Two weeks ago I had my CF clinic. I felt pretty confident going in because I had been swimming 5 days a week for 9 weeks at that point. I felt good, energetic, and was still compliant with my treatments. I was excited to tell my doctor I was swimming and because summer is usually my healthy season I was more than ready for a quick and easy clinic visit.
Soon after arrival the RT brought in the pft machine and I did my first blow. My eyes scanned the computer screen waiting for the results. The numbers that flashed on the screen shocked me. My numbers were lower than I had seen in a very long time. I sorta laughed telling my RT that I must have made a mistake because those numbers were ridiculously sad. However, there was a sinking feeling in my heart because I have never actually messed up a pft, after doing them for so many years it is a hard thing to do wrong. Just as I had secretly expected, but hoped to no end was not true, the next two blows were consistently low. I was left dumbfounded. Everyone seemed a little baffled that I was working out, felt great, and had no clue that my numbers had plummeted. My doctor ended up deciding to put me on oral because of a unusual (but not concerning) new bacteria in my culture. I agreed, happy to do something, anything to improve my horrible numbers, but was utterly confused as to how I could have an infection and feel... well perfectly normal.
Fast forward three few days, I was waiting for my meds after a problem with my first pharmacy, when I started to feel the telltale signs of an infection: fevers. The next several days my fevers flared, despite my lungs feeling okay. If it weren't for my low pfts I would have easily blamed the fevers on a different infection because my lungs actually felt fine, but I kept reassuring myself that my low numbers confirm that my lungs were the ones wreaking havoc on my body.
And then one week after my clinic appointment, an entire week after my low numbers I sat up in bed after a good night sleep to start my day only to feel the weight of my lungs, brimming with infection causing them to feel monstrously heavy. So heavy in fact, that I felt they may just fall from my body to the mattress below. My husband saw my grimace, heard the sound that puffed from my chest, and watched my body move in the way it does when your lungs are completely infested with millions of bacteria that are quickly taking over and said, "there it is...". He was right...there is was. The infection had finally reared it's ugly head a week after it tried to warn me.
Thursday, June 30, 2016
Sunday, June 12, 2016
Four Years Old
Little Kaylee,
You are four years old today. My first real memories are from when I was four and for some reason I have always held being 4 near and dear to my heart. Because all of my four year old memories seem so carefree and so full of joy I feel so excited for you to embark on the next year. As excited as I am for you to experience being four years old I am finding it hard to sum up who you are as a three year old in one little blog post!
You have decided that you are wise beyond your years and that unfortunately my 32 years on this Earth did not provide me with the same depth of knowledge you have obtained in your short 4 years. You ask a lot of questions about the world, but you often disagree with my answers. After disagreeing with me you are sure to back up your facts that are pointless to dispute.
Kaylee: Are there blue carrots?
Me: No. There are yellow, red, orange, purple, and white carrots, but there are no blue carrots.
Kaylee: Yes, there are! When I was living in China, blue carrots were everyone's favorite. You just don't have them here.
You can be so delusional that you once argued that daddy didn't know his own mother's name. You claimed that "back when you were a teenager, your abula told you here real name and daddy was wrong.
Clearly, your confidence is not lacking.
You still love anything creative. You draw, color, create for large portions of the day. A few months ago you found my adult coloring book and now it is officially yours. Another creative outlet you seem to enjoy is helping me cook or bake. Whenever I enter the kitchen you are quick to grab your little chair and pull up next to me at the counter. For the first time, your assistance in the kitchen is actually helpful. For breakfast, you know how to get the eggs out of the fridge, crack them, whisk them and then put the bread in the toaster all by yourself. Sure, sometimes our eggs have a little boost of calcium and some crunch for texture from those eggshells that found their way into the pan. Baking still makes a giant mess as your aim with flour and sugar seems to be a little off. You do know how to level off the measuring cups which always makes me smile! You are becoming a Foodie like your father and like to talk about "textures" (which you use to mean flavors) whenever we make something new. "This has a lemony texture and is a little bit sweet"
You have decided, once again, that sleep is pointless. You often assure me as I tuck you into bed that you will not sleep under any circumstances. Many mornings you insist that you were laying in bed the entire night wide awake. The few times I try to tell you I checked on you and you looked as if you were sleeping you assure me that you were in fact not sleeping, but rather just staying very still. Although you apparently haven't slept in months you do find your way to our bed in the mornings. Most weekday mornings I am at the gym, but I come home to find you snuggled up to your daddy sound asleep... err laying very still. There is nothing more precious than seeing the two people I love most in this world snuggled together.
As you get older I find it harder and harder to sum up your likes and dislikes, your personality, and your current stages in one little post. You are affectionate and love to snuggle, you are in tune to other's emotions especially mine. As you get older our bond changes, but it seems to grow stronger with time. You talk all day long and surprise me with the vocabulary you pick up. You have come out of your shell so much the past few months. You are no longer shy or unsure around people you don't know. You are gaining confidence in your Spanish as well. You are stubborn and independent. You are beautiful inside and out.
