Jenna routinely sees a physician about once every three months as part of her diabetes management. These are mainly just check-ups during which her log numbers are reviewed as well as her current pump settings. Diet issues, if any, are discussed and a HgA1c is done. The majority of these appointments have been with pediatricians. Twice a year we see her endocrinologist. This is likely the same routine most diabetics follow~ at least type 1, pediatric diabetics.
About six months ago a new diabetic clinic was set up at our local hospital with new funding obtained from the government. The clinic was staffed with a Diabetes Nurse Educator, a dietician and two pediatricians who, I was told, have considerable experience with type 1 diabetes. This meant that the original pediatrician, the one who saw us in the emergency department for Jenna's initial diagnosis, would no longer be Jenna's attending. A new pediatrician was to take over Jenna's care.
Our last appointment nearly two weeks ago was the second one we have had with this new doctor. Prior to actually seeing the doc, our nurse took us to perform the standard, preliminary height and weight check. It was noted that Jenna is tall for her age (something she gets exclusively from her 6'4" father), growing one inch since May and has gained 1 pound since her previous appointment; all good things. We then sat in a conference room with our nurse, the dietitian and an observing pharmacy student, having, in effect, a care conference on Jenna. Her log book was reviewed and the usual praise for how well we are doing was received from our nurse. The dietitian asked if we had any questions or concerns with regards to diet and carb counting. I explained, as I usually do, that I have a good handle on Jenna's diet and how to carb count and that the only thing I am working to perfect is how to handle fatty meals as they tend to creep up on Jenna long after the meal is consumed. I explained that as a result of this, I seldom provide meals containing excessive amounts of fat as it is a)healthier to eat a low fat diet and b)easier on Jenna and us to keep the fat down and not to have to check her multiple times in the night to battle a stubborn, delayed high.
During this portion of the appointment opportunities are presented to discuss concerns and praise is offered to reinforce our efforts and hard work for maintaining good control over Jenna's blood sugars. Compliments regarding how polite and lovely our girls are are expressed and graciously received. In summary, I am given the pat on the back I don't know I need until I get it. It's hard work trying to stay one step ahead of this disease 24/7, especially when virtually all of the leg work is up to myself and my husband to perform. Jenna, being only three, doesn't do much yet with regards to the daily tasks of managing her diabetes. Oh, she can get out a test strip (often popping the cap and flinging all the strips unceremoniously hither and yon for me to have to pick up) and insert the strip into the meter. She can even prepare the lancing device and press the OK button to administer a bolus. And occasionally she can recognize a low for what it is and sound the alarm. But that's about the extent of her involvement. So these "Sunshine-Up-The-Butt" appointments are a bit like gas in the tank for me.
Enter our new pediatrician; a woman probably no more than ten years older than I with a stressed expression on her face. She flips through Jenna's log book, making a comment about how all the numbers make her head swim. This doesn't exactly instill confidence in me regarding her abilities to interpret log data. She then leaves the room while our nurse takes us to an examination room where the good doctor, we are told, will join us again momentarily. Within a couple of minutes the doc arrives once again on the scene. By this time we have been in the clinic for over an hour and my girls are feeling a little restless. Jenna amuses herself by repeatedly sitting up and lying down on the examination table enjoying the crinkly noise of the white paper that covers it. This was an obvious source of annoyance to the doctor and she showed her impatience by asking Jenna to stop, making some mention of her coffee not having kicked in yet. Not necessarily the worst thing in the world, but it was a little odd. Not long after, she reprimanded my oldest daughter when she pushed herself up on the counter in the exam room to get a paper towel from the dispenser which was otherwise out of her reach so that she might wipe her hands. Again, this isn't necessarily jaw-dropping, but at this point I'm wondering why this doctor got into pediatrics if she doesn't have patience for children displaying normal, child-like behaviour.
She then conducted a brief physical examination of Jenna. Sensing her shortness, James suggested that he take our girls back out to the play area when it seemed she no longer required Jenna's presence, while I wrappped things up with the doctor. When it was just myself and the doctor present, she offered up some half-hearted praise while she looked at papers in Jenna's chart. Then, upon spotting Jenna's documented weight, punctuated her token approval with "...she's a little chunky..."
I stared at her unsure, at first, of how to respond and in disbelief that a professional would use such a term to describe anyone, let alone a three year old little girl that is tall for her age and to anyone with eyes, most definitely NOT chunky. She had just performed a physical exam! She palpated her little abdomen! She must have noticed the absence of "chunk"!
And I became angry.
"Are you implying that my child has a weight problem? Because I may have to get my back up!" was my initial response.
She must have sensed that she had awakened a ferocious beast because she began dishing out compliments in an effort to put out the fire she so recklessly started.
"She's doing fine. I'm just saying that we should be alerted to a possible weight problem. Don't worry." she replied as if that would make me feel less offended.
"I'm not the least bit worried. I can't believe that you would say such a thing about a toddler who is still in the process of shedding baby fat and who is already at greater risk of developing an unhealthy relationship with food and a distorted self image by virtue of the fact that she has diabetes; not to mention the fact that she is a female who will enter into a society that has cruel and unrealistic standards of what is considered beautiful. With such disorders as diabulimia and anorexia plaguing young women with diabetes, I'm disappointed that you would be so careless."
More compliments and praise were expelled like so much water on a blazing inferno. But it was too late. I had already made up my mind that this would be the last time we would see this physician. And when she asked me if I was attempting to offer Jenna a low fat diet, I was incredulous and explained that if she had been present for the meeting with the nurse and the dietitian she would realize how ridiculous that question was. She quickly withdrew it.
I spent the rest of the afternoon trying to quell repeated surges of anger each time I recalled what she said in my mind, telling myself to just let it go.
