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.

I can turn my arm completely around

 making my elbow point up and my hand point down.

When I walk down the hall my knees make noise

 sounding like a bowl of cereal or rattly toys.

This might not be odd if I was 60 years old

 but I am 14 and my joints shouldn’t make these noises and be quite that bold.

I have always been bendy and it used to be fun

 I could dislocate a finger and people would run.

But in the last few years it has started to hurt

Little did I know that it would soon get worse.

I became weak and dizzy at the drop of a hat

I would try to pass out when chasing my cat.

Laying on Mom with SImba

My momma was worried and didn’t know what to do.

I hate it when she says “What AM I gonna do with you?”

The weakness got worse, I developed chest pain,

Our doctor was stumped and diagnosing me became a chess game.

We would study one disease and think “Maybe it’s that”

Then something would happen and it was back to the map.

After lots of Drs, specialists and tons of research

We decided on POTS and then IT got worse.

I began breaking out when I took a bath or got warm.

I would even break out when the air changed for a storm.

I would look like a poster child for some horrible disease.

I would run a fever, have a migraine and sneeze.

There weren’t any triggers that were easy to find.

I’d be sitting on the sofa lost in my own little mind.

When I’d suddenly start itching and feel like throwing a fit.

We finally decided we needed to research it.

After hours of study and research and time

We found another rare disease to add to the line.

We know I suffer from EDS, POTS, & MCAD,

and the geneticist is still researching what is happening to me.

He is looking for Marfan Syndrome to add to the list

And much as I’d like answers it is one I’d like to miss.

What does this mean for a girl of 14?

It means I stay at home to rarely be seen.

I left my school because I am too weak and sore to attend.

I learn online and message my friends.

I dislocate my shoulder by walking down the hall.

I tower over all my friends because my genes make me tall.

I can’t go out in summer because the heat makes me weak.

I stay inside for winter because my fingers turn pink.

Not from the cold that you feel in December

Or even the chill that starts in November.

No, I get frostbite in October from attending my school

For a 14 year old girl, that just isn’t cool.

Does this mean I am depressed and just hate my life?

Or am I one of a kind and waiting for my knight?

A doctor to fix me and make me well

So this story is one others won’t have to tell.

I am all about research and spreading the word

So that others like me can have a voice to be heard.

Ask Me About EDS Med Front

If you have a story that’s anything like mine

Please check my illnesses through these websites on line.

It may not be what is wrong with you

But you won’t know until you follow it through.

Don’t feel that you are alone and can’t reach out.

That is what blogs and support groups are all about.

Loving each other, sharing support when we can

And even when necessary lending an ear or a hand.

It doesn’t matter what disease you battle day in and day out

There is support somewhere if you only reach out.

Stay strong and remember no matter what you do

There is someone out there struggling just like you.

Hospital Room at Carle

Do you want to leave a word of encouragement or share you story with Rachel?  Please do so in the comments below.


This is my youngest daughter’s story, and to be honest it doesn’t even begin to touch the struggles she has, but we thought it would be nice to reach out with something light and  fun. .

Her sister shared a more serious story from her life here.

Rachel does truly struggle each and every day with just getting up, breathing, walking, eating and living her life, BUT she doesn’t let it get her down (most days).

She is homeschooled and is very, very bright.

  She likes writing stories, designing clothes, paranormal books, cooking and interior design.

Feel free to share on your page or in your groups.  Anywhere someone might enjoy it.

You can follow Rachel’s progress in these posts:

A Positive ER visit

The Scariest Night of Our Lives

Scariest Night Update #1

Scariest Night Update #2

Dear E.R. Doc


You can read mom’s outburst about being an EDS parent at these links.

Clone Parent Wanted

Rantings Of An EDS Mom


This post is linked up at Sharing Saturday and Sharing Sunday.



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13 Comments

  • By Sharon, February 22, 2015 @ 1:48 am

    Hi Rachel! Thank you for sharing your story. You did an excellent job of writing it in verse. I know it is not easy having serious health issues at such a young age. We have some things in common. I was always the tallest kid in my class. When I was 18, I began aching terribly & having severe pain in all my joints. After being misdiagnosed quite a few times, I was finally diagnosed with Rheumatoid Arthritis, Fibromyalgia, Neuropathy, Degenerative disc disease, Reynaud’s, Gran Mal Seizure disorder and an autoimmune mouth condition. Many doctors feel I have Marfan, but the tests do not show I have it. Over the years I’ve had many hospitalizations & over 20 major surgeries. I’ve had RA the longest, for 45 years. Having serious diseases at a young age can make you wonder about your future. Try not to let your medical conditions rule your life decisions. Even with medical problems, I was able to have a career & work for over 40 years (taking off only for surgeries), be in a happy marriage for 36 years and raise 2 beautiful, successful daughters. Take life one day at a time and take good care of yourself so you can have the highest quality of life possible. I hope you are having a good night. Sharon

  • By TinaMiller, February 25, 2015 @ 10:13 pm

    Sharon,
    Thank you for the encouragement. Rachel read it as well. Your story shows you have overcome so much and still going strong. Would consider submitting a story to our real life section and encourage someone else?
    The details can be found here at http://thezippyzebra.com/?page_id=790

  • By Joy Arnold, February 22, 2015 @ 2:26 am

    Rachel I would like to follow your progress and research if I may. I don’t have the things you have but I have my own struggles. I’m a lot older than you are and I’m frequently house bound. I’m young at heart if that counts. I think you right very well. It’s a good outlet too. I look forward to hearing from you.
    Joy

  • By Tania Manner, February 22, 2015 @ 12:14 pm

    My daughter is 14 also. Has POTS, EDS and chiari. You are strong, you are beautiful. Love your written words.

  • By TinaMiller, February 25, 2015 @ 10:09 pm

    Thank you for your encouragement! I hope that your daughter stays strong and finds some strength as well as results.

  • By Yvonne, February 23, 2015 @ 7:25 pm

    Rachel,
    I have Eoe and Mcad. You made me realize that I have been waiting for the prince to rescue me… no diagnosis or cure will ever do that.. for 14.. you are wise…

  • By TinaMiller, February 25, 2015 @ 10:07 pm

    Yvonne, Rachel asked me what EOE is and I wasn’t sure. Thank you for your encouragement.

  • By Jody, February 23, 2015 @ 8:00 pm

    Rachel, You must be a strong, beautiful young lady. I pray that there will be answers in the near future and that your story will help another.

  • By TinaMiller, February 25, 2015 @ 10:05 pm

    Thank you Jody! Rachel was encouraged by you prayers and thoughts. 🙂

  • By Sonya Comer, February 25, 2015 @ 12:05 pm

    Rachel, I didn’t know you were going through all this. I love the catchy way you wrote your story! Well done! I will be praying for you as you deal with all the symptoms of your diseases. Hugs from an old friend!

  • By TinaMiller, February 25, 2015 @ 9:52 pm

    Rachel says Thank You. She gets to read all the comments. Prayers are appreciated and we hope that all of you are well.

Other Links to this Post

  1. The Zippy Zebra » Real Life Stories #4-Awaiting Diagnosis Marfan Syndrome — February 24, 2015 @ 9:42 am

  2. The Zippy Zebra » Letter From An Overprotective Mom — March 1, 2015 @ 4:42 pm

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