Category — Endometriosis

This week, I came across an abstract that riveted my attention:

Endometriosis-associated Serous Borderline Tumor and Endometrial Stromal Sarcoma of the Ovary: A Report of a Rare Lesion in an Infant

[Trigger alert: Before I proceed, there are some photos of young children in a video clip at the end of the post. I just wanted to let those who are struggling with infertility know that before you scroll down any further].

Personally, I think that this child’s case could provide endometriosis researchers important clues. My hope is that the researchers will continue to follow this child with long-term studies. I believe doing so may benefit not just the child mentioned in the article but the endometriosis community as a whole.

Having never heard of an 18 month old child diagnosed with endometriosis, my curiosity was immediately piqued. As it turns out, this is the first such case ever reported. Prior to reading the actual article, the first thought that popped into my head having seen the abstract was, “I wonder if the fact that this child is in Hong Kong has anything to do with it since that area is known to be very high in dioxin”.

The article did not mention dioxin. The thought that popped into my head was simple wondering on my part that was rooted in the fact that I have read about and seen videos clips over the years regarding waste management practices in China (and the sad fact that many countries ship their toxic garbage there illegally).

Since the medical community has not agreed upon “the cause” of endometriosis (and since I personally suspect there are many causes), I don’t think anyone can say why this 18 month old girl has endometriosis.

The case report titled, “Endometriosis-associated Serous Borderline Tumor and Endometrial Stromal Sarcoma of the Ovary: A Report of a Rare Lesion in an Infant” was published in the International Journal of Gynecological Pathology (January 2012 – Volume 31 – Issue 1 – p 98–102).

The full article can be accessed here and the authors are: Ronnie S.L. Ho, M.B.B.S., Godfrey C.F. Chan, M.D., F.R.C.P., Shau Yin Ha, M.B.B.S., F.R.C.P., and Philip P.C. Ip, M.B., Ch.B., F.R.C.Path.

From that article:

“There was no maternal history of endometriosis and the mother herself did not take any hormonal medication either prenatally, or during the 1 week of breast feeding after the child was born. On physical examination, the child showed no evidence of precocious puberty or thelarche.”

Back to the topic of endometriosis in general… There is no established cause of endometriosis. There are numerous theories (and some of them make sense to me). In my opinion, there may never be a sole cause of endometriosis that is agreed-upon by the medical community. I suspect that there are causes (plural) of endometriosis. There is some research that points to things that are linked to endometriosis and they may well be determined at a later date to be within the multiple causes I suspect are behind endometriosis.

One thing that has been linked to endometriosis is dioxin.

For those who are not familiar with the studies done on rhesus monkeys regarding endometriosis and dioxin exposure, click here for more info. That link goes on to say:

“Based on animal studies and observation of wildlife, impaired fertility is a result of exposure to endocrine disruptors. Infertility affects approximately 40% of women with endometriosis”

From Greenpeace:

There has been much attention to the topic of toxin emissions in Hong Kong:

Again, on a hopeful note I really do think that this case of the 18 month old diagnosed with endometriosis could provide endometriosis researchers important clues. Obviously, my heart goes out to the child and her family. I cannot imagine what it would be like to have an 18 month old child be diagnosed with endometriosis. I certainly don’t mean to be insensitive to the child or her family when I suggest her case may provide hope for the endometriosis community and possible clues for researchers. I just think that the mere fact that an 18 month old child has been diagnosed with endometriosis throws a total curve ball at the notion some doctors have had (the theory some doctors speak of as if it’s a/the cause: retrograde menstruation). Obviously, retrograde menstruation was not behind this child’s case of endometriosis!

As I indicated earlier, the question I posed initially wasn’t really a fair one. To my knowledge, no one can definitively answer the question I posed up front…

Could Endometriosis Diagnosed In 18 Month Old Be Related to Toxins?

