Trying to work with lupus

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Regular Member

Date Joined Jan 2013
Total Posts : 47
   Posted 6/27/2014 8:57 AM (GMT -6)   
Hi everyone!
I'm feeling super down right now and need some advice. I have been a nurse for 5 1/2 years, working mostly as an ICU nurse. I recently changed jobs to a sit down job that still allows me to use my ICU mind but don't physically have to pull and push on the patients. I thought this would solve all of my problems but I am sadly mistaken. I have been at the job for 2 months and am still having pain, fatigue, etc. Unfortunately, I had to switch to nights so that has really messed up my sleep schedule (I'll be switching to days in 2 weeks!). I am not driving home crying in pain every day like I was before but I still feel like crap! I have now been sick for 9 days straight with pericarditis/pleurisy, vertigo, and coughing, chest tightness, coughing up sputum, etc. I have been on antibiotics for 2 days but still feel like hell. Supposed to go to the doctor today if I'm not feeling better (even though I'm very stubborn and don't want to). My problem is, I'm new at this job and don't want to mess it up by having to call off. I've already had to call off 2 days for a flare, had to leave early to go to the ER on the night I got vertigo and pericarditis/pleurisy, and now I had to call off last night because I can't stop coughing or barely get out of bed. I am not allowed to apply for FMLA until I've been with the company for a year. At times, I feel like giving up and just applying for disability. What the hell am I torturing myself for!? I've been trying so hard to keep working and I've changed my entire life for this darn disease and still don't feel better! I'm stressed out, feeling depressed, having anxiety problems that I've NEVER had before.. I just don't know what's happening to me. I could just sit and cry. I'm 26.. this crap isn't supposed to happen to young people!! Sorry for the vent but I feel like no one understands.. cry
Nicole- 26, married, no children
Endometriosis, Lupus, Raynaud's, Degenerative Disc, Migraines
Meds- Vitamins, birth control, Plaquenil, Prilosec, Lyrica, Folic acid, MTX injections weekly, Celebrex prn, Tylenol prn, Tramadol prn, Zofran prn

~Don't worry about tomorrow, tomorrow will worry about itself. Every day has enough trouble~

Regular Member

Date Joined Jun 2010
Total Posts : 23
   Posted 6/27/2014 9:12 AM (GMT -6)   
Oh Lupie {{{hugs}}} I'm sure everyone will agree this forum is the perfect place to vent, so vent away!

And please do tell your doctor everything. Write it down so you don't forget or omit something. Drink lots of water and rest as much as possible.

Elite Member

Date Joined Jul 2009
Total Posts : 14475
   Posted 6/27/2014 11:11 AM (GMT -6)   
I understand where you're at. This disease stinks to high Heaven.
We sacrifice so much of our lives for this disease.

I was in the same place you were at three years ago. After trying to make a go at it I finally gave in and stopped working. Sometimes you just have to say enough is enough. Listen to your body and do what is best for your health and wellbeing.
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Regular Member

Date Joined Jan 2014
Total Posts : 360
   Posted 6/27/2014 12:39 PM (GMT -6)   
Oh LupieICURN I am sending a gentle hug your way. I so get your plight as I'm being faced with the same decision. My boss and coworker actually told me they didn't want to see me only living to work. (and it wasn't because they want me gone believe it or not!!)

I'm waiting for them to find a replacement and then I'm going on sick leave. Then I can possibly go back 2 days a week and be on disability. (I'm in Canada where the igloos are, not sure what types of assistance are in your area).

It has done a real number on my pride. I'm a fighter and I can't help but feel I'm giving in. But I have to. I can't just live to work and cry on the way home in agony then spend my days home trying to recoup. It isn't worth it.
Be who you are and say what you feel because those who mind don't matter and those who matter don't mind - Dr. Seuss

Regular Member

Date Joined Jan 2013
Total Posts : 62
   Posted 6/28/2014 12:42 AM (GMT -6)   
Not being sure of the differences...

It may not use your ICU brain but have you looked into nursing jobs that would allow you to telecommute? I see ads for nurse case managers, help lines, even triage nurses that are remote, from your home office.

I get the frustration/anger/I've had enough, this isn't fair and hope you're feeling better and find something that you can live with soon.
Laura aka tenXmom
AI Hep - AI Pancreatis - Lupus - RA & Osteoarthritis - Reynaud's - Fibro - AIED - TMJ - Sjogren's - and whatever is going on with the gallbladder...
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