Friday, December 20, 2013
Merry Christmas
I pray my few faithful raers have a Merry Christmas that is full of joy and void of pain.
Sunday, December 15, 2013
Cold Weather and Sickle Cell
It’s impossible for anyone other than Sickle Cell patients to understand how powerfully temperature, and weather, impacts our life. I cannot number the times when I’ve been entirely pain free, and either walked into a cold room or out into cold weather, and instantly had a wave of needling pain wash over my entire body. [And I’m not talking about the kind of pain that comes from your parents needling you about cleaning your room...I mean the pain of a million needles being jabbed into every square inch of your body.]
Then there have been those times when I froze in an air conditioned room for 30-60 minutes; and that short time of temperature discomfort caused a pain crisis that lasted not hours or days, but weeks. Yes, being cold for thirty minutes can cause physical pain that lasts weeks!
Some people say, “Just cover yourself up with a blanket.” But those people are ignorant of the fact that, though I may be moderately warm underneath a blanket or coat, the cold air surrounding me can still trigger horrendous pain. To ward off a cold triggered pain crisis, not only do I personally have to be warm, but the air around me has to also be warm. Obviously, we can’t always control what the temperature around us is set at. So the best we can do is think ahead about where we are going and try to anticipate what the temperature may be like there.
When I go to the doctor, I always dress warm and take a coat, even if it’s 100ยบ outside. The same is true for the movies, church, and anywhere I go where I cannot control the temperature.
At church, some people loving tease me when they see my with my Sunday blanket during the summer. They might say, “Jon, is the air conditioner making you cold or can you just not leave your blanky at home?” Fortunately my church family know what my health issues are and do not judge. But to some degree, taking care of yourself means not caring what people think.
¶ PARENTS: On behalf of your children, please, please, be both tolerate and understanding of how important the temperature is to your child’s health. Also, help your son or daughter learn what she/he must do to stay warm, and teach them how important it is to do so.
Something that might help offset the cost of running the air or heater is something called, a “Medical Baseline Allowance Application.” This is a form you submit to you electric company which provides you with a discount on your electric bill. It can save you some money on the electric bill and is something every Sickle Cell household should get.
This form has to be filled out both by the individual and by your doctor. It basically states, due to medically issues, the temperature in your home has to be within a certain range to stay. The form may also indicate that you have medical equipment that needs to be running, like an oxygen concentrator. The application form can be found on the Southern California Edison website. I’m fairly certain other electric companies off similar savings plans.
¶ PATIENTS: I encourage to have the disciple to always be prepared. If you’re too hot, it’s much easier to take layers of clothing off than it is put layers of clothing on that you don’t have. I think one of the reasons why I was hospitalized so much as a child and teenager was because it took me a long time to learn simple lessons.
Many of my hospitalizations as a kid were the result of getting too cold or too hot. With age and wisdom, I learned to manage my illness better. As a result, I have only been hospitalized nine times in the past 20 years! The twenty years before that, I was admitted one hundred and seven times. That’s a HUGE difference. I work hard at staying out of the hospital, and it has paid off.
¶ So in closing I say:
• Wear thermal underwear; long sleeved shirts; sweaters; coats; jackets; hats; and gloves. No, you don’t have to wear all of these at the same time; unless you live in the Arctic.
• Try not to feel embarrassed about keeping yourself warm.
• Whatever you do, don’t join the Polar Bear Club (you know, those crazy people who jump in rivers of ice just for the fun of it).
Until next time my friends...may warmth be with you.
Then there have been those times when I froze in an air conditioned room for 30-60 minutes; and that short time of temperature discomfort caused a pain crisis that lasted not hours or days, but weeks. Yes, being cold for thirty minutes can cause physical pain that lasts weeks!
Some people say, “Just cover yourself up with a blanket.” But those people are ignorant of the fact that, though I may be moderately warm underneath a blanket or coat, the cold air surrounding me can still trigger horrendous pain. To ward off a cold triggered pain crisis, not only do I personally have to be warm, but the air around me has to also be warm. Obviously, we can’t always control what the temperature around us is set at. So the best we can do is think ahead about where we are going and try to anticipate what the temperature may be like there.
When I go to the doctor, I always dress warm and take a coat, even if it’s 100ยบ outside. The same is true for the movies, church, and anywhere I go where I cannot control the temperature.
At church, some people loving tease me when they see my with my Sunday blanket during the summer. They might say, “Jon, is the air conditioner making you cold or can you just not leave your blanky at home?” Fortunately my church family know what my health issues are and do not judge. But to some degree, taking care of yourself means not caring what people think.
¶ PARENTS: On behalf of your children, please, please, be both tolerate and understanding of how important the temperature is to your child’s health. Also, help your son or daughter learn what she/he must do to stay warm, and teach them how important it is to do so.
Something that might help offset the cost of running the air or heater is something called, a “Medical Baseline Allowance Application.” This is a form you submit to you electric company which provides you with a discount on your electric bill. It can save you some money on the electric bill and is something every Sickle Cell household should get.
This form has to be filled out both by the individual and by your doctor. It basically states, due to medically issues, the temperature in your home has to be within a certain range to stay. The form may also indicate that you have medical equipment that needs to be running, like an oxygen concentrator. The application form can be found on the Southern California Edison website. I’m fairly certain other electric companies off similar savings plans.
¶ PATIENTS: I encourage to have the disciple to always be prepared. If you’re too hot, it’s much easier to take layers of clothing off than it is put layers of clothing on that you don’t have. I think one of the reasons why I was hospitalized so much as a child and teenager was because it took me a long time to learn simple lessons.
Many of my hospitalizations as a kid were the result of getting too cold or too hot. With age and wisdom, I learned to manage my illness better. As a result, I have only been hospitalized nine times in the past 20 years! The twenty years before that, I was admitted one hundred and seven times. That’s a HUGE difference. I work hard at staying out of the hospital, and it has paid off.
¶ So in closing I say:
• Wear thermal underwear; long sleeved shirts; sweaters; coats; jackets; hats; and gloves. No, you don’t have to wear all of these at the same time; unless you live in the Arctic.
• Try not to feel embarrassed about keeping yourself warm.
• Whatever you do, don’t join the Polar Bear Club (you know, those crazy people who jump in rivers of ice just for the fun of it).
Until next time my friends...may warmth be with you.
Friday, December 6, 2013
Procrit and Sickle Cell
This week I wanted to talk about a medication that has REALLY made a difference in my life. Procrit (aka: Epoetin Alfa or Epogen) is a subcutaneous injection that I give myself three times a week.
I’ve been on Procrit for about five years now. For about a year or two prior to taking Procrit, my hemoglobin level hovered between 5.0 and 5.6. Needless to say, I was experiencing a high number of pain crises and a lot of fatigue. It really restricted my social activities.
Finally my hematologist suggested I try Procrit. Generally it’s given to patients who have cancer or issues with their kidneys Procrit stimulates your bone marrow to make more red blood cells. Obviously, more red blood cells means a higher hemoglobin level.
I don’t exactly recall how long it took, but it seems like within a few weeks my hemoglobin had gone from the five to eight. Obviously, I was physically feeling a whole lot better. I was having fewer crises and my stamina improved. Still today, thanks to Procrit, my hemoglobin ranges from 8.6 to 9.2.
Though Procrit has improved my health, there have been battles with the insurance companies. After a couple months, the insurance didn’t want to pay for it any more. Later I learned they had a good reason for that. A month supply cost around $1,000. Crazy, I know. My insurance said two things about Procrit: 1) That the medication had not raised my hemoglobin enough to keep paying for it; 2) Because no studies existed about how Procrit benefits Sickle Cell Disease, they would not pay for it.
I was beside myself with anger. On paper, the difference between 5.2 and 8.6 doesn’t seem like a lot, but it sure made a difference in how I felt.
To get around the insurance company’s red tape, my hematologist suggested that I go see my nephrologist (my kidney doctor). He hoped that since I do in fact have problems with my kidneys, that the insurance company might be more apt to pay for the prescription if it came from a kidney doctor.
So I played the “Out Whit the Insurance Company” game, and went and saw my kidney doctor. Sure enough, because of my kidney issues, and because my nephrologist wrote the prescription, I didn’t have any additional problems getting Procrit. In truth, my kidneys are doing pretty well—especially when I’m drinking the amount of water I should. The main reason I routinely see my nephrologist is so I can get Procrit paid for.
You might ask, “Since Procrit helps increase a patient’s red blood cell count, why aren’t there any studies done about how it helps Sickle Cell Anemia?” The answer is simple; “I don’t know.” That was five years ago. Hopefully there have been studies done since then.
As I’ve said many times before, “the only thing predictable about Sickle Cell is that it’s unpredictable.” Nearly three years ago, even though I was taking Procrit, my hemoglobin dropped to four. Eventually I had to be admitted and get a blood transfusion. Once I received a transfusion, my hemoglobin stabilized. So, even though Procrit has helped improve my red blood cell count, things are still going to happen.
Clearly, my purpose in writing about this is to help my readers. Ask your doctors about Procrit. Perhaps, in addition to doing all thing right things to take care of your self, Procrit can improve your health as it has mine.
Until next time...
I’ve been on Procrit for about five years now. For about a year or two prior to taking Procrit, my hemoglobin level hovered between 5.0 and 5.6. Needless to say, I was experiencing a high number of pain crises and a lot of fatigue. It really restricted my social activities.
Finally my hematologist suggested I try Procrit. Generally it’s given to patients who have cancer or issues with their kidneys Procrit stimulates your bone marrow to make more red blood cells. Obviously, more red blood cells means a higher hemoglobin level.
I don’t exactly recall how long it took, but it seems like within a few weeks my hemoglobin had gone from the five to eight. Obviously, I was physically feeling a whole lot better. I was having fewer crises and my stamina improved. Still today, thanks to Procrit, my hemoglobin ranges from 8.6 to 9.2.
Though Procrit has improved my health, there have been battles with the insurance companies. After a couple months, the insurance didn’t want to pay for it any more. Later I learned they had a good reason for that. A month supply cost around $1,000. Crazy, I know. My insurance said two things about Procrit: 1) That the medication had not raised my hemoglobin enough to keep paying for it; 2) Because no studies existed about how Procrit benefits Sickle Cell Disease, they would not pay for it.
I was beside myself with anger. On paper, the difference between 5.2 and 8.6 doesn’t seem like a lot, but it sure made a difference in how I felt.
To get around the insurance company’s red tape, my hematologist suggested that I go see my nephrologist (my kidney doctor). He hoped that since I do in fact have problems with my kidneys, that the insurance company might be more apt to pay for the prescription if it came from a kidney doctor.
So I played the “Out Whit the Insurance Company” game, and went and saw my kidney doctor. Sure enough, because of my kidney issues, and because my nephrologist wrote the prescription, I didn’t have any additional problems getting Procrit. In truth, my kidneys are doing pretty well—especially when I’m drinking the amount of water I should. The main reason I routinely see my nephrologist is so I can get Procrit paid for.
You might ask, “Since Procrit helps increase a patient’s red blood cell count, why aren’t there any studies done about how it helps Sickle Cell Anemia?” The answer is simple; “I don’t know.” That was five years ago. Hopefully there have been studies done since then.
As I’ve said many times before, “the only thing predictable about Sickle Cell is that it’s unpredictable.” Nearly three years ago, even though I was taking Procrit, my hemoglobin dropped to four. Eventually I had to be admitted and get a blood transfusion. Once I received a transfusion, my hemoglobin stabilized. So, even though Procrit has helped improve my red blood cell count, things are still going to happen.
Clearly, my purpose in writing about this is to help my readers. Ask your doctors about Procrit. Perhaps, in addition to doing all thing right things to take care of your self, Procrit can improve your health as it has mine.
Until next time...
Saturday, November 23, 2013
Suicide & Sickle Cell - To Parents
With the Lord’s help, I try to choose topics that could be most beneficial to anyone who happens on my humble site. For some reason, for the past two weeks, suicide as it relates to Sickle Cell patients, has been on my mind. Forgive the seriousness of my chosen subject matter, but I feel it needs to be discussed.
I am a person who wholly knows what it’s like to feel hopeless and want more than anything in life for his to end. In Section 10) Depression, Antidepressants and Counseling, I share some of my experiences with depression. Having experienced what I have with depression and suicidal thoughts, I feel I can offer some insights for anyone who may be contemplating taking their life; and for those who are concerned that their loved one may be close to doing so.
This illness causes the afflicted to experience so much. Sometimes we feel like we are going to drown in anger and frustration. With all the missed school; lost social time; absent relationships; and chronic pain...sometimes we feel as though we can’t allow ourselves to get close to others. Other times we feel like people don’t want to get close to us. Sometimes the physical pain seems unending and too intense to endure. At times it’s impossible to imagine how things could ever get better. The things we emotionally and physically cope with cause the waters of our soul to run deep, and much is swimming beneath the surface.
The words we speak are often a reflection of the frustration we feel. Frequently, those frustrated words can be perceived by others as dark. I know I’m guilty of that on occasion. A person may ask, “Is there anything I can do?”
Jokingly I have said, “Do you have a gun?”
Not many people understand or appreciate the darker tinges of my humor that can eek out. Frustrated and tired, it’s easy to say such things. It doesn’t mean we are going to act on them; it doesn’t mean we are suicidal; it doesn’t mean we need a padded cell. It may simply mean we’re tired.
So, if the occasional random expressions of a desire for death are not warning signs, what are?
• Frequently talking about dying or taking their own life;
• Expressing feelings of hopelessness;
• Reckless behavior;
• Withdrawing from others;
• Sleeping too little or too much;
• Extreme mood swings;
• A preoccupation with death.
This is a short list. There are many additional warning signs. By no means am I medical professional. A doctor or psychologist will be able to offer additional and more detailed information than I.
Personally, I experienced each one of those warning signs at some point during my struggles with depression. Though I may have experienced several at a time, I don’t believe I experienced all of them at once. So, what should you do if your child or loved one begins exhibiting a multitude of warning signs?
First, learn to distinguish the difference between an expression of momentary frustration and a true state of depression. If you can’t tell the difference, seek advice from medical professionals. Try to encourage your loved one to talk to someone about what they are feeling.
For me, talking to my parents wouldn’t have made any difference. Don’t misunderstand, I have a WONDERFUL family and incredible parents. Too often, however, children discount parental wisdom or insight. I know I did with many things. What finally allowed me to see that I needed help were several conversations with a trusted friend.
This friend was a leader in my church, but more significantly, he lived with diabetes. To a great extent, he understood what it was that I felt. In time, he helped me see: 1) there was no shame in admitting that I needed help; and 2) embrace the possibility that Sickle Cell could effect my mind just as much as my body (please click here for greater details). My point in sharing this is, sometimes parents aren’t the best source for help (mostly because we kids don't want to listen). Sometimes it’s friends, doctors, psychologists, teachers, or church leaders who have the words that carry more weight.
Suicide in young adults is a problem in our country. 4,600 people from ages 10-24 take their own life each year. 157,000 are annually treated for self-inflicted wounds. Parents and loved ones need to be aware of what is going on in the life of those they love and how those things are emotionally impacting their children.
I write this to parents not to frighten you, but to help you understand what may be taking place in your child's mind. I hid, or at least tried to hide, much of my depression from parents. I didn't want them to worry. Perhaps I was afraid of what they might think.
In the post "Family Openness" I talked about how important it is for families to not be afraid to speak openly about life and death and everything in between. For me, thoughts about death and dying have always been present, even at a very young age. It's important to speak with your child about these things and find out what's going on inside them.
I hope this post provided some useful insight for parents.
I am a person who wholly knows what it’s like to feel hopeless and want more than anything in life for his to end. In Section 10) Depression, Antidepressants and Counseling, I share some of my experiences with depression. Having experienced what I have with depression and suicidal thoughts, I feel I can offer some insights for anyone who may be contemplating taking their life; and for those who are concerned that their loved one may be close to doing so.
This illness causes the afflicted to experience so much. Sometimes we feel like we are going to drown in anger and frustration. With all the missed school; lost social time; absent relationships; and chronic pain...sometimes we feel as though we can’t allow ourselves to get close to others. Other times we feel like people don’t want to get close to us. Sometimes the physical pain seems unending and too intense to endure. At times it’s impossible to imagine how things could ever get better. The things we emotionally and physically cope with cause the waters of our soul to run deep, and much is swimming beneath the surface.
The words we speak are often a reflection of the frustration we feel. Frequently, those frustrated words can be perceived by others as dark. I know I’m guilty of that on occasion. A person may ask, “Is there anything I can do?”
Jokingly I have said, “Do you have a gun?”
Not many people understand or appreciate the darker tinges of my humor that can eek out. Frustrated and tired, it’s easy to say such things. It doesn’t mean we are going to act on them; it doesn’t mean we are suicidal; it doesn’t mean we need a padded cell. It may simply mean we’re tired.
So, if the occasional random expressions of a desire for death are not warning signs, what are?
• Frequently talking about dying or taking their own life;
• Expressing feelings of hopelessness;
• Reckless behavior;
• Withdrawing from others;
• Sleeping too little or too much;
• Extreme mood swings;
• A preoccupation with death.
This is a short list. There are many additional warning signs. By no means am I medical professional. A doctor or psychologist will be able to offer additional and more detailed information than I.
Personally, I experienced each one of those warning signs at some point during my struggles with depression. Though I may have experienced several at a time, I don’t believe I experienced all of them at once. So, what should you do if your child or loved one begins exhibiting a multitude of warning signs?
