Wednesday, December 31, 2014

10 Years

I've been wanting to write this post since November, but about that time I put up an item on my etsy store and got overwhelmed with orders.  I've finally found a moment to sit down and write this (despite having about 3 quilts I still need to make), so here it is.

November 17th marked 10 years.  Ten years since I almost died.  Not "almost got hit by a bus" almost died, but "lost half my blood volume and needed emergency surgery" almost died.  I was in my first semester of college and one day on my way to my Intro to Engineering class I had a sharp pain that caused me to double over.  I called my mom and let her know that I had the pain, but I was still going to class.  I went to class, and then I went my chemistry lab.  I informed my TA that I probably had an appendicitis, so if I doubled over in pain or collapsed, they should call an ambulance.  But I really wanted to be there and to complete my lab.  After chem lab I walked back to my dorm basically doubled over in pain the whole way.  I decided to go to the ER.   I took my backpack full of books (because I had a calculus midterm the next day and I needed to study, duh), and hopped on the bus to the ER.  I TOOK THE BUS TO THE ER.  Looking back, I was way too stubborn and dedicated to my studies.

I waited in the ER for a long time, and studied for my midterm while doubled over in pain.  I called my mom and asked her to drive the two hours to where I was going to college.  She arrived as I was being taken to CT. I was so relieved.

This is getting long, so I'm going to make a REALLY long story shorter and focus on the important parts.

A mess of things happened in the ER.  They said I was full of poop and that was causing my pain.  I disagreed.  I pooped all the poop out and the pain wasn't any better.  Mom and I were sent home from the ER around 4 am, We ate from the vending machines.  Cheetos.  Mom slept on the floor of my dorm room.  Once they were open, we went to my CF clinic to get some actual help.  They called a surgical consult and then I was on my way to have my appendix out.

I woke up from surgery and made sure I could still do a triple integral, and then went back to sleep. Because midterms were still incredibly important at this point.  In the morning, a med student woke me. He jabbed my surgical site; I backhanded him. I was given a med I didn't want to take.  My mom fed me some Jell-O, and I fainted.  I wanted more Jell-O but it got spilled when I fainted.  I had no blood pressure. My mom DEMANDED that surgery come see me.  They didn't come for hours. Finally she demanded I be seen by pulmonary, and they demanded that surgery do something,  I was almost dead.  My pupils fixed and dilated. I was in and out of it. I felt a darkness pulling at me and I fought it off. I fought hard. I thought, "My parents, my doctors and I haven't fought my CF this hard for 18 years for me to die from an appendectomy." The darkness faded. I gave my mom a "thumbs up" with all the strength I had, and she began to cry. I was trying to tell her I knew I would be okay. I had a CT that showed a ton of blood in my abdomen. I wanted my mommy to sign the surgical consent form for me, but I had to do it.  I was barely able to lift my arm, but I made an 'x'-like thing on the paper.  I had emergency surgery.

I woke up.  I couldn't remember how to do a triple integral. It didn't matter. A nurse was wiping vomit off my face because I had thrown up in the OR.  I had a garden hose in my nose.  I was panicked.  I thought they had punctured a lung. They hadn't, but my lungs were full and weak. I had three blood transfusions. The rest is a blur.

It was a long time, but when I could finally lift my head and whisper, I said to my mom, "Call. Sarah." My mom had already saved my life, but somehow I knew I would need the support of my childhood best friend.

I didn't fully recover for 8 months.  I tried to go back to college and my classes about a week after my surgeries.  I'm going to blame that decision on complete determination to not let anything medical derail my college dream and the brain damage I had from lack of blood.

I did have brain damage.  I was lucky I was young so I recovered.  I had problems following conversations, and figuring out puns.  Fast TV shows confused me and wore me out.  I once told my mom, "I feel like I'm a Monet painting.  From far away I look pretty and put together, but once you get up close I'm fuzzy and messed up."

