19 August 2013

Chocolate Hobgoblins | Return of the Endometriomas

hospital pain chart, how to you measure pain
I feel like I'm breaking from the inside out. There is no other way to put it and pain is such a difficult thing to put into words. The nag champa is burning, so while it fills my home with its spicy fragrance and a kitten climbs purring in my lap I'll pull back the curtains and share a little about what has been going on inside of me.

Things are growing again. I have a history of ovarian cysts and endometriosis that began about 15 years ago. Most women have cysts; they appear at ovulation and then the body reabsorbs them. You never know they're there. But for some reason, some cysts decide to swell. ...and that's painful. The first time I thought my appendix had exploded which led to an ultrasound and all sorts of running around town. Movement makes them swell.

They'd measure them then send me home with pain killers, rinse, repeat. Over and over for years. Then I stopped going in for a few years drained from the ritual. Well, when the blinding pain became too much I snapped and went in and they did the whole ritual again but this time they thought they saw cancer.

I had to have surgery immediately; it was benign but it was scary. I had to sign all these papers saying that I understood that if it was cancer and it had spread they'd have to perform a hysterectomy. I went to sleep on crisp white sheets unsure of what I'd have left when the anesthesia cleared.

Now I'm embarrassed to say that until last week I'd remembered the surgery wrong. It had started out as a laparoscopic procedure but because of how bad things were in there it turned into a laparotomy. Similar words but the latter is much more invasive. I was out of work for two months, returned too soon, and wound up back in bed for another month. It was a long time. It drove me nuts to be laid up in pain after so much pain while springtime bloomed outside.

There is no guarantee that once they remove everything and deep clean my innards that it won't come back. I was pain free for about six months...but it was amazing.

When it returned it was brutal. I hemorrhaged from another endometrioma. That's what an ovarian cyst can turn into. They also refer to it as a chocolate cyst but that term is revolting to me. I like chocolate. I don't want to think of my hobgoblins as chocolate anything because right now the largest one is bigger than a grapefruit and the other is a measly lime. I knew it was getting bad but I didn't think it was that bad. Grapefruit is the biggest one I've had. Endometriomas don't get reabsorbed. They just hang out, growing and threatening to explode.

I'm like a bomb. Literally. I have gobgoblin chocolate-citrus bombs that could send me into hemorrhage-la-la morphine land at the slightest movement.

I noticed from the outside in that photo-op Brandon and I had done with Norman Reedus at ComicCon. When it was handed to us my eyes landed right there and I thought, ohh, you're back you little sneaks...I cannot ignore the doctor for much longer.

So I made an appointment and confirmed it all and have been going through the motions. Ultrasound, follow-up, pre-op, bloodwork, surgery on 27 August. Hopefully it will be as simple as possible and I'll get to be pain-free indefinitely. I have some other chronic pain issues but this is the ultimate monster.

When I hula hoop I pay for it. Take Tris to the park? Shop, walk, carry a package up the stairs, do that silly plank challenge going around Instagram...I pay for it all in silent agony. But that's life. Like with my frequent migraines I just have to push through. Life doesn't stop or even slow down so you have to push and make sure you keep up.

Chronic pain can leave you bitter - and yes, I have felt bitter. It isn't fair. It's sad and frustrating.

But I love life. I love energy. I want to take walks and take a million photos of every crack in the sidewalk. I want to learn that next hoop trick. I want to chase dogs with my toddler. I want to bend to his eye-level and share every wide-eyed discovery he shares with me. Before baby I went to the gym with my husband and did back extensions for fun even though it hurt inside my body. I rode my bicycle. I couldn't imagine why people would choose to walk when they could fly. I'd carry my bike up four flights of stairs, then back down again in the morning.

If it hurts to breathe, I hold my breath. If it hurts to move I turn into a statue and move as little as I can. It's a skilled motion - not creepy mime-like at all. Promise.

No, you'd never know.

Unless I told you.

Sometimes that's the biggest curse of all. I hurt, I'm in a lot of pain today, I can't do much more of this now - the words become static even to me. I'm not suffering silently. I whine to those I trust. I try to keep it a dull roar.

I wasn't going to write about this at all. I was just going to go through the marionette motions I've learned and hope this slipped by unnoticed. But my friend, The Giver of Stormborn, encouraged me to share. It's what I do, she's right. I always hope that by parting the smoke and mirrors that bloggers tend to keep someone might find comfort - someone who understands.

Go to the doctor if you're in pain.

The last time I blogged about this I helped at least one person go to the doctor. One person who desperately needed the encouragement.

You aren't alone. There are [too many] others coping in their own ways with their own stories...

My incense has burned out. I've written my 1000th word.

I'll keep you posted...and thank you for caring.

8 comments :

  1. I wish I had been brave and gone to the MD sooner with my ankle. I have this fear that X means something bad... now it's numb and my brain goes MS MS! Even though there's nothing to indicate anything more than a pinched nerve, so yeah, I have a nerve study scheduled. But I'm still scared anyway...

    Good luck! You'll do great, and I'm rooting for the best outcome!

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  2. I'm so sorry that you are in so much pain and I hope the recovery from this surgery is smoother.

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  3. I am super glad to hear you're going to be checked, too! Hiding for me has either led to something worse - or nothing at all but lots of stress and headaches. Good luck and thank you <3

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  4. you are right, you would never know by being around you. you sure do cover it up well. i hope this surgery gets rid of it for good so that you can go on and be the carefree, funloving person you are. i will do all that i can to help. xo

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  5. Be brave, Momma & never be afraid to do whatever it takes to keep yourself in tip-top condition for those men of yours!

    Praying for you!!

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  6. Shared words is how some of us came into your life (ahh... LiveJournal). While it's no magic cure to the awful things in life, writing and sharing about it can at least let others know what you're going through. And heck, maybe you'll give someone the push they need to do something necessary, like seeing a doctor.

    Steph, you're one of the strongest people I know... and it has nothing to do with the awful things you've endured. It's all about the fact that you have the strength to embrace joy every day, in spite of whatever is going on in you, around you, or in general. The fact that you make that choice every day gives me hope for the world, because no matter how bad it gets, I know that there's a ball of happiness radiating from you. Not because your life has been easy, but because happiness is always the best choice. May you have the strength to keep choosing that in the future.

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  7. [...] then I stopped writing. I have to be at the hospital at 10:22 a.m. tomorrow. I’m just hoping this takes care of things for[ever] a really long [...]

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