"How Do You Manage Sickle Cell So Well?"

Last week I had an experience similar to the one I shared in my post, "Top 1% with Sickle Cell." Wednesday I saw the doctor who prescribes my pain medications. As usual, the student doctor came in first. He sat down and asked me a question, which I didn't quite understand and asked him to rephrase it. Basically, this is what he said:

"I work in the ER. I probably see Sickle Cell patients 2-3 times a week. They come in, in pain; they leave in pain; they are hospitalized because of pain. You are on relatively low amounts of pain medication; you haven't been hospitalized in almost a year; and your health is incredibly stable. How do you manage your illness so well?"

My response was, "I eat healthy; I drink plenty of water; I get the amount of sleep I need. I don't smoke, drink or do recreational drugs or abuse the medications I have. I have an amazingly supportive family. I manage my stress. I know what my limits are, and I live within those limits. I listen to my body. I know what it takes to stay as healthy as possible and out of the hospital, and I do those things."

This doctor was absolutely speechless. He literally sat there at a loss for words. He went on to say, "These patients I see, they are younger than you; in their 20's. Even though you have a more severe form of Sickle Cell, you are in your 40's and far more stable. I can't believe how well you manage your illness."

I couldn't help but be moved by his level of awe. It was quite flattering. I told him about my blog and gave him the web address. We went on to say:

"I am SO GLAD glad to have met you. I now have something to tell my patients; and I can give them your blog."

My purpose in sharing this experience is not to boast, but hopefully inspire. Yes, living with Sickle Cell really stinks. There are a great many things we cannot enjoy without severe consequences. It is easy to feel like we are missing out on life, fun, and enjoyment. But I assure you, there is much life to live, fun to be had, and enjoyment to....enjoy. We simply have to use restraint, know our boundaries, and do what is necessary to stay healthy.

I encourage you to learn from your own experiences. Listen to what your body tells you and take care of it by: eating healthily, getting the amount of rest you need, and drinking plenty of water. Abstain from harmful substances. Manage your stress. Find hobbies and activities that bring you joy. Manage your illness as best as you can. Yes, even when you do all these thing, you are still going to be hospitalized, experience complications and have pain crises. But you can reduce how frequently you experience those things by taking care of your mind and body.

Be at peace my friends. May God be with you.

Life IS Worth Living!

Surviving My Latest Sickle Cell Foot Ulcers

Around the first week of March, yet another foot ulcer broke open. In a previous post I wrote about zinc sulfate and how taking it helped my wounds heal more quickly. When that wound healed, I continued taking zinc sulfate in the hopes that it would prevent new wounds from forming. Sadly, that did not happen. Though this newest wound is not healing near as rapidly my last one did, I am, however, not suffering with as much pain.

When I get a new wound, there is usually a month of sleepless nights because the pain is so bad. Thankfully, I haven't gone through that nightly torture this time. In fact, the pain has been rather minimal. So, while this wound is not healing as quickly as the last one did, the pain has been drastically lower than normal. Is this reduced pain a result of taking the zinc sulfate? I don't know; but it has me wondering.

I know I have a great many posts about my foot/leg ulcers; but there is reason behind my madness. For any readers that may be suffering through the same thing, I like to share what is and isn't working for me. It is my hope that something I write about may benefit someone else and allievate a little suffering. These wounds can be a depressing and painful complication to endure; so any tidbit of info that may help, even in the slightest degree, is a good thing.

As I frequently say: be strong my friends. Find joy where you can. Life is worth living.

Until next time.

"Top 1% with Sickle Cell"

Yesterday I saw my hematologist. Sadly he is moving to a different hospital and he will no long be my doctor. As we spoke, he told me, "I know you have your problems and ups and downs, but really, you are the top 1% in regards to stabilized health in all the Sickle Cell patients we see here. You have a great handle on how you manage your health."

Though that made me feel good about myself, it also makes me a little sad. The support I get from my family is a HUGE factor in how and why I am able to keep my health stable. So what do I do to maintain my health?

