That said, I got sick in may of 2003 and was literally bedridden until June of 2006. The lyme attacked my central nervous system first, which was "a-typical", and the doctor's didn't diagnose me for almost three years.
However, once I started antibiotics in combination with VERY SLOW, METHODICAL Occupational, Aquatic and Physical therapy, I am now able to get through each day, usually without a nap. How's that for a runon sentence???
Anyway, I'm still not where I want to be, but I say "I've joined the living" again.
Trust me, you're not alone. listen to your llmd, set SMALL goals, try to think positive, practice relaxation and visual imagery and take small steps forward every day!
You'll get there! Have faith!
-------------------- When given lyme make lymeade! A tick check a day keeps lyme away! [email protected] Raising awareness by creating as many lymebassadors as possible! Posts: 158 | From Northern Wisconsin | Registered: Oct 2005
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
I finally had to leave the job I loved, teaching sixth grade, in the fall of 2001. I made it for three weeks, two with the kids there. I thought I would just take a few days off, but that didn't happen. I just got worse.
I went through a lot of he** getting a dx. At the same time I developed extremely low white blood count, which ultimately turned out to be due to a med I was on, but I didn't learn that until after I had gone through a bone marrow biopsy (talk about scary, and painful!) That took me a month to recover from.
I left school on Sept. 18 and got a dx of CFS and FM in early Dec. At least I got help for my symptoms, but it took until April 2006 to get the real dx of Lyme.
I've been on SSDI retroactive to 2002.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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Dave6002
Frequent Contributor (1K+ posts)
Member # 9064
posted
I was very ill and tested CDC positive for Lyme. Had been out of work for just two months. Now I work full-time and 80-90% better.
Posts: 1078 | From Fairland | Registered: Apr 2006
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i think my lyme is under control-but it gave me such bad arthritis i am disabled from that. need 2 new knees-2 thumb surgeries-and after all that i don't know if my back will be ok or not.
i'm 57. taught phys ed for 25 yrs. i want to get the surgeries and get back to some kind of work-but i've also had two concussions-one from the kids-and all kinds of "normal" stuff keeps going wrong so i haven't been able to get my surgeries started.
i'm starting to think i might not get back to work.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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-------------------- Jeff Posts: 533 | From CA | Registered: Mar 2006
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Cobweb
Unregistered
posted
I've been on long term disability from work since April 2006. I tried to go for "reasonable accomodations" to keep working in the classroom-but was handed papers for disability instead. I am just into about 8 months treatment- I know I will not be able to get back into the physical nature of my work, but I am hoping to at least go back as a librarian someday.
posted
left work as a secretary who typed legal agreements 8 yrs. ago WITHOUT any benefits after working 30 yrs., 7 months at age 49; too young to get my retirement benefits.
took 5 yrs. of hello to get ssdi benefits; won it 1.5 yrs. ago going back 2.5 yrs. retro.
i was constantly sick for 36 years and used so much sick leave.
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tailz
Unregistered
posted
I first went out on short term disability from my full time job in 2000, and almost immediately afterwards, applied and won long term social security disability. I had been working as a veterinary receptionist no less! Before that I'd been a phlebotomist (vampire). At that point though, I literally asked myself if I'd be ALIVE the next day if I continued to work. I looked in the mirror and cried no.
I had depression, anxiety, and OCD, which I now realize were all Lyme related, but at the time I had no diagnosis for any of my physical symptoms, so I had to go for disability based on my 'psychiatric' dxs alone. I was sweating it, but that's how sick I felt. In fact, I told myself to just jump and pray God would catch me before I went 'splat', and He did.
It was scary though. I forget, but I think I only got 50% of my pay in the beginning, so I had to dig into my savings. Then when I won Social Security, my monthly amount was based on my lifetime earnings, and I had been a stay-at-home mom for most of my marriage, and then after my divorce, I only ever held low-paying jobs - full time, but nonetheless, low-paying.
