Living life with multiple chronic illnesses…. and some other stuff!

Who am I and what am I doing with this blog?

My name is Kerrilynn and I am a young artist living with a chronic illness.  I have Ehlers-Danlos Syndrome.  It is important to me to raise as much awareness as I can with this rare disorder.  It’s been nicknamed the “Zebra Disease” because it mimics so many other illnesses and conditions including, but certainly not limiting to, Lupus, Rheumatoid Arthritis, Muscular Distrophy,  Fibromyalgia, etc.  It took me (no, not doctors, I had to do the research myself) 25 years to get a proper diagnosis.  Until then, I had been treated for Undifferentiated Seronegative Spondyloarthropathy.  Yea, say that 5 times fast! Ehlers-Danlos Syndrome (EDS) affects all systems of the body since it is a collagen disorder (remember 7th grade biology? Collagen is the glue that holds the body together).  Hence, there are many seemingly unrelated complications and symptoms.

I also have Aspergers Syndrome and dyslexia.  Honestly, I don’t feel that it is a handicap even though some things are difficult for me.   The opposite of Autism Spectrum Disorder is Neuro-Typical.  So really if you think of it Autism Spectrum Disorders are just different levels of Neuro-Deviance.  Our brains are wired differently.  Sure, there are difficulties when it comes to socializing and communication that can be crippling at times.  Those are the bad days, but there are good days, too.  It was a relief to me to finally know why I was “different” and why I had more trouble in certain areas than other kids, and now adults.  Autism and Aspergers (really Aspergers is just a higher level functioning of Autism) are on a spectrum, there are those that I greatly impaired by it, and those that are minimally impaired, and those that are somewhere in between.

Living with chronic illness and Aspergers is a big part of my life, but it’s not my whole life.  Or, at least, I try not to let it take over my life.  I am an artist of sorts.  I draw, paint, sew, knit, crochet, photograph, and do graphic design.  These are the things that help me stay sane!  Having this blog is a way to express all these things and show them off mercilessly! As well as advocate for my conditions and myself!


3 Comment(s)

  1. autisticaplanet

    June 6, 2012 at 8:16 am

    Hi Kerrilynn, remember me, Allison from You Tube? I have thought about you over the past 2 years I think it’s been. I’m sorry we lost touch…I tried contacting you, but things must not have been going well. I hope they are now. I live with an invisible disability that brings daily challenges, too. I wear out both mentally & physically, but I am grateful to be employed now & enjoy a greater level of freedom than when we connected on YT. If you wish to stay in touch, please visit my blog. If not, that’s fine, too.

    • Kerrilynn

      June 6, 2012 at 11:05 am

      Hello, YES, I remember you! I haven’t been making as many youtube videos lately. I keep planning to, but then never get around to it. I’m trying to be more active with this blog. I do have some videos planned, it’s just a matter of getting around to doing them. As with any chronic illness, things have been up and down the last 2 years. I’m just trying to do the best I can with what I have. I no loner use a wheelchair, which is fantastic, but I still struggle with Autonomic Dysregulation, lots of fatigue and chronic pain. Having a chronic illness, especially one that isn’t well understood or well known, is a full time job! Hope you are well!

  2. autisticaplanet

    June 6, 2012 at 11:13 am

    That is fantastic that you no longer need a wheelchair. I am much more comfortable with blogging but still vlog from time to time. I have a job, but people treat me like garbage. Fortunately I work with cats. I love that I don’t have to work with people!

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