The Medical Dorm

It may sound odd to some, but happy Rare Disease Day.  Rare Disease Day is the last day of February, and helps to bring awareness to the public about rare diseases.  Both of us are “rare.”  Tremors has Satoyoshi Syndrome which is diagnosed in around 60 people worldwide, and Nemo has half a flipped heart along with Ehlers Danlos and a list of other diagnoses.  Because we are both so rare, it is hard to get a diagnosis.  Many times rare diseases can mask themselves as other disorders, making it hard to get the correct diagnosis.  Rare diseases also often do not have treatments, and there is very little scientific research being done on them.  I can say that we are both lucky to have our diagnoses.  While we do not choose to live our lives defined by the label, we both know that our diagnosis is a large part of our lives.  It is hard for it not to when it impacts everything that you do.  For example, Tremors is unable to drive and Nemo c...

This post is specifically about having a service dog for an invisible disability. It is really important to realize that it is not always possible to tell that somebody has a disability just by looking at them. I am not trying to speak for everybody, but there are not many people out there that would willingly sign up for everything that comes along with truly having a disability, I know given the choice I wouldn't sign up for the ten, possible eleven (I always seem to forget one) different illnesses that I have been diagnosed with over the years. The top five things I have heard about my invisible disability are. You don’t look sick. You are too young to be sick. You are too pretty to be sick. So what's wrong with you? You're fine, stop lying. I can assure everybody that if I had my way I would not be sick. I love my dog, and am fine with who I am, but given the option my joints would not dislocate, I would be able to eat without pain, I would be able t...

Check out the link on the side to our page ALL about life with a Service Dog (AKA Secret Agent Puppy)

Nemo Here :) It is so great to be back and writing on The Medical Dorm again. The last few weeks have been full of spoonie experiences, most of which are completely new for me. For the first time ever I have ever been forced to leave school to focus on my medical conditions. It turns out that I had been having problems because I have gastroparesis or delayed stomach emptying. This diagnosis does not play well with my other diagnosis so that will make for an interesting year. I have learned a lot in the past two weeks. I, like many other spoonies have to learn to fight through the pain and ignore symptoms in order to be productive. I have learned that this does not always work. At the beginning of starting to write this post, I was going to write something uplifting about how it is important to always be positive even when chronic illness gets you down, but I just couldn't write it. This just kind of sucks. It is important to be positive, but it is equally as important to le...

Tremors here.  This week we are doing things a little bit differently because there is a lot happening in The Medical Dorm.   Nemo: Nemo is currently hospitalized, and has been in and out of the hospital for the past two weeks.  Nemo is having GI problems, and at the request of her doctors has gone on medical leave for school.  We hope that with the year off for medical leave that doctors can find a way to help / treat Nemo’s symptoms.  The main one being that Nemo is having difficulty eating and drinking.  (Obviously this is not pleasant)  Nemo is still getting Secret Agent Puppy in about a week now, and she is looking forward to meeting her new best friend.  Something else that is good is that Nemo’s letter to those who trained her service dog is going to be on The Mighty (coming soon).  Something that was written to give to a few individuals became something that hundreds, and hundreds of people read.  We both thank you from the b...

In the past we have thanked some of our doctors for all they have done for us.  These doctors have given us our ribbons, stood by us, and treat us like human beings.  Now, we want to thank more individuals who have changed our lives.  We have spent the past week and weekend in the hospital surrounded by amazing nurses. Tremors was in over the weekend for a scheduled infusion. Nemo was in and out of the ER this weekend, and is still in the hospital. Without nurses, we would not be able to survive our times in the hospital for sure. This is a GIANT thank you to our nurses.  These individuals are the ones who are always there for us, and always seem to know the right thing to do. Thank you, Thank you for becoming a nurse, because I honestly do not know what I would do without you.  You do more than check vitals and give out medications.  You are the one who is constantly in and out of the room.  You are the one who is making conversation and ...