My Story of Being Invisible

"You don’t see me, but you will, I am not invisible" - Bono

March 10, 2019

If you saw me walking along the sidewalk, or perhaps, into a store or restaurant, or even getting in and out of my car, you would likely not think twice or consider that there may be anything wrong with me. It's deceiving. My outward appearance does not reveal anything about what is going on underneath.


I would be another passer-by, a stranger going about his day, as you would be, with nothing uniquely apparent or different about me that would cause you to question or even assume that I may not be well. Other than a few signs indicating that I have reached middle age and some hollow dark circles under my eyes, I look pretty good for a 51-year-old man. I'm often told that I "look good" or "look young," and people are often quite surprised to hear that I have a 22-year-old son! I'm 5'11", I have not gone gray, I still have all my hair, and I usually smile whenever I meet people. I look healthy enough. I seem like I could get up in the morning, hold down a job, take care of my kids, maybe play a few sports, manage the responsibilities of owning a home and caring for the property; you know, the kind of stuff that most people can do.

If I was a used car sitting on a car lot, I could imagine someone looking at me and saying, "Hey! This one looks in pretty good shape; what do you say we take it for a test drive!" But as we all know, "appearances can be deceiving." So don't let that shiny coat of paint fool you. Before you put the key in the ignition, let's peek under the hood, shall we?

STRANGER ASKS: "What's this? Artificial hips? But you are so young? What happened? And I see there is a screw fusing a joint in your foot! Was it a fracture? OMG - your neck has been fused with rods and 10 screws, and your sacroiliac joints are fused too. You say that the surgery was successful, but your arms and hands still go numb with pins and needles depending on your neck and head position? Your TMJs (jaw joints) are quite damaged as well. Your jaw is not in the right place, and your teeth don't meet. How do you chew, talk, or sing? And, you regularly bite down on your tongue when chewing food, enough to draw blood? Do you say you have chronic pain in your head, jaw, neck, shoulders, elbows, wrists, upper back, lower back, hips, knees, and feet? Okay, let's call it "head to toe," then, shall we? You've got sciatica on the right side? It looks like your left knee will need to be replaced at some point, and probably the right one too. Both feet are showing signs of joint deformation. Your left foot does not move naturally anymore due to the joint fusion surgery, so it puts pressure on other joints in the foot, specifically the big toe joint. That may need to be replaced with a prosthetic implant at some point. Your toes are hammered and crooked. 

STRANGER RESPONDS: "What's going on here? Do you have arthritis? How can this be? You're so young! I have some arthritis in my knee. It's an old football injury that acts up now and again. Advil seems to help. But the doctor says he won't replace it. He says I'm too young!"

Living with visible and invisible diseases

It’s been almost 30 years since I was first diagnosed with an incurable, degenerative, chronic autoimmune disease - Psoriatic Arthritis. A lot has happened in those twenty-five years. Ironically, my story began as a child with a visible illness, Psoriasis, which first appeared on my scalp. I still remember asking the doctor, “Is there a cure?” and sinking in my chair when he answered, “No.” It eventually spread to other parts of my body and became quite a problem. I spent all my teenage and early adulthood years doing my best to hide my visible disease. As you can imagine, going through the “teen” years with a visible disease and not easy to look at was very hard. Kids can be cruel, as we all know, so trying to keep my Psoriasis from being noticed was a daily challenge, especially when most of your scalp is covered in scales and flaking onto your shoulders. You become very self-conscious and hyper-aware of who’s around and who’s looking at you. And, because Psoriasis is a visually unpleasant skin disorder, people tend to think it might be something contagious. So, you come up with creative ways to get by without being noticed, and when you do get noticed, you do your best to circumvent people’s comments rather than admit to having Psoriasis. It reshapes your entire life and makes things like having a girlfriend much more challenging, if not impossible.

Interestingly, I still managed to pursue my passion for swimming and eventually became a lifeguard! Despite having these scaly red patches on my body, I still showed up in my Speedo for swimming lessons and lifeguard training. But, I should add that I (and my sister, God bless her) spent countless hours applying salves and tar-based lotions to my patches and used special shampoos to control the disease. I also went to the sun tanning parlour once a week during the winter months, which helped keep the Psoriasis at bay. (The sun’s ultraviolet rays are made up of UVA and UVB rays. UVB rays are more effective at treating Psoriasis symptoms because they slow the rapid rate of skin growth and shedding.) 

In early spring, I would spend hours lying in the sun in my backyard, shivering in my Speedo as I soaked in the sun’s rays to be “ready” for the summer swimming/lifeguarding season with as few noticeable patches as possible.

