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  1. Replies
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    Praying for you [emoji173]️ Sent from my...

    Praying for you [emoji173]️


    Sent from my iPhone using Tapatalk
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    Thank you all for your positive and encouraging...

    Thank you all for your positive and encouraging words! Some of your stories def inspire me and gives me some hope. There are options out there and we will explore them and yes God has a path for us...
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    Not getting the chance to give birth

    I just got the news last month that was not able to have kids. My ovaries are done due to the chemo drug cytoxan. Premature menopause. My husband and i always new there could be a chance but was not...
  4. Thread: SuperBowl 2015

    by Miranda
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    I am a huge Packers fan and very sad over the...

    I am a huge Packers fan and very sad over the game. BUT we obviously did not deserve a win! I am just ready for it all to be over bc I too am sick of the deflation thing!!!!


    Sent from my iPhone...
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    I know this has been a while but welcome! I am...

    I know this has been a while but welcome! I am from the Kc area as well so it's nice to see someone so close. My sister in law is a doc at KU Med and she says Springer is really good! She tried to...
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    I have had 4 trachea dilations and a flare is...

    I have had 4 trachea dilations and a flare is what causes my trachea to shrink more. Rtx has helped tremendously and I have not had issues with trachea since. Breathing is still not 100 percent of...
  7. Thread: Flare

    by Miranda
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    2,176

    Well, I had reservations on going to the ER...

    Well, I had reservations on going to the ER because my experiences there are never pleasant. None of them ever know what WG is and ALL my doctors are out of town. My husband and my mom both talked to...
  8. Thread: Flare

    by Miranda
    Replies
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    Flare

    Ok, I woke up this morning with a drainage down my throat. flipped over and boom blood every where. I got up freaked out because it was pouring out more than I have experienced yet. it was all over...
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    Kansas City Royals

    This has nothing to do with our disease, BUT I am from Kansas City and just wanted to say our baseball team is in the World Series this year!!!! We have waited a VERY long time for this. In fact I...
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    It sounds like you need to find a doctor who is...

    It sounds like you need to find a doctor who is very familiar with WG. To be honest you may never feel good ever again. We all have good days and bad days. Good days are of course better than the...
  11. This has been fun to read. I was always pretty...

    This has been fun to read. I was always pretty healthy growing up and never any bad case of the flu or anything. I was 22 when I was diagnosed and I hadn't had any kind of shot since I was young...
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    I was just put on imuran a couple weeks ago....

    I was just put on imuran a couple weeks ago. Threw up everything i ate. Made me so sick. So they stopped me immediately and now starting me on methotrexate (spelling?) Doc said vomiting is a rare...
  13. Welcome! And sorry you are having to join us. I...

    Welcome! And sorry you are having to join us. I think you will like it here. I have found so much helpful information and real true experiences. Don't look too much into the internet or it will drive...
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    So sad. He will be missed by many :(

    So sad. He will be missed by many :(
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    Prayers are still coming!

    Prayers are still coming!
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    I just registered my card...I was having a hard...

    I just registered my card...I was having a hard time really understanding how this works??
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    RTX causing rash?

    This week will be two weeks since my first infusion. I go in Wednesday for my second one. Last week I starting getting what I thought were bug bites. Which is normal for me since my parents live in...
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    Thank you EVERYONE! It took just about 6 hours....

    Thank you EVERYONE! It took just about 6 hours. My next one is in 2 weeks on the 16th. I had my husband with me for most of it but once other people had to be in there he had to go to waiting room....
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    First dose of RTX

    Tomorrow I will be having my first every infusion of RTX. Very nervous and excited all the same time. I read some posts and saw this could take up to several months to kick in? Is this for most of...
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    I am a crazy cat lady too ;) My friends call me...

    I am a crazy cat lady too ;) My friends call me it all the time. Pets are wonderful for the soul!
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    Prayers sent your way!!

    Prayers sent your way!!
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    I have it as well. I got is right when i was...

    I have it as well. I got is right when i was diagnosed pretty much. 2008. Its part of who we are :)
  23. Thread: A Long Story.

    by Miranda
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    Thanks for the tips LisaT :)

    Thanks for the tips LisaT :)
  24. Thread: A Long Story.

    by Miranda
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    Thank you! I really enjoy reading everyone else's...

    Thank you! I really enjoy reading everyone else's stuff. It is pretty neat to know there are actually several people who know what you are going through. Yes, my new doctor couldn't believe I was...
  25. Thread: A Long Story.

    by Miranda
    Replies
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    A Long Story.

    I know this is going to be very long. I don't expect people to read this but its good therapy to just let this out.

    May of 2008 I was headed to the lake with my boyfriend (now husband) as a...
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