I hate storms like these,
When the seconds pass like hours;
When the minutes drip like molasses;
When what felt like a winter’s slumber,
Was nothing more than a quarter rotation on the face of the clock;
When the pain slows every motion to a snail’s pace;
When the trio of analgesics dims the mind,
Bringing the gears of cognition to a grind;
When there’s nothing to do with the whole body discomfort,
But suffer through it.
The dense black clouds that are my sickle cells,
Give birth to the invisible firestorm;
The hurricane inside my frame.
Like a web of electricity, lightning strikes my entire acreage;
Streaking just under skin’s surface looking for escape, but unable to.
It's an unending echo rolling near, far and returning again, and again.
I hate storms like these,
When the seconds pass like hours.
Monday, December 31, 2012
"Week Three" - September 7, 2012
Yesterday marked week three, of my current pain crisis spree.
There’s discomfort in my chest, back, hands and knees,
Thankfully, though, there’s none when I pee.
My patience the pain too often tests me,
Though I know it can do likewise to my family.
There’s discomfort in my chest, back, hands and knees,
Thankfully, though, there’s none when I pee.
My patience the pain too often tests me,
Though I know it can do likewise to my family.
"Blasted Air!" - May 31, 2009
The trembling of my knees,
With the clattering of teeth;
Goose pimples on arms,
Body trembling like a leaf.
With the air conditioner blowing
Sending out an artificial chill,
Always sends me running
For my bottle of pain pills.
When you're born with Sickle Cell,
The cold is a freezing hell.
With the clattering of teeth;
Goose pimples on arms,
Body trembling like a leaf.
With the air conditioner blowing
Sending out an artificial chill,
Always sends me running
For my bottle of pain pills.
When you're born with Sickle Cell,
The cold is a freezing hell.
"Bane" - May 28, 2009
I don’t want to be vain
when I speak of my bane
that is my daily chronic pain
causing aching in my veins
steady as a train
like the pouring down of rain
going against the grain
driving me insane
an ever constant strain
putting me off my game
making me feel lame
everyday is the same
sadly very tame
maddening mundane
because I don’t have a dame.
Maybe it’s time to give my pang a name
so I can flush it down the drain
to be rid of it’s stain
and freed from these chains.
I’d be happy if tomorrow the resurrection came
where immortality reigns
and the glory of celestial flames
forever removes pain from my brain.
when I speak of my bane
that is my daily chronic pain
causing aching in my veins
steady as a train
like the pouring down of rain
going against the grain
driving me insane
an ever constant strain
putting me off my game
making me feel lame
everyday is the same
sadly very tame
maddening mundane
because I don’t have a dame.
Maybe it’s time to give my pang a name
so I can flush it down the drain
to be rid of it’s stain
and freed from these chains.
I’d be happy if tomorrow the resurrection came
where immortality reigns
and the glory of celestial flames
forever removes pain from my brain.
Sunday, December 23, 2012
"Chasm Filled" - August 12, 2006
The empty chasm within now is filled;
The void of space, no longer chilled.
The devouring snarling beast has been tamed,
Though my daily life is relatively the same.
The canyon whose mouth was opened so wide,
Is filled with serenity, bottom to top side.
The darkness thought near my consuming,
Is replaced with light and peace that's ever looming.
No longer is enduring to the end a sentimental joke.
The wanting of self-destruction replaced with brightness of hope.
I find within the past several years,
Authentic laughter has replaced the silent tears.
I give thanks to my Father which guides from above,
Who has sent me peace that fits snugly as a tailored glove.
Through the pain and anguish in my heart,
I feel an unprecedented joy I pray will never part.
For the first time in recollection, I thank God for my life,
Feeling freed from pretense, sarcasm and my fearsome inner strife.
The void of space, no longer chilled.
The devouring snarling beast has been tamed,
Though my daily life is relatively the same.
The canyon whose mouth was opened so wide,
Is filled with serenity, bottom to top side.
The darkness thought near my consuming,
Is replaced with light and peace that's ever looming.
No longer is enduring to the end a sentimental joke.
The wanting of self-destruction replaced with brightness of hope.
I find within the past several years,
Authentic laughter has replaced the silent tears.
I give thanks to my Father which guides from above,
Who has sent me peace that fits snugly as a tailored glove.
Through the pain and anguish in my heart,
I feel an unprecedented joy I pray will never part.
For the first time in recollection, I thank God for my life,
Feeling freed from pretense, sarcasm and my fearsome inner strife.
"Serenity Now" - July 31, 2006
I use to write of the sadness and anger that raged in me,
Telling of the hurt and pain explicitly.
Anguish, sorrow, torment, and tears,
Is all I knew for too many years.
Gloom, depression, despondency too,
This is all I wrote, this is all I knew.
I spoke of darkness, fire, and the raging of a beast,
All describing the torment which my soul did feast.
In so many years of recent past,
Friendships and loves all died too fast.
Again alone, little has changed,
But it’s the thoughts within that have been rearranged.
Peace serenity, and a quietness is stilled;
Contentment, love with enrichment I am filled.
Tranquility of mind and permeating joy,
Completion and satisfaction are now my employ.
The pain, the anger, yes even the hate,
No longer I feel charging at my gate.
I’m grateful for the trials that have brought this to life,
Because gone now is the hurt, pain, confusion and the strife.
Telling of the hurt and pain explicitly.
Anguish, sorrow, torment, and tears,
Is all I knew for too many years.
Gloom, depression, despondency too,
This is all I wrote, this is all I knew.
I spoke of darkness, fire, and the raging of a beast,
All describing the torment which my soul did feast.
In so many years of recent past,
Friendships and loves all died too fast.
Again alone, little has changed,
But it’s the thoughts within that have been rearranged.
Peace serenity, and a quietness is stilled;
Contentment, love with enrichment I am filled.
Tranquility of mind and permeating joy,
Completion and satisfaction are now my employ.
The pain, the anger, yes even the hate,
No longer I feel charging at my gate.
I’m grateful for the trials that have brought this to life,
Because gone now is the hurt, pain, confusion and the strife.
Sunday, December 9, 2012
Don't Be Offended
Now that you’ve decided that letting people know you have Sickle Cell Disease isn’t something to be ashamed of, you might wonder how to talk with people about it. First, understand your friends and family care about you. It’s natural for them to be curious about your health and ask questions. Learning to speak with others about your illness plays a big roll in learning to live with it.
When talking with others about your health, make the choice to not be offended by people’s natural curiosity. Below is a list of the four questions I’m most often asked about Sickle Cell, and how I personally answer them. I could easily choose to be offended by the boldness of some individuals and the questions they ask. Instead, I use that opportunity to educate. As you read this section, think about how you would answer these same questions if and when you’re asked.
When talking with others about your health, make the choice to not be offended by people’s natural curiosity. Below is a list of the four questions I’m most often asked about Sickle Cell, and how I personally answer them. I could easily choose to be offended by the boldness of some individuals and the questions they ask. Instead, I use that opportunity to educate. As you read this section, think about how you would answer these same questions if and when you’re asked.
“How Does Sickle Cell Anemia Affect Your Life?”
This is probably the number one question I’m asked. It’s a little bit like asking the Earth, “How does the Sun affect you?” The answer is of course, “In every way.” In answering this question, I detail some of ways in which Sickle Cell impacts my body and life as a whole. The truth is, unless the person does have, or has had, some kind of illness themselves, they won’t be able to fully identify with what you endure. However, just because somebody can’t 100% relate to what you are going through, it doesn’t mean they can’t be supportive. The companionship of a caring friend can be of great comfort.
"What Treatments Are Available?"
Though I explain treatments such as blood transfusions and various medications help in a variety of ways, for me, preventive medicine is the best treatment. Learning to manage my disease and knowing my limits are generally what keeps me out of the hospital. This is one of my highest priorities in life, doing everything I can to keep myself as healthy as possible: mind, body, and spirit.
"Is There a Cure?"
Currently, there is not a blanket cure available to every single man, woman, and child who lives with Sickle Cell. However, for those who meet the requirements, there is an 85% cure rate for patients that have a bone marrow transplant from a direct sibling who doesn’t have Sickle Cell. A direct sibling means, a brother or sister who has the same mom and dad as you. They can‘t be half-brothers or sisters.
Bone marrow is basically the red blood cell factory of the body. It’s the soft chewy center of the bone where red blood cells are made (I was joking about the chewy part). When a transplant occurs, a certain amount of stem cells—which are immature cells—are withdrawn from the bone marrow of a healthy donor; these cells are usually taken from the hip or harvested from the donor’s blood. . The patient receiving the donor stem cells does so intravenously, much like a blood transfusion. If it’s successful, the patient’s bone marrow essentially resets, allowing their body to produce healthy red blood cells. Simply stated, the factory where the Sickle Cell patient’s bloods cells are produced gets a new operating system. This is an oversimplification of a very complex medical procedure, but you get the idea.
Though there is an 85% cure rate in bone marrow transplant treatment in Sickle Cell patients, there is a 5% chance that it can result in the death of the patient. The remaining 10% survive without the treatment being successful. Due to the risks involved, there are many requirements for the procedure. The patient cannot have any damage to their major organs; they must be under seventeen years old; live with the more severe form of Sickle Cell; and they must have a sibling able to donate bone marrow. All of these requirements make bone marrow transplant a possibility for a very small percentage of patients.
In recent years, there have been successful bone marrow transplants from donors that were not at all related to the Sickle Cell patient. Currently advancements are being made in bone marrow transplants that will make the procedure available to adults as well as youth. Additional research with stem cells is also opening doors to potential treatments and cures.
Dr. Broyles, the founder of the Sickle Cell Cure Foundation Inc., is a researcher whose making very exciting progress toward an inexpensive non-surgical cure for all Sickle Cell patients through what he calls gene regulation therapy. By injecting a protein into the bloodstream, Dr. Broyles believes his treatment will turn off the Sickle Cell gene and turn on the fetal hemoglobin gene; the gene that protects infants and fetuses in their mother’s womb from suffering the affects of Sickle Cell. The foundation is working towards having clinical trials and expect the treatment to be available in the near future. More information about this can be found on his website at www.sicklecellcurefoundation.org.
Personally, I’m very hopeful about future developments toward curing Sickle Cell Disease. Though limited, there is a cure today. This was but dream only thirty years ago. Living with the belief that a cure for all will come in our lifetime, is an important one to have. Maintain that hope.
Bone marrow is basically the red blood cell factory of the body. It’s the soft chewy center of the bone where red blood cells are made (I was joking about the chewy part). When a transplant occurs, a certain amount of stem cells—which are immature cells—are withdrawn from the bone marrow of a healthy donor; these cells are usually taken from the hip or harvested from the donor’s blood. . The patient receiving the donor stem cells does so intravenously, much like a blood transfusion. If it’s successful, the patient’s bone marrow essentially resets, allowing their body to produce healthy red blood cells. Simply stated, the factory where the Sickle Cell patient’s bloods cells are produced gets a new operating system. This is an oversimplification of a very complex medical procedure, but you get the idea.
Though there is an 85% cure rate in bone marrow transplant treatment in Sickle Cell patients, there is a 5% chance that it can result in the death of the patient. The remaining 10% survive without the treatment being successful. Due to the risks involved, there are many requirements for the procedure. The patient cannot have any damage to their major organs; they must be under seventeen years old; live with the more severe form of Sickle Cell; and they must have a sibling able to donate bone marrow. All of these requirements make bone marrow transplant a possibility for a very small percentage of patients.
In recent years, there have been successful bone marrow transplants from donors that were not at all related to the Sickle Cell patient. Currently advancements are being made in bone marrow transplants that will make the procedure available to adults as well as youth. Additional research with stem cells is also opening doors to potential treatments and cures.
Dr. Broyles, the founder of the Sickle Cell Cure Foundation Inc., is a researcher whose making very exciting progress toward an inexpensive non-surgical cure for all Sickle Cell patients through what he calls gene regulation therapy. By injecting a protein into the bloodstream, Dr. Broyles believes his treatment will turn off the Sickle Cell gene and turn on the fetal hemoglobin gene; the gene that protects infants and fetuses in their mother’s womb from suffering the affects of Sickle Cell. The foundation is working towards having clinical trials and expect the treatment to be available in the near future. More information about this can be found on his website at www.sicklecellcurefoundation.org.
Personally, I’m very hopeful about future developments toward curing Sickle Cell Disease. Though limited, there is a cure today. This was but dream only thirty years ago. Living with the belief that a cure for all will come in our lifetime, is an important one to have. Maintain that hope.
“How Long Do People with Sickle Cell Live?”
This last question is one I am generally asked by people who are either particularly close to me or especially outgoing. It’s a topic I’m comfortable talking about and it doesn’t bother me when asked the question. It would be easy to be sarcastic and say, “I don’t know, how long are you going to live?” But sarcasm doesn’t help educate people.
When I was born in 1973—back when I had to walk up hill both ways, in three feet of snow, barefoot, and with nothing to wear but a potato sack—children born with Sickle Cell Anemia in the United States generally lived to be seven to twelve years old. As I have grown up, I’ve watched as that young age increased to be twenty years old, then thirty years old, and up to where it is today, forty to sixty years old. What a joy it is to know, if I live responsibly and take care of my health, that I could live nearly a full life!
If you do an Internet search of, “oldest living person with Sickle Cell Disease,” you will find some inspiring information. In the United States there is a woman who is eighty-five years old; in Nigeria there are references about an eighty-seven year old woman; both are living with Sickle Cell Disease. I have to admit, the first time I read the article about a woman in her eighties who’s living with Sickle Cell, it blew my mind. Think of the hope the life of those two women bring to everyone living with our illness.
Currently I am thirty-nine years old. When I was a child, I never dreamed I‘d live to be the age I am. In this case, what a delight it has been to be wrong, and how thrilling it is to think I could live another fifty years. Living with Sickle Cell Anemia is hard, there’s no doubt about that. Admittedly, there are moments when the complications and pain of Sickle Cell cause me to want to leave this life and cross over to the next; but those are moments, and they pass. Believe me when I say, there is joy greater than the pain you endure. Life is worth living.
When you are talking with others, if somebody asks you the, “how long will you live” question, choose not to take offense. Rather, take the opportunity to enlighten them. Tell them how short of a life children born with Sickle Cell use to have, verses how long you can live today if you take care of your body. Tell them about the women who are in their eighties. Tell them you expect to live a long full life. Your friends will share in that joy with you.
When I was born in 1973—back when I had to walk up hill both ways, in three feet of snow, barefoot, and with nothing to wear but a potato sack—children born with Sickle Cell Anemia in the United States generally lived to be seven to twelve years old. As I have grown up, I’ve watched as that young age increased to be twenty years old, then thirty years old, and up to where it is today, forty to sixty years old. What a joy it is to know, if I live responsibly and take care of my health, that I could live nearly a full life!
If you do an Internet search of, “oldest living person with Sickle Cell Disease,” you will find some inspiring information. In the United States there is a woman who is eighty-five years old; in Nigeria there are references about an eighty-seven year old woman; both are living with Sickle Cell Disease. I have to admit, the first time I read the article about a woman in her eighties who’s living with Sickle Cell, it blew my mind. Think of the hope the life of those two women bring to everyone living with our illness.
Currently I am thirty-nine years old. When I was a child, I never dreamed I‘d live to be the age I am. In this case, what a delight it has been to be wrong, and how thrilling it is to think I could live another fifty years. Living with Sickle Cell Anemia is hard, there’s no doubt about that. Admittedly, there are moments when the complications and pain of Sickle Cell cause me to want to leave this life and cross over to the next; but those are moments, and they pass. Believe me when I say, there is joy greater than the pain you endure. Life is worth living.
