#ileostomy

[i-wheely-love-poodles]

Privileges of being visibly disabled (sarcastic) edition:

People ask you about your medical history at random and sometimes without even a cursory greeting

People target you because they know you (presumably) can’t fight back

People treat you as both more or less capable than you actually are (whichever is more ableist)

Infrastructure is not accessible in many ways and even hostile at times (impacting those with blindness, deafness, mobility aid users, and more)

Your rides from apps get canceled due to your disability equipment

People get grossed out by what keeps you alive (ostomies, tubes, ports, etc)

People grabbing and moving you without consent

Being treated like furniture the more you are perceived to be disabled

Feel free to add your thoughts or other brilliant suggestions for this list.

[this-smile-is-real]

Update: Would appreciate your prayers

Last night I saw a surgical registrar for the second time yesterday and I’ve been told there’s nothing they’re going to do for the prolapses, I just need to keep presenting to ED whenever they happen. My ileostomy keeps prolapsing and has been since January this year.

I am in so much physical pain. It has been prolapsing daily lately and it is so incredibly painful.

It comes out by 10cm and it’s absolute agony getting it pushed back in.

I’m not sure what to do. The public hospital isn’t giving me any options and I don’t have the money to go private (I’m on the disability support pension and have been unable to work for 4 years due to my health). My initial surgery last year drained my parents savings and they’re both retired, I can’t afford private healthcare.

I am feeling desperate, let down and in so much physical pain.

[stellaltumi]

shoutout to all the fellow disabled people who spread awareness and advocacy even when they have no energy to do so, I see you, I love you, and you are so deeply appreciated. your story has the potential to be someone else's survival guide.

[chronic-jessii]

Traveling via train to Austria with some friends and so far it's been pleasant. Crew was very helpful and careful with my wheelchair. So far the only awkward thing was finding something to hang my feed pump on, it's usually in a backpack attached to my wheelchair. Biggest drawback to traveling when you're disabled is the extra bag for supplies.

[thatmissquin]

He's been such a brave boy and man of the house while his Dad has been in hospital.

My husband is improving and hoping to have him strong enough to return home sometime this week.

Thank you all for your continued love and support and those who have generously given their time to talk with me on the phone, donate to the gofundme and sit with me long hours.

I feel so cherished.

[skyonwheels]

Please share or donate if you can!

Donate to Skylar Needs Your Help: Facing Disability, organized by Skylar Rungren

My name is Skylar, and in 2021 I fainted in the shower and developed cauda eq… Skylar Rungren needs your support for Skylar Needs Your Help:

[b-j-d]

A throwback to 2018, when Stan Lee was only 5. Today marks 13 years. Bit crazy to think about really.

Also, why did 2018 Stan Lee Stoma look like Sam Claflin in Enola Holmes? Did Netflix steal my idea 🤣🤣🤣🤣

[disabled-witch]

Mending as a Natural State

Initially, I was deeply afraid that my ileostomy procedure would diminish my connection to the natural world, make me unnatural in some way. How could it not? I would have a plastic bag attached to me for the rest of my life, I would have my intestines sewn into my skin. In my mind, these adaptations were going to irreparably separate me from the natural order.

I have come to realize that this is simply untrue. What could be more natural than survival? What could be more natural than adapting to the environment that you are born into? Disability is part of nature's diversity, a part of the chaos that makes up the universe. The strive to live, the strive to build a better life, the strive to protect you and yours, that is of nature. I did not become less because of this, I am simply adapting. And that adaptation is precious.

So if anyone else needs to hear this: No matter what piece of nature's chaos you have been given, no matter what steps you need to take to adapt to this world, the drive to thrive is beautiful. Your life, in whatever form it takes, is beautiful.