To summarize, your life revolves around your condition. At that time, back in the ’80s, people kept things hidden. Only recently have we seen an emergence of people like Cyndi Lauper, who recently shared her struggle of living in the limelight with Psoriasis and has endorsed Cosentyx®, a biologic drug that is used to treat PsoriasisPsoriatic Arthritis, and Ankylosing Spondylitis. But back in the day, no one talked about it. Oddly, I only recently learned that Psoriasis is also considered an autoimmune disease. Throughout all the years, no doctor had ever mentioned that to me.

Many of you who know me already know that I have been living with Psoriatic Arthritis for many years. Some of you know much more about what I’ve been through than others. But even for those who know me well and know my story, there is still so much misunderstanding surrounding arthritis. So I decided it was time for me to share with those closest to me and the rest of the world what it’s like to live with a debilitating, degenerative, invisible, chronic disease. Did you know that there are more than 100 different forms of arthritis and related diseases? The word “arthritis” is an umbrella term for a large family of rare and common diseases, which all fall under this category - Arthritis. One word to cover 100 different types isn’t necessarily a good thing. It makes it much harder for people to understand the difference between, say, arthritis symptoms that manifest due to old age versus living with a chronic, degenerative autoimmune disorder such as Psoriatic Arthritis and Ankylosing Spondylitis, or Rheumatoid Arthritis. The 5 most common types of arthritis are Osteoarthritis, Rheumatoid, Psoriatic, Gout, and Lupus. Unfortunately, thanks to the marketing targeted around the trillion-dollar “pain relief” industry (Advil, Tylenol, etc.), the public at large has associated the word “arthritis” with the kind of pain that an athlete or physically active person might experience through normal activity. These milder forms of arthritis, the ones that come from aging and the normal wear and tear on the joints, can be relieved with over-the-counter drugs. However, the autoimmune types of arthritis are far more severe; these are serious conditions that can affect more than just the joints. They also attack tendons, ligaments, muscles, organs, and the metabolic system. Psoriatic arthritis comes with quite a long list of comorbidities. Kindly refer to the attached chart below for a visual guide of what has been affected in my case.

At age 27, I had my left hip replaced, and at age 31, I had the right hip replaced. In 2006 I had a screw put in my left foot to fuse a damaged Talonavicular joint, and more recently, in 2016, my left hip was revised because the 17-year-old implant had worn out. Sadly, it was not a 100% successful surgery, and I have been left with permanent sequela, i.e., stiffness, pain, nerve damage, and bouts of acute sudden pain that shoots down through the femur depending on the rotation of the hip. I met with an amazing orthopedic surgeon in New Jersey in 2015 who gave me his opinion as to why I was still having pain. According to him, a critical piece of bone was missing on which the weight was supposed to get distributed. When I asked what could be done to correct the problem, he said, “Another hip revision.” However, with everything I’ve been through, the idea of having the hip revised again is not something I really want to consider!

My journey has become ever more challenging, thanks to a growing list of diseases, syndromes, and comorbidities. I've gone from 2 (Psoriasis and Psoriatic Arthritis) to over 24 in the past seven years! Yes, that's right; I have 24 health issues requiring daily management, which severely affect my quality of life. Five years ago, I was only taking two medications: A biologic drug that I self-injected every two weeks and PrednisoneI'm now taking 13 different medications daily, with some spread out in 3 doses throughout the day.

The List

AUTO-IMMUNE ILLNESSES

  • Psoriatic Arthritis

    Psoriatic arthritis is a long-term inflammatory arthritis that occurs in people affected by the autoimmune disease psoriasis. The classic feature of psoriatic arthritis is swelling of entire fingers and toes with a sausage-like appearance. Wikipedia

  • Ankylosing Spondylitis

    Ankylosing spondylitis is a type of arthritis in which there is long term inflammation of the joints of the spine. Typically the joints where the spine joins the pelvis are also affected. Occasionally other joints such as the shoulders or hips are involved. Eye and bowel problems may also occur. Back pain is a characteristic symptom of AS, and it often comes and goes. Stiffness of the affected joints generally worsens over time. Wikipedia

  • Sjögren’s Syndrome

    Sjögren's syndrome is a long-term autoimmune disease in which the moisture-producing glands of the body are affected. This results primarily in the development of a dry mouth and dry eyes. Other symptoms can include dry skin, vaginal dryness, a chronic cough, numbness in the arms and legs, feeling tired, muscle and joint pains, and thyroid problems. Those affected are at an increased risk of lymphoma. Wikipedia

    In the fall of 2020, I was diagnosed with Meibomian gland dysfunction and blepharitis. These two conditons are compications of Sjögren's and can be quite debilitating at times.

