2008 in photos

2008 brought many things both new, old and otherwise- here is a photo for every month for the year of 2008. I am sad to see it go but ready for all of the new beginnings that are yet to unfold. Happy New Year! May this New Year bring all of you a new beginning and health and happiness to you and your loved ones.

I have complete faith this holiday season.

As I was reading Kelsey's blog or K's blog I realized I am putting my 100% faith in God this holiday season and as I apply to college this year. If I don't get into my colleges I plan on getting into then that's not what I am meant to do. Not yet. My calling is here close to home with the support of friends and family and I will be going to CCC with some other kids from school. I was watching this movie and listening to the lyrics it really hit me. The song is "Rescued Nation" by Holyfire.

I would like to spot-light a very special person close to my heart today.

Lucy, She is a fellow "Lymie" and I have really loved our friendship. I am amazed by her strength and courage. Even though we go through rough patches I know she will continue to be herself. She is true she isn't afraid of showing her reality and her soul. I am so amazed by her and there is just something about her spirit that amazes me. I haven't talked to her as much lately but my amazement and prayers have not changed. She is such an awesome young lady. I am so thankful that I have people like her in my life to say hey, it's not so bad or keep on fighting you dork you're not going to get better by complaining! She isn't that harsh promise. But she is always encouraging me to go against the grain and try new things or say enough is enough. She is bold and beautiful. She shares a passion of painting with me and I am lucky to own one of her originals. She is an awesome girl and has an amazing spirit. Thank you for being my friend Lucy. You absolutely rock.

P.S. I am trying something new out today- I scheduled this blog to post tomorrow! :) How cool.

Giving it all to you.

So I went back to school today first time back in about 3 weeks or so. It was really nice to be back to school. I love going back and seeing people I love them in all their germs and glory even if it does mean working and losing more strength and energy than the other kids I attend school with. Even if they can't relate I just love going to school... It is the biggest challenge and the greatest reward it makes me tired and weary and it makes me feel rusty and old but it's the greatest thing seeing people seeing happiness seeing struggle. Seeing other people my age. I wouldn't change my day at school even if it does leave me worn out. God gives me a body to use not to preserve. Tonight I just am really happy to be here and I wanted to just write about something that laid heavy on my heart tonight.

Don't take the time you have here for granted, don't take the relationships you have here for your personal use. For before too long the days that were seeming so long will quickly slip between your finger tips. Yeah, hours will turn to minutes days to hours and before you know it your life will be quickly fading away. I don't know what to say other than I am so glad that you're here now and today. I am so thankful for so many people and for the next while I am going to be spot-lighting again.

Tonight my Spot- light is on my dad.

My dad is a guy of few words, or many and he can really make me think. Sometimes I don't really get what he's saying and sometimes he gets me really confused. But one thing I know for sure, is that he loves me. It might be confusing at times but I know that he has been there at the hospital when I have had to go in he has been there listening to my cries call out and I know he will be there any day I am on unconscious. My dad is a person I look up to- he lost his father at about this age and I cannot even imagine the pain or suffering that causes. I can guess or try to think of it but I will never really know. He showed strength he emptied bed pans and helped out around the house he was the youngest he was strong willed. I think he holds a lot of his mother within his heart. He is good to others, he shows compassion to others, and he has a strong spirit. My grandmother is one of my biggest role models today. I am so glad I practically lived at her house growing up and I am so thankful my parents blessed me with that time with her. I remember distinctly a night, my dad asked me if I wanted to go to the babysitters or his mothers the next day- knowing I would get to see other kids my age I said the babysitters and I remember him getting mad at me. I didn't understand why he was mad but now, looking back upon it I know something I didn't know then. Time is limited time is not bought and time is not a gift, our days here are numbered and I should handle them as though they are something wonderful because that it truly is. The days I spent wasting away hours I wish I could have learned more from people like her. It just reminds me there is so much still yet to learn especially from my elders. I can't thank my dad enough for being at my bedside for holding my hand for giving me a stern word or two and showing his way through. I am really glad my dad is my dad and I wouldn't trade him for the world. He has instilled a taste of music within me and he has shown me that with a little courage I can do absolutely anything. He will put his job on the line to be with his family and he has surrendered all he has. I guess, sometimes we're blind to these things but he taught me one thing for sure I know that the all mighty dollar does not come over relationship. Never will and never should. I am so very blessed with the people in my life especially my dad. He is a wonderful man he really is. So dad, here's to you, thanks. You're really great and all the nice comments you read on here, yeah dad that's to you too because you raised me with a stern tone and a pat on the back. I am so every thankful for you dad.

