In my 7th grade science class, Mr. Linch would often show a movie and require us to write down at least 10 or 15 facts from the movie. Of course, I would try to write down my notes within the first 5 minutes of the movie so I could goof off the rest of class. While I don't really remember anything from that class (7th grade was 20 years ago), I do remember Mr. Linch was one of my favorite science teachers. In honor of Mr. Linch and my love of science, here are 10 movies notes from the recent Sonoma County screening of The Power of Two!
1. The Power of Two follows the lives of the Stenzel twins, Ana and Isa. They have Cystic Fibrosis and both received the gift of life through organ donation.
2. The Stenzel twins are Japanese Americans. Cystic Fibrosis is not common in the Japanese population. Care for those living with CF in Japan is archaic, as many resources and medications that are common in most developed nations for CF patients are not available in Japan.
3. Organ donation in Japan is not common. In 2008 only 198 transplants took place. While in the United State over 28,000 transplants took place in the same year.
4. While the primary focus of the documentary was Ana and Isa experience with CF and transplant, the secondary focus was the concerns with organ donation in Japan. Less than 1% of the Japanese population are registered organ donors.
5. Ana and Isa are advocates for organ donation. They have toured around the United States to share their story and spread awareness about organ donation.
6. They traveled to Japan to share their story in hope to change the view of the culture's perception on organ donation. Not only where they able to influence a change in the law to make organ donation a more feasible option, they also facilitate the availability of four CF medications in Japan. (I think last fact as provided after the movie and not actually part of the movie).
7. The documentary uncovers the raw emotions of living with Cystic Fibrosis. Both sisters faced end-stage lung disease. Niether Ana or Isa would of survived without organ donation. Hearing their accounts of facing end-stage lung disease was powerful and emotional.
8. The reality of Cystic Fibrosis is always hard to watch. "This will be me someday" is a difficult reality to face.
9. Hearing Ana and Isa's stories help keep me focused on taking the best care of myself. It motivational and inspirational. Not just in my own health, but being part of a community and making a difference.
10. These woman are very brave for sharing their story. From their emotions to actually showing their scars, they bear it all. In my own life, I still don't really want to talk about CF with people. But it is important. This film will help me to be more comfortable with telling my story.
Friday, January 27, 2012
Wednesday, January 4, 2012
Work Out Wednesday-Swimming in the Winter
I don't really know what it is like to live in a place with cold weather. I did live the first 9 years of my life in Chicago, but I can't really recall living in that kind of cold and snow. Cold to me is our mornings here in Sonoma County where there is ice on the car windshield, maybe the low 30's. Our average high in the winter is around 50. It is not freezing, but it is not warm either. But regardless, I still get out in the pool twice a week. That is, I get in an outdoor pool twice a week.
Most places that experience sub-freezing temperatures are equip with indoor pools, so swimming is possible, regardless of the elements. Being here in California, my gym only has an outdoor pool. I'm out there in the pool no matter what the whether, but at least I don't have to worry about jumping into a block of ice.
I actually love swimming in the winter. It is peaceful and quite. There are not many people that stick with swimming in a outdoor pool year round. Some days I have the pool to myself. And I swim one day a week at dusk, so I am not only surrounded by nature, but I usually can watch the sunset. I also think it is easy to get in the water during the winter. The water is way warmer than the outside air, so it actually feels comfortable to jump in.
Swimming has really helped keep my back pain under control and my lungs in great condition. I usually do water aerobics class on Saturdays and my own version of water aerobics on Tuesday evenings.
Here is one view from the pool. See you in the water.
Most places that experience sub-freezing temperatures are equip with indoor pools, so swimming is possible, regardless of the elements. Being here in California, my gym only has an outdoor pool. I'm out there in the pool no matter what the whether, but at least I don't have to worry about jumping into a block of ice.
