About this Blog
~Hi, my name is Courtney. I was a full time college student, starting to be a dancer, and used to work with kids part time, living on my own until my illness disabled me.
~I became sick in 2005. I created this blog in the summer of 2006 to record my "headache" diary and to see if anyone finds it interesting.
~12/2006 I lost my job then after, failed a year of college.
~2/2007 Dx Lyme Disease with Bartonella: prescribed 8 months of oral antibiotics. I'm not even sure if I ever had the Lyme Disease.
~11/2007 The doctor took me off medicines while I was still improving but not fully recovered.
~6/2008 Dx Chiari I Malformation by a neurosurgeon in Beverly Hills.
~8/2008 Decompression and Lamenectomy helped 80% of my problems.
~2/2009 Dx Hypermobility by an Orthopedic Surgeon/School Doc: Started PT, dancing, going to school and working.
~6/2009 Started working full time as an Infant-Toddler teacher, which requires lifting. Dancing part time, maybe I'll finish school eventually...lol
~12/2009 Dx Chronic Sinusitis: Stopped dancing due to constant infections.
~2/2010 Sinus Surgery & complication: Severe Epistaxis: Became severely anemic.
~3/2010: Dx Ehlers Danlos Syndrome: by Geneticist
~4/2011: Switched jobs, now work at a Pre-K teacher for 3 and 4 year olds. Less lifting!
~5/2011: Started PT and exercising again
ssi
has anyone had any luck with applying for SSI? I've noticed I cant work and i cant go to school now, i can barely go out and do an errand without feeling horrible.
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7 comments:
I can't work or go to school and I am basically housebound. I applied for SSI and got denied. This was a few months ago though and at the time I didn't know I had lyme so the diagnosis on the application was Chronic Fatigue Syndrome. Supposedly the diagnosis isn't what they are looking for but rather just at your ability to do things.
I put a lot of time and energy into the application. I was very thorough. They decided to deny my benefits before even receiving a report from my main doctor or from the doctor that diagnosed me or from several other doctors who have seen me throughout the course of my illness. Basically, they didn't wait for any paperwork and just gave it a 'no' stamp. I was pissed. I am currently appealing that decision and now have a lawyer. Lyme is now on th application as well but I don't know if it will matter. The system sucks.
I avoided applying for a long time because I kept hoping I would just get better. I also knew that a lot of people with CFS and/or fibromyalgia just get denied and have to go through a bunch of appeals to have a chance at winning and I didn't have the energy to go through it. I still don't have the energy but way too much time has gone by so I had to get started. If you are going to try to apply you should know it is going to take time and energy and if you get denied you only have a brief period of time in which to file an appeal and go through the next steps.
Things might work out better for you though. People see the words Chronic Fatigue Syndrome and they think 'lazy' or think it's 'all in your head' or any other number of offensive untrue things implying that you could be healthy if you wanted to or just tried hard enough or that the sickness is a figment of your imagination or there is just something wrong with your perception of the world. I know there is controversy about chronic lyme but at least the words themselves don't give uninformed people (by that I mean people who have never heard of Lyme disease, or people who know the name but nothing else) ideas about what that diagnosis means.
Anyway I don't know how pertient my experience is since I was applying under a different diagnosis but I thought I would share anyway. Also, from now on I vow to try not to make my posts so damn long!
Yes, I am currently on SSI now, and although I was denied three times before becoming accepted, I think it is well worth the effort..but I won't lie..it was a pain in the ass, trying to fill out all the paperwork and get all of the doctor records together. I was lucky, as I didn't have to attend the disability hearing. The judge looked at the records from my past Lyme doctor, Dr. R. (who I've still love to see, but he moved to New York City, and it's too far for me to go), and decided to award me disability benefits right then and there. I won my case last summer, but it was a year in the making. My only advice is to keep trying, despite all the denials you may receive.. they like to deny people a bunch of times, to weed out the fakes from the people who are really sick. I know, it's extremely twisted and sad, but that's what they seem to do. I wish you all the best, if you decide to proceed with this decision. :-)
thanks. I'm going to apply and keep trying like you said.
Best of luck to you--and hang in there with it! :-)
I wasnt going to apply for either SSDI or SSI because I have a medical needs trust fund for my medical needs...but, then recently we hired a lawyer because of our insurance company issues, and he really got into my case--and he got me SSI and SSDI within about 2 months :) I have seen about 30 doctors this year though--with written reports, there are 8 doctors who see me every month....and I have a very objective severe case...so it wasnt hard to get approved.
You cant only have Lyme as a diagnosis though, you will get denied, because according to them: Lyme is curable in 2-4 weeks--you should be diabled! (idiots!). SO you need to also put your "secondary" diagnosis' that Lyme has caused (I am diagnosed with 6 other things besides Lyme) I have also been misdiagnosed with about 40 other things too....if you DONT have "secondary" diagnosis' take advantage of you "doctors errors"...use a diagnosis that you dont really have...EX: if you were diagnosed with MS...use that. Not Lyme.
SSDI and SSI dont even give you that much money..so I dont know, its kinda a lot of work for not a lot in return, which is a shame if you really need it.
ALSO---Now once you are on SSDI it is so important to take whatever "large" money you might have in your name and put it into a "Supplemental needs trust"--this is a trust the Medicare/Medicaid cannot attach themselves to if you cant pay for something medical. Otherwise---they can, and will. You will need a lawyer to do that but you really should...also, doing things like Health care proxy's can show you are very ill that you would "need" that.
so i spoke to an attorney and he said i have to be out of work for a year at least or my doctor has to say that i wont get better.
should i wait to file? I think thats what I'm going to to. but in the meantime i'm going to gather all my medical records. ALL of them.
Thats not true. You will get better- and that is what the disability people WANT- that is why they are going to keep on re-evaluating you, and you will have to keep on top of your paperwork, and doing the evaluations.
If you can no longer perform your job, full time, part time, or a job that is similar or another job for the same amount of money--you are disabled.
You wont get approved based on Bartonella and Chronic Lyme disease- First of all- Chronic Lyme isnt even considered a disease as far as they're concerned, and with negative testing, forget it. According to them- Barontella should be easily cured in their minds--no reason for you to need SSI. This is what my Medical/Malpractice Lawyer told me about Lyme and Babesiosis--I am considered disabled because of Tertiary Lyme Disease primarily- but only because of all of my doctors and I had a lot of evidence, and basically beacuse I cant move or walk, and most of my doctors do not think I will get better, except for a few of the LLMDs who are "hopeful".
I guess my case is so "built up" with the doctor reports, tons of testing, specific pathology reports and MRI, CT, Neuropsych testing, and Spect scan findings....
This is where your other doctors mistakes come in---were you ever diagnosed with anything else?? Even Chronic Fatigue and Fibromyalgia are recognized, and people get approved more for that than for Lyme. I think some people who have Lyme or presumed Lyme, are on SSI for Chronic Fatigue Syndrome.
You will need to see a lot of other doctors, and get diagnosed with other things-- so you can be disabled from those.
Did he say why you need to wait a year?? Have you worked or gone to school in the past year?? If so, that could be why--the SSI people could say since you have worked/gone to school in the past year- you are well enough to do so.
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