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debbie-b
12-14-2011, 05:31 AM
It looks like I am getting worse.
I have been working at my job for 6 years now. We get 3 paid personal days and 3 paid sick days.
The first 4 years I didn't use any of my sick days and was able to roll them over to the next year.
Two years ago, I used 3 of the 6 accumelated days. This year I have used all 6, plus all 3 of the personal days, on top of my 3 weeks vacation. I don't really call in sick, per say, I find somebody to take over my scheduled day and use a sick or personal day.
I have been "out" of sick days for three months now. My anniversary date is Jan.5 and I start back with 3 sick days and 3 personal days.
The thing is, I could really use them now.
Monday, I had to be at work at 5 am, unload 10 pallets( ca. 1000 cases, most of them weigh about 20-30 pounds) onto the shelves and from 9 am to 1 pm, I had to run the register. We sit at the register, but it is very hard work as well, because we have to scan 48 items a minute and it also requires heavy lifting.
Anyway, on monday I was in alot of pain ( even before I started working), plus I felt sick and very weak.
I actually cried, while I was unloading those pallets, the store is closed, when we fill the shelves.
I am so burned out, I feel like I can't go on.
Lately I get waves of weakness, where my arms and legs get very weak, I can barely lift my arms and my legs can barely carry me. It lasts about 30 minutes and than it goes away.
Right now, I am without meds, because of my liver. But even with the meds, I had to use my sick days.
I think that means, that I am at the end of my working days.
I have been trying to find a job in an office, but so far, no luck.
It won't be easy to get a new job, I am almost 56 and unfortunately, younger people have a better chance.
My only hope is, that my husband gets a big promotion, which is in the works, if his boss can aquire the new business, he is bitting for. It would involve a move to Maryland, but at this point, I don't care.
As it is right now, I am either getting a new job, or I have to stop working ( financially not possible), work until something happens and I am forced to quit and apply for disability.
Today I am off and I know I will be sleeping most of the day, to recharge my batteries.
Sorry for the long rant. I just don't know, what to do. All I know is, I can't go on like this.

Debbie

lizbond36
12-14-2011, 07:01 AM
sorry to hear the news Debbie, I use to carry 30 pounds plus now I can't even pull Milk off the counter. How sad is that :-( I am a full time mom for almost 10 years but I am pretty sure someone here will come along and help.
Hugs
Liz

rob
12-14-2011, 07:28 AM
Hi Debbie,

Coming to grips with the fact that I could no longer work, was one of the most difficult things I had to face as a result of my SLE diagnosis.

I applied for Social Security Disability not long after the diagnosis, and was approved about 6 months later. Something many people don't know about being on disability, is that you can still work a part time job if you are able to, without having any affect on your disability status.

A person can receive full SSA Disability Benefits and you can still work a part-time job if physically able, and earn up to $1010.00 per month on top of the full disability amount without having any affect on disability status or benefit payment amount.

The Social Security Administration considers any monetary income equal to, or less that $1010.00 per month to not be a Substantial Gainful Activity, and thus it has no effect on your benefit status.

It's an option that most people don't know about. I don't know if it's something you would want to do, but it's something to consider.

Rob

Oluwa
12-14-2011, 04:17 PM
Hugs Debbie...I am so sorry you are having a rough go of it.

Does your employer know you have Lupus?

My head is so full, fogged like an auto's windshield but I hope I can suggest something that will help. Do you get your annual SSA Statement? It usually comes a month or 2 before you birthday. It will state the amount you are entitled to if disabled. No two people SS disability income will be same, as it is based on our work wages and length of time working. I did a quick research about Lupus and qualifying for disability and I found this.

Look into this, for a start to give you some direction. Too, know you can hire a SS Disabilty lawyer, they only collect if you win. They are paid from the back pay benefit you would receive from the time you applied. Also, I am sure in the Financial forum here I had posted links about applying for benefits...check it out.

