Sleep and Sickle Cell

Sleep. We all need it. Getting the proper amount is vital to everyone’s health. When you live with Sickle Cell disease, however, getting the amount of sleep your body requires is especially important.
I remember when I was about seventeen years old and tired all the time. I went and saw my Sickle Cell doctor and told him how tired I always was. He asked how many hours of sleep I was getting. I told him eight hours every night. His reply was simple, “Get more sleep. Your body might need nine or ten hours of sleep.”

“Ten hours!” I exclaimed.

This seemed so excessive to me. Besides, two more hours of sleep meant two less hours of fun with my friends or doing what I wanted. But sure enough, ten hours of sleep is what my body needed, and has needed most of my life.

It can be a challenging thing to discipline yourself to make sure you get to bed when you need to so you get the sleep your body needs. Speaking personally, if I go more than two days with less than ten hours of beauty sleep, a pain crisis may be triggered; or it will take me several nights before I feel like I’m back to normal.

If your son or daughter has SCD, try not to label them as “lazy” if they need more sleep than what other kids might need. Truly their body has more going on inside than most, and they need that extra amount of sleep to stay healthy. Or if your child is fighting you about getting the rest they need, try to help them understand the benefits of getting the proper amount of sleep.

As I’ve said many times, living with Sickle Cell has many challenges. However, even though you have this obstacle, you can still live your life and do many great things with it. So give your body the hours it needs to rest, and enjoy your waking hours as much as possible.

Managing a Sickle Cell Pain Crisis

For the past fifteen days I have been in a sickle cell pain crisis. People who aren’t familiar with the illness ask, “What does a pain crisis feel like?” I usually reply by saying, “There are many degrees of severity of pain crises. To help convey this in terms people can understand, I compare a crisis to the weather. Sometimes it’s partly cloudy with a light mist of rain barely noticeable on your skin. Other times it’s a monsoon; there’s roaring thunder, steady lightening, 100mph winds, and a down pour of rain so heavy you can’t see in front of you. And there is everything in between.

“Light mist” pain crises feel like faint pain all over my body that causes me to feel achy, sluggish, and tired; kind of how you feel when the flu is coming on. When it’s a “monsoon” pain crisis, it feels like a million tiny needles are trying push their way through every inch of my body; and with every heart beat, those needles go in, and out, in and out; and with every breath, they go in and out, in and out. It hurts to move or even be touched in the slightest of ways.

So what helps? When I’m having a monsoon, or near that level of pain, I do the following things. 

1) Hydration. I increase my water intake. Hydration is really important in Sickle Cell Disease. So I set a timer every 30 minutes and drink half a glass of water (about 6oz). That way, by day’s end, I will have drunk well over a gallon of water.

2) Oxygen. When I sleep, my blood oxygen level drops to 70%. As a result, I use oxygen at night when I sleep. It’s an “oxygen concentrator;” a machine that converts the air in the room to the quality of pure oxygen. When I’m having a monsoon crisis, I use that oxygen 24/7, and it helps. Sickle cells block the flow of blood and oxygen, so having this additional oxygen is beneficial.

3) Be still. I stay home and do as little as possible. When it’s a monsoon pain crisis, it’s impossible to do anything anyway. When the crisis is less intense, I still know when I need to stay home and be quiet. Physical activity will only make the pain worse and risk hospitalization.

4) Pain medication. I might have to increase the amount of pain medication I normally take. Obviously I am careful not to overdose, but I know what I can take and when. Sometimes, when it’s monsoon season, home prescription pain medicine does very little to relieve the pain and the only thing I can do is wait out the storm.

5) Stay warm. Sickle Cell patients are highly temperature sensitive. Extreme temperatures—be it hot or cold—can trigger a pain crisis or make a current crisis worse. When in crisis, I wear warm clothing and often have an electric blanket on me. Staying warm during a crisis is very important. 

6) Meditation. I use various meditation techniques to slow my breathing and regulate my heart-rate. Getting excited, emotional, or panicking during a severe crisis will only make the pain worse. Staying as calm as possible is HUGELY important.

