Are you still working?

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Heartsong
Regular Member


Date Joined Feb 2008
Total Posts : 42
   Posted 10/5/2009 8:44 AM (GMT -7)   
Have any of you quit your jobs because of lupus/MCTD?  Or transitioned to part-time work?  When did you know it was time to quit?


 
43 year old female
DX:  Mixed Connective Tissue Disease (lupus, RA, polymyocitis, scleroderma) Jan 08
Meds:  Prednisone 9 mg, Plaquenil 400 mg, Wellbutrin XL 300 mg, Calcium/D 1200 mg, 81 mg aspirin, ibuprofen and Darvocet as needed for pain ( I take it maybe 3x/week) 

Post Edited (Heartsong) : 10/5/2009 2:04:01 PM (GMT-6)


Jenkstrojanmom
Regular Member


Date Joined Sep 2009
Total Posts : 44
   Posted 10/5/2009 12:08 PM (GMT -7)   
I recently put in for fmla and I plan on cutting back on hours after the 12 weeks are up. I have Sjogren's,Lupus,and RA. You have to do what is best for you.
 
JenksTrojanMom
Lupus,Sjogrens Syndrome,R.A.
Mother of one wonderful teenage son,blessed wife
33 yr old  Teacher Assistant in Okla.


nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 10/5/2009 3:38 PM (GMT -7)   
I'm still working. Two jobs, actually....one full-time, one part-time. I feel as though the day is approaching when I won't be able to do either of them anymore. It's extremely difficult to keep it together now. I have to read things 3 times to understand them. I am constantly making typos, etc. I have to watch myself, and check and double-check my work. There are many days when I'm not well enough to come in to the office, but I'm being allowed to telecommute part of the time. This helps a lot!

So far I'm still productive. But I think I want to quit before others notice that I'm losing my cognitive ability. And I don't want to end up at work and not be able to drive myself home someday, because of pain/vertigo/whatever!

It's really sad....
Autoimmune hepatitis, Hashimoto's thyroiditis, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Reynaud's syndrome. Possible lupus and/or Sjogren's Syndrome - diagnoses pending.


Heartsong
Regular Member


Date Joined Feb 2008
Total Posts : 42
   Posted 10/6/2009 9:29 AM (GMT -7)   

Thanks for your replies.  I left work one day with vertigo/nausea so bad that my principal (I'm a teacher) had to drive me home.  Another time my husband was able to come get me.

There are many, many days when I don't feel like teaching and go anyway.  It bothers me when able-bodied healthy teachers take "mental health" days whenever they feel like it, and I work hard NOT to use my sick days because I'm constantly worried I'll have a terrible flare and end up missing a whole week or so.

My PCP has mentioned the "disability" word.  It sounds like a distant daydream in an ideal word.  I just can't imagine it.  I'd like to...I just can't believe I'm really that sick.

 


 
43 year old female
DX:  Mixed Connective Tissue Disease (lupus, RA, polymyocitis, scleroderma) Jan 08
Meds:  Prednisone 9 mg, Plaquenil 400 mg, Wellbutrin XL 300 mg, Calcium/D 1200 mg, 81 mg aspirin, ibuprofen and Darvocet as needed for pain ( I take it maybe 3x/week) 


Raven1954
Regular Member


Date Joined Sep 2009
Total Posts : 31
   Posted 10/7/2009 2:19 AM (GMT -7)   
I quit 3 years ago,and went on disability.Hardest thing to do, but have to do what is right for you and your body. Asess how effective you are at work, that will help make your decision,also how it would feel to be able to rest,eat,sleep,take a pain pill without worrying about driving.Could try a pro's and con's list,but I believe we know inside when it's time. Hard to do,but important(my opinion).
sle since 1986, cerebritis,pre diabetic, peripheral neuropathy,mvp cataracts,degenerative disc dx. liver failure due to tylenol for to long,Meds: prednisone,inderal. synthroid,tegretol,nasonex,phenergan,dalmane,valium for fibromyl. dilaudid q8 for pain,cytoxin iv every 6 months,asa daily,albuteral inhaler,frequent antibiotics. Learning to live a differant life now, cpap for sleep apnea.Life is not a journey to the grave with the intention of arriving safely,in a pretty and well preserved body,but rather to skid in broadside,thoroughly used up,totally worn out and loudly proclaiming-WOW,what a ride!!!


