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.
Showing posts with label sick. Show all posts
Showing posts with label sick. Show all posts
Thursday, April 9, 2009
Wednesday, April 8, 2009
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.
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.
Monday, April 6, 2009
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
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.
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:
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:
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.
Sunday, April 5, 2009
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.)
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.)
Wednesday, April 1, 2009
They say... Teamwork is Their Trademark
I have been finding that it's a frequent occurrence around the hospital here. However it doesn't interfere with everything else going on... Well... Maybe... Maybe... It does.
They changed my floor and room today and I think it was almost like ripping my heart out of my chest. I said to my mom it was like taking my family from me. The nurses on that floor have cared for me so much and now I have entered an all adult floor. I type out by the nurses station after my little um, roommate went to sleep. I don't know how to handle having a roommate so close. She has really got me. However she's the sweetest woman I could be blessed with. We chatted for a bit and her name is Florance. She actually grew up with my grandparents. So it made the transition a little easier. I am still scared and nervous. It's like a whole different hospital when you get on the adult floor. It makes me wonder. What would comfort an adult in the hospital? Then I thought maybe if we just made little felt hearts around 1.5". Maybe they would be comforting... Then no. I think it's the walls they're dark. However they can't do much about that.
I don't know what to think of this new adventure to this new floor and being alone. Being 18. All of these things seem weird to me. I still sing and dance in my head I am still my 14 or 12 year old self. I wonder what would make these other patients feel happy and comfortable on an adult floor. Any ideas? Maybe a card? I don't know. What do you think?
I have been daydreaming mostly about dancing- singing and giggling and watching out my window at the clouds. I love to see. I don't really know where today went but it has went fast and I wonder if I spent it purposefully. It has been a good day- my Pastor explained how to travel the world in prayer. Today I tried it I have prayed all around the world for specific missionaries by name. I should be tired and filled with jet lag but I am excited for what plans God has. I daydream about peace about things that give me hope. Really I just daydream about my graduation party. I want it to be perfect. It's all I am holding onto. What makes you keep through the day?
I watch these nurses and doctors pass me as I write this post and they are all on a mission they have direct paths. What is the purpose I ask? It is not the direction it is the intention. I hope they remember they could be in the place that I am in some day.
To answer the question of device it is my port. It was posted about here and here. Thank you for all of your prayer. I hope you all are continuing to do well.
As I am closing this post I am seeing many things and a woman who passed me passes with a shaved head. Her daughter stated I couldn't believe it was my mom she was bald. The mom looked up and said I am bald?! Really bald? And they reached over and had a sack of hair and said yeah! We have your hair right here... That really surprised me. How interesting and what a job. I cannot imagine having your mother not believe about hair... The lady to my left is confused and sitting in the hall to have company as well but a different kind of company a content kind. She has pulled out her IV she looks around and she fixes her hair. She is someone I don't know but she deserves compassion. These people come from all walks of life and as they show up their pieces of stories put together a jumbled puzzle. I wonder, do the nurses that see these patients notice they have some creative minds, some amazing spirits, and a great amount of history within the halls. Do they appreciate their patients?
It makes me wonder... Here I go daydreaming...
They changed my floor and room today and I think it was almost like ripping my heart out of my chest. I said to my mom it was like taking my family from me. The nurses on that floor have cared for me so much and now I have entered an all adult floor. I type out by the nurses station after my little um, roommate went to sleep. I don't know how to handle having a roommate so close. She has really got me. However she's the sweetest woman I could be blessed with. We chatted for a bit and her name is Florance. She actually grew up with my grandparents. So it made the transition a little easier. I am still scared and nervous. It's like a whole different hospital when you get on the adult floor. It makes me wonder. What would comfort an adult in the hospital? Then I thought maybe if we just made little felt hearts around 1.5". Maybe they would be comforting... Then no. I think it's the walls they're dark. However they can't do much about that.
I don't know what to think of this new adventure to this new floor and being alone. Being 18. All of these things seem weird to me. I still sing and dance in my head I am still my 14 or 12 year old self. I wonder what would make these other patients feel happy and comfortable on an adult floor. Any ideas? Maybe a card? I don't know. What do you think?
I have been daydreaming mostly about dancing- singing and giggling and watching out my window at the clouds. I love to see. I don't really know where today went but it has went fast and I wonder if I spent it purposefully. It has been a good day- my Pastor explained how to travel the world in prayer. Today I tried it I have prayed all around the world for specific missionaries by name. I should be tired and filled with jet lag but I am excited for what plans God has. I daydream about peace about things that give me hope. Really I just daydream about my graduation party. I want it to be perfect. It's all I am holding onto. What makes you keep through the day?
