Saturday, July 18, 2009

Do I Ever Get Sick of CF?

Instead of a video update tonight, I wanted to share this exchange between myself and a parent of a little CFer that I met on Twitter. If you're interested in following my Twitter account you can find me @RunSickboyRun.

Question from Twitter: i have a question, do you ever get sick & tired of having CF & having to do all the treatments?

My Response:
So do I ever get sick of having CF or doing my treatments? Yes and No. Let me explain, I have never nor will ever get sick of HAVING CF. See, I know no different. Since I don't know how the alternative feels, I don't know what I would "want" if it not for CF. To feel normal you may say; to which I would respond, what is normal? See I may have CF, but CF doesn't have me. Plus, who knows the type of person I would be with out. I could be a better person, but then again, I could also be worse. CF has shaped how I look at the world, my life, and my loved ones. I value the time I have on this earth and I don't take anything for granted. I'm actually thankful for CF and what it has done for my life. I know it sounds strange to some, but I constantly say that I am "blessed with CF". Do I have my struggles? Sure, but every one does. I have to learn how to deal with those struggles and navigate my life just like every one else. I love who I am (sounds a little cocky when I say it :)) and I know CF at least plays a minor if not major role in that.

As far as treatments go, of course it can be frustrating. But as with all things in my life, I try to spin it into a positive light. Since I know I have to be sitting many times during the day to do my treatments, I started doing more and more things online in order to compliment my treatment time. I'm a very active person and love to exercise and travel and I know without being healthy I can't do either of those things. So for me it just comes down to a "necessary evil" in my life. If I want to continue to live the lifestyle I'm accustom to, then I'll need to stay faithful with my treatments. It's as simple as that. If you want good teeth, you better brush and floss. If you want good lungs, you better do your treatments. I see it no different than that. I'm willing to make the small sacrifices (time to do treatments) in order that the rest of my day/life is enjoyable. I know too many CFers who sit around there house and complain about how terrible they feel and how much CF sucks. And I say, while you're sitting around feeling sorry for yourself, stick a neb in your mouth and put your vest on. It's all about putting yourself in the best position to succeed. The CFF has put a lot of money into giving us resources to aide us in navigating our lives and putting us into the best position to succeed. Why wouldn't we take FULL advantage of that?

Yes, I am currently in the hospital and will probably be here for a couple of weeks. The hospital is another one of those things that I know I need to do in order to put myself in the best position to live a full, happy and healthy life. If I have to be in here 65 days a year in order to have a rocking 300 days the rest of the year, then I'll take that deal every time. Every year of my life I've had WAY more good days than bad, so why would I have any reason to complain?

I hope that answered your questions and I thank you so much for seeking my opinion. Please don't ever hesitate to email me other questions and thoughts. You may also enjoy some of my older posts on the blog, here are the links: http: //, http: //,

Do Life,
So what about you? Do you ever just get sick and tired of being "sick and tired"?
And what about your treatments, ever feel like giving them up and just dealing
with the consequences?

Friday, July 17, 2009

Clinical Trials for Cystic Fibrosis

So first thing that I want you guys to notice is that I changed my shirt. Second, thing you should notice is that Mandi hijacked my bed. Finally, I'd love some feedback on this blog post and some answers to my questions at the end. Thanks guys!

Thursday, July 16, 2009

Why I'm a Cystic Fibrosis Awareness Junkie

Let me come right out and answer the question that I know is on everybody's mind; yes, I have the same shirt on from yesterday. Whew, glad I've gotten that out of the way :) In the following video, I discuss why I am so passionate about spreading awareness for CF. Enjoy!

Wednesday, July 15, 2009

They Wouldn't Let Me Film the PICC Placement

It was a pretty uneventful day in the hospital today. They wouldn't let me film my PICC line being placed, but I'm going to have them talk to my "legal team" for the next one that they do. Most adult CFers can probably relate to how I'm feeling today; it feels like I got run over by an 18 wheeler.

If you want to get to the "meat" of the video blog you can skip to :59. I haven't learned how to edit videos yet so you get to see all of it.

I did find the following video on a girl getting a PICC line placed at her bedside if you are interested. Also, if you want more info on a PICC line please click here.

