all851
 |
| Rank | Member |
| Online Status | OFFLINE |
| Member Since | 03/21/2009 08:02 PM |
| Last Online | 10/22/2012 09:27 PM |
| Gender: | Female |
| State: | Alabama |
| A little about me: | Hi my name is Amber.(Update: Dad died Oct 1st, 2009 at 46) My Dad, Jim, has three types of Ehlers-Danlos Syndrome: the joint hyper mobility, skin, and vascular types. He is only 46 and has been on and off hospice a few times. He's on an ungodly amount of morphine. He's bed ridden and now has a horrible infection that can't be cured. The doctors want to amputate his legs but fear his heart and skin won't be able to take it. My Dad's right lung collapsed when he was 19. He was in his late 30's before he was diagnosed with EDS and that's because he was having heart problems. My Dad went through several doctors over the years that told him he was crazy and a drug seeker. Thankfully he was able to get to Emory hospital in 2000 and they found the EDS. This disease is horrible. On my 20th Birthday I talked to the people at Emory but I wasn't tested because I didn't show any major symptoms of EDS. I also spoke to a genetics counselor when I was pregnant over 3 years ago but we only talked......no testing. Now I'm starting to have a lot of health problems and I wonder if I have EDS. I pray the doctors will listen to my concerns. I also fear for my lil boy and any future children I may have. My son bruises easily just like I did as a child.... |
My Awareness Ribbons
|
|
"My Dad has Ehlers-Danlos Syndrome and I may have it as well. My Dad is permanently disabled. And I suffer from headaches almost daily." |
| Awareness Ribbons | |
| Add as Friend |
| Private Message |
| Give a Hug |
My Hugs
 | Hey everybody.. just passing by to wish you a lovely and OCD free day... remember one day at a time.. it takes small stepts to reach your goal :) .. good luck, hugs! |
| Namaste! I apologize for not being on the boards lately. There is a lot going on in my life right now and I am dealing with the changes. I hope you are doing ok. Always remember that you have the strength and you have the power. OCD may be frightening at times but it is we who have control over it and not the other way around. I will be back on the boards soon...maybe in a few weeks. until then I wish you all the best! Namaste! Nick |
| Namaste! The new year is upon us and I would like to wish you a very peaceful new year! Namaste! Nick |
Give all851...
My Diary
Amber's Journey
Well, my Dad used to be the "poetry man" and I also have his love of words and emotion. I love the arts.....I am a musician (flute, piano, and guitar), I sing, I write, I draw and make things, I crochet and scrapbook, I am an actress with community theater, I dance (mainly clogging but some jazz, ballet, and tap.......also interpretive movement and flags).......I also enjoy teaching and preaching God's word. My Dad was a minster. I like reaching out to youth groups.....my main message to the youth is about purity and abstinence and that is my own testimony with my husband. I am most importantly a committed follower of Jesus Christ. I am pro-life and Pro-Israel. I dream of visiting the holy land someday. I enjoy celebrating the Biblical feasts (passover, feast of tabernacles etc etc). I love to travel but have yet to leave the US. I am planning on a long road trip to Canada next summer. I want to show my lil boy the world and give him every opportunity to do whatever he wants.........whether it is acting or sports etc.....I want him to live a full life.....even if we both end up with Ehlers-Danlos SYndrome like my Dad. Oh I love animals and would have a zoo if I had the energy to care for them. I also started gardening recently. And planting vegetables sure hurts the back lol. Maybe I've chosen all the wrong hobbies but I have a hard time staying home........unless I'm on Second Life and I explore the virtual world. I am a big gamer........I especially love Nancy Drew mystery games......I would be a detective if it was realistic ;)
Oh did I mention I love music? Every type that is clean (no bad words or explicit stuff). I can go opera and classical...to hard rock and rap. I mainly listen to Christian music in most types but there are some that aren't.....like oldies and country. I love to eat everything but thankfully have a high metabolism so I don't gain anything. I don't like traditional exercise or taking vitamins but think I should start.... Mainly I enjoy spending time with my son (three and a half) and my Husband....... My Mother lives with me also. My Dad moved into a nursing home near me about 7 or 8 months ago. He died October 1st, 2009 of three things, Pneumonia, lung weakness, and Ehlers-Danlos Syndrome. I was with him almost every day...at least every other day for those many months. His death has been very hard on me. Also my hubby deploys a lot (he's military but will get out after this next deployment) so I don't like being alone for long periods of time. I've already been through two deployments and the last one I taught my son to walk and talk.....my hubby missed Michael's 1st and 2nd birthday. I felt like a single Mom for awhile. But things are looking up in that area :) I love Life........there is so much more I could say but this is too wordy. I told you I love words and emotions lol! :) As much as I type I also love to listen or umm read lol.....so please feel free to lean on my shoulders. Blessings to all and I know we will all come out ok in this journey......like Sam tells Frodo in The Lord of The Rings...
"Sam: I know. It's all wrong. By rights we shouldn't even be here. But we are. It's like in the great stories, Mr. Frodo. The ones that really mattered. Full of darkness and danger, they were. And sometimes you didn't want to know the end. Because how could the end be happy? How could the world go back to the way it was when so much bad had happened? But in the end, it's only a passing thing, this shadow. Even darkness must pass. A new day will come. And when the sun shines it will shine out the clearer. Those were the stories that stayed with you. That meant something, even if you were too small to understand why. But I think, Mr. Frodo, I do understand. I know now. Folk in those stories had lots of chances of turning back, only they didn't. They kept going. Because they were holding on to something.
