Careers/Family and Lupus

General
1

Hello guys :3. This is my first post here, I just joined about a week ago. Im so glad this site exists. You all are lovely and welcoming people and the feeling of not people alone helps so much. Short introduction. So, my name is Melisa, but I prefer to be called Mel. My primary medications and supplements right now are Calcium w/D 600 twice daily; Myfortic 540 mg, twice daily; Naproxen 500mg, daily; Plaquenil 200mg, daily; Inderal 60 mg daily, Prednisone 30 mg, twice daily, Prilosec 20mg daily and nitropaste prn.

Im 17 currently, and a senior in high school. Im in the middle of a flare that has been going on since roughly July 20th. Its been a struggle doing anything and it kinda sucks that I missed out on my last month of Summer buuut Im trying my best not to let it depress me too much. Ive been in this fling with Lupus since I was 13/14, properly diagnosed at age 14.

Well anyway. Being a senior and getting into the whole college thing, Ive been university hunting lately. For me, one of the key factors in where I go depends on what I wanna do with my life. Clearly I need to go somewhere with a major of what I'll study lol. And yes, I know lots of people change majors throughout but that's not going to be me. Once I figure out whats best for me. I was always sure I was gonna study biochemistry, minor in Spanish. And heck, I still might. But the plan was to go to medical school and continue on from here into 4 year long residency, and 4 year long specialty training and even maybe a 2-3 year sub specialty afterwards.

Now, after talking with a few doctors and my rheumy specifically, its not looking very probable. With the doctors Ive spoken to, the hours during residency are ridiculous. Many of them sleep at work here and there, they're on call 24/7.. basically its no rest. And I kind of need rest, like if I dont I'll crash and end up in the hospital. Which Im sure many you lupie buddies are familiar with. Id be 26-30 at that time. So then the next issue would be a family. There is absolutely no way I could even think about having a family whilst training to be a doctor and managing my Lupus. It would be too much for me.

Grr, sorry for this super long post. I kinda needed to vent as well it seems. Im gonna have a second post following after this now, lol. Thanks for listening everyone <3

My general questions are: What is your job situation like? How is it managing Lupus? How many hours do you work/rest a week/day? Do you have any children? And lastly, if you're married, what does your spouse do and how does scheduling work out so that you're supporting each other? Im a little ahead of myself this would be decades down the line for me, but Im curious and it would be comforting to know.

2

Hey Mel,

Your life sounds much like mine. I was born with lupus, grew up with it, made a few serious career decisions as each one looked improbable. First, like you, I wanted to be a Dr. I was told the same, I'd never make it through residency, and it would worsen my health for life if I even made it through a few months. So then I chose to be a nurse. I was in the hospital so much, I studied the nurse's aide manual at age 13/14 and the nurses put me to work. They won't let you write the test for nurse's aide until you're 16, so I did that at 16 and passed. I was away from shool more than I was there, but I was still getting B's. The principal (in US I guess they are called a Dean?) came over and told me I couldn't return due to my attendance record. So my next option was school by mail/long distance learning. That was before the internet, which is how it would be done now. I worked as a nurse's aide at a nursing home, but got fired due to absences. So next I thought I'd want to be an interior designer like my sister. I studied for a year for that, then she told me that everywhere she goes, they have pets. I can't be around pets, so another heartbreak to overcome, and had to change plans again. At that time, I got engaged (age 18) because I had finished high school and part of college, and already had been in the working world. I raised 2 girls, and I had 3 home jobs at all times, so I was able to feel productive and that is a great feeling.

