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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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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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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Endo Month, Day 16: ‘It’s always darkest before the dawn’

Got home late on Thursday night because I chose to fight the inclination to stay at home on my day off and went out with my mom and her co-worker, Angelique, for a cheap but grand wine tasting evening at a cozy local spot in San Marco called The Grotto. Five dollars for seven wines, not including the cost of the flatbreads and cheeses we ate. I’ll post more about it later today.

It was a definite toss-up on what to feature for my first post today, but in the end it came down to the following: It’s Friday, we need a power song, and I certainly need a power song as I head off to meet with a new doctor whose specialty is apparently endometriosis and is a minimally-invasive surgeon. So please keep me in your thoughts until I come back to you to share them.

I love Florence and the Machine, and this song is pure magic. It’s like soaring. I can feel something deep and dear puff up in my chest and I think of standing with pride and flying when I hear it. And it definitely speaks to what’s in us, calling on us to shake off the weight of the world. As the chorus says, “It’s hard to dance with a devil on your back/So shake him off.”

If I could have this song pumped into my ears when I need it the most, I’d definitely pay for that luxury.

So without further ado, here is “Shake It Out” by Florence and the Machine (lyrics below, some special ones bolded). A strong and beautiful day to you all.

Shake It Out” by Florence and the Machine
Regrets collect like old friends
Here to relive your darkest moments
I can see no way, I can see no way
And all of the ghouls come out to play

And every demon wants his pound of flesh
But I like to keep some things to myself
I like to keep my issues drawn
It’s always darkest before the dawn

And I’ve been a fool and I’ve been blind
I can never leave the past behind
I can see no way, I can see no way
I’m always dragging that horse around

All of his questions, such a mournful sound
Tonight I’m gonna bury that horse in the ground
So I like to keep my issues drawn
But it’s always darkest before the dawn

Shake it out, shake it out, shake it out, shake it out, ooh woaaah
Shake it out, shake it out, shake it out, shake it out, ooh woaaah

And it’s hard to dance with a devil on your back
So shake him off, oh woah

I am done with my graceless heart
So tonight I’m gonna cut it out and then restart
Cause I like to keep my issues drawn
It’s always darkest before the dawn

Shake it out, shake it out, shake it out, shake it out, ooh woaaah
Shake it out, shake it out, shake it out, shake it out, ooh woaaah

And it’s hard to dance with a devil on your back
So shake him off, oh woah

And given half the chance would I take any of it back
It’s a final mess but it’s left me so undone
It’s always darkest before the dawn

Oh woah, oh woah…

And I’m damned if I do and I’m damned if I don’t
So here’s to drinks in the dark at the end of my rope
And I’m ready to suffer and I’m ready to hope
It’s a shot in the dark and right at my throat
Cause looking for heaven, for the devil in me
Looking for heaven, for the devil in me
Well what the hell I’m gonna let it happen to me

Shake it out, shake it out, shake it out, shake it out, ooh woaaah
Shake it out, shake it out, shake it out, shake it out, ooh woaaah

And it’s hard to dance with a devil on your back
So shake him off, oh woah

Shake it out, shake it out, shake it out, shake it out, ooh woaaah
Shake it out, shake it out, shake it out, shake it out, ooh woaaah

And it’s hard to dance with a devil on your back
So shake him off, oh woah