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


Leave a comment

Pro tip: What not to drink for your ultrasound prep

So I chugged this 33.8 fl oz bottle of caffeinated water (my beloved Water Joe) to be ready and “full” for ultrasound. Wait an hour past my appointment. First thing the tech says when I get called back: “Use the bathroom and empty your bladder. The internal pictures were much better last time so I’m just going to do those.”

20140611-123021-45021413.jpg

All that delightful Water Joe for nothing, on an empty stomach. That’s 120mg of caffeine, equal to two cups of coffee, or two espresso shots. It doesn’t sound *so* bad, but my thumb is shaking as I tap out this post. I can feel my eyes are HUGE, almost pie-eyed, and there’s an odd pressure in my head. Oddly, I do not feel any more awake. In fact, I’ve been yawning through my heart flutters.

I do still have to pee.

DEAR GOD I’VE MADE A TERRIBLE MISTAKE

Live and learn … At least the good news today is that my 3.6cm cyst is now 2.5, so no cyst removal for me!


3 Comments

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.


1 Comment

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.


3 Comments

Update on the little man

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

Image

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.

Continue reading


5 Comments

Insomnia is inhumane

So it’s after 5 a.m. again, I need to be at work around noon (good luck to me!), and here I am screwing around on the internet. What is with this insomnia? I know a few things might be stress from work (such as not liking a new project they have me writing, or having to do the design for A1 during a high-news time as it was on Monday with the Boston Marathon). Another is this cot is not the most comfortable and it’s humid. (Good god, Florida, please stop.)

Most likely, though, is my mind. It doesn’t shut up. EVER. I lay down for sleep, I’m exhausted, the dog is snoring his tiny maltese butt off, and my brain suddenly develops Tourette’s and keeps reminding me of the reasons *why* I’m on this cot, and what happened That Night, and weren’t the explosions awful, and you totally let your friend down, and couldn’t you just hurry and find an apartment, and Jesus all the shit that goes with boxing up a life and moving from a house to your mom’s house to fully into a new place, and can you afford that anyway, and are you going to visit New Zealand before you’re 30, and holy fuck you’re going to be 30 in October, and where are all these friends that are supposed to help you celebrate a milestone year because I don’t see any around …

Yeah, that’s just me doing stream-of-consciousness and listing a few of the things on my mind right this minute.

I’m going to attempt to slay insomnia now. What do you do to get rest when rest won’t come easy?


3 Comments

Staying home: Damned if you do, damned if you don’t

AH, MONDAY.

Fuck you.

Normally I would have already been at work (my days off are Thursday and Friday), but I took Sunday off for the wedding party (which I missed) and Saturday off because of how I was feeling (and because it was already on the books, for some reason).

Last night the pain was bad enough that I was using the down-on-all-fours labor position, breathing through it and getting light-headed. I took a pregnancy test to rule out ectopic pregnancy (negative), and decided to call the gyne today if it continued.

So while I’m able to be a mostly upright human being today, my head is splitting open and I am unsure of how bad things may get today. I can already feel that bone-deep pain creeping down my legs, so my guess is “not awesome”.

And there’s a presidential debate tonight, so I know I’m going to want to fall over before the night is through.

And then, what should be a ray of hope: Boyfriend has mistakenly been given today off. Boyfriend offers to work my shift so I can stay home on FMLA.

Problem, you say? What problem?

Well, there’s guilt: we are beyond short staffed at work and can use everyone. Plus, why should he have to cover me because I have cramps? And I feel like I’ve abandoned the rest of the crew.

There’s fear and shame: Last week was so bad I tried to stand up to talk to a boss and almost fell over. This prompted many questions on his part that I was flustered, and I could have dodged but decided “oh fuck it” and told him the truth. Then he looked flustered. And I am afraid of getting so bad, like I used to, that I have to be taken home, or have people asking me all the time what’s going on and looking and feeling like shit at work, where I am supposed to be strong and indifferent.

So where does it stand? I’ll probably post this, and then get in the shower and go to work, like a good little soldier. Don’t expect me to dress nice, though.

What about you? What does it take for you to stay home or back out of events? How do you feel about it?


Leave a comment >

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.*