Friday, December 17, 2010

Is It December Yet?

So I was pretty sure it was December until I called a friend back and we had to go through all the issues we fought about in OCTOBER.  OCT - to the - OBER.  The month with Halloween in it... do you realize CHRISTMAS is a week away?  That's two months ago.

To be fair, things with this friend - THE friend - were never resolved.  I just sort of forgot about them.  Among other things, I have been disowned and re-owned, helped bonus siblings with family problems, realized someone close to me has an alcohol problem and tried dating (and not very successfully...).  The fact that the friend is still mad at me slipped away and got buried at my pile of things to worry about.  I've been busy at work (thankfully - I love it there), and I've been busy in general.  Christmas decorations take a lot to put up. 

So I called the friend back last night because she had called and left a message the night before.  The next hour-ish consisted of me explaining exactly why I can't be with my trigger and crying and blah, blah, blah.  I don't even want to type about it.  The last thing I said was, "I wouldn't wish what he has done to me on anyone.  Especially a friend."

And to continue that thought, No Means No.  My trigger has violated that many times, and therefore violated me.  I will not stand and be violated again - either directly by being forced to come in contact with him or by having PTSD issues. 

I have to keep in mind what Kyra said,

"Your friend may never be willing or able to understand mental illness. Its hard for people sometimes when on the surface someone seems so healthy. Realize that your brain is fundamentally different than someone without PTSD. (And if anyone contradicts you, send them to the head of the Psyc department at the UW, who has research to the contrary) I'm betting your friend wouldn't ask someone with a triple bi-pass to run a marathon. In the same way she shouldn't ask you to be in the same room with your trigger. It would endanger your life and health just as much the marathon would someone with a heart condition."

I want my friend to understand, I really do.  I'm not sure if she is willing.  I'm not sure if she's able.  I won't stand for someone to endanger my life and health.  I'm just not going to be okay with that.  Ever. 

And that's the point I wanted to make in this post.  It's okay to have PTSD.  It's okay to have triggers and it's okay to need to learn to avoid those triggers.  Luckily, my major triggers are a couple people... easy to avoid.  My minor triggers (Mitshubishi cars, soccer, my hometown) are also easy to avoid - and even the minor triggers, I usually just twitch a little - I don't have a full-blown flash back.  I don't get the full anxiety.  But my major triggers are bad for my health.  I will stay away from them at all costs - even if I have to lose my friend because she doesn't understand my disease. 

Always remember, No Means No.

Thursday, November 25, 2010

Thanks on Thanksgiving

Today is Thanksgiving. Usually I love to post all the things I am thankful for and talk about them, but this year I'm not feeling completely thankful. I'm struggling with depression, which i hope is just situational because of the trouble with my mom and my friend.

But i am thankful. I have some of the most amazing people in the world supporting me through all this. I have a wonderful job (that I need to blog about), and i have my miraculous health. I'm not completely healthy, but I'm much better than i was, and that is wonderful.

I have a nephew who fills my heart with joy no matter how sad i am. I have my bonus siblings - Chris, Kyra, Sarah, and Chase, and i have my unwavering rocks, my brother, Darin, and my dad.

I can't express how thankful I am for these people. They give me faith in the world and faith in myself. And maybe that's what I'm most thankful for - my ability to have faith in myself even when I'm being attacked. My faith in myself definitely wavers, and I'm so thankful to have wonderful friends, family and a great therapist who build me back up when I fall over.

And I'm sort of tipped over today, but I have people who love me surrounding me and reminding me why I love myself.

And I have Luca-Bug. Who wouldn't be thankful for this?




Happy Thanksgiving. I hope you are all as lucky as I am. I hope you are in good health and surrounded by people who love you for you.

-- Carla's on the go! Post from her iPhone.

Saturday, November 20, 2010

So Lately

Recently things have been hard; it's been hard to get off my butt and do anything.  It's hard to not think about my mother or the friendship that got screwed up.  In hard times like these I try to turn to my angels and let them bring me what I need.  This post is going to be quote heavy, but it's how I feel and expresses best my emotions. 

I try to live knowing, "You can't always get what you want, but if you try sometime you might just find, you get what you need." - The Rolling Stones.  The 2nd half of that quote was my senior quote for the yearbook in high school - because I couldn't fit the whole thing.  I honestly believe "If you try sometime, you might just find you get what you need." 

Wednesday was probably my worst day.  I couldn't stop crying at work.  I came home early to go directly to sleep.  It was "Go straight to NAP. Do not pass Go. Do not collect $200."  I couldn't handle the world anymore.  And then my phone started dinging.  Ding. Ding. Ding. Ding. You've got Text Message.  So I got up to see who was obsessively texting me.  And it was three texts from a guy I hadn't heard from since August... and they were very sweet text messages.  Apparently, he's a blog lurker (HI!) and was worried about me.  I believe my angels sent him to check up on me.  More on him later... but....

And tonight I'm having trouble again.  Things with my mom still suck.  Things with my friend still suck.  And I'm not doing well on the path to loving myself completely like I wrote about in the last post.  I'm on my way to bed, but a song came to mind - and it's a song I really needed tonight.  I need to put myself "In the arms of the angels" and "fly away from here."

I feel like this song... and it is strongly tied to my memories of Ladybug.  And I am missing her tonight.  And I'm thinking about all my other angels and asking for their help.  So here are the lyrics to Sarah McLachlan's "Angel."

Spend all your time waiting
For that second chance
For a break that would make it okay
There’s always one reason
To feel not good enough
And it’s hard at the end of the day
I need some distraction
Oh beautiful release
Memory seeps from my veins
Let me be empty
And weightless and maybe
I’ll find some peace tonight

In the arms of an angel
Fly away from here
From this dark cold hotel room
And the endlessness that you fear
You are pulled from the wreckage
Of your silent reverie
You’re in the arms of the angel
May you find some comfort there

So tired of the straight line
And everywhere you turn
There’s vultures and thieves at your back
And the storm keeps on twisting
You keep on building the lie
That you make up for all that you lack
It don’t make no difference
Escaping one last time
It’s easier to believe in this sweet madness oh
This glorious sadness that brings me to my knees

In the arms of an angel
Fly away from here

"And maybe I'll find some peace tonight/ In the arms of the angel."

Love to all my angels.

Beautiful Words

 These are the beautiful words Kyra wrote about one of my recent posts.  After her comment, I will write a little about what she said.  
Kyra S. has left a new comment on your post "Mental Me":

Someone once said "Just stop feeling that way!"

Yeah. Right. I'll get right on that.

I know it is hard because of your anxiety to just let it be unresolved (this is from a card carrying member of the anxiety club) but realize that you can. And every time your brain comes back to that "Oh no, I can't take it place" just reply calmly "Yes I can, cause I've nearly died and if I can survive that I can survive this." And just pretend you believe it.

Your friend may never be willing or able to understand mental illness. Its hard for people sometimes when on the surface someone seems so healthy. Realize that your brain is fundamentally different than someone without PTSD. (And if anyone contradicts you, send them to the head of the Psyc department at the UW, who has research to the contrary) I'm betting your friend wouldn't ask someone with a triple bi-pass to run a marathon. In the same way she shouldn't ask you to be in the same room with your trigger. It would endanger your life and health just as much the marathon would someone with a heart condition.

I recently had a conversation with someone in a high position in the mental health community who asked how it is we can change perceptions of mental health in the US. I believe that we need to see people with Mental Health issues as full and complete people. Period. Not to be fixed or cured. Treated? Of Course. Medicated? When necessary. But to see them as valuable human beings first.

You are a whole, complete, wonderful person as you are. Give your PTSD a hug, cause it is part of you and you are wonderful.

Know that you are loved.

PS. Luca says: fffffffjfjfjdjdg. fjhgh edug sfggh h fd hesdjz. (Which I think means "What mommy said!")

These are words are so beautiful, so complete, so good for my soul it's hard to write about them.

I need to realize that my PTSD is just as much a part of me as my CF is.  I accepted my CF a long time ago - I know that it is part of me but does not control me.  I know that I am a complete person who happens to have CF.  I need to do that for my PTSD, too.  I need to realize that I am not a crazy burden.  I am a person with a medical illness - that happens to be mental - and sometimes I need some accommodations.  Just like when I travel I use a wheelchair and my friends accommodate that, they need to accommodate my need to not be around my PTSD trigger. 

I may not know what to do about my friend and her inability or unwillingness to accept my PTSD, but I need to accept my PTSD and know that I am a whole person who has some challenges.  I need to realize that I did what I had to do to protect myself - and despite the fact that she says I can't be trusted to behave appropriately, I do behave appropriately; I behave in a self-preserving way, sometimes, but other than that my behavior is always appropriate.

I know I have wonderful people supporting me; these are the people that see me as a whole person who happens to have PTSD, not as a burden or a crazy loon. 

And maybe I am a crazy loon - but at least I know it and can give my whole self a hug - PTSD, cystic fibrosis, fibromyalgia, endometriosis, depression, anxiety, diabetes and all.  It's who I am.  And the entire me is loved by some incredible people, and I am working on being able to love my entire self, too. 

