Home, Hopeful, and feeling a tad bit better!

After the last post I wasn't feeling too great so I didn't want to post again for a bit until I knew I was okay and what was going on. I am pretty sure I have been fighting something viral as well as the herxing from the new IV antibiotics. So it has been a little intense here at the house and who knows what still lies ahead but I have been doing my IV at home and got my port needle changed this week for the first time and now that will be weekly as well as antibiotics IV daily. Along with everything else that I was taking before.

I know the medical stuff to some is a little redundant or kinda boring but for the last 3 weeks it has kind of taken over my life. I have been feeling so crappy some nights sleeping isn't an option till around 1 or 2 in the morning and some nights even 3 am! So it has been a struggle to get my thoughts on other things, like my 18th birthday and college. I just got accepted to a college near home, Roberts Wesleyan and it would be enough away from home that I wouldn't be in my backyard but coming home wouldn't be an issue either. I can't wait to hear from the other college I applied to and start to decide about things like that! Ha. So basically I am just going on and trying to figure out what can be done and what is left to do to make sure I am able to graduate in June.

I also am excited about going to church tomorrow and getting back to youth group after 2 weeks of missing it...

It seems as though I am in for a ride and need to hold on tight but after this week I don't doubt that anything is impossible, through Christ who strengthens me.

Hello

Hi all it's Victoria and for the first time in awhile I am posting. I am still in the hospital and even on high doses of pain medication I am really feeling the pain. Today Physical Therapy comes in to analyze and try to figure out the situation. My strength comes and goes and I continue to fight. I am overwhelmed with how horrible I feel and how weak I have been. I wish I could write today with a warm fuzzy feeling of good health and happiness but it doesn't seem that way. Today the meeting with my PCP was basically you have lots of nerve damage, very bad nerve damage. We're now looking at things such as walking being an obstacle that may be the hardest it has ever been to get back. I have demanded new blood tests and other takes on the situations. I am searching for second and third opinions and we're going with all we can. Right now my energy has been used to be getting better, seeking hope and meeting half way with God.

Last night was an extremely taxing and overwhelming night on me. I had a lot running through my mind and laid listening to sermons from other churches on my friend's ipod. I have never felt more in tune with God and yet so out of sync. Things have been hectic and it's crazy just sitting here typing this and gathering my thoughts. It has almost been a week and in that week I have bounced from telemetry to ICU to now pediatrics. My 18th birthday comes February 4th and it feels like the last 4 years of my life now are all a blur. It's so amazing how things can come and how fast a rug can be pulled out from under you. I ask you for prayer and discernment. This road is going to be long and right now it's taking a lot of strength just to hold my head up. Yesterday, standing up I passed out in my nurses arms even going slow. I am going to continue to have Sarah blogging for me as much as she can because I will not have my laptop and my strength is still not high enough to continue blogging although I feel this is crucial to keep updated. For my own personal reference, and my family. I thank all of you for your prayers it humbles me all of the compassion that has poured out.

Right now I am searching for treatment and doctors and everything else. My heart breaks as I almost made it to half way through my Senior year and now I am at a stand-still. I am so heart-broken. Your kind messages mean the world to me and now I am just waiting. This post has taken me so long to write and I have a feeling it may be awhile before I can post again but I want to sincerely thank you for all you have done. Right now medical bills are through the roof the treatments that may be ahead will probably be even more expensive if it's anything that we have been thinking about. I am so overwhelmed with what is going on and to be honest I am heart broken about it all.



Please continue to pray and keep me in your thoughts. I hope some day I will be able to say this disease helped me touch the lives of others. But today it feels like I am walking on broken glass. My guess is that Sarah will continue to post as she can and her time permits. Those of you who participated in Lyme Christmas I hope you got thank you cards if you didn't from me that's because they're on my desk and no one has mailed them for me yet. If you got gifts- please make sure you sent out thank you cards and I thank everyone who was a part of that from the complete and absolute bottom of my heart. It means the world to me and I am so thankful for your kindness. I am hoping to start a thing with Lyme teens to boost spirits because to be absolutely honest- mine have been in the dumpster... I have never felt so upset and alone as I have this hospital stay. It has really taxed my spirits and how to get on with life. Thoughts of college have been diminished and everything I have been really hoping for has been kind of put on hold. So continue to pray updates will be as they can be and hopefully home will be soon but looks like it might be awhile.

Thank you all for your encouragement.

Victoria

Who needs realistic?

James 1:2-4: Consider it pure joy, my brothers, whenever you face trials of any kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything.

An open coat with a scarf and newly fallen snow- closing the new year out with a bang! I don't need realistic, I don't need pain! I am free from everything that holds me down because I am choosing my mindset an hour early, I am going to be free this new year! No tethers no ties, no cords to hold me down. I will dance in the snow I will spin with all my might, laughing giggling and screaming out my lungs. My motto in the new year?

Lay it on the line- How I live today, is how I will be remembered.

This past year I went from not breathing on my own, bed bound, wheelchair bound, walking with assistance, a walker, a cane, walking, not being able to talk, whispering words that didn't make sense, whispering, talking, laughing again, thinking and smiling and now finally to:

Dancing and spinning in the snow!

Happy New Year everyone!

Here's to freedom of the past and a new beginning. Let your past hold it's name and let it be the past. Open your life to new beginnings and dance in the snow!

disclaimer- I do not go outside in very cold weather without bundling up often.

I write tonight with an overwhelmed and thankful heart

I don't know why I want to write a blog tonight but I know that I want to-

Have you ever had a moment, day or week that just didn't seem to be going how you thought it would? Did you ever feel left out or lonely?

I have had an overwhelming amount of emotion pouring out of me lately both of thanks, frustration and pain. I can't even begin to explain how much I have been hit with thoughts of getting better if I moved away to a treatment center. Pain in my stomach nothing there, feeling crazy trying to ignore it only to find myself in a deeper world of confusion. I don't really know if there is anything that can explain what I am going through I don't think there is a cure but I do believe in miracles.

I see people sad I see people complain about pain or aches and not feeling like they can stand and I sit and I wonder how much did I gripe and complain before I went through this. Yet I know I still do. I wonder in amazement how much this disease has changed me- how much I love life and notice more and more how short our days are. I just think we can't waste this precious time we do have for it shouldn't be taken for granted. I love life and I love the ability to walk. Today I broke out in a run yes, a run not a short paced thing but a run and it made me feel so full so complete and so blessed. Even last week I don't know if I had the confidence to walk without assistance and now, I am daring to run? Yes, I have fallen and I know it is dangerous to me- but I did it and I felt very accomplished and full. I was quite excited actually. I have also come up with my last two wishes for Christmas.

My biggest wish is to become a better person and seek more in God and less in people. I don't think I need to worry about what others think because it was the people who dared to be different and dared to step in the dark that let light on things that were "impossible". One of the Wright brothers said that he didn't think humans would fly for another 25 years and he contradicted his statement soon after. I am amazed I am at peace and I am finding, I want to share love and peace with others. It is a scary world as I have said before one of quick accusations and few long term friendships. One of hate and accepting of wrong things. I just think in these next few months as my advent to Christmas, instead of a gift to me- I am going to give a gift to others and work to make peace throughout other things.

