Monday, December 28, 2009
Tuesday, December 15, 2009
I could apologize for the lack of my updates however my ever growing silence can be presumed as things were going so quickly that I could not find the time to post. The past few weeks especially God has been working in my heart and showing me what breaks his heart most. It has been an emotional past few weeks and I have found myself feeling raw at the feet of my savior. One could say this is the worst timing for something like this and as I walked around campus bawling my eyes out- I might agree. However, as I looked at those around me and the pain that was inside them I felt there is no good time to experience a pain that is so great for the people around me.
I find it un-canny that I can be so comfortable in a world filled with discomfort and I cannot continue to settle for the motions of the day. I am at a loss for words to describe what I have been feeling but it has been life changing to say the least. God is moving on our campus and preparing hearts of service and love. I continue to cling to the hope that he has placed within my heart and I am looking forward to serving the Lord.
I find that I feel so discontent sitting on campus doing what seems to be nothing in the grand scheme of things however I believe there is a purpose to this. I look to my Christmas last year and the things I looked forward to and was excited for and many of those have changed. I just can't find myself giving materials and my stack of gifts this year consists of just a few gifts- I find myself looking around the world to people suffering from AIDS and the pain of my friends and even people so close to home that are suffering with their loneliness and people here in the states homeless with no where to go. I find myself looking to them and feeling so helpless. I can't continue to walk this earth in my comfort while so many others are so uncomfortable.
This hit me smack dab in the face when I went to pray with the Nist family for their son who passed away from Swine flu. We prayed for a miracle and I believe the true miracle that was received was a spiritual one. The movement that was there was so high and the spiritual encounter so great... I cannot imagine losing a son, brother, cousin, nephew, friend so young... However I am able to worship a God who sent his son to die a brutal death. After that day in prayer I don't know if I am able to comfortably say I can just worship God...
This holiday season has been intense for me to say the least, I am ready for God's plans for me. I am ready to focus on his will above all else.
A kid on our campus is starting Seven Days of Prayer there is a group on facebook but basically it's taking the time we usually are on social networking groups like facebook, myspace, twitter... And taking that time to pray. The event starts Christmas day and will continue until January 1st. The vision is stating that we will be united spiritually... The goal was to get 500 together to do this in less than a week over 1,000 people have joined to pray. I believe that God can use this to really rock our nation- the question is as a nation are we ready to commit not only a week, but a lifetime of prayer and commitment to the Lord?
Friday, October 23, 2009
So frequently I have wanted to hold my health tight in my hands gripping the last things of which I feel I can control. However slowly I am beginning to realize it's only by God's grace I am here and it's by his will I will finish college.
Today especially I have found myself praying and spending time with God and just thinking about how awesome he is. I realized all of a sudden that when I have began to rely on my own strength and take things into my own will I slowly have become weaker and become confused more easily. I was telling some friends how much I missed my time with God the time to bond with him and understand and I guess, the only way I can define the last few days is falling in love all over again.
As I laid in bed tonight I was listening to the song You're Not Alone by Meredith Andrews and I realized that no matter how alone I feel on this campus... Or how abandoned I feel by people one constant continues to remain and that's God... I have found myself staring out the window at the changing of the seasons and the trees and just in constant awe of the things God does.
Even when all hope seems lost there is a sweeter thing to believe in and tonight I am finding that's where my comfort is. Just spending time with Jesus!
Saturday, October 17, 2009
Saturday, October 10, 2009
"Rich stood up in chapel and said, "You guys are all into that born again thing, which is great. We do need to be born again, since Jesus said that to a guy named Nicodemus. But if you tell me I have to be born again to enter the kingdom of God, I can tell you that you have to sell everything you have and give it to the poor, because Jesus said that to one guy too... [and he paused in the awkward silence.] But I guess that's why God invented highlighters, so we can highlight the parts we like and forget the rest."
I don't believe we each have to give up everything to be followers of Christ, however I believe we cannot accept living life as everyone else lives. College has opened my eyes to this new form of living and bonding within a community. Being close to one another spending time in each other's space and understanding who we are. I have noticed it takes a great amount of humility to be in this communal living. We live in this world of which everyone must stand on their own two feet. They cannot be seen as one but as individuals, we don't take the time to look beyond the surface of who we are but we only take time to break each other down. I am noticing how easy it is to take on the ways of this world how to quickly accept the cultural norm, even if you do not agree with it. To me this is scary, scary to see how easy it is to fall into a default and not even notice.
I believe the only way to become change is by highlighting the whole bible, treating all of the words with equal importance. Loving one another and not looking back- for this is the only way that true change can come about by noticing fault and rising above it.
Wednesday, October 7, 2009
In Luke 9:23 and 25 it states:
23Then he said to them all: "If anyone would come after me, he must deny himself and take up his cross daily and follow me.
25What good is it for a man to gain the whole world, and yet lose or forfeit his very self?
I guess personally, as I began to think of Christ and the life he lived day in and day out it challenged me a bit. Taking up my personal cross to follow him- it brings a whole new meaning when I envision Christ and the life he lived I feel so small so insignificant and so loved. Such contrasting words but so true. I believe that as I begin to understand the bible more I also find myself digging deeper into my faith wondering what the world is all about and if this, this life I am living is really God expected the church, and his people to be.
I then read further below verse twenty-three and verse twenty five stuck out at me. What good can I see from gaining this world but losing my soul, my being and who I was meant to be. I have spent a lot of time in reflection over this and wondering how I can serve more and how to understand and be an obedient servant of Him.
Monday, October 5, 2009
With such a broad topic and no writing prompt- what is one to write about? Perhaps the topic that has hit my mind the most lately is one of which is also the most unique. Upon the second day of me living here on Roberts campus I received a phone call from a woman that was with an organization named The Dream Factory. After a few moments of explanation I found out that after reviewing paperwork that had been submitted on my behalf I had been accepted to receive a “dream”. This dream could be anything I wanted it to be from traveling somewhere to meeting someone famous. It sincerely could be anything that I would like and the vague understanding left me speechless. I couldn’t comprehend what this woman was saying and in the same instance I was overwhelmed to think that I was eligible for something like this. In some senses I was overwhelmed because all of the other children I had ever read of or met that got a “wish” or a “dream” ended up passing away or had something that made them gravely ill. In some ways I was in denial or reluctant to believe over the years that I was even sick let alone sick to the point I had almost died. However this “dream” or this really awesome amazing thing was all of a sudden the smack in the face that made me realize that I had been one of those gravely ill kids but I found my strength through God, friends and family and I always found ways to rise above everything handed to me. It was easier for me to smile than it was for me to cry or complain and soon my friends knew the hospital of my second home but didn’t find pity on me but saw me as their friend as a normal kid in an abnormal circumstance. I guess to me it was ordinary because it had to be and that’s how I dealt with ICU, hospital transfers, forgetting months at a time, and being in a coma. It was how I had to deal with it because there didn’t seem to be another option. Now I find it difficult to find a wish that is about me and sincerely a wish or dream of my own heart. I look to things like traveling, or meeting someone and it seemed as this was such a selfish task. I wanted to affect and encourage other people have an impact. I have narrowed this said wish, down to three things: traveling to Europe for winter break, having a novel published, or meeting the Estess sisters. The first one seems pretty typical of the wish realm traveling somewhere to see something or do something special. However the other two are a little different, my novel would be reflected from my blog and my journals and be put together from all of the writing I have done through my sickness and the ups and downs of being sick with a chronic illness that no one seems to understand or comprehend. The Estess sisters co-authored my favorite book Tales from the Bed, a lesson on living and dying. It was the first book I really read after I got sick and it hit me in a profound way encouraging me to take hold of the disease I had been handed and only finding the best of all that was given to me. Of course there were bad days but there were so many things of which I could find to be truly thankful. It was during that book I found the inspiration to start A hope 4 Lyme a non-profit organization that was founded back home due to the hard work and determination of a close knit and committed small town that I am so blessed to be a part of. I often look back to that book when I need a modern day realization of how anyone can overcome anything even if in the world’s standards the battle could be seen as lost.
