Learning To Live

I'm disowned again.  Maybe just for today or this week, or maybe for a long time.  So Oprah, Law & Order and I have a club.  I'm barely holding it together.  "Like a G6" helps. Awesome friends help - but I usually cry because they are so nice and wonderful to me.  Later I'm going to post the comment Kyra made on my last post because it is just too beautiful not to share.  The other thing that helps is that Katy Perry song "Peacock."  I can't stop watching the silly video I posted a link to last night in the middle of the night. Like Kyra said, I've almost died before, and I came back fighting from that.  I fight for my health all the time.  I can fight through this and survive. So that's what I'm doing today.  Trying to survive and to cry as little as possible.     

Dear Mom, This is my parade.  It's my life, and I'm going to live it the way I want to.  It doesn't mean I don't love or need you.  It means I want to be an adult, because I'm 24.  I found a little song that fits this pretty well.  It goes like this: Don't tell me not to live, Just sit and putter, Life's candy and the sun's A ball of butter. Don't bring around a cloud To rain on my parade! Don't tell me not to fly-- I've simply got to. If someone takes a spill, It's me and not you. Who told you you're allowed To rain on my parade! I'll march my band out, I'll beat my drum, And if I'm fanned out, Your turn at bat, sir. At least I didn't fake it. Hat, sir, I guess I didn't make it! But whether I'm the rose Of sheer perfection, Or freckle on the nose Of life's complexion, The cinder or the shiny apple of its eye, I gotta fly once, I gotta try once, Only can die once, right, sir? ...

My closet is CLEAN.  C. L. E. A. N.  Can you believe it?  ALL of my clothes (minus the ones that need washing...) have a home.  That's right, there are NO clothes on the floor.  They are all either in a drawer or hanging in my new beautiful closet.  Okay, yes, the dining room is slightly more cluttered now, but not bad.  I have a bin of shoes and a huge bag of clothes to donate.  I have piles of clothes for my bonus siblings Kyra and Sarah.  And I was so excited to call my parents and tell them about my new closet and how my clothes finally have a home and I can keep it this way... and my mother says, "Well, we'll see."  Because she has absolutely no faith in me whatsoever.  None.  Honestly, I'm not making this up - if there's something that needs doing, my mother doesn't believe I can do it - BECAUSE I'M NEVER GOOD ENOUGH for her.  So to give her the giant finger, I'm doing a million loads of laundry so everything...

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...

My mom and I special ordered a couch for my house. I call it the New Couch. It is scheduled to arrive in late April - 12 weeks from when we ordered it. This is a little glimpse into the world of waiting for the New Couch. First, I have too much furniture. Not only too I have too much furniture, but I'm itching for more. Not really itching for more furniture in particular, but itching for more space to PUT more furniture. And more furniture would be handy to store the copious amounts of stuff I already have. Like Yarn. Specifically, I want a craft room. So much of my stuff is craft related. I scrapbook, make art w/ paper and photos, and make greeting cards. I also do many other paper-related things. I have lots of paper. I knit. A lot. Therefore I have more yarn than any human should own. I sew. Mainly things with straight lines, like quilts, but I'm going to try and venture out into all kinds of sewing and get more serious about quilting. I'm currently workin...

I've spent a lot of today desperately trying to find where to get my H1N1 shot. In case you don't know, because I have cystic fibrosis I can not get the nasal vaccine. Mine has to be the shot - which is even more impossible to find than the nasal one. I get distracted so easily - like I think it's time for me to go turn the baby so hopefully he will go back to sleep. I am babysitting. Anyways, while I was looking for the H1N1 shot, I was also browsing the internet. Checking up on blogs I haven't read in awhile, facebook stalking people I haven't had contact with in way too long. Most of what I read was written by CF friends. People I don't know in person, but who I don't think I could live without. We talk almost daily - at least leave little notes for each other on Facebook. I love these people. They give me suggestions on how to feel better, how to get through to my doctors, how to live my life. And I like to think that my little suggestions help ...

