Helping women with chronic illnesses

Extra extra! Here is some exciting news!

Amanda Fisher of Amanda’s Patch

Regular readers here most likely recognize Amanda from seeing her here before. For newer readers, Amanda is an endometriosis patient who is passionate about endometriosis awareness. Yesterday marked the publication of the first piece in her series on
iVillage UK:

Endometriosis – the ‘invisible’ illness

Congratulations to Amanda for becoming a published columnist on iVillage UK!

Amanda is doing great things to generate endometriosis awareness. Please show Amanda your support by commenting on her iVillage UK article and by clicking “like” on that site for Facebook for this first article in a series.

Also, please check out her own site:

This is a wonderful opportunity for endometriosis patients to rally around Amanda and support her as she sets out to write a series about endometriosis and trying to conceive. Please pay her a visit… on iVillage UK and on her blog.

It’s very exciting to have Amanda speaking out about endometriosis in such a prominent forum. If endometriosis patients visit iVillage UK in droves, the site will recognize what a smart move they’ve made in electing to publish Amanda’s series.

Last but not least, if you haven’t yet signed the endometriosis awareness petition… please consider taking just a moment to do so by clicking below:

If you are interesting in posting the petition badge above on your site, please leave a comment on this post and I’ll get the code out to you. Thank you for supporting the 89 million endometriosis patients worldwide who deserve prompt diagnosis and top-notch treatment for this chronic illness!

This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.

“Peace is not something you wish for; it’s something you make, something you do, something you are, and something you give away.” ~~ Robert Fulghum

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Thank you to everyone for continuing to support this blog by shopping Amazon via my ads & spreading the word to others! So many of you have supported my blog in this way; I greatly appreciate your support!!

Thank you for your blog comments!

New to blog commenting? Just click “comments” below the post. If you grab a Gravatar, your picture will show with your comment.

>> Stumbling & tweeting my blog posts is greatly appreciated! <<

RT @jeanneendo: "Endometriosis Series"

If anyone is are wondering why I have not been writing more frequent posts lately, I am trying very hard to get caught up. I am officially in overload mode. It has been difficult for me to write as often as I would like lately, as I have mentioned previously. It’s certainly not for lack of ideas. (It has been very frustrating to not be able to post as frequently as I normally do). I just haven’t had the time or energy to post before now. Between health issues, a very stressful time in my personal life, time spent keeping in touch with fellow chronic illness patients on Facebook, and a great deal of time connecting 1:1 “off the blog” with fellow patients recently, I haven’t been posting as often as I would like.

Sunday, I had a severe allergic reaction to something. The antihistamine I took for bad hives and intense itching took care of the allergic reaction swiftly but has thrown me for a loop with terrible dizziness and other symptoms since. I just wanted to let people know that I am trying to get caught up and into a more frequent schedule for posts as soon as possible. Thank you very much for your patience and support.

This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.

“Peace is not something you wish for; it’s something you make, something you do, something you are, and something you give away.” ~~ Robert Fulghum

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Thank you to everyone for continuing to support this blog by shopping Amazon via my ads & spreading the word to others! So many of you have supported my blog in this way; I greatly appreciate your support!!

Thank you for your blog comments!

New to blog commenting? Just click “comments” below the post. If you grab a Gravatar, your picture will show with your comment.

>> Stumbling & tweeting my blog posts is greatly appreciated! <<

RT @jeanneendo: "Overload Mode"

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:

1-800-273-TALK
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 http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.

“Peace is not something you wish for; it’s something you make, something you do, something you are, and something you give away.” ~~ Robert Fulghum

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Thank you to everyone for continuing to support this blog by shopping Amazon via my ads & spreading the word to others! So many of you have supported my blog in this way; I greatly appreciate your support!!

Thank you for your blog comments!

New to blog commenting? Just click “comments” below the post. If you grab a Gravatar, your picture will show with your comment.

>> Stumbling & tweeting my blog posts is greatly appreciated! <<

RT @jeanneendo: "Depression Breakthrough?"

Please check out this endometriosis video I made today:

If you have not read the post listed below previously, it was mentioned in the video above:

Endometriosis Apathy?

Just click below for information regarding endometriosis research currently being performed by Endochick:

Endochick

Endometriosis Patients Needed

Artwork by Nicole from Switzerland, featured on the Amanda’s Patch site.

Also mentioned in this video was Amanda’s site, which is generating awareness about endometriosis in a variety of ways:

Amanda’s Patch

Don’t miss her new YouTube Channel here:

Amanda’s YouTube Channel

Last but not least, please subscribe to my YouTube Channel.

