Category — Endometriosis

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! <<

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! <<

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! <<

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! <<

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

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

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! <<

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 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!

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

Please note:

My purpose for writing this post is not to initiate a philosophical, religious, or ethical discussion about the topic of suicide. My purpose here is to address the traffic that my blog has been receiving on a daily basis. For several months now, my blog has been receiving daily traffic from people searching phrases such as “endometriosis and suicide” or “suicide endometriosis”. This may be a taboo subject but I can’t remain silent about it.

I have written about this topic previously here: Endometriosis and Suicide: Awareness and National Suicide Prevention Lifeline.

Recently, I learned through an endometriosis organization of yet another endometriosis patient having committed suicide. Also, this post In Memory Of An Endometriosis Patient has been receiving multiple visits in the last week. That post was about Kristi An Rose (March 11, 1978 – May 7, 2009). Her obituary is here from the Kokomo Tribune.

When the local endometriosis support group I started met monthly (2001- 2008), I got to know a woman who made multiple suicide attempts. (She has endometriosis and co-existing conditions to it and has debilitating pain).

It is very common for chronically ill patients to become depressed. While this (depression) is common with many chronic conditions, I am focusing on endometriosis in particular for this post because of the type of searches that are resulting in people landing on my blog. (Depression is a risk factor for suicide).

Endochick and I have talked extensively about the topic of blog traffic searching on phrases like “endometriosis and suicide” because she too has been getting daily traffic of the same sort I’m getting. We are concerned about the daily traffic regarding “endometriosis and suicide”.

The following award-winning video was posted on the National Suicide Prevention Lifeline site. After you hit play, I encourage you to click the option to view the extended version (about 15 minutes long).

Yesterday, when I checked the traffic statistics for my blog I was alarmed to find that “endometriosis and suicide” was the most-searched term that led people to my blog and “suicide endometriosis” was third-most-searched.

I feel I have a responsibility to continue to speak up about the 24 hour hotline (which is free of charge). Chronic pain/illness can lead to depression which can lead to suicidal ideations. However, help is available. If you are having suicidal thoughts, please call the hotline above 1-800-273-TALK.

After extensive searching online (hours), I was unable to find any research papers on endometriosis and suicide. Considering the amount of traffic this topic is generating online, I was hoping to find some research about it. The fact that I was unable to find any such research tells me that researchers have not paid enough attention to this issue. (When I widened my search to “chronic pain and suicide”, I didn’t fare much better).

The following is a quote from Matthew K. Nock (article below).

“Studies have repeatedly shown that most (>90%) of those who die by suicide have a mental disorder like depression, anxiety, conduct disorder, or substance use and so it is important also to screen for and treat these problems”.

While I’m fully aware of this statistic, my concern is that patients with chronic illness/pain (such as endometriosis patients) may not ever get properly diagnosed with, say, depression. After all, so many doctors treat their physical condition (endometriosis) as if it is some sort of psychosomatic condition that endometriosis patients are probably more likely than most NOT to seek treatment if depression does occur… because they may have spent many years trying to convince doctors, loved ones, and themselves that their problems are PHYSICAL. However, there is nothing saying they might not have physical and mental health issues.

Here is the Boston.com article I just referred to:

Matthew K. Nock’s work on Preventing suicide

This excerpt from the above article really surprised me… “more people die each year by suicide than by homicide or war”. In the comments to the article, he referenced statistics from the Centers for Disease Control. The statistics are startling.

Here is the CDC’s .PDF file called Suicide: Facts At A Glance.

As per the CDC link above, in 2006:

“More than 33,000 suicides occurred in the U.S. This is the equivalent of 91 suicides per day; one suicide every 16 minutes or 10.95 suicides per 100,000 population”.

Those numbers really jumped out at me. The notion that more people die each year by suicide than by homicide or war is mind-boggling.

Please, if you are having suicidal thoughts… seek professional help. Calling the lifeline listed above is a way to get started if you don’t know how to go about navigating the behavioral health care system.

