View Full Version : any people who have careers or in school?

06-25-2008, 10:53 PM
I want to hear from people are in school or have attempted to go to school, and from those who have or have had a career and how having lupus affected their lives. I am in school now and having a hard time imagining being able to complete atleast five more years and going into my chosen field which is pharmacy. I am wondering if I should quit and try something else that wont require so much time and studying :?:

06-25-2008, 11:42 PM
I'm a stay-at-home mom with 4 kids, ages 10, 5, 4, and 8 months. That's my chosen career. I'd certainly not have chosen such a full plate if I knew 10 years ago that I was going to get sick. School or a career and no children would be much easier. I can't call in sick- EVER. I don't get to take 2 weeks vacation in the summer. No matter how sick I am, someone else needs me and I have a hard time finding time to take care of myself. That said, the rewards are more than worth the stress and hard work that having a large family brings. We may even add one more baby next winter if social workers call us for placement of the baby's sibling(birth-mom is pregnant right now). It all depends on how I'm doing at that point in time.

06-26-2008, 12:43 PM
Hi jaidani,
I was in school last fall and working part-time when my lupus it me hard and I had to both quit school and my job. I was in bed for about 4-5 months before I was stabilized and my symptoms abated. Now I am at home managing my lupus and raising my children. I may in the future return to classes but rigt now I have no concrete plans to do so. Learning how to manage my lupus and listening to the signals my body sends me is my full-time job. I try not to look at all that "IT" has cost me because that just causes stress and stress affects my lupus. So I just merrily plod along with my walking stick, my wide brimmed hat, tons of SPF50 sunscreen and my jacket that has sunscreen in it.

Hi Jennyfoo, I am an adoptive mother also. We have 10 children total with only six at home now. I have three birth and seven adopted. Welcome to our Lupie Family. :D


06-26-2008, 05:20 PM

I have lupus and fybromyalgia. When I was younger, I didn't have it too bad. I completed by four year degree. Never went the fifth year to become a full time teacher though. I probably could have worked
as a full time teacher for a while if I had pursued it. I accommodate my lupus by working as a substitute teacher. The pay isn't anywhere that of a full time teacher, but I can work the days I feel like it. Good luck!

06-26-2008, 05:24 PM
I am an attorney with a very busy employment litigation practice. Prior to being diagnosed, I was always getting sick--since childhood--so career has been tough, but I have been doing it for nearly 21 years. In 2003, prior to being diagnosed or even suspecting that I had any major medical problem, I just noticed I couldn't keep pace anymore--also my mom had passed away and my dad fell ill with Leukemia--

I went into semi retirement. Moved my practice to my home and took only attorney referrals. My health continued to decline and I was diagnosed after my doctor ran an ANA and various other tests. Since then, it has been a constant struggle to maintain my flares and try to go into some form of remission.

I am finally throwing in the towel. I am convinced that my schedule and stress of litigation against Fortune 100 and 500 companies is doing me in. So, I am winding down my case load and will be done practicing by next Spring.

06-26-2008, 08:08 PM
Hi there. I am currently working. I am a nurse. Unfortunately I have lupus, crohn's and intracranial hypertension. Everyday that I can wake up and go to work I am grateful. I have been working for 2 months now, after being off for nearly 2 and a half years, and my body is starting to get worn down, but I am trying very hard to hold on. I am only 44 and I am just not ready for disability yet.

06-26-2008, 09:07 PM
I kinda figured after my last semester that I might not make it I have a three year old and not much family around. I have noticed that I feel better if I go to sleep as soon as I get the urge only that is rarely possible.I think I will try to finish my first degree with the help of a few online classes but wanted to know what i could realistically expect thanks for the posts

06-26-2008, 11:30 PM
Hi I was at university couple years back and got a degree.
I am currently employed full time, and busy completing my honours degree.

I never had to stop doin any of these due to my illness, thank god

06-27-2008, 10:44 AM
Hi there,

I've had lupus since I was 13, that is a total of 22 years now. I also have fibromyalgia. I completed my BA and my MS. Honestly, my BA took a long time. I had some semesters I could only handle one or two classes. For my MS, I did the majority of it online. I'm actually enrolling for another graduate degree this fall. Again, online classes. Those work best for me, I can take my laptop right into bed with me, and I can do my work whenever I can, even if it is 2 in the morning. One tip for you, register your disability with the school. That really assisted me! Most teachers gave me extra time on tests, extra time to turn in assignments, and would ask if I needed any other accommodations.

