Sunday, December 13, 2009

Is This Irony?

I was sitting here at my desktop watching Season Five of "Mad About You" and playing Minesweeper. It's pretty typical of me when I'm at my desk. I watch TV and play Minesweeper or Solitaire - something mindless so I can pay attention to the show and think.

And I was thinking about two people I know who would be a really cute couple. And I thought, "Yeah, well lucky for them they are both healthy." It's that whole - "No one wants me because I'm sick" thing. And I know I'm not the only one who suffers from it; we're the ones who have been rejected because our family is crazy or we are too sick or our left little toe is too big. And all we want is someone who understands.

So my thoughts naturally went, well maybe I should only date sick people then because we would understand each other. My next thought was, "Yeah, but I don't really want to deal with that. I have enough to deal with."

I am the people I hate.

Wednesday, December 2, 2009

What?

What is wrong with me?

I really want to be the glass-half-full person, but maybe I'm just not. Maybe the things that have gone wrong or have been bad will continue to eat me alive and I'll never get out of this mess.

But I want to be happy and have positive things to say. WHERE ARE YOU, POSITIVE THOUGHTS?!?!

Sunday, November 29, 2009

Learning Curve

My life has a strange learning curve. One moment I think I'm going along fine and then BAM! I'm sad. I'm obsessed with picking at my face. I'm a mess.

I'm angry about it now. I want to change. I'm going to change.

It may take a long time to get all these confusing things figured out - and I may just have to learn to be patient, because that is one thing I definitely am not.

And so begins (or continues) my journey to learn how to live in my own skin. How to own up to all the crazy in my brain, the illness in my body, and the sorrow in my heart. I'm going to learn how to live with it all.


-- Post From My iPhone

Friday, November 27, 2009

Thankful and that Jazz

For the first time in my life I didn't spend Thanksgiving with my immediate family. Not like Thanksgiving was a huge deal in recent years. I don't remember the last time we went all out and got dressed up and used the good plates and had way too much food. I've never really been to a Thanksgiving with extended family - and if I have, I don't remember.

So this year, I was disowned by my mother. I worried for months about Thanksgiving and Christmas. Honestly, I'm still worried about Christmas because I don't have definite plans. But that is a different story. Today, it's all about Thanksgiving.

I spent Thanksgiving with my best friend Sarah Lynn. Sarah Lynn and I have been best friends since Kindergarten. She's possibly the best person on the planet. I arrived Wednesday evening at her apartment. We stayed up late looking through high school scrapbooks and catching up. Her boyfriend, Chris, awed me with his cooking abilities. Things I would never dare attempt - like a cake from SCRATCH. It's all boxes here, baby.

Thursday morning I woke up un-Godly early as usual and had time to contemplate the looming events. I sat at the kitchen table sipping hot chocolate wanting to document that exact moment. I was so excited to go to a REAL Thanksgiving. One with lots of people and food and laughing and things that seem much more normal than the way my family works.

We attended two Thanksgiving dinners - and I can't put into words how they made me feel. So warm and loved, even though it wasn't my family. It made me elated to partake in the festivities, and a little bit sad because my family is nothing like that.

This year I have so much to be thankful for - my health, friends, family members who haven't disowned me, a good therapist, a new and wonderful primary doctor. Not to mention antidepressants.

But mostly, I am thankful for my fabulous best friend, her boyfriend, and the hospitality of people who aren't related to me.

Happy Thanksgiving, ya'll!!!

Friday, November 13, 2009

A New Motto

"I don't want to be the one who dies."

"Then be the one who lives." - Private Practice


A pretty good motto, if I say so myself. I'm going to be the one who lives. Sometimes it is hard to see friends die - especially hard if they die from the same thing you've got. It's a complete battle but I'm ready to take aim and fight every day. It's what I was put here to do. Fight, and write a book about that fighting.

(Everything else is just fun, but I sure do like the fun :-) )

Some Thinklings and Stuff

• I broke down and called Mom tonight. It's complicated, but I have been missing her - when I went bra shopping yesterday, when I heard a sad song earlier this week. And today my nurse was a nurse from the hospital who my mother really likes. It's really hard to breakaway.

• Bra shopping is awful and tiring but I did it! I found a comfortable 36DD that doesn't come up to my neck.

• My friends are the absolute best!!! I love them!

• If I had more energy I would dance a lot more!

• What is your favorite thing to give as a hostess gift? I need ideas!


-- Post From My iPhone

A Few Photos

A recent photo of me.


What it looks like when I'm trying to write my book.


My first sweater!!! I've been knitting since 2nd grade and I'm just now trying to make a sweater. I'm excited!!!

Dating Deliemas

Last night I watched the latest episode of "Glee." Spoiler alert, in case you haven't seen it yet.

In the show there is a character in a wheel chair. There was a wonderful scene where he is singing "Dancing with Myself" and he's dancing. It was expressing how alone he often feels and how he deals with it and moves on. At least that's what I got out of it. Maybe it was because earlier in the day I had been discussing with a good friend the perils of dating when you have physical and/or mental issues. The scene made me particularly happy because in my life I am trying to learn to be happy by myself. I'm trying to learn to be my own best friend, my own significant other, my own support.

Trying to find my own happiness doesn't make me any less frustrated with many people in the "normal," "healthy" population. A good friend of mine recently had a relationship end because the guy couldn't deal with her 'unresolvable issues.' What? Really? I know she's angry, but I'm angry for her too. Some things you just can't help, and it's really hard to be in a situation watching someone walk away because they don't want to deal with illness. And sometimes I secretly hope they end up with cancer so they know what illness is like. I don't wish a DEADLY cancer on them - but something they have to go through chemo for. Something that will make them completely dependent on other people for awhile. Something that will make them value life.

I wonder if it is a lack of strength in these people, or if they have unfound strength and they just aren't willing to find the inner strength to deal with an illness.

I hate dating. I absolutely hate it. Once I'm in a relationship I really enjoy it and am happy and things seem a little easier when I have a person to depend on, but the beginning of the dating I can't stand. I've written about this a lot, but it's a huge issue. Not just for me but for many people I know. I know several people who have gone through a double lung transplant, only to have their spouse leave them afterward. Apparently, they would have felt too guilty leaving when the person was dying waiting for lungs, but after they are in the clear to leave. I just don't know what to think about that.

But back to me. I hate dating. I hate the anticipation of the rejection that is coming. Because deep down I just expect the guy to get scared and run. It also seems that each time it happens I just get more angry about it and then I'm scared to date again because I don't want to be rejected because of my health. I already don't like the fact that I'm not perfectly healthy, I would just rather not have other people leave me because of my health.

I don't like having to explain all I've been through and all the issues I have. I get really anxious. It's terrible. I think I need to take some valium before I date. That's a good idea. I'd be completely relaxed, and probably reveal way more than I should on a first/second/third date. Maybe not such a good idea.

That is another issue. WHEN do I tell a guy about everything? I can't hide the CF and the diabetes. I take pills and insulin. I can hide all the other things, to an extent. When do I disclose exactly how much pain I'm in all the time? Or tell him about the trauma that resulted in my PTSD? Maybe I shouldn't tell him - except that I still have nightmares and the occasional flashback and how do I explain my quirky behavior? How do I explain all those trips to see my therapist?

If you have an answer, please share, because I am stumped about all of this.

Thursday, November 12, 2009

Fighting

It is way too late for me to be up. This probably won't be cohesive, but here goes!

Today I am argumentative. I'm pissed. I'm pissed at cystic fibrosis. I'm pissed that it has taken friends of mine away from me. Today I desperately pounded out an email to my dad:

"I feel sad because nothing fits right anymore. I can't believe I have just one pair of jeans. And then I have some yoga pants, but they are more "I wear these around the house because they make me feel like I'm dressed." I just want to go spend money. Arg. I have the dreaded "shopping makes me happy" thing Mom has.

I learned that Craig from Cedarburg died this past week. He was a senior when I was a freshman and he had CF. So I'm freaking out. And a blogger I follow, also named Lauren, died this week. She was FINE in June, and now she's gone. She was blogging about how she'd gotten her FEV1 up from 47% to 50 something %, and that's about where I float sometimes. I think I'm currently a little better than that. But in JUNE she was in the 50s and now she's DEAD. I know this stuff probably freaks you out, too, but I honestly have no idea what to do with the info. And then Lauren, who coded last weekend and is pretty much blind - possibly forever. I don't want that. I want to knit and write and read books. Maybe I will devote my life to watching tv/movies, knitting, and reading books ALL AT THE SAME TIME so that I can get it all in.

I'm working on my book, and that's good.

But I'm freaking out because people are dropping dead again. I want Mom to take me shopping and buy me lots of things I sort of need but just really want."

So I'm trying to process those emotions and I get side tracked. I end up arguing about abortion on facebook with people I don't even know. It sort of just feels good to be fighting. The fight is sort of turning into stuff about health care reform because someone said they didn't care about health care reform so I replied, "Well lucky you; healthy enough to not give a shit about how the govt changes health care."

