You have many, many friends and that must be very helpful to you. Honestly, not everyone has such a strong network of support as you do.

If you haven't had a chance to check out the widget for the "wear to make aware: infertility's common thread" campaign, see the sidebar of my blog to check it out.

Your positive attitude and strength will continue to carry you through --- just as they have so far... no matter what is in your future. You are one of the strongest people I've ever met! My thoughts and prayers are with you and keep doing what you're doing!!

Jeanne

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

9/11/2008

Endometriosis Blog: National Invisible Chronic Illness Awareness Week --- WE'RE LISTED ON THE BLOG ROLL OF THANKS!!

I was honored to see in today's Invisible Illness Week Blog (an email feed) that this blog is listed on Lisa Copen's "Blog Roll of Thanks" for blogging about National Invisible Chronic Illness Awareness Week and explaining to the chronic illness community how this blog relates to Chronic Illness Week.

Since I just began blogging on June 1, 2008... this was the first year I had heard of or participated in National Invisible Chronic Illness Awareness Week.

I cannot stress enough the amount of information available from this organization. I have listened in on some of the live seminars (and participated in the conversations on a couple of them on live calls) and I am really impressed with the quality of information and just how much the people facilitating these chronic illness seminars "get it".

It's amazing to me how much energy and information is being exchanged between so many people in just one week's time. There are hundreds of bloggers involved in this awareness week.

It's an opportunity for chronically ill patients to learn, get support, and network with other patients. There are a variety of websites that are offshoots of the main site.

Here is the main site that I've listed on other posts:

http://www.invisibleillness.com

In addition to patients getting support and information... it's a chance for chronically ill bloggers to connect with each other, compare stories, share information, and improve the quality of their own blogs by what they learn from other chronically ill bloggers.

There is a vast amount of information available during this awareness week on a wide variety of chronic illnesses.

I really like the way the seminars cover not just info for patients but info for their loved ones and support people too.

Chronic illness affects marriages, families and relationships too.

While patients clearly need support, so do their loved ones!

I urge you to check out the seminars available online at the following site:

http://www.invisibleillnessconference.com

Some of the seminars have already taken place and some are yet to come today and tomorrow. However, all 20 seminars are going to be available archived online. So if you missed one, you'll still be able to hear it.

As I mentioned yesterday, many readers here will especially appreciate this seminar:

Jenni Saake's seminar on: "Medications, Illness, Fertility and the Desire for Motherhood"

I believe there are numerous seminars that may interest you. So take a peek at what's available and see if something catches your eye. I have only heard a couple of them so far but the ones I heard were great.

It's great to get such wonderful support in the comfort of our own homes. Since many chronically ill patients find travel difficult (due to pain level, financial obstacles, chemical sensitivities, and any other number of reasons), it's really nice to participate in an awareness week with seminars comparable to what one would find at an in-person conference...

The difference is that there's no airfare, gas money, conference fee, or even leaving home to participate!!

I highly recommend checking out what the main website and seminar website have to offer.

Here again are those websites:

http://www.invisibleillness.com
main site

http://www.invisibleillnessconference.com/
seminars/how to access blogtalkradio archives

I heard quite a bit of buzz about this awareness week on chronic illness blogs in the last few weeks. After participating in this awareness week myself, I now understand what the buzz was about.

See related links:

Sunday, September 7, 2008 Endometriosis Blog: Tomorrow is DAY ONE of National Invisible Chronic Illness Awareness Week 2008!!

Monday, September 8, 2008 Endometriosis Blog: ***TODAY*** Kicks Off National Invisible Chronic Illness Awareness Week 2008!!

Tuesday, September 9, 2008 Endometriosis Blog: National Invisible Chronic Illness Awareness Week - Shameless Plugs For Their Merchandise

Wednesday, September 10, 2008 Endometriosis Blog: National Invisible Chronic Illness Awareness Week - "Medications, Illness, Fertility and the Desire for Motherhood"

There is a great deal of information in one place, for free, and available online. You can't beat that!

