Written by Sickle Cell Warrior on 26 August 2012
Once in a while, I get to interview a warrior that epitomizes what the Sickle Cell Warrior philosophy is all about. Nicole is such a person. Read her life story here…she’s so bubbly and full of life, you just want to hug her through the computer!
How old where you when you found out you had sickle cell?
Well my Mother says I was diagnosed at 3 months old and she had no knowledge of the disease before I was born, but I believe I was around 5 years old when I started understanding something was different about me. Between the pain crisis, medications, doctor appointments & hospitalizations I was able to start making the connections of having Sickle Cell.
How were you able to cope with school and sickle cell?
You know I think anyone with Sickle Cell will agree that going to school & having Sickle Cell isn’t easy. From the multiple missed days, not being able to participate in certain activities to attempting to explain to your friends what’s going on at that age, it was hard. I think the best thing for a child with Sickle Cell in that situation is for the parents to get on the same page with teachers, the principal, staff, etc. You have to let them know this is my child, this is the situation and this is the game plan for any problems that may come up. Communication and preplanning is key. Nine times out of ten everyone will then be very supportive & understanding of the situation. Once everyone is on the same page I believe things can be a lot more manageable. Like I said it wasn’t easy but these are just a few things in my opinion that makes going to school and dealing with the disease a lot more do-able.
How did your childhood and your parents influence you in your choice of career?
My Mother is one of those “Angel on Earth” type of Mothers so whatever my career choice I knew she would be right there. She believed in me and whatever it was that I wanted to do. I was in the hospital a huge chunk of my childhood. Of course the worst part was the pain but I have so many happy memories of being in the hospital as a child. A nice, caring, understanding nurse can make a huge impact on any patient no matter what the illness. So I knew from very early on that I wanted to be a Nurse. I’ve always told myself one day I will be able to reverse roles. I believe that having a chronic illness such as Sickle Cell will only help make me better as a nurse because I have 26 years of experience being a patient. I definitely know what it’s like to be sick so to be in a position to offer care and compassion to others who are sick…sounds like a dream career to me!
Your mom sounds pretty awesome and you are right…nursing is the perfect career for someone that has sickle cell. What kind of experience and schooling does one need to get your job?
Well currently I am a full-time Nursing student studying to be a LPN (Licensed Practical Nurse). Becoming a LPN requires 2 years of education usually from a technical college. My ultimate goal is to become a RN, so after I graduate I plan to work a while just to gain some experience in the field before returning to college to get my RN.
How do you manage SCD with school?
I don’t have my career yet but I’m very active in working towards it, and managing my Sickle Cell while doing so is still important. I listen to my body & try not to put too much on myself. Going to school to be a nurse is stressful but I take my medication, I drink plenty of water and I stay on track with my doctor visits. I try and take care of myself or do whatever is necessary to able to keep up with everyone else so that I am able to stay on track, stay focused and not let Sickle Cell interfere with my plans, goals & dreams.
Have you noticed a difference in how your coworkers or classmates treat you once they know you have SCD?
I have the best peers & instructors! Once everyone found out I had Sickle Cell they were all so supportive. It was almost as if they couldn’t believe this girl with Sickle Cell is in school, working hard, going after her dreams…they were just so proud me. This in return made me even more proud of myself!
That’s so awesome Nicole! Keep pushing. What advice would you give to someone wanting to join your profession that has sickle cell?
To anyone with Sickle Cell wanting to join ANY profession I say, get up and go for it! Take care of yourself, manage your Sickle Cell, control your illness & not let it control you! You can be whatever you want to be in life. Believe in yourself, believe in your goals, get up & go for it, you CAN do it!
Has sickle cell limited any areas of your life?
As a child? Absolutely. I never understood why I couldn’t jump in the pool with all the other kids or why I couldn’t go outside on the few snow days Georgia does get in the winter. I stand at 6ft (& probably 1 inch, but hey who’s counting, lol) tall so I always heard, “You must play basketball?”, and yes I wanted to play but I always found myself explaining to someone why I couldn’t play. As an adult I’m much more educated on my disease. I know what my triggers are and I do my best to avoid them. Now I will pretty much do whatever I want (unless it’s just unreasonable). I take care of myself & I’m smart about the decisions I make. So now if jumping into the pool or going out on one of those rare Georgia snow days means taking a pain pill 30 minutes before to prevent going into crisis, that’s just what I do! I don’t limit myself anymore, I live life and have fun!
