Sickle Cell Pain Crises & Showers

For about three or four weeks now, I’ve been having a pain crisis. It’s not thunder, lightening, monsoon kind of pain crises that completely debilitates you; it’s more like a light mist. You know, the kind that messes up the wash job on your car; the annoying kind of pain crisis that hurts just enough to leave you feeling achy, icky, and tired.

When you have pain crises that run on for weeks, there are small things that are challenging; like taking a shower. I don’t know if other Sickle Cell patients experience this or not, but showering is often a painful chore.

For me, water has always been like a massive leech that sucks the life right out of me. Baths, spas, swimming pools, lakes...they all cause pain crises if I’m in them too long or if they are too cold. I’ve lived in California most of my life and have never swam in the ocean. I’ve been to the ocean, I’ve been on the ocean, and I’ve even put my footsies in the ocean, but that’s as far as I go; it’s much too cold.

As for showers, they often leave me exhausted and trigger a crisis. If I’m having a crisis that rivals a monsoon, I don’t bother with showers. In addition to the way water zaps my strength, the impact of the water on my skin is FAR too painful. If an intense pain crisis that lasts days—as smelly as it sounds--I have to skip showering. It’s terrible when you’re illness makes being clean a painful chore.

When I have a crisis, the pain is usually in my chest and back. The monsoon type of crises are whole body and it hurts to be touched. I can’t count the number of times I’ve gone to the hospital and had the following conversation with the evaluation nurse:

They will ask, “Are you having chest pain?”  Telling a nurse in an ER that you are having chest pains is a sure way to immediately get seen. They have to assume that it’s your heart and that you are dying of a heart attack.

    “I’m not having chest pains in the way that you mean, but I am having Sickle Cell pain which is in my chest.”

    “So you’re having chest pain?”

    “I’m having Sickle Cell pain, that happens to be in my chest.”

    “So you are having chest pain.”

    “No, I’ve having Sickle Cell pain in my chest, as well as my back and everywhere else.” And round the conversation goes. It’s like the Abbott and Costello routine, “Whose’ on first?”

    I remember one day I went to a Church activity for single adults. I was having a pretty bad pain crisis and it was very taxing to go, but there was a certain young woman there I wanted to see. While at the social, I was sitting beside a guy I knew. He asked how I was feeling and I told him I was having a pain crisis. He went to place his hand on my knee in a reassuring manner, and I asked him to “please don’t touch me because it hurts to be touched right now."

Two seconds later he thoughtlessly, and void of any care, slammed his hand down on my knee and said, “Well, I hope you feel better.”

Pain coursed through my body and I yelled, “don’t touch me!” Idiot nearly fell out of my mouth, but I restrained. He wasn’t light on the Christmas tree.

Growing Emotionally from Sickle Cell

Avascular necrosis is a complication of Sickle Cell Disease that I have always been aware of. Since eighteen years of age, I’ve had back pain related to it. I have several collapsed vertebra that give me a slightly humped back and a fair amount of pain. It has only been the past few years, however, that I became aware that hip replacement surgeries are common for SC patients, often in their twenties; as are shoulder replacements.

Living with Sickle Cell Anemia, there are a great many things I prepared myself for in life. Needing a double hip replacement surgery and ending up in a wheelchair was NOT among them. Emotionally, I’ve been completely caught off guard by this new challenge in my life.

One of the challenges I’m having is coming to terms with how people see me. All my life, other than being thin, I’ve looked perfectly healthy. I’ve been able to walk and move about normally. Now I either hobble around with a walker or use a wheelchair. People look at me differently, and this in turn causes me to look at myself differently. I know it’s pride, but I don’t like looking as sick and feeble as I feel.

Right now I’m in the process of getting my insurance to provide me with a proper wheelchair. At home, we have a hospital-like wheelchair that I’ve been using. But it’s too heavy for me to lift in and out of my car. So when I go places, I have to use a walker or have somebody go with me who’s strong enough to get my chair into and out of my car.

Just recently, a person from my church gave me a lightweight wheelchair; it was a wonderful act of kindness that I am very grateful for. However, it’s not the type of chair I can roll myself, I have to have somebody push me in it. It’s very humbling.

For the time being, I am unable to move freely about on my own. Accepting this has been a challenge. I’m hoping once I get a proper chair for myself that I will regain the mobility I’ve lost and reclaim portions of my life that.

One of the things that is making this transition a bit easier is the kindness of others. I find myself confronted with the generosity of friends and strangers on a regular basis. Most people go out of the way to open the door for me or help me in some other way.

Though I am having to accept that truth that I may be seen differently by others, this new trial is allowing me to see others differently as well. It’s easy to think there is only darkness in the world. But more often than not, I’m seeing a light in others that I did not see before.

