Friday, February 26, 2010

Not a fan


of Garlic....

I never eat it.

I can't stand the smell or the taste!

However while pulling out all the stops trying to get rid of my cold/sinus whatever I have. I started taking a garlic supplement it's 650 mg once a day. It acts as a natural antibiotic that you never build resistance to, so I am giving it a go. They used it back in the day to cure everything from the common cold to the plague. So far I think it is doing some great things I'm not sure yet, but my mucus seems thinner and my cold/sinus thing is well on its way out the door. If not gone completely just don't want to jinx myself.

Since I am not a fan of garlic and I hardly ever consume it my body is probably not use to it which might make it work that much better? Kind of like when you haven't been on IV antibiotics in a long time and then you get on them and bam, they are instantly working their magic.

I have TOBI voice... Sexy? Manly? everyone has their different take ;)

Does anyone else take garlic pills?

Thursday, February 25, 2010

Hero of the month



On Nov 16th I had the pleasure of interviewing Jan White she is truly amazing and a hero to so many. I am so glad I had this opportunity to get to know her she inspires me in so many ways...

Janice White, or Jan to those that know her best, is a 48-year-old woman living with the chronic illness, cystic fibrosis (CF), a disease in which the median lifespan is 37 years. Through her selfless service to others and enduring positive outlook and attitude, Jan inspires all those whose lives she touches. We recently talked to Jan to learn a little bit more about this amazing Hero of Hope.

Jan, what are some interesting things about you?

I have a Masters of Education in Speech Language Pathology and have worked for many years in this field, including with people who suffer from brain injuries and with the elderly living in long-term care facilities. Due to infection control issues, I no longer work with patients and now work for the state of North Carolina, where I help ensure that governmental policies are going to best benefit these patient populations.

Can you tell us a little bit about your experience with CF?

In terms of CF, my story is actually very different than most as I was not diagnosed until I was nine years old. My older sister was misdiagnosed for three years, and her eventual diagnosis became the catalyst for my being tested. Sadly, she passed away at the age of 17. None of my three older siblings have CF, though one of my brothers is a carrier.

In 2003, a new chapter opened up for me and I received a life-changing double lung transplant. In January, I will celebrate my seventh anniversary with my lungs!

How has your CF health routine changed since your transplant?

Before my transplant, a typical day included nebulizer treatments and chest percussive therapies multiple times a day, many medications and an exercise regimen. Since the transplant, I still focus on being compliant to my health routine, but the improvement in my health has allowed me to make some adjustments. I now take daily transplant medications and maintain my exercise program, which is a big part of my life. I work out at the gym regularly, but I also like to take walks with my dogs to keep exercise fun. Listening to my body and my doctor is also imperative, and I take the time for rest and relaxation when needed.

Your service to others is exceptional. Please tell us about some of the organizations you are involved in.

I work with the Carolina Donor Services, a procurement agency on the east coast, and the Sweet Melissa Fund, an organization at the University of North Carolina which raises money for transplant patients. I also help with fundraising for the Brain Injury Association of North Carolina, and lately have become active with the Amyotrophic Lateral Sclerosis (ALS) Association, an organization dear to my heart as a close friend was recently diagnosed.

With a full workload, social life and the need to take care of your own health, how do you find the time to squeeze everything in?

As a post-transplant patient, it is very important for me to give back to the CF community and to other people in need. Now that I have the energy, I want to use it to help those that don't have the same luxury.

What is the motto you live by?

When my sister passed away, I was in the hospital chapel where a placard on the wall read, "Never put a question mark where God has put a period." Those words resonated with me, and ever since then I try not to question what I have been given. It's not always easy, but it is a good form to work toward.

Click HERE to read more about Jan and hear her podcast

Click HERE to nominate your Hero

Wednesday, February 24, 2010

TOBI Time!


Well it's that time again.... Time to add TOBI into the mix. TOBI is an inhaled antibiotic that is used 28 days on and 28 days off, it helps keep pseudo at bay. I am so lucky that I am still able to use this it does make me bronchospasm a bit so some times I will use it 2 weeks on 2 weeks off. When I am not on TOBI I am on Aztreonam the drug that was finally passed earlier this week.

For those of us that are on TOBI know to prepare for long treatments, it can take anywhere from 30 -45 min... I have 4 inhaled meds in the am and 3 in the pm so it can make for long treatment times. I use this time to catch up on e mails, Face book , Blogging, Perez Hilton, basically its my time to be on the world wide web, I also like to get some reading in.


Here is Baby D doing her TOBI she is such a lil trooper! I remember when I was lil I could just fall fast asleep as soon as I started getting pounded.
What do you do during your treatments?

Tuesday, February 23, 2010

Finally...