I believe that my Sunday afternoon could be easily summed up by a quote from the imagineer himself, Walt Disney when he states: “All your dreams can come true if you have the courage to pursue them”. Although I didn’t pursue them myself; upon really beginning to think and rationalize over what my deepest desire might be it was quite evident that I wanted to publish a book. Through the course of our meeting the two women from the dream factory and I began to look over my dream and soon I learned that they were taking on this challenge to meet my request. To fulfill this said dream and in some ways I feel I must remain realistic in the fact it might not happen and it may become too difficult due to the time limit before my 18th birthday may become a factor. However this truly has been an awesome experience up to this point and continues to be not only unique but exciting and exhilarating as well. In many ways I find myself feeling selfish upon making this dream request but in many ways I am starting to understand that this is balancing out all of the bad memories and unfortunate experiences I have had in the past. This awesome experience is their way of making the weeks and months spent in the hospital hooked up to monitors and tubes seem almost in a balance of ways. That is how they explained it to me anyways and it makes sense somewhere in my mind. After the two women left campus on Sunday afternoon I found that my emotions were extremely tangible almost with excitement as one might see a small child on Christmas morning. I just felt the whole situation was surreal and so awesome it had me in awe. I could hardly believe that this was real and that out of even all the bad not something just a little good happened, but something amazing happened. I guess that sometimes the person that continues to wait for good or seek good somewhere along the lines, receives good. It has been a long journey four years to be exact. However through that I have seen myself grow and prosper spiritually and emotionally in ways that I could have never done before. I have found a new meaning to life and the things that surround me and for this I can only see blessing in what I have faced. Although many weeks and months have been painful, tearful, and ruthless I have found that through faith and the love and compassion of close family and friends nothing is without grasp and after my meeting with two warm-hearted courageous women I can almost say I can include them in my team that helped me see a future and a moment of feeling healthy.
Thursday, October 1, 2009
Tuesday, September 29, 2009
In my reflection I was brought to this post. As I read the post I saw my word for the year is relax. Since college has started and things have gotten busy and hurdles have been placed in the way and there has been this or that to tend with. It has been difficult to even reflect on life let alone relax. However as I read my post over again I realized it was realistic. It wasn't some crazy thing that was something I really have to work with yet just need to fall into sync with.
It should be something that needs no reminder, to relax with the Lord to focus on his love and not so much on my own understanding. I find that so often I cannot focus on God because I am really just trying to figure everything out on my own. I am trying to sort my life out or fix it because that's what I want. However in the end, it's always God's will and it would be so much easier to just relax.
So especially with this upcoming week: I am going to relax.
Sunday, September 27, 2009
I am finding myself wondering of the feelings emotionally and then comparing it to what I have seen the culture around me understand it as.
The feeling mystifies me and is something I cannot completely grasp nor understand. I look into the bible to see these descriptions of love yet not from the heart but stemming from deep within the gut. From your inner and center being.
Love from your stomach, who knew?
I find this to be an interesting but complex concept for one to understand because somehow all of a sudden love, becomes something not so Hollywood and all of a sudden something that is a true emotion and feeling. Coming from the core and not necessarily from your mind or some souped up heart. I believe that with this understanding love can personally be defined as loving someone fully with all of their best interest in mind. This means loving the person fully through failure and disappointment just as much as one can love them through all of their highest points and when they work for hours to prepare for a moment in time. It is loving that person equally no matter what, finding a sense of agape love.
I find this to be something that is impossible to achieve in a human realm however with God it can become somewhat more clear or possible. It encourages me to know that God has this sense of love this sense of adoration that I long for and he fills my heart with it. Fills me with that sense of wonder and that need for love and peace. The more I pray about love and knowing that sense of feeling full and complete the more I feel that I am able to fix things and overcome things from my personal past and heal in a way that is being fully restored in God.
So in this inner struggle with love and discontent with the Hollywood love that has been placed across what seems to be the whole world. I realize that in this God has placed this sense of wonder this sense of great adoration for this word, this concept of love. I believe that it is truly the most beautiful thing being loved by ones savior and having that personal and side by side relationship with him. I think my personal goal by the end of my freshmen year above all of the goals within each of my classes and developing more discipline within my studies... Is to become closer in my relationship with God. To become closer with him and grow in my faith. Through that growing with my self image.
He loves us, it's true and I think the hardest part of my faith walk is accepting that.
Wednesday, September 23, 2009
Although now I must admit that I have been weak in many ways and physically my body takes a beating going to class each day and getting back. I personally must admit that I have found myself envious of my classmates not feeling the existence of constant physical pain and carrying around what seems like a large load of being tired and feeling out the constant physical effects. I had finally seen a light at the end of the tunnel over the past few months and things had been picking up and within the last few weeks and even days it has been difficult to find myself full of energy and life when my body is screaming to rest.
It has been difficult to come and to even try to understand who I am in this transition I want to shed that extra layer of skin, the label of everything and lately I just feel constant symptoms and tonight I just feel frustrated. Frustrated with how my body works in comparison to all of the other bodies but even in the midst of frustration I am thankful to be here today.
Sunday, September 20, 2009
Today as I was in church we sang this song and it made me think...
To think of a world of no more sorrow and no more pain. Some days the pain is so great and it just really hit me hard. To be able to rise to our father and see the light in all that we have experienced on earth. I feel truly blessed to know of a future of hope.
This may seem totally juvenile but today I was thinking about how our parents have always held out their hand whenever we have been sick and how no one else is willing to share like a parent to child. This weekend I have been ill with a cold and I have noticed no matter how many times I wash my hands we're all a little leery on my floor about the direction of the coughs, touching door knobs, sneezes pretty much any mucus membrane!
I don't think this whole H1N1 is helping the cause any more than anything else could be at this point.
I have spent this weekend wiping down my keyboard, door handle, and flat surfaces in my room with disinfectant wipes. I think the next thing will be to wash my sheets.
The transition moves on and college is still going excellent! I just find that blogger is only used when I am procrastinating doing work like reading chapters out of a textbook. Hope you're all staying healthy!