First, learn to distinguish the difference between an expression of momentary frustration and a true state of depression. If you can’t tell the difference, seek advice from medical professionals. Try to encourage your loved one to talk to someone about what they are feeling.
For me, talking to my parents wouldn’t have made any difference. Don’t misunderstand, I have a WONDERFUL family and incredible parents. Too often, however, children discount parental wisdom or insight. I know I did with many things. What finally allowed me to see that I needed help were several conversations with a trusted friend.
This friend was a leader in my church, but more significantly, he lived with diabetes. To a great extent, he understood what it was that I felt. In time, he helped me see: 1) there was no shame in admitting that I needed help; and 2) embrace the possibility that Sickle Cell could effect my mind just as much as my body (please click here for greater details). My point in sharing this is, sometimes parents aren’t the best source for help (mostly because we kids don't want to listen). Sometimes it’s friends, doctors, psychologists, teachers, or church leaders who have the words that carry more weight.
Suicide in young adults is a problem in our country. 4,600 people from ages 10-24 take their own life each year. 157,000 are annually treated for self-inflicted wounds. Parents and loved ones need to be aware of what is going on in the life of those they love and how those things are emotionally impacting their children.
I write this to parents not to frighten you, but to help you understand what may be taking place in your child's mind. I hid, or at least tried to hide, much of my depression from parents. I didn't want them to worry. Perhaps I was afraid of what they might think.
In the post "Family Openness" I talked about how important it is for families to not be afraid to speak openly about life and death and everything in between. For me, thoughts about death and dying have always been present, even at a very young age. It's important to speak with your child about these things and find out what's going on inside them.
I hope this post provided some useful insight for parents.
Suicide & Sickle Cell -- To Fellow Patients
A few months back, I read on the Sickle Cell Warrior facebook page of
someone with our illness who took their own life. That tragedy has
remained with me. I could have been a Sickle Cell patient who took his
own life. I know what it’s like to feel
helpless, hopeless, and tired of the pain; tired of the
struggle; and emotionally tired in every conceivable way.
Though you may not believe in yourself, God does. He believes you posses the strength to endure the trials of life. And so do I. You posses the courage, faith, will, and strength to survive all that may come your way. Find these things within yourself. I assure you they are there, and much more.
It is natural to become discouraged sometimes. Everybody, healthy or sick, gets depressed. Living with a chronic illness, you and I have a better reason than most to allow feelings of hopelessness to enter our hearts. But just because we can allow something into our hearts, doesn’t mean we should.
Free will is the singular most important gift God has given us. We all have a choice in who we allow ourselves to become and how we choose to live our life. I encourage you to choose to embrace joy. Choose to face your challenges with a smile. Choose to allow God to give you the strength you need to endure the pains of life. Choose to believe your life is worth living. And yes, life is worth living.
When I look at the years I struggled with depression, much of it was of my own doing. It came as a result of the perspective I chose to have in life. Much of my depression, I believe, was also chemical. There is no doubt that antidepressants helped correct whatever brain chemistry that was out of balance. But in addition to the antidepressants, I also changed how I thought about things. I made the choice to be happy. In doing so, I became happy.
Like I said in Section 10, antidepressants are not a cure all that will magically turn that frown upside down. They are an aid. They help. But we must also do our part to make them work. We must have the right mindset, we must eat right, and do our part to care of our mental, physical, emotional and spiritual health (I talk about those four things in Section 09). If we do our part and don’t rely entirely on the medication, we are going to be much better off.
My point isn’t to sell you on antidepressants; that may not be what you need. Only a doctor can determine that. I just know for me, there were times in my life when they helped. Presently I don’t use them.
When I learned that my heart wasn’t strong enough for the double hip replacement surgeries that I need, I was exceptionally depressed. I wondered how life was going to get better. In time, I came out of that fog of depression. My life may not be as it once was, but I do believe things will get better. I hope, whatever your situation is in life, that you carrier that same belief within yourself.
If you are thinking about taking your life, I beg you...please...do not do it! Talk with friends; talk with family; talk with God; talk with your doctor; talk to somebody. Get some help. You are too precious. Though you may not know what it is, you have a work to do in this life. You have touched people around you and there are many more lives that can become better because of you. You can make a difference in this world.
I once thought I had to live my life struggling with suicidal thoughts. I was wrong. If you are experiencing troubling thoughts like I once did, trust me when I say, you don’t have to endure them; there are people who can help. Allow them to help you.
As Sickle Cell patients we endure more pain and trials than most. In spite of those trials, there is joy and be had in life. I truly believe the joys in life can far out weigh the pain, if that’s the choice we make. I know what it’s like to not believe that. I’ve been on both sides of the fence. Joy is a far sweeter aroma than misery.
I encourage you to seek out the authentic joys life has to offer and embrace them fully. Get help. Choose life and be happy.
Though you may not believe in yourself, God does. He believes you posses the strength to endure the trials of life. And so do I. You posses the courage, faith, will, and strength to survive all that may come your way. Find these things within yourself. I assure you they are there, and much more.
It is natural to become discouraged sometimes. Everybody, healthy or sick, gets depressed. Living with a chronic illness, you and I have a better reason than most to allow feelings of hopelessness to enter our hearts. But just because we can allow something into our hearts, doesn’t mean we should.
Free will is the singular most important gift God has given us. We all have a choice in who we allow ourselves to become and how we choose to live our life. I encourage you to choose to embrace joy. Choose to face your challenges with a smile. Choose to allow God to give you the strength you need to endure the pains of life. Choose to believe your life is worth living. And yes, life is worth living.
When I look at the years I struggled with depression, much of it was of my own doing. It came as a result of the perspective I chose to have in life. Much of my depression, I believe, was also chemical. There is no doubt that antidepressants helped correct whatever brain chemistry that was out of balance. But in addition to the antidepressants, I also changed how I thought about things. I made the choice to be happy. In doing so, I became happy.
Like I said in Section 10, antidepressants are not a cure all that will magically turn that frown upside down. They are an aid. They help. But we must also do our part to make them work. We must have the right mindset, we must eat right, and do our part to care of our mental, physical, emotional and spiritual health (I talk about those four things in Section 09). If we do our part and don’t rely entirely on the medication, we are going to be much better off.
My point isn’t to sell you on antidepressants; that may not be what you need. Only a doctor can determine that. I just know for me, there were times in my life when they helped. Presently I don’t use them.
When I learned that my heart wasn’t strong enough for the double hip replacement surgeries that I need, I was exceptionally depressed. I wondered how life was going to get better. In time, I came out of that fog of depression. My life may not be as it once was, but I do believe things will get better. I hope, whatever your situation is in life, that you carrier that same belief within yourself.
If you are thinking about taking your life, I beg you...please...do not do it! Talk with friends; talk with family; talk with God; talk with your doctor; talk to somebody. Get some help. You are too precious. Though you may not know what it is, you have a work to do in this life. You have touched people around you and there are many more lives that can become better because of you. You can make a difference in this world.
I once thought I had to live my life struggling with suicidal thoughts. I was wrong. If you are experiencing troubling thoughts like I once did, trust me when I say, you don’t have to endure them; there are people who can help. Allow them to help you.
As Sickle Cell patients we endure more pain and trials than most. In spite of those trials, there is joy and be had in life. I truly believe the joys in life can far out weigh the pain, if that’s the choice we make. I know what it’s like to not believe that. I’ve been on both sides of the fence. Joy is a far sweeter aroma than misery.
I encourage you to seek out the authentic joys life has to offer and embrace them fully. Get help. Choose life and be happy.
Friday, November 15, 2013
Don't Panic During a Sickle Cell Pain Crisis
Not long ago I was telling a friend that I once had a pain crisis that lasted over a year; it was a constant, mild pain that was present all day every day. She asked me, “Do you ever become panicky and feel as though the pain is never going to end?”
My reply was, “No. I don’t allow myself to become panicky. I learned as a boy that panic only makes the pain worse.”
“But a year of pain,” she exclaimed. “Surly you felt like it would never end?”
“It has to end some time,” I said. “It can’t go on forever.”
¶ In section 06) Controlling Your Pain (see the post titled: Preparation – Be Calm and Breathe Normally) I spoke about how important it is to control your breathing and remain calm during a pain crisis. Like all SC patients who endure long periods of chronic pain, I know how easy it can be to feel: overwhelmed by the pain; a maddening frustration over its prolonged presence; emotionally and physically drained from combating it; and exceptionally irritable.
As patients living with this illness, I don’t think we are always aware of the emotional toll our pain takes on us and often times, those around us. When I was a kid my family found this button-pin that read “leave me alone, I’m having a CRISIS!” I thought it was funny. It wasn’t until I was an adult that I realized that I really was less patient and more irritable during pain crises.
How we physically feel is very closely tied to how we emotionally behave. I mean honestly, who isn’t Mr. or Ms. Crabbypants when their finger is stuck in a door jam? Pain and laughter don’t usually hold hands and go skipping through a field of daisies together.
I think what I’m getting at—and please forgive my rambling—is this:
• Panicking over your pain will only make your pain worse.
• Learn to recognize that you may be a bit crabby when in crisis.
• While a certain level of irritability when in crisis is to be expected, try to use restraint. Just because you are in pain doesn’t mean everybody around you also has to also suffer.
Like so many patients, I know what it’s like to feel overwhelmed from the pain and complications of our illness. But we don’t have the luxury of giving into those feelings. Bottling in that stress will only worsen your health. Talk with friends and family about how your feel; find healthy ways to vent your frustrations (i.e. art, music, writing, etc.); perhaps talk with a counselor; treat yourself to something now and then; redirect that energy into positive things.
Though sometimes it feels as though you no longer posses the strength to endure the trials your health throws at you, I assure you that you do. “With man this is impossible, but with God, all things are possible.”
My reply was, “No. I don’t allow myself to become panicky. I learned as a boy that panic only makes the pain worse.”
“But a year of pain,” she exclaimed. “Surly you felt like it would never end?”
“It has to end some time,” I said. “It can’t go on forever.”
¶ In section 06) Controlling Your Pain (see the post titled: Preparation – Be Calm and Breathe Normally) I spoke about how important it is to control your breathing and remain calm during a pain crisis. Like all SC patients who endure long periods of chronic pain, I know how easy it can be to feel: overwhelmed by the pain; a maddening frustration over its prolonged presence; emotionally and physically drained from combating it; and exceptionally irritable.
As patients living with this illness, I don’t think we are always aware of the emotional toll our pain takes on us and often times, those around us. When I was a kid my family found this button-pin that read “leave me alone, I’m having a CRISIS!” I thought it was funny. It wasn’t until I was an adult that I realized that I really was less patient and more irritable during pain crises.
How we physically feel is very closely tied to how we emotionally behave. I mean honestly, who isn’t Mr. or Ms. Crabbypants when their finger is stuck in a door jam? Pain and laughter don’t usually hold hands and go skipping through a field of daisies together.
I think what I’m getting at—and please forgive my rambling—is this:
• Panicking over your pain will only make your pain worse.
• Learn to recognize that you may be a bit crabby when in crisis.
• While a certain level of irritability when in crisis is to be expected, try to use restraint. Just because you are in pain doesn’t mean everybody around you also has to also suffer.
Like so many patients, I know what it’s like to feel overwhelmed from the pain and complications of our illness. But we don’t have the luxury of giving into those feelings. Bottling in that stress will only worsen your health. Talk with friends and family about how your feel; find healthy ways to vent your frustrations (i.e. art, music, writing, etc.); perhaps talk with a counselor; treat yourself to something now and then; redirect that energy into positive things.
Though sometimes it feels as though you no longer posses the strength to endure the trials your health throws at you, I assure you that you do. “With man this is impossible, but with God, all things are possible.”
Friday, November 8, 2013
Sickle Cell Disease: Faith vs Fear
In the words of Yoda the Wise, “Fear is the path to the Dark Side.” So why am I quoting Yoda? One, he’s my favorite Star Wars character; two, fear is the topic for the week.
On the Sickle Cell Warriors facebook page, I’ve read several posts about how fearful this or that person is about many of the complications that could arise in their future. They live in constant worry that Avascular Necrosis will become an issue; they fear the next pain crisis; or feel anxiety about another hospital visit, to name a few. If you are presently experiencing this, please, do not take my words as a criticism. In no way am I criticizing your feelings. I just want to address this issue.
It’s human nature to fear the unknown, and with Sickle Cell there are many unknowns. I think knowledge is the first tool that can be used to quiet the fear within. If you are worried about needing a hip replacement surgery sometime in your future, the best thing you can do is learn all about Avascular Necrosis, what causes it, and what you can do to prolong its affects. Talk with your doctor, ask if there are procedures or medications that can help improve circulation to the hips and shoulders.
Until I was told I needed both hips replaced, I was fairly ignorant of the fact that hip replacement surgery is common for Sickle Cell patients. There are a great many things I wish I knew five years ago; perhaps it could have made a difference in where I am now in regards to my hips. Perhaps it wouldn’t have made any difference, but I wish I had educated myself better.
Yes, there are certain realities to our illness. But just because Sickle Cell throws this or that complication at me, it doesn’t mean you will experience the same thing; Sickle Cell affects each of us in different ways. Changes in diet, sleep, stress levels, physical activity, and medications each can have a powerful impact upon our health. Sometimes a small change can produce great results.
¶ Living with constant fear in your heart can be emotionally crippling. It will add unnecessary stress to your life and will negatively impact your health. Talking with other Sickle Cell patients can of comfort. If you are like I am and don’t personally know anybody who has your illness, there are other sources available like: facebook pages, support groups, online forums, and other Sickle Cell organizations. Talk with other patients and find out how they cope with the unknowns of their illness. It may empower you. I understand there is a pretty informative blog out there.
¶ I have always been taught that fear and faith cannot exist in the mind and heart at the same time. You either have fear or you have faith; you can’t feel both simultaneously. Having faith (obviously in God) is sometimes a complicated thing. Personally, I’ve never worried too much about what complications could arise in my life; instead I’ve had faith that God would: 1) empower me with the emotional and spiritual strength to endure them; and 2) grant my body the physical strength to either cope with or over come them.
I recall my mother once said, “Jon just takes everything in stride. He really doesn’t let things bother him.” To a large degree this is true. I’ve always been of the mind, “What will be will be, and I’ll face what ever comes if and when it does.” That doesn’t mean I’m reckless in how I live my life, it just means I didn’t worry about things. I learned a long time ago that anxiety, like jumping into a cold swimming pool, only negatively impacts my health.
Beyond the what I’ve already said, and without getting preachy on you about God and faith, I can’t offer any additional advice on how to overcome the fear you my feel about your illness. I only know that God will get you through your next complication just as He has all previous ones. I know this because that’s what He has done for me.
The only control in life we have is self-control. There are a number of ways to manage your health through knowledge and self-control; everything else is in the Master’s hands. Have faith my friends that with God’s empowerment, you possess the strength to endure all that comes your way. Have faith that no matter what comes your way, you will be a better person for it. Have faith that God watches over and loves you. Have faith, not fear.
On the Sickle Cell Warriors facebook page, I’ve read several posts about how fearful this or that person is about many of the complications that could arise in their future. They live in constant worry that Avascular Necrosis will become an issue; they fear the next pain crisis; or feel anxiety about another hospital visit, to name a few. If you are presently experiencing this, please, do not take my words as a criticism. In no way am I criticizing your feelings. I just want to address this issue.
It’s human nature to fear the unknown, and with Sickle Cell there are many unknowns. I think knowledge is the first tool that can be used to quiet the fear within. If you are worried about needing a hip replacement surgery sometime in your future, the best thing you can do is learn all about Avascular Necrosis, what causes it, and what you can do to prolong its affects. Talk with your doctor, ask if there are procedures or medications that can help improve circulation to the hips and shoulders.
Until I was told I needed both hips replaced, I was fairly ignorant of the fact that hip replacement surgery is common for Sickle Cell patients. There are a great many things I wish I knew five years ago; perhaps it could have made a difference in where I am now in regards to my hips. Perhaps it wouldn’t have made any difference, but I wish I had educated myself better.
Yes, there are certain realities to our illness. But just because Sickle Cell throws this or that complication at me, it doesn’t mean you will experience the same thing; Sickle Cell affects each of us in different ways. Changes in diet, sleep, stress levels, physical activity, and medications each can have a powerful impact upon our health. Sometimes a small change can produce great results.
¶ Living with constant fear in your heart can be emotionally crippling. It will add unnecessary stress to your life and will negatively impact your health. Talking with other Sickle Cell patients can of comfort. If you are like I am and don’t personally know anybody who has your illness, there are other sources available like: facebook pages, support groups, online forums, and other Sickle Cell organizations. Talk with other patients and find out how they cope with the unknowns of their illness. It may empower you. I understand there is a pretty informative blog out there.
¶ I have always been taught that fear and faith cannot exist in the mind and heart at the same time. You either have fear or you have faith; you can’t feel both simultaneously. Having faith (obviously in God) is sometimes a complicated thing. Personally, I’ve never worried too much about what complications could arise in my life; instead I’ve had faith that God would: 1) empower me with the emotional and spiritual strength to endure them; and 2) grant my body the physical strength to either cope with or over come them.
I recall my mother once said, “Jon just takes everything in stride. He really doesn’t let things bother him.” To a large degree this is true. I’ve always been of the mind, “What will be will be, and I’ll face what ever comes if and when it does.” That doesn’t mean I’m reckless in how I live my life, it just means I didn’t worry about things. I learned a long time ago that anxiety, like jumping into a cold swimming pool, only negatively impacts my health.
