Thank you, hopeless, for your opinion!

The place that I work at has an awesome opportunity of making money in a short period of time.. I get minimum wage, plus 2.25 for every delivery, plus tips if people would like to do so.

I love my job so very much and wish I could work it full-time. I'd much rather do that than be on ssdi.. but when I was working 20 hrs a week before ssdi, it put me in a horrible place- nystagmus, diplopia, slurred speech, ataxia, aspirating on beverages and saliva, bowel and bladder urgency, extreme fatigue.. gah. I was a mess.

As much as I WANT to say I don't need ssdi, it would be a complete lie.

I really, really dislike ms for the limitations it puts on my life. For the difficulties it throws at me for being only 26. For robbing me of my youth and causing super embarrassing moments that I have no control over (like losing control over my bowels while working 2 years ago, or not getting to the bathroom in time and my bladder losing control).

It has made me grateful for the smallest things in life and has strengthened my soul strongerthan I can ever could have imagined...

Just praying my body won't go back to those days and I can stay working these 2 itty bitty shifts a week.. having some independence again is such a spectacular feeling!

Thanks for all of your help!

Ayna - It's good to see you posting. I hope everything works out well for you and that you are able to keep working even if it is just a few hours a week.

The rules for SSDI and SSI are different. I don't know the rules but I think if you are making a certain amount of income and are on SSI, your SSI will rollover to SSDI instead. If I remember right, you won't lose your benefits. Once you are deemed disabled by SSA and unable to maintain gainful employment, you remain on either SSI or SSDI. I can honestly say that I am not sure which one I am on but since I get my "check" on the 3rd of the month, I am assuming I am on SSI. I do work a little from home and my income is around $200 a month from that.

Thanks tkirk!

It's great to know that I am not the only one that gets so confused with the ssdi stuff..

I do know that the ssi is what covered the months of not being able to work until the ssdi kicked in. So I got a few months of back pay from the ssi in November and December and just received the last payment a month or 2 ago, all while still receiving ssdi since September.

Had I not been super stubborn and naive I would have had back pay since 2009. But I tried fooling myself and said to heck with it, I don't need disability. And gave up fighting it.. then later that year I saw a side of myself that I never thought would be possible and took a step back to realize it was, unfortunately, a necessity in my life. it's a terrifying experience to have your body in such rough shape, especially at the age of 25. That scary thought of 'what if I don't come out of this?' And have it last for a month or even longer.I must say-us ms warriors are some pretty brave and beautiful souls.


I love working. Back when I was 18-19 I was working 50+ hours a week as a server. And loved every second of it.

The money I make at my current job-if I was able to do full time or even 20 hours- I'd be able to live comfortably in my OWN house. But that's not in the cards for me anymore.

I wish ms would just go away and never show it's face again. Too many restrictions. And I hate that.

I'm glad you're able to do a little work from home stuff! Is it crafty stuff? Or more along the business side of work from home?

I do a little bit of medical transcription from home. It's been so helpful in supplementing my income and giving me something to do.

I wish I could figure out how to sell the art stuff. I have so much of it laying around. The biggest problem is having to ship it and not being able to get to the PO or UPS store to send it.

I do miss working a traditional job. I miss the daily interactions with others as well as the intellectual challenges. I am glad you have an employer who is so understanding and so accommodating. That makes all the difference in the world. You are very fortunate.

I feel like fortunate isn't a good enough word
I am forever grateful for my employers (and many, many other things and people in my life). I must be special

That's awesome that you're able to do the work from home, tkirk! Stimulating for the mind and provides a little extra cash! If you had access to a printer and a reliable scale, you could go online and pay for whatever weight and they should be able to send you a download print off thing to put on the package and your postman can pick it up.. at least, I think that's how it works.. something to check in to.. especially if you have your own art you wanna sell