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» LymeNet Flash » Questions and Discussion » Medical Questions » What do lymies do?

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Author Topic: What do lymies do?
jwenny
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Just curious if you all take time off from work, on disability or just struggle to make to work.

For me, I struggle each day to work, barely functional...

Posts: 187 | From Gaithersburg, Maryland | Registered: Feb 2006  |  IP: Logged | Report this post to a Moderator
Andie333
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Jwenny,

This is a timely topic for me and one I've struggled with since getting very sick in Feb 2005.

I am self-employed, so that's given me some flexibility, in terms of work and scheduling. I was already starting to pare down my business, just because I couldn't physically handle it.

Then, as I got sicker, I cut back even more. But I did keep doing something (I found just working gave me such a boost and took me out of myself and the narrow scope of this disease).

I had started getting better a few months ago, when I was socked with a dx of Bart and had to add a second antibiotic.
Now, I'm starting to feel a bit better once again.

So I've started looking around at ways I can increase my work and my income.

Several people in my family have tried to encourage me to apply for disability, but, so far, this just isn't something I've wanted to do. The task sounds very overwhelming, and I'd rather expend the energy working.

Just my thoughts.

Andie

Posts: 2548 | From never never land | Registered: May 2005  |  IP: Logged | Report this post to a Moderator
Lymetoo
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I had to quit teaching 12 yrs ago, but didn't find out I had lyme until nearly 6 yrs ago. Fortunately [??] I didn't have to get up and go to work while going thru treatment.

I've been self-employed for the past 12 yrs.

--------------------
--Lymetutu--
Opinions, not medical advice!

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5dana8
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I have had to give up classical oil painting

for which I had done and worked for all my life.

But when one window closes aonother one can open.

When I am not tired I am working now in clay.

Sometiomes we don't have to give up our dreams -
just trade them in for new ones [Smile]

--------------------
5dana8

Posts: 4432 | From some where over the rainbow | Registered: Sep 2005  |  IP: Logged | Report this post to a Moderator
cantgiveupyet
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I tried going back to work and just couldnt do it. Walking into work with my laptop took everything out of me.

Im on short term disability with time running out....im waiting for them to axe me which im sure will be coming soon.

Im thankful that i can stay home and rest, ive noticed i have more better days now that i am home then i did when i worked.

I wish i could work.....but sadly at this time I cant, i tried and i cant.

It has been an eyeopening experience and im looking into other career options once i do get my health back.

--------------------
"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  |  IP: Logged | Report this post to a Moderator
mbroderick
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I'm a high school teacher currently working daily. By the end of the day I'm ready to collapse and often 'go blank' in the middle of teaching! The students have been pretty understanding but there sure are lots of days that it's a real struggle to get through all my classes. The insurance that my family has (all of us have Lyme) is through me so................I'll just be using up all my sick days and personal days this year!!
Posts: 2097 | From PA | Registered: Jan 2004  |  IP: Logged | Report this post to a Moderator
Elizabeth in MN
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I worked until I was forced to work part time (I took part-time disability). Big mistake. Should have just taken full time disability right away.

After nine months of killing myself, I finally took full-time disability (through the private insurance I had through work).

It is a hassle, but if you think of applying for disability (private or SSDI) as a part-time job, it's not so bad. We're struggling a bit, financially, since I carried the insurance and now we pay for our own. But I am so much better for not overextending myself. Hard to believe I sick I made myself by working so long.

There's no way I could be doing my job now, or any job. I don't know how some of you do it!
[Smile]
Warmly,
Elizabeth

--------------------
Life is uncertain. Eat dessert first.
Come visit my blog! http://forcesofnature.wordpress.com/

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mlkeen
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Struggle trough. I'm self-employed so I was able to take a lighter load.
Posts: 1572 | From Pa | Registered: Jun 2001  |  IP: Logged | Report this post to a Moderator
bettyg
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I worked from age 19 to age 49, 30 yrs. 6 months!

I got mono/lyme at age 21 & workd fultime but took sick leave galore for te mountain o health prblems I have.

Also worked during 2 immediately family deaths. When I left work my only sister, 40, was dying of breast cancer in the next 8 months. Couldn't go thru again, so I left work with NO BENEFITS are working over 30 yrs.

Falling asleep again; leaving for the afternoon.

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pattilynn
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I work 3 days a week. It's tough but I have been able to do it. I don't really have a choice.