I just want to say, thank you to the person who made my prayer shawl- thank you to those who have helped me come this far. There have been many who have shaped me and loved me and shown me what true compassion was. Tonight, I have yet another spot-light person

Kori-
Kori is a lot like me, we joke saying we're like twins. I met her at camp and since then I would consider her my closest friend, mentor and advisor. She is the kindest person she is gentle and she is wonderful in so many ways. She gives me undivided attention and loves me like a sister. She has shown me the world through different eyes, although she is realistic she shows me life through happiness and love. She knows how to make me laugh and she shows me aspects so that I can see things more clearly she defines things and she encourages me to go the extra mile in what I do. She has blessed me with her friendship and I can't even say how thankful I am to have her here for me. She is going to school to be a nursing student and I think she will make a fine one at that- although sometimes she is stressed, she can always make a little time to chat. She is my best friend and I don't know what I would do without her. She is fabulous and she shines through everything she does. Thank you isn't enough but it's all I have- so thanks.

I have one thing I would like to put in lastly, something that weighs very heavy on my heart. I know that I have readers both from near and far and I would like you, if you see this to pray for my small group leader- Jessica. We don't share things out of our small group but this week is going to be stressful for her since she still does have school since she is in college. She is facing things that are going to be difficult for her, I pray for wisdom and peace of mind as she goes through this week. She is a remarkable young lady and she pours her heart out to our small group. She really deserves prayer.

I am thankful for so much I hope you're finding thanks in your life to- God, thank you for my legs and ability to walk, you're my hero.

Still standing- small steps

I am still standing taking a few small steps. Life isn't as I would wish and you know, one of my things that is really bothering me right now- is that my room is messy. It's not too messy just messy enough that there isn't a lot of space to put things there are items being stacked up on my bedside table and my desk. I just don't know about this clutter. Although it's hard to maneuver balance and cleaning. So I guess clutter can rise until I am up and ready to clean.

To be honest my favorite season of all is coming up. I love holidays but most of all I love giving gifts. I love coming up with unique ideas to give a special gift to someone who has touched my life. I don't see Christmas as a time of receiving but a time of giving to others. There is no better feeling than seeing them light up their faces. I guess to be honest I just love any day where I can give someone something that brightens their day. It doesn't even have to be Christmas.

Today my friend and I were talking about things we would like for Christmas but would never ask for and I said I didn't really know... I said I don't really like to ask for anything anymore but we pondered our favorite stores like for me I have grown to love Etsy, and Delias and different places like that. I like things to be unique and different. She was a little more classic with Amazon and her desire for little things like that. I really don't expect much for Christmas this year I told her but I think this year I am going to put time into some very nice handmade gifts and I want it to be the biggest year I have ever given. I want to make lots of things for lots of people. :) I am excited.

So today that is my encouragement. Thinking of happy people with cool gifts for Christmas this year. I guess since I have been down and out and today really kind of sad just bummed about how things are turning out and how I haven't really been feeling good. I feel like the pain really never does stop sometimes all I want to do is cry but instead I laugh. Today I changed the song that plays on the website if you have a moment listen to it because that's how I feel today.

Spot-Light

Vaughn VanSkiver- Okay so he might be random to some because to be honest he hasn't been in touch with me as much as so many others but for some reason he always is brought to me in my memories. He is the worship arts pastor at our church and he always has a great sense of humor. I can sometimes find myself laughing about something he did years ago laying in bed years later. I am so blessed that he has been in my life and he has honestly just really touched my life. I guess I just can't explain it but I would like to say thank you to him.

If the world grows don't stop growing

Okay so if you were laying looking at this you would be inspired to get out of bed too. Not to say that I don't have a pretty rad room and that I don't love it because well lets be honest here I do. But sitting in bed is lame and I needed to get my groove on. So this morning I stood. It's weak it's pathetic but it's standing nonetheless.

So my mother called me this morning which is really almost afternoon and was wondering how her sickly child might be doing on this drab but beautiful day. I said I was doing good and then she did some arguing or something of that nature about eating. My stomach aches, my head hurts, but I can stand so the day is good. I inquired about going to school tomorrow although it would be with my wheelchair it would be nice to attend school. I have protested getting a wheelchair pusher so we'll see where my mom makes it with that situation. Otherwise I will wait until I am a bit stronger yet and can go without it. Which will be longer and longer without school and longer of missing class which would be lame. Costing the school lots of tax dollars for silly tutors because of course I am taking an ACE class so I would need a smart tutor not just one that can slip under some door crack. Yes, this much is true. So they really might have to break down to my request of no wheelchair pusher since my doctor has okay-ed the situation.

Now I have decided I would like to get some work done perhaps some art and then reality will hit with some bonding time with my economics book.

Don't let the world grow around you but grow with the world.

So I shall not sit here any longer I have to catch up with my sick day yesterday. I am constantly reminded God has big plans and that he does. I am still kind of noise sensitive so-
please use indoor voices.

A cheerful Victoria

Lights, Camera, Action!

My people of note:

Mrs. Malloy: Well if I could say there was just one art teacher that has really been wonderful to me it would be Mrs. Malloy. She can almost sense me being ill and she has kept up with me and encouraged me on down days. When her family has a billion other things going on she still has the courage to keep up with me and help me out in any way she can. I have been so inspired by her art work and what she does. She is such a wonderful art teacher and she was the first art teacher to open her room to me when I realized I would have an activity for the first time the whole time I was in high school. She is a wonderful woman and I am so thankful she is in my life.

Mr. Hart: Mr. Hart was my art teacher my freshman year. He had my sister as a student while she was in school and he is probably one of the most unique people you could meet. Although I have noticed his personality might ware off onto other people. He is the biggest critic you may ever meet but behind his mask he shows compassion towards his students. Although sometimes he frustrates me, he has shown his genuine compassion towards me through making sure I am safe in where I eat my lunch and he is always trying to keep up to date with how I am feeling. He is also a very talented artist and has many of his paintings at the West End Gallery.

Mrs. Harrington: Well, Mrs. Harrington is a bright woman and she adds color to a room when she walks into it. If I were to describe a personality with watercolor hers would be the most fun to put together. She is a wonderful teacher and mentor to her students. Although sometimes it seems she is much to nice to her students she has shown genuine compassion and love towards her students. I have been blessed to be in her class and this year I am so excited to be learning about many different mediums in art.

Mrs.Palumbo: I have never had her as an art teacher but she is a sweet person she has been kind to me upon coming into the art rooms for lunch and she offers words of advice when I bring in my photos for my portfolio. She is very creative and a kind woman.

I guess the biggest thing about these four people is they have instilled change and compassion into the lives of the kids in the art department and I am so thankful to have them in my life.

Where did normal go?

A tear falls from my eye and my heart feels so broken.
I don't understand this great big plan God- I don't understand what you have in store for me. I know you are there I know that you care... But today I just don't understand.

Excuse this post as I vent-
Seems as though life comes at you like crashing waves there are small ones hitting your ankles crashing against your legs. You can feel them but they hit you and the sand slowly gets pulled away from underneath your feet. Without noticing your feet are slowly becoming more and more unstable with these little waves here and there. Then after a long time of little ripple waves a bigger wave comes and crashes into your legs it hits and knocks you a bit and you almost lose your balance but all of a sudden you realize that your foundation is weakened. Although you have sat so long noticing nothing now something bigger comes along and you notice your foundation weak. Another wave comes crashing into you this time knocking you over. You lay upon the ground. You sit there letting the waves devour you.

Today I feel alone I feel helpless in a hopeful world- I do not have sight of the future or God's plan. I know it is there I know it is large. Some say it is so large that if he were to tell it to me today I would deem it impossible. I lay in bed and wonder... God I have given you my all why do the waves still crash? Why do painful jabs still strike? Who will be the first to drop their stone?

