Showing posts with label sickle cell crisis. Show all posts
Showing posts with label sickle cell crisis. Show all posts

Magical Monday Motivation

10003 WARRIOR PROJECT SICKLE CELL MOTIVATION MONDAY



From the funniest man who ever lived...

“As I began to love myself I found that anguish and emotional suffering are only warning signs that I was living against my own truth. Today, I know, this is “AUTHENTICITY”.

As I began to love myself I understood how much it can offend somebody if I try to force my desires on this person, even though I knew the time was not right and the person was not ready for it, and even though this person was me. Today I call it “RESPECT”.

As I began to love myself I stopped craving for a different life, and I could see that everything that surrounded me was inviting me to grow. Today I call it “MATURITY”.

As I began to love myself I understood that at any circumstance, I am in the right place at the right time, and everything happens at the exactly right moment. So I could be calm. Today I call it “SELF-CONFIDENCE”.

As I began to love myself I quit stealing my own time, and I stopped designing huge projects for the future. Today, I only do what brings me joy and happiness, things I love to do and that make my heart cheer, and I do them in my own way and in my own rhythm. Today I call it “SIMPLICITY”.

As I began to love myself I freed myself of anything that is no good for my health – food, people, things, situations, and everything that drew me down and away from myself. At first I called this attitude a healthy egoism. Today I know it is “LOVE OF ONESELF”.

As I began to love myself I quit trying to always be right, and ever since I was wrong less of the time. Today I discovered that is “MODESTY”.

As I began to love myself I refused to go on living in the past and worrying about the future. Now, I only live for the moment, where everything is happening. Today I live each day, day by day, and I call it “FULFILLMENT”.

As I began to love myself I recognized that my mind can disturb me and it can make me sick. But as I connected it to my heart, my mind became a valuable ally. Today I call this connection “WISDOM OF THE HEART”.

We no longer need to fear arguments, confrontations or any kind of problems with ourselves or others. Even stars collide, and out of their crashing new worlds are born. Today I know “THAT IS LIFE”!”
― Charlie Chaplin



Love yourself .

Love Life :)

Lea Kilenga

10 SICKLE CELL BOOKS OF HOPE

Human beings behave in the same way cars behave. When the fuel tank of a car is empty it will not move. In human being hope serves the same purpose as fuel in car. A person without hope cannot live because hope is 99% of our life.

Most warriors get to a point in life when the hope levels have gone down. You need to refuel your hope and continue with this journey. There different hope fuelling stations which can fill the hope gap. One of them is books but not every book can bring hope again. Imagine a car that uses petrol to be fuelled with diesel, it will not move.

The better hope fuelling station for sickle cell warriors is reading books which have been written by fellow warriors or even parents to warriors. This can help you overcome the challenges that have put your hope level down. I have compiled a listed of 10 books every sickle cell warrior must read

S is for Survivor by Saamira Haruna Sanusi
This book is an autobiographical note about the experiences this Nigerian lady went through with Sickle Cell Anaemia and many people are in similar situations without knowing that there is hope. Growing up, life was always about medications after medications, and this life of painful crisis makes one to believe that there is no meaning or purpose to life. It also creates the tendency to feel hopeless and helpless. S through Sickle Cell patient experiences from birth to the time when she had her Bone Marrow Transplant and these experiences in the form of crisis and health complications are familiar with many Sickle Cell patients. These peculiar experiences unknown to the rest of the world tell a success story that shows transformation from SS through genetic engineering to AA (genotype), and therefore permanently SS free. In this book Saamira shares her personal story of experience with the disease and a concrete message; “Sickle Cell Anaemia has a cure and I am a message of Hope”.