Click here if you are interested in signing our endometriosis awareness petition:

Thank you!

This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.

“Peace is not something you wish for; it’s something you make, something you do, something you are, and something you give away.” ~~ Robert Fulghum

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Thank you to everyone for continuing to support this blog by shopping Amazon via my ads & spreading the word to others! So many of you have supported my blog in this way; I greatly appreciate your support!!

Thank you for your blog comments!

New to blog commenting? Just click “comments” below the post. If you grab a Gravatar, your picture will show with your comment.

>> Stumbling & tweeting my blog posts is greatly appreciated! <<

RT @jeanneendo: "Endometriosis Advocacy (VIDEO)"

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):

Petitions by Change.org|Start a Petition »

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:

“endochick 80@gmail.com”

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 80@gmail.com” (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 http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.

“Peace is not something you wish for; it’s something you make, something you do, something you are, and something you give away.” ~~ Robert Fulghum

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Thank you to everyone for continuing to support this blog by shopping Amazon via my ads & spreading the word to others! So many of you have supported my blog in this way; I greatly appreciate your support!!

Thank you for your blog comments!

New to blog commenting? Just click “comments” below the post. If you grab a Gravatar, your picture will show with your comment.

>> Stumbling & tweeting my blog posts is greatly appreciated! <<

RT @jeanneendo: "Endometriosis Apathy?"

My husband’s contract job ends on July 30th as there is no more headcount available to allow for extending his contract.

For those of you unfamiliar with contract work, if the company he has been working at for the past two years does not have enough headcount allocated (which it doesn’t) to allow for his contract to be extended past Friday (the contract’s end date), then the contract expires.

Many people have stepped in and tried to save his job. There is nothing anyone can do. (The contract had already been extended once… but that is not an option now since there is no headcount available). It’s all a bit surreal right now. It’s hard to believe that it will be this Friday that his contract ends.

Since he is a contractor (self-employed), he won’t be eligible for unemployment benefits; so we are bracing for ZERO income.

As you might imagine, this situation has resulted in stress and anxiety. We’ve been down this road before and remember it like it was yesterday. The number one reason by far that we nearly lost our house, three times now, was medical costs. Out of the last 10 years, we have been paying 100% of the premiums for health insurance for 5.5 of those years (either because we were on COBRA or because my husband is self-employed, as he is now).

We actually had to file bankruptcy several years back. Without the outrageous medical costs that we have incurred, things would have been a lot different. At the same time, we’ve been through the layoff process before and it was certainly a contributing factor that led to the fight to save our house. We itemize our taxes and the year my husband was first laid off, our out of pocket medical expenses (with health insurance) were over $14,000.00 for that year. Our 2009 out of pocket medical expenses exceeded that. So, to say that we are concerned right now would be an understatement. Especially considering that my husband has been job searching for several months now because he saw the writing on the wall at work. I mentioned in the title that I am requesting support…

Oops. No, I was looking for a different type of support… As some of you may have noticed, I have some ads displayed on both sidebars of this blog. These are not substantial money makers by any means. However, every little bit helps. While I have seldom mentioned my ads in the past, I have learned from past experience that calling the ads to people’s attention is worth doing. People’s eyes tend to glaze over and glide right by the ads normally. However, if I bring to people’s attention that these ads do result in referral fees… I have found that the ads suddenly get more traffic. (For those of you who recall when I switched my blog over from Blogger to WordPress and renamed it Chronic Healing, the referral fees I have gotten from ads since then, while helpful, have not made much of a dent in covering the cost of making that migration. So, my ads haven’t netted me any profit).

I am asking my readers this:

If you are making an Amazon purchase, would you please be so kind as to access Amazon via one of my blog ads? Any ad on my blog will do. It doesn’t matter what graphic is on a given ad; any Amazon ad on my blog will work as well as another. If you purchase something from Amazon via my blog, it will not cost anything different than if you had bought it directly on Amazon.

Also, in my blog’s sidebar, there is an ad for the company from which I purchased the ChronicHealing.com domain. If anyone reading this is thinking of purchasing a domain name, I would appreciate if you’d consider doing so by clicking on my ad for Namecheap. I have not had any difficulties with this company at all. (I have heard stories of people going through grief with other companies). Several friends of mine have purchased domain names since I began carrying that ad on my blog but have purchased their domain names elsewhere. I have never blogged about the Namecheap ad referral; I simply posted the ad in the hope that some people might see/use it. Perhaps it would be more effective, though, for me to point it out. So, if you’re looking to purchase a domain name, please consider doing so through the Namecheap ad on my blog.

