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» LymeNet Flash » Questions and Discussion » General Support » Working Even With Lyme?

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Author Topic: Working Even With Lyme?
Ellen
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Member # 42834

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Hi. How many of you go to a paying job each day even with Lyme disease? What helps you make it through the day? Have you worked while doing central line infusions at the same time? If so, how did you hide all the tubing and antibiotic balls/bags/syringes? I used to thread the tubing under my clothes an put the antibiotic ball in my pocket, but now women's clothes aren't made with pockets! Any ideas other than an ugly and weird looking fanny pack? Do you lie down over lunch? If so, how do you explain why to the others at work? Are you given a reduced work load? If so, how did you get there? This last question is what I'm needing help with the most. I simply CANNOT see 24 patients in a day, especially when they're all sick and elderly! I tried telling my boss and the girls doing the scheduling over and over that I can only see 10-12 per day, but no one is taking me seriously. I think the only way they'll get it is when I end up keeping them working through our lunch hour and then until 6 or 7pm when we're supposed to get off at 5pm. How have you gotten your boss to understand that you're too sick for a normal work load without firing you?

--------------------
Ellen
_ _ ___________ _ _
lyme disease
dysautonomia
Chiari malformation
anxiety

Posts: 72 | From Birmingham, AL | Registered: Dec 2013  |  IP: Logged | Report this post to a Moderator
Ellen
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Member # 42834

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bump

--------------------
Ellen
_ _ ___________ _ _
lyme disease
dysautonomia
Chiari malformation
anxiety

Posts: 72 | From Birmingham, AL | Registered: Dec 2013  |  IP: Logged | Report this post to a Moderator
Lymetoo
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Member # 743

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I don't quite understand your situation. It was hard to follow the large block of print. Most of us cannot read large blocks of print.

If you are posting with your phone, you can always come back to edit by clicking on the "pencil/pad" icon and put some space in there for us.

At any rate, it sounds like you are very frustrated with your work situation. I hope someone will be able to share with you what has worked for them.

[ 12-09-2013, 05:52 PM: Message edited by: Lymetoo ]

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

Posts: 95453 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
GretaM
Frequent Contributor (1K+ posts)
Member # 40917

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Hi Ellen,

I work 2 days a week now that I'm on IV. I can't be at my job with an IV-it is unsanitary.

Before with oral abx I was working full time plus, and it was draining.

I don't know how I did it. Now two days tuckers me out.

My coworkers are very supportive. They don't understand lyme but they don't judge me or ever give me a hard time for being slow or not pulling my weight.

My boss at first didn't know much about the controversy of lyme treatment in BC, but he is supportive also and I think sees me struggle sometimes so knows I'm not faking it.

I am blessed for having great coworkers and boss.

Really won the lottery with them.

Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013  |  IP: Logged | Report this post to a Moderator
peonyprincess
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I have been working FT throughout this illness. The first year I was so sick I often had to lie down on the floor of my office. Luckily, I had just been given my own space. Before that I would go out into my car and recline the seat.

I did not have an IV line so cannot help with that. The mantra I used for many months was "fake it til you make it". I would smile and try to say hi in the hallways to keep up my appearance etc. It was very hard especially when I would have these seizure like events with shaking etc.

Several times I came into work and would have to leave go home to bed. But I just entered my third year of treatment and my health is pretty steady. Down to a few manageable symptoms.

Also my boss knew how sick I was and was considerate of it. Funny thing is several months ago she started experiencing transient amnesia, problems with her memory and word finding etc. She does not believe it is lyme (I do) but she is more empathetic now that she is going through a medical crisis.

Not sure how others work FT with this crazy illness.

Posts: 68 | From NE | Registered: Aug 2012  |  IP: Logged | Report this post to a Moderator
map1131
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For me it took 2 1/2 yrs working 50-60 hrs a week.
Putting my career before my health. I knew no other way to do it.

One day when the alarm went off....I couldn't get up and face another stressful long long day, week minute of putting the corporate America before my health.

I still wonder if I could have won this fight many many years ago if I would have listened to my body telling me STOP and help me.

Maybe a year off would have saved my 28 yr career with the company? Maybe that was what I thought my plan/life was about, was working hard, harder and sickest.

Maybe it's just as it should be and I was not meant to do that for the rest of life? Maybe I'm going to be something else someday?

Life is not always as we plan it.

Pam

--------------------
"Never, never, never, never, never give up" Winston Churchill

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desertwind
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I am back to working again after being off for Lyme and Chiari surgeries.

I work for myself as a Clinical Psychologist so I can make my own hours which is good but I am also 100% responsible for every aspect of my job and non clinical functions.

I would only work every other day when not well and space my clients every other hour to give me time to lay on the couch in my office and "recover" from the energy required for each session.

