Helping women with chronic illnesses

Category — Environment

Secondhand Smoke Stinks! (VIDEO)

This past weekend, my husband and I went out to dinner for our twelfth wedding anniversary. Sounds fun, right?

It did NOT go the way we planned. Today, I decided to make a video for Multiple Chemical Sensitivity (MCS) Awareness Month. Before posting this video, I want to emphasize that secondhand smoke is unhealthy for all. This video happens to focus on a reaction that I have been having and continue to have after last weekend’s secondhand smoke exposure. However, secondhand smoke is NOT just a health problem for the chemically sensitive.

Yesterday, I was in bed until about 6:30 pm. I was simply too weak and sore to get out of bed. I finally got up to eat dinner. Today is better than yesterday but I continue to have multiple symptoms. My voice is definitely stronger but I am in pain (head pain, throat pain, sinus pain, aches, etc.)

I failed to mention in the video clip below that the cigarettes that were smoked throughout our meal were joined by CIGARS by the time we high-tailed it out of there. No, I am not making this up. The wedding party was apparently all smoking cigars (according to the manager I encountered in the hallway by the gift shop… during the long, long wait for by check – by which time I had bailed out of the dining room). The cigars had apparently just started up. At this point, I re-entered the dining room to let my husband know I’d be outside and which door he needed to use to bypass the cigars.

Thus, we used an alternate exit and walked the long way around to get to our own car. Classic.

Transcript of video for anyone who had trouble hearing what I said:

Hi. This is Jeanne from Chronic Healing. My address is Chronic Healing and 4 days ago my husband and I went out to dinner for our anniversary. The reason that my voice is the way that it is now is from exposure to secondhand smoke and I’m wearing yellow because it’s MCS Awareness Month (MCS standing for multiple chemical sensitivity). I know that it’s hard to hear what I’m saying. So, I will put a full transcript on my blog. Again, that’s Chronic Healing at Chronic Healing but I wanted to make a video so that people could SEE and HEAR one of the ways that chemical sensitivity can affect someone like myself who has MCS. Secondhand smoke is not good for anybody but for somebody like myself who is extremely sensitive, it can cause all sorts of symptoms. In my case, a couple of days ago I couldn’t have made a video because you wouldn’t hear any sound at all. My voice has gone from no voice to weak to sounding like a bullfrog and it’ll probably be this way for a couple of weeks because I’ve had this happen enough times now to know. My sinuses have been really messed up; my head has been feeling like it’s going to explode; my throat was really, really sore for the first couple of days and it’s calming down a little bit now but it was extremely sore for the first couple of days. I live in a state which has had smoke-free restaurants for years. When I say “smoke-free” restaurants for years, that means INDOORS. That does not include OUTDOORS. There are now some states where you can’t smoke OUTDOORS (on patios and porches and things either). It just so happens that the restaurant that we went to for our anniversary was a restaurant in an inn where we had stayed overnight on our wedding night. We thought it would be nice to go out to dinner at this particular restaurant. That was my bright idea. BIG MISTAKE. We won’t be going back there. So, because there was a wedding party going on and everybody in the wedding party was smoking out on the porch (a few feet away outside the door of the dining room we were in), the smoke was blowing indoors. It was just as if they were sitting next to us smoking. It was just a very intense exposure and to top it off we had a server who was very slow with serving our table so that the exposure was prolonged with that. So, I just wanted to make a video so that people could get some kind of a visual and an audio example of one of many ways that secondhand smoke can cause an obvious, immediate effect. Obviously there are long term effects, like cancer, associated with secondhand smoke but I wanted to show how it can effect somebody like me in a more immediate sense. So, I hope you’ll check out my blog Chronic Healing at Chronic Healing and have a good day. Thank you.

By the way, I am not wearing my glasses in the above video because they were hurting my face. (My husband handed me my glasses when we were ready to film, saying “no one will recognize you without them”. My reply was, “I don’t care. My sinuses hurt. I’ll just explain to people why I skipped my glasses”… So, that’s the scoop with the missing glasses).

