Helping women with chronic illnesses

Category — Interstitial Cystitis

Depression Breakthrough?

Normally, I go out of my way not to write about specific pharmaceutical drugs or health care practitioners on my blog. However, rules are made to be broken and I have decided this is one case where I am comfortable breaking my own rules.

A friend sent me the following link:

New Form Of Ketamine Treats Depression “Like Magic”

The above article talks of research published August 20th in the prestigious medical journal, Science. I attempted to find the original source for this story (that Science article) but when I searched for the article on their site, I found this:

Antidepressant Action of Ketamine
Science 20 August 2010
329: 883 [DOI: 10.1126/science.329.5994.883-d]
(in This Week in Science)

That article is not accessible for free. As I am not on a position to pay to see the Science article, I have had to content myself with Googling to read various links that refer to it. (Sometimes I miss my university days where I didn’t have to pay an arm and a leg every time I wanted to read a medical journal article).

In any event, if anyone reading this DOES have access to “Science”, would you please be so kind as to leave me a blog comment letting me know?

In the meantime, it is exciting to know that there is a potential treatment for depression that is supposed to be far faster-acting than previous treatments.

Here is an excerpt regarding the research published in the August 20, 2010 Science journal:

Senior author Dr Ronald Duman, professor of psychiatry and pharmacology at Yale, said that he and his team found that the drug not only improved the rats’ depression-like behaviors, it also restored connections between neurons or brain cells that had been damaged by chronic stress. They called this “synaptogenesis”.

They hope their findings will help to speed up the development of a safe and easy to administer version of ketamine, which has already proved to be effective in severely depressed patients, they said.

Mayo Clinic: Pain and depression: Is there a link?

I have written about suicide before on multiple occasions. Endochick and I have been receiving DAILY blog traffic on search strings like “endometriosis and suicide” for months now. In fact, that has been the most commonly searched phrase for my blog. It is a sobering thought for me.

I take this topic very seriously and always make sure to list the National Suicide Prevention Lifeline number in posts that mention suicide:

This number works 24/7, 365 days of the year in the U.S.

The website for this same organization is:

National Suicide Prevention Lifeline

Here is their Facebook page:

Facebook page for National Suicide Prevention Lifeline

I encourage readers outside the U.S. to post comments with similar suicide prevention hotline numbers.

If you’d like to see another post I came across recently about the topic of suicide, see below:

Suicide, Chronic Pain, Real People

The connection between chronic illness/pain and depression is a common one. No matter how alone you may feel, you are never alone. If you are having thoughts of suicide, PLEASE call this number: 1-800-273-TALK. The trained professionals there can help.

This post was written by Jeanne at Copyright © Jeanne — All rights reserved.

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August 21, 2010   21 Comments

Endometriosis Apathy?

Since 1982, I have lived with endometriosis. It took me 10 years to finally have a laparoscopy and be properly diagnosed with it but I have lived with it for 28 years now. It is important to me to begin by saying that I have met some of the most caring, compassionate, supportive, loving women in the endometriosis patient community (online and off). In the last two years online and in the years I participated in local (in person) endometriosis support groups (1992-2008), I have had the good fortune of meeting some of the most amazing people! It is important to me to note this up front because I am about to write what may end up being a controversial post. My purpose with this post is definitely not to upset anyone but to draw attention to a matter that I believe needs attention and analysis. So, I will be sharing my opinions here. In my daily activities online, I perceive an imbalance between endometriosis patient advocacy work and patient advocacy work for other chronic illnesses.

Before I proceed, I also want to be clear that I ordinarily am not a fan of comparing one illness to another or comparing one patient to another. Everyone is unique and different. At the same time, I believe that comparing and contrasting can sometimes be a useful means of getting context. Sometimes, comparison is helpful because it shines a light on differences that may indicate where there is room for improvement. So, please hold your hate mail and understand that I am writing this post (which I have been mulling around in my mind for many months) because I LOVE my fellow endometriosis patients very much.

That said, let me start by directing you to comments I exchanged with Jenn in the blog comments section for this post: MCS Letter To Oprah. See comments 5-8 for our exchange.

Over many months, I have observed a large imbalance between the level of patient advocacy work done on illnesses such as multiple chemical sensitivity (MCS) and ME/CFS and the patient advocacy work done by endometriosis patients. MCS and ME/CFS patients I encounter online daily are, as a general rule, more likely to engage in letter-writing campaigns, petition signing, and information sharing than endometriosis patients. These patients are very ill… just like endometriosis patients. These patients have poorly understood conditions… just like endometriosis patients. These patients are faced with many frustrations and challenges… just like endometriosis patients. However, for whatever reason, MCS and ME/CFS patients are more tightly organized in their advocacy (from my perception) despite the fact that many of them are ill enough to be housebound or even bed bound.

