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)

Fire Roll

This roll has raw tuna on top, but I sear it by adding a liquor and fire. 

 This is a blueberry roll that has a spicy honey sauce on top.

Baked Lobster Roll

Baked Lobster Roll

Spicy Tuna Roll & Lobster Roll

Caterpillar & Rainbow Rolls

This is Rainbow Roll.

This is called a Caterpillar Roll.

Dragon Roll

These are different versions of "Dragon Rolls."

Yoda #2

 This was done with oil pastels. Yoda is my favorite Star Wars character. I have several drawings of Yoda. I think was my third color drawing of him. I actually sold this one recently.

Yoda #1

This is one of the first color drawings I did. It was drawn with a single watercolor pencil. The background was done with a black sharpie.

The Storm

This didn't scan very well. It was a sketch drawn while I was having an intense pain crisis. It represents the pain of a Sickle Cell pain crisis.

Optimus Prime

To date, this is the largest thing I've drawn. It measured 36" x 48".  The black background is sharpie marker and the rest is done is pencil. It was a gift for a friend. Every time I look at this photo I'm a little sad I gave it away. Who doesn't love old school Optimus Prime?

Natalie

Another pencil drawing of another friend.

Kali

This is a pencil drawing of a good friend of mine named Kali.

My Grandmother

This is a portrait of my grandmother when she was pregnant with my mother.  

Yes, they are caucasian. I was adopted.

Eloho

This is a pencil drawing of a girl named Eloho.

Dave & Trish

This was drawn as a wedding gift for my nephew and his then fiancé. The sky and clouds are done with charcoal and the rest is done with pencil.

Mountain Dulcimer @ 2 Months

Day 3 of My Mountain Dulcimer

New Interests

Regardless if you are healthy or living with a chronic illness, it's important to find things that bring distraction and enjoyment. Recently I felt the desire to learn to play a musical instrument. After doing some research and watching too many YouTube videos, I decided on the Mountain Dulcimer. I had never heard of nor seen this instrument before, but when I found it on YouTube, I was captivated by it. In time I found one that fit my budget and began playing it the day it came.

I've had the instrument a couple of months now. I practice for at least an hour a day on average 4-5 days a week. Frequently, the hours fly by, and I find myself lost in this new pursuit. It truly is bringing a great amount of enjoyment.

For me, whether it's writing, drawing, or learning to play an instrument, my various hobbies have always helped to: distract me from pain; keep my mind active; provide needed distractions; and allowed me to feel as though I'm growing as a person in new ways.

By exploring new interests--or encouraging your loved one to explore new interests--you may a new source of joy in life.

Sleep and Sickle Cell

Sleep. We all need it. Getting the proper amount is vital to everyone’s health. When you live with Sickle Cell disease, however, getting the amount of sleep your body requires is especially important.
I remember when I was about seventeen years old and tired all the time. I went and saw my Sickle Cell doctor and told him how tired I always was. He asked how many hours of sleep I was getting. I told him eight hours every night. His reply was simple, “Get more sleep. Your body might need nine or ten hours of sleep.”

“Ten hours!” I exclaimed.

This seemed so excessive to me. Besides, two more hours of sleep meant two less hours of fun with my friends or doing what I wanted. But sure enough, ten hours of sleep is what my body needed, and has needed most of my life.

It can be a challenging thing to discipline yourself to make sure you get to bed when you need to so you get the sleep your body needs. Speaking personally, if I go more than two days with less than ten hours of beauty sleep, a pain crisis may be triggered; or it will take me several nights before I feel like I’m back to normal.

If your son or daughter has SCD, try not to label them as “lazy” if they need more sleep than what other kids might need. Truly their body has more going on inside than most, and they need that extra amount of sleep to stay healthy. Or if your child is fighting you about getting the rest they need, try to help them understand the benefits of getting the proper amount of sleep.

As I’ve said many times, living with Sickle Cell has many challenges. However, even though you have this obstacle, you can still live your life and do many great things with it. So give your body the hours it needs to rest, and enjoy your waking hours as much as possible.

Mortality and Sickle Cell Disease

On the Sickle Cell Warrior Facebook page, somebody recently asked, "How do you hang on to hope and faith when we are constantly reminded of our own mortality?" I thought it was a good question and felt like talking about it.

People who are healthy from birth generally have a sense of invulnerability; they tend to feel they will live forever and nothing can harm them. Often, it's not until later in life--40's or 50's--that they come to the realization that they can be hurt, they are in fact mortal, and will one day die.

