No Two Snowflakes Are Alike

The Power of Two-Movie Notes

2012-01-27T15:04:00.000-08:00

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.

Work Out Wednesday-Swimming in the Winter

2012-01-04T08:04:00.000-08:00

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.

Looking Back, but Moving Forward

2012-01-01T11:05:00.000-08:00

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

Making Holiday Memories

2011-12-26T18:35:00.000-08:00

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.

Replacement Nebulizer

2011-12-20T18:41:00.000-08:00

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.

Wordless Wednesday-Treatments in Hawaii

2011-12-07T08:12:00.000-08:00

Fund Raising Plan

2011-12-01T09:13:00.000-08:00

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!

Introducing San Francisco's Finest

2011-11-18T09:07:00.000-08:00

The Northern California Cystic Fibrosis Foundation is putting together a new fundraising event call San Francisco's Finest. As part of this event, they have selected 20 young professionals in the Bay Area to head up the fundraising for the event and then be honored and recognized that evening. Honorees are nominated based on being a career oriented individuals who display leadership within the community. I am thrilled to have been selected as an honoree.

Last night was the kick off meeting for the event. The CFF staff gave a presentation on the event, including fundraising goals, expectations and available support. The Board of Directors was there too. It was very motivational. On the drive home I came up with tons of fundraising ideas. I think this is going to be a great event.

This event will most likely turn into the focus of my blog for the next couple of month, so there will be lots more information in the up coming weeks.

CF Clinic

2011-11-17T09:09:00.000-08:00

Last Thursday I had my quarterly CF clinic appointment. I can't believe how fast time goes in between appointments. I went into this appointment at the tail end of a cold...which included a bad cough. I wasn't sure how things would go at this appointment. My PFTs were all over the place compared to last visit. My FVC was down 12%, my FEV1 down 2%, but my F25-75 was up 20%. My F25-75 (which looks at the function of small airways, at least that is how it has been explained to me) has always been low. Last May, my F25-75 was at 55.6 %, the lowest measurement I have ever recorded. Now I am at 89.1%. I am confident this has a direct relation to using hypertonic saline. I have been using HTS for 7 months. Ever since day 1 of this treatment, it has been an effective form of mucus clearance. I could always tell it was removing deep mucus, that no other form of treatment has been able to touch. It has been removing junk that I didn't even know was there. And the proof is in the numbers.

My fall appointment also marks my annual blood work. I need to find a morning where I can have 20 tubes of blood drawn and sit for 2 hours for a glucose tolerance test.

We also discussed my previous sputum culture. I grew all kinds of bugs this time: aspergillus fumigatus, phoma, pseudomonas aeruginosa, and mycobacterium abscessus. No staph, for whatever reason. This is the first time I have cultured mycobacterium abscessus. The doctor explained that m. abscessus is a water mycobacterium and is hard to avoid. It can be introduced into the body just by taking a hot shower. I have another culture being analyzed. If I grow the bug again, I am going to go for a CT scan to see if there is any evidence of the mycobacterium causing disease in the lungs. Otherwise, we will just continue to monitor PFTs and general health without an aggressive action plan.

As for my cold/cough, it has pretty much cleared up on its own and I am feeling much better.

Happy Halloween

2011-10-31T18:45:00.000-07:00

Workout Wednesday-Morning Workouts

2011-10-26T08:29:00.000-07:00

Workout Wednesday is back...for a special edition to discuss morning verses evening exercise. Generally speaking, I workout in the evenings, with the exception of my water aerobics class, which is Saturday mornings. I feel my best working out in the 4:00 to 5:30 time range. Its right after work, so it is easy to get there. It is before dinner, so I am not too hungry while exercising. And I seem to have a good amount of energy at that time of the day.

Over the past couple of weeks, I had to workout in the mornings in order to fit exercising into my schedule. It is a hard adjustment, although there are some nice benefits to working out in the morning. First, I get the responsibility completely out of the way. It is really nice to get off from work and have the whole evening to myself (minus treatments). Second, I can watch the sunrise while I workout. It makes for a pretty nice view. I also enjoy working out in the mornings because it is a great way to start the day. The energy feels good and continues through out the day.

The biggest struggle I have with exercising in the morning is eating breakfast. If I workout on an empty stomach, I really struggle with having the energy to get in a good workout. But if I eat prior to exercising, I feel too full and it upsets my stomach. I am trying different types of energy bars to see what works best. I like the Luna Bars that are high in protein. They seem to provide the proper nutrients for the right balance of energy, but are not filling.

Another minor set back to morning workouts is having to take all my stuff to the gym to get ready for work. Its a lot to remember and a lot to lug around. I have been successful so far at packing the night before, so I am not rushing around in the morning trying to remember everything while I am half asleep.

For now I am going to stick with my usual evening routine, although I am finding morning workouts are not impossible.

Recovering from a Fever

2011-10-24T08:48:00.000-07:00

Last week, I had a 36 hour fever...and the prescription was not more cow bell. The fever started on Monday afternoon while I was at work. At first I thought I was just tired. But after about an hour, I realized something was not right. I took my temperature and it was about 100. I took three advil and within an hour of that, my fever spiked to 102.

I was nervous about the fever being the only symptom. Was this a sign of a bacterial infection, as opposed to a virus? I call the advice nurse, who transferred me to an on-call doctor. I really don't like talking to a non-CF doctor, but this doctor did the best she could. She sent me for blood work and a chest x-ray. She also prescribed a anti-biotic, just in case.

The next day, in the later evening, my fever broke. It is amazing how 3 degrees difference in body temperature can make me feel so horrible. In addition to being sick, Ethan was away on a business trip. I had to try and take care of myself, the dogs, and the house with no help. Uggg.

Even though the fever was only 36 hours, it took nearly five days to really recover. I had little energy, felt dizzy if I got up too fast, and had very little appetite. I certainly was not exercising. I am thankful I am feeling better now. I am also thankful the fever seemed to be viral and not a serious bacterial infection.

Fall, October and Zombies

2011-09-29T08:00:00.000-07:00

Fall is here and October is just a few short days away. This weekend I am planning on decorating for Halloween, one of my favorite holidays.

Last November, I posted a craft blog about a zombie cross stitch project that I was starting. I wanted to complete 9 cross stitch pattern and put them together in a wall-hanging by THIS Halloween. I have been working really hard and officially finished the 9th project this week. After the decorations are set out, I am going to work on the wall hanging next. It really should not take long, so I am hoping to have it done by next weekend.

I actually found cross stitching to be a great craft. I have never done it before. It was easy to learn (I taught myself) and never frustrating. I found it to be very relaxing and comforting. It does not require a lot of energy and I could just sit on the couch at night and work on my project. But it requires just enough concentration, it helped take my mind off of stress or anxiety in my life. I am already thinking of ideas for my next project.

Here is a look at my Zombies!

These are not my original designs. I used an instruction book to create these crafts. These are scans of my finished project. If you own the rights to these designs and don't like that they are posted, please tell me and I will remove this post. If you are interested in creating these Zombie craft, please purchase the book...don't copy them from my blog. It is simply titled Zombie Cross-Stitch. Thank you.

CF Chef

2011-09-23T12:31:00.000-07:00

I came across a website that I have not seen before called CF Chef. It is an online resource for nutritional guidelines for people with CF. They also have a few recipes online. Although right now there are only four recipes, there is a promise for more recipes coming soon. They are also having a CF recipe contest, which looks like fun! They are seeking for recipes used by the CF community to stay healthy. Recipes will be judged on nutritional value, taste, creativity, appearance, ease of preparation and the story behind the recipe. Entries are due September 28. Winners will be featured on the website and the recipe will be included in a 2011 CF Chef Cookbook. I know a lot of CFers out there who love to cook and eat healthy, so why not share you favorite recipe? Good luck.

My Hawaiian Vacation

2011-09-20T20:28:00.000-07:00

From September 9 through the 16, I was on Maui, in Hawaii. We had a lovely trip. The weather was perfect, the food was great, and we had good company too. I spent many peaceful mornings on the beach, drinking coffee, swimming, and snorkeling. Most afternoons, we would sip Mai Tais during happy hour and catch the sun set. I avoided getting sunburned. The only bad parts of the trip was my back hurting most mornings due to a really hard bed and seeing a still-born baby dolphin. The mother was circling the baby trying to revive it. Horrible.

Here is a list of the good memories I will keep for this trip.

Beaches

Happy Hour

Luau

Maui Tropical Plantation

Ali'i Kula Lavender Gardens

Grand Wailea Spa Grande Massage

Snorkeling at Molokini and Turtle Town

Yummy Desserts

Sun Sets

Platypus Plus Bottle

2011-09-07T07:27:00.000-07:00

I found a new water bottle, which I am actually really excited about. It is called the platypus plus bottle. It is a flexible plastic bottle (BPA free) which, when empty, will be completely flat. It is great for traveling because it takes up very little space and does not weight much at all. I am leaving for Hawaii on Friday and this will be a great resource for the trip. I can easily fill it up before boarding the plane, take it to the beach, the fitness center, and just have it with me to stay hydrated. I also like this water bottle because the water tastes really good and does not have a plastic-y taste to it.

CF Clinic Update

2011-09-04T16:30:00.000-07:00

I guess I found something to blog about....

Last week was my quarterly CF Clinic. It was a great visit with really good PFTs. They were up slightly from last time, but still at my baseline. Small airways were down slightly, but still much improved since I started my new treatments. I did a sputum culture prior to the visit, which was nice because we were able to discuss the results. I continue to grow Pseudomonas aeruginosa, but did not culture staphylococcus aureus. We discussed why that might be and the doctor guessed it was probably due to the sample, but I most likely still will culture this bug in the future. We also discovered a new mycobacterium, chelonae. There is no treatment plan in place because of my high pfts, but it will be something we will monitor. This bacteria is common is soil and water and is common among those with joint infections, including scoliosis...which I have. I don't really understand the connection between growing this bacteria and joint disease, so I am going to ask about this at the next clinic appointment.

I also met the new social worker. She is great and I was happy to meet her. She provided me with some information on CF resources and we talked for almost 45 minutes about various themes occurring in my life right now. I think she will be a great addition to my CF team.

I am also happy to report my sinuses have been A + since Christmas. I had a few minor problems, but nothing like I was experiencing over the past couple of years. I am so thankful for my new ENT!

Traveling with a Chronic Illness

2011-08-08T08:14:00.000-07:00

I recently spent a week in the Chicago area for a family vacation. Traveling can be complicated with having a chronic illness. Not just from the perspective of all the extra medication and equipment I have to travel with, but also from the perspective of how traveling affects my illness. On the way home from this trip, I couldn't help but reflect on all the different aspects vacation can have on my health and well being. Here are some thoughts, some specifically related to this last trip.

1. The weather- the hot and humid conditions of the mid-west right now where unfamiliar and uncomfortable. The humidity felt like it added a weight to my chest. I wouldn't say it was hard to breathe, but it just felt different...like I had a weight on my chest or something. Also, due to the heat I had to pay extra attention to drinking water to keep from dehydrating.

2. Sinuses-on the flip side, my sinuses did really good in the Chicago weather. I'm guessing the extra moisture in the air kept my nasal passageways moist and hydrated. Within 12 hours of being home, my sinuses returned to being dry and stuffy.

3. Diet- I have the worst diet while in Chicago: beef sandwiches, ribs, pizza, burgers, and hot dogs. I feel like all we do is eat while we are there. The food is so good it seems worth it. But at the same time, I never get the nutrition my body needs while I am there and I notice a difference in the way I feel.

4. Exercise- I usually do good with at least trying to walk a couple times while on vacation. But I actually thought the weather conditions made it dangerous to exercise outside, so I didn't do much the whole week...unless you count playing Corn Holes.

5. Traveling with Medications- I have not encountered problems traveling with medications, except the hassle of having extra stuff to tow along. I learned that TSA like to for the nebulizer to be out of the bag for x-ray inspection. Otherwise, its pretty easy to take everything along. I always carry on my medication too. I have a fear of my checked bags being lost. Which has happened to me three times.

6. Treatments- I have been compliant with treatments while on vacation. I find doing everything in the morning helps, that way its out of the way and I can just enjoy the day without thinking about it. I do not, however, travel with the VEST. At this point in my life, it is not worth lugging around. I do the VEST to be compliant with doctor recommendations...but I don't really think it makes a huge difference with my health. So I just give myself the break while traveling.

7. Sleep- I love all the extra sleep I get while on vacation. During this trip, there where some days when I had to set the alarm and get up early, but for the most part I was getting around 9 to 10 hours of sleep a night. And I felt great! I didn't feel tired at all this trip. Didn't even take a nap. But after being home for 24 hours, I went right back into feeling like a zombie by 7 pm after working and going to the gym.

8. Germs- Airports and airplanes are dirty and germy. I am always paranoid that I will end up sick while on vacation due to the exposure to germs while traveling. This trip went great, no illness. Not even post vacation.

A Note About Responsibilities

2011-07-19T08:04:00.000-07:00

As an adult, life is full of responsibilities. At times, I feel like responsibilities consume my life. For me, I spend time doing the things I need to do first and the things I like to do second. Most days, I don't even finish the things I need to do. I can't keep up. And I can't find balance. As a result, my days are packed full of trying to fulfill responsibilities, taking care of myself, my home, my husband, and my pets. In the end I have little time for hobbies and being social. Here is an example of my typical week:

Monday through Friday: I get up, get ready for work, and try to be at work by 7:30. After work, I head straight to the gym where I try to get in a good 45-60 minute workout. Go home, make and eat dinner with Ethan. I try to find about 30 minutes to wind down by reading, watching part of a baseball game or work on cross stitch. After which, I have treatments, which take about 45 minutes all together. Once treatments are over, it is about 8 o'clock. All I have the energy for is to read or watch TV before going to bed around 9:30. Usually I am so tired by then, staying up until 9:30 can be a challenge.