I'm working full time as a behavior analyst for children with autism. Been doing this for 14 years now. I have been very honest with the company and for the days I can't seem to get out of bed, I save up tasks that I can do from home. They have been very flexible.

06-27-2008, 01:51 PM
I do not work, do not go to school, do not do much of anything now ...but I am old :-)...was a stay at home mom, then as the kids left I was a stay at home wife. I thank my lucky stars every day for my hubby and the life I am able to lead thanks to him.

I don't know how anyone with lupus can hold down a full time job or go to university. All of you who do simply amaze me. I am on my feet now at my computer and giving you all a standing ovation!

06-27-2008, 02:07 PM
I recieved my degree before I got sick. However, I first left my VERY lucrative bartending job due to the physical stress on my body when I got sick. They had no idea what was wrong with me, but I still couldnt feel well enough to work.
I felt better for a bit (was on a TON of pain meds, though), and went to work as a social worker advocating for parents of children with special needs. My degreee is in social work. After a year, I was hired for a more lucrative position, but had to leave both positions jsut after I was hired (was there a year total only) due to meningitis/shingles, etc.
Was out of work for a couple of years until last summer when I was feeling GREAT, thought all of this boloney was behind me, and applied and was hired to be a home inspector (I had done this job when I was first out of high school - no hubby no kids). I was thrilled because I could really make my own schedule, and that would be great IF I started to feel sick again, etc. I was hired in January, and - as I was beginning to flare again - I REALLY pushed myself, hoping my flare would go away - but, as I was still un Dxd, I was still UNTREATED. I ended up resigning after 5 months, and I was really, really upset about it. I felt like I had joined the land of the living again, and it was such a LET DOWN!!
Now, Im being treated, and I think if I continue to improve as the Plaquenil settles everything down, I may be able to work part time. But its really a wait-and-see game. I LOVE to work, but as you all know - there are days when I can barely make it to the bathroom!! Hard to commit to anything with this disease, you know? I think alot depends on your being treated or not, and how well your meds are affecting your flares - everyone is different.
I hope things start to get better for you - they will in time - jsut have faith and hang in there. Keep posting!!

06-27-2008, 05:02 PM
This post ended up being kinda long-- sorry!

I am a PhD student. I took 5 years to get my B.A. and 3 years to get my M.A. I'm one year into the PhD and I have at least another 3-4 years before I'm finished. I became seriously sick during the summer before my 3rd year in undergraduate and was diagnosed within about 6-8 months (I'm one of the lucky ones to get a quick diagnoses). School can be really tough with lupus but as another member said, take full advantage of disabled student services. I've found that in addition to extra time for tests and things like that, these programs can also help you get exceptions to "normative time," i.e., how long it takes to get your degree. Many schools, especially grad programs put a limit on how long you can take. I was surprised by how much disabled students could help me. Depending on your school, you may be able to get priority status for things like campus daycare, which could make life a little easier.

I also TA at the univ., so my "teacher" advice is to make sure your profs and TAs know what is going on with you from the beginning of the course-- and don't assume disabled student services will inform them. I often have students approach me once the world has crashed down around them, for whatever reason, and they would have had a much easier time if they approached me earlier. I should take my own advice though, since I tend to do this too. It can be hard (and exhausting) to tell people about having lupus and what that means.

Another area of study may also help. The sciences (like pharmacology) require a lot of lab time/time away from home. Social sciences and humanities (my area) is much easier to study when you have a chronic illness-- lots of sitting at home reading or writing. But then again, it usually doesn't pay the bills. You've got a lot on your shoulders, having lupus, a baby, and little support network-- you should be proud of yourself for getting any schoolwork done at all! I've been very lucky and privileged to not have to worry about all those extra things.

Best of luck with your studies.



06-28-2008, 09:16 AM
What an interesting post this is to read! We are so varied in our lives, yet so linked. It is wonderful to have each other to learn from and lean on.

I was diagnosed at 50, after I'd completed a BA, MS (Human Resources) and was almost through a second MA in Ethics. I work very full time - 40-50 hours a week in a management position. Forutnately I have a fabulous staff who recognize that there are days I do NOT feel good and they steer problems away from my office those days. (They are SUCH a godsend!)