When you are talking with others, if somebody asks you the, “how long will you live” question, choose not to take offense. Rather, take the opportunity to enlighten them. Tell them how short of a life children born with Sickle Cell use to have, verses how long you can live today if you take care of your body. Tell them about the women who are in their eighties. Tell them you expect to live a long full life. Your friends will share in that joy with you.
Finding People to Talk to
Talking with friends and family about the things you’re going through can be of great comfort. However, despite how much a friend may care, sometimes talking with another person who lives with Sickle Cell is more beneficial. Fortunately, there are people out there who can help.
SUPPORT GROUPS
A support group is where other people who live with Sickle Cell meet together. It’s a place where you can talk with others who experience similar difficulties as you. Learning how others manage their illness, talking with people who understand the pain and share common struggles can help in the coping process. If you’re interested in finding a support group for Sickle Cell patients, ask your doctor about it the next time you see him. He, or somebody on his staff, will be able to help you locate one. You can also look online by typing in “Sickle Cell support groups” and the city or State you live in and see what you find.
SICKLE CELL ORGANIZATIONS
Sickle Cell Organizations are spread throughout the country. They may offer summer camp, provide counseling, support, or a variety of other services and activities for youth and families. If nothing else, you may be able to find a new friend who understands what it’s like to live with Sickle Cell Disease. Again, ask your doctor for information about a Sickle Cell Organization in your area or do an online search with your parents.
SOCIAL NETWORKS
If joining a support group or becoming involved in a Sickle Cell Organization doesn’t interest you, perhaps being part of an online forum might. On a forum, or other social networks, you can read what others have written who are enduring similar things you are. You can also post questions and see what kind of response you get. You may be able to help somebody in need by sharing your life experiences. Forums can be both informative and emotionally moving.
CHURCH
Faith, religion, spirituality, and the friendships you form in your church-going activities can be a powerful source of strength and comfort. As a result of the love I constantly received from friends at church, and because my family life was/is so good, I never wanted for any other kind of support group. Not everyone has that. Everybody’s life circumstance is different. Church can be a place where you can find a network of friends who can help provide the strength and fellowship you need. You may even find somebody in the congregation who also has Sickle Cell.
SUPPORT GROUPS
A support group is where other people who live with Sickle Cell meet together. It’s a place where you can talk with others who experience similar difficulties as you. Learning how others manage their illness, talking with people who understand the pain and share common struggles can help in the coping process. If you’re interested in finding a support group for Sickle Cell patients, ask your doctor about it the next time you see him. He, or somebody on his staff, will be able to help you locate one. You can also look online by typing in “Sickle Cell support groups” and the city or State you live in and see what you find.
SICKLE CELL ORGANIZATIONS
Sickle Cell Organizations are spread throughout the country. They may offer summer camp, provide counseling, support, or a variety of other services and activities for youth and families. If nothing else, you may be able to find a new friend who understands what it’s like to live with Sickle Cell Disease. Again, ask your doctor for information about a Sickle Cell Organization in your area or do an online search with your parents.
SOCIAL NETWORKS
If joining a support group or becoming involved in a Sickle Cell Organization doesn’t interest you, perhaps being part of an online forum might. On a forum, or other social networks, you can read what others have written who are enduring similar things you are. You can also post questions and see what kind of response you get. You may be able to help somebody in need by sharing your life experiences. Forums can be both informative and emotionally moving.
CHURCH
Faith, religion, spirituality, and the friendships you form in your church-going activities can be a powerful source of strength and comfort. As a result of the love I constantly received from friends at church, and because my family life was/is so good, I never wanted for any other kind of support group. Not everyone has that. Everybody’s life circumstance is different. Church can be a place where you can find a network of friends who can help provide the strength and fellowship you need. You may even find somebody in the congregation who also has Sickle Cell.
Feel Embarrassed
Learning to talk with other people about your condition is another ingredient in accepting your illness. Doing research for my book that is this blog, I read many posts on Sickle Cell forums. I was surprised to learn how many young people wonder if they should tell their friends or family they have Sickle Cell Anemia. Perhaps you are wondering the same thing. My answer to that question is yes. Absolutely, yes!
Before discussing why I believe it’s so important to be open and honest with people about your condition, I’ll quickly go over some of the reasons why some people may not want to tell others they have Sickle Cell.
FEEL EMBARRASSED
Some feel a need to hide their illness because they are embarrassed about being sick. If this is true for you, please, do your best to not let yourself feel this way. Sickle Cell Anemia is a genetic disease you were born with. Neither you nor your parents did anything wrong to “cause” you to be born with it.
Unfortunate as it is, disease is a normal part of the human experience. In fact, research shows nearly 1 in 2 Americans—that’s about 133 million people in the United States—have some kind of chronic condition. Of those 133 million people, 96% live with an “invisible illness.” An invisible illness means the individual doesn’t need to use a walker, wheelchair, or cane. From the outside they look perfectly healthy. Sickle Cell is generally an invisible illness. With so many sick people in the world, you and I have nothing to be embarrassed about. Disease is a struggle, not an embarrassment.
Before discussing why I believe it’s so important to be open and honest with people about your condition, I’ll quickly go over some of the reasons why some people may not want to tell others they have Sickle Cell.
FEEL EMBARRASSED
Some feel a need to hide their illness because they are embarrassed about being sick. If this is true for you, please, do your best to not let yourself feel this way. Sickle Cell Anemia is a genetic disease you were born with. Neither you nor your parents did anything wrong to “cause” you to be born with it.
Unfortunate as it is, disease is a normal part of the human experience. In fact, research shows nearly 1 in 2 Americans—that’s about 133 million people in the United States—have some kind of chronic condition. Of those 133 million people, 96% live with an “invisible illness.” An invisible illness means the individual doesn’t need to use a walker, wheelchair, or cane. From the outside they look perfectly healthy. Sickle Cell is generally an invisible illness. With so many sick people in the world, you and I have nothing to be embarrassed about. Disease is a struggle, not an embarrassment.
In Denial
Denial, I believe, is a big reason why many don’t tell others they’re sick. By denying they are sick to other people, it’s easier for them to lie to themselves about the truth of their illness. It’s important to understand how dangerous this kind of self-denial can be. By not admitting you‘re sick, by not acting responsibly and taking care of your body on a daily basis, you put your health in danger. Turning a blind eye to your problems won’t make them go away, as we discussed earlier, it only makes them worse. However, sharing your burdens with the ones you trust allows you to draw strength from their love and support.
Being Labeled
Many fear being labeled by family as “the sick one,” by friends as “the one who pretends to be sick just to get attention,” by teachers as “the lazy one with special needs,” or fear being stigmatized in some way.
People who label others, especially those with disabilities or other medical problems, generally do so because they are ignorant and uninformed. Talking with others about the nature of Sickle Cell Disease helps increase awareness. Improved awareness of the severity of Sickle Cell, is something our world as a whole needs more of. People are far less likely to label or prejudge when they are informed.
People who label others, especially those with disabilities or other medical problems, generally do so because they are ignorant and uninformed. Talking with others about the nature of Sickle Cell Disease helps increase awareness. Improved awareness of the severity of Sickle Cell, is something our world as a whole needs more of. People are far less likely to label or prejudge when they are informed.
Treated Differently
Some worry they will be treated differently if they tell their friends or family they have Sickle Cell. Others fear their friends will “feel sorry” for them or be afraid to be around them. Being open and honest with loved ones is the key to preventing this from happening. Communicate with people about your illness in a patient and polite manner. Help them understand how Sickle Cell impacts your life. This will resolve any concerns they may have. Take heart. Be courageous enough to be upfront with people to ensure any fears you may have don’t become reality.
I can honestly say that I’ve never had anybody treat me differently after they learned I live with Sickle Cell Disease. Typically, people want to know more about the illness and are curious how it impacts my daily life. Mostly, they are amazed at the things I endure and how well I cope with it.
I can honestly say that I’ve never had anybody treat me differently after they learned I live with Sickle Cell Disease. Typically, people want to know more about the illness and are curious how it impacts my daily life. Mostly, they are amazed at the things I endure and how well I cope with it.
Don't Want Others to Know
Perhaps you don’t like talking about your illness because you’re a private person and feel “it’s nobody’s business.” To this I say, don’t underestimate the power of love. Living with Sickle Cell Anemia is a difficult challenge. You can’t do it alone. Some days it will be the simplest act of kindness you receive from family or friends that will keep you from loosing hope. Compassion from the ones you share your life with may be the best medicine you ever receive.
Despite the fact that I’m quite open about living with Sickle Cell, I can relate to feeling a need to keep certain things about your illness private. There have been times in my life when I didn’t talk about a new complication that arose in my health even with my closest friends. In those instances I found that I had to come to terms with the latest issue in my life myself before I could talk about it with others. Ultimately, however, sharing those personal issues with the people I most trust has always proven to be a blessing. Friends and family can be a powerful source of strength.
Now that I‘ve talked about some of the reasons why you may not want to tell others you live with Sickle Cell Anemia, let’s discuss some of the reasons why I believe you should tell people.
Despite the fact that I’m quite open about living with Sickle Cell, I can relate to feeling a need to keep certain things about your illness private. There have been times in my life when I didn’t talk about a new complication that arose in my health even with my closest friends. In those instances I found that I had to come to terms with the latest issue in my life myself before I could talk about it with others. Ultimately, however, sharing those personal issues with the people I most trust has always proven to be a blessing. Friends and family can be a powerful source of strength.
Now that I‘ve talked about some of the reasons why you may not want to tell others you live with Sickle Cell Anemia, let’s discuss some of the reasons why I believe you should tell people.
Safety Net
If you have ever seen a high wire circus act, or some other similar dangerous acrobatic feat, there’s often a safety net under the performers. This is set in place to catch them so they don’t go splat on the ground should they fall. Sharing the details of your health with loved ones similarly lays out a massive safety net that helps safeguard your health and life.
If you were to spend the night at a relative’s home and had a serious medical problem occur, would somebody there know how to help you? If out with friends and you suddenly had to go to the hospital, would they know what to tell an ER doctor? If away from home, would those you’re with be able to tell the hospital what medications you’re taking?
In my life, all my friends know I have Sickle Cell. They are aware of my needs, and know that cold causes me a great amount of pain. Many times I’ve had friends turn the air conditioner down, or roll the car windows up, to help me stay warm. Many of my friends are aware of the fact that I often take pain medicine every four hours and, to keep from getting sick from that medication, I have to eat something with it. Sensitive to this, I’ve had friends take notice how much time passed since I last ate and asked if I needed to eat. This is both touching and of comfort.
Having people aware of your needs will help you live a healthier life. If your friends are informed about your medical condition, then you don’t have to worry about being pressured into doing something that may be too taxing on your body. You also don’t have to worry about being embarrassed should a certain need arise. Your true friends care about you, they want to help you stay healthy, and are willing give their assistance when you need it.
Having people mindful of your needs shouldn’t make you feel like you’re being treated differently than the rest of your friends or family. Nor should you feel embarrassed about getting additional attention. Instead, use it as a tool to deepen the love and respect which already exists in your relationships.
In my life there has only been one instance when family wasn’t nearby at a time when I needed to be taken to the hospital. I knew my best friend was reliable and I called her at work. Without hesitation, without needing an explanation, and without delay, she left work and drove me to the hospital. She remained by side for several hours in the ER until I was admitted. I pray that you also have this kind of “safety-net” which comes from the love of family and trusted friends.
If you were to spend the night at a relative’s home and had a serious medical problem occur, would somebody there know how to help you? If out with friends and you suddenly had to go to the hospital, would they know what to tell an ER doctor? If away from home, would those you’re with be able to tell the hospital what medications you’re taking?
In my life, all my friends know I have Sickle Cell. They are aware of my needs, and know that cold causes me a great amount of pain. Many times I’ve had friends turn the air conditioner down, or roll the car windows up, to help me stay warm. Many of my friends are aware of the fact that I often take pain medicine every four hours and, to keep from getting sick from that medication, I have to eat something with it. Sensitive to this, I’ve had friends take notice how much time passed since I last ate and asked if I needed to eat. This is both touching and of comfort.
Having people aware of your needs will help you live a healthier life. If your friends are informed about your medical condition, then you don’t have to worry about being pressured into doing something that may be too taxing on your body. You also don’t have to worry about being embarrassed should a certain need arise. Your true friends care about you, they want to help you stay healthy, and are willing give their assistance when you need it.
Having people mindful of your needs shouldn’t make you feel like you’re being treated differently than the rest of your friends or family. Nor should you feel embarrassed about getting additional attention. Instead, use it as a tool to deepen the love and respect which already exists in your relationships.
In my life there has only been one instance when family wasn’t nearby at a time when I needed to be taken to the hospital. I knew my best friend was reliable and I called her at work. Without hesitation, without needing an explanation, and without delay, she left work and drove me to the hospital. She remained by side for several hours in the ER until I was admitted. I pray that you also have this kind of “safety-net” which comes from the love of family and trusted friends.
Building Relationships of Trust
Sickle Cell is a disease that influences almost every aspect of your life. Though you may not be able to choose how it impacts you physically, the power is yours to decide how it affects your relationships. In part, the love you have for your family and friends is demonstrated in your honesty. Being open about the details of your health shows you respect them enough to share your entire life with them. However, if you choose to keep your health problems a secret, you are hiding away some of the biggest parts of who you are.
If you’re secretive about your illness, it’s difficult for your loved ones to fully appreciate you as a person. It makes it impossible for them to totally understand:
➢ You as a person
➢ What makes you behave in certain ways at certain times
➢ Why you’re often absent from, or don’t participate in, certain events
➢ Why you are mentally and physically functional some days and not others
➢ And a hundred other things that will help them become more sensitive to your needs.
Choosing to keep your illness hidden, you are in a sense lying to those you share your life with; and the last thing you need is for your nose to grow and your pants to catch fire. However, by sharing your trials with your loved ones, you may be surprised to see how much you inspire them to bravely face their own challenges. You may also be amazed to see how much strength you gain from the love and support others give you when they understand the circumstances of your health.
A perfect example of how relationships can be strengthened by sharing your illness with others is found in a friendship with a young woman named Elisa. Like all those close to me, Elisa knew I suffered through a great amount of back pain. She could always see when I was in more discomfort than normal and often asked if she could rub my back for me. When my back was really hurting, I would have to ask a friend if they wouldn’t mind rubbing my back. With Elisa, however, I never had to ask; she always knew when I was in pain and always asked to help relieve it through that simple act of kindness. This is my fondest memory of her, and it helped build a beautiful bond between us. She is not alone. I have other friends who also demonstrate their love and compassion for me through similar acts of kindness.
If you’re secretive about your illness, it’s difficult for your loved ones to fully appreciate you as a person. It makes it impossible for them to totally understand:
➢ You as a person
➢ What makes you behave in certain ways at certain times
➢ Why you’re often absent from, or don’t participate in, certain events
➢ Why you are mentally and physically functional some days and not others
➢ And a hundred other things that will help them become more sensitive to your needs.
Choosing to keep your illness hidden, you are in a sense lying to those you share your life with; and the last thing you need is for your nose to grow and your pants to catch fire. However, by sharing your trials with your loved ones, you may be surprised to see how much you inspire them to bravely face their own challenges. You may also be amazed to see how much strength you gain from the love and support others give you when they understand the circumstances of your health.
A perfect example of how relationships can be strengthened by sharing your illness with others is found in a friendship with a young woman named Elisa. Like all those close to me, Elisa knew I suffered through a great amount of back pain. She could always see when I was in more discomfort than normal and often asked if she could rub my back for me. When my back was really hurting, I would have to ask a friend if they wouldn’t mind rubbing my back. With Elisa, however, I never had to ask; she always knew when I was in pain and always asked to help relieve it through that simple act of kindness. This is my fondest memory of her, and it helped build a beautiful bond between us. She is not alone. I have other friends who also demonstrate their love and compassion for me through similar acts of kindness.
