Tuesday, December 31, 2013

My Breakfast Lunch and Dinner

Today I came across a photo on Instagram of diet pills. The hashtag was #mybreakfastlunchanddinner. It made me angry. I used the same hashtag in describing my TPN aka IV nutrition. This person also said food was not needed. It made me angry because food is needed. Food is needed to survive. Food is good and I would love to eat food if I could. However I can't because I have Gastroparesis and food allergies. It is not an option for me to eat or not. Yet, this person is taking food for granted as I would cry just to have one meal that is pain free. I don't see how it is worth it to use diet pills daily instead of eating. There are so many of us in the world who are unable to eat food. Fed by an IV or feeding tube. I'm not lucky because I am so skinny. I would rather be fat and happy than skinny and starving. I wonder if this person would think I'm lucky because I am fed into my heart and can't eat anything? Not able to gain weight having countless hospital stays, doctor appointments, and surgeries...yeah I'm lucky alright! Lucky to be sick and starving 24/7. Maybe I would see this differently if I wasn't sick. I'm jealous of someone who can eat REAL FOOD!! She chooses not to eat. On another not diet pills are extremely unhealthy and you are more than likely to gain back the weight you just recently lost by starving your body of nutrition and taking these pills. It almost seems unfair. Like can I trade places with her and eat all the food I want to if she doesn't want to eat? Gastroparesis is a disease that paralyzes the stomach. Food and liquids will sit in my stomach for hours and not move until I puke it up or my stomach decides to function slowly. Learn more here: gpact.org. Even into my intestines my digestive tract will not work properly. This is why I am giving TPN daily so I can survive and receive proper nutrition without becoming malnourished. Next time you think about skipping a meal or several and taking diet pills. Think of me and the thousands of people out there living with chronic GI conditions that give our body the inability to take in food properly. You never know how lucky you are to eat food unless you are unable to.

God Won't Give You more Than You Can Handle.

"Never get mad at God for what He can put you through."

This year has tested my faith more than I will ever know. 2013 was definitely not my friend. It included several surgeries, hospital stays, and doctor appointments. I've been struggling a lot with everything that has been going on. I'll admit it is hard to trust God to take care of everything when it seems that nothing has ever gone right. It is something far beyond my understanding or anyone else's understanding. No matter what happens today, tomorrow or the next day. God's got this. He will save the day. My struggle is what makes me special and I am lucky God chose me out of everyone to live this fight everyday. No I don't like it nor am I happy about having to deal with this. Maybe he is just building up my strength for something even better. Something that is amazing and far beyond what I could ever expect. Look at the positives because of Him I will be okay and I just have to keep telling myself that. This fight is a battle that is so hard yet it is beautiful. My life is beautiful because it is turning out just the way God planned it to and he wants me to be thankful for all the opportunities in my life. Life is hard, yet it is so beautiful. <3

Friday, December 27, 2013

Goodbye 2013, Hello 2014

2013 has brought me trials. Ups and downs, good things and bad things, and also miracles.
The Good Things
-I started at a new school and love it!
-Took a mission trip to the beach
-Made some amazing new friends
-Tyler's surgeon was able to reverse his ostomy and reconnect his GI tract
-I was confirmed in May
-I gained two more safe foods making our total three
-Went to the ACC Championship game!
-Was in our Children's Hospital Radiothon

The Bad Things
-I was diagnosed with Gastroparesis in September
-I need a central line to live and I'm TPN dependent.
-I am NPO
-Had six surgeries
-Lost a lot of my independence.
-Failed nearly 50 food trials
-Missed half a semester of school

Although life has not been easy this past year I've been happy with how things are going. I've missed out on a lot but also had some amazing opportunities despite my diseases. I am blessed beyond compare to have so many people's support in my life. I am praying that 2014 is a much better year for me health wise and I can't wait to see what life has in store for me next!


I Believe in Superheroes

I believe in superheroes. My brother wears his superhero cape and mask around the hospital as it shows his strength and his courage as he fights this battle against Mitochondrial Disease. It’s a disease with no treatment, no surgery, no magic pill, and no cure. My brother, Tyler and I both have several rare, incurable diseases and this has brought a bond between us like no other.
I was twelve on April 16th, 2011 when Tyler had a seizure in my arms. I remember screaming for help, thinking it was my fault, collapsing on the ground crying with my younger brother, not knowing what was happening or if he would survive the night. Tyler turned blue within a matter of minutes and ended up having two seizures that night. Soon later he was diagnosed with Mitochondrial Disease and he is still showing the world what amazing things he can accomplish despite the obstacles that are in his way.
Since then Tyler has cheated death twice more making our total five times. Which is way too high for an eight-year-old boy! I will admit the facts and statistics scare me because I know I will probably loose my best friend but I pray every day a miracle treatment or cure will come. I just hope it comes and saves my superhero before it’s too late.
Over the weekend Tyler and I were talking while I was pushing IV medication through his Arteriovenous fistula and several things he said reminded me of the past. We were just having a normal conversation about something funny and then he said he had something to say. I listened and he broke my heart. I hate it when he says he feels lonely and scared. He told me how thankful he is to have me so he doesn’t feel so lonely because I understand the pain, the tears, the tubes, the wires, and the hurt. I started to cry. It’s not fair that an eight-year-old boy says he wants to rip his tubes out because it hurts too much. Sadly, this is the reality of Mitochondrial Disease.
Through everything that has happened we are both somehow alive today. I think it is because we have each other. Being sick has made us best friends ever since day one. I am proud to be his sister because he has shown me how to live my life a little differently than most do. Before I finished giving him his medicine the last thing he told me was “But life is just life, you know? Whatever happens, happens.” 

Superheroes are supposed to sacrifice things in their life for others and that is exactly what Tyler does. Everyday Tyler could only care about himself and how much pain he is in. Instead, he puts others first including myself. It is just something we have always done since the beginning. Having two sick kids in our family is hard enough on our parents and siblings. They need a break just as much as we do. Even though Tyler is hurting so bad he takes the time to worry about them before he worries about himself. Tyler defines what a true hero is courageous, bold, and a fighter.



