Sikcell: People living with Sickle Cell
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Young Black Women in a White Community.
I am a 24 year old African American/ Creole Women living in Sonoma County. I was diagnosed with SCD when I was 3 years old. I live with my mother and father still because my health has been on the down turn ever since I was diagnose with RA (rheumatoid Arthritis) last fall 2010. I have 2 sister and 3 brother one of my brother has the trait and one of my sister has the trait but I was the lucky one to get SCD not just SCD but SS trait. Not SC or SA, SS the worse one, or so I have been told. I am currently a full time employee and full time student. People say I work too hard and end up stressed and in the hospital.
When I was young my SS was really bad and I had surgery, spleen gallbladder and appendices taken out all at the age of nine. After that for a few year of my youth (junior high and high school) I rarely had any issues with my SS I thought myself well. But little did I know after I started attending college things would get much worse. I now half to deal with LIFE like us all do. Paying your own bills, working, school, social and personal life and family. All while trying to stay sane. My SCD has taken a lot out of me emotionally and physically. My social life went downhill. I don’t talk to my friends from high school anymore and they don’t seem to want to talk to me. It was just hard to keep up with everything because I was always in and out of the hospital. And I don’t like to put anyone through that stress. It became impossible for me to hold down a job because I miss so much work that no one wanted to hire me. And my grades at school fell, I went from being a straight a student with a 4.0 GPA to a student that never finished her work, dropped out of classes and my GPA was now less than a 2.0. All do to my SCD.
Life was hard I would cry myself to sleep at night wondering why God had to give me SCD and why I had to go through what I have. I would always think that I would ever get married or have kids or even live a long healthy life. How could I went I was sick so much, and thinking who would ever want to support and take care of someone with this disease and may not live for long. Life for me was depressing and lonely. Bills stacked up and I was always in and out of Dr Offices and hospitals.
Since then l can say life has gotten better. Still in and out of the hospital WEEKLY and Dr Appointments every week but I’m happy. I have found someone who loves me and wants to be with me and take care of me. He doesn’t care about my SCD but he does worry a lot went I get sick. But he’s always by my bed side when he’s not working. Family is very supportive and helpful with whatever they can. Whether that is bring me not nasty hospital food or picking up or dropping off my homework for me at school. My job seems to be respectful and concerned with my health and do whatever they can to help not make anything to stressful for me. When I call in and can’t make it because I’m in the hospital or need a day off to go to the Dr they understand.
Life doesn’t seem to be that bad went you have support but I still have break down moments and end up crying my eyes out with the WHY ME, why did this have to happen to me. I am a very determined, hard headed woman that works to hard, or so I have been told. I just wish there was something or some way to let people know and or understand what its like to live with this disease. In my case I try to inform everyone that I feel needs to know to make my life easier when I get sick. I also do it because I feel that it is something that everyone should be aware of and not look at us like we’re just druggy’s looking for our next fix. One thing I really don’t like about this disease is that we could look healthier then ever but feel incredibly crappy.
Well that’s just a little insight to my life dealing with SCD if you have any questions for me please feel free to ask I love talking about this and I think it helps tremendously.
