Friday, January 26, 2018


The first time I was completely blindsided by a bad breakup was in 2010. A few weeks before my planned wedding I got a phone call that I never expected to receive. I was told that my dependable and completely reliable enzymes (Creon) were being removed from the market, never to be used again. This breakup came without warning and I was quickly forced to say goodbye to Creon and hello to Zenpep.

Eventually, I settled in with my new enzymes and soon realized that the new enzymes were an improvement from the old brand. For the past 7 years all has been well.

And then it happened again!

I called to refill my enzymes earlier this week only to hear the pharmacist explain the formulation to Zenpep has changed! What?! Noooo! Seriously, why do they mess with enzymes? I received my new Zenpep today. The Protease was reduced by 5,000 UPS units and Amylase was reduced by 25,000 UPS units! I have no idea what that means for my digestive system, but it isn't really a fun thing to experiment with.  I am hoping this current break up will ultimately be for the better and if not, I hope I find a rebound enzyme soon.

Saturday, January 6, 2018

Late Resolutions

There are two things I can always count on when January rolls around. My insurance will suddenly have trouble filling some (or all) of my medicine. And the other is that my gym will suddenly get crowded.

My morning workouts in the winter are ideal. Most of the summer swimmers abandon the pool when the temperatures drop and it is not uncommon for me to have the entire pool to myself. When I am done I have the showers to myself, the changing room to myself and at times it feels like the gym is reserved only for me! Pretty amazing, right?

Everything changes once the new year rolls around and the gym fills with people hoping to fulfill their new years resolutions. The day after New Years (Tuesday) I was bracing myself as I walked into the gym.  I was crossing my fingers there would be a lane open in the pool and a shower available when I was done. The strangest thing happened though, the gym was just as quiet as always. In fact, the rest of the week remained extremely quiet. It was bizarre, but I wasn't complaining because I never had to worry if I would get a lap lane or not.

And then, randomly. on Friday all the people I expected to see right after New Years showed up. The gym was suddenly bustling and every single pool lane filled. It was a complete turn around from the day before. I guess everyone's New Years resolutions started just a little late this year.

Friday, December 29, 2017

Lungs Misbehaving

This month has gotten away from me! I am in shock Christmas has come and gone!! This Christmas Eve and Christmas has been one of my very favorite of all time. Having a 5 year old sure makes the holiday season magical! Unfortunately, outside of the holidays things have not been going as magically as I would like.

The past few months I was struggling with colds and allergies (who gets allergies this time of year, seriously?) and despite two rounds of antibiotics I had a really really horrible clinic appointment. Like, rock bottom low. I was heartbroken and utterly shocked. I didn't feel good, but I didn't feel nearly as bad as I did a few years ago with those same numbers. And to make matters worse my last clinic appointment was one of my highest in years...38%. To go from my very best numbers to my very worse in 3 months is heartbreaking. And all that changed was that I got two colds! I wasn't skipping treatments, I wasn't missing medicine, I hadn't given up exercise. So like all things related to my CF it was baffling.

At clinic they took my cultures, ordered a CT and decided to investigate what the heck was going on. What was interesting was my weight was stable, my O2 was fine and other than my horrible pfts I seemed okay. I checked online every single day to check my cultures hoping we would have an answer to my horrible numbers and also hoping the cause wasn't a horrible bug. When my results were posted it stated I had normal flora!!! Wait, what?! That thick greenish yellow sample was normal? I don't think so, but apparently they didn't grow anything interesting and it left us with little info on the next step.

Luckily, my CT was a touch more informative than the sputum sample. Although, again, I was a bit perplexed. The cause of my horrible numbers was plugging! Again?! This happened two years ago, but everything seemed to clear up with Orkambi (among other things). My doctor thinks my asthma is playing a huge part (showed up on my CT) so I started Prednisone in hopes of opening the airways and getting rid of some of the plugs. And to make matters a little more complex just as I am finishing up with prednisone I caught a virus and have been running fevers the past 12 hours and am worried whatever progress I made while using prednisone may be lost due to this nasty virus.

This was not exactly how I pictured ending 2017, but with CF things often do not go according to plan!

Saturday, November 25, 2017

Night Cough Survival

Night cough and CF go hand in hand! I don't know about you, but sometimes my night cough pushes me to the brink of sanity. The thunderous cough that keeps me awake all night, despite my body aching to sleep, always ensures the next day that I will feel like a zombie as I try to make it through the day. There are very few things that can be as aggravating as a cough that just. won't. let. you. sleep. Am I right?