Spot-light people have been absent lately and I feel today I need to put a few in my entry:

Pastor Tony- He is our youth pastor and it may seem cliché to put people you would expect like a pastor or a parent an aunt or an uncle in as a spot-light person. But Pastor Tony has amazed me he works hard at his job and touching the youth. He has been there for my family so many times and he has known when I need prayer. In fact it seems as though he is constantly offering prayer and love to me and so many others. He is really an awesome youth pastor and I know for a fact God is doing great things through him for me.

Betsy Wipfler- Betsy is a beautiful girl she has a good taste in music. She was one of the first friends I had in high school. My freshman year she was the girl who carried my books while I was on crutches. She was a source of encouragement for me and although our paths have parted she is a wonderful person and she has left an impact on my life that I will not forget.

Jess Piranio- She is my small group leader she always tells us girls that she loves us so much and that she cares about us. She tells us to feel free to call her any time and I guess it's hard to believe that when the whole world is walking out but she has shown that to be true. I have grown to love having her in my life these past few months and I feel more connected to her than ever. She seems to be able to connect with me to share moments to understand and help me cope. She is a wonderful person and I am amazed by her love and compassion towards our small group as a whole. She has such a wonderful personality and love for God she is realistic but she is not pessimistic. She is lovely and I can only say that some day I hope to have an impact in the life of girls just as she has had on mine.

Have a wonderful day- hopefully walking will be back soon.

Splendid Saturday- Posted on a Sunday!

two teens, a yellow dress, a parade of carpenter ants, a case of uncomfortable shoes, 92 bobby pins, and loads of fun. Resulting in a night in the tropics!

Can I just say- Oh what a lucky girl I am! :)

Yesterday was filled with everything that could make me completely and absolutely exhausted but I loved every moment of it. It was everything I could have planned in a hospital bed and even more! For in my hospital bed I never dreamt I would have a date and even more than that a date that was so kind and compassionate like Jake was to me! It was such a lovely evening.

We started out at my house with pictures with the parents... It was really nice and not too stressful! We got lots and lots of pictures though I think Jake and I were almost always looking at opposite cameras there were so many camera's to look at! This day really felt like a mile marker for me. In my health and in my life in general it just made me really realize how far I have come from being on the verge of always being in the hospital to actually being able to visit the hospital without the bells and whistles of an ambulance and an oxygen mask!

Although I have to say there is one thing that will never be the same and it's the time you lose when you're not in school. It's the thing no one can replace nor can they take care of- I felt like a stranger with the kids I've went to school with for at least 3 years... Just maybe not physically and been in the district for 12 years. It was the weirdest feeling I've ever had. Weirder than getting a picc line pulled!

There were sooo many people who made this day possible I couldn't possibly begin to name names... For if it weren't for the EMT's who responded promptly to each call that I was on the end of, or the nurses who jumped into action while I was seizing, or the doctors who knew just what medication to order. This day would most definitely not be possible.

There are some other people that really made the day extra special and they are the people I call family. I was able to say my aunt did my hair. Not some stranger at a beauty shop but my own aunt. I was able to say my professional photos were not those done with artistic creations of a professional that I paid $50 for but the photos were the creations of Jake's father and my family. Making them a little more personal. I was so blessed by having my father and my mother and my sister all together for me. And having my grandparents come over was a nice treat as well!

After we had our photo's taken at home we went to dinner at The Hill Top Inn.

http://www.hill-top-inn.com/ Which was a complete and absolute surprise to me! I had no idea where we were going and we went to a gas station before we went to dinner and we joked we were having Pizza Hut express or Subway! :)

Afterwards we went to the hospital to visit the nurses and then visit my two favorite 4D patients the two Roses! :)

Then we got to the prom and although by the time I got there I was quite beat we made it almost to the end. I was very tired by the time I got home but still filled with lots of nervous energy. It was a wonderful evening and even though I wish I could have danced a little more or been a little more comfortable with the people around me I was very happy to have gone and know this can only be the beginning of gathering a control over my Lyme! :)

Thank you so much for all the prayers and continued prayer. I promise you it's working.

Today I give a spot-light to one of the most influential people that have been in my life thus far-
My grandma Wilcox. Her name was Laura Wilcox and she lived her life for others. Today as we thought in church about what filled our box in life- I would have to say her box was filled with love, a little pinch of big eyes and a large amount of prayer. She was always baking or knitting and knitting Christmas stockings is what she loved to do... I will never forget her large collection of aprons and the unique toys that harbored at her home. She was such a wonderful woman inside and out I find a tear on my cheek as I write about her. My grandpa today- my mother's father was looking at the photos and when her name came up he said oh how she would've loved to see this day! And it brought back so many memories of cooking bread together cutting cookies and learning how to peel potatoes. I am so thankful that I got to have her in my life and I'm thankful for the fact that I know I have her looking down on me and all I can say is- Grandma- you won't be disappointed.

More Photos Below! Enjoy!

And for my grandpa- Where is this Arbor located? I just can't think where it would be!

Doctors, Doctors, Doctors, MRI?

Today was another day filled with extreme amounts of on the road travel thank goodness for my ipod and the little sleep I got while we were out.

I had a chiropractor appointment in the morning and then my mom surprised me with a little trip which surprised me even more upon getting out of the car-

As we were walking a slight incline I noticed the great difficulty I was having walking and all of a sudden found myself yelling to my mom and reaching for her arm. I couldn't walk my feet were dragging underneath me and I was not sure what was happening. It scared both of us and I found that I will definitely have something to talk to my Physical Therapist tomorrow upon my appointment.

Then later tonight I had not one, not two, but three MRI's!

We are doing more extensive testing down my back and everything else to see if anything else can be caught. It was quite a lengthy process and my hand fell asleep while sitting in the machine for so long but I am glad it's over and done with.

I continue to be amazed by the people brought into my life and do not believe in accidental meetings. I am filled with support by others and the generosity of complete strangers. I am so thankful for this because it seems as though when all is falling through a little light is shown. My memory is slowly getting worse which I don't understand but I am starting to forget things a lot quicker now than ever before. I hope this comes back with time and I continue to stay strong.

I thank the kindness of the people who have been brought into my path and continue to stumble upon my story. Let it be a reminder to you as the summer arrives to do a tick check and have a wonderful summer enjoying what you love most!

- Victoria

My spot-light person today is-
My Chiropractor, My Chiropractor has gone above and beyond what many doctors wish to with just taking me on as a patient he also seeks answers for questions we ask and continues to amaze me with his kindness and generosity. He is a great man with a good sense of humor and has helped me a great deal with the pain that I face. I am so thankful that we have found him as a chiropractor and I am so glad he's so willing to help me and now my mother is going there as well! So here's to a great Chiropractor!

Behind that Face.

Behind that face comes a lot of teen things don't get me wrong...
In a world of normalcy there has to be some upset to make you grateful for what you have to feel blessed for the days you live and complete with the desires within.

Tonight- I looked through my journal and I am writing about the things that don't make it to the blog.

Butterflies in my stomach, giggling at the computer screen, and laughing so much more when he's around. I am noticing I have a whole new hope today a whole new perspective something I didn't think could be came to be. Now I am learning things a different way.

Prom is nearing and now is a week away things like a boutonniere and nails, and hairstyles are not a fantasy any longer but now a reality. Prom is coming I have a date perfect in my eyes and perfect for me! Excitement fills my heart as I get ready for the big night and all our schedules are planned around May 17th in the days coming before... Making sure I don't do too much the night before resting as much as I can and taking care of my body as I always do.

