Canadian Neuropathy Association

Diabetic Neuropathy - The Journey Into Darkness

Diabetic Neuropathy - The Journey Into Darkness

Not all that long ago I was a reasonably healthy, happy, incredibly active man. I lived in the beautiful Okanagan valley in BC, Canada and took every advantage of my wonderful four season surroundings. In the winter I played racquetball three times a week, snowmobiled, downhill and cross-country skied, skated, and even ran a four season hiking club with weekly hikes in the mountains. In the summer I white-water rafted, roller-bladed, cycled, dirt-biked, water skied, swam, hiked and even para-glided. My favorite all year activity was country dancing I took lessons for ten years and usually went dancing at least three nights a week depending on the season and the weather.

That all changed when life dealt me a blow. After a series of unfortunate events, not the least of which was being ripped off for everything I owned by a Panamanian family I had given shelter to, I returned to Canada with barely a penny to my name. Thanks to the generosity of my cousin, who gave me a place to stay and fed me for six months in Toronto, I began to put my life back together. My bad luck continued when I met a girl from London, Ontario on the internet and ended up moving to London to be with her. Another huge mistake.

After I caught her cheating on me with another guy she met on the internet, no surprise there, my life took even more downward turns. I ended up living in my car, sleeping on the floor of an office owned by a colleague. I could not get help anywhere and I ended up going without my all important medications for six weeks, and ended up in hospital. Thanks to the good graces of my clinic doctor, Dr. Simon McBride, who reached into his own pocket to pay for my medications, I didn't die, but I did not realize at the time exactly how much damage I had done going without my meds. I began to experience excruciating pain in my feet. I couldn't sleep. I could barely walk because of the pain. I was diagnosed with diabetic neuropathy and began a series of medications, none of which mitigated the pain.

At one point, after being provided with ill-fitting and completely wrong orthotics, which I dd not know at the time were causing even more pain, my doctor put me on a generic form of Oxycontin, most unfortunately not warning me of the adverse side effects. Soon I found myself lying on my couch on the verge of tears, utterly depressed and questioning the quality of my life. My seventh floor balcony began to look very inviting because I could not deal with the pain any longer. In desperation I wrote a lengthy letter to all of my care givers, pleading with them for help. Not one of them responded. My family doctor, the one with the sign in her office reading "please limit your complaints to one", called to "discuss" my letter. It became obvious that she had not even read my letter and did not intend to deal with any of my symptoms.

I began to research my medications and discovered that one of the side effects of Oxycontin was "suicidal thoughts". No kidding! It was also responsible for me waking up soaked in sweat, my ED and a host of other symptoms. I immediately stopped taking it and my life returned to normal. I stopped wearing the horrible orthotics and the increased pain stopped.

Today I am still in horrible pain twenty-four hours a day. I walk only with the aid of a cane. I feel more and more hopeless about my future. Thanks to the heavy doses of insulin I'm taking and the complete lack of exercise because everything is too painful, I have put on over thirty-five pounds and I'm not dealing with the weight gain well. It's an effort just to get up off the couch. My normally excellent sleep is now sporadic because of the pain. I wake in the morning in tear inducing pain, wondering how I will ever get through another day. Although I am on disability, ODSP in Ontario, they won't pay for even my important foot care which I have no other choice than to have regularly to protect the health of my feet, or the services of a neurologist, which I feel is critical to my proper diagnosis and treatment. I did contact a neurologist here in London and was told it may take a year to get an appointment after a referral from my doctor. A year! What quality of health care is this?

I do not know what the future holds for me. ODSP does not pay enough to live on, plus they deduct my meager pension dollar for dollar. At sixty-three years old and disabled, my chances for any type of job with my physical limitations are bleak. I have applied for all kinds of low paying call centre jobs that I could handle, but I know I am being discriminated because of my age, although no one will admit that to me. The government is useless. I have applied for every retraining program there is, but the government refuses to help me. It's unconscionable that in a rich country like Canada we can't afford to help those in need. .

1 Reply

I agree with you 110%, I've been going through this stuff for years. But mine was the medical society in general. I'll try to make it short.

I suffered for 24 yrs with migraines and on all types of medications and powerful pain killers. After my family doctor indicated that my blood work showed something wrong with my liver and we'd start looking into it next week. Unfortunately he committed suicide and I paid for a copy of all my doctor reports for a future doctor. I was trying everything including an acupuncturist which after 3 mths said that it wasn't working. One night I was watching the Kitchener news and found an amazing acupuncturist who got rid of my migraines for a big price. I was just fortunate that at the time I found the money and 1 week after getting rid of my migraines I was let go at my job of 13 years due to poor attendance, which from a business perspective I knew it was gonna happen but I had no family doctor to go to in order to receive long term disability at work until I got a new family doctor. At this time there was a shortage of family doctors in the area and I was using the walk in clinic to repeat my medications for 5 years.

Eventually a new doctor came into town and was so excited, on my 1st visit I had brought in my medical reports I had paid for to him to review. He put it into my folder in his office and said that he wouldn't go through them as all doctors keep different notes. Hence he didn't notice my liver levels and I don't know why he didn't test that one.

Then when I moved to Brantford I went to another new doctor (which was 7 years ago) and she has tried to treat my RLS and sleep disorder. She did not like the medication that the sleep doctor had recommended. So she kept changing things because of side effects. Also she kept telling me to lose some weight and exercise. I felt that my diet was good and not fast foods. Exercise was getting harder because of my tiredness which is extreme.

So about a month ago I asked her if she could sign the papers for benefits and she refused and said that she i cdidn't tell me to quit. I like you would send out hundreds of resumes and IF I got an interview I figured it was an age thing.

Because I've been diagnosed near 2 yrs ago with Non Alcoholic Cirrosis of the liver Stage 4. So my liver, spleen and pancresis are all involved. Because my pancresis isn't generating insulin I am also diabetic. And she wonders why I can't work. Well now were getting ready to sell my dream home as I've used up alot of my savings for retirement.

How can so many things get missed?

So now I'm working with sleep who is also a neurologist the pills I was taking were going through the liver and we need to change so that the meds go through the kidney. I wish someone would have told me about going through this change as I would have liked to know what was going to happen. The pain in my body is unbearable and no sleep. I just want to feel better after so many years of being not well.

Sorry for venting but I do understand your frustrations.


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