7) Know when it’s time to go to the hospital. From experience, I’ve learned when my body is telling me that it’s time to go to the hospital. In all honesty, I can’t remember the last time I had to go to the hospital because my pain was so out of control that I couldn’t manage it home. Nearly all of my hospitalizations over the past 20 years have been due to low hemoglobin levels or other types of illnesses. Most of the time, I just deal with the monsoon in the comfort of my own home and bed.

How Long Does a Pain Crisis Last? The short answer is, anywhere between less than a day to months. Monsoon level pain crises usually last one or a few days. “Light mist” crises...they can last days, weeks, or even in my most extreme case, a whole year.

My present crisis for example: on Saturday I felt fine. Sunday morning I woke up having a mild-moderate crisis, which progressed to a monsoon within a period of four hours. Monday and Tuesday it was a “light mist.” Wednesday it was one step below a monsoon. Thursday thru Friday it was a light mist again. Saturday was a step or two below monsoon. Sunday and Monday, back to a light mist.

I have said it before; the only thing predictable about Sickle Cell Disease is its unpredictability. We can be fine one minute, and in agony the next. The most important thing I can say to a friend or family member of a Sickle Cell patient is, be patient and be understanding. Those two things go along way at helping your loved one’s stress level.

Methadone & Morphine in SCD Pain Management

For nearly ten years now, the doctor's at my pain clinic have prescribed methadone and morphine to manage my pain. Both of these are controlled substances and are powerful pain killers. I know a lot of people are afraid of taking these medications. Drowsiness, nausea, constipation, and risk of addiction are some of their concerns.

For me, as long as I eat something when I take them, nausea isn't a problem. Because I've been on them so long, drowsiness also isn't an issue. Constipation, however, is an problem. If I don't take a laxative called senna every day, I will be constipated in no time. As for addiction, this is a risk with any prescription pain killer. To prevent addiction, one must be disciplined.

My prescriptions allow me to take 1-2 tablets of methadone every four hours, and 1-2 tablets of morphine every six hours. To prevent addiction and building up tolerance to these medications, I always ask myself the following questions BEFORE I take them:

1. Can I use meditation to reduce my pain? 
2. Do I really need to take these now, or can I wait another half your? or hour? or longer?
3. Do I need to take two tablets, or will one be enough? or maybe half?

By asking myself these questions, and through daily meditation, I have been able to avoid addiction and building up a tolerance to my pain killers. My doctors marvel that I've been so stable for so long with my medications. I know the reason is because I ask myself the above questions every single time I go to take my pain medication.

For me, these medications do what they are suppose to do, they manage my pain. 95% of the time, they do not cause nausea or drowsiness; I don't get any kind of buzz or high from them; and they don't cause me to zone out in any way. They simply reduce my pain. While on them I am able to drive, think, and behave normally. However, on occasion, because of increased pain and dosages, my pain killers do cause me to become drowsy and/or mentally cloudy. When this happens, I NEVER operate a vehicle.

Although my pain medications provide pain relief on a daily basis, there are negative side affects which I experience in varying degrees. For me, the biggest drawback is how it impacts me spiritually. Faith and spirituality are a huge part of my life. I often feel as though the combination of my pain and pain medication dull my spiritual sensitivity. It's hard to put into words exactly, but I constantly struggle to counter-balance my spirituality against the effects of my pain and medications.

I will also admit that the effects of my pain killers dulls my intellect in almost imperceptible ways. Sometimes I feel that my memory isn't where it should be; my thought processes aren't as quick as they could be; and my intellectual capacity isn't where I would like it to be. Whether this is a result of Sickle Cell Disease affecting my brain, a consequence of the medications, or a combination of both, I don't know. I personally feel it is a combination of both. Lets be honest, how can these drugs not have negative effects on the brain? And since sickle cells don't carry oxygen the way they should, how can that not affect brain function?

My purpose in writing this post to help inform anyone who is considering taking methadone and or morphine to manage their chronic pain. All I can do is share my experiences with these medications. The problem is, prescription pain killers and the pain from Sickle Cell Disease affects everybody differently. What works for one person may not work for another. For me, these pain medications work and allow me to function "normally" 95% of the time.

