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Our Journey with Ehlers-Danlos SyndromeLearn about Ehlers-Danlos Syndrome in children, and how it effects our family.
http://ehlersdanlos.blogspot.com/
Learn about Ehlers-Danlos Syndrome in children, and how it effects our family.
http://ehlersdanlos.blogspot.com/
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Our Journey with Ehlers-Danlos Syndrome | ehlersdanlos.blogspot.com Reviews
https://ehlersdanlos.blogspot.com
Learn about Ehlers-Danlos Syndrome in children, and how it effects our family.
ehlersdanlos.blogspot.com
Our Journey with Ehlers-Danlos Syndrome: December 2009
http://ehlersdanlos.blogspot.com/2009_12_01_archive.html
Our Journey with Ehlers-Danlos Syndrome. I'd love to say that I haven't updated because things are going well, but that just isn't true. This has been a hard fall for Bug, and honestly for myself as well. Bug has been struggling with migraines. We've been through several medications to treat the pain with little success. She is now on a daily preventative and (knock on wood) it seems to be helping. Anyway, PT at home is not anything close to the same as PT at the Dr. Friday, December 18, 2009.
Our Journey with Ehlers-Danlos Syndrome: April 2009
http://ehlersdanlos.blogspot.com/2009_04_01_archive.html
Our Journey with Ehlers-Danlos Syndrome. What is Wrong with People? Warning - this post is only complaining, ranting, and worse. If you don't want to hear it, wait for my follow-up with the good parts of the day. You know what I hate? Out there who treat her like she's a spoiled brat. Today, it happened again. And I'm freakin' livid. Darn, how sad for us). My daughter deserves to be treated like she knows what she is talking about until she proves otherwise, or, I say otherwise! No one in the area carrie...
Our Journey with Ehlers-Danlos Syndrome: January 2009
http://ehlersdanlos.blogspot.com/2009_01_01_archive.html
Our Journey with Ehlers-Danlos Syndrome. First of all, I want to say how happy I am that my online buddy Girl, Dislocated. Is back. I've missed her blog posts dearly! Next up, I suppose I owe a couple of updates on Bug. She had a wonderful Christmas full of family and love. Ok. Maybe she did get a bit spoiled. But you only live once, right? Her favorite gift this year was to the entire family, it was Rock Band 2 for Wii. I know I've posted before about how much I love the Wii. We're tried of the cold, bu...
Our Journey with Ehlers-Danlos Syndrome: Support an EDS Kid!
http://ehlersdanlos.blogspot.com/2009/08/support-eds-kid.html
Our Journey with Ehlers-Danlos Syndrome. Support an EDS Kid! One of Bugs EDS friends (in fact, her only EDS friend) is in a contest for a local auto dealership. She sang and is in the top 5. Now, she needs votes to stay in and hopefully win! Http:/ www.galesburg.info/davesidol.html. The website doesn't require you to register to vote, and it also doesn't say how often you can vote, only that the vote goes for 4 weeks with one child being eliminated each week. Thursday, August 13, 2009. Gumby / Mommy Zebra.
Our Journey with Ehlers-Danlos Syndrome: May 2009
http://ehlersdanlos.blogspot.com/2009_05_01_archive.html
Our Journey with Ehlers-Danlos Syndrome. Anyway, she says it all of a sudden stopped hurting. I suppose it's good we're almost done with school so we can work hard on Dragon Naturally Speaking this summer! Saturday, May 30, 2009. And the PT said. Anyway, we've had a great week since and are enjoying the holiday weekend. Only 8 days of school left, WOO-HOO! Sunday, May 24, 2009. Tuesday, May 19, 2009. Tonight has brought more ankle problems. Here is the letter I just finished e-mailing to the PT. I know i...
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The Queen's Adventures in....: September 2008
http://queenslug.blogspot.com/2008_09_01_archive.html
The Queen's Adventures in. Things running thru my brain. Well I guess that’s enough of my ramblings for today. Reality is merely an illusion, albeit a very persistent one. There are many ways to be free. One of them is to transcend reality by imagination, as I try to do. Just because it's beautiful. Pins and Needles Hand. Oh and on a wonderful note the potty training is going wonderfully! The most important post I may ever make. Being a EDS Mom. My daughter is 3, I can't carry her anymore. She's just...
The Queen's Adventures in....: October 2008
http://queenslug.blogspot.com/2008_10_01_archive.html
The Queen's Adventures in. Water PT Issues, Plus Some Random Bitching About Being Unwell. Getting disabled isn't for those with limited income. As a single mom my money needs to go to my daughter not me, but yet I wonder if it won't end up punishing her later on as I become more disabled due to putting myself second. PT, OT and Gym. We used the Nu-Step for a bit, but we had to stop because I swear I felt my right kneecap lift up a bit, kinda creepy. The PT tried to brace my kneecap and have it track ...
The Queen's Adventures in....: My head, my head, my head...
http://queenslug.blogspot.com/2009/04/my-head-my-head-my-head.html
The Queen's Adventures in. My head, my head, my head. I am so tired of these headaches! Anybody got any ideas? It sounds like Chiari or more likely CCI to me. Unfortunately, very few people have a clue about how to diagnose this. you would have to go to NY, Chicago, CO or (I think) LA to find a specialist. Let me know if you need more info, and I can send it to you. I'm pretty sure any idea I may have, you've already tried or thought of. Did you get the neck brace yet? Subscribe to: Post Comments (Atom).
