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.

I'm Back!

To my few faithful followers, I apologize for neglecting my blog these past few months. I am back and will be a faithful blogger again.

As I have commented before, I am now wheelchair bound due to AVN of the hips. About four months ago I received an electric wheelchair through my insurance. I then needed a way to transport it to my doctor’s appointments. At the suggestion of a family member, I held an online fundraiser. In two months time I raised the $5000 I needed.

Receiving donations from so many friends, family and strangers in such a short period of time was a massive morale booster. It was amazing to receive the outpour of support from so many people. Regradless if I received a $5 donation, or my most generous amount of $650, I was grateful for every dollar. I know people gave what they could; and for some people, $5 was all they had to give.

I now have a means to transport my wheelchair and have been able to take it to the places I need to. For the first time in over a year, I was able to go to the grocery store by myself. I bought my dear mother flowers, just because I could.

I was so weighed down with remorse about being confined to a wheelchair. The hardest part was the loss of independence. I had to depend on someone going with me everywhere I went to push me in a mobility chair that was donated to me. It was a helpless and degrading feeling. I hated having to have people push me around in a wheelchair. Now that I can take my power-chair to the places I want and need to go, I have my independence back again. It has boosted my spirits so much.

When I first found out I could not have my hip replacement surgery and would be confined to a wheelchair, I was devastated to say the least. It was something I never prepared myself for. Only now am I beginning to feel as though I’m making peace with my new reality. And the generosity of so many people helped to make that happen.

I think my point in sharing this on my blog is this: Speaking personally, I at times struggle to have faith in people. Friendship is something I sometimes have troubles believing in. The help I received from so many people to get the things I needed to transport my chair...it not only helped my morale in regards to being in a wheelchair, but it helped me believe in people. In my time of need, my true friends gave of their means. And that means a lot to me.

The things we endure as Sickle Cell patients, it profoundly impacts our relationships with other people. Sometimes its hard to keep faith in them; or such is my experience. As I have said many times in other posts, we have a choice in how we allow our illness to impact our life. We choose how it impacts our relationships. We choose what kind of man or woman we are going to be in spite of our afflictions. Like the knight said near the end of Indiana Jones and the Last Crusade said, “Choose wisely.”

SCD & Pain Meds #3: Good Judgment

Some time ago, I read a post on the Sickle Cell Warriors facebook page that has haunted me a little. A young man, I believe he was in his twenties, said that his father, with whom he lived, had a rule; if anybody was using methadone for pain management, they were not allowed to drive. When I read that, it saddened me that this man’s father didn’t trust his son’s judgment.

For home pain management, I believe I was first prescribed Tylenol with codeine around the age of fourteen. By the time I was that age, I had proven to my parents that I only used that medication when needed and I never used more than prescribed. When I began driving at the age of seventeen, I always timed out where I would be when the pain medication I was about to take, would kicked it. Back then, my pain medications made me very drowsy, and I always took the necessary actions to ensure I would not be driving when that happened.

Over the years, the prescribed pain medications I take have changed; but that same judgment has not. I’m grateful that my parents trained me to have and use this good judgment. Long before I began driving, it was drilled into me that driving while under the influence of pain medication is just as dangerous and illegal as driving drunk or high from “recreational” drugs.

For the past ten plus years, I’ve been using methadone and moraphine for my home pain management. Because I’ve used these medications as long as I have, very seldom do they make me drowsy or impair me so as to make driving unsafe. Though they seldom make me drowsy, there certainly are times when they do; and when they do, I don’t drive. Sometimes this means not going somewhere; sometimes it means waiting to take my medication; sometimes it means asking someone else to drive.

I express these things to you not to toot my own horn about my Yoda-like wisdom. My purpose is to illustrate to parents and patients...just because you are taking prescription pain killers, doesn’t necessarily mean you can’t be trusted to drive.

Good judgment is key to so much in life. When to drive and not drive when taking prescription pain killers demands good judgment. Help your child learn this life skill. As a parent, you have to start early in training your child on how to use these medications responsibly. As a patient, we have to acknowledge the dangers in using these medications, and always act accordingly. Prove yourself worthy of the trust your parents and doctors are putting in you. As you do, no one will ever have just cause to question your integrity.

