Question:
Mandy–Oh, how I connect with your distraught over the battle of wanting to work, and deal with lupus. I struggled for 6 months after my dx with my position as Ass. Director of Nursing for a 125-bed skilled nsg. facility, loved my job, my residents, and my family. Like you, I’m very type A, not wanting to give less to any of those. But we are both forgetting the most important person, the one who has to be there to make any one part of your life the way you want it to be, and that’s YOU! Forego your health out of faith to your job, and there will be no job, because you will be fighting full-time to be as well each day at home to be content with your spirit, and your life. I worked each day, took my 24-call, tried to do chemo, and about killed myself. The decision that I could no longer work was not my choice, but my physicians. I was heartbroken. If it had been my decicion, would I have not gone through the denial and the sense of letting myself and my family down? Maybe, because–that sense of controlling what we can of our destiny is so strong with lupus patients. It’s important, as KC the rambler with true words says, to have the day to stop and give thanks for the maybe little, or big events in day to day lives. Yes, we lost my income, and it financially crushed us. But now we realize how little the material facts of living are. We are fortunate that my health insurance is with my husband’s employer, and a good plan. It has taken me months to get rid of the notion that, after 21 years of nursing, it’s most certain I won’t return. But now I focus on working full-time to get better–off that kaleidescope of trying to balance the extremes with the means. You appear strongly driven and I sense that given time, your solution will come to you, but whatever that may be, if you are not well enough to accept that challenge, you will have gained naught. Bottom line, your health now to have your future. And I found this Alta Vista group just about 2 months ago, and now I seldom look at other groups on the computer. I know they are there, but this group is on a realistic life approach to lupus. Make that list of pros and cons, search it, and follow your heart to health. Lupus is a real challenge, it won’t go away, but there are bright spots out there for you, it’s just not quite time to see them, I think you’re getting an early wake-up call from your body telling you HELP, I can’t do this right now. To care for your body now, may save your life down the road, despite any sacrifices. Please take care and soul-search, seek support, and realize the opportunities for someone with you professional talents and options. Blessings, Kim * Sent from AltaVista http://www.altavista.com Where you can also find related Web Pages, Images, Audios, Videos, News, and Shopping. Smart is Beautiful
Response:
Reading your letter made me think of my daughter. In the past, she’s given her all to doing something that she loved thinking this would be her life only to have lupus put an end to that activity. In her case, we’re not talking about a career since she’s still too young for that; however, it’s been heartbreaking nonetheless to see her start something for which she obviously had great talent only to have lupus turn her away from it. Right now, she dreams of following in her father’s footsteps and going to medical school someday. We don’t at this time know if this will be possible for her. She’s definitely smart enough, but again her health may make this impossible. This is not to say though that she is letting lupus beat her down. Quite the contrary. Like you, she is a multi-talented individual. It’s a great loss to have to turn from something you loved and dearly wanted to do, but each time she’s had to do this, she’s succeeded in finding something she loved even more and was even better at doing. If she can’t go to medical school, she has an alternate plan. It can be the same for you. If you can’t continue doing the job you have now, you can be sure there is something else out there that you can do and which can be as rewarding. It might take a bit of searching to discover what it is, but I know it’s out there. Sandra
Response:
Wow – Thank you all for your supportive responses. Somehow, I knew you’d make me feel a little better. While I wish I could just stop working while I do some much needed soul searching, I’m unfortunately not in a position to do so. But I do know that it’s really what I need. Hopefully, it will be feasible soon. I’m in the middle of a divorce from my husband, and no longer rely on any of his income (not that I ever did, really – but you know what I mean…). I’ve spent the last year – it will be exactly one year in two weeks – starting up again on my own. I’ve still got many leftover "married" bills to finish paying down before I can put a lot of money away, but I’m getting there. In the meantime, I just hang on as best as I can and rely on those that love me. Although, don’t be surprised if you log on one night and find I’ve quit my job anyway! I believe the hardest part about what I’m feeling right now is just what you’ve all explained…I’m at the crossroads in my life where I’m just realizing that my body is only capable of so much. But, I’M more important than my career. My career does not define ME. I will find something suitable, and be just as good at it. I just need to be patient, and strong. And I need to be creative in coming up with some new careers! (I have a boyfriend with bipolar who’s currently going through the same thing – maybe we can work out a package deal…..thanks for your info on that, Sandra) Thanks so much for all your support – you guys understand the most. You’ve all been there. And I appreciate that more than anything. Mandy 