1. I am not employed. Though there have been times when I did work, for the most part, I have not pursuited a career. I had ambitions and goals to work toward a career, but my health continuously got in the way. In regards to how this impacts my self esteem, I wouldnt recommend it, but in regards to staying alive and out of the hospital, it is what I needed to do.
2. I keep my stress down. Part of the reason why am not employed is because I need to keep my mental and physical stress as low as possible. I learned from my college years and the times I did work, what stress does to my body; it short, it always puts me in the hospital. I learned long ago, in order to reduce pain crises and hospitalizatiions, I have to avoid stressful situations and people.
3. I avoid negativity. I have always been highly sensitive to negative energy in all its forms. Negative people; negative speech; friends who have a lot of drama in their lives....these types of things dramatically effect me emotionally, spiritually, mentally, and physically. I have had to walk away from many friendships because of the amount of drama and/or negativity they brought into my life. Sadly, for my own survival, that is what I have had to do more than once.
4. Proper sleep. For me, 9-10 hours of sleep is what I need. I can go a couple nights with less, but if it goes on too many nights, I suffer the consequences: which usually takes the form of pain crises or hospitalization.
5. Proper diet. Eating healthy and balanced meals is a must. Eating when my body tells me I am hungry; carrying snacks with me always; and taking the time to eat properly....all are musts.
6. Staying hydrated. I take water with me everywhere I go. As I mentioned in my last post, if I go too many days without drinking sufficient amounts of water, I pay the price.
7. I don't smoke, drink, or use recreational drugs. This is largely due to my religious convictions, and also due to survival. I had a conversation once with a person who, "Had an aunt who died at the age of 30 from SCD." When I asked what kind of lifestyle she lived, he told me, "She drank, did drugs, and smoked." All of my major organs are negatively impacted by SCD; I can only imagine where my liver, kidney or lung function would be if I smoked or drank. I probably wouldn't be alive to write this post.
8. I listen to my body. When I am tired, in pain, or not feeling well, I don't push myself and I stay home. The times when I said, "Screw it, I am going to go out anyway..." I have always, always suffered for it.
9. I am disciplined with my pain medications. For over 20 years I have had a daily need for pain medications. I always strive to take as little as possible. I work hard at avoiding building up tolerances to what I take and forming addictions to my medications. Thankfully, with the Lord's help, I have been successful in both these areas. In fact, I have reduced my pain medication intake by more than half over the past year.
10. I know what I have to do to stay healthy, and I do it. This is the biggest thing. Living with Sickle Cell Disease is not a fun experience. It requires a lot of strength to endure the things we do. I give thanks to God for helping me get through each day. Without my religious convictions and family support, I know I would not be the person I am and most certainly would not be alive.

I don't list these things to brag. I share this to help anyone who may be struggling with SCD, or any illness. I encourage my readers to: stay strong to the convictions you have; make the choices that are sometimes hard to make; do what you must do to live a long and healthy life; and most importantly......choose to be happy. 

Life with Sickle Cell is hard, but life IS worth living. 

Until next time my friends.

Hydration and Sickle Cell

Though I have spoken about this previously, I wanted to touch on it again. Drinking a gallon of water daily, or as close to it as you possibly can, plays a big role in preventing pain crises. Anyone who has ever tried to drink that much water every single day of their life knows it is not an easy challenge. From childrenhood, my parents (and doctor) instilled in me the importance of taking water with me everywhere I went. When a kid, this meant taking water to school. Sometimes that required special parent teacher conferences to get the necessary permission to take water to class.

As an adult, it has been a life long habit of always having water with me. Though I like to think I do a fairly good job of staying hydrated; I certainly have my spells when I know I am not drinking enough. For me, the winter is the hardest time of year. During the colder months--though I don't like ice in my water--I still find it hard to drink as much water as I should. If I allow a week to pass where my water intake is far below what it should be, I soon feel the affects. For me, cracked or dry lips and dark urine are tall tell signs that I'm not drinking enough water. If I continue to neglect my health in this way, I will often have headaches from dehydration. I would suggest not waiting until you manifest these symptoms; if you do, a pain crisis will be right around the corner. Just drink a little bit of water every hour.

If I find that I have gotten out of the habit of drinking the amount of water I know I need too, I may set a timer on my watch or phone. This helps me remember to drink half a glass of water every 30 minutes. Or I may set it to go off every hour, and drink a full 12 oz glass. 