Saturday: I sleep maybe an hour later than the weekend, but still get up early so I can have a quite morning with coffee, reading or watching baseball highlights from the previous evening. Off to water aerobics at 10, usually getting home around 11:30. Make lunch. Go to the grocery store and prepare food for the week like cutting up fruits and planning meals for the week. I usually finish this around 4. Do treatments next, followed by making or eating dinner. All the while trying to get laundry done, straighten up the house, run errands, and do all the things I need to do on the weekends that I can't get to on the weekdays.

Sunday: Sunday is my general do nothing day...which rarely ever happens. I don't go to the gym and I try to get all my chores done on Saturday, so Sunday can be limited to cooking dinner and treatments. BUT...if we have plans to be away from home on a Saturday, all my Saturday stuff defaults to Sunday. Giving me very little time to myself on the weekends. For example in August we have plans every. single. Saturday. There won't be much time to myself.

Thus, I am usually left feeling like I never have enough time to complete my responsibilities and still have enough time to relax, do fun stuff, and be social. Any alteration to my schedule leaves me feeling overwhelmed. It's so hard to be spontaneous. The hard part is it is hard to make time with friends unless it is scheduled well in advanced. This helps me adjust my schedule around to accommodate those plans. And for the most part, I don't think people understand this. Yes, as adults we are all busy. But as a CFer, I can't compromise my well being for a social life. Treatments and exercise are a must in my life. During the week, I'm not left with much else. I don't think a lot of people really understand life with CF. But having friends is also important, so I try very hard to include being social as part of my life.

I think this is why vacations are such an important part of life. Yes, they are fun and exciting, but there are not much responsibilities while on vacation. There are still treatments, and exercise is a little different, but the rest is relaxing. I would not survive with out my vacations. That is why I take like 5 a year. :)

Top 10 Movies About Summer

2011-07-07T08:23:00.000-07:00

After a freak rain storm last week, temperatures have been in the 90's and I would say summer is officially here in Northern California. I have a little tradition that takes place on the first really hot day of summer...I watch the movie Weekend at Bernies. I don't know why I started this, but I have been doing it for years. Actually, I only watch this movie in the summer time and it is usually retired around the end of September. It sounds silly, but it's fun to have the tradition and it makes watching the movie special.

After watching Weekend at Bernies a couple weeks ago as we "welcomed" 100 degree heat, Ethan and I got to discussing other fun movies to watch in the summer time. So, I decided to come up with a top 10 list for summer movies. The basis for this list is the movie has to take place in the summer time or represent the summer in some way: last day of school, summer vacation, summer camp, etc.

10. Stand By Me
9. Can't Hardly Wait
8. Meatballs
7. Now & Then
6. Sisterhood of the Traveling Pants
5. The Parent Trap
4. What About Bob?
3. Superbad
2. One Crazy Summer
1. Weekend at Berines

Happy summer.

CF Clinic-Physical Exam

2011-06-29T06:56:00.000-07:00

I recently needed a routine physical as part of the adoption application. After realizing my primary care physician was on extended leave, I asked my CF doctor if this was something she could do for me, even though I don't have clinic again until July. The last thing I wanted was to go to a general doctor I have never met. I really needed the physical performed by someone who understands my health status, so it could be well explained on the application form. My CF doctor was more than happy to help.

My appointment was on June 17. The actual exam was performed by a resident, but then my doctor popped in at the end to chat. We did PFTs, which were down about 5%, but still within my normal range. However, my small airways went from like 41% to 70%. I am sure that has been my highest recording since the 90's. I am positive this is a result from the hypertonic saline. So that was exciting to see, even though the rest of my numbers where slightly down. After discussing PFTs and how I have been feeling, the CF doctor decided to consider this a clinic appointment. Otherwise I would of been back next month. She was pleased with my status and asked me to schedule clinic in 3 months.

Saying Goodbye

2011-06-23T08:04:00.000-07:00

This month, I had to say goodbye to two members of my CF team. The first was Amy, the Event Coordinator of our local Cystic Fibrosis Foundation Chapter. Amy lead our Santa Rosa Great Strides Walk. She was excellent at connecting with the community, providing motivation, and just being so supportive of the mission. Amy decided to leave the Foundation to continue on with her eduction. I will miss having Amy at Great Strides, but I wish her luck with her new goals.

The second team member was my clinic's social worker, known as Mrs. Wonderful. I really connected with this person last year during my IV treatments. She really helped me deal with the emotions associated with having a chronic illness. Since then we have had many conversations about various topics, most not even CF related. Mrs. Wonderful was always willing to talk with me. I didn't have to wait for clinic to talk with her. We talked on the phone a lot. She even met with me once when I was at the hospital for an appointment with the ENT. She was such a wonderful component of my team. She completely went above and beyond her job expectation. I am thankful to have had her be apart of my team.

Saying goodbye to these women got me thinking. Having CF, I will always be connected to this community. I will always need a team to take care of me. But those on the team are connected to CF by means of a job. A noble profession, of course, but never-the-less, they are getting paid to be apart of the CF community. They have the choice to be apart of this community. I don't get that same choice. I guess it is just a realization that my CF team can change, even when don't want it too.

First IV Antibiotic Treatment- One Year Later

2011-06-20T19:07:00.000-07:00

It was one year ago today that I received my first PICC and started my first antibiotic treatment. The treatment was intended to target my sinuses, but it made me realize my lungs needed a little tune up too. Although the treatment was only mildly successful for my sinuses, the treatment really cleared up my lungs. I didn't even realize my lungs needed help...or could be helped. After the IVs, my cough was minimal, I stopped clearing my throat and I just felt clear. Most of all, this treatment made me a stronger person and an even stronger CFer. I feel like I know my symptoms better, I can communicate better with my doctors and I feel like I have a better gauge when I need antibiotics. Its not to say I have not had my share of lung problems in the last year, but my recovery from each exacerbation seems to put me back to that post-IV feeling of being clear. I'm working hard at trying to keep it that way with Vest, HTS, and pulmozyme.

This experience also made me feel more connected to the CF community. So many people offered their support during this time. It was during this time I connected with two special people in my life Josh and Stacey. Josh offered support, a prep-talk prior to my PICC placement, advice, and listened to my worries. A stranger helping a stranger. This sparked a very special friendship, which has grown into so much more than "just" CF. Love you buddy. This was also the time I met Stacey, my Soul Cyster. We learned about each other through Josh. We had so much in common, it wasn't even funny...including both having PICCs for the first time within a week of each other. Some how it was a little easier knowing someone else was experiencing the same stuff as me. Stacey, I am still amazed at all the things we have in common.

Hypertonic Saline-Eight Weeks Later

2011-06-14T07:42:00.000-07:00

Eight weeks ago I started an Albuterol/Hypertonic Saline treatment. I have to say, I love HTS. It seems to be the most productive treatment in my line up right now. Every treatment facilitates a productive cough. My lungs have been feeling really clear, I'm hardly coughing. I'm not even really having to clear my throat. It is a harsh treatment and it is uncomfortable to administrate, but the benefits really out weight the side effects of this treatment.

Using this treatment has put aspects of my disease into perspective for me. I realize just because I have normal lung function, doesn't mean that I don't need these treatments. I think my last doctor put so much emphasize on PFT numbers, he stopped listening to my needs. I went for years thinking that being congested was just part of having CF. Which it is...but there are tools out there to help. I just think this was being overlooked because of my overall health. I am thankful my new doctor is more proactive and is helping me find the right combination with maximum benefit.

Crafty Update-Gift Boxes

2011-06-06T07:51:00.000-07:00

I have been working on some new craft project over the past couple of months. I found an easy pattern to make fabric covered boxes. This project is easy and no sew. This box is created by fusing fabric to poster board, cutting out the pattern, folding and gluing. I made this box to use as a gift box for a bridal shower gift. There is also a pattern for a wine bottle box and a Chinese food carton.

Triathlon Work Out....Done!

2011-05-29T08:50:00.000-07:00

Yes, I completed my triathlon work out this past week. I really enjoyed this work out. First, it was a great way to change up my usual routine. It was also nice to have a very specific focus each day, it really helped me to give it my best and accomplish my goals. The most challenging part of the work out was 60 minutes on the bike. I was not really prepared for sitting on a bike seat for 60 minutes. Not exactly comfortable. Swimming was also a challenge. I don't lap swim often, so it really got my heart racing fast in a short amount of time. I did need to stop for a water break about every ten laps. I tried to keep my breaks to about 15 seconds. Also, I didn't do any walking on the treadmill, which really helped from keeping things from getting too boring. Here is the breakdown:

Day 1: Friday May 20- 4.0 mile walk around spring lake. Total time: 66 minutes.

Day 2: Monday May 23-17.3 mile bike ride (in the gym). Total time: 60 minutes.

Day 3: Tuesday May 24-1600 yard swim. That is 64 laps. Total time: 38 minutes.

Day 4: Thursday May 26-2.2 mile walk (34 minutes) and 7.6 mile bike ride (24 minutes). Total time: 58 minutes.

The whole challenge took me 218 minutes...my goal way 210! So close! But at least now I have a baseline. For me, exercise is never about being fast. I am really focused on just being active. I would and will do this workout again, but not on a regular basis. I did miss the elliptical during this week. And I still snuck in my water aerobics class too. One day I wold like to set a goal to do the whole challenge in one day, but I don't think that is something I am up for right now. I think the next time, I might try to see what I can finish in three days and build my way up to completing the challenge in one day. Thanks to everyone for the support with this work out.

How Does My Garden Grow?

2011-05-23T08:00:00.000-07:00

Ethan works hard to keep up the garden and landscaping in our yard. Our yard is fully landscaped and does not get a lot of direct sun, so getting the right plants and veggies to grow can be challenging. Each year, Ethan adds a little something to change things up and add a little more than we had the previous year. This year, we are trying to add more color to our landscaping and he built a strawberry garden. He has been keeping a potted garden with veggies and herbs. Last year he built a raised garden in the front yard, because this area gets great sunshine all day long.

Overview of Backyard

Strawberry Garden-New for 2011

Veggie and Herb Garden

Raised Garden-Front Yard

New Flowers-Perennials like Lavender and Princess Lily

Delphinium

My Personal Gardener!

Work Out Wednesday-Triathlon Work Out Challenge

2011-05-18T07:51:00.000-07:00

To switch up my work outs, I have decided to challenge myself to a triathlon. Not in the sense where I complete a triathlon in a single day, but try to complete a triathlon during the course of week through swimming, ~~running~~ walking, and biking as part of my regular work out. Each day, I will either swim, bike, or walk (remember, I am not a runner!) and log the total distance until I complete a full triathlon. I got this idea from my parents, who did something similar a few years ago.

There are lots of types of triathlons out there, which combine different criteria for each event. This includes the Ironman, Sprint, Olympic, Half and Full. I am going to start with the Olympic. The breakdown:

Swim: 1600 yards (64 laps in a 25 yard pool)
Bike: 24.9 miles
Walk: 6.2 miles

Goals:

To complete the challenge in one week.
To complete 60 minutes of exercise per day until the challenge is met. I normally exercise for about 45 minutes a day, so I am setting a goal to do an extra 15 minutes each day.
Log the date, distance, a time each activity takes.
Write a blog about the experience.

I am guessing it will take me about 3.5 hours to complete this challenge. I figure I can bike the total distance in about an hour, swim the total distance in about an hour, and walk the total distance in about 1.5 hours. It will be interesting to see if I can keep the same pace for the whole hour each day, or if I will lose all of my stamina with the extra 15 minutes. Also, swimming 64 laps will get boring, fast. I hope I can push through to reach my goal.

The challenge starts next week.

Vest Upgrade

2011-05-12T08:16:00.000-07:00

My first Vest system came to me in 1996, shortly after I was diagnosed with CF. I received Hill Rom's Vest Model 103. My insurance would not pay for it at the time, so Hill Rom actually gave the system to me for free. Recently, I was discussing treatments with my social worker and she suggested I try to upgrade my system, since I had one of the older models. I decided to look into it just to see what my options are. Well, because I have newer insurance, they have technically not purchased a Vest for me, so a new system was authorized with no co-pay. I decided to take advantage and upgrade. I now have model 105. The new system has so many advantages including:

Size- the machine is about 2/3 the size of the old one.

Weight- New machine weighs less than the old one, making it much more portable.

The new machine is digital, opposed to the knobs on the old machine.

The new machine is programmable, making it easier to switch frequency and pressure.

The new machine has a "pause" function making it way easier to pause treatments to cough.

No more foot pedal, the new machine just goes on its own.

I am very thankful I was able to upgrade, especially with no co-pay.

May is CF Awareness Month

2011-05-02T15:46:00.000-07:00

May marks CF awareness month. In an effort to spread CF awareness, I am going to be posting little facts about daily life with CF on my Facebook No Two Snowflakes Are Alike Page. In addition to facts about CF, I am also going to post information on resources that also promote CF awareness like various people, organizations, and other awesome stuff. I hope others can join me in participating in spreading CF awareness. Check out my page, "like" it and share it too! And check back at my page frequently for updates!

Radio Spot

2011-04-27T08:12:00.000-07:00

On Monday, I was on a local radio talk show to promote our upcoming Great Strides Walk and talk about life with CF. A local woman who is a grandma to a grandson with CF works for a local radio station, KSRO 1350. I guess for a few years now she has been setting up air time for people in the CF community to go on the air to promote the cause. Another mother to two children with CF (her kids are now in their twenties) was scheduled to talk, but she didn't want to go on the air alone. I had met this person at my Chevy's fundraiser. She remembered me and contacted the Foundation to contact me and see if I wanted to participate. I said yes without hesitation.

I arrived at the radio station a little early, so they gave me a tour of the studios. Four different stations are broadcast from this location. It was fun to see the operations of these studios. Just before our air time, the DJ Steve Jaxson came out and spoke to us for like 2 seconds. I know he does this as his daily job, but there was apart of me that wanted to rehearse the whole show first so I would know what to expect. I started getting nervous...what am I getting myself into? What if I got on the air and totally froze? Everyone assured me that I would do fine. The DJ would keep things going and give prompts on what to talk about. Everything would come naturally. Which is basically what happened. Once I got talking, it was no different from just having a conversation with someone about my life with CF. The fact that a whole group of people I couldn't see were listening to me never really crossed me mind. It is really an easy way to practice public speaking skills because you can't see the audience.

