Dagmar Slaven updated 04-04-14
See Dagmar’s website here http://www.myomusings.com/
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 20th 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 unwinnable, 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 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 learnedthat 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. Two years ago, 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.
I posted this on the TMA IBM section and wanted to share it here:Huge changes from one day to the next!
Posted by DAGMAR SLAVEN on April 2, 2014 at 9:57am in IBM DiscussionView Discussions
I do not find it easy to post about this but I do owe it to everyone here.
During the past year I kept on doing what was still possible but knowing that with each time I was transferring to and from wheel chair to toilet, stairlift or bed, my maneuvers were extremely dangerous for me and I did risk the chance of taking a fall and break something. I was very much aware that any mishap and losing the function of only one of my limbs would render me instantly totally dependent for everything.
I chose to block it out and continued on as I was until last Tuesday, when due to the ongoing and relentless muscle loss I was no longer able to get up from the toilet. I had to call my husband from my cell phone (he had gone out for a bit but was in the neighbourhood and was home within 10 minutes) With the help of a gaitbelt that I had bought some time ago he was able to hoist me back up and into my wheel chair.
From this moment on I could no longer depend on any of the maneuvers I had used for a long time, stubbornly, to do what I still wanted and could do albeit dangerously. Now my weakened body finally will no longer cooperate and simply said it had had enough!
Needless to say I am devastated by this latest loss, but have to remember I have been fighting this uninvited and unwelcome guest who has stayed with me for the last 25 years and I have been trying very hard not to let this guest rob me of my soul.
This crisis meant VNA services, establishing the need for a hospital bed, a lift device and a rolling shower commode chair. None of this can happen over night and we are in limbo state as to how soon it may happen. It will also require our looking for a PCA (personal care attendant) to give Bill a break, who to make things worse, has had knee problems and on that fateful day just had had a cortisone shot.
To be prepared for that fateful day I have had an Easy Pivot Lift from the MDA loan closet plus a commode that have graced our living room with their presence since last year, so in a way I was not totally ubprepared for this day finally to catch up with me and my body. I am so very grateful to have been at least proactive in that respect but my stubborn nature wanted to eke out more time and I eked out a little more than a year from our bathroom renovation last January to this year’s March.
My present problem is the use of the lifter which is rather outdated (came with a VHS tape for instruction) cannot be adjusted to my body dimensions and leaves me with bruises on my chest and arms. However I am grateful that I had it available in our home instantly. The other problem is our 2 story home which will require the need for us to have a second set of devices for both levels, since the roll in shower is upstairs. Having to use diapers full time now, there is no place downstairs to clean me up if I soil myself. Bill is my angel and rock but it hurts him and our children terribly to see me in this state. We do pray a lot and try to take one day at a time. I certainly would appreciate your support and prayers for me and my family. I AM devastated but do also count my blessings for everything in my life that has been available to me to help myself over these years of losses, grief and yes, acceptance of IBM, it is what it is, but I refuse to let it rob my soul.
Your sad and overwhelmed friend Dagmar