Giving Back

This Christmas I have strongly focused on giving back to people. Every day for advent I am doing something special for someone in my community. I decided that the Christmas holiday is a very important holiday to feel loved, to know that people care. I know that may sound corny but some people feel like no one does care and I think we all go through those days.

This holiday season, if you don't have a charity to give to or are looking for a way to give back- I would like to encourage you to buy a Lyme disease afflicted teen a gift. If you're new to my blog, I want you to know that I don't ask for money constantly and I don't push too much charity stuff for Lyme. But as I have seen some of my friends that are sick with this horrible disease it has strongly broken my heart. I am giving to a lot of different other sick kids this year in hopes to reach out and I encourage you to do the same. Below are bio's of the kids involved. Click here if you would like to get involved in this. I am really hoping I can see the kindness of healthy strangers pull through.

We kept all the wishes under $20 and the only real request I have is that you write a Christmas card out to them with a message. If you think about it, 4 people put in $5 you have enough money and it's only $5 and then if all of those people give a card it's like a shower of cards. You really don't know how much that means to someone who has been sick and rarely gets mail. It really is the thought that counts. Please e-mail me if you would like to buy a gift because I am leaving the wish lists up until Christmas Eve. to keep it a surprise I am not taking down the items that have been granted. However I am not going to keep rambling if you would like more information please e-mail me. If you cannot give this year, I request prayer for all of these wonderful teens who are suffering greatly and all of them are not able to go to school on a regular basis, so I ask for prayer the greatest gift of all.

Each link on the person's name takes you to their wish list.

Alex H.- Alex has been sick since she was 11 years old. She was always healthy. She began having weakness in her left arm and within 9 months she walked her last steps. The weakness traveled from her left arm/left leg/right arm/right leg and then respiratory. In 2 more months she went into respiratory distress and Dr's said she would not survive the night. Alex was airlifted and put on a vent/trach and a g-tube inserted for nutrition. Today, Alex is completely paralyzed unable to move, breathe, eat or talk. However, she understands everything and can slightly move the corner of her mouth to yes questions. She believes someone is going to help figure this out and help her be well again. Alex has an identical twin, Jaci who is healthy. Alex is the only one who has no diagnosis.

Candice M.- I'm Candice, I'm 19, and I've been battling lyme for about 3 years now. I was only diagnosed 7 months ago, so for the first couple of years of my illness I just tried to push through. I went off to college last year, and that's when my body started to push back. I became so ill that I had to drop out and move back home in the middle of the year, and I've been at home struggling ever since. Hopefully the holiday season won't be so bad. I wish all of the lymies out there a happy and healthy holiday (or at least a stable one, that's just what I wish for!). Merry Christmas!

Jeff K.- My name is Jeff. I'm 16, and have had Lyme for 3 1/2 years. After relentless treatment, more needles than any hospital can carry, and unbearable stress and problems, my symptoms have barely let up. I love my parents so much, they've spent nearly their entire fortune just to get me better. Unfortunately that will not last forever.I have severe fatigue, so I can't really do much besides lay around. I listen to a lot of music and play a lot of games...and that's pretty much it.

Kayla P.- I'm Kayla and I just turned 19. I have had Lyme for 5 years now. I love to read, do anything artsy and crafty like beading and drawing, watching movies and listening to music.

Lucy M.- Hi everyone : ] I'm Lucy, I'm 18 years old and have had Lyme for 11 years. One of my favorite things to do is paint.

Makayla B.- Hi, I'm Makayla and I am 18. We believe that I have had Lyme since birth, so I have been battling this disease for a while. But I continue to fight, and am determined to beat this disease!

