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


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.


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.
Clean the couch and ottoman.
Move the big round chair.

List of things I need to do/get:

New shoes.
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.


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.

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