A girl's struggle against a blood disease

Guess who is medically forbidden from going to her Prom?
That would be me.

*sigh* I was really upset about this, I wanted so badly to get a date and wear my big dress and be a princess for a night, but this would never happen. The good news is that I'm in good company. A lot of my friends are standing by me and not going either. Instead were going to 6 flags that day to have some fun in the sun instead of staying up all night in a loud room where a seizure could easily happen. I feel better knowing that. It's going to be a great day.

Have any of you ever lost someone? I want to hear their story. I actually have a new one of my own that I wanted to honor. I found out when I landed in Connecticut, that Ben died. His name wasn't Ben, but here it will be. It's easy to make friends with other patients, they're the only ones who really understand. When I was in Oncology at Yale I met Ben who was dealing with his own issues. Him and I were ward friends and then text buddies when he got transfered to Boston. He had a great spirit, I really thought he was going to make it. I was supposed to die, he had more of a chance than me. There is no cure for me, It's clear no matter how they struggle they are stabilizing me. He was different, he was making progress. When we were still planing on prom I was thinking of asking him. He only had 1 month left.
He passed while I was in California. I never got to say goodbye. I don't like talking about it.
Hug those you love. You never know when you'll lose them.

gavemyallforyou is in California right now. Updates on hold.


Treatment in California is going AWESOME. I also got to shop and go to the beach while making all the preparations to move here. Being in LA with a blood disease is so much easier than being in Connecticut because LA has so many healthy choices and vitamins in all the food. I think things are going to get better here. I really do.
god bless everyone! Keep the faith!

I'm really really really sick right now guys.
So much that it's honestly really really scary for everyone. My mother looks like a wreck.
I don't want to get into the nitty gritty, but I have never feared death this much in all my sickness. To make things even better I got really hurt the other day.
Word to the wise: If you have blood diseases that are acting up, avoid standing anywhere near the top of staircases. You'll cut the crap out of your ankle, break your cell phone and bruise your hip bone if you pass out.

They found another. There's a girl in Florida who were calling "Jessie" (To her I'm "Lucky") who has shown some of the same symptoms.
I pity her so much. They caught hers earlier than they caught mine, but she's been having attacks just like me.
They won't tell me how old she is, just that she exists and might be going through the same pain I am.
Were both being tested to see if we match each other in any way. To see if our blood could help the other since normal blood probably will do little for us.
I'm praying for Jessie. I ask you all too as well. Maybe Jessie and I can save each other.
God bless all.

"Don't tell god how big your storm is. Tell your storm how big your god is"

Treatment makes the days pass quicker than I had ever imagined. I don't want to focus on the pain involved with it, but I would like to talk about the emotions.
Doctor Alice has been working a lot on my reflexes and my emotions. Trippy ways of telling how my body is doing by how it reacts to being poked, or pressed or having a lot of something injected into it. We recently started doing this again, but with my own emotions.

it's strange, I quickly learned a lot about myself. What points in me are strongest and weakest. From thinking of things that I'm "Afraid of" to things that "Bother me" I was pretty strong. My muscles wouldn't budge as she tried to move my leg. She got to "something you feel inadequate about" and my muscles broke. I carry myself with confidence, but I know where my own insecurities are. I was strong for a while and then she got to "Think about the sickness" and my muscles broke instantly. She was pushing me around like a rag doll. She started relaxing parts of my body and had me tell her about the effects of my sickness to better understand how my body was working and I started crying on the table. It embarrasses me to recount on how much this has cost me. How badly it effects me, how close I have come at the age of 17 to losing everything.

"You're a very sick girl, and it's for no reason. You're 17. Nothing should be wrong with you, the fact that you're young is what has made you come so far, but you don't deserve this on your head"

I want you to know that I am alive and trying as hard as I can guys. I think the finer points of what is happening to me now should be left a blur for your own security. I can talk only about how I feel, for I honestly don't think i have words for this.

This is a really really hard time right now guys.
gavemyallforyou may be skimping on updates as I undergo treatment.
I'll let you all know what happens and changes, but I can't provide a well written novel each time.

Basically: My new treatment is tearing my body apart and I have a while before it evens out. I think I can feel it working a little bit, and I pray to go that I am right. But my sitting around on gavemyallforyou is going to aggravate it - and frankly I am not welcoming any more pain than is already going through me right now.

