Question from Researcher

Happy Saturday!!! I was recently contacted by a researcher who is gathering info for her PhD. She asked some questions that I've decided to turn over to the community. I appreciate you guys taking the time to think about the following question and give it your most thoughtful response. I think it is always wise for us to help out anybody doing any type of research on Cystic Fibrosis-whether the physical, mental or spiritual affects of the disease. Just in case your curious, I'm not getting paid to participate and either are you :)

Question 1. In your blog you often mention your body, or parts of your body. You talk about running to keep your body healthy, you talk about feeling pain, fatigue, feeling out of breath and you talk about pushing through those feelings to go running or walking to stay healthy. Your most recent posts have been about getting your body healthy, about how the different drugs are making your body feel, concerns about how they might affect your body and so on.

I am interested in finding out how people with CF experience their bodies. Not symptoms of CF but the thoughts, feelings, and ideas about your body that having CF and also dealing with CF in everyday life brings up for you.

For example, I have some problems in my neck and shoulders and it has really changed the way I see my body, and not only that, but my outlook on life. I thought it was strong and would last forever and all i had to do was feed it and sleep. Now I know that you can't rely on anything to stay the same or be what you expected. I know your body is something you have to care for. Sometimes I feel angry, sad or frightened when I am in pain and can't sleep or do my work. I feel frustrated and disappointed when it interfere with my plans. Sometimes I feel excited because I think my body is teaching me important lessons about life - how you can't put too much store in plans for the future for example. So these are some of the thoughts, feelings and ideas that my body brings up for me.

Bio: I am an Australian health researcher and have been doing research with people with CF since 2006. I do social research, not the treatments or laboratory research, which aims to understand about people's lives, their experiences and perspectives. My current project is my PhD in which I am trying to understand the experience of being an adult with CF. The idea is to gather, in a 'scientific' kind of way the sort of information that can give doctors, nurses, policy-makers and so on an insight into the more personal aspects of managing and living with CF in adulthood as opposed to the medical bits. I hope this sort of research will eventually lead to more appropriate treatments, better relations with medical professionals, better health policy and community support. I have contacted Ronnie to help me thrash out some of the ideas that are coming up in my research

So, what do you guys think? Do you have any answers to "how you experience your body" as a result of CF?

The First Time I Ever Had to Give a Robbery Update

Can't believe I'm giving you a robbery update, but then again, it's turning out to be a pretty cool story. It's a strange but little and connected world we live in. Also, big shout-outs to Courtney and Chris for the sweet care package that I just got in the mail. Seriously you guys??? Too much, but I REALLY appreciate it.

Aztreonam One Step Closer to FDA Approval!!!

GREAT news for the CF community!!! FDA panel says Gilead drug aztreonam aids cystic fibrosis patients. We're one step closer to having this drug available to the community!!!!

http://www.reuters.com/article/idUSN1023955020091210

A U.S. Food and Drug Administration advisory panel on Thursday said it found Gilead Sciences Inc's (GILD.O) aztreonam was an effective new treatment for life-threatening lung infections in cystic fibrosis patients.

The drug won marketing approval in September in Europe and Canada under the brand name Cayston.

The anti-infective drugs panel's finding on a vote of 15-2 that the drug is safe and effective serves as a recommendation that the FDA approve the drug. While the agency is not required to follow an advisory panel's recommendation, the panel's opinion carries great weight.

The panel said the safety and efficacy involved a 75 milligram dose administered three times a day to aid in improvement of respiratory symptoms and lung function.

Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive systems of about 70,000 people worldwide, according to the Cystic Fibrosis Foundation. A defective gene and the protein it produces cause the body to produce thick, sticky mucus that clogs the lungs, leads to life-threatening lung infections and obstructs the pancreas.

Azteronam is designed to treat lung infections in these patients caused by common pseudomonas aeruginosa bacteria, for which there are few inhaled antibiotics available.

