Saturday, November 12, 2011


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

Life is good.

Monday, November 7, 2011


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

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

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

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

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

Friday, November 4, 2011

Giving it a Go

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

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

Back in 2008 I wrote:

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

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

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

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

Friday, September 30, 2011

Cystic Fibrosis, as told by two

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

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

And I replied to her:

Meranda - thanks for these words. I feel that we really get life and most others don't. We know not to take the ability to climb a flight of stairs for granted. We know to treasure each and every one of our friends. We're just a little more tuned in. In that way, and only that way is my CF a blessing.
 And  I stick by my words.  Today I am happy and dancing around because I have a little energy to dance around.  I went to the gift shop and bought myself some things because I had the energy to go to the gift shop.  I've only taken one short nap today.  (I plan on taking another, but not a long nap).  I'm happy because my hair is going to get washed - and my boyfriend is going to wash it for me.  And I have a boyfriend.  These are the reasons I am really happy today. 

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

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

Monday, September 26, 2011

PTSD Triggers

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

From the article on PTSD triggers:

"PTSD triggers may be all around you."

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

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

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

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

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

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

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

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

Friday, July 29, 2011

No Regrets

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

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

Thursday, July 28, 2011


I've got new wheels; he arrived today via UPS.  I shall name him Wally, and he shall be my new wheelchair. 

My old wheelchair had a few issues (really just a transport chair - the difference being transport chair has little wheels, new wheelchair has big wheels).  Like the brakes only working when they felt like it.  We may have worn out those brakes on the steep hills of San Francisco and Seattle.  Also there was the brake that would fall and drag against the wheel.  We tried fixing that but couldn't.  And then there was the issue of the little wheels - not so good for off-roading in grass or on gravel, like at a Renaissance Faire.  Rolly (the Rollstuhl - because we first used him in Germany, he got a German name, sort of) has been good and been many places (New Orleans and Colorado Springs are the two farthest away that I have yet to mention).  Now it is time to take Wally for a test drive at the EAA Air Venture - hopefully mostly paving, but hopefully much easier to push in grassy areas. 

Thanks, Rolly, for all the places we've trekked together.  Hopefully Wally will see many more wonderful places and help me do many wonderful things I wouldn't normally have the energy to do.

Wednesday, June 8, 2011

Lactaid Life

I don't know what to eat.  I'm trying to lose weight - about 15-20lbs.  That would suggest a low-fat diet.  I'm diabetic which means low-carb diet, and now I've determined I'm lactose intolerant - so no dairy.  How do you eat a low-fat, low-carb, non-dairy diet?  I have no clue. 

Part of having CF is dealing with the inability to digest fats; I take enzymes when I eat so I can digest fats. Also because of my diabetes I've been trying to eat low-carb and I was getting pretty used to it.  I'm having major problems with my new Lactaid life - I don't like being lactose intolerant and it's really hard to get used to.  Be warned the next part is about farts, poop and other disgusting things because it is the reality of my disease(s).

I figured out I am lactose intolerant because I knew I had to do something about my smelly farts - so terribly smelly I was embarrassed by the noxious fumes.  I was always trying to hide my farts and you can guess how well that went.  Thank ya'll for being too polite to tell me.  My family was not polite about it and ended up hurting my feelings.  It's okay because they helped me realize it was more than just my CF.  I was assuming my CF was the reason for the smelly farts -something I couldn't help or control.  Something I hoped no one would notice.

The other things I needed to figure out were the oily poop and the belly aches.  My fellow CFers will know what I'm talking about, but for everyone else, it's what happens when you don't digest fats.  Again, I thought this was something I had to live with.  And then I remembered that I am an idiot.  A few years ago I reduced the number of enzymes I take with each meal in order to lose some weight.  (FYI, it didn't work.  All it did was cause oily poops, smellier farts and the occasional shit in my pants accident.  Yeah, that's right.  I just said it out loud - I am a grown woman and if I don't take my meds like I should I will shit my pants). 