Although I was able to talk about a lot of good, informative information, the interview ended and I felt like I had so much more to say. I had a great time and I hope to be able to do something like that again in the future.

Hypertonic Saline 7%-Day 1

2011-04-20T08:22:00.000-07:00

Yesterday I started a new treatment to my routine: albuterol and hypertonic saline, both nebulized. The first hurdle with this treatment was actually getting the saline solution. When I went to the pharmacy to pick it up, my prescription had been canceled. As the pharmacist explained it to me, he simply thought the prescription was a mistake (?) and did not fill the order. After explaining that yes I need the saline solution, I was then told it was not a medication that was in stock and it would have to be ordered. Thanks Mr. Pharmacist for not only canceling the order, but also not having the medication even available just on the chance that I really needed it. I was finally able to pick up my prescription Tuesday.

I've had nebulized albuterol before. It usually makes my heat beat increase, but I didn't notice that last night. The hypertonic saline is a pretty intense treatment. It instantly irritated my throat, almost like a mild burring sensation. It triggered a cough almost instantly. It was a productive cough and I could immediately see the benefit of this treatment. No noticeable side effects at this point. Looking forward to seeing my reaction over the next couple of days to see if the results continue to be so noticeable.

CF in the Community-Frank's Walk

2011-04-19T08:10:00.000-07:00

My CF Clinic puts out a quarterly newsletter about various CF topics. The most recent letter included an interview with a young man named Cody Frank, who is about to embark on an incredible journey. Cody, who has CF, is going to be hiking the Pacific Crest Trail. This trail starts near the California-Mexico border and ends near the Washington-Canada border. The trail is 2650 miles long and Cody anticipates walking about 25 miles a day. A picture of the trail is provided below.

Cody is dedicating this walk to his sister Jessie, who lost her life due to CF in 2009. He will be carrying her ashes on the hike, a promise he made to her as her life was coming to an end. The hike starts in 11 days. Please show your support to Cody. You can like is facebook page, follow his blog, donate in support of his effort, or check is webpage from time to time to see the progress of his hike. If anything, please share his story. I'd like to see full support of the CF community behind Cody and his hike.

CF Clinic Update

2011-04-12T08:07:00.000-07:00

Friday was my quarterly clinic visit. I was not positive this was going to be a great visit. About a month ago, I had started a Cipro treatment after having difficulties on vacation. I did a three week treatment and felt 95% better when my treatment ended. About a week later, I started to feel run down, like I was getting a cold. Since then my nose has been stuffy and I have been coughing more. Only having a week off of Cipro before coughing more had me on alert...usually I get a good three to four months before needing to evaluate the need for antibiotics. But a week? Not good.

PFTs, however, where telling a different story. I had my highest FVC ever and my second highest FEV1. My FEF 25-75 was the lowest ever, which I always test a lower number in this category. In fact, this number varied by nearly 20% just from doing three different tests. My doctors thoughts:

She explained that the numbers are only one line of evidence for managing care and she considers much more when thinking about treatments.
Her dilemma with me is whether to treat my symptoms with antibiotics or not.
She was not concerned with the low 25-75 number.
We talked a lot about why the numbers can be great, but not really "matching" my symptoms. I know I am allergic to grass, so there may be an allergy component to my symptoms.
We decided to go a more conservative route to treat this set of symptoms. I am going to start hypertonic saline and albuterol. I am going to give it a trail run and check in again at next clinic to see if this helps with my symptoms.

After the visit, I head over to Union Square in San Francisco for dinner and shopping. I found great tops at H&M! My favorite.

The Sights and Sounds of a Comic Book Convention

2011-04-05T18:38:00.000-07:00

April 1-3 was our annual weekend trip to San Francisco for WonderCon, a three day convention of all things geeky. My husband is a huge comic book reader...he reads about 40 books a month and usually spends about $75-$90 a month on books. Although I am not a comic reader, I do enjoy the convention. It is so much more than comic books. There is art, promos for new movies and tv shows, costumes, cartoons, games, and a variety of retailers.

Here is my top ten list of the things I did last weekend in San Francisco:

10. I met Cindy Morgan, who played Lacey Underall in Caddyshack. She was super nice!
9. I saw a promo for Cowboy's and Aliens, a new movie direct by Jon Faverau. Mr. Faverau was there to talk about the movie. He was really funny!
8. I will buy almost anything with a dog on it. I found three prints with cute dogs this year. Now I just need to figure out where to display them.

7. A company called "Kaboom" is a kids comic book company. They publish comics based on pixar characters, like Car, Toy Story and Monsters Inc. and they have a huge line of Muppet comics. I was so excited to find they were having a 2 for 1 sale. I purchased four trades: Toy Story, Monsters Inc., Muppet Snow White, and Muppet Sherlock Holmes.
6. Speaking of Kaboom, Travis Hill, Kaboom artist was there to draw personalized sketches for a small fee. He drew me a sketch of Mr. and Mrs. Potato Head from Toy Story.
5. I love the costumes at this convention. It is fun to see the creative costumes people come dressed up in. This year I dressed up as Princess Leia. The funnest part about dressing up is walking to the convention from the hotel. It is funny to watch the reaction of people. Classic!

4. I bought a limited edition Peanuts comic book. Only 100 available and only being sold at the convention. I received #97.
3. Ethan has connected with a lot of other comic geeks in the area. They are a great group of people and a lot of fun to hang out with us. And the best part about hanging out this year...I was not the only female!
2. I loved drinking a huge latte in my Princess Leia costume.

AND

1. I found a company that was selling plush internal organs including LUNGS! I was so excited! This company called i heart guts sells all kinds of organs including hearts, kidneys, etc. I am keeping my lungs in my treatment area to keep me company. I love them!

The Truth About CF and Having Children

2011-03-30T08:40:00.000-07:00

I started this blog to share information about my life with Cystic Fibrosis. I have tried to be as honest as I can with every aspect of the disease and how it affects my life. This blog has really been a place for me to reflect on my disease, in addition to sharing information with others. There has been one topic, however, that has previously been off-limits: having children. I was never really comfortable discussing the topic out here in the open. But, I have decided to take the step forward to share the whole truth about my life with CF.

Having CF and making a decision about having children is complicated. I have so much more to consider than the average person. Pregnancy can cause complications with CF, including increased infections during pregnancy. The options for treatment are limited while pregnant. Am I willing to risk not being treated for an infection while pregnant? Am I willing to risk the long-term consequences this will have on my lungs? Am I willing to pass this gene on to my offspring? Am I willing to risk having an child with CF? Once the child is born, will I be able to continue all of my treatments, including exercise, while taking care of a baby? At what point will I be to sick to care of a child? Its a lot to take on.

On top of all of this, CF can cause complications with being able to conceive. So, even if I could find answers to all of the questions above and feel completely confident about having a baby, CF may have the final say. Which I have learned to be true for me. The honest truth, I cannot have children because of this disease.

There are a lot of options out there for women and men with CF who want to have children. There are various forms of fertility treatments and options that have helped a lot of CF women or CF wives conceive children and have successful pregnancies. Ethan and I discussed every option under the sun. Fertility treatments are not the right fit for us.

But not hope is lost. Yes, I have officially declared I cannot have children naturally. I am comfortable with this. And honestly, it feels good just to admit it and move on. There is no more disappointment. The good news is, Ethan and I have decided to pursue adoption. We are in the very early stages and it will be a very long road, but we are excited at the opportunity to become parents. Our wish right now is for a toddler in need of a good, safe and loving home.

I am not planning on writing much about our adoption journey on this blog. In the future I may decided to e-mail interested friends and family updates from time to time. But for right now, we are just going through the application, interviews, home study, and a class. We won't be approved for adoption until the later part of the year. So until then, there won't be that much to update.

Cystic Fibrosis Lifestyle Foundation

2011-03-28T08:57:00.000-07:00

I recently learned about another non-profit in support of the CF comminuty, the Cystic Fibrosis Lifestyle Foundation. This group is centered around keeping people with Cystic Fibosis active. They promote the importance of exercise for those with CF, along with providing education resources to keep people with CF educated on the disease. The CFLF also has a grant to help provide financial assistance towards participating in recreational activities. They will award up to $500 to apply to costs associated with exercise and staying active. Visit http://www.cflf.org/ for more information.

New CF Resources

2011-03-26T13:25:00.000-07:00

I am the type of person that needs to know ALL of my options before making a decision. If I need scrapbook paper, I have to look at every single piece for sale before I pick the right piece for my project. If I need new shoes, I have to look at every pair...sometimes in several different stores...before making a decision. If we are trying to find a place to eat, I need to know every restaurant in the area before selecting a dining option (even when I am really hungry). It's the same with CF. I want to know about every treatment, medication, non-profit organization, book, fundraiser, forum, and website related to CF. I just want all of the information available so I can:

1. Be super educated on the disease and
2. Know what is available to make good decisions about my health.

I just want to know all of my options.

Recently, I discovered a few new resources for people with CF. My first reaction: how did I not know about these options before!? Why didn't my doctors talk to me about this!? What else is out there that I don't know about!? Just in case there is anyone else out there wanting to know all the options or to just be better educated, here are some of my discoveries.

1. First there is Quick Clean Micro-Stream Bags by Medela. These bags are designed for cleaning breatspumps for nursing mothers. But these also work great for disinfecting nebulizer cups. Pop your disassembled cup in the bag, along with 2 oz. of water and microwave for 3 minutes. Super easy and the bag can be reused up to 20 times.

2. Vitamins specifically for people with CF, by Source CF. This is a multivitamin with high doses of A, B, D, E and K. Now I am sure most doctors don't promote this vitamin because any regular multivitamin is beneficial. I love these vitamins, however, because they are soft gels and easier to swallow then the regular vitamins. This is big for me. I have trouble with swallowing those big pills sometimes.

3. N-acetylcysteine (NAC). NAC is associated with supporting a health immune system, good lung function, and has anti-inflammation properties. These is no strong evidence to suggest that people with CF can benefit from NAC. However, some people with CF take this medication and have shown benefit. I found a product called PharmaNAC, an effervescent dietary supplement containing NAC. This is available without a prescription. I do not take NAC. But I am going to talk to my doctor about it to see what her opinion is.

4. I know someone that has a portable nebulizer. Do I need to say anything else about how awesome it would be to own a portable nebulizer?

***I am not a doctor, nor am I trained in the medical field in any way. I am just one person with CF who wants to be educated and share information. I am not suggesting or recommending any of these products. Only your doctor can do that.***

Rock CF: I Out Walk CF

2011-03-22T10:04:00.000-07:00

On March 20th Ethan and I participated in the virtual race in support of Rock CF. Our original plan was to walk across the Golden Gate Bridge, but we had to cancel those plans due to a big storm in the San Francisco Bay Area that day. Instead we stayed dry by using the treadmills in our gym. Not the most exciting place to walk a 5k, but at least we were still able to participate.

The Stats:

I have declared in previous blogs that I am not a runner and I will never be a runner. So for this "run" I walked. I completed a 5k in about 46 minutes, taking 5565 steps. This is about my average time to walk a 5k.

The Pictures:

From Mar 22, 2011

From Drop Box

Thank you to Emily Schaller for making this such a successful event! And thank you to the Sharp's over at CysticLife for supporting this event and getting the word around to our community.

Great Strides- Hunt for a Cure

2011-03-17T13:01:00.000-07:00

Yes, it is that time of year again...Great Strides. This is a huge fundraiser for the Cystic Fibrosis Foundation. This year our local walk is taking place on April 30th around Spring Lake in Santa Rosa, California. I have started the fundraising process. It is always amazing to see the support and love of my family and friends.

This year, Ethan and I are trying to come up with fundraising ideas, instead of just asking for cash donations. We set up a dine and donate type fundraiser with our local Chevy's, in which Chevy's will donate 25% of all sales from our group to our walk. We are also putting together a raffle. Happy fundraising to all of my CF blogger friends also participating in Great Strides.

Experiencing a Pulmonary Exacerbation

2011-03-12T13:27:00.000-08:00

Starting February 26, Ethan and I went on an 8 day vacation. We spent four days in Disneyland and another four days in the Phoenix area for our annual Spring Training Trip. Disneyland was non-stop. We walked all day and didn't stop until late in the evenings. I was tired by the end of the day, but that is expected with exerting all that energy. But by the forth day, I was just purely exhausted. I was walking slower and just really did not want to do much in the park any more. I took a lot of the day to just sit and enjoy the environment. But I was so tired, I thought for sure I was getting sick.

By the time we got to Phoenix, I felt horrible. I thought getting a good night sleep would help, but it really did not. Soon, I started having a heavy feeling in my chest, with a shortness of breath. I could tell me lungs were getting "junky." Soon, I started coughing more than normal and I was still completely wiped out...no matter how much sleep I got. Disappointment was setting in that I picked up a cold while on vacation.

After returning home, my coughing continued, but I saw slight improvement with using my Vest again. I continued to be tired and had a decrease in appetite. I notified my doctor and soon started a course of antibiotics...my stand-by Cipro. The Cipro has really helped, as I feel my lungs are lighter and not so clogged up, although I am still coughing.

During all of this, I made the hard realization that I did not catch a cold. I experienced a CF related pulmonary exacerbation. Usually, my CF symptoms are trigger by catching a cold. But this was different. I had no other cold symptoms...only CF related symptoms. This may have been one of the first exacerbations not brought on by a cold. This is hard to face...did I run myself down by doing too much at Disneyland? Did I put my body through too much? I have always been able to just go, go, go. CF has presented complications in my life before, but for the most part I have always been able to push through, coming out fine in the end. Living the most normal life I can. But this is different. This stopped me in my tracks. Is my limit changing? How do I avoid this in the future? Is this a sign that CF will take over my life? Do I just need to be more careful?