suetoo
Regular Member


Date Joined Jan 2006
Total Posts : 395
   Posted 10/17/2009 9:37 AM (GMT -7)   
Hi! Heartsong, and everyone,
I am a teacher, too, and I have decided that this will be my last year, and only hope I can get through till June. I have drastically cut my hours over the past 10 years, I had to give up floor nursing and finally couldn't even work charge because I couldn't run unit to unit anymore and my 8 hour shifts were always 12 or 14. It took me 4 days to crash and become functional again, and it started all over. I took a .5 FTE but am forced to do almost full time work for half time pay, because, why, that's what teachers do. And my class size has doubled each of the past 3 years. I can get a small retirement with 30 calendar years when I turn 55 in May, but I just talked to my rheumy about permanent disability. I have had con't chronic and acute infections for the past 7 months, cellulitis in my fingers, a pilonoidal cyst, mouth and nose sores that just relocate, and a monthlong bout of "flu like illness", diarrhea and not getting to the bathroom in time, and confirmed strep throat twice. And it was my first summer not working a perdiem job since I was 11. I asked about needing a lawyer, and he thought it would be a good idea as lupus is very diffiucult to "prove". He did imply that my APA lab work was a start. I am going to have heel and hip xrays, some days I can hardly limp enough to manage to walk. Then do blood work in 6 months. I tried to wean off my 5mg of prednisone twice, figuring I was so sick I might as well be that sick off the pred. Never thought I could feel much sicker.... Boy, was I stupid and WRONG! And I am P*($*&%@#^ because I really love my job. My husband really wants me to stop working. It will be really tough financially, but with our faith in God, needing only one car..... and my quilting, I have promised my family to start the retirement paperwork. There is a really good thread here, a posting by Harley Diva that gives lots of info and encouragement for the process. My ANA is positive, but dropped in titre, and what if the prednisone suppresses the very autoimmune antibodies that would be enough to be elibible for SSD???????  So I feel like I am caught between a rock and a hard place. It has taken me 5 years to make this decision.  It is a daily struggle to work effectively, multitask, and do what is required at school. Some mornings I can't find my computer monitor for the sticky notes! I worry about my self noted decrease in cognition. That scares me more than the physical issue of not heading down a hall where I need to go because I don't have the muscle strenght. It's time. And the dr. did change my NSAID, and I am blessed that I have a supportive husband and a good dr.  And all you guys,
hugs,
suetoo

God knows, even if I don't....
CNS Lupus 2005, APS, Hashimoto's Thyroiditis
Meds: Plaquenil, Neurontin, Thyroid, Piroxicam, Aspirin, Atenolol and Norvasc, Prednisone 5mg daily and Paxil, Ambien every night.


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 10/17/2009 9:47 AM (GMT -7)   
Heartsong,

One of the most important things you can do when you have lupus is make sure you give your body plenty of rest. The UK Lupus Site described it like this:

"Take time to think of the activities you did before you had lupus. Changes may be necessary but these need not be negative ones. Learning to cope with your lupus and taking control of it and not letting it control you will enable you to act with a positive attitude. It may be that you cannot manage to work the hours you used to work. However, this may not be an option due to financial commitments. There are other ways to overcome this hurdle. You may be able to spread the hours you work over more days or be able to take a break in the day as many continental countries do. It is now more than ever crucial to look after your body, it is no good pushing yourself to the limit. Learn to pamper yourself a little, learn to accept help when offered and don't push yourself to do anything that may be unnecessary - some things can wait until tomorrow.

