Friday, January 30, 2009

Prayer

I am asking for a tremendous amount of prayer tonight if you have any other prayer requests please post them in the comments section. There are so many people I know that have been going through difficult times tonight I have a list of them, and I ask that as faithful readers- if you could just pray for those of my friends, family and myself who are in need of prayer today and in the upcoming weeks.

- Prayer for a good friend of mine and her family as they struggle with issues of stress and an unstable environment. Please pray for discernment and an out pouring amount of love as they figure out how to take care of extra children and deal with the greater picture.

- Prayer for the family of sweet little Tuesday as her fight of cancer comes to a close. This little girl sure does pull at my heart strings.

- Prayer for an uncle of someone who is having trouble.

-Prayer for a church that's just opening up. Pray for all of the families that have moved and will be moving in the upcoming months to be a part of this huge sacrifice for the Lord. Read more about this incredible story here.

-Prayer for the victims of fire this past year... Especially those still working to get back on their feet from the fire. In my life alone I know of two chimney fires and a fire that took a family owned restaurant in our area. I know that all of these families need prayer and that at least one family is not back to their old home site yet.

-Prayer for our country and our schools. I ask a huge prayer be poured out to the public schools and the country of which we live in. I hope that you understand that I mean this in so many ways and with the transition of president, and within the schools just a peace of the students. I mean it can be an ugly place for a lot of kids going to school.

-Lastly, I ask for prayer for my upcoming doctors appointments. I get really stressed out and I know that it's silly to however I get very stressed upon going to a new doctor. This is a stressful time for me and my family... I also will be doing my IV in a foreign place and I will be dealing with all of the other new doctor things. It stresses me to no end and I hope that within that time I will find peace and the doctors will be able to shine light on things we have not seen. I am just putting this all in God's hands.

Now I ask you- pick one or a few things and in this upcoming week be praying for those things. I know that it will be tough for me to get on this week as I have a very crazy schedule but I want to let you know that I am praying for all of these matters. I hope that if anything, prayer can band us together in these times of difficulty. My heart breaks for a small child, a lost family member, a test that hasn't been resolved, a house that is gone, a school that seems broken, a piece of glass shattered.

Please Pray.

Thursday, January 29, 2009

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.

Sunday, January 25, 2009

One Word. One Year. One God.

So I was reading some different posts over the last while and I saw this site. However I gave it little thought and kept going on my with my day. Sometimes I can't focus on things or I loose sight of what is going on. I can't focus on things or what I am reading. So if I feel like at those times I get worried I will miss something or miss the message that is being sent so I avoid doing it or reading the action all together.

I realize this post is a little late but I thought about it and went to http://www.myoneword.org/ to see what the hype was about. In that time I went to the site I kind of got a focus on it and the videos really stood out to me. I watched them all and began thinking about my word. What is something that would help me not only live a better life but help me really be able to focus on the Lord even more than I am already. That's when I thought of relax. Sometimes we need to relax before the Lord and let him work in our lives. We need to let things go and just let him take hold. So I want to take my day to day life and relax. I think it really is a word that has stood out in my life. So often I strive to do things and get things accomplished, however are the things I am doing God honoring, I mean the tasks might not be a sin but are they really what God is speaking in my life? Or something I want?

I think that so often I can't relax and I get worked up over things such as getting a project done or seeing a new project but I don't see the daily "wins" as I go through life. The littlest things. It's easy to get caught up in the big picture. I guess it has been really put on my heart to put all things in God's hands and let myself just relax, listen and accept. It's easy to go on and think you're letting God take hold but once you give things to him you're supposed to let go and not stress. There is an analogy I have heard used with sand that you hold sand in your hand and grip it so tight and then you give it to God and then you hold it in your grasp again, slowly things start to wither away and as you grasp it and let go soon it is no longer there at all. So maybe instead of figuring things out 100% of the time it's better to relax.

So my one word of the year is relax.

Saturday, January 24, 2009

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.

Wednesday, January 21, 2009

Praise God!

After four years of being sick I guess I just have known the routine of getting back to walking. I have been so humbled tonight I don't even know what to say other than Nothing compares to the Promise I have in Him.

This morning started the same although I had a little more feeling in my legs, I could stand like yesterday, taking steps was out of reach.

