chronic-ow

[chronic-ow]

Things People Don’t Mention About Top Surgery or Mastectomies

There is reluctance to do the surgery if you live alone, even if you have a good support system. One of the most stressful things was the hospital constantly asking about who would be looking after me, picking me up, etc. I really felt the bias towards people who are married and against people who are single. I don’t think it was intentional but it was definitely there. That being said you will definitely need a robust support system of some kind to get through everything in the first 4 -8 weeks or more after surgery. 

All your pill bottles will have safety caps and you won’t have the strength to open them on your own without a lot of struggling.

There are soooo many medications. Take them as prescribed and when they say take the level of pain meds you need to manage your pain, do it. I got opiods and ibuprofen. If the pain is bad 5-7+ on the 1-10 scale take the stronger meds. Pain can slow healing by causing stress on the body.

Drains are a pain in the ass. Every hour pushing the hoses so they don’t clog. Major drag but they are very important and if they get clogged it can cause issues

Sleeping sitting up, prepare for this. Lots of pillows or recliner or something. Practice for a week or more before surgery to get used to it. 

Sleep as much as you need. Don’t feel like you should stay awake or whatever because you are supposed to or it is day time or whatever. Listen to your body.

Drink lots and lots of fluids. You may think you are drinking enough but you probably aren’t. The fluid in the drains and the medicines and peeing all the time and sweating from the tight wrap. You need to replace all of this fluid. I think I have been up around 80+ oz the past few days.

The month before and a month after surgery eat a high protein and higher calorie diet. It will help with surgery and recovery. You need the energy and the protein to recover. 

Cut out added salt, caffiene, alcohol, and nicotine before surgery and during recovery. All of these can increase fluid retention, slow healing, or be dangerous with the meds.

Your chest will feel very strange. At first you can’t feel anything and then the skin feels tight everywhere and still strange. The recovery process feels real weird. Your whole torso feels kind of bizarre and new.

Ask all the questions. No question is stupid. It’s trauma to your body ask all the questions. YES all of them.

The tube (intubation) from surgery irritates the throat. Coughing from this sucks so damned much because of the binder and the chest tightness and what not. Find lozenges (Both cough drops and just candy) that you like. I say candy because too many cough drops can upset the stomach and you don’t need that after anesthesia and with all the meds. Also get popsicles.

Take everything out of packages you can before surgery. They are damned hard to open. Those paper cartons holding the apple sauce and snapping apart pudding cups and pulling apart pill blister packs.. ugh I should have taken them apart before the surgery.

Scissors are your friend and every package is an enemy. Seriously, get a good pair of scissors for packaging.

Also, skip 2 liters of pop, gallon of milk, etc. They will be too heavy to pick up after surgery. You can be more independent if  you get smaller size things.

Timers are your friend. All the phone timers forever. Also, handwritten or some other chart type to keep track of drain cleaning and taking meds. You will be sleepy and forgetful the first few days. Use other things to help you keep track.

Take stock of how your lights go on and off. Can you reach them while pretending you are a T-Rex. If not, especially ceiling fans and that, put long strings on the pulls so that you can operate them while you can’t raise your arms.

Also check your doors to make sure they don’t stick. You won’t be able to tug hard on doors or drawers or whatever.

Get yourself some treats. Food related or clothing or whatever. Treats will help.

Before surgery plan out and prepare at least a week of meals. Be sure to include some that are easy on the stomach like crackers, rice and chicken, etc. Just in case you have stomach upset from the anesthesia or meds. Gentle foods include starches and chicken/tofu that is low fat and low spice so that it is gentle.

Soft fuzz free and easy to get on clothing is essential. I went out and got a couple of those shorts and button down shirt pajama sets. Life savers. Also, get a size or two bigger than usual to accommodate drains and padded bandages and things. 

Strange pains, you will probably have them. 

Be sure to do the arm exercises as directed by your surgeon and watch your shoulders hunching. The shoulder hunching is from the chest tightness but you don’t want your back to start hurting. Try to sit up as straight as you can.

