I CHALLENGE YOU!

Let me just put a little disclaimer out there: When it comes to managing our health, we are all on the same team. Everybody has different ways of handling the physical and emotional aspects of endometriosis, PCOS, adenomyosis, infertility and beyond. You might feel how one person is managing their endo is radically outrageous, or you might be simply offended by hearing someone speak at length about an issue that gets them excited. But nobody is forcing you to change anything, and if hearing new information upsets you, walk away. It’s not a challenge. It’s honesty.

Just a friendly reminder that only spirited discourse will be welcome here. No snide comments, no fighting.

Of course if that were the case everywhere, we wouldn’t be having a raging national political war about how women handle their bodies. But that’s almost not relevant here.

Endo Sucks, Day 12: The best endometriosis video I’ve ever seen

Seriously, this is the best video breaking down what endometriosis is about that I have seen to date. It is perfect for sharing as an introduction to endo or as a refresher.

Click the image to see the video.

Produced by Endometriosis.org, it is currently being featured on the the website of Bradley Method instructor Kim Stanley in Tallahassee, Florida. A doula friend of mine, Erinn Streeter, works with her on her website and they have had this video on their welcome page for the month of March to honor endometriosis. I think that often, endometriosis survivors are so beaten down by the medical system even as we try to work with and fight within it, that they enter childbirth the same way: hands open and begrudgingly accepting whatever the doctors provide, without question. This is probably true for most Western moms-to-be — far too many, in fact. It has produced an C-section epidemic and shot maternal mortality rates so high because we are taught to live life in fear and pain and to ask no questions.

But we have options in our healthcare — and if you take one great thing from endometriosis, PCOS or adenomyosis, let it be the advocacy you are practicing for your healthcare. YOU are the best thing that can happen to you! Nobody else can advocate for you or educate you if you do not take a personal investment in knowing how strong you really are. I was worried a few years ago that doula training might mess with my emotions, but instead it rocked my world and opened me up in awesome ways. I am never more proud than when I am welcomed by a couple into the most powerful journey of their lives, no matter how their birth unfolds. At least they went in educated, open, and knowing not only that they are made of power but that they have a world of loving support around them.

AND SO DO YOU.

Another crazy weekend

Because of the wackiness that is journalism, my weekend is Thursday and Friday. But it came in handy today as it was International Women’s Day and I was able to participate in the third annual international Join Me on the Bridge event. The event began when women of Rwanda and the Congo met on a bridge to sore they could literally bridge all the issues between them and unite in peace. The idea caught fire and now women around the world -particularly war-torn countries – are participating to end gender-based violence. In jacksonville, we marched downtown to the Main Street Bridge with signs and tossed flowers into the St. Johns River to honor the many women who have lost their lives. It really was amazing, and it was very well attended! Photos will be posted tomorrow.

After getting rain-soaked on my walk back to my car, I went by my friend’s office to visit her and borrow The Hunger Games. (Jen was supposed to attend the rally with me but was feeling under the weather.) After that, I visited my mom at her job at the hospital and went to get some dinner, brought it to my mom’s house, sent some photos to the paper (unused but that’s OK), fought with Verizon sucking, and fought with all in my RX arsenal but eventually succumbed to a piercing migraine.

As soon as I got home, I took took two codeine and let nature take its course. So here I am: at home, finally eating dinner, little dog curled up with me on the couch, and watching random reruns on TV. My lips feel numb. And it’s only 9 p.m.

Just another wild “Saturday” night.

Endo Month, Day No. 7: Lest we forget

Found by @Amadi on Twitter.

Everything I do, I do it for you

I love you guys. Seriously.

I want to take a second to thank everyone who still checks here and apologize profusely for not making more time for this blog. With March (Endometriosis Awareness Month) just a day away, I’ll be back into the annual blog-every-day swing and hopefully that will keep me on track.

