Hi, i’m 22 and new here after finally just recently getting diagnosed after about 7 years of seemingly random symptoms.
My issue is that I just finished my practical nursing program and may be going back to complete my RN soon but now that I have my nursing license I want to work while I get my RN. My parents are paying for school and are fine with me not working or just some weekends, but I’m a little worries about working 12 hr shifts on my feet during a flare.
Any nurses out there have any advice? Or anyone who has a strenuous job with long shifts?
I was a nurse for more than 40 years- the first 20 years were on my feet in clinical settings with symptoms You learn to adjust your lifestyle and employment around how your illness impacts you personally and of course good medical care will keep your symptoms at a level that still allows you to function
I’m a CNA, and I feel that it gets to be hard sometimes. But everybody’s body reacts differently to things. In my eyes though, it’s worth a shot, because you won’t know unless you try. Worse comes to worse, you realize you need less hours or just aren’t able to do it. Good luck!
I was a CNA for 14 years and I too had symptoms for 7 years before getting my diagnosis this past year along with treatment. I went from working in a nursing home from 97-07 taking care of 12-15 residents in an 8 hour day to only being able to do homecare. Then the last 3 years became progressively worse and I’ve lost 3 nursing jobs do to my “unreliability” from flares and unable to function. Unfortunately I had to come to the realization that I could no longer be dependable to care for others when I needed cared for myself at times. I loved my job and it’s all I knew beings I started right out of high school and always wanted to be a nurse. I hope that with treatment you can continue cause I know in your heart you want to, but please do listen to your body and don’t over do yourself or you too will be the one needing cared for. Good luck in your career!
Congrats! I would STRONGLY advise you to work part time, or soon you will flare and not be able to work or go to school. Shift work and 12 hour days are really hard on your body. You can also apply to be a nurse for someone in their home which is less stress and pays well, or a visiting home care/community nurse. I found some info yesterday that might help your parents pay for your schooling. Scholarships for the disabled, and Lupus qualifies as a disability.
http://www.onlineschools.org/financial-aid/disabilities/
Best wishes!!
Sheila
Sorry to have to welcome you to the lupus community, but I’m sure after so many years with mystery illness you’re glad to have a title and a treatment plan! I know I was!
I can totally relate, I’m 27 and in school full time and working (not as a nurse, at a bar), last school year it was 2 days a week for about 8-10 hrs including commute, changing, etc (these take time too! Your “12” will probably go up to 13-14 when you factor these in, we have to when budgeting energy!) This school year, I have more classes, so I had to drop to one day/wk.
What I can say is I would have lost this job a LONG time ago for excessive absences if it weren’t for the fact that it’s a job that inherently tolerates call-outs AND an understanding manager that has given me my own special expectations (lighter ones, of course.) I also miss classes periodically, but I can catch up with the help of classmates taking notes, etc. Get school disability accommodations for sure, they can allow you special permissions for anything ranging from wearing a hat/sunglasses in class to deal with the fluorescent lights to longer test-taking times and no attendance penalties.
Legally, workplaces have to reasonably accommodate people with disabilities…but this is much more complicated. With school, you just talk to the office and they need a form from your doctor and talk to you directly about your concerns. My counselor even helped brainstorm more that I hadn’t thought of, based on what other students have dealt with in the past. For employees, for anything more than unofficial flexibility/understanding of your boss, I think it has to involve more like state/federal disability status, which I’m almost certain you don’t have (takes people years to get even when they’re very seriously disabled… It has to do with the government giving them money, so of course it’s denied at least as fiercely as any insurance company! Really sad.) I’m not eligible in the first place, since I’m an indep. contractor instead of employee status (this is why I get to choose my own schedule, though, so if I know it’s a heavy week with school I can just say don’t put me on the schedule this week.) With nursing, the staff you’re working with will either be familiar with lupus and understanding, or unfamiliar and totally insensitive (or worse, have or know someone with lupus that “isn’t a big deal”!) Whatever the case, reliability is an essential function of nursing, so accommodation of absence might not be seen as a “reasonable accommodation”)
I hope you find the first scenario, but even then it might be very hard to be reliable. This is especially true because as a new diagnosis, you’re not as stabilized–or at least as self-aware–as you will be after you’ve had it longer. I’m only 2.5yrs in and have improved a lot… While I was applying to school I was in and out of the ER, plus unable to work for a whole year, and depending on my parents while “doing nothing” in their opinion was not going over well at all (I live in a different state, so they were sending me checks and not seeing or helping with what I was going thru. We kept hoping the meds would kick in soon and I needed to keep my new state residency status for school, so I didn’t move home. Plus we fight all the time, which isn’t good for getting better.) Keep in mind that you will likely experience many new ill-effects from drugs to treat the lupus, unless you’re someone who can just take plaquenil and aspirin to manage it (I hope so! All of our dream!)
A suggestion for you, based on my experience when I worked in a research clinic, is that another very flexible form of nursing is as a “travel” nurse. It’s probably mostly RN though, since basically they are paying a lot higher rate to bring in someone to supplement or temporarily replace their existing staff. An option look forward to when you finish school! 
Managing with this unpredictable illness is all about finding flexibility!
Best wishes!
Brynn
Thank you all for the input! I really appreciate it. For now I think I’m just looking at starting as a weekend or PrN (as needed) to pick up shifts when I can and I’ll go from there .