Tuesday, March 31, 2009

I want out.

This hospital stuff is getting old.
The food sucks.
Information is getting jumbled.
No one is listening to me.
I just keep God as my focus.

Monday, March 30, 2009

Arnot Magic Mystery Tour

The roller coaster is speeding up, feeling wind in your hair and the mist of sweat forming on your back. You lie there looking up things are spinning and going forward but you want to look back. Someone screams make this stop. Another yells it's not my fault. The misery and pain comes from the Arnot Magic Mystery Tour. Growing little cells.

Invisible to the naked eye, I yell who paid attention in biology I feel like I might die. Everyone silenced the roller coaster came to a stop. My head smashing quickly right into the top of my car. Screams were thrown and mist of vomit and phlegm filled the air. I had a wimpy cough but the guy in front of me sounded like a bear. A small child cried out and people looked up. We realized quickly we shouldn't believe in luck!

Attention ladies and gentlemen here on this magical ride. We told you 24 hours... Didn't you expect to lose your pride? We have slowly re-arranged your nerves you see- you won't be walking off this ride with glee. I looked at the the chief expecting him to be experiencing this horror. Looking back I saw small children and looking down I realized I was upside down. My heart went to my throat and my hands went to my blanket. I had forgot to hold on and now I felt naked. Terror filled me and blood rushed to my head my heart was pounding I thought I might be dead... Here we sat waiting for the conductor as he scratched his head.

Rollercosta

Hello folks and welcome to Arnot Ogden Medical Mystery Tour. This morning my Dr. Doe has the results confirming two cultures that were positive with infection in a device in your chest. He suggested that we have it removed due to everything else going on. For your safety and the safety of all organs involved please use alcohol pads when needed and safely place all side rails up additionally we would suggest tucking yourself in with the provided blanket for extra security. This ride does get drafty.

We would also like to warn you now things may get a bit rocky. We have injected an extreme bacteria that usually lives on your skin into each of you through your seats. Although we have conflicting opinions we believes we would be fine to cure the infection with some stronger antibiotics and that we should try that first. Although it doesn't always work so we may have to deal with it later. If you didn't know upon entering this ride you will be traveling for a complete 24 hours. This evening you will be experiencing chills of a life time! Some like to call it the most spine rattling experience they have ever encountered. With chills that tighten your jaw so tight you may not be able to speak and weaken your body so that you will feel like a 10 ton brick. For all you weight watchers out there don't worry you're not gaining a single pound and most likely you will be losing your appetite for the next 48 hours after exiting this ride! (An added bonus for sure.)


You may be looking down this steep slope you're approaching wondering if it was a good idea getting on. With infection in your chest and antibiotics being put into you that could be drawing out the ride for a few weeks more.... The opinions that conflict, the ideas that clash all seem so important so quickly and you wonder if this crazy ride even has enough screws and bolts. Well folks we've got some news for you! There is NO turning back and the slope we have provided you with is the highest in the state of NY. Hang onto your blanket as the draft may be heavy hang on with anticipation and get ready to live the next 24 hours on the Arnot Ogden Medical Mystery Tour.

To be Continued...

Love is Still A Worthy Cause

Sunday, March 29, 2009

Sometimes it's not you that has to take control, but it's God.

After thinking about this post for awhile I really wanted to put my heart in it. Through being sick this time it has really brought me to think about a lot of things, there was a night a few nights ago where I honestly thought I might be dying. I am not trying to scare you or exaggerate. However I could feel my blood rushing through my body. My chills were overcoming my body and I couldn't stop shaking. I was completely awake feeling extreme crushing pain on my head. It was a moment that I was scared and all I could pray is, God I didn't know you wanted me to go so soon. I feel like there is so much I have that is unfinished.

The infection is surely there and I have an abnormal echo-cardiogram. The infection itself will be dealt with by removing the port that harbors the bacteria. Which is good. Things are going to be busy and intense over the next few days and I will try to have anyone that can sign in and update the blog. This way I will have the days after to remember and reflect on.

