Friday, April 9, 2010

My First Ever CF Blog-What is Cystic Fibrosis?

Ever had pneumonia? That’s generally what my lungs feel like. You know how your lungs feel the first couple of weeks when you get back to exercising? My lungs feel like that whenever I walk to fast. Ever get that cough that just won’t seem to quit? I cough so much that I don’t even notice it anymore. Upset stomach? Avoiding an upset stomach on a daily basis almost seems impossible.

Here's the problem with CF, it's not a lung disease. If it only affected the lungs it would be a lot easier. CF is a disease of the cells. They don't work properly. I'll spare you with the science talk and just put it simply. The cells in my body can't regulate a proper balance of water and salt. It's way deeper than that, but that will give you the gist of it. The problem with the cells not doing there job is that it throws off a good portion of the rest of the body. You name the organ, and someway somehow, it is affected by CF. I've had multiple surgeries on my intestines and sinuses, as well as problems with my skin, kidneys, liver, and spleen. For me though, those things aren't the main problem.

The main problem that I have is a bulid up of thick and sticky mucus in my lungs. When there is a ton of mucus in there it makes it harder to breathe not only because your airways are full of junk, but because they are also irritated and swell up. Mucus is also a great place for an infection to be born and hide out. Infections are the main reason I am hospitalized. How do I know that I have something going on? My mucus becomes green, sometimes very dark green, and almost to the point of a brown (especially if I've been coughing up blood, which I'll get into at a later time). I also become very tired, short of breath, and shutter at the site of food. It can all happen very fast too. Once it starts it's really hard to stop. The key is that darn mucus. Generally speaking; No mucus, no problem.

Why did I tell you all of that? Surely not to play the victim or even worse have you feel sorry for me, but to put CF into real life. Let me be real clear: I love my life. Wouldn’t change it. I have learned to “deal” with the consequences of this disease over the last 29 years. I never question “why?” I know why. CF has shaped my life into who I am today. Has there been negatives? Of course! But way more blessings have come my way by having this disease.

One thing to remember is that CF affects thousands of different people in thousands of different ways. I can only tell you my story. I hope to write at least one personal story or thought or opinion a week so you can get to know me better. You can follow my entire journey on www.RunSickboyRun.com.

7 people had something to say...:

Jamie said...

Hey I found your blog through a friends blog... I will link your blog on mine! Check mine out~ I know exactly what you feel like...I almost died from Cystic Fibrosis! My blog is www.jamiebug.blogspot.com

Sam said...

Hi Ronnie, as a mum of a gorgeous 12 year old boy with CF, reading your Blog has given me an insight into what it feels like to have CF & that is so valuable, my boy is still a bit young to express how CF makes him feels. Thank you i appreciate you being so open :)

LauLau said...

SO well said!

Diary of a Diva Mom said...

Well I follow your tweets and facebook and I am exciting your blogging. Your voice is being heard all around and hopefully (SOON!) we find a way to cure this disease. I actually work for the CF Foundation, I help raise money to fund research to help find that cure .. I hope people read your story and get more involved .. Knowledge is power!! Keep fighting!!

Anonymous said...

Ronnie, I'm so glad that you posted this. I try to stay so incredibly positive for Austin, and tell him I understand how he feels. The fact is that I don't and I never will. I know this. Maybe someday he will be able to explain how he feels and not just say I feel yucky. I thank all of you Cysters and Fibros for being so open and being such a positive influence on the CF world! THANK YOU!!!

Nat said...

S a new CF Momma, I so so appreciate you describing CF as you have! It is so hard to understand all the scientific jargon and even harder to undertstand how my sweet little man feels, will feel in the future and it makes me feel so helpless! I love your matter of factness and simple yet spot on narration of what you encounter everyday - those damn cells!! You are an inspiration to the CF community for sure, but even more importantly you are a shining example of the power of positivity and living life to the full - in short your attitude rocks! Keep up the good work - reading your insight and gaining your advice keeps me going and gives me the courage to keep on fighting! Well done!

Anonymous said...

Cool site, I hadn't come across runsickboyrun.blogspot.com previously in my searches!
Keep up the fantastic work!