( Some personal progress )

I'm nowhere near recovery, but it looks like soon I might have a chance of being able to live with this. They're stalling for time right now, but they think if they can correct a few things it will become like a normal Anemia. I'm still in the Red zone, but they are trying so hard to get me to a place where I can live with it. I sincerely hope they're right. I have a sliver of a prayer and I'm praying as hard as I can.
I love you all and hope you had a wonderful easter. As Christ was risen, I'm trying my hardest to Resurrect myself. God bless and I hope all of you were able to think of him today and know that someone loves you. Even if you don't believe in god; there was a man who died for you to have comfort if nothing else. I know many men have throughout history, but today is a day to honor him. God bless girlies.

Strike 3 for trying to find the Jonas Brothers. I swear a girls simple quest to getting a rock star to read a sign has proved to be possibly more difficult than playing hop scotch with the queen of england.
We went to CBS, but unfortunately Adriana and Abby got in and I didn't. It broke my heart that I had overcome 60 miles, a blood illness which has bound me to a bed to 3 years(intensely for the past week) and the harsh criticism of many spiteful girls to be stopped by a large man with bad teeth and a receding hairline. Worse was that it was such freezing cold outside I began to have a Blizzard(reference the seizure post) from being exposed to such extremes. Eventually security let me un when Adriana came running out to get me. I sat right outside the door to where they were performing bundled up shivering with orange juice and I started Crying. This happens so much, was I really ever going to see them? Adriana began to comfort me when I heard them start playing "Hold On" all my feelings of defeat were put into the back of my mind and we just pushed forward trying to get to them once more. We failed miserably and now must wait until the burnin up tour. But what's important was that we tried our hardest. I also survived a Jonas mosh pit with a full glass of orange juice in my hand after having a seizure which I bet few people can say. We met CJ though! In the middle of talking to me Mandy called him and it was so perfect. I saw her name pop up on his phone and he was just like "Hey babe, I'm getting swarmed, can I call you back in like 5?" and I thought it was funny.

So comes an end to the look me in the eyes tour chapter of our Kevin hunt. At least we have 11 shots at the Burnin up tour! If I make it, I will hopefully be attending 7 shows on the west coast and (hopefully) 4 shows on the east coast. If I am healthy enough, were goin on tour! and I am so not going to give up this easily. I've been to 3 shows, mark my words, by the end of the summer. They shall know us. I just got a phone call from Abby and them saying that they just successfully met the Jonas Brothers after I had to leave to go home and take my meds/rest. The frustration in that is RIDICULOUS. I know it's just not the right time though, It just wasn't meant to be.

Sorry about the A.W.O.L ness. I honestly am 100% bed ridden right now. My going to CBS was a pretty stupid but desperate move, and I knew I wouldn't be able to rest unless I tried.
( It's not goodbye, for I will remember you and I, I'll see you again )
( Megan's story )

I have seriously so much to post to this journal. So much is going on with my sickness right now, and now so much Jonas activity on top of it. There isn't the space in an entry to describe the whirlwind of emotions I'm feeling right now.
But as I lay in bed, I try to educate myself instead of rotting away staring at the painted clouds on my ceiling or hearing Jerry Springer making my dreams nice and angry, and I read a lot. I'm reading Snow flower and the secret fan now, and there's a whole bunch of lines in it that I can relate to like they were written directly to my soul. I love that about literature, a set of words can mean something to a girl who's suffering from having her feet bound in mid evil Asia and mean an entire world of difference to a girl who is suffering of a seemingly incurable blood disease in 2008. One line that caught my eye was "She died 4 days later enduring more suffering and pain than was fair for such a short life." I think one of the thing that frightens me most about the idea of living through this torment, is the thought that what if one day, I must undergo a suffering greater than this?

I don't think it's possible, but if it is, I am 100% sure of what it will be.
Goodnight everyone. Go intake that iron and get lots of rest. God bless.

So It's been 48 hours since they took me off my normal medication and started my digestion.
Human ears should never hear what has just happened with my body, So I will repeat it to none, but pain is an understatement.

I went back to see Doctor Alice again today. She's taken a look at my blood work and thinks she may have an answer.

My body is not accepting iron. The Iron capacity in my body is unusually high for a human. The problem links into my digestion - it has not been working for years. My system is not accepting iron because it isn't digesting iron and that is why I am in such a close to fatal state right now. This shows that there are problems with my liver and spleen and basically all of my organs are exhausted and suffocating. My brain is out of air completely and so I need to sleep. She also ventured into talking about my emotions in this and the stress on my muscles, by relaxing my neck some of the pain in my head dulled.