Tuesday, September 8, 2009
Last night in bio lab we went from the outer space and zoomed into an atom in a sugar maple leaf cell. Let's just say that I was incredibly in awe of how small you could zoom in but how easily even the smallest thing that is naked to the human eye could become singled out. You don't see these things on the every day and usually they blend in with the rest of the leaf but it was just incredible. To think that something so small could be so large on a screen projected from a computer in a class room and be all alone.
I guess that over the past few days it has been interesting to say the least, lonely at times and extremely exciting at others. I look at our race and how we look at others and it makes me wonder the stories of the other people on campus- the stories of others that haven't been told or were seen as average. Just the unique plans and wonders that are all around me God's grace falling on them. I sometimes look at others and wonder if they too are struggling with completely understanding why they are here. If they are being faithful or if this was an equal with God... I just want to talk and listen and I so badly want to understand.
I am just hungry. http://www.youtube.com/watch?v=NLz36m8Mw2g
Saturday, September 5, 2009
Somewhere ages and ages hence:
Two roads diverged in a wood,
and I- I took the one less traveled by,
And that has made all the difference."
- Robert Frost "The Road Not Taken"
Everyone said that one day I would feel more liberated and more free to release and become my own person to finally become me. Getting to college has been a huge step for me and one that I have had a difficult time with. Abandoning a comfort zone to be one with God's will and finding his passion placed within my heart.
Tonight I found myself in a state of reflection and grace of God's forever mercy and love for our race, his image. Tonight, I wthe video I created tears poured from my eyes as I realized God truly, honestly has had his hand in my life from my infancy and his great plan is able to reflect as I am joyful and able to praise him in many ways.I just watched my first horror film with a group of kids from the campus and as I watched the film- I am not certain my heart was filled with a great amount of fear or a great amount of love, love from God- making me realize that I am truly blessed for what I have. I am so blessed that my family has not gone missing like so many others that may be able to say they can relate to that statement. Nor has anything been robbed of me to the extent that God cannot renew me in him. I have spent a lot of time reflecting the emotions and raw feelings that I feel and why I feel the way I do and one thing I always come back to especially is prayer.
Tonight, I found myself in a circle feeling left out, alone, and overwhelmed. I felt like for once my wounds were opened and in some places I was having salt poured over them but yet within the pain I felt the great amount of refreshment of having everything cleansed and released. I have met a wonderful group of people and God has truly blessed me with a campus that fits the image and situations that I have sincerely needed not only personally, but physically and spiritually. I have never felt so supported and uplifted as I have tonight. I can only bring thanks. I also am leaving with a video. A video of transition, just another ordinary miracle.
Sunday, August 30, 2009
I see the concern in my mothers eyes the concern only a mother can provide, but I know that my heavenly father loves me so much more, wishing so much more and being able to provide such a greater gift and presence. It amazes me to see this plan he has laid before me. Being able to go to college was something I never dreamed of when I looked into nurses' eyes with fear and fright. Now I go boldly into this world this new transition. I cannot believe that I will be starting college tomorrow- something different a new path to unfold and I feel that in some ways- I am almost not content with my situation.
I feel as though we go so boldly and so confidently we forget to realize just how great our God really is. To give us a saviour and to give us a life of which we are given free will and still provides for us even when we fall short of the glory of God. I realized tonight that in order to discover God fully and understand what his will is, I must not only seek it with my full heart and being but I also have to be willing to surrender everything to him including the things that may be difficult. It has been hard for me to be gone away from home and my comfort zone- however I also am struggling with my relationships getting here. Being able to trust everyone and being able to meet new people and be relaxed. I am an outgoing person however I also fear that I will be hurt and ripped apart in some way trusting too much into someone else. In this I realized the only thing that will give me no disappointment is being able to surrender to God even in the slightest bit and giving everything over to Him. To a greater glory and purpose beyond my own personal understanding. So with this I surrender.
I will update more later about my dorm, and things of that nature but I encourage you to take some time to reflect in the things that God has provided the greatness he has given us. For it is to Him we must direct our praise and glory. I give thanks. Thanks for all that I am given in such a broken and undeserving life. Click the links to see youtube videos with the music that we sang tonight at foot of the cross.
Friday, August 21, 2009
As I venture off into this I see so many new opportunities but I see lots of doors closing. Although I cannot dwell at such things I do see friends that have been awesome and amazing. There is an old adage that says you don't know what you've got until it's gone and as I look at my small town up-bringing over the years and how friends have stuck together and become people in society. It scares me to see the world that's in pain and hurts so deeply.
It was nothing to lend a helping hand and get paid back in ten-fold. When I was sick I saw kids from elementary school band together to support me. As I get ready to leave I am going to something more of a city than where I have lived, although it's not big it's not small town. I am nervous of the people I have yet to meet and the emotions and everything that goes into relationships. I am a soft girl with tender feelings, someone who is genuine with friendship and works for all she can... I have began to wonder at 18, are there still people to respect that- to be really goofy and jump around and dance- but be serious and genuine too? I don't know what to expect of college- I think of it as cliff jumping. Something I have longed to do all summer yet have not. In just a week I will be hitting the water so to speak and that cold rush will hit my face that exhilaration that moment. Pure and of it's own.
Now I stand at the edge, to jump- or not to. In this instance no matter how hard I crash on the breaks I will still end up jumping off the cliff. I am so scared and nervous and even though tons of people have done this ahead of me. My individual instance will be different than all of the rest. Each person's will be individualistic and of their own. So will I take a full force jump? Or will I just slip and slide and resist until alas I get pushed off the rock. Right now it seems like I am stuck on slime at the top and sliding around not really ready- but there and looking over the edge. Is the water going to be cold and painful to the land? Or will it be just the right amount of refreshing? Only time will tell.
Thursday, August 20, 2009
There was also during that time it didn't matter if you were a boy or girl you were just friends that is all. Less complexity and distraction you could call anyone to play with you and in your eyes the only difference was the length of hair and the colors you liked. It was simple you see. I don't know why life has gotten so complex.
Some use the excuse that you are able to rationalize as you age and this is why you have to judge things and figure things out. However I feel that sometimes I withdraw and don't say things mainly in thought I will be judged. They will see me differently. Days are passing much too quickly- things seem to hurt me deeply and I feel pain and love so magnificently.
It's a tender age, 18.
Tuesday, August 18, 2009
I think about the past few months and how April 1st, was the national deadline for decision making. Up until around May 28th I had no idea where I was going to college- and what college I wanted to go to. Yet it was as though one morning I woke up and it was just like it was something I had known all along. God has provided for me in so many ways and I look to my college experience to just be another way to honor him. This is a big step and one that probably wouldn't have been predicted say my Junior year of High School. As I reflect I see many years with some awesome people and relationships that wouldn't have happened if I hadn't gone through what I have.
It's exciting, it's scary, it's a little different, but it's life!
Friday, August 14, 2009
Tuesday, August 11, 2009
What's the deal? Ah well, I look healthy and I am okay with that. It's just another learning bump I must overcome. For now summer dresses are as close as I am willing to get to shorts. I do love summer dresses!
