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.
Friday, September 27, 2013
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.
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