From: Montreal, Quebec, CANADA
Since last post: 40 days
Last activity: 31 days
|AIM: || ||#1 Posted on 20.5.06 1741.51 | Instant Rating: 7.20|
|My Diabetes Story|
Oops… Guess I spoiled that punch line.
A Tale of Blood and Piss and Shit
This is a tale of blood and piss and shit. I offer it, not in the hopes of some upswell of public sympathy, (not that I am in a position to turn down any positive feedback of any kind whether in the form of prayers or any other well wishes) but rather because writing helps exorcise my demons. So, like most of my writing, this is in the end profoundly selfish though I hope not too self-indulgent.
It is also a tale of what happens when you are forced to confront your own mortality as your body betrays you. In telling this, I know that I am far from unique, but nothing is quite so fascinating as the rack and ruin of one’s own corpus delecti.
I am going to talk a lot about my weight in this and I must confess right from the start that these weights are approximate mostly to the point of fiction. I have never (until very recently) spent a great deal of time obsessing with my weight or weighing myself. In fact, for large parts of my childhood, I don’t remember my family ever even owning a scale. I have always been more concerned about my waistline, for the entirely practical reason that an increase or decrease there would affect my wardrobe.
There is a picture floating around the Internet somewhere taken at the home of fellow wrestling fan Darryl Brewer aka BrewGuy. It is the day before WrestleMania X8 in Toronto and I am sitting on a couch slightly blitzed with a beer in my hand watching a match featuring TAKA Michinoku and for some odd reason Kurrgan, the Acadian Giant. At the time, I was working for Value Village as a Management Trainee and being run off my feet a lot, so I was down to a 36 inch waist from my usual 38 and probably down around 160 pounds. In my best shape in years in fact. I was still, as the picture would make clear, overweight. But my weight was always a factor of eating a lot of good food and as BrewGuy would attest, the one advantage that I always had was that even if I was overweight, I had incredible stamina, with the capacity of walking the average person into the ground.
Shortly after that picture was taken, I ended up leaving Value Village for Bell Canada where I work to this day. The Bell Canada job was a blessing in many ways – union job, controlled hours, great medical benefits, good pay. Since I was accustomed in my retail jobs to working sixty or more hours a week, working forty hours left me with plenty of free time which I was able to devote to my other new position as the Internet Wrestling Syndicate’s in house writer. (Now the International Wrestling Syndicate.)
By its very nature however, the Bell Canada job left me sitting for much of the day and as time went on this had an expansive impact on both my waistline and my weight… climaxing in April of 2004 when the IWS presented a show at the Plaza. I was mourning the fact that I was probably going to have to invest in some 40 inch pants before too long when Mark the Grizzly, a Quebec wrestling legend, but no cruiserweight, cracked that I was beginning to develop a front butt like his.
This crack had a galvanizing effect on me. When someone the size of Mark the Grizzly begins making fun of your weight, it is clear that something needs to be done. I made an almost immediate resolution to bike to work at least three times a week. Since my work at the Jean-Talon metro is a good forty-minute bike ride mostly uphill from my apartment in Place Saint-Henri, this was a considerable commitment. I also decided to sharply reduce salty snacks, fried foods and sodas from my diet.
Once my legs stopped protesting, this had an almost immediate impact on my health and I gradually started losing weight and feeling healthier. As 2004 progressed however, a few odd things began to happen.
First of all, I became increasingly thirsty especially for milk and fruit juices, which also led to an increase in urination. My weight loss continued gradually even when I put my bike away for the winter. As 2004 continued into 2005, the thirst and urination became increasingly severe leading to a nightmare drive that I took to Philadelphia with the IWS owner PCP Crazy F’N Manny in June of 2005.
In addition, a found myself becoming dizzy from time to time and waking up in the middle of the night with strange cramps in my legs. Also during this period, I found that for the first time in my life, I needed to get glasses for my sight.
Taken one at a time, these symptoms didn’t really alarm me except perhaps for the dizziness. I have always had issues with cramps in my legs dating back to my days playing nets in Street Hockey and I assumed that the cramps were related to my biking or to simply falling asleep in an awkward position on the bed. And virtually my entire family wears glasses, so I assumed that my genetics had just caught up with me.
