Friends | Posted by Jannie on 10 November 2008 @ 9:43 AM
My sister and cousin never knew that the cold and windy fall day nine years ago I went out alone “for fresh air” in the fields behind the barn (if they remember at all,) it wasn’t really allergies making my eyes so red when I returned. It was from bawling them out while I was gone because there they were with their beautiful babies and their talk of whose angel was starting to hold her head up and whose was starting to take steps alone and hold a spoon by himself. And there was I after my 3rd miscarriage and various procedures to correct my uterus and try to repair the damage to my pelvis done by endometriosis, damage I didn’t even know I had until my infertility heartbreak began.
Endometriosis sucks. It’s painful often to the point of curled-up-in-bed-fetally debilitation. It can mess with fertility. Mess with life. And all too often is marginalized or dismissed by doctors. And mostly misunderstood and incorrectly covered in the media.
BUT… my pal Jeanne at her Endo Blog is spearheading a petition you can sign (takes 2 MINS OR LESS TO FILL OUT) to spread awareness and FACTS about endometriosis. She’s submitting it with a letter to Oprah and The View. So please help if you can. Every signature counts!
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On 10 November 2008 at 7:49 pm Jeanne said,
Jannie,
Thank you for posting this!!!
Jeanne
Jeanne’s last blog post..Endometriosis Blog: Endometriosis Awareness Petition Will Be Sent This Weekend To Oprah And The View
On 10 November 2008 at 8:34 pm Avani-Mehta said,
Jannie, thank you for letting me know. I signed the petition. A close friend of mine suffers from this – it’s terrible. The pain is unbearable and we all feel so helpless against it. It took 2-3 years of pain for her to find out that it’s Endometriosis she is suffering from.
Avani-Mehta’s last blog post..Top 8 Motivation Hacks – #2
On 10 November 2008 at 8:45 pm Mama Zen said,
I’m there.
Mama Zen’s last blog post..Back And Black (And Blue)
On 10 November 2008 at 11:27 pm Lynn said,
Jannie – I signed. Thanks for posting this. One of my friends thought she would never get pregnant and had the laprascopic surgery to get rid of her endometriosis and she got pregnant that weekend. (He’s 13 now.)
Lynn’s last blog post..Traveling cake, Leviticus and snacky lunch
On 11 November 2008 at 12:04 am Miles McClagan said,
I’m still unhappy with Oprah for taking away Hilarys presidency…crosses arms, furrows brow…
Miles McClagan’s last blog post..The road to redemption passes through Kingston Car Park
On 11 November 2008 at 1:35 am tubeless said,
Thanks for your post on my blog. Endometriosis is a horrible disease. I signed the petition. Please let me know if there is anything I can do to advertise about this petition. Do you want me to post about it on my blog with a link to the petition?
tubeless’s last blog post..tooth brushing, bath time, and DH’s job
On 11 November 2008 at 1:58 am Jinxi said,
I signed it.
Every little bit helps and I hope it reaches O and The View so the voices can be heard!
Winx, Jinxi
Jinxi’s last blog post..The First Of Many Steps
On 11 November 2008 at 2:08 am Cathleen said,
Thanks for commenting on my blog. I signed the petition. What a great idea!
Cathleen’s last blog post..15 weeks!
On 11 November 2008 at 3:22 am Shay said,
((((((((((Jannie)))))))))))))
Shay’s last blog post..The Sad Demon
On 11 November 2008 at 4:49 am Caity said,
Wow that is so sad. I’ll go sign it.
Caity’s last blog post..Loss of faith.
On 11 November 2008 at 8:33 am Mia said,
There are only a few women I know who have this. It’s just not something any woman would want to experience. I’m glad your friend is doing this. It will give good light to a subject that’s often overlooked in our world of ‘issues’.
Mia’s last blog post..The Journey to Hysteria ~ 2 (Father Issues)
On 11 November 2008 at 9:04 am Jannie said,
Jeanne: You are the inspiration and the impetus, thanks.
Avani-Mehta: You are so sweet to sign the petition, we thank you from the bottom of our hearts.
Mama Zen: I hope you are feeling better on your own journey and illness of late. You are an angel.
Lynn: Thanks for signing and for your inspiring story. In my travels today I came across a woman who suffered NINE miscarriages, so I’m humbled.