When you are live with Sickle Cell Disease the opposite is true. Between the constant hospitalizations, chronic pain, and all the complications that come with this illness, you learn at a young age that you can be hurt and you are very much mortal. It can affect one's psyche in deep and profound ways.

I know in my life I have, at times, felt:

• Cheated out of a "normal" life; 

• As though I am missing out on fun and good times with friends;

• Like my life is going to end much sooner than my friends;

• Depressed about my circumstance;

• Angry about my limitations;

• Helpless and a slave to my body;

• Hopeless that things will ever improve;

There were times in my life when many of these fears and frustrations crippled me from having hope and ambition. Depression and suicidal thoughts plagued my life through most of my 20's. Antidepressants have, at times, played an important role in my mental health. But mostly, the source of my greatest hope, is and has always been my faith.

Aside from my religious convictions, there is much I do to combat the negative thoughts and feelings that can easily crop up. For me, keeping my mind busy is of HUGE importance to my mental, physical, and spiritual health.

• Finding new hobbies;

• Serving in my church and helping other people;

• Completing and starting new projects;

• Reading and writing;

• Setting goals;

• Meditation;

• Discovering new ways to challenge and expand my intellect;

• Finding wholesome activities that allow me to grow as a person;

These are the many of the things that help me counterbalance the negativity my illness brings into my life. My faith in Jesus Christ and other religious views are what infuse me with hope. For me, faith in a Higher Power is only part of the recipe. I also have to have good things to occupy my time and good people to help add fulfillment to my life. 

Whether you live with an illness or are healthy, nobody knows how much time they have on this earth. So do your best see the beauty in your life. Gravitate towards good things, and good things will happen.

Living a happy life with Sickle Cell Disease can be a challenge, but it is achievable. 

Healing Energies and Sickle Cell Disease

For the past two months I have been feeling more awake, alert, physically energetic, and overall better than I have in more than three years. I feel as though a fog has been lifted from my mind and a weight lifted off my body. I want to share with you what I’ve been doing differently, so please, keep an open mind.

Though modern medicine has kept me alive for 42 years, I do believe there is value in: acupuncture, acupressure, Eastern medicine, healing energy, and other alternative medicines. Meditation, for example, is a powerful tool in my life that allows me to manage my pain and reduce my stress. About two months ago, I read the follow books:·    

•  “Chakras: Awaken Your Internal Energy” by Veronica Baruwal
• “5-Minute Chi Boost – Pressure Points for Reviving Life Energy, Avoiding Pain and Healing Fast” by Sifu William Lee.

The first book talks about the seven energy points in your body called chakras. Among other things, the author details where these chakras are located and how to stimulate them through meditation. The second book is basically an eighty-page instruction manual on how to stimulate various pressure points on your body. The author describes how to slap and/or tap various pressure points, thus allowing your body’s energy (Chi) to flow properly. In both these practices, it’s believed that proper energy flow can have positive and profound affects on the mind and body.

After reading these books, I decided I had nothing to loose by trying it. So I began meditating for about fifteen minutes each morning in the manner suggested in “Chakras: Awaken Your Internal Energy.” After meditating, I took the necessary time to perform the acupressure routine described in “5-Minute Chi Boost.”

Following this routine for about two weeks, I woke up one morning feeling GREAT! After a couple days of feeling amazing, I began asking myself, “What am I doing differently?” Apparently I’m not too bright because it took me awhile to remember.

It has now been almost two months since I began the daily routine I described above. I do my best to not miss a day; and when I do skip a couple of days, I begin feeling poorly again. I have been, and continue to be, amazed at the monumental difference in how I’ve feeling by spending 15-20 minutes a day doing these simple practices. It is nice to feel like myself again. It’s nice to be energetic and have a clear mind.

I know some people will probably think what I’m experiencing is a “placebo affect” or the power of suggestion. If that’s the case, so be it. But I truly believe these simple exercises are what has made such a profound difference in how I feel.

My purpose in sharing this is to help other people open up to the possibility. If chakra meditation and acupressure stimulation has worked to improved my health, maybe it can work for you too. When you live with a chronic illness, I feel it's important to be open to other methods and remedies. After all, what harm is there is trying a new practice to see if it helps improve your health?