By December of 2005, I was down to a 32-inch waist and about 140 pounds. My mother, my sister Caitlin and my boss Manny were all increasingly concerned and urging me to see a doctor. The wrestlers of the IWS had been joking for months that Kevin Steen was somehow leeching off all my weight as he seemed to gain the weight that I was losing. Since the wrestlers usually only saw me once a month, there were in a unique position to observe the changes in my appearance and they all seemed convinced that I was ill.
During December, I began the search for a doctor, visiting a number of clinics, but not generally being satisfied with the responses that I was getting and frequently finding out that except in the event of an emergency, most clinics in Montreal won’t even take on new patients.
In the end, I found my doctor not a block away from my apartment at the Place St-Henri clinic where I found Dr. Pinter.
Enter Dr. Pinter
Dr. Pinter is a relic to an older generation of doctors. He looks like he was not paying attention crossing the street during the Ice Age and got run over by a run away glacier that took a chunk out of him.
His favourite diagnostic tool, I came to find, is the shotgun. He is one of those doctors on ER who rattles off about a hundred different kinds of tests to be performed, just in case.
When I came in to speak to him about my concerns, he immediately seized on the weight loss and ignored all my other symptoms. It should be said that while I have a great deal of respect for Dr. Pinter, we have had our miscommunications along the way. Case in point: sending me to the Queen Elizabeth Centre for a chest x-ray and arriving there to find out that Dr. Pinter had also decided that I needed to be scheduled for a Upper G.I. and a barium enema. In a barium enema, they basically shoot mildly radioactive goop up your butt and then take pictures of the results. In an upper GI, you drink down barium which tastes like a chalk milkshake and then you act like a fashion model as the X-ray doctor takes pictures of you from every conceivable angle while you lie on a bed that can basically rotate in 360 degrees.
(I had the Upper G.I., which demonstrated nothing more than that I had very slow digestion. The barium enema ended up getting cancelled because despite going on a liquid diet for 48 hours and taking massive amounts of prescribed laxatives, I still had fecal matter in my colon when I came in for the test… because of the aforementioned slow digestion. The test ended up never getting rescheduled because by the time that I flamed out of that test, we had a diagnosis for my condition.)
Another classic example of miscommunication between Dr. Pinter and myself was related to the blood tests that I had to take at the Verdun General. I assumed that I would go in and have my blood taken and then leave… but no. One of the tests that Dr. Pinter wanted me to take involved me having my blood taken and then eating a “scientific breakfast” – two slices of toast, package of jam, foil wrapped glass of juice, tea or coffee with two milks and one sugar. You buy this breakfast from the hospital cafeteria, eat it within a half-hour and then return to have your blood taken again two hours after you began the meal.
This as it turns out is a test for diabetes. The idea is to see how your body reacts to a set amount of sugar. It should be said that most doctors from outside of Quebec consider the Verdun Hospital way of conducting this test to be astonishingly civilized. In other areas the test normally involves drinking a glass of glucose straight and then waiting two hours. Of course, the Verdun method also makes money for the hospital cafeteria.
Not that this will come as a great shock to anyone given the title, but I was diagnosed as having Diabetes Type B - also commonly known as adult-onset diabetes or non-insulin dependent diabetes. Normally diabetes causes you to gain and not lose weight, but my experience is not completely unheard of. In fact, the whole panoply of my symptoms including some things that I hadn’t even considered being a symptom ended up being related to my diabetes.
(As an example, every once in a while for no particular reason my fingers would tingle. One of the best descriptions of my kinds of diabetes that I have read describes how the excess sugar in the blood cause the blood to become thick and syrupy making it difficult for the blood to get through to the extremities causing the tingling. Diabetics have to be very concerned about the circulation of the blood to their legs, feet, hands, and as it turns out eyes. The excess thirst and urination is caused by the body demanding liquid to dilute the blood to thin out the sugar. And so on.)
Almost immediately, I ended up with a small kit to test my blood on a regular basis, which in Quebec is provided free by your pharmacist, who then makes boatloads of profit off the testing strips and small needles that you put in the “gun” that you use to prick your finger. I always test my blood first thing in the morning and then usually test a second time two hours after a meal, adding a third test only if I am concerned about my levels.