I think all the questions you've asked will vary depending on how sick you are. All of us just learn to adapt. We fall in love, and depending on our husband's job, hours and our own strength, we do what works for us, or we try different things that may not work, and keep trying until we find what works for us. We may have to adapt from week to week or month to month. How you support each other will depend completely on your relationship. Some things just can't be planned in advance. Just know that everything will work out, even if you are not cured. As much as possible, try not to worry about the future. That's borrowing trouble that you don't need. Just worry about today. "Do not worry about tomorrow, for tomorrow will bring problems of its own" is a scripture. You can plan your course of action, then work with university counselors on lessening your classes if you need to adapt to your body, you can take some classes online to make it easier physically. Plan for the future, but it does no good to worry about it. Worry and stress makes lupus worse. You can still have happiness and joy with lupus, even though you will have hard times too. The way I see it, because I have such hard times, I know when I feel better and the good moments are even more sweet and appreciated. Those who don't have illnesses like ours, they don't appreciate their good times, or might not even know they are having good times, may not appreciate their health and abilities. So we wouldn't know the good, unless we experienced the bad.

Best wishes!
Sheila

3

Only a very new (ish) Dx myself so have no insights to offer as yet. I am (was) 2 months away from Graduating as a Nurse. NOT looking too possible right now; but maybe next year I can re do my final semester & see where I may be able to manage work.

I really just wanted to extend my very best wishes to you for the next few exciting years of your young life.

I hope you are able to manage & balance your Lupus symptoms, continue your education & training & enjoy at least every other second of it all. If you have Medical advisors you respect - listen to them & do what you are advised to do. Dont think the strength & resilience of your 'youth' will allow you to push too hard & fast in all directions. Look after yourself as best you can at all times.

Kind Regards Kaz

4

Mel

What a beautiful young lady you are : )

I have a 17 yr old daughter, and an 18 yr old son who are both seniors just like yourself. I just turned 50 in April and was diagnosed with Lupus in June. It was a shock to me, but it is what it is. I am underemployed, and I'm at a crossroads right now: Do I keep working, change what I'm doing or retire? I wasn't ready for this now. I just remarried last year, and this isn't the way it was supposed to be. But, I find as I accept God's will for me, and not put mine in the way it is an easier way.

Have you considered research or teaching in the medical field? One thing I tell my son - you don't have to decide it all right now. I've suggested he take general classes right now and take some time to discover what he wants to do.

Take one day at a time right now : )

Trisha

5

Hi Mel…

You have some very thoughtful questions…and I admire your “looking ahead” though I do agree with several of the others who have replied to you…that ultimately those of us with lupus do live one day at a time. However, having said that I would like to answer your questions more specifically. First, my husband was 20 yr Marine, so I never really had to fully support myself and boys on my own. He is a retired vet, with 100% disability now…so I do not really HAVE to work even now, though I do contribute some even today…



I have had several careers over the years…



I was a theatrical and tv/movie costumer for 18 years…mostly before my boys started middle school. This was a tough job with long hours on varying days…I cannot do it now, though I tried after I was medically retired. Hours too long, days of work too unpredictable…as well as some travel. My eyes have gone down hill over the years and I cannot sit drawing and or sewing very long bc of lupus pain. I have SLE. Money was okay but Unpredictable feast or famine. Did not provide even 20% of family income.



After costuming, but before lupus diagnosis, I became a middle school teacher…going back to college for teaching certificate…30 hrs over 2 years. Taught 6th grade for 5 yrs., then 9 th grade for a year…end of the year had a mild stroke (a symptom/side effect of lupus) just after my 50th birthday. Medically retired a year later…unable to manage long hours prepping, teaching, attending meetings and events. So, if you look to teaching…look at part-time…some community colleges and/or colleges hire part-time. Remember though the semesters you do teach, may require some long hours both in the classroom and out. You might look at part-time tutoring. A friend was a 6th grade teacher in math and social studies for several years, but when she quit to have children she tutored on her own schedule at $20/hr.



I tried about 18 hr a week of retail work in a fabric store once I was well enough after the stroke. But, even that was tough; still did not contribute much to family income and no medical benefits. Hours were flexible, but I was still tired at the end of the day; tiring interacting with many people during those short hours.



