Tuesday, May 25, 2010

Happy Golden Birthday

Two of my FAVORITE people on the planet have had golden birthdays recently.  I feel bad because I think I forgot to say awesome things on my blog about my awesome brother on his golden day, so here are the awesome things about TWO AWESOME PEOPLE.

Happy Golden Birthday, Darin (a little bit late).  I know we went to Vegas, and I threw you a party here, and I told the world on Facebook how awesome you are - but I didn't say anything nice here.  And this is the place you never read, so it's SUPER important.  Right.

My brother means the world to me.  He's one of my very important rocks.  He's brilliant, and funny and can be amazingly flamingly gay.  The last one is one of my favorite qualities in my brother.  That, and that he hangs up on me on the phone on a regular basis.  Seriously.

If you interrupt his thought at all he gets mad - which can be funny.  But overall, he's sweet when he's told to be.  He does my laundry when I tell him to.  He pushes my wheelchair when we travel.  He makes me laugh - and he could make you laugh too.  And if I told him to, he'd come here to read the nice things I've just written about him - because he's that cool of a kid.

I'm unbelievably proud of him.  Going to college - going to FINISH college!  An internship! A possible job!  Things I couldn't do.  And sometimes he cares about the world too!  When we were young he was obsessed with turning the lights off to conserve energy, and last year (on his birthday) he had a big exhibit of photos and some speakers for an event on Family Diversity.  I was so proud I cried.  

I Love You, Dar-Dar!  Let's go to New York sometime, k? K.

And the second person with a Golden Birthday is my best friend, Kyra.  (Yes, the one whose anniversary was yesterday). 

Kyra is a wonderful wife, mother and best friend.  She is one of the most beautiful people I have ever known.  She glows inside and out.  I love that she (and her husband, Chris - I could say many nice things about him, too, but it is not his birthday today) includes me in her life as much as she does.  She always thinks of me and includes me in activities that for most young families, are just a Mom-Dad-Baby activity.

I usually eat dinner at their house at least once a week - and not just because Kyra is an AMAZING cook.  I think her turkey meatloaf might be my favorite.  OR maybe the turkey she made for Christmas.  Yes, Christmas.  I should write about that -  I didn't know if I was going to have somewhere to go for Christmas, and in less than a second Kyra said that I could spend it with them.  I loved spending Christmas with Kyra, Chris, and Luca.

Now to talk about what a wonderful Mom Kyra is.  She works full time.  And she cooks and cleans and raises her little boy and still finds time for her husband and me.  I can't believe I'm included in that sentence.  But I am and I'm so grateful for it.  Kyra has the cutest son in the world.  Luca.  My honorary nephew.  Most of the time, I leave out the honorary because Kyra is like a sister to me.  I love her that much.  I love watching her take care of Luca.  The other night they made muffins together - and I had to take photos and video, it was THAT adorable. 

I just can't say enough nice things about this woman.  She has changed my life and made it better.
One last thing about Kyra, though: She works really hard and I believe she needs more time for herself. 

So, let's have a spa day sometime soon, k? K.


You can find more about Kyra at http://kyrachris.com/

Monday, May 24, 2010

Happy Anniversary

I'm exhausted, but I just want to with a VERY Happy 2nd Anniversary to Chris and Kyra of kyrachris.com.

Chris and Kyra -
Thanks for being in my life.  You're an amazing couple with an adorable, smart, wonderful son and I am blessed to know you all.  Thank you for your unconditional love and support.  I couldn't ask for better friends/honorary siblings.   
I'm pretty sure I wrote everything else I wanted to tell you in my card/present.  ;-)
Happy 2nd Anniversary - And Many More!
"Auntie Carla"   

Craft Blog

I think I've decided (just this instant while I was watching TV) to start a CRAFT BLOG.

I've tried keeping craft binders and craft notebooks, but I'm just not very good at it. So I think I'm going to start a craft blog as a place to keep track of things I want to make and things I have made (hopefully with photos of the things I have made).  I could go back and take photos of things like the uber impressive knitting bag I made.  It's more like a knitting supply tank than a bag, but it's great. 

The idea came after I had the quick idea to make a crafting tool belt - something like an apron where I can keep my pens and scissors and glue sticks when I'm scrap booking.  I can keep my pencils and scissors and thread in it while I quilt.  I can keep my tape measure, my scissors, my pattern and pens, and my other knitting needles I need in it while I'm knitting. 

