Is it a Livejournal entry without excessive italics? Stream of conscience

Oct 03, 2023 20:20

How do I write something that I've said before, but this time without sounding self-indulgent? Can one ever sound TOO self-indulgent when writing about the loss of your internal organs? How much time do I want to waste feeling angry, confused, bitter, or resentful - and can I stop myself from feeling those things regardless of how much precious ( Read more... )

lupus -omg i don't have a nipple

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matrixmann October 4 2023, 02:17:26 UTC
Even if not the best news, still it's good to hear you're out there.

And yeah... Letting someone or people in about one's personal state, after closing in for a while and swallowing everything down - it becomes not uncomplicated to reverse that process again. Might take a while.
It's almost like... not looking at dirty corners inside of one's living space.

...Can't say if it's a correct way to think so about it, but - I guess, one factor to get started with it again that one should cling to is: "Does anyone bother hearing that shit? - They should.". Regardless if anyone truly does, one should act like anyone does. Even if no-one doesn't.
- Sometimes there are things that don't really matter, but still they should to anyone - because it's like an inner forest fire.

(I'll hope this is is linguistically understandable...)

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quirkytizzy October 4 2023, 02:19:51 UTC
That makes INCREDIBLE sense, actually - and thank you! I like that way of looking at it.

And yeah - I used to be so much more open and over the years of being sick, I've........drawn in. I miss being able to just be open, but at the same time - like you said - it's hard to unreverse that.

": "Does anyone bother hearing that shit? - They should.". Regardless if anyone truly does, one should act like anyone does. Even if no-one doesn't."

THAT. YES. I staked over half my life on that. Maybe it's time to revisit that.

Also it is good to see you!!!!

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matrixmann October 4 2023, 12:59:44 UTC
"Drawn in".... This reminds my brain of something...
(Attention, blast from the past plus trigger incoming!)

It will take time to get out of this dead end.
The most important thing is that you try and follow your instinct to talk if you feel like it and don't think like "ugh, does it really matter to anyone? fuck it!".

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soon_lee October 4 2023, 19:07:06 UTC
Stay quit is a good strategy. IMO anything that gives you more options is the better approach. My father who was diabetic was on dialysis for a while (about a year?) before getting a kidney transplant. And he got an extra three decades out of the new kidney. What eventually killed him was not kidney failure but heart disease.

I am glad that life has been good for you the last few years. May it continue to be so.

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cemeteryconsort October 4 2023, 03:09:09 UTC
Stay quit. My step uncle was on the list for a liver, he drank through his first one. He quit, started to feel much better (because said liver was not drowning in alcohol) and so he eventually decided he could drink again. His liver said 'fuck you' and so did the transplant list. He died about a year later.
I'm glad you quit, for many reasons. Stay quit. Please.

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quirkytizzy October 4 2023, 03:15:41 UTC
Ironically I quit 2 months before we realized my kidneys had dived off the cliff so badly, so I had no idea it would soon be so relevant to the transplant list. But yeah..........that is one of the biggest reasons I will (probably) stay quit. Would just be my luck to ruin something really good right in the nick of time lol

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andrewducker October 4 2023, 09:50:55 UTC
You need to talk to someone who actually understands. Which means a support group for people with the same issue as you, so that you can all go "Finally, someone who gets it!"

Also: *Hug* This sounds incredibly hard!

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gonzo21 October 4 2023, 09:58:04 UTC
Yeah, stay quit.Quitting is the one thing you can do in your power to buy yourself more life. And when faced with kidney failure, over which you have little control, having control of the smoking is a big thing.

(I rather suspect Bart would still be alive if he'd quit smoking and drinking. And, I've found, our 40s is when we start to lose our friends who smoke and drink and do drugs.)

Plus, you know, it counts for the transplant list doesn't it.

It's funny how when you get out of the habit of letting people in, you kinda forget how to do it.

And hey the good news is you live in a country with extremely high rates of young people killing themselves in road accidents, there's a cadaver out there with your name on a bit of it.

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blozor October 5 2023, 00:51:13 UTC
Which form of dialysis did you choose? Peritoneal takes a good amount of space for the dialysate and you need a sterile environment to hook up to the equipment each night. It also makes you more susceptible to peritonitis, which is not fun, and you'd have to keep the cats away from the tubes because they will want to attack them. The plus side is you can do it while you sleep.

On the other hand hemo requires long periods of sitting, but on the plus side, you get needles several times a week!

Also don't despair because artificial kidneys should be starting clinical trials within the decade: https://pharm.ucsf.edu/kidney/device/faq. (Let's see if I still remember how to HTML.)

I feel like at your ages you and Amanda might be shoe-ins for trials because they'd potentially be able to track it for decades. If you scroll down to item 24 on the link there's a form to sign up for updates so you can be notified when trials begin.

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