Real Life Story #5- Rikard’s Life With Marfan Syndrome

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Rikard’s Life With Marfan Syndrome

My name is Rikard and I have Marfans Syndrome.  Despite that, I consider myself quite fortunate in my situation.  I am 24 years old.  I study to become a lawyer and go to regular doctor check-ups, both of which are free.  (I’m a Swede living in Sweden.)  I exercise several times a week, maintain a healthy diet and generally manage the complications from my diagnosis.  If all else fails, I have friends and family who look out for me and know about the symptoms of my disease and side-effects of my medication.  All in all, I suppose I am quite lucky.  Unfortunately my father wasn’t.Continue Reading the full Article…



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Get the Word Out Wednesday Link Up #7

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Get the Word Out Wednesday

Thank you for stopping by and please be sure to tell everyone you know (bloggers and readers) about the opportunity to spread the word.

It is has been another fun filled week here at The Zippy Zebra Household.  I have been reaching out to more chronic illness communities in hopes to “Get the Word Out” asking them to share their “Real Life Stories” for our Tuesday and Thursday series.  If you are interested in sharing your story please do so by emailing it to [email protected] or click here for more details on what we are looking for.

If you or someone you know is an author, blogger, video person or has a story to share please send them our email and ask them to share with us. [email protected]

I also began a “Closed” facebook group for encouraging those of us who find it difficult to do the everyday things in life (dishes, getting out of bed, laundry, dinner), etc… Check the details out at  “Celebrating Each Day, Each Project, Each Accomplishment at a time.”   You can request to join here.   It is to offer encouragement to each other as we make plans for the day and try to complete them.

We will be hosting a “Get the Word Out Wednesday” Link-up EVERY  Wednesday for blogs featuring articles that will help those with a chronic illness.Continue Reading the full Article…



Real Life Stories #4-Awaiting Diagnosis Marfan Syndrome

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Awaiting Diagnosis

Real Life Story #4 Rachel's Marfan Journey

Hi!  My name is Rachel.

I am 14 and a freshman in high school.

I enjoy designing clothes, reading books, hanging out with friends and watching movies.  I like creating stories and drawing.

I have been diagnosed with severe scoliosis, flat feet, severe vision issues, Ehlers Danlos Syndrome Type 3, Postural Orthostatic Tachycardia Syndrome and Mast Cell Activation Syndrome.

I am currently awaiting gene testing results for Marfan Syndrome.Continue Reading the full Article…



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The Story of Me (In verse).

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For further details on her illnesses, simply click on the highlighted words.

THE STORY OF ME

Rachel Poem

My name is Rachel.

   This is the story of me.

My body is full of surprises, as you will soon see.

I have strange joints, not just elbows and knees

 but ALL of my joints are really bendy.

Continue Reading the full Article…



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Real Life Stories #3-Marfan Journey

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Jennifer’s Journey

Jennifer Cross Photo

My Name is Jennifer Cross

I was born in Springfield Illinois on October 1st 1972 ( I accept birthday gifts all year =) )

I am the middle monster of 3 kids.  My brother Jeff is 47 (Marfan’s and valve replacement at 32 like my dad and ticks) and my sister Jeanine is 41 has Marfan’s and no surgeries (we are polish twins ) Most of my childhood was spent outdoors…even more when we moved to Clearwater, Florida in 1980 following my father’s valve replacement at the age of 32.  My dad was 6’4 handsome, fun, and always loved being outside so moving to Florida was ideal since shoveling snow was not a great idea for him.

I remember sitting at the dinner table, hearing a “tick” on some nights and on others nothing.  That was the sound my dad’s heart made after his surgery.  My family didn’t discuss such things as health etc.. so I just thought it made my dad even more special .

At that time little was known about what my dad had.. Marfan’s Syndrome.

I never gave it any thought..

Then I became a teenager..Continue Reading the full Article…



Get the Word Out Wednesday #6-2015

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Get the Word Out Wednesday

Thank you for stopping by and please be sure to tell everyone you know (bloggers and readers) about the opportunity to spread the word.

It is has been another fun filled week here at The Zippy Zebra Household.  I have been reaching out to more chronic illness communities in hopes to “Get the Word Out” asking them to share their “Real Life Stories” for our Tuesday and Thursday series.  If you are interested in sharing your story please do so by emailing it to [email protected] or click here for more details on what we are looking for.

