When I lived in BC and was diagnosed with diabetes in 2004 everything I needed was covered by my medical plan. Not so in Ontariario. You have to fight for every dollar. The best example of idiotic care here is that they pay for insulin but not the needles to take it. Are we supposed to drink it? Needles are $40 a box, and, if like me you use six a day, that box doesn’t last very long.
As a diabetic the two most critical things for me are my vision and my feet. Complications of diabetes often lead to blindness and foot amputations, so it’s critical that the health of your eyes and feet are constantly monitored. My diabetic specialist recommended that I go for thorough testing on my eyes, so I booked an appointment with my ophthalmologist. After the testing which showed some areas to monitor, I was presented with a surprise bill for $127! Despite the fact that this testing is critical to my health OHIP doesn’t pay for it. I filed an appeal and after a YEAR of back and forth correspondence and a gazillion forms, all sent courier from OHIP at great expense, and a phone hearing, they denied my appeal, despite agreeing to my point.
Foot care is really critical because you can easily lose the sensations in your foot. So bad that you could step on a nail and not even feel it. Dry, cracked feet can lead to severe wounds that don’t heal, so you have to check your feet every day. In my case I suffer from severe diabetic neuropathy, which is pain and burning of the feet, so bad that it’s painful to walk and you can’t sleep because of the pain. None of the various medications my doctors have tried have worked. I need the services of a chiropodist, proper shoes for a diabetic, socks for diabetes and orthotics. There’s also a new topical cream on the market which basically overloads the nerves and mitigates the pain. You would think I would obviously get a referral and these things I need would be covered either by OHIP or ODSP (Ontario Disability Support Program) which I’m on. Nope! Nothing. Zippo. Nada. You’re on your own.
The best example of healthcare in Ontario is the sign on my doctor’s wall to “Limit Your Complaints to One”. God, I remember when the doctor would come to your home when you were too sick to go out. How things have changed. Now it’s all about the money. Doctors here don’t care if you live or die. And the hospitals aren’t any better. I was rushed to emergency when I had laid on my couch for five days, so sick I could barely move. It was coming out of everywhere. I couldn’t keep any of my critical medications down, which really scared me. In tougher times I had gone without my meds for six weeks and I ended up in hospital with sugar levels off the charts. When I arrived in emergency they stuck me in a chair because no beds or gurneys were available. I sat there almost falling out of the chair right in front of the staff and I couldn’t even get a cracker or some water for FIVE hours. No surprise that my sugar levels were off the charts again and I was severely dehydrated. They put me on an IV and I finally managed to fall asleep, only to wakened every fifteen minutes to “check my vitals”. They just booted me out after my sugars had stabilized when they should have kept me overnight for observation. After all that I get a bill in the mail for the ambulance! This is healthcare?
After a few years in this horrible place my health was deteriorating rapidly. It took me THREE YEARS to finally find a family doctor (yeah, the one with the “one complaint” sign). I’ve been bounced all over the place with various misdiagnoses from everyone. At one point in response to a diagnosis that I had “frozen shoulder” they sent me to physio three times a week. It was so painful and brought me to tears but I stuck it out for six months. After seeing a specialist to get an MRI when I was no better, he said the physio was the worst thing I could have done for my shoulder. I remember him saying, “God, that must have been SO painful!” Boy, was he right. This OHIP paid for, but not for what I need.
In total frustration I sent this open letter to everyone involved in my care. So far, little response. No surprise. Not in this province.
