Sikcell: People living with Sickle Cell

We still Hope

All Blog Posts (292)

Reese responds to all the "WELCOMES" from the community

I just came home from being in the hospital for 8 days. i feel much better now on a scale of 1 to 10 my pain level is about a 4 which is tolerable for me i am hardly ever completely pain free anymore. i can't remember the last time i was completely pain free but 4 or less i can deal with 8 or more for more than 24 hours straight and i need to go to the hospital especially since i take 160mgs of OxyContin twice a day plus 60mgs of OxyCodone for breakthrough pain as needed. When all of this fails… Continue

Added by Maurice Lamount Alford on March 3, 2010 at 3:12am — 2 Comments

Sickle Literature

Hey Fam, any of you know where I can get lots of sickle cell literature, for example, pamphlets, brochures, etc? Anything related to sickle cell to put up in doc's offices and other places.

Thanks,

Marcus

Added by Marcus McKinley on February 28, 2010 at 4:08pm — 8 Comments

Faces of Sickele cell

Hello comunity,

I'm making a poster/ flier to spread the word about this site and I needed an image that would apeal to people to put on it.

I didnt want to put a picture of red blood cells so i was thinking about making a montage and i was wondering if you could use some you YOU!

Please let me know if you would be interested. The poster is only going to be at my hemoc clinc , no online, however when Im finshed I would gladly put it up so you can put it at your hemoc… Continue

Added by Bukky Ade on February 28, 2010 at 12:28am — 3 Comments

Smile through the pain.

Hello everyone, i want to share this with you.. This morning i was terribly weak due to last night crisis and i got a whole lot of stuff to do and i watchd my clock tick by... Honestly,it wasnt funny at that time cuz i still have roughly 2hrs to hit the road,so i relaxed... By the time i looked at my time again,i knew its time to get ready but i have a problem,the strenght is yet to COME! What the hell? I drag my body out of the bed,said my prayers and hit d bathroom(it took me more than 35mins… Continue

Added by Luchy on February 26, 2010 at 12:58pm — 1 Comment

Busy Day

I got a busy day today and i'm terribly weak... Its almost bright and i need to be there. Any encouragement? Cuz i need my spirit to be lifted. Arghhh!

Added by Luchy on February 25, 2010 at 10:50pm — No Comments

SCD National Advocacy at the Capitol

Hey Fam.... I just thought I would let you all know that SCD Associaton of America will be having the 2nd Annual Advocacy Day at the capital in Washington DC. I went last year and we advocated for sickle cell all day at the capital. We talked with our legislators and others. Other SCD state chapters attended as well and you all get to meet others with sickle cell or others that are motivated by this disease in some kind of way. It is a great experience. It is March 25th, 2010 in Washington…

Continue

Added by Marcus McKinley on February 21, 2010 at 11:15pm — 3 Comments

My Brother has sickle cell and he is also a heroin ADDICT

I AM SO HURT MY BROTHER 43 HAS SC AND HE SNORTS HEROIN JUST ABOUT EVERYDAY. HE SMOKES CIGARETTES BECAUSE OF THE HEROIN. AND IM AFRAID THAT HE FEELS HE WILL DIE AT THE LIFE EXPECTANCY AGE IN HIS 40"S ANYWAY- I WISH I KNEW HOW HE FELT ABOUT THAT. IS THERE ANYONE THAT HAS OR KNOW OF SOMEONE THAT TURNED TO HEROIN BECAUSE OF THEIR ADDICTION TO PAIN MEDS?

Added by KMO on February 20, 2010 at 11:06am — 2 Comments

Maurice introduces himself to the community

Hello everyone on the People living with Sickle cell website. I am a new member who has been very surprised to find this site. I was completely blown away with all the info on the site. I have been living with Sickle Cell Disease for 40 years suffering pain crisises for 38 of those years. I arrogantly believed that I knew everything about my illness but in the last few months I've experienced things that had never happened to me before and started searching the internet for more and more info.… Continue

Added by Maurice Lamount Alford on February 19, 2010 at 1:28am — 9 Comments

The Cold Was So Worth It: Mardi Gras 2010

Just got back home from New Orleans Mardi Gras was fun, but still lacking. I'm from New Orleans and Mardi Gras is something I grew up with. It's not the same like it was before Katrina. And the city looks awful in some parts and even the nicer areas has its share of boarded up houses. Not as many but you see them. On Bourbon, in the Garden District, the 8th ward which is where my mothers family is from. New Orleans East which is where I grew up looks empty. And oh man the lower nine is pitiful.… Continue

Added by Nana007 on February 18, 2010 at 12:05am — 1 Comment

Angry

Angry or am I just being irrational, Im 16 its 5:15 and I cant seem to catch some sleep

Uncontrollable emotions followed by an uncontrollable pain

As I write tears are flowing, and I can feel the blood sickle through my veins

Im so sick and tired of living this life, but who is to blame. I've never been so afraid to die, a feeling of incompetence makes me feel ashamed

I have a appointment tomorrow to talk about transfusions. Because I've had acute chest over 12 times, in the… Continue

Added by Brandon Williams on January 29, 2010 at 5:35am — 9 Comments

Future Treatments

Hey, all!

