Category Archives: Life

A word about PERSPECTIVE:

This is a photo of some of the medicine it takes to keep me functioning at a level of semi-normalcy. It allows me to blend in without people noticing that I move and feel like an 80 year old man, thanks to Ankylosing Spondylitis.
Additionally, there is a shot I take once a month that suppresses my immune system, making me more susceptible to illness and there is also a monthly trip to the hematologist for a therapeutic phlebotomy.

Now, about that perspective…

When I look at this medication regimen through worldly eyes, I am frustrated that I have to take so much medication to function at age 44….
But when I see it through a Biblical perspective, I thank God for the miracles of modern medicine which allow me to keep going.

When I consider the cost of the medication from a worldly perspective, I am overwhelmed by thoughts like “How am I going to pay for this?”…
But when I see it through a Biblical perspective, I thank God for always meeting my needs and providing for me and my family, even when we don’t always think to ask Him to. We have never needed anything more than God provided, but God has always provided more than we need.

When I dwell on and am frustrated by the seemingly hundreds of doctor’s appointments I have each year, I can easily slip into a moment of self-pity, or a bout of major depression…
But when I acknowledge that “all good things come from the Lord”, I am eternally grateful for the wisdom God has given those doctors that help manage my health and I’m able to joke about how it takes a whole team of doctors, nurses, and “-ists” to keep me going.

When I look around me at the world we live in through a worldly perspective, I see a mess of turmoil, angry people, hurt people, misguided people, hatred, pain, suffering, death… all consequences of our actions – consequences of sin…
But when I see it through a the perspective of one who follows Jesus, I am overwhelmed by the profound grace, mercy, love, forgiveness and salvation that comes through knowing Jesus Christ, the Lord of my life. I am amazed at the love that transcends all the bad in this world. I see a God who is bigger than anything we face in this life.

Do you know that God loves you? Do you know you have forgiveness and freedom offered through Jesus Christ? Do you know that God offers this eternal salvation through Christ to everyone?

If you don’t know this peace that surpasses understanding; if you don’t know the love of God in a personal way, please let me share with you the reason for the hope I have in me. I’ll gladly lead you to the throne of God and eternal salvation. I know The Way.
— Royce

“For freedom Christ has set us free; stand firm therefore, and do not submit again to a yoke of slavery.” -Galations 5:1

Also posted in Perspective

Whispering Prayers and Shouting Condemnation

I believe with all my heart that the world can’t hear us shouting praises to the Lord, because our silent, whispering prayers are being drowned out by our shouts of judgmental condemnation.

Wake up people of the Lord! Our praises should drown out the hatred in the world, rather than our hatred drowning out our very own weak and feeble praise to the King of Kings.

There’s too much work to be done to sit around pointing fingers at people and pronouncing them dead. Jesus came to heal the sick and give life to the dead! He died for that very reason and yet we, who are not fit to touch the hem of his garments, somehow believe we have the right to judge the wicked? Instead of judging people, how about grabbing one in each hand and leading them to the throne of God?

I believe, as the scripture says, that one day He alone has the right to say either “Well done, thy good and faithful servant!” or “Depart from me… I knew you not.”

God forgive our self-righteousness. Please, God, give us the strength to teach the world to love according to the model Jesus gave us. God grant us wisdom and courage to stand for what is right by simply obeying you.

Also posted in Perspective
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Chronic Illness, Clinical Depression, and Suicide…

Anyone who knows me really well, knows that I suffer from chronic illness – specifically, Ankylosing Spondylitis (A.S.) and Hereditary Hemochromatosis. Several months ago, I joined an online support group for A.S. and have found it to be incredibly helpful in making me feel more “normal”.

Last week, I became one of the admins for that group which consists of over 9,800 people, all of whom are suffering in various stages of this terrible illness. As I’ve participated in the group, I’ve noticed that almost everyone  has suffered from depression at some time or another… some clinical depression for years (like me) and others situational depression that comes and goes. Anyway, I tend to look for similarities and patterns among the people in that group and there are a couple of things I’ve noticed:

  1. Autoimmune diseases tend to have a high incidence of comorbidity, which is the simultaneous presence of two chronic diseases or conditions. In fact, I would even say “multiple comorbidities” seem to be prevalent. Many people with autoimmune disease have so many other health issues simultaneously that it’s no wonder there is such a high incidence of depression… which leads me to my next observation.