I watch these nurses and doctors pass me as I write this post and they are all on a mission they have direct paths. What is the purpose I ask? It is not the direction it is the intention. I hope they remember they could be in the place that I am in some day.
To answer the question of device it is my port. It was posted about here and here. Thank you for all of your prayer. I hope you all are continuing to do well.
As I am closing this post I am seeing many things and a woman who passed me passes with a shaved head. Her daughter stated I couldn't believe it was my mom she was bald. The mom looked up and said I am bald?! Really bald? And they reached over and had a sack of hair and said yeah! We have your hair right here... That really surprised me. How interesting and what a job. I cannot imagine having your mother not believe about hair... The lady to my left is confused and sitting in the hall to have company as well but a different kind of company a content kind. She has pulled out her IV she looks around and she fixes her hair. She is someone I don't know but she deserves compassion. These people come from all walks of life and as they show up their pieces of stories put together a jumbled puzzle. I wonder, do the nurses that see these patients notice they have some creative minds, some amazing spirits, and a great amount of history within the halls. Do they appreciate their patients?
It makes me wonder... Here I go daydreaming...
Sunday, March 29, 2009
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.
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.
Friday, March 27, 2009
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
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
Tuesday, March 3, 2009
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.
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.
Wednesday, February 25, 2009
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!
Peace!
Wednesday, February 4, 2009
Birthday.
Today I am turning 18. So in honor of my 18th year of life I would like to put 18 random facts about myself up because it seems that this is a popular thing to do.
- God is top priority in my life and my drive is given a lot by the force of my faith. I love God with all of my heart and I can't see it any other way. My faith has gotten a lot stronger over the past few years and I have gotten so I can't stand missing church.
- In most of my childhood photos I am dressed up as something either dressing to look like a certain era, or just dressed up and being a ham. I have lots of photos from when I am younger and in all of them I am doing something abnormal. I kind of wonder if I have any that I just smile normal in.
- I absolutely hate starting a new doctor. I hate going there and I hate having them not know anything about me. It stresses me out because I always feel like I am forgetting something.
- Turing 18 is the first age I have felt stressed about turning. I don't want to be 18 for a number of reasons but one being that I won't be a real kid anymore and the bank already sent me a letter saying I was eligible for a new type of bank account.
- I used to be obsessed with keeping my room clean now, I lack motivation to clean my room...
- God is top priority in my life and my drive is given a lot by the force of my faith. I love God with all of my heart and I can't see it any other way. My faith has gotten a lot stronger over the past few years and I have gotten so I can't stand missing church.
- In most of my childhood photos I am dressed up as something either dressing to look like a certain era, or just dressed up and being a ham. I have lots of photos from when I am younger and in all of them I am doing something abnormal. I kind of wonder if I have any that I just smile normal in.
- I absolutely hate starting a new doctor. I hate going there and I hate having them not know anything about me. It stresses me out because I always feel like I am forgetting something.
- Turing 18 is the first age I have felt stressed about turning. I don't want to be 18 for a number of reasons but one being that I won't be a real kid anymore and the bank already sent me a letter saying I was eligible for a new type of bank account.
- I used to be obsessed with keeping my room clean now, I lack motivation to clean my room...
- Painting is my biggest relaxation technique and it calms me down. I haven't found anything else I enjoy doing more- however writing is a close second.
- I absolutely hate crumbs in my bed and will do anything to avoid them even if it means demanding foot washing or changing my sheets at midnight. I need things to be in order.
- Traveling is an awesome thing to do, as long as you're not going to doctors appointments. I hate doctors appointment traveling however I have been out of the country twice to Taiwan and Ireland and I loved it. I hope to go back to Europe again some day. It was beautiful. Taiwan however, not so much but who knows what the future holds.
- I like order and schedule. I would rather have mapped out days and such than a bunch of chaos. I like to know what I am doing in a week advance if it's possible, although many plans don't stick or they fall through last minute.
- Watching the snow fall is one of my favorite activities and I would do it all day if I could, color and watch the snow fall. It's a silent act that's really mesmerizing, thus why I am worried about driving in winter weather.
- When I was younger I used to tell everyone I was going to be a baby doctor. I loved babies and I still do. I find small children to be an amazing thing since we all start as a single cell. The complexity of our minds and everything baffles me. Now at least 14 years later, I am still considering the medical field and I love people.
