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I Need to MOVE from my Mom and Step-dad's Home (But I Need to get my Benefits) [Jul. 9th, 2013|11:26 am]
[Current Mood |worriedworried]

My family has been ordered to move by apparentlly the homeowners association and my mom and step-dad accuse me of "destroying the house with water!" I wash off my stuff when I get home because they smell and last night the sink upstairs wsa stopped up--my mom who told me to wash my shoes outside now told me when we move I can no longer do even that! In previous posts I mentioned my mom compares me to Howard Hughs for that, and I feel can't live with my mom and step-dad any longer!

I've been talking to my counselor at the LGBT center to help me move but I'm worried I won't be able to get my disablity benefits so I can move (my step-dad is the payee, I was declared by my mom as incompetent, but he's old and ill). I don't know if we're being told to move out of our townhouse because of my alleged destructive activities with water. What can I do?
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Catheter -- experiences?? [Jun. 21st, 2013|07:02 pm]


I’ve always had the odd slip-up with my bladder, but usually my control is very good, although I have good & bad days with it. When I’m stressed or upset it's not, (“stress-wee” if you will), I'm on tablets for it & for anxiety. I had a cat & dachshund who had the same problems; the dachshund even peed while he walked.

I've been in situations where I’ve been unable to move, speak (apart from foldmaking a noise like “AUUUGH”), or think cos the pain's so bad, & any accidents are like a cloud burst. I never feel totally empty. I could be on the loo for ages but not be “done”. Where I live, they all try their best for me but they can't do my things every 5 secs; (they can't do anyone's things every 5 secs)

I'm sick to death of all this & want a cath – an inside one – now -- but apparently there's no medical need for me to have one & it'll make me more disabled(!)

Every time I voice my concerns it's just chalked up to anxiety, & if I went out more I’d be fine
[sarcasm](course I will, I’ll just hold it in all day, shall I?? [/sarcasm]
I've always just managed with adult nappies (diapers) but I hate them cos it's embarrassing, & when I’ve been out they've always been drenched.

I want to go to various things I’ve always had a yen for – Renfaires, folk festivals etc. I’m a CPAP patient so I wouldn't manage all day cos of being unable to stand, no hoist (something about insurance) I also want to do supported living in the future, & there'd be more chance of this working was I cathed.

What should I say to the dr. when I see them ??
Is it worth getting a carer on-side ?

If you've got one

1 – how do you manage??
2-- What does it feel like ??
3 – How long did it take to get it ??
4 – Do you ever regret your decision ?? Why/why not ??
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(no subject) [Mar. 26th, 2013|08:37 pm]


I'm nearly 30 & I've recently moved out. It's a small care home which is very good – yes I know I said this would never happen but, well, things do)

As someone said, I’m now finding out who * I* am; i'm not just my parents' daughter anymore.

I believe I may like a little from column A & a little from column B. <= =>

I've never had *actual* sex, because stiffness means I can hardly move & it would more than likely be painful. I doubt I will both because of this & because no-one has shown any interest. My interests are very odd for a woman & aren't conducive to getting much, if any, sex anyway. I've done the girly version, & would have had a repeat performance had she not been such a nasty piece of work that I had to cut contact.

I had, & still have, a gargantuan crush on a certain older singer – not in a creepy way --, & wish to find someone who is similar in looks, if at all possible.

1 – When I say older, I mean older; I’m talking white-haired folky hippie witchy (wo)man with voice of a Siren. I am dreading the questions – “is that one of your relatives??”

2-- The carers I’m closest to know of my supposed leanings, (as does my mum, who never ceases teasing me – good-naturedly, though) & one carer I am close with is going to help me sign up to a dating site & plans to chaperone if she's allowed.

3-- I’m worried I will be asked to leave the home if/when I bring someone of the same gender back. I know this home wasn't where I planned to live but my needs are catered for surprisingly well & I see staff & residents as “adoptive family”. The other place I was offered was crapuscular, & didn't even do the basics.

Had I not been disabled, I could've either come to terms with what I may be or boxed it up & forgot all about it. This is eating me up inside.
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Groceries [Dec. 9th, 2012|10:31 pm]

I am trying to figure out groceries shopping and figured I would ask for advice.

I currently have a great deal of difficulty navigating through the entire grocery store to get my weekly food needs met. No store near me has electric carts (and besides, I would need to carry them many blocks home). No store delivers to my zipcode.

