As 2010 Comes to an End

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

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

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

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

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?

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

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

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

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

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

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.

Happy Halloween!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

Wordless Wednesday

5th Wedding Anniversary

On Friday, Ethan and I celebrated our 5th wedding anniversary. Early on, we decided not to exchange gifts for our anniversary. Mostly because we like to travel in September and we consider that our gift to each other. Traveling, going some where new and just being together. This year we are going to Seattle...but we are not going until the end of the month.

We wanted to do something together on the actual day, so we went to the Oakland A's game. We had a great time. I had a hot dog, garlic fries, and a beer. The A's had a great game, shutting out the Angels 8-0. The best part was after the game, they had a fireworks show. It is funny because the only other time I have seen fireworks that were not related to the 4th of July were last year, when we were celebrating our anniversary in Disneyland. There is just something so magical about fire works. I love them. And I love watching them with Ethan. And I love when we can watch them while celebrating such a special day.

The traditional 5th wedding anniversary gift is wood. It symbolizes strength and is long-lasting. While we don't exchange gifts, we are having some major work done around the yard on our trees this Friday. We are having two trees cut down, in which we will end up with the wood for firewood. It is a total coincidence, but I guess we will be giving the traditional gift of wood after all. :)