Managing a Sickle Cell Pain Crisis

For the past fifteen days I have been in a sickle cell pain crisis. People who aren’t familiar with the illness ask, “What does a pain crisis feel like?” I usually reply by saying, “There are many degrees of severity of pain crises. To help convey this in terms people can understand, I compare a crisis to the weather. Sometimes it’s partly cloudy with a light mist of rain barely noticeable on your skin. Other times it’s a monsoon; there’s roaring thunder, steady lightening, 100mph winds, and a down pour of rain so heavy you can’t see in front of you. And there is everything in between.

“Light mist” pain crises feel like faint pain all over my body that causes me to feel achy, sluggish, and tired; kind of how you feel when the flu is coming on. When it’s a “monsoon” pain crisis, it feels like a million tiny needles are trying push their way through every inch of my body; and with every heart beat, those needles go in, and out, in and out; and with every breath, they go in and out, in and out. It hurts to move or even be touched in the slightest of ways.

So what helps? When I’m having a monsoon, or near that level of pain, I do the following things. 

1) Hydration. I increase my water intake. Hydration is really important in Sickle Cell Disease. So I set a timer every 30 minutes and drink half a glass of water (about 6oz). That way, by day’s end, I will have drunk well over a gallon of water.

2) Oxygen. When I sleep, my blood oxygen level drops to 70%. As a result, I use oxygen at night when I sleep. It’s an “oxygen concentrator;” a machine that converts the air in the room to the quality of pure oxygen. When I’m having a monsoon crisis, I use that oxygen 24/7, and it helps. Sickle cells block the flow of blood and oxygen, so having this additional oxygen is beneficial.

3) Be still. I stay home and do as little as possible. When it’s a monsoon pain crisis, it’s impossible to do anything anyway. When the crisis is less intense, I still know when I need to stay home and be quiet. Physical activity will only make the pain worse and risk hospitalization.

4) Pain medication. I might have to increase the amount of pain medication I normally take. Obviously I am careful not to overdose, but I know what I can take and when. Sometimes, when it’s monsoon season, home prescription pain medicine does very little to relieve the pain and the only thing I can do is wait out the storm.

5) Stay warm. Sickle Cell patients are highly temperature sensitive. Extreme temperatures—be it hot or cold—can trigger a pain crisis or make a current crisis worse. When in crisis, I wear warm clothing and often have an electric blanket on me. Staying warm during a crisis is very important. 

6) Meditation. I use various meditation techniques to slow my breathing and regulate my heart-rate. Getting excited, emotional, or panicking during a severe crisis will only make the pain worse. Staying as calm as possible is HUGELY important.

7) Know when it’s time to go to the hospital. From experience, I’ve learned when my body is telling me that it’s time to go to the hospital. In all honesty, I can’t remember the last time I had to go to the hospital because my pain was so out of control that I couldn’t manage it home. Nearly all of my hospitalizations over the past 20 years have been due to low hemoglobin levels or other types of illnesses. Most of the time, I just deal with the monsoon in the comfort of my own home and bed.

How Long Does a Pain Crisis Last? The short answer is, anywhere between less than a day to months. Monsoon level pain crises usually last one or a few days. “Light mist” crises...they can last days, weeks, or even in my most extreme case, a whole year.

My present crisis for example: on Saturday I felt fine. Sunday morning I woke up having a mild-moderate crisis, which progressed to a monsoon within a period of four hours. Monday and Tuesday it was a “light mist.” Wednesday it was one step below a monsoon. Thursday thru Friday it was a light mist again. Saturday was a step or two below monsoon. Sunday and Monday, back to a light mist.

I have said it before; the only thing predictable about Sickle Cell Disease is its unpredictability. We can be fine one minute, and in agony the next. The most important thing I can say to a friend or family member of a Sickle Cell patient is, be patient and be understanding. Those two things go along way at helping your loved one’s stress level.

Methadone & Morphine in SCD Pain Management

For nearly ten years now, the doctor's at my pain clinic have prescribed methadone and morphine to manage my pain. Both of these are controlled substances and are powerful pain killers. I know a lot of people are afraid of taking these medications. Drowsiness, nausea, constipation, and risk of addiction are some of their concerns.

For me, as long as I eat something when I take them, nausea isn't a problem. Because I've been on them so long, drowsiness also isn't an issue. Constipation, however, is an problem. If I don't take a laxative called senna every day, I will be constipated in no time. As for addiction, this is a risk with any prescription pain killer. To prevent addiction, one must be disciplined.

