Sunday, January 23, 2011

Dancing with 65 Roses

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 child I was caring for needed more stimulation than I could give him.   I know putting him in day care was a great decision because I was struggling to take care of him - and I wasn't even full-time.  I was limping along, but feeling guilty that I wasn't giving him the attention he deserved. 

In September - and for years before - I was tired all the time.  And I mean ALL the time.  Most days, I would take one or two naps, each lasting at least 4 hours.  And I would try to sleep 10-12 hours at night, so I was only awake about 8 hours a day.  Until we finally got slapped by Captain Obvious and realized I needed O2 when I sleep.  And I've been awake ever since. 

Before the oxygen, I could go two or three days at top speed, and then I would sleep for one full day.  That's how I traveled; it's how I lived.  Now, I can go almost two weeks before I need to stop and rest for a full day.  And if I take partial days to rest I can go longer.  The only way for me to describe how it feels is by saying it's a miracle. 

And now, I'm dancing with 65 Roses. 

I love ballroom dancing. I have for almost 10 years now.  When I was my sickest, a family friend suggested that I become a dance teacher, and that idea has stayed with me, although I figured it would never become reality because I didn't have the energy. 

Babysitting on a regular basis for a year BEFORE I had the oxygen at night boosted my confidence in my ability to do things - to be able to lead a more normal life instead of waiting around to be sick.  The Mannitol allowed me this freedom.  I don't worry when I will spend the next two weeks in the hospital.  I feel much more like a regular person. 

So when I lost the babysitting position, I was worried I was going to be bored stuck at home.  I would have made about 10 million quilts by now... so it's a good thing I stumbled upon the perfect opportunity for me.

I got an email from the dance studio where I had taken a class over the summer.  This email came about two weeks after I lost my babysitting job and when I was starting the oxygen at night.  The email said the studio was looking for more ballroom instructors - so I replied and ended up a ballroom dance teacher.  It happened really fast, and the details are complicated, but basically I am a student teacher at the studio.  I am learning to teach what I love - ballroom dancing.  The studio was also looking for someone who could possibly teach classes for children, and I fit perfectly into that role with all my experience and my love for kiddos. 

I started my 'job' (it's complicated... but I'm working part-time and have worked a lot with my rep from Social Security to figure it out... and this is the first year I have to file taxes, which is a whole 'nother story).  I fell in love with my job - I love helping at the studio with secretarial work.  I love decorating the studio and helping with parties.  I love training with the owners of the studio.  I love teaching my classes.  I love everything about my job and I'm am completely happy. 

Since October I have thought a lot about this post and how I would announce formally that I am a ballroom dance teacher.  I've thought of what I had to go through to get here - and how I would do it all again to get to this spot. I'm in love with what I'm doing and I'm slowly figuring out how to balance my time between fun, work at the studio, and the boring things like dishes and laundry.  I honestly never dreamed that I would get here.  I thought my lungs would never be okay enough to do this stuff.  And that's what they are - they aren't great, but they are so much better than they used to be.  I try not to take a single breath for granted because I know what needing IV antibiotics feels like.  I know how hard it is to walk when you're sick from your CF.  Every dance step I take is for all the people I know and all those I don't know who have CF.  I'm living my life the best way I know how because I can. 

That is how I ended up Dancing with 65 Roses. 

Tuesday, January 18, 2011

The Best

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 not agree that I was a "good" patient.  I think it says something like "difficult" in my chart, which basically means, "pain in the ass because she won't give up until she gets what she wants."

Now that my health is better, I still want to continue my crafts - and be amazing at them.  I want to continue to write in my journal at a champion rate, and blog creatively, openly, and in a way that shows some sort of talent.  I want to keep reading books that inspire me or get me thinking. 

I have more to add now that I'm doing better.  I think this might be the first time I have mentioned this in my blog, but I have a part-time job as a ballroom dance instructor.  And I want to be the best ballroom dance instructor I can be.  I've been making flashcards and studying the dancing and striving to learn as fast as possible so I can be THE BEST right now.  I don't want to wait; I want to be good now. 

So I put all those together and I'm swamped.  But I still have a couple more things - the most important things - that I want to be THE BEST at.  I want to be The Best friend I can be, The Best daughter/sister/granddaughter/cousin/auntie I can be, and The Best friend I can be.  I think right now I'm having the hardest time fitting in this last part.  I don't know how to fit in all my favorite people around my favorite hobby/job: dancing. 

My new job seems to be taking and eating all my free time - well, the time when other people are free, mainly evenings.  I'm free in the morning because I rarely work before 11 and I'm free in the afternoons, sometimes. 

I want a way to better balance my time so that I can be The Best at all I do (even if it means being THE WORST at laundry and dishes and housework because those things are less important to me.  I'd rather be The Best at everything else and have my house a mess!)

Monday, January 10, 2011


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 or soup in a bread bowl, and sometimes even Noodles.  But for the most part, I eat little meals that are low to no carbs.  And I'm really proud that 1) I'm sticking to something and 2) It's working!!!

I finally feel that if I lose weight, FABULOUS, but if I don't, that's okay too - because I'm me.  I may not really like the way I look in photos or in the mirror when I teach, but the more weight I lose the more I feel comfortable with myself and tell myself I don't need to lose weight.

Daily Updates

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 has a wonderful blog about Gravestones and related topics - and I find her writing beautiful.  This entry especially:

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! 


Wednesday, January 5, 2011

Oxygen Face

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?

My Blog List

Site Meter