[abbyrition]

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?

[abbyrition]

I am sorely dis-heartened that this thread has been looked at more than 400 times, but no one has any advice or encouragement.
I thought this was exactly the place to find people with similar struggles, that would be able to have compassion and understanding because they've been there or are going through something similar.

With so many friends and family not knowing how to respond or what to say these boards have been a haven of information and understanding. Perhaps I am simply being impatint and or unclear on this particular thread...

[Jomar]

Many of those views are indexing search engines bots.

Here is the link for more info on our SSI/ SSDI forum - be sure to explore the sticky threads -
http://neurotalk.psychcentral.com/forum28.html

[abbyrition]

Originally Posted by Jo*mar

Many of those views are indexing search engines bots.

Here is the link for more info on our SSI/ SSDI forum - be sure to explore the sticky threads -
http://neurotalk.psychcentral.com/forum28.html

Search engine bots... Misleading indead then.

Thank you for taking the time to comment. I have been in that thread you listed and read through all the stickies a couple of months ago. (and re-skimmed to make sure I wasn't missing the answers to mine, or similar, questions.)
I'm not sure I want to start down the long stressful road of filing for SSDI yet. If I can get back to working, I'd much rather do that. The waiting is the hard part, and then the trying not to get myself in another flair too quickly, so I can stqy at work.
Since you pointed me in the direction of the SSDI thread is that the only option you see as viable from my story?
I guess I was optimistically hoping for someone who has been in a similar struggle with being out of work for months during a flair, but could go back once the flair was over would have some experience I could learn from. Since I'm hoping and trying to get back to work, I didn't think the SSDI thread was the best place for my questions - perhaps I'm incorrect?

[Hopeless]

Hi abby........

I am so sorry no one has replied other than Jo Mar. I am so sorry to hear what you are going through. That really is being stuck between a rock and a hard place.

I wish I had some advice to offer but I do not and maybe that is why you have had few responses. Maybe the readers just do not know what to offer you for advice.

I do understand your concerns. What type of work were you doing if you do not mind my asking? I think your idea of trying to work part time (if you are up to it) might not be a bad idea. An employer worth working for, should be happy to have someone with your dedication even if you have medical conditions that may prevent you from working full time. You sound like someone I would hire if I were an employer.

I hope you get some answers and advice from someone that can help. Sorry I am not able to offer you some good advice. I will be thinking of you and wishing you the best.

If you just need to vent, I welcome you to drop me a PM.

Keep us posted on how you are doing.

From Hopeless

[abbyrition]

Thank you Hopeless, I appreciate the well wishes too!
As for work... That's tricky. For the most part of the last decade I've been a Supervisor in the customer service field. For now, that part of my career is over I fear. Management never works part-time. Customer service may also be too stressful for me to maintain pauses in between flairs.
The very last job that I took that was low stress & Part time was in manufacturing. I made high end accessories blinged (I don't even know what the past tense spelling of using the word bling as a verb?) out with shells and crystals. Unfortunately the repeat use of my hands for the detail work caused me to lose all function in both thumbs. So this is also out for my future.
I have been a portrait photographer for 15 years, but to make money you have to be able to do volume in my field, and my body can't work at anywhere near that pace. (sad thirty year old mind in what feels like an 80 year old body). So I still do this, but only at one client a week - Not anywhere near a livable wage, or even keeping food in the house wage.
Hopefully I can get my docs okay to start looking at local part time office admin positions. My requirements are part time, preferrably a 3 day week (or flexable) during weekdays. I should be able to do the majority of the job sitting down. I'd LOVE a work from home position. (cutting out the getting dressed spoons to go to work I find very appealing.) And Low Stress.
Somehow all of that sounds a bit like a unicorn that I'm hunting.

[Hopeless]

Originally Posted by abbyrition

Thank you Hopeless, I appreciate the well wishes too!
As for work... That's tricky. For the most part of the last decade I've been a Supervisor in the customer service field. For now, that part of my career is over I fear. Management never works part-time. Customer service may also be too stressful for me to maintain pauses in between flairs.
The very last job that I took that was low stress & Part time was in manufacturing. I made high end accessories blinged (I don't even know what the past tense spelling of using the word bling as a verb?) out with shells and crystals. Unfortunately the repeat use of my hands for the detail work caused me to lose all function in both thumbs. So this is also out for my future.
I have been a portrait photographer for 15 years, but to make money you have to be able to do volume in my field, and my body can't work at anywhere near that pace. (sad thirty year old mind in what feels like an 80 year old body). So I still do this, but only at one client a week - Not anywhere near a livable wage, or even keeping food in the house wage.
Hopefully I can get my docs okay to start looking at local part time office admin positions. My requirements are part time, preferrably a 3 day week (or flexable) during weekdays. I should be able to do the majority of the job sitting down. I'd LOVE a work from home position. (cutting out the getting dressed spoons to go to work I find very appealing.) And Low Stress.
Somehow all of that sounds a bit like a unicorn that I'm hunting.

