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Media: Endometriosis Misinformation (Edited)

I am tired of feeling like literally screaming when I read how endometriosis is covered in the media. Yes, I said screaming.

Why do I feel like screaming? It is so very seldom that the topic of endometriosis is presented accurately in the media. The vast majority of the time that an article is written either about endometriosis (or that mentions it in passing), important elements get reported incorrectly. Such dissemination of misinformation hurts the endometriosis community. However, it also hurts everybody. It is a problem that the general public is repeatedly fed misinformation about endometriosis.

In some cases, the misinformation disseminated could increase patients’ chances of incorrectly assuming that symptoms mimicking endometriosis are caused by it… when, in fact, the symptoms might be caused by something else entirely. For example, an ovarian cancer patient misdiagnosed as having endometriosis could lose valuable time to get prompt treatment for her condition. That is why this news article makes me feel like screaming. Rather than educate readers, articles such as this add to the confusion about such universally agreed-upon matters as how endometriosis is diagnosed.

Let me back up a step. What got me so riled up? I received an email last night that prompted this post. Specifically, I received a Google Alert for the topic of “endometriosis”. This email contained multiple hyperlinks to stories in the media that mention endometriosis.

Please note that the quotation below is incorrect and is being mentioned here to draw attention to its inaccuracy. It pains me to even include this quote and I emphasize that I am pulling it directly from the media report I reference in this post.

Quote from The Intelligencer:

“A simple pelvic examination would have quickly pin-pointed the diagnosis, endometriosis”.

THE ABOVE QUOTE IS NOT ACCURATE.

A “simple pelvic examination” is not the method for diagnosing endometriosis.

Astonishingly, in an article entitled The doctors didn’t even examine me! by Dr. Gifford-Jones, the reader is led to believe that a “simple pelvic exam” is how endometriosis is diagnosed.

I posted the following on the site of The Intelligencer in response to this article (on the online Intelligencer story under comments):

As a patient who has lived with endometriosis for 27 years, I feel compelled to point out an inaccuracy in this column. This quote is incorrect:

“A simple pelvic examination would have quickly pin-pointed the diagnosis, endometriosis”.

As per the Endometriosis Association, “Diagnosis is considered uncertain until proven by laparoscopy, a minor surgical procedure done under anesthesia. A laparoscopy usually shows the location, size, and extent of the growths. This helps the doctor and patient make better treatment choices”.

This Intelligencer article came to my attention because it was picked up as a “Google Alert” for the topic of “endometriosis”. (That means many people are being exposed to the inaccurate info included in this article). So, I received an email from Google that linked me here.

The incorrect quote above immediately drew my attention because it is this type of misinformation in the media that has hurt so many endometriosis patients for so many years.

I hope that the Intellenger will print a retraction.

It saddens me that such misinformation is occurring in 2010. The typical endometriosis patient receives a diagnosis an average of 9.9 YEARS after the onset of symptoms.

Finally, in regard to the reference to ovarian cysts, some endometriomas are, in fact, large enough to be detected by ultrasound. However, as stated in the Endometriosis Association quote above (taken directly from their website), “diagnosis is considered uncertain until proven by laparoscopy”.

There are many different types of ovarian cysts. Some are utterly unrelated to endometriosis.

I would certainly hate for an ovarian cancer patient to be misdiagnosed as having endometriosis by a doctor who relied solely on an ultrasound rather than performing a laparoscopy to rule endometriosis in/out as the cause of ovarian cysts. I would also hate for readers of this article to get an incorrect impression about the proper use of ultrasound.

I think this article is irresponsible. Basic fact-checking about endometriosis (such as taking just moments to consult a site like the Endometriosis Association’s) would tell a reporter than it is NOT correct to state that “a simple pelvic exam would have quickly pin-pointed the diagnosis, endometriosis”. This statement is simply untrue.

Doctors can suspect endometriosis without having performed a laparoscopy to validate their suspicions. However, at this time laparoscopy is the definitive means for diagnosis. I find inaccurate medical articles such as this very disturbing.

By the way, if you have not yet signed the Create Endometriosis Awareness & Understanding online petition, it is up to 467 signatures. Anyone who supports endometriosis awareness and understanding can sign. It is not necessary to be an endometriosis patient to sign it. So, please ask others to sign it too.