It's even harder since I started treatment because now I can't sleep.

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AZURE WISH
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I was either in school or working from the time I was 12.....

(I have had lyme since age 10)

In 2000 (age 23)... I was just to sick....
I really tried but I just cant work now...

I have been disabled since 2000.

Can't wait till I am well enough to go back to work.

--------------------
multiple chemical sensitvity group:
http://www.lymefriends.com/group/multiplechemicalsensitivities

Group for artists. All media welcome:
http://www.lymefriends.com/group/creativecorner


http://groups.yahoo.com/group/Lyme_Artist

Posts: 3860 | From nj,usa | Registered: Mar 2001  |  IP: Logged | Report this post to a Moderator
erpatti
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I have been out of work x 3 months , have 3 more of sick time . Hope I can do it I am a nurse in the ER. Right now i am happy to be able to walk , still have tingling , numbness, eye pain and fatigue. All my tests are neg. calling it fibromyalgia, I'll never get disability
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klutzo
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I collapsed at work and had to be carried off to the hospital....could not walk for the first two weeks.
I've been on disability for twenty years now, even though I was misdiagnosed with FMS for the first 17 yrs. I was one of the very first people in the U.S. to win disability for fibromyalgia, in the first year it was ever granted for FMS, 1986.
I tried to go back to work twice, and collapsed on the morning of the third day, both times. I gave up after that.
My husband is self-employed, and I run his small business from home. That's all I can handle now, and sometimes the brain fog is so bad I have trouble with that too.
Klutzo

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bettyg
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quote:
Originally posted by erpatti:
I have been out of work x 3 months , have 3 more of sick time . Hope I can do it I am a nurse in the ER. Right now i am happy to be able to walk , still have tingling , numbness, eye pain and fatigue.

All my tests are neg. calling it fibromyalgia, I'll never get disability

Patti,
YES, you can be approved for SSDI, disability,as long as you have the correct paperwork to submit to DDS folks! You've got to BELIEVE you can win or you are defeated BEFORE you start.

I read you're off 3 more months. I'm going to copy/paste info here for you/OTHERS considering applying for SSDI.

%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%%

IF YOU ARE TRYING TO GET SS DISABILITY INSURANCE BENEFITS

Hi! I know what you mean about memory & typing, etc....it's the pits!

I do suggest you join the FREE DISINISSUES and read thoroughly or just print it all off of the FEMALE MD with chronic fatigue, etc. she gives wonderful, detailed examples that DDS, disability reps, want to approve/deny you.

Also have you looked thru the ADULT APPROVED LIST OF IMPAIRMENTS? That's critical also!

http://www.ssa.gov/disability/professionals/bluebook/1.00-Musculoskeletal-Adult.htm

note 1.04; look at the rest of the 14 other specific areas too....

I printed off 1-14 sections showing what brief guidelines were for each section.
I used that against ALL my medical reocrds, 3" thick!! Then I went to their DETAILED specifics for the sections that applied to my illnesses!

TIMECONSUMING....TOOK ALL 7 WEEKS from my notice of my ALJ hearing date!

So you have NOT submitted your INITIAL APP TO SS OFFICE, correct? Good, you want this to be as complete as possible so they can NOT turn you down on the 1st step as they do us all!!

\=============================================
What I did with an online friend was this: prepared a chart noting the specific
section of 1 - 14 that my diagnosed illnesses showed the wording, dr. seen & date.

Example, 14.09 LYME disease is mentioned in but doesn't give any examples. So I showed 14.09 with my drs. name & date plus specific details about each visit where lyme symptoms were stated..

I hope you have a copy of ALL MEDICAL REPORTS...drs., xrays, all blood labs.


It's critical that you KEEP A COPY FOR YOURSELF!
==========================================

On mine, I showed the date mailed to ALJ & LAWYER PLUS I kept a copy.
Then I went to copy center nearby & copied and mailed promptly to lawyer per his request.

WHY THIS IS IMPORTANT: if you have an ALJ hearing, request thru your local SS office to REVIEW your complete SSDI app at THEIR local office! When you see things you submitted with your writing on, don't look at them!

