Tuesday, August 26, 2014

Imagine...Memoir Poem

A life filled with
and pain.

being told you have this disease.
What if that disease had no treatment?
No surgery, no magic pill, no chance of remission,
and there is no cure.

Life would never be the same
That perfect happy life I once had
no longer exists.
It's like my life was sucked into a tornado
then spit back out again
and shattered into a million and one pieces.

what it feels like
to run on nothing.
Your energy level hits rock bottom.
It's like two double A batteries trying to run a car
Doesn't work well...does it?

watching your body fail
your organs dying one by one
but your mind is still alive.

I don't have to imagine.
This life...
Is my reality.

Monday, August 18, 2014

First Day of School(Junior Year)

Only I would be the coolest kid on the planet to have to leave class to go to the surgeon's office on the first day of school. I swear everyone in my class thought I was insane for having early dismissal. The new building is up and running! There is a lot of walking involved! For anyone who knows I go to this gigantic high school! It's a lot bigger than your average high school! The new building has three floors and walking has proved to be a challenge today. I will be going full time this year which is exhausting on my body. In the past couple months I have had leg pain that has not improved and extra walking makes it hurt worse. My joints in my knees, my bones, and just in general my legs hurt! It isn't like the muscle pain from which I experienced with IV Keppra but it is different.

I become exhausted very easy as many know I often don't have the energy to keep up with my friends daily. Three flights of stairs is hard! Last week I was given the option to use the elevator except I am stubborn and I just did not want to do that! Well today I really should have. I only went half a day and I am just dead! My back hurts, my joints hurt, my knees hurt, my bones hurt, and well my entire body hurts! I haven't struggled with physical limitations much until this pass year. As my health declined so has my energy level. I used to be sleeping constantly! Now I thankfully am able to sleep less and function more but my energy is not doing well either. Yes I still push myself and try and function but it is hard at times. I want to keep going and do what I can because I don't want to let my body just go to waste I want to keep the muscles I have working! So tomorrow I probably will try the elevator because my body just isn't liking me so much!

My surgeon wasn't pleased with how my incision is healing and personally I wasn't either! He ended up cutting me again so this time I will hopefully heal properly. We go back in two weeks for him to check me out again(along with Tyler) At that point we should hopefully schedule my PEJ change so I can get a button! I was supposed to originally get a button but they didn't have my size in stock at the time of surgery. I was NOT happy when I woke up. He didn't want to place the tube while I was awake over in just the clinic and he wants it done at the main hospital in the OR so it looks like we will possibly be having a surgery planned eventually! It won't be anything major just a tube swap!

PS: I am doing feeds!! They are running anywhere between 20-25ccs an hour for 20ish hours a day sometimes less but no less than 16 hours a day! It's progress! So happy to be able to run feeds and I hope I am able to stay running them and even get up to a faster rate eventually!
First Day of Junior Year

Wednesday, August 6, 2014

Gastroparesis Awareness Month

August is Gastroparesis Awareness Month! Gastroparesis is a form of Digestive Tract Paralysis(DTP). Gastroparesis literally means paralyzed stomach. It is a rare, and debilitating disease that causes the food you eat to sit in your stomach for hours in some cases even days. This causes nausea, pain, fullness, acid reflux, no appetite, and indigestion.
  • Some interesting facts about Gastroparesis.
  • Your Chances of getting Digestive Tract Paralysis are 1 in 25 but your chances of getting identity theft are only 1 in 200.
  • Gastroparesis has few treatment options with no cure.
  • 5 million Americans suffer from Gastroparesis.
  •  Gastroparesis symptoms often imitate other GI disorders making diagnosis difficult.
  • Tests used to diagnose Gastroparesis are: Gastric Emptying Scan, Endoscopy, Gastric Manometry, and Barium X-ray.
With Gastroparesis your body is literally starving itself. No matter how much you eat it all just sits there and doesn't move until you either vomit it up or your body decides to slowly move it out of there. The food doesn't digest so it can't break down the nutrition we need to live. Digestive Tract Paralysis feels like you have the stomach flu 24.7. It just does not go away! Those who have DTP battle nausea, vomiting, dehydration, weight loss, fatigue, malnutrition, and more.

This month I hope you educate those about Gastroparesis/Digestive Tract Paralysis. You never know how close to home it might hit! You can always say it won't happen to you but it could! Help us find a cure for this horrible disease so I can get my life back! Most of us survive of feeding tubes and iv nutrition to live. It isn't fair that this disease has taken the one simple thing from our lives...eating.

Tuesday, August 5, 2014

Growing Up Too Fast

Have you ever imagined what it's like to be sick as a teenager or even child? What if you had to grow up with doctors, hospitals, needles, and more? Let's just say life is different than the average. We probably spend more time in the hospital than we do at school or with friends. While we are young most kids learn the basics like how to read, learn their abcs, or tying our shoes. While sick kids learn how to pronunciate their rare disease correctly(which most adults can't even pronounce), learn the names of their medications, and what their doctors name is not what their classmate's name is! It just doesn't seem fair to me.

Kids who are sick grow up too fast. Suddenly we aren't worried about the little things we are worried fighting to survive. Most kids have dreams of growing up to be a fire fighter, police officer, or a princess but most of these kids you see in the hospital may not even have the chance to grow up and be something. Sadly that's the cruel reality. 30% of children with rare and genetic diseases will not live to their fifth birthday. These kids grow up as fighters and it makes them stronger than you could ever imagine. They have this willpower to survive and beat the odds. I think it's the most beautiful thing in the world.

Life is just different when you are sick. Not necessarily in a bad way but just in a weird sense of way. We don't always experience normal childhood events and could probably rattle off more medical information than you may know. We aren't normal. At least like I know in my sense I feel more mature and exposed than my classmates at school. I am just always around adults. I don't spend all my time at school. I spend my time at the hospital more often than not. Nurses and doctors become your real friends. They are obviously quite older than me. So now I've just naturally stuck with that.

It gets weird with those who are my age. They ask me something about my disease and I probably go off on this long medical education unit in which they have no clue what it means. I try and keep it simple but it's still over their heads a little. And their understanding on why I can't do something sucks! No I can not eat food or drink anything. Well could you have ginger ale (or insert other eating product here)? Of course I can't! And how about we talk about dating....I can't eat food. What is the number one thing people do for dates? Oh yeah dinner dates! You know were you eat food and have a conversation around the dinner table. While both complimenting on how amazing it is. Yeah I kinda have this thing where I can't eat food so...that's out of the question. Chronic illnesses brings it's challenges when it comes to growing up! We are just mentally older than them. I don't think it's necessarily a bad thing. In the end it only makes us stronger but it also sucks. Yeah it sucks a lot! You just don't feel the same as everyone and sadly a part of you just feels left out from everything that was supposed to happen. But you learn to live with it and move on because you realize this chronic illness is just gonna be there forever and you just have to make the best of it.