The basic gist is that if this theory is correct and the medications she gives me work, 2-3 years I have a shot at recovery.
But oh I would never put into words the pain this is causing. The ache of my stomach or the poison in my blood. I so desperately want to believe that she is right. That finally we may have the hope of a cure. Honestly, I never thought such a glorious thought would be so frightening. This isn't instant. The rapture comes with the fire first. They don't know if this will save me, in fact it could possibly kill me. My family is signing forms to allow this to happen without a law suit, but this battle is far from won.
A chapter may soon end, the seemingly 4 years of darkness may have a distant end, but they will be followed by two years of the long broken and twisted road to recovery which I must walk barefoot with no pain medication. The past two days of my life but worse as all it's effects drain my system and leave me alone with the beast. Kevin is in my heart so strong now, begging myself to hold on. To fight for this and get through this agony.

A little bit longer and I may be fine. I see her again on Monday after easter. The time of Christ's resurrection. Perhaps we can resurrect my hope. God bless everyone, please hug those you love every single day.

Last night I was rushed to a specialist doctor for an emergency appointment. The small amount of red blood cells in my body were diminishing even more with my ability to consume food. They found some things - none of which I expected. Were fighting it now, but we have to fight little bits at a time, and the first part is to get my body to consume. I spent the day off meds and then began taking the brand new fleet of medication that came from it. The reason why I wasn't consuming food?

For the last month or so, my medication has stopped having any positive effect on my body. It was hurting me even more by causing nausea and making my stomach reject food. If we hadn't gone, I would have had 2 weeks or less before it crashed. There is such little comfort in these thoughts, I'm just so glad they caught it. They instantly started on methods to make my stomach create more acid. They also gave me more crap for my blood, but there is little that can be done while they are treating my stomach. They are giving me things to keep me alive, basically. The new doctor (Dr. Alice) Thinks she may see a loop hole in my blood, she's going to try something after I can eat and she says if it works, in 2 years I may be able to recover! The thought was amazing and all too good to be true, then she went on to talk about what they were going to try. She started talking about mixing medications and how they couldn't do that, and then they took something important - my pain killers.

If this works, I will be spending 2 years trying my hardest to recover on new meds, but I will have 2 years with nothing to cease the pain of an attack. I want to be strong, but really? I'm petrified. 2 years of my blood running with daggers with NO relief? No help in fighting that? If there was ever a time I needed Kevin, it's now. This is going to be the most painful experience of my life - all hoping for a cure.

The doctors have thought up a way to save me; salvation which brings me to thoughts of Hamlets famous "to be or not to be" Speech. They think I can make it, if they remove my reproductive system. I will never share the details of the agony that that particular system causes me thanks to this, but I have suffered it hoping that one day I can be normal and bare a child, if they removed my ability to procreate that would make the struggle meaningless. But what if this really is a gene like Dr. Alice thinks? I would NEVER want a little genetic copy of me to deal with this, ever. I wouldn't hope this on the worst hateful beings on the earth, not even on some people I know I personally would really like to slap in the face more than once. If I were to spread this to anyone(which I'm not sure if I can. I don't think so but my doctor was a bit concerned that the unidentified part of my blood may be infectious, I certainly would like to know this) it would be the ultimate act of loathing. That type of punishment is not in my hands to bestow upon people, and to give that to my child. I would forever hate myself.

But they need to run MORE tests, I'm a human lab rat right now. they gave me a bunch of pills and watched me for an hour last night and gave me some new ones today. I'm getting more blood work done and they are going to check my liver again. I'm really trying hard not to worry about that, they said I shouldn't and it could just be a fluke reading, but if anything this awful thing has taught me to always check no matter what. I'm exhausted now though.

The past 48 hours of my life have been amazing and horrible at the same time. I saw Kevin in real life and then immediately was brought back to more doctors and needles. Finally they have shown the first hope in 2 years to a cure, no matter what it's progress. Painful, beautiful progress. I can only pray for now that this doctor is right. Until then I am being shut back in my room with more meds and restrictions. My mom woke me up at 7:05 this morning(I lqtm'd) and i had managed to sleep through every alarm and what have you trying to get my medicated body out of bed. I will talk about my feelings on this later, but for now, I am exhausted and it's 2:05. Goodnight and goodbye! God bless!

