Labor day was rough for me. I was tired and in pain most of the day. It was GREAT to hangout with Zack! Even a week without some good face time with that kid is too long. He's great at keeping my spirits up and helping me empty out my brain when I'm feeling down. I also got to play HALO with Brock, Patrick, Joe, and Kyle today. That was fun too.

I'm not going back to dialysis. This isn't me being stubborn either! =) I have a doctor that cares about me and listens to what I want. He found me another experimental drug to try. My quality of life won't really be any better than if I were on dialysis.. but at least I won't have to drive home three times a week. I will be able to live a closer semblance to a normal life. I do have to go back on my special (aka... HORRIBLE) diet. Today was my last day of freedom. *sigh* It was good while it lasted.

I don't think I'm going to be able to go to California in October. I want to badly.. I've never seen that ocean. But I'm not sure its in the cards right now. I'm got a few other things I need to take car of first (see... I can have adult priorities!!) Maybe a short trip to somewhere south of here for fall break would be good. Who knows.

My birthday is Saturday. I haven't decided how I feel about that yet. I know I should go out and celebrate or something.. but I don't want to make it a big hooplah. I also don't want to have to stress about prep and clean up =) I think that this year will just be spent at home with a good book and a fire. I think that's a good way to spend what could be my last birthday. Quiet contemplation of what I've been given in life and what's to come.

I have been trying very hard to school my emotions lately. I try to put on a happy face regardless of how I actually feel. I'm not trying this to hide my true emotions, but to learn to temper them. I get too mad too easily sometimes, or too frustrated. I had been doing okay with it (so I think anyway.. ) until today. I'm not sure why.. but I got REALLY sick of it. I was crabby and moody all day. It took a great deal of will power to keep myself in check., but I faltered toward the end.

I need to apologize for being so emotional about something that seemed so trivial. It was important to me. It always has been. I'm at a point in my life where I don't want to let go of true friends. But I kind of erupted tonight. Not in anger, but I haven't been telling someone that little things have been bothering me and they turned into big things, in my eyes. So when I got around to addressing it... I'm not sure that I handled it the way I should have. *sigh*

"Fight the good fight of the faith. Take hold of the eternal life to which you were called."
1 Timothy 6:12

I found my big change

I haven't updated this in far too long. A lot of good has been going on with me lately, along with a little bit of the not so good.

I spent a few days last week in the hospital. I got exhausted shopping and ended up being admitted to Olathe Med. yay. I got out Saturday YAY! =) When I got out, I basically discharged myself. Not samrt, I know. But I can't do hospitals for very long at a time. I get figidty and miserable. Upon leaving, I was discussing my future travel plans with my doctor. He asked if I had a deathwish. That hit me kinda hard. Not as hard as Zack though. He was super brutal to me. I will only go to California if Zack goes too. He said he wouldn't go unless I got permission to travel again.

That means going to back to treatments and taking all my meds again. Which kinda sucks. I will be sullen about it for a while, I'm sure. I will probably get moody and cranky too. But it will all be for my own good. This also means I must go back on the special diet of eating only boring food that tastes like crap. woohoo. =-/ That will be the worst by far for me. I enjoy making and eating especially tasty food! now I will just enjoy making and smelling it. *wrinkles nose*

I'm making new friends too, that's always exciting. And I'm getting to know others a lot better. Sometimes I walk around with blinders on and I only notice what I want to notice and not the gifts of friendship that are RIGHT IN FRONT OF ME. yeah.

Oh, I got a car!!! =) she's pretty..... I named her Adelaide (yes, after that Anberlin song... somehow "ransom" didn't seem appropriate for a 2 door light blue chick car...but I considered it!) I love driving it. I'm not sure how much longer that will last though. But I will make it count!

Halo rules. enough said.

So lately I've been REALLY thinking about making a big move. I want out of Kansas. I want a big change. I want to wake up to something new. I want to forget how sick I am. I want to have a new job in a new city and make some new friends. I want to be able to say that there was a portion (however small) of my life that I wasn't a resident of Kansas.

Most of you should understand at least a portion of that. I REALLY want that.

I have been advised by some close friends that it would be a bad idea for me to do that. I love them both very much. They have some very good points. Like that moving would be like running away from my problems... and unsuccessful. Or that I would be leaving behind everyone I love and that loves me... and that's selfish of me. I agree with both of those points.

Lately I have felt very sick. I'm always tired, there's been an increase in pain, and I always feel like I'm going to throw up. Getting up in the morning is getting difficult. All I have to get me out of the house is work and whatever Zack and Liz want to do. I have myself convinced that if I move away that I will be able to forget about all of this pain and such. It's a nice fantasy...

maybe one day it will come true.

