Am I the oldest person with CF?

Thank goodness there are plenty of people with Cystic Fibrosis older than me! What you do with your cystic fibrosis differs wildly. But no matter what you do the odds are generally against you. Some people have a career and family and that keeps them strong and motivated to be compliant and fight CF. I plan adventures and that motivates me to keep fit and healthy. Having a dog helps me get out thehouse  hail rain or shine for a decent walk with plenty of hills each day, or even a paddle in my kayak (with dog!). My adventure planning motivates me to ride my bicycle everywhere everyday around town – even though I now use an electric bike it still makes me cough (I consider the power the equivalent to a permanent tail wind).But just to answer he question, here is the graph for Australia in 2012.  I still have room to move at 48.I did see a graph indicating lung function decline, and that is more worrying. Hardly blowing 35% of expected is not a good place to be but I’m coping with it quite well. According to the below graph it is just about where statistics would project me at.

http://www.coughing4cf.com

The Old Man and the Race to a Bed

I was finally having serious misgivings. I had left the albergue early and hoped to get some distance before it got too hot. I had come to the final kilometers of the Camino Frances. Unfortunately, so had hundreds of fellow travelers. Most of them were in better shape than I was because their loads were … Continue reading →

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"Please help," the nun said.

It is Holy Thursday, the day Christians celebrate Brotherly Love and the Eucharist. It is also the day I went 30 km. east to Carrion de los Condes to be shown which key goes in what lock and how to start up the washing machine without taking down all the lights at the Santa Maria Pilgrim Albergue. Usually the Sisters of St. Augustine run the place with clockwork precision, but they are all on retreat for Holy Week. For two weeks, two groups of volunteers are stepping in. Big groups of smiling, guitar-playing Spanish Roman Catholics, some of them priests and nuns themselves.But on Sunday, Easter Sunday, something slipped in the schedule, and somehow one group is leaving before the next one arrives. And so Sister Mariel phoned me up last week and asked Please Can You Come Over and stay and help out? It´s only an overnighter. Come over Easter morning, stay til the relief crew arrives on Monday, sometime on Monday. Come over on Holy Thursday, Mariel said, and have MariCarmen show you over the place. No problem. Come in the morning, she said, and while you´re in town Father Julio can hear your confession in English!”Please help,” the monjita said. And so I went. A smiling group of Madrileño volunteers met me at the door, lay members of the Trinitarian religious order in Alcorcon, outside Madrid. I walked in at about 11 a.m. for a quick run-through, and was told I must stay and help process the incoming pilgrims. Most of the pilgrims this week have no Spanish, they said, and none of the hospitaleros have any English.  They asked so nicely. I didn´t have a whole lot else to do. So I stayed. I did not walk out again til the bells clanged and jangled next door to announce the 6 p.m. Mass.In the hours between we registered 44 pilgrims, sang to them, blessed them, counted out coins for the laundry machines, run them through the rules and the hours, mopped up flooded showers, started the desserts for the communal dinner (all the restaurants are closed for the holiday), and ourselves ate, in shifts, a hearty takeout lunch with the Trinitarian and parish priests. We ate out of takeout containers, perched on lawn chairs, hunkered over trestle tables out in the garage.I spoke a lot of Spanish and a lot of English.The afternoon passed fast.I remembered how nice it is to be a hospitalera in an albergue. It is a calling, a time-honored ministry. It is also exhausting. The pilgrims coming through the door were done-in by the spring sunshine and long miles, but the hospis were just as wrinkled round the eyes. Their many trips up and down the stairs and the long nights spent sleeping beneath a tower full of bells weighed on their features.Still, their patience, at times, was Job-like. Their love was brotherly. At one point, a foot-washing even broke out — the non-symbolic, Epsom-salt kind. We laid our hands on the sick, we fed the hungry, sheltered the travelers, we told a couple of transients sure, they could get showers before they caught the bus south. (When a pilgrim arrived with no money, they paid his five-Euro fee.)And me, I spoke. I communicated with people whose exotic languages I´ve only encountered in Ikea furniture-assembly instructions:  French people, Poles, Finns … Canadians, even! I learned what they needed and I turned it into Spanish for the Trinitarians. Unburdened by the rules of grammar, I spoke with the tongues of Men and Angels.I shared the Good News of a clean bed and dinner. The nun asked, so I said yes. Now I am knackered.And that was just the quick run-through.

http://moratinoslife.blogspot.com/

The Way of CF now available on line!