Somehow I need to go back to work here. My monthly amount is nowhere near cutting it. My bank account is draining. And my sister can't help me much longer. She didn't even want to help me this long. Even what she sends me and what I get from Social Security doesn't cover even my basics, so the little I have left in my account is only ever going down.
My only hope here is a Rife Machine that gets here in 2.5 months. If that doesn't cure me - and fast - I'm not going to make it.
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klutzo
Frequent Contributor (1K+ posts)
Member # 5701
posted
I was a Psychiatric Social Worker, but moved to Florida when I started getting sick, and that enabled me to work another six years.
However, I could not find a job in my field here, so I worked typing Mortgage Loan papers for a law firm.
One day my arms and legs went numb and I collapsed at work and was put in the hospital with a dx of MS. Two more attempts at working led to immediate collapse again. Tests ruled out MS and my dx changed to FMS.
I've been on disability for FMS since January of 1986. In 1995 I had extensive testing showing severe brain damage, and my disability review was changed from every 3 yrs. to every 10 yrs. I was finally dx'd with Lyme 3 1/2 yrs. ago.
I am getting worse and life is closing in as I lose the things I could do before, one by one. Most of this is due to my heart damage, which has caused serious limitations and constant stress and fear. I have become invisible,a prisoner in my house, as others have gone on with their lives, and spend 90% of my time alone.
Due to allergy to effective ABX, I have had only various herbal protocols, and have found them to be like trying to stop a runaway train with a fly swatter. I am 55 but do not expect to see my 60th birthday, and even that may be overly optimistic.
My mission now is to get people with the FMS/CFS dx tested, since I believe most of them have Lyme, and most of them can take ABX. I don't want others to end up like me.
Sorry, I guess this was more info than you wanted!
Klutzo
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
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posted
I lost all jobs due to gradually increasing pain. Got disability for mental because my lawyer said we had no physical evidence.
Yet I didn't think it was a mental issue at all --I had physical pain. I was told I had fibromyalgia and no one knew what it was.
I went 25 years before a nurse told me online that she thought my symptoms were Lyme and had I ever been bitten by a tick. Answer: yes, in the summer of 1981. Not one medical person ever clued me in to this possibility.
it is very difficult dealing with symptom after symptom. At least now I have a name for it all.
Posts: 13116 | From San Francisco | Registered: May 2006
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
On & off for 20 years. Really pi$$'s me off. Because they where years 25-45 that are supposed to be the prime of my life.
On the other hand , even though I haven't been able to resume my painting carrer I have found other small ways of being creative while being disabled. And other small ways of finding happiness in what has been the shambles of my life.
If I had dwelled on everything I couldn't do or missed along the way I would have gone insane. I Like- I always wanted to have kids but was always too sick ect..
So, I believe you can be really disabled from Lyme and lose just about everything and suffer too but still find some quality of life somewhere along the way. It isn't easy but its possible.
Like-I can still love, lyme hasn't taken that away from me & I try to love everyone in my life totally. ( My dogs do benefit )
Not trying to blow sunshine but share my survial stragies.
Hope this helps
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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posted
I taught elementary school for 21 years before becoming disabled. That was 12 yrs ago. [At the time, I did not know my disability was from Lyme.]
I immediately began a costume jewelry business, which at times was very profitable. I still make angel pins which are sold in a theatre here. Now I market the mangosteen juice, which has helped me so tremendously.
I was treated for Lyme for 4yrs with abx, but continue to be under the care of my LLMD. It's been more than 6 yrs since beginning treatment.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
Totally disabled. Was a registered nurse and skated competitively as an adult before lyme. Had to forfit apartment and move in with parents, Out of bed 8 to 10 hours a day now. Vision is affected too, No longer able to drive due to vision loss.
Posts: 719 | From Delaware | Registered: Jan 2006
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Monica
Frequent Contributor (1K+ posts)
Member # 224
posted
In February of this year I was still getting to work every day under my own power, driving and using a walker. It was a sitting at a desk 8:30 - 5 job.
I've been disabled since then. I can't walk and spend 90% of my day in bed, although I am getting an electric wheelchair next week which should help with mobility.
