Learning To Live

 These are the beautiful words Kyra wrote about one of my recent posts.  After her comment, I will write a little about what she said.   Kyra S. has left a new comment on your post " Mental Me ": Someone once said "Just stop feeling that way!" Yeah. Right. I'll get right on that. I know it is hard because of your anxiety to just let it be unresolved (this is from a card carrying member of the anxiety club) but realize that you can. And every time your brain comes back to that "Oh no, I can't take it place" just reply calmly "Yes I can, cause I've nearly died and if I can survive that I can survive this." And just pretend you believe it. Your friend may never be willing or able to understand mental illness. Its hard for people sometimes when on the surface someone seems so healthy. Realize that your brain is fundamentally different than someone without PTSD. (And if anyone contradicts you, send them to the head...

I feel like a princess. I'm in Seattle. I am staying with friends for 10 days (probably way past my welcome! Didn't someone once say 'fish and house guests start to stink after three days'?), and there are other friends staying here too for various lengths of time. At most there will be seven people here in this two bedroom, one bathroom home. Thank goodness for the basement! So I feel like a princess - because I am staying in the 2nd bedroom the whole time. My hosts are worried there might be some creepy mold hidden in the basement, so they won't let me stay there. I'm very happy. My hostess, E, put enough blankets on the bed to suffocate me, just so I'd be warm enough. And my hosts - two of the best friends I have. And the four other people joining us? Also amazing friends. These are friends willing to do my chest PT and push me in a wheelchair around San Francisco. Have you heard about the hills there? Because they are huge. And Seattle? Also big hills. A...

I'm officially 100% IV Free for One Year.  To celebrate, my parents and I threw a party on Saturday.  It was wonderful - almost all my favorite people were there, and everyone made it so special.  It was better than any birthday party I've ever had because it had so much more meaning to me.  It was like giving me my life back.  A friend of mine told me tonight, " You really know how to live, girl...".  And THAT made my night because that is what I want to be known for and eventually remembered for - knowing how to live.  Also, knowing how to love. This post is dedicated to everyone who helped me get here - ONE YEAR IV FREE.   To Mom and Dad because they do everything for me.  They always have.  They fight just as hard as I do, if not harder.  I love them with all my heart.  My one wish has always been for them to worry less, and hopefully now they can worry a little less.   To My Brother for being my...

The 4th of July weekend was jam-packed for me.  I had such a great time with everyone and doing so much stuff!  It was party, party, party and hanging out with people I hadn't seen in a long time.  It was fabulous! I have finally come up with a term I really like for the really special people in my life - the people who are like brothers and sisters to me, but who aren't technically blood-related.  From now on they are my Bonus Siblings.  These are people I've grown up with, friends since I was very young, and people I'm so close to we may as well be related.  I'm so lucky to have these wonderful people in my life.  Here's to my Bonus Siblings - Emily, Margaret, Sarah, Chris, Kyra, and Chase.  I love you guys!!!

I'm sick. Most of the time I don't look sick, but I am. And often, I need help. I have goals and dreams and ideas and I don't have the energy to accomplish 1/3 of the things I want to do in a day. I'm overwhelmingly thankful about my lungs. My lungs are doing pretty good. More than pretty good - great! It's been 7 months since I got sick enough to need IV antibiotics. I can't stress enough how big a miracle this is - I was doing IVs every 2.5 to 3 months. But now that my lungs are okay I'm frustrated because I still don't have the energy to get everything done. I have MORE energy, but I still need so much sleep and rest. And I think and feel that many people are confused as to why I'm still a mess if my lungs are okay. Some of it is my sinuses, but I'm working on getting them cleaned out so I don't have to have surgery this year, *cross your fingers.* Most of it, is my fibromyalgia. For whatever reason, it's kicking my butt....

Dear Friends, I usually have to deal with a lot of people not understanding my cystic fibrosis. That I am used to. I also am very good at explaining it and my daily life so they sort of can pretend they understand what my life is like. I don't often have to explain my mental health issues, but today I do. I know lately I haven’t been myself. I’m assuming you all have noticed and this is my attempt to explain that. This is my email to all of you and I’m also going to post parts of this on The Blog. So mainly you’ve probably noticed or been informed of my problems with a female friend. I’ve been unreasonable and heinous. I am the first to admit that. Only in the last couple weeks have I realized WHY I have such problems and why I’m unable to control myself. Said female friend tends to be a little controlling, and sometimes reminds me of my mother- and with what I’m currently going through she is a PTSD trigger for me. I will explain more of what that means later. For t...

Quite a while ago a friend of mine sent me an online article about Peaches and Coconuts. In this article it talked about two different types of people, Peaches and Coconuts. Here is a description of the coconuts: Coconut Reserved, needs time to warm up with strangers Private and public life are strictly separated Social distance determined by profession, social role and status (Sie) Close, very intimate sharing of experiences with friends I think I can be a crazy hybrid of peach and coconut, but for the most part my friends and I are a bunch of coconuts. Although we keep our secrets to ourselves, if someone finds out, we ALL find out. We sure are a gossipy bunch of coconuts. In the end, we're all a crazy bunch of coconuts and I like it.

I got home tonight and my brother is gone. I know we both left around the same time this morning, but when I got home way past midnight I sort of forgot he wouldn't be here. And I'm scared. This blog has turned into me facing my fears lately, or maybe even me not facing them, but complaining about them instead. I have spent the last week with my brother. Almost every minute was spent with him. I would consider moving wherever my brother ends up because he is that important to me - and we have a much better relationship when we are together in person. When Darin and I are apart and I try and call him he seems annoyed. We don't really email or talk online like I would like to - I want to know everything like I know everything when we're together. This past week has been so much fun and I've gotten so much done, it's really how I want my life to be. Basically, I want to be like Will and Grace. My brother is very good at compartmentalizing things and not get...