You really are in a rough spot. An "at home" position might fill the bill if it could be lucrative but that is really hard to find. You have to be very careful too of all the "scams" for making money from home that abound. Limiting stress is also difficult. I am not suggesting that you do the following but I have a story that may be of some value in expanding your possibilities. I know how I think with being limited by health issues and can't think outside the box sometimes so this is offered ONLY to open your thoughts. It sounds as if you have given much thought to all possibilities but I will share my story anyway. A friend of mine moved out of state and had a great deal of trouble finding work. (No health issues.) She works odd jobs (NOT as a temp) as a personal assistant. She house sits, dog sits, runs errands for elderly or otherwise shut-ins, etc. She is not making much money but she gets by and has no other means of support. The benefit is the extreme flexibility. The income varies but so does her time off. AT least she is her own boss.

As I said, I am not sugessting that for you but you may want to consider things that have never crossed your mind. Another friend reviews textbooks. Publishers send her books to review to see if they are written in an understandable fashion. I get stuck in my thinking about income producing ideas so I offer this info in case you get limited in your thought by your health issues.

Earning a living is very difficult for people with chronic health conditions. That is a general consensus from most people here. I realize nothing I have written is of any help but I wish I could be of assistance. Something may turn up for you that you never expected. I sure hope so anyway.

I am thinking of you and sending good thoughts your way.

[Jomar]

With the supervisory skills on your resume , that should help you to find some sort of lighter duty /flex time office type work..

[abbyrition]

Originally Posted by Hopeless

You really are in a rough spot. An "at home" position might fill the bill if it could be lucrative but that is really hard to find. You have to be very careful too of all the "scams" for making money from home that abound. Limiting stress is also difficult. I am not suggesting that you do the following but I have a story that may be of some value in expanding your possibilities. I know how I think with being limited by health issues and can't think outside the box sometimes so this is offered ONLY to open your thoughts. It sounds as if you have given much thought to all possibilities but I will share my story anyway. A friend of mine moved out of state and had a great deal of trouble finding work. (No health issues.) She works odd jobs (NOT as a temp) as a personal assistant. She house sits, dog sits, runs errands for elderly or otherwise shut-ins, etc. She is not making much money but she gets by and has no other means of support. The benefit is the extreme flexibility. The income varies but so does her time off. AT least she is her own boss.

As I said, I am not sugessting that for you but you may want to consider things that have never crossed your mind. Another friend reviews textbooks. Publishers send her books to review to see if they are written in an understandable fashion. I get stuck in my thinking about income producing ideas so I offer this info in case you get limited in your thought by your health issues.

Earning a living is very difficult for people with chronic health conditions. That is a general consensus from most people here. I realize nothing I have written is of any help but I wish I could be of assistance. Something may turn up for you that you never expected. I sure hope so anyway.

I am thinking of you and sending good thoughts your way.

I'm hoping! Out of the box - is my middle name
Right now in this flair, I don't feel confident I could do any of the things you suggest. (the running around, physical excertion, heck getting my own groceries is too much for me these days) I suppose it's up to the doc to get me out of it, and keep me maintained, now that we know what we're fighting...

Thank you again for the message of support. Your friends that do work with chronic illness, did they get their jobs after they found out? Did they disclose the accomadions they'd need in the interview, if no, when (if you know)?

[abbyrition]

Originally Posted by Jo*mar

With the supervisory skills on your resume , that should help you to find some sort of lighter duty /flex time office type work..

Here's hoping! The problem is now I'm over-qualified. The last interview I had, a few months ago I wasn't prepared to answer why I wanted a data entry job, when the work and the pay are far beneath what I'm used to. I don't want to lie, but I'm not sure full disclosure is appropriate either. Before the interview was over the interviewer said, I don't think you would be happy here with the position we have to offer. I attempted to let her know her position was exactly what I was looking for, but didn't get the call in the end...

It surely won't stop me from trying for the next one once I'm out of this flair, but I could certainly use some advice on how to interview and attempt to hold down a (even a part time) job while dealing with a chronic illness.

Thank you so much for your encouragement and supportive comments! Happiness and hope always help!