Thursday, November 18, 2010

I still succeeded (part 3/3)

We stopped at mile marker 18 to take a photo together. We made it to “the wall”. And I hit that wall at full force. I felt like there was nothing left in me, We struggled on, fighting against my legs which didn’t want to move, we kept taking one step after the other, breathing into my gloves to get some warm air into my lungs. We pushed on towards mile 19, right before entering the Bronx. Joan wanted me to stop at the medical tent to warm up and see how my breathing was. They wrapped me up from head to toe in a warm wool blanket, and gave us pretzels and OJ. We sat there for about 10 minutes before my body stopped shaking but my lips were still purple.
Maybe if I wasn’t sick at the time, maybe if I didn’t have that asthma attack a month earlier, there are so many maybe’s that keep running though my mind. Maybe if things were different we would have decided to keep pushing on, mind over body. But because of my recent exacerbation, neither of us wanted to push too hard and risk something serious so we made the crushing decision to stop there.
At that exact moment I felt defeated, like a failure, I had disappointed everyone, most importantly I disappointed myself. We got on the bus which was already full of ‘drop outs’. I didn’t want to be one of them. I wanted to cross that finish line and get my medal.
Side story…the bus ride…oh, the horrible bus ride. Not only because of how I was feeling but we had the worst driver ever! Instead of sticking to the route he was supposed to take he announces that he’s skipping the other stops because the bus is full and we’re going directly to Central Park. Good right? Wrong. The guy makes every wrong turn he could possibly make, instead of pointing out to the police he was a “official marathon bus” badge so we can turn down the closed streets he drives all the way down to 53rd street and is headed to Times Square. We’ve been on the bus for over an hour already and it looks like we will be on at least another hour the way he was driving. Joan turn to me and says “I’m sorry, I have to pee, I have to get off the bus!” So we talk to the driver who drops us off on 53rd and 5th. We stop to use the restroom at a bar and then walk to 78th and Central Park West. Close to a two mile walk. Thanks for the ride bus driver!!
We picked up our belongings from the UPS trucks, bundled up in our hoodies and sweats, finally cozy warmth, and met up with our family outside the park. I was still bummed out about not finishing, and there was still a lot worth celebrating so we went to get burgers and beer at a place in the village. I don’t think I have ever eaten a burger that fast in my life. I was starving.
As much as that moment, the moment when I had to say, I’m dropping from the race, crushed my spirit, I know I accomplished so much more. From the beginning of this journey it was never about crossing the finish line, but more about challenging myself and pushing myself to be a better me. And I succeeded. I ran 19 miles, a personal best. Seven months earlier I couldn’t even run a mile without getting out of breath. I was able to increase my lung function over 50%. I learned so much about myself and have become a stronger person. This journey also brought me closer to the CF community by sharing my story, starting a blog and meeting others who share in my struggles. I met some incredible people by being part of Team Boomer and together we made a difference. My story was shared on the NYRR website and my CF clinic is sharing my success with younger CFers to encourage them to exercise. I feel very proud to have accomplished what I did in those 7 months.
Now here I sit, 10 days after the marathon with a PICC in my arm waiting for my nurse to ring my doorbell to change the dressing. Who goes from a marathon to IV meds? All in a normal day for a CFer!
So now what? I’m going to continue running and swimming. I’ll probably run about 10-15 miles a week (3 days a week) and swim 1-2 days a week. It will be nice to run just for fun, not with a set distance or set pace in mind. Just get outside with my IPod and run. I want to run a few ½ marathons including the one in Disney World. And part of me, the competitive side, still wants to cross that finish line and get my medal. So maybe I’ll be out there again in a few years! Anyone want to join me!?

Tuesday, November 16, 2010

Breathe, Enjoy the Moment (part 2/3)

