A place for endometriosis survivors & supporters, and all that goes with it.


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Go out and grab…

My mom’s quote of the day


My mother’s kick-in-the-pants, go-out-and-do-great-things-because-you’re-awesome, inspiring words of the day. So good it deserved to be made with sparkly text.

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Update on the little man

This is a follow-up to a post I made recently, detailing some health issues with my dog, Pippin.

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On one recent Sunday, I took Pippin to work. He’s the best in the biz.

Long story short: NO SURGERY FOR THE SMALL DOG! The ultrasound shows a nodule on his pancreas, and some of his organs were a bit enlarged, but there’s no cancer, no foreign object stuck in his gut, and absolutely no need for surgery, as the first vet had pressed so firmly into my brain.

Basically, his big tummy was full of air and food that was fermenting, which was the culprit in his gastro issues. He’s a small dog that’s getting older and the high-fiber vet food just wasn’t right for him. I put him on soft food of a different brand for a bit, but when that didn’t stop the gastrointestinal distress, we put him on the tried-and-true diet for doggy diarrhea: chicken and rice. He’s been eating it since with only one short-lived gastro issue over the weekend when we relented and gave him a bite of egg white.

No more panting all night like a cow in labor. No more shitting himself. No more tear-inducing farts that wake us up out of a dead sleep in the middle of the night.

My dog did not have cancer. My dog had to take a shit and change his diet. THANKS, VET NO. 1, FOR THE PANIC. I guess doctors of all shades can be total dipshits.

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Ups, downs and the timing of the universe

The universe giveth, the universe taketh away and says “No no no, not in my house!”

After weeping my way through four hours Friday of trying on dresses (and walking away empty-handed) for an Easter brunch that ended up canceled by Saturday morning, my uncle shows up with a big basket of Jacksonville delight: Peterbrooke chocolates.

So much chocolate ... plus a yellow stuffed bunny. Mom gave up her white chocolate rabbit; her loss!

So much chocolate … plus a yellow stuffed bunny. Mom gave up her white chocolate rabbit; her loss!

Oh my. Among the bounty: chocolate covered potato chips; white chocolate covered Oreos; chocolate dipped pretzels; and of course, Peeps. In chocolate. Peterbrooke is the best. I always give their chocolate covered popcorn as gifts and — wait, why no chocolate covered popcorn in there?! Party foul, Peterbrooke, but know you are so easily forgiven.

This was the most amazing timing, as my Aunt had decided to come to visit about an hour before this basket arrived. You know, my favorite Aunt — and yours — Aunt Flo.

This is the first time the universe has ever sent me a gift basket. Never mind the whole chocolate-period cliche, I’ll take it. Hopefully I can eat some of it once I stop feeling nauseous. Stupid endo.

To complicate things, my mom and I just ordered a delightful set of meals from Jacksonville’s beloved Metro Diner as our Easter brunch and dinner (I still have to go to work, unfortunately). We’re talking poundcake french toast, bacon, lox & bagel, and the best grilled cheese on sourdough ever. EVER.

But as I was getting ready to go with her, my body decided that kick-in-the-head migraine you woke up with isn’t enough. No, the universe punched me in the gut, made me throw up all the water in my stomach, and I think it may have stolen my credit card.

My mom came running in all panicked but I’m sorry, this is what goes with the territory — not always, just when you need it least.

She went to get the food alone. Sorry, mom.

Off to wash colored dishes for the Easterland patio. I’ll post pictures later. My mom did a great job out there.

A merry pagan ova day to you all! Hoping for the ripping pains in my gut will subside and all will be well.


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The 2013 Endo Challenge: A prep for Endometriosis Awareness Month

Holy hell, folks.

It’s the end of February. Which means it’s almost March. Which means (you maybe guessed it): Endometriosis Awareness Month is here again!

It’s a celebration of US, y’all. (Found on Google Images using Creative Commons license filter)

In previous years, I’ve tried to blog every single day for Endo Month. Sometimes that’s worked really well; other years, not so much (i.e. I’m still trying to get over the fact that I abandoned ship in the middle of the month in 2012 after a traumatic gyno visit, about which I *still* have yet to talk to anyone about).

