tag:blogger.com,1999:blog-80474150421046115472012-02-16T01:47:41.452-05:00support and general talk about EDS, Ehlers Danlos, Chiari Malformation.Alihttp://www.blogger.com/profile/03784364958878765034noreply@blogger.comBlogger211100tag:blogger.com,1999:blog-8047415042104611547.post-29743375800238251962009-11-06T01:22:00.000-05:002009-11-06T01:22:25.176-05:00

New to me, but I LOVE thIS :) Enjoy: go to http://www.butyoudontlooksick.com/the_spoon_theory/ She wrote an awesome analogy - love it love it

Alihttp://www.blogger.com/profile/03784364958878765034noreply@blogger.com0tag:blogger.com,1999:blog-8047415042104611547.post-56306565120513498582009-11-06T01:20:00.002-05:002009-11-06T01:24:17.418-05:00

Guess time to accept EDS is real. I've been under the impression the good days will come back and STAY! HA! I just spent 2 days in hospital and the Dr. discharged me -Thank goodness. I had my MRG's and wallet card and was able to feel as if the Doctor and nurses listened!! Lately, my fingers aren't working so well, stiff, clumsy feeling. My legs feel like jello and in bed my left hip

Alihttp://www.blogger.com/profile/03784364958878765034noreply@blogger.com1tag:blogger.com,1999:blog-8047415042104611547.post-67002865537797988692009-10-09T16:18:00.002-04:002009-10-09T16:18:58.659-04:00

email me, please?? thanks. ali :)

Alihttp://www.blogger.com/profile/03784364958878765034noreply@blogger.com1tag:blogger.com,1999:blog-8047415042104611547.post-47858340859359394792009-10-07T18:58:00.003-04:002009-10-07T19:20:15.032-04:00

Hello everyone! 2009 has been a year of learning. I spent some time at Shands, only to discover biopsy is not a good test for determining whether or not one truly has EDS..... A time of personal and physical growth, and acceptance. My time in North Carolina this summer gave me room to let go of toxic relationships, and start anew (new beginnings are just that - new, and always available!)

Alihttp://www.blogger.com/profile/03784364958878765034noreply@blogger.com3tag:blogger.com,1999:blog-8047415042104611547.post-375894312794947432009-05-06T21:47:00.002-04:002009-05-06T21:50:37.061-04:00

HELLO TO ALL.....I've been having a bout of writers block. That and time crunches w/ end of school year.I feel very......validated with recent news I received about two physicians who cared for me. "Guinea pig" is THE correct term.I am absorbing this, and letting the news I got settle in.My apologies to those who read what I've written, as my writers block is at its highest peak!So say a prayer

Alihttp://www.blogger.com/profile/03784364958878765034noreply@blogger.com1tag:blogger.com,1999:blog-8047415042104611547.post-86898698164680614522009-04-07T17:12:00.000-04:002009-04-07T17:13:26.193-04:00

Long weak - week. Fatigued.I'll catch up later. Please email me at alinc4@gmail.com if u have questions. I'm happy to reply.3 of my 4 children have ACM and EDS.I hope everyone is doing great.TTYS,ali

Alihttp://www.blogger.com/profile/03784364958878765034noreply@blogger.com0tag:blogger.com,1999:blog-8047415042104611547.post-37813795361723490312009-03-22T00:12:00.004-04:002009-03-25T19:23:26.573-04:00

Hello Everyone!!About SLEEP - it DOES work :). (yes Mom, you are correct!) (I finally realized - AKA - accepted - a GOOD NIGHT's SLEEP helps me. Mentally, physically, and emotionally. This equates to going to sleep, not just bed, before 10-11 pm. I am a bred night owl. I LOVE being a Night Owl. I have adored my quiet darkness, typing alone, relishing in the sounds of the dark that disappear from

