The Medical Dorm

We want The Medical Dorm to be able to help those around us.  We want to help raise awareness and help individuals understand life with a chronic illness.  We also want to be able to help those in our shoes (AKA college students) be able to follow their dreams and achieve their goals.  We decided to make a new section of our blog filled with various college survival tips.  These posts will hopefully be able to inform people with and without chronic illnesses ways to navigate college life.  Ranging from talking to professors to living on campus and everything else inbetween.  Within the next few weeks we are also hoping to join the group Chronic Illness Bloggers.  If you are new to the blog thanks for visiting us and if you have been here before thanks for sticking with us! WE BELIEVE IN YOU! -Nemo and Tremors

There are always fears in the chronic illness world.  There is the fear that you won’t be diagnosed.  The fear that the treatment won’t work.  Or, the fear that there is nothing more that can be done.  Everyone has fears, and at times you have to face them.  Today, we are talking about a fear that many people have, not just those with chronic illnesses.  Needles.  I mean, needles aren’t great.  They poke and when you are in the hospital there are always needles at the ready.  We are sharing our two stories about how our fear of needles has grown and changed.   Tremors: When I was little I HATED needles with a passion.  I hated getting vaccinations, and would dread the appointments.  Now, all of that has changed somewhat.  I have been told by a number of people that I am too comfortable around needles now.  I started having injections in the back of my head once a month for alopecia around six years ago.  At first, I hated going and would spend the whole ride home about to cry.

Over this past year, my life has had a lot of changes in it. Walking has become increasingly difficult. In fact today I went to a doctors appointment where the doctor said that either I would have to walk with a dislocated hip or a hip contracture. There is nothing that the doctors can do anymore. For the most part, I will continue to loose my ability to walk until I am wheelchair bound or mostly wheelchair bound. Similarly I was diagnosed with a condition where the treatment would give me heart failure. This is difficult because this condition makes it very hard to walk, or even stand up. Either I can treat one condition and most likely damage my heart, or I can protect my heart and deal with having to be mostly sedentary. Clearly, there is no option that is good at the current moment. The reason that I am writing about this is not to talk about how my medical conditions are making my life difficult, but instead it is to talk about new hope. This weekend I was able to go and train

Tremors here today.  No one ever thinks that they will lose their hair.  Hair loss is seen as a laughing matter, and those who are experiencing hair loss (usually old, fat men) are made fun of for not having a full head of hair.  I (Tremors) started losing my hair in middle school.  One day I woke up and found out that I had two bald spots on the back of my head.  I was then diagnosed with alopecia.  Alopecia is a common autoimmune disease that causes hair loss that can range from just the scalp, to the entire body.  Later, I found out that my alopecia was related to my Satoyoshi Syndrome (We found this out when I was in high school).  Each bald spot on my scalp was around the size of a quarter more or less.  From there, my hair loss changed and the bald spots would create different patterns on my head.  I tried all different treatments to try to keep my remaining hair, and grow back what I lost.  My head was burned, poked and prodded.  Eventually I decided that I had enough, and acce

There are always places where you feel more comfortable showing who you truly are than others.  The two of us have no problem looking sick, or like we are having issues in the comfort of our dorm room.  However, in public we do not always want to be seen/labeled.  The label of “sick,” “disabled,” or “broken” follow us around whether we like it or not.  When your condition is invisible, or mostly hidden it can be easier to escape the labels some days.  But, there still are days when life decides to throw you a curveball.  Those are the days when everything seems to go wrong.  Those are the days when everyone is looking and whispering.  Those are the days when you look how you feel internally.  (Usually you look not so great)   For the most part my disability is invisible, or it was. I have gotten to the point where I need to be in a wheelchair part of the time. The first day that I was in a wheelchair it was so scary. I thought about what it would be like for the longest time, and I

Happy Thanksgiving everybody. While the holidays are a great time, for people with chronic illness there can be some additional complications with all of the activity going on. This week we are writing about things that every person with chronic illness is thankful for. A diagnosis- A diagnosis seems so small and insignificant to some, or those without a chronic illness.  However, a diagnosis allows for help, and it gives answers.  It puts a name to the symptoms. Having people around that understand- These people are AMAZING, they are the ones who understand what is happening and do not judge.  They are the people that are your rock, and you always know that they are in your corner.   A break to lie down once in awhile- Sometimes all you need are a few days to take it easy.  Even though there are downsides, and family activities may be too much at times, the break is needed.  Not having to get up to go to work/class allows for a breather.   M

There are always doctors that make a difference.  They are the ones who give the life changing diagnosis, the ones who understand and the ones who make everything seem a little clearer.  They are the doctors who realize that I have a life outside of the hospital. They understand the real reason I endure treatment after treatment, it is so I can live my life outside the hospital. These doctors have become more family than medical professional, the ones who know you TOO well, the one you can’t hide anything from.  This is a joint thank you to all of these individuals, the ones who always have our back.   Thank you, Thank you for being the doctor who tries to understand everything.  I know it can be difficult, I’m a one in a million (or more) case.  I know that doesn’t make it easy on you, because I know it sure isn’t easy to me.  You are the one who diagnosed me, the one who actually read the signs.  You are the one who listens to me and knows what treatments will make a d

When you have a chronic illness there are a lot of things that may seem weird to some.  The two of us have some things kept in our room that may seem odd to outsiders.  These include but are not limited to medications, wigs/wig heads, braces and various other medical devices.  Of course, we do not find these items to be weird, but we know that they are not “normal.” The Pulse Ox Game FUN FACT Nemo just bought a pulse ox monitor (it’s purple) and it has created a fun and exciting new game.  You see, there are times when we get really bored and we really do not want to do homework (ex. now).  That created the always fun and exciting pulse ox game.   HOW TO: Have Nemo put on the monitor and play one of the following modes MODES: CHALLENGE MODE: see if taking deep breaths can raise oxygen--the goal is to get oxygen above 93 ACTIVITY MODE: see the greatest distance in “normal” in heart rate and oxygen while performing daily tasks (Best/High score is 81(oxygen) and 121(h