Finally! I am posting my first vlog, as I have wanted to do for months. I'll be very anxious to hear your feedback. Some of you may ask, what's a vlog? Here is a description.
My first vlog entry talks of my intense desire to get the facts about endometriosis featured in mainstream media magazines. I'd like to make the hundreds of voices on our Create Endometriosis Awareness and Understanding petition heard!
Video is copyright © 2009 Jeanne's Endo Blog. All rights reserved.
As promised, here is the contact info for writing to request endometriosis coverage:
Mariela Azcuy
Senior Associate Director of PR
Ladies' Home Journal, More and Siempre Mujer Magazines
Meredith Corp.
125 Park Ave, 17th Floor
NYC 10017
Please first join me in THANKING Ms. Azcuy for sharing the February 2009 More magazine article, "Ill In A Day's Work"!! It is phenomenal!!
In addition to thanking Ms. Azcuy for sharing the amazing article linked above (make sure you tab through and catch all 7 screens for this article), I wanted to request that one or more of her magazines consider printing a story on endometriosis.
With 89 MILLION women and girls with endo worldwide, we need to get the facts about endo out to the public, to undiagnosed patients in need of guidance on how to get diagnosed, and to patients to let them know they are NOT alone!
PLEASE HELP CREATE ENDOMETRIOSIS AWARENESS & UNDERSTANDING BY DOING THE FOLLOWING:
(1) Sign the awareness petition linked above. Ask your friends and loved ones to sign it too. ANYONE wishing to support endo patients may sign it. The more people sign, the better our odds at getting endo featured. Write to Ms. Azcuy requesting media print coverage of endometriosis. Time is of the essence!
(2) If you have a blog, please blog about this topic and link back to this blog post!
(3) If you don't have a blog, please be persistent when asking friends and loved ones to sign the petition. (The petition has been emailed to Ms. Azcuy already but let's get more names). Also, you don't need a blog to write to her asking for endo coverage! Frankly, this could be our chance to finally put that petition to use. Too many women are suffering in silence.
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89 MILLION women & girls worldwide with endo... the numbers are just staggering)!
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Thank you for your support! Let me know what you think of my first vlog, please!!
This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.
43 comments:
You're so quiet! Very well done though. Better than my pitiful attempts at videos that I have posted in the past!
So great to see you Jeanne!
And of course, I will help by writing "all of the above," about getting some coverage.
Jannie
xo
P.S. I am inspired to get my first vlog up too! Maybe you will see me on my site soon.
Enjoyed your vlog, Jeanne. I'm writing my letter now. And will make a post on my blog about this, as well. It will link back to you. :-)
Great job with your first vlog. And thank you for posting the article.
Jeanne,
Your vlog is informative, inspiring, and hopeful.
I signed your petition!
Joan
Congrats on your first vlog post. I've been considering doing something similar but haven't found the "guts" to do it yet.
I hope you get an article in a national mag on endo!
Mimi,
Ha ha! My husband will get a chuckle out of that! I've been called many things but quiet isn't one of them! :)
I'm glad you liked it. I didn't see your videos but I'm sure they were not pitiful. Nothing you do is.
I was glad to have my husband act as "cinematographer" so I wouldn't have to mess with the tripod. It was nice to have his help... When I held up the magazine, he pointed up because I was holding it a little low. :)
Jeanne
Hi Jannie!
Thanks for helping out with writing to get endo the coverage it deserves!
Jeanne
xo
P.S. Cool! I can't wait to see your vlog! With how hysterical you are in print, I can only imagine how hilarious you'll be on video! That's great! Oh, in addition to fun stuff on that Funster blog of yours, I'd LOVE too see/hear you singing! Why not post a vlog playing one of your songs on the guitar? :)
Joan,
Thank you for the kind comments. I appreciate your support with the endometriosis awareness and understanding petition!
Jeanne
Endochick,
I'm glad you liked the vlog. Thank you for writing the letter! I'd love it if you could shoot me a copy of it. I look forward to reading your blog post too!
I think cross-referencing our posts will only help the endo cause... As you and I have noticed in the past, cross-linking really helps! :)
Jeanne
Jasmine,
Thank you for supporting me on my first venture vlogging! Wasn't that More magazine article great!?