    Sjögren’s Syndrome My Eyes

POLYGLANDULAR AUTOIMMUNE SYNDROME (ENDOCRINOLOGICAL)

  • Secondary Adrenal Insufficiency

    Secondary adrenal insufficiency is due to the absence of the normal stimulation to the adrenal cortex from a lack of ACTH. This results in a partial or total deficiency of cortisol, but often a normal or near normal production of aldosterone.

    The symptoms are related to the degree of cortisol deficiency, the underlying health of the individual, and the rate of reduction in cortisol level. The most common symptoms are:

    • severe fatigue
    • loss of appetite, weight loss
    • nausea, vomiting, and diarrhea
    • muscle weakness
    • irritability and depression

    National Adrenal Diseases Foundation

  • Low testosterone

    Some men have low testosterone levels. This is called Testosterone Deficiency Syndrome (TD) or Low Testosterone (Low-T). Deficiency means that the body does not have enough of a needed substance. Syndrome is a group of symptoms that, together, suggest a disease or health condition.

    • Low sex drive
    • Fatigue
    • Reduced lean muscle mass
    • Irritability
    • Erectile dysfunction
    • Depression
    • There are many other possible reasons for these symptoms, such as: opioid use, some congenital conditions (medical conditions you are born with), loss of or harm to the testicles, diabetes, and obesity (being overweight). See your doctor if you have any of these symptoms.

      www.urologyhealth.org
  • Hypothyroidism

    Hypothyroidism, also called under-active thyroid or low thyroid, is a disorder of the endocrine system in which the thyroid gland does not produce enough thyroid hormone. It can cause a number of symptoms, such as poor ability to tolerate cold, a feeling of tiredness, constipation, depression, and weight gain. Wikipedia

  • ​Cushing's syndrome (Cushingoid's)

    Cushing's syndrome is a collection of signs and symptoms due to prolonged exposure to cortisol. Signs and symptoms may include high blood pressure, abdominal obesity but with thin arms and legs, reddish stretch marks, a round red face, a fat lump between the shoulders, weak muscles, weak bones, acne, and fragile skin that heals poorly. Women may have more hair and irregular menstruation. Occasionally there may be changes in mood, headaches, and a chronic feeling of tiredness. Wikipedia

  • Prediabetic

    Prediabetes refers to blood sugar levels that are higher than normal, but not yet high enough to be diagnosed as type 2 diabetes. Almost 6 million Canadians have prediabetes.

    If left unmanaged, prediabetes can develop into type 2 diabetes—but it doesn't have to be this way. If you have prediabetes, taking steps to manage your blood sugar can change your future to one free of type 2 diabetes.

    More info: https://www.diabetes.ca/recently-diagnosed/prediab...

UROLOGICAL AND NEUROLOGICAL CONDITIONS

  • Stage 3a Kidney Disease

    Kidney disease is a severe condition in which your kidneys slowly start to fail. This leads to a build-up of harmful elements in your blood that would otherwise be filtered out through your kidneys. If kidney disease progresses, you would eventually need to get dialysis or a kidney transplant to remain alive.

    Stage 3 kidney disease means that the kidney’s function has been cut by half, and most patients experience ancillary problems like high blood pressure or bone difficulties.

    More info: https://www.webmd.com/a-to-z-guides/what-is-stage-...

  • Neurogenic bladder

    Neurogenic bladder dysfunction, sometimes simply referred to as neurogenic bladder, is a dysfunction of the urinary bladder due to disease of the central nervous system or peripheral nerves involved in the control of micturition (urination). Wikipedia

  • Peripheral neuropathy

    Peripheral neuropathy, often shortened to neuropathy, is a general term describing disease affecting the peripheral nerves, meaning nerves beyond the brain and spinal cord. Damage to peripheral nerves may impair sensation, movement, gland or organ function depending on which nerves are affected; in other words, neuropathy affecting motor, sensory, or autonomic nerves result in different symptoms. More than one type of nerve may be affected simultaneously. Peripheral neuropathy may be acute (with sudden onset, rapid progress) or chronic (symptoms begin subtly and progress slowly), and may be reversible or permanent. Wikipedia

  • Cobalt and Chromium poisoning from a leaching metal-on-metal hip

    Cobalt poisoning is intoxication caused by excessive levels of cobalt in the body (in my case, leaching from a metal hip implant). Cobalt is an essential element for health in animals in minute amounts as a component of Vitamin B. A deficiency of cobalt, which is very rare, is also potentially lethal, leading to pernicious anemia. Wikipedia

    Chromium toxicity refers to any poisonous effect in an organism or cell that results from exposure to specific forms of chromium—especially hexavalent chromium (in my case, also from the leaching metal hip implant). Hexavalent chromium and its compounds are toxic when inhaled or ingested. Trivalent chromium is a trace mineral that is essential to human nutrition. Wikipedia