When we face a new complication from our illness, when our health requires that we change our life in some way, it helps to find the good in it. I personally try to search for what can be learned from this newest trial. We can always grow from the challenges we face. We just have to be patient and wise enough to find how.

Live a Long Life with Sickle Cell

When I launched this blog, I worried about finding enough subjects to write about each week. However, reading the Sickle Cell Warriors Facebook provides ample inspiration, and does so in many ways. One of the posts recently asked why many Sickle Cell patients believe they won’t live a long life. That question once again made me think about my view on this subject. I know I already covered this in Section 13) Believe You Will Live a Long Life, but I wanted to address it again and in a bit more depth.

I’m especially speaking directly to any and all young people reading this post. As a teenager--due to my many hospitalizations—I never believed I would live to see my eighteenth birthday. I was absolutely convinced of this. Nobody instilled that into me. My doctors never told me what my life expectancy was. My parents most certainly never treated me like my life was going to be short; this was something I had convinced myself of all on my own.

In spite of this belief, I had ambition in life. By the time I graduated high school, I wanted to be a psychologist; and that’s what I went to college for. Though I wanted to go to college, though I wanted to have a career, underneath that desire was the belief that I would not live to see it happen.

Going to college was difficult. Due to health complications, I often had to drop all my classes and retake them the next semester, where the same thing would happen. Though it took me six years, I earned an AA degree. Because it took so long to get a two-year degree, I really struggled to stay motivated to continue my education.
In addition to my falling motivation, I had it stuck in my head that I would never live long enough to achieve my career goals. I allowed this belief to dictate what I could and couldn’t do in life. I thought, “What’s the point in getting a degree? I will never live long enough to use it, and my health will never allow me to work.” I defeated myself before I even began in life.

After finally earning my two-year degree, I stopped going to college. However, I never stopped educating myself. Never has there been a time when I wasn’t studying something new, working on a project, learning about something that both interested and bettered me. Keeping my mind busy has always been important to me.

Now I’m forty years old. Crazy! From a teenage perspective, I must seem ancient. Trust me, some days I feel ancient; but I am amazed to still be here. Looking back, I have a lot of regret. I so regret that I never once believed I’d live a full life; I regret that I stopped myself from continuing my education or pursuing a career; I regret that I lived my life waiting to die.

Thankfully, there is still time. As stable as my health has been, there’s no reason to believe I won’t live another twenty or thirty years. There are many Sickle Cell patients out there who have lived into their 70’s and even 80’s. There are Sickle Cell patients out there who are doctors, nurses, lawyers, and musicians. So why can’t you or I do likewise? We can. The first step is, believing with all your heart, might, mind and spirit, that you WILL live a full life.

My purpose in this post, obviously, is to help any and all young readers fully embrace the truth that I did not. Don’t hope you will live a full life. Don’t believe you will live a full life. Know with absolute certainty that you WILL live a full life. Expect nothing else. Yes, you are going to be hospitalized. Yes, pain crises will come. Yes, unexpected complications of your illness will arise. But if you take care of your body, mind and spirit, there is no reason to believe you won’t live a full and happy life.

Green Salads and Sickle Cell

In addition to having lost a lot of weight, I haven’t felt very well physically. I’ve felt exceptionally tired, had zero energy, I’ve been mentally cloudy, and have generally felt listless. To put it simply, I’ve felt like a zombie for many months.

Talking with my nutty nutritionally obsessed brother—I love you Chuck—he suggested a few things. Actually, he suggested about 10,000 things; but I was able to absorb only some of the tidal wave of information he gave me.

He told me to eat a salad every single day. In the salad he told me to put: kale, bok choy, spinach, and Romaine lettuce; basically any kind of green leafy lettuce. So for the past week, that’s what I’ve been doing. I mix all those together, add an entire avocado, crotons, bacon bits, tomatoes, cucumbers and some salad dressing. Sometimes I make a smoothie instead—I’ve found tons of recipes online.

Within three days I began noticing a difference in how I felt. A week of doing it, I felt AMAZINGLY better. I felt alert, energetic, and more mentally clear than I have in a long time. Sunday and Tuesday of this week I failed to eat my daily salad. With each day I began to feel more tired than I did the day before. When I began eating my salads again, surprise, I began to feel better again.

I’m trying to put forth the effort educate myself about nutrition. Doing just the little bit that I have has really had a positive difference in how I physically and mentally feel. I can’t help but wonder...if eating a salad and avocado a day can make the HUGE difference that I’ve experienced, what can more significant changes do for me?

I’ve always knows eating balanced meals has impacted my health. But beyond that, I never really thought much about nutrition. But I am now. And if you haven’t, perhaps you should.