A plane passed overheard flying a banner which read “Breathe. Enjoy the Moment.” I think that is the perfect saying for what lied ahead. And just like that the cannon blew and we we’re off (well after the 10 minutes it took for us to walk to the starting line amongst the crowd). I was lucky enough to be in the wave that was running on the lower level of the Verrazano (insert sarcasm here). No sun, decently strong winds, I was so glad I had kept me sweats and hat on.
It was a slow two mile span weaving in and out, passing and being passed by runners from all over. It’s amazing to me how many people from other countries enter the lottery to run in NYC. I couldn’t count the amount of different languages I heard in the starting village. On the bridge alone we passed runners from the CF Trust and a group from Ireland running in support of CF. How cool is that?! And speaking of charities, the NYC Marathon raised over $30million for charities in this years marathon. Team Boomer rose over $500,000 alone.
Back to running… as we passed the two mile mark at the end of the bridge we made our way up to the local streets of Brooklyn. I tossed off my sweats and hat but luckily kept the gloves. Here is where the race really began for me. The streets were lined with spectators cheering us on. The energy the crowd gave off was out of this world. People were blasting music from out their apartment windows, local bands were out on the street performing. Fire departments had their ladders out hanging banners and cheering everyone on. Signs were held in the crowd, some quite humorous… “hurry us, they are running out of free beer at the end.” Little children had their hands out hoping to get a ‘high five’ every now and then. Some were even passing out Halloween candy. And what I thought was totally cool was the few that stood before the port-o-potty’s holding toilet paper! Much needed, thank you! Most runners (including us) have their names written across the front of their shirts and when someone saw your name you would her “Come on Karen, you can do it, let’s go, you’re doing great!” What a rush! I didn’t even thing about running the first ten miles of the course. I literally “relaxed and enjoyed the moment.” And for those first ten miles the crowd never died. They were just as full of energy at mile ten as they were at mile 3.
As I ran up to the Gatorade station at mile 10 I saw Joan there waving at me. I stopped to stretch, took some salt tablets and off we went. Between mile 10-11 I could start to feel the energy slowly drain from my body. I didn’t expect this feeling to start until mile 13 but the weather conditions were much colder and windier than I was used to running in so it was taking more energy to keep my body warm. We kept running at a slightly slower pace though mile 13.5 when we hit the Pulaski Bridge into Queens. I had been running for just under 2.5 hrs at this point and I still felt great but started to feel my muscles starting to cramp. Nothing I haven’t felt before and nothing I couldn’t handle. We stopped to stretch and walked over the bridge. Then off we went again to the Queensboro Bridge.
Unfortunately my leg cramps were not getting any better by the time we got there (mile 15) and we had to go across the lower level of the bridge. The cold wind hit me like brick and I had no choice by to walk the bridge.
Here is where my memory is a little foggy. We started running again when we got over the bridge (mile 16) and I made it to mile 17 with much encouragement from my friend but I needed a break. We started walking, my knees didn’t want to bend, my muscles ached like I have never felt before and the cold air was hitting my lugs and making my entire body cold. I think it was somewhere around mile 18 that Joan knew I wasn’t going to be able to finish. My body was shaking I was so cold, I was physically and emotionally drained. I started crying, I don’t know why… because I was so cold? Because I hurt so much? Because the cold air was now preventing me from breathing in deeply? Because I knew deep down that I wasn’t going to make it 8 more miles

Monday, November 15, 2010

Marathon Morning (part 1/3)

I just haven’t had time to blog lately but there is so much I have to share about my experience with the NYC Marathon. I’m going to quickly sum up my race week experience…
I met Joan my former Peds CF doc and close friend of mine at the Javits Center for the expo. Since I have CF I was able to sign her up as an “official guide” for me and she is jumping in at mile 10 to be my running buddy for the remainder of the race. I’m soooo happy she will be with me to share this experience with me.
Saturday evening Boomer Esiason himself took the Team out to dinner and gave us a “pregame talk”. His son Gunnar was there as well. During dinner I got to talk with a few members of the team and we shared our CF stories. I loved how it felt to be closer to the CF community, not only though the computer but in person. Dinner didn’t last long since it was race day evening and we all had to get home for a good night sleep!
After a horrible nights sleep, my anxiety levels must have been through the roof, my alarm went off at 4:00 and it was time to quickly get dressed grab my bags and head to Central Park. The day was finally here, November 7, 2010. The day I was preparing for since April, the day of the NYC Marathon.
So down to Central Park we drove, hubby dropped me at our bus, I grabbed a bagel and hopped on. The sea of busses lining Central Park South slowly began to move and a large lump gathered in my throat. Off we went on the drive though Manhattan, Brooklyn and finally to the start in Staten Island. As we were stopped on the bridge we all looked out the windows toward the Manhattan skyline and thought “really? I have to run all the way back there!?”
We made our way off the bus and to our tent in charity village. (I’ll save you the bathroom etiquette – or lack there of – of my fellow marathoners). It was now 8:30ish and I was in wave three of the race, my start time wasn’t until 10:40, so needless to say I had a lot of time to kill! I ate a bit, drank lots of Gatorade, ‘glided’ up, pinned on my number and dropped off my bag with the UPS trucks. Walking around the start village with 43,000 other marathoners was crazy! The NYRR had everything very well organized but it was still hard not to feel intimidated by the sheer number of people.
10:00 came and it was time to get into the corrals. Three other woman on Team Boomer came to my corral with me, Whitney a mom to two CF boys, Haylie a college CFer and her running partner. The cannon went off for wave two and we saw 20,000 people run across the Verrazano Bridge! WOW!! What an amazing site that was.
It was on the colder side so I still had on my sweats, hat and gloves as I made my way to the starting line with Whitney who was going to be my running buddy for the first 10 miles…

Tuesday, October 5, 2010

Much better

So I laced up my running shoes again, this time at the gym since it was raining and I don't need to aggrivate my asthma anymore than it already is. Took my albuerol right before I left and hoped for the best. And I'm happy to report I had a much better run than Sunday's, five miles in just under an hour. I kept my pace slow between 5 and 5.2, and worked up a nice sweat. A few times during the run I could feel rails in my chest when breathing, but I couldn't cough anything up. This weekend is calling for 14 miles which I think I will be able to complete as long I keep improving.