My mom literally saved my life during this ordeal, and she nursed me back to health in the following months.  I was so sick for a while my parents couldn't leave me alone.  They had to go to a closing a couple hours away, and if I remember correctly, they had my brother stay home from school to babysit me.  He might have had a day off, but I know Darin babysat me - his older sister.

Socially, recovery was hard. My college friends were amazing.  I had only met them months before, but they were so supportive and wonderful.  One friend took me to the doctor, they all came to check on me in my dorm room, and they would go to the grocery store with me so I could get the milk I needed to keep my weight up.  When I was at school I did better, but I was honestly too sick to be away from home, so I went home.

Home was a disaster.  What few friends I had in my hometown were away at school, and one friend in particular was awful to me.  I thought she was my best friend, and the first time she came to visit after my surgery she brought her new best friend to meet me.  I was so weak I couldn't follow their conversation and when they left I just cried. We had an ugly parting of ways, and I didn't know if I was going to be well enough to go back and be with my new amazing friends at college.

The only person in my hometown who came to visit me more than once after I got home was Sarah.  Whenever she was home over that holiday season she would come visit.  She was wonderful.  If I just wanted to rest she would just sit with me.  She took me to visit my favorite teachers - even our favorite elementary school teachers.  She invited me to go sledding, and when I was too weak to walk back up the hill she told me to sit on the sled and she pulled me up the hill and suggested we just go home and watch a movie.  She was, and is, the best.

My mom saved my life physically, but I was really depressed after my surgery - I had brain damage and was so weak and frustrated.  I lost the person I thought was my best friend, but my TRUE best friend showed her colors and pulled me out of my funk.  She gave me a reason to keep fighting every day.  I had to fight very hard, but she helped me see it was completely worth it and I was loved.

Right about this time ten years ago Sarah took me sledding.  She pulled me up the hill and helped pull through the toughest time in my life.  I am forever grateful for her.

I could never thank my family and Sarah enough for getting me through that ordeal.  I owe them my life and all the happiness and joy I have experienced since.  I love them all infinitely.  I am infinitely grateful.  As awful as everything that happened was, it brought me and Sarah back together and gave me perspective on how short and wonderful life is - and I gained that wisdom much earlier than I probably would otherwise.  And I am grateful.

I can't believe it's been 10 years.

Friday, August 29, 2014

My Life Story, Abridged

I'm really tired of this dance I have to do with my CF clinic.  I don't know what else to say, other than that.  My parents and I have always had to dance with the CF clinics in one way or another.  My best CF clinic was the pediatric clinic at UW Madison, but eventually we had to dance with them too.

I'm just so fed up and annoyed because being sick is hard, and then dealing with doctors and clinics is hard.  I would rather just do things on my own and not deal with doctors at times, because they and their staff make my life more difficult.

This is the story of my two week dance (thus-far) with my current clinic:

Last Tuesday I called CF clinic because they had never scheduled my follow-up appointment from my hospital stay and it has been a month.  I requested to do PFTs locally and go from there.  I got a call on Wed. saying my doc is out of town, but the NP would like to see me in clinic. I don't really like her because she's been rude to me about a couple issues, and I would prefer to wait to see my doctor. They gave me orders to do PFTs locally, so I was mildly content.

Friday I do my PFTs locally and am not happy with the results... I don't hear anything from clinic.

Called CF Clinic Monday because I felt horrible - knew it was allergies, wanted an Rx for Prednisone and my doc's opinion.

Missed a call Tuesday from my NP, but she said she'd call me back.  She didn't.  I left a msg with the RN - but she NEVER EVER calls me back.

Wednesday, nothing. I started leftover Prednisone and within a couple hours was feeling better.

Thursday, nothing.  Felt much better, and still have no idea what my doc thinks.  Don't really care now.

Friday (today) - it's going to be a 3 day weekend and I still haven't heard from clinic.  I also am going to Europe in about 20 days, and I'd like their opinion on some stuff - like, what the plan should be. I call and leave a passive aggressive message for the RN because she's the bane of my existence.
It may have included "Well, I know you're probably not going to call me back, but it would be AWESOME if you could this time."