Closing on a sober note…

In the course of searching online about dioxins in China for this blog post, I came across the following video clip. I’ve seen videos before about waste management practices in China and the high rates of dioxin there. This segment tied that together with discarded goods that are illegally shipped to China. What are your thoughts on it?

(I apologize in advance for any ads that may appear within the following clip. I don’t have any control over the ads CBS includes).

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Thanks to seeing Kelly’s post on Twin Peas Blog and Podcast, it came to my attention that there is infertility-related legislation pending at the federal level that affects people in the United States.

As anyone struggling with infertility can tell you, medical treatment for infertility can be extremely expensive. There are very few states with legislation that financially assists those struggling with infertility. Federal legislation (details below) that will assist those struggling with infertility is certainly a step in the right direction.

The more people who take just a moment to speak up about why this is important, the better the chances that it will become law.

As mentioned in the proposed legislation:

“The World Health Organization formally recognizes infertility as a disease, and the Centers for Disease Control and Prevention have stated that infertility is an emerging public health priority”.

Let me say that again because it bears repeating…

People who struggle with infertility are no less entitled to appropriate medical treatment than people with other medical conditions. It is discriminatory to deny medical treatment for infertility. By enacting legislation that will make infertility treatment more affordable, the unfair cost burden that infertile couples face for uncovered or under-covered infertility treatment will not disappear but it will be lessened.

The RESOLVE site has links that will quickly and easily direct you to the information you need to contact your legislators to express your support for Family Act of 2011, S 965.

Visit RESOLVE for information on how you can help.

Not directly affected by infertility? Before you move on, please consider this:

Infertility affects approximately 10% of the population. Since infertility strikes diverse groups-affecting people from all socioeconomic levels and cutting across all racial, ethnic and religious lines… chances are great that a friend, relative, neighbor – or perhaps you – are attempting to cope with the medical and emotional aspects of infertility.

Infertility treatment is expensive and even when there is coverage, the out of pocket expenses can be cost-prohibitive. Why not take a moment, using the RESOLVE link to access the information needed, to support those around you who struggle with infertility (or to speak up for yourself)? It only takes a moment and the more voices the legislators hear from, the better. Please spread the word about this legislation on social media sites such as Facebook and Twitter too. Feel free to post this link to help get the word out. If you have a blog, please consider mentioning this legislation there.

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Recently, I asked a friend who is struggling with infertility if her husband might be interested in writing a guest post here regarding Father’s Day and infertility. I floated this idea out a few weeks in advance because I knew that it would probably require some thought on his part (as to whether or not to write such a post). After all, it’s an emotional topic.

My friend later got back to me and let me know that her husband had given it some thought and had decided not to write such a post at this time. Apparently, though, my having posed the question about the guest blog post triggered some conversation for this couple.

I try not to make generalizations about one gender or another but over the years I have heard many cases of men who talk less about their infertility struggles than women while still being profoundly affected by the struggles. I myself believe that the way our society socializes boys and girls to grow into men and women has a lot to do with how readily men discuss their feelings about the infertility struggle… or not. Many men I know of (who are struggling with infertility) spend less time talking about it than their partners. However, that does not necessarily mean that they spend less time thinking about it or feeling the many emotions associated with infertility struggles.

I was reading the article Father’s Day and the Fertility Challenged. I think there are some men who seem less fazed by the hoopla surrounding Father’s Day than, say, their wives might regarding Mother’s Day. I understand the author’s point that the marketing for Father’s Day is typically more subtle than for Mother’s Day. At the same time, I wonder how many men are out there hurting, grieving, and suffering in silence. I wonder how many men don’t feel comfortable fully sharing their feelings of grief and loss.

Perhaps they have difficulty articulating these feelings? Perhaps they are watching their wives deal with the grief and loss and they wish to spare them additional pain? Pamela Mahoney Tsigdinos touched on this topic (how her husband coped) in her award-winning book Silent Sorority.