Beyond the what I’ve already said, and without getting preachy on you about God and faith, I can’t offer any additional advice on how to overcome the fear you my feel about your illness. I only know that God will get you through your next complication just as He has all previous ones. I know this because that’s what He has done for me.
The only control in life we have is self-control. There are a number of ways to manage your health through knowledge and self-control; everything else is in the Master’s hands. Have faith my friends that with God’s empowerment, you possess the strength to endure all that comes your way. Have faith that no matter what comes your way, you will be a better person for it. Have faith that God watches over and loves you. Have faith, not fear.
Friday, November 1, 2013
Angry with God About Sickle Cell?
A friend of mine recently asked me, "Don't you ever feel angry at God for all the things you have to endure?" My answer was, "No." Though this friend and I are of the same faith, this amazed her. For me personally, getting angry with God has never made any sense.
Just as we will return to live with God after this life is over, I believe that we all lived with God as His spirit children before we came to live on earth as mortal beings. I also believe, when we lived with Him as spirits, that we each chose to be born on earth; that we understood the challenges we would face while on earth; and we chose to accept those challenges.
I feel these beliefs are the reasons why I have made the choice to never be angry with God. Yes, there have been times when I wondered why this is happening, times when I've felt lost and confused, but never angry at Father. I believe I chose this life and accepted the trials and blessings that came with it; how could I possibly be angry with God for that?
Whether or not a person is of my faith, I know not everyone has this same outlook. It can be an easy temptation to exclaim to the heavens with clinched fists, "Why are You doing this to me?" As hard as it is, we should train ourselves to instead ask, "What is it that You want me to learn from this?" Or, "How can I be a better person from having had this experience?"
One of my favorite Bible stories is found in John 9:1-3. It reads: "And as Jesus passed by, he saw a man which was blind from his birth. And his disciples asked him, saying, Master, who did sin, this man, or his parents, that he was born blind? Jesus answered, Neither hath this man sinned, nor his parents: but that the works of God should be made manifest in him."
There are many reasons I like these verses. One reason is that it can be a source of relief to parents. Sometimes parents feel a terrible guilt over their child's disability. This verse tells me that--unless it was through gross negligence, such as drug or alcohol abuse--a parent’s sins or actions did not cause their child to be born with a disability; as sad as it is, some people believe this. They are idiots; don’t listen to them.
The other reason I like these verses is found in the last verse: "...but that the works of God should be made manifest in him." We can't see God's purpose in all things. But one thing I am certain of, you and I were born on this earth for a reason. Sometimes, quite often in fact, the trials that you and I endure from having Sickle Cell Disease is a source of inspiration to other people.
I don't say this boast, but rather to acknowledge God's purpose. I know for certain that my life has touched others. The things I endure, how I endure it, and the way I've chosen to live my life has been an inspiration to many people. I think this is what the last part of that verse means. Your life can motivate people to do and be better.
I have survived many things that should have killed me and have been healed from many afflictions. The miracles in my life, and yours as well, are a manifestation of God's love and power. Though it may not bring much comfort when we are having a horrid pain crisis, the truth still remains that others see our strength and are made better by it.
Living with Sickle Cell Anemia, you and I will face a great number of trials. These are not punishments from our loving Heavenly Father, but are opportunities for us, and others, to emotionally and spiritually grow closer to Him. Yes, pain will come. Yes, complications will arise. But it's how you and I choose to weather these storms that will define who we are as a son or daughter of God. They will also help inspire others.
Don’t allow the pain in your life to put a wedge between you and God. Instead, allow that pain to be an instrument to build an unbreakable bond with your Creator. It will enrich your life, and the lives of others, beyond what words can convey.
Just as we will return to live with God after this life is over, I believe that we all lived with God as His spirit children before we came to live on earth as mortal beings. I also believe, when we lived with Him as spirits, that we each chose to be born on earth; that we understood the challenges we would face while on earth; and we chose to accept those challenges.
I feel these beliefs are the reasons why I have made the choice to never be angry with God. Yes, there have been times when I wondered why this is happening, times when I've felt lost and confused, but never angry at Father. I believe I chose this life and accepted the trials and blessings that came with it; how could I possibly be angry with God for that?
Whether or not a person is of my faith, I know not everyone has this same outlook. It can be an easy temptation to exclaim to the heavens with clinched fists, "Why are You doing this to me?" As hard as it is, we should train ourselves to instead ask, "What is it that You want me to learn from this?" Or, "How can I be a better person from having had this experience?"
One of my favorite Bible stories is found in John 9:1-3. It reads: "And as Jesus passed by, he saw a man which was blind from his birth. And his disciples asked him, saying, Master, who did sin, this man, or his parents, that he was born blind? Jesus answered, Neither hath this man sinned, nor his parents: but that the works of God should be made manifest in him."
There are many reasons I like these verses. One reason is that it can be a source of relief to parents. Sometimes parents feel a terrible guilt over their child's disability. This verse tells me that--unless it was through gross negligence, such as drug or alcohol abuse--a parent’s sins or actions did not cause their child to be born with a disability; as sad as it is, some people believe this. They are idiots; don’t listen to them.
The other reason I like these verses is found in the last verse: "...but that the works of God should be made manifest in him." We can't see God's purpose in all things. But one thing I am certain of, you and I were born on this earth for a reason. Sometimes, quite often in fact, the trials that you and I endure from having Sickle Cell Disease is a source of inspiration to other people.
I don't say this boast, but rather to acknowledge God's purpose. I know for certain that my life has touched others. The things I endure, how I endure it, and the way I've chosen to live my life has been an inspiration to many people. I think this is what the last part of that verse means. Your life can motivate people to do and be better.
I have survived many things that should have killed me and have been healed from many afflictions. The miracles in my life, and yours as well, are a manifestation of God's love and power. Though it may not bring much comfort when we are having a horrid pain crisis, the truth still remains that others see our strength and are made better by it.
Living with Sickle Cell Anemia, you and I will face a great number of trials. These are not punishments from our loving Heavenly Father, but are opportunities for us, and others, to emotionally and spiritually grow closer to Him. Yes, pain will come. Yes, complications will arise. But it's how you and I choose to weather these storms that will define who we are as a son or daughter of God. They will also help inspire others.
Don’t allow the pain in your life to put a wedge between you and God. Instead, allow that pain to be an instrument to build an unbreakable bond with your Creator. It will enrich your life, and the lives of others, beyond what words can convey.
Friday, October 25, 2013
Sickle Cell Foot Ulcers: A New Round
As I wrote in a recent post, new foot ulcers have formed on my left foot. Initially, three small spots formed. Now I have a total of five wounds. One is on my big toe; I have no idea how that one formed. It’s as though once the skin begins breaking down in one spot, all the skin in the surrounding area becomes compromised.
For the past couple weeks the pain associated with the wounds has been much higher. Keeping my foot elevated as much as possible helps, but waves of pain still strike for reasons that are unknown to me. I’m grateful I have lidocaine available to me. It really makes a difference.
Initially, for a period of about three weeks, I used Manuka honey on my wounds. When I was finally able to see my wound doctor, he instructed me to stop using the honey. To help get the wound growth under control, he told me to do the following for the next two weeks:
1. Take an antibiotic twice a day,
2. Use Silver Sulfadiazine Cream in place of the honey, then resume honey use,
3. Clean and dress the wounds three times a day.
When it comes having these wounds, I am fortunate that I do not have to go to a job every day. I can’t imagine having these wounds and not having the time to care for them the way I do. If not properly cared for, foot ulcers can go from not so bad to nightmarishly bad in a very brief period of time. At times the pain is comparable to that of badly burning yourself; standing on the wounded foot is agonizing; sleep is interrupted due to discomfort; pain medication doesn’t touch the hurt the wounds produce, only lidocaine helps; and shoes are unbearable to wear.
¶ Two years ago when I first began having a serious problem with my wounds, I was buying many of my own bandages myself at the dollar store; and it was costing me a lot of money. When I saw my doctor, the nurse asked if I had bandages and such, I said yes not realizing what they were asking. It wasn’t until I talked with my sister whose a nurse, that I learned that doctors can write prescriptions for wound care products and my insurance will pay for it.
Before I came to this realization I had spent nearly $100 of my own money on wound care products. Once I got a prescription, I received all the things I needed through my insurance; I no longer had to personally buy only the things I could afford. I felt so stupid. I didn’t realize what my nurse was asking me. Thankfully I wised up. Now, the only thing I have to buy myself is the honey, which admittedly isn’t cheap.
¶ To parents who have children who struggle with this most unpleasant complication, please recognize how painful these sores can be. If your child doesn’t recognize the importance, help them see how vital it is to properly take care of their wounds. As soon as one appears, get your son or daughter to the doctor as soon as possibly, preferably one who specializes in wound care.
To Sickle Cell patients: I encourage you to take care of your legs and feet; make the necessary social sacrifices to take care of your wounds; don’t wait to see the doctor; and be patient.
Yesterday I could have gone to see Jay Leno’s garage and to the filming of the Tonight Show, but I didn’t go. It would have been a very long day. Lately, my foot swells if I don’t keep it elevated. When it swells, the skin breaks down faster and my wounds grow larger. I knew if I went and did what I wanted, my wounds would be the worse for it. As much as I wanted to go do those things yesterday, I decided it wasn’t the wisest thing to do.
My point is, know your body, know how your wounds behave; know what makes them worse and what helps them improve; and have the courage to do exactly that.
Stay strong, have faith, and choose to be happy. Until next week my friends.
For the past couple weeks the pain associated with the wounds has been much higher. Keeping my foot elevated as much as possible helps, but waves of pain still strike for reasons that are unknown to me. I’m grateful I have lidocaine available to me. It really makes a difference.
Initially, for a period of about three weeks, I used Manuka honey on my wounds. When I was finally able to see my wound doctor, he instructed me to stop using the honey. To help get the wound growth under control, he told me to do the following for the next two weeks:
1. Take an antibiotic twice a day,
2. Use Silver Sulfadiazine Cream in place of the honey, then resume honey use,
3. Clean and dress the wounds three times a day.
When it comes having these wounds, I am fortunate that I do not have to go to a job every day. I can’t imagine having these wounds and not having the time to care for them the way I do. If not properly cared for, foot ulcers can go from not so bad to nightmarishly bad in a very brief period of time. At times the pain is comparable to that of badly burning yourself; standing on the wounded foot is agonizing; sleep is interrupted due to discomfort; pain medication doesn’t touch the hurt the wounds produce, only lidocaine helps; and shoes are unbearable to wear.
¶ Two years ago when I first began having a serious problem with my wounds, I was buying many of my own bandages myself at the dollar store; and it was costing me a lot of money. When I saw my doctor, the nurse asked if I had bandages and such, I said yes not realizing what they were asking. It wasn’t until I talked with my sister whose a nurse, that I learned that doctors can write prescriptions for wound care products and my insurance will pay for it.
Before I came to this realization I had spent nearly $100 of my own money on wound care products. Once I got a prescription, I received all the things I needed through my insurance; I no longer had to personally buy only the things I could afford. I felt so stupid. I didn’t realize what my nurse was asking me. Thankfully I wised up. Now, the only thing I have to buy myself is the honey, which admittedly isn’t cheap.
¶ To parents who have children who struggle with this most unpleasant complication, please recognize how painful these sores can be. If your child doesn’t recognize the importance, help them see how vital it is to properly take care of their wounds. As soon as one appears, get your son or daughter to the doctor as soon as possibly, preferably one who specializes in wound care.
To Sickle Cell patients: I encourage you to take care of your legs and feet; make the necessary social sacrifices to take care of your wounds; don’t wait to see the doctor; and be patient.
Yesterday I could have gone to see Jay Leno’s garage and to the filming of the Tonight Show, but I didn’t go. It would have been a very long day. Lately, my foot swells if I don’t keep it elevated. When it swells, the skin breaks down faster and my wounds grow larger. I knew if I went and did what I wanted, my wounds would be the worse for it. As much as I wanted to go do those things yesterday, I decided it wasn’t the wisest thing to do.
My point is, know your body, know how your wounds behave; know what makes them worse and what helps them improve; and have the courage to do exactly that.
Stay strong, have faith, and choose to be happy. Until next week my friends.
Saturday, October 19, 2013
My Angry Adolescence Living with Sickle Cell
I recently read a post on the Sickle Cell Warrior's Facebook page from a concerned father. His teenage child with Sickle Cell is prone to angry outbursts. This child is far more temperamental and short fused than his other children were at the same age. He wondered if this was typical of Sickle Cell children.
Looking at my own life, I know I went through several periods when I was very angry. The first angry-phase I recall going through was when I was fourteen. For whatever reason, I took out all my anger and frustrations out on my older sister. At times, I was very cruel with my words; it’s one my biggest regrets in life.
Both my parents and my sister were patient with me. Being admitted to the hospital every month for blood transfusion therapy; being rushed to the ER in the middle of the night on a regular basis; missing weeks of school and fun with friends; the constant threat of doing something to cause agonizing pain; and living with the belief I wouldn’t live to see my eighteenth birthday...all of these things, and a hundred others, contributed to my anger. I eventually grew out of my angry adolescence. Without the spiritual foundation of my faith, that brief angry period would have festered into a lifetime of rage; of this I am entirely certain.
¶ For any teenager reading this who may be battling the angry demon, I encourage you to find an outlet, find a way channel those negative feelings into something else. Writing, art, music, or appropriate athletics. For me, writing in my journal and dancing (tap and jazz) were my outlets. They really helped me cope with all the crap my health slung at me.
I also recommend that you develop your spirituality. People may let you down but your faith never will. Your religious convictions will provide you with a light that will see you through the darkest of hours. Were it not for my belief system I know I wouldn’t be alive today. Darkness would have consumed me and I would have given in to the anger I battled as a teen.
I also suggest that you talk to people about what you’re feeling. When I was a teenager, I kept everything to myself. I didn’t talk to my parents about my feelings; and since I really didn’t have many close friends at that time in my life, I didn’t talk with friends about many things that I probably should have. Sharing your struggles with loved ones or even counselors can be very beneficial. Try not to bottle things up inside.
¶ For parents who are struggling with an angry teenager, my advice is pretty much the same as above. Be patient and understanding of your child’s plight. There is so much going on beneath the surface of your child. I know for me, death was always on my mind, even at a very young age.
Most people go through life believing they will live forever. Coming to terms with one’s own mortality frequently does not occur until well into their adulthood. For many Sickle Cell patients, thoughts about death and dying are foremost on their minds. I know it was for me. Consider your child may have a hard time believing they will see their next birthday, live long enough to get a driver’s license, graduate high school, be married, have children, or a thousand other things in life. Not everyone with Sickle Cell experiences this, but many do.
I think the angry times in my life were fueled by this belief. I was absolutely certain I wouldn’t live to see eighteen let alone forty. In fact, for most of my life, I loathed the idea of living another year. Help your child live with hope. Help them make the choice and hold the belief that they will live a long and happy life. Help your child embrace the good things in life. Guide them towards activities that will:
• Help them feel good about themselves
• Allow them to become excited about something
• Help them discover something they are good at
• Help build their self-confidence
¶ My final commentary about anger for my Sickle Cell readers is, avoid it. I’ve found that anger, like all negative emotions, only creates more complications to my health. I don’t know how many pain crises have been triggered by me becoming angry or upset. Keeping your emotions in check will go a long way at keeping your health in check.
Best wishes my friends.
Looking at my own life, I know I went through several periods when I was very angry. The first angry-phase I recall going through was when I was fourteen. For whatever reason, I took out all my anger and frustrations out on my older sister. At times, I was very cruel with my words; it’s one my biggest regrets in life.
Both my parents and my sister were patient with me. Being admitted to the hospital every month for blood transfusion therapy; being rushed to the ER in the middle of the night on a regular basis; missing weeks of school and fun with friends; the constant threat of doing something to cause agonizing pain; and living with the belief I wouldn’t live to see my eighteenth birthday...all of these things, and a hundred others, contributed to my anger. I eventually grew out of my angry adolescence. Without the spiritual foundation of my faith, that brief angry period would have festered into a lifetime of rage; of this I am entirely certain.
¶ For any teenager reading this who may be battling the angry demon, I encourage you to find an outlet, find a way channel those negative feelings into something else. Writing, art, music, or appropriate athletics. For me, writing in my journal and dancing (tap and jazz) were my outlets. They really helped me cope with all the crap my health slung at me.
I also recommend that you develop your spirituality. People may let you down but your faith never will. Your religious convictions will provide you with a light that will see you through the darkest of hours. Were it not for my belief system I know I wouldn’t be alive today. Darkness would have consumed me and I would have given in to the anger I battled as a teen.
I also suggest that you talk to people about what you’re feeling. When I was a teenager, I kept everything to myself. I didn’t talk to my parents about my feelings; and since I really didn’t have many close friends at that time in my life, I didn’t talk with friends about many things that I probably should have. Sharing your struggles with loved ones or even counselors can be very beneficial. Try not to bottle things up inside.
¶ For parents who are struggling with an angry teenager, my advice is pretty much the same as above. Be patient and understanding of your child’s plight. There is so much going on beneath the surface of your child. I know for me, death was always on my mind, even at a very young age.
Most people go through life believing they will live forever. Coming to terms with one’s own mortality frequently does not occur until well into their adulthood. For many Sickle Cell patients, thoughts about death and dying are foremost on their minds. I know it was for me. Consider your child may have a hard time believing they will see their next birthday, live long enough to get a driver’s license, graduate high school, be married, have children, or a thousand other things in life. Not everyone with Sickle Cell experiences this, but many do.
