Making Holiday Memories

I hope everyone had a very Merry Christmas.  I am sad to announce, I was sick over Christmas this year.  It seems I had some type of food poisoning the night of Christmas Eve.  Its hard to say for sure, but I was up in the middle of the night with terrible stomach pains.  They were very intense.  Once things calmed down, I was able to sleep, but my stomach hurt most of Christmas day.  I also didn't feel like eating much and was advised by the on-call doctor to eat a plain diet.  So my Christmas/Birthday dinner was steam veggies and rice.  I was not able to enjoy any of the good food or even my birthday cake.

I was still able to enjoy some time with family, although I really didn't do much besides sit on the couch.  We watched the Bear/Packers game, which was just depressing.  I am feeling better now and even eating again.  This is also not the first time I have been sick on or around Christmas.  In fact, I was sick last Christmas. I hope this is not becoming a new tradition!

Speaking of traditions,  I have been wanting to post some pictures of my Christmas ornaments.  Decorating the tree this year, I realized that they make up so many memories for me. Almost all of my ornaments are gifts, which alone make them special.  Here is a look.

I have ornamanets that are....


older than me and belonged to my mom.
hand-made with love.
collectible and worth money.
not valuable at all, but are worth more to me than any dollar value.
part of a series that I have been collecting for 21 years this year.
from our pop culture like Lucy,  Elvis and Scooby Doo.
glittery snowflakes which are on their own special tree.
representative of who I am as a person.  Lots of dogs and sewing.
in memory of my dog Cocoa, who we lost 10 years ago this year.
special gifts give to us as wedding presents.
from Ethan's collection and represent who he is as a person.  Super heros and skiing.
that my sister and I fought over when we moved out of our parents house.  Mom had to split them up between us.

Replacement Nebulizer

Over the weekend, I celebrated Christmas with Ethan's family at his Grandma's house.  Every year they have a tradition of serving bagna cauda.  This is an Italian dish that is much like fondue in which you cook meat and veggies in a mixture of garlic, anchovies, olive oil, and butter.  Each person makes their own serving and the oil stays hot for most of the party so you can eat as much as you want, when ever you want.  It is actually really good.  Except for one part...the smell. 

It's not really that it smells bad necessarily.  It's that the smell saturates everything in the whole house.  Clothes, shoes, purses, jackets, hair, every possession inside the house.  This smell is a topic of concern and conversation each year.  First there is this big build up to the day...no one can talk about going to Grandma's for Christmas without mentioning the smell of bagna cauda.  There is strategy...only bring items inside which you only really need and leaving everything else in the car.  There is the aftermath...carrying cloths home in plastic bags, showering at the first chance, and of course the complaining about how bad everything smells. 

This is the 11th Christmas Ethan and I will be celebrating together.  And although I have not spent each year at Grandma's, I've been around long enough to know the controversy over this smell.  The build up and worry over the smell is such a big deal, I've actually been under the option that most just take it a little to far.  It kind of gets old year after year, the same comments...just wash your clothes it will be ok.  Well, I thought this way until my experience this year. 

Being a good CFer, I of course took time out of the party for treatments.  I took my nebulizer upstairs, away from the party and the food and the guest to have a little privacy and not have my loud equipment disturbing others.  I did my treatments, washed the cup, packed it up, and went about my business.  The next day, back in my own home, I started doing my treatments and I could actually taste the bagna cauda in the meds.  At first I just thought I would need to sterilize my cup, but then I realized the compressor itself had the smell in it.  IN IT! I could actually smell this stuff in the fan and coming out of the tubing.  After running the machine for about a half hour (not while using it, just letting it run) it still smelled.  I finally realized that the constant comments about the smell were not an exaggeration .  It was really.  I was now too a victim of the bagna cauda. 

I actually had to order a whole new nebulizer.  Luckily, my doctor order the new machine and it was delivered to me the same day.  And with no co-pay.  I was really worried that I would miss a bunch a treatments waiting for a new machine, but the insurance was really responsive.  Even though I have been with my new insurance two years now, I still can't believe how much better it is then what I had before.  Seriously, it probably would of taken three weeks just to get the order approved with my old company.  If there is one positive thing I can say about having CF, it is that my team takes my health and well being very seriously.  For this I am thankful.

Wordless Wednesday-Treatments in Hawaii

Fund Raising Plan

As I announced in a previous blog, I have been selected by the Cystic Fibrosis Foundation-Northern California Chapter to be honored on March 8 for being a leader in our community.  The Foundation has posted information about the event on their website and can be found by clicking the image above. 

Over the last couple of weeks, I have planned out my fund raising plan. Most of my fund raising is going to be centered around living in Sonoma County, also known as Wine Country.  I want to represent this great place I live, so I am going to turn to my local community for support.  I'm starting with a 100 Bottles of Wine Campaign, in which I am looking to local wineries to donate a bottle of wine or two for use as auction items at the event.  I am also trying to put together an package auction item for a Wine Country Get-A-Way, which will hopefully include hotel accommodations, wine tasting, and a around of golf. 

In January I will look to my friends and family to make a donation to my campaign.  In February I am planning on hosting a box lunch sale to my co-workers.  I will team up with a local deli to sell lunch to my co-workers, where a portion of the proceeds will be donated to the Foundation.  I also have some other ideas, but I want to save some surprises for later.  I am really excited about this event!

