Ehlers Danlos Syndrome Family Contributions: Donate to what? Can you spell that?

Ehlers Danlos Syndrome Family Contributions: Donate to what? Can you spell that?: Have you donated to cancer research? That is an excellent way to support chronic illness! Please read through this post: One rainy Satur...

Fun Times Loving Life!

I wanted to talk about some fun times in my life as my blogs are very informative and true but fail to show how wonderful my life is and how thankful I am to be here. Tonight we are having spaghetti for dinner. But that doesn't sound very impressive to write about at all. The exciting part you ask?

Morel Mushrooms

Morchella, the true morels, is a genus of edible mushrooms closely related to anatomically simpler cup fungi. These distinctive mushrooms appear honeycomb-like in that the upper portion is composed of a network of ridges with pits between them. The ascocarps are prized by gourmet cooks, particularly for French cuisine. Commercial value aside, morels are hunted by thousands of people every year simply for their taste and the joy of the hunt.

Morels have been called by many local names; some of the more colorful include dryland fish, because when sliced lengthwise then breaded and fried, their outline resembles the shape of a fish; hickory chickens, as they are known in many parts of Kentucky; and merkels or miracles, based on a story of how a mountain family was saved from starvation by eating morels. In parts of West Virginia, they are known as molly moochers. Due to the partial structural and textural similarity to some species of the Porifera sponges, a common name for any true morel is sponge mushroom. Genus Morchella is derived from morchel, an old German word for mushroom, while morel itself is derived from the Latin maurusmeaning brown. Read more...

Our batch of Morel Mushrooms 2015!

My other half went out and found all but the three I located to prove they popped!

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Glaucoma Time!

I was diagnosed with preglaucoma which has now, "crossed the border" as my doctor says. My doctor has earned an OD after her name. She is known for traveling to Guatemala for purposes of caring for glaucoma patients over seas. My eye doctor has been monitoring my glaucoma for years now. My optic nerves have always been white. I found out I didn't do so well on visual fields twice in a row. She decided to put me on drops if my pressures were not down in the teens. I had an eye caught at a pressure of 19 before and another time 23. I had hope that they would be in the teens this time. They were both 21. She put me on Timolol to hopefully slow progress of further vision loss. Again, I am 32 years old.

Ehlers Danlos Syndrome and Glaucoma. 

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My Wife Had EDS and Did Not Know it! - Ehlers-Danlos Syndrome (EDS) community - RareConnect

My Wife Had EDS and Did Not Know it! - Ehlers-Danlos Syndrome (EDS) community - RareConnect

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!

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:

Ehlers Danlos Syndrome The Story of Pain