Anybody taking prescription pain killers should know, if you take them daily, your body will develop a dependence on them. Dependence is very different than addiction. For example, I once ran out of my pain medication; and because it was a holiday weekend, the pharmacy couldn't fill my prescription until Tuesday. After about twenty-four hours without my medication, my body began going through withdrawals. It wasn't a pleasant experience and I wound up having to go to the hospital. So, with regular use, physical dependence is unavoidable; addiction, however, IS avoidable with careful and responsible use.

In Denial of Your Sickle Cell?

When it comes to coming to terms with a chronic or terminal illness, I think we go through the five stages of grief the same way a person in mourning does. We experience anger, depression, bargaining, denial and eventually acceptance. Not everyone goes through these stages the same way or in the same order. For some, it may take years to pass through a single stage. Other people may, by choice, never move past one stage or another, like anger.

When it comes to living with a chronic illness, I feel the sooner we come to accept its reality, the better we will be. Not learning about our illness and how to best take care of our health is dangerous, and in truth it can be fatal.

Living with Sickle Cell is most certainly a challenge. It can be frustrating, maddening, angering, and depressing. It’s filled many days of pain, hospitalizations, and hours of doctor’s visits. It requires we manage our stress, eat healthy, keep ourselves well hydrated, and we always get the proper rest. It places many demands on us that most people can’t begin to understand.

Having said that, LIFE IS STILL WORTH LIVING. You can live well with Sickle Cell. I admit, I have days when I say, “Lord, just take me now.” But those days pass, laughter returns, and I live a fulfilling life. Though much of our illness is out of our control, much of it is in our control. It simply requires disciple and self-restraint.

If any of my readers out feel as though ignorance is bliss; that not learning about your illness is preferable to knowing, I invite you to change how you think. With knowledge comes power. The more you know about your illness, the more control you have in your life. 

For instance, I live with a lot daily pain from my back, hips and Sickle Cell crises. However, I’ve learned through study and experience what helps relieve that pain and what makes it worse. As a result, I have a certain measure of control over that pain. Of course there will always be times when the pain from a crisis is worse than other days; but with the knowledge I’ve gained over m life, I can cope with it and stay out of the hospital far more than I ever did as a teenager.

I pray each of my readers chooses to have faith in a power greater than you; chooses to be optimistic about your future; chooses to take care of your body, mind and spirit the best way you can; and chooses to believe you will live a long and happy life. 

Be at peace my friends.

Sincerely,   
   Jon

Symptoms of Low Hemoglobin in Sickle Cell

For the first time in three years and ten months, I was hospitalized last week. My hemoglobin dropped down to 4.1. It’s kind of my fault that my blood level dropped so low. I knew for a couple weeks that I needed to go get my hemoglobin tested, but because I couldn’t stand the thought of possibly being hospitalized, I procrastinated. I shouldn’t have procrastinated.

For me, there are five tell tale signs that my hemoglobin is really low.

1. Ringing in the Ears. When my hemoglobin is low, I have a faint and constant ringing in my ears. Most of the time I’m not aware of the ringing; it’s only when there isn’t much noise going on around me that I hear it. Sometimes it is loud enough to hear over the TV.
2. Hear My Heartbeat in My Ears. Any kind of physical activity—something as light as putting on my cloths—my cause me to hear my heartbeat in my ears. After a few minutes, the sound will go away; but sometimes it takes some time.
3. Increased Heartbeat. Like #2, physical activity as light as getting dressed can cause my heart to race. Sometimes it feels like my heart is going to pound out of my chest; but it’s usually that bad only if I’ve performed some sudden physical exertion.
4. Extreme Tiredness. Becoming tired easily is just part of having Sickle Cell Disease. But when my hemoglobin is low, I am super tired all the time. 
5. Mental Cloudiness. When my blood is low, I’m just not all there. Focusing, concentrating, and holding my attention on anything is difficult. I will also have a hard time collecting and expressing my thoughts.  

