sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
First post here was whatever it says it was. I'm editing to add any information about SSDI I'm finding out about that might help someone else, and keeping it here in one place. Anyone else with lucky enough to be getting SSDI have any insights about how to do this?
------------ (Just heard I'm medically eligible for SSDI.)
Amazing. I didn't even do the process right- hadn't read BettyG's and Timaca's guidelines, because I hadn't even found Lymenet yet.
I didn't write much at all on the form, because my brain couldn't focus long enough to write sentences, and I didn't know how important it was to write more, not less. I never sent a DR's letter because I didn't know I could.
My husband and I are fortunate enough to have well connected friends, who just last week contacted one of our US Senators on our behalf.
But their calls didn't influence the process- the letter saying yes was dated before any of those calls were made.
I am convinced that the SPECT scan results from Columbia Presb. are what won the day. The SS powers that be can and do dispute Lyme blood work and clinical findings, but there is no arguing with a SPECT scan that clearly demonstrates brain damage.
Hope this info helps someone else somewhere along the way.
one hugely delighted dilly
[ 22. January 2007, 07:43 PM: Message edited by: sometimesdilly ]
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
Congratulations! That is such wonderful news.
Can you share what your diagnosis was? Was it lyme or something else? I've had a brain spect scan done which the hospital wrote it was indicative of chronic lyme disease!
I'm still working right now, full-time b/c I have to do so for insurance. I'm the primary wage earner for my family.
I'm pretty sure that would kick me out ....even though I work from home and have to rest several times a day. Do you have to be out of work for a long time before it's even considered?
I'm only 1/4 to 1/2 the employee I used to be. Won't be long before I can't work at all, I know it. My legs hardly work anymore and I forget half of what I hear from clients. My paperwork is the worst.....I just can't do it so I ignore it.
So, let's hear your story! Feel free to go indepth or pm me if you feel more comfortable doing this.
PS, is SSD state driven or federal? Do you have a copy of the form or know where I can get it?
Posts: 867 | From PA | Registered: Jan 2006
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bettyg
Unregistered
posted
DILLY, HAPPY DAYS ARE HERE AGAIN!! WHOOPIE!!
i'm so happy for you; 1st try; APPROVED; you know what a rarity that is, don't you?
check your banking acct. to see if the money is there too; many get that up to 2 wks. in advance prior to receiving the letter!
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posted
Congrats!! Tried to respond a while ago but it started a new post..... Posts: 13 | From USA | Registered: Oct 2006
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Great news*)*)!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
Thanks for the congrats and good wishes, Azure Wish and NorthStar and BettyG and LymeTutu and GRC and CaliforniaLyme and Tothe Poorhouse!!
And sorry for the long delay in replying. Literally one or two hours after I posted the news, my computer turned itself off and that was that.
Turns out its been sucking up and "suffocating" from furballs and fluff from my 4 very long-haired cats. The friend who came over to fix it today said that CPU's can literally go up in fire if they aren't kept clean. Who knew?
Anyway- oh yes, Betty, from reading lots here on the board, I do know how rare it is to get SS the first time around, and I feel incredibly fortunate.
We're lucky enough to have most of my oral meds covered by my husband's insurance, but overall my being disabled by lyme has caused us huge financial difficulties, and having a SS check come monthly will make an enormous difference. My husband looked 5 years younger after hearing the news. He's been waking up in the middle of the night worried sick about how we were going to make it, especially since we have already refinanced our house twice, can't again, and recovery looks to be years away.
As for your questions, ToThePoorHouse(maybe we can share bunkbeds when we get there..) My memory is at its worst, so forgive me if've forgotten to answer this or that piece.
SSDI is a federal program. You'll find lots of extremely good advice about how to apply for it here on the board. Look for both BettyG's and Timaca's info- in Newbie Links and there's lots more info there too.
As for my diagnosis. In terms of what the the Social Security folks used to decide that I was disabled, it probably helped that I had a bull's-eye rash and that my primary care DR definitively diagnosed me with Lyme in 2002.
So the SS folks could not doubt at all that I had Lyme had one point. Fast forwarding through months and years of my physical and cognitive disintegration and clueless DR's, I finally insisted on having a Lyme titer done in early 2006. Didn't know better, so had it done a Quest. My PCP reported it to me as negative, but by then I HAD begun my research, so demanded to see the results for myself.
Yep, even my Quest results were negative by CDC definition only. My PCP had wanted to believe I had MS(!). When that was ruled out and so were all the other exotic possibilities, and i began saying to her LYME LYME LYME she couldn't wait to hand me off.
That worked for me for a long while , actually, since she was happy to write whatever referrals and prescriptions my LLMD recommended (in addition to the abx).
I think I am going off track, sorry. My LLMD diagnosed me with late stage- primarily neurological Lyme in April 2006, after doing tons of testing (including, but not only Igenex), and a lumbar puncture (spinal tap) (never again!!)
