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.

You know those days... When you avoid your blog because.....

You know those days that you don't post on your blog because there are too many nurses poking you and too much going on it's actually too busy to write up a post? Then you think of a really awesome post to post and everything goes dramatically wrong enough that you now feel you must post about that instead? Okay. Well if you don't I have had one of those days.

I don't even feel like posting about this right now but here we go. They have moved my room again and I am thinking that no one should bring anything because I move almost 2-3 times a week. I am on my 15th day in the hospital and I have a Lyme Walk I feel like I am losing it with. I have a senior year that is a train wreck and I had surgery on Monday. So many have asked about the port- We are supposed to be waiting 6-12 weeks to get the new port if I need one... Right? WELL! Just my luck I got a blood clot in my arm today in my picc line so that was removed after my arm swelled up. I have been told I am depressing. That's super and fine but please don't keep reading if that's what you don't want to find.

I am not really enjoying this at all and right now creativity is lacking. So bare with me. I have a periphal IV in my arm now and they're doing that for a few days. My doctor is now currently out of town, I don't know when he will be back hopefully tomorrow but we are consulting with my surgeon and we're going to see what the options are now. We have exhausted plans A-E just about now and who knows what they're going to do.

If I could just ask for prayer for my family and I right now I have been really stressed and it's reflecting my mood greatly. I am really stressed out and this really isn't the year I was expecting, even the nurses are pretty ready for me to go home. I don't really know what to think.

I will update when I know more.

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

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

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

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

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

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

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

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

Chronic illness aka Q&A edition 2.

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

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

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

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

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

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

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

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

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

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

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

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

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

Flu season

So there is something called the flu and it's widespread across the United States. Everyone you talk to is sick. Now I have gotten it! I can't take any more antibiotics and I am not a happy camper. I am now just praying to be well by Friday. Our youth group is taking a group of girls to the Revolve Tour and my mom is going with us! Yeah!! So now I just need to get better. I will continue to work on that. This is all for now.
Peace!

Smiling from the inside out.

Today has been interesting, well this whole week has been kind of side swiping me. I don't know what to think but I have really kind of been happy today. For the most part anyways. I have found that I continue to find good in others and I just really love people so much. I mean I have really found a lot of places I need to work on but I am just really happy because I feel like right now in my life I am really connected with my core and who I am.

I just really find life exciting no matter what happens because we just have so much going on and then just to see the lives of others and how they are changing. I just can't explain how things have changed over the last few weeks but they have. I miss things that used to be constants for me, like hanging out with friends and the people I hung out with but it's comforting knowing they're still there- they just don't keep in touch as much sometimes... I have also started committing to reading at least one verse of the bible every night no matter how tired I am. I even started liking it so much that there is an alarm set on my phone to do so. I am doing it with a friend from church and he's a really neat kid. I like how he thinks so different from me so that we can discuss things and it is just really interesting.

I have seen how much my faith has changed my life even within the last year... I mean I don't feel like I would be anywhere without that to hold on to. My focus has moved away from man and more to God, it's interesting how that works but with reading the bible I have also found that it helps reinforce things I think. (Psalm 146:2&4- Do not put your trust in princes, in mortal men, who cannot save. When their spirit departs, they return to the ground; on that very day their plans come to nothing.) The scripture spoke a lot to me not only about putting trust in man but also about planning, I mean it basically says our plans come to nothing the day we die. Yet we live in structured society of which says plans must be made, I am not always for living in the moment however how often can we say we trust God with our future? So much that we don't even give it a second thought to talk about it with God?

I am just thinking a lot tonight about so much, I have so much to be thankful for yet there are things that I wish I had back. Things I miss things I desire... I miss my friends most of all and it's hard to think of anything else that I wish I could have back. I really just wonder if they miss me as much as I do them... I also miss the liberties of going out and having fun and living life as a normal teen, like staying out late and not being told that I have medications to take or an IV to do. I guess some things I don't think I will ever get as much, even just a shower today- I had a shower without the needle of my port in and it felt so good... I sometimes wonder if I ever realized how much effort it took to walk or how a shower could feel so absolutely amazing. I almost think you should get the experience of being stuck constantly in a wheelchair or not being able to wash and see how much you can experience and how it feels because it really does give me a whole new perspective.

I don't know where I will be tomorrow or ten years from now, but tonight I am a teenager living a sick persons life and I am ready to go running through the finish line and be done and look back at a race that I can look back and say. Ran hard, Sweat lots, Gave it my all, and Won.

I hope every week from here on out I can find at least one thing to be really thankful for like down in my heart thankful for. This week I am thankful for love of others... I think I will update tomorrow with a post on some other events in my life that just amplify the emotion of love.

Home, Hopeful, and feeling a tad bit better!

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

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

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

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

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.

Crying out

We have some clues and we're moving to answers. Tonight I am so weak I feel so tired and I don't feel like it's going to be a easy road ahead. I feel like someone just beat me all over with a bat put me in a sound magnified room with bright lights shining all over. I am weak and I just want to cry out to scream. This disease is horrible and I hope that some day I can stand with triumph over what it has done to me. I am so eager to make others lives better to save them and show them they can prevent what has happened to me. I wish this upon no one. My heart goes out to those who suffer and I fall to my knees and pray. Oh please join me in prayer as I feel my body weaken and my hot tears trickle down my face. This doesn't seem humane.

I have complete faith this holiday season.

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

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

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

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

Giving it all to you.

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

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

Tonight my Spot- light is on my dad.

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

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.

Just having one of those days...

This week has been a struggle, I am not going to lie. I am sleeping more and more and in pain more frequently. I just feel as though everything has been sucked out of me so much that I don't even know where to begin thinking... Sometimes I wonder do good things last? Then I think- do I even let my good things last. A bad thing from two months ago might still linger in my mind but do I even remember what I was happy about two months ago? I was just thinking about it. Oh well,

Today I am thankful for my mother. I am thankful for her compassion and her dedication to being a mother. She has worked so hard to be my mom and be the constant provider of our home. She went from kissing skinned knees to sitting in ICU rooms to anything in between. She has been one of the greatest and most patient people in my life. She has shown me that there is nothing in life that is worth giving up. She is such a wonderful person on so many levels and today I am glad that she is in my life.

Hope every day you are finding more and more things you are thankful for as well.
P.S. It always makes me really happy when I do the spelling check and blogger says back: No misspellings found.

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.

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

A peak into my space

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

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

A surprise for this upcoming week!

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

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

Victoria

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

Prayer Request

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

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

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

Spot-Light:

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