Wednesday, November 17, 2010

Like Oprah and Law & Order

I'm disowned again.  Maybe just for today or this week, or maybe for a long time.  So Oprah, Law & Order and I have a club. 

I'm barely holding it together.  "Like a G6" helps. Awesome friends help - but I usually cry because they are so nice and wonderful to me.  Later I'm going to post the comment Kyra made on my last post because it is just too beautiful not to share. 

The other thing that helps is that Katy Perry song "Peacock."  I can't stop watching the silly video I posted a link to last night in the middle of the night.

Like Kyra said, I've almost died before, and I came back fighting from that.  I fight for my health all the time.  I can fight through this and survive.

So that's what I'm doing today.  Trying to survive and to cry as little as possible.     

Mental Me

It's 3am and I'm up.  I'm up, listening to "Like a G6" and writing... well, waiting for inspiration and play Bejeweled.  I'm sort of a mental mess right now, and I have realized that my blog has become a play by play of my PTSD adventures, and I rarely write about my CF anymore.  That's because my CF hasn't really been a problem lately.

I wrote in my last post about a fight with a friend and a trigger who is a person.  Well, it's escalated and I'm completely heartbroken.

My friend sent me an email in which she completely ignored my PTSD, and from what I understand, she doesn't want to deal with it.  I don't usually do this, but I am putting up a quote from her email because it is what has me so upset.

"A is my friend and I will invite A to events I host, and for now, you will not be invited when A is because I cannot trust you to behave appropriately."

When I got this email I broke into sobs.  I can't be trusted to behave appropriately.  Untrue.  Considering my mental illness, I am behaving in a completely appropriate manner.  I will run from my trigger.  I actually pride myself on acting mature and like a civilized adult.  I am silly - but I know how to behave myself. 

My friend is being unfair to me.  It's how I feel.  She won't talk things through with me - won't listen to my side, but as I was told this evening, what I say will probably fall on deaf ears unless my friend is ready to hear it.  It's the waiting that is killing me.  I am not the type of person who needs to cool down - I need to work things out immediately because otherwise they eat at me and I become a ball of mush who cries at work - I can't believe I cried at work today. 

My friend is being unfair to me.  It is completely not fair to not think about my PTSD and try to understand.  "A" has done and said horrible things.  "A" violated me.  End of story.  "A" is a serious trigger for my PTSD (thinking about coming in contact with "A" sends me into a full panic - which is what happened.  We were both invited to a party - as a way to stop my panic attacks, I asked "A" if he/she would do me a favor and not show up to the party I really wanted to go to. "A" said fine.  My friend is still mad.  Still really mad, apparently.). 

I have been told by three different mental health professionals to avoid "A" and to never be around "A" because I could relapse.  The last time I relapsed was this past spring.  I nearly checked myself into a mental ward, but instead went to stay with my parents for a week.  *Side note - I brought this up to my mother today, and she didn't remember this at all.  Thanks for the support, Mom.  Like I said this is a side note but not a totally different story.  Sort of like me talking about my triggers to her allows her to air her opinion that I should just "grow up and be an adult."  Sure Mom, I'll work on growing out of a mental illness that went untreated for many years.

I don't want to relapse - and I feel there are a few special people who are keeping me from such a relapse.  But I got the email from my friend this evening and I cried... from 9pm when I got home from work until 11 when I went to bed.  And it was what Oprah and I call the "Ugly Cry."  The sobbing so hard you can't breathe.  Snot flying everywhere and the hyperventilating.  

I had to call my brother twice - and luckily the 2nd time he had me watch a completely awesome YouTube video.  You're welcome! And Thanks Darin!!!

So that video cured the Ugly Cry, but not the pain.  I don't know what to do about the pain.  One of my very best friends isn't speaking to me - and she won't even think about my PTSD.  Listen to why I did what I did, or try to understand why I can't be around "A."

I want to feel like I'm a good friend - because right now I feel like I can't do anything right.  I try so hard to fix things, to apologize when I screw up (which in this case, I did what I had to do - even if it was wrong.  I had no choice.  I had to stop the panic attacks somehow).  I take my friendships very seriously because my friends are so important to me.  My family could fall apart at any moment - my brother is going to move away.  My mother is prone to uninviting me to things - like today, when I got myself uninvited to Thanksgiving.  Maybe she'll cool down and I'll go, but I don't know.  My dad gets irritated when I call too often (which is like, a daily occurrence).  So I need my friends.  And right now, I feel like a horrible friend. 

Tonight I sent text messages and emails to my really good friends - the ones keeping me going.  The ones I am truly thankful for and blessed to have in my life.  I am trying to focus on the positive - like these people, but it's so hard.  Why can't I just forget my friend and move on?  Because she's in my core group of friends.  She is one of the people I thought I could count on for anything.  Someone I thought would understand mental illness - and apparently she doesn't understand or doesn't want to understand.  And that just hurts so bad.  

I want the pain to go away. Today it was pretty unbearable. After I found out Mom said she doesn't want me to come at all for Thanksgiving, I came home early from work and took a nap right up until the time I had to go back to the studio.  I needed to curl up and hide from the world... and this was BEFORE I got the fabulous email from my friend.  BEFORE the sobbing and the even worse pain. 

Most of all, I want my friend back.  I want things to go back to normal.  I want to hang out with my friends and have a great time laughing and playing games or watching movies or whatever. 

I want to feel whole again.

Saturday, November 6, 2010

Proud Mental Case

I just saw a commercial saying 1 in 6 adults has a mental illness.  I am proud to be one of them - proud to have gotten treatment with therapy and medication and proud to continue to go to therapy and take my medications.

I recently had an incident where I had what might be best described as a "flare up" of my PTSD, and it caused an argument between me and one of my best friends.  And I don't know how to help her understand my PTSD.  I don't know how to help any of my friends understand.  Some of my friends and some of my family are so unbelievably supportive, and some people just say the strangest, worst things imaginable.  My mother says many of those horrible things - but that's a different story. 

My PTSD is here to stay.  I have triggers - things that make me nervous, uncomfortable and anxious.  Some things cause a bigger "flare up" than others.  I cringe every time I see a particular make and model of car.  There is one sport that I would love to be a fan of, but it makes me uncomfortable.  And there are a few people I just can't be around.  It's a long story why I can't be around a couple people and it's a longs story why I was in a fight with my friend.

The point is, I want my blog to help people understand mental illness.  I want people to understand that I am like everyone else, I just have a few problems with my brain - just like I have problems with my lungs.  I'm still a person with feelings, wants, and needs. 

Mental illness is harder for me to deal with than my cystic fibrosis.  It's entrapment in your own mind.  It's illogical and you can't escape it.  Sometimes I know I am absolutely crazy and acting unreasonably, but I can't help it.  I am doing my best to calm down, or make the flashbacks stop.  I am trying to survive until things get better. 

Mainly, I want compassion from others and some level of understanding.  You may never know what it's like to experience a mental illness personally, but try and understand what your friend/family member/coworker/neighbor/that stranger you judge is going through.

Wednesday, November 3, 2010

Life in Fragments

I don't feel I have time to write a complete blog post.  So here is one in fragments...

Loving life.
Doing some volunteer secretary work and dance training.
Taught first ballroom dance class - the waltz.  Went well. LOVE it.  Born to teach.  Thought someday I'd teach chem; teaching dance more fun, less work.

Loving Luca - cutie who has stolen my whole heart.
Love being MoH for best friend's wedding... planning things is so much fun!
Doing dishes, laundry, knitting, quilting, knitting, dance, try to write but pretty much fail.
Halloween my favorite.  Had great time dancing and partying.  Was Queen of Hearts - so great!

Looking into small O2 concentrators so I can travel - nothing going to hold me back.  Going to live my life fully and fun. 

Thanks fam and friends for making my life wonderful.

The end.

Thursday, October 14, 2010

Mr. Big Turns Two

The Bean, Luca-Bean, Luca-Bug, Buddy, Bug, Mr. Big, LLBean (Little Luca Bean), Mama's Teddy Bear.

Luca. So many nicknames for such a sweet little boy.

Today you are two, Luca-Bug. I never knew that two could feel like such a big number - so old. It's cliche to say, but I remember the day you were born like it was yesterday. It was a cool, cloudy fall day - and I thought it couldn't be more beautiful because I was thrilled you were finally going to be born. There had been lots of waiting - lots of walking around with Mama to try and get you to come into the world, and none of it worked. Not even seeing David Sedaris and laughing that hard could cause Mama to go into full labor. He signed a book for you - and when you're older, I hope you read it and enjoy it as much as I have. It's a funny book.

But back to the story of you. Mama was in labor at the hospital on the 13th of October - which happens to be the birthday of my best friend since kindergarten, Sarah Lynn. I didn't know how I felt about you sharing her birthday - but I know she's been such an angel in my life, it must be a good sign if the 13th was to be your birthday. You were born after midnight that night, so you are a 14th of October baby. And Luca-Bean, the 14th is a great day too. You have become an angel in my life. I can't tell you the number of ways my life has improved since you were born. Mainly, there are more giggles, hugs, kisses, and silliness. And I love being silly.