Still standing by Toyin Adesola
Still Standing is the compelling and courageous story of a woman’s battle with Sickle Cell Anaemia. This book chronicles the experiences of Toyin Adesola as she battles the traumatic challenges of living with the disorder. It is a story of hope, courage and tenacity that is recommended for anyone who feels life has dealt them a bad hand. It is a story that touches the soul and inspires one to look beyond one’s circumstances

I Only Cry At Night: living with Sickle Cell Disease by P.Allen Jones
Kristina’s review “This book is a great read! It takes you on a journey through the life of a strong willed, ambitious, and humble woman who fought many battles in life ON TOP of dealing with Sickle Cell disease. Throughout this heartfelt story, Jones draws you in with her humanistic writing style, giving readers an opportunity to step inside the shoes of a sickle cell patient and see what life is like while living with this rare disease. This book is an inspiring read and will motivate anyone who has ever had to overcome a struggle of any kind, and felt alone while doing so. It's also very informative for anyone who has sickle cell disease or knows someone who does. I highly recommend it."

Living With Sickle Cell Disease: The Struggle to Survive by Judy Gray Johnson
Review on Amazon “This book is a fluent, informative and candid story of a life filled with a fight for surviving a little-known genetic disease and a fight against prejudice spanning in decades. The author could not win the all battles but she always tried and never gave up. I recommend this book to those who want to learn how someone with a disability can survive and manage a productive and bold life. It is also a must read book for sickle cell patients who want to deal with both the disease and poor bedside manners.”

Sickle Cell Natural Healing: A Mother's Journey by Tamika Moseley
After spending every three months of her new-born’s life in the hospital managing his sickle cell disease, Tamika Moseley knew she had to change what she was doing or the hospital would be her second home. In this deeply personal book, Tamika shares her story of the difficult journey she took to find natural ways to treat her son's debilitating disease. Three years since she started using herbs to minimize his sickle cell crises, her son is living a normal, healthy and pain-free life. Whether you have sickle cell disease or the trait, this book will show you what your body needs and how to treat your symptoms so that pain is no longer a part of your vocabulary. As Tamika likes to say, "Knowledge is power" Sickle Cell Natural Healing: A Mother's Journey gives you the benefit of the wisdom one fearless and determined mother collected so that others suffering with this disease can thrive.

Sickle Cell Disease 100 Years Later by Dan Moore Sr and Phyllis Zachery-Thomas
A moving account of patients and families dealing with the effects of sickle cell disease, a genetic disorder.

Sickle Cell Anaemia Challenges: Courage to Face Adversity by Willa Boykin
Sickle Cell Anaemia Challenges: Courage to Face Adversity Describes an on the road account of what life was really like as a mother, caregiver and mentor for two of their children born with sickle cell anaemia. It also shares valuable lessons on living a balance lifestyle that includes wisdom. We cannot be balanced at all times, but the book will give you an outlook on character for those who walk in wisdom and those who are not. Love is not love until first it has been given away, and then it can be multiplied back to you. This is accomplished only through obedience.

Meet Camden: Living with Sickle Cell Anaemia by Ishia L. Washington-Gattis
This fun and knowledgeable book is about a 9 year old boy named Camden. He has Sickle Cell Anaemia. This book will show Camden's courage and strength in his day to day life. It will also explain some of the things you may go through if you have Sickle Cell Anaemia.

My Sickle Cell Story by Mariah Lynn Jeanae Roberts
"My Sickle Cell Story "tells the journey of 7-year old Mariah Roberts, as she battles Sickle Cell Disease. While every day is not easy, she remains strong through her faith in God, love from her family, and the hope that one day she will be healed. Mariah explains her sickness, triumphs over surgery, successfully completes her first year of school. It is Mariah's hope that through "My Sickle Cell Story" others like her will be encouraged as they remain strong with their own battle. It takes one to reach one.

Taking My Medicine: Seeing Sickle Cell Anaemia through My Eight Year Old Eyes: One Child's Perspective by Egypt A. Harvey
This book explores the reality of an eight year old child diagnosed with Sickle Cell Anaemia. Taking medication every day is reality and has an impact on everyday life. This book captures the author's personal thoughts and feelings about taking her medicine daily. She feels it is important to share her story with other children diagnosed with Sickle Cell Anaemia.