Studying is especially hard for me these days I have read the same page for 2.5 weeks, picking up the book to study some more realizing I am no further in the chapter but I don't know what I've read. It's difficult because I don't even remember what I said just hours ago on the phone with my boyfriend... How can it be? I hope he doesn't see- that I am not 100% me!

School papers are being written at a slow steady pace things are being done but not quick enough for me. Slowing down is difficult when there are deadlines to be met and goals to accomplish. Sometimes it's just a little too hard to keep things at ease when they aren't at ease at all.

Behind this teenage face comes so much more than a disease- So for those of you who do not know me but come to this blog for one reason or another, for hope, encouragement, an update of some sort here is a teenage way of putting things about me-

I like to...

Paint
Write
Laugh
Help others
Sing
Talk
Finger Paint
Babysit
Run
Eat ice cream- my favorite is soft serve twist with rainbow sprinkles!
Take pictures
Read
Learn
Rollerblade

I Dislike...

Ignorance
The sound of an emery board
nails on a chalk board
Being competitive
Misunderstandings
Distance

A fast track on the last week-
I have been okay.
Not doing great and struggling with a lot of things. Eating still isn't a top priority to me now more than ever it seems I have been fluctuating with my weight and it's frustrating to see. We're getting some things under control while other things go completely out of control. I am so blessed with the people around me and I am encouraged by others on a daily basis. It's exciting to see my life unfold. Although scary to think what could be next.

I was graced with the song "Gratitude" by Nichole Nordeman

Send some rain, would You send some rain?
'Cause the earth is dry and needs to drink again
And the sun is high and we are sinking in the shade
Would You send a cloud, thunder long and loud?
Let the sky grow black and send some mercy down
Surely You can see that we are thirsty and afraid
But maybe not, not today
Maybe You'll provide in other ways
And if that's the case . . .

(Chorus)
We'll give thanks to You
With gratitude
For lessons learned in how to thirst for You
How to bless the very sun that warms our face
If You never send us rain

Daily bread, give us daily bread
Bless our bodies, keep our children fed"
Fill our cups, then fill them up again tonight
Wrap us up and warm us through
Tucked away beneath our sturdy roofs
Let us slumber safe from danger's view this time
Or maybe not, not today
Maybe You'll provide in other ways
And if that's the case . . .

(Chorus)
We'll give thanks to You
With gratitude A lesson learned to hunger after You
That a starry sky offers a better view if no roof is overhead And if we never taste that bread

Oh, the differences that often are between
What we want and what we really need
So grant us peace, Jesus, grant us peace
Move our hearts to hear a single beat
Between alibis and enemies tonight
Or maybe not, not today
Peace might be another world away
And if that's the case . . .

(Chorus)

We'll give thanks to You
With gratitude
For lessons learned in how to trust in You
That we are blessed beyond what we could ever dream
In abundance or in need
And if You never grant us peace

But Jesus, would You please . . .

This song got me a thinking- If I can't have my 100% health I do have the health I have and I cannot take that for granted for I must keep pushing on and keep what I do have in tip top shape to prepare for whatever may come my way. For God may not send what I ask for but he will send what he believes I need. There has been not a day that I have not had a roof over my head, a bed to sleep in, or food on the table and for this I am blessed.

Good Night!

Victoria

Spot-Light
You. Whoever you may be tonight you're in the spot-light. You are in the spot-light for listening to my thoughts to this point to be at the end of the blog and showing your support through reading my blog. Thank you for coming here thank you for being here and the numbers on my little counter show- people are visiting here! I invite you who lurk in the shadows of blog world to come out and say hello! Introduce yourself. Here's to a formal invitation to say hello! :)

Medical Monday- I have decided every Monday I will post a medical update on what is going on thus far.

First and foremost HAPPY EASTER- I hope every one's Easter was spent with loved ones and family. I know our Easter went well, and I hope everyone was happy and healthy throughout the day.


"Keeping looking up... that's where miracles come from."

Today I had an appointment with my PCP and I am just updating those of you who follow my journey medically with the past week-

We have been using my peripheral veins for IV's and they are going to continue to use them until we get further information from various tests that will be performed within the next few days.

I have been having increasing abdominal pain especially in my stomach cavity which brings concern to problems with my gallbladder. It especially increases with eating and is tender to the touch- after an evaluation from the doctor he feels it might be my gallbladder and wants to check it out with an ultrasound. He also is checking my liver function and depending on these tests depends on a lot of major things-

If getting a port is necessary

What the next action steps may be

If we choose to get my gallbladder out, to continue Rocephine or start something else...

If my gallbladder is going bad- we will probably discontinue the use of Rocephine but if all shows up well, we will be able to continue the use of it. Which is good because it seems to be working well. But a little scary for me since I am still not sold on the whole idea of the port...

Although we cannot rely on peripheral veins forever because many are shot due to increased usage and lots of pokes and have become corded veins which simply means scar tissue has built up around the veins causing it to be difficult to get into the vein. It can take up to 2 years for these veins to heal but they can heal over time. So with that after finding out the results of the tests we should know better if we will continue this medication or be switching and getting a consult with our LLMD about the action steps that should be taken next.

I have also been consulting with our homeopathy chiropractor in Owego and he has given me some supplements that will help with yeast problems and help with other things that my body seems to be lacking. We are all keen on him helping us and thus far he has helped me greatly. I wish we had went to him sooner! A few days ago I complained of my elbow bothering me, come to find out my whole elbow was out of alignment! Needless to say now a few days later my elbow is feeling much better!

Physical Therapy is helping me feel steady progress I am pushing myself a little to use the cane more and the walker less... Not only is it more convenient but it's also giving my muscles more of a work out. Although I think the walker might be used a little more tomorrow around the house because I have used the cane so much I have been a little weaker. Due to my lack of scheduling I was not able to get into Physical Therapy this week with my usual 3 appointments but will be called if there are any cancellations.

On the Spot-light-

Today the spot-light person is Abbie. Abbie has been in my life since I was a little girl and after having Spanish 4 together we started hanging out again. She has a sincere heart and is very kind and loving. I am very glad she is in my life not only does she come to the hospital but she is always trying to cheer me up and she has had me over to her house a few times, given me rides to school early in the morning (when I was still going hehe), taken me to sparkle, and most of all helped me feel a little less abnormal. She's an awesome person and I am so very grateful she is in my life. She can always make me laugh and she even tolerates me when I insist we look up what the names were of the baby spiders on Charlotte's Web! For all of you who care they are- Joy, Aranea and Nellie. :) She is an awesome girl and a wonderful athlete and totally rocks at dying eggs! hehe.

The Truth About Physical Therapy

So today... I came complete in workout gear if you notice on my right wrist there is a sweatband and there is another blue one on the other side. My Physical therapist gave them to me (Burger King special). The nice work out socks "those socks just never go out of style! I wore the same exact ones my senior year of high school in basketball!"- Another Physical Therapist, the short shorts andd... T-shirt oh and we musn't forget the headband thing that drew quite a bit of attention. Maybe another day I will have a close up of the cane for everyone to see it's beauty. I got a lot of compliments on it today. To the left of me is my lovely Physical therapist Jenn. She is looking all pretty and I was gross because I had to work really hard and this photo was taken after...

