Guest guest Posted April 30, 2008 Report Share Posted April 30, 2008 Colleen, I know this was for Beth, but I just wanted to say, your poem brought me to tears.....of course, after I put on my make-up. I have lost both of my parents....so it really hit home for me. Thanks for sharing it. Helen Beth Beth- I am so sorry for your loss. My prayers go out to you and your family. I know there is no salve for the heartache. I just have always found this poem comforting in grief. Colleen - mom to Caitlin, 10, systemic Do not stand at my grave and weep, I am not there, I do not sleep. I am in a thousand winds that blow, I am the softly falling snow. I am the gentle showers of rain, I am the fields of ripening grain. I am in the morning hush, I am in the graceful rush Of beautiful birds in circling flight, I am the starshine of the night. I am in the flowers that bloom, I am in a quiet room. I am in the birds that sing, I am in each lovely thing. Do not stand at my grave and cry, I am not there. I do not die. Be a better friend, newshound, and know-it-all with Mobile. Try it now. Be a better friend, newshound, and know-it-all with Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2008 Report Share Posted April 30, 2008 Colleen, Yes that was a very beautiful poem. One I have seen many different times. but also one that brings tears to my eyes because of the special people it brings to my mind. veri Colleen Colleen, I know this was for Beth, but I just wanted to say, your poem brought me to tears.....of course, after I put on my make-up. I have lost both of my parents....so it really hit home for me. Thanks for sharing it. Helen Beth Beth- I am so sorry for your loss. My prayers go out to you and your family. I know there is no salve for the heartache. I just have always found this poem comforting in grief. Colleen - mom to Caitlin, 10, systemic Do not stand at my grave and weep, I am not there, I do not sleep. I am in a thousand winds that blow, I am the softly falling snow. I am the gentle showers of rain, I am the fields of ripening grain. I am in the morning hush, I am in the graceful rush Of beautiful birds in circling flight, I am the starshine of the night. I am in the flowers that bloom, I am in a quiet room. I am in the birds that sing, I am in each lovely thing. Do not stand at my grave and cry, I am not there. I do not die. Be a better friend, newshound, and know-it-all with Mobile. Try it now. Be a better friend, newshound, and know-it-all with Mobile. Try it now. Plan your next roadtrip with MapQuest.com: America's #1 Mapping Site. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2010 Report Share Posted October 6, 2010 Hi -  Posterior for the implant. He had to do some small incisions anterior last time - they had to snip/release a tendon to get her leg straight.... But the scars in front are so small and faded you can't even see. The scar in back is covered by a bathing suit. I find it amazing really - and would love to take a picture... but somehow, I don't think she would let me  Thanks for the good thoughts.... Colleen > > Wow second hip replacement. Will this ever not shock me? > > Amy > > ________________________________ > From: Colleen <bookissmom@...> > > Sent: Tue, October 5, 2010 9:31:20 PM > Subject: Becky.... > > Hi Becky- > > Just wanted to say thanks for the note! It;s so great to see you > on the > boards.... Over the years, you are always available for great > information and > advice - even when has been doing well. I think it's a > tribute to what an > advocate you are - not just for your son, but for all of our kids. > > I'm glad your little football player is doing well! Our kids - > who once would > have played together at a JA conference - would be so shy around > each other > now. Those tween years > > Caitlin has responded very well to Actemra - we're pretty happy > about that. Her > right hip has gone downhill fast though - and her second hip > replacement is > scheduled for November 16. But, she's actually looking forward > to it. Unless > she flares after the surgery - this could mean the first real > pain-free days she > has had in a looooong time. IT was her idea to see the surgeon > again - and he > concurred that it's time. The kids get the week of Thanksgiving > off, and her > surgery is the week prior to that. So... we're planning on her > being back in > school after Thanksgiving.... and it should work if she recovers > as quickly as > last time > > Hope you are enjoying the season with your football star! > Best hopes to you old friend- > Colleen > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2010 Report Share Posted October 6, 2010 lol about the pictures, I would want to do the same. When will she have her surgery? Amy - avery 17 systemic ________________________________ From: Colleen <bookissmom@...> Sent: Wed, October 6, 2010 11:01:48 AM Subject: Re: colleen Hi - Posterior for the implant. He had to do some small incisions anterior last time - they had to snip/release a tendon to get her leg straight.... But the scars in front are so small and faded you can't even see. The scar in back is covered by a bathing suit. I find it amazing really - and would love to take a picture... but somehow, I don't think she would let me Thanks for the good thoughts.... Colleen > > Wow second hip replacement. Will this ever not shock me? > > Amy > > ________________________________ > From: Colleen <bookissmom@...> > > Sent: Tue, October 5, 2010 9:31:20 PM > Subject: Becky.... > > Hi Becky- > > Just wanted to say thanks for the note! It;s so great to see you > on the > boards.... Over the years, you are always available for great > information and > advice - even when has been doing well. I think it's a > tribute to what an > advocate you are - not just for your son, but for all of our kids. > > I'm glad your little football player is doing well! Our kids - > who once would > have played together at a JA conference - would be so shy around > each other > now. Those tween years > > Caitlin has responded very well to Actemra - we're pretty happy > about that. Her > right hip has gone downhill fast though - and her second hip > replacement is > scheduled for November 16. But, she's actually looking forward > to it. Unless > she flares after the surgery - this could mean the first real > pain-free days she > has had in a looooong time. IT was her idea to see the surgeon > again - and he > concurred that it's time. The kids get the week of Thanksgiving > off, and her > surgery is the week prior to that. So... we're planning on her > being back in > school after Thanksgiving.... and it should work if she recovers > as quickly as > last time > > Hope you are enjoying the season with your football star! > Best hopes to you old friend- > Colleen > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2010 Report Share Posted October 10, 2010 Thank you for sharing that, " or us – it was like the ground opened up and sent us down the rabbit hole to an alternate world – immediately to a dark, unknown space. It was healthy to sick in sixty seconds… well, in a few days, but it felt like minutes. " Ya wow, I still can't believe how quickly it happened. I thought they were crazy when they said arthritis that causes fever, honestly it didn't even seem like a possibility, my son was sick! He didn't have arthritis. don't I know differently now. Honestly I didn't know this had ever happened to anyone else, before this past month. And even in the beginning I couldn't imagine that other kids had gone through this. We got lucky the only test they didn't do was the spinal tap. I do have to call about the pealing hands tomorrow. I will say that the cardiologist that is the kawasaki expert did see him after his second echo and she said he didn't have it cause if he did she'd be all over it. So honestly at this point I'm not ruling anything out. lol amy ________________________________ From: Colleen <bookissmom@...