I think the angry times in my life were fueled by this belief. I was absolutely certain I wouldn’t live to see eighteen let alone forty. In fact, for most of my life, I loathed the idea of living another year. Help your child live with hope. Help them make the choice and hold the belief that they will live a long and happy life. Help your child embrace the good things in life. Guide them towards activities that will:
• Help them feel good about themselves
• Allow them to become excited about something
• Help them discover something they are good at
• Help build their self-confidence
¶ My final commentary about anger for my Sickle Cell readers is, avoid it. I’ve found that anger, like all negative emotions, only creates more complications to my health. I don’t know how many pain crises have been triggered by me becoming angry or upset. Keeping your emotions in check will go a long way at keeping your health in check.
Best wishes my friends.
Thursday, October 10, 2013
Sickle Cell Foot Ulcer: Strikes Back
Well, it was nice while it lasted. My previous two-year bought with foot ulcers concluded joyfully in June of this year. Sadly, however, October brought with it a new series of ulcers. I’m not entirely sure what I did to trigger this wound.
About three weeks ago, the heel of my left foot became swollen. I think I may have hit it with the front wheel of my wheelchair, but I don’t know for sure that’s what caused it. An ultrasound ruled out a blood clot, so it’s not that, thankfully. But as I feared, the swelling caused my skin to break down in three places on my foot, and they evolved into three foot-ulcers. (That’s three separate ulcers; not ulcers three feet long. That would truly be horrific.)
A week’s worth of antibiotics has prevented infection but not the development of the wounds. While the wounds were still very small, I began treating them with Manuka Honey. I’m praying the honey will work as well has it did on previous wounds and cut down on healing time. But so far, they are still getting larger, as is typical.
I try not to allow myself to get depressed about the onset of these new ulcers. I know there are people out there who have dealt with the same ulcer for more than fifteen years. Others have lost limbs due to them. So I really have no cause to complain.
Overall, I think that’s the message of this post. 1) Remember, somebody out there has it far worse than you do. 2) Positivity of thought makes all the difference when coping with your newest trial. 3) Know what works with your wound and/or health care and do it sooner rather than later.
Be safe my faithful readers. Take care of yourselves and have faith.
About three weeks ago, the heel of my left foot became swollen. I think I may have hit it with the front wheel of my wheelchair, but I don’t know for sure that’s what caused it. An ultrasound ruled out a blood clot, so it’s not that, thankfully. But as I feared, the swelling caused my skin to break down in three places on my foot, and they evolved into three foot-ulcers. (That’s three separate ulcers; not ulcers three feet long. That would truly be horrific.)
A week’s worth of antibiotics has prevented infection but not the development of the wounds. While the wounds were still very small, I began treating them with Manuka Honey. I’m praying the honey will work as well has it did on previous wounds and cut down on healing time. But so far, they are still getting larger, as is typical.
I try not to allow myself to get depressed about the onset of these new ulcers. I know there are people out there who have dealt with the same ulcer for more than fifteen years. Others have lost limbs due to them. So I really have no cause to complain.
Overall, I think that’s the message of this post. 1) Remember, somebody out there has it far worse than you do. 2) Positivity of thought makes all the difference when coping with your newest trial. 3) Know what works with your wound and/or health care and do it sooner rather than later.
Be safe my faithful readers. Take care of yourselves and have faith.
Sunday, October 6, 2013
Dogs Bring Comfort Living with Sickle Cell
I thought I’d write about something that is light and fluffy as a puppy; dogs. In my mind, one of the most important things a child can have in their life (second only to good parents) is having a dog as a pet. Some parents buy a dog hoping it will help teach their child responsibility. Though this is one of the many natural byproducts of owning a dog, it should not be the primary purpose for getting one.
Numerous studies have shown that people who own dogs:
• Have higher self-esteem;
• Experience less loneliness and depression;
• Have lower blood pressure and reduced stress.
Owning a dog can also:
• Lift a person’s spirits and improve their mood;
• Improve physical activity by taking the dog for walks or simply playing with it in the yard;
• Reduce the number of minor health problems thus reducing the number of doctor’s appointments;
• Help a person adjust to having a serious illness and/or the loss of a loved one;
• Help a person feel less anxious and more safe;
• Help create a sense of well-being within the owner’s life.
I didn’t really have too many complications from Sickle Cell until about the age nine. At that age I was hospitalized with pneumonia. Soon after that I was readmitted with a priapism. Soon after that I suffered a massive stroke that put me in a medically induced coma for twenty-days. Having experienced so much in such a short period of time, my parents saw me giving up on life. They hoped a puppy would give me something to live for.
I remember the day I came home from the hospital after my stroke. I had been hospitalized for over a month. Though I didn’t suffer any physical complications from the stroke, I was very weak and couldn’t walk for almost three weeks.
The day I came home, my parents said they were “going to the store.” I was annoyed. It was my first day home in a month and my parents were leaving to go to the store? I thought, ‘Why couldn’t my sister do that?’ When my parents returned, I was laying on the couch. My dad inched his way through the door being very obvious that he was trying to hide something inside his jacket. I could tell it was something for me but I didn’t know what.
“What do you have?” I exclaimed wide-eyed and eagerly.
“I don’t have anything,” my dad said while keeping the mystery covered with his coat.
“What is it? What is it? Let me see!” Finally my dad opened up his coat to reveal an adorable little puppy. I wanted to jump up off the couch and snatch it out of my dad’s arms, but I was so weak that I couldn’t.
Lassie, as I named her, was a Sheltie. She had brown and white hair with a white streak down the length of her nose. Lassie did exactly what my parents hoped she would do; she gave me something to live for. My parents credit that dog with saving my life. For all sixteen years of her life, Lassie slept in my room every night.
Before I turned ten years old, my family moved to a very rural area. I spent many a day going exploring with Lassie. Her favorite game was catch; she loved to catch balls in her mouth and would leap feet off the ground to do so. Though my family had other dogs before Lassie, she was the first dog that was mine and mine alone. For sixteen years she was my best friend and a faithful companion.
Dogs are unique from all other animals on Earth. They are the only one of God’s creatures that love unconditionally. We humans put conditions on our love. Sad as it is, the love of our friends, brothers, sisters, and even our parents is conditional. But a dog...they will love you no matter what. If for no other reason, a child needs to have a dog so they can learn and experience unconditional love.
Whether you hurt them intentionally or unintentionally, a dog will instantly forgive you. You can be in the happiest or foulest of moods and a dog will still want to be by your side. Whether you’re gone for five minutes or five days, your dog will be excited to see you and warmly welcome you home. If you are in physical agony or mental anguish, a dog will do all it can to comfort you. No dog personified all these things more than my dog Q-Tip.
We rescued Q from the pound in 2001; he passed away on February 5, 2013. Q-Tip was a Bichon--they look like toy poodles--and as you can guess from the name, was all white. Q-Tip was the most unique dog I have ever owned.
Originally Q-Tip belonged to my parents, but he became mine when my wife and I broke up February of 2002. For the eleven years I was privileged to have him as a companion, Q saw me through: a heart breaking divorce; a horrendous bought with depression; and more trials of life than I can recall. He was the most intelligent and compassionate dog I’ve ever known.
He was highly sensitive to the emotional needs of not only me, but anyone who came into my home and freely gave his tender love to all. He knew what I emotionally needed, when I needed it, and always gave me precisely that. There were times when I looked at his character and thought, “I pray I’ve half as devoted to Christ as Q-tip is to me.”
I believe my parents when they say Lassie saved my life. And I know without a doubt that Q-Tip blessed my life abundantly. I think every child needs a dog. Children with chronic or terminal illnesses especially need them. I love all of God’s creations; each are here for a purpose and can teach us something. But dogs, there’s something special about them. They alone are equipped to provide us with many things human beings cannot.
¶ Below is a picture of me and Q-Tip
Numerous studies have shown that people who own dogs:
• Have higher self-esteem;
• Experience less loneliness and depression;
• Have lower blood pressure and reduced stress.
Owning a dog can also:
• Lift a person’s spirits and improve their mood;
• Improve physical activity by taking the dog for walks or simply playing with it in the yard;
• Reduce the number of minor health problems thus reducing the number of doctor’s appointments;
• Help a person adjust to having a serious illness and/or the loss of a loved one;
• Help a person feel less anxious and more safe;
• Help create a sense of well-being within the owner’s life.
I didn’t really have too many complications from Sickle Cell until about the age nine. At that age I was hospitalized with pneumonia. Soon after that I was readmitted with a priapism. Soon after that I suffered a massive stroke that put me in a medically induced coma for twenty-days. Having experienced so much in such a short period of time, my parents saw me giving up on life. They hoped a puppy would give me something to live for.
I remember the day I came home from the hospital after my stroke. I had been hospitalized for over a month. Though I didn’t suffer any physical complications from the stroke, I was very weak and couldn’t walk for almost three weeks.
The day I came home, my parents said they were “going to the store.” I was annoyed. It was my first day home in a month and my parents were leaving to go to the store? I thought, ‘Why couldn’t my sister do that?’ When my parents returned, I was laying on the couch. My dad inched his way through the door being very obvious that he was trying to hide something inside his jacket. I could tell it was something for me but I didn’t know what.
“What do you have?” I exclaimed wide-eyed and eagerly.
“I don’t have anything,” my dad said while keeping the mystery covered with his coat.
“What is it? What is it? Let me see!” Finally my dad opened up his coat to reveal an adorable little puppy. I wanted to jump up off the couch and snatch it out of my dad’s arms, but I was so weak that I couldn’t.
Lassie, as I named her, was a Sheltie. She had brown and white hair with a white streak down the length of her nose. Lassie did exactly what my parents hoped she would do; she gave me something to live for. My parents credit that dog with saving my life. For all sixteen years of her life, Lassie slept in my room every night.
Before I turned ten years old, my family moved to a very rural area. I spent many a day going exploring with Lassie. Her favorite game was catch; she loved to catch balls in her mouth and would leap feet off the ground to do so. Though my family had other dogs before Lassie, she was the first dog that was mine and mine alone. For sixteen years she was my best friend and a faithful companion.
Dogs are unique from all other animals on Earth. They are the only one of God’s creatures that love unconditionally. We humans put conditions on our love. Sad as it is, the love of our friends, brothers, sisters, and even our parents is conditional. But a dog...they will love you no matter what. If for no other reason, a child needs to have a dog so they can learn and experience unconditional love.
Whether you hurt them intentionally or unintentionally, a dog will instantly forgive you. You can be in the happiest or foulest of moods and a dog will still want to be by your side. Whether you’re gone for five minutes or five days, your dog will be excited to see you and warmly welcome you home. If you are in physical agony or mental anguish, a dog will do all it can to comfort you. No dog personified all these things more than my dog Q-Tip.
We rescued Q from the pound in 2001; he passed away on February 5, 2013. Q-Tip was a Bichon--they look like toy poodles--and as you can guess from the name, was all white. Q-Tip was the most unique dog I have ever owned.
Originally Q-Tip belonged to my parents, but he became mine when my wife and I broke up February of 2002. For the eleven years I was privileged to have him as a companion, Q saw me through: a heart breaking divorce; a horrendous bought with depression; and more trials of life than I can recall. He was the most intelligent and compassionate dog I’ve ever known.
He was highly sensitive to the emotional needs of not only me, but anyone who came into my home and freely gave his tender love to all. He knew what I emotionally needed, when I needed it, and always gave me precisely that. There were times when I looked at his character and thought, “I pray I’ve half as devoted to Christ as Q-tip is to me.”
I believe my parents when they say Lassie saved my life. And I know without a doubt that Q-Tip blessed my life abundantly. I think every child needs a dog. Children with chronic or terminal illnesses especially need them. I love all of God’s creations; each are here for a purpose and can teach us something. But dogs, there’s something special about them. They alone are equipped to provide us with many things human beings cannot.
¶ Below is a picture of me and Q-Tip
Friday, September 27, 2013
SCD & Emotional Barriers #6: Breaking them Down
It kind of goes without saying...living with Sickle Cell requires that you have an awesome support group. Everybody needs somebody, whether it’s:
• Friends
• Family
• Other Sickle Cell Patients
• Medical/Mental Health Professionals
• Fellow Church Goers
Everybody’s life experience is different, which causes each of us to emotionally come to our own unique place in life. Some people feel as though they neither need nor want anybody to help see them through the tribulations of their illness. I personally feel that is both sad and emotionally/spiritually unhealthy to be that way, but I understand why some people isolate themselves. In some ways it is easier being alone; and in other ways it’s not. We social creatures by nature and are naturally drawn to other human beings; we all want to love and be loved.
In the Thoughts / Experiences section, I wrote many posts about the emotional barriers or walls that Sickle Cell Disease can cause us to build around ourselves. Two months ago I posted “SCD & Emotional Barriers #1: Intro.” Since then, I have made a real effort at opening up with people and not being as guarded with my feelings. I’ve invited more people into my home; I try to reach out to people who I see or feel may need it; I’m being more honest with people when they sincerely ask how I’m doing; and I’m allowing, or at least trying, to let people get closer to me.
Since I made the choice to chip away at the barrier I’ve build around myself, I’ve had my emotions trampled to a thousand pieces; I’m actually writing this post huddled up in the corner in the fetal position. I’m totally joking. The truth is I’m happier than I have been in a couple years. The past two and a half years, I’ve been barraged with a steady stream of medical problems; it’s been the hardest two years of my life. Thankfully I’ve made some changes that have had some powerful positive emotion benefits.
I’ve changed some things in my diet (see Green Salads and Sickle Cell). I’ve changed some things in my mindset, like letting people get to the other side of my emotional wall. Though I’m still adjusting to the new issues in my life, I’m emotionally in a good place. I didn’t get there alone.
My friends Stan and Shannon, with whom I have dinner with nearly every Sunday after church; my friend Mike, whom I’m teaching how to cook; my friend Daniel who is so happy to help me with anything and everything; my friend Leisel, who I can talk to about anything; and others . . . they, my family and my relationship with God, are my support group. By opening up a bit more than I previously had, I’m getting through this challenge called life.
For parents with children with Sickle Cell, your child’s doctor may be able to help connect you and your child with your local Sickle Cell Organization through which there are: support groups, summer, camps, and other various activities. Allow and encourage your child to invite friends into your home. Encourage them to be social and try new things. My mom put me in dance at the age of twelve. For about seven years I took tap and jazz; and it was the best thing for me. I wouldn’t be who I am without dance.
For youth or adults living with Sickle Cell, my suggestion for the week is try to open your heart a bit more than you have. Be more honest about how you are feeling with those who love you. Share more of your life and your self. Try to make an emotional connection with someone; or if you have a connection, try to deepen it. You may find, as I have found, a bit more joy in your life.
• Friends
• Family
• Other Sickle Cell Patients
• Medical/Mental Health Professionals
• Fellow Church Goers
Everybody’s life experience is different, which causes each of us to emotionally come to our own unique place in life. Some people feel as though they neither need nor want anybody to help see them through the tribulations of their illness. I personally feel that is both sad and emotionally/spiritually unhealthy to be that way, but I understand why some people isolate themselves. In some ways it is easier being alone; and in other ways it’s not. We social creatures by nature and are naturally drawn to other human beings; we all want to love and be loved.
In the Thoughts / Experiences section, I wrote many posts about the emotional barriers or walls that Sickle Cell Disease can cause us to build around ourselves. Two months ago I posted “SCD & Emotional Barriers #1: Intro.” Since then, I have made a real effort at opening up with people and not being as guarded with my feelings. I’ve invited more people into my home; I try to reach out to people who I see or feel may need it; I’m being more honest with people when they sincerely ask how I’m doing; and I’m allowing, or at least trying, to let people get closer to me.
Since I made the choice to chip away at the barrier I’ve build around myself, I’ve had my emotions trampled to a thousand pieces; I’m actually writing this post huddled up in the corner in the fetal position. I’m totally joking. The truth is I’m happier than I have been in a couple years. The past two and a half years, I’ve been barraged with a steady stream of medical problems; it’s been the hardest two years of my life. Thankfully I’ve made some changes that have had some powerful positive emotion benefits.
I’ve changed some things in my diet (see Green Salads and Sickle Cell). I’ve changed some things in my mindset, like letting people get to the other side of my emotional wall. Though I’m still adjusting to the new issues in my life, I’m emotionally in a good place. I didn’t get there alone.
My friends Stan and Shannon, with whom I have dinner with nearly every Sunday after church; my friend Mike, whom I’m teaching how to cook; my friend Daniel who is so happy to help me with anything and everything; my friend Leisel, who I can talk to about anything; and others . . . they, my family and my relationship with God, are my support group. By opening up a bit more than I previously had, I’m getting through this challenge called life.
For parents with children with Sickle Cell, your child’s doctor may be able to help connect you and your child with your local Sickle Cell Organization through which there are: support groups, summer, camps, and other various activities. Allow and encourage your child to invite friends into your home. Encourage them to be social and try new things. My mom put me in dance at the age of twelve. For about seven years I took tap and jazz; and it was the best thing for me. I wouldn’t be who I am without dance.
For youth or adults living with Sickle Cell, my suggestion for the week is try to open your heart a bit more than you have. Be more honest about how you are feeling with those who love you. Share more of your life and your self. Try to make an emotional connection with someone; or if you have a connection, try to deepen it. You may find, as I have found, a bit more joy in your life.
Saturday, September 21, 2013
Sleepless in Sickle Cell
The pain crisis I had been experiencing for over a month finally subsided. The past several days I haven't had any Sickle Cell pain. Until today. It's amazing how sleep, or the lack there of, impacts our illness.