Miles: Thanks for bearing with us on this “womens’ thing,” although the men who love us are deeply impacted too, of course. It affects the loved ones too. Thanks for popping by, Mate.
Tubeless: You are the Best! As I left on your blog, sure any links to the petition will be of help. Thank you so much.
Jinxi: You are a doll. Your support is so appreciated and you are right — it all the little bits that help. Thank you! I’ll be by your blog again soon.
Cathleen: Your story on your blog so deeply touched me. But now you’re 15 weeks pregnant!! That is so exciting. I will really enjoy hearing your pregnancy updates. And thanks for signing the petition, it means so so much.
Shay!: Believe it or not, that was my first ever Cyber Hug. I’ve been feeling so left out as I’ve been seeing those hugs left on so many blogs. Yay, I got a hug! I got a hug!!!
Caity: You’re The Best! (As usual.) As I said to Lynn, I ran across a soul today who has had 9 miscarriages, I am so a lightweight compared to her.
Mia: So great to see you again, I haven’t been to many of my “old buds’” sites today but I’ll pop by in the morning and check out your latest no-doubt heartfelt and interesting post.
On 11 November 2008 at 10:00 am Kerri said,
I signed. One of my livejournal buddies has had this for awhile and it has caused her great pain physically & emotionally.
Kerri’s last blog post..You never call!
On 11 November 2008 at 7:41 pm Pink Ink said,
That would be so hard, not only physically but emotionally. I’ve had many girlfriends suffer from this.
Pink Ink’s last blog post..Breakfast, Philippine-Style
On 11 November 2008 at 8:03 pm Jannie said,
Kerri: Thank you so much. I always thought my period pain in my teens and 20s was NORMAL. Yikes. The things we let ourselves get used to, eh.
Pink: You are correct that it wears both your body and spirit down. And thanks, as usual, for popping by.
Jannie’s last blog post..Endometriosis sucks
On 11 November 2008 at 8:25 pm Bee said,
I’m sorry for your pain. I will definitely come back to sign that form later tonight (I’m at work).
I’ve heard of many women who are misdiagnosed or doctors say the pain is all in their head. That is just so sad.
On 11 November 2008 at 9:41 pm Fancy said,
My sister and one of my cousins both had it. My sister had her hysterectomy 3 years ago, my cousin is in surgery as I’m writing this. It’s horrible.
Fancy’s last blog post..Gram’s memorial
On 11 November 2008 at 10:24 pm Jeanne said,
Jannie: I really appreciate you posting this!!!
Jannie’s readers: I am very grateful for your signatures on the petition (http://www.gopetition.com/petitions/endometriosis-awareness-understanding/signatures.html) and for your support!
This poorly understood illness causes so much pain (physical & emotional) for endometriosis patients and their loved ones. It can also cause infertility and miscarriages. I very much appreciate your support!!!
–
Jannie, thanks again for all of your efforts on this. I don’t know if your readers realize that you spent a great deal of time yesterday scouting out endo blogs and leaving links about this!!! You are an inspiration to me!
Thanks again,
Jeanne
Jeanne’s last blog post..Endometriosis Blog: Endometriosis Awareness Petition Will Be Sent This Weekend To Oprah And The View
On 12 November 2008 at 2:00 am Mareike said,
I signed the petition although I came here via Nancy’s blog because you have my mother’s name and I have never known another person with that name. She was Dutch. Are you? Do you pronounce the J like a Y?
On 12 November 2008 at 3:26 am Miladysa said,
I too have this terrible disease :[
On 12 November 2008 at 4:14 am Jannie said,
Bee: Even with all our humor and funstering, you are a friend indeed when the chips are down, through and through. Thanks!
Fancy: Wow, it cuts so close to home for so many of us. I’m sure we will speak soon about how your cousin makes out.
Jeanne: You are my hero and I am just a helper in your undertaking. You go get ‘em , Girl!! Rawrrr.
Miladysa: I e-mailed you. God bless!
On 12 November 2008 at 4:22 am Jannie said,
Mareike: You are so sweet not only to visit my blog but to sign Jeanne’s endometriosis petition!
No, I am not Dutch, Jannie is a nickname and it is pronounced with the J like in juice. But last year a man introduced me as Yanni at a songwriting event and I started talking in a Scandinavian accent, much to the humor of my friends who knew me. Do you have a blog???