Friday, August 7, 2009
Wednesday, August 5, 2009
As I clicked OK I realized that sometimes that's how my faith is. It's there- and God is sitting there among a list of other things. He sits and waits and waits and once in awhile we get off track and maybe it's from shutting our bodies down at night and just not refocusing in the morning, but all of a sudden another "preferred wireless connection route is available." Sometimes I take it. I forget to do the simple things like re-connecting with God. Making sure our connection isn't faulty and he has excellent connection into my heart.
Over the past few weeks I have been overwhelmed and nervous about a lot of things. Things I cannot control, but wish I could. Other things that I wish I knew more about but don't. Or just trying to get into the focus of the things that are truly important in life. It's difficult to do but when I reflect on my life I can see moments when a pop-up about when I lost connection and didn't go re-start the router box for myself or even notice it was a big problem. Why? because I was busy with everything else. My faith became a back-burner thing.
I have been deeply considering un-plugging and going back to the basics. Taking time to quit using things that plug in like my laptop and my cell phone and other things that distract me and moving back to things that are really important. Spend time with God, because in a few short weeks I will not be able to focus so carefully and clearly as I can now.
Saturday, August 1, 2009
My eyes well up with tears feeling myself travel past this moment in time. As I plan to move away part of me holds this moment forever. Some have cried right along, I have cried a few times but tonight it hit me. I am overwhelmed. I am desperately searching for answers and plans and everything in some sort of stone. Crazy how life happens when you're not looking. I am holding onto these moments. These moments when I can still curl up with my mother the moments I can still listen to her heartbeat when I am sad and even crawl into her bed at night just because I am a little scared. There is something special about the way a mother smells and the way she shows compassion. It's something no one could offer other than a mother, a gentle touch and a kind word offers so much.
My life has been unique and as I have reflected upon all of that, from moments of despair to moments of rejoicing. Things that maybe not every teen can relate to but a distinct group of them can and for this I am thankful, thankful I can share such things with them. Thankful I can be part of a group no matter how small a group of women, and men alike who have had courage to work to get good care and find companionship among each other.
As I see this door close I see another open, however I am hoping to stay in touch. For those of you I haven't heard from in awhile, I miss you. I miss you very much.
Sunday, July 26, 2009
My prayer not only for myself but for my friends as well has been give us pure hearts. I find that so often I feel myself slipping in a sense. Finding other things that distract me from my relationship and focus with God. Even things that are good can be bad when God's position isn't top any more. I am finding it is challenging when you want to spend time with everyone especially family but start taking away from the time that is alotted for God.
I just ask that you pray for focus in our generation- the generation across the line anyone who is living right now is part of this generation I speak of, young and old. I feel that more than ever we need to help our Christian values arise and I just ask that you join me in prayer to focus our hearts and minds on our purpose for the Lord.
Friday, July 24, 2009
Another one of those tourists
Tuesday, July 21, 2009
Maybe I will see some talking street objects.
Have you seen these waterfalls placed in the city?
Some more links to keep you busy:
I think these thought bubbles are ingenious.
I love this wedding video.
Have you seen this cute shop? I love their unique stuff. Remember these chalkboards? I used to use them in reading class!
This girl is totally awesome! I really like her style and her voice.
A good laugh.
This dad is so awesome! I love reading about his daughter and the things he makes her!
Have a fabulous week!
Sunday, July 19, 2009
I will love the light for it shows me the way, yet I will endure the darkness because it shows me the stars. -Og Mandino
Friday, July 17, 2009
I have been thinking a lot about the reflections of relationships on our lives and how choices we make whether dating, friendship, or even how we treat our family members effect us in the long run. I have observed in my own personal life and the lives of others how making bad decisions has created hardship and sometimes I feel it may have even messed with God's vision for my life at that time. When he might have slipped from one to ALMOST one.... With that I have noticed there are many different types of images you might send out being a Christian and I often ask myself, am I doing this action for acceptance or because it is the right thing to do. This passage below from I Kissed Dating Goodbye By: Joshua Harris really hit home for me and I wanted to share!
"We may never model high fashion in New York or Paris, but as Christians we model God's love to the world. Understanding this role profoundly affects our approach to relationships, especially our dating relationships. When dating, we represent God's love, not only to the other person in the relationship, but also to the people watching us.
As Christians, we need to remember that God's perfect love is not only for our benefit. A model wears clothing to attract attention to the designer's creativity. The model displays the designer's work, but the designer's reputation, not the model's is on the line. In the same way, as Christians, we model God's love, whether or not we realize it. People watch us, and what they see affects God's reputation for loving His creation. If we claim to follow Christ then wear the world's twisted style of love, we drag the name and character of our Lord in the dirt.
For this reason, we must ask ourselves, "Am I modeling the love of Christ? Do my motivations and actions in this relationship reflect the perfect love God has shown me?""
excerpt from novel: I Kissed Dating Goodbye Author: Joshua Harris Page: 65
Thursday, July 16, 2009
Remember Kelsey? A friend I made here in the blogging world who helped promote my Christmas thing for Lymies? Well she's having a
Yogurt giveaway! You should definitely check it out!
I thought this bracelet was absolutely fabulous and unique to boot! Go check it out.
Musette Bracelet GUEST GIVEAWAY!!!!
After Sewing Class I have had a new appreciation for sewn items! This skirt is adorable and I would definitely enjoy winning it.
Twenty minute Simple Skirt Tutorial AND GIVEAWAY!!!!: "Tuesday, June 16, 2009
20 Minute Simple Skirt Tutorial AND GIVEAWAY!!!!
Did you ever have a piece of fabric you loved but didn't have any idea how to use it? Any leftovers from a previous project? Bought too much of a bolt you just had to have but never found a use for? If you're anything like me you either buy too much or too little.
First thing's first, DON'T GO OUT"
Tuesday, July 14, 2009
Alright so I saw this lovely idea and thought I would give it a try! I am not entirely sure I am doing it correct however here I go!
Three things things you probably don't know about me.
Upon visiting Roberts Wesleyan College- the college I am going to be attending in the fall I absolutely hated the campus and didn't want anything to do with it. I told my mom there was no way I would go there. After praying about it and really deeply thinking about it- I started to like it and when I visited a second time- it TIED with my first choice! Now I am going to be calling the school home for the next four years.
2. My weakness is visiting this blog and I do so almost daily. I can't help it!
3. My biggest fear is not of death or something like that but more of the dentist. Seriously.
Decorating for the dorms hasn't been high on my priority list lately but here is another little feedback section from all of you. Do you think I could make a big bedspread work? Or would it be too big? Are there any other sites that have cheap wonderful accessories for the home? I need all of the help I can get!
Also- I am collecting simple, cheap recipes to put a recipe book together with some friends. So if you have one feel free to e-mail me here. Thanks you ladies are all fabulous!
Sunday, July 12, 2009
Saturday, July 11, 2009
The weather hasn't been perfect- with just a slight breeze, sun out every day however the rain falls has helped our garden grow in such a way that it has been wonderful. I never knew how wonderful it feels to eat fresh peas and enjoy the growth of flowers. I am enjoying this summer more than any before and I think it's the feeling of being able to be content and know just of today. I am finding that I have to relax and trust in myself more than anything else- I know my body and I need to honor that.
