Gift

I am just in, having barely, barely made it out the door. My run was squeezed between other preoccupations, just ordinary work, living preoccupations. I ran the local route, twice; it is serving me well in these busy, fumbling along, living-in-my-head days.

I am just in, glowing, invigorated, blood flowing, less uptight and wanting to pay homage to some deity or other for discovering the joy of running. 

This evening, it feels like gift. If I could share it, I would. 

Musing on the Side Lines

It's Spring Break for the three kiddos this week. Unfortunately Hubby has to work as he didn't quite feel like he could take a week off only 5 weeks into his new job! The Kiddos have been hopping and bouncing like Easter Bunnies, full of expectation and anticipation for the week ahead, hard to blame them really, after all there's a new city to explore.

When you have a mixed gender family of a 12 year old, a 10 year old and a five year old, there is always a grumble or two or three when trying to decide on an activity that will engage and excite everyone. It's nigh impossible actually to come to a consensus so my suggestion that we go watch the Boston Marathon on Monday met with various degrees of excitement, mostly on the cool side. MaeMae was the most enthusiastic, runner-aspirer as she is. "Why would I want to see a bunch of people running down the street?" asked Scootch, living up in attitude to the pimply nose that betrays his impending teenagerhood. "What is it Mom, is it people running in a parade?" asked Little Guy. Various clucking and soothing and I'll admit it, bribing, finally got everyone in the car and off we went, anxious to get an early start, anxious about traffic and parking, anxious whether it would all work out and everyone would be happy, although, the anxiety was all mine!

When the first participants whizzed by the eyes nearly popped out of the heads of my three Kiddos. The first participants in the race are of course those competing in their variously rigged and impressively fast wheelchairs, that only faintly resemble traditional wheelchairs, arms propelling them down the course. MaeMae looked at me in complete disbelief "How do they do that Mom?" she asked, "It's impossible, I mean it's...it's... 26.2 miles....!" And from that moment on my three Kiddos were completely hooked. After the first wave of participants the women's race came by. Our viewing point was fantastic and about 11 miles in to the course, enough time to allow the group to break up a little and for the race leaders to come to the front. We were not disappointed as we saw Desiree Davila running down the course, her white skin in sharp contrast to the dark skin of Caroline Kilel, Sharon Cherop and their Kenyan companions. It was a wonderful and powerful sight. The Kiddos marvelled at the bare, tight, taut abdominal muscles working hard before our very eyes. The ladies looked relaxed and many smiled in response to the cheering crowds.

Thirty minutes or so later the first wave of the men's race came through and we were greeted by US participant Ryan Haul, in front at that point, but close on his heels, the Kenyan men's contingent. Haul ran seemingly effortlessly, passing mere feet from us, again smiling and wooing the crowd and the crowd loved him right back. As runner after runner ran down the field the Kiddos took pride in cheering each one. Soon hands were red and sore from clapping so much, they would take a break briefly and then be drawn back in to it all again. We started to notice those that wore their names on their shirts and had fun calling out to them by name "You go Dan, you're looking good!" "Ted, you're awesome!" "You can do it Mark!" Encouraged by the runner's nods and smiles and occasional words of thanks the kiddos persisted, pouring all their strength, admiration and awe into encouraging these marvellous athletes. Soon they were out at the edge of the course high-fiving runners as they ran by. They quickly spotted those runners that wanted to be high-fived and those that didn't. They loved holding their palms up to me to show how wet their hands were from the contact with bodies that were working so hard. In some way, I think they loved touching greatness.

Soon I found myself sitting back quietly, just watching. I would never find myself among these runners, never manage even a half mile of running. In recent months I find my breathing to be more labored and tight yet, my heart was full of gratitude for all sorts of things, some things I could hardly find words for, gratitude just bubbled up inside me. Occasionally I found tears in my eyes; like when I saw a shirt that read "This one's for you Dad!" or "Team Timmy", another read "I'm running for my sister" or "Cancer Survivor" or "I'm 41 today!". There were so many stories out there, thousands of them, indeed 27,000 of them, flying by me. The marathon itself was really only an outward representation of so many other marathons that have been run in and around these participant's lives, touching them, shaping them, moulding them. I was in awe of the love, willpower and dedication to the process that brought each person to this point, to this moment in time. I was grateful to each person out there, regardless of age or fitness level, whether they had two legs, one leg or no legs, that was bearing witness to my three children, illustrating the power of the human spirit, the power of determination, dedication and strength of character, the power of having a dream and chasing it, for 26.2 miles, all the way to the finish line.