Friday, December 6, 2013

Independence

At fifteen years old most normal teenagers take care of themselves,  make meals, go to bed by themselves, shower by themselves, and manage their everyday needs however that isn't the case for me. My disease has taken away my ability to play sports, go to school everyday like a "typical" teenager, to drive, to shower alone, to get dressed without help at times, to eat or drink, sometimes I am physically drained to where I can't even give myself my own medication, and to care for my daily needs. Most doctors and people don't realize that a chronic illness is more than just being sick and feeling ill. It's the emotional aspect of the disease. How you manage and cope daily. Do you think you could have all of your independence taken away from you at once? How about loosing your independence at fifteen and needing your mother to help you shower daily? All of this just ripped away from you at once...sometimes I think I'm handling it pretty well other times not so much. It is really hard I will tell you that. I always feel people forget I am only fifteen years old and trying to manage a "normal" life despite the conditions. You have nights where all you do is sit in your room and cry and cry and cry you don't stop, other times asking God why he chose YOU, and just being angry at everyone because you aren't "normal" in a world that is so hatred in those who are different. I start the day the war begins another day where I have that constant reminder I can't do this or that because I am sick. At the moment I am not entirely happy with the situation I'm in. I don't think anyone would be happy if they were me either. However this battle has only started and we have a long way to go to beat this! Maybe, my disease can stop me from doing all the things I want in my life but it can't stop me from doing the one thing I will always do. I will Never Loose Hope...and that is a guarantee.

Friday, November 29, 2013

Discharge

After a week in the hospital I will be heading home! I was admitted last Thursday for my migraines because they got worse after my surgery. We started a new treatment which failed. We have tried several other medications including pain meds and nothing has worked so for now I will be going home because they cannot do anything else for me here. The doctors have sort of run out of options and ideas on what to do next. I will be headed to Atlanta shortly to see a pain specialist, Nationwide Children's hospital to go see a neurologist there also their GI team, and an adult neurologist local will try Botox injections to see if that can help. For now that's really all our plan is because we don't know what to do. It has been an extremely emotional hospital stay that has definitely taken a toll on me. I hope being out of the hospital and trying to manage at home will help me with all this. About to go home! Good bye!!!

Monday, November 18, 2013

Hickman line

I haven't updated much in a while but today I am having surgery to remove my picc line and place a Hickman line. Please pray for me. Thank you:)

Friday, October 25, 2013

Life

but life is just life, you know? whatever happens, happens. Tyler told me this last night in the midst of a conversation we were having. It kind of shocked me when he said it. I mean I was already crying and boom. He just acts too old for his age sometimes. He knows too much because of what this disease has put him through and I hate every minute of it. The same disease that has robbed him of his childhood, hasn't let him be a kid, or let him go to school. He told me he likes having someone just like him(referring to me) because sometimes he feels likes his alone and the only one. He isn't like everyone else and as he is getting older he is realizing that. We carried on the conversation while I was doing IV medications and talked about some other things. I feel like I just have to promise my baby boy he will be okay. Everything will be okay. I know it will. Don't worry Tyler it won't be like this anymore. I know that. I love you okay? I promised him one thing last night. I promised him one day we won't be sick anymore. One day we won't be sick. We won't need lines anymore. We just won't be sick. I love you I said just holding him in my lap hugging him. I didn't even know what to say to him anymore. The last thing I say was. You are so strong buddy. Just keep fighting. I'm always here if you want to talk about anything and I left his room. I don't know what to say anymore. So much he said last night. Just so much that I wish he could realize. Or understand so it wasn't so hard  but to be honest, I'm not even sure I understand any part of what is going on right now. He keeps my head up high on some of the worst days. We will survive all of this. The entire conversation we had last night will always be a secret kept between the two of us and it will always be one of the most special moments in my life.

but life is just life, you know? whatever happens, happens.

Friday, October 18, 2013

I'm Feeling Eh

I have been feeling really bad this week and trying to keep up with my school work is near impossible. I did however finish "The Fault in Our Stars" by John Green which is an amazing book!! We started daily IV fluids because last week we soon realized I don't have enough fluid in my TPN so I became dehydrated we are now doing daily boluses of fluids and it is helping to keep my blood pressure stable as well. I'm slowly coming off of one migraine medication and slowly increasing another. IV medications around the clock still waiting to get into Nationwide. I have to go back to doing allergy shots every week because I missed several weeks from being in the hospital. That's really just the update for now because there isn't much we can do anymore. Spirt week is next week at the high school and homecoming is on Friday. I got a 98% in Spanish for this 9 weeks! It's amazing because of how much I have missed my other two classes I have a few assignments that need to be made up so they can't input any grades into the system yet for me but hopefully those grades will be as good as my Spanish grade!

Sunday, October 6, 2013

Home

Home... <3

I've been home for a little more than a week now and it's the bes thing ever. Not being able to go to school for over a month, not being able to sleep in my own bed at night, being woken up every morning bright and early just for blood draws, vital checks, etc. Adjusting to life at home with a central line is difficult at first but it's starting to get easier. The routine of things are starting to get normal. Hooking up to TPN at 4pm everyday so I can be off before school starts. We've added new medications so I have to remember when to take those. Showering with a central line is miserable having to tape it up and seal it three times around just to make sure it doesn't leak. Weekly dressing changes and blood draws. Life is moving on here though it's our new normal and will adjust anyway we need to. Having two kids on IV medications, TPN, and the all of the other medications medical supplies isn't easy but somehow we are making it work. I see neurology tomorrow and a new doctor on Friday. Depending on how things go with neurology we may throw a GI appointment in the mix for this week. School is going great! I'm having so much fun with my friends in class. I have an insane amount of make-up work and it's so hard to get it all done but I'm trying.

There are definitely a lot of things I'm upset about right now. Until I get this central line out I can't play any sports. meaning no soccer...Soccer was the one thing that made me feel normal. I could play without worrying about anything else. Now I don't have that. I understand that I have to have the central line for nutrition but I wish it wasn't like that. I would be happy if my stomach started working again! Wouldn't that be nice? It just sucks because right now its the only way to keep me alive and healthy.

Sunday, September 15, 2013

Mitochondrial Disease Awareness Week!