    I am being tested every 3 months and my levels are just on the borderline of reaching toxicity. Their are 2 aptions available to address the problem:

    1. Have the hip implant replaced (which I do not want to do after what I've been through with my unsuccessful hip revision!) This hip, although leaching, is still very functional and reliable and is said to last me for the rest of my life.
    2. Chelation therapy (something I am considering starting after recovering from my spinal fusion surgery)

CARDIO/RESPIRATORY-RELATED PROBLEMS

  • TMJ (temporo-mandibular joints) joints damaged by Psoriatic Arthritis

    My TMJs were damaged during the early stages of the disease (mid 90's). I've been left with an open bite, a 6 milimmiter overjet, paind and stiffness in the joints and surrounding ligaments that attach to the skull, as well as a modified profile (chin is retracted).

    Some people with psoriasis and/or psoriatic arthritis can develop problems in the two joints between the skull (temporal bone) and lower jaw (mandible). These are known as the temporo-mandibular joints or TMJs for short. Read more at PAPAA

    What problems can occur?
    The TMJs are lined with synovial membrane, which can become inflamed in some people with psoriatic arthritis. This can cause symptoms of:

    • headache
    • tender jaw muscles
    • pain around the face, TMJ or ear
    • pain on opening the mouth wide and when chewing
    • joint stiffness
    • clicking as the jaw is opened or closed
    • difficulty in opening the mouth
    • locking of the jaw
  • Sleep apnea and snoring

    Sleep apnea is a potentially serious sleep disorder in which breathing repeatedly stops and starts during sleep. This happens when the muscles in the throat relax, blocking the airway. Each pause can last for a few seconds to a few minutes and they happen many times a night. In the most common form, this follows loud snoring. Wikipedia

  • Chronic insomnia

    Insomnia, also known as sleeplessness, is a sleep disorder where people have trouble sleeping. They may have difficulty falling asleep, or staying asleep as long as desired. Insomnia is typically followed by daytime sleepiness, low energy, irritability, and a depressed mood. Wikipedia

  • Hypertrophic Cardiomyopathy

    Hypertrophic cardiomyopathy is a condition in which a portion of the heart becomes thickened without an obvious cause. This results in the heart being less able to pump blood effectively. Symptoms vary from none to feeling tired, leg swelling, and shortness of breath. It may also result in chest pain or fainting. Complications include heart failure, an irregular heartbeat, and sudden cardiac death. Wikipedia

  • Metabolic Syndrome (Hypertension, High Blood Sugar and Cholesterol levels)

    Metabolic syndrome refers to the presence of increased blood pressure, high blood sugar, excess body fat and abnormal cholesterol levels, which increase the risk of heart disease, stroke and type 2 diabetes.

    Hypertension, also known as high blood pressure, is a long-term medical condition in which the blood pressure in the arteries is persistently elevated. High blood pressure usually does not cause symptoms. Wikipedia

  • Heart arrhythmia

    A heart arrhythmia is an irregular heartbeat. Heart rhythm problems (heart arrhythmias) occur when the electrical signals that coordinate the heart's beats don't work properly. The faulty signaling causes the heart to beat too fast (tachycardia), too slow (bradycardia) or irregularly.

    Heart arrhythmias may feel like a fluttering or racing heart and may be harmless. However, some heart arrhythmias may cause bothersome — sometimes even life-threatening — signs and symptoms.

GASTROINTESTINAL CONDITIONS

  • Irritable Bowel Syndrome

    Irritable bowel syndrome (IBS) is a group of symptoms—including abdominal pain and changes in the pattern of bowel movements without any evidence of underlying damage. These symptoms occur over a long time, often years. Wikipedia

    Symptoms may include:

    • pain in the stomach, especially after eating
    • bloating
    • cramps
    • diarrhea
    • constipation
    • indigestion
    • regular feeling of fullness
    • gas
    • weight loss
  • Gastroesophageal reflux disease (GERD)

    Gastroesophageal reflux disease, also known as acid reflux, is a long-term condition where stomach contents come back up into the esophagus resulting in either symptoms or complications. Symptoms include the taste of acid in the back of the mouth, heartburn, bad breath, chest pain, vomiting, breathing problems, and wearing away of the teeth. Complications include esophagitis, esophageal strictures, and Barrett's esophagus. Wikipedia

EARS, NOSE & THROAT

  • Eosinophilic Bronchitis

    Eosinophilic bronchitis is a type of airway inflammation due to excessive mast cell recruitment and activation in the superficial airways as opposed to the smooth muscles of the airways as seen in asthma. It often results in a chronic cough. Lung function tests are usually normal. Inhaled corticosteroids are often an effective treatment. Wikipedia

  • Eustachian Tube Dysfunction

    What is Eustachian tube dysfunction?

