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DEBHUT3 SparkPoints: (2,391)
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7/26/12 11:02 A

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Thanks, but we each do only what we can. The trick is to believe that you can.

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WHOA-MOMMA's Photo WHOA-MOMMA SparkPoints: (344)
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7/26/12 3:15 A

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DEBHUT3, You're an inspiration for sure! This shows all of us that we DO have options.

emoticon emoticon

SP ROCKS! I'm Making Progress! :-D

I'm an Artisan Jewelry Designer! www.etsy.com/shop/SchemesDeMonterey?
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DEBHUT3 SparkPoints: (2,391)
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7/25/12 6:14 P

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I actually was on disability for 7 years. I have an auto-immune disorder called sarcoidosis and had a lot of lung damage. I did have to appeal, but won on the first appeal. This was before I received the fibromyalgia diagnosis. They were slow in diagnosing this because the constant pain is also a part of the sarcoid. I also have severe arthritis, depression, and hypothyroidism.

However, I really hated being on disability and went back to work after about 6 and a half years. I had to start out at part-time and then worked up to full time. I ended up going back to work in a medical clinic and then managing the clinic.

Once my children were grown and out of the house, I decided to go back to college and fulfill my lifelong dream of being a social worker. I have my degree and have been working in the field for 8 years.

I just feel better when I am working. There are really hard days, like today when I am hurting bad, but I just get through them the best way I can. I love working and I love the job that I have now, working with people who are HIV positive. I can look at the people that I work with and realize that it could be worse for me. I also go home feeling proud of the things that I have accomplished that day. I realize that this approach isn't possible for everyone, but for me it is the best. I really hope that I never get to the point of not being able to work again.

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WHOA-MOMMA's Photo WHOA-MOMMA SparkPoints: (344)
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7/25/12 12:55 P

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I've been on Disability for 6 years. I'm 51 y/o. I was VERY Blessed to be granted SSDI on my first try!

I too have multiple health problems, including a blood test that came up positive for Scleroderma! I have an Anxiety Disorder; when I get too much on my plate I get severe social anxiety where I just feel like a scared rabbit in public. This was really tough for me when I was trying to attend College F/T in 2001-2003. I had YEARS of Emergency Room records and other medical records / tests for various physical problems... Recent surgery for Gaul bladder, Ovarian Cysts, Diverticulosis of the Colon, Hiatle Hernia (sphincter top of stomach), Migraines, HBP, and Diverticuli cysts on my Urethra, with one Fistula from a rupture that happened during childbirth in 2000.

I fought "The System" for several years, but my dragons were Social Services Counselors treating me like I was lazy or a hypochondriac because I couldn't keep up with a F/T load. At the time I had a 1 year old baby, and we had just escaped a Domestic Violence relationship with my son's father...

So, the Diagnosis of Limited Scleroderma, Written note from a Rheumatologist, (and a documented long history of multiple health problems), is what really did the trick for me! It was a blood test for Nuclear Ex-tractable Antigens (DNA) that read as "Autoimmune Condition".

The Pain Management Doctor I've been seeing for 5-6 years now has ruled out Scleroderma, but is VERY VERY Certain I have Severe Fibromyalgia.

It's a long and heartbreaking process for most people. I was very lucky to have mountains of documentation when I first applied for SSDI.

God's Speed!

Edited by: WHOA-MOMMA at: 7/25/2012 (12:56)
SP ROCKS! I'm Making Progress! :-D

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MARTHASPARKS's Photo MARTHASPARKS Posts: 2,718
4/18/12 10:33 P

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If you are still working, you will not be approved for SSDi. I am on SSDI and it took 3 years off work plus several comorbidities other than fibro to qualify. if you apply based on fibro alone, I doubt you'll get it.
1. Get all medical records and prescription drug records for at least the past 2 years from every doctor and every pharmacy you have used.
2. Get documentation of all medical leave, FMLA, and sick or personal days taken off of work for at least 2 years.
3. Hire a social security disability attorney. They are not paid until you receive SSDI, which is backdated to the day of your first application. The amount of payment that they get ismandatedby the federal government. If there is not enough from your backdated payments to cover their fees, it is deducted from the SSDI payment that you receive (on a low sliding scale basis) until the bill is paid. If the attorney wants money up front, LEAVE!
4. You are not eligible for Medicare until you have been on SSDI for 2 years. This is also backdated to the first date you apply for SSDI.
They backdate all of this because it usually takes a minimum of two years to get through the system because of the huge backlog of applications.
Good luck.