On 12 November 2008 at 6:59 am Barbara Swafford said,
Hi Jannie – What a great idea. I love when bloggers use their blog as a platform to spread the word. I’m there.
Barbara Swafford’s last blog post..NSNBOTWs – 2 Gals From Down Under
On 12 November 2008 at 8:10 am Jeanne said,
Jannie,
It is heartwarming to see the outpouring of support for the endometriosis cause! (See petition link below):
http://www.gopetition.com/petitions/endometriosis-awareness-understanding/signatures.html
It’s amazing how many are touched by endometriosis.
With an estimated 5.5 million endo patients in North America diagnosed w/endo and estimates that say as many as 89 million women have endo worldwide, it is so common for those who don’t have endo themselves to KNOW someone who does.
Plus there are MANY patients who are undiagnosed with endo due to the need to have laparoscopic surgery to GET a diagnosis OR due to them lacking health insurance to pay for this surgery!
So it is an illness that is under treated, misdiagnosed, improperly treated, dismissed by many doctors, etc.
Thank you, everyone, for your support!!!
Jeanne
Jeanne’s last blog post..Endometriosis Blog: Endometriosis Awareness Petition Will Be Sent This Weekend To Oprah And The View
On 12 November 2008 at 8:21 am Jannie said,
Barbara: You should know about spreading the good word, you do it all the time on your blog. Thanks.
Jeanne: Exactly! And I feel the best is yet to come and you will accomplish your goal of getting the Awareness & the FACTS spread! xo
On 12 November 2008 at 8:49 am Munchkins and Music said,
It really does. I have seen friends in so much pain, I hate it for them!!
Munchkins and Music’s last blog post..Wordless/ful Wednesday
On 12 November 2008 at 9:03 am Jannie said,
Munchkins: Thanks for stopping by! Please spread the word if you can, every little bit helps build awareness.
On 12 November 2008 at 10:30 am Robin said,
Signed.
I don’t know whether I have had endometriosis, but I used to have very painful periods, so I know what that is like. ANY kind of recognition and work on this would be helpful to many people.
Robin’s last blog post..How To Find Happiness
On 12 November 2008 at 2:57 pm gertru said,
Jannie, I’ve just sign the petition. I’ve been diagnosis of bowel endometriosis 3 years ago, maybe next year I will try to get pregnant for the first time.
Hug & kisses !
gertru’s last blog post.."Suerte es acertar entre la casualidad y el destino, supersticiosamente hablando."
On 12 November 2008 at 4:54 pm Jannie said,
Robin: You are correct that recognition can be so helpful. Painful periods can certainly be an indication but the only real diagnosis is via laparoscopy so let’s hope every woman will get the diagnosis she deserves. Thanks.
Gertru: You are so kind to visit my site and sign Jeanne’s petition. THANK YOU SO MUCH!! I wish the very best for you and I will be checking back on your blog.
On 12 November 2008 at 9:04 pm Jeanne said,
Gertru,
I visited your blog & used your translator.
My blog has a Babel Fish translator. So you can translate it from English by clicking the language you choose.
The translator is in my blog’s sidebar.
Thanks!
Jeanne
Jeanne’s last blog post..Endometriosis Blog: Endometriosis Awareness Petition Will Be Sent This Weekend To Oprah And The View
On 12 November 2008 at 9:22 pm gertru said,
I posted the petition online in my blog in order to many women of my country could sign it too.
gertru’s last blog post..ENDOMETRIOSIS: creando y tomando conciencia de ésta enfermedad
On 12 November 2008 at 9:55 pm Jeanne said,
Gertru,
Wow!! Thanks for writing an endometriosis post on your blog!!
Jeanne
Jeanne’s last blog post..Endometriosis Blog: Endometriosis Awareness Petition Will Be Sent This Weekend To Oprah And The View
On 13 November 2008 at 7:09 pm Debi said,
I’ve had PID in the past and had 2 miscarriages.
I’d got to the point where I was accepting that I wouldn’t be having children and was trying to concentrate on the positive aspects (which do exist) when I got pregnant.
Wishing you happiness, whatever happens, and sending hugs. xxx
Debi’s last blog post..Another day … another rant …
On 13 November 2008 at 11:18 pm Patricia said,
I have had so many students with this debilitating illness – and have watched as they have endured so much pain and heart break. I have already signed the petition and am on the mailing list…
You are so good to advocate and share your story…good medicine and good healing.
