I wish I could.

For any student planning on going into the medical field, for any teenager that doesn't feel blessed...

I really wish that people could know what it was like to be in the hospital for days and have to say to the nurse, I need a commode at the age of 18, 17, 16, 15.. Or I cannot walk can you please help me? Or how about not showering for MONTHS because you have had to become a creative thinker due to the fact your IV is in your chest. Hm. Yeah so I am being kind of blunt because I feel like people have no problem being very blunt with me.

If you didn't wonder. You can stop reading now.

I guess I don't really feel like a heart is an organ I have anymore maybe a brain but not a heart because it seems as though my dignity has been stripped from me and the smallest things are setting me off. I have not been getting good sleep and I am really stressed. I have handed people I trust thoughts and they have butchered them up. I guess I can't be hopeful with things I wanted to be. Some of my friends are thinking about relationships I don't even want to do that right now, after being broken up with and having the person that broke up with me then continue to date someone else and then still feel they needed to consult me for advice about their relationship... I mean it would be nice to be hopeful about dating but I honestly don't see a whole heck of a lot of teenage guys looking for a sick girlfriend who might not be able to walk some of the time.

Not only has it effected that it has effected almost all of my senior year. Hey girls, do you want to go to senior prom? No problem! You can go through photos on facebook and through friends memories and if they're grumpy after prom and extremely tired that's fine! You get to see that as they visit you. That's when you fit in their schedule. How about a senior trip? If you had that in mind no problem because it isn't going to happen because you are sick and it's dangerous and you really shouldn't go without your parents. So with distance considered, no way. How about yearbook, the thing you busted your butt on last year? Do you think you might get in because you helped and you accidentally missed a deadline by A LOT. No that is your fault and that's fine because we're all equal coming out of the high school but when you hear that someone else also bought an ad the same day- No worries! You let that run off like sweat off your back.

So after all of the "normal" things that are going on you try to do some good things... Right? Well cool. Good for you! Get ready to have people breathe down your neck and any little thing that may be seen as amiss you get blamed for. You get e-mails from people and believe me EVERYTHING gets back to you. Even if the e-mail was from my friend's cousin's friend's aunt, that noticed something- you see it, fix it and still hear grief. It's not okay that you're human. You're 18 and you have everything to hold for it. People are breathing down your neck and they feel that treating you like shit is okay. Backing out on things or making it seem extremely difficult is ALRIGHT. You have to pick up these extremely ridiculous puzzles and make them all look good smile, laugh a little and make everyone seem as though it's dandy! Why? Because that's what the world makes it seem like.

My cousin wrote me and said tell the person who felt depressed about your sickness we would gladly trade places so I could be depressed about YOUR sickness. Well isn't that the truth! I guess the world has made it seem that it's not okay to be feeling upset and no one should ever put another kid out or for this matter anyone. I am sorry if you have been a victim of this horrible thing that is really called venting. I am sorry if you have seen me when I have been rude and upset and ready to rip my hair out. I am sorry that you don't see the other 350 days that I am in a semi-decent mood. I am sorry that you don't get to deal with me then. I am sorry that I have been a jerk. I am sorry things are unfair to everyone else. I think it's completely fair that I am sick. NOT I don't know when people thought life should be fair. But it's not. Okay? I get it. Don't keep shoving crap in my face.

K. I am done. I will not be posting any more venting posts this hospital stay. But if you wondered. There it is. If you didn't wonder. Sorry.

I believe

I believe we are the authors of our life story; there is no other that can write it and I can honestly say- it’s one of the few that no one truly knows the ending until it happens. We can think we understand why each thing is happening at the moment or as they pass us by but we don’t definitively know what is truly taking place. Our life story is something of which we can’t plan out or else it becomes moments that are planned and not life at all but a series of things we expect to happen and want to happen and we don’t even see the reality until much later.

A year ago a lot of things were going on at this time of the year but also they were hitting me at tons of different angles. Through my friends, through my family- twinges of pain and trying to understand. I want you to see some excerpts of this- going from October of 2007 to recent months to around exactly a year ago.

