Mortality and Sickle Cell Disease

On the Sickle Cell Warrior Facebook page, somebody recently asked, "How do you hang on to hope and faith when we are constantly reminded of our own mortality?" I thought it was a good question and felt like talking about it.

People who are healthy from birth generally have a sense of invulnerability; they tend to feel they will live forever and nothing can harm them. Often, it's not until later in life--40's or 50's--that they come to the realization that they can be hurt, they are in fact mortal, and will one day die.

When you are live with Sickle Cell Disease the opposite is true. Between the constant hospitalizations, chronic pain, and all the complications that come with this illness, you learn at a young age that you can be hurt and you are very much mortal. It can affect one's psyche in deep and profound ways.

I know in my life I have, at times, felt:

• Cheated out of a "normal" life; 

• As though I am missing out on fun and good times with friends;

• Like my life is going to end much sooner than my friends;

• Depressed about my circumstance;

• Angry about my limitations;

• Helpless and a slave to my body;

• Hopeless that things will ever improve;

There were times in my life when many of these fears and frustrations crippled me from having hope and ambition. Depression and suicidal thoughts plagued my life through most of my 20's. Antidepressants have, at times, played an important role in my mental health. But mostly, the source of my greatest hope, is and has always been my faith.

Aside from my religious convictions, there is much I do to combat the negative thoughts and feelings that can easily crop up. For me, keeping my mind busy is of HUGE importance to my mental, physical, and spiritual health.

• Finding new hobbies;

• Serving in my church and helping other people;

• Completing and starting new projects;

• Reading and writing;

• Setting goals;

• Meditation;

• Discovering new ways to challenge and expand my intellect;

• Finding wholesome activities that allow me to grow as a person;

These are the many of the things that help me counterbalance the negativity my illness brings into my life. My faith in Jesus Christ and other religious views are what infuse me with hope. For me, faith in a Higher Power is only part of the recipe. I also have to have good things to occupy my time and good people to help add fulfillment to my life. 

Whether you live with an illness or are healthy, nobody knows how much time they have on this earth. So do your best see the beauty in your life. Gravitate towards good things, and good things will happen.

Living a happy life with Sickle Cell Disease can be a challenge, but it is achievable. 

Healing Energies and Sickle Cell Disease

For the past two months I have been feeling more awake, alert, physically energetic, and overall better than I have in more than three years. I feel as though a fog has been lifted from my mind and a weight lifted off my body. I want to share with you what I’ve been doing differently, so please, keep an open mind.

Though modern medicine has kept me alive for 42 years, I do believe there is value in: acupuncture, acupressure, Eastern medicine, healing energy, and other alternative medicines. Meditation, for example, is a powerful tool in my life that allows me to manage my pain and reduce my stress. About two months ago, I read the follow books:·    

•  “Chakras: Awaken Your Internal Energy” by Veronica Baruwal
• “5-Minute Chi Boost – Pressure Points for Reviving Life Energy, Avoiding Pain and Healing Fast” by Sifu William Lee.

The first book talks about the seven energy points in your body called chakras. Among other things, the author details where these chakras are located and how to stimulate them through meditation. The second book is basically an eighty-page instruction manual on how to stimulate various pressure points on your body. The author describes how to slap and/or tap various pressure points, thus allowing your body’s energy (Chi) to flow properly. In both these practices, it’s believed that proper energy flow can have positive and profound affects on the mind and body.

After reading these books, I decided I had nothing to loose by trying it. So I began meditating for about fifteen minutes each morning in the manner suggested in “Chakras: Awaken Your Internal Energy.” After meditating, I took the necessary time to perform the acupressure routine described in “5-Minute Chi Boost.”

Following this routine for about two weeks, I woke up one morning feeling GREAT! After a couple days of feeling amazing, I began asking myself, “What am I doing differently?” Apparently I’m not too bright because it took me awhile to remember.

It has now been almost two months since I began the daily routine I described above. I do my best to not miss a day; and when I do skip a couple of days, I begin feeling poorly again. I have been, and continue to be, amazed at the monumental difference in how I’ve feeling by spending 15-20 minutes a day doing these simple practices. It is nice to feel like myself again. It’s nice to be energetic and have a clear mind.