AN OPEN LETTER TO MY CAREGIVER TEAM
Dr. Ramona Coelho
769 Southdale Road, Unit 9A
Drs. Harris, Bakeer, Reichert
St Joseph’s Family Medical Centre
346 Platt’s Lane,
Dr. Simon McBride
1101 Jalna Blvd. Unit 2
355 Wellington St. Unit 233
South London Urgent Care Clinic
595 Bradley Ave,
Doctor Athanassios Tony Apostol
111 Waterloo Street
Dr. Geoffrey R Dilworth
355 Wellington St. Unit 233
|Family Doctor, BC:
Dr Eric Steven Gustavsson
406-2330 97 Hwy,
Dr. Philip Andrew
140 Oxford Street East, Suite 202
This is a desperate call for help. Recently my life has degenerated into lying on the couch most of the day, on the verge of tears, deeply depressed at how futile my life has become. The excruciating pain twenty-four/seven in my feet is more than I can bear. Sleep has become almost impossible because of the pain.
I take full responsibility for not fully disclosing my full history or maybe consulting with the wrong person on various issues. I’ve gone through three years of trying to find a family doctor in London and during that time Dr. McBride at the walk-in clinic was very clear that he did not want to be my family doctor. Although I went through exhaustive questioning by a diabetic specialist at St. Josephs, much of my history was not discussed. As with all doctors in London, patient issues are limited and no one has the time to delve into a full history to determine the right diagnosis. My care has been a shotgun approach to individual issues as they arise, but no one has taken the time to review my overall health, considering both my full history and my current conditions. With all due respect I am just asking that I get the proper help here before something drastic happens, like losing my feet.
For most of my adult life I have usually gone to bed around midnight; fallen asleep quickly and woke early, refreshed. I have never been able to sleep in or nap during the day. Now I am sleeping on and off all day and all night in two and three hour increments at best. My sleep patterns are all over the place and if you believe sleep is a “bank”, as I do, my sleep makes no sense. I will wake at four or five in the morning; work on my computer for a few hours until my eyes grow tired and I will sleep from maybe 10:00 until 1:00. I’ll have lunch and do some more work and again become tired around 3:00. I can often sleep until 8:00 or 9:00 o’clock, so I will set my alarm to wake earlier. I will go to bed around 1:00 and again sleep until four or five o’clock. On other days I will not nap at all, yet I will still only sleep two or three hours at night. Also, regardless of when I wake up I have trouble with my vision. I find myself zooming in ever larger on my computer to be able to read anything. It takes about half an hour for my vision to normalize.
This got me to thinking and questioning why my health has deteriorated so drastically in a relatively short period of time. In late 2010 I was working at Home Depot, on my feet all day and, yes, my feet were tired by the end of my shift, but nowhere close to the pain I am now experiencing. I hiked. I road my bike all over town. In the summer I had roller-bladed all of the trails in London and I had ice skated in the fall. After my contract ended at Home Depot I had no money. I applied to Ontario Works for help with my meds, primarily my insulin, but I could not get any help. I went six weeks without my meds and ended up in a virtual coma lying in my apartment for days that I hardly remember. My sugar levels were above thirty. I finally got to Dr. McBride who questioned whether to put me on massive doses of insulin or send me to the hospital. He was kind enough to reach into his own pocket and together with a local pharmacist, got me on my insulin and my sugars improved.
Quite honestly I don’t remember exactly when I began to have trouble with my feet. In late 2011 I began working at a call centre, which didn’t involve a great deal of walking or standing, although I began to find it difficult to do the long walk from my car to my desk. I started to feel a burning sensation in my feet. For many years I had been using inserts called Heel That Pain, which had worked very well. Back in 2007 I had taken on a massive renovation project and I was on my feet fourteen to sixteen hours a day, seven days a week. By the end of the day I could hardly walk, but there was no burning sensation like now. My feet were simply painful and my doctor suggested it was a flare-up of the planter fasciitis I had after my dirt bike accident a few years earlier. Within a week after getting them, the inserts eliminated my pain.
Also, in late 2007, after my renovation project had fallen apart because of bad press and I had lost my guaranteed financing, my stress levels were off the charts. For some unknown reason I could not get warm and often sat shivering wrapped in a sleeping bag. My buddy from Alberta, who happened to be a medic, came for a visit and as soon as he saw me he rushed me to Dr. Gustavsson. He said my pupils were huge and I was slurring my words. Dr. Gustavsson questioned whether to send me to the hospital or prescribe insulin for the first time, which is what he ended up doing. My sugars were above thirty but moderated after I started on the insulin. He told me I was a “poster child” for a heart attack because of all the stress I was under and he told me to find a way to get out from under the stress, no matter what it took. That’s when I moved to Panama.
