Monday, October 16, 2017


The scorching summer sun has started to relax, shining less intensely and calling it quits earlier and earlier with each passing day. The clouds, something of an anomaly in the summer have started to make their brilliant fall appearance. The sky roars to life every few hours as evening starts to approach, with geese in formation finding warmer parts to call their winter home.

Fall is always bittersweet to me. The weather cools to perfect temperatures which brightens my outdoor loving heart. And yet, by October, the adventures of summer are only memories and the beaches, lakes and rivers sit alone waiting for the weather to warm again. I spend hours in the garden, removing the summer crops until my vegetable beds are vacant. A wave of sadness washed over me as I realize fresh melons, tomatoes and berries just bursting with sweetness won't grace our tables until the long cold days of winter, and the newness of spring have already passed. The seeds for the winter garden have been nestled in starter containers under a heat lamp waiting for the right time to be sown in my now lonely vegetable beds.

Warm cozy sweaters and scarves just can't possibly warm my soul the way the hot summer sun can. For now, I am finding joy in the kaleidoscope of fall leaves that are swirling around my neighborhood and the promise of magic in the upcoming holiday season. But there is still a little corner of my soul that is pouting because I already miss summer.

Saturday, October 7, 2017

Fevers, Flu Shots, and Colds

I was hesitant to write this post because the last thing I want to do is scare someone away from getting a flu shot since you getting a flu shot could save a cyster's (or fibro's) life and all. So I am going to preface this by saying that I have always reacted strongly to vaccinations. I get a fever from every single vaccination every single time! So this years flu shot was no different.

Monday morning I woke up with a little strange tickle in my throat. I kept wondering if the sensation could possibly be a cold, or allergies, or my imagination (funny how these symptoms popped up right after I did a post about how well my body was behaving). I had scheduled flu shots for both me and Kaylee that afternoon and I was a bit worried I may be coming down with something and wondered if I should delay the shot. I decided to get the shot anyway because I am going to be around a lot of kids in the next coming weeks and just didn't want to risk anything. We went to get our flu shots immediately after I picked Kaylee up from school. Poor kid had no idea that the errand we had to run would end with her getting poked with a needle. She cried when I explained why we were at the doctor and even tried to hide her arm from the nurse. The nurse told Kaylee to look the other direction. I started to say, "Focus on my..." when the nurse interrupted to say, "all done." Kaylee shouted with excitement, "That was TOO fast!" She didn't even realize that she just got a shot. She actually left the little shot room with a smile plastered on her face. Whew.

I was brave when I got my shot too and we went to celebrate with a little ice cream. That night, I got fevers which we all expected. The next day same thing and once again, expected. I should note Kaylee carried on as if nothing happened and no sign on a fever at all.

As soon as the fevers passed my cold hit. I had the usual, coughing incessantly for 24 hours followed by zero voice (from all the coughing). When the incessant coughing finally stopped I was left with a heavy chest and copious amount of watery mucus (happens every time my cold settles to my chest). And now I am in that weird period that my mucus is thick and gross and I know that in the next few days my mucus will get worse and I will be calling for antibiotics or it will suddenly clear up and I will be able to move on with life. Sigh! I have so much going on this upcoming week that I am really hoping my poor body can pull through this one.

Sunday, October 1, 2017

Two Years and Counting

This month officially marks TWO years hospital free!! I can't remember the exact date I was admitted so I am sure I am a week or two early, but I am celebrating now anyway. It is also 1 1/4 years IV free!

It has also been a little over 2 years on Orkambi. Coincidence? I think not! I can't wait to see what new meds are around the corner and how much healthier all of us in the CF community can be!!

Monday, September 25, 2017

Kaylee Chatter Part 7

"I used to think if we drove at midnight we would be the first people on the road. After we went to the wedding (we drove through the night) now I know that isn't true because there are always cars driving on the road!"

K: "Look there is a gas station right by Nana's house. Why didn't we go to this one?"
M: "We go to the other one because the gas is a lot cheaper."
K: "If we had too much money we would have to look for the most expensive gas station. Then when we paid we would be like, whew I am so glad we got rid of some of our money!"

K: "When we eat chicken how do they make it not move?"
M: (hoping she wasn't asking what I knew she was asking) "What do you mean?"
K: "Like the chicken we eat doesn't look like a normal chicken and it doesn't move. How do they do they get it to not move around our plate?"
(My kid cried when a bug dies...I didn't have the heart to tell her they kill chickens so she can eat them so I took the easy way out)
M: "Uh, hmm. That is a great question. Maybe ask your dad when he gets home from work."

My husband was holding Kaylee and walked by our bathroom mirror
K: "Wow!! That is the first time I have seen my whole body. Look!!"
We don't have a full length mirror and so I guess she hasn't really seen her whole self in oh 5 years or so.

K: (she came into my room in the morning and came to snuggle a bit before starting the day. My husband didn't budge and just happened to be snoring that morning. She was so still I thought she had fallen asleep. Suddenly she popped up, "Wow, daddy sounds just like a cow!!"
She was so right, he sounded identical to a very noisy cow!!

Friday, September 22, 2017

Changing It Up Or Not

With Kaylee in school I have more time to focus on my health and I decided two days a week I will sleep in (until 6:30) and go to the gym after I drop Kaylee off to school. I still do my early mornings (5:20) three days a week because I actually really enjoy the early morning routine, but I know with winter coming I need to ensure I am getting at least 7 hours of sleep a night to fight off those winter germs.

