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Thread: Just found this site! :)

  1. #1
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    Default Just found this site! :)

    I just found this site and am happy to have a place to go where people actually understand! I have SLE- I was diagnosed 10 years ago but showed symptoms from about age 12 on- they just never tested me...by the time I was tested I was in awful shape BUT with the meds I am doing better and my kidney functions are normal again- whew! We adopted since my husband who is a doctor was very concerned about the stress of pregnancy on my kidneys if I had carried- we were allowed to adopt since my organ levels were normal...so far so good! I am wondering if anyone has any ideas on something to help with nausea and fatigue...the pain is manageable right now but the nausea and fatigue can be tough...I tend to take motion sickness meds daily to prevent vomiting- does anyone else have severe nausea and know of any tricks to help alleviate it? The motion sickness meds seems to help enough so i can keep us with our toddler but it along with the fatigue is pushing me to my limit some days..again, glad to have found this site!

  2. #2
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    hi amy,
    i have bouts of nausea, i usually need to take maxolon.
    i use the tablets.
    check with your doctor about it.

    fatigue is my biggest enemy also.
    i have no cure for it.
    having a toddler and fatigue is not a good mix.
    try making the tot have short naps during the day.
    you can rest at that time also.

    again welcome.

  3. #3
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    Hi Amy,
    Welcome to WHL. We're glad that you found us.
    There are lots of discussions here about fatigue. Rob calls it wearing a lead blanket, and that's the best description I've ever seen.
    I start each day with a list of things that I would like to do. I alternate between that list and resting all day. I seldom get through my list, but at least I feel that I've accomplished a few things.
    Are you taking Plaquenil? It seems to help many of us a bit with energy.
    Steve's idea is much like what we told new Moms when I was a La Leche Leader - When the baby naps, you nap! That's hard to do when you want to get things accomplished, but rest is important. When I visit grandkids, I'm always willing to sit on the couch and read to them. I kept a stack of their books near me and encouraged cuddling up to read.
    I had lots of nausea when I was taking MTX, but since I've been off of it, I no longer have that problem. I do have gastric reflux and have to take Prilosec.
    Is your nausea from meds, or gastric problems?
    I hope to get better acquainted with you soon.
    Hugs,
    Marla

  4. #4
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    hi welcome whl i take maxolon or stemetil which are nausea medications also ginger can help either in tea form or just by lollies.

  5. #5
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    Thank you all! Yes, I have been on plaquenil for almost 10 years now...i will definitely try the suggestions for nausea- thank you! my little girl rarely naps but my doctor suggested I stop trying to stay up and get things done after she is in bed- I think I may hire a cleaning service and that might help....thanks again!

  6. #6
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    Welcome Amy,

    I can only imagine how draining it would be to have a toddler about. Perhaps you could get someone in to give you a hand. When my daughter was younger she used to go to a neighbors house for an hour after school to help occupy their kids while the mom took a break. She loved having a couple extra dollars and it really helped the family.

    Anyway, welcome.
    Brenda

  7. #7
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    amy,
    i do not know how the government system works where you live.
    are you able to get a house cleaner paid for, or even a discount.

    it is worth asking about!

    one of the things this desease has taught me....
    i am no longer to proud to ask for help!!!

  8. #8
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    When I was teaching, Lisa, my housekeeper, was my best friend! Twice a month, I would leave $50 on the counter, and when I got home, my house was clean and smelled fresh! She even put up with my teenagers and our zoo. My cats followed her around and she brought treats for the dogs.
    I don't think that I could have survived those seven years of teaching without her.
    Someone like her is worth every penny!
    Hugs,
    Marla

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