I’m also inspired to write here right now because of a long, personal and very touching email I received the other day from a dear reader named Kelly, who at age 21, has had a real fuck of a time dealing with shitbird doctors and the medical malice that is endometriosis, as so many of us do. Her email was extremely touching because she took the time to reach out to me, a basic stranger, and share her story. She also let me know that finding this site, and hearing our collective kvetching, made her feel less alone. And I hope she doesn’t mind me sharing the following snippet from her email:

“I kinda just needed to know someone else out there truly understands the fucked up reality that your body can be your own worst enemy. Thank you for some distorted version of renewed hope ”

I received her email when I checked Gmail on my new telephone, while I was at work. And I cried. And I wrote back some words of (I hope) support, information and encouragement. I haven’t heard back yet, but I hope I do.

I started this blog and the Facebook Endo Sucks! group a lot for me to connect to other people, to share and connect, though I assumed it would be mostly me shouting into the vastness of the digital landscape.

I was happily wrong.

I have found so many other people, in my town and far-flung across the globe, who share so many of these experiences practically verbatim. New people join the Endo Sucks! group every day. And with the Twitter feed, I’m getting to talk to even more people, organizations and even celebrities who are standing side by side in this maddening battle.

We exchange ideas. We support the bitching and the baby news. And most of all, we are all there for the primary purpose of helping each other. We are a diverse group who, with the twist of a chromosome, are united into one collection of daily warriors. And we grow every day.

It has served its initial, limited purpose of helping me know I’m not alone. It saves me every day. But it’s so much greater than that now. And from what you’re telling me, it saves you too.

I could ask for nothing better. So I promise to do right by you: to expand the reach of Endo Sucks! and to be more consistent here. Because you deserve it and I need it. We all need it.

Thank you for making this more than one thin voice in the dark.

Side note: Kelly tells me she found this blog by Googling “fuck you endometriosis”. I tried it myself and Endo Sucks! was the first non-paid link to appear on the results page. It makes me feel like a motherfuckin’ warrior. That is too awesome. Try it yourself; I did. The result:

I COULD NOT BE MORE PROUD

Day 31: Tie a yellow ribbon

That went fast. Anybody else think that went fast?

Online and in person, Endo Month was pretty darn successful for Endo Sucks! People around the globe made the promise to wear yellow in support of women living with endometriosis, and with the number of people joining the Facebook group (largely invited by their friends), I have serious hopes for the Web site once it it launched. Also, people in Jacksonville have said they’re interested in a support group, so I look forward to getting that rolling.

Today I sent off March with a bright yellow shirt despite the rainy day. Unfortunately, there was a hole in the shirt over my left breast — small enough to escape my notice until it was too late, large enough to attract everyone else’s attention. I thankfully had a black cardigan with me (with a yellow ribbon) so I put that on at work, but had to keep pulling it over my front. I looked like a bumblebee.

As we come into April, we come into another important awareness month for me and too many that I know: sexual assault and sexual violence. I thought I was going to be able to do a benefit this month but with doula training and the time and stress from work and getting through March, I don’t think I can. I will still make my gift to RAINN, and I hope you will too!

The ribbons on this page are important ones for many different groups, but here, they are representatives of endometriosis (yellow), PCOS and rape (teal) and infertility/miscarriage awareness and support (pink and blue). Take them, display them, find your own, or heck, look at the list of colors and representations online. It’s unbelievable! (FYI – May is Celiac month!)

Despite the weirdness and not perfect events of the day, despite the mild pain today and the fear of an impending moon, I am hopeful and happy that maybe I am helping others in this world, and that I have a long life of service ahead.

Thanks again, everybody — Happy April!

–Chanel–

Day 22: Walk for Freedom

I just want to take a moment to brag on my friends, family and local high school students who took time and money from their busy Sunday mornings to walk through downtown Jacksonville with me for Walk for Freedom.

If you missed out, please consider making a donation at http://www.justgiving.com/walkforfreedomflorida.

The group after Walk for Freedom 2009

Walk for Freedom and its sister events, Run for Freedom — London and Run for Freedom — Bermuda were conceived by Charlotte Wilberforce, the awesome woman behind Stop the Traffik. I met her in Bermuda last May; this February, she and I talked and got the first ever awareness event for human trafficking on behalf of Stop the Traffik in the USA under way, organized by me here in good ole’ Florida.

