Day 5/6 First Long Run

The dreaded long run is done. It was 8 miles (12.9K) in a strong wind for about an hour and twenty minutes. 
This may sound odd to some of you, but I had actually forgotten that the long runs have become one of my favourite parts of training. I was anxious because I have not been on anything longer than 5K since December and there was a slight fear that I wouldn't like it or be able to do it anymore.  But no, I just had to settle into it. The long runs are different, you have to give over your time and be in it. I don't know if that makes sense to anyone, but it's not like the shorter runs which you fit in between other aspects of your life. For the long run, you kick off and you  realise this is it for the next hour or more.  You have to keep slow and steady, you can't charge through it to get the next event of the day because if you go too fast, you won't finish. 
Yesterday's run was complicated by a fairly gusty wind. As soon as I stepped out of the car, I knew I had made a mistake because the wind was going to be at my back for the outward leg of my journey making the return, when I am tired, more arduous.  I should have found parking at the other side of my circuit.  By the last mile I was reminded of cycling home from school long 'go. We lived on the Western side of town on a straight stretch of road, which was beautiful in October because of the gorgeous Autumn sunsets and the changing colour of the trees, but windy days were a different matter. Southwesterlies are the prevailing winds in that part of the world and, at the end of the day, bags on the back of the bike, the last thing you wanted was to cycle against the wind. It brings on the grumble. At a recent yoga conference, the teacher would advise us to get out of the 'grumble zone' and I knew exactly what she meant, although I associate it more with running than yoga, those days when you really are going against yourself, not digging deep enough to overcome the resistance, know that the power is in you, but you just couldn't be bothered going in after it.  On the grumble days, you just go through the motions, but with bad grace and all you can say is 'Well, I got through it'.  I have not yet hit the grumble zone in this training programme, but it is only week one. It will come.  I enjoyed yesterday's run, managing to get lost in a housing estate, spotting a shop that keeps running food (high energy gels and so on) that I will revisit and a ruined castle that I had not known was there.  I did not see anything as picturesque as horses in the Park, Rhetorician! Reminded by Rhetorician's post on Thursday, I took out my heart monitor and used it to slow myself down because this is about endurance (on both sides of the Atlantic, perhaps), not speed.
So many thoughts as I was running, but I was thinking of you Etty because I know that you are not feeling so good this week. At times like that, I wish I was nearer, even only to sit down awhile over a cup of tea. I'm old enough to know you can't take burdens from people, but sometimes you can just pause awhile and share.  Maybe, that's what this particular project is all about ...  

Homework in the Laundry Basket

We're moving and we're thrilled about it, apprehensive, a little scared, overwhelmed at times, but all in all this is a dream come true for us. Having been born and raised in a little seaside town in Ireland, lately the mountains of Arizona have been feeling like they are a long way from home. Living life on the east coast of the United States seems a much more practical idea and frankly, while my hubby and I have enjoyed our 10 year southwest adventure, we feel more at home in the northeast.

One of the big tasks before us is of course to sell our home, no easy feat in this housing market and particularly not in Arizona, one of the states hit hardest by the housing bubble. Our cozy home on the edge of the forest has been on the market now for about three weeks. The week before listing it I scrubbed and cleaned and dusted and mopped until it was shining like a new pin, all in great anticipation of the hordes of people that would be lining up to come and see, waving big fat checks in their hands of course, falling over each other to be the first to lay claim to this amazing piece of property! There was all of one showing that first week and none the next, and none the next and so on... In my usual way of playing games with myself to keep my spirits up I reasoned that the lack of activity on the house was really a blessing in disguise because I didn't have to go through all that stress of keeping a house with three kids and one very large dog looking like the cover of a magazine. After all we had our hands full; negotiating a price on a new home back east, registering the kiddos at a new school, measuring for and ordering school uniforms, researching new doctors, clearing out closets...the list is endless.

Monday morning I dropped my little guy to school, checked in with his teachers and took my usual Monday morning walk though the meadow with my friend and our two dogs. It was a wonderful walk, we talked about spirituality and the state of the church and education and technology's impact on our kids and what it's like to live in Arizona these days, a lot of our favourite topics actually! The conversation was so engaging that we mutually decided to do another round on the trail. Then I took myself and my very wet and tired out, oversized dog back home. At home I was faced with the usual, breakfast dishes still on the table, dishes needing to be unloaded from the dishwasher, a various assortment of clothing items scattered nonchalantly across the living room floor, a laundry basket groaning to be unburdened, dog hair everywhere. But I was on fire from my stimulating conversation and decided to jump right in to planning my lessons for the next day's classes. On Tuesdays I teach music to prescholers and elementary school students. The elementary students are starting a study on South America soon and I have been teaching them songs relevant to that continent. I wanted to continue to flesh out my lesson plan and find some south American folk music for them to listen to, I even had plans to teach them a circle dance to a Peruvian tune. All of this required planning, creativity and time and I set to it.