Let me give one example. I posted this XMRV retrovirus petition recently (a petition that many ME/CFS patients are interested in):

Graphic no longer exists

At the time I posted it (very recently), I believe it had about 40 signatures. It now has 893 signatures.

Our endometriosis petition was started in 2008. While it is wonderful that we have 633 signatures (many with passionate comments attached), I am left wondering why we don’t have far more signatures than that…

An estimated 89 MILLION women and girls worldwide have endometriosis!

“It is estimated that between 2 percent and 10 percent of American women – or 5.5 million women and girls – of childbearing age have endometriosis. This makes endometriosis more common than AIDS and more common than cancer. Endometriosis is one of the three major causes of female infertility”, as per Ohio State University Medical Center.

Now, my blog has far more endometriosis readers than ME/CFS readers. Yes, of course, the XMRV petition is posted all over the Internet. There again, though, endometriosis patients who wish to post the endometriosis petition can post it widely too. Many people reading this post already have posted the endometriosis petition badge on their sites. The thing is that if endometriosis patients were as well organized as ME/CFS patients or MCS patients, I firmly believe that the petition could be posted on far more sites and could have garnered far more signatures by now.

As I’ve watched the number of signatures on the XMRV petition multiplying exponentially, I could not help but wonder why I sometimes feel like I’m pulling teeth to garner signatures on the endometriosis awareness petition. Many people have worked hard to get the word out about that endometriosis petition and I’m not trying to take anything away from the fact that we’ve gotten 633 signatures to date. At the same time, I can’t help thinking that we should have more signatures than we do. We’re talking about a condition that is “more common than AIDS and more common than cancer”! I just don’t think enough people are seeing the petition. This is where the teamwork and organization comes into play. I hate to say it but my perception is that endometriosis patients are not as organized as some other patient populations. I’ve reached this conclusion after what I have seen online in the past two years.

To be clear… I would never, ever want anyone to feel that I am criticizing endometriosis patients in any way, shape, or form. Endometriosis patients have numerous hurdles and challenges because of their illness. Many endometriosis patients have co-existing illnesses such as fibromyalgia, interstitial cystitis, or irritable bowel syndrome (IBS)… to name a few. I understand this because I have all of the above (and then some) myself.

My goal with this post is to shine a spotlight on what I view as an opportunity… for endometriosis patients to engage in more teamwork, increased networking with fellow patients, and more information sharing. Having participated in endometriosis support group meetings (monthly, in person) from 1992-2008, I have met a great number of endometriosis patients in person. In blogging since 2008, I have “met” too many endometriosis patients to count online. My goal is to encourage endometriosis patients to think about whether there is anything they can do for the endometriosis cause that they haven’t.

To be sure, I don’t have a magic list of things people can do to take action. I am just including a few suggestions.

Five ways to help the endometriosis cause:

1) Please sign the endometriosis petition if you haven’t already. If you have already signed, why not ask your friends and loved ones to sign it too? There is strength in numbers. Signatures accompanied by personal comments are particularly effective.


2) Post the petition badge – such as the blue one above – on your site if you have a website or blog. This will give your readers the opportunity to support the endometriosis cause. (If you are interested in obtaining the code for the blue petition badge – which automatically counts up every time someone signs it – please simply leave a comment on this post and I’ll be happy to email the code to you. Then it’s just a quick copy/paste to have the same petition badge posted on your site)!

3) Don’t have a site? No problem! Why not share this link to the petition on your Facebook page, on Twitter, or in an email to friends and loved ones who might love a way to support you by supporting the endometriosis cause? (Loved ones are often grateful for a tangible way to help endometriosis patients… since this illness can cause feelings of helplessness).

4) If you haven’t already done so, check out this post: Endometriosis Advocacy and the Media (Re-post). It explains a case where we put the petition to use in pressuring the media to correct errors that were printed about endometriosis – in a syndicated column that was written by a gynecologist! Our voices were heard by the editorial staff of this newspaper!

5) Last but most certainly not least, please contact Endochick (see email address below) regarding the endometriosis research she is conducting as part of her graduate school studies in pursuit of a Patient Safety degree. She cares very deeply about endometriosis and is working to improve communication between endometriosis patients and physicians, among other things.

If interested in the endometriosis research mentioned in the post above, please e-mail:


Please remove the space between endochick and 80 when e-mailing and put RESEARCH in the subject line.

This is just a very short list that may serve as a jumping off point. I don’t have any magic answers for how endometriosis patients can get better organized and become more involved in advocacy work on behalf of the endometriosis cause (and the 89 million patients worldwide who have endometriosis). I realize that many endometriosis patients are too sick, busy, and tired to become tireless advocates for endometriosis.

I also strongly believe that every little bit helps.

