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Why do I have RunSickboyRun.com?
Blessed with Cystic Fibrosis and a positive attitude, it is my duty and passion to show the cystic fibrosis community that anything is possible through this blog that discusses the daily trials and triumphs that accompany not only life, but a CF life. RSBR is a hub for comfort, information, advice, encouragement and understanding. It is a place where no question is ignored, no accomplishment is too small, no goal is too big, and every comment is cherished.
Cystic Fibrosis Education Days are a great opportunity for families to learn more about the advances and treatment of cystic fibrosis. On Saturday, the CF center of Stony Brook will be hosting this great event and I'm fortunate enough to be speaking at it. If you are anywhere near this center, I highly encourage you to check it out and please come up and say "hi".
I don't have too much information besides that. I just show up and they tell me what to do :)
We can't stress enough how important it is in our own lives to slow down when things seem to be getting "fast" and just think about the little things that we're thankful for. We had 3 brave souls join us last week in expressing their thankfulness last week and we're hoping that more climb on board today! I have a little "Linky Tools" at the end of this post that you can use to join the party and link up your thankfulness post! Feel free to spread this around to anyone you know that may like to participate.
I'm thankful for freezers. This may sound like a weird thing to be thankful for, but let me tell you what, our freezer saves us a TON of money. I can't imagine if we had to buy and eat everything fresh! We'd have food going bad all the time. It also makes dinner time easy when you can just pull out some frozen veggies, frozen chicken and vwalla!
I'm thankful for the TVs at our gym. We have been really good at getting in 30-60 minutes of cardio every time we go to the gym and a big part of that is because the time flies by since we're able to just watch tv shows. It's hard to say, "Naa, I'm done" when you're doing exactly what you'd be doing at home, only getting a work out in at the same time.
I'm thankful for email. My family constantly has emails flying back and forth with pictures from the day, forwarding on updates from work, filling each other in on happenings. It makes me feel like my family is really close, even with my parents far away. It's a nice, quick and easy way to stay plugged into each other's lives.
I'm thankful for friends who have been there/are there! I have been chatting with several ladies on CysticLife, Facebook and the phone who are all going through the IVF process right now, or have recently gone through it, and man am I thankful. It is so nice to chat with others about their experience, hear what to expect, and have someone who can relate to what you're experiencing. It's very awesome to have people to chat with!
I'm thankful that although I've had some coughing up blood issues over the past couple of days, my PFTs haven't taken that much of a hit and I may be turning the corner. I'm not sure what brought on the sudden case of hemoptysis since I have been feeling great these past few weeks, but I'm just thankful that it wasn't worse. It can always be a little touch and go during times like this- I'm definitely going however!
I'm thankful for my upcoming opportunity to speak to the awesome folks at the Stony Brook CF clinic in Long Island, NY on Saturday. I was invited to speak at their CF education day and I'm always thrilled to be a part of these types of events. They fill a much needed knowledge and social gap in the community that I'm just honored to be a part of. If you're anywhere near Long Island, I'd love to see you there on Saturday!!
I'm thankful for a CF team that trusts me. Although I'm coughing up blood and my PFTs dipped a bit, they trusted me enough to make the call whether or not I needed a tune-up. I'm confident that this little set back was just a minor blip in the road and I'll be back on my game in no time. I of course promised them to keep up my four treatments a day, continue with additional airway clearance through exercise and hop on Cayston ASAP (which I'll be thankful for if it arrives tomorrow). It's so comforting to have trust amongst myself and the team, but I have a feeling it stems from two things: They know I love feeling good and they know I'll do anything to feel good.
I'm thankful for support. I feel support all around us coming from it feels like 1000 different places and people. We have great families, first and foremost, but we also have amazing friends and an amazing community behind us. Throughout this whole IVF process, we've been able to connect with others who have gone through (or are currently going through) similar situations on CysticLife. It's nice to be able to throw any and every question out to them and know it will be answered promptly, honestly and with eagerness to help.
I've been meaning to post this video for quite some time now. It's from our trip to San Francisco last October for the CF Concert Series. Apparently this guy who uses a fake bush/tree to scare people is pretty well know (I had never heard of him), and after seeing it, I know why. Make sure you at least watch until 2 min and 35 seconds, it's literally a blood-curdling scream.
So today Mandi and I were running around to doctors appointments, relaxing and, of course, observing MLK day the best that we could. Earlier in the day we had a fertility appointment to make sure that Mandi's eggs were still looking good and to go over how to give the shot that looks like a horse tranquilizer (I'm kidding, it's not that bad). We were also able to sit down with the doctor and go over some details about the whole process, which I'm sure we'll get into with you guys soon here on the blog. Just as a teaser though, stuff like how many eggs to fertilize, how many embryos to "put back" and what to do with the embryos we don't use at the moment. So as you can guess, it was quite the conversation, but we'll save it for another time.
