Learning To Live

I feel blocked tonight. I usually come to the library on Wednesday nights, now, and write for at least one hour.  I used to go dancing on Wednesday nights, but lately I've had so many issues with my legs getting swollen or my lungs not being the best, or being afraid of catching something.  I am sad that my pre-transplant dreams of dancing up a storm went up in smoke with the complications I had and still have.  I thought I'd be joining my friends in advanced classes, dance weekends, and private lessons.  I took a couple more advanced classes last summer - but I was too sick to continue.  I was always getting nauseated or nearly passing out during the more challenging parts.  My body still can't keep up and it pisses me off.  Also, my financial situation is almost the exact opposite of what it was when I was married.  When I still had CF lungs, I didn't mind if I missed a class here or there, even though I'd already paid, because money wasn't a ...

On Friday, the movie "Five Feet Apart" opens.  I'm thinking of going opening weekend.  It's a romance about two teens with CF.  The kicker is they are supposed to stay six feet apart for infection control.  There's my first problem with the movie.  The CF Foundation around 2014 changed that policy to say that no CFers should ever be in the same indoor space.  At outdoor events more than one CF person is allowed to attend, but there they must remain six feet apart.  The whole premise is wrong, according to current policy (say, the last 5+ years or more).  Here are more of my thoughts so-far.  I hate this movie.  I hate the inaccuracies already.  I hate the bad comparisons the HR team made (they compared a long distance relationship to the situation in the movie and to the hardships of cystic fibrosis.  It's not the same.  It's nothing like that.   Not being able to touch the person you love, EVER, because of a r...

Today a friend of mine posted THIS article on Facebook.  At first I didn't read the article.  I couldn't.  My first thought was, "Oh great... someone beat me to writing my book."  I was a little bit angry that this CF mom got her daughter's journals published by a big publishing house because I know the odds are that won't happen to me.  The book I'm working hard on is a memoir of my life with cystic fibrosis and my experience with double lung transplant.  I've taken the journals I've kept since I was 11 and inserted key parts into my memoir.  And the woman in the article had her journals posthumously published.  I've joked in the past about someone coming across my journals when I'm gone and publishing them, but that's not what I want.  I want to write while I'm here.  I want to share my story with people who identify with it and with people who can learn from it. This is the real reason I'm working with my writing coach...

Hey Everyone! It's me!  I'm back!  And I have new lungs!  I thought I would relaunch this blog because I have a lot to say and I'm really tired of making incredibly long Facebook posts.  There are many, many topics I would love to cover here - including experiences with my lung transplant and the complications I had, my troubles with insurance companies, living my life post-divorce, etc.  I also want to keep people updated on my health, but hopefully that will be a small part of my blog because I will continue to do well!!! Thanks for reading! Carla

June 27, 2005, age 19 Goals: 1.      Gain weight. For real - I want to be 135. Currently, I weigh 122. I know that 135 is an unrealistic goal, but it's the healthy weight for someone of my height. I really want to weigh 130. I need to change my views on food. I've realized that for me, eating is part of my health routine - it's just as important as my other treatments. 2.      Stay at school for the full semester. I will take care of myself - and if one of my classes is too stressful or taking up too much time, I will just drop it. Taking care of myself is a full-time job, so from now on I'm looking at things differently. It's like I'm taking a few classes on the side, but my job comes first. My health is first. I can always re-take a class, but I can't un-do damage in my lungs. 3.      I will not be hospitalized before next May. Dr. Green said when I got out of the hospital in April that he seriously doubted that I w...

I love fall.  I'm not a pumpkin spice girl, but I am a boots girl.  I bought two new pairs this fall because I love boots so much - I have boots in 4 colors now.  So I think I'm set for awhile. Today I went and put on my leggings and top, and as I was putting on my socks I had a flashback to last fall - which was pretty damn rough.  So I wanted to make a list of things I am thankful for today that weren't possible last year. I'm thankful that I was able to put my socks on today - all by myself - and then I was able to walk to a different room and put on my boots - all by myself.  All this, while not wearing oxygen.  Last year I had to have Dan help me get dressed and undressed most days because it was too hard to breathe and get dressed at the same time.   I'm thankful that I can shower on my own - a real shower, in the shower.  Last year Dan was helping me clean up in the bathtub and washing my hair.  But I'm well enough to do it all b...

Last Wednesday Dan and I went to a quaint little restaurant for dinner.  We sat down and ordered, and I told Dan I would go to the bathroom and be right back.  I walked to the bathroom and as I pushed open the door this wave of memories hit me. The peacock wallpaper reminded me how hard it was to push the door open and how I couldn't breathe just from trying to walk the 50ish feet from our table to the bathroom.  The memories were from the last time we were there, about December 26th. We were there for brunch that day, and it was a struggle to get me out of the house.  It was a struggle to get me out of the car and into the restaurant.  I had a coughing spell and had to sit down in the front area of the restaurant and catch my breath before I could hobble and gasp my way to where my friends were seated.  Soon after I sat down, I had to go to the bathroom.  Dan offered to walk me there because I was breathing so poorly, but I refused his help because I ...

It took me EIGHT months, but I got my FEV1 back up to 40%.  I'm being discharged from the hospital today and don't have to do home IVs this time.

I’m home!  Can you believe it?  Because I’m having a hard time believing it’s real and it could last.  So much has happened in the last few days, I feel writing a giant update on my blog is the best way to update everyone.  The general background: After I got a cold around the 4 th of July I was hospitalized for 3 weeks.  I came home, not really better, and then got slowly sicker. I was home for 2 weeks, and then I ended up being taken by ambulance to a nearby hospital because my pulse ox was so low and my pulse was so high.  I went home on oxygen.  Less than a week after that, I was back at the hospital in Milwaukee and spent almost 2 weeks there.    The more specific update and recent details: On Friday I did my PFTs.  I was POSITIVE they were going to be at least a little better.   On Tuesday my FEV1 was 34%, and on Friday I was hoping for at least a 39%.  My reality was 30%.  My FEV1 went down, o...

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 dor...

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 ...

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 understa...

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!

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 scr...

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.  Somet...

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 smil...

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.