The thoughts of moving away and off to college are daunting to say the least and something I am not too entirely sure if I am excited about but I know it will be good. I am trusting in God that everything I is part of his ultimate plan. I know that the courses will be tough and I cannot believe I will be going to school full time for the first time this fall. Seems surreal in some strange sense. Already this summer I am finding that emotions of everything have been somewhat high and things around the house a bit hectic. I am trying to make choices that are good for all involved and understand everything that will be done.
I would like opinions about dating. This is something that seems to be a controversial issue in my household as of late and I am caught up being concerned of everything in the college setting. I have felt taking the first year with absolutely no dating is something I can do and I will honor and know in my heart it's something I want- no distractions of a relationship to worry of and honestly do not want to date again, until I am considering marriage. However my mother feels the first two years should be set aside for fun and not getting too caught up in a relationship. It is something we have kind of discussed and now I feel a bit worried one year may not be long enough. What is your advice on this? What are your dating opinons?!
And at last- I have changed my blog settings for this new chapter in my life. Hope you enjoy what I did. :)
Tuesday, July 7, 2009
Friday, July 3, 2009
Wednesday, July 1, 2009
Tuesday, June 30, 2009
Somewhere between the last post and now. I graduated. I am officially done with High School and on to things such as college. However upon leaving High School I get this little feeling inside of me that's awkward. I don't really know how to explain it but it's like everything is different and seeping in all at once there is over stimulation and people coming at you in all directions but you know the best part about right now? Is that I am getting to live it. I am getting to say I am a High School graduate. I get to continue my education on to college and I have lived for 18 years. For some these seem like simple tasks, however if you were the girl who was sick for days on end all through high school and got a label attached to your name for being in a wheelchair, being in ICU, or being shipped off to a hospital, or best of all the Lyme Walk that has been a success for two years in a row. Getting to graduate seemed like a long far off task that may not be accomplished within the "normal" four years at high school much less just making through the week. It opens my eyes a little to think that my daily struggle was not the test coming up the next day but making it to the next day. I continue to thank God for all that He has done within me and the strength that has been provided throughout all of this. Yet there is still a pain that comes with all that has passed. However- I am excited! I am pumped and ready to move on. I am ready to be all that God has planned for me. You will be reading more about everything this summer I plan on posting more now that I have some more "free time" but it's not really free I just miss documenting things because things are getting lost in my mind...
Life has been a little crazy lately and I would be crazy to say that it hasn't been a struggle sometimes to step back once in awhile. However I am seeing great progress with treatment, and the faithfulness of prayer and I have confidence that my fight can ultimately be won and not return through God. I really would like to get my testimony that was recently recorded posted on my blog so that it can be seen by all of you! Hopefully it is soon to come. Anyways here is some of the going's on in my life. Take it or leave it, however surely if you take it you will leave it enough to let it stay upon the page. :)
The night after I graduated, well just hours after I graduated really. Our Senior class had an event titled Project Graduation. It is a way for parents to keep an eye out on their children for which is kind of the last real night their students are within their grasp enough to do so. Although in our household the rule has always been "if you're under our roof, you play by our rules". We did tons of cool and fun stuff and there was a relaxation chair that you could sit in for 8 minutes and "relax" containing virtual reality type stuff. However upon waiting 2 hours it was a disappointment but still really awesome. There was hypnosis and there were some really goofy and cool things that happened with that. The night ended Sunday Morning at 6 am and I was ready to sink into bed at that time. It was a long night but it was fun. It was bittersweet saying goodbye and hugging everyone. There are some people that I got to know better that night and I wish I could have gotten to know them better when I had the chance. There are others that I have known since I was 2 and I am excited to see where they go in life! Summer is unfolding and I am ready to see what else is in store.
Monday, yesterday I went to Roberts Wesleyan College. A school I am happy and content to call
"home" it was kind of student orientation and it was really fun! I met some awesome people and everyone was so kind and supportive. I haven't been sure about this college and it has been a major God thing that I am going but I am trusting that God wants me there through a lot of prayer and confirmation. I have really been gripping my faith through this transition period. So despite the cow tongue toss and the drink that I drank that has made my throat hurt all day. I love the campus and the people and cannot wait until the fall! Even though it's going to be crazy it's going to be worth it. I ask that you join me in prayer as I enter college this fall- I realized today after being intimidated with many of the facts about college life this will be the first time I have been a "full time" student in 4 years! The last time I attended a "normal" school day for a whole year was around my 8th grade year in Middle School. However Freshman year wasn't as bad as Sophomore, and Junior year and Senior year was lighter than them. I find that the challenge I will be facing may be different than the other freshmen setting foot in the dorms on August 28th however I do not see this as an obstacle but yet an advantage. I have faced trials and learned to persevere despite anything that was handed to me. So the intimidation of college may face me but it will not defeat me.
Monday, June 15, 2009
Friday, June 12, 2009
Smile it's over.
Monday and Tuesday are my last days of school, for those of you who asked I will be attending Roberts Wesleyan College in the Fall for nursing. If I have neglected to talk to you or call you please know I will be in touch after the end of this year. It has been an incredibly intense end of the year and things have been quite full... Graduation party next weekend!
Today is my last Friday in High School and senior day for all of the Seniors! All of the hard work and perseverance has paid off in ten fold.
It's crazy how fast time has traveled. It seems like yesterday I was in 6th grade and we were "graduating" from elementary school. My class was the last 6th grade class to go through our school district as 6th graders in an elementary school since then they have changed it up a little and now we have an intermediate school.
With summer drawing near I plan on using this blog more frequently. I would love to continue to write as I begin my college experience. It's something that I honestly cannot wait for and am scared to death about all at once. I will be around.
Friday, June 5, 2009
We're off to Washington D.C. this weekend to see my cousin Mike get married to his fiancee Pam. We're staying in the same hotel that the inaugural ball was at. I feel honored to be a part of their special day. We have all been talking and thinking about this special day for a year now. Pam just seems like another cousin to me and I am pretty sure that it will be a great success. So finals week is next week and off I go on vacation for 3 days. Be back sometime Sunday!
Tuesday, June 2, 2009
It makes me wonder, if they are back in town will they still come to the walk next year? Does it mean a lot to the hearts of my friends like it did me? I have been really thinking about how I can be a better person to those around me and after the last few months I am noticing a lot of things I must change. This whole season is one of which I am trying to turn over a new leaf and it is making me wonder, what if today is really the last day I see them. Is this the impression I am going to leave?
Friday, May 29, 2009
I never thought this day would come. Heck, there were nights I thought I would not live to see this day. I guess in a kid that was sick I thought that I would never graduate- or I would and I had big sights for my life however it still didn't seem possible. I have gotten letters and I have been seeing the events unfold before me. Pictures I saw on everyone else's facebook, are now going to be filling mine. Words like Project graduation, Senior Slide-shows, and Baccalaureate fill my vocabulary. I am graduating with honors... Which isn't really a big deal at our school it seems everyone is doing it. Yet- to me, it's a big deal I feel accomplished for teaching myself and still achieving it. I am excited as the next year starts...
