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Warrior La’Veda Page: Part 2

La'Veda La and her family

In part 1, La’Veda talked about her childhood, her full work schedule, older brother’s tragic passing and how this helped forge her spirit. Read part 1 HERE.

You are busy, busy, busy! How do you manage SCD and still maintain a thriving career and life? I have been since the age of 20 receiving blood transfusion every 3 months. It is a time of rejuvenation but also it can be the lowest time for me. I struggle to sing or stand or be mentally present when my blood is low. So I schedule my hospitalizations. I have to go after the big events and before the big events. If I am about to begin a tour or sequence of shows I wait until the rehearsals are done and if need be the same night I’m going in. This way I can get out quickly before I’m missed and have the energy and fortitude to give a grand performance. It has been more emotionally draining with my son. He is only 10 months and my first after he was born caused him severe separation anxiety. I leave him with my sister or mom and my husband stays with me. But my son didn’t like my sister for awhile because he associated my leaving wiht her arrival. I just try not to Demerol out so far that it takes me longer to get back to him.
Your whole family has got your back! With the frequent blood transfusions, have you had issues with iron toxicity? Iron overload is an issue that I have to deal with now. My ferritin level is around 4,600 which is far above the normal of 12-150 ng/mL (nanograms per milliliter) for women. I have been prescribed Exjade, an oral chelation therapy drug to resolve the heavy metal toxicty but am extremely reluctant to take it until I feel based on my research that it is the best option and I’m talking to God about it too. I have been studying natural chelators such as arginine but the dose has to be adequate to begin pulling the iron out of the body. Natural supplements are too difficult to know how much you’re actually getting. I’m on a blood thinner due to pulmonary embolisms I had some years ago which is contraindicated with Exjade. It can cause a host of terrible sometimes irreversible side effects. I have a lot to consider. If I don’t do something about the iron it could potentially cause my organs to solidify and many other complications.
Your son is so adorable! Did you have a complicated pregnancy/delivery process or did sickle cell give you any hurdles with your pregnancy? My pregnancy was very difficult. I only gained ten pounds the entire time; I developed pre-eclampsia, gestational diabetes, and was on bed rest for 3 months. I still had to deal with plummeting hemoglobin levels, have transfusions, and take two shots in my stomach a day to keep my blood thin. My body was not sufficient an environment for my son and he was not getting adequate nutrition, oxygen, or blood flow. He was a fighter though and he made it. I spent the last month in the hospital and at 34 weeks the doctor did not want to risk me beginning contractions because he probably would not have been able to tolerate any upsets in his already precarious environment. So they did an amniocentesis to check his lung maturity gave us steroids to increase his lung capacity and took him 6 weeks early by caesarian section. I saw him for the first time 24 hours after he was born and he weighed a tiny 3 pounds. his right ear canal is closed and the bowl of the ear is underdeveloped. He stayed 3 weeks before they kicked him out for being soooo feisty. I tell people if he wasn’t as determined and deliberate and even demanding as he most definitely is he would not have made it. I lost 2 before him. My husband and I are committed to directing rather than breaking his strong will because we know he’s gonna need that tenacity one day.

What a great parenting philosophy. I’m sure that your son will grow up to be a fine, upstanding man. Switching gears, have you noticed a difference in how your coworkers treat you once they know you have SCD? Yes. People try to tell me how to take care of myself which I detest. I know they mean well but SC is not something I take lightly. I study about every procedure and every medicine and every complication, every possibility. So I don’t talk about it much because I do understand they mean well.
What advice would you give to someone wanting to join your profession that has sickle cell?
Trust God, push through. Purpose is life.
Has sickle cell limited any areas of your life? Yes it has. I am blessed to be a creative artistic self employed person. I remember the stretcher coming into IBM and taking me out. Needless to say I didn’t like that look and it became a frequent occurrnece. I know that stress, climate, my physical state at any given time can cause severe disruptions in plans, work, travel, pregnancy. But I do my best to give my all. I complain less now that I’m a mom and I just get it done, If I can’t today, we’ll try again tomorrow.
When you do reach obstacles in your life, what helps you through it? My son and my husband help me mentally and my Faith helps me Spiritually and my sense of purpose helps me emotionally. A Bible passage that helps me through hards times is: 

2 Corinthians 12:9 -And he said unto me, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me. (Still working towards the “glorying in my infirmities” part. lol)
Do you have regular pain (more than 2x a week)? Oh no not even close. Only when my hemoglobin drops and that’s about 3 months between hospitalizations.
How do you cope with this when you are working? I stop working and give myself time to heal.
What  is your daily medication regimen and what medications do you take when you are in pain? Aleve is good, Hydrocodone is better but it keeps me nauseated.

Time to get all gushy and romantic…How did you meet your husband? Anthony and I met during one of a trillion events that he has coordinated. He is an acting coach, director ,and arts advocate. I had a 3-hour radio show every Saturday and I interviewed him for his upcoming event. I was also performing a skit at his event and had to model. A few days later I called him and left a message telling him how absolutely grand it was and he called back. I said “Hello?” and he said, “Will you marry me?” We’ve been inseparable since.

Awwww, that is so sweet! He knew right from the beginning *sigh* How does Anthony help you manage your sickle cell? He didn’t always understand and said once that basically I should get over it because it was only physical. After seeing the trials that no one would ask for he knows better how to hold my hand through it. That’s really all he can do. He feels better if he camps out at the hospital with me until “we” can go home. He realizes the demand being a mommy puts on me. I told him its like ever since Jahbe was conceived he and I have been greedily drinking from the same half full glass. There’s not enough in it for him and there’s not enough in it for me. So Anthony takes the baby when I need rest and is the infinite “laundry doer”. He’s my ace.

I’m sure every single warrior reading this is praying for his/her ace. How has sickle cell affected your personal life? It has made me much more thoughtful towards others and about how and why I use my physical resources. I make everyday the best day I can with my family and reassure them of God’s plan for our life. I definitely let them know that my life energy is on the increase.
To me it sounds like sickle cell has made you more aware and present. Looking at the 14 year old version of yourself, what would you tell him or her if you could…? Find in yourself the tenacity to get through the hard times. Be determined to succeed. You can do this.
Is there anything else that you would want to tell other sickle cell warriors?
Don’t be passive if you have something to say. I have had nurses and even doctors ask me medical questions because I demonstrate a depth of knowledge about what concerns me. Be educated and advocate for your best health.
Thank you La’Veda for sharing your life and your experiences with us. Keep on living your dreams! You are one awe-inspiring lady! Congratulations on all your achievements and stay blessed.

 

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Sickle Cell Warrior

Sickle Cell Warrior

Tosin is dedicated to perpetuating healthy and positive messages about sickle cell. Although sickle cell is a subject often taboo in the communities this condition is most prevalent, Tosin's message is that sickle cell is not something to be ashamed of and you can live a rich and fulfilling life with sickle cell. Sickle cell warriors are the most amazing people in the world, with a great fortitude for compassion, willpower and strength.

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