Just because I'm used to it doesn't mean it hurts any less...

I haven't written a post since August...That's the longest I have gone without writing a blog post in a long time. I keep telling myself that I just haven't had the time with my first semester of college starting, (I had my last exam of the semester a few days ago.) but the truth is I have been all over the place emotionally. I have been trying to find some normalcy within all of these new symptoms and frustrations that have come about since the middle of August. My new symptoms coincide with the start of my freshman year of college and the many changes in my life over the last few months have become overwhelming, to say the least. I have been trying to make sense of it all to describe exactly how it feels... So here it goes:

Just because I'm used to it doesn't mean it hurts any less... - Unknown

November 16th, 2012. Four years (and one month) have passed since I had a feeding tube shoved up my nose for the very first time. I've spent the last four years of my life fighting a civil war, in which I will never be able to win. As the 1,490 days have piled on so have the diagnoses or battles in the war. Who knew something we thought was so simple could be so much more. To this day I still question how I got here. I didn't expect things to get this bad, but I don't think anyone can imagine "this bad." Most humans don't believe the worst would ever happen to them. I certainly didn't imagine being an 18-year-old who is fighting for her most basic human right: the right to her life. I was supposed to get better, but I never did and I can't tell you how upsetting that has been for me.

Oh yeah, I got a tattoo in October.

Many believe that because I've been through these symptoms and treatments once, twice or even a hundred times before that it for some reason makes it okay. They think it is okay because I have gotten used to the worst and that I am now able to handle the struggles in my life. However, I think that's the worst part about it all. The fact that I've had to get used to the unimaginable is what's wrong with the situation. How on earth is it okay for someone to repeatedly spend so much time suffering, while there are very few people who care enough to do something about it? I don't understand it.

All I know is one morning I woke up thinking I had gotten a virus or infection and thought I would be better in twenty-four hours, but I never got better. The pain and sickness never went away.  I have come to find my new normal and how to cope with the pain. I have learned to adapt to the life of a teenager with a chronic illness, but keeping up with everything that role demands is exhausting. There are countless medications I must remember to take, I prepare and begin IV nutrition and IV fluids nightly, and I must take the time to get extra sleep to help my body recover from everyday tasks most normal people wouldn't consider being high energy tasks, but to me feels like a marathon. The pain is still here and it is still just as hard to deal with it today as it was to deal with it on the very first day my symptoms came about. Yes, I may have been through these situations a million times before but they still hurt and it doesn't get easier. Often times, I feel like maybe it is even worse. I'm exhausted, I haven't had a day without feeling sick in more than five years.  I have knowledge of what's coming, how much it hurts, how I felt last time this situation happened and how I know I never want to feel that way again. This knowledge makes me dread going through treatments once a month and dread the symptoms I get when my body starts to crash again. I have to push through because if I don't then I don't get to see all of the beautiful things in life and I won't get to accomplish all of the goals I have set for myself.

Over the years there have been up and downs. I have gotten better and then I got worse again and each time I get worse that is the biggest blow yet. I had hope; Hope that maybe I was actually getting better for once. However, each time I got worse again and again and again... That hope of getting better has been repeatedly taken away from me. I thought I was getting better...But as it turns out that was far from the truth. I often wish that the times I did get better never happened. I wish that I had never gotten my hopes up to let them fall again because all that means is that I have to relive the nightmare of getting sick over and over again.

I've modified my life each time a blow to my health has come along. I've found what works better and that makes each day just a little bit more survivable, yet that doesn't mean it's not as hard as it once was. Often times, it seems as though I expect things to go wrong. Those things don't surprise me anymore, I always know they are coming just not exactly when they will hit. As I said, I never expected things would get this bad and each time things started to go right I have held out hope thinking I was going to get better until another blow would come along. It's sad to think that I now have to expect something to go wrong in order to better prepare myself for what is ahead.