Martha
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I wish you all JOY and the fulfillment of your dreams.
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TROXIE's Photo TROXIE Posts: 25
4/17/12 2:57 P

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Hi 35NICKI,

I totally agree with LHUTCHUNS about all the paperwork, you have to have it. I also made sure my Dr. understood how it affected my daily life. ie: unable to finish a shower, not able to pick up my kids who were 1 and 4 at the time, unable to function on the weekends because I was working. I went to a psychiatrist initially because I thought I was depressed or post- partum depression. I do not know if you can do this but my psychiatrist was the one who eventually told me I could not work and then along with my regular MD they sent in all the paperwork. I got any paperwork I felt SS needed to see and they sent it in with it.

If it is your boss telling you this, have her write up a detailed reason why also.

Hope your having a good day.



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SASSYTHING52's Photo SASSYTHING52 Posts: 10,984
4/15/12 8:09 P

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well my son doesnt have money for doctoes or medicine or anything for 4 years just because hes not being treated they think hes not ill i guess

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LFHUTCHINS SparkPoints: (49,086)
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4/15/12 2:59 P

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I went on disability about 7 years ago and was lucky enough to find a disability lawyer who actually understood Fibromyalgia (along with a whole bunch of other medical conditions I'm dealing with). She told me up front about how long the process would take. One thing I learned was documentation is KEY! When I first met with her I lugged in copies of notes that covered my absences from work, how much I was paying out of pocket for medications, and how much I was paying out of pocket for "Alternative" treatments that my health insurance did't cover.

I.M.MAGIC's Photo I.M.MAGIC Posts: 12,839
4/11/12 12:45 P

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Allergic to unprocessed pork products... mild reaction to pork... and because of CKD can only have one serving of dairy a day--if THAT! lol

Makes menus a real challenge... thank GOODNESS for SP's nutrition tracker!

Kathy emoticon

"The real secret of success is enthusiasm..." thanks, Walter P. Chrysler. I believe it. That's what I want in my life--to give my imagination a chance, to live with energy and enthusiasm!

Ralph Waldo Emerson said 'Life belongs to the energetic.' But you don't have to be frenetic and hyper--some energy is quiet and steady, like a heartbeat... and that works too! LOL

Life comes in specific increments, which we receive as a gift of one moment at a time. That's why it's called


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GMA1948 SparkPoints: (133)
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4/9/12 7:57 P

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I am on disability. It took me 5 years and a lawyer to fly up from AZ. He specialized in fibromyalgia, cfids, etc. We were in the judges courtroom less than 15 minutes and we won our suit. I also, have cfids, arthritis, food sensitivities, and non-Hodgkins Lymphoma, major depression. emoticon I do volunteering at the schools and at church. It helps with my health and I just love the kids and helping them read. emoticon emoticon is today for me. Is anyone else out there allergic to soy, dairy, and has to go or had to go to gluten free?

I.M.MAGIC's Photo I.M.MAGIC Posts: 12,839
4/6/12 6:01 P

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I am on disability... but NOT for just the fibromyalgia. I have that, yes, but I also have diabetes, CKD (chronic kidney disease), sleep apnea, neuropathy, some kind of undifferentiated connective tissue disease my rheumy has no name for... and my colon cancer has been in remission for 23 months... and it took 2 yrs and a lawyer to get the disability. I qualified for backpay on four years... nice chunk of change but it disappears WAY too quickly!

Good luck... and get a lawyer!

"The real secret of success is enthusiasm..." thanks, Walter P. Chrysler. I believe it. That's what I want in my life--to give my imagination a chance, to live with energy and enthusiasm!