Introducing San Francisco's Finest

The Northern California Cystic Fibrosis Foundation is putting together a new fundraising event call San Francisco's Finest.  As part of this event, they have selected 20 young professionals in the Bay Area to head up the fundraising for the event and then be honored and recognized that evening. Honorees are nominated based on being a career oriented individuals who display leadership within the community.  I am thrilled to have been selected as an honoree. 

Last night was the kick off meeting for the event.  The CFF staff gave a presentation on the event, including fundraising goals, expectations and available support.  The Board of Directors was there too.  It was very motivational.  On the drive home I came up with tons of fundraising ideas.  I think this is going to be a great event. 

This event will most likely turn into the focus of my blog for the next couple of month, so there will be lots more information in the up coming weeks.

CF Clinic

Last Thursday I had my quarterly CF clinic appointment.  I can't believe how fast time goes in between appointments.  I went into this appointment at the tail end of a cold...which included a bad cough.  I wasn't sure how things would go at this appointment.  My PFTs were all over the place compared to last visit.  My FVC was down 12%, my FEV1 down 2%, but my F25-75 was up 20%.  My F25-75 (which looks at the function of small airways, at least that is how it has been explained to me) has always been low.  Last May, my F25-75  was at 55.6 %, the lowest measurement I have ever recorded.  Now I am at 89.1%.  I am confident this has a direct relation to using hypertonic saline.  I have been using HTS for 7 months.  Ever since day 1 of this treatment, it has been an effective form of mucus clearance.  I could always tell it was removing deep mucus, that no other form of treatment has been able to touch.  It has been removing junk that I didn't even know was there.  And the proof is in the numbers. 

My fall appointment also marks my annual blood work.  I need to find a morning where I can have 20 tubes of blood drawn and sit for 2 hours for a glucose tolerance test. 

We also discussed my previous sputum culture.  I grew all kinds of bugs this time: aspergillus fumigatus, phoma, pseudomonas aeruginosa, and mycobacterium abscessus.  No staph, for whatever reason.  This is the first time I have cultured mycobacterium abscessus.  The doctor explained that m. abscessus is a water mycobacterium and is hard to avoid.  It can be introduced into the body just by taking a hot shower.  I have another culture being analyzed.  If I grow the bug again, I am going to go for a CT scan to see if there is any evidence of the mycobacterium causing disease in the lungs.  Otherwise, we will just continue to monitor PFTs and general health without an aggressive action plan. 

As for my cold/cough, it has pretty much cleared up on its own and I am feeling much better. 

Happy Halloween

Workout Wednesday-Morning Workouts

Workout Wednesday is back...for a special edition to discuss morning verses evening exercise.  Generally speaking, I workout in the evenings, with the exception of my water aerobics class, which is Saturday mornings.  I feel my best working out in the 4:00 to 5:30 time range.  Its right after work, so it is easy to get there.  It is before dinner, so I am not too hungry while exercising.  And I seem to have a good amount of energy at that time of the day. 

Over the past couple of weeks, I had to workout in the mornings in order to fit exercising into my schedule.  It is a hard adjustment, although there are some nice benefits to working out in the morning.  First, I get the responsibility completely out of the way.  It is really nice to get off from work and have the whole evening to myself (minus treatments).  Second, I can watch the sunrise while I workout.  It makes for a pretty nice view.  I also enjoy working out in the mornings because it is a great way to start the day.  The energy feels good and continues through out the day. 

The biggest struggle I have with exercising in the morning is eating breakfast.  If I workout on an empty stomach, I really struggle with having the energy to get in a good workout.  But if I eat prior to exercising, I feel too full and it upsets my stomach.  I am trying different types of energy bars to see what works best.  I like the Luna Bars that are high in protein.  They seem to provide the proper nutrients for the right balance of energy, but are not filling. 

Another minor set back to morning workouts is having to take all my stuff to the gym to get ready for work.  Its a lot to remember and a lot to lug around.  I have been successful so far at packing the night before, so I am not rushing around in the morning trying to remember everything while I am half asleep. 

For now I am going to stick with my usual evening routine, although I am finding morning workouts are not impossible. 

Recovering from a Fever

Last week, I had a 36 hour fever...and the prescription was not more cow bell.  The fever started on Monday afternoon while I was at work.   At first I thought I was just tired.  But after about an hour, I realized something was not right.  I took my temperature and it was about 100.  I took three advil and within an hour of that, my fever spiked to 102. 

I was nervous about the fever being the only symptom.  Was this a sign of a bacterial infection, as opposed to a virus?  I call the advice nurse, who transferred me to an on-call doctor.  I really don't like talking to a non-CF doctor, but this doctor did the best she could.  She sent me for blood work and a chest x-ray.  She also prescribed a anti-biotic, just in case. 

The next day, in the later evening, my fever broke.  It is amazing how 3 degrees difference in body temperature can make me feel so horrible.  In addition to being sick, Ethan was away on a business trip.  I had to try and take care of myself, the dogs, and the house with no help.  Uggg. 

Even though the fever was only 36 hours, it took nearly five days to really recover.  I had little energy, felt dizzy if I got up too fast, and had very little appetite.  I certainly was not exercising.  I am thankful I am feeling better now.  I am also thankful the fever seemed to be viral and not a serious bacterial infection. 

Fall, October and Zombies

Fall is here and October is just a few short days away. This weekend I am planning on decorating for Halloween, one of my favorite holidays.

Last November, I posted a craft blog about a zombie cross stitch project that I was starting.  I wanted to complete 9 cross stitch pattern and put them together in a wall-hanging by THIS Halloween.  I have been working really hard and officially finished the 9th project this week.  After the decorations are set out, I am going to work on the wall hanging next.  It really should not take long, so I am hoping to have it done by next weekend.

