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.

Mortality and Sickle Cell Disease

On the Sickle Cell Warrior Facebook page, somebody recently asked, "How do you hang on to hope and faith when we are constantly reminded of our own mortality?" I thought it was a good question and felt like talking about it.

People who are healthy from birth generally have a sense of invulnerability; they tend to feel they will live forever and nothing can harm them. Often, it's not until later in life--40's or 50's--that they come to the realization that they can be hurt, they are in fact mortal, and will one day die.

When you are live with Sickle Cell Disease the opposite is true. Between the constant hospitalizations, chronic pain, and all the complications that come with this illness, you learn at a young age that you can be hurt and you are very much mortal. It can affect one's psyche in deep and profound ways.

I know in my life I have, at times, felt:

• Cheated out of a "normal" life; 

• As though I am missing out on fun and good times with friends;

• Like my life is going to end much sooner than my friends;

• Depressed about my circumstance;

• Angry about my limitations;

• Helpless and a slave to my body;

• Hopeless that things will ever improve;

There were times in my life when many of these fears and frustrations crippled me from having hope and ambition. Depression and suicidal thoughts plagued my life through most of my 20's. Antidepressants have, at times, played an important role in my mental health. But mostly, the source of my greatest hope, is and has always been my faith.

Aside from my religious convictions, there is much I do to combat the negative thoughts and feelings that can easily crop up. For me, keeping my mind busy is of HUGE importance to my mental, physical, and spiritual health.

• Finding new hobbies;

• Serving in my church and helping other people;

• Completing and starting new projects;

• Reading and writing;

• Setting goals;

• Meditation;

• Discovering new ways to challenge and expand my intellect;

• Finding wholesome activities that allow me to grow as a person;

These are the many of the things that help me counterbalance the negativity my illness brings into my life. My faith in Jesus Christ and other religious views are what infuse me with hope. For me, faith in a Higher Power is only part of the recipe. I also have to have good things to occupy my time and good people to help add fulfillment to my life. 

Whether you live with an illness or are healthy, nobody knows how much time they have on this earth. So do your best see the beauty in your life. Gravitate towards good things, and good things will happen.

Living a happy life with Sickle Cell Disease can be a challenge, but it is achievable. 

Healing Energies and Sickle Cell Disease

For the past two months I have been feeling more awake, alert, physically energetic, and overall better than I have in more than three years. I feel as though a fog has been lifted from my mind and a weight lifted off my body. I want to share with you what I’ve been doing differently, so please, keep an open mind.

Though modern medicine has kept me alive for 42 years, I do believe there is value in: acupuncture, acupressure, Eastern medicine, healing energy, and other alternative medicines. Meditation, for example, is a powerful tool in my life that allows me to manage my pain and reduce my stress. About two months ago, I read the follow books:·    

•  “Chakras: Awaken Your Internal Energy” by Veronica Baruwal
• “5-Minute Chi Boost – Pressure Points for Reviving Life Energy, Avoiding Pain and Healing Fast” by Sifu William Lee.

The first book talks about the seven energy points in your body called chakras. Among other things, the author details where these chakras are located and how to stimulate them through meditation. The second book is basically an eighty-page instruction manual on how to stimulate various pressure points on your body. The author describes how to slap and/or tap various pressure points, thus allowing your body’s energy (Chi) to flow properly. In both these practices, it’s believed that proper energy flow can have positive and profound affects on the mind and body.

After reading these books, I decided I had nothing to loose by trying it. So I began meditating for about fifteen minutes each morning in the manner suggested in “Chakras: Awaken Your Internal Energy.” After meditating, I took the necessary time to perform the acupressure routine described in “5-Minute Chi Boost.”

Following this routine for about two weeks, I woke up one morning feeling GREAT! After a couple days of feeling amazing, I began asking myself, “What am I doing differently?” Apparently I’m not too bright because it took me awhile to remember.

