Monday, July 28, 2014

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!




Wednesday, July 16, 2014

You Can Stare and I Don't Care

For many of us who are chronically ill we come to learn people will always stare! And trust me they do that a lot. I don't think they mean to do it on purpose it's just human nature but it always turns out to be really annoying for those of us who are sick. Like is the person trying to be mean or are they just curious? I often find most people are just curious. They see something different and they automatically have to know more. Sadly more often than not these people are actually afraid to ask. They don't want to be mean to that person they are staring at but to us who are the ones who are being stared at it is more mean to not ask at all. Being the person I am I tend to raise awareness and educate those about my disease. I'm pretty positive if you have ever read my blog before or even just know me as a person that statement would be pretty accurate to you.

Obviously if I go to the beach or the pool and wear a bikini people would stare. Heck people stare even when they see lines sticking out of my shirt or my feeding tube pump beeping! I mean trust me I have noticed it causes quite the disturbance at the mall, school, or even church. I don't mind the stares at all. You learn to overlook them and just mind your own business. It is just my life not theirs. I know what I am doing and if they really cared they would ask me themselves. Some people actually do and I basically just explain well my stomach is broken and I just can't eat like you. So these tubes help me eat and I have to get food into my heart/veins plus that feeding tube that sticks out of my stomach.

Yes I have gotten some very rude people and those who are just idiots. Like apparently my tube is just headphones? YES I really got that question! They help me hear my stomach juices... (SARCASM)  Well you actually CAN plug headphones into your feeding tube...Yes I have tried!

People always tell me they are embarrassed about showing their tube. I personally don't find it a big deal but I know many are scared of being judged by others because they do have a tube. They don't want to draw attention to themselves. Or they just don't like the feeling of knowing they need tubes to keep them alive and they don't want people to know about it. My personal feeling and I guess motto is never be ashamed of something that keeps you alive! That's what I've stuck with! My tubes are my life line without them I would literally drop dead. I have been very open about my disease if people ask me about it. No I am not going to publicize it that I am sick but if you ask that's up to you! There are many friends of mind who don't even know I am sick or just never even realized that fact that I am connected to tubes which is weird to me because I mean it's quite obvious!

I guess those of us who are sick don't know how to tell others who just randomly ask and they feel uncomfortable but we also have to remember those who are asking feel uncomfortable about asking too because they aren't sure about our response. Just keep it simple usually they won't try and go too in depth they just want to know the basics and not everyone has the brain of a doctor or nurse! The general it's just a feeding tube because I have so and so disease is enough. Little kids really don't care. I have noticed they stare less than adults! They just take one look and basically ignore it or they ask what it is and you say it's a feeding tube bc I can't eat like you and they are totally fine with it! While many adults are sadly disgusted by the fact that I even have a tube. It must suck to have a twisted mind that is appalled by anything different! I think I could probably teach them a thing or two about acceptance and today's society.

Anyway what I say is let people stare I don't care! It's my life not theirs they can row a boat and get over it!(Isn't that the saying?)  Anyway what I am basically saying to those who are ashamed of what their disease has done to their body is never be ashamed of something that keeps you alive! That's just the way God made you and if that is fine with him then it better be okay with everybody else! Also to those who are the ones who stare and ask questions. Just be respectful about it! Most of us don't care if you do ask questions because all that means is that you want to know more about our struggle and hey getting a quick science/medical lesson never  hurt anybody!







Monday, July 14, 2014

Paper Clouds Apparel Fundraiser for Tubie Friends

A few weeks ago I was asked to draw a design for Tubie Friends which is an organization that makes stuffed animals for children with special needs receiving feeding tubes and other such medical devices. These bears have the same medical devices as the child receiving the bear.

The drawing designs would be sent off to Paper Clouds Apparel to see which lucky four drawings would be used for a fundraiser benefitting Tubie Friends.

My drawing was chosen!!