    The Eustachian tube is a small passageway that connects your throat to your middle ear. When you sneeze, swallow, or yawn, your Eustachian tubes open. This keeps air pressure and fluid from building up inside your ear. But sometimes a Eustachian tube might get plugged. This is called Eustachian tube dysfunction. When this happens, sounds may be muffled and your ear may feel full. You may also have ear pain.

    Symptoms of Eustachian tube dysfunction

    • Your ears may feel plugged or full.
    • Sounds may seem muffled.
    • You may feel a popping or clicking sensation (children may say their ear “tickles”).
    • You may have pain in one or both ears.
    • You may hear ringing in your ears (called tinnitus).
    • You may sometimes have trouble keeping your balance.

    FamilyDoctor.org

MENTAL HEALTH

  • Chronic Illness-Induced PTSD

    What Is Illness-Induced PTSD? (and Who Gets It)

    “Illness-induced PTSD is defined by clinically significant post-traumatic stress symptoms … which results from an acute or chronic illness,” Renée El-Gabalawy, Ph.D., psychologist.

    It’s not just living with scary symptoms that can lead to illness-induced PTSD. Encounters with the medical system, from invalidating doctors to invasive tests, surgeries and other procedures can be traumatizing. Other ways your life changes after a diagnosis, like the financial toll of paying for treatment, job loss and navigating your relationships when others don’t understand what you’re going through, can have a big impact too. In the professional community, however, illness-induced PTSD isn’t as well understood.

    Text above taken from: https://www.yahoo.com/lifestyle/know-chronic-illne...

  • Anxiety and Depression

    People with anxiety disorders often struggle with intense feelings of anxiety, worry, fear and/or panic. Anxiety can interfere with daily activities and may last a long time. People with depression experience a persistent sad mood that lasts a long time and interferes with daily activities.

UNCATEGORIZED HEALTH ISSUES

  • Familial Multiple Lipomatosis

    Familial multiple lipomatosis (FML) is a rare condition that is characterized by multiple lipomas on the trunk and extremities. As the name suggests, FML is diagnosed when multiple lipomatosis occurs in more than one family member, often over several generations. The lipomas associated with FML are usually painless, but may impact quality of life as they can be numerous and large. Although the condition appears to be passed down through families in an autosomal dominant manner, the underlying genetic cause is currently unknown. Treatment is based on the signs and symptoms present in each person. RareDiseases.info

  • Inguinal Hernia (right side)

    An inguinal hernia occurs when tissue, such as part of the intestine, protrudes through a weak spot in the abdominal muscles. The resulting bulge can be painful, especially when you cough, bend over or lift a heavy object.

    An inguinal hernia isn't necessarily dangerous. It doesn't improve on its own, however, and can lead to life-threatening complications. Your doctor is likely to recommend surgery to fix an inguinal hernia that's painful or enlarging. Inguinal hernia repair is a common surgical procedure.

    MayoClinic.org

  • ​Multiple Chemical Sensitivity (MCS)

    Multiple chemical sensitivity (MCS), also known as idiopathic environmental intolerances (IEI), is a chronic condition characterized by non-specific symptoms that the affected person attributes to encountering small amounts of common substances, such as perfume. The etiology, diagnosis and treatment of MCS are controversial and still debated among researchers, but a 2018 systematic review concluded that the evidence suggests that organic abnormalities in sensory processing pathways and the limbic system combined with some specific, uncommon personality traits (such as heightened attentional bias) best explains this condition.[1]

    Commonly attributed substances for MCS symptoms include scented products, pesticides, plastics, synthetic fabrics, smoke, petroleumproducts, and paint fumes.[2]

    MCS symptoms are typically vague and non-specific. They may include fatigue, headaches, nausea, and dizziness. Although the symptoms of MCS themselves are real, and can be disabling, MCS is not recognized as a separate, discrete disease by the World Health Organization, American Medical Association, or by several other professional medical organizations

    Taken from Wikipedia: https://en.wikipedia.org/wiki/Multiple_chemical_se...

JOINTS WITH SIGNIFICANT DAMAGE

  • Torn Rotator Cuff (right shoulder)

    In the summer of 2020, I started having pain in my right shoulder. I had it injected with cortisone, and one week later, as I was reaching over in the night to grab something, it felt as if a bomb had exploded in my shoulder. It was one of the most excruciating pains I've ever experienced. X-rays show that both shoulders have been damaged by arthritis. I suspect that the injection weakened the soft connective tissues (this can happen), which led to the tearing. The joint pops and clicks all the time. I've read the radiologist's report of my MRI, and quite frankly, it sounds like there is a lot of damage. My doctor says physio is my only option at this point, given my overall health condition, which is very complex and puts me at great risk if I had surgery.

