Social Security

[Guest guest]

FOR US THEY SAY WE MAKE AND HAVE TO MUCH MONEY. WE HAD DECENT CARS BEFORE MY

ACCIDENT, BUT B/T RENT AND EVERYTHING ELSE ITS NOT SO MUCH.

" Delores F. " <tequilarose413@...> wrote:

Good Morning...

I don't know where you live...but in NY State...they are eligible..

{but they do go by Household Income}

When the Children turn 18 then THAT doesn't apply any more.

" When Life Gives Ya Lemons...Make lemonade "

and if a friend has Vodka...

Have a Party!

From: jacoxharmony <jacoxharmony@...>

Subject: [ ] Social Security

Date: Thursday, April 23, 2009, 3:11 PM

I was told not to even try to sign up for SSI because children with epilepsy

are denied the benefits so my son has chronic tonic seizures and the side

effects are ten times worse then the condition so I needs to figure out what

options I have since he can't stay still in school with trying to provent the

doctors from diagnosing him with ADHD so any input? Please and thank you!

[Guest guest]

FW: Social Security

Rena

LET US SHOW OUR LEADERS IN WASHINGTON "PEOPLE POWER" AND THE POWER OF THE INTERNET. PLEASE FORWARD TO ALL OF YOUR FRIENDS.

IT DOESN'T MATTER IF YOU ARE REPUBLICAN OR DEMOCRAT !=2 0KEEP IT GOING!!!! Propose this in 2009: START A BILL TO PLACE ALL POLITICIANS ON SOCIAL SECURITY ----------------- ----------------- SOCIAL SECURITY: (This is worth reading. It is short and to the point.) Perhaps we are asking the wrong questions during election years. < B>Our Senators and Congresswomen do not pay into Social Security and, of course, they do not collect from it. You see, Social Security benefits were not suitable for persons of their rare elevation in society. They felt they should have a special plan for themselves. So, many years ago they voted in their own benefit plan. In more recent years, no congressperson has felt the need to change it. After all, it is a great plan. For all practical purposes their plan works like this: When they retire, they continue to draw the same pay until they die. Except it may increase from time to time for cost of living adjustments... For example, Senator Byrd and Congressman White and their wives may expect to draw $7, 800,000.00 (that's Seven Million, Eight-Hundred Thousand Dollars), with their wives drawing $275, 000..00 during the last years of their lives. This is calculated on an average life span for each of those two Dignitaries. Younger Dignitaries who retire at an early age, will receive much more during the rest of their lives. Their cost for this excellent plan is $0.00. NADA!!! ZILCH!!! This little perk they voted for themselves is free to them. You and I pick up the tab for this plan. The funds for this fine retirement plan come directly from the General Funds; "OUR TAX DOLLARS AT WORK"! From our own Social Security Plan, which you and I pay (or have paid) into, every payday until we retire (which amount is matched by our employer), We can expect to get an average of $1,000 per month after retirement. Or, in other words, we would have to collect our average of $1,000 monthly benefits for 68 years and one (1) month to equal Senator Bill Bradley's benefits! Social Security could be very good if only one small change were made. That change would be to Jerk the Golden Fleece Retirement Plan from under the Senators and Congressmen.. Put them into the Social Security plan with the rest of us Then sit back..... And see how fast they would fix it! If enough people receive this, maybe a seed of awareness will be planted and maybe good changes will evolve. How many people can YOU send this to?Better yet...... How many people WILL you send this to?

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[Guest guest]

Wow, a very messed-up system. Thanks for sharing.From: gayle <glass3311@...>Subject: Fw: Social Security Date: Tuesday, August 18, 2009, 2:28 AM

[Guest guest]

messed up thanks to our greedy and wasteful government. theyre also trying now to get control of everything, - health care at the forefront.

gg

Fw: Social Security Date: Tuesday, August 18, 2009, 2:28 AM

[Guest guest]

Here's a perspective from a doctor on how a government health care plan will work with patients:http://www.americanthinker.com/2009/08/obamacare_and_me.html August 06, 2009

ObamaCare and me

By Zane F Pollard, MDI have been sitting

quietly on the sidelines watching all of this national debate on

healthcare. It is time for me to bring some clarity to the table by

explaining many of the problems from the perspective of a doctor.First

off, the government has involved very few of us physicians in the

healthcare debate. While the American Medical Association has come out

in favor of the plan, it is vital to remember that the AMA only

represents 17% of the American physician workforce.I

have taken care of Medicaid patients for 35 years while representing

the only pediatric ophthalmology group left in Atlanta, Georgia that

accepts Medicaid. For example, in the past 6 months I have cared for

three young children on Medicaid who had corneal ulcers. This is a

potentially blinding situation because if the cornea perforates from

the infection, almost surely blindness will occur. In all three cases

the antibiotic needed for the eradication of the infection was not on

the approved Medicaid list. Each time I was told to fax

Medicaid for the approval forms, which I did. Within 48 hours the form

came back to me which was sent in immediately via fax, and I was told

that I would have my answer in 10 days. Of course by then each child

would have been blind in the eye. Each

time the request came back denied. All three times I personally

provided the antibiotic for each patient which was not on the Medicaid

approved list. Get the point -- rationing of care.Over

the past 35 years I have cared for over 1000 children born with

congenital cataracts. In older children and in adults the vision is

rehabilitated with an intraocular lens. In newborns we use contact

lenses which are very expensive. It takes Medicaid over one year to

approve a contact lens post cataract surgery. By that time a

successful anatomical operation is wasted as the child will be close to

blind from a lack of focusing for so long a period of time. Again, extreme rationing. Solution: I have a foundation here in Atlanta supported 100% by private funds