If enough endometriosis patients join forces and work together as a team, endometriosis advocates could become every bit as effective as the multiple chemical sensitivity (MCS) advocates and ME/CFS advocates I encounter online every day. When I see friends online who are multiple chemical sensitivity (MCS) or myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) patients (many who are housebound or even bed bound) who are writing letters, calling their legislators, signing petitions, etc., I cannot help but wonder why there is so much less of this activism with endometriosis patients.

Helping the cause doesn’t necessarily have to be time-consuming! Signing the petition takes just moments. Posting it on a blog takes moments too.

Contacting Endochick is fast and easy!

Again, here is her email address:

Endochick’s e-mail “endochick” (just remove the space between endochick and 80 when e-mailing)

I strongly encourage endometriosis patients to contact her regarding her endometriosis research.

When I picked the title for this blog post, I did not mean to upset anyone. I named it “Endometriosis Apathy?” because I KNOW how passionate endometriosis patients are but I don’t see the same level of patient advocacy for endometriosis as for some other chronic illnesses. Actions speak louder than words. I have heard, in words, how utterly devastating endometriosis is for patients. I would love to see the passionate words that have been expressed to me again and again turned into action on behalf of the endometriosis cause… and the 89 million patients who live with it.

Any one of us alone can be left feeling like we might as well be climbing mountains when we ponder the idea of doing advocacy work for endometriosis. It’s true that many of us are not physically capable of climbing mountains in the literal sense. However, I believe that working together enables us to “climb mountains”.

By getting more tightly organized as a team of passionate advocates, we CAN make a difference. Let’s do it!

This post was written by Jeanne at Copyright © Jeanne — All rights reserved.

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August 1, 2010   21 Comments

Travel Triumph!

Woo hoo! We traveled and it actually went smoothly! (Note to self: has something frozen over?) Traveling and chronic pain/illness can be a real mismatch. So, it’s always great when it works out!

Behold venue number one, the Columbus Museum of Art:

Photo credit: My dear husband. (Photo taken with permission at the Chihuly exhibition at the Columbus Museum of Art, Columbus, Ohio)

I find music and art to be very healing. Longtime readers who have seen my previous posts about Dale Chihuly’s work (or anyone who has ever looked at the Music, Art, Fun & Inspiration section of my blog) know how much I love Dale Chihuly’s artwork.

Photo credit courtesy of moi (Chihuly exhibition at the Columbus Museum of Art).

In years past, we had seen Chihuly exhibitions in New York (short drive) and Florida (when we were there on a trip) prior to checking out Chihuly in Columbus. When I heard a Chihuly exhibition was going to be two states away, my immediate reaction was, “Let’s go!” Then, the part of my brain that is practical and logical kicked in. This would be the greatest amount of car travel I had done in many years! I had to give some serious thought as to whether this was a wise idea.

Photo credit: My dear husband. (Photo from the Chihuly exhibition at the Columbus Museum of Art).

Due to my multiple chemical sensitivity (MCS), an overnight stay in a hotel is out of the question. (By the way, I apologize to my readers for writing just two out of three posts last summer – about traveling with chronic illness – and never getting around to writing the third one; it will cover our ill-fated attempt to stay at a Bed & Breakfast. Let’s just say that it was not an MCS-friendly experience!) So, I will have to get part three posted but the first two parts were Chronic Travel and Chronic Travel Encore.

In any event, traveling when one doesn’t have a safe place to stay overnight presents some interesting challenges. While it wasn’t easy, we decided to do our Columbus trip all in one day. That meant 14 hours of driving plus viewing artwork at three different locations in Columbus. This was an ambitious trip! Desperate times call for desperate measures. My husband and I discussed the logistics many times and decided to go for it. It worked out well and I’m so glad we did! (Thank goodness the vast majority of it involved air conditioning as it reached 91 degrees Fahrenheit that day).

Destination? Columbus!

Let’s just say I didn’t linger in the greenhouses at Franklin Conservatory (see more about Franklin below)!

Photo credit: dear husband. Venue: Franklin Park Conservatory.

I did finally find some latex-free compression hose before the trip (prescribed by my cardiologist to help the blood return from my feet to my heart and decrease the odds of me fainting). For more information about my experiences with heat intolerance and fainting, please see my dysautonomia series. I also did a bladder instillation for my interstitial cystitis (IC) before we left for Ohio. We wanted to keep the rest stops to a minimum for sake of time. The fact that my endometriosis cooperated was absolutely stunning. I can’t recall a trip since I was thirteen years old where this was the case. Everything just fell into place for this trip.

Fortunately for me, my husband willingly did the vast majority of the driving. I could never have done a road trip like this (especially on this timeline) without my husband taking the brunt of the driving. I did some driving while he slept but he did most of it. We had to get up at 4:00 am to get out of the house in time to make this trip a reality. (Anyone who knows that my insomnia makes 4:00 am more likely to be the time I am starting to sleep than waking up for the day knows that we REALLY wanted to make this trip happen)!