I actually found cross stitching to be a great craft.  I have never done it before.  It was easy to learn (I taught myself) and never frustrating.  I found it to be very relaxing and comforting.  It does not require a lot of energy and I could just sit on the couch at night and work on my project.  But it requires just enough concentration, it helped take my mind off of stress or anxiety in my life.  I am already thinking of ideas for my next project.

Here is a look at my Zombies!

These are not my original designs. I used an instruction book to create these crafts. These are scans of my finished project.  If you own the rights to these designs and don't like that they are posted, please tell me and I will remove this post.  If you are interested in creating these Zombie craft, please purchase the book...don't copy them from my blog.  It is simply titled Zombie Cross-Stitch.  Thank you.

CF Chef

I came across a website that I have not seen before called CF Chef.  It is an online resource for nutritional guidelines for people with CF.  They also have a few recipes online.  Although right now there are only four recipes, there is a promise for more recipes coming soon.  They are also having a CF recipe contest, which looks like fun! They are seeking for recipes used by the CF community to stay healthy.  Recipes will be judged on nutritional value, taste, creativity, appearance, ease of preparation and the story behind the recipe. Entries are due September 28.  Winners will be featured on the website and the recipe will be included in a 2011 CF Chef Cookbook.  I know a lot of CFers out there who love to cook and eat healthy, so why not share you favorite recipe? Good luck.

My Hawaiian Vacation

From September 9 through the 16, I was on Maui, in Hawaii.  We had a lovely trip.  The weather was perfect, the food was great, and we had good company too.  I spent many peaceful mornings on the beach, drinking coffee, swimming, and snorkeling.  Most afternoons, we would sip Mai Tais during happy hour and catch the sun set. I avoided getting sunburned.  The only bad parts of the trip was my back hurting most mornings due to a really hard bed and seeing a still-born baby dolphin.  The mother was circling the baby trying to revive it. Horrible.

Here is a list of the good memories I will keep for this trip.

Beaches

Happy Hour

Luau

Maui Tropical Plantation

Ali'i Kula Lavender Gardens

Grand Wailea Spa Grande Massage

Snorkeling at Molokini and Turtle Town

Yummy Desserts

Sun Sets

Platypus Plus Bottle

I found a new water bottle, which I am actually really excited about.  It is called the platypus plus bottle. It is a flexible plastic bottle (BPA free) which, when empty, will be completely flat.  It is great for traveling because it takes up very little space and does not weight much at all.  I am leaving for Hawaii on Friday and this will be a great resource for the trip.  I can easily fill it up before boarding the plane, take it to the beach, the fitness center, and just have it with me to stay hydrated.  I also like this water bottle because the water tastes really good and does not have a plastic-y taste to it. 

CF Clinic Update

I guess I found something to blog about....

Last week was my quarterly CF Clinic.  It was a great visit with really good PFTs.  They were up slightly from last time, but still at my baseline.  Small airways were down slightly, but still much improved since I started my new treatments.  I did a sputum culture prior to the visit, which was nice because we were able to discuss the results.  I continue to grow Pseudomonas aeruginosa, but did not culture staphylococcus aureus.  We discussed why that might be and the doctor guessed it was probably due to the sample, but I most likely still will culture this bug in the future.  We also discovered a new mycobacterium, chelonae.  There is no treatment plan in place because of my high pfts, but it will be something we will monitor.  This bacteria is common is soil and water and is common among those with joint infections, including scoliosis...which I have.  I don't really understand the connection between growing this bacteria and joint disease, so I am going to ask about this at the next  clinic appointment.

I also met the new social worker.  She is great and I was happy to meet her.  She provided me with some information on CF resources and we talked for almost 45 minutes about various themes occurring in my life right now.  I think she will be a great addition to my CF team.

I am also happy to report my sinuses have been A + since Christmas.  I had a few minor problems, but nothing like I was experiencing over the past couple of years.  I am so thankful for my new ENT!

Traveling with a Chronic Illness

I recently spent a week in the Chicago area for a family vacation.  Traveling can be complicated with having a chronic illness.  Not just from the perspective of all the extra medication and equipment I have to travel with, but also from the perspective of how traveling affects my illness.  On the way home from this trip, I couldn't help but reflect on all the different aspects vacation can have on my health and well being.  Here are some thoughts, some specifically related to this last trip.

1. The weather- the hot and humid conditions of the mid-west right now where unfamiliar and uncomfortable. The humidity felt like it added a weight to my chest.  I wouldn't say it was hard to breathe, but it just felt different...like I had a weight on my chest or something.  Also, due to the heat I had to pay extra attention to drinking water to keep from dehydrating.

2. Sinuses-on the flip side, my sinuses did really good in the Chicago weather.  I'm guessing the extra moisture in the air kept my nasal passageways moist and hydrated.  Within 12 hours of being home, my sinuses returned to being dry and stuffy.

3. Diet- I have the worst diet while in Chicago: beef sandwiches, ribs, pizza, burgers, and hot dogs.  I feel like all we do is eat while we are there.  The food is so good it seems worth it.  But at the same time, I never get the nutrition my body needs while I am there and I notice a difference in the way I feel.

4. Exercise- I usually do good with at least trying to walk a couple times while on vacation.  But I actually thought the weather conditions made it dangerous to exercise outside, so I didn't do much the whole week...unless you count playing Corn Holes.