I've been on the Bactrim for 5 days now, I'm also on my "on" month of TOBI. And I'm starting to see a slow improvement. I'm not coughing as much junk up in the morning and noticibly coughing during the day. I still don't have my voice back and my throat feels swolen but I can live with that as long as I can breathe and run.

Only 32 days left until Nov 7th!

Sunday, October 3, 2010

Why NOW lungs? why NOW?

I wish I was writing a post on how I feel incredible and just finished an 18 mile run. But instead asthma is kicking my ass and taking me down. I'm trying not to feel disappointed in myself but right now I am. I feel like I'm not in control of the situation anymore and I'm angry about it.

I thought I had gotten rid of that nagging cough I had for a few weeks. When we left for vacation I was feeling pretty well. But one week ago my asthma started getting really bad. I wasn't getting short of breath, I just couldn't take a deep breath in. If felt as if someone was pushing back on my chest. Then my voice went. I sound like a boy going through puberty. A few days later the coughing began and it's been getting progressively worse. I was on a round of prednisone with helped a bit and am currently on Bactrim but I know the inevitable outcome of this situation. Another holiday season with IV's.

I'm always somewhat annoyed when I have to go on them but this time I am really angry. I have been so compliant and have been running my ass off and still. Not only that, but why NOW? Why with just a month until Marathon time does this have to happen? If I go on them now there is no way I'll be able to get back into running shape by Nov 7th. So I'm leaning to start them after the race. I just hope I can hang in there that long. Goal now is to get this asthma under control so I can start running again and hopefully the Bactrim can hold off the exacerbation from getting too bad.

Which brings me to this morning. My 18 mile run was cut in half. I ran 3 miles to start but my chest started getting tight even after albuterol. I didn't want to stop so I power walked until I hit 9 miles. The tightness never went away and I didn't want to push it so I stoped.

I don't have a car tomorrow so I'm stuck at home. I'll probably do an hour of the elliptical while the boys nap. And a call into clinic tomorrow is due. Hopefully I'll have a good report to write by Wednesday.

Wednesday, September 15, 2010

soooo tired

I've been dragging my butt for the past two days. On top of being completely sore in my upper legs Jayden has been up at 5:00 the past two nights. I can tell he's teething and I feel so bad for him, he has such a hard time with every tooth he gets. But bringing him to bed with me is the end of my sleep. I'm kicked in the throat, headbutted, pushed off the bed. He's horrible to sleep with! Plus, I'm so anxious about our upcoming vacation I can't sleep well. I keep tossing and turning and waking up every hour or two. And since I've just gotten rid of my cough I'm really worried that this lack of sleep is going to cause it to come back. UUgggg.

Short runs these past two days. I took it slow since my legs are still hurting. I don't want to injure myself. Mostly power walking with a light jog here and there. We won't get to Florida until Sunday afternoon so I won't be able to get my long run in until Monday morning. Hopefully once we arrive in Florida I'll be able to sleep better at least. I'm going to have to do my runs either early in the morning or at nap time. The time share we have has a fitness center and I'm going to look up local high schools to find a track for my long runs. Let's see how these lungs hold up in Florida weather. I never thought all this would be on the agenda for a vacation!

Unfortunately the RT at my clinic didn't come through in time and I won't have the acapella in time for this vacation, so I have to lug the vest down with me. Boo.

Honestly I'm so tired it's only 8:00 but I'm doing my nebs now and then going straight to bed. Good Night all.

Monday, September 13, 2010

15 miles & a layer of salt

Fifteen miles, 3 hours, 3 blisters, 1 sore toe, and a layer of salt so thick that it actually looked like I dusted my forehead and neck in chalk! But I feel fantastic!! I licked my lips a few times and they tasted like the dead sea. Yuck! Overall, I actually had much better time and endurance than I expected. But I guess that's the point of all this training. I ran 4 miles, walked 1, repeat, ran 2 walked 1, ran 2. My heart rate was still climbing a little higher than I would have liked, but my body is still getting used to all this exercise. I didn't fall short of breath not once, that is quite the accomplishment for me! I concentrated on deep breaths in through the nose and slow exhale out through the mouth. And it worked. My legs started to hurt around mile 12, but not nearly as bad as two weeks ago, and no knee pain either! Yay! Only one cough the entire run, finally these meds seemed to get rid of whatever it was that was causing me to cough.

Fifteen miles! I've tracked 15 miles on my odometer and wow that's a long distance. Completing 15 and feeling great after makes me certain that I can and will push myself to the limits and cross that finish line at 26.2. I think my adrenaline is still pumping 20hrs later.

The next thing I'm going to work on is running different terrain. So far I've done all of my long runs on flat surfaces. I don't have a running partner so I've felt too uncomfortable to run on trails alone incase something happens. I've stuck to more populated areas like the track. But I know NYC isn't as flat as a track so I have to work on my hills. Thinking I'll start this week by increasing the slope on the treadmill during my short runs and see how it effects me. Just take it slow like I have everything else.

I'm still so excited about this!!