Aztreonam sales could reach at least $200 million globally by 2015, according to Summer Street Research analyst Carol Werther. The medicine could strengthen Gilead's pulmonary franchise but pales in importance when compared with its stable of HIV drugs, Werther said.

Dr. Bruce Marshall of the Cystic Fibrosis Foundation urged FDA to approve the drug swiftly and told the panel: "There is a desperate need for additional inhaled antibiotics."

Drug resistance is a complication in treatment for these patients.

Thankful for a Head Cold???

No matter what is going on, there is ALWAYS something to be thankful for! Even if it doesn't seem like it at the time, the challenges that we push through can provide many reasons to be thankful in the future. Each day that we are shaped by adversity, makes us a day closer to knowing who we truly are....

Wordy Wednesday by Mandi

Mandi gave me a nice little surprise by filling in for me today! I'm always trying to get her to do a video blog, so I'm glad she finally stepped it up! I'd say for her first time around the block she did great!!!

So, how would you rate Mandi's first video post?

10= Ronnie should never again do video posts.

5= We'd like to see more of Mandi on video but keep Ronnie.

1= Seriously Mandi, please don't touch the camera again.

CF Concert Series Thank You!!!!!

Sorry if you're here expecting another installment of "Top Ten Tuesday" but I thought I'd put up this video instead. This is a "thank you" video going out to the volunteers who gave of their time at the CF Concert Series this year in Dallas, Texas. It was a great event that Mandi and I were absolutely honored to be a part of. We brought our foundation CysticLife out to the event to act as the CF "awareness and education" police to make sure people knew why they were all crammed into a concert hall! The concert was a lot of fun and I was able to meet some CF families, that I had known through FB, face-to-face. I'd call the entire weekend a smashing success...can't wait until next year!!!!!!

PMS: Prednisone Mood Swings

I had a first this last week. It was the first week I ever dated myself while on my period. "WHAT ARE YOU TALKING ABOUT??" you ask? Let me explain...

As many of you know, Ronnie decided to do a burst of Prednisone to get rid of some of the inflammation in his lungs. AND, as many of you know, Prednisone makes people irritable. Well I found out this week that apparently Ronnie is no different than the average bear when it comes to how Prednisone effects him. He is on edge, a little snappy with me, and nothing is wrong, per-say, but nothing is quite right. It is SO foreign to me to experience him like that. If you know Ronnie, even in the slightest, you know it is HARD to get a rise out of him. I can TRY to and still can't. But since he started Prednisone, it is all too easy. Yesterday, I'd had my fill. I was frustrated that he was not being his typical self. I was annoyed that he wasn't quite as loving towards me as usual. I was sad that he seemed a little agitated with me.

And then it hit me...this must be what it's like dating me once a month. Talk about a wake up call. It made me rethink my frustration with his sudden attitude change. I actually began to feel a little guilty. I began to think, "well shoot, if he can put up with this 12 times a year, I can put up with it a few times a year."

For those of you who have never been on Prednisone and want a little more details about it's side effects, I here is a link from webMD of all the side effects. And below I've listed some that Ronnie seems to be experiencing (from my perspective):

• Increased Hunger
• Visible Water Retention
• Mood Changes
• Temporary Redness of Face and Neck
• Not Feeling Well

Needless to say, I'm excited for his burst of Prednisone to be over, but I'm glad I got a little insight into what it must be like to date me once a month and I hope I remember this down the road, to be sure to curb my own PMS. I must say though, he is REALLY trying. I can tell he is making an extra effort to keep his agitation inside and that he's going out of his way to love on me when he catches himself getting snappy. And that makes me feel a lot better. Regardless though, I'll be happy when Prednisone gives me my fiance back!!!

My House was Robbed...

...and there is nothing that I can do about it in here, so let's move on!! I still have a house to go home to and I'm much more concerned about going to that house with good lung function, than I am to returning to my TV.