Disappointments and Realizations

I've been putting off this post for a couple weeks, I've known I've needed to share it, but I've also known I haven't wanted to and I've been far too emotional about it to write with a clear head.  Ive had an interesting couple of months.  I've set goals for myself that we're far out of my reach, and would push me nearly to my breaking point.

This goal in particular started when I saw a picture of a friend of mine on her facebook. It was a picture of her running on the beach. The amazing thing about this picture is that it was taken about 5 months post double lung/heart transplant. Seeing this made my heart full. I remember looking at it and thinking, I want to do that. As I had this thought many others entered. I wondered if I would have to wait for the time of transplant to be able to do this. Then I became inspired. Its difficult to know Sharlie and not be inspired. I decided then and there that I was going to get every last bit of life out of these lungs that I could. I was going to make them work harder than they have and I was going to see just how far we, my lungs and I could go together. (a little dramatic right?)

Shortly after, I decided to start running, I decided I wanted do a 5k in St. George in Nov. I was sure I would never run the whole time but wanted to say that I did it.

It took a stroller, a big tank of oxygen cranked to 8 liters and a lot of determination to get started. I looked ridiculous pushing that oxygen around, but hey you gotta do what you gotta do. I remember the first morning, I would walk for 3 min and then run for 1. That first min run was one of the longest of my life. I literally thought I was going to die. When all was said and done I think I walked/ran about 1.5 miles . The second day was similar, but as I checked my oxygen and heart rate I realized my heart rate was about 212 bpm. Not good! I was so frustrated. I remember going in and talking to Ben, nearly in tears sharing my dismay with him. I wondered if it was even physically possible for me to run. He gave me encouraging words and told me not to work too hard. I decided I needed to pray about it. I know it may seem silly to pray about running, does the lord really care if I run? Probably not, but he does care that it means a lot to me and he will lead me to what I should be doing. In that I have no doubt.

After praying and contemplating this matter for a while I remembered a talk I heard by Elaine S. Dalton. She talked about when she first started running she would walk a step and run a step and continued this until she was running more and more. I decided to try it and felt peace that this was a good way to go. It went really well and instead of boring you with all the details, I got to the point in a matter of weeks that I ran 1/2 a mile continuous without stopping, about 7 min. I couldn't believe it. I was so excited and had hope that I really could obtain my goal. Each day I was decreasing my time or Increasing my distance. I got up to 2.6 miles, running probably 1/2 of that intermittently. It felt good. Then a little over a month ago I was running/walking on the treadmill and I felt different. I couldn't run for nearly as long at a time and I had to stop quite a bit. I felt very short of breath. I was worried. That Sunday I walked up some stairs, got very short of breath and had quite a bit of pain. The best explanation I have is it felt like I had a weight on my chest and when I would breath deep the pain increased. I tried to take it easy that week, the pain eased but never completely went away. I then had a drs appointment. Typically I can tell if I'm going to need to go into the hospital. I definitely thought my numbers would be down but felt pretty good overall.

Every visit before I see the Dr. I do what is called a Pulmonary Function Test (PFT). This tests a lot of different things in my lungs, the main thing they look at is the FEV1. Basically, how much air I'm able to blow out in the first second. This determines how much infection is in my lungs. I got done with the first round ( we have to do it at least 3 times) I was anxiously awaiting the numbers to pop up on the screen. It takes a few seconds. When I saw them, shocked is the only way to describe my reaction. I looked at Ben and could see the shock on his face as well. My numbers were the lowest they had been in years, yet i was probably working harder than I ever had (i.e. exercise, treatments etc.) Two more tries brought similar results. Ben and I walked to the elevator and I couldn't even talk to him. If I did I would start crying. I was angry, sad, frustrated, and frankly scared. I don't admit that very often or very easily.

We talked with the Dr. about my running. We wondered if it had something to do with my low numbers. He told me to scale it back a notch and come back in a month to see where I was at. That night and the next day were very emotional for me. My hopes of being able to run we're shattered. I felt defeated. Here I had worked so hard and had wanted it so bad.

Logically when I think about running and needing 8 liters of oxygen I wonder why on earth I am doing this? It seems pretty ridiculous. I think the biggest problem is its just one more thing on the list of things that CF holds me back from and having to deal with that realization is never easy for me, big or small. Whenever someone tells me I can't do something I go into immediate "you wanna bet" mode. So to have my body tell me I can't do something it just makes me want to work that much harder. But at this point I fear I'd be doing more harm than good just to prove a point.

Two weeks after that appt. I called the docs and told them I knew it was time to come in. I have actually ran a little in pulmonary rehab, at the hospital they monitor me. I think we have come up with a good plan. No more than 2 minutes running consecutively and at least 2 minutes walking in between.

I'm still not quite sure the why. Meaning, why this is such a big deal to me. I guess I still have a hard time dealing with the limitations caused by Cystic Fibrosis and given my best efforts my lungs are not ultimately in my control. Of all the pills I've had to swallow, this has always been the hardest.

First Day of School

School has been in full swing for 2 weeks and I am a complete slacker on my blog. I have so many things to catch up on, but didn't want to skip this. Hopefully I'll get back to posting about our fantastic summer later.

My beautiful girl started 3rd grade. I can't believe how grown up she is. I think I cried a little for two days before school even started. I hate change, I always have. We had a pretty good gig going this summer, her, I and, Lawson. Cambree was the most helpful girl. She played with her brother everyday and helped me out so much. One day while I was exercising downstairs and she was watching him she called me and said, "mom, I'm going to give Lawson a bath is that ok?"
Ok? Holy cow, why had I not realized her abilities earlier in the summer?

There were 2 things Cambree was most excited for: 1- she got bangs, she has even sang many a songs about her newfound hairstyle. 2- getting glasses, which she actually just received thurs. and she absolutely loves them.

The first day of school Cambree was nervous, she had talked to a lot of friends her age and most of them were in the the other 3rd grade class. There was one friend that Cambree was super close to that she hadn't had a chance to ask. She was holding out hope that she would be in her class. As I walked with her to the doors we saw lists of classes posted. We both searched for her friends name. I finally saw it listed below the other teacher and my heart sank. I showed Cambree and I watched my brave little girl hold back the tears. I was so sad for her, I too was fighting back tears. I hugged her good bye, went back to my car, and let the water gates open. I think I rayed for her all the way home hoping she would have a good experience. As she barreled through the door that afternoon there was nothing but excitement in her voice. I was so relieved and do grateful.

I have found over the years that one of the many gifts my daughter has is the ability to make friends with anyone and everyone, and more importantly to be a good friend. I love this about her. I'm looking forward to an exciting year of learning and growth for her.