I know some people have a hard time with the taste of water. Many people infuse their water with lemon juice, or other fruit to give it flavor. Water enhancers like Mio work for other people. I am a straight water with no ice person. Recently my family bought a water filtration system for our home, which has been wonderful. Before that, however, I used Zero Water filtration system. I previously used Britta water filters; but when I moved to a different area, I still found the water distasteful and discovered Zero Water worked better for my situation.

There are many ways to make water more desirable. Find something that works for your wants, needs and taste, and develop the self-discipline to keep yourself well hydrated on a daily basis. I promise, if you do, you will experience fewer pain crises and feel better.

Stay strong. Stay positive. Stay hydrated, and believe in the bright future that is yours.

Low Hemoglobin & Sickle Cell

Low hemoglobin is just a byproduct of living with Sickle Cell Disease. About ten years ago, my hemoglobin level hovered between 5.0 and 5.8. Previously it was in the area of 7, if I recall correctly. Then my doctor at the time, Dr. Bedros, put me on a drug called Procrit; an injection that helps improve the production of red blood cells. While on that drug, my hemoglobin went from 5 to 9. The difference in how I felt was day and night. Though I disliked sticking a needle in my stomach three times a week, it was worth it to have the improved energy level.

The thing about Procit is, it is very expensive--$1000 or more for a month supply; its expense made the process of getting the prescription a complicated one. Consequently, there were a lot of issues with my insurance. When Dr. Bedros retired and I began seeing my current hematologist, I received a lot of pressure to stop taking Procrit. Apparently, Procrit is not generally used in the treatment of SCD and there aren't any studies that prove it's beneficial to Sickle Cell patients; even though I was living proof it did. Unfortunately, over the past two years, Procrit hasn't helped as much as it once did and my hemoglobin has averaged 6.

As of January, my insurance informed me they would no longer will pay for Procrit. Where I previously was very resistant to getting off Procit, I slowly open to it; namely because the medication wasn't helping the way it once did, and my insurance left me with little choice. Thankfully my doctors and I had begun weaning me off Procrit before I found out my insurance was no longer going to pay for it.

I have now been off the drug for a month and my doctor is closely watching my numbers. Unfortunately, even with the Procrit, my hemoglobin seems to be returning to where it was prior to Procrit; that being 5.1 when last tested. I have a feeling this is going to be my new norm.

For me, when my hemoglobin is in the low fives, I have less energy; I have a mild ringing in my ears, and I often feel mentally cloudy. I am hoping my body will adapt to this low blood count and I wont always feel as tired as I presently do. With Sickle Cell, however, many things are just the norm. My doctor has told me some patients in Africa walk around with a hemoglobin level of 2. That blew my mind. When I was eighteen my hemoglobin dropped to 2. I was passing out as a result.

There are so many diffferent virients of SCD; additionally, the way Sickle Cell impacts each patient can widely vary. What is typical for me may not be typical for another patient. I just felt like sharing what my experience has been lately with my hemoglobin level. Sickle Cell patients are constantly having to adjust to new realities. I feel a hemoglobin level of 5 is my new reality. It is what it is and I continue to plug along on this journey called life as best I can.


Related Posts:
•Symptoms of Low Hemoglobin in Sickle Cell
•Procrit & Sickle Cell
•Various Forms of Sickle Cell

Sickle Cell Leg Ulcers & Zinc Revisited

One month ago I wrote that new wounds broke open on my foot. The process that is typical for me goes as follows: there will be about six weeks of the wound getting worse; another six weeks of it staying about the same; then another month or two of healing. Three to four months has been the average time of my wounds; though I did have two last well over a year.

As I mentioned in previous posts, I began taking zinc sulfate, 220 mg--once a day--as directed by my doctor. However, I decided to try something different this time around. When these newest wounds broke open, I used Manuka Honey on them; additionally, I upped my zinc intake to 220mg twice a day. But to prevent the nausea it previously caused me, I used a pill cutter to cut the tablets in half, and I took half a tablet four times throughout the day. This worked in preventing the nausea.

So, it has been a month and a few days since my wounds broke open and already they have gotten as big as I think they are going to get, and the have begun healing. So in one months time, my wounds are well on they way to healing. This is a DRAMATIC difference.

Eventually, due to the wounds size, location, and amount of pain they caused, I had to stop using the Manuka Honey and revert to the tried and true Silver Sulfadiazine Cream; which is what I am still using. Based on how quickly my wounds are healing, I am hoping they will fully heal in another two to three weeks. We shall see.