So a little harsh there, but it only gets worse. And I sort of love it. I love the anger and releasing it on total strangers so I don't end up hurting myself because I'm in so much pain over the death of CF friends and my mother deserting me and pain for friends who are having a hard time.

And then someone says something stupid that doesn't make much since, so I reply:

"1. Sometimes you don't find out you're pregnant until it is too late for the pill. What if your life is in danger? Do you have to pay to have an abortion to save your life?

2. Before, I was simply pointing out that some people have the luxury of being able to deal with whatever the outcome of the health care bill is. Some people, like myself ... Read Moredon't. I take about 20,000 pills per year. Who's going to pay for that if I get denied because of a pre-existing condition I've had since conception??? Shit has to get fixed."

And then another jerk says THIS. Wait for it, you will LAUGH. Knowing me and how mad this makes me will make you laugh, I promise. Okay, here it is:

"Carla, even the amendment in question had a provision for abortion coverage in the case of a life-threatening pregnancy. 55 pills/day is a bit of an exaggeration, also."

REALLY? YOU'RE GOING TO DOUBT THE AMOUNT OF PILLS I TAKE?!?!?! Sure, honestly, it's a few less than that, but not by much. It's about 50 a day. So I say this:

"Want to come to my house and count the pills? Come on on over! That's not mentioning all the IV antibiotics I do in a year. The hospital stays, my annual sinus surgery, etc. Come to my house and count my damn pills."

By this time I'm a little crazy, and if you're still following the conversation, KUDOS. Serious kudos.

I don't even want to go into the rest of the argument. It came down to him saying I was fine without a public option, so what does it matter? And I end up typing in all caps about the friends who are dropping dead from this disease. We need a system to make sure these people get their meds no matter what. I know a family that has two kids with CF and their main bread winner/holder of the insurance got laid off in August. It gets so complicated!!! And all these people deserve is a break. When you're sick you shouldn't have to worry about how you're going to pay for your treatment. It should just happen.

HEALTH CARE FOR ALL!

I think I'm done fighting for this evening, because I'm so tired I'm about to fall over.

Wednesday, November 11, 2009

The Book

I am redoing my book. Revamping, reorganizing, rewriting. Ugh. The book that I had almost completed? The book that I was so close to finishing? Yes, that book.

I got stuck. I didn't know what to do. I didn't know how to finish. So I sat around thinking about it. I asked some very wise people their opinions, and I came up with a solution. I will redo the book.

My dilemma was mostly I didn't know what to say about my mother. I could write an entire book about our relationship and all the things that have happened over the years. My mother is crazy - but I say that knowing full well my mental screws are quite loose. One of the main differences is that I go to therapy weekly, have a psychiatrist, and am medicated. And I get along fine.

The other issue was my book is mainly about learning to live (see title of blog), with Cystic Fibrosis. But I don't just have cystic fibrosis. CF is the hardest thing for me to hide. I can hide depression and PTSD. I can hide endometriosis and never speak of the fibromyalgia - but the cystic fibrosis is always there. I cough, I take pills, and about every three months I do two weeks of IV antibiotics (either at home or in the hospital. Sometimes a combination of the two). Were I trying to hide my CF, I would disappear every three months for two weeks. I tried hiding my CF back before I ever had to do IV antibiotics and it was nearly impossible. I wasn't diabetic back then either.

But being diabetic isn't really a big deal to me. It bugs me that it is the reason I gain all this weight and can't lose any, but other than that, I don't really mind being diabetic. Being diabetic is much more 'normal' than any of the other things I deal with.

So I am working on making my book more about all the things I deal with - not just CF. Even though CF is my passion (working with people with CF, working to raise money for research, etc), I feel it is equally important to include those other things I have. I may not talk about endometriosis extensively - because I don't think of it everyday. I was in a lot of pain for several months, and now I'm in menopause. I can write an esssay about that and include.

The PTSD/anxiety/depression is more of an issue. That I deal with frequently, though maybe not daily. It certainly changed my life - whether for the good or bad I don't really know. Maybe I'll find out while writing about my mental challenges. I'm thinking I need to introduce the concept of me having mental 'issues' before chapter 5. I should make it known and talk about it openly. Sort of like how I should talk about my mother openly. Good luck with that one.

Maybe I need to just write a sitcom. Because I often feel like I'm living in one.

Meaningless Post

This post is for me. This is my list of things I want to/need to do to get ready to put up my holiday decorations!

Put away fall decorations.
Vacuum.
Clean the couch and ottoman.
Move the big round chair.

List of things I need to do/get:

New shoes.
Candles.
Pair of cords. Sadly, I'm not losing any weight yet. One pair of pants will not get me through winter.
Shirt from Crazy Shirts. Because I deserve another cute winter shirt.
Round shiny ornaments to make wreath or tree or something.
Stuff for gifts for people.
Order Photos. 8x10s, 5x7s, etc.

I think that's it for now.

Wednesday, November 4, 2009

Depression Hurts

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't escape. I can escape or be distracted from thinking about my physical illness, but the mental illness takes over your brain and is just there. For me, the only escape is sleep.

It's no secret I'm working on a book, and these issues are some of what is keeping me from finishing it. Cystic Fibrosis is a huge part of my life. It has shaped me and my family, but that is not the only illness I have. I consider my other physical illesses minor - not so life-shaping. Many of them are related to my CF. But the mental illness. I don't know where it came from. I don't know why I have it. And sometimes, I don't know what to do with it. Do I tell people? Do I let people know I'm the girl with cystic fibrosis who is also pretty mentally ill? But I'm medicated! I'm okay!

But the pain from the mental illness is still a memory and I still understand what it is like. Do I make this a secondary focus of my book? After all, I have had to learn to live with these mental illnesses as well. I've had to get through them to get where I am now. Do I totally re-shape my book to include these? Maybe. I could be on my way to writing the "War and Peace" of surviving medical ailments. Maybe I need an editor.

In anycase, go watch this video. It's good.

http://www.momversation.com/episodes/depression-hurts-overcoming-depression

Sidetracked

I'm organizing my house. The WHOLE house. At first it was going well, but I think I started before I was babysitting regularly. Anyways, I started in the master bathroom - and it went well. It actually is still pretty organized. And my bathtub makes a GREAT clothes hamper. I have yet to put the actual hampers back in the bathtub. The hampers are still in the dining room. Oh, the dining room. What a mess.

Apparently, my idea of organization is also decoration. As a way of organizing I have hung photos and decorations. It gets the photos up off the table and onto the walls. I call that organizing. I still have a few things to hang - like switching some photos out of my room and into the guest bathroom, and then hanging more personal stuff I have on that wall in my bedroom. I also have a memory board to hang in the den. And photos of me as a baby in the guest room. I should probably get at that. It would make me feel like I accomplished something fantastic, even though it doesn't put me a whole lot closer to having my house organized.

The past couple weeks I have been focusing on getting my knitting stuff organized. I made a knitting needle holder, and I knit a holder for some of the accessories like stitch holders and pins and needles. This morning I was almost late getting out the door because I lost a knitting needle. I had a gold knitting needle last night and this morning I couldn't find it. I even lifted the couch and couldn't find it. Where did it go!?!? I'm now obsessed with finding this knitting needle. Never mind I have about 6 other pairs of size 8 knitting needles that I could use, but I liked using this particular gold one. And I can't get over where a knitting needle would go! I swear it walked away. My living room isn't very big. I lifted the couch cushions, and all the things on the floor. I moved the ottoman and even the chair. I have no idea where the stupid thing went. And spending all this time looking for a lost knitting needle again gets me so much closer to having my place all organized.

I see organizing, well more like obsessing over the organization of my knitting stuff, as a good step towards having an organized house because my knitting stuff usually is all over the place. I now have a good system for keeping the needles and tools organized, but how do I keep the yarn organized? I have three drawers full of yarn, several boxes of yarn and miscellaneous bags of yarn all over the place. Maybe that's my next project - containing the yarn. But containing the yarn is yet another side project that isn't really getting me anywhere in organizing my house.

I have organized one corner of my bedroom. And I am proud of that corner. That corner and the bathroom - well currently the bathroom is a little messy because of a certain toddler that wanted to see everything I had in the cabinets, but that's no big deal. All of that can be put away again. And at least all my stuff in the cabinets is labeled.

That's my favorite part of organizing - using my label maker. If anyone saw a recent episode of "Jon and Kate Plus 8," Kate got her very first label maker. Her reaction was squeals and jumping up and down. I had a very similar reaction last Christmas when I got my own label maker. Sadly, today I ran out of tape for the label maker, so I couldn't finish labeling my circular knitting needles. I'll have to find the extra tape (I think I know where it is, but because my place isn't organized, it could be anywhere). I was in a hurry this morning and didn't get around to getting it because I was looking for a missing size 8 knitting needle. Color: Gold.

