View Full Version : Many questions unsure where to find answers...

08-21-2013, 07:23 PM
Hello everyone!
I'd appreciate any tips, or advice, or even helpful stories, and just words of encouragement and support.

The short story is I am out of work due to my medical complications. We've gone through our savings and are now living paycheck on 1 income instead of two, and struggling. The Rhumatologist diagnosed me with Lupus and a secondary of Sjogrens. The meds haven't kicked in yet to get me out of this flair. So I feel a bit in between that rock and hard spot.

The longer story:
My last 2 jobs have let me go due to attendance, so I feel the more I continue working without the Lupus going into remission the worse my resume becomes, and all references are shot.
I was with a company for 5 years, until they let me go because my LOA paperwork was turned in by the doc 1 day late. I know for a fact they have let others slide on this, but at the time I was too sick to fight - I just didn't have the strength. When my flair stopped I took a manufacturing low wage job because it was low stress and stress causes flairs. I eventually had to go down to part time even at this job, until one day my hands stopped working. I kept my boss in the loop with making a doctor appt to figure things out (I was still undiagnosed during both of these firings) but she fired me over voicemail. Again being sick and terrified about my hands, I didn't fight. I couldn't do the work with non-functioning hands, so I understand her letting me go - it was just crappy to do it over voicemail. I had worked there a year and a half. So the last 7 years of my resume are worthless. (the previous employeer I was not fired from shipped our jobs overseas and closed up shop in the states, so also not a good reference.)
So if/when I can go back to work the odds are way stacked against me.

I'd like to go back to work, to feel productive, to have purpose, and simply to get out of my own house. My hands are functional again, but with stiffness and pain. The fatigue is manageable, but I have good and bad days. Some days it takes me 3 hours just to get dressed for lack of spoons. Some days I just don't get dressed. So how do I find a job that doesn't check references, pays a livable wage, and will let me call in sick on short notice (because I don't know I won't have energy in advance - sure would be nice to know in advance though.)?

I read on the ADA act that employeers are required to make reasonable accomodations for people with disabilities. Is that me? I haven't applied for any disability status, does one need to apply somewhere, or just by having the diagnosis is one entitled? How does someone unemployed find a job willing to make such concessions? Should this come up in the interview? It would be much easier for me to work from home, but wll I find are scams, or actual businesses that require you to already have expensive equipment to work for them, and I don't have the funds to put $500-$1000 into a PC and dedicated phone line. When I feel better and the meds get me stabalized I hope to look for something low-stess and part time, with the potential for full time and advancement. I'm concerned that working at such a minimum wage job will cause me more trouble than it's worth, what with my car not having a/c, living in the sunshine state, and my lupus meds lowering my immune system. It seems as if I'm begging another flair to come on as soon as I would be able to find this job one day.

Should I just apply for Social Security/Disability and get over my dreams of one day being normal enough to hold down a job? And seriously, I don't know when that day will come at the moment... Some days its just harder than others to stay positive. Currently I'm feeling a bit useless, and a drain on our finances.

So, I'm really not sure where to turn, or where to go next? Anyone have some advice or suggestions for me?

08-22-2013, 12:18 AM
You really should apply for SSI(disability), that way you are legally claimed you are disabled through the state. It really depends on what you are applying for to get disability accommodations some places would prefer you to be disabled through SSI and some instances will do it on a diagnosis type thing. Like before I finally was approved for my SSI I had my doctor write a letter clearly stating the limitations I have and briefly covered what lupus was and that worked well for extensions in my schools and the sun and a/c thing too. ALSO, when you get SSI you get medicaide so that could help financially, medical expenses are horrible! Look I know i'm young being 22 but after 8 years of lupus and dropping out of college and had to quit working I know how your feeling right now. I finally had to only look at the bills that were immediate and important because i'm in so much medical debt it makes me sick.
I am house bound for about 3 years, not everyone is like me and right now i'm just in a long flare so I get that useless feeling you mentioned. I have been doing crafts i'm really into that, I make a little extra money selling my jewelry and right now about to start selling my beaded Christmas trees. Maybe instead of going straight back into a minimum wage job take it slow, maybe babysitting or dog sitting to make a little extra money. I'm not saying go do that exactly but those were the things that jumped in my head and my head is too foggy to come up with anything else.

08-22-2013, 08:50 AM
I live in Australia ..... and our rules are very different. but what makes sense to me is .... apply for disability now. then you have a reason for having bad work references. you also have a safety net when you talk to your prospective boss. when I became ill, at one stage ..... I was on sickness benefits. when I applied for work, I told them my problems, and my goal to get back into fulltime work. then when I needed time off, they knew why. and they appreciated the honesty. also it is harder for them not to give you a job ...... because you have given them full disclosure ( not giving someone a job because of medical conditions is illegal)

08-22-2013, 11:52 AM
Thamk you both. I will talk with my doc at the next appontment. Just the stories and words of encouragement are helpful.