    The rotator cuff is a group of muscles and tendons that surround the shoulder joint, keeping the head of your upper arm bone firmly within the shallow socket of the shoulder. A rotator cuff injury can cause a dull ache in the shoulder, which often worsens with use of the arm away from the body. Read More...

    Torn Rotator Cuff

  • Knees

    Both knees have significant OA damage and the right nee has meniscus diminishment.

    Osteoarthritis is the most common form of arthritis in the knee. It is a degenerative, "wear-and-tear" type of arthritis that occurs most often in people 50 years of age and older, although it may occur in younger people, too.

    In osteoarthritis, the cartilage in the knee joint gradually wears away. As the cartilage wears away, it becomes frayed and rough, and the protective space between the bones decreases. This can result in bone rubbing on bone, and produce painful bone spurs.

    Osteoarthritis usually develops slowly and the pain it causes worsens over time.

    More info: https://orthoinfo.aaos.org/en/diseases--conditions...

  • Cuboid Syndrome

    Cuboid syndrome happens when the joint and ligaments near the cuboid bone in your foot become injured or torn. It’s also known as cuboid subluxation, which means that one of the bones in a joint is moved but not fully out of place.

    Knowing how to recognize cuboid syndrome and treating it at home can help you avoid further foot injuries.

    The most common symptom of cuboid syndrome is pain on the lateral side of your foot where your smallest toe is. This pain might feel sharper when you put your weight on that side of your foot or when you push on the arch on the bottom of your foot.

    The pain associated with cuboid syndrome might spread to other parts of your foot, too, when you stand on the front of your toes.

SURGERIES & FUSIONS​

  • Bi-Lateral hip replacements (1997 and 2001)

    The hip is one of the largest weight-bearing joints in your body. It is shaped like a ball and socket. Total hip replacement is a surgery to replace the ball at the top of the thigh bone (femur) and the hip socket.

    Surgeons use metal, ceramic, and/or plastic replacement parts.

    Below is an x-ray of both my hips showing the most recent hip revision on the LEFT side (on the RIGHT side when looking at it - the one with the screw showing.) Unfortunately, the revision was not a complete success. I've been left with what appears to be life long sequela. Symptoms include stiffness and nerve damage, both in the muscles of the buttock and inside the femur, and pain running down the side of my leg along with the iliotibial band. It's been 6 years since the surgery, and I still have these symptoms. It isn't very pleasant.


  • Talonavicular Fusion – left foot (2006)

    What is it?

    This is an operation to “fuse” or stiffen a joint in the middle part of the foot. It fuses together two bones, the talus and the navicular bone – hence “talonavicular fusion”.

    Why would it be done?

    Talonavicular fusions are done for two main reasons:

    1. Arthritis of the joints, because of a previous injury that has damaged the joints, ageneralised condition such as osteoarthritis or rheumatoid arthritis, or because the joint is just wearing out for some other reason.
    2. Severe deformity of the foot, such as a flat foot, a club foot or other deformity. Sometimes these can be corrected by breaking and re-shaping the bones, but in other cases it is best to stiffen the joints in the corrected position, particularly if the joints are already stiff or the foot is weak.

    www.esht.nhs.uk

  • Left hip revision surgery (August 4th, 2016)

    My left hip had to be revised in 2016 because it had worn out. It was 17 years old. Unfortunately, it was not a complete success, and I was left with permanent sequela: chronic pain, stiffness, and nerve damage in and around the scar (neuromas). The new implant has also caused me to develop a Neurogenic Bladder. And, as it was discovered when a highly regarded orthopedic surgeon in N.J. reviewed my post-op x-rays, a critical piece of bone is missing to support the implant and distribute the load evenly. This likely explains why I have been left with a dysfunctional hip.

  • Cervical damage (from Ankylosing Spondylitis)

    My C4 and C5 cervical vertebrae were damaged and fused by the Ankylosing spondylitis disease process.

    Ankylosing spondylitis is a type of arthritis that affects the spine. Ankylosing spondylitis symptoms include pain and stiffness from the neck down to the lower back. The spine's bones (vertebrae) fuse together, resulting in a rigid spine. These changes may be mild or severe, and may lead to a stooped-over posture. Early diagnosis and treatment helps control pain and stiffness and may reduce or prevent significant deformity.

    www.webmd.com

  • Cervical Laminectomy and Fusion of Herniated disc at C7/T1

    I had Cervical Laminectomy and Fusion done on March 29th, 2019 with Dr Jeff Golan at the Jewish General Hospital. The surgery involved using 10 screws, 5 on each side along with 2 metal rods to fuse the vertebrae from C3 to T1. Despite some ligering neuropathic symptoms in my arms and hands, I feel that the surgery was successful. I no longer have chronic pain in my neck which is great. And, I don't feel as if I lost any mobility which is also great.