So I started working to fix the farts from hell.  First, I upped my dose of enzymes, and that helped the oily poops but didn't really touch the belly aches or smelly farts.  Sad panda.  Now what?  My mother (the person I talk about poop with because I can tell her things like, "Oh crap, I gotta go, I just crapped my pants") brilliantly suggested I might be lactose intolerant because both my dad and brother are. 


I tried taking Lactaid when I eat dairy and it helped but didn't eliminate the smelly farts of the belly aches.  Not eating dairy eliminated both.  So now I'm trying to not eat dairy, but I had no idea how hard that would be.  My favorite foods are pizza and ice cream.  My low-fat, low-carb diet was big on low-fat cottage cheese, cheese, and yogurt.  And did you know there is milk in a mocha?  I didn't.  And that cheese danish I ordered yesterday without thinking: also has dairy.  Almost everything I love has dairy in it - so I don't know what to eat. 

Low-fat, low-carb, non-dairy diet.  Try saying that really fast - Low-Fat, Low-Carb, Non-Dairy Diet.  It's fun to say! I think it's even a little more fun if you do a little dance while you say it - or sing it.  "Low-fat, low-carb, non-dairy diet!"  And the little dance burns a few calories, which I'm all about now. 

It's fun to say - but following the diet is really hard.  On the other hand, I'm really sick of being overweight.  REALLY sick of it.  Capital letters sick of it.  I've been on the other end - I used to be underweight and then I became diabetic and gained 60lbs.  I was a healthy, self-confident weight 20lbs ago.  That's where I want to be.  I've decided to do something about it - something drastic.  Besides following my fun-to-say diet, I'm going to exercise.  I have been exercising!  I'm going to exercise at least 1/2 an hour three times a week.  I've already exercised 4 times in the last week and I plan to exercise today.  Go. Me. Go.

My lungs don't like the exercise and my muscles aren't extremely happy either - but they'll get used to it.  I'm now doing my best to lose weight and I won't stop until that scale says 160.  Because at 160 I feel confident, happy and healthy.  At 160 I still have a ways to go until I'm underweight.  I have 30ish extra pounds in case I get sick and lose some weight.  I don't want to be underweight again either. 

When I was underweight every day was a struggle with food.  I didn't want to eat it, but I needed it so badly.  I was threatened with a g-tube by my doctors and my mom made me drink a giant chocolate malt with each meal - which sounds like a dream but in reality it's scary.  A different scary than I'm currently experiencing.  Currently I'm at the "if I gain any more weight nothing will fit me" scary.  And I'm done. 

So I'm doing my best to lose weight so I can be the best me I can be. 

Thursday, May 26, 2011

Goodbye Grandpa

My grandfather passed away in March and I've been meaning to post the eulogy I gave.  Here it is:

Walter was my grandpa.  He was also my hero.  We all knew him and loved him despite any faults.  The man who never spoke above a mumble and who had a comb-over long before I was born.  Some of my earliest and my best memories include Grandpa.  I'd like to share some of those memories.

If I had to pick just one favorite memory, it would be catching lightning bugs at dusk.  When I was young I would spend a week on the Farm with my grandparents each summer.  I remember preparing for our nightly adventure by finding a mason jar and helping Grandpa pound holes into the lid so the bugs could breathe.  I remember watching the twinkling lights above the corn field, getting closer by the minute.  I would run around the yard capturing lightning bugs and Grandpa would hold the jar for me.  Once I had captured about 50 bugs we would take the jar inside and watch them glow.  I would put the jar next to my bed and let the twinkling lights dance me to sleep. 

Some of the most defining memories I have of my grandfather revolve around watching him take care of my grandmother as they got older.  They were married for an amazing 71 years and watching Grandpa take care of Grandma taught me the meaning of real love and loyalty. 

I'd like to read an excerpt from a class project I did for a college English class I took in high school.  For the project I interviewed Grandma and Grandpa and wrote about teaching in the north vs. the south during the civil rights movement:

Three generations in one room: my father, grandfather and grandmother, and me.  Grandpa Walter, hair carefully combed over, reclines in his favorite chair wearing his favorite striped shirt with his favorite slippers.  Bruce, my dad, armed with the tape recorder and microphone, settles in the chair between my grandparents like an anxious reporter preparing to cover a presidential debate.  Grandma Kathryn, in her striped shirt and slippers, sits in a "borrowed" chair from the dining table with her cup of coffee and glass of iced tea.  I sit at the kitchen counter, poised with my pen and paper ready for use, my pen and paper passport to another time - an America I never knew. 