Doin' what I have to do, whether I have support from my docs or not, since 1986.  What can I say? I'm still here!

Wednesday, August 13, 2014

Depression Dave

On Monday, a man I have always loved committed suicide.  While I never met him in person, Robin Williams seemed like a friend.  I saw him (as characters on TV and in movies) more often than I would see some friends and relatives.  He made me laugh - a lot.  I remember one depressive episode where Mrs. Doubtfire was the only movie that could make me smile.  I included lyrics from "Friend Like Me" in my vows when Dan and I renewed them in June.  Robin Williams was always around and could always cheer me up.  

And now he's gone.  He took his own life, and that reminds me that on occasion, I think about taking my life.

Someone else's horrible depression can trigger thoughts of my own depression.  Who thought that would be fair?  One cancer patient talking to another cancer patient doesn't make either cancer worse.  In fact, it's probably almost always cathartic.  Now, talking about my depression to people who really understand depression can be very cathartic, but it can also be horrible and, well, depressing.  

I am depressed.  

I don't know what to do about it.  

I feel like I'm drowning.

The last couple months have been a roller coaster for my husband and I.  My health has been up and down, and then down and down and down and maybe it's almost coming up again?  We've been busy.  We've moved, are trying to sell a condo and construction on our new house begins soon.   I've been completely crazy at times. The prednisone is mostly to blame for that, and I made some mistakes because of the highs and lows that come with taking prednisone.  I made some mistakes that caused a "parting of ways" with some friends, and parting ways with those people completely devastated me.  My eye is twitching thinking about it and I can't talk about it.  

I am depressed.  I keep thinking it's mainly related to current stress and recent events and that I'll pull through it soon.  So I keep waiting.  I'm also waiting because I don't know what to do if it doesn't go away.  I don't just have depression.  I have anxiety that is completely like quicksand - it sucks me in and keeps pulling and I can't get out.  The more I try to escape the worse it gets.  I can't escape it.  I am anxious about almost everything.  Right now I am anxious because I'm thinking about depression and anxiety.  I am anxious because my depression is bad and I might need more medication, but I'm already on a really high dose of anti-depressant, and I think my brain is too broken to fix.  

I am anxious because my brain is telling me that I will always be depressed and my life will just suck.  Even the best times will suck a little because depression will always be there.  I might as well give my depression a name - like, Dave - and just accept the fact that Dave lives in my brain and always will.  Maybe I'll try to make friends with Dave and Dave will become more of an acquaintance that you pass in the hall and say "Hi" to and then ignore the rest of the time, instead of being that constant nosy upstairs neighbor who is always judging you and making a ton of noise in the middle of the night and ruining everything including your sleep pattern. 

I wish I could move.  I wish I could move away and no longer have Dave living upstairs.  He follows me everywhere, telling me how horrible I am and how I screw everything up. He lies to me - tells me things I know aren't true and convinces me they might be true.  He makes me second guess myself and the people around me who tell me they love me and that things will get better.   Dave is the worst.  I HATE YOU DAVE! GO AWAY!

Depression sucks and I'm mad as hell about it.  I want to fight it - not just my depression, but help everyone else who is suffering fight, too.  And then Depression Dave tells me that I won't succeed and I should just go back to bed... so maybe I'll sew, or play a video game to distract myself for now.  Because at least when I'm doing those things I'm not thinking about my depression.  I'm at least just numb instead of incredibly sad. 

And that's how I feel about my depression today.   

Wednesday, July 16, 2014

Wherein I combine all the blogs!

I have a separate craft blog and a separate blog for travel photos, but really, I want just one blog.  So the plan is to revamp this one a little, and add in travel photos, photos of craft stuff I've made, and photos in general.

Here is the first photo:

It's a simple pair of mittens I knit and then lined with fleece. 

Happy crafting!