Behold venue number two… Franklin Park Conservatory:

I wouldn’t mind a skylight like this in my house. How about you?

Photos above courtesy of dear husband and me.

Note to MCS readers: Franklin Conservatory is not pesticide-free. After a lengthy phone conservation before the trip with a gentleman who works there, it became evident that they use beneficial insects in the greenhouses and make an effort to keep pesticide use to a minimum. While I was not thrilled with being near any pesticide (minimal or not) and while this venue certainly might not have been an option for some people, I decided to go to Franklin Conservatory. I did not have any MCS symptoms and we kept our time there brief.

While photos were (amazingly) allowed at all three venues we went to, the photos from Hawk Gallery are allowed for personal use only. So, I can’t post them online. The staff at Hawk Gallery could not possibly have been nicer. They really made our third stop of the day special. I knew from calling ahead that their Chihuly exhibition was already down but they directed me to their website and I discovered Lino Tagliapietra. So, we made sure to keep venue three on the schedule. Dale Chihuly and Lino Tagliapietra have collaborated in the past. A DVD was playing there and Dale Chihuly was speaking about Lino Tagliapietra. I didn’t catch the exact quote but essentially Dale Chihuly was describing Lino Tagliapietra as the greatest glass artist in the world.

I urge you to check out the Hawk Gallery website, where you can see beautiful photos of Lino Tagliapietra’s amazing glass art.

Behold photos of Lino Tagliapietra’s work at venue number three below:

Lino Tagliapietra

Last but not least, I thought this video was interesting:

Time lapse video of the installation of the Dale Chihuly exhibition at L.A. Louver Gallery from November 19, 2004 – January 15, 2005.

So, what’s the takeaway? I believe that most patients have a good idea of their strengths and limitations. Most patients know when it’s best to be cautious and when it’s best to “go for it”. That doesn’t mean that travel always goes well… even with the best of planning. (For me, it actually rarely does). However, I believe that there are times that it’s worth throwing caution to the wind and testing the limits. Obviously, one person’s limits may vary greatly from another person’s. However, I think it’s important to “go for it” when possible. In this case, it paid off for us in a big way. It had been a long time since I had traveled that much. It felt good.

“Travel and change of place impart new vigor to the mind”.
~~ Seneca

This post was written by Jeanne at Copyright © Jeanne — All rights reserved.

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June 22, 2010   16 Comments

Two Years: Reflecting

On June 1, 2008 I set off on an adventure. I had no idea where it would lead. That was exactly two years ago today. It has been a labor of love to be sure and I am extremely grateful for the opportunities and joy it has brought. It has been a wonderful journey and learning experience. I have met some of the kindest, funniest, sweetest, most compassionate people from around the world the past two years!

On that day, I began writing a blog called Jeanne’s Endo Blog. It was never really a blog about just endometriosis at all.

However, when I started writing a blog I knew endometriosis would be one of the illnesses on which I would focus my writing. After all, my journey with chronic conditions began 28 years ago with endometriosis. I was then just thirteen years old when my symptoms started in 1982. Ten years after that, I had a laparoscopic surgery that finally gave me a name for the illness that had turned my life upside down at age 13: endometriosis. It has been said that the average diagnosis of endometriosis occurs 9.9 years after the onset of symptoms. So, the time lag for my diagnosis was a textbook case. This type of delay is absolutely unacceptable. (There are many previous posts about why such a delay occurs – in the 373 posts that preceded this. I encourage readers to check my blog’s archives and/or search box in the right sidebar to locate such posts).

Regular readers here know that I have by no means confined my writing to endometriosis. At the same time, my passion for the endometriosis cause has made it a focal point amongst the posts about other illnesses and causes.

My husband commented a few days ago that my keyboard (new as of about a year ago) has been used so much that many of the letters no longer have their markings. That’s right. I have worn the letters off my keyboard. It has been a busy two years!

As the years have gone on since I became chronically ill in 1982, quite an array of additional illnesses have been added to my list of diagnoses. This link mentions a few of them. I have so much that I wish to say about each of my chronic conditions that I often have an internal struggle regarding how to spend my time and focus my energy.

So many of these conditions need more awareness! So many are poorly understood and under-researched/under-funded. So many involve patients whose experiences are not validated by our society or even their own loved ones (especially true for the “invisible illnesses”). Many patients are accused of exaggerating or of having “psychosomatic” illnesses. I struggle with how to give fair time to each of these illnesses. Which way should I turn? Which illness is facing the most pressing issues? Which illness is having an awareness day/week/month? How can I best help the causes that are dear to me? What is the most efficient use of my time?

Where should I go next when there is so much to do?