It has now been almost two months since I began the daily routine I described above. I do my best to not miss a day; and when I do skip a couple of days, I begin feeling poorly again. I have been, and continue to be, amazed at the monumental difference in how I’ve feeling by spending 15-20 minutes a day doing these simple practices. It is nice to feel like myself again. It’s nice to be energetic and have a clear mind.

I know some people will probably think what I’m experiencing is a “placebo affect” or the power of suggestion. If that’s the case, so be it. But I truly believe these simple exercises are what has made such a profound difference in how I feel.

My purpose in sharing this is to help other people open up to the possibility. If chakra meditation and acupressure stimulation has worked to improved my health, maybe it can work for you too. When you live with a chronic illness, I feel it's important to be open to other methods and remedies. After all, what harm is there is trying a new practice to see if it helps improve your health?

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.

"Vein Finder," a Blessing for Sickle Cell

There is a wonderful piece of technology out there called a Vein Finder (though there are other like products with different names that do the same thing). It’s a device phlebotomists use to help them...wait for it...FIND OUR VEINS!

Like most Sickle Cell patients, nearly all my veins are used up. I have only a few areas in my hands where an IV can be put in; and when I’m receiving blood, it’s even more difficult to find a large enough vein for the blood.

During my 2015 hospitalization, the first vein used to receive two units of blood, worked just fine. But when it was time to give me a third unit, my vein went bad five minutes into the transfusion. So the third bag of blood was hanging there with an invisible ticking clock next to it. As I’m sure you know, the blood has to be used within a certain period of time before it goes bad.

So, frantic to get this last unit of blood in me before it’s too late, one nurse tried unsuccessfully to put a new IV in me. Looking all over for another spot, she called for another nurse, and another. Thankfully they hadn’t yet stuck me a second time, but were frustrated in their failed efforts to find a proper sized vein. Finally, one of them asked, “Where’s the Vein Finder?”

“What’s a Vein Finder,” I asked.

“I know where it is,” another nurse replied. “I’ll run and get it.”

Having no idea what they were talking about, I watched and listened with confusioned intrigue. A little bit latter the nurse hastily returned with this wheeled pole that had an articulating arm on it with a square device on the end of the arm.

“So what is this thing?” I asked.

“It’s awesome,” my nurse replied enthusiastically. “Just watch.”

So they plugged in the “Vein Finder”, wheeled it beside my bed, adjusted the arm, and angled the device over my hand—where the last of my good veins are located. They then flipped on the device, which projected a rectangular green—laser-like—light onto my hand. Then, like some kind of futuristic holographic map, every twist and turn of every vein, artery and capillary in my hand was instantly revealed. 

Within seconds, all the nurses simultaneously exclaimed, “There it is!” and pointed to the perfect vein. There mine as well have been a green neon arrow pointing to my vein with a sign, “Stick Needle Here!”

Without any effort, delay or mishap, the nurse was able to put the right sized IV in my vein. Within minutes, my third unit of blood was flowing smoothly into my hand. It was like magic. I’ve never been so happy to receive an IV. It was/is an amazing piece of technology that kept me from being needlessly stuck over and over and over again in search of the ever elusive “perfect vein.”

I don’t know how widely available these devices are. During my most recent hospitalization—when the nurse was having problems finding a vein on me—I asked if a Vein Finder was available; much to my sorrow, there wasn’t. Hopefully the day will come when every phlebotomist, ER, and hospital nurses’ station will have these wonderfully magical devices at the ready.

I feel bad it’s taken me so long to write about this experience. Every person who is frequently hospitalized needs to be informed about this device. If I could afford to buy a portable Vein Finder, I would take it with me to every doctor’s appointment and ER visit. Since that option is available to very few people, at least we can be armed with the knowledge of its existence. I hope this helps. 

The image below was taken off the internet. What is shown is very similar to what my hand looked like when the Vein Finder was used on me. Except, my veins aren't even close to being as straight as this person's.