"How to be a Patient"

I'm going to start teaching classes on how to be a patient in the hospital.  From my most recent stays here, it is apparent these classes are very, very necessary.  Now I could go the traditional route and teach patient advocacy, and things like, "How to fill out a healthcare power of attorney," but I've got some other ideas I want to teach.  I want to teach how to make a hospital stay a pleasant experience for everyone involved.  I think it might help the staff too - and who doesn't want to help the awesome staff that makes me healthy again?

My first class would be "Patient Basics."  Otherwise known as, "Don't be a pain in the ass."

First rule:  Keep your voice at a level that won't carry to other rooms unless it's a life or death situation.

Other Important Rules:
~The "silence" button on your IV pump is your friend.  Please, call your nurse when your pump beeps and then silence it.  There is no need for you to scream and shout down the hall that your thing is beeping.

~I know being here sucks, I know you're in a ton of pain, you've told your nurse who is currently with you, that you're in a ton of pain.  Stop shouting about your pain.


~Food does not magically appear.  You have to order it and then wait.  Don't yell at your nurse because your food didn't arrive 5 minutes after you ordered it.

~People are nice if you are nice to them, in general.  Smile and talk to the staff - they are humans, too.  It'll make your stay much better.

~Say "Please" and "Thank You" to the staff.  You can't go wrong with being polite.

~Learn the difference between your nurse and your nursing aid.  Know the difference between what each can and can't do.  It'll be really helpful.

I'm going to offer other classes like "Knowing the difference between your doctors" - a class that completely focuses on the differences between medical students, interns, residents, fellows and attendings.  I will teach ways to help them learn how to be good doctors and how to take care of you at the same time.  I can also educate basics about the different specialties and when to ask for a consult or a 2nd opinion.

I think I could also offer a "Fun ways to occupy your time in the hospital" class, full of activities for every level of sickness. Even f you can't even sit up, or if you can just sit in bed, or if you can walk around the hospital, I've got fun activities for you!  IV pole riding, Code Blue Bingo, Sharps Basketball, Making art out of medical waste left in your bed - all WONDERFUL activities.

I could even teach patients how to make edible - possibly even enjoyable - meals out of the stuff that comes up on your tray!

Think I could make a career out of this?

Saturday, July 5, 2014

4th of Lucky

I thought I was having the WORST Fourth of July weekend EVER.  Like, THE. WORST.  I'm in the hospital on my favorite holiday and my husband can't be here because he's getting over a virus.  My Dad can't visit because he's on call.  No visitors.  No fireworks.  No sparklers.  No barbecues.  No picnics. No parades. No delicious brats or hot dogs.  Not even a decent burger anywhere. No fun at all.  Just a whole weekend of me, Netflix and my quilting.

My husband and my mother-in-law are packing our house for a move, and I want to be there to be involved, which has caused some friction, which has stressed us all out.  So not only is my weekend no fun at all, but it's also stressful.

And lonely - did I mention the gut-wrenching loneliness?  Despite the medical students, residents, doctors, nurses, respiratory staff, and various other staff, it's really isolating and lonely in the hospital. I often feel forgotten, too.  Sometimes, I just want to be surrounded by the people who understand me best.  It can be really overwhelming telling your life story to new person after new person.

So my weekend was already awful, stressful and full of loneliness. Then I'm doped up on Benadryl which makes me sleepy.  I was cranky, grumpy and thirteen other unfriendly dwarfs.  My doctor had told me to go to the 9th floor around 9:30 on the 4th so I could see the fireworks.  I had been arguing with my husband and feeling sorry for myself so I decided I was in no mood to do anything fun.  I had decided there was no way anything - not even fireworks - could make my weekend better.

At about 9:20 last night I changed my mind.  I decided that it was up to me to try and make the best of my terrible, horrible, no good, very bad hospital stay.  I put on my shoes, got unhooked from my IV, and wandered towards the 9th floor.  I had no clue how to get there, but a very nice resident and medical student let me ride the staff elevator up with them.