Avoiding Hospitalization from Sickle Cell Pain Crisis

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

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

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

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

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

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

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

Starting a Fundraiser

After jumping through all the required hoops my insurance required, I finally receive the electric wheelchair I'd been hoping to receive. It was delivered on Valentine's day. When I saw it, my heart sank a little. I felt as though a jail-cell door had closed on my life. It has taken a few weeks to emotionally move past feeling that way. Living with Sickle Cell, there are many things I prepared myself for. Spending my life in a wheelchair was not one of them.

Presently, I don't have a way to transport my chair on my car. A wheelchair car carrier is not something my insurance covers. At the suggestion of a family member, I began an online fundraiser. The amount of money that has been raised in a short time has been amazing. The generosity of my friends and family has touched my heart.

The sacrifice of others to help me regain a portion of my independence is helping to remove the shadow of darkness and depression that has clouded my mind. My heart truly has been touched.

Coconut Oil Helps Sickle Cell Avascular Necrosis

I have a brother who is big into natural remedies and herbal medicine. He's always trying to find things to help me. One of the many things I've tried that have actually helped is cocoonut oil.

Coconut oil can be:

• Used in cooking in place of vegtable oil;
• Used on the skin to help with dry skin;
• Used instead of butter on popcorn;
• and many other things I don't know about.

It can also be taken internally. One of the benefits is that it acts like a lubricant for the joints. So if you are having a great amount of joint pain (not Sicke Cell pain), it may help.

At the sugggestion of my brother, I began putting coconut oil in my morning oatmeal. My purpose in taking it was to help relieve some of the horrendous hip pain I'm always experiencing. Chuck, my brother, told me it would take about two weeks before I noticed a difference.

The avacular necrosis in my hips has put me in a wheelchair. Getting into and out of bed is very difficult. Two weeks after I began taking coconut oil, I noticed a HUGE difference. I was able to get in and out of bed more easily and the pain I daily felt from my hips was greatly reduced. Needless to say, I don't let a day go by without putting a tablespoon full of coconut oil in my oatmeal. My hips causes a lot of discomfort. Coconut oil certainly hasn't removed all of my hip pain, but it has significantly reduced it.

I know there are many Sickle Cell Warriors out there who suffer from avascular necrosis. Maybe coconut oil can help some of you as well.

Stay strong my fellow Warriors. Keep the faith. Stay close to God. Drink plenty of water. Eat well. Sleep well. Stay away from recreational drugs and alcohol. Avoid stress. Choose to be happy.

Until next time my friends.

Oxygen Use and Sickle Cell

Please forgive my failure to write a post in almost three weeks; I’ve been going through a lot emotionally. The post topic for today is the use of oxygen.

About thirteen years ago—I was twenty-seven at the time—I was awaking each morning having a pain crisis. They were mild crises and would dissipate after about thirty minutes to an hour. My doctor ordered a sleep study. It took a number of sleep studies to isolate the issue and find the right fix. I had sleep apnea.

Sleep apnea is a disorder that causes a person to stop breathing one or more times while sleeping. Pauses in breathing can last a few seconds or a few minutes and can happen dozens of times in an hour. The patient will sometimes start breathing again with a loud snort or choking sound. People who are overweight or have large tonsils are often more likely to suffer from this condition. Due to the constant interruption to their sleep patterns, sleep apnea sufferers will feel very tired during the day.

When I was diagnosed with sleep apnea, I was first given a CPAP (continuous positive airway pressure) device. A small mask covers the nose and mouth (affectionately called by my brother, “the Darth Vader mask”). A tube runs from the mask to a small machine. When worn properly, the CPAP machine uses mild pressure to keep the patient’s airway open; this prevents those pauses in breathing.

My brother uses a CPAP device and loves how it has improved his sleeping. For me, however, it did nothing to prevent the pain crises I was having each morning. After another sleep study, it was discovered that my oxygen level dropped to 70% while sleeping. Instead of a CPAP device, I began sleeping with oxygen at night. That corrected the problem.

For the past twelve or thirteen years, I have used an oxygen concentrator while I sleep. When you are in the hospital and wear an O2 mask or nasal cannula, you receive 100% pure oxygen. Using the air in the room, a concentrator removes the nitrogen and delivers 87%-95% oxygen to the user. When last tested, my machine was 98% comparable to 100% pure oxygen; so that’s really good.

Since I began sleeping with oxygen, I seldom wake up in crisis; though it does occasionally still happen. Thankfully, during waking hours, my O2 levels are normal and I don’t need to use oxygen. When I’m having a monsoon level pain crisis, I use oxygen during the day time. I have used it 24hrs a day for two or three days straight when I’m having a bad crisis. When having a severe crisis, I can instantly feel a difference when I put on the oxygen.