Up until June I was still walking the 6 steps to the bathroom.
Posts: 1757 | From Somerset County, NJ | Registered: Oct 2000
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posted
Ive been sick since 1994 but wasn't officially declared disabled by the government until 1996. Lyme has become a life long disabling battle for me and not sure who's favor it will end up in,mine or the disease itself..
-------------------- Neil Posts: 697 | From Tucson, AZ USA | Registered: Apr 2002
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EtherealGirl
Unregistered
posted
I contracted Lyme in Feb. 2003. Worked until Dec. 2004 when I could no longer work. Have applied for SSDI and been denied twice. Hope to get it on appeal, because I'm going broke.
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posted
I've read all the posts and can totally relate. I am in a similar situation. The LLMD believes I've had Lyme for 25 years. It has affected every area of my life: complete heart block, fibro symptoms, CFS symptoms, vision, mental/emotional, unable to walk for weeks at a time, at one point spent 80% of my life in bed unable to think, concentrate, walk or function.
Before this, I was planned events & managed over 100 detailed projects per year doing behind the scenes work for fundraisers at a private college. All of that is gone. I used to plan dinners for 500 and now can hardly plan a birthday party for 7.
Applied for SSI/Disability 2x. Denied 2x. Going for a 3rd with a lawyer. It may be 12-18 months. We're going broke.
Kayda
Posts: 582 | From midwest | Registered: Nov 2006
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posted
started having symptoms 1-04. finally had to quit work 10-05. i am a n rn and i own 2 drive thru espresso shops,worked at those too. started getting ssi retoactive from date of diagnosis 4-06. don't think i'll ever be able to work as an rn again. no energy, unable to concentrate, terrible facial pain, brain pressure,left sided neuropathy
Posts: 76 | From Kalispell, Montana | Registered: Dec 2006
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quote:Originally posted by AP: I contracted Lyme while working on a ship, and am being compensated (not nearly enough) for my medical expenses and time lost.
Now there's something I've never heard!! On a SHIP?? Please offer more info for this inherently curious person!
I'm sorry you're no longer able to do what you love. Most here can relate to that very well!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
I am disabled.
Well, I can get out in my power chair for an hour or two each day, open and close my blinds each day now, started being able to do my own grocery shopping last month and hope it continues, had a portable washer and dryer provided for my unit and can now do my own laundry now for the past two weeks, able to take my trash out when I need to now, able to take a hot epsom salt bath every other day or so now, able to be in a recliner during my down times now instead of having to be flat on my back, able to eat 3 meals a day now if I keep it simple and pace myself daily.
So, things are slowly picking up.
I was teaching and would have quite a nice income by now if I had not gotten sick. I also would have had my own home again.
Instead, I am currently living on SSI of $542 and in low income housing. I have not had a vehicle for 5 years now. This was not the plan but thankful for the independence that I do have.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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posted
I was in the Seychelle Islands, and I believe it attached itself while I was checking the mooring lines, but it's not easy to tell exactly what happened. There are about a zillion ways a tick could have gotten to me at work, but all that matters is that I got it "while in service of the vessel."
-------------------- Sometimes when I say �Oh, I�m fine� I want someone to look me in the eyes & say �tell the truth�
cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
Went out on short term disability with my company in Sept 2005......was forced back to work in December 2005 because of lack of communication with dr and short term disability company. I was almost terminated, so had to drag myself to work.
Sat most of the day wrapped in a blanket, BUT still trained a new person and got ALL work done.
From Dec 05- Feb 06- worked..or tried too...HR decided that it didnt appear to them that I could handle a 40hr week including working from home...so dr said work from home only....and company put me out on long term disability.
Was terminated in August 06- and now get long term...and applied for SSDI...waiting for appeal court date. The independent examiner thought i was fit to work.
Ive lost everything and continue to loose my life. Life as I know it no longer exists.
I cannot take abx without yeast, severe dibilitating yeast infections.
