By my side

How cute are my babies... they just lay right next to the treadmill and patiently wait for me to finish. Their favorite part of my workout is when I do sit ups and push ups. They think its wrestle mania time. After I get them to relax they lay right next to me again. The best sit ups are when you have a pug on your belly really works those abs ;)

***My calendar has 14 stars on it for the month of August!***

DUH!!!

Ok so Im sitting in bed inhaling my TOBI and it's taking forever and I thought I would read blogs well I was getting all caught up and leaving comments left and right.

Aspiemom I was welcoming you back home and commenting on your ouch on your pic. Then proceeded to tell you you have my thoughts and prayers for a speedy recovery.

Cara I commented on how beautiful you looked at the ball and what a great time it looked like and congratulated you on your winning table.

Sara I was agreeing with your feelings...

I could keep going, then I noticed I wasn't signed in... Are you kidding me!!! DUH!! I was even typing in the secret words and everything just forgot to sign in! Got to love a good blonde moment :)

Can't wait

To start my new book :)

Next time I am in NYC I am going to have to visit Pug hill in Central Park. Can't wait!!

KREATIV

I received this award from FRAU she is a really good friend who moved to Germanya lil over a year ago. Her blog cracks me up with all her German shenanigans. She has a great outlook on her new adventure and grows from every opportunity. She has a great fam and a cute baby pup named Sophie, not to mention she's within walking distance of Kinder eggs ;)

Here are the rules for the award:

1. Thank the person who nominated you for this award.


2. Copy the logo and place it on your blog.


3. Link to the person who nominated you for this award.


4. Name 7 things about yourself that people might find interesting.

5. Nominate 7 Kreativ Bloggers.

6. Post links to the 7 blogs you nominate.


7. Leave a comment on each of the blogs letting them know they have been nominated.

Hmmm, 7 Interesting things about me that you don't already know....

~I love candy!!! But I hate Chocolate! Some of my favorites are Swedish fish, sour patch kids, Red Vines, Mambas, Now & Laters, Starburst. I could keep going mmmm

~I have a butterfly tattoo on my R ankle. I got it when I was 17 with my mom for my Grams. I want another one real bad ASAP!

~I have been to Euro Disney. My favorite thing was the Alice in Wonderland maze.

~I was a cheerleader my Senior year in high school

~I got to go to Madonnas friends and family concert in LA 2006

~I use to Dive when I was lil and I can still do an inward off the low and high dive

~I failed my driving test the first time I took it, but passed the written. For my Motor cycle license I failed the written but passed the driving with a 100!

Ok I Nominate...

~Ronnie

~Piper

~Sharlie

~65 Roses for Marcia

~Will and Will's fam

~Aspiemom

~Niki36

The Moon

Thank you guys for all your words of encouragement!

They say if you reach for the stars you may be lucky and land on the moon... Well a 42 was me reaching for the stars... I landed on the moon with a 34. I am still maintaining since March of 08 so I am pretty lucky!

I had a crackle which I usually am very clear so I will go back in a month. I just started TOBI on Fri and am pretty sure its moving all sorts of stuff around, hence the crackle.

I'm off to put another star on my calendar...

Visualizing a...

PFT's tomorrow...

Thoughts on Thursday

We can't do great things in this life . . .

We can only do small things with great love.

-- Mother Theresa

Workout Wednesday

I've been bit by the work out bug...

So far so good. I decided that if I didn't have such a lofty goal I could attain it better. I got bit Aug 1st and my goal was to work out 30 min of cardio 3 days a week. I can do more if I want but I have to do 3 days for sure. Sounds silly but every day I complete that I get to put a star on my calendar. Well I have 12 stars :) Interesting this worked for me as a kid on different charts, looks like it still works. I have also been mixing in my Tracy Anderson doing the abs and arm workouts and also pushups.

Some of my accomplishments have been;

*Walking at 3.0 on a incline of 5 for 2 intervals

*10 pushups

*My Tracy DVD was collecting dust and after popping it in I completed the whole arm series

*mixing in a 3.5 for a couple of intervals

No running yet but I honestly can't remember the last time I did. I am on 4 liters when I work out I haven't checked my pulse ox while doing this. Perhaps maybe I should, to see if I can lower to 2 to 3 liters but I feel the more o2 pumping through the body the better.