I think one of the most important things to remember is that men are affected profoundly by infertility struggles. They may or may not have easy access to the resources that can assist them in coping with their situation. Again, I don’t wish to over-generalize but based on my observations it seems that women struggling with infertility tend to have a better support system than men for dealing with it.

In the course of writing this post, I came across numerous articles regarding the topic “Father’s Day can be tough for men with male factor infertility”. While I have no doubt that this is true, I certainly don’t think that the challenges associated with infertility struggles (for men) are limited to those with male factor infertility. Whether infertility is determined to be male factor, female factor, or a combination of both… the challenges of infertility affect people in all of the above groups.

So, going back to the title of the post… Is it easier for men to deal with parenting holidays? I would argue ‘no’. Women struggling with infertility who undergo infertility treatment have to deal with hormones, injections, and various invasive procedures. This certainly adds layers of additional stress. At the same time, the men who love them and are by their sides throughout the treatment process are on the same complicated journey. They are there supporting and worrying about their wives.

It’s important not to overlook the feelings of men who struggle with infertility. If you know someone struggling with infertility and/or pregnancy loss, be aware that holiday weekends like this can be especially painful times. For couples who have struggled with miscarriages, holidays like this can be especially tough. Your support for your friends, co-workers, and loved ones who struggle with infertility may well make a frustrating, challenging, heartbreaking time just a little easier.

Finally, here is a link from RESOLVE: The National Infertility Association that some may find helpful:

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Given that I have not been feeling well enough to write a new blog post and the fact that I always write a post regarding Mother’s Day, I decided to post something short with a link to something I wrote last May. (I have already noticed many visitors to Mother’s Day posts from years past). With 1 in 8 couples affected by infertility, odds are good that you know someone struggling with infertility (whether you know it or not). Insensitive remarks and judgmental comments often drive those struggling with infertility to keep their struggle private.

This Mother’s Day, please show compassion to the women – and men – around you who are childless (whether they are childless by choice or not). We live in a child-centric society and being childless can feel very isolating. There are all sorts of reasons that people are childless. The last thing childless people need is to be judged by others or condescended to. Sadly, the childless people I have interacted with tend to get heaping doses of both judgment and condescension. Some people’s comments aren’t intended to be malicious but they are hurtful nonetheless.

If you have a friend or loved one who is struggling with infertility and you don’t know what to say/do to be supportive, the best thing you can do is take cues from that person/couple. They may wish to talk about it and they may not. They may be happy to tell you what is helpful and what is not. They may wish not to discuss it at all. Everyone is different and one person’s process for dealing with loss may differ quite a bit from another’s. By asking your friend or loved one how you can help, you show them that you care. Bear in mind that they are most likely inundated with unsolicited advice. This is why taking cues from them is really important.

This is a difficult time of year for anyone who has suffered a loss that results in Mother’s Day bringing up painful memories. This is not limited to those experiencing infertility and/or pregnancy loss.

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

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I haven’t written a blog post in a couple of weeks because I have had a migraine for 3.5 weeks now and I have been offline the vast majority of the time.

However, I did want to mention that this is National Infertility Awareness Week 2011. Please click the logo below for more information from RESOLVE: The National Infertility Association:

Infertility is a disease that affects 1 in 8 couples of childbearing age. Odds are good that you know people who are struggling with infertility (whether you are aware of it or not).

“Infertility is a disease that results in the abnormal functioning of the male or female reproductive system. Both the American Society for Reproductive Medicine (ASRM), World Health Organization (WHO) and the American College of Obstetricians and Gynecologists (ACOG) recognize infertility as a disease”. [Source: RESOLVE].

Please consider learning more about infertility. It is common for well-meaning people to make hurtful and insensitive remarks to people who are struggling with infertility. (Hopefully increased awareness will make this phenomenon less common).

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

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Knowledge is power. Chronically ill patients often spend an enormous amount of time and energy educating themselves about their illness(es) and networking with fellow patients. This increases their knowledge. Their personal experience as patients informs them too. For lack of a better term, let’s call this “patient power”.