October:
friend:
We had practice that night. She was sick and I was worried. She was getting worse and I couldn’t focus on what I was supposed to be doing. I don’t think the fact that the night was extremely stressful helped the situation at all…

Rehearsal ended. She was in a daze.

We got to the area in front of the senior cafeteria. I told her she needed to sit down, but instead she was leaning on me and all of a sudden all of her weight was on me.

I kept saying, “Vic… Victoria…”
No response.
She started to shake… She was having a seizure.

Oh, my God… Oh shit… Oh SHIT!... Get her down on the ground… be careful – don’t let her slam her head on the ground… Holy shit…

My mom’s yelling at me from across the cafeteria, “What’s going on?! What are you doing?!”
With wide eyes and through clenched teeth I told her, “She’s having a seizure!... Somebody needs to call an ambulance…”

I’d never felt so useless in my life. For a while I was kneeling next to her, stroking her hair or rubbing her arms. What else could I do? Once one of the band moms came over to check some things on her, I started pacing. I felt useless. There was nothing else I could do.

Hang in there, Vic.
You’re strong.
You can do this.
I’m here for you.

I’d stop and look on – this was too real. Never had I imagined…
More pacing.
Band moms were coming over and asking me if I was okay. They kept reassuring me: She’ll be okay, you know. They were worried about me as well.

I kept pacing. I just kept nodding my head.

Well I KNOW she’ll be okay – but at the moment, she’s kinda NOT.
YES, I’m okay… I think…

But I felt tears welling up, threatening to escape.

You can’t cry. You can be strong for this. Everything will be okay. It may not

seem okay now, but it will be, and you know it. Don’t cry. You’re not the

one who needs the attention right now. She does. You can’t cry.

She’s the one who needs the help… not you. You don’t need the attention

right now. She does. You can’t cry.

And I didn’t… at least until she left in the ambulance. Once she left, I guess no one could believe how calm I was through the whole thing. While me and my mom started walking toward the car, I couldn’t do anything else. It call came out. I was such a wreck that night. I cried. A lot.

At that point, I didn’t need a message sent to me the next day telling me what happened the night before. I was there. I was right there.

Photos are always intense. I have not done a photo slide show in awhile but as we reached a year of my port being placed and a year of my gall bladder removed some photos stood out looking through the file.

February:

Sometimes silence is golden, other times silence can be used as torture. The silence I think of is not silence at all but the whooshing and whirring of machines working their job. Sometimes people say that silence can be peaceful but I almost wish some noise tonight.

March:

Dear Mom,

These last few years have been extremely tough on you and the whole family as we try to understand what this horrible disease is and what I have in store for me. You've been a simply amazing mother, friend, provider, and spouse to Megan, dad and I. I am touched by how much you care about me and how selfless you are when it comes to the care you have to provide for me or get for me.

As I grow older I not only learn more about you and your character but I am also able to discern more about life and myself in general. You have absolute acceptance of me and you're one of the few that are able to look past the many complications that this disease has handed me. You have also shown me what it takes to love a family unconditionally and how selfless a mother must be when others are in need. Whether it is towards myself or another person that you have come in contact with. Over time you have taught me that giving to others is the best gift of all and that you shouldn’t condemn others of their shortcomings but listen to them and help them become a better person.

Thank you foremost for not only being my mother but also for the people that you have brought into my life through having you in my life. You have most definitely blessed my life in an immeasurable way and helped mold me to become the person I am today. Without you blessing my life I know that I would not be nearly as good of a person and I would probably be less confident and I wouldn’t be able to tolerate as much. When people say I am a good person I have a few people to thank for getting me to the place I am today and for giving me the insight and knowledge that I have and you are most definitely one of those people. I think the thing that I admire most about you is your ability to offer kindness to every person that walks into your life and that you can go out of your way to help someone even if you’re running late or have other plans to do that day. I will never forget the day that you stopped to take a lady from church to the mall from the bank even though we ourselves were running late to a doctor’s appointment. Your selfless approach on life is definitely something that I feel you should be noticed for and should be given acknowledgement for. Thank you so much for gracing my life with your presence and loving me unconditionally.