For all my readers who may be living with Sickle Cell Disease I say, don’t procrastinate listening to your instincts. You’ve been living with your illness your entire life. You know what symptoms mean what. You know when it’s time to have your blood checked. Listen to your body and life experience and don’t wait too long like I did. I will do my best to heed my own advice in the future.

Managing Sickle Cell Disease

Last week I had a couple of doctor appointments. Both doctors asked me a very similar question. "In the whole time I've known you, you've not been hospitalized with a pain crisis. How do you manage your illness so well?"

I first asked, "What do you mean when you say 'pain crisis'?"

"Pain that is so out of control that you have to be hospitalized."

This is what I told him. First, I'm not employed. So not having the emotional and physical stress of having to go to work every day plays a huge role in staying out of the hospital. I also do my best to avoid stress. Prolonged intense stress is a certain trigger for a pain crisis.

Secondly, I do my best to drink as close to a gallon of water each day as I possibly can. When I fail to drink enough water for prolonged periods of time, the result is fatigue and sickle cell pain.

Third, I make sure I eat healty and get the amount of sleep my body needs. For me, nine to ten hours is what my body needs. If I fail to get that for more than a few nights in a row, a pain crisis will descend upon me very quickly.

Fourth, I know my limits and don't push myself. When I was a teenager and in my early twenties, too often I burned the candle at both ends. I would over tax myself by playing and working too hard. The result was frequent hospitalizations. When I gained some wisdom, I learned to stay home when my body told me I needed to.

Fifth, meditation is a valuable and important tool for me. When I do have a severe pain crisis, controlling my breathing, heartrate, and stress play a big role in staying out of the hospital.

Sixth, having oxygen at home also helps. Like I wrote in "Oxygen Use and Sickle Cell," I have an oxygen consentrator. I primarily use oxygen at night when I sleep. But when I'm having a severe pain crisis, I will use it 24/7, often for several days. Having that added oxygen when in crisis helps. This, and all the other things I've mentioned, won't by themselves keep me out of the hospital. But together, every little bit helps.

I put a lot of mental energy into keeping myself healthy. Finding the necessary balance in life between doing the things we need, want, and have to do, can be a struggle. Even when we do find that balance, our illness is unpredictable and hospitalizations still happen; sometimes for no good reason at all.
I hope this information is helpful to somebody. Sickle Cell is a difficult illness to live with. But with discipline and wisdom, it can be managed fairly well. I pray you find that balance in your life.

No Remission for Sickle Cell

I had a conversation with a friend of mine not too long ago. Innocently and ignorantly, she suggested that I often have a reprieve from my illness. In her mind, if I wasn't having a lot of pain, my illness wasn't affecting my daily life. What she was unable to comprehend was, there is no reprieve from living Sickle Cell Disease; ever.

She was unable to understand that every choice I make, everything I do is influenced by my illness. Most people drink water because they are thirsty. I do my best to drink as close to a gallon of water each day of my life; not because I'm thirsty, but because it's what is necessary to prevent pain. Failing to do so on a regular basis can have painful and long lasting consequences.

If I fail to get the proper amount of sleep; if I fail to eat proper and balanced meals; if I fail to keep my stress under control; if I walk into a cold room or allow myself to become chilled...the consequences to any one an all of these can be painful and hurl me into the hospital.

I have to think about what the environment might be like everywhere I go and be prepared accordingly. Everything I do, I have to consider how that action may impact my health or cause me pain. Every single day of my life, I have to work at staying alive. There is no reprieve from that. It is a monkey that is always on my back.

It's important for friends and family to try to understand that your loved one's life is impacted, every moment of their life, by Sickle Cell. Just because they are out of the hospital or not in pain at the moment, it doesn't mean they are worry free. It takes constant vigilance for a Sickle Cell patient to stay out of the hospital and ward off a pain crisis. And even with that constant vigilance, the pain comes anyway, as do hospitalizations.

Friends and family of Sickle Cell patients must be understanding and forgiving people. And we as patients, must likewise be forgiving and understanding of others.

It's not my intention that this post come off as a rant. My intention is awareness. Family and friends must be aware of the weight that is always on our shoulders.

