Tuesday, October 8, 2019
Thursday, September 5, 2019
The surgery went well and after the recovery room I was taken to a semi-private room that was too small to accommodate my power wheel chair, a chair for a visitor and the table device that all hospital rooms have. There was a ceiling lift that traversed both beds in the room and in order to use it all the privacy curtains had to be pulled out of the way exposing all to the world, both me and my room mate.
My stay had all the common highlights, poor food, people in and out all night turning on lights and waking you up to check the vitals etc. What was new to me was the diaper. Never in my adult life had I been forced to wear diapers and pull ups and I soon learned that this was done more to help with the staff shortage than for my personal health and wellbeing. I don't know how many times that I asked for a urinal and was told to just do it in the diaper, it will be changed soon. I know this is gross but the first few times that you feel urine running up your back and down your legs it is a real eye opener. It is a humiliating experience only to be superseded by feces squashing out between your butt cheeks and having to lie there in the fouled diaper until some one was able to clean me up. Please note that the staff were great and that the discomfort is more due to budget restrictions (read staffing restrictions and cutbacks) than to any other reasons.
To be fair, the first few days were due to surgery and to getting on with the healing process, the rest of the time it was because it was faster to leave me in diapers and clean me up later than to put a sling on me, lift me with a ceiling lift and set me on a commode chair that could be rolled into the bathroom. This would be true of all patients, not just an IBM'er like me who couldn't walk un assisted.
I had asked for a private room when I was admitted and was fully prepared to pay the extra $50 per day. When taken to the semi private room that I described above I was told no private rooms were available. 4 or 5 days later I asked again and was moved in short order to a private room that was great for space but right at the very noisy nursing station. I was much happier here but still can't understand why my requests to "Please close the door" were ignored.
After several days I finally brought my personal Support Workers in for mornings and evenings to look after me when I needed it and not only when staff was available.
When the surgeon finally said I was ready to leave the hospital I was elated until told that I could not go home and would be sent to a rehab facility to further my getting better. I felt good but was very weak and swollen up and it seemed like a good idea at the time. After 3 different Occupational Therapists visited me on 3 consecutive days and tried to get me to stand I was interviewed by a nurse from a "Transitional Care Unit" who judged me acceptable for the facility. Within a couple of hours I was taken by ambulance to this TCU and installed in a very nice private room with a bathroom large enough to hold a dance in. This is another story that I will get to on my next post.
My stay had all the common highlights, poor food, people in and out all night turning on lights and waking you up to check the vitals etc. What was new to me was the diaper. Never in my adult life had I been forced to wear diapers and pull ups and I soon learned that this was done more to help with the staff shortage than for my personal health and wellbeing. I don't know how many times that I asked for a urinal and was told to just do it in the diaper, it will be changed soon. I know this is gross but the first few times that you feel urine running up your back and down your legs it is a real eye opener. It is a humiliating experience only to be superseded by feces squashing out between your butt cheeks and having to lie there in the fouled diaper until some one was able to clean me up. Please note that the staff were great and that the discomfort is more due to budget restrictions (read staffing restrictions and cutbacks) than to any other reasons.
To be fair, the first few days were due to surgery and to getting on with the healing process, the rest of the time it was because it was faster to leave me in diapers and clean me up later than to put a sling on me, lift me with a ceiling lift and set me on a commode chair that could be rolled into the bathroom. This would be true of all patients, not just an IBM'er like me who couldn't walk un assisted.
I had asked for a private room when I was admitted and was fully prepared to pay the extra $50 per day. When taken to the semi private room that I described above I was told no private rooms were available. 4 or 5 days later I asked again and was moved in short order to a private room that was great for space but right at the very noisy nursing station. I was much happier here but still can't understand why my requests to "Please close the door" were ignored.
After several days I finally brought my personal Support Workers in for mornings and evenings to look after me when I needed it and not only when staff was available.
When the surgeon finally said I was ready to leave the hospital I was elated until told that I could not go home and would be sent to a rehab facility to further my getting better. I felt good but was very weak and swollen up and it seemed like a good idea at the time. After 3 different Occupational Therapists visited me on 3 consecutive days and tried to get me to stand I was interviewed by a nurse from a "Transitional Care Unit" who judged me acceptable for the facility. Within a couple of hours I was taken by ambulance to this TCU and installed in a very nice private room with a bathroom large enough to hold a dance in. This is another story that I will get to on my next post.
Monday, June 3, 2019
Early Days - Diagnosis
I had had an ongoing problem with diverticulitis which, when inflamed, caused me to have severe pain in the lower left side of the abdomen. For several years I had always carried antibiotics with me and was under the doctors orders to start taking them as soon as the pain appeared. I was also told to take the next 10 days of antibiotics if it was still hurting after the first 10.
