Saturday, March 11, 2017

My Fitbit Is A Liar

The other day I wrote about how my fitbit proved I was a liar. Apparently, my fitbit isn't so honest either.

I was getting ready for bed the other evening and had just finished my treatments. I was going into the kitchen to take all my evening pills when suddenly my fitbit vibrated and I got a notification on my phone that I had completed my workout goal for the week. Perplexed as to how I reached my 5 day goal when I hadn't even worked out that day, I opened my app to find I had apparently rode my bike for 20 minutes that evening. My fitbit mistook the vibrations from my Vest as the movements used while biking.

Although I found this mixup humorous, it did make me think how nice it would be to have an exercise tracker that could also keep track of treatments and medications!

Wednesday, March 8, 2017

Kaylee Chatter Part 4

Kaylee woke me up one morning and I was having such a hard time getting out of bed. Kaylee was standing next to me scolding, "Don't be dramatic, just get up!"

She sometimes confuses or combines words. My current favorite is "disastrophe".

"Was everything, like pictures, only in black and white when you were a kid?" Hey, I am only 32!!

"When the very first baby dinosaur was born who too care of it because it didn't have a mommy?"

Kaylee loves wearing my clothes, my jewelry, my shoes, basically anything that belongs to me she wants to wear. One day she came out in a dress she owns that looks just like one I own plus some of my jewelry, "Abra Cadabra, I am mommy!"

Monday, March 6, 2017

These moments in time

Dear Kaylee,
There are some moments in motherhood that I wish I could freeze time and relive over and over. At this age right now, motherhood is so much less grueling than when you were a baby. Sure, there are still bad moods, and the ever growing "attitude" and moments that can be tough, but the day to day workload of diapering and feeding and rocking and calming two year old tantrums are all a distant memory. I find my moments with you, as a kid, rather than a baby so much more relaxed. I held on to your babyhood so tightly because my love for little baby Kaylee was so strong I couldn't imagine that I could continue to love motherhood as much as I did when you were an infant snuggled in my arms. Oh, but a mothers love doesn't know how to regress, it only grows and grows.

One of my absolute favorite activities to do with you these days is read to you while you keep busy doing art work. When you were three I started reading kid chapter books (Ramona!), but as you got older you became more and more interested in the chapter books I was reading for myself. I joined a book club about a year ago and you often asked for the details of the books we were reading. Your interest in my books continued to grow and I found myself reading excerpts of the book club books I was reading. As long as you found an activity to do while I read, you wanted longer and longer excerpts. Now, you beg me to read my books to you while you busy yourself with crafts. Last Saturday I read almost 100 pages to you in the course of a day. Every time I tried to take a break you would beg me to continue.

Of course, my sweet sensitive child, I need to edit or omit parts because you are only four! You pay attention at times and at other times I know your mind wanders which makes it easier for me to skip over parts, improvise, or "lose" my spot only to pick up again a few pages later. You have rejected bedtime stories in exchange for listening to me read whatever I am currently reading.

This, my dear girl, is the parts of motherhood that make me thankful for the here and now. It is easy to look at old pictures of you when your cheeks were chubby and your hair still held tight curls around the nape of your neck and miss those sweet and tiring baby days. These magical moments are especially amazing because I know we will never have to leave them in the past. These traditions we can continue forever. Eventually, we will swaps roles, you will read chapter books to me! And even when you grow up and move from my home, we can read the same book no matter how close or far you live and we can discuss the books over coffee or, if distance requires, over the phone.

My sweet girl, I feel so very lucky to have you in my life and as each day passes my love for you just grows and grows. Thank you for going on this adventure called life with me and daddy. You bring so much joy to our lives and we can't wait to continue to watch you grow!

Love,
Mom

Thursday, March 2, 2017

You Know You Have A Chronic Disease When

A few days ago I went to the eye doctor to get a new prescription for contacts. I was filling out the forms they give you to fill out while you are waiting for your appointment. Easy enough. And then I got to the line that asks if you are on any medication. IF?? Wait, if? I sometimes forget everyone's life doesn't revolve around their medication schedules.

I quickly checked the yes box and went to the next line to fill in my medication list. The line they provided was 4 inches long. 4 inches!!  How do I fit 12 medications on a 4 inch line? Oh right, most people don't take 12 medications and in fact a lot of people can skip that line entirely!

You know you have a chronic illness when you need extra sheets of paper to staple to the back of your intake paperwork to fit your medication list.

Wednesday, February 22, 2017

Guest Blogger- Kristen

I am so excited to introduce to you another CF mother, Kristen! Kristen has a unique CF story in that she was diagnosed with Cystic Fibrosis at the age of 31. She was already a mother of two children at the time of diagnosis. Six months after her own diagnosis her children were tested positive for Cystic Fibrosis as well. Below is her journey with CF and motherhood.

Like me, you had a late diagnosis compared to most people with CF. Can you explain how you were finally diagnosed with Cystic Fibrosis?

For many years I struggled with GI symptoms, chronic sinus infections and low weight. Doctors were unable to connect pieces until I was 31 and diagnosed with pancreatic insufficiency. After the pancreatic insufficiency results and a borderline sweat test, the pieces were put together.

I am sure getting a CF diagnosis as an adult was life altering. Your children were also diagnosed with CF which I am sure added to the shock. Do you mind sharing a little bit about what it was like receiving three CF diagnoses in one family over a short period of time.  

I was told the chances my children had CF were very slim, due to the genetics of myself and my husband. However, both my children were in fact diagnosed with the disease. It was shocking to say the least, but yet I felt that it immediately encouraged me to stay as positive about my disease because it was my children’s disease as well. And I did not want them to have any negativity associated with CF.

Cystic Fibrosis presents itself so differently in different patients. Can you share your biggest hurtle with CF?

