Posts tagged ‘friends’
Endo Sucks, Day 15: Be at peace (Co-worker support part one)
Last night was a stressful night that ended in a spurt of rage. I was super irritable and irrationally angry the two days before that. And I’m already anticipating feeling pissed at least once in the next 24 hours. Not a really good boost for positive health.
But after some venting about it on Twitter, my co-worker Al sent a remarkable tweet. First he asked if there were any “calming beverages around” (there were none; I was still at work and we have little alcohol at home). Then we had the following exchange:
A fine mantra for us all.
It seriously froze my anger and gave me calm; calm enough to start thinking about why dumb comments from strangers should be allowed to affect me so. And they shouldn’t. But because I am so deeply wrapped in this, and care and fight for my health and that of others, yeah, it’s going to spark a fire when you challenge or insult that. But I have to let it go.
And so I also present to you a photo of Al, my co-worker who is apparently also Buddha. He has been supportive of the Endo Sucks! movement and Endo Awareness Month, and even tweeted me specifically a while back to request a yellow ribbon from me. And so here he is:
Al, repping for Endometriosis Awareness Month!
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.
Like this:
Endo Month, Day 8: Photo support, family edition
It appears the photo posts are the most popular these days, and with good reason: It’s nice to see support!
Here’s a few that bear particular importance to me: they’re family!
The Supporter
Aliye is the one Endo Sucks! members often hear me refer to as “my sister, the doctor.” She graduates this year from the University of Miami medical school and will be an OB/GYN, thanks to some pushing and training from my side after we worked together in women’s healthcare a few years ago. She was 15 and I was 17 when we entered undergrad in the same year and have been close friends ever since. I consult her often with my questions and yours. With her good heart and strong mind (and exceptional research with the NIH in fibroids and continuing accolades and research), I am so proud for her to be my sister, my supporter, and someday the doc who swabs my cervix. (Well, maybe.)
My sister, repping for endo while on vacation
The Survivor & Supporter
Ladies and gentlemen: My mom!
My mother is awesome.
If you’ve read the About Me page, you’ll know my mom also was hit hard with endometriosis, as was her mother. And if you’ve read anything about endometriosis, you’ll see that it seems to travel in families. We aren’t any exception. My mom had a hard time all through her teens, just like I did. But when she had her laparoscopy at age 18, she was so inundated with lesions and adhesions that her repro organs were totally obscured. She was told she would never have children. Then she turned 19 later that month, became engaged to my father, and shortly after they married in 1983, she discovered she was pregnant. Then they told her she’d likely lose the pregnancy.
And now I’m here.
Doctors also tried to encourage her to get pregnant again right after I was born, but she wasn’t having it. She had a bad life with endo and a difficult pregnancy thanks to doctors misdiagnosing her idiopathic edema, so at age 20, she made the decision to improve her life, care for herself and her newborn and had a radical hysterectomy.
We butt heads like any mother and daughter, but my mom has always made it clear how much she supports me and my sundry health challenges, most of which result from endometriosis itself. When I considered IVF, she helped me research. When I screamed and ranted and had a major narcotic-induced meltdown, she listened. When I talk about kids or hysterectomy, she supports. And she wants me to enjoy my youth, which as you know is exponentially more difficult with endometriosis and all it brings. But she’s been there. Maybe not for as many years as I’ve had it, but she gets it. Every surgery she’s helping me and she wants an update after every doctor’s visit.
And in the end, when the going gets tough, everybody just wants their mom. And mine is great.
Endo Month 2012, Day 4: What happens when you don’t own yellow
People have asked me ‘why yellow?’ when it comes to Endometriosis Awareness Month. I don’t have an answer. I didn’t pick it. It’s not always a flattering color, and a true yellow is pretty bold. Also, it can remind you of pee, which doesn’t help anybody’s cause.
But we rock that yellow with pride when March rolls around, supporters and survivors alike. Unless you don’t own yellow or like yellow and don’t want to buy something you might wear just one month a year.