Avoiding Hospitalization from Sickle Cell Pain Crisis

For my few faithful followers, I apologize that I’ve been sporadic in posting lately. For the past two weeks I’ve been really sick. Thankfully, through God’s grace, I managed to stay out of the hospital.

Recently, a doctor asked me how I managed my illness so well. The question was prompted by the fact that it’s been two years and ten months since I was last hospitalized; before that it was six years.

Last week I was running a fever, having a severe pain crisis, and fighting the flu. There were moments when I was certain I was going to have to go to the ER. I’ve come to loath the very idea of very hospitalized, so I did all I knew to do, to stay out.

I frequently monitored my temperature and took Tylenol to keep it down. I also kept blankets and as many cloths off of me as possible. To ensure that I didn’t become dehydrated, I made sure I drank half a glass of water every half hour. In addition, I used my oxygen concentrator 24/7 through the worst of it. All these things, and a lot of prayer, worked together to keep out of the ER.

Like I’ve said in other posts, knowing your body is of the utmost importance. Know what you can do at home to take care of yourself, and have the discipline to do it. But know also, when not to wait too long. Once, when I was eighteen, I caught the flu and waited too long to go to the hospital. My hemoglobin dropped down to 2.0. It nearly cost me my life.

This time around, though I did all I knew to do to stay out of the hospital, I was right on the line there for a while. If I had gone another day feeling as poorly as I did for the first three, I probably would’ve had to be hospitalized. Thankfully, I began to improve.

I hope each of you manage your illness to the best of your ability. Until next time.

Cold Weather and Sickle Cell

It’s impossible for anyone other than Sickle Cell patients to understand how powerfully temperature, and weather, impacts our life. I cannot number the times when I’ve been entirely pain free, and either walked into a cold room or out into cold weather, and instantly had a wave of needling pain wash over my entire body. [And I’m not talking about the kind of pain that comes from your parents needling you about cleaning your room...I mean the pain of a million needles being jabbed into every square inch of your body.]

Then there have been those times when I froze in an air conditioned room for 30-60 minutes; and that short time of temperature discomfort caused a pain crisis that lasted not hours or days, but weeks. Yes, being cold for thirty minutes can cause physical pain that lasts weeks!

Some people say, “Just cover yourself up with a blanket.” But those people are ignorant of the fact that, though I may be moderately warm underneath a blanket or coat, the cold air surrounding me can still trigger horrendous pain. To ward off a cold triggered pain crisis, not only do I personally have to be warm, but the air around me has to also be warm. Obviously, we can’t always control what the temperature around us is set at. So the best we can do is think ahead about where we are going and try to anticipate what the temperature may be like there.

When I go to the doctor, I always dress warm and take a coat, even if it’s 100º outside. The same is true for the movies, church, and anywhere I go where I cannot control the temperature.

At church, some people loving tease me when they see my with my Sunday blanket during the summer. They might say, “Jon, is the air conditioner making you cold or can you just not leave your blanky at home?” Fortunately my church family know what my health issues are and do not judge. But to some degree, taking care of yourself means not caring what people think.

¶ PARENTS: On behalf of your children, please, please, be both tolerate and understanding of how important the temperature is to your child’s health. Also, help your son or daughter learn what she/he must do to stay warm, and teach them how important it is to do so.

Something that might help offset the cost of running the air or heater is something called, a “Medical Baseline Allowance Application.” This is a form you submit to you electric company which provides you with a discount on your electric bill. It can save you some money on the electric bill and is something every Sickle Cell household should get.

This form has to be filled out both by the individual and by your doctor. It basically states, due to medically issues, the temperature in your home has to be within a certain range to stay. The form may also indicate that you have medical equipment that needs to be running, like an oxygen concentrator. The application form can be found on the Southern California Edison website. I’m fairly certain other electric companies off similar savings plans.

¶ PATIENTS: I encourage to have the disciple to always be prepared. If you’re too hot, it’s much easier to take layers of clothing off than it is put layers of clothing on that you don’t have. I think one of the reasons why I was hospitalized so much as a child and teenager was because it took me a long time to learn simple lessons.