My prescriptions allow me to take 1-2 tablets of methadone every four hours, and 1-2 tablets of morphine every six hours. To prevent addiction and building up tolerance to these medications, I always ask myself the following questions BEFORE I take them:

1. Can I use meditation to reduce my pain? 
2. Do I really need to take these now, or can I wait another half your? or hour? or longer?
3. Do I need to take two tablets, or will one be enough? or maybe half?

By asking myself these questions, and through daily meditation, I have been able to avoid addiction and building up a tolerance to my pain killers. My doctors marvel that I've been so stable for so long with my medications. I know the reason is because I ask myself the above questions every single time I go to take my pain medication.

For me, these medications do what they are suppose to do, they manage my pain. 95% of the time, they do not cause nausea or drowsiness; I don't get any kind of buzz or high from them; and they don't cause me to zone out in any way. They simply reduce my pain. While on them I am able to drive, think, and behave normally. However, on occasion, because of increased pain and dosages, my pain killers do cause me to become drowsy and/or mentally cloudy. When this happens, I NEVER operate a vehicle.

Although my pain medications provide pain relief on a daily basis, there are negative side affects which I experience in varying degrees. For me, the biggest drawback is how it impacts me spiritually. Faith and spirituality are a huge part of my life. I often feel as though the combination of my pain and pain medication dull my spiritual sensitivity. It's hard to put into words exactly, but I constantly struggle to counter-balance my spirituality against the effects of my pain and medications.

I will also admit that the effects of my pain killers dulls my intellect in almost imperceptible ways. Sometimes I feel that my memory isn't where it should be; my thought processes aren't as quick as they could be; and my intellectual capacity isn't where I would like it to be. Whether this is a result of Sickle Cell Disease affecting my brain, a consequence of the medications, or a combination of both, I don't know. I personally feel it is a combination of both. Lets be honest, how can these drugs not have negative effects on the brain? And since sickle cells don't carry oxygen the way they should, how can that not affect brain function?

My purpose in writing this post to help inform anyone who is considering taking methadone and or morphine to manage their chronic pain. All I can do is share my experiences with these medications. The problem is, prescription pain killers and the pain from Sickle Cell Disease affects everybody differently. What works for one person may not work for another. For me, these pain medications work and allow me to function "normally" 95% of the time.

Anybody taking prescription pain killers should know, if you take them daily, your body will develop a dependence on them. Dependence is very different than addiction. For example, I once ran out of my pain medication; and because it was a holiday weekend, the pharmacy couldn't fill my prescription until Tuesday. After about twenty-four hours without my medication, my body began going through withdrawals. It wasn't a pleasant experience and I wound up having to go to the hospital. So, with regular use, physical dependence is unavoidable; addiction, however, IS avoidable with careful and responsible use.

"Vein Finder," a Blessing for Sickle Cell

There is a wonderful piece of technology out there called a Vein Finder (though there are other like products with different names that do the same thing). It’s a device phlebotomists use to help them...wait for it...FIND OUR VEINS!

Like most Sickle Cell patients, nearly all my veins are used up. I have only a few areas in my hands where an IV can be put in; and when I’m receiving blood, it’s even more difficult to find a large enough vein for the blood.

During my 2015 hospitalization, the first vein used to receive two units of blood, worked just fine. But when it was time to give me a third unit, my vein went bad five minutes into the transfusion. So the third bag of blood was hanging there with an invisible ticking clock next to it. As I’m sure you know, the blood has to be used within a certain period of time before it goes bad.

So, frantic to get this last unit of blood in me before it’s too late, one nurse tried unsuccessfully to put a new IV in me. Looking all over for another spot, she called for another nurse, and another. Thankfully they hadn’t yet stuck me a second time, but were frustrated in their failed efforts to find a proper sized vein. Finally, one of them asked, “Where’s the Vein Finder?”

“What’s a Vein Finder,” I asked.

“I know where it is,” another nurse replied. “I’ll run and get it.”

Having no idea what they were talking about, I watched and listened with confusioned intrigue. A little bit latter the nurse hastily returned with this wheeled pole that had an articulating arm on it with a square device on the end of the arm.

“So what is this thing?” I asked.

“It’s awesome,” my nurse replied enthusiastically. “Just watch.”

So they plugged in the “Vein Finder”, wheeled it beside my bed, adjusted the arm, and angled the device over my hand—where the last of my good veins are located. They then flipped on the device, which projected a rectangular green—laser-like—light onto my hand. Then, like some kind of futuristic holographic map, every twist and turn of every vein, artery and capillary in my hand was instantly revealed. 

