aspified

a blog by an autistic adult

Category: My Life (page 2 of 8)

Learning a thing

I got a digital drawing gizmo for my birthday, which is super amusing since I can’t even draw on paper. But I’ve been playing around with it. Haha.

Digital drawing gizmo

Digital drawing gizmo

It looks exactly nothing like me, but it does have glasses!

my first digital drawing of myself. haha.

my first digital drawing of myself. haha.

January reading

Got books for gifts so I am set for January reading (for the next few weeks anyway). Haha. What are you reading now? Or anything good you’ve read lately?  

A new year

(image text: "Tomorrow is the first blank page of a 365 page book. Write a good one." -Brad Paisley)

(image text: “Tomorrow is the first blank page of a 365 page book. Write a good one.” -Brad Paisley)

If there ever was a year I was ready to be rid of, it would be 2016. I’m so done with it, I can’t even begin to tell you. But I haven’t been optimistic about 2017 either.

2016 will always be the year my mom got diagnosed with acute leukemia. 2017, according to everything her doctors predict, will be the year she dies. Cheery, right?

Before May 2016, when my mom got diagnosed, I thought 2016 would be the year I finally graduated college. (I did graduate. I got my diploma while my mom was in the hospital.) But as soon as I heard the words chemo, cancer, death, etc., suddenly my accomplishment felt very small. By the end of the year I’d almost forgotten that this was the year I graduated college. Seriously. I was cleaning up some things in my desk trying to get my tax stuff together (ugh) and was like “Oh, here’s the envelope my diploma came in.”

I wish I was more unrealistically optimistic. Some people are. I envy them.

I have to work very hard at changing my mindset to one that won’t lead me down the dark road I’ve been down too many times. Granted, right now I have more valid reasons for logically feeling that way. But that doesn’t help.

I don’t want to constantly dwell on dread. I want to get back to feeling halfway alive. After all, I will be forced to go on living even after my mom dies, and she’s not dead yet. I keep telling myself I’ll survive somehow. But it’s a lot of work for me to train my brain to even think it’s possible that I won’t have a completely suicidal breakdown when the time comes. Seriously, a lot of work. Work I haven’t had the energy for in 2016.

I want 2017 to be different. There are things I can’t control, like when someone dies or what happens to that person in the meantime. But there are a lot of things I can control, like what I focus my energy on and how deep into a hole I allow myself to get with the choices I make. I can force myself to shower, for example, or not spend two weeks feeding the imaginary scenarios that play in my head or constantly remind myself how horrible of a daughter I have been.

So in that sense, I am looking forward to the first blank page of 2017. Even though I logically know that we can all start over fresh at any moment of any day, a new year seems like a better inspiration for me to do it.

I want to make each day count. I want to have something from each day I can remember, so that each day can be known for something. Instead of “the year of doom” maybe I could look back and say “but this day here, that was good for ….”. It’s worth a try.

Changes and stress

changes and stress

All of the recent change and stress in my life is really messing up my head. The little bit I sleep, I wake up startled and thinking I hear my mom screaming for me. I wake up not knowing what day it is and thinking we are late for a dr appointment. I wake up not knowing what’s real and what isn’t.

I used to lay in bed for a little while once I woke up to process things. I can’t do that anymore.

There’s no time to process anything because there’s too much to do. Everything is an emergency. Everything is life or death and doing the wrong thing could mean disaster.

People mean well when they say things like take time for yourself and get some rest, but those things are not possible when you are there alone having to deal with it all. There is no time for yourself and no rest.

And then there are the people who want to tell me they know exactly what I’m going through, or they have some bright idea about how to solve the problem. I’m normally pretty tolerant of this type of thing but not anymore. I’m too tired and too stressed and don’t have the energy to be polite to people who have no clue.

I’m tired. I’m crabby. I’m a raw open nerve of don’t you dare try to touch me.

And I know that today is as good as it will get. Tomorrow will be a little bit worse. In the future I will look back on this as one of the better days.

I write here not because I’m looking for advice but because it’s the only place I can express my feelings.

Thanks to my friends for listening xo

Everything changed overnight

good as it gets quote

My mom and I were talking yesterday about how hard all this is for both of us. Aside from the fact she could die at any time, the biggest deal seems to be that everything changed overnight.

The best case scenario now is that she lives with me forever and three times per week we go to get platelet transfusions and once a week go to the oncologist etc.

Once a day I bathe her and help her stand so she doesn’t fall again while she’s trying to put on her underwear because her blood doesn’t clot anymore. We buy a lot of diapers now. We weigh every morning and see she lost a few more pounds and wonder how that is possible. Then laugh because the coffee table looks like a science experiment gone wrong.

It takes her two hours per day to count out her morning and evening meds and it takes me 20 minutes to recount them to make sure she did it right. I have to shoot my mom with two kinds of insulin now because her diabetes pills don’t work with her chemo drugs. We have to make sure everything she eats is bacteria free as well as won’t raise her blood sugar or blood pressure. We have to make sure the PICC line is tucked in and covered properly so she doesn’t accidentally pull it out at night and die. I have nightmares about that.

At night we say “Goodnight I hope you get some sleep and don’t have to get up later to call an ambulance.”

This is the new routine.

This is the best case scenario routine.

Once she can no longer tolerate this chemo pill, she will die without a stem cell donor. This is our reality now. Hospital socks so she doesn’t slip on the floor. Trying to find the least bruised place to inject insulin. Listening to her cough and gasp for air because that’s one of the better side effects.

Having well meaning family members and her friends say she should just go ahead and die. Explaining to them for the fifth time that no she really can’t have flowers, because the dr said mold could kill her, and trying to care about their hurt feelings. Because it’s a struggle to fit caring about anything else into the new routine.

Before May 4, everything was fine. Now I just try not to cry because she’s home and if I cry she cries, and when she cries she can’t breathe. Now I stay awake at night wondering how long we will be able to afford this best case scenario and wishing my mom had gotten a better daughter. So for the people who asked, this is how we are doing.

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