This will be a short and sweet update! I skipped posting last week because I did not have anything new to report. It’s June 3rd today, a day that I always remember to celebrate. Why? When I had my first hip replaced, back in 1997, after my two-week stay in the hospital, I was strapped into a wheelchair, put on a medical transport bus, and taken to a rehabilitation hospital. It was a beautiful sunny summer day, and I was the only one on the bus. The bus driver had the radio on, and just as we as we were departing, Corey Hart’s song “The 3rd of June ” came on the air. It was the middle of July mind you, but the song’s mellow, summery mood comforted me and gave me hope. Every year since then, I’ve played the song on June 3rd. When my wife wakes up, I’ll do as I do every year, and surprise her by playing the song and we’ll end up slow dancing to it in our living room. (Slow dancing is all I can manage now!)
I did get the report back from the X-Rays I had done of my ribs following the incident that took place a couple of weeks ago. I have a fracture of my left 4th rib with mild displacement. Thankfully, I’m not in any pain. There is some mild discomfort only when pressing on it.
In February of 2018, I slipped on some black ice in my driveway and ended up with a “subacute “ fracture of the 12th and 9th ribs. Those hurt for a long time! They are still sensitive to the touch.
On another note, in keeping with me reinventing myself, I decided to have some fun and have my hair dyed. I was looking for a light, sandy brown colour and even sent photos to my hairdresser a week before my appointment. However, she messed up, and I ended up with muddy “suicide blonde” hair with a tinge of ginger! Although my normal hair colour appears to be dark brown, I also have red highlights in my hair. Those of you who know my sister know that she is a real redhead! So it’s in our genes. Anyhow, the hairdresser made three attempts at rescuing it, but to no avail - my hair would no longer respond. I was supposed to return one week later to have her fix it, but during that time, it grew on me, so I decided to keep it!
Wondering why I always have sunglasses on? It’s to hide the deep dark circles under my eyes that make me look tired and sick – because I am tired and sick! Although, you'd never know it by looking at these photos would you? That's called living with an invisible disease.
Thanks for reading.
Patrick 2.0 - Your Friendly Neighbourhood Bionic Man
This past Friday marked seven weeks post-op and one week free from wearing my neck collar. I was surprised to see how easily the transition went from collar to no collar. I was expecting to have more pain or difficulty holding up my head, but quite to the contrary, I found myself experiencing very little pain or discomfort. My neck feels solid now; it's less rickety with no more of the "crunching" that I used to feel and hear when I moved my head from side to side or up and down. As far as the range of motion, I had been told I would lose about 6º to the left and the right; however, I really can't say that I feel that. And to his credit, the doctor did say that it would be imperceptible. It almost feels like I can turn more than before if you can believe that! I think it's because there is no more pain when I turn my head, although my range of motion is still limited compared to a healthy non-fused neck. I was also able to go for my first massage in almost two months and found that I could comfortably place my head in the padded horseshoe without any discomfort in my neck. Before my surgery, I was always uncomfortable laying on my stomach with my head in the horseshoe, and lifting my head up and out of it after a half hour or so was difficult and painful. I've also been able to get back to driving my car, which is great. So as far as my recovery from surgery, things are going quite well, and I'm really pleased with the progress and the results so far. I've also discovered that the hump I had where my cervical spine meets the thoracic is gone! And, my head is no longer being pitched forward – my posture has improved. That's the good news!
I'm still battling severe IBS symptoms which are at the worst they've ever been. Some of you may already know that I had become dependent on daily enemas for about eight months going back to June of 2018 because of my chronic IBS. After being hospitalized in late January 2019, I was able to kick the habit and had been enema free for about three months, something I was quite proud of. Bowel movements continued to be a challenge, but I was managing to get by. However, recently, I have found myself in a state of crisis and have had to go back to daily enemas. It's disappointing, depressing, and obviously, time-consuming. I had quite enjoyed the extra time that I had when I was enema free, although I was still – and still am – more or less chained to my home to be close to a bathroom. Severe IBS ruins people's lives. I can't tell you how many posts I've read on IBS Facebook groups where people share their very personal "living nightmare" experiences, something I can attest to. Like others on Facebook, I have been driven to suicidal thoughts due to the symptoms of IBS – that's how bad it can get. When it's at its worst, you really do wish you were dead. A new survey found that one in 10 IBS-D sufferers have suicidal thoughts. I'm one of those 10.
