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I’m raising awareness on chronic illness and coping with music. I’m a child sexual abuse survivor, with Lyme, Ehrlichiosis and embedded uti, and IC

Another SNEAK PEAK at the very first episode of @chronic.but.iconic.crew podcast episode!

In this episode we talk a bit about Rebecca Bloom’s Book, @whenwomengetsick “When Women Get Sick” but also answer a listener’s question. @irisgray336 called into the Hotline free podcast hotline and left us a message! She asked “Amanda, with all your diagnosed conditions that are coming up… how do you stay positive? And what do you do during the hard days?” 💜

Short answer: I am NOT positive all the time. Yes, I am bubbly but I make space for the good, bad, ugly, and uglier 😆. 💜. I also feature a quick oracle deck card pull from my gorgeous Mano deck I won last month from @chaoticcrystalchickco so check them out!

Want to call into the podcast or text me? Say hi 👋 . Tell me about you and your journey. Try to keep each voicemail under 60 seconds but you can call in multiple times! I also can make you anonymous or disguise your voice and name if you desire! You may also DM me a voice note or a message that may just be featured in our next podcast episode on November 7th at 8pm Central!

Podcast hotline phone number: to leave Amanda a message: you can ask a question, leave a comment, share a favorite quote, etc!

+13143470736 📱

Also for this feature clip, I sped up some areas so I could be under 3 minutes for reach 😆. My normal voice is in the full episode on YouTube.

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Welcome to the Chronic But Iconic Podcast! @chronic.but.iconic.crew

First episode we’ll be posted on the #ChronicButIconicCrewPodcast Instagram bio on October 7th 8pm CDT.

I also have a special podcast phone line where you can leave me a message! Say hi, ask me a question, tell me a short bit about your chronic health journey if you desire. The information is in the reel!

Iris, who follows me on Instagram and is following the podcast as well called in last week. Here is her question, “Amanda, how do you stay so positive with chronic illness and all you the diagnosed conditions that just keep coming?”

My answer: The full answer in the reel! 😉 However, I mention finding my people and my book club, @chronic.illness.crew.bookclub is a BIG part of how I keep finding the momentum in my life. Is it work? Yes but it keeps me going even on the bad days.

Thanks @irisgray336 for calling in!!

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happyDAY Spirit🙏
if I had to...
I would travel by plane
to see you
once I'm up in the air
I would marvel
at the breathtaking views
if I had to...
I would board a train
to Kalamazoo
but I'd depart at every station
to soak in their attitude
I'd drive my car
around winding curves
I'd ride my bike
up narrow roads
I'd walk a million miles or more
just to feel your grace once more
bigHUGS🤗

#TravelByPlane #TrainToKalamazoo #WindingCurves #WalkAMillionMiles #JustToFeelYourGrace #DevotionWithoutDistance #SacredPilgrimage #SovereignSanctuary #MindsetMatters #DailyInspiration #SpiritualAwakening #Heartistry #bigHUGS #happyDAYSpirit #PoetryCommunity #WritersOfInstagram

"Whithersoever thou goest, I will go; and where thou lodgest, I will lodge. The spirit that is bound in truth and affection knows no distance, for every path it walks is illuminated by the light of its devotion." Ruth 1:16

"The seeker of truth does not count the leagues or fear the long road, for he knows that every step taken with a pure heart is a step toward the supreme sanctuary. Whether he flies on the wings of the wind or walks with weary feet, the grace he seeks moves to meet him halfway." The Bhagavad Gita – Chapter 12, Verse 8

"Good company in a journey makes the way seem shorter. He who travels with a heart full of love finds a sanctuary at every train station, a lesson in every winding road, and endless strength in every footstep. For the true destination is not merely a place on a map, but the radiant grace shared between souls." Izaak Walton – The Compleat Angler

"When love and grace are the destination, the mode of travel doesn't matter...the movement itself becomes a holy meditation." happyDAY_bigHUGS🤗

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$This is why chronic illness patients are hesitant to go to the doctor. 😂 😭 I recently saw an Allergist/Immunologist for immune dysfunction concerns and the encounter got slightly derailed by the provider’s unsolicited opinion on my meds and my confirmed Mast Cell Activation diagnosis. I am a fraternal #triplet and while my sisters are fairly healthy, I have many concerns. I was deemed healthy at birth while weighing under 5 pounds (and the smallest) but growing up I always got sick severely and often. It is not the direct cause but a puzzle piece. Certain life events worsened my health like Physical Trauma and Covid. “I am not a specialist but I do not think you qualify for Mcas.” Okay… but I was not asking for your opinion..I was just going through my CONFIRMED history 💀. My symptoms have been maybe a little more subtle like flushing, evening hives, heat intolerance, GI Disturbances ( I did not get through all of the symptoms since she was not passing my vibe check.) and yes I also have POTS (she didn’t seem to question that) and Hypermobility. Yes, my typical labs were fairly normal but my symptoms and clinical assessment say otherwise. I am also a major trauma survivor. Hit by a car while walking and sustained ankle and leg fractures. Chronic pain. Never was on long term prescription until that and COVID. Patients, stand your ground!! This is why I run my free virtual book club @chronic.illness.crew.bookclub via Zoom 2 Saturdays a month at 12 pm CT. We are reading Medical Gaslighting by @ilana_jacqueline. Next meet up is July 11th. We summarize live in the Zoom so no worries if you are low energy 🥄 to read. Grab your own copy though if you do want to read! Our August & September read is The Place Between Our Pains by @kjramseywrites It is a newer release but good news! Libraries are starting to add it to @libby.app (you can also request that your library gets a copy but no guarantee). #medicalgaslighting #fypシ❤️💞❤️ #chronicillness #mastcellactivationsyndrome$

$POV you have complex chronic illness and have been working hard to get a particular diagnosis… For me, I had some Small Fiber neuropathy symptoms back in 2023 when my Glucose was out of control likely to having double covid/strep a couple months prior and having to be on a steroid during that time to break the fevers. I was given Paxlovid and it gave me a swollen tongue. I caught covid from my family on a hiking trip but was the only one who developed strep too and was sick for over a month while they were okay in a week. But the year before I also had exposure to severe mold and have chronic stress. We lost our rental home to a 5 ft basement flood in July 2022. Also was hit by a car as a pedestrian in Dec 2019…Closed fracture of right ankle and right tib fib. Had to have double tight rope repair on right ankle in 2020 and a bone spur removal on 2023. Still have horrible chronic leg and ankle pain. I can walk but need compression and braces most days. I use mobility aids as needed. Since Type 2 diabetes is in my chart, 📈 there is this clinical assumption that it is the cause of my SFN. It is not that simple. My endocrinologist also says I am technically not diabetic since my A1C is at 5.2. I do have Insulin Resistance. I have a complex history so I typed it out and sent it off to my neurologist in hopes we can try a treatment geared toward autoimmune health. I have nothing but respect for my neuro. She encouraged me to get the skin biopsy since my EMG test was fairly normal. Spoiler… a diagnosis is just part of the journey. Often times… an attainable treatment option is not always presented. Has anyone experienced this and what is your plan? I see you and believe you!! #smallfiberneuropathy #chronicillness #diagnosis notmedicaladvice$

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Chronic Illness is rude.
It is selfish and unfair.

#Iseeyou #chronicillness #chronicpain #viral

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Iris Gray- Iris’s Music

@irisgray336