The Medical Dorm

First, we would like to apologize/acknowledge our absence over summer.  Simply put, our summers were full of hospitalizations, appointments, medication changes, vacations, and more.  Now, with colleges starting back up again I (Tremors) decided that it was time for another survival tip: how to survive the back to school rush. Back to school is something that everyone dreads in some way, shape, or form.  It means the end of the freedom of summer time, and back to the grind at school.  Which is frankly isn't something I look forward to since I really like relaxing over summer.  When you go back to school as a spoonie there is a lot that you have to do.  You need to make sure you have your housing set, that you have your accommodations in place, you need to talk to your professors, and you have to get your body use to a new schedule.  None of this is something that people truly enjoy doing. To survive back to school as a spoonie: 1.) Do not try to d...

I don’t know about you, but we certainly have noticed quite a few books / movies that are about individuals with some sort of illness.  Now, if you look at these books / movies closer there is something pretty obvious about them.  They are pretty much all romances, and let’s just say the two of our life experiences do not match up (at all).  Today we decided to examine a little deeper how little our lives relate to these stories that are beloved by many.  We aren’t saying don’t read these books, we are just saying from the point of view of someone with a chronic illness, there is not a lot of things in common.   Chronic Illnesses aren’t glamorous: Chronic illness is more than a label.  It is something that takes over your life, and the lives of everyone around you.  It is days of feeling too sick to get out of bed.  Days of taking a crazy amount of medications, and some including some not so fun side effects.  There are countless a...

When you have a chronic illness a lot people do not know how to respond or how to talk to you about it.  They can be confused, feel bad, or can be completely clueless.  Now some people are great, and they are the people that in someway can understand what you are going through (maybe they are going through it themselves, know someone who has, or they are just good at being there for you).  However, more often than not you find the individuals who have no idea how to address someone who is chronically ill.  Today we decided to tell you about 2 things people have said to us that aren’t the best things to say to someone who is chronically ill.   This honestly sounds like something that we could have made up.  I mean, who would say something like this to a person?  Sadly, this has happened a lot, and always leads the intense need/desire to roll your eyes.  The statement goes along the lines of “Oh I understand what you are going through--I watch ...

This last month has been one of the craziest and busiest medical months in my entire life. I was in the emergency room four times, and out of that was hospitalized twice. I was started on six new medications, all of which have side effects. Even with this, I was able to spend my birthday at Universal seeing the Simpsons, and Harry Potter world, IT WAS AMAZING!!! The reason that I (Nemo) thought that this post was so important is because it puts being in the hospital into perspective. The reason that I am willing to go through so many different treatments and be put on new drugs all with a myriad of side effects is because I want to be able to live my life. It is important to fight for yourself and your life. Yes, medical appointment are important but they should never be the only thing in your life. Upon leaving the hospital I knew that I would most likely have to return. While in LA I went to universal two days in a row, both days pushing my body until it could no longer functi...

First, we would both like to apologize for our irregular posting these past few weeks.  Even though it is summer and that usually means that your days are free.  It usually means that you have all the time in the world to do what you want.  Sadly, chronic illness does not let that happen.  Our past few weeks have been filled with hospital visits, clinic appointments, medication changes, tests, and more. While we are working on having a more regular posting schedule, we would like to thank each and every one of you for sticking with us.  All of you, the readers, are the reason that we are able to write all of these posts.  The responses for these posts amazed us, and we would not be able to do it without each and every one of you! Thank you again and WE BELIEVE IN YOU! -Nemo, Tremors and Secret Agent Puppy  P.S. here are some pictures of Secret Agent Puppy, because let's be honest here--he's just adorable Nap time = Life Because Secre...

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...