which supplies all of these contact lenses for my Medicaid and illegal

immigrants children for free. Again, waiting for the government would

be disastrous.Last

week I had a lady bring her child to me. They are Americans but live

in Sweden, as the father has a job with a big corporation. The child

had the onset of double vision 3 months ago and has been unable to

function normally because of this. They are people of means but are

waiting 8 months to see the ophthalmologist in Sweden. Then if the

child needed surgery they would be put on a 6 month waiting list. She

called me and I saw her that day. It turned out that the child had

accommodative esotropia (crossing of the eyes treated with glasses

that correct for farsightedness) and responded to glasses within 4

days, so no surgery was needed. Again, rationing of care.Last

month I operated on a 70 year old lady with double vision present for

3 years. She responded quite nicely to her surgery and now is symptom

free. I also operated on a 69 year old judge with vertical double

vision. His surgery went very well and now he is happy as a lark. I

have been told -- but of course there is no healthcare bill that has

been passed yet -- that these 2 people because of their age would

have been denied surgery and just told to wear a patch over one eye

to alleviate the symptoms of double vision. Obviously cheaper than

surgery. I

spent two year in the US Navy during the Viet Nam war and was well

treated by the military. There was tremendous rationing of care and we

were told specifically what things the military personnel and their

dependents could have and which things they could not have. While I was

in Viet Nam, my wife got sick and got essentially no care at the

Naval Hospital in Oakland, California. She went home and went to her

family's private internist in Beverly Hills. While it was expensive,

she received an immediate work up. Again rationing of care.For

those of you who are over 65, this bill in its present form might be

lethal for you. People in England over 59 cannot receive stents for

their coronary arteries. The government wants to mimic the British

plan. For those of you younger, it will still mean restriction of the

care that you and your children receive.While

99% of physicians went into medicine because of the love of medicine

and the challenge of helping our fellow man, economics are still

important. My rent goes up 2% each year and the salaries of my

employees go up 2% each year. Twenty years ago, ophthalmologists were

paid $1800 for a cataract surgery and today $500. This is a 73%

decrease in our fees. I do not know of many jobs in America that have

seen this sort of lowering of fees.But

there is more to the story than just the lower fees. When I came to

Atlanta, there was a well known ophthalmologist that charged $2500 for

a cataract surgery as he felt the was the best. He had a terrific

reputation and in fact I had my mother's bilateral cataracts operated

on by him with a wonderful result. She is now 94 and has 20/20 vision

in both eyes. People would pay his $2500 fee. However,

then the government came in and said that any doctor that does

Medicare work cannot accept more than the going rate ( now $500) or

he or she would be severely fined. This put an end to his charging

$2500. The government said it was illegal to accept more than the

government-allowed rate. What I am driving at is that those of you

well off will not be able to go to the head of the line under this

new healthcare plan, just because you have money, as no physician will be willing to go against the law to treat you.I

am a pediatric ophthalmologist and trained for 10 years post-college

to become a pediatric ophthalmologist (add two years of my service in

the Navy and that comes to 12 years).A neurosurgeon spends 14 years

post -college, and if he or she has to do the military that would be

16 years. I am not entitled to make what a neurosurgeon makes, but the

new plan calls for all physicians to make the same amount of payment. I

assure you that medical students will not go into neurosurgery and we

will have a tremendous shortage of neurosurgeons. Already, the top

neurosurgeon at my hospital who is in good health and only 52 years old

has just quit because he can't stand working with the government

anymore. Forty-nine percent of children under the age of 16 in the

state of Georgia are on Medicaid, so he felt he just could not stand

working with the bureaucracy anymore.We

are being lied to about the uninsured. They are getting care. I

operate at least 2 illegal immigrants each month who pay me nothing,

and the children's hospital at which I operate charges them nothing

also.This is true not only on Atlanta, but of every community in

America.The

bottom line is that I urge all of you to contact your congresswomen and

congressmen and senators to defeat this bill. I promise you that you

will not like rationing of your own health.Furthermore,

how can you trust a physician that works under these conditions knowing

that he is controlled by the state. I certainly could not trust any

doctor that would work under these draconian conditions.One

last thing: with this new healthcare plan there will be a tremendous

shortage of physicians. It has been estimated that approximately 5% of

the current physician work force will quit under this new system.

Also it is estimated that another 5% shortage will occur because of the

decreased number of men and women wanting to go into medicine. At the

present time the US government has mandated gender equity in

admissions to medical schools .That means that for the past 15 years

that somewhere between 49 and 51% of each entering class are

females. This is true of private schools also, because all private

schools receive federal funding. The

average career of a woman in medicine now is only 8-10 years and the

average work week for a female in medicine is only 3-4 days. I have now

trained 35 fellows in pediatric ophthalmology. Hands down the best

was a female that I trained 4 years ago -- she was head and heels

above all others I have trained. She now practices only 3 days a

week.Background: Dr. Zane F. PollardI did my undergraduate work at Northwestern University

in ton, Illinois. I graduated Tulane University medical School

Alpha Omega Alpha ( medical school's top 10% of graduating class).

Internship at the Univ. of Southern California in Los Angeles, one year

of General surgery residency at the U. of California in San Francisco.

Two years in the US Navy. Residency in Ophthalmology at the U.of S.

California in Los Angeles, fellowship in pediatric Ophthalmology at the

Wills Eye Hospital in Philadelphia. In practice with Eye Consultants of

Atlanta for the past 35 years. Published 90 papers in peer reviewed

Scientific Ophthalmology Journals. Member of the American Association

for Pediatric Ophthalmology and Strabismus, American Academy of

Ophthalmology and the American Ophthalmological Society. Board

certified in Ophthalmology.

Re: Fw: Social Security

messed up thanks to our greedy and wasteful

government. theyre also trying now to get control of everything, -

health care at the forefront.

gg

Fw: Social Security Date: Tuesday, August 18, 2009, 2:28 AM

[Guest guest]

I don't personally know anyone who's gotten a SS approval on Lyme

(though there are rumors it's happened). But it may be useful to know

that even in the CFS community -- where there is a much stronger legal

mandate for Social Security to accept them -- people routinely avoid

mentioning CFS at all, and instead try to get themselves approved on

the basis of the one or two symptoms that are most obviously disabling

them.

An SS adjudicator may think Lyme is overblown and CFS doesn't exist.

But when presented with someone who has been clearly diagnosed, say,

with significant cognitive dysfunction, or crippling arthritis, or

chronic asthma -- things they encounter pretty normally, in general --

they have a lot harder time arguing about it. This strategy doesn't

give them room to dispute the cause; instead, they're left to simply

assess how disabiling the effects are. That's a much easier battle for

you to win.

Knowing this, some Lyme and CFS people carefully document their

disabling arthritis or neuropathy or autoimmune issues -- something

it's comparatively easy to get a doctor to do -- and simply present

that as their chief reason for applying. Using the L-word or the C-

word or whatever suggests right out of the gate that you're a

malingerer. Leaving it out of the conversation entirely deprives them

of the chance to go there, and focuses them back on your actual issues.

Sara

On Oct 18, 2009, at 9:45 PM, bellapazza68 wrote:

> Hi all, I haven't been on in a while. My brain hasn't been with me.

> I have just had my first denial for social security and have secured

> an attorney to help with the process. I'm not too stressed about it

> at this point, but I have a few questions if I may ask of you all.

> Has anyone had much success in getting through the social security

> process with a Lyme diagnosis?

>

> Next question, though I am not physically able to handle a job right

> now and mentally I cannot do what I used to do because a lot of my

> memory is gone and I can't seem to remember new stuff without tons

> of effort, I really want to work. Besides, financially my husband

> and I are beyond the breaking point, and he just took another pay

> cut. Question is, is there any taboo with taking a few classes

> (while I am in the social security black hole) to see if I could

> maybe brush up on a few skills so that when I am physically ready to

> go back to work, mentally I might be ready to do something as well?

> Or if there is nothing wrong with taking classes, and I can do those

> either on a schedule of my choosing or online, and I am having

> success at it at some point, maybe even work toward my degree?

