Monday, December 18, 2017

Being a Chronically Ill College Student

Now, if you have been on our blog before, you know that we are college students, and often talk about college life. Today, we decided to do that once again. Specifically, addressing somethings people often do not think of when in college.

When you are chronically ill, some things just become a part of your everyday life.  Now, I’m not talking about pills, appointments, or restrictions.  I’m talking about the attitudes, and behavior changes.  I can’t tell you how many times Nemo and I have texted, or told each other how determined we are to get something done.  We have had multiple pep talks about graduating, and getting our degrees.  Going in depth about how we are going to let NOTHING stand in our way.  How our future is ours to make, and that we won’t let the doubters, or the administration get in our way.  To summarize the texts, it’s a lot of we can do this, and responses of hell yeah we can.
     Pretty much the whole world is doubting us.  We are two chronically ill twenty-something year old girls in an accelerated masters program.  That would make someone doubt the capabilities of a “normal” person.  For us, it becomes (at least) 10x harder.  They don’t think we will show up to class, because of our conditions.  What they don’t understand is that we show up all the time unless it is ER worthy, or sometimes the professors figure out we are trying to hide that the symptoms are actually ER worthy, and send us home.  No one thinks that we can actually complete our assignments on time, not realizing that we have completed many major assignments from a hospital bed.  All they see are our limitations.  They don’t stop to think of the positives we may have gained.  To them, there are no positives, only negatives.  We can think outside of the box, and we have unique points of view.  We know how to think like a patient, because we often are one.  Medical lingo is a second language to us, and we are not afraid to use it.  They don’t realize that we may be very on top of our work, or that we might be able to teach the whole class the topic since we studied so hard (or because we have lived it).  
     We are both extremely stubborn, and you can bet that this has made us become even more stubborn.  With everyone wanting to see us fail, we can’t help but want to prove them wrong.  While they see our limitations, we are determined to make them see what we can do.  

Just remember to show them you are more than capable, and that you can succeed


-Nemo, Tremors, and Secret Agent Puppy

Wednesday, December 13, 2017

Service Dog and Medical Leave


               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 while everybody else is living their life just makes the situation worse. Prior to considering a service dog I got sick enough to have to leave nursing school, move back home, drop classes in OT school, and was facing leaving school all together which eventually resulted in my year long medical leave. After many hospital stays and specialized clinics I was told that because of my combination of conditions there was nothing that could be done to improve my life. I was always going to be stuck living at home and would have to leave the house with my mom so that she could help with mobility should something dislocate.
            Even though we had to fly across the country to meet a dog, which may or may not become my service dog it was completely worth it because we had nowhere else to turn and I wanted to give up after loosing all my independence. Little did I know my life was going to majorly change after landing in Illinois for the first time.  We had no idea where we were and all of a sudden a college student that we had never met comes walking towards us with a perfectly behaved yellow lab. It was one of the best moments of my life because it offered that hope that had been taken away from me.
            Well needless to say this yellow lab is now secret agent puppy. I went from being pretty homebound to getting back out in the world. This year alone we have gone to Disneyland, Universal, Hollywood, Seattle, Texas, the California Redwoods, Alcatraz, Chicago, and all over the city. Now instead of staying in my house for a week at a time, I go out every day for most of the day. In January we are also going to be moving in to a dorm making secret agent puppy the first dog to ever live in the dorm and I can’t wait. Without the dog this year would have gone so differently. I definitely would not have had the courage to try and get specialized help for my conditions, nor would I have had the confidence to go out in the world when I am having a bad day which is isolating given my conditions are getting worse not better.

            Even my friends have noticed a difference. I spend a lot more time with them and am a lot happier because with secret agent puppy I know that he will help me when I need it so that I don’t have to constantly ask my friends. While they were always happy to help it is not fun to always feel like a burden, it was usually easier to just stay home. If I were told a year ago that by the end of the year I would be more active than I ever have in the past I would have walked away, but it just goes to show that there is always hope out there.

Wednesday, November 22, 2017

When People Don't Know What is "Wrong" With You (Bald Edition)

It gets really hard to keep track of who knows what concerning my medical condition.  I never know who knows the whole story, or who is in the dark.  This makes life a little bit more difficult.  If you didn’t already know, I (Tremors) am kinda bald.  By kinda, I mean that I do have some hair, but it’s patchy and does not stick around long (and it’s super short).  (Just ask Nemo, she looks for shapes in the patches)  

Now, since I am in my own dorm room, my bathroom is connected to another room where two people I had not met before live.  So, they naturally did not know that their new bathroom buddy is a bald twenty-something girl.  This means that they believe they can get away with certain things.  They currently think that they can claim that the hairballs in the shower can’t possibly be theirs.  Or that the hair scattered across the floor must be mine, because if it was theirs it would be picked up ASAP.  Let me tell you, no one wants to pick up the hairballs.  And the bald girl REALLY doesn’t want to pick up your hairballs.  1) Because it’s gross 2) Because it’s not mine (and I can easily prove it)  

Now, you may be thinking to yourself, but what if they don’t know you are bald.  Well, to that I reply, I don’t exactly hide it.  I wear a wig to class most of the time, but when I am not in class I am most likely not wearing a wig.  There are some days where I decide to wear a wig, but it’s mostly when I think it is too hot to wear a beanie, or when I don’t think that a beanie goes well with my outfit, or it is too hot to be wearing a beanie.  Other than that, I am wearing my beanie without a care in the world.  Again, you might be thinking that might not be obvious enough.  Let me tell you, these beanies fit my head snugly, and there is no bump from a bun, or any hair sticking out of the beanie.  They have also been in my room when my wig was on my dresser, and not on my head (I was wearing a beanie).  

