Helping women with chronic illnesses
ChronicHealing.com

Category — Multiple Chemical Sensitivity

Down The Drain…

While I generally strive to focus my energy on things like gratitude, positive energy, and moving forward… there are times when I fill like my energy has just gone down the drain.


My blog post titles are generally a bit cheerier than today’s but the fact is that I am exhausted right now. Some days are like that. For several days now, I have wanted to write a blog post. However, I haven’t been able to summon up the energy until now.

Yesterday, I spent most of the day in bed. After having woken up with a migraine, I went back to bed shortly after I got up. My body was telling me in no uncertain terms to rest. So, I listened to my body.

This time of year saps my energy because the cold weather exacerbates my fibromyalgia. So, that is a factor in my drained energy too.

The altered schedule and additional responsibilities associated with the holidays are certainly a factor in how drained I am also.

How about you? Do you feel drained? Is your energy level lower than you would like it to be?



When your energy is drained, how do you rejuvenate?

Do you get extra sleep?


Do you listen to music? (Regular readers here know that the music that helps me the most when I need healing is that of Tori Amos). Whatever type of music you like, is it as powerful for you as it is for me?


Do you take a hot bath?


What do you do when you are feeling drained? What lifts your energy? Are you like me where a hot bath can help or make matters worse depending on just how low your energy level is? Are there times where you feel too dizzy or exhausted to take a hot bath? Are there other times where a hot bath makes you feel much better?

Other than getting additional rest, listening to music, and taking a hot bath… what activities are helpful to you? I would love to hear your feedback. What works for one person may not work best for another. However, I think it can be helpful to share coping strategies. Please share some of your coping skills.

What is in your bag of tricks?


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


If you’re like me, you find online shopping a helpful alternative. Thank you for supporting my blog by using my Amazon ads. I appreciate your support! ;)

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

January 5, 2011   18 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!!

Peace,

Jeanne



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


If you’re like me, you find online shopping a helpful alternative. Thank you for supporting my blog by using my Amazon ads. I appreciate your support! ;)

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:

CLICK HERE TO REGISTER. IT’S NOT TOO LATE!

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!

Peace…


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


If you’re like me, you find online shopping a helpful alternative. Thank you for supporting my blog by using my Amazon ads. I appreciate your support! ;)

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

Putting Out Fires And Coming Up Roses

This is the longest span of time there has ever been between blog posts here. I have been really busy offline “putting out fires”. I just wanted to make an appearance here so that no one thinks I have abandoned my blog.


The flare-ups of various conditions that I mentioned previously are ongoing. So, things are just challenging at the moment but I will try to get back into the swing of things as soon as I can.

I have been feeling quite overwhelmed lately and I look forward to getting things to calm down. I have been dealing with multiple crisis situations and it has been frustrating.


The fibromyalgia, interstitial cystitis and irritable bowel syndrome are all doing a little better now than they were a couple of days ago. Once I get through my third period in a month, I might start to feel better still. Let’s hope so.

Right now, I am trying to switch from fighting fires to implementing better self-care. I’m working on it.


I had a doctor’s appointment today. Someone on the staff wears a fragrance that makes me extremely ill. Despite the fact that it was rainy and cold, I waited outside until the doctor was ready to see me because waiting in the waiting room was completely out of the question. The receptionist was kind enough to bring my receipt and paperwork outside because I was unable to make it through the check-in process.


THAT is how strong the fragrance was. It is an hour drive home and I wasn’t going to risk fainting in the office or being unsafe to drive myself home from the appointment. On a more positive note, it isn’t snowing yet and there is a bench outside that is under the overhang of the roof. So, I didn’t have to get wet waiting outside or get sore (neuropathy) feet from standing. I was also extremely grateful that no one was smoking outside while I was there waiting!

The head pain that my primary care physician narrowed down to either cluster headaches or migraines a few months back is happening consistently with every period now. So, my head already hurt before I got to the fragranced office. I certainly wasn’t going to add to my head pain by staying in the waiting room. On a separate note, I asked my PCP to order a Vitamin D test. I got the lab results this week. Come to find out, my Vitamin D level is low. So, I owe my friend a thank you for encouraging me to get that checked.