>

> I am really confused about what to do because, as I said, I want to

> work but I cannot think of what I could do right now that anyone

> would possibly pay me to do on a very sporadic basis with a mind and

> a body that won't cooperate. Once upon a time I had big plans for my

> life.

>

> Thank you for your input.

> Jenni

>

>

>

> ------------------------------------

>

> For free up to date information about Lyme disease and the known

> co-infections delivered to your email address see:

> Robynns_Lyme_List/

>

[Guest guest]

[ ] Social Security

Hi all, I haven't been on in a while. My brain hasn't been with me. I have

just had my first denial for social security and have secured an attorney to

help with the process. I'm not too stressed about it at this point, but I have a

few questions if I may ask of you all. Has anyone had much success in getting

through the social security process with a Lyme diagnosis?

Next question, though I am not physically able to handle a job right now and

mentally I cannot do what I used to do because a lot of my memory is gone and I

can't seem to remember new stuff without tons of effort, I really want to work.

Besides, financially my husband and I are beyond the breaking point, and he just

took another pay cut. Question is, is there any taboo with taking a few classes

(while I am in the social security black hole) to see if I could maybe brush up

on a few skills so that when I am physically ready to go back to work, mentally

I might be ready to do something as well? Or if there is nothing wrong with

taking classes, and I can do those either on a schedule of my choosing or

online, and I am having success at it at some point, maybe even work toward my

degree?

I am really confused about what to do because, as I said, I want to work but I

cannot think of what I could do right now that anyone would possibly pay me to

do on a very sporadic basis with a mind and a body that won't cooperate. Once

upon a time I had big plans for my life.

Thank you for your input.

Jenni

__________ Information from ESET NOD32 Antivirus, version of virus signature

database 4523 (20091019) __________

The message was checked by ESET NOD32 Antivirus.

http://www.eset.com

__________ Information from ESET NOD32 Antivirus, version of virus signature

database 4524 (20091019) __________

The message was checked by ESET NOD32 Antivirus.

http://www.eset.com

[Guest guest]

Hi,

I never heard of one person who's gotten approval on lyme. I am where Jenni

is also. I have been out of work for a yr and never filed. I really did figure

I would be healthier by now and able to work, I to had big plans. Well, I filed

a couple of weeks ago for SS, which mentally brought me so down. I mentioned to

the attorney, who I got to handle all the paperwork to file for me, as I didn't

have the cognitive function needed to do so, to forget about trying to get it on

lyme and Co. He doesn't understand what goes on, and looked at me like I was

crazy. So I guess we will see, but I do have a lot of issues going on that they

can maybe use. So I also agree with using the issue's that are understood and

" seen " . Unfortunately that is where society is at these days. And its such a

shame. I am choosing not to do any classes that can maybe later be thrown in my

face. I am not taking that chance. Lyme ilitlerates don't understand that there

are

times that some of us can function and possibly the next minute you can't. I

wish you luck and better health....

________________________________

From: Sara <srobinson@...>

Sent: Mon, October 19, 2009 3:41:39 PM

Subject: Re: [ ] Social Security

I don't personally know anyone who's gotten a SS approval on Lyme

(though there are rumors it's happened). But it may be useful to know

that even in the CFS community -- where there is a much stronger legal

mandate for Social Security to accept them -- people routinely avoid

mentioning CFS at all, and instead try to get themselves approved on

the basis of the one or two symptoms that are most obviously disabling

them.

An SS adjudicator may think Lyme is overblown and CFS doesn't exist.

But when presented with someone who has been clearly diagnosed, say,

with significant cognitive dysfunction, or crippling arthritis, or

chronic asthma -- things they encounter pretty normally, in general --

they have a lot harder time arguing about it. This strategy doesn't

give them room to dispute the cause; instead, they're left to simply

assess how disabiling the effects are. That's a much easier battle for

you to win.

Knowing this, some Lyme and CFS people carefully document their

disabling arthritis or neuropathy or autoimmune issues -- something

it's comparatively easy to get a doctor to do -- and simply present

that as their chief reason for applying. Using the L-word or the C-

word or whatever suggests right out of the gate that you're a

malingerer. Leaving it out of the conversation entirely deprives them

of the chance to go there, and focuses them back on your actual issues.

Sara

On Oct 18, 2009, at 9:45 PM, bellapazza68 wrote:

> Hi all, I haven't been on in a while. My brain hasn't been with me.

> I have just had my first denial for social security and have secured

> an attorney to help with the process. I'm not too stressed about it

> at this point, but I have a few questions if I may ask of you all.

> Has anyone had much success in getting through the social security

> process with a Lyme diagnosis?

>

> Next question, though I am not physically able to handle a job right

> now and mentally I cannot do what I used to do because a lot of my

> memory is gone and I can't seem to remember new stuff without tons

> of effort, I really want to work. Besides, financially my husband

> and I are beyond the breaking point, and he just took another pay

> cut. Question is, is there any taboo with taking a few classes

> (while I am in the social security black hole) to see if I could

> maybe brush up on a few skills so that when I am physically ready to

> go back to work, mentally I might be ready to do something as well?

> Or if there is nothing wrong with taking classes, and I can do those

> either on a schedule of my choosing or online, and I am having

> success at it at some point, maybe even work toward my degree?

>

> I am really confused about what to do because, as I said, I want to

> work but I cannot think of what I could do right now that anyone

> would possibly pay me to do on a very sporadic basis with a mind and

> a body that won't cooperate. Once upon a time I had big plans for my

> life.

>

> Thank you for your input.

> Jenni

>

>

>

> ------------ --------- --------- ------

>

> For free up to date information about Lyme disease and the known

> co-infections delivered to your email address see:

> http://health. groups.. com/group/ Robynns_Lyme_ List/

>

[Guest guest]

One other thing you can have the lawyers use, is chronic sleep apnea, which

creates such tremendous fatigue, one can't work, function, etc. Many of us have

it and don't even know it. I went for a sleep study last year and was

shocked... they told me I had woke up on the average of once a minute or more

all night... and had daytime narcolepsy, as well!

Also, some of the gut disturbances, IBS, etc, might help you qualify.

Good luck, Cindi

Cindi Callanan, MsT, CST, BEC

Re: [ ] Social Security

Hi,

I never heard of one person who's gotten approval on lyme. I am where Jenni is

also. I have been out of work for a yr and never filed. I really did figure I

would be healthier by now and able to work, I to had big plans. Well, I filed a

couple of weeks ago for SS, which mentally brought me so down. I mentioned to

the attorney, who I got to handle all the paperwork to file for me, as I didn't

have the cognitive function needed to do so, to forget about trying to get it on

lyme and Co. He doesn't understand what goes on, and looked at me like I was

crazy. So I guess we will see, but I do have a lot of issues going on that they

can maybe use. So I also agree with using the issue's that are understood and

" seen " . Unfortunately that is where society is at these days. And its such a

shame. I am choosing not to do any classes that can maybe later be thrown in my

face. I am not taking that chance. Lyme ilitlerates don't understand that there

are

times that some of us can function and possibly the next minute you can't. I

wish you luck and better health....

