Learning To Live

So I finished writing this, I think. Here you go: The other night I was at a party, and as everyone was sitting around the campfire chatting the topic turned to pain and IVs somehow. I really don't think I had anything to do with this topic change, surprisingly. One of my friends commented on how much it hurts when an IV is pulled from your hand. I assured them that it's much more painful when the PICC line running from your elbow to your heart is pulled out. All 54cm of it. Another friend of mine commented on how much her back hurt - and my first instinct was to throw her out of her chair for even mentioning back pain. The second instinct? Show her what real pain is. But I would have no idea how to inflict this much pain on someone. I'd have to call my old buddy Himmler. My back pain is so bad that I can barely stand. Sitting for long periods of time hurts. So mostly, I lay around. This morning it hurt so much I couldn't get out of bed. I literally couldn...

This afternoon I think I might spit out all the crap I'm feeling. I haven't been blogging because I don't really want to talk about what has been going on. Because if I talk about it then that makes it real and I really don't want any of this to be real. I have fallen off my wagon of goodliness, and I don't know how to get back on. I'm running behind it trying to catch up and every time I reach for it to jump on, I fall on my face. I'm at the point where I need to decide whether to just lay face first in the dirt, or if I'm going to get up and try to get on my wagon of goodliness again. ...I may censor what I have to say about some things, however, because I don't want to piss off most the people I know. ...And yes, Kyra , I would love to have a guest rant from you :-) I think this blog needs a little Palin-Bashing. Wait and see! One very pissed off rant about the world coming up!

*I'm too sick to care. *My throat hurts. *I am bored. I'm tired. I want to feel better. *I can't watch Dancing with the Stars without crying now. I want to go back to dancing so badly. *I'm done now.

A few years ago there was a terrible winter storm at my grandparents' farm in IL. Beautiful, but awful. Click on these top two - it's WORTH it! Welcome to Nowhere, USA. A tree nearly hit the house.

I got this: "Carrots, Eggs, & Coffee! A carrot, an egg, and a cup of coffee...You will never look at a cup of coffee the same way again. A young woman went to her mother and told her about her life and how things were so hard for her. She did not know how she was going to make it and wanted to give up, She was tired of fighting and struggling. It seemed as one problem was solved, a new one arose. Her mother took her to the kitchen. She filled three pots with water and placed each on a high fire. Soon the pots came to boil. In the first she placed carrots, in the second she placed eggs, and in the last she placed ground coffee beans. She let them sit and boil; without saying a word. In about twenty minutes she turned off the burners. She fished t...

The very first plant I took care of while living on my own. I'm only on plant #2, because I'm terrible at it. But this one lasted a couple years.

*My dad is a wonderful person. He gets me and knows how to help and why can't he live closer to me??? And why can't my mother live farther away??? *I'm thinking of a family friend who is in critical condition at a hospital in Austin, TX. Her mother is one of the best female role models I had growing up - especially in high school. If you're the praying type, please pray for this family. They are really good people, and I've known them since I was born. *I have a friend who is the coolest chick I know. She oozes coolness, and I'm kinda jealous. Not kinda jealous - really jealous. I was going to write a long essay on this - about how no matter what I do, I just don't FEEL cool enough. I think I picked this complex up in elementary school. *I'm tired. And yes, I'm physically tired, but that's pretty normal. But right now, I'm EXHAUSTED. And it won't go away. I was so happy post-surgery when I was getting shit done and dancing an...

Yes, my mother left this morning. Do I feel bad about openly calling her the "Evil Bitch" in my public blog (that my father reads)? A little. Not bad enough to take it down. I don't know what her problem is, but I think I need to find ways to keep her away from me when I'm sick. It's convenient for her to come down because she doesn't work, and heck, she's my mom, but as soon as I'm feeling a little better we fight. No, we don't fight so much as she yells at me about everything and then there's a point when I can't take it anymore so I yell mean thing back - like yesterday I told her that her life consists of sitting on the couch with the dog. Oops. Then she informed me of all the chores she does. Chores aren't a life, Mom. Having friends or some activity you really love (besides the Home and Garden Network on Television) is a life. I don't want my life to stop just because I have to be on pain pills because without them th...