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

9/10/2008

Endometriosis Blog: National Invisible Chronic Illness Awareness Week - "Medications, Illness, Fertility and the Desire for Motherhood"

As mentioned in previous posts, this week's events for National Invisible Chronic Illness Awareness Week include online seminars. Callers can dial in and talk about various chronic illness-related topics.

Yesterday there was a seminar on "Medications, Illness, Fertility and the Desire for Motherhood" with Jenni Saake. (I was unavailable to participate at the time of Jenni's seminar but thankfully all of this week's seminars are available in the blogtalkradio archives)!!!

I had posted a general comment on the II forum yesterday (II is commonly used this week as an abbreviation for "Invisible Illness").

Then, last night, Jenni posted a comment on this blog (see Jenni Saake's comment in the comments section of Tuesday, September 9, 2008 Endometriosis Blog: National Invisible Chronic Illness Awareness Week - Shameless Plugs For Their Merchandise). She had seen my comment and had tracked down this blog since the "endometriosis" topic got her attention.

I have since listened to Jenni Saake's seminar and I'm sure many of our readers will find it helpful!!! If you are interested in listening to it, you'll simply need to register for a blogtalkradio login (a quick process)... and then login to blogtalkradio when you're ready to listen to archived seminars like this one.


The name of Jenni Saake's seminar is:
"Medications, Illness, Fertility and the Desire for Motherhood".

Here's a description of the show (as listed on blogtalkradio):

Wondering if you should consider parenthood with your illness? Concerned about your fertility as well as the impact of medications? Jennifer Saake has lived 18 years of illness, with infertility for 10 of those years. Balancing both conditions includes: medication side effects (illness meds on fertility and fertility meds on illness), questioning sanity of wanting desperately to have children yet fearing how she would care for them when she can hardly care for herself, facing the frustration of attempted adoption when her health makes her less "marketable." She has written a book on infertility and loss and is praying about someday writing a book on living with chronic illness.


I encourage you to check out Jenni Saake's talk on blogtalkradio by logging in as described above. With Jenni Saake's personal experience with endometriosis, fibromyalgia, chronic fatigue syndrome (CFIDS), hormonally-induced panic attacks, infertility issues, investigating adoption, miscarriages, PCO (polycystic ovarian syndrome), surgery, pre-diabetic condition, artificial insemination, etc... I'm sure many readers here will have a great appreciation for Jenni Saake's compelling story!

Jenni's story is engrossing, informative, and very worthwhile listening! Please consider listening to this fantastic program!!

Here are two of her sites that she mentioned during the program:

http://www.hannahshopebook.com/
http://www.harvestinghope.blogspot.com/

This is a wonderful seminar that will appeal to many readers of this blog!!

See related posts regarding National Invisible Chronic Illness Awareness Week:

Sunday, September 7, 2008 Endometriosis Blog: Tomorrow is DAY ONE of National Invisible Chronic Illness Awareness Week 2008!!

Monday, September 8, 2008 Endometriosis Blog: ***TODAY*** Kicks Off National Invisible Chronic Illness Awareness Week 2008!!

Tuesday, September 9, 2008 Endometriosis Blog: National Invisible Chronic Illness Awareness Week - Shameless Plugs For Their Merchandise


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

9/09/2008

Endometriosis Blog: National Invisible Chronic Illness Awareness Week - Shameless Plugs For Their Merchandise

If you visit the website for the National Invisible Chronic Illness Awareness Week 2008, you'll see many items that may interest you.

I'll include a small sampling of item examples on this post. See website below for more.

http://www.invisibleillness.com

There are T-shirts, license plate holders that say "www.invisibleillness.com" on them, mugs, static cling stickers for vehicle windows (at just $3.00 apiece!), etc.

By the way... please note that I don't get compensated in any way for directing people to these products. They looked good to me and I'm just passing that information along.

Here is a close up of the text on a T-shirt they are selling:



Here are some more images of items that might appeal to some of you. Just double click on the images to enlarge the pictures!