Pump action soap dispensers will be too hard to use the first few days.

Weeks before surgery, start teaching yourself how to do things without your arms; like standing up, getting into and out of bed, squatting, getting up from chairs, etc. Practice doing things with your elbows next to your chest like a t-rex; getting food and drinking, brushing teeth, taking meds, etc This will be very important

I am sure there are more but I thought some of you might benefit from the things I have learned so far from going through surgery.

[chronic-ow]

When I realized pre-packaged food was for me, my entire outlook on life changed.

Let me explain.

I remember walking through the grocery store with my mother as a teen and her making a bitter comment about how everything had more packaging now. De-shelled hard boiled eggs in plastic, cut fruit, pre-portioned salads, all of it was "laziness" to her. She insisted people were getting lazier to the point where if my brother ate pizza from the fridge, she would chastise him for not heating it. She would say "you deserve warm pizza" as a way of saying you should do something the "right way" because it's worth doing.

This isn't because my mother had no concept of people with disabilities, she is disabled herself. However, in raising me, she taught me to hide that disability, to try to be on everyone else's level so we aren't seen as weaker. That laziness is worse than being disabled and there's simply no excuse for taking shortcuts. I don't think she intended to teach me this, but her own internalized ableism was so loud.

When I became an adult, I realized I hated cooking. The prep was tedious, I almost always have dishes in the sink, there's cleanup after, my back hurts, my eyes burn, it's too hot and in the beginning, I got overwhelmed to the point of crying. Leftovers were almost never eaten becuase heating them up (the "correct" way to eat them) was an extra step that made me not want to put the effort in. I thought I was lazy and felt ashamed when I wanted something to eat but couldn't bring myself to make it.

At some point, I finally said "I'm tired. I don't care how much packaging it is, I don't care how lazy it is, I'm going to get meal kits."

It was life-changing. Dinner takes 30 minutes to make. Everything is portioned. The directions are clear. I don't hate it anymore. I want salads in bags. I want eggs that don't take three steps to eat. It's not laziness, it's accessible! I don't have to make a meal, I can eat the raw vegetables, have pasta with butter, eat a granola bar! There's no right way to feed myself!

I made things SO HARD on myself because I wasn't acknowledging my disability or my depression and they didn't need to be hard! I didn't need to go around the store saying "is that really necessary?" Because it IS necessary for me! It's brilliant! It's so helpful!

Accessibility takes so many forms and overcoming internalized guilt for not being able-bodied or mentally well enough to handle tasks other handle easily is incredibly freeing. Obviously I'm lucky to be in the position to have this option avaliable to me, but I kept myself from it for far too long.

I do deserve warm pizza. I can have it delivered.

[chronic-ow]

planning my thesis film and writing in a disabled cane using character only to have someone say that we’ll just use my cane so we dont have to buy one is infURIATING

[chronic-ow]

Being transgender is fragile.

.

Being transgender

Is seeing another news story of ones of your sisters killed.

It is the comments on news articles and memorials filled with jokes and vitriol.

It is the news station itself choosing to disrespect and disregard the names and identity of those who were murdered.

Being transgender

Is the aching, empty feeling

That there will be no justice.

.

Being transgender is

Kissing your wife gently before work,

Holding her hand in your own

And telling her to be please be careful running errands today.

It is when the phones malfunction

And she doesn't answer her phone for an hour

So you break down in the bathroom,

Because she might be dead

And there's nothing you can do.

Being transgender

Id the feeling of helplessness

Before the tsunami that comes to consume you.

.

Being transgender

Is sitting in the back of an uber

With a woman you don't know preaching God to you.

She thinks you are a cis man and tells you about how God demands obedience,

And how the gays and transgenders are wicked

For turning away from the friends and families that abuse them.

And that love, but not faggot love, is the most important.

Being transgender

Is staring down at your hands in that moment

And remembering all you have lost.

.

Being transgender is fragile.

It is a shaky, terrifying, cracked sort of thing.

But it is also strength, a struggle, gold lining all the cracks and making it shine.

