The hobby post got me thinking. What job do you do? I still work pretty much full time. I have two jobs. I am a bookkeeper for my husband. We run an automotive repair shop. We have four guys on the payroll. I also do bookkeeping for a large grocery chain in my area. I keep busy with both jobs and I average about 30 hours a week.some weeks more depending on what time of the month it is. Got to pay Uncle Sam!
For years I was bakery manager but my body wouldn't keep up with the demands of the job. I didn't know at the time I had lupus but it was rough on my body. I was working 40 plus hours at the store plus the shop. I still obviously have rough days but adjusting my work schedule has really helped. The past few weeks I have missed some work at the store due to lupus. The shop unfortunately can not be put off as its our business and it never stops. It's flexible though. This week has been rough I filled in for pricing ( hanging tags) its an early shift start at 3am. 8 hours on my feet up and down I hurt. I've also had some out breaks of petechia this week. I'm assuming its been the stress of the week.
My son still lives at home but he's 21 so its not like I have young ones at home. He's gone a lot he's a junior engineer for Crowley Marine. I had him young I will be 40 in July (eek). My point is I'm not sure I would be able to work if I did have young ones at home. Work,house,husband,kids,lupus seems a bit much lol.
I am adjusting to having lupus. It was kind of a blow at first hearing the news but things made sense. Rather then push myself to get it all done feeling lazy if I didn't I know now how i will pay if I push myself.
I'm not gonna let lupus rule me but I do listen to by body. When it says stop I stop.
I love your last line about not letting Lupus rule you! Good for you! That's a great attitude to have. I work as an Office Manager full time. Its not physically demanding but it is mentally draining. I just turned 50 (there's a big EEK!) and have no kids at home (yay!) Just my husband, 2 older cats and a flying beagle. The beagle is like having a gradeschooler hopped up on sugar.
There are days I come home, fall into my chair and hardly move. Those are the evenings I'm falling asleep at 8pm. Then there are days I come home and get a lot done around the house. It changes from one day to the next. What doesn't get done today will still be there tomorrow.
I'm grateful to have a job that will allow me to take time off without question or arguement. The boss is very laid back and understanding. I have duties to fulfill but no time sensitive deadlines or quotas. Since I'm not "independently wealthy" and have to work, this job is a good fit for me.
"I'm going to get healthy or die trying"
Ruziska I have a flying dog of sorts myself. Lol. My son just brought home an alaskan klee Kia. He's almost 5 months old. Currently we are sitting as my son is in alsaka until July. He's a wild one and boy can he jump. We also have the sweetest most loveable golden retriever. He's 3 almost may 25. His name is Cash and he's my sugarbear. The puppy's name is Journey. They are a lot of fun.
I just retired, but I spent the last 25-30 years doing accounting for various service business over the years.
I am the field superintendent for an industrial painting contractor.
Right now we have several jobs going including sandblasting and repainting the interior of jet fuel storage tanks at O'Hare airport, several bridges and the exterior of several high rises in downtown Chicago.
I am 52 and have been working in this field for 34 years- If I was still "working with the tools" rather than supervising I would not be able to keep working.
As it is I still do a lot of climbing and am outdoors a great deal year round. This time of year it is not unusual to work 12 hours a day 6-7 days a week.
Between the fatigue and rashes I am looking forward to retiring sooner rather than later!
My kids are 32,31,24,21&17- Right now only the youngest girl is still at home so one way or another retirement is not too far off!
I am a nurse I work 3 twelve hour shifts a week. Over the last 3 years I have missed a total of 6 weeks a year do to flares or pulled muscles and things.
We have just opened a drug and alchol rehab and I am now working on that unit full time. So far it is working out very well. I no longer lift and tug on patients which is much better for me and the patients. I must say I work with a wonderful group in a very small hospital and they have helped me since I started having so many health problems.
This is the area I'd like the most info. (newly-diagnosed, though symptom suffering for 7 years). When my flairs started, I was able to take FMLA, and then the company allowed me to take LOA, but eventually fired me because they didn't want to continue providing LOA. I was with that company for almost 5 years. I got through the flair, and got a much lower stress job (at much lower pay) that was more flexible. Until this last flair, and then I was fired for not being able to come into work - as my hands didn't work, so I couldn't do the job. I was there for 2 years, the majority part time. Now I've been diagnosed. The steriods have worked seemingly quickly & there is no more pain in my hands. How do I begin the process looking for a new job? Do I tell them up-front? With the job market what it is, why on earth would an employeer hire me, with issues, when over-qualified job seekers go to the same interviews because of the economy? How do I look for a company that would be best for me to avoid flairs?
What companies offer work from home flexibility, flexible time off availability, no outside work, no degree required. Low stress, and preferably well paying? I think asking for all that makes me delusional. I'd like to work when I'm able, and unfortunately I am used to having 2 flairs a year, sometimes lasting a month or two. (However this was previously untreated).
I'm just possibly feeling over-whelmed with the new diagnosis, and how to proceed. My resume seems to keep getting more negative and un-reliable.
Anyone have some good advice or resources?
(first job w in call center management, 2nd job was manufacturing with bookkeeping duties, I am also a freelance photographer <15 years> however my body can not support the volume to make a profit in business).
I hate to say it but lupus varies on severity, I myself was told I'm quite severe. So, I was dx over a yr ago and I have been a hair stylist with my own shop for 17 yrs. I was always booked heavy, long days,then I would go and teach spin classes at the gym. I'm only 35 now.
So, in one year....I've had to cut back to a couple hrs a week and get disability. No more gym. Unfortunately for some of us work is almost impossible, I could never do what you do. You need to listen and accept what your body is telling you. I didn't at first and I kept landing in the hospital........I suggest you work as little as possible, and save some of the little energy you get for family and fun.
Read the sticky on the spoon theory. We all know how you feel
I am a Paralegal and have been for 26 years. There was a time that I thought brain fog was going to end my career. Luckily, because of my time in the field, I was able to get through it, but it was a very challenging time. The more I stressed about it, of course, the worse it got.
I call myself medically retired. I'm 22 and can't work because i'm sick all the time. I want to though... so go you! I wish I could have found a job like some of yall seems more like something I could have handled but I used to work minimum wage job at Walmart plus college and basically ran myself down.