Diabetes is just as much a physical disease as it is a psychological one. This disorder can play havoc with one's head. I am making every attempt to raise healthy, happy, self-confident, well adjusted little girls. I want to surround Jenna with kind, sensitive health care professionals who aren't going to bring their shitty personal crap to work with them. I'll be damned if I am going to take the chance that some thoughtless, short-on-patience, fat-phobic doctor will make a stupid, careless remark with regards to my child's body that would sabotage my efforts to meet that end. Because the next time this doc decides to let her lack of sleep, patience or tact get the better of her, Jenna might still be in the room.
"Doctor... you're fired."
Our life with type 1 diabetes.
Tuesday, August 25, 2009
Wednesday, August 12, 2009
Our Worst Nightmare
What's the thing every parent of a diabetic child fears the most? The thing that causes us to set alarms in the wee hours, to wake with every peep our child makes and to awaken each morning with the uncontrollable urge to dash into our sleeping child's room to make sure they are OK? Nighttime Hypoglycemia. It is that terrifying "snake in the grass" that we are forever in fear of. And recently I was made aware of a family who experienced that very thing and shared their experience on their blog. You can read about it here.
This is a family who did everything right. They monitored their daughter's blood sugars diligently, gave snacks for impending lows and bolused for highs. They checked and rechecked and left nothing to chance. But still, this silent enemy ambushed their precious little girl in her sleep. Luckily, she came out of it just fine and was back to enjoying her vacation with her relatives later that same day. But the anguish her parents had to endure had me sobbing as I read their account of what happened early that morning. It could just as easily have been my little girl in that scenario. I could relate to their story all too well, up to the point of them discovering their little girl unresponsive with foam on her pillow; evidence of the seizure her little body had endured not long before they entered her room.
In my previous post I briefly discussed how exercise is such a boon to people with diabetes. And while it is true that exercise can reign in a blood sugar and have the long term benefit of helping to prevent cardiovascular complications, exercise can work too well and send a person into a state of hypoglycemia many hours after the actual activity. This makes it especially challenging to anticipate the effects physical activity will have on blood sugar levels, especially when things have been seemingly normal for a solid 18 hours, or as "normal" as things get with this cursed disease.
I read stories like this with all the empathy that anyone who can relate to what it is like to parent a child with type 1 diabetes would have. I weep for parents who have had to go through such gut wrenching experiences and feel their pain as if it were my own. It could be me one day blogging about such an experience, as much as I hope and pray that it won't be. But it's what we all face as we continue our non-stop, day and night battle against this lawless and relentless disease.
I also read them to learn from what others experience so that I might side-step the same pitfalls and avert possible disasters. But for the life of me, I can't figure out what I could have done differently here, shy of standing guard beside my child's bed with glucometer in hand performing hourly checks with carb tabs and glucagon at the ready.
I can just see my diabetic nurse educator's face now if I were to tell her I stood guard one night while my daughter slept after an afternoon of swimming in hopes of avoiding a nocturnal hypoglycemic seizure. She would look at me like I had two heads! During our last visit I told her that I still check Jenna at least once in the night most nights to ensure she is safe. She was shocked and I think I even detected a tad of judgement in her eyes that I would be so paranoid as to do this; further evidence that one must live this to understand it. Let her know the hourly unpredictability that type 1 diabetes can dish out with her own child and THEN judge my actions. Some things just can't be taught. They must be experienced.
Needless to say, this family's unfortunate encounter with nocturnal hypoglycemia has had quite an impact on me. It makes me realize just how unpredictable this disease can be. Is it any wonder we parents of children with type 1 diabetes feel compelled to reach out to one another for support? We are all performing a tight rope act while we cradle our precious children in our arms. The pressure is immense. The stakes, unfathomably high. And there is no getting off of this tight rope. We've been thrust on it without our consent and without warning. Within our ranks we find no judgement, only compassion and understanding. Because we know, really know what it's like.
This is a family who did everything right. They monitored their daughter's blood sugars diligently, gave snacks for impending lows and bolused for highs. They checked and rechecked and left nothing to chance. But still, this silent enemy ambushed their precious little girl in her sleep. Luckily, she came out of it just fine and was back to enjoying her vacation with her relatives later that same day. But the anguish her parents had to endure had me sobbing as I read their account of what happened early that morning. It could just as easily have been my little girl in that scenario. I could relate to their story all too well, up to the point of them discovering their little girl unresponsive with foam on her pillow; evidence of the seizure her little body had endured not long before they entered her room.
In my previous post I briefly discussed how exercise is such a boon to people with diabetes. And while it is true that exercise can reign in a blood sugar and have the long term benefit of helping to prevent cardiovascular complications, exercise can work too well and send a person into a state of hypoglycemia many hours after the actual activity. This makes it especially challenging to anticipate the effects physical activity will have on blood sugar levels, especially when things have been seemingly normal for a solid 18 hours, or as "normal" as things get with this cursed disease.
I read stories like this with all the empathy that anyone who can relate to what it is like to parent a child with type 1 diabetes would have. I weep for parents who have had to go through such gut wrenching experiences and feel their pain as if it were my own. It could be me one day blogging about such an experience, as much as I hope and pray that it won't be. But it's what we all face as we continue our non-stop, day and night battle against this lawless and relentless disease.
I also read them to learn from what others experience so that I might side-step the same pitfalls and avert possible disasters. But for the life of me, I can't figure out what I could have done differently here, shy of standing guard beside my child's bed with glucometer in hand performing hourly checks with carb tabs and glucagon at the ready.
I can just see my diabetic nurse educator's face now if I were to tell her I stood guard one night while my daughter slept after an afternoon of swimming in hopes of avoiding a nocturnal hypoglycemic seizure. She would look at me like I had two heads! During our last visit I told her that I still check Jenna at least once in the night most nights to ensure she is safe. She was shocked and I think I even detected a tad of judgement in her eyes that I would be so paranoid as to do this; further evidence that one must live this to understand it. Let her know the hourly unpredictability that type 1 diabetes can dish out with her own child and THEN judge my actions. Some things just can't be taught. They must be experienced.