However, the best way to view the selection of merchandise is to simply view their site:

http://www.invisibleillness.com

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

9/08/2008

Endometriosis Blog: ***TODAY*** Kicks Off National Invisible Chronic Illness Awareness Week 2008!!

Today kicks off National Invisible Chronic Illness Awareness Week 2008!

I dialed in today and chatted with Christine Miserandino and Lisa Copen. What a pleasure it was to talk with these two women... who had some great insights and thought-provoking comments!

Christine (aka "The Spoon Lady") wrote "The Spoon Theory". See it on her website:

http://www.butyoudontlooksick.com/

Lisa is the Executive Director of Rest Ministries, Inc. It's my understanding from what I've read on http://www.invisibleillness.com that she is responsible for creating National Invisible Chronic Illness Week.

I dialed in (see the http://www.invisibleillness.com site for how to dial into the seminars). They took my call and we discussed numerous things. We kept things very positive... to the extent that we actually discussed ways in which illnesses can be a blessing and can help us to be more focused, appreciate the little things more, and "take things in" in a way that we might not otherwise!

Please see yesterday's related post:

Sunday, September 7, 2008 Endometriosis Blog: Tomorrow is DAY ONE of National Invisible Chronic Illness Awareness Week 2008!!

Yesterday's post includes an excellent video clip in the post that I HIGHLY recommend!!

There is just so much going on in conjunction with this chronic illness awareness week that the best thing I can suggest is to just visit the website below and explore it yourself.

***** It is just loaded with information! *****

http://www.invisibleillness.com


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

9/07/2008

Endometriosis Blog: Tomorrow is DAY ONE of National Invisible Chronic Illness Awareness Week 2008!!

September 8, 2008 kicks off National Invisible Chronic Illness Awareness Week 2008!

******************UPDATE:***************
Interested in this week's online seminars?????
See this site for schedule information!!
www.invisibleillnessconference.com


Please see press release below ("Chronically Ill Enthusiastically Anticipate Virtual Internet Conference Sept 8-12"):

http://www.sbwire.com/news/view/21215

In the right sidebar, you'll see a link (under the rollercoaster logo) to a remarkable video! I cannot tell you how amazing this video is. It made me cry. It's a fantastic, comprehensive way to help people "get it" regarding chronic illness AND to help the chronically ill feel less alone.

Please take a couple of minutes to watch the video. I know you'll be glad you did!!

Here (below) is the same video clip referenced in the right sidebar. (I wanted to be sure to post it in both spots. It's awesome)!


Find more videos like this on Illness-Disability-Healthcare-Caregiver Ministry Network


I'm excited to be blogging about National Invisible Chronic Illness Awareness Week 2008!

Visit their website for more information about online seminars all this week and so much more...

www.invisibleillness.com

To attend a chronic illness conference without leaving the comfort of our homes is something I'm sure anyone reading this blog can appreciate!

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

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

I just wanted to let readers know that the previous YouTube section of this blog has been deleted. It has been replaced with a new YouTube video clip section.

See the new YouTube video clips in the right sidebar under:

YouTube Video Clips: Endometriosis AND Other Chronic Illnesses


The previous YouTube clips were randomly pulled from YouTube using keywords like "endometriosis", "pelvic pain", and "fibromyalgia". There were also some ads that were interspersed between the clips on the previous YouTube clip section and everything then appeared in a rotating slideshow.

The new YouTube section currently contains video clips that I handpicked. While some ads may get added in later, right now the video clips showing are just ones that I selected.

I should pause at this point to apologize to anyone who had the misfortune of viewing my YouTube video clips last evening. YouTube does have a filter that is supposed to screen out objectionable material. It didn't work last night and I was a bit stunned at a couple of the video clips that were on my screen when I went on my blog last night!

