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.

Sickle Cell Foot Ulcers: My Wound Care Process

I’m still struggling with foot ulcers. I don’t know why, but the last 5-10% of a wound always takes the longest to heal. If 90% of my wound heals in two months time, the remaining 10% will take two addional months. Don’t ask me why. Nor can the doctors explain why.

I thought in this post I would explain my process I use for cleaning my wounds.

1.  Lay out your supplies in an organized way.
2.  Have a clean work area
  a.  I have a fairly large plastic tote with a lid that holds all of my cleaning supplies. I place a clean hand-towel on top of the lid and rest my foot on top of the tote; it’s my “work area”.
3.  Have something to collect your waste
  a.  I have a small trash can that I line with plastic grocery bags.
4.  Sterilize your hands and/or use gloves.
  a.  Though I never use gloves, I always sanitize my hands before starting.
5.  Carefully remove the old bandage
  a.  Sometimes it hurts to remove the tape that is on my skin. To make it less painful, I’ll lightly spray the tape with my wound cleanser. This helps a lot.
6.  Clean the wound
  a.  Using gauze sponges, I remove the bulk of the medication. I then spray the wound with wound cleanser; I use MicroKlenz.
  b.  I then pat the wound dry with clean gauze pads. For me, using a swiping motion with gauze is agonizing. I gently place the gauze on the wound and dap it.
7.  Lidocaine
  a.  The pain from cleaning the wound is usually pretty severe. Lidocaine jelly has been a wonderful blessing. A little lidocaine goes a long way.
  b.  Using a q-tip, I apply the lidocaine to the wound. It takes only a few minutes for it to begin reducing the pain. I leave it on for about five minutes.
8.  Second cleaning
  a.  Using q-tips, I remove as much slough from the wound as I can. I also clean the area around the wound and remove as much dead tissue as I can. Keeping the wound and surrounding tissue as clean as possible is vital.
  b.  I then use gauze pads to remove remaining lidocaine.

9.  Apply prescribed and/or preferred medication.
  a.  When I go to the wound clinic, the nurses always put the medication on the Telfa (non-stick gauze bandage) and then put the bandage on the wound. I dislike this method of application for the following reasons. 1) It puts medication on the healthy skin as well as the ulcer; 2) it causes the healthy surrounding tissue to become macerated (wet), weakened, and break down; and 3) it makes a mess.
  b.  When I apply my medication, which is Silver Sulfadiazine cream most of the time, I use a q-tip to put medication on the wound and only the wound. I clean all medication off the surrounding healthy tissue.
10.  Bandage the wound
  a.  Telfa is a non-stick gauze bandage. This means it doesn’t stick to the wound and is not painful when removing it.
  b.  When I cover my wound, I cut the Telfa to fit my wound. I don’t use a massive pad to cover a small wound. By cutting the Telfa to fit the size of the wound, it helps protect the healthy skin and keep it from breaking down. So if my wound is boomerang shaped, I cut the Telfa in the same shape.
  c.   Be careful not to use too much medication, whatever it may be. It can get very messy, gooey, and cause healthy tissue to break down.
  d.  If I am using manuka honey, I have to use a larger size telfa bandage than I do when using silver cream. The honey will leak all over the place if there isn’t a big enough bandage to contain it all.
11.       Tape the bandage
  a.  Everybody’s skin is different. For my skin, the 4M paper tape is best. I use as little tape as possible because it saves on tape and protects my skin. Using a lot of tape that really adheres to the skin is painful to remove and risks damaging the fragile skin around my wounds.
12.       Wrapping the wound
  a.  Depending on the wound’s location and circumstances, I wrap the wound using a conforming gauze roll.

Though it is often painful to do so, we have to take care of our wounds. Some days I just dont feel like messing with my feet. But I suck it up and clean them anyway. Normally I clean my wounds twice a day. Sometimes, due to the pain, I have to do it three or four times a day. I just have to clean the wounds and apply lidocaine to reduce the pain they cause. 

These wounds suck. They are awefully painful. They are frustrating to deal with. It plays with your emotions when you get wound after wound and it seems unending. But, it is what it is and we have to deal with them. Keep your wounds clean. Keep your skin healthy. Avoid dry skin. Be strong and have faith.

Meditation: Coping with Stress & Sickle Cell

When my means of transporting my wheelchair fell apart, I was under a serious amount of stress. For nearly three months I was consumed with thoughts as to how I was going to get out of the dilemma I was in. I was so stressed that it was beginning to impact my health, and I worried it was going to land me in the hospital; something I’ve avoided for almost three years now.

The anxiety I felt caused an odd tingling chill to run up and down my spine. My skin itself felt as though it was shivering. My whole body had a faint dull ache.

When I began feeling this way, I decided to start meditating. As can be read in “More on Meditation” and “Controlling Your Pain,” I use to meditate three times a day; always before taking pain medication. The past year or two, I’ve been hit and miss with that practice. But being as stressed as I was, I knew I needed to resume my meditation sessions to help calm myself down. And it worked.

