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...

May 30, 2016

My heart hurts.  Maybe its because I am disabled and isolated from the world most of the time, but humanity is just upsetting sometimes.  Today is Memorial Day; a day that as a family we have gotten together most years and for sure a day that we go to my grandfathers’ graves.  It is a day that means a lot, as my grandfather was a veteran. 

 

My grandmother made a reservation to go to lunch as a big family last week.  Everyone had said yes and yet this morning she called me to tell me EVERYONE canceled on her.  The part that hurts my heart is that I too had to cancel because I am too sick to go out to eat. My heart hurts because there is no solid reason that the healthy members of the f...

May 24, 2016

Sometimes as adults we humans just need the love of our mommy.  It doesn’t even have to be any specific act done by her; it is just her presence, her care, her warm smile that can mean the difference between hospital and home. I am sick.  When I say sick, I mean really sick.  I know I am sick everyday and that the word sick is tossed around daily, but I mean I AM SICK.  I got my second dose of Xolair and it has left me violently ill.  I can barely walk due to muscle and joint pain; I have a fever, headache and horrific abdominal pain that I believe is my bladder.  The doctors all agree that it is a reaction to the Xolair or something IN the xolair.  BAD news is that it takes 2-3 MONTHS to leave my...

May 13, 2016

I can’t pay for my medicine that my insurance doesn’t cover so I’ve gotten creative LITERALLY. I am now making Fairy house Kits and Cupcake Bouquets.  I am selling my Fairy kits for $24.99 and the Cupcake Bouquets for $35.  You can find them both on my Etsy shop (www.etsy.com/shop/chronicallyElle) and on Craigslist for those of you that are local http://minneapolis.craigslist.org/hnp/for/5584285117.html.

 

Please share and consider making a purchase, I WILL pay for these medicines and not go deep into debt!  I am determined darnit!

May 13, 2016

 

Life is a crazy thing.  I suppose when God was in the planning stages of this whole earth and creation thing he thought about different scenarios and how to problem solve expected issues.. I am not sure…all I know is somewhere He missed a few things.  I joke.  I am just saying, why does there have to be illness?  My mom would blame Eve and that damn apple, I just think its part of a master plan by God.  I have to believe that this was His plan all along and that His idea was that struggle would make us stronger and that each of us needed a test of some sort while on earth.  My test happens to currently be my health.

 

I am typing this blog post from my little infusion room a...

May 6, 2016

Today I have a day free of doctor appointments and other things so I thought perfect time to sit down and actually blog.

 

I am sorry I struggle to get the energy to write, often.  I have been ok…OK.  Not great, not dead.  I think the Lord everyday I wake up and am still on this earth.  My to-do list is nowhere near finished and I need as many good days as possible to make my impact on this world. 

 

Since I last blogged I have been pretty steady health wise.  I am exhausted and paralyzed with extreme fatigue daily.  I go to bed at 7pm because my body will not let me sit up any more, it’s a weird feeling, but if I sit up any longer than that I get nauseated and I get a horrid headac...

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