Much of my time in Panama was spent renovating a three apartment house. My meds were basically my insulin and Metformin. My days were long and physical but I didn’t check my sugars other than at the doctor’s office. The only incident in Panama was I had a gall bladder attack and was not found for two days before being rushed to the hospital, where I was subjected to surgery tactics that were at least twenty years old according to doctors I saw when I returned to Canada. The tenant I left in charge of my place in Westbank didn’t clean the snow off the roof as I had asked and the roof collapsed, resulting in a twenty thousand dollar repair I could not afford. I lost everything in the fire sale of the place, including non payment of a five thousand dollar mortgage I took back. In Panama, not only did I not get paid for thousands of dollars I had spent in materials doing the renovation, plus not getting paid for my labour as agreed before I started, but I also got ripped off for everything I owned when the police were called to get rid of tenants I had offered an apartment to so they wouldn’t end up on the streets. When they moved out they stole everything I owned, right down to the batteries out of the remote controls. To say my stress levels stayed off the charts would be an understatement. I had twenty-one dollars in my bank account, so I sold off what little I had left and returned to Canada.
Over the years since getting them, my Heel That Pain inserts had broken down a little and I felt they may not be working as well. I contacted ODSP about getting proper orthotics and they put me in touch with OW, who issued a certificate for $350 to get orthotics. I went to Medpoint and was somewhat surprised that all they had me do was walk across a pad on the floor and said that was all that was required. I do not remember any discussion with them about being a diabetic or what had been diagnosed by then – diabetic neuropathy, for which I also had a host of new medications as a result of the pain.
A couple of weeks later I picked up my new orthotics and began wearing them, although this proved expensive because they didn’t fit in any of my shoes or boots, so I had to buy all new footwear. I was expecting them to relieve the pain I had been suffering, but they were, in fact, more painful. Not only was I dealing with the burning, but I also started to get shooting pains in my toes and up my ankle. My toes often felt numb and painful and it became even more painful to walk any distance. On occasion I would feel like my foot would give out and I would fall. I also often felt I would lose my balance.
It so happened that I was invited to a dance with a new singles group that I wanted to join. I thought there was no way I could dance, but I went anyway. I took my very expensive dance shoes from my years of taking lessons and used the Heel That Pain inserts. Of course I ended up dancing all night and assumed I would not be able to walk the next day; however, I had no pain and no trouble the next day, which I found very surprising. I started to think back on when I got my orthotics and that they had not asked me any questions about my diabetes or foot pain, so I stopped wearing them and went back to the Heel That Pain inserts. No more excruciating toe pain or shooting pains up my ankle. I still have the burning which I am assuming is from my diabetic neuropathy, but I’m not even sure about that now.
Obviously I am terrified about losing my feet, so I spend a lot of time researching on the internet. I came across a book called 21 Things You Need to Know About Your Feet, recommended by a friend on one of the diabetes forums. The book proved fascinating and I learned a lot about my feet. One thing that struck me was the chapter on TTS (Tarsal Tunnel Syndrome). It made specific reference to things I had experienced in my life.
Years ago I slipped on a patch of ice getting out of a car. I was misdiagnosed at the hospital and they put me in a cast, which was very painful. When I saw my family doctor he sent me for x-rays then immediately removed the cast because he said I had a bone spur in my right foot. The information on TTS specifically mentions a bone spur. A number of years ago I had a dirt bike accident which basically tore up the muscles in my left foot. I had to stay off of it for a year and, at the time, the doctor warned the muscles would shrink as they healed and might cause me trouble “later in life”. He may have been right.