Let's just say that the video clips that appeared last night were randomly selected by YouTube using keywords (not just ones like what I referenced above but also content words from within this blog). So (apparently) since this blog contains gynecological terms... when the filter isn't working (as I discovered last night), some inappropriate clips can appear! I'm sorry if anyone else had the misfortune of logging on last night and seeing them. I immediately deleted that slideshow last night.

Fortunately, I had already been working on putting together the new YouTube section for a few days before that. So I finished and installed the new YouTube section last night. The new YouTube video clips are ones I selected that I thought would be of interest to readers. (Hopefully if ads do get mixed in with the clips later I will be able to find a more effective way of screening out clips that are inappropriate for this blog).

There are 10 clips on the new YouTube area. Topics covered include some that will look familiar and others which are totally new.

One that may look familiar from the old slideshow (that I had found fascinating and didn't want to lose in the new YouTube area) is on a surgical treatment for endometriosis called "autofluorescence diagnosis of endo" or "spectral endoscopy".

In addition, topics covered in the video clips include the following: chronic pain/illness in general, fibromyalgia, chronic fatigue syndrome, the value of support networks/groups, interstitial cystitis, infertility, multiple chemical sensitivity syndrome, and mindfulness meditation with a clip of Dr. Jon Kabat-Zinn. Many of the illnesses I just mentioned are known to many readers of this blog as co-existing illnesses to endometriosis.

Another clip that will look familiar to those of you who saw the previous YouTube slideshow is the outstanding "Wild Horses" video clip about chronic illness and chronic pain. Accompanied by background music by Natasha Bedingfield, this clip is FANTASTIC and sure to be appreciated by anyone who is chronically ill (whether with endometriosis or otherwise). If you missed this clip the first time around, I highly recommend checking it out!

With these new YouTube video clips, you can toggle through to see the ones you want rather than waiting for them to automatically rotate as they did previously. To do so... simply click on the arrow symbol on either side of the video screen (about halfway down the screen). The left arrow will take you to the previous clip and the right arrow will take you forward to the next clip available for viewing.

If I'm not mistaken, you can also expand the size of the video clip by double clicking on the clip you want to see. (I was pretty tired last night when I completed this so maybe I dreamed it! I'm honestly too tired to check now so I'll let you explore the clips on your own). :)

I think these video clips are helpful for a couple of reasons. One is that they give a 'visual' that may be a bit more exciting to look at than than just reading text. Another reason is that they explain things in a way that I probably couldn't do justice to in print. Finally, I know when I'm tired and/or in pain that it's sometimes easier to watch a video clip than to read about the same topic. So the clips may be helpful in that way too!

I'll be anxious to hear your feedback on the new video clips. I hope you like them.

For previous posts on the topic of video clips --- on endometriosis and other chronic illness-related topics --- please see the following posts:

FRIDAY, JUNE 6, 2008 Video Clip: Lack of Endometriosis Surgery Reimbursement in the US (*** Please read the disclaimer at the top of this blog.***)

MONDAY, JUNE 9, 2008 YouTube Video Clips --- Endo, Infertility, Chronic Pain, Pelvic Pain...

MONDAY, JULY 14, 2008 Jeanne's Endo Blog: YouTube Video Clips --- Endo, Infertility, Chronic Pain, Pelvic Pain... ***PART TWO***

FRIDAY, JULY 18, 2008 Endometriosis & Chronic Illness/Pain: YouTube Video Has Touched Many!!!


Let me know what you think! :)

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

9/03/2008

Endometriosis Blog: "Almost Rosey" -- The Healing & Supportive Power Of Music And Other Relaxation Techniques (Video Clip Included)

I thought it was time to lighten things up a bit. Sometimes taking a break from information-gathering, doctor appointments, and stress can help us cope better with endometriosis & other chronic illnesses.


I'd like to start by sharing a gorgeous photo I found awhile back:



Photo used with permission from Mimbrava - www.Flickr.com


This red rose photo ties together nicely with a post I've been wanting to write for awhile now. As many of you are already aware from what I have written previously I am a huge fan of Tori Amos, the musician.

