Desperately in need of advise about disability (short and long term)

General
1

I am balling my eyes out. First, let me say that this post is about me needing your advise about short and long term disability. I need help from those of you who have filed and received it. Those especially that are under 50 when they put in their claim would be helpful. I am not being ageist, All are encouraged to post back and help.

I am 33. Like you, I have lupus. I have been dealing with this for a few years, but only diagnosed for 1.5 years. I can not get out of bed at times. I am proud of myself the days I go to work and can get through a whole shift. I then crash, become zombie like, and have nothing left in me. My days off are about resting so I can work. My work week is 20 hours at average. My boss says that I work about 60-70% of what they schedule me, and that’s after already giving me minimal hours to accommodate my illness. The pain is bad, but the brain and body function is what really gets in the way. The only time pain stops me from working is when it is head pain. Otherwise I work through it, unless it is bad enough that I keep crying. Then I stay home so not to upset people.

My moth and I share an apt. We split bills down the middle. So me filing for disability means that there could be no income on my side. Sure, I get the money back, if approved, but that does not pay things now. I don’t make much. I don’t need much, which is good. But what I do need is to pay my part. How does one pay bills when they are on short term disability or while waiting for their long term disability? My insurance said that short term, if approved, pays for a percentage of your income while not working. Is there other help? I tried before, when I was so bad off that I did not have money to pay my rent due to being out during a bad flare, to get help from a local Lupus Aid program. They never even contacted me back. I feel like I am between a rock and a hard place.

My mom, with gusto, tells me to apply for disability, then she turns around and tells me to take out a loan if I do that, so I can pay my bills while out of work income. I can’t take a loan. You have to pay a loan. I have no guarantee of getting disability, or when I will. It can take years. I don’t have money enough to pay for that. I don’t have money enough to get by even one month.

Someone help! I am beside myself. My body can not take this abuse I keep putting it through. My body is tired and in pain and shuts down so often now. I use my cane nearly every day. I don’t have any social life because I don’t have the energy to even talk on the phone. I want help. I need help.

How can I do this? How can I make this work? Please tell me how you guys did this. I feel so lost and broken. I can’t take this any more. Jehovah has gotten me through each day, which is all I ask. I need help to navigate this. Please.

Mindy

2

Hi mindy:) im 34 and was finally awarded disability in December 2013 after trying since October 2012. Honestly you're best off hiring a lawyer to represent you but they will not take your case if you're still working because it's a definitive denial. They get paid if/when you win your case. You really have to have the support of your doctor's/specialist and a lot of hard evidence of symptoms and conditions caused by your lupus that hinder you from living a normal life but even then your age is probably the biggest hurdle, it was mine. I submitted my first application in October 2012 and second January 2013, both myself and was denied. I was still working just enough to pay the bills and be within the criteria the state says you can still work and apply but still no luck. I called SS/Disability for some answers and was very honestly told" we WILL NOT take your application seriously if you're still working ! Even though I do look very sick on paper my fate of approval is in how compassionate the person is that my case goes to... they'll take one look at my age and lupus diagnosis and probably won't bother to read the rest before its stamped denied" so great!guess its impossible to be young and seriously ill?!?!whatever.... by April 2013 im sooooooo sick, now lung and heart involvement, systemic joint and ligament degeneration and a slew of other conditions brought on by lupus so totally stopped working! I hired a lawyer and thought im for sure getting it now:)nope!I'll never forget it took almost 5 months for a reply this time..I had chemo that day and my rheumatologist decided to refer me to John's Hopkins in Baltimore because I've failed every treatment and keep getting worse with lighting speed...so im hooked up to my chemo and my fiance walks in and says "those mother f##kers denied you again!" But you're only allowed to file 3 times then your off to trial but you'll have to wait upto 450 days for it yaaay! So my man got right on the phone with my lawyer and let them k that at this rate no one is sure I'll still be alive in 450 days and they better expedite! A week later I meet with my actual lawyer(not case manager, thats a different person) she was appalled the I was never approved and said it was clear NO ONE bothered to read my file and unfortunately its because of my age . She skiped my case past a trial and to a " court writer" and was approved within a few weeks! She is amazing! The "writer" was super pissed about my denials and wrote everything short of calling people morons for how long I waited, it was awesome! Even though I'd originally applied 14 months earlier I was not considered" disabled" until I officially stopped working in April 2012 then it's 5 month after then when they start tallying up your back payment!I only have just over 1 month backpay so my lawyer got paid about$350....well good luck with your journey!Unfortunately it's a roller so try not to let the process break you down!xo

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How does one pay for their bills in the mean time? How does one eat? I have no one to fall on for these things. No family. No friends. And if I do not pay my rent, I will be homeless. That will just push me to want to… No, I won’t think that. Okay, guys, please, someone has to have an idea. The lupus foundation of va does not have a Richmond chapter. I can not find any lupus assistance. Are all the walks just for raising money so they can keep putting more money in making medications to mask issues? I really hope some of the funds they raise are going to those of us who really need it. I am willing to be a poster girl if need be just to get help. I don’t have money. I do not have savings or anything.