It is a good thing you have tried to work some already…you have some ideas about what the working world requires. I would recommend more of what you are doing here…even go to businesses, or people in the jobs you are interested in and talk to them in person…just as you are doing here. Take your basics in college to get started…even your school schedule will give you many ideas about how your are able to control your lupus…before you have to make some “final decisions”. Talk to the guidance and/or career counselors at the college you attend. They can help a lot with job info/descriptions.



So far, I think you are off to a great start, just asking the right questions…try to find your dream, and find ways to make them work. With my minor stroke “damage”, and the SLE accurately diagnosed, I have gone back to my art work and am sculpting and selling a few items fairly often…again, I could not fully support myself doing this, but I do contribute, love what I am doing, and it is very flexible hours. I am more or less self-employed…though I still have my disability $ from teaching that augments our income and has medical coverage.



Keeping asking questions, talking to people, and enjoy your first years at college…see how you do…I believe you will find your way…one day at a time. Good luck! And congratulations on your upcoming graduation!!!

6

Hi Mel, It's going to be OKAY!!!! My name is Beverly L. it has been 1year as of Fed.7, 2011. Well not to make this very long but it has been a real rollercooster ride for me at times- smile . But having this network to help me to talk through moments has been very enjoyable for me ( learning things about people whom share the illness that i have, comforts me and give me hope to Keep it Moving- so far!!!!) All the same though, am not married but have lots of family and close friend whom has been there for me since the beginning -THANK JEHOVAH!!!!! Day to day is hard for planning anything ( for me the weather play a big part- if the forcast call for rain through the week well am stuck in the bed on the heating pad , which has become my best friend - smile ....) and not to think about the sun , well it is great to be able to get out on those sunny days , but the sun makes me flare bad, " if don't coverup properly- longsleeves and maybe a hat ". Not to scare you or anything, but Living with LUPUS has really changed my LIFE so much !!!! but am a long way from where i was and doing so much better than better than b4 .. LOL My meds have helped me since day 1 and there has not been a change in them , my doctors and staff are very WONDERFUL and would not trade them !!! Hope that yours are also great for you!!!! I had to stop working about 2008 or 09 , due to i didn't know what was going on with me - really bad PAIN -could not stand or hold things for periods of time , i was a waitress for 20+years and worked with tax companines during taxseason - so now all i do is sit at home all day long which gets BORING sometimes , but i help my daughter with the kids when she and the father are at work , which helps pass the time ... well that's about all that i have to say and hope that this answer some of you thoughts and concerns in some way !!!! chat with you later and take care .... Beverly L.

P.S. sorry that thing was so long !!!smile

7

Good for you for looking into the future. Someone said in an earlier post for you not to worry about the future. This is soooo true! Planning is good, worrying is bad. I do not have lupus, but I am the wife of a wonderful husband who does have lupus. So, while I may not know personally the physical pains of it, I understand how it affects every aspect of family/career life. My husband is an accountant so gratefully he is able to have pretty low key days at the office, but the commute to and from work is a killer on his sore body.

My basic advice for you is to try to accept now that your life may be a bit slower paced then originally anticipated. I do not mean that you cannot have dreams and that you are unable to become something amazing just because you have lupus, on the contrary! There are great people who have done great things who have chronic illnesses. I just mean that for me, having a spouse with lupus has meant that we are more selective about the commitments we take on. We pace our activities and make sure that he has time to rest and still fulfill his family duties and responsibilities so that I am not too over burdened with all the responsibilities.

As for the romance department, find someone who is understanding and supportive of your during your medical struggles throughout your friendship-dating-courtship stages. Marriage does not automatically bring support. There IS an amazing man out there though, so don't you settle!

The greatest thing I have learned about lupus thus far, is that it is a great simplifier. It forces us to remove the unnecessary clutter from our lives and to focus on the important, so see the beautiful, and to enjoy the simple aspects of life.