If you know any book that has helped you to refuel your hope please share it in the comments section. If you have written a book about your life as a sickle cell warrior please share it with us.


Love Life!
Ssebandeke Ashiraf

Sickle Cell Symptom #3 - PAIN

This is a story of pain.
Have you ever been in so much pain that you call out to the gods to take your life?
Well, for 23 years I've been living with this kind of pain.

My earliest memory was of feeling this tightness in my chest. At 4 years old, diagnosed with Sickle Cell Anemia and admitted for Pneumonia, I didn’t know what this discomfort was. Feeling the weight of the world on my chest, pulling and tugging from either side, I could not fully understand why my body was punishing me this way. Breathing was strenuous and uncomfortable, but all I wanted was someone to tell me all will be well, and that I didn’t have to feel this way ever again.
But like the many other Sickle Cell crises to come, I was given a combination of pethidine and morphine, very heavy pain medication that put me immediately to sleep as if the pain never existed. This is the kind of experience Sickle Cell warriors go through. Living in post trauma and constant fear of not knowing when this pain will come and if you'll pull through to the other side of a pain free body.

PAIN - Sickle Cell Crises

Pain episodes (crises) can occur without warning when sickle cells block blood flow and decrease oxygen delivery. This damages the cells in the affected tissue, resulting in the tissue becoming swollen, which irritates nearby nerve endings. People describe this pain as sharp, intense, stabbing, or throbbing. Severe crises can be even more uncomfortable than post-surgical pain or childbirth.
Pain can strike almost anywhere in the body and in more than one spot at a time. But the pain often occurs in the
  • Lower back
  • Legs
  • Arms
  • Abdomen
  • Chest
  • pelvis
  • ribs
  • spine
Most pain episodes do not have an obvious reason for their occurrence.  But here are some possible causes and things that your child should avoid if possible:
  • Swimming in cold water
  • Being out in cold weather
  • Getting too hot
  • Getting dehydrated from not drinking enough fluids
  • Colds and infections
  • Overdoing it—not getting enough sleep and rest
  • Drinking alcohol or smoking
  • Menstruation (getting your period)
  • Stress
  • Being around second-hand smoke 

Treating Pain at Home

Remember:  pain is a sign that something is wrong. Firs identify the cause of pain or the trigger and control or eliminate it. Pain is best treated using a variety of non-drug treatments along with medication
For example, you may need to guide yourself by using relaxation techniques, even if you're already familiar with how to do it. Other examples of non-drug treatments include massage, hot or cold packs, relaxation and guided imagery, distraction, music, food remedies and also reading to yourself. 
In addition one should drink lots of water and take pain reducing herbal treatment and foods.


10003 Natural PainKillers

To all Sickle Cell Warriors, no one can claim to know more pain than you. However I am here to urge you that even though pain is what you leave with, it doesn’t have to dictate the way you live your life. Don’t let the discomfort dull the light in your life and destroy the great parts that make us who we are; our ability to be tender with ourselves and humanity and the clarity to always find hope
I have been able to turn pain into a pillar of strength. By understanding that I am made stronger by it, I use it as a motivator to better my health and life. Pain is a signal and an indicator that the body gives to show us there is something wrong, and we need to heed and listen to rectify that which is causing our bodies to scream in pain.

I have lived 3 years now without severe debilitating pain. I still experience pain here and there but manageable pain. In this journey of ascension to a healthy pain free body, I take care of my physical, emotional and physiological body through what I consume. This is due to consuming a healthy organic and natural plant based only diet, to deliberately allowing high positive wholesome information to be fed into my mind. The conscientious choice of only feeding my body life giving, high frequency and positive energy has kept me medication and hospital free for 3 years now.
Start today, start now.  Uplift yourself by the choices you make. Don’t let pain control the direction of your life, let it be an indicator for making better choices in how you live your life. Take a deep breath and let it go!

Comment below and share what your understanding of pain is and how you manage it.



10003 Pain Quote. Photo Credit: Mutua Matheka