I'm back, for a while :p

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miapeters

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  1. Incontinent
Hi everyone. After a long time I'm able to post here. I'm still figuring out how to do a lot of things but I finally have managed to find the time to post here.
For the people who know me it's coming up on an year since my last surgery and with regards to prosthesis I've improved a lot, also come to terms with the fact that most things I would be needing help with.
Sorry to anyone new my story is kind of long to type.
Unfortunately the incontinence is still kind of obstacle. The whole ordeal of getting changed is still very much unpleasant to say the very least. But I'm a little less stressed over that these days.
It's been an okay summer, kind of boring too. It's very possible that by the time the fall semester is here I would be having so much stuff to be doing I might be radio silent for a while. But hey we have time to discuss plenty of things.
 
Hey Mia! Glad to see you back :D
 
hope you're doing ok, been worried about you,
 
Hi and glad to see you back. I'm sure it's challenging to adjust to your new life. Yeah, studying takes up a lot of time and that needs to come first.
 
Welcome home Mia!

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Welcome back, I’ve wondered how you are doing since your last posts. Glad to hear you’re still with us, and navigating the ups and downs. Best!


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I will echo what others have said and say 'Welcome back.'
 
miapeters said:
Hi everyone. After a long time I'm able to post here.

Miaaaaaa! :hug:

It's great to see you back!
 
miapeters said:
Hi everyone. After a long time I'm able to post here. I'm still figuring out how to do a lot of things but I finally have managed to find the time to post here.
For the people who know me it's coming up on an year since my last surgery and with regards to prosthesis I've improved a lot, also come to terms with the fact that most things I would be needing help with.
Sorry to anyone new my story is kind of long to type.
Unfortunately the incontinence is still kind of obstacle. The whole ordeal of getting changed is still very much unpleasant to say the very least. But I'm a little less stressed over that these days.
It's been an okay summer, kind of boring too. It's very possible that by the time the fall semester is here I would be having so much stuff to be doing I might be radio silent for a while. But hey we have time to discuss plenty of things.

Welcome back and it’s good to see you’re doing better!
 
Great to have you back. I'd be interested in a more in-depth update on your current condition.
 
Welcome back Mia! Glad to hear you're doing well and still in school.
 
Thanks guys, I'm doing pretty well. I've bean navigating on how to deal with certain things since my last post and it hasn't been fun, but I've found time to be content I guess?

INTrePid said:
Great to have you back. I'd be interested in a more in-depth update on your current condition.
A lot has happened since my last post but in general I'm doing a lot better.
If you guys have any questions feel free to ask, i honestly wouldn't know where to begin if I were to explain the last year :p
 
miapeters said:
Thanks guys, I'm doing pretty well. I've bean navigating on how to deal with certain things since my last post and it hasn't been fun, but I've found time to be content I guess?


A lot has happened since my last post but in general I'm doing a lot better.
If you guys have any questions feel free to ask, i honestly wouldn't know where to begin if I were to explain the last year :p
Is it still your caregiver who does all your changes, or have you taken over some of that again?

Have you gained any feeling back since losing it just before the last sepsis incident?

What protection are you using now?

And what prostheses are you using? Are they allowing you to become more independent?

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HumanFly said:
Is it still your caregiver who does all your changes, or have you taken over some of that again?

Have you gained any feeling back since losing it just before the last sepsis incident?

What protection are you using now?

And what prostheses are you using? Are they allowing you to become more independent?

Sent from my LG-H870 using Tapatalk

Yes, changing isn't something I can do at all. Unfortunately for above elbow prosthesis there's not much I can do. I can write a little and hold things and stuff but nothing complicated. Things like doing my hair and getting changed, can't really do. There are computerized ones but they are slow and a lot less practical for me. I use the body powered prosthesis which are a lot more versatile, and may not look the best but they are functional. I can also walk on the prosthesis I have but at home the chair is easiest.

I have actually got a little feeling back so it has made things a little easier in terms of knowing that I need to change. I am still using cloth at home since it is more economical but if I'm out of the house for the whole day or more then I use disposables.
 
I can't imagine living without one of my limbs, let alone all four. Must be difficult.

Have you ever had a case of phantom limb?
 
Themanswifesman said:
I can't imagine living without one of my limbs, let alone all four. Must be difficult.

Have you ever had a case of phantom limb?
Yes, getting used to someone having to be there all the time is really frustrating sometimes and emotionally it has been really damn difficult. It takes time I guess. But being with people helps a lot.
The phantom pain is a problem sometimes. I get it randomly and it's pretty bad sometimes but it was a lot worse before so it is improving.
 
At some of my worst pain,when doctors stare at you blankly ,i was ready to have a little accident and cut the damn thing off ,i reached out to somebody ,we went and got coffee,he said they don't understand your pain now just wait, until the limb isn't there and your still in agony .

It's has gotten better there have been some great leaps in understanding pain,there are also "optional" not optional guidelines and supply of legitamate pain medications being heavily controlled which is once again driving patients to more affordable and plentiful street drugs ,which is stacking bodies like firewood from accidental Od's, it the goverment making the crisis worse instead of helping ,i am very fortunatevthe very last door i knocked on before giving up has been my strongest advocate ,she promised me she would not let me suffer my pain ends in death she new that when I explained what I had ,and can not understand why I had some dumb ass doctors actively trying to smear my name ,and deny me palliative care ,any way phantom pain can be an incredible burden on the patient, and it doesnt have to be. Every body has to take a step back breathe and practice evidence based medicine the "gold standard" of care , not knee jerk reactive medicine that cost people's lives ,Un treated and under treated pain is one of the leading causes of death, currently suicide is the tenth most common manner of death in the United States it is up 30% from a devade ago.

"Deaths of despair" are up also people who feel like life passed them by there is no American dream for them,and the final act of indignation at the powers that be who should have done something has blood on there hands , unfortunately that message is never converted because politicians are so desperately out of touch with constituents never leaves them moved , or propels them to vote for some bill that prevents tommorow traejedy buy bracing that dominoes from falling.
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I manage the pain pretty well these days but there are times when things are not going well for me and you get to not such a nice place. But I try to deal with it best I can.
 
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