Helping women with chronic illnesses

Category — Environment

Major Migraine Month

The best way to sum up the past month health-wise is:
My head hurt every day.

The migraine pain (over the past month) has ranged from mild at times to very severe at other times but it has never left completely (except for about three hours one day and for a couple of hours another day when I thought it was leaving but it quickly came back full force – even harder than before).

Sensitivity to light and sound have been severe all month. Sounds I normally wouldn’t be bothered by are very painful to my ears and head. I have had waves of nausea coming and going. Occasionally one eyeball will hurt for about two to three hours before dissipating.

Yesterday was the lowest level of migraine pain I have had since March 31st. I started to think the migraine was finally lifting. When I woke up today, my head was still not normal but I would no longer call what I have today migraine pain. I believe that I am now in the postdrome phase described here. I am hoping that my head will feel 100% normal soon. It has fooled me before but I think it’s really lifting this time. Time will tell.

Unfortunately, I don’t have the energy to write in very much detail about what has been happening with my migraines these last few months. In a nutshell, though, I was having some reduction in the number and frequency of migraines (after starting both physical therapy for cervicogenic triggers for migraines and acupuncture to treat migraines). I was still getting migraines but they weren’t as bad once I had started the cervicogenic migraine physical therapy and acupuncture focused on them. I was grateful to have some improvement. I knew there was no quick fix and that any improvement was worth appreciation.

Prior to starting physical therapy and acupuncture for migraines, I had noticed patterns in the timing of my migraines that suggested hormonal fluctuation is one of the major migraine triggers for me. The wonderful physical therapist who has been working on treating the migraines triggered by cervicogenic issues thinks I need to talk to my doctor about the hormonal situation. I plan to do so in my next appointment with my primary care physician (next week).

In the meantime, I saw the neurologist Thursday and it was an enormous waste of time. It was difficult for me to drive to/from that appointment. (If I don’t feel like it’s safe for me to drive, I don’t… no matter what I have scheduled. It’s not worth risking an accident). For nearly three weeks, I didn’t even feel it was safe to drive around town – much less to an appointment an hour away. Thursday was only the second time in a month that I had driven for more than five minutes. The amount of time, money and energy that were utterly wasted on that appointment totally frustrated me. That tale is far too exhausting for me to relive at the moment but the good news is that the brain MRI (looking for multiple sclerosis) yielded normal results. Maybe someday I’ll have the energy to get into more detail regarding why I believe the neurologist appointment Thursday was a waste of time.

I haven’t been online much but on the rare occasions that I have, I’ve gotten great support from other people who experience migraines. Let’s just say that apparently I’m not the only one who has experienced difficulty in finding a good neurologist for treating migraines. Thank you to those of you who have reached out to me regarding your own experiences with and knowledge of migraines. I really appreciate your support.

Now, please bear with me for going on a tangent about sleep apnea treatment… I had previously mentioned in passing the difficulty I have had finding a CPAP headgear to treat my sleep apnea. I got a new CPAP headgear on March 24th. I was very excited that (after years of unsuccessfully trying to find a headgear that my head could physically tolerate – no matter how carefully I screened out ones with materials I have a known allergy or sensitivity to), I had found one my head could physically tolerate (no sores on my head due to a reaction to the material of the headgear)! The fact that I had finally found one (pictured) that I wore night after night with no adverse reaction on my scalp was the good news.

Click for photo source.

The bad news is that the daytime fatigue and sleepiness I have experienced in about the last month (despite having gotten plenty of sleep at night… more than usual, in fact) has been so severe that I decided about a week ago to try not using the CPAP for awhile to see if the fatigue improves. (I am currently trying to determine whether the new plastic tubing for my CPAP machine might be out-gassing chemicals that are exacerbating my multiple chemical sensitivity, whether the fatigue is migraine-induced, or both). Since stopping CPAP about a week ago, the fatigue has improved a bit. However, the migraine has improved in that time too. So, it remains to be seen what caused the incapacitating fatigue and sleepiness I have been experiencing in the past month. I would very much like to go back to wearing my newest headgear, pictured above, if I can rule out the plastic tubing that attaches to it as causing any of my fatigue and sleepiness problems in the last few weeks. I know the risks of untreated sleep apnea (i.e. that cardiovascular trouble has been found to be up to three times more likely):

Click for photo source.