AND THE UGLY
I have had several severe emotional breakdowns recently, including one last week that took me over the edge. I was riddled with all sorts of various chronic symptoms such as: joint and muscle pain, abdominal discomfort, extreme bloating, nausea, manifestations of Sjôgren's Syndrome (itchy watery eyes and dry mouth), cramping in my legs and feet, swelling in my legs and feet, hip pain, symptoms of Eosinophilic bronchitis and Eustachian dysfunction (blocked ears) etc. I finally lost it. I was lying face down on the bathroom floor sobbing – my wife Sherrie by my side consoling me as best she could – when I suddenly got up filled with anger, frustration, bitterness, and an overwhelming urge to smash anything in sight. I slammed open one door with my hands, and then ran my shoulder into another door like a hockey player does when checking a player into the boards, essentially breaking down the door. I ended up destroying one of the frames and the latching plate. Imagine? Me, with all of my physical limitations and frailties, ramming my shoulder into a door with no regard for the consequences. I injured my ribs and have been nursing them daily since then, but thankfully, my neck is fine. That's how crazy I got. I went from mild-mannered Bruce Banner to The Incredible Hulk in a matter of seconds. Then I collapsed on my bed and continued sobbing uncontrollably. I had reached my limit. My mind had been warped to the point of reaching a Momentary Lapse of Reason. As a pacifist, I'm against all forms of violence, so I'm not proud of this. But there is only so much a person can take all at once before they go stark raving mad. It just goes to show how much it can affect a person's mental health. I wasn't sure if I should share this episode, but I realized that if I didn't, I would be doing a disservice to anyone following my story. I am committed to sharing the truth as it evolves, no matter how ugly it may get at times.
Thanks for reading.
Patrick 2.0 - Your Friendly Neighbourhood Bionic Man/Incredible Hulk
Well, folks, I made it! I'm at six weeks post-op today, and that means one thing - I'M FREED FROM WEARING THE NECK COLLAR!! WooHoo! The funny thing is, I'm sitting at my desk writing this, and I'm still wearing it! It's become a sort of "love by comfort" thing for me at this point. It provides comfortable support for my head and neck when I'm at the computer. (Okay, I just took it off! I have to get used to holding up the weight of my head again.)
I had my first therapeutic massage yesterday after two months of absence (I go every two weeks). I was able to lay face down on my stomach with my head in the horseshoe-shaped padded cushion without any pain or discomfort. And when it came time to lift my head out and flip onto my back, for the first time in years, my neck did not "crunch," and I had no pain. It was a big deal for me to see that the surgery had corrected a problem that has been dogging me for so long. As far as the range of motion goes, I don't feel like I've lost any, which is also a big deal. My cervical spine feels like it's been solidified and made safe to use again if that makes any sense. I continue to have neuropathic symptoms in my arms, hands, and feet, but I'm told that they should hopefully, pass with time.
My IBS, which is a significant obstacle, and can be quite debilitating at times, continues to be my biggest challenge. I can honestly say, without a shadow of a doubt, that coping and living with IBS has been harder than living with Psoriatic Arthritis and Ankylosing Spondylitis. Hard to imagine eh? Before my IBS, I was able to live a reasonably normal life. I could manage my invisible diseases with medications and lifestyle - hence: "being invisible". But now, the IBS has ultimately jeopardized my quality of life. I am more or less housebound because I never know what to expect. I'm doing a lot of research at the moment, especially on dedicated IBS/SIBO Facebook groups to try to find what works for me. Diet is the most crucial consideration. However, it's tough to figure out what foods are trigger foods. Now that I'm "collar-free", I'm going to take an appointment with a lab in Ontario to have a food sensitivity test done which will undoubtedly be quite helpful.
I recently submitted swab samples of my GUT, NOSE, SKIN, GENITALS, and MOUTH to a private lab: www.ubiome.com. They found two elusive bacteria in my gut, one of which is called Rahnella and is pathogenic in humans. Not good. I'm currently waiting to hear back from my Infectious Disease doctor to see what can be done to eradicate it. From previous tests that were done last year, I also have other harmful bacteria, candida, and parasites in my gut. This is what makes managing the IBS/SIBO so tricky. Anyhow, with my surgery behind me, and a big chunk of my recovery out of the way, I can now dedicate more time to finding a solution to this terrible IBS condition. If you are someone you know suffers from IBS and has any tips, please reach out to me and share! The more information I can gather from people living with it, the better.
I thought I’d close this with a happy moment. My massage therapist had these cool looking plant holders in her bathroom. I had no idea what they were. She told me they were called "Groots," and that they were Marvel action heroes from the movie "Guardians of the Galaxy" which I've never seen! Anyhow, they just really looked so friendly and happy, I had to post the pic!
