Racing Days and Kibble Nights

I would love to know what place I got for the marathon I must have ran in my sleep last night. I had a relentless pulled muscle in my inner left thigh that gave me an embarrassing limp at work today. My whole body ached all over. I mean I hurt before I went to bed but isn't sleep supposed to help and not hurt? Not happening with EDS.

My home life didn't get any better when I went to feed the dogs. I filled the puppy feeder and walking back to put it in its place it spilled everywhere. I guess my left wrist couldn't handle the pressure of my right hand putting the lid on it because it gave out on me. Please comment and give me reassurance that a two year old can handle a little kibble in their diet. :(

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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

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!

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.

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"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

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

The Doctor Turned Me Away

My doctor tells me that I have both a bleeding disorder and a clotting disorder. I am so confused! Apparently, so is he. It's like taking a Toyota to a Ford clinic to be worked on he said.

Due to the lack of experience with my condition by doctors in my area, I am waiting on details of where I will be sent. I was diagnosed with a bleeding disorder and a clotting disorder. I will be sent out of state in search of a care team. Ohio Children's Hospital or Mayo is looking likely pending resources for overnight stay, travel expenses, daycare for children at home while I am away, and any possible insurance involvement in my needs for specialty care. We remain hopeful I will get treatment of any kind soon. The upright MRI in Carmel would be so helpful in determining treatment. Your support means so much!!!

                                     Trying to remain strong for my babies everyday.

Fundraiser

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?

Genetics Ehlers Danlos Syndrome and Me

All of the laboratory testing for 23andMe is done in a CLIA-certified, CAP-accredited laboratory in the United States.

I had my DNA ran by 23andme.com using saliva testing. I took the results and ran them through livewello. These are my results based on genes presumed to be linked to Ehlers Danlos Syndrome (note: SNPs are all collectively found on my chip for each gene. There are more but they aren't showing on my chip at this time.)

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My diagnosis is classical familial hypermobility type of Ehlers Danlos Syndrome by my rheumatologist. I have not seen a geneticist. I do not have insurance to go see one or seek treatment at this time. Thanks for reading! Please subscribe and share!