Sicke Cell: Gaining Weight with Avocados

Over the past two years, I have gone from weighing 125lbs to 99lbs. In my post, Sold on Ensure, I spoke about how drinking this product twice a day had helped me put on three pounds. After about two weeks, I stopped drinking Ensure because I noticed my ankles were swelling. The product has moderate levels of potassium in it, and potassium is something I have to be very careful with. When I stopped drinking Ensure, the swelling went away. So until I talk with my doctor about how much Ensure is safe for me to drink, I’m holding off on adding it to my diet.

When I stopped drinking Ensure, I lost the weight I had gained and dropped down to 99lbs. Clearly this isn’t good. I’m very concerned about my weight loss. Talking with my brother, who is BIG into nutrition, he told me to eat 2-3 avocados every single day.

Avocados are a high calorie natural food. People trying to loose weight often eat nothing but avocados. So I gave it shot. For about three weeks now, in addition to my three meals a day and snacks in between, I’ve been eating one to two avocados each day. The other day I stepped on the scale and was amazed to see that I had put on eight pounds! Wahoo!

In the afternoon and/or evening, I will cut an avocado in half, sprinkle a little salt and pepper on each half, and scoop out a spoonful at a time and eat it. I use them as a snack, not a meal; or I will eat one with my meal; or I will make a salad and cut the avocado into chunks and put it on my salad (yes, the entire avocado; pit and peel excluded).

Hopefully I will keep gaining weight as I continue to do this. So if you or your child has a problem gaining weight, a problem not entirely unique to Sickle Cell patients, I would suggest try adding avocados to your diet.

Being Thin with Sickle Cell

All my life I have been very thin and small framed. When I was sixteen years old I was 5ft. 2in. tall and weighed all of 70lbs. I stopped growing around age twenty-one at 5ft 10in. and finally broke one hundred pounds in my mid-twenties. At the age of thirty-one, I weighed more than I ever had, 130lbs. I leveled out at 125lbs and stayed there until I was hospitalized in 2011.

During my 2011 hospitalization, I lost nearly fifteen pounds. Over the following two years, I lost another eleven pounds, putting my weight at 99lbs! That’s how much I weighed a month ago. Needless to say, I have been very concerned about my weight.

As a child, though my mom was/is a great cook, though I ate like a horse and ate healthy, nothing my mom tried would help me put on the pounds. I don’t know how many nutritionists lectured my mom during my plethora of hospital stays. They thought she wasn’t feeding me correctly. Though my mom did her best to inform them she knew all about nutrition and feed me well, she held her tongue and didn’t chew them out. In adulthood, I had the opportunity to vindicate my dear sweet mom.

I was about twenty-five years old. I was hospitalized for something or another. During my hospitalization, a nutritionist made an appearance in my room. Apparently I was in the wrong mood. She plopped herself down in the chair beside my bed and immediately began lecturing me about my weight.
“Let me stop you there,” I said. “My whole life my mom and I have had to endure you nutritionist coming in and lecturing me about nutrition. I know how to eat healthy and I eat very healthy meals. I am naturally thin. I don’t need you to come in here and lecture me when you don’t know anything about how I eat. So why don’t you leave and don’t ever come back.”

Needless to say, she left without a word. And though I’ve been hospitalized a few times since then, I’ve never had another nutritionist come into my room and bother me. There’s probably some red flag in my medical file that says, “Whatever you do, don’t send a nutritionist into this patient’s room!”

When I told my mom about the incident, she later told me, “I have to admit, I felt a little vindicated. I wanted to do that so many times when you were a kid.” Normally, I’m a very nice and polite patient. I’ve learned from too many hospitalizations...sometimes you just have to be not so polite.

For me, weight has always been a struggle. If/when I catch a flu or am hospitalized, the pounds have always flown off and been very slow coming back. It has never mattered what I ate or how much I ate, I couldn’t gain weight. Being lactose intolerant, missing a gallbladder (making it hard to eat fatty foods), and having to watch my intake of potassium and sodium, it’s hard to find foods I can eat.

SCD & Emotional Barriers #5: Friendships

As a person whose lived with Sickle Cell Disease for forty years, I’ve had my illness impact many friendships in positive and negative ways. It makes all the difference when you have friends who understand and are considerate about your condition. Indifferent friends, however, most certainly add bricks to the walls we build around ourselves.

About four years ago I went on an outing in the mountains with a group of friends. Each of them knew I had Sickle Cell. While driving to our destination, one friend complained how painful it was to move because his muscles were sore from working out the day before. I said to him, “Now you have some idea what a Sickle Cell pain crisis feels like.”

His reply was, “A what?”

My heart sank a little bit. I had been friends with this young man a few years. He frequently came to my house. Though he knew I had Sickle Cell, though we were friends, he was completely ignorant of what a Sickle Cell pain crisis was.

Later that day when my friends and I arrived at our mountain destination, we did a lot of walking. As a result of the high elevation, my reduced heart function and lung capacity, I wasn’t able to keep up with my friends. I walked slower and was further behind them. In our group there were about ten people who knew about my health condition, and several people whom I had just met.