The Social Security Administration (SSA) lists Systemic Lupus Erythematosus under Section 14.00D1 and Section 14.02 of the Blue Book. SSA requests medical evidence of a Lupus diagnosis that will satisfy the criteria for "Classification of Systemic Lupus Erthematosus” in the most recent edition of the Primer on Rheumatic Diseases published by the Arthritis Foundation. These criteria include constitutional symptoms and major organ or body system involvement. In addition to this medical evidence, SSA requires that you meet the criteria under either Paragraph A or Paragraph B below:


Your medical documentation must show that at least two or more of your major organs or body systems are affected by Lupus AND that at least one of those organs or body symptoms is affected to at least a moderate level AND have at least two symptoms, such as severe fatigue, fever, malaise, or involuntary weight loss.OR
You have experienced repeated manifestations of Lupus with at least two of the constitutional symptoms (severe fatigue, fever, malaise, or involuntary weight loss) AND marked limitation of at least one of the following:

your daily activities,
your ability to function socially, or
completing tasks in a timely manner due to deficiencies in concentration, persistence, or pace.


Some links to read...
Very good read .. http://www.ssa.gov/disability/professionals/bluebook/14.00-Immune-Adult.htm
http://www.lupus.org/webmodules/webarticlesnet/templates/new_resourcesgovernment.aspx?articleid=168&zoneid=38
http://www.lupus.org/webmodules/webarticlesnet/templates/new_aboutintroduction.aspx?articleid=386&zoneid=9

magistramarla
12-14-2011, 10:48 PM
Debbie,
I faced the same decision in 2009. I loved my teaching job, but my health was getting worse and I was feeling that it wasn't fair to my students that I had so little energy to work with them. My hubby also happened to get a new opportunity placed in front of him. I did some soul-searching, and decided that it was time for a change.
I helped the school to find a new Latin teacher, and we moved so that Jeff could pursue his dream of getting a PHD.
It has been a good decision for us. I'm moving a lot slower than before, and I know that if I had tried to keep teaching, it wouldn't have gone well. We are having to survive one one income, but with all of the kids gone, it isn't so bad.
I know that it is a tough choice - it's like leaving behind a big part of your identity - but sometimes you have to consider your health first.
My thoughts are with you.
Hugs,
Marla

steve.b
12-15-2011, 06:49 AM
the decision can be one of the hardest ever.
when i gave up work, it cost me and my family.

the australian system is better than the american.....
but we still went bankrupt.
we lost our house, our car and all of our toys.

we went from over $160,000 pa to under $50,000

when rent is about 300 per week
and food is atleast 250.
you add up the change.

sometimes you need to take a step of faith.
before it is forced on you, and you lose the ability to control some of it.

if your employer is a good friend....
maybe you can apply for disability.....
and help at the registers by filling in on others sick days.
when they cannot work, the boss calls you.
that would probably remove most of the filling of the shelves.
and you could keep the pay below the governments threshold.

debbie-b
12-15-2011, 08:59 AM
Thank you everybody for your tips. It is very much appreciated.
First and foremost, I have got to say that not working is not going to make me sad. I have worked for 40 years and I don't think that I am going to miss it.
Oluwa, you are right, I get the summery from the SS Administration every other year and as of now, I would get about $1200.00 a month. This is enough money to make it on. BUT, I can't be without an income for about two years, until I get approved for disability.
Rob, you are one of the very few people who was approved for disability in six months. It usually takes 2 years.
As for working part time, once I have been approved, we'll be ok financially. It is just the time in between, I worry about.
But I know, that something could happen tomorrow and I won't have a choice but quit working.
Marla, I know how you feel about letting your students down, I feel like I am letting my co workers down. They have to pick up my slack and some of them are not happy about it.
Steve, I work for the largest grocery chain, here in the USA, even though my store manager is understanding, the upper management is not. The company rule is, either you can perform at 100 % all the time, or they will let you go. My store manager has allowed me to take every wednesday as my one day off, for the MTX shot on tuesday. That is also against the company rule, you have to be AVAILABLE 6am -10pm, 7 days a week. If you are not, they will let you go. My manager is taking a risk of getting in trouble for it. I know, it scrazy, but that is the sad reality of this company. Its all about bottom line profits, who cares about the people.
Anyway, thank you for everybodies input. I have to really think about, what to do next.
I am working 2pm-10pm, today. Right know I am feeling at about 30%, I am weak, fatigued, dizzy, I am coughing my lungs out, my joints hurt and my muscles are weak and painful.