My point in sharing these things is this...it is important to follow doctor's advice. But it is also important to experiment with things yourself, follow your intuition, and see what works for you. I am really encouraged by what has taken place this past month. Don't get me wrong, as there always is with these wounds, there is a period of time where the pain they cause is excruciating. The pain interrupts sleep, daily activity, and can be quite depressing. However, that phase of my wounds seems shortened this time around because I tried something different.

For me, unfortunately, I think the recurrence of these wounds is going to be a life long problem. Over the past six years I probably have had nearly 30 different separate wounds. I don't think I am going to stop having foot ulcers. So, the only thing I can do is consult my doctors, follow my own instincts about how to treat them, and take care of them the best I can.

If you have problems with sickle cell foot ulcers, find what works for you. Experiment with different things. Research what works for other patients. Pray for guidance. Get medical professional input and treatment. And most importantly, try to stay positive.

Zinc Sulfate Update

For about two months I have been foot ulcer free! With the approval of my doctor, I began taking 220mg of the supplement zinc sulfate on a daily basis. As a result--like I commented in a previous post--I noticed a marked improvement on the healing time of my wounds. I really felt the zinc helped the several wounds I had,  heal faster. It was my hope, if I continued to take the zinc sulfate on a daily basis, that it might prevent new wounds from forming. Unfortunately, this is not the case.

There have been spots--one on my right foot and one on my left foot--that I have been concerned about for nearly a week. Though I do my best to protect my feet, and keep them warm, one of those spots broke open yesterday into a new wound. Right now it's small, but they usually start out that way.

The info I read on the internet had SCD patients take 220mg of zinc sulfate three times daily. My doctor felt that was too much, and so did my body. So far, my experience has been, if I take it twice a day, I get nauseous to the point of vomiting; I only tried three times a day once; I was sick for two days. Taking it only once a day--usually at night before bed--I have not experienced any nausea.

If you are suffering from foot ulcers, ask your doctor about zinc sulfate. Maybe it will help you.

Retinopathy & Sickle Cell Disease

Retinopathy (or eye problems) can arise as a result of Sickle Cell Disease. I read of one person who literally woke up blind one day. For this reason, it is VERY important to have your eyes examined every year by an eye doctor (ophthalmologist).

Ophthalmologists are eye doctors, which is different than a optometrist, who is not a medical doctor. Though they put a solution in your eyes, which causes them to dilate, the exam is painless. I admit, until a couple months ago, I had let this important yearly exam slide. It had been a several years since I had my eyes checked. Thankfully my hematologist stayed on me until I got my eyes examined. And I am happy to report a clean bill of health, as far as my eyes are concerned anyway.

Living with Sickle Cell Disease is kind of like owning a car; there is a lot of maintenance involved. Trust me, I know how tiring it can become always having to go to the doctor and have this or that test done. But taking care of your body is important; and these little checkups are important.

I hope you, my reader, has a wonderful Thanksgiving Day.

Until next time.

Jon

Zinc Sulfate & Sickle Cell Leg Ulcers

I recently did some research on the internet and read several studies and articles about zinc sulfate. Apparently, these studies indicate that taking 220mg of zinc sulfate three times a day can significantly improve healing time.

Like iron and other minerals, proper zinc levels are important to our body's normal function. Sickle Cell patients are often zinc deficient. This deficiency can have many negative side affects. Among other problems, this deficiency may be one of the causes of Sickle Cell leg ulcers.

Intrigued by the studies I read, I asked my doctors about taking zinc sulfate. My doctor recommended I take 220mg once a day, rather than three times a day. It's been about a week and a half since I started taking it, and I have already noticed an improvement. There really seems to be an acceleration in healing. I am cautiously optimistic that perhaps I have found one more thing that makes a subtle difference.

So my friends, if you too are struggling with Sickle Cell leg ulcers, ask your doctor about taking zinc sulfate. Even if it helps just a little, it is worth it. But here is a tip, be certain to take it with food. MedMD said it's best to take it one hour before eating or two hours after eating. I tried that. It made me nauseous. Taking it with food, however.....no nausea. So take it with food.

Best wishes.

