Chronic Wellness

I've mentioned before that I used to be a singer. Lung disease has kept me from singing. I'm singing a little here and there to work on increasing my lung capacity. My voice is so much different than it used to be, and yet, these are the words I long to hear. I want you to hear them, let them wrap around you like someone holding you close. Libby Roderick wrote this song and I wrote a second verse...

Why do I do what I do? With a backdrop of chronic pain and illness, life is often hard. How do we cultivate joy, playfulness, delight, wonder, and vitality? Finding the answer to that -- again, and again, is my mission. How do we do we find these moments and then expand them? Glimpses of beauty are everywhere -- here's where one came for me last week. Where is the crack that's letting the light in...

After being sick for several days a friend asked if I had COVID. With lung disease, COVID has seemed like a death sentence. Getting tested on the weekend was no small trick. I work hard hard to not "borrow trouble." Sick and tired of wearing a mask. I got the results that it is not COVID. While it isn't COVID, I don't have more clarity about what it IS. It's not easy to keep our mind when fear is...

"My cup runneth over" While this phrase is usually used to mean abundance, it feels like it applies to me right now in terms of new horizons of hardship and overwhelm. My wife got a concussion a bit more than a week ago. This is a concussion of a different order. Trying to manage the dogs, the household, her care, and myself, is too much. The Budda says, "before enlightenment: carry water, chop wo...

While Victor Frankl was enduring the nightmare of living in a concentration camp, he created a sanctuary for himself in his mind. Brick by brick. Chronic pain and chronic illness bring some similar kinds of suffering. Frankl wrote, "when we are no longer able to change our situation, we are challenged to change ourselves." We are creative and imaginative animals. From our earliest days we are crea...

My doctor gifted me with an Inogen concentrator at my appointment last week. She had it for me because a patient had died. That patient was Danya. Danya was a port in the storm for me. Educated at Havard, ME/CFS came for Danya at her prime. She had to leave work and come back to the west coast to live in her parents' basement. She suffered tremendously. She was in so much pain. She lived a life of...

We had a chance to go camping this weekend. We were around a group of people who don't know me well. This is unusual/unfamiliar territory. Most people in my world have lots of experience (at this point) with my illnesses and limitations. What happened in this setting? Old tapes started to play without my active awareness. I felt excluded -- not intentionally but in all the discrete and subtle ways...

What do you sleep on? Sleep is elusive and I struggle with pain. Because I spend more than half of my life in bed, the quality of my bed, bedding, window coverings in the bedroom really matter. I've since learned you can spend as much as you want on bedding. I prefer sheets that are soft, thick/heavy, and fully breathable. I've tried cotton, bamboo, and recently linen. I'd heard good things about...

Feeling my rage. Chemo treatments keep me alive. The way to fight autoimmune disease is to suppress my immune system, a primary way I do this is with infusing meds. I've recently learned that NONE of the full-time staff in my (all-autoimmune) infusion clinic, are vaccinated. I have 17% of my lung function. I would not survive COVID. We are a medically fragile population. It feels like I'm having t...

Do you have a DNR? Why would someone have a DNR? Like an advance directive, this is an official document you would have on hand and file with local doctors and hospitals. If these are your wishes, you should let your loved ones know. Why should your next of kin know if you have a do not resuscitate order? Is a tattoo of DNR sufficient? If you don't want to be resuscitated, who should you call when...

Dressing for the way I want to feel is part of how I manage my well being. Hence my "slay" earrings: one part attitude, one part aspiration, these serve as a reminder. For those of us with complex medical conditions, the time arrives when we must consider whether to wear medical ID jewelry. Here are two ways that you can adapt or were medical identification on your Apple Watch, FitBit, or other sp...

You know I'm a fan of "This Is Us," in part because it mirrors my family of origin, but mostly because it is so well written. Beth one of the characters said, "I'm a dancer who doesn't dance." I cried as I thought: "I'm a dancer, singer, climber; who doesn't..." When I focus on the things I have lost, it is painful. Byron Katie recommends that we not believe our most stressful thoughts. Put anothe...

