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.