I know it may be hard for people to believe, but I’ve never taken pain medication ever. In dealing with sickle cell, lifestyle matters and through it I believe that I can heal myself.
Living with sickle cell disease (hb SS), I do fairly well healthwise. I’ve been vegan since third grade and wrote a book on nutrition and sickle cell disease and in reality, I’m actually “beyond vegan”. When I say “beyond” it goes beyond food. I live a natural and positive lifestyle. I wear natural fabrics, only linen and cotton. I love music, I think everybody when they see me, I’m the person that loves to dance and move my body. I like nature. I like going to the beach or taking a hike and I’m the type of person that ends my emails with the word “peace”, because that’s so important to me to be able to walk in peace, no matter what it is. This is my lifestyle.
A lot of that has to do with how I manage stress. I believe in breathing and I think a large part is my diet. Also, I am not an anxious person and I pray through everything. I make boundaries and in terms of negativity, I don’t allow that. I don’t want to hear about the blues. Don’t get me wrong, I’m a good listener and I’m a good friend, but when it comes to drama, I don’t engage.
Growing up I was a happy child, but when pain set in I wouldn’t be so happy. I was depressed and felt lonely. I constantly went in and out, in and out of polar opposite emotions because of sickle cell and I remember not liking that feeling.
So I distinctly remember telling God, “If I have another pain episode, take me out. But if you don’t take me out, I need to have joy.” I’m here today and I wasn’t taken out and I have a very fulfilled life because I became determined to have joy in spite of having pain. It’s been like that ever since that day and while I am not pleased when I have pain episodes, they don’t have the same effect as they once did. Life is no longer a roller coaster. I’m living my best life.
Treating Sickle Cell Pain
When I’m in sickle cell pain, I don’t take pain medications, but I take action. I put on a heating pad, oxygen, hydrate, and then I text my friend and let her know that I need prayer. She sends it out to a group of folks. I believe that I can heal myself, so I spend a lot of time just making sure that I breathe through it knowing that I’m going to be okay.
For the sudden pain crises, I hydrate, do my oxygen, heat, and call my physician to go to day treatment and or to be admitted to the hospital. During this pain, I’ll turn on some music but I’m very conscious of the words so I’m not freaking out. I know that if I can just stay calm, I’ll get through it – whether I’m doing it at home or in the hospital. When I am admitted to the hospital, and I guess we’ll call this old school, I get pain medication intramuscularly versus IV.
Now, this is what works specifically for me and I am in no way saying that people shouldn’t take the modifying therapies or medications. I know many warriors who manage their sickle cell in a variety of ways, including use of medications and it works well for them. And so that’s great! I am saying for myself, I do not and I tend to do very well. I will also add this has been a lifestyle for me for a long long time.
I’ve been successful with managing my sickle cell also because of my doctor. One time in the ER, I was receiving such bad care, I told my nurse friend, “I have to find someone else or I’m not going to be alive”. That was a defining moment of literally changing facilities and finding a doctor that loved me, trusted me, respected me, and allowed me to take care of myself in the best way I knew how. I say this to say, the type of doctor and facility matters. It hasn’t always been this way and I was where many other warriors are dealing with the issues in ER, people not believing you, etc. I was there, but I took a lot of time to find the right fit. Now, I hear the nurses telling me all the time how much my doctor loves me and I know my doctor has a lot of respect for me.
How to Implement Changes to Your Lifestyle
For people wanting to make lifestyle changes for sickle cell, I have a psych background, and I use some Alfred Adler principles to guide my way of living holistically. They are:
“Life task” – This can be work or school. Make sure you’re happy in terms of what you do and that you’re doing something, even if it’s volunteering. Being idle doesn’t feel good for anyone.
Next is “social”. This has to do with family and friends and having healthy relationships – this is also where those boundaries come in. I believe I have healthy supportive relationships so that’s important.
Another one is “love”, which atlases as one of the hardest to achieve. I have been married for 24 years now.
The other one is “self acceptance”, which I think is a big big big. There’s a lot of people who have a hard time accepting that they have a disease. They may ask why, they may blame, and for myself, I’ve never allowed my mind to go down that rabbit hole. It is what it is. Yes, I’m the only one in my family (on both sides) that has sickle cell, but for the most part I think that I’m special and I don’t have shame in being able to share with people that I have sickle cell. As a matter of fact I use him as an opportunity to educate.
The last principle is “spirituality” – Adler states that people need to believe in. He didn’t say what that something is; he didn’t specify any particular religion, but this is something I have in Christianity.
Additional tips I would add are for sickle cell warriors to start improving their lifestyle with nutrition. I believe that everyone could benefit from making tweaks in their diet. This means, being more plant based, taking out caffeinated drinks, carbonated drinks, processed food, refined sugars because we already have deficiencies.
I would also say, mental health – just checking in and making sure that everything is balanced and if it’s not, make sure you are tending to that.
Lastly, if a person is in a bad relationship with their medical facility or doctor the way it was for me, it’s time to seek out a better place. It just is. Good doctors exist. It’s time to seek them out.
Learn more about Dr. Rowley: https://cayennewellness.org/dr-carolyn-rowley/
Her Organization – Cayenne Wellness Center: https://cayennewellness.org
DISCLAIMER: This content is for educational purposes only and is not to substitute an individual care plans recommended by their healthcare team. Please note, this is one individual account and does not necessarily reflect everyone’s experience. We recommend all individuals living with sickle cell disease to always seek guidance from their healthcare provider to identify the best treatment options for them.