I also have a lovely disease called IC. Im getting my disability on the IC and lyme diagnosis.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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posted
I'm so sad to read about what everyone is going through.
I a job that I absolutely loved as a Legal Advocate for the disabled in June of 2001 and was mostly bed-ridden for two years.
I was diagnosed with CFS and FM and went on short-term disability with my employer that ran out after 6 months.
I was diagnosed with LD after seeing a LLMD is March 03 and was on antiobiotics for about 18 months including 3 months of IV.
I improved quite a bit after that but flare from time to time.
I was fortunate enough to sell some stock to survive financially and am now working for a family business doing pre-employment screening, etc. from home and have insurance that way.
I also am a licensed private investigator and want to build my business so I can continue working from home but I never seem to get enough energy or feel well enough to develop a good business plan and market my services.
Posts: 80 | From Salt Lake City, Utah USA | Registered: Apr 2004
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
There are way to many of us.
I bet you most of us are disabled cuz of idsa guidelines in one way or another
posted
I just can't believe this is happening in this world. This is so ubsurd that doctors can't diagnose lyme, then it is years later when its too late to ever being fully recovered.
When I read these stories, I cried. It made me not feel alone.
When will the medical community come together? When will these doctors that do not understand lyme see what is happening and be able to understand the disease and diagnose lyme?
Why is lyme hidden?
Lyme4
Posts: 60 | From RI | Registered: Dec 2006
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
I had been in business for myself as a freelance writer and national journalist when my Lyme really punched me. My CDC positive test result came after having been misdiagnosed for 9 years.
I made a decision to try, with all my effort, to keep working. Lived off some stock and retirement benefits (and the amazing help of friends and relatives) and worked very part-time when I first started taking antibiotics.
As my health slowly improved, I gradually increased my business.
Just a month or so ago (about 14 months after starting abx), I was called on-site for some corporate consulting work.
For me, it was like a tonic, provided I stayed easy on the job and unstressed (stress is an incredible trigger for my symptoms).
Now, I'm contemplating a return to full-time employment. basically, I just take things a day at a time.
Andie
[ 05. June 2007, 11:05 PM: Message edited by: Andie333 ]
Posts: 2549 | From never never land | Registered: May 2005
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I just read a pack of very sad stories. It seems stress is extremely bad for Lyme patients. Stress is my middle name. I don't know how I can eliminate my stress without leaving my husband, shipping my Mom off to one of my brothers after I've had her for 16 yrs. I'd have to declare banrupcty, my business is already failing, I have an insurance agency.
I've had Lyme for 19 yrs., with no treatment. I knew I had Lyme because I had all the classic symptoms.
Labs were always negative, but my first blood test wasn't until 2 years after the bite.
Fast forward 19 yrs. I have so many auto immune diseases I've lost count. I knew I had Lyme, there was never a question. But I could not convince any doctor.
I finally found a LLMD. I've only seen him 2x so far. I will be starting IV abx next week. I fear herxing.
I work from home, and can barely work. Can you get disabiltiy if you are self employed? Duh, I just answered my own question. I've paid into it, so yes I can get it. But will they give it to me? Who knows. I haven't even tried yet.
Right now I want to focus on the beginning of my meds. As Scarlett O'Hara would say "I'll worry about that tomorrow". Financially, I continue to sink. Health to all of us.
Trina
-------------------- Nineteen years without treatment. Cranky and miserable, but ready to start IV antibiotic therapy. Please pray for me, as I am very sick. Posts: 15 | From Boothwyn, Delaware Co. PA | Registered: Mar 2006
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posted
I have been on disability for 3 1/2 years. I am a speech language pathologist. I was working with adult stroke patients in a rehab hospital when I became acutely ill - full blown neuro lyme, almost died etc. I have private LT disability through my old job -the cut me off after 6 months based on a neuropsych report stating that I didn't have Lyme disease and I was, basically, nuts. Also, any cognitive problems were reportedly due to my naturally low IQ! I got a good attorney, and my LT disability was reinstated. I still am getting it, but the disability co. may try to cut it off at any time. Right now, getting well is my full time job. I do everything in my power(and wallet!) to get better. As soon as my energy is consistent enough, I will go back to work.
