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.
Thursday, July 30, 2009
Sunday, July 26, 2009
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 =)
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 =)
Thursday, July 23, 2009
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! =)
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! =)
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...
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.
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.
(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.Current mood:
adventurous 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! =)
(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...
(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.
(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.Current mood:
content 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.
Subscribe to:
Comments (Atom)
