If you or someone you know has been diagnosed with Myositis, please don't panic.  Becoming sick is scary and very stressful. Though the Myositis diseases have no real "cure",  there are MANY people who do improve, usually through the use of several medications and treatments and live a long, happy and fulfilled life.  One thing I have learned, from talking to and meeting others with Myositis, is that every case is somewhat different.  It is very important to get diagnosed as soon as possible and start treatment, so as to get and keep your disease under control.  Find a good and preferably experienced doctor, such as a Rheumatologist, Neurologist or Dermatologist.  Keep looking until you find one you like and trust and one that is willing to listen and isn't demeaning.  Becoming your own advocate for your health care is important and will help bring back a feeling of control over your life.  Be sure to get yourself educated about your condition and use the many resources out there. Don't be afraid to ask questions of your doctor and other medical professionals and take notes if needed. You will soon become more knowledgeable about your disease than most doctors. 

I also caution you that if you read any of the Myositis support Bulletin Boards (BB), these can be a wealth of information, but they can also be very disturbing and scary.  Some of the people on those sites may be having a difficult time with their disease and some log on to just to visit and talk or to find out more information.  These boards can be very helpful but remember that there are people out there with Myositis that are doing well or have gone into some type of remission and they don't visit the BB very often, if at all.    

Today there are many wonderful new safer drugs, treatments, information and support about Myositis, that were not available to me when I first got sick.  My case was quite severe at first and it has always been hard to treat.  I don't think I am typical of most with DM or PM and I also believe that those cases caught early that are aggressively treated with some of the newer medications end up better off than I.

You MUST try to live a healthy lifestyle.  Exercise and stretch, eat a good diet, limit your sugars, drink lots of pure water, use vitamin & herb supplementation, get lots of rest, (8-10 hours of sleep daily & nap if you need to) and do relaxation techniques. Stress creates inflammation.  Many, as I have, do well by adding alternative medicine to their regime. I have found that reducing my stress level, eating better and detoxify my digestive & elimination organs has really helped the state of my current health. 

Support & Positive Thinking: It is so important to have good, supportive people surrounding you and do try to develop more than one support network so as to not overwhelm just a few people in your life. Often your "support" people are spouses, relatives or close friends and they are probably going through a lot of the same emotions as you are. They most likely are worried about you and scared of the unknown. They may at times feel responsible for holding" all your lives" together .  I very much believe that being positive and happy is the best way to cope with one's  illness.  Try to take control of your life even when you feel out of control and be appreciative of what you do have, as there are others in this world that are much worse off than you. Accept life with it's ups and downs, even though it may seem very unfair at times.  You will most likely experience days where you are tired, weak and perhaps in pain.  You will also go through the roller coaster of emotions in trying to deal with this your illness. You may be sad at times and you most likely will grieve for your past lifestyle. You will probably get very angry and you will get frustrated.  Sometimes you will feel hopelessness and fear.  These are all normal to anyone that has become chronically ill.  Ask for help if you need it and try not to feel guilty or useless.  It is not your fault that you got sick and it is okay that you can not do what others can do.  Each of us has our own unique qualities and strengths that we can contribute.   It is so important to be hopeful and have faith that things will get better, as they probably will. So to all of you, be strong and be happy, try to enjoy life and stay as active and as healthy as you can.  

Over the years I have learned to cope with my disease and to adapt to my always changing  life.  There are many great adaptive devises that make life so much easier. My disease has made me a better person, stronger and more compassionate. I have always had tremendous support and love from my husband, my parents, my brothers and my sister and all my wonderful friends.  I know it has been very hard on them, emotionally and at times financially and I couldn't have made it through all of this without them.  Any of you reading this, thank you, I love you all so much and will always be eternally grateful to you.

My best to all of you and remember,  You Are Not Alone.