Monday, September 6, 2010

Ten miles and still a cough

Ten mile run this morning finished in 2 hrs. I'm glad to see that I'm now able to keep up the 5mph pace for 10 miles. Next week is going to be a rough one.. 15 miles! Yikes. I think my average speed is definately going to be slower once I go past 10. I just can't keep running at the same pace. My legs start to burn and ache. I wound up at the gym on the treadmill for this one. Just a late start to the day. My SIL and BIL stayed the weekend and we stayed up late each night. And it didn't help that Jayden wound up in bed with us at 3:30am. Daddy is such a sucker he hates to hear him cry.

I just realized this weekend that I ran out of refills for HS. So now I have to remember to call Dr.B tomorrow so she can call it in so I'll have it in time for vacation. I still haven't heard anything back about the acapella...ggrrr. I really wanted it for vacation so I didn't have to lug the entire vest along.

I'm still coughing more than I'd like and it's really annoying me. I feel so great and my PFT's have never been higher but here I started this annoying cough. I'm only coughing up stuff 2-3 times a day, but I wasn't coughing at all for the past 7 months. September is generally my "sick" month with the change in weather and my allergies and asthma acting up. I'm 95% better this September than I have been for the past 7 Septembers so I think I'm going to make it though with all new meds added to my regimine.

Monday, August 30, 2010


I already posted my big CF update on Wednesday, but there are a few other things going on. Despite my significant rise in PFT's I still have a slight cough maybe bringing up a bit mucus 3-5 times a day. I was put on a new medication for me - Cefdinir and hopefully that will help. Dr. B also put me on Singulair at night to help with my asthma. I feel it when I'm running, I can't forget to bring my albuterol with me or I get really tight in the chest quickly. But I never feel the asthma during normal activity, which is probably why although I knew I had it I never really prioritized it. I've been on Advair for a couple of years now but was never very compliant with it. I'm really trying to be now. I keep it in the bathroom next to my toothbrush so I don't forget to take it.

The RT asked me if I wanted to try an Acapella. I said I was happy with my Vest because I know it's working for me right now so we didn't talk about it any further. I don't want to add another thing to clean to my daily regimen. But today as I was making my list of things to pack for vacation and trying to figure out how this will all fit in the car I re thunk getting an Acapella even if it is just for travel. I left a message with Dr. B about it and I have to call back on Wednesday for my culture results. I'll see what she says about getting one. This culture will also determine if I'm starting Caystom or not. I have a gut feeling I will be.

I'm going to browse around the blogs for a while now before bed. G-Night everyone.

Sunday, August 29, 2010

Lucky 13

Thirteen miles. Yes, THIRTEEN miles! The first 6 were strong, 7-10 were ok, and 11-13 were OUCH! By then it was run 1/2, walk 1/2. Even 30 seconds of running my legs were screaming at me. When I first started this endeavor I thought the hard part was going to be getting out of breath but it turns out I've gotten really good at controlling my breathing. And I'm working on breathing in through my nose and not my mouth, although I constantly catch myself using my mouth. No, it's not my breathing, it's the burining sensation I feel in my quads starting at mile 10.

And to think this run almost didn't happen. This morning was one of those mornings I just didn't want to get out of bed. J was up at 4:30 screaming so he came to bed with us, and I can't sleep at all with him in the bed. He kicks and squirms and I wind up sleeping on my nightstand. L woke up at 6:00, which was when I planned on getting up to leave, but I couldn't move. The boys were whining and moaning, just two unhappy campers. My Zune wouldn't turn on and I have no music yet on my IPOD. I came up with 100 excuses not to go running this morning. But deep inside I knew I couldn't let myself down. So I just got up, got dressed, got the boys breakfast ready and headed to the track. Once there I was happy I didn't give into my excuses. Didn't care how long it would take me, but I was going to finish 13 miles. And I did. And I don't even want to think that is 1/2 the distance I have to finish! OUCH!

Wednesday, August 25, 2010

In the 100's club!

I can't even believe it, it still hasen't sunk in. I had a clinic apointment today and drum roll please....

FVC - 5.36 (129%)
FEV1 - 3.71 (106%)

AAHHHHHH!!!! I want to scream!

I didn't really hit me how much of an improvement I have made when I was there and they showed me my results. Only now is it really hitting me! Just take a look all my PFT's from the past 4 years are listed on this page.

I've only been running for 5 months and I can't believe how much it has changed my life. After this marathon schedule is over I'm definately going to stick to running 3 days a week and swimming 2 days.

And strangely enough as much as I am celebrating my accomplishments I'm nervous about my next appointment. I don't want to dissapointmy team or myself. I think my numbers will stay high. I don't know if I'll still be in the 100's club but it feels good to know that I can get there.

I ran 5 miles at the gym prior to my appointment, time - 1hr. I think 5mph is turning out to be my long distance speed. That leaves me finishing the marathon around the 6 hr mark. I don't care... I just want to finish. I shared the news with my team mates and they were all very excited for me too.

Off to dream land now...g-night.