I can't imagine what the last two years would have been like without you. You





make me laugh harder and with such pure joy. I have taken hundreds of photos of you - I'm afraid I'll forget what you were like at each age. You have grown and changed so fast!

I wanted to do something really special for your birthday, but there is nothing I could do that would come anywhere near being as precious as what your mama did. You can see it at http://kyrachris.com - search for montage, I think. Luca, I cried watching this montage. Many of the photos are ones I took - like the first photo of you where Baba is holding you. And at the park with Mama. And the second to last photo was taken at my One Year IV Free Party. Hopefully you'll never have to know how sick Auntie Carla was or why that party was so important. Hopefully, there will be many more IV Free years!

The song Mama used in the montage was a song I put on the Lullaby CD I made for you - one of 10 CDs I made for your 1st Christmas. I want you to love music. I want you to be passionate about dance. Most of all u want you to be happy. So don't worry about what I want you to be - be whoever you want to be.

Always know that I am here for you, Bean. You can tell me anything. I'll help you through anything.

"I'll love you forever and always because you are my Dear One." - Barbara M. Joosse

Happy 2nd Birthday!!!

Love,
Auntie Carla

Monday, October 11, 2010

Conversations

I have had a few awesome conversations recently.  Have fun!

The mind of a five-year-old:


Maddy: Do you still have your tattoo?
Me: Yep!
Maddy (exasperated): Ah, when is it going to wash off!?!
Me: Never, it's a special forever tattoo, remember?
Maddy: FOREVER? Like, even when you're 69?
Me: Yes Maddy, it'll still be there when I'm 69.

This made me think, "Ew.  My tattoo will be all wrinkly and weird when I'm 69.  But I will still want it there."  And I figure that's the point - if you still want the tattoo when you are wrinkly and it is wrinkly and unrecognizable, then the tattoo was worth it.  I'm thinking of a second tattoo - and I can't decide.  What I really want is big and complicated.  A simple version is just the word "Breathe."  I'd really like to have a vine intertwined in the letters and a rose at the top, and on each leaf and/or petals have the first initial of each of my angels - CF and otherwise, possibly living angels too.  But that is a lot of people.  An INCREDIBLE number of people.  I think I'd have to limit it to my angels who are no longer living.

Again, with the five-year-old:

Maddy: What are you doing?
Me: Knitting.
Maddy: What's that?
Me: I use yarn... this string stuff is called yarn, to make things like scarves and sweaters.  This is going to be a scarf. 
Maddy: Oh.

Two minutes pass...

Maddy: Are you done knitting yet?
Me: No honey, knitting takes a long time. 
Maddy: Like a day?
Me: Sometimes, but sometimes many days.
Maddy: I don't like knitting.

Five minutes pass...

Maddy: Are you tired of knitting yet?
Me: No, kiddo, I really like knitting.
Maddy: I don't like knitting.

We were watching a movie, so I thought I'd work on a scarf pattern I've been wanting to try. And while I'm talking about knitting - I took photos of many things I have knit, so hopefully I will be posting those on the craft blog soon.  ALSO, I have scrapbook photos, and I should take photos of the shoes I just put sequins on for Halloween.  They turned out better than I expected!!!


This is possibly the most random conversation I have ever had - if you can even call it a conversation.  It's an online conversation between me and a friend from high school.  His parents were family friends, so I knew him when I was really young.  This is all that was said:

R: Purple?
Me: Orange?
R: Muave?
Me: Burnt Sienna?
R: Aqua marine.
And then he signed off...

I think that conversation is even more random and unintelligible than most of the conversations I have with my 2-year-old nephew.  Luca is more clear with what he wants to talk about.  

Last night Luca was here and again he asked, "Where Gammpa Buce?" and "Where Gammpa Buce go?"  I love that he loves my dad.  I loves that he calls him "Grandpa" because I don't know if I or my brother will ever have kids of our own.  It's hard to explain to him that he doesn't live with me - that he just comes to visit a lot.  
 
I love conversations that make me laugh :-)
 

Friday, October 1, 2010

The new nap

I'm having a bad day. I'm lonely and having trouble getting over what happened this morning. I don't know if it was a true flashback but i didn't like it.

So I'm going to take a nap. Here's me ready for my nap - O2 and all.




-- Carla's on the go! Post from her iPhone.

Holding Hands

It's early morning and I'm sitting on my couch knitting.  My needles clicking fast - trying to finish one scarf so I can finish another.  Suddenly, I burst into tears.  Only for a moment do I sob; then the tears just trickle slowly down my face.  I know what started the flow of tears, but I'm not sure why they started. 

I'm watching last night's episodes of "Grey's Anatomy" and it's heavy on the PTSD issues.  A scene where a character falls to the floor in fear and can't move - I remember when that would happen to me - but I don't start crying yet.  The fallen character's best friend rushes to her side and holds her hand to pull her out, to calm her fear.  Now my sobs start.  I wish someone had been there to pull me out - that someone had recognized what was going on. 

I remember a best friend calling me ridiculous because of my fear.  I had collapsed on the floor in front of her and she told me I was faking it.  That made it worse.  Sometimes, I thought I was making it happen - but then why couldn't I stop it?

My tears stream because I needed that one person to confide in, one person to tell me it isn't my fault and to tell me I could do something about it. 

I went to college still 'crazy' and I still regret things I said and did to people.  I needed so much help and it only got much worse before it got any better.  When I finally got help, I found a person - a few people, but one person in particular - who gave me the strength to come forward.  This person, A, still inspires me today.  I believe she went through much worse, but she was able to help me.  A says I helped her too, and I hope I was able to be her pulling hand as much as she was mine.  Sometimes when I have a bad day or a PTSD nightmare I want to rush to her side, hold her hand and make sure she's really okay. 

I have more mature friends now - most likely because I'm older.  My very best friend Sarah Lynn and I are much closer than we were in high school - we drifted apart during those four awful years.  My more mature friends understand what happened and some even help pull me out when I have a bad day or a relapse. 

But I have all these 'what ifs' rolling around in my head.  What if Sarah Lynn and I hadn't drifted apart?  Could she have been the one to hold my hand and pull me out?  I know she could be that person now - but what about then?  What if my other friends had been more supportive - or had payed attention?  What if my parents had asked why I was so angry, or why I was hurting myself?

I'm crying because of the 'what ifs.'  Because maybe if someone had held my hand and pulled me out, I wouldn't still have problems. 

The tears are gone.  Wiped away.  I remember I can't change the past, only the future.  And as I return to my knitting and the PTSD-heavy episode of "Grey's," I know I want to surround myself with the friends who would be there for me - and I always want to be the person willing to hold your hand when you need it. 

Wednesday, September 29, 2010

Trading Genes

Can I trade my Genes in for something?  Another set of Genes?  A pair of Jeans that fit correctly?  I'm getting a little tired of MY Genes (sorry Mom and Dad - you kinda gave me the short end of the stick). 

The last straw was tiny in comparison to my cystic fibrosis, my PTSD or my depression, but it was one more thing wrong with me and I broke. 

I have dandruff. 

I know, I know.  Use the special shampoos, use the special drops and it's pretty much gone.  But it's one more thing I'm supposed to take care of, and it arrived the same week as the realization I need oxygen at night.  And I just couldn't handle it.  I had the urge to hit my head with my hairbrush because I had no idea what else to do.  Really?  Are you serious?  I have ONE MORE THING wrong?  And this time it's visible? 

I don't know what to do.  This shouldn't be a big deal, but I feel like the world has crash landed in my lap.  I  think it's everything combined making me dizzy. 

As much as I really wanted the oxygen, I also DIDN'T want it.  Because, honestly, who wants to have to have a huge Big Ugly in their dining room so they can breathe at night.  And there's a giant oxygen tank, too.  And I have to get used to wearing the O2 at night again.  And the best way to do that?  Tape it to my face for the first few weeks until I'm used to it and won't take it off in my sleep.

I wanted the O2 to work immediately and to stop feeling tired and to get all sorts of things done and conquer the world this week, when in all honesty, I still need naps.  Not as many naps - but I need naps.  And that's frustrating for me. 

And to make everything that much more frustrating, I lost my favorite nurse.  Seriously, world?  What did I do???  So I have no idea who my new nurse will be, but she/he will not be as cool and fun as Cindy.  I love her to death.  There is one good thing about Cindy not being my nurse - we can be friends without it being weird now. 

Don't get me started on the dating stuff... I just want to give up altogether, but I guess I'll keep up with the online stuff for laughs and giggles. 

Today I have to do something to make me smile.  Because I need it.

Tuesday, September 28, 2010

Pumpkins and Apples

Last Saturday was an amazing day! Chris, Kyra and Luca  met my parents and me at an apple farm near my house.  My goal for this year was to be with Luca when he got his first pumpkin - and he picked one out!  And after we were all exhausted from picking apples and pumpkins, we went for dinner. 

One of my favorite things was watching Luca interact with my parents.  He calls my dad "Gampa Buce" because 'r's are hard.  And of course, my favorite was saying goodbye and hearing him say, "I Love You."

