Voting- about disability

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

Yet another thing stolen from me by dermatomyositis...my bicycle

A message for my friends with chronic illnesses

Read more

Why I walked out of a restaurant and why you should too: advocating for safer food through your dollars

I've talked before about how becoming spiritually aware leads one to see things more clearly, both positive and negative, in the world. This dawning of awareness is not always easy to sustain without comment. This extends to the ways businesses conduct themselves, especially after you see how other business are able to handle the same situation. I recently had one such experience.


Read more

The three parts of me: body, mind, and soul enjoy a little wake-up call

(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

My disease is worse than your disease: Why comparing our struggles damages us all

 In conscious living, people work to move away from society’s penchant for competition and towards a more collaborative paradigm. One envisions the world as a place with enough necessities for all and all people being equal…in this model one tends to stop comparing, and striving to be more than, and/or feeling jealousy toward, others. This is the spiritual context in which I live (most days).

Read more

What does fatigue feel like to you?​ The difficult job of describing fatigue

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

Unexpected Benefits of Writing about My Autoimmune Disease

Benefits of authentic writing:

Can’t hide from your truth

A great outlet, Get your emotions out

Explore details you may have missed

Seeing the sum total of your experience, good and bad, puts it into perspective

Sharing and helping others gives you purpose

Read more

NINETY MINUTES OF HEALING - F.LO.A.T.

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.

Read more

PRESS RELEASE BY CENTRAL RECOVERY PRESS

Myositis Awareness Day

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.

The Marvelous Transformation by Emily Filmore

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.

http://centralrecovery.mailerlite.com/a8u7p8/9062386718/j3d5/

THE MOST SUCKIEST BUT BEST THINGS ABOUT MY MOMMY HAVING MYOSITIS

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...

Read more

SOMETIMES YOU HAVE TO PAINT. . . TO SURVIVE

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

HOW ADMITTING, "I'M DISABLED," WAS SELF-EMPOWERING

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

SO YOU WANNA' HAVE A BABY?

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

MEDICATION WEIGHT THERE IS MORE TO IT THAN YOU SEE

If you had seen me 10 months ago you might have mistaken me for a skinny girl. At 5’3 (on a good day) and 130 pounds, I had narrow hips, hollow cheeks, a defined chin and neck, thin arms, and my legs didn’t rub together when I walked. My stomach didn’t protrude and my clothes glided over my body. I could fold myself into a chair the way you are “supposed” to and I had a long neck and cute little crinkles in the corners of my eyes and mouth when I smiled. But...you would have been mistaken.
 

Read more

MYOSITIS-INDUCED DEPRESSION SOME COPING STRATEGIES TO BRING SOME LIGHT BACK TO YOUR DAY

Written with Jerry Williams

Living with Myositis is hard. Let’s just put out the truth and give light to the darkness:

  • Maybe you don’t feel well, although you can’t put your finger on why so you feel frustrated.
  • You can’t do the same things you could do ten years ago, one year ago, maybe even yesterday and it makes you angry.
  • You can’t lift your children, the groceries, or even a backpack/purse and you feel helpless.
  • You miss out on family activities due to fatigue and you feel alone.
  • Someone says “You don’t look sick to me,” and you feel doubted.
  • You have so much pain sometimes that you wonder if fighting is worth it, and you feel like giving up.
Read more