It is hard facing my own immortality.

Work Out Wednesday-Taking Steps

2011-03-09T08:50:00.000-08:00

Last week, Ethan and I spent four days in Disneyland! During the entire visit, I wore my pedometer. Dorky, I know, but it was fun to see how much walking we actually did while there. Here are the numbers, by day:

Day 1: 26547 steps
Day 2: 19565 steps
Day 3: 15386 steps
Day 4: 15691 steps

A total of 77,189 steps. You walk about a mile for every 2,000 steps. So in four days we walked close to 40 miles. For comparison, I walk about 4,000 steps on an average day, not including any steps taken while exercising. No wonder we are hungry the whole time at Disneyland...think of all the calories we must be burning!

Joe- A CF Warrior, January 18, 1992 - February 22, 2011

2011-02-23T12:30:00.000-08:00

Last May, Ethan an I went to a Wine Tasting Event in Boonville, California, a small community in Mendocino County, located about 30 miles from the Pacific Ocean. We have some friends who started up a winery in Boonville a few years ago. After the event, we all went back to their home for more wine and dinner.

As I pulled up to the drive way, I noticed a young man standing in the front lawn...coughing. This was not a "I have a cold type cough." This was a deep, painful, and violent cough. My first thought was "He coughs like me." But a lot of people have coughs for a lot of reasons, so I did not think much of it.

Later in the evening, as we were eating dinner, I noticed this young man with the cough also had clubbed fingers. Again, clubbing can occur with other diseases, but this just struck me as more than a coincidence. While I really wanted to ask this person about his health, I just found it too personal to approach a complete stranger on the subject. I left the party wondering if I just met someone with CF in a totally random, non-CF related environment.

Then, on New Years Eve, as I was leaving the gym, in walked this same person. The guy with the cough who I met in Boonville. Here he was, a member of my small little gym. I was beginning to feel like our meeting was meant to be. Still not feeling comfortable saying anything directly to him, I decided to do a little investigating. Long story and not wanting to sound like a stalker, I was able to find this person and his girlfriend on facebook.

I sent an e-mail to the girlfriend telling her who I was, that I have CF, and I was just wondering if her boyfriend had CF too. She wrote me back confirming what I already knew in my heart to be true: Yes, he has CF. However, he really doesn't speak openly about CF and I was under the impression he really was not interested in meeting me. The girlfriend sounded interested in speaking with me and having someone in her life who understands CF. As of yet, however, we have not met.

This morning, I learned that Joe Sinnaeve, the young man I met in Boonville, California with a horrible cough has passed away. I don't know the specifics, but I do know he had CF and was only 19 years old.

The news of his death is shocking to say the least. For weeks now I have been thinking about how this person came into my life. It is not everyday you just randomly meet someone with CF. I felt a connection, like we met for a reason, a purpose. I was disappointed he didn't want to meet me, but I tried not to take it personal. I thought between me and the girlfriend we could ease him into meeting with me and being more open about CF. And now he is gone. Really, a stranger to me. Yes, I can't believe just like that he is gone...

Work Out Wednesday-Dedication

2011-02-16T15:24:00.000-08:00

Ok, so I lied. My last Work Out Wednesday post was said to be the final addition. Lets just say I am not retiring WOWs, but I am just not committing to a blog every Wednesday about exercise.

BUT

I had the need to share my work out experience from yesterday. Lately, on Tuesday, I have been having my own personal water aerobics class. Yesterday, it was pouring rain most of the day, but I really wanted to get in the pool anyway. I have talked to my doctor about swimming in the cold in an outdoor pool and she has given me her blessing, so I just can't use the weather as an excuse. The water felt great. Nice and warm. What didn't feel great was the 30mph winds that came with this rain storm. My face and ears where so cold when I was done.

And it got me thinking...am I crazy or just dedicated? I love, love, love being in the water and I just don't see why rain and wind should stop me. I'm don't live my life under the "No Excuses" philosophy, but I am dedicated enough to my exercise routine that I need a better excuse than rain to keep me out of the pool. :)

My New Craft Space

2011-02-10T08:48:00.000-08:00

For years now I have been frustrated that I don't have a designated space for my many and on going craft projects. Even though we have a three bedroom house, our extra bedrooms are small and really can't serve as a multi purpose room. Right now we have those rooms set up as an office and an extra bedroom. I tired once to craft in the extra bedroom, but there was just not enough room. Then we tried making space in our living room, but having a messy craft table in the living room just seemed out of place. I just want a space big enough to hold all of my supplies and that I don't have to clean up at the end of the day.

Over the holidays Ethan and I decided to get rid of the extra bedroom and turn it into my craft space. It was a hard decision because we like our guest to have a place to sleep when visiting, but in reality it is really under utilized space.

Then Ethan came up with a plan with a good compromise. He was going to make room for me in the garage. It would be a big space with lots of room so I can store everything in one place. My two concerns: lighting and temperature.

Here is a tour of what he came up with:

The space, including shevles (shared with comic books) and space for all the Rubbermaids.

From Drop Box

A entertainment center composed of our TV/DVD/Receiver recently replaced in our living room.

Additional lighting

And a space heater!

Work Out Wednesday-Final Edition

2011-02-09T08:33:00.000-08:00

I started Work Out Wednesdays because I wanted to write a blog on exercising. I found I had so much to say on the subject, that I needed to write several blogs, not just one or two. I realized this morning, I have said most of the things I wanted to say about exercising. So far now, I am retiring Work Out Wednesdays.

But I wanted to conclude this blog series with a few thoughts to wrap up my lessons learned. Here they are:

I have CF. I do not use the illness as an excuse, I use it as motivation. One of the first things I learned about this illness is how important it is to exercise. It reminds me to do my best.
When I am sick, or tired, or just not feeling "it", I give myself a break. It is ok to give myself a day off. Pushing myself beyond my limits will only make things worse.
Staying active is key. I try to find things I like to do to stay active. I like to switch it up every now and then to keep things interesting and prevent my routine from getting boring.

I am sure there will be other exercises posts from time to time. But for now, be active, stay positive, and take the best care of yourself that you can achieve.

Colleen

Sleep Study

2011-02-04T08:21:00.000-08:00

Last week, my sleep study was conducted. The study is ued to determine the presence or absence of sleep apnea, or the loss of oxygen while sleeping. A common side effect of sleep apnea is sinus problems. While I don't have the "classic" symptom of sleep apnea (snoring), the CF doctor and I decided it couldn't hurt to complete the test.

I picked up the equipment from the hospital, where they gave me all the instructions on how to hook myself up and what to do in the morning, including getting the devise back to the hospital the next morning. Here is what the equipment looked like:

From Drop Box

Of course, once I was all hooked up, I couldn't fall asleep. I think it took me over an hour to fall asleep, where I would normally fall asleep within 10 minutes. Once I did fall asleep, I slept good for a couple of hours. But eventually the weight of the devise was too much on my arm. I unhooked the devise from my arm (just the machine, not the monitors on my fingers). Taking the weight off helped me sleep much better.

I was told the result would take about 2 weeks, so I am looking forward to seeing what my sleep patterns look like some time next week .

Work Out Wednesday- More on Physical Therapy

2011-02-02T08:31:00.000-08:00

I am now half way through my PT, which has a focus on back strengthening. I have PT once a week for one hour. The sessions are going very well, but they are hard! The first part of the class we work with the physio ball, working on core strengthening. We do about 7 different exercises, like bridging on the ball, holding each position for about 3 minutes. 3 minutes is a really long time when your muscles are weak or compromised. The second half of the class is a variety of different exercises like standing on a balance board, using resistance bands, and practicing the proper way to lift a heavier item. Almost all of the exercises are challenging for me, which really just proves why I need PT.

In addition to the class once a week, I am suppose to do several exercises a day, five days a week. The exercises take about 15 minutes and I have been fitting them in on my breaks at work. So far I am on the right track and have note missed a day yet.

During this time, I have been some-what worried that I am going to hurt myself in some way by taking on a more aggressive approach to my back care. There is a significant risk in damaging the disk just above my fusion. My surgeon placed a lot of limitation on my activities, he is just very conservative when it come to taking care of an injured back. He is actually against PT. After my surgery, all he wanted me to do for exercise was walk. At that time, walking was all I could do. But even after surgery, he continued to really limit my activity. These where limitations to incorporate for the rest of my life...in protection of the rest of my spine. I have lived with these limitations...and now I am weak. My Dr. hates the physio ball, now I have a whole routine centered around it. Is my doctor just being over protective? Or is the PT not considering the significance of my condition? Who do I listen to?

I will admit, I have been feeling great since starting PT. I feel like there is less pressure on my back. I feel like I am walking taller. I think for now I am comfortable with PT. I am planning on sticking with this routine for a while.

My Back, Part 2-The CF Connection (?)

2011-01-29T09:27:00.000-08:00

A few months ago, someone asked me if my back problems where connected with CF. My answer...Maybe, but probably not. First, I do know my back problems are genetic. Both my dad and my grandma (dad's mom) have similar back problems and we have all now had the same spinal fusion surgery. The big difference is I had my surgery at a very young age. And I am the only person with scoliosis. The cause of scoliosis is unknown. Doctors speculate the herniated disks and spondyloithesis was cause from the pressure of the spinal curvature being so low in my lumbar spine (the portion of the spine just above the tail bone). Those lower vertebrae hold the weight of the entire spine, neck and head. Scoliosis cause that weight to be off balance, putting more pressure on different parts of the vertebrae. It is possible the disks and lower vertebrae couldn't handle that pressure and just collapsed. It is just a theory. I think the really question is...What made my back so weak in the first place? It makes sense for this to happen to people as they get older, but not to a 12 year old.

So, is there a CF connection to my condition? In the Fall addition of CFRI News, author Shelby Cass published an article "Posture and Pain: Can't We Deal With This Later?" The article follows Mary Massery's, PT, theory about the connection between CF and bad posture leading to spinal cord compression and neurological symptoms such as pain and weakness. Her theory: the stress of coughing can lead to thoracic kyphosis (the appearance of bad posture). This can lead to damage of the spinal cord, joint pain, and neurological pain. The article goes on to stress the importance of stretching and exercise to keep joints healthy.

I don't know if this theory applies to me and I don't know if my back problems have anything to do with CF. The truth is, I will never know. I am interested in this topic, however. I am going to continue to research more about this and talk to the CF clinic to see if they have any opinions about back problems connected to CF. I'll report any interesting findings.

My Back, Part 1

2011-01-28T08:49:00.000-08:00

I received a comment a couple weeks ago asking about my back. This blog post is in response to that comment.

In 7th grade, I went through the standard screening for scoliosis. I was found to have this condition, which is when the spine curved. Around the same time, I started to have a strange pain in my leg. It would happen frequently and I had a difficult time standing for a long period of time. The pain was thought to be caused by the scoliosis. My freshman year in high school, the doctors wanted to operate and straighten my spine. Just prior to the surgery, I had an MRI that revealed two herniated disks and a condition called spondilothesis which is a displacement of the vertebrae. In other words, things were really messed up. They decided to hold of on the surgery to straighten my spine and decided instead to deal with the herniated disk first. It was clearly pushing on a nerve.

This is not my spine, but this a picture of a displaced vertebrae.

I had surgery the summer before my sophomore year in high school. It was very successful at eliminating the leg pain in one leg, but triggered the pain to move to the opposite leg. But through a lot of physical therapy and hard work, the pain subsided and my back felt great for years.
As I got older, however, my lower back really started to bother me. No amount of exercise helped. I was very limited in my activities. In January 2006, I decided to have the spondelothesis corrected and I had my spine fused from L4-S1. It was a very complicated surgery. The recovery from this surgery was difficult. I had a lot of residual nerve pain. Plus they did a bone graft from my hip and I think most of my post-surgery pain was from that. About two years after surgery I had two epidural nerve block injections, which I think helped a lot. But to this day, they area where the donor bone was taken still bothers me…it just doesn’t feel normal. What ever normal is.

I am trying to scan picture of my x-rays, but it is not working. Hopefully I will figure something out.

Work Out Wednesday- Physical Therapy

2011-01-26T08:15:00.000-08:00

This Sunday will mark the 5th Anniversary for my spinal fusion surgery. A while back I received a comment asking if I would talk more about my back problems (and if these problems connected to CF). To respond to that request, I thought I would dedicate the next week to posting information about my back problems. Here is the first post!

I started going to Physical Therapy in December to address some back pain I was having. In late October I had a flare-up and ended up in PT. Initially I was not impressed with the first PT I went to. She spent about 15 minutes showing me several different stretches and core strengthening exercises. The exercises where good; her instruction was not. With previous PT experiences, I always spent about an hour or so with the PT actually doing the exercises. This PT just showed the exercises to me and then sent me on my way to implement the program on my own. The second appointment was not any better. During this appointment, however, the PT suggested I take a back strengthening course to help with my condition. At first I was against taking a class, but I thought it couldn't hurt, especially after having such poor PT sessions.

Two weeks ago, I attended the first class. It was actually really good. The class is an hour long and I learned core/back strengthening exercises. We spend the whole hour actually doing the exercises. After the first class, I already felt like I was walking straighter and I didn't feel so much tension in my lower back. The second class was yesterday and there will be six classes all together.

The teacher also gave suggestions for at home exercises that should be performed about 5 days a week. The exercises take about 30 minutes all together. Initially, I felt a little overwhelmed because I already work out five days a week and to just add on another 30 minutes a day seems impossible. At the same time, I really like my gym routine right now and I don't want to substitute this new work out for something else I am already doing. As a trial, I am going to do the exercises on my lunch break. This way I can fit it into my normal daily schedule, without feeling like I have to spend two hours at the gym. So far it is working well.

