That One Sick Girl

When looking for a title for any given post, I really have to think about the main thing that I want to share with you as my readers. I know that this title suggests that I might be talking only to those who have a chronic illness like myself, but that isn't the case. Sure, the idea for this train of thought may have spurred from my life experiences, but I wouldn't be a very good thinker (I've been accused of thinking too much way too many times to count...) or a very good writer if I didn't over analyse and expand on the initial thought.  Here is what I've come up with. Take it or leave it, but I think you should take it... (If it was appropriate to use emojis in blog posts, I'd SO have a winky face here.) Also, I promise I'll get to the point eventually. I'm 20 years old, I look 15, and I feel 80. This is the thought that has been running through my head for the last several months as the summer wore on. I work in child care when home from...

I get it. I really do. I'm a teenage girl who can't hold down food. I must have an eating disorder, right? Wrong. For you to completely disregard anything I tell you based on your made up notions about me is absolutely disgusting to me. I am your patient, and I have done nothing but prove to you over and over that I am not faking my illness. Honestly, I don't see how I could fake the extensive medical history that I have. If you had ever listened to a word I said, you would know that this has been going on since I was a small child. This has gone on for far too long. You've been in charge of my care during every inpatient stay for the last three years. When does it end? I'm really tired of your games. I don't need your snide comments, and I really don't need the self-hate that fills my head every time I've been around you. Did you realize that you make me feel like I am crazy? I literally spend two weeks undoing what you did in just one week lo...

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...

Admitting to fear has been difficult, but healing, in many, many ways.  It's come to a point in this crazy life of mine, where I have to completely rely on my faith in God. I just can't do it on my own anymore, and that is okay. I have been flaring for several months, and it's finally come to a point where I feel as if all I want to do is cry. I'm afraid for myself. I'm afraid for my life My pain is at an all time high, and I continue to gain new symptoms pretty regularly.  It's exhausting. In May I started getting vasculitis in all of my IV sites which caused blood clots.  I then needed to wear compression garments for several months. In addition, the new symptoms have brought forth a very frightening new diagnosis.  I must admit, though the diagnosis isn't yet official, I was almost brought to my knees in terror when I realized the seriousness with which things are headed.  We are 98% sure that my biopsy results will come back saying exactl...

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...