Wednesday, October 10, 2012

Not doing so well right now...

My poor little guy isn't doing well. He got a full vial of mtx on Monday night which made him SO sick yesterday. I had to pick him up from school b/c he was weak and vomiting. I checked him over and his fingers looked even worse. I forwarded pics to his Rheumy who said he needed to be on steroids for 6 weeks until the chemo kicks back in. Everything is a mess right now, but he sure is a trooper! He tries so hard not to complain. Yesterday morning, the substitute music teacher got an attitude with him when he asked for a chair to sit in b/c sitting with his legs crossed "indian style" is very painful for him. When he asked for a chair and said that he has arthritis she said "Look, kid so do I now sit down and be quiet!" Leigha said that Wesley did as he was told with tears in his eyes forcing his little legs to cross. I called the school and had a few choice words! His teacher is excellent though and she said that she would address it! He didn't feel well and tried so hard to stick it out and them to have a snotty teacher be so rude to him like that, made my blood boil! If he would have told me when I picked him up, I would've marched right into that room, but he didn't want to get her into trouble, so Leigha told me about it when I picked her up. Wesley has such a great heart! So... That is the latest. We are in a very rough patch with him right now and could use all of the prayers we can get.

1 comment:

  1. Hi Amanda,

    So sorry to post this on your blog, I just didn't know how else to reach you!

    I'm Natalia, the Community Coordinator at WEGO Health, a small online community of Health Activists that work to create resources and spread education to empower online health leaders. I am currently working on a project with JA and in my research I came across your blog. You have really created a great resource for the online JA community and as such I thought you might be interested in participating in our upcoming arthritis related Health Activist Insight Group. Our Insight Group will focus on JA, specifically SJIA and I would love to include your perspective!

    We have set a date for the panel, it will take place next Thursday, November 15th. We will be holding four, one hour long sessions to accommodate everyone's schedules. They will take place at Noon ET, 4PM ET, 6PM ET and 9PM ET.

    Just to give you a little more background about the panel, the way the panel will work is each participant will call into a conference call and will also login to an online meeting where they will be able to see a moderator from WEGO Health go through a power point presentation. We will just be asking questions about the online SJIA and JA communities, gaps in education that may exist and what kinds of resources could be created to empower the community. In this particular insight group we will be discussing some topics around biologic treatments as we have heard from some community members that there seems to be a gap in knowledge about some of them so it would be helpful if participants had some knowledge level around them. We are really just looking for candid feedback and thoughts from everyone on the call so there's no need to prepare anything. We keep these very casual. Each participant will receive a $35 gift card as a thank you for giving up your time. This particular panel is being sponsored by a pharmaceutical company, the company wants to understand more about the online community and run some ideas by you guys to see what kinds of resources they could build to help the community. I wanted to make sure you knew that up front in case you had any questions or were uncomfortable with that.

    Also, if you know any other SIJA or JA Health Activists who might be interested in this opportunity please feel free to forward along this email or send me their contact and I will reach out to them directly.

    I hope all is well and I really look forward to hearing back from you!

    All my Best,


    Natalia Forsyth
    Community Coordinator
    WEGO Health