I know some people will probably think what I’m experiencing is a “placebo affect” or the power of suggestion. If that’s the case, so be it. But I truly believe these simple exercises are what has made such a profound difference in how I feel.

My purpose in sharing this is to help other people open up to the possibility. If chakra meditation and acupressure stimulation has worked to improved my health, maybe it can work for you too. When you live with a chronic illness, I feel it's important to be open to other methods and remedies. After all, what harm is there is trying a new practice to see if it helps improve your health?

Managing a Sickle Cell Pain Crisis

For the past fifteen days I have been in a sickle cell pain crisis. People who aren’t familiar with the illness ask, “What does a pain crisis feel like?” I usually reply by saying, “There are many degrees of severity of pain crises. To help convey this in terms people can understand, I compare a crisis to the weather. Sometimes it’s partly cloudy with a light mist of rain barely noticeable on your skin. Other times it’s a monsoon; there’s roaring thunder, steady lightening, 100mph winds, and a down pour of rain so heavy you can’t see in front of you. And there is everything in between.

“Light mist” pain crises feel like faint pain all over my body that causes me to feel achy, sluggish, and tired; kind of how you feel when the flu is coming on. When it’s a “monsoon” pain crisis, it feels like a million tiny needles are trying push their way through every inch of my body; and with every heart beat, those needles go in, and out, in and out; and with every breath, they go in and out, in and out. It hurts to move or even be touched in the slightest of ways.

So what helps? When I’m having a monsoon, or near that level of pain, I do the following things. 

1) Hydration. I increase my water intake. Hydration is really important in Sickle Cell Disease. So I set a timer every 30 minutes and drink half a glass of water (about 6oz). That way, by day’s end, I will have drunk well over a gallon of water.

2) Oxygen. When I sleep, my blood oxygen level drops to 70%. As a result, I use oxygen at night when I sleep. It’s an “oxygen concentrator;” a machine that converts the air in the room to the quality of pure oxygen. When I’m having a monsoon crisis, I use that oxygen 24/7, and it helps. Sickle cells block the flow of blood and oxygen, so having this additional oxygen is beneficial.

3) Be still. I stay home and do as little as possible. When it’s a monsoon pain crisis, it’s impossible to do anything anyway. When the crisis is less intense, I still know when I need to stay home and be quiet. Physical activity will only make the pain worse and risk hospitalization.

4) Pain medication. I might have to increase the amount of pain medication I normally take. Obviously I am careful not to overdose, but I know what I can take and when. Sometimes, when it’s monsoon season, home prescription pain medicine does very little to relieve the pain and the only thing I can do is wait out the storm.

5) Stay warm. Sickle Cell patients are highly temperature sensitive. Extreme temperatures—be it hot or cold—can trigger a pain crisis or make a current crisis worse. When in crisis, I wear warm clothing and often have an electric blanket on me. Staying warm during a crisis is very important. 

6) Meditation. I use various meditation techniques to slow my breathing and regulate my heart-rate. Getting excited, emotional, or panicking during a severe crisis will only make the pain worse. Staying as calm as possible is HUGELY important.

7) Know when it’s time to go to the hospital. From experience, I’ve learned when my body is telling me that it’s time to go to the hospital. In all honesty, I can’t remember the last time I had to go to the hospital because my pain was so out of control that I couldn’t manage it home. Nearly all of my hospitalizations over the past 20 years have been due to low hemoglobin levels or other types of illnesses. Most of the time, I just deal with the monsoon in the comfort of my own home and bed.

How Long Does a Pain Crisis Last? The short answer is, anywhere between less than a day to months. Monsoon level pain crises usually last one or a few days. “Light mist” crises...they can last days, weeks, or even in my most extreme case, a whole year.

My present crisis for example: on Saturday I felt fine. Sunday morning I woke up having a mild-moderate crisis, which progressed to a monsoon within a period of four hours. Monday and Tuesday it was a “light mist.” Wednesday it was one step below a monsoon. Thursday thru Friday it was a light mist again. Saturday was a step or two below monsoon. Sunday and Monday, back to a light mist.

I have said it before; the only thing predictable about Sickle Cell Disease is its unpredictability. We can be fine one minute, and in agony the next. The most important thing I can say to a friend or family member of a Sickle Cell patient is, be patient and be understanding. Those two things go along way at helping your loved one’s stress level.