As for everyday things, my hot water knob in the bathroom is broken! No hot water for showers until I can get it fixed.... hmm. Also, I have the next two days off from work. I plan on baking my brains out for the boys!! I have a TON of new recipes to try.

I went shopping for a dress to wear at Holly's wedding today. I actually found one that I really like. It's tea length, strapless, and lime green = ) (big suprise..huh?) The only thing that kept me from buying it was that I would love to find a dress that was backless and showed my phoenix tattoo. I'm going to look next week when I go to KC to take Liz and her papa to the airport. Oh, another random fact!! The dress I tried on was a 9!!! SINGLE DIGITS!!! =)) oh baby. I know I'm not losing weight for the best reasons, but I'm getting smaller. That's always a boost of the self confidence.

I'm ready for another tattoo. I don't want to start my leaves or the dragon, that's too much work to get done. I may want to get flames put in the negative space of my phoenix, but I'm not sure yet. If I get them, they will always be there, so I want to make sure that I REALLY want them before getting them... I'm just not sure that it needs the flames yet. We'll see. I have a couple of good tattoos picked out if Kyle or Zack decide to get one. Placement will be tricky, but I'm gonna keep thinking about it. I've even been browsing tat magazines to try and find a place to put them that I just love.... Maybe I'll get a tattoo in California... hmm =D

Work is going slow, too slow actually. I am worried about not having enough money for all my plans in October. That means penny pinching until then = ( BORING. oh well.

I like nights. This is going to sound pathetic.. but I love the serenity. I love that the city nearly stops and that my dogs all sleep =) I love that my house gets quiet and I can just relax and forget some of my problems. I love that I can watch whatever random crap is on the DVR without someone looking at me funny. I love that I can be in PJs and it's not weird (cause I wear them ALL THE TIME. I only put on real clothes when i'm guarenteed to leave the house). It when I settle in and can tlak to Holly and Kyle. I love it. I love nights. Even when I feel like crap... something about it being dark out makes me feel better. =)

I have been getting progressively sicker the last couple of days. I think I have a cold or something. but it kinda sucks. I have been contemplating moving downstairs pretty much permanently. But I'm still not sure. I need to rearrange my living room and kitchen just in case.

Its weird not going to school this semester. I'm happy I don't have to deal with the stress, but it kinda stinks that everyone else got REALLY busy all of a sudden. I want to go back next semester though.

I want to plan and live like I'm not dying. I want to move out of Kansas too. I don't know where, Portland or Seattle would be great! Or I could go the other way and hit Georgia or South Carolina. I want to live near the ocean. I'm even considering Alaska! =) But I need out of the midwest!!! Any good ideas are more than welcome! Ideally, I need to go to grad school somewhere, so if there's a college for me around where I'd like to move.. better.

I am down to only three dogs now! Jane and Jordan got adopted last weekend. The house has been really quiet without them. I still need to find a permanent home for Savannah. (although she's calmed down a TON since we first got her last Thanksgiving) But I have been looking for a great dane or two to fill the silence. =D They are my DREAM BREED!

I haven't been working as much as earlier this month. But I will probably pick up more hours on the next schedule. Work is the only thing that gets me out of the house besides hanging out with people. I'm actually looking forward to it... i know, weird! Also, this month has FLOWN by. I can't believe that my birthday is right around the corner...

October is looking to be REALLY busy for me! I have Holly's wedding the first weekend, going to visit Kyle the second week, a couple of concerts the third week and recovery the last week =) But I'm ready for my life to be a little crazy!

I wish everyone good luck and little stress for this school semester! I know school gets messy and overwhelming, but I'm here if you need someone to help you study or just someone to be a bad influence and make you skip homework for ice cream... =)

wonderful always comes with a disappointment

I've been SUPER busy the last week or so. But things will calm down now, hopefully.

Kyle has been in town since.. friday? It's been wonderful to have him around. It's also a heartbreaker for me. I will seriously miss that kid. It will be hard to listen to BTA now. =( I'm trying to right now and it's only making me cry. grr. He's getting good at ruining my favorite music for me! *sigh* We had a ton of fun this weekend. I am so glad he was able to come up. It was nice to see him one last time.

The injections I have been on for about 3 months are no longer working. I found out last week. So I stopped taking them. I also don't take any of my medications any more either, except pain meds to keep the pain in check. I will not go back to dialysis. I won't. I know how stupid and stubborn you may think I'm being. I do. But I can't do it. I can't let that treatment suck my life away again.

