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Let's Keep it Real

With the creation of Chronically Emily, I vowed to write about living with chronic illness without shame or guilt, and with honesty, vulnerability and authenticity. This is HARD y'all.

What I need to say today is that I am not okay.

Deep breath. That's challenging to write. Especially in the context of the amount of suffering amongst those I love and the collective suffering of the world right now.

My 45th birthday in October of 2020 was a huge high--I even got an e-bike that I named Birdie--and could go for little rides. By the end of October of 2020 I started to notice a decline in my health. Dr. Rowe and I thought it would pass--relapses have been shorter and less severe in recent years. Despite lots of Zoom time, PT and other interventions, we've been unable to get my health back on track.

Currently, I'm on a three month high-dose treatment of anti-fungals. For now, I won't go into the details of this or why I'm on it. What I will say is that it is kicking my butt, knocking me down for the count. The medication lowers blood pressure in a small percentage of people (that would be me, of course!), so any standing or sitting time is extremely difficult and limited. In general, I have extreme fatigue, brain fog, dizzy spells, and weakness. I feel horrible every moment of the day--which could be from the medication itself or from die-off.

I'm also in the midst of a trial of both soft and hard collars to see if cervical instability and hyper mobility are largely contributing to my symptoms.

I've got a new and amazing counselor who is changing my life, but depression remains more present of late than I would like. (I'm not someone who is thriving during the pandemic!) And, I'm learning a LOT about how unhealthy my patterns of functioning in an ableist world are.

Every day is a huge push to try to get any basics done. I am relying more on my mom than I had previously had to, which stinks. Somehow, she always gracefully picks up the slack, but that is getting more difficult for her as well.

I know it's easy to tell me to rest, rest, rest. But, life keeps moving and piles keeping forming and things do have to get done. Appointments are constant. So, I push through as much as I can and try to get some rest. Just getting to my appointments has become too much.

After our return from a two day trip to PT, I plan to block out a week to limit appointments, errands, etc. to the very bare minimum I need to survive and try my darnedest to rest. I think this is the only way to really help my body heal from the yeast overgrowth and the treatment for it. My mental health needs it too.

I wanted to use this space to take a moment to update on my health, and let folks know that as much as I want to socialize or connect more or send holiday cards or birthday cards, it's just not happening. If I don't tell you that things are bad, how would you know? You might just assume I've been enjoying the improved health I've had for the past few years.

Instead of a smiling photo of me out and about or in my cute clothes, I'll posts a couple of time spent in PJs, lying down and snuggling with Tovah. This is more of the reality right now--except that moments of feeling peace have been rare.

As always, thank you for your constant love and support. Sending love, hugs and more love from my recliner!


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