However, as I look back on the year I look at a ton of things that have been so gracefully provided for me. Friendships that have flourished to their greatest glories and people who have become so close. I see these people in my life as answered prayer and I didn't see it until I looked back. I look up into the top of my closet- and I see cards tons and tons of cards! Cards that are filled with words from people who care. I am so grateful for the people in my life and this weekend as the walk comes, I am not going to lie a little bit of me is sad because I look at the walk as one of those moments of one of the last hurrahs as a Horseheads High School student.
Who knew- this too would be behind me. Being a teen a thing of the past? Luckily I have another year in it!
Saturday, May 23, 2009
Monday, May 11, 2009
When I feel the warmth of the sun- I forget everything but remember the brilliance of the great amount of beauty.
I feel it all on my skin.
I don't think I can complain because I have so much, it would be giving in.
Friday, May 8, 2009
They say they care and they do a good job acting so too.
Yet when the push comes to the shove and the motion is needed to act,
I feel like they don't.
I feel alone.
How come you can feel so lonely in a crowded room.
There is barely any standing room yet there you are-
Look at me.
Here I am.
I am alone here.
You say it's fine...
So I say it's fine too.
I have some news,
I don't think it is really fine.
Thursday, May 7, 2009
I sit here and I ask that yet I know I am hiding. I am hiding deep under the covers below so much weight and I am so lost. So confused and I just look, look around and look at eyes everyone looks happy so I smile too. When everyone looks sad I want to fix it for them. Yet I don't think I personally want to ever look sad. I don't want to be the fixable cause. Now here I am. I am screaming to an empty world and a void is over my heart. I am silently crying because no one can hear my hurt.
The medical things are certainly a tragedy. It's something that is hard. It's harder when you don't see something coming and your knocked down when you're already down. You might not think it's possible but when someone goes to give you a helping hand and they think they have helped you up but you see yourself on your knees. You're not up, yet they're done.
Do you yell out and say hey I need more help? Or do you continue to kneel? I don't know I just find hope with a leather bound book and a prayer. A prayer is simple and nice.
There is a lot covering all of the things I am hiding and I don't really want to open up anymore. It's easier to seek from within. Trust isn't given you know...
Wednesday, May 6, 2009
Sunday, April 26, 2009
Sunday I went back to church for the first time. It was overwhelming to see everyone again after what seemed to be so long. I had really missed my church family. So it was just awesome to be back in the pew and back with a group of people who loved God and weren't afraid to show it.
Monday and Tuesday were very similar in many ways and just were filled with doctors appointments! It was absolutely insane and I was still walking with my walker. I couldn't get around very well so the traveling was quite intense.
Wednesday I went to school for the first time in 4 weeks. What an awesome thing to be back for the day, I only went to school for a half day to just get back into the mix of things for a little while. It was definitely an answer to prayer and it was so incredible to be back with people my own age experiencing life.
Wednesday night my life shifted, it shifted so heavily that I don't think my life will ever be the same from this day forward. I really can't share all of this night or the things that followed because I feel the news is cheapened by the sharing on my blog with my family and friends that are closest to me.
Thursday night I went to my typical GC and we really had an awesome time. I encountered the presence of the holy spirit and God a lot this week and it was something that is just indescribable. I do believe that if I could wish for one thing for everyone in my life it would be the spiritual encounters and the amazing feeling that fills you when you have them. It's incredible. Seriously incredible.
Friday was another day at school and filled with getting back into the swing of things. After school I had a doctors appointment and also had a Lyme Walk meeting. :) It was awesome.
I will continue to update more. I am doing really well and when I am ready to share get ready to hold your seat! Thank you so incredibly much for all of your prayers. I appreciate it so very much. Please continue to pray for my family and the understanding of everything in complete and whole entirety as I go on.
Friday, April 17, 2009
Thursday, April 16, 2009
I am baffled by the amount of parents that can leave small children just 2 and 3 months old. I try my best not to judge them but at 2 am when none of them have gotten any sleep and screaming is all that can be heard, my heart breaks for these small babies. I hope this is not a memory- sometimes I wonder if people really do remember their baby years.
I wanted to focus in on some things that have happened while I have been here, moments of happiness and things that have been good. I have gotten a lot of time to reflect which has been wonderful because that's all I could do. I slept all day yesterday and that I am sure helped with the progress of getting well. However one thing I did get to do was play a gift-giver to a small baby. A little girl was in here and we got to give her a blanket someone had made. It was a special moment for me because I know the comfort my quilt has brought me on so many nights. It hasn't left my side. So for me to give this small little girl an afghan it was a pretty big deal to me. I was really excited and I felt so special covering her small 5 pound body. She was asleep and it felt so serene.
I thought long and hard about this moment and I decided I wanted to make the difference in the lives of sick teens in the hospital. Teenagers that are sick and are from the ages of 14-18 or sometimes older that do not get these precious blankets anymore because they are too old and the supply is not abundant at the rural hospitals. I need your help figuring out what should be made. Right now all I can think is something imperfect- with a special flaw that provides comfort. The item has to be handmade and new, and I want them all to be kind of similar and I would be willing to write stories for them- or the creator could write a story special for their creation. However I don't know just what these things could be and I want some feedback. Please offer me some feedback on what you think would be just right for a teenage girl or boy who is stuck in the hospital even just for a few days.
Wednesday, April 15, 2009
Tuesday, April 14, 2009
I have slept, I have stayed up late, I have gotten sick.
I am sick of being here I am doing all I can to leave.
I have had almost a new IV site daily and learning tons of new things about hygiene.
I hope to be leaving soon.
Monday, April 13, 2009
I have been here three weeks as of tomorrow. I don't think anyone in my family needs to be reminded. I am gaining strength and walking and finding ways to pass the time. I am struggling to understand a plan but I know I am part of one which brings me peace. I am going to compile a video soon, a video of what is going on.
Right now I am thinking about graduation. That's it. Well, maybe some other things but they're a surprise!
Saturday, April 11, 2009
In High School football seeing the good despite every bad action. These teens find love and support from complete strangers.
A young teenage girl finds a relationship and support from an ordinary woman who quilts. Sending a prayer quilt through her youth pastor her life has been changed and her quilt stays by her side. Through vomit and cheer this girl looks to God now instead of fear.
I am so glad that I got this blanket this quilt has changed my life. I don't what gives me more peace receiving a note from the woman who still prays for me or the comfort of feeling God's presence when I wrap up in the quilt.
Even youths shall faint and be weary, and young men shall fall exhausted;
but they who wait for the Lord shall renew their strength; they shall
mount up with wings like eagles; they shall run and not be weary;
they shall walk and not faint.
- Isaiah 40:30-31
Thursday, April 9, 2009
I really wish that people could know what it was like to be in the hospital for days and have to say to the nurse, I need a commode at the age of 18, 17, 16, 15.. Or I cannot walk can you please help me? Or how about not showering for MONTHS because you have had to become a creative thinker due to the fact your IV is in your chest. Hm. Yeah so I am being kind of blunt because I feel like people have no problem being very blunt with me.
If you didn't wonder. You can stop reading now.