Disjointed reminiscing begins in response to my preliminary questions.  Our road trip begins; on this journey Grandpa is the chauffeur of our "story-mobile," Dad is the back-seat driver, and Grandma is along for the ride.  I am the bug on the windshield - hearing everything, but never speaking above a low hum.

I loved listening to my grandparents tell stories, and am blessed to have been able to capture many of these stories on tape during that interview.

One of my favorite stories Grandpa told me recently - at Christmastime.  He told me about how he and Grandma used to dance to the big bands at the college  -  and that story is especially important to me since I am now a ballroom dance teacher who teaches those same dances my grandparents used to dance. 

In closing, I'd like to share with you a letter I wrote to Grandpa in January to make sure I got my chance to say goodbye.

Dear Grandpa,
Just like the frond of the card says, You Are My Hero.  I'm so proud to be your granddaughter.  I love you more than I could ever express in a card, a letter or a lifetime. 

You're sick right now and I'm pretty healthy.  I'm used to being the sick one - and if I could I would trade places with you so you could be healthy. 

I don't like goodbyes, but I believe if you are lucky enough to know one is going to come you should take the chance and say how you feel.  I've lost lots of friends and family and it's never easy.  Most importantly, I need to know I've told you how much I love you.  You've made such a large impression on my life.

I remember once watching a show about the Golden Gate Bridge with you and you were able to tell me more than the show.  I'm in awe of all that you have accomplished - from simply living to see your 90s, to being married 70 years, earning your PhD, being a wonderful father, grandfather, great-grandfather (before I was born!), and recently a great-great-grandfather.   Most of all I'm impressed at how nice of a person you are.  That's what I want to be most of all - a nice person like you.

I've very nearly run out of room on this card so I'll end-  even though I could write for a very long time - with a Thank You.

Thank you for being a wonderful grandfather.
I love you, Grandpa. Now and Always.

Your Granddaughter,


Lately I've been feeling really lucky. 

A woman I knew online died.  She was my age and had a double lung transplant but didn't have CF.  The headline on her blog is "When life hands you an illness...spread it."  I didn't know her well, but I did read her blog - and it's hilarious.  I think illness makes you funny.  It can make you profound and wise, as well, but the CFers I know are hilarious.  Especially my friend Lauren.  I've been thinking about her a lot lately, and I know she's not doing so well.  Even though she's pretty sick she can still make me laugh really hard. 

One of my favorite memories of Lauren is going with her and a friend to Perkins.  Our waiter was "Sean" but she kept calling him "Seen" because of the way his name is spelled.  I laughed so hard I nearly peed my pants that night - and it's always that way when you're around Lauren.  I would love to be that funny - maybe someday if I'm that sick I will be.  Maybe it's something you learn from being so sick all the time. 

I'm so lucky it makes me cry sometimes.  I'm able to work part-time and spend time with my family and friends and I feel like I'm truly alive.  I haven't always felt this way; when I spent all my time waiting to get sick, for example.   But now I don't focus on breathing or how difficult it is to breathe because I'm not so worried about needing IV antibiotics and being hospitalized. 

There are times I'm actually bored - and not because I'm laying around sick.  It's because I'm not really sure how to spend this energy I have.  Sometimes I'm torn between spending the energy or saving it up.  Most days I feel like spending it - I have it, it's a gift, I'm going to use it! 

I feel so lucky - and it's an amazing feeling.  Try and think about why you're lucky, I guarantee it can make you feel so much better. I may not be funny, but I am lucky. 

Thursday, May 19, 2011


May is busy.  I am attending 2 graduations, Great Strides, and trying to balance work and my life.  This spring feels like my graduation - a graduation into life.  I'm being thrown into the realization I'm an adult and I'm not so sure I like it.  When I was little I used to say that I wanted to stay a kid forever.  I'm sort of realizing why that wasn't such a bad idea.  

