Surgery VATS with pleurodesis

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I have not been posting because I have been pushing my limits while having Ehlers Danlos Syndrome. I got steroid shots injected into my lower lumbar region and, unlike most people, it actually worked for me. I then pursued a full time job. For the past year I have been working to build surgical parts. It has been fullfilling work to know that I have been able to assist doctors in improving the quality of life for people around the world. I am now unemployed. Reoccurances of primary spontaneous pneumothorax took that from me and family. I saw my 3 year old dislocate and relocate his thumb yesterday. That was the first time I have ever seen anyone besides myself go through it in person. In this post, I'd like to add a call to action. This page is old and never really received much love to begin with. Please click contact us on the page linked above to visit the website and see if anyone's gofumdme is still working to help them. That is my goal this weekend in addition to school work and healing from VATS with pleurodesis.

Spontaneous Pneumothorax

I send my most sincere apologies to my followers that I have taken so long to blog update. It has been a long road. I started working while so far behind on bills. This was after steroids in lower lumbar region. I began working October of 2015 and have been pushing hard. When I feel like giving up I go into denial of my EDS and promise myself it would hurt this bad at home too. In mid-April, I had another primary spontaneous pneumothorax. This is a highly rare thing to happen to people. It happened to me for the second time in three years. I was put on medical leave until mid-May when I could get my pulmonologist to release me. I withdraw posting about my feelings thinking my children may read this one day. My love goes out to all fighting today!!

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.

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

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?

More than the Beighton Scale/Score

Other signs of connective tissue disorder and hypermobility include the following:

Metenier's sign

Reverse-Namaskar

There are many more signs. EDSers will do this stuff as kids as "party tricks" and yes we realize nobody else seems to 

be able to do it but we dont necessarily see ourselves as different. Gym class shows many people doing things that 

others can not for instance. We were born this way and have to be told that it is different within the population norms.

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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3

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!

Cervical Instability

Hello everyone! I hope you are enjoying the blog. All I could think about lately was the pain that goes on everyday but Im not going to get on here everyday and whine about that causing my blogs not to want to be read anymore. Instead I slap on a smile (call me fake idc) and continue onward.

Today I want to talk briefly about cervical instability. Many with EDS complain about neck and back pain daily. It can get really bad too. I would love to put my head down about every hour for a good 15 minutes all day long. Of course I cant do that but when I get the chance it does help me get through the day. You will find me trying to hold my head up with my wrists very often. Yes it does make things worse for the wrists!! Today I am thankful of my pain scale not being a 10. Woohoo! Tomorrow is Halloween and I plan to take my kids out so I imagine I will be worthless November 1st hahaha! (I laugh but it's not funny. Not really) But that's ok I will pretend I am fine and try to get myself to believe it. Its hard to understand how that does seem to help, although very little, it does. A positive attitude will get me as far as I can go in life. I choose to stay positive for myself and my family! So slap that smile on and fake a good day if you have to. If I believe there will be more Ehlers Danlos Syndrome awareness in our future than it will come true? The power of attraction wins!!