I arrived at a little sitting area with giant windows facing south.  To my amazement, we could see more than one fireworks show going off.  In all, we could see EIGHT fireworks displays.  EIGHT.  I knelt on the floor and rested my head on my folded arms on the windowsill.  I could see the fireworks and my reflection in the glass.  My glasses, my French-braided pigtails, my new pajamas and a little bit of fog on the glass from my hot breath.  All good things.  I had washed my glasses - something I don't always have energy to do when I'm in the hospital.  Also, I had the energy to wash up and braid my hair after my best friend came (a visitor!) and brought me new pjs to wear.  And I had enough breath to fog up the window.  I had enough breath to get me from my hospital room to the 9th floor lounge without a wheelchair.  And now I had eight fireworks displays at once.  

In the glass I saw a tear stream down my cheek.  I suddenly felt very foolish.  I have so much to be thankful for, and I was wasting time choosing to be grumpy.  I was choosing to not appreciate what I have and instead focusing only on the things I couldn't have.

My heart filled with a sense of love and hope.  I sat there and watched the fireworks until all the displays were done.  After the last embers fell, I said a silent prayer of thanks and returned to my room.  I called my Dan to tell him about my wonderful experience and to apologize.  I wanted to thank him and his mom for doing all the work I don't have the energy or health to do.  And I just wanted to hear his voice.  Dan tucked me in from afar, meaning he stayed on the phone with me while I got comfy and until I was almost asleep.  And while that's not as good as being in our bed together, it's good enough.  It's the best I've got available and I am grateful for it.

I'm extremely grateful for my best friend Sarah and her husband for going to Kohl's yesterday to get me more pjs and things Dan was planning on bringing me this weekend, but couldn't.  It was so wonderful to change into clean pjs.  It was wonderful to spend some time chatting with people who know me well and who were also in the same room as me.

I'm thankful for the strangers who have helped me in the cafeteria when I have been trying to juggle my IV pole, my wristlet, my phone, and a tray of food.  Their kindness means so much.  It restores my faith in humanity a little.

I'm thankful I'm getting better.  My lung functions were up on Thursday and hopefully they'll be even better on Monday when I test again.  I'm thankful for the energy to quilt while I'm here and the attention span to watch Netflix.  Sometimes I'm so sick all I can do is lay there.

I'm thankful and lucky.

Wednesday, June 25, 2014

Three Years Ago Today

Three years ago today, at right about noon I pulled my car into the parking lot at the Great Dane.  Standing on the corner outside the restaurant was a boyish looking man wearing an over-sized, gray, short-sleeved, dress shirt.  He also wore a nervous expression that told me he was probably my date.  I then confirmed what I was thinking because I recognized him from his online profile.  I recognized him first by his shirt - the same, over-sized, gray, short-sleeved dress shirt he was wearing was also the one he wore in his profile picture.  It did make me wonder whether or not he owned any other apparel that was appropriate for going out in public.  As I parked my car, I grabbed my purse and the box containing my copy of Scrabble, and I again looked at my date.  He seemed really nice and pretty confident over email, but I could tell from 100 yards away that he was so nervous he thought he might die.  That was when I decided to smile.  I smiled all the way from my car to where he stood, and it was a good decision because he would later tell me my smile was what he noticed first about me.  

He recognized me because I was awkwardly carrying a copy of Scrabble.  We had decided over email that we would play Scrabble at the Great Dane for our first date.  A silly, nerdy thing to do seemed appropriate.  Bored games and nerdy things were the reason I looked at his profile in the first place.  I walked toward him still, and when I approached he stuck out his hand to shake mine, and I laughed at him and said, “Oh, come on! Give me a hug!” 

I remember almost every detail of that first date – what he wore, what I wore.  We ate Idaho nachos (which are sadly no longer on the menu at the Dane), and I had the tomato mushroom soup and he had a cup of peanut stew.  While we ate we talked.  I first told him about my health, which for me was the first test for any guy.  It was my “hold onto your hats” move.  As I pricked my finger to test my blood sugar and then gave myself a shot of insulin, my date told me about his cousin and her son and their mysterious health problems.  I remember him saying, “I think you’d really like her.  She’s great!”

