The Dark Diva~My Sickle Cell Dark Side…

There is really no easy way to put in words, the emotional side of “Sickle Cell”. I personally believe it brings me to a place of darkness repeatedly. As I think back when I was a child, and hearing various people, doctors, friends, and family telling me to be careful dont over do it, or I wasnt going to live long, or never have children….etc~

Watching and listening to the nurses while I was laying  helpless in the cage looking pediatric bed talk negative about the little black children with sickle cell and how they wished they would shut up screaming. I even remember a nurse one night giving the kid next to me another dose of morphine just so she would stop yelling and screaming and be quiet and go to sleep. (I am so thankful now that my mother prohibited them from giving me any type of narcotic that would sedate me at such an early age…my organs would really be messed-up by now if she had done so)

Over the years I realized I became negative when it came down to telling me what my abilities was. If anyone, anyone approached me with the attitude of, “You cant”…I would go into this inner rage of, “I’ll show them what I can and can not do”. From teachers who looked down at me since I missed so many days of school, to even my parents and I abruptly moved out their warm, loving, home at the age of 18 and had to move back with my son years later.

Each time I had a violent crisis, dealt with discriminating nurses, emergency room staff, mean-spirited employers & supervisors, un-carrying so-called friends….this, “Dark Side” of My Sickle Cell would appear. Like clock work!! My attitude would turn dark & nasty….my sharp tongue would spring into action and my temperament would sometimes become very short and out of control, and my mind would start to race on how I could prove them wrong of my abilities.

The mere fact of being in a bed hooked up to monitors, oxygen, and a variety of other medical-gadgets, in the beginning left me with an empty, non-emotional feeling. “Blank” on the inside & Out! I was so so so angry about the pain,constant trips to the hospital, the lack of compassion from so many, and the helplessness I experience over and over and over. As the years past I began to recognize this “Dark Sickle Cell Diva”….. Beautiful on the outside but a caged, wild, angry injured soul on the inside.

Understanding the mental, emotional, & physical side of Sickle Cell was not a priority back in the 70s…Just keeping the children alive so they could make it to adulthood was. Eating healthy, and healthy living did not play a significant part til the late 80’s early 90’s.

Over the years I have come to understand the big picture of living with this genetic blood disorder. And realizing it has driven me to be overly aggressive in life at times, cold, distant, angry, detached, and extremely independent!! In the past I have even been called, “Evil” by a very close family member….and in all honesty I know for a fact if they and the rest of the people out there  experience pain on a daily basis like most of Us with sickle cell does, their disposition would not be sweet like honey.

It is not easy having a pleasant disposition and live with sickle cell anemia, constant pain, constant negativity surrounding sickle cell, the ups and downs of having the ability to get things done for it to be taken away from you in one night of sleep or something simple as grocery shopping or a  family outing. The roller coaster of tiredness and lack of energy. Living with the constant fact of, “Death” as a next door neighbor staring out the window at you…..”waving”~

So although I blog about healthy eating, and positive resources and encouragement, I to have a “Sickle Cell Dark Side” which I am not totally proud about but have come to embrace it and understand it and somewhat taken control of it….well I’m a work in progress~

((Final thought: Sickle Cell Pain is actually Hell on Earth))

Copyright ©  2011

Emergency Room Tip!!!

Many of Us whom suffer from sickle cell takes a great deal amount of trips to the emergency room. I have found it beneficial for myself over the years to take my own blanket, comfortable socks, easy access clothing so the staff can do what they need to do but I stay warm in the processes, and most important I do bring my medication that I am on so the medical staff knows exactly what I’m taking and the dosage, but…..

I keep several pain pills in a small silver case in my pocket because …..1.) they meaning the medical staff can be slow as molasses and take forever to get things rolling while you are waiting, and 2.) I like to control my pain and sometimes after I have had their meds for a few days or hours, I slowly like to take myself off of theirs so I can get home, and if I am still feeling just a little discomfort I still have my own with Me. (( This works for ME, I can not say this will work for everyone)).

Now on my last visit, they took my entire case of medication I brought with me and locked it up in the hospital safe. So its important to keep some on you if your hospital has the same policy and procedures.

Also like to keep my small silver pill case handy when I leave the house at all times, I dont always have the patients to dig for a pill bottle while I am in a crises or not feeling 100%~~

Copyright © 2011

What Are”Electrolytes”?? & What Do They Do For Me??

Having sickle cell, “My” body is lacking so many components and I am always thirsty and gasping for more air to flow through my body. As a young child I was always told my electrolytes are low due to my sickle cell anemia. So during school, college, having my children I would grab some Gatorade to quench my thirst, but as I got older I went on a quest to find something with not so much salt, colors, dyes, and I came across, “electrolyte enhanced Water” while shopping at my favorite spot, “Trader Joe’s”. ((Which is only $.99 for a 33.8FL.OZ)).