Within seconds, all the nurses simultaneously exclaimed, “There it is!” and pointed to the perfect vein. There mine as well have been a green neon arrow pointing to my vein with a sign, “Stick Needle Here!”

Without any effort, delay or mishap, the nurse was able to put the right sized IV in my vein. Within minutes, my third unit of blood was flowing smoothly into my hand. It was like magic. I’ve never been so happy to receive an IV. It was/is an amazing piece of technology that kept me from being needlessly stuck over and over and over again in search of the ever elusive “perfect vein.”

I don’t know how widely available these devices are. During my most recent hospitalization—when the nurse was having problems finding a vein on me—I asked if a Vein Finder was available; much to my sorrow, there wasn’t. Hopefully the day will come when every phlebotomist, ER, and hospital nurses’ station will have these wonderfully magical devices at the ready.

I feel bad it’s taken me so long to write about this experience. Every person who is frequently hospitalized needs to be informed about this device. If I could afford to buy a portable Vein Finder, I would take it with me to every doctor’s appointment and ER visit. Since that option is available to very few people, at least we can be armed with the knowledge of its existence. I hope this helps. 

The image below was taken off the internet. What is shown is very similar to what my hand looked like when the Vein Finder was used on me. Except, my veins aren't even close to being as straight as this person's.

Sickle Cell: Bone Marrow Biopsy

About a month ago I was hospitalized with a hemoglobin level of 4.2. I was admitted for four days and given two units of blood. They were watching to see what my hemoglobin was going to do; they were concerned about my bone marrow not producing enough red blood cells to keep up.

My hematologist ordered a bone marrow biopsy, which I had done yesterday. I was pretty anxious about the procedure. I had mine done as out patient. I went in for a blood test at 9:00am then checked in for the procedure that was scheduled for 11:00am. 

Normally they have you lay on your stomach, but with both my hips in the state they are in from severe avascular necrosis (AVN), I can’t lay flat like that; so they had me lay on the side that was most comfortable for me; which is my left side. They then began the procedure on my right hip, just above my buttocks. They administered a sedative and pain medicine through my IV before they began. Honestly, I wish they had given me the sedative an hour before, but oh well.

They then numbed the area with lidocaine, and also numbed the bone. That part wasn’t too bad. I felt the pressure of them working. They then told me they were going to extract the bone marrow and not to move. When the extracted the marrow, that HURT, a lot. And they had to do it twice. They gave me more pain medication and also took a sample of the bone, which I felt, but not as badly as the extraction; it was just uncomfortable. Not long after, they were all done. I think from the time they actually began the biopsy to the time they finished, it probably only took ten minutes or less. Preparing me for the procedure, the procedure, and then dressing the wound, in all it may have taken a half hour.

The pain from the extraction began to subside pretty quickly. They had me lay on my back with a towel behind me on the dressing to add pressure on the wound. They kept me for observation for about another half hour. I had a family member with me who drove me home. The drive home was painful because the lidocaine was wearing off and I felt every bump in the road. I live almost an hour away from my doctors and hospital, so it was a long painful ride home.

By the time I arrived home I was very tired. Between the sedative and pain meds they gave me, accompanied with the pain, I was pretty exhausted. Today, I’m still a little tired and a bit sore, but not too bad. I was instructed to keep the wound dry and clean for 24 hours. After 24 hours I could shower, but no baths for a few days. There is danger of infection; after all, they did dig into and remove part of the bone in my hip.

It will take 2 days to get some results of the test and two weeks to get other results. So I will see my doctor again in a couple weeks. Thankfully, when my hemoglobin was tested yesterday it was 8.6. So I’m praying that’s a good sign that my bone marrow is working as it should.

So I’m sharing my experience so others can know what to expect. I think a lot of my anxiety came because I didn’t know what to expect. I was told by the doctors performing the biopsy that most people don’t feel the pain I did from the extraction. The severe AVN of my hips probably contributed to the pain. I don’t know if I believe them. A few days before I had the biopsy, I watched one performed by a doctor on YouTube; which probably wasn’t the best idea. But the doctor in the video said the extraction is the part that “HURTS.” The doctor in the video was correct.

Though I don’t want to have to repeat the procedure anytime soon, I know what to expect next time; which hopefully will reduce my anxiety. If you, or someone you love, has to have a bone marrow biopsy, know the extraction of the marrow is the worst part. The upside is, the pain from the extraction begins to subside pretty quickly and the whole process doesn’t take that long. 

I am going to do my best to take up writing regular posts again. Until next time....