Learning To Live

I have cystic fibrosis.  I have other health problems, too, but CF is the biggie.  It's the one my parents stay awake at night worrying about.  No one worries because I have fibromyalgia or because I have endometriosis.  I know my parents are concerned and sympathetic if I am having symptoms, but it doesn't keep them awake at night.  My CF (sometimes called 65 Roses by children) is currently fairly well controlled thanks to the Mannitol - my miracle.  My parents and I are sleeping better at night; they aren't up worrying and I'm sleeping soundly with my O2 taped to my face - my second miracle.  I couldn't be happier with the way the Mannitol and now the oxygen at night have helped me.  They have allowed me to pursue a dream - something I thought I might never do because of my cystic fibrosis.  I am dancing with 65 Roses.  This story goes all the way back to September, when I lost my babysitting job.  It wasn't my fault - the chi...

I think I have determined my problem, but for the life of me I cannot come up with a solution.  I want to be the best.  At everything.  My problem is I am too good at too many things - and yes, that is a very arrogant statement.  But if I do something I am going to be good at it; that is the way my life has gone - it's who I am.  In high school, if I were a member of something, I had to be the best and/or the leader.  Foresics team captain, band section leader, president of the Spanish club, etc.  If I did it, I wanted awesomeness from myself.  Not to mention I had to be awesome academically.  And I tried the same pattern in college, but I got too sick to continue that.  So I lapsed into being the best at the things I could still do - the best knitter/quilter/crafter, the best sleeper, and the best patient in the hospital.  That last one is sort of a joke.  I knew how to get what I needed, but the staff would certainly ...

I am going to admit my weight publicly on my blog.  I weigh 180, and I'm so proud because about a month ago I weighed almost 190.  When I went to clinic in November I was really heavy.  I'm still heavy - but I'm losing weight and I'm so proud of me.  And I wanted you all to know that I'm finally proud of me and my weight.  Want to know my secret to losing weight?  No carbs.  Okay, okay,  not NO carbs, but a very restricted carb diet.  I don't buy bread or tortillas anymore.  I have a carb addiction - and I could eat 6 pieces of toast in a sitting.  So if I only buy low to no carb foods, I eat better and lose weight.  I'm also eating less - and it's working.  Imagine that!  I don't deprive myself of meals or ignore my diabetes (the low to no carb diet is probably best for my diabetes, anyways).  I don't deprive myself of carbs altogether either.  About once a week I let myself eat out and get a sandwich...

I'm doing well.  I want to write about my job, my weight, my feelings on life and death, and other assorted things, but who has the time??? I just wanted to quickly post a couple things: Kyra, from www.kyrachris.com has a wonderful blog about Gravestones and related topics - and I find her writing beautiful.  This entry especially: http://imageinstone.blogspot.com/2010/11/of-reality-life-and-death-part-ii.html I think I want to work on my book again... and I think I should make Chris and Kyra the editors.  Because they are both wonderful writers and know me so well. But first, I'm going to finish my brother's quilt in my 'spare' time.  See the craft blog for that post!  ~Carla

So I think I have a permanent case of Oxygen Face.  Oxygen Face is what I call the indents from the nasal cannula on your cheeks.  This is going to be a very short post - because, I'm wondering, does anyone else get Oxygen Face?