CF Research Panel

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

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

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

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

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

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

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

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

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

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.