Comment
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Comment by Edith Browne on September 24, 2011 at 1:08pm
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I LUV U! YOU ARE DEFINITELY GODS ANGEL. ONE THING ABOUT PEOPLE WITH SCD WE ARE STRONGER THAN ONE WHO DOES NOT KNOW HOW IT IS TO BE SICK AND COME BACK STRONG AND WILLING. WE DO GO THROUGH SOMETHING BUT WE NEVER FORGET GOD IS ALWAYS THERE IN THE END! AND REMEBER OUR PAIN IS TEMPORARY UNTIL WE GO THROUGH OUR CRISIS AGAIN BUT WHEN YOU ARE WELL MAKE SURE YOU ARE GOING TO SEE THE DR. ADAPT TO THE HEALTHCARE SYSTEM, MAKE IT PART OF YOUR LIFE!!! YOU WILL LEARN MORE. DON'T COMPARE YOUR LIFE STYLE TO ANYONE ELSES YOU COME FIRST ALWAYS, NOT MARRIAGE, CHILDREN, SCHOOL, NOR WORK. YOU WILL SEE WHEN YOU REACH 44 OR 86 YEARS OLD LIVING WITH SCD **************TAKE CARE OF YOU AND TRUST IN THE MAN ABOVE, HE WILL GUIDE YOU***********
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Comment by La'Toya Monique Bryant on July 29, 2011 at 6:49pm
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wow its funny how i just got on dis sight n im sittin at da comp cryin n feelin srry 4 mi self once again n 4 gd reasons dis time then i come across yur story n its crazy cause its like yur tellin mi story 4 me i am also mixed n evrything in ya story is how mi life has gone except 4 finding the understanding job n gettin back in school and the ra (srry 2 hear dat) like we need ne thing else on top of da ss its like evry time i try either 1 of them it never works out 4 me i cnt get mi foot in the door b4 im sick or back in the hospital so i just wanna say yu go head im happy 4 yu that despite all this yu r still doin great things wit yur life i just hope that 1 day ill b luckly enough to do great things wit mine also wit out mi ss slowin me dwn
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Comment by Luchy on July 3, 2011 at 6:16pm
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Hi dear,do u mind me sharing this piece with my scd friends on facebook? U can add me to view it..luchy Ejiz! I just love it! Pls respond!
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Comment by P.Allen Jones on June 3, 2011 at 5:16pm
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You're 24, girl you've only just begun. Keep being tough. Fight that battle with both fists up. We (people with SCD) are an inspiration to the world. We have to live, love, and suffer all at the same time. And, we gotta do it with a smile on our face.
And you can smile. Find something you love; music, art, writing, singing, whatever, then do it. We must live on inspite our pain. Will we have pain? yes Will life suck sometimes? yes But, we have to keep getting up, keep fighting.
I told my daughter once "Life is tough, get a helmet." It sounds cold, but it's true. We are given this one life, good, bad, happy or sad. It's all we are given. What we CAN do is make the best dang try of it with the gift's God's given us. And, I believe we are ALL are given at least one gift.
So,live on Miss Creole Woman Living in Sonoma (lol) and live the BEST life you can. Oh, and call on Jesus too. He does hear our silent little prayers, at night, when we're in pain....I assure you. :-)
God Bless!!!!!
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Comment by N'Shai Green on May 31, 2011 at 10:40pm
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Hello ^_^ i have a website ALL about sickle cell that is for people to learn and for people to come together and feel comfertable (kinda like this but not as awesome XD) and i would LOVE it if you would agree to be one of my insperational person of the month the website is http://sicklecellneedhelp.weebly.com/index.html and if you would like to participate just email me at nshaigreen@gmail.com i hope things get better for you. =] plz get to me as soon as you can k ^_^
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I'm 31 with 3 kids an a husband I've been thru an feel every thing u said...I have SC but u use 2 live in the hospital it. Was my second home ...I couldn't keep. A job 4 being n the hospital so much. They told me I wouldn't live 2 c 18,but. The lord has blessed me with almost 33 years an 3 healthy kids which I thought I would never have an the best hubby ever ..he takes me 2 every Dr.appointment goes 2 Walgreens 4 my meds an tends 2 the house an kids, he's our Mr.mom cause I'm 2 tired. 2 clean all the time..I feel bad cause I can't do certain stuff with my kids r plan ahead 4 outings r trips caused I never no how I'm gonna feel...I wonder why I had 2 b born with this terrible disease this pain is like nothing no human should have 2 go thru ..an no 1 understand a SCP like another SCP..its good 2 know that your not alone in however u feel or how we live were tired an sleepy an people think your lazy ..God bless u an all your dreams ..feel. free 2 talk 2 me anytime :)!!!
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