5. Traveling with Medications- I have not encountered problems traveling with medications, except the hassle of having extra stuff to tow along.  I learned that TSA like to for the nebulizer to be out of the bag for x-ray inspection.  Otherwise, its pretty easy to take everything along.  I always carry on my medication too.  I have a fear of my checked bags being lost.  Which has happened to me three times. 

6. Treatments- I have been compliant with treatments while on vacation.  I find doing everything in the morning helps, that way its out of the way and I can just enjoy the day without thinking about it.  I do not, however, travel with the VEST.  At this point in my life, it is not worth lugging around.  I do the VEST to be compliant with doctor recommendations...but I don't really think it makes a huge difference with my health.  So I just give myself the break while traveling. 

7. Sleep- I love all the extra sleep I get while on vacation.  During this trip, there where some days when I had to set the alarm and get up early, but for the most part I was getting around 9 to 10 hours of sleep a night.  And I felt great!  I didn't feel tired at all this trip.  Didn't even take a nap.  But after being home for 24 hours, I went right back into feeling like a zombie by 7 pm after working and going to the gym. 

8. Germs- Airports and airplanes are dirty and germy.  I am always paranoid that I will end up sick while on vacation due to the exposure to germs while traveling.  This trip went great, no illness.  Not even post vacation. 

A Note About Responsibilities

As an adult, life is full of responsibilities. At times, I feel like responsibilities consume my life.   For me, I spend time doing the things I need to do first and the things I like to do second.  Most days, I don't even finish the things I need to do.  I can't keep up.  And I can't find balance.  As a result, my days are packed full of trying to fulfill responsibilities, taking care of myself, my home, my husband, and my pets.  In the end I have little time for hobbies and being social.  Here is an example of my typical week:

Monday through Friday: I get up, get ready for work, and try to be at work by 7:30.  After work, I head straight to the gym where I try to get in a good 45-60 minute workout.  Go home, make and eat dinner with Ethan.  I try to find about 30 minutes to wind down by reading, watching part of a baseball game or work on cross stitch.  After which, I have treatments, which take about 45 minutes all together.  Once treatments are over, it is about 8 o'clock.  All I have the energy for is to read or watch TV before going to bed around 9:30.  Usually I am so tired by then, staying up until 9:30 can be a challenge.

Saturday: I sleep maybe an hour later than the weekend, but still get up early so I can have a quite morning with coffee, reading or watching baseball highlights from the previous evening.  Off to water aerobics at 10, usually getting home around 11:30.  Make lunch.  Go to the grocery store and prepare food for the week like cutting up fruits and planning meals for the week.  I usually finish this around 4.  Do treatments next, followed by making or eating dinner.  All the while trying to get laundry done, straighten up the house, run errands, and do all the things I need to do on the weekends that I can't get to on the weekdays. 

Sunday: Sunday is my general do nothing day...which rarely ever happens.  I don't go to the gym and I try to get all my chores done on Saturday, so Sunday can be limited to cooking dinner and treatments.  BUT...if we have plans to be away from home on a Saturday, all my Saturday stuff defaults to Sunday.  Giving me very little time to myself on the weekends.  For example in August we have plans every. single. Saturday.  There won't be much time to myself. 

Thus, I am usually left feeling like I never have enough time to complete my responsibilities and still have enough time to relax, do fun stuff, and be social.  Any alteration to my schedule leaves me feeling overwhelmed.  It's so hard to be spontaneous. The hard part is it is hard to make time with friends unless it is scheduled well in advanced.  This helps me adjust my schedule around to accommodate those plans.   And for the most part, I don't think people understand this.  Yes, as adults we are all busy.  But as a CFer, I can't compromise my well being for a social life.  Treatments and exercise are a must in my life.  During the week, I'm not left with much else.  I don't think a lot of people really understand life with CF.  But having friends is also important, so I try very hard to include being social as part of my life. 

I think this is why vacations are such an important part of life.  Yes, they are fun and exciting, but there are not much responsibilities while on vacation.  There are still treatments, and exercise is a little different, but the rest is relaxing.  I would not survive with out my vacations.  That is why I take like 5 a year. :)

Top 10 Movies About Summer

After a freak rain storm last week, temperatures have been in the 90's and I would say summer is officially here in Northern California.  I have a little tradition that takes place on the first really hot day of summer...I watch the movie Weekend at Bernies.  I don't know why I started this, but I have been doing it for years.  Actually, I only watch this movie in the summer time and it is usually retired around the end of September.  It sounds silly, but it's fun to have the tradition and it makes watching the movie special. 

After watching Weekend at Bernies a couple weeks ago as we "welcomed" 100 degree heat, Ethan and I got to discussing other fun movies to watch in the summer time.  So, I decided to come up with a top 10 list for summer movies.  The basis for this list is the movie has to take place in the summer time or represent the summer in some way: last day of school, summer vacation, summer camp, etc.

10. Stand By Me
9. Can't Hardly Wait
8. Meatballs
7. Now & Then
6. Sisterhood of the Traveling Pants
5. The Parent Trap
4. What About Bob?
3. Superbad
2. One Crazy Summer
1. Weekend at Berines

Happy summer. 

CF Clinic-Physical Exam

I recently needed a routine physical as part of the adoption application.  After realizing my primary care physician was on extended leave, I asked my CF doctor if this was something she could do for me, even though I don't have clinic again until July.  The last thing I wanted was to go to a general doctor I have never met.  I really needed the physical performed by someone who understands my health status, so it could be well explained on the application form.  My CF doctor was more than happy to help. 