I would like to thank my Facebook friends who have shared a link I posted there that was a mini version of this post! I’m afraid there are too many people who shared my Facebook link to list them all but I do appreciate you helping me get the word about about my husband’s job situation and about my blog’s ads.

If anyone reading this is able to make any Amazon or Namecheap purchases using my blog ads, I would greatly appreciate it… and I thank you in advance.

If you are not in a position to make such purchases but would be willing to share a link to this post on Facebook and/or Twitter, I would greatly appreciate it! If you click on “Tweet Me” at the end of this post, it takes just a moment to send a tweet about this (or any) post. For Facebook, posting the URL for this post as a “link” on your wall (or simply doing a “share” on the link I’ll be posting on Facebook) would be incredibly helpful! The more people know about my blog’s ads, the greater the odds of people using them and me getting a referral fee.

In sharing the link to this post, each of my Facebook and Twitter friends who share it are making their friends who see it aware of my blog ads. If even a small percentage of the people who see it on social media were to make Amazon and/or Namecheap purchases via my blog, it would be really helpful. Considering many of my friends who are on Facebook and/or Twitter are connected with hundreds of other friends, simply sharing the link on social media could really help!

Again, there is no additional cost to shop Amazon via my blog’s ads as opposed to shopping directly on Amazon’s site. Also, Namecheap’s prices are very competitive. I would GREATLY appreciate your support in spreading the word with anyone you think might ever shop Amazon or Namecheap.

Last but not least… About a year and a half ago, a woman whose opinion I value suggested that I install a donation button on my blog. She knew that I had had some bad experiences with AdSense (Google) ads and that I had dropped them after tiring of manually blocking ads about false cures for illnesses including endometriosis and fibromyalgia. (This was before I had installed the Amazon ads). She said, “I know you work hard on your blog. I value your work and I know that I would make a donation. I’m sure others would too”. At that time, I was not comfortable doing so. I had only been blogging for about 6 months then. While I know how hard I work on it and while I do believe my time is worth something, I was not comfortable with installing a donation button at that point.

It took almost two years for me to reach the point where I decided I was at peace with installing a PayPal donation button. I never wrote a single blog post about it. I simply installed it in the sidebar of my blog and figured I’d see what would happen. I had read what blogging experts like Darren Rowse of PROBLOGGER had said about the use of items like “tip jars” in blog sidebars resulting in readers leaving $1.00 or $2.00 “tips” to support sites they value and support. I just wasn’t comfortable using the word tip. Of course, I wasn’t comfortable with the word “donate” either but that is what PayPal calls it. (There is a reason it took me almost two years to install a PayPal button).

“People are willing to reward bloggers when they see value in your writing”.
~~ Darren Rowse, p. 122, The PROBLOGGER book

In any event, my lack of communication to readers about my installing this button a few months back (due to my discomfort with the topic) probably didn’t do very much towards encouraging anyone to use it. I decided today that it is about time for me to take a moment to explain why I have a PayPal button. As I said, I am not entirely at ease with the word “donate” on the button. I am not looking for charity. I have lost a fair amount of money in the 2 years I have been blogging. (I should emphasize that it was my decision to migrate my blog and I’m not complaining).

My intent here is to explain to readers that I installed the PayPal button in the hope that:

1) It might provide a means to recoup some of the expenses associated with this self-hosted blog (mostly costs associated with migrating and re-designing it).

2) It would provide a means for readers to make a nominal (i.e. $1.00 or $2.00) “donation” to support this blog… a blog on which I spend a considerable amount of time researching/writing. (In other words, I’m hoping that readers who value my writing might consider using the PayPal button as a means of conveying their support).

The purpose of this blog is to help people. Nevertheless, a professionally re-designed, self-hosted blog, such as this, does cost money and even a nominal donation does help offset expenses. (It will be awhile for me to recoup the costs of the re-design and migration of this blog but every little bit helps).

Again, I want to be clear that I am not asking for charity. My intention is simply to draw attention to my ads and PayPal button. My hope is that those in a position to make purchases using my ads/affiliate programs — and/or to make a nominal donation using my PayPal button — will now better understand why I have things set up as they are… and will understand that I really greatly appreciate the support. Thank you!

This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.

“Peace is not something you wish for; it’s something you make, something you do, something you are, and something you give away.” ~~ Robert Fulghum

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Thank you to everyone for continuing to support this blog by shopping Amazon via my ads & spreading the word to others! So many of you have supported my blog in this way; I greatly appreciate your support!!

