Thursday, July 27, 2017

Skinny Summer

With CF you just can't seem to have it all. This has been one of my healthiest summers lung wise in several years and I am so grateful for that! However, life with CF would not be life with CF unless something was a bit off. So despite feeling really good overall (minus a few low energy days), being back in my exercise routine, getting through each day without a nap(!!), I have one little CF issue to work on. For some reason summer is such a hard time for me to keep my weight up!

If you followed my blog you may know that maintaining my weight isn't a huge issue for me (except when it was a huge deal) and I can usually manage to maintain at least 120 pounds. Being 5'4" the doctors start giving me the side eye when I weight in 120lbs, but they don't get too freaked out unless I drop below the 120 threshold. Right now I am sitting right at around 119/120 and I know that I need to be careful not to let it slip and lower.

You know what though? Summer is the time for juicing as much produce as you can gather. Summer is for eating plump red tomatoes right off the vine. Summer is for popping fresh blackberries and blueberries into your mouth on a hot summer afternoons. Summer is for ice cold watermelon poolside. Summer is the time I like eating fresh and light and as much from my garden as I can. But now that I can feel my shorts falling lower on my hips and my scale is slowly disappointing me I know I need to pull out some of my old weight gaining skills and start putting on my winter July

Tuesday, July 25, 2017

Kaylee Chatter Part 6

K soon after turning 5: "I have to go dating now that I am a grown up"
Me: "who are you going on a date with?"
Kay: "My mother and father, of course!! We are going dancing."
Me (internally): "whew"

Kay: "It is more common for people to have freckles on their neck."
Me: "Is it? I never noticed before."
Kay: "Yeah, it is the most legal way to have freckles."
Me: ...

Kay: "Look there is a hiddiup parking spot!"
Me: "What?"
Kay: A hiddiup spot... see"
Me: :Oh yes, that is a handicap parking spot!"

After seeing someone with a crop top:
Kay: "I think those shirts are people with a baby in their belly so their baby can get some fresh air."

My status as the only person in the world she can picture marrying has dropped down a notch:
Kay: "I am going to marry you someday.... unless I find someone better.

Friday, July 21, 2017

Self Doubt

"Why are you so damn lazy?"
"If you just put in some effort you could have been a little more productive."
"You just lack motivation!"

Have any of you with chronic illness heard these words? Worse yet were these words you said to yourself? I am completely guilty of saying these things to myself even though I know they are not justified and absolutely not true. Of all people you would think I would have compassion for my body and for myself on the hard CF days and yet I can find myself filled with self doubt at my very own disease. Can you believe that? I have had CF for 33 years and have progressed drastically in the past four years and I still question myself when it comes to how sick I am.

Today was a rough day. It could be because I didn't sleep enough or because the little sleep I got was spent coughing. It could be that I was really busy this week and I overexerted myself. I will never be sure of the reason, but these days happen every once in a while. I woke up and went to the gym like usual, but when I got home I was utterly exhausted. I felt a little achy and my body hurt all over. All I wanted to do was lay in bed and sleep all day long! I decided to push through with a few cups of coffee and make zucchini bread with Kaylee. Of course, once the bread was in the oven my body revolted. The dishes were thrown in the sink and even the dirty bread pans were left on the stove top. And a little voice in my head reprimanded me for leaving such a mess. When that voice gets going I start to wonder if I am...lazy. I try to reassure myself that people with chronic illness have these days sometimes and that it is okay to take a day to relax, but that seed of doubt has been planted.

Thankfully, my mom had planned to take Kaylee to an art museum for the afternoon and so I was able to indulge in a very long nap. That break was a huge lifesaver and allowed me to have the energy to make dinner, but as I was setting the dishes on the table I noticed that my sink was now overflowing with the morning dishes plus the dinner dishes. I also had an untouched to-do list hanging over my head and the self doubt started to creep in once again. How hard would it be to throw in one load of laundry? Would it really be that hard to put away your shipment of medication that came this afternoon? Are you sitting writing a blog post because you really are too tired to do something more productive around the house or is it more because you don't want to do something more productive around the house.

I just feel such a disconnect from my body/health from my mind/spirit. I feel like I should be able to run around and get everything on my list done...and more! I feel like I should wake up everyday full of life and energy. I feel normal! But my body is not normal and it reminds me on days like this. That disconnect is where those voices come from. The part of me that feels like a normal human being isn't always empathetic of my body that just so happens to be a little bit broken. It is hard to have a body that can be so unpredictable. It is hard to not know what each day will look like energy and health wise. It is hard not to doubt yourself when nobody you know in your age group struggles with these types of issues. I really try to work hard on showing myself compassion and kindness. I know my body works harder than other 33 year old bodies. I know my lungs are in constant war against the bacteria that lives in them. I know I will never be the same as my peer group.

I just sometimes forget.

Wednesday, July 19, 2017

Dog Days Of Summer

Summer is the absolute best time of the year. Long days, a garden bursting with life, and hot afternoons spent splashing in water is pretty much my idea of happiness! Last summer I was tethered to IVs, a week long case of the hives, and then had a minor non-CF related surgery and I felt like my summer slipped by before I could fully enjoy it! I feel hesitant to even write this next line lest I jinx myself, but this summer I have felt really well and I am taking full advantage of enjoying every minute! In all the excitement of summer I wanted to update a few milestones my daughter hit this summer.