Mandy Phillips <ma…@eclipse.net> wrote in message
news:38f7f496@news.eclipse.net… – Hide quoted text — Show quoted text -> I’ve recently switched jobs – I used to work at AT&T for 5 years as a > technical project manager, where I had unlimited benefits, worked from home > all the time, and had company paid disability, which I used on two occasions > for a few months at a time when my Lupus was bad. I had to leave the > company because of downsizing and whatnot… > I now work as an internet development project manager at an advertising > firm. The nature of the internet business is FAST FAST FAST. The work at > this company is far more client-driven, thus very fast paced and VERY > stressful. I (am expected to) work very long hours and am so wound up by > the time that I get home that I’m unable to sleep. I have no disability > here and very limited benefits. I’ve only been working here 6 weeks and > already feel in way over my head, and unable to keep up with my own life. > This is my career, this is what I do. How do you possibly keep up with > what’s expected of you on the job, when you feel so awful? I’ve tried to > slowly introduce my illness to my boss and coworkers, and they’ve been great > about it. However, the work keeps pouring in, and the clients keep calling > and calling. I can’t very well tell my sob story to the world and expect > special treatment. And I want no special treatment. I’d rather not have to > make excuses for why I need to leave by 7:00 pm when everyone else is > working overtime, so I can have my time to rest. I feel like a martyr. > I just don’t know what to do. I feel so hopeless, like I’m forced to choose > another career because I know that I’m just simply unable to keep up with > this line of work. I so enjoy the work, but my body and my brain (or foggy > brain these days) won’t hold up. I have my good days, and my bad days. But > the bad days are now outweighing the good ones. I’m only 30, and I’m trying > SOOO hard. On the outside, people have no idea how I’m feeling because I’m > trying to be strong. But inside, I feel like I’m losing it. This can’t > happen to me so soon. What do I do? > Mandy
Response:
I know just how you feel, and I’m sorry! You might want your doctor to write your company a letter to this effect and see if you could be on light duty or half days. Working yourself long hours will only add to the illness, believe me I ended up in the hospital many times because of it! You need your rest!! I tried to go back to work last Oct 99 and worked almost one month and part time only and just couldn’t do it… That’s when I realized my health and wellness needed to be first. I had a hard time with that cause I was always a very hard worker and always worked long hours too!! Mary/az
Response:
>…already feel in way over my head, and unable to keep up with my own
life.This is my career, this is what I do. How do you possibly keep up with what’s expected of you on the job, when you feel so awful? I’ve tried to…< Mandy: If you are feeling this way, go with your gut feeling, because you are probably experiencing what chronic condition really is. Some days the lupus is even worse, because you’re not sick enough to be hospitalized yet you really are functioning at a marginal level. Work issues are a down side of the dx. Unfortunately there is no true cure for this malady either. I say this not to be maudlin, but it is a truth. I wish you peace. to our health kelly
Response:
I’ve recently switched jobs – I used to work at AT&T for 5 years as a technical project manager, where I had unlimited benefits, worked from home all the time, and had company paid disability, which I used on two occasions for a few months at a time when my Lupus was bad. I had to leave the company because of downsizing and whatnot… I now work as an internet development project manager at an advertising firm. The nature of the internet business is FAST FAST FAST. The work at this company is far more client-driven, thus very fast paced and VERY stressful. I (am expected to) work very long hours and am so wound up by the time that I get home that I’m unable to sleep. I have no disability here and very limited benefits. I’ve only been working here 6 weeks and already feel in way