Crohns And Disability (SSI)

[Angee]

Ok so sorry but I just need to rant here for a minute. When I first started getting so sick 4 years ago I applied for Social security disability. It took 3 long years of fighting to eventually get it. The biggest reason I wanted it was for the insurance that comes with it, WE ALL know how expensive having Crohns is with all the meds and tests and such. Well I finally get it, and the money they give every month is pretty much a joke. I barely get enough to pay my rent, let alone bills and food. Every month it is a juggling act of who can I pay now and who can I push off for a little while with out getting my lights or phone or gas shut off...I dont even have cable as it is a luxury I cant afford. So I ask SSI about working while getting SSI, i know some speak of being able to make so much a month before they get cut off...well social security tells me I cant work AT ALL...they say if I am well enough to work any amount then I am truly not disabled enough for disability... I have so many flare ups I could never have a full time job, let alone a job good enough to offer decent health insurance...I HAVE to have insurance I am always having to go to the Dr and get meds and tests. Therefore I cannot give up the SSI. Its like a no win situation here and very stressful which doesnt help the crohns either. And I live in a pretty small town so it is hard to find one of them Special jobs that well.....dont have to be reported lol. ....OK im done just needed to rant for a min.:depressed:

 

[Guestly]

oh you poor thing - what a stinker, to be sick AND having to live hand to mouth on top of it all.

I've been having a whinge recently but at least in the UK we get our meds on the NHS...

The disability situation is rubbish though. My sister has MS, and she is on disability, she is blind, permanently exhausted, and yet every month she has to make her way to see some idiot at the benefit office to prove that she is still in fact blind and disabled... on her last trip she nearly got run over, and when she finally arrived at the benefit office, (in a state of distress because the prat that nearly ran her over had screamed at her "Are you F*ing blind?"... umm yes??), the idiot she was supposed to see was off sick and she got sent home again to run the gauntlett of public transport with her white stick.

It's just not bloody fair is it?

Lishyloo

 

[imisspopcorn]

Sorry. The first thing that came to my mind was babysitting, dog sitting, house sitting....I don't know if there is much need for that where you live. That is a hard spot to be in...vent away....

 

[Guestly]

OOh IMISSPOPCORN has a very good point for you... I have a friend who did a bit of pet sitting for people last year. Basically she would pop round to people's houses feed their cats, give them a cuddle, have a cup of tea and go onto the next house. For each pet she was getting £10 per day! It was great too becuase she could just pick and choose when to work... and she was only busy for a couple of hours per day...

 

[shazamataz]

I hear you, it is hard eh?

In New Zealand there are benefits which allow you to work 15 hours a week, which is what i do.

Sadly, though, it really still isn't enough to live on! Especially when you live alone.

I manage okay but I do have a couple of 'special' jobs too. I have a cleaning job where I clean someone's house. I sometimes hate that someone with a masters degree is doing this, but the people are so delightful I don't mind so much. They also pay quite well and also don't mind if I am sick - though I don't get paid if I don't go. But I very rarely miss it because one can usually manage just about anything for 2 hours right? I also do some photography and the odd therapeutic massage which is what I was almost finished training at when I got diagnosed - I can do one and then I am buggered!

the thing I hate is that I am not some lazy bum who doesn't want to work. I certainly never saw myself working part time and being relatively 'poor'. Sometimes you just have to work the system to get by. I don't like doing it, but feel like I have no choice.

Thankfully we are covered here with medical stuff, though you still have to pay for the GP and I do have to see here regularly as the GIs at the hospital don;t really want to know outside of sporadic scheduled appointments unless you are exploding or something.

When I was in the benefit office a couple of weeks back asking for help with my new expenses with Crohns I gave them receipts etc for about $100 a week and they kindly gave me an extra $50. While I am glad of the extra I asked the lady what I was supposed to do as this didnt cover the costs and all she could say was 'I don't know'.

She did suggest I could sell my house and move in with my dad (I am 38!!!) but then I would have money in the bank and not qualify for help - urgh!

We don't need the extra stress do we???

There, i think my rant equals yours! Good luck finsind some 'special' income - I won't tell

 

[egg]

I am sorry for you to, people dont seem to think there is anything much wrong with you because they cant see it, its not like having a missing limb. I am fortunate at the moment work has put my hours down to 30 a week still a bit of a struggle but I just about manage however this job only lasts to December so god knows what I will do after that, thank god for the NHS you may have to wait but at least you dont have to go with out.