Since I speak so much of it on facebook and in my blog I thought I would give you some 411 on what it is and what it does:
Electrolytes are important because they are what cells (especially nerve, heart, muscle) use to maintain voltages across their cell membranes and to carry electrical impulses (nerve impulses, muscle contractions) across themselves and to other cells. Kidneys work to keep the electrolyte concentrations in blood constant despite changes in your body. For example, during heavy exercise, electrolytes are lost in sweat, particularly sodium and potassium. These electrolytes must be replaced to keep the electrolyte concentrations of the body fluids constant.


My cells struggle to get from one point of my body to the other due to having sickle cell anemia, and low blood means low oxygen…so when I drink the enhanced Electrolyte water I do feel a difference as to drinking just regular water. I do feel my body waking up and wanting to get up and go.

One of my favorite things to mix with my water is an organic juices (Mango, Apple, Papaya, Pear) and sip on it through out the day. Or just drink it by itself. I am always looking into what are the things my body needs to function better!!

Mothers of Children with Sickle Cell Anemia~

Hello Parents, Mothers, Fathers, Step-parents,  Grandparents, Uncles, Aunts, Sisters & Brothers….of children living with Sickle Cell Anemia. I had a few thoughts on this topic today and wanted to catch those thoughts on my blog. For those who have small children living with this genetic blood disorder, their younger years is vital to implement  in them, “Healthy Living”..Drinking a lot of water, herbal teas (caffeine free), eating fruits & vegetables, Staying away from sodas, sugars, fast foods, heavy meats & meals. Teaching your young child to eat healthy and maintain sensible activities that will not over exert them, healthy fluids, supplements & pain meds, will take them into their adult years with a solid foundation of who they are.

Understanding when to rest & when to play at an early age will help your children grow up listening to their bodies on a regular basis. Learning how to give detail adjectives when pain hits. When tiredness sits in and when not feeling 100% is hovering around.

Explaining to them that there are 1000s of other little boys and girls that live with the same thing and they are not alone. Going to the library or searching the internet helping them understand what their cells are doing can be helpful.

And last understanding the basic Sickle Cell vocabulary, such as ((Folic Acid, Fetal Hemoglobin, Spleen, Stroke, Transfusion, Painful Events, Blood Count, etc…))

Start educating your child about their bodies early makes them strong adults~

Winter Time Must Haves!

Here are just a few of my “Winter Must Haves”….
*Trader Joe’s Electrolyte Enhanced Water
*Fiji Natural Artesian Water
*Zico Natural Pure Premium Coconut Water
*Trader Joe’s Lavender Body Oil
*Trader Joe’s Moisturizing Cream Extra Dry Formula
*Extra Strenght BenGay
*Cocoa Butter Body Butter Extra Rich Cream
*Blistex Lip Medex
*Lip Butter
*Super Cayenne Herbal Supplements
*Pill case(7 day count)

These are just a few things I use to help me get through the winter. Due to the simple facts those with sickle cell needs extra moistuer, “Inside & Out”…keeping water & moisturizing items very close by, really helps my skin from getting dry, cracked,& dull due to lack of healthy cells.Keeping my supplements & medication organized on a weekly basis also makes things a lot easier to maintain and keep track of.

Plenishing my body inside and out with items that makes my body move, function, and feel strong is a seasonal must!!

Coconut Water 101

Most people living with sickle cell have no idea that “Coconut Water” can just about instantly hydrate you when you have reached the point of dehydration…
Some of you even reach for the sports drinks or your favorite sugar filled substance. But for me Coconut water has been my #1 choice to hydrate my body in a fast way. So with that said here is just a small glimpse as to what the health benefits are…

Health Benefits of Coconut Water
“It’s a natural isotonic beverage, with the same level of electrolytic balance as we have in our blood. It’s the
fluid of life, so to speak.” In fact, during the Pacific War of 1941-45, both sides in the conflict regularly used
coconut water siphoned directly from the nut to give emergency plasma transfusions to wounded soldiers.
Most coconut water is still consumed fresh in tropical coastal areas – once exposed to air, the liquid rapidly
loses most of its organoleptic and nutritional characteristics, and begins to ferment.
• Coconut Water is more nutritious than whole milk – Less fat and no cholesterol.
• Coconut Water is more healthy than orange juice – Much lower calories.
• Coconut Water is better than processed baby milk – It contains lauric acid, which is present in human
mother’s milk.
• Coconut water is naturally sterile. Water permeates though the filtering husk.
• Coconut water is a universal donor. It is identical to human blood plasma.
• Coconut Water is a Natural Isotonic Beverage – The same level that we have in our blood.
• Coconut water has saved lives in 3rd world countries thru Coconut IV.
“Coconut water is the very stuff of Nature, biologically Pure, full of Natural Sugars, Salts, and Vitamins to
ward off fatigue and is the next wave of energy drinks BUT natural”, according to Mortin Satin, Chief of the
United Nation’s Food & Agriculture Organization.