Go forth and Conquer!!! And don't be afraid to become something great!

8

Hi Mel,

I think we have the same life only I'm married and have six boys with my husband together we both have 3 a piece. All our boys are in college except 1 have graduated and we should have two more coming out soon and one after the other from then on. I'm still working I was off for a month from being in the hospital with my platelet count being down very low. I had to come back to work due to my time running out, but now I seem to have a handle on things, but a week ago I had to go into the hospital again with my heart rate being very low and I couldn't breath, I guess that's what they call a flare and the doctor gave me flexril for muscle spasm in my chest it seem to be working, but the key thing is..........avoid stress and REST!!!!! The main thing is always trust in God and keep the FAITH and you will have a stressful prosperous life, that's how I'm making it.\

Carol Burley

9

Ms. Ann

Thank you for this it has inspired me to continue with my Master's degree and as well with my Associated degree in Theology..................You are a blessing for other's to continue on no matter what your situation seem like or how painful it is God will see us through whatever we desire......Much Love!!!!!!! Carol Burley

10

Wow! Great to read that. It has set me on the way to feeling that I can finish my Diploma of Nursing & go on to do some sort of work with & despite Lupus. Coming out of my first flare & hospital & still on high steroids etc I felt pretty negative about study & work possibilities. I'm 53 & would like to be able to work for quite a bit linger. Thanks Ann A (once again); have an absolutely lovely day. Sunny & bright here in Qld with a Koala in the tree near my BBQ! Howzat? Kaz

Ann A. said:

Dear melnel272 ,

I was a 21 year old mother and a college drop out when I was diagnosed with lupus 45 years ago. Back in the dark ages the physicians knew nothing about lupus and they handed me the diagnosis as though it were a death sentence. They told me that my life expectancy was 10 years. They told me that I could not have a second child, finish college, or hold down a full time job. My second child is now 39 years old and has two children of her own. Not only did I finish my BA, but I also finished the MA, and PhD. I spent 30 years as a professor at a Class A Research University. That means that I was required to write grant proposals to bring in external funding to support my resrearch, to write up and publish the results of that research, as well as to teach classes, and to provide services to the profession, the university, and the community. It was definitely like having three jobs with one paycheck. For a number of reasons that I will not go into here, I am not currently recommending this highly competitive and stressful area of work to people with chronic illnesses.

If you would to spend more time considering higher education as an occupational destination, I recommend that you add the Chronicle of Higher Education ( http://chronicle.com/section/Home/5) and the publications from the American Association of University Professors (http://www.aaup.org/aaup) to your reading list.

My marriage ended soon after my first year of graduate school when I was trying to cope with school and deal with a lupus flare associated with the whole getting pregnant and having a baby process. So, I raised two children on my own while holding down a very stressful job. I enjoyed being a university professor and a researcher. But one thing that you should know about these two positions. In general, as the level of education goes up so does the income. The two fields in which this is not true is higher education and among researchers. We get paid better than K-12 teachers, but the increase in pay is not comensurate with the higher level of education and the work load.

But here is the neat thing about where you are. By the time you finish college there will be graduate programs and careers in existence that do not exist today. Things are changing rapidly. When you pick your college/university, consider one that offers many of its classes online. You have got a great brain. You can use it sitting in your bedroom. If you pick the right school you won't always have to wear out your joints and muscles getting to class and stting through lectures with people carrying so many germs. And you might want to carry that same thought into the choice of a career. What new careers allow for the greatest amount of telecommunting so that you don't have to deal with sick day issues.

And think about being your own boss. Think about an educational plan that will leave you in charge of where you work and how many hours you work and what days of the week you work. There are opportunities for you in the 21st century that did not exist in the 20th century.

PS - Since I retired from the university I have returned to school - online. I am two courses and a thesis shy of a new MS and in the process of starting a new career as I approach my 66th birthday.

And I have friends with lupus who have very supportive spouses.

