NATIONAL MYOSITIS AWARENESS DAY, Sept. 21, 2013

September 21, is nationally recognized as Myositis Awareness Day and in order to raise funds and greater awareness about this still too little known and  rare disease I have listed a walk in Pond Meadow Park in Braintree for that event on that day.

I had written the following article some time ago. Perhaps reading about my journey with Myositis will peek your interest and you will join us on September 21 for "Dagmar's Walk in the Park 2013"

EMBRACING MYOSITIS (IBM)

It was in 1989 that I had my first encounter with an uninvited guest by the name of Myositis. As it is with most folks when you get the diagnosis of a rare muscle wasting disease, besides the initial shock, I was clueless as to what this would mean for me and my loved ones in the years to come. It did take some time, but slowly I learned to look at this uninvited guest not necessarily as my enemy but as a deceitful friend who on the one hand is constantly chipping away at my life with changes I could not have imagined, but on the other hand who has opened my eyes to perspectives of my life and on life in general that I would not have been open to before the diagnosis. Any growth is accompanied by pain and perhaps growing pains is a good description of my journey with Myositis.

 Anyone that suffers from a rare neuromuscular disease will be able to identify with:  You have what??  My diagnosis of Inclusion Body Myositis is perhaps easier to pronounce than many of the other rare diseases that fall under the big umbrella of muscle wasting diseases that the Muscular Dystrophy Association of America has supported over the years.  Myositis, or inflammatory myopathy, as it is sometimes called, has the dubious distinction of being an orphan disease. This means that most folks, including some medical professionals, have never heard of it and probably will never meet anyone with this diagnosis. For the patient this all too often means years of either being told that the problem is all in your head or being misdiagnosed. It does help to know that there are three main forms of myositis: Dermatomyositis, Polymyositis and Inclusion Body Myositis and they all have distinctive features and different approaches to treatment. What they do have in common is muscle wasting. In Inclusion Body Myositis this is a rather slow progression but it is a relentless process. Over the years it will lead to total disability and dependence on others for your care.

 I had to learn about Myositis the hard way, by being diagnosed and treated for Polymyositis for 9 years with the usual Prednisone and Methotrexate. Yet with each passing year I was feeling a little weaker. I desperately wanted answers and after some prodding, switching doctors and a second biopsy it was determined that in fact I had Inclusion Body Myositis. Sadly this misdiagnosis of Polymyositis versus Inclusion Body Myositis still happens a lot. IBM as it is called for short, is known to not be responsive to the drugs I was given. As matter of fact, there is no known treatment at this point for IBM that has lead to a remission let alone a cure. I was on these drugs for too many years when I did not have to be!

 This year marks the 24th year of my having to come to terms with Myositis and in particular with IBM. In some ways I have grown in ways I never thought I would have to. I am watching others in their prime doing all the things I used to be able to do and never thought twice about, and now these things are beyond my reach. I recently read about a new movement called the ‘slow movement’ that supposedly is gaining a following. It is about folks feeling caught in the rat race who make a conscious decision to slow down their lives, to stop the hurrying, to breathe, observe, enjoy, relax and listen.  I think I joined this ‘new’ movement years ago.  IBM has forced me to slow down, to let go, to find out what is really important -  to grieve when there is yet another loss to be acknowledged and then muster the will to go on despite the circumstances. I learned to celebrate the small victories that may be noticeable only to me and I learned to refuse to see myself as a victim.

 In a way I see myself as fighting a war here, my very own personal war. A war - seemingly not winnable, at least on medical terms. But in the end, are we not all mortals? What really matters here is not if we win this battle but how we fight it. In this department we all do have a say. Is it my choice to be angry and bitter? (Believe me I have been there, too)  To have myositis was not a choice I made, but how I deal with it is my choice. My choice of remaining positive against all odds is often the more difficult one to make. Our first instinct when we encounter something bad in our lives is to fall into a negative state and Wallow In Self Pity. I did have my share of ‘WISP’days, I will admit to that freely. When I learned and accepted that it is useless and counterproductive to rail against the things I cannot change, I also learned to invite love and light into my life. I learned that listening to a fugue by J.S. Bach helps me to sort out my mind. Good music and uplifting literature are food for our souls.  It is important to read uplifting stories and poetry versus the daily papers with more than their share of negative news. And I want to remember to laugh and find humor whenever possible every single day. It did not happen overnight but over time I became proactive - I joined support groups e..g. The Myositis Association (TMA) in Virginia)and decided to learn as much as possible about Myositis.

 Yes, Myositis has changed my life. It is an uninvited guest that clings to me but also has given me the opportunity to learn and grow. It taught me to pace myself, to prioritize, to respect and nurture my body. It taught me to spend my time with those whose presence I find uplifting and healing. It taught me to ask for help and to accept the generosity of family and friends. It taught me that it is a daily choice to be happy despite the circumstances I find myself in and to make the most of each day. I learned that it costs much less energy to smile than to become bitter -  I have chosen to embrace Myositis, my deceitful friend whom I have to live with everyday and who keeps on stealing from me. On the other hand, Myositis has opened my life to so many other perspectives. In 2007, with the help of my son, I started a web page about my journey with Myositis. It has been a tool for me to come to terms with my disease and by sharing it on the internet perhaps I have given other Myositis patients a mirror to see themselves in my story.

If you are curious -  to read more about - me and my journey with Myositis go to www.myomusings.com  or contact me at daxslaven@comcast.net