Sickle Cell: Bone Marrow Biopsy

About a month ago I was hospitalized with a hemoglobin level of 4.2. I was admitted for four days and given two units of blood. They were watching to see what my hemoglobin was going to do; they were concerned about my bone marrow not producing enough red blood cells to keep up.

My hematologist ordered a bone marrow biopsy, which I had done yesterday. I was pretty anxious about the procedure. I had mine done as out patient. I went in for a blood test at 9:00am then checked in for the procedure that was scheduled for 11:00am. 

Normally they have you lay on your stomach, but with both my hips in the state they are in from severe avascular necrosis (AVN), I can’t lay flat like that; so they had me lay on the side that was most comfortable for me; which is my left side. They then began the procedure on my right hip, just above my buttocks. They administered a sedative and pain medicine through my IV before they began. Honestly, I wish they had given me the sedative an hour before, but oh well.

They then numbed the area with lidocaine, and also numbed the bone. That part wasn’t too bad. I felt the pressure of them working. They then told me they were going to extract the bone marrow and not to move. When the extracted the marrow, that HURT, a lot. And they had to do it twice. They gave me more pain medication and also took a sample of the bone, which I felt, but not as badly as the extraction; it was just uncomfortable. Not long after, they were all done. I think from the time they actually began the biopsy to the time they finished, it probably only took ten minutes or less. Preparing me for the procedure, the procedure, and then dressing the wound, in all it may have taken a half hour.

The pain from the extraction began to subside pretty quickly. They had me lay on my back with a towel behind me on the dressing to add pressure on the wound. They kept me for observation for about another half hour. I had a family member with me who drove me home. The drive home was painful because the lidocaine was wearing off and I felt every bump in the road. I live almost an hour away from my doctors and hospital, so it was a long painful ride home.

By the time I arrived home I was very tired. Between the sedative and pain meds they gave me, accompanied with the pain, I was pretty exhausted. Today, I’m still a little tired and a bit sore, but not too bad. I was instructed to keep the wound dry and clean for 24 hours. After 24 hours I could shower, but no baths for a few days. There is danger of infection; after all, they did dig into and remove part of the bone in my hip.

It will take 2 days to get some results of the test and two weeks to get other results. So I will see my doctor again in a couple weeks. Thankfully, when my hemoglobin was tested yesterday it was 8.6. So I’m praying that’s a good sign that my bone marrow is working as it should.

So I’m sharing my experience so others can know what to expect. I think a lot of my anxiety came because I didn’t know what to expect. I was told by the doctors performing the biopsy that most people don’t feel the pain I did from the extraction. The severe AVN of my hips probably contributed to the pain. I don’t know if I believe them. A few days before I had the biopsy, I watched one performed by a doctor on YouTube; which probably wasn’t the best idea. But the doctor in the video said the extraction is the part that “HURTS.” The doctor in the video was correct.

Though I don’t want to have to repeat the procedure anytime soon, I know what to expect next time; which hopefully will reduce my anxiety. If you, or someone you love, has to have a bone marrow biopsy, know the extraction of the marrow is the worst part. The upside is, the pain from the extraction begins to subside pretty quickly and the whole process doesn’t take that long. 

I am going to do my best to take up writing regular posts again. Until next time.... 

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

Yet Another Sickle Cell Foot Ulcer

Well, for the past thirty-one days, I’ve been struggling with a new foot ulcer. This one has been very strange. For the past several months I’ve had what I can only describe as minor cracks on the top of my left foot. They have been located on my left foot in between my big toe and index toe, and below the knuckle of my index toe. For the past several months I’ve used my red-light daily on it along with Viniferamine Skin Renewal Cream. 

The cracks were small scabs that looked like tiny black threads in my skin. They didn’t grow, deepen, or cause any pain. They were just there. My wound doctor suggested the above-mentioned cream to help keep my skin healthy. When I began using the cream and the red light on them, they appeared to start healing. Some of the scabs even began to fall off at the end of April and I was no longer concerned about them breaking open into wounds.