My appointment was on June 17.  The actual exam was performed by a resident, but then my doctor popped in at the end to chat.  We did PFTs, which were down about 5%, but still within my normal range.  However, my small airways went from like 41% to 70%.  I am sure that has been my highest recording since the 90's.  I am positive this is a result from the hypertonic saline.  So that was exciting to see, even though the rest of my numbers where slightly down.  After discussing PFTs and how I have been feeling, the CF doctor decided to consider this a clinic appointment.  Otherwise I would of been back next month. She was pleased with my status and asked me to schedule clinic in 3 months. 

Saying Goodbye

This month, I had to say goodbye to two members of my CF team.  The first was Amy, the Event Coordinator of our local Cystic Fibrosis Foundation Chapter.  Amy lead our Santa Rosa Great Strides Walk.  She was excellent at connecting with the community, providing motivation, and just being so supportive of the mission.  Amy decided to leave the Foundation to continue on with her eduction.  I will miss having Amy at Great Strides, but I wish her luck with her new goals. 

The second team member was my clinic's social worker, known as Mrs. Wonderful.  I really connected with this person last year during my IV treatments.  She really helped me deal with the emotions associated with having a chronic illness.  Since then we have had many conversations about various topics, most not even CF related.  Mrs. Wonderful was always willing to talk with me.  I didn't have to wait for clinic to talk with her.  We talked on the phone a lot.  She even met with me once when I was at the hospital for an appointment with the ENT.  She was such a wonderful component of my team.  She completely went above and beyond her job expectation.  I am thankful to have had her be apart of my team. 

Saying goodbye to these women got me thinking.  Having CF, I will always be connected to this community.  I will always need a team to take care of me.  But those on the team are connected to CF by means of a job.  A noble profession, of course, but never-the-less, they are getting paid to be apart of the CF community.  They have the choice to be apart of this community.  I don't get that same choice.  I guess it is just a realization that my CF team can change, even when don't want it too. 

First IV Antibiotic Treatment- One Year Later

It was one year ago today that I received my first PICC and started my first antibiotic treatment.  The treatment was intended to target my sinuses, but it made me realize my lungs needed a little tune up too. Although the treatment was only mildly successful for my sinuses, the treatment really cleared up my lungs.  I didn't even realize my lungs needed help...or could be helped.  After the IVs, my cough was minimal, I stopped clearing my throat and I just felt clear.  Most of all, this treatment made me a stronger person and an even stronger CFer.  I feel like I know my symptoms better, I can communicate better with my doctors and I feel like I have a better gauge when I need antibiotics.  Its not to say I have not had my share of lung problems in the last year, but my recovery from each exacerbation seems to put me back to that post-IV feeling of being clear.  I'm working hard at trying to keep it that way with Vest, HTS, and pulmozyme.  

This experience also made me feel more connected to the CF community.  So many people offered their support during this time.  It was during this time I connected with two special people in my life Josh and Stacey.  Josh offered support, a prep-talk prior to my PICC placement, advice, and listened to my worries. A stranger helping a stranger.  This sparked a very special friendship, which has grown into so much more than "just" CF.  Love you buddy.  This was also the time I met Stacey, my Soul Cyster.  We learned about each other through Josh.  We had so much in common, it wasn't even funny...including both having PICCs for the first time within a week of each other.  Some how it was a little easier knowing someone else was experiencing the same stuff as me.  Stacey, I am still amazed at all the things we have in common.

Hypertonic Saline-Eight Weeks Later

Eight weeks ago I started an Albuterol/Hypertonic Saline treatment. I have to say, I love HTS. It seems to be the most productive treatment in my line up right now. Every treatment facilitates a productive cough. My lungs have been feeling really clear, I'm hardly coughing. I'm not even really having to clear my throat. It is a harsh treatment and it is uncomfortable to administrate, but the benefits really out weight the side effects of this treatment.


Using this treatment has put aspects of my disease into perspective for me. I realize just because I have normal lung function, doesn't mean that I don't need these treatments. I think my last doctor put so much emphasize on PFT numbers, he stopped listening to my needs. I went for years thinking that being congested was just part of having CF. Which it is...but there are tools out there to help. I just think this was being overlooked because of my overall health. I am thankful my new doctor is more proactive and is helping me find the right combination with maximum benefit.

Crafty Update-Gift Boxes

I have been working on some new craft project over the past couple of months.  I found an easy pattern to make fabric covered boxes.  This project is easy and no sew.  This box is created by fusing fabric to poster board, cutting out the pattern, folding and gluing.  I made this box to use as a gift box for a bridal shower gift.  There is also a pattern for a wine bottle box and a Chinese food carton. 

Triathlon Work Out....Done!

Yes, I completed my triathlon work out this past week.  I really enjoyed this work out.  First, it was a great way to change up my usual routine.  It was also nice to have a very specific focus each day, it really helped me to give it my best and accomplish my goals.  The most challenging part of the work out was 60 minutes on the bike.  I was not really prepared for sitting on a bike seat for 60 minutes.  Not exactly comfortable.  Swimming was also a challenge. I don't lap swim often, so it really got my heart racing fast in a short amount of time.  I did need to stop for a water break about every ten laps. I tried to keep my breaks to about 15 seconds.  Also, I didn't do any walking on the treadmill, which really helped from keeping things from getting too boring.  Here is the breakdown:

Day 1: Friday May 20- 4.0 mile walk around spring lake.  Total time: 66 minutes.