I guess I don't really feel like a heart is an organ I have anymore maybe a brain but not a heart because it seems as though my dignity has been stripped from me and the smallest things are setting me off. I have not been getting good sleep and I am really stressed. I have handed people I trust thoughts and they have butchered them up. I guess I can't be hopeful with things I wanted to be. Some of my friends are thinking about relationships I don't even want to do that right now, after being broken up with and having the person that broke up with me then continue to date someone else and then still feel they needed to consult me for advice about their relationship... I mean it would be nice to be hopeful about dating but I honestly don't see a whole heck of a lot of teenage guys looking for a sick girlfriend who might not be able to walk some of the time.
Not only has it effected that it has effected almost all of my senior year. Hey girls, do you want to go to senior prom? No problem! You can go through photos on facebook and through friends memories and if they're grumpy after prom and extremely tired that's fine! You get to see that as they visit you. That's when you fit in their schedule. How about a senior trip? If you had that in mind no problem because it isn't going to happen because you are sick and it's dangerous and you really shouldn't go without your parents. So with distance considered, no way. How about yearbook, the thing you busted your butt on last year? Do you think you might get in because you helped and you accidentally missed a deadline by A LOT. No that is your fault and that's fine because we're all equal coming out of the high school but when you hear that someone else also bought an ad the same day- No worries! You let that run off like sweat off your back.
So after all of the "normal" things that are going on you try to do some good things... Right? Well cool. Good for you! Get ready to have people breathe down your neck and any little thing that may be seen as amiss you get blamed for. You get e-mails from people and believe me EVERYTHING gets back to you. Even if the e-mail was from my friend's cousin's friend's aunt, that noticed something- you see it, fix it and still hear grief. It's not okay that you're human. You're 18 and you have everything to hold for it. People are breathing down your neck and they feel that treating you like shit is okay. Backing out on things or making it seem extremely difficult is ALRIGHT. You have to pick up these extremely ridiculous puzzles and make them all look good smile, laugh a little and make everyone seem as though it's dandy! Why? Because that's what the world makes it seem like.
My cousin wrote me and said tell the person who felt depressed about your sickness we would gladly trade places so I could be depressed about YOUR sickness. Well isn't that the truth! I guess the world has made it seem that it's not okay to be feeling upset and no one should ever put another kid out or for this matter anyone. I am sorry if you have been a victim of this horrible thing that is really called venting. I am sorry if you have seen me when I have been rude and upset and ready to rip my hair out. I am sorry that you don't see the other 350 days that I am in a semi-decent mood. I am sorry that you don't get to deal with me then. I am sorry that I have been a jerk. I am sorry things are unfair to everyone else. I think it's completely fair that I am sick. NOT I don't know when people thought life should be fair. But it's not. Okay? I get it. Don't keep shoving crap in my face.
K. I am done. I will not be posting any more venting posts this hospital stay. But if you wondered. There it is. If you didn't wonder. Sorry.
Wednesday, April 8, 2009
I don't even feel like posting about this right now but here we go. They have moved my room again and I am thinking that no one should bring anything because I move almost 2-3 times a week. I am on my 15th day in the hospital and I have a Lyme Walk I feel like I am losing it with. I have a senior year that is a train wreck and I had surgery on Monday. So many have asked about the port- We are supposed to be waiting 6-12 weeks to get the new port if I need one... Right? WELL! Just my luck I got a blood clot in my arm today in my picc line so that was removed after my arm swelled up. I have been told I am depressing. That's super and fine but please don't keep reading if that's what you don't want to find.
I am not really enjoying this at all and right now creativity is lacking. So bare with me. I have a periphal IV in my arm now and they're doing that for a few days. My doctor is now currently out of town, I don't know when he will be back hopefully tomorrow but we are consulting with my surgeon and we're going to see what the options are now. We have exhausted plans A-E just about now and who knows what they're going to do.
If I could just ask for prayer for my family and I right now I have been really stressed and it's reflecting my mood greatly. I am really stressed out and this really isn't the year I was expecting, even the nurses are pretty ready for me to go home. I don't really know what to think.
I will update when I know more.
Monday, April 6, 2009
A year ago a lot of things were going on at this time of the year but also they were hitting me at tons of different angles. Through my friends, through my family- twinges of pain and trying to understand. I want you to see some excerpts of this- going from October of 2007 to recent months to around exactly a year ago.
We had practice that night. She was sick and I was worried. She was getting worse and I couldn’t focus on what I was supposed to be doing. I don’t think the fact that the night was extremely stressful helped the situation at all…
Rehearsal ended. She was in a daze.
We got to the area in front of the senior cafeteria. I told her she needed to sit down, but instead she was leaning on me and all of a sudden all of her weight was on me.
I kept saying, “Vic… Victoria…”
She started to shake… She was having a seizure.
Oh, my God… Oh shit… Oh SHIT!... Get her down on the ground… be careful – don’t let her slam her head on the ground… Holy shit…
My mom’s yelling at me from across the cafeteria, “What’s going on?! What are you doing?!”
With wide eyes and through clenched teeth I told her, “She’s having a seizure!... Somebody needs to call an ambulance…”
I’d never felt so useless in my life. For a while I was kneeling next to her, stroking her hair or rubbing her arms. What else could I do? Once one of the band moms came over to check some things on her, I started pacing. I felt useless. There was nothing else I could do.
Hang in there, Vic.
You can do this.
I’m here for you.
I’d stop and look on – this was too real. Never had I imagined…
Band moms were coming over and asking me if I was okay. They kept reassuring me: She’ll be okay, you know. They were worried about me as well.
I kept pacing. I just kept nodding my head.
Well I KNOW she’ll be okay – but at the moment, she’s kinda NOT.
YES, I’m okay… I think…
But I felt tears welling up, threatening to escape.
You can’t cry. You can be strong for this. Everything will be okay. It may not
And I didn’t… at least until she left in the ambulance. Once she left, I guess no one could believe how calm I was through the whole thing. While me and my mom started walking toward the car, I couldn’t do anything else. It call came out. I was such a wreck that night. I cried. A lot.
At that point, I didn’t need a message sent to me the next day telling me what happened the night before. I was there. I was right there.
Photos are always intense. I have not done a photo slide show in awhile but as we reached a year of my port being placed and a year of my gall bladder removed some photos stood out looking through the file.
Sometimes silence is golden, other times silence can be used as torture. The silence I think of is not silence at all but the whooshing and whirring of machines working their job. Sometimes people say that silence can be peaceful but I almost wish some noise tonight.
These last few years have been extremely tough on you and the whole family as we try to understand what this horrible disease is and what I have in store for me. You've been a simply amazing mother, friend, provider, and spouse to Megan, dad and I. I am touched by how much you care about me and how selfless you are when it comes to the care you have to provide for me or get for me.
As I grow older I not only learn more about you and your character but I am also able to discern more about life and myself in general. You have absolute acceptance of me and you're one of the few that are able to look past the many complications that this disease has handed me. You have also shown me what it takes to love a family unconditionally and how selfless a mother must be when others are in need. Whether it is towards myself or another person that you have come in contact with. Over time you have taught me that giving to others is the best gift of all and that you shouldn’t condemn others of their shortcomings but listen to them and help them become a better person.