People Are Concerned
This is another reason why I feel it’s important to speak openly with others about your illness. Don’t fool yourself into thinking, “If I don’t tell people I’m sick, nobody is going to notice.” People are smart; well, most people are smart. If you’re repetitively absent from school, teachers and classmates are going to see it. If you frequently miss social activities, friends will notice. If not at church services, your fellow members will be concerned. The people who love you want to know you are all right. With that concern comes a desire to assist you in any way they can.
Let me play devils advocate for a moment. Suppose for a moment that you’ve missed two weeks from school due to a Sickle Cell related hospitalization. You have friends at school that you’ve intentionally never told that you have Sickle Cell Disease. After two weeks of absence, you return to school. When your friends ask where you’ve been for the past fourteen days, what do you tell them? That you were abducted by aliens? Will you invent a lie to tell them? Remember, these are your friends and they are concerned about your well-being. From my experience, lies lead to hurt feelings; hurt feelings lead to broken friendships. Besides, the truth is always easier to remember than a lie.
The people in your life who love you are concerned about you. Honor that love by being open and honest with them.
Let me play devils advocate for a moment. Suppose for a moment that you’ve missed two weeks from school due to a Sickle Cell related hospitalization. You have friends at school that you’ve intentionally never told that you have Sickle Cell Disease. After two weeks of absence, you return to school. When your friends ask where you’ve been for the past fourteen days, what do you tell them? That you were abducted by aliens? Will you invent a lie to tell them? Remember, these are your friends and they are concerned about your well-being. From my experience, lies lead to hurt feelings; hurt feelings lead to broken friendships. Besides, the truth is always easier to remember than a lie.
The people in your life who love you are concerned about you. Honor that love by being open and honest with them.
You Don't Need the Stress
Trying to keep your health condition secret is stress you absolutely do not need. Withholding this truth from teachers, friends, family, and everybody you know, will be a massive strain on your mind and body. Living with Sickle Cell is stressful enough by itself. You don’t need the added worry of people finding out your secret. After all, you aren’t a superhero who needs a secret identity to keep villains from destroying you and everybody you love. You are a real person with real needs.
Emotionally and spiritually you need the strength good friends can provide, the love family can give, and the comfort that comes from talking with others. The life preservers in the stormy seas of your life will frequently be found in your meaningful relationships.
Emotionally and spiritually you need the strength good friends can provide, the love family can give, and the comfort that comes from talking with others. The life preservers in the stormy seas of your life will frequently be found in your meaningful relationships.
Saturday, December 8, 2012
Set the Goal to Graduate
Part of planning for your future is doing your best in school. With the frequent absences that occur as a result of living with Sickle Cell Disease, keeping your grades up and gaining an education can seem like an impossible mission. It is, however, a mission that can be accomplished and accomplished well. Though I missed 50% of my class time in high school, I was able to maintain decent grades; generally a B average.
Though Sickle Cell may be a hindrance to your physical activities, it does not—unless you have lasting injury from a stroke—restrict your intelligence. You can achieve anything you put your mind to; though you may have to work harder for it than some people. When you work hard for something, it means all that much more to you when you accomplish your goals.
The first thing I have to say about going to school is set the goal, if you haven’t already, to graduate high school and do so with a good GPA. The skills you gain by earning good grades will remain with you throughout your life. It will help you develop a work ethic and give you the confidence needed to achieve the things you want in life.
I remember the day I graduated High School. I was filled with such a sense of satisfaction as I walked off that stage with diploma in hand. Missing 50% of school gave me a great amount of make-up home. Fortunately I had the time and motivation to do it.
Near the end of my senior year I had become deathly ill. This nearly prevented me from graduating. Fortunately I had teachers and counselors who were aware of my needs and willing to help me. I couldn’t have done it without them. Receiving my high school diploma represented the pay off to all that hard work outside the classroom. With focus and determination, you can experience that feeling also.
Though Sickle Cell may be a hindrance to your physical activities, it does not—unless you have lasting injury from a stroke—restrict your intelligence. You can achieve anything you put your mind to; though you may have to work harder for it than some people. When you work hard for something, it means all that much more to you when you accomplish your goals.
The first thing I have to say about going to school is set the goal, if you haven’t already, to graduate high school and do so with a good GPA. The skills you gain by earning good grades will remain with you throughout your life. It will help you develop a work ethic and give you the confidence needed to achieve the things you want in life.
I remember the day I graduated High School. I was filled with such a sense of satisfaction as I walked off that stage with diploma in hand. Missing 50% of school gave me a great amount of make-up home. Fortunately I had the time and motivation to do it.
Near the end of my senior year I had become deathly ill. This nearly prevented me from graduating. Fortunately I had teachers and counselors who were aware of my needs and willing to help me. I couldn’t have done it without them. Receiving my high school diploma represented the pay off to all that hard work outside the classroom. With focus and determination, you can experience that feeling also.
Parent Involvement
Without my parent’s interest in my schooling, I would not have been able to excel in grade school the way I did. I cannot express enough the importance in having your parents or guardians actively involved in your education. A parent can go to your school and pick up make-up homework for you if you’re in the hospital or sick at home. Parents can conference with teachers and counselors to educate them about your needs inside and outside the classroom. They can talk to your principal about any problems teachers may be giving you. Parents can get things done that a student can’t.
My parents played a huge role in my academic success. They picked up make-up home work for me and counseled with teachers. I recall one year I has having problems with my P.E. teacher. This teacher was placing unrealistic demands on me, and not being at all sympathetic to my situation. My father finally had to talk with the school administrators, and they helped resolve the situation. Like I said, parents and guardians can accomplish things that students can’t.
My parents played a huge role in my academic success. They picked up make-up home work for me and counseled with teachers. I recall one year I has having problems with my P.E. teacher. This teacher was placing unrealistic demands on me, and not being at all sympathetic to my situation. My father finally had to talk with the school administrators, and they helped resolve the situation. Like I said, parents and guardians can accomplish things that students can’t.
Keep Teachers Informed
Just as parents who are actively involved in your education can make a difference, teachers who are aware of your needs can also play a big role in how well you succeed in school. When teachers are informed of your needs, they can:
➢ Make sure the classroom temperature doesn’t get too cold
➢ Help you stay hydrated by allowing you to bring a water bottle in the classroom
➢ Permit you to have more frequent restroom breaks
(Drinking nearly a gallon of water daily may, for some reason, cause you to need more restroom breaks than others.)
➢ Allow you to eat in the class
➢ Have make-up home work ready for a relative or friend to pick up
➢ Give you a spare set of textbooks to use at home for make-up work (This allows you to always have the necessary materials to do your make-up homework.)
➢ Be more understanding as to why your classroom performance may be better some days than others.
How you physically feel will often influence how well you mentally function. As a result, there will be times when your clarity and/or productivity aren’t at their peak. On such days you may not test as well as you typically do or the quality of your work may be less than ideal. Without a knowledge of why this is so, teachers may form false ideas about the cause. In consequence, you could be given a label you don’t deserve. However, when teachers are informed about the challenges you face, when they understand the reason behind your fluctuating performance, they will be more willing to help you excel.
When I was in a school, the teachers who were informed about my needs had a very different attitude toward my absences than the teachers who lacked that information. Teachers who understood my circumstance were almost always happy to help me, and went out of their way to do so. I remember one day a teacher told me that she could always tell how I was feeling when taking tests based on my scores. When I felt good, I tested well; when I was feeling poorly, I tested . . . well, poorly. I hope that means she graded me on a curve.
➢ Make sure the classroom temperature doesn’t get too cold
➢ Help you stay hydrated by allowing you to bring a water bottle in the classroom
➢ Permit you to have more frequent restroom breaks
(Drinking nearly a gallon of water daily may, for some reason, cause you to need more restroom breaks than others.)
➢ Allow you to eat in the class
➢ Have make-up home work ready for a relative or friend to pick up
➢ Give you a spare set of textbooks to use at home for make-up work (This allows you to always have the necessary materials to do your make-up homework.)
➢ Be more understanding as to why your classroom performance may be better some days than others.
How you physically feel will often influence how well you mentally function. As a result, there will be times when your clarity and/or productivity aren’t at their peak. On such days you may not test as well as you typically do or the quality of your work may be less than ideal. Without a knowledge of why this is so, teachers may form false ideas about the cause. In consequence, you could be given a label you don’t deserve. However, when teachers are informed about the challenges you face, when they understand the reason behind your fluctuating performance, they will be more willing to help you excel.
When I was in a school, the teachers who were informed about my needs had a very different attitude toward my absences than the teachers who lacked that information. Teachers who understood my circumstance were almost always happy to help me, and went out of their way to do so. I remember one day a teacher told me that she could always tell how I was feeling when taking tests based on my scores. When I felt good, I tested well; when I was feeling poorly, I tested . . . well, poorly. I hope that means she graded me on a curve.
Special Attention
Perhaps you’re thinking, “All the things listed in the above section is exactly the kind of attention I don’t want to bring to myself.” Maybe you don’t want to be treated any differently than anybody else. Perhaps you don’t want other kids thinking you have special privileges and tease you about it. I can tell you I understand if you feel this way. I can also tell you what I experienced.
By being open and honest with people, by educating others about why I have these needs, I don’t get teased; I haven’t had to worry about sticky unpleasant labels being attached to me; and I can’t ever recall being ridiculed. Not as a child in elementary school. Not in middle school. Not in high school, and not as an adult. Instead, people respect and admire me for the way I cope with such a difficult illness.
Though you may not like the attention Sickle Cell sometimes draws to you, to some extent it is a reality you have to accept. When it comes to certain things, in order to stay alive, you may have to be treated somewhat differently at times. You’ve got to do what you’ve got to do in order to stay healthy. Look at it this way: a blind person has certain needs; a diabetic has specific needs; and an individual confined to a wheelchair has special needs. There is no shame in requiring the things you do.
When I think of “being treated differently,” I think of people looking on me in a pitiful way wondering how they can help the poor fragile creature known as Jon Monk. Drawing from my personal experiences, I can’t think of a time when I have felt others were “treating me differently” in this way.
Instead, I’ve felt people’s compassion and their willingness to help. The “different treatment,” in this sense, is simply awareness on the part of my friends. They are aware of the room temperature and how it affects me; they are sensitive to the fact that I need to eat frequently. This kind of treatment is a reflection of their concern for my well-being. Their desire to help comes, not because they view me as weak, but because they see my strength.
Be open and honest about your illness with your teachers and others in your life. Allow them to see your strength. In doing so you will also experience the kindness of others in positive ways.
By being open and honest with people, by educating others about why I have these needs, I don’t get teased; I haven’t had to worry about sticky unpleasant labels being attached to me; and I can’t ever recall being ridiculed. Not as a child in elementary school. Not in middle school. Not in high school, and not as an adult. Instead, people respect and admire me for the way I cope with such a difficult illness.
Though you may not like the attention Sickle Cell sometimes draws to you, to some extent it is a reality you have to accept. When it comes to certain things, in order to stay alive, you may have to be treated somewhat differently at times. You’ve got to do what you’ve got to do in order to stay healthy. Look at it this way: a blind person has certain needs; a diabetic has specific needs; and an individual confined to a wheelchair has special needs. There is no shame in requiring the things you do.
When I think of “being treated differently,” I think of people looking on me in a pitiful way wondering how they can help the poor fragile creature known as Jon Monk. Drawing from my personal experiences, I can’t think of a time when I have felt others were “treating me differently” in this way.
Instead, I’ve felt people’s compassion and their willingness to help. The “different treatment,” in this sense, is simply awareness on the part of my friends. They are aware of the room temperature and how it affects me; they are sensitive to the fact that I need to eat frequently. This kind of treatment is a reflection of their concern for my well-being. Their desire to help comes, not because they view me as weak, but because they see my strength.
Be open and honest about your illness with your teachers and others in your life. Allow them to see your strength. In doing so you will also experience the kindness of others in positive ways.
Use Available Resources
How your illness impacts your life will naturally influence the number of absences you have in school. Like I said before, I was absent 50% of the time. That’s a bunch of class time I missed out on. It could have been very easy for me to have used that as an excuse to get bad grades and perform poorly. Fortunately I had resources available to help me stay caught up and maintain a decent grade point average. This comes back to not being secretive about your illness and why you should be open with your teachers and school administrators.
When I was in school, my parents held a meeting each year with my school counselors and teachers. At that time my parents would educate them about Sickle Cell, the amount of time I generally missed during the year, and how the school could help me succeed. Together, they formed a plan that allowed me do well despite my challenges.
If you recall, I said, “If you find you aren’t being treated fairly or respectfully, don’t hesitate to tell your parents or guardians.” This goes for school as well as the hospital. I recall one year in high school some teachers were fighting me about allowing me to bring water to class and going to the restroom when needed. This was a concern because I was having kidney problems at the time. When I told my parents about this, they knew they had to use the resources available to them to correct the problem because the school wasn’t being very cooperative.
My parents spoke with Dr. Bedros about the matter. He referred us to a woman from the Sickle Cell Organization. With her assistance, we were able to get the school administrators to require all my teachers to be present at a meeting where they were thoroughly educated about Sickle Cell and the complications it brings. It was amazing to see how willing the school was to work with my parents when they used all their resources. (It also helped that the Sickle Cell Organization representative who attended the meeting threatened to involve the NAACP if the school didn’t cooperate.) Bad publicity can be a powerful motivator.
When you’re young it can be an unfortunate situation when the people you most need to hear you, don’t listen. I’m sure, however, you’re loved ones will. If you are having problems with a teacher, speak with your parents. You can also ask your doctor who you can talk to at your local Sickle Cell Organization. Don’t be afraid to seek out the people and the available resources that can help you can succeed.
When I was in school, my parents held a meeting each year with my school counselors and teachers. At that time my parents would educate them about Sickle Cell, the amount of time I generally missed during the year, and how the school could help me succeed. Together, they formed a plan that allowed me do well despite my challenges.
If you recall, I said, “If you find you aren’t being treated fairly or respectfully, don’t hesitate to tell your parents or guardians.” This goes for school as well as the hospital. I recall one year in high school some teachers were fighting me about allowing me to bring water to class and going to the restroom when needed. This was a concern because I was having kidney problems at the time. When I told my parents about this, they knew they had to use the resources available to them to correct the problem because the school wasn’t being very cooperative.
My parents spoke with Dr. Bedros about the matter. He referred us to a woman from the Sickle Cell Organization. With her assistance, we were able to get the school administrators to require all my teachers to be present at a meeting where they were thoroughly educated about Sickle Cell and the complications it brings. It was amazing to see how willing the school was to work with my parents when they used all their resources. (It also helped that the Sickle Cell Organization representative who attended the meeting threatened to involve the NAACP if the school didn’t cooperate.) Bad publicity can be a powerful motivator.
When you’re young it can be an unfortunate situation when the people you most need to hear you, don’t listen. I’m sure, however, you’re loved ones will. If you are having problems with a teacher, speak with your parents. You can also ask your doctor who you can talk to at your local Sickle Cell Organization. Don’t be afraid to seek out the people and the available resources that can help you can succeed.
Class Schedule
When I was in school, I couldn’t have my P.E. class too early in the morning because when winter came it meant I was outside in the cold for an hour each day. On the other hand, I couldn’t schedule that class too late in the day because in the warmer months the heat would likewise be too much. My parents, school counselors and I had to carefully consider the time of day to take such classes.
When planning your schedule, make sure you factor in the weather and the seasons. This also applies to when you pursue your higher education. I learned my first semester of college that I performed poorly in early morning and late evening classes. It’s helpful to know the hours when you function best and plan accordingly.
When planning your schedule, make sure you factor in the weather and the seasons. This also applies to when you pursue your higher education. I learned my first semester of college that I performed poorly in early morning and late evening classes. It’s helpful to know the hours when you function best and plan accordingly.
