Help, Disability Question.

[Christrd]

Quick back story.
I was diagnosed with WG back in october of 09. I was scared and confused but I didnt let it bring me down. So I went back to work right away. I got married and moved from LA to Omaha in 2010. Here, I found work in Omaha right away and a Dr to follow up with the WG. Everything was going fine untill January of this year. I began to feel tired and fatuige for no reason. I had shortness of breath and my legs felt like they were on fire. It had gotten so bad, thet for the month of July, I only worked for 6 days. I had filed for FMLA, so my employer was ok with me missing work. One morning I felt like a Train had hit and I could not stand on my own two feet. So I made the decision to not return to work. An old coworker asked why didn't I apply for Disability? She said that one of her relatives has a similar case and was approved for disability and got Medicare. The Medicare would really help me out since I now have no medical insurance. So I filled out the Questionaire from the Disability website and sure enough, I had an Interview the following week. I was adviced that they would gather the remaining medical info that was needed and I would have a responce by the end of August. I recived a letter August 10th from them. It explained that my condition did not qualify me for disability. Today I had my 3 month appointment with my Dr. I explained to him that I had applyed for disability. He said it would be very hard to get disability and I may not get it....I dont know, somthing about how he said it did not feel right. He later explained that the disability office had requested my medical records. He said that ever since I have been going to his office, I have shown to be ok. I told him that I was not doing ok I needed help.

Long story short,
Can I apply for disability if I have WG? I have an appoinment in two days with an attorney that specializes in disability law. I just dont want to waste my time and his.
If there is any info that would help me out, let me know. Thank you.

Chris.

[Lightwarrior]

Chris,
I am in the process although it is a bit different from your process. Through my job we have a long term disability insurance that I will be going out on soon. I understand that they apply on my behalf for Social Security Disability and then deduct the amount Social Security pays me from what they will pay me. I will try to share any tricks i learn as the process unfolds. I do know that quite a few of the Weggies on this forum already have disability so they can weigh in with more information.

[Christrd]

Lightwarrior, Thanks for the info. I hope it goes well for you.

[Debbie C]

Christrd..I replied to a thread before that before all this I used to work for SS and Workmans Comp attys.I have been on medicaid and collecting SS for 2 years.(Actully starting Sept. 1, I will be automatically switched to Medicare..I just got my card earlier this month.You can definately get help..its sounds like yr Dr. didn't do anything to help you...his comments are probably what got you turned down.If I were u you can file a appeal yourself but u need to do it quickly ,they only give u so much time.Then gather every medical record you can from when u were first diagnosed to now (also find another dr. if he thinks your are doing well !!!) You can call or go down to your local your local SS office or go thru the attys. (they will get a good bit of your money) but go to the appt.they can give you a free consult on your next move. Also go to job and family services ( if thats what is called there) and apply for food stamps,cash assistance,and medicare(for your medical help).If you Google what WG is,print it out and take it with you along with all the records you can get.Hope this helps.

[annekat]

I got disability with no problem... possibly helped by my age of 59 when I applied, plus that I was making so little money at my self-employed business that I was under the limit of income that is considered to be "working". It would seem that if you had to quit work because of Wegs, you should qualify, though maybe a certain amount of time would need to have elapsed since you stopped working. There are so many ins and outs to it that I can't even remember most of them.

I agree with Debra that your doctor doesn't sound like he helped you much..... he said they asked for your records, but did he send them? I never even talked to my doctors about it and don't know how they feel about it, but I assume they sent the records and said at least some helpful things in my favor. I would think that under the system the doc would be required to at least send the records. If you are in too much pain and discomfort to work, I think a disability lawyer should be able to help you and it wouldn't be a waste of time. If he thought it was, he would tell you.

I also agree with Debra that you should probably look for another doctor. Is the current one a Wegs specialist? Not all of us have specialists, but if you can get one or a doc who will consult with one, it would be a good thing. Check the Vasculitis Foundation website for specialists. It sounds like you were doing OK but then had a major flare or extreme worsening of symptoms and they haven't improved. Did your doc do anything about any of that? I can't imagine him thinking you are OK. But sometimes we see our docs for such short visits that how could they really know how we are doing?