I want to say I love you. I can only hope that I have imparted a fraction of the love, warmth and camaraderie you have extended to me. A mere “thank you” doesn’t cut it, but thank you anyway.

Love,

Victoria

Almost exactly a year ago to date:

The fear of a child is felt by all and the joy and content of a child is considered by all. If you could remove the pain of a hurting child you would do it instantly, sometimes however it takes a few Popsicles to make the pain a little less tender. A scared little girl with removed IV can quickly turn into a chick watching TV. :)

Today:
Today I think back to these moments I am amazed with how far I have come. I am faced with new things new thoughts and new obstacles but nothing too hard to overcome. I am looking head on to a moving train getting ready to step aside and hop on. Not let this ride pass me by because sometimes baby you gotta do the locomotion! C'mon baby do the loco-motion. I don't think you'll like it, we just have to chance it. I don't want my baby sister doin' it with ease... Getting of the ride now. So C'mon C'mon lets swing these tests and rock these tracks and see if we can't get home with ease. C'mon C'mon the ride will stop now.

Update.

I wanted to update, I have so many mixed emotions about what is going on it isn't even anything concrete. There is not one emotion stronger than any other. I could write about dancing through a storm that is larger than I, or I could write about how I am so excited to see graduation day come and how exhilarating I can imagine the moment of walking across the stage. However I feel things need explanation. Clarification if you will... I wish I had more but I will share what I have, for I this is all I can do.

Tuesday, March 24th I went to the ER with bluish hands and shaking. I felt as though I could not get warm and things were well on their way of heading south. That evening I had a small seizure upon getting to triage after waiting around 2 hours to get to triage. That evening we could not find our thermometer so we had them take my temperature upon arrival to the hospital and it was around 98 by the time we reached triage it had raised significantly. I cannot give an exact number. It was also this night I had a scare with pneumonia in my left lung. There was significant shadowing on my left lung that caused them to believe there was fluid. I also had a fever and I was very drowsy. Two doctors felt I had pneumonia. I became very drowsy in the ER and ended up getting tired enough to sleep and not arouse to anyone even through multiple blood draws and blood cultures. I remember nothing after I fell asleep. I was wiped out. They decided to admit me after taking the blood cultures and since I was not awake.

That week from the 24th to date I have had three more blood cultures. The original blood culture was felt to be contaminated but was positive with coagulase negative staphylococcus and Granulicatella Adiacens both bacterium were growing upon the reading of my cultures. It was a collaborative decision between a infectious disease doctor as well as my PCP to start Vacomycin by Wednesday or Thursday. By the weekend of the 28th, our prom weekend they had decided to discontinue Rocephine or Ceftriaxone. Due to the continuation of fevers they wanted to be sure that they were not drug induced fevers. This confused me until I understood what was going on a little more. The infectious disease doctor consulted with us again to explain what his views on everything were and 1 in 4 patients that he has seen are able to get over this within the 2 week course of Vacomycin. In some cases however, the patient has not been able to get over this hump in that case the port, of which they have now figured to be infected due to certain cultures that have been taken- may not be able to be brought back to sterile. In these cases it results in removal of the port.

My Primary Care Physician stated he felt that my port would have to be removed due to the circumstances and explaining things such as the immune complex along with the fact that plastic has no fighter cells to get rid of infection upon settling in a device such as my port. When my Primary Care Physician met with us I asked many questions including questions about the bacteria and why I would have gotten the infection. He considered this and said among many things it could just be because of all of the pokes that I had received or just a simple cut somewhere. It is very easy to get bacteria into the bloodstream. With all things considering and having my port for a year we were told the risks and benefits of removing the port immediately (April 1st). I asked him to wait until Monday- so we could discuss the thoughts as well as wait for the latest blood culture to see if there were any changes. He said he felt this was a good decision and he would support it. Since I have continued to have high fevers and extreme chills mostly at night and sometimes during the day. We feel a persistent infection is in my port and it will have to be removed. He said chances are the infection is still there. Where the heart has come in, is that the port is in my chest and near my heart. In some cases a heart valve can become infected so they have ordered echo cardiograms to check out my chest cavity to make sure we're covering all of our bases.

