posted
i posted earlier, but read this entire thread now .... wow; what stories and lives we have lived!
3 yrs. ago 6-=04, i was CORRECTLY diagnosed with chronic lyme disease.
MISDIAGNOSED for 34 years going back to age 21, jan. 1970 by 40-50 mds/specialists.
culprit: tick from a LIVE XMAS TREE as i got sick early jan. 1970; had NO pets; sub-zero so no outside doings, my roommates didn't have pets, and folks always had LIVE xmas tree.
mainly with: at that time MONO; last year called EPSTEIN BARR VIRUS 3 TYPES; chronic fatigue, fibromyalgia, EXTREME SENSITIVIES to lights, glare, reflection; sounds/noise; chemicals galore; being startled; TMJ, irritable bowel/bladder, lupus 3 times never treated; endometriosis, diabetes 2 six months before my correct lyme dx; sleep apnea 06; migraines/headaches, heel spurs, plantar fascitis, ETC.
2 SSDI apps taking 5 full years to be approved! 1st 4 years i had a lawyer from phoenix, but he quit me right after my lyme dx! good thing, as what i found in both files disturbed me. many thhings i submitted to him weren't submitted to DDS staff determining approval!
i also reread every medical report in 2nd making notes as i went when i was dx with this/that to make a table chart when i finished.
i feel it was this 2+ months of detailed work that finally won my case plus the RSD, residual function capacity and MENTAL iq testings. i won 2nd one myself; so NO EXPENSES DUE TO LAWYER; he forfeited all expenses just to get rid of me!
my heart goes out to every one of us for what we should NOT HAVE HAD TO GO THRU AND NOW!
we are disabled; we don't look sick unless it's the scooter, walker, wheelchair, cane, crutches, etc. that give it away.
we'll all keep demanding OUR LYME RIGHTS and being treated EQUALLY TILL THE DAY WE DIE!
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breathwork
Frequent Contributor (1K+ posts)
Member # 567
posted
I used to be a nurse and a therapist.... Went back to grad school again when the lyme reared its ugly head. So, no disability as a student.
I'm a mom of five kids, all adults as the last two turned 18 this year.
Wife of husband who has been fighting esophageal cancer for two years...he's doing marvelously now, but I'm worse than before by far..Stress is a killer...
I can't imagine going back to nursing or therapy. My short term memory is critical for both...My patients deserve better.
So, here I am..good some days. Horrible others...Husband somewhat better than me...but still healing slowly..
So we're both out of work, have five kids in college...going broke much more rapidly than we would like.
I haven't a clue as to how things will proceed, but will keep the faith!!!!
Posts: 1062 | From CA USA | Registered: Jan 2001
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
I have been disabled for 4 years.
I was working in advertising at a newspaper in Maryland and had just gone on maternity leave when the tick bit me.
I thought I'd get better and go back to work but the illness forced me to call my boss and tell her I wouldn't be able to come back.
I haven't been able to work since and now get SS disability.
I now keep thinking about the roads not traveled in my life. I have a history degree and wish I could go on and get my master's and possibly be a professor. I also would love to be a successful author and researcher.
Having Lyme gives you a lot of time to think. Perhaps it's like what old people do when they look back on their lives and wish they'd done some things differently. It's just that I'm not doing all this reflecting in my old age, but in my middle-age!
Now that I finally know what I want to do when I grow up, I'm too disabled to pursue it!
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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EtherealGirl
Unregistered
posted
Since I initally posted last year, I have had my SSDI hearing. It went very well. The vocational expert witness said that there is no work that I can do. I hope to win this time, three time's a charm, right?
I have been getting steadily worse over the years. I believe I'm in full relapse and will have to start taking the abx again. Not looking forward to the herxes though!
Good luck to everyone battling with SSDI. I've been fighting for nearly two years.
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posted
rehabilitation counselors are the ones trained to help us Lymies figuer out what types of work we can do if they are flexible enough to some accommodations we may neet. I am a former rehab. counselor.
