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Scared of losing my job

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Lyme Disease
Were you able to continue working as your symptoms got worse and/or during treatment?
difficultYes. I worked while experiencing symptoms but not during treatment - 7.7% - 1 votes
Yes. i worked with worsening symptoms and during treatment - 30.8% - 4 votes
No. I had to leave my job to cope with symptoms and while recieving treatment - 30.8% - 4 votes
No. I was fired from my job due to symptoms. - 0.0% - 0 votes
I did not have a job during this time - 7.7% - 1 votes
it's complicated. - 23.1% - 3 votes
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Posted 9/18/2012 7:07 PM (GMT 0)
I could use some advice on working with Lyme and during treatment from those of you who have been through this. My boss has told me that due to my illness and the unpredictability of it day to day that I am unreliable. I work as an employment counselor with individuals with disabilities and as an instructor part of the year with teenagers with disabilities. It is only my boss and I who run these two programs and no one else in the agency really knows how to do what we do so there is no one to cover on days that I am too sick to work. Because of that it is extremely important for me to be on top of things because whatever I can not do or forget to do my boss has to pick up the slack. I do not call off work often despite my symptoms worsening. The only time I call off is when I can not think or speak and my movements are so slow and stiff that I can not drive myself to work. Most days I just work through the pain and the fogginess, fatigue, memory/concentration problems, and everything else but I am not able to perform at the level that I need to. Getting anything done is such a struggle these days as I can not keep track of clients and information and tasks. I make lists but then I become overwhelmed and kind of blank out, it's almost as if I can not even process the list of to-dos enough to figure out where to start and how to accomplish each task. Keep in mind I am not new to my job and I used to be able to perform very well.

Anyhow, back to the matter at hand, my boss has told me that I need to figure out what I am going to do. As of now I am in the process of getting an appointment to see an LLMD (I have to fill out some forms, send them back, and then they'll set an appointment and they are scheduling into NOV already so it will be a while before I have a definitie diagnosis and can begin treatment) I am also seeing a new primary care doctor who is very good at figuring out diagnoses so that if by some odd chance it turns out I do not have lyme I will be set up to explore other possibilities. However, based on my symptoms and what I have researched on lyme as well as other possible conditions (ie. lupus, fibro, RA) I am pretty sure I have lyme because nothing else really fits.

So my boss offered me the following options:

1) Stay fulltime but switch departments (eg. do a strictly desk job to eliminate the physical nature of job coaching that is tough on my body) Pros = Nothing phsyical Cons = working in a cubicle vs. my nice office and dealing with office drama, having to keep track of services for 100+ consumers

2) Stay in Employment Services but work Part Time to reduce the strain on my system and she would have to hire someone to take my Full Time spot. Pros = working less would allow me more time to rest and could improve my performance when I am here, more flexibility to miss work for sick days and doctor appointments cons = I lose the ability to put into my 401k, I will have to go on husband's insurance, if/when I feel better I can not take my Full Time spot back, I won't make enough money to pay all my bills and we will be stretched thin financially

3) Take a medical leave from work pros = I will have time to see doctors and take care of myself cons = I will not be paid during this time

 

I have no idea what to do. Each day it gets harder and harder to do my job but I don't know how to handle this situation especially since I have no idea what kind of time frame I am looking at in terms of treatment and when I will be feeling well again.

I hate to say this but sometimes I wish that I would get fired so I could at least collect unemployment and then rest and finish my masters thesis so that I could get a job doing group therapy which I love and I'm good at and I think I could handle (maybe, who knows) I just feel desperate and scared. I worked so hard for so many years to have a job I am good at and enjoy and now I might lose it all.

I have been working since I was 14 years old and I like being able to be independent. Thankfully I have a wonderful husband who loves me and stands by me in all this madness but I hate to rely soley on him to financially support us.

If anyone can offer any advice or suggestions on how to decide what to do I would so appreciate it.

Thank you all so much!~

Posted 9/19/2012 12:00 AM (GMT 0)
What the heck, I'll put in my 2 cents!! LOL!! A dangerous set of questions to be sure, as there are no really obvious good options for you.

Knowing what I know about how most people are going through treatment when they are at the stage you mention here, your health would be best served taking that medical leave of absence, hopefully being able to pick up some temporary disability from the state (if yours has that program). As you heal and start to feel better and be able to concentrate and function better you could then finish your Masters Thesis and go on from there. Unfortunately, there is no way to know how long you would be out from work though.

As I said, that's just my 2 cents worth!! smilewinkgrin
Posted 9/19/2012 2:12 AM (GMT 0)
Thank you Traveler. Your 2 cents is much appreciated!
Posted 9/19/2012 1:13 PM (GMT 0)
Hope, you know what is great? that you have choices. Lots of people don't have a choice at all. The fact that you can go on your husbands insurance is great.

If you are thinking about applying for disability at all, my lawyer told me do not go part time, keep working full time until you cannot do it anymore.

I could have taken family medical leave but am not sure when I would ever go back...as I still have symptoms, good days bad days...not as many bad days but still.

If I could I would stay home and let my body get better.