People have said I need to be more positive or handle things a little different but I find most of all I need to cling to God. I often feel like I am not thanking him enough or I am not noticing the things he gives us. So therefore I found a song that I feel adequately shows this emotion. Ignore the video. The song is It's A Good Day by FFH This song is inspiring me to say- It really is a Good Day.

I will update you now with a few more tidbits of what is going on:

Last night I had another episode of severe chills and I have a fever that I still haven't shaken hopefully I will soon. The chills were horrible and have weakened me a lot but I am clinging to God and I find myself seeking him more and more the weaker I get. My PCP was off today and another lady came in and eased many of my fears. God will see me through no matter how dark the corner.

Please continue to pray for me and especially my family as we face this together.

Saturday, March 28, 2009

Surgery

I have to have my port removed. I am quite upset about this but there is an infection growing around my port and they will be removing it sometime this week. Please continue to pray as I don't feel well and I am quite stressed out.

Support and Cards

Many of you have e-mailed me asking about an address to send a card or some encouragement. If you would like to do so, you can mail them to:

Lyme Walk
Attn: Victoria Wilcox
P.O. Box 74
Big Flats, NY
14814

Thank you.

Update

Last night was another extremely rough night with shivering and shaking and moaning and groaning. I am really starting to feel extremely sick and sometimes it's difficult to be hopeful.

We're waiting on blood cultures and what they will hold- the results of them will weigh in on if my port will need to be removed and if my heart valve is in tact. They will tell us enough to let us know how sick I am. I can tell you I am not feeling so hot. It has been a really big struggle for me just to color or do anything really. I have been sleeping almost all day, day in and day out with no strength to prove for it. I don't understand this disease or why I feel so sick however it's really sucking everything out of me.

My faith has been faltering lately and I have started to cry out to God asking why he isn't using these great moments these moments of extreme weakness to just heal me. I know that the disease that lingers within me is that of which is given from the enemy. The devil. I refuse to give him credit for any strength I have for all the strength I have is from God.

There is a quote that states:
"Just think,
You're here not by chance, but by God's choosing.
His hand formed you and made you the person you are.
He compares you to no one else-
You are one of a kind.
You lack nothing that His grace can't give you.
He has allowed you to be here at this time in history
to fulfill His special purpose for
THIS GENERATION"

This makes me wonder, what am I giving to this generation? Am I speaking the Lord's compassion and love everywhere I go? Even to my parents when I am extremely frustrated?

A Chris Tomlin song "I Will Rise" came on while I was writing this post and I started to listen to the lyrics and there was the verse that said:

I will rise when he calls my name
No more sorrow, no more pain

The lyrics of this song just make me remember how much I have to look forward to and how trivial everything else is.

All I can imagine is the day I am able to dance with Jesus and fall into his arms and have no more sorrow and no more pain. That day that I continuously long for will be ultimately better than any prom I can imagine, being held with complete agape love and just knowing an unchangeable love.

Friday, March 27, 2009

One single request

If you want to do something, if you wish you could take away the pain.
Please remember all of the things you can do- remember to thank God for your ability to walk and your ability to tie your shoes. For giving you strength to face each day because someday you might not be able to.
And if a girl is crying? Can't she at least have some decent tissues?

Prom.

Tomorrow is my senior prom and all of my friends are finding their way there.
Dresses all over and make-up and beauty are all at their door, or so it seems...
Once in awhile I would sit and think of the worst thing that could happen, never believing it to be true. Thinking of things like missing prom or even graduation to sit in the hospital instead.
Tonight is the night before my senior prom, I had a dress all picked out and everything seemed ready.
Now just days ago, things changed a little and look where this has landed me. here. stuck. cornered.

With tears streaming down my face I feel defeated once again. Defeated by a disease that shouldn't have such control but also by friends that I have held so tight.

I always thought if they were in my shoes I would do anything for them to make them feel better because I don't want them to feel how I do. Yet tonight I feel a little sad if any of them do show up because they have their lives too. Last year I made time to come to the hospital just before prom, not for me but for the nurses and the elderly ladies up on the floor I used to volunteer on. Not because it was convenient but because I had come a long way from having a catheter in me and an IV bag hanging and tubes everywhere. I wanted them to see the person I was not the person I am temporarily. I did it for them.