Take care,
Jeanne
Kelly,
Thank you! It took me awhile to work up to it myself. :)
With all of your experiences with podcasts, I'll bet this will come naturally to you, when you decide you're ready.
I'm actually going in "reverse order"... posting this vlog before trying podcasts. Do you use blogtalkradio for your radio shows? Do they charge for that if a show has callers dialing in with questions??
With video: just look at it this way. If you make a mistake, you can always do another take. Nothing to be nervous about, really. :) (Okay... maybe a little nervousness is to be expected).
I hope we get an article in a national mag on endo too!
Thanks!
Jeanne
Congratulation Jeanne. Your vlog is so well done. I believe a star is born. You looked very comfortable in front of the camera.
Thanks for the magazine article. It is as you said; "phenomenal."
You have given me a lot of home work this week. I am up to the task.
Take care of yourself!
Mckay k,
Thank you. I'm glad you liked it. You crack me up. :)
I just love that article!
Enjoy your "homework" but rest as needed! :)
Take care,
Jeanne
Excellent Vlog Jeanne - I am inspired by your efforts - Great Job.
Our daughter was thought to have endo for the past four years, we had a doctor who didn't take it very serious at first therefore we moved onto another doctor who completed extensive tests, finding her not to have this illness - unfortunately it was left unexplained however not for lack of trying.
Great article Jeanne - look forward to more of your posts -keep twittering and keep up the great work!
Homeopath,
Thanks for stopping by!! I use homeopathics and find them very helpful! I just took a peek at your blog and look forward to checking it out more thoroughly. I added myself to your blog as a "follower". I'm glad you stopped by! Homeopathy has really helped me a great deal!!
Jeanne
Carl T,
Thanks for stopping by! I looked at your blog. As I have blogged about extensively, music is a huge tool for me in coping with chronic illness and pain. So your blogging about relaxation music was interesting to me.
Also, since it sounded like you found my blog via twitter, I looked there and saw your message about having joined HolisticTwitter.com. I just joined that too!
I'm finding twitter an increasingly helpful resource lately. So, yes, I'll keep twittering. :) I added you on twitter, by the way.
Anyway, thank you for your kind words about my first vlog.
I'm sorry to hear that your daughter is ill! Sadly, too many doctors don't take patients seriously in these matters, just as you've described was the case for your daughter.
Good for you for switching doctors to get a proper diagnosis and appropriate treatment for your daughter! It's surprising how often switching doctors like this is necessary to get to the bottom of things.
If this second doctor can't find the correct diagnosis, don't be afraid to have her get a 3rd opinion!
I have heard too many sad stories over the years of women and girls going to 7, 8 or 9 doctors before finally getting a diagnosis.
If your daughter still hasn't been diagnosed, I would encourage you to find another doctor, if needed, to get her some answers. There are many illnesses that can "mimic" endo!
Check out this blog post for some of the many conditions that can present as if they are endo -- when they are not:
http://endochick.wordpress.com/2008/11/13/dancing-with-the-stars-endometriosis/
The excellent post above was written by Endochick. Even though your daughter has been told she does not have endo, I would urge you to read Endochick's post above. It is a very comprehensive look at other illnesses that have overlapping symptoms with endo!
Another thing to consider is this... If your daughter had a laparoscopic surgery and was told she does not have endo, it is POSSIBLE that the surgeon missed endo during the surgery. (I'm assuming your daughter had a laparoscopy if the doctor has told her it's not endo??)
With endo, finding a highly skilled surgeon who treats a lot of endo is key!
I have met women who had a laparoscopy by a doctor who was not highly familiar with endo, were told they did not have endo, and have gone on to have a different doctor tell them at a later date (following another laparoscopy) that they did have endo!
Endo can be microscopic and doctors can miss it. Just something to think about if she's still suffering without a diagnosis.
Thank you again for your kind words about my blog/vlog!!
Your blog looks very interesting. :)
Thank you for stopping by!
Jeanne
GREAT JOB!!!!
I LOVE IT!
You look SO CUTE!
I'm in love w/ vlogs! Yay!
Such a good job!
Were you nervous? You didn't seem nervous. I get nervous for mine...lol!
Anyways, very useful information. I will write my letter this weekend (which is when I do all my letter writing!)