Anyway this means from today forward for the next two weeks you will be able to buy my design along with three other deisgns. 50% of the proceeds will go to Tubie Friends. While the other 50% goes to Paper Clouds Apparel. Paper Clouds Apparel is an organization which gives jobs to adults with special needs and the hold fundraisers benefiting special needs charities. Every two weeks a new charity is chosen and as you buy your clothing their workers are special needs adults who would not otherwise have a job if it wasn't for Paper Clouds Apparel. They get paid with that other 50% of the money. So this way you are benefitting both amazing charities!

To buy a shirt you go to papercloudsapparel.com Next you find which every design you want and purchase one! Easy as that! You have from today all the way until July 27th. I hope you enjoy our designs and support both organizations! I would love if you bought my design!

Saturday, July 12, 2014

Terminal...

Terminal...I hate that word. I don't hate it in that sense of just someone having to go through that process of life where you die from an illness. I hate it on a personal sense. It isn't just someone to me. That someone is real. I guess it's the story of my life. No I'm not dying and I am pretty sure I won't drop dead tomorrow. I mean I don't know that but at least I hope not.

Referring to the word terminal has always been weird for me. We know the prognosis of how things are playing out in the life of my brother and I. Some days we are doing great other days not so much. I know the medical procedures we endure have complications that can result in death. Yes even diagnosis has that "terminal" word attached to it at times.

How does dying effect me more than anyone else? Most people don't even realize that they are dying. Death just doesn't even seem real for many people. I was talking with someone who said she never experienced death until she was twenty two. I was shocked. Death is just kinda a common thing for me. Sadly I can name off a handful of my friends who have passed away from their illness. "Normal" people don't experience death typically. It isn't something they have to think about. They don't have to worry about dying tomorrow they just don't even feel like it's real until it actually happens to them or someone they love.

 How does dying effect me more than anyone else? The word feels like such a limit. Just because we are sick does that mean we are dying? To me it kinda looks like we are still living! Death is just a process everyone goes through and when you really think about it for a minute...aren't we all dying? Every single day, every minute as a matter of fact we are all getting one step closer to our death the clock is ticking. Okay now that's the pessimist way of looking at it. Well now focus on the positives. If you are reading this I am pretty sure you are alive. Do you have a pulse? That means you are living. At least I am pretty sure that's what the definition was in the dictionary.  We are all alive and living.

Which means we are living while dying. Some people just live their life better than others. I guess that means some people also have to die in a different fashion just like we live in a different fashion. So my question is why do we call ones life terminal such as mine or my brothers when we just know what's going to kill us? Yes our disease probably will kill us if some natural disaster doesn't first. So if we put this the right way then we are considered terminal because we know what is going to kill us. No we do not necessarily know when. It could be today, tomorrow by chance, or even six years from now! That is the same with "normal" people. You yourself could die today, tomorrow, or even six years from now.

I guess to me it feels weird to put a label on someone when truth be told we don't know. I guess maybe I am just someone who is hoping for a miracle and I will be the first one to admit that I am. Holding on to hope that one day we will overcome the odds and I am pretty sure that's gonna happen if you have ever met my brother and I.

People always treat you weird when they find out you are dying. I've noticed that. I know I'm not dying per say but it also goes along with being sick. Most people think just because you have a chronic illness it means it's terminal and it's the end of the world. I'm just trying to be real I guess. Terminal is just a really weird world. To me it means that now I know what's going to kill me. Well actually I am more than likely this will kill me. I don't know and neither do the doctors. That's God's plan. I could get hit by a car tomorrow then this label won't apply to me anymore! No I am not hoping for that at all. I just think people go about the word in a wrong way.

Most of the time doctors give us a time frame. They say "six months to a year." And I don't know that just sounds so weird and so stupid. Why give a time frame on life when you don't know? Is that somehow supposed to prepare the family better? I know I'm not a psychologist but I am pretty sure that would make me feel like shit. I know I'm not the only one.

Doctors give us these words and what happens when we live past them? Or we don't die. We just keep living and the disease doesn't kill us. The words of how things don't look good. Terminal just tears me apart and dying in general. No we aren't dying. We are LIVING. And to me that's a damn good answer.

