Monday, June 30, 2008


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.

Wednesday, June 25, 2008

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.*

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.

Tuesday, June 24, 2008

Enjoying today

As I was going through today and yesterday with whatever was on my mind... The last few days have been a little rocky for reasons not really known to me.

I received this e-mail and it made me think and it has been quite thought provoking for me... It changed the way I think about life and I think it will change how you think too...

Two men, both seriously ill, occupied the same hospital room.

One man was allowed to sit up in his bed for an hour each afternoon to help drain the fluid from his lungs. His bed was next to the room's only window.

The other man had to spend all his time flat on his back.

The men talked for hours on end.

They spoke of their wives and families, their homes, their jobs, their involvement in the military service, where they had been on vacation.

Every afternoon, when the man in the bed by the window could sit up, he would pass the time by describing to his roommate all the things he could see outside the window.

The man in the other bed began to live for those one hour periods where his world would be broadened and enlivened by all the activity and color of the world outside.

The window overlooked a park with a lovely lake. Ducks and swans played on the water while children sailed their model boats. Young lovers walked arm in arm amidst flowers of every color and a fine view of the city skyline could be seen in the distance.

As the man by the window described all this in exquisite details, the man on the other side of the room would close his eyes and imagine this picturesque scene.

One warm afternoon, the man by the window described a parade passing by.

Although the other man could not hear the band, he could see it in his mind s eye as the gentleman by the window portrayed it with descriptive words.

Days, weeks and months passed.

One morning, the day nurse arrived to bring water for their baths only to find the lifeless body of the man by the window, who had died peacefully in his sleep.

She was saddened and called the hospital attendants to take the body away... As soon as it seemed appropriate, the other man asked if he could be moved next to the window. The nurse was happy to make the switch, and after making sure he was comfortable, she left him alone.

Slowly, painfully, he propped himself up on one elbow to take his first look at the real world outside.

He strained to slowly turn to look out the window beside the bed.

It faced a blank wall.

The man asked the nurse what could have compelled his deceased roommate who had described such wonderful things outside this window.

The nurse responded that the man was blind and could not even see the wall.

She said, 'Perhaps he just wanted to encourage you.'

Epilogue: There is tremendous happiness in making others happy, despite our own situations.Shared grief is half the sorrow, but happiness when shared, is doubled.If you want to feel rich, just count all the things you have that money can't buy.'Today is a gift, that is why it is called The Present.'

As friends of one another we're placed in each others lives to be the blind man and give what we have to encourage one another. So I hope to all of my friends that read this on a daily basis that I have been able to be your blind man once in awhile, encouraging you and making things a little better.

Have a wonderful day,


Sunday, June 22, 2008

Long Week!

This week has been a long week for sure. With so much happening and little time to reflect it has been difficult on me. I have been extremely tired and trying to get sleep... Also running a fever here and there as well. I am realizing how blessed I am in so many parts of my life that the not so fun parts are a little more bearable.

Today was especially hard I do believe because I was extremely tired but nonetheless a little stressful for me.

There are some really awesome things that came to pass this week despite stress and everything else I am proud to announce that I went to my very last Physical Therapy appointment this week. So although it was a sad day at the Physical Therapy office I was very happy to be making these steps of progress.

I am also 2 labs away from finishing my Biology class and getting ready to start up my college English class and history course for the summer. So the hard work will pay off keeping me mostly with my class for everything else! Which is quite exciting.

So with the ups and downs and the longing for a hidden camera to jump out and say surprise I am finally starting to come to peace a little with the life I am living even though it isn't a fun roller coaster ride I am excited to be getting a little more back on track.

I think through this journey I find the true character in my friends and who they are which is neat and sometimes refreshing and other times a little upsetting.

Today I spot-light my friend Chris:

They say adversity brings strength and that it has done through him. I am so amazed at how he has grown and become stronger through the difficult times in his life right now. He has been a role model to me with his selfless characteristics that show who he is through the difficult times for when difficult times arise you can be all me me me! Or you can sit back and say hey how are you doing back? Not always expecting a big answer back but an answer none the less. He has been a close friend for awhile and around a year ago we kind of split but slowly have grown back together. I will always be thankful for his friendship and the things he has taught me.

Wednesday, June 18, 2008

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.

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.


Monday, June 16, 2008

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!


Tuesday, June 10, 2008


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.

Monday, June 9, 2008

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.


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

Lyme Walk Success!

Well first of all the walk was a huge success with over 300 walkers! We raised close to $9,000 in total for the Lyme disease association and had a huge response with everything. We were extremely excited about the large response we got with the people who cared enough to come out for the weekend despite the heat of the day!

So thank you all for the contributions you made and for making the day an over all success and we look forward to seeing you all back next year.

If you attended the walk and would like to say something about your experience at the walk I give you the opportunity to make a comment on what you learned or how it impacted you!

Thanks to all of the support we recieved and continue to recieve as the days continue on.


Thursday, June 5, 2008


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 ( 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!


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!

Wednesday, June 4, 2008

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.


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.

Tuesday, June 3, 2008

Taking a Moment to think... For all you new people- instead of going back and reading every post here is a current update on why this blog came to be

In July of 2005 my life changed- had we known then what we know now we may not be in the situation we are in today. Although here we are pushing forward pushing on.

I was bit by a tick and had a typical bull's eye rash. Through the ignorance of the doctor in the ER I was placed on the wrong antibiotic and no blood tests were taken for Lyme disease. Just weeks later I had my first seizure episode on a missions trip in PA around 5 hours away from home without my parents. From that seizure I developed other symptoms including but not limited to extreme fatigue, constant headaches, and flu-like symptoms.