Then, about a week after my hospitalization, and for no apparent reason, the following happened. I woke up one day, May 1st I think, with my left foot in HORRIFIC pain and minor swelling. The pain was so intense that, when I needed to stand, I could only put weight on the heel of my foot. For two days I was in terrible pain.

On day three, the spot where the cracks were in between my toes, they broke open into a foot ulcer. At first it was the size of the head of a Q-tip. However, like most foot ulcers have done in the past, it continued to expand. It seems like, if there is any damaged or weakened skin near a new break out, the wound will engulf that area and beyond. In a week’s time I went from having no wound, to one that was about three inches long and two inches wide. It’s across the top of my foot and up long the inside of my big toe.

In the event of wound outbreaks like this, my wound doctor has been kind enough to leave me with refills of the antibiotic he prescribes. When the wound broke open on day three, I began taking the antibiotic and made an appointment to see my doctor. Thankfully, after the third day, the horrendous pain I first experienced began to diminish.

Due to the wound’s location, I’ve not been able to use Manuka Honey, which is what I prefer using; my wounds appear to heal much faster when I use Manuka Honey. So instead, I began using Silversulfadizine Cream for the first two weeks of my wound care. I also have been using my red light on and around the wounds; I use the red light about five times a day. It really helps with the pain.

After about a week, the wound stopped growing. Around week two, I stopped taking my antibiotic and saw my doctor. He advised me to start using Santyl on the wound to help remove the slough and promote healing. He also said I was right to take the antibotic when I did. 

 I followed my doctor’s advice and used Santyl. After about a week and a half, I could tell I needed to go back to using the Silversulfadizine Cream. Four years of daily cleaning and managing these horrid wounds, I have developed the ability to know what to use on my wounds and when. This wound is the eighteenth wound I’ve had in five years. Before that, I never had a single one.

Today is a month since this new wound began giving me problems. I feel like the foot ulcer is looking good and already showing signs of improving. Some areas have healed. As for the bulk of the wound, the build up of slough is thinning more and more with each passing day. I’m beginning to see spots of red-flesh through much of the slough; which is of course good progress.

I feel my red light is helping reduce the pain and improve healing time. In the past, my foot ulcer would grow, expand, and remain the same for two months before I saw any healing. Here I am at a month and I’m already seeing signs of healing. That is remarkable. Also, the pain involved in cleaning the wound is not as high as in the past. I also attribute this to the red light. 

This new wound has left me a bit discouraged. I had hoped the red light would totally prevent new wounds from forming on my feet. Sadly, this has not been the case. However, it has helped prevent some wounds from forming; it has/does help with the pain; and improve healing time and have other benefits. So that’s something.

The battle wages on.

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.

Red Light: Less Pain from SC Foot Ulcers

So here is a bit of irony for you. Hours after I made my last post stating that I was 90% certain that the spots on my foot would “NOT” become open wounds, they broke open and became open wounds.

Normally once a wound breaks open, the first four weeks—or more—are weeks where the wound continues to grow larger and larger. Then there’s a few weeks or month of it staying the same. Then there is a month or more of healing. Here is the amazing part of this story. This wound is doing something no other wound has done before; it’s already healing!

Three weeks ago, February 17th, 2015, the would broke open. Like I wrote in my previous post, I’ve continued to use my red light on my wound about four or five times a day for at least five minutes each time. I also treated my wound with Manuka honey twice a day.

The first two weeks of my new wound, the ulcer grew slightly larger. Normally they grow significantly larger and are exceptionally painful. With this wound, there has been very little to no pain. That itself is amazing.

