Chronic Wellness

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Have you heard of IVIg? It is a blood/plasma product administered by infusion. I was administered IVIg by the pulmonologist who was overseeing my care as I was working to get on the lung transplant list and waiting to be transplanted. An uncommon side effect of IVIg is meningitis and I got it with my first infusion. I was getting IVIg for a week of every month for 2.5 years. I got meningitis five...

How can chemotherapy agents help halt the advance of autoimmune disease? Some examples: methotrexate, and Rituximab In the case of Rituxan, the agent keeps the body's B cells from maturing. This reduces how I fight infections and viruses but also how much I fight my own tissues. Thankfully, we've generated some creative ways to stave off how to keep our bodies from attacking ourselves. Why are aut...

Autoimmune disease - what is it? Where in the body does it happen? My cluster of autoimmune diseases, called antisynthetase syndrome, attacks my skeletal (or smooth) muscles, my eyes, hands, joints, and my lungs. What kind of doctor do you see for an autoimmune disease? That isn't ALWAYS the case and they are often hard to get an appointment with. Here's a brief background. Do you have any autoimm...

Getting an autoimmune diagnosis can take 8-10 years. Now you have a name. You know you are not alone. Now you are looking for your solutions. And, when your body is attacking itself. It is not a simple thing to stop. The biggest tool in their arsenal, the most commonly used first line of defense, high-dose prednisone. It is a miraculous and fast-acting drug with remarkable and intense side effects...

What is waiting to be born in you? Where is that edge between fear and excitement? You have superpowers inside of you. There is no one who has walked the planet before with your exact combination of skills and gifts. If you are not sharing them, you are robbing us of those. There is no time like right now than to be sharing them. Let that light shine. You are one illness, pandemic, or uncertainty,...

How can the process of jewelry making be a a metaphor for surviving hardship? What about resilience is like hammering wire? What can we do to keep from becoming brittle? Hardship can pull us into a stronger, improved place. And there is a point at which hardship can break or buckle us. Because we cannot control the pounding, what within ourselves can we control? How do we remain supple? Part of it...

How does disaster or chaos allow us to be born anew? Chronic illness has given me that gift. What precedes rebirth? Death. What am I ready to let go of? Is it time to stop saying "yes," and then resenting it? Do I mean for others in my household to help more with chores or meals? Am I ready to listen deeply to my needs? What has to die for my new self to be born? It's time to make a list.

How do our lives mirror the cycles of nature? We've just had a new moon, Easter, and spring is underway. I'm thinking about renewal. While most all of us were not on the planet for the last Pandemic, many things on the planet were not the same in the world for the last round. In the natural world, new life is preceded by death. For new fig leaves on the tree, first the old ones had to die and fall...

When the story gets hard, that's when the story gets good. Who wants to hear that when things are hard?! Can you be in this time of difficulty and see the future possibilities? The phoenix only rises from ashes. We must keep pushing because as Twain says, "the only way out is through." Vaclav Havel the leader of the Velvet Revolution in the Czech Republic had the notion of the "parallel polis." Th...

I am feeling fear, sadness, and anger -- and those are just my emotions. Bodily I am in a bad state. I am in a flare, if not a relapse. However, what I want to talk about is joy. It is said that "perfect love casts out all fear." What the hell does that even mean?! What I do know is that love is our origin, and that the more we can embody love, the more we push away and repel fear. It's like a mat...

FOMO - what is it really? Does it matter? How is it relevant now, during shelter in place? Remember the studies of the chimps who languished without even a sock-puppet mother to love? As Brene Brown says, "we are hard wired for connection." So, our fear of missing out, of connecting is REAL. Here is an opportunity to examine and prioritize what really matters and what we don't want to miss out on....

Figuring out how to feed ourselves as people with chronic illness can be one of the most difficult parts of self care. With my wife out of work, she has more availability. While I used to be the primary cook in our household, I even with my low capacity, I can direct her and together we can lay in some food right now. Here are some helpful tips: When you make a casserole, lasagna, soup, chili, ste...