Needless to say, I am anxious to resume treatment for the sleep apnea since I don’t wish to increase my odds of having cardiovascular trouble. I’ve tried running the CPAP machine when I’m not wearing it to flush out the plastic tubing but I’m not sure how much good that has done, if the tubing is causing symptoms. I washed the tubing with distilled water, as directed, before using it. Other than allowing it to air out over time, I don’t really know how I can get it to out-gas more quickly.

Hopefully, the fatigue is from the migraines and not the CPAP tubing and I will be able to resume wearing my CPAP headgear soon.

My husband reports my snoring had stopped when I was using CPAP. According to the doctor who ordered the sleep study that diagnosed the sleep apnea, treating that should help the symptoms of all of my illnesses (since it’s not healthy to stop breathing throughout the night). The sleep disorder clinic had told me when I was diagnosed with obstructive sleep apnea that they recorded zero restorative sleep for me. Zero. I hadn’t had dreams in many years because I never reached that stage of sleep. With the CPAP machine, I was having dreams. That tells me I was getting into a deeper level of sleep than I had in years. Yet I was more tired than ever when I woke up each day. So, the trick now is to sort out whether the new plastic tubing is out-gassing chemicals that are causing the fatigue and sleepiness or not. In the meantime, I am seeing how I fare without it. Since the severe fatigue and sleepiness started right about when I started the CPAP and right about when this most recent migraine started, it’s hard to know for sure what’s the cause.

Managing the migraines and sorting out whether the CPAP machine is or isn’t causing the severe fatigue/sleepiness are what I’ve been focusing on lately. Other factors have prevented me from being online very much as well. Thank you for your patience. I am going to try to resume a more typical schedule for blog posts as soon as I am able. Several of you have sent me messages asking how things are going lately. I appreciate you thinking of me and would like to thank you for your support.

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

New to blog commenting? Just click “comments” below post. (If you set up a Gravatar, your picture will show when you comment).

April 30, 2011   12 Comments

Endometriosis: What Is Yellow-Washing?

Yesterday, I posted the following Facebook status. I didn’t take posting it lightly. After all, I am well aware that some of my own Facebook friends might not understand what my point is or agree with my perspective. Nevertheless, I decided it was a topic well worth discussion. So, I posted this comment yesterday afternoon:

CAUTION: Beware of yellow-washing. (Think pinkwashing only with yellow in its place).

Yesterday, as the first day of Endometriosis Awareness Month drew to a close… I found myself seeing an analogy between the pinkwashing phenomenon seen with breast cancer awareness and what struck me as a similar phenomenon involving the color yellow and endometriosis.

First, for those who are unfamiliar with the concept of pinkwashing… here is a definition of the term pinkwasher, courtesy of Think Before You Pink:

Pinkwasher: (pink’-wah-sher) noun. A company that purports to care about breast cancer by promoting a pink ribboned product, but manufactures products that are linked to the disease.

Definition source: HERE

So, one may ask, what does all of this have to do with endometriosis? Well, I have certainly seen companies claiming to help the endometriosis cause that have pushed or do push products linked to (possibly causing?!) infertility, reproductive problems, endocrine disruption, etc. This is nothing new. Does this get me really fired up? You bet.

I noticed online yesterday that site after site and organization after organization (festooned in yellow ribbons or selling paraphernalia that purports to “increase endometriosis awareness”) were, in some cases, making money off of enthusiastic patients who are, understandably, aching for increased awareness. (I saw sites raking in big donations and I saw sites pushing “endometriosis awareness” merchandise. I also saw what smacks of data mining on Facebook. How better to market “endometriosis awareness” wares than to create pages that attract patients? But I digress). There wasn’t an overt exchange of funds in all cases. However, the parallels I noticed yesterday between pinkwashing and, for lack of a better term, “yellow-washing” were, to me, undeniable.

I wish to be very, very clear that my intent is not to upset any endometriosis patients or dampen their enthusiasm at wearing yellow shirts and/or ribbons. It wasn’t very long ago that I was fairly decked out in yellow myself (or another color for another awareness month for another of my chronic illnesses). The thing is that over the course of time (nearly three decades of living with chronic illness), I have come to view things differently.

As I witness the effects of pinkwashing and I see what looks like the advent of yellow-washing unfurling for endometriosis, I can’t help but wonder whether the sea of yellow I encountered yesterday (in the course of just one day working online) – some of which was linked to sites that DO receive money – is helping the endometriosis cause or not? Again, I do not wish to upset any fellow patients who are excited and enthusiastic about “getting out the yellow” for Endometriosis Awareness Month. I just can’t help but question whether yellow-washing will be to endometriosis what pinkwashing is to breast cancer.