[Guest guest]

Hi Jenni, I am new here, and newly diagnosed, but I feel your pain when it comes

to not being able to work. It is/was one of the hardest things for me. I have

been ill most of my life (I am 38). I have always been able to somehow get

through it up until 3.5 years ago when the fatigue and FM symptoms (among so

many other things) became totally debilitating. This happened to me right when I

was at the top of my game with a job and company I loved, and I was even getting

back into ballet which I hadn't made time for in recent years. As a single mom

working f/t + I was always too busy carting my son around to all his activities

to make time for myself. Not that I regret that part; I only wish I had the

energy to take my son anywhere these days!

I'd gone a whole year (trying to find out what was happening to me and trying to

get well) before filing for SSI. I even tried returning to work (at a new job)

in '07 thinking I just needed to push myself harder *somehow*. Well, I only

lasted 5 weeks and I swear it nearly killed me. Blood pressure was tanking,

neuropathy was so bad in my legs I couldn't hold myself up, horrible IBS and

acid reflux, joint pain, brain fog to the point of a drunk like state, etc.,

etc. Don't ask me how I even managed the 5 weeks. I'd mainly been in training,

sitting in on meetings, reading employee manuals, etc. No real responsibilities

in that small amount of time. Plus I'd called in sick 2 or 3 days already--a far

cry from the girl who used to come in sick, roll over sick days, and never take

vacation!

When I first became ill to this point all I knew is that I was severely anemic

and had a thyroid problem which was supposed to be no big deal, " just take one

little pill the rest of your life " . I had no idea of the journey I was about to

embark upon and what a long one it would be.

I filed for disability in June 07 as just having CFS, adrenal insufficiency,

hypothyroidism and depression. After the 2 denial letters, which apparently is

very typical, I secured an atty. Still not knowing entirely what was going on,

but knowing there was something at the root, I'd simply looked for an atty who

specialized in CFS type cases and knew how to present the symptoms well. I'd

kept hearing from people on other boards that it's not necessarily what you

have, but how you are able to deal (or not deal) with it that counts. I am not

sure how true that is for most. I can only state my experience.

Well, my Lyme dx came just two weeks prior to my hearing. I thought, wow finally

something substantial that is going to help prove my case! But I will never know

bc I just got the judge's decision and there was no mention of Lyme whatsoever

in his findings. BUT…the good news is it didn't matter. The State awarded me

back payment all the way from the onset of my illness. I was beside myself. My

case was tough to prove and I'd kept hearing from others who had gone through

the process (with similar mystery illnesses) to only expect a partial award if

anything.

A couple things that I think really helped is that my doctor (an ND who I was

told would hold no water with the State) wrote an incredible letter on my behalf

giving very specific facts on how long I could sit/stand, etc, and my overall

inability to deal with stress--and of course my stamina issues. My atty also

said she found it was better if family members wrote letters rather than testify

in person. In my state (WA) they must be given the same weight as testimony.

Luck also played a role (not that there is anything lucky about having Lyme).

Apparently the judge hearing my case was known to be one of the more sympathetic

and easy to testify before (seriously, he was a VERY nice man). And the state's

" medical expert " --some guy 10 years retired whose main job, when still in

practice, had been basically to give medical exams to pilots (definitely not an

expert in endocrinology, and certainly not Lyme disease!)-- never showed up for

the hearing. I still don't know why he wasn't there and I don't care. All I know

is it was a relief. The scariest part of the whole process for me was wondering

what some ignorant, arrogant, know- it- all doctor was going to have to say

about my illness(es) and what kind of weight it was going to carry with the

court.

I hope you have the same kind of success I did with your case. Let me know if

you have any further questions about the process. I can't really answer the one

about school though. I have no idea on that. Sorry.

Hang in there and best of luck with SSI and most of all with your health!

Connie

>

> Hi all, I haven't been on in a while. My brain hasn't been with me. I have

just had my first denial for social security and have secured an attorney to

help with the process. I'm not too stressed about it at this point, but I have a

few questions if I may ask of you all. Has anyone had much success in getting

through the social security process with a Lyme diagnosis?

>

> Next question, though I am not physically able to handle a job right now and

mentally I cannot do what I used to do because a lot of my memory is gone and I

can't seem to remember new stuff without tons of effort, I really want to work.

Besides, financially my husband and I are beyond the breaking point, and he just

took another pay cut. Question is, is there any taboo with taking a few classes

(while I am in the social security black hole) to see if I could maybe brush up

on a few skills so that when I am physically ready to go back to work, mentally

I might be ready to do something as well? Or if there is nothing wrong with

taking classes, and I can do those either on a schedule of my choosing or

online, and I am having success at it at some point, maybe even work toward my

degree?

>

> I am really confused about what to do because, as I said, I want to work but I

cannot think of what I could do right now that anyone would possibly pay me to

do on a very sporadic basis with a mind and a body that won't cooperate. Once

upon a time I had big plans for my life.

>

> Thank you for your input.

> Jenni

>

[Guest guest]

Great letter Connie! It's so nice to hear a SS success story!

Cindi

Cindi Callanan, MsT, CST, BEC

[ ] Re: Social Security

Hi Jenni, I am new here, and newly diagnosed, but I feel your pain when it

comes to not being able to work. It is/was one of the hardest things for me. I

have been ill most of my life (I am 38). I have always been able to somehow get

through it up until 3.5 years ago when the fatigue and FM symptoms (among so

many other things) became totally debilitating. This happened to me right when I

was at the top of my game with a job and company I loved, and I was even getting

back into ballet which I hadn't made time for in recent years. As a single mom

working f/t + I was always too busy carting my son around to all his activities

to make time for myself. Not that I regret that part; I only wish I had the

energy to take my son anywhere these days!

I'd gone a whole year (trying to find out what was happening to me and trying

to get well) before filing for SSI. I even tried returning to work (at a new

job) in '07 thinking I just needed to push myself harder *somehow*. Well, I only

lasted 5 weeks and I swear it nearly killed me. Blood pressure was tanking,

neuropathy was so bad in my legs I couldn't hold myself up, horrible IBS and

acid reflux, joint pain, brain fog to the point of a drunk like state, etc.,

etc. Don't ask me how I even managed the 5 weeks. I'd mainly been in training,

sitting in on meetings, reading employee manuals, etc. No real responsibilities

in that small amount of time. Plus I'd called in sick 2 or 3 days already--a far

cry from the girl who used to come in sick, roll over sick days, and never take

vacation!

When I first became ill to this point all I knew is that I was severely anemic

and had a thyroid problem which was supposed to be no big deal, " just take one

little pill the rest of your life " . I had no idea of the journey I was about to

embark upon and what a long one it would be.