I had both the SPECT and neuropysch testing done a month or so after that diagnosis. My LLMD wanted me to do both to have as much info as possible, both in terms of what damage was there and as well, whether or not I should start off with IV's.
I am SO glad I did both. I'm pretty convinced that having results from the SPECT, possibly coupled with the neuro-pysch testing which correlated with the brain damage shown by the SPECT, are why I was given SS disabilty the first time out.
The SPECT showed global (everywhere) moderate-severe swelling (encephalitis) and "white matter disease" which I believe means permanent damage to nerve endings.
The neuropysch testing demonstrated diminished memory, concentration, etc etc.. In most areas my ability had declined by more than 50% of what it was assumed I had begun with.
Why I think the SPECT carried more weight that the neuro testing is that while the neuro tests showed that signifcant across the board decline, based on the testers' estimates the starting point for my abilities was "superior," so the decline brought me to an "average" range in all but one category where I clearly flat-out flunked bigtime.
The great Dr. F who oversaw my neuro testing/did a lyme eval and interpreted my SPECT actually told me he thought I would be declined for SS for just that reason-- that they would see"average" and say, well, good, she's well enough to work).
Hope I answered your questions, Poorhouse...
And thanks again for the yays!
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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quote:Originally posted by sometimesdilly: TThe great Dr. F who oversaw my neuro testing/did a lyme eval and interpreted my SPECT actually told me he thought I would be declined for SS for just that reason-- that they would see"average" and say, well, good, she's well enough to work).
Is "the great dr. f., dr. f in rockville?
Posts: 5 | From washington dc | Registered: Dec 2006
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Hi dilly,
congratulations! thanks for the great information. I hope to get a SPECT scan this year. Would be great if we could get one before and after a year of treatment.
sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
hi Herxdoll-
no, Dr. F of Columbia in NYC. He's not a treating DR, but a leading researcher into the afects of TBD's.
hi and thanks Vermont Lymie!
I asked Dr. F about whether or not he recommended followup SPECTs at regular intervals during treatment. Given his studies, he is definitely the one to know.
I was surprised, but he said follow up scans were not as useful as follow-up neuro-pych testing, perhaps at 6 or 12 months out.
His reasoning was the same as what the leading DR said who actually did the scan- that the scan is a snapshot only, and actually, it does not reveal the "real time" situation of the brain. Could be that it is reflecting the state of the brain from months prior, or that it is not revealing recovery that has been taking place for the same length of time.
I don't understand how that could be.. I just know I won't be doing a SPECT anytime soon (or the neuropysch testing either, probably, as the testing costs a whole lot, likely isn't covered by insurance, and I pretty much get it from daily experience that my brain is still fried...
dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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Michelle M
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Member # 7200
posted
Please add my Yippee to the heap, Dilly. What a relief it must be for you and your hubby!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
I just woke up here on the West Coast.....so missed this earlier.
YAY! This is exciting news and all I can say is Congratulations. Some people never get this kind of wonderful news! Or unfortunately have to go thru so many hoops to get disability.
posted
Not to be nosey.......just curious. Is the amount enough to live on? Does it insure that you can get insurance or medicare for your meds?
I've always wondered.
Posts: 867 | From PA | Registered: Jan 2006
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bpeck
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Member # 3235
posted
Not being disrespectfull.. but what happens if you improve?
Barb
-------------------- Barb Peck (Elder LymeNet user). Lyme since 1975 Transfusion Posts: 1882 | From VT | Registered: Oct 2002
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
thanks, Michelle of the awesome house and Meg! My dear hubby and I are still floating on the good news.
Poorhouse- is the money enough to live on? all by itself? absolutely not. It does not even cover our mortgage, which is a low one; nor would it cover the cost of renting even a 2 bedroom apt here in this not very expensive city of Baltimore.
Adding- but the money will make the difference in being able to pay our bills every month and being able to afford to eat healthy food every day, which is all we need at the moment.
The SS money I'm getting is not needs-based, it is calculated on what I paid into SS over the approx. 30 years i was able to work (age 16- to 42). Getting this money does not affect our insurance situation, because we are covered by my husband's insurance through his workplace.
I think that receiving SSDI does affect those who have Medicare, but am not sure about that.
Barb- The SSDI benefits are granted for a set period- they get reviewed every 3 or more years. If I improve before then, I definitely want to work, fulltime if I am able. I LOVE working. I HATE not working.
The first day I get to work again I'm pretty sure they'll kick me off SSDI, but i will be too busy celebrating the return of my life to read the letter they send to tell me I'm no longer disabled.