Friday, July 11, 2014

Our Story: Then to Now

Many of you know I have some amazing friends. One of my best friends is Brynn she is 20 and lives just an hour away. While they all know who she is you probably don't know how I met Brynn. Most of you would assume we had a class together in high school, we met through friends and hung out at a party, or we played sports together. However that's not the case.
This is Brynn and I the first time we met!

Back in November 2012 when my health had completely declined I needed a feeding tube to get the nutrition my body needed to survive. I had reached out through support groups on Facebook, Instagram, emailing, and other such social networking sites. I had found some amazing friends and people who were able to help me cope and to help me feel like I was normal because they were just like me. One of those people specifically is a girl named Christine. Who to me has multiple names I call her Christ or Chrissy not much else. Just a little inside joke for those who know it.
This is Chrissy!

Chrissy and I instantly became best friends and she was slowly introducing me to many other people who are like me. Right after Christmas my brother was inpatient and I was just having a normal talk with Chrissy and she told me about this girl named Brynn who she was going to meet in Florida in a few weeks. So shortly after I typed in her username on Instagram. Brynn was inpatient at the time she had a similar situation as mine due to major allergens to the world basically just like me! So I followed Brynn and she followed me back.



I didn't notice anything weird and I started talking a little with Brynn. Shortly later Brynn was doing better and she was being released from he hospital! She posted a picture and the background looked similar to the hospital my brother and I go to. Tyler was released only days before Brynn. As you know there is that thingy on Instagram where you can tag your location. Brynn had tagged her location to the EXACT SAME hospital Tyler and I go to! I was freaking out! It was soooo cool to have met someone just like me and is just down the road! Brynn had just turned 18 so she was being kicked out of the children's hospital and having to replace it with the adult ward. I still didn't care.


From then on out we started talking always! I had surgery in January and was inpatient for some time and Brynn was inpatient during the same time! We had skyped several times and by the end of February 2013 we met for the first time ever in person. We went to the mall and just talked I knew we would be great friends! My brother was having surgery the next week and so was I! Tyler was having his surgery out of state and it was a major abdominal surgery. We went into build a bear and made him a bear. It was a green St. Patrick's Day bear.
Here is Tyler post surgery with his bear!

We continued talking over the internet and keeping in touch with our health and just being normal teenage girls who talk about music, concerts, tv, celebrities, and more! Once school was out I was finally able to hang out with Brynn when Tyler was inpatient. I spent the day at the hospital and the governor came to visit! Once Brynn's Mom was off work she picked me up and I stayed at her house for the night!

September 2013

My health was declining as July end and August was starting. August brought the first day back at a real school. I was starting tenth grade but only made it 9 days before I became too ill to function. I was admitted to the hospital on a late Tuesday night and from there we started my journey with two surgeries, one picc line placement, TPN started, j-tube feeds, IV medications, and plenty of scans and xrays along with a new diagnosis and plenty of questions. I finally left after a month of being in the hospital but before I left I got to spend some time with my best friend! Brynn came and we just laid in the hospital bed and talked, we travel upstairs to the playroom to play air hockey, and took plenty of selfies.


Brynn and I were finally able to meet up again in the very first week of January 2014 maybe it was December 2013 but who cares? I mean close enough right? We came up with the idea an awareness project we both have feeding tubes. and now at this point we both have a port a cath in our chest. Although that was not the case six months ago. So we got creative and added some beauty to our ugly diseases and show the world even different can be pretty! I'll share some photos here...




Let's just say we raised quite a bit of awareness that night from something that just turned into a small little project and a way for us to pass the time while being goofy and hanging out!


A few weeks later right before I left for my trip to Nationwide Children's Hospital I found tickets went on sale to see Hunter Hayes in concert in Asheville which is a little less than two hours away from Brynn's house. Tickets had gone on sale at 10AM and we finally cleared it with both our parents and bought tickets at 11:30AM. Let's just say we were pretty excited! We had to wait all the way unit April 19th. The night before Easter I met Brynn and her Mom at CVS by the hospital and we were off!