Today kicks off the start of Mitochondrial Disease Awareness Week 2013. Just the perfect time to make everyone aware of the awful disease that has robbed children and adults of so much. Did you know the every thirty minutes a child is born who will develop mitochondrial disease by age 10? That is 4,000 children each year in the US alone. This makes Mitochondrial Disease just as common as childhood cancer. I could sit here and tell you all these facts about mito but it would mean nothing unless you experience it first hand. You have hardly any energy to even get out of bed every morning. Some kids can't even tell their moms I love you just one time before they are taken away from their mother's arms. No energy to breathe, no energy eat, no energy to walk, no energy to talk, and sometimes there is just no energy to do anything but lie in bed all day but do anything but sleep. It is the harsh reality for several families trying to cope with this awful disease. Tyler's body doesn't have the energy to walk community distances so most of the time he relies on a wheelchair to go from place to place. He gets his nutrition through his AV fistula since his gut shutdown because it could just no longer function anymore. Probably because he just doesn't have the energy to make it work anymore. The fact that 98% of children die before age 20 who are diagnosed with this disease is just horrible. There is no known treatment or even a cure. Every night you just lay in your bed and pray for a miracle. Something that will come along to just fix everything and make it all better again. The body slowly deteriorates and all you can do is watch. There are medications to try and slow the process you take vitamins and supplements. You treat the problems as they arise. That's all you can do. Most kids die because they are even diagnosed just because of lack of awareness. 90% of children diagnosed before age 5 don't make it to age 13. Girls have a better chance of surviving than boys do. What if this was your child? Would you want them to have those odds? We become so close to other families who have children with mitochondrial disease. You fight along side with them you loose some battles and you win some. Mito you suck! you are awful disease and everyone hates you one day you will be gone because we will find a cure. We are supporting the fighters, adoring the survivors, honoring the taken, and never, ever giving up HOPE because sometimes hope is all we have left.

Wednesday, September 11, 2013

You're Too Young To Be Sick

Surgery is scheduled for tomorrow morning and I couldn't be more ready. Super nervous but I know this is the best plan to try and get me feeling better.

As invisible illness awareness week continues I am going to try and keep posting a little more each day about what it is like to live with an invisible illness so here we go! I am only 15 and I was sick when I was little but it wasn't anything major. I mean I just had lung problems and food allergies but it progressively got worse throughout elementary school and middle school. Tyler he was born extremely sick requiring surgery at thirty-six hours old. Sometimes I feel like I'm a teenage girl trapped inside of a 80 year old's body and let me tell you it is not fun at all. All you want to do everyday is lay in bed because you have no energy because it just hurts so bad. You feel like breaking down and crying because you can't do everything on your own anymore. You've lost your independence because you can no longer do tasks that were once so simple but now you are sick they are so hard to do. I have friends who are only in there 20s living in nursing homes.

Yet people always tell me "but you're too young to be sick" I know I am too young to be sick. I hate every minute of it. I want to be a normal teenager and deal with all the stuff that all the other girls my age have to deal with but I usually don't. I mean yes I do get to do a few of the things that all my friends do but I have extra challenges in my way, extra road blocks that stop me from doing what I want to do. I don't feel well enough to go out to enjoy a movie with my friends it always ends up feeling that way. I am thankful my illness doesn't stop me from doing what I want to do because I know it doesn't. I can do anything my friends can do. The only problem is that sometimes I am too sick to do those things.

As a parent you want to keep your kids away from any harm or danger. Anything that could hurt them all you want to do is keep them safe but what if you couldn't keep them from hurting? What if they were hurting so bad every single day? My body harms itself on its own. Going into surgery every single time that comes with it's own risks it never does get easier for a parent to say good bye to their child as the get wheeled off into the operating room.

Anyone can get sick it doesn't matter how old you are. There is childhood cancer and cancer in general.   The same goes for any disease. It sucks that kids have to go through it too. I'm sure you have seen how hard it is for an adult to go through their life being chronically ill. It's so hard to imagine being a kid and being sick. I could tell you it's basically hell. The weight is too much to bear at times. It's not fair for any child to have to deal with any disease. Kids can get sick sadly it's the truth! Chronic illnesses don't mess around and they will attack anyone they feel like it. Just remember that.

I'm having a bad night. Lots of new treatment options and discussions health wise and it's overwhelming. I just want to get home from the hospital all ready, please pray for me and all my friends. 

Tuesday, September 10, 2013

Invisible Illness Awareness Week

Yesterday was the kick-off of invisible illness awareness week! I wasn't able to post because I had an endoscopy yesterday and I am STILL in the hospital but I decided I feel decent enough to post today. So here it goes! This is my life with an invisible illness. This is my reality.

Have you ever gotten the flu or have been so sick you just feel like you can't even do anything? That's how I feel EVERYDAY. I look like your typical teenage girl. I go to church every Sunday and hang out with the best youth group in the world, I play soccer, I go to school everyday, I love music, and I would probably start a conversation with anyone I meet. Little would you know I have an invisible illness that effects my life on a daily basis. I am constantly in pain, fed through a feeding tube, and spend countless hours in doctors offices and hospitals hooked up to tubes and wires all while trying to keep a brave face and moving on like everything is okay. Looks can be deceiving I don't look sick and that is the beauty of it all! You can't see my insides. If you looked at my body from the inside out you would see a completely different story. The best way to describe it is like picturing World War II in your head just for a few minutes...that is what is going on in my body right now my body is taking a beating except there are no sides it's just one side my body beating itself up. Autoimmune disorders suck!!

I have been through hell and back with these illnesses. You always get those comments "but you don't look sick" people think I'm lying and it's disgusting. It's what people don't see that always gets them. They don't see the countless IVs, blood draws, needle pokes, doctor appointments, hospital stays, holidays in the hospitals, birthdays without cake, surgeries, procedures, medications, treatments, CT scans, and all the other medical stuff/supplies that we have to deal with daily.  Would you like to come live in my world for a day? It's full of pain, nausea vomiting, medication, and a feeding tubes. I don't think you would want to it hurt so much inside and there really isn't much they can do about it.