Back to the part when we got back from the appointment. Wait a second, first let me set this up a bit. I've been feeling great. Mandi and I have been eating better. We've gotten back into the gym. We're getting back on track with exercise. I'm doing my treatments consistently and faithfully. I've noticed that my cough has decreased over the past couple weeks and my mucus has gotten lighter. All in all, no complaints, and I'm feeling pretty good. Now, I said all of that to say, today I coughed up blood, and a lot of it.
It was the weirdest thing. We pulled into our garage and just as I was getting out of the car, I felt it. It's a certain rattle that we get in our chest just before the blood comes up to play (you CFers know what I'm talking about). I walked out of the garage, coughed and spit. Sure enough. Bright. Red. Blood. I immediately made a dash for the bathroom sink because I didn't want to stain my rocks in the front yard! :) I coughed and coughed and coughed, each time bringing up the good stuff. There are different kind of coughing up blood episodes, those that just make your mucus a bit red and those that look like a murder scene. With each cough, blood splattered into the sink, and I'll I could do was hope that my aim was good. About 5 minutes and 1/2 cup of pure blood later, it stopped.
Ok, now what's the point? The point is, stuff happens. Stuff happens that we can't explain. Good stuff happens. Bad stuff happens. Life would certainly be a lot easier if we could explain everything, but it'd also be pretty boring. In this CF life, unexplained stuff can happen often. I think the key though is not what happens, but how we react. I didn't panic. I didn't get mad. I didn't stress out. Stuff happens. Stuff happens and we move on. Sure, I adjusted my treatment regiment today to try to prevent more blood, but other than that, I wake up tomorrow and I move on. I'll make sure to get four treatments in. I'll make sure to pay close attention to what my lungs are saying. I'll let my doctor know what's up on Wednesday when I have my (drug trial) appointment. Other than that, I do nothing different. I've been good lately about doing what I have to do to kick some CF booty. Faithful with my treatments. Faithful with exercise. Freaky stuff can still happen.
Ok, I know there are a few things we're all thinking, so let's get them out of the way: 1) That grown woman pretending to be a giant baby is a little weird. 2) Who can do ANYTHING in 10 seconds? Unfortunately I can't fast forward through chores like that! 3) Why did you have that posted? I can never have those 37 seconds back!
My answers: 1) I agree! 2) No one can - I'll tell you how I've changed it for a real person to do. 3) I'm sorry, at least I didn't post a longer clip!
Well I wanted to share that video to talk about one of my all time favorite tricks that my parents did with us kids, and how it still works to this day. When we were kids (even through high school) my mom or dad (normally my dad) would say, "the house is a mess, let's help mom by all of us picking up for 10 minutes." They would set the timer on the over and we would all take off in different directions running through the house to see how much we could get done during the 10-Minute Tidy. And let me tell you, 4 people can get A LOT done in only 10 minutes (especially if you're running...which of course, being competitors, we did). Now, I will say, maybe it helped that my mom is a neat freak. So the house never got dirty, things would just get out of order - you know, shoes here, a sweatshirt there, toys on the floor, books on the table. But at the end of 10 minutes, the house was back in tip top shape.
To this day, I love a good 10-Minute Tidy, and Ronnie's nice enough to play along! I'm naturally lazy when it comes to cleaning. I can think of a million ways I'd rather spend my time. But 10 minutes is easy to mentally commit to, so it gets me started, and once we're on a roll, we'll usually continue to clean from another 10-20 minutes to complete the job. And man, at the end of those 10-30 minutes, the house looks so much better. We do a 10-Minute Tidy 2-3 nights a week, and it keeps the house from getting very messy.
Here's what we do:
Whole House -
Pick up/put away stuff out (7 minutes)
Swiffer tile/wood floors (3 minutes)
Clean Dishes (empty/load dishwasher) (3 minutes)
Soft scrub counter tops (2 minutes)
Family Room -
Straighten pillows on sofa (we have a lot of pillows) (1 minute)
Put away remotes (30 seconds)
Put away shoes/clothes (3 minutes)
Clear night stands (30 seconds)
TOTAL TIME: 20 Minutes (10 minutes per person)
If we get caught up and want to really get the house looking good:
Whole House -
Vacuum (10 minutes)
(Quick) Dust (10 minutes)
TOTAL (extra) TIME: 20 Minutes (10 minutes per person)
Give it a shot! We just did one yesterday, and man the house looks good :)
PS - Pass along any and all cleaning tips you have. I'm still a cleaning newbie (since this is my first home and the first time if I don't clean it, no one will). And, well, let's just say I'm really good at surface cleaning, but the deep cleaning (the kind that actually matters) I need some lessons!