Learning To Live

I have many friends. I love my friends dearly - and they definitely take good care of me - but today the issue came up that I may not really know who most of my friends are. I don't think I know many of them very well. I got an email of encouragement from a wonderful friend - a person I consider a very close friend, and I thought I knew her pretty well, but the things she said in her email came close to shocking me out of my socks. It got me thinking about how well I know each of my very close friends. The friends who are more like siblings to me than friends - Sarah Lynn, Chris and Kyra, Callie, Emily, and a few others - those people I know. Those people I would trust with my life without even blinking. But the friends I hang out with several times a week - I don't think I know very many of them as well as I think I do. I hope that I can learn more about them and maybe we'll all open up and not be afraid to talk about certain things. I have learned that talking about t...

First, I lost my "Women for Hillary" button. This makes me terribly sad - as does the speed at which my computer is typing. I'm typing about a sentence faster than my computer can handle and it's pissing me off. But back to the button. Maybe it's time that I give up on my Hillary button - but still, I love that button. I went to MST3K night tonight, after having slept all day. Literally, I woke up at 7:30am, ate breakfast, wandered around my house aimlessly, and then went back to sleep. I woke up at 1pm, wandered around, ate lunch, wandered around, went back to sleep. I woke up at 6pm, had dinner and then went to hang out with people. I really didn't find hanging out with people that enjoyable. It helped some, but then I realized how much fun I wasn't having. There was back rub exchanging going on and I just sat there. I didn't say anything, I didn't participate, I just sat there knitting. And then I found myself sobbing on the way home. ...

I think lots of thinks. And sometimes my thinks get all kinked and then it's hard for me to think. This is one of my favorite montages ever. It was made by the mother of a little girl with CF. The mom is an amazing person. She and I email regularly and I love the advice and hope she gives me, and I only hope that in seeing me still alive at 22 it gives her some hope for her little girl. I may be sick, but the road for Emily hopefully will have fewer bumps. More treatments to lengthen the life of a sweet little girl. I think that if you are conflicted at all about the Great Strides walk or the need to raise money for Cystic Fibrosis Research, just watch this montage and you will see the pain this disease causes. I wish I could do an entire montage to show you how much pain my parents have been through. I wish I had photos of them when I have been in the hospital, when they are arguing with doctors trying to get me the best care. I wish I had a recording of my favorite teache...

Good evening Ladies and Gentlemen. Welcome to our show. In this evening's production of A Rant, the part of The Crazy Woman will be played by moi, your host. The rank of the day is on dating. I usually rant about my lack of it, but tonight I really don't care so much about that. I really am irked by the abundance of dating-like-things going on around me, and yet no one wants to call it dating. There is no middle ground. Either you are dating, or you are not dating. It's like when recently one of my friends said she is "sort of sleeping with this guy." I asked her if she is or if she isn't, because this is a pretty black or white area. Either you have fucked him or you haven't. And if you don't know you have a whole different set of problems. I think dating is like that. More of an on-off light switch than a dimmer. You can't be "dimly dating" - or maybe that's all that I ever do. Maybe that's my problem. All my relatio...

Tonight I am working on things for the GREAT STRIDES walk in May. My team has multiplied and grown so much in the last year it is unbelievable!!! Last year we raised just over $6,000... and THIS year, our goal is $25,000 - and we're right on track to meet that goal!!! If you would like to help us reach our goal you can donate HERE . Thanks, and soon you'll be seeing some things I've been working on for HOURS!!!

Tonight I am sentimental. I am missing a great number of people who have influenced my life. Some are gone and are now angels, and some just live too far away, and some I saw a couple days ago, but I want them to know how much they mean to me. I found this photo, and it made me miss college. It made me miss the days when I lived in the dorm. It made me miss all that energy I used to have. And this photo came from a CF Mom. You have no idea how much I miss my pediatric doctor. This is a photo of a real doctor. A doctor who loves what he does and who loves his patients. I miss that. It takes a village to raise a child, but it also takes a village to help me get through this fight. And tonight, I feel like part of my village is missing. I know my angels are with me, but I wish sometimes I could give them a giant hug. Tonight I am making my montage for 2009 Great Strides. It will be called, "My Village." I am including photos of all the people who have helped me get wher...

I planned on posting a lot of things today. I did shower, get dressed, do a few productive things today, but I didn't post as much as I wanted to. Now my sinuses are killing me, I'm tired, and my mother is driving me nuts (the television... I don't want to argue over the television again. "I bought this television and then when I'm here I can't watch what I want?" Shut up Mom. I'm doing IVs, and you're going to make me and my pole move to my bedroom because you can't live without HGTV? I want to scream. If I have to watch one more fucking show on HGTV I might just die). I no longer feel like posting anything interesting.