Day 2: Monday May 23-17.3 mile bike ride (in the gym).  Total time: 60 minutes.

Day 3: Tuesday May 24-1600 yard swim.  That is 64 laps.  Total time: 38 minutes.

Day 4: Thursday May 26-2.2 mile walk (34 minutes) and 7.6 mile bike ride (24 minutes).  Total time: 58 minutes.

The whole challenge took me 218 minutes...my goal way 210!  So close! But at least now I have a baseline. For me, exercise is never about being fast.  I am really focused on just being active.  I would and will do this workout again, but not on a regular basis.  I did miss the elliptical during this week.  And I still snuck in my water aerobics class too.   One day I wold like to set a goal to do the whole challenge in one day, but I don't think that is something I am up for right now.  I think the next time, I might try to see what I can finish in three days and build my way up to completing the challenge in one day.  Thanks to everyone for the support with this work out.

How Does My Garden Grow?

Ethan works hard to keep up the garden and landscaping in our yard.  Our yard is fully landscaped and does not get a lot of direct sun, so getting the right plants and veggies to grow can be challenging.  Each year, Ethan adds a little something to change things up and add a little more than we had the previous year.  This year, we are trying to add more color to our landscaping and he built a strawberry garden. He has been keeping a potted garden with veggies and herbs.  Last year he built a raised garden in the front yard, because this area gets great sunshine all day long.

Overview of Backyard

Strawberry Garden-New for 2011

Veggie and Herb Garden

Raised Garden-Front Yard

New Flowers-Perennials like Lavender and Princess Lily

Delphinium

 My Personal Gardener! 

Work Out Wednesday-Triathlon Work Out Challenge

To switch up my work outs, I have decided to challenge myself to a triathlon.  Not in the sense where I complete a triathlon in a single day, but try to complete a triathlon during the course of week through swimming, running walking, and biking as part of my regular work out.  Each day, I will either swim, bike, or walk (remember, I am not a runner!) and log the total distance until I complete a full triathlon. I got this idea from my parents, who did something similar a few years ago. 

There are lots of types of triathlons out there, which combine different criteria for each event.  This includes the Ironman, Sprint, Olympic, Half and Full.  I am going to start with the Olympic.  The breakdown:

Swim: 1600 yards (64 laps in a 25 yard pool)
Bike: 24.9 miles
Walk: 6.2 miles

Goals:

To complete the challenge in one week.
To complete 60 minutes of exercise per day until the challenge is met. I normally exercise for about 45 minutes a day, so I am setting a goal to do an extra 15 minutes each day. 
Log the date, distance, a time each activity takes. 
Write a blog about the experience.

I am guessing it will take me about 3.5 hours to complete this challenge.  I figure I can bike the total distance in about an hour, swim the total distance in about an hour, and walk the total distance in about 1.5 hours.  It will be interesting to see if I can keep the same pace for the whole hour each day, or if I will lose all of my stamina with the extra 15 minutes.  Also, swimming 64 laps will get boring, fast.  I hope I can push through to reach my goal. 

The challenge starts next week. 

Vest Upgrade

My first Vest system came to me in 1996, shortly after I was diagnosed with CF.  I received Hill Rom's Vest Model 103.  My insurance would not pay for it at the time, so Hill Rom actually gave the system to me for free.  Recently, I was discussing treatments with my social worker and she suggested I try to upgrade my system, since I had one of the older models.  I decided to look into it just to see what my options are.  Well, because I have newer insurance, they have technically not purchased a Vest for me, so a new system was authorized with no co-pay.  I decided to take advantage and upgrade.  I now have model 105.  The new system has so many advantages including:

Size- the machine is about 2/3 the size of the old one.

Weight- New machine weighs less than the old one, making it much more portable.

The new machine is digital, opposed to the knobs on the old machine.

The new machine is programmable, making it easier to switch frequency and pressure. 

The new machine has a "pause" function making it way easier to pause treatments to cough. 

No more foot pedal, the new machine just goes on its own.

I am very thankful I was able to upgrade, especially with no co-pay. 

May is CF Awareness Month

May marks CF awareness month.  In an effort to spread CF awareness, I am going to be posting little facts about daily life with CF on my Facebook No Two Snowflakes Are Alike Page.  In addition to facts about CF, I am also going to post information on resources that also promote CF awareness like various people, organizations, and other awesome stuff.  I hope others can join me in participating in spreading CF awareness.  Check out my page, "like" it and share it too! And check back at my page frequently for updates!

Radio Spot

On Monday, I was on a local radio talk show to promote our upcoming Great Strides Walk and talk about life with CF.  A local woman who is a grandma to a grandson with CF works for a local radio station, KSRO 1350.  I guess for a few years now she has been setting up air time for people in the CF community to go on the air to promote the cause.  Another mother to two children with CF (her kids are now in their twenties) was scheduled to talk, but she didn't want to go on the air alone.  I had met this person at my Chevy's fundraiser.  She remembered me and contacted the Foundation to contact me and see if I wanted to participate.  I said yes without hesitation. 

I arrived at the radio station a little early, so they gave me a tour of the studios.  Four different stations are broadcast from this location.  It was fun to see the operations of these studios.  Just before our air time, the DJ Steve Jaxson came out and spoke to us for like 2 seconds.  I know he does this as his daily job, but there was apart of me that wanted to rehearse the whole show first so I would know what to expect.  I started getting nervous...what am I getting myself into?  What if I got on the air and totally froze? Everyone assured me that I would do fine.  The DJ would keep things going and give prompts on what to talk about.  Everything would come naturally.  Which is basically what happened.  Once I got talking, it was no different from just having a conversation with someone about my life with CF.  The fact that a whole group of people I couldn't see were listening to me never really crossed me mind.  It is really an easy way to practice public speaking skills because you can't see the audience. 