My parents live two towns over and we spend most Sunday afternoons in their pool. Kaylee, always a cautious child, has had no desire to swim without her puddle jumper and insists that she will never go under water- ever! She may be telling the truth about never going under water. Back in my high school days I was a swim teacher and I have reserved a few afternoons these past weeks teaching Kaylee to swim, but she has always insisted that I never ever let go of her. I knew she would eventually find her courage and always respected her desire to feel safe in my arms.

Last Sunday, out of the blue she insisted she was ready to try swimming solo and told me she would push off the step and swim to me. When this kid puts her mind to something she really gets determined. Needless to say, she was successful! Even though she didn't get very far distance wise, she was able to swim independently for a short distance. Of course, I am proud of her for learning to swim, but I am more proud of her confidence in herself and overcoming her fear. After she was successful the first time she wanted to keep practicing over and over. She must have pushed off that step and swam to my arms four dozen times. It was very reminiscent of when Kaylee learned to walk. One day she held my hands and refused to do anything, but practice walking until she mastered it. She can be one determines little kid.

The other milestone she hit was a little less huge as far as milestones, but it is a quintessential childhood summer right of passage. Kaylee officially learned to skip rocks on water. She has been trying all summer, but the rocks always plunk down heavily straight to the bottom of the lake/river. Yesterday we spend the entire day at one of our favorite lakes and she finally mastered the technique to make rocks skip across the water.

We only have 6 weeks left until Kaylee officially starts school and I am trying to squeeze in as much fun and as much quality time with Kaylee as we can! I hope you are all enjoying a summer of good health and fun memories in the sun as well!

Wednesday, July 12, 2017

Motherhood, Yoga, and Transplant

When I stared my blog six years ago I was hoping to meet and connect with other women who wanted to experience parenthood. At the time I didn't know any other CF women that had children and was hoping to make a community for women who wanted to become mothers (whether through conceiving, adopting, surrogacy, or even step parenting). As the years went by I met so many amazingly strong cysters who found their way to motherhood and each story is unique and beautiful. The CF community is such an inspiring and absolutely heartbreaking community to be a part of.

Once in a while someone's story touches you in such a way that it brings tears to your eyes and fills you with a type of understanding that can't be found outside of the CF community. I recently learned the story of Selwa Mitchell through her video made by fotolanthropy. Her story is raw and real and highlights the horrors of CF while also serving as a beacon of hope for those who are in the depths of end stage lung disease. Selwa is a mother of two who has experienced CF at it's harshest, but found refuge in yoga and was eventually given a second chance through a lung transplant.

Please take a moment and check out this beautiful video (you may need a tissue...)

Sunday, July 9, 2017

Hello Early Morning

Since I know you have been here before:

It is the first morning of getting back into my gym routine.
Alarm rings.
Is it the middle of the night? No? Shit, it is my gym day.
Push snooze
Alarm rings
Push snooze
Alarm rings
Turn alarm off and sit up. Debate laying back down to sleep just a little longer. Fight the urge and get up. Get bathing suit on and drink a glass of milk.
Think of a million reasons why the gym can wait until tomorrow.
Fight those negative thoughts, grab gym bag and walk out the door.
Realize it feels chilly and debate turning back and going inside. Who wants to swim when it is chilly?
Drive to gym. Turn off car and procrastinate a few seconds and worry you may be an utter failure at the gym and humiliate yourself by being incredibly out of shape.
Ignore the negativity and go inside.
See the usual girl at the front desk and feel a sense of relief because the familiarity of the old routine is setting in.
Go to the locker room to find the smile of a woman that always swims before you. "The water is great today."
Stand at the edge of the pool, jump in and start swimming. It feels familiar and, dare I say, nice?
Do 10 laps and feel an unfamiliar ache in your triceps and realize your still 60 laps from doing your usual workout. Have a quick moment of panic.
Realize your arms are tired before your lungs and feel pure joy! Get a second wind and swim on.
Realize you won't get your full 70 laps in and allow yourself to settle for 50.
Hope in the shower and feel like a bad ass for going to the gym and not dying.
Spend the rest of the day feeling proud and exhausted.

Rinse and repeat everyday... for the rest of your life.

Tuesday, July 4, 2017

Returning To The Pool

The pool is open! The pool is open!! The pool is open!!!

Can you tell I am excited. If you remember in April (holy crap, it was that long ago?) my gym closed their pool due to plumbing issues and then decided since the pool was out of commission they would refinish it (which it desperately needed).

Well, after seriously way too long they are finally open again tomorrow morning! So guess where I will be? Trying to see if I can pull myself out of bed at 5:20 again (eek) an attempt to swim again. I am actually super excited to be back at the pool every morning. I tried to still work out without the pool, but nothing gives my lungs a work out like swimming and it was really hard to stay consistent with exercise that I just didn't like.

Now I need to dust off my fitbit flex 2 (which just depressed me when the pool was closed) and see what these old lungs can do...

Sunday, July 2, 2017

Life At The Moment

I opened my fridge and realized this shelf perfectly capture my life in summertime. It also represents the my absolute favorite and least favorite aspects of summer.

A fridge full of meds, produce from the garden (plums, blackberries, cucumbers, tomatoes and green beans), and sausages for barbecuing at the beach.