Sikcell: People living with Sickle Cell

We still Hope

All Blog Posts (292)

how long does your normal crisis last

I was just wondering how long does everybody's crisis normally last. I have seen post where people have said there crisis last for minutes of hours. My daughters crisis lasts for like 4 to 5 days. Is this normal or abnormal? Please let me now. Thanks

Added by Sharolyn Hutchinson on December 19, 2009 at 10:08pm — 4 Comments

My thoughts during a painful night

I lie wide awake in my bed unable to get a wink of sleep or even stay in one place for 30 seconds. Freezing cold and shivering even though I'm sweating with clammy skin and the room is 78degree. The pulsating, banging sensation at my joints refusing to stop or at least slow down, whether I like it or not the pain continues to come like clockwork. There doesn't seem to be enough air in the room to fill my lungs and as I continue to struggle with the deep breathing excersise that sometimes helps,… Continue

Added by Tracy H. on December 18, 2009 at 6:00am — 4 Comments

Project Hemoglobin S- Sickle Cell Documentary Wants You!

Our Documentary needs faces!

We have a collage we're featuring in our film of Sickle Cell Survivors! If you would like to have your picture featured in our film during our collage of Sickle Cell Survivors Contact Us! We'd Love to have you! Let the world know you have Sickle Cell, Sickle Cell does not have you.

The process is simple:

Email us stating your interest

We forward you a release form

Take a cool picture of yourself, scan it and submit it to us as a jpg or… Continue

Added by Keda B. Reel on December 17, 2009 at 8:30am — 2 Comments

Promising New Treatment for Adults with Sickle Cell, from MSNBCNews.Com

Hello, for those of you who have not viewed the information from NBC Nightly News about the latest breakthrough in bone marrow transplantation for ADULTS, here is my take and the link to the article and corresponding video. I know that others have posted Dr. Fleming's story, but he is also featured in this NBC Nightly News broadcast:

http://www.msnbc. msn.com/id/ 34352186/ ns/health- more_health_ news/

Hello, Sickle Cell Friends and Family! I… Continue

Added by B. Jewell on December 12, 2009 at 6:47pm — 2 Comments

insurance coverage

Do you guys find it hard to get Medical Insurance when you have sickle cell? I have a friend who may be traveling. She is looking into Travel Health Insurance, but is not sure if her diagnosis will hinder her acceptance. What advice would you give to her? Should she attempt to get coverage. An extended stay in an overseas hospital is… Continue

Added by Cindy Fallsen on December 11, 2009 at 9:21am — 1 Comment

There Is A Place Where You Can Help Other Adults With Sickle Cell

We will be celebrating 100 years since the discovery of Sickle Cell Anemia and it's about time that we give our disease an adult face and voice. Although we have our Poster Child we also need something that symbolizes the adults living with the disease. Join me in my campaign to make SCD Soldiers the new identifier for adults with the disease. Become a SCD Soldier and become a part of the grand celebration in September 2010.

We are recruiting Support Soldiers and Front-Line Soldiers.… Continue

Added by Phyllis Thomas on December 9, 2009 at 7:50pm — 3 Comments

Staying Positive

Does anybody have any tips on how to stay positive when you have SSC and it's causing other health problems? Lately, I've been thinking a lot about my disease and the other problems it's causing. My goal is to live a long fufilling life with my husband and daughter, but sometimes it gets really overwhelming I begin to think of the worst. I pray and pray, but it's been hard.

Added by Sherrelle on December 9, 2009 at 4:40pm — 1 Comment

I am trying really hard to do as the Good Book says, Be joyful in hope…faithful in prayer, but what I really feel right now is OVERWHELMED! I have been getting my hands dirty...so to speak...trying t…

I am trying really hard to do as the Good Book says, Be joyful in hope…faithful in prayer, but what I really feel right now is OVERWHELMED! I have been getting my hands dirty...so to speak...trying to make a difference in our community. This past weekend I had my very first board meeting with FACE Foundation Inc. and all I can say is WoW!!

There is so much that needs to be done that I find myself wondering if I can really make a difference. There… Continue

Added by Kim Davis on December 8, 2009 at 9:45pm — 1 Comment

SICKLE

Since this is the perfect place to share information and more importantly, in effort to support one of our own, I invite you to check out Dominique Friend.

Dominique is an activist and advocate who is doing her part to raise awareness and funding to support improved treatment for those living with Sickle Cell. She has authored a book that has captured the essence of the daily struggles and unpredictability of SC. The book is titled SICKLE, A Story of… Continue

Added by Kim Davis on December 7, 2009 at 9:49am — 1 Comment

Winter....Eating...and being Sickle Cell Smart

Hello Sickle Cell Famz!

I've been getting alot of emails at sicklecelldiva@gmail.com and my blog www.sicklecelldiva.com....asking me what do I eat and how do I handle my day to day living with sickle cell. Well I've decided to give you some basic information that will hopefully help you and make your sickle cell living more comfortable.