Thank you for your blog comments!

New to blog commenting? Just click “comments” below the post. If you grab a Gravatar, your picture will show with your comment.

>> Stumbling & tweeting my blog posts is greatly appreciated! <<

RT @jeanneendo: "Stress And Request For Support"

Lately, I’ve been on the “treadmill”. No, not the literal kind pictured above. (Anyone who was a fly on the wall when I flunked my echocardiogram/stress test would know that I haven’t literally been on a treadmill). No, I mean the figurative treadmill.

No matter how fast I “run”, I can’t “keep up”. First, let me provide some definitions. By “run” in this context, I mean being productive, getting things done, and (gasp) getting “caught up” on my “normal tasks”. (One could debate extensively what “caught up” means. Let’s just say that I have been further behind than usual on just about everything and that stresses me out.

One delay has led to another and the domino effect has left me getting further behind each day lately.

I am purposely confining this summary of how behind I am to my work online. I am lagging in response time (to a ridiculous extent) on emails, Facebook (direct) messages, replying to Facebook comments on my wall, Canary Report messages, getting connected (long overdue) with local endometriosis support group members, posting on my blog anywhere near as frequently as I am accustomed to, leaving blog comments on other sites, etc.

What some of you may not be aware of is that I spend a fair amount of time having 1:1 conversations with various online friends (some are bloggers, some are Canary Report friends, and some are Facebook friends).

(The keyboard pictured above looks just like mine with the exception that the letters are worn off of most of my keys from typing so much)!

So, when I’m not publishing new posts or when my time on Facebook is more limited, it sometimes means that I’m giving and/or receiving support “off the blog”. Lately, I have spent a fair number of hours on this type of support. I thoroughly enjoy the opportunity to connect 1:1 with fellow patients. I am most certainly not complaining! I am just giving some insight into the behind-the-scenes support, networking, and relationship-building that a blog reader here wouldn’t necessarily know about if I didn’t mention it.

I won’t even touch on how far behind I am on tasks in my personal life. That could take a series of posts. Sigh.

Far from having a writer’s block, I have far more ideas about which to write than I have time to write them. I must confess that I sometimes find this timing imbalance frustrating (OK… maddening). The longer I feel I’m running in place on the “treadmill”, the more anxious I get. What I’m telling you is that I’m currently quite anxious.

Several friends have suggested that I relax. My current dilemma is that I have reached the point where I am incapable of relaxing in any kind of meaningful way until I get caught up… even a little compared to where I’m at now.

Normally, I make every effort to reciprocate as quickly as possible when people leave a blog comment here. Lately, I haven’t been very effective at that. It has been all I can do to moderate comments in a timely fashion lately. (Please note: the more blog comments, the better! Bring them on! Please just be aware that I may not get them posted as quickly as usual).

In closing, I apologize to anyone I owe messages to and I am working as rapidly as possible at responding to the backlog of messages. Please consider this post my “blanket apology”. I’m working on catching up as soon as I possibly can. So, I thank you for your patience!

This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.

“Peace is not something you wish for; it’s something you make, something you do, something you are, and something you give away.” ~~ Robert Fulghum

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Thank you to everyone for continuing to support this blog by shopping Amazon via my ads & spreading the word to others! So many of you have supported my blog in this way; I greatly appreciate your support!!

Thank you for your blog comments!

New to blog commenting? Just click “comments” below the post. If you grab a Gravatar, your picture will show with your comment.

>> Stumbling & tweeting my blog posts is greatly appreciated! <<

RT @jeanneendo: "Treadmill Time"

Photo: Katy Winn/Getty (Source: Huffington Post)

Today I read this:

This weekend, let’s all send a message to Oprah about Multiple Chemical Sensitivity

I then decided to write in to Oprah regarding multiple chemical sensitivity (MCS) as per Monique van den Broek’s request on Susie Collins’ The Canary Report.

