Monday, January 22, 2018

There Is No Hope

Four years ago today the doctors told me I had no hope - Damn, did I prove them wrong or what?

Four years ago I was frozen by the conversations we began to have about my future following specialized medical testing, however, I still understood the big picture. The consensus of the conversation went along the lines of the doctors agreeing with the suspected diagnosis of Mitochondrial Disease, like my brother. I have total digestive tract paralysis in nearly every section of my gastrointestinal tract - medication would not make a difference in the functioning of my gut, and surgical routes no longer became an option. They said I would be dependent on IV nutritional support for however long my body chooses to hold out due to the long-term complications of IV nutritional support in combination with the overall condition of my body. While all of what he said has proven to be mostly true, my body has continued to hold out fairly well. No teenager should be forced into conversations like the one my family had in 2014. Unfortunately, every single day teenagers just like me are being forced comprehend and decide how they will respond to the devastating diagnosis.

When the news dropped, every thought racing through my head filled me with fear. For a little over a year prior to that day my life already felt as though it was crumbling underneath me. Everything I had built myself to be had began to had fallen apart. The news that the doctors told me was the final straw that broke me. Why did this have to happen to me? It wasn't supposed to be me. It's not fair! I wished I was an average teenager with an average teenager life. I wanted to be me, again. The me who played soccer every weekend, me who was an honors student, the me I was before I got sick... I was so angry with God and everyone even if it wasn't their fault. I did everything that was asked of me, I sat there and I took it. I stuck it out through all the scans, all the needles, the surgeries, the fifteen million medications, fatigue, sleepless nights in the hospital and the earth-shattering pain that seems like it will never end.

The days were long and each conversation we had with the doctor's left me feeling defeated. Even the doctors didn't have hope that things would get better, so how could I? I thought it was the end of my world. I was a terrified fifteen-year-old girl who was scared out of her mind while trying to process a very adult-like situation. No one could blame me for feeling that way though, even the doctors said they didn't think of much could be done to help my situation. I walked out of the hospital that day with a blank expression on my face. I didn't cry, I didn't speak, none of us did. We were all still trying to process what was happening. We got home a few days later as all of this information set in; I cried myself to sleep. I knew it was bad, but I didn't think it would be that bad. The thought of it being this bad didn't cross my mind because stuff like this isn't supposed to happen to someone like me.

It is only now, years later when I can truly understand how far I have come since they thought I had no hope for a future of good quality. That doctor told me there was no hope but he was so wrong. I'd like to think I am filled with more hope now than ever. I realize each person has a different mindset regarding the concept of hope. Maybe that doctor and I had our eyes set on different hs. His idea of hope was that one day he would be able to restore my broken body. He had hoped I would get the chance to return to "normal" or whatever that may look like after going through a serious illness.

However, my hope is much bigger than a doctor saying, "I am sorry, there is nothing we can do." My hope is larger than life. My hope focuses more on being thankful for everything that I am, rather than everything I am not. I changed. A serious illness does that to people. The emotional scars leave bruises that will never go away. I am not the young girl that I was before I got sick. I am a writer, a big sister, a photographer, and a college student. My hope for nothing more than to get back to living. I don't care whether or not that idea of living is filled with fifty million medications and needlesticks as long as I can use my life to reach out and fight - not only for myself but for others who don't have that chance. My very last hope was and still is to advocate, speak out, lead and preach it. As Matthew West said in a song of his, "Because if not us then who?" So Lord, let it be me if you must. There are hundreds of terrified teenagers like me, who cry themselves to sleep as pain stretches over every inch of their failing body. Let my life be the reason that our society wakes up and makes a difference in how we support teenagers with serious illnesses.

Now more than ever my hope is roaring like a lion.

My hope is in the hands of God.

