selfadvocacy

Living with a complex diagnostic profile—navigating the profound sleep inertia of Idiopathic Hypersomnia, the systemic pain of fibromyalgia, and active recovery from a severe endocrine crisis—means my body rarely cooperates with a traditional schedule. Alarms get silenced entirely offline, and mornings can start in a deficit before my feet even touch the floor.
Today started exactly like that. I woke up hours behind schedule, dealing with heavy physical exhaustion and an immediate, intense autonomic plumbing spasm that required an urgent, high-stakes cleanup.
In the past, a start like that would have triggered an avalanche of frustration and anxiety. But today, I chose to look at my body through a lens of absolute mechanical neutrality. I didn't panic. I relied on the high-performance adaptive containment gear I’ve learned to treat like an essential trade tool, and it did 100% of its job behind the scenes. My skin was protected, my clothes stayed clean, and my privacy remained intact.
The real test came immediately afterward. When I touched base with my project manager, I learned he is currently on-site running an active fever with a confirmed contagious exposure. For my fragile, recovering system, a viral infection right now is something I cannot afford—both physically and financially.
Instead of letting the circumstances run over me, I used my independent contractor status to engineer a compromise. I adjusted my gear to a lighter, high-stealth layout to maximize my physical comfort, put on my reusable mask, and mapped out a high-focus sprint. I am going onto that site to knock out my specific technical tasks as quickly as possible, enforcing a strict 10-foot physical distance buffer from the illness, and then pivoting to tomorrow's jobsite ahead of schedule.
I am logging my hours, securing my paycheck, and keeping my health 100% insulated from a hazardous environment.
My logistics are automated, my support systems are in place, and I am managing a volatile physical day with elite-level clarity. Every small boundary is a massive win.
#selfadvocacy #HashimotosThyroiditis #IdiopathicHypersomnia #ChronicIllness #neurodivergent #trades #pelvichealth #bowelincontinence #IndependentLiving #judithsspecialpanties
#Fibromyalgia #Masking #Work #ChronicFatigue

I finally got my official June ER lab records today, and seeing the raw machine data on the screen completely rewrote my understanding of my own body.
For months, I thought my acute collapse this past summer was bad. But the actual numbers show a level of systemic failure that leaves me stunned I was even awake. My Thyroid Stimulating Hormone (TSH) didn’t just spike—it reached an astronomical 478 uIU/mL (with a normal range being 0.4 to 4.0). My Free T4 was critically low at 0.11 ng/dL, meaning my bloodstream was carrying virtually zero circulating thyroid hormone.
To have your metabolic engine completely bottom out like that is terrifying. It means my cells were operating in a state of severe hibernation. It completely validates every single scary physical breakdown I’ve endured since then.
Without thyroid hormone, my peripheral nerves lost their signaling power, causing debilitating left-arm numbness that mimicked a stroke. My gastrointestinal smooth muscles were literally paralyzed, causing profound slow-transit constipation that alternated with sudden, high-volume overflow leaks. My autonomic nervous system completely lost control of my bladder and bowel sphincter lines.
Because adult incontinence carries such intense societal shame, it’s a relief to have the hard machine data prove it wasn't a personal failure or a lack of willpower—it was a literal, mechanical consequence of a near-coma level endocrine emergency.
My primary care clinic appointment today was a mixed bag. The doctor was busy, distracted, and nonchalantly asked if my symptoms were "all in my head" before slapping a generic "depression" label on my chart and dipping out. She had no idea my system was surviving on zero hormone just three months ago because the hospital records never forwarded.
But I pushed back, I spoke up, and I held my ground. My current TSH is down near 4.5. We are adjusting my Levothyroxine, adding a twice-daily active T3 medication (Liothyronine) to jumpstart my cells, and trying a non-stimulant ADHD med (Qelbree) to help anchor my severe brain fog and executive dysfunction.
The best news is I successfully unlocked an affordable $10-per-visit care pipeline to Nashville General Hospital, bypassing the clinic gatekeepers to get direct access to the experts who can actually help me build my state adult disability case: an Endocrinologist, a Psychologist, a Neurologist, and a Physical Therapist.
This recovery process is going to move at a much slower, more glacial pace than I originally anticipated. My chronic fatigue, joint pain, migraines, and interoception gaps still decimate my daily spoons, and my independent living landscape is incredibly high-friction. But today, I hold the absolute laboratory truth of my condition in my hands. My symptoms are real, my history is verified, and I am moving forward one mechanical step at a time.
#IdiopathicHypersomnia #HashimotosThyroiditis #NeurogenicBladder #adultautism #ADHD #AutismSpectrumDisorder #ChronicFatigue #Incontinence #selfadvocacy #ChronicPain
#MightyTogether #Nashville #Migraine #Hope

"I have been many different people in this life, but my favorite is the one beneath the mask"

- ME 💜

#Unmasked #happy #authenticity #BeYourself #selfadvocacy #happyplace #FollowYourPassion #growthmindset #neurodivergent #nd #Autistic #ADHD #BFRB #TOCD #BeneathTheMask #navigatingneurodivergence

Optic neuritis, extreme nerve sensitivity, numbness, wandering eye, numb butt (really) and all kinds of doctors and testing – Spencer is such an authentic voice talking about his own zigzag journey with MS. www.youtube.com/watch

Every #myMSstory is powerful. What's yours?

#multiplesclerosis #selfadvocacy #newlydiagnosed #MightyTogether #ChronicIllness #Disabilities #Disability #Support

... making it even more important to be your own best advocate."

Bumping Jenna Green's column on The Mighty called How I Stepped up to the Plate As the Manager of My Health:

themighty.com/2022/05/how-i-stepped-up-to-the-plate-as-the-m...

Jenna says, Don’t be afraid to advocate for yourself and your wishes to find a treatment plan that fits with your life. You call the shots, you manage the team of healthcare professionals that respects and serves you best. She tried several neurologists before deciding on the bestvfor her. She says she gains confidence for her appointments by staying informed with trusted sources like MS Society and MS Focus.

I wish I'd read Jenna when I was newly diagnosed. It took me a lot of years.

#multiplesclerosis #selfadvocacy #newlydiagnosed #MightyTogether #ChronicIllness #Disabilities #Caregiving #Disability #Support

For World IBD Day, listen to this panel of IBD experts and advocates at 11am PT / 2pm ET: bit.ly/3bnwcJg

After, head over to an interactive webinar that teaches you new tools for self-advocacy at 2pm PT / 5pm ET: bit.ly/3eKiAda

End the night with our weekly support group for spoonies starting at 4:30pm PT / 7:30pm ET: bit.ly/3u2MVc5

#MightyEvents #MentalHealth #WorldIBDDay #InflammatoryBowelDiseaseIBD #UlcerativeColitis #CrohnsDisease #ChronicIllness #selfadvocacy #Spoonie

For the record: no, I don't actually think I know more than an NP. And yes I believe that medications can and do help people and that there is NO SHAME AT ALL in taking your meds. I believe that there are medications that work for different people, with different results. I do know more about my medical history and experience with medications and their efficacy for my own self though and this is a list of meds I have been on that did NOT work for me, and I really dont want to re-start the trial and error "lets see how THIS makes you feel" during a pandemic while I'm more level than usual.
#Medication #selfadvocacy #AnxietyDisorders