Although I was able to talk about a lot of good, informative information, the interview ended and I felt like I had so much more to say.  I had a great time and I hope to be able to do something like that again in the future.

Hypertonic Saline 7%-Day 1

Yesterday I started a new treatment to my routine: albuterol and hypertonic saline, both nebulized. The first hurdle with this treatment was actually getting the saline solution.  When I went to the pharmacy to pick it up, my prescription had been canceled.  As the pharmacist explained it to me, he simply thought the prescription was a mistake (?) and did not fill the order.  After explaining that yes I need the saline solution, I was then told it was not a medication that was in stock and it would have to be ordered.  Thanks Mr. Pharmacist for not only canceling the order, but also not having the medication even available just on the chance that I really needed it.  I was finally able to pick up my prescription Tuesday.

I've had nebulized albuterol before.  It usually makes my heat beat increase, but I didn't notice that last night.  The hypertonic saline is a pretty intense treatment.  It instantly irritated my throat, almost like a mild burring sensation.  It triggered a cough almost instantly.  It was a productive cough and I could immediately see the benefit of this treatment.  No noticeable side effects at this point.  Looking forward to seeing my reaction over the next couple of days to see if the results continue to be so noticeable. 

CF in the Community-Frank's Walk

My CF Clinic puts out a quarterly newsletter about various CF topics.  The most recent letter included an interview with a young man named Cody Frank, who is about to embark on an incredible journey. Cody, who has CF, is going to be hiking the Pacific Crest Trail.  This trail starts near the California-Mexico border and ends near the Washington-Canada border.  The trail is 2650 miles long and Cody anticipates walking about 25 miles a day.  A picture of the trail is provided below. 

Cody is dedicating this walk to his sister Jessie, who lost her life due to CF in 2009.  He will be carrying her ashes on the hike, a promise he made to her as her life was coming to an end.  The hike starts in 11 days.  Please show your support to Cody.  You can like is facebook page, follow his blog, donate in support of his effort, or check is webpage from time to time to see the progress of his hike.  If anything, please share his story.  I'd like to see full support of the CF community behind Cody and his hike. 

CF Clinic Update

Friday was my quarterly clinic visit.  I was not positive this was going to be a great visit. About a month ago, I had started a Cipro treatment after having difficulties on vacation.  I did a three week treatment and felt 95% better when my treatment ended.  About a week later, I started to feel run down, like I was getting a cold.  Since then my nose has been stuffy and I have been coughing more.  Only having a week off of Cipro before coughing more had me on alert...usually I get a good three to four months before needing to evaluate the need for antibiotics.  But a week?  Not good. 

PFTs, however, where telling a different story.  I had my highest FVC ever and my second highest FEV1.  My FEF 25-75 was the lowest ever, which I always test a lower number in this category.  In fact, this number varied by nearly 20% just from doing three different tests.  My doctors thoughts:

• She explained that the numbers are only one line of evidence for managing care and she considers much more when thinking about treatments.
• Her dilemma with me is whether to treat my symptoms with antibiotics or not.
• She was not concerned with the low 25-75 number. 
• We talked a lot about why the numbers can be great, but not really "matching" my symptoms.  I know I am allergic to grass, so there may be an allergy component to my symptoms. 
• We decided to go a more conservative route to treat this set of symptoms.  I am going to start hypertonic saline and albuterol.  I am going to give it a trail run and check in again at next clinic to see if this helps with my symptoms. 

After the visit, I head over to Union Square in San Francisco for dinner and shopping.  I found great tops at H&M! My favorite.

The Sights and Sounds of a Comic Book Convention

April 1-3 was our annual weekend trip to San Francisco for WonderCon, a three day convention of all things geeky.  My husband is a huge comic book reader...he reads about 40 books a month and usually spends about $75-$90 a month on books.  Although I am not a comic reader, I do enjoy the convention.  It is so much more than comic books.  There is art, promos for new movies and tv shows, costumes, cartoons, games, and a variety of retailers. 

Here is my top ten list of the things I did last weekend in San Francisco:

10.  I met Cindy Morgan, who played Lacey Underall in Caddyshack.  She was super nice!
9.    I saw a promo for Cowboy's and Aliens, a new movie direct by Jon Faverau.  Mr. Faverau was there to talk about the movie.  He was really funny!
8.    I will buy almost anything with a dog on it.  I found three prints with cute dogs this year.  Now I just need to figure out where to display them.

7.    A company called "Kaboom" is a kids comic book company.  They publish comics based on pixar characters, like Car, Toy Story and Monsters Inc. and they have a huge line of Muppet comics.  I was so excited to find they were having a 2 for 1 sale.  I purchased four trades: Toy Story, Monsters Inc., Muppet Snow White, and Muppet Sherlock Holmes.
6.   Speaking of Kaboom, Travis Hill, Kaboom artist was there to draw personalized sketches for a small fee.  He drew me a sketch of Mr. and Mrs. Potato Head from Toy Story.
5.    I love the costumes at this convention.  It is fun to see the creative costumes people come dressed up in.  This year I dressed up as Princess Leia.  The funnest part about dressing up is walking to the convention from the hotel.  It is funny to watch the reaction of people.  Classic!


