Re: [JRA]Colleen

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nancy barnes <nancyb315@...> wrote: Hi Colleen,I apologize for the delay in responding - we decided to take a few days away to try and relax. First trip of any type in over two years that did not involve an ER visit - hooray!I must say I am feeling less than confident with a number of these specialists; it was unfortunate, some of these drs seemed unable to provide an objective evaluation. At this point, the most important thing is to move forward, and hope that the amended treatment plan will bring

some normalcy back in her life. I shared with her about ; while I think it would be wonderful for her to connect with someone like (especially someone who shares her passion for water polo), she is very shy, and did not warm to the idea. For , it usually takes a structured meeting (e.g. she met a girl who shares same anti-body deficiency at Painted Turtle family weekend - it was an amazing weekend for her, but took activities to break the ice). I appreciate the offer and If she changes her mind, I will definitely let you know. I hate to imagine that it could be until next May (she turns 18) or July (AF conf) before she meets some teens with jra.How is Caitlin doing? I think of you both often and how strong you both are. Once we settle into her new treatment routine (on wait list for CHOC therapies and waiting to start mtx), I would like to help with the committee. As I said,

I don't have experience, but I take direction well.Thank you very much for the thoughts and prayers - it would be wonderful to see feeling a little better.nancyColleen <bookissmom > wrote: Hi - I am sending thoughts, prayers and best wishes your way. I am sorry to hear of 's diagnosis.... I feel especially bad because I know most of the docs you have been to.... and it's been very frustrating to watch how frustrating the whole process has been. I know it has really taken it's toll on the whole family... and I can hear that is really done with the whole process, when it many ways, it's just beginning. I wish I had some great words of comfort to

share that would help ease you now. The only thing I can come up with is the story of another local girl named . She also has poly JRA, though she did not have the stomach involvement and she not have the same trials obtaining diagnosis. She is, however, and avid swimmer and water polo player. Two years ago, in her sophmore year, she had a flare so bad that she was hospitalized for several months. She essentially had to learn to walk again and had intensive PT/OT. Needless to say, she missed a ton of school. I met her shortly thereafter, and she was a bit quiet, sullen... the anger was barely buried under the surface. She battled back in an unbelievable manner.... she responded very well to Enbrel and her symptoms have been well managed since then. She regained her strength, caught up in school, and started back swimming and training for water polo. She is tall, srong, tanned and very healthy.... and

she smiles much of the time. decided to make something else of the experience and started a group at her high school called Kids Helping Kids - they make gift bags for children hospitalized for long periods of time. It's been a great outlet for her.... She lives in Orange County. I know the local AF has a young adult group for the 18 and over crowd - but is right in the limbo land for age. If you think would like to talk to , I can get her contact info for you.... I'm sorry that to this point, my help has not really been helpful. The docs I recommended did not work out... and things have continued to be a struggle. But, please.... if there is anything I can do, just let me know. I'm a local call (well almost) to you... if you ever need to talk. I hope things start improving soon- Colleen (mom to Caitlin, 9, systemic) Be a better Globetrotter. Get better travel answers from someone who knows. Answers - Check it out. Looking for a deal? Find great prices on flights and hotels with FareChase.

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