    The arm pain from a cervical herniated disc results because the herniated disc material “pinches” or presses on a cervical nerve, causing pain to radiate along the nerve pathway down the arm. Along with the arm pain, numbness and tingling can be present down the arm and into the fingertips. Muscle weakness may also be present.

    www.spine-health.com



  • Fused sacroliac joints (from Ankylosing Spondylitis)

    My sacroliac joints were fused by the Ankylosing Spondilitis disease process - not with surgery.

    Sacroiliac joint fusion surgery may be recommended to treat sacroiliac joint pain when nonsurgical treatments are ineffective.

    Sacroiliac joint dysfunction can cause pain in the lower back, groin, pelvis, and hips.

    In a fusion surgery, a bone graft and/or instruments are used to encourage bone growth over the sacroiliac joint and create one immobile unit. Joint fusion can effectively reduce pain and instability caused by sacroiliac joint dysfunction or inflammation (sacroiliitis).

    Most cases of sacroiliac joint pain can be treated using pain medication, injection treatments, chiropractic manipulation, and/or physical therapy, and surgery is usually not necessary.

    www.spine-health.com

A few years ago, after reviewing my latest blood work, my Endocrinologist/Integrated Medicine doctor, whom I really like, looked at me and said, "Patrick, you are officially my sickest patient." I can't tell you how hard it was to hear that. I could not believe my ears. I was the sickest he'd seen out of hundreds of patients! Upon reviewing my blood test results, from which he concluded that I was also now suffering from Polyglandular Syndrome, he said, "Your body is giving up." Imagine hearing that? And, upon visiting an acupuncturist (an Ex-Oncologist doctor) in Hoboken, N.J. for treatment, I was also told essentially the same thing, i.e., "You are the most complicated case I have ever had." My endocrinologist actually said, upon my 1st and 2nd visits, that he was taking me on as a "personal challenge." He knew that my case was very complicated and hard to manage and treat, but he committed himself to doing his best to improve my health and quality of life nonetheless. His comments indeed confirmed what I had been saying to doctors and people everywhere for the past 2 to 3 years, "I'm really sick, and no one seems to know how to help me."

Imagine that for a moment? He has patients with cancer and other serious life-threatening conditions, yet I get 1st prize for being "the sickest" just due to the sheer number of compounding health issues I have to contend with. This "sickest patient" comment hit me like a freight train. I came home and was decidedly ready to start trying to turn this ship around - slowly but surely. And as a result, the idea to create BeingInvisible.ca, which I had been mulling over for 2 years was now suddenly front and center in my mind and had become a priority!

I'm at a juncture in my life now. I have to accept what has happened to me, which I can tell you is not easy. I'm working on accepting the new version of me. Several years ago, I adopted the monicker "Bionic Man" because of all the metal implants I have. As a kid, the Six Million Dollar Man starring Lee Majors was one of my favourite shows. However, in my case, the "technology to rebuild" isn't quite as good as it was in the '70s (I'm kidding, of course), so they have not been able to make me "better than he was before…better, stronger, faster…" It's more like "worse, weaker, slower”!

So, over the years, I've had to gradually let go of the old me that once was; the runner, swimmer, skier, skater, dancer, diver, lifeguard, UPS package loader, car washer, toy and packaging designer, entrepreneur, singer, and all-around handyman, and embrace the new me: a person with new and permanent limitations and a "dad bod"!

As a result, I have a newfound sense of duty to educate people about what it's like to live with chronic pain and invisible illnesses. It's important to me at this stage of my life that friends, family, and colleagues have a better understanding of who I am and what challenges I am faced with. The long list of illnesses and disorders has taken a toll, and I can no longer do many of the things I used to do. I have become significantly compromised and even partially disabled. Not so long ago, I could: play street hockey with my son, take him to his games, play shinny, go bob-sledding, hike up Mont Rigaud, wash my car, do home renovations, run my own business, manage an income property with tenants, care for my sick and dying parents, go to band practice once a week, perform as a singer on stage, prepare meals, or go to the local indoor swimming pool twice a week, etc. I can no longer do any of those things. I'm not looking for sympathy or pity, nor am I looking to become a martyr.

