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November 15, 2011
The past several weeks have proven busier than ever, whereas I hoped after such a busy and successful fundraising season that I would have a little bit of a lull around this time of year. Needless to say, amongst a stretch of 60+ hour weeks seeming to be the norm, my exercising has fallen a bit off schedule to not getting much at all.
While I’ve been fortunate enough to be keeping my lung function steady, I can definitely tell that my general energy level is down, my stress level is up, and my sense of living the CFLF mission is askew. In the past few weeks, I’ve been trying to mentally gear myself up for the winter months ahead. I’ve committed myself to a 25,000 vertical foot hiking challenge by the end of Winter, a bit of a ‘climb’ from last years 15,000 climb in snow. I confess, I’ve been having trouble motivating on it.
I know winter is the hardest season to not only stay motivated, but to stay healthy too. For me, there is nothing better than the outdoor air to escape the feared frenzy of germs that may be trapped inside all the closed windows. Each year, I set an end-of-winter snowboarding trip out west with friends that is my incentive to push myself physically through the darker months. I KNOW that if I am not in top shape for that trip, it can be extremely painful physically, and also presents much greater risk of serious injury. So I do everything I can to be in top shape for that trip, which gives me the benefit of better overall health and lungs in an otherwise cold and dry environment.
So with my struggle to hit the uphill, in anticipation of the downhill, I have developed more strategy to my approach. This year, especially with ever so quickly falling out of shape, I am strategically building myself back up. Core strengthening (pilates) provided me such an incredible advantage in my snowboarding last year, and is a class offered at my gym that also offers comradery in the pain of excruciating ab, back, and leg workouts, but accountability as well. “Where were you last class?”
I’ve been on this for a few weeks now, and definitely feeling a difference. Hopefully the all-women group will stop calling me ‘cupcake’ once I shake this dang muffin-top (yes - love-handles! I know! All those years of being a bean pole with CF - who’d have thought!) Talk about incentive!!!
So today was over 60 degrees here in the Green Mountain state, and after being glued to my computer for almost a week of such weather, I committed to myself that I was getting outside today! Well, I did it! It was on 4:30 when I pulled back from the desk, and sad to say, already dusk outside. I threw the mountain bike on my car roof, and headed the few miles down the road to some local trails I’ve taken a liking to in the “Bristol Waterworks”. I’ve ridden them a lot, and felt fairly comfortable in the dwindling light.
The burn was there, and despite having dropped to 49 degrees by then, the sweat was also there. It is now a little after 9pm, and I’m glad to report that much of leg/ab pain I’ve had since the last the pilates class, and general low back pain from the desk are greatly relieved. Not gone! but relieved.
So as I learned from a wise man years ago, and just recently shared with a friend last week, I will remind myself of in sharing with you “Motivation does not necessarily precede action. Nor does it need to. However, you will often find that motivation DOES come both during, and as a result of action”. Therefore, I contend that it is sometimes through commitment and discipline that the spark toward action is ignited.
When the temps make it too cold to ride, I will again be taking steps upward in achieving my “Vertical Challenge”.
Be well,
Brian
October 10, 2011
About a month a half ago I had a follow-up appointment with my CF doctor to check on a cold I had had at my last visit. When I had seen her a month prior my numbers had been down, which hadn’t come as a surprise since typically when I
am feeling terrible, I know that my numbers will be down as well. At that time I was put on antibiotics and told to up my treatments (The Vest, and my nebulized medications) to three times a day, I typically do them twice a day.
So for the next month I not only did all the things my doctor had told me todo, but I also decided to start running 2 or 3 times a week. Running is something I did regularly in high school and college through organized sports, but not something I had been motivated to do on my own in the last several years. I typically hike every day, do yoga, and bike as much as I can, but running has always been something I’ve really had to push myself to do. I began running in the morning, a few times a week for 20 minutes, after doing my morning treatments, and was starting to feel really good when it came time for my follow-up appointment. I was (for the first time in a long time) really excited to see where my lung function scores would be. I was convinced they would be higher than ever, and was incredibly disappointed when they were almost exactly the same as they had been the time before, when I had been sick. I was discouraged to say the least. I told my doctor how great I had been feeling and that I was shocked my numbers weren’t higher. She said if I’m feeling good, than I should keep doing what I’m doing, and that the numbers weren’t everything.
As others with CF know, it’s hard to not take those numbers very personally when you feel you deserve better. As with everything, you always want your hard work to pay off, and when it doesn’t you can’t help but ask yourself why are you
doing all the things you are doing? What is it all for? In the past I feel like I would have been so discouraged that I would have backed down, or possibly given up on doing all that hard work. This time I decided to push myself further. Instead of
running 2 or 3 times a week for 20 minutes I began running 5 or 6 times a week for 30 minutes. I haven’t yet been back for another appointment, but I will say that for the first time possibly since high school (when I was at my healthiest) I am feeling
my lungs on a whole new level. When I take a deep breath in, I feel air being moved in places it hasn’t been able to get to in a long time, and it feels amazing. Even if my lung function scores haven’t sky-rocketed when I go back in next week, just feeling
this healthy, and this strong, and knowing that I am doing EVERYTHING I can be doing, is good enough for me.
April 18, 2011
February 23, 2011
March 4-11, 2011
Seven friends will be converging from VT, MA, MD, OH, CO and CA on Wyoming for some extreme skiing/boarding. With the donation of a time share used for accomodation, each group member will have the opportunity to make a donation to CFLF in lieu of accomodation costs.