The other benefit to working out later, outside of the sleep, is I wanted to change my workouts a bit in hopes that some variety may be beneficially to my lungs. On my late gym days I use the treadmill and have been attempting to speed walk for 5 min followed by jogging for five minutes. My goal was to work up to jogging the entire workout. I was pleasantly surprised how well my lungs took to the jogging walking combo and was hoping to see improvements in my jogging. (***Can I just throw in a side note here: In May 2014 I was told I could no longer jog due to medical reasons... take that suckers!!!CF can kiss my ass! Moving on...) However, as I jog more and walk less I have noticed some weird twinges in my knee post workout. Workout injuries are my biggest fear because I can't imagine what would happen to my poor lungs if I was injured and unable to workout. And it is so hard to get into a good workout routine and once you stop even for a week or two it can be torture trying to restart.

I am going to buy new running shoes in hopes my old pair was just a little too old to offer the appropriate support. I hope it works! Even though I absolutely adore swimming and I never have any weird aches or injuries from swimming a part of me thinks my lungs have gotten used to swimming and I don't notice as much clearance as I used to. In theory, I could work on my time and try to swim faster to give my lungs that extra boost, but I still need to be careful not to workout too hard or my O2 drops and being in a pool it isn't like wearing oxygen is an option. So I was hoping this small change in routine two days a week could provide the extra clearance I would like.

Friday, September 15, 2017


A little over five years ago you were placed on my chest and we became almost inseparable. We were together 24/7 for most of your early life and your life intertwined with mine so much that figuring out where yours started and mine ended became blurred. Sure, there were weekly dates with your Nana and Papa, and daddy date afternoons, but mostly it was you and me, kid. And I loved nothing more than to spend my days with you.

And then three weeks ago you went to kindergarten.

This new and exciting journey started for you, the world expanding in ways you had no idea was even possible. Your mind opened to new experiences and thoughts and ideas. Your journey of exploring the world, was just beginning and you standing at the cusp of it felt large, and beautiful, miraculous, and overwhelming.

Your first few weeks brought a bit of separation anxiety, mornings of you grabbing me a little bit tighter at drop off, some tears in your eyes, and a large dose of uncertainty at this new expanding world. And every pick up was full of your love for school and declarations of "it wasn't worth the tears." And yet each morning that touch of separation anxiety appeared again, only to be eased the second I disappeared from sight.

But while your world was expanding and growing, mine felt like it was shrinking. My days continued very similar to how they had before. I went to Costco to get groceries. But there was no shouting, "all aboard!" cuing my favorite little girl to hop back on the side of the cart before changing aisles. The absence of chatter was deafening as washed the dishes or folded laundry. There was no little girl helping me pull the freshly washed sheets on my bed. I did my fall baking as I did every year, but there was no miniature chair pulled up to the counter with little feet standing on tip toes and little hands helping me stir. And to be perfectly honest those first few weeks were tougher on me than they were for you.

As we are finishing our third week of school, you're getting used to the routine and feeling less anxious at drop off. And just as you are getting used to your new routine, I am getting used to my new routine as well. I am finding new ways to spend my time and replacing old traditions with new ones. I feel overwhelmingly grateful I was able to spend so much time with you for the first five years of your life. I feel even more grateful I am well enough to watch you take your first real steps of independence into the world. What a magical journey we have been on!

Friday, August 18, 2017

Now vs Then

This week my husband and I had a little get away. We went about an hour and a half Northeast to a historic old town to spend some time in nature just the two of us- child free! I was excited to get a little alone time with my husband before school starts and we thought of it as an early anniversary vacation (we have our 7 year wedding anniversary early next month). My only little concern was that we would 2,500 feet higher in elevation than we currently live (which is essentially sea level) and I was a little concerned with how my lung would handle the elevation. We figured we would give it a shot and if it was a little too high our hiking and nature weekend would end up being a laying around and relaxing weekend.

As my GPS notified us that our hotel was quickly approaching I realized that the car was going up a steep hill. As the car drove higher and higher I started to get worried. We live in a valley so our landscape is as flat as a landscape can be and I just wasn't sure if the hills in this town would make walking a challenge. We heard the town we were visiting wasn't known for good parking and that our best bet was to walk into town for restaurants. Would my lungs be able to handle these steep hills at a higher elevation? I figured there was nothing we could do about it at this point so we hoped for the best.

When we checked into our hotel we realized our room was on the second floor up a very steep and curvy set of stairs. Stairs still give me a touch of anxiety because for a long time I just physically could not climb a flight of stairs. When I was sick for a couple years I would have to climb stairs on all fours because I did not have the lung power to walk them like a normal person. Needless to say stairs bring back bad memories. Again, I was wondering how I was going to make it through this vacation.

All of these secret little fears ended up being fruitless. I handled the hills and the stairs like a champ! Sure, I may have been a little more winded than the normal person, but I also only have 1/3 of the lung function that a normal person has. The entire trip I did not need to stop and rest on the hills or the stairs and we walked a ton of hills! And even more amazing I survived a hike that was a straight downward hill that I would old never have even attempted a few years ago in fear that I would never make it back up the hill. Sure we walked back up the hill very slowly. But my husband was so patient and wouldn't let me get frustrated with how often I needed to rest. He even carried me on his back for a little to give me a rest (although I really didn't need the help it was a nice little rest).

As we were driving back home I couldn't help, but be in awe with my body. I was able to do so much and my CF hardly got in the way of our vacation (those darn treatments are always such a pain on vacation because we can't just get up and go) and I could hardly believe I was the same person I was a few years ago. It also made me realize once again lung function is just a number. I have been hovering in the low 30s for a few years now, but what I am able to do now vs a few years ago is extremely different! I have a feeling consistently swimming has helped condition my lungs and body so that I am able to much more with my little 33(ish)% now than I was even a year ago!

I know this newfound amazement may vanish with the next cold or exacerbation, but for now I am reveling in a body that has dealt with so very much and still seems to power through!