Look & read only the secretative RFC & MFC done by the the in-staff DDS DRS/PSYCHOOGISTS! You want to make copies of ALL the stuff they have &
other stuff you don't have so you can use that info against them!

good lawyer list from disinissues
http://www.cfids-me.org/disinissues/lawyers.html

RFC link is: http://pbcers.org/rfcq.htm

ACTIVITY DAILY LOG, ADL link is:
http://f4.grp.yahoofs.com/v1/oHfvQzZLYvcfvmUv
V4L_ayW4_l5PFECbH9UA2BR_YfE66JZ0ZSxttbcO7NZqu
HpjUfnUxG9wWuH7WPXAzrR7YqCnrsO80V5hSxJwduQ/
Activities%20of%20Daily%20Living%20questionnaire

At moment, can NOT find MFC questionnaire, but look at site on links/files. It is there but not visible to my eyes presently.


NOTE: I'D DO THIS DIFFERENTLY NOW! SEND

1 COPY TO ALJ and 1 to your lawyer! Lawyer did NOT SEND MY REPORTS TO DDS STAFF PROMPTLY; they didn't see many things when they denied me although I had good medical info!

Examples, 2 RFC, residual function capacity done by PCP dr. of 26 yrs. & rheumatologist;

plus 2 MFC, mental function capacity, done by psychiatrist & psychologist....
the 1st person was the one judge used in APPROVING my 2nd claim for severe depression/effective disorder & anxiety.

ALJ's don't like working with LYME, FIBRO, CHRONIC FATIGUE.
MENTAL is on approved list of adult approved impairment list! So don't fight it, go with it!

==================================================
IF YOU ARE TRYING TO GET SS DISABILITY INSURANCE BENEFITS
==================================================This message is sent upon subscription, and again monthly. Please let the moderators know if any of the links have changed.

There are several links found by clicking on 'Links' on the website or by going directly to
http://groups.yahoo.com/group/Disinissues/links


There are many more links, as well as advice, in the "useful" messages in the Files area of the website. Go to

http://groups.yahoo.com/group/Disinissues
and click on Files.

BETTY NOTE: Look at the female MD's DETAILED BACKGROUND right below this paragraph. Print off her detailed responses as to why she could no longer work.

http://www.cfids-me.org/socsec.html

These links are a compilation of several areas of interest which are commonly requested and mentioned. They reflect the collected wisdom
of this group. Check them out - you just might find the information you were looking for! Take a look at Files that are not specific to
your situation, because they might be helpful anyway - what works for Social Security may work for LTD claims, what applies to CFS may apply
to your medical condition.

The Welcome Message and Group Guidelines are also in Files, if you need a refresher on how this group works.

You must register with Yahoo to use the website, but note:
Be careful not to permit your address to be put into the directory when you register. Put as little as possible into your public profile.
You do not need a Yahoo address to use the website. Your email address is what Yahoo calls your "alternate address." Contact the moderators at [email protected]
or for AOL subscribers:
Click here
-----------------------------------------~-->
Disinissues website -
http://groups.yahoo.com/group/Disinissues

To reach the list moderators, write to:
[email protected]

DO NOT FORWARD ANY MESSAGE FROM Disinissues
WITHOUT PRIOR WRITTEN PERMISSION FROM THE AUTHOR
Do not distribute any member's email address.

NO MESSAGE ON THIS LIST IS TO BE CONSTRUED AS LEGAL ADVICE
--------------------------------------------~->
Yahoo! Groups Links
To visit your group on the web, go to:
http://groups.yahoo.com/group/Disinissues/
To unsubscribe from this group, send an email to:
[email protected]
Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
An online friend of mine from disinissues web site posted this info today, so I have copied it over here.

Subject: fibro/CFS disability info [Disinissues] what does an Functional Capacity Exam entail?

Lyme, fibro, & CFS support group members who are/will be filing for SS Disability insurance benefits, please go to the web page shown below.

There were 9 pages of info I printed below area where you can order from fibro network a 70 page packet. I too plan on including this info when I send my FINAL packet of info to chief alj before my June 16, 05 hearing...my last
chance! =======================================

Please read the site mentioned on: WHY DISABILITY TESTING FOR FMS IS OFTEN MISLEADING ADVICE FOR FM/CFS PATIENTS AND THEIR
DISABILITY TEAM.....

Also after this article are the following articles:

WHAT COULD BE CAUSING DELAYED-PHASE FLARES?

BENNETT'S METHOD FOR ASSESSING FUNCTION IN FMS..

TECTONIC CHANGES IN DISABILITY LAW by lawyer Joshua Potter,
CALIF.