Jaideni, I think you're learning from this post that each of us is very differnt in what we can do and what we can accomplish. I did switch from a busy healthcare environment to a somewhat slower paced college environment shortly before I was diagnosed, I think I'd have more problems if I'd still been in healthcare - it is so fast paced and stressful.

If the coursework for pharmacology is too heavy a workload, look at other degree programs - talk to your Advisor at school - AND talk to your ADA coordinator at school as well. You may find that pharmacology could still be a fit because it is an area you love. Maybe it will take a year or two longer to get there. Or you may decide that another field would be a better choice.

Whatever your decision, be sure it is the one that your heart leads you to. You may have less energy and stamina due to lupus, but I've learned there's little I cannot do if my heart says I MUST do it.

"Believe in yourself. You gain strength, courage and confidence by every experience in which you look fear in the face. You must do that which you think you cannot do." (Eleanor Roosevelt)

07-01-2008, 08:42 AM
Hi ya...hey, Jaideni,

Whatever your decision, be sure it is the one that your heart leads you to. You may have less energy and stamina due to lupus, but I've learned there's little I cannot do if my heart says I MUST do it.

Wonderful words from Hatlady, wonderful advice...

Live life...Jaideni, worry about the ifs, and buts when and if they every come to be. No IT story is the same..yours will be different. Go for it...

Keep well,

07-08-2008, 11:44 AM
Very well said! Lupus may slow us down, but we can still do things at our own pace!

I finished my Masters last year, but it was mostly online, which made things easy. My BS would have been harder if I had been suffering from lupus at the time.

I've just found I need to pace myself. I think that is key. I can't work full time and go to school full time. But I can work and go to school part time! I may not have a perfect house, but we survive. I take advantage of good days, and rest when I feel crappy (like today!). It is frustrating since I used to be a go go go girl and never had problems getting things done, but I just changed my perspective. So if you really want to go to pharmaceuticals (sp?) you probably can but just need some help and extra time!

Good luck!

07-09-2008, 04:43 PM
My career is Engineering. 20 years ago, I completed a degree in Chemical Engineering. About 12 years ago, I finished a Master's Degree. After continuing to work and having 2 great kiddos (who are now 11 and 7), I continue to work, but I also wonder for how long. Last year, I was having a stinging sensation in my head and thought for sure I was dying of a brain tumor. After MANY doctors and a long road to a diagnosis (like so many of us have had to face), they finally found a sky-high ANA which led to other tests and to my lupus diagnosis.

Right now, I'm continuing to work full time. My boss is a cancer survivor with crohn's disease and I think that gives him a unique insight into my recent diagnosis. He's very supportive of my time away to take care of appointments and lab work. Because of his supportiveness, I'm able to manage right now. But, I think about it daily. Can I keep going? For how long? I've noticed my flare ups coming closer together and wonder if it will reach a point that I have to get formal accomodation at work, or go on disability. I agree with the previous post who said, "I'm not old enough to be on disability". I feel that way too. I'm only 42. I don't feel that I'm ready for disability. But lupus may make me ready before I logically think I should be there.

Good luck with your studies. I thought the suggestion to take on-line courses was a great suggestion. Maybe you could take most courses on-line and still be able to finish your degree.

07-16-2008, 09:21 PM
Another thing to consider as you make this decision about your career...

since you may have some lupus related health challenges, it may be wise to make sure you have a career that allows you to make enough money working part time at a job that is not too physically challenging. And pharmacy seems to fit that.

I am not dx'd with lupus, but have recurrent health challenges. I am so so glad that I decided (long ago) to get the education I have. It allows me to earn a living without working full time. And I love my job (working with children with disabilities.)


07-18-2008, 08:27 AM
Dont give up, you have to realize that there are going to be days when you cant go. i went to the school's health/disability center and found out what i needed to give my teachers in case i missed more days than other students, i had to have my doctor fill out a form and the school typed up a nice letter letting all my teachers know that extra abscenes were due to my disability. that really helped out. I did that after i got a cold shoulder from one of my teachers, i was about to put up with someones elses ignorance of not understanding lupus. I just finished my master in social work ive been in school a total of 7 years sometimes full time, and sometimes part time, but dont give up if this is your dream! I plan on working, but that will be another story i will let you know about!
hope this helps! :wink:

07-23-2008, 12:15 AM
Don't give up; all of us are different and have different life stories. I am 41 and many days I feel as if I am 70. Especially when I am shuffelling instead of walking.