We took quite a few snapchats and it was also very cold! Quite unusual for a spring day in North Carolina but we made the best of it! Of course the sick kids got chairs to wait outside for hours because we just couldn't stand that long! We also made friends! Quite a few actually. Swiss was our favorite at least in my opinion. He works with Hunter and does a lot of his webisode stuff on youtube. Which we actually got to appear in! The song "Invisible" is a huge song for many because it talks about bullying, your feelings, and getting through tough times. Well obviously Brynn and I kinda are invisible girls. I mean having an invisible illness I don't know how more invisible we can get? We are in Webisode number 77 and we actually got to talk to Swiss a lot I think he really cared about what we were saying. I mean I don't see how anyone couldn't care? I mean I think we are pretty adorable if you ask me. Swiss took a photo with us too!

We said our goodbyes and it had been mentioned how we wanted to meet Hunter and raise some awareness and show our story. He said he'd try and just walked off and he came by and hour later saying he'd be right back. What does he come back with?
Meet and Great Passes!

Our faces light up! We were shocked and didn't expect this would happen at all! We made it through security and thankfully they did not give us too much of a hassle.We were just like um yeah we are kinda connected and they didn't seem like they wanted to deal with something like that so they passed us along. We got through and bought some tshirts and then to the bathroom to wash our hands and handle our tubes and what not and we went and waited in line to meet Hunter Hayes. We sat down on the floor and our tubes kinda got tangled together! Ooops chronic illness problems. We ended up attached to each other literally!

We finally got up there and he was completely taken back at first because we both had a good three wires and tubes sticking out of our bodies between meds, tpn, tube feeds, etc... We were like it's okay don't worry about it and he got over it. We told him we were sick and that's why he kept saying "God bless y'all" and it was quite funny. Over and over again bc he didn't have any words! We even told him about the Teens with Feeding Tubes 2014 Awareness video with how we used his song and he was thrilled we were able to do that. Five months later and the video has more than 5,000 views! He signed my backpack which I put TPN, Tube supplies, and other medical devices I may need. He signed Brynn's tshirt and made a video with us for our good friend Sarah! It was the most perfect night ever.
Brynn and I sat in the most perfect seats ever with an amazing view and when the song Invisible came on we belted the song out as loud as we could and just had the best night ever! It didn't mater that our bodies were failing us, that we live in the hospital more than we do at home, that we take countless medications, or that Brynn was just learning how to walk again. All that matter was we were standing there side by side singing as loud as we could like normal girls and just having the best night of our life! We finally made it home around three am and we just talked about the most amazing time we had together and we just couldn't get over it! I feel that this concert was the best thing Brynn and I have ever done together and it really made our relationship that much more special!

I went to her sister's graduation party this May and I got to meet two other chronic illness warriors in our area who I have talked to online but never physically met.
From left to right: (Michaela(me) Brynn Alex, Betsy and Moose the service dog!)

Shortly after Brynn was readmitted to the hospital and she has been there for six weeks at this point. All of this time has been spent in ICU. The doctors are unsure of what is going on and Brynn has been in horrible pain and dealing with episodes left and right that sometimes last for hours on end. She is waiting to be transferred to Boston where she can receive care by a specialist who understands her disease. Throughout this entire time Brynn has been fighting one of the hardest battles of her life and I will be there to support her throughout the entire time! Never wanting to leave her when visiting hours are up!



Both of us have been fighting hard to beat this stupid chronic illness we have and I am so happy I could fight alongside my best friend. I know we both absolutely hate being sick and we wouldn't wish it on anyone in this entire world but we are both very thankful for this disease! Without it I don't know where I would be without my best friend! I know for a fact she feels the same way!

Real friends stay by your side no matter what happens!

Thursday, July 3, 2014

What Is Normal Anyway?

I've always wondered what normal is... I know so many people say well normal is overrated or who cares about what others think of you? But even hearing that everyone is unique and we aren't all normal still hurts.