-------------------- "We must be willing to get rid of the life we've planned, so as to have the life that is waiting for us" - e.m. forster Posts: 921 | From PA | Registered: Jan 2004
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quote:Originally posted by AP: I was in the Seychelle Islands, and I believe it attached itself while I was checking the mooring lines, but it's not easy to tell exactly what happened. There are about a zillion ways a tick could have gotten to me at work, but all that matters is that I got it "while in service of the vessel."
wow!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
I was a college student when I got sick in 1994. For me it has been a long, slow decline, from being able to go to school part-time those first years, to now being fully bed-bound. I am not able to shower, dress, or get my food out of the fridge in my room. I am cared for by my parents. I have not been able to go to the doctor in 18 months.
This is despite 24 months of antibiotics, including all kinds of IV antibiotics, between 2002-2006.
I never saw a tick-bite, and despite positive tests, I am unsure whether the Lyme is the cause or the result of my illness, or both.
Bec
Posts: 21 | From NY | Registered: Nov 2005
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
I taught art for 12 years before my 2nd relapse really set me back and I had to stop working. I have had Lyme since 1991 but was only treated for 2 weeks. It took many years and possible reinfection for the lyme to gain the upper hand, but since it has, it has a very tight hold.
Most of those years I taught elementary art. For the last 4 of them I cut my hours 25% because I just could NOT keep up. Originally this cut in hours was for me to pursue my own artistic career as I was being represented in two galleries. But it soon was eaten by doc appointments and debilitating symptoms. I withdrew from the galleries as i couldnt keep producing. (clay and mixed media sculptures)
I am currently suing my private non-ERISA LTD company because they denied my claim. I have LD and severe pelvic pain related to endometriosis and adhesions. I have had 4 surgeries since june and been hospitalised for complications 3 times now.
My current relapse began in 2004 and has been treated with orals only for 14 months with no ground gained.
I am more than lucky to have a loving partner who has been working so hard to help keep us afloat. She has sacrificed much of her own career as a professor and computer scientist in order to seek treatment for me and to nurse me. We are very thankful that domestic partnership has NOT been refused in all states. I can not imagine how we would manage without it.
I now teach one art class in a charter school a week. I used to teach 28 classes a week. I no longer create much, but when I do it is extremely satisfying.
I am very saddened by the stories here and give lots of hugs to everyone. Posts: 1950 | From New Mexico | Registered: Sep 2001
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david1097
Frequent Contributor (1K+ posts)
Member # 3662
posted
Disabled for 5 years now. I Still can work part time from home. Travel for work has been out of the question.
Posts: 1184 | From north america | Registered: Feb 2003
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i'm not sure when i got lyme, probably about 20 or so years ago. i started declining at work, taking more and more sick leave.
finally after 30 odd years with the government, i retired because of the abusive behavior of co-workers who didn't think i was ill. they pushed me over the edge.
thank God i made it to retirement and did not have to take a disability. i left two days after i was eligible.
i really hate, HATE doctors and people who are so cruel and don't understand. I wouldn't cross the street to save them from drowning but now i don't have to suffer their comments and abusiveness any longer.
i have enough just making it from day to day. symptoms are getting worse.
oh yeah, i was a lan administrator, office manager.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
I have been disabled for the past year...was sick a long time before....I owned a specialty cake shop when I first started to really feel the effects but of course had no clue...anyway I was back in school with a 3.8 working in security for the college I was attending when it all came crashing down..needless to say I can no longer think clearly enough to attend classes...even on line....And I don't see anything changing any time soon
-------------------- Hugz, Tugz and Health to you! Greg/bubbear http://centralfloridaresearch.com Treasure the love you receive above all. It will survive long after your good health has vanished.Og Mandino Posts: 109 | From Central Florida | Registered: Mar 2006
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posted
I got sick April 16th 1986. I went from being very healthy and active, to totally disabled. I had 3 small children and was working part time at a bank. I was bed-ridden the first several years and am now in a wheelchair.
