Monday, January 16, 2017

My Fitbit Proved I Was a Lair

I think of myself as an exercise conscious person who prioritizes my health. So when I got a fitbit I was curious as to my results, but assumed I would be in pretty good active standing. My fitbit proved I was a lair! After a few weeks of using the fitbit (omitting the week we got the stomach flu) here is the honest truth of my exercise\self care.

The Good:
Sadly, this is the only good news my fitbit had for me! I have the fitbit flex 2 which means I can swim with my fitbit and it keeps the stats of my swimming workout which I love! The fitbit told me I actually swim much further than I was telling myself. When I changed gyms years ago I went from a gym that had an Olympic sized pool to a gym that does not. The drastic size different always made me downplay how much I swim. Not only do I swim a further distance than I thought, but I exercise longer than I thought. I always said I swam for 20 minutes (I never time it and just try to get to the gym, swim, shower, and dress within an hour), but my fitbit let me know I swim continuously for 30 minutes.

The Bad:
I am much less active than I thought! To be fair, it is winter and it has been cold and very rainy. Although we usually still get outside to play and walk despite the rain we just don't last nearly as long as when the weather is nice. Also, my winter garden this year is pretty basic and filled with food that needs almost no care (garlic, lettuce, peas, and perennials) so I am not spending much time out there. However, I was shocked that most days I struggled to get 10,000 steps. And without making too many excuses, swimming doesn't give me step credits (obviously) so despite working out every morning when I get home from the gym I have only logged ~100 steps from the parking lot and changing room.

The Ugly:
I was also curious about my sleep because I know when I wake up early to swim I am probably not getting as much sleep as I should. I had no idea how bad my sleep stats really are. I average around 6 hours a night. I also have a few wakeups (which I knew). I also have a lot of restless sleep, which I can't really help and assume everyone does. I was just shocked at how few hours a night I get. No wonder I feel so tired all the time! Lack of sleep and CF really aren't a great combination so I am now consciously trying to put myself to bed at a more reasonable time for my early wake up time.

Now that I know where I lack when it comes to leading a healthy lifestyle (SLEEP and walking) I am hoping to make changes to lead a healthier and more active lifestyle!

Friday, January 13, 2017

Altitude Testing

It has been five years since I have been on an airplane. How sad it that? Well, that is about to change in a big kind of way. However, my lungs have significantly declined over the past five years and so I was concerned that if I try to fly, my oxygen saturation may tank. I really don't want to be responsible for grounding a plane so I decided to voice my concern with my doctor. We decided that altitude testing would be appropriate before I step foot on a plane.

I wanted to share what altitude testing consists of for anyone that may find themselves in a similar situation or if you are just curious. Altitude testing is supposed to simulate what breathing feels like at 8,000 feet which is how high most commercial planes go. I was super nervous for the testing, not because I was worried it would be a difficult test, but because I really wasn't sure I could pass which would mean I would require oxygen to fly. My oxygen saturation on room air is still really good, 98%, but my lung function being around 32% makes me more likely than someone with good lung function to struggle with any changes in altitude. I also had a quick panic while waiting to be called back for the test because my legs were a bit (lot?) prickly as I get lazy with shaving in the winter and I panicked I may be asked to change into a gown!

When I finally got called back I quickly relaxed realizing there was no need to change from my street clothes. Whew! There were two RTs waiting for me, but they were waiting on the doctor who had to be present during the test in case something went wrong. After signing all the consent forms I was hooked up to several monitors. There were 5 heart monitors, a pulse ox (on my forehead! Apparently my hands were too cold and not reading well so they wrapped a pulse ox reader to my forehead), a nose cannula, a blood pressure cuff and finally a mask that looks exactly like a bipap mask (or so I am told because I have never used a bipap). The oxygen cannula was used so that if any point during the test my oxygen SATs fell below 89% they would slowly administer oxygen to see what amount of oxygen I would require while traveling via plane.

After everything was set up they turned on the mask. Apparently, air with a lower amount of oxygen (to simulate the air on a commercial plane) was being blown into the mask. I couldn't feel any air being pushed through the mask, but they made me sit there for a few seconds to watch my oxygen saturation. They asked how short of breath I was using a scale from 1-10.

They then asked me to talk because they want to simulate what a plane ride would be like and likely I would be talking at some point. Although I am not a shy person randomly chatting to three men while having wires protruding from your head, all sides of your body, and while wearing a huge mask was not totally in my comfort zone. Luckily, everyone was nice and I got in a flow of telling them about our future vacation. Although about every 60 seconds one of them had to interrupt to ask me about shortness of breath and they often looked away to check the monitors. So basically, I was chatting, but wasn't really being listened to which made talking feel somewhat pointless (even though I know I was doing it in the name of science!).

My oxygen was fine so they made me stand up and march in place (while talking) which again was somewhat humorous considering the monitors. Every one minute I was asked about my breathing and every two minutes I had to quickly sit down when the arm cuff started reading. Oh, to be a fly on that wall, I am sure the whole thing looked so absurd!

