Welcome to the wide world of ELLE

May 31, 2016

 

Hello new person to Elle,

 

This is a quick introduction to Elle and who she is and what she is about.  If you already know Elle, please feel free to edit and make changes to this document.  If you do not know Elle, sit back, prepare yourself a cocktail or coffee and enjoy.

            Elle is a 33 year old woman-toddler who has multiple genetic diseases and mutations that have left her completely disabled for the last 5 years of her life.  She requires 24-hour care. She spends her days in bed and or on the couch usually researching ideas for cures, temporary fixes or celebrity gossip.  She enjoys face booking with her old students, seeing her family and her two dogs that are basically her babies.

            Elle has a Masters Degree in Education and Bachelors in Spanish.  She also has many PhD credits in which will never finish to be anything because her brain is mush. She spent 10 years teaching the Spanish Language to those who were not thrilled to be in school, happy to be in class nor really amped to participate in society properly.  She thrived and if you would like to imagine more on this, please insert the DVD of “Freedom Writers” starring Jennifer Gardner. Unfortunately Elle got too ill to continue teaching in the classroom and as she eased her way into sick/disabled life she worked on and off modeling and tried to continue teaching/tutoring.  Highlights of her years spent in academia include: Many many gang fights, getting punched in the face, getting a door knob to the spine, her pants splitting open and one year teaching Spanish immersion kindergarten that we really rarely reference.

            If you see Elle standing or walking, please be advised of two things, 1: She is really tall.  6’.  2:  She can topple over at any moment so please be careful. Also two other physical things should be noted about Elle, she has very curly hair, it is not a perm, and it is natural.  She also has a shape very similar to Jennifer Lopez, which astonishes people as Elle is neither athletic nor Latina.

            Elle has many different abnormal diseases and processes happening in her body.  The 3, which cause the most life disturbance, are:  Mast Cell Disease, POTS (Postural Orthostatic Tachycardia Syndrome) and Ehlers-Danlos syndrome. Mast cell causes the POTS and possibly the Ehlers-Danlos.  Research is happening everyday and someday they hope to have answers. 

            Elle passes out.  She loses consciousness.  She goes kaboom. Everyday.  It is not a rare thing and everyone around her knows that she just simply flops.  Thankfully her hubby catches her often and her pacemaker also helps to give her a semi second of notice when it is going to happen. 

            Elle is tired.  Due to all of the miscommunication, fast heartbeats and other ridiculousness in her body, Elle is exhausted 90% of the time.  The kind of exhaustion you experience when you run 5 miles, stay up 24 hours and then eat at the buffet.  That’s how tired Elle is, daily.

            Elle’s Body hurts.  Her body is like a loose rubber band and everything just kinda flippity flops instead of being tight and firm. This includes her joints, which causes extreme pain and aching. She gets horrid headaches; neck aches and feels often like it’s just too much to keep her head up.  Elle’s abdomen has been through a billion surgeries and because of this, it also hurts.  She first had a 15lb tumor when she was 18, then scar tissue, then her intestine tried to die, yada yada, blah.

            Elle can’t have kids.  One day her uterus fell out. So, she doesn’t have one anymore.  Don’t ask about the kids.  She is pretty sick of hearing about it and about adoption.  No child should have to deal with the life Elle is currently living, that wouldn’t be fair to anyone, so no, she will not adopt anytime soon. Her dogs keep her happy and if she is feeling hormonal, she can cry it out in a pillow or call her mommy and everything becomes right again in the world.

            Elle is not beaten.  She has too much heparin in her blood, which causes it not to clot very well.  This means she bleeds…a lot.  It also means she bruises…a lot.  She will never know how she got giant bruises so don’t ask.  Could have easily been the couch, wheelchair or corner of the cabinet, one will never know.  Her bruising is like a secret mystery, only God knows the story.

            Finally it should be noted that Elle will explain absolutely anything to you in detail if you ask.  She is an open book and is happy to spread any sort of knowledge about invisible illness and invisible disease possible.  Elle may not be living her dream life but she is thankful to still be alive. She is eternally optimistic and easy going.

 

Thank you for taking this mini-moment to get to know Elle,

 

DVD coming soon.

 

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