I'm a grown up.  Are you serious?  You've got to be kidding me.  I'm still 7 and running around the backyard with my friends.  I'm playing with dolls wanting so badly to be 12 so I can babysit.  I'm still 12 and can't wait to be 16.  I'm 16 wanting to be in college.  I'm living in the dorms.  Am I really turning 25?  Why do I no longer consider 25 an adult?

The other day I was driving my car around, listening to new music and enjoying the nice weather.  Then Taylor Swift's "Never Grow Up" came up on my iPod and and as the song played I cried and then cried harder.  The first part of the song is:

Your little hands wrapped around my finger
And it's so quiet in the world tonight
Your little eyelids flutter cause you're dreaming
So I tuck you in and turn on your favorite nightlight

To you, everything's funny
You got nothing to regret
I'd give all I have honey
If you could stay like that

Oh darling don't you ever grow up, don't you ever grow up
Just stay this little
Oh darling don't you ever grow up, don't you ever grow up
It could stay this simple
I won't let nobody hurt you
Wont let no one break your heart
No one will desert you
Just try to never grow up
Never grow up

I cried some more.  I cried because the first verses remind me of Luca; He's little and laughs at everything and I would do anything to protect him.  Like the song says, "I won't let nobody hurt you."  I would lay myself in front of a bus to save him.  He's innocent and wonderful and I love seeing the world through his eyes.  I was crying because I don't want him to grow up so fast - I want him to stay little longer. 

And I cried.  The last time I promised someone I wouldn't let anything happen to her she died in a car crash less than a year later - and there was nothing I could do.  This song reminded me of Tory and how I couldn't protect her and how much I loved her too.  I know it's almost been 11 years since Tory died, but it still hurts.  Will it ever stop hurting?  I cried harder.

I cried because my grandfather died in March and I miss him.  Death and funerals always remind me of the people who should still be here.  I should have had more time with my grandparents while they were younger.  I should have gotten to meet my aunt and had more time with her husband, my uncle.  I shouldn't have to say goodbye to CF friends.  They should be here fighting with me.

I cried because my best friend graduated from college.  She has been my best friend since kindergarten and she's graduating from college.  We really are adults, aren't we?  I want the summers we spent walking around downtown and going to the pool back.  I want to be putting on a puppet show out her bedroom window.  I want to be talking into a microphone about nothing and laughing about everything.  I miss her.  And not just her - I miss all my friends who have graduated and moved away.  I want them all back.  I want to be in college again - go down to the dining hall and eat dinner every night with the same group of amazing friends. 

Graduations make me a little sad because it's something I wanted so badly - to succeed in college - and I really failed.  I'm so proud of the graduates because I know the kind of work that goes into earning a degree.  But I can't help feeling a little jealous, which makes me cry. 

My brother is graduating from college.  I cried.  I finished the quilt I'm making for his graduation which made it all feel really real - he is actually graduating and moving to Colorado.  Colorado.  That's like 3 states away.  Three Big States.  And I don't know if I can handle being so far away from the person who probably understands me the best.  Because he's lived with me and traveled with me he knows all my needs.  My best friend Sarah comes close, but she doesn't have everything memorized.  I can call Dar-Dar in a complete panic and he can calm me down.  I don't know if I can even put into words how much I'm going to miss my little brother.  Who's going to do my dishes and laundry?  I cried.  I am crying now. 

There is just so much flooding my brain and I'm trying to balance all this with work and I just wish I had never grown up.  I want to give back my Adult diploma.  Make me a kid again.  Can't I un-graduate?  There are so many things I love about my life, but losing people is not one of them. 

The song ended but my tears wouldn't stop. 

Wednesday, May 11, 2011

Update on Me

I've been busy.  Too busy at times, but I love being busy.

I've been thinking a lot lately - about my blog, my book and my personal journal.  I want to write more.  The more I write the better I write.  If I write more I will eventually stumble upon and say something profound. 