This means I will die. And probably sooner than originally expected. I want everyone reading this to know that I really care about them and I would do anything for them. Its something that can be difficult to say to someone face to face, but I'm going to start.

There's an empty feeling in my stomach right now. (and not just because I haven't eaten yet today..) I'm scared of the future. I'm scared of being alone. I'm scared of being forgotten. I'm running out of strength for this race of life.

Kyle, I wish you all the happiness in the world on your new journey. I will miss you, but I will be content in the knowledge that California is where you need to be. I will miss your awesome hugs and our late night walks. I will never forget your laugh or your sexy dance =) Thank you for always finding time to be there for me when I need you. Thank you for teaching me patience and flexibility. *sigh* You will be sorely missed.

I already cannot wait until October. crap.

not as bad

today was... messy but rewarding.

I went grocery shopping with Liz and grabbed her butt. yup. it was funny too. Then I came home and prepped stuff for dinner at Zack's. While I was doing that I talked to Kyle *GASP!* lol. I went to work, got yelled at... did a little yelling... came home.

Hanging out with Zack was the highlight of my whole day. It was wonderful to relax and make dinner for someone else. (I'm weird like that.) We played Apples to Apples and I was disappointed with the expansion pack I just bought. I was weird... but I kicked booty! =)

I came home and tried to read but only ended up falling asleep. I've been really tired lately, which scares me. I managed to wake up a little tonight to talk to Kyle *GASP AGAIN!* But I still haven't actually TALKED to him. I've given him some information, and we are going to try and switch around a few things for next week.. but I haven't been able to offload what's been on my mind this last week yet. Tonight I told him to go to bed or I would start right now. I feel like I'm going to burst! He'll be screwed when we finally get around to it all.... I started a list. I think I should call Zack or something. He's always good stress relief! =)

Zack has been a blessing lately. He's helping me be crafty and mischievous! =) He's also great when I need someone to listen. Big time. He is a wonderful friend.

I have so much I SHOULD be doing... and none of it will ever get done. That's another list I should start.

I want to go swimming. Oh, and I don't like work very much right now. My dogs need baths and the lawn needs mowed. I need to make a curtain for my closet, get my other curtain back up (it was a victim of Savannah hunting flies...) and start and finish my giant t-shirt project. I have two trips to plan, the events for next week need to be ironed out, and I need to get in to see my doctor.

All I want to do is sleep. All the time. I need a good motivator.

worst day ever

Holy crap. Today was the worst ever in a long time. I was supposed to go home for an important doctors appointment today... but I could not even get out of bed. I was sick to my stomach and the room was spinning, my kidneys felt like they might explode! It was SO painful. My kidneys still hurt.

I have only been out of bed three times today. All assisted (I have to get down the stairs to pee...) I helped Patrick make dinner.. but otherwise he pretty much took care of me today. I was lucky that he had the day off. The dogs were pretty calm today, which helped me a lot. I pretty much slept the day away. I still feel terrible.

I planned a trip last night. I've got most of the details hammered out. I'm feeling pretty good about it. But now there's all this information jammed into my brain! I have the trip to finish planning, another trip to get planned, a big day for Kyle, and now I want to host a PJ party! Oh, and I need to make sinner tomorrow before I go to work to take to Zack's. (that's really just a side note for myself. I really am afraid I will forget...)

All the dogs need baths... ugh. Maybe I can con someone into doing it for me =) I'm going to try at least!

I wore a dress this week! First time since my birthday last year. I may have to do it more often.. it was weird, but maybe I can get used to it. I will at least dress a little nicer. I love my t-shirts, don't get my wrong.. but I have a bunch of cute stuff in my closet that I've never worn. Time to get it out and put it on I think.

Today was an awful day off.

I ATE TODAY!!! LOTS!! =)))))) *BEAMING LIKE A SMALL CHILD!* Patrick took me to Taco Bell where I ate a tostado and three tacos and then to village inn for a slice of apple pie. I can't believe I ate it all, or that I've kept it down! Little brothers can really rule sometimes.

I made Zack a cape for his birthday! =) it was fun, and something I actually want to do again! (do you sense more scheming? cause if you do.. you would be correct!) I'm glad I stayed over and hung out with him last night too. I felt terrible, but it was a good exchange just to get out of the house for a while and socialize with people I don't get paid to work with..