I am so getting that magazine. Sheesh...it was like you were speaking to me....balancing life and work...I just cannot seem to do it these days. Between work and life and adoption and fertility appointments I'm just losing it. I'm sleeping from 9pm through 7am and then rushing off to work and trying to even fit in a nap if I can each day. I'm losing it quickly. Something's gotta give. I'm excited to read this article. Maybe it will help.
Thank you so much for this great vlog!
I love the vlog! Working on my letter!
Ali,
Thank you! I am very happy at the wonderful outpouring of support for this letter-writing campaign.
So many fantastic letters have been emailed to me (copies of ones emailed to Mariela Azcuy)!! It is just wonderful!
I am hoping to get permission from some of the letter-writers to post their letters, or excerpts from them, on my blog as "sample letters"... to inspire others to write their own letters... not just to Mariela Azcuy but to any other media contacts we can dig up.
Endometriosis Awareness Month is in March! We're gaining momentum. This is our chance to be heard. Magazines like running stories that match up to "awareness months".
If we all get moving as a team, I truly believe we can get decent endo coverage in the media FINALLY!
I think I saw your draft letter before, right? Well, please send me the final once you have it done. :)
Also, let me know if you'd be OK with me posting it online. I can just post excerpts if you prefer. It's entirely up to you.
My goal is simply to get a movement going where endo patients starting banding together and speaking up to DEMAND proper media coverage of endo!
For goodness sakes, 89 million women and girls are suffering with this illness!
Thank you for your help!!!!
Jeanne
Hi Jeanne! Congrats on your first vlog!!
Aimee
Hi Aimee!
Thank you!! I appreciate you stopping by!
I hope you are feeling well! :)
Jeanne
Hi Jeanne,
I think your effort to bring awareness to the public through mass media is very commendable. I signed your petition and wish you the best of luck!
Vin,
Thank you very much for your support and for signing the petition! I really appreciate it!
Vin just found my blog via twitter. I installed TweetDeck last night for managing twitter messages. I highly recommend TweetDeck. You can install it from the Internet for free.
I'd like to mention to my readers that Vin has a cool article on his blog!
While the article's main focus is trying to prevent illness via healthy lifestyle choices, his tips are also useful for patients who are already chronically ill.
Check it out:
http://naturalbias.com/is-disease-sneaking-up-on-you/
Jeanne
Kudos for having the courage to put yourself out there like that! I have no problem sharing on my own blogs but I'm sure I'd be too scared to make a video and post it. Maybe one of these years I can work up the guts.
Even though my surgery confirmed that I do NOT have endo, I'll still sign anything you toss my way and help spread the word. There are too many people who have no clue what it is or how those kinds of symptoms can affect our lives.
Looking forward to your next vlog!
Excellent job on vlog post! As usual you spoke eloquently and passionately about the need for mainstream media coverage of endo. I am sure that your efforts will bear much fruit. Congratulations on your first vlog, and I hope it brings lots of awareness!
Maureen,
Thank you for your kind comments!
I really appreciate it. I had thought about doing a vlog for quite some time and when this chronic illness article fell into my lap via the email from Mariela Azcuy, I just felt it was time to use a new tool to try & focus attention on this serious illness that you are all-too-familiar-with!
Jeanne
Congrats on your first video blog! I am excited whenever more of us get out there in video format. Is there any way to also put this on youtube?
Steph,
Thank you! Yes, I think video gets people's attention... if the number of comments to this very blog post is any indicator!! :)
I had never done a video before and actually tried uploading it to YouTube first but it wasn't cooperating very well.
So, my husband has some special software he thought might get it working quicker. (We were both tired and speed was of the essence). So we tried the way he suggested and it worked.
I would prefer YouTube because I can't embed the code from this elsewhere. (I've tried unsuccessfully).
So in the future, I hope to vlog on a day or night when I'm not so pressed for time. Maybe then YouTube will work out OK. I may have been too impatient with it. It was just taking forever to upload so we killed it.
If you have a clue of how I could convert this to YouTube, I'm all ears. :)
Thanks for the support!!!
Some excellent letters are pouring in!! March's Endometriosis Awareness Month could get interesting...
:)
Jeanne
Cassie
Thanks for the kind words about the vlog!
I also really appreciate your support regarding the endo cause and petition!