Good luck.

[KathyB]

Hi Chris,

I'm going through the process now myself (age 56). The Virginia Retirement System already denied my application but I'm appealing. I haven't heard from SS re my application. My understanding is you have to be out of work (showing no income from work) for a certain period of time. I was told a minimum of a year, but I think it depends on your circumstances because others have have gotten it in a different time frame. I expect to be turned down by SS for now since I only stopped receiving a paycheck as of July 1 when I medically retired. I'm frustrated with Virginia, but am holding out hope. My rheumy wrote my initial application and it wasn't very thorough, so my appeal was packed with info re WG including anecdotal info and two letters from doctors (rheumy and PCP included). I used a PowerPoint of Dr. Seo of Johns Hopkins and added a lot of extra research notes including info re WG being on the SSDI List of Impairments. If it doesn't work, I'm getting a lawyer! I don't know how else to get them to understand my inability to work and the need to be safe from germs (I'm an educator surrounded by kids and others in community all the time). Best of luck!!!

[Christrd]

You got me thinking annekat. I dont really know if my Dr sent in the info needed or if he really wants to help me. My wife said that he made a wierd face when I told him that I would no longer have insurance. Im going to check out the vasculitis foundation website so I can see if I can find a Dr here in Omaha. Thank you so much.

[Christrd]

Thank you for the info. I read it yesterday and right away I went the the nearest family service. There, I was able to apply for Medicare, and for the Snap program. I am gathering all the info I can get to take to the attys tomorrow. And I do have all of my past records with me so I will take them as well.. Thank you so much. I really felt bumed out yesterday untill I read your reply. Thanks again

[Christrd]

Hey guys. Hope you are all doing well. Here's a quick update. I felt like the disability claim was going nowhere and felt like my lawyer and Dr weren't really interested in helping me. So I decided to go back to work. I took a job here in Nebraska as a manager at a auto parts store. I would feel fine in some days. Others where not so good. My hands and feet would get numb for some reason, never happened before. I would get dizzy spells as well. December of 2014, I got one of those dizzy spells at work and had an accident. A 30lbs heavy duty Rotor fell on my foot. It felt like I had broken my big toe. Had to go to the ER and get it drilled to drain (relief pressure).
A few days later, I went in to see my specialist and found out he was gone. Now the head of the clinic was seeing me. Dr Palmer. He was very interested in my desease.
My wife made the executive decision to take me out of work due to constantly getting sick for some reason. We re applied for Disability but this time hiring a layer from Heard and Smith. They got to work right away. I was denied 3x already. In February of this year, we got a letter that stated that we will have a hearing 12 to 18 months.
Oh and anothe fun thing that happened this year. my blood pressure was being stubborn and would not drop from 130/90 and thats with 20mg of lisinoprill. So Renal Dr decided to add another pill to the equation. Was doing ok for about 3 days until our trip to target. I was walking and started to sweat a lot. My chest started to hurt. My wife looked at me and said I looked purple. She sat me down and took my pulse. ( she graduates this October to be a Nurse). I felt like a couldn't breathe. Wife took me the the ER and sure enough it was a heart attack. I was put in observation. Next day, my renal Dr came by and was speaking with the cardiologist. He came in to speak with me and asked how I was doing. Then he said to stop taking the new medication he had prescribed. I asked if that caused the heart attack but would not give me a direct answer. So yeah. I'll keep you guys up to date. Hopefully frequently so I won't write so much. Lol.