-------------------- RV Posts: 249 | From Healing in USA | Registered: Mar 2005
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posted
Wow, this is really sad to see some really good people disabled. Most of you had successful jobs.
Prolly have been sick with Lyme my whole life, symptoms appeared Winter of 2005 disabled by August of 2006, started treatment in Febuary of 2007. 23 years old was a full time student, waiter on the side, applyed for SSDI last month. Brian
Posts: 217 | From Everywhere | Registered: Nov 2006
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EtherealGirl
Unregistered
posted
Brian, good luck with your SSDI journey. Just be prepared that it could take years before you get approved. Don't give up!
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bettyg
Unregistered
posted
best wishes to the woman who just had hear hearing, did voc rehab man say on BOTH HYPOTHETICAL QUESTIONS ... YOU COULD DO NO WORK FOR EITHER?!!
my 1st ssdi judge didn't pay any attention to what that man said; no jobs and denied me!
3yrs later, 2nd ssdi judge....HEAD JUDGE OVER ALL OTHERS heard my case from ME without a lawyer. i was APPROVED going back to denial of 1st one!
took 5 yrs. of hell!!
at least you all won't go thru what we did as i, minoucat, and conniemc have given info that is now compiled and get the benefit of ALL OUR SSDI KNOWLEDGE to win 1st time, 1st step!!! /////////////////////////////////////
i wish you both well on your ssdi journeys.
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EtherealGirl
Unregistered
posted
Betty, for the first hypothetical question she came up with three jobs I could do. Upon further questioning from the judge and my lawyer, she said that I could not do any of them.
I'm on pins and needles waiting for my decision!
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posted
Very touching and sad stories from people out there. I really hope that a true cure for all TBDs is figured out in the very near future.
Has anyone worked for a company that provided long term disability and actually received (or is receiving) it?
-David
-------------------- Same nightmare, different day! Posts: 401 | From East Coast | Registered: Nov 2005
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bettyg
Unregistered
posted
e girl,
thanks for your reply. did judge say anything to you/lawyer about the anticapated time until they made a decision.
also, keep a lookout in your bank account! when you win since we are required to give a checking acct. no. when we apply, they sometimes DIRECT DEPOST without out knowledge.
i was called by our kansas city regional hq, the man in charge of things, verifying it was checking vs. savings, etc.
when talking to him also, he explained he dealt with the difficult cases/"people" like me! we hit it off well, but i could see where he could turn nasty too.
in my 2nd claim, i never got a letter after DENIED RECON that iowa's dds folks would NOT work up my case to be ready for ALJ hearing!
i pursued w/lawyers office why i wasn't called saying when june date would be; she called des moines office. we sent you and claimant/ME a letter in jan. stating nothing would be done until APPEALS COUNCIL DECIDES.
i raised holy you know what! i emailed the DDS DIRECTOR and explained what had happened, how diappointed i was in iowa staff, and had a few moer choice words.
that same day, received reply back from director that THEY couldn't do anything, it would have to come out of kansas city regional office. i asked for name of director, and sent everything to them plus more words from me!
next day i had an email back from KC director too referring me back to the HEAD ALJudge in DM!
i also emailed the social security national director, and got a brief comment back sayng DM would give me answers.
chief alj wrote my lawyer copying me that i contacted them direct vs. using him as lawyer. i was very upset. he was SURE as a lawyer that he had talked to me about my case and this letter should not have been written. that's how we learned in THEIR file was a typed letter they SUPPOSEDLY sent to us both ... NEITHER OF GOT THIS LETTER!!
so later i wrote an apology letter to this judge but stressed also what had/NOT been going on. i would never have contacted them and been angry HAD WE BOTH RECEIVED JAN. letter as they stated we had.
i also requested NOT to have same judge for 2nd hearing! guess who i got? CHIEF ALJ who at the beginning said everything in the past stays there. but i brought up certain things as they pertained to my case.
after lawyer got REPRIMAND letter from alj, he called me, and that's when he quit me then telling me he could NOT represent me in civil/federal court as he was not licensed too! he never volunteered this in 4 years as my lawyer.
i won my case due to really hard work of documenting every drs. appt., what was done/said that MATCHED SSDI'S REQUIREMENTS in their impairment list/comments!
also made sure i had residual function capacity and mental testings done. good luck!