That, at least, is how my dream goes....
hugs to everyone here for the support, which has made me feel even happier about this news- didn't think that was possible.
hugs- dilly
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bettyg
Unregistered
posted
quote:Originally posted by sometimesdilly:
I think that receiving SSDI does affect those who have Medicare, but am not sure about that.
Barb- The SSDI benefits are granted for a set period- they get reviewed every 3 or more years. If I improve before then, I definitely want to work, fulltime if I am able. I LOVE working. I HATE not working.
you get medicare after 2 yrs. from date THEY determine you are disabled! so for my 2nd claim, they went back 3 yrs; i had my 2 yr. wait in already; so it was MADE RETRO, and effective promptly.
if you go back to work, their is a work program that you can try it; if it doesn't work out; you do not lose SSDI benefits. that's all i know.
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AliG
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Member # 9734
posted
!!!YAY DILLY!!!
HOORAY FOR GOOD NEWS!
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
Ali!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
I've been so worried about you- you disappeared for even longer than I did here- well over a month. Calling you was first thing on my list of things to do tomorrow after I pack off my husband and son- and i'll do just that still. Will you be home in the morning???
many many hugs to yo0u, Ali- and thanks for the wahoo!!
love, dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
not sure how to edit name of topic-
have learned a little more about SSDI and wanted to post more info here as a FYI-
1. The SS people get to decide the exact day an applicant became disabled! -
In my case, they said became disabled on the very day my llmd first diagnosed me with late lyme. OK. So, they were to backdate payments to that month, which was April 2006.
But then, they assume that a disabled person must have enough assets to live on for 5 months. Ignoring the fully 3 years before that date I could not work, they extended out 5 months from their artificial date and took back the payments for those 5 months.
I know I'm not explaining this very well- I'm extremely addled right now. Hope that it makes sense.
The better news, which I was 100% unaware of, is that for disabled persons with dependent children, SS pays a monthly benefit to the child/children as well, at the same time, and it is typically a total of 50% of what they pay the disabled parent.
I'll be posting here whatever else I learn, in case it helps someone else the way.
dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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bettyg
Unregistered
posted
DILLY, here's how to edit topic line.
click PENCIL ICON which opens up entire post.
go to topic line and make whatever changes you have in topic. i also suggest you show a date after on this TOPIC LINE, 1-22-07; then you/others know when NEW important info was added.
yes, it was also my understanding the MEDICAL TEAM REVIEW decides the date we become disabled; not the DDS staff.
yes, kids will receive benefits. on my late sister, her oldest received benefits until age 18; daughter received until she turned 16 ONLY!
kids payments must be DOCUMENTED THOROUGHLY FOR ALL EXPENDITURES FOR THEM! don't just put it into sayings!
you need receipts, etc; so check with your tax preparer, etc!
my brother saved the money for his 2 kids; attorney told him later he was doing this wrong; so he told my sister when she got disability for her terminal breast cancer.
a separate checkbook is recommended for the kids' expenses! hope this sheds more light on this subject for YOU/OTHERS.
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sometimesdilly
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Member # 9982
posted
thanks, Betty. I edited the name.
and thanks for info on dependent benefits, but it sailed over my head-- completely brain fogged. It took a LONG while on the phone to understand anything at all about what was beign said about dependent's benefits.
Nothing was mentioned about having to account for money spent on my son. Are dependent benefits administered differently?
dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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posted
Amazing -- I've never heard of anyone getting SSDI on the first try -- usually two turn-downs, followed by an atty.
Guess you had enough evidence for them. Congratulations!
Posts: 13171 | From San Francisco | Registered: May 2006
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
Thanks Robin-
i remain convinced that the SPECT scan made the difference. so many others here seem to have had much more lyme-related medical history and evidence and yet didn't receive benefits first time.
Maybe success varies state by state too? MD (as a whole, at least on the Western Shore)is "liberal" in some basic ways. Maybe that makes a difference.
dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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bettyg
Unregistered
posted
dilly, read this link, it tells about benefits for your kids at home.
posted
Betty, If she is on SSID she will not get medicare after two years. I think you only get that if you are on regular SSD. Anyway I have been on SSI for long over two years and haven't got medicare yet. sick
Posts: 538 | From Iowa | Registered: Apr 2006
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bettyg
Unregistered
posted
quote:Originally posted by sick: Betty, If she is on SSID she will not get medicare after two years. I think you only get that if you are on regular SSD.
Anyway I have been on SSI for long over two years and haven't got medicare yet. sick [
dorothy, the SSI and SSDI are interchanged so much on usage.
SSI = Supplemental Security Income
ssdi = SOCIAL SECURITY "DISABILITY" INSURANCE benefits
ssdi, after being approved for this; after 2 yrs. you go on medicare.
i have no knowledge of SSI, but again, if you use the above link i showed; type in SSI + medicare in the search feature, and see what it brings up.
all this stuff is online; you just need to know where to look for it, and take the time to READ IT.
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