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! 

Tuesday, June 15, 2010


RIP Snowball Napkin 12.20.1996 - 6.15.2010

You are the best dog anyone could ever have. I love you forever and always.

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

Sunday, June 6, 2010

Daily Photos

I'm loving the 365 photo idea. I LOVE taking photos, so this is right up my alley! Here are a few I love:

-- Post From My iPhone

Thursday, June 3, 2010

Project 365

I have downloaded the iPhone app Project 365 which encourages you to take a photo every day. I love this idea and I plan on trying to post some of my favorites here. Most of the photos will be take. With my phone, so we know what quality that will be - but i'd like to also try and take a photo or two every day with my regular camera, too.

Here is today's photo. The beds in our hotel room in Springfield, IL. My dad and I are down here to visit my grandparents.

-- Post From My iPhone

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