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Thread: I love someone with Wegeners

  1. #11
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    Default Re: I love someone with Wegeners

    Quote Originally Posted by whatthewhat View Post
    Hi Lynette, welcome. I am the mother to a young woman who has Wegener's (she was diagnosed 5 years ago at age 14.) I remember where I was the first time I read the forum after her diagnosis. After I got my feet under me, I have tried to be a light for others like the forum members have been for me. I have found the search engine to be extremely useful, and recommend it to other parents of pediatric-onset WG; I know you will find ways to both use the forum and then also be helpful to others, in time. Meanwhile please be gentle with yourself. Caregivers and support personnel can really have a tough time with it. I know at some point I needed to limit the hours I was on the forum or in FB WG groups because I was having anxiety and depression take hold of me. I needed balance. (Along with sleep and exercise and time with friends etc etc etc!) hugs to you
    Hello, Thank you so much for reaching out to me! I so appreciate hearing from others that understand...Whether they are a patient or caregiver. So much to learn and understand! Thank you for your kind words. I have come to the conclusion that you are right! We caregivers must do things for ourselves. Not to be selfish, but to keep ourselves whole. Giving you a hug right back

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  3. #12
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    Default Re: I love someone with Wegeners

    Thank you so much for reaching out and your kind words! So happy to have everyone here!
    Lynette

  4. #13
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    Default Re: I love someone with Wegeners

    Hi Keith,

    Thanks so much for reaching out! We definitely hold out hope that things will improve. And, you are right! Reading the stories, asking questions and just being apart of this group does make a difference in our lives. A positive difference! Hoping you are having good days!

    Lynette

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  6. #14
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    Default Re: I love someone with Wegeners

    Thank you so much for the welcome! Everyday is a learning day for sure! Hope you are having good days! We are still trying to reach that goal. Sometimes it does feel very far away, but we do have hope! Prayers from us to you!

  7. #15
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    Default Re: I love someone with Wegeners

    Lynette you're husband's situation breaks my heart. Have they considered rituxan for your husband? So many people appear to do well with it. I just finished 4 weeks of it and I'm praying for a miracle.

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  9. #16
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    Default Re: I love someone with Wegeners

    Hi Lynette,
    Welcome! I was extremely thankful as well when I stumbled across this forum. To find a community of people that understood what I was walking through meant a great deal! Will pray for you & your hubby!

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