  2. Many people who suffer from illnesses with chronic pain also suffer from depression. I’m not just talking about sadness every now and then, I mean sustained, overwhelming sadness that doesn’t go away.  Clinical depression is the more severe form of depression, also known as major depression or major depressive disorder. It isn’t the same as depression caused by a loss, such as the death of a loved one or the loss of a job. Symptoms of clinical depression include:
    • Depressed mood, such as feeling sad, empty or tearful (in children and teens, depressed mood can appear as constant irritability)
    • Significantly reduced interest or feeling no pleasure in all or most activities
    • Significant weight loss when not dieting, weight gain, or decrease or increase in appetite
    • Insomnia or increased desire to sleep
    • Either restlessness or slowed behavior that can be observed by others
    • Fatigue or loss of energy
    • Feelings of worthlessness, or excessive or inappropriate guilt
    • Trouble making decisions, or trouble thinking or concentrating
    • Recurrent thoughts of death or suicide, or a suicide attempt

      So this isn’t something you can tell people to “cheer up” and they’ll get over it. It isn’t a choice and it isn’t brought on by a lack of effort on  one’s part to “be cheerful”. Imagine being in a wheelchair and people constantly telling you to “get up and walk”, that’s all you need to do to get better. Or, similarly, imagine being blind and someone telling you that you aren’t trying hard enough to see; if you would just force your eyes to see, then you could. Sounds ridiculous, doesn’t it?! But the exact same thing happens with depression… people don’t understand so they go about issuing platitudes or solutions as if one magic little thing would fix it. “Cheer up!”, they say, or “What do you have to be sad about? You have a great life!”… as if you have no right to be depressed. How horrible would it be to suggest to an amputee that they had no right to lose that limb, or a to any person with a visible, physical disability that they are less of a person because they choose to be that way or they must’ve done something to be in that position. This condemnation of the condition of depression leads to piling on more of the feelings of worthlessness and certainly does more harm than good. The lack of understanding leads to a more drastic feeling of isolation and so the downward spiral goes.


  3. This brings me to my final observation: suicide. Ever since I was a child, the word “suicide” has always been taboo. People almost cringe at the mention of the word and, therefore, don’t want to even think about it, much less talk about it. It is offensive to people when they think that something, or anything, can be worse than death. I’ve come to understand that there are some things in life that are actually worse than death. Things like constant pain, depression, feelings of worthlessness, anxiety, medical problems, isolation and extreme loneliness that comes from chronic illness which others cannot possibly understand – all piled one on top of another on a single person. I can tell you that being a part of a group of people who all share the same problems, I see the recurring theme of suicidal thoughts. People suffering from chronic illness are prone, not only to clinical depression, but the inevitable side effect and it’s constant companion – suicidal thoughts. “They’d be better off without me.” or “I can’t take it anymore… I’ve reached the limit of what I can handle.” or “I’m alone and suffering in constant pain. Nobody cares about me; they all think I’m a burden.”

If you know someone who is chronically ill, chances are they are suffering from depression, as well. If you care about them, let them know you care… for real! In tangible ways, you can let people know you care and are thinking about them with a simple phone call, an invitation to do something like go to dinner or to do something they enjoy. A warm hug, a friendly smile, a sincere, unrushed conversation, a handwritten note in their mailbox can all be encouragement maybe in one of the darkest hours of their lives.

Chronic illness is sometimes “invisible” and so is depression, but they go hand-in-hand and I can assure you that the suffering is very real… probably more than you could ever imagine. Take the time to let someone you know you care. You may be the person who makes a significant difference in someone’s ability to live for another day. Just don’t try to “fix it for them” by playing it down, or trivializing it. Don’t try to offer simple solutions that makes them feel even worse, and do not tell them that everybody is sad sometimes, but they get over it. Nobody would choose depression over happiness. Nobody.

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The Corner of “Nothing” and “Something”

I haven’t said much about this, because it bothers me when people put me into a box. I don’t like being labeled as someone with “health issues” because it becomes a focal point of conversation for some people every time they speak to you. People can become a constant reminder of the very problems you try to overcome by reminding you of them every single time they see you.

With that being said, I’ve been thinking a lot lately about the notion of “suffering in silence”. Sometimes, it can be as admirable quality when you continue to live in a positive manner despite the troubles you’ve faced. It’s cool sometimes when people say “Wow, I had no idea… you always seem so positive for someone who’s been through all of that.” And, yet, other times I wonder if it is harmful to suffer in silence. Sometimes, I think people need to hear about the problems you are dealing with and the hope you have that gets you through it all.