Now I just need to figure out how to make that apron-thing.  Shouldn't be too hard.  But maybe I should finish the scrapbook I'm working on and finish the thank-you cards I'm making before I start something else.  PLUS the quilt isn't done. 

I really love my crafts. :-)  Keep looking for my new CRAFT BLOG.  Soon when I have a moment to start the thing, I will.  (I'm too exhausted to do it tonight).

Is there a way to link blogs - like whenever I post something on my craft blog or my travel photo blog, a little blurb will appear in my main life blog?  THAT would be cool.  I think I'll need help from Chris for that one - he's my go-to "I'm stuck in Gmail and Blogger and can't get out" guy.  Because they confuse me. 

Thursday, May 20, 2010


I sit watching my 90-year-old grandmother prepare dish water.  I watch her and my 92-year-old grandfather wash dishes.  My father walks away because either he knows or doesn't want to watch.  I offer to help - she won't let me. 

My grandmother is sun-downing before my eyes.  And the sun is setting outside the west window.  The clouds are orange and purple.  It's lovely out there, but stormy in here.

I want to go back to this morning - back when my grandmother knew who I was and why I was in her house.  Back when she was laid back and let us do things for her.  Back when we could suggest something without yelling.  So much yelling.  No matter how loud our voices are Grandma still doesn't understand.  That was hours ago, but it seems like decades. 

My grandmother yells at my father because he's not dyring a plate correctly.  My attention snaps back to the sink as my father belligerently tells my grandmother "Well, if you don't like the way I'm doing it, then dry it yourself!" as he shoves the towel at her. She replies by slamming down the towel and yelling, "I can't! I'm washing!" 

A 90-year-old woman who can't remember how to use the stove or take a shower is trying to wash dishes because it's HER house and only SHE knows how to do things correctly.  And sometimes we look at each other and think, "She's such a pain in the ass."  Honestly, I feel bad thinking those things.  I wonder what's going on in her mind.  What is left?  If she knows us in the morning but not in the evening, what is going on inside?  I don't understand - but I want to.

I have my own, very different, mental problems.  PTSD and depression and anxiety are very different from Alziemers disease.  I have insight into my world and what's wrong with me, and I don't think my Grandma does.  I feel like I should be a support for her, a shoulder to lean on when she talks about how frustrating Alziemers is.  And I can't be that person - no one can.  She doesn't know what's wrong or that there is anything wrong. 
And I can't imagine feeling like that. 

The dish-washing episode was set off by an argument we had while sitting on the porch.  All of this over an argument about when the porch was built.  I was yelled at because ther's no way I could remember it, according to Grandma.  She said I wasn't even born yet when the porch was built.  My handprint is in the cement slab next to the handprint of my younger brother.  Those handprints were put in cement and dated when the porch was added on.  We were here.  We remember and Grandma doesn't. 

It's so frustrating to talk to someone when hard evidence - like handprints in the cememt - can't even convince them they are confused. 

Usually, we laugh off her inappropriate comments and oblige her with an answer when she asks us the same question for the third time in 10 minutes.  That's in the morning.  By evening, it dissolves into arguments that are frustrating for us - and honestly, I have no idea what they are like for her.  Because that is the nature of Alziemers.  You just don't know. 

*Written Labor Day Weekend, 2009*

Wednesday, May 19, 2010

Wednesday Thinklings

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

The end.  Happy Wednesday!

Defying Gravity on Wednesday

I want to scream from the rooftops "I'm ALL BETTER!!!" I want to dance and spin and jump up and down BECAUSE I CAN!

I am loving the song "Defying Gravity" (the Glee version). The lyrics are speaking to me - in parentheses are my thoughts/reasons why I love that line!

Defying Gravity

Something has changed within me (I feel better physically AND mentally! Finally!)
Something is not the same (I'm not so crazy)
I'm through with playing by the rules (CF should keep me from doing things)
Of someone else's game (CF is NOT my game)
Too late for second-guessing
Too late to go back to sleep (Let's stay awake!!!)
It's time to trust my instincts
Close my eyes: and leap! (I'm Leaping back into life!)

It's time to try
Defying gravity
I think I'll try
Defying gravity
Kiss me goodbye
I am defying gravity
And you wont bring me down!
(No one will bring me down!)

I'm through accepting limits
''cause someone says they're so
Some things I cannot change
But till I try, I'll never know!
(Exactly how I feel! I'm going to try!)
Too long I've been afraid of
Losing love I guess I've lost
Well, if that's love
It comes at much too high a cost!

