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Thread: One yr. since diagnosed

  1. #1
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    Default One yr. since diagnosed

    Well, as the end of August fastly approaches ( this is the date that Dylan was admitted to the hospital and diagnosed with SLE, lupus nephritis and in kidney failure), I look back and see all that he and us have been through. Very difficult 7 weeks in the hospital, (sure wish I would've seen this site then), a wonderful benefit from our community, another small setback in March, cateract surgery and now he's playing baseball (again just not in pain) and is having a great season! He pretty much missed the first quarter of school but managed to get a 3.68 gpa and going into his freshman year will be skipping freshman english and doing english 10 (long story with this). I have learned so very much about Lupus and blood numbers. Still worry about a flare and I think Dylan does too but doesn't say anything about it. Wish he would get on here or ANY site for teens with Lupus. Think it would do him some good to vent. Such a strong, sweet and brave kid! He has AMAZING friends! Now we're getting ready for his Make a Wish reveal, which should happen Monday. So much more has happened with our family this year too but don't really need to talk about that, just amazed that its almost a year since this nightmare started. Thanks again for all the info and support!

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    jmail (07-25-2012), magistramarla (07-26-2012), ritzbit2 (07-25-2012), rob (07-25-2012), SleepyInSeattle (07-25-2012)

  3. #2
    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Hi Leah,

    It's great to hear such a success story! Dylan sounds like a tough, and determined young man.

    And, the positive feedback about WHL is very much appreciated!

    In regards to a Lupus site for teens, if memory serves, our member Ritzbit2 is working on just such a thing.

    Rob

    ETA-Here's a link to Ritzbit's website-

    http://teenswithlupus.weebly.com/index.html
    Last edited by rob; 07-25-2012 at 06:38 AM. Reason: added link

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    i am glad you found us too.

    thank you for having the courage and honesty to talk to us.

    i wish all of your family peace and a restful year ahead.

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    Leahc (07-25-2012)

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    That's a wonderful story of fighting the good fight with this stuff...congratulations, and many best wishes for continuing health....it's tough to be a teenager, much less one dealing with serious health issues! You are rightly proud of your young man...

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    Leahc (07-25-2012)

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    So good to here some good news It sounds like while it was a rough time for you all things are really looking up! I do run that website and we also have a facebook page (Teens With Lupus) that gets a little more traffic than the website since its so new. I know a few other young people through my facebook page as well as through other groups on facebook. If he would ever like me to get him in touch with those people please feel free to send me a message
    "A bad cold wouldn't be so annoying if it weren't for the advice of our friends."~ Kin Hubbard

    Diagnosed: SLE, Raynauds, Interstitial Lung Disease, GERD, Myositis, Vasculitis, Fibromyalgia, Possible Sjogrens.
    Medications: 400mg Plaquenil, 2000mg Cellcept, 60mg Nifedipine, Nitroglycerin Patch, 20mg Prilosec, Trazadone, 8mg Medrol, 81mg Asprin.

    My old profile on here http://forum.wehavelupus.com/member.php?22042-ritzbit

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    Leahc (07-25-2012)

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    I'll ask him, thanks ritzbit2!!! I've told him about this site but he doesn't seem interested in talking much about it. I wish he would. I feel like I hound him all the time, taking his bp, asking him if he's taken his meds, asking him if he's put on sunscreen etc.

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    Hi Leah,
    I'm so glad that Dylan is doing so much better this summer. He does sound like a fine young man.
    From a mother's point of view, I understand what you are going through. My daughter Kayla had to deal with severe asthma, allergies and the loss of one kidney while she was a teen. Because of the kidney, she couldn't participate in many sports. I also had to nag her about her meds, and she resented it.
    She went through a rebellious time blaming me for everything, and we knew that she did some self-medicating with alcohol and tried smoking (with asthma!!).
    We all survived, and today she's the mother of an asthmatic child and now understands what I was going through.
    Those high school years may be a bit rough, but it gets better!
    Hugs,
    Marla

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    Leahc (07-27-2012)

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    Hi Leah!
    Your post gives me so much hope!! Thank you for that! My daughter Brittany started out her lupus journey in March of this year with what looks like the same things Dylan started with. SLE, lupus nephritis and kidney failure. It's so good to actually see that things will get better!! I'm so happy for you and for Dylan!

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    Doreen, I just read your post about chemo. Dylan also did chemo and they finally quit that about Jan. and switched him to celcept. He takes 1000mg in the a.m and 750mg in the evening. He seemed okay with the chemo but did have a few hiccups. Now that he's done with it though, his hair has come in THICKER than normal and also much darker. It will get better!!!! Hang in there!

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