I know Kyle has only been gone a couple of days, but I have gotten SO MUCH done without him around to chat with all the time! The house is a little cleaner, my dogs are getting more exercise, I've gotten a TON of reading done, and I even have been a little crafty! All in all, it's been REALLY good for me.

I work a ton this next couple of weeks. So if someone wants to help keep my occupied and not lazing about the house when I'm not at work.. GO FOR IT! A day at the pool perhaps? or maybe some kind of cookout at the park? Or a game night!! I'm open to suggestions.


I can't believe the summer is nearly over. There was so much I wanted to do! I wanted to go back to WOF, hit up a Royals game, swim in the creek again, paint my living room, spend one whole day laying out in the sun (bad idea, i know.. but i want to anyway!) and watch all of the X-files episodes. Maybe a few of those will still happen.

I think I found a new venting buddy today. We shall see =)

better than myspace?

I decided to make a new blog.. I'm not all that happy with my myspace page, so we'll try this out as well. For a while I'll post on both until I decide which outlet I like more. Until then, here are some of my recent post on MySpace to give you a general idea of how I've been feeling lately. Comment, question, enjoy (or hate) to your heart's desire! =)

How to deal (July 23, 2009)
Current mood: adventurous

Lately I've really relied on Kyle to dump my problems on. Okay, maybe not dump... but he's been there to listen to me rant a ton lately. I'm not really the type of person that does well when I don't talk about something that's been bothering me. Things tend to build up and then I explode all over someone that does not deserve it.

Things have not been going the best for me lately. But I haven't been handling any of it well either. I am not one to withhold from confrontation with other people, but sometimes I feel like I have to make things work. I feel like a confrontation will make things NOT work. I also now feel like if I let things slide any further that I am going to explode. So, the question is... will it be worth it? My gut tells me to wait a little longer before deciding, but my brain says that some people won't change what they are doing just because you are mad at them for it.

Physically... things have been pretty okay. I got some rough news this week. Apparently the experimental injections I am on are not really working for most of the rest of my test group. That brought me back down to reality. I got a little worked up about that. I had managed to let myself forget for a while that I could die soon. This news brought it all back. I was a little brutal to Kyle about it too.. too brutal. I got to thinking about what would happen if I died while he was out at school. It really worried me. I know how I would react if Kyle or Liz or Zack or someone died while I was away from everyone else. I also don't think that Kyle has really let it sink in that I'm going to die. I know that Liz gets it. I'm fairly sure that Zack gets it. But Kyle... he believes in miracles =) (not that they don't exist...) I wanted him to realize that itd going to happen sooner or later and he should be ready for it. I even warned him that the next time I see him could very well be the last. That was terrible. I shouldn't have done that.

After all of that, I realized that maybe I'm already a product of a miracle. I've been struggling with PKD for nearly 9 years.. and I'm still alive. I've been able to stop dialysis and be a part of drug research that could change the way this disease is treated and managed. The drug is still working for me. That's a miracle in itself. I may not get a kidney, I may very well die before the New Year, but my life has been a miracle. Only took me a decade to appreciate it =)

Work has been lovely lately.. eh. (notice the sarcasm....) I love having my boss yell at me for doing exactly what she tells me to do. yipee. I also only get two days off in the next two weeks... not gonna lie, that's something I'm worried about. I'm hoping I can get someone to cover a couple of shifts so I can have another day or two off.

Life is crazy. That's something I've always known. Recently it's been a lot crazier than usual! =) I love it. I dare you guys to keep me busy and make me crazy! =)

Too much! (July 15, 2009)

Let's see... My oldest dog raven has arthritis (so I learned yesterday) she may also be suffering from bone cancer... That put nearly everything else on the back burner for me. She's our oldest dog (even though we've only has her a little under 2 years) and the nearest and dearest to my heart. (don't tell the pups I have a favorite!) =)

I got over the topic in the last post. There's no point in me wasting precious energy being upset about something I cannot change. The whole thing is pointless anyway, because were things to be the way I want them, I still wouldn't be able to be happy. I would just have the knowledge that feelings were reciprocated and not be able to act on them. Things are better this way.

I went to see the new HP movie last night. Mind blowing. I am a HUGE HP geek. HUGE. I have been severely disappointed by the Harry Potter movies in the past, so this time I decided to not watch any trailers or commercials or specials clips of the movie. I would go berserk trying to change the channel or drown out the trailer at the drive in! (I'm sure my friends found this humorous to say the least...) But it worked! I didn't see any of the HP footage and I ended up loving this movie! I've only seen it once and it is by far my favorite.