I actually love swimming in the winter. It is peaceful and quite. There are not many people that stick with swimming in a outdoor pool year round. Some days I have the pool to myself. And I swim one day a week at dusk, so I am not only surrounded by nature, but I usually can watch the sunset. I also think it is easy to get in the water during the winter. The water is way warmer than the outside air, so it actually feels comfortable to jump in.
Swimming has really helped keep my back pain under control and my lungs in great condition. I usually do water aerobics class on Saturdays and my own version of water aerobics on Tuesday evenings.
Here is one view from the pool. See you in the water.
Sunday, January 1, 2012
Looking Back, but Moving Forward
As the current year comes to an end, it's hard not to reflect on the significant events I encountered during 2011. Items worth noting include:
Becoming a Registered Environmental Assessor
I had very little problems with my sinuses and have not had a sinus infection for a whole year.
New treatments have increased my lung function and have minimized my CF symptoms.
Disneyland
Spring Training
Another successful Great Strides
Vicky and David's Wedding
Quest for 30 Parks-Park #10-US Cellular Field
Hawaii
Completed our Foster-Adopt application and have our foster parents license.
My husband has his own car.
There were difficult times in 2011 as well. Both of my dogs each had surgery twice. My dog Dotty had her toe amputated due to a cancerous tumor. But there is no sign of internal cancer, so her condition seems much more manageable. My grandma fell and broke her hip. I struggled with managing back pain. I learned a friend took his own life. I said good-bye to two special CF friends, Joe and Hannah.
What is in store for 2012? We are in the process of planning our Spring Training trip, the Cystic Fibrosis Foundation's San Francisco's Finest event, Paws for Love, A's games, I am being considered to work in a different program at work, hoping to visit Disney World for my 35th birthday, and hoping we are matched with a child to adopt.
I also have a few goals for the new year. I'd like to read more. I have a lot of "to-read" books on my list and I would like to take more time to get to my reading list. I need to be better about taking my vitamins. I would like to sell home made crafts on etsy. I want to focus on being positive. I want to set aside time during the day for practicing relaxation.
Happy New Year
Becoming a Registered Environmental Assessor
I had very little problems with my sinuses and have not had a sinus infection for a whole year.
New treatments have increased my lung function and have minimized my CF symptoms.
Disneyland
Spring Training
Another successful Great Strides
Vicky and David's Wedding
Quest for 30 Parks-Park #10-US Cellular Field
Hawaii
Completed our Foster-Adopt application and have our foster parents license.
My husband has his own car.
There were difficult times in 2011 as well. Both of my dogs each had surgery twice. My dog Dotty had her toe amputated due to a cancerous tumor. But there is no sign of internal cancer, so her condition seems much more manageable. My grandma fell and broke her hip. I struggled with managing back pain. I learned a friend took his own life. I said good-bye to two special CF friends, Joe and Hannah.
What is in store for 2012? We are in the process of planning our Spring Training trip, the Cystic Fibrosis Foundation's San Francisco's Finest event, Paws for Love, A's games, I am being considered to work in a different program at work, hoping to visit Disney World for my 35th birthday, and hoping we are matched with a child to adopt.
I also have a few goals for the new year. I'd like to read more. I have a lot of "to-read" books on my list and I would like to take more time to get to my reading list. I need to be better about taking my vitamins. I would like to sell home made crafts on etsy. I want to focus on being positive. I want to set aside time during the day for practicing relaxation.
Happy New Year
Monday, December 26, 2011
Making Holiday Memories
I hope everyone had a very Merry Christmas. I am sad to announce, I was sick over Christmas this year. It seems I had some type of food poisoning the night of Christmas Eve. Its hard to say for sure, but I was up in the middle of the night with terrible stomach pains. They were very intense. Once things calmed down, I was able to sleep, but my stomach hurt most of Christmas day. I also didn't feel like eating much and was advised by the on-call doctor to eat a plain diet. So my Christmas/Birthday dinner was steam veggies and rice. I was not able to enjoy any of the good food or even my birthday cake.