To end things on a brighter note, my husband got a call today about a job he had interviewed for. I had written previously about the job situation. This company has interviewed him nine times. One of the interviewers wants to do a second interview on October 22nd. My husband is extremely excited about this interview because it is for the position he was the most excited about! (The company interviewed him for multiple positions in those previous nine interviews). So, let’s hope everything will be coming up roses soon with the job situation.


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


If you’re like me, you find online shopping a helpful alternative. Thank you for supporting my blog by using my Amazon ads. I appreciate your support! ;)

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

October 14, 2010   6 Comments

Fibromyalgia Flattened

Have you ever felt like you were flattened by a steamroller? Well, other than a few brief appearances here and there on Facebook, I haven’t been online much. The fibromyalgia flare-up that began several weeks back escalated within the last couple of weeks. There have been times where I have felt like I was just flattened by fibromyalgia. Getting out of bed in the morning has been a Herculean feat. The stiffness and pain have been really intense in the morning. Some days it has been difficult to walk from room to room. Every day, I have had severe head to toe pain.

On days like today when it rains, I dread the idea of needing to go outside. Rainy days aren’t just a problem if I venture outside. I don’t have to go or look outside to know it’s rainy. I can feel it no matter where I am. Sometimes, I feel like a human weather vane. I know the air will hurt my skin stepping out into a rainy day. My body feels like one big bruise. Everything really hurts.

I love fall. I always have. Fibromyalgia will not steal my love of fall from me. At the same time, as I wrote last year in Fibro Fall, I am fully aware that the change of seasons from summer to fall wreaks havoc on my body. It is what it is. I can’t control the weather.

On Saturday, I had my regular acupuncture appointment. When I have an appointment, I inform my acupuncturist about which symptoms have been bothering me since my last appointment. Needless to say, I filled him in on the fact that my fibromyalgia pain has been flaring-up badly. I was so happy that my acupuncture appointment was on Saturday. I love acupuncture so much!

In addition to this fibromyalgia flare-up, I have been dealing with an interstitial cystitis (IC) flare-up. (I am thankful that I have the ability to do bladder instillations at home). As is so often the case when my IC flares up, my irritable bowel syndrome (IBS) has been flaring up too. Somewhere in there I had a period that was more challenging than most. The cyclical rectal bleeding that prompted colonoscopy number four in April 2009, which I wrote about previously here (Colonoscopy Results With Pictures) was worse than usual. (If you have cyclical rectal bleeding and your doctors tell you it is unrelated to endometriosis, just know that there are other patients who have this. See your doctor if you have this symptom). In my case, the bleeding happens every month and generally precedes my period by two days.

In addition, my head was killing me during my period (as happens with every period now, to one degree or another). So, I haven’t been up to writing lately. Throw in a few mild multiple chemical sensitivity (MCS) reactions for having the audacity to leave the house for good measure and it has been challenging the last couple of weeks.

Anyhow, my fibromyalgia is still flaring but I am doing better than a few days ago. This is quite possibly related to the fact that I had acupuncture on Saturday. Having talked with many online friends who have fibromyalgia, I know that I am not alone in having a flare-up now. My thoughts go out to fellow patients who are dealing with increased pain at this time. I have been feeling flattened by fibromyalgia. If only the fibromyalgia itself could be flattened instead of the other way around.

On a random side note, I would like to thank my Facebook friends for supporting this blog on NetworkedBlogs and helping it to be ranked in first place there for endometriosis blogs. Interested in following this blog on NetworkedBlogs on Facebook? Just click here: here. Thank you.


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


If you’re like me, you find online shopping a helpful alternative. Thank you for supporting my blog by using my Amazon ads. I appreciate your support! ;)

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

September 27, 2010   29 Comments

World Suicide Prevention Day September 10, 2010

As I have mentioned in previous blog posts, this blog gets daily visitors who have searched phrases such as “endometriosis suicide” before reaching my blog. This has become a major concern for me, especially in light of the fact that my friend and fellow blogger Endochick receives similar visits to her blog on a daily basis. I feel a responsibility to speak out about this topic.

Last night, I received a private message from an online friend who had been having suicidal thoughts. While I have had a National Suicide Prevention Lifeline posted in my blog’s sidebar for some time now, it is designed for callers in the United States. I rapidly began searching for resources in other parts of the world. This post will include some of the resources I found.