My digestive system. Even with clean eating and digestive enzymes, I struggle with DIOS episodes, lack of absorption, and low body weight. And because of that, I can be weak at times.  I also have chronic pancreatitis which can cause pain many days and my blood sugar to be erratic

What are your children's biggest hurtles when it comes to Cystic Fibrosis?

We are very blessed that at the moment my children are only exhibiting mild CF symptoms. My son is very strong. He runs almost daily to keep lung function up. However, he does struggle with intestinal issues as well. He has had several “back-ups” as they are referred to and needs to be diligent with laxatives and enzymes.

My daughter is very tiny, like myself and struggles with her pancreatic function as well. She is prone to upper respiratory infections. We have had a good 6 months, but the 6 months prior to that, she had several cases of pneumonia.

Being a mother, regardless of health status, can be challenging at times. We all know CF can be extremely demanding and challenging as well. Does CF ever get in the way of the mother you want to be?

YES! There are times I am too sick to go into the schools for this or that for my children. There are times I am too sick to get out of bed and I hate not being present for my children. My own care takes a lot of time and that is time I have to schedule in my day and away from other things.

What advice would you give and adult that is diagnosed with Cystic Fibrosis.

To not let this disease define them. CF will become part of your life, but it does not need to be your whole life or define you negatively.

What advice would you give to a parent whose child recently received a CF diagnosis?

I would tell them to raise their child to be responsible for their disease, but to raise them with HOPE. Allow them to be who they want to be. CF is only one fact about them, it is NOT who they are!

You and I have very similar philosophies when it comes to food: whole foods, healthy sources of fat, and limited junk or processed foods. This kind of eating can be unusual among CF most CF patients who are told to get as much fat as possible regardless of the source. What made you chose this route when deciding what foods to put into your body?

It was as simple as trial and error. The bottom line is that I feel better when I eat clean foods. My weight stays more stable when my fat and calories come from natural sources. When I stray from clean eating, I suffer with pain and weight loss. I also believe that people with CF need to plan to live a long life (we are making strides that is a reality now) and I believe you should protect your heart, etc when caring for your body and meeting your CF needs

Please tell us about your website, http://amindfullmom.com/, where you share tons of amazing recipes.

A Mind “Full” Mom is a place where I share real recipes made from real foods that meet the needs of real families on real budgets. That breaks down to me sharing recipes that are family-approved, easy to pull off and won’t break the bank. I also share ways to be intentional with life and to not let the craziness of this world impact the memories you make with your family. And of course I share encouragement for staying positive when living with a chronic disease.





To read the stories of ten other women with CF and their journeys with CF and pregnancy/motherhood please click here.

If you are a CF mother (though adoption, step children, surrogacy, fostering) or have CF and are pregnant and want to share your story e-mail me at inhalinghopecf(at)gmail.com

Monday, February 20, 2017

Polar Bear Plunge

I missed a few days of workouts because the whole fiasco with missing some Orkambi which made me too short of breath to workout. Friday I decided my lungs felt well enough to get back into my usually workout routine. I set my alarm and found myself checking into the gym early morning. To my dismay the girl working the front desk informed me that the pool was closed for maintenance and apologized for any inconvenience. Sigh, I wished I had decided to sleep in that day instead.

Over the weekend, I called to ensure the pool would be ready for Monday morning as I didn't want another early morning without a workout. The gym staff assured me the pool was up and running. So this morning, I found myself back at the gym and more than ready to get back into my workout routine. As hard as it is to get myself out of bed to go to the pool I never feel myself when I skip and so I really do enjoy my morning workouts. After checking in (and yes the pool was open!) I ran through the heavily falling rain to the pool, sat on the edge to adjust my goggles and dipped my feet into the water. Eeek! The water felt like ice! I went to the heat pump to check the water flow to see if the water being pumped into the pool was warm (it always is at this time in the morning) and it was also coming out as ice.

I wasn't about to miss another workout and so in I went for my very own polar bear plunge (although the mornings have been around 50 so I guess I really can't pretend I am as crazy... err... brave as the people that really do the plunge). I will say that being forced to swim in cold water sure encouraged me to swim a lot faster though!

Here is to hoping tomorrow morning that the pool will be open and the water will actually be warm!

Thursday, February 16, 2017

Restarting Orkambi

Due to issues with my pharmacy I did not receive my January shipment of Orkambi on time. Of course, I was upset that due to issues with my pharmacy and their lack of organization and communication was causing me to miss medicine that is beneficial to my body. But the reason I was most upset is that when I started Orkambi I had a lot of issues with side effects specifically chest tightness and shortness of breath. I was very concerned that restarting my Orkambi would bring back some or all of these side effects.

When I finally received my Orkambi I was so relieved that I wouldn't have to fight Accredo anymore. I momentarily forgot my concern with side effects. I was abruptly reminded of this concern a few hours after taking my morning dose. Although the side effects weren't nearly as intense as when I first started Orkambi I did notice a huge difference in my breathing pretty immediately. I often felt as if someone was sitting on my chest. I also had random sporadic bouts of extreme shortness of breath that seemed to come out of nowhere and disappear just as mysteriously. The biggest issue I had was I was too short of breath to exercise efficiently so I felt like my lungs weren't getting cleared properly by swimming which seems to be my best defense against mucus build up.

The side effects only lasted about fours days and yet after they subsided my lungs felt congested and heavy. I currently feel like I am on the brink of an infection. I will never know 100% if stopping and restarting Orkambi caused this infection, but I do think adjusting off and back on was really stressful to my body. I also think missing/more lax workouts didn't help the mucus build up nor did the tightness caused by restarting Orkambi. I seriously hope that I am never forced to go off of Orkambi again unless a new and improved drug comes out.