Sami S.- Hi :) I'm Sami.. I'm seventeen years old.. I've had Lyme disease for the past three years.. I used to play volleyball and basketball before I got sick but now I can't.. I like to spend time with my little dog Lynny and my boyfriend that I've been with for over two years.

Victoria W.- This is my wish list, I am also the creator of this group. I have had Lyme since Summer of 2005. Right now I am home a lot and I have been pretty sick with my stomach and everything else. I have a seizure disorder and nerve problems as well as brain cognitive problems... You can find my full story at http://vicupdates.blogspot.com/ If you have any questions please e-mail me at victoriawilcox7@yahoo.com. This group really isn't about me but about all of the other colorful people who deserve a wonderful holiday season!

A Quilt as a Map for my life

I have had so many different experiences that, well I can't really explain in words. I am left awestruck and amazed, in disbelief of how my life has turned out. Sometimes I feel like a wreck and I am scrambling around to pick up the pieces- other days, well- I am just letting the day pass me by, finding what I can and working at what is given.

I guess my eyes have been opened and things are clearer, God is moving in my life in huge ways… I can’t explain it but I know he’s there. It started with a dream about a quilt. It was a powerful dream with vibrant color- the quilt was beautiful and the person who gave it to me was full of energy and excitement. I didn’t see who they were and the gift brought me to tears in my dream. From that night I picked apart the dream and thought about what it could possibly mean. I finally came up with an idea but then that got pushed to sea. I felt even more alone and pushed away that night. Nothing seemed as though it could bring me joy. I was so upset. I didn’t even know what to think- I spent the evening crying and trying to figure out what I should do how to change things what to leave the same. I just really didn’t know. I felt as though my life was on a fast roller coaster and things were completely overwhelming.

The next day after skipping the church service, I arrived to give some people a ride to a service project that I was half dragged into because I felt obliged to do it. So I went and once I arrived at church my youth pastor saw me and he was so happy to see me, he said he had something for me. He said it with such enthusiasm and well, after waiting for months for DVD’s from camp and the retreat I was certain that was what the gift would be. I was kind of proud of him; he finally was getting it done. I was extremely surprised when I followed him into his office to see a bag with a green and orange pattern. My first thought was oh jeez this is some sort of a joke, a clown costume. My mind I noticed was snapping to thoughts as quick as a wink jumping to conclusions. He then pulled out a quilt that he said had been made for me. I was surprised to say the least, speechless. I didn’t feel I was “eligible” for something like this from the shawl ministry because I had received a shawl but- this wasn’t a shawl at all. This was a quilt, I felt honored, humbled, and I was in shock. Who could have made this quilt? Just the night before I was bemused over a quilt and I was feeling selfish and now this one was just set before me. It had been prayed over and it was a gift; I don’t really know who made it, or where it came from, but now this quilt has become one of the biggest gifts I have ever gotten.

That night the quilt offered me just the right amount of heat on a chilly evening and now these days that follow it comes with me all around the house it is my security, it is my tissue for tears, it is now mapping events in my life. I decided with this quilt I wanted to put names on it- to add stories to it and for each square to symbolize what is going on now, and what goes on in the future. So now I am beginning my adventures with this quilt two names have been placed on photos of squares two lives that changed me and as time passes this quilt will have its’ own special scrapbook and a special place in my heart. I don’t know who did this but it has been an act of kindness that has not gone un-noticed. I am so very grateful and I am amazed by their generosity. I am just awestruck by the love of strangers.

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.

Praise and Holding Strong

I wanted to post an update on here, I am still not feeling well- my strength is not there and my stomach is bothering me a lot it hurts and it feels full with just a little bit of food. I guess all I can say is the stomach pain nausea and everything else is just in time for the biggest eating holiday of the year. So my frustration levels are quite high. I went to my Primary Care Physician on Tuesday and he sent a request to the surgeon to do a scope of my stomach. He is supposed to be pretty good and you're not supposed to remember any of it which is kind of how I want it. Even though I am a little nervous about everything, okay well- a lot nervous. We finally called that doctor to ask why he hadn't called us about the scope yet, and come to find out he is uneasy about doing a scope on someone under 18. My birthday is in February, darn it. Seems these doctors always want me to be a year older. I hope that comes to an end because I really hate growing up.