Best thing since sliced bread

I usually shave the babies but I didn't in July and I haven't yet in Aug, I have been using the FURminator. It is AMAZING!! Oscar loves it which is funny because it is usually hard to get him to try anything new, and it really works... Lilly doesn't mind it but it is not her favorite. However, she doesn't shed as much as Osc and her coat is a bit shorter. I think I will go back to shaving them in Sept. I chose not to since they are in the sun so much and shaving them increases their risk of skin cancer and Lills doesn't need anything to increase her risk.

If your looking for a good doggy brush this is the one throw out all the others after you get this there's no going back.

The FURminator Medium deShedding Tool (2.65” wide deShedding edge)

Reduces shedding up to 90 percent by removing the loose, dead undercoat without damaging the topcoat

This tool is recommended for medium dogs and cats.

• Guaranteed to reduce shedding better than any brush, comb or rake

• Works great on all shedding, long and short-haired dogs and cats

• Brings out the pet’s natural oils, promoting healthier skin and a shiny topcoat

• Reduces the amount of airborne elements that cause allergic reactions in many people

The PEP mask

Ok so a lot of people have been asking what the PEP mask is so I thought I would tell you a lil about it...

The Positive Expiratory Pressure (PEP) mask is another alternative to airway clearance, and I love it!! I was first introduced to it in the early 90's but then I think the flutter came out then the vest so the PEP mask kind of was forgotten about cause we had moved on to bigger and better, right?

Well in March of 08 when I was in the joint the RTs tried to get me to do the mask instead of my usual "Somer Genics" (which is active cycle and autogenic drainage mixed, I may have to post on that later) But I thought t was ridiculous that they would want to re invent an old version of airway clearance. So I continued that stay with CPT, Somer Genics and Thera PEP when I was being discharged my PFT's were a 36 not where I wanted them, again shooting for a 42. So the RT came in and asked if I wanted to take a PEP mask home, well I really want to blow a 42 so I finally succomb to the 90's version of airway clearance. Since that day in March of 08 I have used it 2 to 3 times a day. I do it for about 15 min or until there is no more crap coming up. So the PEP mask is another thing that I started doing after my last admit. Let me remind you I am 17 months on parole and counting. Which is crazy since before March of 08 I was in every 2 to 3 months for the 2 week stay.

Here is a more clinical description of the PEP mask...

The PEP mask consists of a rubber mask which is connected to a one-way breathing valve and tube adaptor, which creates resistance. The patient presses the mask against his/her face and slowly inhales through the inspiratory port and then exhales against the expiratory resistance. The PEP mask keeps the airways open allowing mucus to be secreted. The PEP mask theory has been related to a bottle of ketchup. A new bottle of ketchup turned upside down and pounded on doesn't move much ketchup out of the bottle; but as soon as a knife is put in the bottle, the ketchup flows freely. The idea is that once there is air in the bottle, the air helps push the ketchup. With the PEP mask, the valves allow the airways to stay open longer causing air to help push out the secretions. It takes some training to learn how to use the PEP mask, and the mask has different size valves that can be used to fit the specific needs of each patient. The mask is done without the aid of another person. The patient is actively involved with this type of therapy, and it takes much discipline to comply with this therapy regimen.

She turns 51 today!

HaPpY BiRtHdAy Madge!!!!

New Cystas and Fibros

Well I know I have some new Cystas and Fibros following my blog since I last posted my CF about me so I thought I would re post it. If you haven't done one of these or if you don't have a blog I encourage you to do both. I have found some amazing friendships thru this blog and am so very blessed to have such a great support system that I haven't met. Xo

~I was diagnosed with CF when I was 11 months old on a hunch. My mom read a newspaper article that said “kiss your baby disease” If your child tastes salty get them in for a sweat test to see if they have CF. So she licked my bro and I and I guess I tasted salty. She called my pediatrician and told him she wanted me to come in for a sweat test. He assured her I didn’t have it, I was a very chunky baby and there is no CF in my family history. But she insisted and so he did it and called her the next day crying. The docs told my parents I wouldn’t live to be 10 and from that moment on my two fabulous parents chose to fight my disease and when I was old enough I joined the fight. Look at those cheeks :)

~My parents started the CF Chapter here in SLC after my diagnosis and I was a poster child for many years and attended many functions in the community to help raise money for a Cure. You can read more of my story and see photos of these events at www.lovetobreathe.com a web site that my bro put together for me.

