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


>

Bainbridge Island



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



Woodland Park Zoo



Pub Tour