Me being nerdy - I love the periodic table! Last winter... snow came before the leaves could go away. :-(

*What's so wrong with the "New Facebook"? I find it just as annoying as the old one - although I spend less time on applications with this format - so I probably waste less time overall. *Shit, I forgot. That's the drugs that just kicked in. Goodnight.

My mother is here. End of the screaming story.

That's all. I'm frustrated. It sucks. At least the pain pills work, but it means my mother has to be with me all the time because I can't drive. Tomorrow is the FIFTH day in a row that I have to go to the doctor. I'm thinking about somethings too much and I hate that. Good thing the pain killers leave me with little ability to think. Yay.

I am right now calling the ob/gyn clinic because I am beside myself and don't know what to do. This is ridiculous. Yesterday they told me nothing helpful and sent me home to lay on the couch in terrible pain until THURSDAY? I can't do this. I'm so desperate to have someone help me. I'm in so much pain. I hate being alone when something is wrong. I don't know what to do. My biggest fear is being alone, in pain or sick, and no doctor will help me. And they won't help me. I have a fever - I never run a fever. There is something terribly wrong with me and no one will help me. I just want to SCREAM.

This is me complaining because I won't complain anywhere but here. I don't want to lay on the couch in pain anymore. I am tired of rotting my brain with stupid television (yes, I've already watched everything worth watching... twice. Honestly, I've seen nearly every episode of Law and Order. That is how much television I watch). When I read my book I fall asleep. I'm tired of sleeping all day, eating dinner, maybe doing something in the evening - but usually waiting by myself in front of the television until it is 9pm so I can go to bed. I want to dance again. Well, I'm still dancing - I just dance until I nearly pass out from pain. GOOD STRATEGY, Carla. Well, fuck you, voice of reason in my head. I want to sort the rest of my stuff so my house is organized. FUCK I'm so close - and I can't finish it. I want this to go away. It's not something that was in my CF contract. I got it out and looked. Pelvis pain is NOT in there. Dying from lung dis...

I called it a "scapula" - it's a "speculum." Scapula is your shoulder blade. Although THAT would make for an interesting pelvic exam. Thanks, Dad.

I called my OB/GYN at 8 this morning to see if I could get the elusive "emergency spot." I couldn't. "Today is the Doctor's first day back, and she is unbelievably busy." I'm in an unbelievable amount of pain. Who trumps who. She trumps me. I got to see the nurse practitioner. She told me that my cervix could look normal. It just happens to be sensitive and so I bleed a lot. Apparently, she touched it and it started to ooze blood. Yes, ooze blood were her words. So basically she told me I'm fine. I said, "What about this unGodly pain I'm in?" Which made her stop and think. Poke poke poke. Scream scream scream. She says, Well you could have cysts on your ovaries - they can be painful. Or you could have endometriosis. The doctor would need to do surgery to determine that. So my options are surgery or live with the pain? What the fuck? Are there or aren't there endometrial cells on my cervix? I'm guessing bumping ...

This is me with a PICC - It was spring 2007 sometime because that was the last time I had a PICC. I now have my port, which is so much better because after a PICC you get lovely holes like this: And then they get infected and you worry your arm is going to fall off or you are going to die from sepsis. Makes a quick trip through the ER though. If you look closely, you can see where the biopatch was (allergic to that now... you can see the edges were irritated), and you can see the mess the tegederm makes of my skin. And after today, these are my FOND memories. I am convinced that in my past life I was a TOTAL bitch, because karma doesn't bite this hard unless it's for a reason. My favorite part of today was that the SPECULUM BIT ME. That's right. I got bit by a speculum. And it has left a nice painful tear in my skin. Here's to hoping it heals quickly. In my last post I mentioned that I was going to urgent care to rule out a bladder/kidney infection. Well, they...

