Chronic Wellness

What are the impediments to dismantling systems of injustice? Why are conversations about race so difficult? When I'm held accountable for my 1) racist 2) privileged or 3) non-ally behaviors it's painful and so easy to get defensive. When my identity is challenged it feels threatening and it is difficult to press on. However, when I pan back and take myself out of it, I can see that the person hol...

What are my reflections on whiteness? How does being in touch with my whiteness inform my perspective? White privilege is based on whiteness being invisible. We have likely not been told we have to represent our race. If you aren't already, start talking about whiteness with other white people, particularly your family. Would you rather your children learn about sex and violence from TV and kids a...

Commitment is required for the work of dismantling white supremacy. How is today's uprising going to be different from those in the past? For change to occur, this work is a long game. When I say and do things in error, I must accept that, take time to heal/figure my shit out, pick myself up and keep going. Curiosity, love, and commitment, three skills that are necessary that we white folks need t...

Can we solve a problem with the same energy that created it? I don't think we end hate by meeting it with hate. I think love is required. We must love ourselves and one another. Self-love because we white people are not used to seeing ourselves in a negative light around issues of race and equity. If we say things and get it wrong or are afraid to say things and get it wrong - we need self-love to...

How is shame like vampires? Why is it so difficult to hear information about ourselves that doesn't fit with what I believe to be true? How should we receive race related criticism? We shouldn't manage our white guilt and shame with BIPOC. Shame can derail our work if we do not allow it to be aired so it can dissipate and be gone. Reading Resources Ta-Nehisi Coates’ article, The Case for Reparatio...

What skills are required for dispute resolutions? A mind that stays curious -- remains open, engaged, questioning, able to see the possibilities. Can you hear about another's lived experience? Curiosity is a key skill in unlearning white supremacy. We must be curious to learn about the systems that continue to prop up and sustain the inequity of white power. To gain understanding and make change,...

How do we change our habits? First we must see and name them. Individuals cannot change what is happening in our nation until we acknowledge what has been happening. While these systems predate us, we now all play a role in their continued existence. Acknowledging that I have these privileges, naming, and surfacing what is true, is the precursor for change. We cannot change what we don't name or s...

What does it mean to personally disarm? How do we do that? How do I embody practices of love? This relates to what's happening in the world right now in the wake of George Floyd's death because the more I can become less defensive, less fragile, less tentative, less uncertain about my role in white supremacy and structural bias, the more opportunity we have for creating a different society.

How do systems of injustice get dismantled? We, the powerful, must decide it's time. Are you fluent in race conversations? Do you think of yourself as having a race? How is talking about it critical to change? White is a race, and we must be more comfortable talking about race. What kind of world do we want to live in?

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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...

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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 o...

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?

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...

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 bee...

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 ten...

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...

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 disea...

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 patients during my infusion. That is also a therapeutic part of the treatment. We learn from each other and share war stories, share tips, share the burden of living with these illnesses.

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, since being off IVIg, I catch any and every virus that's circulating. That was a tremendous benefit. The difference is remarkable. Our bodies cannot rally a defense on immunosuppressing d...

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 couldn't/wouldn't continue with Ig products for treatment of my autoimmune cluster and pulmonary fibrosis. Lung transplant was going to be unlikely or at least a long shot, his job was to preserv...

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 itself? How do you discern quality of life over quantity of life? Have you had to go against a doctor's recommendations? The cost was too high to pay. If I only had a few months left to...

What happened when I failed IVIg? My doctor wanted me to try SCIg. Using a giant syringe with a craning pump at home, I was trained to administer SCIg to myself at home. Each of the five lengths of tubing I had to attach to myself with a small needle, injecting the medicine under my skin into fat tissue. Why do we pay so much for people to donate plasma? Because we are making pharmaceutical produc...