4.    I bought a limited edition Peanuts comic book.  Only 100 available and only being sold at the convention.  I received #97.
3.    Ethan has connected with a lot of other comic geeks in the area.  They are a great group of people and a lot of fun to hang out with us. And the best part about hanging out this year...I was not the only female!
2.    I loved drinking a huge latte in my Princess Leia costume.


AND

1.   I found a company that was selling plush internal organs including LUNGS! I was so excited! This company called i heart guts sells all kinds of organs including hearts, kidneys, etc. I am keeping my lungs in my treatment area to keep me company.  I love them!

The Truth About CF and Having Children

I started this blog to share information about my life with Cystic Fibrosis.  I have tried to be as honest as I can with every aspect of the disease and how it affects my life.  This blog has really been a place for me to reflect on my disease, in addition to sharing information with others.  There has been one topic, however, that has previously been off-limits: having children.  I was never really comfortable discussing the topic out here in the open.  But, I have decided to take the step forward to share the whole truth about my life with CF. 

Having CF and making a decision about having children is complicated.  I have so much more to consider than the average person.  Pregnancy can cause complications with CF, including increased infections during pregnancy.  The options for treatment are limited while pregnant. Am I willing to risk not being treated for an infection while pregnant? Am I willing to risk the long-term consequences this will have on my lungs? Am I willing to pass this gene on to my offspring? Am I willing to risk having an child with CF?  Once the child is born, will I be able to continue all of my treatments, including exercise, while taking care of a baby?  At what point will I be to sick to care of a child? Its a lot to take on. 

On top of all of this, CF can cause complications with being able to conceive.  So, even if I could find answers to all of the questions above and feel completely confident about having a baby, CF may have the final say.  Which I have learned to be true for me.  The honest truth, I cannot have children because of this disease. 

There are a lot of options out there for women and men with CF who want to have children.  There are various forms of fertility treatments and options that have helped a lot of CF women or CF wives conceive children and have successful pregnancies.  Ethan and I discussed every option under the sun.  Fertility treatments are not the right fit for us. 

But not hope is lost.  Yes, I have officially declared I cannot have children naturally.  I am comfortable with this.  And honestly, it feels good just to admit it and move on.  There is no more disappointment.  The good news is, Ethan and I have decided to pursue adoption.  We are in the very early stages and it will be a very long road, but we are excited at the opportunity to become parents.  Our wish right now is for a toddler in need of a good, safe and loving home. 

I am not planning on writing much about our adoption journey on this blog.  In the future I may decided to e-mail interested friends and family updates from time to time.  But for right now, we are just going through the application, interviews, home study, and a class.  We won't be approved for adoption until the later part of the year.  So until then, there won't be that much to update. 

Cystic Fibrosis Lifestyle Foundation

I recently learned about another non-profit in support of the CF comminuty, the Cystic Fibrosis Lifestyle Foundation. This group is centered around keeping people with Cystic Fibosis active.  They promote the importance of exercise for those with CF, along with providing education resources to keep people with CF educated on the disease.  The CFLF also has a grant to help provide financial assistance towards participating in recreational activities.  They will award up to $500 to apply to costs associated with exercise and staying active.  Visit http://www.cflf.org/ for more information. 

New CF Resources

I am the type of person that needs to know ALL of my options before making a decision.  If I need scrapbook paper, I have to look at every single piece for sale before I pick the right piece for my project.  If I need new shoes, I have to look at every pair...sometimes in several different stores...before making a decision.  If we are trying to find a place to eat, I need to know every restaurant in the area before selecting a dining option (even when I am really hungry).  It's the same with CF.  I want to know about every treatment, medication, non-profit organization, book, fundraiser, forum, and website related to CF.  I just want all of the information available so I can:

 1. Be super educated on the disease and
 2. Know what is available to make good decisions about my health.

I just want to know all of my options.

Recently, I discovered a few new resources for people with CF.  My first reaction: how did I not know about these options before!?  Why didn't my doctors talk to me about this!? What else is out there that I don't know about!?  Just in case there is anyone else out there wanting to know all the options or to just be better educated, here are some of my discoveries.

1. First there is Quick Clean Micro-Stream Bags by Medela.  These bags are designed for cleaning breatspumps for nursing mothers.  But these also work great for disinfecting  nebulizer cups.  Pop your disassembled cup in the bag, along with 2 oz. of water and microwave for 3 minutes. Super easy and the bag can be reused up to 20 times.

2. Vitamins specifically for people with CF, by Source CF.  This is a multivitamin with high doses of A, B, D, E and K.  Now I am sure most doctors don't promote this vitamin because any regular multivitamin is beneficial.  I love these vitamins, however,  because they are soft gels and easier to swallow then the regular vitamins.  This is big for me.  I have trouble with swallowing those big pills sometimes. 

3. N-acetylcysteine (NAC).  NAC is associated with supporting a health immune system, good lung function, and has anti-inflammation properties.  These is no strong evidence to suggest that people with CF can benefit from NAC.  However, some people with CF take this medication and have shown benefit.  I found a product called PharmaNAC, an effervescent dietary supplement containing NAC.  This is available without a prescription.  I do not take NAC.  But I am going to talk to my doctor about it to see what her opinion is.  

4. I know someone that has a portable nebulizer.  Do I need to say anything else about how awesome it would be to own a portable nebulizer? 

***I am not a doctor, nor am I trained in the medical field in any way.  I am just one person with CF who wants to be educated and share information.  I am not suggesting or recommending any of these products.  Only your doctor can do that.***