You would think my friends would have been aware and concerned that I fell behind. But they weren’t. Of nearly a dozen friends, it was a friend’s friend whom I had just met who walked with me at slower pace. A stranger was more considerate than friends I had known for years. It’s events like the two I just shared that cause Sickle Cell patients to put up walls.

On the flip side, I’ve had many considerate friends. Something I often say is, “I can make plans, but my body can change them.” People who are close to me know that everything we plan is tentative. It doesn’t matter if we’ve scheduled something six months ahead of time; a pain crisis could strike at the very last moment and shatter my plans.

I think of one young woman in particular, Natalie; I marvel at her patience. I had asked Natalie out on a date. Unlike most girls, she said yes. The big day came. But hours before I was to pick her up, I was hit with a terrible pain crisis. I was in no condition to go anywhere.

When I called to tell her, she was amazingly understanding. So we tried again for the next week. Unfortunately the exact same thing happened and I had to cancel on her not only a second but a third time! I still can’t believe she gave me the time of day after that. Incredibly, she gave me a fourth chance. Thank goodness my body cooperated and I was finally able to take her out. She and I became very good friends. Other people have not been as understanding. Some friends, when I’ve had to repetitively cancel on them, stopped calling or lost interest.

For everyone living with Sickle Cell Anemia, it is an unfortunate reality that our body can change our best laid plans. Friends who refuse to understand why this happens are the ones who, if we allow them, cause us to built barriers. It's the people who understand this reality are those with whom we can build meaningful relationships with.

To any friend, family, or love interest who is close to somebody with Sickle Cell Disease, I ask that you please be patient. Your friend with SCD is going to have to cancel your plans from time to time; sometimes very frequently. Know your friend is just as upset about not going out as you are, perhaps even more so. For you, it may be an inconvenience; for them, it's a frustrating byproduct of living with a chronic illness. Be forgiving and tolerant. Doing so will benefit your loved one in more ways than you know.

SCD & Emotional Barriers #4: Isolation

Looking at the walls I’ve built up around myself, I see some contributing factors. One of those factors has come from not having friends visit me when I’m sick.

To date, I have been admitted to Loma Linda University Medical Center one hundred sixteen times. Over 100 occurred from ages 9-18. During those nine years, I never once had a classmate or friend visit me in the hospital; not once. I had my parents, siblings, bishops from my church, and a few church members visit me, but never a friend. Even as an adult the number of friends who've visited in the hospital has been very, very small.

When nobody visits--and I was blessed to have a family that did--when nobody calls or writes...let me tell you, it adds bricks to the wall we build around our emotions. When I came back to school or church from a long illness and people said, “I was so worried about you,” my first thought was, “Not worried enough to visit, call or write apparently.” Though there may be reasons for this--which I talk about in Section 17--it still hurts.

When a person's words of compassion are louder than their acts of compassion, resentment builds. You feel as though people don’t care; you believe their concerned expressions are just empty words; and you think, what's the point in sharing your life with anybody? When you hold the belief that there isn't anybody who sincerely cares about our well-being, it's difficult to open up and let in the people who do genuinely care.

Chronic illness forces you to be isolated for days, weeks, months or even years at a time. When this happens, you learn to do things for yourself and by yourself. You become use to the solitude and begin to emotionally withdraw yourself from others.

To parents who ask, "How can I help my child not build walls around their emotions?" My answer is--in addition to the things I talked about in Part two and three--encourage your child's friends and classmates to:
    •visit your son/daughter in the hospital or at home;
    •call your child on the phone if they can't visit;
    •send cards or emotions that express their love;
    •do something to let your child know they are missed.

Those simple acts of love can make a big difference.

SCD & Emotional Barriers #3: Apathy

There is a line in the movie about Jack Robinson, 42. The line is: "The word 'sympathy' comes from the Greek word 'suffer'. To sympathize with somebody means to suffer with somebody." It's a great quote from a great movie.

Sympathy is something that is taught. I give so much credit to my mother. I can’t recall all the times she said to me, “Try to put yourself in that person’s position,” or, “Try to imagine how that person feels.”

With the amount of pain and hospitalizations Sickle Cell patients experience, it can be very easy to become apathetic towards to the suffering of others. I credit my parents for my ability to recognize when another person is in pain and to have compassion for that pain.

It has always bothered me when somebody says to me, “I know my pain doesn’t compare to yours.” My thought is, “We all feel and cope with pain differently; and we all have our own trials in life.” I can’t allow myself to think my trial is so much greater than another individual's. I haven’t lived that person’s life; maybe what I consider to be a light amount of pain would be horrific for somebody else. Or perhaps they have mental or emotional pain far beyond what I endure. (For more on this, see Section 12).

I’m not saying I’m perfect in this area. There are times when I catch myself silently scoffing at somebody who is crying about something I would consider to be very minor. But I have to remind myself that I don’t know what’s going on in their life.

