Please Don't Cut Funding!

Cystic Fibrosis research does not receive as much attention and funding as, say, Cancer or Leukemia.  Currently, States are in the middle of making important program funding decisions that will greatly affect the availability of high-quality, specialized care for CF patients. In addition, several States are proposing changes that will make it even HARDER for CF patients to receive disability when they really need it. On top of those looming possibilities, the government recently approved drastic funding cuts for medical research and drug review. Please let state representatives know that this funding is needed and is very important to someone you know!  Also please take the time to let the Social Security Administration (SSA) know that when CF patients get to a point where the sickness will not allow them to work on a regular basis, disability is important and necessary for CF patients!

As a CF patient, I’m sure that many “sick” people can relate, having the money and INSURANCE to cover necessary medical drugs is extremely important and often a frequent stress factor in life.  Recently while on the CF Pharmacy website, I discovered that the newest drug, Kalydeco, which I am not yet prescribed to take, is almost $31,000 for 60 pills if I didn't have insurance!  My nebulizer medicine is $2,657 for 30 days. Another example is my Pancreaze enzymes which I must take multiple of each time I eat.  That’s $218 per month (give or take). Sometimes, the future seems so unknown when it comes to being able to pay for medicines so I can survive. At least I am fortunate enough to have the opportunity to get medicine if I need it.  Third world countries have a much larger need and it’s hard for them to obtain the necessary medicines.  Worldvision.org multiplies monetary gifts by 10 to help those people in need. (Just thought I’d mention that!).

Well, April is almost over and May is within reach. I’m ready for the sunshine (and exercise!). I’ve been a little sick lately but this weekend it seems to have gotten a little better. Thanks for all the prayers and support.  You are appreciated and loved back!

Spring? Is that really you?

What a wonderful weekend of weather and good times!  All except the part where my car stopped running....apparently it really does mean that you need gas when the dial says so on an old car. : ) I thought you could run those below the red line?  Anyway....

In March, I had an appointment which yielded good results. My breathing test's FEV1 results went up 3% which I can give credit to daily breathing treatments with the Vest System, Pulmozyme nebulizer, and exercising on my elliptical. Hopefully, now I can get outside more with the nice weather. Despite the good test results, the last few weeks I haven't felt the best, but my friend Mucinex has been helping me out.

Thank God for this weather...how refreshing! Have a wonderful week.

It's cold...ready for the heat again!

I made it to New Year’s Eve without getting too sick. Usually I get sick before Thanksgiving! So I did very well this season so far. I’m still dealing with nose stuff and lung stuff, but I’ll take it over anything worse.  I have another doctor appointment in March. Luckily I was able to sing yesterday at church. I had to miss my last scheduled time because I was coughing insanely.  

CF research has been discovering and creating wonderful new treatments for people like me, however, with the medical funding cuts that the government has/is making, improvements for my life and others with CF will be delayed.  The researchers will then have to rely more so on private donations. Please pray cuts stop happening and do your political part and TELL them to stop! This will effect anyone with a medical condition that requires treatments, medicines, etc. 

On another note, just a few days ago we sold our house! Thank God. I much more prefer to have only one house at a time. : )  Thank you for all the prayers and encouragement for that situation.  Also, thank you to all the people who go out of their way to check on me and send me cards of encouragement, etc. That means so much.  It truly does. That unexpected support really helps lift a spirit. I encourage you to make it a goal this week to contact a friend or two who is living with a disease of some kind and encourage them. Just because you can’t SEE their ailments, doesn't mean they don't exist....  ; )   

Have a great week everyone and try to stay warm.  I'm ready for the warm sunshine again!

Winter Time

I recently had a doctors appointment which went well, however my breathing test results (pft) was down another 2%, which I'm not okay with! I've been doing my breathing treatments pretty much everyday, but apparently more exercise is necessary. Winter time is hard for me to exercise. I need to avoid gyms because they carry too many germs for me to be around.

Sunday will be my 29th birthday and Im very grateful to still be breathing on my own and be as healthy as I have been overall. Remember if you are facing a "timeline" given to you by science, its not in charge of your life!

If any one is interested, we still have our house and Camaro for sale. They would make an impressive Christmas gift for that special someone! Haha. Stay safe this Christmas season and enjoy time with family and friends. MERRY CHRISTMAS! Please don't forget the real meaning of Christmas.

Please Act Soon!

In January 2013, Congress is planning on cutting budgets that will affect many people including me that are dependent on medical research and advancements.

It's not just research that is threatened. These cuts will also affect the Food and Drug Administration, the agency that is responsible for the review and approval of new medicines. That could slow the review process for promising new CF drugs.

The good news is that Congress can still prevent these cuts, but they need hear from you.

The clock is ticking: there are only a few more opportunities for Congress to act before the cuts take effect. Tell Washington to protect these important programs and focus on reducing our nation's deficit without jeopardizing our efforts to add tomorrows.

Click here to learn more about how these cuts will affect people with CF

Thank you for speaking out. Your messages, along with those sent by thousands of other CF advocates across the country, make a difference in the mission to find a cure for cystic fibrosis, support access to quality, affordable care and raise awareness of CF.

There’s still more you can do if your fired up!

1. Sign up to receive Advocacy Updates.  

2. Visit the Take Action page to send messages on additional federal and state alerts.

3. Donate Today to support the efforts of the Cystic Fibrosis Foundation.