This year, I’m going to take a different approach that I think we all will enjoy: More articles, more reblogs from other awesome endo folks, more photos – maybe not every day, but certainly no blogging famine either.

And in that spirit, I present to you a challenge. THE 2013 ENDO CHALLENGE, to be specific.

Here’s what I want from participants in the Endo Challenge: Set a goal, know why you’re setting it, and then go ahead and do it. Blog about it, tweet about it, post it in the Endo Sucks! group, email me about it — however you want to communicate it so we can share together.

For example, my first Endo Challenge for myself: NO MORE SODA. No sugary drinks, no sugar-free drinks. I don’t know how many more articles and charts and studies I have to see before I give up the ghost and admit the negative effects my caffeinated indulgence can have: cellular damage, the terrible effects it can have on metabolic rates and sugar spikes, inflammation, the unsavory effect it has on your teeth …. UGH. As the many 2-liter bottles around my desk can attest, we drink way too much of it, even if I work a night job. I’ve given it up before, I’ll survive. I’ll just have to take up Water Joe again when I really want caffeine!

I’ll start there, but how will you challenge yourself this month? Here’s a few ideas from the top of my head:

* Start a positivity journal. Write down something good that’s happened to you every day, to remind you that you are living a life, not just a life with endometriosis.

* Participate in a local endometriosis awareness event. For example, The Great Endo Balloon Race 2013 is a way for endo survivors worldwide to pick a day to hand out yellow balloons to strangers, doctors offices, hospitals — pretty much anywhere — and attach information about endometriosis to it, as much or as little as you like — a definition and a URL of an endo blog or a group like the Endometriosis Research Center, the is a good place to start. They also have tips on more eco-friendly balloon choices and other ideas. Join the group and tell them Endo Sucks! sent you! :D There’s also races, meet-ups, the endo quilt — possibilities abound!

* Get in touch with an endo group. Most countries have endometriosis associations; just check out how many I follow on Twitter or what groups have pages on Facebook, or just Google it! Don’t have one? Consider starting one. Small steps lead to great journeys. The ERC is one; other places to start include the Endometriosis Foundation of America and Endometriosis.org.

* Make a change. Change your exercise routine. Start an exercise routine. Eliminate known food triggers from your diet and see how you feel. Drink more water. Eat less gluten. Again, it’s amazingly up to you. Be sure to give diet changes at least two weeks to judge their efficacy and change one food at a time so you know exactly which food is or isn’t helping.

* Talk it out. Make time for this. Talk to your mom and ask her about her experiences. Talk to your friends and make them know that they need to meet you a little more than halfway when it comes to what you can and can’t do with endo. Talk to your partner and gently explain how you feel and what you need from them when you have an Endo Day. Post to the Endo Sucks! group. Talk to a counselor. Unburdening yourself and educating others is a great way to find support you may never have known was there. Don’t be afraid to ask for what you need!

* Do your research. Did you know many women with endo also have Interstitial Cystitis, and some of your pelvic pain may actually be bladder pain? Did you know the company that makes Mirena is coming out with a smaller IUD called Skyla that is supposed to be better tolerated by women who’ve never had children, and can help with adenomyosis pain? Challenge what you think you know about endometriosis and related conditions, and know that doctors work for YOU — you have the DUTY to ask as many questions as possible and explore every avenue of treatment.

* Ask your job for Intermittent FMLA. This is something I believe every single working woman should do. The Family Medical Leave Act offers Americans specific, paid protections of their job when it comes to surgery, chronic conditions, maternity leave and caring for others — but they may not come out and say “Hey, did you know you can fill out the FMLA form, get Intermittent FMLA, and have your much-needed endo days at home paid 50 percent by FMLA and 50 percent by your paid time off?” My job didn’t. You don’t have to tell them WHY you need an Intermittent FMLA form — just sit down and ask for one. You’ll need your doctor to sign off on it, but it is SO worth it. (A guest blog is coming soon on this topic!)

* Take time for you. Dare to take good care of yourself. Get a massage. Don’t get out of yoga pants all day if you don’t feel like it. Treat yourself to a movie. Learn to make a new favorite meal. DO FOR YOU and don’t take no crap from nobody.