My buddy Brian found a way around the no-yellow issue and still was able to show his support. I present to you a PhotoShop non-Disaster:
PhotoShop counts, as long as you share that vodka.
As Brian himself said, “Endo Sucks… and so does owning nothing in yellow.”
What an awesome guy for taking the time to do this! I’ve known him since grade six and if you want to do something nice for him in return, go check out his business, Street Unity Customs, which provides custom fabrication and installation and specializes in body & suspension and advanced vehicle electronics.
Like this:
Endometriosis Month, Day No. 2: Photo double feature
Because I promised to keep the Endometriosis Awareness Month photos coming, I bring you a double feature: the first photos I received on March 1, one from a survivor and one from a supporter.
The Survivor
Kelly was the first to post her picture in the Endo Sucks! group to kick off Endo Month 2012. It’s a great photo of her, contrary to her own comments on it, but I loved her sentiment:
“… Today is one of those days I just want to curl up in a ball and sleep til the pain stops. Ironically, that gave me all the more motivation to get up and go out to make sure I don’t waste another day to this disease.”
Well put, Kelly. Kick endo’s ass!
The Supporter
Kassy of Tinsnips and Scissors not only posted a recipe for pumpkin-pecan-raisin-flax-chocolate chip muffins that sound so good they got me a little hot, but also posted a photo of her awesome endometriosis-honoring nail polish and gave a double shout-out to Endo Sucks!, which is even better when you remember that she and I have stayed friends since the seventh grade and I first started feeling the effects of this ridiculous disorder.
Remember, you have the whole month of March to wear your yellow — just remember the modern adage “pix or it didn’t happen”. Email them to endosucks@gmail.com, post them in the Endo Sucks! group on Facebook, and tweet them to @endosucks.
Be well — do well.
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
It’s practically endo month!
And it may well already be March 1 wheares one of you are! So let me remind you that you have one extra day –February 29, Leap day — to get your yellow together!
Yellow is the patron color of Endometriosis Awareness, so get anything — jewelry, shirts, ribbons, nail polish, etc. –and take a picture of yourself with your yellow. Tweet it to @endosucks, email it to endosucks@gmail.com, post it to the Endo Sucks! Facebook group, or all of the above, so you can be featured for Endo month!
And don’t think that if you miss the March 1 launch of Endo Month that you can’t participate. There’s 31days; don’t tell me you can’t find one yellow item and take your picture!
See you soon … Can’t wait to see what you send!
Day 29: Lost day
I want to blame my boss splitting my days off for being so tired and out of synch, but I don’t know if that’s fair.
Eh, who said life was fair?
Got up exceptionally late after another fun night of getting to bed late and not sleeping well. I keep having vivid dreams, several involving former boyfriends. I guess it’s on my mind lately?
Despite big plans of working out, cleaning and fixing my dishwasher, I was lucky to get an hour at the gym and a shower in before going to dinner at 8:30 with my friend Jenn and her husband. After the gym I sat down on my bed and apparently fell asleep, missing an essential phone call from Jenn about the time of the dinner. Weird.
Today is basically the deadline for signing up for doula training this coming weekend and I have certainly taken my sweet time about registering. Part of the reticence is financial: We just received a company-wide pay cut and now, after 2.5 years with the same company, I’m making 46 cents more than when I first started here. Jenn, who is working on her master’s in public administration, compared it to grad school — there’s never really a great time for it. I explained my hesitance to go for it to Jenn as being largely emotional (due to potential TTC bitterness), and that is true to an extent … except that, when talking with my 8-months-pregnant coworker who also has endo, she let me feel the fundus and feel her daughter as she rolled in her stomach, beneath my hands. And I walked away so excited, knowing that this was a field for me.
I kept that feeling close to me as I paid for the classes online and will continue to remember why I’m enrolling: for women’s choice in healthcare, as well as to give myself a better future as I better other women’s experiences.
Birthing babies, starting Friday morning!