This is alcohol on fire. Yay. This is how I feel. No, maybe I feel worse than this. At any rate, if they told me tomorrow I have to go into the hospital, I wouldn't fight them. I was able to go to UWMBDA tonight. I was able to do my council duties that I have neglected the past week. Now I just have to enter all the members into a database - which should be easy. I danced a little, but not too much since I am running a fever. And the pain. OW the pain. Tomorrow I have to go to urgent care to make sure I don't have a bladder/kidney infection. If they tell me I'm not dying, I'll be at dance practice. If they tell me I'm dying, I'll probably still be at dance practice. No time like the present!

This one time, I broke open a coconut.

Because you never know when you'll need one. Soooo today. I laid on the couch, got yelled at by my mother, laid on the couch, got yelled at by my mother, cried my eyes out, talked to my dad, and was rescued by a wonderful friend. We went to dinner and had a great time. Then I took her and a couple other friends to a movie I had been wanting to see. Unfortunately, I didn't know how much graphic violence was in the movie - my poor friend hated the movie. I hope she had an okay time anyways. I haven't had chest PT or a vest or a saline today. I am bad. Maybe I am purposely hurting myself just a little to get back at my mother who basically yelled at me because I exist. I'm still in loads of pain - but doing stuff with friends helps me forget how much pain I'm in. My appointment with the gyno is next Thursday. That's a long time for me to wait like this. Boo. I don't know what this weekend is going to be like. I can't decide if dancing is a good o...

Yes, it's another photo of a flower. Confession #1: I haven't done my saline in a couple days, but I am doing it right now. This blog keeps me honest with my goals because I can't lie to myself. I have kept up with all the other things - including rinsing my nose semi-regularly, writing in my journal, pouring meds, and brushing my teeth. I need to work on checking my blood sugar more often. I'm good at insulin, bad at checking my sugar. Confession #2: My poor jade plant - it's leaves are falling off. I believe I haven't watered it enough. So sad. I hope it can not die on me. It was expensive. And I love Jade. Confession #3: I'm done. This is the end. I'm going to figure things out and then I will be all better. This is my rant. I can handle the CF, the sinus problems, the diabetes, the PTSD, the restless legs syndrome, the depression, the anxiety, and whatever else I've forgotten to list. Those I'm cool with. I can't handle the ...

Look at cute photos of my dog. And now I will talk about today. Today was my first intermediate dance class with the new dance team - and it's pretty much my favorite thing ever. It was a three hour class, and while I only made it through 2.5 hours and discovered I have no core strength, it was WONDERFUL. We covered the ENTIRE basics of waltz in ONE HOUR - not one semester - ONE HOUR. This is definitely my speed. I didn't feel out of place or that I'll have to work hard to keep up - it's just so unbelievably beyond perfect for me. The rest of the day I spent sleeping. I think dancing last night wore me out... and I have plans tomorrow evening which should be low-key, and Thursday's plans are low-key, and Friday is optional and weather related. Saturday is less optional and dancing and Sunday is lots of dancing. And then I will start all over on Monday. Either this team will keep my lungs in shape and keep me healthy, or it will kill me :-) We'll find out...

Dance. Mother. Sad. No go funeral. Other. Why not me? Crap. No other words. So Busy. Brain Died. Happyish. Sleep. And Allergic to parents and their house. Yep. That's basically what I wanted to say... minus a few sentences.

The clock from the pediatric pulmonary clinic. They had one in each room. I'm pretty sure this was my last time in pediatric clinic. Dr. Green, my pediatric pulmonologist had been my doctor for 17 years - and they wonder why I have troubles dealing with the adult docs. It's because it's not what I'm used to.

This photo was taken in Nurnberg, Germany. It's how I feel now. I don't know what to do about this week. It's going to be crazy hectic, and I won't get everything I want to done. I guess all I can do is jump in and try to swim. The couch I made! Kyra and I did a WONDERFUL job - this thing is gorgeous and comfortable! It makes me smile. And this week, hopefully I'll be able to get over to Chris and Kyra's to help Kyra hang artwork :-) Black and white makes dancing look even better. These are the two best dancers I know, and I am privileged to call them my friends.

