I am just wondering how many of you are on disability? I struggle with decision everyday. I keep saying I am going on it but than think about all I am going to lose. I don't really give a XCBP about what I am going to lose. I just think about what my family is going to lose and what they may have to endure. My situation is a little different because I have bi-racial children and the places where we would have to move are not accepting of that. Where we live now is so diverse but if I go on disability we will no longer be able to live here.
Sorry to get off the subject. Anyway, if you go on disability for Lyme do you have to prove positive test results or will the symptoms be enough? My LLMD has diagnosed with Lyme disease & babesia as well as many co-infections but only the co-infections came up positive with Igenex. The Lyme came up as indeterminate. In her mind (the LLMD's) there is no doubt I have Lyme. I just don't know what to do. Should I keep on and fight or go on disability. I feel so sick most days but I did have 2 good days for the first time since September last week.
Thanks! Hope
-------------------- HopeandMe Posts: 61 | From Maryland | Registered: Feb 2006
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Hope,
Only you can determine if you are able to work. For me, I had to quit for a time as the herxing was so bad. Then, after awhile, I recovered enough to return to work and I noticed I seemed to feel better when I got out around people. So I think my time off was really good for dealing with the worst of the herxing and then I seemed to be recovering best by being out and busy. My work is desk work so not to taxing on me physically.
I feel very sorry for all of you who have children. I know this has to be so hard on you.
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
It really is a decision you have to make for yourself.
I can share a bit of my story.
When this hit hard in late August i worked for about 2 weeks. After that I could not work, i was too dizzy to even stand. I went out on short term disability.
Went back to work from Dec-Feb....struggled. Treatment started in Dec which did not make things easy. Coworkers constantly asking how i was doing,.....WOW you lost a ton of weight...blah blah blah.
My company put me back out on disability because my LLMD said i could only work from home. The company said nope not allowed.
My main symptom involves my bladder and the multiple trips to the bathroom were wearing me out so much. Not to mention the long car ride to work and I still cannot drive.
For me, im so much better off here at home for now....ive noticed more better days. I can rest.
Hope do you have disability availabel thru your work?
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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bettyg
Unregistered
posted
Big welcome to the board. Breaking up for legibilit for us neuro lymies and double spacing needed in future. Thanks Hope.
quote:Originally posted by hopeandme:
Hi Gals & Guys-
I am just wondering how many of you are on disability? I struggle with decision everyday.
I keep saying I am going on it but than think about all I am going to lose. I don't really give a XCBP about what I am going to lose.
I just think about what my family is going to lose and what they may have to endure.
My situation is a little different because I have bi-racial children and the places where we would have to move are not accepting of that. Where we live now is so diverse but if I go on disability we will no longer be able to live here.
Sorry to get off the subject. Anyway, if you go on disability for Lyme, do you have to prove positive test results or will the symptoms be enough?
My LLMD has diagnosed with Lyme disease & babesia as well as many co-infections but only the co-infections came up positive with Igenex. The Lyme came up as indeterminate. In her mind (the LLMD's) there is no doubt I have Lyme.
I just don't know what to do. Should I keep on and fight or go on disability. I feel so sick most days but I did have 2 good days for the first time since September last week.
Thanks!Hope
You asked the right question to me; boy, do I have experience on that. Took 5 hellish years, but I won 7-1-05 on my 2nd SSDI app.
I'll copy paste into here on DISINISSUES, disability insurance issues area, below PLUS my personal experience & suggestions had I known any different at the beginning. Here you go. ------------------------------------------
IF YOU ARE TRYING TO GET SS DISABILITY INSURANCE BENEFITS
Hi! I know what you mean about memory & typing, etc....it's the pits!
I do suggest you join the FREE DISINISSUES and read thoroughly or just print it all off of the FEMALE MD with chronic fatigue, etc. she gives wonderful, detailed examples that DDS, disability reps, want to approve/deny you.
Also have you looked thru the ADULT APPROVED LIST OF IMPAIRMENTS? That's critical also!
note 1.04; look at the rest of the 14 other specific areas too....
I printed off 1-14 sections showing what brief guidelines were for each section. I used that against ALL my medical reocrds, 3" thick!! Then I went to their DETAILED specifics for the sections that applied to my illnesses!
TIMECONSUMING....TOOK ALL 7 WEEKS from my notice of my ALJ hearing date!
So you have NOT submitted your INITIAL APP TO SS OFFICE, correct? Good, you want this to be as complete as possible so they can NOT turn you down on the 1st step as they do us all!!
\============================================= What I did with an online friend was this: prepared a chart noting the specific section of 1 - 14 that my diagnosed illnesses showed the wording, dr. seen & date.