Sometimes I wish that life came with a little instruction booklet of how to feel. I wish I knew how to feel about my best friend who is too stressed. I want to support her yet I wish she knew how much 3 minutes mean to me. I want to be able to see things from her eyes yet I can't. Most of all I want to feel better so I could just go and be with her. Tears just pour from my eyes because I know no one will see both sides of the fence but I wish for a moment I could just get a glimpse of the feeling of being the pretty, smart, fun, healthy girl who landed prom queen and everything else. Tonight my heart most of all longs for just fitting into a healthy lifestyle no strings attached. What happened to those days?

Still in the hospital and filling a pitcher with tears,

Victoria

Thursday, March 26, 2009

Update on Victoria

Hey everyone-
It's Kori, one of Victoria's friends. She wanted me to put up a post to let everyone know that she is not neglecting her blog, but that she is in the hospital. I was told that I had to do this in a creative manner....so here we go! Being my last semester of nursing school, and suffering from senioritis, I thought it would be a good opportunity to make sure that my care planning ability has not been impacted by my lack of motivation....

Patient: Victoria Wilcox
DOB: 2/4

Cluster Assessment:
-Patient gives reports of being tired over the past few days
-Patient admitted to the Peds floor from the ER early Wednesday morning with chills
-Complaints of increasing exhaustion and no energy
-Doctors suspect patient has pneumonia
-Cultures drawn and sent to the lab: returned with mixed results (lab believes the cultures were accidentally contaminated)

Analysis and Synthesis:
-"Pneumonia is an acute infection of the lung parenchyma that commonly impairs gas exchange"
-"The five cardinal signs and symptoms of early bacterial pneumonia are 1) coughing 2) sputum production 3) pleuritic chest pain 4) shaking chills 5) fever"
-Taken from Medical-Surgical Nursing made Incredibly Easy, 2004

Nursing Diagnosis:
Severe fatigue related to possible medical diagnosis of pneumonia as evidenced patient reporting feelings of exhaustion, sleeping continuously and lack of interest in activities such as watching television or texting or talking on the phone

The speedy version:
Victoria is very tired and they are taking more cultures to see if she does indeed have pneumonia. After they determine that-they will go from there to decide how they want to treat it. She is in good spirits, just very tired. So please be praying for her and for a quick return to good health!

-Kori

Thursday, March 19, 2009

Thank You

DEAR GOD:

I want to thank You for what you have already done. I am not going towait until I see results or receive rewards; I am thanking you rightnow. I am not going to wait until I feel better or things look better; Iam thanking you right now. I am not going to wait until people say theyare sorry or until they stop talking about me; I am thanking you rightnow.. I am not going to wait until the pain in my body disappears ; I amthanking you right now. I am not going to wait until my financialsituation improves; I am going to thank you right now. I am not going towait until the children are asleep and the house is quiet; I am going tothank you right now. I am not going to wait until I get promoted at workor until I get the job; I am going to thank you right now. I am notgoing to wait until I understand every experience in my life that hascaused me pain or grief; I am thanking you right now. I am not going towait until the journey gets easier or the challenges are removed; I am thanking you right now. I am thanking you because I am alive. I amthanking you because I made it through the day's difficulties. I amthanking you because I have walked around the obstacles. I am thanking you because I have the ability and the opportunity to domore and do better.

I'm thanking you because FATHER, YOU haven't given up on me.

Monday, March 9, 2009

Mother Teresa.

Although I have not been raised Catholic, this quote stuck out to me. It challenges me to find one person. Just one. To be kind to each day.

“I never look at the masses as my responsibility; I look at the individual. I can only love one person at a time - just one, one, one. So you begin. I began - I picked up one person. Maybe if I didn't pick up that one person, I wouldn't have picked up forty-two thousand....The same thing goes for you, the same thing in your family, the same thing in your church, your community. Just begin - one, one, one.”

- Mother Teresa

Friday, March 6, 2009

My God is big my God is loud.

If there is one thing I am tonight, it's free.