Being sick so much has brought me up to deal with the pain. I now I have a pretty high pain tolerance and I can go on caring around like everything is all fine with a smile on my face everyday and you have no idea how bad my pain is. Why I don't want you to know because all you would do it pity me because I don't need it I can do anything you can do I just have a few extra things I need to do. Well...I can't eat but you get my point. If there was one thing I wish people would stop saying to those with a chronic illness it would be "stop complaining" or "but it could always be worse." I think I have ever right to complain I'm in pain 24/7 you wouldn't be too happy if you were in pain either. No you complain about how you can't go to school because I have this little cold. All while I push myself to go to school every morning. This last one right here is the one that makes me angry "but it could always be worse." Personally I don't see how things could get any worse. I mean maybe they can but just because someone else is hurting worse than me doesn't mean my problems don't matter because mine do just as much as the next guy. Basically by saying that it could be worse you are saying well what you aren't going through isn't too bad so you will be okay. I am still suffering too and I wish people would see that constant pain that I feel. I'm sorry if someone has it worse off than me but I am still having a hard time too.

Please remember not all disabilities are visible you can't see what I battle on a daily basis you only hear stories. You can't see my insides you are not a medical genius who has everything figured out in this world because if you did then I would be cured and I wouldn't be sick and I would be like worshiping you  right now for curing me. Anyway Happy Invisible Illness Awareness Week! Remember Mitochondrial Disease Awareness Week is next week!!! You must be wearing green!!!!!! :D

Thursday, September 5, 2013

Hospital Life

Laying in a hospital bed attached to tubes and wires. I think that's how most people like to spend their Thursday nights right? I got admitted on Tuesday night. First I wasn't able to go back to school on Tuesday morning and we waited for a call back from GI we went for IV fluids and we would just chat with GI. We grabbed labs just to be safe and sure enough we got a call that night by the on-call gi that I had to be admitted because I was extremely dehydrated and all my other labs where all over the place. Not very good at all. We didn't expect to be admitted till Wednesday.  Finally rehydrated my labs still aren't stable. Feeds just got started(it's a Joey pump) For all those tube feeders out there you know my pain. My weight has taken a gigantic drop so no one is happy about that at all. It is gonna take a long time to get back up there again sadly. They are trying to manage my pain finally!! I'm happy about that! It's not going so well but they are at least trying to get my migraine under control. Tomorrow I will have a gastric emptying scan done to see if my stomach functions and empties properly hopefully all will go well. Tyler is coming down to the hospital too tomorrow for a visit! Everyone here is just referring  me as "Tyler's sister" Yeah I'm stuck here this time not Tyler sorry. I'm just happy to not be NPO tonight so I can have some ice chips.

Friday, August 23, 2013

One Simple Word

Food. It's a simple word that means so much. To me food means something that I can't have. It's something I don't think I will ever be able to have unless a cure comes soon. In the dictionary it says food is any substance that sustains your life but food makes me sick it doesn't sustain my life. I have to be deprived of food just to be healthy. That sounds wrong on so many levels but it's true. Food brings horrendous pain and suffering. I'm on a strict no food diet it means I have to have this special formula and I can't have any food at all. I'm feed through a feeding tube in my intestines. Most people can't stick to a diet let alone no food. For a person on a diet trying to loose weight they can cheat here and there and be okay. However for me that is a different story. Absolutely no cheating. If I cheat I will be on the floor literally screaming because the pain hurts so bad. Cheating brings, pain, sickness, vomiting, extra medicine, and a day or several days in bed. The same thing happens with food fails. If I am doing a food trial and eat a food then I start to have symptoms I've lost the food and I'm in so much pain. I'll never get that food back that I failed. Yes I will gain some safe foods along the way but I'll also loose some foods and that does not get any easier. You are basically mourning the loss of a food. That's the best way to put it. It sounds stupid but what if you were told to stay away from food after you've been trailing that food for six weeks?
Food is everywhere. Our society revolves around food. Just think about it for a minute. Social media, TV shows, commercials, parties, Thanksgiving, Halloween, and even your morning coffee. I understand that most people can however there are those of us who can't. Eat for me eat all the food you want. Ice cream, cake, pizza, french fries, anything that you want to eat. Eat it without a care in the world. I can't wait till one day when I can do that. So please don't ever take eating food for granted there are me and thousand of others who would do anything to take one bite of food without having to suffer the consequences.

To The Parents of Chronically Ill Kids

Last night was a bad night. Tyler's fistula line had to be pulled and my parents haven't been instructed how to place on yet. My Dad used to be an EMT so he has placed IVs and Mom has been taught how to but it was a crash course until they could do the real training. So my parents poked Tyler three times and were able to access it. They didn't have to go to the ER. Tyler was screaming and he shed a few tears. I thought how hard the had to be on my parents. They had to place an IV on their own child. So this is for the parents of any child who has a chronic illness. Thank you.

To the parents of chronically ill kids:

You guys are superheros. No one on this earth could do a better job than you do even when you feel like you aren't doing the right thing. I know you feel helpless like you can't do anything. All you can say is "it will be okay" and "it will be over soon" and "everything will be better" and a cure will come." Don't give up. Most people as a parent could never watch their child go through countless medical procedures day in and day out. Countless pills, treatments, hospital stay, doctors visits. All of that just to try and keep them healthy. You watch them hurt, scream in pain, and cry. You know you can't do anything about it but you will always be there for them. You won't give up you want that cure to come now. You could be like my parents and sit there holding their child in their lap crying because they can no longer eat food anymore. You hold them down while a nurse tries to place an IV. Could you mentally even think about putting an IV in your own child? Mix their medications, make tube feeds, draw blood, make IV nutrition. It is scary to think about. Every night you pray for a miracle, a cure, and just for help to make it through the day. You were thrown into this all at once and you are doing the best you can. I know sometimes you don't think it is good enough but you are trying and that's all we can ask for. No parent should ever have to watch their child suffer like this. Sick kid parents go through hell more than any one should ever in a lifetime.  It's hard I know. I can't lie I watch my parents everyday deal with me and my brother. You are doing the best you can. It's hard but you will make it through this.

