Sikcell: People living with Sickle Cell

We still Hope

All Blog Posts (292)

How Do I Feel

I place a new post on my blog. Since I am recuperating from the hospital, I thought I would talk about this subject. Hope you can join in on my comment section.
http://1chanceonly-bigdaddy54.blogspot.com/

Added by Ronald Ragin on July 26, 2009 at 11:59pm — 1 Comment

My Trip To Camp

Yesterday I came home from my camp the camp is called The Hole In The Wall Gang Camp. At camp I was in the green unit. The green was the older unit.The green unit got to do everything we got to climb the tower we MC for stage night. We got to stay up to 11 at camp we got after parties. This was my last year because I'm 15 years old you only go up to the age of 15 so I was so sad that this was my last year. I had fun my last year at camp. I love The Hole In The Wall Gang Camp.

Added by Richard Hutchinson on July 23, 2009 at 9:36pm — No Comments

Day 5 At Sickle Cell Camp

View my blog and you will read about my hospital adventure as well as the Sickle Cell Camp in Los Angeles. Click on the link below.

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

Added by Ronald Ragin on July 22, 2009 at 8:06pm — 2 Comments

Hate what the Pain Meds make you say... What did I Just Say?

I hate when you have no inhibitions when on big doses of pain meds(Narcs) and when you come off them u realize u said something u shouldnt have said or was embarrsing and then u just wanna run away and u keep thinking of what others r thinking about what u said ...also i hate when the meds falsely motivate me and when im off them the motivation is gone and u feel sort of weird.
is it me and my personal insecurities or do we all do this

Added by Dave on July 19, 2009 at 5:17am — 3 Comments

Sickle Cell Disease Foundation of California Camp Starts July 18

Go to my blog http://1chanceonly-bigdaddy54.blogspot.com/ to read my comments about this caamp.My blog is, Sickle Cell Anemia...The Male Perspective.

Added by Ronald Ragin on July 17, 2009 at 6:57pm — No Comments

Men With Sickle Cell

I blogged on my website http://1chanceonly-bigdaddy54.blogspot.com/ that Males with Sickle Cell are the silent majority. Go to my blogsite above and let me know whatyou think about it.

Added by Ronald Ragin on July 11, 2009 at 4:28pm — 3 Comments

new friend

hi. iam happy to find this wep .i,m 34 years i have sickle cell with three brothers one of them died this years . i hate to bee yellow eyes and face . i hop thate you can accept me with you and share me your experance with sickle cell .

Added by memy al alabduly on July 10, 2009 at 7:19am — 3 Comments

My 15yr old daughter Shatera with Sickle Cell

My life is really hard because I have sickle cell I am 15 years old. I was born with sickle cell I had sickle cell. .I was in the hosptial all of june I just came home on july 4. I was in the hosptial for 9 days. I had 8 blood transfusions in June. I am in a lot of pain the rate of my pain is 8, and sometimes I want to say 12, that's how bad it is sometimes the strongest medicine don't even work. That's life with sickle cell. Help Me Fight Sickle Cell.

Added by Richard Hutchinson on July 9, 2009 at 9:16pm — 4 Comments

It's a wonderful thing to have this site!

My name is Dan and I have Sickle cell SC. I am 34. I'm praying for everyone on here and I'm glad to have someone to talk about this with. We all are so blessed to be alive and able to communicate our problems.

I was diagnosied with this disease in 1996 when I was in the Navy. When I was younger, I went to the hospital once

or twice a year for extreme pain in my legs. The doctors told my mother I was having muscle spasms.

Everytime I would over use my muscles they would… Continue

Added by Dan Elliott on July 2, 2009 at 4:54pm — 4 Comments

Keeping the Faith

Hello All,

I wish that we could schedule a time when we sign on and chat about whatever is on our minds. Is anyone else interested in this idea? I like reading the comments, but I would like something in real time. I realize that we are all over the world, but some nights I am up late when I can't sleep.

The title of the blog is keeping the faith, but somedays are harder than others. I know that I am blessed. I haven't had a stroke or a hip replacement. However, this… Continue

Added by Ali on June 26, 2009 at 5:00pm — 2 Comments

This stupid disease

Hi everyone, I am Nikki I am new to this. I have hgb SS. I am a 36 year old female. Ihave had 4 strokes, and I have CHF and have compression fractures in my back. I live in the Washington DC metro area. I have a college degree and worked full time for about 9 years. I started my own business. I still work when I am able to but I have been getting sick alot lately. I hide my pain from my family because I hate hearing them tell me that ohhh its only in your head. I am soo tired of them telling me… Continue

Added by Nikki Peterson on June 19, 2009 at 10:52am — 3 Comments

Pain in Tears

Scars that bind

Tears that fasten me to u

Our pain unites us

So be true to this emotion

live without shame your wounds

Carry your head high as the tears flow.