While this post and the paper it links to talk about endometriosis, much of this could relate to any number of chronic illnesses. If you do not have endometriosis, please stick with me because you may find this post just as relevant to you with regard to another illness (or other illnesses). This is more about accessing health-related information than anything. Before I share a link to an article that Dr. Neal co-authored, let me share some background from my personal experience regarding searching for health-related information.

When I was diagnosed – via laparoscopic surgery – with endometriosis in 1992 (after living with undiagnosed endometriosis for 10 years), my doctor gave me next to zero information about endometriosis. (The very small amount of information he provided was a skimpy brochure from a pharmaceutical company pushing its drug. It was basically a sales pitch brochure. That’s all I was given). After that post-operative appointment, the very first place I went to for information was my trusty local library. This library had never failed me before. It was well-stocked and had a top-notch staff. I had literally never had a problem finding information there… until that day. I searched for information on endometriosis in the library and found nothing. I then requested assistance from one of the librarians. She wasn’t able to find any information on endometriosis either.

I left the library that day empty-handed and discouraged. As this was shortly before I had discovered a local support group, I had no one to talk with about endometriosis. (The doctor who diagnosed me ended up being less than helpful and I subsequently switched to a much better-qualified specialist with far greater knowledge about endometriosis). Back then, searching for health information online wasn’t an option for me either. (Yes, my younger readers… There was a time when patients couldn’t just search the Internet for health information. Try to imagine that)!

Anyhow, my first breakthrough at finding what turned out to be reliable information was gleaned after spending several hours sitting on the floor in the aisle of a Barnes & Noble bookstore combing through stacks and stacks of books (and copying down toll-free numbers of resources out of the backs of a couple of books I found after a long and tiring search). I exhausted kneeling and squatting in the aisles early on in my many-hour odyssey for information at the bookstore. It quickly became evident that I was going to be there for awhile! (Even my newly diagnosed self was able to determine that purchasing those books would not have been a good bargain for me. My budget was limited and the books were not exclusively about endometriosis. Basically, endometriosis was literally a footnote in these books. So, I just copied down the information I needed).

I quickly realized that access to a university library was imperative. By the time I was diagnosed with endometriosis, I was 23. So, I had already graduated from college. Fortunately, I had some wonderful friends who helped me get access to medical journals and such. I wanted to read anything I could get my hands on about endometriosis.

Fast forward from the early 1990s when I was diagnosed with the endometriosis I’d already lived with for 10 years… to the present day. If a patient were to walk into a library nowadays looking for information about a particular illness (such as endometriosis), what type of resources do you think most librarians would refer patients to? Would they point them to peer-reviewed medical journals? Would they direct them to books written by physicians? Would they make any mention of the Internet as a source for health-related information? If so, how would they determine what sites to point people to?

Diane M. Neal, PhD and Pamela J. McKenzie, PhD have written a fascinating paper.

I strongly encourage you to check it out, regardless of whether you have endometriosis or not:

“Traditional” sources of health-related information are obviously important but, in this paper, they make a case for the value of endometriosis blogs and other online sites as also being potential sources of valuable information. There can be significant differences in the quality of information from site to site. Essentially, Dr. Neal and Dr. McKenzie are highlighting the fact that endometriosis blogs (and other sources of endometriosis information online) should be considered as potentially valid sources when referring information seekers to endometriosis resources. Information from the medical community is important but information from the patient community matters too.

In my opinion, it is very exciting that this paper is a tool for educating librarians about how to incorporate health blogs (such as endometriosis blogs) as valid sources of information for people. As anyone who reads blogs or visits online support groups/forums can attest to, patients’ experiences really do have value and the community atmosphere online can give valuable emotional support as well.

