posted
So at 31 yrs old, I have to file disability, in the prime of my life, giving up a nursing career, if I even make it any further, as I get sicker every day, despite 8 mnts of treatment.
Do you generally get approved for chronic lyme disease, since the government does not even recognize this as an illness? or are the people that are on it have another diagnosis they put down? or did you put multiple diagnosis down?
Also was anyone able to go on disability for a while and then come off of it and return to work? thanks
Posts: 229 | From Forty Fort, PA | Registered: Feb 2012
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
How to Get SSI & Social Security Disability: An Insider's Step by Step Guide by Mike Davis
The author says, "Too often I have had to deny a claim when I thought there was a genuine disability, but the case was not complete enough to render a favorable decision. What I have tried to do in this book is give the reader the information needed to present his or her case fully, accurately, and in the best possible light. I believe this will increase the chances of a favorable decision dramatically."
Look through the reviews, some of them give you more tips.
Posts: 6956 | From Lancaster, PA | Registered: Feb 2004
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
it was easiest for me to use arthritis cuz the xrays were clear
a test with a very clear dx is better...
harder for fibro or lyme with questioable test...
i know its supposed to be on "function" -but there is less writing and easier to convince them when there is a concrete pos test
good luck
when you go on ssdi they give you a way to try to get back to work...make sure you understand it
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Your story, like so many others, breaks my heart. You said... "Also was anyone able to go on disability for a while and then come off of it and return to work?"
Actually, yes! This does happen and I've seen it happen multiple times. So hang in there and keep the faith!
Hoping you feel better soon and do NOT beat yourself up over this. That won't fix anything.
posted
Yes, you can apply for, get SSDI AND get off of SSDI and restart your career. I have done this once already in my early 20s and was able to be retrained into the IT field. It is way less expensive for people to be productive citizens than to keep us on SSDI forever.
It is also not about Lyme Disease the diagnosis. The applications process should be about documented symptoms whether or not related to Lyme Disease or not.
It's time to take care of your health, without your health, your career means nothing in the long run because you'll be too sick to enjoy your field of expertise.
I was able to get onto SSDI this year first try, for the second time in my life. If you would like to PM me, I'd be very happy to guide you in any way that you may find helpful.
Hugs,
Edessa
Posts: 138 | From Eden Prairie, MN | Registered: Dec 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- No intent to criticize here but more venting my sadness at how I feel with the term "on" SSD and how it is perceived by so many who are not facing this reality.
This just hits a nerve.
I cringe at the use of "on" with "on Disability" as if it's a hand out. It is not.
It is everyone's disability INSURANCE COVERAGE FUND that we have PAID INTO with deductions from every paycheck.
We are applying for disability INSURANCE benefits, receiving INSURANCE benefits or (hopefully) regaining health as we move forward and re-engage in our careers.
I know that "on" is just the way our language seems to work. I just had to say something. I know that when I talk to others, especially those who are not ill and don't have a clue about the serious nature of this, I make an effort to never say "on" SSD or "on" Medicare.
With most who put "on" in front of either program, I can hear the disgust in their voices, as if anyone "on" such "programs" is less that a valid and hard working citizen.
Some of many not still be working at a paying job but we are engaged in mighty hard job of getting better with very little medical support to do so.
Medicare is my insurance plan. We pay for it, too.
I wish everyone ALL the tools necessary to find their way back to health. SSD is just one tool that so many require. It's a tool more that a program, the way I see it. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Keebler-I know it doesn't sound good at all, and I know I should think of it as I paid into it too, I'm only 31, but have probably worked as many hours as at least a 35 year old or so probably more, so I've contributed.
Believe me I don't think anyone on here on disability should not be or has a free ride, I should have been on a long time ago, I'm a nurse and was passing out collapsing at work. lol.. no lie. I give everyone credit for taking charge of their health.
We really shouldn't say it like this, yes your right I think it is more of a tool for me, it can provide me the rest and peace of mind so I can maybe get better and return to normal.
