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!

“I can be changed by what happens to me, but I refuse to be reduced by it.” Maya Angelou

“I can be changed by what happens to me, but I refuse to be reduced by it.” Maya Angelou

via “I can be changed by what happens to me, but I refuse to be reduced by it.” Maya Angelou.

Found this from new follower No Ruff Days. Awesome quote, and if you’re in the mood to smile about dogs, this is the site for you! Can’t imagine ever putting highlights in my dog’s fur though…

Endo Month, Day 11: Take a little advice from Bruce Lee

Live your life and, if you happen to have some down time in that life span, watch the documentary “I am Bruce Lee” — it is awesome and so was he.

Endo Month, Day 9: Faces of endometriosis

I found this video on the blog Mud and Lotus the other day. It has some nice facts and photos of women who go suffer endometriosis.

Some of the surgery photos gave me the heebies. It also brought me fresh back to when I had my third laparoscopy in 2010. I bought a digital camcorder special for the event, planning on making a video about my experience. I ended up being so miserable and feeling so disgusting that I kept telling my mom and boyfriend not to use it, thus losing any possible contribution I might have made with it. Unless I have a fourth surgery of course, which is entirely possible.

It brought me fresh back to the terrible experiences of surgery and particularly this last one; I had a fever going in after having a serious reaction to my bowel prep, serious enough to land me in the emergency room of the hospital where I was due to arrive for pre-op a few hours later. My surgeon was not informed of this, even though the nurses told *me* he was. I developed an infection during the surgery and what should have been a day-procedure turned into about 5 days in the hospital … and they housed me in Maternity. MATERNITY. Insult, meet Injury.

So I spent days feeling dizzy from pain meds and burning from fever, walking the halls hand-in-hand with my boyfriend with my air-swollen tummy telling lies about me. Women in active labor would pass me and give me a nod, as if we were in the same situation and ‘hang in there’. Every night, often twice or more, nurses would barge into my room, frantic, throwing on the lights and demanding to know where my baby was and where was my husband? They took my blood every day and every time they congratulated me on being a mom. And on my last day, the head nurse (Nurse Wratched, as I called her) tried to send me home sans pain medication, leading to a yelling match with the other caretakers outside my door.

Going back to that — and to the way I felt in the photo below — makes my stomach drop. I don’t want to play this game any more.

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 photo project – volunteers needed

If you have nice looking hands with nicely manicured fingernails, are a guy interested in spreading endometriosis awareness and support, and/or your partner is interested in doing a hand photo series, please email me at endosucks@gmail.com. I am hoping to do some (unpaid) photos for <a href=”on.fb.me/endosucks”>Endo Sucks!</a> and Endometriosis Awareness Month. Anybody who wants to can do the photos; either I will send you an email on what I want (harder) or take the photos myself if you are in the Northeast Florida area.

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.

Endometriosis Month, Day 3: Double photo love

Today’s post is a little later than originally planned because I’m back at work, but it’s totally worth it.

I present to you my niece Pepper and nephew Jerry. Pepper and her little brother are the children of my friend Alex, whom I’ve been friends with since the third grade, and his wife Nora. They live in her home country of Germany now, but have sent photos of the kids in yellow whenever I’ve asked.

*Nora wants us to know that Pepper is fine, just wearing a little left-over face paint marks.

I love them so much, and I haven’t even met them beyond Skype — something which I will remedy when we all meet up in our hometown this spring.

Keep wearing your yellow, and keep sending in photos! Tweet them, post them in Endo Sucks!, and email them to endosucks@gmail.com!

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.

Endo Month 2012: Productive Day No. 1

Keeping with tradition, here are the annual portraits for Endo Sucks!:

My portrait:

‘Sup. How do you like the ginger hair?

And me with my boyfriend, Phil:

I’ve received some really awesome photos on Facebook, and I can’t wait to share them with you! You can see them for yourself in the Endo Sucks! group on Facebook, and I will be pacing myself and posting one or two every day. Which is going to be difficult, because they are sooo good. Think “niece and nephew under age four being super sweet in yellow shirts” and “old friend PhotoShopping in a yellow shirt because he doesn’t own one” sort of stuff.

Since it was my day off and the first day of Endometriosis Awareness Month, I made sure I was productive and in theme by starting the day with a gyno exam. Oh the humanity. At least my boyfriend took me to lunch afterward! And since we were in the neighborhood of our job, I went with him to work and foisted a few yellow ribbons on my coworkers and planted the idea of wearing yellow items next week to show support. Called a friend who works downtown out of the blue and met her for baklava and a quick chat, then off to grab some more ribbon and some chicken to have dinner with my mom, who certainly remembers what it was like to have endometriosis. We watched Ghost Adventures, talked about work madness and made a mound of yellow ribbons for us to hand out.

If Gmail and Verizon weren’t being knobs right now, you’d see a photo of a mound of yellow ribbons. Later, I hope.

I also participated in my first Twitter chat by following <a href=www.twitter.com/endochat" @Endochat and #endochat to send and receive many messages from other endo sisters, which was a little befuddling to follow but ultimately very cool. Apparently there will be another EndoChat next Thursday evening, so watch this space for more information or follow me @endosucks.

And to round out the night, I think the boy and I will settle in to catch me up on a few episodes of “Game of Thrones” (definitely needs a trigger warning but I still like it so far) before calling it an early night. More punishment on the lady bits tomorrow: waking up way too early for waxing. Then going rock climbing. Good god y’all.

Don’t forget to send in your yellow-wearing photos to endosucks@gmail.com and post them in the Endo Sucks! group. Maybe you’ll see your pretty mug in this space!