Today, despite my condition, I rode my scooter down to the social security office. What a joke. The first one is closed up, re-directing me with a sign to the one down town that has a service rating of 2.7. Lol. So I go, even though I am about to faint and my body is begging me to just stop and…l and what? Half the time my body does not know what it can do or wants to do. It’s tired yet I can not sleep. It’s sick yet I do not throw up. It’s hungry, yet I can not eat. Ug.

Any way, there I am, and Jehovah gives me such a wonderful gift of being called up to the window, among a huge crowded room, with in 10 minutes of being there. That was nice, I thought. I still appreciate it, even though I now know its because my window was to set an appointment for some future date that they might help me. The woman, who was very nice and companionate, let me know that due to the generosity of my work, I make too much money. Even though I can barely get by and don’t know from day to day how I am to pay bills, I make too much money. I have to make less than 1,070 gross average for them to help me. Well, I have been with my work for nearly four years, so they pay me based on that, plus my diligence. I do everything in my power to do the best I can, no matter what my condition. So there I am, earning barely enough, and they say I earn too much for them to help me. I need to make less. Enough so that I am starving, in a constant flare, instead of the weekly ones, and possibly placed in the hospital from the stress on my body. Great idea! Yea, let’s just make things worse. How horrible that they reward the lazy and those who go for self pitty. How terrible that they are not willing to help people like us but are willing to help those who simply do not want to do for themselves. I do not know how to “work the system” and therefore and not able to be assisted? The idea is that I need to get better. The idea is tht I need to get help so that I can stop flaring so much and maybe get to a point that I don’t spend my days in bed or cooped up in the house because my body has failed me. I barely walk most days, yet they don’t think I need help? How does that encourage people to do what is right?

I work hard, harder than I should, because the bible tells us to slave as though we are working for Jehovah, not for some company or boss. So I work harder than my body says I can. I make money enough to keep fed and pay most of my bills. But not enough for doctor visits. Why do they not see that? Why do they not realize we need some other program to help us. I don’t want to stop working. I just need help. So then, do I just stop working? Get kicked out of my house?

Yes, yes I am venting. I appologize. I don’t have someone to talk to. So ignore my venting. I am sorry. I know these are your frustrations too. Thank you all for humoring me.

Okay, really, what do I do? She said to work less and to try and get an appointment some time in August to talk to them. August… I will live until them, Jehovah willing. I am not as bad off as some of you, in and out of hospitals. Yet that, I know well, is where I am headed. I am just too stubborn to go if it gets to that point. Everyone already knows I must be unconscience before I would be in a hospital. Upon waking I would argue the idea of being there. I simply don’t want to be in one. I don’t want to die that way, or live that way. What choice do we have, though, right? We do what we must. Even the most stubborn of us. I love you all and I know we can help one another if we just share.

Please, feel free to open up and offer any ideas. I need you guys. We need each other. No one else understands these things. These pains. My mind gets worse and worse. I struggle to get my hands to write. My mouth to speak. My fingers to type. Please, do not hold back even the smallest of suggestions. I welcome them all with joy and appreciation.

Thank you,
Mindy

4

Hi I just got your message
I am a 54 year old on disability now since I was 34
I was in a horribke auto accident that caused me to need several surgeries.
I have always dealt in pain and fatigue my whole life

5

Did you try calling that 1-800 number to the right?
Praying for you.

6

I just googled “any assistance for people with Lupus in Richmond area” up came “TONS OF FREE STUFF”. So I clicked on it. There is a ton of info, don’t know if any can help you.

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Mindy, first of all, I feel for you... my heart goes out to you! I will definitely keep you in my prayers!

You CAN get disability, but it may take a while. Does your state have short-term disability insurance? That's what saved me and my family when I had to stop working, before I was approved for disability. But I was living in California at the time, and CA has state short-term disability that kicks in within a short time after you stop working.

If your state doesn't do that, you will HAVE to apply for welfare of some sort. And food stamps, rent subsidies, whatever you can apply for!! Please do some research and find out what your local, state, county, and the Federal governments have to offer. The Lupus groups typically only raise money for research, not to help those with lupus directly. There are also churches and other organizations that can help you with food (food pantries), etc. There is help out there for those in need, but you may have to look outside of your usual circle of friends, your own church, you may have to stretch yourself to find it.