It's just scary and I'm afraid of the long process involved and everything.
Also does any one know if I can apply and then in the meantime, I'm going to try to work what I can , probably in between taking more fmla, I just want to try and hold on to my insurance for now. Or will they look at that and say you are working so you are capable?
Posts: 229 | From Forty Fort, PA | Registered: Feb 2012
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Rivendell
Frequent Contributor (1K+ posts)
Member # 19922
posted
Hey Shannon,
It is much easier to win your case if you are not working. And I understand not wanting to lose your insurance.
If you still have insurance now, get all the testing you need to prove you are disabled (x-rays for arthritis, tests for nerve damage, Tilt Table Tests, anything that supports your symptoms).
Once you have that, if you can afford to see your doctor without insurance, it would be better not to be working.
If you must work, let the doctor know how the job affects your health and makes you worse. How you must miss days.
Make sure the doctor lists all your symptoms and how they affect your ability to work in his/her office notes. (This is important whether or not you are working)
Also, you don't want to work too many hours, or you will be seen as gainfully employed and will not quality for disability.
Look up "gainfully employed" on the Social Security Disability website.
Be sure and save any warning letters from your employer about your absenteeism, poor evaluations, etc. These can help your case.
www.jamesdisability.com has some good forms for your doctor to fill out to document your condition.
See also the website: "Disability Secrets"
and the website of attorney Scott Davis who represents people with CFS/FM, etc. He has good advise.
It is better if you don't use the diagnosis of Chronic Lyme and instead use Chronic Fatigue, Arthritis, Autonomic dysfunction, etc.
A good resource book is:
"Nolos Guide to Social Security Disability: Getting and Keeping your Benefits"
The library should have a copy of this book.
Posts: 1358 | From Midwest | Registered: Apr 2009
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Dogsandcats
Frequent Contributor (1K+ posts)
Member # 28544
posted
List out the symptoms you have from Lyme.....fatigue, arthritis, pain, migraines, .......
List out all the things you can't do because of Lyme. Work, fix dinner, drive, walk, bending, etc Keep the list current. This information will help you to fill out the paperwork.
I had retired from my career and had started my dream-going back to get my Master's. I was about half way in when Lyme hit and I had to stop. It is hard and discouraging. Focus on getting Lyme treated and with good treatment and strong will-it can happen and you might just work again.
-------------------- God will prepare everything for our perfect happiness in heaven, and if it takes my dog being there, I believe he'll be there.
Billy Graham Posts: 1967 | From California | Registered: Oct 2010
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rivendell-the thing is I see my doctor now without insurance paying anything and also my iv's out of pocket, it's my oral antibiotics and lab work..
It takes at least 6 months to be approved also I think, what do you do in the meantime, I mean I might be able to come up with money to live but the oral meds and lab work I can't go at least that long without. That's my dilemma.
I am on FMLA right now, I'm on somewhere around 7 weeks, this has been on and off for a few months, so maybe that will help me?
Also so I shouldn't mention chronic lyme at all? I have the diagnosis of fibro/cfs for years now and all paperwork and bills from going to the doc all these years. As for tests, I have no one to order them for me, my doc's office, it's terrible trying to get them to fill anything out. and when I was diagnosed from the neurologist yrs ago with fibro, she didn't order any tests.
Maybe I may have to try and return to work, idk, why is this all such a nightmare, I believe if it wasn't for fighting the insurance companies, explaning to people, and convincing person after person I'm sick, all the stress, I'd probably be better now.
Posts: 229 | From Forty Fort, PA | Registered: Feb 2012
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Q: " I shouldn't mention chronic lyme at all?"
Correct. Only with your LLMD.
[editing to try to clarify this murky topic]
Your LLMD will have listed all that so you don't need to mention it again. On forms, they are now more concerned with symptoms, what you can and can't do.