I used to work 8+ hour days, run, swim, and workout at the gym; those days are gone and walking is enough. The more auto-immunes you have, the more challenges you may have in your life. My dr told me to find a part-time job; after being terminated over 2 years ago while working in an engineering firm drafting and designing landscape and sprinkler designs due to my illness and being "emotional."

It is a financial hardship to work part-time and I feel as if I am a burden on my family; I hate it. I would love to work more hours than I currently do; at this time with several auto-immunes kicking my butt, it is physically impossible. I have also noticed I can't remember names and forget tasks that I have done over the last 2 years unless I write down the instructions for everything. The neurologist that I just saw told me I had amnesia and that it was typical of Lupus patients with memory issues. I feel guilty because we really struggle and yet I wish there was a way out of it. I have a lot of respect for those of you that are working and/or going to school. Wow!!!! My hats off to all of you.

Faith 8)

07-27-2008, 04:25 AM

I was diagnosed in my last year of high school and went on to university. I've managed to study full-time and work part-time on campus and now I have one year to graduation. I also plan to study medicine afterwards. I believe that nothing can stop me from achieving my dreams, not even lupus. But I have to add that I've been very lucky in terms of flares. The last one I had was during finals last semester and I managed to make up once I got better. I have a very understanding boss too.

07-27-2008, 06:49 AM
I think that is the key here...how often and how long our flares last. Last summer was one of the first times I was without symptoms in YEARS. I thought it would last longer, and went out and got an excellent job as a home inspector. Went to NY for training, started being able to wake up and go to work like a normal person, make money again, and then....BAM! I began getting symptoms again. I have always had so much energy, and graduated from college with high honors, while working and being a Mom....but when Im in a flare...it is physically impossible to much of anything....
I ended up having to leave that job, as for one, I couldnt stay awake long enough during the day to be very productive and also the pain was unbearable. I was without any treatment at the time, but, regardless, I still wouldnt be able to predict WHEN I will feel OK and when I wont. The unpreductability is key....And some have flares more often or that last longer than others....Everyone is so different with this disease, you know?

07-28-2008, 07:41 AM
I say do it while you can. I want to change careers, but my kids are teenagers and going to college themselves soon, or already there, so it is
not possible, and given my health situation at the moment, it is not possible. Do it while you can, they make awesome money, and you can set yourself up really nicely for later in life.

07-28-2008, 09:58 AM
I quit/was asked to leave my job the first week of June. I am really just beginning to understand lupus and have yet to receive a formal diagnosis... and that is partially my fault for not being as actively pursuant as I should be. I'm just tired. I have similar concerns about school. This will be my first college experience (I'm 23) after 6 years of working as a Cert. Nursing Assistant/Medical Assistant/Pathology Technician. I'm afraid that the work load will be too much. That I'll cave in to the anxiety and fatigue like I did in high school. I'm also concerned that my fiance won't be as supportive as he could be. He is a wonderful, caring person but he finds a lot of this hard to, I guess you could say, hard to believe. It's an invisible illness and I can see how he could be wary of it. I come off as being lazy and he gets resentful. I understand his feelings 100% but there is really no other way to explain my feelings to him other than just to say "I'm tired. I'm sorry. I want to help you, but I just can't." Now that I will be taking on school and will be home by 1 o'clock everyday, I'm afraid that he will expect the house to be immaculate since I will have "all this time on my hands." I also have well-medicated bipolar disorder with some aspects of ADD that make school a challenge. So it will take me longer to complete tasks even though I'm told by others that I'm "brilliant" and should do something more with my life. I guess frustrating is the right word for it all. OK, done venting! Thanks!