My entire life I have dealt with being different from everyone else. When I was little I could never eat all of the foods my friends were able to eat. I would always get something special to eat at parties. Most of the time I ignored it that was never a big deal for me. In preschool, I was diagnosed with food allergies: Peanuts, tree nuts, fish, and shellfish. These things were managed for most of life until things begun to go downhill when I was in the fourth grade when I started having an increase in allergic reactions to food we thought to be safe. I was then diagnosed with even more food allergies and suddenly more food was stripped from my already limited diet. Fourth grade was the year when everything changed for me and it wasn't just because of the food I couldn't eat, but rather because I started to realize I wasn't like everyone else. I couldn't eat what my friends did, I was left out of school celebrations, ice cream awards, Christmas parties, Halloween parties. Middle school was a breeze for me. I had a really hard year in eighth grade with bullying due to my food allergies. This also occurred during the time of the next decline in my health.

By my freshman year of high school, my health was rapidly declining and on November 16th, 2012  I had an NG-tube placed. The feeding tube allowed me to get special medical food that did not cause my body to go into allergic shock. This is often called an elemental diet a part of treatment for a group of disorders called Eosinophilic Gastrointestinal Disorders(EGIDs.) My brother had been diagnosed with an EGID and although I was never diagnosed with an EGID I started to feel better once this course of treatment was pursued. The tube went into my nose down my throat and into my stomach. Obviously this no permanent plan, but it worked for a while. I always felt weird going out in public with an NG-tube It was hard to explain to those who didn't understand or simply didn't care. I mean I don't mind the stares, however, there is a way to go about asking questions and wondering what is wrong with me that caused a tube to be shoved up my nose. Eventually, I was diagnosed with Mast Cell Activation Syndrome a disorder in a similar class to the disease my brother has but treatment is slightly different.

As we tried to reintroduce food into my diet we noticed the whole trial and error thing was not working. An NG-tube is not a permanent thing so I had a surgical tube placed on January 31st, 2013. After my surgery, my life was starting to return to normal besides that fact that I was unable to eat food. Most people don't realize how life changing it is to go one day from being able to go out to dinner with your family and enjoy a meal to then spend the next several months (and now years) being unable to eat food. I don't get to eat Christmas cookies, family dinners aren't a thing in my house, I do not eat a Thanksgiving dinner, Easter eggs are out of the question and on my birthday I am unable to eat my own birthday cake. (Think about that for a minute... Food is everywhere. Our society is very much centered around food and myself along with my brother are unable to participate in this societal tradition.)

Summer of 2013 I was crashing and things turned ugly very quick. I had just had sinus surgery because my NG-tube ruined my sinuses and I was no longer to tolerate feeds through my feeding tube. My digestive tract was simply shutting down. This was the one thing my doctors had promised would never happen. They said I was never going to wind up like my brother who was fed through a venous catheter (more permanent IV) every day. My brother, Tyler had Mitochondrial Disease. His struggle has been so painful to watch. I could have never imagined myself in that place. August 2013 only nine days into my sophomore year of high school my body could no longer handle the brutal torture. My blood work had multiple critical lab values. The doctors were surprised I was still coherent upon arriving back at the hospital on that Tuesday night. To be quite honest I don't remember most things from that first week. When I walked into the hospital the weather outside was still in the mid-seventies; When I walked out of the hospital a month later it was much colder and leaves littered the ground.

One week after I was admitted I was diagnosed with Gastroparesis just like my brother and just like my brother we later learned it spread shutting down my entire digestive system. A new type of feeding tube was placed but just like my brother this did not work. After several weeks in the hospital and many difficult conversations, I allowed the doctors to place me on TPN (IV nutrition.) At the time the fifteen-year-old me was beyond terrified of the life that was ahead of me. The doctors knew my fears but it had to be done. Thankfully, I began to thrive again. I was able to go back to school! High school was a wonderful experience for me socially. My school was the one place I was able to get away from my life and feel normal. Most of the kids didn't know I was sick and even those who did never seemed to focus on me being sick. I was able to be like everyone else despite the grim outlook regarding my future.