((Eating))

I avoid as much processed foods as possible. I do however eat… Continue

Added by LaNora on December 6, 2009 at 6:00pm — 3 Comments

Winter is on the way!! Are you ready??

Hi there Sickle Cell Famz!! Well its getting cold and if you have pain like me...if its too cold a crisis can start..if its too hot a crisis can start. So with that said get your gloves, hats, scarfs and warm jackets ready!! And I also like to wear that funny looking bike-riding gear under my clothes (Zappos.com) It makes a great 2nd layer of skin if u dont want to wear a heavy coat. Also dont forget that heating blanket..although "moist" heat is the best heat for us Sickle Cell Smart folks!… Continue

Added by LaNora on December 4, 2009 at 4:00am — 2 Comments

Bone Marrow?

Hello everyone, my name is Angela and my daughter has sickle cell and my other daughter has the trait and will both will be getting tested for bone marrow to see if their marrow is a match. My daughter is not sure she would want to go thorugh with the marrow, she is afraid and I understand her fear, for over 16 years ; she has lived with this illness its a part of her, the fear is more what would she be without it. I do not want to make a decision for hear it her body, I have faith either way… Continue

Added by Angela Davis-Beckford on December 3, 2009 at 10:47pm — 4 Comments

Hospital or Home

Do you go to the hospital everytime your in crisis? My daughter has been in crisis for three days, She is eating and drinking, and I am using pain meds to control pain. She says she really dont want to keep going to the hospital. Any suggestions

Added by Sharolyn Hutchinson on December 3, 2009 at 5:47pm — 5 Comments

living with sickle cell

I believe my daughter has a mild case of Sickle Cell, compared to me. I pray to God she does not have to endure the severe pain that comes with having a pain crisis. She has been hospitalized a few times and has done very well! She is ony 6. Please keep her in your Prays........

Added by crystal on December 2, 2009 at 11:11am — 1 Comment

Could my having sickle cell be the reason why I'm still single?

It's been quite some time since I've been in a relationship at least six years. I start to wonder what seems to be the problem?? I meet alot of guys but they never seem to stick around past the getting to know you phase, then it hits me that things always fall apart the moment I get sick and they see the other side of my life that I deal with. Yeah they try to be sensitive but somewhere along the way they just don't have any genuine concern except when is the old Chasidi gonna be back to her… Continue

Added by Chasidi Poole on December 1, 2009 at 6:01am — 10 Comments

The Beauty of Truth

For years I have struggled to understand who I am. I can't say how many times I have wondered what my life would've been like had I not had SC. Would I have had children? Would I have earned a college degree? Would I still suffer from depression? There's an enormous host of 'what ifs' that have run across my mind, but I always come back to the truth. My reality.

The truth is that I do have Sickle Cell Anemia. The truth is that I didn't go to college because I was too lazy to… Continue

Added by Kim Davis on November 30, 2009 at 8:01am — 1 Comment

If They Only Knew

Many times...more than not...I have wished pain on others. WAIT...its not as bad as it sounds...let me explain.

My sister endured a recent hospitalization and it was one of those doozies where when they ask where you're hurting you can only mumble "everywhere". I took her to the closest hospital, which is under five minutes away. She was in immense pain and hurting so bad I could feel it. Unfortunately my sister knows this particular hospital's practices pretty well and… Continue

Added by Kim Davis on November 29, 2009 at 7:28pm — 4 Comments

I'm Coming Out!

Lately I've been talking about SC a lot. More than I ever have in my entire life. It is the one thing that I have always avoided and hated talking about.

Back in September I celebrated my 40th birthday. Words alone can't adequately express just how THANKFUL I am to have made it to the BIG 4-0!

According to my doctors, I have long out-lived my life expectancy; however, the Father said otherwise. I’m still here. Turning 40 had a major impact on me in several ways. First, it… Continue

Added by Kim Davis on November 24, 2009 at 9:01pm — 5 Comments

FIND SOMETHING TO BE GRATEFUL ABOUT

So grateful I am to have found this community of SC bloggers. It is impressive to see the number of members here sharing themselves with one another.

The following post is something that I journaled about earlier this month. I feel compelled to share it here on this forum with all of you. Be encouraged!

~NO MATTER HOW HARD IT GETS, FIND A WAY TO FIND SOMETHING TO BE GRATEFUL ABOUT

For some reason I thought that the very next time I'd have to be admitted into the… Continue

Added by Kim Davis on November 24, 2009 at 8:09am — No Comments

Project Hemoglobin S- Thassalemia

Greetings,

The Sickle Cell Documentary is looking for Thassalemia minor or major sufferers that are willing to share their stories of stuggle and triumph. If you have THassalemia minor or major and are interested you are encouraged to contact us @
docprjtquery@demarfilms.net

Become a FAN on Facebook
Project Hemoglobin S

Added by Keda B. Reel on November 22, 2009 at 11:10pm — No Comments