Debbie

rob
12-15-2011, 10:49 AM
Rob, you are one of the very few people who was approved for disability in six months. It usually takes 2 years.

My father is a bit of a legal genius, and I had him handle my case and all the paperwork, and drive me to all the appointments. He hand carried every form to all of the various doctors and had them sign on the spot, rather than mailing it all and waiting. He also dealt with the Social Security representative at the local office who was handling my case in person rather than on the phone or by mail. He's very detail oriented and thorough with paperwork and forms.

I'm glad I had him to act as my representative/advocate, because I still had not gotten my flare activity under control, and I was so tired and foggy I would have screwed up the paperwork big time, and missed appointments.

Rob

debbie-b
12-15-2011, 10:56 AM
Oh wow Rob,

I had no idea, that your dad handled all that for you. He is awesome.
Should I get a lawyer right away and not even try it on my own?

Debbie

rob
12-15-2011, 11:14 AM
Oh wow Rob,

I had no idea, that your dad handled all that for you. He is awesome.
Should I get a lawyer right away and not even try it on my own?

Debbie

Most people I talk to who did it themselves, ended up being denied. They had to fight it, and eventually they were approved a year or two down the road. If you can afford a lawyer, I do think it would be wise to hire one and save yourself a whole lot of time and aggravation. There is a ton of paperwork, there's hoops you may need to jump through, and there are endless appointments and interviews.

All of Dad's years with the Treasury Dept. gave him an uncanny ability to understand bureaucratic systems and how to "game" them to make them work for you. Of course, I was also fortunate in that Dad works for free. Had he not been available to help me though, I would have ended up hiring a lawyer. Even without brainfog, paperwork has never been one of my strongpoints.

Rob

debbie-b
12-15-2011, 07:37 PM
Most people I talk to who did it themselves, ended up being denied. They had to fight it, and eventually they were approved a year or two down the road. If you can afford a lawyer, I do think it would be wise to hire one and save yourself a whole lot of time and aggravation. There is a ton of paperwork, there's hoops you may need to jump through, and there are endless appointments and interviews.

All of Dad's years with the Treasury Dept. gave him an uncanny ability to understand bureaucratic systems and how to "game" them to make them work for you. Of course, I was also fortunate in that Dad works for free. Had he not been available to help me though, I would have ended up hiring a lawyer. Even without brainfog, paperwork has never been one of my strongpoints.

Rob

I see ads on tv all the time, where the disability lawyer said, that you don't have to pay unless you get approved.
I'll wait and see, I will know, when its time.

Debbie

lucky7
12-16-2011, 01:30 PM
AWWWW, thinking of YOU Debbie! Its tough having to slow your life WAY DOWN because of being sick. I had to stop working too, it was WAY TOO MUCH for my body and me personally to handle anymore. Like Rob, just the brain fog alone was enough, and then addd in EVERY OTHER symptom, UGH!!! Good tips on SSI though! Thats a route to go if the time comes. Im going to apply for it and THANKS ROB for the info! SERIOUSLY! Carl and I are not that well informed on the steps to take. Now we have some good INFO to get it going!!!! WOO HOO!

Oluwa
12-16-2011, 03:17 PM
Deb....that is true. You do not need to pay a disability lawyer upfront. They are paid fromn the retroactive pay you will receive if you win. There is a cap on how much they will receive. The last I read it was $6000. If they win for you fees are capped at 25% of you back benefits but not more than $6,000, whichever is less. So, let your fingers do the walking through the yellow pages or the Internet. One referred from a friend would be even better...

See what they say..about the duration. I know of one person who received after one year, but I hear the usual is 2 years too. But ask the lawyer. Maybe they can win the first time around...and guide you how to do proper documentation and etc. Some have their own doctors they use..

