tag:blogger.com,1999:blog-7755103340565042342.comments2021-04-29T14:36:39.748-05:00Our Journey with Ehlers-Danlos SyndromeBugsMomhttp://www.blogger.com/profile/12782383329608796757noreply@blogger.comBlogger175125tag:blogger.com,1999:blog-7755103340565042342.post-13323311446162612002010-01-01T23:25:55.906-06:002010-01-01T23:25:55.906-06:00Hi! I just recently was diagnosed with EDS and I h...Hi! I just recently was diagnosed with EDS and I have an appt with a geneticist coming up. But I went to a cardiologist and had a 3D echo done and they found a hole in the ventricular septum and possibly the atrial one. But they had to look really hard and specifically for that so when you go make sure they check for it. Maybe mention something about how people with EDS have a higher chance for Rachellenoreply@blogger.comtag:blogger.com,1999:blog-7755103340565042342.post-5661068792950257972009-12-21T19:16:12.991-06:002009-12-21T19:16:12.991-06:00Hi B,
I'm thinking of you and hope you are ab...Hi B,<br /><br />I'm thinking of you and hope you are able to find some kind of balance for a while amongst the chaos. At least there is winter break from school? You are such an amazing woman and I always wish you strength. <br /><br />I'm glad to hear that you are working for your own health as well. Yes, that is a LOT of pain med and a very high tolerance, but having a little one in elisehttps://www.blogger.com/profile/18267941174645425325noreply@blogger.comtag:blogger.com,1999:blog-7755103340565042342.post-78193001736869874032009-12-20T21:01:33.495-06:002009-12-20T21:01:33.495-06:00Hope you are both feeling better soon. I remember ...Hope you are both feeling better soon. I remember the days of missing school due to migraines and pain and wouldn't wish it on another. Thinking of you both.Victoriahttps://www.blogger.com/profile/13418485980973354059noreply@blogger.comtag:blogger.com,1999:blog-7755103340565042342.post-83888917015129486612009-12-19T14:36:08.931-06:002009-12-19T14:36:08.931-06:00Sorry to hear you guys have hit a rough patch. Ple...Sorry to hear you guys have hit a rough patch. Please know you guys are in our thoughts!! Bug is such a hard worker, I'm very impressed by her determination. Best Wishes for the Holidays and A Happy New Year.<br /><br />NicoleGumby / Mommy Zebrahttps://www.blogger.com/profile/17521752634336153457noreply@blogger.comtag:blogger.com,1999:blog-7755103340565042342.post-7462346029044728782009-10-03T16:22:36.843-05:002009-10-03T16:22:36.843-05:00Hi,
My name is Lisa, im 16, just found your blog f...Hi,<br />My name is Lisa, im 16, just found your blog from someone else. My mom and i run the Florida chapter of EDNF, and im on a search right now for a pen pal for one 9yr old boy. I was wondering if your children were close to that age and interested or if you knew of someone else who might be.<br />If you could email me at engodo2525@bellsouth.net that would be great. I'm new with the lisa simmonsnoreply@blogger.comtag:blogger.com,1999:blog-7755103340565042342.post-22603757784686187572009-10-02T03:19:52.089-05:002009-10-02T03:19:52.089-05:00Thats awesome news that she was able to come to yo...Thats awesome news that she was able to come to you with her needs and wants. Wonderful job establishing that open communication, she sounds like a very rell rounded little lady. Good luck with Everything!! Keep us posted.<br /><br />NicoleGumby / Mommy Zebrahttps://www.blogger.com/profile/17521752634336153457noreply@blogger.comtag:blogger.com,1999:blog-7755103340565042342.post-38711392837872646542009-09-25T15:41:13.466-05:002009-09-25T15:41:13.466-05:00Hello, my mother and my step brother both have eds...Hello, my mother and my step brother both have eds and we go to the meetings, But I was diagnosed not to have eds. The thing is I had surgery for scoliosis (2 titanium rods 12 screws)and it has been okay for a year or two (Im 19) But now I am starting to have popping in all my joints when doing daily things like picking up a glass to drink, Also after being at college all day and I get home my