Chronic Wellness

Two weeks ago I had my PowerPort removed. What does a PowerPort do? Why did I have one? Why are they useful? Having a port has been very handy. This was my 2nd port. However, because of my new clotting disorder, my body can't tolerate a port. What will happen with my treatment not that I don't have a port? Do you take Rituxan/Rituximab? What's your dosing schedule? I'm not yet out of the woods for...

On Friday I'm having surgery. I'm having a PowerPort removed that we've never used. This is the port that brought blood clots and emergency surgery at the end of the summer. I'm nervous about the outcome of the surgery. I'm eager to have the device out.

I'm celebrating my 25th anniversary with my wife this week. Today I'm talking about my bisexual identity. What is bisexuality? What is pansexuality? Why is it important to come out? Bisexuals in long term relationships are often invisible because they appear to be either straight or gay. Having found a loving, generous, partner who will walk by my side in the midst of tremendous hardship is humbli...

Do you have high stakes appointments? Ones where you're predicting or waiting for bad news or hard diagnoses? I have a team of doctors I see in Seattle who monitor my lung disease. We typically see them every 3-5 months. It's now been a year (because of COVID). With mounting anxiety, lousy sleep, and a fear of what the tests might find, we headed up. Do you have terminal or life threatening condit...

How does chronic illness impact having a future? When life is the same day after day after day, it takes a cumulative toll. What happens when illness takes us in our prime? My peers are celebrating milestones and I don't get to join in. It's difficult to not bend toward despair. How do you grieve the future you won't live? I'm Annette Leonard, speaker, coach, and sick person who believes that my i...

What does it mean to not have a future to look forward to? How do I reconcile this moment to moment? What does this mean for those closest to us? Having been sick for close to half of our relationship, my heart breaks for the life my wife doesn't get to live. How lucky I am to have someone to bear this chronic life with me, and yet, it's hard to not feel like I'm tanking her future. How do you rec...

This is the day after MLK day. Chronic illness impacts BIPOC at a rate 2 and half times more frequent than those of us who are white. That is an OFFENSIVE statistic an there are many contributors to that reality. White supremacy and the stress-disease are chief reasons these statistics are so abysmal. What can be done? As a white person -- what can I/we do to make change in this area? Talk to othe...

Happy 2021! Are you making resolutions? I am seeking clarity this year -- particularly as it relates to my health. How can I become a content expert in myself and my disease? Here's how it served me recently to be knowledgeable about my illnesses and my medical history. No one will advocate for me as hard as I will fight for me. Know your body and your illnesses, that's my pro-tip. What stories of...

When quarantining from my wife, it seemed like everything went wrong. What happens when you combine a confirmed COVID exposure, with the smoke alarm going off, with a 14 foot ladder, and poor decision making under stress? Tears. Why would First Alert make their Carbon Monoxide detectors so hard to read? Here's a glimpse into my life that demonstrates the fact that I don't make good decisions while...

Why is receiving so difficult? Where independence is so prized, it is difficult to be someone who is dependent upon others to meet my needs. Having needs does not make me needy. What if the best gift I can give someone is the opportunity to help me? I'm Annette Leonard, speaker, coach, and sick person who believes that my illnesses do not define me. If health is the absence of disease and wellness...

Quarantining from my wife for more than 18 days, I learned a lot about myself. On a day with too much -- a near accident, an ear infection, my inability to keep up with household chores, I hit a threshold and broke down. Falling apart I was able to lead myself back to self-compassion. Because it is a practice, I could remember to shine the cleansing light of kindness on myself and remember that to...

Is agency the antidote to hopelessness? What, with chronic illness leads you to feel hopeless? How can agency interrupt that feeling? Here are some of the ways agency intersects with my experience of chronic illness. What does agency have to do with the loss of the future I imagined or dreamed for myself? One of my sacred texts is Pema Chodron's "When Things Fall Apart," she says to "abandon all h...

If hope is a double edged sword, what are we left with? Hopelessness? Here's another suggestion: agency. When I have self-determination, I am not hopeless. Chronic illness takes so much of what we thought life would look like. Agency gives me some say over my choices -- even the little ones. And having this say makes a big difference. Is this true for you? I'm Annette Leonard, speaker, coach, and...

How can we preserve our well being while alone during the holidays? What habits or traditions do you need to preserve? What are the fixtures in your life that you need to maintain? Creativity is crucial. What are your creative outlets? Are there new pursuits you've been wanting to try? Think ahead about what feeds you and lights you up. Make a list of the things you'd like to do when you're feelin...

What does it take to be alone at the holidays? What do you need to be emotionally safe at the holidays? Who can I check in with or can check in with me? How do you think ahead about physical safety? What things in your environment are hard to navigate? Planning ahead can make the difference between successfully and safely handling the time alone or not. Will you be alone at the holidays? What supp...

How much should I pay attention to my pain? How do I live with chronic pain? How does turning pain out get me into trouble? How does it serve me? How do I discern? Given that there aren't obvious answers, this is one I'm still working on. I journal daily about my migraines. I'm now rethinking my habits of pain tracking so I can better notice which pains I may need to bring to my doctors' attention...

Have you ever played double Dutch? How do you join that rhythm already in motion? Once I've lost momentum, how do I start again? We are all hurting right now. In times of duress it is easy to abandon the things that serve me. It's as easy as my next decision. One choice at a time. Each of these choices are a declaration that "I'm worth it." And so are you. What steps are you taking to assert your...

We all want control. How does chronic illness impact that? Loss of control is a hallmark of chronic illness. What does my hair have to do with chronic illness and control? When there is so little that I can control, when I am overwhelmed by so many things happening in my life and in the world around me. However, today: I have a clean junk drawer, and my hair is dyed. In the midst of these bodies t...

I'm here. I've been laid low. This most recent health crisis left me raw. 2020 has been hard for so many of us. Even before the blood clots, I was telling you about what a train wreck my life was. What does groundlessness feel like? I have felt swallowed up by all that's been happening. I'm unsure how to get back into the rhythm of Chronic Wellness. Knowing that part of figuring that out is in the...

Episode 286: Blood Clots by Annette Leonard

Episode 285: Port Problems by Annette Leonard

What more can we imagine about accessibility? Today's thought was prompted by reading I'm doing in Layla Saad's book "Me and White Supremacy," thinking about tokenism. Who are the groups you represent or help make sure are at the table? When can I be asking "who have we not heard from?" "Who is not represented that needs to be?" Similarly, where are those of us with disabilities - particularly in...

What is remarkable about the ADA? What else could the ADA be doing? What's the difference between access and inclusion? What could full inclusion look like? When barriers are removed, how can people proceed? Have you participated in places/spaces that are doing this well? We'd love to hear about what that looks like!

How did the ADA not go far enough? This is a law that was put into place without an enforcement body. How are complaints about access currently addressed? How could we have more comprehensive oversight or accountability? What has been your experience?

What does "reasonable accommodation" mean? Why is it one of the things we got right? How does it impact the provisions of the ADA? Here's a brief discussion of one of the things we got right with the legislation.