I had so much fun watching him pick apples and eat apples and pick out a pumpkin - it's hard for me to put into words.  So here are some photos!

Luca's first bite of an apple he picked :-)


 My Cutie in the wagon
 Kyra and Luca headed towards the pumpkin patch
 Luca pets a goat
 BIG PUMPKIN :-)
 Luca finds the perfect pumpkin!!! His FIRST pumpkin :-)
 Luca inquires about a troll in the store. 


I Love You, Bean!!!  Let's do this every year!!!

Monday, September 27, 2010

The Return of Big Ugly

A long time ago - about three years, I wrote about first a home health company bringing Big Ugly to me, and then a couple months later taking him away.  Big Ugly was my first oxygen concentrator.  Big Ugly was just that - big, ugly, and also really noisy.  I hated that thing, but sleeping was better and eventually I needed O2 during the day as well, and then when my PFTs went up, they took Big Ugly away.  And I was Happy.

But I was also sleepy... for three years.  I have been The Queen of Sleep, She Who Sleeps A Lot, The One Who Is Always Asleep for about three years now - and it's gotten worse over the course of those years.  I have switched CF centers, and mentioned my sleepiness when I went to clinic a week ago.  They eventually (after several grueling days of knowing in my heart what I needed and not being able to get it right away) decided I need O2 at night. 

So Big Ugly returned... but this Big Ugly is less big, less ugly, and definitely less noisy.  AND I'm sleeping better!!!  I can take a one or two hour nap and feel refreshed.  I don't need four hour naps! (At least in the last 2 days... this is Day 3 of BEING AWAKE!)

And now I need to know what to do with all my extra time.  There are other reasons I have extra time, which are sad... and I'm going to have to find ways to fill my time.  For now, I am going to make myself a list to remind me how to pass the time.

1. I will walk 3 times per week - at least!  When it is nice out, I will walk outside.  When it is not, I can walk on the treadmill or play the Wii.  Hopefully this will help my lungs and with weight loss.

2. I will finish my quilt.  I will finish THE DRESS OF DOOM that I'm knitting, and I will finish the scarf I'm working on.  Then I will knit other projects.  -most of this knitting will be done while watching TV/Movies-

3. Blogapalooza! I will blog lots.

4.  I will write in my journal and my Letters to Luca journal.

5. I will host movie nights on Tuesdays... well Mondays or Tuesdays???  I don't know - this is a work in progress.

That's all for now - except my doctor wants me to find somewhere to volunteer or something to do.  Any ideas?

Monday, September 13, 2010

Diary of a Trip Home

Today I am on my way home. I'm going to update with thoughts as I go.

•SkyCabs are awesome. And sooo nice! Checked in so easily! And now on my way to security!!!

•Through security at 10:10. My flight is at noon. I thought this would take much longer!!! Next step - getting to the gate!

•Got to the gate, asked about pre-boarding. Woman was short and curt with me, and then she was just mean. She questioned the number of items I am carrying on - one is my meds. I can't check that and I won't. No one has ever hassled me before. They are usually very nice to me because I'm a special needs flyer! She was telling me I had time to consolidate and I panicked. First not fun event of the day.

•I want to see if my flight is overbooked and see if I can get on the waiting list to take a later flight. I love me some travel vouchers!

•I checked on the voucher thing, and the flight isn't full. Sad Panda. And I'm probably going to miss my flight in Memphis. Boo.

•Time to read, write and maybe knit a little.

I'll update again later!!!


-- Carla's on the go! Post from her iPhone.

Tuesday, September 7, 2010

Rants and Revelations

On Sunday my friends and I went to Bumbershoot, a music and arts festival in Seattle.  There was one show I really wanted to see - the Axis Dance Company.  They are a dance company based out of the Bay Area, and they have people with physical disabilities dancing with able-bodied people.  It was amazing to see.  I figured it would be pretty amazing, but I had no idea it would touch me so deeply. 

But first, my rant.  The last thing we saw at Bumbershoot was a comedy show.  Since I was in the wheelchair we all sat towards the back at the special wheelchair section, even though I got out to sit in a regular seat.  The first two comedians were great - I laughed and had a good time.  It was the third comedian who grated me the wrong way - so much so I need to rant about it in a blog post. 

If I remember correctly, he started out funny.  Maybe he didn't, I don't know.  Either way, shortly into his performance he started talking about airport security and how it really bugs him when someone in a wheelchair can get out to go through security.  He went on to make more jokes about the wheelchair and how anyone can use one if they want.  I was so mad I nearly cried.  I wanted to heckle him, but he had already turned the audience laughing at the first person who had heckled him. 

He made me doubt myself.  I don't often care what other people think of me - especially strangers.  I don't care if they judge me for getting on the plane first or riding in a wheelchair and then standing up to shop.  Have you ever noticed how hard it would be to see things or reach things while you're in a wheelchair?  I have. 

He made me doubt myself.  I started to think about whether or not I really need the wheelchair now that I'm doing better, and I started to wonder if my using a wheelchair is an injustice to all other wheelchair users - people who can't stand up to shop or walk to their seat on the airplane.  He made me feel little and unworthy.  He made me feel like less than a person.  And then as I sat there I thought about how the people who can't get out of their wheelchairs would feel.  I just kept getting more and more angry.  And I didn't find the rest of his show funny either - probably because the first part made me so unbelievably angry. 

One reason it made me feel so horrible was because what I experienced in the morning. 

The Axis Dance Company made me feel like I could do anything.   When I think back on it I want to feel that again.  As I watched them dance I realized that I can do whatever I want.  With my dancing-  I can adjust to my level.  I will salsa at my pace and I think everyone should accommodate me.  I don't know if I can get a large group of salsa dancers to do that, but maybe I can.  I thought I should start a ballroom dance group for people with disabilities or older people who want to dance at a slower pace.  I have a few dance instructors in mind who might be willing to help me with that.  I'm thinking of leaving the position of secretary - or at least delegating the work to someone else so I can work on my life goals more. 

The dance made me feel like getting my place completely organized is within reach, as is finishing my book.  I want to advocate for patients, or rather teach them to advocate for themselves - and I have a few friends I know who can help me get started with that. 

So all day I was on a high from that performance.  I felt powerful, strong, and self-reliant - despite the fact that I was relying heavily on my friends to push my wheelchair.  But there were several times I got out to shop for Christmas gifts and a couple things for myself. 

And then the comedian crushed my soul.  But after a long talk with my mom, I have realized the comedian was uneducated and discriminating.  He is not the type of person I would want to be around.  And maybe my friends laughed at his jokes, but that doesn't mean they don't care about me or want to understand.  They can't understand.  Living this way can be incredibly frustrating at times - like yesterday when I had to sleep all day - but it can be incredibly rewarding too. 

This is just another example of how I know my CF is a gift.  I am able to see the world through the eyes of others, and have compassion for all types of people.  Even the people who makes jokes at the expense of the disabled - I have compassion for him because he has no idea what he is really making fun of. 

And after I think about the comedian and go back to the Axis Dance Company, I feel empowered again.  I want to work towards helping more people.  I want to dance as much as I can.  I want to live my life to the absolute fullest.  And no one should or can make me feel otherwise!

Monday, September 6, 2010

Day 3 in Seattle

Today is my third day in Seattle. And yep, that's about right - I can go for 3 days and then rest for at least one.

Yesterday I had some revelations, and was also very upset by something, but I don't have time to Rant and Reveal right now. I need a nap. I'm feeling very depressed because I need to rest and very sorry for myself because I think I was hoping this wouldn't happen. I was hoping to have lots of energy and not have to rest and nap like I do at home. But I'm the same person here as i am at home, so I can get through it.

-- Carla's on the go! Post from her iPhone.

Saturday, September 4, 2010

Waiting in an Airport

This is me during a really long layover at MSP. There's not much to say about it except I was bored, missed flying with someone to talk to, and oh yeah, I almost missed my flight because I was a dufus sitting alone at an empty gate one hour before the flight. So I asked someone, and the gate had changed.

So I didn't really nearly miss the flight (if I had to walk I would have, but at MSP they have golf carts that go around for the disabled). I nearly missed pre-boarding. I like my extra time to walk down the jet way. I like not being pushed by others with their rolling suitcases. And I like securing spots in the overhead bins for my carry-on and my medical bag. And then I get what I'll need for the flight and put it under the seat with my purse. So i almost missed that, but I didn't.




-- Carla's on the go! Post from her iPhone.

Hotel Royalty

I feel like a princess. I'm in Seattle. I am staying with friends for 10 days (probably way past my welcome! Didn't someone once say 'fish and house guests start to stink after three days'?), and there are other friends staying here too for various lengths of time. At most there will be seven people here in this two bedroom, one bathroom home. Thank goodness for the basement!

So I feel like a princess - because I am staying in the 2nd bedroom the whole time. My hosts are worried there might be some creepy mold hidden in the basement, so they won't let me stay there. I'm very happy.

My hostess, E, put enough blankets on the bed to suffocate me, just so I'd be warm enough.