Friday, December 7, 2012
Intro
Those who are uninformed about the nature of Sickle Cell Disease may underestimate or down play the pain you suffer. It’s important for family members to understand how severe Sickle Cell pain can be. Doctors, school nurses, teachers, friends, and employers need to know your pain can be more severe than what one experiences after surgery and can be “as intense as cancer pain.”
In a study done by Virginia Commonwealth University Researchers, more than a quarter of the Sickle Cell patients in their study reported being “in pain 95 out of every 100 days. Yet most toughed out even severe, crisis-like pain at home, reserving doctor and hospital visits for just the most intense episodes.” So, if you come across a person who’s accusing you of exaggerating your pain, you can share those facts with them. Or you could drop a bowling ball on their foot and when they start crying tell them, “Come now, don’t exaggerate your pain.” When I read the above study I thought to myself, “it would be nice to be in pain 95 out of 100 days. That way I would have five days out of a hundred that were pain free.” Generally, to some degree, I’m in pain 100 out of 100 days.
From the time I was eighteen, Avascular Necrosis has affected my back severely enough to cause chronic pain. Though I may experience long periods of time in between pain crises, my back pain is a constant in my life. If I allow my back pain to rise above a certain level, that discomfort will trigger a pain crisis. So there’s a balance that I must keep between enduring my back pain and taking painkillers to both manage my back pain and prevent it from causing Sickle Cell pain.
Since every Sickle Cell patient’s experience is different, the frequency in which one has a pain crisis, or other chronic pain, will likewise vary from person to person. Some patients only have a few pain crises a year while others, like myself, have them with great frequency. Due to the high amount of discomfort Sickle Cell patients often endure, pain management is a big concern in our healthcare. Finding relief can keep a bad crisis from becoming worse. For this reason, learning to manage your pain is of great value.
In a study done by Virginia Commonwealth University Researchers, more than a quarter of the Sickle Cell patients in their study reported being “in pain 95 out of every 100 days. Yet most toughed out even severe, crisis-like pain at home, reserving doctor and hospital visits for just the most intense episodes.” So, if you come across a person who’s accusing you of exaggerating your pain, you can share those facts with them. Or you could drop a bowling ball on their foot and when they start crying tell them, “Come now, don’t exaggerate your pain.” When I read the above study I thought to myself, “it would be nice to be in pain 95 out of 100 days. That way I would have five days out of a hundred that were pain free.” Generally, to some degree, I’m in pain 100 out of 100 days.
From the time I was eighteen, Avascular Necrosis has affected my back severely enough to cause chronic pain. Though I may experience long periods of time in between pain crises, my back pain is a constant in my life. If I allow my back pain to rise above a certain level, that discomfort will trigger a pain crisis. So there’s a balance that I must keep between enduring my back pain and taking painkillers to both manage my back pain and prevent it from causing Sickle Cell pain.
Since every Sickle Cell patient’s experience is different, the frequency in which one has a pain crisis, or other chronic pain, will likewise vary from person to person. Some patients only have a few pain crises a year while others, like myself, have them with great frequency. Due to the high amount of discomfort Sickle Cell patients often endure, pain management is a big concern in our healthcare. Finding relief can keep a bad crisis from becoming worse. For this reason, learning to manage your pain is of great value.
Pain Medication
Obviously, how Sickle Cell uniquely affects you will determine how much pain medicine you need and when. Your primary doctor might prescribe pain medication or, if need requires it, he/she may refer you to a pain clinic. It’s the specialty of doctors in pain clinics to know what pain relievers can work together to safely provide the most relief.
Pain medication is of course a useful tool. Many times a crisis can be light enough to tough out until it passes. Sometimes the pain can be managed with over the counter medicine like Tylenol. Other times, more powerful, doctor prescribed medications are needed. Then there are those times when home medications provide little relief and a visit to the hospital is required where they can administer stronger drugs. Often home prescriptions work just fine, but the true challenge comes in having to wait for them to take affect, or having to wait an hour or two before you can take the next dose.
Have you ever been out with friends and suddenly had a pain crisis descend upon you like a strike of lightning from the sky? What do you do to control your pain during the forty to sixty minutes it takes for the medicine to kick in? Don’t knock yourself out with a board just yet because I have a few suggestions to share with you.
Pain medication is of course a useful tool. Many times a crisis can be light enough to tough out until it passes. Sometimes the pain can be managed with over the counter medicine like Tylenol. Other times, more powerful, doctor prescribed medications are needed. Then there are those times when home medications provide little relief and a visit to the hospital is required where they can administer stronger drugs. Often home prescriptions work just fine, but the true challenge comes in having to wait for them to take affect, or having to wait an hour or two before you can take the next dose.
Have you ever been out with friends and suddenly had a pain crisis descend upon you like a strike of lightning from the sky? What do you do to control your pain during the forty to sixty minutes it takes for the medicine to kick in? Don’t knock yourself out with a board just yet because I have a few suggestions to share with you.
Mental Discipline
Whether it’s through mental discipline, meditation, self-hypnosis or prayer, and regardless if your discomfort is one or ten on the pain scale, often you can find relief with the power of your own mind. Growing up under my father’s instruction, I learned the value and effectiveness of controlling my pain through mental discipline. As a result of his coaching, I practiced and later modified, several methods that help bring relief during a crisis and from my daily pains.
I’ll describe some of the methods I use. I hope these techniques can also help you in times of pain. Before I share them with you, I want you to remember these four things:
1) Success or failure in using these techniques will often depend on whether or not you believe they will work. If you’re open-minded to the possibility of success, you may be surprised by how much you succeed.
2) These techniques by no means are intended to replace proper medical attention and responsible use of pain medication. Rather, they are tools to help you better manage your pain.
3) Don’t feel like you are doing something wrong if all of your pain isn’t fully removed when you use these techniques. Often these methods will simply help you survive those slow passing minutes by simply lessening your pain and making it more tolerable.
4) Practice makes perfect. The more time you spend training yourself to use these tools, the more skilled you’ll become.
I’ll describe some of the methods I use. I hope these techniques can also help you in times of pain. Before I share them with you, I want you to remember these four things:
1) Success or failure in using these techniques will often depend on whether or not you believe they will work. If you’re open-minded to the possibility of success, you may be surprised by how much you succeed.
2) These techniques by no means are intended to replace proper medical attention and responsible use of pain medication. Rather, they are tools to help you better manage your pain.
3) Don’t feel like you are doing something wrong if all of your pain isn’t fully removed when you use these techniques. Often these methods will simply help you survive those slow passing minutes by simply lessening your pain and making it more tolerable.
4) Practice makes perfect. The more time you spend training yourself to use these tools, the more skilled you’ll become.
Preparation - Be Calm and Breathe Normally
When I was young, before I learned the techniques I’m about to share, I remember how easy it was to allow myself to become almost panicky during a really bad pain crisis. I would tense my body and either breathe too fast or not enough. This would cause my heart to beat faster, deprive me of oxygen, and lead to more discomfort. With my father’s help, I learned to control my anxiety and pain much better.
The first steps to using any kind of mental discipline for pain management begins with training yourself to stay emotionally calm when hurting. If you allow yourself to become fearful or anxious during a crisis, the result will be more pain. Learning to keep yourself physically relaxed is closely connected with staying mentally calm. Out of control emotions and tense muscles are going to add stress to your already distressed body. So, despite how severe your discomfort might be, remain as calm and relaxed as you possibly can.
When a really bad crisis strikes, and it feels like a million needles are trying to push their way out of your body with every heartbeat and every breath, it can be a challenge to control your breathing and heart rate. However, learning to do this while in discomfort is another part of learning to control your pain. A crisis occurs when sickle cells prevent normal oxygen and blood flow. This makes breathing naturally especially important so your cells can deliver the much needed oxygen.
The first steps to using any kind of mental discipline for pain management begins with training yourself to stay emotionally calm when hurting. If you allow yourself to become fearful or anxious during a crisis, the result will be more pain. Learning to keep yourself physically relaxed is closely connected with staying mentally calm. Out of control emotions and tense muscles are going to add stress to your already distressed body. So, despite how severe your discomfort might be, remain as calm and relaxed as you possibly can.
When a really bad crisis strikes, and it feels like a million needles are trying to push their way out of your body with every heartbeat and every breath, it can be a challenge to control your breathing and heart rate. However, learning to do this while in discomfort is another part of learning to control your pain. A crisis occurs when sickle cells prevent normal oxygen and blood flow. This makes breathing naturally especially important so your cells can deliver the much needed oxygen.
Pain Relief Method #1 – In with the Good, Out with the Bad
Now that you know what the basic tools are for controlling your pain, here are some ways you can put that knowledge to use. For me, imagination and visualization are key to my mental techniques of pain control. “In with the Good, Out with the Bad,” is simply a breathing technique. When you exhale, do so through your mouth. Imagine you are expelling the pain from your body. It may help to imagine a black smoke coming out of your mouth each time you exhale. The black smoke represents the pain leaving your body one breath at a time. Then, when you inhale, imagine you are breathing in strength, energy, health, and comfort that fills your body and replaces your pain.
So, when you exhale, breathe out the pain. When you inhale, breathe in relief. Continue to do this over and over again as long as it takes. As you do so, your pain will become less and less intense with every breath. The more you practice, the more your mind will associate those thoughts and images with pain relief, and the more effective the technique will become for you.
So, when you exhale, breathe out the pain. When you inhale, breathe in relief. Continue to do this over and over again as long as it takes. As you do so, your pain will become less and less intense with every breath. The more you practice, the more your mind will associate those thoughts and images with pain relief, and the more effective the technique will become for you.
Pain Relief Method #2 – The White Ball
This method takes a bit more imagination. Start by relaxing your mind and body as discussed above. Then close your eyes and imagine yourself lying in bed, on the floor, or some place pleasant. Next, imagine a bright glowing white ball about the size of a golf ball, hovering in the air right above you. Imagine the ball drawing the pain out of your body like a powerful vacuum. Since pain really sucks anyway, this shouldn’t be too difficult.
See your pain as if it were a ribbon of white light being pulled out of your body and drawn into this ball of light. As the white ball removes more and more of your pain, the bigger it grows. In your mind, you may imagine the ball growing to the size of a beach ball, the moon, the sun, or bigger, depending on how bad your pain is. Once you’ve imagined all your discomfort has gone into this ball, which now represents your pain, imagine it slowly drifting away from you. Tell yourself, “The more distant the ball gets, the more comfortable I feel.” Repeat this to yourself. As the ball drifts further away, the smaller it will appear and the less pain you’ll have. Eventually, the ball of light will appear to be a small dot in the distance and fade into nothing.
This technique may be a longer process of mentally dealing with pain than the first. However, using your imagination to distract yourself from your discomfort is an effective way managing it.
See your pain as if it were a ribbon of white light being pulled out of your body and drawn into this ball of light. As the white ball removes more and more of your pain, the bigger it grows. In your mind, you may imagine the ball growing to the size of a beach ball, the moon, the sun, or bigger, depending on how bad your pain is. Once you’ve imagined all your discomfort has gone into this ball, which now represents your pain, imagine it slowly drifting away from you. Tell yourself, “The more distant the ball gets, the more comfortable I feel.” Repeat this to yourself. As the ball drifts further away, the smaller it will appear and the less pain you’ll have. Eventually, the ball of light will appear to be a small dot in the distance and fade into nothing.
This technique may be a longer process of mentally dealing with pain than the first. However, using your imagination to distract yourself from your discomfort is an effective way managing it.
Pain Relief Method #3 – Distracting Yourself
Sometimes the best thing you can do when waiting for your medicine to kick in is to try to distract yourself from feeling the pain. If you allow yourself to focus entirely on your discomfort, you will only succeed in making it grow more intense. Learn to focus your attention on something else.
I personally am able to use art and writing as distractions. As a result, I have a number of poems and pieces of art that reflect the pain I was in at the time of their creation. Sometimes the discomfort is too great to do either of those things. In this case, I may watch television, listen to music or inspirational talks, or play a game. I really like listening to old time radio shows like, “The Shadow,” or “The Lone Ranger.” These are the things your grandparents listened to before TV was invented, back in the Dark Ages. Books on tape can also be good distractions.
I personally am able to use art and writing as distractions. As a result, I have a number of poems and pieces of art that reflect the pain I was in at the time of their creation. Sometimes the discomfort is too great to do either of those things. In this case, I may watch television, listen to music or inspirational talks, or play a game. I really like listening to old time radio shows like, “The Shadow,” or “The Lone Ranger.” These are the things your grandparents listened to before TV was invented, back in the Dark Ages. Books on tape can also be good distractions.
Pain Relief Method #4 – Imagination
To repeat myself, imagination is a useful tool in pain control. If you’re in a great amount of discomfort, envision being some place far away from your pain. For example--while breathing in a slow and controlled manner--you may imagine yourself lying on a beach. Absorb the warmth of the sun on your skin allowing its rays to energize and relax you. Hear the sound of the waves crashing on the shore. Feel a gentle breeze move over your body. Smell the ocean. Taste the sea salt in the air. Imagine dolphins jumping in and out of the water. Picture seagulls flying in the air. Visualize as many details as possible. As you distract yourself from your pain by using your imagination, relief will come, even if it’s just a little.
Pain Relief Method #5 – Marble Technique A
These techniques are a way of distracting yourself from the pain. I use glass marbles about one inch in diameter. This is the average size of a “shooter” marble; it’s the largest marble in a set. Though you can practice this method without an actual marble, I have found that it helps to have a physical object in hand. For me, this works best while lying down, though it can be done in any circumstance. With this technique, you hold a marble in your hand. Use your breathing and relaxation exercises. Think of this marble as a source of warm healing energy that spreads throughout your entire body.
First, feel the hand that’s holding the marble become warm, relaxed, and free of pain as the healing energy radiates out of it. As your hand warms, allow the energy to slowly move up your forearm, into your upper arm, across your shoulders, up your neck and over your head. Feel it gradually move across your shoulders, down your back, chest, stomach, into your other arm and hand. Feel it flow down your legs, finally reaching your feet and toes. As the healing energy inches over each part of your body, it replaces your pain with comfort, warmth, and relaxation.
This has always been a very beneficial method for me. Depending on the type of pain I’m having, I may do the same process in reverse. Rather than having the energy from the marble move across my body, I may imagine the marble is drawing the pain out of my body. Beginning from my toes and moving upward, I will imagine the marble absorbing all my pain, similar to “The White Ball” technique. I actually have a polished blood red quarts crystal sphere about two inches in diameter that I use specifically for this technique, a picture is below. It has black mineral deposits on the surface in the shape of sickle cells. It’s pretty cool. I bought it on eBay. I’m somewhat of an eBay addict. When in crisis, I use this sphere and imagine it’s absorbing all my sickle cells. Actually seeing sickle cell-like deposits on the sphere helps the visualization process.
First, feel the hand that’s holding the marble become warm, relaxed, and free of pain as the healing energy radiates out of it. As your hand warms, allow the energy to slowly move up your forearm, into your upper arm, across your shoulders, up your neck and over your head. Feel it gradually move across your shoulders, down your back, chest, stomach, into your other arm and hand. Feel it flow down your legs, finally reaching your feet and toes. As the healing energy inches over each part of your body, it replaces your pain with comfort, warmth, and relaxation.
This has always been a very beneficial method for me. Depending on the type of pain I’m having, I may do the same process in reverse. Rather than having the energy from the marble move across my body, I may imagine the marble is drawing the pain out of my body. Beginning from my toes and moving upward, I will imagine the marble absorbing all my pain, similar to “The White Ball” technique. I actually have a polished blood red quarts crystal sphere about two inches in diameter that I use specifically for this technique, a picture is below. It has black mineral deposits on the surface in the shape of sickle cells. It’s pretty cool. I bought it on eBay. I’m somewhat of an eBay addict. When in crisis, I use this sphere and imagine it’s absorbing all my sickle cells. Actually seeing sickle cell-like deposits on the sphere helps the visualization process.
