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!

<>      <>

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!