Sunday, August 22, 2010

That didn't go as planned

Miles - 11!!
Time 2hrs 20min

I left for my run this morning in a light drizzle. It actually felt really good to run in the rain, it was very refreshing. Nice and cool out, no blazing sun, however that also means fewer people on the track. Why is that a bad thing? you ask. Well I guess my NYC mentality comes into play in these instances. When the only people left on the track are myself and two shady looking men (and my shady I mean who runs in docker shorts and converse sneakers?) my instinct is to high tail it out of there. So at 7 miles that's what I did. Up until that point I had a really good flow going. Run 2.5, walk 1/2, run 2.5, walk 1/2.

So I drove 15 minutes to the gym. As soon as I took one step out of the car my legs were crying. This was a mistake. Never stop a run 1/2 was through. But I got on the treadmill walked 1/2, ran 1/2, walked 1/2, ran 1, walked 1/2 and so on just to get to that 11 mile mark. OUCH!! My legs were screaming at me all day. At least it's not my knee. Muscle pain usually is better by the next day, that knee pain lasted for about 3.

I won't have anyone to watch the boys tomorrow so I won't be making it to my Monday swim. So I think on Tuesday I'm going to run 3-4 miles and then hop in the pool for a 1/2hr swim. I really want to see stability if not improvement in my PFT's on Wednesday. But with this ever persist ant cough I don't know if that will be the case.

Tuesday, August 17, 2010

I'm back

I've been a bad blogger these past weeks. I just have no time to even sit in front of the computer for even 15 minutes. My house has been bombarded with family and friends, the boys have had play dates, we're planning vacation... I don't think I've had 10 minutes to myself these past two weeks.

Quick update on health...

I didn't shake that cough like I had hoped so I called Dr. W and he put me on 2wks of Levaquin. I have an apt set up for the 25th. If it's not gone by then I know he's opinion will be to start IV's. But (knock on wood) so far so good. I'm already coughing less and I don't find myself clearing my throat as much. Dr. W is a pediatric pulmonologist and is much more aggressive than Dr. B. I love Dr. B but sometimes I need the kick in the ass to get on the right track. And in my experience pediatric doctors are much more aggressive than adult doctors. But hopefully this Levaquin will do the trick. I'm also going to bring up starting Cayston at this apt.

And of corse the running...

Two Saturdays ago I did 10 miles. WoopWoop. However my knee began to hurt, I slowed it down and took as many walking breaks as I needed but the next day my knee felt like someone had smashed it with a hammer. I took off from training for 3 days, then swam and did a short run later that week. I felt fine by Sunday and did 7 miles. Yesterday and today have been CRAZY busy and I haven't gotten to the gym. But I will be there tomorrow.

I need to add hours to the day somehow without getting rid of my 8hr sleep. Some days life is just too crazy. I must get to my vest for the night. I promise not to be a stranger!

Sunday, August 1, 2010


Saurdays Run
Miles - 9 (track)
Time - 2hrs

NINE miles! Wow! A year ago I never would have even imagined myself running 9 miles. I feel soooo good. I got a little later start then I would have liked, around 7:30 but luckily the temperature was around 65* when I started and there was a slight breeze. I found a good pattern that worked for me... run 2 miles, walk 1/2, run 2 miles, walk 1/2 and so on. This way my breathing didn't get too rapid and I didn't cramp up. Around mile 7-8 I started to feel tightness in my hamstring and calf, but was able to stretch it out. I don't want to over do it, I don't want any injuries or to wind up out of breath so I think I'm going to stick with this pattern for my 1/2 in two weeks. I coughed up a little junk on that run, I guess thats to be expected but I'm not too happy about it. I started TOBI so I'll see what I sound like in a week.

Sorry to cut this short but we're off to our annual twin picnic.

Thursday, July 29, 2010

Cough Cough??

Didn’t make my run yesterday, super busy day visiting family. I'm feeling really tired this morning so I think I'm going to have to really push through todays run.

In non running news....Last night I met with the other board members of my multiples group. I’m going to be the president next year and we got together to set the agenda for the upcoming year. This past year I feel like nothing was done for the moms or for the kids. There was one dinner, the two parties and tag sales and that was it. I said I wanted to change that, we should have more events for everyone, so we’re having a pottery night for the moms, two craft days, an Easter egg hunt, a trip to an orchard, and a visit to MyGym for the kids. We are also going to have a photographer come to teach us the basics of photography and a CPR class. I think it’s going to be a good year.

I’m sitting here doing my vest and nebs (shake shake shake), and I’m noticing that I’m starting to cough a lot more than I have been the past few days. August is an “on” TOBI month for me. Maybe I’ll just start tomorrow and hopefully this cough will go away. One good thing about TOBI months for me is I usually do my vest 2X a day. I admit in the “off” months maybe I’ll do a night therapy three days a week. I know it’s not good practice and I should start a better habit of doing it at night everyday. But especially now, when everyone is in bed, kids and hubby, I do a little straightening up and then just want to relax and unwind for an hour with whatever I’ve DVR’d. I know I can use this time to do another therapy but honestly I don’t want to. This is the only time during the day that’s “mine”. And I don’t want to give it up to CF. That being said. I'm going to finish up here put the boys in for a nap and head to the gym.