Monday, November 2, 2009

A Little Bit Country

I like country music. Not gonna lie. I drive my brother nuts with my admiration of country. He starts to wail and scream if I pause on a country radio station in the car of if I want to listen to the country song that comes up on my iPod. What a baby. I listen to his crap, but that's not the point.

Country music is catchy and has a good beat; those two together tend to leave me with the songs stuck in my head.

In fall of 2004 I was a freshman in college. I had my own room and was able to listen to whatever I wanted. I became a big fan of Toby Keith's song "Stays in Mexico." Either that summer or the summer before I had seen Toby Keith in concert and had so much fun I became an instant and true fan.

In November 2004 I had my appendix taken out. When I woke from the first surgery I made sure I still knew how to do double and triple integrals for my calculus midterm, and then I went back to sleep. The next day I nearly died from blood loss and had emergency surgery. When I finally woke up after the second surgery, I found I had "Stays in Mexico" in my head. Since it was a fairly new song (at least to me), all I could remember was this part of the chorus:

"Don't bite off more than you can chew
There's things down here the devil himself wouldn't do"

But I often changed "wouldn't" to "couldn't." There were so many times that November I thought I might never walk normally again. We thought I might have brain damage. My recovery was painfully slow. I remember once I was in the bathroom in my hospital room, with those two lines stuck in my head. It was one of the first times I was able to get myself to the bathroom and I was thinking that maybe the next day I would shower. I was tired of bed baths. My family and nurses didn't even know that I had gotten myself to the bathroom. I did it because I was tired of waiting for the nurses to show up. It took two people to get me and my IV pole the four feet to the bathroom - and that made me mad. I did it by myself.

But I had those two lines stuck in my head. "Don't bite off more than you can chew." I knew I was too tired to get myself back to bed, so I called for help. And the second line often made me smile "There's things down here the devil himself couldn't do." I knew that I was stronger than most for surviving the whole horrible ordeal, and that if I survived it initially I could get better. I just had to remember to take it slowly.

And that's how I try to live my life now. I try not to bite off more than I can chew. I know what I can handle and I have learned to say 'no,' if I just need to stay home and rest. I have learned that taking care of me comes first, because gosh darn it! I've survived more than most people could, and I'm going to keep on fighting.

Today I was listening to my iPod while I was in the shower, and "Stays in Mexico" started playing. Every time that chorus plays I go back to sitting on the toilet in that hospital room singing "Don't bite off more than you can chew/There's things down here the Devil himself couldn't do." And I can laugh. I can laugh that I was so sick there was nothing in my brain except that song. I was so sick walking the four feet to the bathroom wore me out - and was actually biting off more than I could chew. I can laugh because I survived. I can laugh because I recovered. I can laugh because I am healthy and happy.

And now I know how to avoid biting off more than I can chew. Thank you country music.

Wednesday, October 28, 2009

Surfing the Internet

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 them too.

I saw a trailer for a documentary about a girl with CF. It's called 65_RedRoses and follows her journey waiting for lungs and receiving them. It received numerous awards at a Canadian film festival, and I can't wait to see the film for myself. I have been reading her blog for a long time and I wish my blog could be more like hers. I wish I weren't too lazy to upload daily photos - of myself or other things. I tired it for awhile, and then my life got in the way.

I suppose it is a good thing when I blog less because it means I am out living my life. I tend to blog more when I am sick and stuck next to my computer. Currently, I am not sick *crosses fingers*.

I have been so healthy since, well, since my mother left my life. I have so much less stress and more joy. I have more joy staying at home and watching TV. I have more joy running errands and going to the grocery store. I have joy doing laundry and dishes. These were things I couldn't do physically or mentally (I'm actually not sure which), before my mother left. I think I spent so much energy trying to make my mother happy, I didn't know how to make myself happy. And now I'm happy - and much healthier.

And I think that's all I want to say for right now.

<3 Carla

Thursday, October 15, 2009

Blind, Deaf, and Legless

Today was a bad day. I suppose I enjoyed knitting and watching 2 movies and many shows on my DVR (GLEE!), but today was a bad day emotionally.

Every morning I wake up around 7:30 and have breakfast. Banana nut cheerios. I love them. I hate starting my morning without them. But every day for about the last week my blood sugar crashes at 11am. Crashes to the point where I'm shaking and wobbly and can't think straight. So I have an early binge lunch. Every time it happens it scares me. But I have been logical. After the first two times it happened I changed my insulin - gave myself less with my breakfast, but my blood sugar still plummeted. So I gave myself no insulin the next day. And crash again. I decided I had gone the wrong direction. I gave myself a normal amount yesterday and a little extra today. Crash and Crash. So in my head I am panicking that my diabetes is out of control and I'll never be able to fix it (see the scientific way I went about trying to fix it already!), and I will go blind and lose my legs. I'm blind and legless.

I go to the phone to frantically try to get ahold of my dad because he can always calm me down and tell me how to fix my problems. After an hour of trying, I call my brother. He is brilliant, but I think I interrupted his studying, which can confuse him. And he came up with these gems. First he was confused when I told him I am going to end up blind and legless. I yell, "DARIN! I'm going to go BLIND! And lose my LEGS!!! I won't be able to watch movies, or knit any new patterns. I'll have to keep knitting the patterns I have memorized over and over. And I won't be able to dance. How can I dance if I have no legs?" And he goes, "Well, can you see right now?" I'm being melodramatic here. I'm afraid that somewhere in the future I will go blind and lose my legs, and he asks me if I can still see. YES.

And then my sweet, wonderful brother says, "Carla, you're probably going to go deaf from antibiotics before you go blind or your legs fall off." OH GOOD. Now I'm Blind, DEAF, and Legless. I can't even listen to music anymore - or talk to any one! Oh My God! I'm going to be stuck with my own thoughts for the rest of my life. THAT'S THE SCARRIEST THING THAT HAS EVER HAPPENED!!!

Wait, back up. My brother thinks that when my diabetes continues to be out of control my legs will just FALL OFF? Hilarious. I had to remind him that a diabetic loses sensations in the legs - neuropathy - and then usually they get infected and have to be amputated. They just don't FALL OFF. But it's funny to think that some day I could be dancing and my leg just falls off. So I hop on the remaining leg until it falls off, and then I either find myself a wheel chair, or just lie on the floor and wiggle around to get places. Which might be hard if I'm also blind and deaf...

I can see myself on the floor with my hands above my head wiggling, trying to get somewhere, not even sure where I am to begin with. But I keep wiggling. Wiggle Wiggle Wiggle. Imagine it. It's the thing that's made me smile the most today!

The other option my brother gave me - after reminding me that they can fix the hearing problem with cochlear implants, the vision with transplant of some sort of micro chip, and if my legs fall off I can get those cool legs for running. Then I can run really really fast - after I have a lung transplant. My brother said, "Well if they're going to do that, they should just take your brain and put it in a robot!"

And I said, "JUST LIKE DARTH VADER!!!" And I proceeded to breathe heavily into the phone, demonstrating what an awesome candidate for a full-body life support system I am. And I'd get a cool cape, too. And I could be a SKINNY robot. Well, a well-proportioned robot - the size I used to be before I gained all this crappy weight.

Which brings me to one of the reasons I'm so depressed. I hate this extra weight. And I'm sad about my mom. And sad about high school. And sad about the time I lost the school science fair in 4th grade. I did my project on inhaled DNase. I was in the clinical trial and therefore my science project was very boring compared to the kid who taped two soda bottles together and made a tornado.

I was excited to find out that ALL FOUR of my podcasts are up on CFvoice.com - too bad I can't listen to NUMBER 2 because I have to LOGIN - and they change my password on me. I can't choose my own password to the site, because it's a pretty lame site. I can't listen to the podcast I recorded. It's ME. MY PODCAST. And I can't listen to it because I don't know my own password. Of all the ways to end my day - listening to myself be the worst story teller in the world is humorous, but I can't figure out how to listen to the one where I talk about my parents until tomorrow. I better hurry, though, because I have no idea how long it's going to be before I'm Blind, Deaf, and Legless.

Tuesday, October 13, 2009

Happy Birthday!!!

First, a very Happy 24th Birthday (today) to my best friend since Kindergarten, Sarah Lynn. I love you!

One year ago tonight I was helping another best friend push. And push and push and push. She pushed herself to the very limit, and I'll never know how she found the strength to do it. I don't think I could have.

While I didn't actually witness the moment of birth of my (honorary) nephew, Luca, just being there for the whole experience was something I will always treasure. I know that my body isn't strong enough to carry a child (not to mention that my mind isn't healthy enough to be without my happy pills), so being around the strength, pain, and most importantly the love of the process of childbirth was a true gift.

I wandered the halls of the hospital that night, waiting for Chris, Kyra and New Baby Luca to return from the recovery room. It was so quiet - but a happy, peaceful quiet. I've wandered many halls of hospitals late at night. I loved being on the maternity wing. When I'm a patient in the hospital, wandering around always has an eerie quality - it's the hospital, all the sick people. But on a floor with new babies, there's a little bit of magic in the air. I soaked up all the magic I could because I knew I'd never be there to deliver a baby, and I'd probably never get the opportunity to become an Auntie biologically (with just the one gay brother and all).