Another major issue is my weight gain. When I returned to Canada I was a reasonably healthy 175 pounds. Although I ate well, thanks to my cousin, I was also very active. I hiked, road my bike miles and roller-bladed and felt in good health. In January, 2011, when I moved to my current apartment in London Housing, I decided to quit smoking. This was also a time when my insulin dosages, both Lantus and NovaRapid were being increased substantially in an effort to improve my blood sugars. In no time at all, thanks to my renewed sense of taste and smell, I was basically eating from morning to night. Everything tasted so good. Before I knew it I had ballooned to over two hundred pounds, a very uncomfortable weight for me. Even though I started smoking again and reduced my food intake drastically, my weight has stayed above two hundred pounds, which some people have suggested is a side effect of all the insulin I am taking.
A contributing factor is my total lack of exercise. I’ve gone from a person who was constantly active, roller-blading and hiking, skiing and playing racquetball for hours, basically doing anything active, to being totally sedentary, sitting on the couch watching TV because of my feet. This is a total lifestyle change for me and not one I’m dealing with well. If I can’t get rid of the pain in my feet there is no form of exercise I can do. Maybe something like gastric bypass surgery should be considered?
I have also never been a fan of taking a number of medications, because most of them have side effects which can often be worse than what they are designed to cure. Since being diagnosed as diabetic my medications have basically been Metformin and, on and off, insulin. Now I am on a host of medications, with many of the associated side effects. I am particularly concerned about the Oxycocet because it is a powerful and addictive narcotic. Dr. Bakeer, with some hesitation, prescribed this when the pain in my feet was more than I could bear; however, this was primarily because of the orthotics, so maybe now I don’t need to be on this medication? My research also does not show a single instance where this medication is recommended for diabetic neuropathy, plus the side effects – dry mouth, anxiety, ED, itching, and sleep problems are more troublesome than it’s worth.
When I was a child I had very bad eczema. My poor parents spent a fortune on medications over the years, until a chiropractor discovered a bone out of place in my neck that was pressing on a nerve. After treatment to return the bone to its correct position I was cured. At one point my parents had to put my hands in bags and tie me to the bedposts so that I would not scratch myself raw. The point was I learned to deal with extreme itching without scratching.
I don’t know what medication is the culprit, but I suddenly have the worst itching ever, mainly in my fingers, but also in other areas, like my legs. On occasion the itching has been so bad in my fingers that I have scratched them to the point of bleeding. I’ve tried vigorously washing them; applying various creams, but nothing works. It comes on without warning.
Another side effect is sweating. Again without warning I can’t strip off my clothes fast enough. I am sweating like the proverbial pig. If I have fallen asleep, as often happens given my horrible sleep patterns, I wake up soaked right through my clothes.
Two things that may or may not relate to my medications are being extremely dehydrated at times, particularly waking with an extremely dry mouth. I do drink water frequently and this helps. Any exertion will result in a totally dry mouth. It helps if I chew gum. Secondly I have a whole new level of flatulence, something I have never had an issue with. All day I am either burping, which leaves a fruity taste in my mouth, or passing gas, long and loud. This can be extremely embarrassing.
I also have several small wounds on my lower legs that have not healed in well over six months. When my mother had a similar injury that was not healing it turned out to be fifth stage melanoma, so I am obviously concerned about this. After Dr. Dilworth burned off two questionable marks, one on my torso and one on my head, he said to watch other marks carefully; however, I live alone and cannot properly view marks on my back. I do have some new ones that I am concerned about.
It may be yet another reaction to the drugs but I am developing pimples between my testicles and my thigh. As a result of my eczema as a child, even after I was cured I was left with incredibly dry skin. In the winter I had to use expensive moisturizing creams all over my body or I would be all dry and scaly. With some of these creams by the end of the day my face would look very greasy. Strangely enough, given all the information about the harming effects of the sun, in the summer, once I got a tan, I did not need any cream. Now my ankles are covered in small hard pimple-like growths that are often itchy. No cream seems to make them go away.