Well I went! I was seriously worried, I was not feeling good at all, then Mike gave me a call and I knew we had to go.
( Like a Picket fence and a rose garden )

Now the badish news.
It got worse. the day before and the day of my concert I was feeling so awful as we realized the horrible looming truth that we hoped was wrong all week.
-my body is no longer accepting food. I can still intake liquid and my parents have been force feeding my Juices and shakes to try and fix it, but i have not had actual food in 3 days. Tonight at 5pm I have an emergency meeting with a nutritionalist and a Rheumatologist(doctor for bones - taking a closer look at the origins of my blood) and trying our hardest to fix it. Were starting me on different protein shakes and hoping my body starts responding. Hopefully the doctor will shed some light on this because right now it doesn't look like I'm going to eat for the next week. I managed to get 2 bites of a fiber bar in this morning though so I hope it's a good sign. More as this progresses!

I did go to school today - prove responsibility to my mom and that I can go to concerts on school nights. And I did exactly what Kevin loathes. today was the first day in my life I wore sweat pants outside my house. I looked like such a bum but everyone was like "Yup, jonas concert last night" and all my friends from it didn't come - lame! I left a period early (had to stick around through math at least) and came home feeling gross. I actually fell asleep in the Library during a study hall today. Like on the couch, passed out with a book near me tying to make it look like I was doing something - hah! I'm a resident reader in the Library so I kinda lay on the couch a lot. I just passed out for an hour. I felt a lot better after.

I've been listening to Rooney a lot and their song "Shaken up" relates to me a lot. Even though I can't tell what the heck their second verse is about, the first and the chorus seems all to familiar.

Yeah believe it or not - this blog is about having a blood disease - not the Jonas Brothers. Hence gavemyallforyou shall live on!

Today is a day that I have anticipated for so so long. There re 2 beautiful things happening for me today.

The first is that last Sunday i was given the opportunity to sing for the Apostle L. Tom Perry when he visited our assembly. I sang in the choir 3 feet behind him all day and then the congregation got up to meet him. I ran to my father and begged him to ask him to bless me. We waited in line and met him and he decided to one up me on that. He took down my name and illness and brought it back to salt lake city with him where today him, the other 11 apostles and our prophet Thomas S. Monson are going to bless me together. When he said that both my father and I broke out crying. My entire family is fasting today - I have so much faith in the powers of healing from our lord. The 13 people closest to him that may well be walking this earth are blessing me today. I could burst with joy.

Then tonight is my concert. My father is not too thrilled with this idea. Awkward timing for a fun concert, but I know I need to go. Whoever is going tonight, please come meet me. You know what I look like now and you know my name; I don't care if you even believe me, come talk to me and I will show you a few things.
I will be wearing this
http://www.forever21.com/product.asp?catalog%5Fname=FOREVER21&category%5Fname=dresses&product%5Fid=2048186025&Page=all
Lurking around section 4 with my large poster which you have all seen.

I have done so much to prepare for this; I have gotten as much sun exposure as possible, I have slept all day and I have taken the precautions to make sure I will be protected tonight. Medicine and body guard on stand by, Jason and I will be there. Come see us, we will talk to you.

My heart is beating so quickly I feel it is to burst from my chest. Each time I think that right now Kevin is staying in a hotel a mere 5 miles from my house, to think that tonight I will be among the crowd and that he will be looking for me - all I ever asked. I fought so hard to get here. I waited in the pouring, freezing rain/snow mixture we got on that day to get those tickets. I fought the elements, and all nature to make it this far. This concert could not come soon enough. But for now I will go take a shower and prepare for tonight. I break my fast at 4 and then am leaving at 5:30.

My Cinderella story will be complete <3 God bless everyone!

"you need to know what's true and know that the people you love will believe you" - Kevin Jonas
If anyone is human, it's me.

Someone posted a screen cap from my personal LJ somewhere - the post was me being ecstatic at the help you girls have given me. Twisting my words to try and make me look like some mustache twirling villain. Trying to expose me as a fraud of some sort. I know the world would love this to be fake - it happens all the time, no? I've always known there would be those who don't believe me. This wasn't the first person to say they didn't - but it was the first to post who I am.

So my lj is memoriesofyuna I'm 17 and living with a blood disease. Does that make it any different? Does my story touch you less? I know there are those who are skeptical, and you have the right to be - but this blog was made for a reason. It was not to get close to the Jonas brothers. How many times have I posted this? I never asked for the brigade to start and try to get to him; you girls did that for me out of the goodness of your hearts and I can't thank you enough from now to the ends of eternity for letting him know. I want to know who of you have read my story - all of it true and from my heart, I want to know who of you have been here reading and feeling this with me and helping me fight this battle against myself and who will stay by me now. Even if you know who I am. Even if someone thinks I'm lying will that effect you? Lots of people had been thinking I'm lying and in all honesty I didn't even read what they had to say. I don't care.