I have been speaking to some great women in the EDS community including a paranormal author Rebecca Howard-Patrick whose current series contains a protagonist with EDS. Her first book is available on Amazon at a discount right now Windwood FarmMysti Guymon-Reutlinger author of Journey to Health: A Holistic Approach to Ehlers Danlos Syndrome.  And a model, still working despite her EDS complications.  All have agreed to share their stories in our “Real Life Story” series and I can’t wait to begin sharing.  I am not certain when these will be posted due to time constraints and deadlines everyone has but I have been promised they will share.  I want to be honest and share in advance I have not had to opportunity to read either of the books above as I just discovered them recently BUT I have ordered both and can’t wait to begin the next time I have a little room to breathe.

If you or someone you know is an author, blogger, video person or has a story to share please send them our email and ask them to share with us. [email protected]

I also began a “Closed” facebook group for encouraging those of us who find it difficult to do the everyday things in life (dishes, getting out of bed, laundry, dinner), etc… Check the details out at  “Celebrating Each Day, Each Project, Each Accomplishment at a time.”   You can request to join here.   It is to offer encouragement to each other as we make plans for the day and try to complete them.

We will be hosting a “Get the Word Out Wednesday” Link-up EVERY  Wednesday for blogs featuring articles that will help those with a chronic illness.Continue Reading the full Article…



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Easy Dishwasher Tab Storage

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DIshwasher Pac Storage

Store your dishwasher pacs on your counter in an accessible waterproof container.

This saves you the hassle and pain of bending and stretching to grab them from under the sink.

For more dishwasher ideas:

Click here.

For more kitchen Ideas:

Click here.

This may seem like a simple idea but if you were raised anything like I was… you didn’t keep things like this on the counter.

That may be so but in my life with chronic back pain this one little trick has saved me tons of additional pain.

Maybe it will help you too.



Real Life Story – Marfans Journey #2

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My name is James Beal.  I was born in north Carolina in 1980.  I lived a normal childhood with little fear.

At night when I would go to bed I would always have the same strange dream.  I would dream I was sitting on the stairs looking out the window.  The Easter bunny would run by the window like someone was chasing him.  Then the devil would run by.  A few minutes later the devil would peek in the window,  hold up the rabbit ear and point at me.  At that moment I would wake up with severe chest pain unable to speak.  The doctors always said it was a heart murmur.

At 15 I was falling asleep in class, having severe chest pains, and unable to focus on anything.  I went to the Dr., but was told it was growing pains.  While running track one day, I had a heart attack and hit the ground.Continue Reading the full Article…



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Get The Word Out Wednesday #5-2015

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Get the Word Out Wednesday

Thank you for stopping by and please be sure to tell everyone you know (bloggers and readers) about the opportunity to spread the word.

It has been a busy time in “The Zippy Zebra” household.  My youngest began her new on-line (challenging) homeschool, curriculum, my oldest is still unable to walk much (even in our home) without the aid of her walker and is still unable to stand or sit for any length of time (we are petitioning for early graduation) , I began the new “Real Life” series here on the blog with plans to share a story every Tuesday and Thursday, as long as we continue to have submissions.  I, of course, have been battling my ever present migraine and back issues as well the other fun contributions of EDS.  I also began a “Closed” facebook group for encouraging those of us who find it difficult to do the everyday things in life (dishes, getting out of bed, laundry, dinner), etc…  We named it ” Celebrating Each Day, Each Project, Each Accomplishment at a time.  You can request to join here.  It is to offer encouragement to each other as we make plans for the day and try to complete them.

We will be hosting a “Get the Word Out Wednesday” Link-up EVERY  Wednesday for blogs featuring articles that will help those with a  chronic illness.

This linkup is not only for zebras but ANYONE with a chronic illness that has a personal story, help (allergen-free recipes, ideas), adaptation ideas, testimonial or anything that would be helpful or encouraging to others, (even sharing a day in your life).Continue Reading the full Article…



Real Life Stories-Marfan Journey #1

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     I’m the (now) single mother of four amazing babies; JD, Heaven, Starla, and Jasper.  I had very difficult pregnancies and three of my babies ended up being born early.

Channyn Marfan Story Baby Photo

      Despite my hard pregnancy, my second baby, Heaven held on the longest and was born right on time.  The only one, seemingly, born without complications.  At the time I found it odd that she was born with such long fingers.  When most mothers counted to make sure their baby had 10 fingers and toes, I counted to see if my baby had an extra knuckle!  I was reassured by doctors that she just had “piano playing” hands and would be just fine.

Continue Reading the full Article…



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