Tuesday, July 27, 2010

A swim and a run

Cross Train – swim – 27 laps (3/4 mile)
Time – 35min

Miles – 3
Time – 35:10
Avg Pace – 11.70

I’ve really been trying to write every night, but you know that goes – life gets in the way. I’m really happy with my swim on Monday. If I haven’t mentioned it before I love swimming. It’s not strenuous and I find it very relaxing. The one hard thing about it is I often loose my lap count. I get caught up with concentrating on my breathing; my mind starts to wonder and whoops, what lap was that?

This has to be a short one. Just wanted to get my times down before I forgot.

Monday, July 26, 2010

'Race to Cure CF'

Miles - 4
Time 40.12
Avg pace - 10 min/mile (best time)

What better reason to run? And it's no surprise that I crossed the finish line with my best personal time. The motivation, the support and the crowd were outstanding. Dr. G took off like lightning as soon as the horn blew coming in a good 5 min earlier than me. My husband, kids and Dr. G were waiting for me at the finish line cheering me on. I can't put into words the feeling that comes over you when you cross that finish line. Such a sense of personal accomplishment.

It down poured 2 hrs prior to the race, dropping the temperature a good 10 degrees but the humidity was awful. Even with two puffs of Albuterol I was feeling tight. But after the race and a bottle of water I was breathing fine again. I finished without being short of breath and without tight muscles. My little guys jumped into my arms and we enjoyed the BBQ and music. Dr. G introduced me to a few mom's of her patients who said it was great to meet someone accomplishing so much despite CF. That it gave them hope for their own children. Hearing that made me happier than finishing the race. I would love to inspire and motivate other CFers to get out and exercise.

"Every day is a prescious gift, that it why it is called the present"

Saturday, July 24, 2010

Power in numbers

Miles - 2 (track)
Not timed

What an exhilarating way to start a Saturday morning. A 7am run with a great group of women, most who have given birth within the last two years. Two of the women have actually run the NYC Marathon in the past and were telling me about it. The more I hear about the race the more pumped I'm getting about it. I'm probably the newest to running in the group, all the others have competed in marathons or 1/2 marathons and run cross country before. So I have a good group of resources to go to for information. We did a nice paced 2 mile run around the track. Even at 7am though the sun was blazing and it was so humid. I can't wait until the fall. Next week we are going to run the North County trailway, it's shaded and has mile markers so I'll be able to track my time and hopefully not burn in the sun.

Tomorrow is 'Race for the Cure'. I don't want to make the same mistake I did with my first 5K. The excitement of the crowd, my adrenalin was racing and I definately crossed the starting line and a much faster pace then I'm used to which made me burn out at the 1/2 was point and I had to walk for a bit. The downfall to tomorrows race is going to be and heat and humidity. But I have a good friend racing with me, but her pace is much faster than mine so I'm going have to talk her into taking it back a few.

That being said, I'm going to enjot some ice cream and get some rest for tomorrow. Wish me luck!

Thursday, July 22, 2010

Hurricane bath time

Miles - 3 (treadmill)
Time - 35.02
Avg Pace - 11.6 min/mile

Good run today, I was feeling extra inspired. I shared my blog on facebook and met a few great and inspiring people. I even spoke with a CFer who finished his first marathon last month. It's so great to hear other people have overcome some of the same obstacles I face and crossed that finish line! I came across some other CF blogs that I started to read and love them all. I'm loving this new connection to the CF community that this has opened me to.

Tonight was bath night. Giving my children a bath is one of the more stressful times of my day. Let me explain... my kids LOVE the water. I might as well wear a bathing suit into the bathroom because I leave wetter than they get. My bathroom looks like a hurricane passed through when they leave. They stand up, sit down, stand up, sit down, kick as hard as they can to splash the water everywhere. Put their faces under the water and laugh when they come back up with bubbles all over their face. They are constantly unplugging the drain, and filling their toys with water and dumping them over the side of the tub. Because of this I'm seizing the opportunity while it's lasts to just throw them in the shower with either DH or myself. They get maybe one bath a week, and it's the highlight of their day!

I'm pumped for 'Race for the Cure' on Sunday. Hopefully I'll be able to keep up with Dr. G, I'll ask her to go easy on me. Hubby and the boys are coming to cheer us on (and enjoy the BBQ). Rainy Sunday evening, I'll definitely have to bring my albuterol with me for that one.

Wednesday, July 21, 2010

Slow & Steady wins the race

Miles - 4
Time - 46m 0s
Avg Page - 11.5 min/mile

Much better run than yesterday, much more energy. I think I just have to keep my pace slow. I started at 5.2 increased to 5.4 for a while and then back down to 5.2. So although slow and steady won't win the race in my case, it will get me to the finish line, and that's all I'm going for.