I filed for disability in June 07 as just having CFS, adrenal insufficiency,

hypothyroidism and depression. After the 2 denial letters, which apparently is

very typical, I secured an atty. Still not knowing entirely what was going on,

but knowing there was something at the root, I'd simply looked for an atty who

specialized in CFS type cases and knew how to present the symptoms well. I'd

kept hearing from people on other boards that it's not necessarily what you

have, but how you are able to deal (or not deal) with it that counts. I am not

sure how true that is for most. I can only state my experience.

Well, my Lyme dx came just two weeks prior to my hearing. I thought, wow

finally something substantial that is going to help prove my case! But I will

never know bc I just got the judge's decision and there was no mention of Lyme

whatsoever in his findings. BUT.the good news is it didn't matter. The State

awarded me back payment all the way from the onset of my illness. I was beside

myself. My case was tough to prove and I'd kept hearing from others who had gone

through the process (with similar mystery illnesses) to only expect a partial

award if anything.

A couple things that I think really helped is that my doctor (an ND who I was

told would hold no water with the State) wrote an incredible letter on my behalf

giving very specific facts on how long I could sit/stand, etc, and my overall

inability to deal with stress--and of course my stamina issues. My atty also

said she found it was better if family members wrote letters rather than testify

in person. In my state (WA) they must be given the same weight as testimony.

Luck also played a role (not that there is anything lucky about having Lyme).

Apparently the judge hearing my case was known to be one of the more sympathetic

and easy to testify before (seriously, he was a VERY nice man). And the state's

" medical expert " --some guy 10 years retired whose main job, when still in

practice, had been basically to give medical exams to pilots (definitely not an

expert in endocrinology, and certainly not Lyme disease!)-- never showed up for

the hearing. I still don't know why he wasn't there and I don't care. All I know

is it was a relief. The scariest part of the whole process for me was wondering

what some ignorant, arrogant, know- it- all doctor was going to have to say

about my illness(es) and what kind of weight it was going to carry with the

court.

I hope you have the same kind of success I did with your case. Let me know if

you have any further questions about the process. I can't really answer the one

about school though. I have no idea on that. Sorry.

Hang in there and best of luck with SSI and most of all with your health!

Connie

[Guest guest]

There is a good group where you can get many answers and some advice from

current or past professionals (disability advocates, attorneys, even past SSA

workers). Much of the content relates to LTD insurance, but even then it's good

info. It's " Disinissues " , if you want to search for it, or the url is:

Disinissues/

You have to sign up to be able to view anything and can't post if you use your

real name in either your email addy or in your user name (they take security

VERY seriously). I wish I'd have joined this group before I initially filed, but

have learned a lot since I did join. There was a member very recently (within 2

weeks) who said they got approved using Lyme, but I don't know more than that. I

emailed the person and asked, but heard nothing from them, which is fine.

That said, I was advised to use the component problems that Lyme has caused

rather than the L-word. For myself, we're using fibromyalgia, constant fatigue,

constant severe pain, problems with concentrating/learning/memory, depression,

etc. rather than the L-word. All of these things are true to Lymies, and they do

keep the judge (who has little time) from having to study up and maybe get

embroiled in the Lyme Controversy.

My advice, since you're early on, is to MAKE SURE YOU KNOW WHAT YOUR MEDICAL

RECORDS SAY. Cannot stress that enough! I first applied in 2005, then found out

that when I saw my GP specifically for severe neck pain, she was writting " pain

well controlled " in my chart! Most places will not charge you for a copy of your

own medical records if you tell them it is for " personal use " or for " continuity

of care " (only Kaiser charged me, and I had lots of records to gather).

See your doctor(s) as much as is reasonable for your conditions, and keep all

appointments. Even so, keep tabs on your records: I've seen my doc every month

for 15 months, to talk about my pain and renew my pain med Rx's... but they've

been writing " Lyme disease " in my chart as the reason for the visit! Not good,

since we never talk about Lyme. Just makes more work for my attorneys and

myself.

Disinissues mentions that, if you're able to go to school, you're able to do

sedentary work. I personally want to get my life back, and we're on the brink of

bankruptcy ourselves, but I couldn't go to school: not only do I have learning

problems, but a low frustration level because of the changes Lyme wrought in my

brain (and, truth be told, depression). And even if I could attend a class on

one day, it doesn't mean I'd be able to go the next time... you see what I mean?

I did write in my forms that I wanted to try Voc Rehab if they thought I could;

because of other issues I have, I'm twice as bad now as when I applied 3 years

ago and doubt whether I could pull that off either.

Keeping good notes about your symptoms might help, whether they're attibutable

to Lyme or not. I just note symptoms and their severity, maybe what (if

anything) caused it. It has come in handy when I've had to fill out forms or try

to write notes for my attorney.

Way too much typing... but good luck! Wish me luck: my hearing is in about 3-1/2

weeks.

>

> On Oct 18, 2009, at 9:45 PM, bellapazza68 wrote:

>

> > Hi all, I haven't been on in a while. My brain hasn't been with me.

> > I have just had my first denial for social security and have secured

> > an attorney to help with the process. I'm not too stressed about it

> > at this point, but I have a few questions if I may ask of you all.

> > Has anyone had much success in getting through the social security

> > process with a Lyme diagnosis?

> >

> > Next question, though I am not physically able to handle a job right

> > now and mentally I cannot do what I used to do because a lot of my

> > memory is gone and I can't seem to remember new stuff without tons

> > of effort, I really want to work. Besides, financially my husband

> > and I are beyond the breaking point, and he just took another pay

> > cut. Question is, is there any taboo with taking a few classes

> > (while I am in the social security black hole) to see if I could

> > maybe brush up on a few skills so that when I am physically ready to

> > go back to work, mentally I might be ready to do something as well?

> > Or if there is nothing wrong with taking classes, and I can do those

> > either on a schedule of my choosing or online, and I am having

> > success at it at some point, maybe even work toward my degree?

> >

> > I am really confused about what to do because, as I said, I want to

> > work but I cannot think of what I could do right now that anyone

> > would possibly pay me to do on a very sporadic basis with a mind and

> > a body that won't cooperate. Once upon a time I had big plans for my

> > life.

> >

> > Thank you for your input.

> > Jenni

[Guest guest]

Something from my lyme resource cd in the financial folder...

www.lyme-resource.com

You can lead a person to a fact, but you can't make them think! -

.

From: on behalf of <snip>

Sent: Friday, July 03, 2009 1:49 PM

Subject: [ ] Re: HELP! Need lawyer now!

My guess is that this is a reflection of your medical records and not

necessarily Social Security or your attorney. Your records need to show

that you cannot work. The diagnosis is often irrelevent. The important

issue is what kinds of problems you are having. Someone earlier mentioned

cognitive, etc. Your physician may not have documented all of your

problems as far as activities of daily living. Until you actually get to

the hearing stage, it is all about medical records. Have you seen your

medical records? They should be in the files that Social Security used to

make the determination. There may be some missing, also.