Sometimes I used audio recordings of singing bowls. Other times I used my own singing bowls. Regardless of which I used, the benefits were immediate. While meditating, I often recited various phrases in my mind. Here are some examples:

   • “My mind is calm. My body is relaxed. I am totally at peace.”
   • “I am mentally calm. I am physically relaxed. I am totally at peace.”
   • “I am filled with light and laughter.”
   • I may imagine Jesus Christ is reaching out to me, touching me with his hand, and saying to me, “Your faith hath made thee whole.”

I also adopted the practice of ending my meditation sessions with a prayer. By combining prayer with meditation, I felt a greater level inner calm. At the close of each meditation session, the physical stress and mental anxiety I previously felt, had vanished. There is zero doubt in my mind that my meditation practices helped keep me out of the hospital during these past few stressful months.

All through my life meditation has been of huge importance to my physical, mental, and spiritual health. In regards to my chronic pain, my doctors marvel that I’ve been on the same pain medication regiment for many, many years. I haven’t had to increase my dosages or change prescriptions for some time now. I explain to them this is because I use a variety of techniques to mentally manage my pain along with my medications. Meditation is my first tool in managing my pain. Pain medication is the second.

Whether you use it for stress or for pain management, I hope you also learn to use the powerful tool that is meditation.

Hello Again

I realize I have been absent from my blog for some time now. I didn’t realize how long until today. Hopefully I will be more faithful at posting. Again.

My attention these past few months have solely been on finding a means of transporting my electric wheelchair. As I wrote in “I’m Back,” I had an online fundraiser that was successful and promptly purchased a Bruno Chariot to transport my wheelchair behind my car. Two months later, I began having problems. Apparently the snake oil salesmen that sold it to me, did so knowing the trailer was not rated for my car. Because it wasn’t rated for my car, the trailer broke two hitches. 

For over two months I struggled to get a refund, and finally received it in full. I then sold that car and hunted for a new means of transporting myself and my wheel chair. After much stress, prayer and investigation, I decided to buy a wheelchair van. After finding a used van in my price range, that is what I purchased. So once again, I am able to get about on my own.

It’s easy to take for granted the simple things in life. Like being able to go to the grocery store by yourself and not have to have somebody go with you so they can push you around in a wheelchair. Independence is such an important thing to have. Until you loose a measure of it, you don’t realize how much you cherish it.

Well...having not posted any articles in some time, I have had time to think about several topics I wish to write about. By not writing for almost three months, I feel as though I have let my followers down. I apologize to you for my negligence, and will do my best to be more faithful in the future.

Sincerely,
    Your friend,
          Jon

Should I Have Children with Sickle Cell?

I recently responded to a post on the Sickle Cell Warrior’s facebook page. A young woman who was dating a young man learned that they both are carriers of Sickle Cell and if they marry, there is a chance that their children will be born with SCD. This person wondered if she and her love interest should dissolve their wedding plans and never risk bringing a child with SCD into the world.

I was surprised that many people responded by saying, “Yes. Break up. No parents should ever bring a child into this world knowing it may be born with Sickle Cell Disease.” We are all entitled to our opinion, and I won’t tell anyone they are wrong for feeling that way. But I strongly feel differently about the subject.

There are no guarantees. There are many illnesses far worse than Sickle Cell. In pregnancy and childbirth there are many dangers that can leave a child damaged, injured, and physically and or mentally impaired for the rest of their life. Not being a carrier of a genetic illness doesn’t guarantee you a healthy child.

I, like my younger sister Kimi, am adopted. Kimi was put up for adoption because, unlike her other biological siblings, Kimi was not born “perfect.” She was born with portions of her brain missing; she couldn’t, walk, talk, see or do anything for herself. But during the twenty years she lived on this earth, Kimi impacted many other lives. Much of the spirituality I have, I attribute to Kimi being a part of my life.

One of my favorite stories during Christ’s ministry 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.”

What I’m about to say, I say not out of pride, but to glorify God. I have made a profound difference in the lives of many people. This has happened because of my illness. Those who are a part of my life have seen the many miracles that have surrounded it. People see the positive and spiritual manner in which I choose to live my life in spite of my pain and tribulations. Consequently, they are made better by it. This is a gift and a responsibility our Heavenly Father has given me. I am not alone in this. Many people with all sorts of mental and/or physical challenges touch the lives of those around them in very special ways.

Too often our society puts too much emphasis on glorying the perfection of the human form above glorifying the perfection of God’s love. There are many out there who feel that quality of life is defined by how physically and/or mentally fit a person is. All life has value and quality; regardless of how physically or mentally capable they are.

Yes, living with Sickle Cell is a difficult challenge. Yes, like others with my illness, I live with a lot of pain and discomfort; but it’s a life I’m happy to have. I’ve been blessed with an amazing family, good friends, and a faith in God that sustains me. If I had the choice to live the life I have or not be born at all, I would choose this life.

To anyone thinking of not bearing children simply because it might be born differently than most of the population, I beg you to reconsider. With every adversity come blessings in greater proportion. If a child is born different, a beauty will surround that life that would otherwise not be present. My sister Kimi, for example, could do nothing for herself. The consequence of that was, Kimi did so much to bless the lives of everyone in my family, and everyone that knew her. The same is true for those living with chronic illness; that is, through them, the works of God are made manifest.