Chronic Wellness

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. Getting up in the night two nights later because I couldn't sleep, I had a neurologic event that should have prompted me going to the ER. When I wouldn't, I put that burden of anxiety on my wife. Once we got back from the ER (later that day) and learned that I wasn't bleeding in my brain, we got a good night's sleep and my wife sat me down today to talk about how things went and that we need to do things differently.

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 to day?

How do I keep from shrinking when I miscalculate?

How do you keep from living small?

How do you figure out your limits?

What happens when you over shoot?

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 without assistance, and to roll over in bed on my own.

There are 4 primary types of Myositis: dermatomyositis, polymyositis, inclusion body myositis, and sporadic inclusion body myositis. There is also a juvenile onset type of myositis. They are all considered to be autoimmune in nature and incurable.

There are great resources for patients and care givers on Myositis.org or UnderstandingMyositis.org

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 it, try to avoid discussing it, or watch TV.

Then, I work to not catastrophize the news. I've been given no less than 2 terminal diagnoses (complete with the number of days I had to live) and I've blown past both of those "expiration dates." So trying to figure out where a diagnosis is going to take me is rarely useful.

I believe my thoughts have weight and I can make things worse by buying into the worst things I've heard or read.

Certainly Kubler-Ross's stages of grief come into play as I work my way towards acceptance.

I'm grappling with the implications of my newest hard diagnosis.

If you are dealing with a hard diagnosis -- you are not alone.

Please reach out. Connect. There are lots of communities to connect with or connect with me. Don't do this alone.

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 on this shit seems like such a waste!

So, I'm armouring up and getting ready to go fight with my doctor about the things that I need since he doesn't seem to be prioritising those.

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 subscribers -- thank you for participating! Please consider subscribing and/or leaving a comment or question.

Why do I call this Chronic Wellness?

Managing life-altering chronic illnesses that have transformed my life and future, I struggle with depression, I struggle with how and whether to treat my diseases. These conditions and questions can wreck us in all kinds of ways.

Here's the story of the genesis of this video blog and podcast.

When our bodies are broken can we find ways for our spirits to remain whole?

How can I remind myself and you that we are enough?

How do we find buoyancy?

Today's doctors' appointments were to scan my veins to see whether the blood clots are still there since my surgery in August. It is likely that I am not on the right blood thinner and the most appropriate one will come with difficult trade offs. So I'm working again to find my center, not believe everything I think, and make time to find space for a few things I enjoy. Today that meant getting on some glam and coming to talk to you.

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 remembering that I am enough and I am not this illness.

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 of this pandemic, there will be friction as people have different ideas about what is "safe."

How do I find balance between caution and living?

What feels "safe enough" for you?

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, will this pandemic be over?