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PBC Foundation

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Alley27 profile image
17 Replies

Hello everyone I hope you are all doing welll.....It seems that I have not been on here for some time but, I actually had to make a new account because I could not for the life of me remember my log in details for this one. My other account name is Vespa 27 lol....how did I get into this old account you may ask....well, I tried to log in to my new account, but instead, I put the log in details for this one lol...it's amazing what brain fog can do. So plase if you recieve any messages or responses from conniefused or vespa, it's me..my real name is Alley......thanks guys.

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Alley27 profile image
Alley27
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17 Replies
sophie666 profile image
sophie666

Hi alley I'm same brain fog is so annoying xx

Alley27 profile image
Alley27

Hi Just been checking this account and it appears m name is alley 27 lol....how i forgot this I have no idea...lol but I think I will be using this account rather than Vespa, which I will delete if i can remember how to log in to it...arrrrggghhh brain fog

Yankeerose3 profile image
Yankeerose3 in reply toAlley27

I am having a horrible time dealing with brain fog.... memory and fatigue gets so bad it slows me down and after 24 years at my job I'm not meeting my calls per hour so will be "letting me go."

Arlie profile image
Arlie in reply toYankeerose3

Hi Yankee , check into SSI, pbc is a disease to be considered, right now my ammonia level is elevated so i’m Having some brain fog, I’ve been taking lactulose and it’s helping , I have PBC over 30 yrs

Yankeerose3 profile image
Yankeerose3 in reply toArlie

Dr's office took lots of blood and ammonia being one of them so waiting for results. I am going to look into SSI. Any pointers?

Arlie profile image
Arlie in reply toYankeerose3

Many years ago I went on SSI disability now I’m 71 , if they refuse you fight it , don’t give up, its hard to work with pbc, I use to fall asleep, how long do you have pbc

Yankeerose3 profile image
Yankeerose3 in reply toArlie

I don't know how long I had PBC but biopsy was in 2013 which is when I started taking URSO. My daughter is 30 and she said all her life I complained my back itched

Yankeerose3 profile image
Yankeerose3 in reply toArlie

Arlie, what did you say to get approved for SSI?

Arlie profile image
Arlie in reply toYankeerose3

You just tell them you fall asleep and itch badly , the liver is a main organ

Yankeerose3 profile image
Yankeerose3 in reply toArlie

I have been so tired 😴 sometimes I fight to stay awake driving to work and push myself to stay awake while trying to talk on the phone (customer service representative)

Arlie profile image
Arlie in reply toYankeerose3

Do you live in NJ , I do

Yankeerose3 profile image
Yankeerose3 in reply toArlie

No, I live in Chesapeake, Virginia

Arlie profile image
Arlie in reply toYankeerose3

One time I got so tired and I was driving and almost fell asleep , God woke me up , I was going off the road on the Turnpike

Yankeerose3 profile image
Yankeerose3 in reply toArlie

That has happened to me too. Scarry

Vespa27 profile image
Vespa27 in reply toYankeerose3

I understand hun..my body is telling me I should retire but I need to pay my rent, so I keep on. I have just worked a couple of shifts, I am triple exhausted, and I hurt from head to toe. I also have been told that I have osteoarthritis in my ankles feet, toes and in many other of my joints. So standing long periods is not helping...I need to get another job but, don't want to retire just yet. X

Yankeerose3 profile image
Yankeerose3 in reply toVespa27

I feel your pain. Getting old isn't for sissies

Arlie profile image
Arlie in reply toVespa27

On SSI you usually have to wait but it’s all back pay from when you applied than you get a monthly check

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