How do we do a better job with shelter in place? How do we handle the passage of time without the typical markers? What do we do when the days are yawning out in front of us? We learned from the movie "About a Boy" that the day can be broken in to units. For me, I use 90 minutes as the base of my unit. It's easy to imagine that a shower, putting on lotion and getting back into bed will take a unit...

In this episode I'm thinking long-term. Make or find your to do list and go hard on the obscure or differed to dos. Clean out the hall cupboard (including old prescriptions!). Re-calk the sink. What are the things that you haven't made the time to get around to? Maybe a room needs its paint touched up. A few minutes a day can really add up!

Some of us with chronic illness have been practicing shelter in place for a long time. Not having stamps is no excuse, you can get stamps delivered. Letter writing is good for the soul. The connection made in cards or letters is different than that made by phone. The time spent writing letters can be quiet, off-line time in your house. This can be conducive to a lead in to a nap, if you have child...

I'm well versed with social isolation. Perhaps you have a film festival during this time. Get creative, maybe this is last year's Oscar nominees, or the animated films you loved in the 3rd grade, or all films staring Jason Bateman -- the only limit is your imagination. Select the movies, choose the timeline, pop the corn, and get started! This activity is enhanced by sharing it with others.

What hobbies have you always wanted to learn? What hobbies have you tried before but have abandoned? Calligraphy? Embroidery? Sewing? Gardening? You can learn anything on YouTube! For those of us who are sick, of course time and energy are a consideration. Tell me what you have tried or are considering trying. This is one more way to have your mind turned toward healthy things during this strange...

What makes you curious? What did you want to know more about as a kid? What intrigues you? Dig into those and share what you're learning with those around you. As some of you know I'm captivated by the concept in some species and peoples of "dead reckoning." I am always eager to learn more about that and many other subjects. Feeding our mind is a great way to tune out the anxiety, turn off the 24-...

For those of us who practice sheltering in place because of illness have been training for this. We are experts. Today's tip is that you should be exercising. Move your body. Do what is possible for YOU. If you are healthy, get out and ride a bike, do yard work, or other things to stay active. For those of us with more limited capacity, do what you are capable of without hurting yourself. Movement...

I look a mess today. I haven't showered, I hurt, I'm not sleeping. Perhaps this is a flare. If not, this is a relapse. I'm afraid of what this could be and am trying to maintain a present moment focus. As an empath, could this be me feeling what's happening to the collective? I'm missing my mom.

People in my world are having slightly out of character moments of meltdown. Emotions are running high. Here in Oregon we've been asked to shelter in place for about three weeks now and tensions, boredom, and other strong feelings are coming out in unexpected ways. Pressure, heat, and darkness can make diamonds. However, those same conditions can make a mess. We are in a global crucible. Anything...

How can our illnesses mirror the Heroine's Journey? The hero's journey is so compelling. We are drawn into that messaging and are looking for our redemptive conclusion. However, most of us with chronic illness don't achieve those ends. The story of trauma, loss, grief, and going into the underworld that can give us a framework for understanding what happens to us with illness. The roots system of...

When struggling with mysterious illnesses, what is the significance of privilege? What is the significance of being believed? How do we find practitioners who will be curious and invested in us? Why is this so rare and where do we turn? What is functional medicine and why would you want to start here? Win a copy of Sarah's book on 4/17/20! Go to my Instagram @theAnnetteLeonard or Twitter @Annette_...

On today's episode I'm hosting my first guest! Sarah Ramey, the author of The Lady's Handbook for Her Mysterious Illness is joining me for Part 1 of our conversation. As her health was unraveling, she started writing to try to understand what was happening to her. "You are not crazy. And you are not alone" is the thesis of this book. With so many of these mysterious illnesses, the dominant experie...