I've had it hard for a long time, and life has not panned out as I had imagined, but I know that things could always be worse. And, when things do get worse, they can still get worse - and so on! I'm well aware of that. I think about it every day, and it's what keeps me going - knowing that some poor soul out there (or many souls actually) has or has had it worse than I do. I can still walk, talk, eat, see, and hear. Some people can't do any of those things. However, hearing someone say, "Well, It could always be worse!" doesn't lessen the pain or necessarily make coping any easier for an individual living with debilitating chronic pain. I'm sure it helps to hear those words when you've just narrowly missed losing a finger or a limb and ended up with just a bad cut. Then, I would agree: "It could have been worse!" Phrases like these do not alter that person's own unique experience of living with chronic pain. Suffering - part of the human condition - is something we cannot escape. At one time or another during the course of our lives, we will all experience some form of suffering - some to a lesser degree, and some to a much greater degree. During times of intense suffering, hearing those words may help us keep things in perspective, but they do not change or alter that person's personal experience of suffering.

Some luckier souls manage to slip by and get through life with minimal suffering, while others are plagued with chronic suffering their entire lives, some even from birth. No rhyme or reason or "fairness" comes into play with suffering. Bad people don't suffer more than good people; they neither get sicker nor die younger. It just doesn't work that way. Bad things happen to good and bad people all the time. My best guess is that it must be karmic; if you believe in that sort of thing!

I want to leave you with a few lyrics from "God Part II," a track from U2's Rattle & Hum album. I was 18 when I first heard this song, and even before I became ill, the verse below struck a chord with me.

- Patrick Franc

a.k.a.: Your Friendly Neighbourhood Bionic Man

God Part II – U2

Don't believe them when they tell me
There ain't no cure
The rich stay healthy
While the sick stay poor
I, I believe in love

Comments


  • Heidi Plesz

    Pat - I just read your story on your blog. I can share mine if you want, but I feel silly because it doesn't even begin to compare with what you've been through. I want to say something about high school - in our Messenger chat, you wrote about how exposed you felt and that you were hiding your psoriasis. I want to tell you that the only thing I think of when I think of you at that time (and of course, that's the only time I knew you to think back on, haha!) is your smile and your eyes. I had no idea you were suffering. Honestly, after what you shared about psoriasis, you won't believe it, but you had the best damn hair in school!!

    I have a memory of you-you spoke to me (which was something else because I thought you were cool). I was wearing a t-shirt that said "Pass the Coochi" (maybe? I don't remember exactly), and you smiled, wiggled your eyebrows and started singing "Pass the Dutchie," haha...it was a dumb moment, but I felt...visible, because you acknowledged me. See? Small moments of kindness. I never forgot that little thing, and it always makes me smile.

    You were funny and kind and silly and laughed a lot. I thought you were great. I'm sure everyone did. Maybe part of what made you so kind was what you were going through. Empathy doesn't always come easy to teens - it's in there, but there's a lot of ego in the way. Maybe you saw the world through eyes that could imagine everyone's invisible struggles, even then. You're a strong guy, Pat. I feel lucky to know you, and I hope we can stay in touch. Luc also sends his best. Be tough — deep breaths. One day, one moment at a time.

    • Patrick

      Heidi, WOW! I don't know what to say. I had no idea I was perceived that way in high school - as one of the "cool" ones. Thanks for sharing this with me, it really means a lot.

      PS: My Corey Hart spikes hair cut was my signature! lol!

  • Susan Tierney

    Hi Pat,

    Your challenges are overwhelming to me. Your strength of spirit is inspirational. Your story and perseverance and the way you write are amazing. I don't want to annoy you with questions, so you can always answer - been there, done that. It must get tiring explaining things over and over. I only ask in case there is information to be shared or gained that can help.

    I have UMCTD: Undifferentiated Mixed Connective Tissue Disease. For the most part, I am well. My rheumatologist feels that some of my issues are a result of aging and not the disease. My mom had various health issues, rheumatoid arthritis being one of them. She went through a lot of complicated health issues which probably accounts for most of what I know. I also know different people with diseases that have contributed to my understanding.

    Thank you. Keep fighting. Keep sharing. I am sad that you have to go through this with no promises for how well your health issues will be managed in the future. I don't think I would have that kind of determination given the same struggles. I am sorry that this is your burden and cross to bear, but I have to believe that there is a reason why this is happening to you. Your website, your story, and your fight is meant to teach us. Thank you again, and I hope you will feel better with each passing day and that on the days where you are struggling physically, hopefully, mentally and emotionally you'll be stronger and happier in spite of the pain.

    Keep in touch! Wishing you a happy and healthy day.

    • Patrick

      Susan, thank you so much for sharing part of your story with me and for your kind words of support and encouragment! I am very grateful.

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