~ I was first hospitalized when I was 7 and I didn’t start enzymes until then either. This is a pic of me in the joint for the first time

~ My lil bro was adopted. My parents always wanted 3 kids but they didn’t want to chance having another Cfer. The pic below is the day we got Shelby

~I went to CF camp when I was younger for only 2 or 3 years my mom didn’t think it was very sanitary (smart lady) However I met some amazing people and we have lasting friendships.

~After my first hospital stay I began to do Ivs at home once a year until I was 10 then I started going into the hospital for a yearly tune up. I would usually go in around Christmas break so I wouldn’t miss much of school since not everyone knew I had CF growing up. When I graduated high school I started to talk more openly about CF. When I was growing up I just didn’t want people being sympathetic and never wanted to be the “sick girl” To this day when someone gives me The head tilt, you know the one it is just a lil irritating.

~I danced growing up and was in a performing company we traveled many places to perform including Japan. I did ballet, tap, jazz, hip hop, and modern. I stopped dancing with my dance company my senior year in high school so I could be a cheerleader.

~I went to private school all my life so when I went to college for my first year it was hard to be a # rather than Somer. The college was 2 hours away from my home. I moved back after the first year and continued my career at Nordstrom and worked my way to management. I managed Kids shoes, Jewelry and Savvy.

~ Went to Primary Childrens Hospital until I was 22 I was the oldest patient then I finally transitioned to the University of Utah the Adult CF Center.

~Every time I go into the joint My mom chooses a theme and gets decorations and my parents decorate my room for me. It’s a different theme every time. Unless I am in around a holiday it is decorated from floor to ceiling you can see some pics on my website. The two below were from last March. I took my tap shoes to the joint, they made pulmonary rehab more fun :)

~I had a hard time with piccs year after year and finally after forming blood clots in my arms and being on coumadin on 2 different occasions. I got my “Thipple” in 2005. Many of you may know that as a port but I call it my “Thipple” for third nipple. I SO wish I would of gotten it sooner but it seemed so permanent. I flush it once a month and don't mind it at all. When I first got it I was a lil self cautious about it. I have had many people say some interesting things about it. Once when I first got it I was in Vegas with some girlfriends and I wore a low shirt so it was clearly showing it was my first time with a thipplicious shirt on and my friends assured me you could hardly see it. So we went downstairs and I noticed we forgot the camera so I opted to go get it and I was in the elevator with 4 guys all of a sudden I hear a guy scream "OMG what the hell is that" I was mortified right when I was about to answer the doors opened to my floor so I replied back "thats what happens when you go to a third world country and get a boob job" and I kept walking I didn't even look back. I told my friends they were liars :)

~I went to a chiropractor in 2005 and they found a kidney stone the size of a large gumball by accident. I had to have surgery to remove some of it and break the rest up so I could pass it thru a stent I never felt a thing not even passing the rest of the stones.

~I stopped working at Nordstrom in Dec of 2005 after continuing to get really sick. I was admitted when my FEV1 hit 22.

~ I am very involved in the CF community and try to raise awareness whenever I can. I sit on the Heroes of Hope Panel a fabulous program by Genentech (makers of Pulmozyme) I sit on the board of directors with my local chapter and I send my paintings to different fundraisers around the US. I was in the TOBI calendar for 2008 and helped the Boomer Esiason Foundation out with a campaign with Jiffy Lube last year.

~When my bro got prego with Makena Tammy had to be tested to see if she was a carrier and she was not. However my bros blood test came back showing 2 negative genes (which would mean you have CF) So they actually wanted him to go up to Primarys and get another sweat test it came back negative so it turns out one of his negative genes is mutated so with that mutated gene it makes him only a only a carrier. So my doc thinks I may have 3 or more CF genes. Which is very rare! The pic below is Shane getting his sweat test a lil over 3 years ago

~ 2006 I was in the joint 5 times 2007 6 times and 2008 twice all for 2-3 weeks at a time. I am happy to report the last time I was admitted was March 3 2008 almost one year ago. I am not sure I remember the last time I was out for a whole year. In April 08 I started back up on USANA and also got on the aztreonam early access study.

