Learning To Live

Yesterday I was on my way home from clinic in Milwaukee.  I was feeling sad about my lung functions and something that happened to me on Thursday.  Thursday I went to get my blood drawn, and at the lab there was a woman who looked so much like my friend Lauren it was scary.  Except for the fact that she was pregnant (and Lauren and I used to compare our distended abdomens to see who looked more pregnant), I could have sworn it was Lauren.  I almost said something to the woman, except Lauren passed away in 2011 and "Hey! You look exactly like my friend, but she's dead." is not the most tactful thing to say in public. I was sure that seeing Lauren in that woman was a sign - a sign my lung functions would be up and I would be back where I want to be.  But that didn't happen, and I was sad.  I was sad for myself and sad because I miss Lauren.  I was frustrated that she hadn't come through for me and given me the boost I thought I needed. And then my iPo...

Eva, also known as "65_RedRoses," is dying. I read her blog. I follow what is happening with the documentary they made about her lung transplant (and I can't wait until I can see it. When will it be released to the States?!?!). Part of me wants to BE Eva. I want to be successful at spreading awareness about Cystic Fibrosis. I want to be gorgeous even when I'm sick. I want to have the words to express how I feel. I write in my personal journal every night, but I feel like my blog should be much more. Updates on how I'm doing. Feelings about life. Wisdom. Hope. Love. I want to live my life with grace and love like Eva has. I want to be as much fun as Eva, but lots of times, I am grumpy. And I'm sarcastic. I think my sarcasm often comes off as negativity, but I don't mean it that way. In my brain, my thoughts about my life and my disease(s) are hopeful. Tonight, I would like to quote some of my favorite things that Eva has written on her blog...

It is way too late for me to be up. This probably won't be cohesive, but here goes! Today I am argumentative. I'm pissed. I'm pissed at cystic fibrosis. I'm pissed that it has taken friends of mine away from me. Today I desperately pounded out an email to my dad: "I feel sad because nothing fits right anymore. I can't believe I have just one pair of jeans. And then I have some yoga pants, but they are more "I wear these around the house because they make me feel like I'm dressed." I just want to go spend money. Arg. I have the dreaded "shopping makes me happy" thing Mom has. I learned that Craig from Cedarburg died this past week. He was a senior when I was a freshman and he had CF. So I'm freaking out. And a blogger I follow, also named Lauren, died this week. She was FINE in June, and now she's gone. She was blogging about how she'd gotten her FEV1 up from 47% to 50 something %, and that's about where I f...

Tonight my dad and I watched "The Bucket List." Jack Nicholson. Morgan Freeman. Two of my favorite actors ever in a movie with a fabulous message. Basically, don't wait until you're dying to do what you want to do. Sort of. Or maybe your impending death should be the cause to make you not take things for granted. Either way, I've lived like this for a long time - my mother doesn't really like it or understand it, but she'll get over it. I try to live my life as if today were my last day, and I try to live my life as if I have all the days I could ever want left. I try not to let anyone tell me what to do. I try to do the best I can. I try to be helpful and kind. I try to be happy. I try to make others happy. After the movie tonight I was inspired to make my own bucket list - with some of the same things from the movie, most of them different. There is an additional feature on the DVD on how to write your own Bucket List. Turns out, the guy also...

I am reaching for something that isn't there. I'm grasping at straws. Climbing a never ending stairway. "Rayando el Sol." "Rayando el Sol" is the title of my favorite song by Maná - my favorite of all the Hispanic/Latin music, and right up there in my favorite bands of all time. If I didn't love so many songs, I could say with more certainty that "Rayando el Sol" is my favorite song. Translated it means something like reaching or scratching for the sun. I've been meaning to write this post for a long time, but I haven't had the words. I still don't know if I have the right words, but I'm going to try. So grab yourself a candybar, sit back, and get comfy because this is going to be a long post. It's one of those posts that means a lot to me - whether or not anyone ever reads it. I'm not going to give up. I'm not going to stop hoping that someday people who don't have CF will understand me. I'm not goi...