I never did this for attention or anything - if anything I wanted to be kept out of this. But since you girls know, this is the contents of a post I posted on my own LJ a while ago. I'm over the drama this has nothing to do with anything except me getting better and talking to other girls helping them. I wish I had someone to talk to when this happened to me, and didn't. This is my way of helping those girls. Now what is below is a 100% direct post from my personal LJ that I posted semi recently. One reason it was posted that they didn't believe me is because I don't "look like someone with a blood disease" and I think I have said that on here about 6 times. I posted this on my lj a while ago, showing the progression of it in my life. I work SO HARD to hide it. You could NEVER see how hard I have to work to try and blend in.

I got a new surge of Jonas fans in my lj and the truth is that my personal lj is mostly people I know, The people there have SEEN me suffering from this over the years. I talk about it freely. People started asking questions before I even became #13. So I posted this to recap. It has lots and lots of pictures, feel free to look it over and see if you have your proof. This shows me: what this has done to me and how I changed thanks to this.

( Direct text the cut was called 'restless sleep' )

I would love to stay and talk, but it is really late and tonight has been a really hard night for me. I was actually having a lovely day. I was feeling good, my friend Mandy(ironically) and I went to go get things to wear tomorrow and I was feeling ok. At 2 we started heading back so I could get to my nap and I get a phone call from Vanessa telling me i need to get home right away because this had happened. I drove home at about 80 with one hand on the wheel and one on a phone while mandy - who has always been there and understood right away - watched traffic on my sides.

I missed my afternoon nap and then had to go out to diner with my family. I couldn't eat, feeling just full of nausea. I'm glad I can recognize the adversary in life. That I can see how great of a thing this is and how close I am to seeing him tomorrow (in concert only like I expected this ENTIRE TIME) and how much the world is against it. I won't let it stop me. But I feel really horrible right now, and honestly if I don't sleep I won't be well tomorrow and my going to this may be a suicide. So I need to go sleep now.

But my name is Teresa. I am 17, and I live with hyper Anemia. This is my true story and I suffer this every day of my life. And whether you trust me or think I'm lying - I love you. And I thank those who are with me. God bless.

I have 24 hours! I'm so nervous I burned my face this morning X[! I'm just getting ready to go and buy a dress or something to wear to this. My nerves are everywhere. This post actually talks about Kevin!

OMG HAS ANYONE THOUGHT TO CONTACT ROCCO?!?!?!?! WHY WAS THIS NOT TAKEN INTO CONSIDERATION?!?!
Dude I would lol SO hard if my meeting with Kevin was all the fault of Rocco. Seriously, homeboy is hysterical. I just saw him leave a comment on the JB's myspace about how he's going to see them next week in Atlantic city. God alone knows why Rocco has seen more of Kevin than I have; but i think someone should send him the link to my Beautiful disaster of a sob story (preferably the myspaces friending people) and ask him to help. I haven't heard anything about me meeting them tomorrow so I don't think this is gonna happen yet. My friend took a scrap book I made and is going to give it to them at the VIP thing even if she has to throw it at him on stage.

Just some 17 year old girl's dreams under the cut
( How long will I be waiting to be with you again? )

I'll probably be back later with news - hopefully. Until then it's time to go shopping! God bless girls!

A voice message from Lucky

This was recorded a few days ago - sorry the end is a little rushed, I was tying to fit it in under 5 mins. I just wanted to talk so you guys could hear my voice and make it a little more real. Sorry I didn't mean to cry - I'm really not very strong sometimes. But would you all forgive me if I said I'm only human?

So someone got a fairly angry message from Taylor of Rooney the other day, which I understood (I mean there were only about 100 messages sent on my behalf), I was seriously trying so hard not to make the "When did your heart go missing, Rooney?!" Pun, Robert sent a really really sweet message to Mariah saying that he would do what he could to help. So Robert and Chelsea are pretty much heros to me ♥ When I get tired of my song, I'll totally put them on my myspace. I'm totally gonna go rent his movie and eat pizza with m&m's(except not ew).

