Learning To Live

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. 

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 iPo...

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 ...

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.   

Today is Great Strides.   I am not going. This has been a long and agonizing decision for me.   Ultimately I am doing what I can emotionally and physically and I shouldn’t beat myself up for this.   But I will probably continue to do so anyways.   I started a Great Strides team in 2006.   Four people walked with me that year: Darin, Sarah, Callie and Carly.   Each year since my team has grown and evolved.   In 2009 my best CF buddy Lauren and I combined forces to create “The Lucky Ladybugs: Flying Towards a Cure.”   2009 was the year we raised the most money - $20,000.   Since then I have done an annual letter to family and friends.    This year I wasn’t up to doing the letter because of all the craziness with our sudden wedding.   The Lucky Ladybugs has been really special to me – Lauren and I got the name because we both have Ladybug tattoos on our right wrist.   We worked really hard to build our team a...

First, THANK YOU.   Thank you to everyone who came to our wedding.   Thank you to everyone who was there in spirit and will celebrate with us at our big reception next June when we renew our vows.   Thank you for understanding our reasons for moving up the ceremony.    Thank you for dropping everything and coming to Wisconsin with only 3 weeks’ notice.   I cannot express how much it meant to us for you all to fly in from around the US to spend a whole weekend celebrating our love.    I will admit I put a lot of work in these past three weeks, but I never imagined how spectacular everything would be.    It was beyond wonderful and beyond everything I hoped for.    I can’t stop smiling and laughing and dancing around when I think about this weekend.     Because of all the love Dan and I have received, I want to publicly acknowledge everyone and give those of you who couldn’t be there in person a little rec...

This post is to catch up from the Paul Simon concert until today.  I know some people have wondered "Where has Carla been?"  For the most part, the answer is "with my boyfriend, Dan." The day after the Paul Simon concert I went to Illinois for my grandmother's funeral.  Dan came with me. For Thanksgiving Dan and I went to Michigan to visit his parents. We threw a Christmas party the weekend before Christmas and moved a lot of my stuff into Dan's house. Over Christmas we went to New Orleans with my parents and brother. We spent a weekend in Milwaukee in January. Dan and I went to Florida to visit his grandparents and to go on a cruise.  It was fantastic. Dan's grandmother passed away the week after we got home from the cruise so we flew to Philly for the funeral.   The day after we got home from Philly, demolition on our kitchen started and I ended up in the hospital for two weeks.  After the hospital I spent a week with my parents to av...

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.

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

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...

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...

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 About.com 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, an...

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. 

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...

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 ...