Bearing in mind that there is a 2000 character limit when writing to Oprah (and anyone who reads this blog knows how challenging it was for me to keep it to 2000 characters), here is the letter I sent today to Oprah regarding multiple chemical sensitivity (MCS) :

Dear Oprah,

My name is Jeanne. I have multiple chemical sensitivity (MCS). I’m in the U.S. & was diagnosed in ‘92. I have many other chronic illnesses including 1 that has resulted in 7 surgeries. However, at this point in my life, the illness that has the biggest impact on me daily is MCS. I can’t pump my own gas. Mall trips are a thing of the past. Toxic fragrances emanating from stores with candles & bath/body products make me get dizzy, nauseous, feel faint, have trouble breathing, etc. & make it too dangerous for me to be in a mall. My husband does the grocery shopping because the detergent aisle alone makes so sick. “Air fresheners” have become ubiquitous in public places like rest rooms. (Due to my other chronic illnesses, I have a need for rest rooms more than most people; these “air fresheners” are a serious problem)!! These products contain toxic fragrances unregulated by the gov’t & known to contain carcinogens, neurotoxins, and/or endocrine disruptors. Fabric softeners contain many toxins & there are times I have to step away from a person whose clothes are so coated in fabric softeners and/or detergent that I become ill simply from standing next to them! Some MCS patients have a definitive light bulb moment where they know their MCS started. Others, like me, had a more gradual onset. I’ve been chronically ill since I was 13 years old; I’m now 41. I think my body was vulnerable to developing MCS due to the nature of pre-existing chronic illness plus exposure to medications & environmental factors that acted as triggers. I have severe reactions to exhaust fumes, commercial cleaning products, “air fresheners”, perfumes, cigarette smoke, etc. With the devastating oil disaster in the Gulf, there will sadly be more & more patients getting MCS. Already there have been cleanup workers who’ve sought medical care for MCS symptoms. Many MCS patients are housebound or homeless. This serious illness needs attention!

Thank you,
Jeanne

Readers here most likely know that what I meant when I said “Due to my other chronic illnesses, I have a need for rest rooms more than most people; these ‘air fresheners’ are a serious problem)!!” was that illnesses such as interstitial cystitis, endometriosis, and irritable bowel syndrome require me to use rest rooms more frequently than most people.

So, aside from becoming housebound by my MCS (a possibility which I try not to think about even though I know it could happen to me), that means that I get exposed to even more of those toxic “air fresheners” than an average person would. The last thing I need is to be inhaling “air fresheners” . However, if I am out and about… rest rooms are not optional. So, I continue to be exposed to these on a regular basis and it makes me furious.

Do you have MCS? Perhaps you don’t have an MCS diagnosis but you clearly have some issues with chemical sensitivity? Will you write to Oprah to draw attention to MCS?

This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.

“Peace is not something you wish for; it’s something you make, something you do, something you are, and something you give away.” ~~ Robert Fulghum

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Thank you to everyone for continuing to support this blog by shopping Amazon via my ads & spreading the word to others! So many of you have supported my blog in this way; I greatly appreciate your support!!

Thank you for your blog comments!

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RT @jeanneendo: "MCS Letter To Oprah"

Fasten your seat belts. This is going to be a long post. I’ll try to consolidate as best I can. This is not going to be a “warm and fuzzy” post. I should warn you about that up front. However, I believe it’s very important. So, please bear with me and I will try to end the post on a brighter note than it starts. There won’t be any magical solutions to all of the grave problems covered in this post. However, I will leave you with some great resources for taking positive action. I believe having the ability to take action beats feeling helpless any day. So, please bear with me.

Why am I writing about plastic and oil? What do plastic and oil have to do with chronic healing? Stay tuned and I’ll try to connect the dots between what is happening with the oil disaster in the Gulf and plastic consumption. I’ll also try to connect what all this has to do with health. As far as why I’m writing about Dawn… we’ll get to it.

Let me begin by directing you to the amazing post Susie Collins wrote:

A timeline of health horrors caused by the BP oil well blow out

If you’re anything like me, reading Susie’s excellent, comprehensive post brings up emotions of sadness, frustration, and anger. As a multiple chemical sensitivity (MCS) patient, watching people in the Gulf on TV without respirators or protective gear makes me cringe. Clean up workers are already visiting their doctors with symptoms of multiple chemical sensitivity.

Now, I would like to share a video with you. I should forewarn you that it will not be uplifting. It’s downright eerie. However, I think it is important in that it shows how sometimes history repeats itself:

If you made it through Susie’s timeline and Rachel Maddow’s video clip, you may be feeling pretty upset. I know that was the effect on me.

Please bear with me. I would like to share another video but I want to post a strong TRIGGER WARNING for my infertile friends for this one. I would like to emphasize that this particular video is cringe-worthy for several reasons. The man who filmed it handles the oil with his bare hands. It gets worse in the video. I am posting this so that people can see how badly this particular Florida beach has been affected and, even more so, so that you can see how nonchalant people are about walking through and swimming in the oil. Clearly this beach shouldn’t be open but do these people really need someone to TELL them not to use it?