Before I retired, I supervised a unit of Social Workers who did nothing but

get welfare recipients on Social Security Disability and SSI. Most of the

problems revolved around medical records. The diagnosis not not too

important as long as you are not bed-bound or terminal.

> Re: [ ] Social Security

>

> I don't personally know anyone who's gotten a SS approval on Lyme

> (though there are rumors it's happened). But it may be useful

> to know

> that even in the CFS community -- where there is a much

> stronger legal

> mandate for Social Security to accept them -- people routinely avoid

> mentioning CFS at all, and instead try to get themselves approved on

> the basis of the one or two symptoms that are most obviously

> disabling

> them.

>

> An SS adjudicator may think Lyme is overblown and CFS doesn't exist.

> But when presented with someone who has been clearly diagnosed, say,

> with significant cognitive dysfunction, or crippling arthritis, or

> chronic asthma -- things they encounter pretty normally, in

> general --

> they have a lot harder time arguing about it. This strategy doesn't

> give them room to dispute the cause; instead, they're left to simply

> assess how disabiling the effects are. That's a much easier

> battle for

> you to win.

>

> Knowing this, some Lyme and CFS people carefully document their

> disabling arthritis or neuropathy or autoimmune issues -- something

> it's comparatively easy to get a doctor to do -- and simply present

> that as their chief reason for applying. Using the L-word or the C-

> word or whatever suggests right out of the gate that you're a

> malingerer. Leaving it out of the conversation entirely

> deprives them

> of the chance to go there, and focuses them back on your

> actual issues.

>

> Sara

>

[Guest guest]

Hi...I don't post often, but read daily. I'm caregiver to my " sister " (40 year

friendship qualifies us as sisters!!) who contracted Lyme in the late 70's.

We are in Ohio.

She receives Social Security Disability for the diagnosis of Lyme Disease.

What helped her win her case on the first try were all of the testimonals she

had from friends, co-workers and realtives.

She asked everyone she knew to write a " To Whom It May Concern " letter being

brutally honest about the changes we had witnessed in her health.

She had probably 30 letters when she went for her hearing. How the letter was

prepared was not important - the content is what mattered.

Some were typed, some hand written on school notebook paper, some

printed...didn't matter.

I remember it broke my heart to have to put on paper how I noticed specific Lyme

symptoms she had - but all the letters helped her win her case.

Best of luck,

Sandy T

Trenton OH

__________ Information from ESET NOD32 Antivirus, version of virus signature

database 4526 (20091020) __________

The message was checked by ESET NOD32 Antivirus.

http://www.eset.com

[Guest guest]

Dear Sandy,

What a wonderful thing for you and her other friends to do and how wonderful

that you all care so much. So many of us have had family/friends criticize and

condemn us for having lyme and being sick ... it's so nice to hear the other

side!

Cindi

Cindi Callanan, MsT, CST, BEC

Re: [ ] Social Security

Hi...I don't post often, but read daily. I'm caregiver to my " sister " (40

year friendship qualifies us as sisters!!) who contracted Lyme in the late 70's.

We are in Ohio.

She receives Social Security Disability for the diagnosis of Lyme Disease.

What helped her win her case on the first try were all of the testimonals she

had from friends, co-workers and realtives.

She asked everyone she knew to write a " To Whom It May Concern " letter being

brutally honest about the changes we had witnessed in her health.

She had probably 30 letters when she went for her hearing. How the letter was

prepared was not important - the content is what mattered.

Some were typed, some hand written on school notebook paper, some

printed...didn't matter.

I remember it broke my heart to have to put on paper how I noticed specific

Lyme symptoms she had - but all the letters helped her win her case.

Best of luck,

Sandy T

Trenton OH

__________ Information from ESET NOD32 Antivirus, version of virus signature

database 4526 (20091020) __________

The message was checked by ESET NOD32 Antivirus.

http://www.eset.com

[Guest guest]

Connie, would you be willing to send me the name of your attorney off-

list?

Thanks,

Sara

On Oct 20, 2009, at 6:02 AM, Cindi Callanan wrote:

> Great letter Connie! It's so nice to hear a SS success story!

>

> Cindi

>

> Cindi Callanan, MsT, CST, BEC

>

[Guest guest]

Can you use apnea for disability if you have a CPAP machine?

Waterloo

On Mon, Oct 19, 2009 at 9:34 PM, Cindi Callanan

<cindicallanan@...>wrote:

> One other thing you can have the lawyers use, is chronic sleep apnea, which

> creates such tremendous fatigue, one can't work, function, etc. Many of us

> have it and don't even know it. I went for a sleep study last year and was

> shocked... they told me I had woke up on the average of once a minute or

> more all night... and had daytime narcolepsy, as well!

>

> Also, some of the gut disturbances, IBS, etc, might help you qualify.

>

> Good luck, Cindi

>

> Cindi Callanan, MsT, CST, BEC

>

[Guest guest]

Jenni and others,

I just wanted to share that I know what it feels like to be young and unable to

work. This is not to take away from others who have also become disabled. I'm 31

and have been on disability for 5 1/2 years. I'm am blessed that my insurance

company pays my disability; I am not on SSD. They did hire someone to represent

me. Of course I did go through the denial letters as well, in the beginning.

Although, today, there are so many other things in my file, so many diagnoses I

did not have before. Anyway, I thought they hired a lawyer. I was mistaken. At

my hearing this " representative " did not speak one word for me, and if I could

have represented myself I would have had a much better chance of winning!

My " expert " was a retired cardiologist! In his day fibromyalgia didn't even have

a name, nor was it considered an actual problem or disability. Instead he said

he thought it was psychosomatic. My rep later told me to act crazy!! I refused

to allow anything in my file that disregarded my real illness and alleged it was

in my head (or was false). Now, I already was recieving benefits, so I was not

desperate. This will not give me more income.

I was hit with FMS right out of college and after a neck surgery, at age 22, but

chronic pain hit at 21 with neck problems, and Sjogrens hit at age 19. I was hit

hard and life became debilitating right away. Within 6 months I was told to buy

a cane, could not stand for longer than a min, barely walk, etc, therefore could

not do my Christmas shopping. I could list endlessly the problems/symptoms I

have. But FMS chronic pain and fatigue sums up a lot of my main problems. I have

brain fog with a poor memory, difficulty with word retrieval, and I always lose

what I'm saying in the middle of a sentence. Of course there is neuropathy,

migraines, chronic head and facial pain, IC, TMJ, IBS, carpal tunnel, SICCA,

every type of pain you can come up with, and endless symptoms.

I feel that I have lost out on my 20s. I am thankful I had fun college years. I

slept my way through graduate school. Well, I slept as others studied. But I had

to give every ounce of myself, was very ill, needing sleep about every 4 hours,

and all night long.

I knew I was too sick to work, but I had to try out of grad school. I feel that

I worked myself onto my death bed until there were strings of days I could not

get out of bed and make it to work. I fought a good fight. I slept 16 hrs a day,

all weekends, I was in bed as soon as I got home each day. I would have to crawl

to the bathroom each morning. I would lay on the floor sleeping after a shower

because it took every ounce of energy out of me. I know these pains.

