Chronic Wellness

Chronic Wellness

By Annette LeonardHealth & Fitness
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Chronic Wellness episodes

  • Episode 245: TABs
    chronic illness and quality of life,chronic illness and self-worth,chronic illness and lack of control,chronic illness and grief,chronic illness and autoimmune disease,chronic illness and self-talk,illness and relationships,chronic illness and marriage,disability and chronic illness,am I disabled?,person-centered language,human rights model of disability,medical model of disability,universal design,hierarchy of disability,TABs,applying for disability
    TABs (Temporarily Able-Bodied) folks, tend to think of a person in a wheel chair when they picture someone with a disability.
    Where does that lead us with chronic illness on the hierarchy of disability?
    Why was claiming my own disability such a difficult head game?
    Acknowledging that I have a disability made me feel like an impostor.
    Have you applied for disability or are you considering it?
    7 min
  • Episode 244: Disability And Change
    In England, the leaders and community members that we met said, "I am disabled." Not, "I am someone with a disability," or "I have a disability," but "I am disabled." That was challenging for every member of our group who had been taught person-first, human rights framework and believed that it was disempowering to use that kind of descriptor.
    When we explored this further, we learned the reasons why...
    This was a revelation for me. Until *others* shift the systems, structures, and attitudes, I am disabled not because something is wrong with this BODY, but because things are wrong and limiting with how the world is operating.
    *Mobility International USA - for International Exchange Experiences for people with Disabilities
    6 min
  • Episode 243: Universal Design/Access
    chronic illness and quality of life,chronic illness and self-worth,chronic illness and lack of control,chronic illness and grief,chronic illness and autoimmune disease,chronic illness and self-talk,illness and relationships,chronic illness and marriage,disability and chronic illness,deaf or hard of hearing? which is right?,am I disabled?,person-centered language,human rights model of disability,medical model of disability,universal design,universal access
    What do you know about universal design?
    What if systems, structures, and attitudes changed?
    How do any of us benefit from accessible deign?
    While universal deign began as an architecture concept: how do we make our structures more accessible. It was realized that not only do our structures need to change, but also our systems and attitudes or beliefs. When all three of these shift, there can be *real* access for all.
    Until that time, there are real barriers, as real as a curb for someone in a wheelchair, presented by the obstacles of who we've decided the world should work for.
    6 min
  • Episode 242: Models Of Disability
    What is the right language to speak about disability?
    How has that come about?
    What's functional about person-first or person-centered language?
    What is the human rights model of disability?
    If variety is the norm, disability is not outside the norm but is on the spectrum of the norm.
    What is the medical model of disability
    How do we straddle the divide between the medical and human rights model of disability?
    7 min
  • Episode 241: My Introduction To Deafness
    What do you know about sign language?
    Have you ever been exposed to Deaf language and culture?
    Deafness was my introduction to the world of people with disabilities.
    Is it correct to call individuals with hearing loss D/deaf or hard of hearing?
    What is your experience with disability?
    As someone with chronic illness, do you think of yourself as disabled? Why or why not?
    6 min
  • Episode 240: What Is Polymyositis?
    How is polymyositis identified?
    When I was actively muscle wasting I lost 40 pounds in 2.5 months.
    I first noticed having difficulty standing from a seated position, then I had trouble raising my arms above my head, and other impacts from there.
    Because our diaphragm is smooth muscle tissue, things like breathing were also impacted.
    How fortunate I am that we have been able to halt the progress of my muscle wasting is something I'm very grateful for.
    5 min
  • Episode 239: What Is Sporadic Inclusion Body Myositis?
    What is sIBM?
    Why is it so difficult to diagnose?
    Who dose it typically impact?
    Dysphagia, drop foot, falls, these might be the reasons someone goes to the doctor and gets a diagnosis.
    This disease is typically not symmetrical in it's presentation and is NOT relapsing/remitting. Once this disease is activated, it is generally progressive in it's advance.
    Do you know someone with sIBM? What has been your or their experience with the disease?
    4 min
  • Episode 238: What Is Dermatomyositis
    What are the indicators of dermatomyositis?
    The rash that goes along with dermatomyositis, while often uncomfortable if not painful, is so helpful in assisting the diagnosis. The presentation of the rash make it more identifyable.
    Inflammation of blood vessels (vasculitis) cause the muscle weakness in dermatomyositis.
    The pain and weakness tends to be symmetrical and the muscles first impacted tend to be the large muscle groups nearest to the core.
    Tasks likes rising from a seated from a position, going up stairs, lifting objects above your head, are some of the difficulties reported.
    There are no cures for any of the myositises.
    Poly and dermatomyositis are classic autoimmune diseases in that they can be relapsing/remmiting.
    Because this is an autoimmune disease, it is typical to see a rheumatologist for dermatomyositis. One might also see a dermatologist. Additionally, depending on the nerve and muscle involvement, one might also see a neurologist, and if the lungs and heart are involved, perhaps a pulmonologist and cardiologist.
    Do you or someone you know have experience with dermatomyositis?
    7 min
  • Episode 237: Myositis Awareness Month
    For more information Myositis.org or UnderstandingMyositis.org
    What is myositis?
    How do they impact people?
    What are the broad categories of myositis?
    These irreversible muscle-wasting conditions are rare diseases.
    There are no drugs specifically for the inflammatory myopathies, just off-label therapies borrowed from other conditions like Crohns and Rheumatoid Arthritis.
    Do you have experiences or stories of myositis?
    6 min
  • Episode 236: Immunosuppressing Drugs, Rituxan Part 3
    How do I feel after the infusion?
    What are the benefits?
    What does the muscle wasting feel like?
    With chronic pain and chronic conditions, any bit that we can carve out or reclaim is giant territory that is not ceded to our disease.
    My infusion gives me several months of positive effects. We've gauged the time of my infusions based on when effects start to wear off.
    Consider these autoimmune diseases without the benefits of modern medicine. How fortunate we are to live during a time when there are these options.
    Have you tried infusing meds? Have they worked for you?
    7 min

About Chronic Wellness

From the publisher's feed

Are you one of the millions living with a chronic illness or pain? Our diseases may be very different, but we have many of the same experiences, obstacles and frustrations. We are all working for a better quality of life knowing that pain and limitations will be our traveling companions. My name is Annette and I'm the host of Chronic Wellness, a brief, weekly, podcast where we talk about it all: sex, self-care, mental heath, loss of identity, anger, how to navigate health care and have less days that suck so hard.