I am officially half time cane half time walker. And I am just going to leave it with glorious Physical Therapy today because the rest of the day has been crappy and I am sick of being sick. But that was most definitely the highlight of my day.

Lucy Mooney-
Is the spot-light person today. She has helped me overcome many hurdles and she also keeps me thinking of a bright future. She has overcome Lyme and is in remission I guess you could say and is working on building up strength to become a normal teen again. She's a very positive person and has helped me notice things in myself and helped me feel better even when I have been completely down at the bottom of my bucket. So she deserves some credit and definitely deserves the title to be yet another inspiration.

Jenn if you have issues with the wonderful photo of us you can tell me about it tomorrow in Physical Therapy. :P

Re-Vamp of the blog

A few of my friends said my blog needed some re-vampin' so today I went on a quest to re-vamp my blog. So now with a new format and basic color for all of the posts... I have re-vamped the blog. This was pretty confusing for me so don't expect it to happen again! haha

The winter days are quickly passing and I can only hope that warm weather will be here soon to ease the aching joints and bring spring delight! I can't wait to see the tulips bloom again and soon the pot garden we are beginning will be able to sit outside in their pots and bearing vegetables of all sorts. For those of you who don't know- as a symbol of new beginning I have started a salsa garden and let me tell you the Roma tomatoes are growing like nobody's business. I hope to add some herbs and other veggies to our little indoor garden but right now I do believe we're working on 7 different types of seeds and they seem to be growing well. I will post pictures in another few days.

Physical Therapy was yesterday- and get this: I ran out of sweatpants!! So I couldn't really go with my work out gear in jeans so I decided that I would wear super cool socks instead and that's just what I did. Although I have some plans for the upcoming session tomorrow and it has been confirmed that I do have clean sweatpants for the event. Although I am improvising a bit due to the fact that I don't have a head sweatband but oh it shall be good. I also finally gave my physical therapist my blog site so she could check it out... So now she's probably reading this either approving or disapproving of all I have said about her. I am sure I will hear about it. :) We may even have to take a photo of the get up from tomorrow's session. That's just how good it's going to be. I have been progressing well- she has taught me how to walk with a cane and yesterday my dad took me to the store and we got a pretty fancy blue cane with white flowers on it. So I can practice around the house. Although I am noticing when I get tired that the walker is very handy to have because the cane isn't giving me enough support. But I am getting stronger which excites me.

We have yet to hear back from the doctor... He is trying to create a plan for us and we were told we should have it by Tuesday night- here we are it's Wednesday and we do not have a plan. So I am not sure about the IV things but I am going to the infusion center now and they have set it up to go through there rather than Pediatrics. So that's the plan at the moment since I do not have an official one I think that's the plan anyway. :-P

Things have been so chaotic I have been overwhelmed with my own life and any friends that are still talking to me I am amazed... Because it has just been so up and down. ER visits, hospital time, doctors appointments, Chiropractor appointments, and Physical Therapy. I am at the hospital every night now, I have to go to Owego 2 times a week right now for the Chiropractor, and I have Physical Therapy 3 times a week, plus my PCP throws in appointments at least every week or every other week it seems... So for those of you who thought it was a lot of sleeping being me- it's becoming more and more car rides and lots of appointments.

More than ever in my life I miss my old life and being sick is just kind of wearing on me... Mostly I think because I have lost contact with a lot of friends that I was talking to to frequently because I used to be the first person to contact them and now that I rely upon others to contact me... They don't really do it as much. And I don't have the time to sit down and actually think about calling people plus the service in the hospital is horrible. I guess you're not even supposed to be using your cell phone in the hospital but no one has ever said anything to me...

S0 that pretty much sum's up what has been going on lately. I am preparing to talk to a class the 26th (next Wednesday) as a favor for one of the teachers at school. Which I am excited about plus it will get my butt out of bed a little earlier.

My Spot-light Person for the day-
is continued from the other day. Jessica Stevens- This girl deserves two days of being spot-lighted and also needs lots of prayers. She has helped us immensely with my walk with Lyme and has become a close friend of mine. She is very confident in her faith with the Lord and despite her being so sick she has been able to continue with a positive attitude... She just had her 20th birthday this past January and she continues to fight on despite doctors saying she probably never will walk again and she is probably the worst case of Lyme I have ever heard of. She has so many problems but they don't stop her and she has kept on no matter what. And she gives me even more of a reason to fight for awareness and gives me a reason to keep getting better. She is such an awesome girl I can't say enough good about her! But most of all please pray for her- she is in the hospital and she's going through some very very complex procedures that are rarely used. Thanks for your support!

Hope everyone is enjoying the sunshine and have a wonderful day,

Victoria

I write from my heart.- I am not holding a thing back.

Okay so today has been absolutely insane. I am writing tonight from my heart. This is what it's truly like being in my shoes for the day.

The beginning of the day I stuffed envelopes for the walk and lined things up for the meeting that night.

Physical therapy went very well today I did very good and learned to walk with a cane! It was exciting and I even added some wrist band sweatband thingeys to my Physical Therapy wardrobe. I worked harder than I had ever worked before on the bike and I worked with all I had. I did a lot of different things and it was exciting.

I felt a little better after physical therapy and was noticing improvement. I was noticing little things and I felt like finally after so many days of not feeling myself I was beginning to notice a step in the right direction perhaps a glimmer of hope.

I began to become a little weary and soon I was teary... I was not feeling so hot and I had a meeting to run for the walk that night. My IV was taking a little longer and everything started to spiral out of control. Soon I didn't know if I could be on time to the meeting- I was supposed to be there at 6:15 to meet Sarah so we could talk. Being worried about the picc line my mom was to change my dressing and she was and as she changed it I saw something that made my heart flip. There was puss coming from the site and I was scared to death. Infection in a picc is not something to mess with. My mom called the hospital did everything she could and I was worried that this picc would be out quick and a port would be the new form of treatment.

I am scared to death of getting a port- I am scared of every aspect of getting a port and no matter how much good people tell me about the port's I am probably still going to be scared.

My mom covered my dressing but upon covering my dressing we noticed a little ghostly looking airplane shape on my arm where the white airplane had just been.... We noticed wherever that was placed it was killing the skin beneath it and causing fluid to seep from the skin. My mom and I both began to think I was allergic to the line itself.

I was overwhelmed and for the first time I couldn't be strong I couldn't tell my mom I was okay and I began to cry and cry. I was so upset and so frustrated why can't anything just seem to go well? After all the hospital has told us that there was only one other case like me and come to find out after they figured out what was wrong with her picc she died! I was so overwhelmed with emotion yeah things weren't going smooth and I had a meeting to do and I was not ready for it at all.

I was frustrated with everything and an emotional wreck and I didn't really even want to go to the meeting but, I had a lot of stuff to deliver to the meeting so I had to go. So coming late I went and I didn't plan on staying long...

I handed out what needed to be handed out. I was in tears yet again and man there was no stopping them for the first time in my life I wasn't able to be strong and I felt horrible and my picc line was scaring me and yeah I didn't know what to do or who to turn to and I was crying in a room full of people! I was embarrassed to say the least and yeah tonight just wasn't turning out to be such a good night.

I wanted to disappear and then my mom got a phone call from the hospital and I had to go to the ER and let me tell you that's my least favorite place to go and everyone in there is so sick! Thank God they worked with me and got me a room quickly I was loosing my patience and loosing control of my calm quiet attitude I can usually obtain through these ER visits. I was stressed to the max and at any given moment I would just burst into tears. I just want to be a normal teen I wish my health was better and why the heck do I have to be back in the ER once more? I didn't understand and I couldn't figure it all out I was so sick of all of this medical junk. I just wanted out of that place out of the hospital and I wanted to be free of my IV and on with life.