I was still able to enjoy some time with family, although I really didn't do much besides sit on the couch. We watched the Bear/Packers game, which was just depressing. I am feeling better now and even eating again. This is also not the first time I have been sick on or around Christmas. In fact, I was sick last Christmas. I hope this is not becoming a new tradition!
Speaking of traditions, I have been wanting to post some pictures of my Christmas ornaments. Decorating the tree this year, I realized that they make up so many memories for me. Almost all of my ornaments are gifts, which alone make them special. Here is a look.
I have ornamanets that are....
older than me and belonged to my mom.
hand-made with love.
collectible and worth money.
not valuable at all, but are worth more to me than any dollar value.
part of a series that I have been collecting for 21 years this year.
from our pop culture like Lucy, Elvis and Scooby Doo.
glittery snowflakes which are on their own special tree.
representative of who I am as a person. Lots of dogs and sewing.
in memory of my dog Cocoa, who we lost 10 years ago this year.
special gifts give to us as wedding presents.
from Ethan's collection and represent who he is as a person. Super heros and skiing.
that my sister and I fought over when we moved out of our parents house. Mom had to split them up between us.
I was still able to enjoy some time with family, although I really didn't do much besides sit on the couch. We watched the Bear/Packers game, which was just depressing. I am feeling better now and even eating again. This is also not the first time I have been sick on or around Christmas. In fact, I was sick last Christmas. I hope this is not becoming a new tradition!
Speaking of traditions, I have been wanting to post some pictures of my Christmas ornaments. Decorating the tree this year, I realized that they make up so many memories for me. Almost all of my ornaments are gifts, which alone make them special. Here is a look.
I have ornamanets that are....
older than me and belonged to my mom.
hand-made with love.
collectible and worth money.
not valuable at all, but are worth more to me than any dollar value.
part of a series that I have been collecting for 21 years this year.
from our pop culture like Lucy, Elvis and Scooby Doo.
glittery snowflakes which are on their own special tree.
representative of who I am as a person. Lots of dogs and sewing.
in memory of my dog Cocoa, who we lost 10 years ago this year.
special gifts give to us as wedding presents.
from Ethan's collection and represent who he is as a person. Super heros and skiing.
that my sister and I fought over when we moved out of our parents house. Mom had to split them up between us.
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Tuesday, December 20, 2011
Replacement Nebulizer
Over the weekend, I celebrated Christmas with Ethan's family at his Grandma's house. Every year they have a tradition of serving bagna cauda. This is an Italian dish that is much like fondue in which you cook meat and veggies in a mixture of garlic, anchovies, olive oil, and butter. Each person makes their own serving and the oil stays hot for most of the party so you can eat as much as you want, when ever you want. It is actually really good. Except for one part...the smell.
It's not really that it smells bad necessarily. It's that the smell saturates everything in the whole house. Clothes, shoes, purses, jackets, hair, every possession inside the house. This smell is a topic of concern and conversation each year. First there is this big build up to the day...no one can talk about going to Grandma's for Christmas without mentioning the smell of bagna cauda. There is strategy...only bring items inside which you only really need and leaving everything else in the car. There is the aftermath...carrying cloths home in plastic bags, showering at the first chance, and of course the complaining about how bad everything smells.
This is the 11th Christmas Ethan and I will be celebrating together. And although I have not spent each year at Grandma's, I've been around long enough to know the controversy over this smell. The build up and worry over the smell is such a big deal, I've actually been under the option that most just take it a little to far. It kind of gets old year after year, the same comments...just wash your clothes it will be ok. Well, I thought this way until my experience this year.
Being a good CFer, I of course took time out of the party for treatments. I took my nebulizer upstairs, away from the party and the food and the guest to have a little privacy and not have my loud equipment disturbing others. I did my treatments, washed the cup, packed it up, and went about my business. The next day, back in my own home, I started doing my treatments and I could actually taste the bagna cauda in the meds. At first I just thought I would need to sterilize my cup, but then I realized the compressor itself had the smell in it. IN IT! I could actually smell this stuff in the fan and coming out of the tubing. After running the machine for about a half hour (not while using it, just letting it run) it still smelled. I finally realized that the constant comments about the smell were not an exaggeration . It was really. I was now too a victim of the bagna cauda.
