I have yet to "take the steps" to try for SSI Or SSDI....and I think that is because of All the Horror Stories you hear about the whole process.
The other reason is, I have a strong feeling I will be denied.
Another one being that, I FEEL I don't have enough Medical Information Documented on My illness....although I've been going to My Rheumatologist for a yr. now (I see him every 3 months)....I still feel like not enough is being written about how this Disease is effecting me.
So I decided, on My next Doctors visit...I will set the docotor down, and give him an ear full of My complaints.....this way, he can have more than "I have a pain here....And I have a pain there"....I will actually have stuff written down on paper of what I've been going through on a Daily Basis since He's last seen Me.
Having a Blog is helping Me in that area as well....if I don't have it written down, I will deff. forget about it....this way, with the Blog...all I have to do is refer back to IT....and go from there.
I pray that by the time I DO make that move to Address My Concerns with the SSI Or SSDI Committee....there will be enough documentation about Me, to be Approved.
Now I know it is a Long Shot....but it is one I HAVE TO take in the Near Future.How about YOU....any Horror Or Success Stories You'd like to Share??!!!
Naimah
Posts
5 Pieces of Advice
11 years ago
1 comments:
Hi Naimah,
Yes, it was Lupus ;-) I'm smiling now, a few years ago I was on death's door and looking like I had been dipped in boiling oil with lesions from (literally) head to toe. After a few years of doing the rounds of specialist and various test I decided to stop bouncing around looking for a miracle. My miracle was my own intuition, I needed to go to Johns Hopkins Hospital. I had been reading articles and papers written by Dr. Petri on the net for a few years and I knew she'd take me if I made the choice to give it a go. I am now in phase II of Medi-545, a biological drug that is going to be one of the first specific drugs for Lupus. I was in total remission after phase I, and now in phase II I'm in maintenance and holding. I still have some symptoms but I see one of the best Dr.'s in the world who specializes in Lupus every two weeks. After my remission ended and before I was offered and started phase II I applied for SS. I had thought about doing so many times in the past but I honestly didn't feel up to the fight and like you, was full of horror stories. I was not going to beg anyone for anything and after years of mysterious symptoms and baffling everyone except myself, I was tired of explaining my disorder. Lupus isn't even a disease, it's a disorder. I just didn't think I was up to trying to educate a federal employee on the terrors of Lupus and my extent of disability as a result thereof...ugghh. I knew from my social security statements that are sent every so often I was getting close to that 'window of opportunity' closing and I'd no longer be eligible for benefits. It was punt or go home time. I Googled everything I could find about claiming disability benefits, blue book info, and anyone's words that might guide me to getting it right the first time. I began to make sure I stopped saying 'good' and 'pretty good' when I was asked how I was at Hopkins. I started being very honest to get everything I could documented. I made sure those symptoms of Lupus that I experienced that made working impossible were clearly documented and I was seeking treatment for, In short, I wanted to give social security a trail to follow so even if I was assigned to the least motivated and interested social security reviewer it would not be difficult to 'see' what my daily life is like. I went to the social security site and opened an account and saw what was being asked on the work sheets they had to gather your thoughts and information. It gave me a place to start and although I wasn't planning on applying for benefits online, I wanted to know what they were going to need to determine my case quickly. The task seemed overwhelming at best. I had years of notes, testing, prescriptions and more that would support my story. I could hardly conceive anyone would wade through it all and attempt to see me from the inside out, look at life how I experienced it daily. So I decided to include photos of my lesion covered body, none that showed my face (one of the 'rules' is the reviewer doesn't decide the case from personal experience of that person, just the facts on the paperwork submitted). There is nothing like photos that will make you recoil in horror when you aren't expecting it. Sorta like Halloween scaries ;-) It seemed like a long shot at best and after I actually went to my local office, making an appointment first because I'm not always a patient person, I went in search of a lawyer that of course specialized in disability and personal injury but also had a medical background. I found one, I found two in fact fairly quickly. I then forgot about it because my daughter in law became quite ill and I had to spend some time on the opposite coast of the country. When I returned home there were two letters of enquiry from my caseworker and two messages on my hone phone service. My reviewer was very nice and when I tried to explain why I had not their deadline for extra information she shhh'd me and told me she was not a stickler for time limits, if she was she'd have to deny herself on a daily basis. I knew I was going to like her immediately. Let me backtrack and say I also enjoyed meeting my intake case worker at my local office. Yes, I said I actually enjoyed meeting her. She was kind, concerned, appeared genuine and not condescending in the least. I answered her questions and she said thank you and she was going to try to wrap my case up and get it off to the board in the next week to ten days. Really?? That seemed very fast, it had only been a little over two months. About a week later she called again to ask one last question about my prior employment. She then said she was done and to call her in a few days if I had not heard from her to find out if it went to 'Philadelphia' or sent back for further