Thank you for everything you do. You guys are my heros <3

Wednesday, August 21, 2013

Back to School

So this week on Monday I started school! This was my first year going back after doing online school for 9th grade. I was super nervous for obvious reasons. I was nervous about what everyone would think considering none of them know I'm sick. Only a few people in the school do but they aren't in any of my classes. I have been connected to feeds everyday and my pump hasn't beeped once. It's a record!! I haven't been tolerating feeds so I have to stay continuous. I have been having a blast! My first block is chemistry and I'm the only 10th grader in the entire class. Everyone else is older than me. Second block I have a class with some people I know so that made things a lot better. I'm not a loner! Third block I know a few people but not anyone I'm friends with. So far everything has gone great with my medical stuff. Today someone ate something they shouldn't have in class near me so I told the teacher and she said she'll take care of it. So hopefully tomorrow the problem is fixed. Then I have early dismissal and get to go home at 1:15. Which is good because I'm exhausted by that point. Keeping up with homework is hard because I just don't have the energy to do it. Plus my headaches have gotten worse so it is so hard to focus and concentrate. Neurology started me on a new medication that I will take tonight so we will see how that helps. I wish I could get rid of them once and for all! Besides all my medical drama school is great and I'm happy. It's nice to get away from all the bad stuff happening in life right now and focus on school. Keeping me busy so I don't have to worry about it at that moment because I just forget. Life is great! Let's just hope things start going smoothly with my medical drama and everything gets taken care of.

Sunday, August 18, 2013

Where to Begin

I'm not really sure where to begin with all this. So I'm just gonna talk. On Tuesday Tyler was admitted to the hospital due to yet another central line infection. We have made lots of big changes since then. If you remember Tyler's last hospital stay he had a vascular surgery done. The surgery was for the av fistula. After we got back from the beach trip Tyler had his appointment and they were going to wait another month to try and access the fistula. Well when Tyler was admitted they really didn't have a choice about what to do. They decided to access the fistula and they got the IV in place and ready to go. They were able to run fluids, iv medications, and TPN off the fistula. So it was decided that they will pull the central line since it is infected. That was done on Friday and he was sent home on Saturday. It was really iffy whether he was able to come home. They don't have much support set up for the fistula because Tyler was the second pediatric patient in that hospital to get one for daily use but he's home and on IV antibiotics. They did a repeat echo in the hospital to check out the endocarditis whether it was still there, got smaller, or if it was bigger. We didn't get the best news. The spot on Tyler's heart got bigger. So there's still an infection. He will be on IV antibiotics for 8+ weeks until the infection is killed and the spot is gone. This hospital stay was kind of a shock and lots of changes so it's been hard. Everyone is just trying to deal with it in there own ways. I haven't been really happy lately ever since my migraines have gotten really bad. My head still hasn't stopped hurting. I finally was able to increase the dose to 50mgs and that hasn't made much of a difference either. I start school tomorrow so I really want these migraines to go away. I'm still not able to focus and concentrate enough to read a book. So school is definitely gonna be hard to handle. I'm also not tolerating feeds. At most each day I get in 32oz on average. That is only half of what I need. My rate is 160mls an hour and sometimesI have to decrease that because it gets to be too much. So I will be on my pump at school until I can get a better rate. I'm kinda nervous about how people will react to that. It really doesn't bother me about how people handle me being sick and all but right now it kind of does just because I've had so many issues at school with being sick and all. School brings back so much anxiety for me. I'm not really sure what to think. Go with the flow I guess. On Thursday we had my meeting at the high school and it went well. I don't think we will have that many problems this year which made me feel more comfortable about going. We also got my lunch changed to third lunch so I don't have to sit through lunch and I can leave at 1:15. I think that's the best thing in the world. For me watching people eat, smelling food, etc is pure torture. I want to eat so bad but I know I can't because  I will get so sick. It's just not worth it.
Lately it just feels like my entire world is crashing down on me. I have so much to deal with and sort through right now. I'm so stressed about everything and it's beginning to get to that point where it's too much to handle. No matter how much I try to make things better or help it's never works out. I had so much responsibility when Tyler was in the hospital. I had to watch my brother Brycen almost every day. I cleaned up after dinner because I was home alone with him. I cleaned the house and ended up getting yelled at for that because I didn't put something away right. I cleaned the entire house by myself and no one seemed to realize that I did it. Yet they realize something is wrong and they complain about it. I didn't bother to say it was my fault. I was probably yelled at because everyone was stressed out but I still don't like it when I really didn't do anything wrong. I can't take it anymore. I really just want a break that's all I want. I want everything to get better and I don't see why life shouldn't get better. In my opinion on I don't see things getting better to the point where I want them too. I want mito to stop attacking my brother, I want to eat real food without getting sick, and I just want everyone to be happy again and not so stressed. Every time things do look like they will get better just a little better my entire world comes crashing down on me. I'd really like a break from reality. Life sucks right now. I will be the first one to tell you that. No one can lie and tell you it doesn't because it does. I really do love my life it just gets too hard sometimes. It's overwhelming. You feel like your drowning and you can't escape. Right now I just need to breathe. I need too sort through things and grab a hold of life again. I'm not depressed at all I've just had enough. I can only handle so much. People tend to forget I'm only 15 and everything I've had to deal with in my life has been so hard most adults have never gone through what I'm going through right now. I've stayed strong only because I've had to. For the sake of everyone else you need to work out life and in the end when it comes down to it. Everything will be so good again. No one will ever understand how I feel because they aren't me. I'm the only one who can deal with how I feel right now. Earlier this week someone asked me if Tyler was dying. I was so upset. This is one thing I've really wished would never have to come up. Yes, Mitochondrial disease is a degenerative disease.  Tyler will get worse over time and most kids diagnosed before age 5 don't make it to there teenage years. Those diagnosed before age 10 more than likely won't make it to 20. We have hope that Tyler will be here until he grows old. I don't look at Tyler and think oh he's dying. No I look at my brother and I see that he is the happiest 8 year old boy on this planet. He has a family who loves him, and he gets to experience the world. He appreciates life more than anyone I ever know. It's the little things that count and I want to make sure that he has everything he's ever wanted because he deserves it more than anything else. He's been through hell and back and we aren't stoping now. So please don't ask me if Tyler's dying. If you want to be a pessimist we are all dying. Each and everyday we all get one step closer to death. You don't know whether tomorrow will be your last day, or will you grow old and live a full life. So yes technically Tyler is dying and so are you but you need to be optimistic about things. Choose to look on the bright side right now if you are reading this you're alive and that is something to be thankful for. Life every day like it's your last and I promise you that you will have the best life ever.