Will yellow-washing follow in the footsteps of pinkwashing? Are there more effective and/or less harmful ways of promoting endometriosis awareness besides assisting yellow-washing to grow into a pinkwashing mimic?

A friend of mine tells me that her husband, whose mother died of breast cancer, is totally frustrated with the pinkwashing phenomenon.

Dr. Diane Neal, who you may have met in yesterday’s post, has written research papers on endometriosis.

Starting this fall, she will teach health information science.

She wonders “if such merchandising might be funneling much-needed research money away from worthy projects”?

Speaking for myself, I would like to see the cause (or more likely causes) of endometriosis pinpointed so that research can be focused on how to prevent it (if that’s possible), reduce the chances of potential environmental factors from making matters worse (i.e. exposure to endocrine disruptors), and find ways for the average diagnosis of endometriosis not to take 10 years.

Preventing or minimizing endometriosis may not be the massive money-maker that treating (please don’t get me started on the endometriosis treatment options currently available) or trying to “cure” endometriosis after-the-fact.

I have lived with endometriosis for 29 years now. It pains me (no pun intended) to see how little has been accomplished in the last few decades. It disturbs me to witness women going through the same “rat’s maze” in 2011 that I did starting in the 1980s and 1990s. It really troubles me to see endometriosis patients turned into cash cows (something I have written about before: Endometriosis Patients Viewed As Cash Cows?).

I think pinkwashing may well be a harbinger. Personally, I don’t care to have yellow-washing join the ranks of pinkwashing (and greenwashing, for that matter).

For more about pinkwashing, breast cancer, and organizations that seek information on how to PREVENT illness (trigger alert for my infertile friends on some of the links below), see these articles and websites:

New York Times: Think About Pink

New site: Breast Cancer Action

Environmental Working Group

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

New to blog commenting? Just click “comments” below post. (If you set up a Gravatar, your picture will show when you comment).

March 2, 2011   8 Comments

Have A Happy, Healthier New Year And Thanks!

As 2010 draws to a close, I would like to thank everyone who took the time out of their busy lives to support Chronic Healing (here, by ‘liking’ the relatively new Facebook page, by “following” Chronic Healing on Facebook’s NetworkedBlogs, etc.)

From talking with many fellow chronic illness patients throughout the year, I know that some of you have suffered losses, setbacks, and escalation of symptoms. Some of you have suffered stress associated with physical pain, the financial burdens associated with chronic illness, and/or the emotional toll that illness or life circumstances have exacted.

Others have experienced progress in dealing with symptoms, in learning about previously unknown/poorly understood treatment options (i.e alternative medicine options that typical MDs don’t exactly dole out referrals to, generally speaking), or simply have learned better ways of managing the illness(es) in question.

Some of you have a complex combination of the above (i.e. 1 step forward and 2 steps back).

Some of you are fortunate to have a remission of symptoms but want to stay in the loop about the chronic illness(es) you have because you are fully aware that the illness(es) are incurable and you want to stay informed and linked to fellow patients.

Others of you aren’t chronically ill at all. Perhaps you are supporting a chronically ill loved one or friend by learning more about his/her condition. Or perhaps you are trying to learn more about chronic conditions for other reasons altogether!

Whatever it is that brings you to Chronic Healing, please know that your support is appreciated very much!!

Whatever category (or cross-section of categories) applies to you, I hope that you find Chronic Healing a safe place to turn to when you feel the need for support, information, and connection with others from the chronic illness community.

Sometimes the validation of knowing that there are others (many others!) who share the same chronic illnesses is helpful. The validation can provide major relief for patients who need to feel like someone “gets it”.

The degree of caring and compassion in the online chronic illness community is strong, powerful, and incredibly helpful to so many!

For those of you who have discovered Chronic Healing recently through the relatively new Facebook page, please be aware that there are over 400 posts on this blog itself. It may well be that there is a post (or many) that you can relate to. So, don’t be shy taking a peek through this blog. Some of those older posts might be helpful to you now even if it’s been awhile since they were written.

I cannot thank everyone enough for the blog comments, support, feedback, link-sharing, etc. It is a joy to interact with so many caring, kind, thoughtful individuals (ill or healthy!) in the course of my journey writing Chronic Healing and interacting with people on many other sites besides my blog, such as Facebook, as well.