Of course this isn't what was going to happen and the IV therapy lady had to come down and yes, it was one of them I knew come to find out I know all of them now and all but one has put a picc in me. I was so overwhelmed with everything by the time she got there I didn't even recognize her but she recognized me. I am a one of a kind patient with so many allergies and different problems and after all I have now been labeled a "complex case". So yeah everyone in the ER can know me by name they know my story and they can tell when I am not having a good day. I begged to keep my picc in over the weekend and they're doing all they can to do just that.

They cultured the puss and they put a special cream on it (something we know I am not allergic to!) they are going to re-evaluate the situation tomorrow morning and see if it has changed for the better or if it's heading for the worse and depending on the sightings from tomorrows evaluation depends on if I get the picc pulled or it stays in. Although since the IV team believes that I am allergic to the line they will probably have to take this picc out and I will probably end up with a port.

My life has been spiraling out of control and yeah there is no stopping it because when life takes over- all you can do is take it as it comes.

I had texted a few friends and I find it's even hard for them to keep up with my constant changing situation and it's hard for me to constantly update everyone. I don't know what to do and I feel completely lost. I keep praying and I know that God will pull through. I just don't know why this isn't working out better. I have seen many of my friends take the easy route out and they have drifted off and kind of are on a touch and go basis we talk a little here and there and a lot of the contacting is done by me. I miss all of them so dearly but my medical life is sincerely taking over!

I feel like I am in over my head. I don't know it's just an extreme thing and this just goes to show you that an ordinary day can be changed so quickly into a trip to the ER and a fast paced slip down hill. You can think you know what's going on but really there is truly never a dull moment. I miss my friends and it hurts me to know that they are all going on with their lives they are all going on with what was meant to be and all I can sometimes think is- that could be me too... If only I were healthy.

It's hard for me to understand or even comprehend what is going on in my life right now and yeah tonight is a real deep reality check for me and there were not many inspirational things said or happy moments as the day progressed. Things weren't easy but I got through them. One thing was said today that made me cry and that is that one of my Lyme mothers told me I was going to find a man and someday be married to a guy who cared for me and loved me and really genuinely cared about me and what I wanted to do. She told me what an amazing girl I was and comforted me and let me tell you sometimes that's all I need because I am so hard on myself I don't see the things others see. Yeah I was at the bottom of my bucket tonight and to be honest- I am only sharing this to you because-

beneath the surface of a happy face is a hurting child and I am not 100% happy and cheerful and even though I am not in the hospital my life isn't a perfect puzzle.

I am struggling each day and some days it's difficult to even get out of bed. I just miss being who I was before this disease even happened and I can't wait to be better. I want to make a difference and I am sick of being stuck home due to some medical condition or having plans ruined because I got too sick or having people fear me because I have had some not so ordinary things happen to me.

I would normally apologize for being such a mess, but I am not sorry because this is really what it's like and it hurts a lot. I don't know what the next minute or hour holds for me but I do hope it's peace and sleep because it's been a long day and I have a feeling the next few days won't be easy.

So this is a glance of what it's like to be me. It's not fun but I try to make it fun as much as possible and I try not to dwell on the horrid things that happen but tonight that's all can do because I am a mental mess and I cannot stop crying because I am so sick of being the sick kid.

More positive days to come,

Victoria

P.S. There are a few people I would like to put on the spot-light but because my mother said she didn't want lies on here (even though they aren't and she really is an amazing woman) I will not include a bio but tonight- My parents are my spot light people and they are truly amazing because there are very few people who have been able to stand by me for the last 3 years of my life and they continue to support me and love me.with all they have and without them I would be nothing. So they are the spot-light people.

Goodnight!

“Rivers know this: there is no hurry. We shall get there some day.” - Winnie the Pooh

Okay so I had physical therapy yesterday and there is no way possible I can go on blogging without telling you guys how much fun we have at physical therapy. My physical therapist is Jenn (yes with two n's I double checked just to be sure.)

She isn't even my spot light person but she's a really fun physical therapist. She has slowly been helping me get on track and helping me re-gain muscle tissue. We have done all sorts of things and it's quite a work out! Physical therapy is my favorite place to go and I am not just saying that- it really is the only place that you can go and actually feel and see your improvement from each time you visit. Right now I am going 3 times a week and we have a good time.

We have a good time because of course nothing in my life cannot be a little fun and she's also got a sense of humor. One of my first days I went to physical therapy I walked into the room to see a man wearing exercise gear. I laughed and said that I too wanted exercise gear for physical therapy.

My last session I went with sweats and a t-shirt and each time I go one more "exercise" item will be added. It's funny for us and I can't wait to ditch the walker.

Although going in my sweats this time made me feel a little different walking into my Youth Pastor's office because usually I am a little more dressed up than sweats and a t-shirt. So I just said I had physical therapy! DUH. hehe.

These last few days I have been doing a lot of thinking trying to find the real me. I have been doing a lot of different things and doing a lot of listening and a lot of talking.... I really feel the future that I have in store for me is very exciting and I cannot wait to see what happens next. The unknown can be one of two things- For most the unknown is something we fear and are uncertain of but I choose the other choice and I am excited to burst through the unknown doors.

I mean what is honestly so scary about the unknown? Maybe we can't predict it but it is definitely something we can find out about very soon. I am starting to have more confidence and more excitement and I am really excited to see what the future holds.

Lately I have been sleeping a ton which is part of the reason my blogging has slowed down I sleep almost all the time it seems. I slept last night from right after my IV til 10PM then was back in bed at 1AM then was up at 7 AM then went back to bed and slept til 2PM. All other days have been filled with sleep too. I hope this is my body's way of healing itself and soon I will be back on my feet (without a walker!)

Now I guess this blog wouldn't be complete without sharing the news as of yesterday- As you know I went to meet with my Youth Pastor while I was there I told him about what had been going on in my life what God was doing... He was amazed and I do believe a little teary eyed at points but hey that's okay I have been in the same place sometimes. Now this is where the heavy load was placed. He asked me to speak to our youth group. Now as you may not know I am not very familiar with our youth group so speaking with them makes me a little uneasy but I agreed. Then to top it off he asked me to speak TWICE!

Within the next few weeks I will be speaking to the Junior High kids on Sunday morning then-

All of my friends, and other teens that read my blog mark your calendars- I am also speaking at the Mix: April 27th at 5:57 in the PM at Victory Highway Wesleyan church. (http://www.victoryhighway.com/index.htm) I am a little antsy but I have a presentation ready to go. So all Senior High Students mark your calenders and come on out. The Mix is a really neat teen driven night at church and even though due to my health I can't go as frequently as I would like it's a lot of fun. There also will be lots of other teens there! Who knows you might even make a friend.