Here's the updates:


Since August there were one too many blows that I didn't expect. First, it started out with a freak reaction to IV Venofer (IV iron) two weeks before my first semester of college started. This caused fluid retention that no one knows how exactly it occurred but even four months later it is still causing problems and I am unable to get my IV nutrition because I can't receive large amounts of fluid without having retention issues. This means I've had to try to increase my ability to eat orally and that was working out at first. I was doing okay for a while minus the increase of nausea and symptoms related to my Dysautonomia due to the lack of fluids.

The next blow came in the middle of October. Over my fall break, we had a wonderful weekend at the Mitochondrial Disease walk in Charlotte, North Carolina. It was our first year driving up to the walk and we had such a great time! That was on Saturday. Monday I woke up with a rash on my leg. Turns out I had shingles. That was not a fun experience. I was on oral antibiotics for two weeks and IV antivirals for two and a half weeks. For those who don't know antibiotics often slow down gut motility (How well the digestive tract functions.) As we all know my gut function is quite limited so this put a huge damper on the trying to eat all my needed calories orally (or by jejunal tube feeds) side of things. Although, the shingles went away all of the drugs combined with not getting any nutrition made me feel absolutely miserable. I didn't even have a week to recover before my body decided to take an even steeper decline...

Charlotte Mito Walk 2016

The day before Halloween like any other Sunday, meaning it is port access day for me. My port was a double lumen port that was only placed back in April after my last central line broke. We were successfully able to access one side, but we were unable to get the other so we decided we would wait until Tuesday night to try again. I had a visit at the cancer center the next morning and it saves time and is much easier if I have both sides accessed before we get there. Well, Tuesday night(November 1st) certainly didn't go as we had planned. After we had finished trying to get my port accessed I became pretty sick. I couldn't stop shaking, I was freezing cold but I already had a low-grade fever, low blood pressure, fast heart rate, I developed a massive migraine and I couldn't stop puking. I hadn't been able to run fluids in several days so I thought I would try that in combination with all my other IV rescue meds. I was able to get a few hours of sleep before waking up still feeling miserable. I made it back to bed and was able to ride it out till my appointment.

Upon arriving at Hem/Onc I had a fever over 101 and was taken back to isolation. I was so sick and knew something was wrong. I was admitted to the hospital. That was the 2nd of November. Turns out I was in septic shock. Cultures grew in less than twenty-four hours. Which is extremely bad because it typically takes 36-72 hours for cultures to grow bacteria. One of the amazing ICU nurses from the PICC team came by to deaccess and then reaccess my port. The insertion points from where my needles had been leaking pus. She refused to reaccess, (this was the right call) which was probably the best thing. They were able to start an IV and I went back downhill again. Things started moving pretty fast and the doctors came in and said they thought I would need my port removed. Which I already knew my port would have to come out, they didn't have to tell me. I was happy that they made that decision early because if not I would have been in the hospital for several extra days. Thereafter, they got me in for emergency surgery to get my port out. When the surgeon pulled my port there had apparently been a lot of pus and infection surrounding my line that they had to scrape out. They had to leave the incision open to let all the infection get out and it was quite painful. The meds they gave me ended up causing all my labs to be off and caused my blood numbers to drop to half of what's normal. So I got two units of blood (Inserts shameless plug to tell you to donate blood because less than 7% of the world donates blood and if you ask me something is wrong with that!) After that is when things started to turn around for me! By Monday my blood cultures had been negative for over 72 hours and I was able to go into surgery again to get a new central line placed.

I was discharged Tuesday and was able to vote for the first time that same day! We stopped on the way home from the hospital. I was on antibiotics for two and a half weeks following my hospital stay and these antibiotics also made me very sick. Even more so than the meds I was given in October. I got better for a little while but things haven't been the same since and eating is only continuing to get harder. I haven't had anything substantial to eat since Sunday. It's very frustrating and I feel miserable. All I want is to finally get better but these blows just keep on coming. I know I can make it through all this because I have in the past, but it's still difficult being down in the trenches even if you feel like you know what is ahead. I'm used to feeling miserable all the time, but each day I wake up feeling miserable is another day spent in pain when all I wish is to be feeling something so much more.

