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


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#TBT to the first time I published my #endostory

I recently had to clean out my desk and pack up 10 years of memories and collectibles (and, let’s be honest, papers and condiments and dusty old fortunes). Among my discoveries: the long-lost copies of H Magazine from 2009, in which I lay out my excruciating and embarrassing first emergency room visit for extreme pelvic pain and heavy bleeding, describe some of the more graphic details of life with endometriosis for all my coworkers to read, and required our senior Graphics Editor to make a graphic of what endometriosis and adhesions look like. (Sorry not sorry, Steve.)

The story took a big edit and you can’t even find it online any more, since the magazine is no longer in print, but I was still happy — and maybe a little strangely nostalgic — to find these copies and to know they haven’t been totally lost and forgotten. I’d love to take another crack at this and rewrite this article, to update the facts and improve the prose. Maybe now that my schedule has “opened up,” as they say, I’ll have both the time and resolve to do so.

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Happy Endo March all around the world!

Wishing everybody marching for endometriosis awareness a happy, productive, and pain-free weekend! I love seeing the photos from all around the world as I’m perched on my spot on the couch, heating pad on high and little dog laying bored next to me. Keep ’em coming — wish I was with you! (All of you — I attended the original Washington, D.C., march, and who wouldn’t want to march in Scotland or France or South Africa or Canada!)

We’d love to see your favorite photos from your local endo march. Post them to the new official Endo Sucks! Facebook page, and you could see them featured on the Endo Sucks! social media! Be sure to include where you’re from and who you’re marching for.

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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.