Friday, September 10, 2010 is World Suicide Prevention Day 2010. For more information on it, click below:

International Association for Suicide Prevention (IASP): World Suicide Prevention Day – 10 September, 2010

Learn more:

International Association for Suicide Prevention (IASP)

Next, please check out this important campaign:

Take 5 To Save Lives (Click image above for information).

Interested in joining the Take 5 To Save Lives Campaign on Facebook?

Just click the link above for more information.

Suicide hotlines/lifelines:

Please note this list is not exhaustive. If your area is not listed below, please consult the link below marked “INTERNATIONAL: World-Wide Suicide & Crisis Hotlines”.

National Suicide Prevention Lifeline:
1-800-273-TALK

Red Nacional de Prevención del Suicidio:
1-888-628-9454

Veterans Suicide Prevention Hotline:
1-800-273-TALK, Veterans Press 1

INTERNATIONAL: World-Wide Suicide & Crisis Hotlines:
See site above (INTERNATIONAL: World-Wide Suicide & Crisis Hotlines) for information, based on your geographical area.

SAMARITANS:
Ireland & UK; Scotland; Wales; England (please see site above for details)

Last but not least, I posted this Facebook status last night and I wanted to share it here as well:

This Friday is World Suicide Prevention Day. If you know someone you think may be having suicidal thoughts/at risk of suicide, please refer them to a suicide prevention hotline and encourage them to seek medical attention from trained healthcare professionals.

The outpouring of information and support last night on Facebook when I was looking for resources outside the US for my online friend in need was just incredible. If anyone reading this is having suicidal thoughts, please know that there are resources available to help. There are people trained to handle such crises. There are healthcare professionals trained to assist with these matters. If anyone reading this is having suicidal thoughts, please seek treatment from qualified professionals and take advantage of the 24/7 hotlines available to help in these situations.

I purposely decided to post this a day early for World Suicide Prevention Day. Perhaps someone reading this will decide to post a link on Twitter or Facebook about World Suicide Prevention Day. Perhaps someone reading this will even consider writing their own blog post about it?

Many people responded to my request for information about suicide prevention hotlines last night. Some have had their lives personally touched by tragedy. Some had suicidal thoughts themselves in the past. Others have worked on suicide prevention hotlines or are active in advocacy work regarding suicide prevention.

Whatever the case may be, the response last night when I put a call out for information on Facebook was striking. There are a great number of people who really care about this issue. The topic of suicide may be stigmatized BUT there are many people who are willing to speak out about it and help direct people to the resources they need.

Check out the YouTube Channel for the National Suicide Prevention Lifeline by clicking the image below:

I urge anyone having suicidal thoughts to seek help from professionals trained to handle these situations.


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


If you’re like me, you find online shopping a helpful alternative. Thank you for supporting my blog by using my Amazon ads. I appreciate your support! ;)

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

September 9, 2010   10 Comments

Endometriosis Apathy?

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

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

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

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

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

Graphic no longer exists

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

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

An estimated 89 MILLION women and girls worldwide have endometriosis!

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

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

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

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

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

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

Five ways to help the endometriosis cause:

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

GoPetition

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.


If you’re like me, you find online shopping a helpful alternative. Thank you for supporting my blog by using my Amazon ads. I appreciate your support! ;)

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

August 1, 2010   21 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,
Jeanne

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

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

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


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


If you’re like me, you find online shopping a helpful alternative. Thank you for supporting my blog by using my Amazon ads. I appreciate your support! ;)

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?

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.


If you’re like me, you find online shopping a helpful alternative. Thank you for supporting my blog by using my Amazon ads. I appreciate your support! ;)

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

Travel Triumph!

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

Behold venue number one, the Columbus Museum of Art:

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

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

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

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

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

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

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

Destination? Columbus!

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

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

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

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

Behold venue number two… Franklin Park Conservatory:

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

Photos above courtesy of dear husband and me.

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

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

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

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

Lino Tagliapietra

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

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

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

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


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


If you’re like me, you find online shopping a helpful alternative. Thank you for supporting my blog by using my Amazon ads. I appreciate your support! ;)

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

June 22, 2010   16 Comments