I found myself in this situation in 2001 the day before we were to leave on a yacht charter in the Grenadines. My abdomen was so sore that I thought I better check it out before we took off and went to see my family doctor. While in his office he set me up with an appointment for an ultrasound downstairs and I did this before leaving. Half way home I got a call on my mobile phone telling me to go straight to a hospital where there was a surgeon waiting to see me. Apparently they had seen something in the ultrasound that was potentially life threatening and wanted me to see a surgeon right away. On arrival at the hospital I was whisked into a small side room where a doctor came in and palpitated my belly before sticking a needle into the area and drawing out some liquid. The colour of the liquid prompted him to say that I had an infection that had turned into peritonitis and was extremely lucky and admitted me to the hospital post haste. I was later told that had I flown to the island of St. Vincent as was the plan and sailed away on the charter I could have died before being able to get to a medical facility with the required resources to help.
This has nothing to do with my IBM but did lead to several weeks on my back with heavy doses of antibiotics, some IV in the hospital and some at home until enough poison had been pulled out of my abdomen to allow them to do a colon resection. It was because of this forced inactivity that the muscle loss became apparent when I could no longer walk up stairs.
I found myself pulling on handrails, lifting a leg up to go up a step and then having to push down on the knee to help lift myself up. I needed a cane to walk and going down stairs or walking down a slope became frightening. I was too young for this being only 51 and in good shape at the time.
My family doctor referred me to a rheumatologist who in turn referred me to a neurologist who diagnosed Inclusion Body Myositis. I was sent to a plastic surgeon for a muscle biopsy and then on to another neurologist for a second opinion which was given as Poly Myositis with a few Inclusion Bodies. After a few months under her care I had to stop seeing this neurologist and stepped back to see the rheumatologist that I had seen first. I told her about my problems dealing with both of the neurologists that I had been sent to (which I will detail in another post) when she found me a rheumatologist in a downtown Toronto hospital that had a reputation for ending up with all the IBM patients. This lady is an amazing doctor and person who could finally talk to me sensibly about the disease and give me some hope going forward. Here I am almost 20 years later and still most doctors that I see don't know what the disease is and how it affects the body. I am still under her care today and can't thank her enough for helping me to deal with the constant changes and issues. She recently told me that she is making plans to retire and all I can say is that she will be missed by all her thankful patients. With her and after having another pathologist review the biopsy I got a definitive diagnosis of Inclusion Body Myositis. The rest, as they say, is history.
I found myself in this situation in 2001 the day before we were to leave on a yacht charter in the Grenadines. My abdomen was so sore that I thought I better check it out before we took off and went to see my family doctor. While in his office he set me up with an appointment for an ultrasound downstairs and I did this before leaving. Half way home I got a call on my mobile phone telling me to go straight to a hospital where there was a surgeon waiting to see me. Apparently they had seen something in the ultrasound that was potentially life threatening and wanted me to see a surgeon right away. On arrival at the hospital I was whisked into a small side room where a doctor came in and palpitated my belly before sticking a needle into the area and drawing out some liquid. The colour of the liquid prompted him to say that I had an infection that had turned into peritonitis and was extremely lucky and admitted me to the hospital post haste. I was later told that had I flown to the island of St. Vincent as was the plan and sailed away on the charter I could have died before being able to get to a medical facility with the required resources to help.
This has nothing to do with my IBM but did lead to several weeks on my back with heavy doses of antibiotics, some IV in the hospital and some at home until enough poison had been pulled out of my abdomen to allow them to do a colon resection. It was because of this forced inactivity that the muscle loss became apparent when I could no longer walk up stairs.
I found myself pulling on handrails, lifting a leg up to go up a step and then having to push down on the knee to help lift myself up. I needed a cane to walk and going down stairs or walking down a slope became frightening. I was too young for this being only 51 and in good shape at the time.
My family doctor referred me to a rheumatologist who in turn referred me to a neurologist who diagnosed Inclusion Body Myositis. I was sent to a plastic surgeon for a muscle biopsy and then on to another neurologist for a second opinion which was given as Poly Myositis with a few Inclusion Bodies. After a few months under her care I had to stop seeing this neurologist and stepped back to see the rheumatologist that I had seen first. I told her about my problems dealing with both of the neurologists that I had been sent to (which I will detail in another post) when she found me a rheumatologist in a downtown Toronto hospital that had a reputation for ending up with all the IBM patients. This lady is an amazing doctor and person who could finally talk to me sensibly about the disease and give me some hope going forward. Here I am almost 20 years later and still most doctors that I see don't know what the disease is and how it affects the body. I am still under her care today and can't thank her enough for helping me to deal with the constant changes and issues. She recently told me that she is making plans to retire and all I can say is that she will be missed by all her thankful patients. With her and after having another pathologist review the biopsy I got a definitive diagnosis of Inclusion Body Myositis. The rest, as they say, is history.
Wednesday, May 29, 2019
Early Days - First Indications of a Problem
Thinking back prior to my diagnosis it's apparent that I was experiencing symptoms long before it was recognized it as a medical problem. On a cruise to the Bahamas in 1992 I was walking down East Bay Street going to Potters Cay where the local fisher folk have stalls under the bridge to Paradise Island. I stepped of a curb and fell flat on my face. I was holding a brand new camera in front of me and was more concerned about it than myself. There I was....full face plant. I think I broke the camera and my wife (Ruth-Ann) was standing beside me saying "What happened??".