Example, 14.09 LYME disease is mentioned in but doesn't give any examples. So I showed 14.09 with my drs. name & date plus specific details about each visit where lyme symptoms were stated..
I hope you have a copy of ALL MEDICAL REPORTS...drs., xrays, all blood labs.
It's critical that you KEEP A COPY FOR YOURSELF! ==========================================
On mine, I showed the date mailed to ALJ & LAWYER PLUS I kept a copy. Then I went to copy center nearby & copied and mailed promptly to lawyer per his request.
WHY THIS IS IMPORTANT: if you have an ALJ hearing, request thru your local SS office to REVIEW your complete SSDI app at THEIR local office! When you see things you submitted with your writing on, don't look at them!
Look & read only the secretative RFC & MFC done by the the in-staff DDS DRS/PSYCHOOGISTS! You want to make copies of ALL the stuff they have & other stuff you don't have so you can use that info against them!
ACTIVITY DAILY LOG, ADL link is: http://f4.grp.yahoofs.com/v1/oHfvQzZLYvcfvmUv V4L_ayW4_l5PFECbH9UA2BR_YfE66JZ0ZSxttbcO7NZqu HpjUfnUxG9wWuH7WPXAzrR7YqCnrsO80V5hSxJwduQ/ Activities%20of%20Daily%20Living%20questionnaire
At moment, can NOT find MFC questionnaire, but look at site on links/files. It is there but not visible to my eyes presently.
=======================================
NOTE: I'D DO THIS DIFFERENTLY NOW! SEND 1 COPY TO ALJ and 1 to your lawyer!
Lawyer did NOT SEND MY REPORTS TO DDS STAFF PROMPTLY; they didn't see many things when they denied me although I had good medical info!
Examples, 2 RFC, residual function capacity done by PCP dr. of 26 yrs. & rheumatologist;
plus 2 MFC, mental function capacity, done by psychiatrist & psychologist.... the 1st person was the one judge used in APPROVING my 2nd claim for severe depression/effective disorder & anxiety.
ALJ's don't like working with LYME, FIBRO, CHRONIC FATIGUE. MENTAL is on approved list of adult approved impairment list! So don't fight it, go with it!
================================================== IF YOU ARE TRYING TO GET SS DISABILITY INSURANCE BENEFITS ================================================= This message is sent upon subscription, and again monthly. Please let the moderators know if any of the links have changed.
There are many more links, as well as advice, in the "useful" messages in the Files area of the website. Go to http://groups.yahoo.com/group/Disinissues and click on Files.
BETTY NOTE: Look at the female MD's DETAILED BACKGROUND right below this paragraph. Print off her detailed responses as to why she could NOT do her job, and then apply that to YOUR own job as to why you no longer can do any type of sustainable work now nor in the foreseeable future!
These links are a compilation of several areas of interest which are commonly requested and mentioned. They reflect the collected wisdom of this group. Check them out - you just might find the information you were looking for! Take a look at Files that are not specific to your situation, because they might be helpful anyway - what works for Social Security may work for LTD claims, what applies to CFS may apply to your medical condition.
The Welcome Message and Group Guidelines are also in Files, if you need a refresher on how this group works.
You must register with Yahoo to use the website, but note: Be careful not to permit your address to be put into the directory when you register. Put as little as possible into your public profile. You do not need a Yahoo address to use the website. Your email address is what Yahoo calls your "alternate address." Contact the moderators at [email protected] or for AOL subscribers: Click here -----------------------------------------~--> Disinissues website - http://groups.yahoo.com/group/Disinissues
DO NOT FORWARD ANY MESSAGE FROM Disinissues WITHOUT PRIOR WRITTEN PERMISSION FROM THE AUTHOR Do not distribute any member's email address.
NO MESSAGE ON THIS LIST IS TO BE CONSTRUED AS LEGAL ADVICE --------------------------------------------~-> Yahoo! Groups Links To visit your group on the web, go to: http://groups.yahoo.com/group/Disinissues/ To unsubscribe from this group, send an email to: [email protected] Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.
An online friend of mine from disinissues web site posted this info today, so I have copied it over here.
Subject: fibro/CFS disability info [Disinissues] what does an Functional Capacity Exam entail?
Lyme, fibro, & CFS support group members who are/will be filing for SS Disability insurance benefits, please go to the web page shown below.
There were 9 pages of info I printed below area where you can order from fibro network a 70 page packet. I too plan on including this info when I send my FINAL packet of info to chief alj before my June 16, 05 hearing...my last chance! =======================================
Please read the site mentioned on: WHY DISABILITY TESTING FOR FMS IS OFTEN MISLEADING ADVICE FOR FM/CFS PATIENTS AND THEIR DISABILITY TEAM.....