I think I was in my teens or early twenties. I went to go see my Sickle Cell doctor because I was tired all the time. He asked how much sleep I was getting. I told him eight hours every night. He said, "Then get nine or ten."
"Ten hours!" I exclaimed. "Eight hours is a lot of sleep."
"Jon, you have a serious illness. If your body needs nine or ten hours sleep to regenerate, then that's what you need to give it."
He was right. Once I started giving my body the nine to ten hours sleep it needed, the tiredness I experienced went away. Still today, ten or even eleven hours is what I need to function; call me Sleeping Black Beauty. When I neglect to allow myself the necessary sleep, a pain crisis will begin within one or two days.
The problem I've been having lately is this. With both of my hips in the state they are in, I cannot sleep on my sides; I can only sleep on my back. I've always been a side sleeper. Because I can only sleep on my back, my back gets sore from laying in the same position. In addition, my hips begin to ache; so mid-way through the night, I have to put a pillow under my knees to somewhat change position.
There's also another problem. When I had my foot ulcers, one was on the heel of my left foot which I believe caused some nerve damage. When the heel of my foot rests on my bed or anything, it doesn't take long before it causes stabbing pain in that area. So I have to sleep with a pillow under that foot so it doesn't touch the bed. Between that, my hips and my back, I struggle to get uninterupted sleep.
The past two nights have been very sleepless for all the reasons stated above. As a result, my pain crisis returned today and I feel pretty crumy. This is by no means something new. My health and how I feel is tightly tied to the amount of sleep I get. This is true for all people, but when you have Sickle Cell--like a teenage drama queen--things are exaggerated.
To parents. Please be sensitive to this. Your child needs a lot of sleep. Like drinking as much water as possible, sleep is a vital ingredient to keeping your child healthy as possible. It's not a magic fix of course. Pain crises will still occur, sometimes for no reason at all. But ensuring your child gets enough sleep sure goes a long way to keeping them at bay.
To teens. I would encourage you to learn to discipline yourself. Know how much sleep you need and train yourself to get. When you know you need to go to bed, go to bed. I remember what it was like being a teenager. There were many nights when I stayed up far to long than I should have, and I always paid the price for it in the following days. Having fun is important, but so is staying healthy. Sometimes a little fun is worth whatever comes; sometimes it's not. Learn when to make the proper choice.
Sickle Cell is a difficult challenge to live with, but you can still live, love and enjoy life. Please do just that, enjoy life.
I think I was in my teens or early twenties. I went to go see my Sickle Cell doctor because I was tired all the time. He asked how much sleep I was getting. I told him eight hours every night. He said, "Then get nine or ten."
"Ten hours!" I exclaimed. "Eight hours is a lot of sleep."
"Jon, you have a serious illness. If your body needs nine or ten hours sleep to regenerate, then that's what you need to give it."
He was right. Once I started giving my body the nine to ten hours sleep it needed, the tiredness I experienced went away. Still today, ten or even eleven hours is what I need to function; call me Sleeping Black Beauty. When I neglect to allow myself the necessary sleep, a pain crisis will begin within one or two days.
The problem I've been having lately is this. With both of my hips in the state they are in, I cannot sleep on my sides; I can only sleep on my back. I've always been a side sleeper. Because I can only sleep on my back, my back gets sore from laying in the same position. In addition, my hips begin to ache; so mid-way through the night, I have to put a pillow under my knees to somewhat change position.
There's also another problem. When I had my foot ulcers, one was on the heel of my left foot which I believe caused some nerve damage. When the heel of my foot rests on my bed or anything, it doesn't take long before it causes stabbing pain in that area. So I have to sleep with a pillow under that foot so it doesn't touch the bed. Between that, my hips and my back, I struggle to get uninterupted sleep.
The past two nights have been very sleepless for all the reasons stated above. As a result, my pain crisis returned today and I feel pretty crumy. This is by no means something new. My health and how I feel is tightly tied to the amount of sleep I get. This is true for all people, but when you have Sickle Cell--like a teenage drama queen--things are exaggerated.
To parents. Please be sensitive to this. Your child needs a lot of sleep. Like drinking as much water as possible, sleep is a vital ingredient to keeping your child healthy as possible. It's not a magic fix of course. Pain crises will still occur, sometimes for no reason at all. But ensuring your child gets enough sleep sure goes a long way to keeping them at bay.
To teens. I would encourage you to learn to discipline yourself. Know how much sleep you need and train yourself to get. When you know you need to go to bed, go to bed. I remember what it was like being a teenager. There were many nights when I stayed up far to long than I should have, and I always paid the price for it in the following days. Having fun is important, but so is staying healthy. Sometimes a little fun is worth whatever comes; sometimes it's not. Learn when to make the proper choice.
Sickle Cell is a difficult challenge to live with, but you can still live, love and enjoy life. Please do just that, enjoy life.
Friday, September 13, 2013
Bed-Wetting and Sickle Cell
In the list of complications I named in Section 01) Know Your Illness, I failed to address one issue that is common among Sickle Cell patients, that being, bed-wetting. The link to the website below has good information about the issue.
• Bed-wetting, Information about Bed-wetting
For a child living with this, it can be a stressful and embarrassing issue. You don’t have to have Sickle Cell Anemia or some other health issue to be a bed-wetter. I have three family members, all of whom were healthy, who wet the bed as children. I was twelve or thirteen when I stopped wetting the bed. I remember just waking up one day having not wet the bed, and I never did it again. It was an issue that resolved itself in time.
I’m the only one in the family with Sickle Cell. In spite of this, my mother knew what it was like to be a bed-wetter. She had the issue until age six and her sister had the issue until age twelve. My aunt dreaded spending the night at her grandmother’s house because her grandmother made a big issue out of it and made my aunt feel bad about being twelve years old and wetting the bed.
Because my mom had this childhood experience, she knew that wasn’t the right approach. Wetting the bed isn’t something a child can control, so putting pressure on them to stop, and making them feel bad about it, is the wrong way to handle the problem.
Growing up, I lived in a rural area, so I only had one friend whose house I spent the night at. I remember my mom talking with his mom about my problem. I also remember that I did wet the bed at his house. Jeremy was a true friend. He never gave me a hard time about it.
If I went on campouts, my dad always went with me to make sure I didn’t get too cold. I usually wet my sleeping bag, but my dad was careful to keep it from the other boys so I wouldn’t get teased.
I know some parents try to limit water intake before bedtime. With Sickle Cell children, that is an approach I wouldn’t recommend. Water and hydration are vital to our health. Training the child to get up in the middle of the night to use the restroom may be a wiser approach, though it was something my parents didn’t do with me.
My parents never put any pressure on me to stop wetting the bed or made me feel bad about doing so. They knew it was out of my control and it would resolve itself in time; which it did.
If any young person is reading this, I would say to you, “Don’t worry. One day you will wake up, be dry and never wet the bed again. You aren’t alone. Other children have this same problem. It doesn’t matter if they have Sickle Cell or if they are healthy, other children have the same problem. You WILL grow out of wetting the bed. I promise.”
• Bed-wetting, Information about Bed-wetting
For a child living with this, it can be a stressful and embarrassing issue. You don’t have to have Sickle Cell Anemia or some other health issue to be a bed-wetter. I have three family members, all of whom were healthy, who wet the bed as children. I was twelve or thirteen when I stopped wetting the bed. I remember just waking up one day having not wet the bed, and I never did it again. It was an issue that resolved itself in time.
I’m the only one in the family with Sickle Cell. In spite of this, my mother knew what it was like to be a bed-wetter. She had the issue until age six and her sister had the issue until age twelve. My aunt dreaded spending the night at her grandmother’s house because her grandmother made a big issue out of it and made my aunt feel bad about being twelve years old and wetting the bed.
Because my mom had this childhood experience, she knew that wasn’t the right approach. Wetting the bed isn’t something a child can control, so putting pressure on them to stop, and making them feel bad about it, is the wrong way to handle the problem.
Growing up, I lived in a rural area, so I only had one friend whose house I spent the night at. I remember my mom talking with his mom about my problem. I also remember that I did wet the bed at his house. Jeremy was a true friend. He never gave me a hard time about it.
If I went on campouts, my dad always went with me to make sure I didn’t get too cold. I usually wet my sleeping bag, but my dad was careful to keep it from the other boys so I wouldn’t get teased.
I know some parents try to limit water intake before bedtime. With Sickle Cell children, that is an approach I wouldn’t recommend. Water and hydration are vital to our health. Training the child to get up in the middle of the night to use the restroom may be a wiser approach, though it was something my parents didn’t do with me.
My parents never put any pressure on me to stop wetting the bed or made me feel bad about doing so. They knew it was out of my control and it would resolve itself in time; which it did.
If any young person is reading this, I would say to you, “Don’t worry. One day you will wake up, be dry and never wet the bed again. You aren’t alone. Other children have this same problem. It doesn’t matter if they have Sickle Cell or if they are healthy, other children have the same problem. You WILL grow out of wetting the bed. I promise.”
Saturday, September 7, 2013
Coping with a Sickle Cell Pain Crisis
I thought I would talk more about pain crises again. On the facebook page Sickle Cell Warriors, I read two posts from two separate individuals who were/are having a severe pain crisis; the thunder, lightening, monsoon kind of pain crisis. One person asked what to do when your pain is 10 and the pain medication only drops it down to a 7.
Thankfully I don’t have the monsoon kind of pain crises too often. But when I do, they can last days or weeks. Usually I can control the pain myself and don’t have to go to the hospital. Morphine and methadone are the pain medications I use to control my back and hip pain. When I have a pain crisis, those prescriptions only dull the pain; quite often, they do little to nothing to help with a bad crisis and the only thing I can do is endure it. When I’m having a monsoon-level pain crisis and the pain medication stops providing any relief, sometimes the best thing for me to do is stop taking pain medication. Usually the pain is far less intense within twenty-four hours. Usually.
About two years ago, my hemoglobin dropped from eight to four. I’ve had so many pain blood transfusions that it’s become dangerous for me to have them. Blood transfusions are an absolute last resort with me. Instead, my doctor first tries to raise my hemoglobin with a prescription steroid called Prednisone. Though I had been given Prednisone before, my last experience soured me about ever trying it again.
It was suppose to help raise my red blood cell count, but the side affects were terrible. I was on edge, irritable, it kept me awake at night, and worst of all it caused horrific pain. On top of the pain crisis I was already having from a low hemoglobin count, the steroid caused my muscles to ache something fierce. The slightest amount of pressure from another person’s touch sent me into orbit. On a scale of one to ten, the pain I experienced for three months was a twelve. Like chick-flicks, the pain medication did nothing for me. It took all of my mental focus to cope with and manage the pain. By the end of the three months I was mentally exhausted.
The thing about Prednisone is, it takes two or more weeks for it to leave your system. Once my doctor told me to stop taking it, I still had to endure the pain it caused for another two or three weeks. All the pain was for nothing. Though it raised my blood count a little bit, I had to be transfused anyway two months later. Like I said, I had been given Prednisone in previous years, but it never caused the severe pain I experience the last time I took it. Needless to say, I have no desire to repeat that experience.
My purpose in sharing this with you isn’t just to ramble on mindlessly—which admittedly is a little problem of mine—but to show how important it is have a toolbox full of pain coping strategies. I’ve shared nearly all of mine in Sections 06) Controlling Your Pain and More on Meditation. Whether it’s: a monsoon-level pain crisis like when I was on Prednisone; a light mist-level pain crisis like I’ve had for the past month; or just my everyday back and hip pain, I use some form of meditation to manage my daily pain.
I was curious to know if other Sickle Cell patients use meditation to help manage their pain. Based on the response I received on the Sickle Cell Warriors facebook page, I don’t think many people do. In fact, several people scoffed at the idea of meditating while having a pain crisis.
Sometimes people have funny conceptions about what meditation is. You don’t have to shave your head, wear a robe, and kneel before a Buddha statue to meditate. Be it sitting in a classroom, riding in a car, watching TV, or sitting in a chair in a quiet room, there are countless techniques that can be used in just about any situation.
The doctors who prescribe my pain medications marvel that I have been on the same dosage for nearly ten years. Most people build a tolerance up to their dosage and constantly have to have it increased. I fight against that and use meditation to help prevent that from happening. Not to toot my own horn or anything—toot toot--but I feel I’ve been very successful in doing that.
If meditation isn’t in your toolbox of pain coping strategies, I would strongly encourage you to explore that option. There are many benefits to mediation that go beyond pain control.
Thankfully I don’t have the monsoon kind of pain crises too often. But when I do, they can last days or weeks. Usually I can control the pain myself and don’t have to go to the hospital. Morphine and methadone are the pain medications I use to control my back and hip pain. When I have a pain crisis, those prescriptions only dull the pain; quite often, they do little to nothing to help with a bad crisis and the only thing I can do is endure it. When I’m having a monsoon-level pain crisis and the pain medication stops providing any relief, sometimes the best thing for me to do is stop taking pain medication. Usually the pain is far less intense within twenty-four hours. Usually.
About two years ago, my hemoglobin dropped from eight to four. I’ve had so many pain blood transfusions that it’s become dangerous for me to have them. Blood transfusions are an absolute last resort with me. Instead, my doctor first tries to raise my hemoglobin with a prescription steroid called Prednisone. Though I had been given Prednisone before, my last experience soured me about ever trying it again.
It was suppose to help raise my red blood cell count, but the side affects were terrible. I was on edge, irritable, it kept me awake at night, and worst of all it caused horrific pain. On top of the pain crisis I was already having from a low hemoglobin count, the steroid caused my muscles to ache something fierce. The slightest amount of pressure from another person’s touch sent me into orbit. On a scale of one to ten, the pain I experienced for three months was a twelve. Like chick-flicks, the pain medication did nothing for me. It took all of my mental focus to cope with and manage the pain. By the end of the three months I was mentally exhausted.
The thing about Prednisone is, it takes two or more weeks for it to leave your system. Once my doctor told me to stop taking it, I still had to endure the pain it caused for another two or three weeks. All the pain was for nothing. Though it raised my blood count a little bit, I had to be transfused anyway two months later. Like I said, I had been given Prednisone in previous years, but it never caused the severe pain I experience the last time I took it. Needless to say, I have no desire to repeat that experience.
My purpose in sharing this with you isn’t just to ramble on mindlessly—which admittedly is a little problem of mine—but to show how important it is have a toolbox full of pain coping strategies. I’ve shared nearly all of mine in Sections 06) Controlling Your Pain and More on Meditation. Whether it’s: a monsoon-level pain crisis like when I was on Prednisone; a light mist-level pain crisis like I’ve had for the past month; or just my everyday back and hip pain, I use some form of meditation to manage my daily pain.
I was curious to know if other Sickle Cell patients use meditation to help manage their pain. Based on the response I received on the Sickle Cell Warriors facebook page, I don’t think many people do. In fact, several people scoffed at the idea of meditating while having a pain crisis.
Sometimes people have funny conceptions about what meditation is. You don’t have to shave your head, wear a robe, and kneel before a Buddha statue to meditate. Be it sitting in a classroom, riding in a car, watching TV, or sitting in a chair in a quiet room, there are countless techniques that can be used in just about any situation.
The doctors who prescribe my pain medications marvel that I have been on the same dosage for nearly ten years. Most people build a tolerance up to their dosage and constantly have to have it increased. I fight against that and use meditation to help prevent that from happening. Not to toot my own horn or anything—toot toot--but I feel I’ve been very successful in doing that.
If meditation isn’t in your toolbox of pain coping strategies, I would strongly encourage you to explore that option. There are many benefits to mediation that go beyond pain control.
Friday, August 30, 2013
Sickle Cell Pain Crises & Showers
For about three or four weeks now, I’ve been having a pain crisis. It’s not thunder, lightening, monsoon kind of pain crises that completely debilitates you; it’s more like a light mist. You know, the kind that messes up the wash job on your car; the annoying kind of pain crisis that hurts just enough to leave you feeling achy, icky, and tired.
When you have pain crises that run on for weeks, there are small things that are challenging; like taking a shower. I don’t know if other Sickle Cell patients experience this or not, but showering is often a painful chore.
For me, water has always been like a massive leech that sucks the life right out of me. Baths, spas, swimming pools, lakes...they all cause pain crises if I’m in them too long or if they are too cold. I’ve lived in California most of my life and have never swam in the ocean. I’ve been to the ocean, I’ve been on the ocean, and I’ve even put my footsies in the ocean, but that’s as far as I go; it’s much too cold.
As for showers, they often leave me exhausted and trigger a crisis. If I’m having a crisis that rivals a monsoon, I don’t bother with showers. In addition to the way water zaps my strength, the impact of the water on my skin is FAR too painful. If an intense pain crisis that lasts days—as smelly as it sounds--I have to skip showering. It’s terrible when you’re illness makes being clean a painful chore.
When I have a crisis, the pain is usually in my chest and back. The monsoon type of crises are whole body and it hurts to be touched. I can’t count the number of times I’ve gone to the hospital and had the following conversation with the evaluation nurse:
They will ask, “Are you having chest pain?” Telling a nurse in an ER that you are having chest pains is a sure way to immediately get seen. They have to assume that it’s your heart and that you are dying of a heart attack.
“I’m not having chest pains in the way that you mean, but I am having Sickle Cell pain which is in my chest.”
“So you’re having chest pain?”
“I’m having Sickle Cell pain, that happens to be in my chest.”
“So you are having chest pain.”