After a few minutes my oxygen was still fine so they had me sit and stand (like squats) over and over. The told me that if this didn't drop my sats nothing would. My oxygen saturation hung on through the squats although they did hit 89% which means my oxygen was only 1% away from being considered too low. Luckily, I likely will not be working out on the plane. At the end of the test they congratulated me because I passed and could fly without oxygen!! It was such a huge relief!! They did say that if I were to get sick before the flight it would be best to postpone because a respiratory infection may bring my oxygen saturation down. They did, however, feel that even if my oxygen dropped a little I would probably be okay to fly, but should bring a pulse ox reader and limit my activity. Of course, on the way to a trip it is much easier to cancel than on a flight home especially since I couldn't extend my stay longer than I had medication supply for so hopefully I will stay healthy on my next vacation.

Sunday, January 8, 2017

Silver Lining

A few days after New Years our family came down with a stomach bug. I will spare you the details as I am many of you are much more familiar with the stomach "flu" than you would like to be. However, despite the horror, there was a silver lining I thought I would share.

Kaylee caught the bug first. I ended up as Kaylee's head nurse because my husband was at work for most of the day. She was very sick for about two days. Of course, as it often happens, as Kaylee started to improve I started to feel a little off. And one evening I passed on an old fashion and a movie to lie in bed (or roll around in bed trying to find a comfortable position) while gripping my stomach. Needless to say I was hit hard and as with everything, I got a weird complication in that my fevers got out of control and I slept about 20 of the 24 hours that made up Thursday.

Kaylee, who was on the mend decided to become my head nurse. She had slept in our bed the previous two nights (running a sick child to a toilet is much easier when you are next to them) so when she woke up and found out I was sick she announced she would be right back and ran from our room. A few moments later she walked in and presented me breakfast in bed. Of course the tray was a baking sheet, the plate was a coffee filter (she can't reach the plates), and the breakfast of choice for a person with the stomach flu was a easy to digest pile of mixed nuts. And she presented me a plastic disposable water bottle which gave me a moment of pause because we don't buy disposable water bottles, but she assured me she poured out the old water and put in fresh water.

After breakfast Kaylee informed me that if I got sick she would hold my hand so I wouldn't be scared. As her mother I never left her side when she was sick and miserable and it was heart whelming that she wanted to be there for me as well. Of course, when I did get sick she dutifully came with me to the bathroom. I took one look at her face and told her she could leave if she wanted to and she ran out of that bathroom as fast as her four year old legs could carry her. It is the thought that counts, right? By the time my husband got sick Kaylee had lost some of her empathy because with both parents sick, being a kid just isn't fun. However, I loved seeing the thoughtful side of my daughter who wanted to take care of her mama (even if she needs to work on her follow through).

Sunday, January 1, 2017

The New Year

2016, as with every year, was a mixed bag of good and bad. However, overall I have to say that 2016 has been kind to us. My health was the best it has been in several years (thanks, Orkambi) and outside of a health blip in the summer I was pretty stable. Kaylee and my husband are healthy and we are all happy, what else could we ask for?

There are lots of changes coming our way in 2017. A major life change is in the works and I am sure a dozen more changes that we are completely unaware of will be hurled our way as life seems to be unpredictable and full of surprises (both good and bad). I am hoping for continued stability with my health and lots of love and laughter with my family in 2017. I hope everyone reading this blog finds peace, love, and health this coming year.

Friday, December 30, 2016

Kaylee Chatter Part 2

  • "I am so cold right now I wish someone would pour 100 hot chocolates all over my body right now."
  • Kaylee still says aminal and knows she says it wrong, but can't figure out how to say it correctly. "Mom, why do I still say aminal wrong. When I was one it wasn't surprising I would say words like aminal wrong, but by three saying aminal instead of the right way is very surprising!" I love how she says aminal and will be sad when she finally figures out the correct way to say it.
  • "Mom, before the earth existed where were all the mommies and babies?"
    "That is a great question!"
    "Babies come from mommies bellies, but if there were no mommies, where were the babies? Like, was there just a wood floor with babies rolling around before mommies existed? I just don't get where they came from"
    Stalling to get my thoughts together, "Umm, yeah, well...."
    "Is it hard to explain, mom?"
    "No, it is just that I don't know the answer."
    "Like I thought they might be in the dirt with the worms, but wait, dirt didn't even exist."
    "Baby, that is a great question, but we don't really have the answer to those questions."
    "Maybe somebody else knows... maybe we can look it up on the internet"

    Maybe, Google can answer our existential questions... if only it were that easy!

Thursday, December 29, 2016

Urgent Care on the Eve of Christmas Eve

My pre-Christmas saga started Thursday morning when I woke up feeling extremely bloated. CF has not been kind to my lungs, but I have been extremely lucky in that it really doesn't effect my digestive system unless I forget my enzymes. So when I woke up super bloated the day of Kaylee's preschool Christmas party (I will do a Christmas post soon) I was less than excited that the one time my digestive system decided to act up was when I had to be out of the home all day.