What does all of this basically mean? I will need two surgeries that will remove the infected port and insert a new port. Once this happens I should be back onto my road with recovery.

Along this road of sickness I have lost my ability to walk. The sensation in my legs is slowly being lost and my feet are not working properly. I have been working with physical therapy and I believe that I will be okay it is just going to take some working out to get them back to normal. I don't understand what goes on with my legs but I do believe they are always the first to go. I have also experienced some incontinence which is both embarrassing and quite stressful for me. However, this is just a stage in the grand scheme of things and I believe it will be fine.

As far as school- it honestly hasn't crossed my mind until today. I can honestly say I have not picked up my physics book and have not tried to sleep with my American History book to process the information through osmosis. That is for a later date. I have been trying to keep in touch with the teachers I currently have especially my physics teacher because I am not so sure it will be easy to catch back up in that class. However he seems to be confident that he will be able to help me. College is another thought and I have considered taking a year off because with the financial burden and the physical burden I am quite weary of setting foot in that scene if I cannot afford it in any way shape or form anyways. It breaks my heart to consider that yet it seems to be reality at the moment.

I also wanted to go through some basic vocabulary right now that could through some for a ringer:

Port: A port is a small device usually made of silicone or plastic that is surgically implanted beneath the skins surface and connected to an artery that leads directly to your heart.

PCP: Primary Care Physician

Blood Culture: A blood test that is done when serious infection is suspected. It can identify bacteria or fungi that are spreading through the bloodstream. (http://www.thegooddoctor1.com/glossary.html#B)

Coagulase Negative Staphylococcus: Basically is a bacteria in the bloodstream that carries many anti-bodies. It can become severe but is not deadly and is carried within every-one's skin, just like everything- too much of this can be a bad thing.

Graulicatella Adiacens: Also a bacteria within the bloodstream common among prothstetics such as my port. This bacteria is commonly associated with things such as ports or any other sort of prothstetic.

Rocephine (Ceftriaxone) and Vacomycin: Both antibiotics used to treat infection. We have been using Rocephine for the Lyme disease both are IV antibiotics and have been being administered through my port.

If you have any questions please direct them to me I will attempt to answer them. I do not understand everything that is going on at this moment but this is what I understand.

As many of you know tomorrow is Sunday and is church. Next weekend is Easter and I would really love to be at the service and worship with everyone it is looking as though it could be cutting it close getting this all to fit in one week and being healthy enough to make it to church by Easter. This is something I will cross next weekend. However, my admissions counselor shared this song saying it reminded her of my situation. As I listened to it again, it really hit me. He really has never let go of me through the calm and through the storm... The song is You Never Let Go.

There will be an end to these troubles... I can see a light that is commin'!

God's timing is perfect. This is not his disease but I am his work.

(Please ignore the grammar and if it doesn't make sense at times- I am very tired but I wanted to update with the information I had.)

Prom.

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

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

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

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

Still in the hospital and filling a pitcher with tears,

Victoria

This is a post where I give thanks.

This past week has been frustrating and full. It has been overwhelming with what is yet to be done and all the people to contact. My days have been full and my nights are full of sleeping hard because I worked so hard all day that it often pulls into the night hours of getting homework done or doing last minute studying. I am just exhausted. I am starting to realize in this time all of the things I have to be thankful for. I mean I am blessed with so many things and so many huge, huge blessings. I have thought a lot and been talking to a lot of people who inspire me or give me encouragement. I am starting to realize that one of my biggest blessings is my faith. My faith in God and my faith that things will get better, my hope that is strong enough that it gives me a will to help others.

Just a few short weeks ago I was burdened with the thought of me being helpful and hopeful to others. I didn't understand how it was helping me or what it was doing, and to be completely honest I had no idea how I had carried through with so many tasks of speaking kindly and why things were turning leaves the way they were. I didn't understand it. So as I was talking to my youth pastor I was saying I don't know how I did it. I was ready to throw in the towel because it seemed every place I turned the corner there was someone to turn to me and rip down my self esteem question what I believed, or divulge me in so many questions. I didn't understand their questioning and I just felt wouldn't it be nice, if I could see things the way God does. I had a hard time with what was going on and I just wanted to show people and let them see things through my eyes. I wish they knew is all I could think, and soon in the days that followed I felt peaceful and now I am feeling a little calmer. It has been hard and it has been heart breaking and the stress of school, doctors appointments, and the scope that have followed have been stressful on me as well. But now more than ever I realize I have so much to be thankful for.