Tonight I am free from anything but the love of God. Last night I went to this awesome worship and prayer service with well, myself! I was invited by a girl from school and it was the most fun and intense worship I have done in a long time. There was just something about the environment that was infectious. The people were so steadfast in the Lord and it was really all around me. It was the most awesome thing ever.

If there is one thing God is, he is love. I am amazed every single day by the love that pours out all over from his people. God is wonderful and I love him with all of my heart and soul. You may wonder why I am writing about this- but this is why, because I realized there is one thing I don't do enough of and that is read my bible. I have been reading it nightly and it still doesn't seem like enough. I have been drawn into the book of His word and it just seems so captivating.

One thing I have observed is the fact that I will let a bad morning set the pace for a whole day for me. If things go rough that morning it could ruin my pace for the rest of the day, and effect others. If I am a Christian and I want to show God's love how come when I have a wonderful day full of blessing I don't let that seep into the days following? I have really been looking to test my faith in different ways, or make myself become a better person. Diving into just about anything I possibly can. I can't wait to continue to find these things in him.

Finding glory in the sunrise, and glory in the rain...

Tuesday, March 3, 2009

Chronic illness aka Q&A edition 2.

Okay, well I told Amy B. she could ask some questions because she didn't know I was back in blog land. She is the only exception because I have a huge soft spot in my heart for her son Philip. So here are her two answers.
Amy asks:
As a young adult the same age as my Philip... How do you make it through the harder days when you just wanna feel like WHY ME? Or What if?

Honestly, this might sound cliche- however my hard days are gone through with either reflecting on worse days or worship music. I love worship music with all of my heart and soul. When those don't work I have a select few people that I can go to and cry or talk to. There are actually two girls I know of off the top of my head and one guy that I have called and they have listened to me cry for far too long. I feel really bad about that sometimes, however that's how I get through those moments. I love them forever, I wish I could tell them about how much I love them. The What if days... Those are far and few between for me, but it seems like when they hit the idea doesn't leave fast. It scares me sometimes especially when I know there is something off. Even something slight, I am on my toes and scared. I wish people knew what it was like to have a stabbing pain and within two days have surgery. I think after getting my gal-bladder out last year I realized that things could get serious fast and that scares me sometimes. Although being with Jesus is going to be awesome I can only imagine.

"Philip rarely has those days but when he does they are so hard for me as his mom...I would love to know better how to help him."

I feel like the best way to help, is to listen. Support him even if it is screaming right along with him, there is no promise for tomorrow for anyone, that's the truth. However the days we are here should be spent loving each other. Show him love and let it be known he is loved.

Do you have any idea how special of a young lady I think you are? I just am so glad you are back. I have worried about you when you left a while back.

Honestly- with two people saying this now. I really don't know if I do know how special people see me. I don't think I will ever know because I have learned when God is in the picture, somehow the unthinkable always happens.

This Question and Answer time has gotten me to notice how people feel and what they wonder when they look at me. If you have other questions even if they are trivial. Leave them around, I might do another answer time with them if there are enough. I really wonder sometimes what people think when they're looking at a teen that's really sick. However I look at them now and I feel like it seems more normal to me. There are a lot of very sick, very hurting teens and I mean physically hurting not mentally but mentally hurting too. Okay so both. I feel like it's something that is actually pretended to be little but I know quite a few.

I feel that the dealing with a Chronic illness isn't talked about a lot. I also feel like when you're a teen it's an awkward time to be sick. Right now I feel like I am trying to figure out who I am as a person like every other teenager that is going through this period in their life. They experiment with things they go crazy they sneak out they, well- they do a lot of things. I see my peers do things a lot and I think wow that's awesome or I am glad I am not doing that. However at the same time I am taking on the responsibility of calling doctors and making decisions. Decisions that could quite possibly affect me in major ways the rest of my life. No, I don't mean college. So for those things it's stressful. I also think that sometimes those things are ignored among my friends and sometimes adults that I associate with. I think I overreact to little things because I feel like one day I am going to wake up and that person might be gone. Yes that is a real fear I have.