GoPetition

I know many readers here have endometriosis (or know someone who does). If you are as troubled by the inaccuracy of the article in The Intelligencer as I am, I would encourage you to take just a moment to post a comment on the site of The Intelligencer with your feedback. A log-in is required to post a comment. I set mine up within approximately 60 seconds, give or take. All you need is to pick a screen name, a password, and to click on the confirmation link that Sun Media will instantly email you once you’ve registered. (I added an avatar and a link to my blog so readers of that article would have access to a site that does not spread misinformation about endometriosis, if they wish to read further about endometriosis but this is totally optional). Then, once you’re logged in to comment on The Intelligencer you will be able to provide your feedback to the article.

Every time the media reports misinformation about endometriosis, I make an effort to speak up and make the source media outlet aware of the misinformation. I believe it is imperative for people to speak up when they see such misinformation being reported in the media. The only way there will ever be improvement in how endometriosis is covered in the media is if people speak up when they see errors. I have read inaccurate reports related to endometriosis too many times. I can’t stand by and watch such misinformation get disseminated in the media and do nothing… say nothing. I feel I have an obligation to speak up when I see incorrect information about endometriosis in the media. If no one speaks up, the media will surely keep churning out articles like this that mislead readers.

I want the media to hit a bulls-eye when they write about endometriosis. I expect articles to be fact-checked before they are published. Am I expected too much for wanting the media to present FACTS about endometriosis?

Bear in mind that this article was distributed on a Google Alert for the topic “endometriosis”. So, many people will see this inaccurate article. The more people speak up about the incorrect information in this article, the better for all endometriosis patients. Frankly, each time misinformation on endometriosis is disseminated in the media it hurts the endometriosis community and potentially hurts all endometriosis patients. I personally believe this article warrants a retraction. If you agree, please contact The Intelligencer to request one. Contact information for The Intellenger/Sun Media is contained in the article hyperlink above.

Please join me in speaking up for endometriosis patients everywhere regarding endometriosis misinformation in the media. Please read the article above and consider leaving a comment on that site regarding the misinformation presented in the article. It takes moments to share your feedback.

Suffice it to say that I hope we can band together to spread FACTS about endometriosis so that societal intelligence about this very widespread condition can be increased. The more awareness we get for the FACTS about endometriosis, the more intelligent society will be about this condition… which experts estimate affects 89 million patients (and that is a conservative figure) worldwide.

EDITED 2/5/2010 at 6:03 pm:

Endochick mentioned writing a Letter to the Editor in addition to leaving a comment on the site for The Intelligencer. I just did so. Here is a quick summary of how I did it. It’s fast and easy.

I just sent my letter to the editor requesting a retraction of the article. I took the comment I had already posted, modified it slightly, clicked “Contact Us” at the bottom of the screen, clicked “Editorial”. This took me to a screen for contacting the editorial department. I sent my letter using this form to:

ATTN: Editor of The Intelligencer

The whole process probably took me 1-2 minutes. Again, I clicked “contact us” and then “editorial” from the bottom of the screen (from the link to the article that I included in this post).

Update from 2/6/2010 at 5:34 pm:

Astonishingly, The Intelligencer has closed comments on the article discussed in this post. Interestingly enough, I know of multiple people yesterday who either submitted comments (that went into moderation but never got published) OR attempted to submit comments but had some sort of difficulty doing so. So, four outraged endometriosis patients posted comments to that erroneous article and then The Intelligencer decided to close comments without processing ones that were submitted early yesterday? Wow!

If you haven’t written a letter to the editor, I encourage you to do so. Directions for doing so are above.

Edited again 2/7/2010 at 12:33 pm:

Following up on this link provided by Aviva (Canada Free Press: Bio on Dr. Gifford-Jones – aka Dr. Ken Walker), I Googled the author of the article and found this write-up:

Editor Desk – W. Gifford-Jones: Soldier with a stethoscope

If you read that last link, you’ll learn many things.

The one that got my attention the most is that he is a GYNECOLOGIST!

This second link says, among other things:

“As Gifford-Jones, he’s Canada’s best-known medical journalist. As Dr. Ken Walker, he’s a popular Toronto-based gynecologist”.

That’s right. The author of the article containing misinformation about endometriosis is a GYN!