A tiny clip of the first rush of ladies with Desiree Davila in the middle of the Kenyan contingent


Ryan Haul leads as he races past us

16 Weeks to Go

A chilly morning! All layers were back on again this morning, although I didn't have a hat or gloves, for a 4 degree (C), damp start to the day.  It was a short easy run (3 miles) done at a 6.28k/h pace which is my average training pace, it seems.  I felt slower.  Mind you, I had an insight this morning about my breakfast. The speedy version - muesli with milk and a mug of coffee - is not a good pre-run combination.  It brings on indigestion. I apologise to fellow pedestrians or runners disturbed by my 'burps' or 'belches' as I pounded the pavement this morning.  Tomorrow it will be back to porridge and pre-poached pears, a combination that does not seem to bother me at all.
Now that we are settled into our marathon and blog campaign, it is a good time to 'officially' name our chosen charity. I am running on behalf of the Irish Lung Foundation who work throughout Ireland to fund support groups and research, and to provide information to patients suffering from a variety of lung diseases.  The Irish Sarcoidosis Support Network is supported by the Irish Lung Foundation.  I will now put up a link to the Irish Lung Foundation who are currently in the process of setting up a mycharity.ie account through which people can pledge their donations. As soon as that is organised, I will put up that link.  By the way, I have already received my first cash donation for which I am grateful!
Tomorrow I will update you on another kind donation made to the campaign. In the meantime, don't forget to share the love!

Long run with some differences

I managed the second long run yesterday, choosing the canal and the afternoon rather than suburbs and morning.  I do not have a definitive account of pace or even distance because the GPS-based app on my phone, which I use to measure these things, closed unexpectedly.  I am pretty sure that I did the best part of ten miles - five miles out and five miles in. There were a number of other differences to yesterday's run. I chose to leave off the thermal top I wear under my t-shirt and felt more comfortable; over distance one gets quite warm.  I also consumed one of those energy gel packs about half-way through my run. While preparing for my last half-marathon I learned that consuming glucose, about 40 minutes into any run that is longer than an hour, will enhance endurance. It does! I don't like energy drinks, preferring plain water to keep hydrated.  However, I do find that the injection of sugar (glucose sweets, gel pack or whatever) does help. Apparently, we begin to burn fat at some stage in our long runs, to do that efficently our system needs some glucose or carbohydrate too.  Whatever the science, I find it does help; I do not feel so depleted by the end of the run. The gel is disgusting though. It was like 7up in the form of toothpaste. Not good! It was also expensive at €2 for one little pack. Jelly sweets will do until the distance really increases.  One final difference to yesterday's run was the ground. It began with a soft tarmacadam surface and then became a mud path. This, of course, was easier on the limbs but required concentration so as not to fall and was a bit cold and wet.  After the first two or three splashes up my legs, I took little notice, but the white runners are no longer white! That's the end of this week's running which reached the grand total of 20 miles. Last weekend, I managed a cross-training stint of 2 hours with a walk, but that's unlikely this weekend. We're off down South to celebrate today the generation coming after us and, tomorrow, to remember the generation that went before us. Have a good weekend!

Day 4

Another early run around the suburbs, and the day is off to a good start. Today was also a shorter run at 5k approximately.  I am glad that I invested in new shoes, pink and shiny white as they are, and I really relished the extra bounce and support. My achilles are still slightly stiff, but not as much as on Tuesday. Rhetorician, you tell me that is just a symptom of old age? I try to remember to shorten my strides and over the weekend I will use some ice and heat packs too.  They're not bad today, helped greatly by my demanding Yoga teacher on Tuesday evening and few Downward Dogs!  This morning,  as I strolled back to the car to pick up my gear and head to the shower, I could hear Nina Simone singing in my head "It's a new dawn, it's a new day, it's a new life and I'm feeling good."( I apologise for the cross-posting with Facebook.)  Early morning running is quite exhilarating, although it requires a bit of organisation.
I thought that I might explain briefly to those that don't know us very well, that my sister lives in Arizona, although she and her family are currently packing up to move East. I live in Co. Kildare and work in South Dublin. Any fundraising from the marathon and the blog will go to Irish charities (more on that when it is fully operational).  We are both heartened by the support and interest, although we are both a bit squeamish, I think, about putting ourselves out there. I can so understand Etty's dilemma (see below), but I think that Rhetorician has reassured you (Etty) that all you can do is tell it as it is.  It is fair to say that your Sarcoidosis has not taken up all (even much) of our conversation over the years, that you have a good handle on it and rarely have I seen you overwhelmed by it.  Writing at this time is also fortuitous because it offers you an opportunity to filter your health issues through the lens of an exciting time, if you have the time to write at all. 
My anxiety lies in the possible insensitivity of writing about glowing energy and endorphin rushes, knowing that you might be feeling less than well.  Mind you, as the runs begin to lengthen I suspect you will find me a much quieter girl! I'm already anxious about tomorrow's longer run - 8 miles. And no, I'm not doing it early in the morning.