I know you've had your share of pain (!) and that you have a much better understanding than most non-endo patients of just how big an impact it can have!
Jeanne
Alicia,
THANKS!!!!
Well, I have to say... I think this vlog post has already gotten more comments than any other post I've written. :)
It's funny. Growing up I was always really shy. Then endo FORCED me "out of my shell"... (at times to an opposite extreme).
I had to advocate for myself with healthcare providers. That forced me to speak up for myself!
I began attending endo support group meetings in 1992. That led to be talking about things I never dreamed I'd talk about publicly.
So I have had a few years of practice getting accustomed to talking about endo with people I may or may not know.
In a funny way, I think all of that made doing the vlog easier.
Yes and no for being nervous. I had been waiting to do a vlog for a long time. So I had given some vague "back of my mind" thought to making a vlog in general for awhile.
It wasn't until maybe the day before I made this vlog that it hit me, "I need to make a vlog to promote endo awareness".
Once that idea popped into my head, I was kind of restless and anxious to get it done.
The preceding night just didn't work out. So by this point in time (i.e. this video), I'd been thinking about what I wanted to say for a good 24 hours off and on.
I'm normally one to write everything down. However, I surprised myself and didn't do that for this. I didn't obsess over a script like I thought I would. No script at all.
I just had this kind of strange, calm feeling like, "this is the right time to do the first vlog and I basically know what message I need to deliver".
I actually wasn't anywhere near as nervous as I thought I would be! I mean... I was nervous in the aspect that I kept thinking all day about what exactly I was trying to say BUT the good thing was I didn't obsess over how to word it.
It just felt like I'd find the words to get my message across.
So, yeah, I was nervous but not anywhere near what I expected. I just knew what I wanted to say and said it.
Take One: I got about 30 seconds along and my throat tickled. I had to stop for water and start over.
Take Two: You saw it! I just did it all at once with no script. I didn't know exactly what I was going to say until I was saying it.
I'd spent so much time reading it and thinking it that talking it was relatively easy. I just had to concentrate because I didn't want to skip an important point and have to start from scratch. It worked.
I think speaking at endo support group meetings since 1992 helped.
If someone offered me a million dollar check in 1991 to videotape myself talking about any subject for 6.5 minutes - even if no one was going to see it - I would have said, "no way"!!
I still get shy in certain settings (i.e. the nightmare scenario for me is going to hubby's holiday party for work and feeling forced to do small talk with strangers... I detest that)...
I'm not a big party person! The only kind of party I ever have a good time at is one where it randomly comes to my attention that someone else there has endo or one of my illnesses... :) Then I have a chatting buddy to stick with for the party.
If I'm talking with someone else who is chronically ill, then I have plenty to talk about (without resorting to mindless small talk) AND I have plenty to listen to with genuine interest (hear the other person's story).
I'm not a good one for chit-chat about the weather. I have too many serious things weighing on my brain to get any satisfaction out of, "is it going to rain tomorrow?"
You don't look nervous on your vlogs at all!!! You'd never know you had any nervousness... especially the ones where you were "fake baking" cookies. :)
You were so smooth and so funny... It just looked like you were having fun!
I really hope we can get some decent coverage for endo. I have read every single comment on the petition and I feel a responsibility to do my best to get coverage... and to ensure that it's factual!
I look forward to reading your letter. You have such a great way of wording things. I can't wait to see it.
That More article was just SO outstanding! I really was impressed!
Having been interviewed on local TV about endo and seeing how things get edited to the point that they REALLY differ from the raw material, I totally appreciated that article on so many levels.
It was thourough, thought-provoking, detailed, informative... it gave coping ideas, it gave legal rights... It was just an incredible article!
Boy, what I would give to have the same writer do a story about endo! She clearly understands autoimmune illnesses.
It's a great article!! You should have seen me when that article landed in my inbox! It felt like a birthday present or something.
Seriously, a story like that can help SO MANY people! It just totally made my day when I read it!
Yes, I certainly thought of you when I read it. The thing is... I thought about so many people I know while reading that. It was just packed with info!
It really resonated with me personally and because I have heard so many women's stories that mirror what the article talked about.
You have been burning the candle at both ends for a long time now. It's no wonder you are feeling overwhelmed.
You just have SO much going on!
I'm glad you're getting sleep at least. (That makes one of us, I'm afraid).