And my hosts - two of the best friends I have. And the four other people joining us? Also amazing friends. These are friends willing to do my chest PT and push me in a wheelchair around San Francisco. Have you heard about the hills there? Because they are huge. And Seattle? Also big hills. And these friends are willing to push me around again so I can keep up with them and see as much as possible.

I can't wait for the fun to begin - and maybe that's why my body woke me at 6am. No matter what time zone, I wake up at 6am. Big pain because I came in on a late flight and didn't get to bed until after two. Hopefully after writing a nice, long blog entry I'll sleep like a baby for a couple more hours. I don't want to wake my hosts at this ridiculous hour so I can eat and then go right back to bed! Because that's what I have to do at home when I stay up late - nap during the day.

I can't wait to spend 10 glorious days with some of my best friends in the world E, J, M, P, K, and Gancl. Don't worry, that's her nickname.

But for right this moment I need to calm my excitement and drift back to sleep at Hotel Royalty - where I really feel like a princess.


-- Carla's on the go! Post from her iPhone.

Wednesday, September 1, 2010

Off With Their Heads!




This is the photo that got me in sooo much trouble with that serial killer.  Goodbye Sweet World!  YES I blacked out the licesnse plate.  Because I'm a MS Paint WIZ!

At least it's a funny photo...


Making the Serial Killers Mad

Oh what a day! And it's only 9:20am.

I woke up at 6am - a little earlier than I needed to, but I like to get things done in the morning before I go to work.  I was looking through a basket where I keep miscellaneous hostess gifts, when suddenly I had no more light.  I was a dufus and couldn't figure out who turned the light out on me... and then it hit me:  The Power Is Out.  Why was this a big deal?  Well one, it's raining/cloudy, so I get no sun to make my house have some light.  I can't have toast for breakfast.  I can't use my microwave.  And worst of all, I don't have enough light in the bathroom to take a shower or do my makeup.  So I'm a grungy mess with a bandana in my hair... that part will come later. 

So during the time I usually watch a little TV or blog or read stuff on the internet, I am without power and knitting by candlelight.  I got one row done in 20 minutes.  The Dress of Doom is going to take FOREVER.  See my craft blog for more on the DRESS OF DOOM. 

So now I'm driving to work.  I end up behind a car with a plastic head in the back window - seriously.  It looks like it could belong to a manequin or a crash test dummy, and it's definitely not a babydoll.  It's just a head rolling around in the back window.  I find this incredibly amusing, so at a stop light I pull out my camera and snap a few photos.  Then as I'm driving along I realize that the guy in front of me is taking photos of something behind him.  Hmmm.  I realize it's me, so I wave - grungy bandana and all.  Then he's sticking his arm out the window taking photos of me... and then he turns right and completely stops his car as I drive by to keep taking photos.  HE STOPPED IN TRAFFIC TO KEEP TAKING PHOTOS OF ME.  And because I'm related to my mother and I hear her jump to this conclusion all the time, my first thought is, "SERIAL KILLER!"  Oh my god, I just pissed off a serial killer.

I panic.

And then I calm down a little and assume it's NOT a serial killer.  But what the hell?  Is it an undercover cop?  With a head rolling around in the back window and a little blue camera?  And no laptop or uniform?  No.  So, it's just a creep... Did I do something wrong?  I just took a couple photos - and for all he knows I could have been taking photos of the sky.  Duh.  Is that illegal?  Maybe not the best idea while driving, but it was at a stoplight.  So, he's just a creep... a creep with my face and my license plate.  Is he going to report me to the cops?  What will they do? I can tell them he stopped traffic to keep taking photos of me and was taking photos of the car behind him while driving.  That's definitely worse than the few photos I took.  Is he going to track down where I live and follow me for the rest of my life? 
Is he a serial killer?  Oh my god, I pissed off a serial killer.

I panicked just a little.  All before 8am.

THAT made my morning interesting.  Too interesting.  I have his license plate just like he has mine... But if he's a serial killer, I don't think that's going to help me much.  Might help the police though.  So I'll print off a photo and put it somewhere...

I arrived at work a little late because of traffic, and took the baby on almost an hour walk - which is perfect for me because I need the exercise.  Perfect for the baby because it entertains him.  I love taking photos of things on our walk because I love to take photos, but this morning I thought twice about it because you never know when you'll piss off a serial killer. 

Tuesday, August 31, 2010

One Year Free

I'm officially 100% IV Free for One Year.  To celebrate, my parents and I threw a party on Saturday.  It was wonderful - almost all my favorite people were there, and everyone made it so special.  It was better than any birthday party I've ever had because it had so much more meaning to me. 

It was like giving me my life back. 

A friend of mine told me tonight, "You really know how to live, girl...".  And THAT made my night because that is what I want to be known for and eventually remembered for - knowing how to live.  Also, knowing how to love.


This post is dedicated to everyone who helped me get here - ONE YEAR IV FREE.  


To Mom and Dad because they do everything for me.  They always have.  They fight just as hard as I do, if not harder.  I love them with all my heart.  My one wish has always been for them to worry less, and hopefully now they can worry a little less.  


To My Brother for being my little JerkFace.  You understand me and my CF because you've lived it too.  I'm sorry you had to - you got healthy genes and had to live alongside CF anyways.  You are my strength when other people aren't so there for me.  Thank you for getting me here.  I know I called you crying almost daily for a long time this spring - and I'm sorry, but you were wonderful.  The perfect panic attack cure.  I'm so proud of the human you are becoming.  I love you, Dar-Dar.


To My Bonus Siblings and My Bonus Nephew: I could write pages about all you have done for me.  Chris, Kyra, Luca and Sarah Lynn - my life would be empty without you.  You make me smile daily in some way and you're right there to live my life with me.  Here's to the family you CAN pick!


To My Friends:  Thanks for loving me.  I love you, too.  Let's keep living life!!!


To Dr. Green: You said it was very unlikely that I would ever make it 6 months, let alone a year, without IV antibiotics, and here I am. I was 18 when you told me that, and now I'm 24.  I think we both know we didn't know if I would make it to 24 without needing a transplant... and I think we're both very glad I don't need one right now. Thank you for being the best Pediatric Pulmonologist ever.  You treated me with love and compassion for over 17 years and I've been searching for that kind of care ever since.  I think I've finally found it at another CF care center.  Thank you for being a role model for the kind of treatment and care I deserve.  And I made it a year!!!


To the hospital staff and doctors: Here is one line thanking you all. 


I did it, guys!!! I'm ONE YEAR FREE!

CF as a Gift

Cystic Fibrosis is a gift. What it has given me is possibly more important than anything I could have learned if I were healthy.

I have learned to appreciate life. I appreciate and love the people around me as much as I can. I want to experience things and do as much as I possibly can.

CF has given me the opportunity to grab life by the horns and make it mine. It has taken me a long time to figure out what way I want to steer the horns of life, but I think I'm starting to figure it out.

I want to help people. I've always wanted to help people. When I was little I wanted to be a pediatric pulmonologist so I could help other children with cystic fibrosis. I've always wanted to help other CFers, but recently I've realized I just want to help people in general.

I want to be an advocate. I want to help people navigate the craziness that is the medical world. Teach them how to self advocate, and get through the insurance hoops. I want to help people get to a therapist and/or a psychiatrist because I've seem my share and know how to find a good one. I can help people organize their medications and figure out a way to remember how to take them.

I want to spend time with children and see the world through their eyes. I want to help mold them into better people. I want to share their joy in new things and comfort them when they are sad.

Most of all, I want to live and feel like I'm skipping joyfully through life. And right now I have that part down.

-- Carla's on the go! Post from her iPhone.

Thursday, August 26, 2010

Dating Dilemma

Here's an update on the Dating Situation. 

Last night I went on a very good first date! Yay me! I didn't know such a thing existed.  Usually they are okay, or awkward and then I dump the guy by the end of the week.  I don't think that's going to happen this time... but we'll see.  It hasn't been a week yet. 

My dilemma is this: there are too many guys.  Right?  Who ever thought this would happen to ME?  I'm the sick girl who can't get a date - let's mend that - I'm the sick girl who can't get a SANE date.  There was that guy who said we could have kids and the surrogate would be his 2nd wife and she'd live in a different wing of the house and help me raise all our children.  He was a winner.  The kid with no job living in his mother's house. 

So too many guys.  I have three other guys who want to meet me.  I want to stop communicating with guys just because this is getting overwhelming.  I'm supposed to be rejected again and again because of my health and post it on my blog - that's what I DO.  What if I have to choose between more than one nice guy?  I don't know how to do that! 

On the up side, I did have a good first date!

Sunday, August 22, 2010

Reasons for Rejection, II

Here is a reason I rejected someone.

The question is "What are you most passionate about?"
His answer:

"I love sports but I am probable most passioniate about helping people, thats a big reason why I want to be a police officer. Probable sounds a little too good to be true but it is."

Your spelling skills leave a little to be desired, PROBABLY.

Friday, August 20, 2010

Reasons for Rejection

So I'm going to post funny profiles, awesome reasons for rejection and other crazy things that happen during my eHarmony experience. 