> Sent: Sun, October 10, 2010 8:13:40 PM Subject: nn, Amy updates Hi- Just wanted to thank you both for the updates! nn, I'm glad is doing well on the kineret. I know lots of kids that say that over time, the stinging becomes less and less... I sure hope that is the case for her! Wouldn't it be wonderful if this is the answer!!!! Amy - I'm so sorry to hear of your continued struggle. I meant to post the other day... reading your story, I am reminded again that dealing with diagnosis is parallel to dealing with grief upon a loved one's death. That is, you sort of go through stages of grief - denial, anger, bargaining, depression, acceptance. And it's not a straight line - but a zig-zag back and forth through the stages... feeling OK one day and back to sorrow or anger the next. You mentioned once wanting to know some other onset stories... but I was afraid to post at the time - because I didn't want to scare you. I don't think I could scare you now, because you and your family have already been through heck and back I write a blog on the AF page - and here was my entry about thsoe early days: http://community.arthritis.org/jiamoms/blog/2010/02/09/those-dark-early-days I truly hope the rilonacept works... especially since the kineret had such an immediate response. The peeling is worrisome - you're right, it sounds so much like Kawasaki.... Caitlin has often had a stange, itchy rash on the palm of her hand. Our rheumy has always attributed it to either allergies, or systemic rash - even when she was having no rash anywhere else for years. We're never really sure on that one.... I hope tomorrow is a good day for Avery! I think you said the med came through the hospital pharmacy? Maybe they'll work out a payment plan for you. My hospital is always great about letting me make payments. I remember when we got the first bill after her original hospitalization.... when I called to make payment arrangements, they said " If you have half of the total now, we'll take it as payment in full " .... and I was blown away. Since then, I always just call and roll the bills into one and make monthly payments. Our annual out of pocket max Caitlin is $3K....and we'll be hitting that before her surgery for sure. Bright side, right? Best hopes to you- Colleen - mom to Caitlin, 12, systemic Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2010 Report Share Posted October 10, 2010 Thank you for sharing that, " or us – it was like the ground opened up and sent us down the rabbit hole to an alternate world – immediately to a dark, unknown space. It was healthy to sick in sixty seconds… well, in a few days, but it felt like minutes. " Ya wow, I still can't believe how quickly it happened. I thought they were crazy when they said arthritis that causes fever, honestly it didn't even seem like a possibility, my son was sick! He didn't have arthritis. don't I know differently now. Honestly I didn't know this had ever happened to anyone else, before this past month. And even in the beginning I couldn't imagine that other kids had gone through this. We got lucky the only test they didn't do was the spinal tap. I do have to call about the pealing hands tomorrow. I will say that the cardiologist that is the kawasaki expert did see him after his second echo and she said he didn't have it cause if he did she'd be all over it. So honestly at this point I'm not ruling anything out. lol amy ________________________________ From: Colleen <bookissmom@...> Sent: Sun, October 10, 2010 8:13:40 PM Subject: nn, Amy updates Hi- Just wanted to thank you both for the updates! nn, I'm glad is doing well on the kineret. I know lots of kids that say that over time, the stinging becomes less and less... I sure hope that is the case for her! Wouldn't it be wonderful if this is the answer!!!! Amy - I'm so sorry to hear of your continued struggle. I meant to post the other day... reading your story, I am reminded again that dealing with diagnosis is parallel to dealing with grief upon a loved one's death. That is, you sort of go through stages of grief - denial, anger, bargaining, depression, acceptance. And it's not a straight line - but a zig-zag back and forth through the stages... feeling OK one day and back to sorrow or anger the next. You mentioned once wanting to know some other onset stories... but I was afraid to post at the time - because I didn't want to scare you. I don't think I could scare you now, because you and your family have already been through heck and back I write a blog on the AF page - and here was my entry about thsoe early days: http://community.arthritis.org/jiamoms/blog/2010/02/09/those-dark-early-days I truly hope the rilonacept works... especially since the kineret had such an immediate response. The peeling is worrisome - you're right, it sounds so much like Kawasaki.... Caitlin has often had a stange, itchy rash on the palm of her hand. Our rheumy has always attributed it to either allergies, or systemic rash - even when she was having no rash anywhere else for years. We're never really sure on that one.... I hope tomorrow is a good day for Avery! I think you said the med came through the hospital pharmacy? Maybe they'll work out a payment plan for you. My hospital is always great about letting me make payments. I remember when we got the first bill after her original hospitalization.... when I called to make payment arrangements, they said " If you have half of the total now, we'll take it as payment in full " .... and I was blown away. Since then, I always just call and roll the bills into one and make monthly payments. Our annual out of pocket max Caitlin is $3K....and we'll be hitting that before her surgery for sure. Bright side, right? Best hopes to you- Colleen - mom to Caitlin, 12, systemic Quote Link to comment Share on other sites More sharing options...
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