nurses with SJS

[Rezgirl37]

I was wondering if anyone is a nurse and still working as a nurse. I was recently dx with sjs in June and on short term disability currently. My flare is a little better, but no where were I want it to be.  I would appreciate any thoughts. I'm holding out hope for continued nursing.
Shere

[eye2dry]

hello Rezgirl37

I am 55 years old and am an LPN in a dermatologist office.

Before that I worked in family practice.

I work 3 full days a week....hours on my feet depend on pt. schedule.

I generally work 9-11 hour days with only a 20-30- minute break.

Some of our procedures , such as facelifts, liposuction, Moh's surgery, skin grafts...require standing in one

place for several hours at a time. Suturing is harder now d/t my stiff fingers and hands.

I love it!!! it is easier to do this than the work load I have at home.

I have always enjoyed my job and hope to be able to retire from it at 62 to 65 years of age.


If my health remains as it is...I think I'll make it.

What type of nursing do you do?

I prefer working in a physicians office d/t the great hours...no nights, weekends or holidays.


take care.

eye2dry

[bailey00]

My mom is a nurse and also has sjogrens. She currently is unemployed and has been so for 5 months, she currently is in a bad bought of depression. But before all of that her vision was failing terribly making driving and catheters/sticking veins hard. My mother loved to do hospice, but because of her failing vision and often her fatigue she was labeled as a "bad nurse" and laid off. She is 51, she is also having an even harder time finding a job. My mom is an excellent nurse, and has been one for 30 some years but people are mean when they don't understand, and if you have to work full time like my mom did, I don't want to be pessimistic but it may be hard. I mean she loved what she did, she just worked with some catty women. So, please watch yourself even great nurses are subject to petty gossip.

[ellieas]

I retired in June after 40 years of nursing. I wasn't dx'ed with SS until 3 years ao,but I am sure that I have had it for years. I worked full time tho there were some days when it was difficult. Once in awhile,  I did take a day off to rest. I knew that if I stayed home I would get depressed. I did retire one year earlier than I had planned, but I was 65.
I have moved to New York to be near my kids and I am really happy!

Good luck!

Lesley

[Nancy60]

I'm not a nurse but am a physical therapist, so do similar amounts of lifting, standing, walking etc...  I had to change to an outpatient setting so it wouldn't be so much walking as hospital work, then switched to home health so I could have more flexibility with my schedule for rests, etc... I work with kids so I am pretty active and there are days it is hard. I'm 53 and hoping I can make it to 65 before I retire. It's hard but being willing to change settings etc as your abilities change helps keep you going.

Nancy

[cargillwitch]

yes I am a nurse! I was formally diagnosed 2 + years ago but like most had symptoms for some years prior. I am currently 44.

I work coordinating perinatal nutrition programs for the Public Health Agency of Canada.

I work with First Nations , Metis and Inuit families and am very fortunate to be able to set my own schedule more or less.I run cooking classes, infant massage workshops, babies and music programs, swimming with babies etc.

Lots of home visits.

Very few weekends save prenatal classes and no nights.A huge plus.

I am not sure I could do hospital nursing now- although it never appealed to me anyway.

I did however have to say good bye to attending births, which I dearly loved, as a Doula. when you left at 2am you had no idea if it would be a 2 hour birth or a three day one- and my health is too variable( as I am sure everyone here understands!)

If you are able to look at the wide variety of options available to nurses you might see something that might be a better fit for someone with Sjogrens.Public Health nursing, health education,etc.

[Irishlass]

I am not a nurse but I am an AHP.

I am working 1 to 2 full days per week & half days the remaining days. I do struggle with fatigue & pain but am grateful that I am able to work at all (had to take some full time sick leave for a while).

I don't have a firm diagnosis yet which means I am just taking painkillers.

I work in Research though & this involves less physical work, which is a bonus. & some flexibility with hours, breaks etc. I find this helpful if I am having a bad day, need to a have a snack before taking more painkillers or go to get more water!

Thankfully nursing is quite diverse, so hopefully you can find something you enjoy which also allows you to work around your health.

[grettajo48]

Before I retired 3 years ago I was working as 12 hour shifts in a busy ER. It was much too hard on my body and I had to quit. I agree with Irishlass that nursing is quite diverse and that there are more suitable options out there. Good luck!

[rapnzl]

Occasional lurker, first time poster.

Probably Primary SJS (not officially dx'd), so not as difficult to work as it is for many. Sx progressing over about 10 yrs, from severe dry eyes/mouth to constipation and "female" issues, but without the horrendous fatigue. Acute oncology care in 12-hr. shifts was manageable (and I loved it!), but corporation decided I was/was not [insert bogus reason here] a year ago. After attempting a few other career options, I managed to find an organization that recognized my experience and compassion. Never thought I'd end up practicing in a SNF, but am finding it to be more forgiving of my physical situation than I anticipated.

I have to work to support a disabled spouse, and so far am well enough to work 32 hours a week. Counting on providence to carry me, until I win the lottery!

BTW, it's comforting to know there are others out there in my shoes! I wish all who are searching for their best employment options in this field a heaping helping of luck!

[tmarie0183]

I am a nurse and have been working since my diagnosis approx 4-5 years ago.  Doing "floor" nursing in the hospital did end being a little too stressful for me in the end, and I currently work in a neuro clinic doing infusions and plasmapheresis.  I work 4 10 hr shifts a week, and MAKE myself go to the gym 5-6 times a week.  I know sometimes that seems impossible but you will TRULY feel better with exercise