So I've joined with 3 other women who want to start running. Our first group run is going to be this Saturday. I'm going just to meet them and do a slow 2 mile run since I have the 4m Race for the Cure on Sunday. I love that I have people to run with now, but the only problem is that I'm at a much more demanding scheudle than they are. Most of the women are casually running 3 miles at the most. Next Saturday I have to run 7! I can start out running with them but would have to finish on my own and depending on where we're running I don't know if I'd be comfortable running alone. This Saturday we are going to the track at the middle school. I'm just going to take it one week at a time and see how it goes.

The weather in NY is horrible these past few days, horribly humid and scattered storms all day. I took L & J to 'My Gym' to burn off some excess energy this afternoon. They had such a blast, running all over the place at lightning speed! J is born climber. He was up and down the slide, climbing on the 'big kid' apparatus, jumping on the trampoline, giving me a run for my money. I'm going to sign them up for classes there in the Fall & Winter. The place is sooo much fun and it would be great to have them get out of the house in the colder months to someplace I can bring them by myself.

Tuesday, July 20, 2010

1/2 way point

Week 15

Miles - 3 (treadmill)
Time - 36m 30s
Avg Pace - 12.1 min/mile

Day one of week 15. The half way point of my 30 week training plan. I was a little slower today than usual. For whatever reason I just wasn't feeling it today. I started out at a pace of 5.4 but had to slow down after a mile and then had to walk for a bit. Maybe I have to continue to start at 5.2 and increase my pace if I'm feeling it.

I looked over the trainig schedule from here to the marathon and it really picks up pace. The first 15 weeks built up to running 7 miles very slowlely, but from here on my weekend runs espcially really take off.

Got an e-mail today from one of the women in the HVHC group. She wants to start running and is looking for people to run with. About 5 people responded to her including myself. I have the most demanding schedule out of everyone, but I may try to meet with her on Wednesday nights and Saturday mornings. The only problem is she wants to run at 8:30 on Wednesday nights. Right now it's still so humid then, I don't know if it would be the best thing for me. But I'm willing to give it a shot. I would love to run with other people.

Not much else is new here. My BIL & SIL are up for the week. Tomorrow if the weather cooporates we're going to try to visit the lake for a bit after my run.

Saturday, July 17, 2010


Miles - 7 (treadmill unfortunately)
Time - 1hr 25min 25sec
Pace - 12.1 min/mile

Wow I did it! Seven miles. Six miles running at a pace of 5.3 and one mile of walking. I was able to make it just over five miles before I needed to walk. Overall I'm pretty proud of myself. After my run I wasn't out of breath, wasn't coughing, wasn't wheezing. I felt incredible. Honestly if you had asked me back in April when I started this crazy journey I didn't think I could finish. I couldn't even run 1.5 miles without a walking break. Now I honestly think I will reach the finish line. No matter how many breaks I need I WILL finish.

This afternoon my in laws were up and we had a fantastic time playing in the pool. The water is warm enough that the boys enjoy it now. L had a blast playing Marco Polo and chasing his Uncle C and cousin D. They are getting more comfortable in the water each day. L especially has improved at going underwater. This fall and winter I'm definitely going to bring them to the gym pool at least once a week so they continue to learn how to swim.

My fundraising for the Marathon is at $225 so far. I'm still waiting on people I expect to donate. I'm going to send out letters this week to some family that aren't on the internet. I also have an idea for a fundraiser but I would really have to get me ass in gear if I'm serious about it.

Tomorrow is our Sunday family breakfast so I'm off to get a few hours sleep.

Friday, July 16, 2010

I run a lonley road

Rest Day - Pool Day!

So tomorrow is my 7 mile run. It's been unbearably humid here in NY so I'm 99% sure I'll be on the treadmill tomorrow morning. I can't wait for the humidity to break. Right now I just really wish I had someone to do my weekend long runs with. I don't mind running solo on my weekday runs, they are usually during the day at the gym anyway when Grandma is able to watch the boys. But on the weekends I get pretty bored & lonely running solo. None of my friends are runners and I haven't found any running clubs up here that fit into my schedule. I even scoped out the roster for Team Boomer and no one is close to me. Coach GP mentioned having team runs a little closer to the race date but I would have to be able to make it into the city. A running partner provides motivation and support to keep going when you want to "just stop for a little bit". Being new to the sport and not yet having a true passion for it I think I really need someone to help emotionally.

I met up with a few of my mom friends at the beach this morning before it opened. It's such a beautiful way to start the day off that we all decided to meet there every Friday morning. The only problem with the beach is that to get there you have to walk down the steepest hill imaginable. Not only do I have to walk down it, but I have to get a wagon with 50lbs of children and all of our beach supplies down this hill. And while using all my strength to hold the wagon back, my children find it amusing to toss things from it. But when we finally got to the sand the boys were in their glory. J ran straight into the water, practically up to his neck, that I had to drop everything to run after him. I swear that child has no fear.

I'm off to go eat some carbs, get some sleep and see how I make out tomorrow.