I also wanted to post how thankful I have been for such wonderful people in my life. I know I give them credit a lot but as I was reading over new and old comments I was amazed. A lady from India reading my blog?! The kindness of absolute strangers, Kimber posting a post about prayer for me on her blog, I just can't thank you all enough for your little posts of encouragement and your love that you have sent me. I think these words and these nudges of love quite possibly could make my Christmas absolutely perfect. I am just so thankful for the kindness of people in general because there are a lot of scrooges out there.

I don't know about Christmas for you, but as I was thinking there are so many friends of mine with Lyme that have been sick for so long Christmas almost just seems like another day. I can't think of anything I would like more than for these sick kids than a wonderful Christmas. They said I had to put my name on there too, so I have one thing- I don't really think I want anything really for Christmas- just the happiness and peace of the holiday. If you would like to be a part of it and would like to buy a Lyme teen a gift please e-mail me at victoriawilcox7@yahoo.com their wish lists are at www.kaboodle.com/lymiewishes. When you e-mail me with who you're buying for I will remove that wish from their wish list and I will also e-mail you back with their mailing address so you can ship the gift to them. Please wait to buy the gift until I have wrote back to you though to avoid double gifting- right now, we don't have everyone up but hopefully soon.

Have a wonderful holiday and now, I will continue with my days of thanks.

Sing, Sing, Sing!

I am feeling a little better today still not myself really, I don't understand what is going on lately but I feel happy about some things like my friends. I am really blessed to have such wonderful and compassionate friends. Although sometimes my "normal" friends seem to have a hard time understanding how to be compassionate they have all been so good to me. I am really thankful that I have a decent support system through my church especially without the people from my church I don't feel like I would be able to keep much faith in God. They have encouraged me in days when I had doubt and I have really began to seek faith for myself now.

I would just like to spot-light a blogger today:
Kimber it's rare that people actually show themselves while reading my blog, people I don't know anyways. Really, this is for my family so anyone else who finds encouragement by this is just a lucky person I guess. But she has put me on her blog-roll and I have felt honored I began reading her blog and she is quite an avid blogger, she puts me to shame that's for sure. But she has a kind heart and she has really just made me realize that my blog may be one in a million out there but it's out there and impacting people. She's a wonderful mother, and I think her son would agree! Thanks Kimber.

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.

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.

Sometimes silence is the best one can offer.
Please pray for the Wyand family in the loss of their youngest daughter Fahris. I met this courageous family almost a year ago to this date. Their daughter has impacted many and her legacy will live on in the memories of many. She was a wonderful little girl and today all I can bring to you is silence.

Hit in the head and re-thinking life.

These last two weeks have been amazing to say the least.

I got to see normalcy at it's highest point the week before last and experienced a normal vacation with my family filled with kayaking, hiking, swimming a 1/2 mile to elephant rock- with a life jacket on and someone swimming beside me... But getting it done was just amazing since I had wanted to do it since I was a little kid. 

Although it was a little upsetting when the vacation turned sour Thursday night starting with a very bad headache and losing all of my motor skills and ultimately having seizure like activity and ending up walking with a cane again. Although that did not spoil the vacation and it was truly a great week with wonderful weather.

Then after consulting with my doctor he said I could go to camp for the next week and it was for sure something that turned around how I think and changed me forever. I feel even though I missed the last night due to three seizures and extreme fatigue- the week over-all was absolutely amazing. 