Dr. Pinter placed me on metformine almost immediately, upping my dosage and adding glyburide and avandia to the mix as time went by. At the moment, I take 1000 mg of metformine, 10 mg of glyburide and 4 mg of avandia at breakfast; 500 mg of metformine at lunch; and 1000 mg of metformine with 10 mg of glyburide at supper.
My problem has always been that my sugar level is too high. The human average is 5 to 7 after fasting (first thing in the morning) and between 7 and 9 two hours after a meal. When I was first diagnosed, in late January, my levels were in the high twenties. Over the months, my levels have gradually decreased until I now post levels between 10 and 15. Still too high, but nowhere near as severe as it had been.
In addition to the medication, I have further adjusted my diet eliminating all sugar-based sodas, restricting myself to Perrier and Club Soda. I have completely eliminated salty and sugar based snacks from my diet and have added even more salad to my diet. I am also supposed to be eating more fish and more legumes, but frankly this is something that I am struggling with.
One of the first positive results of the medication was that my level of thirst and urination decreased dramatically. The best result of this being that I could suddenly actually sit through a movie in a theatre without leaving two or three times during the film to piss.
The Cure is Worse Than the Disease
Unfortunately, the medication that I am taking (and the fact that my levels are still too high) does have some adverse affects. I am massively constipated all the damn time. Usually about once a week I break down and chug some Milk of Magnesia and with twenty-fours hours the floodgates open and then I am right back to being blocked like a giant hydroelectric dam.
My legs have gone from occasional cramping to a constant dull ache that ascends into a throbbing fiery mass of pain on bad days. I take ibuprofen for the pain, but I try to limit my dosage as much as possible. My non-medicinal strategies involve long walks, long hot baths and heat packs.
The combination of the constipation and my legs leads to a nasty cycle of insomnia. Perhaps insomnia is not the right word. The problem is not falling asleep, but staying asleep. I typically wake up every hour to two hours and have to walk around my apartment until my legs calm down enough for me drop off again.
I also have vastly reduced energy, linked no doubt to my chronic lack of sleep. Usually, when I get off work from Bell, where before I would try to get in a couple of hours of writing, now I find myself looking forward to a long nap.
Perhaps the most pernicious side effect is the way that the condition has affected my morale. I am the only, the only, unique member of my family to have diabetes. No other cause being obvious, it becomes tempting to place the blame for the diabetes to a life-long addiction to Coca-Cola and junk food. The blame game only worsens when you consider that what I had become most proud of – my weight loss – appears not to be the result of a change in diet or exercise, but the result of a lifestyle induced disease. The temptation to beat myself up and become depressed is almost overwhelming.
Suddenly, I Have a Bony Ass
The worst thing is that my weight loss has continued. Worse still is that over the last month or so, I have had to deal with a sharply reduced appetite. Meals that would have sent me back for seconds in the past, I find myself finishing with some difficulty.
My waist size is reduced to a 30-inch waist, meaning that I have lost ten inches or a full quarter of my waist in two years. (I may actually be under a 30-inch waist, honestly, I’m afraid to check.) My weight is down to 115 pounds, making me lighter than Twiggy, which is frankly, a revolting development. Suddenly, I have a bony ass. Sitting on buses and metros or any other plastic seat has become acutely uncomfortable. I have been wearing a beard for a while not just because I lack the energy to shave in the morning, not just because I am a hairy mess who can grow a five-o’clock shadow by eleven, but ultimately because without the beard, I look emaciated.
My feeling is that my lack of energy is also related to the fact that during the course of my disease, both diagnosed and undiagnosed, my body was cannibalizing my weight to provide me with the energy that I needed to keep going. But that gas tank is sharply tilting towards empty.
One small consolation on this matter is that I work for Bell. They have a program where you can take a medical leave and be compensated at 100% of your salary for a few months, then be compensated at 80% of your salary for a few more months and then drop to 60% of your salary for the balance of two years. OR… you can work half of your schedule but still get paid for full-time work and you can do that, for the most part, indefinitely. So, beginning next week, I will work two full days and one half day a week.
The extra time off will give me time, I hope, to do more walking and exercising to build back some energy and muscle tone and also allow me to spend more time visiting my parents in Morin-Heights in the Laurentians where my Mother has a mission to fatten me up.