CF Foundation Plays Important Role in Bringing New Inhaled Antibiotic Cayston® to Patients

February 22, 2010

I have been on Aztreonam now since about June of 08 I was part of the early release program and I ABSOLUTELY love it! It's nebulized 3x a day with the E flow and takes about 3 min. You do it on your off months from TOBI. I really feel like it's made a difference in my life and I am excited for it to help the rest of you!

U.S. Food and Drug Administration approved an important new inhaled antibiotic called Cayston® (aztreonam for inhalation solution) today for the treatment of cystic fibrosis (CF). The drug was made possible by significant support from the Cystic Fibrosis Foundation, including a $1 million investment by a Foundation subsidiary to help develop the therapy.

Developed by Gilead Sciences, Inc., Cayston offers a much-needed antibiotic alternative for CF patients who battle recurrent lung infections and develop resistance to existing antibiotics. Lung infections are the leading cause of death in CF.

Cayston is the first CF drug to advance — from beginning to end — through the Cystic Fibrosis Foundation’s Therapeutics Development Program, which is designed to speed the creation of new CF therapies. In addition, Cystic Fibrosis Services, Inc, a wholly owned subsidiary of the Foundation, will be one of only several pharmacies in the country distributing the drug.

Cayston will be available by the end of next week.

“The approval of Cayston demonstrates that our drug development model is working and making a real difference in the lives of people with cystic fibrosis,” said Robert J. Beall, Ph.D. president and CEO of the Cystic Fibrosis Foundation. “We are delighted to have a new antibiotic in the arsenal to help fight the life-threatening infections associated with this disease, as we continue to push forward with other therapies that address the underlying cause of CF.”

The Foundation supported Cayston at each stage of development, from providing an initial therapeutics development award, to making the Foundation’s clinical trials network available to test the drug in patients, to advocating with the FDA for the drug’s approval.

“The Cystic Fibrosis Foundation’s early funding and ongoing support for Cayston played an important role in bringing this new therapy to patients,” said Bruce Montgomery, M.D., senior vice president, head of Respiratory Therapeutics, Gilead Sciences. “We are thrilled to help meet an urgent medical need for CF patients, and to support the Foundation’s mission to improve the lives of people with this terrible disease.”

Cayston is administered with a new device called Altera that allows patients to take the medicine in less than five minutes, a fraction of the time required for other inhaled antibiotics. This shortened delivery time reduces the burden on patients, who — on average — have a treatment regimen of three to four hours per day.

Patients interested in learning more about Cayston should consult their physicians.


Monday, February 22, 2010

Christmas In Feb

This weekend I received the most amazing gift... It was like Christmas in Feb! It was the gift of water.

Your thinking water?!? What is so great about water? Well let me tell you it's not just any water it's FIJI water! My absolute favorite bottled water, that I drink on special occasions or if I am lucky enough to get it when I am in the joint.
You know when you are grocery shopping and you want to buy a lil treat or something extra to splurge on? Well FIJI is my treat. This Artisan water is untouched by man until you drink it... It doesn't get any better than that! I am so excited to drink all my bottles and I don't think I will be sharing. So if you come over and I am drinking FIJI and you are drinking arrowhead don't take it personally ;)

Saturday, February 20, 2010

Prime Real Estate


Location, Location, Location...

This lil guy has moved in my sinuses and is making himself quite comfortable. UGH!!!

I haven't had a lil something since Nov of 08... Im not to happy! I am trying to stay on top of it so he doesn't feel like expanding his property down into my twins. I feel bad for him, he doesn't stand a chance. He will be evicted in NO time... I am pulling out all the stops!

Have a good weekend everyone! Xo


Thursday, February 18, 2010

If its any consolation...


You are STILL an AMAZING friend and a FABULOUS Coffee pal!

When you are HERE...

I'll be HERE...


Or HERE...



This reminded me of your post...
Love ya Kath!!! Xo

Tuesday, February 16, 2010

Lung Flute Update...

Ok Ronnie here is your video.... It's really hard to video yourself. Could my eyes get any BIGGER? ;)

The Lung Flute reminds me a lot of the Flutter. I would say the Pep mask is still my very favorite tho. I don't like how long the flute takes to dry, but it does work. I use it every other day and I only use it for 1 of my 3 treatments. Its a good change to add to the mix.

Has anyone else tried out the Lung Flute? Would love to know what you thought.


video

Friday, February 12, 2010

Love is ALL around!


I was told by my very wise friend that Love is all Around! Thanks Liss

It is so true, everywhere I look I see love...


I just read Beyond Breathing by Margarete Cassalina CLICK HERE to visit her web site.
I really recommend you get this book, plus 65% of her royalties go directly back to the Cystic Fibrosis Foundation to fund research to find that sought after cure. Remember 99 cents of every dollar donated to the CFF goes directly to research!