The reality is that I can’t do justice to all of the topics that I wish I could write about as frequently as I would like to write about them. I try to but the risk of burnout or escalating symptoms forces me to prioritize as best I can and try to pace myself. Sometimes I am better at this than others. Sometimes I don’t practice what I preach about the importance of self-care. To attempt to do justice to every issue I’m passionate about with my writing tends to throw the self-care I preach out the window. The reality is that I need to practice what I preach and take care of myself so I don’t get sicker and/or burned out from pushing myself too hard. This is probably the most challenging part of blogging for me. If I wrote 24/7, I could never do justice to each illness the way I’d like to in a perfect world. There are just 24 hours in a day. I have some serious health problems that place limitations on me. I may not like it but it’s the reality. Even if I were healthy, what I wish I could write about is beyond what one person can do. I have been trying my best to make peace with this fact.

In addition to writing about illnesses I have, I also advocate for causes I believe in (such as illnesses that do not affect me firsthand but do impact large numbers of my friends – online and off). Also, I spend an enormous about of time in “off the blog” conversations with fellow patients: giving/receiving support, sharing resources and information, working as a team to research issues we care about, etc.

When I converted my blog from Jeanne’s Endo Blog to Chronic Healing, I wanted a blog name that captured my desire to keep writing about many chronic conditions. I wanted the name to expand beyond endometriosis alone. Finally, I wanted it to be positive and reflect healing.

In the course of a conversation with Cassie Germsheid (who re-designed my blog and migrated my data from Blogger to WordPress) about what to name this blog, I decided on the name Chronic Healing. With Cassie’s outstanding help and a great deal of hard work, I was able to realize my goal of launching Chronic Healing on June 1, 2009… the one year anniversary of when I began blogging initially. There was an enormous amount of data migrated. Cassie helped me make Chronic Healing what it is today.

Now, here we are a year later. I cannot express how much I have learned, how touched I have been by the kindness and compassion of so many people that I have had the privilege to “meet” online, how many intense/strong connections I have made with fellow patients around the world, how much support and information I have received, etc. My only hope is that I have been able to touch the lives of those I have met on this awesome journey even a fraction of how much they have touched me. It has been an honor and a joy to interact with so many people who practice compassion and loving kindness each day.

The LOVE expressed to me by my online friends warms my heart and amazes me every day. It truly is amazing and heartwarming. The acts of compassion I have witnessed these last two years are beyond anything I could have imagined.

It would be impossible for me to thank everyone publicly but please accept this post as my blanket thank you to everyone. If you are reading this, the thank you applies to you!

Moving on, there is exciting news ahead that is related to a venture that my friend Amanda recently embarked on. Like me, Amanda has endometriosis. She has a new site that is up and running now and you can check it out by clicking below. I encourage you to do so!

Amanda’s Patch

So what is the exciting news? Well, I had contemplated last week whether to do something to celebrate this two year anniversary but had not decided upon anything. It was just a fleeting thought and I hadn’t decided whether I would or would not have some sort of blog giveaway. The very next day, my dear friend Amanda contacted me volunteering to donate something very special for a blog giveaway.

She had absolutely no idea of my blog’s anniversary date and was simply offering to donate a handmade item because, frankly, it is in her nature to do thoughtful, caring, supportive things like that.

I was very pleased with the timing of Amanda’s generous offer to donate an item for a blog giveaway. For it to be a handmade, beautiful giveaway item from someone I respect so much and for it to unfold at the perfect time for an anniversary giveaway is just wonderful.

It gets even better… The handmade item she is donating for a blog giveaway for this very post fits perfectly with the healing theme of this blog! You see, Amanda uses healing crystals in her handmade jewelry. What a perfect way to honor healing… the very theme of this blog.

Before I share a description of the item or the photograph of the prize that someone reading this will win, I would like to urge readers to check out Amanda’s new online shop. She recently launched her own business and I am beyond thrilled for her! Click below to check out her site:

Please note that the above link will take you to two places (her online shop and her blog). On the Amanda’s Patch blog, she has a section that talks about endometriosis. As Amanda puts it on her blog’s endometriosis section, here is why she included some information about endometriosis on the blog:

“You see, my endometriosis was a massive part of the decision to start Amanda’s Patch and so it had to be involved somewhere”.

I love the way Amanda increases endometriosis awareness through her new business and lets those visiting her shop’s blog know why the endometriosis cause is important to her! She is integrating her personal experience into her new venture in such a wonderful way that can educate people about endometriosis. (Among Amanda’s past blogs is “Me and You at 22”, which many regular readers here will recognize).

Well, I have reminisced enough. I do believe it’s time to get on to the details about the blog giveaway!