A brand new baby. I can't believe Luca was born a year ago tonight. Just thinking about it I can feel all the emoitions of that evening rushing back. The excitement of bringing a new life into the world - the opportunity to mold a person and help a little one explore his surroundings.

Love. That is the only emotion I felt as I held you for the first time, Luca. One year ago tonight you came into my life, Mr. Big, and I'm so happy you finally graced us with your presence. This has been one of the best years of my life - you always make me smile. And now you know when you're funny, and you laugh at yourself. And that only makes me laugh harder.

We celebrated Luca's first birthday over the weekend - and again, it was one of the best experiences of my life. Watching you grow, learn, and play makes me realize the importance of little things and the insignificance of certain bigger things.

I love you, Luca! Happy 1st Birthday!!!

Love,
Auntie Carla

Wednesday, October 7, 2009

Rainbows and Lollipops

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 wishes she was never born;

Through the wind and the rain,
She stands hard as a stone in a world that she can't rise above;
But her dreams give her wings and she flies to a place where she's loved.

Concrete Angel"

High school was my secret storm. Well, I guess I've always had a secret storm, but my secret storm became a tropical depression, and then a full on hurricane during high school. When I think about things - how angry I was, the freshmen I beat up, the best friend I screamed at and beat with my nalgene - I wonder how my teachers didn't know something was wrong. Maybe they did think something was wrong, but like in the song, they never asked. That's what I like to think because I was in so much pain and trouble, it's hard for me to conceive that no one noticed.

When I think about high school, I don't know how I got up in the morning. I don't know why I wasn't suicidal. I don't know how I went to school every day - except for the fact that it was an escape from home. And I don't know how I went home at night - except it was an escape from the hell I lived while at school. All I know is I spent a lot of time at extracirricular activities - and I was happy there. Forensics, Marching Band and Swing Choir probably saved my life. I had places and people with whom I felt safe. Once I got to be a junior, I spent a lot of time driving around in my car, and I was happy there. I spent time at a household as crazy if not crazier than my own, and I was confused there, but at least I wasn't being attacked.

I know I put on a very brave, false and sometimes scary mask. I was always healthy if anyone asked. I was always happy. I was always perfect. That's what I thought I had to be to get out of my hometown and end up in my college town. And I certainly had my eyes on the goal. After my sophomore year of high school I started counting down the days until I left for college. I made a list of the things I wanted to take with me. I saw college as running away forever, and I tried to take everything with me.

It was one hell of a hurricane, and after getting worse in college, it eventually got better. It went back to being a tropical depression and eventually just a storm. I've lived with my secret storm for so long, now that I'm escaping I'm not really sure what to do.

My mother is my secret storm. I don't know how else to put it. She has always caused me a lot of pain and grief, but at the same time I love her very much. There are times when we have gotten along so beautifully I called her my best friend. But then there always the sudden cloud bursts of anger that are so hard to get through.

One day, it was so bad I cut my wrist while I was waiting for the kids I was babysitting to finish their swimming lessons. I couldn't stop crying. I was 19 and thought I was done being controlled. I remember the pain so vividly. I tried to hide my pain from the kids and their mom, but the mom saw right through me. She knew some of the problems I was having at home, and she sent me home early because I just wasn't up to sitting any longer - because of my "allergies."

And now that Mom is gone, I'm having a really hard time convincing myself that the mother I love and the mother who controlled me and abused me are the same person. I am trying to rationalize and say, "Can't we be happy for Christmas like we always are, and then go back to having no contact until the next year? It works for a lot of families!"

But I know that it doesn't work that way. While Mom might be able to put aside her feelings and not feel anything, I do feel things. And feeling happy with my Mom for one occasion would make me wonder why she can't be happy and "normal" all the time. Because that's not who she is. She is my mother, and because she refuses to accept that she is a problem or seek help for that problem, this is the situation I am in. I have accepted that. I was angry, and sad, and went through all the stages of grief - even bargaining, and now I am much closer to acceptance. I accept that my mother is who she is and my secret storm is no longer secret - and not really a storm anymore.

I think I'm at that point when I get to see the rainbow.

Falling Apart

I didn't talk about yesterday here, but yesterday I was Wonder Woman. I babysat (got off early, which helped), went to the hobby store to get Halloween decorations, walked 1.5 miles on the treadmill, decorated my place, did the dishes, took out the trash, and generally was awesome.

Today I am falling apart. I babysat, which went well, except for the coughing spell from the study drug I am on. I will talk more about the study drug later when I have made up my mind what I am going to do about it. That is one issue that weighs heavy on me tonight. I want to do the drug perfectly - like I did in the Cipro study, but this drug causes coughing fits. Not normal coughing fits. These are doubled over, my lung being hurled from my chest and into the next state kind of coughing fits. Then after I retrieve my lung from the next state, the coughing starts all over. And NOTHING helps. Not water. Not food. Not cough drops, nor steam nor any other thing you can think of besides the dreaded - dun. dun. dun: COUGH SYRUP. Cough syrup is sort of a forbidden thing among CFers because the goal is to cough out the gunk. But the only thing that stops my industrial sized cough is the industrial strength cough syrup.

But enough about that. I said I wasn't going to talk about it until I made my decision. But the coughing. The never ending cough that lasts all day and night and makes me cough while I'm coughing? That cough? It gets in the way of my life. Like today. I feel like CRAP. I wanted to go to my mandatory meeting - but I didn't. I wanted to walk on the treadmill - but I didn't. I wanted to not lie on the couch in pain all night - but I did.

And maybe some of this is because I had to skip accupuncture this week. I'm a big fan of my accupuncture and it's real just like fairies and Santa Clause. So don't show me any studies you found about how it really doesn't work. It does.

Part of me - well, most of me, can't wait until my brother gets here on Friday. He can do the laundry, and get milk and tomatoes, and help me clean.

Days like today make me feel like I'm falling down a never-ending staircase and I can't find my footing. Every now and then a foot will land correctly, but I can't stop the tumbling. When my brother or my dad arrive it stops the tumbling and allows me to step off the staircase. It's a little savior.

And I sure can't wait until that savior arrives on Friday.

Wednesday, September 30, 2009

Way to Go

Here are some thoughts for today:

Way to go, Wellsphere, I do not live in California. P.S. How do I fix that now? My best guess? Move to California.

Way to go, Charter Communications, for charging me double what my normal payment is - which is way too high in the first place. I'll be calling you later today.

Way to go, Chemistry.com for introducing me to some of the worst people on the planet AND charging my credit card without my permission for another 6 months of misery. I'll also be calling you later today.

Way to go, Post Office. You suck. A certified letter comes and gets all screwed up. And now I have to go to the post office to pick it up because I happen to not be home when the mail arrives.

Saturday, September 26, 2009

Changes

I want to make changes to this site, my blog. I want to do a banner and make the background customized, and other things.

I have been chosen to be a featured blogger on Wellsphere.com in the Cystic Fibrosis community. Goodness knows why I have been chosen, but I have. So they feature my posts (all the content remains mine), and link to my blog. I figured it can't hurt, and if the guy who runs the site sees some insight in my blog that I'm missing, well that's cool.

But I really would like to update things around here, but I have no idea how. Help?

Wednesday, September 16, 2009

Weight Wars

When I was in high school and college I looked like I had an eating disorder. People would come up and ask me straight out if I was anorexic or bulimic. I would tell them no, but that I have trouble digesting my food because my pancreatic enzymes don't make it to my intestines so I have to take them in pill form. I had people come up to me and tell me how much they wanted to be thin like me. All this time I was struggling to maintain my weight and trying to gain weight if I could. In college, just to maintain my weight I had to drink Scandishakes - 600 calories in 8 ounces. I hated doing them, but I had to get my extra calories somehow.

Fast forward several years and here I am, overweight. For my height, I am overweight. The chart at the doctor's office told me so. I need to lose weight and I don't know how. Blah blah blah eat less, blah blah blah more exercise. I know that. But does it work?

I am trying to maintain a diet where I eat between 800 and 1200 calories a day. I really like to stay closer to 800, but some days I am just so hungry I can't do it. I also like to reward myself with food when I am proud of myself - and if I eat just 800 calories and exercise, I'm proud of myself.

I'm also proud of myself for organizing the bathroom and working on my closet. I'm proud of myself for working on my book. I'm proud of myself for staying awake most of the day. For only needing one two-hour nap. I'm proud that I took the stairs at the parking garage at the hospital. I'm proud that I can exercise. I'm proud of myself, and normally I would reward myself by eating. Going out to eat, or eating lots of ice cream. But that ruins my diet. Silly circular mess.