I personally feel every Sickle Cell patent needs to have oxygen available to them at home. Using oxygen when I sleep and having it available when in crisis has made a big difference in my life.

¶ Preparing to write this post, I typed “sleep apnea and sickle cell disease” into my search engine. I found numerous informative articles. Emerging data shows that Sickle Cell patients who suffer from sleep apnea are at higher risk for strokes and pain crises. Another article spoke of a 12-year-old patient who suffered from sleep apnea. However, when her tonsils were removed, she showed a dramatic decrease in the number of hospitalizations and pain crises. Having just learned this, I can’t help but wonder how I, as a child and teen, may have benefited from having my tonsils removed.

I think it worthwhile for parents and patients to research this subject and discuss it with their doctors.

SCD & Pain Meds #2: Tolerance, Dependence, and Addiction

Addiction to prescription pain medication is a serious issue in our country. In fact, more people are addicted to prescription pain medication that all other drugs combined excluding marijuana. As parents and patients, this is something we have to be aware of and fight against. Having said that, we need not allow fear of addiction to deprive those in need of pain relief. The key is to be both informed and disciplined. Part of being informed is understanding the differences between tolerance, dependence and addiction. Misconceptions about what each of these mean are held by medical professionals, patients, and the public in general.

Tolerance
Many people believe that individuals regularly taking pain medication will, over time, need more medicine to get the same relief. Based on the research I’ve done, the truth is this is not likely to happen. Building up a tolerance against the medication’s side affects is more typical.

The four main effects of prescription pain killers are: lessoning of pain, drowsiness, nausea, and constipation. Tolerance against drowsiness and nausea is what generally takes place. Lessening of pain and constipation remain the same for most people. This means constipation and pain reduction are controlled, and there is seldom a need to increase the dosage of the medication. [click here for more info.]

Patients who experience a constant level of pain, can have a consistent level of pain relief from the same dose of medication over a long period of time. The need for higher doses of pain killers is due to worsening of pain rather than building up a tolerance to that medication. [click here for more info.]

I personally have found this to be true. I have pretty much been on the same dosage of pain medication for more than ten years. Most of the time I don’t become drowsy or nauseous from my meds. They do what they are meant to, they reduce my pain. Constipation is an issue but, but it’s controlled with senna, a laxative.

Physical Dependence
If you experience withdrawal symptoms when you stop taking a medication, you have a physical dependence on it. This can occur with recreational drugs, prescription pain killers, anti-depressants and other medications. With continuous use of prescription pain medication, physical dependence is normal and to be expected. Understand, physical dependence is NOT the same as addiction. [click here for more info.]

Symptoms of withdrawal may include agitation, insomnia, diarrhea, sweating, and rapid heart beat. On occasion, I have experienced withdrawal symptoms when I have run out of my pain medication or gone twenty-four hours or more without taking my meds. My body most certainly has developed a dependence on my prescription pain killers. I do not, however, have an addiction to them.

Addiction
Physical dependence and tolerance relate to changes in the physical body. Addiction, however, is behavioral; it’s the use of drugs for non-medical reasons; it means a person is craving drugs not for pain relief but for mood altering effects.

Symptoms of psychological dependence can include:
•    Regularly using more of the drug than intended;
•    Difficulty cutting down their intake of the drug;
•    Becoming anxious about not having access to their substance;
•    Loss of interest in activities they once enjoyed;
•    Their abuse is interfering with work, family, or social responsibilities;
•    Lying or acting secretively;
•    Denial of drug use;
•    Forgery of prescriptions;
•    Theft of drugs from other patients or family members;
•    Selling and buying drugs on the street;
•    Using prescribed drugs to get high rather than for medical needs.

Pain medication should not be withheld simply for fear of addiction. Patients who use pain medication for authentic medical needs, in truth, are at LOW risk of becoming addicted; it is in fact extremely rare. [click here for more info.]

SCD & Pain Meds #1: Managing Prescriptions

I recently read a post on the Sickle Cell Warrior facebook page. Since childhood, this person’s mother has always given him his pain medication when he needed it. Though he is now twenty-one years old, he and his mother follow this same pattern. Their main reason in doing this is to prevent addiction.