Having compassion for the suffering of another living being must be taught. When a child is continuously left to fend for themselves, left alone in a hospital bed, and is not shown compassion by loved ones, barriers build. The metaphorical skin becomes impossibly thick; the mind becomes hardened; and compassion is lost. It’s the responsibility of parents, grandparents, aunts, uncles, and loved ones to teach children how to be compassionate in spite of their own suffering.

There is an individual I know who, as a child, was never taught to think about how other people feel. Now, as an adult, this person is extremely self-centered. The only thing that matters is what he wants. He does not recognize the generosity of others; he does not appreciate what he has; and he does not seem to care about anybody but himself.

I can’t entirely blame this person for being the way he is. The compassion that was instilled in me from my youth was absent in his life. When our circumstances have caused us to steel ourselves against seeing other people’s misery, it’s hard to build deep emotional relationships other people.

Part of connecting with other people comes from wanting to love and be loved. In my mind, a compassionate heart is vital to building lasting relationships. If a child is not taught how to have that compassion...then it’s going to be extremely challenging for him/her to form meaningful bonds with others as an adult.

When your child with Sickle Cell is in the hospital, there will be many opportunities to teach her about having sympathy for the children around her. In spite of your child's suffering, seize upon those teaching opportunities. If your child is left alone, who will teach those vital lessons?

SCD & Emotional Barriers #2: Being Alone

One of the BIGGEST things that can cause a person to build emotional barriers around themselves stems from being left alone in a hospital as a child.

A hospital bed is a scary and lonely place. I was at church one day when a man was talking about his recent hospital experience. He said, “I’ve never felt more alone and isolated than I did when I was in the hospital by myself.” If a big, two hundred pound burly man admits how alone he felt in a hospital bed, then try to imagine how much more so that would be for a child. And trust me, it is a sad and lonely place to spend much of your life in; speaking as a patient.

After I had a massive stroke at the age of nine, I began receiving monthly blood transfusions. Every six weeks I was admitted to the hospital for 2-3 days. Until I reached the age of about twelve or thirteen, one of my parents stayed with me all through the night and most of the day. My mom would stay with me at the hospital during the day. Then when my father got off work, they would switch and my dad stayed with me all through the night. If I was alone it was only for a few hours at a time. My younger sister Kimi was a severely handicapped and full-care child. So it wasn’t an easy task to make sure that one of my parents was with me in the hospital as much as possible.

This was in stark contrast to what I saw from the families of many other children whom I shared a hospital room with. At that very young age I was acutely aware that many of the children were seldom visited. For some of these other kids, two, three or more days would pass before anybody would visit them; and often the visit was very brief.

I vividly recall one infant. I think I was ten years old. For the entire duration of my week long stay, nobody ever came to see or hold this baby. It laid in it’s crib, nearly motionless, entirely unloved. Though I was very young, I was emotionally impacted by that; and it’s something that still haunts me. I've often wondered what became of that baby.

When a child is left unattended in a hospital, things can happen. Some nurses can behave one way around parents and very differently in their absence. Young ambitious doctors can be too eager and aggressive in how they treat a patient. Two examples come to mind.

The first occurred when I was around ten years old. I don’t recall why, but the doctors needed to perform a spinal tap on me. I think my dad was with me during the tap, but had to leave for work immediately after. My mom would take her shift once she got my sister off to school.

 After the spinal tap was over, the doctors told me not to move around too much for at least forty-five minutes or it could injure my spine. Later my mom showed up. When she saw me sitting nearly motionless in the bed serious faced, she asked what was wrong. “The doctor’s told me not to move for forty-five minutes,” I said.

“What time was that?” she asked. I told her what time the spinal tap was over with. “Jon! That was three hours ago!”

“I know. I was scared to move.”

In the words of my mother, “That is a good example of why a parent needs to be present.” Imagine if my mother hadn’t come that day. That fear I felt for three hours could have lasted far longer had she not been there.

When a child is continuously being poked with needles, prodded by doctors, and sometimes mistreated by apathetic nurses, and there isn’t a loved one present to provide love, comfort, and reassurance...emotional barriers build. Without the presence of somebody who is emotionally invested in the child’s well-being, that child feels:
•    A gaping pit of loneliness within their breast;
•    As though nobody cares whether they live or die;
•    Afraid of what could, and is happening;
•    Depression unlike any other.

Parents, if you have a child in the hospital, please, please be there as much as you possibly can. And if you cannot be there, make sure somebody the child loves and trusts is. Yes, there will be minutes and hours when your child is alone; that can’t be helped and is fine. What isn’t fine, what will have lasting negative consequences to your child's psyche is when he/she is left alone in a hospital bed far more than having a loved one present. It's my belief that a child who is left alone will become a lonely adult.