A little over a month ago, I was driving my daughter to school and myself to work. Somewhere along the way, I remember everything going white, except for a few streaking red lights. The next thing I remember is my daughter saying “What happened?” and as I looked around to see people running at my car, I realized I was off the road. I told my daughter that I wasn’t sure what had happened, and asked if she was okay. Thankfully, she was unharmed. I looked to my left and saw an SUV with the bumper knocked off of it and I saw a telephone pole lying across the road. Then people were asking if we were okay and I noticed that the front end of my truck was all smashed up.

I remember a police officer grilling me about drugs and alcohol. It was roughly 6:45 am and he was asking if I had been drinking (which, obviously, I had not but thought was a funny question). I called and left my wife a voicemail telling her that I had been in an accident. When she arrived, she noticed that I was speaking very slowly as if something were wrong. She took my daughter to school and the police officer came back to talk to me about how “he could have me taken in for a toxicology test” and “he could write this into a traffic citation for driving under the influence of ‘something’ “. He told me he was “going to give me a break” and that I should “consider this a wake-up call”.

Needless to say, I was not under the influence of any drugs or alcohol, but he obviously thought so. I had a complete work-up at the hospital to determine if I had a stroke, another heart episode, or maybe a seizure, blah, blah, blah… only to find: Nothing. No stroke, no seizure, no heart issue… nothing.

I’ve been here before. Nothing.

I had to go see a neurologist to rule out seizures and he was left scratching his head with no explanation. Given my medical history and the length of time for any doctor to make an accurate diagnosis, “nothing” has become a regular answer that I’ve come to expect until two years ago, when one doctor was finally able to figure it out. I have Ankylosing Spondylitis and Hereditary Hemochromatosis. Both are hereditary and both are terrible, but knowing is better than the private hell of not knowing.

I still don’t know what caused the accident and I can’t drive for six months.

So here I am again, at the corner of nothing and something.

Perhaps you are in the same place. Sick of the answer nothing, when you know there is not only something, but a big, hairy, stinking – something.

I guess what I’m getting at but am having a hard time articulating concisely is that, sometimes, keeping things to yourself is the appropriate thing to do but other times it is totally appropriate to let others know of your struggles because you never know who is sharing with you in your self-imposed solitary confinement. There is hope, friends. There truly is a light at the end of the tunnel and it isn’t a train. One day, when this body is dead and wasting away back to the dirt from which it came, I will have a new body free from disease, pain, and sorrow. I am assured of that through the life changing gospel of Jesus Christ, the Great Physician. It is through my faith in Him that this body will be restored.

Do you have that hope? If you don’t, I pray that you are able to find Jesus to be your Savior and the Lord of your life and I ask your forgiveness if my actions have ever caused you to doubt the truth of the Word of God.

As for me, I will continue to laugh with my family and friends about the cards I’ve been dealt. The struggle is still there, and the situation doesn’t change, but the outlook is positive. I give thanks for this amazing life even when it is the constant health issues raise their heads and cry for my attention.

Be thankful in all circumstances, for this is God’s will for you who belong to Christ Jesus.  1 Thessalonians 5:18

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13 Years of Undiagnosed Chronic Illness

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I have found in daily life, that people don’t like to talk about health issues because they are embarrassed or don’t want to seem “weak” so they just don’t talk about it. Your health is deeply personal issue, especially for men. Men don’t want to come across as weak, so they “suck it up” and press on through the suffering. Many won’t go to a doctor because they are embarrassed or want to be seen as “strong”. Well, that’s just stupid and is why I am writing the very lengthy, deeply personal, and somewhat embarrassing post. This is my story of suffering for many years before finding the cause all my health issues and I hope it helps someone else out there who is suffering in silence or the lonely solitude of chronic illness. So, here goes nothing.
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Some of my earliest memories in life are of really bad, recurring ear infections that started when I was a baby and lasted until early teen years. I had tubes put in my ears when I was about 2 years old and continued to have so many bad ear infections that my ear drums ruptured repeatedly, leaving scar tissue and resulted in poor hearing.

When I was a child, I noticed that there were some things that made me freakishly different from other kids. One of those things was hyper-flexibility. I could bend and contort my body like a circus side-show freak! To this day, I can still bend my knees backwards in a way that makes them appear to be broken. For the most part, I lived life to the fullest as a child with exception of participating in organized sports.