We played Scrabble and he crushed me.  I was pretty sure this was going to happen because I’ve never been particularly good at Scrabble.  During the game we talked more.  He told me about the condo he just bought (bonus points for being a grown-up, a few minor points deducted for making it a tricked out bachelor pad), and the work he does “at this little medical software company.”  I, laughed and listed my friends who also worked at Epic, and not shockingly we both knew one person. 

My date and I talked about our families – my brother, his sister, and our parents.  He impressed me by telling me how much he admires and looks up to his little sister and how they talk once a week – usually on Sunday.  I remember thinking how thrilled I’d be if my brother called me once a week. 

We finished lunch at the Dane, and I offered to split the bill with him and he refused to let me pay.  After lunch and Scrabble we were crossing the street and I thought, “5’ 7” isn’t such a bad height.  I think it’s completely fine that we’re exactly the same height.”  I suggested we go for cupcakes, and even though he said he was too full, my date said he didn’t mind if I got a cupcake.  I remember feeling really happy and a little bit silly.  I remember being able to be completely myself. 

We walked past the movie theater and my date saw “Cars 2” was playing.  He asked me if I’d like to join him because he’d been dying to see it.  I said sure, but when we went in we realized we had missed the 2pm showing by 10 minutes.  I remember the sad expression of disappointment on his face and the way it innocently changed to hope as he cautiously asked me, “would you want to hang out until the 4:30 showing?” I said, “Sure why not.”   I had to check and make sure it would be okay with my Dad, since he was in town and not expecting my date to take all day –especially since it was a first date.  My Dad had no problem with me staying out longer, so now the only issue was what do we do for 2 hours?

I got a broad smile on my face and said, “Let’s go to the toy store!” He looked a little puzzled, but had nothing better to do so he followed.  We looked at the toy dinosaurs and commented how our respective nephews would love them.  I’m pretty sure I took two and proceeded to make them duke it out.  T Rex probably won.  We wandered through Playmobile isles and over to the board games.  We talked about which board games we each owned, and oddly we owned several of the same games.  Blokus and Carcassone, plus a couple others. 

We tired of loitering at the toy store, we wandered through the mall and the grocery store, and finally we settled at a table outside the grocery store for the remainder of the time before the movie.  The more time I spent with him, the more I liked him.  We were able to talk about anything and everything and I really enjoyed talking to him.  All the nerves I had seen as he stood on the corner a few hours earlier had vanished and I sat chatting with someone I felt I had known for a very long time.  

We saw the movie and I don’t remember most of it because I spent most of the movie trying to get my date to hold my hand.  At the really funny parts I would look over at him to share a laugh, but he was glued to the screen, which made me laugh harder.  When the movie ended he said he would walk me to my car.  We walked the block almost completely without talking.  I could tell once again my date was extremely nervous.  He fidgeted with his hands as we exchanged the required “I had a really good time,” and “we should do this again.”  I had been on a lot of first dates, but this was one of the very few times that I actually meant that I had a great time and I really wanted to see him again. 

We exchanged what I thought was the world’s most awkward hug, and as I got into my car I said, “Bye, Dan! I’ll talk to you soon!”  I had a really good, happy feeling.  I know now that feeling was the beginning of the best three years of my life. 

I have loved every day since I met Dan.  I love how our relationship started slow and awkward and after a month we became inseparable.  I love that we knew very early on that we were meant to be together.  I love all the good times we’ve had, and even the bad ones.  I love the support and love Dan gives me and how he takes care of me when I’m sick.  I love that we never stop laughing.  I love our love and I love you, Dan. 

Happy three years since our first date!  <3 Carla

Sunday, March 23, 2014

Reason I Write

Tonight I remembered the reason I write this blog.  

I got an email from the granddaughter of a former coworker of my father.  She told me that I am amazing and strong.  She said she'd like to talk to someone who also has health problems and knows what it's like.  

That's why I write here: to help people who are going through hard things.  And I need to get back into writing despite the 10,000 wedding projects I'm currently working on. 