This was the beginning of my Freshman year and the beginning of Lyme disease treatments after a battery of blood tests I was diagnosed with Lyme disease and had the minimal treatments for the disease.

From then on I was 'cured' from Lyme and all the surrounding fears we had of it. We thought I was going to be back to normal back to regular days hanging out back to being me.

A wake up call came my Sophomore year when at the beginning of the year I started feeling "off" things weren't adding up right and I was struggling in my classes. I collapsed in school in December I was quite sick and we didn't know what could be wrong. Running more blood tests and finding nothing I had the doctors surrounding me baffled and it took the local cardiologist to help with getting me to a Lyme specialist who diagnosed me with Lyme for the second time. What a huge answer to my difficulties in school my slipping in and out and confusion along with seizures, extreme fatigue, pain, and back to back ear and eye infections. Who would've known what that diagnosis would've lead to. Through that time I learned that anything is possible through at home tutoring and the faithful work of your guidance counselor and teachers. Although very tired and weak most of the time I started going back to school 1/2 days by April of my Sophomore year, went on a spring break trip to Florida with the school marching band and things seemed to begin to clear up.

Little did I know in June I would be back in the hospital with another 'episode' resulting in a short stay in NYC where no real diagnosis would be made. We were searching for answers throughout the summer and I was placed on IV by July of Summer of 2007. But during that summer another dream was born. Lyme Walk- For those who can't. A Lyme disease awareness walk that my friend Sarah and I decided would become a reality for what more did we need than for others to realize what I had gone through.

Junior year I was starting out well with ending the summer at band camp and joining the marching band for pre-week. I was excited to finally be getting back to my "normal" life and started school. Within the first week I realized I wouldn't be able to hold my own day in and day out and began missing school around twice to three times a week. I was exhausting myself by going to school. So I decided I would be willing to give up anything to go to school. And started using a wheelchair to get around school. Now if having a weird sock around your upper arm wasn't enough now having a wheelchair really raised questions among my peers. Although I tried to answer them each to the best of my ability. Truth be known it wasn't pure laziness but it was pure exhaustion that was really making me sick.

By October I was doing okay in school traveling across the state and out of state for doctors appointments and I was trying my best to hold my own with my grades to be able to make it to the marching band championships. I would only meet myself half way there maintaining decent grades but missing championships due to another seizure the night of one of our marching band practices. I was bummed out. I ended up being transferred to Rochester about an hour away to another "better" hospital for my treatment. I stayed there for a month meeting some of the most inspirational people but not really getting any answers.

October turned into November and before I knew it I was home back where I belonged after a very long tiring and stressful stay in the hospital. I missed my friends I missed my family and I missed the comfort of my own home.

After that I decided to give school another fair shake with trying to go back after Thanksgiving break. With only another seizure during my last class of the day- I was quickly transferred to Rochester with a scare where I quit breathing in the ambulance on the way up getting taken to another local hospital during the transfer.

Within just a few days of being in the hospital I was released with no problems- or so we all thought. I went to stand with lap top in hand and fell almost dropping my computer. I couldn't walk and had lost feeling in my legs. This was just another hurdle to overcome. I was in my wheelchair and not seeing very much improvement I was pretty upset but trying my best to adjust to his lifestyle. By Christmas I had pushed and got myself walking with a walker! Which was a huge improvement to my lifestyle.

And yet again I became ill February brought new stepping stones to step on. I turned 17 and I was working my hardest to get back on my two feet. Looking forward to prom which was months away but gave me something to hope for. I began seeking more inside my bible and worked harder and also started the blog for the new year. Although things took twists and turns and I fell quickly out of sight.

I ended up in the hospital and then later in ICU in a medically induced coma from seizures. After that date it was confirmed I was having seizures and I was medically diagnosed with some form of seizure disorder. Those days were filled with hospital stays and as soon as I would be on my feet a little more I would be knocking down the doors of the ER on a stretcher. With another scare and the removal of my gall bladder.

Through the nightmarish days there has been some clarity- I walk now without assistance and I made it to prom. Things that we never thought would be possible. I have come a long way from days filled with hospital stays. Although the pain is ever so present my lungs have not completely recovered and so many other things still linger. I can look back upon these 3 years and say- I have come a long long way.

Although this isn't every detail that happened over these past three years this pretty much sum's it all up. I cannot say every needle poke or MRI or CT scan I have had but my arms can sure vogue for some of them. Through 4 picc line's and now a port. My life has changed but I cannot complain because it has been for the better. For "Out of Adversity comes Awareness"- Marissa Angell.

Hope you stop back soon I try to update the blog frequently!


Sunday, June 1, 2008

Your age gives you a title but your heart makes a story - Victoria Wilcox

That's what the teens of Victory Highway youth group are.

They are heard clear understood and willing to help. I am amazed each and every day with how much they have helped me understand the world around me. I am encouraged by their spirits of kindness and their lives and love for others. Today I sold 36 Lyme disease awareness bracelets to 36 youth students. And we raised over $400.00 for the Lyme Walk! I am proud to say that I have a visible youth group who supports, loves, and shows their compassion and shines from the inside out.

We wouldn't be the youth we are without the people we have on our side and the encouragement we have received from our youth ministry staff and pastors and most of all our parents.

So way to go guys!

I just want to say a huge thank you to the two top contributors

Emily and Megan! Way to go girls! Thank you!

Tonight this youth group made my age fit with my heart and I felt like a teen. So it really means a lot to me to say Thanks!