When I was in 7th grade, we had a new physical education requirement called the “Presidential Physical Fitness Test (PPFT)”. It involved a lot of push-ups, sit-ups, chin-ups, jumping jacks, and insane amounts of running. It was during this rigorous testing that I first new something was really wrong with me. I couldn’t perform like most of the other kids in my class. I just began to think of myself as “weak” because I just wasn’t up to par, physically. I remember during the running portion of the PPFT, I was having trouble breathing and my heart was pounding out of my chest. I was seriously struggling to breathe as other kids ran laps around me. I ran past my gym teacher and tried to explain how I felt. He just told me “Run faster you little wuss.” I thought for sure I was going to drop dead if my heart beat any faster, but I continued to run and passed the test.

When I was a teenager, I started getting very bad headaches. I didn’t know they were migraines until much later. In our house, you didn’t really go to the doctor for things like headaches. If you had a broken bone or needed stitches, you wound up at the doctor, but not much else got you there. We were a strong, suck-it-up kind of family that just rolled with the punches and took over-the-counter medication for ailments. The headaches went on for years, getting more frequent and progressively worse over time.

In my late teens through early twenties, I worked a very physically demanding job and developed a severe stabbing/burning pain in the center of my back slightly above my shoulder blades. I also had some knee, shoulder, and wrist problems but I figured it was just a body’s reaction to a physically demanding job.

When I graduated from college, I began my career as a graphic designer and started to sit behind a desk for 8 hours a day. I gained 45 pounds in about a year and a half. After working about 6.5 years of hard physical labor, it was a shock to my body to sit in a chair all day. When I was working hard, I would be sore at the end of the day from hard work, but it was different than sitting in a chair all day which creates a whole different kind of stiffness and soreness. Our bodies weren’t meant to sit still that long.

One day in June of 2000 when I was 28 years old, working at my job as a graphic designer, I had a fluttering sensation in my chest. The last thing I remembered was putting my hand on my chest and staggering backward then everything went black. I had a sudden cardiac arrest.

My heart went into Ventricular Fibrillation and I hit the floor. My coworkers called 911 and the fire department arrived in 1 minute and 28 seconds from the time the call was placed and I was already turning blue by the time they arrived. One of the fireman was an EMT and he knew immediately what to do. The city I live in had invested in defibrillators on all of the fire trucks (brilliant) and they had to shock me three times to get my heart going again. They performed CPR in-between the shocks. An ambulance arrived and took me to the hospital and the EMT had to shock me once more on the way as my heart went into v-fib again.

WHAM… my life changed suddenly and drastically. I woke up in the hospital, confused, and had no idea what had happened. I had a stabbing pain in my chest and said “Ahhh… I feel like I’ve been stabbed.” and somebody said “Well, you kind of have been stabbed… you had surgery to install a defibrillator.” I spent 8 days in the Intensive Care Unit (ICU). The doctors were completely baffled because I was 28 years old, in decent physical condition, didn’t smoke, drink or use drugs. The doctors could find no reason for the cardiac arrest.

The next 13 years were incredibly difficult as I learned to deal with “limitations” of a person with a heart condition. It seemed like everyone was scared to be around me in case I did that freak thing again, you know… where my heart stopped. I became deeply depressed and lived in a fog of depression for years. I had so many physical problems but yet I looked perfectly fine. I heard things like “You certainly don’t look sick.” and “But you look so healthy.” And my personal favorite “You have a perfectly clean bill of health… except for that cardiac arrest.”

From the time I was 28 until I turned 40, I had 17 medical procedures/surgeries. I had so many things going wrong with my body, yet no one could figure out what might be causing it all. I knew there was something terribly wrong, but none of the doctors were connecting the dots. One of my doctors even convinced me that many of the problems I was having were psycho-somatic, which is a euphemism for “It’s all in your head.” He put me on anti-depression medicine which made me feel high. It worked for a couple of months and made me forget about my physical problems because I felt high all the time. Then, the medicine started having side-effects and I had to stop taking it. The depression came back worse than before when I came off the medication.