In November of 2013, I was diagnosed with Mitochondrial Disease. The same genetic condition my youngest brother has. Mitochondrial Disease occurs when there is a defect in a person's mitochondria. The mitochondria produce roughly 90% of the energy used in a person's body. This problem replicates over time and only progresses. This causes the multiple system organ failure as the body doesn't have the energy to make everything function. This will continue until a person's body is simply unable to carry on. There is absolutely no treatment or cure for Mitochondrial Disease and only a very limited amount of research being done to study the disease. Both my brother and I are pretty far along in the process as far as disease progression those. I am lucky because being diagnosed at a much older age gives me a greater chance than someone like my brother who was only six years old at the time of diagnosis.

In January of 2014, I was told by the top specialist for my Gastroparesis that I would never get better if anything I will only get worse. He said I would never be able to work my way of IV nutrition, but God has had a much different story for me. I had a major surgery in July 2014 which placed a feeding tube separately in my intestines. For two months this worked and I made it off IV nutrition (September 2014) and was able to eat very little by mouth. However, it just wasn't my time and my body was pushed too hard too fast. I was placed back on IV nutrition a few weeks later.

October 2014 was hard because I had an extreme reaction to an IV iron infusion leaving me admitted to the hospital for 9 days. My port-a-cath was also not functioning properly so I later had a PICC line placed. This ended up being a disaster and I was fully conscious while they tried to place a PICC line and failed more than seven times. It was one of the most awful things I have ever been through and I have been through hell and back. Eventually, the PICC line failed too and I had another central line placed in my chest the following month. Days after getting out of the hospital in October I began immunoglobulin therapy for another condition I have affecting my immune system called Common Variable Immunodeficiency (CVID). Initially, I tolerated the infusion well, but the next day I had a migraine. All of this is perfectly normal because most people have adverse reactions, but my reaction later became anything but mild. I woke up with a 103.9 fever the following morning and was rushed to the emergency room. (When you have a central line a fever of 100.4 or high means I have to be admitted to the hospital for a minimum of 48 hours and placed on IV antibiotics as a precaution in case I have a blood infection as a result of having a central line.) I don't remember most of that week but I do know everything in my body was doing the exact opposite of what it should have been doing. My reaction was extremely rare because the infusion had caused an extreme drop in all of my blood counts. For most people, their blood counts are increased with the infusion, but everything in my body was being killed off by the infusion. I couldn't do anything for myself during this time, all I could do was sleep. I needed help doing the most basic things like walking and getting out of bed to go to the bathroom.
In December of 2014 I was diagnosed with another condition and began receiving aggressive treatment for that disease affecting my autonomic nervous system, which greatly improved my overall health. However, by June of 2015, I was able to go back off of IV nutrition and only required tube feeds and IV fluids again but by December of 2015 I had crashed and burned and I have been on IV nutrition ever since with no end in sight. Except for the fact that I am currently getting almost no sort of nutrition because of a reaction to another IV iron infusion back in August of 2016 and I am still suffering the effects. In 2016 alone I have had three separate blood infections one of those leading to septic shock. My central line broke in April of 2016 and I had a new central line placed just three days before my senior prom. The central line that was broken and removed ended up being infected so I was started on antibiotics. Two weeks later I developed a high fever and was sent to the hospital with an infected port-a-cath. I was barely able to break out of the hospital in time for my high school graduation. For the longest time, the doctors said I was never going to be able to go but the morning of my graduation I took a shower without passing out and I was free to go home on IV antibiotics just four hours prior to walking across the stage to receive my diploma.