~ The meds I am on are albuterol (3 times a day) ,pulmozyme (twice a day),Tobi, (every other month)Aztreonam (on my off tobi months), Pulmicor 1mg (In the am)advair (twice a day),pancrease MT 16 4-5 with meals 0-3 depending on the snack azythromiacin (daily) Nexium (in the am) AllegraD (in the am) Vitamin C 500mg (3 times a day) USANA(proflavonal 90, hepasil, coquene 30, Essentials) am and pm) nasalcort (twice a day) During flu and cold season I drink 1 to 2 emergen c’s a day I also drink apple cider vinegar and I have a nose and throat spray that I use pretty regularly they are made by Seagate and I get them at the health store. I drink wheat grass when I can and just try to have a healthy diet. The last oral glucose tolerence test after I drank that drink my blood sugars were in the 40s so they said I was hypoglycemic which I guess is borderline CFRD not sure that whole thing is confusing to me. My airway clearance consists of somergenicsJ a mix of auto genic and other breathing techniques and I use the pep mask 3 times a day I got it after last March and I love IT! I thought why would I use that it is so 10 years ago but I really love it!!! I wear o2 at night and when I work out. I work out on the treadmill and I walk my dogs when its nice. I just started the Tracy Anderson Method and I love it she is Madonnas trainer! Well I think that about wraps it up for my health regime.

I have the old vest but I rarely use it I prefer pounding which I only have done when I am in the joint...

My daily cocktail

~My Last BLOW (PFT) was on Mon My FEV1 was 34 and I am hoping that I will hit a 40 after the next time I receive IV antibiotics. I keep visualizing it.

~ I have been blogging for almost a year now I started at the end of March. I am so thankful I did, I have been reconnected with some fabulous friends and I have found some amazing Cysters. The bond I have with my Cysters I tell ya it is something I can’t quite describe! I have two brothers and I think I know now why I never had any sisters.

~If I could change one thing in my life.... I would opt toNOT change a single thing! I believe I was given this life because I am strong enough to live it! I am SO VERYblessed to have such an AMAZING support system my family and friends mean the world to me!!!!!!

So there you have it my CF About Me I am sure I have left some things out but this is what sticks out in my mind. CF is just ONE of the MANY things that makes me who I am and for that I am grateful!

A great opprotunity

Live CF Web Cast

Topic:
Successfully Managing Your CF As An Adult

Host:
Dr. Marcia Katz with her patient Casey Flaherty and her mother Paula Flaherty

Date and Time:
August 27, 2009 8:00 PM EST

Learn how to handle the difficult transition from teen to young adulthood and get your questions answered live.

Click here to sign up I strongly encourage anyone to sign up for this, Dr Marcia Katz is absolutely AMAZING!!!!!

Merlot Nasal Cleanse

Geez I have been having a rough time lately, first the grout then the tree. Well then last night I had a glass of wine and I can't remember if I coughed or if it went down the wrong pipe, all I know is it went down wrong and came back up out my nose. It was an awful experience, I couldn't breathe for 5 sec. Believe me 5 sec when the twins already have a hard time with the whole CO2 and O2 exchange seems like an eternity. So I made some weird nose ran to the sink and started splashing water on my face and blowing bubbles in the water with my nose. My dad ran over to me thinking something was terribly wrong and then had to chuckle when he realized I was just being my dramatic self. I blew my nose and it was purple. My glass of wine had floaters in it. I know TMI but it really cleared my passages :)

Then I am sitting out on my patio and I have been getting bit by mosquitos lately. So I got some citronella candles. Well I am not a candle expert, and when I saw 2 mosquitos come close to me I picked up the candle to have them get a whif and my right pointer finger was right on the glass where the wick was. Needless to say I burnt my entire finger tip pad, I don't think I have a finger print on that finger anymore. Of course its a glass candle and my first instinct was to drop it well I couldn't, not wanting to break the candle or the table I just spent hours on. So I carefully placed it down as my finger was melting. I ran inside and poured soy sauce over my burn. Soy sauce is suppose to take the sting out, I learned that in Taiwan. It seemed to work but it was pretty sore, burns are so horrible. Well today my finger is numb it almost has a callous over it probably cause I wash my hands 345,098 times a day and I don't believe in lotion. So I basically just burnt dead skin... you know that feeling when you get super glue on your fingers that's what it feels like, like a poured super glue all over my tip of my finger... very bizarre!