I actually had to order a whole new nebulizer. Luckily, my doctor order the new machine and it was delivered to me the same day. And with no co-pay. I was really worried that I would miss a bunch a treatments waiting for a new machine, but the insurance was really responsive. Even though I have been with my new insurance two years now, I still can't believe how much better it is then what I had before. Seriously, it probably would of taken three weeks just to get the order approved with my old company. If there is one positive thing I can say about having CF, it is that my team takes my health and well being very seriously. For this I am thankful.
It's not really that it smells bad necessarily. It's that the smell saturates everything in the whole house. Clothes, shoes, purses, jackets, hair, every possession inside the house. This smell is a topic of concern and conversation each year. First there is this big build up to the day...no one can talk about going to Grandma's for Christmas without mentioning the smell of bagna cauda. There is strategy...only bring items inside which you only really need and leaving everything else in the car. There is the aftermath...carrying cloths home in plastic bags, showering at the first chance, and of course the complaining about how bad everything smells.
This is the 11th Christmas Ethan and I will be celebrating together. And although I have not spent each year at Grandma's, I've been around long enough to know the controversy over this smell. The build up and worry over the smell is such a big deal, I've actually been under the option that most just take it a little to far. It kind of gets old year after year, the same comments...just wash your clothes it will be ok. Well, I thought this way until my experience this year.
Being a good CFer, I of course took time out of the party for treatments. I took my nebulizer upstairs, away from the party and the food and the guest to have a little privacy and not have my loud equipment disturbing others. I did my treatments, washed the cup, packed it up, and went about my business. The next day, back in my own home, I started doing my treatments and I could actually taste the bagna cauda in the meds. At first I just thought I would need to sterilize my cup, but then I realized the compressor itself had the smell in it. IN IT! I could actually smell this stuff in the fan and coming out of the tubing. After running the machine for about a half hour (not while using it, just letting it run) it still smelled. I finally realized that the constant comments about the smell were not an exaggeration . It was really. I was now too a victim of the bagna cauda.
I actually had to order a whole new nebulizer. Luckily, my doctor order the new machine and it was delivered to me the same day. And with no co-pay. I was really worried that I would miss a bunch a treatments waiting for a new machine, but the insurance was really responsive. Even though I have been with my new insurance two years now, I still can't believe how much better it is then what I had before. Seriously, it probably would of taken three weeks just to get the order approved with my old company. If there is one positive thing I can say about having CF, it is that my team takes my health and well being very seriously. For this I am thankful.
Wednesday, December 7, 2011
Thursday, December 1, 2011
Fund Raising Plan
As I announced in a previous blog, I have been selected by the Cystic Fibrosis Foundation-Northern California Chapter to be honored on March 8 for being a leader in our community. The Foundation has posted information about the event on their website and can be found by clicking the image above.
Over the last couple of weeks, I have planned out my fund raising plan. Most of my fund raising is going to be centered around living in Sonoma County, also known as Wine Country. I want to represent this great place I live, so I am going to turn to my local community for support. I'm starting with a 100 Bottles of Wine Campaign, in which I am looking to local wineries to donate a bottle of wine or two for use as auction items at the event. I am also trying to put together an package auction item for a Wine Country Get-A-Way, which will hopefully include hotel accommodations, wine tasting, and a around of golf.
In January I will look to my friends and family to make a donation to my campaign. In February I am planning on hosting a box lunch sale to my co-workers. I will team up with a local deli to sell lunch to my co-workers, where a portion of the proceeds will be donated to the Foundation. I also have some other ideas, but I want to save some surprises for later. I am really excited about this event!
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