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

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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.

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.

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.

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How We Love Hanging Out With Our Friends

Did I ever mention I have a lake in my back yard? 

Well, this is the view from up at our house. It is hard to tell there is a lake back there.

Taking the path that runs along the side of our property reveals the lake close up.

This perfect fishing spot even has room for tents back behind the shot!

If you look really close, you can see the neighbor's boats in the distance.

I love camping, fishing, and all outdoor activities!

But I don't do them.

While everyone is enjoying outdoors on Memorial Day Weekend, I remain indoors creating this blog and grieving for those I have lost and military members who died for our freedom. If you are wondering why on earth I stay cooped up, please let me explain. I have Ehlers Danlos Syndrome in addition to a two and a nine-year-old child. Check out the view from the lake going back home...

That's a steep path!

No matter if we weed-eat it is still a steep road, but there is an end.

Going to the lake and back one time takes away my spoons for about half a day! Imagine what I would be like if I went back up because I forgot something! (I tried it, so I already know.)

If the spoon mention confuses you, please refer to the spoon theory written here.

This photo helps me illustrate.

If I didn't have Ehlers-Danlos Syndrome, I would be making out invitations before every holiday and inviting friends and family down to fish at the lake, have dinner, and enjoy each other's company. 

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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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Don't Cry Over Spilled milk!

Don't Cry Over Spilled Milk?

You guessed it! I just bought a gallon of whole milk for my youngest and my wrist gave out and lost it all over the kitchen floor! It looked like a flood. It is not as if it has never happened before. Over the years I have lost countless gallons of milk but today it really got to me. Sometimes my wrist will give out and other times I think I have it on the counter when it was too close to the edge. I had tears.

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

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?