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.
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
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 new 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. 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.