Link cited in the video:

American Lung Association link

Stats cited in the video (from above link):

“The U.S. Surgeon General concluded back in 2006 that nearly 50,000 Americans die each year from secondhand smoke exposure. The findings of this new Institute of Medicine (IOM) report are significant, because they confirm that secondhand smoke exposure is a significant cause of acute coronary events, including heart attacks, and that there is no safe level of exposure”.

I was supposed to have a medical appointment tomorrow. I had to reschedule it since I am in no shape to drive almost an hour each way to it. Dizziness and fatigue are not good ingredients for me when planning a drive to a medical appointment (all of my doctors are 45-60 minutes away… each way). I have learned there are times my body just can’t handle this. Considering that I couldn’t force myself out of bed until 6:30 pm yesterday, I concluded today that I’d better call and cancel tomorrow’s appointment.

Bear in mind, the secondhand smoke exposure was last Saturday and I had to cancel an appointment for tomorrow (Thursday). I have not yet determined what to do about another appointment I have scheduled for Friday. So, nearly a week after the exposure, I’m postponing or contemplating postponing my own medical appointments thanks to a secondhand smoke exposure on May 22nd.

Again, I wish to emphasize that secondhand smoke is not healthy for anyone.

Back to the topic of multiple chemical sensitivity (MCS). As with so many other illnesses, MCS comes in a wide variety of severities and symptoms can vary from person to person. To learn more about MCS, please check out my own personal favorite resource for MCS information:

The Canary Report

It is chock full of information on the topic of MCS. I highly recommend checking it out!

Finally, if you missed my recent post below, please check it out:

Riverdance Ruined?

It has gotten a fair amount of traffic and I thought it was worth mentioning again for those who may have missed it.

Thank you.

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

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May 27, 2010   20 Comments

When Rest Is Just Not Optional

Wow! It has been nine days since my last post. It is extremely unusual for me to have so much space between posts. However, my body has made it clear that I have reached the “rest is just not optional” zone. I have learned to heed the warnings from my body when things reach this zone.

Beginning HERE in March, I have been really busy working on various awareness days, weeks, and months. By “really busy”, I mean striving to avoid burnout. Too busy.

Some of the advocacy work I have been doing was posted here and other information was posted on other sites such as Facebook.

Also, I set up a new group in March called Endometriosis and MCS for patients who have both chemical sensitivity and endometriosis on The Canary Report’s NING network. Unfortunately, I have been so busy with all of the awareness activities that I haven’t really spent very much time, as of yet, on that group. However, the good news is that I have identified many women who have both chemical sensitivity and endometriosis and several of them have joined the group. So, I think we’ll get it active once things have calmed down and I have a chance to focus some energy on it. I believe it’s important to look at connections between conditions that have overlapping populations and look forward to talking with the group members who’ve already joined and those who will do so.

In addition to the awareness issues I’ve been working on, I picked up several Facebook friends who have interstitial cystitis (IC) during the course of Endometriosis Awareness Month. As many readers here are already aware, endometriosis and interstitial cystitis are considered to be co-existing (sometimes called “overlapping) conditions. Here is a shout-out to Melissa Bachoo. She is an IC patient I have had the privilege of getting to know via Facebook over the last few months and she is a very thoughtful, caring person. If you have IC and you are a Facebook user, I recommend getting connected with Melissa Bachoo.

I have had a great deal of off-blog communications 1:1 with people. While I am very happy to have gotten to know some new people and have also interacted with people I’ve known awhile, it does take time to try to keep up communications with people. If you are one of many people that sent me a message via Facebook or The Canary Report’s NING Network in March, April or May who I have yet to respond to, please consider this my blanket apology for recently finding it quite impossible to keep up with replies. I am not ignoring you and I’m really sorry for the delay. I have never felt so behind in replying to people’s messages. Please don’t take it personally. I have just been trying to tackle way too much in the last couple of months.