When I asked Dr. Neal about the intentions of this article, she said, “what we were trying to do with the article was broaden the scope of librarians’ thinking beyond standard – or what we call ‘biomedical’ resources – like reference books, PubMed and such” and to “demonstrate how people’s concept of ‘authority’ is changing due to the social media world”. She said the new idea in the article, from an information science research perspective, was “affective authority”:

“In addition to making claims about the cognitive authority of sources, the authors found that bloggers made and contested claims for what might be called affective authority, the extent to which users think the information is subjectively appropriate, empathetic, emotionally supportive, and/or aesthetically pleasing”.

For me, it is really quite exciting to witness a situation where health-related information that is written from patients’ perspectives is being appreciated as a valuable source of information and support for patients (and others) seeking it.

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

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While I had many ideas for additional topics to cover this month, time has flown by and my energy has been limited. I decided to do a recap of the Endometriosis Awareness Month 2011 posts for those who may have missed one or more of them. First we heard from Dr. Diane Neal and Endochick in a guest blog post called:

Then I wrote this post about something I call “yellow-washing”:

Next I wrote this personal post regarding undiagnosed teenagers struggling with what may be endometriosis:

After that, I wrote about the importance of support here:

Following that, I talked about being sidetracked from Endometriosis Awareness Month by migraines:

Then, I wrote about the important topic of suicide prevention:

Finally, Jenn did a guest blog post about how chronic illnesses like endometriosis can affect one financially:

I would like to thank Diane, Endochick, and Jenn for taking the time and energy to write wonderful guest blog posts for Endometriosis Awareness Month. While I hoped to do more this month than I have, I have learned over the years that it isn’t wise to force my body beyond its limits. So, the many days this month when my body essentially told me, “no” when I asked it to do something, I didn’t force it. I listened to it because the consequences of not listening to one’s body can be pretty unpleasant.

I would like to thank everyone who has signed the petition and/or shared the link on social media:

Endometriosis Awareness Month may be drawing to a close but we collect signatures on that petition year-round. So, please continue to share that link on Facebook and Twitter. Just this month the petition gained 56 signatures. That’s not bad! Many who signed elected to use the optional field for comments. Reading through those comments, one cannot help but be moved and inspired to action. There is so much work to be done! Let’s keep getting the word out to people. Here is that link for the petition once again:

Thank you very much to everyone who has worked so hard and so passionately to spread the word about endometriosis, to foster awareness about it, and to take a close look at endometriosis organizations to ascertain whether they are advocating for patients as they claim. Taking the time to research organizations before supporting them (financially or otherwise) is worth the time and effort. Sadly there are organizations that purport to advocate for endometriosis patients but upon a bit of investigation, it becomes apparent that looks can be deceiving.

Thank you to everyone who is working to spread the facts about endometriosis and working to counter endometriosis misinformation.

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

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Previously this Endometriosis Awareness Month, you heard from Diane and Endochick in Voices On Endometriosis about ways in which endometriosis has impacted them. I had also asked my friend Jenn if she’d be willing to guest blog this month. Today, I am honored to share what she has written about the financial implications endometriosis has had for her.

Jenn is chronically healing from Stage IV endometriosis. She has a Master’s Degree in Liberal Studies with focuses in Conflict Management, Human Development & Family Studies and Sociology. She is a Certified Coach. She started her endo blog last year to chronicle her journey and struggles with endometriosis. She is always searching for alternative, complementary treatments and self-care options for women.

I was diagnosed with endometriosis six years ago after years of pain and misery. My life has changed in many ways because of my disease. Lately, the financial consequences of my endo weigh heavily on my mind. The largest financial toll has been over the last year.

I was incapacitated by my endometriosis symptoms in January 2010. My endo pain flared & raged and didn’t relent for months. I was unable to work. When my FMLA time ran out, I was given two medical leave extensions from my employer. I was healing from major surgery when my second extension expired and I was fired from my job. My employer said I “voluntarily abandoned” my position in a shady attempt to prevent my unemployment benefits.