ENT - Sinus Update

2011-01-24T09:05:00.000-08:00

I had an appointment with my ENT last week. The visit went ok. It was one of those visits that seemed to be going really well during the actual appointment, but then afterwards, I start second guessing everything that happened. I think it went something like this:

First we talked about my status. During the past 3 to 4 weeks my sinuses have been feeling really good. Probably the best I have felt in a long time. For three months I had been mixing Bactroban in my nasal rinses twice a day up until the end of December. Even during the time where I was not using antibiotics, my sinuses did rather well. Now, that is not to say that my sinuses have been perfect. I still get pressure and pain, but it is mild...at least compared to how bad things felt earlier this year. This is good news.

Reporting this good news to the ENT, I think he took that to mean "problem solved." Not that he said that out loud, but it just didn't seem like the usual ENT visit. For example, he did not use the scope to look at my sinuses. While I was excited at the time because I hate the scope, but really it is the best tool the doctor has to see what is going on. And I find it hard to believe he didn't think he needed to look up there. Looking back, I should of asked why he wasn't going to perform the exam.

I also talked to the doctor about pain control. Basically, I don't use any pain relief when I do have a flare-up because I feel like I need to gauge how bad the situation gets. Which makes it really hard to function and get through a normal day. He told me to stop doing that. And that I should contact him as soon as the symptoms starting getting bad so he can implement a plan right away. He said he has a "few tricks up his sleeve" and that I should not be suffering through a flare-up. This was nice to hear. I think I needed to hear that from him to know how to handle a flare-up better.

Another missing piece of this visit was we did not go over my medications. I should of ask to do that, just to see if we needed to chance things up or keep going on the same path. Maybe not a big deal, but it just seems like a gap. Also, he didn't tell me when he wanted to see me again. I followed up with him on this one. If my symptoms stay mild, follow up in 6 months. If I have a flare-up e-mail him and he will decide the right course of action.

Little Jeter

2011-01-20T08:27:00.000-08:00

About a week ago, I noticed my dog Jeter licking the air. I thought maybe he had some food stuck in his mouth or something. But when I checked it out, I found that he had a loose tooth. It was one of those big molars about half way back on the top part of his mouth. The next day I took him to the Vet. Just as I figured, the tooth needed to be pulled. This molar has three roots, so it is an involved surgery to get the whole thing out. Luckily, they where able to pull the tooth the same day. I feel so bad leaving my dogs at the Vet. They just looked so scared.

The surgery went fine. Jeter was pretty sad when we brought him home later that night. He would just sit around whimpering. It was the saddest noise I have ever heard. But, he was doing much better by the next morning. And a week later he is totally normal, eating crunchy food again and he even got a bone to chew for a little while.

What was really cute was the little bandanna the Vet gave him, which states "I was brave." Good boy, Jeter!

From Drop Box

Work Out Wednesday- Rock CF

2011-01-19T08:28:00.000-08:00

On March 20, 2011, I am going to be participating in the first (annual ?) Out Run CF Virtual Run! While Rock CF is hosting a Marathon in Grosse Ile, Michigan that day, they are also hosting a virtual run so everyone can participate. Also, each participant can select their own distance and pace. That being said my goal is to do a 5k walk in about 45 minutes. Although I would love to run, running is very difficult for me because of my back problems. But I can walk pretty fast, so I am looking forward to participating.

After registering, I thought about where I want to do my walk. I could just jump on the treadmill at the gym, but that sounds boring. Then I thought about walking on a path around the local lake, but that is what we do for Great Strides. Then it hit me. I live 60 miles from the Golden Gate Bridge. It is the perfect place to walk. The bridge is 1.7 miles in one direction. Around trip that puts me at about 3.4 miles, just over a 5k. I am so excited about this. I am pretty sure Ethan is going to walk with me too. Anyone else in the Bay Area is welcome to join us. The cost to participate is $20. And I think you get a t-shirt to wear the day of the event. A great way to promote CF awareness. I am hoping it is a nice day in San Francisco. Most days are cold and foggy, so we will just need to be ready for any weather conditions.

CF Clinic

2011-01-17T09:15:00.000-08:00

I had a quarterly clinic appointment last week. Overall the appointment was good. My PFTs where down about 9% (FEV 1), which is a little disappointing. But during my last visit, my PFTs where at the highest ever, so I knew that would be hard to duplicate. I talked with the doctor about the significance of this drop. She had no concerns, what-so-ever. First she said my numbers are still really good, even if I am below my personal best from last time. These numbers are also well within my average range for the past year that I have been attending this clinic. Additionally, she said this disease is not just about the numbers, it is also about how I feel. Since I am feeling really good right now she includes that in her assessment of what these numbers really mean. I guess I am a little disappointed because I have been working really hard; 100 % compliant with treatments and meds. I was hoping to stay at that high PFT level.

We also talked about my sinuses. My sinuses are here and there. Some days I feel fine and other days are really hard and painful. I asked about sleep apnea. I have been researching sleep apnea, as it is a common cause of sinus complications. Basically, sleep apnea is a loss of oxygen while sleeping. There is one form of sleep apnea that occurs and you would have no idea you are losing oxygen. The Dr. was more than willing to order a sleep study for me, although she did say she would be surprised if that was the problem. Yeah, well I have been surprised by test results before, so lets see. My appointment is on January 26. I will pick up some equipment and use it that night at home. I'll learn more about how it works at the appointment to pick up the equipment.

A funny thing about the appointment: I knew two other CFer attending Clinic that day. I saw one person before and one after my appointment. I met both of these women at a CF fundraiser. It was nice to be able to catch up with both of them.

Work-Out Wednesday-Water Aerobics II

2011-01-12T08:18:00.000-08:00

I am trying something new with water aerobics. Previously, I was trying to attend two classes a week: one on Saturday morning and the other on Wednesday mornings. I was taking Wednesday mornings off from work (as part of a mandatory time off program), but it was very difficult to balance going to class and then getting ready for work. So, I have decided to make my own class. I have been doing water aerobics long enough to know the proper way to exercise and fill in the time. I have "gone to class" twice now and it is working out well. I wrote up four classes to use as a guide while I am out there. It really helps to have a routine written out prior to jumping in the pool. It keeps me on track and moving the whole time I am in the water.

I find this time in the pool to be very peaceful. Because it is winter and I am in an outdoor pool, there is not a lot of other activity going on out at the pool. I am really enjoying the quite time, working out, being in the warm water. Also, because I am going after work, I am in the pool at sunset. The scenery is beautiful: not dark, not light. Love it. I am excited that this idea is working out!

No Antibiotics For Me!

2011-01-07T16:38:00.000-08:00

I am happy to report that somehow my cough managed to cease on its own and I will not be needing antibiotics at this time. I think this is the first time (in a long time) since my cough went away without antibiotics. That just never happens to me. My doctor wanted to wait for the treatment to start until my culture results where finished. I cultured moderate growth of psedudomonas aeruginosa and light growth of staphylococcus aureus, the usual suspects. I showed sensitivity to Cipro. However, by the time we got the results, my cough was minimal. I increased airway clearance to three times a day while waiting for culture results, doing Acepella in the morning and afternoon and the Vest in the evening. I think it really did the trick! I'm trying to stick with three treatments a day, but between work, trying to eat healthy, and exercise, its hard to fit it all in. CF clinic next Thursday. Interested in seeing PFT results after having a flare-up with no antibiotic treatment.

During all of this my sinuses have stay neutral, not bad, but not great. I went about 6 days with no sinus symptoms. It was such a nice break from the pain, pressure and being tired all the time. Yesterday, pain and pressure started up again, but luckily I am not feeling tired right now. I have a follow up with the ENT in two weeks.

Work-Out Wednesdays-My New Pedometer

2011-01-05T09:00:00.000-08:00

For Christmas my husband's parents bought me a Pedometer. It was something I had on my Christmas wist list. I know, it is incredibly dorky, but I thought it would be fun to have. For a while now, I have been wanting to track the distance I walk when I am at the animal shelter, when I walk around my neighborhood, shopping at the grocery store, stuff like that. I thought it would be fun to see how much I walk in a day just doing normal stuff and having a way to track the distance I walk while exercising too.

I have been using the pedometer for a few days now. I was surprised to find out that on average, I really don't walk very much just doing normal everyday stuff. Excluding any exercise, I have been averaging around 3,000 steps, which is only about a mile.

I have not really decided where to go from here with the pedometer. I think I will really focus on using the pedometer to track exercise related distances and use an app on my phone to log my progress. Once I get a sense for my baseline, I can make goals to improve my pace and workouts.

Goal Achieved!

2011-01-04T11:36:00.000-08:00

I normally don't blog much about work, but I have good news related to my career. I was pleased to find out this morning that I am now a Registered Environmental Assessor (REA). Basically, this is a license that authenticates my work as an Environmental Scientist. While the license does not provide much change in my current position, it is a great item to add to my resume. I wanted to get this license to provide growth and development in my career; to have an achievement. I had this as a goal for myself and now I can say it is achieved!

As 2010 Comes to an End

2010-12-31T13:35:00.000-08:00

2010 brought a lot of chance to my life. Most notably, switching insurance and starting over with all new doctors. I am very pleased with my decision. Although the coverage is about the same as my previous insurance, the system for this HMO is 100 times better. I am so pleased with the care of my CF team. For the first time in years, I have PFT results from every clinic visit. I have access to email my doctors, which has been a very effective way to communicate. I am just so please with this change.

2010 also brought my first (and only) IV antibiotic treatment. It was difficult to face, at first, but in the end, I am so thankful for the treatment. I learned a lot about myself and CF during this time. My lungs where unbelievable clear after the treatment. I had my highest PFTs on record ever! I learned the importance of keeping a schedule and taking medications on time. I found a way to accept that I really do have CF and that is ok. I found a way to embrace treatments and to accept that they need to be a part of my life, no matter how good I feel. I learned the importance of preventative maintenance.

In terms of non-health related items, Ethan and I had a few fun trips in 2010. We spent the weekend in San Francisco for the comic convention in April, we went to our annual Spring Training trip, and we celebrated our 5th wedding anniversary in Seattle.

As this year comes to a close, I continue to reflect on how lucky I am to be in such great health, have a good job, great health insurance, access to quality medical care, and to have such wonderful family and friends in my life.

Here is to a great 2011. Happy New Year.

Colleen

Christmas Recap

2010-12-30T08:26:00.000-08:00

Even through I was sick, I still managed to have a very nice Christmas. Plus, we were able to spend time with both sides of the family, which was nice. AND I was able to celebrate my 33rd birthday with my best friend Sarah and her family. I received lots of nice gifts. I ate way to many Christmas cookies! Here are a few picture from my house. I hope everyone had a nice Christmas and Happy New Year!

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From Drop Box

Work-Out Wednesdays-Taking a Break

2010-12-29T08:51:00.000-08:00

I thought writing about taking breaks was a fitting topic for todays post. I took a break from blogging, including last week's Work-Out Wednesday and this last week I took a break from exercise. Some times the body just needs a break. While exercise is so good for us, some times resting is even better.

The Tuesday before Christmas I got that feeling in the back of my throat...that feeling of knowing I am about to get sick. Not wanting to be sick for Christmas, I decided to take a break from work and exercise and just relax. I spent the next two and a half days on the couch. Well, not exactly true, I worked a little here and there, but for the most part, I pretty much did nothing except watch movies or read or sleep. I think that was the best thing for me. I was so glad I was ready for Christmas by then, because there is no way I would of been able to go out shopping or even wrap a present.

As for the symptoms, the cold was some-what mild, until it moved to my chest. I had sinus pressure and pain. Of course it went into my chest several days later. I had a tight, heavy-ness in my breathing. My O2 was around 95%, which is low for me. I had a dry cough. As usually, all that dry coughing finally got things moving around and I am getting up a lot of mucus. I sent a culture in this morning and I am sure this will be followed up with antibiotics. Such is life with having CF.

I have not exercised for over a week. I am ok with this. I think my body really need the break. But I am ready to get back to the gym. I am planning on going today after work. Its hard going back, but I really need to get with my routine.

Work-Out Wednesdays-No Pain, No Gain

2010-12-15T13:07:00.000-08:00

Some people out there share the philosophy of "No Pain, No Gain" when it comes to physical fitness. The idea of pushing yourself beyond limits to build strength, stamina, and be at the top of your game. I personally, do not believe in this concept, at least not for me. Yes, I see the need for someone training in a sport or competition to believe in this concept, in fact I can see how it would be the best way for improvement. But, my only goal with exercise is to stay healthy. And pushing myself to the point of pain will not have the same benefits as it does for others. The risk for injury is too great. The risk to end up hurt and unable to exercise is too great. Its not worth it for me.

Now that is not to say that I don't work hard. I know I am getting in a good work out when my heart rate is increased, my breathing is a little deeper, and I break out into a sweat. I don't consider this "pain." These are just indicators to me that my body is working hard and I am benefiting from the exercise. When I lift weights, I do enough reps to feel a slight burn in the muscle. Again, not until I feel pain, but just enough to know there is a benefit. With this, I know that I may never get any stronger or be able to run for an endless amount of time or distance. Honestly, no matter how hard I work out, I still can't go up a flight of stairs without loosing my breath. But this is what works for me and as long as my PFTs don't drop and my back does not hurt, I don't see any reason to do anything different.

Finding the Right Doctor

2010-12-14T13:04:00.000-08:00

In the CF world, we are lucky to have doctors who specialize in the disease. They know the disease inside and out. I feel nothing but confidence in my current clinic and the care and advise I get from the team. However, there is one aspect of the disease that clinic is not equip to handle and that is these ugly sinuses. Once the infection is manifested in the sinus cavities, there is no option but to see an Ears, Nose, and Throat (ENT) doctor. While ENT in them self are specialists, they usually don't seem to truly understand the special needs of a patient with CF. At least that has been my experience.

As I continue to struggle with sinus symptoms, I expressed concern to my CF clinic about being under the care of an ENT who doesn't consider the factors of CF. She referred me to an ENT who cares for most CF patients in my clinic, Dr. C. The main problem is Dr. C's office is about 60 miles from my house and he is really hard to get an appointment with. However, if he is the best doctor for me to see, I will drive across the country if I have too. I have seen Dr. C once. He was dry (most surgeons are) but I thought he had good ideas.

