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CFLF Blog http://cflf.org/blog Just another WordPress weblog Wed, 10 Mar 2010 04:01:47 +0000 http://wordpress.org/?v=2.7.1 en hourly 1 Ouch!! http://cflf.org/blog/?p=61 http://cflf.org/blog/?p=61#comments Wed, 10 Mar 2010 03:56:35 +0000 admin http://cflf.org/blog/?p=61
Telluride 2009

Telluride 2009

Two Friday’s ago, snowboarding at Stowe, VT…

It was our second run of the day, and I had sat down to wait for a few of our group to catch up.  While I was waiting, I was eyeing the lip of a trail to jump into the next trail we were turning onto.  “Mary!  Is it clear?” I asked.  “No, not just yet… ok, you’re clear.”  I stand up to catch some mild air, and STOP — no jump for me…

As I stood up, my low back just went out, and all of my torso, hip and butt muscles went into absolute lock down.  “You’ve got to be kidding me.” I said to myself as I slowly skidded over to Mary.  I knew the instant it happened from painful times past that one of my “L” discs was not too happy.  I tried to brush it off and took a break and then a couple more runs taking it REAL easy.  

Yet, in my mind I was furious… “I can’t believe this… I’ve just been getting back in to shape and feeling really good again.  That’s it?  I’m now on the sidelines for a while.  What, 4 weeks? 6 weeks? No way am I done snowboarding for the season.  Aww… I’ve got a trip in two weeks to Colorado with the guys to hit the Powder of the West!  No, way!  I’m not letting this take me do…ooowwww… owww.. ohhhh yeah, that hurts!”

With over a decade of chronic back pain ever present in my daily life due to a compression fracture in T-11, I have pain management strategies in place for accute exacerbations.  However,  if this is a disc issue, it WILL take more than two weeks to resolve.  Well, it has been 12 days, and my departure for Colorado is scheduled in two days.  I have been pursuing aggressive chiropractic and acupuncture treatments with significant improvement. 

This past weekend and tonight I visited the kiddie-pool at the gym, which is shallow and kept at a balmy 92 degrees.  With floats under my calves and a noodle under my back and arms, I just lie there completely free of gravity and just focus all I can on relaxing every possible ounce of tension on my radar.  While over the weekend I played with some light yoga (child’s pose and downward dog), tonight I did some stretching. 

The general concensus is that when I stretch and engage the muscles to get the blood flowing to them, the more they tend to relax and be less painful.  I would say at this point my pain has gone from an initial 9-10 down to a 5 or so.  The most painful part of this process has been coughing, especially during chest PT.  But I dare not back down on airway clearance, especially if I’m not doing my regular routine of exercise.

So unless something between now and 12pm Thursday puts me in complete muscular lock-down again, I will be making the push to hit the slopes.  I will obviously be much more conscious of my movements, and cautious to hit the steeps until I am comfortably warmed up, and confident in my agility.  While I have significant fears of the possible repercussions of this injury becoming worse, I am choosing to focus on the positive, and believe that the exercise is going to be better for me than worse. 

If possible, I will post an update of how it goes from CO.  But if not, I will report back upon my return, hopefully still vertical and breathing! 

Peace out!

B

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Gettin to the gym… http://cflf.org/blog/?p=55 http://cflf.org/blog/?p=55#comments Mon, 15 Feb 2010 17:25:25 +0000 admin http://cflf.org/blog/?p=55 So I FINALLY got a gym membership last week, as I have been promising myself for months.  The winter months are always precarious for me to have a consistent workout schedule.  As I much prefer the outdoors to working out inside, the cold and lack of snow this year have just made outside less than desireable. 

Following the advice of my brother Mike (34 w/CF), which has come full circle from my advising him on the same years ago, I am pursuing swimming as my primary workout, and doing weights, elliptical, and/or bike as secondary.  I have been five times since last Wednesday, and feel such a tremendous difference in my lungs already.  Being sick in early January really took a toll on both my energy and my spirit.  The thought of “what if..” that started to circle around in my head was exactly the kick I needed to stop making excuses about why I haven’t been exercising as much as I would like to be, and just doing it!

