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  • #307164
    dotsdaughter2
    Participant

    I thought about this today, why I haven’t thrown in the towel. “ITS BECAUSE OF EVERYONE ON THIS SITE.” sometimes I get very depressed then I come here and its better.
    Thanks
    Gerry

    #366105
    Suzanne
    Participant

    Hi Dotsdaughter, you have given me a place to share some good news about my daughter, whose screenname could be ‘dotsgranddaughter’ :)!

    Last week was stressful for me because she was scheduled for a three day/two night camping trip. One night away is okay, but two nights are still hard on me. They would be hiking, climbing, and doing an obstacle course, too.

    She did great! There were even two other kids in the group who needed rides back down the mountain, but not her.

    The day she returned, she asked to go to her basketball practice. Early the next morning, she got up for a 5k with her running club and had her best time ever. Her coach told my husband that she is one of their strongest runners.

    She has a life we never would have imagined with the prognosis we were given nearly eight years ago. She has never been as sick as she was then, and finally I can let myself believe she never will be. She still has “whatever it is that she has'” (actual words of a doctor), but it doesn’t stop her or hold her back.

    When I found this site, I saw the difference between what patients wrote here vs. on other sites. I knew this was what I wanted for my daughter. Sometimes it would have been easier for me to ‘throw in the towel’ from a parent standpoint, and go along with what the rheums wanted. So much easier. A busy week like this, with her happy and thriving and right alongside all of her friends, lets me know it has been worth it.

    Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.

    #366106
    Maz
    Keymaster

    Suzanne, thanks for sharing the wonderful news of your little one. So heartening to hear that she is doing so well and living life to the full. She must be an amazing little spirit.

    Gerry, I’m putting it out there for you that you will see some light soon. You’ve had a rough go of things and it’s time you caught a break. Hang in there!

    #366109
    John McDonald
    Participant

    Suzanne – Someone that I haven’t spoken to for ages inquired about you and your sweet girl. So I popped over to see if you were still about. Your post is fantastic, just brilliant. I am so happy. All that physical activity! Fantastic.

    I am doing great as well, BTW. I am completely without symptoms of RA or anything like it and have been for years now. I haven’t taken any meds or abx for a few years now.

    -John McDonald

    #366108
    Suzanne
    Participant

    Hi John! It is great to hear from you! It’s wonderful you have remained off all meds. We are down to zith only, we’ll get there someday!

    Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.

    #366110
    Trudi
    Participant

    @John McDonald wrote:

    I am doing great as well, BTW. I am completely without symptoms of RA or anything like it and have been for years now. I haven’t taken any meds or abx for a few years now.

    Hi John–
    It is so good to have you pop in!! What absolutely wonderful news to hear how well you are doing.

    Yes, isn’t it wonderful how well Suzanne’s daughter is doing!! I am going to copy and paste her post and send it to my daughter. She has a co-worker who has a daughter with JRA. Last time we talked about her, my daughter told me she is on some kind of a once-a-month treatment which takes 5 hours and is horribly painful. I’ve been trying to influence her through my daughter to try AP. Hopefully this post from Suzanne might do the trick!

    Take care,
    Trudi

    Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

    #366107
    Jan Lucinda1
    Participant

    My podiatrist has a friend whose daughter has JRA but my podiatrist’s wife works for Amgen so I don’t think I will get into it.

    Suzanne and John- so glad things are going well.

    #366111
    Martina
    Participant

    Hello,
    This Martha with scleroderma. I haven’t been on this board for several years. I was the person John McDonald was speaking of trying to get a hold of Suzanne. I was pregnant with my son who is now 7 while I had scleroderma. He is now 7 and complaining frequently of joint aches. I wanted to speak with Suzanne before I saw the doctor for a dx, etc.
    When I click on her name, I’m not directed to any email. Mine is marthajlucia@gmail.com

    Thanks so much,
    Martha

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