Wishing you the best.
Posted 9/19/2012 2:45 PM (GMT 0)
Thank you Flowergal. Yes I am EXTREMELY fortunate to have options in this situation. I am very thankful to have health insurance and that I can switch to my husband's if I become unemployed. My husband and I are considering the medical leave or maybe short term disability but I want to talk to my HR person to make sure I understand those options fully. My prayers are always with those who are struggling with any illness without health coverage. I have certainly been there many times in my life and it's a scary and stressful place to be.
May I ask where are you in your treatment and are you working, did you go on disability, how have you handled this?
Thanks for your input I really appreciate it.
Posted 9/19/2012 3:58 PM (GMT 0)
It sounds like he is giving you options as a disabled employee. (I am currently negotiating those at my employer, too). Have you considered asking your doctor to fill out FMLA paperwork for you so you can take it intermittently? I have a coworker who does that, she takes an hour or a day here or there and is covered. Also, if you identify your self as someone covered by EEOC and ADA, aren't you covered by those rules? If you reply with the right statement to the reliability concern of his, he can't really touch you.

Check out http://askjan.org for info. This site has been a lifesaver to me. I also contacted

Disability Rights & Resources
Fighting for Justice * Advancing Independence

800-755-5749 (toll free)
704-612-2744 (Video Phone)

and they are like having a mama tiger on your side! They would be able to help you with options too.

Hang in there! I am fighting to get them to install door openers since I have gone to a wheel chair full time.
Posted 9/20/2012 3:09 AM (GMT 0)
Hopeon12,

I wanted to tell you that I had a similar conversation with my boss about 1 month ago. However, he requested that I take a medical leave of absence because of the unpredictability. I, like you, relish my independence and I have always been and always will be a hard worker. It was really, really hard for me to agree to the leave, and for a couple of weeks, it didn't get easier.
But, not having the stress of work (I love my job, but like you, work in a small business where a lot of people depend on me), I realized how much I pushed myself to the brink of being seriously disabled. Having the time to be able to just focus on me and my health has helped me to reclaim a little bit of my life back.
Yes, I've had to shuffle around some financial goals and I know that next year will be focused on reclaiming the savings I'm using now, but health is more important than money. I know when I get back to my job, I'll be able to give it my all, instead of the 25-50% (if that!) I was able to give it before.
A good idea is to pick an amount of time for leave, stick to it, and then ask your boss to meet with you at that time to update her on your situation and then re-explore your options again, including more medical leave. This disease is so unpredictable, it's something you really have to take one chunk of time at a time! (does that make sense? haha)

I wish you all the best, and a stress-free and successful healing experience. Keep us updated!
Posted 9/20/2012 4:13 AM (GMT 0)
HopeOn12-I usually don't really state my opinions but I'm going thru the same thing, I worked crazy since 16 years old, I'm 31 now, work was everything to me, was working even 30 hrs/wk in high school. I've been suffering for at least 8 years, this past year has been absolutely hell for me. I pushed through it and pushed through it, crying on my was to work, being at work running to the bathroom to get sick, hardly able to walk up steps, people talking to me and I didn't even know what they were saying.

Another thing that was hard was all the comments at work, I couldn't take it anymore, I would explain to someone all about this illness, because they would ask, and the next day I would come in and they'd say, "what's wrong with you, your still sick?"

I've been on an FMLA leave for the past 2 months, I'm not going back, I refuse to work in this condition, it's killing me so bad, I"m 31 and I can't help feeling , how did I get sick at 31 yrs old, I'm very depressed, I'm alone, I sit home all the time, I feel like I'm never going to get better.

So I'm seeing a lawyer next week and applying for disability, and there are programs that will get me through until that kicks in(hopefully I'll be approved), on of the housing assistance programs in my area told me today, in order for them to help I have to be homeless and looking for employment.

I'm just saying this was also a very hard decision for me, but if your health is that bad, I would say take the leave, even consider disability.

And I was pushing so hard so I could keep my health insurance, but they're not even paying for anything, they denied my iv's, no reimbursment for doc app's, and then started denying my oral antibiotics, so I figured now there's no point in pushing myself anymore. I'll take off the government and then maybe they'll consider this a real illness.
Posted 9/20/2012 11:59 AM (GMT 0)
Hi HopeOn12,

I was in a very similar situation a couple of years ago, and I stuggled with the same choices. It's good to hear that you have a boss who is supportive enough to give you lots of options - that's fantastic!

My own decision was to take a short period of time off when I was at my sickest (just a few weeks), to then work for a few weeks on reduced hours at the start of my treatment and increase to full time again rapidly. I was able to change my work and stay office bound for a while too, as I wasn't strong enough to do my usual outdoors job. 

You have to decide what is right for your own circumstances, but I would recommend thinking about the effect on both your physical health and mental wellbeing. I think lots of people forget this latter part when making decisions about their illness. For me personally, taking a lot of time off work would have been exceptionally damaging for my mental wellbeing - I love my job and the last thing I needed was lots of time to sit on my own and worry about my health (especially while I didn't have a firm diagnosis at the start). The few weeks I did take off were probably the worst time of my life, as all I had was myself, my pain and my worry for company - not a good combo when I already had neural symptoms like depression and anxiety. 

Perhaps part-time working would be the best option in the meantime?

Good luck,

Kirsty 

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