That One Sick Girl

I may not know you yet, but I am praying for you everyday. I pray that God gives me the strength and you the patience that it takes to handle someone like me. I pray that you are courageous and steady in your ways. I pray that you are happy with who you are, and that you strive everyday to be better than you were the day before. I love you already. I think a lot about our love story and all that we may encounter on our journey together. I don't think that you will be expecting me, but that's not a bad thing because we will make it work. We will always make it work. We will serve God together as a family. I love you already. You dream of a woman in white who you will go on many adventures with. I assure you that we will have outstanding adventures, but there will be many trials too. I'm stubborn, and we will butt heads. The reality of not having biological kids will be a shock to you, but I won't blame you for waivering in the first moments after I tell you. We ...

Well, lets be honest this is just a mess. Guy's, gallbladders are just mean sometimes, however, it's acting up has made me realized just how blessed I am. I have some of the best friend's, an outstanding family, and this one guy that I like to call my boyfriend sometimes; when he is being sweet that is. Otherwise he is just another pain in the rear end [don't worry honey I'm just kidding].... Oh yeah and my spunky nut of a dog! Anyway's, I have a bit of a public thank you that I would like to share with you all. Mom, thank you for always praying for me, even when I don't ask. I feel them. Thank you for being my best friend, my disciplinarian, my rock during the times when I thought that my world was falling apart. You have protected me from the world, and now you are serving as a guide to slowly allow me to venture out into that world I once needed so much protection from. Thank you for loving me when I'm being your "good kid" as well ...

Growing up, I always felt a little bit different. I looked at myself as if I were another person; like I didn't really know myself.  I was the outsider looking in. As I would stare at my reflection, I often found that I truly didn't understand who or why I was. Don't get me wrong, I was an active and relatively happy kid who was involved in as much as any other child: soccer, dance, gymnastics, volleyball... I just found myself to be emotionally distant from my peers when it came to getting along with them. Things seemed so easy for them in areas where I struggled everyday just to try and understand why they did silly things like smile for no reason in particular. I had friends, but I questioned whether or not they actually liked me. Were they just being nice because they felt bad for the socially awkward little girl? Were they just taking advantage of my loyalty and careful, mother-like tendencies. The anxiety was crippling. What could I do? I had no idea who I even was ...

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...

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...

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...

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...

Have you ever been told that you can't judge a book by it's cover?  Yes? Then how can you judge me by mine? Tell me that. I know that I have been focusing a lot on not looking like I feel, but this is important to me.  It really bothers me when people tell me that I look good (meaning healthy), and it makes no sense to me that I am judged by how I appear.  I know that the people who are saying how good I look mean it to be a compliment, but.. it's definitely not one. Why can't you just ask me how I feel? If you did ask, you would know a different story from the one you have made up in your head about me.  You would see how hard I have to fight just to look half way decent in the mornings or to smile and be happy at any point in time. This cause... this awareness week.  It means so much more to warriors than just a chance to make our illnesses known to the general public.  It gives us a chance to share our stories.  It allows for you, the g...

People often ask me how I can stay so positive in living like I do, so today I thought I would share a little bit about what drives me.  I guess it's important to start by making one thing clear.  I have not always been so positive, and I can't say that I won't ever have another negative thought again.  My illness is invisible, and, thus, so are many aspects of my fight. One of those so called "invisible" aspects to my fight is actually not a what but rather a who. My mama.   Every morning when I wake up my first order of business is to get my medications together and my elemental formula (aka food) made for the day.  What if I'm in too much pain to get around that day? What if I am running late? What if I'm feeling lazy?   You guessed it.  Mom is always there to help.   Every week I have several doctors visits and/or emergencies to attend to.  Do I really have to go to the hospital alone?  Nope.  You guessed aga...