Not a thought goes through my mind that doesn't get thought again in another retrospect I have learned so much about my faith and everything that goes in it. If you get a chance something that really hit me was the Reach 4 Life program that was brought up in the sermon multiple times... Micah a guy who works with teens in Zambia, Africa was able to bring us with stories and connections to these kids across the world from us I was able to purchase a t-shirt and support this ministry by giving a kid a bible. I am amazed by the lack of awareness in so many areas of the medical field. This video is the video they were showing at the booth they had set up and I encourage you all to watch it and if you can invest in this and support the program $10 will purchase a bible for a teenager who is in school and going through the reach 4 life program. Giving them a message on purity based on the New Testament. 

http://www.youtube.com/watch?v=dHo1OpOZt_g

Another group that I met was the Tommee Profitt band they were there for Junior High but I got the chance to 

meet this group of men. The three guys were an encouragement to me and showed me a lot through their compassion and kindness. I was really blessed to meet them and after ending up in the hospital with 3 seizures episodes I was able to pray with them and see their love of God really pour out. Their outgoing spirits and

the will they had to go past their music to really reach out to teens was awesome.

So all I can say is I am blessed with the opportunities I have been given. I continue to pray that soon this broken road will be over and I am so thankful for all of the love and support poured out during this last week at camp.

- Victoria

Spot-Light Person:

Now if you're just tuning in due to the fact that you got a bracelet at NTS camp- I would like to say I spot-light one person each day I 

post.

Tonight I would like to spot-light Jimi of the Tommee Profitt Band

Jimi was the first guy I met with the band and his kindness really 

showed through everything. He went out of his way to get a t-shirt 

for one of our councilors and was able to be part of my prayer with me my last day. His light of God really shows and the way he 

displayed his life was amazing and really life changing towards

me. I am really glad I got to meet him and hope that some day I can display the self-less compassion as well as I saw displayed towards me.

Perspective.

If you always view your body in normalcy you'll never notice the flaws.

Today as I slowly pick apart my past and read journal entry after journal entry through joy and sorrow I feel the emotions of each moment flash before my eyes. Each time flash before me thinking feeling what was there. I was frustrated a lot of the time but found normalcy in my state of being. I found what wasn't normal to be okay and ventured on into life. It was how I coped through the hard times and the not so hard times. It was how I dealt with life as it was handed to me.

Now people ask me my perspective as I have badgered many friends over and over for their perspective. Receiving interesting, heart wrenching stories of how they dealt with what was happening to me and how they deal with what goes on in their own lives.

So now after months of pushing these thoughts over I have decided to give my perspective. A dry thought on life in my body.

In my life as I go through a day to day basis I try to connect with the things going on around me.
I think this helps everything seem normal especially with music.

I think what I can relate most with right now. Is the song Superman by Five for Fighting.

"It is not easy to be me."

Although I don't find it all to relate to every single thing that goes on in my life or how it unfolds but I do believe a majority of my life is based upon finding relations between things. I glue together lives and pieces of a puzzle so I can see a greater picture. When I see the greater picture I find security and strength in what I do. So my perspective is that life will never be easy there will always be a thorn in the road even if your path has just smoothed out but-

none the less you live for yourself and those who love you- you do not live for moments in time.

I would like to spot-light a special little girl today who has tried her hardest to be a big girl.

Her name? Danica Lynch:
As I am the youngest in my family, youngest child youngest granddaughter and always forced to "grow up". Now with this disease I was forced to reach out of my comfort zone and grow up a little more. Danica has been helping with the Lyme walk stuff and even helped sort the many t-shirts that were ordered! Her helping heart is amazing and she's an awesome kid. She always has something to say but tries her best to be on her best behavior even though it's difficult to ask a younger child to sit still while everyone talks. So I would like to spot-light Danica and say her efforts of being a big kid have not gone unnoticed.

Painting Hope

Taking your brand new paint brush and dipping it in the first color
The first few strokes are hardened and pointy.
As if the paintbrush itself is unsure of it's duty...

The paintbrush a lot like us when we reach unsteady ground.
Not sure of what to do unsure of how to do it or what we're going to reach out to next.
We are like a new paint brush when we reach unfamiliar land testing the waters out with our toes before we're into it up to our nose.

Slowly the brush warms up and soon you're working with a limber brush and creating the background to your scene.
I start with the top knowing just how I want the sky to be...
Slowly working downward until the whole piece of wood was covered with color.

Slowly but surely I make my way to the outline of hope.

A little ducks black outline covering the blues and bright colors...
Filling in the dark areas with a little red duck and red feathers too...
Stroking through his beak and feet I make them as yellow as can be soon he looks as though he will say quack quack and waddle his way right off the piece I have made.