Also after this article are the following articles:
WHAT COULD BE CAUSING DELAYED-PHASE FLARES?
BENNETT'S METHOD FOR ASSESSING FUNCTION IN FMS..
TECTONIC CHANGES IN DISABILITY LAW by lawyer Joshua Potter, CALIF.
MEDICALLY DETERMINABLE IMPAIRMENT REQUIREMENTS FOR CFS & FMS
DOCUMENTIONATION...VIEW IT AS AN INSURANCE POLICY
I printed this out in larger print for my eyes....9 pages! Will read it thoroughly
and mark up 2nd copy to go to ALJudge for my 2nd hearing as medical evidence also.
Now you are overwhelmed w/info but concentrate on the female MDs detailed info she furnished to local SS office who approved 1st time, 1ST STEP! good luck & read galore!
Don't procrastinate on this; you can lose money!
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posted
Hi Hope I've been on SSD since 1997. Yes, in order to qualify for SSD you must have a diffinative diagnosis and the medical records to back it up.
I like you had put off applying for it for almost 3 years because I was "always going to get well enough to go to back to work" unfortunately for me that didn't happen. It was a long battle I think mostly because I was only in my 20's at the time when I originally applied (SSD doesn't like giving permanenet dis to someone so young) and I also didnt have a lawyer the first time around.
klutzo
Frequent Contributor (1K+ posts)
Member # 5701
posted
I have been on SSD since 1986. I was one of the first people in the U.S. to win a disability case for Fibromyalgia. That was the first year anyone with FMS ever won disability, and only 17 of us in the whole country got it.
Of course, it was really Lyme, but I did not find that out until 2 1/2 yrs. ago.
I had no choice. Every time I tried to work, I collapsed on the floor of my office and had to be taken off to the hospital. I could not walk without help, as my limbs kept going numb on me.
The 3rd, and last, time I tried to go back to work, I was unable to stand up and get out of the car when I got home, and had to fall out onto the grass and crawl. Then I could not pull myself up high enough to get the key in the door and had to lay there forever until I got enough energy back.
I would apply NOW, if I were you. You can always cancel, but it takes over a year to win SSD in most cases. There is a huge backlog.
Also, there is a time limitation problem, unless they changed the rules since back when I got it. They look at your last few years of employment in determining your monthly money, so the longer you are out of work before applying, the less you may get. You don't want to end up on SSI instead of SSD, since it is far less than half the amount per month of SSD in most cases.
Klutzo
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
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hopeful123
Frequent Contributor (1K+ posts)
Member # 3244
posted
hey hopeandme,
i went on dissability (not for lyme) almost seven years ago. a year later i qualified for medicare health insurance (it takes one year from when dissability is awarded) and then three months after that i had an opportunity to try to work again at a place where i had worked several years back.
i wasn't sure i could do it, but disability gives you a couple of months to try out working witnout going off your dissability (as long as it's within a certain dollar amt. that you're not making too much). i found that i could work, so i notified them that i could. i am working disabled. i need medicare to be able to work because it pays for certain necessary tx.
i know this sounds confusing, but it is fairly simple. once you are approved, and a year goes by, you can give up your dissability check, but keep the medicare if you go back to work.
i know it's a very hard decision to make. no one wants to grow up and go on disability. but, it doesn't mean you can't get well and be able to go off of it. i doesn't mean that you are a different person where it really counts (inside).
good luck.
gotta go.
-------------------- some days you're the bug, some days you're the windshield Posts: 1160 | From NY | Registered: Oct 2002
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EtherealGirl
Unregistered
posted
I applied for disability after being out of work for six months. It took me that long to admit I can't work any longer.
I would not recommend this, because it takes so long to get on disability. I've still not been approved, and I'm living on child support.
I would suggest that you apply anyway, even if you're not sure. Most people are denied the first time, and it really does take a very long time to get it awarded.
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posted
I've been on SSD since 1988. I waited several years before applying because I kept thinking I would get better.
Kathy
-------------------- You never know how strong you are until being strong is the only choice you have. Posts: 807 | From South Dakota | Registered: Jul 2005
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posted
Thanks for all of the informative information. I am crying because I am so scared. At least I have your wisdom to lean on.
Thanks again! Hope
-------------------- HopeandMe Posts: 61 | From Maryland | Registered: Feb 2006
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Hey, Hope!
I have been sick for a long time but didn't get dx until this past summer. I started treatment in June, and, as I'd heard, I got much sicker before I started seeing improvements.
I've continued to work through this illness, and I'm really glad I made that decision.