PLEASE get copies of ALL doctor's records (charts, notes, etc), ALL medical tests, all records of visits to the ER or hospitalizations, etc. When I went to my interview at the Social Security office after I applied for disability, I had nearly enough medical records with me to fill a little red wagon! It took the poor woman almost half an hour to copy what she wanted to, and she did not copy all of them by any means. I had so many diagnoses and so much evidence of my illnesses, they could not refute them. Plus I filled out their questionnaire about my typical day by telling them about my worst days ever... like that it hurt to breathe, it hurt to turn over in bed, that I was in bed most of the day due to pain, weakness, fatigue, vertigo, double vision, headaches, etc, etc, etc. You don't want to tell them about your best days, because it's your WORST days that keep you from working. If you come in with enough evidence to choke a horse, you will get disability. I applied in June and was approved in October the same year.

I did not need a lawyer, although my daughter Cheryl did (she was in her twenties when she was dx with lupus and Addison's disease). Cheryl was turned down the first time, but got it the second time, with a lawyer. I don't think that she had enough of her medical records with her, that was part of the problem the first time, the other was the age thing since she was in her late 20s.

Best wishes! I will remember you in my prayers!

JoAnn

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I was 33 when I applied all I had to do was fill out paper work telling them what my usual day is like physically, and my husband had to fill it out as well. I had to sign medical record requests. They got copies from all my doctors. I was luck enough that my husband made enough to support us. I got my approval in 6 weeks. I really haven’t heard this happening. Make sure you list every thing even the small stuff. I think I was pretty thorough filling out my paperwork. My husband didn’t do a very good job. I also see doctors regularly so all my medical records were up to date. I also have great docs. If you get fired then you should be able to collect unemployment which might help. I think the key is showing that you have done all you can to work and follow doc orders. I wish you luck. If you have any questions feel free to ask away! Feel better soon :slight_smile:

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Thank you guys. Joann, I appreciate your encouragement. The tough thing is getting to a doctor, do to money. So I hope what I have will help. I really needed your advice, too. Thank you. I so often feel guilty even talking about what its like for us. Thank you.



Age is absolutely a problem due to what the world expects from someone my age. Frankly, I have those same expectations of myself.



As for the web search, guys, every one hits a brick wall. They say they can help with medical bills, which I hope they will. I will need that. But nothing about living expense. That is the part that will be hardest at first. So I will see what I can do.



Short term disability seems the first step. And then I will just have to see what I can do. Thank you for yr prayers. Keep those suggestions coming.



Also, does anyone know of a local regular meeting group in the Richmond area? Their is a seminar that happens once a month at a local hospital, but I really need to just pow-wow with my fellow lupies and get advice and support. Like we do here, only with some hugs too. Lol.



Love to you all,

Mindy

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How often do you see your doctor?



Meme78 said:

I was 33 when I applied all I had to do was fill out paper work telling them what my usual day is like physically, and my husband had to fill it out as well. I had to sign medical record requests. They got copies from all my doctors. I was luck enough that my husband made enough to support us. I got my approval in 6 weeks. I really haven’t heard this happening. Make sure you list every thing even the small stuff. I think I was pretty thorough filling out my paperwork. My husband didn’t do a very good job. I also see doctors regularly so all my medical records were up to date. I also have great docs. If you get fired then you should be able to collect unemployment which might help. I think the key is showing that you have done all you can to work and follow doc orders. I wish you luck. If you have any questions feel free to ask away! Feel better soon :slight_smile:

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I may have to look it up again…I may have seen something called Lupus color…a website and think I saw support group

12

Hi Mindy

I receive long term disability thru work while waiting on social security to make a decision. I could not pay cobra so i have no medical insurance now. I had short term for 12 weeks then skipped a month and started long term. My long term takes back part of what i get if approved for ss and i make to much for food stamps. Before i went out i called my short term disability company and they were able to tell me about what i would make and the lapse time between short and long term. They also help fill out my ss for me.

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The worst case would be that you could apply for government assistance. You would have to apply for food stamps, which is income-based I think. Unfortunately, you would have to quit working for this. Also, welfare just sends you a check I'm pretty sure and is also income-based. I would call your local DHS (Dept. of Human Services) and tell them your situation and see what they can offer in terms of suggestions. I know this is not ideal, but it may lead to another suggestion or maybe they actually can help. I agree that it is very unfair. I have known perfectly capable people "working the system" with no job who even bragged about it. I used to work at a Medicaid clinic. Not to say that ALL people who receive gov. assistance are lazy, etc. by ANY means of course. It's just that the system is intended to help people like YOU, who are sick, but trying and working your tail off (when you probably shouldn't for your health). Instead, like you said, people who know how to "work it" end up with the benefits. NOT FAIR OR RIGHT. I will be thinking about you and hope you find some answers soon.