Thanks for reading!
Patrick 2.0 - Your Friendly Neighbourhood Bionic Man
I'm at five weeks post-op today! Just one more week to go before I am freed from wearing my neck collar. I've seen a significant improvement over the past two weeks. No more "sunburn" feeling on my neck, shoulder blades and trapezoids, less tension and stiffness, and more comfortable range of motion.
I've been able to take on some easier household chores like doing dishes. I also continue to walk on my treadmill, or outside if the weather permits, for at least a half hour a day, and up to an hour at times. Aside from my IBS, which is a significant obstacle and quite debilitating at times, my neck surgery recovery is going very well in my estimation.
My neuropathic symptoms in my arms and hands seem to be improving which is reassuring. And my scar is continuing to look better and better each day aside from some redness on either side which, from experience, can take several months to vanish completely. All in all, just good news to report at this time which is lovely!
Patrick 2.0 - Your Friendly Neighbourhood Bionic Man
I saw my neurosurgeon, Dr. Golan, at the J.G.H. this past Tuesday for my post-op follow up. I had some concerns about new neuropathic symptoms I developed shortly after coming home from the hospital. However, they have improved considerably in the past ten days thankfully. He was not too concerned and suggested that there is likely still ongoing inflammation around the vertebrae that were fused and also possibly some irritation perhaps caused by a small remnant of the herniated disc that remained. He feels that my symptoms should pass with time.
He looked at my incision and said that it had healed nicely - and I agree, it has. When I told him where it was that I felt the “burning” sensation in my neck, he commented by saying, “Yes, that’s where the muscles were cut”. Ouch! Up until yesterday, the pain was consistent every day. But it seems I’ve turned a corner. The past two days have been much better.
I asked him if he would kindly show me the images of the CT scan I had done shortly before leaving the hospital. I wanted to see my “new neck”! Well, here they are. It’s really rather incredible to see. I’ve got 2 rods and 10 screws holding my neck together now. Unbelievable.
a.k.a. Your Friendly Neighbourhood Bionic Man
Something unbelievable happened to me yesterday morning. I was alone at home, and I decided that I would sit at the kitchen table to eat my breakfast rather than in the living room where I usually sit. I was going to sit in my usual spot, but I changed my mind and sat on the opposite side of the table so that I could see outside and admire our funky psychedelic cat poster.
I removed my neck collar, as I always do when I eat. I was sitting there, eating, while holding an ice pack to the back of my neck, when suddenly, the chair collapsed under me and I fell on my right side (thankfully) on to the tile floor - without my neck collar! I was in shock. I could not believe that the chair had just suddenly crumpled beneath me! These are wooden chairs that I purchased with a kitchen table at IKEA seventeen years ago when I first moved into my apartment shortly after becoming a bachelor. Since developing Cushing’s Syndrome 2 years ago, which causes the body to store excess fat, I’ve gone from my average weight of 155lb to 195lb. But I never thought a chair would collapse beneath me!
Thankfully, I was not seriously hurt. Other than some mild scraping on the inside of my legs, a twinge in my right knee, and some soreness around my hip and shoulder that bore the brunt of the fall, I’m fine. My neck did get a jolt though, and I did feel some discomfort in my spine after falling.
So what is the take away from this experience I asked myself? Well, two things: 1) I could have been injured or done damage to my new fusion, but I walked away unscathed. And 2) I’m so glad it didn’t happen to mother-in-law, who is coming here on Monday for Easter despite being almost housebound now due to health complications. Who knows what could have happened? A broken arm, tailbone, wrist, or hip?!
Now that I’ve got that out of the way, here is the latest update on my recovery.
Friday, April 19th, marked precisely three weeks post-op. I’ve got another three weeks to go before being set free from the collar! My wife drew a numberless artsy calendar on our chalkboard for me to keep track of the days and mark them off as I go along.
Last week was tough; I found myself more than once breaking down emotionally because I was so overwhelmed with multiple symptoms from the various illnesses that I have. I do not just have to deal with the recovery from surgery, which in and of itself is quite difficult, but also dealing with chronic IBS, hip pain, Sjögren’s syndrome (dry eyes and mouth), neuropathy, joint pain, etc. Having said that, the last 4 days have been much better. I’m having less and less pain it seems in and around the area of the surgery, and my neuropathic symptoms have improved as well. Although, I continue to have an intermittent burning sensation in my neck and shoulder blades and on-and-off weakness and tingling in both arms and hands. Following an email I’d sent out the week before to my doctor sharing my concerns about the symptoms I was having, the pre-op nurse called me last week to see how I was doing. I had an appointment on the 30th, but, based on our conversation and the concerns I have, she moved me ahead to the 23rd. So I’ll be posting another update next week after I’ve seen my surgeon!