Tonight as I was in my wheelchair I felt like I should get out of my wheelchair and walk and I felt in my heart if I trusted I could do it, it would happen. I stood up and took one step and then another... OH MY GOSH I JUST TOOK MY FIRST STEP IN 3 WEEKS with NO HELP is all I could think. But I focused and took a few more turned on our hall way light and said "hey mom! Check this out!" I walked from my room directly to her room with tears in my eyes. I can't believe it I am walking! I am walking without any help the shaking is going away and I didn't know what each step held but I knew somewhere in my heart that I could do it. I did do it! I have walked around the house I have been walking for just a little while now, and it's almost 11:00 so I will be heading to bed. But all I can say is in the 4 years of my sickness never has God blessed me so huge than to give me the strength and ability to walk after not walking for 3 weeks.

I can only say tonight that I am speechless I have cried many tears of joy and I am so excited, tomorrow is a new day with new things to overcome but hopefully walking is a thing that will stay. Thank you for your prayers and I ask for continued prayer as I continue to get my IV and get well but this is something that will forever stay in my heart in head and make this disease that much more bearable. PRAISE GOD!

Saturday, January 17, 2009

Home!

Hi

The last two weeks of my life have been:

exciting, weakening, loyal, prayerful, weak, slow, loud, quiet, peaceful, eye-opening, sad, depressing, happy, God-giving, musical, interesting, full of wisdom, silent, conflicting, uncertain, oxygenated, full of laughter, found friendships, loss of hope, strength giving, unique, lovely, frustrating, white, painful, close, long, challenging, full of praise, tearful, compassionate, trusting, loss of..., and ever changing.

Today I got home and to come home with my port accessed my medical lingo refreshed and my leg sensations low it is a struggle for me. I sit and I have turned the music on for my blog and I encourage you to sit and listen to the song of choice it's Blessed Be the Name. As I thought of the blog I would be posting my first blog I post when I am home I have thought of so many things... There have been so many thoughts that crossed my mind to post but today I think the words will come as they come. I can't lie to you and say that this week was full of joy and my eyes were opened and I accepted God's will 100% the whole way. I can't say that the pain I experienced was something I understood. To say something like that would be lying but I would like to give you my feelings my raw understanding and the glimpse into the last week. It's not going to be formal and it might be confusing but my strength is barely here and I would really like to be real.
I went to the hospital per my doctors request after having chest pains that Monday night and not being able to have a sound sleep. From there I experienced seizures and pain that was unbelievable. I have struggled to understand my placement in this world and it has been horrible the pain that I was struggling through was shooting through my body and joy has been sucked out of me. To say this all was easy is to lie and I want to be honest while writing this because someday I will look back at this and my only thoughts are when I look back at this I want to see the truth I want to see what I came through. So bare with me.

I went from Telemetry to ICU to Pediatrics within a few days and then I was on Pediatrics for the whole stay in that time I became confused I don't remember visitors and I was lost. Every time I listened to the ipod Blessed be the name came on and I listened to it and cried. I don't know what else to think other than the fact that oh God, how did I get myself here. How did I get to this place in life and how will I get out. Friends and Family surrounded me in the time I needed them most and I had a lot of people pray for me near and far. Today I wonder if I continue to hold onto too much. In the past two weeks I have had many pills that are hard to swallow including the fact that I won't be graduating with an advanced regents diploma. Things that have just been hard things that used to seem simple seem hard and I had reached a point that I was taking things for granted a little bit. Today as I write this post hot tears pouring down my face because I want to be at church I want to hear the pastor speak, I had saved quarters for offering for the past year in a ball canning jar and this was the week to hand them in and I couldn't physically go to hand them in. My heart breaks at these little things, they don't seem like a lot to others but to me they are really the world.

School is not in my spectrum right now just because I have been so sick and I can't make it I have to get an IV infusion everyday and until things balance out a little more it won't be possible to go. I am heart broken I am weak I am sad I could go through 100 other emotions but I won't. People have no idea how big of an impact they have on me. How large visits to the hospital, or a text mean to me and what I think when it doesn't happen. A good friend of mine told me he would get back to me upon getting out of work and the roads turned bad that night so I waited, and waited hoping to hear he was okay. Still now hours later heard nothing. I find myself attached to some people that I find dear and I find them to be really important to me, from their opinions to their actions. A lot has been going on in my life and my world has been rocked. I have a commode in my room and am using a wheelchair an IV pole too. I know this seems very common for some lymie's but to me it is painful. I can't take not going to church because of this disease and missing out on the fun. I miss the people who have been going there for well, forever. It has been hard to get this far and now I must continue to move on. This is a rather sad farewell. I have decided that although this blog may continue to stand it will stand empty from new posts and empty from anything else. Reaching almost 200 posts in less than two years. Blogging has always been for me and I always wondered if people would write and then I did have people write many of them....

