About Me

Hello! Thank you for viewing my blogs. I am a mother of two born in the early 80s. My boys were born 5/19/2006 and 5/5/2013. I was diagnosed with Ehlers-Danlos Syndrome Classical in August 2013 after going to a rheumatologist suspected of having an autoimmune problem both by symptoms and blood work. I left the office with an Ehlers-Danlos Syndrome diagnosis. I frequent many Facebook groups including Ehlers-Danlos support sites. I have other diagnostics which will I will list in the archives of my site. I live in the forest area of Indiana. I grew up all over the state of Indiana. My other family shows no signs of hypermobility except for my father who sat in a yoga position with both feet up in his lap. He complained of hand and wrist pains when it came to writing. I am the first and only in my family with this diagnosis. You do not have to be hypermobile to have Ehlers Danlos Syndrome. You do have to be in pain.


During this journey of life with a chronic illness, I hope to pick up friends to exchange support and encouragement.


I remember the appointment very well. The office staff gave me this long word that I had to have them write on a piece of paper for me. I went home and began to research "Ehlers-Danlos Syndrome." I never expected what I found to fit me so incredibly well. I have joined many support groups. Within the support groups, I have learned that there are many more common issues that we have though they are not on the lists available to describe us. One example is that I have yet to find somebody with Ehlers-Danlos Syndrome that does not see halos around lights in the night. As time goes on, I am learning exactly how debilitating this condition is. Although the pain remains the same, the stiffness and lack of ability increases.



If you need to contact me and are not a spammer, you may also write an email to my lowercase yahoo address. See combination below:




The email is my first name. amanda

The first letter of my last name. hudson

The number 14

@yahoo.com

Thursday, April 16, 2015

I need a geneticist!!

I know Doctor Google can be very harmful for us and it is best to stay away from researching too much but I came across this article and it fit me so well that I can't help but wonder if I have type IV Ehlers Danlos Syndrome personally instead. My factor VIII was found to be low and borderline Von WIllebrand Disease was diagnosed. I have been having problems with pneumothorax as well. I am very nervous that my fundraiser wont take off and that I wouldn't be able to afford my child daycare and travel expenses to get myself properly checked out. I know I need to place my faith in the universe and believe that God has a plan no matter if I am comfortable with it or not. I could really use prayers today.



Check out the article that ruffled my feathers today here.

A special shout out and thank you to my supporters! You mean so much! You give me HOPE!
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