I am blessed with my creativity and thinking outside of the box because without it, I wouldn't have put together my Christmas Wish List for others and this holiday season would have been a little dimmer. Not only for the people who are getting gifts, but for me as well because I have felt great joy just hearing of their happiness and content. Letting them know that people do care and have found it in their hearts to take the time to send them a package. I am so glad I came up with that idea.

I also have found that even though I don't understand things or even if it is really confusing- that things have a way of becoming clearer. I don't really get a lot that happens and when I do get it a new meaning surfaces later on. Yet, it has been something I am learning it's okay. I am so very grateful for the gifts I have received in the mail already, I have tried to encourage others to buy for the Lymies on my wish list if they can- ignoring my wants and reaching out to others. Just because I feel like it would be a three way gift and benefit all parties involved. I am very thankful for everyone who has contributed to the Lymie Christmas this year.

I am also thankful for the things like my sight, my ability to walk, talk and have an opinion that counts. I am thankful that I am heard. It is so heartbreaking for me to look into other countries and see how women are treated and this year I have seen so many things change in our country in the vision of women and the views of so many other things that I am thankful that I am here. I am glad that I have had "character building" experiences whatever they may have been they have shaped me and changed me for the better. This is just one of those posts that I want to say thank you, thank you for reading, praying, thinking of me when times are tough and sharing your story and walking along side me in this path that we call life. I appreciate it, and I hope that I will be back to posting more frequently this upcoming week- however, if I am not- I wish you and your family a very Merry Christmas and a Healthy and Happy New Year. Christ is really the reason for the season this year and I hope knowing there is something more to life that you find peace above all else, this holiday season and in the upcoming new year- through the financial burden that has been placed upon so many homes.

Good Morning!

Off to a busy day at school but stopping by to leave my mark first. I just wanted to say I am forever thankful for those who have stopped by to give me love and encouragement. In the days that have past and the days that are soon to come your encouragement means the world to me. I am so happy that I am part of the blogosphere- something big and to find so many nice families and people out there. When I ask for help I have received it in tenfold. I have been very interested in opinions and actions of all sorts.

Today I ask a personal opinion. An experience or a thought. I am doing a photography project and I am doing it on the social- cultural issues abortion. I am pro-life and believe that all babies should be given an opportunity at life. So I ask you what comes to mind when you think of pro-life I am trying to get opinions and views of every aspect. One thing that has stuck out in my mind is the thought- One dead, One wounded. If you think about it, it is just that the mother will never be the same after aborting her baby. She is wounded, even if she ignores those feelings for awhile they can come back. She is wounded. This is such a tough society to live in when it comes to these standards. I don't think they have ever really lightened up but now the news is filled with these things and it seems people so young are making life changing decisions. Another that I came up with is The decision my parents made for me, has left me feeling incomplete. All I can think is of the aching girls who yes, made a wrong decision. They have screwed up- but I have screwed up before too and their parents forced them to have an abortion because it was too much to handle. If you don't think it's possible- start reading abortion stories. I have read a lot of them and started doing research and it has been intense, heartbreaking, and moving to read the stories of faces behind this issue.

So I ask, do you have an opinion on pro-life? Do you have a short one sentence profound statement? And do I have permission to use it on my project if I choose to?

Thanks, and remember 1 in 10 couples are infertile- chances are someone you know or love is infertile and would make a great parent.

Today I am thankful for my chance at life and my chance to screw up and make mistakes and learn.

Twas the first day of Christmas...

This season has been everything but peaceful! I have been busy every night of the week and holding on by my pant legs to get everything caught up. Dot my i's and cross my t's! Packages were to be sent homework stacked high as I missed each day I missed. I am sorry for my lack of updates. Last week was difficult and this week will be a race of the fittest to see how much back work I can make up in 5 days. Complete with a photography photo shoot and a bunch of other stuff. I hope to slow down next week when we have off school and I can make priorities and finish portfolio work for college. I have a self portrait to get done and my still life to finish! Plus studying for multiple tests and working my butt off.