I'm really proud of you for trying to get naps in. Your body has been through so much and the emotional toll of infertility and miscarriages just complicates it more.
I agree that you need something to rejuvenate you and/or give you hope and coping mechanisms to get through each day with as little stress as possible.
I hope you feel MUCH better VERY soon!
Thank you so much for this sweet comment! Of course, I know by now before opening your comments that they are always sweet! :)
I really do think that I'm going to have to get cracking on cranking out some vlogs because clearly more people are reading this post than my other ones.
"If it ain't broke, don't fix it", right?
So I need to stick with the new formula, huh?
First, I need to get some decent SLEEP! My insomnia is REALLY bad now. I have been awake since 10:00 am on Friday. It's now 12:58 am on Sunday! What's that... about 39 hours awake? (May not be counting right about now)...
THIS IS NOT GOOD!
I may have to take another blogging break. I am too sick to play with fire. I'm trying to keep on blogging but pace myself.
This morning I was on 3 instant messaging sessions at once (!) and I emailed you back something during that time plus I fielded a couple of tweets. All endo-related.
First someone IM'ed me on Skype. Then another person IM'ed me on Facebook. Then a 3rd person IM'ed me on Facebook. Three windows...
Plus I was emailing you. Plus I was sending tweets to two people who may have press connections. (Messaged them to see if anyone will cover endo).
So I really need to chill out because I am pushing the envelope badly here!!!!
Hubby jokingly calls me "Dr. Jeanne" (to mess with me).
Alicia: Dr. Jeanne says we both need as much rest as possible and we need to minimize computer time.
I think we need to set a timer and then... that's it, blogging's up for the day!
Yes, I'm burning the candle at both ends too!
Take care!
Jeanne
Having watched my daughter suffer for 27 years with endometriosis, I’m encouraged at how she is putting her illness (and its effects on her & her family) to a productive use by seeking out attention from those people that may have the power to help others.
Sandra (Jeanne's mother)
Hey guys... check it out! My mom posted a comment! My mom doesn't comment on blogs. Heck, she doesn't even use the computer. This is huge!
YAY MOM!
:)
-----------------------------------
Mom,
Thanks for your comment! I know your computer has been broken and you don't go online and I appreciate you going out of your way to give me a comment.
I really appreciate your support!!
Thank you!
Love,
Jeanne
Way to go Jeanne! You are an inspiration and I can't imagine what you have been through these many years. Your cousin, Jenny
Jenny,
Thank you!! I really appreciate your support!
I don't know if you had a chance to read the article that was linked in this post, "Ill in a day's work" but I think you'd find it very interesting given your line of work!
It talks about employers' legal responsibilities... and gives tips for how employers and chronically ill workers can work as a team for the best interest of all. Check it out!
If the woman who wrote that article (Donna Jackson Nakazawa) would write an endo article, I'd jump up and down.
That's how fantastic that article is! If only someone would write such a high-quality article on endometriosis!
Donna Jackson Nakazawa of the More article clearly has an understanding of autoimmune conditions.
Endometriosis is widely believed to be autoimmune as well as immunological and reproductive.
Autoimmune illnesses tend to travel with "buddies". So often one patient has many co-existing illnesses.
So having that writer do an article on endo would be a dream come true!
Thanks, Jenny, for your support!
:)
Jeanne
I must apologise for missing this wonderful post! I am adding links to your article in my blog and will post this - probably tomorrow.
I hope that if more of us shout about it, we'll get more research done and find a cure. A cure. Gee wouldn't that be nice! You've gotta dream, eh? But the large goals are achieved by small steps. We have to start by shouting.
Thanks for organising the shouting!
Foxy
Foxy,
There's no need to apologize! :) I appreciate any linkbacks! I believe the better the cross-linking between endo bloggers, the better the media will hear our pleas.
While I look forward to your post, it important for you to rest. So don't stress over it. When you do post it, please let me know it's up so I don't miss it! I'm trying to keep track of an awful lot of things right now so reminders help me not lose track. :)
I, like you, hope that the more of us shout about it, the sooner we'll get more research done and find a cure. The squeaky wheel gets the oil, right?
Yes, you have to allow yourself to BELIEVE that someday there WILL be a cure. At least that's how I feel. Hope matters.
