The Medical Dorm

              I am officially back at school and so is secret agent puppy. He has taken to college life like a pro, although he was raised on a college campus so he really is a pro. Aside from everybody loving him because he is cute, fun loving, and a dog, he does a lot everyday to earn his spot. While people think  am taking my dog because I felt like getting a pet, the truth is, he is the reason I got to come back from medical leave and can go to class.  He has always proven how valuable he is and this week has been no different, in fact he has even stepped it up a notch. I think he knows without my mom I will try to break the rules (he is having none of it).              When I drop something he picks them up because I can't. He braces when my heart rate spikes and I could pass out. He lays across me when my joints hurt to provide warmth and pressure. He tells me when I forget my pills which is good unle...

                                                                              Even though I have spent a year on medical leave, I have been incredibly lucky. This year would have been much harder had I faced it alone, but I didn’t have to. A year ago I first met secret agent puppy. The most nerve-wracking time was flying across country to meet him for the first time. I was so anxious, worried that he wouldn’t like me, worried that his trainers wouldn’t like me. I wanted this to work so badly, because I desperately needed him more than anybody knew.             I have been fighting with my conditions for the past twenty-three years and it gets tiring. There are days where it would be so easy to give up, and feeling alone...

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...

Here in The Medical Dorm, Nemo has been working with her service dog Secret Agent Puppy for a little over a month.  We decided that this topic needs to be addressed, because someone recently told the two of us that once you get a service dog, you have to educate everyone around you.  The sad thing is that many people do not understand manners when it comes to service dogs, and their handlers.  These manners including not understanding why they cannot pet the dog, or trying to restrict access.  While having a service dog is AMAZING, there are somethings that you get use to / will never be able to get use to. “Can I pet your dog?” : This is the question heard about a million and one times a day.  Apparently, when anyone sees a dog there first thought is that they must pet it, or they will drop dead.  This is only heightened when the dog is wearing a vest / harness.  I guess that they also do not understand that this is MY dog, and that MY dog is wo...

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)

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...

Dear Everybody who trained my service dog,                 Over the past four years you have put tireless hours in to raising a puppy that will become my service dog in just a few short weeks.  As if that is not enough,  you give the dogs away for free. Being a college student raised by a single mom I could never afford a dog, but that does not mean that I don’t desperately need the help.             Your organization truly helps people that are often times ignored by society.  I don’t have much so all I can do is say thank you over and over again but that will never be enough to actually convey what I am feeling. Everybody that had a role in training any dog in this program is my hero. Not even six months ago they were are all strangers to me. Little did I know that they existed and wanted more than anything to change somebo...