Another consequence of either my diabetes or the medications is ED. Prior to being on all these meds I never really had any issues. No, I was not twenty-one, but I was able to get an erection, which was often involuntary, like waking up in the morning, which is not unusual. Now there is absolutely nothing. I probably haven’t had an erection in six months. Thankfully I am not currently in any relationship or this would be a real problem.
During the time I worked at Home Depot I was alone on a late shift and could not find any help to pull down a very heavy shower stall from the upper racks. It was an extremely difficult task and at one point I felt pain in my left shoulder. This lasted for several weeks and I finally went to my clinic doctor who assessed it as “frozen shoulder”, a common issue with diabetics. He put me on APO-TRAMADOL and recommended physical therapy. I started going to London Physiotherapy three times a week; however, these sessions were extremely painful and brought me to tears. After six months of going my shoulder was no better and was, in fact, worse.
I went to see Dr. Apostol who told me to cease the therapy immediately, acknowledging that it must have been extremely painful and that it did more harm than good. He setup an MRI appointment for me, for several months later. In the meantime I also went for an ultrasound which turned up nothing. The MRI was also inconclusive because the image was not very good. Dr. Apostol told me to continue the medication if it made the pain any less and to continue to exercise to keep the joint limber. I am not currently taking the medication and continue to have pain in my left shoulder. I cannot do things like put my coat on, right arm first as I have done my entire life. My range of motion in my left arm, for example, putting it behind my back, is limited.
I believe there are several things that can be done for my feet, first and foremost to get a proper diagnosis as to what exactly is the problem. Maybe surgery is in order. Regardless, I do believe I should be wearing diabetic socks and have proper diabetic shoes, both of which require a prescription to be covered by ODSP. Dr. Coelho has recommended x-rays which I am going for soon. I also feel that I need the services of a well qualified podiatrist. I believe a podiatrist should consult with Medpoint to determine what the problem is with my orthotics. If consideration was not given to my diabetic neuropathy then replacement orthotics are in order. I have suffered months of additional pain unnecessarily and this should be rectified.
My medications currently cost over seven hundred dollars a month. Thankfully, this is covered by my drug benefits under ODSP; however, it is my goal to return to BC. Their drug coverage does not take effect until the third month of residency, making a move virtually impossible because I cannot afford twenty-one hundred dollars to maintain my current medications. The BC Health Ministry told me to maintain my coverage in Ontario until I have met the BC residency requirements; however, my ODSP coverage requires that I reside in Ontario. It has been suggested that if I find employment back in BC then I tell ODSP I am only going to BC on a quest to find employment and will be returning to Ontario. This plan sounds fraught with danger if something goes wrong. With what appears to be numerous side effects from my current medications and the associated costs, a review of my medications to confirm what exactly I should be taking is in order. I have read about numerous herbal remedies for diabetes which, together with changes in diet can work to regulate my sugars.
Last January I went for testing with my cardiologist and everything was fine. My blood work has continually improved and Dr. Cuelho had no concerns after reviewing my most recent blood work. I believe my A1C target was 7% and is currently at 8%. My stool tests were all clear.
As I lay on my couch all day, flirting in and out of sleep, waking soaking wet from sweating, on the verge of tears believing that I can’t take this anymore, I ask myself how ever did my health deteriorate so quickly? I’ve gone from an active, healthy person, full of energy, never feeling that I had any limitations on what I could do, to someone in pain all the time, unable to perform even the simplest task without pain. I have been through some very difficult times in my life and any doctor I have seen has always marveled at how my blood pressure is normal. My attitude has always been positive and even lying in the filth of a shelter I believed things would get better and on many levels it has. Despite being homeless with little possibility of finding a decent job I was never as depressed as I am now.
I do not have an appointment at St. Joseph’s until April 15th. Maybe there could be some consultation between Dr. Bakeer and Dr. Coelho before that, if that is in order? I am obviously open to any suggestions here and I thank you for your time.