Needless to say, this family's unfortunate encounter with nocturnal hypoglycemia has had quite an impact on me. It makes me realize just how unpredictable this disease can be. Is it any wonder we parents of children with type 1 diabetes feel compelled to reach out to one another for support? We are all performing a tight rope act while we cradle our precious children in our arms. The pressure is immense. The stakes, unfathomably high. And there is no getting off of this tight rope. We've been thrust on it without our consent and without warning. Within our ranks we find no judgement, only compassion and understanding. Because we know, really know what it's like.
Monday, August 3, 2009
Our Incredible Summer So Far...
Where have I been? Why I've been enjoying one of the best summers I've had since I can remember! A summer filled with travel, adventure, growth and the realization that Diabetes will NOT slow us down. We have enjoyed every minute of this sun-drenched season and will continue to squeeze every last drop of fun from it until the nights cool, the garden fades and school resumes.
Travelling to Ontario to visit my family at the end of June was our first big trip since Jenna's diagnosis and as I mentioned here before, the anticipation of this trip caused me much anxiety. Common sense told me I had little to fear and I just needed to get this first trip under our belts to prove that everything was going to be OK. And it was. In fact it was awesome! We had so much fun with my sister and her family and the worst part of the entire trip was having to say goodbye.
Jenna's blood sugars were a little elevated for the first day or two. I attribute this to the stress of travelling and perhaps the time change. But for the rest of our stay her numbers were pretty darn stellar, considering I guessed at a lot of the carb counts and seldom weighed anything, in spite of my sister providing, among other things to make our life easier while there, a lovely food scale.
Yes, I couldn't have asked for much better control during our stay. When things really got dicey was after our evening flight out of Toronto, homeward bound, arriving in Victoria around midnight Pacific time. That meant around 3:00am Eastern time which was the clock Jazmine and Jenna were on. Jenna's numbers had trouble staying out of the mid to high teens for a good two days afterward. I'm going to pin that one exclusively on the time change and severe sleep deprivation, in spite of two solid hours of sleep Jenna was able to log while we were 40 000 feet off the ground.
A camping trip to Tofino/Long Beach, a favourite destination of ours, on our very own Vancouver Island marked mid July for us. We experienced the beauty of Western Canada's temperate rain forests, basked in the warm sun and played in the Pacific Ocean surf, building sand castles and flying kites for three all-too-short days. It was heaven.
We encountered a minor hiccup on our first day in Tofino when, on the morning of our departure, we performed a site change on Jenna prior to leaving. The new site was on her abdomen, a place she had only allowed us to do an insertion on once before. Jenna suddenly became anxious about the insertion just as I was performing it and recoiled, contracting her abdominal muscles causing a skin fold to occur beneath the new infusion set. I fiddled with it and was able to get rid of the skin fold underneath the set. But I had some concerns about how effective this new site would be as a result. About five hours later, when we arrived at our campsite and I tested Jenna for a snack, my concerns were justified. I can't remember the exact value, but I believe it was well into the twenties. And I knew that this new site was no good. We had to perform another site change, much to Jenna's dismay, check for ketones and do a hefty correction.
One day during our stay, we hiked through two kilometers of temperate rain forest with our girls. While this isn't any great feat for healthy, able-bodied adults, it certainly was a cause of great pride for us when our girls, especially three year old Jenna, hiked the mildly challenging trail on foot for the entire two kilometers. Only at the end of the second kilometer did she mention that her legs were tired and would appreciate a shoulder ride from Daddy back to the truck.
We followed this hike with a stop at Long Beach where Jenna was inspired by this beach's spacious, vastness to run like the wind for nearly a half hour, non-stop. Needless to say, her blood sugar was spot on for the remainder of the day. She even enjoyed a granola bar snack without requiring a bolus!
So, what have I learned from these experiences? Well, I've learned that Jenna needs to be a very willing participant while a site change is being performed on her abdomen. I've learned that time change and sleep deprivation combined with a five hour flight wreak havoc on Jenna's blood sugar, especially when we lose time. Next time I may just up her basals a tad to help keep on top of things. Another valuable lesson; aside from insulin and pumps, exercise is a diabetics best friend. I already knew this. But when I saw it's effects so clearly after a day of intense physical activity, I realized just how truly valuable a tool this is to have in the diabetes tool box.
But I think the most valuable lesson I've learned is that managing Jenna's diabetes doesn't have to slow us down at all. With proper planning and preparation, we can enjoy travelling just like any other family. I've gained a confidence in my own ability to anticipate certain situations and plan accordingly. I know now what I need to do to organize a trip that minimizes stress and maximizes fun! I'm feeling empowered. And I'm sensing the homebody in me is taking a backseat to my adventurous side; the side that wants to experience more of the world with my incredible family.
Travelling to Ontario to visit my family at the end of June was our first big trip since Jenna's diagnosis and as I mentioned here before, the anticipation of this trip caused me much anxiety. Common sense told me I had little to fear and I just needed to get this first trip under our belts to prove that everything was going to be OK. And it was. In fact it was awesome! We had so much fun with my sister and her family and the worst part of the entire trip was having to say goodbye.
Jenna's blood sugars were a little elevated for the first day or two. I attribute this to the stress of travelling and perhaps the time change. But for the rest of our stay her numbers were pretty darn stellar, considering I guessed at a lot of the carb counts and seldom weighed anything, in spite of my sister providing, among other things to make our life easier while there, a lovely food scale.
Yes, I couldn't have asked for much better control during our stay. When things really got dicey was after our evening flight out of Toronto, homeward bound, arriving in Victoria around midnight Pacific time. That meant around 3:00am Eastern time which was the clock Jazmine and Jenna were on. Jenna's numbers had trouble staying out of the mid to high teens for a good two days afterward. I'm going to pin that one exclusively on the time change and severe sleep deprivation, in spite of two solid hours of sleep Jenna was able to log while we were 40 000 feet off the ground.