My spot-light person for the day-

This one took some thought. But I believe that Fahris Wyand is my spot-light person for the day. This little girl is 4 years old and has battled more than many 40 year olds. She is a great kid and probably one of the most beautiful children I have seen in my life. If you can get her to smile you will see she a brightened little face and to be honest when I see her smile I can only smile back. We met in Rochester when I was going through the Long Term Monitoring on my brain and Fahris was recovering from heart surgery. I had made all of the kids on the unit get well soon cards and her parents were one of the few that came by to say thank you. Fahris is an inspiration because on the outside she is absolutely perfect 10 fingers 10 toes beautiful blonde hair a cute little giggle and a bit of an attitude. On the inside however she has- Subaortic stenosis, dextrocardia (heart is on the right side of the chest), hypoplastic right heart(underdeveloped rt. ventricle), pulmonary atresia (lacking a pulmonary artery to take blood to the lungs),VSD (a hole between the pumping chambers of the heart, and as if that's not enough her blood return from her lungs was carried to the wrong side of her heart... After I met her family I quickly signed onto my computer and looked up her story and over time I have began reading every journal entry as soon as it is posted excited to see her improvements, and sometimes in tears reading a set-back. Her story gives me hope because despite being so small she has had a huge impact on my life and she is an amazing child. The latest journal entry left me thinking and made me want her to be the person I placed in the spot-light. This girl needs prayer like so many other children and I hope you will add Fahris to your nightly prayer because this girl sure does need it! Below I have placed the journal entry her mother most recently posted:

"Another week is passing and I again finding myself searching for that little glimmer of good this week. How I so desperately wish I could say....Fahris is still doing really well!! She is eating better than ever and slowly gaining back weight and she looks more like herself. Our hospital trips are less and less frequent and everyone is so overjoyed with the progress she is making.
So far from the truth that yes I have tears..a lot of them.
It's Morgan's birthday tomorrow and how hard to believe my "baby" will be 8. She is planning to have a few friends over on Saturday for a sleep over and we will take her out to dinner tomorrow night. We have been very stressed that Fahris is again showing all the signs we so recognize by now. Hoping she feels better by tomorrow or Friday I will have to have her seen again before the weekend. On Monday there were no surprises. Fluid building up again blah blah blah. We are most concerned that a cardiac catheter is in the near future. As I said it will give the doctors exact measurements of the pressures in her heart and chest which ultimately are the reason we are still dealing with this. We are really struggling..while the doctors want the information this test can give Kevin and I are only agreeing to it because we know Fahris can NOT continue like this. It would be so irresponsible of us not to continue this fight to try to make her better. Kevin said the other night that it's not fair to her to not keep trying...I said What of any of this IS FAIR TO HER!
Anyway I am quite sure you can tell what rare form I am in tonight..It's just been a tough few weeks in particular.
Please continue to send us your messages. I know I might not even know half the people reading this but it means a lot just to know you think of us and Fahris and say a prayer.
Love,
Brenda"

It's amazing how close you can become to complete strangers through sharing stories. I am so grateful for her in my life and thank you all for your support.

I can only hope there are more good days ahead,

Victoria

A smile is the shortest distance between two people (Víctor Borge)

Yesterday was so busy I am writing this afternoon to bring you up to speed with the past day because to me it seems as though the past day has been many days in one.

Prayers are being answered. I was able to get in to the hospital and get a new picc line placed in only hours after the 3rd one fell out. So I did not miss any treatment and did not fall behind. Thank you for your prayer.

I was so inwardly focused so inward in thoughts I was overwhelmingly outward with my feelings of abandonment. Where I should not place my trust in man but to a greater spirit and not feel betrayed but to feel a greater lesson is learned. Difficult for me because never in a million years if you had asked me in 2004 would I tell you I planned to be walking with a walker, isolated from friends, at the hospital almost daily, receiving an IV and giving it to myself. No this isn't where I would like to be but yes, this is where I am. It has brought me to the bottom and now and only now can it go up. God has really touched me in some VERY big ways in the last few days and it really is all in his hands. The glory is not for me but for him and in a greater way his glory of using me as his vessel. "Yet, O LORD, thou art our Father; we are the clay, and thou art our potter; we are all the work of thy hand. "- Isaiah 64:8

In the morning we had a book meeting for the illustrations of the book that I am doing. It went well and we came up with some brilliant ideas for the book and I am excited to see what is in store. The girls I am working with are really awesome and very talented so I am excited to have this book published and see the finished piece. It is also nice to see the book coming together piece by piece photo by photo.

Then my mother had a jewelry party at the house and we got the necklace and earring set for my prom dress! I am really excited about prom all of a sudden! I think it will be another fun night and it will be nice to be a teen for the evening no thinking about medical things... Little did I know during that jewelry party I wouldn't only be making decisions on what to wear to prom but about going to a concert... We got a phone call that there were about 3 free tickets left to see the tour Boomin' Beyond Measure with- Jeremy Camp and Toby Mac at the First Arena. First of all I knew nothing of the concert and was a little leery but I thought it would be fun and heck it was free! (kinda ironic the local ambulance that takes me when I end up going in the hospital donated these tickets to a local church.)

Not only would this be my first official concert it was also kind of very last minute and I was contacting people just hours before the concert would be beginning! I didn't know who to call or who to turn to... I decided to text Josiah just kinda like hey I am going no matter what now but if you would like to come I have free tickets for the event and since he introduced me to Jeremy Camp I thought he might enjoy it. It was the last thing on my mind he would say yes. But he did and I ended up going to the concert with him. Josiah is my spot-light person for Saturday... (his bio is below)

The evening ended up being extremely moving to me and impacted me in a way beyond words could ever begin to speak. I was truly moved and inspired by the words of each artist. Through the Season of Silence- a testimony by Matthew West to the short words of Jeremy Camp about hearing stories and receiving letters. Everything seemed to fit so perfectly into my life many of the songs were very moving and one was even emotional to me although I had heard them all before seeing the man on stage was quite an experience. I was amazed. This also put me back into the realm of things I felt like a teen for those few hours and although the medical world didn't completely disappear it was almost gone and I was thankful for that. I felt like a teen and there is no word to describe the happiness and joy I felt in my heart. I felt complete and I felt like God had fulfilled my one and only request these last two nights, if he couldn't heal me could he make me feel a little more normal in my situation?

Josiah Knowles-
Josiah is a kind and compassionate kid. That's the first word that comes to my mind when I think of him. He puts many in front of his own obstacles and is a wonderful image of a Passionate Christian. We have known each other for years and within the last few months have become closer friends and kind of have tried to learn more about each other. He has helped me with my walk with God and helped me be able to put more faith in God when everyone else was asking why God? Last night, he showed his true colors being kind and attentive as any friend should be and being himself. We kind of got to know each other past IM's and it was nice. I don't think Josiah will ever truly know what the feeling of complete isolation feels like and no, I don't really either because at least I have this computer to keep somewhat in touch... Although I was really down and just being with another teen and being able to be out of the house different scenery and a completely different twist than visiting or your typical hang out setting I was overwhelmed with how nice it felt to be a teen to be freed of that feeling of being left out or missing out on life. It's so hard to see your friends call you or your friends lives seem as though they are passing in front of you as yours seems to stop. He truly made me feel like a teen despite my walker and saw past my "disability" making sure my parents came even though we ended up waiting around 20 minutes. He has helped me over many different obstacles and things that I feel it is only appropriate he is acknowledged for his efforts and I am thankful for this friendship and is well deserving of the title an "inspirational person- living an inspirational life."- Even if he did learn about my short term memory loss! :)


Another post will be posted later on today and today's inspirational person. Thank you for your prayers and support throughout this. Something that is not so much a battle but a journey of faith.

Hey look ma, I am not running into our new woodwork!

I have upgraded from the wheelchair to the walker. Although I am such a sight with the walker and my pitiful walking I will not be amusing on lookers with my stylish walker and relying upon the wheelchair in public.