I am currently organizing all my music files. It's made easier by a program I found that renames the weird ones (I have THOUSANDS of mixed-up, incorrectly named files). And the same program will find missing album art. I am in love with this program. Now if I could only find one for my email. I don't want to sort through all the thousands of emails I have waiting for me in Outlook.

And besides my weight, the other thing that is bothering me is my feet. They are dry and crackly and icky. They make me feel old and diabetic, so I am treating them with heavy moisturizer and clean socks.

I feel I really don't have that much to worry about - my weight and my feet are what's bothering me. Big friggin' deal. My lungs are healthy! I feel well enough to stay awake most of the day! I can exercise! These things are nearly miracles, and yet here I am complaining about how I can't lose weight or make my feet smooth.

I guess I'll just keep plugging away at the weight war. Just like most other Americans. But I am going to WIN this war, I don't care how long it takes. I swear I'm going to lose that weight, just to prove I can. And so my jeans fit again. I don't want to have to buy more sweat pants.

Monday, September 14, 2009

Happy 11 Months, Mr. Big!

I love you even when you are covered in blueberries!!!



Mr. Big turns 11 months old today!!!

I can't believe how big you are! I love watching your personality develop. Your parents are going to have a little trickster on their hands - but I love it. I love when you do something you think is funny. I love when you make you laugh. I love when we make you laugh.

I love watching you learn to walk - but honestly, it's okay with me that you prefer to crawl for now. That means you're still little a little while longer. I love hearing stories about you from daycare! You're in the toddler room now, and you're the biggest kid there! That's why you're my Mr. Big!

Recently, you tore up napkins underneath the table in your parents house - and I thought it was HILARIOUS. I find you hilarious. You're amazing - and every chance I get I tell someone about you. The things you are doing now, the things you like to eat (which is everything), the things you like to do best, and the ways you drive your parents nuts (like banging your head against stuff. Keep that one up kiddo, haha, and you're not gonna get into Princeton like we talked about).

I love you so much! Happy 11 Months!!!

Friday, September 4, 2009

Room Service


I love hotels. I always have. I find something romantic about them - it's something new and exciting and also comfortable.

I'm laying in a king bed at a hotel in Springfield, IL. I know, you're jealous because I'm on your dream vacation to Springfield. Mine has elderly, hard of hearing, and senile grandparents as a bonus!

Usually I would stay at their house like normal, but my grandmother doesn't own a pillow that doesn't have feathers, and down causes me to stop breathing. Pretty serious allergy. And it's really dusty there.

So here I am in a king bed in a hotel room. Poor little me. Did anyone count the number of pillows on this bed? It is six. Heaven.

Sometimes, I think I want to live in a hotel. I only cook with the microwave as it is, so that's not a problem. I think eventually I might miss my stuff. And the clothes I couldn't fit in a suitcase - I would miss them. And my shoes. And the Internet. I would miss my desktop and the now reliable, installed by my brother, internet.

So maybe I'll just order room service and enjoy my time here. But I'll definitely be looking forward to my next hotel stay!

-- Post From My iPhone

Friday, August 28, 2009

To my millions

Dear fans and friends,
My Internet may or may not be dead for a long time. I hate typing on th iPhone. Especially long posts. Blarg.

So while I'm thinking of entries I'd like to write, I hope I don't forget them before my Internet works again.

Love,
C


-- Post From My iPhone

Thursday, August 27, 2009

Your Voice

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 without talking to you, first. I talked to you multiple times daily. I used you as a crutch to limp along. As I am finishing my first round of home IVs without you, I am free. I feel alive and happy. I know I can do anything - even if I have to do it without ever hearing your voice again. And that knowledge and belief in myself should be enough to allow myself to write freely about things I need to write about.

But most days, I would rather hear your voice, so I don't write honestly.

Wednesday, August 26, 2009

You Are My Sunshine

Dear Internet,
You are my sunshine, my only sunshine... Not really, but it is severely nice to be sitting at my desktop computer using the INTERNET. The one that connects to the outside world and does things OTHER than bring emails to my phone and send twitter messages FROM the phone to the internets, where I ASSUME they are published. But only if I'm in a good reception area.

My brother keeps telling me I need a new modem, but I SWEAR I'll keep limping along with this one until I can no longer get it to work EVER, and then I will buy a new one. Then I will unpack it, and glare at it because it is not working until my brother comes to plug it in. Mainly, because it is dusty under my desk and why get dirty when I don't have to? Once Darin plugs the new thing in I will jump and giggle and probably post about my new found ability to do all sorts of things on the internet, like listen to music, download it, watch TV and movies, and read all those Mommy blogs I have been missing.

Kate Gosslin, you may just have to be my connection to the Mommy Blog world until I get my internet-skilled brother to hook me up again, literally. (If you didn't know, Kate Gosslin is going to host a week of The View. Why? I don't know. But I'll be watching! But I always wonder where those 8 cute kids are when she's all over TV.)

This is all I've got right now. The INTERNET IS CALLING.... mainly that part that fills my brain with new music!

Thursday, August 13, 2009

This Week

This is going to be one of those boring posts where I talk about my life.

I love living my life. It's a really fun thing to do! Have you ever tried living your life? I hope you're having as much fun as I am!

Now I will stop talking like a Dr. Seuss book.

This week I worked 17 hours. Can you believe it? I did it. I survived. I'm also talking as if this week were over and it's only Thursday. Today I took a total day for myself and stayed in my PJs all day. I took naps when I needed it and ate stuff. I didn't overeat- I'm just getting the hang of this "diet" thing, AND I'm starting to lose weight, so I don't want to jinx any of that.

I really enjoy that the hardest part of my day is deciding what to eat so I stay in my "allotted number of calories" for the day. I really miss my friend Eab at this point - she was really good with this stuff. She knew Weight Watchers like the back of her hand. I could use her guidance. Except I don't cook. So that limits my foods, somewhat. Fruit bars are great. And cheese sticks.

I feel like I let down a friend tonight by not showing up for something - but I also feel that he is a big boy and can survive on his own. How do you think I got to know everyone there? I showed up by myself often - because at the time I couldn't get these exact friends to go with me. And I really needed a night at home.

My mother called today to yell at me about something. I didn't get to the phone on time, so I just got the voicemail. I'm really glad I didn't answer the phone. I feel bad enough, and all I heard was the voicemail. I think I have a "no answer" policy if my mother ever calls again. And she will, if only to yell at me more. Thus, the "no answer" policy.

Lately, I feel like a real human being. I feel successful and capable, responsible and self-confident. All those things everyone has seen on the outside for all these years, I'm starting to feel that way on the inside. Some of it is the treatments I'm going through to help my pain issues, and some of it is I'm rid of most of the anxiety my mother causes. Yes, I just admitted that in a blog entry. On the Internet. For the WORLD to read.

Now if only I could write about it in my personal journal, maybe I'd make some leaps and bounds in progress.

So things are good. My main complaints are that food has too many calories, and the guy upstairs makes too much noise. By the way, if you happen to be the guy living above me, your music is too loud. Your surround system is TOO LOUD. Your patio door is TOO LOUD. Your shower makes it sound like the ceiling is going to cave in on me. Your subwoofer shakes things in my house. You go to bed too late. Your noise keeps me up at night. And in the morning, if you could NOT walk while you get ready for work, that'd be great. Your walking wakes me up. Thanks.

NCIStealing my Life

NCIS is one of the few crime solving dramas I haven't watched with obsestivity. I now have USA network in HD, so I am obsessively DVRing all the episodes they play.

Right now I'm watching an episode where Abigail Breslin ( the genius actress from Little Miss Sunshine) plays a blind girl. This is one of the best episodes of television I have ever seen. And it was worth blogging about.


-- Post From My iPhone

Tuesday, August 11, 2009

Up too late

So I'm up too late. I should be sleeping because I babysit at 9am. But while I was in the shower, I was able to work on extracting a booger. Yes, I'm talking about boogers now.

I could feel this booger causing pressure, but I didn't know how to get it out. Rinsing my nose hadn't budged it, so I decided to dig around and mine me some boogers.

I was pretty sure this booger was in that little space straight back in your nose - the space you can barely reach with your little pinky because that's the only finger that fits. Well this booger was there - but so far back I could barely touch it - and I've got long nails.

So it's me, versus the booger. And when I say booger, i know most of you are thinking the consistency of snot. But in order for something to cause that much pressure, it's more the consistency of rock. So i'm rooting around poking at the pressure-causing rock booger and I'm not getting anywhere. It's frustrating. I've been blowing out my nose as hard as I can to see if it will move forward just enough for me to grab the edge so I can pull it out, but this booger ain't budging.

I stomp my foot in frustration as I blow out my nose, and when I stick my finger back in to continue my vain attempt to dislodge this thing I notice it has moved! Not much, but I can almost grasp the edge to pull it out. So this time as I blow out my nose as hard as I can, I jump up and down, and what do you know? I free the damn thing. It shoots out my nose into my hand.