Regarding endometriosis and IC as overlapping conditions, please see related press release here from the Overlapping Conditions Alliance:

The Overlapping Conditions Alliance Launches the ‘Campaign to End Chronic Pain in Women’ on Capitol Hill, to Fight Discrimination Against Women in U.S. Healthcare

I am far too exhausted and drained right now to compile a comprehensive list of awareness posts from the last couple of months (which you can easily find in the archives or by searching via topic words). However, I did select a few recent posts that were either written specifically for awareness days/weeks/months or that were written during that same time period that I thought might be of interest. This is just a sampling. Again, there are more related posts available and I encourage you to check them out by using archives or search (both located in the right sidebar).

Here are some topics covered during the last couple of months in conjunction with awareness days, weeks, and/or months (in no particular order):




multiple chemical sensitivity (MCS)




endometriosis and MCS

Last but not least, I wanted to give a shout-out to a blogger I met relatively recently. Her name is Jenn and her relatively new blog has already covered an array of endometriosis-related topics. If you haven’t yet checked out her blog Endo Friendo, I encourage you to do so.

In the short time Jenn has been writing a blog, she has talked about alternative nausea treatment, preparing for surgery with methods like guided imagery and Jin Shin Jyutsu, infertility awareness week, our endometriosis awareness petition, and much more. Jenn is passionate about the endo cause and has a great sense of humor. She is a shining example of how not to let endometriosis get you down. Please drop by her blog and say hello. Her open-minded, caring manner makes her a pleasure to know. I feel like I’ve known her longer than I have thanks to our off-blog communication.

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

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May 21, 2010   9 Comments

A Non-Mother’s Day

Pamela Mahoney Tsigdinos, author of Silent Sorority.

Regular readers have heard me talk about Pamela’s book. This post (Silent Sorority Review) links to my book review of it on Amazon.

However, this post is about Pamela’s article featured today in New York Times Magazine’s… Motherlode: “A Non-Mother’s Day”.

Here is the link to Pamela’s new article:

Mother’s Day: A Cultural Crucible

Kelly Damron had this to say about Pamela’s guest blog article.

Regarding comments left on the article in the New York Times, I was saddened (but not surprised) to read some of the incredibly insensitive comments that some people posted regarding Pamela’s article. Our society has much room for improvement in regard to support for infertile couples. As Kelly alluded to in her blog post, adoption is not the right option for all infertile couples. Pamela’s book did a great job covering this topic.

As a side note, I highly recommend Pamela’s book. Some of those who commented on her New York Times article could really benefit from reading her book. It provides validation and support for those struggling with infertility, keen insights into what infertile couples struggle with for those who are fertile, and a road map for navigating the landmine-type atmosphere of battling infertility.

My hope is that someday the same type of insensitive comments that some people posted to Pamela’s article will not occur for future articles due to increased awareness, understanding, and sensitivity in our society regarding infertility. It saddens me that so many people seem to lack basic compassion and empathy for those who have struggled with or are struggling with infertility.

This Mother’s Day weekend, I wanted to leave you with Pamela’s article as a follow-up to my previous post, Mother’s Day Mourning.

My thoughts this Mother’s Day weekend are with the many men and women who are struggling with or have struggled with infertility. This is a challenging time of year for those who have lost loved ones as well. Please keep these people in your thoughts.

In addition to the insights provided by Pamela’s book, you can follow her newest blog A Fresh Start.

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

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May 8, 2010   4 Comments

Mother’s Day Mourning

This Sunday will be a day of mourning for many. For patients struggling with infertility, miscarriage, pregnancy loss, and adoption loss, Mother’s Day is a time of grief, exquisite pain, and sorrow. With 1 in 8 couples experiencing infertility, the odds are very good that someone you know is struggling with it. Due to societal stigma, privacy and other reasons, they may or may not share publicly about their struggle.

About 40% of patients with endometriosis will experience some degree of infertility. (Please note that worldwide there are 89 million patients with endometriosis, one of many possible causes of infertility).

Here is some information from RESOLVE: The National Infertility Association:

Coping with Mother’s Day and Father’s Day

Where’s My Card That Reads I Support You?