I love you in a way that I could never put into words! Happy birthday,
Mom
You are four years old today. My first real memories are from when I was four and for some reason I have always held being 4 near and dear to my heart. Because all of my four year old memories seem so carefree and so full of joy I feel so excited for you to embark on the next year. As excited as I am for you to experience being four years old I am finding it hard to sum up who you are as a three year old in one little blog post!
You have decided that you are wise beyond your years and that unfortunately my 32 years on this Earth did not provide me with the same depth of knowledge you have obtained in your short 4 years. You ask a lot of questions about the world, but you often disagree with my answers. After disagreeing with me you are sure to back up your facts that are pointless to dispute.
Kaylee: Are there blue carrots?
Me: No. There are yellow, red, orange, purple, and white carrots, but there are no blue carrots.
Kaylee: Yes, there are! When I was living in China, blue carrots were everyone's favorite. You just don't have them here.
You can be so delusional that you once argued that daddy didn't know his own mother's name. You claimed that "back when you were a teenager, your abula told you here real name and daddy was wrong.
Clearly, your confidence is not lacking.
You still love anything creative. You draw, color, create for large portions of the day. A few months ago you found my adult coloring book and now it is officially yours. Another creative outlet you seem to enjoy is helping me cook or bake. Whenever I enter the kitchen you are quick to grab your little chair and pull up next to me at the counter. For the first time, your assistance in the kitchen is actually helpful. For breakfast, you know how to get the eggs out of the fridge, crack them, whisk them and then put the bread in the toaster all by yourself. Sure, sometimes our eggs have a little boost of calcium and some crunch for texture from those eggshells that found their way into the pan. Baking still makes a giant mess as your aim with flour and sugar seems to be a little off. You do know how to level off the measuring cups which always makes me smile! You are becoming a Foodie like your father and like to talk about "textures" (which you use to mean flavors) whenever we make something new. "This has a lemony texture and is a little bit sweet"
You have decided, once again, that sleep is pointless. You often assure me as I tuck you into bed that you will not sleep under any circumstances. Many mornings you insist that you were laying in bed the entire night wide awake. The few times I try to tell you I checked on you and you looked as if you were sleeping you assure me that you were in fact not sleeping, but rather just staying very still. Although you apparently haven't slept in months you do find your way to our bed in the mornings. Most weekday mornings I am at the gym, but I come home to find you snuggled up to your daddy sound asleep... err laying very still. There is nothing more precious than seeing the two people I love most in this world snuggled together.
As you get older I find it harder and harder to sum up your likes and dislikes, your personality, and your current stages in one little post. You are affectionate and love to snuggle, you are in tune to other's emotions especially mine. As you get older our bond changes, but it seems to grow stronger with time. You talk all day long and surprise me with the vocabulary you pick up. You have come out of your shell so much the past few months. You are no longer shy or unsure around people you don't know. You are gaining confidence in your Spanish as well. You are stubborn and independent. You are beautiful inside and out.
I love you in a way that I could never put into words! Happy birthday,
Mom
Sunday, June 5, 2016
7 Weeks
7 weeks ago my head was foggy, my eyes blurred as my alarm
rang out in the darkness that accompanied 5:20 in the morning. 7 weeks ago
dragging my sleepy body out of bed, in what felt like the middle of the night, felt like torture at best. 7 weeks ago I
left my house into the dark and frigid night air. 7 weeks ago I pulled
over to admire the moon laying full and heavy in the sky. 7 weeks ago my teeth
chattered as I walked the long outdoor hallway to the pool all while trying to convince myself
not to just turn around and go home. 7 weeks ago I struggled while I swam my
first few laps since last fall, huffing and puffing and sputtering. 7 weeks ago
I lived for the weekend when the gym wouldn’t see my face.
7 weeks later, my body is already waking before my alarm rings out. 7 weeks later by 5:20 the sun has
already made an appearance and the birds are cheerfully singing. 7 weeks later the
walk to the pool, still cold, no longer makes me shiver right to the bone. 7
weeks later, 40 laps comes relatively easy, my arms and legs accustomed to
the motions required for front crawl and breast stroke. 7 weeks later my lungs have
adjusted and my oxygen levels stay 90 or above (most of the time). 7 weeks
later, my arms show clear signs of definition and toning. 7 weeks later my hair
is dry as straw despite wearing a swim camp. 7 weeks later I weigh 3lbs more
than when I started, which I am convinced is muscle mass. 7 weeks later my body
craves my morning swim. 7 weeks later I dread the weekend when I don’t swim
because my cough will be more prevalent all day long. 7 weeks later I am proud
of myself for fitting this missing puzzle piece back into my self care plan.
A lot can change in 7 weeks.
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