“No, I’ve having Sickle Cell pain in my chest, as well as my back and everywhere else.” And round the conversation goes. It’s like the Abbott and Costello routine, “Whose’ on first?”
I remember one day I went to a Church activity for single adults. I was having a pretty bad pain crisis and it was very taxing to go, but there was a certain young woman there I wanted to see. While at the social, I was sitting beside a guy I knew. He asked how I was feeling and I told him I was having a pain crisis. He went to place his hand on my knee in a reassuring manner, and I asked him to “please don’t touch me because it hurts to be touched right now."
Two seconds later he thoughtlessly, and void of any care, slammed his hand down on my knee and said, “Well, I hope you feel better.”
Pain coursed through my body and I yelled, “don’t touch me!” Idiot nearly fell out of my mouth, but I restrained. He wasn’t light on the Christmas tree.
When you have pain crises that run on for weeks, there are small things that are challenging; like taking a shower. I don’t know if other Sickle Cell patients experience this or not, but showering is often a painful chore.
For me, water has always been like a massive leech that sucks the life right out of me. Baths, spas, swimming pools, lakes...they all cause pain crises if I’m in them too long or if they are too cold. I’ve lived in California most of my life and have never swam in the ocean. I’ve been to the ocean, I’ve been on the ocean, and I’ve even put my footsies in the ocean, but that’s as far as I go; it’s much too cold.
As for showers, they often leave me exhausted and trigger a crisis. If I’m having a crisis that rivals a monsoon, I don’t bother with showers. In addition to the way water zaps my strength, the impact of the water on my skin is FAR too painful. If an intense pain crisis that lasts days—as smelly as it sounds--I have to skip showering. It’s terrible when you’re illness makes being clean a painful chore.
When I have a crisis, the pain is usually in my chest and back. The monsoon type of crises are whole body and it hurts to be touched. I can’t count the number of times I’ve gone to the hospital and had the following conversation with the evaluation nurse:
They will ask, “Are you having chest pain?” Telling a nurse in an ER that you are having chest pains is a sure way to immediately get seen. They have to assume that it’s your heart and that you are dying of a heart attack.
“I’m not having chest pains in the way that you mean, but I am having Sickle Cell pain which is in my chest.”
“So you’re having chest pain?”
“I’m having Sickle Cell pain, that happens to be in my chest.”
“So you are having chest pain.”
“No, I’ve having Sickle Cell pain in my chest, as well as my back and everywhere else.” And round the conversation goes. It’s like the Abbott and Costello routine, “Whose’ on first?”
I remember one day I went to a Church activity for single adults. I was having a pretty bad pain crisis and it was very taxing to go, but there was a certain young woman there I wanted to see. While at the social, I was sitting beside a guy I knew. He asked how I was feeling and I told him I was having a pain crisis. He went to place his hand on my knee in a reassuring manner, and I asked him to “please don’t touch me because it hurts to be touched right now."
Two seconds later he thoughtlessly, and void of any care, slammed his hand down on my knee and said, “Well, I hope you feel better.”
Pain coursed through my body and I yelled, “don’t touch me!” Idiot nearly fell out of my mouth, but I restrained. He wasn’t light on the Christmas tree.
Saturday, August 24, 2013
Growing Emotionally from Sickle Cell
Avascular necrosis is a complication of Sickle Cell Disease that I have always been aware of. Since eighteen years of age, I’ve had back pain related to it. I have several collapsed vertebra that give me a slightly humped back and a fair amount of pain. It has only been the past few years, however, that I became aware that hip replacement surgeries are common for SC patients, often in their twenties; as are shoulder replacements.
Living with Sickle Cell Anemia, there are a great many things I prepared myself for in life. Needing a double hip replacement surgery and ending up in a wheelchair was NOT among them. Emotionally, I’ve been completely caught off guard by this new challenge in my life.
One of the challenges I’m having is coming to terms with how people see me. All my life, other than being thin, I’ve looked perfectly healthy. I’ve been able to walk and move about normally. Now I either hobble around with a walker or use a wheelchair. People look at me differently, and this in turn causes me to look at myself differently. I know it’s pride, but I don’t like looking as sick and feeble as I feel.
Right now I’m in the process of getting my insurance to provide me with a proper wheelchair. At home, we have a hospital-like wheelchair that I’ve been using. But it’s too heavy for me to lift in and out of my car. So when I go places, I have to use a walker or have somebody go with me who’s strong enough to get my chair into and out of my car.
Just recently, a person from my church gave me a lightweight wheelchair; it was a wonderful act of kindness that I am very grateful for. However, it’s not the type of chair I can roll myself, I have to have somebody push me in it. It’s very humbling.
For the time being, I am unable to move freely about on my own. Accepting this has been a challenge. I’m hoping once I get a proper chair for myself that I will regain the mobility I’ve lost and reclaim portions of my life that.
One of the things that is making this transition a bit easier is the kindness of others. I find myself confronted with the generosity of friends and strangers on a regular basis. Most people go out of the way to open the door for me or help me in some other way.
Though I am having to accept that truth that I may be seen differently by others, this new trial is allowing me to see others differently as well. It’s easy to think there is only darkness in the world. But more often than not, I’m seeing a light in others that I did not see before.
When we face a new complication from our illness, when our health requires that we change our life in some way, it helps to find the good in it. I personally try to search for what can be learned from this newest trial. We can always grow from the challenges we face. We just have to be patient and wise enough to find how.
Living with Sickle Cell Anemia, there are a great many things I prepared myself for in life. Needing a double hip replacement surgery and ending up in a wheelchair was NOT among them. Emotionally, I’ve been completely caught off guard by this new challenge in my life.
One of the challenges I’m having is coming to terms with how people see me. All my life, other than being thin, I’ve looked perfectly healthy. I’ve been able to walk and move about normally. Now I either hobble around with a walker or use a wheelchair. People look at me differently, and this in turn causes me to look at myself differently. I know it’s pride, but I don’t like looking as sick and feeble as I feel.
Right now I’m in the process of getting my insurance to provide me with a proper wheelchair. At home, we have a hospital-like wheelchair that I’ve been using. But it’s too heavy for me to lift in and out of my car. So when I go places, I have to use a walker or have somebody go with me who’s strong enough to get my chair into and out of my car.
Just recently, a person from my church gave me a lightweight wheelchair; it was a wonderful act of kindness that I am very grateful for. However, it’s not the type of chair I can roll myself, I have to have somebody push me in it. It’s very humbling.
For the time being, I am unable to move freely about on my own. Accepting this has been a challenge. I’m hoping once I get a proper chair for myself that I will regain the mobility I’ve lost and reclaim portions of my life that.
One of the things that is making this transition a bit easier is the kindness of others. I find myself confronted with the generosity of friends and strangers on a regular basis. Most people go out of the way to open the door for me or help me in some other way.
Though I am having to accept that truth that I may be seen differently by others, this new trial is allowing me to see others differently as well. It’s easy to think there is only darkness in the world. But more often than not, I’m seeing a light in others that I did not see before.
When we face a new complication from our illness, when our health requires that we change our life in some way, it helps to find the good in it. I personally try to search for what can be learned from this newest trial. We can always grow from the challenges we face. We just have to be patient and wise enough to find how.
Saturday, August 17, 2013
Live a Long Life with Sickle Cell
When I launched this blog, I worried about finding enough subjects to write about each week. However, reading the Sickle Cell Warriors Facebook provides ample inspiration, and does so in many ways. One of the posts recently asked why many Sickle Cell patients believe they won’t live a long life. That question once again made me think about my view on this subject. I know I already covered this in Section 13) Believe You Will Live a Long Life, but I wanted to address it again and in a bit more depth.
I’m especially speaking directly to any and all young people reading this post. As a teenager--due to my many hospitalizations—I never believed I would live to see my eighteenth birthday. I was absolutely convinced of this. Nobody instilled that into me. My doctors never told me what my life expectancy was. My parents most certainly never treated me like my life was going to be short; this was something I had convinced myself of all on my own.
In spite of this belief, I had ambition in life. By the time I graduated high school, I wanted to be a psychologist; and that’s what I went to college for. Though I wanted to go to college, though I wanted to have a career, underneath that desire was the belief that I would not live to see it happen.
Going to college was difficult. Due to health complications, I often had to drop all my classes and retake them the next semester, where the same thing would happen. Though it took me six years, I earned an AA degree. Because it took so long to get a two-year degree, I really struggled to stay motivated to continue my education.
In addition to my falling motivation, I had it stuck in my head that I would never live long enough to achieve my career goals. I allowed this belief to dictate what I could and couldn’t do in life. I thought, “What’s the point in getting a degree? I will never live long enough to use it, and my health will never allow me to work.” I defeated myself before I even began in life.
After finally earning my two-year degree, I stopped going to college. However, I never stopped educating myself. Never has there been a time when I wasn’t studying something new, working on a project, learning about something that both interested and bettered me. Keeping my mind busy has always been important to me.
Now I’m forty years old. Crazy! From a teenage perspective, I must seem ancient. Trust me, some days I feel ancient; but I am amazed to still be here. Looking back, I have a lot of regret. I so regret that I never once believed I’d live a full life; I regret that I stopped myself from continuing my education or pursuing a career; I regret that I lived my life waiting to die.
Thankfully, there is still time. As stable as my health has been, there’s no reason to believe I won’t live another twenty or thirty years. There are many Sickle Cell patients out there who have lived into their 70’s and even 80’s. There are Sickle Cell patients out there who are doctors, nurses, lawyers, and musicians. So why can’t you or I do likewise? We can. The first step is, believing with all your heart, might, mind and spirit, that you WILL live a full life.
My purpose in this post, obviously, is to help any and all young readers fully embrace the truth that I did not. Don’t hope you will live a full life. Don’t believe you will live a full life. Know with absolute certainty that you WILL live a full life. Expect nothing else. Yes, you are going to be hospitalized. Yes, pain crises will come. Yes, unexpected complications of your illness will arise. But if you take care of your body, mind and spirit, there is no reason to believe you won’t live a full and happy life.
I’m especially speaking directly to any and all young people reading this post. As a teenager--due to my many hospitalizations—I never believed I would live to see my eighteenth birthday. I was absolutely convinced of this. Nobody instilled that into me. My doctors never told me what my life expectancy was. My parents most certainly never treated me like my life was going to be short; this was something I had convinced myself of all on my own.
In spite of this belief, I had ambition in life. By the time I graduated high school, I wanted to be a psychologist; and that’s what I went to college for. Though I wanted to go to college, though I wanted to have a career, underneath that desire was the belief that I would not live to see it happen.
Going to college was difficult. Due to health complications, I often had to drop all my classes and retake them the next semester, where the same thing would happen. Though it took me six years, I earned an AA degree. Because it took so long to get a two-year degree, I really struggled to stay motivated to continue my education.
In addition to my falling motivation, I had it stuck in my head that I would never live long enough to achieve my career goals. I allowed this belief to dictate what I could and couldn’t do in life. I thought, “What’s the point in getting a degree? I will never live long enough to use it, and my health will never allow me to work.” I defeated myself before I even began in life.
After finally earning my two-year degree, I stopped going to college. However, I never stopped educating myself. Never has there been a time when I wasn’t studying something new, working on a project, learning about something that both interested and bettered me. Keeping my mind busy has always been important to me.
Now I’m forty years old. Crazy! From a teenage perspective, I must seem ancient. Trust me, some days I feel ancient; but I am amazed to still be here. Looking back, I have a lot of regret. I so regret that I never once believed I’d live a full life; I regret that I stopped myself from continuing my education or pursuing a career; I regret that I lived my life waiting to die.
Thankfully, there is still time. As stable as my health has been, there’s no reason to believe I won’t live another twenty or thirty years. There are many Sickle Cell patients out there who have lived into their 70’s and even 80’s. There are Sickle Cell patients out there who are doctors, nurses, lawyers, and musicians. So why can’t you or I do likewise? We can. The first step is, believing with all your heart, might, mind and spirit, that you WILL live a full life.
My purpose in this post, obviously, is to help any and all young readers fully embrace the truth that I did not. Don’t hope you will live a full life. Don’t believe you will live a full life. Know with absolute certainty that you WILL live a full life. Expect nothing else. Yes, you are going to be hospitalized. Yes, pain crises will come. Yes, unexpected complications of your illness will arise. But if you take care of your body, mind and spirit, there is no reason to believe you won’t live a full and happy life.
Thursday, August 8, 2013
Green Salads and Sickle Cell
In addition to having lost a lot of weight, I haven’t felt very well physically. I’ve felt exceptionally tired, had zero energy, I’ve been mentally cloudy, and have generally felt listless. To put it simply, I’ve felt like a zombie for many months.
Talking with my nutty nutritionally obsessed brother—I love you Chuck—he suggested a few things. Actually, he suggested about 10,000 things; but I was able to absorb only some of the tidal wave of information he gave me.
He told me to eat a salad every single day. In the salad he told me to put: kale, bok choy, spinach, and Romaine lettuce; basically any kind of green leafy lettuce. So for the past week, that’s what I’ve been doing. I mix all those together, add an entire avocado, crotons, bacon bits, tomatoes, cucumbers and some salad dressing. Sometimes I make a smoothie instead—I’ve found tons of recipes online.
Within three days I began noticing a difference in how I felt. A week of doing it, I felt AMAZINGLY better. I felt alert, energetic, and more mentally clear than I have in a long time. Sunday and Tuesday of this week I failed to eat my daily salad. With each day I began to feel more tired than I did the day before. When I began eating my salads again, surprise, I began to feel better again.
I’m trying to put forth the effort educate myself about nutrition. Doing just the little bit that I have has really had a positive difference in how I physically and mentally feel. I can’t help but wonder...if eating a salad and avocado a day can make the HUGE difference that I’ve experienced, what can more significant changes do for me?
I’ve always knows eating balanced meals has impacted my health. But beyond that, I never really thought much about nutrition. But I am now. And if you haven’t, perhaps you should.
Talking with my nutty nutritionally obsessed brother—I love you Chuck—he suggested a few things. Actually, he suggested about 10,000 things; but I was able to absorb only some of the tidal wave of information he gave me.
He told me to eat a salad every single day. In the salad he told me to put: kale, bok choy, spinach, and Romaine lettuce; basically any kind of green leafy lettuce. So for the past week, that’s what I’ve been doing. I mix all those together, add an entire avocado, crotons, bacon bits, tomatoes, cucumbers and some salad dressing. Sometimes I make a smoothie instead—I’ve found tons of recipes online.
Within three days I began noticing a difference in how I felt. A week of doing it, I felt AMAZINGLY better. I felt alert, energetic, and more mentally clear than I have in a long time. Sunday and Tuesday of this week I failed to eat my daily salad. With each day I began to feel more tired than I did the day before. When I began eating my salads again, surprise, I began to feel better again.
I’m trying to put forth the effort educate myself about nutrition. Doing just the little bit that I have has really had a positive difference in how I physically and mentally feel. I can’t help but wonder...if eating a salad and avocado a day can make the HUGE difference that I’ve experienced, what can more significant changes do for me?
I’ve always knows eating balanced meals has impacted my health. But beyond that, I never really thought much about nutrition. But I am now. And if you haven’t, perhaps you should.
Sicke Cell: Gaining Weight with Avocados
Over the past two years, I have gone from weighing 125lbs to 99lbs. In my post, Sold on Ensure, I spoke about how drinking this product twice a day had helped me put on three pounds. After about two weeks, I stopped drinking Ensure because I noticed my ankles were swelling. The product has moderate levels of potassium in it, and potassium is something I have to be very careful with. When I stopped drinking Ensure, the swelling went away. So until I talk with my doctor about how much Ensure is safe for me to drink, I’m holding off on adding it to my diet.
When I stopped drinking Ensure, I lost the weight I had gained and dropped down to 99lbs. Clearly this isn’t good. I’m very concerned about my weight loss. Talking with my brother, who is BIG into nutrition, he told me to eat 2-3 avocados every single day.
Avocados are a high calorie natural food. People trying to loose weight often eat nothing but avocados. So I gave it shot. For about three weeks now, in addition to my three meals a day and snacks in between, I’ve been eating one to two avocados each day. The other day I stepped on the scale and was amazed to see that I had put on eight pounds! Wahoo!
In the afternoon and/or evening, I will cut an avocado in half, sprinkle a little salt and pepper on each half, and scoop out a spoonful at a time and eat it. I use them as a snack, not a meal; or I will eat one with my meal; or I will make a salad and cut the avocado into chunks and put it on my salad (yes, the entire avocado; pit and peel excluded).
Hopefully I will keep gaining weight as I continue to do this. So if you or your child has a problem gaining weight, a problem not entirely unique to Sickle Cell patients, I would suggest try adding avocados to your diet.
When I stopped drinking Ensure, I lost the weight I had gained and dropped down to 99lbs. Clearly this isn’t good. I’m very concerned about my weight loss. Talking with my brother, who is BIG into nutrition, he told me to eat 2-3 avocados every single day.
Avocados are a high calorie natural food. People trying to loose weight often eat nothing but avocados. So I gave it shot. For about three weeks now, in addition to my three meals a day and snacks in between, I’ve been eating one to two avocados each day. The other day I stepped on the scale and was amazed to see that I had put on eight pounds! Wahoo!
In the afternoon and/or evening, I will cut an avocado in half, sprinkle a little salt and pepper on each half, and scoop out a spoonful at a time and eat it. I use them as a snack, not a meal; or I will eat one with my meal; or I will make a salad and cut the avocado into chunks and put it on my salad (yes, the entire avocado; pit and peel excluded).