The latest and most serious infection occurred around Halloween. My port-a-cath had been having problems for a while and we were trying to get help from my doctors. The day after Halloween my port was unable to be accessed on one side but the other was working. Almost immediately after getting the one side working I became extremely sick. I was able to wait it out until the following morning when I had a hematology appointment but by the time I was even worse. I had a very high fever and was taken back into isolation and admitted to the hospital. In less than twenty-four hours my blood cultures had already popped up positive. (It typically takes at least forty-eight hours for the blood cultures to show whether or not there is an infection.) That same day the ICU nurse came by to see if they could get the other side of my port working and she noticed infection was leaking out of where the needles were last placed to get my port working. She refused to access my port again because it would only flush infection right back into my body and started an IV. I am so very thankful for this nurse (she has taken care of me multiple times) because of her my body didn't continue to decline and I was able to get out of the hospital even faster than originally planned. An hour after she placed the IV my body crashed and that's when the doctor's started prepping me for emergency surgery. When they went in to remove my port from my chest they noticed there was infection leaking around my port, as well. The surgeon had to scrape out all of the infection out of my chest and he had to leave the wound open to make sure the infection could get out. Thankfully, I became better almost immediately following this surgery and three days later they placed a new central line and after that the following day I was able to leave the hospital.

Since then things have been manageable for the most part. I started college in August of 2016 and I have now successfully completed my first semester. I did fairly well despite the whole run in with septic shock and I have made some amazing friends! I even made good grades too. I still live at home which is extremely helpful for when I need it but I am independent for the most part. I know I am not normal. I am different yes but that doesn't make me any less of a human than you are! I think that pretty much sums it all up even though it is so long but it shows you what I've been through and how hard I have had to fight just to get some sense of normalcy in my life. I continue to be a huge advocate for teens with chronic illnesses and feeding tubes. Those like my brother who are coming up after me still need a voice in this world where it is lacking. Most people don't know about Mitochondrial Disease and I don't want another sibling to feel how I have felt as they watch their sibling die while nobody cares enough to make sure that those with this disease will one day have a treatment instead of being sent home to die. I still enjoying speaking to crowds at church, conferences, and being a patient advocate to doctors, nurses, and hospitals. I want my voice to be heard in big ways and this blog is the first step into making my dream happen.



My little brother, Tyler has struggled with his health since he was born seven weeks early back in May of 2005. He had emergency surgery at thirty-six hours old and we found out that he was allergic to soy and dairy. He was supposed to get better but he never did and had to have a feeding tube placed around the time that he was 9 months old. At age four Tyler was diagnosed with Eosinophilic Esophagitis. White blood cells attack the food proteins that he eats in his esophagus essentially, causing him to be allergic to all food. Later on, he began to develop motility issues with how well his digestive tract pushed food through so he had a special feeding tube placed into his intestines so he could get his nutrition, but Tyler only continued to get worse. On April 16th, 2011 Tyler had a seizure in my arms and two weeks later he was diagnosed with Mitochondrial Disease. He was diagnosed just two months before the first little boy I met with Mitochondrial Disease passed away. Tyler's diagnosis hit me hard and that's when I began being a strong advocate for children with Mitochondrial Disease and other chronic illnesses.

A year later Tyler was placed on IV nutrition because his body was completely failing him and his feeding tube no longer worked. That was in March of 2012 and he has now been on IV nutrition for almost five years. In the following months when Tyler was originally placed on TPN, he underwent testing to see just how broken his digestive tract really was. The procedure went horribly wrong and Tyler was rushed into an 8-hour long emergency surgery. The probe placed into his digestive tract poked a hole in his stomach. Tyler already only had half a stomach from his first emergency surgery when he was thirty-six hours old. They had to separate his stomach and intestines to allow his body to heal. They removed even more of his stomach and even more of his intestines because his intestines were fused to his abdominal wall with scar tissue from prior surgery. When they cut him open it tore yet another hole in his digestive tract this time in his intestines. They connected everything in his digestive tract four months later but during that time he sent Christmas 2012 in the pediatric ICU because he developed a major infection in his gut following the initial surgery.

Since then Tyler's health has been up and down. He has struggled with multiple blood infections related to having a central line for IV nutrition. He also has had a very hard time with his body being unable to produce his own blood products meaning he receives multiple transfusions but at the moment he is stable for the first time in his life. He will complete fifth grade this year. He hasn't been in the hospital since August 2016 and that's an accomplishment! The biggest issue in his life right now had been bleeding in his digestive tract. As long as he continues IV nutrition nightly and avoids the whole food aspect of life he is doing amazing! I am so proud of him for all that he has been able to accomplish despite the many challenges he has faced. He also started being an acolyte at our church on Sundays for the traditional service and he enjoys it so much. There are so many things he is unable to do because of his health but he chooses to find joy in the things he is able to do.