The amount that I have learned from fellow patients since I started blogging in 2008 is mind-boggling. The 16 years I spent attending endometriosis support group meetings every month prior to starting my blog laid a foundation for me to be able to learn how to help connect patients with each other (once it had first been so wonderfully modeled for me, of course)! I am inspired every single day by fellow patients, activists (health or not), and all sorts of people who focus their PASSION on helping others and, basically, making the world a better place to live in!

I have laughed and cried with many of you. Some of you, I am just getting to know. All of you are appreciated! When I started my blog in 2008, I was nervous and unsure of what to expect. Obviously, I was excited too. However, there was plenty of uncertainty starting out… and starting a blog was something I thought about for a few months before diving in.

Now, 2.5 years later… I have a hard time remembering what life was like before I started writing my blog. It truly has been a life-altering experience.

I wish a HAPPY and HEALTHIER New Year to you all!!

Thank you!!



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

New to blog commenting? Just click “comments” below post. (If you set up a Gravatar, your picture will show when you comment).

December 31, 2010   9 Comments

Love Beats Hate: Blogging Event – Please Join Us!

The first two quotes below may seem like an unusual way to begin a piece on the topic of LOVE. However, I feel the need to provide some context. While my intention with my Love Beats Hate post is to focus 97% of my energy on writing about LOVE, I feel that before I can do that justice I need to very briefly address the topic of hate. The fact is that while this campaign was inspired by many things, the factor that is probably most responsible for its inception was something incredibly negative that appeared on a social media site.

“One’s dignity may be assaulted, vandalized and cruelly mocked, but cannot be taken away unless it is surrendered”.
~~ Michael J. Fox

This quote perfectly sums up my feelings in regard to the situation mentioned above. While the content that the individual in question posted was despicable and aimed at people belonging to various marginalized groups, the people he was attacking can choose how they respond. He does not have the power to take away anyone’s dignity. While the social media situation I just mentioned is one of the biggest factors that inspired this Love Beats Hate campaign, I wish to point out that individuals who spread such hatred online are the exception rather than the rule. There are far, far more people on the Internet (on social media sites, blogs, forums, etc.) who are caring for one another, supporting each other, and… yes… LOVING one another.

“Hate is too great a burden to bear. It injures the hater more than it injures the hated”.
~~ Coretta Scott King

The quote above really captures the notion that the person disseminating hate is actually harmed more by doing so than are any of his/her targets. While the primary targets in the very unfortunate situation I recently witnessed were people who have a disability or serious illness, other people from various marginalized groups were cruelly attacked there as well. It is empowering to know that we can choose how to react to such hatred and bullying. It is reassuring to know that for every one individual who spreads hatred online, there are far more people who conduct themselves in loving, positive, helpful ways!

Love Beats Hate

With so many people (both bloggers and non-bloggers) joining together to shine the spotlight on LOVE rather than on hate, it is easy to see how a negative situation can be turned into a positive one by speaking out on our own terms about the prevalence of countless examples of loving kindness found online… rather than surrendering to those who engage in spreading hate.

“The greatness of a community is most accurately measured by the compassionate actions of its members, … a heart of grace and a soul generated by love”.
~~ Coretta Scott King

If the greatness of a community is most accurately measured by the compassionate actions of its members, then I have been fortunate enough to discover an enormous number of locations on the Internet that are fairly brimming with love!

“Compassion is not religious business, it is human business, it is not luxury, it is essential for our own peace and mental stability, it is essential for human survival”.
~~ Dalai Lama

I believe it is important to share a determination to shine a spotlight on the positive end of the spectrum of online behavior. My goal here is to focus on the massive, seemingly endless supply of opportunities to interact online with people who exhibit loving kindness, compassion, support, caring, concern and so much more. Too often, our gaze may become focused on the extreme examples of negativity online (cyber-bullying, hate speech targeting marginalized groups, and general mean-spiritedness). To be clear, such negative spaces are real and I find them very troubling.

“Bullies are always cowards at heart and may be credited with a pretty safe instinct in scenting their prey.”
~~ Dr. Anna Julia Cooper

Let’s stop and think for a moment. How often do we hear news stories about positive uses of the Internet such as harnessing the power of social media for good causes that help people? How often do we hear about the benefits of people interacting with others online? Chronic illness patients can benefit even more than most, I believe, due to the nature of their situations. I believe the Internet is a PARTICULARLY valuable asset for people with chronic illness, chronic pain, and/or for persons with disabilities. People in these groups that can, at times, become isolated by their situations. For example, people with chronic conditions and/or people with disabilities sometimes find it more difficult to be out and about due to access issues or simply being too sick to leave the house. I have met many patients online, for example, who are housebound or bed-bound but are able to interact with people online thanks to the technology available today. This access to support is enormously helpful.

