Sickle Cell Warriors

Articles

 Breaking News

A Little Motivation

Hey everyone,

I just wanted to congratulate you for making it through today. As a sickle cell Warrior myself, I know that having sickle cell can be very hard. Every day is a constant struggle dealing with pain, fatigue, family drama, work responsibilities and just activities of daily living. This is why I call us warriors because we face each day in battle knowing that everything is a challenge.

My very first speech that I gave I remember saying that sickle cell Warriors are the strongest people that I know. It is because of our inner fortitude and strength that we are able to achieve our dreams and live our lives to the best of our abilities. Even if no one notices because they cannot understand what we go through, I want you to know that I noticed and I am proud of you.

You are a beautiful, wonderful, spiritual, intelligent, strong being. The world is so much better with you in it. You were put here for a purpose. It is up to you to find that purpose and achieve that purpose. Whether it is touching someone’s life with your story, helping out a friend or family member in need, or living your life as a testimony for others there is something that you were put here to do.

You are the only person that can do it. No one else can fulfill your destiny but you. Let us find what our purpose is today. I am a great believer in positive affirmations. Even when the chips are down, having something positive that is greater than yourself, that you believe in, and that makes you a stronger person is very essential. My affirmation is that constant belief that I was put here for a purpose.

Please spend some time in reflection and meditation and ask God or the universe, what your purpose is today.

Love and life,
Sickle Cell Warrior.

20120825-204507.jpg

Related posts:

Tags
Share

About Author

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.

Related Articles

3 Comments

  1. Tomeka Ferrigno
    Tomeka Ferrigno November 11, 16:48

    Sure, but please link back to my page, thanks and Happy Holidays.

  2. ChristIsLove
    ChristIsLove November 09, 17:37

    Hi Tosin!

    It’s been really helpful reading your blogs on sickle cell! Thanks so much for your labour and efforts to support and encourage!

    I have a question… My girlfriend has sickle cell. At the age of 28 she’s only ever had two crisis in her life (although she has been admitted to hospital for other reasons like infections and such). We’ve been dating for 9months and for the most part it’s been such a joy. But I find that some evenings, I can’t even reach her! She’d just go AWOL. Completely MIA! She can sleep so easily and I can imagine sometimes a post-work nap can turn into a long sleep, so much so that when I call her in the evening, she’s no where to be found.
    I get so worried and anxious about this when I can’t reach her. Often I get really frustrated too because it seems unfair that she didn’t tell me.
    Is this expected behaviour even from someone with perhaps a milder form of SCD? Can you relate to an issue like this causing strain on a relationship? How do I deal with days like this where it’s frustrating to not be able to check in on a loved one?

    I’d so love to hear from you on this!

    Thanks in advance!

  3. Sickle Cell Warrior
    Sickle Cell Warrior Author January 22, 19:48

    Hello Lobem, I can understand your frustration but let me explain what is going on. Even if you have a milder form of sickle cell disease, you still have less viable red blood cells than a typical person. Red blood cells carry oxygen and sustenance to your entire body. Sickled cells are dying every 10 days, which means that your body is constantly running at a deficit. Normal red blood cells live for 60 to 90 days. However, we tend to have more sickled cells that leave our body running on empty. This causes extreme fatigue, extreme fatigue. Sometimes I am so tired I can’t even get up out of bed. Sometimes I’m not sleepy, I’m just exhausted and have no energy to deal with anyone or anything. Sometimes my phone rings and I’m too tired to even have a conversation. You can’t really understand what it feels like because you have regular energy. The only Time that I ever have an abundance of energy is right after I’ve had a blood transfusion in. To me those days feel like I am the energizer bunny and I feel like I can take on the world. The rest of the time I am just exhausted. Even taking a shower is exhausting. Try to understand what your girlfriend is going through. I don’t think it is because she is ignoring you or does not want to have anything to do with you in those moments. I think that she is just genuinely exhausted, beyond exhausted. I can sleep for 12 hours and still wake up exhausted. It feels like everything I’m doing takes 10 times as much effort when I am having episodes of fatigue. The other factor to consider is the pain issue. When I am in pain I am extremely irritable, things that normally wouldn’t bother somebody bother me because being in pain just takes all your filters away. You are spending all your energy trying not to scream from the amount of pain you’re in and anything someone does or says can really make you upset or angry. I tend to hibernate when I’m having pain like that.She is probably disconnecting because she doesn’t want to hurt your feelings or take out her pain on you. Just respect her boundaries. Let her know that you were there for her and when she is feeling better you are there to talk. Just send her a message filled with love and let her know that you are there. Try not to hold it against her, she’s actually trying to protect you. My husband has been in the eye of the storm many times when I’m in pain and it’s really hard for him.

    Another theme of your post is that you said that she has a milder form of sickle cell disease. I am only hospitalized once or twice a year, and some would consider me having a milder form of the disease. However, I am dealing with chronic pain at home every single day and other issues that I just don’t want to go to the hospital for. For me to want to go to the hospital, I have to be on the point of death. So even though she doesn’t go to the hospital a lot, this doesn’t mean that she’s not dealing with issues at home. Try to get her to talk about her experience so you can understand her better. This will help your relationship to grow. Thank you for loving someone with sickle cell disease. She’s very lucky to have you. Hang in there. Let me know if you have any other questions. Much love. Stay blessed.

Write a Comment

Donate

Support awareness & education for SCD

Announcements

Sickle Cell PSA

From CT Sickle Cell Org---my favorite SCD PSA.

Join the Sickle Cell Warriors Database

Become a warrior. Sign up to be a team leader/member. Get contacted directly by SCW about events and research in your area. YOUR INFORMATION WILL NOT BE SHARED/SOLD TO ANY THIRD PARTIES. (See privacy policy)
Example SS, SC, Beta Thal, Monroe, etc.
You will receive pre-screened research opportunities on sickle cell disease
You will receive info about the sessions on the advocacy training classes
Read more here: http://sicklecellwarriors.com/classes/
* = required field
Interested in local meetups?




powered by MailChimp!

Join us on Facebook!

Archives

Tweets!

have data = false

This is a demo store for testing purposes — no orders shall be fulfilled. Dismiss