Well, I am amazed! We have The Way of CF available on Amazon UK and US (links below). You can now have a full colour large format paperback book (100 pages, size of A4 paper roughly) to read about The Way of CF, walking the El Camino with Cystic Fibrosis!Though you can find it on Amazon I suggest you buy it right from the source, which is CreateSpacehttps://www.createspace.com/4717792 – and a $5 DISCOUNT COUPON for that link: G5K525BBIf you live in Australia, I am keeping some in stock and can mail them out for any donation (see button below) of AU$20 or over. Any profits/donations are of course used to fund books that I donate to CF Associations or use as gifts to people with Cystic Fibrosis. And when details of  the 2015 Bibulmun Track become available, 1000kms hike through Western Australia, funds may be used to help fund postcards etc for that trip – watch out! Anyone who has a suggestion for a name for that fundraiser leave a comment or email bibulmun@cotu.biz ! PLEASE LEAVE A REVIEW OF THE BOOK ON GOODREADS or AMAZON!https://www.goodreads.com/book/show/21543033-the-way-of-cfhttp://www.amazon.com/The-Way-CF-Santiago-Fibrosis/dp/1497361095http://www.amazon.co.uk/The-Way-CF-Santiago-Fibrosis/dp/1497361095

http://www.coughing4cf.com

What Are YOU Waiting For?

” . . . What then? Shall we sit idly down and say, The night has come; it is no longer day?? The night hath not yet come; we are not quite cut off from labor by the failing light. Something remains for us to do or dare (Even the oldest tree some fruit may bear) … Continue reading →

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Andy’s Handshake

During my 500 mile walk on the Camino de Santiago, people drifted in and out of my life on a regular basis.  In the infancy of the journey, I had a hard time saying goodbye to friends.  The life lesson learned is that although relationships…

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As light as it is going to get

I started to organize my pack so that I could find what I wanted without digging through multiple stuff sacks to get the job done. I like to be able to sort things so that I know just what sack to reach for to get what I need. The photo to the right shows all that I will be bringing with me (see pack list). Everything goes into the 4 uberlight Granite Gear dry sacks, shown at the bottom of the photo, plus one stuff sack (non waterproof) for all my rain gear. I made one compromise to my original pack list and that was to replace the silk sleep sack with a Montbell down Thermal Sheet. It weighs 15 ounces (425 grams), and unzips so it lays flat. Later in the trip, when it is warmer, it will probably just get used as a sheet rather than a blanket or sleeping bag. The clear zip lock bags contain toiletries, first aid kit, daily foot care items (wool, tape, Nok cream), and a partial roll of toilet paper. I have kept clothing items to the minimum. I am carrying 2 Icebreaker short sleeve t shirts, 1 Icebreaker long sleeve (150 weight) 1/4 zip shirt for daily walking, and 1 long sleeve t shirt for the end of the day. I will wear merino wool runners tights under my rain pants for cold wet days, Patagonia Rock Craft hiking pants or Columbia Silver Ridge hiking shorts depending on the weather. Whatever I wear during the day I will wear the other at night. I can always wear the runners tights under my hiking shorts, at day’s end, if need be. My Montbell Versalite rain jacket will suffice for a windbreaker when necessary, same goes for the Versalite rain pants. I have included a Montbell Thermawrap synthetic insulated vest for chilly mornings or evenings, and a Montbell Plasma 1000 down jacket as a cold weather layering piece. I also have switched my outer socks to Icebreaker mid weight hiking socks as opposed to Smartwool that I think will be just a bit too warm for the expected hot weather. I will still use the Injinji toe socks as liners. Due to the expected mud on the Le Puy route Robin and I will both be using a very light weight gaiter made by Mountain Laurel Designs.This is what it all looks like when stowed away.Zpack Arc Blast 45 L backpackThe only thing I haven’t shown is the Golite Chrome Dome trekking umbrella. It will stow underneath the compression straps and sit in the side pouch shown in the pack photo above. All our documents, cash, iPad, camera, and guidebook will be carried in a waterproof chest pouch (shown propping up the pack, bottom left). Robin and I have opted not to use ponchos as rain gear and a pack cover for this trip as the back pack material is waterproof (and seam taped and), and everything inside will be in in dry sacks. The Cuben fiber back pack material does not absorb water so the straps and rigging will not pick up any additional water weight. In warmer wet weather we will break out the umbrellas and not put on the rain gear. Also I have the Zpack rain kilt that I can through on if I need something more than just the umbrella. I am actually looking forward to trying out some of these wet weather combinations to see what works best, under exertion, during periods of varying temperatures and wind strength. More on that later from the “chemin.”