Tonight as I was driving home I was flipping through my iPod to find a song I wanted to listen to. Sometimes I'm really picky about my music. I have to be in the right mood to listen to certain songs, and some songs I get really tired of. But there are some songs I very rarely get tired of. And there are some sad songs that I almost never skip over. I can listen to them when I'm in any mood. Tonight I came across, "Concrete Angel" by Martina McBride and I played it. I had skipped about 30 songs before I finally settled on "Concrete Angel." I listened to it, and I finally understood why it has always been one of my 'any mood' songs. It touches me somewhere deep in my heart and I think the song has helped me through more than even I could know. The lyrics that are particularly relevent are: "The teacher wonders but she doesn't ask, It's hard to see the pain behind the mask; Bearing the burdon of a secret storm, Sometimes she wishe...

I have a strong urge to watch home movies from when I was a little kid. I want to hear your voice. I know hearing your voice will only make me sad, so I stop myself. I'm 23 years old and I don't understand. I don't understand why you are the way you are or how I ended up here or why I have all these confusing emotions. Sometimes, I want to write about everything honestly. I want to write about pain and destruction. I want to talk about floods of tears and shaking in fear. I want to be honest. I want the world to know the truth. Parts of me are afraid if I write honestly I will lose any chance of ever hearing your voice again. I want to hold onto the possibility of you sitting by my hospital bed after surgery and giving me hugs every night before you leave, because there are some things I can't imagine doing without you. When all this first happened I could never imagine doing home IVs by myself. To be honest, I couldn't imagine doing much of anything witho...

I have a physical mother. She gave birth to me, and for the most part, takes very good care of me. But not everything is quite right. I know all families have their problems, but I have a big one. I am never good enough for my mother. No matter what I do, it never makes up for mistakes I have made in the past. I am never responsible enough, never thankful enough, just not good enough. I have had "last straws" in the past while dealing with my mother. I have sworn to make it on my own, but I have absolutely no idea how I would do that. I don't know how to do things without help. I sit here in my living room right now thinking maybe I should move in a place with roommates and take the bare minimum of things with me. Maybe I should just do it. Maybe I can't. Maybe I don't know. Maybe there is another solution. In addition to the loads of therapy that will get me through this, there is another way to help myself. I now need therapy for my depression, wort...

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...

So I'm in menopause, and I've noticed since my second shot that put me in menopause - wait, KEPT me in menopause - that I haven't been writing. I watch TV and sleep. Last night I noticed when I itched my port milk came out of my breast. Interesting. Yes. When I pushed more I noticed much more milk. So much so that I called my father into the room to ask why the hell I would be lactating. He said probably the Leupron - the menopause med. Today Dad looked up the menopause med, and less than 5% have lactation. So I'm in said less than 5%. 84% have hot flashes. Got those. Got those hot flashes hard core. I spend my days putting on and taking off clothing because I can't regulate my temperature. The last reported "side effect" was a development of a personality disorder - which is impossible and my father and I had a good laugh over it. Mom, on the other hand said, "Well if she's got that she's now got a better personality!" My mo...

The other day my mother told me that women can get cancer from uncircumcised males.

Because you never know when you'll need one. Soooo today. I laid on the couch, got yelled at by my mother, laid on the couch, got yelled at by my mother, cried my eyes out, talked to my dad, and was rescued by a wonderful friend. We went to dinner and had a great time. Then I took her and a couple other friends to a movie I had been wanting to see. Unfortunately, I didn't know how much graphic violence was in the movie - my poor friend hated the movie. I hope she had an okay time anyways. I haven't had chest PT or a vest or a saline today. I am bad. Maybe I am purposely hurting myself just a little to get back at my mother who basically yelled at me because I exist. I'm still in loads of pain - but doing stuff with friends helps me forget how much pain I'm in. My appointment with the gyno is next Thursday. That's a long time for me to wait like this. Boo. I don't know what this weekend is going to be like. I can't decide if dancing is a good o...

