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Debster1971

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 #16 
Hi everyone! I am new here and just had some questions.  I was actually diagnosed with discoid lupus back in 2003.  I have completely stayed out of the sun since then and haven't had any lesions spring up-thankfully!  At the time the dermatologist  told me after my biopsy that it was discoid lupus and that one day it could go systemic.  I started having extreme fatigue, aches, headaches and cognitive problems really starting to get bad around 2010.  I just tried to push through, but each day got more difficult for me.  I finally seen a doctor at our local clinic in 2013 and she did the ANA blood work and it was positive for SLE.  I have since had 6 positive ANA's and been to several rheumatologists.   I am 45 now and have recently applied for disability.  I have severe lupus brain fog and cannot remember things at all (dropped out of college 3 times due to this) and tried 4 different jobs in about a 7 month period.  Either the work was too physical for me or just too mental to learn.  I am very depressed over all of this and don't know what to do :(  I have worked my whole life and this lupus is totally destroying my life :(  Just wondered what ya all thought about trying for disability or how any of ya's can work with these horrible symptoms.  I just talked to a psychologist (disability appointed me to) and he said "how could you work if one day you aren't fatigued and then have extreme fatigue for weeks solid?"  Not sure what to think of all of this, but it's driving me nuts to not work :(  Any input on this would be great!!
Thanks Much~
Deb :)
Robinj

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 #17 
Hi Deb
I have DLE as well and the fact is that only approx 10% of DLE patients go on to develop SLE. 

SLE is dx'd by a number of factors including symptoms and labs and the ANA is just a small part of that.There is no one "test" that is positive for SLE.
This is a great article:

https://www.hopkinslupus.org/lupus-info/diagnosing-lupus/

The reason I am saying this is because you said you have been to several rheumatologists. Are they all dx-ing you with SLE? It can be a long and uphill battle to be approved for SSDI and most folks here have been denied before getting approval and most would say a lawyer is a must.
Hope this helps.

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Cakelady

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 #18 
I agree with Robin SLE is hard to dx and you really need your doctors to back you up. Without good doctors to back you up your chance of disability is slim I am sorry to say.
Even people with good doctors to back you up it can take 3 years to get approved and sometimes it all comes down to a judge deciding.

A lawyer is a must. I was having seizures and stuttering and was doing cytoxin treatment every month for a year and the SSA doctor said I would be approved and I was still denied. Then I got a lawyer and he appealed. I won on appeal but not everyone is so lucky. And just because they approve you doesn't not mean you are not going to have to keep proving you are disabled. You will have to continue to prove it

Good luck

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Debster1971

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 #19 
Thank you for your response. And yes- all the rheumatologists I have been to have diagnosed me with SLE :(  I am wondering why they sent me to a psychologist and not to one of their medical doctors instead? Or if they will still want me to see one of their docs.  It's so frustrating!!!! But I am praying I have enough in my medical records (Lord know I have tons of those) to help me get approved. I guess it's just a waiting game now :/  And now I just had a recent diagnosis of scoliosis in my back and degenerative disc disease.  This is so unfair :(

Thanks Much :)
Miss.takenbylupus

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 #20 
Where are you guys located? I'm in Canada so the systems vary but I am going to apply for a form of disability and I'm sure it's very difficult to get here too. I don't think I'm going to apply for our provincial disability program because from what I understand it's heavily monitored, I can't work fully if I wanted to, and you can only have so much value in assets. Are you able to own your home, or have a vehicle? Where I live it costs me less to pay a mortgage than it does to pay rent. I would like to keep some kind of collateral in case my body really bites the big one. The bus system takes hours to get to any location and walking to the bus stops/station is really difficult and gives me so much anxiety. Does anyone know more about restrictions to the program?

I will however apply for the disability tax credit. It's not an income by any means but it will definitely help with income taxes and covering some mobility/prescription costs. I believe you can reassess your past 7 income tax returns for as long as you've been diagnosed. I was diagnosed in 2010 so if everything works out then this should hopefully *fingers crossed* help me out. Does anyone have difficulty with the disability tax credit (I'm in Ontario). I have a good relationship with my doctors now so they are on board to help push this through as much as possible.
Cakelady

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 #21 
Mr. Bun is in Canada maybe he can give you some information. Canada does things way different then we do in the states
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Mr. Bun

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 #22 
Miss?

