All Episodes
Episodes
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...
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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,...
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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...
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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,...
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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...
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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...
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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...
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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...
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Episode 235: Immunosuppressing Drugs, Rituxan Part 2
How do I get my Rituxan treatments?
How does prednisone impact getting an infusion?
What are premeds and why are they important to the process?
Because I am at a rheumatology clinic, I am with other autoimmune...
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Episode 234: Immunosuppressing Drugs - Rituxan Part 1
Autoimmune disease is our body fighting our self.
Without Ig products I needed other meds online. My doctors decided on Rituxan/Rituximab.
During the 2.5 years of IVIg/SCIg I didn't catch colds and flus.
However,...
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Episode 233: Trusting Myself About Treatment
What happens when we don't agree with our doctor's recommendations?
Do you know your body well enough that you can make decision about the best course of treatment?
My doc in Seattle was frustrated that I...
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Episode 232: The Adventures Of SCIg Part 2
Would I get meningitis with SCIg?
With weekly infusions of SCIg and my lap dog as my companion, I began the process.
After 6 weeks bam, meningitis.
So, I called it off.
When is the treatment worse than the disease...
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