What motivates me?

I have been asked multiple times how I stay on track and compliant. What is my biggest motivation? How do I talk myself into doing the breathing treatments and workouts? What gets me going everyday? So I have decided to take those questions and use them to fuel a post.

As many of you know, I have really struggled with being compliant with my treatments in the past. It has truly been one of my biggest obstacles when it comes to taking care of myself. I always hated them as I was growing up... so much so that when I moved away for college, I pretty much stopped doing them altogether. That took a huge toll on me. It hurt my lungs and lung function, but it also made it that much easier for me to talk myself out of doing treatments. It has been quite the uphill battle ever since.

I started trying to be 100% compliant on multiple occasions only to fail after 20, 30, or 50 days. When I set my resolution this year to be 100% compliant in 2014, I knew this attempt would be different. I was going to be successful, and so far, I have been. I am on day 254, which means that I have not missed a treatment since before January 1, 2014.

So what was the difference this time? People have always told me that you have to work towards your goals for yourself or it won't work. If you don't do it for yourself, you will never be able to maintain your goals. The problem was that this never seemed to work for me. For some reason, thinking of myself just really was not enough motivation for me to stay compliant with something that I really hate doing. I had to change my thinking to make this work.

I changed my approach. I started thinking about the people I love that would be affected by my health declining. I thought of my husband, my parents, my sister, my in-laws, and all of my friends who support me in every attempt I make at keeping my health up. I have seen so many people deal with the loss of a loved one, and I just couldn't bare the thought of causing that pain because of not trying.

I thought about the idea of starting a family in the future be that biologically or through adoption. For both of those to be a possibility, I have to be healthy. If I were to become a mom, I would definitely want to make sure to stick around as long as possible, and I can only do that by taking care of myself.

Thinking about others is how I got over the initial hump of being compliant. I struggled ever day to make myself get up early and do my morning treatments. I came home from a long day of teaching and made myself do that evening treatments. I had to remind myself daily why I was doing this. Who was I fighting for? Why was it so important? Why did I want to be miserable doing treatments?

After awhile, it started to take a turn... I have started doing it more for myself. I feel better than I have in a long time. A couple of weeks ago, I didn't get my morning treatment in until 11:00 am due to lack of time that morning when I had been used to getting it done at 5:00 am. I was blown away by the difference it made. I felt more congested and tired when I didn't get that treatment in first thing in the morning. These treatments open my lungs and get me ready for the day. I don't want to skip them anymore. (Of course, there are still days where I really struggle making myself start the treatment, but I am always glad I did it.) I still don't enjoy the time I spend doing my treatments, but I love the outcome.

Once I got the treatments under control, I really began focusing on the workout part of staying healthy. I began working with my trainer at the end of June. It was much easier motivating myself to go to the gym to kick some butt each time. I really enjoy working out, and I enjoy the results even more! Of course, it doesn't hurt that my trainer is great at motivating me to keep going even when I feel my lungs are closing up on me.

The key to becoming successful is to really find out what will motivate you, and take it one day at a time. It does eventually get easier. I still have to tell myself why I'm doing it, but it is not as hard to make myself start each treatment. The results of being compliant and working out are undeniable. In May, my FEV1 was 43%. In August, it was up to 47%! That in itself, is huge motivation to keep it up!

A Healing Summer

It has been over two months since I last posted on here. As most of you know, I started kicking my breathing treatments into high gear. I began doing double doses of hypertonic saline, and I started to notice a difference. I was coughing less, and I was just feeling better overall. As exciting as that was, I was still not in the most positive place.

I like to stay optimistic about my CF, and I do everything in my power to not let it hold me back from anything. The issue stemmed from the pattern that I had been seeing in my lung function. It has always bounced around quite a bit, but over time, the general movement has been in the downward direction. It has been getting more and more difficult for me to get it back up after being sick, and when it does start going back up, it is very slow going. I was at a loss for what to do. I was not ready to give up of course... I'm way too stubborn for that. I knew I needed to do more than just the extra breathing treatments and staying compliant (Today is day 221!).

On June 26, I started working with a trainer. I went to him with some goals that he is probably not all that used to hearing. Not only do I want to see a rise in my lung function, but I want to gain a little weight to please my doctors. He took on my challenge and has been creating a program specifically suited for my goals and physical limitations. Since beginning my training, I have been feeling great! I'm getting stronger, and could even tell a difference in my lungs when we played baseball and football during our trip to Iowa a couple of weeks ago.