I have a follow up appointment with him in January. I thought it might be a good idea to get a culture of my sinuses and have the results available for my appointment. He agreed and referred me to a local ENT to have the sample collected. This doctor was very friendly and able to see me the same day. We talked a little bit about my history. He made a few comments to me that made me question is ability to manage care for a CF patient.

First, he advised me to use sudafed as a form of pain management. Hello, if something as simple as sudafed was all I needed to manage my sinuses, I wouldn't need to see an ENT. I have a very complicated case of sinusitis that requires something way more aggressive that sudafed. Next.

Second, he informed me that I do not have a sinus infection, because I don't have gobs and gobs of green stuff dripping from my nose. Are you kidding me? Does this doctor not know anything about CF? I don't have anything dripping from my nose because it is all stuck deep in my sinus cavities. Symptoms of an infection for me are going to be very different from the average person. Jeez.

Third, I really got nervous when he questioned why I would go on IV antibiotics for a sinus infection. IT'S THAT BAD! Don't you get it?

The doctor then collected the sample (which was the sole purpose of my visit) and offered to take over management of my care. He claimed that doctors refer their hardest cases to him and he is more than qualified to manage my case. I seriously doubt that, although I didn't say that to him. I didn't know what to say, I guess I should of just told him the truth. But this is what scares me about this problem...will I ever find an ENT who gets it? Who really understands? That will take an aggressive approach to my care? I am looking for aggressive care. Back to Dr. C in January, I am very hopeful he is the right doctor for me.

Work Out Wednesdays- Am I an Athlete?

2010-12-08T09:34:00.000-08:00

The director of the athletic club I belong to has his bio posted outside his office. In it he states "I believe everyone is an athlete." I thought about this for a long time. At first I felt some-what offended. Here I am, exercising for my health with several limitations and complications. Not to be an athlete, not by any means. Then I found myself thinking what does it REALLY mean to be an athlete? Is it someone at the top of their physical game? Someone who participates in sports? Someone with great strength and stamina? Because I am none of the above, nor can I strive to be any of these things. My exercise goals have nothing to do with be an athletic; I just want to be healthy.

I decided to look up the definition of athlete. Dictionary.com defines athlete as

"a person trained or gifted in exercises or contests involving physical agility, stamina, or strength; a participant in a sport, exercise, or game requiring physical skill."

Dissecting this definition, being an athlete is much more than being a jock and playing sports. I am a participant in exercise. Although I don't have much strength, stamina, I do have skills for physical activity. My goals may be different than someone participating in sports, but in the end I do the best I can for my own reasons. I may not be competitive or push myself beyond my own boundaries, but in my own way, for my own reasons, yes, I do believe I am an athlete.

Tackle CF

2010-12-07T07:47:00.000-08:00

The Boomer Esiason Foundation has teamed up with Sears and Smasung to "Tackle CF." By simply sharing a link to http://www.tacklecf.com/ on your facebook page, $5.00 will be donated in support of Cystic Fibrosis. This is a really easy way to spread awareness, so start spreading! You can also tweet or check-in with Foursquare.

Lab Results Are In

2010-12-06T08:42:00.000-08:00

A few weeks ago, I had my annual blood work done, which included a glucose fasting test. The glucose fasting test includes having a fasting glucose blood draw, drink a sugary drink, then waiting two hours for another blood draw. So, getting this test done is a little more complicated than just stopping in the lab for a blood draw. I took my laptop, hoping to get some work done, but there was no wireless connection. I mostly played games on my phone to pass the time.

The draw went good. My favorite phlebotomist was there. He is great. He always gets a blood draw with one poke and I can hardly even feel the needle. Makes it so much easier, especially when you have to have two separate blood draws.

I received my results and everything looks good, including my vitamin levels. In fact my vitamin A & E levels where on the higher end of "normal" and they where much higher than last years results. Vitamin D was in the normal range, but more on the lower end of the range. Glucose fasting was normal and the two hour test was even lower than the fasting level. This is a common result for me and is a general indication of being hypoglycemic. I am interested to talk to my doctor about this. I'd like to get a glucose testing kit so I can measure my blood sugars when I am feeling tired or weak. I mostly just want to see if these symptoms are caused by low blood sugar and if so, what is the best way to manage these symptoms.

The Costco Connection

2010-12-02T08:13:00.000-08:00

Thumbs up to Costco for promoting CF and organ donor awareness in there monthly magazine, The Costco Connection. This issue (December 2010, page 61) features a story about two sisters with CF. Their mom started an nonprofit to support CF. She sells a calendar call "Portraits of Cystic Fibrosis." You can find out more about the Bonnell Foundation at http://www.roadmaptocf.org/. The magazine also had an article about the importance of organ donation and gives great information on how to be a registered organ donor. Good stuff.

Work-Out Wednesdays-Aerobics

2010-12-01T16:14:00.000-08:00

While I am not big on attending some type of aerobics class, I do have a few aerobics videos that I enjoy doing from time to time. I do not use them regularly, because doing the same thing over and over is totally boring and I know I will won't continue if I get bored. But they are great to have on hand if I don't make it to the gym or I just need a quick workout. Most videos I use are around 30 minutes. And yes, I do own "Sweating to the Oldies" although I have not used in years. In fact, I believe it was the first item I ever purchased off e-bay. The other benefit about videos, is they are easy to take along while traveling, as long as you are going somewhere with access to a DVD player. Nice thing about traveling with a laptop. The downside of following a video is it takes some time to learn. It is usually hard to follow the first couple of times and the benefit is lowered because its hard to give it 100%. With almost any video I try, I can usually follow along by the third time.

I have three videos right now that I rotate through.

Actually, this last one is available on Netflix instant watch. There are lots of options through Netflix for aerobic videos. Nice thing about that, you don't have to buy a DVD. So if you don't like it, you don't have to feel obligate to use it to get your money's worth. Let me know if you have any further suggestions!

CF Research Panel

2010-11-30T07:49:00.000-08:00

A few weeks ago, I participated in my first CF research panel. I spent about an hour giving my opinions and feedback related to packaging of a new medication for patients with CF. They showed me two packaging options and then they would ask me questions about what I liked about each of them, what I didn't, which one I like better and why...stuff like that. They also had me test the accessibility of handling the medication, opening the package, etc. I guess I really never thought that so much effort went into the packaging of a medication. But I really had fun giving my opinion and hopefully contributing to putting a great product out on the market. Plus, it paid $150.00. Just for spending an hour giving my opinion.

They did not tell me anything about this medication, just that it would be sold in powder form and needs to be mixed with water. I was very flattered at the end because they said I was an excellent participant and they wish they could have more scientists on all of their panels. :)

Work-Out Wednesdays- Walking

2010-11-24T12:40:00.000-08:00

After my back surgery in 2006, I was advised by my back doctor to walk as much as I could. I started by walking up and down the hallway every 2-3 hours, slowly progressed to walking in front of the house, up and down the street, to around the block, and eventually the whole neighborhood. During this time I found a 2.5 mile route around my neighborhood that I could walk in about 40 minutes. Once completely recovered from my back surgery, I went back to other forms of exercise, but every once-in-a-while I will walk my neighborhood route.

I also like to walk around a local park, Spring Lake. The trail is paved and is a little over three miles. It is mostly shaded, so even in the summer, it is a comfortable walk.

Every once in a while I will use the gym treadmill to walk. Sometimes I just feel so tired that walking seems like it is the only thing I can do. Other times, if my back is acting up, a walk feels the best. But walking on the treadmill is really boring, I really prefer to be outside when walking.

I wish I could walk twice a day for 30 minutes in addition to my normal work out routine. But I just don't have that much time in a day...or do I?

Living by Numbers

2010-11-23T17:50:00.000-08:00

I was at the doctor the other day and I noticed a poster that I thought was influential for staying healthy. It was the "Formula for Good Health." It went something like this:

0 Cigarettes
5 Serving of Fruit and Vegetables per Day

10 Minutes of Silence, Relaxation or Mediation, per Day

30 (or lower) Body Mass Index

150 Minutes of Exercise a Week

Double Winner

2010-11-21T18:18:00.000-08:00

I received my prize from the CF adherence survey. I won a very cute 5x7 photograph of a baby raccoon. I thought about posting it, but out of respect to the artist, I don't want to publish it to the public where someone can copy it. But trust me its cute. I took it to work, so he can keep me company during the day.

I also won another raffle at the local animal shelter. Today was an open house at the Healdsburg Animal Shelter. They are trying to raise fund for a new facility. I have never been there, so we decided to drive up and see what was going on. It is a small shelter. They can only hold about 10 dogs as a time. There was a dog there that has been there for 4 years waiting for a family. He is older and has some special needs. I felt sad thinking about an animal waiting that long.

As part of the event, several gift bags being raffled off. I won a grooming kit for dogs, complete with shampoo, a brush, tooth brush, tooth paste, mouth wash, bones and a toy. It was a fun gift bag to win.

Work-Out Wednesdays-Yoga

2010-11-17T12:49:00.000-08:00

I was about 13 years old when I was first introduced to Yoga. I took a class with my mom through the rec department. I enjoyed it, but it wasn't until after college that I began to practice Yoga on a regular basis. Some time around the early 2000's, I started taking a Hatha Yoga class at the local Community College. It was twice a week, after work and the class only cost about $50.00 for the entire semester. This is very inexpensive compared to what you would pay at a private Yoga studio. It was a great class and I took it for 4 consecutive semesters.

One down side to taking classes at the community college is the summer and holiday breaks. No class. Wanting to continue with my Yoga practice, during this time I would explore other Yoga class, both at my gym and other local Yoga studios. I never really found another teacher that was as good as the one at the community college.

I stopped completely when I had back surgery in 2006. My back surgeon advised me not to do Yoga anymore. Because my spine is fused in one area, it compromises the disk above it. Doing spinal twists and hyper-extending my back is very dangerous. While the practice of Yoga may be very beneficial for the back for most people, when you have a back structure like mine, some of these poses may do more harm than good.

I am almost five years post surgery. I am not flexible by any means and I really need to work on stretching on a regular basis. I decided to try Yoga again, just to see if it could help my muscles loosen up a little. I check to see if the community college was still offering the class and I was sad to discover it was cut due to the economy. I decided to try the Yoga class at my gym. Now, you may have realized I want against my doctors orders by doing this. I am not advising this. However, a big part of the Yoga practice is listening to your body. A good Yoga teacher will always encourage their students to only do what they can, to never push beyond your ability, and to always listen to your body. Because I have learned these tools, I decided I could try Yoga again, as long as I remember my limitations.

I went to class for about two months, but have decided to stop. The class was too repetitive and I felt like there were a lot of muscle groups not being stretched. I also could not do a lot the poses because of my limitations. I am going to try and continue some basic Yoga poses on my own. Poses that I know are safe, but can help me stretch out these muscles.

I also love Yoga because a big part of the practice is breathing. I really enjoy spending the time focusing on the breath and practicing big, deep breaths. Good mucus clearance. I have even experienced good sinus drainage from breathing deep through the nose.

Craft Update

2010-11-12T17:04:00.000-08:00

One of my main hobbies is crafts. Quilting, sewing, scrapbook, you name it, I love it. I wish I could spend my whole days crafting. The truth is, I hardly have any time to craft. With working full time, exercising, and treatments, I don't really have the time or energy to craft during the week. And most weekends we either have plans or I just don't feel like doing anything. Plus, it is hard not having a craft room. My stuff is spread all over the house; to the point where I have a hard time remembering what I put where. It is also hard because I usualy craft on the dining room table. Its not a place where I can just leave everything until the next day or until I feel like working on it again. It needs to get cleaned up each day. So, if I am not going to spend the whole day working on a project, I am not going to pull all my stuff out.

But, I have been working on a few projects, which I am excited about. First, I made a purse to donate to a special charity, the Paws for Love Foundation. This is a annual event where items are auctioned off and proceeds go to animal rescue groups. I am very excited because the purse turned out great and I am happy to help out these animals, even in a small way.

I also came across a 1 Million Pillow Case Challenge that I would like to take part it. Basically, a non-profit is campaigning for crafters to unite and make pillow cases for cancer patients, foster children, nursing home, battered women, etc. I can probably make a few pillow cases with some fabric I have already, so the cost will be minimal. I am thinking about copying this idea and sending pillow cases to CF patients, especially those undergoing transplant. More to come one that.

I am also excited to participate in a craft exchange, where you are paired with another crafter and exchange a home made craft. I was assigned my partner today. She is actually the same age as me, so that is funny. I'm not going to say what I am making yet, but I will post after it is mailed.

Lastly, I started a cross stitch project. Its Zombies. I found it at Barnes and Nobel. There are 12 total projects in the kit. I am hoping to make them all and put them together in a wall hanging to add to my Halloween decorations. I am 85% done with my first pattern, so I am hoping to post once it is completed. I have never crossed stitched before, so I am just teaching myself as I go. Its a nice project to have while just sitting around watching TV.

Work-Out Wednesday-Swimming

2010-11-10T08:19:00.000-08:00

I swam competitively from around 1987-1991 on the Brentwood Dolphins (age 9-1). I definitely was not the fastest swimmer in the pool, but it was a fund sport to participate in. I made a lot of friends on the team and learned how to properly swim, which has become a valuable, life long lesson.

When I was on the swim team, I did not know that I had CF. I often wonder if my diagnosed was prolonged because of my time spent in the water. I stopped swimming when I entered into high school. It was during high school that I really started to show symptoms of CF. I was also not active in any physical sports during high school. I didn't even participate in P.E. because of my back condition.

In 2000, I lost 20% of my lung function. It was at the same time I started working full time. It was at this point in my life that I joined a gym. About 6 months later, I decided to incorporate swimming back into my life. I did not want to swim competitively again, so I just found a pool with open lap swimming and made up my own work out. Within 2 months, my lung function improved by 10%! This is when I really learned that exercise would be the key to staying healthy and ahead of this disease.