I am so proud- and my head feels better too! Because I'm so proud, and just to show you how incredibly large this SOB was, here is a photo of the biggerst booger I've ever gotten out sans surgery. Enjoy.




-- Post From My iPhone

Monday, August 3, 2009

The Can Life

Today I did a load of laundry. The entire load from start to finish. And yesterday I finished a load I started Sunday. That is two loads of laundry in three days. To me, this is a sign of my new life. I am calling it "The Can Life" because I CAN do anything I need to do.

This is not about me striving to do all the things I want to do - although, there will be a lot of that still. This is about me striving to do the things I NEED to do. Pouring my meds on the day they need to be poured. Emptying the dishwasher when it's done. Loading dishes after every meal. Doing the laundry when I have a full load to do. Showering. Making my bed. Cleaning. Fixing meals. Exercising. Living my life successfully and happily.

"The Can Life" is about me finding who I am by doing things. I will take out the trash and send in the parking ticket for review because those things need to be done. This may fall apart a little when I get sicker, but hopefully not too bad.

I am exercising because I can. I take the stairs because I can. I walk up and down State Street with my friends on a Friday night because I can. And I only have to ask them to slow down once or twice - and it was because my feet hurt.

I feel much better about myself and my life. Why? Because I CAN!

Monday, July 27, 2009

"They Say It's Your Birthday"

"Well it's my birthday, too, yea."

It's my 23rd birthday.

Usually, I don't like my birthday. That's not true. I love my birthday. I love celebrating that I have beaten cystic fibrosis for another year. I love celebrating my life. If it were up to me, I'd have a huge blowout EVERY year. Such as it is, I don't celebrate by birthday ON my birthday in the last few years, because my mother refuses to wish me a happy birthday.

It started when I was 17. She canceled my birthday. She didn't cancel a party or something grand we had in the works to celebrate. She canceled the actual day. She didn't speak to me all day and refused to wish me a happy birthday.

And then the next year, when I turned 18, she did it again.

Last year I thought we were good. My parents came down the weekend before my birthday and we went out for a birthday dinner. I'm pretty sure she wished me happy birthday at the dinner - but before they left, she got into a fight with me (because it's not usually accurate to say that WE got into a fight. "she got into a fight with me" is a much better wording). So she had an excuse not to wish me happy birthday on my actual birthday.

This year, I'm not even waiting by the phone. I don't expect my phone to ring with birthday wishes. I actually plan on sleeping most of the day, because I'm tired. I will be babysitting in the evening, which is something I love to do.

If I am awake, you will find me hanging the lovely birthday gifts I got from my friend Janelle. It means rearranging a little, but some rearranging I've been meaning to do for a long time.

Also, I may take my dying Jade plant to a garden center and say, "Please fix it. I am killing the hearty plant." Then I might watch some of the wonderful crap I have recorded on my DVR. I might watch a movie or two. And then I'll probably need a nap.

Hopefully, this is the last year I will hate my birthday. Hopefully next year I will have the confidence to celebrate on my own, no matter what my mother is doing. Hopefully I will find that inner strength.

The other day I was watching the movie, "Alice," and the Chinese medicine man says, "Freedom is frightening feeling." He's correct. I've got some more freedom now, and I'm not sure what to do with it. I'm not quite ready to celebrate my survival on my own yet.

But when I'm ready, we're going to have one hell of a party.

Friday, July 24, 2009

Thursday, July 23, 2009

Mom

Here are a few things I miss about my mom.

•Watching SYTYCD at the same time and calling each other after every dance.

•Calling her while I babysit to tell her all the wonderful things the kids do.

•Telling her all the adorable things Luca does.

•Shaing our joy over good lung functions.

•Having someone to call no matter what I'm happy about - like when I walked to the pharmacy today.

•Being able to talk to someone even when I'm upset about stupid things.

•Hearing about what the dog is doing.

•Her hugs.

I miss my mom.

Tuesday, July 21, 2009

Doin' the Happy Dance

PFTs are UP! What's that you say? My lung function tests are better than two weeks ago and I haven't started the study drug yet? Yes indeed. Damn straight! 94% and 57%!!! Gotta love it!

That's right, I plan to have my PFTs go up the whole time during the study because I plan to exercize more and more - as much as I can. That's right. Workin' hard for my lungs. LOVE it!!!

Yay!!!

Waiting game

I hate that ENT is already way behind at 9am. Fuck this shit. I'll come back when I'm sick again. This clinic wastes so much of my time.


-- Post From My iPhone

Monday, July 20, 2009

My Journey With Books

Sorry for the lack of posting lately. I'm on a spiritual journey and it's taking me many places.

My journey started in Italy - a place I have actually been. Then it took me to India and Bali. (that was in "Eat, Pray, Love"). In that book I discovered that I have a soul that I need to look after and I need to actively take care of it or it will wither. And the same goes for my happiness. If I don't actively pursue happiness, it will never find me on its own. I learned many sage lessons from that book.

Next, I went into a world where Medicine and The Law crash into each other. "My Sisters Keeper" was a wonderful story. I related in many ways because of the medical procedures being done, but I couldn't relate at all to being used to save my sibling. I wonder if that's how my brother ever feels. He wasn't conceived to save me, but it was partially (or mostly, depending on who you ask), because I was sick. My mother wanted a healthy baby.

Next, I took a trip through the lives of twins with cystic fibrosis. "The Power of Two," started slow, but I really ended up enjoying it. I got to read about treatments and procedures that were common before I was born. I also got to read about attending CF Camp. Before the Foundation became Uber strict about cross-contamination rules (mainly over hyped fears - because the reward far outweighs the risk), there were summer camps just for CF kids. When I was really young - about 4 or 5 they kept telling me that as soon as I got old enough I would get to go to CF Camp - and I was so excited. A WHOLE WEEK to be with people just like me!!! And my year finally came. I was old enough to go to camp... and they shut the camps down. Huge dissappointment.

Anyways, I'm working on my spirit and myself not just by reading, but by being in therapy and really thinking about myself first - which sounds terrible - but it's something I usually don't do. I'm usually so worried thinking about and trying to make sure other people are happy, I don't get around to wondering if I am happy. Now that I have no mother, I don't have to worry whether she is happy or not.

But I wish she were happy.

But I can't make her happy - I can only make me happy.

Super Masochistic Bob

Here is a spoof of Supercalifragilistic... I personally LOVE it. I find it truthful, honest and fabulous. Just as a little background, Bob Flanagan wrote a book (and eventually there was a documentary) called Supermasochist. He uses masochism to deal with the pain of his CF. And I feel like, "Hey man, do whatever you gotta do to get through it."

Here's to Bob. He lived to be forty-three in an era where the median age of survival was about 19.

Friday, July 17, 2009

I Wish


I can check my blood sugar anytime I want, but many times I want to check my O2 level. I feel funny and light headed and I'm pretty sure my pulse ox is low, but I have no way of knowing for sure.

-- Post From My iPhone

Wednesday, July 15, 2009

Happy 9 Months!!

I'm a day late, but Happy 9 Months Luca!!!


Hope it's a SCREAM!!!




Love you with all my heart, Mr. Big!!!


Love,
Auntie Carla

Sunday, July 12, 2009

Lack of Blog

I can't say it. I don't want it to be true.

So the shit has hit the fan, so to speak, and I don't want to write about it. I can't talk about it - and we know that if I can't talk about it, it must be really awful, because I will talk about anything.

I had a nightmare last night. I only remember small parts, but right now, that nightmare seems a better place to be than my reality.

I want to write all my emotions and get them out - but I don't want to admit they are real just yet.

Basically, I'm a mess.

Saturday, July 11, 2009

Hallmark

Why doesn't Hallmark make an "I'm sorry Mom" card?

The inside would say, "I can't imagine my life without you. I love you. I want us to be friends. We don't have to see eye to eye on everything - we just need to not fight about our differences."

"I'm sorry I can't support myself and at times I really need your help with everything - from dishes to bathing. I'm sorry that you have a sick child. I have no idea what that pain feels like. I only know the pain of being the sick child."

"I'm sorry about Mother's Day and your anniversary. If I could, I would do something like I did for your 25th every year. But I can't afford it and I'm not that creative."

"i want to be happy. I want you to be happy and satisfied with life. I want us to live our lives to the fullest. I wish you could live your life instead of waiting for me to die."

"I love you, Mom."

Why doesn't Hallmark make that card?

-- Post From My iPhone

Monday, July 6, 2009

Fat

I am fat. And I am okay with that for now.

I am going through a ton of rough things right now, and I'm okay that I'm eating my pain. My plan is to fix myself emotionally - which is going pretty well. The book, "Eat, Pray, Love" has changed my life. I read it when I really needed help and guidence and it was the perfect thing to read while my world was falling apart.

I'm slowly putting it back together, and hopefully it will be better than ever before.