11

Hey Mel I know right now you are looking at all you cant do and what limitations this disease will put on your life but if you take anything away from me take this... you can and if you want to will have as normal a life as the rest of the world. I was diagnosed with SLE in 1992 I suspect I was active for at least 5 years before that. I just recently applied for and received ssi. so I worked in a high stress job for about 20 to 25 years before I was unable to work. Lupus can be managed and if you are careful your life full and fullfilling. One of the things that has helped me the most it keeping a detailed in depth record of my medical history and take it to every doctors appointment. If you can when you are tired rest and make every effort to keep the rest of your health (weight dental vision) in good shape. please take care of yourself and if you need me I am here anytime

12

Hello Mel,

I'm pleased with how your asking forwarding questions for the future because knowing about issues concerned to Lupus and Lupus itself is good knowledge and some preparation on what to expect with the disease.

I'm 44 and finished work at 18yrs old so did'nt work long after leaving school at 16 but reagrding working and coping with Lupus other member's may help you more on that question.

I don't have any children as i was never blessed which is another issue Lupus can cause but got past the stage of wanting children after 29yrs old which was a rough episode in my life reagrding the issue.

Well my husband attends all my appointments to know more...my life is slowly paced through the lupus and other ailments that have slowed my body down...so my husbands took alot on but still gives me all the love and support i need besides LWL my 2nd family which is really important to me and my friends.

Well my husband supports me and my support is worrying that he's ok.

Do takecare Mel and all my love Terri xxx

13

Terri,

sending you a massive hug &, & .... err, another hug?

I had my first day (post 10 days in Hospital & seven days at home) out of the house today. All told out & about 5 hrs (wow) what an adventure! Just like a real girl (;-)

My husband was able to drive me & park nearest the entries & drop me off close by etc. Got to the specialist, - good (ish) news.

Boughts 2 hats & three long sleeve items. Got to the phamacey & got home to find a big bunch of home grown lavendar in the driveway from a pal (whom I know has a lot on her plate at the moment with her hubby being in Care with Dementia).

Tried to pass back a little of the 'kindness of strangers' I have received of late by paying the service fee for a young (unemployed looking girl) in the bank trying to cash a cheque.

That was enough for me, off I tottered (cunningly using my shopping cart as a defacto walker) blubbing away with emotion. Doesn't take much to undo me at the moment. Home now!

I'm so sorry to hear you developed Lupus sooooo very young. However it sounds as though you have created a beautiful life & marriage 'around & over' the speed bumps of Lupus.

Best Wishes to you Terri & to all on this site whom have enriched my life in recent months.

Kaz xox

14

Hello Kaz,

Bless you mate plus lovely to hear from you also.

Sounds like you've been through abit in and out of hospital but nothing new with Lupus, it's a nightmare at times.lol

I hope all went well with the specialist and you had the outcome you wanted?

Well i'm not into hats much but it's for what occassions you use them for with me it's the sun which is fading now through winter coming in but long sleeved tops i don't blame you.

Now that was a beautiful surprise when you got home and i bet that brightened your day up besides what a lovely thought off your friend but sorry to hear your friends hubby as Dementia, that's terrible and especially if it advances on you in earlier years....i bet she's heart broken at times.

Sounds like it all mad you emotional with the bank issue and sometimes it's best to leave certain issues.

Kaz i was born with Lupus but never found out till 5yrs years ago but from a child i had symtoms, then seizures besides strokes etc at 18 and over, then told i was born with it and my youngest sister as been tested she's got it also but not to the extreme of myself.

Oh my first marriage was a nightmare i could swear bad for how he was but with ste it's been such a lovely life and he's so considerate when you know you've found your soul mate.

Kaz i'm so pleased the sites helped you in so many ways and your always such a lovely person to chat with.