CPP disability is hard to get.  Your best line of action is to contact your member of parliament.
They will help you very much.  At least they did for me.

It was a difficult time for me to admit I simply couldn't work anymore without harming myself.

Service Canada has the application forms.  I gathered all possible lab reports, doctor notes, a full list of doctor's names I had or was still seeing.  Once I had everything I could include with the application, I wrote a 4 page cover letter.

This letter, I believe, was instrumental in getting me approved.  The person sitting behind the desk, who would be reading my application, had no knowledge of me at all....it was my responsibility to tell them in clear, chronological statements, what my state of health was in, as well as my current financial situation.  CPP is not based on your assets/finances.  It is based on your contributions through your employment history.  

First....I introduced myself and told them my age, living arrangements and employment history.  Then I gave precise medical information. Point form....no emotions. Next, I told them how it affected my ability to perform tasks daily.  I had a family member read the letter and offer any ideas how to improve or shorten the letter.   Any statement I made had medical information included to support my claims.

I had to go on welfare.  It takes 4-6 months for a CPP decision to be made.  It was humiliating and a terrible struggle.  I shopped at the food bank.  I notified my rental office of my circumstances and kept them informed.  It was a dark time.  But it was nothing compared to my struggle to perform at work.  I lost many friends.  And the one thing I hate the most is the look of sympathy I get when I run into former "friends".

For many days and nights I worked on my application package.  My doctor was fully on board and asked why I hadn't applied sooner.  My pride was the reason.

It is not a fun thing to go through.  And I have the blessing of a sister who is my best friend.

Any contact you have that will help you, be it your member of parliament, your doctor, your family.......rally them around you.  You will need the support.

Two of my best supporters are here on this site.  One recently passed away.

Take care, hope this helps,

Bun
Mr. Bun

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 #23 
Yes, Miss.....in order to qualify you have to meet their definition of "totally disabled".  You cannot be able to work at all.
You can see their point......if you can work.....then work.

I started to bleed out at work.  That was my last straw.  The physical labour and daily stress of my job was killing me.

And yes, you can own your home, cars, have money in the bank, RRSP's etc.  The disability tax credit can go back 10 years.  Don't go to one of those firms online.....you can do the application yourself....they will only take a big chunk of your refund.  They are crooks.


Miss.takenbylupus

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 #24 
Thank you very much
Mr. Bun

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 #25 
welcome!

what knowledge I have I will gladly pass on.  Lupus is sh!tty.  anything that makes it less sh!tty......helps.

Bun
Cakelady

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 #26 
Just to clearify if you live in Canada follow what Mr. Bun says to do. She's been through it and knows what to expect.

If you live in the USA and are filing for SSDI get a disability attorney. Yes they will get part of your back pay but they are limited to how much they get. If you keep getting denied and you have to then go before a judge the attorney's fee changes. It is very rare in the USA to get approval the first time around unless you are terminally ill. Also keep in mind your attorney does not get a cent unless you get approved. So it's in the best interest of the attorney to work hard on your case so you get approved right away.

I thought I could do it on my own and the ssa doctor even told me I would get approved. 3 weeks later I got my denial letter I was shock but my case manager was not. That was in mid to late January she had a disability attorney contact me. I filled out the paperwork sent it back to them. They were in another state they called me on Presidents' Day to go over it they filed the appeal that same week I was approved the second week of march. So having an attorney can make all the difference

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Robinj

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 #27 
Great advice :)
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When the first baby laughed for the first time, its laugh broke into a thousand pieces, and they all went skipping about, and that was the beginning of fairies. 
Mr. Bun

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 #28 
That IS great advice CupCake.

Even though I got a new little girlfriend for Christmas....you'll always be my number 1 !!

(raggedy Anne is p!ssed)
Cakelady

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 #29 
Just stick the witch in the closet and when moo isn't looking grab her credit card and book a flight to California I'll pick you up at the airport :)

Oh I forgot to tell you. At my grandmothers 90th birthday party on S a t u r d a y I thought of you when I opened the gray goose vodka bottle

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Mr. Bun

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 #30 
Grey Goose?

A lady after my heart.  Moo is quite vigilant at keeping an eye on me......since the last time she left me alone......and the cops were called.....credit charges (and delivery.....buns don't drive) were discovered for vodka and rose wine (Anne loves it....she's a lightweight).

Bail for me was set relatively low......but an espense nonetheless.  She's still p!ssed about it.


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