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| The ball on the left is nearly transparent. The one on the right has the sickle cell-like shapes on it, though you can't see them very clearly in the photo. |
Pain Relief Method #6 – Marble Technique B
What’s nice about these various marble techniques is they can be used anywhere at any time. I frequently use these methods when in church or a classroom setting. I keep marbles in my day bag, car, by my bed and other locations. That way, no matter where I am when pain strikes, I have one at the ready.
Another way of using a marble is simply by rolling it in your hand. Close your eyes while holding the marble in your hand. Manipulate its motion with your thumb and fingers. Move it over and under your thumb. Roll it under and over your fingers. Rotate the marble around with your fingers. Center your attention on how the marble feels against your skin. Are there any imperfections on its surface? Pay attention to how your skin glides over the glass. Focus on how the marble falls into the grooves and ridges in your hand. Sense the smallest detail about what the marble is doing and how it feels in your hand.
Another way of using a marble is simply by rolling it in your hand. Close your eyes while holding the marble in your hand. Manipulate its motion with your thumb and fingers. Move it over and under your thumb. Roll it under and over your fingers. Rotate the marble around with your fingers. Center your attention on how the marble feels against your skin. Are there any imperfections on its surface? Pay attention to how your skin glides over the glass. Focus on how the marble falls into the grooves and ridges in your hand. Sense the smallest detail about what the marble is doing and how it feels in your hand.
Pain Relief Method #7 – Marble Technique C
The marble I use for this technique is a quartz crystal marble. It’s partly transparent and partly clouded. Some marbles are entirely transparent with air bubbles trapped inside. Others have “cat’s eye” like designs in the center. As long as it’s not a single sold color, any kind of marble will do. This technique focuses more on your sense of sight and imagination.
This time, hold the marble in your hand and look at it. Focus on the objects trapped inside the glass. If the marble is cloudy, how do those clouds shape and appearance change as you slowly rotate it in different directions? Do you imagine them to be rain clouds or snow clouds? Can you see shapes or patterns in the clouds? If there are air bubbles trapped inside, what do they look like as you bring the marble closer to your eyes? What do they look like as you move it further from your eyes? Perhaps the bubbles aren’t bubbles at all, but stars in a galaxy or planets in a system—speaking imaginatively of course.
If the marble is transparent, what objects can you see through the glass? How does the shape of those objects change and bend as you rotate the marble? How does the light pass around and through the marble? Can you see lights, colors, and objects bending around the marble’s surface or though it’s center? Loose yourself in every visual detail.
This time, hold the marble in your hand and look at it. Focus on the objects trapped inside the glass. If the marble is cloudy, how do those clouds shape and appearance change as you slowly rotate it in different directions? Do you imagine them to be rain clouds or snow clouds? Can you see shapes or patterns in the clouds? If there are air bubbles trapped inside, what do they look like as you bring the marble closer to your eyes? What do they look like as you move it further from your eyes? Perhaps the bubbles aren’t bubbles at all, but stars in a galaxy or planets in a system—speaking imaginatively of course.
If the marble is transparent, what objects can you see through the glass? How does the shape of those objects change and bend as you rotate the marble? How does the light pass around and through the marble? Can you see lights, colors, and objects bending around the marble’s surface or though it’s center? Loose yourself in every visual detail.
Pain Relief Method #8 – Finger Exercises
If you don’t have a marble rolling around nearby, I'm willing to bet you have ten fingers pretty close at hand at all times. Another way of distracting yourself from your pain is by using your fingers. There are a variety of finger exercises. One goes like this.
Place both palms flat against one another with your fingers extended and spread apart from one another. Beginning with your thumbs, bring both thumbs down, dropping one behind the other. Now switch it. If your right thumb was in front of your left, bring your left thumb in front of the right. Do that as fast as you can then repeat the process with your index fingers. Bring both index fingers down, switch their places, and raise them back in place. Repeat the process as fast as you can with each set of fingers. Change the order in which you twitch your fingers. You can go from thumbs to pinkies, pinkies to thumb, or any finger combination you like.
Tapping the tips of my fingers with my thumbs is another exercise I use. This can be done with one or two hands. I typically use two hands because it requires more mental concentration and thereby distracts me more from my pain. With this technique, tap the tip of your thumb to your index finger, then middle finger, ring finger and pinky as fast as you can. Then do it in reverse. Then in any arrangement you choose.
When using two hands, you can do the finger tapping in the same direction, or you can go one direction with your left hand and the opposite direction with the other. For instance, with your left hand, tap from pinky to thumb while going thumb to pinky with your right. Then change it up. Use different finger combinations with each hand at the same time. It sounds easy, but it takes a bit of focus, which is of course the point.
Place both palms flat against one another with your fingers extended and spread apart from one another. Beginning with your thumbs, bring both thumbs down, dropping one behind the other. Now switch it. If your right thumb was in front of your left, bring your left thumb in front of the right. Do that as fast as you can then repeat the process with your index fingers. Bring both index fingers down, switch their places, and raise them back in place. Repeat the process as fast as you can with each set of fingers. Change the order in which you twitch your fingers. You can go from thumbs to pinkies, pinkies to thumb, or any finger combination you like.
Tapping the tips of my fingers with my thumbs is another exercise I use. This can be done with one or two hands. I typically use two hands because it requires more mental concentration and thereby distracts me more from my pain. With this technique, tap the tip of your thumb to your index finger, then middle finger, ring finger and pinky as fast as you can. Then do it in reverse. Then in any arrangement you choose.
When using two hands, you can do the finger tapping in the same direction, or you can go one direction with your left hand and the opposite direction with the other. For instance, with your left hand, tap from pinky to thumb while going thumb to pinky with your right. Then change it up. Use different finger combinations with each hand at the same time. It sounds easy, but it takes a bit of focus, which is of course the point.
Pain Relief Method #9 – Prayer
The last two methods I’m going to discuss are prayer and meditation. What’s the difference between the two? I would define meditation as using the power of your mind to find relief from pain and stress. Prayer I would define as calling upon a higher power, like God, to help deliver you from pain and stress. One you summon within yourself, the other is an external power you call upon, like the Force. The Light Side of the Force, of course.
I am very religious and prayer has always been of great benefit to me. Prayer can be a powerful tool in coping with pain. Though prayers may not always remove all my discomfort, it does help me better manage my pain, as well as other stressors in life. This is true for many people. According to a 2004 Government survey, 62% of adults in the U.S. use prayer for health reasons. (In case you were wondering, no, I do not pray to Yoda.)
Prayer is a deeply personal aspect of one’s beliefs. The experiences I have in making prayer a part of my daily life may be very different from yours. If prayer, religion, or faith in God, aren’t a part of your life, I would encourage you to seek these things out. See if there is room in your life for them. You may discover some new tools that will not only help you manage your pain, but help you find peace as well.
I am very religious and prayer has always been of great benefit to me. Prayer can be a powerful tool in coping with pain. Though prayers may not always remove all my discomfort, it does help me better manage my pain, as well as other stressors in life. This is true for many people. According to a 2004 Government survey, 62% of adults in the U.S. use prayer for health reasons. (In case you were wondering, no, I do not pray to Yoda.)
Prayer is a deeply personal aspect of one’s beliefs. The experiences I have in making prayer a part of my daily life may be very different from yours. If prayer, religion, or faith in God, aren’t a part of your life, I would encourage you to seek these things out. See if there is room in your life for them. You may discover some new tools that will not only help you manage your pain, but help you find peace as well.
Pain Relief Method #10 – Meditation
In the early months of 2009, I started practicing daily meditation. The results have been both surprising and rewarding. Typically when I awake in the morning, I’m in a great amount of discomfort and taking my pain medications is the first . . . well, second thing I do. However, by meditating before taking my painkillers—whether it’s in the morning or throughout my day—I have found I’m often able to go anywhere between five and eighteen hours in between doses as opposed to every four hours. There are, of course, days when meditation isn’t as affective and I still need to take my medications every four hours. However, regardless of how severe my discomfort may be any given day, daily meditation has significantly increased my ability to manage my pain and decreased the number of painkillers I take in a month.
I typically meditate three times a day and always do so before I take pain medication. I begin my fifteen to twenty-minute meditation sessions by sitting in a comfortable chair. I put a pillow behind my head so I am able to completely relaxed. I start by taking several deep breaths in and out. While concentrating on breathing at a slow even rate, I relax all the muscles in my body; this includes releasing the tension in my eyebrows, jaw, facial muscles and shoulders. I try to completely empty my mind of thoughts by focusing entirely on my breathing. Other times I may focus on the rhythm of my heart. I quiet myself to the point of being able to feel my heartbeat in my chest, arms, legs, hands, feet, fingers and toes.
Sometimes I use various visualization exercises similar to what I described in the techniques above. Often I repeat the following phrase in my head, “My mind is calm. My body is relaxed. I am completely relaxed.” I stay in that meditative state until I am thoroughly relaxed and all the pain I felt when I first began my session is either completely removed or significantly reduced. This usually takes ten to twenty minutes to accomplish. I end the session by counting to three and think to myself, “You are wide awake, fully alert and free of discomfort.” I come out of the session feeling refreshed and I’m usually pain free—sometimes for only a few minutes, other times it lasts hours.
To show how effective meditation can be, I’ll share an experience I recently had. One morning I awoke with a terrible knot in the kidney area of my lower back. The muscles were so tense it was like having a tennis ball stuck in my back. It was very uncomfortable and lasted for a day. The next morning the knot was still there. So I decided to try something in my morning meditation session.
I sat in my chair and went through all the relaxation excises I’ve described. With my eyes closed, I envisioned my back in as much as detail as possible. Then, like a computer-generated image, I removed the skin from my back one layer at a time until I could see all the muscles—sounds gross, I know. I then focused on that spot in my back and pictured a tense knotted muscle mass.
Next I visualized a warm clothing iron being pressed down on that area of my back. In my mind I ironed over the knot again and again. Each time I went over the knot, I saw the muscles relax and the knot become a little bit smaller. I spent a great of amount of time repeating that visual exercise. When I was done meditating, the pain in my back and the knot were gone entirely. I didn’t have any problems with it after that. To me, this was an amazing example of how powerful the mind can be.
Since around 2010 I’ve been seeing a neuropsychologist. He’s been guiding me in the practice of meditation. I feel as though I’ve just begun a journey that has been, and will yet be, very fruitful. In addition to the pain relief I’ve been receiving from daily meditation, my overall sense of wellbeing has improved. I find I am generally calmer and less irritable. I encourage you to experiment with daily meditation. You may similarly find it rewarding in more ways than one.
I typically meditate three times a day and always do so before I take pain medication. I begin my fifteen to twenty-minute meditation sessions by sitting in a comfortable chair. I put a pillow behind my head so I am able to completely relaxed. I start by taking several deep breaths in and out. While concentrating on breathing at a slow even rate, I relax all the muscles in my body; this includes releasing the tension in my eyebrows, jaw, facial muscles and shoulders. I try to completely empty my mind of thoughts by focusing entirely on my breathing. Other times I may focus on the rhythm of my heart. I quiet myself to the point of being able to feel my heartbeat in my chest, arms, legs, hands, feet, fingers and toes.
Sometimes I use various visualization exercises similar to what I described in the techniques above. Often I repeat the following phrase in my head, “My mind is calm. My body is relaxed. I am completely relaxed.” I stay in that meditative state until I am thoroughly relaxed and all the pain I felt when I first began my session is either completely removed or significantly reduced. This usually takes ten to twenty minutes to accomplish. I end the session by counting to three and think to myself, “You are wide awake, fully alert and free of discomfort.” I come out of the session feeling refreshed and I’m usually pain free—sometimes for only a few minutes, other times it lasts hours.
To show how effective meditation can be, I’ll share an experience I recently had. One morning I awoke with a terrible knot in the kidney area of my lower back. The muscles were so tense it was like having a tennis ball stuck in my back. It was very uncomfortable and lasted for a day. The next morning the knot was still there. So I decided to try something in my morning meditation session.
I sat in my chair and went through all the relaxation excises I’ve described. With my eyes closed, I envisioned my back in as much as detail as possible. Then, like a computer-generated image, I removed the skin from my back one layer at a time until I could see all the muscles—sounds gross, I know. I then focused on that spot in my back and pictured a tense knotted muscle mass.
Next I visualized a warm clothing iron being pressed down on that area of my back. In my mind I ironed over the knot again and again. Each time I went over the knot, I saw the muscles relax and the knot become a little bit smaller. I spent a great of amount of time repeating that visual exercise. When I was done meditating, the pain in my back and the knot were gone entirely. I didn’t have any problems with it after that. To me, this was an amazing example of how powerful the mind can be.
Since around 2010 I’ve been seeing a neuropsychologist. He’s been guiding me in the practice of meditation. I feel as though I’ve just begun a journey that has been, and will yet be, very fruitful. In addition to the pain relief I’ve been receiving from daily meditation, my overall sense of wellbeing has improved. I find I am generally calmer and less irritable. I encourage you to experiment with daily meditation. You may similarly find it rewarding in more ways than one.
Things to Remember
If you find my methods of mentally controlling pain don’t work for you, try to come up with your own techniques. You might want to see what books you can read on the subject of pain relief through meditation or self-hypnosis. Your doctor may be able to help you find somebody to teach you more effective methods. The knowledge and experience you gain could be of aid to you for the rest of your life and help you endure even the most intense pain.
Just remember what I said earlier. Though pain relief through meditation can be a powerful means of coping with pain, it’s no substitute for professional medical attention and proper use of prescription medication. Don’t ignore persistent pain without seeing a doctor because your body may be trying to tell you something like, “Pull your hand out of that tub of boiling acid fool!”
Just remember what I said earlier. Though pain relief through meditation can be a powerful means of coping with pain, it’s no substitute for professional medical attention and proper use of prescription medication. Don’t ignore persistent pain without seeing a doctor because your body may be trying to tell you something like, “Pull your hand out of that tub of boiling acid fool!”
Don't Give Into the Pain
Living with chronic pain, it can be easy to give into that pain. By this I mean it’s easy to become short tempered, impatient and irritable, all without knowing it or meaning to, just ask my family. Allowing these feelings to rule the person you truly are only makes life difficult for the people around you. It’s also harmful to your emotional, spiritual, and physical health. You can prevent this by finding healthy activities to replace the negative elements in your life. I’ll talk more about this in the section titled, “Finding an Outlet.”
The desire to withdraw from friends or family while in pain can be a common and understandable feeling. However, this may not always be the best thing for you emotionally. You don’t want to end up talking to a volleyball named Wilson with a face painted on it. Not giving into your pain also means not pushing away the people close to you.
When in crisis, leaving the house to socialize may not always be the wisest thing to do. Instead, invite friends to come over to your house. At home you have control over the many things that may be out of your control someplace else. For instance, if you entertain at your place you control:
➢ How warm or cold your home is
➢ What kind of things you are going to do for fun
(This way you don’t have to worry about being pressured into doing an activity that may be too physically demanding for how you feel at the moment.)
➢ How many people come over, and
➢ Which people come over
(By controlling who comes over, you’re less likely to have an unexpected stressful encounter with somebody you clash with, which can add pain to your crisis.)
At home, in addition to the above, you have available all the water, food, medication, or other essentials you might need. Having a crisis doesn’t necessarily mean you can’t socialize. It just means you have to plan things around your health.
The desire to withdraw from friends or family while in pain can be a common and understandable feeling. However, this may not always be the best thing for you emotionally. You don’t want to end up talking to a volleyball named Wilson with a face painted on it. Not giving into your pain also means not pushing away the people close to you.