I should say that my Mother has been both a blessing and a curse during this whole ordeal. On the one hand, things which I meekly accept drive her into a fury and I sometimes find myself defending my doctors despite the snail’s pace of the treatment. On the other hand, there is no doubt that she is in my corner and her concern for my health helps a lot to ease the daily annoyances of my condition.
In fact, throughout this entire process the number of people concerned for my health and interested in my condition has been very encouraging. It cuts against my normal behaviour to confess my illness, my weakness. That feels like whining to me and I despise whining. On the other hand, there can be no doubt that people care and want to know these details and my condition is such that once you start talking about it a little, there is not really much point holding back. As I said, it’s all about blood and piss and shit. Not much modesty left really.
(The only real level of privacy left here is my sex life. Non existant. Even if I had the opportunity, I doubt that I would have the energy. And if I had both opportunity and energy, well let’s just say that I strongly suspect that other limitations would present themselves.)
The fact that the medication that I am taking is not completely controlling my blood sugar and is causing other side effects is a concern naturally. Dr. Pinter is in the process of referring me to a former student of his who is an Endocrinologist at the Montreal General. Dr. Pinter has also advised me that there is a good chance that I will have to go on insulin.
This doesn’t exactly fill me with glee. I recognize that insulin is not a death sentence and that many people take it on a regular basis. I am still not thrilled.
The only thing is… there are these hoof beats.
When You Hear Hoof beats, Don’t Think Zebras
This would be the part of the episode of House where the good doctor would look pensive and start talking about how the initial diagnosis makes no sense. No history of diabetes in his family. Type II diabetes that isn’t responding to a normal treatment option.
Fortunately, as I mentioned above, Dr. Pinter’s favourite diagnostic tool is a shotgun. One of the stray pellets hit an odd result. My blood features an elevated level of cortisol.
Cortisol is the body’s natural version of cortisone. It reduces swelling, and calms the body. In many ways it is the opposite of adrenaline. To check the exact amount of cortisol in the body, you take a jar and fill it with 24 hours worth of urine. As an added test, you take two days worth of hormones and see what affect this has on a second jar full of 24 hours worth of urine.
Most people have cortisol levels in their blood from 100 to 350. My levels in the initial test were 933, or about three times the human norm or as I have been joking – the world’s suckiest super-power.
Excess cortisol can be produced by two different but related causes – the first is Cushing’s Disease (sadly not named after the Hammer Horror actor) which affects patients with lung cancer and patients who have habitually abused steroids. (Yes, I know, savor the irony.) The second cause is Cushing’s Syndrome, normally caused by a small, typically benign tumour in the pituitary gland that causes you to overproduce cortisol.
The cure is an operation where they enter through the nose and basically scoop out the tumour. Terrifying and yet encouraging at the same time. Because excess cortisol can lead to excess blood sugar which can lead to diabetes. Remove the excess cortisol and the diabetes might essentially go away.
This is by no means a confirmed diagnosis although the possibility is strong enough that I am scheduled to have an MRI next Friday. (It’s being done through a private clinic in Montreal to expedite matters. It will set me back $750, but Bell should pay 80% of it back to me.)
Cushing’s Syndrome is a “zebra” diagnosis because it is incredibly rare. Various web-sites that I have looked at have said that it affects one patient in two million; some have said that it affects two patients in one million. I suspect that the discrepancy is related to the larger number being the total number of people affected and the smaller number being the number of men affected. As a general rule, Cushing’s Syndrome affects women more than men and it normally causes not weight loss, but obesity. So, in all of Canada it probably affects about twenty men all told.
The odds of me being one of those twenty are obviously not good. And yet, it is such a seductive diagnosis. Not just because it offers the hope of a permanent cure, but also because it fits with my family history. Growing up my sister had issues with her pituitary gland not producing human growth hormone, so there is in my family a genetic tendency for problems with the pituitary. Admittedly, as my sister has pointed out, it’s not a huge trend, one person, her, in my family has had issues with their pituitary gland. On the other hand, one is infinitely larger than zero. Most seductively, suddenly my diabetes is not a reason for a guilt-trip laden lifestyle regrets, but because I have a freak illness. The morale boost alone is doing wonders for me.
So, I find myself prepared to go have my brain scanned hoping desperately that it will reveal that I do in fact have a tumour. Hoping desperately that the hoof beats in the distance are a herd of zebras…
"Don't Blame CANADA, Blame Yourselves!"