klingonhttps://www.blogger.com/profile/05806855873327555378noreply@blogger.comtag:blogger.com,1999:blog-7755103340565042342.post-49514784674163389322009-09-25T05:58:44.753-05:002009-09-25T05:58:44.753-05:00How wonderful! And congratulations on the good, h...How wonderful! And congratulations on the good, hard work you've done to help Bug get to this point! It is so hard to advocate for oneself, and I know you're proud.Sr. Heatherhttps://www.blogger.com/profile/07927398954456388764noreply@blogger.comtag:blogger.com,1999:blog-7755103340565042342.post-62458770824773626972009-08-22T16:26:09.599-05:002009-08-22T16:26:09.599-05:00Bugs mom it may be har gailbladder !!!! i had th...Bugs mom it may be har gailbladder !!!! i had that same thing back in dec please if you have any ??? please please call me <br />727244-2332Sickly Florida Girlhttps://www.blogger.com/profile/17223081376142376830noreply@blogger.comtag:blogger.com,1999:blog-7755103340565042342.post-50419242385629604152009-08-22T07:56:57.886-05:002009-08-22T07:56:57.886-05:00Makes you wonder what you were waiting for, doesn&...Makes you wonder what you were waiting for, doesn't it? I love mine, too.yanubhttps://www.blogger.com/profile/16216993058216698199noreply@blogger.comtag:blogger.com,1999:blog-7755103340565042342.post-12655389886923346412009-08-22T00:52:15.556-05:002009-08-22T00:52:15.556-05:00Wow thats wonderful, glad to hear you had such a g...Wow thats wonderful, glad to hear you had such a great experience with the ring splints! Please let us know how they feel in a week or so. I have been thinking about those for some time but never took that leap. Enjoy your weekend.<br /><br />NicoleGumby / Mommy Zebrahttps://www.blogger.com/profile/17521752634336153457noreply@blogger.comtag:blogger.com,1999:blog-7755103340565042342.post-26792208400174867532009-08-20T17:00:24.563-05:002009-08-20T17:00:24.563-05:00Hi I voted for Samantha also not just because of y...Hi I voted for Samantha also not just because of your polite request but also because I genuinely felt she was the best. I have EDS as does my daughter. Have your blog in my reader - and reading of others experience with EDS helps me cope with ours. Thank you.Acheloishttps://www.blogger.com/profile/13489197508242501952noreply@blogger.comtag:blogger.com,1999:blog-7755103340565042342.post-56069400087069106602009-08-15T18:42:35.283-05:002009-08-15T18:42:35.283-05:00I've voted for Samantha, not only because you ...I've voted for Samantha, not only because you told me to ;) But also because she's actually the best.<br />I think that it's good that she isn't brought down by her EDS, that she is making the best of it and doing what she can do, and doing it well.<br />You've got me curious now, I'm going to go and find out all the things that EDS kids <i>can</i> do.<br />Wishing you, Jaznoreply@blogger.comtag:blogger.com,1999:blog-7755103340565042342.post-74461821093483727422009-08-13T18:34:59.176-05:002009-08-13T18:34:59.176-05:00Hi My name is Nicole and I just wanted to let Bug ...Hi My name is Nicole and I just wanted to let Bug know that I have voted for her friend a few times! I have been following your blog for a while now and I love hearing about everything. I have EDS also and so does my son, hes four and will be 5 in October. He will be starting school in September so I am very anxious about what that will bring, his fingers and writing have always been a challenge Gumby / Mommy Zebrahttps://www.blogger.com/profile/17521752634336153457noreply@blogger.comtag:blogger.com,1999:blog-7755103340565042342.post-30540998505225874672009-08-04T19:57:27.717-05:002009-08-04T19:57:27.717-05:00Sounds like Bug is a heckuva kid. I'm 24 and ...Sounds like Bug is a heckuva kid. I'm 24 and I probably wouldn't be getting my dental checkup if I hadn't recently discovered the miracle that is sedation dentistry. If only I'd known as a kid...Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-7755103340565042342.post-67568542036979839142009-07-26T12:17:40.582-05:002009-07-26T12:17:40.582-05:00I've been in much the same position.
