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


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*UPDATED* I sold a bracelet and I’m pretty psyched

Behold, a garnet and silver stardust bracelet on elastic, made for the 8th birthday of one of my coworkers’ daughters:

Natural garnet and silver-plate stardust beads on elastic, y'all.

Natural garnet and silver-plate stardust beads on elastic, y’all.

My first bracelet sold since I was in college! I’m so proud. Hope she likes it! Happy birthday, Emma!

Email me or leave a comment if you want your very own pure gemstone goodness. :)

**UPDATE** From my coworker: “Emma loved the bracelet. She put in on immediately and kissed it and has not taken it off. … Dad did good and you helped. Way to go.” SO CUTE!**


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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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The buttonhooks are back.

English: Buttonhooks with handles made of horn...

English: Buttonhooks with handles made of horn and wood, on display at Bedford Museum. (Photo credit: Wikipedia)

 

These, my lovers, are buttonhooks. These sharp little bastards were used to help cinch buttons into the buttonholes of button-up shoes, naturally.

And for several weeks, the little demon in my pelvis has been using one to get my attention at most inopportune times. Like at work. Or home. Or sleeping. Or just trying to pee. I usually describe my pains to physicians and friends alike as like buttonhooks pulling my insides apart. (I blame the move “Sybil” for working this imagery into my psyche when I was 16.)

And sisters, the buttonhooks are decidedly back.

This is how I felt constantly before my third laparoscopy: lots of ripping and stabbing, sudden sharp tears of pain that moved quickly from the left to right side, or punctured through the right of my pelvis down through the cervix. You ever been punched in the cervix? Probably not, but most endo sisters are going to know what I mean. Guys, try to imagine one of those long slender metal knitting needles being used to get a really bitching penile piercing, except it’s sliding up your urethra.

Yeah. That.

At the end of February I had a pain spell that knocked the hell out of me. I suddenly lost focus of vision, had ripping, dragging pain from left to right in my pelvis, and couldn’t catch my breath — if I breathed in more than a shallow pant, it hurt like hell under my ribs. I suddenly burst into tears, unable to deal with the shock and terrible feelings. I ended up lying on the floor for a good 40 minutes while the waves of pain increased and then gently floated away. I was glad to not be alone, and Phil talked me through it — mostly he was on the internet, asking my symptoms and entering them into a WebMD symptom checker. After each inquiry, he’d tell me the online remedy was “go to the hospital.”

“Try another one,” I’d reply. I’m not going to the hospital unless I damn well need to. Not only do they not deserve any more of my money, but all they’ll do is keep me cold and braless for 6 hours, take an ultrasound or maybe an MRI if they feel adventurous, and send me home with the classification “unknown cause, please follow up.”

Even just tonight I walked to the bathroom here at work. By the time I got there I was gasping — the knitting-needle-to-the-cervix pain left me breathless and sweating. And the damn things go as quickly as they arrive, so had anybody walked in as I was regaining composure, it would have been a bizarre scene indeed.

I know that my intestines aren’t that happy with me. More pain meds mean more constipation mean more pain — you can’t get around it. And my wonky overtime schedule this week has mean I’m neglecting the awesome essential oils I was given that actually seemed to start to make a gentle difference in my stomach situation.

But what can’t be denied is that I’ve been here before. I was a crumpled mess before my last lap (just go back a few pages, you’ll see) and when they went in — DAMN. Massive endometrioma in the right ovary which was stuck to the uterus and that whole clump stuck to the pelvic wall; the left sigmoid colon stuck to itself and the pelvic wall; endo on the bladder, the uterus, and knotting my ureters together (AGAIN) and for the first time, endo in the cul-de-sac and the diagnosis of adenomyosis.

And I knew I was in pain. I was blacking out from it, even behind the wheel. I was going two weeks with no BM (as I have recently, and it is NOT fun). I was weeping and narcotic drunk and not functional. And it STILL took 4 years, three doctors and a third surgery for anyone to believe it could be “that bad.”

I can’t wait that long this time. Nobody should. I may have exhausted my resources locally, but that doesn’t mean I will let my body suffer. I have one ovary left and it is mine, endo can’t have it, and my life is mine, endo can’t have it.

So I guess it may be time to travel again. You know, I’ve never been to New York City …


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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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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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Is anybody out there?

So many times it can feel like we are shouting into an endless, deaf void, one where not even our own voice can return to us. But other times we realize that our shouts are in fact hitting even a few chords. And those chords shake the ones near them, which affects the ones tied to those, and even with small movements we are making a movement.

Which is why I have a love-hate obsession with the stats tab of the WordPress dashboard. Today, for example, this blog was mostly read in the United States. But it also made movements in Canada, Ireland, Hungary, New Zealand and Indonesia. How about that! I love to see where people are reading this blog, and hope that they are getting useful information and connection out of it, especially when so much could be lost in translation.

And in another gift from the universe, I’ve been asked to write a guest blog on another endometriosis site about FMLA and our rights in the workplace. Score! It makes me feel like a welcome member of the community with something valuable to say. And it happens that I am working on getting even more information on this subject right now, so look for that very soon.

Is there anybody out there? Absolutely. Even if you don’t get the echo back or feel the reverberations, your voice is making movements with someone, somewhere.


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Taking Endo Sucks! around the world

One of the coolest features about WordPress is the stats page, where it tells you how many view you’ve had, what the most popular postings are, etc., but the best one ever has recently been added: A map that shows you where in the world your readers are. And not in a creepy Google-Earth-caught-me-mowing-my-yard-on-street-view way. It’s a holy-hell-i’m-really-reaching-people way.

Some of the countries that have shown up on my map for the last seven days, besides the U.S.:
* United Kingdom
* Canada
* Puerto Rico
* Malta
* South Africa
* Japan
* Brazil
* Saudi Arabia
* Sweden
* Barbados
* Colombia

Are you kidding me? People in Malta and Barbados stumbled on my blog? How freaking great is that!

If you are here and want to rep your country (including you, my fellow Americans), by all means leave a comment and tell me how you got here. Even if you don’t follow this blog (and you should totally subscribe and follow me). Even if you got here on accident. I am so glad to have you here. Yes, YOU. Please visit again and let me know about you. Because I want MORE. I want lots of people reading in dozens of countries, and I want you to tell me how to get there.

Side note: This also lets me know who *isn’t* reading the blog, and since I have a considerable number of friends scattered around the world — Germany, India, New Zealand, Bermuda, the Bahamas, etc. — this means I know you’re not dropping by the blog. FOR SHAME. Technology being used for both information and punishment; you gotta love it!