The dictionary definition of empathy is as follows: Identification with and understanding of anothers feelings, situation, and motives.  When I think of this in competition with sympathy, which can have several meanings, it doesn't seem right to me that there be any competition at all. I want empathy.... No, I need empathy.   To use the best definition for my purpose, sympathy means pity or sorrow for the distress of another. I don't know about you, but I don't like the idea of being pitied.  What I mean to say is that everyone comes to a point in their life where they need to be in contact with someone who understands the feelings and motives that go along with the situation currently underway.   Take life with chronic illness, if only because I deal with it daily, as the perfect example of empathy being far superior to sympathy in dealing with the situation.   When you're sick all the time, people who do not understand on a more intimate level ...

Monday July 14 marked one year to the day that  stopped tolerating any amount of food on my stomach.  I have always had GI issues but I never imagined my life how it is today.  If I'm honest with you and with myself I can only come to the conclusion that I have developed a patient identity.  Patient identity may sound odd to those of you who don't deal with a life altering illness on a day to day basis so let me put it plainly.  I don't know who I am anymore.  I can tell anyone anything that they want to know about hospital life and TPN and physical pain but as soon as I'm asked how I feel about it on a mental level, all I can bring up is numbness.  Unfortunately, I let myself become this way and lost any recognition of who I was a year ago in the process.  My therapist and I call this the patient identity.  I can't really begin to explain what this state of mind feels like...  I don't know how.  It's like I only focus on things...

I usually try to be pretty light hearted with my posts but now is not one of those times.  I have something pretty serious on my mind tonight and have been searching for the words to say.  To start, I guess I just want to say that though I may seem happy on the outside there is a lot that I deal with on a day to day basis that makes me anything but happy.  My therapist and I... yes, I have a therapist and frankly I don't know how I would function without her. But anyway, my therapist and I have been discussing emotions a lot lately and it has been brought to my attention just how much I shove mine aside.  I have trained myself not to talk or think about how I may be feeling.  I want to change that if even just for a moment... Every week when I walk into therapy, the session starts off with the question of how things are going both physically and emotionally. My answer? "Fine." Just about everything that my therapist asks is answered similarly and if ...

There comes a point when everything that a kid like me goes through becomes too much.  Today I have finally reached that point.  I'm so tired of hospitals and things are really beginning to get to me.  I want nothing more than to go home.  Take it from me the hospital is not a place of healing.  It's a place where kids rot.  It's impossible to get better because of the stress that being away from friends and family causes.  Mentally, it is a dungeon.  It causes a deep depression and more stress than is necessary.  Nobody deserves to feel like they are imprisoned within walls that are thicker than molasses... to be cliche.  And really, no one should have to.  I don't understand why anyone gets sick.  It's really not ideal for your social life and it honestly sucks... a lot.  Not knowing what is happening to your body can really bring a person to their breaking point.  I know that's where I'm at.  Last night w...

The most frustrating thing to hear are the words "I don't know" and unfortunately that's all I've ever heard.  All my life I've dealt with pain.  I have seen countless doctors who have given countless answers when in reality they have no clue why my body attacks itself.  I am at the hands of their mercy and have little to no control over my own life.  If you know me then you know how much I hate this.  I am the type of person who needs some sort of control over everything that I do.  When all I hear is that I'm a mystery it takes everything in me not to break into tears.  I still fail sometimes though.  I go through stages where I can do nothing but cry because I don't understand why this is happening to my body.  I put on a brave front at school or when out in public view but the truth is I struggle a lot.  My emotions are all over the place and I feel almost completely alone in what I a...

Here's the thing, I've been sick my entire life but up until now I hid behind the small amount of normalcy I had. When I started out this year I couldn't do that anymore and I'm gonna be honest walking into school on the first few days was hell. All of a sudden everyone was asking what's wrong with Tristan. Problem is nobody was asking me. I was a specimen to be looked at under a giant microscope and I could see EVERYONE looking. I felt angry and alone and also very frustrated. I understand that the tube is a scary sight but I don't really enjoy being treated like the lonely betta fish in its own bowl while all the other fishys get to swim in the crowd. And really, two simple words would have made it all better. TWO WORDS. "What happend?" That's all I needed to hear but practically noone would ask me. Trust me, staring out of the corner of your eye is not the answer. I may be a little weaker and I may eat from a tube now but I don't bite... wel...