For me, the dreaded night cough can be the cause of so many different CF issues: post nasal drip, lungs that just can't seem to stop clearing mucus, GERD, allergies, and the list goes on. Over the years and with some tips from other CFers I created a mental checklist that I go through while trying to combat my night cough. I figured I would put words on paper because it took me 30 years to come up with this list and thought it may help someone else that is on the brink of sanity because of a CF night cough.

  1. Inhaler: Sometimes this does the trick to open my airways and clear out whatever is causing my cough. Sounds too easy, right? Yeah, it usually isn't this simple.
  2. Cough Drops: Cough drops do nothing to my CF cough, but sometimes when I start coughing due to CF my throat gets irritated and it turns into a constant cough that isn't so much CF related. Or there are times when my cough is due to a cold and this can help. Again,  it isn't usually this simple, but I always try the easy fixes first. 
  3. Snacks: I learned this trick pre-diagnosis when I was a kid and used to sit on the couch at 2am and eat pretzels when my night cough would attack. Something about not being able to cough and swallow food at the same time can be enough to settle a nonstop cough. Weird, but true. Tea may work for some people, but for me it has to be actual food. Between night time cough drops and snacks I am sure my dentist hates me.
  4. Pillow Mountain: This is a tip another CFer gave me. Bare with me because it sounds crazy. Sometimes if my cough is due to sinus issues this does the trick. I sit with my legs crossed. Next, I stack as many pillows as I can into a tall pile right in front of my crossed legs. When the tower is tall enough that it comes at least chest level (but higher is better) I can then drape my body (face first) over them. Basically, I sleep sitting up (slightly hunched forward) with my head leaning forward on the pillows to keep the mucus from draining down my throat. The first time someone suggested this to me I thought they were crazy. But you know what? Coughing all night is even crazier and this trick has allowed me many nights of (slightly uncomfortable) sleep which beats a sleepless night any day!
  5. Vest: I personally don't think the Vest is the best for of airway clearance for me in the waking hours, but I do it because I am stuck doing nebs anyway. However, the vest can be my night cough miracle cure. When I have tried everything to calm my cough and sleep and am at the brink of going crazy I can usually convince myself to move to the living room with my blankets and pillows. I then stap on my vest and set the time to 60 min (the max), and start shaking. My body is usually so exhausted the second my cough stops I fall asleep despite the shaking of the Vest. It can be so hard to drag yourself out of bed, and it can feel so unappealing to shake violently while coughing and trying to sleep, but this set up has seriously saved my sanity more times than I can count.
Can you tell what I have been doing the last few nights? Yup, coughing and all of the above: #1-5.

Monday, November 20, 2017

Kaylee Chatter Part 8

"Some kids in school try to smack flies that get in the class. My friend says she kills them sometimes. She calls it kill! That is really bad for the flies. I guess kids just don't know how bad that is for the flies. They are only five (years old) so they just don't know."

My childhood stuffed animal has become one of Kaylee's favorites. She brought the stuffed animal  along for her flu shot. That evening she told me,
"Kitty helped me be brave. Maybe because she has a little mommy love in it."

My husband: "I love you."
Kaylee: "I know. I just don't think about it all the time. Like I don't spend all day thinking about how much my parents love me. That's just not my lifestyle."

When Kaylee started school I bought us matching school shirts. I volunteer once a week and usually just put on the school shirt because otherwise when would I wear it? Last week I was getting dressed when Kaylee walked in.
"You're wearing that shirt again? That is so embarrassing for me! I mean you have good quality clothes you could wear. You don't have to wear that shirt everyday."

Friday, November 17, 2017

Time Is Flying By

This happens every single year and yet it still surprises me! The second Halloween comes the rest of the year seems to be a blur. Life just flies by after Halloween night. How are we already to Thanksgiving break? I wanted to do a quick life update because things are going by too quickly for me to document.

So many things are changing in our home. Kaylee's last day of soccer is tomorrow. I remember the day I signed her up in April I looked at the end date, November, and it felt so very far away. And her last day is tomorrow! The whole season went so fast! I loved watching Kaylee play soccer and enjoyed going to all her practices and games up until about a week ago. The weather has turned wet and cold and now I am ready to not stand in the wet cold grass at 9am on a Saturday. However, I am excited to watch her again when the weather is nice next summer.