Hopefully I will keep gaining weight as I continue to do this. So if you or your child has a problem gaining weight, a problem not entirely unique to Sickle Cell patients, I would suggest try adding avocados to your diet.
Being Thin with Sickle Cell
All my life I have been very thin and small framed. When I was sixteen years old I was 5ft. 2in. tall and weighed all of 70lbs. I stopped growing around age twenty-one at 5ft 10in. and finally broke one hundred pounds in my mid-twenties. At the age of thirty-one, I weighed more than I ever had, 130lbs. I leveled out at 125lbs and stayed there until I was hospitalized in 2011.
During my 2011 hospitalization, I lost nearly fifteen pounds. Over the following two years, I lost another eleven pounds, putting my weight at 99lbs! That’s how much I weighed a month ago. Needless to say, I have been very concerned about my weight.
As a child, though my mom was/is a great cook, though I ate like a horse and ate healthy, nothing my mom tried would help me put on the pounds. I don’t know how many nutritionists lectured my mom during my plethora of hospital stays. They thought she wasn’t feeding me correctly. Though my mom did her best to inform them she knew all about nutrition and feed me well, she held her tongue and didn’t chew them out. In adulthood, I had the opportunity to vindicate my dear sweet mom.
I was about twenty-five years old. I was hospitalized for something or another. During my hospitalization, a nutritionist made an appearance in my room. Apparently I was in the wrong mood. She plopped herself down in the chair beside my bed and immediately began lecturing me about my weight.
“Let me stop you there,” I said. “My whole life my mom and I have had to endure you nutritionist coming in and lecturing me about nutrition. I know how to eat healthy and I eat very healthy meals. I am naturally thin. I don’t need you to come in here and lecture me when you don’t know anything about how I eat. So why don’t you leave and don’t ever come back.”
Needless to say, she left without a word. And though I’ve been hospitalized a few times since then, I’ve never had another nutritionist come into my room and bother me. There’s probably some red flag in my medical file that says, “Whatever you do, don’t send a nutritionist into this patient’s room!”
When I told my mom about the incident, she later told me, “I have to admit, I felt a little vindicated. I wanted to do that so many times when you were a kid.” Normally, I’m a very nice and polite patient. I’ve learned from too many hospitalizations...sometimes you just have to be not so polite.
For me, weight has always been a struggle. If/when I catch a flu or am hospitalized, the pounds have always flown off and been very slow coming back. It has never mattered what I ate or how much I ate, I couldn’t gain weight. Being lactose intolerant, missing a gallbladder (making it hard to eat fatty foods), and having to watch my intake of potassium and sodium, it’s hard to find foods I can eat.
During my 2011 hospitalization, I lost nearly fifteen pounds. Over the following two years, I lost another eleven pounds, putting my weight at 99lbs! That’s how much I weighed a month ago. Needless to say, I have been very concerned about my weight.
As a child, though my mom was/is a great cook, though I ate like a horse and ate healthy, nothing my mom tried would help me put on the pounds. I don’t know how many nutritionists lectured my mom during my plethora of hospital stays. They thought she wasn’t feeding me correctly. Though my mom did her best to inform them she knew all about nutrition and feed me well, she held her tongue and didn’t chew them out. In adulthood, I had the opportunity to vindicate my dear sweet mom.
I was about twenty-five years old. I was hospitalized for something or another. During my hospitalization, a nutritionist made an appearance in my room. Apparently I was in the wrong mood. She plopped herself down in the chair beside my bed and immediately began lecturing me about my weight.
“Let me stop you there,” I said. “My whole life my mom and I have had to endure you nutritionist coming in and lecturing me about nutrition. I know how to eat healthy and I eat very healthy meals. I am naturally thin. I don’t need you to come in here and lecture me when you don’t know anything about how I eat. So why don’t you leave and don’t ever come back.”
Needless to say, she left without a word. And though I’ve been hospitalized a few times since then, I’ve never had another nutritionist come into my room and bother me. There’s probably some red flag in my medical file that says, “Whatever you do, don’t send a nutritionist into this patient’s room!”
When I told my mom about the incident, she later told me, “I have to admit, I felt a little vindicated. I wanted to do that so many times when you were a kid.” Normally, I’m a very nice and polite patient. I’ve learned from too many hospitalizations...sometimes you just have to be not so polite.
For me, weight has always been a struggle. If/when I catch a flu or am hospitalized, the pounds have always flown off and been very slow coming back. It has never mattered what I ate or how much I ate, I couldn’t gain weight. Being lactose intolerant, missing a gallbladder (making it hard to eat fatty foods), and having to watch my intake of potassium and sodium, it’s hard to find foods I can eat.
Saturday, August 3, 2013
SCD & Emotional Barriers #5: Friendships
As a person whose lived with Sickle Cell Disease for forty years, I’ve had my illness impact many friendships in positive and negative ways. It makes all the difference when you have friends who understand and are considerate about your condition. Indifferent friends, however, most certainly add bricks to the walls we build around ourselves.
About four years ago I went on an outing in the mountains with a group of friends. Each of them knew I had Sickle Cell. While driving to our destination, one friend complained how painful it was to move because his muscles were sore from working out the day before. I said to him, “Now you have some idea what a Sickle Cell pain crisis feels like.”
His reply was, “A what?”
My heart sank a little bit. I had been friends with this young man a few years. He frequently came to my house. Though he knew I had Sickle Cell, though we were friends, he was completely ignorant of what a Sickle Cell pain crisis was.
Later that day when my friends and I arrived at our mountain destination, we did a lot of walking. As a result of the high elevation, my reduced heart function and lung capacity, I wasn’t able to keep up with my friends. I walked slower and was further behind them. In our group there were about ten people who knew about my health condition, and several people whom I had just met.
You would think my friends would have been aware and concerned that I fell behind. But they weren’t. Of nearly a dozen friends, it was a friend’s friend whom I had just met who walked with me at slower pace. A stranger was more considerate than friends I had known for years. It’s events like the two I just shared that cause Sickle Cell patients to put up walls.
On the flip side, I’ve had many considerate friends. Something I often say is, “I can make plans, but my body can change them.” People who are close to me know that everything we plan is tentative. It doesn’t matter if we’ve scheduled something six months ahead of time; a pain crisis could strike at the very last moment and shatter my plans.
I think of one young woman in particular, Natalie; I marvel at her patience. I had asked Natalie out on a date. Unlike most girls, she said yes. The big day came. But hours before I was to pick her up, I was hit with a terrible pain crisis. I was in no condition to go anywhere.
When I called to tell her, she was amazingly understanding. So we tried again for the next week. Unfortunately the exact same thing happened and I had to cancel on her not only a second but a third time! I still can’t believe she gave me the time of day after that. Incredibly, she gave me a fourth chance. Thank goodness my body cooperated and I was finally able to take her out. She and I became very good friends. Other people have not been as understanding. Some friends, when I’ve had to repetitively cancel on them, stopped calling or lost interest.
For everyone living with Sickle Cell Anemia, it is an unfortunate reality that our body can change our best laid plans. Friends who refuse to understand why this happens are the ones who, if we allow them, cause us to built barriers. It's the people who understand this reality are those with whom we can build meaningful relationships with.
To any friend, family, or love interest who is close to somebody with Sickle Cell Disease, I ask that you please be patient. Your friend with SCD is going to have to cancel your plans from time to time; sometimes very frequently. Know your friend is just as upset about not going out as you are, perhaps even more so. For you, it may be an inconvenience; for them, it's a frustrating byproduct of living with a chronic illness. Be forgiving and tolerant. Doing so will benefit your loved one in more ways than you know.
About four years ago I went on an outing in the mountains with a group of friends. Each of them knew I had Sickle Cell. While driving to our destination, one friend complained how painful it was to move because his muscles were sore from working out the day before. I said to him, “Now you have some idea what a Sickle Cell pain crisis feels like.”
His reply was, “A what?”
My heart sank a little bit. I had been friends with this young man a few years. He frequently came to my house. Though he knew I had Sickle Cell, though we were friends, he was completely ignorant of what a Sickle Cell pain crisis was.
Later that day when my friends and I arrived at our mountain destination, we did a lot of walking. As a result of the high elevation, my reduced heart function and lung capacity, I wasn’t able to keep up with my friends. I walked slower and was further behind them. In our group there were about ten people who knew about my health condition, and several people whom I had just met.
You would think my friends would have been aware and concerned that I fell behind. But they weren’t. Of nearly a dozen friends, it was a friend’s friend whom I had just met who walked with me at slower pace. A stranger was more considerate than friends I had known for years. It’s events like the two I just shared that cause Sickle Cell patients to put up walls.
On the flip side, I’ve had many considerate friends. Something I often say is, “I can make plans, but my body can change them.” People who are close to me know that everything we plan is tentative. It doesn’t matter if we’ve scheduled something six months ahead of time; a pain crisis could strike at the very last moment and shatter my plans.
I think of one young woman in particular, Natalie; I marvel at her patience. I had asked Natalie out on a date. Unlike most girls, she said yes. The big day came. But hours before I was to pick her up, I was hit with a terrible pain crisis. I was in no condition to go anywhere.
When I called to tell her, she was amazingly understanding. So we tried again for the next week. Unfortunately the exact same thing happened and I had to cancel on her not only a second but a third time! I still can’t believe she gave me the time of day after that. Incredibly, she gave me a fourth chance. Thank goodness my body cooperated and I was finally able to take her out. She and I became very good friends. Other people have not been as understanding. Some friends, when I’ve had to repetitively cancel on them, stopped calling or lost interest.
For everyone living with Sickle Cell Anemia, it is an unfortunate reality that our body can change our best laid plans. Friends who refuse to understand why this happens are the ones who, if we allow them, cause us to built barriers. It's the people who understand this reality are those with whom we can build meaningful relationships with.
To any friend, family, or love interest who is close to somebody with Sickle Cell Disease, I ask that you please be patient. Your friend with SCD is going to have to cancel your plans from time to time; sometimes very frequently. Know your friend is just as upset about not going out as you are, perhaps even more so. For you, it may be an inconvenience; for them, it's a frustrating byproduct of living with a chronic illness. Be forgiving and tolerant. Doing so will benefit your loved one in more ways than you know.
Friday, July 26, 2013
SCD & Emotional Barriers #4: Isolation
Looking at the walls I’ve built up around myself, I see some contributing factors. One of those factors has come from not having friends visit me when I’m sick.
To date, I have been admitted to Loma Linda University Medical Center one hundred sixteen times. Over 100 occurred from ages 9-18. During those nine years, I never once had a classmate or friend visit me in the hospital; not once. I had my parents, siblings, bishops from my church, and a few church members visit me, but never a friend. Even as an adult the number of friends who've visited in the hospital has been very, very small.
When nobody visits--and I was blessed to have a family that did--when nobody calls or writes...let me tell you, it adds bricks to the wall we build around our emotions. When I came back to school or church from a long illness and people said, “I was so worried about you,” my first thought was, “Not worried enough to visit, call or write apparently.” Though there may be reasons for this--which I talk about in Section 17--it still hurts.
When a person's words of compassion are louder than their acts of compassion, resentment builds. You feel as though people don’t care; you believe their concerned expressions are just empty words; and you think, what's the point in sharing your life with anybody? When you hold the belief that there isn't anybody who sincerely cares about our well-being, it's difficult to open up and let in the people who do genuinely care.
Chronic illness forces you to be isolated for days, weeks, months or even years at a time. When this happens, you learn to do things for yourself and by yourself. You become use to the solitude and begin to emotionally withdraw yourself from others.
To parents who ask, "How can I help my child not build walls around their emotions?" My answer is--in addition to the things I talked about in Part two and three--encourage your child's friends and classmates to:
•visit your son/daughter in the hospital or at home;
•call your child on the phone if they can't visit;
•send cards or emotions that express their love;
•do something to let your child know they are missed.
Those simple acts of love can make a big difference.
To date, I have been admitted to Loma Linda University Medical Center one hundred sixteen times. Over 100 occurred from ages 9-18. During those nine years, I never once had a classmate or friend visit me in the hospital; not once. I had my parents, siblings, bishops from my church, and a few church members visit me, but never a friend. Even as an adult the number of friends who've visited in the hospital has been very, very small.
When nobody visits--and I was blessed to have a family that did--when nobody calls or writes...let me tell you, it adds bricks to the wall we build around our emotions. When I came back to school or church from a long illness and people said, “I was so worried about you,” my first thought was, “Not worried enough to visit, call or write apparently.” Though there may be reasons for this--which I talk about in Section 17--it still hurts.
When a person's words of compassion are louder than their acts of compassion, resentment builds. You feel as though people don’t care; you believe their concerned expressions are just empty words; and you think, what's the point in sharing your life with anybody? When you hold the belief that there isn't anybody who sincerely cares about our well-being, it's difficult to open up and let in the people who do genuinely care.
Chronic illness forces you to be isolated for days, weeks, months or even years at a time. When this happens, you learn to do things for yourself and by yourself. You become use to the solitude and begin to emotionally withdraw yourself from others.
To parents who ask, "How can I help my child not build walls around their emotions?" My answer is--in addition to the things I talked about in Part two and three--encourage your child's friends and classmates to:
•visit your son/daughter in the hospital or at home;
•call your child on the phone if they can't visit;
•send cards or emotions that express their love;
•do something to let your child know they are missed.
Those simple acts of love can make a big difference.
SCD & Emotional Barriers #3: Apathy
There is a line in the movie about Jack Robinson, 42. The line is: "The word 'sympathy' comes from the Greek word 'suffer'. To sympathize with somebody means to suffer with somebody." It's a great quote from a great movie.
Sympathy is something that is taught. I give so much credit to my mother. I can’t recall all the times she said to me, “Try to put yourself in that person’s position,” or, “Try to imagine how that person feels.”
With the amount of pain and hospitalizations Sickle Cell patients experience, it can be very easy to become apathetic towards to the suffering of others. I credit my parents for my ability to recognize when another person is in pain and to have compassion for that pain.
It has always bothered me when somebody says to me, “I know my pain doesn’t compare to yours.” My thought is, “We all feel and cope with pain differently; and we all have our own trials in life.” I can’t allow myself to think my trial is so much greater than another individual's. I haven’t lived that person’s life; maybe what I consider to be a light amount of pain would be horrific for somebody else. Or perhaps they have mental or emotional pain far beyond what I endure. (For more on this, see Section 12).
I’m not saying I’m perfect in this area. There are times when I catch myself silently scoffing at somebody who is crying about something I would consider to be very minor. But I have to remind myself that I don’t know what’s going on in their life.
Having compassion for the suffering of another living being must be taught. When a child is continuously left to fend for themselves, left alone in a hospital bed, and is not shown compassion by loved ones, barriers build. The metaphorical skin becomes impossibly thick; the mind becomes hardened; and compassion is lost. It’s the responsibility of parents, grandparents, aunts, uncles, and loved ones to teach children how to be compassionate in spite of their own suffering.
There is an individual I know who, as a child, was never taught to think about how other people feel. Now, as an adult, this person is extremely self-centered. The only thing that matters is what he wants. He does not recognize the generosity of others; he does not appreciate what he has; and he does not seem to care about anybody but himself.
I can’t entirely blame this person for being the way he is. The compassion that was instilled in me from my youth was absent in his life. When our circumstances have caused us to steel ourselves against seeing other people’s misery, it’s hard to build deep emotional relationships other people.
Part of connecting with other people comes from wanting to love and be loved. In my mind, a compassionate heart is vital to building lasting relationships. If a child is not taught how to have that compassion...then it’s going to be extremely challenging for him/her to form meaningful bonds with others as an adult.
When your child with Sickle Cell is in the hospital, there will be many opportunities to teach her about having sympathy for the children around her. In spite of your child's suffering, seize upon those teaching opportunities. If your child is left alone, who will teach those vital lessons?
Sympathy is something that is taught. I give so much credit to my mother. I can’t recall all the times she said to me, “Try to put yourself in that person’s position,” or, “Try to imagine how that person feels.”
With the amount of pain and hospitalizations Sickle Cell patients experience, it can be very easy to become apathetic towards to the suffering of others. I credit my parents for my ability to recognize when another person is in pain and to have compassion for that pain.
It has always bothered me when somebody says to me, “I know my pain doesn’t compare to yours.” My thought is, “We all feel and cope with pain differently; and we all have our own trials in life.” I can’t allow myself to think my trial is so much greater than another individual's. I haven’t lived that person’s life; maybe what I consider to be a light amount of pain would be horrific for somebody else. Or perhaps they have mental or emotional pain far beyond what I endure. (For more on this, see Section 12).
I’m not saying I’m perfect in this area. There are times when I catch myself silently scoffing at somebody who is crying about something I would consider to be very minor. But I have to remind myself that I don’t know what’s going on in their life.
Having compassion for the suffering of another living being must be taught. When a child is continuously left to fend for themselves, left alone in a hospital bed, and is not shown compassion by loved ones, barriers build. The metaphorical skin becomes impossibly thick; the mind becomes hardened; and compassion is lost. It’s the responsibility of parents, grandparents, aunts, uncles, and loved ones to teach children how to be compassionate in spite of their own suffering.
There is an individual I know who, as a child, was never taught to think about how other people feel. Now, as an adult, this person is extremely self-centered. The only thing that matters is what he wants. He does not recognize the generosity of others; he does not appreciate what he has; and he does not seem to care about anybody but himself.