In some states, though, the term "chronic lyme" can hurt you. In your state, I think they are more aware than most but still, it's up to your LLMD to list diagnosis, you list the practical stuff that is the RESULT of any diagnosis.
This topic is very confusing, I know. Until the CDC and the IDSA will accept that "chronic lyme" exists, it's hard to know who out there understands and who will reject.
Your state & local lyme support groups will be able to tell you MUCH more in this regard.
SE PA has a wonderful group. Contact them for advice:
posted
ok, then how does that work when all my notes from doc and lab work says lyme disease? just wondering, I'm new to this , never applied before.
Isn't it pretty rotten that you can't apply and get approved for your actual condition?
Posts: 229 | From Forty Fort, PA | Registered: Feb 2012
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posted
There is an attorney in the East Bay here who helps folks with Lyme get disability. Maybe you could contact her and see if she could steer you to people in your area who could assist you. www.barbaraarnoldlegal.com
Don't feel bad about being young and needing to get some disability - if you need it, you need it. Then you have the future to deal with getting better and see how you're doing.
Posts: 13171 | From San Francisco | Registered: May 2006
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
You can get approved, you just have to be extremely detailed about every single impairment caused by Lyme...don't just list Lyme as the only impairment.
There is some misinformation concerning mentioning Lyme disease or not for Social Security Disability.
I listed Lyme Disease, every single co-infection, as well as every single way these diseases impair my husband: fatigue, cognitive impairments, low testosterone, skin ulcers, pain, high blood pressure,etc, etc.
He was approved the first time.
You have to be extremely thorough. Listing every single impairment and have medical evidence to back it up. I listed every single Dr he has been to over this horrible journey...yes, I even listed Lyme Dr's so that they could get his records as evidence.
I know from personal experience that the Social Security examiners care nothing about the politics of Lyme. They are just looking for evidence that your impairments equate to disability under their rules.
Also, when I went through a continuing disability review this past fall, I listed every single impairment: Lyme, Ehrlichia, Brucella, Anxiety, Depression, fatigue, pain....and was approved ongoing.
P.S. Also document all of the absences from work due to your impairments.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- In my state, the SS staff do care about lyme politics and have refused to admit even the most glaring positive test result to a case. But, in my state, the state medical board (and their strong IDSA ties) has been directly responsible for that anti-lyme approach by the Social Security regional staff.
Trying to clarify what I wrote above about about the diagnosis coming only from your LLMD, not you for forms,
you list the practical stuff that is the RESULT of any diagnosis.
This topic is very confusing and experiences vary, I know. Until the CDC and the IDSA will accept that "chronic lyme" exists, it's hard to know who out there understands and who will reject.
Your state & local lyme support groups will be able to tell you MUCH more in this regard and guide you as you seek the support you need to get better.
SE PA has a wonderful group. Contact them for advice:
posted
ok thanks everyone- I really appreciate everyone's input. really
one thing I want to share-I spoke with an advocacy rep or whatever, it's when you go to the ss website and it has you fill out some short info and then they contact you and tell you how to proceed
the man called me today, took a lot of info from me,it was very disappointing.. He basically told me even w/the diagnosis of lyme, cfs, and fibro no one is going to take my case, mostly because of my age and that I have no tests from neurologists or rhematologist, or anything from a pain management doctor. And for the most part I am able to perform adl's, even though I told him I am getting help right now with grocery shopping , cleaning, etc.
Well I don't have anything from the rheumatologist because around here the good ones take about 6 months to get an appointment with, my work changes insurances at least once a year, so I had to cancel a few appointments and I'm not going to one so they can also tell me chronic lyme does not exist and I don't even have lyme.
I also haven't had the time or energy to go to a pain clinic. Also I have tried many pain medications and they don't touch the pain, even narcotics, or I would be on them right now.
He had no interest in any of this.
I had told him I wanted to try and return to work next week so I can keep my insurance a little longer and I think this is what actually made him not believe me. Well it would be the same as it's been for over a year, I am at work, not mentally, getting sick and collapsing on the ground.