I vent a lot about my mom. I vent it here because I need to get it out so I don't go nuts - and if I take it out on her, she'll explode and make my life hell. So that's why I vent. I know how lucky I am to have my mom here to help me with my IVs - well, I do all the IV stuff (she will change my dressing), but she does the other stuff. The cooking, laundry, etc. That's what my mom does. Plus, she stays up with me sometimes while I do my late night meds, and she's always up when I get up. She frustrates me and as I like to say, "cramps my style," but that doesn't mean I don't know how much she does for me. My mom washed my hair tonight so that I could have enough energy to shower. My mom keeps measuring how well I'm doing based on how many hours I'm awake - and she's just so worried when I sleep so much. It's my sinus pain and pressure that cause me to sleep so much - and there's nothing I can do about it until Friday when ...

I hate home IVs. I don't get as much rest as I need. It just doesn't work well. It's not me, because I would rest as much as I need. The problem is my mother. She hates any clutter in my place - and right now it's pretty cluttered from my re-organization project of the summer (which failed miserably. It's now my "Fall-winter project"). She yells at me. She makes me get up and help organize things. She makes me help with the laundry because she's "not my slave." Note to self: do it all inpatient because you can't handle your fucked up crazy mother.

Mom: "That's what I'd get if I ever get a new one - a Cabrio." Me: "A Cabrio, why?" Mom: "I don't remember." ...I thought she was talking about a car, she was talking about a washer and dryer. We're nuts.

I'm having problems. Problems of the emotional sort. Today sucked. Sucked so bad I went and spent $200 on NOTHING. Well, I bought toilet paper, but that doesn't really count. My goal was to go to the store and buy toilet paper, but I found myself wandering around Target aimlessly adding things to my basket. And that added up to $200 - how did I do that? I know how I did that. I sat at home mopey about having to sleep so much because of my sinuses, sort of glad that I had no reason to shower today because I had the day off, and then I was thinking about my mother. And oh, the damage that woman has done. I don't know why, but it has really hit me harder this time. I think I'm figuring out why I do things and a lot of it is Mom. I hate to say that. I hate to be the kid who blames things on her mother, but I can't help it. Mom has screwed me up. You would be screwed up too if she canceled your 17th and 18th birthdays. Yes, she canceled them. And it's a...

1. I am missing my whistle from my car keys. So mad about it. I blame my mother because I can. 2. My mother is a nut job. Today she said to me, "I'm going to sell this place!" (This place being the home where I live, which unfortunately is in her name. Thank God it's also in my father's name). My father then said, "And then what is she going to do?" and Mom goes, "That's HER problem." 3. My mother is a nut job. So I forgot about clothes I had in the dryer... oh... a week ago or more. My mother discovered them today, and the mildew that was growing on the inside of the dryer (I had run the dryer, but they were mildly damp because they were towels). This sparked the never-ending yelling. Well that, and the fact that something dropped off a pizza I once made in the oven and was burning while we made the quiche for breakfast... oops. So anyways, Mom is screaming at me about the laundry and I go, "Well I'm sorry that when you ...

My mother left. We had a nice time last night with Chris and Kyra, but today, all she did is yell at me. I'm going to write more about this later - I'm pretty upset now and don't feel like writing about it. I was doing so well - I was so proud of myself. I was so happy that she decided to celebrate my birthday this year. I was doing great. And now she smashed it and I have to rebuild my self esteem. I hate this.

Today is a bad day so far. Maybe it's because I've done basically nothing. Or maybe it's because I'm having a bad day in terms of depression. Does anyone know if with depression there are good days and bad days, even when you're on your therapeutic dose of medication? I hope not. I want just good days. I want Sunshine and Lollipops. Maybe I'm sad because I keep finding new blogs about little kids who have died from CF - at like, age 12. I hate that, but why can't I stop reading? The medical stuff I've found out is maybe too much for me. I'm now trying to digest what end-stage CF looks like, because I've never physically been near a friend who was end-stage. The two friends I've had die in the last year weren't extremely close friends, so I wasn't there near the end. Now I have read what end-stage looks like, and I know enough to know that it is bad. Very, very bad. And maybe I'm finally scared for me - but even more so,...