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It took me 6 months from the date of applying. There is a difference between SSI and SSD. SSI is for those who don’t have enough work credits. SSD is for a person who has enough work credits. A person can receive both. SSI takes a very long time but SSD usually does not take as long. When I asked the case manager who handled my claim why it was approved so rapidly. She said because I stayed on top of all medical documents and kept all appointments it proceeded rapidly. I live in NJ and I found resources. I asked my church who paid a month rent I also received assistance from 2 agencies that paid a total of 4 months rent. I also received food stamps. However I had no medical coverage but I have a wonderful MY who diagnosed
nosed me and was aware of my financial situation. You have to really look hard. It’s out there . All i can say is someone was and still is watching over me. I hate to sound trite but you have to keep the faith. I will put you in my prayers.

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Appñy and also apply for SSI food stamps and section 8 thats what i am doing you can work min 20 hours figure it out with your state

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It has been several years since I received disability & I received it due to chronic migraine (diagnosed with Lupus in last few years). I was able to get disability on my own (without an attorney) but I went through the entire process before I was approved. My opinion & advice is to start the process on your own. When I applied (believe it was 2001) I called & an appointment was set up. I received a letter & list of things to bring to appointment. I went to appointment & was given a packet of papers. While there my agent had me meet with their resource officer to see if we qualified for assistance while I was going through the process. If we would have qualified we would have gotten food & other assistance. I realize that was clear back in 2001 & they may have you do things online but - my point is I feel that it is worth a shot to start the process on your own - even if you are still working. You can always hire an attorney at any time throughout the process.

A few pointers:

Keep copies & notes of anything & everything - jot down phone call dates & times, copies of emails, forms filled out - any & all correspondence.

The questionnaire will ask questions such as ..how long does it take to clean your house - or are you able to do things for yourself such as drive, do laundry, etc... Basically questions about everyday activities. Answer honestly (I am in no way saying to lie, fabricate or embellish your answers) but you need to convey just how everyday activities affect you & your health due to your condition(s). A

patient advocate who helped me with paperwork in the beginning said - you need to make yourself sound as pathetic as possible - without lying. Sounds easy but when you are having a good day/week & you are filling out forms it is hard (at least it was for me) to convey just how bad you feel & how illness affects your life.

Keep notes &/or calender of good days & bad days. I kept a journal & a calender. But when I would get sick I wouldn't write in my journal for a few days or week & it was hard to get back to writing in it. I created a code to mark on calender. Since calender spaces so small I used smiley face or frown face to mark calender & other little symbols to indicate how bad it was. I made a key (like what find on a map to indicate what markings mean) on top of calender page. When I would mailed back my questionnaires I would include a copy (copy stamped) of journal pages & calender to show how illness affected my life.

You will also need references or witnesses that can attest to how your life is affected by your illness or injury. And yes at some point during process they will contact people listed.

I am so sorry you are having such a difficult time. I hope & pray that you will be able to get disability & in the meantime other sources of assistance.

17

I had short and long term disability from my employer. I also got a lawyer so it wouldn’t take as long. It took 5 months. You can not be working when you file or after. The stipulation is that you are applying because you are unable to work in any capacity.

It’s a rough ride. I know I’ve been there! You can try your catholic charities and other local charities to help you through but it’s a lot of calling and lots of work to get help. The disability attorneys usually have a list of places that help. Also your doctor may be aware of charities to help you as well.

Stay strong and trust Jehovah. He will make you a way.

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I’m sorry I said it wrong. You can work after but only for a certain amount if money or you loose your disability. Sorry for the error.

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I went through a place called Myers disability and had mine in six months and I applied for social services until it went through

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Hi mindy I too been there, I used to work 60 -80 hrs per week. Down to completing a 20 hr work week and short term disability, to termination and signing up for food stamp and medical from the state. I was dx in may of 2009, applied for ssi in august 2009. I was denied 3 times . Each time i appealed it and kept them updated on how my health was doing. I gave

every medical record I accumulated over the years from er stays and visits, pcp and specialty drs. In april 2013 I appeared in front of a hearing judge, crying how one illness can be so cruel. I went from a healthy person taking vitamin supplements and working 2 full time jobs. Now, I barely have energy to even get out of bed. It took me 4 yrs. In august 2013 I finally got awarded.