About the wig now.  It’s a really nice wig.  It’s human hair, and looks very convincing on.  Now comes the awkward part of being the bald girl in the wig.  People come up and compliment you on your “beautiful hair” and you want to burst out laughing.  Usually, if it ends in “Thank you, it’s not mine.  It’s a wig,” or an awkward redirect.  The redirect happening if it’s someone comments and you really hate to break it to them.  I’ve had people ask me what I do to my hair, if I recently dyed my hair, if I did something different, and just about any other question that does not include asking if it is a wig.  Personally, it is entertaining to see people figure out that I am wearing a wig.  It leads to some awkwardness, sure, but it’s pretty funny.  Apparently they don’t notice me with hair on one minute, and the next bald under a beanie.  

Sometimes people are just a bit clueless.  I mean, blaming the hairballs on the bald girl isn’t the best idea.  I understand that it is a bit difficult to understand medical conditions.  However, people still have difficulty.  But please, if you are living with someone who is bald, please know that they know the long hair in the drain is not theirs.  

To everyone going through something similar to this we understand how annoying it can be and


-Nemo, Tremors and Secret Agent Puppy

Wednesday, November 15, 2017

Why I Don't Dream

People often ask me (Tremors) what I think my life would be like if I did not have a chronic illness.  They always say something along the line of, how I must have had goals and dreams prior to my diagnosis.  That I was not born with this illness, and that I was diagnosed in high school.  To tell you the truth, I haven’t dreamed much about my life without my chronic illness.  Call me crazy, but I don’t think it does me much good.  

Maybe I’m just not that much of an imaginative person.  I did not grow up with a dream school, or a plan of what I thought my life would be.  I never dreamed of how my wedding would look, or where I would travel if I had the ability to go anywhere.  To this day, I do not know why younger me decided against dreaming up my future.  Honestly, I am almost glad looking back.  I don’t want to dwell on what I cannot do.  I do not want to be stuck in the never ending cycles of what ifs, or if onlys.  I would much rather focus on what I can do.  

To me, the what ifs would only hurt me.  I would have to wake up everyday knowing that I am unable to live out my dream.  I know that sounds pessimistic, but it is what works for me.  The future is a large unknown.  To me, these dreams would almost get in the way of my life.  For example, if I had a lifelong dream of being able to travel wherever I wanted, whenever I wanted, it would be crushed.  Sadly, my plans largely revolve on my medical life, and its schedule.  

I am in no way saying that no one with a chronic illness should dream.  I am just saying how I am, and how I am able to cope.  My coping focuses on the present, and what I am able to do.  I decided to focus on my abilities, and making the most of what I am able to do.  I still try my best to live my life in the moment, and not let my chronic illness define me.  To me, dreams would almost be a way of letting the illness win.  A way of it saying, “you can’t do this,” “you won’t do this,” or “I win.”

To all of you out there with a chronic illness,


-Nemo, Tremors and Secret Agent Puppy

Wednesday, November 8, 2017

Another Lifetime

          It is weird to think of being defined by one thing but the reality is that my life is and always has been controlled by my disability. As a little girl all my friends played sports while I sat on the sidelines and watched. This was nobody's fault. I don't expect everyone to live with my restrictions but I do wish I knew what it was like to be able bodied even just for one day.
          Would I have grown up playing sports? To this day all I remember about sports is trying to be like everybody else. What always ended up happening is that I would fall and get really hurt, often times winding up in a cast. Now we know this is because I had undiagnosed Ehlers Danlos Syndrome.
         Would I still want to go in to medicine? My whole life I have wanted to help people the same way that others helped me when I was little, but without my health issues I would have never needed that help. What degree would I be pursuing, and furthermore would I have already graduated? Would I be working in a field I was passionate about or are my challenges what give me passion. Would I have even have gone to college without the drive I get from having to work harder than everybody else for everything I want?
        What about traveling. I am stuck in California because of my health insurance; I could get sick at any time with no warning. Without this restriction I could go anywhere, do anything. Would I live in Paris, would I have been to Canada, would I live somewhere that I can't even imagine in this life?
        Who would my friends be. Several of my closes friends have a chronic illness. Similarly, all of my friends have to accept my chronic illness meaning that they are all accepting people.  Without my chronic illness would my friends be closed minded, would I be closed minded? That would make me what I hate most.
       Without my chronic illness my life would absolutely be different. I could go anywhere, be anything. Right now I have to face the fact that I am to sick for a lot of my dreams, and that will become even more true as I get worse. As my illness progress I will most likely need things like a wheelchair, joint surgeries, and a heart transplant.  I have so many dreams that are, and have always been, halted by reality.
        How can one thing define my so much? Is it because I let it? If I just ignore it will it go away? I just wish the sky was the limit, but in order for that to be possible I would need to be a different person.
        I have always dreamt about who I might be if I were not held back by my illnesses. A lot of this is probably because I have a healthy twin sister who is doing a lot of what I wish I could do. I am happy with who I am but it is hard not to think about what could be possible if I were different.

To everybody dealing with chronic illness don't be afraid to dream


- Nemo, Tremors, and Secret Agent Puppy