Sunday, June 26, 2011

no longer easy

my disease by ceck0face
my disease, a photo by Digital Heather on Flickr.

It's a picture of a picture, but you get it. My endometriosis was growing on the outside of my intestines and caused them to adhere to my abdomen wall and uterus. This pic is pre-cauterization.

When I last updated, I could barely type. My surgery IV line hit a nerve making my right hand and fingers just about useless. I was devastated to have endometriosis but lucky the "cure" was as easy as taking birth control everyday. The day after my previous post I woke up trapped inside my body.

I couldn't move. I could barely breathe small short breaths. I could barely whisper. I laid flat on my back, not moving, for an entire day, waiting for it to go away. I was convinced I had pulled a muscle in my chest because with my tummy incisions getting out of bed was a task and I needed help. I finally agreed to let Jason take me to the ER that night for fear I was going to stop breathing.

It turned out my lungs were full of blood clots (pictured here). I was hospitalized for a week first in ICU then telemetry. It was terrible and I don't remember a lot of it. I'll have the clots for about three months. I have to take blood thinners everyday for the rest of my life. Birth control causes blood clots and may have contributed to mine, so I can never take it again. This means my endometriosis is no longer easy to live with or treatable.

I need to have a hysterectomy. They gauge endometriosis on a scale from 1-4, 4 being the worst. I am a 3. I'll be 28 in a few weeks and everything is about to change. My gynecological surgeon told us we don't have time and need to get pregnant as soon as my hematologist gives the green light. It's now or never. We've wanted children for years-- all the names are picked out-- just thought we had more time.

We were still saving up money for our big wedding. Our wedding will now be smaller and faster. In my last entry I was feeling so cheated by life or cheated out of a life, but I didn't know how good I had it.

My nightstand is an ocean of pill bottles. I'm a journalist who writes about how her body turned against her.
I'd complain now, and I guess I've earned it, but I don't have the time.

Monday, June 13, 2011

on paper

A year ago today, I was traipsing through the redwoods. In was one of the most beautiful places I've ever been, and I'd rather be there now. I had to lay flat on the road with my camera in between passing cars to shoot this and now I can't even get out of bed by myself.

I knew I had endometriosis before I had it. It took over two months and about twelve doctors before it was on paper. I've spent all of my money on this disease.

I have a pill for everything. A pill to poop. A pill to pee. A pill for pain. A pill to stop bleeding. A pill to sleep. A pill to stop throwing up.

I was so healthy and active. I miss living life.

Tuesday, June 7, 2011

a twelve year old boy

biore strips by ceck0face
biore strips, a photo by Digital Heather on Flickr.

Made some late-night strawberry pancakes from scratch for my last meal. Now I'm fasting for surgery in the am.

We biore-ed our noses and caught up on housewives of NJ because Jason and I are cute lesbians or teenage girls or both.

The hospital told me not to wear deodorant tomorrow. Don't they know I'll die? I sweat like a twelve year old boy. Tomorrow will be stinkier than usual.

Andy Milonakis was just in a commercial. I think.

Here goes...

Monday, June 6, 2011

talk to someone about it

having an operation by ceck0face
having an operation, a photo by Digital Heather on Flickr.

I used to have a boring desk job that entailed more internet-browsing and homework than actual work. It was before myspace and facebook (2001) or anything similar or in between. I mostly wrote my papers for college and bought stuff on eBay.

Like my Mr. Rogers posters. I paid almost nothing for them and haven't seen them anywhere else on- or offline. I cheaply framed them and they're hanging next to our bed behind our door. If the bedroom door is open, you don't see them, and usually forget about them.

This pic shows all three posters.

My surgery is less than 30 hours away and I find comfort in his familiar sweaters.

If you can't read the poster, it says:

An Operation
is a way for doctors to fix something inside your body so that you will be healthier.

When you wonder what it's like to have an operation, it's good to talk to someone about it.

-Mister Rogers

And so. Here I am. Talking to someone.

I've been in the hospital, worn a cast, and will undergo a third surgery soon. That should unlock some kind of achievement or trophy.

Saturday, June 4, 2011

almost nothing to it

"There's nothing more pathetic than an aging hipster." Dr. Evil 1997

It's true. It's true 14 years later and let's face it, it's never going to stop being true. It's my background noise because nothing else is on at 6am. Even the TV knows it's summer and there are 100 better things to do. But back to the hipster bit...

An asymmetrical haircut might be too hip for my blood, but it was that or completely shave my head. You never realize how much energy and effort it takes to do daily tasks until you can't. And I can't keep torturing Jason with the "Honey, will you do my hair" guilt trips because he burns his fingers and has no idea what he's doing. He gets points though because how many men (who don't normally use styling tools or products on themselves or for a living or ever in their life) do you know who would at least try? <3

My hairstylist has wanted to cut my hair like this since I met her last year and I could never commit. The thought of only being able to style my hair ONE WAY and having it semi-permanently parted on always the same side wasn't something that appealed to me in the long run. Oh well. I did it. I'm pretty happy with it. It's actually self-styling with my natural curls and I have to do almost nothing to it, which is perfect for my current situation. From the front it looks like it's just half-up or half-falling out which is usually how I style it anyway. It's short in the back and off my neck so my Star Wars tattoo shows.

Contrary to everything in this picture, I am not an aging hipster. I think.

Friday, June 3, 2011

angering the internet gods

Frown is a four letter word? No it's not. Oh maybe they mean... No. It doesn't make sense no matter how you hear it. My Popsicles tell jokes, my milk finds kids, and my cereal used to give me prizes, but I'm not sure what angle/shtick my Jell-o has. My life will change in a few days, and I may have more time to fuel silly efforts like writing Kraft and asking what gives. Or, I may have to return back to my real world with my real job where calendars and clocks are reinstated.

When did conquering the internet and its many social media become so easy? I don't have to sign in for anything anymore. One or two sign-ins and their respective passwords work for everything and get me where I need to go. This internet monopolization makes life easier but probably more forgetful in the end. Like how having a cellphone negates the need to know my own number and I couldn't tell it to you no matter how many guns you held to my head or adjacent Jell-o pudding cups.

BUT THEN I had to rewrite this entire post because my flickr and blogger credentials did not recognize each other in the day time with their clothes on. It's a frustrating irony rather than a funny one and I apologize for angering the internet gods.

I will copy for safety and quit while I'm ahead...