I was just diagnosed in March. Although I've been getting sick more often with colds and such (having 2 small kids doesn't help), plaquinel seems to have things under control for the time being.
My question though, is how many of you are working full time? How many years after getting sick were you able to work full time? I currently work around 50 hours a week-- less in the summer (maybe 30-40 then). I'm just at the beginning of my career, with a LOT of student loan debt. I'm praying that I can work full time for many many years to come.
I've worked all my life, up to 50 hours or more until this past year. I'm 51 and was just diagnosed last year. If you take care of your health now, avoid the sun and watch your diet the rest is up to you and the severity of your lupus.
Up until a year ago worked over 40 hrs a week. I am now on medical leave and waiting to get approval for SSA. Was diagnosed last year with SLE, Fibromalygia and Vasculitis. Fatigue, severe migraines and joint pain are so bad that can’t work. I am lucky to just be able to do things around house and drive a few blocks to my kids school and back. Sometimes, have hard time doing that.
Best of luck to you. Hopefully your health will allow you to continue.
I was diagnosed a year ago. full time 40+ hours weekly at a high stress job. As long as I take placqunil and stay out of the sun, rest when fatigued, eat well and take vitamins I seem to do fine. I think the main thing is to listen to your body and take care of yourself. Learn to say no when you know you need to. Hope you do well
I stopped working last September. My symptoms were getting so bad my neurologist told me if I did not quit, I would have a flare that I may never recover from. I miss working and find sitting around the house incredibly boring. It would be different if I had the energy and mobility to do more around the house… I have noticed my symptoms seem to slow and some have even improved since I left my job but we are still trying to find the “right” treatment plan as new symptoms pop up. I too have applied for disability. We have taken a huge hit financially with my job loss and all the medical expenses and are at risk of losing our home.
One of the many things I learned from this, as Trisha said, you have to take care of yourself! I loved working, but I worked 6 days a week, 10 hours a day most days, and had a physically demanding job that required me to be in the sun much of the summer. I am now paying the price for that…and worse, so is my family. Know your limits, respect your body, and listen to your doctor
I got sick in April of 2008 and worked until October 2012. I worked a 40+ hour week. I was on my feet most of the day, under fluorescent lighting, exposed daily to sunlight at work, and surrounded by chemicals which isn’t good for lupus. I had extremely bad neck pain and headaches everyday. I also got low fevers and my arthritis acted up daily from being on my feet all day. My vision was blurry and I used to get so tired. I also have fibromyalgia. I’m surprised I was able to work 4and 1/2 years like that. I’m on plaquenil. I didn’t start to feel some relief until I quit my job. Less stress and I’m able to give in to my bodies fatigue now that I’m home. Instead of quitting I wish I could have worked only part-time, but my boss never gave it any real consideration, so I quit. My body thanks me for that. My mind doesn’t! I hope you continue to be well enough to keep working long enough to pay off your student loans, otherwise, listen to your body.
I had to quit my law practice. I was only 5 years in but had my own practice. I first slowed down because I wasn’t thinking clearly. Then I just had to stop because there was no way to guarantee I would feel well enough to get out of bed any get to court. The student loans are past due, bills are past due, but I am only functional about 3 days a week. And those days, I am only good until about 2 p.m. I have decided to file for disability. I have no other option. I wish you well. I know the stress of massive student loans.
I was diagnosed in 2003, but I had been sick for a long time before that. I was a teacher up until last year. I have been in a very bad flare for over a year now, or I probably would still be working. You have the most control over how long you work. Take care of yourself, rest when you need to, and be very careful with sun exposure. Stress is your worst enemy. Be kind to yourself.
I worked full time for more than 45 years in a very stressful and dynamic environment A few times I needed to go part time for a while but was always able to bounce back. I do have severe lupus with multi system organ involvement but have always had aggressive medical care with I attribute to being able to have a long successful career Not saying it was easy but I was able to push through
I have had lupus for about 14 years. I have worked full time and then some for the whole time (except for a brief stint at the beginning before I had been diagnosed and started treatment) and I also have 2 kids. What you are able to do, as others have said, is going to depend partly on how well you take care of yourself, and partly how the condition affects you. If you are doing well on plaquenil, that is great, and is reason to be optimistic.