Many of my hospitalizations as a kid were the result of getting too cold or too hot. With age and wisdom, I learned to manage my illness better. As a result, I have only been hospitalized nine times in the past 20 years! The twenty years before that, I was admitted one hundred and seven times. That’s a HUGE difference. I work hard at staying out of the hospital, and it has paid off.

¶ So in closing I say:
•    Wear thermal underwear; long sleeved shirts; sweaters; coats; jackets; hats; and gloves. No, you don’t have to wear all of these at the same time; unless you live in the Arctic.
•    Try not to feel embarrassed about keeping yourself warm.
•    Whatever you do, don’t join the Polar Bear Club (you know, those crazy people who jump in rivers of ice just for the fun of it).

Until next time my friends...may warmth be with you.

Don't Panic During a Sickle Cell Pain Crisis

Not long ago I was telling a friend that I once had a pain crisis that lasted over a year; it was a constant, mild pain that was present all day every day. She asked me, “Do you ever become panicky and feel as though the pain is never going to end?”

My reply was, “No. I don’t allow myself to become panicky. I learned as a boy that panic only makes the pain worse.”

“But a year of pain,” she exclaimed. “Surly you felt like it would never end?”
 “It has to end some time,” I said. “It can’t go on forever.”

¶ In section 06) Controlling Your Pain (see the post titled: Preparation – Be Calm and Breathe Normally) I spoke about how important it is to control your breathing and remain calm during a pain crisis. Like all SC patients who endure long periods of chronic pain, I know how easy it can be to feel: overwhelmed by the pain; a maddening frustration over its prolonged presence; emotionally and physically drained from combating it; and exceptionally irritable.

As patients living with this illness, I don’t think we are always aware of the emotional toll our pain takes on us and often times, those around us. When I was a kid my family found this button-pin that read “leave me alone, I’m having a CRISIS!” I thought it was funny. It wasn’t until I was an adult that I realized that I really was less patient and more irritable during pain crises.

How we physically feel is very closely tied to how we emotionally behave. I mean honestly, who isn’t Mr. or Ms. Crabbypants when their finger is stuck in a door jam? Pain and laughter don’t usually hold hands and go skipping through a field of daisies together.

I think what I’m getting at—and please forgive my rambling—is this:

•    Panicking over your pain will only make your pain worse.
•    Learn to recognize that you may be a bit crabby when in crisis.
•    While a certain level of irritability when in crisis is to be expected, try to use restraint. Just because you are in pain doesn’t mean everybody around you also has to also suffer.

Like so many patients, I know what it’s like to feel overwhelmed from the pain and complications of our illness. But we don’t have the luxury of giving into those feelings. Bottling in that stress will only worsen your health. Talk with friends and family about how your feel; find healthy ways to vent your frustrations (i.e. art, music, writing, etc.); perhaps talk with a counselor; treat yourself to something now and then; redirect that energy into positive things.

Though sometimes it feels as though you no longer posses the strength to endure the trials your health throws at you, I assure you that you do. “With man this is impossible, but with God, all things are possible.”

Angry with God About Sickle Cell?

A friend of mine recently asked me, "Don't you ever feel angry at God for all the things you have to endure?" My answer was, "No." Though this friend and I are of the same faith, this amazed her. For me personally, getting angry with God has never made any sense.

Just as we will return to live with God after this life is over, I believe that we all lived with God as His spirit children before we came to live on earth as mortal beings. I also believe, when we lived with Him as spirits, that we each chose to be born on earth; that we understood the challenges we would face while on earth; and we chose to accept those challenges.

I feel these beliefs are the reasons why I have made the choice to never be angry with God. Yes, there have been times when I wondered why this is happening, times when I've felt lost and confused, but never angry at Father. I believe I chose this life and accepted the trials and blessings that came with it; how could I possibly be angry with God for that?

Whether or not a person is of my faith, I know not everyone has this same outlook. It can be an easy temptation to exclaim to the heavens with clinched fists, "Why are You doing this to me?" As hard as it is, we should train ourselves to instead ask, "What is it that You want me to learn from this?" Or, "How can I be a better person from having had this experience?"