- Now I see the brain as one of the most interesting things in the body. I can't see it as anything other than something I wonder if we will ever fully understand.
- One of my biggest motivators is my grandmother she was a wonderful woman and I can't imagine what life would be like if I had never met her. She always made me think I could do anything I put my mind to and put a lot of faith in me. She even used to let me cook and peel potatoes and do anything I could to help in the kitchen even if it meant taking a little longer to teach me and watching me cut my finger and learn things the hard way. She never was too busy. I hope if anything I can take the compassion and her love for God, and people and her pace back to my own life.
- I live for the moments I can step out of my comfort zone and overcome something or make myself a better person from an experience. Even just speaking up when I am nervous. However, I think there is a limit that should be put to these moments or else it becomes even more stressful.
- I really am amazed by God and the way he works in people. I think that is awesome and I always am interested to see what his plan is next. I don't agree with his plan 100% of the time and if I was God sometimes I think I would never want anyone to die... However I feel that some of my biggest spiritual growth was when I was hanging on by a thread. Plain and simple God to me is the best thing that ever happened to me and I am in love with him.
- My favorite years of my life were the years spent in elementary school. I loved the wonder I had then and I try to tune back in with that wonder from time to time. I love simple things and I can sit for hours enjoying little things rather than big complex things.
- I am really reliant on my computer and all of the data it stores. I am concerned about how much I use my computer and I kind of hope that I can start to work away from that by the time I turn 19. Hopefully this will be something I fixed over the course of a year. I don't want to adjust to my reliance of the computer though.
- I dislike people who find it their job to be negative. I am all about cheering people up, however I also believe that you have a time that you can be negative but I don't like it if you think it's okay to stay that way for a long time. It really bothers me and I will do anything in my power to let you know I still care about you. I really do love people and I will do my best to give you my undivided attention. If you don't feel like I am giving it to you, you can call me- if I am distracted then, then you know something is wrong with me. I don't usually pick my phone up unless I am ready to talk.
Bonus- One year as a birthday gift.. My twin cousins were born on my birthday. Although at the time I wasn't sure if I was completely thrilled about sharing the date, I absolutely love sharing my birthday with them now. These two little girls are splendid and I love their zest for life and their sweet personalities. Below is a photo of them and their older sister and I the day of my testimony.
Today is my 18th year of life. I am thankful for this year and I am so thankful for the 17th year where I learned a lot about myself. I feel like every year I grow older I am a little more in tune with myself. I am so glad that I have been able to get into my skin and wear out my body a little more this year and I am thankful for everyone in my life. As a birthday present to me- lurkers de-lurk. If you are a reader who has come for awhile and you don't comment, comment. I would love to hear from you! Dad, this means you. :) So to all of the February 4th birthday's Happy Birthday!
Now just for fun because I thought it would be here is my year in review in words- Things that only happen once and happened while I was 17.
Sister moved out and then moved to her own apartment- First steady boyfriend- First surf competition- First time I swam from our cottage to elephant rock, not only facing my fears of seaweed and dark water but also swimming a great amount still being sick and never doing it before- First kiss- First annual Lyme Walk was started by Sarah and I- First time I ever had a problem with chloraprep- First surgery- First time going to camp since I got sick- First small group setting this summer, loved it so much I have a deep passion for making it to my small group at church because I love the setting and the people we have in it.- First time sharing my testimony to others and finding out how much others could care about me. It was an awesome experience and I wouldn't trade it for the world.- First youth pastor I really connected with moved away- Got accepted to my first college- Tackled my fear of public speaking and never looked back.- Found that with God, anything is possible and have learned to pray about everything, still working on the worry about nothing part.- Met one of my cousins who is 30 something for the first time and learned a lot about fishing. I think it's in our blood- Submitted my art and writing to the first contests ever and earned honorable mention on my art, still haven't heard anything about my writing.- Went to my first and maybe only prom I will ever go to- Met my first band in person.- Found my true passion for people and started a lot of things like a Lyme Christmas program and now we're starting a local 501(c)3 program that will be non-profit and can raise money for local activities.
That is my year of firsts and only moments. I am sure there are many more. Celebrate with me, I would love to share cake with you and your family. Go ahead make a cake in honor of the day I turn 18 and share some sugary delight with me! Festivities begin this weekend with a little party this weekend, nothing big just something. (note- if you share cake make sure you let me know so I can see a picture!)
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.
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.
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.
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.
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
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
Friday, December 19, 2008
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.
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.