A camping trip to Tofino/Long Beach, a favourite destination of ours, on our very own Vancouver Island marked mid July for us. We experienced the beauty of Western Canada's temperate rain forests, basked in the warm sun and played in the Pacific Ocean surf, building sand castles and flying kites for three all-too-short days. It was heaven.
We encountered a minor hiccup on our first day in Tofino when, on the morning of our departure, we performed a site change on Jenna prior to leaving. The new site was on her abdomen, a place she had only allowed us to do an insertion on once before. Jenna suddenly became anxious about the insertion just as I was performing it and recoiled, contracting her abdominal muscles causing a skin fold to occur beneath the new infusion set. I fiddled with it and was able to get rid of the skin fold underneath the set. But I had some concerns about how effective this new site would be as a result. About five hours later, when we arrived at our campsite and I tested Jenna for a snack, my concerns were justified. I can't remember the exact value, but I believe it was well into the twenties. And I knew that this new site was no good. We had to perform another site change, much to Jenna's dismay, check for ketones and do a hefty correction.
One day during our stay, we hiked through two kilometers of temperate rain forest with our girls. While this isn't any great feat for healthy, able-bodied adults, it certainly was a cause of great pride for us when our girls, especially three year old Jenna, hiked the mildly challenging trail on foot for the entire two kilometers. Only at the end of the second kilometer did she mention that her legs were tired and would appreciate a shoulder ride from Daddy back to the truck.
We followed this hike with a stop at Long Beach where Jenna was inspired by this beach's spacious, vastness to run like the wind for nearly a half hour, non-stop. Needless to say, her blood sugar was spot on for the remainder of the day. She even enjoyed a granola bar snack without requiring a bolus!
So, what have I learned from these experiences? Well, I've learned that Jenna needs to be a very willing participant while a site change is being performed on her abdomen. I've learned that time change and sleep deprivation combined with a five hour flight wreak havoc on Jenna's blood sugar, especially when we lose time. Next time I may just up her basals a tad to help keep on top of things. Another valuable lesson; aside from insulin and pumps, exercise is a diabetics best friend. I already knew this. But when I saw it's effects so clearly after a day of intense physical activity, I realized just how truly valuable a tool this is to have in the diabetes tool box.
But I think the most valuable lesson I've learned is that managing Jenna's diabetes doesn't have to slow us down at all. With proper planning and preparation, we can enjoy travelling just like any other family. I've gained a confidence in my own ability to anticipate certain situations and plan accordingly. I know now what I need to do to organize a trip that minimizes stress and maximizes fun! I'm feeling empowered. And I'm sensing the homebody in me is taking a backseat to my adventurous side; the side that wants to experience more of the world with my incredible family.
Wednesday, June 24, 2009
Pink Elephants and The Promise of a Cure
I'm not the type to just accept what I'm told without question. I try to think for myself as much as possible. This was, to some degree, a cause of annoyance for my God-fearing Mother who would become exasperated when, growing up I would ask some pretty bold questions with regards to religion. When her answers to my questions would leave me with still more question and her with a dwindling supply of answers, she would resort to telling me that I must just "have blind faith." That one never sat well with me, much to her chagrin. We live in a world where too many of us swallow information we are fed without question and never use critical thinking skills to discern how accurate, relevant or credible that information is. I have been known to hold some rather realistic (some might say pessimistic) views about the ways of the world.
As a nurse and upon the orders of physicians I have doled out more pills and medications than I care to admit. A problem is perceived, a doctor is consulted, a prescription is written and another pill is added to a patients medication profile. The more pills I administered the more a nagging question kept creeping up; just how necessary and effective are all these PILLS!? And furthermore, just how rich are the pharmaceutical companies getting off of people who never ask that question but just trust their doctor to be doing what is necessary and effective?
Needless to say I am not one to run to the doctor on a whim. And I only take my children to see a physician when I am certain the symtoms warrant it. I'm well aware of the serious dilemma we face with regards to the overuse of antibiotics and I'm sure that problem has been exacerbated by people, especially worried parents, who insist on taking their children to the doctor for every little sniffle refusing to leave without a script for antibiotics. I am very suspicious of the pharmaceutical industry and so it galls me that, until (unless) a cure is found I am at their mercy with regards to my little girl's very real need for pharmaceuticals. And not only does she need insulin, she requires a long list of other medical supplies to remain healthy. And in the years to come she is liable to require even more pharmaceuticals to maintain her health like blood pressure and cholesterol lowering meds. At the risk of sounding cynical, the pharmaceutical companies must view diabetes, and indeed all chronic conditions as their "cash cow". The money they make and will continue to make in "helping" people to "manage" their diseases, provided no cures are found must be far more than obscene.
So where, may I be so bold as to ask, is the impetus to find a cure?
Now, having a daughter with type 1 diabetes puts me in an interesting position, in light of my views. On the one hand, I have significant doubts that human kind will ever see a cure for any of the handful of diseases that are presently "treatable" with a lifelong reliance on pharmaceuticals and medical devices. On the other hand I am compelled to remain hopeful that a cure will be found and made available. The notion that my beautiful baby girl is destined to live her entire life "managing" diabetes is almost too much for me to bear. I must remain hopeful, in spite of my realism; in spite of my cynicism.
This year for the first time I did what every parent of a child with diabetes does. I, along with my dear family, some close, supportive friends and a slew of other heart-broken parents "Walked To Find A Cure" for my little girl and every other person, young and old, who has to live with type 1 diabetes. I petitioned friends and family for pledges to aid in this quest. And as I did this I thought of all the parents who were drafted into this war before me. Parents who's children are now grown, living independently, taking full responsibility for their diabetes. These parents had the same wide-eyed, innocent belief that a cure was "just steps away". And year after year they went through the motions, sought pledges, donned the runners and walked. And hoped.