Thanks.
Carla


-- Post From My iPhone

Wednesday, July 1, 2009

Appointment Scheduling


Today I showed up for my 9 am appointment and was told it was actually scheduled for 10 am. I know I wouldn't have done this because I originally had a 10am appointment across campus. And I have an 11 am appointment Hella far away from where this appointment is.

I hate scheduling appointments.

I now will sit in this waiting room freezing my ass off when I really want to be in my bed. Did I mention the waiting room smells like severe BO? Because it does.

I love trying to fix my crazy.

-- Post From My iPhone

Sunday, June 21, 2009

Firetruck

Dear Firepersons,
Would you mind turning off your lights? They are all blinky and keeping me awake. You probably don't know, but I'm crazy. My PTSD is bad and I don't need all your blinky shit keeping me awake - especially since I am also in a fuckton of pain from my sinuses.

That's right. Less than a month after surgery and I have unbearable pain again. I know that this is what Percoset (I can't spell; quiet y'all) is for. I just don't like to drive while I'm taking the strong junk, and my little bro is only here for a couple more weeks. The fact he is trying to end up a productive member of society by going to college is totally interfering with my plan to have him take care of me and be my personal assistant for the rest of my life.

I'm also having some trouble telling what's real and what was a dream. Like whether or not my mother grew to about eight feet tall and demanded $25,000. This whole reality thing can be soo confusing.

So please turn off the blinking outside my house. That would definitely solve all my problems. Thanks.

Your Friend,
Carla


-- Post From My iPhone

Fathers' Day

In my world, some things are much more important than others.

I prefer the words in the card and the sentiment they bring over the present the card came with.

I would rather have great company and great conversation than a night in a club with people I don't know.

I love having unwavering support in all that I do and a best friend who always knows how to cheer me up when I feel down.

I love living in the moment and being silly. A silly companion is better than a serious one.

I love to travel and to travel with someone much wiser than myself.

I love to laugh.

These are just some of the many reasons why I love you, Dad!
Happy Fathers' Day!

Tuesday, June 16, 2009

Brain Soup Bondage

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 those of you who were at New Years at Eli’s, Boy Who Made Me Cry is a trigger for me because he was following me around when I was still being stalked by my high school teacher. The melt down at New Years was mainly because he is a PTSD trigger and I couldn’t stop flashing back.

First I should explain why I have PTSD. It’s a complicated mess. I was stalked by my history teacher, my mother is abusive, and all the medical things that have happened to me have rolled into one crazy (haha, crazy.) case of PTSD. Anxiety is a big part of my PTSD, and I tend to deal with it with anger and manipulation to try and avoid having flashbacks. I go into survival mode. It’s what I do.

I'm going to keep this internet-anonymous, but I'm not going to pretend that ya'll won't know exactly who and what I'm talking about. I'm so fucking tired of trying to explain why I'm a crazy bitch. I have decided to embrace my crazy, mail it to my friends and post it on the internet.

Why should I deny my inner self the chance to shine? Why try and be a perfect dignified person when you really are a lunatic? Now maybe I'm the good kind of crazy - and that would be wonderful - but I know that rolling around in my skull are paranoid and obsessive thoughts along with a whole ton of sinus goo. And I'm hoping that combination makes either brilliance or at least a great new soup.

I have anxiety. Post Traumatic Stress Disorder has the tendency to take over my brain and make me bat-shit crazy. I'm severely sad - this is usually called depression, but I prefer the term 'severely sad.' What can I say, I'm a fan of the alliteration.

I am medicated, and I would perform sexual favors to keep myself on those medications because you don't want to meet un-medicated Carla because she is scary. Let's leave it at that.

I'm going to right now try and describe what PTSD does to my brain. PTSD takes my brain and puts it in bondage gear, which would be all and good if we were practicing safe BDSM. Unfortunately, Brain uses the Safeword and PTSD refuses to stop the torture or cut the bondage ropes. That is the easiest explanation. When the PTSD creeps in I can’t run or hide. It gets me. And I fight so hard with my own brain to make it stop. I get so tired of fighting with my brain I tend to spill over and pick fights with ya’ll. And I’m sorry for that. I know several of you have been the victim of the “Late Night PTSD Rant.” My brain takes anything that bothers me, picks it apart, puts it in email form and hits send. OR even better is when I talk late at night on AIM and you become the victim of a live fight.

Ya’ll know me. You have known me a long time. I LOVE people. I don’t put up with bullshit, but I try never to fight. That is the real me. Causing problems among my friends is the last thing I want to do. I discussed what has been going on with my therapist and we have agreed that I am fighting for my survival. When the PTSD flashbacks start I just want to stop the world and get off. I may seem extremely controlling – and that is me trying to prevent situations in which I know I will have problems. I have begged certain people for help with this, but it really hasn’t made them understand. Or they understand and are reluctant to really help. The one true solution to make me better is to keep me away from my triggers. If I am nowhere near a trigger I am less likely to flash back.

This makes things complicated.

All I can say now is I’m doing my best and I need your support. You all are a lifeline for me, and if I don’t have you, I don’t know what to do. I love you all very much. I hope I have explained this in a way you can understand. Feel free to let me know if you have any questions.

Love,
Carla

Sunday, June 14, 2009

Crazy

Patsy Cline would be so proud. I'm that Crazy.

Being crazy is harder than being a CFer. Can I give up now?

YOU love me, right, Internet?

More about being crazy later, when i'm feeling less crazy.


-- Post From My iPhone

Happy Birthday Baby

Happy Birthday Luca!!!

I know your mom and I count your birthday differently, so in my mind you turn 8 months old today!!!

I can't believe you are so


big! I love watching watching you crawl and pull yourself up on things!! And yesterday you had your first gelato! Big deal for me!

I love you so much kiddo!


-- Post From My iPhone

Twitter DOWN

Twitter from my phone is down, so I'm going to post some observations from the day.

*sitting with friends, eating ice cream, and watching fireworks is one of the best things in the world.

*the town should have called their event something other than "big event"

*in my ideal world, I would get married and we'd live with my favorite couple and their kids. I think it would be great to have 4 adults live in the same house.

*I'm sleepy.


-- Post From My iPhone

Friday, June 12, 2009

Dear Friends in short

Dear Friends,
I love you. I love you more than you know.
And right now I'm having problems with my PTSD, and my mother. I will give you info individually about my mom.

I need you to know that I need your support more than ever right now - and I know that a lot of stuff I've done recently probably seems out of character and mean. I'm sorry for all of that, but the short answer is PTSD. It is awful.

I love you and hope I can still count on you guys.

Love,
Carla


-- Post From My iPhone

Tuesday, June 9, 2009

How are you doing?

People often ask me how I'm doing, and I'm never quite sure how to answer. But today I'm going to answer.

My CF life is going well. I'm pretty healthy and feeling good. I also have clean sinuses!

My mental health isn't going as well as I would like it to. I would like to stop picking. I would like to be able to control my emotions better and be in control of my life. I want to stop hurting myself. I NEED to stop hurting myself.

Thank goodness for getting in to see my therapist tomorrow morning!


-- Post From My iPhone

Monday, June 8, 2009

WANTED: Emotional Mother

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, worthlessness, and the urge to hurt myself, so my psychologist is going to be in business for a long time. Maybe the other way to help myself is to surround myself with strong women who believe in me.

I always look up to strong, intelligent women. Women who are caring and loving. I have always desperately been looking for a woman who will take me under her wing and be my emotional mother. That is what I need. A mother who will support me emotionally and make sure I know that I AM good enough. Just being me is good enough.

My mother makes me doubt myself to the very core of my personality - the very essence of who I am. She takes a strong, confident young woman and tells her she is worthless. She tells me that I don't care about her and treat her like shit. She tells me I am mean to people - my brother, specifically - and I am a mean person who only thinks about herself. She makes me feel guilty about anything and everything that has to do with money. I can't and won't discuss money issues on a public blog, but I can say that money shouldn't be an issue, but it is. I am lucky to be in the situation I am in, and I am grateful to be able to do the things I do, but my mother makes me feel guilty and says I am taking advantage of her and I'm not thankful.

Everyone tells me none of this is true - I'm strong, and responsible, and honest, and a good person - and I try to believe it because deep down somewhere I know it's true, I think. I want it to be true, but my mother makes me doubt myself so deeply I don't know who or what I am.

I do know that I'm not living up to her standards, or the standards I have set for myself. I want my place to be more organized. I want less clutter. I want to have flawless skin and I want to not hurt myself, but those are things I have trouble with. I want to do my own laundry and dishes and cleaning, but I can never find the energy.

I want to be a productive member of society. I want to support myself and live on my own and afford everything I need without any help. Those are standards I am not living up to. Those are a big issue for me because I know I am going to be stuck under my mother forever, and she will be able to have this control to make me feel bad about myself forever.

I am a bad daughter because I didn't get around to getting my mother anything for Mothers' Day. I tried and tried to find something online to have sent to her while I was in the hospital (I was in over Mothers' Day), but my dad talked me into making her a card instead of buying something. I made a card, but it wasn't good enough. My hand-made card with real heartfelt sentiments isn't good enough. My mom didn't even keep it. I think it's among my discharge papers.