Saturday, March 8, 2014

Forever Dancing

Yesterday I was on my way home from clinic in Milwaukee.  I was feeling sad about my lung functions and something that happened to me on Thursday.  Thursday I went to get my blood drawn, and at the lab there was a woman who looked so much like my friend Lauren it was scary.  Except for the fact that she was pregnant (and Lauren and I used to compare our distended abdomens to see who looked more pregnant), I could have sworn it was Lauren.  I almost said something to the woman, except Lauren passed away in 2011 and "Hey! You look exactly like my friend, but she's dead." is not the most tactful thing to say in public.
I was sure that seeing Lauren in that woman was a sign - a sign my lung functions would be up and I would be back where I want to be.  But that didn't happen, and I was sad.  I was sad for myself and sad because I miss Lauren.  I was frustrated that she hadn't come through for me and given me the boost I thought I needed.

And then my iPod did something strange.  Out of 2,000+ songs on my phone, just as I was thinking about Lauren, "MmmmBop" started to play.  Hanson was her favorite band and I will always think of her when "MmmmBop" plays.  I knew it meant she is still with me, and that maybe the lung functions not being where I want them to be is a push to work even harder.  I thought I was doing as much as possible, but maybe I'm not.  Maybe I can push myself a little more and get my lungs back where they should be.

After "MmmmBop" my iPod played "Dance in the Graveyards" by Delta Rae.  It's a song and band my friend Kyra turned me on to, and I've heard it many times, but yesterday it just clicked.  As I drove I put it on repeat and sang aloud and cried and eventually was washed over with a sense of peace and calm.  I know I can win this.  I know I can fight.  I have to fight for all my angels no longer with us and all my angels on this Earth.

The following are the lyrics to "Dance in the Graveyards"

"Dance in the Graveyards"

When I die
I don’t want to rest in peace
I want to dance in joy
I want to dance in the graveyards, the graveyards
And while I’m alive
I don’t want to be alone
Mourning the ones who came before
I want to dance with them some more
Let’s dance in the graveyards

Oh my love, don’t cry when I’m gone
I will lift you up, the air in your lungs
And when you reach for me, we’ll dance in the darkness

And this song has made me want to throw a party.  I want to dance and invite all my angels to come along.  I can't wait until it gets warmer and I can do just that.

Friday, March 7, 2014


I'm sitting waiting to see my doctor.  I'm typing on my phone while I text back and forth with my husband.  

I'm angry. I really wanted my FEV1 to be 56% today. It was 51%. I really want my FEV1 to get back up to the mid 60s, but at this point, I don't know if that is possible. 

I'm working so hard to take care of myself I barely have time for anything else, and I still haven't improved, only maintained.  

I'm angry I ever participated in the Vertex trial (and I'm still working on the big Vertex trial post... It's hard to write about). I'm angry that I'm not the only one this happened to. I'm angry I gave up something that was working to keep me healthy to try something else, and that something else made me worse.  I feel really dumb for not sticking with what was working.  

I'm angry that taking care of myself is taking so much time.  I miss my friends. But I'm so focused on getting better I don't have much energy left after all my treatments, IVs, and exercise. 

I need to take my anger and frustration and channel it back into doing everything I can for my lungs.  I'm determined to get better.  I won't accept these numbers. I'm going to keep fighting. I won't ever give up. 

Saturday, March 1, 2014

Blogging while Biking

I want to return to blogging regularly.  I was reading things I wrote when I first started this blog, and I had some good things to say.  I think I have more good things to say but less time to write them down.

So I'm going to further my multitasking efforts.  I'm going to ride my stationary bike and blog at the same time.  I ride my bike every day, and usually knit or fold paper while I ride and watch TV.  But now I'm going to up the ante and get a table that goes over the bike so I can do things on my laptop while I bike.  I may not be blogging every day, but hopefully a few times a week.  

And I'm working on that post about the Vertex VX 809 trial.   

My Blog List

Site Meter