I want to close this update with a positive tidbit. Last Thursday, I was able to attend “Alegria,” the Cirque du Soleil Show in the Old Port that has been resurrected due to its popularity. I had seen the original version about 20 years ago and remembered how fantastic it was. My wife and I were joined by another couple and a close friend of Sherrie’s, and we all were mesmerized by the show. I’m so grateful that I had a “good day” that day which allowed me to attend and enjoy the majesty and wonder of this magnificent show. I’ll be dedicating my next chapter to it on my BLOG at www.beinginvisible.ca.
Here's a quick Sunday morning update. This past Friday marked two weeks to the day post-op. The CLSC nurse came by to remove my staples, and it went smoothly with minimal discomfort. The incision has healed beautifully, and I think that it will hardly show once it has completely mended. Kudos to my surgeon for closing me up so nicely.
I was also given the green light by my doctor to use my therapeutic hot tub. I've been in twice now, and it has helped relieve the tension that had accumulated in my upper back, i.e., neck, shoulder blades, and trapezoids. I still have "burning" pain that comes and goes depending on the position of my neck while wearing the collar. I use Xylocaine, a topical medication used to numb tissue, which helps reduce the burning sensation considerably.
In addition to managing and coping with the recovery of my neck surgery, I've had several challenging days this past week as I struggle to deal with other compounding health issues like severe IBS, Sjögren's Syndrome, Eosinophilic bronchitis, and Eustachian Tube Dysfunction.
Yesterday was dreadful. I was unwell all day. But today is a good day, which is why I'm at my desk this morning working on an update. I'm also going to be graced by a visit this afternoon from two band members, Bryn and Pat, that I used to perform with and whom I've not seen in a few years. The past five years have beaten me up. I'm not the same guy they once knew; I've been changed physically and mentally by chronic debilitating diseases that have wholly robbed me of the life I once had. I'm in the process of reinventing myself and working at accepting what has happened to me. So they are going to see Patrick 2.0 for the first time today!
I had my Posterior Cervical Laminectomy & Fusion surgery done last Friday, March 29th at the Jewish General Hospital. According to my doctor, Dr. Jeff Golan, and his colleague, Dr. Couturier, who both saw my CT Scan results, and based on my symptoms post-op, the surgery was a success. That is such a relief! I now have 10 screws in my neck holding everything together. The post-op recovery was brutal. I awoke in the middle of the night in excruciating pain and quaking with shivers. I was in Dilaudid withdrawal; the pain was on par with a kidney stone attack I had several years ago that I have personally rated as the most painful experience of my life. In a state of total panic, I called the nurses to come and see me. I was told to press on my clicker to give me a dose of Dilaudid via IV, so I did that. The problem was that I had to click it every 7 minutes to get a dose. How can you sleep if you are supposed to press on a button every 7 minutes?! I explained that I needed something that would have a slow release long-acting effect, but I was told that the doctor would need to prescribe it! I also called my wife and asked her to come and be there for me to make sure that my needs were met. She got up at 2:30 AM and drove from St-Lazare to be there with me. It was such a relief knowing she was there. The next day I started receiving the slow release long acting dose which really helped. I was also prescribed Flexeril, a muscle relaxant which also helped a lot. Thanks to those additional meds, the following nights were much better, sleeping right through till the morning. I came home 5 days after the surgery and have been doing reasonably well. Today, the nurse from the CLSC came by to change my bandage. She will be back on April 12th to remove the dressing and the staples.
My wife Sherrie has been incredible. She slept at the hospital 3 nights in a row on a couch in a lounge area just down the hall from me! I was quite compromised; eating was almost impossible due to the pain I had when I was sitting - a searing burning sensation down my neck and trapezoids that was unbearable. So I had to lay back on my bed and be spoon fed by my wife. I’ve never been spoon fed before, but I can tell you, it’s quite humbling. She made several trips to coffee shops and restaurants to bring me some “good” food and some treats. I’m so grateful to have had her there to take care of my needs. And I'm so thankful to all of you who have contributed to my crowd funding page.
a.k.a. Your Friendly Neighbourhood Bionic Man