School wise things are going great! I've made some wonderful friends over this last semester! I was able to get caught up in all my classes fairly quickly from while I was in the hospital and I ended the semester with great grades. I got a 97 on my biology final and I was super happy about that. I am very happy that finals week is over and I can now relax and enjoy this break over Christmas. There's only a week till Christmas Eve and I am so ready for all of the festivities to begin! We will be flying to see our Dad in Iowa the day after Christmas so we will be in the midst of the holiday travel! We hope for smooth travel days and snow because living in the south we don't get to experience that very often.

To The Teenager Recently Diagnosed With a Chronic Illness

To The Teenager Recently Diagnosed With a Chronic Illness,

         I know it was quite a shock to you, having been thrown into the world of chronic illnesses. I bet the first day you woke up sick it never crossed your mind that you wouldn’t get better, but soon days, weeks and months went by and your health never changed. It seemed like you would never get well again.

         You probably went from doctor to doctor to try to figure out what was causing havoc inside your body. If it was anything like my fight, you spent months trying to find a diagnosis. Suddenly your days will be consumed with hospital stays, doctor’s appointments, medications and procedures. However, don’t let this become your life because it’s not your life.

         Cherish the days when you get to enjoy your teenage years. Take the opportunity when given to go out and enjoy the typical teenage milestones such as Friday night football games, high school, prom and parties. You won’t get to experience many of these events again. These are going to be the days that help you carry on this fight. When you’re at your worst and it seems like nothing will ever get better, you’ll want to remember the times when life was at it’s highest because those days will show you life does get better.

         Amidst the failed treatments, painful procedures and hopeless nights you’ll find that this rose surely has its thorns, but it also has its beauty and you can’t let the thorns of this life distract you from the beauty lying within it. No matter what type of chronic illness you are facing ,this fight will be difficult beyond compare. There will be days when the symptoms plaguing your body will be too hard to bare but I want you to know you aren’t alone.  Many other teenagers out there in the world, including myself, are facing the same struggles.  I know just how hard it can having to fight your own body like it’s a civil war, but I know you will be able to do this. I believe in you.

From,

Michaela Shelley

A Chronically Ill Teenager

What If It Were You?

What if it were you scouring the Internet?

A search for the mystery inside your broken body

An answer to the aches and pain

A type of pain that Band-Aids and kisses couldn’t fix

What if it were you who knew something was wrong

But not even the doctors were sure

If they didn’t have an answer who would?

Did they even believe this pain was true?

What if it was you fighting for your most basic right?

The right to life

Is that even fair?

Truth is nothing ever is

What if it were you enduring the unimaginable?

Endless pain, Numberless needle pokes

Helpless doctors, Countless procedures

All while being defenseless against your own body

What if it were you crying,

Fighting,

Dying,

Trying to remain above water.

Could you do it?

Just for a moment,

Try to picture it being you.

Try to picture being me.

Prom, Hospitals & High School Graduation

Almost a week and a half ago (May 26th) I was able to walk across the stage an receive my diploma! This was a huge accomplishment no one was sure I would be able to make happen but it did and I am so happy for that!
The story is fairly long and complicated but it goes like this...
My Hickman line broke on April 18th. We weren't entirely surprised this happened because I had that current line placed for more than a year and a half! We knew it would break eventually we just didn't expect it to be then. We called the surgery team who asked we go down to the ER to be evaluated. They told us my line could be fixed but we knew with the type of line I had it was not repairable. That's the bad thing about having a Power Hickman line. In the ER we dealt with a resident who wasn't the brightest man in the world. He said well it's broken but it's not THAT bad... He said I wouldn't need surgery and as long as I used alcohol wipes it wouldn't be an infection risk. To which I freaked out and asked for my surgeon to come down. Finally my surgeon got there and said I did need surgery to get it replaced. However, they couldn't get surgery scheduled until a week later! One side of my line worked to run TPN but the other was broken and couldn't be used. So we had to make do until then. The night of surgery I spiked a very high fever. However, upon arriving for surgery I didn't have a fever so they continued with the surgery as planned. I had a double port placed and went home immediately.
I was able to attend my Senior Prom which was only a few days after surgery. Although my chest was bruised and I didn't feel the greatest I was able to enjoy and awesome night with friends!

