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Showing posts from May, 2017

Wig Life

Tremors here today to talk about something that is kind of a big part of my life.  For those of you who are new here, or who don’t remember, I am missing a lot of my hair.  Basically, I am pretty much bald, give or take a few patches of hair here or there thanks to alopecia.  Because of this I wear hats, or a wig.  (Having little to no hair makes your head really cold, and at the same time you do not want to get a sunburn on your head)  I have had a wig for around 3 years now, and let’s just say that it is a love/hate relationship.   My primary wig is nice, like really nice.  It’s a human hair wig that matches my previous hair color almost perfectly.  The primary one that I wear is called a gripper, meaning that there is a band around it on the inside that grips my head making it more difficult for it to come off.  It goes past my shoulders, and has baby hairs cut to look more natural.  This is to prevent the usual boxy look of a wig, since most wigs have too much hair, and do no

Life With No Cure

A cure.  Something that is so simple is something that is out of reach for so many.  A cure is defined as a substance or treatment that cures a disease or condition.  To many, all they need to do is receive the cure to what condition they have.  However, the two of us are not one of these people.  We are the people who desperately want a cure, but know that we most likely will not be able to get one.  We are forced to settle for various treatments and other methods to cope with these various medical conditions.  While a treatment is progress, it is not long term, and it does not magically take away all of the symptoms of the condition.   People always say things along the lines of “hoping for a cure.”  While hope is great, hope only goes so far.  I mean, a cure means that there is no more disease, and that you are healthy.  You do not know and probably do not know what we would do to hear the words that there is a cure for what we have.  We would probably do just about anyt

Ehlers Danlos Awareness Month

May is Ehlers Danlos awareness month, and in honor of that this week's post is going to be about my (Nemo) journey and struggles that I have had with Ehlers Danlos in the past. Ehlers Danlos is a connective tissue disorder which affects the entire body. This makes joints hypermobile and my body is prone to dislocating. While this condition is incredibly painful and makes life difficult on a daily basis it is also an invisible disability.         Although I was not diagnosed with EDS until I was 20 looking back there were signs of it throughout my entire life. As a kid I would always fall and get hurt. We would than have to go to the doctor, get the arm or ankle x-rayed and find out that it was not broken just most likely hyperextended. In middle school my kneecap completely dislocated and instead of panicking I kept walking on it since it was a sensation that I had felt before.         Getting diagnosed with EDS was not easy. I did not want to go to see the gene

Happy Graduation (to healthy people)

This week is an especially hard week since I (Nemo) should be just about to graduate college.  However, this is sadly not the case.  I have tried to complete my junior year of college now twice, and next year when I am off for medical leave I will return to try junior year a third time.  Let me tell you that it is hard to be watching people do things that you are never going to be able to do, or be able to do “on time.”  Graduation is just one of these many events that I am unable to fully participate in.  Yes, I am determined to graduate one day, but it will not be with the peers that I started with, or in the field that I intended.  Chronic illness hurts you in more ways than just one.  When you are little you are told that you can be and do ANYTHING.  You are told to shoot for the stars, and when you cannot, it hurts. Chronic Illness forces you to change your entire life to accommodate it.   This week I have seen more pictures and posts about graduation than I would like