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...

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".