We walked a few miles total. We were a group of blue shirts (designed by me, I’m proud to say) that enjoyed the sunny, breezy March morning and handed information out to other folks on how modern slavery not only continues in sickening amounts, but hits home more than we realize: A 29-year-old Jacksonville man was convicted this month for child sex trafficking after tricking two teen girls to come here from Virginia for “job opportunities” … what they didn’t know what the job was to be forced into prostitution. Thankfully the girls testified against him, and with any luck he will be in jail for the rest of his life. Sadly, millions of people each year will never see such justice, and that’s why the 30 or so of us were out this morning — awareness, education and support. Thank you all again and again.

I also want to apologize if I was bossy and crabby this morning. I was up all night stressing about the event’s success or failure, plus obviously not feeling on top of my game (thanks endo). But everyone seemed to have fun and enjoy the day, and I am so grateful to everyone for being there. Yup, that’s me in the front row with my little yellow endometriosis awareness ribbon pinned to my burgeoning bosom, up a full cup size thanks to my moon’s hormones (thanks again, PCOS and endo, you bastards with perfect timing).

I think I’ve found an excellent sleep aid for us: After a nice Mexican lunch including a delicious margarita with fellow Walkers and coworkers David and Jason, I did one errand but started falling asleep while driving, so I went back to my loving bed and took a nap with the windows open. It was sublime. I recommend it.

Day 4: Preserving Your Fertility — it’s the most important thing, right?

I had a number of topics on which to write today, but my mood swings and participation in some of the discussions at I Hate Endometriosis (another Facebook group) have fueled me to address the phrase, “I want to preserve your fertility.”

It’s a favorite phrase for medical practitioners dealing with women suffering from endometriosis and other disorders, particularly ones who are young and in pain and thus scared and likely angry at this terrible twist of fate. I’ve heard it since I was 16. It has taken me 10 years to accept the fact that “preserving my fertility” is NOT what treating endometriosis is all about. After being brought to the absolute limits of panic by doctors pressing fertility into my brain every waking second and finding my way back again, to see someone else going through the same misery I know so well makes the anger well up and spill over from deep within me and I just have to let it out.

Do I want children? Absolutely. But I also don’t want to die in the process, since my pregnancy and delivery would be further complicated by my PCOS. I also am unwilling to give a doctor the time of day once they pull out the old “preserving your fertility” line or any variation thereof when it comes to treating endo.

I just have to wonder at what point these gynos, surgeons, fertility “experts” — the people we trust to care for us in an exceptionally intimate and painful way, both physically and emotionally — lose their humanity? In what seminar are they programmed to believe that the pain is largely psychosomatic and that a woman is a uterus in high heels, delivered to them to be pumped with the same failed chemical hormones over and over again, cut and lasered and stitched up over and over again, to live in a drunken haze of codeine and morphine and the general malaise that comes with the life description “I hurt”?

And at what point do we learn it is OK to accept this … this “life”?

Day 2: Go Yellow for Endo!

March is National Endometriosis Awareness Month, and March 2 is Wear Yellow Day! Be sure to wear a yellow shirt, scarf or dress and show your solidarity for those living with endometriosis, a painful and all-too-common infertility disease (with which I am intimately familiar).

Even if you can’t or don’t wear yellow on March 2, if you can wear yellow on ANY DAY in the month of March, please take a photo of yourself and send it to Chanel at endosucks@gmail.com. Your photo can appear on the official Endo Sucks! MySpace page at www.myspace.com/endosucks and maybe here in the group (if you want it to, of course). Be sure to get your friends involved too!

***EXAMPLES OF YELLOW YOU CAN WEAR IN MARCH***
* A t-shirt
* A tank top
* A tie
* A funky necklace
* A yellow ring
* Shorts — nice shorts, Bermuda shorts or basketball shorts
* A sweatshirt
* A jacket
* A ribbon or barrette in your hair
* A yellow scarf
* Yellow eyeshadow
* Yellow socks
* Yellow sandals
* A skirt
* A yellow sweatband
* A yellow or gold jersey
* Suspenders
* A yellow or gold sari
…The list goes on and on!

You can all do it. I know you can.

EVEN IF YOU CAN’T WEAR YELLOW ON MARCH 2, PLEASE VOW TO WEAR YELLOW IN THE MONTH OF MARCH AND SHOW THE WORLD YOUR SUPPORT!

Thank you for your love and support!

- Chanel