Remember the body also needs time to rest and rejuvenate and start again."

Chronic illnesses sure do put most of you working women in a bind and my heart goes out to you.

Pat
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

prednisone, plaquenil, leflunomide, neurontin, synthroid, triamterene, actonel, niaspan, tri-est, cymbalta, tricor, acifex


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 10/17/2009 10:25 AM (GMT -7)   
This is a tough decision to make. Lupus is such an up and down roller coaster ride. Even though I was having major organ involvement and one infection after the other I had a hard to believing that I was sick to the point of losing my career and going on disability. The decision was taken out of my hands when worse came to worse. I was not fired, but I was "counseled" by my superior that it was time to give up and go home. I wish I had made the decision and left with a little more dignity! It's just that every now and then out of the clear blue a good day would pop up and convince me that I wasn't sick at all!! Good luck! Judy

flower woman
Regular Member


Date Joined Oct 2009
Total Posts : 40
   Posted 10/21/2009 4:41 PM (GMT -7)   
I'm new on here! I have SLE and APS took 4yrs to diagnosis........Giving up work was extremely hard for me and i went into a deep depression when i finally accepted i could not work but i did'nt stop without trying various things i could not sustain though.....i went into quite a deep depression and as soon as i had a good patch i would start to plan what i may be capable of but before i got any further i would be incapable again so it was'nt a choice for me my body could'nt cope with it and i take each day at a time now!! I live in hope of change but i had to mourn the old me and appreciate life from a very different perspective now...

bird lady
New Member


Date Joined Sep 2009
Total Posts : 18
   Posted 10/21/2009 5:20 PM (GMT -7)   
Went on a forced disability in 1982.  I foundered around for 7years and moved to FL  Still foundered and then I started a cottage industry it thrived and so did I [to an extent , lots of iillness]Then 19 years ago bought a place in a agricultural area where I did well for 11 years.  Started to make a comeback and was stricken with a horrendous flare.  I am off predisone and am trying to stabalise Greatly reduced my cottage industry and actually am losing money but this I believe is part of my thread to life so I hang in there.  I raise exotic birds {Cocatoos] each and every one is a dear friend to me.  I believe you need to have something to keep your mind and body active, within reason.  I find now at the age of 72 I have had to slow way down.  I have SLE with heart , lung liver, kidney [one kidney is dead], joint, RH. am having short term memory problems my emotions are rampant from the predisone and I am having sleep issues.  Just keep stepping ladies and realise that you must work within the guidelines of your body and minds ability.  Good luck I have made it to 72 and am still kiciking, well more like stepping.  Lupus is not the end of life it just feels like it and somtimes takes you to the brink, but  you have life until your experation date and only God knows the date. Bless

flower woman
Regular Member


Date Joined Oct 2009
Total Posts : 40
   Posted 10/21/2009 5:56 PM (GMT -7)   
Nice to get my first reply bird lady! I admire you for keeping going! I worked as a florist for 18yrs mopst of which was self employed flogging myself for not a lot of money but the love of my work i think but i was forced to let go...tried part florist work but was unable to do certain aspects of the job and though my employer was told of my dissibilities and was happy with what work i was capable of back then it infuriated her that i was not able to lift and work extra hours but when i left for a full time job in a hospital lab she was very sorry however i had no idea of what was to come....i was very badly affected by flourecent lighting and i went downhill though i did manage a few yrs at the hospital they dissmissed me on the grounds of ill helth and said they could'nt accomidate someone with my complex condition...i went to college to develop my art..fancied myself as an artist...had to reduce myself to one 2hour class per week due to the lights i felt ill! i would like to develop my art futher but had to give college a miss this year and just paint when i can at home for now!! take care x
SLE sufferer with APS on plaqanil,mepacrine,pred dose dependant on flares,asprin,omeprazole,calcichew D2,fluoxetine and various pain meds.

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