Anyway, my mom works for social security and says she sees lyme diagnosis for disability. It was probably hard for them to get but Im gonna go with lyme, cfs, and fibro and go with syptoms like people suggested. I also have int.cycstis diagnosis which I've seen a specialist recently for. I'm going to apply, not go back to work, if denied get a lawyer.
My only thing is I don't know if anyone knows but I know this could take forever, if I am out of work, have no income, will medical assistance accept me even if I have not yet been approved for disability?
Posts: 229 | From Forty Fort, PA | Registered: Feb 2012
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Sorry to hear of your phone call and dilemma. It's rather typical, sorry to say.
Your mother may see lyme diagnosis in her SS work but my guess is that she does not see awards with that as the sole diagnosis very often. Big difference between the diagnosis and the award criteria.
Much depends upon the state in which she works, too. Even region to region within a state can have major differences in the way they accept or reject the kind of diagnoses that we deal with. It's not as uniform as one might think.
Contact this group for some guidance in how to proceed. Others have been where you are - there are ways to manage so hold on.
posted
thank you. I was looking up some info also on resources while being approved for disability and I guess there are like housing, and others. I hope anyway. And yes, the assistance for meds will def help.
Posts: 229 | From Forty Fort, PA | Registered: Feb 2012
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Rivendell
Frequent Contributor (1K+ posts)
Member # 19922
posted
When you fill out your form, if you have depression, anxiety, or other psychological symptoms due to illness or had them before the illness, list these. Very important.
If you are not seeing a therapist, they (SSA) will send you to a psychologist/psychiatrist for a mental evaluation. Don't be afraid. This is very important. If the doctor finds you to have major depression, or something else, this can help you to WIN you case, if it is lacking, otherwise.
It would also be good if you are taking an antidepressant, anxiety med, for example.
Also, if you are in a lot of pain, with no tests to confirm you condition and no doctor, they will send you to a doctor for examination. Be very thorough with them. They might send you for x-rays or some other tests which might help you.
Also, it would be good if you are taking pain medication, even if it doesn't help you. Also, even if it is over-the-counter. And it would be good to mention that it makes you drowsy and interferes with working, if it does.
It is important to mention everything and so easy to forget these things when filling out the form.
Also, SSA will try to discourage from winning your case every step of the way. Ignore them.
Do a search for Scott Davis attorney for CFS. He has some really good advice.
Also see the website "Disability Secrets"
Posts: 1358 | From Midwest | Registered: Apr 2009
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OptiMisTick
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posted
[ 05-22-2013, 03:04 AM: Message edited by: OptiMisTick ]
Posts: 1338 | From Above the Clouds | Registered: Nov 2000
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OptiMisTick
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Member # 399
posted
[ 05-22-2013, 03:05 AM: Message edited by: OptiMisTick ]
Posts: 1338 | From Above the Clouds | Registered: Nov 2000
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posted
thanks everyone, I have decided I am not returning to work, there is no way I can work in this condition. I didn't file yet.
I am seeing a lawyer this coming week, he said he would be happy to take my case, in the meantime I saw a lawyer at a free clinic just quickly but gave some tips also pretty much said you need to let them know you are not capable of working or taking care of yourself,
not able to make your own meals, clean grocery shop or pick up meds and you have some one do them for you..
Posts: 229 | From Forty Fort, PA | Registered: Feb 2012
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posted
optimistick-yes I think he heard my age and when I said I may return to work to keep my insurance and he just didn't hear anything after that.
I contacted public housing in my area and they told me section 8 is closed for 3 years, i don't know I'm in pa and that's what they told me.
so I called ceo in my area and they said I can apply for rent assistance through them. they have people in my situation, but I can't apply until my rent is officially late, I am paid up until oct 12, so i can apply oct 13, I was just trying to get ahead on things.
I am checking out all the info you gave me . thank you
Posts: 229 | From Forty Fort, PA | Registered: Feb 2012
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