Patricia’s last blog post..Hats Off for Cleft Palates
On 15 November 2008 at 4:42 am Talon said,
Truly very upsetting and sad. I know two women who suffer with this and my heart goes out to them and to you.
I signed.
Talon’s last blog post..Peeking…
On 15 November 2008 at 6:19 pm Jannie said,
Jeanne: I’ll have to try the Babel Fish one to see if it is more accurate than others. Mind you translating human thoughts digitally is not an exact science but it’s funny how a lot of the time the translation ends up sounding like a crazy Madlib.
Gertru: THANK YOU!!! That is so amazing. We just never know how we can reach out to one another and make a difference. And I know Jeanne thanks you too, she is so happy with all this positive response.
Debi: We all have our own heartaches, don’t we? Though our physical and emotional pain seems insurmountable at the time somehow we keep moving forward. And thnaks to all of you Jeanne will make a difference to others with this petition.
Patricia: It does not surprise me that you who has beenthoughso such is once again reaching out to help others. Thank you.
Talon: Likewise on “you’re the best” Thank you!
On 19 November 2008 at 5:12 pm Jeanne said,
Hi everyone… Wow!! I see even more new comments about the petition!
—
Jannie -
Ha ha (only half joking)…
I REALLY appreciate you writing this post sooooooo much. (I may even have to “borrow” that picture sometime for a blog post on my end).
—
Patricia -
I’m sorry to hear you’ve had so many students who have endometriosis! I wouldn’t wish it on my worst enemy… but I try to remind myself that without it I would never have started a local endo support group (and met some AMAZING women!), I would never have started blogging about endo, I would never have met Jannie online, and I would not have gotten to interact with nice people like you! So I choose to believe “everything happens for a reason” and that helping fellow endometriosis patients is part of my “purpose” in life.
Also, I like to think that part of what I should be doing with my time is simply *CREATING AWARENESS* about endo to the general public. So the petition came naturally when I started reading all of the misinformation in the press following the diagnosis of two “Dancing with the Stars” dancers!
Their diagnoses has definitely generated buzz about endometriosis. Unfortunately, much of that buzz has been misleading messages or confusing statements that have the potential to do more harm than good!
If you still have any contact with any of your former students who have endo, please them about my blog. I have had endo for 26 of my 39 years. While I am no medical expert (!), I have learned a trick or two along the way and I try to share my experiences with others in the hope that it will help them avoid some of the pitfalls I have been through.
You are very right that endometriosis can cause terrible pain and heartbreak. It is a very serious illness that, unfortunately, is not taken seriously enough by many doctors. Women deserve better treatment options… Women need a better method for diagnosis than surgery (which as of now is the only definitive way to diagnose endometriosis)! Too many women are suffering in silence, misunderstood by friends/their own family members/employers/fellow employees, etc. Endometriosis can have such a *HUGE* impact on the life of the patient AND the patient’s loved ones. Doctors are finally starting to get better informed – some of them anyway – about endo. So diagnosis is happening at younger & younger ages).
So if you should encounter any more students with endometriosis, I would love it if you could direct them to my blog:
http://www.endendoat.blogspot.com
We discuss not just endometriosis but other chronic illnesses as well (many of which are related to endometriosis somehow). Sadly, many illnesses are commonly found to co-exist with endometriosis. For example… one patient might have endometriosis, fibromyalgia, and interstitial cystitis. Since I have all 3 of these conditions (and more), I use my blog as a place where patients can talk not just about endo but about all of their illnesses in a safe, supportive place where they can learn about integrative medicine (the best that Traditional Western Medicine has to offer *COMBINED* with the best of alternative medicine). *THANK YOU* so much for signing the petition! The more signatures we get the better! Thanks to my wonderful blogger friends like Jannie, we continue to get the word out to more and more people and the signatures are still rolling in.
I am going to continue to collect signatures indefinitely. That way, anytime we want to give the *FACTS* about endo a boost in the media, we have a handy-dandy petition full of names ready to refer TV shows and newspapers to. I really appreciate your support and I know Jannie does too!
—
Talon -
Thank you for signing the petition and expressing your support here! Every little bit helps. So if each person reading about this signs it and mentions it to a friend or family member, the word of mouth can really help out in getting more names. The last time I checked we had reached 185 signatures! So the word of mouth and blog posts like this one are really working! Thanks again!