As the day went on the bloating became more severe and I started to have pain in my lower right side. That evening I started running a low grade fever. I went to bed with a warm rice pack and looked to the worst doctor in history, Doctor Google. Dr Google concluded that I would not be around long enough to see the light of the next day. Figures, that is his answer to everything.

Luckily, the internet doctor was wrong and I did, in fact, wake up the next morning. Unfortunately, the pain seemed worse and started to wrap around to my back. I decided to call my doctors office because I started to suspect this wasn't just bloating pain. I wanted to be seen before the weekend (which just happened to be Christmas weekend) in case things got worse. Unfortunately, everywhere was closed due to it being the Friday before Christmas. So I figured I would call the on-call nurse, which I should know by now, is as bad as Dr. Google. She told me to cease all liquids and food and get to the emergency room as soon as possible since I probably had appendicitis. I tried to inquire about an urgent care instead, but she insisted that I go to the ER because urgent care wouldn't be equipped to handle my appendicitis. So, I did the opposite of her advice and went to urgent care instead (I was pretty positive I did not have appendicitis).

Urgent care doctors know nothing about CF and I was pretty sure they would not diagnosis me correctly, but I did want to confirm I didn't have appendicitis and I was a little concerned I may have a kidney infection (or something similar) that would require antibiotics. The urgent care doc came in with an internet printout of CF digestive issues. She ruled out appendicitis and decided it was either DIOS (a blockage in the intestines which can be a CF problem) or kidney stones. I knew I did not have DIOS (although a partial blockage was a realistic possibility) and I was not convinced of kidney stones. However, I knew I would make it through Christmas and so I went home relieved that whatever was ailing me wouldn't kill me!

The Monday after Christmas I got a phone call from urgent care telling me that my results came back and I had a bladder infection (I assume the bloating may have been a untimely coincidence and had nothing to do with the infection which was causing the pain). I got a prescription for antibiotics and within a few days I felt good as new. Whew, I never realized how fast antibiotics work for non-CF issues. My bladder infection took about 24 hours before my symptoms disappeared which seemed miraculous since I am used to two weeks or longer for my lungs to respond to antibiotics.

Tuesday, December 13, 2016

4 and a half

Dear Kaylee,
There was a time, not so long ago, when I would lay in bed while rubbing my belly that kept you safe and warm and I would picture being your mother. I could easily picture myself mothering baby Kaylee, but for some reason I could not get my mind to move on past infancy. Rocking, soothing, nursing was something I would imagine daily, but being a mother to a walking, talking, school aged child was beyond my scope at the time. With you still nestled in my belly, it was hard to see so far ahead and in reality, I had no idea what it meant to be a mother at the time. I didn't have the experience to really know what motherhood entailed.

Fast forward 4.5 years later and I have to admit, that each year of mothering I feel my love for you grow (how is that even possible?!) and I love my job as your mother more and more. Now, I can easily picture mothering you all through your school years and even mothering you when you're a mother yourself. Sure, I still have no idea what I am in for when it comes to raising a teenager, but you are no longer this mystery tucked away below my ribcage. You are my daughter and watching you grow is the biggest gift I have ever been given.

I brought you out to dinner last night, just the girls, and when I told you that you were officially 4.5 your eyes grew big, "I am 4.5? I always thought that meant you were a grown up, but I am not even a teenager yet!" You said with some surprise and a lot of enthusiasm. So how can I sum you up as a 4.5 year old? I think the best way to describe you is my mini me. You and I are two peas in a pod! We like to do all the same activities and we absolutely adore spending time together. You share my animated (and dramatic) way of talking, my love for baking, crafting, and being creative. You are sensitive to others (and very sensitive to what you watch on TV/movies. If your anything like me you will have to check ratings for the rest of your life, sorry love) and love to shower the people you care about with love. You take your time making friends and you prefer a few close friends. You are also a home body which you absolutely got from me!

Of course, you are your own person too! You have a love for chocolate that I will never fully understand. You are so inquisitive and smart. You are so observant and take in so much of your surroundings. Your daddy and I worry that this may be the last Christmas you believe in Santa because you are so logical that you already have doubts about a man that can make it all across the world in one night and you don't understand how he can fit in a chimney. You are a touch of a hoarder which makes me cringe! I often find you digging in the recycling bin (and occasionally the garbage) to find things for your art. You find something to bring home everywhere we go to add to your collection of junk that will become art: a receipt from Costco, a leaf, a stick. I on the other hand, despise clutter and have to find times to declutter your art corner for my own sanity!

I know as you get older you will slowly drift away from me as you find yourself and who you want to become. For now, I am basking in the fact that you love spending time with me and you are my buddy wherever we go. Life is such a wild journey, but I know no matter what I am so very blessed to have you as part of my ride!

Love,
Mom