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I am Vulnerable

            I am just like any other 25 year old. I love my family, I love my dog, I love spending time with my friends, I am getting my masters degree, and I have hopes and dreams for my future. The one way that I am different from a large part of the population is that I have Ehlers Danlos, POTS, but most importantly I have Heterotaxy. This is a big word, but essentially I have multiple spleens, my heart is on the right side of my body, it is flipped, meaning the left side of my heart is where the right side should be and so on. I also only have the left side of my heart, as the right side is underdeveloped and nonfunctional.              To date I have been through two open-heart surgeries, two eye surgeries,   two feeding tube placement surgeries, and countless feeding tube changes.  Given everything that I have been through I can honestly say that I have never been so scared in my entire life. I am very vulnerable. Most likely if I get COVID-19 I will die. I know it, my docto
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A Brief Life Update

First off, we know we have been radio silent for an extended period of time.  We apologize, but in our  defense we were trying to survive college.  Add in a handful of medical problems, clinicals,  (attempting to have a) social life, and it gets busy.  We are proud to report that our hard work during our  absence paid off. We are now both college graduates, we have a year until we get our master’s degrees,  and we are both at the moment doing as well as we can do medically.  All in all, we are pretty happy with  where we are in our lives at the moment and decided that in our newly discovered free time we could  start up the blog.      A brief update on Nemo: It’s been a busy year.  I have been through 12 surgeries in the past year  (mostly occurring between August-December of 2018) in order to place a feeding tube for gastroparesis.   Long story short, I now have a J-tube and receive medications and the majority of my food via J-tube.  If you are wondering why so many s
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UPDATE

UPDATE:     We have been absent for awhile, but we do have a good reason.   WE GRADUATED! Now we are one step closer to our masters,  specifically one year until we have our masters.   Saying that we put blood, sweat and tears into getting our  bachelors is an understatement.  We survived, and we are letting nothing  stop us.  We’ve been through a lot in this past year  (countless surgeries, feeding tubes, hospital admissions,  new diagnoses  and more). Stay tuned, because it’s now  summer and we have a lot to catch up on! Thanks, Nemo, Tremors and Secret Agent Puppy
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Everybody Loves a Service Dog

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Pretty much everyone loves dogs.   It is a fact that very few people can resist the face of a cute puppy when seen on the street.   Now, we believe this cuteness factor is heightened when this dog is a service dog.   1) It’s cute 2) It has an outfit 3) It has a job 4) It can wear cute things like hats or shoes (in addition to the vest)   People stare and whisper constantly about how cute Secret Agent Puppy is.   Let’s be real, he kinda has a fan club on campus.   Our class (and professors) gets excited over the simplest things such as him wearing a raincoat, or him wearing a holiday themed bandana.   We aren’t trying to say that he isn’t cute, what we are saying is that it is unbelievable how many people fall in love with this dog even if they have never met him. People on campus LOVE him and when we say love, we mean LOVE.   The grumpiest of professors smile brightly when they see him walk into class.   They get even more excited when they get to see him perform a task, or g
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Things Professors Have Said...

            We are both college students, and in college we have had both good and bad professors.  Some professors are amazing, while others make you want to hide in your room and never leave your bed.  Sadly, we have had a few of those in the later category.  We decided today to discuss some memorable quotes from professors in both of those categories.  We are not doing this to be cruel, and we are not including any names, or descriptions.  We are doing this to show how tough college can be for those with chronic illnesses. THE WORST:             These are some things that were said to us over the past few years.  While not all sound rude, or insensitive at first, the meaning behind them are not great.   “It’s so nice that everybody here [in this class] is healthy” The first thing you have to know about our class is that multiple people have accommodations and I (Nemo) bring a service dog to class.  We are not the only ones with accommodations, or medical problems in o
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