Four days ago I saw my wound doctor. He instructed me to stop using the honey and use Santyl instead. [Santyl helps debris the wound from slough.] I followed his instruction like the good patient I am. Three days ago, I noticed my wound was showing signs of HEALING! Today, during my morning cleaning, I noticed the wound showed significant signs of healing. It’s beginning to close and new skin growth is readily apparent.

Never, in the four years I’ve been constantly dealing with these Sickle Cell foot ulcers, has a wound behaved like this one. 1) There has been little to no pain; 2) Never has a wound stopped expanding in a period of two weeks; and 3) Never has a wound begun to heal and begun close three weeks after it broke open.

I am entirely, thoroughly, completely, and utterly amazed by what is taking place. If the healing continues to progress as it has, then my wound may be healed in a week; two weeks at most. It’s flabbergasting.

I am totally convinced that the combined benefits of the Manuka honey and the red light treatments have GREATLY accelerated the healing time on my newest wound. I don’t know what else could explain it. In case you couldn’t tell from my post, I’m super excited by this development. I may have finally found something that not only helps prevent new wounds from forming, but also accelerates healing time on any new ulcer that do form.

I’m quite certain the red light has already helped prevent two other wounds forming. I had suspicious discoloration on two places on my foot. But by using the red light on those spots as frequently as I have, it halted the progress of potential wounds.

I know the red light I bought was kind of pricey; but for me, it has been well worth every penny. If you suffer from chronic Sickle Cell leg and/or foot ulcers, I highly recommend you look into investing in a red light. I will keep you updated on my continued experiences with this treatment and technology.

I’M SO EXCITED!!!

Sickle Cell Wound Prevention with Red Light

I haven’t written about my red light in a while. I presently still have one wound on the outside of my right foot. I clean it twice a day and use the Red Light on it for perhaps two to five minutes. Obviously I don’t put the light directly on the wound; I hold the tip of the light about an inch above it. Though I have not noticed an increased rate of healing on the wound from using the light, I have continued to experience pain relief from its use.

Just as I hoped, the red light seems to be preventing new wounds from forming. Several months ago, a tiny dot of a scab appeared on the top of my foot. It remained there for probably three months. That was three months of wondering and worrying if it was going to turn into an ulcer. Eventually, the scab fell off; thankfully it never became a wound. I’ve had this happen several times; where tiny scabs formed and remained for months never becoming an ulcer.

Since I purchased my red light, another tiny scab appeared on my foot. In addition to using the light on the wound I presently have, I shone the light on the scab, and did so twice a day. After about two weeks, the scab came off. This has never before happened that quickly.

About three weeks ago, I found two spots side by side on the heel of my right foot that gave me serious concerns. I had been carefully inspecting my feet for suspicious spots, but these two somehow slipped past my noticing. This is because, as a result of the condition of my hips, they are in a difficult spot for me to see.

Normally, I would be 100% certain these spots would become a wound, and I would be right; because I’m always right, naturally--I’m joking; I’m not always right. As soon as I discovered these spots, I began using my red light on them 2-3 times a day for at least five minutes each. After about two weeks, I became 90% certain that both spots will NOT become open wounds. 

On the third week, the area around these suspicious spots began to drain, much like a water blister would. Needless to say, I became very concerned, again. Not wanting it to turn into another wound, I began treating it with my light every two hours for five minutes. That was about a week ago. Though there is still some pain and a minute about of drainage, based on how it's looking, I feel confidant it will not turn into an ulcer.

I continue to be very hopeful and optimistic that I have found something that may help prevent new wounds from forming on my foot. I have no doubt my foot ulcers will continue to be a complication for me. But maybe, just must maybe, the frequency will be reduced. So far, it has worked to do just that. 

If you suffer from foot/leg ulcers, you may want to look into this technology. 

Setting Goals and Sickle Cell

Happy New Year my faithful followers. With the holidays, I’ve been a bit distracted and allowed too much time to pass since my last posted.