I create this duck and then soon give him away for what is artwork with out being shared?
This image of hope is here to stay symbolically representing our everyday.

Each day I don't feel good there has to be an ounce of hope-
For we push on to tomorrow with that little hope.

Quack Quack says the duck as he walks away.
I am hope for you and I am keeping you here today.

*Hope is a duck that I painted for Fahris while I was in the hospital and met her I gave Fahris that duck with a little poem and to my understanding hope is oh Fahris' wall and I think it's well understood that hope is also held deep within her heart.*

Spot-light:
Brenda- I spot-light Fahris' mom today as I forgot to yesterday. I want to say she has been a wonderful mother to her small half pint child who has battled the world with her right hand. She has shown courage when no courage could be found and has extended her right hand to know what's best for her daughter. She keeps everyone updated through her caringbridge site and knows that everything will be alright. No matter what the doctors have said she has continued to keep hope and I was so blessed to meet this family that gave me hope. I could only return the favor they gave to me with giving them a little hope of their own.

Kevin- I also feel it's important to spot-light Kevin Fahris' father he was the first person to visit my room. He came a little later with his daughter that he so proudly was able to show off. He told me a little about Fahris and about the long stay they had endured. Later the whole family was in my room and I was quite amazed at how much I had learned. They were an encouraging bunch and hat's off to Kevin for his courage to stand beside his wife and child through many sleepless nights and the beeping of the machines. It's quite amazing to see the love a parent can give to a child experiencing it on my own and knowing how much it means to have mom and dad there... I am sure their actions will never be forgotten in the little mind of their daughter.

A peak into my space

Each day is like a fast paced roller coaster for me and I don't know how else to explain it. I have extreme high's where I am able to get out go for walks and help around the house. Then I reach extreme lows at the drop of a pin where I am extremely exhausted can barely move and feel like I have been beat up.

Lately my lungs have been weak and things are a little more difficult. Although I am finding great praise in the things that I have done and the things I continue to do I am slowing down a little and noticing some not so exciting things. Mono has been mentioned along with some other things that I could possibly have. We're searching for what could be going on with the help of my doctor. Tests will be ran in the upcoming week.

A surprise for this upcoming week!

I ask for prayer for the Wood Family as they experience the recent and sudden loss of Mr. Wood- the father to a good friend of mine.

Spot-light:
My faithful friends- behind this blog there are so many people that support me as you notice at the end of each blog entry there are multiple people or one person at least that are placed in the spot light. Tonight I asked if someone could run chat for our Lyme support chat and it was very easy to find a person who was willing to take my spot. Through the support and prayers of them I am certain I can beat any germ that has entered my body and continue to thank all those who stand behind me.

Victoria

Years passing by in the blink of an eye.

Today was the last full day of school for the high school in my area.
I now am officially a senior or so that's what I say when I fill out the camp application for camp this summer or when people ask me what grade I am going to be in.
My heart and nerves are extremely anxious.
Tonight as I sat back and thought-
I realized some of the most amazing people I have met in my life will be going off to college this upcoming fall. I have never felt so inadequate or speechless. For so long you know the day of graduation is coming up and seeing so many split paths...

Each person has impacted my life in so many ways and to think that soon a class of my own will be walking up the steps and going to graduation in just the weeks ahead.

I would like to spot-light some seniors who have especially touched my life knowing that each of them will be successful in whatever their passion may be:

Abbie Surosky:
Abbie oh my! Well I guess this year and the past few have been binding years... After so long of distance and not talking I never would've guessed that you would be extremely good friends by the time you graduated. From playing in the dirt pile while we were young to a wonderful girl that you are today. You have been there for me through thick and thin and even found time to bring me pizza and visit me multiple times while I was so sick and even when I was miles away in the hospital.

Chris Zukas:
Chris has been a very good friend who has shown me that throughout any obstacle life places in front of you. He has been strong when I have been weak and has been able to keep me smiling when it was difficult to do so. He has been a really good friend to me and I am really impressed in how he far he has come.