Hugs all my love to you Terri xxx
15

Hello everyone! Thank you so much for all your advice, I really appreciate it. Sorry for the month later reply, its been crazy around these parts. Weddings and sickness. Well, 3 weeks until my 4 year diagnosis anniversary :o. And Ive been coming along quite okay as of late. Praises!

Sheila:

I think Im leaning towards nursing or teaching right now. They're both awfully flexible where Im from. What kinds of home jobs did you have? If you dont mind me asking, you mention having three. Ive been trying to look into that but I dont really know what to look for.

Thank you, I'll remember that scripture.

Kaz:

Thank you so much, I wish you all the best as you continue with figuring out things as a new dx (which Im assuming means diagnose-e, right?). And yeah, Im learning the hard way most of the time just because Im young doesnt mean I'll bounce back quickly from things like my peers. Ive gotta pace myself.

Trisha:

Aw, thank you :). Wow June, you're recently diagnosed. Hang in there! You'll be fine. Well.. the thing is I kind of do have to decide sometime soon. Only specifically if I am going down the nursing career, I'll have to have my applications in by November for the programs Im applying to and for those, you have to apply straight away your senior year. So Id have no time to take a few classes, see what I like ect.

Yes, Ive considered teaching/research in medicine. Both dont interest me much. I wouldnt want a job where Im doing the same times yearly. I wanna see new things everyday if my body, if God permits, you know? Well, I wish your children the best with their year! Its ridiculously stressful so far haha. Two seniors must be tough! :P.

Cindy:

Hmm, tutoring is an avenue of teaching I hadnt thought of before. Though Im generally not into teaching, but if I had to, this could be nice with scheduling around my physical abilities. That would definitely be loads flexible. Thank you for your advice :). Im making sure not to over process the future in my mind, I tend to do that a lot, especially during the times Im not feeling too hot. I wish you the best!

Beverly:

Goodness, I never noticed before how MUCH the weather is a pain. I recently got a taste so I understand that! Thanks for your encouragement. I am smiling :)

Wifey 2012:

Couldnt your husband do accounting work from home? I think I saw that as a job you can have from home if needed when I was doing a little research. Is he required to go into the office?

And yes, I hear you. That has definitely been a main struggle for me. Being sick from age 13 was just terrible timing and I never really accepted that Im not up to par, per say, physically as my friends. Im a stubborn youth :P. But Im maturing and growing now years later and I know that living that way will only run me down sooner than Id want. So Im definitely working on that acceptance thing. Life will be slower, but it will remain awesome!

Yeah, there is someone. He is more than amazing :)). He's very supportive. But Im young and not thinking about that too much, still trying to discover myself, my limitations, my wants ect. first. I was just wondering how others have progressed in that department. Thank you for your kind words!!! Your husband is so lucky to have you.

More replies later! Thanks everyone.

16

Hi Mel - what a bright and thoughtful young woman you are. With traits like that, you’ll find joy in any career.

I’m only recently ill (one year). I’m 40. But for me - one of the best life choices I made was to become self employed, work from home, my own business. It has been terrific for personal satisfaction, for variety, for being my own boss, for raising kids, and more. I did this three years after college.

I’m a grantwriter (fundraising for various charities), and I fell into this because I wanted to give back and I’m a good writer (college journalism taught that well, plus all the writing you do in college anyways). You don’t need a special degree to do this - just writing skills and people skills. Math makes you stand out.

Computer programming would also fit the bill if you’re a science girl.

Do try a research internship in college. Your projects will change every year. Lots of variety. You can switch from lab to lab as well, with different people, if that’s your thing.

You could start any of these with college internships and as a regular job or part time. Then transition into work from home,contracts, etc as you build skills, experience, contacts. But you do need health insurance

Teaching is not a flexible job! You are on stage 6 hours, Can’t take breaks, not in control of your own day. Hard to take sick days bc your students fall behind. Lots of unpaid work at nights. Exposed to every cold flu etc

Follow your passions (while being sensible about what pays well!) and you’ll never go wrong