"But You Don't Look Sick"

I have been frustrated by the reduced feeling in my left hand lately and the tremor in my right. I have decided that there is nothing that alarming about either really but trying to type on a keyboard has become a bit of a chore. I am constantly missing keys and hitting the wrong keys, sometimes several at once. This requires constant revising of my text and slows me down. In the past two years I have had several MRIs of the brain and spinal cord, all with the purpose of looking for inflammation or lesions consistent with sarcoidosis. They have all been inconclusive. Several white matter lesions have been found but, I am told, these could be due to normal aging of the brain. The only definitive way to know if they are due to sarcoidosis is to biopsy a lesion but the risks involved in such a procedure far, far outweigh the benefits. After all, I am already being treated, so what would we do differently? So, for now, I have been described as having "peripheral neuropathy, probably due to sarcoidosis involvement". I choose to live with that, refusing any more interventions or scans or offers to do a spinal tap (ugh!). I think that if it ever becomes a major issue that needs more serious intervention then it will become obvious that we need to dig a little deeper.

One of the very, very frustrating aspects of this disease is how difficult it is to diagnose. The symptoms can mimic so many other things. During the early years of the disease process my doctors and I were able to use, among other things, a bloodtest that measures the presence of a certain enzyme, Angiotensin Converting Enzyme (ACE) in the blood to confirm disease activity. It was comforting to me to know that when I wasn't feeling well the bloodtest would reflect that. It helped me to know that it wasn't "all in my head" and I wasn't making it up or looking for attention or all the other things that you have to wrestle with when coping with a chronic disease. It was a nice objective marker. The normal value for such a test is between 7-67. My very first level that helped confirm my initial diagnosis was a whopping 280. Last year the ACE test became less and less reliable dropping down to less than 3 at one point despite some marked disease symptoms. Now it doesn't work for me anymore. Another one of those strange quirks of this disease. My doctor tells me that this tends to happen and noone really understands why. I feel lost without my little ACE crutch though, lost in that sea of always questioning oneself and wondering if my symptoms are real and valid. That can be a very tough place to be, especially when sarcoidosis patients do not always look sick.

I came across a moving video created by the Foundation for Sarcoidosis Research called "But You Don't Look Sick". By the way, that's something I've heard a lot!

15 Weeks to go: Up-a-day, down-a-day

Another Monday 3m run at a sorry 7:07k/h pace. I hate when I approach 7 minutes for a kilometre, never mind say go over. I know, "a bad run is a done run" but ... sigh, where was all the joy of Friday's pace?
I did not sleep well last night. It took awhile to fall asleep and I never settled into a sound snooze, every now and then some part of my brain insisted that I check the clock.  Despite this time-watching I got up late, although I had a good breakfast. I managed to burn the pine nuts, which I wanted to put into my prepared lunch salad, upsetting the cat and probably the neighbours with the fire alarm. Now the point of this is, of course, who toasts pine nuts at 7:00 in the morning on a work day? That is a far too ambitious project, I think, and indicative of bad judgment brought on by tiredness. My weekend was busy and festive, prompting me to consider its relationship to this morning's effort. I am a bit surprised that giving up the 'grog' is such a deal for me, but I love to settle down with friends and loved ones over a bottle of wine. It really loosens me out and marks off the weekend.  I am loath to make a definitive announcement here, but I know that I am on the verge of letting it go for the duration of the training period. Except my birthday and maybe Easter .. hmm, see, what I mean?
The morning was mild, although dull. The traffic was quiet because schools are on mid-term break, I still took a sneaky break at the traffic lights though, when I could easily and safely have skipped across.  And I confess, for the first time on this campaign, I walked a bit. It was up the little hill to Deer Park, but I just hadn't the pep.  I was glad at the end of my run, for more reasons than one, to see the campus Sports Centre.  An odd start to the running week, I wasn't cranky, was happy to be out, but the body was in another space!

One step and two ...

I really enjoyed Friday's long run. It was one of the easier weeks that Higdon builds into the eighteen-week programme and so I only  had to do six miles.  I just relaxed and sort of 'played' my way through it, allowing myself some long striding and a bit of speed from time to time. The end result was an average speed of 5:40k/h  which was good.  I enjoy those kind of speeds, but am not professional enough to guarantee that they can be produced at will on the day of the events.
Sometimes on my run, as you have read by now, I like to listen to music. The selection is usually a fairly random process.  Friday was no exception. Scanning through the list of albums on my player, I came across A Woman's Heart Ten Years On. Attracted by the variety of artists, songs and rhythms I decided to opt for this album. Both Black sisters are there (Frances and Mary), Sinéad O'Connor, Mary Coughlan, Maura O'Connell and even guest singer, Dolly Parton, as well as other well-established Irish artists. What is funny though, is the way in which I begin to change pace or step according to the rhythm of a particular song.  The chorus of one song in particular, Carrick-a-rede sung by Cathy Ryan, made me want to bounce a bit more than usual: 
"One Step and two hold tight, let go.
Twenty and four, hold tight, let go."
As the words of the chorus came home, I was sure the song was about a dance and I imagined a group of set dancers stepping in and out of a square formation, whirling and twirling in rhythm.  I was also reminded of my sister's latest post. Then, the next words came in,
"I'm nearly there, let go, let go"
and the song seemed to speak to me, the runner, as I faced into a straight stretch with my finish in view.  For a moment or two, the dance with Sarcoidosis, it's devilish hold, the hope it will 'let go' and my own training and striding were all apiece.
 "One step and two, hold tight, let go." 
Later in the car, I listened to the words more carefully and the song is clearly about a journey, a girl travelling to her lover. It took a bit of 'google research' to realise that the song is, in fact, about a girl fearfully crossing a rope bridge to a tiny island in the Northern part of Ireland where her fisherman boyfriend works.  Aware of the fragility of the structure between her and the crashing sea below, she is coaxing herself through her ordeal,  counting her steps and anticipating the joy of reunion. 
"We will tell our stories, love
And sing our songs out, every note.
One step and two, hold tight, let go."      