Good news tho... today is a new day and I am hoping after all that my stars and planets are going to start agreeing with each other again!

Wed is a BIG day Granny Love turns 100!! She is the cutest, feistiest lil thing.

The Babies are so good when I sit on my front porch they just chillax right there with me. I am training them and they are both doing such a good job with it, it's a lil harder for lills tho. They sit at the top of the stairs and look out its so cute!

Wind,500lb limb and grout...

OH MY!!!!

So grouting is the hardest task I have ever done, well maybe not the hardest but definitely the messiest!!! What a day I had on Wed. I grouted my table and managed to get the grout ALL over my front porch tears were shed in fear that my front porch was ruined. I called OJ (my mom's BF) trying to figure out how to clean off grout well he came to my rescue. Then my mom came over and we were all working on getting the table finished when I was stricken with heat stroke. Note to self do not grout and work in 98 degree weather in the direct sun. So I had to go inside with ice packs drank saltwater and gatorade. The table is done and my porch isn't ruined ;)

Then had some guys cutting down trees in the property behind me and I thought how great if they could get this limb off this dead tree, that is destined to fall the next wind storm. So I showed the guy the tree and the barely there limb he said it wouldn't fall and if it did it would just fall on the empty property so not to worry. Well we had a short burst of wind come thru sure enough that night and *SNAP* goes the 500 lb limb right onto my fence and into my yard. Good thing it didn't fall on my babies are knock down my fence. It did break the fence a bit but OJ fixed it pretty good.

All grouted

That spot on the top was where

This branch use to be

Calling All Germ A Phobes

Upcoming Web Cast

"Germs and the Impact on the Health of People with CF" A Live Virtual CF Education Day Web Cast Tuesday, August 11, 2009 8:00 p.m. ET (7 p.m. CT, 6 p.m. MT, 5 p.m. PT) Click here to register

Join us this summer for a Virtual CF Education Day Web cast to learn about germs that affect people with CF and how to avoid them. The discussion will include the basic principles of infection control and information about B. cepacia, Pseudomonas, MRSA, and influenza. It is important to know and use the basic principles of infection control and prevent the spread of germs in the lives of people with CF. The three-part Web cast will feature:

• John LiPuma, MD, Professor of Pediatric Infectious Diseases and Epidemiology at the University of Michigan
  
  
• Lisa Saiman, MD, MPH, Professor of Clinical Pediatrics at Columbia University and NY Presbyterian Hospital
  

About this Web Cast Series

Produced by the Cystic Fibrosis Foundation, this innovative series of Web casts brings the cystic fibrosis community together in a “Virtual CF Education Day” forum to learn from the experts about living with CF and the latest in CF research.

Each Web cast features different members of the CF healthcare team, or experts in CF research, from across the United States.

The Web cast forum offers an opportunity for questions from the CF community to be answered. This educational tool helps to empower people with CF, families and friends to take an active part in CF care through increased knowledge about the research and the highest quality care.

YIKES....

Voluntary Recall of simplySmart Remove Make Up Remover by Celeste Industries July 28, 2009 Celeste Industries Corporation has voluntarily recalled all lots of simplySmart "Remove" Make Up Remover. The product is not sold in the retail market but is provided as a guest amenity at Holiday Inn Express® hotels in the United States and in Canada. It is packaged as a single towelette with hiexpress.com shown on the packet. The recall was a result of certain limited lots testing positive for Pseudomonas aeruginosa bacteria. The organism Pseudomonas aeruginosa may cause serious eye infections, respiratory infections, dermatitis, soft tissue infections, bacteremia, and a variety of systemic infections, particularly in patients who are immunosuppressed. Any hotel guests who may have taken the product are advised to not use the product and to destroy it immediately. Consumers who have used the product and have any concerns should contact a healthcare professional. Consumers with questions regarding the recall should contact Celeste Industries Corporation at (410) 822-6200, ext. 1349 between 8:00 a.m. and 5:00 p.m. EST and ask for Quality Assurance or e-mail at recall@celestecorp.com. This recall is being made in cooperation with the Food and Drug Administration.