When in crisis, leaving the house to socialize may not always be the wisest thing to do. Instead, invite friends to come over to your house. At home you have control over the many things that may be out of your control someplace else. For instance, if you entertain at your place you control:
➢ How warm or cold your home is
➢ What kind of things you are going to do for fun
(This way you don’t have to worry about being pressured into doing an activity that may be too physically demanding for how you feel at the moment.)
➢ How many people come over, and
➢ Which people come over
(By controlling who comes over, you’re less likely to have an unexpected stressful encounter with somebody you clash with, which can add pain to your crisis.)
At home, in addition to the above, you have available all the water, food, medication, or other essentials you might need. Having a crisis doesn’t necessarily mean you can’t socialize. It just means you have to plan things around your health.
Be Responsible
Living with chronic pain obviously means frequently taking pain medication. Part of accepting your illness and living with discomfort is learning to be responsible with your medications. In addition to the things I’ve already discussed, there are other precautions to consider. For example, if old enough to drive, you need to be aware of: (1) how your medication may be currently impairing your judgment, (2) how it could affect you when it kicks in later, and (3) what you’ll be doing when it starts working. Always keep these things in mind before getting behind the wheel of a car. You don’t want to become drowsy while driving.
Driving under the influence not only includes alcohol, but any substance that impairs judgment. When medicated, be responsible and choose not to drive when your judgment is diminished. This may mean having somebody else take you places. Though it might stink to have to rely on others in this manner, for safety’s sake, that’s what needs to be done.
Another part of being responsible with your pain medications is not taking more than what’s necessary. Take whatever measures you need to ensure you don’t overdose; that can be a fatal mistake. Being responsible with your medications also includes not taking them with alcohol or recreational drugs. Mixing prescriptions with these substances can have lethal consequences. The news frequently announces the accidental death of a celebrity that mixed prescription medication with alcohol.
Driving under the influence not only includes alcohol, but any substance that impairs judgment. When medicated, be responsible and choose not to drive when your judgment is diminished. This may mean having somebody else take you places. Though it might stink to have to rely on others in this manner, for safety’s sake, that’s what needs to be done.
Another part of being responsible with your pain medications is not taking more than what’s necessary. Take whatever measures you need to ensure you don’t overdose; that can be a fatal mistake. Being responsible with your medications also includes not taking them with alcohol or recreational drugs. Mixing prescriptions with these substances can have lethal consequences. The news frequently announces the accidental death of a celebrity that mixed prescription medication with alcohol.
Be Disciplined
My final comments about pain management have to do with self-discipline. It is an unavoidable truth that the human body eventually builds up a tolerance to medications. For example, if I daily take five milligrams of methadone every four hours, it will only be a matter of time before I cease to find relief from that medication at that dosage like I once did. Eventually the dosage will have to be increased or changed.
The rate at which my body builds up a tolerance to the painkillers I’m taking is something I have fought against my entire life. This is the direct result of an experience I had when I was sixteen years old and had my gallbladder removed. As so often is the case with me, there were complications to this “simple procedure.” Painkillers were of course given for post-operative pain. Due to the length of time I was on them and the quantities given, my body become somewhat addicted to Demoral. When it came time to take me off this medication, I began to experience terrifying withdrawals. I recall I was unable to control my emotions; I went from sad, to angry, to sobbing in the matter of moments. This was accompanied with vivid hallucinations of bugs crawling on the walls that I thought were moving.
As terrible as that experience was, I’m grateful for it. It showed me how easy it is to fall into the trap of addiction. It caused me to actively fight against developing an addiction to the pain medications I take, and made me very conscious of the rate at which my body builds up tolerances to those medications.
Before taking any of my pain killers, I always ask myself, “Though I can take my pain medication now, do I really need to? Can I wait another thirty minutes, hour, or longer before taking it? Do I need to take two pain pills or will one do just fine?” I do my best to control my pain and pill intake rather than allowing them to control me. As a result of using meditation and disciplining myself, I’ve been able to avoid building up tolerances to my pain medications. I’ve been on the same dosage for nearly ten years; and that’s something my doctor at the pain clinic marvels at.
“According to the 2006 National Survey on Drug Use and Health, teens abuse prescription medications more than all illegal drugs combined, excluding marijuana.” Abuse of prescription pain medication is a serious problem in our country for adults and teens. Though painkillers can help manage chronic pain, wisdom must always be used.
Managing chronic pain can be emotionally and physically taxing. Taking control of your pain and the medications you use to relieve it, is vital to your well-being. Fight the urge to take painkillers to get rid of pain you really can endure, and do everything you can to protect yourself from addiction. By learning to cope with and control your discomfort, you are well on your way to living well with Sickle Cell.
The rate at which my body builds up a tolerance to the painkillers I’m taking is something I have fought against my entire life. This is the direct result of an experience I had when I was sixteen years old and had my gallbladder removed. As so often is the case with me, there were complications to this “simple procedure.” Painkillers were of course given for post-operative pain. Due to the length of time I was on them and the quantities given, my body become somewhat addicted to Demoral. When it came time to take me off this medication, I began to experience terrifying withdrawals. I recall I was unable to control my emotions; I went from sad, to angry, to sobbing in the matter of moments. This was accompanied with vivid hallucinations of bugs crawling on the walls that I thought were moving.
As terrible as that experience was, I’m grateful for it. It showed me how easy it is to fall into the trap of addiction. It caused me to actively fight against developing an addiction to the pain medications I take, and made me very conscious of the rate at which my body builds up tolerances to those medications.
Before taking any of my pain killers, I always ask myself, “Though I can take my pain medication now, do I really need to? Can I wait another thirty minutes, hour, or longer before taking it? Do I need to take two pain pills or will one do just fine?” I do my best to control my pain and pill intake rather than allowing them to control me. As a result of using meditation and disciplining myself, I’ve been able to avoid building up tolerances to my pain medications. I’ve been on the same dosage for nearly ten years; and that’s something my doctor at the pain clinic marvels at.
“According to the 2006 National Survey on Drug Use and Health, teens abuse prescription medications more than all illegal drugs combined, excluding marijuana.” Abuse of prescription pain medication is a serious problem in our country for adults and teens. Though painkillers can help manage chronic pain, wisdom must always be used.
Managing chronic pain can be emotionally and physically taxing. Taking control of your pain and the medications you use to relieve it, is vital to your well-being. Fight the urge to take painkillers to get rid of pain you really can endure, and do everything you can to protect yourself from addiction. By learning to cope with and control your discomfort, you are well on your way to living well with Sickle Cell.
Don't Ignore the Problem
Accepting the reality that you have an illness, which has to be wisely managed on a daily basis, is not always an easy thing to do. As a result, some people choose to become unpleasant individuals. They may allow anger and negativity to be the driving forces in their life. Opting to have this kind of attitude is not only harmful to you and damaging to your quest for a life of peace, but it also hurts everybody around you.
For me, accepting my illness includes: choosing to be open about it with those who know me; acknowledging that there’s no shame in saying, “I have an illness that affects every aspect of my life;” it means finding ways to make peace with the various complications that come with having Sickle Cell Disease. I’ve accepted the fact that there are times when I am able to do the things asked of me—as well as the things I want to do—and there are times when I can’t. This is the reality of my situation and I’m at peace with it. Most of the time.
I think it’s important to ask yourself, “What does it mean to accept my illness?” and “Have I accepted mine?” Both require that you look inward to answer.
Part of accepting your health condition comes by not ignoring it. If you're reading this blog, I think it’s a pretty good indication that you have, or are at least trying, to come to terms with this thing called Sickle Cell.
When people ignore their problems, often they hope the issue will go away on its own. They do what they want to do in spite of the consequences, believing there will be no consequences. What ends up happening is they magnify the problem and make things worse for themselves. After all, you wouldn’t ignore a broken arm with a bone sticking out through the skin and hope it self-corrects. So, why ignore Sickle Cell? It can be just as dangerous if not given proper attention.
Accepting your illness also means learning to manage it. It means making whatever adjustments you need to so you can be as healthy as possible.
For me, accepting my illness includes: choosing to be open about it with those who know me; acknowledging that there’s no shame in saying, “I have an illness that affects every aspect of my life;” it means finding ways to make peace with the various complications that come with having Sickle Cell Disease. I’ve accepted the fact that there are times when I am able to do the things asked of me—as well as the things I want to do—and there are times when I can’t. This is the reality of my situation and I’m at peace with it. Most of the time.
I think it’s important to ask yourself, “What does it mean to accept my illness?” and “Have I accepted mine?” Both require that you look inward to answer.
Part of accepting your health condition comes by not ignoring it. If you're reading this blog, I think it’s a pretty good indication that you have, or are at least trying, to come to terms with this thing called Sickle Cell.
When people ignore their problems, often they hope the issue will go away on its own. They do what they want to do in spite of the consequences, believing there will be no consequences. What ends up happening is they magnify the problem and make things worse for themselves. After all, you wouldn’t ignore a broken arm with a bone sticking out through the skin and hope it self-corrects. So, why ignore Sickle Cell? It can be just as dangerous if not given proper attention.
Accepting your illness also means learning to manage it. It means making whatever adjustments you need to so you can be as healthy as possible.
Managing Your Disease
When I was about twenty-five, I made a routine visit to my heart doctor. A blood test revealed that my potassium level was dangerously high. I was about one point away from having a heart attack. My doctor immediately put me on various medications and told me I had to stop eating high potassium foods like tomatoes, potatoes and, basically, all fruit except apples and grapes. Needless to say, I was kind of upset. All these forbidden foods were things I loved to eat and did so often.
For a time I was really angry and depressed because I loved those foods and didn’t want to give up yet another enjoyment in life; but I had little choice. With time, as my potassium level returned to normal, I learned I could still eat those favorite foods, as long as I did so in small amounts and only occasionally. Just don’t tell my heart doctor. Still to this day I enjoy those foods, but I’m wise and cautious not to eat them too frequently or in excess. Because I’m careful, my potassium level is still were it ought to be.
There are many things like this in my life, as I’m sure there are in yours; adjustments you’ve had to make in order to manage your illness. The process of change can sometimes be a bumpy emotional journey, especially in the beginning. However, if you educate yourself and learn to adapt when necessary while keeping a positive attitude, the journey won’t be as difficult.
For a time I was really angry and depressed because I loved those foods and didn’t want to give up yet another enjoyment in life; but I had little choice. With time, as my potassium level returned to normal, I learned I could still eat those favorite foods, as long as I did so in small amounts and only occasionally. Just don’t tell my heart doctor. Still to this day I enjoy those foods, but I’m wise and cautious not to eat them too frequently or in excess. Because I’m careful, my potassium level is still were it ought to be.
There are many things like this in my life, as I’m sure there are in yours; adjustments you’ve had to make in order to manage your illness. The process of change can sometimes be a bumpy emotional journey, especially in the beginning. However, if you educate yourself and learn to adapt when necessary while keeping a positive attitude, the journey won’t be as difficult.
Do What You Must
The idea of doing what you must for the good of your health goes right along with “Managing Your Disease.” This means doing what is necessary to stay healthy without feeling guilty or ashamed about doing so. Now, I’m not saying you should cop an attitude, and demand everybody bow down at your command to fulfill your every need, though that might be nice. What I mean is this.
If you’re in school and have special privileges to eat and drink in class—a topic I will discuss further in Section 15" "Going to School"—don’t be embarrassed about using those necessary privileges. If you have an open pass to go to the restroom as you need, use it responsibly and don’t feel bad for doing so. If you have a need to take a coat with you everywhere you go so you don’t get cold, try not to worry about what others think. If you are out with friends and need to stop to eat or rest, speak up and take care of yourself.
Do what you need to do to stay healthy. Take care of your body and medical needs. Don’t risk a pain crisis or hospitalization. Chances are, if you’re open about your health problems with your friends—which I’ll talk more about in Section 7: "Telling People You Have Sickle Cell"—you won’t have to worry about being embarrassed. Your friends will want to help you stay healthy.
If you’re in school and have special privileges to eat and drink in class—a topic I will discuss further in Section 15" "Going to School"—don’t be embarrassed about using those necessary privileges. If you have an open pass to go to the restroom as you need, use it responsibly and don’t feel bad for doing so. If you have a need to take a coat with you everywhere you go so you don’t get cold, try not to worry about what others think. If you are out with friends and need to stop to eat or rest, speak up and take care of yourself.
Do what you need to do to stay healthy. Take care of your body and medical needs. Don’t risk a pain crisis or hospitalization. Chances are, if you’re open about your health problems with your friends—which I’ll talk more about in Section 7: "Telling People You Have Sickle Cell"—you won’t have to worry about being embarrassed. Your friends will want to help you stay healthy.
It's a Part of You
I want you to understand, Sickle Cell Anemia does not define you as a person. You are not a disease. It is, however, a big part of who you are. Living with the burden of Sickle Cell certainly does have a massive impact on you as an individual. It can shape your perspective in life and your view of the world. Though your illness does influence you in these and many other ways, you have a choice; you decide who you are as a person; you decide how Sickle Cell shapes your personality. Will you allow it to make you angry and bitter? I’ve seen this first hand and it’s what motivated to me to create this blog. Or will you use your illness to become a compassionate human being?
Through the things you endure as a result of living with Sickle Cell, you are given an opportunity to grow in ways most people don’t. Perhaps you, like I, at a very young age have learned life lessons and observed the human condition in ways many people never will. Let these experiences shape your character in favorable ways. Use those experiences to help other people. In doing so, your ability to patiently endure your trials will be increased and you will become a positive, rather than a negative, influence to the people in your life.
Through the things you endure as a result of living with Sickle Cell, you are given an opportunity to grow in ways most people don’t. Perhaps you, like I, at a very young age have learned life lessons and observed the human condition in ways many people never will. Let these experiences shape your character in favorable ways. Use those experiences to help other people. In doing so, your ability to patiently endure your trials will be increased and you will become a positive, rather than a negative, influence to the people in your life.
Control in Your Life
The only predictable thing about living with Sickle Cell is that it’s unpredictable. Learning to live with this unpredictability is another aspect of accepting your illness. It’s human nature to want to control the things in our life. Speaking from personal experience, I know how easy it is to believe you have no control over your health, body or existence. It can be a frustrating and helpless feeling. The truth is you have the most important kind of control. You have control over yourself and how you manage your health. You control how you act and react to things. You control how you treat other people.
While you may not be able to govern when you have a crisis or how you physically feel one hour to the next, you are in charge of how you deal those crises. Self-control is of the greatest importance in life. So, in the words of Yoda, “Control, control, you must learn control.” Yes, I admit it. I’m a Star Wars freak.
Exercising self-control over one’s temper, diet, words, thoughts, actions, and countless other things, is a necessary part of life. It’s especially critical for those of us living with a chronic illness. For example, failing to use wisdom when playing sports can lead to unnecessary hospitalization. Lacking the resolve to stay home when you’re having a crisis can cause greater pain. It’s through self-discipline that you’ll be able to enjoy greater stability of health.
Nearly everything I share with you is linked one way or another to control. As you continue to read, try to think of ways you may be able to improve your life by regulating certain actions or habits that may be harmful to your wellbeing. It’s my hope that as you do so it will be less challenging to find joy in your life.
While you may not be able to govern when you have a crisis or how you physically feel one hour to the next, you are in charge of how you deal those crises. Self-control is of the greatest importance in life. So, in the words of Yoda, “Control, control, you must learn control.” Yes, I admit it. I’m a Star Wars freak.
Exercising self-control over one’s temper, diet, words, thoughts, actions, and countless other things, is a necessary part of life. It’s especially critical for those of us living with a chronic illness. For example, failing to use wisdom when playing sports can lead to unnecessary hospitalization. Lacking the resolve to stay home when you’re having a crisis can cause greater pain. It’s through self-discipline that you’ll be able to enjoy greater stability of health.