07-28-2008, 01:53 PM
Hey Bridget -
Maybe your doc can put you on some meds to control symptoms so you wont feel so lousy all the time...
I understand about people not understanding your illness....it is very common...I am very fortuanate, as my hubby has NEVER doubted for a minute that I am sick...He saw me before all this happened - as a single mom, working nights and going to college full time during the day...He knows Im not even close to lazy, and that if I say Im tired, then I AM TIRED....Maybe you could get your fiance a book (The Lupus Book by Daniel Wallace is best) to see that though you may not LOOK sick - you ARE sick, and unable to keep up with what non-ill people can do.
Do you think this is the best time for you to be starting school? Mabybe you should wait until you are under a docs care, so your not as symptomatic. You say you have not been officially Dxd...does your doc think you have lupus? Are you on any meds now?
Whatever your "status" may be...please know you are always welcome here....Dxd or not...we understand how you feel....
I hope you find some understainding soon, and that you feel better as well.
Keep us posted as to how your are doing, OK?
Love Lauri

07-29-2008, 06:01 AM
Thanks Lauri. I'm not on any meds (for lupus) as of right now. My doctor said that she thinks it's more of a Chronic Fatigue/Fibromyalgia type thing because my tests come back almost completely normal (except for the CRP with was 17.something.) I really don't feel like that's the answer, especially because there are no real effective treatments for those conditions. I'm on Provigil to fight fatigue and I take ibuprofen for pain. I also have some other psych meds to treat bipolar which are working quite well. I am thankful for this because bipolar is just as scary to me as lupus. My mother had severe bipolar disorder and commit suicide last June despite being closely monitored and medicated. I am just like her in every way, so it's important for me to take bipolar seriously. This whole lupus thing just throws me a curveball.

And as far as the school thing... I've paid the application fee 5 times for college and haven't gone through with it in the past. This time I'm gonna do it if it kills me. I have to. And I will. My father is supplementing my income enough so that I can go to school full time and not have to work. There is no better time than right now. I have no kids and no job to worry about. My fiance makes enough money that when coupled with the contribution my dad is making, we can live fairly comfortably. So I can't give myself the option of NOT going to school or I will regret it forever. Especially since this is a progressive disease. The next time I have the oppurtunity to go to school like this, I may be even sicker. I'll just suck it up and get it done because a degree will make it possible for me to work part time and still make enough money to live. Without a degree, I'm working 40 hours/week til I die... to put it bluntly.

I think I will buy him that book "The Lupus Book." He isn't a big reader so I'll read it first and highlight the stuff I want him to read. Then it won't be so DAUNTING for him. He's got a bachelors in Biology and two Associates, but he won't read a stupid book. Go figure! LOL.

07-29-2008, 07:26 AM
Not meaning to hijack your thread, jaideni

Bridget..there are drugs to treat the symptoms of fibromyalgia, such as Lyrica, combined with Mobic, Flexeril, Elavil and Lortab.

Lyrica is used to control seizures, treat nerve pain and fibromyalgia. It is the first FDA-approved treatment that can help relieve fibromyalgia pain

Lortab is a narcotic pain reliever (aceteminophen & hydrocodone)

Flexeril (cyclobenzaprine) is a muscle relaxant. It works by blocking nerve impulses (or pain sensations) that are sent to your brain

Elavil (amitriptyline) is a trycyclic antideppressant. It is helpful for improving sleep. Elavil has been found to lose effectiveness over time. Other tricyclics include desipramine (Norpramin), doxepin (Sinequan), imipramine (Tofranil), amoxapine (Asendin), and nortriptyline (Pamelor, Aventyl.

Mobic is an anti-inflammatory.

Sleep and exercise play a very important role with fibromyalgia symptoms. When I get good sleep from flexeril and swim for exercise, I feel almost wonderful. My wonderful.

Daniel Wallace, M.D. also published a book on fibromyalgia, called All About Fibrimyalgia. Check that one out too.

I think it is important to look for wellness everywhere, in many books, in one's story, in one's experience...trial and error. You'll find the right combination.

Enjoy this day,

07-31-2008, 04:54 PM
oh my gosh, I went through that whole fiasco at the start of my freshman year. (i'm a junior now.)
Don't be afraid. The key is to be flexible with your major. Make sure that if you decide not to be a pharmacist you have a back up plan, so you're safe and secure. Don't be hasty to stop pharm becuase of lupus though, unless it really really is impossible for you.