Night and Pain: Sickle Cell Foot Ulcers

Well, the good news is the set of ulcers on my right foot that broke out on my birthday have totally healed!!!! The bad news is I have seven new ones on my left foot. The first broke open around the end of August. As is typical, the skin breaks down around that first wound, causing several others to break open. They kind of look like a chain of islands.

There are several things I find odd about these wounds. The most odd thing is the fact that they seem to hurt the most from around 9pm to 5am. When my ulcers are at a certain stage--the stage they are presently in--I am awaken up one to three times during the night because of the burning pain. I have to get out of bed, clean them, put some lidocaine on them for the pain, and redress them.

I often wonder if this is typical; if other patients who struggle with ulcers experience the same thing. It's can be difficult to remain positive when one is extremely sleep deprived. But, I am doing my best. I know these wounds will heal eventually.

Ink Sketches

Most of my art has been done with pencil. I've used ink, oil pastels, and watercolor pencil just a little bit. The past couples months I've become excited to experiment with pen. So what follows below are sketches done with ink pens of various types and sizes.

Artists.pixelovely.com & Quickposes.com are websites that allow you to do timed exercises. You can set a timer for two minutes, for example, and at the end of two minutes, another picture will appear on the screen. So what you see at the bottom of the above picture are timed two minute sketches.

 This was drawn with a copic drawing pen that is sepia colored. I drew it over the course of about an hour and a half.

 The above is another set of timed 2 minute sketches.

I'm trying to learn how to draw different textures with pen. So I  drew these boxes with different textures.

 Above are more timed sketches.

Another Blood Transfusion for My Sickle Cell

I can't believe it's been two months since my last post. It's easy to get distracted by life. On August 11, 2016 I had to receive another blood transfusion; two units. January of this year was the last time I needed to be transfused. Before that it was 2011. I have been fortunate in my adulthood to be able to go, on average, 4 years between hospitalizations and blood transfusions. It has me a little concerned that the frequency seems to be speeding up in my "older" years. Which I suppose is natural. I know I have nothing to complain about; many sickle cell patients are hospitalized far more often than this.

I sometimes worry what the future of my health is going to be like. How rapidly will my heart and kidney function drop? Will I need more frequent blood transfusions? Will I continue to have foot ulcer after foot ulcer? I do my best not think about things which are both unknown and out of my control. What will be will be and I will deal with those things if and when they come. Worrying about it isn't going to change anything. The only thing I can do is what I always do: drink plenty f water; eat healthy; get the proper sleep; know my limits; take care of my body; and keep myself mentally and spiritually healthy.

Whether you are healthy or live with a chronic illness, life is full of unknowns and uncertainties. We just have to deal the our challenges as they come, stay positive, and hold on to our faith. I pray each of you find things in life that help you find joy and fulfillment.

Until next time...may peace be with you.

Return of the Sicke Cell Foot Ulcer

My recent move has kept me distracted from making regular posts. Fortunately, during the most active part of my move, I was free from all foot ulcers. In total, I went about five months without a wound. Unfortunately, on my birthday, a new foot ulcer broke open. It’s always a bummer when I get a new wound. However, I felt very blessed that I did not have any wounds to take care of during my move.

In all, I have seven wounds on my legs right now. Six ulcers are on my right ankle, and one on my left; the one on the left ankle just broke open a few days ago. In spite of this, I count my blessings and give thanks to God.

I’m grateful that I didn’t have any wounds during my move. I’m grateful the Lord gave me a much needed break and allowed me to go five months without having any wounds. I’m grateful that the wounds I have right now haven’t been as painful as others I’ve previously had.

These wounds can cause so much pain and with it depression. I have accepted that these foot/leg ulcers probably are going to be a recurring problem the rest of my life. All I can do is take care of them the best I know how and hope God gives me an occasional break from having the wounds—like He recently did.

I try to look at the recurrence of these wounds like I do every other complication that arises in my life; “things could always be worse.”

Stay positive my fellow Sickle Cell Warriors. Life is worth living. There is joy in life. God loves you. 

Sickle Cell and Living Well

I'm stating the obvious, but the name of my blog has changed to SickleCellandLivingWell.blogspot.com. I was confronted with some trademark issues with my previous title; consequently, I changed it to the above.