Nearly everything I share with you is linked one way or another to control. As you continue to read, try to think of ways you may be able to improve your life by regulating certain actions or habits that may be harmful to your wellbeing. It’s my hope that as you do so it will be less challenging to find joy in your life.
Right to Find a Doctor You Can Trust
I’m by no means a lawyer and this book certainly cannot be considered the bible of legal medical advice. Rather, these are the things I’ve experienced throughout my life that I feel all patients need to be aware of. Parents and patients need to know their rights and not be afraid to properly exercise them.
First, you have the right to be seen and treated by a doctor you can trust. I have been blessed with the same Sickle Cell doctor for the past twenty-five years. He’s a gentle, kind, and caring man by the name of Dr. Antranik A. Bedros MD. Through his extensive knowledge of Sickle Cell Disease and how it uniquely affects me, he has been instrumental in preserving my life.
Dr. Bedros always made sure my parents and I understood why he was recommending a procedure or treatment. He made certain we understood everything correctly and the risks involved, if any. He also kept us informed about the latest treatments. If by chance Dr. Bedros didn’t have a solution to one of my medical problems, he researched it, and consulted with other doctors throughout the country.
When choosing your doctors, remember you are putting your life in their hands. The doctor you choose, in all reality, could be the difference between life and death, or hope and despair.
I once read a heart-breaking account on a Sickle Cell forum from a young man. Every time he went to see his doctor, the physician and his nurses treated him as though it was going to be their last time seeing him alive. The doctor and his staff believed this young man should go home and prepare for death because, in their opinion, he “didn’t have much time left.” This was his experience for many, many, many years.
Not only was I terribly saddened for this individual, but I was horrified by the story. I couldn’t conceive how a doctor could break the oath “to do no harm” in such a manner. No patient should have to leave his/her doctor’s office in a state of despair. There is always hope, and it’s a doctor’s job to help instill that glimmer of hope in you.
If you feel your doctor is doing more harm than good, either to your mind or your body, if you think he/she doesn’t have a proper understanding of Sickle Cell or there are other issues that make you distrust your doctor’s judgment, know you have the right to find a doctor you can have confidence in.
First, you have the right to be seen and treated by a doctor you can trust. I have been blessed with the same Sickle Cell doctor for the past twenty-five years. He’s a gentle, kind, and caring man by the name of Dr. Antranik A. Bedros MD. Through his extensive knowledge of Sickle Cell Disease and how it uniquely affects me, he has been instrumental in preserving my life.
Dr. Bedros always made sure my parents and I understood why he was recommending a procedure or treatment. He made certain we understood everything correctly and the risks involved, if any. He also kept us informed about the latest treatments. If by chance Dr. Bedros didn’t have a solution to one of my medical problems, he researched it, and consulted with other doctors throughout the country.
When choosing your doctors, remember you are putting your life in their hands. The doctor you choose, in all reality, could be the difference between life and death, or hope and despair.
I once read a heart-breaking account on a Sickle Cell forum from a young man. Every time he went to see his doctor, the physician and his nurses treated him as though it was going to be their last time seeing him alive. The doctor and his staff believed this young man should go home and prepare for death because, in their opinion, he “didn’t have much time left.” This was his experience for many, many, many years.
Not only was I terribly saddened for this individual, but I was horrified by the story. I couldn’t conceive how a doctor could break the oath “to do no harm” in such a manner. No patient should have to leave his/her doctor’s office in a state of despair. There is always hope, and it’s a doctor’s job to help instill that glimmer of hope in you.
If you feel your doctor is doing more harm than good, either to your mind or your body, if you think he/she doesn’t have a proper understanding of Sickle Cell or there are other issues that make you distrust your doctor’s judgment, know you have the right to find a doctor you can have confidence in.
Right to a Second Opinion
As I already mentioned, when I was nine years old I had a severe stroke. I was extremely blessed to have made a full recovery from that horrid event. While recuperating, just before I was released from the hospital, my parents were approached by my then new physician, Dr. Bedros. To prevent another stroke from occurring he advised my parents that I should begin blood transfusion therapy. In 1982 this was a new form of treatment in Sickle Cell healthcare. My parents had their concerns and desired a second opinion.
They met with a different doctor at another major hospital. This doctor told my parents she didn’t believe blood transfusion therapy was a treatment that would help prevent a second stroke from occurring. She advised my parents to take me home and wait for me to have another stroke. In her opinion, a second stroke was unavoidable and certain. Needless to say, my parents weren’t going to do that. After much consideration, I began receiving monthly blood transfusions—or “oil changes” as we liked to call them—and I continued receiving them for seven years. I’ve been fortunate to avoid any additional strokes.
I share this with you to show how useful it can be to seek other professional opinions when making major medical decisions. One doctor may be of a certain opinion about your healthcare while another could feel very differently. Carefully consider all the options available to you and weigh the good with the bad. Do your best to be as informed as possible and choose wisely which doctor to put your trust in.
They met with a different doctor at another major hospital. This doctor told my parents she didn’t believe blood transfusion therapy was a treatment that would help prevent a second stroke from occurring. She advised my parents to take me home and wait for me to have another stroke. In her opinion, a second stroke was unavoidable and certain. Needless to say, my parents weren’t going to do that. After much consideration, I began receiving monthly blood transfusions—or “oil changes” as we liked to call them—and I continued receiving them for seven years. I’ve been fortunate to avoid any additional strokes.
I share this with you to show how useful it can be to seek other professional opinions when making major medical decisions. One doctor may be of a certain opinion about your healthcare while another could feel very differently. Carefully consider all the options available to you and weigh the good with the bad. Do your best to be as informed as possible and choose wisely which doctor to put your trust in.
Right to Refuse Treatments
When you become an adult, you will be responsible for your own care and will have the right to refuse any form of medical treatment you don’t want to have. You will also have the right to refuse being seen by a doctor or nurse you may have issues with. This means, if your doctor wants to try a new brain-transplant procedure on you, it’s your right to say no. Though I’ve never had to refuse brain transplantation—which, now that I think of it, could be a nice way of curing Sickle Cell Disease—I have had to refuse medical procedures and reject treatment from certain doctors.
I began going to a pain clinic in my mid-twenties. In the beginning, I kept butting heads with the doctor that was treating me. I’ll call her Dr. Nutzo. She insisted that I be admitted to the hospital every time I suffered a Sickle Cell pain crisis. This was a ridiculous statement that Dr. Bedros thought to be equally absurd. “If I were hospitalized every time I had a pain crisis, I would live in the hospital,” I exclaimed to her.
Upon my second visit with Dr. Nutzo, she persisted in telling me I had to be admitted to the hospital every time I suffer a pain crisis. It became very clear to me how truly ignorant she was about the nature of Sickle Cell Disease and how to best treat it. By the end of the second visit to the pain clinic I told Dr. Nutzo, “I refuse to be treated by you.” Actually, I had to tell her over and over and over again until she left the room and brought in another doctor. He was a physician whose judgment I eventually trusted and remained his patient for several years.
During one of my hospitalizations in my twenties, I was admitted with various symptoms. The doctor on duty that night was adamant that I needed a spinal tap to rule out Spinal Meningitis. I knew I sometimes showed the symptoms of this very serious illness and I refused the spinal tap at that time. I told the doctor, “If Dr. Bedros says I need a spinal tap, then I’ll do it, but not without his recommendation.”
Dr. Bedros wasn’t on call that night and it meant waiting until morning to see if he agreed with her assessment. Again I had to forcefully refuse this treatment despite the scare tactics used by this young doctor. Needless to say, I waited despite her protest. In the morning when Dr. Bedros made his rounds, he reassured me that I did not need a spinal tap. I thought it humorous that I never again saw that young doctor during my weeklong hospitalization.
I share these two events with you to illustrate how necessary it is to stand up for yourself. Learn to do what is best for you. You can’t afford to be passive about your healthcare and allow doctors, nurses, or phlebotomists (those who take your blood) do whatever they please to your body whenever they want. You aren’t a lab rat to be experimented on. Know when to exercise faith in your medical professionals and when to resist their ignorance, over-eagerness, poor judgment, or arrogance.
If you are currently a minor, you can help your parents by being open with your thoughts and feelings. Talk with your parents and tell them what you do and don’t want done in your healthcare. Together, as a family, you can decide what’s right for you.
I began going to a pain clinic in my mid-twenties. In the beginning, I kept butting heads with the doctor that was treating me. I’ll call her Dr. Nutzo. She insisted that I be admitted to the hospital every time I suffered a Sickle Cell pain crisis. This was a ridiculous statement that Dr. Bedros thought to be equally absurd. “If I were hospitalized every time I had a pain crisis, I would live in the hospital,” I exclaimed to her.
Upon my second visit with Dr. Nutzo, she persisted in telling me I had to be admitted to the hospital every time I suffer a pain crisis. It became very clear to me how truly ignorant she was about the nature of Sickle Cell Disease and how to best treat it. By the end of the second visit to the pain clinic I told Dr. Nutzo, “I refuse to be treated by you.” Actually, I had to tell her over and over and over again until she left the room and brought in another doctor. He was a physician whose judgment I eventually trusted and remained his patient for several years.
During one of my hospitalizations in my twenties, I was admitted with various symptoms. The doctor on duty that night was adamant that I needed a spinal tap to rule out Spinal Meningitis. I knew I sometimes showed the symptoms of this very serious illness and I refused the spinal tap at that time. I told the doctor, “If Dr. Bedros says I need a spinal tap, then I’ll do it, but not without his recommendation.”
Dr. Bedros wasn’t on call that night and it meant waiting until morning to see if he agreed with her assessment. Again I had to forcefully refuse this treatment despite the scare tactics used by this young doctor. Needless to say, I waited despite her protest. In the morning when Dr. Bedros made his rounds, he reassured me that I did not need a spinal tap. I thought it humorous that I never again saw that young doctor during my weeklong hospitalization.
I share these two events with you to illustrate how necessary it is to stand up for yourself. Learn to do what is best for you. You can’t afford to be passive about your healthcare and allow doctors, nurses, or phlebotomists (those who take your blood) do whatever they please to your body whenever they want. You aren’t a lab rat to be experimented on. Know when to exercise faith in your medical professionals and when to resist their ignorance, over-eagerness, poor judgment, or arrogance.
If you are currently a minor, you can help your parents by being open with your thoughts and feelings. Talk with your parents and tell them what you do and don’t want done in your healthcare. Together, as a family, you can decide what’s right for you.
Right To Ask Questions and Get Your Questions Answered
You have the right to ask your doctors and nurses all the questions you want and need in order to fully understand everything about your care. Questions like:
➢ Why are we trying this treatment?
➢ How is it going to help me?
➢ What are the risks involved?
➢ What happens to my health if I refuse this treatment?
➢ What is the recovery time?
➢ Are there any side effects?
My experience has been that most doctors like to make sure their patients understand everything that was discussed in the visit. They’ll spend whatever time is necessary to make sure this occurs. Some doctors, however, because they have fifty other patients to see or are simply impatient, tend to rush things. They may not take the time they should with their patients. So what do you do if your physician is Dr. In A. Rush? You make him spend time with you.
If it looks like your doctor is in a hurry to get you in and out of his office, quickly say, “Wait, I still have questions,” and start asking them. Tell him/her, “I don’t quite understand this,” or “I need you to explain that to me again.” There’s no shame in doing this. Don’t be embarrassed. Don’t be timid. It’s your appointment. Your health and life are on the line. Make sure you get your questions and concerns resolved. If nothing else works you could always chain him to the examination table until he answers your questions. But I would use that as a last resort; it might be hard to get a return appointment.
To make certain I fully understand what my doctor has told me, I always explain everything back to him in my own words. This validates to him I understood what was said. It also reassures me that I comprehended everything discussed; it also helps me remember what we talked about.
➢ Why are we trying this treatment?
➢ How is it going to help me?
➢ What are the risks involved?
➢ What happens to my health if I refuse this treatment?
➢ What is the recovery time?
➢ Are there any side effects?
My experience has been that most doctors like to make sure their patients understand everything that was discussed in the visit. They’ll spend whatever time is necessary to make sure this occurs. Some doctors, however, because they have fifty other patients to see or are simply impatient, tend to rush things. They may not take the time they should with their patients. So what do you do if your physician is Dr. In A. Rush? You make him spend time with you.
If it looks like your doctor is in a hurry to get you in and out of his office, quickly say, “Wait, I still have questions,” and start asking them. Tell him/her, “I don’t quite understand this,” or “I need you to explain that to me again.” There’s no shame in doing this. Don’t be embarrassed. Don’t be timid. It’s your appointment. Your health and life are on the line. Make sure you get your questions and concerns resolved. If nothing else works you could always chain him to the examination table until he answers your questions. But I would use that as a last resort; it might be hard to get a return appointment.
To make certain I fully understand what my doctor has told me, I always explain everything back to him in my own words. This validates to him I understood what was said. It also reassures me that I comprehended everything discussed; it also helps me remember what we talked about.
Right to be Treated Fairly, Respectfully and Equally as a Patient
We are blessed to live in an age where patients have all sorts of rights. In addition to the others I’ve covered in this chapter, the right to be treated with fairness and equality are among them.
Let’s face it, your loved ones can’t always be with you in the hospital. As you grow older it probably isn’t as necessary as it once was to have your parents always at your bedside. Occasionally, you may encounter a medical professional that behaves one way when your parents are present and another way when they aren’t. If you find you are not being dealt with respectfully, don’t hesitate to tell your parents, guardians or somebody in charge.
This happened to me on occasion when I was young. There where times when a certain nurse or phlebotomist routinely behaved unprofessionally when working with me. Some of these people were unskilled at their job and had an unpleasant attitude to go along with it. At first I was hesitant to say anything because I liked to avoid conflict and didn’t want to get anybody in trouble—I grew out of that.Eventually I learned how important it was to inform my parents. I discovered if I didn’t speak up, the problem wouldn’t go away. Instead it only grew worse.
If something like this happens to you, do yourself a favor and tell your parents. Maybe the person taking your blood was being disrespectful toward you; perhaps a neglectful nurse needs a good talking to by their boss; or maybe you were acting out and had it coming. Whatever the cause is of mistreatment, your family needs and wants to know. You don’t have to put up with ill-treatment or neglect.
Just understand, regardless of your age, despite the illness you have, or what color your skin is, you have the right to be treated with the same respect as any other patient. Remember, if you aren’t able to stand up against the injustices that may occur against you, help those who love and care for you so they can.
Let’s face it, your loved ones can’t always be with you in the hospital. As you grow older it probably isn’t as necessary as it once was to have your parents always at your bedside. Occasionally, you may encounter a medical professional that behaves one way when your parents are present and another way when they aren’t. If you find you are not being dealt with respectfully, don’t hesitate to tell your parents, guardians or somebody in charge.
This happened to me on occasion when I was young. There where times when a certain nurse or phlebotomist routinely behaved unprofessionally when working with me. Some of these people were unskilled at their job and had an unpleasant attitude to go along with it. At first I was hesitant to say anything because I liked to avoid conflict and didn’t want to get anybody in trouble—I grew out of that.Eventually I learned how important it was to inform my parents. I discovered if I didn’t speak up, the problem wouldn’t go away. Instead it only grew worse.
If something like this happens to you, do yourself a favor and tell your parents. Maybe the person taking your blood was being disrespectful toward you; perhaps a neglectful nurse needs a good talking to by their boss; or maybe you were acting out and had it coming. Whatever the cause is of mistreatment, your family needs and wants to know. You don’t have to put up with ill-treatment or neglect.
Just understand, regardless of your age, despite the illness you have, or what color your skin is, you have the right to be treated with the same respect as any other patient. Remember, if you aren’t able to stand up against the injustices that may occur against you, help those who love and care for you so they can.