Can I afford it?  When can I make time for it?  Am I going to stick with it?  Are my injured shoulders going to start flaring up again?  Whatever… just do it! 

So I did.  And it has reminded me so clearly of why we are doing what we are doing.  The improvement in just days that I feel in my lungs is remarkable.  I don’t wake up with a slight rattle, or desire to cough anymore.  I’m spitting stuff out more throughout the day, that just was hanging out in my lungs before.  I have more energy, and sleep better.  I can focus better on my work, not feeling the guilt that I “should” be working out more. 

It’s amazing how swimming has come back to me, from when I used to swim competatively in high school.  The breathing, the rythm, the reaching, the pace.  I am quite lucky that I grew up learning to swim, and know how to do   I’ve started with 100m of free-style for warm up; stretching; 100m more of free-style; 100m of breast; 100m of side-stroke (50m per side); 50m of back stroke; and 50m cool down free-style. 

I know this isn’t an incredibly heavy workout, but I am starting soft and building as I go.  My shoulders have felt good, my lungs have felt better, and the muscle pain of getting back in shape is starting to go away.  I’ve got a good start, and look forward to it each day.  I need to spend some time on creating a workout schedule, and try to pace myself from not over doing it. 

Someday the snow will return to VT, and I’m hoping to be ready for it!  And if not, I may have to go chasing snow-country in Virginia… or Texas?  Until then, we’ll see if I can grow some gills! - Peace, Brian

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Thank you CFLF! http://cflf.org/blog/?p=52 http://cflf.org/blog/?p=52#comments Thu, 21 Jan 2010 17:18:28 +0000 admin http://cflf.org/blog/?p=52 Dear CFLF,

It’s Allisons mom, Amie.  I know you haven’t heard from her in a while, which is because she has been so busy with all the sports shes participating in.  Her basketball season just finished up, I don’t want to give it away how well they did (or didn’t do) I am going to leave that up to her to tell you.  However, I wanted to share with you the letter from her basketball coach. 

     It reads: Allie You are a great leader and a support to your teammates.  (And a gifted writer as I was reminded the other day!)  There were several times you inspired me this year without knowing it.  In spite of any medical challenges you may have experienced, you never complained or made any excuses and kept working.  I have alot of respect for you as a player and a person.  Thanks for playing basketball this year.- Coach Steiner
 
 I just wanted to share that with you.  I am so proud of her, and I know that your kind words of encouragement mean a lot to her - they help keep her going.  I wish that you could see the day to day Allie, she is a blessing from heaven, and her dad and I thank God for her everyday.  She has been felling well - no broken bones recently, and only 1 round of antibiotics in the past 6 months.  Basketball wasn’t easy for her this year, they really stepped up the competition, and I don’t think she was fully ready at first, but she really pushed herself.  Sometimes too hard - she did have 1 really bad asthma attack that set her on bed rest for 2 days after, and the antibiotics were at thanksgiving so she missed a week of basketball, and the coaches called everyday for updates. 
 
So, I appologize that Allie hasn’t written lately.  It’s really not her fault.  This CFLF grant has given her so much opportunity to believe in herself, and I just wanted to thank you again!!
 