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...

This is one of those nights that I am feeling very thankful. First, I am very thankful to have somewhere warm to sleep on this incredibly cold night. I am thankful for family who will take care of me. I am thankful for friends who will distract me when family drives me nuts. I have the most amazing friends on the planet. I can't think of anything I lack in terms of friends. My friends are diverse and wonderful. I love them with all my heart. I am thankful for having so many people who care about me. Every year when I raise money for Great Strides it amazes me how generous people are - and how much more generous they are the next year. It's because of ya'll that I can raise money for the Cystic Fibrosis Foundation and hope to see a cure in my lifetime - even if that cure is too late for me. I am thankful for my internet family. It might be a little internet family, but you people are real - and most of you have CF, and that means you know exactly what I'm going th...

I am inspired by songs. I always have been. "You Can't Always Get What You Want" by The Rolling Stones has always played a big part in my life. It's a very important song to my family, especially to me and my father. I think we are the sentimental ones. When I was a senior in high school I had to choose a quote to put under my picture in the yearbook. Out of all the songs I knew, for what I was going through at the time the lyrics to "You Can't Always Get What You Want" seemed most appropriate. I couldn't fit all I wanted, so I chose, "But if you try sometime, you might just find You get what you need." I think of that quote a lot - especially when I am sad or have a bad day. I try and think if I have what I need. If I do, then I try and let the things I want go. I try and focus on what I really need - my family, my friends, and my lungs. I try and tell myself that when I lose one of those things then it is time to worry. But so...

Sometimes, talking to certain people makes you think harder about your own life. I talked to several of those people today. It was a good day for talking to people. Today I got to help sort through my recently deceased friend's things. I got to know another friend with CF better. It made me never want to loose touch with anyone because the minute you do they could be gone. Today I talked to one of my favorite people to talk to and I realized again how lucky I am - and that I hate to take any moment in life for granted. I'm going to go out and grab anything and everything I can. I'm going to finish my book this spring - and start work on a 2nd. I have the idea. I know what I'm doing. It should be fabulous. All of this reflection made me then write this note to a friend: "so you're totally welcome to come over tomorrow - or today if it's already monday - but I know I probably sounded like I was joking about the unpacking, but I wasn't. I am a pers...

Merry Christmas, Happy Holidays, Seasons Greetings! Whatever you celebrate, I hope you have a great time! I've had a great time. I, unfortunately, will not be able to attend an annual Girl Scout brunch tomorrow. It's going to be icy and snowy and neither my mother nor I want to drive. I wish I could be there - I love catching up with everyone, but the only drawback is I don't like talking about myself. I don't like having to thing and come up with something interesting that I'm doing with my life. I'm working on finishing a book. I'm working on making changes to the hospital and the medical system. I want to start a little online fundraising business-like thing. I am knitting and watching all the movies I can. I spend as much time as possible with my amazing friends. I spend time with my wonderfully silly family. There really isn't much else to talk about. I hate being a downer at parties - I'd just rather listen to everyone else and not t...

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...

Dear World, This will be my last post until I get my act together and write in my regular paper journal. That is much more cathartic for me because I don't think, I just write.... I am not going to allow myself to blog until I have a good topic in my journal journal. I have made other rules for myself, mainly to help me get back to a good place where I know who I am. I am reading a book by a woman with CF who has had 2 double lung transplants. She is so wise, and I know she's more than 10 years older than I am currently - but her wisdom is what I crave. I know writing in my personal unpublished journals will help me get there. (by the way, her name is Tiffany Christensen and her website is www.sickgirlspeaks.com ) I think I have figured out why I have stopped writing in my personal journal recently: I am afraid of what my mother will find when I am gone. I have never hidden my journals - and I'm surprised she hasn't read them before. But I don't want to self...

Happy Thanksgiving Everyone. I enjoyed my Thanksgiving, and here are some things that I am thankful for. 1. My mother and I are getting along. Who knows why, but things have been peaceful. Shocking, I know. 2. My family - this includes those whom I consider to be part of my extended family. People like Chris, Kyra and Luca, and Sarah Lynn. There could be a couple others - but those are the big ones. The people who get me, who understand my limits and my abilities, and the people I would give my life for. I have loved spending this week with my Mom, Dad, and Darin, and I'm a little sad to be returning home tomorrow. At least I will be going home to see La Luca who I haven't seen in more than a week!!! 3. My friends. Lots of times they help me out and I love them to death - especially because they make me laugh, but the verdict is not completely out, yet. My ideal would be to have them understand me as well as my family, but I don't think it is possible. My dad read...

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...

I have been living with Chris and Kyra this week. Their blog HERE . I like it here, living with Kyra and Chris. I always have someone to talk to. There is someone to do the dishes. I don't have to look at the mess that is my place. That's the big one. I have been home this week to pour my meds, get a change of clothes, and do a load of laundry. ...the activities listed in yesterday's daily post. Those activities, the ones that I went home to do, totally exhausted me. I'm a mess today. Kyra and I went on our daily walk - Kyra actually went on THREE walks yesterday (That's how desperate we are to get this baby to come!) - but since our walk I have just been exhausted. I took a four hour nap this afternoon, and woke up in lots of pain. My problem is not having enough energy to do what needs to get done - or when I find the energy, I pay dearly for it in the next few days. The pain - that's an issue I need to write about, but I haven't yet decided if...

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...

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...