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

WE BELIEVE IN YOU!

-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,

WE BELIEVE IN YOU!

-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

WE BELIEVE IN YOU 

- Nemo, Tremors, and Secret Agent Puppy

Thursday, November 2, 2017

Quotes Coming Soon!

Check out the new page on the sidebar entitles QUOTES.

It is a page where we will be posting various quotes that we hear.  These are things that people say to us about our chronic illnesses.  Some of these people think they know best, and know what they are talking about, but they really don't.  This is a place for us to respond to the comments and questions we hear on a day to day basis. 

THE QUOTES ARE NOW UP 

Wednesday, November 1, 2017

It Just Keeps Coming

           I was born with a heart defect, actually multiple heart defects. It was so rare, what else could be wrong, I already got my misfortune with that diagnosis.  That didn’t stop anything though, why cant life just be a little bit more fair. I volunteer and try to help as many people as I can, I don’t deserve to have my life controlled by illness.
            With the diagnosis of Hypoplastic Right Heart Syndrome I lost the dream of ever having biological kids, and gained the reality of one day needing a heart transplant. With the diagnosis of Ehlers Danlos I have to face that fact that one day I might be in a wheelchair, and gained the ability to dislocate my thumb by doing something as mundane as opening a microwave. With the diagnosis of Postural Orthostatic Tachycardia syndrome I lost by right to be a nurse, and gained the ability to get dizzy and faint when standing up. With my diagnosis of gastroperesis I lost my ability to eat and gained the ability to fast for four days straight even when all I wan to do it eat. Why can’t it be possible to gain something good, sometimes the hill is just to steep to climb, eventually it just feels like there is nothing left.
            I always had my life planned out, I knew exactly what I wanted to do. I wanted to be a pediatric cardiac nurse to help children that were born like I was. I was even realistic and knew that I would have to work twice as hard as everybody else to keep up while struggling with being sick. I was willing and up for the challenge.  Unfortunately, I learned that sometimes it’s just not possible to work hard enough to keep up with the demands of chronic medical conditions. Now I am stuck.
            I am stuck watching all of my friends that graduated live the life that I so desperately wanted. How is it possible to form a new life when your old life, your dream follows you around? I am stuck watching my sister travel the world and live a normal life while I can’t leave the state because I won't have medical insurance. How is it even possible to move forward knowing that every step you take will have a hurdle?