I would have been able to return to work the week after I lost my job. I fought through two appeals with my former employer to receive unemployment.

The majority of our financial burden fell on my husband. Without him, I would not make it financially. My monthly unemployment amount isn’t enough to even pay my mortgage, not to mention my other bills. I am not complaining; I am grateful for the unemployment benefits. Still, the truth is, it’s tough to survive on the amount I receive. When my weekly benefit amount was determined, three months of my FMLA time were factored into the equation. In other words, three big fat zeroes were included in the average. Those zeroes did not help my cause.

I have been well enough to work for months but I haven’t had any luck finding a job. As the blank space widens between the present and my last job, I know my chances of finding work grow slimmer. How do I explain my joblessness to potential employers? It’s quite a dilemma. There’s no good response. The truth won’t help me secure a job. It’s hard to imagine an employer excited to hire a person who was too sick to work for six months. Besides, my medical condition and history should be private. The only other option is to be untruthful, but there isn’t a lie I can conjure to adequately explain my situation. Employers don’t like gaps in employment, period.

Now, add in all of the medical bills I acquired over the six month period — two surgeries, three ER visits, several doctors’ appointments, and expensive medication. Trust me, the math is depressing. When I was fired, I had just met my insurance out-of-pocket maximum for the year. I had to start all over with my new insurance. (My difficulty finding insurance coverage is a whole other story). The only insurance I was able to obtain comes with a hefty $5,000 deductible and they don’t pay a penny until I hit that amount. Ouch. Since I have no clue how my endo will progress from this point, I have no idea what medical needs may arise. Any medical care will be expensive. I guess I was lucky to even find an individual insurance plan though; my husband was denied coverage by every local insurance company due to a pre-existing condition.

My list of financial worries goes on and on and on. I don’t know if I’ll ever get back on track and it’s terrifying.

Most days, I don’t let money concerns consume me. I remind myself of all of my blessings. I try to keep it all in perspective and remember it is just money. However, I do have days when the weight of my financial worries collapse upon me and make it difficult to breathe. I need to have faith and believe I will make it through this tough time. When I get stressed about money, I have to remind myself that my financial troubles pale in comparison to the physical and emotional pain my endo symptoms have caused me.

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

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In the past, I have written many posts about the topic of suicide and about the frequency with which people search phrases like “endometriosis and suicide” before landing on my blog.

Endochick recently wrote this post: Why we need awareness #3.

While the three hour sampling of searches mentioned in that post did not include any about the topic of suicide, I know from talking with Endochick that her blog gets daily traffic on the topic, as does mine.

Since it is Endometriosis Awareness Month and multiple blogs get daily traffic on “endometriosis and suicide”, I decided that an important part of blogging for Endometriosis Awareness Month is to cover this topic.

There is more information about suicide HERE, HERE, and HERE.

Finally, I wrote about suicide prevention in general HERE after taking an informative class on suicide alertness.

If you are having thoughts of suicide, I urge you to contact one of the hotlines listed above. Please click the graphic above that pertains to your geographical area.

For more information on creating endometriosis awareness, please click below. Awareness is vital and help is available for those having thoughts of suicide. Please help us spread awareness about this serious illness.

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

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If you guessed number 3, you win the prize. Unfortunately, I have no prizes to give out. So, hopefully you will be satisfied to have as your prize the knowledge that you guessed right. Did the blog post title give it away?

Hopefully tomorrow’s acupuncture session will expedite getting this migraine to pass so that I can get back to working on Endometriosis Awareness Month. In the meantime, please sign and share the endometriosis awareness petition (see right sidebar for link).

P.S. For those wondering, my youthful skin took a hike awhile back and I don’t wear makeup. So, that leaves number 3 by process of elimination. While I cannot prove the woman pictured has a migraine, answer 3 is most logical due to process of elimination. Yes, I have insomnia that is making me punchy now. Thus the silly post.

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

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