posted
I had to stop working back in Nov. I'm supposed to go back to work in 3 weeks, but am in NO WAY ready to get back to work.
I'm currently on 500 mgs of zithro, 400 mgs of doxy and nystatin 3 x a day and I'm suppose to start flagyl today (but prob won't b/c of all the nightmare stories I heard about it).
All these abx make me feel sick, tired and my stomach is always upset. Every morning I feel like I'm hungover and sick. I detox and take good care of myself, but still feel sick most of the morning.
Does anyone still work while taking all these meds and feeling sick? If yes, then how do you do it? For those not working, how long have you not worked and when will you get back to work?
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
I have not worked for 7 months now.
I wanted to try working 4-6 hours on sundays at my old job, but they have no hours because it is slow.
I am not 100% by any means. I was looking at new jobs but there is no way. I need some money otherwise I would not have called my old boss.
My job is very physical though. I used to be a vet tech and we have to wrestle big dogs and run around like crazy. There is lots of lifting and you are on your feet the whole time.
You also need to have a clear mind because you need to calculate drug doses, and you can get bitten in the blink of an eye.
I am also pretty scared to work aroud a lot of ticks and fleas again. I cant deal with another bite, I know I wont make it.
I am filing for disability.
good Luck!
Melissa
Posts: 3905 | From USA | Registered: May 2007
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
I had to leave work in September 2001. At that point I had been ill for almost 40 years, if not longer.
I got my Lyme dx in April 2006. I am not average, but I know there are others here who have been ill and unable to work at least this long.
If your infection is newer than mine (I certainly hope so!) you will probably not need to be out of work as long as I have been.
There are many on here who continue to work, or have returned to work. I hope some of them will come along soon.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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Peacesoul
Unregistered
posted
I've been sick for 13 yrs and was dx with lupus but was dx with lyme last Aug. I worked through all the down time. But I got well from eating well and working out a lot. I still had bad days but was always able to work.
I stopped work and went in disability in Nov when I started abx. I knew I could not wake up at 5 AM daily and work 9 hrs a day while herxing and have major GI issues.
My job is not physical, but it's very demanding. I want to get back to work, but think I can only do it once I stop meds. I'm a tough cookie but I don't know HOW some people still work while on all these meds.
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posted
For the past two years my husband was off and on disability. In June he went back full time as disability was running out and he had the option of retiring at 33% of salary and pay COBRA or go back to work. Luckily he has an understanding boss and his job is not physically demanding. However, there are days where he barely makes it through the day and it makes me sad to seeeing him struggling so hard. One of the benefits though is that it has reduced his anxiety/sress about finances and the future.
I have been interning in a new career (my old job didn't have any benefits) in the hopes of taking over the financial burden soon so if he needs to he can retire.
Posts: 984 | From San Diego | Registered: Nov 2006
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posted
I have kept working through 5 years of treatment, including two rounds of rocephin, though I did work only from home through some of the second round as I was on 4 mg 7 days a week that time.
Having a desk job, a pretty supportive employer (I've been at my job for many years) and lots of pain meds is how I've managed it.
For me, the upside is keeping some semblance of a 'normal' life and income and some sense of being in control. But I worry more and more every day that the downside is too steep. I haven't gotten any better in all that time, and not working is one of the few things I haven't tried yet.
I wish I had the guts to stop working and focus on taking care of myself. It's just my opinion, but if you think it's right for you and you can stay out of work longer, I would.
monkeyshines
Posts: 343 | From Northern VA | Registered: Oct 2004
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Peacesoul
Unregistered
posted
Monekyshines. I was like you. I never wanted to stop working. I worked the entire time I was ill. Just before I started meds, I was not functioning very well. My nerves were shot. What finally made me realize I needed to take some time off was when I was driving to work and felt faint and actually blacked out for a little, and I was on a busy highway. That's when I knew it was time.
Giving myself a break was not an option, until then. So when I started meds in Nov, I finally asked my Dr for time off. It was a tough choice since I live alone and that's my only income. I do get disability pay, but it's not about the money but more about not losing my indepedence. If I could work from home, I would do it, but it's not possible.
I cannot even imagine having to get to work while on all these meds. I have to be "ON" at work and most days I can't even get off the couch.
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Peacesoul, I can't even image what I would of done the last 6 yrs without my husband's income and support. I worked at very stressful and demanding job and had finally got my promotions and was rewarded with my career dream title.
I lasted in that position for 6 months before my body said NO MORE. It had taken me 26 yrs of hard work to get this position in corporate America.
My mind, body and spirit was broken and I had finally come to my good senses and stopped working and decided to take care of me and my health.
