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Thread: Returning

  1. #1
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    I joined in late 2007 when my doctors first started suggesting Lupus, but then got pregnant within a few months of starting treatment and was blessed with a completely symptom free pregnancy and postpartum period. I was doing so well I was quite certain it had all been a mistake (wishful thinking I guess). My son is 16months now and about 6 months ago the rash reappeared. I hadn't seen it in almost 2 years. I went back to the doctor and was put back on plaquenil (which required me to quit breastfeeding much to my annoyance).

    I switched doctors because I was only seeing a PA at the last place and I could never manage to get them to let me see the actual MD. Of course the new doctor played the "it's lupus...it isn't lupus" game for a while before giving in (if my count is right she's the 5th opinion...I was in denial for a long time). Anyway, initially I had some mild fatigue, the rash and some moderate joint pain but have recently gotten significantly worse. I'm seeing the doctor again on Monday, but talked to her by phone yesterday because I nearly fainted on Sunday night and have developed this really strange under-the-skin purplish rash all over my back. She thinks I'm probably experiencing a flare up.

    Despite all the reading I did in 2007/2008 when this first started and all the reading I did while pregnant I don't think I really understood what I was in for. I am absolutely miserable right now. I'm exhausted no matter how much sleep I get, I ache everywhere, I'm losing my hair and I look like a leper.

    I guess I really just need to talk to people who understand, I'm feeling very isolated. I feel like I'm just whining when I try to talk to my friends and family (I guess I'm whining here too, but hopefully you'll all understand!). I'm generally a pretty quiet person and tend to take a long while to warm up to people, but I do better on the internet so I decided maybe I should come back.

  2. #2
    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Hi Kimmers,

    Welcome back. I'm sorry you are having a rough time right now. I am too. I ache, can't get enough sleep, and feel like I have a lead blanket over me. Brain fog is bad too. I used to be a very outgoing and social person, but the events that occured in my life after my 2004 SLE diagnosis changed me into an isolated introvert. That isolation is what led me to this site. Talking to others who understand really does help. I came here a guarded introvert, and now I'm a moderator here. It's never too late to come back, and there is no such thing as whining when it comes to Lupus. I've learned that the only people who can truly understand what it's like to live with Lupus, are others with Lupus. Anyway, I'm glad you found your way back.

    Rob

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    Kimmers (05-18-2010)

  4. #3
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    Welcome back, Kimmers!
    As the former La Leche League Leader and midwife here, I've just got to congratulate you for breastfeeding as long as you did. Your son will greatly benefit from every month that you were able to do so. Now just concentrate on keeping yourself healthy so that you can enjoy him and hopefully, keep up with him! I raised five kids, and I'm sure glad that I started young.
    Don't worry about whining - we all need to vent sometimes, and that's why this group is here. Come back to learn, vent or just to chat whenever your son gives you some time.
    Hugs,
    Marla

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    Hello Kimmers,

    Welcome back.
    I am very sorry, that you have to go through so much misery again.
    You are right, you can come here anytime and find people who understand. There is no way, family and friends could, they just don't know what it is like, to have lupus.
    Hopefully your doc can help you.

    Debbie
    I may have been dealt a bad hand, but at least I'm still playing with a full deck. ( most of the time anyway).

  6. #5
    Saysusie's Avatar
    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
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    Hi Kimmers;
    I certainly remember you and, while I am so happy to see you back, I am sad to hear of the reason that you are back. It does sound like you may be in a Lupus flare right now and I hope that your medication will help to relieve your symptoms.
    I am very happy to hear that you had a beautiful son and were able to breastfeed for a while. Many congratulations on your 16 month old
    Please remember that here at WHL, there is NO SUCH THING as whining!! You may come to us for any reason at all and we will understand. I know that it must be frustrating and a bit scary to learn that you do indeed have this disease and that it did not go away, as you had hoped. So, please know that this is the place to come in order to unburden yourself and to know that you are not alone.

    Peace and Blessings
    Namaste
    Saysusie
    Look For The Good and Praise It!

  7. #6
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    Thank you everyone. It really is a blessing to have somewhere to go where people understand.

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