I got sick. I drove up to my parents' place and immediately very nearly keeled over. I was napping and sleeping in the front bedroom which has a TemperPedic mattress - and oops, I'm allergic to it. It very nearly killed me, and I was pissed. I'm feeling better now, and also have lots to catch up on and lots to do to get ready for this week. A friend of mine who has CF passed this weekend, so I have a funeral to go to this week. It's going to be a busy and exhausting week. I'm not ready to comment on anything yet.

I had a meeting at the CF Foundation, and they offered me a great volunteer position. More about that later. Went to UWMBDA kick off (the social ballroom club on campus) - and like always, had a great time! Except for one thing - that part where I nearly had a nervous breakdown and then was jumping up and down and screaming, but more about that later. Quote of the evening, "Nothing goes better with sleaze than sleaze." Said by a pretty creepy guy himself. Oh the joys of being a good person. I'm exhausted and plan on writing something worthwhile tomorrow at my parents' place. So The END. P.S. UWMBDA owes Sam and me a BIG thank you for protecting the young females that were there tonight. You're welcome. It's hard being a good person. P.P.S. Thank you to all my friends who were there tonight. Thank you to everyone who said I looked good health-wise, because this is the best I've felt in years. I felt this energetic when I first came to college - but ...

This is my dog, Snowball. He's actually my parents' dog, but I was ten when we got him, so he's partly mine too. He is possibly the funniest and smartest dog ever. It's sad that he's getting old, but he still loves us as much as ever. I took this photo in Rotenburg, Germany. I love taking photos of flowers.

No, seriously, I made a couch. Photos and explanation to come on Friday - maybe Saturday.

These masks I bought in Venice. I fell in love with all the Carnival masks and knew I had to have a big one to hang over my fireplace for the redesign of my place. This was the entire inspiration for my room - it gave me a color palate - red being my accent color. The large frame came from my parents basement, the small frames from St. Vinnie's. I colored the cloth on the large frame red to match better, and hung them. My original plan was to hang other photos from our trip around the masks, but that was before they were framed. Now I think that would be too busy. And just as I was typing this I got the inspiration to frame photos and hang them between the red dvd holders that are behind the TV... (Remember to click on the photo if you want to see it larger)

According to the CF Foundation, the Median Survival Age for a person with cystic fibrosis is 37. I would like to point out how skewed this number is and how it in no way applies to me. This is not to be cynical, rather to show why I feel so lucky most of the time. I feel lucky because I have no idea why I'm still alive and still doing pretty good. The Median Survival Age is just that - a median. In case you don't remember your math, the median is a middle number - not an average. The middle number when referring to survival age means 50% die BEFORE 37 and 50% die AFTER 37. So there's that flaw with using the Median. It means there's a 50/50 chance of surviving past 37 - sort of. It's supposed to give parents a number. If your child is born today they have a 50/50 chance of surviving to 37. I don't know what it means for me. You need to take into account who is grouped into this statistic. The CF Foundation takes ALL CF patients in this number - the p...

I'm doing pretty good. The dishes need doing, but maybe tomorrow I'll find the energy for that. Today I didn't have it. Today I rested and watched Jon and Kate Plus Eight. I cried during the one where they revisit the NICU. I'm a sucker for little kids. I also watched about eight million episodes of Law & Order. I'm doing my saline right now :-) Yay for me! I'm still on the Wagon! I think today is ONE WEEK. Woah. I've kept a goal for more than a week.

Some may say that I'm barely making it - but I say I'm doing a pretty good job. Today I'd like to discuss CF. I was reading an article and came upon this sentence: "It's also extraordinarily deadly. While modern medical advances have allowed many patients to live into their 20s and 30s, about 60% of kids who have it don't live to see their 18th birthday." I am too exhausted to get into this now, but tomorrow I plan on revisiting the topic: The real truth behind the CF Foundation's "Median Survival Age" And maybe I'll talk about my Inconsiderate Brother... Well, he was inconsiderate today.

So I've been taking care of myself. Good for me :-). I'm also tackling the crazy organization problems in my house - great for me! It's soon going to be organized and pristine. Weee. My problem now is I'm obsessed with things that have gone wrong - mainly relationships. I can't stop thinking about them. I can't stop thinking about how much it hurt. Solutions to this problem would be wonderful.