Up until that point in my life, I took care of everyone else first. Number one on my list was the company. Not good.
I had 6 mths of short term disablity. I knew in three months that it was not in my best interest to return to work until I showed improvement. I was 2 1/2 yrs on different abx and sick as ever.
My husband for 2 years went many places without me. Just because I couldn't go, didn't mean he had to stay home after work to sit with me.
He took vacation days to take me to LLMD 6 times in 2 yrs. His father passed away when we had almost depleted our savings account and left just enough money to survive and pay bills until Social Security decided I was totally disabled.
I had paid out of my paycheck for long term disablity for many years prior to illness. They denied me twice and I hired lawyer to represent me and it was appealed by lawyer to a federal level something judge. Big name insurance company.
My long term disablity company was dishonest and fought nasty. Warning to anyone with long term disablity insurance. Beware!!!!!!
My lawyer was a pay if I won case. We lost, he didn't get paid and I was outwitted and outsmarted because I didn't have anyone help me fight these guys & this BIG insurnace Giant.
Social Sercurity was hardwork and I should never tried to take them on personally in the beginning without a lawyer. I was so mentally screwed up at the time, I had no business thinking I could handle two GIANTS.
Thank goodness SS isn't dishonest, just persistant & fair & tons of paperwork. SLOW too.
I can't believe I've been disabled by something as small as a deer tick (?). Being on SS and "retired" is not where I thought I would be at 50 yrs young (today) when I was so alive at 40 (so I thought then).
Peace, 1 yr after starting abx I was making progress, so it seemed. Everything changed the next year with abx???? I don't know why or how.
Peace and anyone else reading this thread about work & lyme & company. Have someone that can help you with SSDI paperwork and LTD insurance paperwork, if you must start the process.
Finally, learn to take care of you and your health. It's priceless.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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Peacesoul
Unregistered
posted
Hi Pam, It is very hard to walk away from a job you worked so hard for, but I think you made the right choice. My friend had leukemia and wanted to get back to work and her family thought she was nuts. She never went back and her disability finally ran out, so she went back to school and is now 1 yr away from being a PHD in cancer research for leukemia. Sometimes MUCH good comes out of life change.
In my case, I can't not work b/c I'm sure I won't be able to get disabiltiy payments after 6 months. I live alone and would have no way to support myself. I don't mind working since at least my mind will be on work and not ME all day, but my fear is going back too soon and not healing properly.
I'm not sure if it's smart/brave or stupid to go back. I'm so torn because I need to heal but being in daily feeling ill rots my brain. If I can just win the lottery this would be SO MUCH easier....haha!
cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
Pam- Just sent you a PM, im dealing with the LTD giant now, and am having a real rough go of it...just coping with it all.
Jen- I am not working, my company forced me back off of short term disability in 2005, at the height of our busy season....I sat wrapped in a blanket all day freezing, i had just started doxy and was herxing, felt hungover and could barely walk. I was frail, my clothes didnt fit... I was still expected to do ALL of my work.
My dad drove me everyday, we had to stop at many stores on the way to work so i could pee....I was in terrible pain.
HR had me working against dr orders after I got documentation that they requested from my LLMD.
After making an abx change , and herxing even more , I almost passed out while urinating in the bathroom at work. I was so scared. I immediately told my boss I was going home.
For two weeks after I was in burning bladder pain, so horrific i thought i was dying. I got a call from HR saying if I didnt return I would have to resign. I forced myself to work. Finally they put me back out on disability.
I would never do it ever again. I pushed my body way beyond what I should have, but like Pam I put the company I worked for first and me second, thats just what I did. I would drop my life for my friends, now I am first.
Are you able to get long term disability from your company? I second what Pam said get a lawyer form the start of your LTD claim, they pick everything apart and they can be very dishonest and just ruthless.
If you do go back,and you feel you cant do it, make sure you stick it out until they let you go, so you can collect unemployment. I had a coworker friend of mine push me everday , so i would hang in and not resign, he said they owed me...he was right.
-------------------- "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
My position at work was "Phased Out", it started when I had a heart attack at the ripe old age of 38, in nov. 2006. I was laid off Sept. 28,2007. Can't do anything about it.
So, I am using the time off to get better or file for disability.
-------------------- OK...I'll play your silly games.
Finding my happy place.
Brenda-Lee Posts: 126 | From Florida | Registered: Aug 2007
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posted
Ugh, these stories are partly why I haven't taken the disability path. I pay for short- and long-term disability (both thru my employer) but am worried that they'll put up a fight.
