Wednesday, June 18, 2014
I am back! That was no fun being sick. But here I am 7 months to the day that I had this my miracle and I am back to my base line, PLUS!
I had a doctors appointment today and got to see how my bling is working in its new world. And they are just blowing out so much glitter (now when I think of this glitter I think of it as that super fine glitter that is so beautiful that you just can't stop staring at it!) Blowing out like glittery glitter! My lung function FEV1 is now at 114%.
*RUBS EYES TO MAKE SURE I READ THAT NUMBER CORRECTLY*
Yes, I typed and read that right, 114%!!! Tears just thinking about this right now. 7 months ago I was praying to just make it as long as I could, hoping the transplant would come before my death did; and now my lung function is better than most of yours. And I know that was gloating a tad bit, and no, honestly, I am not too sorry about that. My lungs have always been so cruddy that I am going to take this feeling good, sucking in oxygen and blowing out glitter thing to the next level. I will gloat and not be ashamed. Proof that my miracle came with a side of miracle. First, I get lungs and its a success. But then to add the miracle of doing so well, so easily, and so soon. I fought to get to this point. I am here and I am proud.
I now get to go in every 3 months because I am doing so well. Its almost a normal thing! My appointments have been going so well, and I still am not used to seeing good numbers and hearing good news. I have a great team behind me in Madison, and am grateful for them over and over.
My weight is up to a good solid 106. I have muscle instead of twigs. I have curves where I did know I could grow them. I am becoming a true survivor with such a sweet story, and one that I could and will tell over and over again. I love my story and journey, even the hard parts that made me who I am. I love it. I love lungs.
I am now able to do things like walk a few blocks away with my daughter and friends to get some ice cream, and walk back without having to stop, cough, or rest for the rest of the week because I did that. I don't have to pick a shower or Laila's bath for the day. I can do dishes every night. I can start to take pictures again, and even have a small job. I can write with pep in my type because I am not afraid to die and leave Laila motherless, Jeremy wifeless, or my family without their family member. I am "normal."
I am not going to say this is all sunshine and roses. Because like I said over and over again...this is a journey. I know that my story is a fairytale type story. One that I prayed for just as often as I prayed for the lungs themselves. A way to be this "normal" for everyone including myself. But, I do get frustrated. I take hand fulls of pills that change often . I get poked like a pin cushion. I run to Madison or call Madison with every sniffle. I hear a person cough and I cringe with the thought I could catch what they have. I check my blood sugar 4 times a day, then count carbs with every bite and take insulin at least 4 or 5 times. I shake, and shake, and shake. I started to loose some hair. I am sterioded up, and even though I am able to control it a bit better, I feel that extra pulse of energy come out. I have some puffiness. Food and exercise are a sort of medicine. Life revolves around a pretty strict routine with every portion of it dedicated to make sure these lungs want to stay with this body....and this body wants to keep these lungs. And this is all just the tip of the iceberg. But thats just it, its all just an a beautiful iceberg. My miracle is worth all of these "bumps" or "hassles"....so much so that to do any of those things just to feel oxygen in my body again is nothing. I would do all that x10....no no no x100!
Breathing is the most wonderful thing. Just sit and feel yourself breathe. That right there my friends, is a gift.