I was dx about a year and a half into my Masters. I worked full time until 9 months after dx them took four months off for back surgery unrelated to the Lupus but all over my Mixed Connective Tissue Disease. After that I worked about 3/4 time. I was able to work some at home which was nice and it took me about 6 months longer to finish but I completed it this past May. I’m planning to teach at the community college level which will allow me the free time to take care of myself.
Don’t worry about what’s coming. Live in the present. Worrying does nothing but make you stress and that’s our #1 enemy. Just take it one day at a time. And enjoy life! Whatever it brings!
Ann I was wondering if you get lupus brain fog because you’ve been able to accomplish so much! I know perseverance and determination go a long way, but when I get my brain fog which is almost daily I get very confused, can’t remember things I’ve already learned and somtimes have close calls while driving (accidents) because the fog is so thick. Sometimes it’s accompanied by bad headaches and blurry vision. If you do get brain fog is it infrequent? Please tell us sufferers of brain fog your secret.
Ann A. said:
I was dx at 21. After the dx I completed a BA, MA, and PHD. I then worked full time in academia for 30 years. My studies and my work were at traditional and very large universities.
I retired in 2010 because of my health issues. I just completed an online MS program. If I were at the start of my career, I would want it to be one that allowed telecommuting.
I work full time which is 3 twelve hours a week. I first started with problems in the late 90's. I have started seriously thinking of a career change or going out of work on my short term disability for a couple of months. I no their is some help for student loan debt I just can not think of it right now. Remember every one is different. A friend of mine was diagnosed in 1985 when she wound up in the hospital started plaquinel and never had another problem till she passed away in 2004 in a car wreck.
I was diagnosed about 3 years ago. I was working full time, but had a bad flare and took 6 months off for it. When I returned to work, I requested a reasonable accommodation that included more telecommuting. I work for a large public institution, and thus it is covered under the Americans with Disabilities Act (any business with more than 15 employees is covered). I requested that I be able to come in a little later and to leave a little earlier, but to make up the time via telecommuting. I also telecommute one full day per week.
I will tell you that it was an uphill battle to get them to agree to this. It shouldn't have been this way, and now that it is in place, it seems to be working alright for both me and my employer. I try very hard to keep to my end of the agreement, and do extra when I can. That also seems to help.
I also try to get plenty of rest and avoid the sun, and take time off when I need to. I am 55 now and would like to continue to work until I'm at least 60. Some days I feel like that is possible and some days, I feel like there's no way. I try hard not to think too far ahead. The future is far more unpredictable than I can easily come to terms with, so I try not to think about it too much.
It's hard because I live alone and so there's not much help at home. My kids help when they can, but they have lives of their own. I also feel awkward asking for help from friends and family. It's just hard for me to do it all on my own.
this is a great discussion though so thanks for posting your question.
It's so different for each individual case. I originally got sick about 10 years ago. It took eight years to get a diagnosis. During that time I worked 50-60 hours a week in a physically demanding job. During the last year, I have cut my hours back to 16 hours a week. During rare weeks I will work a day or two more. In my favor, I started a web site a couple of years ago that now gives me a decent income. I have also finally figured out that my health has to come first. I take care of myself now, and really watch that I am not over-doing it. That alone has made a huge difference.
Thank you to everyone for your honesty and thoughtfulness. Ann A, you are inspiring. You too, Roxie.
I'm clergy. I can work from home at times, though when there are funerals, weddings, people on their death beds, sick, etc.-- its really hard for me to say "sorry, just not feeling well today." Obviously I need to be there. It's a balancing act. And yes, I work a lot, but I also have a congregation that really wants me to succeed and is willing to accommodate as best they can. I work as much as I do because I want to work as much as I do, though as my husband says maybe this is a blessing in disguise because it will teach me to delegate and foster a new generation of leaders. I'm not sure I'd ever call it a blessing but I see his point.
Of course this is all complicated by the fact that my husband found out today his PR firm is closing at the end of July so he'll be out of a job. Trying to take it in stride-- we'll figure it out. What's the use in stressing?
I've often thought I'd like to start a website, but I'm not sure how to go about it or what I would want the site to be about. I know this is off thread, but I'd love to hear more about what you did and how you did it.....website wise.
Roxie said:
It's so different for each individual case. I originally got sick about 10 years ago. It took eight years to get a diagnosis. During that time I worked 50-60 hours a week in a physically demanding job. During the last year, I have cut my hours back to 16 hours a week. During rare weeks I will work a day or two more. In my favor, I started a web site a couple of years ago that now gives me a decent income. I have also finally figured out that my health has to come first. I take care of myself now, and really watch that I am not over-doing it. That alone has made a huge difference.