One of my favorite Bible stories is found in John 9:1-3. It reads: "And as Jesus passed by, he saw a man which was blind from his birth. And his disciples asked him, saying, Master, who did sin, this man, or his parents, that he was born blind? Jesus answered, Neither hath this man sinned, nor his parents: but that the works of God should be made manifest in him."

There are many reasons I like these verses. One reason is that it can be a source of relief to parents. Sometimes parents feel a terrible guilt over their child's disability. This verse tells me that--unless it was through gross negligence, such as drug or alcohol abuse--a parent’s sins or actions did not cause their child to be born with a disability; as sad as it is, some people believe this. They are idiots; don’t listen to them.

The other reason I like these verses is found in the last verse: "...but that the works of God should be made manifest in him." We can't see God's purpose in all things. But one thing I am certain of, you and I were born on this earth for a reason. Sometimes, quite often in fact, the trials that you and I endure from having Sickle Cell Disease is a source of inspiration to other people.

I don't say this boast, but rather to acknowledge God's purpose. I know for certain that my life has touched others. The things I endure, how I endure it, and the way I've chosen to live my life has been an inspiration to many people. I think this is what the last part of that verse means. Your life can motivate people to do and be better.

I have survived many things that should have killed me and have been healed from many afflictions. The miracles in my life, and yours as well, are a manifestation of God's love and power. Though it may not bring much comfort when we are having a horrid pain crisis, the truth still remains that others see our strength and are made better by it.

Living with Sickle Cell Anemia, you and I will face a great number of trials. These are not punishments from our loving Heavenly Father, but are opportunities for us, and others, to emotionally and spiritually grow closer to Him. Yes, pain will come. Yes, complications will arise. But it's how you and I choose to weather these storms that will define who we are as a son or daughter of God. They will also help inspire others.

Don’t allow the pain in your life to put a wedge between you and God. Instead, allow that pain to be an instrument to build an unbreakable bond with your Creator. It will enrich your life, and the lives of others, beyond what words can convey.

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.

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

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.

Trials and Blessings of Sickle Cell

I have to admit I was pretty depressed when I wrote the post “Not Cleared for Surgery." Nearly two weeks have passed since then and the black fog of depression has lifted; though there still is some haze.

Previously I have written how important it is to remember that “Somebody Has it Worse Than You.” No matter how bad things are, this is always true. And I have to admit, it’s a concept that I have not applied as I should have over the past few weeks.

On the news for the past week or two there has been a story about a ten year old girl who needed a new set of lungs. Unless she received those lungs within ten days, she was going to die. This poor girl was stuck in a hospital for, I don't know how long, relying upon a machine to help her breathe. Thankfully, with only a few days left to live, she finally received those lungs and went into surgery on Wednesday. Listening to her story on Wednesday really hit me on at the core.

I’ve been so depressed over the idea of spending the rest of my life in a wheelchair. My thought was, “I’m thirty-nine years old for crying out loud!” But I finally woke up and realized: my mind and intellect are in tact; I can read; I can write; I can draw; I can drive; and I can still do many things. I’m not stuck in a hospital bed; I don’t have to have a machine help me breathe; I’m not a child fighting for my life praying that somebody dies so I can have their lungs, and most likely feeling bad about that; there are many, many, many things that I’m not battling with. What right do I have feeling sorry for myself? Somebody, many-bodies, have it far worse than I do.

My objective here is to help readers of this post remember what I finally did, that things could be worse. Though the trials we are facing today seem, and in truth are emotionally taxing and a trial of faith, there is still much to be thankful for. Rather than thinking on all the things you or I cannot do, embrace those things you and I still CAN do; and there are many.

There is a facebook page entitled Sickle Cell Warrior, As survivors of Sickle Cell Anemia, there is much we battle in life, thus making us warriors in our own right. My brothers and sisters, as warriors we must always keep the shield of faith close to our hearts. I pray each of you find the courage and strength to always count your blessings, trust in God, and endure your trials well.

