Wednesday, March 17, 2010

Sickle Cell Rules

On the SCW Facebook page, there is a mention of the rules of sickle cell, and that once you know the rules, you have a leg up in managing your condition and living a wonderfully vibrant life.

The rules are not steadfast, and of course depend on the individual; but it's something that most sickle cell warriors have had to learn, some the hard way. I must confess, that even though my mom drilled most of the rules into me when I was younger, I ended up ignoring; or disobeying them, much to my detriment as I spent days later in a painful crises.

Without further ado, here is my list of Sickle Cell Rules.

Drink water. Water to a sickle cell warrior is the essence of life, health and vitality. Water helps to cleanse your body, flush out dead cells, increases the volume of your blood, thereby reducing the 'clumping' properties of the sickle cells. One cannot have too much water when it comes to sickle cell. I drink 2 liters minimum every day.

Eat healthy foods. Food is the energy source of your body, and you want to make sure your body is performing at it's best capability. Fresh fruits and vegetables are essential, and stay away from fatty foods. My weakness is Curly Fries...not good for me on so many levels, but I find it hard to say no:) Processed foods are high in sodium, and sodium depletes your body's hydration (since it pulls water from the cellular level into the intracellular level, where it is not useful). So cutting down on one's sodium intake is recommended. The fresher the food, the more nutritious...the better for you. Try foods rich in folate like Kale and spinach, as well as thiocynate like beets and carrots. Meats should be lean, but a vegetarian diet is preferred (I learned this the hard way). Eating fatty foods and meat narrows the vasculature of your arteries and veins, thereby making it narrower for the cells to get through, and more prone for a clumping painful traffic jam.

Stay warm. Always have a sweater, jacket or coat with you; especially if you are in a place with unpredictable weather (like Portland). Cold temps leads to vaso-constriction which leads to a crises. The worst crises for me always come when I've been exposed to a cold environment for even something as small as 5 minutes. Hot temps lead to dehydration which can also trigger a crises.

Avoid stress. When you are stressed, your body jacks up on hormones which can lead to a mini crises. Also, you don't take care of yourself when you are stressed, and this can compromise your immune system etc.

Avoid infections. Infections can be the harbinger of worse things. A simple cold can turn to an upper respiratory infection or acute chest syndrome...all complications that sickle cell warriors want to avoid at all costs. So if you see someone coughing, or sneezing please practice good hygiene and avoid sucking face with said person. I once caught the flu from my fiance that led me to the hospital for 2 weeks. He was fine 3 days after he had it.

Travel smart. Flying, diving, road trips etc. all must be done with a degree of caution and understanding of your body. Drink, stretch, pre-medicate and you should get there safely and without pain.

Rest! Sometimes, I ward off a crises just by drinking, taking some meds, and going to sleep. A solid rest will rejuvenate your body, give you strength, and even ease the pain away while asleep. I don't know the etiology of this, but for mini-crises, nothing works for me better than sleep.

Listen to your body. Sleep when it tells you to sleep. Remember, pain does not always have to be a portent of doom, but just a friendly reminder from your body that you are pushing it too hard and need to slow it down. You know your body best, so treat her/him well.

Go to the doctor. I know that many of us (myself included), abhor doctor's visits.  But this is a necessary evil, to update your immunizations and vaccinations, get your lab work drawn and stock up on your meds. Also, the doctor has your medical history, and a good doc knows how to pre-screen you for complications before they arise.

That's all I can think of right now. What are your Sickle Cell rules?


Becky said...

Thank you for sharing this critical information. It is one thing to read it in literature from the hematologists office, and another to hear it from one who has LIVED it.

Anonymous said...

These are very useful insights for us moms....