I want to go to med school, but i'm not 100% confident i'll get in, or be healthy enough to contend. I was a biology major, but i was afraid of getting too sick to finish school or go to grad school and end up without a good job. Now my undergrad is in nursing, so i'm sure to get a job and much needed health insurance when i graduate. I went into remission (thank god), so I'm still pushing forward for the med school.

You can totally stay in school, as long as you're well enough and have the motivation
good luck!

09-15-2008, 02:35 PM
I have started school. I droped my two on campus classes already because of the pain of walking and the overwhelming sleepiness. I still have five classes three online and two telecourses so I still have a full plate but I think I am handling it well so far. I haven't decided yet if I should change my major although I have been thinkinn about what else would I be interested in doing. So far everything I think of still reqires atleast five more years of school. Anyway thanks to everyone who posted and left me some wonderful advice and good luck to all

09-16-2008, 06:58 AM

jadenei, that is such fantastic news! It does take time, and 5 years looks so long right now, I'm sure. But just think - it is only a few years.

I once had a friend complaining about how old she'd be in 6 years when she finished school, she was going back as an adult. I asked her how old she'd be in 6 years if she didn't go to school? :roll:

Take your time at it, pace yourself. 5 classes at once is a heavy load! I don't blame you for dropping the two on campus - all that walking can be dreadful.

Much luck and enjoy the studying (would you believe research is always my favorite part? :) )

09-16-2008, 05:33 PM
Thanks Hatlady! You made a good point. I might have to steal that one soon :lol:

09-23-2008, 08:09 AM
I am 22 and currently go to school full time as well as work. I was recently diagnosed in march. I took a safe route, I have a sit down low stress job for a life insurance company. (paper work). I stopped going to college at night on campus because i was afraid i would have a flare and miss school. so i decided to do online classes. online classes are better but require alot of discipline. I start my program for cardiovascular in Jan, and i will have to go to school from 8-3, so i will have to adjust back to the campus life. but i wish you the best.

You can still pursue your dreams just take it one day at a time.
laughter is the medicine for your worries and pain, watch funny movies! :lol:

09-23-2008, 10:50 AM
@purplepinkgrl Thanks! I wish I could do the sit down job thing, but a few months ago I started having pain from sitting. Sucks! Cant do anything comfortably anymore and cant stay woke long enough for it to even matter. Anyway, Good luck on your studies.

@bridget Hope you feel better
@ oluwa thats the point of these thing right? no apology necessary

10-10-2008, 09:43 AM
I currently work for an environmental policy institute full time. Thankfully, it's a wonderfully supportive environment, so I can work from home whenever I need/want regardless of the lupus. I've now worked out with our director that I will officially work from home on Fridays and it seems to be helping a bit.

I'm also starting my Master of Public Administration in January. I found a program that meets once a week near my job and not too far away from home. I am a bit nervous about it.

11-16-2008, 05:23 PM
I'm currently studying for ym BA in Economic History and Economics, was gonna aim for a high powered graduate scheme type course, but i dont think i'll manage, i struggle to get into Uni most weeks. For my health i think i'll stick with a part-time or job share when i graduate, cause i don't wanna get worse just because of pursuing something. I had a PT job in a call centre for a bank and the way the stress of that made me feel ill has put me off it for life lol.
Im not sure exactly what I'll do but im lucky that at 19 I do have a boyfriend who intends to stay with me in the long run, looks after me and supports my choices, so i've got that support
I fully intend to complete my degree as im just about coping, but after that who knows :S

07-30-2010, 01:19 AM
Hey everyone.

I'm a 23year old female two months into a lupus nephritis diagnosis and on the world of pills. I'm currently doing an honours degree in BSc BioMathematics and the memory loss and brain fog is so not helping, I really just want to finish my last 6months, although I know it will be hard but I came so far already. At least I have comfort now knowing that i wasn't being neverminded, lazy and not using all my potential when I was studying towards my undergrad degree in BSc Mathematical and Statistical Sciences. Because at that time my mind felt sharp as a fiddle but the marks didn't reflect that and I'd beat myself up about it, i also just thought I had a weak immune system and that's why I got the flu really badly after every exam period...I was reading through the posts and got a lot of good tips, like going to the centre for students with disabilities, I actually did have an appointment to go in the week, before I read this but then I was out with backpain for the day so I missed it.
It's nice knowing there are other people who were able to work and study and have very demanding and stressful jobs. I wanted to go into the Epidemiology field, but I don't know how I'm gona work around that now because being around people with infectious diseases isn't really a good thing, lol...but i'm sure i'll find a way to adapt. My mom told me to not let the Lupus get me down and stop me from doing something that I enjoy and that maybe i'll still be able to go do field work just with a mask on....lol, that would be weird, being in a meeting with a mask on....my main problem now is that alot of our lecturers and bursary schemes are calling on us now to apply for bursaries to do our Masters, i'm not even sure if i'll be able to finish my honours let alone Masters, but i'll apply for the bursaries and see what happens in the next few months...one thing i'm not clear on is is how easy is it for people with SLE to travel around etc etc....because that's a perk in my field, going to different countries etc..and I wanted to know if i'll be limited in that respect