I come to you with even more prayer. I have a good friend Meghan Marks that her family's house burnt down this past weekend. I feel so bad and am a wreck about it. Their family has been nothing but good. Her mother also has Lyme disease and she is a wonderful girl. I am trying to think of what I can do for this family. My heart breaks for them as they enter the holiday season with little money to be found. All of the members of the family made it out of the house safely and now we're working on making the holiday a little brighter and hopefully coming together as a community. I am thinking about "selling" one of my paintings to honor this family like you buy chances for $3 and get it. Above is a sample of my paintings. Each painting of mine comes with a story and I would post a photo then it would go for around a month or so. If someone has ever done something like this and would be able to give me some insight. I am hoping to help their family. Another hardship to overcome! Prayers are appreciated.

Victoria

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.

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.

Sick and home.

As much as this blog is a joy to me and I love doing it, right now I am not really feeling up to par. I have been slowly getting weaker and weaker and today I made a hard decision to quit the blog for the time being. Today I can't really find much thanks and I need to focus on things like school and such with the strength I do have. I find myself feeling very weak a lot and my stomach very tight. I don't really care for eating much and I have been sleeping beyond normal hours. I want to focus now in hopes of getting better for the holiday season.
Be well,
Victoria
P.S. Please no sweet treats, I know I have been getting things of that nature and I just wanted to inform those of you who do send me things right now prayer is the best gift that can be offered. Thanks.

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.

Crazy!

Although things have been hectic I am settling into going to school and enjoying most every day of the week! I have been having a hard time keeping up with the pace of school but things are finally starting to pan out. I have been making work up since what seems forever. I keep catching nasty colds and having bouts of illness throughout everything. Although hopefully this will just boost my immune system for later on. Like going off to college! As I have looked back on previous comments and posts and I got a very thought provoking comment- from someone who I shall keep their identity unknown. They left their e-mail to have me respond back as to why all of their comments had been deleted. Now their comment has laid heavy on my heart for days and it has been awhile since I have posted mainly trying to decide how to approach this comment. Now upon deleting comments I usually read them and try to grasp their comment and I feel if anyone else is wondering why their comment has been deleted look at the below list of things that could be included as to why your comment did not stay posted on the page:

1. If your tone of your comment is rude, hurtful, or putting down in any way to either me or others.
2. The comment has personal information included in it such as a telephone number, e-mail address or screen name.

I feel that the comments I have removed have been removed for a personal reason and I don't feel it needs further discussion. It is my blog and I will add or remove information as I see put.

Health wise I have been getting better I feel. I have been off antibiotics for a week now and feel about the same I will be going on some supplements as of next week but the amount of medications I take will be considerably lower. I can only give praise to God for my health slowly being returned. I am very confident about going away to college next year and the stepping blocks of becoming a normal teen once again!


Book club! I want to hear your opinions! I know I didn't update but I was hoping if you didn't talk to me you would continue on to chapters 5&6 we will now move on to chapter 10 this week. If getting to that point is difficult to anyone please let me know! I want to hear from all of you though! If you're interested in reading another similar book and if you have any suggestions for the next book. I personally would like to read another Christian based book. If anyone has a book that they couldn't put down or one they have heard fantastic reviews about please let me know so I can consider it. I hope to hear what you all think and if you would like, let's all guess the future of what will happen next and the moments in the shack! I hope you enjoy the book and are keeping up!

Have a fantastic week and Happy reading!

Also- hope you all are staying HEALTHY during this horrible flu and cold season!

Victoria

An update

I wish I carried good news of great health and wonderful days of school in this update-
However I carry none of the above today.

Friday I was planned to go on a retreat with the youth group for church. A little later that evening after un-packing and making my bed we went to worship somewhere in that time of worship and bright lights I fell sick with a headache and went to bed. Later on in the evening I ended up having around what I believe were to be eight seizures and I was hospitalized for that night into the early hours of the morning. Crushing the plans of going back to the retreat the seizures had really beat me down and caused lots of pain and agony. So I came home to find retreat in my bed for all day Saturday sleeping.

