The Medical Dorm

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 w...

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 f...

This came to the two of us one day, because if you think about it being chronically ill is harder in more ways than you think.  There more than the obvious hardships caused by being sick.  One of Tremors’ doctors said something to her recently that prompted this.  He said something along the lines of how doctors never 100% know what their patients are doing outside of the hospital / clinic.  Meaning that they do not always know the small struggles occurring at places such as school, or work.  He said that when someone is chronically ill, they have to have a true strength to deal with all of this and learn a lot from it.  Because, of this strength spoonies are pretty much able to live double lives, one being as a patient, and another as a human being.  From all of this, of course you are are able to learn some valuable lessons.  These lessons others may learn as well without having a chronic illness, but when you learn them due to a chronic illnes...

When you walk in to the hospital and see a child laying in the bed you automatically feel bad for them but do you ever stop to look at the rest of the room. What you are not noticing is perhaps their sibling sitting in the corner, ignored, not making a sound. Everybody is always focused on the child that is sick which makes sense but that sibling in the corner is a person also.  We both have siblings that have been effected by our conditions. The reality is that any time there is a family member that is sick they automatically come first, they have to. The problem with this is that putting a child that is sick first for a few days until they get better is one thing but it becomes a lot more complicated when that child will never get better. This means that they come first, and will always come first. This creates a dynamic that is hard for the entire family.  I know about the sibling sitting in the corner of the hospital room because many years ago that was my sister. When ...