“Cruelty might be very human, and it might be cultural, but it’s not acceptable”.
~~ Jodie Foster

Again, bear with me while I touch on the negative to highlight the positive. How often have you flipped on the evening news to hear about subjects such as the unbelievable power of online support groups? (I’m guessing you haven’t seen such a story on the news lately… or maybe ever). How many times have you seen a story in the media about a community of patients (formed online and active entirely online) that rallies around all sorts of patients… including people who are housebound or confined to their beds… with their online friends as an important component of their ability to socialize with others and obtain support and information regarding their conditions? (Here I should point out that it is not appropriate for one patient to give another medical advice. I am referring to patients sharing information which can assist them in advocating for themselves when seeing their own physician/s).

Since I started a blog in June 2008, I have encountered a very diverse group of people online. Just as with life offline, there will always be bullies. However, my experience has been that the caring, thoughtful, considerate people far, far outweigh the bullies.

Whether it is on blogs, social media sites (like Facebook and Twitter), forums, etc., I have encountered some of the kindest, most empathetic, caring people online.

“Shower the people you love with love. Show them the way that you feel”.
~~ James Taylor

I have witnessed patients checking in on each other when one knows another is feeling particularly ill or has recently been hospitalized; I have seen people join forces to support causes they believe in that help people and literally make the world a better place; I have watched people transition from more “traditional” roles as patients to roles as passionate activists who fight for their cause(s) and advocate for themselves (in their own health care and on behalf of the patient population/s they belong to). All of the above are actions executed with love – both love for others and self-love…

“Compassionate action involves working with ourselves as much as working with others”.
~~ Pema Chodron

There is no shortage of love on the Internet. It’s everywhere. Are you skeptical of this notion? If this has not been your experience, maybe you just need to know where to look. For all of the negative stories about incidents that happen online, there are so many more that are positive!

This Love Beats Hate campaign was just started on November 10, 2010! Within only a week, a significant number of bloggers have registered to blog today about Love Beats Hate. Even more people have “liked” the Facebook page Love Beats Hate and/or marked the Love Beats Hate Blogging Event page to indicate that they will be participating in the event. Many others have sent messages on Twitter using the hashtag #LoveBeatsHate.

Please do continue to share information about today’s campaign on Facebook and Twitter. It would be wonderful if we can work cooperatively to share the blog posts of those who are blogging today on Love Beats Hate!

One does NOT need to have a blog (or the ability/time to blog today) to be a part of this event.

Here are some ways you can be a part of the Love Beats Hate event even if you don’t have a blog (or the ability/time to blog today):

  • Share links pertaining to this event on Facebook, Twitter, or via email. (Please use the hashtag #LoveBeatsHate for messages sent on Twitter about this event).
  • You can check the list of bloggers who have registered and simply read their blog posts about “Love Beats Hate” on 11/17.
  • If you wish, you can leave comments on one or more of these participating blogs to show your support for the “Love Beats Hate” campaign and to let the blog authors know what you think of what they have written.
  • On November 17th, you can visit the Love Beats Hate Blogging Event page. You never know who you might run into there. Chances are good that you will encounter a like-minded individual who cares about the event like you do.

In closing, I would like to encourage everyone to generously share the links to the pieces written by the bloggers who are writing for this event. I believe it can make a positive difference.

“A small body of determined spirits fired by an unquenchable faith in their mission can alter the course of history”.
~~ Mahatma Gandhi

I wish everyone reading this peace and happiness. I absolutely love blogging and one of the biggest reasons is the sense of love, support, and community I have experienced online. My only hope is that I can give back a fraction of the benefits I gain from interacting with people online.

“Happiness is when what you think, what you say, and what you do are in harmony”.
~~ Mahatma Gandhi

Let’s take care of each other out there. Let’s not let hatred get the attention. Let’s work to make LOVE so abundant that it cannot be ignored or overlooked. I believe we have the power to change the narrative. Let’s focus on fostering and recognizing the loving, caring, helpful actions and words online. This doesn’t mean burying our heads in the sand about the hatred that does exist online. However, let’s not get sucked in to a situation where we are feeding the energy of those who spew hatred. Instead, let’s join together to encourage and acknowledge the love around us each day online. Look around you. It’s everywhere! Let’s work to help each other. It makes us all stronger in the process.

