tag:blogger.com,1999:blog-3876612643944811409.comments2022-02-28T04:23:34.632-05:00My Life With Ehlers Danlos: At home mom, Part time student, Full time patient.Chiari zebrahttp://www.blogger.com/profile/10306456262376825862noreply@blogger.comBlogger3125tag:blogger.com,1999:blog-3876612643944811409.post-10764883161432623142022-02-28T04:23:34.632-05:002022-02-28T04:23:34.632-05:00Hello! I have the same issues! It's finally c...Hello! I have the same issues! It's finally catching up with me in middle age. I wish you the best! You're seriously like my EDS symptoms twin! It is uncanny! I hope this comment makes you feel less alone as a zebra, as your pictures did for me. I appreciate finding this page, and am sorry for your struggles.<br /><br />Anecdote: I was washing my hands earlier and they decided to vasospasm, or go cold suddenly and unexpectedly, and the in reality lukewarm water felt like it was steaming hot tapwater, but on my palms and fingers only.<br /><br />Outside in the winter, without gloves I can't last 5 minutes anymore. I used to love winter. Now as u probably know, I have to overdress just in case of an "attack."<br /><br />I found this blog because I'm having a bad health day and am still learning about the condition. I hope to spread the word about our condition in my area. Most of the health practitioners and even imaging technicians have been fairly knowledgeable and considerate ever since I learned I have it (January). It's the general public I have the most interest in raising some awareness to. Hang in there, twin, your signs are just slightly worse than mine at a glance, but I have a light caramel shade of skin covering it up a bit.<br /><br />Sincerely,Egbrthttps://www.blogger.com/profile/14456502285378631926noreply@blogger.comtag:blogger.com,1999:blog-3876612643944811409.post-54287833991651222892020-11-14T22:25:05.057-05:002020-11-14T22:25:05.057-05:00I used to use a website that created for people wi...I used to use a website that created for people with EDS, and she started selling because people needed them, and she sold them really cheap. But after, I guess becoming more a "brand" starting increase her prices and removed her initial message about selling to those in need. She became consumed with greed. So I cannot recommend her or her site anymore. I will hunt for another site if you are still looking. Or create my own video on how to make your own. I know it is really inexpensive because I already bought the material at less than $6. I just need to make them. Which I know isn't difficult; even with our limited or varying range. Let me know what you're looking for and <br />I can direct you more properly. Sorry for the late reply. I hope this reaches you. <br />part time patienthttps://www.blogger.com/profile/01425192364102778749noreply@blogger.comtag:blogger.com,1999:blog-3876612643944811409.post-68562551641974049902020-03-26T09:37:02.516-04:002020-03-26T09:37:02.516-04:00I am so sorry that no one posted to request the vi...I am so sorry that no one posted to request the video. Six years later I stumbled across this story and was hoping to find the video link at the bottom. Place, if you are still monitoring, I would love to see the video. I type this in the cheap plastic, dig into the finger, uglier than sin plastic braces.<br />Gumbyhttps://www.blogger.com/profile/05365567447885983547noreply@blogger.com