Because it is also mourning gracefully,

And kissing your wife before work,

And standing up for yourself in the back of the car.

.

Fragile.

Fragile, great thing.

[chronic-ow]

Honestly, how you treat symptoms of my disability before it's spelled out I have one is just as important as how accommodating you are after.

If you mock me or accuse me of not paying attention when we are in a loud place, it doesnt stop hurting when you decide to treat me better later. It also upsets me when you insult other, presumably able bodied people for doing the same thing.

[chronic-ow]

serious post. start combating any misinformation you find. monkeypox is not an sti. monkeypox spreads through *any form of contact*. it is not exclusive to gay people, and it is *not* gay people's fault. we can not let history repeat itself. don't let flashy headlines take the place of medical facts and information.

conservatives are already itching to start a witchhunt against LGBT people and monkeypox is something they are going to latch onto.

don't let them. don't let this turn into a repeat of the AIDS crisis.

[chronic-ow]

“sex is the greatest act of human intimacy”

but have you ever

• saw your loved one’s eyes in the sunlight and wanted to tell them that they look like they’re glowing

• cuddled together on a soft bed playing with your loved ones hair

• sat and listened willingly to someone ranting about trauma and personal issues

• sent a letter to a long distance friend to tell them that you’re thinking about them

• stargazing together

• feel a sweep of ecstasy when you see them smile?

• had a deep and full hug that lasted longer than a minute

• laid on someone’s chest and listened to their heart beat

• had someone sit and comfort you while you cry, because at least you don’t have to be alone

[chronic-ow]

Sexual feelings are neutral feelings. There's no morality attached to them.

Romantic feelings are neutral feelings. There's no morality attached to them.

Feeling or not feeling these feelings, or feeling/not feeling them in any combination, says absolutely nothing about what kind of person you are.

[chronic-ow]

if i could have abled people know and really internalize one thing it’s this: when it comes to mobility aids mind your own business.

if you see someone you know who previously “walked fine” with a new mobility aid, mind your own business.

if you see someone in a wheelchair stand up or walk, mind your own business.

there are so many reasons someone may need to use a mobility aid, and there are plenty who use them inconsistently; that doesn’t mean they don’t need it.

[chronic-ow]

i love you closeted queer people, i love you queer people who are afraid to "look queer", i love you queer people who hate getting told things like "you ping my gaydar" because that's scary, i love you queer people who are terrified of being outed, i love you queer people who don't fit the narrow tiktok/tumblr idea of what queer looks like (ESPECIALLY if you're disabled and/or a poc and that's part of why you don't), i love you queer people who rely on queerphobic family to survive, i love you queer people who find it hard to joke about their sexuality/gender, i love you queer people with a complicated relationship to being queer

[chronic-ow]

"I'd rather die than live like you."

Damn bitch, I thought that I was pathetically weak, but you win. You're officially weaker than a guy who walks a block and needs to sit for ten minutes.

[chronic-ow]

Saw this on r/LGBT and figured my aspec followers would enjoy.

[chronic-ow]

never have i ever loved something more then this

reworked these guys a little bit, planning to add a few prints to the shop later this week ✨

[ID: first image hand holding a print the size of a piece of printer paper cut in half hot dog styles. the print is of five keith haring style figures dancing, each of which are disabled, farthest to the left is a pink figure with a blue service dog (stylized like keith harings dogs) in a harness, next is an orange figure in an orange wheelchair, then a green figure with a green rollator walker, next a purple figure with two purple forearm crutches and last a red guy with a small red cane. second image is the digital version of the print /id]

[chronic-ow]

people need to understand that it's literally none of their business why someone has a cane. even if they didn't have one last time u saw them

[chronic-ow]

why are so many people more horrified by the fact that I have to take multiple medications daily than by the fact that I am in severe chronic pain every day? 

[chronic-ow]

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[chronic-ow]

When you start out a day and you think "I might not get much done today" please know that this is ok. Just surviving the day is a tremendous accomplishment and is always good enough.