TRIGGER WARNING:

I want to try not to get too tangential but I would like to mention the fact that I got pretty fired up on some Facebook threads on my wall yesterday. If you would like to see the conversations on those threads, I’m afraid you’ll have to send me a Facebook friend request because it’s too long to get into all of the details here. Let’s just say that I got fired up about PR for Dawn dish soap. Dawn (manufactured by Procter & Gamble) is running ads like the one below. (Please note that I do not normally make a habit of including ads in blog posts but in this case I think seeing the ad is important to understanding what I got fired up about). I know this post is getting pretty long but please stay with me (after the ad below) to learn what my issues are with it.

In general, I believe this is a public relations campaign to boost Dawn’s image and to increase sales by exploiting the situation in the Gulf. Interestingly, I discovered a site called Corporate Watch yesterday that identified Richard J. Ferris as being both on the Board of Directors of British Petroleum (BP) and a “non-executive director” of Procter & Gamble (P&G) — the company which makes Dawn.

Oh. By the way, did I mention that Dawn is made from petroleum products?

Oh, the irony: Dawn saves wildlife with oil-based dish soap

Also, from the Washington Post:

Dawn dishwashing detergent saves wildlife

Anyway, back to Dawn’s PR campaign. If you read the fine print, you’ll see that in order for Dawn to donate $1.00 to one of the wildlife organizations they are donating to, the customer who purchases Dawn must access this (website) to input a code from the Dawn bottle. One would think if the company’s real motivation was to help these wildlife organizations, they could just make a straight donation to them up front. One wouldn’t think it would need to be tied to how many bottles of Dawn were purchased. One certainly wouldn’t expect to need to go online to enter a code from the Dawn bottle to a website to trigger the donation to a wildlife organization.

However, the latter method is how it works… or is supposed to. When I tried going to the site to look into this “donation activation” process, a pop-up marketing screen appears!

Why a marketing survey needs to appear when someone is taking the time to go online to the Dawn site to try to activate the $1.00 donation to wildlife organizations is beyond me. Well, actually it’s not beyond me. It is reinforcing my belief that Dawn (Procter & Gamble) is more interested in their own profits than in helping animals).

Please note: I have heard from a couple of Facebook friends about their knowledge or experience regarding the use of Dawn for cleaning wildlife. I am well aware that Dawn has been used this way for years. (I should note that I do not believe that proves that it’s safe). I will state here, at I have stated on Facebook, that I am not an expert on what is or isn’t safe for cleaning wildlife that have been exposed to oil. The main thing I wrote about on Facebook yesterday regarding Dawn was related to the PR campaign and links between BP and P&G. I have never personally used any products to clean wildlife victimized by an oil spill and don’t know what the safest, most effective method is for cleaning wildlife. That wasn’t really the main point I was trying to get across on the various Facebook threads about this. I appreciate all of the feedback people have provided on Facebook.

For possible alternatives to Dawn for cleaning wildlife, please see the comments section of Oh, the irony: Dawn saves wildlife with oil-based dish soap. Again, I am not an expert on the best methods for cleaning wildlife exposed to oil. I do know that I have issues with Dawn’s marketing approach which I believe exploits this disaster in the Gulf.

After checking out the Dawn site survey (which I won’t bore you with), I proceeded to the screen that talks about activating the donation. After all, I hadn’t reached the field for entering the code for the Dawn bottle yet. So, the site had no way of knowing I am not really a Dawn customer. I clicked the “activate your donation” button and it gave me a message advising me to reload/refresh my page. I did this several times. Each time, I got the same error message. So, I never did make it to the screen that is supposed to activate the donation. I just kept popping back to the screen below after attempting to reload the screen:

Yesterday, I came across this:

National Survey Reveals More than 70% of Americans Don’t Know Plastic is Made from Oil

As stated in the link above:

“Plastics are everywhere and most Americans have come to rely on plastics in all aspects of their lives. However, very few people realize that plastics are made from oil, further contributing to the problems of energy dependence, greenhouse gas emissions and depleting resources. In fact, nearly 10 percent of U.S. oil consumption – approximately 2 million barrels a day – is used to make plastic”.

So, plastic is made from oil. The more plastics we use, the more oil is used to produce the plastics. The more oil is used to produce the plastics, the more dependent we are on oil.

We’ve seen where oil dependency gets us.

What can we do about reducing our dependence on oil? Let’s look at our use of plastics. I’d like you to meet, if you haven’t already, two bloggers who are fierce advocates regarding plastics. Beth and Taina are wonderful resources for how to go about making positive changes.