I managed to eat one whole meal for the last two days. Goal met. (please don't think i'm starving myself.. the medications and my condition combine to leave me with no appetite and a VERY queasy stomach, one meal is quite an accomplishment for me.)

Today's goal - listen to August Burns Red. Maybe I will end up liking them...

Honesty hurts (July 13, 2009)

For the first time in a long time I found it difficult to be honest with someone I care about. I am usually very forward with my thoughts, sometimes dangerously so. But something has been looming on the edges of my thoughts for the last week or so. It was something that I addressed tonight, but it hurt.

I'm not sure that I am glad that I did it either. Usually when i have misgivings about dealing with something I know will be painful, I end up feeling like it's what I should have done. It wasn't like that tonight. I just feel.. stupid. I don't feel okay. I hate feeling vulnerable and confused. Tonight I got a good dose of each.

I have been feeling sick all day. I came home from work early because of it. I know I'm running a fever and I've been nauseous all day. I got some sleep, but now I feel like none of it did any good. Emotions and physical feelings have always been linked with me. I should have know better than to deal with this tonight.

To top it all off, I will probably be sleeping on the floor all week because I have 5 dogs in my bedroom and they tend to take things over.

Goal for tomorrow - eat one full meal.

Ready for what comes (July 10, 2009)
Current mood: content

Lately I've been struggling a lot with my health and why God would put me through this. I have had a very selfish outlook on my life (and death) recently. I went to Cornerstone hoping to give myself a few days away from having to think about how fragile my life is. Stupid me! =) All I ended up doing was being reminded more than I am at home.

I felt pretty horrible the whole time I was there. I felt like I needed to hide how bad I truly felt because I didn't want to worry the guys I was with. I wanted them to have fun and not have to spend energy worrying about me. Well... that as stupid too.

I found out Thursday afternoon that I missed out on a kidney because I was too far away from Kansas City to receive it in time. That was a HUGE BLOW to me. HUGE. I had waited 6 months for that sucker only to be too far away for it to do any good. *sigh* I told the guys and then asked them to help me make Cornerstone worth missing something that could have saved my life. They did not fail me. =)

I went to see Relient K on Thursday night and had a blast. They have always been one of my favorite bands. They played a song called Deathbed at the end of their set. I was bawling about halfway through it. Somehow I had never heard this song before.. but it was devastating for me to stand there and listen to it. The first half of the song left me with this feeling of awful despair. I felt like everything I had done in life was pointless and that death would take me soon and I would have nothign to show for it. I was crying.. hardcore (sobbing even..) Then a random stranger came up to me and started hugging me. Not just a friendly stranger hug... but an all enveloping "i've know you for years and I'm here for you, whatever the need" hug. It was amazing. I never even got his name.. but I know now that God sent him to comfort me. The second half of Deathbed reminded me that struggling against God's will for me is pointless. =) For the first time ever I felt at peace with the fact that I will die soon. I realized that I have the chance to go somewhere so much better than where I am now. I get to look forward to heaven, to relief, to no more pain. I felt so at peace about it all. I've fought this disease for years, all the while knowing that it will probably kill me. I've never been okay with that before.

I got to see Becoming the Archetype twice. =) They are my favorite metal band. (thanks Kyle!) There show on the HM stage was AMAZING. I got to be very close (thank you boys, for keeping me from getting decapitated!!!) =) They played all my favorite songs. I wept through Elegy and Deep Heaven. I never thought I would get to see BTA live. It was a great show, and I was lucky to have been able to see it. I also got to meet the guys. In a round-a-bout way, I ended up with one of Duck's used drumsticks. (thanks again kyle...) So I got it signed. I told Duck a little bit about what was going on with me and why I thought the show was so amazing. He then made it his mission for me to be able to meet and get a picture with everyone else. He was so determined to help me out. It was awesome. Really awesome. I got a signed drumstick, a signed album cover and the most amazing picture ever!!!

Cornerstone ended up being something totally different for me than I expected. But it was exactly what I needed. I enjoyed hanging out with the boys too. =)

Getting home and letting everything that happened to me wash over me.. that hurt. It's hard to think that I will probably not be able to experience most of what has happened to me in the last week again.

But last night, something changed. Forever. I'm not scared of death anymore. I'm not so worried about those I will be leaving behind. I know God will comfort them. I'm ready to walk to my death proud and prepared. I realized that maybe God can use me more in my death than he would have ever been able to use me alive. I have no idea where to go from here. But I hope to show God's love to all that meet me. I hope that I can show others that death is not to be feared. I hope that somehow I can reach out to someone facing death and comfort them the way I have been comforted.