Monday, December 15, 2008
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
Wednesday, December 10, 2008
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.
Tuesday, December 9, 2008
The Update.
Things have been kind of crazy the past few days. I have been in a lot of pain and my body feels weak. I went to school yesterday and stayed home today and went to a doctors appointment for my stomach and that's where I was informed I would be having a scope done tomorrow. The doctor seemed a lot better than my previous doctor and receptive about the care. I am grateful for doctors like him and I am hoping to be back in school on Thursday. What a week this is going to be. It has been a lot of physical aches and pain and the mental stress of everything. It is so overwhelming going to school and trying to get everything caught back up. I don't even know how to deal with it lately. Sorry this was a place to vent more than a place to spread good cheer but one thing is brought clear tonight. I got a frame with a bible verse in it and it's Psalm 37:23-24. The LORD directs the steps of the godly. He delights in every detail of their lives. Though they stumble, they will never fall, for the LORD holds them by the hand. For now that is what rings true. Below are some random facts about me. I know there are some numbers missing. I don't know where they went. Thanks Kelsey.
RULES: There are 100 statements and you bold the ones you have done. Grab it and play for yourself!!
1. Started your own blog
2. Slept under the stars
3. Played in a band
4. Visited Hawaii
5. Watched a meteor shower
6. Given more than you can afford to charity.
7. Been to Disney World
8. Climbed a mountain.
9. Held a praying mantis
10. Sang a solo
12. Visited Paris
13. Watched a lightning storm at sea
14. Taught yourself an art from scratch
15. Adopted a child
16. Had food poisoning
17. Walked to the top of the Statue of Liberty
18. Grown your own vegetables
19. Seen the Mona Lisa in France
20. Slept in an overnight train
21. Had a pillow fight
22. Hitchhiked
23. Taken a sick day when you're not ill I go to doctors appointments all the time when I feel like I might have been strong enough to go to school.
24. Built a snow fort
25. Held a lamb
26. Gone skinny dipping
27. Run a marathon
28. Ridden in a gondola in Venice
29. Seen a total eclipse
30. Watched a sunrise or sunset
31. Hit a home run
32. Been on a cruise
33. Seen Niagara Falls in person
34. Visited the birthplace of your ancestors
35. Seen an Amish community
36. Taught yourself a new language
37. Had enough money to be truly satisfied
38. Seen the Leaning Tower of Pisa in person
39. Gone rock climbing
40. Seen Michelangelo's David
41. Sung karaoke
42. Seen Old Faithful geyser erupt
43. Bought a stranger a meal at a restaurant
44. Visited Africa
45. Walked on a beach by moonlight
46. Been transported in an ambulance
47. Had your portrait painted
48. Gone deep sea fishing
49. Seen the Sistine Chapel in person
50. Been to the top of the Eiffel Tower in Paris
51. Gone scuba diving or snorkeling
52. Kissed in the rain
53. Played in the mud
55. Been in a movie
56. Visited the Great Wall of China
57. Started a business
58. Taken a martial arts class
59. Visited Russia
60. Served at a soup kitchen
61. Sold Girl Scout Cookies
62. Gone whale watching
63. Got flowers for no reason
66. Visited a Nazi Concentration Camp
67. Bounced a check
68. Flown in a helicopter
69. Saved a favorite childhood toy
70. Visited the Lincoln Memorial
71. Eaten caviar.
72. Pieced a quilt
73. Stood in Times Square
74. Toured the Everglades
75. Been fired from a job
76. Seen the Changing of the Guards in London
77. Broken a bone
78. Been on a speeding motorcycle
79. Seen the Grand Canyon in person
80. Published a book
81. Visited the Vatican
82. Bought a brand new car
83. Walked in Jerusalem
84. Had your picture in the newspaper
85. Read the entire Bible
86. Visited the White House
87. Killed and prepared an animal for eating
88. Had chicken pox
89. Saved someones life
90. Sat on a jury
91. Met someone famous
92. Joined a book club
93. Lost a loved one
94. Had a baby
95. Seen the Alamo in person
96. Swam in the Great Salt Lake
97. Been involved in a lawsuit
98. Owned a cell phone
99. Been stung by a bee
100. Read an entire book in one day
RULES: There are 100 statements and you bold the ones you have done. Grab it and play for yourself!!