The Queen's Adventures in....: Not much new
http://queenslug.blogspot.com/2009/03/not-much-new.html
The Queen's Adventures in. I'm still doing the arthitis pool class at the gym and it's going well. I can't seem to go below 600-300-600 for the gabapentin. Subscribe to: Post Comments (Atom). Little Town, Midwest, United States. Just your average 30-something mom with EDS and Polands Syndrome. View my complete profile. Our Journey with Ehlers-Danlos Syndrome. Yet another never updated blog. Harvester of Late Summer Light. Too Much Brain to Contain. My life with Migraine. Not medical at all.
The Queen's Adventures in....: March 2009
http://queenslug.blogspot.com/2009_03_01_archive.html
The Queen's Adventures in. I'm still doing the arthitis pool class at the gym and it's going well. I can't seem to go below 600-300-600 for the gabapentin. I'm still quiet because I don't have much to say, lol. I am still knitting and getting better. I've done a scarf, washcloth, a toy hat, some pins and am working on another scarf and going to try my hand at a sock soon. I think it's helping to keep my hand strength while I reduce the gabapentin. Subscribe to: Posts (Atom). View my complete profile.
The Queen's Adventures in....: Poland's Syndrome & Knitting
http://queenslug.blogspot.com/2009/05/polands-syndrome-knitting.html
The Queen's Adventures in. Poland's Syndrome and Knitting. I had mentioned a few months back that I've taken up knitting, the one upside I hadn't realized til recently is that this will be awesome for Poland's. Second up, Sleeves. After the above paragraph you should know what I'm talking about with sleeve. Every sweater I make will have the right length sleeves and the correct circumference as well. My right arm is a bit narrower as well as shorter. This is gonna be awesome! View my complete profile.
The Queen's Adventures in....: Social Security
http://queenslug.blogspot.com/2009/04/social-security.html
The Queen's Adventures in. Subscribe to: Post Comments (Atom). Little Town, Midwest, United States. Just your average 30-something mom with EDS and Polands Syndrome. View my complete profile. My head, my head, my head. Our Journey with Ehlers-Danlos Syndrome. Yet another never updated blog. Harvester of Late Summer Light. Too Much Brain to Contain. My life with Migraine. Not medical at all.
The Queen's Adventures in....: January 2009
http://queenslug.blogspot.com/2009_01_01_archive.html
The Queen's Adventures in. Subscribe to: Posts (Atom). Little Town, Midwest, United States. Just your average 30-something mom with EDS and Polands Syndrome. View my complete profile. Our Journey with Ehlers-Danlos Syndrome. Yet another never updated blog. Harvester of Late Summer Light. Too Much Brain to Contain. My life with Migraine. Not medical at all.
The Queen's Adventures in....: February 2009
http://queenslug.blogspot.com/2009_02_01_archive.html
The Queen's Adventures in. I don't know where the hell my mine has been, but I think I really needed the blog break. I had been popping in from time to time to read other peoples blogs, but I needed to step back a bit I guess. Anyhow, what's new with me? I'm got done w/PT for general joint crap and now may be heading back for my neck, stupid neck. I am trying to go to the water arthritis class at the gym, hope to do that 2x per week. I modify 90% of it, but the teacher is fine with that.
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日本エーラスダンロス症候群協会（友の会）
Japan Ehlers-danlos syndrome Fellowship Association. 情報は 命をつなぐ 手をつなぐ をスローガンに、. RDD 2018 in Tokyoのレポート. Rare Disease Day 2018 in さいたま 埼玉 のレポート. Rare Disease Day 2018 in さいたま 埼玉. JEFA地域交流会 第四回JEFA 関西の集い の報告.
Our Journey with Ehlers-Danlos Syndrome
Our Journey with Ehlers-Danlos Syndrome. I'd love to say that I haven't updated because things are going well, but that just isn't true. This has been a hard fall for Bug, and honestly for myself as well. Bug has been struggling with migraines. We've been through several medications to treat the pain with little success. She is now on a daily preventative and (knock on wood) it seems to be helping. Anyway, PT at home is not anything close to the same as PT at the Dr. Friday, December 18, 2009. Because it...
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Ehlers-Danlosforeningen · Foreningen for patienter med EDS
At få stillet diagnosen. Mere faglig viden og links. Bindeleddet 2017 – 1. Apr 13, 2017. TV2 program – De oversete sjældne. Mar 4, 2017. Ungdomsweekend 25. til 27. august 2017. Mar 3, 2017. Sjældne Diagnoser etablerer Helpline. TV2 program – De oversete sjældne. Et program, der giver et godt indblik af, de komplekse udfordringer man kan stå med som både politiker, patientforening, læger, patient og pårørende. Nanna brugte illegal cannabis-olie: Det var møgubehageligt. Bindeleddet 2017 – 1. On March 15, 2...
Homepage - EhlersDanlos.it
EhersDanlos.it il sito italiano dedicato alla sindrome di Ehlers Danlos. La sindrome di Ehlers Danlos. Test sullo stato di handicap. Benvenuti su: ehlersdanlos.it, il sito italiano dedicato alla sindrome di Ehlers Danlos e punto di incontro per chi è affetto da questa sindrome. In queste pagine potrete trovare e scambiare informazioni, con altre persone che, come noi, convivono ogni giorno con questa sindrome rara. Il vostro contributo alla crescita di questo sito è molto importante: registrandovi. E' st...
Ehlers Danlos Syndrome
Ehlers Danlos Teen Support Group. Thursday, June 20th, 2013. Need advise have surgery scheduled in the am these are my two options surgery tomorrow at 10 am. The time in hospital is usually one night's stay. Sunday, April 21st, 2013. I was just in the emergency room for chronic chest pain. Its been a long journey so far and it's going to continue to be an uphill battle! Monday, February 4th, 2013. Any advise on who to see for a diagnosis I am in Lancashire. Hope you all well. Thursday, April 19th, 2012.