Alihttp://www.blogger.com/profile/03784364958878765034noreply@blogger.com0tag:blogger.com,1999:blog-8047415042104611547.post-34973525797392170762009-03-16T18:39:00.003-04:002009-03-16T19:04:28.991-04:00

A TRIP TO SHANDSI recently was in Gainesville, Fl at Shands Hospital. I participated in a study which included taking a biopsy taken from my upper arm.(and the Doctor who injected me with lidocaine was GOOD!! :) The Genetics Department at Shands was professional and very compassionate, and friendly. It stymied any hesitation I may have had. I participated because I want to know what type I

Alihttp://www.blogger.com/profile/03784364958878765034noreply@blogger.com0tag:blogger.com,1999:blog-8047415042104611547.post-26536537226464742252009-03-16T18:25:00.003-04:002009-03-16T18:38:45.490-04:00

hello fellow EDs'ers...THE EHLERS DANLOS NATIONAL FOUNDATION IS HOPING, AND ASKING CONGRESSMAN TO MAKE MAY NATIONAL EDHLER-DANLOS MONTH.Please join the foundation as a member and also, help us grow by subscribing to the quarterly newsletter!Why the appeal? Because if ANYONE with EDS reads this blog, the Ehlers-Danlos National Foundationoffers support and education, along with physician

Alihttp://www.blogger.com/profile/03784364958878765034noreply@blogger.com1tag:blogger.com,1999:blog-8047415042104611547.post-18619097369624307882009-03-13T06:25:00.005-04:002009-03-16T19:08:49.745-04:00

EDS - and PAINWell.....I recently experienced a long bout of intractable pain. I was admitted to the hospital, and although already on a regime of medications (which I do not like taking at al), they added MORE! SO, I slept. A lot. They complained I was on too many narcotics - but......they had prescribed more for me while in hospital. Get the oxymoron?I know we wake up daily wondering what the

Alihttp://www.blogger.com/profile/03784364958878765034noreply@blogger.com0tag:blogger.com,1999:blog-8047415042104611547.post-4633951982120651412009-03-13T06:14:00.002-04:002009-03-13T06:46:03.398-04:00

SKIN TEARS ```Skin Tears may occur spontaneously, but usually they occur at surgical sites.If you have experienced or do experience a skin tear, immediately get seen by your physician.I experienced a skin tear last fall and it took three months to heal. Of course, the site had been opened three times previously, which compromised an already delayed healing site. It was a bit painful.I am blessed

Alihttp://www.blogger.com/profile/03784364958878765034noreply@blogger.com0tag:blogger.com,1999:blog-8047415042104611547.post-63063155951731206712009-03-13T06:13:00.000-04:002009-03-13T06:14:47.378-04:00

Hello EDS'ers!!I'm finally back in the saddle, writing on my blog and dedicated to keeping it updated!Thank you to everyone who reads it and thank you for coming back to it... new blogs...coming right up!A L I ~~~

Alihttp://www.blogger.com/profile/03784364958878765034noreply@blogger.com0tag:blogger.com,1999:blog-8047415042104611547.post-68700820544192911862008-12-30T23:12:00.002-05:002009-03-13T06:58:35.628-04:00

Why don't we view EDS as a blessing.....?HAPPY NEW YEAR TO ALL.ALi

Alihttp://www.blogger.com/profile/03784364958878765034noreply@blogger.com6tag:blogger.com,1999:blog-8047415042104611547.post-91875425170919693932008-09-03T21:45:00.000-04:002008-09-03T21:51:57.046-04:00

Skin Tears are a real possibility with people suffering from EDS.Usually, it occurs at a compromised site - previous surgical scars, as the skin's elasticity is weakened. Skin tears do not need to be injury induced;rather, they may occur quite suddenly.Please always keep an eye on scars, especially the 'cigarette burn' type. Since healing is delayed in EDS patients, wound management is a high

Alihttp://www.blogger.com/profile/03784364958878765034noreply@blogger.com0tag:blogger.com,1999:blog-8047415042104611547.post-60841148830235071902008-08-29T01:19:00.000-04:002008-08-29T01:28:52.614-04:00