1. Started your own blog
2. Slept under the stars
3. Played in a band
4. Visited Hawaii
5. Watched a meteor shower
6. Given more than you can afford to charity.
7. Been to Disney World
8. Climbed a mountain.
9. Held a praying mantis
10. Sang a solo
12. Visited Paris
13. Watched a lightning storm at sea
14. Taught yourself an art from scratch
15. Adopted a child
16. Had food poisoning
17. Walked to the top of the Statue of Liberty
18. Grown your own vegetables
19. Seen the Mona Lisa in France
20. Slept in an overnight train
21. Had a pillow fight
22. Hitchhiked
23. Taken a sick day when you're not ill I go to doctors appointments all the time when I feel like I might have been strong enough to go to school.
24. Built a snow fort
25. Held a lamb
26. Gone skinny dipping
27. Run a marathon
28. Ridden in a gondola in Venice
29. Seen a total eclipse
30. Watched a sunrise or sunset
31. Hit a home run
32. Been on a cruise
33. Seen Niagara Falls in person
34. Visited the birthplace of your ancestors
35. Seen an Amish community
36. Taught yourself a new language
37. Had enough money to be truly satisfied
38. Seen the Leaning Tower of Pisa in person
39. Gone rock climbing
40. Seen Michelangelo's David
41. Sung karaoke
42. Seen Old Faithful geyser erupt
43. Bought a stranger a meal at a restaurant
44. Visited Africa
45. Walked on a beach by moonlight
46. Been transported in an ambulance
47. Had your portrait painted
48. Gone deep sea fishing
49. Seen the Sistine Chapel in person
50. Been to the top of the Eiffel Tower in Paris
51. Gone scuba diving or snorkeling
52. Kissed in the rain
53. Played in the mud
55. Been in a movie
56. Visited the Great Wall of China
57. Started a business
58. Taken a martial arts class
59. Visited Russia
60. Served at a soup kitchen
61. Sold Girl Scout Cookies
62. Gone whale watching
63. Got flowers for no reason
66. Visited a Nazi Concentration Camp
67. Bounced a check
68. Flown in a helicopter
69. Saved a favorite childhood toy
70. Visited the Lincoln Memorial
71. Eaten caviar.
72. Pieced a quilt
73. Stood in Times Square
74. Toured the Everglades
75. Been fired from a job
76. Seen the Changing of the Guards in London
77. Broken a bone
78. Been on a speeding motorcycle
79. Seen the Grand Canyon in person
80. Published a book
81. Visited the Vatican
82. Bought a brand new car
83. Walked in Jerusalem
84. Had your picture in the newspaper
85. Read the entire Bible
86. Visited the White House
87. Killed and prepared an animal for eating
88. Had chicken pox
89. Saved someones life
90. Sat on a jury
91. Met someone famous
92. Joined a book club
93. Lost a loved one
94. Had a baby
95. Seen the Alamo in person
96. Swam in the Great Salt Lake
97. Been involved in a lawsuit
98. Owned a cell phone
99. Been stung by a bee
100. Read an entire book in one day
Friday, December 5, 2008
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.
Thursday, December 4, 2008
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.
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.
Wednesday, December 3, 2008
Giving Back
This Christmas I have strongly focused on giving back to people. Every day for advent I am doing something special for someone in my community. I decided that the Christmas holiday is a very important holiday to feel loved, to know that people care. I know that may sound corny but some people feel like no one does care and I think we all go through those days.
This holiday season, if you don't have a charity to give to or are looking for a way to give back- I would like to encourage you to buy a Lyme disease afflicted teen a gift. If you're new to my blog, I want you to know that I don't ask for money constantly and I don't push too much charity stuff for Lyme. But as I have seen some of my friends that are sick with this horrible disease it has strongly broken my heart. I am giving to a lot of different other sick kids this year in hopes to reach out and I encourage you to do the same. Below are bio's of the kids involved. Click here if you would like to get involved in this. I am really hoping I can see the kindness of healthy strangers pull through.
We kept all the wishes under $20 and the only real request I have is that you write a Christmas card out to them with a message. If you think about it, 4 people put in $5 you have enough money and it's only $5 and then if all of those people give a card it's like a shower of cards. You really don't know how much that means to someone who has been sick and rarely gets mail. It really is the thought that counts. Please e-mail me if you would like to buy a gift because I am leaving the wish lists up until Christmas Eve. to keep it a surprise I am not taking down the items that have been granted. However I am not going to keep rambling if you would like more information please e-mail me. If you cannot give this year, I request prayer for all of these wonderful teens who are suffering greatly and all of them are not able to go to school on a regular basis, so I ask for prayer the greatest gift of all.
Each link on the person's name takes you to their wish list.