I would like to talk with a few of those parents who are veterans of this seemingly endless battle. Do they still maintain the same hope for a cure as they did in the first few years after their child's diagnosis? And what about all of the children who are now grown? Do they hold on to a strong faith that their promised cure is close? Or do they look at us, the new recruits with a mix of compassion and empathy for the wide-eyed innocence we possess, knowing it won't last. It can't last. One can only believe in the promised land for so long before the repeated disappointment wears one down and breaks one's spirit.
I apologize for what seems like a very negative post. I debated long and hard about how and if I should broach this subject. I know as parents we need to hang on to hope. It's too painful to contemplate what I am suggesting. Sometimes I wish I could just take my Mother's advice and hold on to "blind faith." But this has been weighing on my mind since my daughter's diagnosis. And I'm not the kind of person to subscribe to a blind, unquestioning belief in anything. I can't be alone in feeling this way. And I can't ignore the big pink elephant standing smack-dab in the middle of the room anymore.
As a nurse and upon the orders of physicians I have doled out more pills and medications than I care to admit. A problem is perceived, a doctor is consulted, a prescription is written and another pill is added to a patients medication profile. The more pills I administered the more a nagging question kept creeping up; just how necessary and effective are all these PILLS!? And furthermore, just how rich are the pharmaceutical companies getting off of people who never ask that question but just trust their doctor to be doing what is necessary and effective?
Needless to say I am not one to run to the doctor on a whim. And I only take my children to see a physician when I am certain the symtoms warrant it. I'm well aware of the serious dilemma we face with regards to the overuse of antibiotics and I'm sure that problem has been exacerbated by people, especially worried parents, who insist on taking their children to the doctor for every little sniffle refusing to leave without a script for antibiotics. I am very suspicious of the pharmaceutical industry and so it galls me that, until (unless) a cure is found I am at their mercy with regards to my little girl's very real need for pharmaceuticals. And not only does she need insulin, she requires a long list of other medical supplies to remain healthy. And in the years to come she is liable to require even more pharmaceuticals to maintain her health like blood pressure and cholesterol lowering meds. At the risk of sounding cynical, the pharmaceutical companies must view diabetes, and indeed all chronic conditions as their "cash cow". The money they make and will continue to make in "helping" people to "manage" their diseases, provided no cures are found must be far more than obscene.
So where, may I be so bold as to ask, is the impetus to find a cure?
Now, having a daughter with type 1 diabetes puts me in an interesting position, in light of my views. On the one hand, I have significant doubts that human kind will ever see a cure for any of the handful of diseases that are presently "treatable" with a lifelong reliance on pharmaceuticals and medical devices. On the other hand I am compelled to remain hopeful that a cure will be found and made available. The notion that my beautiful baby girl is destined to live her entire life "managing" diabetes is almost too much for me to bear. I must remain hopeful, in spite of my realism; in spite of my cynicism.
This year for the first time I did what every parent of a child with diabetes does. I, along with my dear family, some close, supportive friends and a slew of other heart-broken parents "Walked To Find A Cure" for my little girl and every other person, young and old, who has to live with type 1 diabetes. I petitioned friends and family for pledges to aid in this quest. And as I did this I thought of all the parents who were drafted into this war before me. Parents who's children are now grown, living independently, taking full responsibility for their diabetes. These parents had the same wide-eyed, innocent belief that a cure was "just steps away". And year after year they went through the motions, sought pledges, donned the runners and walked. And hoped.
I would like to talk with a few of those parents who are veterans of this seemingly endless battle. Do they still maintain the same hope for a cure as they did in the first few years after their child's diagnosis? And what about all of the children who are now grown? Do they hold on to a strong faith that their promised cure is close? Or do they look at us, the new recruits with a mix of compassion and empathy for the wide-eyed innocence we possess, knowing it won't last. It can't last. One can only believe in the promised land for so long before the repeated disappointment wears one down and breaks one's spirit.
I apologize for what seems like a very negative post. I debated long and hard about how and if I should broach this subject. I know as parents we need to hang on to hope. It's too painful to contemplate what I am suggesting. Sometimes I wish I could just take my Mother's advice and hold on to "blind faith." But this has been weighing on my mind since my daughter's diagnosis. And I'm not the kind of person to subscribe to a blind, unquestioning belief in anything. I can't be alone in feeling this way. And I can't ignore the big pink elephant standing smack-dab in the middle of the room anymore.
Wednesday, June 17, 2009
Making Connections
We went out for supper a couple of weeks ago. No where fancy. Just a place where I knew they had nutritional info available and there were some healthy, low fat choices. This particular restaurant has the added bonus of a treasure chest my girls can rummage through to choose a toy while Mom and Dad pay the bill.
While we sat perusing the menu I proceeded to perform our pre-meal blood sugar check on Jenna. Enter our server--a young woman named Jen, about 20 years old. She sees me squeezing a drop of blood from Jenna's tiny finger and says with a great deal of genuine sympathy "Oh... she has diabetes? That makes me so sad to see little ones having to deal with this." She then proceeds to remove her own insulin pump from it's hiding spot in the waist of her black work pants.
I nearly leaped into her arms, the poor girl.
"OH MY GOSH!! Jenna's a pumper too!!" I blurted out with little regard for the other diners present or how Jenna might feel about me 'outing' her. I admit, I could have played it a bit cooler. But I figure I'm still somewhat of a rookie at the whole culture that is diabetes. I asked Jenna if she wanted to show Jen her pump too. Jenna was a little guarded but after a moments hesitation while she assessed the situation and realized she had something in common with this person, she unzipped her pump case and somewhat proudly showed off her pretty pink pump.
And so began a dialogue with this very good natured young woman who just happened to have type 1 diabetes and was by chance our waitress that night and just happened to arrive on the scene while I was testing Jenna's sugar. We discussed pumps, diabetes camps, which she highly recommended for Jenna when she is a little older, endo appointments, her rebellious teen years and other stuff 'diabetes'. She assured me that Jenna is going to be just fine with this. I could have cried when she said this to me. Even now as I recall her saying it I get emotional.
