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 isolation.

My grief is leading me to acknowledge my own fears about the life I don't get to life, the legacy I won't leave, the burden I am.

We suffer so privately. I love you and am sorry for the pain you are in -- physically and emotionally.

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 that being inactive and unable to participate leaves one feeling sidelined.

The inability to have fires at our campground was a boon for me but a bust for everyone else.

It was disconnecting to feel like I was having such a profoundly different experience than everyone else.

How do you participate in groups where you are not well known?

When do you choose to step up and advocate or not?

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 linen sheets. My wife was unimpressed with the linen. However, we found a compromise.

Bamboo sheets are the softest by far, but the linen does live up to its promises of keeping me warm on a cool night and cool on a warm night.

How do we find workable solutions that honor everyone involved?

What do you sleep on?

What improves your sleep?

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 to decide between a life-saving medication and potentially rising my life in order to receive it.

I'm feeling sad and despondent. No option before me feels like a good option.

Any suggestions?

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 someone dies?

The details of death are complex; with some advance planning we can help our loved ones carry out our wishes to the best of their ability.

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 sports watch.

The company (getmyid.com) that sells these silicone sleeves, retails condition-specific sleeves as well as a sleeve with all of your medical information on it available with a QR code.

What are you doing about medical jewelry?

Do you wear it all the time?

Until we're together again - SLAY!

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 another way by Elizabeth Gilbert, "the opposite of your most stressful thought is the way to enlightenment."

How do I gravitate towards emotional buoyancy?

I can just as easily lie to myself as tell myself the truth. It is worth taking the time to tell myself the truth. The freedom that comes with telling myself the truth is so much greater than the prison of lies I could be building if I weren't challenging these stressful thoughts.

It is painful and isolating to be sick.

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 queer makes it easier to trade in some of my perceived heterosexual privilege.

I am proud. I don't know if I would have picked this path but I wouldn't trade it for anything now.

What identity are you proud of?

Until no one cares who I love, it is something we need to discuss.

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 committed to my gratitude as I am to my self pity?"

Not always, but today - this top was a thread of connection to something bigger and brighter than what I was feeling on my own.

What lifts your heart?

Are you as committed to it today as to your own self-pity?

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 independent, rather than interdependent. The idea that what I do would not impact you and everything else on this planet, is limited in ways that are representative of the colonizer.

How are my actions in line with my values in line on this?

What are your thoughts about community and health?