Alex H.- Alex has been sick since she was 11 years old. She was always healthy. She began having weakness in her left arm and within 9 months she walked her last steps. The weakness traveled from her left arm/left leg/right arm/right leg and then respiratory. In 2 more months she went into respiratory distress and Dr's said she would not survive the night. Alex was airlifted and put on a vent/trach and a g-tube inserted for nutrition. Today, Alex is completely paralyzed unable to move, breathe, eat or talk. However, she understands everything and can slightly move the corner of her mouth to yes questions. She believes someone is going to help figure this out and help her be well again. Alex has an identical twin, Jaci who is healthy. Alex is the only one who has no diagnosis.
Candice M.- I'm Candice, I'm 19, and I've been battling lyme for about 3 years now. I was only diagnosed 7 months ago, so for the first couple of years of my illness I just tried to push through. I went off to college last year, and that's when my body started to push back. I became so ill that I had to drop out and move back home in the middle of the year, and I've been at home struggling ever since. Hopefully the holiday season won't be so bad. I wish all of the lymies out there a happy and healthy holiday (or at least a stable one, that's just what I wish for!). Merry Christmas!
Jeff K.- My name is Jeff. I'm 16, and have had Lyme for 3 1/2 years. After relentless treatment, more needles than any hospital can carry, and unbearable stress and problems, my symptoms have barely let up. I love my parents so much, they've spent nearly their entire fortune just to get me better. Unfortunately that will not last forever.I have severe fatigue, so I can't really do much besides lay around. I listen to a lot of music and play a lot of games...and that's pretty much it.
Kayla P.- I'm Kayla and I just turned 19. I have had Lyme for 5 years now. I love to read, do anything artsy and crafty like beading and drawing, watching movies and listening to music.
Alex H.- Alex has been sick since she was 11 years old. She was always healthy. She began having weakness in her left arm and within 9 months she walked her last steps. The weakness traveled from her left arm/left leg/right arm/right leg and then respiratory. In 2 more months she went into respiratory distress and Dr's said she would not survive the night. Alex was airlifted and put on a vent/trach and a g-tube inserted for nutrition. Today, Alex is completely paralyzed unable to move, breathe, eat or talk. However, she understands everything and can slightly move the corner of her mouth to yes questions. She believes someone is going to help figure this out and help her be well again. Alex has an identical twin, Jaci who is healthy. Alex is the only one who has no diagnosis.
Candice M.- I'm Candice, I'm 19, and I've been battling lyme for about 3 years now. I was only diagnosed 7 months ago, so for the first couple of years of my illness I just tried to push through. I went off to college last year, and that's when my body started to push back. I became so ill that I had to drop out and move back home in the middle of the year, and I've been at home struggling ever since. Hopefully the holiday season won't be so bad. I wish all of the lymies out there a happy and healthy holiday (or at least a stable one, that's just what I wish for!). Merry Christmas!
Jeff K.- My name is Jeff. I'm 16, and have had Lyme for 3 1/2 years. After relentless treatment, more needles than any hospital can carry, and unbearable stress and problems, my symptoms have barely let up. I love my parents so much, they've spent nearly their entire fortune just to get me better. Unfortunately that will not last forever.I have severe fatigue, so I can't really do much besides lay around. I listen to a lot of music and play a lot of games...and that's pretty much it.
Kayla P.- I'm Kayla and I just turned 19. I have had Lyme for 5 years now. I love to read, do anything artsy and crafty like beading and drawing, watching movies and listening to music.
Lucy M.- Hi everyone : ] I'm Lucy, I'm 18 years old and have had Lyme for 11 years. One of my favorite things to do is paint.
Makayla B.- Hi, I'm Makayla and I am 18. We believe that I have had Lyme since birth, so I have been battling this disease for a while. But I continue to fight, and am determined to beat this disease!
Sami S.- Hi :) I'm Sami.. I'm seventeen years old.. I've had Lyme disease for the past three years.. I used to play volleyball and basketball before I got sick but now I can't.. I like to spend time with my little dog Lynny and my boyfriend that I've been with for over two years.
Victoria W.- This is my wish list, I am also the creator of this group. I have had Lyme since Summer of 2005. Right now I am home a lot and I have been pretty sick with my stomach and everything else. I have a seizure disorder and nerve problems as well as brain cognitive problems... You can find my full story at http://vicupdates.blogspot.com/ If you have any questions please e-mail me at victoriawilcox7@yahoo.com. This group really isn't about me but about all of the other colorful people who deserve a wonderful holiday season!
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