I won't know officially the difference it is making in my lungs until my clinic appointment on August 27, but I did invest in a little PFT monitor that I can use to check my lung function at home. While I don't know how closely it correlates with the machine that is used at the doctor's office, I have been seeing some positive changes in my numbers. When I first purchased the monitor in June, I blew a 42.2%. Last week, my result was 44.7%!! Again, I don't know what my numbers will look like with the actual machine used at my clinic appointment, but this does show that my numbers are improving! I could not be more excited!

This summer has been so great for my health and for my emotional well-being. It has given me time to refocus on my health, and I am extremely dedicated to becoming the healthiest and happiest me!

I admit defeat!

If you know me at all, you know that I can be very stubborn when it comes to just about anything. If you have been following my story lately, you are aware that I have been working on being 100% compliant with my breathing treatments in 2014. (I am now on day 154!) I have been doing all of my treatments, but it has come to my attention that I have not been doing everything in my power to better my health.

At first, I was completely satisfied with maintaining my lung function through the school year without getting the flu. In fact, I was pretty ecstatic. I was spending the first few months of 2014 feeling pretty good, but as the school year wound down, I started to feel a little under the weather. It continued to escalate through the month of my coming to a climax for my clinic appointment last Wednesday. I was feeling terrible with my nose completely congested and my cough remaining pretty constant and wet. I knew going into the appointment that my lung function would be down. Sure enough, it had gone down from 46% to 43%. My doctor wasn't extremely worried. In fact, she told me that she believed it would have been a lot worse if I hadn't been compliant with my treatments this year. That was good to hear, but I was still not feeling great. She wrote me a prescription for antibiotics (Vyvox which is used to treat the MRSA that I have in my lungs). I went home with a lot of mixed feelings. I was proud that I kept my lungs as healthy as I had, but I felt defeated because even with all of my hard work, my lung function dropped.

It was the next day that I saw a Facebook post from one of my friends and fellow CFers about his FEV1 numbers. He talked about being frustrated when he felt that his numbers weren't going up and what he did to change that. He had been doubling up on his hypertonic saline (treatment of an inhaled saline solution that causes the lungs to be irritated in order to help move mucus up and out of the lungs). Now, you have to realize that I have always been told to add in extra treatments when you are feeling bad, but it was something that I did not do very much of. Adding treatments meant taking more time out of my day to do something I really hated. This was the first time I had heard someone say they do extra treatments even when they aren't feeling bad.

As I read about the difference it was making in his life and in his lung function, I realized that I hadn't been doing everything in my power to make myself healthy. I decided that day to step it up. I'm still only doing two treatments a day, but I have amped them up quite a bit. Instead of just doing one hypertonic saline vial in the morning and one at night, I'm doubling it up! I do two in the morning and two at night. I have also increased the time I spend doing my vest (used for airway clearance). I went from doing that for twenty minutes to thirty minutes twice a day. Every morning and every night, I am now spending thirty minutes wearing my vest and breathing in my hypertonic saline.

I'm now on the sixth day of this new routine, and as much as I hate to say it, I can see a huge difference. Ha! I have never been one that wants to put in extra time to fight my CF, but it really does work. It's been miserable, and I really pretty much hate every minute of the intense coughing, but there is no doubt in my mind that if I did a PFT right now, my numbers would be closer to where they were three months ago. So, now when I say I'm being 100% compliant, I am really doing more than 100%! I am putting every effort into feeling my best!

Now that I am finally feeling better, I am going to be kicking the exercise back into high gear as well! Summer break is going to be good for me, and I'm hoping that I will see the benefits when I have my next clinic appointment at the end of August!

So, there you have it. One of the most stubborn people in the world has completely admitted defeat and given in to doing something she didn't want to. :) It's all for the greater good! I just have to remind myself each time I sit down to do my treatment that it really is making a difference, and I am just going to feel better after each one. I have to give myself a little pep talk every time, but I know I can do this! Here's to double hypertonic saline!! Here's to feeling better and doing everything it takes to reach your goals!

