Apples and Oranges

One thing that is very real and very frustrating in the world of chronic illness: Misdiagnosis. The more rare your disease and more complex your medical case, the more likely that you will be misdiagnosed before someone gives you the “real answer.” The truth is that diagnosing patients is complex and, frankly, it’s really hard. Most medical tests don’t lead to a single diagnosis, but rather suggest a list of possible answers that must then be compared to the patient’s list of symptoms. And the fact of the matter is that most of us in the chronic illness community have struggled with this reality.

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The Power of Music

Music is a core part of all of humanity. Every culture across the globe has some kind of music. All of humanity: we sing and we dance and we make musical instruments. We do this by ourselves. We do this as groups. We do this in times of celebration. We do this in times of stress. We have been making music for as long as we have been documenting history and evidence suggests that we have been doing the making of music before we have been writing. So this suggests that there’s something really essential, profound and powerful about music, which is why so many people research it, because we ask this question of “why music?” What is it about music, that’s so important that every human being on the planet, engages with music, on some level? Whether you are a performer or you’re just somebody who is listening. Whether you’re singing in the shower or tapping on the table to a song in your head. We all engage in the creation and listening and sharing of music. Why is that?

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Guilt

Hi, my zebras in spoonies! Thanks for coming and visiting me. I’m glad that you’re spending your time with me.

Today I’m going to be talking about guilt, because the reality is that the majority of people who have chronic illness experience guilt, lots of flavors of guilt, but we feel guilt. It’s kind of an interesting phenomenon when you think about the fact that nobody chooses to have a chronic illness and yet we feel guilty about it. I just wanted to explore what we feel guilty about and what we can do about it.

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The Role of the ED in Managing Chronic Illness

Hello, my zebras and spoonies How are you today, I’m super glad that you’re here hanging out with me. So today I want to talk about the ED: its role and relationship with those of us that have chronic illness.

I frequently hear people talking about their experiences in the ED. There is a distinct dissatisfaction amongst the chronic illness community in the way that the ED handles our cases. I wanted to talk about some of the reasons that this happens, and maybe talk about what we as patients could be doing to maybe improve that relationship and to maybe avoid the ED.

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042621-1446

Broken, scattered pieces

Laying strewn across the floor

Something missing and lost forever

I cannot no longer see my future

Or the person I was becoming

Now, I’m undone and something else

I am this diagnosis

This label that owns me

Stealing everything I imagined I’d become

And rewriting me without my consent

As my body cracks and crumbles

My hope turns to dust

Leaving me here to stare at my mortality in the mirror

042621-1451

It could be worse

But I wish it was something better

Burning pain

Branding me, scarring me, breaking me

In all the places you cannot see

I walk through the crowd

A spector of suffering unrecognized

Looking the same as those around me

And I wonder if they feel the same

Bitter, iron bars caging around me

Biting down into my bones

Seeping into the fundamental programming

Forever altering who I am

I clutch upon the thing with feathers

That perches precariously in my soul

I wish I could hear it sing

Letting the little bird go

I watch it fly away, fly away

And with a fragile voice

Begin to sing

Update 090121

I have been having a rough time over the past week. The heat has been making my POTS flare up. Still had to work a crazy schedule even though I was feeling like crap and was super tired. Work has been taking all my spoons. On my days off I’ve been doing the marathon sleep thing in hopes of generating enough spoons for the next round of work shifts. I’m not sure if the nausea or the fatigue has been the bigger challenge this week. Been a struggle to get anything down and then keeping it down has been a gamble. Fatigue is a challenge because there isn’t any way to get any more energy. There just isn’t any go and that’s all there is to that. So, yeah. It’s been a rough week.

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