I think it’s worth noting that what is supportive and helpful for one friend or loved one might not be what’s best for another. The best way to know how to help an infertile friend or loved one is to ask them. Everyone grieves differently. One infertile friend might find that staying home on Mother’s Day and having some peaceful, quiet time is most helpful. Another infertile friend may be up to socializing. The bottom line is that we as a society should be sensitive to this issue and provide support to those who are struggling with infertility.

Offering platitudes or phrases meant to be helpful (that aren’t) can really hurt those who are enduring a painful struggle with infertility. If you’re tempted to share what worked for your cousin Donna or your sister Sue for getting pregnant, please resist the temptation. Infertile patients are bombarded with well-intentioned “advice”. Leave the medical advice to your friend’s physician.

Finally, there are other reasons that Mother’s Day can be a day for mourning besides infertility. For those of us who have not lost own our mothers, we may forget that some people’s mothers have passed on.

So, as you set off this weekend to do whatever it is that you plan to do (which for some may be to stay home for some peace and quiet), please be mindful of the fact that there are people around you who are grieving for one reason or another.

Whether you are consciously aware of it or not, if you do not struggle with infertility yourself you more than likely know someone who does. Again, you may also know someone whose mother has passed on.

So, this Mother’s Day weekend… please take a moment to think of those who are mourning. If you know someone who could use support, let them know you’re there for them and follow their lead on what you can do to be supportive.

Thank you.

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

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May 7, 2010   7 Comments

Riverdance Ruined?

In my last post, I mentioned wanting to write a post with an example of how fragrance can really impact people in the vicinity of the individual wearing fragrance. Here is just one story of how fragrance took a special, long-anticipated event and turned it into a stressful, tension-laced situation.

For weeks and weeks, we had looked forward to seeing the Riverdance Farewell Tour. Tickets for such an event are not exactly inexpensive and this was an uncharacteristic splurge that we took after seeing a Riverdance show in 2000 that was spectacular! For those who may not be familiar with it, here is a sample of their magic:

As you can imagine, I did not want to miss a moment of the show. Everything was going along swimmingly at first. We had seats on the left aisle. (Due to nerve damage to my leg related to my last surgery where two nerves were cut, anytime I go to a theater I need a left aisle seat). The bonus of having a left seat was that there was a wide aisle between my seat and the section left of me. Our seats were in the back of the balcony. So, there were no worries about fragrances behind me. I was safe on my right with fragrance-free loved ones there. The place was nearly packed (probably an official sell-out). However, the two seats directly in front of me were empty. I was happy as a clam. To sit in a theater like that and not have any fragrances nearby is a near-miracle.

The show was a matinee. It started at 2:00 pm. I had 28 minutes of pure bliss. Then it happened. In my peripheral vision, I noticed a flashlight. An usher was escorting two women to their seats. Can you guess where they were? If you guessed the two seats in front of me, you’re right. (Sorry but I don’t have a prize for those who guessed right). I swear to you on my life that both of these women must have spent the 28 minutes they were late coating themselves in fragrances. I am not even kidding.

So, here is the thing. I have lived with multiple chemical sensitivity (MCS) since 1992. That means I have been dealing with MCS four years longer than I have known my husband. So, I know what I can handle and what I can’t and it was very quickly evident that I could definitely not handle sitting behind these two human perfume factories!

My dear husband is wonderful and supportive about my many chronic illnesses. My dear husband is also the type of person who does NOT like to make a commotion in a crowded theater. To be clear, I don’t like to do so either! However, since my breathing trouble set in shortly after these women arrived and since that was quickly followed by profound dizziness, I knew I had to bail.

By the way, who shows up to a not-inexpensive show like that 28 minutes late, anyway? Seriously, I thought I was in the clear!

Anyway, my husband is not one to switch seats mid-performance. That’s just the way it is. So, when my dizziness morphed into starting to lose my vision partially (i.e. I was about to faint), I matter-of-factly informed him that I was going to find an usher because I had no choice but to move. I was saddened (but not surprised) that he stayed put.