The video below was made by Beth, author of Fake Plastic Fish.

Beth’s blog, Fake Plastic Fish, contains an immense amount of information regarding how you can reduce the amount of plastic you use. Beth’s passion for the cause is obvious when she speaks about her convictions in the above video.

Recently, Beth directed me to the Plastic Manners blog. Its author, Taina, had written a post that ties together plastic and endometriosis. (By the way, like me, Taina and Beth both have endometriosis).

Taina’s post Momma Earth, Are We Well? mentioned the fact that her endometriosis symptoms have decreased since she has stopped using plastics!

Finally, I thought I’d leave you with this video. It features biologist Dr. Wallace J. Nichols and Taina of Plastic Manners.

Needless to say, I could write on and on about the health problems for humans associated with plastics (not to mention what plastics do to marine life) but this post is already pretty lengthy. I’ll have to save some of that for another post. (I’ve written a bit about plastics, BPA, and phthalates in the past).

So, what is the takeaway out of all of this? For me, it is that each one of us has the power to make choices. Like Taina said in the last video, even if you refuse one plastic item a day, it helps.

Sadly, there isn’t a single one of us who can wave a wand and undo the damage of the oil disaster in the Gulf. However, every single one of us has some control over how much plastic we use.

Plastic is connected to health problems and it’s made from oil.

It’s all connected. We can each do our part.

This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.

“Peace is not something you wish for; it’s something you make, something you do, something you are, and something you give away.” ~~ Robert Fulghum

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Thank you to everyone for continuing to support this blog by shopping Amazon via my ads & spreading the word to others! So many of you have supported my blog in this way; I greatly appreciate your support!!

Thank you for your blog comments!

New to blog commenting? Just click “comments” below the post. If you grab a Gravatar, your picture will show with your comment.

>> Stumbling & tweeting my blog posts is greatly appreciated! <<

RT @jeanneendo: "Plastic And Oil… And My Take On Dawn Dish Detergent"

My Facebook account has been compromised and I currently cannot access it. Please read on for more information…

This is an update about the situation with my Facebook account. I am getting hammered with Facebook message email notifications with questions and comments. Facebook has not yet responded to my report (made yesterday) of suspicious activity on my account and my account is therefore still temporarily suspended (which occurred automatically when I clicked “submit” on the button to report the problem to Facebook. This temporary suspension is preventing me from logging in but appears NOT to prevent anyone and their sister or brother or cousin from sending/posting comments on my wall or to me (whether they are my Facebook friends or not). Don’t get me started that I am suddenly (for the first time ever) getting a slew of comments from people I’ve never even heard of. (I still am receiving the Facebook email notifications).

Since my settings are all locked in on “friends only”, I should not be getting the comments from strangers that started flooding my email today.

Again, I am unable to login to reply to any questions/comments from my Facebook friends at this time.

I received many messages today from complete strangers who are not my Facebook friends. So, it would appear that my account was indeed compromised. Needless to say, I am incredibly frustrated that I am unable to communicate with my own Facebook friends when I’m getting hammered with (Facebook) email notifications from them (and from total strangers).

I have received a couple of messages from people (my Facebook friends) with security tips. Thank you. I appreciate your concern and want to explain that:

1) I am unable to personally respond to your suggestions since she can’t access my own Facebook account.

2) I don’t use cookies, have good virus protection, and I regularly perform full scans on my PC. This isn’t a virus on my PC. This is a Facebook issue. There are no problems with any other sites.

3) I have high security/privacy settings set up. (I have “friends only” on all of the settings, I have Ad Block set up through my Firefox Internet browser and therefore don’t ever even see ANY Facebook ads, I don’t play 3rd party applications like Farmville, etc).

4) Even if there were settings that needed beefing up, I cannot login to my own account at this time. So, any suggestions that anyone is sending me on how to set up my Facebook account are a moot point since I’m locked out of my account. (Which is not to say I don’t appreciate the thoughts)!

R.I.P.
Twitter account known as @jeanneendo
July 13, 2008 – November 11, 2009

For those of you who aren’t aware, my Twitter account was attacked by an impostor in October 2009. I subsequently decided to leave Twitter and closed my account there out. See this link for more information on the “Twitter Trauma”:

Why I Left Twitter

I am getting hammered with Facebook notification emails that I do not have the ability to respond to since I can’t even login.