Here is a photograph of the beautiful necklace handmade by Amanda:

Prize description of necklace:

Amanda says, “the necklace is made from amethyst and aventurine beads crocheted onto silver-plated copper wire and has a lily-shaped toggle clasp. Amethyst and aventurine are both part of the quartz family, which means they complement each other beautifully and will go with pretty much any other crystals the winner may wear”. Amanda adds that as far as energy is concerned, “all crystals have energy properties”. She also notes that, “all types of quartz have different properties but the family are, quite simply, great for healing negative energies!”

Amanda notes: “amethyst works with the ‘higher’ chakras, particularly the third eye and crown chakras which will help on a physical level for the head and sinus areas as well as spiritually by helping to clear the thoughts and emotionally by helping to clear the blocked emotions” and that “aventurine works on the heart chakra, helping to ease heartache, particularly caused by factors out of our control. Green is a particularly healing color (colors are so important). It helps ground us, find the best in our environments (think of connections with nature) and is great for emotional pain”.

Finally, here is some random trivia about crystals. Amanda tells me that work is being done on using crystals as massive data storage devices. I did a search online and I found a link about this topic here:

Tiny Crystals Could Hold Key To Massive Computer Memory

Interesting, huh?

As with past blog giveaways, the winner will be chosen randomly based on comment number and you may leave as many comments as you wish. (Obviously, multiple comments increase your odds of winning this beautiful crystal necklace). Amanda has generously offered to ship the prize to the winner regardless of their location. So, this contest has no geographical requirements. If you’re interested in a chance to win this lovely necklace, be sure to leave a comment! I’ll pick a winner in a few days. I haven’t decided when I’ll be picking the winner. So, get your comments in now to enter.

Thank you!

This post was written by Jeanne at Copyright © Jeanne — All rights reserved.

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June 1, 2010   26 Comments

When Rest Is Just Not Optional

Wow! It has been nine days since my last post. It is extremely unusual for me to have so much space between posts. However, my body has made it clear that I have reached the “rest is just not optional” zone. I have learned to heed the warnings from my body when things reach this zone.

Beginning HERE in March, I have been really busy working on various awareness days, weeks, and months. By “really busy”, I mean striving to avoid burnout. Too busy.

Some of the advocacy work I have been doing was posted here and other information was posted on other sites such as Facebook.

Also, I set up a new group in March called Endometriosis and MCS for patients who have both chemical sensitivity and endometriosis on The Canary Report’s NING network. Unfortunately, I have been so busy with all of the awareness activities that I haven’t really spent very much time, as of yet, on that group. However, the good news is that I have identified many women who have both chemical sensitivity and endometriosis and several of them have joined the group. So, I think we’ll get it active once things have calmed down and I have a chance to focus some energy on it. I believe it’s important to look at connections between conditions that have overlapping populations and look forward to talking with the group members who’ve already joined and those who will do so.

In addition to the awareness issues I’ve been working on, I picked up several Facebook friends who have interstitial cystitis (IC) during the course of Endometriosis Awareness Month. As many readers here are already aware, endometriosis and interstitial cystitis are considered to be co-existing (sometimes called “overlapping) conditions. Here is a shout-out to Melissa Bachoo. She is an IC patient I have had the privilege of getting to know via Facebook over the last few months and she is a very thoughtful, caring person. If you have IC and you are a Facebook user, I recommend getting connected with Melissa Bachoo.

I have had a great deal of off-blog communications 1:1 with people. While I am very happy to have gotten to know some new people and have also interacted with people I’ve known awhile, it does take time to try to keep up communications with people. If you are one of many people that sent me a message via Facebook or The Canary Report’s NING Network in March, April or May who I have yet to respond to, please consider this my blanket apology for recently finding it quite impossible to keep up with replies. I am not ignoring you and I’m really sorry for the delay. I have never felt so behind in replying to people’s messages. Please don’t take it personally. I have just been trying to tackle way too much in the last couple of months.

Regarding endometriosis and IC as overlapping conditions, please see related press release here from the Overlapping Conditions Alliance:

The Overlapping Conditions Alliance Launches the ‘Campaign to End Chronic Pain in Women’ on Capitol Hill, to Fight Discrimination Against Women in U.S. Healthcare

I am far too exhausted and drained right now to compile a comprehensive list of awareness posts from the last couple of months (which you can easily find in the archives or by searching via topic words). However, I did select a few recent posts that were either written specifically for awareness days/weeks/months or that were written during that same time period that I thought might be of interest. This is just a sampling. Again, there are more related posts available and I encourage you to check them out by using archives or search (both located in the right sidebar).

Here are some topics covered during the last couple of months in conjunction with awareness days, weeks, and/or months (in no particular order):




multiple chemical sensitivity (MCS)




endometriosis and MCS

Last but not least, I wanted to give a shout-out to a blogger I met relatively recently. Her name is Jenn and her relatively new blog has already covered an array of endometriosis-related topics. If you haven’t yet checked out her blog Endo Friendo, I encourage you to do so.