With the New Year, you hear a lot about people making “New Year’s resolutions.” I prefer to call them goals. I have done my best to be a goal-oriented person. I usually set goals in the areas of: physical, mental, spiritual, financial, reading, art, and writing. The battle I’ve had the past three years with foot ulcers and becoming wheelchair bound, I’ve found it difficult to set goals.

This year, many of my stresses have been resolved. Many have not. I’m still wheelchair bound, and I still have a foot ulcer right now, but my outlook and mental state has improved. I finally feel at peace with my present situation in life. As a result, I felt able to set some goals.

Not wanting to overload myself with a high number of goals, I just set about six that I want to work on this month. I have found it helpful to create a checklist. I list my goals in a row at the top of a page, and write the date in the far left and right margins; this creates boxes where I can check off each goal as I accomplish it throughout the day.

Putting the goal checklist someplace where it can be seen all the time helps remind me to accomplish them. Though it’s only been seventeen days since the New Year began, I’m doing pretty well at staying on target.

Setting and accomplishing goals can really boost your morale and self-worth; at least I find this to be true. It feels good to know you are growing as a person and developing your talents. It can be hard in the beginning to stay on track in your goals. I’ve heard it said that it takes twenty-one days to make or break a habit. So if you, or I, can stick with something for three weeks, it will then become part of your daily routine.

Yesterday, somebody said something that stood out, “If you don’t step out of your comfort zone, you will never grow as a person.” If goals aren’t/haven’t been your thing, step out of your comfort zone and challenge yourself. Start small and remain committed. Large wonderful changes in life can come about through small and simple means. Also, remember to reward yourself for accomplishing your goals. That’s very important.

I hope your New Year is great.

Tribute to Dr. Bedros

I am now forty-one years old. From ages nine to forty, I had a wonderful man a part of my life. For thirty-one years, this man helped keep me alive and helped me feel safe. For thirty-one years he was my security blanket in life and medicine.

I began seeing Dr. Bedros at age nine after I had a massive cerebral hemorrhage which left me in a medically induced coma for twenty-two days. When I came out of it, he suggested--what was at that time--a new form of treatment for Sickle Cell patients; monthly blood transfusions. 

One doctor told my parents this treatment wouldn't work to prevent future strokes; that they should take me home and wait for a second stroke to happen. Dr. Bedros, however, had confidence this therapy would work to prevent future strokes. Trusting his judgement, my parents agreed to the treatment. Thankfully, thirty-two years later, I've not yet had any additional strokes.

Due to some cultural differences, when I was a boy I at times had a hard time feeling an emotional connection to Dr. Bedros. But as I grew older and as life changed him, a very strong emotional connection formed between us. With time, I came to trust his professional judgement above all others. If he said I needed a treatment, I knew he had done the research to learn that it was best for me. Dr. Bedros knew my body inside and out. He knew what worked for me and what didn't.

Though Dr. Bedros was a pediatrician, he continued to see me well into adulthood. As the years waned on, Dr. Bedros became more than my doctor, he was my friend too. A friend who I trusted absolutely and completely. The trust I had for him was unparalleled to any other person on this planet.

I often told Dr. Bedros, "There are two reasons why I am still alive today; God, and you." I long feared the day when this man of faith and science opted to retire from medicine. Nearly a year ago, that day came.

For the past twelve months or so, I held out hope that perhaps he would change his mind. Sadly, I no longer have that hope. My friend and doctor of thirty-one years is no longer a part of my life.

When I first received this news, my heart fell through the earth and tears welled in my eyes. I never got a chance to tell him thank you one final time. I never got a chance to tell him how safe he always made me feel; how a weight was always lifted off my shoulders when I saw him walk into my hospital room. I never got a chance to give him one final hug and tell him how much I loved him.

Though I have a vague idea, I don't truly know what personal sacrifices Dr. Bedros made in his life to be the doctor he was. I don't know what relationships he gave up so he could help me, and others, live far longer than we ever thought possible. There are many things about Dr. Bedros I do not know. But I do know that his effect upon my life was profound.