[Lilly]

Hi Christrd, My wegeners timeline and basic health with the disease is very similar to yours. Diagnosed in 1990, lived with small flares, treatments, but I was young and just pushed through the pain and I lived a basic normal life, (married in 1990) I live on the Gulf Coast, so I rode stand up jet ski (difficult, needs much balance) and kept in shape with aerobics, weights, etc. Then in 1999, moved north to central Alabama, Tuscaloosa-Birmigham area for husbands work. Throughout the entire time, I have always worked a full time job. Sometimes two. Living in our new place was a dream...we lived in the middle of the woods, 5 miles down a dirt road. I got a Jeep Wrangler and we drove for hours in the woods and explored areas and just totally enjoyed it. We lived around the corner from an old boat launch that we could use and go out on the Black Warrior River and play and boat all the time. Living a dream! Then in 2009 I started having problems with my knee. I had 3 arthoscopic surgeries but they all failed. I eventually had to have a total knee replacement. In this time, the sicker I got, the more my husband became distant. I could not do all the physical things we had done for so many years. He expected me to keep pushing along like I always had, but so much damage had been done by wegeners over the years, and my getting older, just made it hard for him to accept the changes that were happening. We divorced, I moved back to Mobile, and lived with my Parents and had my knee replacement surg. Then came the question of how would I support myself. I did have alimony of $650. a month. But I had to pay for my insurance, and copays, medication, etc. So I looked for a job, but no one would hire me. After a year I decided I would apply for disability. It was my only chance for a normal life, and being able to take care of myself. I applied, and was turned down. I did like you, I hired a disability attorney....I could tell he was completely uncertain if I would be accepted because my illness was so vague.....I did not LOOK sick. So I went through the process of getting all my last 5 years of medical records from my doctors at UAB, and all the eye surgeries, nose surgeries, sinus surgeries, (you get the idea) and my otarlarongologist (?sp?) who did bronchoscopies, and throat treatments. I wanted to be able to show the progression of my disease, and also a letter from my Rheumatologist, stating the disease is not cureable, and it is treatable but also is destructive. And you will never heal from what it does to you. My Lawyer also gave me a simple form to fill out each time I went to a doctor. Each time I went in the hospital, had surg., etc. Just to show how much I was having to truly take care of this disease, and the time was obviously too much to be able to hold down a job. I did this for a YEAR!!! I finally had my day in court. The judge sitting above me, and a recorder on the table below, where I was at, facing the judge...2 ladies on one side with computers, and another on the other side typing everything that was said. I was terrified. My arm was in a soft cast from a surg. I had recently, but other than that, I looked NORMAL.....So, the judge looked through my medical information (tons of it) and looked angry.....I was hiding my arm. I had my hands in my lap, under the table. She began asking me questions. She was questioning the many different doctors I had....and what was this illness I had. I just said it was a very rare disease, difficult to diagnose...but once I was diagnosed, I had to be monitored with bloodwork. (I kind of let her dig some of the information out of me, because I just did not want to seem like I was trying to over explain everything) She just stared at me.....and asked me what happened to my arm....I explained that I broke a tiny bone in my hand, but it wont heal because of the meds I take, so they put a tiny screw in it. She looked puzzled.....then asked about my knee. Same thing....She asked if I had looked for a job...I had, and told her my problems about that, little necessary dr visits and surgeries. I told her I was miserable, I always worked, I wanted to work again in the medical field like I always had. But I was just so tired, and I was very upset that my life had changed so much. (she mentioned my divorce...and actually asked if it was that due to my illness...kinda personal I thought, but I answered truthfully-yes) So, my Lawyer was right next to me the whole time, and he never said a word. He actually just stared at me like,.....He wondered how I was gonna get the judge to understand this insane disease, and give me, this normal looking, well groomed, young lady, approval for disability. But in 2 weeks I got the letter.....accepted for disability....going back 3 years! Wow.....surprise. So I received 3 years back pay, $2000. taken out for the Lawyer, and now I was able to afford to live on my own, and take care of myself. It was a stressful ordeal, it was not easy, but somehow it all worked out. Getting a Lawyer is your best chance to be taken seriously. Plus, honesty and years of medical information. I hope you get the disability. I felt like it was a big "D" on my forehead, like having to get disability was saying I was just a big old sicko who had to live off the government, and my life as a normal person was over. But with the support of friends and family, I realized that I deserved this disability more than lots of people who have it, and don't really need it! Also, I was able to find a part time job I went to 2 days a week at a Dr. office, verifying Insurance....I could handle that, and when you have disability, they encourage you to work, if you can, but they give you an amount that you can make a year. if you go over that, then obviously, you are not disabled! Best of luck! Blessings and Love, Lilly