Catch Up

This post is to catch up from the Paul Simon concert until today. 

I know some people have wondered "Where has Carla been?"  For the most part, the answer is "with my boyfriend, Dan."

The day after the Paul Simon concert I went to Illinois for my grandmother's funeral.  Dan came with me.

For Thanksgiving Dan and I went to Michigan to visit his parents.

We threw a Christmas party the weekend before Christmas and moved a lot of my stuff into Dan's house.

Over Christmas we went to New Orleans with my parents and brother.

We spent a weekend in Milwaukee in January.

Dan and I went to Florida to visit his grandparents and to go on a cruise.  It was fantastic.

Dan's grandmother passed away the week after we got home from the cruise so we flew to Philly for the funeral.  

The day after we got home from Philly, demolition on our kitchen started and I ended up in the hospital for two weeks.  After the hospital I spent a week with my parents to avoid the dust from construction. 

After a month away, I came home last Sunday, but it doesn't stop there!  In the next month we need to get everything from my old house to the new one and put everything away (while the kitchen construction continues).  All this is to prepare for our new PUPPY who comes home the last weekend in April (after I attend my best friend's bachelorette party).

Can I breathe yet?  

All together I weigh almost 20 pounds less than I did in November, live in a different house, and have a very different life than I did this time last year.  Overall, I am extremely happy!!!

Bliss

Last night I got to see Paul Simon in concert. My boyfriend (I'm still a little, "wait, I have a boyfriend?") got the tickets for my Christmas present. We had an amazing dinner before the show at a steak house. One of the best meals I've ever had. The concert was amazing. It was one of the best days I've ever had - and I felt like sharing. :-)

Life is good.

"Mmmbop"

All I can hear is "In an Mmmbop they're gone."

On September 14th my best CF friend Lauren passed away.  And I still can't really talk about it.  I went to her grave both Saturday and Sunday and all I want to do is cry because I miss her so much, but I know she would want me to stay strong and keep on. 

I wrote down some words today while watching TV - words that remind me of Lauren and how I feel about her death. 

Empty - it's how I feel
Laughter - it's what I hear when I think of her
Brewers Games - she loved them so much
Perkins - one of my favorite memories
65 Roses - we both have it
Fundraising Queen - she had me beat
Bloated Bellies - and that amazing picture of Laura, Lauren and Erin
Birthdays - she never forgot one.  
Tears - I've shed so many

Lucky Ladybugs - we'll be forever
Love - it's what she was all about

Giving it a Go

I don't remember how to do this - the blogging thing.  I used to write almost every day and sometimes more than once a day.  I used to sit in front of my computer all day watching TV and playing Minesweeper.  When I had a thought worth saying out loud, I would blog it.  I don't remember how to do that. 

I want to write about VX-770 finishing phase 3 clinical trials and VX-809 not being far behind.  I wrote a post about my future when these drugs first looked promising.  I was thinking about all the possible things I could do - finish college, have a career, have a family.  I haven't thought much about any of that since because I didn't want to hang all my hopes on one drug.  I didn't want to be disapointed when the trials went poorly and the drugs never became a reality.  But now they are a reality.

Back in 2008 I wrote:

"and omg this could happen before Darin graduates college!"

That wasn't a terrible guess as to when the drugs would come out - my brother graduated college this past spring.

These drugs are here and my dreams are back.  I don't know what to dream about yet, except a family.  I know that's what I really want in life.  I want a family and to finish my book.  If I would just sit down and write more the 2nd one would come easily.

I think I need to re-learn how to dream big.

Cystic Fibrosis, as told by two

Today I saw on Facebook that my friend Meranda posted this as her status:

My Attending said he thinks a CF patient will figure out the disease before a researcher after he and I had a long conversation. I just wish that person could be me. I'm tired of suffering and watching my friends suffer. We have to put on a smile and try to get through each day without complaining, while we're suffering--and expected to handle it like a champ. It's almost like people expect CFers to be tough and be unrealistically positive, keeping up the pace with the outside world, and exercising until our legs fall off. Why is this? Most people are laid out with the flu and yet we have to be superhuman without enough oxygen or lung function to get across the room.

And I replied to her:

Meranda - thanks for these words. I feel that we really get life and most others don't. We know not to take the ability to climb a flight of stairs for granted. We know to treasure each and every one of our friends. We're just a little more tuned in. In that way, and only that way is my CF a blessing.

 And  I stick by my words.  Today I am happy and dancing around because I have a little energy to dance around.  I went to the gift shop and bought myself some things because I had the energy to go to the gift shop.  I've only taken one short nap today.  (I plan on taking another, but not a long nap).  I'm happy because my hair is going to get washed - and my boyfriend is going to wash it for me.  And I have a boyfriend.  These are the reasons I am really happy today. 

Tomorrow I will be happy because I'm going home from the hospital and I get to eat at the CHEESECAKE Factory.  Mmmm cheesecake. 

It's days like these where I'm not at my healthiest that I try to find a couple things to be really happy about. 

PTSD Triggers

I'm dedicating this post to PTSD triggers - and the fact that they exist and I still am learning how to deal with them.  I'm working on being able to talk about what happened to me and working on certain triggers, but there are some that I have been advised to stay away from completely.  Curling up in a ball and sobbing just isn't something on my list of "fun things to do."


From the About.com article on PTSD triggers:

"PTSD triggers may be all around you."

"Because certain thoughts, feelings, or situations can bring up uncomfortable PTSD symptoms, such as memories of a traumatic event or feelings of being on edge and anxious, one way of coping with these symptoms is by increasing your awareness of these triggers."


"Triggers can fall into two categories: Internal Triggers and External Triggers. Internal triggers are things that you feel or experience inside your body. Internal triggers include thoughts or memories, emotions, and bodily sensations (for example, your heart racing). External triggers are situations, people, or places that you might encounter throughout your day (or things that happen outside your body)"

Read that?  CERTAIN PEOPLE. For me, it's certain people, certain cars, certain situations, and talking about what happened. 

"Now, the best way of coping with triggers is to avoid them altogether."

And that's what I've been trying to do.  Because I know I'm still recovering; I haven't put a lot of effort into coping with my PTSD triggers because the flashbacks and nightmares are so bad.  I'm getting to the point where I can talk about it without flashing back, but I still get really anxious when I talk about what happened. And forget about being in the same place as one of those certain people... I curl up in a ball and cry. 

I lost a very close friend over a trigger of mine... and I'm still heartbroken about it. And I guess you could call this post a last-ditch effort to make her believe me.  Or maybe it's a last-ditch effort to show my other friends that I'm not crazy or unreasonable about this. Whatever it is, it's helpful to me.  It helps just knowing that information.  

Today I found a blog post by someone I consider a "PTSD Expert."  That's what motivated me to do a little research and write my own little post on PTSD triggers.  You can find her blog post here.

From her post I learned that I should step back and examine what I'm feeling and why.  I think I'm going to save that post and continue to learn from it.

No Regrets

I'm sorry I wasn't good enough.
I'm sorry I was too perfect. 
I'm sorry I was too sick.
I'm sorry I never told anyone.
I'm sorry no one believed me.
I'm sorry we grew apart.
I'm sorry I was condescending.
I'm sorry I made a mistake.
I'm sorry you couldn't forgive me.

But most of all,
I'm sorry I'm not really that sorry.