Posts

Showing posts from 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

Thanks on Thanksgiving

Image
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 definit

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 phon

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

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

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

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.

Mr. Big Turns Two

Image
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

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

The new nap

Image
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.

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. 

Pumpkins and Apples

Image
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 yea

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

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, wri

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 w

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.

Waiting in an Airport

Image
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. A

Off With Their Heads!

Image
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 t

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 y

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/

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

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.

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

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

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?

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

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.  T

Closet and Bedroom Photos

Image
This is my clean closet and bedroom!!! -- Carla's on the go! Posted from her iPhone.

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 b

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 o

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 w

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.

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

Learning To Live

Image
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