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...

In less than two weeks it will be ONE YEAR since I have had any IV antibiotics.  Sometimes, I still can't get my mind around this.  Part of me feels so free, and another part of me feels really tied down - waiting for the bottom to drop out.  Waiting until I'm sick again. And I know that is not how I want to live my life.  I am so grateful for everything I have going for me right now.  I want to live my life to the fullest for every CFer who is still in a hospital bed somewhere.  I want to fight for research and CF awareness.  I want people to know how isolating this disease is and how much we need to talk to each other to get through this.  But I still feel guilty sometimes.  What did I do to deserve this good health?  Why did people I care about leave this earth?  Why wasn't it me?  Do I have a purpose in still being here?  Am I as inspirational as those we have lost?  I hope so.  I feel blessed because I...

I'm deciding what I want in life.  I am figuring out what is most important in life.  I am figuring out how to maintain my current good health and trying to decide what to do with it - with all the extra energy and time.  I know, this could be a big, important post.  Or it could be a short little one with some goals.  I'm leaning towards the 2nd option because I need a nap, but I've got some very important, mind-blowing ideas rattling in my head and I want to get them out there.  I want to keep babysitting.  I want to be a better dancer. I want to enjoy my life and have plenty of time for family and friends. I want to have time for my mindless TV and crafts. I want to be out there speaking about cystic fibrosis.  I want to speak at CF Foundation events.  It's that last goal I want to talk about today.  I am different.  I'm different from many CF patients.  I am compliant to a point - if it's not working for me, I won'...

 *I feel so healthy!  *I love this photo from the masquerade ball!  *I feel so healthy!  *I can't believe how good I feel!  *I'm taking about 80% fewer naps!  *I'm quilting again!  *I can shower before I go places - and I still have energy left!  *I feel so good I want to cry.  *It's been so long since I've felt like this - I don't know if I've ever felt this good.  *I'm going to get my place in tip-top shape!  *You should see the organization of my meds.  It ROCKS. The end.  Happy Wednesday!

I want to scream from the rooftops "I'm ALL BETTER!!!" I want to dance and spin and jump up and down BECAUSE I CAN! I am loving the song "Defying Gravity" (the Glee version). The lyrics are speaking to me - in parentheses are my thoughts/reasons why I love that line! Defying Gravity Something has changed within me (I feel better physically AND mentally! Finally!) Something is not the same (I'm not so crazy) I'm through with playing by the rules (CF should keep me from doing things) Of someone else's game (CF is NOT my game) Too late for second-guessing Too late to go back to sleep (Let's stay awake!!!) It's time to trust my instincts Close my eyes: and leap! (I'm Leaping back into life!) It's time to try Defying gravity I think I'll try Defying gravity Kiss me goodbye I am defying gravity And you wont bring me down! (No one will bring me down!) I'm through accepting limits ''cause someo...

"You Are My Sunshine" is the state song of Louisiana. I think I was really supposed to be born there. I absolutely love it (except for the fact that there is all that DAMN humidity. I think I'd go north - or way west to Hawai'i for the summer). And my dad lived there until after the 9th grade. "You Are My Sunshine" is a song my mother couldn't listen to when I was a child because of the connotations and the fact that I have cystic fibrosis. Today I am in a very dark place. I've been in this dark place for awhile now, and I'm doing my best to fight my way out. But there are days I want to give up fighting and trying to live my life and I just want to go to sleep until it's all over. It won't be over until I fight my way through, but try using logic with CRAZY. It doesn't work. Last week I had to check myself in somewhere where I could get more help. I thought about a psych ward, but that's expensive and I wanted to...

I want to make changes to my site. Like linking it so that every post shows up on Facebook. And I want to redo my profile. My life isn't just about CF - it's also about dealing with my mental challenges (PTSD, Depression, Anxiety, etc?), and the mysterious lack of energy I have. Also fibro and endometriosis. MAN I am a cool chick with a ton of problems. Lastly, I'd like to include that I deal with a host of other crazy influences in my life. I found this email from December '08. I was planning a trip to San Jose/San Fran with my friends. I went on the trip and it was wonderful... but this is what happened leading up to it: 12/19/08 Thanks, Dad. I will pay you back [for the plane ticket]. Mom woke me up this morning and told me that I've ruined Christmas. So much for her not going ballistic. She also went on for at least 10 minutes about how steep San Fran is. I set the phone down and ignored her. And I'm a horrible person for not taking no for an an...

I may not always know exactly who I am but I know who I am not. I am not The Girl With CF. Your Friend With CF. That Person With Cystic Fibrosis. Describe me any other way you want, but don't point me out as the one with CF. Because I am so much more. Call me any of those other qualities. Call me smart, brilliant, radiant, depressing. Call me pretty, ugly, sweet, or even bitchy. Nerdy, out-going, social, bubbly. Honest, not honest, creative, aggressive. Dependable, irresponsible, punctual, flighty will do. Tell them I love children. I love music and dance. I quilt, sew, scrapbook and knit. I'm a film buff. And I even love the bad ones. Tell them I'm stylish, addicted to purses, and I love me lots of shoes. I have red hair, or brown hair, or hair that gets cut once a year. I have green eyes. And I always wear glasses because I'm too irresponsible to wear contacts. I'm organized but not neat. Clean but not exactly immaculate. I'm chunky, not-quite thin, not at...

I found this video today. I usually watch Momversation videos because I am with children a lot, I enjoy the panelists, and it's just a really well-done site. This video hit home. I feel I can never do enough for depression and mental illness. Mental illness is horrible. I've said this before, but I have very little trouble living my life with my physical illnesses - my cystic fibrosis and my diabetes (not to mention the fibromyalgia, endometriosis, chronic migraines and something I'm sure I'm forgetting). I really don't mind them so much. I have to take medicine and do treatments, but those are okay. Sometimes I get angry or sad because this is the way my life is, but for the most part, I accept it. When I am not sufficiently medicated for my mental illnesses (PTSD, depression, anxiety, etc.) I am a complete mess. It's hard to put into words the difference between physical and mental illness, but I'm trying. Mental illness is all-consuming. You can...

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...