The problem is, if he’s having a crisis while his mother is at work, he has to wait for her to come home so she can get the medication from her hiding place. Obviously, this is an issue because he has to wait for his mom to get home, thus prolonging and increasing his pain. While I understand taking precautions to prevent addiction, I don’t understand the logic behind this methodology.

One Week’s Worth
Teaching your children to become independent adults responsible for their own health care needs, is vital. Parents, after all, won’t always be there and patients need to learn early on how to manage their own medicine. May I suggest a couple ways you can help your child take charge of this aspect of their health care?

Like many things, baby steps is often the best approach. Rather than just one day handing your adolescent an entire bottle of pain medication, give them a week’s worth of pills, or a few days. This will allow you to monitor how quickly he/she goes through their medication. As they demonstrate to you their responsibility to self-administer, increase the amount you allot them. In time, they will prove to you, and themselves, that they able to handle that part of their health care on their own.

Calendaring
One of the methods I use to monitor my pain medication intake is by calendaring out my medication. Long ago, I purchased a five week long pill container. As you can see from the photo, I have numbered one container for each day of the month. Each container has four slots to separate daily doses of medication.

When I get my pain medication refilled each month, I lay out all thirty-one containers, and put into each slot the proper number of pills I’m allowed to take each day; two pills from one prescription and one from the other.

By calendaring out my medication in this manner I don’t have to worry about: coming up short at the end of the month; going over my prescribed daily allotment of pills; or loosing all of medication.

This method has really helped me. Before I did this, there were times when I ran out of my medication before the month was over. This happened when my pain level was higher that month than the previous one. But since I began using this system, this hasn't been an issue.

The truth is, I don’t always have a need to take all fourteen pills that are prescribed me during a 24hr period. Other times, when a bad crisis has struck me, I have to use a little bit more than what is allotted me. By calendaring out my meds like this, I know when I can take a little more medication without risking coming up short or overdosing.

Breaking Down a Pain Crisis

Having been in a moderately-severe pain crisis the past several days, I decided to write about how I feel while having a crisis. Hopefully this will provide insight to parents and others seeking awareness.

Mentally Foggy
When I’m in a moderate to severe pain crisis, the combination of the pain and the pain medication causes me to feel...foggy to say the least. It’s extremely difficult to think clearly; or type out a coherent sentence without having to correct a dozen spelling and grammatical errors. No joke; it took me almost a minute to type out that last sentence.

It Hurts to Talk
It not the best conversationalist when in pain. While in crisis I’m using all my focus to regulate my breathing and mentally cope with my pain. Also, it’s physically hard to talk when I’m having a severe pain crisis; I become short of breath very easily. In addition to it being physically difficult to speak with others, I have a hard time properly communicating my thoughts. The pain and medicine clouds everything making it difficult express my thoughts. 

It Hurts to Laugh
Like talking, laughing can be very painful when I’m having a moderate to severe pain crisis. The physical exertion of laughing, and the amount of oxygen it uses, just adds hurt to the pain, or salt to the wound as they say.

Need Oxygen
For the past twelve years of my life, I have slept with oxygen at night. Without it, my O2 levels drop to 70% when I sleep. I have an oxygen concentrator. It’s a machine that uses the air in the room to create oxygen equivalent. When last tested, my machine was 98% comparable to pure oxygen. When I’m having a severe enough pain crisis, like right now, I use the oxygen when I’m awake and asleep. Sometimes I will use my concentrator for several days straight. It certainly helps.

Impatient
It’s very difficult to be patient when you’re in pain. In fact, I often don’t realize how impatient I am being with friends or family members when I’m not feeling well. And sometimes I don’t feel well for weeks or months at a time. I imagine being friends with a Sickle Cell patient has it’s own set of challenges; but we are worth it.

Food and Water
It’s hard for me to feel a desire to eat when I’m in a severe pain crisis. Pain can often cause nausea, so I think that has something to do with it. I also have to force myself to drink an appropriate amount of water when in crisis. And of course, this is the time when I most need it.

Don’t Want to Move
Sickle Cell pain isn’t like other kinds of pain; you can’t just work past it. It doesn’t take much to cause a mild pain crisis to transition into a really bad one. Sometimes just moving an arm or standing up makes the pain worse. Often, you can’t and/or don’t want to move in the slightest of ways.