I am so grateful that I learned how to swim. Swimming is GREAT for the lungs. The whole sport revolves around breathing patterns; when to breath and how to breath. While swimming I am 80% focused on my breath. And I know my breathing is deeper and harder while swimming. It is very stimulating for mucus clearance and waking up the lungs.

Since I started water aerobics, I don't lap swim too often. As great as swimming is for my lungs, water aerobics provides a better work out for my back. And to accommodate my schedule, I have to pick one or the other. I should try to alternate between the two because they both provide great benefit for both my lungs and back.

CF Patient Adherence Survey

2010-11-08T10:44:00.000-08:00

I like taking surveys. Some CF related, some not. Recently, I took the cysticfibrosis.com Patient Adherence Survey. The questions where related to being compliant with treatments, using online resources, and opinions of tracking treatments using a cell phone app. Anyway, I took the survey, because I like doing these things. Last week I was informed that I actually won a prize for participating in the survey. I have no idea what I won, but it is exciting. I certainly did not take the survey to win anything. In fact I didn't even know my name would be part of a raffle. I can't wait to see what I won.

Speaking of surveys, I recently signed up with WWMR to participate in CF surveys. They paid me $50.00 just to join. I am on record as part of a CF panel to participate in research related surveys to improve patient care. I had my first opportunity to participate in a survey which pays $200, plus travel expenses. I didn't qualify, however, because you have to be on a specific medication, which I am not taking. But $200! That would of been nice, especially with the holidays coming up. The man running that survey said they usually do 5-6 a year for CF patients, so there will be more opportunity to participate. I think this is a wonderful opportunity to take an active role in the CF community. Contact me if you have CF or are a CF caretaker and want to participate.

Work-Out Wednesdays-Special Edition

2010-11-03T09:23:00.000-07:00

Last week, Ethan attended a training in Scottsdale, AZ for a work related topic. Because my parents live in the area, I decided to go too for a visit. We stayed with my parents for two nights and then we stayed at the hotel where the training took place for the next two nights. The training was at the Westin Kierland, a beautiful hotel and resort. Although Ethan and very busy with the conference, I took a few days to myself to just relax. I did some shopping with my mom, sat by the pool and read, and had a nice message at the hotel spa. The pool at this hotel is great. They have a lazy river, which you can sit in an intertube and let the current float you down the river and they have a fun water slide. So, what does any of this have to do with Work-Out Wednesday? Well, I had a special work out while I stayed at this hotel.

The hotel had a very nice fitness room, stocked full of equipment. It was probably one of the biggest hotel gyms I have ever seen. Anyway, as I was walking to the gym one morning for an elliptical work out, I spotted some equipment set up outside:

The weather was perfect, so I decided to jump on this elliptical for my work out. I loved it. I was so refreshing to be outside in fresh air while working on the elliptical. I hardly ever work out outside, one of the down falls of the gym. It was just a nice change of pace and it felt like a special treat. It was also very peaceful and quite in this location. Here was my view for the 45 minute work out:

30 Days of Thanks

2010-11-01T08:31:00.000-07:00

It is the start of a new month, November. A month of family tradition and celebration. This year, I decided to celebrate a whole month of being thankful, not just Thanksgiving Day. Each day I am going to post something I am thankful for in my facebook status. Then at the end of the month, I'll post them all in a blog. These days of thanks will be in no order, just random thoughts.

Today I am thankful for my career. I love the field that I work in and I feel it gives me the opportuinty to contribute something positive to my community.

Also, feel free to join along and give 30 days of thanks with me. I'd love to see what all my blogger friends are thankful for.

Happy Halloween!

2010-10-31T14:04:00.000-07:00

Not a lot planned for today, besides passing out candy to trick-or-treaters. But I do love Halloween. Ethan and I met 9 years ago today at a Halloween party. Here are a few pics of my decorations. Enjoy!

CF Clinic Update

2010-10-30T13:13:00.000-07:00

Last week was my quarterly CF Clinic. This appointment was two days following my visit to ER. I was nervous that my PFTs would be low due to the chest pain (which I have not had chest pain since the ER). And low PFTs usually lead to antibiotics. Well, I couldn't believe it...my FVC and FEV1 were the highest ever recorded. EVER. FVC was 3.93 L (112%) and FEV1 was 3.00 L (100.4%). This is a 7% increase from my last visit three months ago. I would expect the increase to be from the pulomzyme, which I have been using about 7 weeks. Plus, I still feel like I am riding out the benefits from my last IV antibiotic treatment back in June. Having such high PFTs did not help the doctor try to figure out the cause of the chest pains. She actually said the chest x-ray taken at the ER looked better than my last x-ray in January. So the chest pain remains an unsolved mystery, which is ok as long as it doesn't come back.

It is also time for my annual labs, which is like 15 vials of blood or something. I'm not sure when I will go in and get everything done, but it is on my to-do list. I have not been able to produce sputum for a sample for almost 6 months. That may be changing, as I noticed yesterday I was coughing more at work than normal.

Not much else from clinic. Most of the staff was out at the annual CF conference, so it was a short appointment.

Goals for Myself

2010-10-29T08:42:00.000-07:00

Having goals is an important part of my life. I always want to be working toward accomplishing something in my life, otherwise I personally don't see the point. I have accomplished some big goals in my life so far such as buying a house, graduating from college, and having a full time job. I think sometimes life gets so busy just keeping up with day-to-day responsibilities, that it is easy to push of setting and achieving goals. For the last couple of years, whenever I would think of something I want to do in life, I would add it to an on-going note in my Blackberry. Some of these are easy things, others may take a life time to achieve. I thought I would share that list here. In no order:

Learn how to play chess.
Design and sew my own suit.
Bake a pumpkin pie using real pumpkins, not the canned pumpkin.
Sit as a Board of Directors for an important, nonprofit organization.
Attend a Bear's game at Soldier Field in the dead of winter.
Make spaghetti sauce from scratch using tomatoes from our garden.
Take ballroom dance lessons.
Adopt a habitat at the humane society.
See all 30 major league baseball parks.
Obtain a Masters degree.
Go to Disney World on Christmas Day

That is all I have for now. I'm sure there are others I am not thinking of. But I posted this blog in a page tab at the top of the blog so I have a place to add more goals and cross them off as they are achieved!

Work-Out Wednesday-What I do at the Gym-Water Aerobics

2010-10-27T07:44:00.000-07:00

Today's post was going to be on weight training, but that is delayed due to time constraints.

I first started water aerobics about a year and a half after my back surgery. I found being in the water to be the most comfortable place to keep my back safe and strong. I got bored with lap swimming, so I decided to mix it up with water aerobics. First, I love this form of exercise. I have learned that water aerobics is as challenging as you make it. You can either work hard and get a good work out, or you can make it really easy and maybe not get as much benefit. You are in complete control. After doing water aerobics for about 2 months, my back pain improved significantly. I have made it a priority ever since.

At my previous gym the pool was indoors, so going to class was really no problem regardless of the weather. They offered several night classes, which is the only time I can participate. My new gym, however, is an outdoor pool. So it will be interesting to see how this works out during the winter. I think I need to invest in a parka. Also, the new gym only offers morning classes, including Saturdays. So, I have no classes to choose from, I can only go to the Saturday class. Which is fine, because I normally go to the gym Saturday mornings anyway.

The funniest part about water aerobics is I am the youngest person in the class...by far. It is definitely a class that older people are attracted to. Which makes sense because it very easy on the joints, so it may be the only form of exercise some people can participate in. I am glad I found this form of exercise, mostly because of how I think it helped my back. But it is a total body workout which includes water running, interval training, water weights, noodles, and stretching.

A Visit to the ER

2010-10-21T07:41:00.000-07:00

First off, I am fine.

A few weeks ago, I started having chest pains and tightness. I honestly just thought it was due to a sudden change in weather. I went from overcast Seattle to a weird and unusual 90 degree heat back home. I started using Xopenex, which has helped with tightness in the past. I also had a dry cough on and off too. On Tuesday I woke up with chest pains, the worst since the symptoms started to develop. I went to work and tried to have a normal day, but the pain persisted and I found myself thinking more about the pain then work. I called my CF doctor for advice. She highly recommended that I go to the ER. Ug.

I dislike the ER. It is usually crowded, which means long waits, surrounded by germs all to have the ER doctor have no idea what to do. My CF doctor said she would be available to help, so off I went.

I actually had a good experience this time. First, the ER portion of the hospital is new, so it was a nice environment to be in. It was so new, it just felt super clean. I was also admitted right away. One thing about being there with CF related symptoms, you usually get moved to the front of the line. I immediately had an EKG, which was all normal. The doctor came in and talked with me. He ordered an X-ray and some blood work. Having my blood drawn is always challenging and this was one of the worst experiences I've had in a while. Not only did she miss, but she then proceeded to dig the needle around looking for the vain. Pain. She missed the second time, but was able to find the vain quickly, so I was ok in the end. Man, I hate when they miss.

Then I had an x-ray with a mobile x-ray machine. It was so cool. They just rolled it up to my room, positioned me in the right manner and then took the picture. I have never seen that before. The x-ray tech noted that I have big lungs...which made me laugh. No one has ever said that to me before, I guess its a good thing.

Then I waited. Which was ok, because I was able to watch the Rangers pound on the Yankees. During which I also had an albuterol treatment. At some point the doctor came by to tell me all the blood work and x-rays were totally normal. In some cases, I hope they will find something, so at least I know what is going on. In this case, I was glad they didn't find anything. I'll take unexplained pain over nothing serious right now. I was discharged with a rx of albuterol to continue as needed.

I am fine now, the pain is completely gone. I actually have my CF Clinic appointment this morning, so I am sure we will talk more about this.

Work-Out Wednesdays-What I do at the Gym-Recumbent Bicycle

2010-10-20T07:45:00.000-07:00

I started using the recumbent bicycle when I first joined the gym, about 10 years ago. I used the recumbent bike for the lower back support. The traditional stationary bike offers no back support and my back will usually start hurting within minutes of being on the machine. The recumbent bike is a much better fit for me. I love using the bike because honestly, you get to sit while exercising. I almost feels like cheating. However, I use a pre-set program that changes the intensity throughout the ride, so it is still challenging. I also like the bike because I can read a book while on it, so it really helps the time go by fast. I use the bike once a week for 30 minutes. I usually use it following weight training, which will be my topic for the next Work-Out Wednesday.

The Vest

2010-10-19T14:28:00.000-07:00

I was given a Vest, for free, shortly after I was diagnosed with CF in 1996. It took some time to use it regularly. I remember actually being very good about using the Vest when I was in college. The interent was fairly new, so I would spend time Vesting while surfing the web. But I never really felt like the Vest was effective for me in mucus clearance. At some point I turned to exercise and discovered it was much more effective at mucus clearance. Quickly, I decided on my own, that as long as I was exercising, I didn't need to use the Vest at all. As my PFTs remained normal, it was hard for my doctor to agrue with that logic. Exercising and Vesting both take up time and it is difficult to fit both in to my routine, especially with working a full time job. So, for a decade now, I have stayed dedicated to exercise as a main form of mucus clearance. It is not to say I never use the Vest...but from day to day it just sat in the closet.

In all my recent education with CF and seeing how others are affected by the disease, I have been rethinking this position. Maybe I should be doing the vest everyday, even if it is on a day that I exercise. I just don't want to wake up one day with regret, especially if I someday get sick. I don't want to think..."well maybe if I did the Vest I would still be healthly." Now, I know if I just make a goal of using it everyday for 30 minutes I will fail. I have to start with a realistic goal. So, my goal for the next month: For every evening I plan on watching TV for 30 minutes or more, I will do the Vest. I don't know if I will necessarily do the Vest while watching TV (as the TV has to be REALLY LOUD for that to work), but I figure if I have the time to sit around watching TV, I have the time to Vest. Ah...I will be traveling this weekend and I don't have a travel friendly Vest. I'll start this week and continue on when I get back.

Focus on the Positive

2010-10-16T08:56:00.000-07:00

I sometimes loose motivation to blog because I do not have a lot of blog readers. Sometime I ask myself why I even keep a blog? I realized a couple of days ago that attitude seems unfair to those who do read my blog. Even though my "fan base" may be small, I have met some incredible people out there who are extremely supportive. I have really found a lot of inspiration through blogging, so its important that I continue to focus on all the positive aspects of this form of networking.

Speaking of supporters, I received two phone calls yesterday related to CF care. The first was from Mrs. Wonderful, the CF Clinic social worker. She was just checking on me before she leaves for the CF Conference on the east coast. She will be gone through the end of the month and won't be at my clinic appointment next week. Although we didn't get a chance to talk, it was nice of her to call.

Second, I spoke to the event's coordinator at the Northern California Cystic Fibrosis Foundation to have a kick off conversation for next years Great Strides Walk. It is still several months off, but she wanted to check in with me to give me some encouragement for fundraising.

Now, I know both of these women get paid to do these jobs. However, I think our community is very lucky to have thoughtful and dedicated professionals. I am thankful for both of them. And I truly believed that they both really do care about me and the CF community. So, instead of thinking about all those people out there that don't read or follow my blog, I'm going to remember these two women calling to check on me just because they care.

Work-Out Wednesdays-What I Do at the Gym-Elliptical

2010-10-13T08:18:00.000-07:00

The elliptical machine is my favorite piece of equipment at the gym. Actually, it is probably my favorite form of exercise because I find it challenging, it burns a lot of calories, and when I am done I just feel like I have the best workout. I have been using the elliptical regularly for about 8 years now. Initially, it really kicked my butt. I could barely do 5 minutes. I slowly worked my way up, adding more and more time over the first couple of months. I was able to quickly move up to 30 minutes. For awhile I thought that was my plateau and for years, this was my standard. About two years ago, I decided to step it up and take on 45 minutes. This amount of time has been working really well for me. I use the elliptical once a week.