Frodo: What are we holding onto, Sam?
Sam: That there's some good in this world, Mr. Frodo... and it's worth fighting for." The Lord of the Rings: The two towers :P
Well, my Dad used to be the "poetry man" and I also have his love of words and emotion. I love the arts.....I am a musician (flute, piano, and guitar), I sing, I write, I draw and make things, I crochet and scrapbook, I am an actress with community theater, I dance (mainly clogging but some jazz, ballet, and tap.......also interpretive movement and flags).......I also enjoy teaching and preaching God's word. My Dad was a minster. I like reaching out to youth groups.....my main message to the youth is about purity and abstinence and that is my own testimony with my husband. I am most importantly a committed follower of Jesus Christ. I am pro-life and Pro-Israel. I dream of visiting the holy land someday. I enjoy celebrating the Biblical feasts (passover, feast of tabernacles etc etc). I love to travel but have yet to leave the US. I am planning on a long road trip to Canada next summer. I want to show my lil boy the world and give him every opportunity to do whatever he wants.........whether it is acting or sports etc.....I want him to live a full life.....even if we both end up with Ehlers-Danlos SYndrome like my Dad. Oh I love animals and would have a zoo if I had the energy to care for them. I also started gardening recently. And planting vegetables sure hurts the back lol. Maybe I've chosen all the wrong hobbies but I have a hard time staying home........unless I'm on Second Life and I explore the virtual world. I am a big gamer........I especially love Nancy Drew mystery games......I would be a detective if it was realistic ;)
Oh did I mention I love music? Every type that is clean (no bad words or explicit stuff). I can go opera and classical...to hard rock and rap. I mainly listen to Christian music in most types but there are some that aren't.....like oldies and country. I love to eat everything but thankfully have a high metabolism so I don't gain anything. I don't like traditional exercise or taking vitamins but think I should start.... Mainly I enjoy spending time with my son (three and a half) and my Husband....... My Mother lives with me also. My Dad moved into a nursing home near me about 7 or 8 months ago. He died October 1st, 2009 of three things, Pneumonia, lung weakness, and Ehlers-Danlos Syndrome. I was with him almost every day...at least every other day for those many months. His death has been very hard on me. Also my hubby deploys a lot (he's military but will get out after this next deployment) so I don't like being alone for long periods of time. I've already been through two deployments and the last one I taught my son to walk and talk.....my hubby missed Michael's 1st and 2nd birthday. I felt like a single Mom for awhile. But things are looking up in that area :) I love Life........there is so much more I could say but this is too wordy. I told you I love words and emotions lol! :) As much as I type I also love to listen or umm read lol.....so please feel free to lean on my shoulders. Blessings to all and I know we will all come out ok in this journey......like Sam tells Frodo in The Lord of The Rings...
"Sam: I know. It's all wrong. By rights we shouldn't even be here. But we are. It's like in the great stories, Mr. Frodo. The ones that really mattered. Full of darkness and danger, they were. And sometimes you didn't want to know the end. Because how could the end be happy? How could the world go back to the way it was when so much bad had happened? But in the end, it's only a passing thing, this shadow. Even darkness must pass. A new day will come. And when the sun shines it will shine out the clearer. Those were the stories that stayed with you. That meant something, even if you were too small to understand why. But I think, Mr. Frodo, I do understand. I know now. Folk in those stories had lots of chances of turning back, only they didn't. They kept going. Because they were holding on to something.
Frodo: What are we holding onto, Sam?
Sam: That there's some good in this world, Mr. Frodo... and it's worth fighting for." The Lord of the Rings: The two towers :P
| Title | Date | Views | Comments |
| From Sorrow to Peace~You can get there | 01/18/2012 | 222 | 0 |
| Silly nerves...tricks are for kids | 08/11/2010 | 146 | 2 |
| My skin and body hates me I think..... | 05/07/2010 | 90 | 0 |
| Laparoscopy | 11/17/2009 | 133 | 0 |
| Daddy Dances with Jesus | 10/20/2009 | 143 | 1 |
| EDS memorial video | 04/04/2009 | 147 | 0 |
| Advocate for EDS | 04/03/2009 | 105 | 0 |
| Wore slap out....... | 03/29/2009 | 227 | 0 |
| Daddy Made it!!!!!!!!!!!!! :) :) | 03/27/2009 | 83 | 0 |
| Tomorrow.... | 03/25/2009 | 109 | 0 |
My Health Topics Contributions
No health topics contributed yet
My Photos
My Support Groups
My Friends
My Recent Posts
| EDS and Menstrual problems? | 06/01/2011 | ||
| My Dad has 3 types of EDS and ... | 08/11/2010 | ||
| My Dad has 3 types of EDS and ... | 06/23/2010 | ||
| EDNF conference in July? | 06/01/2010 | ||
| My Dad has 3 types of EDS and ... | 05/28/2010 | ||
| dermatillomania | 05/08/2010 | ||
| 25 with secondary infertility/... | 05/08/2010 | ||
| EDNF conference in July? | 05/07/2010 | ||
| hello | 05/07/2010 | ||
| relating to doctors | 05/07/2010 | ||
| Starting a family | 05/07/2010 | ||
| EDS and Menstrual problems? | 05/07/2010 | ||
| bed sores and weird skin flaki... | 05/07/2010 | ||
| EDS and Menstrual problems? | 01/29/2010 | ||
| anyone suffer with Raynaud's | 04/05/2009 | ||
My Articles
No articles published