Saturday, February 28, 2009

Friends Til The End

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 the things that scare you, the things you think people will judge you for usually has the opposite response. It explains to people more about who you are. People love honesty and the ability for a person to open up and share.

I have had a big black cloud that I don't like to talk about - well, several of them. But I do it. Sometimes I just lay everything on the line (usually in my blog or an email), and then people get it. Sort of. As best they can.

I wish I could spend all my time having deep meaningful conversations with people. And knitting. I can knit and converse deeply at the same time.

So if you're one of those great friends I want to know better, don't be afraid to email me or call me or set up a time to chat. I don't remember the last time I judged a person for having a problem. I don't know if I ever have.

I believe that everyone has trials and issues in life - and we all can learn and grow from the mistakes we've made and the bad things we have to deal with. And the best way to figure things out is to talk about them.

So let's get talking. Let's start learning. Let's become a closer group of friends - our own family, if you will. A family of unconditional support and love - because I know we can do it. We're just that type of folksy.

Wednesday, February 25, 2009

Fleeing: A Rant and An Apology

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 was driving on the freeway and started bawling. Good place to cry your eyes out. :-\.

I feel so empty.

I'm sorry. There are so many things I should be doing. I should be fundraising, and I should be working on things for UWMBDA, and I'm not. I have things to do for the CF Support group, and they have a meeting tomorrow night and I don't want to go. So I'm not going. And tomorrow night is games night but I'm sad so I won't go. And Saturday is UWMBDA and it's my favorite lesson - the Salsa en Rueda, and I'm not going because I'm afraid I won't have the energy. I'm terrified that people are going to notice that I'm not my usual self. I'm terrified that I don't have enough lung power to do the things I want to do, so I don't even try. I sleep instead.

I hate this. This is all because I had to go off my antidepressant because it interacted with my IV antibiotic. I hate feeling like this.

All I ever want is to feel better, and it always seems like no matter what I do, I always feel sick. Right now I'm mentally sick. I think this is even worse than physically sick because right now I have all the physical energy I get, but I can't use it because I'm so mentally screwed up.

So I'm sorry, but I have to flee. I'm going to go stay with my parents for a little while and my brother will bring me back here around Sunday. Hopefully I will be feeling better because I can't stand this any longer.

Friday, February 20, 2009

The Thinks I Think

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 teacher telling a student that she knew something was wrong because my brother wasn't participating in class anymore. That happened the week I almost died because of a botched surgery. I wish I could play for you the frantic call my mother made to my father because she thought I was dying. She thought that was the last day she would spend with me - and I was fading in and out of consciousness.

I wish you knew about all the conversations I have had with my Sarah Lynn about my death, or the pain she goes through being my best friend. I wish you could hear all the mean things people have said to her about me and about how soon my life is going to end.

I wish I could make a brutally honest montage - one that would make you feel the pain this disease causes. The pain I felt every time I have lost a friend to CF. Every time I put on a nice black outfit and go to a memorial service for someone who died before she or he turned 30. I wish you could know what it feels like to know that the odds aren't in your favor and because of an economic downturn the foundation you count on is cutting research dollars. You hope and pray for research, and then they have to cut the funding. They may as well cut off a little piece of the hearts that care for someone with CF. ...unless we do something about it.

And that's why I'm fighting so hard this year to raise more than four times the amount of money I raised for the CF Foundation last year. I want that research.

View this montage created at One True Media
Emily - Our Sunshine


I want Emily to live a long and happy life. Here's to Emily.

Thursday, February 19, 2009

Brought To You By The Letter Crazy

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 relationships have been dim. I should think on this.

Life is way too short to not just jump in and stop playing games. If you like each other, please just date already and put the rest of us out of our misery. I am tired of asking if two people are dating and getting "sort of" as an answer.

What the hell? There is no "sort of" dating. It's a date, or it's not. You're together, or you're not.


Thank you. This rant is brought to you by the letter Crazy.

Wednesday, February 18, 2009

GREAT STRIDES!

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!!!

Tuesday, February 17, 2009

My Village

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 where I am. Well, at least all the photos I can find. And hopefully I will be able to reflect on some things...

I don't know what song to use. Suggestions, please!

Lost Day

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.

A Day of News

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.

Thursday, February 12, 2009

My Daily

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!

Tuesday, February 10, 2009

Scary

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.

Monday, February 9, 2009

This one time, on Live Journal

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, The 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 human heart, is that heart a baby?"

Today I listened to a podcast for the University of Melbourne in Australia. It was 15 minutes talking about how they are using stem cells to try and cure cystic fibrosis. In case you live under a rock like the people who think a stem cell is a baby, you should know that I have CF. It's killing me softly with it's song. I knew that eventually someone would come up with this idea of using stem cells to grow healthy lungs or fix the broken genes and go at it! And kudos to the University of Melbourne. Would anyone like to go there with me and investigate this wonderful research?

Hats off to those researchers who are still working with stem cells.
Hats off to President Obama to allowing more stem cell research so that we can catch up to where the rest of the world is in research.
No hats off to those of you who think stem cell research is killing babies. If this is really true, then I guess all I can say is "Hats off to killing babies!" We all know how much I love children. And we all know that pro-choice or pro-stem cells is not the same as pro-killing babies. So shut up and let me be happy about my Australian Stem Cell Research.

I'd be much happier if Bush had never been in office and allowed to limit stem cell research in the United States, but I'm happy that the research is being done SOMEWHERE.

Yay research! :-)

Saturday Night is Alright

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!

Heart.

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.

Wednesday, February 4, 2009

Hard Work

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.

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