I haven't written in my journal in the last several days, so I am blogging out of turn, but I will write in my journal after I finish writing this. But right now, this is more important. I love Ben Folds. Recently his music has been popping up in my life - and I always pay attention to the music popping up in my life. A friend of mine recently met Ben Folds and recorded a song for his upcoming album. While making dinner for the benefit we listened to "Rockin' the Suburbs," and I heard an A Capella group perform "The Luckiest" last weekend. "The Luckiest" has been one of my favorite songs for a long time. I often write about how lucky I am - and I truly am lucky. Today I had a hard time feeling lucky until the end of the day. I woke up this morning and decided to check my voicemail. On my land line I usually let my messages build until there are about 30, and then I go through and delete them. I knew I only had one or two, but strangely I d...

There is a Montgomery Gentry song called, "Speed." The lyrics describe how I feel today. It's how I've felt for most of this home IV experience. It seriously makes me wonder whether home IVs are better, or if going into the hospital for 2 weeks is better. Why does time go faster in the hospital? Anyways, the lyrics I'm thinking of go like this: "I'm tired of spinning my wheels I need to find a place where my heart can go to heal I need to get there pretty quick Hey, mister, what you got out on that lot You can sell me in a pinch Maybe one of them supped-up muscle cars The kind that makes you think you're stronger than you are Color don't matter, no, I don't need leather seats All that really concerns me is Speed How fast will it go Can it get me over her quickly, zero to sixty Can it outrun her memory Yeah, what I really need is an open road And a whole lot of speed" I've been so frustrated during this round of IVs I feel like I n...

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...

The last post was titled "On Not Dating" and I was contemplating the recent ending of casual dating with Boy (read that first). Now I have realized some other things and this came out of that... So, I've now decided that I will never date ever (because seriously, how could I do that to another human being??? How could I expect another person to want THIS??? To want me and all that comes with me???) So here's the rest of the conversation with my friend - the reason I came to the conclusion that I can't date. I just can't. ME: having CF - I really don't get what would be so awful about being in a relationship with me??? Honestly, please talk about this with me because I'm about to lose my shit all together here and I just can't handle crying one more time today. [editor's note: I did lose my shit... you'll read why] Him: ok well look you have a big disease and it dominates your life it dominates every part of your existence [editor's n...

Saturday night was CRAZY - it's chronicled better in THIS ALBUM. Sunday was Lazy. Today I slept all day. Yay me. But that's not why I'm writing. I'm dating again. Someday I'll tell the crazy story of how this happened. But not tonight. Tonight is about this conversation: Him: So, we can date casually. I'm afraid of getting hurt. Me: Okay, I know. Him: Aren't you afraid of getting hurt? Me: No. Him: ??? Me: With all the other stuff I have to look ahead to, getting my heart broken is nothing. And it's so true. I'm not afraid to jump into a relationship because getting my heart broken is nothing compared to getting sicker and losing the ability to do things. The thought of needing oxygen again scares me. Transplant scares me. Even getting better scares me - if that were to happen. But getting my heart broken? Nah. I can put my heart back together - I've done it several times before, so it's all cool. Plus, I feel that being happy is s...

That are hard to deal with. I learned a friend of mine, who had CF passed away yesterday. He was 31 and decided a couple weeks ago he didn't want to fight anymore. That's only 10 years older than me. I really don't know what to say, except at least he isn't suffering anymore. The friend of mine who called to tell me, informed me that she tried to commit suicide on St. Patrick's day and is now in a partial hospitalization grief counseling program - and all I can say is at least she's feeling better. For her, I hope she deals with not only her grief better, but her outlook on life. There's only so much I can do to help someone see all the things they can still do and how wonderful life can be. This will be my fourth funeral since September (I knew a fifth person who died, but couldn't make it to my hometown for the service), and each one reminds me how lucky I am to still be able to do the things I love and to be with the people I love. Life is preci...