 Michaela (me), Amy (mom), Kiley (sister)

Kiley, Carson, Michaela (me), Emiley

Just a few days later the surgery team called and said the Hickman line that was removed had grown gram negative bacteria. I was placed on oral antibiotics and that was supposed to be the end of that. However, as I began to finish antibiotics I started developing low grade fevers and began to feel unwell again.

I woke up around three am on Sunday, May 22nd and I wasn't feeling quite right. Worse than I had been feeling all along. I had a horrible migraine and my body ached all over. That feeling is typical for only being a few days post- IVIG treatment.I already had all the meds I could get so I tried to get back to sleep but it just wasn't happening. I got up out of bed and decided to take my temperature just to see if there was something going on even though I didn't feel like I had a fever. Well sure enough I had a fever of 101.2 which meant I needed to get to the hospital. We finally got there around six in the morning. Cultures and other blood work was drawn so we were going to wait and see what came back. Most of my blood work looked okay. However, I was not doing well. My blood pressure kept dropping more and more each time they took it until it got down to 89/33. That's when they became very concerned. I got extra IV fluids and was admitted to the hospital.

Although my blood work looked okay I continued to fall into the path of very low blood pressures, exhaustion, and pain as we waited for cultures to come back. Surely enough at the 48 hour mark my blood cultures had grown gram positive rods which meant I had an infection in my port. This time it was an entirely different infection than what I had before! I was upset and angry but we continued to push on hoping I would be out of the hospital by graduation. I was feeling a little bit better but there was still so many issues with my blood pressure that no one could figure out. It was starting to come up a little bit but it still wasn't great.

My hospital is unable to give a day pass to allow the patient to leave the hospital for a few hours so if I was going to graduation I had to be discharged completely. The night before graduation no one was sure I would be able to make it but I reluctantly asked to leave the hospital so I could go walk across that stage just like all of my friends.

Child Life had a nice surprise for me when I left.

Although I felt horrible I was let go on IV antibiotics and some extra medication to help me get along. We ran out of the hospital real quick as I was only discharged a little less than four hours prior to the time I needed to be at graduation. However, we made it and I was so excited! After everything I have been through I was able to walk across that stage and close all of the struggles and heartbreak I have been through over the last four years. I worked extremely hard trying to complete make up work, coming in before school and staying late to receive extra help from teachers for my missed work, the extra hours spent with my homebound teachers, and just trying to make it out of bed to school in the morning even when I felt way too sick.

I did it!! I will be off to Converse College in the fall of 2016.

How My Illness Has Made Me Grow Into Something Greater

I'm currently writing a scholarship essay on how I have grown as an individual throughout my last four years of high school. There are so many mixed emotions going through my head, as I think about the last four years of my life. I decided to sit down and re-read the blogposts I have written throughout these last few years. As I have started to look over these posts I am slowly beginning to process what I have been through over these last several years.

Having this blog has been one of the best decisions I've made in my life. I am very thankful for the person who encouraged me to pursue this avenue because I realize I have a story to tell. When I started my blog I didn't share the link with too many people. Only a handful of people, even knew the blog existed in the first place. I don't think my parents had the link for a while! For about a year and a half I kept like this, until one day I slowly started posting links onto Facebook. I shared a post that picked up quite a bit of attention, because of that, I allowed myself to become more vulnerable when it came to uncovering the truths I've kept secret.

I was only eleven when all of my health issues became increasingly prominent in my life. For the longest time we couldn't figure out what was wrong with me. By the time of my freshman year rolled around I had a feeding tube shoved up my nose. During my sophomore year, my entire digestive tract had shutdown and became clinically diagnosed with Mitochondrial Disease. My life was completely altered and everything I had shattered into a million and one pieces. Like a puzzle I had to learn how to pick up the pieces and put everything I had back together. As I began to put my life back in order, I also began to write more frequently. When I read those words I once wrote shows me how quickly I had to grow up. I had to make a decision as to, whether or not I was going to let the life I must live defeat me.