Wednesday, July 14, 2010

Three miles, no problem

Miles - 3 (treadmill)
Time - 35m 23s
Avg Pace - 11.6 min/mile

I'm getting used to the three mile runs. I don't feel out of breath and achy during or afterwards anymore. I think next week I'm going to attempt to increase my running pace to 5.4 for my short runs. I still have doubts about 26.2 every time I think about exactly how far that distance is but I'm pushing those thoughts to the back of my mind and just keep pushing myself. I haven't not met my daily goal yet, even if I have to walk for a few miles I've promised myself to meet my daily goals. I have so much to inspire me to keep going. Pushing through a 1/2hr run by far beats 2 weeks of having a PICC in my arm. Dr. B gave me an albuterol inhaler to use before I run especially since it's been so humid in the northeast this past month. I've had to run at the gym on the treadmill for most of my training so far because of the humidity here. I'm really hoping that at least for my long weekend runs I can take them outdoors soon even if it's at 7am.

I finally set up my First Giving donation site. (Check out my widget to the right.) I still have to send out some letters via snail mail to some family members. Put that on my weekend "to do list", as if it's not long enough.

This evening was the first meeting for the runners on Team Boomer. I dialed in since I couldn't make it to the city to be there in person. It was very encouraging hearing everyone's personal stories about why they are running and why they choose Team Boomer. There was one other person who actually had CF and this is going to be his second marathon. He gave me hope that this is an obtainable goal, I don't know if I'll be doing another marathon but who knows, let's see how this one goes first!

Tuesday, July 13, 2010

Time for a change

The story on how I got myself into this...

The year following the twins birth was a rough one, for a multitude of reasons

1. There was two of them and one of me
2. I was breastfeeding & chose to be off TOBI
3. I had a C Section & was on IV immediately after delivery for 3 weeks
4. We had to limit visitors early on because of their prematurity
5. I wound up with kidney stones
6. Got the flu in July '09 for the first time ever - 2 weeks of home IV
7. Boys both got RSV in Dec '09 and I wound up sick - 2 weeks of home IV

I could go on but you get the point. I wasn't sleeping well for a long time. Fitting in two treatments a day was impossible. July '09 my lung function was the wost I've ever seen it, but I wasn't feeling well and thought I would get back to my baseline once the first year was over. I just didn't have time to think about anything other than the babies at that point in time. I was getting by doing the bear minimum vest & nebulizer treatments. I had very little energy to do anything and looking back I was probably somewhat depressed feeling "trapped" inside my home that first year. It was extremely difficult to go anywhere alone with two babies. It was near impossible to go even food shopping with two infants in carseats. I was very lucky to have my mom with me to help while DH was at work. But I'm getting side tracked here

After my 2 weeks of IV's in December '09 something clicked inside me and I knew I needed to get my butt in gear somehow. My lungs weren't magically going to get better on their own without some hard work on my part. Every now & then I would log on the CF Forums and there would be post after post about how another CFer had lost their battle. For the first time I was actuallly scared for my future. I was angry at myself for not trying harder, for underestimating what CF can do in such a short amount of time. I want to live, for myself, for my husband, for my children. And not just live, I want to have energy, run with them, dance with them, play with them. I woke up one day and joined a fitness center and began swimming again. For the first time in probably close to 7 years I was exercising again. Slow at first, I would swim freestyle one lap then have to breast stroke one lap. I think I might have done 8 laps that first swim. By April I was swimming 12-15 laps only slowing with a breast stroke every 3rd lap.

In April my friend Joe asked me to run a 5K with him in June. I thought no problem, I could build up to that by June. The following week I was on the CF Forums and saw a post from Jerry Cahill about spots on Team Boomer for the NYC Marathon. I didn't respond that day, but I couldn't stop thinking about it. And I don't remember when but I called my good friend Dr. G (my CF peds) and she told me to go for it. She is an avid runner herself. I called Jerry and signed up for Team Boomer. Looked on line and found a good training program I thought I would be able to follow and here I am now, almost 1/2 way there. I cross train by swimming and can now swim close to 3/4 mile freestyle! I'll get further into details about how I physically felt the first 1/2 of training in a later post. I must call it a night.

Monday, July 12, 2010

Let's get this started...

My first post... where to begin. Well I'm 29 years old and was diagnosid with Cystic Fibrosis when I was 9 months old. I'll try to sum everything up quickly.

For my fellow CFers who may be interested my mutations are DF508 & C3272-26A>G. I am pancriatic sufficient, however didn't know this until I hit middle school. I had been on enzymes up until that point. To this day (knock on wood) I have never been hospitalized for CF. It wasn't until I hit college that I went on home IV antibiotics for the first time. I have been on them 8 times in the past 10 years. I've had one sinus surgery and it has helped tremendously. .

I married the most wonderful, supportive man in 2004 and we have 19 month old twin boys (L & J) who are my world. There will be plenty of posts about them I'm sure, as they are the center of my world & take up 99% of my time right now!

I'm currently training for the 2010 NYC Marathon. How that happened in a later post. For now that is what this blog will most likely be about - getting these CF lungs to that finish line and the journey it takes to get to the starting line.

I invite you to follow along with me..