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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!


Emily

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I am thinking about you today and hoping and praying that you are doing a little bit better and have enough energy to sit up with your Mom and your sweet puppies and watch a movie and eat some popcorn. Sending you a big hug and lots of love, Barb

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Dear Emily,

Thank you so much for finding the courage and strength to write so candidly about what you are going through.

When you are feeling miserable for the help that you have to seek from your Mom or others, perhaps you should remind yourself that even in this state of health, you are helping others by sharing your struggles. At the very least, you are making us stop from being completely engulfed by our own challenges and hear another voice. Another voice saying she is also struggling today. Your struggles maybe different than ours, but you are teaching us to say that “it is okay to say that I am not doing okay”. You are reassuring us tha…

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Dear Emily,

I am so sorry that you are going through such a difficulty time right now. I am here for you if you need a listening ear or another Mom to talk to. I do understand the extreme ups and downs of what so many of the medical conditions are capable of doing that Dr Rowe treats. I can only begin to imagine how you are feeling. I will be praying that this time that you are feeling so low in energy and having the brain fog among other symptoms will pass quickly over the next weeks.


You have given so much of your time, energy and endurance to others over the past few months and years and it…


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