But now, now I must go I don't know why but today my heart is so broken and sad and I am so sick now even in my own bed that it seems like I can't really continue to keep posting. Letting all you strangers into my life. You all have been a part of me a part of my growth and a part of my development. If you're new here, go to my old posts I have some good ones there somewhere you just might have to look around. If you're an old visitor find comfort with the posts you have read before. I will continue to post around at other blogs with comments or other things but for now this is a chapter that is closing.

Wednesday, January 14, 2009

1/14 update

Hello everyone. Victoria wanted me to pass along her request for prayers for her. She had seizures last night and cannot feel her legs or move them today. She said that this is showing that the medication is working, but it could be setting her back, unfortunately. She is in a lot of pain and is very weak. Hopefully she will make some progress and she'll be able to still come home in a few days.

Thanks for checking back and offering your good wishes to Victoria!

Sarah

Tuesday, January 13, 2009

1/13 update

Sarah here with another update from Victoria. She wanted me to pass along to you all that some things have improved while others have not. She said that last night was a rough night with maybe 2 hours of sleep, and I could definately hear her exhaustion on the phone. She is back on IV antibiotics as well. However, there was some good news... when physical therapy came today she was able to stand up and she did not pass out. She said they were looking that coming home in 3 days so yay!

Let's hope you'll all be hearing from her regularly again in 3 days...until then check back for updates. Victoria does a very good job of making sure that you are informed!

Sarah

Monday, January 12, 2009

Hello

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

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

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



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

Thank you all for your encouragement.

Victoria

Sunday, January 11, 2009

Waiting, waiting and more waiting

Victoria wanted me to let you all know how she has been doing. She is still in the hospital, unfortunately. She has been experiencing a lot of pain, which is nerve pain radiating from her joints. Last night, she was up until 2:30 am with the pain. I went to visit her this morning and she was obviously very tired from the late night last night. She cannot stand or walk around by herself today from the pain.

Yesterday sounded like an eventful day though, as she got nearly 4 inches of her hair cut off; it looks quite nice although she is not totally convinced of that herself.

She wants you all to know that the answers are very slow in coming, but they are hoping for more in the following week. Hopefully there will be some good answers that come forth.

I hope you all have a very nice week. For those of us in Horseheads, it looks like its going to be cold, so stay warm and keep Victoria in your thoughts and prayers.

Sarah

Friday, January 9, 2009

Yet another update...

I talked to Victoria today and she wanted me to ask you all to pray for her. She said that it has been a stressful day. I do not know the specifics, but I am sure that your prayers will be able to provide her with some comfort.

On a positive note, Victoria said that she was able to sit in a chair today, which is an improvement over yesterday. Keep checking back for updates...you'll hopefully hear from Victoria herself soon, although I can't promise anything.

Sarah

Thursday, January 8, 2009

Another Update

Hello once again! It's Sarah with an update on Victoria. I visited her tonight at the hospital and while she is on "strict bedrest" (her words) she seemed in very fine spirits. She was able to keep five of us entertained for almost an hour, after which I left with our friend Melissa because we didn't want to wear her out too much. She can't wait to wash her hair, be able to eat a pomegranate without choking on it or get out of the hospital, but she's handling it better than I could say I would.

If only her spirits were able to make her any healthier she would be well soon (if that were only how it worked though Victoria would be one of the most healthy people on the planet).

Once again, I leave open the request for get-well wishes to Victoria...also many of you left very nice comments that I am sure will be quite touching to Victoria whenever she can get her hands on a computer! Thanks for always being there for her...you are part of what gives her her strength!

Sarah

Wednesday, January 7, 2009

Victoria's condition

Hello all! This is Sarah Lynch updating Victoria's blog for her...once again she has found her way to the hospital. This time, she had chest pains, low oxygen, and a seizure. I unfortunately do not know much more about her condition. I did speak to her this afternoon and she sounded very weak and tired, which would obviously be expected. Hopefully she will be out of the hospital and on her feet soon, but until that point I am sure she would love to hear from you via cards in the mail. Be sure to check back for updates from me, or better yet, Victoria herself as soon as she is able.

Sunday, January 4, 2009

Just another day.

This break has been overwhelming for me. It hasn't really been peaceful and things have been frustrating. I can't believe how much my favorite holiday turned into the most stressful and unpleasant times of the year. I don't know what has come over me but the last few weeks the joy has been sucked out of the week. For the first time in a long time I skipped church and I had no real desire to go... I have to work on picking myself back up but it has been a really low time for me. After spending the New Years Eve alone and just not getting anything done- it feels really lonely. I am so sick of everything. It has been a rough time. So today I guess, I ask for prayer because it has been so hard for me and I don't even feel like me any more.

Thursday, January 1, 2009

2008 in photos

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