I always thought I had 'really good' benefits, but I'm already fighting my health insurance company for infusion therapy they decided not to cover, all or in part, after I had already had it (the fight over one set of charges has been going on for 2.5 years, and I've just been sent to collections as the infusion company is tired of being patient while the health giant jerks me around). It's exhausting and I don't know how much more of this kind of fight I can take on.
I'm also single and don't have any other source of income besides my job, and I've gone 10s of thousands of $ in debt in the last few years from medical bills. I'm about to take in a housemate and live with someone who's not my spouse for the first time in 28 years so that I can afford to pay my monthly bills and medical debts. I can't afford one week out of work!
My mom has suggested that if I do pursue disability, I should start out from the beginning with a disability lawyer (she's been nicely badgering me to stop working for more than a year now). Does getting a lawyer first make sense to any of you who have gone on disability, either short-or long-term?
Thanks for starting this thread, Peacesoul. It's something that's been weighing on me heavily, and it's really great to have this forum to talk about it.
monkeyshines
Posts: 343 | From Northern VA | Registered: Oct 2004
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Peacesoul
Unregistered
posted
Cantgiveup: I can get long term disability if i need to. My insurance co. through my work is good actually. They never question anything under 6 months but will question me if I need more than 6 months.
Here's the problem, I can't claim disability for Lyme. Here in Canada the Elisa test is the only test to prove it and of course mine was negative. I did Igenex and was cdc negative so I'm sure at that point the insurance will question me and my doc.
Since I was dx with Lupus back in April, my Rheum put on my disability forms that I'm off of work for lupus related issues. Once the 6 months would be up, I would have to go to the insurance co's dr's so they can check me out. That's when the headaches will start.
My co. would never force me back to work. I work for a very large co. and they have people doing my job for now. I'm sure they wouldn't be thrilled if I had to take 6 months off, but I'm pretty sure they wouldn't terminate me for fear of a lawsuit.
I fear pushing myself as well. And like you, I feel that hungover feeling all the time. This is why I want to stop abx after 3 months and try herbs.
Monkey: I feel your pain. I'm glad this thread is helping. It does help to know how others are coping with loss of job etc. Maybe you and I should live together..haha! I'm fortunate enough to live in Canada so my medical bills are minimal. My only cost was the LLMD I had to see in the US and my suppliments etc. I suspect once I get on herbs, I'll be freaking out on the cost.
I may ask my dr and my employer if I can come back part time to start.
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
quote:Originally posted by monkeyshines: My mom has suggested that if I do pursue disability, I should start out from the beginning with a disability lawyer (she's been nicely badgering me to stop working for more than a year now). Does getting a lawyer first make sense to any of you who have gone on disability, either short-or long-term
monkeyshines
Yes, please seek out a lawyer from the start, especially once you reach the LTD level. Most STD companies dont harass you like LTD does. I was approved immediately for LTD, but after a year, kicked off.
Looking back I would have hired a lawyer at the beginning of my LTD claim, so they could guide me in filling out the forms.
Here in the states most employer sponsered plans are governed by ERISA, so if you have an ERISA plan you need an ERISA lawyer. Im learning the hard way as my first attorney was mediocre and lost my appeal :-(
Also, i would read over the post at the top about disability and joind the dissinissue board on yahoo.
Peacesoul- I would just use the Lupus diagnosis, and focus on the symptoms and how they prevent you from doing your job. Im not familar with the laws in Canada, i didnt realize you were from Canada.
-------------------- "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
As of today I'm not working either. Thankfully mine is because I was able to make it through this last 1 1/2 years of lyme and now I am RETIRED. Now when I get exhausted I can rest and hopefully that will speed my recovery. I'm praying for all those not as fortunate and cannot work because of the lyme.
Leonard
Posts: 43 | From Pella, Iowa | Registered: Nov 2006
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Peacesoul
Unregistered
posted
quote:Originally posted by Leonard: As of today I'm not working either. Thankfully mine is because I was able to make it through this last 1 1/2 years of lyme and now I am RETIRED. Now when I get exhausted I can rest and hopefully that will speed my recovery. I'm praying for all those not as fortunate and cannot work because of the lyme.
Leonard
well congrats to you. How did u make it to work everyday sick? It's a tough one!
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
Last year around this time is when I started my new job, a career more fit for what I went to college for. And it was around that same time last year when I got very ill and, needless to say, I couldn't continue coming into work. I tried for a while, on and off, but it got to the point where I had to call in and tell them that it wasn't going to work.
Luckily, where I work is a place that mostly works with computers doing documents and such, so I had the wonderful opportunity to work at home, which I took, and which I'm very, very thankful for. Otherwise, I don't see how my husband and I would make it because he doesn't make enough alone to provide all we need.