Since it's been a few weeks since I last posted, what else is new in my life? Mainly, I just turned 43 years old. That's big. When I was in my twenties, I couldn't imagine being thirty, and certainly had no desire to live that long. But life has a way of changing your perspective, and when I turned thirty, I couldn't be happier. Thirteen years later, I am just as happy to still be alive as I was when I hit the thirty year mark.

Recently, I've had several different people comment to me how at peace I always seem. I find such comments interesting. Peace in life is something that was once very far away for me. I give thanks to our Heavenly Father that He has prolonged my life. I am even more grateful that I am grateful that He has prolonged my life. Additionally, I'm thankful that He has helped me replace the turmoil that once existed inside of me with a prevailing tranquility.  That's not to say I don't have times when I get angry or depressed, because everyone does. But for the most part, peace permeates my life. That prevailing peace comes in part because I work hard to maintain it.

Peace in life is such a precious gift. For me, it is one of the biggest keys to keeping myself as healthy as possible. I pray you each safely traverse the troubled waters in your life, and l land safely on the shores of personal tranquilty.

Green Eggs and Sickle Cell

This was a poem written for me by a couple of friends. I loved it so much I knew I had to post it on my blog, with their permission of course.

"Green Eggs & Sickle Cell"

I do not like sickle cell, no I do not, not with a fox, not in a box,
I do not like it, not with a mouse, not in a house,
I do not like it, now, live real nice despite the sickle cell splice,
not in cold weather or ice,
nor in November with pumpkin spice,
but live real well despite sickle cell, make rhymes I do really well,
for the blog about sickle cell, for Jon, our friend, with the the smile so swell,
until next time, when we make our next rhyme, for the blog about sickle cell.

A poem by Rachel & Vico Zuniga

Change of Blog's Name

Forgive me for not posting recently. I have been--and still am--in the middle of a move and have been quite distracted.

For your information, due to trademark issues, I will soon be changing the name of my blog to: SickleCellandLivingWell.blogspot.com. To my few faithful followers, I hope this doesn't provide any confusion.

Grateful with Sickle Cell

For nearly four years straight, I have struggled with constant foot ulcers. One would heal, another would pop up and take an addition 3-6 months to heal. It was a depressing cycle; one that I sometimes felt was never going to end. THANKFULLY, for the past five months, I have been foot ulcer free!!!

There are so many things we take for granted, like wearing shoes. I wasn't able to wear normal shoes for almost five years. Its such a joy to be able to put on socks and shoes and not be in agony. Who would have imagined that wearing shoes could bring such a pleasure.

My feet have tons of scar tissue; they kind of look like leopard print socks. They also become dry very easily. My wound doctor suggested I use Viniferamine Skin Renewal Cream.  It is the best skin cream I have ever used and I have converted my entire family to it. It does not leave you feeling oily, and keeps my skin moist longer than any other cream or lotion I have used.

As you can tell--other than plugging the above mentioned skin cream--this post is just to share how happy and excited I am to be foot ulcer free for five months. I pray it lasts.

Sometimes, with all the complications Sickle Cell throws at us, it can be easy to become depressed; to feel as though there is no hope things are ever going to improve. But there is always hope. Some trials last longer than others. The only thing we can do is cope with them the best we can and keep a positive outlook. Finding things that bring joy to help counteract the negativity of our illness is a must for our mention, emotional, spiritual and even physical health. I hope you, my readers, find things in life that bring you joy. Like wearing shoes!

New Pages & Photos Added

Last week I decided to include samples of my artwork, sushi making skills, and my newest hobby of playing a mountain dulcimer. Obviously these things have little to do with the day to day struggles of living with Sickle Cell Disease. My purpose in sharing these photos is to show there are many things in life that bring joy to our souls. Obviously, not everyone likes sushi, art, or poetry. I'm simply sharing my interests in hopes that it will inspire you to find interests and talents of your own.

Sickle Cell can be a brutal illness to live with. I feel it is vital to combat the negativity it brings into our lives with wholesome, enjoyable recreation. When able, use your time to discover and explore new things about yourself. As you do, you will find a new measure of happiness.

Sushi Video

This is a video of my sushi flambe experiments. I had the song "Fever" with it, but YouTube censored me and removed the audio track.

Pink Roll

I call it a Pink Roll. It has imitation crab on top.

No, all this food is not just for me. I had a friend over and we stuffed ourselves with sushi.

(Please forgive the out of control hair)