tag:blogger.com,1999:blog-4610416690314330157.post5352904232001746857..comments2023-10-29T05:48:33.771-07:00Comments on Jennas JIA & Uveitis: Amy Cunninghamhttp://www.blogger.com/profile/03415639964305589674noreply@blogger.comBlogger6125tag:blogger.com,1999:blog-4610416690314330157.post-83356017985975595182011-01-16T22:46:41.029-08:002011-01-16T22:46:41.029-08:00She has JDM!!! Ok, I'm only getting excited b...She has JDM!!! Ok, I'm only getting excited because NO ONE has JDM! Well, my daughter does. Amy, ask Alex for clues. I love that there are people going through it that want to talk and explain. That makes me so happy, being on the side of sometimes needing explanations! <br />Yes, that does make sense. I do that with things, too. Not often, but I have done it. I get it. Thank you!!! <br />(I sooooooo have to friend her...)Amadayhttps://www.blogger.com/profile/07951303205524536934noreply@blogger.comtag:blogger.com,1999:blog-4610416690314330157.post-59166441792276362552011-01-02T13:22:34.918-08:002011-01-02T13:22:34.918-08:00You're very welcome. You don't need to tha...You're very welcome. You don't need to thank me! I'm just glad that it helped some.<br />And while I really appreciate the amazing compliment, I am no angel.<br />God bless,<br />Alex<br /><br />PS: Please pardon the choppy comment. There are two little boys (okay, 12 & 13, actually...not so little anymore) having a sleepover in the background, who definitely have <i>no</i> mobility issues, judging by the flying Nerf darts and buzzing lightsabers and. . .Alexandra {{Awareness Warrior}}https://www.blogger.com/profile/02073015344421698020noreply@blogger.comtag:blogger.com,1999:blog-4610416690314330157.post-15028835605699980472011-01-01T18:26:24.763-08:002011-01-01T18:26:24.763-08:00Alex, your logic makes COMPLETE sense. Thank you S...Alex, your logic makes COMPLETE sense. Thank you SO much for explaining all of this to me. I really cannot thank you enough. I pray that one day no child should suffer. Until then, thank God we have angels like you.Amy Cunninghamhttps://www.blogger.com/profile/03415639964305589674noreply@blogger.comtag:blogger.com,1999:blog-4610416690314330157.post-4932642240362698362010-12-29T16:32:13.050-08:002010-12-29T16:32:13.050-08:00WHY DO THEY HIDE IT? WHY?!
My name is Alex; I'...<i>WHY DO THEY HIDE IT? WHY?!</i><br /><br />My name is Alex; I'm @AlexaMikaela on Twitter. I was dx'ed with juvenile dermatomyositis in July '05, less than a month after my 10th birthday. And, it doesn't matter that I'm not 6 like Jenna, or 8, or 10 like I was when we finally got my diagnosis, because I'm 15, and I often still hide my pain until it's unbearable. Sometimes I still try then. It doesn't work, though. I limp, or fall, or just don't move until my mom catches on and then she still has to force me to take pain medicine. We shout at each other over it, because <i>I am not taking one more pill if it kills me!</i>. I think for me that's what it amounts to with my pain medicine -- not wanting to take <i>one more pill</i>. It's like, if I start it, will I ever stop it, or will it be like all these other meds? If I admit I'm in pain, I admit something's wrong. If I don't admit something's wrong, than there's nothing wrong and everything's okay, and I don't need to worry because there is no way that I could relapse if I'm not hurting...<i>right???</i> I know my logic doesn't make much sense, but I don't always realize I'm doing it. Jenna probably doesn't, but she might, at least subconsciously.<br /><br />If I'm not in pain then nothing is wrong. <i>(I </i>am<i> in pain)</i><br />If I ignore that I'm swelling it will just go away. (<i>Not always</i>)<br />If I wait it out, the purple will go away. (<i>It doesn't change that it's there</i>)<br /><br />There's a lot of reasons that we hide it. I'm better about it now, but I'm also very good at hiding it, too, when I do.<br /><br />---<br /><br />As I tweeted to you:<br />"I'm glad I'm the sick child & not the parent."Alexandra {{Awareness Warrior}}https://www.blogger.com/profile/02073015344421698020noreply@blogger.comtag:blogger.com,1999:blog-4610416690314330157.post-68386086671263902722010-12-26T17:42:34.900-08:002010-12-26T17:42:34.900-08:00Girl I cannot IMAGINE how hard the impact of the s...Girl I cannot IMAGINE how hard the impact of the steroids have been on y'all!! I bet that this song struck a cord with you and Emily. For me it was a few lines in particular. "You are made for so much more than all of this." "You are His." "Praying that you have the heart to fight, 'cause you are worth more than what is hurting you tonight." :)Amy Cunninghamhttps://www.blogger.com/profile/03415639964305589674noreply@blogger.comtag:blogger.com,1999:blog-4610416690314330157.post-1833770808086403632010-12-26T12:43:36.093-08:002010-12-26T12:43:36.093-08:00I missed Thursday night. I was 98% out of it. So...I missed Thursday night. I was 98% out of it. Sorry :( I finally got Em to tell me a bit more often than she used to but we still struggle with the same things. The purple toes make me think of Raynaud's. Watch the hands and feet. True Raynaud's goes white as the blood stops, then purple as it starts to move, then red as it goes rushing back. It hurts, too. I hope that it isn't, only because it's annoying. Nothing HUGE, but very annoying. <br />Also, I had felt the connection with "BeautifuL" as well. Especially because of the Prednisone weight. Em is so bothered by it but when we first heard the song it was like "See? This is what I've been trying to say". I <3 MercyMe!!!Amadayhttps://www.blogger.com/profile/07951303205524536934noreply@blogger.com