I found an usher who was incredibly helpful and directed me to an area with some open seats. This was actually closer to the stage, had a slightly better view, and there were no fragrances nearby. In the time that it took to talk to the usher, I missed part of the show. I was very disappointed to miss any of the show but I did what I had to do.

Shortly after moving, it was intermission time. I made sure Hubby knew where the new seats were and encouraged him to move also. He stayed put. I wasn’t going to argue about it. I did what I had to do.

So, back to the post title. Was Riverdance ruined? No. Despite missing part of the show, the commotion of switching seats, the trauma of inhaling that unbelievably strong perfume, and the tension all this caused with Hubby… it’s pretty hard to literally RUIN a show as wonderful as Riverdance.

Do I wish the fragrance incident hadn’t happened? Of course. Do I wish theaters like that were fragrance-free? Absolutely!

However, I did the best I could to appreciate what I did see (the vast majority of it) and make peace with the fact that the time I missed was totally out of my control.

My dream is that someday fragrances (so many of which contain carcinogens, neurotoxins, and/or endocrine disruptors) will no longer be allowed in such public places. It is not healthy for anyone to inhale toxic fragrances. While my multiple chemical sensitivity (MCS) may make me more sensitive to it (than the average person) in an obvious, short-term way…


There IS good news!

My wish is that there will continue to be breakthrough success stories like those below and that the tides will keep turning in the right direction (as they already are now). My primary care physician’s office instituted a fragrance-free policy for employees BEFORE the CDC ruling you’ll see listed below. So, awareness IS increasing!

US Centers for Disease Control and Prevention issues indoor air quality policy for all CDC offices nationwide
. This post talks of a huge victory! The Centers for Disease Control issued a policy making their office space fragrance-free (and more). This sets a precedent for medical offices and hospitals to follow suit. This post is courtesy of Susie Collins at The Canary Report. Thank you to Harry B Clark for obtaining the documents.

Workplace Perfume Precedent: This CBS video is courtesy of Jasmine at Jasmine’s Cove.

April 30, 2010: New ADA Guidelines for Fragrance Sensitivity (Another victory! This one capitalizes on the Susan McBride case mentioned above). This link is courtesy of Harry B Clark.

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

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May 6, 2010   20 Comments

Multiple Chemical Sensitivity Awareness

The last post ended with a reference to canaries. If you have not yet seen that post, just click here: 5-4-3-2….

In any event, here is where we left off previously… with a canary:

While some reading this are familiar with this term (canary) used so often within the multiple chemical sensitivity community, others may not be. Rather than re-invent the wheel, I’d like to refer readers to the link below for both a definition of multiple chemical sensitivity and an explanation of the origin of the canary term:

What is MCS? What is a “canary”?

My multiple chemical sensitivity (MCS) was diagnosed in 1992. It affects me every single day of my life. While readers of my blog may not hear me talk as much about multiple chemical sensitivity as, say, endometriosis… this does not reflect MCS as being any less a part of my life than other conditions such as endometriosis and fibromyalgia.

MCS affects where I can go, which doctors I can see, whether I can go to certain events, what household cleaning products I use, which health and beauty care products I can use, and who I can be around. Heck, it affects where I can go to get a safe haircut. (Most recently, this has been my own kitchen with my dear husband at the hair-cutting shears). It can result in tension between me and my own loved ones. No amount of explanation on my part about the toxins contained in certain products, their effects (not just on me but on the person using/wearing them), and the seriousness of reactions seems to be truly understood by many people and it is incredibly frustrating. It is frustrating beyond words, actually.

Some of the many MCS symptoms I have experienced include (but are not limited to): difficulty breathing, dizziness, nausea, excruciating headache, cognitive disturbances (foggy thinking), loss of balance, and fainting to name a few.

Triggers for my MCS symptoms can range from new carpets (famously tied to many fainting incidents for me), perfumes, colognes, all sorts of fragranced products, “air fresheners”, pesticides, cigarette smoke (including the residue left on people’s clothes), car/truck exhaust, candles, commercial cleaning products, being near anyone wearing clothes saturated with fabric softeners (as I, unfortunately, was a few days ago), and much more.