Wherever you are Dr. Bedros, please know that whatever sacrifices you made to be the doctor you were, are sacrifices I'm thankful for. Know our relationship can never be replaced. Know our friendship is one I sorely miss. And most importantly, know I love you and miss having you in my life.

Thank you doesn't come close to expressing all I feel for you, but it's the best I can do. Thank you Dr. Bedros for giving me life. Whatever journey God and life has in store for you, I wish you all the best. I pray peace of mind and harmony of spirit permeate your life. Be well Dr. Bedros. I love you.

Red Light Update: Sickle Cell Foot Ulcers

It's been two weeks and three days since I bought my red light. Here are some experiences since my last post.

Yesterday I had my blood drawn from my hand; the only place left to get blood. It hurt. I put the red light on the puncture point for about a minute, and the pain was gone.

Last week I cut myself pretty deeply on a piece of glass. After cleaning it, I used my red light on it. After treating it, the pain was gone. For the days following, the only pain from the cut I felt was if I pushed on it or banged it. It quickly scabbed over and healed.

In regards to my foot ulcer, my pain is still drastically reduced. When it does hurt, I use my red light and the pain is reduced by a lot, if not gone entirely.

My 72 year old mother was playing with Buster, our Lab/Shepard mix who is one year old, when his claw punctured her skin. Being the age she is, typically she'd have a lot of pain, tenderness, and the wound would take a long time to scab over. This time, however, she immediately used the red light on it. The wound promptly sealed closed and scabbed over. Using the red light on the wound twice daily, she has experienced little to no pain. A wound like this would tend to break open again and again. But as she continues to treat it with the red light, the wound is progressing towards healing at an accelerated rate. She is thrilled and amazed.

I am very grateful I found this technology. It's really helping me in a variety of ways.

Red Light Day Six

Today is Tuesday November  25, 2014. On Wednesday of last week I received my red light in the mail and began using it. For the fifth day since receiving the product, I have awoken with very little pain from my foot ulcer. Typically when I awake and put my feet down, the first 20 minutes are very painful. The blood rushing to my feet causes my ulcer to burn like fire. It's awful. I know this red light is making the difference.

For the past two nights before going to bed, my foot began hurting. Typically I would have to redress the wound so I could apply lidocaine and reduce the pain. Instead, I used my light on my foot and around my wound for fifteen to twenty minutes. After doing so both nights, the pain was either gone entirely or drastically reduced. I can't wait to see if/how much more quickly my wounds heal as a result of using this light.

I have something else to report. And I  don't know if this is a result of using the light, or a result of feeling more optimistic about my situation--but for the past three days or so I have felt as though I've had more energy and been more alert. Like I said, this could simply be because I'm no longer depressed about my wounds and feel hopeful that I found something that will help them; it could be a result of being in less pain from my wounds; or it could be that the red light is improving my health in ways that not measurable. Perhaps it is all of the above. I only know I feel better, physically and emotionally, than I have in recent memory.

I will continue to update my readers on how my life is being positively impacted by use of this device.

Red Light Therapy & Sickle Cell Foot Ulcers

I know some people may be skeptical about this, but I feel like sharing anyway. Through happenstance, I became aware of, and began to research, “photonic therapy” or “red light therapy.” Clinical medical studies have proven the benefits of this light treatment to include: reduction of pain and inflammation; increases cellular regeneration and healing; improve circulation; relax muscles; and much more. I read several studies where diabetic ulcers treated with photonic therapy healed 70-90% quicker than those treated with placeboes or conventional means. Needless to say, my interest was more than piqued. Sickle Cell leg/foot ulcers are not dissimilar from Diabetic ulcers.