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EtherealGirl
Unregistered
posted
Wow Betty, you sure did go through a lot. I'm so happy for you that you finally won.
The judge told me that I'd have his decision within one month.
I did give them direct deposit info two years ago, but I've since closed out that account. That could be a problem.
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
Disabled for 6 years now. Had lyme since childhood.
As a youth I was plagued with roaming pain and fatigue. As a young graduate student, was in and out of physical therapy. AS a young mother, I was told I have FMS. Continued to work after receiving M.A. degree, part time.
Third child still born (I'm sure now because of lyme).
Stopped working at that time. Had fourth child. All four births are daughters.
Moved to CT during fourth pregnancy. AFter she was born, I was reinfected two more times still not getting a diagnosis. Bed ridden by 2002.
December 2002 got a diagnosis and started with a llmd.
Been disabled since 2000. Four years of antibiotics and now my body is rejecting them. Hoping a rife machine might give me my life back. Not decided which to order yet and am reading the rife book right now.
Need to go back to work for my children's college monies. Husband makes a good living to support the five of us right now, so I am very lucky in that sense.
Husband and three daughters got lyme in CT. We are all chronic now.
God bless all of you. Your stories always touch me and sadden me.
Mary
Posts: 1034 | From North Carolina | Registered: Aug 2003
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bettyg
Unregistered
posted
e girl,
1 month; that's good! i suggest you GO to your LOCAL SS office, with the NEW INFO as to where to send your money!!
they need a bank depost slip or savings acct. no. regardless. they then get get this to DDS/ALJ office to EXPEDITE things when judge decides FAVORABLY! notice i emphasized you WILL BE APPROVED!! i've got my fingers crossed for you too!
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
I am holding on to my (low-paid) work with my fingernails, dangling from a cliff.
At least, that is what it feels like, and probably looks like too.
I had to give up some of my work last year, I was going downhill so fast before starting treatment. I am still working as I can.
Recently, after 10 months of abx and buhner herbs, I began to feel better but I am by no means in total remission. I am now taking a short leave from work to try to regain my health. I am optimistic and grateful for the gains I have made.
Posts: 2557 | From home | Registered: Aug 2006
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EtherealGirl
Unregistered
posted
Thanks for your advice and encouragement Betty. I'll do that!
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EtherealGirl
Unregistered
posted
Well, I lost my appeal again. That's three times.
I will fight this, but I have a feeling I'm on the five year plan like you Betty.
posted
I have been disabled... for... 9 years now?
I got lyme when I was 7-8. When I was in the 6th grade I lost my ability to speak and form thoughts well. I also have become legaly blind from lyme, which has been a huge dissability in my life.
I have never been able to hold a job, for i get so sick very fast and have to quit. I recently had to drop out of college because the fatigue had me sleeping 20 hrs a day and my memmory was so bad i lost my ability to read.
Then I found out what had been wrong with me all these years (i found out 2 months ago).
Now I just have to wait to see what I get back, and what I don't. Maybe I will get to work one day.
posted
Amazing how many people disabled were teachers. Me too. At least that's what I'd been doing before I stopped working.
Apllied for disability but turned down, in appeal process now. Doubtful I will get it because I don't look sick and I can get around well. I try to walk or ride my bike every day even though I have dizziness/balance/co-ordination problems.
My handicaps are invisible. I am nearly deaf in one ear and suffer hyperaccusis and anxiety from noise. I never know when sounds will be hard to tolerate so my life has become quite limited, limited at least in the ways I can participate.
I also have severe Lyme-caused dyslexia and other comprehension difficulties. Lately, I see things and think they are what they are not.
Thanks for the post. When our world is shrinking we need to expand our thoughts and knowledge to include others.
Posts: 422 | From Luck home | Registered: Sep 2005
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