In the short time Jenn has been writing a blog, she has talked about alternative nausea treatment, preparing for surgery with methods like guided imagery and Jin Shin Jyutsu, infertility awareness week, our endometriosis awareness petition, and much more. Jenn is passionate about the endo cause and has a great sense of humor. She is a shining example of how not to let endometriosis get you down. Please drop by her blog and say hello. Her open-minded, caring manner makes her a pleasure to know. I feel like I’ve known her longer than I have thanks to our off-blog communication.

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May 21, 2010   9 Comments

The Opportunities Presented By Adversity (VIDEO)

Powerful. Inspirational. Moving. Enlightening. Wow.


Aimee Mullins

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April 1, 2010   16 Comments

House Sends Health Care Bill To President Obama

Visit for breaking news, world news, and news about the economy

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March 22, 2010   2 Comments

Sick On Top Of Sick

Being chronically ill has often been compared to riding a roller coaster ride. Things are never boring.

Being sick on top of sick is a situation many people can relate to. I decided it would be an appropriate topic to write about today, in light of how I have been feeling for about a week now.

Some days are up.

Some days are down.

Some days are downright dizzying!

Anyone who is chronically ill knows that when you get sick with some sort of bacterial or viral infection on top of the chronic illness(es) you already have, it makes a challenging situation even more so.

I have been in a flare-up of fibromyalgia for the last couple of weeks. The change in weather did its thing, as it always does, and my muscles were not happy. Then, I got some sort of bug that includes muscle pain along with a very sore throat and a wicked headache. The fatigue was so severe that I slept the better part of the day on Monday and Tuesday. Yesterday, I started feeling human again.

Anyone who knows me at all knows that getting sidelined during Endometriosis Awareness Month was very frustrating. However, my body made it very clear that writing blog posts was not an option. Those of you who are connected with me on Facebook saw me pop up occasionally there. Posting comments here and there on Facebook is about all I’ve had energy to do the last few days.

In closing, while I have not been able to accomplish everything I had hoped to accomplish by Day 18 of Endometriosis Awareness Month, that is (frankly) no big surprise. The ideas I have are always more numerous than what I can implement but that’s alright. Endometriosis awareness should occur year-round. While I recognize that March does provide some addition visibility and exposure for the topic of endometriosis, and while I try my best to take advantage of that, I fully realize that the work must occur all year long.


You have signed the endometriosis petition, right? You are aware that ANYONE who supports endometriosis awareness can sign it, right? Several bloggers have posted the petition badge on their blogs. Several other people have posted the link to the petition on their Facebook walls and this has resulted in signatures from their friends and family getting added to the list.

PLEASE… share this petition as widely as possible. We’ve already used it as a tool to force the media to correct inaccuracies about endometriosis in a syndicated newspaper column:

Endometriosis Advocacy and the Media (Re-post)

Think what else we can do with it! Click above to access the petition (and its link). Also, anyone willing to select “StumbleIt” and/or “TweetThis” at the bottom of this post and others like it will help spread the word about endometriosis awareness. If you are registered on StumbleUpon, please consider writing a review of this post or of the petition itself. I added the petition to StumbleUpon and it has gotten a fair number of views. Here is the link to the StumbleUpon version of the same petition you can access with the blue badge above:

Create Endometriosis Awareness & Understanding

Thank you.

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March 18, 2010   10 Comments

Endometriosis Awareness Month

Petition with GoPetition | Online Petitions

After evaluating several different ideas for kicking off Endometriosis Awareness Month, I decided to go with a simple post to start.

Therefore, I would like to refer readers to a recent post regarding endometriosis advocacy and the media because a number of endometriosis patients banded together, contacted a newspaper that had printed inaccurate information about endometriosis, and it really made a difference.

As explained in more detail in the following post, the newspaper in question printed a letter to the editor which corrected statements made in the original newspaper article (an original article that was, ironically, written by a gynecologist). I truly believe that one factor that may have helped the newspaper decide to print the correction was that the endometriosis awareness petition with nearly 500 signatures on it was sent to the editor of the newspaper. I believe, after many occasions in the past where such letter-writing campaigns were simply ignored by the media, that the petition you see linked from this very post may well have helped make it harder for the paper to dismiss our letters.

If you missed the post (or the two related posts that preceded it, which are linked from this one), here it is:

Endometriosis Advocacy and the Media

If you have already signed the petition to help spread endometriosis awareness and disseminate endometriosis facts in the media, thank you! Perhaps you have family or friends who would be willing to sign it as well?

If you have not yet signed the petition, please take a moment to do so. There is an optional field where you can leave a comment along with with your signature, if you so choose. There are many fields that are strictly optional. For example, if you do not wish to list your city, you may select the N/G or “not given” option for that field. Simply click on any of the royal blue petition logos in this post to sign. Signing the petition is a very quick, easy process.