I'd like to go back when I KNOW I'm 100% healthy again, but then there's always this fear that I'd get sick again (it would come back or never have left, etc.) and have to tell them all over AGAIN that I can't come in. I wouldn't want to have to do that again.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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posted
I don't know how anyone can do anything but the most simple forms of labor with this crap. I'm so tired and disorganized most of the time, I can barely keep my car or bedroom clean, or manage a checking account. During periods of remission or feeling better I have been able to do somewhat more, but inevitably stressors have reignited the illness and I fall apart again. Most of my problems are brain though, maybe some of you have different forms.
Posts: 523 | From Stillwater,OK,USA | Registered: Sep 2004
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
The last 6 mths I worked in a cubicle. Did a job that I had done off and on for many years. I did the position for 18 mths straight in 95-96 while the person I replaced after her retirement, was on sick leave due to breast cancer.
She also had breast replacement which is why she was off longer.
I literally was lost in that cubicle. I couldn't remember that I had just completed a task. I kept going back and checking my work to see if I did something. Numerous times.
I would do a to do list. Tried to organize myself, for I had always been more organized than most folks. Spinning my wheels. I literally cried every morning for three months just getting up and going to work. Cried almost every day on my way home.
I'd come home in the afternoon for lunch, just to call my Mom and tell her how I was forgetting how to do things. I was referring to a manual on how to do things that I used to do not even giving it any thought. I couldn't remember my job. I was petrified. Scared out of my wits.
Trying to hide my defiencies from my bosses. They asked me to do a time effenciecy(sp) test to see where I was spending my time. I knew why I couldn't get done. How do you put down on paper that you forgot how to do something and had to look thru the manual???????
I get upset just thinking about those days.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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posted
I've been working, but just 2 weeks ago started a sort of sick leave: I work 3 days a week from home. I'll do this for a few more weeks and take it from there.
I don't have much choice, it's only me so it's either work or I don't pay my bills.
I think it wouldn't be so bad if my job didn't entail being on call 1 night a week and once a month. And with being short staffed for several months now, the on call has been more frequent.
But it's been from hell, no doubt about that. My performance isn't any where near close to what it used to be.
-------------------- Jennifer Posts: 266 | From Ocean County, NJ | Registered: Aug 2007
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Peacesoul
Unregistered
posted
Pam, I like you, would cry most mornings getting ready for work and be so down on my way home. Not because I was confused at work, but because I felt so sick and anxious, I didn't have the energy to get up at 5 am, get dressed, make lunch and take the 40 mins bumper to bumper traffic in every day. Then to face all these people at work who were so demanding. I hear ya, it's so tough!
Jennifer....same with me, It's just me and I need to work. Yes I can get disability for a long time if needed, but I don't want to count on that. I want to work and feel like I'm part of the world again. I just don't know if I'm going to be well enough to do that. I have to believe it will all work out just fine. Stay strong ladies
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
As my illness progressed, I narrowed down my freelance work, until I was finally dealing with only a few people and projects a week. The income wasn't much, but it did help offset the medical bills that started piling up.
I never completely quit working, even at my sickest, though there were times I thought that would be the smartest thing to do.
Then, gradually, over the last two years, my health started to improve. Exactly a year ago, I was offered a full-time job in an office setting for a very high-powered company. I debated.
And accepted the position. In the beginning, it was pretty tough to get up and get to work. Plus, all my neuro symptoms were still nasty. It was difficult some days, to stay focused. Over time, it all got easier, and I continued to heal.
Now I'm working, exercising, and I've gotten a semblance of life back again. The holidays were busy with a lot of dinners and parties. I'm not 100%--more like 80. Still taking 3 abx (1500 mg of one, and about 1200 mg of another) and supplements.
For me, the decision to accept the job was a good one. It's helped us begin paying off the horrible debt we incurred from my medical bills. Plus, I love finally having my insurance covered. And I like having a relatively normal life, after so many years in a lyme-sick haze.
My mother's comment when I got the job offer was: wow, they're usually laying off people your age.
So there you go.
Andie
Posts: 2549 | From never never land | Registered: May 2005
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Peacesoul
Unregistered
posted
Andie, that is a wonderful story. It's so nice to hear success!
I'm suppose to go back to work in 3 weeks, but may take one more month. As much as I dread getting up again at 5 Am, and sitting in loads of traffic, I think I need to get busy to get my mind off of me. I just have to keep in mind, the days I feel really sick, I can just chill.
Thanks for sharing this story. Really helped :-)
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