Sunday came around quickly and it my only wish was to go to church and my plans were to come home and finish off my homework to be prepared for school the next day. Although Sunday after weeks of dark stool and now another bought of vomiting I wasn't prepared to go to school. After finally getting in contact with my LLMD there has been talk of bleeding in my stomach. Now Thursday I am still in bed and have been vomiting all week, sore and very weak.

So through Monday- Thursday they took me off almost all meds with the exception of a stomach medication and seizure medications to lighten any load on my GI tract. They have not really done anything otherwise. Of course when you can finally get a hold of your doctor a state away with an idea of getting a scope done in your stomach your local family physician doesn't have time for you until the following week. So my appointment for my PCP is Monday and hopefully then some more answers will be found and we will have more ideas. The pain seems never ending lately and my stomach hasn't settled through the week.

As for school- I have been e-mailing my teachers in hopes of keeping up with the class and not falling behind. I have worked when I can but the work time is short and the rest is great.

Today I am supposed to get a wisdom tooth out they plan on pulling the wisdom teeth out one by one. My jaw has been in quite a bit of pain so upon my visit to the dentist I plan on asking if that is just the wisdom teeth coming in or if it is something he should give attention to now since none of my wisdom teeth have really given me any trouble other than the initial popping through the gums.

So with the up's and down's of health and confusion of the medical world here I am. They do believe the seizures were brought on by the an underlying medical condition and that there is something further going on than what is seen to the naked eye. So hopefully the stomach problems will be answered and we can all have peace of mind.

Our family is also grasping at the bit with other treatment options and potentially trying a rife machine we have pretty much exhausted my GI tract for now and we're searching for other options. The other night on a teen Lyme chat I did talk to one girl who has a rife machine but she has never used it so she doesn't know how effective it is and she is going to try to contact the previous owner's family to find out if it worked. We all are just searching for answers and I am hoping and praying that I can head back to school as soon as possible. It has crushed me to be out of school this week and the agony of a homeschooling basis is already making me think of alternative routes to get back into the groove once again.

This post and update was brought for those who do follow my health and things going on with us on the home front. I just got a comment asking for an update and I thought I would send one out.

I have gotten one call asking if they can do anything right now for our family and my only request is prayer. I have put all of this in God's hands and I will continue to do so. So if you are of any religion or denomination please join any other person in praying for healing or relief in what is going on.

As for the book group: It is still going! I am sorry I haven't updated for that either this week. What a way to end the first two chapters! What are your thoughts about his little daughters in the tent? The author has a knack for writing and I will write some more questions later on and as we get going further! Please feel free to continue to comment.

Thanks for your concern!

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

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

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.

Victoria

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!

Could your life be seen as a Pandora's box?

After watching a Into the Wild with Jake tonight a lot of thoughts arose-

Is our daily life so consistent that we ourselves are afraid to steer away from the American dream push away the all mighty dollar and seek what is left to who we are within?
What are we really afraid of what is our true fear?
Inadequacy?
Failure?
Spiders?
Love?
Snakes?
Blood?
Danger?
Rejection?
Sickness?
What is it that we fear so much that we would be willing to let go of all we have to seek a different lifestyle rather than confront it?

What do I see of my past? What do I hope for my future? Why do I think these things?

I challenge myself with these thoughts pondering the word of the day-

Pandora's Box- n: a prolific source of troubles.

After looking further into the word and reading the did you know I share this about the words:
According to Greek mythology, the problems brought by Pandora's box started with Prometheus. He was a Titan, one of the first Greek gods, and he stole the secret of fire from his fellow gods and shared it with mortal humans. To punish humans, the gods then created Pandora. Each god gave her a gift to make her appealing (her name comes from the Greek word meaning "all-gifted" or "all-giving"). The gods then sent her to the mortals with a box full of evils. Pandora's curiosity prompted her to open the box, and all those ills escaped to plague humanity. Only hope remained to help humans bear their suffering.
(all information on Pandora's Box gathered from the word-a-day calendar)

Do you grasp a Pandora's Box?
A past clutch of uncertainty.