I can’t entirely blame this person for being the way he is. The compassion that was instilled in me from my youth was absent in his life. When our circumstances have caused us to steel ourselves against seeing other people’s misery, it’s hard to build deep emotional relationships other people.
Part of connecting with other people comes from wanting to love and be loved. In my mind, a compassionate heart is vital to building lasting relationships. If a child is not taught how to have that compassion...then it’s going to be extremely challenging for him/her to form meaningful bonds with others as an adult.
When your child with Sickle Cell is in the hospital, there will be many opportunities to teach her about having sympathy for the children around her. In spite of your child's suffering, seize upon those teaching opportunities. If your child is left alone, who will teach those vital lessons?
SCD & Emotional Barriers #2: Being Alone
One of the BIGGEST things that can cause a person to build emotional barriers around themselves stems from being left alone in a hospital as a child.
A hospital bed is a scary and lonely place. I was at church one day when a man was talking about his recent hospital experience. He said, “I’ve never felt more alone and isolated than I did when I was in the hospital by myself.” If a big, two hundred pound burly man admits how alone he felt in a hospital bed, then try to imagine how much more so that would be for a child. And trust me, it is a sad and lonely place to spend much of your life in; speaking as a patient.
After I had a massive stroke at the age of nine, I began receiving monthly blood transfusions. Every six weeks I was admitted to the hospital for 2-3 days. Until I reached the age of about twelve or thirteen, one of my parents stayed with me all through the night and most of the day. My mom would stay with me at the hospital during the day. Then when my father got off work, they would switch and my dad stayed with me all through the night. If I was alone it was only for a few hours at a time. My younger sister Kimi was a severely handicapped and full-care child. So it wasn’t an easy task to make sure that one of my parents was with me in the hospital as much as possible.
This was in stark contrast to what I saw from the families of many other children whom I shared a hospital room with. At that very young age I was acutely aware that many of the children were seldom visited. For some of these other kids, two, three or more days would pass before anybody would visit them; and often the visit was very brief.
I vividly recall one infant. I think I was ten years old. For the entire duration of my week long stay, nobody ever came to see or hold this baby. It laid in it’s crib, nearly motionless, entirely unloved. Though I was very young, I was emotionally impacted by that; and it’s something that still haunts me. I've often wondered what became of that baby.
When a child is left unattended in a hospital, things can happen. Some nurses can behave one way around parents and very differently in their absence. Young ambitious doctors can be too eager and aggressive in how they treat a patient. Two examples come to mind.
The first occurred when I was around ten years old. I don’t recall why, but the doctors needed to perform a spinal tap on me. I think my dad was with me during the tap, but had to leave for work immediately after. My mom would take her shift once she got my sister off to school.
After the spinal tap was over, the doctors told me not to move around too much for at least forty-five minutes or it could injure my spine. Later my mom showed up. When she saw me sitting nearly motionless in the bed serious faced, she asked what was wrong. “The doctor’s told me not to move for forty-five minutes,” I said.
“What time was that?” she asked. I told her what time the spinal tap was over with. “Jon! That was three hours ago!”
“I know. I was scared to move.”
In the words of my mother, “That is a good example of why a parent needs to be present.” Imagine if my mother hadn’t come that day. That fear I felt for three hours could have lasted far longer had she not been there.
When a child is continuously being poked with needles, prodded by doctors, and sometimes mistreated by apathetic nurses, and there isn’t a loved one present to provide love, comfort, and reassurance...emotional barriers build. Without the presence of somebody who is emotionally invested in the child’s well-being, that child feels:
• A gaping pit of loneliness within their breast;
• As though nobody cares whether they live or die;
• Afraid of what could, and is happening;
• Depression unlike any other.
Parents, if you have a child in the hospital, please, please be there as much as you possibly can. And if you cannot be there, make sure somebody the child loves and trusts is. Yes, there will be minutes and hours when your child is alone; that can’t be helped and is fine. What isn’t fine, what will have lasting negative consequences to your child's psyche is when he/she is left alone in a hospital bed far more than having a loved one present. It's my belief that a child who is left alone will become a lonely adult.
A hospital bed is a scary and lonely place. I was at church one day when a man was talking about his recent hospital experience. He said, “I’ve never felt more alone and isolated than I did when I was in the hospital by myself.” If a big, two hundred pound burly man admits how alone he felt in a hospital bed, then try to imagine how much more so that would be for a child. And trust me, it is a sad and lonely place to spend much of your life in; speaking as a patient.
After I had a massive stroke at the age of nine, I began receiving monthly blood transfusions. Every six weeks I was admitted to the hospital for 2-3 days. Until I reached the age of about twelve or thirteen, one of my parents stayed with me all through the night and most of the day. My mom would stay with me at the hospital during the day. Then when my father got off work, they would switch and my dad stayed with me all through the night. If I was alone it was only for a few hours at a time. My younger sister Kimi was a severely handicapped and full-care child. So it wasn’t an easy task to make sure that one of my parents was with me in the hospital as much as possible.
This was in stark contrast to what I saw from the families of many other children whom I shared a hospital room with. At that very young age I was acutely aware that many of the children were seldom visited. For some of these other kids, two, three or more days would pass before anybody would visit them; and often the visit was very brief.
I vividly recall one infant. I think I was ten years old. For the entire duration of my week long stay, nobody ever came to see or hold this baby. It laid in it’s crib, nearly motionless, entirely unloved. Though I was very young, I was emotionally impacted by that; and it’s something that still haunts me. I've often wondered what became of that baby.
When a child is left unattended in a hospital, things can happen. Some nurses can behave one way around parents and very differently in their absence. Young ambitious doctors can be too eager and aggressive in how they treat a patient. Two examples come to mind.
The first occurred when I was around ten years old. I don’t recall why, but the doctors needed to perform a spinal tap on me. I think my dad was with me during the tap, but had to leave for work immediately after. My mom would take her shift once she got my sister off to school.
After the spinal tap was over, the doctors told me not to move around too much for at least forty-five minutes or it could injure my spine. Later my mom showed up. When she saw me sitting nearly motionless in the bed serious faced, she asked what was wrong. “The doctor’s told me not to move for forty-five minutes,” I said.
“What time was that?” she asked. I told her what time the spinal tap was over with. “Jon! That was three hours ago!”
“I know. I was scared to move.”
In the words of my mother, “That is a good example of why a parent needs to be present.” Imagine if my mother hadn’t come that day. That fear I felt for three hours could have lasted far longer had she not been there.
When a child is continuously being poked with needles, prodded by doctors, and sometimes mistreated by apathetic nurses, and there isn’t a loved one present to provide love, comfort, and reassurance...emotional barriers build. Without the presence of somebody who is emotionally invested in the child’s well-being, that child feels:
• A gaping pit of loneliness within their breast;
• As though nobody cares whether they live or die;
• Afraid of what could, and is happening;
• Depression unlike any other.
Parents, if you have a child in the hospital, please, please be there as much as you possibly can. And if you cannot be there, make sure somebody the child loves and trusts is. Yes, there will be minutes and hours when your child is alone; that can’t be helped and is fine. What isn’t fine, what will have lasting negative consequences to your child's psyche is when he/she is left alone in a hospital bed far more than having a loved one present. It's my belief that a child who is left alone will become a lonely adult.
SCD & Emotional Barriers #1 - Intro
Last week on the facebook page Sickle Cell Warriors, I posted the following question:
“I’ve learned, through a lifetime of Sickle Cell pain, how to disconnect myself from that pain to a large degree. In some ways I feel as though I have applied that ability to emotional pain. Does anyone else feel as though Sickle Cell has caused you to put an emotional barrier, thus making it difficult to connect with others?”
I was very surprised by the response; I received more than a hundred likes and nearly forty comments in less than twenty-four hours. Every single person who wrote a reply felt as I did. The emotional struggle of living with Sickle Cell—or any chronic illness for that matter—has far more reaching consequences than we sometimes realize.
One young man said he has a hard time asking girls out on dates because he feels he can’t get close to them. One woman wrote, when she has to go to the ER, she tells her family to leave her at the door and go home; when coping with pain, it’s too difficult for her to have family around. Some feel they receive little or no sympathy from loved ones, which naturally builds walls around those relationships.
From a lifetime of complications, pain, and hospitalizations, some have difficulty recognizing or having sympathy for other people’s pain. Because no one understands their situation, some feel as though people won’t/can’t love them enough to stick by them during the hard times.
One woman wrote, “As a mother of a child with Sickle cell, is there something I can do to prevent him from developing that wall? What could your parents have done differently?”
As I’ve thought about this subject, I realize I can’t briefly answer this in one post. I think it best to break the topic up into several smaller ones. I feel this topic is a very important one and I want to come at it from a few different angles.
“I’ve learned, through a lifetime of Sickle Cell pain, how to disconnect myself from that pain to a large degree. In some ways I feel as though I have applied that ability to emotional pain. Does anyone else feel as though Sickle Cell has caused you to put an emotional barrier, thus making it difficult to connect with others?”
I was very surprised by the response; I received more than a hundred likes and nearly forty comments in less than twenty-four hours. Every single person who wrote a reply felt as I did. The emotional struggle of living with Sickle Cell—or any chronic illness for that matter—has far more reaching consequences than we sometimes realize.
One young man said he has a hard time asking girls out on dates because he feels he can’t get close to them. One woman wrote, when she has to go to the ER, she tells her family to leave her at the door and go home; when coping with pain, it’s too difficult for her to have family around. Some feel they receive little or no sympathy from loved ones, which naturally builds walls around those relationships.
From a lifetime of complications, pain, and hospitalizations, some have difficulty recognizing or having sympathy for other people’s pain. Because no one understands their situation, some feel as though people won’t/can’t love them enough to stick by them during the hard times.
One woman wrote, “As a mother of a child with Sickle cell, is there something I can do to prevent him from developing that wall? What could your parents have done differently?”
As I’ve thought about this subject, I realize I can’t briefly answer this in one post. I think it best to break the topic up into several smaller ones. I feel this topic is a very important one and I want to come at it from a few different angles.
Thursday, July 18, 2013
Friendship and Sickle Cell Disease
I was thinking of a recent experience, which is not at all a unique one. When I learned that I would be unable to have my hip replacement surgeries, I naturally sought comfort from loved ones. I was gravely disappointed when I went to one individual’s house. I spent three minutes talking about what I was dealing with and listened for fifteen minutes about something else entirely unrelated, at which point the topic was totally changed. Needless to say I gave up trying to talk about my situation with them.
The second individual I tried to speak with was also a let down. I spoke to them for five minutes about my news, and that was all I got out. Rather than just listening to what I needed to express, I had to listen to what he wanted to express to me.
I spoke of a similar topic in the section 17) About Friends and Family. Often, when a person hears about your latest tribulation, they simply don’t know what to say. Because they don’t know what to say, they may: 1) avoid you until the event is over; 2) avoid talking about the subject entirely; or 3) simply say nothing at all. It’s not because they don’t care, it’s because they don’t know what to say.
If you are a friend or family member of a person living with a chronic or terminal illness, please understand. Understand that your loved one is struggling to come to terms with this new crisis in their life; and when they finally choose to share it with you for the first time, understand that all your loved one wants is for you to listen. You don’t need to offer solutions; you don’t need to search for ways to fix the problem at that point; and you ought not change the subject so you don’t have to hear what’s on their mind.
What your loved one wants/needs from you is a compassionate heart and an ear willing to listen. That’s it. Just listen. You don’t have to give advice; you don’t have to say anything profound or wise. All you have to do is listen. I know from a multitude of personal experiences how extremely disheartening it is when those you most rely upon cannot provide this. I also know from personal experience how profoundly comforting it is when loved ones do provide this.
Please, be sensitive to your loved one’s needs. Please, don’t be afraid to be silent. And to those suffering through difficult trials, please be patient with the shortcomings of others.
The second individual I tried to speak with was also a let down. I spoke to them for five minutes about my news, and that was all I got out. Rather than just listening to what I needed to express, I had to listen to what he wanted to express to me.
I spoke of a similar topic in the section 17) About Friends and Family. Often, when a person hears about your latest tribulation, they simply don’t know what to say. Because they don’t know what to say, they may: 1) avoid you until the event is over; 2) avoid talking about the subject entirely; or 3) simply say nothing at all. It’s not because they don’t care, it’s because they don’t know what to say.
If you are a friend or family member of a person living with a chronic or terminal illness, please understand. Understand that your loved one is struggling to come to terms with this new crisis in their life; and when they finally choose to share it with you for the first time, understand that all your loved one wants is for you to listen. You don’t need to offer solutions; you don’t need to search for ways to fix the problem at that point; and you ought not change the subject so you don’t have to hear what’s on their mind.
What your loved one wants/needs from you is a compassionate heart and an ear willing to listen. That’s it. Just listen. You don’t have to give advice; you don’t have to say anything profound or wise. All you have to do is listen. I know from a multitude of personal experiences how extremely disheartening it is when those you most rely upon cannot provide this. I also know from personal experience how profoundly comforting it is when loved ones do provide this.
Please, be sensitive to your loved one’s needs. Please, don’t be afraid to be silent. And to those suffering through difficult trials, please be patient with the shortcomings of others.
Sunday, July 14, 2013
Emotional Effects of Sickle Cell
Most of what I share is of a personal nature, but this is a bit more so. I feel as though, in some ways, I have suffered a lot of loss in my life: I’ve lost a great many close personal friendships to betrayal, disagreements, and other kinds of fallout; I’ve lost my wife and daughter in a divorce; and I lost a sister who now dwells with God. As a result of these many lost relationships, I have created an emotional barrier around myself; or in Star Trek terms, I raised shields.
I have come to realize that I haven’t allowed myself to make an emotional connection with anybody for a very long time. I am of course close to family and certain friends. However, with most people, there is a depth of emotion that I am not allowing myself to make with others in the way I once did.
I was speaking to a couple of my friends the other day about this--they are a married couple--and one of them made an observation that really stuck with me. Her comment was basically this: “All your life you have endured a great amount of physical pain as a result of living with Sickle Cell Anemia. As a coping strategy, you’ve learned how to disconnect yourself from your physical pain; you’ve had to in order to endure the pain. It’s not a stretch to think that you have applied that to other areas of your life.”
I’ve had several days to think about that, and as I’ve pondered her words, I realized that she is 100% correct. I have learned to cope with all sorts of pain--be it physical, mental, emotional, or spiritual—by disconnecting myself from it. I want to emotionally connect with people in a deeper way than what I have been allowing myself to do. Coming to this realization is a good first step.
One of my reasons for sharing this is help shed some light on an invisible complication of Sickle Cell. Living with this illness, we endure levels of pain that are unimaginable to most people. To endure that pain, and how it impacts our life, we all find our own ways of coping with it. The pain we endure not only impacts our physical body, but our state of mind as well. My point is, if I have learned to disconnect myself from my emotional pain the same way I do my physical pain, then I am betting there are others out there who have done, and are doing, the same thing. I hope by sharing this realization with you, it will cause you to look inside yourself and ask, “Am I also doing this?”
My second reason for sharing this is directed toward people who do not live with Sickle Cell. Awareness. Awareness. Awareness. People need to be aware that Sickle Cell doesn’t just affect our body, but also our emotions, our relationships, and how we interact with others. Sickle Cell Anemia impacts us psychologically more than we sometimes realizes; and I also think that often goes unaddressed and underestimated by others.
It’s important for us to take time to introspect, to ponder the ways our illness emotionally influences us in negative and positive ways. I personally am trying to look within myself and see how I can improve upon myself, upon the relationships I have, and improve upon the relationships I want to have with others. I encourage you, my readers, to do likewise.
I have come to realize that I haven’t allowed myself to make an emotional connection with anybody for a very long time. I am of course close to family and certain friends. However, with most people, there is a depth of emotion that I am not allowing myself to make with others in the way I once did.
I was speaking to a couple of my friends the other day about this--they are a married couple--and one of them made an observation that really stuck with me. Her comment was basically this: “All your life you have endured a great amount of physical pain as a result of living with Sickle Cell Anemia. As a coping strategy, you’ve learned how to disconnect yourself from your physical pain; you’ve had to in order to endure the pain. It’s not a stretch to think that you have applied that to other areas of your life.”
I’ve had several days to think about that, and as I’ve pondered her words, I realized that she is 100% correct. I have learned to cope with all sorts of pain--be it physical, mental, emotional, or spiritual—by disconnecting myself from it. I want to emotionally connect with people in a deeper way than what I have been allowing myself to do. Coming to this realization is a good first step.
One of my reasons for sharing this is help shed some light on an invisible complication of Sickle Cell. Living with this illness, we endure levels of pain that are unimaginable to most people. To endure that pain, and how it impacts our life, we all find our own ways of coping with it. The pain we endure not only impacts our physical body, but our state of mind as well. My point is, if I have learned to disconnect myself from my emotional pain the same way I do my physical pain, then I am betting there are others out there who have done, and are doing, the same thing. I hope by sharing this realization with you, it will cause you to look inside yourself and ask, “Am I also doing this?”
My second reason for sharing this is directed toward people who do not live with Sickle Cell. Awareness. Awareness. Awareness. People need to be aware that Sickle Cell doesn’t just affect our body, but also our emotions, our relationships, and how we interact with others. Sickle Cell Anemia impacts us psychologically more than we sometimes realizes; and I also think that often goes unaddressed and underestimated by others.
It’s important for us to take time to introspect, to ponder the ways our illness emotionally influences us in negative and positive ways. I personally am trying to look within myself and see how I can improve upon myself, upon the relationships I have, and improve upon the relationships I want to have with others. I encourage you, my readers, to do likewise.
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