Everyday I get a Google Alert email that contains every news article with "Cystic Fibrosis" in it, and usually has some blogs with CF in it too. I usually skim the email and then delete or just delete it without reading it. Sometimes I browse the blogs to see if mine is in there because once it was and my vanity usually wins. Most of the time it is just about people who have died from CF, and I want the research articles. I was just about to delete my Google Alert email today when I saw a gaggle of entries about gene therapy. Usually these articles are also a bunch of crap I don't want to read, or they are old news, but today I clicked. And I found this. God Bless the UK and the BBC. I knew there was a reason I liked those Brits. Here's to hoping that they can bring the research here without too much trouble.

Today I did many things. A few of them: I wrote up stuff about this years Great Strides (I'm being featured in this year's (is it yearly?) Footnotes from the WI CF Foundation). I sent another reminder email to people to JOIN MY TEAM. I bought 40 plastic jars off of Amazon. I saw my Luca :-) That kid could make me smile even on the worst of days. And his parents aren't half bad either. I fell in love with the electric company - I went to pay my bill today and found that they OWE ME MONEY! This is like a 2nd Christmas - and totally makes my purchase of a $50 sweater okay - because I want to take it to CA and I love it too much to do anything else about it ;-) Happy Wednesday, well shoot. It's officially Thursday. Either way, I hope your days are great!

Sometimes, my horoscope is even scarier than CF clinic in Madison. Today my horoscope was: "The truth is within. You are realizing that the experts and the gurus aren't any more intelligent than you are, and you may be more "wise" in the ways that matter. Trust what you know to be true, deep down in your heart. A thimble of common sense today is worth a ton of over-educated claptrap." Hahahahahahahahahahahahahahahahaha Thanks, horoscope. You made my entire day of fighting with the CF clinic because they are terrible a little less painful, because even YOU know that I'm more "wise" than they are. I'm going to trust my heart and write some very poignant letters.

Once I got into a huge fight with a friend over a LiveJournal post I made about stem cells. This was right at the time that Bush was fighting to get them all banned, and I was fighting to stop his attempts. I had written several letters to the editor and was published in my hometown's paper, T he Milwaukee Journal Sentinel, The Wisconsin State Journal , The Capital Times , and The Chicago Tribune . Needless to say, I was a pretty happy camper about my fighting that summer. That summer my friend one day insisted that we have coffee. She went on to tell me that she was deeply disturbed that I support stem cell research because it is killing babies. She also interrogated me about my religious beliefs and afterward I wrote a nice piece called, "If Jesus Sent me A Polaroid." And it has all my pro-killing babies agenda in it. Thanks for all that wonderful inspiration. All of this foolery caused me to ask myself and others, "If you force a stem cell to grow into a hu...

I'm fighting again. This time, it's again to get the CF stuff in Madison straightened out, and possibly I will take on fighting for a support group at Froedert. Because my new love is at Froedert, and it deserves to support a CF support group. Watch out CF, here I come!

We all have heart. I suggest you follow yours. That's what I did when I made the decision to make an appointment with a doctor at a different CF clinic. In my heart I felt that the way things are going at my current CF clinic isn't a good direction and that I need a new doctor or at least a new... well, something. I will write later about the doctor and my expectations, hopes, and how all of them were met or exceeded. I'm hoping to update more than once a week and actually talk about the things I want to say. Today I went to the adult CF clinic in Milwaukee, and I can do is gush about it. I have a huge crush on the CF clinic at Froedert, and I may end up having an affair with that clinic. I mean, how can you resist a clinic that has free oxygen in the waiting room? And not just free oxygen, but free muffins too. This may be the beginning of me following my heart no matter what other people say. Heart. I have one.

Today I spent the ENTIRE day trying to get rid of a migraine. I woke up at 9. Watched TV and ate breakfast while waiting for migraine med to kick in. Nurse came about 10:30. I went to sleep at 11 to try and get rid of migraine. Woke up at 3pm, migraine still there. I took another migraine pill and Tylenol, and went back to sleep hoping this time I would wake up pain free. I did! I woke up pain free at 6:30pm. Watched TV and ate dinner. And now it is 9pm and I'm so tired I want to go to bed. Getting rid of a migraine is hard work. All that sleeping sure is tiring.