Day 4 and 5... Parents and Great Strides

In honor of day 4 and 5 of Cystic Fibrosis Awareness Month, I thought I would share a little more about my parents and how I got started participating in Great Strides. Let me begin by saying that I will be expressing my opinions on how my parents raised me, and that may differ from others' views on parenting children who have cystic fibrosis.

As I mentioned in yesterday's post, I was not diagnosed with cystic fibrosis until I was 6 years old. I attribute that delay to the level of activity I participated in as a child. I was always bouncing, running, jumping, or flipping. It was rare to see me sitting still or just hanging out inside. Because of that, I really only showed signs of CF with digestive issues. My parents took me to multiple pediatricians trying to figure out what was wrong with me. The doctors assured my mom repeatedly that she was just an overly concerned parent and that I was just a sickly child. Thankfully, my mom would not accept that as an explanation for her child having so many issues. She stood up as my advocate and would not rest until she had an actual answer. The third pediatrician she took me to went through a lot of possibilities that could explain what was going on. Mom has told me that when he mentioned cystic fibrosis, and she did some research on it, she knew that was it. The doctor was not as sure though, but he decided to have a sweat test performed anyways. Sure enough, it came back positive.

 I cannot even imagine how my parents felt the day they received the news that I had a life threatening disease. How do you even begin to grasp the fact that your child's normal life just got turned upside down? How do you learn to accept the realities of your child having something as serious as cystic fibrosis? Not only was I diagnosed with CF, but my sister was also born with a serious heart defect. She is missing her right ventricle! When she was 3 years old (close to the time of my diagnosis), she had to have open-heart surgery. You always hear stories of people just shutting down after receiving bad news, but I am so grateful that my parents did the opposite. They took all of that terrible news and our scary health issues and chose to fight with everything they had.

That's when we got involved with Great Strides. We began that first year raising money to help fund a cure, and we have never missed a year. I used to go door to door in my neighborhood asking for contributions, and while I don't go around my neighborhood anymore, I do ask all of my family and friends for help.

While my parents worked extremely hard to raise money to find a cure for cystic fibrosis, they also did everything they could to make sure I lived as normal a life as possible. I was never put in a bubble. I played outside with my friends constantly, and it was a fight just to get me to come back inside. They made sure I did my treatments and took my medications, but they always encouraged me to stay physically active. I took tumbling, dance, and went to cheerleading camp as a child. When I decided that I wanted to be a cheerleader in middle school, my parents supported me fully.

I can't brag on my parents enough, because I am blessed beyond belief to have parents who back me up in everything I do and who encourage me to make the right decisions for my health. They were strong when many people would have thrown in the towel. They instilled in me the morals and work ethic that I apply in my everyday life. They have modeled for me what it looks like to be successful individuals who never give up even when things seem to grim to bare. I cannot thank them enough for everything they do.

Diagnosis and Childhood

I'm way behind, because it's day 6 of Cystic Fibrosis Awareness Month, and I have only posted once. So, I'm going to play catch up just a little bit and post for day 2 and 3. From the moment I could crawl, I was always active. I had one of those bouncy seats that hangs in doorways, and according to my parents, I was constantly jumping in it. Due to all of the exercise early on, my lungs really did not show the major symptoms of cystic fibrosis. My big issues showed up in the form of digestive issues due to my pancreas malfunctioning thanks to CF. I was born before it became the norm to screen newborns for the disease, so I slipped through the cracks when it came to receiving a diagnosis. My mom argued with multiple pediatricians about my health. She went through two that both told her she was just overly concerned and that I was just a sickly child. Finally, she got the third pediatrician to really put some thought into what was going on with me. He went out on a limb and decided to test me for cystic fibrosis even though he was confident that was not what I had. So, at the age of 6 years old, I was diagnosed with cystic fibrosis after going through a sweat test which is the procedure that is used to determine if a patient has CF.

I mentioned that I had digestive issues as a child, and I just remember excruciating pain dealing with those issues. When I look back at pictures of me as a kid before my diagnosis, I looked malnourished. I had the thin limbs with the distended belly due to my body being unable to digest the food that I was eating. I am so thankful for that pediatrician that actually listened to my mom and tested for cystic fibrosis.