It just so happens Tori has endometriosis. So I'm using that as my excuse to write a post featuring some lyrics from her song: 'Almost Rosey' (from the American Doll Posse CD).

Before I get into any lyrics or my interpretation of them and what they do to inspire me and to give me strength during the especially tough times, I just want to lay the foundation for WHY I'm writing about this here on the blog... (other than my love of Tori Amos' music).

Over 7 years of facilitating a local endometriosis support group, I have noticed that MANY of our support group members share a common thread. For some it has to do with upbringing. For some it's a personal philosophy. For others, it's the only way they know how to cope with this challenging illness.

The common thread I've noticed for most endometriosis patients is that they often:

  • Put others first before themselves

  • Forget to practice self-care on a frequent enough basis to maintain their health (or progress to a greater state of wellness)

  • Often they "run themselves totally ragged"


  • Let me be clear that I don't sit in judgment of anyone (!!) and I know how very difficult it is to balance home/personal life, work life (for those still well enough to pursue a career outside the home or those who manage to work from home), social life/obligations, chronic illness(es) and the many other commitments that take up our precious time nowadays. There never seem to be enough hours in the day!

    An endometriosis patient may be:

  • employed in the traditional workforce

  • disabled

  • unemployed

  • a stay-at-home-mom (SAHM)

  • a work-at-home-mom (WAHM)... [I know -- all moms work at home. By WAHM, I'm referring to women who work in the home via telecommuting, running their own businesses, etc...]


  • I have observed that ALL women nowadays (that I know) are feeling the pressure of many demands on their time and this typically just becomes much *more* challenging for the chronically ill.

    OK... back to some of the music that gets me through some of my roughest days! I should point out that the music that works for me may not be most effective for you for coping with illness, stress and/or anxiety. The important thing is that most of us have SOME sort of music we find relaxing, inspirational, supportive, or even cheerful. Sometimes the lyrics really strike us and provide extra comfort. Sometimes it's the melody, the beat, or maybe an outstanding vocalist. Many times it's all of the above.

    OK. It's time for me to list the lyrics for "Almost Rosey" and explain what they mean to me personally. They may certainly mean different things to different people but I'll talk about how the lyrics strike me. Obviously this is just one interpretation.

    *Let me give just a bit more background on why I'm including lyrics for this particular song.*

    Many women I know (from my local endometriosis support group, healthy friends & relatives, former co-workers, blogger friends, etc.), myself included, have times when they really push their limits physically, mentally, or both! Self-care is key. A support network of some kind is key.

    You may have heard phrases like "grin and bear it" or "put on your happy face" or "be strong/don't let 'them' know they've gotten to you".

    While there are certainly times in life when we all need to do things we don't want to do, to even do things we're concerned may cause injury or exacerbation of existing illnesses, and to do things that are simply necessary for basic functioning... there are definitely other times when it's in our best interest (and/or that of our loved ones... whether they know it or not!) NOT to push too hard and NOT to overwork! Knowing when to back off and when to push ahead is a tricky balancing act. Taking pains NOT to overdo can prevent suffering & sometimes even permanent pain afterwards, etc.)

    Many women have a REALLY tough time slowing down, pacing themselves, and saving precious energy for the things that REALLY matter!

    OK. Here's where this song is one of my favorites to play when I need a pick-me-up.

    Here is a video clip of an amazing live rendition of this beautiful song:





    Below are the lyrics to "Almost Rosey". I have bolded portions I find particularly helpful to me for insights into how people (women and men) sometimes "put on a happy mask", isolate themselves from support when they need it most, etc. My comments are in italics.

    I should note that simply reading the lyrics off the page may sound anything but "rosey" or cheerful. However, knowing Tori's body of work for over 15 years, reading between the lines of the lyrics, knowing she is about as far from a "phony" or "fake" person as can be, and hearing the beautiful melody and soothing sound of the music on this song softens it immensely. Tori is a complex person and her lyrics can be deceiving. For example, her talk of putting rose colored glasses on to cope with things is NOT, in my opinion, implying that one should stick his/her head in the sand!! Quite the opposite... Tori bravely faces things head on! My comments on the lyrics will be in italics next to the lyrics I've bolded in the song...