Several hours later the phone rang. It was the realtor, "I have a couple that want to see your house within the hour. Can you do this?" Not wanting to pass up what could be a great opportunity I hastily mumbled "Um, I'll do my best" "Great, I'll tell them no earlier than 2pm" "Okay" I said not realizing that it was 1:25pm. Oh dear! The dishes, the beds, the clothes, the toys, the laundry, the dog, the dog hair, the dog slobber on the windows.... There were several moments of sheer panic. What to do???? Then I went in to wonder-woman mode. I grabbed my biggest laundry basket, full of course of dirty clothes and shoved the offending clothes in the dryer, who cares if they were dirty. I then swept through the house with the laundry basket scooping up everything that didn't have a home into it. Yesterdays mail, kiddies homework, bills waiting to be paid, a thermometer, bottles of medicine, a phone charger, a math game, a hot water bottle cap, notes from school, the little guy's latest colouring endeavours and crayons, toys, clothes, shoes, gloves, everything rudely hanging out on the floor that didn't belong there. Then there were the dirty dishes...the dishwasher was full of clean ones so what to do? I shoved them in the fridge hoping nobody would be inspired to take a peek at its contents. Wiping down countertops I planned my next move, the vacuum cleaner. Grabbing it I said a quick prayer that the bag wouldn't need emptying. The phone rang, it was hubby, "I just heard you have people coming over, are you okay?" "Yeah" I said breathlessly, ('cause vacuuming always seems to turn in to an aerobic activity for me), the vacuum still roaring in one hand, phone in the other, "Gotta go!". It was 2pm, time to vacate the house. I closed the door behind me, said another silent prayer, hoisted the burgeoning laundry basket in the back of the car along with the oversized dog and went off to do my usual Monday afternoon shuttling of kiddos between school and piano lessons.

I returned home in eager anticipation at 3:45, but there were no fresh footprints in the snow, no new tire tracks to tell me if there had been two vehicles or one. Confused I unlocked the door, no calling card from the realtor to say they had been here. As I looked around surveying my beautiful home aware of the dirty secrets it held behind closed doors, the phone rang again, it was the realtor. "I'm so sorry, they just told me they have been delayed until 4:15. Is this okay?" "Of course" I said, for what else could one say?

For another 30 minutes I fussed and prepped and mopped and remembered to clean the dog slobber off the windows that I never got to earlier and left again, this time, to hide surreptiously down the adjoining cul de sac in perfect line of vision of any potential visitors. I saw them. I timed them. Eight minutes it took.... The realtor called again "They're out now" (I already knew that of course)."It was so quick" I said. "Well, they said they liked it. I'll keep you posted". I returned home again, hubby came in right behind me with the kiddos. I didn't feel good, my body was hurting, the first place that starts to hurt is usually the cavity area on the upper left side of my back and then my legs. The thermometer that I dug back out of the laundry basket that was in the back of the car read 100.7, not an official fever, but enough to make you feel blah. "Just climb in to bed my love. I can take it from here" he said. He knows!

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.

A Dilemma

So, I have to admit that this project is my first venture into the blogosphere. I don't even read (or is the word "follow"?)that many blogs. Niamh's desire to raise awareness of those living with chronic illnesses and for sarcoidosis in particular though has inspired me to step outside of my safe zone and share my story.

I find myself presented with a great dilemma in the midst of this. Over the years of living with a chronic or ongoing disease I have worked hard on developing an attitude of positivity and trying to see the best in everything, and although not always successful at it, it has helped me tremendously! After all, one figures out pretty quickly that most people don't really want to hear about your aches and pains, it makes them uncomfortable, they don't know what to say, they don't understand sarcoidosis, it's pretty much a conversation stopper actually! And I understand that, I really, really do. More importantly though I also have come to realize that everyone carries their share of sadness, pain, loss, call it whatever you will. A lovely friend of mine has a quote from Plato posted on her refrigerator for her family to see "Be kind, for everyone you meet is fighting a hard battle". The older I get the more I realize and appreciate just how true this is...and I hear that call for compassion, that call to go deeper in relationship, the call to listen not just with my ears but with my heart, to try to walk in another's shoes, to not judge....

My fear in blogging about my experiences with illness is that I will present myself as if my life is terrible, because truthfully, my life isn't terrible, it's quite wonderful actually! There have been hard times, of course, but my life is rich and full and with the shadows have come lots of light. So that is my dilemma. I want to represent sarcoidosis and chronic illnesses but I am very unused to sharing the details so publicly. So bear with me as I figure this out and in the meantime "Be kind, as everyone you meet is fighting a hard battle".

Day 2

Yesterday should have been a 5km run, but time and place were against me. I managed one circuit of our local Slí na Sláinte (a mere 3.38km), noted my very stiff achilles and ankle and resolved it was time to invest in a new pair of shoes. I did the 'gait test' for the first time to discover that I am 'nearly neutral' ... which makes me feel good, almost as if I had passed an exam or something. It's all to do with the ankles, and hard to believe when you see the swing of my left leg ... apparently, you can't get runners to correct wobbly knees! I bought a pair of ASICS KAYANO less €35 in the sale - yay! Today is a rest day, so they will get their very first outing tomorrow ... yay again! By the way, they've got pink trimming. Very girlie!

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!

18 weeks to go

For a while now, I've wanted to run a marathon. In fact, ever since I skipped alongside my brother Killian, who was struggling (succesfully, of course) to conquer mile 18 at the Clonskeagh mosque, in the Dublin City marathon. (Not sure of the year) I've never been a runner ... until recently that is. I completed a 5km in Rathfarnham in 2005 and promptly gave up running. In the Summer of 2009, motivated by the need to 'trim up' and get healthy again, I began a walk-run regime. By December 2010, not only had I run another Rathfarnham 5km, but I had also completed 3 half-marathons including the inaugural Waterfront event in my home town of Clonakilty. I love running .... most of the time. Up to now, I have never fundraised. Somewhere, in the back of my head, the question of the marathon hovered and I was storing up my fundraising for that event. The time has come. On June 6th, I hope to run the Cork city marathon to raise funds for those suffering from chronic lung illnesses, specifically Sarcoidosis.  The reason why - my sister.  I will let her tell her story.