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


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Guilt over not participating in my own life (or at least Star Wars Weekend)

Can I just vent for a minute?

I am really getting down and sick of how unpredictable and uncontrolled my endo and adeno pain is. I am trying to live any sort of social life but end up just going to work, surviving, going home to sleep, and repeat. And I’m getting upset over ridiculous things. Tomorrow, for example, I have been dying to go to Star Wars Weekend at Disney in Orlando, especially since this is the last weekend of the year and Mark Hamill and Billy Dee Williams will be there. I have been talking it up and getting excited. Today, I wake up and I am beyond thrashed. Well, I say wake up, but I really mean “have several short naps from 3 a.m. to 2 p.m. and finally pour myself out of bed and stumble around the house like a zombie.” Hell, I’m still in pajamas right now! I haven’t even taken anything for pain, even though I’d like to! I am trying to work myself up to go out to have dinner at 7, I can hardly fathom getting on the road at 7 a.m. to spend the day in the heat in Orlando and drive back that night. And what about my pain management? I am back to rationing my meds each day, and the codeine I’m sorry to say is not really effective. It’s a difficult admission. So I have people here and in Orlando that know I *might* come, but I might not, and it affects not just me because there’s getting the dog cared for, and making sure I have clothes I can actually wear through the day, and staying comfortable. I just don’t know. I’m exhausted at the very thought. Another opportunity for fun, probably down the drain. Another year of planning to go, gone.

The pose on this statue by Rodin just cries Shame to me. Image found via Google Creative Commons.

Statue by Rodin, image found via Google Creative Commons.

I already had to decline the wedding invitation of a friend I’ve known for 20 years because I’d be in Chicagoland alone, and with as weird as my pain has been, I can’t risk being stuck in a hotel room or banquet hall and not able to get around, or not be able to wear pants, or swell up to pregnancy size. Or worse, being in total incoherent pain and not able to care for myself, or get back to my hotel, or having to explain myself to someone there, spending the money and not being able to go or drive safely, and and and … I just can’t risk it.

I know I get stuck in this cycle of making decisions based in a place of fear. But I feel like I’ve done a hell of a lot pushing through my pain, especially college and beyond. Now I feel like it is catching up to me. And I feel such extreme guilt over not being able to do participate in my own life. It can’t be healthy.

These aren’t the first events I’ve had to sacrifice in the name of endometriosis. I guess they won’t be the last. And that is infuriatingly sad.

I wish very much that I could just make decisions and go and do and not have a million “ifs” and items to tick off the list. Isn’t that what normal people do? They get to go and do things and not have their pain sitting on their shoulder (or anywhere else, for that matter), guiding their life experience? I can’t be the only one who feels like this.

Maybe I’m finally getting to a point of making that Very Difficult Decision.

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A staff meeting of bizarre levels, or The squeaky wheel gets the cold hard cash

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We just had a meeting with some of the upper brass about our revenue and numbers, which aren’t terrible. There was the usual spread of cookies, cupcakes and rugelach from Publix, and the added thrill of everyone receiving a blue ticket for a cash raffle after the meeting. When a reporter took the necessary step of asking if we’d ever see raises again, our President of Something Important began a long explanation which, after about seven words, you already know is too many to be a “yes.” So that hope is dashed for another quarter.

BUT IT GETS BETTER.

The raffle. Oh, that raffle. I have terrible luck with these things so I didn’t expect a prize. What I could not have expected is not only would the newsroom clean up — a coworker that left and came back as a part-timer won for the second time (the first was in December), a sports desker and a new reporter and wire chief took home some serious cash money (between $200 and $500 each) — but my raffle number was 620. Phil, sitting on my right, was 619 and won $100. Robert, sitting on my left, had a completely odd number series and won $100. The woman two rows ahead of us was 621 and she won $200. Even when they drew a few cash cards based on random employee ID numbers, I did not win. I was a little steamed as we walked out, having literally been surrounded by cash winners while we’re on deadline. So as we’re walking out, The President of Something Newsy — who was also the day’s gift-giver — was shaking hands and thanking people for coming. I shook his hand, and before I knew it, I was telling him “I had some bullshit luck today, and here is why.” (Yes, I used those words.) And I pointed out Phil, Scott, Andrew, Robert, the lady with No. 621. I was just expecting to get a laugh. Instead, this member of the Upper Brass pulled cash out of his pocket and tried to hand me a $20 bill as a consolation prize. I threw my hands up, being surprised and scared to take money from him. Ultimately he talked me into it, agreeing that I’d had some seriously crap luck today and I’d earned it. And I walked out of there with $20 that I feel weird about but now can’t return.