**A quick explanation of my heading- As many of you know we had an addition put on our house just before I got very ill. So we have a beautiful kitchen and all new cupboards and woodwork (wood floors, cabinets, etc.) throughout our house! What a dream for my mother... Then clunk, clunk, clunk you hear me coming through the house from the other end when I am in my wheelchair. I can personally tell it hurts her to see her teen in a wheelchair AND to see her teen side-swiping the new cabinets! So it is of great relief that I am building strength each day.**

I was unable to go to the chiropractor today due to very yucky weather outside and my father was concerned about icy roads since we would have had to leave early in the morning. Which was understandable and due to the fact I was not able to sleep last night very well I was VERY thankful when he said hey, Tori go back to sleep we re-scheduled your appointment.

I busied my day with working on photo shop I am sure it will be my addiction until I have completed the children's book that I have been challenged to illustrate. I am so excited about it yet nervous. I have no idea what I want to do yet 100's of idea's! It should be interesting to see how it turns out.

Tomorrow will be another busy day-

I have a Physical Therapy Appointment in the morning of which I am positive they will whip my butt into shape and tell me how it is. Even though I have yet to meet a horribly mean physical therapist and they actually were my favorite team in the hospital because they gave me hope of getting out of there!

I am also going to get my hair done. A big relief to have my hair washed by my aunt and not my mom. (no offense mom!) My mom just doesn't seem to get all of the soap out of my hair and I can't complain because I am too busy using up all of my strength holding myself in a position so she can wash my hair. It's frustrating being sick, my suggestion: DON'T GET SICK! So I am excited to go get my hair done. (below is a bio on my Aunt Debbie, kinda like Kally's except I don't know her favorite color.)

I got a few uplifting e-mails about this blog. People are happy that I am keeping them updated past my days in a hospital bed. I am happy that people are willing to support me.

http://www.youtube.com/watch?v=vi1uX7PpgXg my inspiration for the day!

I think about it a lot and you know people say what I am going through is horrible but maybe it’s the way God is getting my attention for something later on in life. If we all are willing to be used by him we must be willing to go through whatever it takes to get us ready to do his will. After all his son was nailed to a cross is your faith so strong you would be willing to place it all in his hands? Never look back take a leap of faith and be ready to be 100% used by him. That is my thought today.

This is my return.

**Aunt Debbie- hm. well first off she is a hairdresser, mother, aunt, sister, daughter, grandmother, piano player, some Sundays helps with the worship team, yeah she is pretty awesome. She also has inspired me. She inspires me because she never gives up and keeps on going and keeps focus on God even though she is quiet and doesn't say much her silence speaks a great amount. She is a wonderful woman and she also does my hair and believe me: there is one place you never want to deal with me and that's when I am going to get my hair done. I usually can never get a sentence out with my idea of how I want my hair my idea is constantly changing and then at the end I usually end up in tears over the haircut! So to be able to deal with that alone makes her a saint. She also had 2 knee replacement surgeries and has trouble with her shoulders yet she continues to work, provide for her 3 grand-children, husband, and two sons. She has been a great asset to the Lyme Walk and she constantly reminds me of things that need to be updated and gives me the honest truth when things don't look great. She also sends me some really thought provoking e-mails that can either make me laugh, smile, or cry or sometimes all three. She has really helped me with a lot of things that go unspoken and is a truly amazing woman. Another inspiration in my life. My Aunt Debbie.**

Here's to a good night and pushing forward!

Victoria.

ick to picc's and ticks!

haha I thought the headline was kind of creative?

Last night after blogging... My mom came in and asked me to stand for her... I was a little nervous so I said yes and reluctantly I am happy to announce:

I took like three steps!! Although they were a little shakey they were steps! So this is most definitely improvement and I am sure you all will be overjoyed to hear about that. :)

Today, after praying and wondering and trying to think if I might ever get to go to church... I went! I got out of bed got some clothes on looked like my sickly little self and went to church. Those of you who don't know me, don't know that church is probably my biggest driving force. Without my church I don't think I would be nearly as happy and as strong spirited as I am... I have been brought in touch with so many incredible families from that church! Ah, at last I must say God works in wonderous ways that I really don't think I will ever see coming until bonk. They hit me in the forehead... As long as he doesn't leave bruises like the IV team does at the hospital we're cool! :)

After church and talking to everyone and surprising everyone with my guest appearance! :) (One thing about our church is the immense support you receive the moment you walk in the door. Smiling faces tight hugs, and LOVE!) So this is why I love going there and last night I asked many friends to pray that if it was God's will... I would be able to go to church and I was able to get myself there and it was the best feeling in the world to be there!

Well I decided since my OCD is acting up and I really am itching to get a tackle on the medical files that I would like to risk everything and go to wal mart while we were out and go get filing stuff and get some planting stuff. One thing I want to do is to show life is going on in the world... Have something growing! So I want to start an indoor plant garden with veggies so..... After reading lots about plant gardening in pots while I was in the hospital my mom bought me a mix of crazy stuff to start my indoor garden. I am absolutely psyched! We also ran into a long time friends father. And I might be able to go hang out with Kally (read Kally's story at the end of post) a few hours every so often! Which made me extremely happy and would be very exciting because it's something I am confident about doing even with my condition and I have a deep love for Kally. So it was really a great thing to run into him and hear a little update!

Now, usually when I ask for prayer I just say thank you for prayer. Thank you for your thoughts continue to pray for my health! Today, I am a little more specific with my request: My picc line (which we are continuing to feel is very important to my road to recovery) looks as though I may have another yeast infection in it! Which if you do not know much about picc lines can be very dangerous if not taken care of. My skin is draining out onto my shirt and the site is warm to the touch... Since we just noticed it worsening today, we will probably wait til tomorrow and head to the IV team at the hospital tomorrow morning to have them take a peak and see if there is any hope in saving the picc. Which I hope there is! Since of course getting an IV alone is no fun but having an IV strung from your upper arm to your chest is a little more intense and is something I have already done three times! My skin is just so sensitive we don't really know what is going on. Hopefully it's a topical thing that can be taken care of.

Right now our family is overwhelmed with support of others and financial difficulties of many sorts. We are willing to try anything if it means getting me better but... We cannot afford me to stay on IV forever as some think if it works I should! So there are still many things to face and many hurdles to overcome but things will get better at the slow steady pace as we continue to look forward.

Tomorrow I am also heading to a new doctor so prayers there are helpful but I am confident he is a good doctor and he is going to help us with herbal remedies and such so as I have mentioned him before I think he is another step in the right direction.

Okay, so music is big with me right now. If you suggest anything I will give it a listen. My new song of interest is Anna Nalick's Shine. I probably will have a new song daily because I am really getting motivated by the music aspect of life.

Kally-
Kally is probably one of the most inspirational people in my life. Yes, I have a few that I would say that about. She is 18 years-old and lives with down syndrome. She is a great girl and can add a smile to any one's face. She has helped me notice the simplest things in life and shown me that even the most complex situations can be healed with a hug and a smile. She strives for success and knows her desires! She can be quite a handful but, after meeting her in the 3rd grade and keeping in touch all of these years I consider her to be a friend and not so much a person to baby-sit. Although sometimes I can forget she does not understand and frustration overwhelms me. I still am able to pull through and she will be my forever coloring, and Disney movie watching buddy. As the world grows around her Kally continues to stay interested in the simple things and if at all I an only wish to keep a little of Kally in me- and notice the simple things! (her section is pink in honor of pink being her favorite color! :))