http://www.youtube.com/watch?v=N70lL35Ewsw

Dancing Around the Edges

I've been silent for a while: a trip to the doctor in Denver, farewell get-togethers, a myriad of getting-ready-to-move details and sick children home from school all have put pause to my online musings. I also celebrated my birthday. I just turned 39, a year closer to the infamous 40, but for me, my sights are set on 50.

Last year my doctor told me that she thought I was never really going to get rid of sarcoidosis (it was the first time anyone had dared to tell me that and I so appreciated her candor).In many cases sarcoidosis goes into remission by itself and with time but in my case it has been too persistent, too difficult to control and seems to have too tight of a hold on me. However, she tells me that if I can make it to 50 then I may see it becoming easier to control and more willing to loosen its grip a little, and perhaps I'll be able to pull back on some of the heavy-duty meds I'm on, all I suppose as hormones change and the immune system calms down a little, as occurs naturally with aging. So, my birthday ritual this year included a silent homage to the aging process and a respectful salute to the next 11 years! And I'm dreaming of a big birthday bash when I'm 50!

Last week my doctor confirmed some more sarcoid symptoms. She told me that I was "dancing on the edge of some major disease activity". She brought up that stress issue again. Oh my, now I am trying so hard not to stress about being stressed! With some reflection though I have come to the conclusion that moving house and across the country is a major life transition and I have decided to try to accept that of course I am going to feel stressed. I shall try to just keep moving through it knowing that all shall be well again in time. In the meantime I shall keep dancing on the edges, and while I'm at it I shall dance with grace and joy and loving the music...

It's the third-day run

I spotted the Aviva stadium this morning as I descended from Deer Park. I had never noticed it before and it took me a second or two to figure out the strange configuration. It always amazes me to see curves in a building or architectural structure. One of the advantages of Winter running, of course, is the dearth of foliage on the trees allowing glimpses into otherwise hidden spaces.  It was a beautiful morning, cold, bright and just perfect for a morning run.
Yes, I think it's the third-day run that catches me. It's still only (3m)5k, completed today at a pace of 6.16k/h, but into the third mile I noticed the build up in my legs of the dreaded lactic acid. Many of you non-runners will recognise this as the tightness you feel in muscles unaccustomed to exercise or after exercise for an extra-long period. It's the Jane Fonda 'burn'. 'Feel the burn', she used to say in her exercise videos as she lunged around in her tight-fitting leotard and California glow.  Today's run may also have been affected by the shorter rest period between runs. I ran in the afternoon yesterday, leaving me with twelve rather than the usual twenty-three hours of recovery.  Despite these slight twinges, I still like to do three days of consecutive runs. I see it as an exercise in building endurance necessary for completing a marathon. It's also my understanding, that one is supposed to run tired as well, as long as not overdoing it.
I was not as overall tired as last Wednesday. I am getting to bed and now to sleep earlier, which is a whole act of training and discipline in itself. 
It was such a glorious morning that I had a moment's temptation to abandon work and just hang outdoors all day. Another Walter Mitty moment.

Making up the miles

Keen to prioritise a work project and working from home, I left my run 'til later in the afternoon. I feared it was going to be a disaster weatherwise as the dark clouds, rain and cold wind rolled in during the mid-morning. As luck would have it, I managed to dodge the worst of the showers and wind. 
I dislike today's route, but did not want to lose time travelling. The route is too short and difficult to extend. I end up circling round housing estates, doubling up sections of the route and so on. It's a bit of guess work and I am totally dependent on the app on my phone to keep the distance in check. The experience, as a consequence, becomes a bit like watching a kettle boil! I managed to do over 5miles at a pace of 6:18k/h which isn't bad considering I stopped to tie a shoelace, had to pause occasionally to cross roads and so on.  That said, today's run was meant to be done at 'pace' which would suggest that the difference should be more than ten seconds faster than yesterday's easy-run pace.  Not to worry, I had occasion to smile as I recalled my earlier attempts at this route. In its simplest form it is barely 4km and, in my initial forays into training, I would be delighted if I could run it all.  Now it's too short!  By the way, running it twice (which probably seems like the most logical thing to do) is not particularly satisfactory as it takes you through the town with pedestrians, junctions and other obstacles. Hence, the need to extend within sections of it.
To return to the quest to raise funds for the Irish Lung Foundation. I want to announce that customprint.ie (a friend of Etty's owns the company) is in the process of preparing active-run t-shirts for wearing during my training and for marathon day. I will post photos as soon as I have them, but I want to thank customprint for their generous donation to the cause. Wearing the t-shirts as I run around the suburbs of Dublin in early morning traffic means that I will also be raising awareness of the disease and charity. I am also grateful for offers of support on the day of the marathon, but that still feels like a long way away.  

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!