As a young person, it was impossible to accept so I fought it instead of

accepting it and fighting to get better. It is devestating when your peers are

getting into careers, becoming successful, having children, and moving on in

other ways. And in comparison I was fighting for my life, trying to learn all I

could, and completely devestated and lost.

Today, I see that I am on an important path and there are lessons that I need to

learn. I have learned so many already. I have no choice to go on, to continue

the fight, but to listen to my body and give it the rest it needs. I don't

believe that I am suffering in vain, rather I believe that God is using me to

help others, and I'm sure there is a much bigger plan than I can imagine right

now.

Well, I started blabbing, but wanted to share that someone understands how it

feels to be young, and fighting this disease.

> >

> > Hi all, I haven't been on in a while. My brain hasn't been with me. I have

just had my first denial for social security and have secured an attorney to

help with the process. I'm not too stressed about it at this point, but I have a

few questions if I may ask of you all. Has anyone had much success in getting

through the social security process with a Lyme diagnosis?

> >

> > Next question, though I am not physically able to handle a job right now and

mentally I cannot do what I used to do because a lot of my memory is gone and I

can't seem to remember new stuff without tons of effort, I really want to work.

Besides, financially my husband and I are beyond the breaking point, and he just

took another pay cut. Question is, is there any taboo with taking a few classes

(while I am in the social security black hole) to see if I could maybe brush up

on a few skills so that when I am physically ready to go back to work, mentally

I might be ready to do something as well? Or if there is nothing wrong with

taking classes, and I can do those either on a schedule of my choosing or

online, and I am having success at it at some point, maybe even work toward my

degree?

> >

> > I am really confused about what to do because, as I said, I want to work but

I cannot think of what I could do right now that anyone would possibly pay me to

do on a very sporadic basis with a mind and a body that won't cooperate. Once

upon a time I had big plans for my life.

> >

> > Thank you for your input.

> > Jenni

> >

>

[Guest guest]

Hi All! Believe it or not, I have heard of somebody who got permanent

disability (SS) with LD as a sole diagnosis; apparantely the judge had a niece

with lyme...talk about luck! I do know that the third time is a charm, or so

I've heard as far as denials. I have been denied twice, am awaiting a hearing

and have hired a company to represent me; they say they have over a 95% sucess

rate and over 80% is at this level. LD, especially, with all the negative test

results I have, will be difficult but I was told it is not the diagnosis, but

the impairment (or reasons you cannot work) they take into account. In the

meantime, I qualified for a year of EDD (state disability) and an extra year of

a work related short term disability policy I didn't even know was a benefit

until I was moving and found the paperwork. Check and see if your company

offers STD as part of your benefit package; it is currently paying 60% of my

salary which is keeping my son and I off the street until I get well or a

permanent disability decision.

The disease isn't bad enough but we have to worry about how to survive

financially; pretty much sucks but there is hope; best to all, robin

ps; I would appreciate any input regarding literature,reports,etc of why I could

be testing negative or anything else to show the judge on my hearing date. I

have absolutely NO positive labs (except babesia) according to CDC standards yet

of course my LLMD has zero doubt; even found the tick, etc, etc; just need

something in writing to show the judge; scared he's going to look at all my

labwork and deny me. thanks

>

> > Hi all, I haven't been on in a while. My brain hasn't been with me.

> > I have just had my first denial for social security and have secured

> > an attorney to help with the process. I'm not too stressed about it

> > at this point, but I have a few questions if I may ask of you all.

> > Has anyone had much success in getting through the social security

> > process with a Lyme diagnosis?

> >

> > Next question, though I am not physically able to handle a job right

> > now and mentally I cannot do what I used to do because a lot of my

> > memory is gone and I can't seem to remember new stuff without tons

> > of effort, I really want to work. Besides, financially my husband

> > and I are beyond the breaking point, and he just took another pay

> > cut. Question is, is there any taboo with taking a few classes

> > (while I am in the social security black hole) to see if I could

> > maybe brush up on a few skills so that when I am physically ready to

> > go back to work, mentally I might be ready to do something as well?

> > Or if there is nothing wrong with taking classes, and I can do those

> > either on a schedule of my choosing or online, and I am having

> > success at it at some point, maybe even work toward my degree?

> >

> > I am really confused about what to do because, as I said, I want to

> > work but I cannot think of what I could do right now that anyone

> > would possibly pay me to do on a very sporadic basis with a mind and

> > a body that won't cooperate. Once upon a time I had big plans for my

> > life.

> >

> > Thank you for your input.

> > Jenni

> >

> >

> >

> > ------------ --------- --------- ------

> >

> > For free up to date information about Lyme disease and the known

> > co-infections delivered to your email address see:

> > http://health. groups.. com/group/ Robynns_Lyme_ List/

> >

[Guest guest]

You do not get Social Security Disability [RSDI] based on a diagnosis of lyme.

You get RSDI based on how you manage with the disease as far as activities of

daily living and how well your functioning is documented in your medical

records.

Kathleen

> I never heard of one person who's gotten approval on lyme.

[Guest guest]

Hi,

Thanks for the info. I will ask my family and friends to start writing....and

then hope for the best.

________________________________

From: Sandy Tusing <stusing@...>

Sent: Tue, October 20, 2009 12:52:03 PM

Subject: Re: [ ] Social Security

Hi...I don't post often, but read daily. I'm caregiver to my " sister " (40 year

friendship qualifies us as sisters!!) who contracted Lyme in the late 70's.

We are in Ohio.

She receives Social Security Disability for the diagnosis of Lyme Disease.

What helped her win her case on the first try were all of the testimonals she

had from friends, co-workers and realtives.

She asked everyone she knew to write a " To Whom It May Concern " letter being

brutally honest about the changes we had witnessed in her health.

She had probably 30 letters when she went for her hearing. How the letter was

prepared was not important - the content is what mattered.

Some were typed, some hand written on school notebook paper, some

printed...didn' t matter.

I remember it broke my heart to have to put on paper how I noticed specific Lyme

symptoms she had - but all the letters helped her win her case.

Best of luck,

Sandy T

Trenton OH

__________ Information from ESET NOD32 Antivirus, version of virus signature

database 4526 (20091020) __________

The message was checked by ESET NOD32 Antivirus.

http://www.eset. com

[Guest guest]

Good point!

My wife suddenly developed sleep apnea a couple years ago! It wasn't till

she had been on salt/c for about a year and then cs/c for 3 months that it

suddenly went away as mysteriously as it came. We suspect it's the Lyme

infection! In fact if she misses a few days of CS/C then the apnea starts to

return!

www.lyme-resource.com

You can lead a person to a fact, but you can't make them think! -

> Re: [ ] Social Security

>

> One other thing you can have the lawyers use, is chronic

> sleep apnea, which creates such tremendous fatigue, one can't

> work, function, etc. Many of us have it and don't even know

> it. I went for a sleep study last year and was shocked...