I received Social Security disability in 1988. I didn't apply sooner because I kept thinking that at some point I would get better. At one point I was so sick, I thought I must have died and gone to hell. I never imagined it was possible for anyone to get this sick and survive.
I didn't find out until spring of 2005 that I had Lyme.
I am not the only one that having Lyme has affected. It has affected my whole family. My kids have never known me any other way except really sick. My poor husband has had to carry more then his load.
Kathy
-------------------- You never know how strong you are until being strong is the only choice you have. Posts: 807 | From South Dakota | Registered: Jul 2005
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posted
I just had to go on SS Disability a few months ago. Had to "retire" from my job after 13 years at the young age of 48. I thought I would be working until I was 80. I was a Municipal Tax Collector in New Jersey and loved it. Had great friends and great benefits and my office was only 2 minutes from my house. I could not have asked for a better life. But there was something different in store for me. I was diagnosed with MS 20+ years ago, but really was physically doing fine with it. Then started to get sick 4 years ago and on a "fluke" was tested for Lyme. PCR - blood test came up positive first time (along with several other tests) IV rocephin did not really help. oral abx....well, it seems to have become allergic to all of them lately. I struggle daily with this new reality of my life. How did this happen and where did the person I once knew go to? I hardly recognize my face in the mirror anymore. I agree that sometimes I cannot believe I have not died yet. It is hard to believe a person can be this sick and actually survive. Some days it is just so completely overwhelming.
-------------------- Corinne Posts: 529 | From Raleigh, NC | Registered: Jun 2006
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
I continued working through the past two years of treatment for late stage lyme and babesia WA-1, up until last November.
If you can call that working.
I was a legal assistant in a criminal defense trial firm. I have done nothing else my entire working life of 30 years -- good golly.
Other than to have a baby and return after maternity leave, I have never been off of work in my life.
I am on temporary disability currently. I plan to apply for SSDI shortly (my doctor actually suggested this). However, I am already planning my return to a career of a different kind, reinventing myself around something I still CAN do well (wedding photography). This is something I have done in the past, only not as a primary income.
I have high hopes!
I pray for those of you with an arthritic-type manifestation of lyme and am thankful to have been spared that.
I believe the Universe pointed me in this direction -- actually shoved me is more like it -- as I never would have left my little net of security otherwise (same job 14 years).
Every day is a little bit better.
The days that aren't, I fortunately forget really quickly, so that it surprises me when they return!
I keep the vision right in front of me, talk about it, do some little thing every day to make it so. I might be disabled, but also am somehow strangely enabled by the whole experience. I will get better.
You are all very brave.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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Cobweb
Unregistered
posted
Duh- I jumped to page two and thought I would toss in my experience, but then went back to page one to read others' experiences- and there I was-already posted. So yes, I have some real memory/cognitive issues.I seem to spend most of my time thinking about what I intend to do , but then get stuck in the thinking process and don't follow through.
A mind is a terrible thing to waste- and I think Lyme is wasting my brain.I don't want to be a spectator to this , but I am having increasing difficulties being proactive.
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
I *was* completely disabled from Lyme and was bedbound and could no longer walk or drive or care for myself or child.
9 months of IV Rocephin gave me life again.
I went back to work full time and got in the best shape of my life, had another baby and am very grateful for what I have today- the ability to type this, to walk, to think clearly- and best of all, only a flashpoint twinge of pain in my left knee for less than a minute a month- no PAIN other than that- god the pain sucked-
I was never a halljelujah person before IV Rocephin but now- AMEN for IV! THANK GOODNESS FOR LLMDS!!!
-------------------- 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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posted
I was working at a local convenience store until June 2006... I had been there almost 2 yrs and loved it.
Though, I have had, what I now know to be, symptoms of Lyme for about 10 yrs now, they did not start really interfering with my life until the last couple of years...