Friday, August 9, 2013

Beach Mission Trip

I was able to get to enjoy the beach trip! It was an amazing experience. I wasn't feeling very well but I still decided to go. It was nice to forget about life and everything else for a little while. Care free with some of the greatest friends around. The first night we walked on the beach and shouted out Happy Shark Week. Jesus Loves You! It was awesome to see how many people seemed appreciated that we told them that. Of course the fact that it being shark week at the beach probably ins't the best thing in the world for some people but we loved it. The next day we went to the Soup Kitchen. Some worked at the soup kitchen and others remolded a building for counseling center. We had to paint and put down carpeting. After we hung out at the beach for the rest of the day. On Tuesday we went to Cypress Gardens and a water park. We all loved the water park I think it was the highlight of everyone's day. It was a little weird when everyone was staring at my stomach. I know most weren't trying to be mean about it but some people weird and it really bugged me. That night we went on the ghost tour! We walked around Charleston learning about ghosts. I was super tired. Wednesday we did communion on the beach and went home after touring a few churches. I am happy to be home. My migraines are still there and are really annoying me. We are increasing my amitriptyline to 25mgs this week then 50mgs next week. (you have to slowly increase the dose) I hope it helps. I'm still not tolerating feeds well. Even two ounces in my stomach hurts a lot. I have to try formula tonight so we will see how it goes I guess. I've made the decision to go back to school this year. I'm really nervous but I'm sure I'll be okay. We decided on early dismissal because I'm not sure I would be able to handle a full day of school. That's pretty much it for now. See ya!

Thursday, July 11, 2013

What's Up?

Well...I haven't really updated about Tyler's admission. They found out he has endocarditis of inflammation of the heart it is believed to be caused by the infected. He will be treated with antibiotics for 4-8+ weeks. They rescheduled his surgery for Tuesday. So on Tuesday he had surgery. They were able to do the AV fistulae and the broviac placement with no complications. His seventh major surgery was a success. After the surgery he was in pain, miserable, and in a mood. They realized he felt so bad because while he was in the OR he wasn't able to get his IV medications. Once they got him that he was better. They also gave him IV pain medication and covered his incision site. Out of sight out of mind right? Hopefully he will get to come home today. He wasn't supposed to be home till Friday but he is doing well. His supplies are here and should be home later tonight. I failed corn two days ago but I am still feeling the side effects. It should get better with time unless I am failing another food that I am eating. I have an appointment with the ENT next week. We will see what he says about my sinuses. I also have to get allergy shots and go to the orthodontist. I have some awesome news I am super excited about! We will be having a local Hope on the Horizon Walk. This walk is sponsored by APFED. We will be collecting money for the walk to raise funds for research for eosinophilic disorders. I am super excited! The last walk I raised 1200$ dollars. This year I want to raise 1500$ dollars. The walk is August 31st. Our team name is "The Food Fighters" if you are local and want to come walk with us please do! You can talk to my Mom or me about it. :) I am super excited and we've already started talking about everything and we just found out about the walk on Tuesday. Once Mom prints off the sheets I can go out and start collecting money. That's about it. I'm not sure if I am going to trail anything new or even what I would trial if I do trial something.

Wednesday, July 10, 2013

Allergies

I have an allergy -- well actually quite a few
It ruins my life
Cuz' I have one too many!

When I eat something I am allergic to
my lips start tingling. I feel quite odd!
My brain is jingling.

My chest is a concrete block.
I struggle to breathe
and wheeze with every breath.

There is a stone in my throat.
I cough and hack and sneeze...
Ah Choo!

I touch my face and get quite a fright.
My face is a puffer fish!
It's all puffy and bright.

My skin is itchy and red.
I have hives all over
from head to toe.

It's odd to know
that when I decide to eat these evil sweet treats,
it hurts very very deep.

I dream of a meal...
A meal with
no questions, no doubt, no worries, nor fear.

Can someone please help me?

Thursday, June 27, 2013

Invisible Illnesses

"You can't see it, but I can feel it. You don't understand it, but I deal with it on a daily basis. You either think I'm lazy or you feel sorry for me, but I am stronger than you'll ever know. I fight everyday. I don't want your sympathy. I just want to be treated with respect and I want to feel better. I've forgotten what that feels like."

The whole point of an invisible illness is that you can't see it that's the beauty of it all. I look just like you my insides just aren't like yours. Some people think well if you can't see things it isn't real but it is there and it is real. It is kinda like oxygen it is there people just don't see it. Yet everyone says it is there because it is there. It is the same way with an invisible illness.

We have to fight everyday whether it is to get out of bed, participate in normal activities  and push through the pain. It isn't that we are lazy trust me. I want to do everything that you can do in everyday life it is just that sometimes I can't because I'm not feeling well or it hurts too much. We have to be strong and push things aside just so we can function like you everyday.

I don't want everyone to feel sorry for me because I am not sorry for myself. I tell people I have a rare disease and the number one reply is "I am sorry." It isn't their fault that I am sick. My Mom and Dad aren't angry. I'm not angry. No one is angry that I have an invisible illness. It just happens and it is not a single person's fault that this happened. Treat me the way you would want to feel if you were me. I am a normal kid. I just have a few extra things that I have to do and carry with me. Like I can't eat food, I have a feeding tube, I carry around an epi-pen and benadryl everywhere I go in case of an allergic shock. It is those type of things that I have to do that most people don't. I could think of a hundred more things It does make me feel different from everyone else but I don't feel much different. I just don't eat.

I want to feel better! I would trade anything for one day without having to worry about being sick. I could get so much done it wouldn't be funny. I could eat!! Cake, ice cream, pizza, steak, and the list goes on and on.  The first time I got my feeding tube I started feeling normal. I told my Mom wow! This is what a normal person feels like! It's amazing! She just laughed but I was serious. Then I started getting sinus infections and headaches and I haven't gotten better since then. So now I have again forgotten what it is like to be normal. It takes a lot out of you being sick we can't be normal even though we try.

I forgot who wrote that quote up above. I think I found it online somewhere but there was no author behind the quote so I guess the person is anonymus.

Anyway, I have been doing okay. I'm feeling decent besides my headaches. My stomach has been hurting and I haven't eaten corn in 48 hours so I know it isn't the corn unless it is a delayed reaction. I've been so frustrated lately though. Just upset, worried, and sad about everything. I just want to eat, I want to do this and that and everything else but I can't. I'm okay even though I'm not okay. I just haven't worked all that out yet.