Monday, November 6, 2017

It Wasn't Supposed To Be Me

            My youngest brother, Tyler, was always known as the sick one in our family.  Tyler was born seven weeks premature. He was a tiny little thing but relatively healthy. The doctors promised Tyler would lead a normal life once he left the NICU. They were wrong. Shortly before his sixth birthday Tyler was diagnosed with a terminal, genetic condition known as Mitochondrial disease. This disease has no treatment, no chance of remission, no magic pill and worst of all no cure. It was for this reason our family friends often labeled Tyler as the sick kid in our family. It was true, neither I nor my other two siblings had any obvious signs of the condition. Because of his health, I grew up believing myself to be his caregiver. I held onto this belief until my health collapsed shortly after Tyler's diagnosis. They didn’t need to say a word; the look on their faces was more than enough. I felt as though my life was sucked up by a tornado, spit back out and shattered into a million and one pieces. On that day, my belief took a new shape. I no longer had the mindset that it was not supposed to be me. After I cried it out, I picked myself up and forced myself to believe I was going to get through this with the help of my home team.
           That was until my health began to worsen around the time of Tyler’s diagnosis. At this time, my health was never made a priority because I always felt bad to complain when Tyler was often in and out of the hospital for weeks. To be diagnosed with Mitochondrial disease the patient should have at least three organ systems that were either failing or working inadequately. I did not yet meet the criteria, so the doctors brushed it off as nothing too serious. By 2012, my body began to send itself into allergic reactions for what seemed to be no reason at all. I was unable to maintain my weight on my own and puking was a regular occurrence in my life. Procedures revealed I did not have one of the diagnoses my brother faced. While this was a huge relief, it also left us without any answers as to what was making me sick. Since I didn’t have that diagnosis the doctors told us whatever was making me sick was likely not related to my brother. Little did we know that was anything but true... To control the allergic reactions the doctors placed a feeding tube to provide my body with unflavored medical formula made of the most basic nutritional components. Almost immediately, the allergic reactions began to slow. It was such a relief to know that we were making headway in figuring out how to fix me. I knew there were many others, my brother included, who were not as lucky as I was. My beliefs shifted from questioning why this would happen to me towards being thankful I was one who the doctors could help.
            I thought I was able to cope with this new normal, but my world fell apart once again when it came as a shock to us that my health was deteriorating. Four months later, the doctors reassured my mom and me by saying they never foresaw my health progressing in the way it had. In a weird way, it made me feel better knowing the doctors were just as blindsided as I was. This time there would be no happy ending. This time it was for real. I could no longer believe that the doctors could fix me. I noticed my beliefs altered as I went through these hills and valleys in my life. I had to learn the hard way that not everything in this world will turn out like you believe it should.
            A few weeks prior to the end of my freshman year of high school, I had another major surgery. Despite the complexity of this surgery, it was believed that I would recover well. Sadly, that never happened. Strangely enough, I ended up in a worse position when I came out of the operating room versus when I went in. Almost immediately, my mother caught on to the physical cues before I had to say a word. My mom already knew what to look for because she had previously seen it in my brother. Over the summer my organs began to shut down. I weighed less than ninety pounds, my immune system was attacking itself, my autonomic nervous system began to fail, and my digestive tract became paralyzed. To say I was falling apart was an understatement.
            I grew up believing the doctors knew all the answers. I quickly learned that belief was anything but true. My parents sought after some of the best doctors across the globe and all of them apologized to my parents because they had nothing to offer us. As if it were any consolation, these doctors told my parents one day they hoped they could save kids like my brother and me, but for now, they didn’t have the funds or tools needed to provide us with treatment options, much less a cure. Our geneticist told my parents and me medical research was not far enough along to help us. We were another family she had to inform of the heartbreaking reality: Science wasn’t smart enough yet to save us.
            Being the good parent she is my mother would not accept this. Day in and day out she would plead with us to see one more expert across the country, to comply with taking our medication regularly even when it made us sick, to consent to another clinical trial in hopes that we would get a better quality of life. She would tell us to never give up because we don’t know what promising medical breakthroughs were right around the corner. I have never figured out if my mother still believes there is a way to save us out there, but I know it is not easy for her to know that two of their four children will likely die from this disease.

            My mom is the reason I have allowed my beliefs to take on a new form. Without her I would still be beating myself up over the fact that this wasn’t supposed to happen to me. Once I accepted the fact that this happened to me, I was able to stumble upon some newfound growth that has led me to my current beliefs. I came to the realization that no one in the world is able to tell you what is going to happen to you today, tomorrow or the next day. Honestly, if my family had listened to everything the doctors and other healthcare professionals have told us then I would have never been able to walk across the stage at my high school graduation. My little brother, Tyler, would have died before his fifth birthday. I would not be living my days out with a higher purpose to ensure that no teenager, child or adult will ever have to listen to the doctor say, “I am sorry, there is no treatment, no magic pill, no surgery, no chance of remission, and worst of all no cure.”

Saturday, September 16, 2017

I Am From Poetry

These last several months have been pretty earth-shattering in my world, to say the least. I have so many words I want to say to the world but when I come to sit down to write I realize I have none. Life has definitely left me speechless but today I was finally able to let all the stress and worries leave me and just write. If I did anything successful today it would be that, so here it is...

I am from a life where nurses become your best friends and the whirl of IV pumps lull you to sleep.
From a series of never-ending hours in hospital waiting rooms and cold, sterile hallways.

I am from brown eyes that haven't seen far more heartbreak than one could imagine and tear-stained pillows that have received soul-crushing news.

I am from a scared teenage girl whose heart rises each morning in search of a better day.

I am from a belief in which I know I will never fight alone.
From a place where we put all our faith in the Big Man upstairs, from the taste of victory upon finding joy amidst the pain and from a life where laughter cures all.

