a community of those living, loving and surviving Sickle Cell Disease
Meet Jazzlind: Daughter, Student, Girlfriend, Warrior
Meet Jazzlind: Daughter, Student, Girlfriend,…
Posted 59 days ago

This week's warrior is Jazzlind. She's a 15 year old full of spice and life, and she has candidly opened up about her experiences with sickle cell.

Meet Jazzlind: Daughter, Student, Girlfriend,…
Meet Akimie: Artist, Runway Model, Warrior
Meet Akimie: Artist, Runway Model, Warrior
Posted 86 days ago

Ever wondered if you could be a working model in NY with sickle cell? If Akimie can do it, so can you!

Meet Akimie: Artist, Runway Model, Warrior
Success Begins with You!
Success Begins with You!
Posted 89 days ago

Tosin explains how you can have a successful and happy life with sickle cell. Once we shift our mentality, we all can achieve all our goals and dreams.

Success Begins with You!
Meet Clarissa: The Warrior Behind of HeartofGold.org
Meet Clarissa: The Warrior Behind of HeartofG…
Posted 89 days ago

The creator of the Heart of Gold foundation shares her inspirational journey with sickle cell below. Read on...

Meet Clarissa: The Warrior Behind of HeartofG…
Meet Kandis: Mom, Nurse and Warrior
Meet Kandis: Mom, Nurse and Warrior
Posted 90 days ago

Meet Kandis, an intrepid and determined young lady. Even with AVN and sickle cell, she has accomplished all her dreams and strives to inspire others.

Meet Kandis: Mom, Nurse and Warrior
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Tosin's Corner

Checking In…

Checking In…

Hello everyone, It’s been a few months since I posted on here. First of all I need to apologize for the silence. I know that it may have been very frustrating to come here with no new updates. Since October, I’ve faced alot of challenges [continue reading...]

Setting Goals

Setting Goals

For those of you who haven't zeroed in on your purpose in life, this is a great exercise when you have the time. Often we have 'mental lists', but an actual physical list gives you something concrete, something that you can check off, and something [continue reading...]

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Double Whammy

I’d been skating on thin ice for weeks, dealing with daily pain and my eyes were definitely juandiced. I knew I was about to fall sick, the question was when. 2 weeks ago, I was thrown into a crushing series of L3′s uncontrolled by meds. This hit me right after work, when I was on the way home. I could attribute it to the change in weather, but all I know is that my ass was laid out in pain.

Norio took one look at my face and said, “You’re going to the hospital.” For once I didn’t argue, just gingerly put my shoes on and a thick coat. It was a fast admission, and I was in lala-land approximately 45 minutes after I got into the hospital. My hematocrit was 7.5, which for me is low but not low enough to transfuse. The ED docs wanted to admit me anyway, so I went for it.

I was hooked up to a Fentanyl PCA, which left me dealing with hardcore constipation and drinking prune juice like water. The first few days were a blur of myriad images and hallucinations, the only constant was Norio’s soothing presence. I remember one time I was zonked out fighting demons in my nightmares, and all I could hear was his voice talking to the nurse, and that was enough to calm down. By day 4, I was lucid, and day 6, I was ready to come home. I hate being in the hospital, I feel like my life is being wasted with every minute I’m a patient there.

My discharge was on Friday, and I spent the weekend recuperating, gearing up for work on Monday. On Sunday I had a burst of energy and decided to clean the apartment from top to bottom, the dead flowers were really starting to bother me. I even went ahead and made dinner, slipping into sexy lingerie before Norio came home.

Except by the time he got home an hour later, I was shivering under the blanket, heat blasting on 90 degrees. He was surprised to find me decked out in a sexy outfit, but unfortunately I couldn’t use it, I was in that much pain. Grrrrr!

He took me to the hospital a few minutes later (yes, I did change my outfit), and then I went through my hellish ER experience. That’s a story for another day. I was in the hospital for a whole ‘nother week, and even I wanted to throw in the towel when 2 days after my blood transfusion I still wasn’t feeling better. Add to that, my HR department let me know that if I was out of work for more than 30 days I would lose my job…thanks fuckers!

Added to that, there was some family drama going on—people really do have bad timing. The bright spots were that I once again felt the outpouring of love from my family and friends, even my former boss sent me a huge gift basket. I was more than ready to go home when the Dr. asked me, I didn’t even wait for him to finish. The nurse pulled out my PICC line and it was like losing my best buddy, that PICC line helped me when all my veins crapped out.

All in all, I was home for the weekend and then had to drag myself into work on Monday.

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  • Worldwide: UN Sickle Cell Awareness Day!! on 06/19/2012
    in 31 days and 10:22 hours.

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Interview with a Medical Doctor with Sickle Cell Disease

Interview with a Medical Doctor with Sickle Cell Disease

Ever wondered if you could be a doctor with sickle cell? Well you can follow that dream. Dr. Y. explains to us how she went through medical school and became a physician. [continue reading...]

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