The bond that diabetes creates between people who are otherwise strangers still amazes me. It is created out of a need to connect with people who understand the demands--the relentlessness of this disease. Because as people with type 1 diabetes and the families who love and care for them know, it is something that must be lived, 24-7 to be appreciated for the challenges it presents and the physical and emotional chaos it can cause.
Thanks to all the 'Jen's' out there for your compassion, willingness to share and offer encouragement and to simply say "I understand." That includes all you bloggers out there who share your journeys with diabetes online whether that journey is as the parent of a child with diabetes or as an adult living with the disease. This is one Mom of a child with diabetes who is incredibly glad you're out there.
While we sat perusing the menu I proceeded to perform our pre-meal blood sugar check on Jenna. Enter our server--a young woman named Jen, about 20 years old. She sees me squeezing a drop of blood from Jenna's tiny finger and says with a great deal of genuine sympathy "Oh... she has diabetes? That makes me so sad to see little ones having to deal with this." She then proceeds to remove her own insulin pump from it's hiding spot in the waist of her black work pants.
I nearly leaped into her arms, the poor girl.
"OH MY GOSH!! Jenna's a pumper too!!" I blurted out with little regard for the other diners present or how Jenna might feel about me 'outing' her. I admit, I could have played it a bit cooler. But I figure I'm still somewhat of a rookie at the whole culture that is diabetes. I asked Jenna if she wanted to show Jen her pump too. Jenna was a little guarded but after a moments hesitation while she assessed the situation and realized she had something in common with this person, she unzipped her pump case and somewhat proudly showed off her pretty pink pump.
And so began a dialogue with this very good natured young woman who just happened to have type 1 diabetes and was by chance our waitress that night and just happened to arrive on the scene while I was testing Jenna's sugar. We discussed pumps, diabetes camps, which she highly recommended for Jenna when she is a little older, endo appointments, her rebellious teen years and other stuff 'diabetes'. She assured me that Jenna is going to be just fine with this. I could have cried when she said this to me. Even now as I recall her saying it I get emotional.
The bond that diabetes creates between people who are otherwise strangers still amazes me. It is created out of a need to connect with people who understand the demands--the relentlessness of this disease. Because as people with type 1 diabetes and the families who love and care for them know, it is something that must be lived, 24-7 to be appreciated for the challenges it presents and the physical and emotional chaos it can cause.
Thanks to all the 'Jen's' out there for your compassion, willingness to share and offer encouragement and to simply say "I understand." That includes all you bloggers out there who share your journeys with diabetes online whether that journey is as the parent of a child with diabetes or as an adult living with the disease. This is one Mom of a child with diabetes who is incredibly glad you're out there.
Tuesday, June 9, 2009
A Year To The Day
Today was a day like any other. Nothing of great significance happened--the usual routine. It's what happened exactly one year prior to today that makes this day significant for me and my family. Jenna was diagnosed with Type 1 Diabetes 365 days ago and my maternal heart broke like it had never been broken before.
One year ago tonight I had just settled my girls to bed and James had stepped out to purchase more night time diapers for Jenna--as she was using an ever increasing amount of them--when the phone rang.
I remember the sound of the physician's voice on the phone that night, so kind and full of compassion, enhanced by a comforting Scottish brogue. She had placed an urgent call to me regarding the results of a random blood sugar that had been drawn on Jenna that morning at my request. I knew she had to be a mother too as she was genuinely sympathetic to my anguish while she told me I had to bundle up my two year old baby and go to the hospital emerg where they were expecting our arrival. I asked her if Jenna's blood sugar was high. Her reply was heavy with regret when she said "yes dear." I asked her what it was. She wouldn't tell me the lab value but only said, with still more regret "...very high, dear." I sobbed uncontrollably.
James came home moments after I hung up the phone and I had to tell him our baby was in trouble and we had to get her to the hospital right away. I remember pacing non-stop and repeatedly hitting and kicking the couch with all my might while James called our neighbours to come stay with Jazmine until his Mom could make the hour drive up island to stay the night. I couldn't stop hitting and kicking. I had to release the pain somehow. I was so pissed off. I felt cheated on Jenna's behalf. I knew what this diagnosis meant for her. I knew that life would never be the same. And she was so very young--still very much my baby.
I remember during the weeks and months after Jenna's diagnosis having a heartache that took my breath away each time I would remember a time or event before her diagnosis. It was such a painful realization; knowing that she would never again start a day without a blood sugar check, that she would forever be dependent on pharmaceuticals for her very survival and that simple viral infections meant potential hospital stays. I grieved profoundly for the simpler days before her diagnosis when my daughter didn't have any broken organs and her body hadn't yet betrayed her. But those days were gone and knowing that left me feeling desperate for the passage of time to help ease the pain of remembering as only the passage of time can. I kept my eyes firmly fixed on the one year mark. I knew that getting through all the 'firsts' would bring about a healing acceptance that I so badly needed.
A year has passed. Acceptance has taken place. Jenna has had to tap into reserves of courage and strength that no two year old should ever have to. And we, as a family, have had to adapt to our new way of life--of carb counting, blood sugar checks, boluses and corrections, walking the fine line between hypo and hyperglycemia on our own personal, lifelong quest for "control".
But we are grateful. Our girls are thriving. Life is still good.
And life goes on.
One year ago tonight I had just settled my girls to bed and James had stepped out to purchase more night time diapers for Jenna--as she was using an ever increasing amount of them--when the phone rang.
I remember the sound of the physician's voice on the phone that night, so kind and full of compassion, enhanced by a comforting Scottish brogue. She had placed an urgent call to me regarding the results of a random blood sugar that had been drawn on Jenna that morning at my request. I knew she had to be a mother too as she was genuinely sympathetic to my anguish while she told me I had to bundle up my two year old baby and go to the hospital emerg where they were expecting our arrival. I asked her if Jenna's blood sugar was high. Her reply was heavy with regret when she said "yes dear." I asked her what it was. She wouldn't tell me the lab value but only said, with still more regret "...very high, dear." I sobbed uncontrollably.
