…I am not invisible. 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 suspect that there may be anything wrong with me. Nothing about my outward appearance reveals what’s 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 which indicate that I have reached middle age and some sunken dark circles under my eyes, I look fairly well for a 48-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 19-year-old son! I’m almost 6’ tall, I’m not overweight, (although I’ve filled out in the midsection more than I’d like to admit to) 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.
was a used car sitting on a car lot, I could imagine someone looking at
me and saying, “Hey! This one looks like it’s 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?
“What’s this? Artificial hips? But you are
so young? What happened? And I see you have a screw in your foot! Was
it a fracture? OMG - your neck is completely fused, and so are your
sacroiliac joints. You have a herniated disc at C7/T1 where your
cervical spine meets your thoracic spine. You say it hurts all the time?
And you say it’s causing your arms and hands to go numb with pins and
needles depending on the position of your neck and head? Your TMJs (jaw
joints) are quite damaged. 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? 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 as well?
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.
What’s going on here? You have arthritis? How can this be? 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!”
It’s been over 25 years now since I was first diagnosed with an incurable, degenerative, chronic autoimmune disease. A lot has happened in those twenty-five years. Ironically, my story began as a child with a visible disease, Psoriasis, which first appeared on my scalp. I can 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 of 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 disease that is visible 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 somehow
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 laying in the sun in my back yard, 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 Psoriasis, Psoriatic 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 a lot more about what I’ve been through than others. But even for those of you 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 with the rest of the world, what it’s really 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 one category - arthritis. One word to cover 100 different types isn’t necessarily a good thing. It makes it that 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, 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 have associated the word “arthritis” with the kind of pain that an athlete or physically active person might experience when they exercise, garden, or do any task that seems demanding - or - just being part of the natural aging process. These milder forms of arthritis do exist, the ones that come from aging and the normal wear and tear on the joints, and can be relieved with over the counter drugs. However, the autoimmune types of arthritis are for more severe; these are serious conditions that can affect more than just the joints. They also attack tendons, ligaments, muscles, and even organs. 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. I have had: a screw put in my left foot to fuse a damaged Talonavicular joint, knee synovectomies, 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 last fall for a second opinion regarding my herniated disc - the same surgeon who did the cervical fusion procedure on my brother in law David. While I was there, he also reviewed the x-rays of my hips and he was able to tell me why, after more than 2 years since the surgery, I was left with chronic pain and dysfunction - something neither of my orthopedic surgeons could do back in Montreal (the doctor who performed the surgery as well as my previous doctor who is now retired). As it turns out, there was a critical piece of bone missing on which the weight is supposed to get distributed. This is apparently something that got overlooked by my surgeon. 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 conditions that have gone from 2 (Psoriasis and Psoriatic Arthritis) to over 18 in the past 5 years! Yes, that’s right; 18 health issues that all require daily management and that have severely affected my quality of life. Just 5 years ago, I was only taking 2 medications: A biologic drug that I self-injected every 2 weeks, and low dose Prednisone. I'm now taking 21 different medications daily, with some of them spread out in 4 doses throughout the day.
AUTO-IMMUNE ILLNESSES (and related)
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 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
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
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
POLYGLANDULAR AUTOIMMUNE SYNDROME (ENDOCRINOLOGICAL)
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:
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.
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
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
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
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.
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.
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:
CARDIO/RESPIRATORY RELATED PROBLEMS
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:
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).
Sleep apnea, also spelled sleep apnoea, is a sleep disorder characterized by pauses in breathing or periods of shallow breathing during sleep. 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
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 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
, 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
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
What is SIBO?
Small intestinal bacterial overgrowth (SIBO) is a serious condition affecting the small intestine. It occurs when bacteria that normally grow in other parts of the gut start growing in the small intestine. That causes pain and diarrhea. It can also lead to malnutrition as the bacteria start to use up the body’s nutrients.
SIBO symptoms mainly affect the gut. They may include:
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 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
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
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
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.
SURGERIES & FUSIONS
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. They may be attached to the bones in one of two ways:
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:
My left hip had to be revised in 2016 becuase it had worn out. It was 17 years old. Unfortuanlty, 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 last fall, a critical peice of bone is missing in order to proepry support the implant and distribute the load evenly. This explains why I have been left with a dysfunctional hip.
My cervical vertebrae have been 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
A cervical herniated disc is diagnosed when the inner core of a disc in the neck herniates, or leaks out of the disc, and presses on an adjacent nerve root. It usually develops in the 30-to-50-year-old age group. While a cervical herniated disc may originate from some sort of trauma or neck injury, the symptoms commonly start spontaneously.
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
My sacroliac joints were fused by the Ankylosing Spondilitis didease 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
Recently, 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. Out of hundreds and hundreds of patients, I’m the sickest he's seen! 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 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, hard to manage and to treat, but he committed himself to do his best to improve my health and quality of life nonetheless. His comments certainly 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”. I should also add that my doctor did follow up with, “But, we are going to make you better! It will take time; we have to go very very slowly, but we’ll make you better.”
that for a moment? How many doctors do you know can be frank and
honest, while at the same time be genuinely empathetic and caring in
their demeanor? Not many I’m sure. 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”
thing hit me like a ton of bricks. that 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 what I call, “Patrick .2.0”. 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”!
a result, I have a new found 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. 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 in front of small to medium size
crowds, 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 who is 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 such as 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.
luckier souls manage to slip by and get through life with very little
suffering, while others are plagued with chronic suffering their entire
lives; some even from birth. There is no rhyme or reason or “fairness”
that comes into play with suffering. Bad people don’t suffer more than
good people, and neither do they get sicker or 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’d like 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