Over the past few months I have also realized when I began to feel slight sickle cell pain a few cups of coconut water usually stops the crisis…Now please understand I am not stating this will happen to everyone, but it sure couldnt hurt to try it and see what it does for you health wise. So grab you a glass and drink up!! ((Trader Joe’s)) is where I usually stock up on 11.2 sizes~~

This entry was posted in Food.

Read the Ingredients!!!

Hello Everyone in the world of “SickleCellDiva”!!…It’s been awhile since I posted anything and I’ve been working on a very long list of topics over the past few months and for starters I had to put this one out there……
Read the fine print
Always read the ingredient labels. Ingredients are listed in order of amount by weight. If the first three ingredients contain any of the following, you might want to re-think purchasing the product: salt, monosodium glutamate (MSG), hydrolyzed vegetable protein, free glutamate, yeast extract or autolyzed yeast, sodium nitrate or sodium nitrite, lard, hydrogenated oil, palm oil or palm kernel oil, vegetable shortening, sugars and high fructose corn syrup (HCFS).
Living with sickle cell I just cant stress the importance it is knowing what you buy to put in your body on a daily basis….so flip the back over on whatever it is your about to put in your shopping cart and get to reading…Stay Sickle Cell Smart & Stay Healthy~

This entry was posted in Food.

Handicap Placard~

Seventeen years ago I pulled into Target and parked in “Handicap” parking. As I was unloading my son from the car into the shopping cart a car pulled up and yelled out, “Your Not Handicap Idiot” …I’m calling the police!! I smiled …held up my placard, and proceeded to go shopping.

People think you must be in a wheelchair, or “Look” like you have some form of a physical-showing of disability. Thats just proof of the many small minded individuals that dwell on this planet.

For those that don’t know if you have sickle cell anemia you qualify for a, “Handicap Placard”.

You can get a DP placard or DP plates if you have impaired mobility and a licensed physician, surgeon, physician’s assistant, nurse practitioner, or certified nurse midwife certifies your condition. You may also qualify if any of the following conditions exist:

* Heart or circulatory disease.
* Lung disease.
* A diagnosed disease or disorder that significantly limits the use of lower extremities.
* Specific, documented visual problems, including low-vision or partial-sightedness.
* The loss, or loss of the use, of one or both lower extremities or both hands.
This just names a few qualifying conditions…..

All Department of Motor Vehicles carry the forms to bring to your physician/doctor. So if you dont have one go get One!!

Copyright © 2011

Tolerance is not an Addiction~

Its been awhile since I blogged but “life” has been moving at the speed of light for me and the time to put all my thoughts in the blogging world has not been a priority however going to the hospital last month dealing with uneducated hospital staff has moved me to return and share my thoughts.

This is actually a small section from my All things sickle cell book but I just wanted to share a portion of my thoughts.

There are thousands of medical staff, doctors, nurses whom just can not and do not understand that an “Addiction”…a physical & psychological dependence on a drug but have no real need for it…DOES NOT apply to all in the sickle cell world.

They often assume just because we are in the emergency room, crying, yelling, not being cooperative means we are there for drugs….We just want the pain to STOP!! By any means necessary!

What the medical world needs to know the majority of Sickle Cell Patients have built up a very strong “Tolerance” to most pain medication as well as certain doses. Now combine that with pain that is so horrific there are just no words to explain the invisible monster in our veins.

It’s important to understand having a tolerance for medication does not make a person an addict. Due to lack of knowledge of the sickle cell world this mistake happens way too much. Trying to explain this to a medical staff member during a full blown sickle cell crisis is not always easy to do. However once I am fully recovered I do make it a point to go back to whomever made the mistake and let them know…”TOLERANCE IS NOT AN ADDICTION”~
Copyright © 2011

It’s A New Year…& A New Me 2011

Hello to all in this overflowing blogger world as well as the ever-growing facebook community. I am so amazed just how fast 2010 flew by. The turns and twist it took was exactly like a roller coaster last year. The never ending knowledge I received on health, family, life, & the value of each was a lesson I will never forget.

I watched my body go from always tired, on the boarder-line of pain today …Oh no pain tomorrow….to craving certain organic foods on the regular..

Taking a close look at ME! My life..My World …the foods and drinks I put into my body daily and at night…

The many many pills it takes to manage my Sickle Cell…

The endless closet of clothes to regulate the correct body temperature …ever so careful not to dress wrong and get thrown into a sickle cell crisis…

The people I am in constant communication with….

The love I give ALL seven of my children….

With all this being said, my pain is less, my blood count is up, my tiredness is more clear and understandable. What I put in my body…food & or Meds is 100% clear.

My clothes are the warmest they have ever been..

And I am so looking forward to this New Year with this New ME!!And apply..sharing..and networking all that I have to offer in the Sickle Cell World~

Copyright © , 2011