Hugs..

magistramarla
12-17-2011, 09:05 PM
Debbie,
Be very careful about those lawyers who advertise on TV. I'm on a couple of other sites for overlapping diseases and I have read some real horror stories about some of them. I think that you should research carefully and look for a local lawyer who is very trusted in the community.
Hugs,
Marla

Linda From Australia
12-18-2011, 05:37 AM
Debbie I was on sick leave for 3 months and I went CRAZY. Even though there was no way I could work, I felt so miserable. I found it so hard when I love my job so much, and I had to go from full time work to nothing at all. From what many people have said on WHL, they were so glad they finally gave up, or cut down on their work hours. I am back working 2 days a week at the moment and I feel so much better having something to do. I know in a few years time I probably won't be able to work at all, but when that time comes, I will make sure that I find some things to fill the void.

I don't really understand the disability system where you are. I found out that my husband earns just over the limit so I can't go on disability, so we are trying to save as much money as possible for when I have no choice but to leave work.

I do hope you can find a quick resolution to your work situation, and find some fun things to do to help you fill the void.

Desleywr
12-18-2011, 06:03 PM
Debbie I was on sick leave for 3 months and I went CRAZY. Even though there was no way I could work, I felt so miserable. I found it so hard when I love my job so much, and I had to go from full time work to nothing at all. From what many people have said on WHL, they were so glad they finally gave up, or cut down on their work hours. I am back working 2 days a week at the moment and I feel so much better having something to do. I know in a few years time I probably won't be able to work at all, but when that time comes, I will make sure that I find some things to fill the void.

I don't really understand the disability system where you are. I found out that my husband earns just over the limit so I can't go on disability, so we are trying to save as much money as possible for when I have no choice but to leave work.

I do hope you can find a quick resolution to your work situation, and find some fun things to do to help you fill the void.

Hi Linda I understand with the disability pension here in OZ but have you applied for the Carer Allowance no means test and Carer Payment which get sans tested. I get the Carer Allowance or my husband does. My GP has put me on a Health Management plan and I get 2hrs cleaning a week, and when necessary ironing, washing being hung out, taking me to the shops, taking me to the dr when necessary, gardening for one hr per day per mth. For these home services $16.50 per hr and that is also gov subsidised as my husbands works. I also get $4,250 free dental work. Free phiso, oc therapy. this also was a big step to accept this kind of services just like when I decided to give up work or even as emotional when it was necessary to use a walking stick in public. Each one has an emotional time as it is a piece of independence. But there is a light to this tunnel..... I look at it as these services give me the time and energy to do something where I can enjoy life more and that includes time and energy to paint and I do get so much enjoyment from this. I just had to change my direction and make sure I enjoyed something that I could with this disease each day. This helpsme to be more positive and a nicer person to live with for my husband who also helps out so much. I hope this help?

magistramarla
12-18-2011, 08:47 PM
Desley,
Wow - that is a nice amount of help that you get. Australia takes much better care of it's citizens than the US does.
I would be happy with the dental care and the cleaning help. Those are two things that we could really use, but can no longer afford now that I'm not working.
I hope that Linda is able to get the same thing that you have.
Hugs,
Marla

Oluwa
12-19-2011, 12:03 AM
Marla, maybe it depends on what state you are in. In Washington, my friend who is on SSDI from a brain aneurysm I think it is DSHS that pays for someone to be her companion, take her shopping, help her about her house so many hours per week..by the hour. Next time we talk I will ask her. Maybe she qualifies for DSHS because her SSDI income is so low, as she also gets free dental and health care, and food card. Humm. Be well...Hugs.

Desleywr
12-19-2011, 03:06 AM
Here in Oz if my income was low I would get all for free but they may reduce some of the time of workers. It is still at half price e g for house cleaning $30per hr is normal and I only pay $16.50 with the gov paying the difference. I do appreciate what help I get and say that the local GP is responsible as many dr don't do. This as it is some paper work. I am so lucky to have found my GP and to get this support it really improves my daily living pressures and enjoyment! If I can do my ironing I do it but to know when I am having a bad patch I can get it done and that means I don't have to worry about that kind of things. Also when I get the cleaner in I also do what I can eg dusting and cleaning counters but if not good they do it. This still gives me my self pride!

debbie-b
12-19-2011, 05:10 AM
Thank you everybody,

I will carefully choose a lawyer, do my research and ask friends, if they may know somebody.
It is great how all of you are so caring, I greatly appreciate all your tips and thoughts.

Debbie