—
Debi -
I am so sorry about your miscarriages. I have met many women who have been through these terrible physically and emotionally painful experiences. (Endo increases the odds for miscarriage… Since I’ve been in endo support groups since 1992, I have met several women who have had miscarriages and it is just heartbreaking! I’m so sorry you had to go through that!
—
Thank you so much to everyone who has signed the petition, expressed support here, and passed the word along to others. It is heartwarming to see such support!!!
THANK YOU AGAIN, JANNIE!! You rock!
For those who may have missed it, here is that petition link one more time:
http://www.gopetition.com/petitions/endometriosis-awareness-understanding/signatures.html
Jeanne
Jeanne’s last blog post..Endometriosis Blog: National Adoption Awareness Month
On 19 November 2008 at 5:38 pm Jannie said,
Jeanne, I will for sure be posting again about you and your blog and petition and the wonderful difference you are making!
THANK YOU!!!!
On 21 November 2008 at 4:46 pm Jo said,
Sorry to hear about this, Jannie. I will never understand why some issues/diseases are so under-researched and resourced.
Jo’s last blog post..Post-natal
On 23 November 2008 at 12:57 am Jeanne said,
Jannie,
THANK YOU you for your continued support!!
We are gaining momentum with more bloggers (endometriosis and otherwise) & their readers adding their voices in support of endometriosis awareness and understanding!
ANYONE interesting in supporting the endometriosis petition is welcome to sign:
http://www.gopetition.com/petitions/endometriosis-awareness-understanding.html
In response to Jo’s astute comment, it’s quite true that certain illnesses (often those affecting women predominantly or even completely) have been historically under-researched.
This is ethically wrong and utterly unfair to the patients affected by these under-researched conditions (and their loved ones, who are most certainly affected as well)!
On a more positive note, I have been interacting since last summer with a relatively new medical research organization called CureTogether.
Their site is: http://www.curetogether.com
Since their launch last July, CureTogether has targeted 3 illnesses that have been historically under-researched: endometriosis, vulvodynia, and migraines.
CureTogether is a medical research organization with many more conditions on the horizon – for research in the future. Their interactive website allows patients to add conditions not already listed to request research!
Everyone I have interacted with from CureTogether is well-informed, enthusiastic, and extremely positive.
If anyone here is interested in learning more about endometriosis or any of the other 127 conditions (and counting) that they are tracking on their fantastic site, I encourage you to take a peek there.
This organization CARES what patients think. They don’t just listen to doctors and scientists while ignoring the patients/caregivers affected by the illnesses being studied. They actually CARE!!
It’s so refreshing to encounter people who are so passionate about making headway with some of the most elusive and poorly understood conditions.
It’s even more amazing that they began by purposely tackling under-researched conditions like endometriosis.
After 26 years living with endometriosis, CureTogether honestly gives me HOPE. You can’t beat that!
Jeanne
Jeanne’s last blog post..Endometriosis Blog: National Adoption Awareness Month
On 23 December 2008 at 5:32 pm Jeanne said,
Jannie,
I’m writing a post about endometriosis & I hope you don’t mind but I’m going to steal your great cramp picture!
Jeanne
Jeanne’s last blog post..(VIDEO): Menstruation Education Courtesy Of Disney And Kotex!
On 29 January 2009 at 1:19 pm EvendiceElild said,
http://www.janniefunster.com – great domain name for blog like this)))
On 29 January 2009 at 1:54 pm Jannie said,
Jeanne: How did you slip in there with that comment without me seeing it until just now?? Sure borrow it – I did
Evendice: It was either Jannie Funster or Jannie Sob-Story, so the choice kind of made itself.
On 1 February 2009 at 4:11 am PaceFieleaw said,
http://www.janniefunster.com – cool sitename man)))
On 13 September 2009 at 11:27 am Jeanne said,
Jannie,
Heads up that I am about to appropriate a graphic from this post. I hope you won’t send any authorities to apprehend me. I fully realize absconding with pictures of a woman clearly having menstrual cramps could constitute a federal crime. Heck, why stop there? It might even be an international crime. On behalf of the 89 million women and girls the world-over who have endometriosis, I would like to ask your forgiveness in advance for blatantly lifting your lovely captioned photo. I didn’t think you’d mind. Hopefully I didn’t miscalculate. I owe you one.
Jeanne