A couple days ago I read a post on a different CFer's blog, and it brought me to tears.  She wrote about losing many CF friends recently - and it reminded me of the year I lost 8 in just as many months.  She wrote about losing her best friend, and I cried for her and for me.  I miss having CF friends, and at best I have CF acquaintances.   I want friends again.  I want to be able to share and talk about how we deal with this disease. 

Since I've been healthier I've avoided my CF friends, ignored my blog, and dropped out of online CF communities - communities I used to be such a big part of.  Part of me ignored it all because if I'm not involved I'm not dealing with CF every day.  And I want to be able to ignore my CF and pretend it's not there.  But I can't and I need the support from my cysters and fibros (terms I'm not sure I like... I prefer CFers). 

So here I am, wanting to blog more, wanting to post more in the CF groups on Facebook, and chat with my fellow CFers.  I'm back and I'm not hiding my CF anymore.  Like a friend of mine said yesterday, "We're all in this together!"


My goal in life is to love and be loved.   It's that simple.  Last night I got an email from Chris and I want to share it here because I felt so loved.  Here it is:

Hello everyone!

One of my best friends, Carla, has a rare and serious illness called Cystic Fibrosis. Carla loves my son Luca, and has a lot of fun taking walks, playing games, hiding from pretend bears, looking for ducks, playing catch, reading, and all sorts of things with Luca. She is so close to us that she has spent some Thanksgivings and Christmases with us. She's also Luca's honorary auntie, from before he was even born. She's really part of our family.

Here she is with Luca a couple of years ago:

The disease she deals with is debilitating and often leads to an early death. Since patients with the disease die early, pharmaceutical companies don't have much interest in trying to find a cure. As a result, most of the research is funded by donations to the Cystic Fibrosis Foundation. The Foundation even sacrifices member benefits in order to put more of its donations into research.

I'd like Carla to be there with us when Luca has his first day of school, when he learns to read on his own, when he starts to look and talk funny because of adolescence, when he has his first date, when he graduates high school and college, and when he starts his own family.

We can all help that happen by donating to the Foundation. So if you have a dollar to spare, even in this terrible economy, would you consider donating to the Cystic Fibrosis Foundation? If so, here's a link to my Great Strides page:

Great Strides is the fundraising walk for CF Foundation. If  you'd like to join me and my friends and family on May 22 at 9:00 AM, we'll be at Elver Park in Madison, WI.

I thank you from the bottom of my heart for your time!


Thank you Chris, Kyra and Luca!!!

Friday, April 8, 2011

REASON 4,511

So I've been busy since getting out of the hospital and getting rid of all my strings.  I have work, and friends and family, and all those projects I have... 

But I was thinking about the person who still isn't talking to me because of HALLOWEEN - and I thought I'd post reason 4,511 why I can't be around my trigger.  He knows that I have problems with him, and yet he says things like this:
I havn't heard anything. If you need a guy to make out with to make him jealous though Im sure you could find one, at the very least id probably be willing to help you out :P

Um, I try not to swear in my blog, but seriously, fuck this kid.  This was awhile ago - but with the awesome new facebook "see every conversation you've ever had with this person" feature, I came across this.  Fabulous.  

Friday, March 11, 2011

No Strings

I've got no strings.  It's been 5 days since I finished my home IVs, and a week and 1/2 since I got home from the hospital.  Hopefully I'll be blessed enough to go another 18 months without IVs - but if not I'm okay with that too - the care I got this time was well worth the drive. 

I'm going to say again how much I LOVE my new hospital - it's so fantastic.  I'm so glad I made the choice to go farther away to get better care. 

In other news, I now weigh 176 - yes, that middle digit is a SEVEN, not an EIGHT or a NINE... when I was in the hospital that middle number became a 9 and it was pretty tragic... but I've lost all that weight since I've been home.  Ten more pounds and I'll be done losing weight and I'll begin the journey of learning how to maintain my weight.

I've been keeping busy - knitting, quilting, scrapbooking.  I have so many craft projects going it's ridiculous.  But one scrapbook is done and one quilt almost done... two more quilts and a million things to knit! 

I have to go, there are crafts waiting for me!

