In Denial of Your Sickle Cell?

When it comes to coming to terms with a chronic or terminal illness, I think we go through the five stages of grief the same way a person in mourning does. We experience anger, depression, bargaining, denial and eventually acceptance. Not everyone goes through these stages the same way or in the same order. For some, it may take years to pass through a single stage. Other people may, by choice, never move past one stage or another, like anger.

When it comes to living with a chronic illness, I feel the sooner we come to accept its reality, the better we will be. Not learning about our illness and how to best take care of our health is dangerous, and in truth it can be fatal.

Living with Sickle Cell is most certainly a challenge. It can be frustrating, maddening, angering, and depressing. It’s filled many days of pain, hospitalizations, and hours of doctor’s visits. It requires we manage our stress, eat healthy, keep ourselves well hydrated, and we always get the proper rest. It places many demands on us that most people can’t begin to understand.

Having said that, LIFE IS STILL WORTH LIVING. You can live well with Sickle Cell. I admit, I have days when I say, “Lord, just take me now.” But those days pass, laughter returns, and I live a fulfilling life. Though much of our illness is out of our control, much of it is in our control. It simply requires disciple and self-restraint.

If any of my readers out feel as though ignorance is bliss; that not learning about your illness is preferable to knowing, I invite you to change how you think. With knowledge comes power. The more you know about your illness, the more control you have in your life. 

For instance, I live with a lot daily pain from my back, hips and Sickle Cell crises. However, I’ve learned through study and experience what helps relieve that pain and what makes it worse. As a result, I have a certain measure of control over that pain. Of course there will always be times when the pain from a crisis is worse than other days; but with the knowledge I’ve gained over m life, I can cope with it and stay out of the hospital far more than I ever did as a teenager.

I pray each of my readers chooses to have faith in a power greater than you; chooses to be optimistic about your future; chooses to take care of your body, mind and spirit the best way you can; and chooses to believe you will live a long and happy life. 

Be at peace my friends.

Sincerely,   
   Jon

Yet Another Sickle Cell Foot Ulcer

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

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

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

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

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

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

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

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

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

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

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

The battle wages on.

Symptoms of Low Hemoglobin in Sickle Cell

For the first time in three years and ten months, I was hospitalized last week. My hemoglobin dropped down to 4.1. It’s kind of my fault that my blood level dropped so low. I knew for a couple weeks that I needed to go get my hemoglobin tested, but because I couldn’t stand the thought of possibly being hospitalized, I procrastinated. I shouldn’t have procrastinated.

For me, there are five tell tale signs that my hemoglobin is really low.

1. Ringing in the Ears. When my hemoglobin is low, I have a faint and constant ringing in my ears. Most of the time I’m not aware of the ringing; it’s only when there isn’t much noise going on around me that I hear it. Sometimes it is loud enough to hear over the TV.
2. Hear My Heartbeat in My Ears. Any kind of physical activity—something as light as putting on my cloths—my cause me to hear my heartbeat in my ears. After a few minutes, the sound will go away; but sometimes it takes some time.
3. Increased Heartbeat. Like #2, physical activity as light as getting dressed can cause my heart to race. Sometimes it feels like my heart is going to pound out of my chest; but it’s usually that bad only if I’ve performed some sudden physical exertion.
4. Extreme Tiredness. Becoming tired easily is just part of having Sickle Cell Disease. But when my hemoglobin is low, I am super tired all the time. 
5. Mental Cloudiness. When my blood is low, I’m just not all there. Focusing, concentrating, and holding my attention on anything is difficult. I will also have a hard time collecting and expressing my thoughts.  

For all my readers who may be living with Sickle Cell Disease I say, don’t procrastinate listening to your instincts. You’ve been living with your illness your entire life. You know what symptoms mean what. You know when it’s time to have your blood checked. Listen to your body and life experience and don’t wait too long like I did. I will do my best to heed my own advice in the future.

Managing Sickle Cell Disease

Last week I had a couple of doctor appointments. Both doctors asked me a very similar question. "In the whole time I've known you, you've not been hospitalized with a pain crisis. How do you manage your illness so well?"

I first asked, "What do you mean when you say 'pain crisis'?"

"Pain that is so out of control that you have to be hospitalized."

This is what I told him. First, I'm not employed. So not having the emotional and physical stress of having to go to work every day plays a huge role in staying out of the hospital. I also do my best to avoid stress. Prolonged intense stress is a certain trigger for a pain crisis.

Secondly, I do my best to drink as close to a gallon of water each day as I possibly can. When I fail to drink enough water for prolonged periods of time, the result is fatigue and sickle cell pain.

Third, I make sure I eat healty and get the amount of sleep my body needs. For me, nine to ten hours is what my body needs. If I fail to get that for more than a few nights in a row, a pain crisis will descend upon me very quickly.

Fourth, I know my limits and don't push myself. When I was a teenager and in my early twenties, too often I burned the candle at both ends. I would over tax myself by playing and working too hard. The result was frequent hospitalizations. When I gained some wisdom, I learned to stay home when my body told me I needed to.

Fifth, meditation is a valuable and important tool for me. When I do have a severe pain crisis, controlling my breathing, heartrate, and stress play a big role in staying out of the hospital.

Sixth, having oxygen at home also helps. Like I wrote in "Oxygen Use and Sickle Cell," I have an oxygen consentrator. I primarily use oxygen at night when I sleep. But when I'm having a severe pain crisis, I will use it 24/7, often for several days. Having that added oxygen when in crisis helps. This, and all the other things I've mentioned, won't by themselves keep me out of the hospital. But together, every little bit helps.

I put a lot of mental energy into keeping myself healthy. Finding the necessary balance in life between doing the things we need, want, and have to do, can be a struggle. Even when we do find that balance, our illness is unpredictable and hospitalizations still happen; sometimes for no good reason at all.
I hope this information is helpful to somebody. Sickle Cell is a difficult illness to live with. But with discipline and wisdom, it can be managed fairly well. I pray you find that balance in your life.

Red Light: Less Pain from SC Foot Ulcers

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

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

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

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

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

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

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

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

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

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

I’M SO EXCITED!!!

Sickle Cell Wound Prevention with Red Light

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

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

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

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

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

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

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

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

Setting Goals and Sickle Cell

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

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

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

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

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

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

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

I hope your New Year is great.