Linda From Australia
07-30-2010, 04:28 AM
You could pull back and not take the opportunities that have been offered to you. Choose another field of work and do things that will make your life so much easier. But will you be happy?

Imagine if you pulled out of all your plans, just incase things got worse or because you are just waiting for things to get better and surprise surprise, you go into remission for years and you realise you have made some huge mistakes and missed out in an awsome life.

Personally if it was me, I would continue to make plans as if I was not sick and when things get bad, make some adjustments for the short term. If your future job takes you to other countries and you don't cope, then change your plans. You can always see if you can go back to that job when you feel better.

Don't be one of these people who say "if only". Life is so very much more precious now that you life is so delicate. After all my rambling, what I am basically saying is ... make a HUGE effort to to improve your health and life style so you can do the things you want to do. If you give in the the "I'm sick and therefore cannot do such and such," then you probably will not do those things. If you adopt the attitude of I tried and it didn't work out, then there is no regrets, just heaps of experiences and learning.

Go for it, look after yourself, take some breaks, but NEVER - NEVER - NEVER give up on your dreams and desires. You just have to work even harder to be healthy so you can do some extraordinary things!!!!!!!!!!!!!!!!!!!!!!!!!

07-30-2010, 05:27 AM
Currently, I work part time at Home Depot (bookkeeping - I get to sit around and count money all day, lol!) It's nice because I'm pretty much isolated all day in a locked vault... meaning I don't have to run around on the floor and be bugged by customers. If I need / want to, I can lock it all up and go walk around for a bit, talk to fellow associates and get some fresh air. I pretty much work at my own pace. This is an ideal thing for me at the moment because I'm going back to school full time at the end of this month for nursing school. I've managed a BS in healthcare administration so far (no luck on the job front there due to the crappy economy).. and just finished up a certification as a Medical Assistant. Passed my state certification. Was going to work for a year as an MA, waiting for the nursing program, but they called a few weeks after my exam to tell me they had a spot ready for me now if I wanted it. I couldn't pass it up.

I plan to work as a nurse for as long as I can... Hopefully, my bachelor's will do me some good in moving up the ladder there and I can get into an administration position that won't be as physically demanding. I can see myself maybe getting into some kind of consulting type area where I could work from home at some point. I'm hoping that all of this will afford me the opportunities to deal with my disease as it progresses. So far, I've been immensely blessed to have instructors and bosses who are very understanding of my illness. I hope my luck continues in the future!

07-30-2010, 05:44 AM
If we just continue to take the two steps forward each day and not care about the three steps backwards we can suceed. After forty years of doing it I know we all can.

Hope springs eternal; without it we fall


07-30-2010, 06:26 AM
You are so right Nonna. We did not ask for this diease as many other dieases but if we are to continue with life and be happy we have to accept the pain and the flares as part of our life. We enjoy the good days and deal with the bad and then thank God we are still alive to enjoy both. I applaud all of you who are working so hard to accomplish your goals in life and i wish you sucess in all fields. I was a stay at home mom for almost all of my kids (3) for their young lives and then i took a night shift job in a nursing home for 21 years which i really loved till i got hurt and had to have 2 serious back operations. I always wanted to be a nurse but money and time with the kids detured this dream . But being a care giver to my residents and my children and now my grandchildren has been my life. I was diagnosed with lupus and myositis at age 58 that was three years ago. I am retired and so is my husband and we are helping to take care of our two youngest grandbabies who are 7 and 3 and it gives me joy. God bless all of you and hope all of your dreams come true. Love Bonita