I'd sooner buy
Defying gravity
Kiss me goodbye
I'm defying gravity
I think I'll try
Defying gravity
And you wont bring me down!

So there it is, I'm going to DEFY GRAVITY and DEFY what I should be - depressed, anxious and sick from my CF. I'm going to do things and experience life to the fullest while I am feeling this healthy!

I'm going to DEFY GRAVITY!

Sunday, May 16, 2010

Great Strides

Great Strides is Today!!! I'll be walking this morning with friends and family. We raised over $5,000 this year. Not bad considering our team is significantly smaller.

This is for Eva, Janel, Laura, Lauren and all my other CF angels.

This is for Lauren, Talana, Tabitha, Tricia, Angie, and all my CF Friends.

This is for all the CFers who are little kids who really need a cure so we can spare them all the pain and suffering we have known.

This is for all the CFers who have ever been sick, who are still sick, or who will ever be sick.

And this is for me. Because I am on my way to learning to live my life - and I've spent ONE YEAR out of the hospital. And NINE MONTHS without IVs.

<3 <3 <3

Monday, May 10, 2010

"You Are My Sunshine"

"You Are My Sunshine" is the state song of Louisiana. I think I was really supposed to be born there. I absolutely love it (except for the fact that there is all that DAMN humidity. I think I'd go north - or way west to Hawai'i for the summer). And my dad lived there until after the 9th grade.

"You Are My Sunshine" is a song my mother couldn't listen to when I was a child because of the connotations and the fact that I have cystic fibrosis.

Today I am in a very dark place. I've been in this dark place for awhile now, and I'm doing my best to fight my way out. But there are days I want to give up fighting and trying to live my life and I just want to go to sleep until it's all over. It won't be over until I fight my way through, but try using logic with CRAZY. It doesn't work.

Last week I had to check myself in somewhere where I could get more help. I thought about a psych ward, but that's expensive and I wanted to reach my "ONE YEAR WITHOUT BEING IN THE HOSPITAL!" goal. In a couple days it will be one year, and I hope I will be as happy as I should be, but I probably won't. Anyways, instead of a psych ward, I went to my parents' house, because Crazy lives there and my dad is a psychiatrist.

It's so hard for me to talk about my dark place. I was at my parents' for a week, and it helped to be there (except for the night we had a tornado warning, and my dad thought a good thing to distract me would be to turn on his toy trains. I have lived through a tornado. Anyone wanna tell me what a tornado sounds like? Toy trains + already so panicked I'm sobbing = BAAAAD Idea. I had a panic attack for two days straight). It helps not to be alone.

Now I am back at my house and working and trying to socialize, etc. And it's not working. I'm panicked. Not so panicked that I think I'm going to die, but panicked. I saw my psychiatrist last week and he put me on a new medication: Abilify. I have now joined a new group of people: THOSE WHO NEED ANTI-PSYCHOTICS. And I am a proud card-carrying member of this group, especially if the drug helps. I'd cut off my left foot if it would help. Yes, the left one. I'm particularly fond of the right and my left big toe is cracked in two places and we've been super gluing it, and I just don't really want to wait for it to grow out. So I'd gladly give up the left foot to feel better.

Panic. Panic Panic. Panic Panic Panic Panic PANIC PANIC PANIC! PAAAAAAANNNNNIIIIICCCCC!!!!!!!! Just like that, all day long. And honestly, I'm so far gone I'm confused. And right now I can't tell ya if my PTSD is bothering me or not. Am I having flashbacks? I don't know - but I'm going to panic about them anyways!!!

I'm in the dark panicky place and nothing helps. NOTHING. N-to-the-O-to-the-THING. Nothing. Except there is one thing that makes the world a little sunnier, if only slightly, and if only for a little while because it has a bedtime.

My nephew, Luca, makes my world a little sunnier. The Sunday before Mothers' Day we went to breakfast, the zoo, and lunch. I love his parents to death - they are amazing people, but adults just can't help with my anxiety. But this little kiddo can. All he has to do is say, "More please," "'s Broken," or "I DID IT!" and my heart melts and the panic goes away.

Tonight I had the privilege of babysitting him. At 18 months this kiddo can put his books away, and knows how to put away the bath toys. And don't get me started on the potty talk. He tells you when he has to poop (and sometimes, I think he just thinks it's a fun word to say. Can you blame him? POOP!), and pees on the potty when the timing is right. Tonight, he peed on the potty for me!!! I was so happy to empty that little potty with the pee in it, and swish it out with toilet water before putting it back! I never thought someone else's bodily functions could make me so happy!

