Cold Weather and Sickle Cell

It’s impossible for anyone other than Sickle Cell patients to understand how powerfully temperature, and weather, impacts our life. I cannot number the times when I’ve been entirely pain free, and either walked into a cold room or out into cold weather, and instantly had a wave of needling pain wash over my entire body. [And I’m not talking about the kind of pain that comes from your parents needling you about cleaning your room...I mean the pain of a million needles being jabbed into every square inch of your body.]

Then there have been those times when I froze in an air conditioned room for 30-60 minutes; and that short time of temperature discomfort caused a pain crisis that lasted not hours or days, but weeks. Yes, being cold for thirty minutes can cause physical pain that lasts weeks!

Some people say, “Just cover yourself up with a blanket.” But those people are ignorant of the fact that, though I may be moderately warm underneath a blanket or coat, the cold air surrounding me can still trigger horrendous pain. To ward off a cold triggered pain crisis, not only do I personally have to be warm, but the air around me has to also be warm. Obviously, we can’t always control what the temperature around us is set at. So the best we can do is think ahead about where we are going and try to anticipate what the temperature may be like there.

When I go to the doctor, I always dress warm and take a coat, even if it’s 100º outside. The same is true for the movies, church, and anywhere I go where I cannot control the temperature.

At church, some people loving tease me when they see my with my Sunday blanket during the summer. They might say, “Jon, is the air conditioner making you cold or can you just not leave your blanky at home?” Fortunately my church family know what my health issues are and do not judge. But to some degree, taking care of yourself means not caring what people think.

¶ PARENTS: On behalf of your children, please, please, be both tolerate and understanding of how important the temperature is to your child’s health. Also, help your son or daughter learn what she/he must do to stay warm, and teach them how important it is to do so.

Something that might help offset the cost of running the air or heater is something called, a “Medical Baseline Allowance Application.” This is a form you submit to you electric company which provides you with a discount on your electric bill. It can save you some money on the electric bill and is something every Sickle Cell household should get.

This form has to be filled out both by the individual and by your doctor. It basically states, due to medically issues, the temperature in your home has to be within a certain range to stay. The form may also indicate that you have medical equipment that needs to be running, like an oxygen concentrator. The application form can be found on the Southern California Edison website. I’m fairly certain other electric companies off similar savings plans.

¶ PATIENTS: I encourage to have the disciple to always be prepared. If you’re too hot, it’s much easier to take layers of clothing off than it is put layers of clothing on that you don’t have. I think one of the reasons why I was hospitalized so much as a child and teenager was because it took me a long time to learn simple lessons.

Many of my hospitalizations as a kid were the result of getting too cold or too hot. With age and wisdom, I learned to manage my illness better. As a result, I have only been hospitalized nine times in the past 20 years! The twenty years before that, I was admitted one hundred and seven times. That’s a HUGE difference. I work hard at staying out of the hospital, and it has paid off.

¶ So in closing I say:
•    Wear thermal underwear; long sleeved shirts; sweaters; coats; jackets; hats; and gloves. No, you don’t have to wear all of these at the same time; unless you live in the Arctic.
•    Try not to feel embarrassed about keeping yourself warm.
•    Whatever you do, don’t join the Polar Bear Club (you know, those crazy people who jump in rivers of ice just for the fun of it).

Until next time my friends...may warmth be with you.