You don’t even need a pen to sign this petition. If you’re reading this post, you’re just a click away from signing the online petition.

Anyone wishing to support the estimated 89 million women and girls worldwide who have endometriosis may sign this petition. Men and women, young and old… let’s work together to get as many signatures as possible on it.

The petition text reads as follows:

An estimated 89 MILLION women and girls worldwide have endometriosis! “This makes endometriosis more common than AIDS and more common than cancer“, as per Ohio State University Medical Center. (Source: The Ohio State University Medical Center website).

Yet for years it has remained largely “under-the-radar”. The general public has been largely unaware of it – or misunderstands just how very debilitating it can be. When endometriosis IS mentioned in the media, misleading statements may be made (causing confusion for patients and the public).

We have a duty to educate the public about this life-altering illness by spreading factual information… and by recognizing misinformation and taking steps to address that.

Endometriosis can only be diagnosed via a surgical procedure called a laparoscopy.

Endometriosis awareness is vital! It is equally vital that information disseminated about endometriosis be accurate! In spreading myths and misinformation, endometriosis patients are hurt rather than helped.

The purpose of this petition is endometriosis awareness. ANYONE who wishes to sign it may do so. Whether you are male or female, young or old… if you wish to show support for the 89 million women and girls living with endometriosis, we’d be honored if you’d sign this online petition. If you wish to do so, you may include a comment when you sign. Please spread the word about this petition to others!

* Please note that I do not endorse any organizations. Patients are encouraged to do thorough research before supporting any organization claiming to help women and girls who have endometriosis.

Thank you!


Please click above to access the petition.

Won’t you please join those of us who have already signed this petition or ask others to do the same? The more signatures we are able to gather, the better tool the petition becomes when we write in to various media outlets to make them aware of stories that contain inaccuracies. This petition is a tool for spreading endometriosis facts and pointing out endometriosis misinformation.

Since endometriosis has a long history of being portrayed in the media with extreme and persistent inaccuracy, it is vital for patients to speak up when they see such errors. Having a petition like this is very helpful because of the nearly 500 people who have signed it, many have left heart-wrenching comments that any newspaper editor or reporter would have to be touched by in some way.

Let’s keep using this petition the way we did recently with the newspaper mentioned in the link above. By speaking up together, we can make a difference in how endometriosis is portrayed in the media. This is vital for a condition so poorly understood and so riddled with myths and misinformation.

Thank you!

Petition with GoPetition | Online Petitions

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March 1, 2010   8 Comments

Health Reform And Gender Discrimination

Yesterday, I watched the bipartisan meeting on health reform. The summit was fascinating to me for many reasons but there was a highlight, for me, in the form of remarks made by Rep. Louise Slaughter. She really stood up for women’s health!

Rep. Louise Slaughter

She boldly spoke up for women at the 2/25/2010 health summit

In my mind, her comments can be appreciated by all women and especially any any female patient who has lived with the effects of gender discrimination in relation to medical research (i.e. lack of research on women or lack of investigating illnesses that affect just women) or cost of healthcare that is tied to gender. I won’t even get into a discussion of how common it is for women’s symptoms to be dismissed when similar symptoms would be taken more seriously for males (i.e. heart disease). The point is that Rep. Louise Slaughter stood up for all women and I was just beyond thrilled that she took the opportunity presented by the summit to address these issues.

My thanks to Diana of the Somebody Heal Me blog for posting this video. When I clicked on the link she posted (to the video below), it took me to the Odd Time Signatures site.

Yesterday, I was so thrilled to hear what Rep. Louise Slaughter said that I resolved myself to scour the Internet today to find a video clip of her at yesterday’s summit. Again, Rep. Slaughter wasn’t just speaking up about health reform.

She was speaking up for female patients everywhere and she was shining light on the fact that medical research studies were done almost exclusively on white males up until a startlingly short time ago, relatively speaking. I believe that any patient with an illness that affects women can appreciate the way Rep. Louise Slaughter spoke up for ALL female patients.

As a patient with numerous illnesses that either affect women alone or that affect more women than men, I was absolutely ecstatic to hear Rep. Louise Slaughter articulate what too few people are aware of… and to hear her do so in such a public forum!

There IS gender discrimination not only in the area of medical research but in the very cost of health insurance itself for women vs. men. Before I had even had a chance to locate a video of Rep. Louise Slaughter at yesterday’s summit, I came across a link from Diana that led me to Odd Time Signatures site.

(Video run time 12 minutes and 59 seconds):

Did you miss the summit? I will warn you up front. It’s long. However, you can scroll through the link below and watch parts of it if you choose to. (This video was just a snippet from the summit).

The link below has the summit, in its entirety, broken down into five video parts. You can watch some or all of it at the link below:

Bipartisan Health Care Meeting

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February 26, 2010   2 Comments