Sickle Cell Warriors


 Breaking News

363 days….

Where do I begin?

I’m living in Santa Barbara, the site where the Jesusita fires were burning fiercely a mere 2 days ago. Thankfully the fires have now been contained. It started last Monday, and by Thursday, the fires were raging out the control, the city evacuated. Heads up, if you ever have sickle cell and you are where there is smokey fires…GET THE HELL OUT.

I didn’t, mainly because the hospital wasn’t evacuated and I had to work. I came into work on Thursday soldiering in for my coworkers that couldn’t make it in. The hospital ventilation system is old, and according to hospital regulations, the vents must remain on to circulate the ‘sick air’ out of the hospital. By 11pm that night, I was suffocating on the job, breathing in smoke with minimal oxygen. I thought I was going to pass out. I spent the rest of the night alternating between hugged around an oxygen tank and wearing a mask. It was awful. Thankfully my coworkers pitched in and helped me out, otherwise I don’t know how I could have survived the night. Motrin was my friend on Thursday night.

Friday morning, I drove 2 hours to LA. My flight to Portland was thankfully on time, and by early afternoon, I was in Norio’s arms, content for a moment. I crashed at home, sleeping for a few hours, breathing in fresh Portland air. Around 5pm, we went to an open house. I was feeling poorly by then, but fighting desperately to stay normal.

At 7pm, my streak was broken. I was only crises/hospital free for 363 days:( I landed in the emergency room, my whole body aching, with tears streaming down my face. My joints were on fire, my chest was burning and I was in full blown crises mode. Thankfully, a little hydration and IV Dilaudid fixed me right up and they discharged me 2 hours later.

I’ve been in bed since then…fighting hard not to land back in the hospital. For starters…the ER I was at totally sucked, but that is a story for another day. I’m just glad that I’m home, lucid and able to type this without curling up in too much pain.

I have to go back to SB on Wednesday to start work on Thursday, but my body is begging me to take a few days off. I think I will comply. So instead of celebrating my 1 year anniversary of being crises free thanks to Nicosan, I’ve crashed and burned like everyone else.

Hope you are all well.

Related posts:


About Author

Sickle Cell Warrior

Sickle Cell Warrior

Tosin is dedicated to perpetuating healthy and positive messages about sickle cell. Although sickle cell is a subject often taboo in the communities this condition is most prevalent, Tosin’s message is that sickle cell is not something to be ashamed of and you can live a rich and fulfilling life with sickle cell. Sickle cell warriors are the most amazing people in the world, with a great fortitude for compassion, willpower and strength.

Related Articles


No Comments Yet!

There are no comments at the moment, do you want to add one?

Write a comment

Write a Comment


Support awareness & education for SCD


Sickle Cell PSA

From CT Sickle Cell Org---my favorite SCD PSA.

Join the Sickle Cell Warriors Database

Become a warrior. Sign up to be a team leader/member. Get contacted directly by SCW about events and research in your area. YOUR INFORMATION WILL NOT BE SHARED/SOLD TO ANY THIRD PARTIES. (See privacy policy)
Example SS, SC, Beta Thal, Monroe, etc.
You will receive pre-screened research opportunities on sickle cell disease
You will receive info about the sessions on the advocacy training classes
Read more here:
* = required field
Interested in local meetups?

powered by MailChimp!

Join us on Facebook!



have data = false

This is a demo store for testing purposes — no orders shall be fulfilled. Dismiss