MEDICALLY DETERMINABLE IMPAIRMENT REQUIREMENTS FOR CFS & FMS

DOCUMENTIONATION...VIEW IT AS AN INSURANCE POLICY

I printed this out in larger print for my eyes....9 pages! Will read it thoroughly

and mark up 2nd copy to go to ALJudge for my 2nd hearing as medical evidence also.

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Carol in PA
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erpatti:

Hi! I'm so glad to see that you found your way over here from the other health board.

Read as much as you can, I've learned so much from the others at LymeNet.

Best,
Carol

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SForsgren
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Each person is different. I struggled through working for years, but never stopped working. That said, if I had the option, the healing process may be better without the extra stress... Be well.

--------------------
Be well,
Scott

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Aniek
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Remember that we all have different symptoms, different extremes, different bodies, etc.

I consider myself a lucky one. I had lyme 17 years before I was diagnosed. In those 17 years I graduated junior high, high school, college, started working, got a masters, worked again and applied to law school. I found out I had lyme 2 hours after I sent in my law school application. Now I work full time and I go to school at night.

I personally do better under stress. The worst time for me health wise was when I was searching for a diagnosis when things were at their worst, about 3 years ago. I was working, and would then go home and spend the evening and weekends on my couch watching tv because I hurt so much.

I'm doing much better now that I have absolutely no time to rest. Because I don't have time to think about being sick. When I'm busy then my brain just notes that I'm in pain and files it away somewhere.

I'm also lucky because I don't have cognitive symptoms. I've had pain so long that my brain knows how to deal with it. I also have no family to take care of.

I pay somebody to clean my apt and I'm starting to pay a service to do my laundry. Honestly, that's the hard stuff for me.

--------------------
"When there is pain, there are no words." - Toni Morrison

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Michelle M
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I have worked throughout illness and ongoing treatment.

This is due not to any particular strength of character but out of sheer necessity.

Work means income, food, house, support for my child and I, and insurance.

I live alone, except for my daughter. She has Lyme, too.

I'm not really convinced I'd be better sooner at home and financially, for me at least, the other options look mighty grim.

I also am fortunate to have an understanding job. I've been there forever, and they seriously "work around" my bad Lyme brain days and do not want me to leave, in spite of my sometimes less-than-stellar performance.

When my boss asks me to do something now, he pushes a legal pad and a pen at me and has me write it down right then and there because he knows I'll forget it before I get to the bottom of the stairs.

[dizzy]

Michelle

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Getting Better
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Some of us did / do not have a choice about working. We are too sick to work. If I had my choice, I would have kept working. I had to take major pain meds and provigil to get through work until disability was approved. I think I damaged myself more during that year because I did not let my immune system rest. My LLMD ordered me not to work. But then again, I had a very high stress administrative job. I think a low stress job would be ok. But I could not even do that right now. This illness will be different in everyone, but my experience is that it has been catastrophic for me.

--------------------
Jeff

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ChrisBtheLymie
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I can't do anything, the fatiuge, pains, dizziness is too much. I can barely leave the house.
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BostonLyme2005
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I have been working steadily, have taken some sick days, vaca days, personal days...

I have a great job, within a great company, lots of benies, lots of time off, lots of understanding, a caring and supportive union as well....

I am thinking of taking some time off, help my bones rest for a few months...

There are many days when I can barley walk, read, too tired to do so, try to hide in a private bathroom for awhile....

All the symptoms are there....

Thanks,

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Elizabeth in MN
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I really envy those of you who still can work. I know some of you say you must work, but the fact that you still can is wonderful. Even if I did not have disability insurance, I would not be able to hold down any job.

For me, it isn't just the exhaustion and pain, but the cognitive impairment. My last Neuropsych test showed that my short-term memory scored in the 5-35% range. Awful, especially when my normal range used to be 95-98%.

I finally had no choice but to stop working when I could not remember instructions my boss gave me long enough to walk to my desk and write them down.

I was a technical writer and trainer, and a project manager in IT, and was no longer able to even grasp the problems I was trying to solve, much less remember the language I needed to use. I was not able to remember how to use my high-end software, either.

I was simply no longer qualified to do my job. Makes me sad, because I really loved that work.

--------------------
Life is uncertain. Eat dessert first.
Come visit my blog! http://forcesofnature.wordpress.com/

Posts: 126 | From Minnesota | Registered: Dec 2005  |  IP: Logged | Report this post to a Moderator
   

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