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From: Raleigh, North Carolina
Since last post: 493 days
Last activity: 72 days
|Y!: ||#2 Posted on 20.5.06 1809.09 | Instant Rating: 4.03|
After reading your post, I can not begin to understand what you have to go through. I can understand what diabetes is like from an observers point of view though because my mother and my stepfather both have Type B. I guess through any situation as serious as this you should look at the bright spots throughout your ordeal.
1. You saw a problem and you did something about it. You saw that you were gaining too much weight and you made a positive lifestyle choice to change your life. No matter how you lost the weight, its the fact that you made the change and did not ignore what was going on.
2. When things went wrong, you sought help. This may sound like its common sense, but many times men have too much pride to say that something is wrong with me and I need to find out whats wrong. Pride can be good sometimes but it can also get you killed. Having the fortitude to solve the problem rather than sugar coat it is to be commended.
3. You didn't go into depression. That could have truly been destructive for you as you needed to keep a clear head about you and make significant choices that could affect your quality of life. Feeling sorry for yourself won't help and expressing yourself will only help you more. I hope if you deem it necessary that if things don't get much better that you can find counsel or a friend to help you through the situation.
I guess life really isn't fair and things like this can only make you appreciate how fragile life is. I don't know if they will find a way to solve what is wrong, but I do hope very much that they will be able to control it. I wish nothing but the best for you and I hope things look up for you soon.
From: Stafford Springs, CT
Since last post: 18 days
Last activity: 15 hours
|#3 Posted on 22.5.06 0051.39 | Instant Rating: 6.00|
| know you didn't ask for it, but being a medical technologist, this is my field of expertise and I'd like to put in my two cents. |
First off, your doctor kind of scares me. I understand it is hard in your area to find a doctor who takes new patients, let alone one you like, but your symptoms (other than the weight loss - but even that's not not unheard of) were so text-book Type II diabetes,that the fact he didn't jump on that right away REALLY concerns me.
Second, you may think you want Cushing's syndrome to make yourself feel better, but trust me- YOU DO NOT! Even after the tumor is removed surgically you'll have to get your blood tested constantly for the rest of your life to make sure your cortisol levels are behaving. It's not uncommon for the tumor to just keep growing back as well. And don't forget the radiation therapy with the nausea, weakness, hair loss and general miserableness that come with it. Diabetes is a cake-walk compared to this. People die from Cushing's syndrome, but with proper maintenance and treatment they don't die from diabetes. At any rate, it seems pretty unlikely to be the case. I've heard of Type II folks with weight loss before, but never of someone with Cushing's. Especially in the face - I've seen about a dozen folks with it, and the face weight gain is VERY distinctive - round and puffy like a Cabbage Patch Kid. If your doc is concerned however, an MRI should tell him exactly what he needs to know.
I know you aren't too happy now, but hope is not all lost! With your new diet and proper medication your condition could be hardly even noticeable to you in a few years. You sound so uncomfortable now. Talk to your doctor about other types and combinations of medications. There are billions of them for Type II diabetes and you just need to find the right combo for your body's chemistry. Some meds have side effects that could cause your constipation, difficulty sleeping, leg pain, etc. Some can even cause low morale as well, so don't forget to mention that too!
In the meantime, I'm gonna keep my fingers crossed that your high cortisol was just due to stress from being ill and not knowing why. Trust me, being guilty about your former lifestyle is much, much better than the alternative.
From: South Georgia
Since last post: 496 days
Last activity: 6 days
|#4 Posted on 22.5.06 0913.52 | Instant Rating: 5.01|
|Llakor, you have our support. Keep writing and know that you are in our thoughts and prayers.-- But I gotta agree with Toast Jr, your doc makes me nervous. Hopefully, the endocrinologist he's sending you to will be a little sharper. Good luck and keep us updated.|
There are 10 kinds of people in the world. Those that can read binary and those that can't.
Thirty Millionth Hit
From: The Silver Spring in the Land of Mary.
Since last post: 2 days
Last activity: 1 hour
|#5 Posted on 22.5.06 2041.03 | Instant Rating: 4.05|
|My girlfriend has symptoms of both type I and type II, so I know what you're going though. Hang in there.
"You want to tempt the wrath of the whatever from high atop the thing?" --Toby, West Wing