Intro: Rare Disease, and Serving as My Own Test Subject

Cumulus

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Hi,

I'm in my 30's, and the diagnosis came in my late 20's: a rare condition affecting somewhere between 1-2 in 100,000 people, though in certain provinces that figure climbs to 27 in 100,000. I'd be shocked if the name rings any bells — it's long and honestly kind of ridiculous. Untreated, mortality sits at 50%, and since it's paraneoplastic, the first couple of years after diagnosis meant being skewered, prodded, imaged, and made to swallow all sorts of nasty things... the whole menu. Luckily, nothing has turned up so far. That said, I've always been a sickly sort. The worst of it hit during my teens, then things eased up somewhat; even so, metabolic problems have dogged me since adolescence. During lockdown I dropped 100+ lbs entirely on my own, driven by heartbreak. You have any idea how much suffering it takes to push yourself to shed that much weight in a single summer? I was locked in. I'd resolved to rebuild my life, too. Went back to school (total keener, A+ grades), met someone new, moved into a fresh apartment. I was in incredible shape, my hobbies were thriving, life looked delicious. Honestly... the world felt like it was mine for the taking.

Then one day a rash appeared on my face. Out of nowhere I was growing weaker. And weaker. The rash crept across my eyes, up to my forehead, onto my hands. I spent years ping-ponging between doctors. School had to be paused. No job prospects. Eventually we figured out what was going on — after my partner carried me into emerg because I couldn't even walk. Anyway, skipping ahead past a pile of medical trauma: I now get infusions twice a month, a tiny chemo dose, and following what my partner calls a "heroic" round of steroids, I'm basically half dead and the medical system seems content to leave it there.

I am not.

Being perpetually exhausted and in pain is not something I accept. I've been going at the gym HARD, solo, trying to claw my way back to a "normal" baseline. Ever been unable to open a bottle cap on your own? There's nothing quite like losing bodily autonomy plus the threat of oblivion to make you dig deeper than ever. My diet is as healthy as it has ever been — absurdly healthy, honestly. I've cycled through different diets aiming to bring inflammation down and shed that awful steroid weight. Hard work is nothing new to me, but it seems my body has something seriously wrong with it — shocking no one. So I began seriously researching GLPs. Got my hands on some free pens. Two months in now. The change has been enormous. The rashes haven't gone away, but the fatigue is nowhere near as crushing. Previously everything had to be planned out; gym, then straight home with zero detours, or I'd be stuck in bed the following day. Now? It's wild, I'm thrilled. I knocked out 8 different things around the house. Inflammation overall appears reduced. The brain fog is lifting, slowly, slooowwly. I think a future might actually exist for me. Maybe I won't be a burden anymore. And... that brings me here. I want to find out how far peptides can take me. What else is there, honestly? And who knows — maybe we pick up a thing or two together along the way.
 
Glad you made it to the forum, and it's great that you've landed on something that helps. Figuring out health issues mostly on your own is a tough road.
 
I get where you're coming from—my own circumstances are pretty close: an uncommon condition (not deadly, though it restricts me significantly), doctors offering almost nothing, and hunting for other options is what brought me to peptides. I hope you come across a few that do you some good!
 
Makoto said:

I get where you're coming from—my own circumstances are pretty close: an uncommon condition (not deadly, though it restricts me significantly), doctors offering almost nothing, and hunting for other options is what brought me to peptides. I hope you come across a few that do you some good!
A skilled doctor can be absolutely wonderful. But when a practitioner is burned out, stretched too thin, lacking empathy, or cruel (and plenty are..), the fallout is enormous and sticks around for years.

Learning that you're dealing with something comparable truly saddens me. May we both eventually catch a break, through peptides, something else, or a mix of both. My own small bright spot at the moment: the indeterminate heirloom tomatoes I've got growing on my windowsill. I'm ridiculously thrilled about them. Slightly unrelated, but this month I've become completely captivated by fruit as a topic, lol. Currently on book number 12; covering everything from history and horticulture to weather and biomes. Really intriguing.

I'd love to hear from you now and then, Makoto!
 
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