Jake Boylan:
From around 5th grade walking home from school to today you have grown into a wonderful person. With everything from your Eagle Scout ceremony to the upcoming Graduation Ceremony I am so proud of you and impressed by your compassion and patience through everything.

Jake Castiglia:
I wouldn't have met you if it hadn't been for Marissa but you have been another blessing! I am really impressed by your strength and courage going into college. You have expressed knowledge and perseverance in a very trying education of becoming a doctor. Although our conversations have been few and far between they have been heartfelt and quite interesting.

Joey Kuehner:
Joey met me very late in the school year after I had shared my testimony at church. He was one of the first friends I made when I started going back to youth group. He has helped me grow immensely through Christ and my faith. I am really impressed with his maturity and how much he has been able to show me through his guidance and faith in God.

Josiah Knowles:
Josiah and I started talking awhile back and he helped me grow increasingly in my faith. He has encouraged me through prayer and reference to Christian music. He opened doors through the music that he encouraged me to step out on a limb. He has been a great source of encouragement and I am so glad that he was the first person who I really connected with from our youth group at church.

Kelly Palmer:
Kelly has been a good friend through this year catching me when I fell and helping pick up broken pieces. She has been a good friend and showed me a great amount of compassion during the marching band months spending a lot of time with me and sitting with me after competitions. She has shown me what it's like to be selfless and the love of friendship and is probably one of my musical friends with references to songs and she really showed me that where ever I wished I could make a difference.

Lacy Rugaber:
Lacy is another awesome person she helped me with the walk and getting everything sorted out. She has added humor and a lot of reinforcement to our team with the walk and I have been very impressed with her as a person. I can't believe how many teens stepped out to help with the walk.

Lucy Mooney:
Lucy is my Lymie sister for sure. She has taught me that through the disease I can overcome anything that I need to. She has gotten over this disease and she has been a massive amount of support where no one else could be since she had experienced a lot of the things that I have wen through. She continues to give me support every day if it's through my writing or my paintings that I do she has shown me that the true person is not what is on the outside but what is within. She is most definitely a remarkable person.

Marissa Angell:
Marissa has helped me with all of the girl things that are needed in life. From painting nails to encouragement to hospital visits she has been there. She is an incredible worker and works with her heart for everything she achieves. I am so blessed to have her on my side and incredibly grateful to be friends with her.

All of these awesome people will be going out in the world come late August/ early September and if I could ask that you each pray for them as they enter the world making names for themselves.

I can't express how grateful I am for having such awesome friends and people who have entered my life.

A true update on my health coming soon!

Victoria

Fahris

Being born into the world with perfection in mind
ten tiny fingers and ten tiny toes
wiggling about in the arms of the fast pace of doctors grasping her slippery body
Perfection in mind for a mother with love in her eyes.
Whatever could be the matter could wait just a moment
A glimpse into the future would only hold uncertainty.

Now a spunky little girl with a smile on her face
holding tricks up her sleeve
She's a miracle some say,
She's out of the ordinary to others.

In the end she's just a 4 year old with ambition and passion for what she wants.
She gives hope and peace to all and brightens a room with the smile she allows upon her face.
She's Fahris.

I ask each of you to add a prayer for Fahris today: she isn't done with her battle with a heart condition that has left her sitting on the side lines. Please lift this little girl up in prayer and ask that soon she'll be free of oxygen and tubes and all the pokes in the world and she'll be able to join the other children on her own personal playground.

Coming at you with one more thing!

Negativity can bring the spirits of one down but positive actions can create well being in all. If you have a disbelief in someone else and feel what they are doing is something that is a hoax or something that isn't real. Then do not give them any attention back for even negative attention is attention.

Now throughout blogging this and opening my personal being to others I take risk for others to add their own personal opinions to the open and leave ever lasting marks. Now I could take these comments and leave them up but I choose not to and choose to see the 200 other comments that are positive and heartfelt.

So if in your heart you think this is a ridiculous story or doesn't make sense I ask you now to take your mouse and go to the top right hand corner of this page and close this window and never return. That is all I ask of you.

