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.

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

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.

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.

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.”

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.

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.

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.

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.

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.

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.

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.

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.

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.

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?

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.

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.

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.

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.

40th Birthday with Sickle Cell

The post for the week is short and sweet; I am 40 years old! That's crazy; but in an entirely wonderful way. What a blessing it is to be alive!