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.
Friday, October 25, 2013
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
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