Sincerely, 
Amie Davis 
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CFLF Annual Business Meeting 2009 http://cflf.org/blog/?p=49 http://cflf.org/blog/?p=49#comments Mon, 09 Nov 2009 01:42:53 +0000 admin http://cflf.org/blog/?p=49 Today held the second Annual Business Meeting for the CFLF Board of directors.  The four-hour meeting held testimony to the tremendously committed team that makes up our Board.  I am very excited to welcome Debra Maloney-Evans and David Theran as our newly appointed Board members.  In reflecting upon the impact CFLF is having on those living with CF, David summed it up very nicely:

“Although the CFLF is a fledgling non-profit, in just a short time the organization has managed to carve out a very unique niche in assisting in the fight against CF.  Through the variety of activity grants that are awarded to its recipients, the CFLF is providing a sense of accomplishment for so many afflicted with the disease through a means that immediately impacts the recipients’ lives.  Science will always be an integral component to defeating the debilitating effects of CF, but for those who ski the slopes for the first time or enjoy the once-unattainable gym membership, the tangibility of the recreation grants provides a new sense of hope and accomplishment.  The promotion of active lifestyles by the CFLF in conjunction with success of research-related CF causes will ultimately lead to longer and stronger lives for those with CF.”

While today’s meeting accomplished a great deal, and covered a lot of ground, it is clear that we have our work cut out for us in bettering the organization in our future growth.  With high hopes of economic up-turn in the coming year, we hope that you are able to support the mission of CFLF to the best of your ability, knowing the direct impact it will have on the lives of those with CF.  Thanks always!

Brian

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Drink Rapscallion hosts CFLF Fundraiser at Flatbread Pizza http://cflf.org/blog/?p=23 http://cflf.org/blog/?p=23#comments Mon, 10 Aug 2009 16:59:52 +0000 admin http://cflf.org/blog/?p=23 RapscallionJuly 29, 2009 - Thank you to Peter, Cedric, Nathalie, Mark and all the folks at Rapscallion for organizing and sponsoring a wonderful event at the Flatbread Pizza in Bedford, MA.  Rapscallion featured their “Premier” Ale, a deep golden Belgian-inspired ale. The flavor is a mixture of sweetness with some fruity undertones, spiciness, and a light, underlying bitterness.  It was awesome!!  100% of Rapscallion beer sales for the evening was donated, with Flatbread matching up to the first $500. 

All in all, the night was a great success.  The $1000 fundraising goal for CFLF was broken, Flatbread had a much busier evening than usual for a Wednesday night, and Rapscallion was able to introduce there amazing beer to a bunch of new people. 

We look forward to doing future events with Rapscallion throuhout the NorthEast.  Please check them out at www.DrinkRapscallion.com 

Dave Theran, Cedric Daniel, Brian Callanan, Peter Daniel

Dave Theran, Cedric Daniel, Brian Callanan, Peter DanielLtoR: Nathalie, Peter, Shannon, Brian, Mark, Cedric, Dave

LtoR: Nathalie, Peter, Shannon, Brian, Mark, Cedric, Dave

LtoR: Nathalie, Peter, Shannon, Brian, Mark, Cedric, Dave

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2009 Champ’s Challenge http://cflf.org/blog/?p=16 http://cflf.org/blog/?p=16#comments Sat, 25 Jul 2009 14:22:14 +0000 admin http://cflf.org/blog/?p=16
40-mile group

40-mile group

This years Champ’s Challenge for CF was a great success raising over $7,200!  Sunday, July 12th could not have been a more beautiful morning to ride - 70 degrees, sunny skies (breaking a 60-day rain streak) and gorgeous views of the Adirondaks, Lake Champlain, and Green Mountains brought a wonderful day for 70 people.  Steve Trull and Erin Evans led the 40-mile figure-8, while I, Brian Callanan, and Shannon Moulton led the 7-mile group.  Everyone had rave reviews on a spectacular course (with the roads virtually to ourselves), great signage, break stations and amazing cookout put on by Basin Harbor Club right on their North Dock! 

I can’t say enough about the committment to detail and planning of the organizing committee - Steve Trull (Event Chairperson & Board Co-Chair), Michelle Everleth (Task-master), Alex Geller (ChampsChallenge.org designer), Deb & Peter Evans (water stations & volunteer coordinators), Ross Evans (Media master), Erin Evans (All the loose ends) and myself met weekly for months trying to design and implement bullet-proof logistics.  Thank you all!!