This article made me feel a little more normal about some things. Although I don't agree with some of the topics on the list and could bring it down to like 30 some of them really hit the nail on the head.

The two below hit me personally because in the last few weeks I feel like both have happened and I feel really bad about it now. I am praying about a certain situation because I feel at peace about it now, but it felt like a huge deal a few days ago.

Always ask before touching or hugging and never give them a power handshake or a friendly biff on the shoulder. Many people with chronic illnesses are in a lot of pain, particularly if they have symptoms like that of Fibromyalgia, where every touch signal can be magnified into significant pain. This changes all the time, so don’t stop hugging them, just check first and be gentle.

Recognise that pain and extreme tiredness can make anyone irritable (have you never snapped at someone when you’re sick with flu?) and that various medications can affect behaviour. If your friend does or says something rude or hurtful, give them the benefit of the doubt. They may well be horrified afterwards.

This is The End of my Question and Answer and Answer time! Hope you enjoyed.

What is a girl to do?

Okay ladies- This is pretty much a tragedy! Somehow my blog got stuck in a foriegn language! I have no idea what it says. Anyone want to help a friend out? How do I fix this:

Question & Answer

Your homework is in: Here are the questions with Answers of course.

From BoufMom9

How old were you when you were diagnosed?

It was the summer of 2005, so I was 14 years-old.

Were you relieved or upset to have a name for your illness?

When I was first diagnosed I didn't know what to think. I didn't know what Lyme disease was, and I was just like "oh". I wanted it to be treated soon and I figured within the next month I would be fine. I never really knew much about Lyme disease until like last year. I didn't know about anyone elses stories really anyways. I just kept in my personal life with what was going on with me. I did know it stunk though. I remember Halloween my Freshman or Sophomore year, I went with my friend Melissa... We came back early and I got home and had a break down and cried and told my mom how sick I felt all the time and how horrible it was. She was so confused... We both were. I am sad now that I have been sick this long, however I have met some amazing people and for that I wouldn't trade it.


Finally, do you have any idea what an inspiration you are to others?

This is something I hear from people a lot. However personally, I have a pretty low self-esteem. I don't feel how I take what is handed me is any different than it should be taken. It is nothing special and I am not trying to be a big deal. It is just how I have to get through my life. Everyone has a story behind their skin, some just aren't as open as I have been with mine.

Melody asks:

What sort of activities/hobbies do you enjoy that help you cope with being chronically ill?

Well a. I am having trouble believing this is chronic because I fully believe God will heal me one day. So therefore I don't think I will be sick forever. Even if that's what the doctors say... Things that help me through the day are painting, and art, ah there are a few things. Well I love to paint and I love artwork. I have taken a liking onto making this book, it's kinda cool, just me experimenting pretty much. I also am a chronic dreamer so that is an activity in itself. I love to dream about things like jumping in mud muddles, laughing till my stomach hurts or twirling in dresses. If you know me in person and have known me for awhile- you know I will daze off once in awhile, I swear I am off in an awesome dreamland. I love to help others as well. If I could do anything in the world for the rest of my life it would be give back to the community. If everyone did that we would be free of a lot of un-happy people. OH and good mail. I LOVE MAIL. Giving and receiving. It's the best stuff in the world. It literally can make me SO happy. I think it's the best. I like to send packages too. Lots of them. So, some of these don't seem like they could make me happy- or deal well but hearing about the joy things bring others makes me feel like I count for something, as selfish as that sounds and sometimes remembering that makes me remember that being sick doesn't have that big of a strong hold on me. Oh, and I love to talk to my grandparents. It's something new I am enjoying that helps me remember I am still young and they give me advice, especially on college. My grandpa has had some really interesting points of view on it. I am thankful for family the most.

Ladies, Since you're the ONLY two people who responded to my post I have a little surprise for you, some good mail! Please e-mail me with an address to send it to! :)

See? Maybe if you responded to my posts you would be getting good mail too!!

Sunday, March 1, 2009

Revolve

This tour was absolutely amazing, the women and thier faith was definately evident. To have so many girls in one building praising God was absolutely outstanding. I loved every moment of it! More to come lovelys, have a fantastic evening.