Managing Sickle Cell Disease

Last week I had a couple of doctor appointments. Both doctors asked me a very similar question. "In the whole time I've known you, you've not been hospitalized with a pain crisis. How do you manage your illness so well?"

I first asked, "What do you mean when you say 'pain crisis'?"

"Pain that is so out of control that you have to be hospitalized."

This is what I told him. First, I'm not employed. So not having the emotional and physical stress of having to go to work every day plays a huge role in staying out of the hospital. I also do my best to avoid stress. Prolonged intense stress is a certain trigger for a pain crisis.

Secondly, I do my best to drink as close to a gallon of water each day as I possibly can. When I fail to drink enough water for prolonged periods of time, the result is fatigue and sickle cell pain.

Third, I make sure I eat healty and get the amount of sleep my body needs. For me, nine to ten hours is what my body needs. If I fail to get that for more than a few nights in a row, a pain crisis will descend upon me very quickly.

Fourth, I know my limits and don't push myself. When I was a teenager and in my early twenties, too often I burned the candle at both ends. I would over tax myself by playing and working too hard. The result was frequent hospitalizations. When I gained some wisdom, I learned to stay home when my body told me I needed to.

Fifth, meditation is a valuable and important tool for me. When I do have a severe pain crisis, controlling my breathing, heartrate, and stress play a big role in staying out of the hospital.

Sixth, having oxygen at home also helps. Like I wrote in "Oxygen Use and Sickle Cell," I have an oxygen consentrator. I primarily use oxygen at night when I sleep. But when I'm having a severe pain crisis, I will use it 24/7, often for several days. Having that added oxygen when in crisis helps. This, and all the other things I've mentioned, won't by themselves keep me out of the hospital. But together, every little bit helps.

I put a lot of mental energy into keeping myself healthy. Finding the necessary balance in life between doing the things we need, want, and have to do, can be a struggle. Even when we do find that balance, our illness is unpredictable and hospitalizations still happen; sometimes for no good reason at all.
I hope this information is helpful to somebody. Sickle Cell is a difficult illness to live with. But with discipline and wisdom, it can be managed fairly well. I pray you find that balance in your life.

Red Light: Less Pain from SC Foot Ulcers

So here is a bit of irony for you. Hours after I made my last post stating that I was 90% certain that the spots on my foot would “NOT” become open wounds, they broke open and became open wounds.

Normally once a wound breaks open, the first four weeks—or more—are weeks where the wound continues to grow larger and larger. Then there’s a few weeks or month of it staying the same. Then there is a month or more of healing. Here is the amazing part of this story. This wound is doing something no other wound has done before; it’s already healing!

Three weeks ago, February 17th, 2015, the would broke open. Like I wrote in my previous post, I’ve continued to use my red light on my wound about four or five times a day for at least five minutes each time. I also treated my wound with Manuka honey twice a day.

The first two weeks of my new wound, the ulcer grew slightly larger. Normally they grow significantly larger and are exceptionally painful. With this wound, there has been very little to no pain. That itself is amazing.

Four days ago I saw my wound doctor. He instructed me to stop using the honey and use Santyl instead. [Santyl helps debris the wound from slough.] I followed his instruction like the good patient I am. Three days ago, I noticed my wound was showing signs of HEALING! Today, during my morning cleaning, I noticed the wound showed significant signs of healing. It’s beginning to close and new skin growth is readily apparent.

Never, in the four years I’ve been constantly dealing with these Sickle Cell foot ulcers, has a wound behaved like this one. 1) There has been little to no pain; 2) Never has a wound stopped expanding in a period of two weeks; and 3) Never has a wound begun to heal and begun close three weeks after it broke open.

I am entirely, thoroughly, completely, and utterly amazed by what is taking place. If the healing continues to progress as it has, then my wound may be healed in a week; two weeks at most. It’s flabbergasting.

I am totally convinced that the combined benefits of the Manuka honey and the red light treatments have GREATLY accelerated the healing time on my newest wound. I don’t know what else could explain it. In case you couldn’t tell from my post, I’m super excited by this development. I may have finally found something that not only helps prevent new wounds from forming, but also accelerates healing time on any new ulcer that do form.

I’m quite certain the red light has already helped prevent two other wounds forming. I had suspicious discoloration on two places on my foot. But by using the red light on those spots as frequently as I have, it halted the progress of potential wounds.

I know the red light I bought was kind of pricey; but for me, it has been well worth every penny. If you suffer from chronic Sickle Cell leg and/or foot ulcers, I highly recommend you look into investing in a red light. I will keep you updated on my continued experiences with this treatment and technology.

I’M SO EXCITED!!!