This was one of many, many falls to come. I fell down our friends front porch steps, fell downstairs at my mothers house, started tripping on uneven ground and even fell a couple of times getting out of my pick-up truck.
It is interesting to note that at that time I was quite fit. I played squash, worked out at Golds Gym and did a little body building. We skied all winter and sailed our C&C 35 sailboat all summer. Between seasons we toured around on our Honda GL1200 Goldwing motorcycle. Life was good and we were having lots of fun.
On the ski hills Ruth-Ann and I were probably advanced, intermediate skiers. We could ski anywhere but avoided steep narrow trails and mogul runs as neither of us could afford an injury keeping us from work. I started to have problems controlling turns and lifting my feet up in deeper snow. Powder skiing lessons at Whistler were fun but a complete failure for me as I could not get on to that 'back on the tails' bouncing technique you need to make turns in deep snow. My skiing career ended abruptly on a nice smooth, groomed hill at Craigleith Ski Club in Collingwood. I stopped on a small rise to wait for my wife and some friends to catch up, started off with a skating stride, caught a tip and ripped the medial collateral ligament in my right knee. My last run down the hill was in a ski patrollers toboggan. No more skiing for me and in retrospect, I think this injury was caused by the increasing loss of muscle in the quads.
Sailing had similar issues as well. Stepping over the cockpit combing from the deck to the seat was a long step that surprised me a few times and left me laying on the cockpit floor. Every time it was a knee that let me down.
It was 10 years and many falls before I was diagnosed with Inclusion Body Myositis. My response to the weakness, the falling and the muscle shrinkage was to join a health club and hire a trainer and get back in shape. This was probably what we all would do but hard workouts are not in your best interest with IBM.
I was amazed to learn that we have so many muscle cells in our bodies that we can loose 60% to 70% before we notice the loss.
This was one of many, many falls to come. I fell down our friends front porch steps, fell downstairs at my mothers house, started tripping on uneven ground and even fell a couple of times getting out of my pick-up truck.
It is interesting to note that at that time I was quite fit. I played squash, worked out at Golds Gym and did a little body building. We skied all winter and sailed our C&C 35 sailboat all summer. Between seasons we toured around on our Honda GL1200 Goldwing motorcycle. Life was good and we were having lots of fun.
On the ski hills Ruth-Ann and I were probably advanced, intermediate skiers. We could ski anywhere but avoided steep narrow trails and mogul runs as neither of us could afford an injury keeping us from work. I started to have problems controlling turns and lifting my feet up in deeper snow. Powder skiing lessons at Whistler were fun but a complete failure for me as I could not get on to that 'back on the tails' bouncing technique you need to make turns in deep snow. My skiing career ended abruptly on a nice smooth, groomed hill at Craigleith Ski Club in Collingwood. I stopped on a small rise to wait for my wife and some friends to catch up, started off with a skating stride, caught a tip and ripped the medial collateral ligament in my right knee. My last run down the hill was in a ski patrollers toboggan. No more skiing for me and in retrospect, I think this injury was caused by the increasing loss of muscle in the quads.
Sailing had similar issues as well. Stepping over the cockpit combing from the deck to the seat was a long step that surprised me a few times and left me laying on the cockpit floor. Every time it was a knee that let me down.
It was 10 years and many falls before I was diagnosed with Inclusion Body Myositis. My response to the weakness, the falling and the muscle shrinkage was to join a health club and hire a trainer and get back in shape. This was probably what we all would do but hard workouts are not in your best interest with IBM.
I was amazed to learn that we have so many muscle cells in our bodies that we can loose 60% to 70% before we notice the loss.
Friday, May 24, 2019
Introduction to my journey with IBM
Thanks for joining me as I document my personal journey with Inclusion Body Myositis (IBM). My intent is to detail my personal experiences with IBM in hopes of creating an informative record for both fellow IBMers and the medical field. Please interact with me and hopefully we can develop a reference base for all interested parties.
When I was first diagnosed in 2001 there was not much known about IBM and most doctors had to look it up. I am luckier than a lot of people dealing with this disease in that I live in Toronto, Ontario, Canada where there are a lot of excellent medical facilities and knowledgeable resources available.
My name is Paul Bond, born 1950 and diagnosed with IBM in 2001 after several years of unexplained trips and falls. I was working as a sales and service representative in the railroad maintenance business and continued to work until 2014 when I started working from home on a contract basis. My wife and I were sailors and skiers and enjoyed touring on our motorcycle until I was no longer able to participate in these pastimes safely.
Its been a rough ride and much has changed but I still strive every day to have the best life possible.
I was recently reminded of the Serenity Prayer written by American theologian Reinhold Niebuhr (1892-1971) which is very appropriate in these circumstances.
God, grant me the serenity to accept the things I cannot change
Courage to change the things I can,
And the wisdom to know the difference.
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