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

Showing posts with label Thank You. Show all posts
Showing posts with label Thank You. Show all posts

Sunday, May 31, 2015

Quick Update on Fundraiser

It was brought to my attention that  people who want to donate are uncomfortable using gofundme and prefer paypal transactions instead. After learning this I have added a paypal button to my blog here. I am still in need of funding for my upright mri in Carmel as well as to keep up on fuel for the numerous appointments I try to keep during this journey. I have the desire to take my family to Heidi Collins in South Bend, Indiana and such funding may just make that possible. If you are unable to donate that's ok! Just having your support means the world to me.

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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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Wednesday, April 15, 2015

Insurance Troubles

We all have them from time to time. You know, those pesky insurance problems. I wasn't able to attend my appointment in Carmel. Now I wait. Last night I made this video for EDSFC instead after being called in the morning by my PCP office to cancel my trip. Take a look:



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Monday, April 13, 2015

My Medical Journey Update

The goal was to get me into see a care team but we learned that Cincinnati Children's Hospital is booked until January. I am being sent to a round of different specialist doctors in the meantime. I will be taking the trip to Carmel, Indiana tomorrow and look forward to updating my supporters as I receive information. I also have an appointment with Methodist Hospital in Indianapolis, Indiana Scheduled for the afternoon of May 12th to address my clotting disorder. I have been to three different hematologists in regard to my opposing bleeding disorder. I will be seeing a vascular surgeon for this evaluation. 


I can't thank my supporters enough for being here for me during this journey! I am blessed and they give me hope!
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Friday, April 10, 2015

Our Family Has Been Blessed!

I can't thank you enough for your support!! I have an appointment that is two hours from my home and I now have the gas to go. We are very grateful.I couldn't have done it without your help. It just wasn't able to be added to the budget to afford this trip. God answers prayers! Thank you!


Fundraiser
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