The one-week trip will encompass several days at Grand Targhee Resort, a few days at Jackson Hole, and an afternoon of backcountry Cat-tours.
I have been taking snowboarding trips out West for several years, and it really is my inspiration for the entire winter to challenge myself as much as I can physically. This trip is a real incentive for me to be at the top of my game by having both my legs and my lungs in as best shape as possible. That is definately not something I can crunch in the last two weeks before the trip, but is something that needs to be steadily maintained througout the whole winter.
Last winter, I wound up being sick repeatedly, and therefore did not nearly do enough hiking, snowboarding, XC skiing, swimming, or yoga & pilate classes to be in the shape I needed to be. I regreted this most when in one of the back bowls of Aspen Highlands (one of the steepest terrains in the continental US). Oh yeah, that was after hiking the last 800 vertical feet to the almost 12,000′+ summit. I hurt and suffered more than I enjoyed the challenge before me, and VOWED that I would not let myself be in such poor shape for this trip again.
This year, as I mentioned in my last post, I have hiked over 11,000 vertical feet since November 2010, and have XC many many miles in the fields near my home. In the past three weeks, I have been attending yoga classes again (for the first time in 3-4 years!), and started going to Pilate classes for the first time to work on stregnthening my core muscles. Not only has my mind set been extremely positive with this incentive looming months ahead of me, but with all of the exercise and fresh air, I have not been sick once this Winter (knock on wood!!!)
I feel ready and pumped to hit the backcountry of Wyoming! The past 36 hours has brought over 40″ of snow to Grand Targhee, and I know more will want to dump while we are there! The positive vibrations and energy of the group create a sensation of “floating on the freshies” that will last me well through the Spring and into the Summer.
Nevertheless, I have worked WITH my cystic fibrosis to get myself to this good of condition. I have recognized over the previous few months when my body needed rest, or when preventative antibiotics might be a good idea, or when I should be getting out to work my lungs as much as possible just because it is a beautiful snowy day.
Having friends who know of my CF, and support what I do to help myself and to help others is incredibly important. They create for me a sense of accountability that has two options: 1. I ignore and neglect the physical needs of my CF and try to lead a ‘normal’ life and wind up sick and out of shape; or 2. I attend to my CF needs, respect my limitations (while still pushing them) and accept CF as part of who I am and what I need to do to be able to lead a ‘normal’ life. I choose #2, and with CF at the forefront of my choices, I will enjoy some incredible moments on the slopes with some amazingly true friends.
Much of the skiing and riding will be captured on video, or by a professional photographer. So please keep checking in for some reports on the trip.
Thanks always for your read!
February 21, 2011
Last Saturday I snowshoed 3.4 mi and 2583′ up Camels Hump and snowboarded down. 30 deg at base, near 0 near summit and windchill at summit near -20 deg. The total up and down took about 7 hours. We definatelyf were the slowest on the trail… but that just meant all the longer of huffing, puffing, and sweating. It hurt so bad in such a good way!
I have been tracking my hiking in vertical feet since November of last year. To date, since the start of tracking this, my total has been 11.627 feet hiked or snowshoed (chairlift rides not included). I just want to see what I can accomplish total for this winter season before setting a goal for next. Let’s see if I can hit 15,000 climbed by April?
November 4, 2010
October 18, 2010 - Foundation Care Pharmacy announced that it has become a Corporate Sponsor of the Cystic Fibrosis Lifestyle Foundation (CFLF).
As a specialty pharmacy focused on serving those with cystic fibrosis (CF), Foundation Care understands the complexities in a patient’s daily life. Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). Foundation Care provides CF patients with focused care, specialized medications and devices, disease management, and the highest standard of customer service.
The Cystic Fibrosis Lifestyle Foundation aids individuals with cystic fibrosis in creating healthy and active lifestyles through recreation. Through Recreation Grants, the CFLF educates adolescents and young adults with Cystic Fibrosis on the critical psychological, social and emotional connections between their lifestyle and their health. So far, 100 Recreation Grants have been made to people living with this chronic lung condition.
Foundation Care ‘s sponsorship aims to help people with CF live stronger and longer lives to hopefully one day see a cure.
About Foundation Care
As a full service pharmacy, Foundation Care continues to provide the most up-to-date medications while working to make our patients treatment easier and more affordable. Located in the Saint Louis, MO area, Foundation Care serves patients locally and nationwide. For additional information, visit www.FoundCare.com or call Foundation Care at (314) 291-1122.
October 25, 2010
“Until one is committed, there is hesitancy,
the chance to draw back, always ineffectiveness.
Concerning all acts of initiative
there is one elementary truth,
the ignorance of which kills
countless ideas & splendid plans:
That the moment one definately
committs oneself, then Providence moves too.
All sorts of things occur to help one
that would have otherwise
never have occured.
A whole stream of events
issues from the decision,
raising in one’s favor all manner
of unforseen incidents & meetings
and material assistance,
which no one could have dreamt
would have come their way.
I have learned a deep respect
for one of Goethe’s couplets:
“Whatever you can do, or Dream you can…
Begin it.
Boldness has Genius, Power & Magic in it”
W.N. Murray - 1951
March 9, 2010
 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
February 15, 2010
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
January 21, 2010
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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