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! <<

This year, I published two posts related to Mother’s Day and infertility (A Non Mother’s Day and Mother’s Day Mourning).

It is important to remember that Father’s Day can be a challenging and painful day as well. Men affected by infertility hurt too!

This RESOLVE: The National Infertility Association article may be helpful:

Coping With Mother’s Day and Father’s Day

Infertility affects couples in many different ways. It can be a crushing, devastating, consuming experience. Our society as a whole tends not to comprehend the degree of suffering involved. Many suffer in silence. Someone you know may be struggling with infertility (whether you are aware of it or not).

Often, people make comments to infertile patients that hurt long afterwards. Our society needs to do a better job supporting infertile couples. Typically, the media’s portrayal of infertility is not a very accurate depiction.

My thoughts heading into the upcoming weekend are with all of the men and women who are unable to become parents. (I decided not to wait on posting this because my blog has already had visitors to the post I wrote last year for Father’s Day. So, I thought it best to get something posted now… as some are already transitioning into activities such as traveling to see relatives, etc). In addition to keeping infertile couples in my thoughts, I’m thinking of those who have suffered pregnancy loss. (In some cases, couples fall into both categories).

Finally, Father’s Day can also be difficult for people unaffected by infertility. For example, it can be a difficult day for those who have lost their fathers or for parents who have lost their children.

Please keep those who are grieving or processing loss in your thoughts. 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! <<

Everything seems to be frozen now. No, I’m most definitely not talking temperature. Quite the contrary. My heat intolerance has been very challenging lately. (Cue the dysautonomia series re-post). No, I mean I’m frozen as far as writing blog posts right now.

No, I do not have a writer’s block. Quite the contrary. I have ideas about what to write fairly bursting out of my head. However, illness and time constraints have kept me from writing about even a fraction of what I’d like to be writing about. So, bear with me. I’ll try to catch up as soon as I am able.

Those of you connected with me on Facebook heard bits and pieces about why I narrowly averted a trip to the emergency room on Saturday (long story requiring a future post). I’m grateful to be doing better than I was Saturday but I’m still having considerable pain. So, bear with me. I’m sure with this hot weather I won’t stay frozen for long! Stay tuned!

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! <<

We have a winner! Recently, I wrote about this blog’s two year anniversary: Two Years: Reflecting and was overwhelmed with the thoughtful responses it elicited. (Thank you, everyone!) The randomly picked comment number that determined the winner of the contest was number 11. Endochick left comment number 11.

Congratulations Endochick!

Longtime readers here may not recognize Endochick as she has lost a significant amount of weight. Look at her. Doesn’t she look like a teenager now?

Here, again, is the beautiful, handmade amethyst and aventurine healing crystal necklace she won… which was generously donated by Amanda of Amanda’s Patch:

Thank you to Amanda for the generous donation and congratulations to Endochick!

So, we’re done, right?

Wait! There’s more…

Endochick is looking for endometriosis patients:

Endometriosis Patients Needed

Here is some information from Endochick regarding the work that she is doing as part of her graduate school program for an M.S. degree in Patient Safety:

“As per graduate school requirement, I am conducting research on endometriosis patients and their relationship with physicians. Your name, address, phone number, and other personal data is not needed. All I will initially need is your current age, age of diagnosis, and date of your diagnostic laparoscopy (or other pelvic surgery where endometriosis was initially discovered). I will then send qualified women a questionnaire to fill out, at their convenience, and return to me via e-mail”…

“Thank you. Hopefully together we can improve the patient-physician relationship, increase communication, and reduce errors that occur with endometriosis patients”.

For more information, please see Endochick’s post about this research RIGHT HERE. Also, please spread the word about her endometriosis research via Twitter, Facebook, email, blog posts, and word of mouth. Endochick is extremely passionate about the endometriosis cause and the more people we can get the word out to, the better! Thank you!

So, endometriosis patients… you’re headed over to Endochick’s blog right now, aren’t you?

Thank you very much!

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! <<