Sunday, February 20, 2011

Hospital: Day One Million

It feels like I have been here forever.  I've only been here since late on Wednesday.  The getting better is going more slowly than usual - and I'm not happy about it.  I am, however, happy with the care I'm getting.  This hospital is awesome.  AWESOME.  Here is a list of reasons I'm doing awesome here:

*My attending is WONDERFUL.  I see my pulmonologist EVERY day - even this weekend b/c she's the pulmonologist on call.  She's so cool.  And stubborn.  She's very stubborn - possibly more stubborn than me.  And she knows how stubborn her CFers are and she doesn't let us pull any crap - not that I pull much anyways, but I pull a little. She insists on writing all the orders for her CF patients even if it's the middle of the night.  I love her.

*The nurses ROCK.  Now, I don't want to say that there aren't any good nurses at the U, but it's hard to find a good one - and I don't get their schedule.  And my favorite nurses usually end up leaving the pulmonary/GI floor to work elsewhere.  Here I have the same nurses for SEVEN days in a row.  It's amazing.  I've had all good nurses, good NAs (here they call them Personal Care Technicians or PCTs.  Don't ask me why), and even good nursing students.  Some things that make these nurses better are they speak English, they know how to dispense meds properly, and they can handle pouring my pills AND giving me my IVs ON TIME (who would have thought that would ever happen!).  So far I haven't had to yell at a nurse or a doctor.  I feel confident that these nurses know their sterile technique and know what they are doing.  I haven't had to ban anyone from my room - including medical students.

*The nurses round EVERY HOUR - which means you see someone at least every hour.  At the U I could go several hours without anyone stepping into my room, so the rounding every hour was weird at first.  I was kind of like, "I'm fine, leave me alone!"  But now I'm glad that they do it - I at least get to see a human once an hour.

*Every day I get $4 to spend in the cafeteria - it gets me up and walking around and eating more.  I don't need to eat more - I need to eat LESS (I've gained all the weight I lost at home back in the few days I've been here).

*The food is better and I haven't gotten food poisoning. 

Things that are different and possibly bad about being here:

*It's far away from my house - and from my parents' house, which means my parents aren't here every day.  I get fewer visitors.  Today I haven't had a single visitor :-(

So those are my two lists.  I can handle being a little isolated because the care I'm getting is so great.  I am so much more relaxed and not anxious.  I'm not waiting for the next med error to happen.  When I call for a reason I have a nurse or PCT in my room in less than 5 minutes.  ALWAYS.  it's awesome. 

I'm enjoying my time alone - at least for now.  I've been knitting, watching movies and TV, sleeping, and riding my IV pole around the hospital.  Yes, I have taken up the art of Pole Riding, inspired by the documentary of Eva's - that scene with her riding her IV pole.  I enjoy the funny looks and laughs I get from people as I ride my IV pole like a scooter around the halls.  One person told me today "That's totally how I would get around, too."  And I smiled. 

My room has "the phantom door" - it opens by itself.  So mostly I keep the door open - but today I didn't feel like having people around, I tried to keep it shut, but it has now opened on its own.  Maybe that's a sign I should stop typing and go back to knitting or reading. 

Please leave comments; I like knowing people haven't forgotten about me!


Saturday, February 19, 2011

Rinse, Repeat, IVs

I'm back in the hospital.  It has been 18 months since my last round of IV antibiotics and almost TWO YEARS since I've had to stay in the hospital, and here I am.

I think this is day 4 in the hospital.  Technically my 3rd full day here - I came in late on Wednesday to the ER and didn't get a room until about 9pm.

I am not at my usual hospital, I'm at the hospital about an hour from where I live.  It's different here - but different good, not different bad.  The nurses are good.  The staff is friendly.  The food is delicious - maybe too delicious because I want to lose weight, not gain it. 

The only drawbacks to being far away from home:  Not having as many visitors, and missing all the crazy that's happening at the Capital in Madison.  

