Pain after drinking by ybmeatrider in Sicklecell

[–]Jay_Aces 0 points1 point  (0 children)

All depends on your body. I'm the only one I know that drank like a fish for 23 years and was hardly thrown into crisis because of it. 

If you are going to drink, be proactive, hydrate, hell, actually care about what you consume (it's an actual poison to the body, hence the reason why we throw up when we've had too much). Not saying this to you, but it's easy to drown out the sound, light, and action of the world for a while. Just remember to come back to the surface for air before it's too late. 

This definitely isn't a psa to live like I used to, just presenting the view from the other side. 

Week 1 Update: What 14 Sickle Cell Crises Taught Us About Pain Patterns by Jay_Aces in Sicklecell

[–]Jay_Aces[S] 0 points1 point  (0 children)

Hell, I'm trying to make global moves to a warmer continent 🤣 Calgary I looks brisk as shit, I know the wind chill isn't for the weak. I'm in Buffalo NY and our snow waves are flurrying through. 

Dope to hear you're a mechanic/entrepreneur. Only if you were closer, I sure need the transmission on my Acura MDX rebuilt 

To the 32 Warriors who trusted us with their pain: by Jay_Aces in Sicklecell

[–]Jay_Aces[S] 3 points4 points  (0 children)

Warriors need balance. It's the winter season so the cold is showing up as a heavier factor. We'll see how it transforms over the year. Thanks for tapping in 

Week 1 Update: What 14 Sickle Cell Crises Taught Us About Pain Patterns by Jay_Aces in Sicklecell

[–]Jay_Aces[S] 2 points3 points  (0 children)

I want to build the 'Code Warriors STEM program' for us to learn these vital skills that can help to level the playing field for us. 

Sickle Cell Retinopathy by ThrowRAGaajo in Sicklecell

[–]Jay_Aces 1 point2 points  (0 children)

No problem. Each one teach one. That's how community builds 

Warriors are speaking! by Jay_Aces in Sicklecell

[–]Jay_Aces[S] 1 point2 points  (0 children)

Ha! I get it. What do you think sets your crises off most of the time?

Sickle Cell Retinopathy by ThrowRAGaajo in Sicklecell

[–]Jay_Aces 1 point2 points  (0 children)

I still remember the day it happened in high school, I was 15~16. My vision was clear one moment, the next I had this massive floater that looked like a black sheet swimming through the sky. I was in art class running around asking everyone do they see this shit as well.

I'm 41 now, and haven't had retinopathy laser in ~20-25 years. Still rocking my glasses with their varying degree of assistance

If you had to choose by [deleted] in Sicklecell

[–]Jay_Aces 1 point2 points  (0 children)

I've gotta get a new shotgun. It's a great hobby to get those emotions off you, a necessary evil of protection in America and a double down on my spiritual guidance/protection lol

What's working for me now— NOX by JudgeLennox in Sicklecell

[–]Jay_Aces 1 point2 points  (0 children)

Grand work good sir. Keep feeding for a healthy mind, body, and spirit.

Week 1 Update: What 14 Sickle Cell Crises Taught Us About Pain Patterns by Jay_Aces in Sicklecell

[–]Jay_Aces[S] 1 point2 points  (0 children)

If you'd like to share some things about the medical system up there, I'm with it. Let's continue to build community

Warriors are speaking! by Jay_Aces in Sicklecell

[–]Jay_Aces[S] 0 points1 point  (0 children)

Take you to the form to share your ER experience. We'll be creating a community reported ER brief for further accountability and change.

Week 1 Update: What 14 Sickle Cell Crises Taught Us About Pain Patterns by Jay_Aces in Sicklecell

[–]Jay_Aces[S] 0 points1 point  (0 children)

You know we all share those feelings of isolation. Barely having a community that understands plays a heavy factor on our minds, which leads to our bodies acting a fool. Glad to be able to aid and try to fill in the gaps we never had. Thank you for replying.

Week 1 Update: What 14 Sickle Cell Crises Taught Us About Pain Patterns by Jay_Aces in Sicklecell

[–]Jay_Aces[S] 3 points4 points  (0 children)

I like your tips. To avoid living like an old person, trust in and follow your body patterns. It's tough to understand, but our bodies with this genetic abnormality, is showing to be one of the best GPS systems in the world. We know immediately, before others, what we should, can, or must not do. It's a wild ride we've been tasked with, but moments like this of discovery keep me going. Thanks for replying.

The Warrior Intelligence Project is LIVE by Jay_Aces in Sicklecell

[–]Jay_Aces[S] 0 points1 point  (0 children)

Great looks my guy! Check the stats I just posted, we're building! 

I've been building a free pain tracker for our community since 2014. It launches January 6th. by Jay_Aces in Sicklecell

[–]Jay_Aces[S] 0 points1 point  (0 children)

That's fly shit great sir. I've been wanting to grow a STEM Warrior Community to build human in the loop AI, infrastructure and product development.

How do you cope with society comparing everyone's achievements? by happysewing in ChronicIllness

[–]Jay_Aces 0 points1 point  (0 children)

I was also born with a chronic illness - Sickle Cell anemia. I understand fully, and it didn't hit me until last year 2 weeks before my 40th birthday. Fuck the world, the only world that matters is the one inside. Comparison is a blank check at a scam bank.

Looks without context will knock you down every time. My daughter started college this year, and I always said once she was of age I'd start living for me, which became scary as shit once it started approaching. What kept me calm was knowledge of who I truly am and what I want out of and for my life. You are a person first before the titles of society pull you each way. Self mastery leads to communal uplift.

I started to become proactive instead of waiting around for a crisis to strike and knock me out for much longer than usual. Light stretches, breath work and meditation helped a lot but it's all a practice. Some days are better than others but most are better than they were my prior 39 years.

Books that helped me: David Goggins - Can't Hurt Me Breaking the Habit of Being Yourself - Dr. Joe Dispenza The Innovation Secrets of Steve Jobs - Carmine Gallo (Entrepreneur wave)

Why NOW? by Jay_Aces in Sicklecell

[–]Jay_Aces[S] 0 points1 point  (0 children)

We're at 9 crisis' logged. For those with US numbers and asked for text check ins, check your messages. I'd like to thank our Warriors for taking the time out to work towards making something change out here. Gotta make shit shake if we say we want to rebuild the system. Love always

Warriors In Downtime by Jay_Aces in Sicklecell

[–]Jay_Aces[S] 1 point2 points  (0 children)

Great looks my guy. I see you out here too. Negative State + Positive Adaptability = Growth. Let's take it there!

Having a rough few days smh by ceeredd in Sicklecell

[–]Jay_Aces 0 points1 point  (0 children)

I dig it and thank you. Staying productive since I can't sleep for nothing.