I'm not sure if this is ok to post here, but after more research than I can tell you about.... I settled on a company called SBI or Site Build It. It's definitely more expensive than other web hosts but well worth the price since they truly do provide step-by-step help. For someone like me (I'm 54) with no computer knowledge whatsoever... well, if I can do it, anyone can. You can find out more at http://www.buildit.sitesell.com/
It's not get rich quick. It's actually a lot of work. But if you have knowledge or a passion, then there are others who would be interested in what you know. I'm a former daycare provider and I created a site for those who would be interested in starting a home daycare. It's at www.simplydaycare.com
I admit it took a little better than 2 years before I started seeing a decent income. I didn't realize it when I started the site how grateful I would be that I did it. Now, when I have one of my many not-feeling-so-well days, my bills will still get paid. And as we all know, less stress is better.
heymj said:
I've often thought I'd like to start a website, but I'm not sure how to go about it or what I would want the site to be about. I know this is off thread, but I'd love to hear more about what you did and how you did it.....website wise.
Roxie said:
It's so different for each individual case. I originally got sick about 10 years ago. It took eight years to get a diagnosis. During that time I worked 50-60 hours a week in a physically demanding job. During the last year, I have cut my hours back to 16 hours a week. During rare weeks I will work a day or two more. In my favor, I started a web site a couple of years ago that now gives me a decent income. I have also finally figured out that my health has to come first. I take care of myself now, and really watch that I am not over-doing it. That alone has made a huge difference.
Hi!, working is something that we all try very hard to do, but Lupus has it own mind -before this Lupus stuff started , working was something for me to relax . I was a waitress and enjoyed meeting different people from from different places. I have to say Lupus hit me all at one time, not allowing me to hold things , not allowing me to stand for a long period of time,having very bad pains all over my body , and not forgetting the noise level . It was very hard for me, at that time I would miss many days off from work , which the manager really try to cover my shift as best as he could but of course , I had to finally let him know I don’t think my body would be able to do the long shift -so I had to quite. That put me in depression . Am not the kind of person who want someone to take care me, I like doing things for myself and help others. Yes , I would say to you, keep working as long as you possible can!!! Just make sure that you relax on your off days, that is the most important factor of this Lupus stuff. It will get hard for you at times (but try not to let Lupus) beat you down!! The last word is always yours , your health is totally yours, and no one can make that choice for you!!! Strong and handle what you can, hope that this comfort you-smile…Beverly L.
Roxie, thanks so much for the info. I will definitely check it out. I'm 55 so I know what you mean about tech stuff. It sounds like an awesome idea and it's really great that you have that to fall back on especially now. Thanks again, Marti
Roxie said:
I'm not sure if this is ok to post here, but after more research than I can tell you about.... I settled on a company called SBI or Site Build It. It's definitely more expensive than other web hosts but well worth the price since they truly do provide step-by-step help. For someone like me (I'm 54) with no computer knowledge whatsoever... well, if I can do it, anyone can. You can find out more at http://www.buildit.sitesell.com/
It's not get rich quick. It's actually a lot of work. But if you have knowledge or a passion, then there are others who would be interested in what you know. I'm a former daycare provider and I created a site for those who would be interested in starting a home daycare. It's at www.simplydaycare.com
I admit it took a little better than 2 years before I started seeing a decent income. I didn't realize it when I started the site how grateful I would be that I did it. Now, when I have one of my many not-feeling-so-well days, my bills will still get paid. And as we all know, less stress is better.
heymj said:
I've often thought I'd like to start a website, but I'm not sure how to go about it or what I would want the site to be about. I know this is off thread, but I'd love to hear more about what you did and how you did it.....website wise.
Roxie said:
It's so different for each individual case. I originally got sick about 10 years ago. It took eight years to get a diagnosis. During that time I worked 50-60 hours a week in a physically demanding job. During the last year, I have cut my hours back to 16 hours a week. During rare weeks I will work a day or two more. In my favor, I started a web site a couple of years ago that now gives me a decent income. I have also finally figured out that my health has to come first. I take care of myself now, and really watch that I am not over-doing it. That alone has made a huge difference.