Guys my blog is about living with this kind of thing in life - so this isn't only about my story. I want to recognize and send my condolences to tidarling who lost her friend Ansley the other night from Cancer. Thoughts and prayers baby, I'm so sorry that had to be. I don't know either of them personally, but want to honor her loss. Ansley was very brave living with Cancer for so long. I want to remind you girls that I am not the only sick young girl in the world. There are so many others, beautiful wonderful people who deserve all the love and support in the world. The make-a-wish foundation is for them. I am not a girl here to try and get to the jonas brothers through your compassion, I'm a voice of those who's bodies aren't so totally complete. I have heard so many stories from you girls of how your family members or you are very sick and I'm so sorry, it breaks my heart. Were in this together though - remember that. I am your brother your best friend forever bbs.

Warmth returned to the east coast once more today and my heart is back at peace. The father sent me a very nice spell, convenient since I have not been feeling very well. For the past two days I have been wearing a thick jacket in class while all students complained about the heat. No teacher complained about my jacket however, Proof compassion still remains in the world. To add to the chivalry, there was a nice shiny beautiful coke-a-cola waiting on my desk with a hand made lined note paper bow on it in my math class. Apparently Mike made a pit stop for me when he heard I wasn't doing so hot - aww Mike! ♥

A little bit of Jesus under the cut <3
( One day she may change the world )

A few acknowledgments under this cut!
( Everyone knows it's mean to be, fallin in love just you and me )
I feel a little strange having you all calling me a number. I didn't release a fake name because I didn't want like a few names floating the boys way and have them get confused, but I guess you can all call me "Lucky" if "13" is a little weird.

2 days! Goodness in a mere 48 hours I will be in the company of someone I love very dearly - a celebration this is and celebrate we shall! But until then; I need to sleep and more importantly - find something to wear! God bless!

Happy 13th everyone! Oh man I can't wait for the 16th! I can't believe Sunday is but 3 short bitter days away. Oh but to me they seem like ages and ages in eternity.

I kinda had to go to the school nurse to sleep today. Believe it or not I am actually not a regular there. I try my hardest to put on a brave face and bare through class as much as I can. Today however, I knew when I woke up would not be a good day. Reasons under the cut. But it was getting so bad that once I got through my 6th period math class(I need to study that) I went to the nurse who doesn't really like me. No sympathy from her, she thinks I'm a liability on the school and voices it to me currently. Thanks. Awesome to know.

Things that are gross - There may be 2 posts today.
Now We've been talking about the Jonas Brothers a lot, I want to talk about having a blood disease. That's the point of this blog. I'm not here begging god to send me the Jonas Brothers, I mean we all know that's my wish, but I want to be able to talk about this. Now in a past post I gave a brief glance at what an attack is like. I didn't go into detail about it, because it's really gruesome, but the people want to hear it for some reason.

This post is really really disgusting. If you don't have a strong stomach, I don't suggest you click this cut. This cut is here for your protection. This is your warning. I know you're curious, but there are some things you can never un-read
( Ooooo this is an S.O.S )
Painkillers are a girls best friend. There is absolutely NOTHING that could bring solace to me during an attack. There is no comfort, there is nothing that can ease it. I always try to know? Fetal position, Clinging my arms to my chest, Squeezing onto my clothing as tightly as I can and biting down on something. It helps a bit, or so I'd like to think. I just try to put myself somewhere else, you know? This isn't me, this isn't happening. I think of things that need me to fight, things I haven't done, places I haven't seen, and most importantly Kevin. The sweetest and most genuine guy on the planet. How I would never meet him, how I would never even see him and his face - that no picture could ever do justice, he is 10 times more handsome in real life than I ever thought - again. How I would never move to Hollywood and become famous and run into him and make him lose his breath. How I would never be the girl he thought about for even a moment.

Until the end of time, until I'm on your mind it will happen

That's Kevin in this. He's the reason for the tear drops on my guitar, the think that keeps me wishing on a wishing star. He's the reason I held on, the reason I'm not ashamed of my curly hair anymore. I straightened it every single day for years, and I forgot it was curly until a few weeks ago when I fell asleep with moisturizer in it to wake up to a mane of curls. Curls that I wear from time to time that remind me of him. He's the only thing that can make me smile no matter what. I don't get tired of him and he never annoys me. Even his voice off camera yelling "Bad man!" once makes me smile forever. I think he would like me. We have a lot of similar personality attributes. He makes me laugh, and I bet I could make him laugh, but I doubt I could make Joe laugh. Joe seems like someone I would get in a prank war with, but Kevin seems like someone who I could talk to forever. Someone I could be my alone self with, the girl who sings in her hair brush and dances to every song that comes on the radio. The girl that never her blood keep her from smiling and the girl who was an awesome amazing crazy kinda crush on him.