Sunday, January 23, 2011

Dancing with 65 Roses

I have cystic fibrosis.  I have other health problems, too, but CF is the biggie.  It's the one my parents stay awake at night worrying about.  No one worries because I have fibromyalgia or because I have endometriosis.  I know my parents are concerned and sympathetic if I am having symptoms, but it doesn't keep them awake at night.  My CF (sometimes called 65 Roses by children) is currently fairly well controlled thanks to the Mannitol - my miracle.  My parents and I are sleeping better at night; they aren't up worrying and I'm sleeping soundly with my O2 taped to my face - my second miracle. 

I couldn't be happier with the way the Mannitol and now the oxygen at night have helped me.  They have allowed me to pursue a dream - something I thought I might never do because of my cystic fibrosis.  I am dancing with 65 Roses. 

This story goes all the way back to September, when I lost my babysitting job.  It wasn't my fault - the child I was caring for needed more stimulation than I could give him.   I know putting him in day care was a great decision because I was struggling to take care of him - and I wasn't even full-time.  I was limping along, but feeling guilty that I wasn't giving him the attention he deserved. 

In September - and for years before - I was tired all the time.  And I mean ALL the time.  Most days, I would take one or two naps, each lasting at least 4 hours.  And I would try to sleep 10-12 hours at night, so I was only awake about 8 hours a day.  Until we finally got slapped by Captain Obvious and realized I needed O2 when I sleep.  And I've been awake ever since. 

Before the oxygen, I could go two or three days at top speed, and then I would sleep for one full day.  That's how I traveled; it's how I lived.  Now, I can go almost two weeks before I need to stop and rest for a full day.  And if I take partial days to rest I can go longer.  The only way for me to describe how it feels is by saying it's a miracle. 

And now, I'm dancing with 65 Roses. 

I love ballroom dancing. I have for almost 10 years now.  When I was my sickest, a family friend suggested that I become a dance teacher, and that idea has stayed with me, although I figured it would never become reality because I didn't have the energy. 

Babysitting on a regular basis for a year BEFORE I had the oxygen at night boosted my confidence in my ability to do things - to be able to lead a more normal life instead of waiting around to be sick.  The Mannitol allowed me this freedom.  I don't worry when I will spend the next two weeks in the hospital.  I feel much more like a regular person. 

So when I lost the babysitting position, I was worried I was going to be bored stuck at home.  I would have made about 10 million quilts by now... so it's a good thing I stumbled upon the perfect opportunity for me.

I got an email from the dance studio where I had taken a class over the summer.  This email came about two weeks after I lost my babysitting job and when I was starting the oxygen at night.  The email said the studio was looking for more ballroom instructors - so I replied and ended up a ballroom dance teacher.  It happened really fast, and the details are complicated, but basically I am a student teacher at the studio.  I am learning to teach what I love - ballroom dancing.  The studio was also looking for someone who could possibly teach classes for children, and I fit perfectly into that role with all my experience and my love for kiddos. 

I started my 'job' (it's complicated... but I'm working part-time and have worked a lot with my rep from Social Security to figure it out... and this is the first year I have to file taxes, which is a whole 'nother story).  I fell in love with my job - I love helping at the studio with secretarial work.  I love decorating the studio and helping with parties.  I love training with the owners of the studio.  I love teaching my classes.  I love everything about my job and I'm am completely happy. 

Since October I have thought a lot about this post and how I would announce formally that I am a ballroom dance teacher.  I've thought of what I had to go through to get here - and how I would do it all again to get to this spot. I'm in love with what I'm doing and I'm slowly figuring out how to balance my time between fun, work at the studio, and the boring things like dishes and laundry.  I honestly never dreamed that I would get here.  I thought my lungs would never be okay enough to do this stuff.  And that's what they are - they aren't great, but they are so much better than they used to be.  I try not to take a single breath for granted because I know what needing IV antibiotics feels like.  I know how hard it is to walk when you're sick from your CF.  Every dance step I take is for all the people I know and all those I don't know who have CF.  I'm living my life the best way I know how because I can. 

That is how I ended up Dancing with 65 Roses. 

Tuesday, January 18, 2011

The Best

I think I have determined my problem, but for the life of me I cannot come up with a solution. 

I want to be the best.  At everything. 

My problem is I am too good at too many things - and yes, that is a very arrogant statement.  But if I do something I am going to be good at it; that is the way my life has gone - it's who I am. 