In her wisdom, my wife convinced me to start keeping track of all the things that were happening so I began to compile a list of everything I went through. I made a list of symptoms and freak things going on with my body. Here is part of that list:

1)    Mitral Valve Prolapse (heart murmur) diagnosed at age 22
2)    unexplained Sudden Cardiac Arrest in 2000 (age 28) – ICD implanted
3)    insomnia
4)    sleep apnea
5)    moles turned white and most of them went away, leaving a flat, white spot
6)    sharp ringing in ears
7)    recurring positional vertigo (doctor called it inexplicable Vestibular Dysfunction)
8)    extreme exhaustion / constant fatigue
9)    numbness/tingling in arms and hands especially at night while lying down often woke me up
10)   weakness in arms  and sometimes, in legs
11)    Cold hands and feet, toes sometimes turned purplish color
12)    headaches – daily, often very bad – base of the back of my head
13)    feeling of extreme pressure in head when coughing, headaches worsen
14)    constant feeling of lots of pressure in my head
15)    exertion, lifting/etc. caused worse headaches
16)    Looking down for extended periods of time caused headache (i.e. – looking down while preparing food.)
17)    both eardrums ruptured within about 4 seconds of one another while flying on an airplane in 2006
18)    chronic, severe lower back pain, worst when I have a bad headache
19)    joint pain/weakness – wrists, ankles, hands, feet
20)    swollen joints
21)    voice became hoarse easily,  sometimes had difficulty swallowing
22)    dry mouth, sometimes so bad it woke me up from my lips sticking together or I couldn’t swallow because my mouth was so dry
23)    Torus Mandibularis and Exostosis -(boney growths under gums in jaw bone) surgically removed due to worsening sleep apnea & speech problem
24)    bone growths in sinuses – required surgical removal of large bone spurs blocking sinuses
25)    trouble concentrating and poor memory. I often struggled to find words during conversations, had a lot of trouble staying focused.
26)    visibly shaken beyond what is considered “normal” – literally shaking – when upset or angry
27)    tremors in hands
28)    frequent bruising without knowing what might have caused it. some on hands, but mostly backs of legs.
29)    swollen and sore salivary glands
30)    blurred vision – drifting focus and dry, burning eyes
32)    I had one Cluster Migraine headache during which I thought I was having a stroke.
33)    several times have had what I thought was pink eye” in my right eye – turns out it was actually Iritis

Now, you can see why I was depressed. Constant health issues… all unexplained or explained away as unconnected. Being faced with your own mortality at such a young age is bad enough, but when you go through all this other stuff and the doctors just don’t seem to be connecting the dots, it takes it’s toll both physically and mentally. The only way I made it through this very dark and difficult time of my life was through the love and support of the most amazing woman I know (my wife), my love for my children, support from caring friends, and a deep and abiding faith in God and knowing there is a reason for everything that happens in life. But even with all of those things in place and a life that seemed great to anyone looking at it from a distance, I just couldn’t take it any longer without some sort of relief.

I was tired of feeling like I was dying all the time. I was tired of the fatigue and aching from head to toe and all of the other problems… all with no explanation. I was tired of doctors scratching their heads and saying “Gosh, I just don’t know.” I was literally sick and tired of being sick and tired! I finally went to my doctor and pulled off the gloves. I had more than enough freak things happen that I needed help… real help, not just treating symptoms, but really looking for a root systemic cause. By this time my list of doctors included a primary care doctor (general practitioner), electrophysiologist, cardiologist, neurologist, physiatrist, ENT specialist, oral surgeon, chiropractor… you get the idea.

I told my doctor that I was tired of treating symptoms and wanted him to start trying to figure out what was wrong. I told him that I knew something was wrong with my body that was more than just a bunch of freak coincidental things going on. I knew that there was something major wrong with me but It was the bad bruising that finally made them start doing extensive testing. My doctor sent to a hematologist, who began looking for cancer, lymphoma, etc. He found nothing so I pressed for the next step. Then I was sent to a rheumatologist. I took him my “list of problems” and talked to him for about 30 minutes. He thought he might know what was wrong with me and sent me back to the hematologist for blood work to confirm his suspicions. Then, finally in December of 2012, I had a diagnosis of Hereditary Hemochromatosis (HH) and Akylosing Spondylitis (AS).

Since then, I’ve been doing much better. I have therapeutic phlebotomies to treat the HH and take Humira, Meloxicam, and Tizanadine to treat the symptoms of AS. I stretch regularly and try to remain active, which helps. When I feel the worst, I take a shower in the hottest water I can stand and that also helps a lot. I live one-day-at-a-time and manage to keep a positive attitude now. I get a little crabby when I feel really bad, but who wouldn’t?  Even on your worst days of dealing with chronic illness, remember that there is hope. My quality of life is so much better now than it was even 6 months ago.

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