Wednesday, September 29, 2010

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.

Tuesday, September 28, 2010

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.

Saturday, September 25, 2010


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 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.

Wednesday, September 22, 2010

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.


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

Monday, September 20, 2010

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.

Thursday, September 16, 2010


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?

Wednesday, September 15, 2010

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

Wednesday, September 8, 2010

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

Monday, September 6, 2010

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. :)

Friday, September 3, 2010


During my last clinic visit, my doctor and I discussed being more pro-active with treatments, including Pulmozyme or Hypertonic Saline. She didn't seem to think I needed both, but that I should use one or the other to keep my "post-IV" lungs clear. My treatment ended nearly two months ago and my lungs still feel really clear. I discussed using Pulmozyme and HTS with my previous doctor and his response was "let's save that for when you lose lung function." New doctor is taking a way more pro-active approach, which I am thankful for.

I decided to go with a trial run of Pulmozyme. On Monday I ordered new tubing and mouth piece for my nebulizer. Later in the afternoon, I received a phone call to schedule the delivery of my new nebulizer...the whole package, including a new compressor. I have no idea why, but the insurance authorized a whole new nebulizing system. And with no co-pay. So, now I have two compressors. Although it seems nice to have a back-up or one that I could even take to work, I am hoping to donate my older model to someone less fortunate than me. If you know anyone that could benefit from a new compressor, let me know.

Yesterday, I started my first dose. I was excited to find the treatment only took about 5 minutes. I was disappointed to find the prescription was written for 2 treatments a day. Working full time it is really hard to fit in treatments in the morning, especially when trying to balance out getting enough sleep. But with the treatment taking such a short amount of time, it should be no dig long as I remember! I am feeling very motivated however, so I am hoping this is not a problem. I feel so lucky to have this treatment available to me and at little out-of-pocket cost. I would be disappointed in myself to have all this available to me and then not use it.

Thursday, September 2, 2010

Your Vote Can Help Babies with Cystic Fibrosis

You can help the CF Foundation win $250,000 for CF research. The CFF is participating in the Pepsi Refresh Project. Each month Pepsi awards over $1 million is grants to worthy causes, chosen by votes. The CFF is competing for a $250,000 grant to fund a clinical study about the effects of hypertonic saline treatments on infants. Hypertonic saline, an inhaled saltwater treatment that reduced lung infections and hospitalizations for adults and children with CF. Now we need to study this treatment for newborn use. Hypertonic saline, if proven effective in this research study, would given infants with CF a better chance at a long, happy and healthier life.

I have posted a button on my blog with a link to vote to support this grant. You can vote once a day though the end of September, so vote today and vote often. Please feel free to pass the word on.

Wordless Wednesday