Attending an event involving expensive concert tickets can be lovely one moment and a nightmare the next… based on who is nearby and what they’re wearing. (I hope to write an entire post with an example of this sometime this month).

A simple trip to the dentist (one that I picked carefully based on that fact that he “gets” how sensitive I am and bends over backwards to accommodate my needs) requires establishing backup plans for my husband to leave work and pick me up if I determine that I am not safe to drive myself home due to an unforeseen reaction.

I rarely venture to the grocery story because the detergent aisle alone is such a trigger for me that stepping foot in the building can be a risky proposition. Thankfully, I have a wonderful husband who does the vast majority of the shopping.

I am one of the lucky ones in that I am not housebound by MCS. Yes, I may have to pick and choose my outings with care. However, my heart goes out to those MCS patients who no longer have that option. I am definitely more sensitive now than when I was first diagnosed in 1992. So, I can’t help but be concerned about what the future holds for me. Hearing the stories of those who are more sensitive than I am now is daunting. Many with MCS struggle to secure safe housing. This is a real and serious problem that affects large numbers of people.

The toxins contained in so many modern-day fragrances (“air fresheners” are so ubiquitous that nearly every public ladies’ room has one spraying the room) can make people really sick. I know because I’m one of them. This is a really seriously problem for me since I have interstitial cystitis too!

Perfumes which lack ingredient lists disclosing the toxins within are not healthy for ANYONE. Let me repeat that. Many of the very same products that cause short-term, severe reactions for MCS patients are NOT HEALTHY FOR ANYONE.

For more information about this, please see below:

Experts say everyone is affected by chemical sensitivity

Curious as to whether products you use are safe? Below is a link to the Environmental Working Group’s awesome SKIN DEEP database which I have had listed in my blogroll for almost two years now.

It first came to my attention when a local endometriosis support group members emailed me the link. She had used it to search for sunscreens that do not contain endocrine disruptors. This site is a wealth of information for all. No matter what state your health is in, this site can help you make the safest choices for everything from shampoo to soap to chemical-free hair coloring… and much more. I can’t recommend it highly enough.


If you visit the link above and do a search on a product you currently use, you may be stunned to discover it contains anything from carcinogens to neurotoxins to endocrine disruptors. If you are fortunate to be relatively healthy now, using this database to check your products could actually help you avoid trouble. If you are already chemically sensitive, this site can be a wonderful tool for checking products out. You might be amazed at what you find!

For more information on multiple chemical sensitivity, I highly encourage you to check out The Canary Report. It is brimming with information and support. Susie Collins has done a superb job of creating a community where people engage in mutual support, information-sharing, and education regarding multiple chemical sensitivity.

Whether you have MCS, a loved one has it, or whether you have never even so much as heard of it, I urge you to take a moment during Multiple Chemical Sensitivity Awareness Month to stop over to The Canary Report and take a peek. Thank you!

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

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May 3, 2010   10 Comments

Facebook Fertility Fallout

There is a space on the Internet where you will not ever find baby pictures or ultrasound pictures. That space is this blog. However, I will forewarn readers that today I am going to talk about such pictures. My intent is not to bring up what is a very sore subject for many for no reason… but to increase awareness about this phenomenon I call “Facebook Fertility Fallout”.

If you are struggling with infertility, you may (like so many people I know) find it difficult to be online sometimes due to the ubiquity of baby pictures and ultrasound pictures. The mother (pun intended) of all sites for such pictures seems to be Facebook.

Several times a week, friends contact me because they have just accidentally encountered baby or ultrasound pictures online… usually on Facebook. They send me messages explaining that they are in tears after just accidentally coming across pictures that triggered a reaction for them. While such pictures are found various places online (such as on blogs that have converted from infertility blogs to “mommy blogs”), most of these tearful discoveries seem to occur on Facebook. (To be very clear, it is definitely not my place to even dream of suggesting what a formerly infertile person should do with her blog once she is able to conceive. I only bring this up for context).