James came home moments after I hung up the phone and I had to tell him our baby was in trouble and we had to get her to the hospital right away. I remember pacing non-stop and repeatedly hitting and kicking the couch with all my might while James called our neighbours to come stay with Jazmine until his Mom could make the hour drive up island to stay the night. I couldn't stop hitting and kicking. I had to release the pain somehow. I was so pissed off. I felt cheated on Jenna's behalf. I knew what this diagnosis meant for her. I knew that life would never be the same. And she was so very young--still very much my baby.
I remember during the weeks and months after Jenna's diagnosis having a heartache that took my breath away each time I would remember a time or event before her diagnosis. It was such a painful realization; knowing that she would never again start a day without a blood sugar check, that she would forever be dependent on pharmaceuticals for her very survival and that simple viral infections meant potential hospital stays. I grieved profoundly for the simpler days before her diagnosis when my daughter didn't have any broken organs and her body hadn't yet betrayed her. But those days were gone and knowing that left me feeling desperate for the passage of time to help ease the pain of remembering as only the passage of time can. I kept my eyes firmly fixed on the one year mark. I knew that getting through all the 'firsts' would bring about a healing acceptance that I so badly needed.
A year has passed. Acceptance has taken place. Jenna has had to tap into reserves of courage and strength that no two year old should ever have to. And we, as a family, have had to adapt to our new way of life--of carb counting, blood sugar checks, boluses and corrections, walking the fine line between hypo and hyperglycemia on our own personal, lifelong quest for "control".
But we are grateful. Our girls are thriving. Life is still good.
And life goes on.
Wednesday, May 13, 2009
Diabetes: A Family Affair
Diabetes is without a doubt a family disease. It affects us all. And lately it has become necessary for me to examine what impact its presence has had on my oldest, non-diabetic daughter.
Jazmine has had a multitude of somatic complaints lately and has, indeed, been rather preoccupied with her physical well-being. Usually I'm quite rational and can weed out the serious complaints from the innocuous grumbling. But certain specific complaints have been repeated enough times that I felt it warranted a visit to the doc to rule out any problems.
The doctor that saw her was the same one that was somewhat dismissive of my concerns about Jenna's symptoms almost a year ago. He downplayed my fears that Jenna was displaying signs of type 1 diabetes and reluctantly wrote a requisition for blood work, telling me during a late Friday afternoon appointment that there was no rush and I could wait until the following Monday to have it done. He also denied my request to have Jenna checked in his office with a glucometer, stating he "...didn't want her to hate him." After a very long weekend of waiting, it was discovered that Jenna's blood sugar was in the mid 40's and we were in the emergency department that following Monday night with a diagnosis of type 1 diabetes.
So in light of our unfortunate history with this otherwise kind and attentive physician, it isn't surprising that he aired on the side of caution this time and ordered a visit to an opthamologist when Jazmine reported vision problems; specifically, she stated that "...things look far away." When I questioned her at home about this she would be vague and unable to elaborate. She had no headaches, nor trouble seeing clearly (I conducted my own little visual acuity test to discern this) and her peripheral vision seemed fine. My mommy gut told me it was nothing to be concerned about and I wasn't even going to mention it during this visit. My focus was on her complaints of tummy aches upon drinking milk which had me thinking she had a legitimate intolerance to lactose. But while Jazmine had the medical spotlight she took the opportunity to itemize her entire list of perceived deficiencies.
Today was her opthamologist appointment. Jazmine was almost giddy with excitement when we drove into the parking lot, running up the walkway ahead of me and entering the building without a moment's hesitation. I was told she would have to have dilating drops instilled in her eyes during this exam. From my own experience I know these drops are stingers. And the temporary visual disturbance that follows is mildly unpleasant. If Jazmine was merely seeking the same attention she sees her little sister getting in relation to her diabetes management, I couldn't help but wonder if this experience would quell that desire in the future. Jazmine did find the drops painful and was not at all happy with the resulting blurry vision. She even vocalized her regret over being excited about the appointment. And as for Jenna, she was only too happy to be a bystander this time instead of the focus of attention.
As I suspected, Jazmine's eyes are fine. I had a little talk with the opthamologist about the possibility that Jazmine may be going through a coping stage with regards to her younger sister's chronic condition. He agreed that that was a strong possibility and is, in fact quite common among siblings in similar situations.
I realize children have different perspectives and the way they perceive and cope can be difficult for adults to relate to given that we are so far removed from that stage of our lives. I also understand that witnessing what Jenna has had to endure this past year must have been difficult for Jazmine. She is incredibly sensitive and when she feels a feeling, she really FEELS it. I used to be very accommodating and understanding of Jazmine's sensitivity, back when I still had time to be. But life for me is much different now. As much as I strive to be organized and prepared I, nevertheless, find the demands of daily life to be overwhelming at times. I often barely have time to attend to my most basic of needs in a timely fashion. So it was a challenge for me to be patient and understanding with this whole process of allowing Jazmine her need for attention. I had numerous short-tempered moments throughout the course of the day today. I struggled to remain calm while I attempted to corral two lively and excited little girls in a waiting room full of elderly people. And when, while we were waiting to be seen by the doctor, my girls suddenly decided they had to satisfy their curiosity and visit the bathroom only to announce once we had all paraded into said bathroom that neither of them had to go after all... well... suffice to say those elderly people in the waiting room may have been a reluctant audience to my rather loud lecture about not enjoying being in a public restroom for no good reason. This was all a big, exciting adventure for my girls. But for me, it meant having to take time out of an already busy day to humour a little girl's desire for attention.