I hope everyone is doing well.

Last week, I took my daughter to her first hematologist appt at Johns Hopkins. She is 9 weeks old and has SS )o: Her hematologist told me that there are new, better treatments for SS coming down the pike, including less complicated bone marrow transplants and safer drugs, and that treatment will be much better for her generation than the preceding generations. However, I forgot to ask him when will those treatments be available. He… Continue

Added by Ava Grace on January 21, 2010 at 4:17pm — 1 Comment

Sickle cell Activism

Hello fabulous warriors!

Okay, everyone here has gotten something from the sickle cell online community in one way or another. Now here is your chance to participate and help others with knowledge the same way you have been helped. Remember, we are the only ones that can change the way the world views sickle cell warriors, and we do this by starting in our circle of influence. Here are a few organizations, surveys and communities that need your input to grow and effectively serve… Continue

Added by Sickle Cell Warrior on January 18, 2010 at 12:30am — 4 Comments

Pain Crisis

Good Day all, I need some info from u all. I'm am in a pain crisis as we speak, but this pain is different. I just wanted to know has anyone else experience this. It started with chest pain, but besided the pain my chest is burning.. Then the pain is moving from the chest to the hip and the knees.. My knee are on fire.. The pain meds are just making me throw up. I am trying to avoid a hospital visit... Please let me know if this happening to anyone....

Added by Chantell-the Overcomer on January 16, 2010 at 1:00pm — 3 Comments

People asking you for your medication

I have had problems throughout my life where people in my life have come to me and asked for some of my medication. In most cases there is absolutely nothing wrong with them, they want it for recreational purposes. This is very frustrating to me because it makes me feel like they don't care about me or my illness. If I give them all of my medication then what am I suppose to do when I have a crisis and really need it? We all know that if we go to our doctors too soon and ask for a refill before… Continue

Added by Neise on January 11, 2010 at 6:59pm — 2 Comments

Journey through Fear/New Beginnings

Unlike most, I never make resolutions. That's because, in part, I know me well enough to know that I won't keep them, but also because I really do try each and evry day to be better than I was was the day before. I spend a lot of time thinking...reflecting...looking for the lessons that I may have missed. Always trying to be honest about who I am and how I feel. I think a lot about the why behind the why I am the way that I… Continue

Added by Kim Davis on January 2, 2010 at 7:44pm — No Comments

Hip Replacement

Happy New Year All?
Good night,I wanted to know if anyone has had or know of any sickle cell patient, having to get a hip replacement? What was the outcome? Did it help? How long it it good for? My daughter maybe in the need of a hip replacement, please keep us in your prayers. Thanks for listening, it really means alot knowing that you all are hear.

Angela

Added by Angela Davis-Beckford on January 1, 2010 at 8:57pm — 3 Comments

Home

My daughter came home yesterday. She is doing a lot better. She is so glad to be home. Thanks everyone for the prayers.

Added by Sharolyn Hutchinson on December 30, 2009 at 9:03pm — No Comments

In crisis on Christmas

My daughter is back in the hospital. She started with pain and last night she had a fever. She did get to open her presents but then we had to take her to the hospital. Hopefully she wont be there that long. Everyone please pray for her. Thanks.

Added by Sharolyn Hutchinson on December 25, 2009 at 9:35pm — 4 Comments

Merry Christmas and Happy New Year

HELLO EVERYONE:

I WANTED TO WISH YOU A MERRY CHRISTMAS AND HAPPY NEW YEAR. I HOPE EVERYONE IN GOOD HEALTH TO SPEND TIME WITH FAMILY AND FRIENDS.

Added by etta on December 23, 2009 at 7:53pm — No Comments

Stem Cell Cure?

The airways are popping. The media blitz is in full affect. Massive editorial posts have been sent all over the internet. The word is out. There MAY be a cure for Sickle Cell Disease.

According to a New England Journal of Medicine report dated December 10, 2009, researchers say that a new method of bone marrow transplantation cured nine out of 10 adult patients with sickle cell disease.

Researchers gave 10 patients ages 16 to 45 bone marrow stem cells. They gave… Continue

Added by P.Allen Jones on December 22, 2009 at 11:46am — 6 Comments