When you do reach obstacles in your life, what helps you through it?
Let me just say that people living with Sickle Cell Anemia are some of the strongest people on this Earth…period. We really go through it! It seems as if unless you have Sickle Cell too, you can never really understand what it’s like and what we go through. When I’m down and out, hurting, or just exhausted(I’m talking about that dirt dog exhausted!), and feel like I can’t go on I take a moment to realize what I’ve already been through, how far I’ve come & how Blessed I am to have made it this far. That is what gets me through. One day at time, I’ve made it this far and there’s nothing going to stop from going even further…nothing.
Do you have regular pain (more than 2x a week)? How do you cope with this when you are working?
Absolutely. Almost every day. If I didn’t tell you I was in pain most likely you’d never know. (Except my Mom, she always knows!) It ranges from mild to moderate but I usually ignore or tolerate it until pain pills are required. Of course when I can’t control it at home that’s when I take the Emergency Room trip. When I’m at school it’s all about prevention. Usually an extended release or some type of pain medication with lasting effects taken at the beginning of the day helps get me through. That’s the thing about having Sickle Cell, we’re always in some kind of pain but we push on. We have to.
So true. What is your daily medication regimen and what medications do you take when you are in pain?
I take Hydroxyurea(2000mg), Folic Acid(1mg), a B12 Vitamin(1000mg) and an Ibuprofen(800mg) every day. For pain I have Extended Release Morphine, Fast-Acting Morphine and Hydrocodone. Hydroxyurea really does help. I can feel a major difference between me taking my Hydrea versus me not taking my Hydrea. It does reduce crisis, it does reduce hospitalizations & it helps keep oxygen bonded to your red blood cells, which is so important! When I was younger my Mom and doctors practically had to beg me to take my medication the way I was supposed to…NOW I KNOW WHY! If you have Sickle Cell and are not taking Hydroxyurea I encourage you to ask your doctor about it. It has worked wonders for me.
Take your meds Nicole! LOL. How has sickle cell affected your personal life? For example, are you in a relationship, do you have kids, etc.
: ), I am in a relationship right now. We have been together for 7 years and we have 2 beautiful children together. We have a 3yr old daughter, Ny’Asiah and a 1yr old son, Isaiah. I have to say I am so Blessed to have all 3 of them. They are the best kids and he is the best boyfriend.
Wow, congratulations on such a happy, beautiful family. Please tell us about your significant other. How have they helped you with sickle cell? How did your relationship evolve taking into account your sickle cell? When did you tell him/her?
My boyfriend’s name is Isaiah and he is my primary source of encouragement. He believes in me, he doesn’t allow me to have my occasional, ‘I have Sickle Cell Pity Parties’ he makes me want to do my best in everything. Me having Sickle Cell was never an issue for him. I told him early on in our relationship which I believe is the best thing to do in any relationship. He didn’t realize how serious of disease Sickle Cell was until he started being a witness to the pain crisis, hospitalizations and the negatives that comes along with having Sickle Cell. He is naturally smart so he has greatly educated himself for the sake of being with me. Even now he researches vitamins and anything that I could do to make having the disease more manageable. He is a good man to me, a great Father to our kids and I don’t know what I would do without his support. He has seen me through the worst and I am lucky to have someone like him apart of my life.
Isaiah does sound like he was custom-made for you. If you do have kids, please describe in as much detail as possible, how your pregnancy, labor and delivery was. Do any of your kids have sickle cell disease?
First I want to say to any woman reading this with Sickle Cell that wants to have kids of your own one day, please do not let other peoples “Sickle Cell & Pregnancy” horror stories scare you! I was always told that it would NEVER be a good idea to have kids. I was always put down for even thinking about one day maybe being a Mom & having a family of my own. I let others people’s opinions scare me & I believed that me having kids was never an option, which was…until ‘Life’ happened, lol. I’m a regular woman living with Sickle Cell Anemia and I did it!