There's a beautiful #13 myspace made for me, that I went to investigate that has a song, "The best of Kevin Jonas" and it's just a big collaboration of Kevin's famous quotes and some that aren't some that are just random, and it made me smile so much. It reminded me that this goofball saved me from peril by just being a goofball.
It's almost 3:pm - bedtime! I'll be back later tonight. Thanks for everything, girls - god bless.

I stayed home sick today. my body has not been getting the rest it needs. We decided to just let me sleep and to skip scripture study and see what time I woke up naturally. i woke up at about 1:30 in the afternoon after going to bed at about 11 last night. I'm sleeping today and returning to school once more tomorrow. I need to be well enough to see them on Sunday and sometimes that can be a challenge. I can't believe I made it. It's just 4 brief days from now. I just hope I can claw my way to the front of that arena.

I just want to make a post about the ridiculous support this thing has gotten.
( I woke up on the roof with my sisters♥ )

Ok. This blog is losing it's point because of the excitement from the Jonas Brothers. This is supposed to be about living with a blood disease. So let's talk about this week.

This week has been ok. Not super awesome but not bad. I have although been loosing sleep hours which are very valuable because my email has been going off until like 2 am. Lots of love girlies, but I'm sorry if I don't get back to you right away. My health needs to come first. I've been trying to rest up more so my going to see the boys isn't an accidental suicide.

( I can't take a day without you here )

I'm going to leave you with one of the scriptures that brings me comfort and makes me stronger. I can recite if by memory and I do each time it hurts too much.

" The Lord is my shepherd, I shall not be in want. He makes me lie down in green pastures, He leads me beside quiet waters, He restores my soul. He guides me in paths of righteousness for His names sake. Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, they comfort me.
You prepare a table before me in the presence of my enemies. You anoint my head with oil; my cup overflows. Surely goodness and love will follow me all the days of my life, and I will dwell in the house of the Lord forever. "
Psalm 23

God bless girls, remember to eat that steak and spinnach! XoXo Lucky

Lucky  #13 would like to wish you all a happy Nick Jonas day. Nick is so brave about his blood disease, it inspires me to be stronger about mine.

So I got a few very very beautiful emails today. First there was progress, my phone went off in the middle of math class to tell me that some people had responded and were forwarding my message to the boys, and then it got better. A response from the street team I believe shows that they know I exist! You girls have successfully spammed the Jonas brothers enough to have them know that there is a girl called 13 who is sick and loves kevin. They are also expecting me at my show. So hopefully he will be looking for my sign, hence mission accomplished! I will totally post a follow up on that. I need to say I am pretty impressed, look at the things you can do in numbers.

First off I would like to thank the Fake jonas brothers street team for posting that bulletin, I must admit I loled a little bit because the Fake JB makes me smile, but the info they posted is a little wrong. I know this is going to get twisted but I need to post this for the truth. And to the fake JB street team: I love you guys, really you rock and the fake JB rock. I hope I live to meet Fake Kevin too. There will always be a place in my heart for him and his cute S.O.S. dance!

I have been diagnosed for about a year, suffering for about 3. They told me I had a time limit about 7 months ago. I have a chance at living longer than a month. My reason I keep coming close to dying is because each attack I have, breaks my system more and more and one day my heart can just crap out all together. I need to be strong, and If I am strong I can beat this.


I won't drag this one on forever. I love you all, god bless you, please go eat a lot of steak and spinach for me.

Edit
So it seems that there are a few girls who like to write out there interested in basing stories off mine. I give permission to anyone who would like to. No law suits here, actually if anyone does write a story about a girl like me, I would love to read it. I know there were a few books that really helped me during my diagnosis, and I really hope that my story can help another girl. Slinking through here could give someone a general idea of what it's like. I just hope this isn't a new theme for Jonas brothers fan fictions. I'm not going to lie though, I totally started writing one about me meeting him in my sickness like a million years ago. What can I say? I have a lot of free time thanks to this. I try to take it in humor, you know? Sure i cry sometimes, but the rest of the time I laugh. It's a serious topic, but we try to joke about it when it's brought up.

Ways you can help?

