Monday, September 3, 2012

Peeing standing up should be an Olympic sport

This post is not my usual  "she so crazy" bullshit post. For now I am just going to bitch. I haven't even edited it. Feel free to skip this one.

"Max is having a snack of peanut butter and apples. I'm going to go outside and work in the garden." Sam stood in the doorway of the bedroom at noon on a beautiful Saturday.

That all sounded so nice. I was starving. And desperate to get out in the sunshine.

"Do you need anything?"

I lay with my back facing him in a darkened room, curled into a "c" shape, with a pillow between my knees. "No, thanks." I tried to roll over to look at him and smile, but the pain took my breath away. I tried frantically to roll back to that last position as I gasped audibly, shifting my weight almost imperceptibly as my muscles clenched involuntarily. I wouldn't have been able to sit up and eat anything anyway. Why bother. And as tears slide silently down my face, I wish it was different. I wish I was different. This can't be good for my marriage.

Endometriosis has ruined my life
I know, that is a really negative statement, and it may sound dramatic (I can hear you rolling your eyes) but let me tell you something: there is nothing fun or funny or positive or enlightening about this disease. Endo is a piece of shit.

You don't catch it. You don't cause it. You can't fucking STOP it. And there is not any medication to make it go away. The most horrific part about it (for me, anyway) is that it flares up during times of stress. So in other words, when I am already at the end of a very frayed rope, exhausted and impatient and frustrated and confused, suddenly I find myself bent double with this unspeakable, paralyzing pain. I have similar experiences with migraines and over time I have learned to deal with them - but endo has been a tricky bastard. In the beginning, I was told the pain was all in my head, part of "being a woman". Then one night my husband woke up out of a sound sleep to find me lying on the floor next to the bed screaming. And so they finally operated, and discovered the sticky bits of tissue scattered liberally all over my insides, like sprinkles on a sundae - from my diaphragm to my knee - and wrapped thoroughly around my ovaries forming cysts, one of which had ruptured. A few months later, my marriage followed suit.

When I remarried, Sam was well aware of the issues. Before we even started dating he saw me at my worst - hobbling around bent at the waist waiting for my next surgery - and at my best - dancing on tables with my skirt around my head. He knew the vows "in sickness and in health" were going to be tested. He is clearly a saint. He, too, has been living with chronic pain - but in a different way. He's carried me to the bathroom, been my advocate in the emergency room, gone for weeks without having a date night - or even a conversation that doesn't involve me sobbing into a pillow.

I am terrified that some day - sooner rather than later - he will tire of the cycle of pain and depression. He'll stay out late to avoid listening to me cry myself to sleep, and leave early so he doesn't have to spend an hour shuttling me in and out of the bathroom. Who could blame him, really. Today, when I was in bed sobbing because I had sneezed unexpectedly and the pain had hit me like a truck, he came in to tell me he was going to town with his friend. They were going to Home Depot, and to KMart to get a kiddie pool for me to soak in. And despite the fact that he was going to town TO GET SOMETHING FOR ME I was convinced that he was going to have a few beers and plan his exit strategy while his friend shook his head and said things like "I don't know how you've made it this long, man. She's nuts."

And maybe I am crazy. Living with chronic pain since the age of 15 has shaped me, my relationships, and my lifestyle, (Such as it is. Right now it's hardly an enviable one.) But this week I reached a new low. After trying several times to sit down on the toilet, I actually had to move to plan B - pee standing up. And when my daughter caught a glimpse of what was going on, she clearly thought I was out of my ever-loving mind. I, on the other hand, gave myself a mental fist-bump for ingenuity and perfect aim. Not a drop on the seat or the floor thankyouverymuch. Huzzah! Sure, it was awkward. And yes, it's not a skill I was looking to master. But the truth is, I'll do whatever it takes to keep the pain at bay.

Here are a list of things I have done (with varying success) in the pursuit of pain management:

various birth control pills
surgery (laparoscopy, laparoscopy, laparoscopy, laparoscopy, laparoscopy, laparotomy, laparotomy, laparoscopy, laparoscopy, hysterectomy #1, laparoscopy, hysterectomy #1b, etc.)
And almost every form of pain medication you can possibly imagine, from ibuprofin to morphine.
faith healing.

Yes. I went to a faith healer. I'll just let you sit with that gem for a minute.


May I continue?

I also changed my diet numerous times, variously omitting meat, wheat, dairy, soy, gluten, sugar, processed foods, and coffee. I gave up COFFEE. I am currently sipping on the most disgusting smoothie ever concocted - with almonds, flax, molasses, cocoa, yogurt, peanut butter and god knows what else. It's awful. Really, really bad. But apparently it is also loaded with Potassium and Magnesium, which are supposed to help cramping.

I have tried yoga, pilates, strength training, swimming, and massage.
I took a senior citizen water aerobics class.
I own my very own mineral lamp.

I went through fertility treatments to get pregnant in the hopes that pregnancy would "cure" me of the endo - The pregnancy ended in a c-section that took several hours, because they had so much scar tissue to remove. "This should do it!" the surgeon said cheerfully, up to his elbows in my abdomen doing god knows what to my insides. But just in case, I breastfed Max for 18 months for good measure.

I even breastfed Lucy when we adopted her.

And still, this disease continues to literally eat me up inside.
This week it has taken hold - once again - and I am back in bed almost exactly one year since my last surgery, which is pretty much par for the course. And so, here I am. Curled on my side under the mineral lamp with a pillow between my knees, flinching and grimacing as I move gingerly, staring for hours at the laundry on the floor that needs to be picked up and washed. I have given up on changing the sheets this week. I soak for hours in the tub or let hot water beat down on me for far too long in the shower until the steam starts setting off the smoke detector which I then smack with a broom and break in my efforts to get it to stop.

I just want it to stop.

I know I am not alone. I know lots of women (and coincidentally, many of my friends from childhood) who have endo or some other type of intractable, incurable, unbearable chronic pain. I know my case is not the worst one, but it is really fucking up my life right now and I am angry and frustrated. I am going back to the acupuncture and homeopathy because it worked in the past. I guess I have to stay the course, and stick with it. Maybe forever.

But if you have other ideas I am open to suggestions. Clearly, if I have gone so far as to see a faith healer then I have a very open mind. Well, pretty open.


Elly said...

Woah lady, that sounds all kinds of horrible :( Hope it eases up, or that you find the magic thing that makes it bearable. Happy thoughts, hey

CatherineMarie said...

I too have endo. Its a bitch. I stopped doing the medical treatments after they put my through simulated menopause in college. My SENIOR YEAR.

I was lucky in that going gluten-free seems to have helped somewhat, although it is getting worse, again.

I don't have kids, at this point, I probably will never have kids.

Stupid damn endo. (The other thing that has helped me is limiting plastics, including using washable pads) Tampons seem to aggravate the agony, so no tampons....