Let the tears fall and express your pain

without reservation, without regret

because the more we share our pain

the closer we become.

Pain shared is real, true, pure

I can’t fake pain, so why do I try to hide the most true part of who I am?

Why are we so ashamed of that which… Continue

Added by Sickle Cell Warrior on June 8, 2009 at 6:44am — 3 Comments

hi

hey im , new here and i hope to enjoy the new experience.

Added by seulear hope on May 19, 2009 at 2:52pm — 2 Comments

uhhmmmmm... hey?

Sup, i dont usually blog but i guess ill atleast tell u bout myself. Im 19, currently goin to ITT Tech for associates in visual communications, Im a real laid back person, it takes alot...ALOOOOOOT to get me mad but if you manage to do that may God be with you. Ive been blessed not to have to go to the ER for more than two years and still counting, thats not to say i havent had a crises jus nothing too serious. I love music and i play games evry now and then but mostly dance. Yes i have SCD and… Continue

Added by Keenan Murray on May 6, 2009 at 6:30pm — 4 Comments

He just turn 9 mo on Friday and Yesterday start to walk forward in his walker.

I'm to happy and I need to share it with you my friends. Yesterday I got crazy seeing my little one going after me in his walker.

It's amazing how his system works fast. Two days ago he was a little bit in bad mood. Is always like that after we went to see his Hem. He definitively doesn't like all the procedures, but soon everything goes back to the normal!!!!!

Despite everything looks fine and the only concern be his hgb level, we keep looking him very close. My husband says I'm… Continue

Added by Nina on May 3, 2009 at 3:23pm — 2 Comments

Sickle Cell Pain Research

For those of us that keep running into Dr's, that deny that we are in pain, here is an article, that I've come across that would be great for educating the ignorant masses. Physicians are more prone to believe research 'from their own kind' as if your word on a disease you've been dealing with all your life is not enough. *rolleyes*

This is a qualitative study done in Virginia which states that sickle cell patients are in pain most of the time. It's a PDF file...you must have Adobe… Continue

Added by Sickle Cell Warrior on April 29, 2009 at 5:43am — 2 Comments

Hello everybody!!!!

How nice is find something like this blog. This will be very helpful, because by it I can communicate with people who live with sickle cell. First, I beg you pardon because my English is not good, then sometimes it will be confuse.

But any way, here I going to tell a little about me and my family.

As we, my husband and I, are carriers of Sickle cell trait, my little baby born with SCA. He was diagnostic in the first blood screening right after he was born, and 2 weeks after his… Continue

Added by Nina on April 28, 2009 at 2:07pm — 7 Comments

I miss working

I became ill at work on May 7, 2008 and was taken to the hospital by ambulance. I returned to the job on May 21 and left again on May 23. On May 29 I received a call informing me that I was fired due to attendance. I have not returned to a job since then.

I feel isolated. I am only 42 years old. I never had a "profession", but I worked steadily from the time I graduated from college. At one point, I attended grad school for three semesters. My doctor said do you want to be dead with… Continue

Added by Ali on April 21, 2009 at 6:33pm — 3 Comments

Nicosan (Nigerian drug) for stickle cell - PLEASE READ IT ALL - (need you help to help yourself)

I am from Brasil, I do speak a couple of languages so forgive me If i have any gramatical errors here...

Actually I am from Argentina and I live in Brasil. My wife is from Brasil and has sickle cell).

I am always searching the net for any "solutions" to this problem. I found a drug from Benin (Africa) called VK500 which acts like Nicosan, but actually VK500 is not being produced at the moment (financial problems in Benin and Angola, which are the two countries who uses… Continue

Added by Eduardo on April 13, 2009 at 1:43pm — 4 Comments

Overwhelmed mother of sickle cell infant..

What can i say - i am a worry wort

I am blessed to have a beautiful baby girl, that has Sickle Cell Disease. Why so overwhelmed you may ask. No it's not mother hood. Its the fact that i feel robbed! I always dreamed of being the cool mom who shops and hangs out with her kids. That we will share everything, now i have to live outside of my fantasy dream. We do not share this disease. Which means i was robbed of the one job a parent has, protecting their child from danger AND… Continue

Added by SHAY FRANCO on April 6, 2009 at 5:56pm — 3 Comments