So back to reading this amazing book... I started it after dinner one night and the next thing I knew it was 2 am and I was finished and felt like I had gained a new friend! Margarete is SO strong and very inspiring, this book moved me in so many ways. I feel like I already live by so many of the lessons that I took from this book. I guess reading this book just validated my thoughts and confirmed my purpose. (thank you Avenue Q)

Jena is an inspiration! I know that she lived a VERY full life and accomplished so much in her 13 short years here on earth than most people do in a WHOLE lifetime! Jena said "when you can see love you can see me" How smart is that... For those of you that know me know I couldn't agree more with Jena. Love is so many things, and giving all your love and touching as many lives as you can while on this earth is what I think life is all about! Jena's love lives on in all the lives she has touched and all the lives she continues to touch each and every day.

"When you can see Love, You can See Me" Jena Cassalina


Love has also touched my Cyster Eva... She is dying and still has SO much LOVE to give! She posted a video on her blog with such a powerful message to just LOVE! I wish you peace Eva and lots of LOVE! Please say a prayer that she will get a third chance at life, she So deserves it. She is SO strong and isn't done LOVING yet...


I wish you ALL a VERY Happy LOVE day! I hope it is filled with lots of LOVE and so many hugs! Go out and LOVE for Jena and Eva! Xo

Wednesday, February 10, 2010

She's a Genius!

I really want to buy Lilly a snuggie because she loves to burrow under all her blankets and loves to snuggle... so I thought it would be perfect for her. Oscar on the other hand doesn't like to be covered up at all. In the morning I will find Lilly under all 5 of her blankets, snug as a Pug!

This is what she has started to do with her blankets... She's a Genius! I guess I don't need to buy her a snuggie after all... gotta love that pug tail!


video


video

Tuesday, February 9, 2010

add it to the mix


I love trying new airway clearance techniques!

I got my Lung Flute in the mail yesterday...

Good news its dishwasher safe... Phew I am glad it didn't melt when I stuck it in there.

warning
TMI INFO BELOW

I used it for my second treatment yesterday. As I was getting the hang of it what angle to hold it etc. I was moving things around. After I was down I was still getting some stuff out and then I got out a plug that was from way down deep. Judging on the color. The Lung Flute is suppose to work on getting the deepest secretions out, so so far so good... I'll keep you posted.

I am going to try it again today. But one thing I don't like about the Lung flute is it takes forever to dry. So I will probably only use it once a day and continue with my pep mask am and pm.

If you want to read more about the Lung Flute CLICK HERE

Saturday, February 6, 2010

up, up and away!!!




Have you ever just wanted to escape... Carl is such a brave man and a genius! ;)

I watched UP last night and I absolutely LOVED it! It was SO cute and such a great LOVE story! I am a sucker for the LOVE stories...

And how great are the dog collars... I need to get me a pair for Osc and Lills.

"sometimes it's the boring stuff I remember the most"

Russell is SO smart.

It took Mr Fredrickson I while to figure out that the "boring" stuff really was all that mattered to Ellie... All her happiest times were really all the boring times.

I believe... The "boring" stuff is really what makes up this adventure we all call life.
Such a great movie! You really need to see this one... I think I may go watch it again!

I hope you all have a" boring" day! Xo

Friday, February 5, 2010

3 days in a row

Nothing but blue skies!!! So Heidi The babies and I followed suite. To bad you and Roxy live a state away we could be walking together...


video

Yesterday was the third day for our lil jaunts. We just walk up and down the street a couple times and enjoy the fresh air and some much needed natural vitamin D.

After we are done walking I let them run around off leash and take care of business ;)

Today tho its suppose to snow and it will throughout the weekend. But I am ok with that fresh air is PRICELESS!!

Happy Friday Everyone! Xo

Thursday, February 4, 2010

one step closer...

This week, we gained important new ground in our work to advance the development of newcystic fibrosis treatments.

VX-809, a potential CF drug developed by Vertex Pharmaceuticals, showed encouraging results in a preliminary Phase 2a clinical trial.


VX-809 is one of the first investigational drugs aimed at treating the underlying causes of CF.

The oral therapy was tested in patient volunteers who have the most common cystic fibrosis mutation, Delta F508.

Results from the trial showed VX-809 was well-tolerated and, in a subset of CF patients, reduced sweat chloride levels — a key indicator of CF.


VX-809 is the direct result of one of the Foundation’s largest investments in drug development. This gives us confidence that our innovative approach to science leads to progress.


We ALL know money buys science and science buys HOPE!!!!

Wednesday, February 3, 2010

Nice to meet you!

River wasn't exactly to sure of the pugs he would close his eyes when they came up close but then he would get all excited when they started to walk away.... so cute! They are all about giving kisses too! In the mean time Makena just can't get enough of them.

Take 1
video


Take 2
video

Take 3.... and scene!


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Tuesday, February 2, 2010

playdates


They always have so much fun... I am not sure who wears out who first. ;)


video

The Babies LOVE their cousin Makena! They follow her every where and can't get enough of her. It's so sad to see them when she leaves especially Osc he just mopes around. We introduced River to the babies. Ill post that video tomorrow it's too funny!