Ralph Waldo Emerson said 'Life belongs to the energetic.' But you don't have to be frenetic and hyper--some energy is quiet and steady, like a heartbeat... and that works too! LOL

Life comes in specific increments, which we receive as a gift of one moment at a time. That's why it's called


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TEENYSMOM's Photo TEENYSMOM Posts: 4,373
4/6/12 11:11 A

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Here's my story everyone:

My 22 year old daughter was born missing part of her brain. So SSI started sending us checks every month before they even made the decision that she qualified. She's been on it every since.

My DH became physically disabled in 2004. He filed 3 claims with the Soc Dept. Was denied each time. Someone suggested that we get a lawyer, which is what we did. The lawyer looked at DH's medical history and said that he more then qualified for SSDI. But even with the lawyer it took more then a year, on top of all the time that we had already spent trying to get SSDI for him, of fighting the Soc Sec office before they gave in and said that DH should be on SSDI. I fell that had we not hired the lawyer, DH may not have gotten SSDI.

Although the disabilities are different for my SIL, she too had a long & stressful fight to get SSDI. Also having to hire a lawyer.

Two years ago I filed with the Soc Sec office to try and get some help for me with Fibro, Chronic fatigue, migraine headaches, depression, scoliosis, and bad ankle. They flat out told me that if I was able to take care of my disabled DH, that I was NOT disabled.

~~Starr~~

HAPPY 2014. MAKE IT A FUN & HEALTHY YEAR!

"RIP MY SWEETIE, I LOVE & MISS YOU." MARCH 3rd 2014


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SASSYTHING52's Photo SASSYTHING52 Posts: 10,984
4/5/12 10:04 P

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rottlady may i ask how you made them listen to you

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ROTTLADY's Photo ROTTLADY SparkPoints: (43,095)
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4/5/12 6:06 P

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I have been on SSDI for a long time and I am not new to this disease. have spent my time fighting the system but eventually won.

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PATTY1728's Photo PATTY1728 Posts: 295
4/5/12 9:50 A

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I've been getting disability now since last November. Like you, I was missing so much work, and not able to do my job. I had a very physical job. My Rheumatologist would not treat me for the fibromylagia. However, he did refer me to John's Hopkins Hospital to their Rheumatology Dept. in Baltimore, MD. I got the paperwork I needed. I finally ended up resigning my job and retiring (I am 59). I had heard that there were companies out there that will help with claims. I found Allsup Place on-line. They did all the work for me. It took from April thru November, I got accepted first time. There is a fee, but I was willing to pay it. It was worth it for me. At least I have a little income coming in, and helps with the bills. I hope this helps you

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35NICKIE's Photo 35NICKIE Posts: 33
4/5/12 8:54 A

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Actually, my doctor is sending me back to the rheumatologist to see if they can think of anything else that might help me with the pain and fatigue, and she suggested seeing if they could fill the disability paperwork out there. So I am waiting for them to schedule that appointment and hoping that it will be soon.... It is frustrating and the last thing I need is more stress. It does help to see that I am not the only one dealing with this situation... I hope the best for all of you!!!!

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JEANNIE1238's Photo JEANNIE1238 Posts: 2,522
4/5/12 6:08 A

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I've been trying to get on disability for almost two years now. That is with help from disability specialist helping. I've been denied twice and am waiting to get a court hearing date. It's a struggle.



Virginia,MN

SASSYTHING52's Photo SASSYTHING52 Posts: 10,984
4/4/12 11:20 P

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well i know my son has be fighting disabilty for 4 years not just fibro but lots other stuff and where he dont have money to go dr they kept denining him

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GLASSALMOSTFULL SparkPoints: (1,522)
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4/4/12 7:52 P

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Could you go to a rheumatologist and have him or her evaluate your ability to work? I am having difficulty at work because I have to take off so much. I hope the best for you. Terri emoticon

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35NICKIE's Photo 35NICKIE Posts: 33
4/4/12 7:19 P

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They have been pushing me at work to go on disability because I have missed so much time and I am out of FMLA, vacation and sick time. However, when I went to see my doctor today and get her to fill out the forms she refused, saying she doesn't know enough about the condition to be able to say whether I can work or not. So now I am in a tight spot.... they are going to start disciplinary action at work and start working towards the process of terminating me, but she won't sign the forms. Anyone else run into anything like this and have any suggestions for me?

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