In high school, if I were a member of something, I had to be the best and/or the leader.  Foresics team captain, band section leader, president of the Spanish club, etc.  If I did it, I wanted awesomeness from myself.  Not to mention I had to be awesome academically. 

And I tried the same pattern in college, but I got too sick to continue that.  So I lapsed into being the best at the things I could still do - the best knitter/quilter/crafter, the best sleeper, and the best patient in the hospital.  That last one is sort of a joke.  I knew how to get what I needed, but the staff would certainly not agree that I was a "good" patient.  I think it says something like "difficult" in my chart, which basically means, "pain in the ass because she won't give up until she gets what she wants."

Now that my health is better, I still want to continue my crafts - and be amazing at them.  I want to continue to write in my journal at a champion rate, and blog creatively, openly, and in a way that shows some sort of talent.  I want to keep reading books that inspire me or get me thinking. 

I have more to add now that I'm doing better.  I think this might be the first time I have mentioned this in my blog, but I have a part-time job as a ballroom dance instructor.  And I want to be the best ballroom dance instructor I can be.  I've been making flashcards and studying the dancing and striving to learn as fast as possible so I can be THE BEST right now.  I don't want to wait; I want to be good now. 

So I put all those together and I'm swamped.  But I still have a couple more things - the most important things - that I want to be THE BEST at.  I want to be The Best friend I can be, The Best daughter/sister/granddaughter/cousin/auntie I can be, and The Best friend I can be.  I think right now I'm having the hardest time fitting in this last part.  I don't know how to fit in all my favorite people around my favorite hobby/job: dancing. 

My new job seems to be taking and eating all my free time - well, the time when other people are free, mainly evenings.  I'm free in the morning because I rarely work before 11 and I'm free in the afternoons, sometimes. 

I want a way to better balance my time so that I can be The Best at all I do (even if it means being THE WORST at laundry and dishes and housework because those things are less important to me.  I'd rather be The Best at everything else and have my house a mess!)

Monday, January 10, 2011


I am going to admit my weight publicly on my blog.  I weigh 180, and I'm so proud because about a month ago I weighed almost 190.  When I went to clinic in November I was really heavy.  I'm still heavy - but I'm losing weight and I'm so proud of me. 

And I wanted you all to know that I'm finally proud of me and my weight. 

Want to know my secret to losing weight?  No carbs.  Okay, okay,  not NO carbs, but a very restricted carb diet.  I don't buy bread or tortillas anymore.  I have a carb addiction - and I could eat 6 pieces of toast in a sitting.  So if I only buy low to no carb foods, I eat better and lose weight.  I'm also eating less - and it's working.  Imagine that! 

I don't deprive myself of meals or ignore my diabetes (the low to no carb diet is probably best for my diabetes, anyways).  I don't deprive myself of carbs altogether either.  About once a week I let myself eat out and get a sandwich or soup in a bread bowl, and sometimes even Noodles.  But for the most part, I eat little meals that are low to no carbs.  And I'm really proud that 1) I'm sticking to something and 2) It's working!!!

I finally feel that if I lose weight, FABULOUS, but if I don't, that's okay too - because I'm me.  I may not really like the way I look in photos or in the mirror when I teach, but the more weight I lose the more I feel comfortable with myself and tell myself I don't need to lose weight.

Daily Updates

I'm doing well. 

I want to write about my job, my weight, my feelings on life and death, and other assorted things, but who has the time???

I just wanted to quickly post a couple things:

Kyra, from has a wonderful blog about Gravestones and related topics - and I find her writing beautiful.  This entry especially:

I think I want to work on my book again... and I think I should make Chris and Kyra the editors.  Because they are both wonderful writers and know me so well.

But first, I'm going to finish my brother's quilt in my 'spare' time.  See the craft blog for that post! 


Wednesday, January 5, 2011

Oxygen Face

So I think I have a permanent case of Oxygen Face.  Oxygen Face is what I call the indents from the nasal cannula on your cheeks. 

This is going to be a very short post - because, I'm wondering, does anyone else get Oxygen Face?

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