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.
My Very True and Important Book Report on Charlotte’s Web, Part One - [image: charlotte_featured] While we have all been motivated to take on more of an activist role in our daily lives, we also need some intermittent distract...
6 months ago