I have been so depressed about my foot ulcers. For the past four years, it’s been a constant battle. I no sooner get over one wound and another one breaks out. After doing my research, I became very hopeful that maybe the Lord lead me to something that will not only help my wounds heal, but help prevent them from forming in the first place. So, after doing a lot of research, I decided to give this a go, and bought the product sold by Photonic Health. There are other companies out there, but I liked this one the best.

Basically, it’s a technology utilized by NASA 40 years ago. The device is about the size of a small flashlight and shines a red light that has a wavelength that helps promote cellular growth. I received my product on Wednesday and began using it right away.

When I awake each morning and put my feet on the floor, the blood begins rushing to my feet, and my foot ulcer burns like its on fire for 15-20 minutes. Thursday morning when I awoke, instead of my pain being 8-out-of-10, it was a 2. Thursday was also a day spent at Loma Linda with doctor appointments. Typically, unless my foot is elevated, it begins burning badly. When I go to the doctors, I can’t wait to get home, elevate my feet and put some lidocaine on my wounds because they hurt something awful. This Thursday was different. I had very little pain all day, and by the time I got home, the pain was still very slight; not at all at the level I typically experience.

Though I have only been using this light for five days, I am very hopeful and encouraged by the results I’ve already seen. Over the past five days, if my foot began burning at all, I have used the red light on it for about five minutes and the pain was gone. This has been true for the arthritis pain I have in my hand, and other pains. My parents have also used the red light for various issues and likewise have seen and felt positive results.

I am very anxious to see how, if at all, this device improves the healing of these painful wounds on my feet. Even if this device does little else, even if my healing time is not improved, the device has already been worth the expense. Anything that helps remove or reduce the pain from my wounds is worth the cost.

To learn more about the product I bought and how it works, click here. There are similar products out there which are used for cosmetic purposes. This device, however, is more powerful. If you go to the above website, you will see they promote their device for use on animals. It is however, designed for us on humans and animals. I think it’s promoted for veterinary use as a way of getting around selling it as a medical device and the red tape of the FDA. After all, the pharmaceutical companies don’t want devices sold that can help patients heal faster.

I know this is a long post. Please forgive me. I just wanted to share this others. I know there are other people out there who can benefit from such a device. I will keep you appraised of how, if at all, this product continues to bless my life. So far, I feel it’s worth the investment. And it may be something other people may be interested in as well.

 

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.

Winter's Tale

The change in weather can be a difficult time of year. Passing out of summer and into winter brings: shorter days, colder weather, increased pain and complications, more likelihood of hospitalization, and even depression.

With Sickle Cell Disease, cold weather equals more pain. In my adulthood, most of my hospitalizations have occurred during the winter months. This is because the cold has such a profound negative impact on my body.

Drinking the necessary amount of water can be challenging in the winter months. Because it's cold, I often don't feel like drinking the water I know I need to. It takes discipline and focus to avoid dehydration.

Staying warm means layering my cloths; usually lots of layers. I'm talking, thermal underwear (maybe two sets), long sleeves, sweater, scarf, gloves, coat, hat, and perhaps a blanket for extra good measure.

People who are not sensitive to the cold don't understand what's it's like for those of us who are. Most people, when they get chilled, are simply uncomfortable; it's an annoyance. For Sickle Cell patients, becoming chilled means pain; the sensation of needles jabbing you all over your body. And it may not go away once you are warm; it may last hours, days, weeks and even result in hospitalization. Staying warm is essential to our health.

The shorter days in winter clearly means less daylight. Less sunlight can lead to depression. My mother and I both are like Superman, our strength comes from the sun. When the winter comes, we grow anxious and depression and irritability are much more common. She and I both hate the winter.

So what is my point in talking about this? I really don't have one. I'm joking. My point with all my posts is to improve awareness. It's to help provide insight to those who have loved ones living with Sickle Cell. It's also to help encourage those living with SCD. 

Living with SCD is hard. Most people can't come close to understanding how much work it takes for us to stay alive and out of the hospital. Though it takes more work for us to stay alive, life is worth living. Never forget that.