LymeNet Flash: How many of you are still able to work?

This is topic How many of you are still able to work? in forum General Support at LymeNet Flash.

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Posted by Lynette (Member # 5993) on :

How many of you are still able to work throughout your therapy?

Do you consider yourself a mild, moderate or severe case of LD?

How many of you have multiple family members with LD?

What do you do for finances?

Posted by amyb (Member # 5520) on :

i work at least 40 hrs a week....i have to... i have no insurance and never any money since all of this so i am working to stay alive i guess.

thankfully i am able to drag myself out of bed most days...although some days i just sit here at work in a daze..

i guess i am mild to moderate depends on the day...

i just can not wait to see a light at the end of the tunnel..that would be the best

amyb

Posted by lookin4answers (Member # 4974) on :

Well, right now I am working 32-40 hours weekly. Was working 35-45 need to cut back to "manage" my life with my girls while hubby is over seas. (managing poorly I think)
I would say I am mild as of now, but am thinking that could change, have not even hit 4th week on abx.

Yes, my mom was diagnosed about 3yrs ago and still on therapy.
My 7yr old and 13mth old and myself have LD. Have not checked for co-infections yet.
I am having my husband tested when he comes home from Iraq. Very probable he has it. Also we WILL use protection (do not like that, but will) until we feel like we will not be spreading it back and forth.

Oh, did I say hello and welcome to lymenet.....where are my manners?

~Amanda

Posted by TheCrimeOfLyme (Member # 4019) on :

I had to take four months off in the beginning of treatment. I had pretty bad rough neuro symptoms.

Ive been back to work for a year though. I hvae to work, lest my kids dont eat.

Dont feel guilty if you cant. Some psycho on here once said I mustn' be that sick if I am working.

Posted by slcd (Member # 5708) on :

I still work 40 hours most weeks (occassionally I just can't get out of bed). According to my doctor I'm moderate to severe. I guess I just do it because 1) I feel like I have to for the money and 2) It makes me feel less disabled then staying home would.

[This message has been edited by slcd (edited 05 August 2004).]

Posted by Aniek (Member # 5374) on :

I'm working full-time and starting night school in a few weeks. I don't have family to take care of though, so that's one less full-time job than all the parents on this board.

I would consider my Lyme very mild, but I have moderate to severe reactive arthritis. It's hard to sort out what symptoms are what, but the more I read about the reactive arthritis, the more my story makes sense.

The only reason I can work is pain management and physical therapy. At one point my hand pain was so bad I couldn't even read a newspaper.

[This message has been edited by Aniek (edited 05 August 2004).]

Posted by rambleguy (Member # 5389) on :

I have been working full time since last November, but I was lucky enough to find a a low-intensity county job (8-4:30 m-f, no late hours or weekends). Even so I've had a great many very difficult days, as I have had the bad headaches for a full year now (getting much better though) and my eyes are ALL screwed up (hurt all the time, sensitive to light, floaters).

Even though I feel like death many mornings, I am still glad that I have the job, because it keeps me rooted in the real world and my mind off of the illness. Otherwise I would go stir crazy, not to mention broke, hungry and homeless (and unable to afford anti-biotics).

Posted by Stella (Member # 3119) on :

I couldn't work or study or do much else at the beginning of my treatment. My case was VERY severe - on most days I just stayed home and hybernated.

I was lucky enough to respond positively to treatment and was able to go back to work - catheter and all - after 6 months on IV.

Worked approximately 50 hours a week for over a year. Did great on the job but decided to quit that job and look for something that would only require between 25 and 35 hours a week. I feel great now and have a life once more!

Posted by greg (Member # 1250) on :

I never really stopped working, just worked less, and therefor made less money and went into debt. I had to keep working to keep my bennies. I am a flight attendant, I just gave away trips when i felt like poop. No fly/ no money..bought groceries on the credit card sometimes.

I think my case was moderate. Heard of those better, and worse than me.

Im well now and working alot to pay off the med. debt.I live by myself, with no other lymies, and concider that a good thing, because I know it was hell enough on my own. I really pray for those of you in multi lymie households..

greg

Posted by cityzen (Member # 5317) on :

I never had to stop working although I had some days where I wished I could have crawled under a rock and died!

[This message has been edited by cityzen (edited 05 February 2005).]

Posted by rosesisland2000 (Member # 2001) on :

I worked many years not knowing that I had LD, but, I did have wierd symptoms along the way.

I think that working or not working depends not only upon what ones job is, but, in what stage of the disease the patient is and if the treatment was doing the patient well enough to work.

I am no longer working and am on SSD.

Many people here are on long-term disability whether with the government or their private disability insurance that they may either have personally or with their employer.

Several posters here are only working so as to have insurance. But, in reality, they many not should be working.

I know that through talking with my daughter, Lookin4answers, that she has said that this has at times interfered with her work.

Many employers don't have the wherewithal to allow a person the time off for the illness and tests and doctor's visits and expecially the herxes in between, and they let the person go or the person just quits.

Rosemary

Posted by rosesisland2000 (Member # 2001) on :

My daugher, her two little girls and me, all have Lyme Disease.

As far as finances, I was lucky that my late father provided substancially enough for my mother that she was able to pay for all my treatment and doctor's visits and tests for the past few years.

I am now on Social Security Disability and since I recently got married, we are now taking care of things the best we can.

I had surgery earlier this year and that has set us back and the PT afterward for 3.5 months will really hurt.

But, just be up front with your doctors and they will work with you as best that they can. But, they only can if they know your situation.

Hope that helps.

