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?

Saturday, October 28, 2017

Medication Rules

Anyone else feel like trying to take oral antibiotics the right way is somewhat of a puzzle? You would think popping a pill two times a day is easy, but of course they have to add all these "rules" that complicate everything! And at my age if I am going to take an antibiotic I am going to take the damn thing right because I am not messing around when it comes to CF.

My current antibiotic rules per my pill bottle:

"Take this medication 2 hours before or 6 hours after meals, antacids, vitamins/minerals."
"Do not take with dairy"

Before I head to the gym I usually drink a glass of milk, but since I can't take cipro with dairy or 6 (Yes, six) hours after eating I figured this is the best time to fit in my antibiotic. So my pre-gym routine is currently (and temporarily) a glass of water, cipro, and minocycline. Easy enough! By the time I work out, shower, dress, and do treatments I am around the two hour mark.

The evening dose is a little trickier. I take an antacid in the evening (I know you are supposed to take it in the morning. Long story, but basically I do it all wrong so don't be like me). Antacids and cipro don't mix. Fair enough. I also take Orkambi in the evening which needs to be taken with fatty food. Oh wait, Cipro can't be in that mix either. So I had the perfect plan. Eat dinner, six hours later take my antibiotics. Set my alarm for 2 hours and go to bed. I had my Orkambi, enzymes, my night meds and some string cheese sitting next to a glass of water next to my bed waiting for my alarm to go off. Great idea, right?

Except in the morning I woke up to realize I must have never actually set the alarm because there everything sat untouched next to my bed. Sigh! I am frustrated with myself because I was up coughing at one point and I wish I would have been coherent enough to see my meds next to the bed. So I got my antibiotics in, but missed everything else last night!

And before I sound like a spoiled brat, I do realize this puzzling oral antibiotic schedule is a piece of cake compared to IV schedules or hospital stays and I am grateful that I am able to do oral antibiotics (and I super hope it works this time)!

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!!