Guys I am so not begging for a miracle here. I feel awful everyone's talking about buying me VIP passes and I just feel awful. Nobody needs to do that. You're all wonderful, really. I think people think I'm fake and just want to meet the boys, but honestly, I want nothing from you guys on that. Seriously nothing. I mean the very idea of someone stretching their own expenses to pay for me to get something like this just makes me feel awful. I have been such a burden on my family and friends with this sickness, on total kind strangers? I couldn't bear it. You have great hearts and your donations are generous, but even if I got VIP passes, nobody could say if I would actually meet the boys or not. If you want to help, please, if you meet them just tell him that there's a very sick girl in the north east who loves him. I just want him to know.

the life of 13 isn't what you would think.Now I'm not going to sit here and beg you to believe me, but I'm just going to tell my story, and let my diary do the talking. If you want to believe me, then thank you. If you don't, then thanks too.

I was normal not long ago. It seems forever ago. I mean sure I was never reall "Normal" persay, but I was leading a semi normal life. I was so close to being homecoming princess/junior prom queen last year I could have tasted it. My name was all ready to go on the ballot when I had to tell them there was no way I could go. I am still hiding as a normal girl. I go to normal school (I have to randomly disappear for periods of time and my friends understand and worry, but I am still a senior and going to graduate. I kinda have a long running doctors note and my guidance councilor are really supportive) but I am not withering away in a bed. You would be AMAZED at how many of us there are. Girls like me who have problems like this and walk amung everyone. Not all of us look like the poor Jimmy fund kids.
Now I have a personal LJ where I posted some pictures of me through the years with this, but that progression won't be shown here.


I try not to think about the life I had before. I need to focus on rehabilitation.

I'll talk about my condition next time. There's just too much to say.

Hello, everyone,

Honestly I don't know how to start this. I guess there are some girls listening in, and I'm sorry, I'm not used to talking about this. Please bare with me for this is as new and strange to me as anyone else. It is much past my bed time right now.

I will answer any question except
  -who are you
 -are you ___this person___?

My parent's don't know I run this, and I don't think they would be too happy. We don't really discuss it a lot nor do we like other people knowing. My father is very sympathetic to it, but my mother sees it as weakness. That her daughter is deficient and doesn't like people knowing.

-Contacting me
   Anyone can leave a comment here. If there is something you need to take to a personal level I have created an email at request, and it is gavemyallforyou@yahoo.com this redirects to my phone so I should get it pretty quickly. My radio stations are Z100, kc101, webe101, star99.9 and 101.7 the beach.
I don't think there's much that can be done however.

-gave my all for you?
Gavemyallforyou was pretty much the first thing that came to my minds for jonas brothers lyrics and my situation. Even if I completely fail at my quest and I don't make it out, I will know that I gave absolutely everything I had to give. Maybe one day he'll know it too.

If you would like to say anything please comment, I will address it perhaps tomorrow or in some future post. I'm not sure what else I can say right now. This is just my basic introductory post.
Thank you girls who have been there since the very first post and the girls who have heard and come to help. I think it's so beautiful that you are willing to even read what I have to say let alone help me.
God bless you all, guys! You have my love for eternity. XoX 13

Edit: Question - are you real?
I can't prove if I'm real or not, You have every right not to believe me. I knew people wouldn't and that's why I have been waiting so long to post these things. I can't prove this to anyone and I don't ask that you believe me. I wouldn't ever want you to see me have an attack. Only a few people have seen me have a full fledged one and most members of my own family aren't in that number. They are pretty scary, I usually lock the door and curl up in a ball. I think my father is so sympathetic towards it because he had to hold me in his arms until I passed out from pain once. I can describe these things though and these are things that you can't make up. No amount of reading could have prepared me for this. If I had to go back I could have never imagined what it felt like for your blood to hurt. The only way I can describe it, is to imagine that your white blood cells(regardless of however few I may have) turn into broken pieces of glass instantly and begin to flow very fast, especially in your main circulation. You don't need to believe me, you don't need to help me. But I want someone to know what it's like, maybe somewhere else in the world there is a girl who is the same as I am right now who needs this like I needed it. Maybe i just don't want to be alone anymore. If you are here wanting to help me, thank you. I am here posting this because people have asked me to, people have wanted to help me. I am not begging anyone. I just feel a connection to you girls, I feel like we're going through this together.

Other question: How are you now?
I'm holding on. It honestly changes every week. I'll have good weeks and bad weeks. This week was a CAPT week so I got more rest and felt better. The longer my day is the more likely an attack becomes. I am out of the hosptial at this moment. I have not been in there for a while and I try to avoid it at all costs. I will probably be returning for testing reasons, but I have been living with this at home for the most part on medications that only kind of work, none of which dull the pain. I have been seeing therapists who have helped me meditate so I can control it better. If I can't get rid of the pain I can at least pass out and not feel it.