Rosemary

Posted by MADDOG (Member # 18) on :

Hi Gang,I work every day of the work week,I am an auto tech.I was told by profesional medical people to quit my job,because I will continue to be hurt on the job,and if i don't quit in one case I would die from the chems there.I worked all 3 months in which I was on IV rocephin,in the dirt and grease.I used to improve dramatically on oral abx but that ended recently.I got the direah so bad I lost 23 pounds in 3 weeks.Metamusil stoped the direah,and i went back on oral meds. but they are not the cure so i started Benzathine shots.I hurt so bad at work a lot of jobs intail rigging some sort of lever to break loose bolts ,lift something ect..I spend as much time some days rigging handicap tools as I spend working.I fall over on the floor sometimes,and hit my head on things under cars i don't see.I slide on the smallest puddle of oil and hurt myself.I still go to work ,it is a fix like taking drugs,I cant stop.I need to real bad but i am a workaholic.I will drop dead there some day. MADDOG

Posted by kam (Member # 3410) on :

I worked and went to college for years but kept having strange symptoms that I now believe were due to lyme disease.

I would have times when I needed to take off work sick, but usually not for long.

This went on from the mid 1980's until I came down really sick in Oct. 2001.

I continue to wonder if there isn't something else going on as others at work came down sick at the same time with the same bizarre symptoms.

One of the other co workers who has yet to return to work dropped by the other day to inform me that if we hadn't gotten sick, we would be taking home $4,000 a month net right now.

Instead I am living on SSI of $700 a month. Ouch. I wanted to shoot the messenger.

She is receiving workmen's comp so her lifestyle has not changed. She also is higher functioning than I am....traveling a lot right now.

She was dx with valley fever and then CFS/fibro and is refusing to see my LLMD because she will need to pay out of pocket.

Others were told it was heart, stress, diabetes complications, etc.

Since then, I haven't been able to work although I have tried to return to work 3 times.

I do believe I will be able to return to work. I just didn't believe it would take this long.

[This message has been edited by kam (edited 08 August 2004).]

Posted by RJPII (Member # 5876) on :

Lynette - Good idea for this thread topic.

I've had LD for approx. ten years. I have continued to work full time at an insurance analytical position, although it is more working with people then numbers. I have sporadic spells of time where my personality slips into a more shallow, nervous and cloudy profile. As with most folks, it is incredibly hard to find a productive path through the day when it is often extremely hard to make even the simplest of decisions. I am currently struggling at whether to/how to take that step to work at something less stressful/analytical. This is mostly due to a strong work ethic as well as fear of loosing good insurance. It's about time I step up the action to find a better source of income. Thankfully, my wife does make a good income which clearly gives a lot more breathing room. I just think that i won't resign to leaving work until I absolutely have to.

Have a great day everyone!(Thank God for days off!)
Bob

Posted by RJPII (Member # 5876) on :

quote:
Originally posted by cityzen:
[B]
.....My vacation is coming up soon and I was supposed to go backpacking but now I put that on hold indefinitely. I don't know if I'll be able to enjoy myself cause I'll be so paranoid about getting ticks on me. So I'm a bit depressed about that but happy that I'm feeling normal again.
B]

I apologize for changing topics for a moment....Cityzen: If you are still following this thread, I seem to be in a similar situation as you in many ways. One way is that I enjoy backpacking as well. I have been fortunate enough to have gone on many trips since coming down with LD.I just stick to trails at elevations of 1800 abv sea lvl. I have heard many rangers & folks say the risk is much less. Plus, when I do make it there, I kind of feel exulted from the depression.Feel free to email me at [email protected]

Now back to Lynette's thread...
Thanks

Posted by arg82 (Member # 161) on :

Well, I'm a student and I'm still able, most of the time, to stay in school. I have very understanding teachers and I work with the disability services coordinator to get accommodations to help me deal with the work and classes. I also had to take a semester off and I've had to take incompletes on classes almost every semester to finish them up over break.

I do also work very part-time - about 15 hours a week in the summer and only about 5 hours a week during the school year. Most of the time lately when I'm not working I'm in bed resting. I consider myself a moderate or borderline severe case.

--Annie

------------------
``The best way out is always through.'' -Robert Frost

Posted by rosesisland2000 (Member # 2001) on :

You know, I believe that age and "how long you've had LD" certainly come into play on whether a person can work or not.

Then the actual job that ones does. I certainly can not do accounting right now with my lyme brain...like that. I believe it depends on oh so many other factors.

Some work, some don't.

Rosemary

Posted by SC (Member # 5767) on :

My answer is for three of us.

#1
My husband, a moderate case, falls into the category of those who can not work.

He is/was an industrial electrician. Brain fog etc. and 480 volts of electricity do NOT go together!

Currently he is in the process of being fired from his job because he is not able to return at the end of his FMLA.

At this horribly stressful time he must try to figure out what he can do.

Not an easy task for someone having problems thinking clearly enough to make decisions!

#2
Other than the lack of income, I am very thankful that I am not employeed outside the home. I would say I am mild to moderate depending on the day.

My three young children are almost more than I am able to handle. I really do not know how the working mothers survive this disease. After being up all night with a crying baby I couldn't possibly survive a day at work.

What do we do for finances?
Currently we are living on the remainder of our savings and my husbands short term disability. After that????

#3
My mother is moderate to severe. She has worked the last 3 years in missery trying to hang on to her job and insurance.

She is about to start iv treatment and has been told that she will loose her job at that time.

If she had not worked so hard in the last few years we believe she would have recovered rather than gotten worse.

We know that all things are possible through Christ Jesus, and we know that somehow, some way we will make it through this!

We just keep praying and keep trusting our Lord to see us through. And he will!

sc

Posted by Mary J (Member # 4234) on :

I'm back to work the past 5 months after being off for 9. It ain't easy, let me tell ya ! Commute 50 mins each way, crawl into bed at the end of each day for about an hour or less if hubby has dinner on the table