Sometimes I feel like my infertile friends need a fallout shelter to protect their minds and hearts from encountering these pictures that leave them in tears.

Now, for those of you reading this who are formerly infertile mothers getting ready to send me hate mail lecturing me that you have experienced infertility yourself and you are posting baby pictures on your Facebook avatar to give “hope” to other infertility patients (i.e. if, hypothetically you have Stage IV endometriosis), please save your energy because I already heard that speech. (By the way, such a picture won’t give hope for getting pregnant to a person who has had a hysterectomy, as one of my infertile friends commented when we were discussing the above “hope” comment that was made to me a few days ago). OK. It’s time for full disclosure. That scenario above was not a hypothetical. I actually had a Stage IV endometriosis patient give me this speech about hope the other day. She apparently felt (mistakenly) that I was judging her. All I know is my infertile friends would be upset by this and I have a right not to have baby pictures on my wall. This woman didn’t seem to understand that just as it’s her right to choose to post such pictures, which she views as a sign of hope for other infertile patients, I have the right to decide what to post on my Facebook wall.

Point of clarification:

Obviously, everyone has the right to post any pictures they want (that are allowable in the terms of service) on Facebook. I would never, ever be so arrogant as to think it is my place to dictate what pictures someone should or shouldn’t post on their walls or Facebook avatars. (The same individual referenced above seemed to mistakenly think that I was suggesting such a thing; I was not).

Again, I have a right to decide what pictures to have posted on my Facebook wall. In other words, I cannot prevent someone from randomly posting a comment on my wall that happens to contain a baby picture in the Facebook avatar. Sure, I can delete the comment from my wall after the fact if I am concerned that it might be a trigger for one of my infertile friends. However, I can’t be sure someone won’t post a comment on my wall with such a picture. Since I can’t monitor my Facebook page 24/7, there is always the chance that someone will unexpectedly leave a well-meaning message on my wall that includes a baby picture avatar.

So, if you have a baby picture avatar and I should happen to choose to exchange direct Facebook messages with you rather than exchange Facebook wall messages… it’s nothing personal. That’s just the way I handle it. If you are not comfortable with my method of attempting to prevent my infertile Facebook friends (of which there are many) from getting upset or even crying, then perhaps it’s best for us not to remain Facebook friends. Feel free to unfriend me if you are uncomfortable with communicating via direct messages.

This “Facebook Fertility Fallout” issue keeps cropping up again and again. In an average week, three women will contact me about being upset over baby and/or ultrasound pictures on Facebook. Essentially, the best I can do is listen to their feelings. Depending on the person, I will often suggest the person take a “vacation from Facebook” if that is an option. For some, their Facebook accounts are used for work purposes as well as personal purposes. They may not have the luxury of avoiding Facebook altogether. For those who can though, a “vacation from Facebook” can be helpful. Many of my friends do this occasionally.

The point I am trying to make is this: if you were not aware that these pictures are so upsetting to so many infertility patients before you read this post (and it’s not just my friends who find them upsetting), I just wanted to talk about this issue and try to make people aware and sensitive to it. That does not mean that I am suggesting you should change the way you use Facebook. How you decide to use Facebook is your business.

At the same time, how I use Facebook is my business. So, once this post is complete I will post it on my wall and anytime I encounter the issue (anytime one of my Facebook friends posts pictures on my wall with babies in the avatar), I will direct message them a link to this post. This post is my way of saying, “please don’t take it personally but I am not comfortable posting baby/ultrasound pictures on my wall”.

Again, I am not asking anyone to change their pictures. Do I hope that this post might discourage people from posting such pictures on my wall that I will delete as soon as I come across them? Yes. Should anyone be offended that I am deleting such pictures if they do get posted on my wall? No. If that offends you and we are connected on Facebook, feel free to unfriend me. It’s not that I don’t want to be friends on Facebook. It’s just that I don’t have time to police my wall 24/7. That is why I am writing this post. It is with the hope that it might discourage people from posting such pictures on my wall.