I finally had to leave my job and go on the company's disability, after suffering a severe dizzy spell at work, alone, at 9:30 at nite.
I ended up leaving work in an ambulance that nite and being taken to the ER, after which, I was advised by my PCP not to work alone...just in case.
After letting me work days, while someone was there with me, for about 2 1/2 months, my manager suddenly decided he could no longer "accomodate me"..
My company disability has now run out and I have applied for SSI (do not have enough credits for SSD) and have been denied once already.
I am now working with a SSI/SSD attorney and have filed an appeal.
I was just offered a job by my b/f's boss, working where he works, but I had to turn it down. As much as I WANT to work, my cognitive functions would not allow it...and I know it.
I am having terrible feelings of quilt over placing this enormous burden on my b/f, but this illness has totally messed up my life...
I hope this appeal leads to an approval, because our financial situation just keeps looking bleaker and bleaker... Posts: 50 | From Port Crane, NY | Registered: Apr 2007
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posted
Never could work full time because of horrible fatigue.
Due to this I can not get SSD as I do not have enough work credits. I do get SSI.
Used to think when I was in my 20's that I would find out what was wrong and be able to work.
When the 30's rolled around I still had hope of this.
When I was 40 my husband of 23 years left me. I still thought one day I would be able to work and live a normal life like others.
50's I relize now I will probably never be able to work. Have lost all my dreams for life I had when I was young. Just go day by day but will not give up. Just hope one day I will be well enough to do work volunter to help all the homeless dogs of the world.
Have been sick since I was in my early 20's and am now 58.
posted
Wow, as I'm reading all of your stories with tears in my eye's I so relize I'm not alone.I was diagnosed with M.S.in 91 and years later I found out the culprit was Lyme, fast forward to today SSDI since 92. On a good day I can walk in house with a walker and I dont drive anymore since a fender bender a few years ago was a wake up call to give that up.
I'm not realy a relegous person but each and every one of you will be in my prayer's "healing energy" to all,Terri
Posts: 203 | From tipp city oh.45371 | Registered: Jul 2003
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Have been disabled from lyme on & off for 20 years. Treatment has helped alot along the way. But it has taken a heavy toll in my life .
Got lyme right out of college. So I feel robbed as well as many people here do too. Like it stole, some of what should have been my best years.
I try not to dwell on the things I have lost & or can no longer do. On my bad days I do tend to wallow. can't help it. But do try like heck to think positive.
Trying to focus on what I can still do helps alot. If it's a good lyme day this is easier to do.
Things have a funny way of working out though, I would not have my present lovely hubby if it where not for the lyme. Also I have learned to slow down & appreciate the small things in life...
So lots of suffering & loss's but also some gains. Depends on the day
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
I posted on this tread last December. My life has changed significantly since then.
I'm now back at work full-time as a writer for a national company. In addition, I've managed to begin rebuilding a life outside my work and have even gotten to the point I can actually walk a mile.
I've returned to some long-set-aside things like writing creatively and writing music.
I'm still only at about 80% of capacity, but that 80% is a huge improvement over my health when I first started treatment two years ago. At that point, I considered myself at about 18%.
I'm so grateful for my recovery to this point, to my LLMD, my partner and friends. I don't take a minute of my life for granted.
I think everyone who has to deal with this horrible horrible disease is so incredibly brave!!!
Andie
[ 17. July 2007, 10:38 PM: Message edited by: Andie333 ]
Posts: 2549 | From never never land | Registered: May 2005
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ByronSBell 2007
Unregistered
posted
Andie333, you remind me of my friend Andy and his football number was 33, he was basically my big brother and he is always pep talking me through my illness since we played football together... thought it was kinda funny to see your screen name
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bettyg
Unregistered
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: 1032 | 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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n rn and i own 2 drive thru espresso shops,worked at those too. started getting ssi retoactive from date of diagnosis 4-06. don't think i'll ever be able to work as an rn again. no energy, unable to concentrate, terrible facial pain, brain pressure,left sided neuropathy
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