Thank you foremost for not only being my mother but also for the people that you have brought into my life through having you in my life. You have most definitely blessed my life in an immeasurable way and helped mold me to become the person I am today. Without you blessing my life I know that I would not be nearly as good of a person and I would probably be less confident and I wouldn’t be able to tolerate as much. When people say I am a good person I have a few people to thank for getting me to the place I am today and for giving me the insight and knowledge that I have and you are most definitely one of those people. I think the thing that I admire most about you is your ability to offer kindness to every person that walks into your life and that you can go out of your way to help someone even if you’re running late or have other plans to do that day. I will never forget the day that you stopped to take a lady from church to the mall from the bank even though we ourselves were running late to a doctor’s appointment. Your selfless approach on life is definitely something that I feel you should be noticed for and should be given acknowledgement for. Thank you so much for gracing my life with your presence and loving me unconditionally.
I want to say I love you. I can only hope that I have imparted a fraction of the love, warmth and camaraderie you have extended to me. A mere “thank you” doesn’t cut it, but thank you anyway.
Almost exactly a year ago to date:
Today I think back to these moments I am amazed with how far I have come. I am faced with new things new thoughts and new obstacles but nothing too hard to overcome. I am looking head on to a moving train getting ready to step aside and hop on. Not let this ride pass me by because sometimes baby you gotta do the locomotion! C'mon baby do the loco-motion. I don't think you'll like it, we just have to chance it. I don't want my baby sister doin' it with ease... Getting of the ride now. So C'mon C'mon lets swing these tests and rock these tracks and see if we can't get home with ease. C'mon C'mon the ride will stop now.
Sunday, April 5, 2009
Tuesday, March 24th I went to the ER with bluish hands and shaking. I felt as though I could not get warm and things were well on their way of heading south. That evening I had a small seizure upon getting to triage after waiting around 2 hours to get to triage. That evening we could not find our thermometer so we had them take my temperature upon arrival to the hospital and it was around 98 by the time we reached triage it had raised significantly. I cannot give an exact number. It was also this night I had a scare with pneumonia in my left lung. There was significant shadowing on my left lung that caused them to believe there was fluid. I also had a fever and I was very drowsy. Two doctors felt I had pneumonia. I became very drowsy in the ER and ended up getting tired enough to sleep and not arouse to anyone even through multiple blood draws and blood cultures. I remember nothing after I fell asleep. I was wiped out. They decided to admit me after taking the blood cultures and since I was not awake.
That week from the 24th to date I have had three more blood cultures. The original blood culture was felt to be contaminated but was positive with coagulase negative staphylococcus and Granulicatella Adiacens both bacterium were growing upon the reading of my cultures. It was a collaborative decision between a infectious disease doctor as well as my PCP to start Vacomycin by Wednesday or Thursday. By the weekend of the 28th, our prom weekend they had decided to discontinue Rocephine or Ceftriaxone. Due to the continuation of fevers they wanted to be sure that they were not drug induced fevers. This confused me until I understood what was going on a little more. The infectious disease doctor consulted with us again to explain what his views on everything were and 1 in 4 patients that he has seen are able to get over this within the 2 week course of Vacomycin. In some cases however, the patient has not been able to get over this hump in that case the port, of which they have now figured to be infected due to certain cultures that have been taken- may not be able to be brought back to sterile. In these cases it results in removal of the port.
My Primary Care Physician stated he felt that my port would have to be removed due to the circumstances and explaining things such as the immune complex along with the fact that plastic has no fighter cells to get rid of infection upon settling in a device such as my port. When my Primary Care Physician met with us I asked many questions including questions about the bacteria and why I would have gotten the infection. He considered this and said among many things it could just be because of all of the pokes that I had received or just a simple cut somewhere. It is very easy to get bacteria into the bloodstream. With all things considering and having my port for a year we were told the risks and benefits of removing the port immediately (April 1st). I asked him to wait until Monday- so we could discuss the thoughts as well as wait for the latest blood culture to see if there were any changes. He said he felt this was a good decision and he would support it. Since I have continued to have high fevers and extreme chills mostly at night and sometimes during the day. We feel a persistent infection is in my port and it will have to be removed. He said chances are the infection is still there. Where the heart has come in, is that the port is in my chest and near my heart. In some cases a heart valve can become infected so they have ordered echo cardiograms to check out my chest cavity to make sure we're covering all of our bases.
What does all of this basically mean? I will need two surgeries that will remove the infected port and insert a new port. Once this happens I should be back onto my road with recovery.
Along this road of sickness I have lost my ability to walk. The sensation in my legs is slowly being lost and my feet are not working properly. I have been working with physical therapy and I believe that I will be okay it is just going to take some working out to get them back to normal. I don't understand what goes on with my legs but I do believe they are always the first to go. I have also experienced some incontinence which is both embarrassing and quite stressful for me. However, this is just a stage in the grand scheme of things and I believe it will be fine.
As far as school- it honestly hasn't crossed my mind until today. I can honestly say I have not picked up my physics book and have not tried to sleep with my American History book to process the information through osmosis. That is for a later date. I have been trying to keep in touch with the teachers I currently have especially my physics teacher because I am not so sure it will be easy to catch back up in that class. However he seems to be confident that he will be able to help me. College is another thought and I have considered taking a year off because with the financial burden and the physical burden I am quite weary of setting foot in that scene if I cannot afford it in any way shape or form anyways. It breaks my heart to consider that yet it seems to be reality at the moment.
I also wanted to go through some basic vocabulary right now that could through some for a ringer:
Port: A port is a small device usually made of silicone or plastic that is surgically implanted beneath the skins surface and connected to an artery that leads directly to your heart.
PCP: Primary Care Physician
Blood Culture: A blood test that is done when serious infection is suspected. It can identify bacteria or fungi that are spreading through the bloodstream. (http://www.thegooddoctor1.com/glossary.html#B)
Coagulase Negative Staphylococcus: Basically is a bacteria in the bloodstream that carries many anti-bodies. It can become severe but is not deadly and is carried within every-one's skin, just like everything- too much of this can be a bad thing.
Graulicatella Adiacens: Also a bacteria within the bloodstream common among prothstetics such as my port. This bacteria is commonly associated with things such as ports or any other sort of prothstetic.
Rocephine (Ceftriaxone) and Vacomycin: Both antibiotics used to treat infection. We have been using Rocephine for the Lyme disease both are IV antibiotics and have been being administered through my port.
If you have any questions please direct them to me I will attempt to answer them. I do not understand everything that is going on at this moment but this is what I understand.
As many of you know tomorrow is Sunday and is church. Next weekend is Easter and I would really love to be at the service and worship with everyone it is looking as though it could be cutting it close getting this all to fit in one week and being healthy enough to make it to church by Easter. This is something I will cross next weekend. However, my admissions counselor shared this song saying it reminded her of my situation. As I listened to it again, it really hit me. He really has never let go of me through the calm and through the storm... The song is You Never Let Go.
There will be an end to these troubles... I can see a light that is commin'!
God's timing is perfect. This is not his disease but I am his work.
(Please ignore the grammar and if it doesn't make sense at times- I am very tired but I wanted to update with the information I had.)