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.
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.
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.”
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!
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.
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.
Let me know what you think of the new look of the Endo Sucks! blog in the comments below!
Hopefully the change in theme will eliminate some of the problems people had with image sizes, but if you have any problems, please be sure to comment on the post in question.
Thanks for sticking with us since 2008 and our old format — which, I have found, isn’t even a theme offered by WordPress any more. Talk about vintage.
I waited all week to call and find out my anti mullerian hormone results — it was a crazy week at work and I didn’t want to add to the madness if the news was bad.
Good call.
I heard back from the fertility institute within an hour of calling today. And it seems my AMH level is poor … 1.4. The doctor is in Tallahassee and will call Monday to discuss plans/what this means, but they told me the number over the phone. Depending on which AMH scale they used, it’s either poor/low or basically menopausal. Waiting for the nurse to call back and clear that up.
I knew at 23 that my ovaries were starting to age; they could see it during surgery, but my reserve was good then. But I also had two ovaries still.
Did I miss my “chance” after all?
Am I a 30-year-old who blogs about this now?
They had these bracelets at the check-out desk at the fertility institute; I was upset when I saw it at first. Now I wish I had taken one. What I hope for … I’m still not sure.
I was going to go to the driving range, but now I’m feeling pretty dizzy … may be a day to stay home …
**UPDATE!** The nurse already called me back, and the scale they use is ng/mL. So my number for AMH is 1.4 ng/mL — not a 100 percent disaster, but still not good.
The nurse is of course careful to remind me that there are other factors at play as to what this might mean: my age (which is young!), previous infertility (facepalm), and the number of follicles he could see on my ultrasound without stimulation (it was about 4 when I saw this doc for the first time). But still … there’s a big difference between 1.4 at age 41 and a 1.4 at age 30.
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.
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.
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.
My story my struggles, my battle with Endometriosis,chronic pain,fibromyalgia and other illness that I go through. This is to educate support and share that we are not alone in this battle.I also have a support group on facebook(Endometriosis Support Group Peel) Please join :)
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