Now, for those of you who have steam coming out of your ears right about now, there is good news. There is an email address listed for W. Gifford-Jones (aka Dr. Ken Walker):

letters@canadafreepress.com

I urge you to contact Dr. Gifford-Jones (aka Dr. Ken Walker) and let him know what you thought about his article (referenced in this post). The newspaper closed comments on the article. The four that made it through before comments were closed (mine included) were all from outraged endometriosis patients. (You can view the comments that did post beneath the article itself. See the article link earlier in the post).

I know of several people who have written letters to the editor and I know of no one who has received a response. Comments had been submitted to the article that went into moderation (while comments were still open) and were never published before the paper closed the article to comments.

Perhaps by contacting the author directly, we can let him know our concerns about the wording of the article. It is truly astonishing to me that a gynecologist wrote a piece claiming that a “simple pelvic exam” can diagnose endometriosis… among other flaws in the article. The way ultrasound was referenced in the article was misleading too.


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


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Reading: Media: Endometriosis Misinformation (Edited)

33 comments

1 AmandaNo Gravatar { 02.05.10 at 3:43 pm }

Done and done… I have left a comment on the website – thanks for bringing this to my attention!
.-= Amanda´s last blog ..Headaches and things =-.

2 JeanneNo Gravatar { 02.05.10 at 3:55 pm }

Amanda,

Thank you for checking this media story out and stopping by here. I just looked at the site for The Intelligencer and on my side the only comment showing up for that story right now is mine. Perhaps it’s a timing issue and will show up on my end shortly? In any event, thank you for taking the time to weigh in on this. I am extremely sick and tired of media misinformation about endometriosis.

Jeanne

3 KerryNo Gravatar { 02.05.10 at 3:59 pm }

Jeanne–Glad you are bringing screaming attention to such an absurd statement. Endometriosis is diagnosed through surgery (and I imagine scans now–I had the surgery so many years ago)…It seems now a days that if a woman has severe cramps, an endometriosis diagnosis may be given or self-given.

A disease that can take one’s fertility or be misdiagnosed when cancer is causing similar symptoms can not afford misinformation going out to the public. Kerry

4 JeanneNo Gravatar { 02.05.10 at 4:16 pm }

Kerry,

Thank you. Laparoscopy is still considered the definitive method for diagnosing endometriosis. I won’t even expend energy dissecting what scans or ultrasound can or can’t do because the bottom line is that without a laparoscopy, a definitive endometriosis diagnosis cannot be made. (There have been periods of “buzz” about other means of diagnosis in recent months but laparoscopy remains, to date, the definitive means for diagnosing endo).

I agree with you that some doctors and patients jump to conclusions and assume endometriosis is the culprit when various symptom occur… which may or may not be accurate!

Self-diagnosis of endometriosis is impossible since one cannot give oneself a laparoscopy. One can suspect endometriosis but suspicions can be wrong. Many months ago, Endochick blogged about her sister who thought she had endometriosis… which I then reprinted on my blog. (Endochick and her mom both have endo). As it turns out, Endochick’s sister actually had cervical cancer!

You are quite correct that a disease that can result in infertility or that can be misdiagnosed for cancer must be properly diagnosed. Any misinformation in the media about HOW endometriosis is diagnosed is a huge disservice to the public!!

I am hoping that others will join me in commenting on The Intelligencer’s site.

Jeanne

5 JulieNo Gravatar { 02.05.10 at 5:43 pm }

Jeanne

Have tried to leave a comment on website but for some reason it will not accept my e-mail address even when i ask to reset it.

Julie x

6 JeanneNo Gravatar { 02.05.10 at 5:57 pm }

Julie,

Thank you for attempting to comment on The Intelligencer. You said it won’t accept your email address. Does it give you an error message? When you say you tried to “reset it”, what do you mean? Do you mean you tried again with a different email address? Or was it a password issue?

I know that Amanda said she left a comment and got a message that it would need to be approved.

When I left a comment last night, it posted immediately.

It sounded like Amanda’s comment went into comments moderation, though. It sounds like you didn’t get as far as Amanda did with leaving a comment.

I don’t understand why it would reject a valid email address. Maybe if you have a specific error message, we can figure out why it’s not working. Maybe you meant that you reset your password??

