new at site and can I get feedback

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zinnia
Posts: 3
Joined: Wed Feb 15, 2012 2:00 am

new at site and can I get feedback

Post by zinnia »

I'm new to this site. Ive had pne for some time and have been to so many doctors before being diagnosed but I'm scared because I have no training to work from home and live at brothers house and my things get stolen and I cant go to a shelter because they dont understand PNE and they dont accommodate disabilities I was told. I have several other physical disabilities. I'm liveing out of bags and boxes and a couch that worsens my PNE and back pain and I try and be grateful that I'm not on the streets. I'm trying to trust in God my life is going to get better. But I keep thinking there has to be a better way. My mother lives here and has her set of problems and wonders off, rarely, and believe she may have early alzheimers. I try to get her to go to doctor and she has help come in so shes not neglected.Brother wants me to have only my cloths and the rest of my things slowly get stolen and have been stolen. There is so much more thats unreal that no person should have to be treated this way but what is a person to do when I have lost benefits and I'm being told PNE and my back condition is no longer considered a disability in this other city but same state I live in. Be grateful I'm not on the streets. There is a lot more but I will stop as I'm deppresing myself. I have other physical special needs and s.s. didnt report it. I'm tired of it and trying to be grateful and wonder if anyone can relate to what I'm going through. I feel alone in this as others dont understand and dont have to go through it, the people around me and some people i know.They act like its nothing and to get over it and try and make me to do things I cant do. I will stop and again count my blessings and keep praying.
White Falcon
Posts: 51
Joined: Wed May 04, 2011 9:42 pm
Location: Vancouver Canada

Re: new at site and can I get feedback

Post by White Falcon »

Hello Zinnia,

Welcome to the site. Your situation sounds terrible. There is a lot of information and support here. I can certainly understand how others don't "get it." They just can't understand what it's like to have pain in such a private area, and how debilitating it is. I hope things improve for you.
Provoked pain with intercourse 1980-2008
Intermittent flare-up beg. March 2008
Constant pain since Sept. 2009
CT guided nerve block Apr 2010 (made pain much worse)
Hysterectomy July 2010
Other issues: fibromyalgia, migraines, Lyme, gastritis, MCS
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Violet M
Posts: 6714
Joined: Mon Sep 06, 2010 6:04 am
Location: United States
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Re: new at site and can I get feedback

Post by Violet M »

Zinnia, I'm sorry, it sounds like things are really rough for you right now. Maybe a disability attorney could help you get this sorted out. If you would qualify for low income housing, would you be able to take care of yourself if you lived alone?

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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