explanation. She told me that the board of physicians could disagree with her decision and return it for her to hash out with them, but she didn't think they would. I was a little stunned. I thought she was intimating that she approved me and it was in the final stages of determination. She said she took me back to January of 2006 and couldn't go back further because I hadn't submitted much that was document prior to that. I had to stop working in January of 2006 so I didn't think I needed to prove much prior to that, I wasn't asking for any benefits prior to that so no need, or so I thought. Go as far back as you know you can document, there are benefits of doing so. I was stunned to hear this, I wasn't sure what she meant by taking me back, back for what? For the back pay of benefits. Huh? OMG, who knew? I felt like I hit the lottery, literally. I think I was in a tiny bit of continued denial until my husband pulled the envelope from behind his back after teasing me with what did I want most to show up in the mail...hmmm? A check for over 18K !! I was afraid to jinx was I thought my reviewer was saying by asking how much she thought I might be getting. From what I could determine of how they calculate benefits I was going to get over 16K, I didn't allow for yearly cost of living increases they also lump sum you with. OK, have I given any of you the determination and the ooomph to 'get it done'? Start slow, research, research, research. If you found this blog you can find Google and everything you need to know to prepare your case and prepare yourself to spending more time on yourself and less on trying to bust your butt working to your own physical detriment. I had to benefits which you may not have and is why I wrote this note to Naimah's blog. I have been a nurse and I have been an insurance agent prior to Lupus taking me down, but not out of the fight. I used what I knew to help myself for a change. One of the skills I used was to listen to what was being asked directly and indirectly. One of the things my reviewer said to me was in an addendum to a letter she sent to me asking some detailed questions about my daily life. She was VERY quick to say, please don't send me ten type-written pages of how sick you think you are, I have all your notes for that. I want to know how having all of your symptoms and issues affects your ability to work, that's all. Plain and simple, how does having Lupus keep you from earning a living. Oh, OK. I can do that. I have two different creams to apply before I can dress every am, two handfuls of pills to get down and that is before I've even blown dried my hair. I can't go out in the sun, not between the hours of 10-4 anyhow. Those are the normal working hours of course. I can't work in front of a rounded back computer, copy machine, or sit under fluorescent lights. I am completely undependable. Lupus has a myriad of manifestations and wears a different mask every day. I worked for a small insurance agency and when you say you are going to be there, you need to be there. The state required at least one licensed agent in the office at all times. If I didn't show up, or was detained for any length in getting there, and the receptionist had to wing it on her own we were breaking the law and I could have lost my license and my owner-agent could have lost her license and therefor her business and source of income. I expressed I was down to worm farming on my back porch at midnight, or a professional bat-catcher. Even at home typing kind of things were not an avenue, Lupus arthritis affects mostly the extremities and my fingers and toes had seen lots of days of not being fit for use. There is hope is what I want anyone who is looking at climbing that mountain called disability benefits and convincing strangers that you are as sick as you believe yourself to be. I had made it as big as a mountain in my mind. In reality, driven by that fear no doubt, was the complete opposite. I would 'almost' go as far as to say it was painless and as pleasant as claiming any insurance benefits could be. Nobody likes taking their car to the collision center while you are talking to your agent filing the claim to get the money to pay for the repairs. But that is what you paid the premiums for, so what is to be ashamed of or feel like I have something to prove. I looked at it from the wrong angle prior to actually doing it. I don't think I had ever heard of anyone with less that a terminal illness, on dialysis, or in a coma to get thru SS on the first try and without a lawyer. They take your case on a percentage of your back pay is how I understood it from my research, but I'm not sure. As I said, I was stunned. In hindsight I think approaching the whole process as an insurance claim, rather than seeing it as a medical disability worthy of pity money...I know, I know...was why it didn't get caught up in a vortex of paperwork, or a tug of wills of determination. I had to change my thinking and feeling on the matter, do my homework by knowing how they list Lupus in the blue book (their reference for every disease and disorder they know of) and then letting it go and letting God have Her way with whatever happened. I gave it my best shot and it was not as bad as I thought it was going to be. I was surprised at that discovery I have to say, I really had it larger than life within my mind prior to getting started. Hope that helps and gives you courage and directions to the safest path to getting your disability benefits on their way. There is also another reason to stop delaying and get started. I also didn't know that after you are on disability for two years you are then placed on Medicare! I am going to save so much money on premiums and prescriptions. What Medicare won't pay for my husband's policy will. I know some of you are single parents and if you don't work you don't get paid and may not get your benefits. Or, many of you are working without benefits. Once you get approved you are also on the path to changing that potential pitfall into a security net.
Deborah
Realitychk@aol.com
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