That said, I should also explain that I'm self-employed, so I have some flexibility. I also cut back on my workload by about a third.
I have to drive a lot to do what I'm doing, and for a month at the beginning of treatment, that was difficult. Since then, I've just had to pace myself.
Working takes me out of myself and gets me out of the house. Now that I'm starting to feel better, I've increasing my workload. For me, it was important to try doing this.
There are others on this board who've done the same thing (I can think of four off-hand).
Mostly, I think it's got to be a completely individual decision.
Andie
Posts: 2549 | From never never land | Registered: May 2005
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phil444
Unregistered
posted
I became extremely ill at the end of 1987. I was determined to to get well and be able to get back to work.
By 1993, after many many many doctors, diets and experimental alternative therapies, I was no better.
A friend of mine convinced me that even if I got on government help, if I got better, I could always get off it. So I applied.
They have a code No. For chronic fatigue syndrome. So I made that my number one problem. I also included chemical sensitivity and lyme disease.(They always refuse you the first time). So don't get discouraged!
It took two years from the time I applied until I receive my disability. This is usually how long it takes. The good news is, if you do win your case, you get back pay , from the time you applied. Two years from me, a nice lump sum!
I went on short term, part-time disability while continuing to work part-time in May 2004 when I was first diagnosed with Fibromyalgia. I planned on recovering and going back to work.
Instead, I got sicker and sicker until Jan 2005 when I just couldn't work any more. Been on full-time, private disability since then. The private company denied my full-time disability at first, but I got accepted on appeal because I had a great lawyer.
The private disability insurance company required me to apply for SSDI, which I received without having to appeal, probably because I reused all the paperwork I'd gathered for the private insurance appeal.
My advice: Consult with a really good lawyer as soon as possible. They can help you learn how to make sure your doctors are recording the right information that will help you avoid denials. If I had seen my lawyer well before applying for ST or LT disability, I probably would have not been denied the first time.
My next concern is having to navigate my private disability insurance company's occasional investigation into my health now that I have Lyme as an additional diagnosis to FMS. THAT should be interesting.
Has anyone else had to change or add Lyme to a diagnosis after already getting on disability?
Elizabeth
PS: One thing I regret is that I continued to work part-time when I was getting more sick in 2004. I can see now that I only made myself sicker and caused myself a lot of needless suffering.
luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
many people are using low dose minocycline for rheumatoid arthritis.
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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posted
I'm on Social Security Disability, with a Lyme diagnosis. It is hard to do, but I finally had no choice.
If going on disability makes you worse off financially, which it sounds like it would or else why would you have to move ? Your right, you should think long and hard about it. Moving is very stressful, living in a bad place is stresfull, and stress is bad for Lyme. Stressed kids are bad for Lyme parents too.
In my case, I was going broke without it, I was holding down a 6 hr one day a week part time job that left me unable to do anything else all week. And, I only did this seasonally.
If I hadnt gotten the disability, we would have had to sell the house for sure, I was awfull close to having to, juggling 2nd loans and charge cards. I am a divorced mom with 3 kids, no other wage earners in the house. It was pretty embarassing going to the local food bank for food, also.
Its not easy to qualify for social security. Are you talking about going on short term disability from your work ? We have more more, less stress, and less kid embarassment now that Im on disability, but sounds like that might not be the case for you ?
Posts: 222 | From Santa Cruz Mountains, CA USA | Registered: Nov 2004
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Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
IMA said:
quote:
If you feel you cannot work because you are too ill and your physician agrees, you should apply for disability. The money you may be eligible for could be beneficial in your treatment and could mean the difference in you getting well or not. If you are able to work but choose not to, do not apply for disability.
quote:
Disability is not a choice. It is what happens when you have no choice. For me, there was no decision-making aspect about it. I would kill to be a productive citizen again.
It took me 5 years to get SSD. I lived on retirement money I had. I didn't find I had Lyme until 2 months ago, so don't know how that might affect my periodic SSD reviews.
Tracy
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
IMA, I meant to put in my post that I quoted you because I totally agreed with what you said. Sorry for any confusion - my fault.
Tracy
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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posted
Hi- I went on SSDI about 6 years ago. I still work part time and get all of my benefits. You are able to make $12,000 a year and still get full benefits. I find that I feel worse on weekends when I let my body rest and feel better when I am at work.
My biggest mistake was that I should have gone on disability when I was still married. Unforunately I chose to get divorced 8 years ago and since when i applied I was no longer married, my benefits were not great. I had not worked while raising my kids, my husband made the money. You don't get rewarded for that!
So, I only had 5 years of working and paying into social security before going on disability. Oooops!
Posts: 85 | From Eugene | Registered: Jun 2005
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