I have, quite literally, no idea of how to deal with this and have been reduced to tears many times in recent weeks. Anny advice?
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Blackberry suggestions? [Sep. 26th, 2012|09:19 pm]

[Current Location |Canada, Ottawa]
[Current Mood |sleepysleepy]
[Current Music |Faunts -- M4 Part II]

Hi all,

My employer is about to issue me a Blackberry (yes, it has to be a Blackberry). I have very little useful eyesight, and generally avoid smartphones, because I can’t see enough of the screen to read anything. I’ve been told that magnification apps exist, but I think that using 6x magnification on a four-inch screen is absurd. That said, I’m open to a screen-reader or other voice navigation option. Does anyone have any experience with, or suggestions for, Blackberry options?

Help would be greatly appreciated. Thanks,


(Cross-posted like whoa...)
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Commercializing Diseases [Aug. 27th, 2012|12:53 pm]

[Current Mood |curiouscurious]

This might be a strange question, but I'll give it a try. Does your disease/health problem/disability have a logo or a slogan? If so, do you like it or dislike it? Do you even care?

Alternately, do you have any strong (or note-worthy) feelings about diseases having logos to begin with?

I haven't really ever heard this discussed, but have really disliked the logo for my (still officially undiagnosed but suspected) syndrome for quite some time, and was curious about other people's experiences and feelings about it.
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Вакансии! [Aug. 7th, 2012|08:53 pm]

В центре психолого-педагогической поддержки семьи "Ключи" открыты вакансии:
1. Воспитатель в логопедическую группу для работы с детьми 3-5 лет. Заработная плата от 23 000 до 30 000 рублей. Опыт работы более 1 года, знание программы развития и воспитания детей в логопедической группе детского сада. График работы 5/2 с 9.00 до 17.00. В группе 8 человек, ежедневно работают няня и логопед. Возможно поступление собственного ребенка в группу на льготных условиях.
2. Няня для работы с детьми 3 - 6 лет, имеющими особенности развития. Заработная плата от 8000 рублей. Помощь в осуществлении ухода, гигиенических процедур, питания, прогулок. На группе ежедневно работают два педагога. Возможно поступление собственного ребенка в группу на льготных условиях.
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Work update.... [Jul. 21st, 2012|10:44 pm]

I finished my first week of work and I'm seriously thinking of quitting. I'm not feeling too hot so I'm a little cranky at the moment, but basically my job is scheduling me for shifts that I find are too long and want me to work 15-20 hours instead of the 12 I requested.

When I said that working more than four hours is difficult for me, the manager said: "but you won't always get shifts that are four hours."

I wrote on my paper application that I only wanted 12 hours a week, and same with the online application.

Within five minutes of working, I sweat uncontrollably with a/c, so I'm always tired during my shifts and I now know why I'm not allowed a stool as a cashier. There's too much going on, like having to remove sensors of clothes, having to put hangers and clothes on a return rack, etc.

I'm going to try to stick it out this week but I doubt I'll stay around after that. It's not worth running myself ragged for $7.25/hr at TJ Maxx.
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I did it! [Jul. 14th, 2012|12:44 pm]

I got a job, and I start Tuesday. I'm a little nervous, I've been out of work for years and I don't know how I'll handle it.

I asked for stool when cashiering but I was told that it wouldn't be possible, so I asked if I could bring water in to keep my hydrated as I get hot very easily.

I'm a little bummed about not being able to have a stool or chair but I'll do the best I can, I guess. And even though the hours range from 15-20 per week, I can do as little or as much as I want, so I'm going to work twelve hours and leave it at that.

For those who have not worked in a while and returned to work, did you find the adjustment hard?

I know this is going to affect my SSI but I don't care since I don't get much from it to begin with.
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Working while disabled [Jul. 10th, 2012|04:12 pm]

Hello all! I'm new to the community. I'm nearly thirty and lately, I've been thinking of going back to work on a very part time basis. I have Bipolar I, arthritis brought on by hypermobility, severe hypertension brought on by excess adrenaline (which also means I get hot and sweaty very easily), and chronic fatigue.

I left the work force some years ago but I've only started to realize that SSDI isn't cutting it. While I am grateful for the income I do get, it's not enough. Call me crazy, but I miss working and earning my own money. Sitting at home all day is BORING.

Ideally, I'd like to work something like 10 hours a week.

Any advice for someone who is trying to get back into the workforce? Also, what kind of accomodations would you make? I was thinking something like a stool if I end up cashiering, and easy access to water and ice (if applicable).
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