Here are my stories: My first pregnancy I never experienced any morning sickness, or increased pain. My first 6 months were smooth sailing. I was lucky enough to find an OBGYN that was very knowledgeable about Sickle Cell & she took very good care of me. I had never experienced a doctor who I thought actually cared about me outside of just being another patient. My last Trimester (month 7, 8 & 9), is when the difficulties started rolling in like clockwork. But being a woman with Sickle Cell at 7 months pregnant, it wasn’t anything out of the ordinary. Around this time my body was stressed and starting letting me know it. I did have more pain crisis. I never hesitated going to the ER for obvious reasons. I would end up in pain at home, go to the hospital, be admitted, treated with fluids & pain meds, stay for a week (on average), go back home, be ok for about 2 weeks, end up in pain at home…(& repeat.) This went on for the last 3 months of my pregnancy. It did get tiresome at some point but the fact that I was pregnant with a healthy baby girl out-weighed everything else.
Being pregnant & going to the hospital with Sickle Cell pain is a whole different story, everyone seems to really empathize with you, they go out of their way to get you as comfortable as possible (at least this was in my experience). I had a planned induction which led to a C-Section only because I never fully dilated & the umbilical cord wrapped around my daughter’s neck prevented her from dropping down into my cervix. Yes, I did get an epidural, which went fine. Labor lasted about 2 days, BUT I was kept comfortable the entire time. My doctor ordered around the clock pain meds for me so I honestly still do not know what a contraction even feels like, crazy right? There were never any actual problems with my pregnancy outside of having Sickle Cell, thank God. The C-Section went just fine and before I could process everything I found myself holding MY daughter and realizing…I DID IT! What I was never supposed to be capable of doing, I had done and I was fine.
My second pregnancy pretty much went exactly the same. No morning sickness, no increased pain, smooth sailing first 6 months…and then Sickle Cell made itself known again. Once again my last 3 months went like, pain, hospital admission, home…(and repeat). I never had any other problems outside of having Sickle Cell with my son either. I was hoping to give birth naturally this time but ended up having another C-Section for the same reasons as my daughter. Both of my kids have the SC Trait, we decided to have their Dad tested for the Trait while I was pregnant & he has normal hemoglobin which was a relief! But once again I had done “the impossible”! And so can anyone else who wants to.
Looking at the 14 year old version of yourself, what would you tell him or her if you could…?
Oh my goodness, I would tell that pitiful girl who was probably just getting settled into the “I will NEVER be able to….” mind frame to stop feeling sorry for yourself and do not give up on your future. I’d tell her to take better care of herself, believe in herself and that it is ok to follow your heart and follow what you believe you are capable of doing. I’d tell her she is beautiful and she can live a fruitful life if her heart so desires…Ignore all put-downs and believe in yourself!
Is there anything else that you would want to tell other sickle cell warriors?
I’m at a really happy place in my life, a place I’d never dreamed of being. Sometimes I feel guilty that I seem to come off as almost having a “normal” life with Sickle Cell not being an issue. But I know what the suffering is like, I have been there too many times. I know the embarrassment of crippling pain & not being able to walk. I know the embarrassment of hiding how bad you’re really hurting just because you’re afraid of what people will think. I know the depression of feeling like, why me? I’m just like the rest of you Warriors, the ONLY thing that has changed is my mind frame about having Sickle Cell. I control it, it no longer controls me. I want to be living proof that if you take care of yourself & believe in yourself, you can have a seemingly normal life & be whatever you want to be! No one else would ever be able to go through the pain and everything that we go through, which is why we already have an advantage over so many people. We were born into this world with Sickle Cell Anemia and that is what makes us unimaginably strong. Surround yourself with supportive people, do not let anyone put you down, do not put yourself down, have Faith in everything you do and follow your heart! WE ARE WARRIORS…WE ARE STRONG.
August 2012 SC News Roundup