    +++

    » 'Almost Rosey' Lyrics

    [This Section features Lyrics of the Song 'Almost Rosey' from the Album American Doll Posse]:

    Just a minute of your time
    Yes I've been known to delude myself
    So let me put those rose colored glasses to the test
    (I believe this is her way of saying let's cope with these problems rather than avoiding them).

    Now is this real enough for you
    'cause blondes here don't jump out of cakes
    If that never impressed you much
    Come board this lunatic express

    Just why do they say
    Have a nice day anyway
    We both know they wouldn't mind
    If I just curled up and died
    Let's not give that one a try
    (I think this section is Tori's way of observing how fake people can be when they exchange pleasantries they don't mean, when they act insincerely, and when they generally disregard -too often - others' well-being).

    Chin up put on a pair of these roseys
    Raise those blinds
    Chin up a happy mask was never
    Your best disguise
    Chin up put on a pair of these roseys
    In no time you will feel almost fine
    (I believe Tori is offering coping skills to either herself or someone else. She seems to be trying to fight the urge to isolate and "close the blinds". She recognizes that stuffing emotions and putting on a "happy mask' is not healthy. She wants things to start looking up and believes things WILL get better).

    Almost rosey

    Now some girls here will huddle with
    No not footballers that are rich
    But will confide in small white sticks
    He bats as The Virginian Slim

    Then I tried once to comply
    With an authority that would
    Subsidize my wild side
    But at this altar was sacrificed

    Yes you can laugh a femme fatale
    In a bride's dress now married to
    The effortlessness of the cracks
    That lie now in between the facts
    (Here again I believe Tori is speaking out against dishonesty in any form... including being phony/fake or insincere).

    Now about when violet died
    The cause still unidentified
    She thought her love would be enough
    But you can't seduce seduction

    Her tentacles of endless want
    Reach through my corridors
    And tempt me to taste of her power
    I sober with the witching hour

    And when I hear of one more bomb
    Yes we have all been robbed of song
    And nightingales who throw their arms up
    When is enough enough?
    (To me this passage is pro-peace, for saving the Earth from irreparable harm caused by war and environmental issues. Obviously birds don't have arms but I think the point is clear that she's concerned about the condition the Earth is in and wants very much to improve it).

    ---
    [ Almost Rosey Lyrics @ http://www.toriamoslyrics.org/ ]

    Tori Amos
    Almost Rosey lyrics are copyright by it's rightful owner. This Tori Amos Lyrics
    site (http://www.toriamoslyrics.org/almost-rosey-lyrics-tori-amos.php)
    in no way takes copyright or claims the lyrics belong to us.

    © 2008 Tori Amos Lyrics.org, All rights
    reserved.
    ---

    See my post: Sunday, June 15, 2008 - What is My Connection to Tori Amos??

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

    9/01/2008

    Endometriosis Blog: Fibromyalgia Awareness

    Thanks to Sherril Johnson, I am now aware of the ILAP (International Leaders Against Pain) 2008 program she attended and the National Fibromyalgia Association's "Pledge To Care".

    As many readers of my blog know, fibromyalgia is a co-existing illness for many endometriosis patients. I have fibromyalgia myself.

    I encourage you to read Sherril's informative Sunday August 31, 2008 post: "ILAP 2008 - The Pledge to Care".

    I have added a widget for this campaign in the sidebar of this blog. If you click on it, it will route you right to the National Fibromyalgia Association's website (or just click below):

    http://www.fmaware.org/site/PageServer

    Please see Sherril Johnson's invisible chronic illness blog for more information:

    http://theiciexperience.blogspot.com/

    Thank you to Sherril Johnson for bringing attention to this important information!!


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

    HAVE YOU SIGNED YET?? Please Sign Endometriosis Awareness Petition Below! Awareness YEAR-ROUND!