The following are the comments I gave to a support group about my book, The Marvelous Transformation: Living Well with Autoimmune Disease and how one can use the messages within it to deal with the mild, acute, hopelessness, sadness, and even depression that sometimes results from flares of chronic illnesses like myositis.Read more
Over the next few weeks I'm going to explore the issues as presented by the candidates for president through the lens of conscious and spiritual living. Since many of my fans have illness and/or disability in common I thought I'd start with that.Read more
A message for my friends with chronic illnessesRead more
By Scott and Emily Filmore
A recurring topic of conversation in health support groups is the difficulty spouses, partners, parents, siblings, children, or friends of people with chronic illness show in understanding and accepting the realities of their loved ones’ health situations. This is often compounded for people with the so-called invisible diseases such as myositis, fibromyalgia, MS, chronic migraines, and other autoimmune diseases because no matter how bad patients feel on the inside, no matter how weak their muscles, no matter how much fatigue they struggle with, they often look normal to the outside world....
...Scott Filmore, Emily’s partner of thirteen years, weighs in on what he does to help create a successful marriage even as they face the daily struggles of her multiple health issues.Read more
(How a celebrity body-shaming piece led me to write this article).
In "The Marvelous Transformation: Living Well With Autoimmune Disease," I write about taking back control of our body image even when chronic illness continues to damage it. I ran across one of these body shaming articles this morning, directed at celebrities and the "worst examples" of aging and I got angry.Read more
Chronic illness can steal everything from a person. The ability to: move freely through the world, sleep, have a career, pursue their dreams, the chance to live pain-free, and the opportunity to have an active life.
People with chronic illness are not sheltered from reality. They know their lives have made a dramatic shift: The majority of them had full, happy, lives, prior to becoming sick. That means they are mourning much of the life they unwillingly lost, including the friends that decided it was too much work to maintain a friendship. I teach people to concentrate on the positives in their lives; to practice gratitude for the friendships that have survived because those people are their true friends.Read more
Fatigue is a difficult concept to explain. People repeatedly attempt to paint a picture and yet nothing seems to rise to the level of its severity and effect on life. Fatigue is a physical, mental, and emotional phenomenon. It robs you of your ability to move, think, talk, and act. It causes you to miss out on life with your family.Read more
It’s too dark! The walls are closing in! I can’t breathe! I can’t sit still! Get me outta here! These are the thoughts I expected to have when I encountered my first F.LO.A.T. last night because I have lived most of my life with claustrophobia.
Instead, I found the warm embrace of perfectly calibrated water, warm and silky to the touch, buoyant (even more than I had imagined), and a feeling of complete safety.
Thanks to Governor Jay Nixon for the proclamation for Myositis Awareness Month in Missouri.
#myositisawareness #myositisRead more
Creating awareness of a rare disease such as myositis is vital to not just informing the public of the disease but to also help myositis patients find resources they can call upon to help them cope with their disease. The Myositis Association (TMA) had the US Congress designate September 21 as Myositis Awareness Day, and Central Recovery Press encourages support groups to use this landmark day to draw attention to the disease and the help that is available for those living with myositis, as well as for the those who are the caregivers of a myositis patient.
More than eighty health conditions are caused by autoimmune disease, the American Autoimmune Related Diseases Association (AARDA) estimates that fifty million Americans have an autoimmune disease. However, myositis has much lower numbers and is classified as a “Rare Disease” by National Organization for Rare Disorders (NORD).
Myositis is the umbrella name for dermatomyositis, polymyositis, inclusion body myositis, and juvenile myositis. These chronic diseases are dangerously undiagnosed, under-treated, and misunderstood. Often the people suffering from them are dismissed and minimalized by the doctors in charge of their care because of a lack of knowledge due to the disease’s rarity. It is vitally important for patients to get prompt, appropriate, and competent medical testing and care. Patients must also learn to advocate for themselves and develop coping mechanisms to live well within their new normal.
The Marvelous Transformation is a great resource to share with medical practitioners and family members to show a real-world account of what it is like for patients living with myositis. It also provides patients with practical information and strategies to ease physical, spiritual, mental, and emotional discomfort. Emily Filmore discusses her twenty years of disease experiences, including the struggle to get diagnosed, the daily truths of living with myositis, importance of a strong support system, and lack of clear and effective treatment regimens. She recounts her voyage of heartache and triumph through therapeutic relationships with approximately twenty doctors, innumerable medical tests, surgeries, procedures, medications, and alternative health modalities.
Emily has shown that a chronic illness doesn’t have to lead to chronic unhappiness. She empowers her readers to take control of their own realities by advocating for themselves for proper care, practicing moments of gratitude, finding the gifts in a negative situation, and providing specific tips for how to transform their own lives.
Emily Filmore serves on the Board of Directors of Myositis Support and Understanding Association, Inc. a new nonprofit started by patients for patients. More information about Emily and her book can be found at emilyfilmore.com and centralrecoverypress.com.
Emily participated in Myositis Awareness Day Activities in multiple ways.Read more
Hi, I’m Sage and I am nine years old. My mommy has dermatomyositis. I have a list about the best and suckiest things about having a mommy with Myositis.
1. What is the suckiest thing about my mommy’s disease?
Having her stay in bed all day because of her pain, migraines, and tiredness.
What is the best thing about her disease?
Being able to stay home, cuddle, and not be running around all the time...
Maintaining a positive attitude is my goal each day when I awake. I generally do a pretty good job of living well despite my chronic diseases; but I am a fallible human being with emotions and physical sensations. I experience stress, sadness, anger, and helplessness just like you. I have a wonderful support system and many coping strategies at my disposal, so I can usually get through any situation. Recently, though, I took the step of finally applying for Social Security Disability and boy has it knocked the wind out of me.Read more
After nearly 20 years of having a chronic, debilitating autoimmune disease which attacks my muscles, I have finally admitted it. I am disabled. There are things I cannot do. There are things I can do. There are times my body gives out and times it exceeds my expectations. I resisted calling myself disabled, for many years, because I believe in the power of positive thinking and I feared that labeling myself disabled would change everything. What I never considered is that it would change everything, for the better.Read more
I had a divine experience this morning - I visited a local gluten free café (newdayglutenfree.com) and had good old-fashioned biscuits and sausage gravy for breakfast for the first time in two years! It tasted so good that I cried.Read more
MYOSITIS DOESN’T HAVE TO STOP YOU, BUT SOME PRE-PLANNING AND PREPARATION MAY BE BENEFICIAL!
One of the most common topics of concern for the women in our support groups involves pregnancy. People want to know the effects of Myositis on pregnancy, if Myositis affects a patient’s ability to conceive and what effects pregnancy has on Myositis.Read more
If you could give up your disease, would you? The answer seems obvious doesn't it? "Of course I would," you may be thinking, but I'm not so sure, myself.Read more