Hello EDS'ers..... the weather has been playing with me again - South Florida is wonderful if I could obtain a job predicting rain, I'd have better batting averages than weathermen!EDS took hold of me this summer after a delicious remission. I am happy to say I am falling back into remission.I have not yet seen Dr.F up North, but mixed reports plus the no cure thing has me questioning the

Alihttp://www.blogger.com/profile/03784364958878765034noreply@blogger.com0tag:blogger.com,1999:blog-8047415042104611547.post-36583718064652669892008-08-25T23:50:00.000-04:002008-08-25T23:53:24.024-04:00

Hello world.....I see everyone is so enthralled with this blog!The comments are overhwhelming me :)If you've been to The Chiari Institute or have general EDS questions please email me or comment!EDS has loosened its hold recently.....but I've also been taking better care of myself emotionally, mentally, and physically!So PLEASE spread the word and lets BLOG about EDS and CURE IT!ALI

Alihttp://www.blogger.com/profile/03784364958878765034noreply@blogger.com1tag:blogger.com,1999:blog-8047415042104611547.post-64895967592789055382008-07-10T17:43:00.000-04:002008-07-10T17:45:41.151-04:00

Hello fellow EDS'er's!I'm in the SMoky Mountains doing a lot of writing, reading, and being calm.Unfortunately, internet accessibility is limited and quite rare where we are (nearest town is 20 minutes away).I hope everyone who is attending the EDNF conference in the last of this month has a fantastic time! It will be in Houston, TX - you should be there!!I will catch up when I have more than ten

Alihttp://www.blogger.com/profile/03784364958878765034noreply@blogger.com0tag:blogger.com,1999:blog-8047415042104611547.post-85965860111901063962008-06-26T16:44:00.000-04:002008-06-26T16:45:34.510-04:00

Hi, I am currently in the Smoky Mountains without internet capabilities.Please keep visiting the BLOG site, will update it with multiple EDS related blogs when I return to the "real world"!!Keep reading...happy days to all ~~~ALI

Alihttp://www.blogger.com/profile/03784364958878765034noreply@blogger.com0tag:blogger.com,1999:blog-8047415042104611547.post-42488514372817648162008-06-11T09:02:00.000-04:002008-06-11T09:14:17.403-04:00

Is there someone out there asking, what the heck is EDS? EDS is a group of hereditary connective tissue disorders. Within the medical community, there are two schools of thought -= six subtypes of EDS, or ten. The number is not the primary concern - finding a treatment plan, cure, or researchers finding a gene responsible for this disorder is necessary, if EDS is to properly offer the sufferers'

Alihttp://www.blogger.com/profile/03784364958878765034noreply@blogger.com0tag:blogger.com,1999:blog-8047415042104611547.post-26380629088056755802008-06-11T08:53:00.000-04:002008-06-23T12:59:21.889-04:00

EDS is a connective tissue disorder that affects many people around the world. Unfortunately, because EDS has not been a forerunner in the medical community, - a "hot topic", public awareness and education in addition to medical community awareness is not where it should be.Ehlers Danlos is NOT a myth.It is a disorder, a syndrome.It is real.It is time to recognize EDS now, and reach out and

Alihttp://www.blogger.com/profile/03784364958878765034noreply@blogger.com0tag:blogger.com,1999:blog-8047415042104611547.post-54683801616931329042008-06-10T21:13:00.000-04:002008-06-10T21:16:41.689-04:00

Welcome to this spectacular EDS site! I just started this site on the evening of June 10, 2008, in the middle of a thunderstorm.All comments are welcome, excluding vulgarity and crude, rude, and unattractive.Feel free to peruse the site.Keep returning: MORE TO COME!Ali~~~

Alihttp://www.blogger.com/profile/03784364958878765034noreply@blogger.com0