“The best way to find yourself is to lose yourself in the service of others.”
~~ Mahatma Gandhi

It’s not too late to join this event. Please join us right here for blogging:


Again, there are many things you can do to support this event if you do not have a blog or are unable to publish a post today.

Looking for more information?

Love Beats Hate Facebook Page

Love Beats Hate Facebook Blogging Event Page

Or, just follow (and use!) the Twitter hashtag: #LoveBeatsHate.

Love Beats Hate!


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

New to blog commenting? Just click “comments” below post. (If you set up a Gravatar, your picture will show when you comment).

November 17, 2010   40 Comments

Migraine Denial and Ostrich Syndrome

My blog has been updated much less frequently lately. There are numerous health-related reasons for that and other reasons that are not health-related.

I wanted to do a brief post to explain one reason I have been scarce lately. Normally, I am not one to bury my head in the sand. At all. However, I will not lie… I have been very reluctant to add another diagnosis to my long list. So, I have been in some degree of denial. Alright, I now see it has most likely been a large degree of denial about one thing in particular… migraines.

Photo by Deborah Leigh.

One of several reasons I was forced to take a nap for several hours today was yet another migraine. Since all of my migraines are happening at period time, I believe hormones are a big factor. Since I had three periods last month (yes, I said three!), I was treated to three separate migraine episodes. (This three-period month was actually instrumental in dismantling my migraine denial. This month – now – the onset of my migraine directly preceded my period yet again). Whether this even-more-bizarre-than-usual cycle is perimenopause or not remains to be seen but I have no doubt that hormone fluctuations are affecting the migraines that I didn’t want to see when I was in Ostrich Syndrome. (Did I mention that I am emerging from Ostrich Syndrome?)

Due to my denial state, I have tried to explain away (to myself) what has been happening as “sinus headaches” or “stress headaches”… despite what my doctor told me awhile back. I was actually shocked tonight when I looked up the post I wrote about that encounter (with my primary care physician) because of how long ago it took place. It was in January! I had this notion in my head that this has been going on for six months at most. Really it has been going on the whole year. This just reinforced for me that I have been in denial. See previous post from when the symptoms started here:

Ten months is an extraordinarily long time for me to be in denial regarding a medical condition. As I said, I am not usually an ostrich. However, I have come to the conclusion that I have been in migraine denial. Goodbye, Ostrich Syndrome. Greetings, reality!

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

New to blog commenting? Just click “comments” below post. (If you set up a Gravatar, your picture will show when you comment).

November 9, 2010   9 Comments

Blog Action Day 2010: Water

Today is Blog Action Day 2010. The focus for Blog Action Day this year is water.

If you’re wondering why Blog Action Day decided to focus this year on the topic of water, just take a look here:

Interesting statistics about water

It is reported that 900 million people worldwide do not have access to clean water. The United Nations has declared access to clean water and sanitation a human right (see below):

General Assembly declares access to clean water and sanitation is a human right

Won’t you sign this petition to support the UN’s efforts to bring clean, safe water to millions?

Petitions by|Start a Petition »

In some parts of the world, we take clean water for granted. Sadly, there are other parts of the world where clean water is badly needed. Won’t you add your voice to the petition above? Thank you.

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

New to blog commenting? Just click “comments” below post. (If you set up a Gravatar, your picture will show when you comment).

October 15, 2010   11 Comments

MCS Letter To Oprah

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 me 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,

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 Copyright © Jeanne — All rights reserved.

New to blog commenting? Just click “comments” below post. (If you set up a Gravatar, your picture will show when you comment).

July 4, 2010   18 Comments

Plastic And Oil… And My Take On Dawn Dish Detergent

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?


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 Copyright © Jeanne — All rights reserved.

New to blog commenting? Just click “comments” below post. (If you set up a Gravatar, your picture will show when you comment).

June 30, 2010   32 Comments

Father’s Day and Infertility

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 Copyright © Jeanne — All rights reserved.

New to blog commenting? Just click “comments” below post. (If you set up a Gravatar, your picture will show when you comment).

June 16, 2010   4 Comments

Two Years: Reflecting

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Amanda’s Patch

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

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

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

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

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

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

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

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

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

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

Prize description of necklace:

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

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

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

Tiny Crystals Could Hold Key To Massive Computer Memory

Interesting, huh?

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

Thank you!

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

New to blog commenting? Just click “comments” below post. (If you set up a Gravatar, your picture will show when you comment).

June 1, 2010   26 Comments