Sikcell: People living with Sickle Cell

We still Hope

All Blog Posts (292)

Finally Nicosan Day One!!!

Today is my first day of nicosan. I originally bought it a couple month ago but after recently being diagnosed With blood clots, my doctor, my mom, and I decided to wait to start the medication until i was done taking Lovenox.Even though I am not finished with taking the medication (lovenox), I have decided to take the nicosan anyway.I have heard great things about it and wanted to try it out for myself. To document my progress i will be writing daily blogs about my experiences throughout the… Continue

Added by Kierra Johnson on September 8, 2009 at 10:16pm — 2 Comments

Pilot Program for a drug that targets sickle cell crisis

I came across this article the other day and am keeping my fingers crossed that this drug will be proven effective for treating sickle cell crisis.

http://www.reuters.com/article/pressRelease/idUS174025+03-Sep-2009+BW20090903

Added by Ava Grace on September 8, 2009 at 11:25am — 1 Comment

Shimmy Shimmy Shimmy

So one thing that is important to me, is belly dance. I've been doing it for about 2.5 years now. I'm not a professional dancer, nor am I in any troupe, but I take classes, and dance at the Hafla's and various student shows. Its just a fun hobby. Its also one that is responsible for a giant boost of self confidence in myself. Before I started dancing, It could be said that I really didn't feel to good about myself. I was a bit insecure about my weight, even though I really wasn't that big, at… Continue

Added by Nana007 on September 1, 2009 at 3:53pm — 2 Comments

Pictures

Okay everyone...seriously, I'm tired of looking at those green bobble heads! Please put pictures up...give the site some more personality. I love being able to put faces to names. If you shirk at putting a pic up of yourself, put one of your favorite pictures, or something that represents you. Say NO to green bobble-heads!

Added by Sickle Cell Warrior on August 27, 2009 at 4:09am — 2 Comments

Dee

I like this site. Great.
Lets continue the dialogue.

Added by Darryl Alladice on August 26, 2009 at 11:03pm — 2 Comments

Has anyone every experienced severe muscle spasms. My dauhgter is 15 and the last 8 months have been horrible for her. Lately, her crisis have changed and she screams out saying that she has this sha…

Has anyone every experienced severe muscle spasms. My dauhgter is 15 and the last 8 months have been horrible for her. Lately, her crisis have changed and she screams out saying that she has this sharp pain that runs from the top of her head to her ankles. She is taking morphine and everything and nothing helps the sharp pains. She was admitted in the hospital several times for this type of crisis. She was on a dilutted pump and she still would get the sharp pains. I just wanted to know if… Continue

Added by Sharolyn Hutchinson on August 26, 2009 at 9:17pm — 3 Comments

On The Other Side Of Through

That's the title of my new Blog Post at my sight....http://1chanceonly-bigdaddy54.blogspot.com/ hope we can get a discussion going about some of this. Maybe it will help someone.

Added by Ronald Ragin on August 22, 2009 at 8:49pm — No Comments

using a plane

can anyone help me n tell me if u can gat crisis when u use a plane one doctor was telling me that u cant use a plane when u r a sickler how true is this and what should i really do when i have to use a plane

Added by schola on August 22, 2009 at 5:45pm — 13 Comments

This is amazing!

Hey Everyone! I just joined People Living With Sickle Cell and I am suddenly filled with so much hope! I live in MN where only 12% of the population is Black and where I have probably only met 1 other person with sickle cell. I have felt so isolated. It is so hard living with an illness that you have to convince the doctors that you really are suffering from excruciating pain on a daily basis. African Americans already have to deal with the day to day racism that lives within our society. Add… Continue

Added by Lala Skye on August 22, 2009 at 1:30am — 2 Comments

folic acid

what should i take to help my hb iron tablets or folic acid

Added by schola on August 20, 2009 at 4:59pm — 2 Comments

Does swimming trigger a crisis?

Hello All,

I noticed from a young age that any time I went into a pool I got a crisis. I am not talking about showers and tub baths. I would like to hear from the rest of the community. It is very frustrating, especially now because it is summer in the northeast United States. I live in a development with a heated pool. I have gone in for five minutes, but I don't dare to stay longer than that.