Here is my first online "we can't date because" rejection:

"I'm having fun emailing you too... but i must say, i'm really bummed about the anti-kitty thing... Cats are such a huge part of who i am, and my identity, and there's no way i could ever be without them running freely around. That's not exactly a good thing when they're kinda life-threatening to you :(

Beyond that.... there's no easy way of saying it, but it frightens me to enter into a potentially serious relationship with someone having a serious illness. For the last almost 30 years i've grown up watching my mother take care of my increasingly disabled father. I won't get into the details - but... i know its not something i could do."

The second part I understand... and that's fine with me.  I wouldn't want to be with a guy who knows he couldn't handle me being sick-ish ;-)

It's the FIRST part that cracks me up.  The kitty part - I love the way it's worded and that kitties are part of who he is.  Hope it makes you laugh as much as it made me laugh. 

Wednesday, August 18, 2010

Almost There!

In less than two weeks it will be ONE YEAR since I have had any IV antibiotics.  Sometimes, I still can't get my mind around this.  Part of me feels so free, and another part of me feels really tied down - waiting for the bottom to drop out.  Waiting until I'm sick again.

And I know that is not how I want to live my life.  I am so grateful for everything I have going for me right now.  I want to live my life to the fullest for every CFer who is still in a hospital bed somewhere.  I want to fight for research and CF awareness.  I want people to know how isolating this disease is and how much we need to talk to each other to get through this. 

But I still feel guilty sometimes.  What did I do to deserve this good health?  Why did people I care about leave this earth?  Why wasn't it me?  Do I have a purpose in still being here?  Am I as inspirational as those we have lost?  I hope so. 

I feel blessed because I am healthy.  I feel sad because I'm the only one.  I wish I could fix others and help myself at the same time - but I guess it doesn't work that way. 

Monday, August 9, 2010

My Parade!

Dear Mom,

This is my parade.  It's my life, and I'm going to live it the way I want to.  It doesn't mean I don't love or need you.  It means I want to be an adult, because I'm 24. 

I found a little song that fits this pretty well.  It goes like this:

Don't tell me not to live,
Just sit and putter,
Life's candy and the sun's
A ball of butter.
Don't bring around a cloud
To rain on my parade!
Don't tell me not to fly--
I've simply got to.
If someone takes a spill,
It's me and not you.
Who told you you're allowed
To rain on my parade!
I'll march my band out,
I'll beat my drum,
And if I'm fanned out,
Your turn at bat, sir.
At least I didn't fake it.
Hat, sir, I guess I didn't make it!
But whether I'm the rose
Of sheer perfection,
Or freckle on the nose
Of life's complexion,
The cinder or the shiny apple of its eye,
I gotta fly once,
I gotta try once,
Only can die once, right, sir?
Ooh, life is juicy,
Juicy, and you see
I gotta have my bite, sir!
Get ready for me, love,
cause I'm a commer,
I simply gotta march,
My heart's a drummer.
Don't bring around a cloud
To rain on my parade!

I'm gonna live and live now,

Get what I want--I know how,
One roll for the whole show bang,
One throw, that bell will go clang,
Eye on the target and wham
One shot, one gun shot, and BAM
Hey, Mister Armstein,
Here I am!
I'll march my band out,
I will beat my drum,
And if I'm fanned out,
Your turn at bat, sir,
At least I didn't fake it.
Hat, sir, I guess I didn't make it.
Get ready for me, love,
'cause I'm a commer,
I simply gotta march,
My heart's a drummer.
Nobody, no, nobody
Is gonna rain on my parade!

Love,
Carla

Monday, July 26, 2010

A Few Things

This is a post where I write about a few things.  Goals, recent developments, etc.

First, I have been doing the 365project since around Memorial Day - all the photos are on my phone, but when I updated the software, I lost all the 365 data- like what days the photos went with and what I said about them.  That's frustrating.  So I'm starting again - and trying to reconstruct the last couple months.  This time I am backing it up on 365project.org.  Hopefully this will be good.  Once I get it all set up, I will post  the link to where you can see the lame photos I take with my iPhone :-)

I'm hoping to post some photos from my digital camera too, since it takes much better photos. 

Next, I have some goals:

Clean the house
Finish my quilt
Finish the two scrapbooks

That's about it for now, but that is what I want to do during August - and August is shaping up to be a VERY busy month!!!  I'll have to schedule days where I sleep all day, so I don't know when I'm going to schedule in all the cleaning I need to do!!! 

That's about it for this post.

~Carla

Tuesday, July 13, 2010

THE Post.

This is it.  The post I've been wanting to put up since November.  This is The Mannitol Post.  It's a long story. 

Last summer I decided I would participate in two different clinical trials - one for inhaled powdered Cipro, and the other for inhaled powdered Mannitol.  I did the Cipro study first.  It was a month long and I had to show up for PFTs and check-ups every week, but it was only a month.  No. Big. Deal.  The next study was going to be more challenging and taxing.  Remember, I had agreed to babysit more regularly starting in August, and I was loving the babysitting.  I even did some babysitting where I had to take my afternoon IV dose with me.  That was a rough week.  Actually a rough two weeks.  I did IVs for the first time all by myself - with no help from anyone.  I did the IVs at the end of the Cipro study, so I had to wait to start the Mannitol study. 

The Mannitol Study.  Let me start off by explaining what Mannitol is.  It is FDA approved for other uses.  They use it IV to reduce brain swelling.  Most chewing gum is coated in powdered Mannitol.  It is not illegal to own Mannitol (I found food-grade Mannitol on the internet and they sell it by the pound).  This study is to approve a different use for Mannitol.  In this study, powdered Mannitol is inhaled into the lungs via capsules put into an inhaler.  The study was a year-long commitment.  In the first 6 months you would either have the drug or a placebo.  The second 6 months is what they call "open label," meaning everyone has the drug. 

I didn't think this would be a huge commitment.  Inhale 10 capsules twice a day for a year.  All for the sake of science and my health.  Note the second part of that sentence.  I participate in studies for the selfish reason of benefiting my own health in addition to doing it for science and to help other patients. 

When I got into the study, I realized it was going to be a MUCH bigger commitment than I originally thought.  Mainly because of the JOURNAL.  This was going to be the JOURNAL FROM HELL.  In all honesty, I was going to be lazy about it.  They wanted you to record ALL symptoms - colds, sinus stuff, sprained ankles, etc.  I really wanted to say, "Stubbing my toe at least once a week is in NO WAY related to your study."  But I agreed.  Then I was told to record all doctors visits, all nurse visits (remember I have a daily nurse who does manual chest PT for me), and every time you pick up medication at the pharmacy.  I thought this was ridiculous.  I try to limit my pharmacy trips to once a week - but it's sometimes more.  I honestly thought I was going to spend most of my free time filling out that journal and I would never again blog or write in my personal journal.  I wasn't enthusiastic about the JOURNAL FROM HELL, but I agreed.

For the study, they have you do a tolerance test to see if you can handle the drug.  It involved lots of PFTs and taking the medication.  One half hour after I took the medication my PFTs (lung function tests) had improved more than 10%.  TEN PERCENT.  I hadn't seen numbers that high in years.  It was unbelievable.  So I agreed to do the first 6 months not knowing whether or not I had the drug just so I could get to the second 6 months to have the drug!

A week after the tolerance test I was double-blinded and given my stuff.  Again, PFTs were done with your substance, and then for the 30 minutes after the test I had to collect all the sputum I coughed up.  Both times I did PFTs - with the tolerance test and the first dose of 'Mannitol' - I coughed really hard.  I also coughed up tons of gunk.  The second time I collected all this gunk and it filled a sputum cup half full.  Completely gross.  I wish I had taken photos so I could show you the complete gross-ness of this sputum cup.  I knew I had the drug because of the way I coughed and because my lung functions again went up more than 10% in 30 minutes.  I knew I was holding onto a miracle drug.  I just didn't know how much trouble it would cause me.

I did exactly three doses of Mannitol as I was supposed to - 10 capsules twice a day.  I woke at 6am on Saturday with a cough I couldn't get rid of.  This was the hardest I had ever coughed (saying a lot for a CFer... I pretty much cough for a living!).  My lungs ached and the muscles in my chest and abs were quivering from working so hard.  I tried everything to sooth the cough because I wanted so badly to continue with the study.  Cough drops.  Eating. Drinking water.  Sitting in a steamed bathroom.  Doing all at the same time.  And nothing worked.  After six hours I finally gave in and took cough syrup with codeine in it, which finally soothed my cough.  But I knew I couldn't take the Mannitol the way I had been instructed to.

I couldn't believe the cough.  It's hard for me to put into words how horrible and how strong the coughing was.  My upstairs neighbor came down several times and knocked on my door... and I was coughing too hard to answer.  Finally I checked the door and there was a small blue Post-It that read, "Please turn down your sub woofers. It's shaking our walls."  I had nothing playing because I was trying to calm my cough.  My cough was shaking the walls in a concrete building.  Lovely. 

Since I couldn't tolerate the drug the way I was supposed to take it I had to drop out of the study - which means you need to return the un-used drug.  But I read through the papers I had signed, and no where did it say I was required to return the medication.  I bet they've revised study documents now, but nothing I signed said I had to give it back - so I didn't.  Actually, I waited a month or two to even tell them I was dropping out of the study.  Because I needed this drug.  I needed to make it work for me.  I couldn't give up the lung function percentage that it was giving me.  My lungs will never be completely at full capacity because I have scarring, but I want them to be the best they can be. 