But before we went potty, we called my mom and dad. And he said, "Hi Bruce and Hi Alice" - except he's a toddler, so it's way more cute than that. And, I accidentally taught him "Poker Face" by Lady Gaga. I had it in my head after a conversation with his mother, so I was singing it. And now, when I sing it he points to his face. And you can ask him where his poker face is and he'll point to his face and say, "Poker Face." My dad was asking him all sorts of questions and he answered, "yeah..." to each one. Just like that, with the ellipse after it, like he had more to say but couldn't find the words because he was stoned out of his mind. (Not that he WAS stoned... but the way that stoners say things, that's the way he said it.)

I gave him his bath and we went through his bedtime routine - with no-fuss. Auntie Carla even knows how to dry Baby Luca's hair with the towel without making him cry. Because I'm the shit. And then, because I promised we tried calling my brother again; he didn't answer the first time we tried. He answered this time, and I just had to show off the Lady Gaga impersonation. Because only the cool babies know "Poker Face."

And then it was time for bed. We read "Goodnight Moon," and then I rocked him. I cried a little because I didn't want to put him to bed because either he distracts me enough that the panic can't get through, or he's a magical baby with super powers of protection against panic. I think it's the 2nd one. And I realized this kiddo is my sunshine. Right now, from my dark, dark place, he is a reason - if not the ONLY reason - I keep fighting. There are other reasons, I suppose, but it's rare if I remember them. I needed to let my kiddo know how special he is, so I sang him a song that goes like this:

"You are my Sunshine,
My only Sunshine,
You make me happy,
When skies are gray.
You'll never know Dear,
How much I Love You.
Please don't take
My Sunshine Away."

I love you Luca-Bean. I know it will be years before you ever understand, but thanks for being My Sunshine in this dark, dark time.

Sunday, May 2, 2010


I will focus on today. I will focus on this hour. I will focus on this minute. That is how I will survive.

Things have gone bad - my PTSD is pretty much out of control, as are my panic attacks. My mother and I had a fun-filled day of criticizing Carla yesterday. Also, she was/is mad because I've never told her everything about the trauma - so she made me talk about it. It's a box I'm supposed to keep closed. I'm trying to sit on the box and zip it shut, but it ain't workin'.

I need to keep quotes and advice close in my mind to make it through.

"You may have to fight the battle more than once to win it" - Margaret Thatcher

That's pretty damn true. But it sucks.

I keep reminding myself of what my primary care doc told me, "Everything is useful."

And I know someday this will be useful. Someday I might be able to write about it and get my book published. Someday I might be able to talk to young kids and advocate against abuse. Someday maybe I will help someone because I've been here and I know what it feels like.

But right now I'm focused on TODAY. "No Day But Today," and "This too shall pass." The second one my dad says a lot. He's my rock.

I will make it through this minute. I will make it through this hour. I will make it through today. And then there is always tomorrow.

Saturday, May 1, 2010

Live, Laugh, Love

The words "Live, Laugh, Love" hang in my living room. I try everyday to live up to them. Lately I've been feeling lost, confused, and even sad. But the one thing I never run out of is Love.

Love is my favorite feeling. Just being able to love the moment you're in and smile and laugh is the best feeling in the world. It's no surprise that lately I have been feeling a little un-loved. My mental struggles and my physical ones can make me feel like it's just me vs. the world. But when I look around I almost always find an incredible amount of love.

And like the Beatles said, "All you need is Love."

I always have many things to say - like tonight i could write about how my toe is once again keeping me from dancing, or how my car ran out of gas, but i want to write about Love. I want to share with you some of the reasons I am feeling loved - and loving my life - tonight.

Tonight I went to a formal masquerede ball put on by the ballroom dance group I belong to. Because I am a council member I had to be there early to set up all the decorations. I had picked them out, and as they went up in all sorts of creative ways, I felt love and joy. I love my ballroom group. The other night I wrote how I want to have a place like Cheers - where everyone knows my name. Tonight I realized I do.

I feel loved when I get a text message or a phone call from a friend. Especially my best friend.

Everyday when I go to the mailbox during this time of year I feel loved because sitting there waiting for me are more checks for my Great Strides walk for The CF Foundation. And even better than the checks are the little notes people include with them. They warm my heart.

There was more I wanted to say in this post - coherent thoughts even - but they are gone now because it's past midnight and my brain turned into a pumpkin!


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