It’s Hard to Read
Reading, writing, and drawing were/are things I can do that put little strain on me. However, there are times when the pain is so bad that it’s impossible to think straight enough to read or write. There have been times when I’ve tried to read a paragraph of something, and it’s taken ten minutes to get through it and understand it. Or times when I’ve tried to write something and I just can’t get it out. Pain alone will do that do you. Pain medication alone will do that to you. When you combine severe pain with increased and potent pain medication...an Einstein you do not become.

Physically Tiring
It’s mentally and physically tiring being in constant pain. It zaps you’re mental and physical strength. Sometimes, the act of lifting a glass of water is difficult and momentarily enhances your pain. As a result, getting up and doing anything is extremely taxing.

Run a Fever
It’s not uncommon for me to run a low grade fever while in crisis. As I mentioned in my “About Me” section, I came to my family straight from the hospital as a foster child. My mother had borne three children of her own before fostering and adopting. As an infant, before I was diagnosed with Sickle Cell Anemia SS, my mother suspected something was not right. Often I would cry as if in pain and run a low grade fever. That symptom of having a fever while in crisis has continued throughout my life.

Spiritually Numb
For me, maintaining my spirituality and feeling God’s presence is the number one most important thing in my life. Sometimes the combined effects of the pain and medication causes me to feel cut off from the spirituality I’m use to feeling. It’s not that I’ve done anything to cause that feeling; it’s just a byproduct of the pain crisis.

Stay Warm
For all Sickle Cell patients, this is always of great importance. It doesn’t take too much time in a cold room or being in the cold outdoors before a crisis can be triggered. Staying warm is extra important when in crisis. I’m even more sensitive to the cold when I’m having sickle cell related pain. In addition to wearing thermal underwear during the winter months, I have an electric blanket--that I’m using right now in fact--to stay warm.

Don’t Touch Me
Sometimes the pain is so severe that the simple act of being touched is agony. When in crisis, I don’t even like to shower; the impact of the water hitting my skin is quite painful. Being patted on the shoulder, having somebody rub my back, or having my cat lay on my lap (like she’s doing right now) can make my pain soar. When in a severe state of pain, I don’t want to be touched by anybody or anything.

Conclusion
Being married to, family of, or friends with a Sickle Cell patient requires a great amount of patience and understanding. There have been, presently are, and always will be days, weeks, months, or even years when I can do very little physically. I have lived with family who were either unwilling or unable to understand that, and it caused conflict. A great amount of conflict in fact; and that put a physical strain on my body that was not healthy for me.

My objective in sharing these insights with you is not to voice my woes. My purpose is to help family and friends of Sickle Cell patients understand what your loved one may be experiencing. Being informed and having insight will help you be more patient with that special person in your life.

"What Do You Mean by Sickle Cell Pain Crisis?"

Happy New Year to all my readers! I hope 2014 is good to you.

I’ve noticed from conversations with various doctors that the term “pain crisis” means different things to different people. For me, a pain crisis means any kind of Sickle Cell related pain. Sometimes a pain crisis is very faint and mild, other times it’s crippling agony. But some of my doctors think of a pain crisis as something that has caused hospitalization.

In my adulthood, hospitalizations have become more rare than when I was a child and teenager. In the past twenty years, I’ve been admitted less than a dozen times. The first twenty years of my life I was admitted to the hospital over one hundred. June of this year will be three years since my last hospitalization. Pain crises, however, those are very frequent.

People ask what a pain crisis feels like. It’s hard to describe. But the best way I can, is by telling people, “You know when you’ve exercised or used muscles that you haven’t used in a long time, then the next day it hurts to move? The mild to moderate pain crises kind of feel like that. The really bad ones, however, it’s like having a million needles in your back, arms, legs, knees, joints, and all over your skin. It's like they are under your skin; and every time you breath and every time your heart beats, those needles push against your skin and retract.”

Often I compare pain crises to the weather. Sometimes it’s cloudy outside and there’s a light mist of rain. It’s quiet and in the background, but you are aware that it’s present. Then there is the monsoon level of pain crises where the wind is blowing you off your feet; the rain is pouring down so hard you that can’t see a thing; thunder is roaring over head and shaking your house; and lightening is filling the sky. I’ve had the faint dull achy (aka: light mist) kind of pain crisis last as long as a year. I’ve had the monsoon type last many days. You never know.

My point in addressing this has to do with communication. When I see a doctor and they ask when my last pain crisis was, I always ask them “Tell me what you mean by pain crisis.” Usually they mean hospitalization, not Sickle Cell related pain. Proper communication with your doctor’s is of huge importance.