Hi friends,

My medical journey continues (read part 1 here), and I am back to ask for your help. Your gifts from last year have brought me this far into the new year with greater peace of mind and less stress. I am hoping you can help me move forward with the same ease.

2025 was a hard year. I learned that my original POTS* doctors, who were recommended as some of the best in the country, did not live up to that reputation. They overfocused on some things (including repeat tests that made me feel awful) and missed following up on others, like a referral to see a Neuro-Muscular specialist.

I've now found a new doctor and NP who are taking a different approach and catching the things that fell through the cracks. I'm also working on getting in with a Neuro-Muscular specialist. But that process requires repeated tests and scheduling an appointment 6 months out. The hope is that this specialist will provide a diagnosis for some of my symptoms, which do not fit into POTS or hEDS*.

I also was feeling worse for most of the year. Eventually, I was diagnosed with Hashimoto's, an autoimmune form of hypothyroidism. It took months to find the right medication dosage. Once my thyroid levels were restored, then my other meds for heart rate and BP had to be recalibrated, a process which led to discovering one of the meds was triggering my MCAS*. That was a (not so) fun flare-up over Christmas.

I also added low-sodium electrolytes to the mix, and they've been hugely helpful. Most POTS patients are told to take large daily doses of salt, but because my BP was too high during testing, I was advised against this. That "threw the baby out with the bath water" in terms of getting electrolytes, until I found this low-sodium option.

Each week, I continue to go to AquaPT twice and get allergy shots. PT is helping me build up more strength. Being in the water keeps my lipedema* in check. The shots are definitely helping with allergies to the outdoors, animals, and dust mites. I'm also seeing my mental health therapist once a month or more if needed. I try to get in a social visit once a week. But then I hit my limit of energy. I still can't work.

For more mental support, I've started a meditation course for those with chronic illness and pain. In the course, they've asked us to name our conditions in an effort to get some separation from them: "Garfield" the cat feels like a good fit right now. He at least brings some humor.

After all of this, I do feel more like myself mentally and back where I was, physically, in the winter of 2024. It's hard to write that and realize the last year was a struggle just to get back to a poor baseline. I'm still left with severe limitations on standing and walking. Even just sitting, I need a break to lie down after about 2 hours. But, as I remind myself often, things are moving in the right direction. Getting more clarity this year on a Neuro-Muscular diagnosis can only help by getting more targeted treatments.

I continue to try to find in-network providers, but the reality is that some of the most competent providers for these "rare" conditions are out-of-network.

Any gift you give will help me get the competent care I need. I'm blessed to have reduced disability income that covers my monthly expenses and health insurance, but I'm still left with a reset deductible and out-of-pocket maximum. Thank you for reading and considering how you can help. Prayers are just as welcome as financial gifts.

Much love,

Jess

*Chronic Illness Definitions:

POTS = Postural Orthostatic Tachycardia Syndrome, a type of Dysautonomia in which automatic body functions go haywire

MCAS = Mast Cell Activation Syndrome, aka: overloaded allergy system

hEDS = Hypermobile Ehlers-Danlos Syndrome, a difficulty processing collagen that affects all body systems

Lipedema = a fat and connective tissue disorder that causes swelling from retained lymph fluid