Questions and Your Medications
Until you are eighteen years old, your parents probably will be the ones making the tough choices about your health care. However, it’s good to prepare yourself for the day when you’ll be responsible for making those decisions yourself. For this reason, I strongly encourage you to be part of what your parents and doctors are discussing now. Don’t be a quiet observer like a fly on the wall, but an active participant in the process. Ask questions about the things you don’t understand. If you want to talk about with your doctor about something, don’t be too embarrassed or shy to do so.
When it comes to the medicine and treatments you receive, asking plenty of questions is not only your right, it’s your responsibility. For example, some of the things that need to be asked when given a new prescription are:
➢ How much do I take at one time?
➢ How many times a day should I take it?
➢ What time of day do I take it?
➢ How long do I take it?
➢ How is this medication going to help me?
➢ What kind of side effects should I watch out for?
➢ What are the long-term side effects?
➢ Do I need to eat something before I take this medicine?
➢ Are there any other special instructions?
➢ How will this medication interact with my other prescriptions?
Having the answers to these and other questions is very important. Knowing how many pills to take and when, will keep you from accidentally overdosing. Taking too little can prevent the medication from working correctly. Understanding how your prescriptions are supposed to help you, allows you to be aware of any changes in the way you feel. Keeping your doctor informed about such things enables him/her to determine whether or not the medication is doing the job it’s meant to.
When it comes to the medicine and treatments you receive, asking plenty of questions is not only your right, it’s your responsibility. For example, some of the things that need to be asked when given a new prescription are:
➢ How much do I take at one time?
➢ How many times a day should I take it?
➢ What time of day do I take it?
➢ How long do I take it?
➢ How is this medication going to help me?
➢ What kind of side effects should I watch out for?
➢ What are the long-term side effects?
➢ Do I need to eat something before I take this medicine?
➢ Are there any other special instructions?
➢ How will this medication interact with my other prescriptions?
Having the answers to these and other questions is very important. Knowing how many pills to take and when, will keep you from accidentally overdosing. Taking too little can prevent the medication from working correctly. Understanding how your prescriptions are supposed to help you, allows you to be aware of any changes in the way you feel. Keeping your doctor informed about such things enables him/her to determine whether or not the medication is doing the job it’s meant to.
Side Effects and Your Medications
Some medications can leave you feeling tired and groggy when you first start taking them. It’s important, under the direction of your doctor, to continue taking the medication despite how it may make you feel in the beginning, unless, of course, something is seriously wrong. Obviously you should consult your doctor immediately if you begin having a severe reaction to the medicine. Having said that, often your body simple needs several days, or even weeks, to adjust to it. Eventually, your body will adapt and those negative side effects will begin to diminish. Talk to your doctor if they don’t.
Knowing what side effects to watch out for is of great value. At the age of nine I was once prescribed a certain medication. Behavioral changes were one of the reactions my parents were told to watch out for. While taking this medication, I became unusually short tempered and acted in abnormal ways. After running away from home in a fit of rage and, days later, shooting my B.B. gun at the boy next door—thankfully I missed—my parents quickly took me to my doctor to have my medication changed.
This is a good example of why it’s wise to keep your family informed about the medications you’re taking and the side effects they can cause. If a prescription or treatment is impairing you in some way, you may not always be aware of it. Your loved ones may have to alert you and your doctor to the things that are wrong.
Knowing what side effects to watch out for is of great value. At the age of nine I was once prescribed a certain medication. Behavioral changes were one of the reactions my parents were told to watch out for. While taking this medication, I became unusually short tempered and acted in abnormal ways. After running away from home in a fit of rage and, days later, shooting my B.B. gun at the boy next door—thankfully I missed—my parents quickly took me to my doctor to have my medication changed.
This is a good example of why it’s wise to keep your family informed about the medications you’re taking and the side effects they can cause. If a prescription or treatment is impairing you in some way, you may not always be aware of it. Your loved ones may have to alert you and your doctor to the things that are wrong.
Managing Your Medications
Whether your parents give them to you or you do it on your own, knowing how to manage your medications is a huge part of controlling your illness. Managing your medication means being responsible. This includes taking them as directed, knowing at all times what you’ve taken, when you’ve taken them, and making sure you don’t ever overdose. It also means being honest with your physicians. Each of your doctors must know what the other is prescribing. This helps prevent the mixing of medications that shouldn’t be taken together.
As a teen, you may not have too many prescriptions to juggle, but as an adult that could change. I currently have eleven prescriptions. Some I take in the morning, others in the evening. Some I take daily, others every other day or every three days. Some, like my pain medication, I take four times a day. I have one medication I alternate between taking one and two tablets each day. How do I keep track of it all? It’s simple. I have an organized system that works and I’m careful.
I was going to try to explain the system I use to keep track of all my medications. However, after reading it to my mother, she laughed uncontrollably and was confused by my explanation, which included dice and several week-long pill-boxes. She said, “It sounds like a crap shoot.” So instead of sharing my system, I’ll simply say, it’s important to find a method that works for you.
As a teen, you may not have too many prescriptions to juggle, but as an adult that could change. I currently have eleven prescriptions. Some I take in the morning, others in the evening. Some I take daily, others every other day or every three days. Some, like my pain medication, I take four times a day. I have one medication I alternate between taking one and two tablets each day. How do I keep track of it all? It’s simple. I have an organized system that works and I’m careful.
I was going to try to explain the system I use to keep track of all my medications. However, after reading it to my mother, she laughed uncontrollably and was confused by my explanation, which included dice and several week-long pill-boxes. She said, “It sounds like a crap shoot.” So instead of sharing my system, I’ll simply say, it’s important to find a method that works for you.
The Medication Rule of Three
If you have young siblings, relatives, children, or friends that visit your home, it’s essential to think of safety first. Live by my mother’s Medication Rule of Three. That is, keep all of your medications: (1) out of sight, (2) out of mind, and (3) out of reach of other people. You can’t be too cautious, especially when there are little children in the home. A little bit of safety can go a long way in preventing tragedy.
The Medication Rule of Three applies at all times, even if you don’t have children in your home. Often you have to follow these rules to protect your prescriptions from people who may want to help themselves.
Tylenol #3, Vicodin, Percodan, and others are common pain relief medications Sickle Cell patients use. As sad as it is, many people are addicted to these types of pills; which is a growing problem in our country. In the year 2008, more than 14,000 people died from overdosing on prescription painkillers. People can often hide their addictions, even from close friends and family members. For this reason, if somebody learns you have such medications in your possession or in your home, and they ask for some, you must tell them no. By keeping your medicine out of sight, others won’t be tempted to take them from you when you’re not looking.
For instance, I often entertain friends in my home. I am careful to not leave my pain medication bottles out in plain view on the coffee table beside the candy dish. Instead I keep them in my room (out of reach) and in a drawer (out of sight). This puts my pain pills “out of the minds” of my guests, and I don’t have to worry about them coming up missing—the pills that is, not my guests.
Lastly, consider these two things. First, if a friend asks for some of your medicine, and though you may know he or she is not an addict, remember your medication is prescribed just for you. You aren’t a doctor. You have no way of knowing how somebody else’s body will react to medicine that’s been adjusted specifically for you. Though your body may respond one way to certain medicine, another person’s body could have a very different reaction. Second, giving your medication to others means you have less when you really need it.
The Medication Rule of Three applies at all times, even if you don’t have children in your home. Often you have to follow these rules to protect your prescriptions from people who may want to help themselves.
Tylenol #3, Vicodin, Percodan, and others are common pain relief medications Sickle Cell patients use. As sad as it is, many people are addicted to these types of pills; which is a growing problem in our country. In the year 2008, more than 14,000 people died from overdosing on prescription painkillers. People can often hide their addictions, even from close friends and family members. For this reason, if somebody learns you have such medications in your possession or in your home, and they ask for some, you must tell them no. By keeping your medicine out of sight, others won’t be tempted to take them from you when you’re not looking.
For instance, I often entertain friends in my home. I am careful to not leave my pain medication bottles out in plain view on the coffee table beside the candy dish. Instead I keep them in my room (out of reach) and in a drawer (out of sight). This puts my pain pills “out of the minds” of my guests, and I don’t have to worry about them coming up missing—the pills that is, not my guests.
Lastly, consider these two things. First, if a friend asks for some of your medicine, and though you may know he or she is not an addict, remember your medication is prescribed just for you. You aren’t a doctor. You have no way of knowing how somebody else’s body will react to medicine that’s been adjusted specifically for you. Though your body may respond one way to certain medicine, another person’s body could have a very different reaction. Second, giving your medication to others means you have less when you really need it.
Keep a List of Your Medications
Each time you go to the doctor or are admitted into the hospital, you’re going to be asked details about the medications you’re taking. I have found it helpful to have a list of all my prescriptions. It’s a list I create on my computer, which I update regularly, print out, and carry with me. On it I detail the name of each prescription, what the dosage is, how often I take it, the name and phone number of the prescribing doctor, as well as the phone number of the pharmacy where I get it filled. I also list the medications I’m allergic to and the phone numbers of family members to contact in case of an emergency.
If I go on a trip with friends, family, or if I spend a lot of time with a particular person, I give them a copy of that list. I also make sure everybody in my house knows where to find it. That way, if I became sick and unable to speak for myself, others have that vital information to give the doctors in the E.R.
Having that list handy when visiting my physician makes things a little more convenient. Rather than trying to recite from memory the pharmacy of medications I’m taking, I simply hand the nurse my prepared list. You may find it useful to make a similar list of the things you are taking. If you are fortunate enough to have a smart phone, it’s easy to use various apps to create a list of your medications. Since you are likely to always have your phone on you, it makes it very convenient to always carry your list of medications with you.
If I go on a trip with friends, family, or if I spend a lot of time with a particular person, I give them a copy of that list. I also make sure everybody in my house knows where to find it. That way, if I became sick and unable to speak for myself, others have that vital information to give the doctors in the E.R.
Having that list handy when visiting my physician makes things a little more convenient. Rather than trying to recite from memory the pharmacy of medications I’m taking, I simply hand the nurse my prepared list. You may find it useful to make a similar list of the things you are taking. If you are fortunate enough to have a smart phone, it’s easy to use various apps to create a list of your medications. Since you are likely to always have your phone on you, it makes it very convenient to always carry your list of medications with you.
Know Your Stats
As strange as this may or may not sound to you, it’s true, your body talks to you. Living with a chronic illness, one of the most important things you can do is listen to your body and know what it’s telling you.
When it comes to the human body, doctors are full of knowledge, and sometimes full of themselves as well. It’s up to you, however, to be an expert about your own body. After all, you have lived with it your entire life, and nobody knows your body better than you.
An important part of knowing your body is being aware of your vital information. Know what your temperature normally when you are and aren’t having a crisis. For instance, I typically run a temperature of 99.9˚ to 101˚ when in crisis. I know if it remains any higher than 101˚ for more than a couple of days I need to see my doctor. A prolonged temperature can be a sign of infection.
Being informed about where your heart rate and blood pressure normally register allow you to monitor your heart function. My blood pressure often hovers around 118 over 60. When the nurses take my blood pressure, they often ask if that’s normal for me. For most people, those numbers would be abnormally low. Because I’m informed about my vital stats, I’m able to keep an over eager nurse from socking me with the defibrillator paddles when she sees how low heart rate is.
When you’re familiar about where your hemoglobin level typically rests, you can prevent a doctor, who’s unfamiliar with your case, from treating you incorrectly. This has happened to me on occasion when I’ve visited a doctor or hospital that was unacquainted with my medical history. Upon seeing my hemoglobin was at 6.2, it was their insistence that I be admitted to receive immediate blood transfusion. Since I knew my hemoglobin at the time hovered around 6.2-6.8, I was able to avoid unnecessary blood transfusion and hospitalization.
Hopefully, from these examples, you can see how important it is to know your vital stats. If you don’t know what yours are, ask your doctor or nurse when you see him/her again. If you’re unsure what those numbers mean, have your doctor explain them to you.
When it comes to the human body, doctors are full of knowledge, and sometimes full of themselves as well. It’s up to you, however, to be an expert about your own body. After all, you have lived with it your entire life, and nobody knows your body better than you.
An important part of knowing your body is being aware of your vital information. Know what your temperature normally when you are and aren’t having a crisis. For instance, I typically run a temperature of 99.9˚ to 101˚ when in crisis. I know if it remains any higher than 101˚ for more than a couple of days I need to see my doctor. A prolonged temperature can be a sign of infection.
Being informed about where your heart rate and blood pressure normally register allow you to monitor your heart function. My blood pressure often hovers around 118 over 60. When the nurses take my blood pressure, they often ask if that’s normal for me. For most people, those numbers would be abnormally low. Because I’m informed about my vital stats, I’m able to keep an over eager nurse from socking me with the defibrillator paddles when she sees how low heart rate is.
When you’re familiar about where your hemoglobin level typically rests, you can prevent a doctor, who’s unfamiliar with your case, from treating you incorrectly. This has happened to me on occasion when I’ve visited a doctor or hospital that was unacquainted with my medical history. Upon seeing my hemoglobin was at 6.2, it was their insistence that I be admitted to receive immediate blood transfusion. Since I knew my hemoglobin at the time hovered around 6.2-6.8, I was able to avoid unnecessary blood transfusion and hospitalization.
Hopefully, from these examples, you can see how important it is to know your vital stats. If you don’t know what yours are, ask your doctor or nurse when you see him/her again. If you’re unsure what those numbers mean, have your doctor explain them to you.
Understand Your Pain
This is another key point to knowing your body. Doctors gain insights about your health when you are able to tell them where your pain is located and what it feels like. For example, it’s important to be able to explain to your doctor how a pain in your stomach is unlike your typical Sickle Cell pain. This will help him/her correctly diagnose if you’re having gallstones or simply ate too much junk food.
If, for example, you are having pain in your hip or back that feels different than a pain crisis, it’s wise to inform your doctor and describe the discomfort. Pain in those areas could be a sign of Avascular Necrosis. Early detection and cautious activity can prevent bigger problems down the road. Learn to understand what your body is trying to communicate to you through your pain.
Admittedly, sometimes it can be difficult to get a doctor to properly understand the pain you are describing. I can’t tell you how many times I’ve had the following conversation when admitted to the ER:
“Are you having chest pains?” The nurse will ask.
“I’m having Sickle Cell pain, which is in my chest, but I’m not having chest pains in the way you mean.”
“So you’re having chest pain?”
“No. I’m having Sickle Cell pain, which happens to be located in my chest at this time,” and round and round we go with that. Typically, they hook me up to an EKG to make certain I’m not having a heart attack. My heart has hurt at times in the past, and that’s a very different feeling pain than Sickle Cell pain. But getting a medical professional to understand that I am able to tell the difference, is sometimes a challenge.
So, know your pain, and do you best to describe it to your doctors and nurses.
If, for example, you are having pain in your hip or back that feels different than a pain crisis, it’s wise to inform your doctor and describe the discomfort. Pain in those areas could be a sign of Avascular Necrosis. Early detection and cautious activity can prevent bigger problems down the road. Learn to understand what your body is trying to communicate to you through your pain.
Admittedly, sometimes it can be difficult to get a doctor to properly understand the pain you are describing. I can’t tell you how many times I’ve had the following conversation when admitted to the ER:
“Are you having chest pains?” The nurse will ask.
“I’m having Sickle Cell pain, which is in my chest, but I’m not having chest pains in the way you mean.”
“So you’re having chest pain?”
“No. I’m having Sickle Cell pain, which happens to be located in my chest at this time,” and round and round we go with that. Typically, they hook me up to an EKG to make certain I’m not having a heart attack. My heart has hurt at times in the past, and that’s a very different feeling pain than Sickle Cell pain. But getting a medical professional to understand that I am able to tell the difference, is sometimes a challenge.
So, know your pain, and do you best to describe it to your doctors and nurses.
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