I started a girl scout troop with a neighbor a few months ago. I am having so much fun in my low pressure 4 hour a month "teaching" job. It has reminded me how much I love working with kids and with only 7 kids total it is a dream job. Except the non-existent pay...that part isn't so dream like. I absolutely love having some quality time with Kaylee and other girls her age. I love the female empowerment, I love fostering their creativity, I love watching the girls work together, and I love this age.

I have also been helping in Kaylee's classroom every Tuesday and it has been so fun to watch how much the kids have changed. It has been amazing to watch Kaylee's progress and to be an active part of her schooling. I love seeing her in class and interacting with her friends. I also love sneaking peeks at her work and witnessing the growth in what she knows and understands. I think learning to read and write is just as exciting as when  kids learn to talk the first time. It opens up their world so very much!

I am excited to enjoy Kaylee's first true school vacation and nine consecutive days that I get her all to myself (and my husband).

Friday, November 10, 2017

Proving CF Wrong

Chronic illness can teach so many invaluable lessons along the way. CF has taught me to value every single day and to really enjoy every good day. Knowing at any moment CF can make my day miserable (low energy, GI issues, shortness of breath, respiratory infections, the list goes on) makes me so appreciative of every day I wake up and feel good! It has taught me to appreciate those around me as well because we never know how much time we have with one another, not only because of CF, but because those of us with chronic illness realize how fragile life is and no one is ever promised another moment.

However, in order to survive with a chronic illness and still function in a chronically well world I have found that I have adopted some less than healthy lessons along the way. I have learned over the years how to play pretend in a way that I can almost fool myself. Through the years I have perfected how to pretend everything is okay, put a smile on my face and act as if everything is fine even when I am so very far from okay. Living a life when my health often demands my attention and tries to take center stage on a regular basis has caused me to pretend to the outside world that those problems and sickness and hurt just don't exist. This has allowed me to get out and still live a fulfilled life despite CF trying to get in the way. And yet, when we pretend everything is okay (enough) everyday of our lives it can get tricky to know when to stop pretending and put ourselves, and even CF, first.

I, personally, could give a million examples of when I waited too long to raise the white flag and ask for help. Whether pushing through made me wait too long to call the doctor, not change antibiotics as soon as I should, commit to things I shouldn't, or show up when I should have stayed home it became a pattern I didn't know how to stop. Pretending I was fine and pushing through became such a way of life I got to the point that I just stopped being authentic in what I could handle.

See the problem is that by doing everything even when I feel bad I felt I was proving CF wrong and not letting it dictate my life. You hear it all the time in the CF community. "CF is part of me, but it doesn't control me" type "inspiring" quotes get ingrained into your mind. It is an attitude that is common among many of us with CF (and chronic illness in general). Push through, preserver,  and live the life you want despite your health issues. At times this can be a good philosophy, but it can also discredit how much CF does play a role in our lives. If we are super honest with ourselves and with one another CF DOES get in the way. And you know what? It is okay to admit that it does at times.

In an attempt to not let CF win I would try to do too much just to spite Cystic Fibrosis. Yeah, I have an infection that is causing me too feel as if I am full to the brim with toxic waste and my fevers are causing every muscle in my body to ache, but if I pop enough ibuprofen I can show up and help out because otherwise CF stole this opportunity from me. Sure, I feel like death, but I don't want CF to ruin this time with my daughter/husband/friend so I will drag my tired and broken body to that birthday party/outing/dinner/event and pretend I am having fun.

And in the end I am realizing that by trying to prove to CF that I can pretend it doesn't exist and live a "normal" life I am actually letting Cystic Fibrosis have the upper hand. At times I am making choices to prove CF wrong rather than because I genuinely want to make that choice. When I feel bad, I would rather curl up in bed with a book or take a nap, but because CF is making me feel bad I often force myself out of the house anyway. So, in reality I am going out because of CF rather than staying in for me.

As my life gets more hectic I am trying to learn to balance what I can handle and what I genuinely want to do for me and my family and not just to prove to myself that CF doesn't have the upper hand. After 20 years of pretending I am realizing old habit are hard to break, but as I approach my mid-30s I realize I don't need to hang on to some of the old unhealthy habits of my youth and what better time to change for the better than today?