SCD & Emotional Barriers #1 - Intro

Last week on the facebook page Sickle Cell Warriors, I posted the following question:

“I’ve learned, through a lifetime of Sickle Cell pain, how to disconnect myself from that pain to a large degree. In some ways I feel as though I have applied that ability to emotional pain. Does anyone else feel as though Sickle Cell has caused you to put an emotional barrier, thus making it difficult to connect with others?”

I was very surprised by the response; I received more than a hundred likes and nearly forty comments in less than twenty-four hours. Every single person who wrote a reply felt as I did. The emotional struggle of living with Sickle Cell—or any chronic illness for that matter—has far more reaching consequences than we sometimes realize.

One young man said he has a hard time asking girls out on dates because he feels he can’t get close to them. One woman wrote, when she has to go to the ER, she tells her family to leave her at the door and go home; when coping with pain, it’s too difficult for her to have family around. Some feel they receive little or no sympathy from loved ones, which naturally builds walls around those relationships.

From a lifetime of complications, pain, and hospitalizations, some have difficulty recognizing or having sympathy for other people’s pain. Because no one understands their situation, some feel as though people won’t/can’t love them enough to stick by them during the hard times.

One woman wrote, “As a mother of a child with Sickle cell, is there something I can do to prevent him from developing that wall? What could your parents have done differently?”

As I’ve thought about this subject, I realize I can’t briefly answer this in one post. I think it best to break the topic up into several smaller ones.  I feel this topic is a very important one and I want to come at it from a few different angles.

Friendship and Sickle Cell Disease

I was thinking of a recent experience, which is not at all a unique one. When I learned that I would be unable to have my hip replacement surgeries, I naturally sought comfort from loved ones. I was gravely disappointed when I went to one individual’s house. I spent three minutes talking about what I was dealing with and listened for fifteen minutes about something else entirely unrelated, at which point the topic was totally changed. Needless to say I gave up trying to talk about my situation with them.

The second individual I tried to speak with was also a let down. I spoke to them for five minutes about my news, and that was all I got out. Rather than just listening to what I needed to express, I had to listen to what he wanted to express to me.

I spoke of a similar topic in the section 17) About Friends and Family. Often, when a person hears about your latest tribulation, they simply don’t know what to say. Because they don’t know what to say, they may: 1) avoid you until the event is over; 2) avoid talking about the subject entirely; or 3) simply say nothing at all. It’s not because they don’t care, it’s because they don’t know what to say.

If you are a friend or family member of a person living with a chronic or terminal illness, please understand. Understand that your loved one is struggling to come to terms with this new crisis in their life; and when they finally choose to share it with you for the first time, understand that all your loved one wants is for you to listen. You don’t need to offer solutions; you don’t need to search for ways to fix the problem at that point; and you ought not change the subject so you don’t have to hear what’s on their mind.

What your loved one wants/needs from you is a compassionate heart and an ear willing to listen. That’s it. Just listen. You don’t have to give advice; you don’t have to say anything profound or wise. All you have to do is listen. I know from a multitude of personal experiences how extremely disheartening it is when those you most rely upon cannot provide this. I also know from personal experience how profoundly comforting it is when loved ones do provide this.

Please, be sensitive to your loved one’s needs. Please, don’t be afraid to be silent. And to those suffering through difficult trials, please be patient with the shortcomings of others.

Emotional Effects of Sickle Cell

Most of what I share is of a personal nature, but this is a bit more so. I feel as though, in some ways, I have suffered a lot of loss in my life: I’ve lost a great many close personal friendships to betrayal, disagreements, and other kinds of fallout; I’ve lost my wife and daughter in a divorce; and I lost a sister who now dwells with God. As a result of these many lost relationships, I have created an emotional barrier around myself; or in Star Trek terms, I raised shields.

I have come to realize that I haven’t allowed myself to make an emotional connection with anybody for a very long time. I am of course close to family and certain friends. However, with most people, there is a depth of emotion that I am not allowing myself to make with others in the way I once did.

I was speaking to a couple of my friends the other day about this--they are a married couple--and one of them made an observation that really stuck with me. Her comment was basically this: “All your life you have endured a great amount of physical pain as a result of living with Sickle Cell Anemia. As a coping strategy, you’ve learned how to disconnect yourself from your physical pain; you’ve had to in order to endure the pain. It’s not a stretch to think that you have applied that to other areas of your life.”

I’ve had several days to think about that, and as I’ve pondered her words, I realized that she is 100% correct. I have learned to cope with all sorts of pain--be it physical, mental, emotional, or spiritual—by disconnecting myself from it. I want to emotionally connect with people in a deeper way than what I have been allowing myself to do. Coming to this realization is a good first step.