Hospital Stays Are What You Make Them


It’s hospital time again. I am actually a little excited about Ronnie being in for his tune-up - and no, it’s not because he’s gone for 3 weeks ;-). I never thought I would actually be excited for a hospital stay because I used to hate hospitals. I’ve never be admitted to a hospital, or spent much time in one outside of the quick ER visit (although we all know ER visits are never quick). They always felt cold to me with their white walls and stainless steal. Ronnie had no idea how much I hated hospitals the first time I went to visit him. I drove to Tucson from Phoenix, in a terrible thunderstorm, and when I got there, I was informed that the power was out. Yes, the power was out IN THE HOSPITAL, I didn’t know that could happen. It felt like I was stepping into a horror movie as his brother, Grant, lead me through the dark, deserted halls. It was like one of those scenes in scary movies where you want to yell at the character and say, “What are you doing? You NEVER go into a hospital when the power is out.” But after I spent my first few days with him, I began to feel comfortable, and actually began to enjoy it.

I like our hospital time together for two reasons. First, and this may sound funny to most people reading this, but it’s a special time for us. It’s a rare time where we have nothing to do but enjoy each other’s company (and enjoy it we do; we play games, listen to old John Jay and Rich shows, talk, play catch, watch TV (especially 48 hours, dateline) and the list goes on). I enjoy being there.

Secondly, it helps make CF real to me and helps me understand everything that comes along with it. I’m a worrier. I’ll worry about anything and everything. So for me, it helps if I can see what’s going on. If I weren’t there when he went into ICU, I would have been terrified and worried. If I weren’t there to see him on the BIPAP, I would have thought it was scarier. If I wasn’t there when he coughed up blood, I would have panicked. Being there helps me see that each thing isn’t as scary as my mind makes it. And while it makes all the “hospital things” less scary, it makes CF more real. Ronnie downplays his CF and how much it really affects him. When I’m in the hospital with him, however, I can see and hear things first hand - not his diluted, “it’s no biggy”, version (although I must admit, he sure makes me feel like he can handle anything that gets thrown our way, whether it’s related to CF or not, and I do love that about him). This helps me understand more about how he’s really feeling and just how serious CF can be because it’s easy to forget when I’m with someone that seems “healthy” so much of the time.

All in all, I’m excited for this stay - I want him out and home in two weeks. Lucky for me, I can work from anywhere now, so I’ll be able to be here all week, working during the day and enjoying our time at night.

Tuesday, July 14, 2009

4 Attempts to Start an I.V.- All On Film!

WARNING: If you have a weak stomach, I would suggest not pressing play. These are videos of nurses attempting to start an I.V. on me. Enjoy!

So it took 4 attempts but we finally got one started. I go for my PICC line tomorrow morning. I'm hoping they'll let me film that as it will be even more entertaining.

A Panther at My CF Clinic

Here are some more videos from the clinic:

To understand the next couple of videos I suggest you watch this clip from American Idol from a couple of seasons back. His name is Eccentric and he is a self-professed panther. He's known for a couple of "panther" moves including his best, "the panther swipe". This clip makes me laugh every time.

So for some reason Mandi and I started talking about this guy in clinic (it can get boring in there) and she was having some trouble with the panther swipe. Not that I'm any better, but I think it sounds a little more like the panther himself. We got interrupted by the dietician (how rude :)) but Mandi was able to squeeze in one last swipe.

We were at it again after the dietician left and Mandi really started to get it down. She was becoming a panther right before my eyes. I'm so proud!

That concludes the panther swipe videos and I hope you enjoyed them. I still haven't gotten a bed from the hospital and I'm just waiting for the call. More videos will be coming your way shortly straight from "The Hole".

Monday, July 13, 2009

Pulmonary Function Test with Sickboy

So here I am at clinic doing some PFT's (Pulmonary Function Test). They are trying to determine how many liters of air I can inhale into my lungs (FVC) and then how much of that air I can blow out in the first second (FEV1). They have a certain number predicted for each measure based on my age, height and weight. The last time I did these (about 3 months ago) I was 79%/61% (FVC/FEV). That means that I could get 79% of the air in that they predicted I should be able to get in, and of that air I can blow out 61% of that air in the first second. I completely normal lung can of course get 100%/100% or even above that. So what were my numbers today?

76%/59%!!! So if you're keeping score at home, I decreased a little bit from the last time I did these tests BUT they're using a slightly different system now to keep it more standard across the board at every clinic. So, in actuality, my numbers are the exact same! For the last three months my PFT's haven't declined one bit. I'll still be going into the hospital though as soon as they can get me a bed though. I feel some kind of infection going on and it's getting harder and harder to keep up with life and work and working out. So we're going to nip it in the bud before it gets worse and hopefully it will be a short stay. Wish me luck!

Random Picture of the Day

This is the pool that I have spent about 3 hours a day in for the past 10 days...