Once I received my diagnosis, life changed pretty dramatically. We started going to a specialist for my disease, and I had to begin taking new medications and doing breathing treatments. I continued staying active, and thankfully, my parents chose not to put me in a bubble because of CF. I was always outside playing with the neighborhood kids, and it was like pulling teeth trying to get me to come inside at night. I struggled with the fact that I had to go inside earlier than my friends, because I had to fit in a breathing treatment before bed.

In elementary school, I was not embarrassed by cystic fibrosis, because it really didn't matter what people thought about me. I didn't let it effect what I was doing or who I was friends with. The biggest problem I had with it was that I had to go to the office everyday to get my digestive enzymes before lunch. That was always an inconvenience to me.

My childhood was great minus the hassles that cystic fibrosis presented. My parents allowed me to live my life as close to "normal" as possible. My family hit the ground running after I received my diagnosis. They knew they had to do everything in their power to fight this disease. We began raising money and participating in Great Strides that year. We have been doing the same thing every year since then. This year will be my 20th year with Great Strides! I plan on doing everything I can to fight the disease for not only me, but for every person who is struggling with it.

To make a contribution to the Cystic Fibrosis Foundation, just click on the picture below. :)

Day 1: What is cystic fibrosis?

Today is the first day of Cystic Fibrosis Awareness Month, and what better way to celebrate than to have a different post about CF everyday in May! So, for Day 1, what is cystic fibrosis? If you go to cff.org, you will find a ton of resources about cystic fibrosis. This information comes straight from that site.

Cystic fibrosis (CF) is a life-threatening genetic disease that primarily affects the lungs and digestive system. An estimated 30,000 children and adults in the United States (70,000 worldwide) have CF.

Quick Facts about CF In the United States: About 1,000 new cases of CF are diagnosed each year. More than 75 percent of people with CF are diagnosed by age 2. Nearly half of the CF population is age 18 or older.

In people with CF, a defective gene and its protein product cause the body to produce unusually thick, sticky mucus that:

• Clogs the lungs and leads to life-threatening lung infections.
• Obstructs the pancreas and stops natural enzymes from helping the body break down food and absorb vital nutrients.

In the 1950s, few children with CF lived to attend elementary school. Since then, tremendous progress in understanding and treating CF has led to dramatic improvements in the length and quality of life for those with CF. Many people with the disease can now expect to live into their 30s, 40s and beyond.

Symptoms of CF

People with CF can have a variety of symptoms, including:

• Very salty-tasting skin
• Persistent coughing, at times with phlegm
• Frequent lung infections
• Wheezing or shortness of breath
• Poor growth and slow weight gain, in spite of a good appetite
• Frequent greasy, bulky stools or difficulty in bowel movements

It wouldn't be CF Awareness without me asking for a donation. Please help us continue to add tomorrows. Donate here: cffh.convio.net/goto/kaylaskrusaders

Does it get any easier?

Those of you who have been following my story know that being compliant with breathing treatments has been a huge struggle for me. Breathing treatments were a source of bitterness and frustration beginning in high school that has continued through my young adulthood. When I got the opportunity to go off to college and gain my independence, I chose to use that freedom to skip out on most of my breathing treatments. If you haven't read about the consequences of those decisions, you can do so here.

After the wake-up call that was the lung transplant scare, I decided that it was time to turn my life and my health care around. I had every intention to do so, but I still struggled with staying compliant with my treatments. My lung function has fluctuated since that 59% in 2010. I have made the goal to be 100% compliant multiple times now, and I wish I could say they were extremely successful. The problem is that I stick to it for a little while, and I always fizzle after awhile.

I vowed that 2014 would be different, and so far, it has been! My new year's resolution was to be 100% compliant this year. It has now officially been my longest stretch of compliance since high school! I'm on day 118, and I am so proud of myself. Going back to the title of this post, it really does get easier. I have gotten into the habit of doing my treatments. I even throw in extra treatments when I'm not feeling well which is a huge deal when it comes to me. There was a time when I would have never even considered doing an extra treatment voluntarily!

Even though it is getting easier to stick to my treatment compliance, I still dream of the day when those of us fighting cystic fibrosis don't have to deal with breathing treatments and other medications daily. Help me make that dream a reality and add tomorrows for cystic fibrosis patients! Just click on the link, and make a contribution. I cannot stress enough that there is no amount that is too small! Every little bit adds up! Please help!

I have a lot of work to do before I reach my goal of $8,000. I can only do it if you help! Thank you all for your continued love and support!