Before I told them I was dropping out of the study I played around with dosing.  First, fewer capsules twice a day.  That was too much - the horrible cough continued.  Then once a day, every other day, once a week, and finally I settled on 6-8 capsules once every two weeks.  That's a big difference from 10 capsules twice a day.  But my lung functions maintained.  And even more importantly - I FELT AWESOME.

I told my study coordinator I was dropping out of the study and I refused to return the medication.  She was furious with me.  We had several long circular conversations where she tried to convince me I needed to return the medication, and I tried to convince her I needed to keep it.  I told her I'm fighting for my health - for my life.  It was time for another hospitalization, and I wasn't even close to needing IVs yet.  At one point she said, "I understand..." and I interrupted with, "No. You. Don't.  When was the last time you had to spend two weeks in the hospital for IV antibiotics that damage your kidneys, liver, and cause hearing loss?  I am fighting for my life - the right to have a more normal life, and if this medication keeps me out of the hospital for even 6 months at a time, I am going to keep doing what I'm doing.  Because 6 months without IVs is better than having to do them every 3 months." 

After that, she stopped calling.  They sent a certified letter, which I refused.  I knew that was all the action they could take against me. 

I knew I was on my own.  I felt black-listed.  I knew my research coordinator was talking about me to other research coordinators (I have a friend who works in the department and overheard these conversations).  At one point she said, "Well, you know, her father is a psychiatrist and she's on a lot of psych meds."  THAT pissed me off.  I understand that I complicated her job and that I was a pain in the ass - but to call me crazy, and to bring my father into it is INSANE.  The fact that my father is a psychiatrist has NOTHING to do with the fact that I have PTSD, Depression and Anxiety.  See my little blogging profile - those aren't related to my CF.  Anyways, that pretty much ended any desire I had to explain myself to her - or to have anything to do with that CF clinic.  I just assume that the doctor who was in charge of the study (who is/was my CF doc in my town), isn't my biggest fan.

So now the months are flying by - I reach 6 months without IVs... 7, 8, 9... and I finally decide I need to see a CF doc and finally see if my lungs are maintaining number-wise.  I was healthy - I AM healthy, but I wanted the numbers to prove it.  So I make an appointment at a clinic 2 hours away, and yes, my numbers are maintaining.

The same week I went to the far away clinic, I went to a CF Adult Group meeting.   There a couple people criticized me.  I was told I could go to jail, I might as well have a ton of pot in my house, that I'm selfish to 'ruin' the study.  And at first I cried.  I even wrote about it here - why I'm scared to write about the Mannitol.  And now none of that matters to me.  The opinion of those CFers can't matter to me - because I am taking care of myself the best I know how.   

I am living my life, I'm loving my life, and I don't care what I had to do to get here.  I had to do what I had to do.  I found something that works for me, and I'll be damned if I'm going to give it up because the FDA says I should. 

It's 11 months since I started my last round of IVs.  And now I feel it's safe to plan my One Year Sans IVs party.  I'm celebrating my life, the people I love, and the amazing drug that helped me beyond my imagination. 

Here's to Mannitol - my wonder drug. 

Monday, July 12, 2010

Closet and Bedroom Photos

This is my clean closet and bedroom!!!




















-- Carla's on the go! Posted from her iPhone.

Sunday, July 11, 2010

Clean Closet

My closet is CLEAN.  C. L. E. A. N.  Can you believe it?  ALL of my clothes (minus the ones that need washing...) have a home.  That's right, there are NO clothes on the floor.  They are all either in a drawer or hanging in my new beautiful closet. 

Okay, yes, the dining room is slightly more cluttered now, but not bad.  I have a bin of shoes and a huge bag of clothes to donate.  I have piles of clothes for my bonus siblings Kyra and Sarah. 

And I was so excited to call my parents and tell them about my new closet and how my clothes finally have a home and I can keep it this way... and my mother says, "Well, we'll see."  Because she has absolutely no faith in me whatsoever.  None. 

Honestly, I'm not making this up - if there's something that needs doing, my mother doesn't believe I can do it - BECAUSE I'M NEVER GOOD ENOUGH for her. 

So to give her the giant finger, I'm doing a million loads of laundry so everything that can be washed will be clean, and then PUT AWAY.  And I babysit this week, so I'm already doing more than my mom does in a week. 

She can bite me.  And accomplishing all this will make me happy.

A big THANK YOU to my bonus brother Chasie - you are the best.  And even though you made fun of my stuff the whole time, you got it all done.  I love you.  My closet is functional.  (Photos to come).

Tuesday, July 6, 2010

Bonus Siblings

The 4th of July weekend was jam-packed for me.  I had such a great time with everyone and doing so much stuff!  It was party, party, party and hanging out with people I hadn't seen in a long time.  It was fabulous!

I have finally come up with a term I really like for the really special people in my life - the people who are like brothers and sisters to me, but who aren't technically blood-related.  From now on they are my Bonus Siblings.  These are people I've grown up with, friends since I was very young, and people I'm so close to we may as well be related. 

I'm so lucky to have these wonderful people in my life.  Here's to my Bonus Siblings - Emily, Margaret, Sarah, Chris, Kyra, and Chase.  I love you guys!!!

Dating, or Lack Of Dating.

Here is a great reason I'm not having success with the online dating thing.  Here is one man's profile.  It's so absurd I just had to post it.  This man is 46 and lives in my state - but 46 is too old for me.  He contacted me, and I pretty much just ignored the email.  Here is why:

Tall, dark and handsome I am told by my kids! REALLY! Find out for yourself. I love to be spontaneous, daring and wild when the time permits. Honesty, truthful, faithfulness & good communication are the core for any relationship would you not agree? Someone that would compliment me as I would to her. My kids live with me full time. This is not the norm out there, yes I know! I would never change it for the world. They are my life! LQQKING for a lady to share my life with. They are getting older now and pretty much take care of them selves unless they need money! LOL! My almost 17 year old has three jobs and gets great grades. He loves his PS3 and Rock Band. Lets get to know each other then? I love the outdoors ie// sailing, roller blading, hiking, jet skiing (wave runner), fine wines, cooking, boating, fireplaces inside and outside, and most of all spending time with my family, kids and friends. We have a dog (St. Benard-Spinilli) & a cat. I simply love my job. I own my own company (two actually) and it allows me the freedom and flexibility to spend the maximum amount of time with my kids. I was born and grew up on the North Shore of Chicago. Yes, I am a flat lander at heart! My parents are both from Eroupe. To a Martini bar where the music is loud enough to hear and soft enough to talk to each other. A walk along the lake shore or out to the lighthouse up in Port Washington. I enjoy attending festivals, live bands, concerts, etc. Lets meet and see. I LOVE to cook Cajun, Thai foods myself as well as many other things. I have been told that I am a good cook! My best critics are my kids and they love my cooking. Not bad hey! I enjoy Boston Legal, CSI, Grey's Anatomy type of shows. I love to get up on Sundays and go to a coffee shop alone or with friends. I enjoy reading the New York Times a lot as well. Shall we meet there? !? !

Now, Bless Your Heart if you read that whole thing.  It's like his brain exploded on the keyboard and that is what came out.   Aaaand he comes with kids!  The youngest being 17!  I am in my early 20s.  Let's say it together "AWKWARD."

Friday, July 2, 2010

Life, or The Post Before THE POST

I'm deciding what I want in life.  I am figuring out what is most important in life.  I am figuring out how to maintain my current good health and trying to decide what to do with it - with all the extra energy and time. 

I know, this could be a big, important post.  Or it could be a short little one with some goals.  I'm leaning towards the 2nd option because I need a nap, but I've got some very important, mind-blowing ideas rattling in my head and I want to get them out there. 

I want to keep babysitting. 
I want to be a better dancer.
I want to enjoy my life and have plenty of time for family and friends.
I want to have time for my mindless TV and crafts.
I want to be out there speaking about cystic fibrosis.  I want to speak at CF Foundation events. 

It's that last goal I want to talk about today.  I am different.  I'm different from many CF patients.  I am compliant to a point - if it's not working for me, I won't do it.  I do what works.  I work hard to find what works and then I stick with it.  I work hard to figure out how to be as healthy as possible with all the added things I have on top of CF, and then I work hard to maintain that health.  If it means not doing everything a doctor or a nurse tells me I should be doing, that's okay with me. 

I know my body best - I've had CF for almost 24 years now.  I know what's going on inside me and what is working.  A doctor who has only known me a few years doesn't know my body as well as I do. Currently I go to clinic and see a CF doc who has known me for a year.  I love my new doc because she listens to me - and that is most important in a doctor.  They need to listen to you and get to know you as a person.  I miss my peds doc who I saw for 17 years.  He knew me - we'd probably fight now because I'm so head-strong, but I miss him.  The point is, after I transitioned to adult CF clinic, I tried doctor after doctor to find one who would listen to me.  I ended up driving more than an hour to a different clinic to find a doctor who fits me and who will work with me.  I found what I needed. 

