That One Sick Girl

When I started this blog three years ago I never expected it to turn into what it has. I was, quite honestly, merely looking for a way to let out all of the pent up anger I had lurking inside of me. I was so frustrated with my becoming sicker than I ever imagined I could be, and I wanted to let it go. To put it plainly, I was done. I chose to start writing because it has always been good therapy for me. It allows me to passionately express my inner most thoughts and intentions in a healthy way. In a sense, writing is, to me, what running is for a runner (shout out to my buddy Noah Camp!). It calms me and allows my soul to rest. It is second nature. All of that being said, I had certain expectations when I sat down to write my first blog post. As I previously mentioned, I expected to find rest. I expected to lose my bad attitude. I even expected to gain new perspective. However, I did not expect to completely surrender my writing to what God had to say through me. This blog has be...

It has been a while since I have shared my story, and given that it is Feeding Tube Awareness Week, I feel like now is the time to do so.  I'm not really sure how or where to start, so bear with me. As a baby, I was pretty puky to say the least.  My mom tells me stories about how I would vomit any time I would eat, and all the doctors would say is that all babies did that.  Of course, my mom didn't really believe that all babies projectile vomited every time they ate, but she was nineteen and just kept hearing that I was fine... she didn't know what else to do. Jump forward a year or two. While I was a toddler, maybe one or two, it was anything red.  If my mom even gave me a red apple I would throw it back up.  Then at three, it was always, "mommy my tummy hurts."  Every. Single. Day. That's when she first started taking me to doctors. Lets jump forward in time again. I'm in school now, and I'm always sick.  I remember missing countless field...

Wow... I am almost lost for words when I think about all of the love and support being shown to me by complete strangers. Let me just say, I can definitely feel your prayers being lifted up to our Lord in Heaven, and, little by little, He is taking away my fears. As far as my health goes, I'm still in pretty bad shape. I drove back to college last night, and the pain in my hips and lower back is definitely worsened today. I'm hoping that will get better with time and rest.. We have yet to hear about my biopsy results, so I have no new news as far as treatment options and the official diagnosis of Behcet's Disease, but I'm hoping those results will come sooner rather than later. When they do come, the plan is to start a drug known as Remicade. This drug has to be infused, so I will most likely need a new central line put in, but, frankly, I'm okay with that because my veins are so tired. The simple act of drawing blood often takes 13+ sticks with no success. I am r...

As I sit here and think about all that I want to say in reference to the year 2015, I can't help but think it cliche to be writing about my year at all, but, fear not, I have my reasons. 2015 was a year of many firsts.  I had my first ambulance ride, my first ICU stay, and my first actual diagnosed blood clot.  I went into septic shock for the first time, and ran fevers for 5 consecutive days for the first time in my memory. Apart from medical firsts, I have also had a few life firsts during the year of 2015.   I moved away to live in a dorm for the first time, and I also drove across-state (to and from school) on my own. 2015 was a year of many hardships. My health began to rapidly decline around six months ago.  If you know me at all, you know that I have a chronic illness.  I have been sick my whole life, but I can usually manage pretty well from a pain standpoint.  My symptoms have gotten so bad that I sleep 90% of the time in an...

When I lost my grandfather in August I wasn't aware of the legacy that he would leave me.  I hadn't had time to process all that he had taught me yet, and, what I did know about his life, I wanted to be selfish with. Grief struck hard.  It has taken everyday since the day that we lost him for my family to rebuild what my grandma affectionately refers to as the Nation.  We have had to learn to live with the hole that was left upon my grandfathers passing, and, though we will always ache for his return, everyday gets a little easier.  I think a lot of that is God's doing. After a lot of thought, and some beautiful words from my grandmother, I am ready to share about the legacy that I have you all wondering about. In faith always. What does this mean, you might ask? Well, it started out as a loving reminder between my grandparents to live for Jesus in everything that they do.  As you have probably guessed by now, it means so much more to me now than it ever...

I want to post something different from anything I've ever posted before. It has nothing to do with my sick story, but everything to do with my story. Please bare with me... Around 2 1/2 years ago my family went through one of the most pivotal moments in our lives. Things were really really bad. My step dad, who is an alcoholic, had been drinking nearly every chance he got. He was a mean drunk. I feared the nights because that was always when he was at his worst. Often times things would become physical and he would hurt my mom, myself, or sometimes my brothers. My mother took the worst of every confrontation and I would find myself coming to her aide much of the time. I hated him, but I always held off on calling the police at my mom's request. I was the protector in the house. I took it as my responsibility to break up fights and make sure my mom and little brothers were safe. This earned me a few bruises, but mainly emotional battering from my step dad. One night in ...

"Is not life more than food?" Matthew 6:25 This verse really struck a chord in me the other day and it made me wonder.... what is life? What is living? I'll be honest and tell you that I didn't really analyze things beyond that but I would like to now if only for the sake of something to do besides homework.  Yes, I'll admit that I decided to post right when I realized how much work I still need to do. Don't judge I'll get there.  ANYWAY... back to my question. What is life? (to whoever is reading this: it is probably best that you just stop now unless you don't mind senseless rambling... then by all means read on)  I have come to the conclusion that life can mean different things to different people.  As many of you know, I do not eat like a normal person... or when I do I throw it all up. (yummy) Hence why it was this verse that made me wonder and not another.  I'll explain.  So many people tell me that they would die without food... li...

Wow I never expected this experience with a feeding tube to escalate to where it is today.  In a few short days I will be meeting with a surgeon to schedule either a gj or j tube placement surgery.  Again... wow.  The doctors originally told me that I would be rid of this tube before school started. That didn't happen. Then I was told to give it a month. Nope. The dates kept extending until here we are four months later looking at permanent placements.  The thing is I wouldn't change it for anything.  Through every trial that my life has brought me I have learned something.  I have to believe that God will use my experiences one day to help someone else in the same situation as me. Life with a medical problem can feel very lonely sometimes.  You don't always have people readily available to talk to who know exactly what you are going through and you tend to get left behind when it comes to having a normal life.  I want to help show peopl...

Wow it's hard to believe it's been a whole two weeks since I finally got out of the hospital... Here is a little bit of an update.  During my last stay in Children's Mercy I was diagnosed with amplified pain syndrome which in general terms means that my nerves are overactive and misfire when my body is injured.  For example where a normal person would stub their toe and hurt for about 30 seconds then move on someone with amplified pain might get much worse pain that lasts longer.  It is believed that my gastroparesis and eosinophilic gastroenteritis are causing much more pain than they should due to the amplified pain.  For those of you who know what POTS or dysotonomia are this disease encompasses those and has the same characteristics but is a broader term.   Because of the new diagnosis I am now involved in an intense physical therapy and desensitization program to try and retrain my nerves to act normally.  So far there is no change in my abil...