Wednesday, June 19, 2013

It's My Birthday!

So I have an update: I am still eating corn and it is going decent. My next trial is a special bread. Not sure what it is called. I have to see if I like the taste. If I don't like it I don't know what I will try and eat next. There isn't anything that I want to trial. On Tuesday, we went to the dollar theater in the morning with friends. In the afternoon we had dentist appointments for all four of us kids. Let me tell you I like our dentist. They care about us a lot. Since Tyler and I have allergies we aren't allowed to have the normal stuff that the other kids get. Last time they were safe but this time the ingredients changed and now they contain a milk protein  So Tyler and I couldn't use the fluoride. Before we even got started they made sure it was safe for us to get our teeth cleaned. Obviously it wasn't but we got our teeth cleaned without the fluoride. Tyler also has to bring his tooth paste to the dentist because he cannot do the tooth paste they use. I however can. After the dentist we signed up for soccer. I was wearing my eosinophil shirt with all the pronunciation. That no one who is normal can seem to read. She stared at me like an alien and then was like "I don't get it" So I told her what it meant and she was like gotcha. She thought I was a big science nerd instead of it being a disease. I wish I was a science nerd instead of having a disease I think it would be more fun! Anyway today is Wednesday and it is my birthday! I woke up and got allergy shots. First you have to tell them your birthday the first lady never caught on that today was my birthday but the second lady did. She was like well happy birthday. The doctor just laughed. Like it was funny because I was getting allergy shots on my birthday. the nurse continued on the conversation and said I am sorry you have to get shots on your birthday. Then she said Bless your heart and I walked off because I was done. I made myself a birthday cake made of Dum Dum lollipops, Dum Dum Candy Canes, and smarties. The base was an empty Kleenex box. Mom called the pulmonologist because I need to get back to seeing one because we can't get my asthma controlled with the allergist. She called to see a new doctor because our old one left and they told us we could either pick an appointment for Thursday or not until September. So of course we pick the appointment for tomorrow! I'll get PFTs done and hopefully we will be able to discuss my lung issues and find a new situation to address the issue. I also have an orthodontist appointment in the afternoon. We are packing for the beach we leave on Friday. Tyler's dry suit came in so he will be able to go in the water and swim like a normal kid because of his central line he is not able to get his line wet. We will be gone until Monday I believe. Then we have a week free of appointments besides Tyler's therapies.


On another note I want to let everyone know that this year I wasn't able to have cake or ice cream or any other special treat for my birthday. I want everyone to realize that there are people out their who can't take a bite of their cake. We have to be extremely creative and find a new idea for us to be able to enjoy a treat but it doesn't compare to what others get to eat for their parties. At my party in July we won't be eating food. I'm just going to have a few friends over to swim. I'll ask mom to make snowcones but that will be it. Unless I still have corn then. Maybe, we will add some popcorn to the mix.  I am okay with nothing as long as I have friends around just to hang out and pretend like it's a nomral summer day and not a birthday party.

Hope you guys enjoy your day as much as I did. I got neon pink converse for my birthday.

Thursday, June 6, 2013

Summer Camp

I went to CCK on Saturday for camp for a week and I had an amazing time with no major medical issues. It was so much fun!! I made some amazing friends that will last a lifetime. Anyway now I am home and resting. I'm exhausted we spent every single waking minute doing something it was tiring. On Wednesday night on of the staff members made me an ICEE that was Michaela Safe. I loved it so much. It makes me happy when people actually care enough to take their time and do things for me. Nothing else to do now that I am home. Just a lot of resting. I feel too tired to do anything so I'll probably sit around on the TV all day catching up on my TV series. No major appointments are coming up. At least I don't think so....My birthday is in 13 days though!!! AHHH I'm so happy. If I really want to I can take my permit test but I'm not really interested in driving but I'll probably just do it anyway. Anyway I am so happy to be home and now I can rest. Good Night to all. <3

Monday, May 13, 2013

Surgery Wednesday.

Sinus surgery is still scheduled to Wednesday. I ended up falling turkey and now I've lost the beloved white potato. I had a GI appt this week. It went good I guess. He gave us more food trial options but I really don't feel like trying anymore. I did start a food trial today though bison. Buffalo pretty interesting food. It tasted like popcorn!! Don't ask about that one. :_)  Did my faith statement tonight in front of council at church. That was pretty fun. Anyway, sleep doctor appointment tomorrow, surgery Wednesday and Sunday I get confirmed!! :) Busy week!

Saturday, April 27, 2013

Loosing a Friend

I never thought one of my friend's would actually die. I mean I know we are all sick but everyone has been doing okay or so we thought. A girl named Alex followed me on Instagram when I first got my feeding tube. I think it was because she also had a tube at the point. I followed back and we talked for a little bit. We continued to follow each other and talked a little more but soon that faded away and I found new people to talk to as well and she just carried on like normal. Alex had been sick in the hospital for about 2 weeks now and yesterday in the early morning hours Alex left the world. She told everyone she was doing okay and not to worry about her but I guess she wasn't. She was a great girl an amazing poet. Alex lost her battle with Cystic Fibrosis. Cystic Fibrosis is a lung-digestive disease. Always had a smile on her face no matter what she was going through and most people can't do that. Before you even know her story you would fall in love with her. It's hard to think about how she's gone and maybe we could have talked a little bit more but we didn't and that's okay. One day it could be me or anyone other one of my close friends who passes away because of their illness and it is kind of scary to think that way. Alex passing opened my eyes and some of my friend's lives. We all knew we we're okay but are we really. Yes we are sick teens and we are doing okay but that's what we thought about Alex and she wasn't.  Please pray for me, Alex's family, and anyone else who was touched by Alex at one point or another. Her Instagram user name and her motto  is Every Breath Counts. I'm glad she made every breath count and she can breathe freely in heaven now. I'll see you again beautiful angel.

Thursday, April 18, 2013

Surgery Has Been Moved

At first we had surgery scheduled for the 22nd of May but we had to cancel because my End of Course test for English is on the same day!  They did however have a cancellation for May the 15th so we are taking that one. I have to miss a soccer tournament which is kind of upsetting. I was promised that I would be okay and well enough for confirmation 4 days later. Mom says I probably won't feel up to much though. So I'll be there for the service and go home more than likely. Anyway that's the update for now.