As you can tell I decided that the life that was forced upon me was something I could overcome. It took some time but I have found my happy place in writing. I'm no longer that scared fourteen year old girl anymore. Some how I found a voice even when I couldn't find the words to speak about how I felt. The essay I have written for the scholarship is down below. It took me a while but I found a way to share with the world that my life has taken so many twists and turns, and how I was able to grow out of my situation.


Essay below:

            I have never been able to fully comprehend why my body has chosen to stage a civil war. It has become an uphill battle in a war I will never be able to win. How can anyone win a war against his or her own body? When the war first started I was a scared fourteen-year-old little girl who went from a life of high school, soccer, and friends to a life of surgeries, pills, and doctors. Almost four years ago the fight for my life began and this fight has changed me in more ways than I could have ever imagined. My body might be growing weaker but this passion for advocacy and awareness is only growing stronger.

            My health declined in my freshman year of high school and I had a feeding tube placed because my body was no longer able to tolerate the food I ate. Imagine not being able to eat Thanksgiving dinner or even your own birthday cake… During this time I struggled greatly as I adapted to my new lifestyle. I was shy about my disease mainly because I felt that if nobody talked about it then maybe I could pretend like it didn’t even exist. It worked for a little while and I felt normal but as my health progressed things were no longer as easy to hide as they used to be.

            The doctors didn’t believe my condition would progress as it did with my brother, but it did. The war raged on in my body and it was time for another battle. For months I struggled both physically and emotionally. I was diagnosed with Mitochondrial Disease like my brother. Mitochondrial Disease is a degenerative condition that has no treatment or cure. I became scared thinking about the struggles my brother faces, knowing I too would be following that same line. This wasn’t supposed to happen.

            Prior to my diagnosis I spent many hours volunteering for a cure to save my brother, but it became different when it was myself. It became more personal, so I chose to become a voice for teenagers with chronic illnesses. I know what life is like for sick teenagers and when I noticed there wasn’t anyone who was speaking out on our behalf, I wanted to be that person.

            I started a blog (ChronicallyAwesome23.blogspot.com) to share my story during ninth grade. With this blog my friends began to understand the daily challenges of my life. At this time I also began speaking engagements, lobbied at the State House, and started spending time connecting with others teens like myself.

            Shortly thereafter in March of 2015, a post I had written for a special needs forum changed my life, when Huffington Post contacted me to be featured on their website. Since then I’ve written eight pieces for their website and have connected with other newspapers both international and domestic.

            When I first got sick I was closed off, but I’ve learned to be open and outgoing, as I’ve become comfortable with my illness. I want to continue my work with my advocacy efforts and hope to pursue my passion for a career in journalism to continue to share the stories of others and myself. If you asked me today who I was in ninth grade I don’t think I would be able to recognize myself. These last four years have changed me for the greater good and I couldn’t be any more proud of the person I have become.

The Color Green

            I used to hate the color green. As a child my favorite color was always blue or purple. To be honest, I thought green was an ugly color. However, my mind quickly changed when my brother was diagnosed with Mitochondrial Disease. The color green became a symbol for the fight to find a cure. I soon realized just how important a cure was for my brother. So I chose to set out to find a cure to save my little brother, but little did anyone know I would need that cure for myself as well.

There are some memories that are etched into your brain like an Etch A Sketch. However, unlike an Etch A Sketch you are unable to erase these memories. You can’t just shake the memories out of your brain and hope the page will be cleared away. Sadly, that’s not just how it works. On April 16^th, 2011 my life changed in one short moment and nothing has ever been the same since. This will be a day that is forever etched into my brain as a memory, but it’s certainly not a good one. No matter how hard I try I can’t get that day out of my head. Nothing has ever been the same; that day will always be written down as the worst day of my life.

On that Spring Saturday in April my youngest brother, Tyler had a seizure in my arms. I was only twelve. I remember screaming for help, thinking that this was all my fault, and the worst of it all was seeing my nine year old brother, Brycen see his brother being carried out the door seizing. Brycen had never seen Tyler’s first seizure, so this was all new for him. We didn’t even know if our brother would survive the night. He didn’t handle it well but I couldn’t say I did either. We both collapsed to the floor never letting go of each other. All he did was scream. All I did was cry. We were all alone. We laid there for what seemed like hours. I could hardly console him, much less myself.