One of my reasons for sharing this is help shed some light on an invisible complication of Sickle Cell. Living with this illness, we endure levels of pain that are unimaginable to most people. To endure that pain, and how it impacts our life, we all find our own ways of coping with it. The pain we endure not only impacts our physical body, but our state of mind as well. My point is, if I have learned to disconnect myself from my emotional pain the same way I do my physical pain, then I am betting there are others out there who have done, and are doing, the same thing. I hope by sharing this realization with you, it will cause you to look inside yourself and ask, “Am I also doing this?”

My second reason for sharing this is directed toward people who do not live with Sickle Cell. Awareness. Awareness. Awareness. People need to be aware that Sickle Cell doesn’t just affect our body, but also our emotions, our relationships, and how we interact with others. Sickle Cell Anemia impacts us psychologically more than we sometimes realizes; and I also think that often goes unaddressed and underestimated by others.

It’s important for us to take time to introspect, to ponder the ways our illness emotionally influences us in negative and positive ways. I personally am trying to look within myself and see how I can improve upon myself, upon the relationships I have, and improve upon the relationships I want to have with others. I encourage you, my readers, to do likewise.

40th Birthday with Sickle Cell

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

SIckle Cell Foot Ulcers: They're Healed!

In spite of the difficulties I'm having with my hips, some positive things are happening. I mentioned in the post, "Blood Clot No More!" that the clot in my left leg is gone. So that's good. It's been two years since my last hospitalization, and it was six years before that. But what I'm most happy to report this week is the two leg/foot ulcers that I have had since March of 2012 are 100% healed!

From June of 2010 to June 2013 I have had a total of ten foot ulcers. When at their worst, nearly half of my left foot was covered with open wounds. When I had to clean them, the pain was so bad at times that it literally made my heart hurt. To go from never having had a single foot/leg ulcer in my life, to having ten very severe ones over a three year period...it's been a challenge.

I understand now why and how some people loose limbs from wounds like these. When they appear, they can go from not too bad to VERY bad in a crazy short period of time. If a person is unable or unwilling to: 1) take the time to properly clean them; 2) endure the pain of cleaning them; 3) receive proper medical care; and 4) stay off their feet...the wounds will only continue to get worse and heal time will be lengthened.

The past two years has certainly been a trial of faith and patience. Thankfully I've had countless people praying for me, I've had the support of family, and excellent medical care. I wish I could believe that I will never have another foot ulcer again; but the truth is, it is a new complication that I don't see ending any time soon. I'm certain another wound will arise in time. But until then, I will protect my feet and legs and manage my health as best I can.

While it is true that I am struggling with the reality of needing a wheelchair, there still are blessings in my life. In addition to my wounds healing and my clot being gone, I've had very few pain crisis the past two years. This has been a gift from God. With the amount of pain I experienced with many of my wounds, it should have thrown me into a pain crisis; but it didn't. With the high amount of pain I am having in my hips, that too should be triggering more Sickle Cell pain than it has.

While the pain crises are there--in fact, I've been having a mild one for about a week now--the crises aren't/haven't been as bad as I know they could be. So like I said, some good things are happening.

I pray you can also see, acknowledge, and give thanks for all the good things in your life. I am certain there are many.

Nearly 40 Years Old with Sickle Cell

I recently had communications with a young man who told be about a "very very close friend" of his who died from Sickle Cell Disease three years ago. I am always struck hard when I hear or read of such passings. It helps reaffirm to me how truly blessed I am.

Of my 116 hospitalizations, there were many that brought me to the brink of death at a very young age. From ages 9 to 19, my health was not nearly as stable as it has been from ages 20 to 39. Many of those childhood hospital visits were nearly my last; so many in fact that I can't remember them all.

There was a huge chunk in my life (I'm guessing from ages 14 to 28) when I would have been more than happy if God had called me Home. In fact, there were times in my mid-twenties when I begged God, with tears streaming down my face, to end my life. The idea of living another day was repulsive to me for a very long a time.

By the time my 30th birthday came around, a change had occurred in my heart, mind, and soul. I realized how selfish I had been for asking what I did. There was/is much in my life to be grateful for and to live for. For example:

I have three siblings that are quite a bit older than me. Between the three of them, they have given me eleven nieces and nephews. I remember holding each and every one of them in my arms as infants. Now, nearly all of them are adults. Several are married and have children of their own. Witnessing their marriages, watching them become parents...it's something I NEVER believed I would live see.

I've had experiences and built friendships that have impacted my life in powerful and positive ways as I have theirs. Every year I grow older, I am more surprised than the last to still be here, and more grateful as well.

My 40th birthday is nearly two weeks away. 40! I never dared to dream I would still be here; and I never dreamed I would be as happy as I am to still be here. It's a wonderful blessing and I'm very pleased God didn't answer my selfish prayers to take me Home when I asked Him to; and I'm so grateful I never took my own life, as I contemplated many many times in my twenties.