It makes me think about what I am and who I really am. What I am to myself but not to those around me. Could I give my all to really let go and would I let something from my past eat me up to the point I could not escape it until my death made me escape it?

I quote Christopher McCandless' writing into a book "Happiness only real when shared."

So I bring you the raw me the past and present and each chapter of life unfolded to share because what would life be if it was boxed for no one else to see?

I stay up an extra bit to write waiting for some pain to dull so I can sleep but I think greatly about my past how I miss it but how it is in general.

A thought on the past:
But that was still then and this is still now-
Nothing will ever change that...
What could have been will loom above
and what is yet to be will linger in the air yet to be breathed.
For that was then and this is now!
A new adventure yet to unfold!
So live today as full as possible
because this is the only chance you'll get-
At living the present.
Written by: Victoria Wilcox

I post this not to challenge you but challenging myself making myself think digging deeper than what's on the surface searching for the answers of the unknown. Sharing to people who may never see the inside of the hospital the way I did- showing because that's what I can do. I can leave my print and I will not back down.

Although if you feel like it take this chance to think.

This one is for my Aunt Debbie a raw un-edited un-spell checked version of what goes through my mind maybe not an update maybe not anything at all just thoughts jotted down creating an entry.

My Spot-light:

Aunt Debbie-

My Aunt Debbie has continued to support me through each trial and tribulation and you can frequently find a comment under at least one of my posts a week! She has been there to write to the prayer chain she has been there to say hello and she is always dropping notes of encouragement to me in my inbox. In the most unexpected moments I will receive a little note pushing me to keep on going. She encourages my writing and encourages each thing I do with all she has no matter what despite everything she has in her own life she manages to come to my events and this year she has decided to come to the Lyme walk a huge step in my life instead of going to one of our pastors son's weddings. For some you may think she should be at the Lyme walk supporting her niece but she doesn't have to be- and the man who is getting married has been like a son to her so it was a very hard decision for her to make. I honor her for making this decision and her continued strength that she has. I am truly blessed!

Germs!

I watched Uptown Girls the other day and it seems as though I am like Rae more than I could imagine. In my isolated space using hand sanitize like soon it will be ripped from my hands. Okay well maybe I'm not that bad but prom sure did bring lots of unexpected germs to the table leaving me with a horrible sinus infection and yeast infection in my mouth!

What a week it has been getting these things taken care of but both are feeling much better now and I am glad to say I might finally be getting over them! Although one can never be so sure with me. :)

It has been one long week barely stopping for the weekend. I am going to babysit for my family I used to babysit weekly for tomorrow for the first time in months. I am excited to see the little boy Declan. Although he can be quite a handful I think I can take him on. The weekend also will be topped with some quality time with Jake and his family for his cousin's birthday. I am helping him make another ice cream cake! I think I might never get away from the ice cream maker title.

I have started school work again and it's good to be doing it again. I am finding how much I love Biology and how dorky I am but it always helps when you have a good Biology tutor as well! I am excited to finally get the work done.

Just wanted to stop in and say hello for the weekend. Take this weekend enjoy the freedom we have and the people you love and don't forget the men across the seas dying for us in another country as this weekend we are celebrating Memorial day. Let this not be a lost holiday in your family!

Love,

Victoria

Spot-light person:
The guidance office secretaries
These ladies go above and beyond their line of duty each and every day putting a smile on their face and assisting each student with whatever their trouble might be. Helping a lost new student on to their next class or supporting the walk by asking to buy Lyme disease awareness bracelets. (0f which we have many of and if you would like one please e-mail us at lymesucks2@yahoo.com we will probably get you yours after the walk is over but if you would like to place an order please let us know!) These ladies have continued to support me and so many other students each and every day expecting nothing in return except maybe a little respect and a smile in return. They have shown that it doesn't matter the walls that surround you but the spirit you have while you're in the walls that do surround you.

Splendid Saturday- Posted on a Sunday!

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

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

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

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

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

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

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

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

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

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

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

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

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

More Photos Below! Enjoy!

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