In addition to baby/ultrasound pictures, there are other triggers for my infertile friends that I would like to mention before wrapping up this post. One of my Facebook friends has Stage IV endometriosis that resulted in removal of her fallopian tubes. A couple of days ago, her own sister posted what my friend dubbed a “mom meme” as her Facebook status:

If one’s own sister thinks nothing of posting memes like this, I’m not sure what to even say to comfort the person. As you may imagine, my friend was devastated to see this Facebook status on her own sister’s wall. I was at a loss for how to even comfort her in this situation. I did the best I could but I really didn’t even know what to say.

In closing, my purpose with this post is to take a moment to bring this subject up. Perhaps someone reading this has never stopped to think how upsetting it can be to be an infertility patient who feels, at times, bombarded with baby/ultrasound pictures. Maybe someone who would have posted a “mom meme” will have a greater awareness of the impact it might be having on a friend or loved one.

I thought National Infertility Awareness Week might be a good time to bring this subject up.

I cannot emphasize enough that I am not trying to tell others how to handle their own Facebook profiles or walls. I am not the “Facebook Fertility Fallout” police. As I touched on earlier in the post, someone got angry with me a few days ago for how I choose to manage the messages (images) on my own Facebook wall. I can manage the messages any way I see fit. If anyone cannot understand my perspective, it’s best for us not to be connected on Facebook.

It just makes me so sad that so many of my friends are afraid to even login to Facebook (where they have support people, loved ones, and friends) for fear they will encounter pictures that leave them in tears.

If this post prevents even one of my friends from breaking down into tears over baby/ultrasound pictures, then it will be worthwhile.

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

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April 27, 2010   40 Comments

Infertility Awareness Week (Updated)

Now through May 1, 2010 is National Infertility Awareness Week.

According to RESOLVE:

“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”.

Video is by singer/songwriter Sarah Motes Ashley, who had 6 IVF procedures. Updated: Please note that Ms. Ashley’s site (which Jannie mentioned in a blog comment) does contain pictures that may be triggering for some. I was not aware when I posted this video that her circumstances had changed and just wanted to make infertile readers aware that seeking out her blog may present pictures you are not up to seeing at this time.

Interested in taking action to support patients with infertility? Check out the “Become an Advocate” page on RESOLVE’s newly revamped website by clicking the yellow badge below. (Readers who have a badge like this on your own blogs, please update the links on your sites to reflect the new web address for RESOLVE’s advocacy work). Thank you!

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

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April 26, 2010   4 Comments

Earth Day 2010

Last year, I read an interesting post about Earth Day written by Robert Redford that stuck in my mind:

Making Every Day Earth Day

This year marks the 40th anniversary of Earth Day.

Here is the Official Earth Day 2010 Campaign site. Check it out for ideas and information:

Earth Day 2010 Campaign Headquarters

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

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April 22, 2010   4 Comments

MCS patient Linda Sepp faces eviction any day now with no safe place to go

Multiple chemical sensitivity (MCS) patient Linda Sepp lives in Toronto, Ontario in Canada. Per the post below, from Susie Collins at The Canary Report, Linda is currently facing eviction. She is extremely ill. She has fibromyalgia as well. More details about Linda’s situation are available in Susie Collins’ post.

If you, or anyone you know, live in the Toronto area or have connections there, perhaps you can help Linda in some way.

Sadly, finding safe housing can be a very real concern for multiple chemical sensitivity patients.

As Susie Collins puts it, “How does a disabled person with acute chemical sensitivity, who’s dependent on government assistance, prepare to move?”

Please read Linda’s story and see if there is anything whatsoever you can do to help her.

>> Linda Sepp faces eviction any day now with no safe place to go <<

Here is a link to Linda’s blog for more information.

I believe the more blog posts, Facebook links, Twitter messages, and word of mouth there are on this situation… the greater the odds that someone with the power to help Linda will step up to the plate or direct her to someone who can help in some way.

Thank you!

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

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April 14, 2010   4 Comments