The hardest part about using the elliptical is not getting bored. In addition to my essentials, I have a system for staying motivated on the elliptical: I change a setting every 5 minutes. For every 5 minutes that pass, I change the resistance, incline or direction. This way, I am not thinking about how much time I still have left to complete the exercise, but I focus on how much longer until I change a setting. Staying focused on five minute intervals is much easier on the mind than the total time remaining. This has really helped keep me on the elliptical for the full 45 minutes.

Pulmozyme One Month Later

2010-10-07T12:49:00.000-07:00

Well I have actually been on Pulmozyme for five weeks, but it has been one month since I provided an update on the treatment. The treatment is going well. I have been 100% compliant, which is exciting. Sticking to a schedule and administering the treatment at the same time has been key for me. I have had no noticeable side-effects. I did check in with my doctor about the twice-a-day dose. Apparently that was a mistake, and I am only to have one treatment a day. That change has been easy to incorporate.

Work-Out Wednesday-Joining a Gym

2010-10-06T08:56:00.000-07:00

I first joined a gym ten years ago. I joined a local club, Stan Bennett's for 19 dollars a month. I joined in September 2000. I had recently graduated from college and was working full time for the first time in my life. And I gained about 15 pounds. This was really the first time I ever gained weight and it really sneaked up on me. I thought I was immune from gaining weight. So, I ran out to join a gym to get control of my weight. I didn't realize at the time how important that decision was concerning my overall health.

In 2006, I had major back surgery. The recovery was difficult and the only form of exercise I could really participate in was in the water. I needed to join a gym with a pool. So I left Stan's and joined 24 Hour Fitness. I was a decent gym that helped me meet my fitness needs, both in and out of the water. But as the years went on, the atmosphere of the facility started to deteriorate: dirty, the pool heater was always broke, crowded, and unsanitary conditions. We decided to move on. Around April of this year we joined a country club: Fountain Grove Gold and Athletic Club. A local facility with many amenities from clean towels, tennis courts, a restaurant, and snack bar. Its at a beautiful location and I love being there.

For me, belonging to a gym is key for getting a good work-out. There is lots of variety at the gym and having a gym that I love going to really helps. I truly love being there. However, I realize the gym environment is not for everyone. And it does cost money. I personally think it is the best money I spend every month and is just as important as paying the mortgage or paying for food. Plus, I don't want to pay for a gym membership that I don't use, so the cost is added motivation. I want to get my money's worth.

For the next several weeks, Work-out Wednesdays will explore all the different things I do at the gym.

Treatments While Traveling

2010-10-05T11:44:00.000-07:00

While on vacation I really worked on keeping up with my treatments, although I was not completely successful. It is challenging on vacation, because we were away from our hotel so much. It was hard to schedule treatments, but I always made sure to plan them out at some point during the day. I was 100% with pulmozyme. Sadly, this is the only treatment that I can say I didn't miss. I only missed one sinus rinse, which was the first night on the train. I missed almost all of my evening vitamins, but didn't miss any of the morning doses. And I was really bad at using the Acapella. I need a better plan when traveling to avoid missing any treatments. But I'm trying not to be too hard on myself, just learn on how to improve.

What I didn't expect was a slump in treatments once I returned home. Now, I have not missed any treatments, but it took a few days to get back in to my routine. It was like being away and being off schedule followed me home. I found myself not sticking the the regularly scheduled out times for my treatments. And I am still slacking with the Acapella.

And yes, this will be the last blog related to vacation.

Seattle-The Run Down

2010-10-04T18:22:00.000-07:00

I never got around to blogging about my trip past days 1 and 2. I was just too busy having fun to stop and spend time on the computer. Here is a run down of the trip, including a few pictures:

Seattle, WA
September 26-October 2, 2010
Coast Starlight

World Mark-Camlin

Pike Place Market

Space Needle

The Underground Tour
Agilent in Everett, WA
Jimi Hendrix's Grave

Tap House Beer Sampling

Pumpkin Spice Lattes

A Coffee Tour

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Bainbridge Island

Olympic Sculpture Park
Red Mill Burger
Safeco Park-A's win 8-1

Woodland Park Zoo

Pub Tour

Work-Out Wednesday-Vacation Edition

2010-09-29T08:45:00.001-07:00

Being that I am on vacation, I thought this would be a good week to write about exercising while on vacation. I learned a long time ago not to have expectations of exercising while on vacation. First, vacation is a time to relax. I don't want to be constantly thinking about how to fit a work-out in with a full schedule of being a tourist. Second, most vacations I find I do a lot of walking. Like several miles a day...way more steps than I would take on a normal day. While it is not the same type of exercise that gets the heart rate up, it is still a form of exercise. I can still feel good about being active.

However, whenever I book a hotel, I do look to see if there is an exercise room. That way, if the day allows and I can fit it in, I'll visit the gym and do something a little more aerobic that walking.

I think that most important part of traveling, at least for me, is to not set up unrealistic goals and telling myself its ok to take this time off, as long as I get back to my routine once I get home.

Vacation-Day 1 and 2

2010-09-28T20:52:00.000-07:00

Very late on Sunday evening, I boarded a train, north bound to Seattle. Traveling by train was great. No airport hassle with security, long lines, and the endless worry about having enough time. The train is mellow and soothing. In total, it took about 21 hours to get to Seattle. We had a sleeper car, so we were able to sleep for the first leg of the trip. What I loved most about being on the train was having nothing to do. Well, I had my treatments, but other than that, I had no obligations. I read, played cards, ate, slept, and looked out the window. It was great. I was sad when it ended.

Our first day is Seattle was fun. We started the day off with listening to a presentation for the time share we are staying in. They quickly realized we had no desire to buy, so they let us leave with no hassle. We got $75 for showing up. Then we walked to the Public Market, looking at nice handmade crafts and all the fresh fish and produce. We also went on the Underground Tour, a tour of the original side walks of the city, which are all underground. In the early 1900's, they realized the street elevation needed to be raised to accommodate sewer pipes. As a result, there is this whole underground side walk. It is not open to the public, in fact it is private property, so the only way to see it is on this tour. Last, we went to the Space Needle for dinner. The restaurant just below the observation deck and the whole place spins, so you get a full 360 degree view. The food was excellent and the view was amazing.

I hope to post pictures when I return.

New ENT

2010-09-25T09:15:00.000-07:00

I met with my new ENT this week. I thought the visit went well. We talked about my history, surgery, antibiotics and maintenance. Prior to the visit, I was mixing pulmocourt into a saline mix and flushing the mixture through my sinuses with a Netti pot. In addition, I mix Tobramycin in the rinse, four weeks on, four weeks off. I also use Flonase. The new ENT liked my routine, but expressed concern that it is no longer effective. I would agree. So, the tobramycin is out. (Which is nice...no more sharp disposal!). He is replacing the Tobramycin with Mupirocin (Bactroban). He mentioned he had a few suggestions for me to try...before we needed to talk about having another surgery. I wasn't expecting that. My last surgery was only 2 years ago. But I guess in the back of my mind, I know it is inevitable.

I have been using the Mupirocin for a few days now. It is an ointment, so it is a little challenging to dispense. The directions call for a an 1/8 of the tube. There is no pre-measured amount, so I just have to guess what 1/8 is. That is hard for me. I am very analytical and I like exact measurements. So, I calculated how much product is in 1/8 of the tube and I found a way to measure out the amount in a tube. Its a little messy, but so far it is working out.

Work-Out Wednesdays- Exercise Essentials

2010-09-22T07:45:00.000-07:00

I have been dedicated to a consistent work-out plan for about 10 years now (with a few exceptions, like recovering from back surgery). The toughest part about keeping a successful exercise program, for me, has been staying motivated and not getting bored. I have found a few exercise essentials that keep me going and help me make it through my work-outs and reach my goals.

I can divide up my exercise essentials into two categories: the essential equipment needed to assist with a good workout and the mental mind-set I use to keep myself going back out there day to day. Although not all equipment is applicable to all forms of exercise, generally, this is what I need for a successful work out program.

Equipment

The water bottle- whether I am in Yoga, the pool or on the elliptical, if I don't have water to stay hydrated, I know I will not make it through. Water is probably the most important part of my work-out.

Good shoes-vital to a good walk, bike ride, or elliptical. I try to buy new shoes every 6-9 months.

MP3 Player-I need good, motivating, get-pumped music for hitting up the gym. I have about 10 play lists right now that I shuffle through. But there is nothing like putting together a new play list to get me excited about getting to the gym.

Pony Tail Holder- I never realized how important this small detail was until I forgot a pony tail holder one day. Having my hair in my face and on my neck while working out is the worse feeling. I couldn't even finish what I was doing it was so annoying. Ever since then, I keep lots of extras in my purse and the car.

Mental Mind-Set

First, I always set out a realistic schedule for the week. I look ahead and plan out three or four days that I can commit to getting in a good hour of exercise.

Second, I have learned to go to the gym straight from work. Going home first sets in a higher probability of making an excuse not to go to the gym, especially if it is raining. Even worse, waiting until the evening (after dinner) is almost a guarantee that I'll flake.

Third, I reward myself. I love sitting in the hot tub after a good work-out. Giving myself something to look forward too is very motivating. Ok, and yes sometimes I will reward myself with a treat, like an iced coffee or scoop of ice cream.

I have found that all of these things really help to keep me on track with my goals for getting in regular exercise at least four days a week.

Next Wednesday: Exercise and Vacation

Fear of Getting Sick

2010-09-20T08:04:00.001-07:00

I always have a fear of getting sick, as it seems I am a magnet for colds and germs. Colds are hard on me, as I always end up with a lung infection as a result of a cold, resulting in antibiotics. Now, I can accept that I'm going to get sick every now and then, maybe even a couple of times a year. But I get especially nervous about getting sick while on vacation. It seems to be a problem with either Ethan or me getting sick around vacation. Being sick on vacation is so disappointing. We work hard all year and save money to take a one week vacation. Having a cold show up during that same week is the worse.

We leave for Seattle on Sunday. Several people at work have reported being sick in the last couple of weeks. Like, really sick. Flu symptoms. I am paranoid with picking something up. A part of me wishes I would get sick now and get it over with so I am better by the time we leave. But then I worry about Ethan being sick on vacation. Wow, I hate the cold season. Keeping my fingers crossed I can manage to stay health for the next two weeks.

Flex-Elect

2010-09-16T15:17:00.000-07:00

Its open enrollment at my office; the only time of the year where you can make changes to your medical benefits. This time last year I was consumed with contemplating switching insurance companies. It was such a hard decision to make. I can now say it was probably one of the better decisions I have made concerning my health.

Another opportunity has presented itself during this year's open enrollment: the Flex-Elect Program. Also known as the Cafeteria Plan, this is a reimbursement account of out-of-pocket medical expenses. Each pay check, my employer places a designated amount of money from my pay check, "tax free" into a special account. As I encounter out-of-pocket medical expenses, I submit reimbursement claims to get my money back. The huge benefit to this program is, obviously, the tax break. It is the easiest way to essentially use medical expenses as a write off. Otherwise to write of medical expenses on your taxes you have to spend 7.5% of your income on medical expenses. Even if you don't make a lot of money, 7.5% is a lot. And having good insurance, I have never even come close to meeting this figure.

There are two down sides to this account. First, as a reimbursement account, you still have to have the money upfront. You need to be ready for the loss of income up front. The second down side is if you don't use all the money in your account within the year, you lose it. Gone. Forever. You don't want to over estimate the amount of money you set aside each month. This should not be a problem for me. Between CF clinic, prescriptions, and my allergy shots, I know I will always have regular expenses. Eligible expenses include co-pays, prescriptions, bridge fair, parking, mileage (my CF clinic is 120 miles away around trip!), eyeglasses, dental expenses, it even includes expenses for medical conferences. So if I go to CFRI next year, I can use "tax-free" income.

I guess the other down side is having to submit the reimbursements. Its just one more thing to remember to do in a busy life. But I think it will be worth it to help ease our taxes. Yeah! Why didn't I do this sooner?

Work-out Wednesdays

2010-09-15T08:13:00.000-07:00

For a while now I have been wanting to write a blog about exercise. About how important exercise has been for keeping me healthy, the ups and downs of exercise, the good, the bad, motivation, weekly routine, on and on. Because I have so much to say on the topic, I decided that I would like to write a series of blogs on exercise. I am hereby dedicating Wednesdays to "Work-out Wednesdays."

In this series of blogs I'd like to share my experience with incorporating exercise into my daily life. As a disclaimer, I am not providing any type of medical advice what-so-ever. I'm just sharing what has worked for me. Any individual, especially those with an illness, should always talk to a doctor before starting an exercise program. But I do hope I can provide inspiration to those want to start an exercise program or who need to improve their existing exercise program.

If you follow my blog and you have CF: I understand not everyone is in the physical condition to participate in an exercise program. The purpose of this blog series is not to imply you should be doing something beyond your capability. Or that you should feel bad if you are unable to exercise. If you are in this category, I will continue to send you positive healing energy.

If you are a parent with a CF child: I've often thought I really can't relate to parents of CF children. I didn't know I had CF until I was 18, so I don't have experience with being a child and dealing with CF. But, if there is one thing I have learned, staying active is one of the most important aspect of my life. I've learned that I can help parents on some level: I hope parents will see it is possible to be active and have CF. CF doesn't have to stop us from trying to live normal lives.

Next Wednesday: Exercise Essentials

Pulmozyme-One Week Later

2010-09-08T19:08:00.000-07:00

It has been one week since I started Pulmozyme. I am doing good with keep up with the treatments, including my morning treatment. Luckily, I have been sleeping good, so getting up a little early to make sure I fit in the treatment is no problem. I was not sure what to expect on Pulmozyme, mostly because my lungs are feeling really clear. I have not been coughing much since my IV treatment in June. Last night after my treatment, I had a dry, painful, and persistent cough. It hurt. I'm guessing the Pulmozyme loosened some thing up, but it was not loss enough to cough up. Ethan helped with manual CPT, but he gets tired easy. So we did two rounds. The second one seemed to help the most and shortly after which I feel asleep. Its been a long time since I coughed like that. I'm hoping its just a side effect of a new treatment, opposed to a more serious problem lurking.