For me, I picked a screen name and password and I inputted my email address. Then, Sun Media emailed me immediately with a link. I clicked that link to confirm. Then, I was able to log-in on The Intelligencer to submit my comment underneath the article.

Let me know. I’m sure we can sort it out. ;)

Thanks!

Jeanne
xo

7 EndochickNo Gravatar { 02.05.10 at 5:59 pm }

Jeanne –

People shouldn’t stop at leaving a comment on the site, they should pull together a letter to the sites editor explaining how perturbed they are by the blatant disregard of medical fact this article demonstrates.
.-= Endochick´s last blog ..Speak Up! =-.

8 PoobaNo Gravatar { 02.05.10 at 6:05 pm }

I’m headin over right now!!!
.-= Pooba´s last blog ..I’m Trying To Be Like Jesus =-.

9 JeanneNo Gravatar { 02.05.10 at 6:36 pm }

Endochick:

I agree with you that leaving a comment on the site is just a starting point. In order to have a chance at a retraction of this flawed article, the editor really does need to be contacted. You are correct that such a blatant disregard of medical fact does warrant a letter to the editor. Unfortunately, of the people I’m aware of who have already tried to simply leave a comment on that site (besides me)… Amanda’s comment is stuck in moderation (it gave her a message indicating her comments needed to be approved) and Julie had trouble getting registered. I’m not sure why comments moderation is set up since my comment posted immediately last night. Please keep me posted on how you make out with contacting The Intelligencer. I don’t think we should let a couple of setbacks stop us from flooding The Intelligencer with as much feedback as possible regarding this article.

Pooba:

Thank you very much! I appreciate you taking the time to comment to The Intelligencer about this inaccuracy when you don’t even have endometriosis!! ;)

Jeanne

10 JeanneNo Gravatar { 02.05.10 at 6:57 pm }

Endochick:

I just sent my letter to the editor requesting a retraction of the article. I took the comment I had already posted, modified it slightly, clicked “Contact Us” at the bottom of the screen, clicked “Editorial”. This took me to a screen for contacting the editorial department. I sent my letter using this form to:

ATTN: Editor of The Intelligencer

The whole process probably took me 1-2 minutes. Again, I clicked “contact us” and then “editorial” from the bottom of the screen (from the link to the article that I included in this post).

Jeanne

11 PoobaNo Gravatar { 02.05.10 at 6:59 pm }

I’m having an issue leaving a comment over there too, but I’ll keep tryin!
.-= Pooba´s last blog ..I’m Trying To Be Like Jesus =-.

12 JeanneNo Gravatar { 02.05.10 at 7:15 pm }

Pooba,

Sorry you’re having an issue. Please do keep trying. Is it giving you an error message? I just wrote a letter to the editor on that same site and it worked fine. Is it letting you register to be able to comment or is that where you’re getting stuck?

Thank you so much!!!

Jeanne

13 StephNo Gravatar { 02.05.10 at 9:34 pm }

Jeanne, thank you so much for posting this. I have added my comments to that news article, and I sent an email to the editorial department to complain.

EVERY month is Endometriosis Awareness month!!
.-= Steph´s last blog ..Curcumin arrests endometriosis by downregulation of matrix metalloproteinase-9 activity. =-.

14 JeanneNo Gravatar { 02.06.10 at 12:35 am }

Steph,

Thank you for posting a comment on the site of The Intelligencer and writing to their editorial department. The comment you posted there was SPOT ON. So far, there are four comments posted in response to that article (counting yours and mine) and they are ALL spot on.

I know of one blogger who submitted a comment many hours ago and I still don’t see her comment posted. When I commented last night, it posted immediately. I just submitted a follow-up comment that went into “review” (some type of comments moderation). Hopefully, there are many more comments in the queue that will be published on that site soon.

I know of a couple of bloggers who tried to post comments earlier today and had trouble for one reason or another.

Everyone whose comment has been posted thus far was ‘on the same page’.

All four comments currently visible are from outraged endometriosis patients.

Also, there is an option to select “thumbs up” under each comment. So, there is a method for “voting” for comments there.

Thank you for sharing the link on Facebook too. The more people are made aware of this, the better!!

Yes, absolutely… EVERY month is Endometriosis Awareness Month!! We are certainly not waiting until March to speak up about this outrageous and potentially dangerous article!

Thanks, Steph!