I would take time to get out of the building even if to just sit in my car and listen to some healing music.

Food was a big piece for me and need to eat something every 60 minutes or I would crash.

When I had a PICC line I tried my best to keep it non visible but there were times when co-workers and clients would see it. In those cases I would share only as much as I felt necessary.

I am fortunate that I do not have a boss to content with so cannot offer any feedback on that aspect. If you are working in the medical field seeing clients you will be of little value to them and yourself if you are over-worked for your current condition. Quality over quota. It becomes a liability issue and I would have yet another serious sit down talk with your boss.

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Kudzuslipper
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It is hard especially when you first start treating. Sounds like you work in a health care setting. If you only saw 12 patients a day what would happen to the other 12 patients? Could other workers pick up the slack? It's sounds like there is a systemic problem and that your office may be trying to handle too many patients (what else is new?). But your being sick is not going to be the catalyst to change your office's work flow.

So I found the best thing in my situation was to propose an alternate solution within the job requirements. Who could help out and pick up slack? What could be streamlined? Is there a part of your job, paperwork perhaps you could do from home?

BUT, I think if you are asking for help to do your job, you have to be prepared to hear that "if you can't do your job we need to find someone who can." I always offered my boss and my main coworker, that if it ever got to a point that they needed more than I could give, I would take short term disability, and apply for long term if it got to that. This not only helped to make them think I had their best interest at heart, but also the offer made them take my condition seriously. I was and am lucky that I can work from home if I need to and that helped me greatly.

But I think for an employer it's a logistical question. If you can figure out a way for the work to get done during the worst of your treatment, and you are a valued employee, your boss will want to keep you, at least for a while... We all know that employers can lose patience with the length of Lyme treatment.

And like Pam said, maybe you have to choose your health or your career... I have often looked back at my first year of treatment and wished I had taken the time. But 2.5 years later I am much better, not cured, but much better and I still have my job. For me it was worth fighting to keep as it is a job that I love and it also affords me flexibility, which I know I need, and would unlikely get in any new job.

Good luck.

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jjourneys
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I work full time. It is hard to do, but I'm doing it. I have been known to take a lunchtime nap in my truck when needed. I also take walks around the parking lot just to let my head clear and get my body moving. I eat at my desk all day long as I seem to need something in my stomach every 2 hrs.

I take vacation time if I'm too sick to go to work.

I would never expect to have any of my co-workers to pick up the slack because I don't feel good. I tough it out and pretend on the outside that there are no issues. I work in a very stressful job, by the end of the day I am spent, emotionally, physically and mentally. I give all I have to give at the office. If someone has to pick up my slack, why would they want to keep me. We are all busy and I could never ask another busy co-worker to do my work because I don't feel good.

If it gets to that point I'm hoping short and long-term medical disability will be granted.

Also check into the FLMA (I think that's it) - family leave.

Good luck, it's hard, but some of us have to push through it all.

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gmb
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When I was finally diagnose and started treatment in March 2010. The owners asked if there was anything that could be done to help during treatment.

I asked if I could reduce my work week to 4 days and get a 3 day weekend to help with Dr visits, labs, and home chores. A 20% pay cut really hurt, but the time off helped greatly.

In Sept 2012 I went back to 5 days a week. By that time I had been on IV Rocephin for 10 months and was seeing good improvement. I was also getting pressure from the owners on potential lost business with me not in the office to take calls.

I ended up on IV for another 6 months, getting weekly nurse visit for dressing changes in my office or going to their office during my lunch break. I had my PICC line removed April 1 2013 while at work and it ended up a difficult process.

Long story short.. I really had to keep working to keep paying for the group health insurance. Working probably has slowed my recovery.

gmb

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Ellen
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Thank you everyone. Sounds like you really have to juggle to keep all the balls in the air too. I'm a 1099 contractor, not a W2 employee, so I don't think FMLA applies to me. I'm an optometrist, but another doctor owns the practice and calls the shots. I first got sick right when I graduated, so I've never had the funds or health to open my own practice. Thankful to have a job (3 days/ wk) but THIS IS HARD! Thank you for your input.

--------------------
Ellen
_ _ ___________ _ _
lyme disease
dysautonomia
Chiari malformation
anxiety

Posts: 72 | From Birmingham, AL | Registered: Dec 2013  |  IP: Logged | Report this post to a Moderator
Lymetoo
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quote:
Originally posted by Ellen:
I'm an optometrist, but another doctor owns the practice and calls the shots.

-
Now I understand.

Hope it gets better!

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

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terv
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I had (have) the same experience as map1131. Worked through it all until I had to stop. Still wonder if I had stopped earlier if it would have spared me from further damage, IV expense, and my career.

[ 12-15-2013, 10:19 AM: Message edited by: terv ]

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