I have decided that with my Optic Nerve Hypoplasia and Ehlers Danlos Syndrome both being considered rare conditions which require an MRI to check for abnormalities including the mid-line brain and chairi malformation that I would need to start a fundraiser. Im really not sure where to post my fundraiser besides on my blog and I don't know that anyone reads it. Hopefully one day I will get an upright MRI in Carmel then have a better quality of life.
Give Forward <--- Would love some support! Like? Share? hug?
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. Since beginning this blog I have created another in hopes of bringing awareness to Ehlers Danlos Syndrome. This site continues to be my personal blog while I am helping others share fundraisers on the other. They all need help. From Legacy to wheelchairs, there are plenty of stories of people who need help. My supporters give me hope.
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.
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 2, 2015
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