Saturday, March 23, 2013

When Can I Feel Better?

Well....Where do I start. Yesterday was pretty crazy. Mom went to pick up my medicine at the pharmacy. She should have been able to get my new sleep drug and my allergy pill. Well the insurance won't let us fill my allergy pill. I am all out!! We are out because we upped my dose two two pills daily.  They needed some authorization for me to get meds. This was already done but someone says they never got the authorization! So around 4pm on a Friday afternoon. We were trying to sort things out. They sent one fax in and the insurance denied it! So again they sat on the phone with insurance for an hour and at 7:30 they got it done but it didn't matter because no one was there for it to be done!!! The doctors couldn't do anything for us and we we're told to come in first thing in the morning. We did just that. We actually have quite a decent plan. I am put on antibiotics and steroids. Even though we didn't want to do that because of my CT scan we have no choice. I was put on high dose of steroids so I need to take three pills a day of the steroids and antibiotics. That means I took 5 pills this morning! It is supposed to be hard on your stomach but I have never had a problem with it before. Today I took the pills and an hour later I was in a lot of pain. So I did a feed and took nausea meds. That helped a lot! Anyway the rest of the plan is to continue with my CT Scan on Monday. Pray that my allergy pill will be approved Monday. Then Thursday we get the results of my immune level testing. If it is still really low and has gotten worse we will make a referral for me to see an infectious disease doctor. I got diagnosed with Chronic Fatigue Immune Dysfunction Syndrome. It is the closest diagnosis to my situation at the moment. This is how I will get into the infectious disease doctor when needed. So we really don't think that that syndrome is our main problem but we have to have it so when I do get the referral I can get in. It was an early morning today getting up for the doctors because I started my new sleep pill last night. It didn't help me go to sleep but once I fell asleep it was amazing!! I slept through the night without waking up. I fell back asleep this afternoon while the boys went to a friend's house to play. I found out a really cool trick yesterday!! You can plug headphones into your g-tube button. It is actually really funny. It doesn't make noise though which is quite depressing. I'm helping Mom make a video about Tyler and his medical journey. So stayed tuned for that one. With that video I will also post all the links to the other videos that have been made about me, Tyler, and feeding tube awareness.

Sunday, March 10, 2013

Back To Reality

It's was a great weekend and I was sad to see it to come to an end and we have to go back to reality but everyone does eventually. Friday we drove 6 hours to Kentucky for the retreat weekend at The Center for Courageous Kids. Friday night was introduction, games, and some dinner. The games were really fun and we found some of the people we knew and hung out with them. Saturday we woke up bright and early and did the early morning activity before breakfast  After breakfast I went swimming while everyone else wanted to go fishing. Kiley caught a huge fish and while I played volleyball with a new friend. Lunch came around and the guy in charge made some noodles for me that I had brought from home so I could eat! During lunch I also met a boy name Tyler who is my age and has a feeding tube. He was shy but it was still cool to actually meet some one else like me. Soon we did some arts and crafts for the rest  of the afternoon. At dinner they had a snow cone machine with safe flavoring!!!! YAY! It tasted amazing. We had a dance party while the parents went to the bowling alley and talked. I danced with Kendyn and Amelia. Tyler was way too tired and just sat down and watched everyone. Kendyn is an amazing dancer!!! He was so funny to watch. Sunday was the last day and we got to sleep in. I think everyone was a little thrown off by the time change and we got to brunch a little late but oh well. We also went to the camp store to buy t-shirts. I got a shirt that said CCK STRONG. It looks really cool! After that we went horseback riding. That was cool. There was a boy in a wheelchair and he was even able to ride the horse. I thought that was amazing. Only at this camp would this child would ever be able to ride a horse! <3 We signed the banner and picked up are crafts and it was closing. We took pictures and it was sad to leave. Another six hour car ride and we are home. Tyler is extremely tired and isn't feeling the greatest. I think my infection has spread to my lungs as I am now having trouble breathing and hacking up a storm. We still aren't really sure about bread. Mom told me to pull it for a while until I feel better and try again. Now it is time to sleep for the next few days! I am exhausted! I hope everyone else is doing good! Keep fighting! <3

Wednesday, March 6, 2013

I Don't Look Sick, but I Do Look Strong.

I found two amazing quotes online today I will post them below. I think they are really powerful for anyone with a chronic illness.
I don't look sick, but I do look strong.

In my world,
I am not a statistic,
I am not a number,
I am not a diagnosis,
I am a child with
different abilities taking
on a world that
refuses to understand.


Hope everyone had a good day and a good night. Off to bed! :)

Sunday, March 3, 2013

Twas The Day Before Surgery...

Twas The Day Before Surgery! How exciting? We have to be at the hospital at 6am! :( So we are leaving the house at 5:15!! So I will be waking up early for an 8am surgery. I went to church this morning and had a great time. Confirmation went well too. Then we went to Rachel's apartment for food!! I am finally able to eat an average meal. Well...as average as plain macaroni noodles can get. NO PAIN AGAIN!!! :D Tomorrow will be the last day with this food trail and I'm really gonna consider it a pass already!!! Anyway we ate lunch there and left for ice skating. I am a good ice skater if I do say so myself. I skated around with Aksel for the whole time until I got trucked by some old guy! OUCH!! That hurt and I am so glad I decided to disconnect from my tube feeds right before or that tube would have been ripped right out of me! That would have been bad! Then I took it easy for the rest of the time. Went home ate some more noodles. Skype with the most awesome person ever! Christine!! haha My microphone isn't working so we had an interesting time trying to figure it all out. Pictures on Instagram for those who follow Christine and I there. Now to finish up feeds for the night and then I am NPO after midnight. I may end up staying up all night since I never get to bed till 3am anyway? Last day with the PEG tube and I am glad to see it go. I hate how the PEG sticks out and all that it is annoying. So glad to get the AMT mini button. A pretty awesome day before surgery if you ask me. I hope it doesn't hurt too bad when I wake up. It shouldn't but you never know. I will be posting about my crazy complex life on this thing you call a blog. :) Hope you enjoy!