My back,...I've been in much the same position.<br /><br />My back, shoulders, and hips recover...but only so much. And then I'll re-injure them in the same way, but because I already had PT for that particular type of injury, I can't get another round of it. Drives me CRAZY!<br /><br />I get 60 calendar days to have PT per injury - usually ends up meaning about 16 sessions, which I'm sureAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-7755103340565042342.post-39360177142090879062009-07-23T14:18:14.722-05:002009-07-23T14:18:14.722-05:00Hi,
I have been reading up on some of your post a...Hi,<br /><br />I have been reading up on some of your post and it has made me become more familiar with this condition. I actually have a friend who has Ehlors-Danlos and never quite understood the pain it can cause on joints and muscles. I feel that this information would impact many parents who have children with this condition. I'm Hua, the director of Wellsphere's HealthBlogger Huahttps://www.blogger.com/profile/04703549526338294520noreply@blogger.comtag:blogger.com,1999:blog-7755103340565042342.post-24173285469822217362009-07-20T18:54:03.601-05:002009-07-20T18:54:03.601-05:00I have your blog in my reader. I have EDS as does...I have your blog in my reader. I have EDS as does my 19 year old daughter. My heart goes out to you. I understand the frustrations so so well, you have my empathy. The anger is natural but emotionally exhausting. Please keep posting it helps in some small way to share. Take care.Acheloishttps://www.blogger.com/profile/13489197508242501952noreply@blogger.comtag:blogger.com,1999:blog-7755103340565042342.post-13760486038222309792009-07-15T13:39:16.335-05:002009-07-15T13:39:16.335-05:00hi there!! i have an EDS blog i thought you might ...hi there!! i have an EDS blog i thought you might be interested in following: http://DanielleDavisEDS.blogspot.com <br /><br />I am so sorry to hear about the insurance issues. I know all the drama with them - I went through it for years and just had to give up going to any PT or chiro or any other appts that they deemed not covered because they weren't showing improvement. improvement is Vegan Danielle Davishttps://www.blogger.com/profile/04975451419609335926noreply@blogger.comtag:blogger.com,1999:blog-7755103340565042342.post-51697727581607486702009-07-13T17:22:33.866-05:002009-07-13T17:22:33.866-05:00Bug's mom,
I wish I could give you a really bi...Bug's mom,<br />I wish I could give you a really big hug, and tell you to keep your chin up.<br /><br />All I can say is keep fighting, because it'a people like you that make this world a better place.<br /><br />So... *HUGS* to both you and Bug, just a light squeeze for Bug though, don't want to dislocate anything. Keep finding things that make you smile.<br /><br />BubbleGirlBubbleGirlhttps://www.blogger.com/profile/00932935674980101062noreply@blogger.comtag:blogger.com,1999:blog-7755103340565042342.post-26386850216251331332009-07-10T00:20:47.012-05:002009-07-10T00:20:47.012-05:00I hate to hear that she is going through this! I ...I hate to hear that she is going through this! I cannot imagine going through this at her age! I struggle to get through some days, and I am 18! My EDS didn't get really bad until I was almost 17! I always had dislocations and weak joints that I was in and out of PT for, but it didn't hold me back or prevent me from having a "normal" childhood.<br /><br />I see that Bug is aMackenziehttps://www.blogger.com/profile/08714456023271355846noreply@blogger.comtag:blogger.com,1999:blog-7755103340565042342.post-28581944069778419022009-07-01T17:12:16.783-05:002009-07-01T17:12:16.783-05:00Hi lovely,
I've read somewhere that EDS kids a...Hi lovely,<br />I've read somewhere that EDS kids are susceptible to stomach migraines. Migraines in kids in general tend to manifest in the stomach as well. <br />Three times is good for most scientific tests so I hope the results are positive and one more issue can be knocked off the list of I-don't-knows. I get migraines, they suck, and I've learned to deal with them. Catching themelisehttps://www.blogger.com/profile/18267941174645425325noreply@blogger.comtag:blogger.com,1999:blog-7755103340565042342.post-26907943809712645992009-07-01T05:56:12.982-05:002009-07-01T05:56:12.982-05:00I was doing some research on the internet about an...I was doing some research on the internet about an immovable shoulder, and stumbled across Girl, Dislocated's blog. From there I stumbled here. I, previously, had no idea what EDS was, and was kinda shocked to hear that there was a genetic disease out there that could do that.<br />After reading all of both your blogs, I am well-imformed and ready to not dial 911 when someone is screaming at Jaznoreply@blogger.comtag:blogger.com,1999:blog-7755103340565042342.post-26260308130241594992009-06-29T16:58:28.775-05:002009-06-29T16:58:28.775-05:00It's good to hear you're getting answers, ...It's good to hear you're getting answers, and that something is helping Bug's tummy!BubbleGirlhttps://www.blogger.com/profile/00932935674980101062noreply@blogger.comtag:blogger.com,1999:blog-7755103340565042342.post-37551011949346289202009-06-15T12:10:50.494-05:002009-06-15T12:10:50.494-05:00I think the cell phone was a great idea for bug . ...I think the cell phone was a great idea for bug . I know how is weird to tell other pain about pain and if something was to come out she can just call you or her daddy.<br /><br />Plus it lets her see that she can still have a some what normale life and have the freedome but she will not have to worry about finding away to get a hold of you two if she was to get hurt..<br /><br />HAVE A GREAT ANDSickly Florida Girlhttps://www.blogger.com/profile/17223081376142376830noreply@blogger.com