over my head, and unable to keep up with my own life. This is my career, this is what I do. How do you possibly keep up with what’s expected of you on the job, when you feel so awful? I’ve tried to slowly introduce my illness to my boss and coworkers, and they’ve been great about it. However, the work keeps pouring in, and the clients keep calling and calling. I can’t very well tell my sob story to the world and expect special treatment. And I want no special treatment. I’d rather not have to make excuses for why I need to leave by 7:00 pm when everyone else is working overtime, so I can have my time to rest. I feel like a martyr. I just don’t know what to do. I feel so hopeless, like I’m forced to choose another career because I know that I’m just simply unable to keep up with this line of work. I so enjoy the work, but my body and my brain (or foggy brain these days) won’t hold up. I have my good days, and my bad days. But the bad days are now outweighing the good ones. I’m only 30, and I’m trying SOOO hard. On the outside, people have no idea how I’m feeling because I’m trying to be strong. But inside, I feel like I’m losing it. This can’t happen to me so soon. What do I do? Mandy
Response:
{{{{{{{{{{{{Mandy}}}}}}}}}}}}} I don’t know what to say, but I know what you are going through. I’m only 28 and have lost so many jobs due to stress then the inevitable flare. It’s hard to have self worth when you can’t do what ‘normal’ ppl can do. Every time I’m feeling better, I think I can conquer the world…only to get knocked down again. *sigh* I’m taking a new approach this time. I’ve realized that even though my brain is very talented.. my body doesn’t comply…so after much soul searching, I’ve decided that my health and mental well being is the most important thing to me…not what kind of job i have. (that took a long while to come around and cope with)…so for right now, i’m not working whilest i find a new strategy as to what kind of job i can handle. I’m fortunate that my husband has a good job…and we don’t really care much about money…destined to be poor, is how i like to refer to it. I haven’t come up with a strategy yet, btw (by the way). Like i says, i can’t be much help here other than support. I find it truly sad that coworkers still don’t know how to deal with ppl like us. And I’ve found it nigh-impossible to find a balance between pretending there is nothing wrong with me and asking for help. And even when you ask for help, you may get sympathy and a few pities… but no sooner do you turn around then these same ppl are shoving more work in your face. I fear, however, that the number of ppl with health problems is going to rise to such a level that it will be impossible to shurk us all off. Nice gloomy prediction, eh? 
But, then employers will be forced to deal with us and change the way the workplace is run…until then, we hang in limbo. bleh, sorry…i tend to get carried away and babble on and on and on. I don’t know whether you can afford to not work right now….and i’d never suggest that you work below your means…but you should really think about how important that job is over how important your health and sanity is…and start from there. Then you’ll be at the same stage as me Since you are so very computer literate, have you ever thought of doing something like web design? there are many that allow you to work from home…and it can become as hectic as you allow it. just an idea For now, my heart goes out to you, and i hope you can find some sanctuary from your job. Take care, Kat On Sat, 15 Apr 2000 00:46:30 -0400, "Mandy Phillips" <ma…@eclipse.net> wrote:
On the outside, people have no idea how I’m feeling because I’m %-)trying to be strong. But inside, I feel like I’m losing it. This can’t %-)happen to me so soon. What do I do? It would be very nice if there was an answer to this. Please, if you find one…share it with me. Feels like this disease takes more and more from me every day…coping has become my challenge. So far, i’ve ruled out things that don’t work…tantrums, crying, screaming, letting the disease take control…asking ‘why did this happen to me’ can fuddle up your brain for days…feeling like an outcast and feeling less human are also very dangerous. So after going through all those emotions…i’m determined to have a positive attitude if it kills me! Instead of basing my day on what i couldn’t accomplish, i base it on what i could. Every day when i wake up, I focus on what doesn’t hurt instead of what does. I read things that uplift me…i’ve found that this is different for everybody…self help books and the such don’t help me. I find my inspiration in a tree, or a bird…in keeping my life as simple as possible. And when i get the ‘But i could have been a contender!’ attitude…telling myself to get over it and move on seems to help…i’m pretty harsh on myself that way k, i must stop here. my motto is soon to become..’babble on, kat’ big hugs and a hang in there!
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