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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This is what you call “not helping your case”

Some interesting screengrabs of Tweets from Drew Pinsky, his wife Susan, and the ditch they are digging themselves into more and more today with terrible handling of Pinsky’s misguided (at best) comments about endometriosis and IC during the Loveline show on Thursday night.

Apparently the situation at hand may be discussed on his show on Monday, April 28. We shall see. Even if it is, Susan Pinsky makes it sound like we’re in for another shit sandwich.

To follow what’s going on, you don’t even need to have a Twitter account. Mine is twitter.com/endosucks (or @endosucks if you do have an account). Drew Pinsky is @drdrew, @loveline and @drdrewHLN (yes, he’s on CNN too), though he does also have others (like for the podcast). Susan Pinsky is @firstladyoflove.

If you want to respond, tweet at these accounts, and/or use the trending term #educatedrdrew.

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And then this treasure happened. Why would Dr. Drew love something sent out by a dietician who specifically deals with IC, a disease he believes has no genuine pathology? HMMMM. My response is below; for some reason, it isn’t showing up on his feed any more.

Patriarchy like whoa.

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The battle for the orange bottle continues

English: This is a picture of a Walgreens pres...

This is a picture of a Walgreens prescription bottle. It is not mine. Personal information about the patient is censored. (Photo credit: Wikipedia commons)

If it’s not one thing, it’s another!Ladies and gents, always remember that YOU are your own best advocate and you must be diligent when it comes to your health care. I called Walgreens’ automated service this evening to check the status of my refill orders. I’m glad I did before I got there, because I was surprised/pissed to find they were trying to charge me $160 for FOUR (1-2-3-4) Relpax pills for migraine. Thankfully the fix came easy this time: I called the pharmacy and found that, for some bizarre reason, they had run it through some random coupon program and not my insurance, causing it to be rejected. But I was assured that it will be its usual $10 when I pick it up tonight.

Sadly, this is not the first time for me or for any of you, and it will not be the last. While I know Walgreens staff are humans too, I can’t tell you how many times I’ve had to fix something with them. They fill the wrong med even though I use the automated system and enter the prescription number myself. They don’t send refill requests. They give me someone else’s medicine and give mine away. They’ve asked me out loud, in front of other customers, why I’m taking birth control. And they frequently run medications incorrectly so that insurance at first doesn’t cover it until I tell them, ask them, fight them, beg them to re-run it.

Not that  insurance is innocent: They’ve put up more than a few fusses and tried to charge more or refuse coverage on different medications, but will pull back and charge the co-pay amount when I’ve pushed back. You never accept a first offer, and you must never be afraid to push back for what you need or when you know something is not right — and even if you don’t know for sure, you ask, question, verify. Don’t just trust that everyone is doing their job to a T; make sure of it.

Your time, money and health are yours, and they are precious. Live it and love it.


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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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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?


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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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You know your gyno is frustrated when …

.. You write “want to discuss BC” on your forms for your gyne annual, and when she comes in she’s wincing and saying “Do we *REALLY* have to talk about your birth control? Nothing has worked for you!”

Lucky for her I just wanted to remind her of the new birth controls I now receive for free (thanks, healthcare overhaul). Also lucky for her, I didn’t kick her in the ovary.

To be fair, she’s been my doc for years, and we have literally tried every. single. thing. Every pill, shot, insertion has been exhausted either before I got there or under her care, except for pregnancy (a fallacy!) or hysterectomy. It’s monumentally frustrating that not one thing has given me the promised relief of alleviating my period entirely, which I made very clear to her at this visit.

But it’s also very frustrating and insulting to be actively told you’re “that patient.”  That difficult one. It ain’t so easy on this side of the stirrups either, sweetheart.

Just a flamingly ignorant comment from an otherwise very supportive physician.