Originally published: July 3rd, 2014
Updated on: May 20th, 2015
Updated on: December 25th, 2016

Wednesday, July 2, 2014

My Friends...

Everyone always ask me who are your friends? You tell them their name and they proceed to ask if they live locally to you(insert city, town, state)I say no and many find that weird well my friends live in a tiny little screen. Theoretically no they don't live inside my phone, computer, or tablet. These are my friends whom I call some of the most amazing people I have ever met or as I guess the "normal" people call them my online friends.

I have friends spread out from Australia, Germany, New Zealand, Canada, Spain, Ireland, Germany, and of course I have some friends in the US too. I could list Hawaii, Alaska, Texas, New York, Iowa, and North Carolina. I can also list those in my local area who I am friends with too; There is Cate, Betsy, Carole, Brynn, Alex, Ce'de, Logan, and I could list many more. It's strange to say that you are friends wit someone who you've yet to be in the same room with, hugged them, taken a picture with, gone to the movies or out on a date with one of them.

Some people have no clue how they could how I have all these friends across the world that I haven't met. We have all bonded over one thing and that would be our disease. Not always do we have the exact same disease but with any chronic illness you struggle with coping, learning how to live with pain, finding treatment options, and just being able functional in general. It has benefitted me because I know I am not the only teenager who is sick, the one who can't go to school always, has feeding tubes, surgeries, and missing out on being a normal teenager. To them I am not weird. I am just me. They don't ask 50 billion questions like everyone at school does because they already know what a picc line, g-tube, ostomy, central line, portacath, TPN, echocardiogram, endoscopy, and many other medical terms.

You get people who question you about these friends you've met like "How do you know this person is real or are they really who they are claiming to be?" Very good question I have yet to run into anyone like that. I have made some of the most amazing relationships online with these people who I consider my best friends. Plenty of us actually have been able to meet up in person and I think it is the coolest part ever! So many of us actually do know we are real from others who have met these friends in person! It is amazing!

I hate the questions of people who say well it's dangerous to talk to strangers! Are you sure what you are doing is safe? Okay while I agree I do not know who every single person I talk to is actually who they say they are I do know many who I can prove are real people. I am sure you can admit we do a lot of things everyday that aren't technically safe and we know that they aren't safe but we do them anyway? You can't deny that you haven't done something that was unsafe in your life! For example, when we were kids plenty of us would go walk across the street without looking both ways. Our parents would scream and yell at us because they didn't want us to get hit by a car who didn't see us. Maybe that is just a petty example but I know you could think of many more! In life you have to take a chance with everything and sometimes you just have to live a little!

While I have not met my friends in person. I know I have connected with them, sympathize with them, cried with them, been touched by their presence, and felt their heart. These are the friends whom I have never met but have the most amazing bond with ever. The friends I have made online are the most amazing, kindest, most understanding, and supportive people I have ever met in my life! I know if I ever needed them they will always pick up the phone, text, call, or even Skype me at any hour of the day if I needed them.

These friends are my life honestly. I have not connected with anyone in my life from school, church, sports, or school clubs as I have connected with these friends. They just make me feel special, loved, and important. Thanks to the Internet I have made friendships that will last a lifetime including a few sweet girls who I can't even put into words how much they mean to me. I could write a novel about every single one but I know it would make you extremely bored and you probably wouldn't care to read it but it means so much to me. I couldn't imagine my life without them!

For those who have become my best friends over social media because of our chronic illnesses I just want to say thank you. Every single on of you have helped me make it this far and I don't know where I would be without y'all. Probably curled up in a ball crying because it sucks being different from everyone in a world who doesn't understand. I can't begin to say how much I love y'all! Please never ever forget how important you are to me!