I admit, the past two years have medically been the most challenging of my life. There certainly have been moments when I thought, "God, please just take me Home." But those are thoughts that quickly pass. As much as I sometimes would love to be rid of this broken body of mine, there are a great many things in life I love more.

I hope every single reader of this blog embraces the truth that life is worth living. Yes, life can be hard. Yes, our condition will/does bring many challenges; but it's these challenges that make us who we are and make us better than we were. I truly pray you each cherish your life and find joy in it.

Trials and Blessings of Sickle Cell

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

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

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

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

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

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

Sickle Cell Foot Ulcers: Nearly Healed

I am really encouraged by the state of my foot ulcers. The two newest wounds on my right foot have completely healed! The ulcers that I've had since March of 2012, they are very close to being entirely healed also; finally.

The wound that was nearly 2.8cm long as of May 1st is down to only 0.2cm. I'm hoping and praying that in a week's time, it will at last be nothing more than a memory. The second wound that what was about 2.0cm is now about 0.6cm long now. Each and every day it looks better than the last.

These two lingering wounds have been such a pain; pun intended. I know I have no cause to complain about these year long wounds. Some patients struggle with foot ulcers for ten or fifteen years! I have to say, when I read that, it both filled me dread and an appreciation for my situation.

As I've mentioned in other posts, Manuka honey has been working really well for me. I've learned that Manuka honey is a must have for treating these wounds. There are times when it slightly burns after applying the honey, but it fades after about fifteen minutes.

I am extremely grateful that an end to these lingering ulcers is at last in sight. I'm hoping--as I have many times before--that these wounds will all be healed in a month's time. I've been hoping for that for the past five months, but this time is different. This time I can see notable improvement in the wound's condition each and every day. Needless to say, that is highly encouraging.

Not Cleared for Surgery

The past four months I've been somewhat patiently waiting for my foot ulcers to heal so I could have my first hip replacement surgery. I've also been going to my various doctors to get clearance for surgery. They all gave me clearance. That is, until I saw my cardiologist ten days ago.

To make sure that my heart was/is strong enough for surgery, he ordered a stress echo test. Normally they would have a person run on a treadmill while monitoring the heart to test the heart's function and strength. Since I'm walking with a walker, obviously that wasn't possible. So they did a chemical stress test instead.

After they did an echo of my heart, they put an I.V. in my arm. Typically they give you small doses of a medication that gradually raises your heart rate. They have you hooked up to all kinds of monitors and perform another echo of the heart during the procedure.

When I was given the medication, it didn't cause my heart rate to raise, but to plummet. I experienced a heaviness and pain in my chest; it felt like my heart was about to pop out of my chest, and I had difficulty breathing. The doctor came running in, they gave me oxygen and had to halt the test very early on.

Over the past many years, my heart function has been stable at 45%. It's now 35%. Based on what happened during the test, my cardiologist can't/won't clear me for surgery. "If what happened here," my cardiologist said, "happened in the operating room, it would be very bad."

When I was told about my hips several months ago, I was told I had two options: 1) have a double hip replacement surgery, or 2) live with it until it got worse and eventually end up in a wheelchair. So when my cardiologist told me he couldn't clear me for surgery, I was...devastated.

There are many things I've prepared myself for in my life; spending the rest of my life in a wheelchair wasn't one of them. I'm having to come to terms with this reality and I find I'm having a hard time with that. Once I get my chair, hopefully an electric one, I know I will regain much of the mobility that I've lost over the past year and a half. Right now, every step with my walker is agony and physically taxing. But mentally coming to terms with being in a wheelchair is taking time. But with the Lord's help, I know peace will come.

Sickle Cell - Blood Clot No More!

Two years ago a blood clot formed in my left leg. I went from the middle of my shin to the middle of my thigh. I had no idea at the time that blood clots could get so large; I'm told they can be even larger than that. When I had the clot, my leg really swelled up and it was very painful. I was put on blood thinners and had to wear a pressure sock. The sock fits very tightly against the skin and goes all the way up to the knee. When worn, it helps to open up the blood vessels, push the blood back up the leg, and prevent and/or reduce swelling.

After about six months I was taken off the blood thinners. One year ago, an ultrasound showed the clot was half the size it was. I was told the clot wouldn't get any smaller, and that I would have it for the rest of my life.

Last week another ultrasound was done, and it showed the blood clot is entirely gone! The vein where the clot was is a bit thicker than normal from scar tissue, but the clot is gone. Needless to say, I was/am very happy about that.

During that first year I did a lot of meditation exercises where I envisioned the vein in my leg where the clot was. Then I'd envision the clot inside the vein. Then I'd envision small pieces of that clot breaking off until nothing remained of it. I don't know how much a part that process played in my clot becoming removed from my vein, but...you never know. I've been amazed by, and seen some dramatic examples of, the power of meditation. I also credit God and the prayers of my friends and family. Every little bit helps.