That’s what I can think of for now. Leave me a comment and tell me what YOUR 2013 Endo Challenge will be — and if you have a blog about it, please link to it in the comments!


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In truths that she learned, or in times that he cried

So how do you measure a year?

This is one of everybody’s favorite songs from RENT, “Seasons of Love.” I was and am a giant RENThead and was able to introduce the movie to Phil on Christmas Eve. Not as grand as the stage version, but I’d actually forgotten just how powerful it is. And it always strikes me extra hard that the writer, Jonathan Larson, never even got to see just how far his story would reach into the world: He died of a heart problem the night of RENT’s final dress rehearsal, the result of his until-then-unknown Marfan’s Syndrome.

Here’s the video I meant to post for the New Year (see previous entry as to why it was delayed). I chose this one over one from the movie because it’s more full and is the original Broadway cast (OBC) version. There’s plenty of videos online if you want to see it sung by the actors; it’s moving.

Lyrics:
ALL
Five hundred twenty-five thousand
Six hundred minutes,
Five hundred twenty-five thousand
Moments so dear.
Five hundred twenty-five thousand
Six hundred minutes
How do you measure, measure a year?

In daylights, in sunsets, in midnights
In cups of coffee
In inches, in miles, in laughter, in strife.

In five hundred twenty-five thousand
Six hundred minutes
How do you measure
A year in the life?

How about love?
How about love?
How about love? Measure in love

Seasons of love. Seasons of love

JOANNE
Five hundred twenty-five thousand
Six hundred minutes!
Five hundred twenty-five thousand
Journeys to plan.

Five hundred twenty-five thousand
Six hundred minutes
How do you measure the life
Of a woman or a man?

COLLINS
In truths that she learned,
Or in times that he cried.
In bridges he burned,
Or the way that she died.

ALL
It’s time now to sing out,
Though the story never ends
Let’s celebrate, remember a year in the life of friends
Remember the love!
Remember the love!
Seasons of love!

JOANNE(while ALL sing)
Oh you got to got to
Remember the love!
You know that love is a gift from up above
Share love, give love spread love
Measure measure your life in love.
Seasons of love, seasons of love


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Pain in body and mind

It’s true I’ve been gone a little while.

In the last month, I’ve had a nerve conduction test and more MRIs to check for nerve damage and update my doctor and my understanding of the status of my Chiari malformation. I’ve worked on posts and saved them, complete with photos.

I wanted to tell you all about how I sucked up my pride and messaged a local infertility center, hoping to be seen and find out how my Last Ovary Standing is holding up these days.

I wanted to post photos from Hanukkah, Christmas and New Year’s Eve that were inspirational or at least a “hello” to you all.

Instead, my status as of midnight NYE — what I always considered the most romantic night of the year — brought a very painful end to my 3 year relationship with my boyfriend, the best endo supporter I could have asked for. We lived together for nearly the entirety of our partnership, and now, moving out … I mean, holy shit, how do you dismantle a life? It would be easier if we hated each other; we don’t. We care deeply for each other and had plans for a future. The only thing I’m happy about is that he’s going to seek out what he needs and that I helped open the lines of communication between him and his family in the process.

Not that it makes a difference to the pain of separation. It doesn’t matter if you knew it was coming for months or it caught you by surprise, it’s not fun and it’s not easy.

Right now I’m staying at mom’s house, crying often, hiding in bed not eating (and eating femme stereotype foods like Ben & Jerry’s Phish Food ice cream when I do) and watching movies — favorites like “The Princess Bride” and “Alien.” And according to my Woman Pro Calendar app, I should have started menses on Thursday. I’ve had lots of signs (mostly cramps and pelvic ache and acne) but no Aunt Flo. This is not too surprising as stress will override everything, including your birth control, but it provides me no comfort, having the symptoms but no manifestation.

So if I disappoint with the updates in the New Year, I apologize. We all fight battles. Some are fought with a sword. Others are managed with a heating pad. And still others by letting yourself just be sad for a while.

Here’s to 2013 only getting better from here, every single day.


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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.