Imagine...Memoir Poem

Imagine...
A life filled with
hospitals,
doctors,
needles,
and pain.

Imagine...
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.

Imagine...
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?

Imagine...
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.

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

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.

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.

Fear

It's been a while since I have last posted almost two weeks actually. I just haven't had much to say. Things are moving right along here in our house. We have been trying to keep ourselves busy as summer is winding down to a close. So far our activities this summer have included the waterpark, bowling, movie watching, bike-riding, coloring, dancing in the rain, Carowinds, arts and crafts, preforming surgery on stuffed animals, and a few other things here and there. We went to SkyZone last week right after Tyler's appointment with our psychologist in the GI clinic! We saw some pretty cool friends in the waiting room who were also waiting for appointments and we all got to talk and hang out for quite some time. We even invited one of them to come to SkyZone with us where we had a blast!

We did have some issues with the employs who kept telling Tyler he was unable to jump with his backpack. Of course this made Tyler very upset as they were being quite rude about it. We even said he was connected to it showed him his tubes and was like there is psychically no way he can take it off! He does everything with his backpack even goes swimming! It has never stopped him before! Why should it now? The owners came over to talk to Mom and everything was sorted out but Tyler was crying his eyes out at this point and he was so upset that he couldn't jump. He was just completely unconsolable! It took us an extra 30 minutes to calm him down and he was in a bad mood the rest of the day. Although he did get to go jump with his backpack on it made him upset. We talked about it once we got home and he was angry but seemed better about the situation.

On this day we also tried the Strawberry Neocate Jr. formula. Which is a brand new flavor they unleashed. I have to admit it is much better than the other formula I have had to drink in the past  but it still sucks and I really don't want to drink it again! My Mom also made ice cream out of the formula and while Tyler loves it I think it is the worst thing ever! At first it was great but then comes that after taste which just made me want to puke! If you are able to drink Strawberry rather than the other flavors I do recommend! My least favorite flavor is Eo28 Splash Grape/Raisin that one was horrible! While the best flavor before strawberry came around was Vanilla.

My health has been great lately! I am gaining quite a bit of weight which isn't good at all because it is too much! We will be decreasing my calories in hopes it stops it and maybe I will be able to loose some of this extra weight which I have now gained. We worked some things out with my allergy appointment last week and we are trying to get me in to a new group of doctors so I hopefully can get what I need to help fix all these problems we are having!

Otherwise we are just waiting till surgery. Which brings on the actually topic of this post fear. Yes I am scared to get this surgery done. No I am not afraid of the surgery itself. That part is easy for me. I have had to have way too many surgeries already in the past year I am used to that part but what I never ever get used to is the recovery process. It changes every single time. My reactions to anesthesia get worse every time I am exposed. Premedicating really doesn't help. I wake up with a massive migraine thankfully we have seemed to get rid of my allergic reaction symptoms but I still wake up feeling awful. As you know I have a migraine that has lasted for almost two years now. I have not gotten a break and it's 24.7 constant always there. It sucks and being put under anesthesia makes it worse. I get so dehydrated despite the constant high amounts of IV fluids I receive daily, I sleep for days and weeks on end and get almost no relief with the most typical pain medications. I usually end up admitted just because I am so bad and the recovery process lasts just about a month! I know J-tube surgery will be hard in the first place and I'm really not sure what to except. I just know this is going to be hard and brutal on my body.

So yeah to put it that way I am very fearful. I am not the type of person who is scared easily or shows her emotions to people always but this time it's different. Everyone keeps telling me everything will be okay or everything will be good and I just keep shaking my head saying okay trying to believe them because I know what is going to happen. You can't lie to me. I've been here before. The unknown is what I'm afraid of. Not sure what to expect as you could say and it isn't like someone could tell me what is going to happen because everyone is different. Plus my reactions have never been the same it isn't like there is a pattern in a way that we can fix this somehow? I wish there was that would make things easier.

The definition of fear is the belief that something is going to cause pain. Which I do believe something will cause pain and I know what will cause pain. I mean the surgeon said in general the surgery is going to be painful there is no lie about that! I just hope everything goes okay with how I tolerate it afterwards. Emotionally it's exhausting to be in that much pain and just feeling so awful that you can't move or do anything but sleep. I want this to be as easy as possible but I know easy isn't how things work always. We can all believe that everything is going to go perfectly fine until it happens you can say that as often as you want but I don't know. Maybe I am a realist and I have just excepted the fact that this is going to happen and we all know I have reactions and we don't know how to fix them so it is just going to be there. I just don't know how to handle that. It is kinda like just waiting for something bad to happen because you know it's coming you just don't know when.

I feel like I am going on about nonsense now so I probably should stop. I don't even think I accomplished what I really wanted to with this post but oh well. We will deal with that another time. I will try and update as soon as possible after surgery. My surgery is gonna be at 10:30 on Thursday morning. I will be inpatient for a minimum of four days after that we don't know how long it will be just depends on how well I tolerate things but I want to be home as soon as possible!

My friend Michenna wanted me to share her RSD Awareness Video so here it is.... https://www.youtube.com/watch?v=7hIlXo7NNaM&feature=youtu.be Enjoy!

Also here are a few pictures I've taken over the past two weeks of some of the fun activities we've done!