Jeanne

15 AllisonNo Gravatar { 02.07.10 at 12:39 pm }

Endo myths drive me MAD!!! I will also go leave a comment!
.-= Allison´s last blog ..Weird Weekend =-.

16 AllisonNo Gravatar { 02.07.10 at 12:40 pm }

damn, just read your last update. Guess I’ll be writing a letter to the editor!!!!
.-= Allison´s last blog ..Weird Weekend =-.

17 JeanneNo Gravatar { 02.07.10 at 12:47 pm }

Allison,

They CLOSED the comments but please do write a letter to the editor! I just Googled the author and he is a GYN!!!!!!!!!

Jeanne

18 JeanneNo Gravatar { 02.07.10 at 12:51 pm }

Allison,

Yes, it’s not hard to do. It’s no more complicated than leaving a comment. I had registered to leave a comment prior to sending a letter. So, I’m not certain but I am guessing that you still need to register on the site before you can write to the editor. I just Googled the article’s author and will be posting the link I found in just a minute. I cannot BELIEVE the author of that article is a GYN!! Also, check out the Facebook thread on this situation where we discuss other options besides a letter to the editor. Look for a thread with Aviva’s comments in it. She used to work for Associated Press and posted some suggestions.

Jeanne

19 JeanneNo Gravatar { 02.07.10 at 1:15 pm }

Readers,

Following up on this link provided by Aviva (Canada Free Press: Bio on Dr. Gifford-Jones – aka Dr. Ken Walker), I Googled him and found this write-up:

Editor Desk – W. Gifford-Jones: Soldier with a stethoscope

If you read that last link, you’ll learn many things. The one that got my attention the most is that he is a gynecologist! This second link says, among other things:

“As Gifford-Jones, he’s Canada’s best-known medical journalist. As Dr. Ken Walker, he’s a popular Toronto-based gynecologist”.

That’s right. The author of the article containing misinformation about endometriosis is a GYN!

Now, for those of you who have steam coming out of your ears right about now, there is good news. There is an email address listed for W. Gifford-Jones (aka Dr. Ken Walker):

letters@canadafreepress.com

I urge you to contact Dr. Gifford-Jones (aka Dr. Ken Walker) and let him know what you thought about his article referenced in this post.

In addition to posting this newly found information here, I will update the post itself a third time with it. It is truly astonishing to me that a gynecologist wrote that piece claiming that a “simple pelvic exam” can diagnose endometriosis… among other flaws in the article. The confusion caused by how ultrasound was referenced in the article was troubling too.

Jeanne

20 EndochickNo Gravatar { 02.07.10 at 1:20 pm }

OK – I’m going to have to post about this guy! How can a Dr. with so many publishing credits to his name be so misinformed? He’s a GYN for peets sake?!?!

21 JeanneNo Gravatar { 02.07.10 at 1:30 pm }

Endochick,

Sadly, nearly every case I have ever seen of endometriosis misinformation in the media has somehow stemmed back to one or more doctors spreading misinformation through the media. This case is no exception.

It is NO WONDER that so much endometriosis misinformation persists in the media if a doctor who has gone to prominent schools, worked as syndicated columnist, and published books plus practiced as a gynecologist can get such a story so very wrong. This is highly alarming!

Jeanne

22 NicoleNo Gravatar { 02.07.10 at 8:02 pm }

Thank you for bringing this to the attention of not only endo sufferers, but the general public as well. I cannot believe how enraging this is! Best wishes to you!
.-= Nicole´s last blog ..oDDs ‘n eNDs =-.

23 JeanneNo Gravatar { 02.07.10 at 8:16 pm }

Nicole,

Welcome!! Ironically enough, I just discovered your blog today too… but haven’t had a chance to post a comment yet because I have been so busy (with this post in particular) that I haven’t been able to “breathe” today.

Thank you for stopping by with your feedback on this alarming story. I have lived with endometriosis for 27 years now (the first 10 of which were undiagnosed) and I have to say that I am just sick and tired of media misinformation such as this regarding endometriosis.

I don’t know if you’ve signed the petition that I mentioned in the post but this “news” article is precisely the type of botched coverage on endo that motivated me to set the petition up in the first place.

Words cannot express how very frustrated I am that this type of story gets printed again and again and again. It really is no wonder that such stories get published when doctors who are considered by some to be “experts” are spreading misinformation!

