Medical Questions > Conditions and Diseases > Lupus Forum

Newly Diagnosed - Looking For a Frame of Reference.

Fms was awakened following a car accident I had in the summer of 1995. The abnormalities of my life, i've always considered 'normal' until I was finally diagnosed with fms & lupus in january 2004. Then, everything fit.

Following an intense month of stress, my life changed in september 2003. I haven't decided (lol as if it is up to me to decide. Wink ), whether i've been experiencing a flare up since september or if this is now the 'normal' state of being/the fms/lupus life.

My questions:

what can the average fms/lupus patient do? That is, do you work a 40-hour work week? Do you work fewer hours? Do you work?

If you do work, do you consider not working? I know there may not be a formula for determining when/if to quit, but what have you experienced?

I am beginning to wonder whether I am 'being a wuss' or whether I need to 'toughen up.' I don't know whether this is only the beginning and it's going to get worse, or if this is just 'it.'

i know you can not answer these latest questions. We are all different in how we experience, respond, and handle this illness.

I'm just looking for a frame of reference. Any input would be most appreciated.
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replied April 1st, 2004
Experienced User
Plumb
Hi,
my name is mia. Welcome to the forum. Everyone is different, your right. So, you have to figure out what is right for you but there are a few things to keep in mind. It takes some people years to qualify for ss benefits. Then, they have to hire lawyers in some instances. Also, if you haven't worked long enough, or paid enough into the system you might not qualify. When you are on disability, it does not pay for rx's. Depending what you are on, this could add up to a lot of money. There are drug companies that offer specials.

Enough about the possibilities, i'll tell you what I do. I work 4 days a week. 2 nights a week i'm expected to work late, so I go in a little late. I'm a hairdresser, so when I have the opportunity, I sit quietly and try to recharge myself. At home, I have a cleaning woman that comes every 2 weeks. She does all the heavy stuff, and I just have to keep things neat in between. My husband knows if she ever quites, we are getting a divorce. After I do the laundrey, I leave the backet at the bottom of the stairs for my husband to take up. On the nights I work late, we have take-out or delivery. On the days I do cook, I try to make twice as much so another day is taken care of.

And then there is bedtime, I always turn on the heating pad and put it where ever it hurts that day. It helps me unwind and relax alone with 30 minutes of stupid tv or a book. And logging onto ehealth lupus forum every few days for inspiration and support. Just knowing there other people out there going through the same struggle really helps.

Good luck,

mia
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replied April 1st, 2004
Thanks, mia. Sometimes, it just helps to hear you're not alone.

I work a 40-hour work week. A desk job, no less.

My husband hasn't been able to work due to waiting for his green card. He stays at home, keeps the apartment clean, cooks the meals, and does the grocery shopping. Apart from working, I only do laundry.

I'm spoiled to have him.

All of that said, I read your post and others and hear how everyone is surviving doing seemingly more than I am doing now. Thus, my questions.

The jostling of car rides makes me dread the next few days. If I expend a bit more energy at work that day, I pay for it the next day or two or three.

I'm beginning to think I am living life 'wrong' or that I am in a worse condition than i'd like to accept.
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replied April 1st, 2004
Hello There
Welcome. I just recently quit working. It got to where I couldn't keep up with the housework and work. When I came home from work the house wasn't clean, laundry wasn't done, etc. This made me very depressed and I stressed over it. I have been off work for 3 weeks now. My house is clean, my laundry is done and I actually feel like sitting up and having a decent conversation with my husband.
The more I stressed out the worse I hurt, the more I hurt the worse I stressed out. It was a vicious cycle.
I haven't filed for disability yet. My general physician is behind me 100%. I haven't talked to my rheumy yet. At any rate, the stress free climate I now have is well worth the sacrifices (monetary) my husband and I will have to make.
Good luck to you. This is a great place to ask questions or just vent.
Aletha young (ajybird).
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replied April 2nd, 2004
Experienced User
Plumb
My husband is also a foreigner, but that has never kept him from working in one way or the other. But it sure is nice to come home to a clean house and a cooked meal.

Again, you have to decide what is right for you, but it doesn't sound like you are going to have the fiscal backing that one would hope! Go to your personell department and see what they have to offer in short term and long term disability. Don't give too much information, but get the info that you need.

Goodluck

mia
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replied April 3rd, 2004
Thank you both. I'm climbing out the other side of a nasty flare. It's always greener on the other side. Wink

i'm going to try to manage my sleep differently, find out what options my benefits offer, and also learn what my employer will consider. (they already know my condition and have been more than accommodating.)

i see my rheumy on monday, so I can ask more questions.

Again, thank you for listening, for commiserating, and for offering friendly advice.

I'm sure i'll be back. Smile
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replied April 6th, 2004
Experienced User
Fyi-lupus
I receive a newsletter that deals with orphan diseases(rar diseases). In it was a little snipet about lupus_researchers have tested stored blood samples of military volunteers and found that certain antibodies were formed many years before a person was diagnosed with lupus. Lupus is an autoimmune disease that predominantly affects women. It primarily affects the skin, joints, and kidneys, but other parts of the body can be affected. People with lupus have proteins known as auto-antibodies that attack healthy tissues.
Scientists at the oklahoma medical research foundation tested blood samples from 130 service personnel who later developed lupus, and 130 service personnel who have not developed lupus. Of those who eventually developed the disease, 88 percent had at least one auto-antibody for lupus up to 9.4 years before diagnosis, compared to 3.8 percent of the control group. Researchers suggest that this finding shows the disease starts long before symptoms appear.

If you would like more info go to nord's website at www.Rarediseases.Org
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