I am from a kick-ass support team where hope is the only thing that matters and a family who isn't going down without a fight thanks to a Mom who never gives up.

I am from the moments in which I realize the most amazing gift of all is this thing we call life.

Monday, February 20, 2017


"Many places I have been, many sorrows I have seen. But I don't regret, nor will I forget all who took the road with me." - Billy Boyd

When I was eleven my brother was diagnosed with Mitochondrial Disease. A degenerative, genetic condition that has no treatment. When I was fourteen I was diagnosed with a disease that affects less than 45,000 people worldwide. When I was fifteen I was diagnosed with the same disease that is claiming my younger brother's life. 
Originally, I was lost and scared, but I found my sisterhood among a group of mostly girls connected through social media. We all have different diagnoses, different stages of treatment (If there are any for our specific diagnosis), different locations across the world, but the one thing share is the sense of mutual understanding. There is nothing more special than being present with someone who knows what's wrong before you open your mouth. Even though, I have never met many of these girls in person I have shared more of my fears and worries with them than I have shared with my own parents. They are more than my online friends they are my family.

I still remember the nights following my return from traveling the number one specialist for my disease. After two surgeries and several procedures, the doctors walked into my hospital room and told my parents he was sorry but there's not much of anything they can do. He told my parents I would be lucky if I ever got better. In fact, I would probably only get worse. My parents didn't cry and I didn't cry. We were all numb and exhausted. I didn't say a word on the eight-hour drive home, but once we got home I called my best friend, Christine from our close knit group and cried to her until we both fell asleep on the phone together. I was devastated and angry but not for myself. I was devastated for my parents who now had to worry about not just one of their children loosing this uphill battle, but two of them.

Christine and all of the other girls have helped me through my darkest moments and cheering me through my greatest accomplishments. I believe that's the most important part of being in a sisterhood: Not only being there when life couldn't be any better but also being there in the darkest of times. Together we cry, we laugh, we pray, we celebrate, we hope, and we dream. We are all deep in the trenches fighting to stay alive, we are scared and suffering yet we still make time to lift each other up. We celebrate the success of the girl who's cancer went into remission while we pray for a miracle of our own. It's about being humble and not make everything about yourself. So many girls have come and gone since I joined this "sisterhood" and I am privileged to be one of the originals still breathing, still living and still fighting. Our lives have been anything but perfect but we have made something beautiful out of the imperfections.

Click here to see pictures I have taken with these "Sisters" that I have been blessed to meet in person.

Tuesday, January 3, 2017

Let Your Children Ask Questions About Me

While boarding a flight home from Iowa today with my siblings a little girl who couldn't have been much older than four was stopped in front of my seat. She stared at me for a second and very loudly asked her mother "Why does she have to wear that?" [For those who don't know I am immunocompromised and I have to be careful (especially during cold and flu season) to limit the contact I have with germs because my body simply can't fight off the simplest of illnesses. So I often have to wear a hospital mask in public to filter out the germs in the air I breathe. For me getting sick could very much mean a several day hospital stay. Plus I just got out of the hospital less than two months ago, so I'd rather not go back anytime soon.]
The mother was obviously mortified as most would be, but she was silent when (most parents I have met very quickly shut their child down from asking such questions.) I chose to take the opportunity to speak. Using an age-appropriate description I explained I have a disease that makes it hard for my body to fight off the germs I come in contact with so I have to be super careful and do everything I can to make sure I don't get sick.
The little girl was satisfied with the answer, the mother was relieved the question didn't make me upset and told the little girl that's exactly why we need to wash our hands often and keep our germs to yourself.
The point I am trying to make is to let your children ask questions. Don't force your child to be quiet and pretend as those your kids shouldn't know about "people like me." One day maybe your child or your grandchildren could be in my situation. People like to ignore issues simply to pretend as though those problems don't exist because they don't affect your family. Children are only curious and want to learn. Most adults wouldn't dare to ask a similar question for fear of hurting one's feelings. It's time we get comfortable with being uncomfortable.
Most of those like myself don't mind the questions because it's just another part of our everyday life. As for me and myself, I'd rather other people understand my life because it allows them to be more accepting and empathetic to my situation. It shows those people that I too am a real person just like one of them even though I've been diagnosed with multiple rare diseases. Plus the more people who know about my disease means the more awareness, education, research, and advocacy can be put together so we can be one step closer to a cure!

Saturday, December 17, 2016

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.

Wednesday, August 10, 2016

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.


Michaela Shelley

A Chronically Ill Teenager

Thursday, June 9, 2016

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,
Trying to remain above water.

Could you do it?
Just for a moment,
Try to picture it being you.

Try to picture being me.