Amazing new drug, devastating cost!

Kalydeco drug for CF mutation G155D shows promising results but the cost is astronomical.

ALOHA MAUI!!

Return of the BLOG...ALOHA MAUI!! - PART 1

In August 2012, my man and I visited Maui for the last time and January 4^th, 2013, we made Maui our new home.

35th Birthday at Flatbread Paia

The decision to move to Maui was based on several island vacations over the last 12 years in which I felt positive changes in my physical and mental health.  I visited Maui several times and Jamaica as well and found that the temperature, sunshine, salty air, and slower lifestyle of the islands were positive factors in my health.  Stepping off of the plane into the warm air immediately put my muscles at ease and calmed my mind.  It was like a natural sedative.  The more time I spent the better I would feel.  January 2012 I decided it was time to make a long-term commitment and find out which factors were truly helping and which were “vacation” relaxation.

ALL PACKED UP!

VOG Day

Cane burning

The 3 possibly negative factors about Maui were the absence of care for Cystic Fibrosis, VOG, and sugar cane burning.  I wasn’t too concerned about a CF specialist because I hardly went to the Western Dr. in California.  I focused my healing on natural remedies, holistic health care and Chinese medicine.  If I did have some major issues, I figured I could always see a pulmonologist and go from there.  The VOG is basically volcanic air pollution that stems from the Big Islands Madam Pele. The volcano sends sulfur dioxide into the air, which reacts with other gases, moisture, dust and sunlight to form VOG.  “VOG exposure reduces the bodies natural abilities to expel toxins.”  The sugar cane burning is of most concern to the residents, which can create or exacerbate respiratory issues like asthma.  I’d experienced the air changes from the burning but not in the long term.  I was willing to take the chance to find out.

Unlike people imagine, we don’t live on the beach and watch palm trees sway in our front yard or spend all of our time surfing, although we should!  We live UPCOUNTRY!  Upcountry is a lifestyle as well as a part of Maui that is covered in lush green farmland with horses, chickens, goats, a plethora of bright colored birds and the occasional peacock.  We live on a large plantation property in Makawao about 20 minutes to the beach in Paia.It’s truly magical but not the traditional image of Maui. 

Makawao Estate

Living upcountry means we are in a completely separate micro-climate than that of the beach towns of West side Lahaina, South Kihei or East side Hana.  Makawao sits between 2000 and 4000 feet on the West side of Haleakala overlooking the ocean on both sides of the isthmus with views of the sugar cane fields, north shore and the West Maui mountains.  Although it is cooler and rains more often, we chose this area for it’s non-city culture and country lifestyle.  Lucky for us, I have friends in “high” places on the mountain who were able to hook us up with a beautiful home!

FRESH FROM MAUI.....

Candy Apple Red.....

Budget Rental car says they are out of compact cars and decides I'd look better in a candy apple red mustang!  OK!!!  Looks may be deceiving considering this car can GO, but damn is it uncomfortable!  I bashed my knee first thing into to steering wheel and what's with the funky seat adjustments?  This  thing has 4 seats but it is a 2 seater!  Wish I still had my 89'.

35th Birthday Lunch Desert...YUM!!

Tommy Bahama's makes nice clothes but their lunch is AMAZING!!  I'd have taken a picture of the food but I devoured it in seconds!!!  Desert on the house!!

24 hours in Honolulu

28 minute flight, 90 minute lunch, 2 hour nap, 6 hours at the club, 2 hour nap, 3 hours paddle board....and back to the airport...

3 hour delay for a 28 minute flight from Honolulu to Maui

CF Fundraiser Cut-A-Thon at Glow Spa Salon, Oakland CA July 1, 2012

387 Grand Ave, Oakland, CA 94610

Cut-A-Thon

Sunday, July 1st 10am-2pm

Haircuts $25! Add on a Blow Out for $20!

100% of proceeds go towards life saving research for the

Cystic Fibrosis Foundation / www.cff.org

What Is Cystic Fibrosis?

Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that:

         • clogs the lungs and leads to life-threatening lung infections; and

         • obstructs the pancreas and stops natural enzymes from helping                   the body break down and absorb food.

In the 1950s, few children with cystic fibrosis lived to attend elementary school. Today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF.

Event Details: Appointments can be made in person or by calling

(510) 452-GLOW, with pre-payment of cash, check, debit or credit.  Please make checks payable to Glow Spa & Salon. Walk-ins welcome!

Mail or drop off in-kind donations to:

Glow Spa & Salon 387 Grand Ave, Oakland, CA 94610. (510) 452-GLOW

A receipt for your donation will be provided.

Nail, massage, and skin care services are available the day of the event. 

Please book online www.glowspasalon.net

| Adding tomorrows every day.

Because of risks to people with cystic fibrosis (CF), individuals who have had a confirmed positive sputum culture for Burkholderia cepacia (B. cepacia) complex shall not attend this event. This is because B. cepacia can be passed between individuals who have CF through close proximity. B. cepacia infection in a person with CF can cause serious respiratory illness and, in some patients, may lead to death. Despite this policy, there might still be some individuals with B. cepacia in attendance. B. cepacia is not a risk for otherwise healthy individuals. For alternative ways to participate and for information about this policy, please contact the CF Foundation at (800) FIGHT-CF or visit www.cff.org. Consult your CF care center physician with medical questions.

Lack of posting...updates

WOW, it's been since March since I blogged.  Yikes.  I  have a lot of catching up to do but I just want to post a couple articles I just read.

http://www.sciencedaily.com/releases/2012/05/120527115543.htm

http://www.sciencedaily.com/releases/2012/05/120524092750.htm