That makes me different.  It probably makes me someone the CF Foundation wouldn't want speaking at events.  I don't do hours of treatments each day - I do a 1/2 hour.  I take all my pills.  And every other week I do Mannitol (yes, I'm still working on THAT post).  This is what is keeping me healthy - this, and my active lifestyle.  And by active I mean I babysit, I dance occasionally, and I work on my crafts and keep up with my life.   I hang out with friends and I do chores.  Many of these things I couldn't do a year ago.  One year ago I was spending my time waiting to do IVs, doing IVs, and then waiting to do IVs. 

Which brings me to another point. 

Happiness.  I found it. 

I am so happy I barely understand it.  I also have a hard time understanding why all the 'healthy' people aren't as happy as I am.  It's because I never expected to be healthy.  I didn't even dream about one day being this healthy because in my mind it was an impossible.  I knew I was doing round after round after round of IVs, and going to slowly decline until I was at the point where I needed to be evaluated for a lung transplant.  That was the reality I had accepted.  And I was determined to make that reality fun and happy - and I did.  I traveled to Europe, San Fransisco, and New Orleans.  I made sure I saw my friends as often as possible because I knew I wouldn't always have the energy to go somewhere and hang out.  With what little energy I had left I would slowly work on craft projects.  And that made me happy.

So when I found Mannitol (STORY TO COME SOON!), I couldn't believe how healthy I felt.  I didn't think it would last.  And now that it's lasting and looks like it might last a long time, I'm ridiculously happy with everything I do.  Dancing more makes me giggle and when I babysit I can't stop smiling when I chase after the kids.  Even crying kids make me happy because I have the energy to deal with them.  I love reading books to the kids because I have the breath to say long sentences without pausing.  And it makes me laugh. 

I have the energy to be the silly person I am inside.  I am the social person I wanted to be when I was sick.  I can do the laundry - and it makes me so happy I call my mom just so I can cheer and have someone cheer with me. 

And this is why I feel I am a happier person than most people I encounter.  I am living a life I never dreamed of having - and it's better than any dream I've ever had.  Now I'm dreaming about my future and what it might hold - and my dreams aren't just about a short wait for transplant and few complications after.  I used to dream that I would wake up from transplant with almost no complications and be walking the same day - THAT was my ultimate dream.  Now my ultimate dreams include finishing college, having hobbies and a career, and dare I mention it - a family. 

A. FAMILY.  Like, with kids living in my house.  I haven't dreamed about having children since I was little.  Since before I knew how hard a pregnancy could be on a body and before I knew how hard it is for CF women to conceive.  Don't get me wrong - I'm not dreaming of biological children.  I'm dreaming of adopted children and a full-time nanny to help me because I still don't have the energy of a 'normal' person and I need more sleep than average.  So it's a little bit different dream - but it exists in the back of my mind, and that's a little scary.

So right now I'm sticking to dreaming for the next couple months.  I'm dreaming of a completed quilt, an organized house, a fun party to celebrate one year of amazing health, and a successful trip to Seattle in September.  And that's more than I could dream about last summer - which makes me so happy.

Friday, June 25, 2010

Why Not

I haven't posted about the Magical Drug of Magic-ness because I am a chicken.

Last night I went to my CF support group and I got some backlash from a couple people. I was called selfish and a criminal. I ended up crying. One person was generally concerned for my well-being and making sure I'm still going to a doctor. This whole thing made me frustrated. I was hoping to get applause because I'm doing so well.

This is why I haven't yet written here about the drug. I'm scared my readers will scream back with negativity. I realize I don't have that many readers - my dad, Chris and Kyra, and a couple others. *Meh*. I know they support me 1000% so I really shouldn't worry what other people think of me.

But I do worry what others think - at least a little.


-- Carla's on the go! Posted from her iPhone.

Wednesday, June 23, 2010

Clinical Update

I have switched clinics.  I now go to a clinic 1.5ish hours from my house instead of the one 15ish minutes from my house because if I drive 1.5 hours, I get to see a doctor.  And a nurse, a social worker, a respiratory therapist, and a dietitian.  Pretty good deal. 

Here I only got to see a nurse, a pharmacist (REALLY no help at all - especially when she would criticize my psych meds.  Seriously?  You are a pharmacist in a CF clinic.  You think you have the authority to criticize what my psychiatrist has prescribed me? Shut up.), MAYBE my social worker if I was there on a Wednesday, and the nurse practitioner.  Note that last one.  A Nurse Practitioner, while helpful, is NOT a pulmonologist.  I am sorry.  You did not go to medical school, please send me the person who did.

Also, I got into some trouble at my home clinic because of an investigational medication and me refusing to give it back even though I dropped out of the study... and Yes, that IS part of the story of the Magical Medicine of Magic-ness.  So I have no idea how the people in the clinic feel about me keeping the Wonder Drug.  I have no idea because I haven't seen them since August (I know - BAD CARLA!).  This is the first time EVER I have gone any longer than 3 months without seeing a CF Doc.  Actually, it's the first time in recent years that I have gone any longer than 3 months without IV antibiotics - and I'm approaching TEN months without IVs and have passed ONE YEAR without being hospitalized.  Love it!  *Does the SUPER HAPPY DANCE!!!*

Anyways, back to the fact that I haven't seen them since August.  I haven't been to clinic since August and I haven't done PFTs since October - Again, BAD CARLA!, I know, but I have been feeling great (which is no excuse - go do your PFTs!).  But, clinic hasn't called or written or sent smoke signals to ask where I've been, so I wonder how much they actually care about me anyways. 

So this new clinic - I've been there before.  And I've seen this new amazing doctor before.  And evreything was just as amazing and wonderful as I remembered - and even moreso.  I loved that I walked in and wasn't exhausted by the time I got to the clinic.  I loved my PFTs were the same as in October and better than the last time I was there (which was a year ago in February). 

Everyone was so nice and loving and *le sigh* soooo different from my regular clinic. So.....  So long! Farewell! Auf Weidersein! Goodbye!  Gooooooodbye!  And Good Riddance.  It'll be nice not to have to fight with people every time I want to know how my health is doing or I get sick.  Old clinic, you can BITE ME.  I LOVE new clinic!

My PFTs ROCK.  They are AWESOME and WONDERFUL and SO MANY WORDS I CAN'T THINK OF RIGHT NOW!  I. Am. Healthy.  And I love it! 

So those are two things I love today: New Clinic and My Health!!!

Friday, June 18, 2010

Learning To Live

Learning to Live is hard.  I want to live happy, healthy and free.  I get frustrated when sad things happen.  I feel it shouldn't affect me because I'm no longer depressed.  I need to accept that sad things happen and it's okay to be sad. 

Last week my puppy got sick.  We got Snowball when I was 10 and my brother was 7.  We named him and that's as creative as we could get.  He was white and flluffy, so Snowball made sense.  If I got a dog now I'd name him Einstein, Schrodinger (although that's a better name for a cat), or The Doctor (Doc for short).  That's a different story - the "Why Carla Can't Have A Dog" story. 

So we'd had Snowball for more than 13 years.  He truly was my mom's dog - he followed her everywhere.  But we all loved him so much.  He was the best dog ever!  There was no end to the tricks and quirks of Snowball.

Some of my favorites are when he used to steal my dad's sandal - and it was nearly as big as he was.  Watching him bound with this completely awkward sandal was adorable.  He used to steal cloth napkins off the table - and that's how he got his middle name "Napkin."  Had we been clever it could have been "Sneaky" or "Swiper" because alliteration is cool.  But we were young and "Napkin" made sense. 

I love when he would try and get us to play with his chips (what we called the chew things).  He would throw it in the air and catch it, throw it and go chase it.  It was adorable.  He also loved to play.  When he was a puppy we would play soccer - and that was wonderful.  He had so many awesome toys over the years - Squeaky Penguin, Spider, and Turtle that became yarmulke because he loved to rip out all the stuffing.  There are too many favorite toys to mention.  But Bunny has to be mentioned.  Bunny was Snowball's bedtime pal for 7 years, until he stopped sleeping in the kennel and insisted on sleeping with Mom and Dad. Bunny is a special friend. 

There was always a new quirk with Snowball.  This winter we finally taught him/let him go outside by himself.  And he loved it.  Last summer he ate the cherry tomatoes that fell off Mom's plant.  And he always would tell us when he wanted to go to bed. 

I love him so much - it's hard.  Tuesday Mom and Dad had to put him down after he had a seizure.  Last week we found out he has cancer.  I dropped everything and went to my parents' place - I needed to say goodbye.  But Snowball improved and my brother came up and we all had a good weekend with Snowball.  We even threw him a Goodbye Party and he ate cake and ice cream with us.  When my brother and I left we said goodbye - but we thought we might have a little more time.  It was a shock when I got a call from my mom on Tuesday saying he needed to be put down.  And about an hour and 1/2 later Snowball was gone. 

And I miss him. 

Learning to live is hard.  But maybe this is just another life lesson - I wish this life lesson didn't hurt so much.

I love you Snowball! 

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