Wednesday, July 2, 2014
This is now how I look at life:
Before transplant, while I watched and felt myself fall farther into the end stage of cystic fibrosis, I was a sad and very exhausted person. I woke up everyday in order to take care of my family and fight for another day to live. I went to bed hoping the next day would be a little better and maybe I could squeeze in a few tasks that day. I was out of oxygen. I was tired. I fought hard and my job was to eat, take my meds, and breathe using only the 20% of my lungs that worked. I didn't take care of my house, husband or child very well. I held much of my thoughts and sickness close to me, not letting too many people really know how or what I was feeling both mentally and physically. Yes, I let people in to know some of it. Heck, pretty much this whole blog is all about it. But I didn't tell the whole truth. My lungs hurt. My body hurt. My emotions hurt.
I wasn't living.
I was dying.
I just didn't really get it...until now.
I am just grateful that at the time I didn't really know how bad I was. I am just so thankful that I didn't mull over it too much and just did what I had to do when I had to do it. I am glad I was stubborn and that didn't realize death was just a few steps away. I am glad my body was stubborn and wouldn't quit. It scares me when I think about it now. It scares me to know that in a very big reality, right now at this moment I would probably be dead. It smacks me in the face, hard. Dead. Leaving so many things undone. You all know that I was afraid to leave Laila motherless (and c'mon who would comb her hair, Jeremy would have just cut those beautiful curls.) Nobody would be here to fold Jeremys socks or flip his omelette. Not that I ever thought I, as in ME, was important in their lives, but the person I was was important.
But that was then and this is now.
I can live now. I can breathe and get oxygen now. Do you hear that sound?! Me either, I am breathing and don't hear all the crackles, wheezing, and gurgling in every breath. I don't hear the oxygen machine pumping air in the next room. I can sleep flat on my back or any side, or my stomach...whatever I want (although I still use two pillows most night because my body is so used to being in that position.) I can run around all day and not be exhausted. And when I am tired, its not because I am not getting oxygen, it is because I am out of shape. I can walk on the treadmill for a long time on a good speed and when I am finished I can walk off and continue on my day. I am enjoying exercise.
I don't have to constantly have to worry about dying. I play with Laila, do crafts with her, take her places, run with her, laugh, dance, be a jolly kid myself. I am healthy and healing and life is a miracle. I look at things different. Why fight with people or let the little things they do bother me so much? I am living. Stop and smell the flowers, enjoy the sunshine, make rolls with dinner, people watch, help and smile at people. I am thrilled to be here enjoying this rainy day in Hartford.
I wake up and the first thing I do is take sanitize my hands, check my temp and blood pressure, use my inhaler, check my lung function on my spiro, do my ONE neb, pop my pills and go do whatever it is until my cell phone alarms to take my next round of meds. 8, 12, 4, and 8 are my times to make sure Fran and Shannon stay happy in their new home. I don't count pills with every pop anymore. I smile when I have to chew my tums. I drink a glass of water to flush everything out of my body and keep it clean. Yes, this transplant will forever rule my life, as much as my CF does. The difference being that this transplant saved my life from this nasty disease which was killing me a little more everyday. CF consumed my life in a totally different way. I get lab work done at least once a month, I listen to my body (seeing as it has only been 7...almost 8...months since my life changed) and try to rest. Life is just better when you can live.
I am not dying.
I am living.
I get that now.