Life with Ehlers Danlos Syndrome

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.

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 Support. Show all posts

Saturday, June 6, 2015

Ehlers Danlos Syndrome Family Contributions: Did you guys see American Ninja Warrior? Michael S...

Redirect to EDSFC for latest news and insights:

Ehlers Danlos Syndrome Family Contributions: Did you guys see American Ninja Warrior? Michael S...: Did you guys see American Ninja Warrior? Michael Stranger's wife said she has Ehlers Danlos Syndrome and that for her it is a terminal i...

Redirect to find out what is being talked about in the Ehlers Danlos Support Groups this June of 2015 and learn what you can do do about it! Click the link above.

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.

Tuesday, May 26, 2015

Pain Meds and Me

Pain Medication and Me

I can't decide if I like or hate the pain medication. It seems like we have a love hate relationship going on. I love that I can clean my house and do way more than normal on an average day. There is a lot to catch up on over the many days I was unable. That feeling is overwhelming but knowing I have medication for the days coming gives me hope that I can get caught up and in a decent time frame.

On the other hand, my head feels fuzzy. I feel like I have more irritability and less patience as if that wasn't a problem to begin with! It was. I don't like the idea that I have to pop a pill just to measure up to the ability of the average person. I don't like feeling like my head is fuzzy. I don't like how my body continues to drag as if I am exhausted from the pain I usually feel but am not feeling so much now.

If you are wondering if I am addicted then know that I am not. I have only been on pain meds for 10 days now. I was on them for about 10 years and it was just like this before too. I was on them with xanax too though which not only helped me with my regular anxiety problems but also reduced the increased irritability and loss of patience I am dealing with now. If you are wondering if I am dependent then know that I am. I depend on them to have the abilities of an average person. The pain I deal with everyday is lessoned to the point that I can push through and look like everyone else trying to do so. I will still have my sudden pulled muscle, subluxation, or sprain but not the chronic daily pain keeping me from enjoying life and getting stuff done.

For so many examples we can not just have our cake and eat to too. I am open to any suggestions on this. For now I will remain thankful that I have any treatment and hopeful that I can set new goals and reach them such as gaining new employment with higher pay and more hours.

It is now taking me more time to write my blogs as my semester ended and my college took back the Dragon Naturally Speaking software so I no longer have talk to text. They even do a remote uninstall to make sure it is returned, It will cost me $99 to buy my own personal copy of the software.

As always please subscribe and share!

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!

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:

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!

Saturday, April 11, 2015

Ehlers Danlos Family Contributions

It is time.

One blog featuring families in need who have Ehlers Danlos Syndrome has been created. The mission of the blog is to provide one stop to find a way to donate to the various nonprofit centers for research to find a cure as well as individual families who need help.

Blog Preview:

"1. Lack of information from doctors world wide. People with Ehlers Danlos Syndrome usually travel many miles to seek treatment due to scarce familiarity with the condition.

2. Systemic problems occur. Very few people or none with Ehlers Danlos Syndrome have no other medical problems diagnosed. The other diagnosis' are often but not always secondary diagnosis to the Ehlers Danlos Syndrome.

3. Often people with Ehlers Danlos Syndrome are minimized. They are told the problems, being so many, are all in their head. Many have been diagnosed with psychiatric disorders that do not fit them.

4. People with the Vascular type of Ehlers Danlos Syndrome have a lower life expectancy. People with any type are at risk for life threatening complications."

The hope is that for every $20.00 donated to the cure research that $1.00 is donated to one of the families currently struggling with this debilitating systemic congenital condition to aid them to a better quality of life. Such families are found along the right side of the blog.

This community really needs your help!

Click here to view: EDSFC

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