Tyler survived the night, but he was unconscious laying in a bed in the Pediatric Intensive Care Unit. His little five-year-old body received a beating. Tyler turned blue within minutes of my parents rushing him out of the house. We didn’t call an ambulance because at the time of his first seizure it took well over an hour for an ambulance to reach our house. Tyler didn’t have that time. He began to turn blue within a matter of minutes after he had left our house. My parents were able to receive help at the fire station but that poor boy continued to seize. He spent over two hours seizing on that night. Tyler spent the next twenty-four hours unconscious, but he pulled through without any lasting effects from the seizure.

A picture of Tyler and I taken on New Years Eve 2010

            The next week Tyler was diagnosed with Mitochondrial Disease. Mitochondrial disease is a degenerative and terminal, genetic disorder. I cried. Our family knew a little boy with Mitochondrial Disease. His name was Zach and although Zach was only three he was so sick. He passed away two months after my brother was diagnosed.

Thereafter my life began to change even more. It happened so fast and I lost all control.  The perfect happy life I once had no longer existed. It was like my life was sucked up into a tornado, spit back out again, and shattered into a million and one pieces. I too became sick. The first time it happened, I had to stop eating all food. Yes, all food! Imagine living a life without Halloween candy, Christmas cookies, Easter eggs, and even your own birthday cake! I received a feeding tube. I got better, I was so thankful. I thought maybe this was it. I knew I could manage this. It was not even close to compare to what my brother goes through everyday. I was okay. I found my new normal, although life was anything but normal.

June 2012

Nine months after I put my life back together it shattered again. The catch was this time it would be so much worse. My feeding tube was no longer working. Everyone told me this would never happen! They never believed I would wind up in the same position as my brother has. I cried and cried. The strain mentally was almost as bad as it was physically. I knew what all this meant. I already knew what I would soon be facing, because I’ve seen my brother face this fight. I think that was the worst part, knowing what was before me. That little fifteen year old me was so scared.

September 2013

Just a few months later Mitochondrial Disease stormed its way into my life, again. However, this time it was pertaining to myself not my brother. It became official. The top pediatric specialist who treats one of my diseases told me I would never get better and even if I did I would still be very sick and rely on tubes to keep me alive. How can doctors tell a person there’s nothing they can do to make things okay again? Like dominos in a domino line my organs have started to fall down and fail one by one. Organs failing right in front of your eyes and there’s nothing you can do about it. No treatment, No radiation, No chance of remission, No surgery, No magic pill, and worst of all No cure.

So here I am two years later still breathing, still living, and still fighting. I’ve rebuilt my life to the best of my abilities. I have chosen to live my life just as any other person would because, just like you I don’t know what tomorrow will bring. Maybe not today, but maybe five years from now what if the doctors were able to find a cure and they would be able to fix me? If they had a cure I would be able to have a whole future ahead of me and that’s a lot to think about.

February 2016

When I set out to find a cure to save my brother I never expected I would have all these opportunities available to help me do so. I’m still out there searching and fighting for a cure. It’s not only about my brother anymore. It’s about the child who is born every fifteen minutes who will develop Mitochondrial Disease by age ten, the child who lost their sister or brother to the disease, the parents who are struggling to find a diagnosis for their child, the mom who is unable to take care of her four children because she is too ill, the teenager who is fighting to make it through high school despite their illness, and anyone who is still pursuing their dreams even though their body is failing them.

The color green isn’t so bad anymore. It is now one of my favorite colors next to blue, of course. Mitochondrial disease has become a blessing and a curse. Without Mitochondrial Disease I would have never had some of these amazing experiences I’ve been gifted with, but I also see it as a curse as I see both mine and my brother’s bodies slowly shutdown on us. My life may not ever have a happy ending but it’s not about the happy ending it’s about the story and if you ask me I think it’s a damn good story.