The Three F's of Coping with Sickle Cell - Faith

 When people ask, "how do you cope with it all," I tell them faith, along with my family and friends, is what gets me through it all. In the post entitled, Spiritual Health, I spoke about the need to have spirituality in your life. For me, my faith is what gets me through all the unpleasant things that Sickle Cell throws my way.

On the facebook page,  Sickle Warriors, I read that a young man with Sickle Cell recently took his own life because he was tired of the difficulties the illness brought into his life. I feel for him and his family. On more than one occasion, despair nearly drove me to take such actions.

In the post entitled, Depression, I spoke briefly about my struggles in that area. There were many years in my life when suicide occupied my thoughts on a daily basis. The cold reality was, had it not been for my faith and religious beliefs, I would have taken my own life. Once I acknowledged I needed help and received it, those dark thoughts left me and have been a thing of the past for a long time now. Thank goodness.

As Sickle Cell patients, we struggle with so much; it's natural for our minds and spirits to fall into dark places sometimes; as does everybody at times. To counterbalance that darkness, there must be a greater light in your life. That light is God.

Though I am very devoted to faith, it's not my purpose here to promote any particular religion. My purpose is to encourage you to find your own faith. I personally cannot imagine enduring what we do without having God a part of our life.

As everybody whose endured a pain crisis knows, there are times when the pain is so high that one minute feels like an hour, and a day of it feels like ten. When those agonizing minutes come, the light of Christ and God's love is the lifeline that will pull me through the sea of agony. Without it, I would surely drown.

The Lord has provided more miracles in my life than I can count. At times I've been pulled back from the brink of death; at times I've had agonizing pain entirely removed; other times, most of the time unfortunately, it's my lot to endure the pain. Whether God lessons my discomfort or not, He always sees me through it with the comfort of His Spirit; as He can do for you.

Faith doesn't mean we are going to be protected from hardship; rather, it gives us the strength to endure it. If faith and spirituality are not yet a part of your life, I beg you to seek it out. If faith is a part of your life--whether it's Muslim based, Buddhism, Hinduism, Judaism, or Christianity--always be vigilant to cultivate it; do things that will help the light of your spirituality burn brighter. For that light will see you through the darkest of days.

The Three F's of Coping with Sickle Cell - Family

When I talk with people about the things I endure, the question I'm frequently asked is, "how do you cope with it all?" For one thing, I couldn't do it without my family. I feel SO blessed to be a Monk; and I don't mean the bald headed kind who wear robes all the time; though my oldest brother is bald now.

Everybody's family unit is organized differently. Many live in a single parent home; some have half siblings; others have step-parents and siblings; some live with relatives or foster parents; and others have people of non-relation whom they call family. There are many people who feel that blood relation is the only kind of family that matters. Being adopted, I know that's bull. In my mind, time together and love is  what makes a family.

I've never had a desire to seek out my biological parents. I've always known who my mom and dad were. They are: the only parents I've ever known; they are the people who have loved me all my life; they are the people who agonized with me through every pain crisis and all 116 hospitalizations.

I have so many memories as a youth of being in the hospital. Too often, I saw other children who seldom had anybody visit or stay with them in the hospital; sometimes for days at time. I felt bad for them. There I had either my mom, dad, or some other family member visit me every day; but next to me there was a child who did not have that. It broke my heart.

My point in writing about this is...Sickle Cell is a difficult challenge to live with. For any parents or family member reading this post, your child needs your support. No matter the age, a hospital bed is a lonely place to be. Sickle Cell itself can be a lonely disease. Family and friends must rally around the patient.

For any teen reading this post, allow your family to be there for you. It's not uncommon for many teenagers with Sickle Cell to wonder if they should tell certain family members, who may not know, that they have Sickle Cell. As I've said in previous posts, you need your family's support. Be open with your family. Trust them and rely upon them.

For any reader whose life circumstance is such that family is in short supply, remember what I said; blood relation doesn't necessarily make a family. Lean on the love others have to give you. Whether your "family" is a neighbor, a minister, a teacher, or trusted friend, allow them to be there for you. And to those ministers, teachers, and neighbors, please, please understand how great a challenge living with Sickle Cell is for your loved one, and offer as much support as you have to give. It will make all the difference in their life.