Uncertain III

It’s not the big picture that frightens me as much as each little daily snapshot. The little uncertainties. Will I have to sleep for 16 hours? Will I be able to get myself to my appointments on time? How will I feel tomorrow? How will I feel later on today?

All these questions weigh on me. They weigh me down.

But I make plans anyway. I *push through*. I say “fuck you” to uncertainty. I try to make my life as certain as I can.

I try not to overcommit myself. It’s hard when there are so many lovely directions to get pulled in.

I suppose I’d rather not live a certain life, predicting every twist and turn. A little uncertainty can be delicious.

Man, I’m hungry.

I’m on clear fluids prepping for a last minute colonoscopy tomorrow.

Talk about uncertainty, I got a phone call and had to start prepping right away.

Surprise!

Cancel a conflicting appointment, start fasting, start this whole ghastly process with the pooping and the crying and the pooping some more.

Twenty-four hours to go.

I want to stuff my face with potato pizza.

I want all the perogies in the world!

I wanna be sedated.

Yeah, time for a nap.

 

Uncertain II

There are things I can change and things I can adapt to.

Sometimes, those adaptations have to happen at lightning speed.

Sometimes, it gets real uncomfortable and painful and I don’t want to fucking do it at all. I’d rather hide in the bathtub forever and ever than have to deal with whatever shit those fucking chimpanzees are flinging at my head today.

Yeah, sometimes I wanna give up. But I don’t. Because I can say there are things I can’t change, but the truth is there are things I can change and things I can adapt to. Just a little shift and I’m back in control.

It’s not easy peasy but nothing worth doing is.

Uncertain

Uncertainty. Not knowing what to expect. This is a running joke written by the writer of my life. They’re on a typewriter in the rain, chuckling quietly to themselves every time they throw in a lupus or a polyp or the death of a friend.

They laugh and I live it.

Uncertainty is inherent in my diseases, including the disease of general life. We all live with it. It hovers above us all. It just feels so ever-present to me. It’s like a cloud above me, ready to rain down at any point. And I ignore it, trying to get on with my day, but it’s there and I’ve forgotten my umbrella yet again.

Ugh, does this even make any sense?

My therapist suggested uncertainty as a blog topic, so I’m trying to write but it’s so hard.

The words are stilted and I’ve been working on this for nearly 45 minutes. I go make coffee, come back. Get breakfast, come back. Write a sentence, feel nauseated, but keep coming back.

Keep coming back, Kaarina.

Keep coming back.

 

Mac & Sleep

I’m out here in the sun, trying to feel better. I had a minor surgery a couple of days ago and I’m still feeling stiff and crampy and my lungs hurt from being intubated. But it’s a gorgeous day and I’m ready to tackle it, even if tackling it just means watching Netflix and eating mac & cheese all day.

I’ve got some comfort food in the oven, that I threw together from stuff left in the fridge and cupboards. Farfalle, yogurt, cheese, nutritional yeast, hemp hearts, and panko. Oh! And of course, some fresh homegrown parsley on top. It can pass for mac & cheese in a pinch.

Other than that, sleep is definitely on the menu today. And I’d like to write out a Friends story that’s kicking around my brain.

My brain is definitely moving faster than my body today.

What are you watching these days? I’m thinking of rewatching Brooklyn 99. I need something simple and hilarious today. The Netflix equivalent of comfort food.

 

World Sjögren’s Day

Four posts in one day?!?! Whoa, slow down.

I just wanted to make a quick note about Sjögren’s syndrome and how it has affected my life.

I was diagnosed in 2007 or 2008. You know it’s funny, I can tell you the exact dates of being diagnosed with scleroderma and PBC, but the only thing I remember about being diagnosed with Sjögren’s is that it was close to a friend’s birthday. I remember that because I had an eye patch and a cane at her birthday party. I had an eye patch because I had torn my cornea due to dryness.

That’s what Sjögren’s does; it makes you dry out. It attacks the moisture and mucous producing glands in the body, most often showing up as dry mouth and eyes, sometimes affecting internal organs, as everything in the body requires a proper fluid balance.

I have my lacrimal ducts cauterized to make the most of the tears I have. I use drops and a mouth spray and sometimes my kidneys go out of whack for awhile. It contributes to my fatigue and constant thirst.

Sjögren’s sucks.

Living with ghosts

I’ve come to both love and loathe the quiet moments. I love the sleep. I loathe the dreams.

Hey now, this post is not all doom and gloom, though there will be a fair bit of that going on. Look beneath, though, and you’ll see the shine. It’s always there under the shit.

I live with ghosts. Not the boo woo kind. Kind of the boo hoo kind. Ghosts of touch. Ghosts of laughter. Ghosts of loss and love. Ghosts of those gone away and those gone forever.

I sit with ghosts. They surround me. Sometimes I feel them drown me. But I sit with them. Stoic. Trying to make peace.

I love the ghosts. I cling to them like they give me life. I cling to them like I cling to my memory boxes, terrified of forgetting, itching to move on.

I never want to forget, so I live with ghosts and they change me. I talk to potatoes and I feel less alone.

I live with ghosts, but they don’t haunt me.

I live with ghosts, so I don’t live alone.

 

Don’t Wanna

Ok, so I’m avoiding cleaning. I know I have to do it. I have a friend staying over this weekend for my birthday. Still, blah, I don’t wanna. For the first time in awhile, my calendar is blissfully blank today. Scrubbing up shower scuzz is much less appealing than going out for a walk or even just watching Netflix all day.

How do you stay motivated when you just don’t wanna?

I tend to do 15 minute spurts. 15 minutes of cleaning, or exercise, or whatever it is I just don’t feel like doing. Fifteen minutes goes by so quick these days, but it can be plenty of time to get something done.

Ugh, time to take my own advice again and scrub up that shower scuzz. Later!