Now I’m working on a locator map for a new Greyhound station that will be my second graphic in print for this newspaper this weekend. Not bad, considering I only started official graphics training on Tuesday. However, I’ve been walking stiffly and hunched over the last few hours, my heating pad scalding the crap out of me, as I start on day one of a brand new birth control that I’ve been reminding my gyno about for over a week (and going without in the meantime). At least it was free. Thanks, Obama! Please find a way to make my uterus behave.

So what did you do at work today?


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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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Hello, lovers. Yes, it has been a little while since I have been here. I’ll be filling in the adventures and misadventures as we go.

But today poses a particular problem that I know is not unique to me:

Do I stay home or not stay home?

I took the day off for the post-wedding BBQ of a lady I have known since the third grade. We’ve been out of touch over the last year and a half, except for her text about getting engaged and receiving the invite, and any visits she’s planned to my town have been canceled at the last minute. Our job schedules have kept me from taking off time to go down there when she isn’t working. Her wedding was private and held yesterday; today is a casual event by the beach.

Yesterday I was home, on the couch with a heating pad and codeine just from the threat of my impending menses. Today it has arrived and my internal organs are wringing themselves out like a soaked Libman mop.

Suffice to say, two hours each way to an event where I only know the bride and groom is *not* sounding like what all the cool endometriosis is doing today.

So the boyfriend and I are torn between going to show our love & support, and staying here since I’m worse today and not looking forward to being crampy and cooped up.

The biggest motivator? It’s not necessarily the long-standing friendship; she doesn’t seem all that bothered if I don’t show up (I texted her last week to double check the date and she responded “if it’s too far, you don’t have to come”). It’s that I don’t want to feel like I’m missing out AGAIN.

I missed my college friends’ nuptials in May because of a lung infection. I missed the wedding of a 16-year friend because of last-minute training for my job that never even happened. Am I really going to skip even this because of endo?

Is it prideful to go, or prudent? Is it smarter to stay home or suck it up?

Along with “Why me?”, this is the eternal dilemma of the chronic pain patient: Do I stay or do I go.

Neither is a winner.

*AMENDMENT: After further review and discussion, we found that the drive to the venue is 3.5 hours each way. No, just not possible. Endometriosis, serial killer of joy.*


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The Red Menace & the Baby Bait-n-Switch

The Red Menace is coming for you!

Has this ever happened to you?

You’re minding your business, trying to enjoy life mid-cycle, when weird symptoms hit.

You’re nauseated.
Your breasts hurt.
You have pelvic aches and pulls.

It starts lightly at first, and you think, “OK, my body waited ’til my mid-20s to participate in PMS, but here it is.”

It goes on for a few days.

Then you’re sick in the morning. And it goes on for more days. And a few more.

Then it’s two weeks of nausea, headaches, pain, peeing constantly … but no cycle. And suddenly those little barbs to the boyfriend about “maybe I’m pregnant” just aren’t funny any more. Because god damn, what if you are pregnant?

You go back and forth about how to respond. “This has happened before,” you say. “YOU ARE KNOCKED UP” your body says. “My cycle is irregular anyway, I shouldn’t worry about being a few days off my expected Day 1,” you say. “HELLO, YOU’RE PREGGO!” says the soreness. And so on.

JESUS CHRIST IS IT PREGNANT OR NOT PREGNANT ALREADY!?

After two weeks or so of late cycle, pain and sickness, you’re convinced that you are pregnant. Surely you must be. But you’re not. Right? You’ve charted everything. It’s physically impossible. But it could be possible. Right? Or not?

ANSWERS PEOPLE I NEED ANSWERS

So you finally take a pregnancy test. You count the seconds out loud, and watch your phone’s clock anxiously. Thirty seconds turns into three minutes turns into eternity.

And guess who’s pregnant? Continue reading


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Day 31: Tie a yellow ribbon

three important ribbons

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–