> they told me I had woke up on the average of once a minute or

> more all night... and had daytime narcolepsy, as well!

>

> Also, some of the gut disturbances, IBS, etc, might help you qualify.

>

> Good luck, Cindi

>

> Cindi Callanan, MsT, CST, BEC

>

[Guest guest]

Hi all.... It has been a long time since I have posted anything. I do try to

keep on most of the posts, but just have not been able to focus my brain enough

to answer any of them...

But this one, I just felt that I had to jump in on.... Just please bear with me,

if I start rambling here... LOL

I live in Central NY and have not been able to work since June 2006.. After

leaving my job, I collected on their disability until it ran out and still not

being well enough to return and with an official diagnosis of Fibromyalgia and

only a suspected diagnosis of Lyme, I applied for SSDI... I was denied, as most

are, the first time. I hired one of the top lawyers in my area to fight for

me...and I was approved the second time, just a couple months ago, though only

for SSI, because they told me I did not have enough credits for the

disability...

My lawyer was wonderful.. He was totally aware that myself and my PCP felt that

my Fibromyalgia was Lyme caused, but since we had no viable proof or positive

tests, he " ran with " the Fibromyalgia diagnosis..

During my hearing, he focused not on the diagnosis, but what my illness,

regardless of what it was, was doing to my daily life...

My judge was very nice and also seemed very sympathetic to my problems..

So I agree with those that say that it is not so much the diagnosis of what is

wrong, but what your symptoms, regardless of what they are, affect your daily

life and ability to work...and the help of a good lawyer is a must, I

think...... They are so worth it, if you get the right one...

For those that are still trying, I pray that you get the answer that you so

desperately want in your appeal cases... I know how hard it is to try to hold

things together while you wait....

Ellen

[Guest guest]

Ellen,

Thank you for your kind words. However, getting on Social Security Disability

can be done without an attorney. Before I retired, I supervised a whole unit of

Social Workers who did nothing but get welfare clients on Social Security

Disability and SSI. Our biggest problem was the use of illegal drugs and

alcohol & getting psychological evaluations, but that is another issue for

another several books. These were the major reasons we ended up having our

clients go to hearing and using an attorney.

You do not need to be an attorney to get someone on disability, but you need two

things:

Medical records--most medical records are sadly lacking because most medical

practitioners do not realize that a diagnosis is not enough. It is all about

how you function with your diagnosis. That needs to show in your medical

records.

In your application documentation, you personally must describe how you function

with all of your diagnoses, including non lyme related health issues like type

II diabetes, controlled high blood pressure, etc.

The difference is that attorneys and other well-trained advocates know all of

this and are truly able to assist their clients. As a nonpractitioner, no one

tells you this stuff and often medical practitioners are providing inadequate

advice because they believe that all you need is a diagnosis. They do not

realize that your inability to be on your feet for ten minutes to fix dinner

might make a difference in disability allowance or denial--most medical

practitioners will not document everything you tell them like your inability to

fix your meals, i.e. feeding yourself.

Kathleen

Retired Social Worker Supervisor

During my hearing, he focused not on the diagnosis, but what my illness,

regardless of what it was, was doing to my daily life...

My judge was very nice and also seemed very sympathetic to my problems.. So I

agree with those that say that it is not so much the diagnosis of what is wrong,

but what your symptoms, regardless of what they are, affect your daily life and

ability to work...and the help of a good lawyer is a must,

[Guest guest]

,

I'm 41, not 31... but THANKS!

After a crappy day (only physically), I was so glad to read this! Not glad

you're in this boat, but glad to have someone who seems to know exactly what

it's like.

I want you to come to my hearing with me and help explain it! I get all

side-tracked and lose what I meant to say and worry about that more than

anything else.

Gotta get to bed, but thanks a lot.

>

> Jenni and others,

>

> I just wanted to share that I know what it feels like to be young and unable

to work. This is not to take away from others who have also become disabled. I'm

31 and have been on disability for 5 1/2 years. I'm am blessed that my insurance

company pays my disability; I am not on SSD. They did hire someone to represent

me. Of course I did go through the denial letters as well, in the beginning.

Although, today, there are so many other things in my file, so many diagnoses I

did not have before. Anyway, I thought they hired a lawyer. I was mistaken. At

my hearing this " representative " did not speak one word for me, and if I could

have represented myself I would have had a much better chance of winning!

>

> My " expert " was a retired cardiologist! In his day fibromyalgia didn't even

have a name, nor was it considered an actual problem or disability. Instead he

said he thought it was psychosomatic. My rep later told me to act crazy!! I

refused to allow anything in my file that disregarded my real illness and

alleged it was in my head (or was false). Now, I already was recieving benefits,

so I was not desperate. This will not give me more income.

>

> I was hit with FMS right out of college and after a neck surgery, at age 22,

but chronic pain hit at 21 with neck problems, and Sjogrens hit at age 19. I was

hit hard and life became debilitating right away. Within 6 months I was told to

buy a cane, could not stand for longer than a min, barely walk, etc, therefore

could not do my Christmas shopping. I could list endlessly the problems/symptoms

I have. But FMS chronic pain and fatigue sums up a lot of my main problems. I

have brain fog with a poor memory, difficulty with word retrieval, and I always

lose what I'm saying in the middle of a sentence. Of course there is neuropathy,

migraines, chronic head and facial pain, IC, TMJ, IBS, carpal tunnel, SICCA,

every type of pain you can come up with, and endless symptoms.

>

> I feel that I have lost out on my 20s. I am thankful I had fun college years.

I slept my way through graduate school. Well, I slept as others studied. But I

had to give every ounce of myself, was very ill, needing sleep about every 4

hours, and all night long.

>

> I knew I was too sick to work, but I had to try out of grad school. I feel

that I worked myself onto my death bed until there were strings of days I could

not get out of bed and make it to work. I fought a good fight. I slept 16 hrs a

day, all weekends, I was in bed as soon as I got home each day. I would have to

crawl to the bathroom each morning. I would lay on the floor sleeping after a

shower because it took every ounce of energy out of me. I know these pains.

>

> As a young person, it was impossible to accept so I fought it instead of

accepting it and fighting to get better. It is devestating when your peers are

getting into careers, becoming successful, having children, and moving on in

other ways. And in comparison I was fighting for my life, trying to learn all I

could, and completely devestated and lost.

>

> Today, I see that I am on an important path and there are lessons that I need

to learn. I have learned so many already. I have no choice to go on, to continue

the fight, but to listen to my body and give it the rest it needs. I don't

believe that I am suffering in vain, rather I believe that God is using me to

help others, and I'm sure there is a much bigger plan than I can imagine right

now.

>

> Well, I started blabbing, but wanted to share that someone understands how it

feels to be young, and fighting this disease.

>

>

>

>