I have always worked at being sensitive to Jazmine's needs in relation to the attention Jenna requires for proper management of her diabetes. And I have worked hard at avoiding focusing too much on Jenna's diabetes. I never refer to Jenna as being "sick" because she's not; quite the opposite. I never use her diabetes as an excuse for Jenna receiving special treatment and I try to be careful not to blame the reason for Jazmine being denied something she wants on Jenna having diabetes. But in spite of these efforts, I think Jazmine is still working through some emotions related to having a sibling with greater than average needs.
Jazmine has been taking enzyme tablets with each serving of milk as a result of her initial doctor's appointment which appears to be helping ease the gastric distress she was having. She seems to be enjoying having a medical requirement prior to meals, much like Jenna has with requiring blood sugar checks. And even though at times I discretely roll my eyes when she makes big production of bringing it to my attention if her lactose enzyme pill doesn't accompany her glass of milk at meal times...
"Oh NO! My pill! Mom, you forgot my pill!"
"Oh that's right. Hold on... there you go. Now you can drink your milk."
"Thanks Mom."
...I respect her need to have a little special treatment of her own.
Jazmine has had a multitude of somatic complaints lately and has, indeed, been rather preoccupied with her physical well-being. Usually I'm quite rational and can weed out the serious complaints from the innocuous grumbling. But certain specific complaints have been repeated enough times that I felt it warranted a visit to the doc to rule out any problems.
The doctor that saw her was the same one that was somewhat dismissive of my concerns about Jenna's symptoms almost a year ago. He downplayed my fears that Jenna was displaying signs of type 1 diabetes and reluctantly wrote a requisition for blood work, telling me during a late Friday afternoon appointment that there was no rush and I could wait until the following Monday to have it done. He also denied my request to have Jenna checked in his office with a glucometer, stating he "...didn't want her to hate him." After a very long weekend of waiting, it was discovered that Jenna's blood sugar was in the mid 40's and we were in the emergency department that following Monday night with a diagnosis of type 1 diabetes.
So in light of our unfortunate history with this otherwise kind and attentive physician, it isn't surprising that he aired on the side of caution this time and ordered a visit to an opthamologist when Jazmine reported vision problems; specifically, she stated that "...things look far away." When I questioned her at home about this she would be vague and unable to elaborate. She had no headaches, nor trouble seeing clearly (I conducted my own little visual acuity test to discern this) and her peripheral vision seemed fine. My mommy gut told me it was nothing to be concerned about and I wasn't even going to mention it during this visit. My focus was on her complaints of tummy aches upon drinking milk which had me thinking she had a legitimate intolerance to lactose. But while Jazmine had the medical spotlight she took the opportunity to itemize her entire list of perceived deficiencies.
Today was her opthamologist appointment. Jazmine was almost giddy with excitement when we drove into the parking lot, running up the walkway ahead of me and entering the building without a moment's hesitation. I was told she would have to have dilating drops instilled in her eyes during this exam. From my own experience I know these drops are stingers. And the temporary visual disturbance that follows is mildly unpleasant. If Jazmine was merely seeking the same attention she sees her little sister getting in relation to her diabetes management, I couldn't help but wonder if this experience would quell that desire in the future. Jazmine did find the drops painful and was not at all happy with the resulting blurry vision. She even vocalized her regret over being excited about the appointment. And as for Jenna, she was only too happy to be a bystander this time instead of the focus of attention.
As I suspected, Jazmine's eyes are fine. I had a little talk with the opthamologist about the possibility that Jazmine may be going through a coping stage with regards to her younger sister's chronic condition. He agreed that that was a strong possibility and is, in fact quite common among siblings in similar situations.
I realize children have different perspectives and the way they perceive and cope can be difficult for adults to relate to given that we are so far removed from that stage of our lives. I also understand that witnessing what Jenna has had to endure this past year must have been difficult for Jazmine. She is incredibly sensitive and when she feels a feeling, she really FEELS it. I used to be very accommodating and understanding of Jazmine's sensitivity, back when I still had time to be. But life for me is much different now. As much as I strive to be organized and prepared I, nevertheless, find the demands of daily life to be overwhelming at times. I often barely have time to attend to my most basic of needs in a timely fashion. So it was a challenge for me to be patient and understanding with this whole process of allowing Jazmine her need for attention. I had numerous short-tempered moments throughout the course of the day today. I struggled to remain calm while I attempted to corral two lively and excited little girls in a waiting room full of elderly people. And when, while we were waiting to be seen by the doctor, my girls suddenly decided they had to satisfy their curiosity and visit the bathroom only to announce once we had all paraded into said bathroom that neither of them had to go after all... well... suffice to say those elderly people in the waiting room may have been a reluctant audience to my rather loud lecture about not enjoying being in a public restroom for no good reason. This was all a big, exciting adventure for my girls. But for me, it meant having to take time out of an already busy day to humour a little girl's desire for attention.
I have always worked at being sensitive to Jazmine's needs in relation to the attention Jenna requires for proper management of her diabetes. And I have worked hard at avoiding focusing too much on Jenna's diabetes. I never refer to Jenna as being "sick" because she's not; quite the opposite. I never use her diabetes as an excuse for Jenna receiving special treatment and I try to be careful not to blame the reason for Jazmine being denied something she wants on Jenna having diabetes. But in spite of these efforts, I think Jazmine is still working through some emotions related to having a sibling with greater than average needs.
Jazmine has been taking enzyme tablets with each serving of milk as a result of her initial doctor's appointment which appears to be helping ease the gastric distress she was having. She seems to be enjoying having a medical requirement prior to meals, much like Jenna has with requiring blood sugar checks. And even though at times I discretely roll my eyes when she makes big production of bringing it to my attention if her lactose enzyme pill doesn't accompany her glass of milk at meal times...
"Oh NO! My pill! Mom, you forgot my pill!"
"Oh that's right. Hold on... there you go. Now you can drink your milk."
"Thanks Mom."
...I respect her need to have a little special treatment of her own.
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