I am a bad daughter because I am skipping Breakfast at Wimbledon this summer. I usually go home so my mother and I can watch the Wimbledon finals together, but this year it is the last weekend before two of my closest friends move to Seattle, and I want to spend that time with them - because they are moving to Seattle. And because I'm choosing my friends over my mother I am a bad daughter.

Even other people notice how horrible I am. When I was in the hospital, my mom and my nurse were talking about baseball and I rolled my eyes or somehow indicated that I was bored, and my nurse said, "The world doesn't revolve around you, Carla." And I thought she was joking, but now I'm not so sure.

My world is blurring and I don't know what's real and what's not anymore. I don't know who I am or how to go on because I know nothing will ever be good enough. I've stopped working on my book because I had my mother help me with a little and she didn't like it. This was more than a year ago, and I haven't touched it since because I'm terrified the whole thing is horrible. j

One of my goals for the summer is to finish my book, but I'll probably fail at that too, because it's what I do best.

I'm drowning in my own self-pity and self-doubt. I know I need a swift kick in the pants to bring me out of this - and usually I can do it for myself, but what if I can't this time?

I'm placing a Wanted Ad for a new Emotional Mother. Apply within.

Labor of Love

I have mentioned my brother, Darin, is staying with me. He didn't get a summer internship, but has a camp counselor job later in the summer. Until he leaves, he is living with and taking care of me. Before my sinus surgery we did some cleaning and laundry. By "we," I mean "he did the work and I barked the orders."

I barked out where to put away all the things I had in my suitcases, where to put clean laundry, how to load the dishwasher, how much water to put in my glass, and how to pour my weekly meds. I sure will miss him when he leaves.

The main reason I'm writing about my brother today is because he's amazing.

My surgery was figuratively and literally painless. I checked in about 1/2 hour early and was taken to my room right away. Darin and Mom were both very good, but especially Darin. I'm used to Mom taking care of me and doing things for me before and after surgery, but I'm not used to having my little brother there.

Darin did wonderful things for me. He and I looked at the fail-blog to keep me laughing before my surgery. My nurse Caron was absolutely brilliant and we kept her laughing, too. Because I'm that funny. I got a dose of Valium, and have decided that it is totally worth it's weight in gold. If I ever become a drug seeker it will be for Valium. Man that stuff is grand.

I was taken to surgery and then woke up in recovery. I was angry in the recovery room because I was having a hard time waking up. Finally I woke up and was taken back to my room. There we got word that Pulmonary had said that I would be fine to go home same-day (Let's not talk about this decision, because I don't want to get into all that). I finally was able to get up and walk, get dressed and go home.

Before I came home, when I was waking up Darin was feeding me ice chips and my grape slushie. He was helping me with everything - including walking to the bathroom and changing from my gown to my clothes, and then he even blotted and removed the grape slushie that stained my white sweater. He's my Healthcare Diva.

I wonder how much money he'd have to be paid to stay in Madison after graduation. I don't know what I'll do if he ends up in California, or worse, abroad. I guess I'll pack my bags and move with him. He'll be my Will and I'll be his Grace.

I have the world's best brother. He even is willing to give me a bath when I'm too sick to do it myself. And I don't know many brothers who would bathe their older sister. He is, however, afraid of my breasts, so he makes me wear a swimsuit. Whatever, either way, I get a bath and time to jam to my tunes with my brother.

Saturday, June 6, 2009

Surgery

I had sinus surgery :-) yesterday. Felt better immediately and got to come home same day! Now my anesthesia is wearing off completely and I'm on a pain med. That is all.


-- Post From My iPhone

Sunday, May 31, 2009

Frustration Overload

This is obnoxios. I don't mind posting from my phone in a waiting room or while on vacation, but when I'm in my own home my own computer SHOULD have the internets working! I miss using a real keyboard. My bro was nice enough to allow me to send a way overdue email with his compy, but I have so many things I need to do on mine.

Speaking of frustration, this week is going to be a giant ball of frustration. Today I slept all day. I was awake every few hours, but I had on the All-Day Golden Girls Marathon and I slept. The pain from my sinuses is too much to bear, so I try to sleep through it and my brain just shuts down. This is really fun. Try to get anything accomplished when your brain funks out on you. It makes things interesting.

I can't handle anything beyond the pain. This is the time when I get so overwhelmed by the pain and pressure that I get ornrey. I pick fights and like to throw things. Nevermind the fact that I also like to hurt myself. That's something I'm working on: better ways to manage pain.

I need to figure out how to get my brother to organize my crap this week. This is only challenging because he is somewhat challenged in the common sense area, and I am somewhat currently challanged in the staying awake to tell him what to do area. It's going to be an interesting week. All this has to get done by Thursday so my mom and I don't end up physically fighting in the OR holding room like we did last year.

::throws Kleenex box::

I should sleep now. If you've got some kick-ass pain killers, let me know.


-- Post From My iPhone

Saturday, May 30, 2009

Wouldn't it be lovely?



It would be very nice if my internet at home worked. I have this huge desktop that is currently a colorful paperweight because I can't get the Internet on it. There are things I would like to do that are so much easier from my desktop than from my phone. *le sigh*

The goal for this week is to get my house organized so that I can focus my energy on finishing my book. I just want to get it done and published. And I'm thinking of doing a video blog on CF. And I want my brother or someone to develop my new website (not that I had an old one).

I'm looking forward to seeing what I can do.

We need to keep an eye on cfvoice.org because in a couple days their whole site makeover should be done, and soon after that my podcasts should go up.

I have been told I should do my very own podcast by a podcast master, but I'm not confident enough. I don't know what I would talk about.

But it would be so lovely of my home Internet were working.


-- Post From My iPhone

Thursday, May 28, 2009

Life is Learning

Life is a learning process. If you're good at it, you will never stop learning and growing. If you happen to stop learning, I have no idea what happens but I'm sure it isn't good.

In my short 22 years on this planet I have learned more about a lot of things than most people have the opportunity to learn about in their whole lives. I know how important it is to tell people how much I love them. I know how important every day is and I try to do something productive every day- even when I feel like sleeping all day. Even when I do sleep all day I try to have at least a few minutes of productivity.

I know how precious life is and how not to take many things for granted. Time is a terrible thing to waste, and I try not to let petty things or bull shit take up my time.

I also know who I am and what I'm looking for in life. Most of all I want someone to sit next to my bed. I don't really care who it is - ideally a significant other, but anyone will do. As long as they sit by my bed and hold my hand it will all be good. I don't want to face the scarriest moments alone. That is my greatist fear - to have to be sick and alone.

Do you want to be my hand-holder? I am accepting applications.


-- Post From My iPhone

Politics



I try to stay away from politics on this blog because that us not the mission of the blog, but I need to say a few words.

Dear Rush Limbaugh,
Rush, my dear friend, there us no such thing as 'reverse racism'. Racism is racism. Please stop talking. You make yourself look like a fool. And take Ann Coulter with you. Sew that woman's mouth shut or something.

Love,
Carla

That is all.
-- Post From My iPhone

Roommate


I have a roommate for a month. I don't know how this is going to work because Ive never had a roommate before and I don't like to share. Especially when it's my television. I enjoy relaxing and watching shit on TV, thank you very much!

When my mom stays here, that's what we fight about: the TV and who has the right to control it. Nevermind that I have two other televisions in my house, we fight over the livingroom TV.

That's the real reason I'm nervous about having a roommate - what if he doesn't want to watch what I want to watch? I guess I'll just force him to watch it anyways. I can do that; he's my little brother.

-- Post From My iPhone

Tuesday, May 26, 2009

End of a Trip

So here I am in the New Orleans airport with more than an hour and a half until our plane will board. There is the gate check tag I need to get when an agent arrives at the counter, but other then that, I'm all set to go.

Once again we had to buy a bag to get all our junk home - man I love traveling with Dad! It's just a small tote bag, so it's not a huge deal.

Sunday night we went to visit the Greshams in their home on the Cane River. Tom is an old friend of my dad's from childhood, and that is where I found out that Zebras are for sure white with black stripes. Tom and Pat had a zebra skin rug on the floor. A REAL zebra that Tom probably shot himself. He is the host of the radio show "Gun Talk."

Monday we went to Avery Island on our way from Natchitotches to New Orleans. If you follow my Twitted you know I saw me some gators! Real live gators just a few feet from me!!!

And yesterday afternoon and today we explored New Orleans. What an amazing place! We at charbroiled oysters last night, had a po-boy and then pie. Then we went to Cafe du Monde and had beignets. I was so full Harold, the baby in my tummy who appears when I eat too much emerged with vengence. I think today Harold is still noticeable.

So here are photos from the iPhone. Hopefully I'll be posting some great ones from home too.

Dad near the Buddha on Avery Island




Flowers




GATORS!!! And a turtle.


-- Post From My iPhone

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