I took swimming lessons last september, but I had to stop because although the pool… Continue

Added by Ali on August 18, 2009 at 2:17pm — 6 Comments

Hello There

I just joined this website not to long ago. I'm so happy I found out it to be able to connect with others with Sickle Cell disease is great. Especially since I'm the only one in my family with the disease, so I really don't have anybody to talk to about this.

The name is Nana I'm 22 soon to be 23 in another month. I live in Atlanta, Ga currently although I am originally from New Orleans. I am a student, I go to school full time and work part time as a hostess in a restaurant. I go to… Continue

Added by Nana007 on August 13, 2009 at 6:30pm — 4 Comments

Hard Week

This week I been really sick I keep get these sharp pains all over my body. I cant walk that good I need help coming downstairs. It hurts so bad I be crying. I dont like being sick because when I'm sick I cant do nothing because my legs be hurting really bad. I get most of my pain in my legs and back and arms. That's what happened this week.

Added by Richard Hutchinson on August 12, 2009 at 5:11pm — 1 Comment

Hello Everyone

Hello Everyone:

I am glad I found this place I would like to meet new people with Sickle Cell Anemia and make new friends. I will be back on later tonight.

Added by etta on August 10, 2009 at 10:05pm — 3 Comments

How keep your faith....

J how difficult the life can become when we found that our love one born with a special condition. I think everything goes to the floor and you just loose your conscience when the doctor just look at you and say: "You know, your baby has some disease for life." I confess that for the first time in my life I questioned God's action, and I wanted to know why this was happen to me.

For while was difficult even to think about the doctor's words. I felt guilty and a looser.

But I thank God… Continue

Added by Nina on August 9, 2009 at 4:55pm — 1 Comment

My daughter has Sickle Cell Disease

I have a 15 year old daughter who has sickle cell. When I see her in so much pain I feel so helpless. She was diagnosed at birth, so it's been a long 15 years(worth it). She was doing really good up until about 2 years ago. She would have minor pain crises and alot of fevers(enemy) but nothing to major. In the last two years she has had severe pain. She went from taking Advilt to control the pain to now she is taking dilloted through the IV and she is still in pain. For all the mothers out… Continue

Added by Sharolyn Hutchinson on August 6, 2009 at 11:28pm — 3 Comments

Beware of Sedenafil (Revatio) Study for Sickle Cell Halted

Don't know if you are familiar with this study on the effects of sedenafil on Pulmonary Hypertension? Pass it along.

http://www.docguide.com/news/content.nsf/news/852571020057CCF6852576010056215E?OpenDocument&id=48DDE4A73E09A969852568880078C249&c=Cardiology%20Other&count=10

Added by Ronald Ragin on August 1, 2009 at 6:00pm — 2 Comments

Some Good Things Turn Our Not So Good

I just posted on my site that after my hospital stay a week ago I had to go back to have my Port looked at. Find out what happened and join in on the conversation at the link below.

http://1chanceonly-bigdaddy54.blogspot.com/

Added by Ronald Ragin on July 30, 2009 at 4:56pm — No Comments

GOING THRU DETOXIC !!!!!!!!!!!!!!!!!!

I JUST GOT OUT AN THREE WEEK HOSPITAL STAY & THEY CALL THEIRSELVES DETOXICING ME AND 2 ME IT IS RAZEY I HAVE BEEN HOME 4 ABOUT AN WEEK WITH NO PAIN MEDS AND I STILL HAVE PAIN BUT I'MTUFFING IT OUT R TRYIN ANYWAYA I DONT KNOW HOW MUCH MORE I CAN TAKE NOW I WANNA KNOW HAVE ANY OF U'LL TRY IT AND HOW DID U FEEL ????????????????????????

Added by MS.KNIGHT on July 29, 2009 at 8:55pm — 1 Comment

Have You Ever Caught (or suspected) that your Nurse gave you saline instead of your pain medication?

I had to write on this topic! Unfortunately, I have had several experiences where I have caught my nurses trying to "pull a fast one" as though I could not tell the difference! If you have been on pain medication for years like I have you know the difference! I watch my health care providers very carefully because I have come to find that I can't always trust them. They already have it in their minds that Sickle Cell patients aren't really sick and are just "drug seekers" so why wouldn't they… Continue

Added by Neise on July 28, 2009 at 11:46pm — 5 Comments