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Lots of Green, and a Little Blue

From the garden out back you can see the landscape to the west, beyond the mimosa trees and the chicken hut and the wall that breaks the wind. I started installing the irrigation out there today, the water hoses that make veggies grow all summer. Nothing like putting in a water system to make the sky open up, except maybe washing a car. I never wash the car, but my neighbours do. They are why these fields out beyond the wall are bright lime green. They wash their cars, they spread fertilizer on the heavy clay ground, and they put seeds down at the same time. The combination works its April magic. All the way to Sahagun the ground is covered in a quilt, its patches made of every shade of green. And the sky, so clear and blue all day, week, and month, this afternoon as gray as gunmetal, but with the fields still in full sunlight in the foreground. There´s a rainbow out there somewhere, you just know it.  Paddy is painting a version on the patio wall. We are working outdoors in the long daylight hours, planting things, putting out the patio furniture, sunning ourselves and petting dog-heads. Bruno is open, so we see few pilgrims now. I contemplate Enough. That this little life, lived pretty much in this little corner of this little town, is enough for me. I am ambitious. I want more, I want to change things, make them better. I want to have friends I can meet for coffee and hang out with. I want to speak Spanish really well. I want to write more and better books. I want to be important and respected, but I also want to disappear, I want to be happy in my semi alone-ness. I want all the seeds I plant to germinate, and grow on, and produce beautiful fruit. I want people to come here and help us eat them, but I don´t want them to stay too long. Things do not work out. Maybe half the things I start ever come to anything. My favourite cousin on Dad´s side died three years ago, and now the favourite cousin on Mom´s side is having radiation treatments. People are sometimes friendly to me, but I do not make the next move to turn them into friends… most of them speak only Spanish, and Spanish is exhausting to me after a couple of hours. I will never get Spanish. I do have Malin. We went horse-riding on Saturday, to celebrate my birthday. I was involved in a minor collision, I hit the ground pretty hard. I am getting too old for riding, I think. I cannot afford to feel so beat-up, this many days later. It´s encouraging, though, to hear Malin and her English friends speaking Spanish. They´ve lived here a long time, too, and their Spanish is not so great, either. So things are somewhat sad-making, if I let them be. But then I pet a dog-head in the sunny patio, and I see the swallow dive through the barn-door. The swallows came back early this year, on my birthday. I spent Sunday at O´Cebreiro with Laurie, a woman I have admired for years. She is full of history and wisdom, her house is beautiful, she has a wonderful scruffy dog she bought from a beggar, she lives alone and she lives very well.  She gave me a great armload of hydrangea cuttings which I am planting in my patio, I do hope they will grow! I hope for half. Even half a hydrangea is pretty spectacular. Half a hydrangea, and a gun-metal sky behind a mimosa tree, and a dog-head that needs a scratch. That oughtta be enough for anybody.    

http://moratinoslife.blogspot.com/

How Did the Chicken Cross the Road?? – Day 39 – Melide to O Pino

  I’m so close to the end, it just doesn’t seem possible. My head and my heart feel so full of thoughts and ideas that I hardly know where to begin. The Camino is the perfect actualization of the idea of “Ask and you shall receive,” but not from God, from your fellow pilgrims. “Can … Continue reading →

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The Sunny Side

In my youth, the crystal ball predicted a life as an executive in corporate America, a trophy wife, several kids, a few spare homes, and memberships to expensive clubs.  Fortunately, the clairvoyant signal short circuited and gave me my existing life.  I am 50, childless,…

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