Our old CF Commercial that plays on MCTV. Still working on this years.

Monday, August 10, 2009

CF Study and CF Article

I have SOOOOO much I want to blog about, but no time to do it:( Too much to do! Can anybody clone me? =) LOL

Anyways, click here for another great article about how we are getting closer and closer to a CURE for Cystic Fibrosis!!! Gotta love science and researchers!!! =)

If you would like to be a part of finding that CURE, just click here and make a donation today;)

A few days ago I helped by doing a CF study on-line. It was for 3 days, not all day long or anything. I could get on whenever I wanted. All I had to do was answer some questions and then respond to others answers if I wanted to. There were only about 12-18 questions each day. Most of the questions regarded finances and insurance for CF. There were probably about 20 other CF moms doing the study. It was really neat to compare answers and see how different it is for everyone in all the different states.

It seemed as though insurance is different for everyone, shocker there;-) Some cover WAY more than others. I feel bad for those who sometimes have to skip taking their meds, b/c they don't have the money to order more. That was what surprised me the most!

Another main topic was... what are some expenses for CFers? We pretty much all said FOOD!!! So you know, we didn't see each others answers before we answered the questions. I don't even think the moderator was looking for that type of answer, but we all gave it. The high calorie food that we have to buy can get very expensive. For us right now, we spend about $130 every 2 weeks just for Lil' Chris in high calorie foods!!! It is mainly b/c we have to experiment with lots of different foods to see what he'll eat and what he won't eat. I think we spend about $20 on ourselves, and then we just eat what Lil' Chris refuses to eat. Which is probably the reason why I haven't been losing much weight lately...too much high calorie foods;( Good for Lil' Chris....BAD for Mommy and Daddy:( I hate to waste food though, and money. Good thing I've been running my 5 minutes everyday to burn off those extra calories that my body isn't used to;-)

They asked other questions like what meds, what treatments, basically what all do you have to do or not do extra b/c of CF? One thing that I mentioned was that CF is a part of every second of our lives. When we go out shopping, when we go on vacation...we have to dodge every person who coughs or sneezes or blows their nose. We sometimes have to wait in the car for 5 or 10 minutes before going into a store, b/c someone is standing right by the doors smoking. We have to wait for them to finish and then wait for the air to clear before getting out of the car. It stinks, but it is just something that we do without thinking b/c we love Lil' Chris and want to protect his lungs.

Anyways, a bunch of other CF moms agreed with me. Some said they agreed 100%, others said they agree 120%! So I guess we are not the only ones that play the dodge game;-) lol

To sum up the study, it was very interesting, a lot of fun, and I learned a lot and I hope others learned something from me;) I can't wait to do another CF study to get us one step closer to a CURE!!


Oma & Opa said...

Dad & I agree that all meds should be free for anyone with a life threatening disease! All kinds of money is spent on research for the meds and then the pharmacutical companies charge an arm & leg for the meds and of course let's not forget the pharmacies profit on top of it. It's a sad country we live in when people have to do without their meds b/c they can't afford them. I know this to be true for myself but I don't have anything life threatening so I can do without. Wouldn't it be nice if people/companies would stop being so greedy but unfortunatly we live in a sinful world.
Lots of love, hugs & kisses to you all.

Aspiemom said...

This was very interesting. If you polled me, I would say we have very lousy insurance and our biggest expense is medications, including IV's. I don't have that food problem!

Auntie Steph said...

Wow, M, I'm really glad you were able to be a part of this study. It sounds like it was very interesting! I agree that there should be a better universal insurance for everyone! But for people with life threating illnesses who depend DAILY on medication, should definetly have more affordable to free access to the meds.