It’s bad for the endometriosis community as a whole, it’s bad for individual endo patients, and it’s bad for the general public too. It certainly is a huge disservice to endometriosis patients. I agree with you that this situation is enraging. If you could have been a fly on the wall today when I discovered that the author is a GYN, you would have seen quite a sight!

Thank you so much, Nicole!

Jeanne

24 Endometriosis Misinformation in the Media « Endometriosis: the silent life sentence { 02.08.10 at 12:16 am }

[...] of writing a long post explaining the current situation I will direct you to Chronichealing.com. Her post Media: Endometriosis Misinformation (Edited) will be able to fully tell you more than I [...]

25 EndochickNo Gravatar { 02.08.10 at 12:20 am }

Jeanne – just letting you know I wrote a post directing readers to this post.
.-= Endochick´s last blog ..Endometriosis Misinformation in the Media =-.

26 JeanneNo Gravatar { 02.08.10 at 1:01 am }

Endochick:

Thank you very much for posting about this important topic… The more people write letters to the editor, the better!

Readers:

I have not yet had an opportunity to email the author directly as I have been very busy communicating with endometriosis patients about this matter and getting the word out on Facebook. I do plan to write the author directly. If anyone reading this has contacted either the newspaper Editor or the article author, please let me know so that I can try to track approximately how many people are writing in. If you have not yet signed the endometriosis petition mentioned in this post, please do so at your earliest convenience as I have an idea for how I may put it to use shortly. Also, if any readers who use Twitter would be so kind as to take the “Retweet This” option at the bottom of this post, I would greatly appreciate it. That will help get this post circulated so that more people can be made aware of this situation.

Thank you!

~~~

Jeanne

27 Endometriosis and Media — ChronicHealing.com { 02.08.10 at 11:47 pm }

[...] >>> Media: Endometriosis Misinformation (Edited) [...]

28 Endometriosis Advocacy and the Media — ChronicHealing.com { 02.10.10 at 5:46 pm }

[...] the editor recently sent to The Intelligencer (regarding the article discussed in these prior posts Media: Endometriosis Misinformation (Edited) and Endometriosis and Media) was published today. [...]

29 Jannie FunsterNo Gravatar { 02.10.10 at 7:04 pm }

Arrrrg!!!

Consider me in on a letter to the UN-Intelligent-er.

Geez, Louise. Closing comments — what chicken crap.

30 JeanneNo Gravatar { 02.10.10 at 8:11 pm }

Jannie,

Oh, you always are the Funster, aren’t you? ;) I know how you like to play with words.

Yes, I thought it was interesting that the comments were closed so soon after the article was published, with a mere four comments posted, and with me knowing (just from people I had spoken with) that there were people who had submitted comments that went into limbo and never did get posted.

However, I will give them huge points for printing the letter to the editor mentioned in today’s post,
Endometriosis Advocacy and the media!

At least they actually listened to the feedback they were inundated with from endometriosis patients and did something about it. I give them huge points (when, after all, the correction was very warranted!) simply because my own personal experience with the media in situations like this is that endometriosis patients’ voices are typically ignored.

So, while I was very upset with the initial article, I am thrilled that they printed a letter to the editor that points out the initial article’s errors.

It is wonderful to see that people CAN do something about endometriosis misinformation in the media… especially if they band together!

Jeanne

31 Terribly Tired Today — ChronicHealing.com { 02.24.10 at 3:26 pm }

[...] HERE, HERE, and HERE [...]

32 Endometriosis Advocacy and the Media (Re-post) — ChronicHealing.com { 03.08.10 at 4:57 pm }

[...] the editor recently sent to The Intelligencer (regarding the article discussed in these prior posts Media: Endometriosis Misinformation (Edited) and Endometriosis and Media) was published today. [...]

33 JeanneNo Gravatar { 08.01.13 at 2:02 am }

This is just a quick message for anyone who has posted recent comments on my blog. I have been stuck offline (for too many reasons to begin to describe!) and I’ve never been so behind on moderating blog comments – but I will reply to each comment just as soon as I am able. Thank you very much for your patience… especially anyone who is new to my blog. I promise I’m not usually so slow at posting and replying to comments. Thanks for your understanding!

Jeanne

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