My friend Alicia (aka Yaya of the blog Yaya Stuff) sent me a refrigerator magnet with this quote:
"Once you choose hope, anything is possible"
-- Christopher Reeve
Foxy, you have the spirit! I'm with you kiddo. We have to believe a cure is possible and each do whatever small steps we can to get the endo cause that much closer to a cure!
There's nothing wrong with dreaming! Dreams can come true.
Another magnet quote from my buddy Alicia:
"There is nothing like a dream to create the future"
-- Victor Hugo
Yes! The large goals are achieved by small steps. I agree we have to start by shouting.
It makes me laugh that you are perceiving me as the "organizer of the shouting" because so many comments preceding this remarked about how "quiet" and "soft-spoken" I am.
Alas, I was pretty sedate in my first vlog post thanks to one of my medications making me drowsy.
However, I can shout to get attention on important subjects when necessary.
My husband thinks it's hilarious that some of my blog readers think I'm soft-spoken after watching my video. Anyone who has met me in person knows that I'm not always as quiet as I was in the vlog. :)
There is some exciting news... if you didn't happen to see today's post (below). I found the blog for the health writer who did the More article. So we can comment directly to her blog!
So check out the post below for more details on that!
Monday, February 23, 2009 "Jeanne Endo Blog" Honors Donna Jackson Nakazawa, Author Of The "Ill In A Day's Work" Article In The Feb 2009 Issue Of More Magazine!
I do think that with all of the teamwork between bloggers plus the wonderful support we get from our loved ones, we each can make some small steps in the right direction!
Thanks for stopping by. I saw your message on your blog and know you need to get some rest. So do that. :) Self-care is so important.
Lately I'm realizing that I need to do a better job of practicing what I preach. I've been pushing it pretty hard lately. So thanks for reminding me that I need to prioritize. The risk for further burnout is real and I know I need to slow down myself in the near future.
Take care,
Jeanne
So nice to hear your voice ... appreciate all of your efforts to push for better coverage. I'm off now to sign the petition!
Coming2Terms,
Thank you for your feedback!
I really appreciate you signing the petition too!
For anyone who missed that petition link, it's:
Endo Awareness Petition
Thank you very much!
Jeanne
Jeanne,
I figure I'm only a month late, but that's typically early for me, so I'm going to add my comment after finally getting the silence around here to be able to watch the videos... I'm sure you understand what I mean!
I'm glad that you've chosen v-logging as another method to get the word out there, especially to bring attention to this particular topic. The reality of the situation is that most of us who are ill still are forced to work. Most of us are forced to work in conditions that don't necessarily allow for as much flexibility to make accommodations for our specific needs should we require them. And yet Human Rights dictates that we cannot be discriminated against in the workplace due to our health status. But so many of us still are.
I believe that this article is a must-read for anyone who is living with a chronic illness and working at the same time. Take the tips that are given and have the discussions with your employer, no matter how difficult and awkward it may be. At least once the conversation has been started, you will be able to say at a later date "Remember when I told you that I need..." or "Remember when we discussed that the only time I could see my specialist was..." It just might save a lot of heartache in the end.
Take care,
Melissa
Melissa,
I'm glad you like the video format as yet another way to reach people. People seem to be responsive to it.
Melissa, I know you are in a terrible spot with your current job situation and I wish I could wave a magic wand to make it better.
You made some excellent points. I'm just sorry that you are "in the frying pan" right now with your employer playing games and being unethical for sure and illegal as well.
Jeanne
grene (Alanna),
Thank you for your comment.
I have a long-standing policy against posting comments that contain commercial links such as the one that followed your name.
However, I couldn't find a blog name or email address by which to contact you. (I didn't want to ignore your comment).
So I deccided to break my own rules and go ahead and publish your comment (so you'd see it) and then just delete it. If there's a way to delete just a portion of a comment (i.e. a link), I don't know what it is).
So, this was the only way I could think of to let you know that I saw your comment, I appreciate it, and I'm glad you're enjoying reading the blog.
I appreciate you leaving your first comment and certainly didn't want to discourage you from doing so!
I just don't ever publish comments that link to commercial sites (see previous blog posts about ad policy).
I hope you'll keep visiting often and that you find the blog helpful. Thanks for stopping by! :)
Jeanne
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