Our sponsors also provided tremendous support in many ways that also contributed to the success and possibility of putting this event on - Basin Harbor Club, Ski Rack, North Star Sports, Key Bank, Lavoie Dental, Merchant’s Bank, Green Mountain Coffee, Jelly Belly, Local Motion, Hannafords, Shaws, Grand Union and Northend Hardwoods - we thank you each for your support and contributions to Champ’s Challenge for CF and hope for your continued support!

While I hope I haven’t forgotten anyone, I want to also reflect a bit on the significance of your participation in this event.  While this summer has not afforded much cycling time, and the 40 mile ride would have been quite a challenge for me (thanks for having me lead the 7 Steve :), I also recognize the perspective of you riders coming out for a fun ride, and to accept this challenge in support of those living with the daily challenge of CF.  While I have grown up with the daily regimine of medications and therapies, there are times of painful hill-climbs as well as flats with a steady pace.  Although I have practice of stepping up to the challenge everyday, there are still times of fear, distain, and mental struggle of ‘can I do it?’.  But like riding, you get on the bike, you pedal, you move, and eventually you get there.  Sometimes it is fun, sometimes it is scarry, sometimes it is painful, sometimes it is just work.  But while riding in a group can perpetuate great energy and a comrodery of shared experience - the challenge of CF does not allow for such luxury.  It can be a lonely path that might be supported by loved ones, but the risk of infectious bacteria in the lungs of CF patients prohibits the opportunity for interaction with those that share the same challenge. 

Point being, your coming out to step on the bike, and accept Champ’s Challenge for CF helps create the energy (and the funds) to help those with CF keep pedaling.  I feel so incredibly gifted with the opportunity to generate support and provide activity as a lifeline to others with CF whose ride inherently has a bit more of an incline - even on the flats!

Thank you, thank you, thank you again to all of you for coming out, and I hope we will see you again next year on July 11th at Basin Harbor for Champ’s Challenge 2010!! 

Remember to check out our slideshow as well —

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Breathe Deep for CF - Boston! http://cflf.org/blog/?p=10 http://cflf.org/blog/?p=10#comments Tue, 02 Jun 2009 03:03:21 +0000 admin http://cflf.org/blog/?p=10 Breathe Deep BannerBreathe Deep for CF!    I would personally and publically like to thank a good friend, Dave Theran who put sooo much in to making this event a great success.  After a friendship that started in high-school, and taking a way too long break, Dave and I reconnected on developing this event.  Having tallied all the numbers, our first attemt had a reach to over 200 people, and generated almost $5000 towards helping provide healthy and active lifestyles to people with cystic fibrosis.  Breathe Deep for CF! Thank you to all who attended and supported this event! A wonderful time was had by all in raising awareness and $5000 in a night of fun!

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Tiasmichaelblanchard_cflf_04_6725michaelblanchard_cflf_03_6721

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The New CFLF.org! http://cflf.org/blog/?p=3 http://cflf.org/blog/?p=3#comments Tue, 19 May 2009 00:23:05 +0000 admin http://cflf.org/blog/?p=3 brian1

Wow, I can’t say enough about this new site, except  THANK YOU!!!  to JEG Design and Compass Corp for your support and ongoing innovation of our ‘cyber-office’.  I am still trying to wrap my head and hands around the abilities we have to now stay more in touch with you, our visitors, grant recipients, donors, friends and family of others with CF, and now the international community of CF.  As we all know, the difficulty of establishing a CF community with preventative infectious control measures find even greater importance on having more and more online resources for support and outreach to the broader CF community.  Please check in regularly, and feel free to share your interests and feedback regarding this site, the programs and mission of CFLF, and ways you think we could improve, or that you might be able to help.

Thanks so much for your support, and please also join or CFLF e-news list by clicking on the link at the bottom right of any page within the site.   Be well, stay strong, and live long!

Brian

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