June is Pride month. I've made no secret of my queer identity, but if you haven't watched my Coming Out Monologue -- I recommend it! I didn't tell my mom about my relationship with my wife for three years. That was so isolating and painful. As a fem, I have been regularly identified as heterosexual as others. Changing my hairstyle has shifted that. Living in a place where it's fairly safe to be qu...

Growing up, my grandmother sewed all my clothes. She taught me how to sew, with great precision. I marvel now at her skill. Today I am wearing a shirt my grandmother made in the 80s for my mom. It lights me up and brings me so much joy to wear. Each day, in the midst of hardship, I am seeking ways to find "wellness" in the midst of this difficult, chronic life. My question today was, "am I as comm...

While I don't think the word "toxic" needs to be put in front of every other noun we can find, I heard this combo and thought, "yes, I see why we need this vocabulary." In relation to health, and perhaps other spheres, we need this term. We get sick as a member of a community; we heal as one, too. As I thought more about this concept, it also struck me as very white - the notion that we are indepe...

I pride myself on being a good listener. And yet, my wife had to sit me down and talk to me about my ability to listen to her. She proceeded to explain how I have a blind spot where it relates to listening to her about me. This weekend was exciting for all the wrong reasons. I fainted this weekend. Hitting my head and being on blood thinners means that I was at increased risk for a brain bleed. Ge...

How do you live in your limits? I was away for the weekend which was such a gift. I took a walk with friends that I had researched and knew was going to be within my limits. In the middle of the walk, things changed... However, I didn't make a different decision. The price I paid for that mistake has cost me almost a week. How do we live to each day's limit when those limits are changing from day...

May is Myositis Awareness Month. There are a few varieties of myositis. I was diagnosed with Polymyositis about 8 years ago. Watching muscle dissolve off my bones at an alarming rate. The large, smooth muscle groups, impacted by the disease were liquifying at such an alarming rate I lost 40lbs of muscle weight in just over a month. I lost the ability to stand from a seated position, to walk withou...

How do you metabolize a difficult diagnosis? What do you do when you learn: it's terminal, it has no cure, it is the thing you were afraid of, it is something you've never heard of but the description is big and scary? In my life, my wife believes that we pick fights with one another rather than address the difficult diagnosis. What are the skills? First I numb out. I try to ignore or forget about...

What's up with the blood clots? What does this mean for my ongoing treatment? Discovering that tears were not an indicator of sadness. I'm angry. I'm clear about the complexities of putting me on a drug that hasn't yet specified a rheumatological dose, but I have found resources to help mitigate this difficulty. These illnesses limit my available time and energy, to be spending my time and energy...

You may notice big visual changes if you're watching this on video. I'm rocking my hair, newly cut and dyed, down! As well as makeup and false eyelashes. Why? Why? You may be asking is this sick lady going to all that trouble?! Well, it has to do with my philosophy of dress for the way you want to feel. I was out in the world today being a professional patient. Shout out to comments and subscriber...

More than a year into COVID-19, think about all that we didn't talk about or know back then. What does the world look like on the other side of the pandemic? How are you all managing the pandemic and your chronic illnesses? I wonder about your circumstances and how you're managing all the hardship. Cut yourself some slack. Are you extending your grace, love and compassion to yourself?

Why was I absent last week? I have been overwhelmed by diarrhea and thrush. I didn't show up because I didn't know what to say to you. When these illnesses eclipse us, we can't keep up with housework, relationships... life. This creates an opportunity for shame to start telling me things about "I'm not enough." When I am humbled once again, by being out of control. I get a chance to practice remem...

What will the end of this pandemic look like -- from hygiene habits to working from home? Which things will go back to "business as usual" and which things will be permanently changed? In the last year, with the exception of doctors' appointments, I haven't left my home. As I think about being fully vaccinated, what will change for me? In this transition as we are pulling out of some of the worst...

Here we are a year into this virus. When will this pandemic be over? What are the activities that will indicate returning to "normal" for you? In this episode I'm thinking about the personal threat of this virus and the long-term implications. While I do see my life expanding as I get vaccinated, I also acknowledge and am working to accept that life will not be returning to normal. When, for you,...