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

Saturday, October 8, 2016

Surgery VATS with pleurodesis

Facebook

I have not been posting because I have been pushing my limits while having Ehlers Danlos Syndrome. I got steroid shots injected into my lower lumbar region and, unlike most people, it actually worked for me. I then pursued a full time job. For the past year I have been working to build surgical parts. It has been fullfilling work to know that I have been able to assist doctors in improving the quality of life for people around the world. I am now unemployed. Reoccurances of primary spontaneous pneumothorax took that from me and family. I saw my 3 year old dislocate and relocate his thumb yesterday. That was the first time I have ever seen anyone besides myself go through it in person. In this post, I'd like to add a call to action. This page is old and never really received much love to begin with. Please click contact us on the page linked above to visit the website and see if anyone's gofumdme is still working to help them. That is my goal this weekend in addition to school work and healing from VATS with pleurodesis.

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Sunday, July 3, 2016

Spontaneous Pneumothorax

I send my most sincere apologies to my followers that I have taken so long to blog update. It has been a long road. I started working while so far behind on bills. This was after steroids in lower lumbar region. I began working October of 2015 and have been pushing hard. When I feel like giving up I go into denial of my EDS and promise myself it would hurt this bad at home too. In mid-April, I had another primary spontaneous pneumothorax. This is a highly rare thing to happen to people. It happened to me for the second time in three years. I was put on medical leave until mid-May when I could get my pulmonologist to release me. I withdraw posting about my feelings thinking my children may read this one day. My love goes out to all fighting today!!


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