For those of you who continue to come and support me through the hard spots and the smooth roads I ask you to pray for "truther" and the others who have not had the audacity to put a real name in the name spot. I cannot say anything more about these people but I do know that we as Christians have two choices we can make unlawful decisions and refuse to understand or we can try to dig a little deeper and understand things from a different point of view. It's difficult to say what is to be- and maybe these people are Christian but we need to lift them up in prayer for they weaken the hearts of those who have read their writing.

Please take a moment and read this theory that was made by another young woman and I take it with great insight that she wrote this for it is very truthful and brings light on to what it's like to be a teen with an invisible illness.

Victoria.

The Spoon Theory

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.

As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?

I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn't seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.

I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.

She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of "spoons". But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn't even started yet. I’ve wanted more "spoons" for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said " No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can't take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too." I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her a spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s "spoons", but just think how hard tomorrow will be with less "spoons". I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on "spoons", because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.

I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared”Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day's plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count "spoons".

After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can't go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my "spoons".

© 2003 by Christine Miserandino
www.butyoudontlooksick.com

Amazed.

Sarah and I at the prom.

Well just a few days until the walk! What an exciting thing to be a part of!

I was thinking for a short while this morning about how lucky we are to be able to at least advocate and create awareness for things that are not known relatively well across the country. So even though it has taken a lot of work and determination and standing up for what we want to do Sarah and I are both excited to bring you the inaugural Lyme Walk- for those who can't.

It seems like it was just a few days ago when we were at the Relay for Life joking about a Lyme Walk. We were all trying to come up with what you would call a Lyme Walk funny how simple our title became and how everything worked out. A joke became a little more serious with the creation of the Lyme Walk website (http://www.lymewalk.org/) and then later the purchase of the domain name. We realized that this joke was a reality and we were actually going to pull something off! Throughout the summer months we started getting things ready and ultimately got our first newspaper article published about us in September. We were excited to see where the walk could be headed and thrilled to have a large committee of people on our side. Now through the support of our local schools, and peers we're bringing a dream to reality. What seemed impossible has been possible!

I cannot promise any posting for the next few days because of the Lyme Walk and friends and family coming in from out of town for the walk! So hopefully the weather will cooperate and the day will be full of learning and fun!

Hope to see you out at the walk Saturday!

Spot-light:

Sarah:
Well Sarah is another one of the people I am very blessed to have on my side. She has been working diligently to make this day possible. She has helped with everything from Volunteers to each meeting we have had. She helps with so much and has really been amazing and working hard for the walk. I am so thankful to have her working with me. She was not only there to encourage me throughout hospital stays this winter but she was there to send out e-mail's to inform others, update my blog, and do all of the behind the scenes work that it took while I was away. Expecting no thanks but only hoping she would have a healthy friend through all of this work. I want to make sure her position is not a thankless position and I am so glad that I have some very awesome friends that have been to more than just a few meetings and have come to support us- as we pull this walk together. It has been absolutely insane to see come together and this Saturday will most definitely be the biggest gift of all. So thank you Sarah!

Prayer Request

If you could take a moment out of your day to say a prayer for the two below matters:

My Uncle had a heart attack the night before last and he's finishing up today the first 48 hours after he had a stint placed in the front of his heart. The first 48 hours being the most crucial after a surgery like the one above- so he has been in ICU for the last 24 hours and prognosis of going home is yet to be determined.

I also ask for prayer due to the fact that I have been getting sick. I have had more problems with my lungs and difficulty breathing which is not good considering the walk is this weekend! So hopefully I will gain some strength by this weekend and won't be as tired and weak by the upcoming events this week.

Spot-Light:

My Aunt Mary- for she has been another strong and willing person to work with our family during the days ahead and the past times while I was sick. Yesterday she took me to the hospital to get my chest x-ray and she has went with us hours away to doctors appointments and stayed with my family while I was in the hospital miles away. From dog sitting for us to traveling and helping us with getting prescriptions filled or taking me to get blood work done. My Aunt Mary has been a saint for us and continues to help my family and I as we go through this difficult road. She is one who does everything asking for little to no credit and continues to work at everything with a heartless attitude.