My Story

I was diagnosed with sarcoidosis in 2003, a chronic inflammatory condition that primarily involves the lungs, although I probably had had it for a few years prior to that. Unusually, my initial symptoms involved my kidneys. For reasons that no one at the time could figure out, I kept forming massive and very painful kidney stones and had required multiple shockwave treatments to break the stones up so I could pass them. Since 2002 I have had no less than 12 such treatments, each one involving anesthesia and a day in the hospital. In the spring of 2003 I was experiencing night sweats, an annoying dry cough, wheezing and was pretty tired all the time. I also had some swollen lymph nodes in my neck. Truthfully I didn’t pay too much attention to these symptoms, I was pregnant and expecting my third baby, you don’t always feel your best when you’re pregnant! When the baby miscarried I found myself at the doctor’s office. He drew some blood, gave me a complete physical exam, ordered some x-rays and then told me that he thought I was very sick, so sick in fact that he told me to prepare myself for the news that I had cancer, probably lymphoma. My lasting memory of that time was driving home from the doctor’s office, alone, grieving the loss of our baby and wondering to myself, how in the world am I going to tell this to my husband?

Eight years later, I now know that it wasn’t cancer I had but sarcoidosis. When I initially received that diagnosis, those in the medical profession were almost congratulating me that I didn’t have the dreaded “C” word. The common belief was “you’ll be fine. It goes away by itself in a year or two, three at the most. About six months of treatment and you’ll be fine!” This turned out of course to be not true. Eight years later my treatment requires me to receive a medicine through an IV in the hospital every 4-6 weeks. Chronic inflammation in my lungs has caused permanent lung scarring, created a cavity in my lung, and caused my airways to become floppy and lose their elasticity. Any respiratory infection I get is cause for concern. I have experienced sarcoidosis on my skin, in my lymph nodes, spleen, sinuses, kidneys and lungs. I have developed a tingling sensation in my left arm, fingers and toes and left side of my face suggesting nerve involvement and arrhythmias suggesting heart involvement. To receive adequate health care I fly over 900 miles every three months to see a sarcoidosis specialist in Denver, Colorado.

I am a musician and I love to sing, it’s my passion and my job, but sometimes I simply cannot, there’s not enough breath. Sometimes when I sing long phrases it induces coughing fits where my lungs go into spasms. I have had to quit my job teaching movement and song to toddlers and pre-schoolers as it was becoming too hard to sing and move around the classroom with these active little folk. When I play outside with my children I have to stop frequently to rest, catch my breath or cough! When my daughter was five she asked me if the doctors could make me well enough to be able to play tag with her, this was what she wished for. Despite some pretty serious medication, the sarcoid remains active, refusing to go into remission, although I do feel better than I have in a long time and my quality of life has improved. During active disease spells I will need to go to bed in the afternoon so I have enough energy to get through the day. I will run daily low grade fevers and feel achy and “flu-ish” all over.

Sarcoidosis is a poorly understood disease. There is no consensus among medical professionals as to what causes the disease, therefore there is no way to cure it. The most common way to manage the disease is by trying to reduce inflammation and suppressing the immune system. This brings its own complications. Sarcoidosis does not rank high on the list of diseases that receive a lot of funding for research nor a lot of attention from the general public. Many people are unaware of how debilitating a disease it can be, how it can rob you of the prime of your life afflicting as it does mostly those between the ages of 30 and 50. Similar to other chronic diseases, someone with sarcoidosis doesn’t always look sick so those around them may not be sensitive to their needs and may place unfair expectations on them. It is not uncommon for a sarcoidosis patient to suffer from depression, often due to a lack of support and understanding and the constant battle to keep going. Sarcoidosis patients frequently have limited sources of energy to get them through the day.

When I first flew to Denver in 2007 to meet my current doctor she said to me tongue in cheek after reviewing my lung x-rays, “Well, you’ll probably never run a marathon but I think we can definitely improve your quality of life…” and she did, and no, I cannot run much at all really! But in June 2011, my sister will run that marathon for me!