So, please understand that any messages you’ve sent me that have not been replied to are in limbo as long as it takes for Facebook to restore my account access (i.e. possibly indefinitely). In other words, I need to give serious thought to whether I want to keep using Facebook.

Again referring back to the Twitter impostor incident in October 2009, it took 27 days of me badgering Twitter (up to 8 emails to Twitter per day) before they finally closed the impostor account. So, I know what it’s like to have many people sending me messages at once and not be able to respond to them. Let’s just say I am NOT thrilled. I’m not thrilled that I can’t reply to my Facebook friends and I’m really not thrilled to have my inbox get hammered with messages from strangers! Essentially, this feels like déjà vu for me since I lived through a nightmare on Twitter that has too many parallels to what’s happening with my Facebook account.

I will ask a Facebook friend to post this blog post link on my Facebook wall to help get the word out to people about what’s happening. I am incredibly frustrated right now that despite being extra-cautious on Facebook, I find myself in a similar situation to what happened with my Twitter account.

If you have any messages for me, I ask that you please NOT post them on my wall and NOT send them to me as Facebook messages. This will add to the backlog of emails I already have and, to be honest, stress me out.

I am requesting that my Facebook friends send any messages for me via blog comment here on Chronic Healing (any post is fine). If you have a private message that you do not wish to have published on the blog, simply mark your blog comment “private” and it will not be posted online. I moderate ALL blog comments myself.

By leaving me a blog comment instead of a Facebook comment, you’re ensuring that I am the only person who sees your message (if it’s marked private), I’m not getting inundated with Facebook messages I have no means of replying to, and I am able to stay connected with you. I know from my Twitter experience that blog comments are the safest, easiest way to stay in touch with people I can’t connect with via “regular means”. I am on a self-hosted WordPress blog. So blog comments here are a safe means of communicating with me.

By the way, my WordPress contact form is broken. It’s been out of order for at least a couple of weeks. I’ve tried installing a new contact form to no avail. So, emailing me there will not work. I apologize for the inconvenience.

I thank you for your understanding while this gets sorted out. To say that I am less-than-thrilled with what’s happening with my Facebook account right now would be to put it mildly! I am incredibly careful regarding Internet privacy and security settings (down to even using a screen name on Facebook) and I am incredibly frustrated to be dealing with the stress of an inaccessible account as I get hammered with Facebook messages (from Facebook friends and strangers alike). It remains to be seen whether I will be able to return to Facebook (even if Facebook suddenly gets aggressive about addressing this problem). I am too sick to have the energy to play games with social media sites regarding security.

For now, the absolute best way to communicate with me is by leaving a comment on this very blog. Again, please mark your blog comment here “private” if you wish for me not to post it online. Thank you.

UPDATE (evening of 6/28/2010):

I have a slight update. I can login to Facebook again. However, Facebook has given me ZERO info on what happened or why.

They sent me this spectacularly unhelpful email:

Hi,

Our systems show that you have successfully completed the account recovery process. If you have any other questions about keeping your account secure, please visit our Security page.

Thanks,
The Facebook Team

Hmm. I figured out that I could login to Facebook again when I, you know, logged in. So, Facebook’s email noticing that I have logged in/recovered my account doesn’t tell me anything I don’t already know.

Considering that I had sent them a very detailed account of what I was concerned about, it would be helpful if they could acknowledge even having received my report of a concern.

Instead, I just got the automated email acknowledging that I have recovered my account. (Also, I received numerous Facebook email notifications in the two days I was locked out from strangers. There was a video posted on my wall that many people were leaving comments on. The video was tagged to a large number of people on Facebook, including me. The person showing up as having tagged me with it is a Facebook friend of mine but she relayed a message through a friend that she did not post the video on my wall).

Apparently, there is some sort of Facebook virus that periodically sends out videos that look like they are from her and that tag many people. While I was locked out of Facebook for two days, I continued to get Facebook email notifications. I just couldn’t reply to any of them. So, anyway, I haven’t decided if I’m going to keep my Facebook account or not.

This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.

“Peace is not something you wish for; it’s something you make, something you do, something you are, and something you give away.” ~~ Robert Fulghum

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Thank you to everyone for continuing to support this blog by shopping Amazon via my ads & spreading the word to others! So many of you have supported my blog in this way; I greatly appreciate your support!!

Thank you for your blog comments!

New to blog commenting? Just click “comments” below the post. If you grab a Gravatar, your picture will show with your comment.

>> Stumbling & tweeting my blog posts is greatly appreciated! <<

RT @jeanneendo: "Facebook Frenzy and Twitter Trauma"