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June 30, 2007

Diabetes Doesn't Have Me - Kit's Story

Kit's Story.

When people find out I have type 1 diabetes, the first question I usually hear is “Were you born with it?” The answer is no. I was born March 27, 1984, a perfectly healthy, if not big at 9 lbs. 4oz, baby girl. I was 3 days early… I dread to think the pain I would have caused my poor mother had I been on time and even bigger than I already was.Mum didn’t have an easy pregnancy. In fact, a little known fact about me is that I was a twin. Mum nearly lost both of us at 7 weeks gestation, but we were fighters, even back then. Trouble struck again at 14 weeks, and my twin didn’t make it. It’s funny, but sometimes, even now, I wonder what it would have been like to have known him or her. Would we have looked alike, had the same opinions on things, liked the same foods?? Would we have been completely different in every way, hated what the other loved? But, more nagging than any of those thoughts, is this one: Would he or she have had diabetes too? It’s hard to believe that at age 23, I miss the presence of a twin that I didn’t even know… but somehow, I do.

Throughout my infancy and childhood, I was often ill. As a baby, constant colic and gastric reflux were the main issues. I developed chickenpox at 9 months old, then asthma, tonsillitis… and following the tonsillitis, strep throat and scarlet fever. I was constantly on penicillin for my tonsils. It was one bout of tonsillitis after another, until the surgeons finally decided to operate in 1992, when I was 8 years old, after I came off a 6 month course of penicillin and managed to get sick again in a matter of days.

Surgery was scheduled for Monday 19th October, 1992.I don’t remember a great deal about this period of my life. A lot of that time has been filled in by mum and dad. Mum remembers me wanting drink after drink after drink on the night before the surgery, and put it down to the fact that I knew I wasn’t able to drink after midnight, making up for the fluids I would miss… perfectly reasonable in the mind of an 8 year old. I was still complaining of thirst the next morning when we arrived at Geelong Hospital, at 7am. Mum mentioned my thirst to a nurse, asking could I have some water, or even ice to wet my throat, but the answer was no. Surgery was scheduled for 9am.

********************************

Surgery went off without a hitch. It was only when I was taken back to the ward that anyone started Kit's Story.to pick up that something might be wrong. All the other children going back to pediatrics after their tonsillectomy were doing one of two things: sleeping, or quietly whimpering. Not me. Showing the attitude that people who know me would probably expect nowadays, I was standing on the trolley, shouting at the orderlies to “Take me back to the bloody theatre and put my bloody tonsils back in!”… Yes, shouting. No mean feat for someone after an operation on their throat, no matter what age. Apparently, I didn’t believe anyone who had warned me that the surgery would hurt.

I recall that night, asking the nurse for a glass of milk, and my disgust when she brought me orange juice… it burned like nothing else. I also remember copious amounts of ice-cream, boiled sweets, lucozade and flat sprite.  Over the next two days, I lost 6 kilograms, or 13.2 lbs. It was noted on multiple occasions, by doctors and nurses alike, that I was “dehydrated although drinking excessively”, as was my excessive urinary output... I was unable to walk from my hospital bed to the toilet, a distance of less than 15 meters (49 ft) without assistance… yet I was discharged, and no tests had been carried out.

The next day, Thursday 22nd October, I was a very sick little girl. By this stage, I had lost a total of 9kgs (19.85 lbs), and looked as gaunt and white as a ghost. Dad rushed me back to the hospital on the Thursday afternoon, and was told at first that I was merely sleeping. Of course, he argued this. He knew me better than that. The doctor, I still believe, was arrogant, and hated that a parent dared to disagree with him. He refused to do blood glucose or urinary ketone tests. By the time a student nurse went behind his back and took a urine sample, I was in a coma. The ketodiastix stick showed black for both ketones and glucose… Massive levels, and an almost definitive diagnosis of diabetes. Within minutes, blood was sent to the lab, and an insulin infusion was running at a rapid rate. Still now, nearly 15 years later, we don’t know exactly what my glucose level was at that first test. It was too high to read.It was at this point that my parents were given the news that I was diabetic, and in a coma. As if that wasn’t enough, they were informed that I had massive brain swelling, and was expected to have a stroke at any moment. They were told to kiss me, and to say goodbye, to notify the family that I wasn’t expected to pull through… that, in fact, it would be some kind of miracle were I to survive the next hour. We got our miracle. Not only did I survive the next hour, but I survived the night. Enter my pediatrician, and close family friend, Dr Jenner. It was he who had the devastating task of informing his friends that, had they not brought me into hospital when they did, that I would never have survived. Mum recalls saying to him “are you telling me… I would have put my little girl to bed tonight, and she wouldn’t have woken in the morning?” His silence spoke volumes, and it was mum’s turn to start vomiting… through fear, shock, and utter disbelief.

I was still managing to fight the next morning, despite the predictions of the doctors. By this stage, they had changed their outlook to something slightly more positive… “She still has excessive brain swelling, and we are still expecting a massive stroke at any moment… IF she wakes up, she will have brain damage… she will never walk or talk again, and will be in a wheelchair for life…” The doctors were wrong.

Saturday morning, mum woke at around 6am to what she still swears is the sweetest sound she has ever heard… my voice, calling “mummy”. She cried for hours, knowing that her little girl was a fighter, and was going to beat this thing.

I was in hospital for 3 weeks. I was given my first hypo during that time, so that I could experience the sensation in a controlled environment. I remember feeling as though I was eating all day. I still felt so ill that it would take me over an hour and a half to eat breakfast. As they cleared breakfast, they brought in morning tea, then lunch… it was a constant cycle of food, clear, food.

Within a week of diagnosis, I was doing my own insulin and blood glucose tests. Of course, I was also testing whichever nurse happened to be doing my blood glucose at the time… Enter Paul. Paul was a student nurse, 21 years old. After cajoling and working to convince him that a test wasn’t that painful, I managed to get his sample… 383, and high ketones when we convinced him that he needed some urinalysis too. Within a couple of hours, he was sitting beside me, proudly showing off his tummy… the site of his very first insulin shot.

I’m no longer in contact with Paul, but I do think of him often. I know he graduated back in 1993… 14 years ago now, and I pray that he is well. He was 21 then, so I can only guess that he must be married with children of his own by now.

Diabetes hasn’t gone away. It never will, no matter how many times, or how fervently I pray that it would. But I have realised…  I have diabetes. It doesn’t have me. It has changed my life. At times, it dictates the way that certain things have to be done.

But I can’t and won’t let it control me, my life, or my thoughts. 

I am me, a person who has Diabetes.  Diabetes does not have me.

Editor's Note:  For more about Kit's story, visit her blog, Sweet-Relief.

June 20, 2007

Finding Hope - Kathy's Story

Kathy's Story 

My daughter M was diagnosed on Monday April 5, 2004.  It was the first day of spring break and we were camping at a local lake, within about 40 miles of the house.  I had gone into work that Monday for a couple of hours, mostly to call the pediatrician for an appointment because we suspected diabetes.  M was 6 years old and had been drinking a lot of water and having to pee quite often.  Her cousin and uncle have type 1 diabetes so we were aware of the signs and had our suspicions.  Of course the doctor told me to bring her in, so I went to the camp ground rounded her up and took her in.  Kathy's Story

Once we got there they checked her urine for ketones.  In hindsight it seems a bit strange to check that first, but frankly I just don’t think they knew where a meter was.  She was off the chart, so far off the chart that my first thought was that she didn’t have diabetes!  When I realized I was misreading the stick my hopes were dashed.  I really knew better though.  They found a meter and some strips and her blood sugar tested at about 250.  The pediatrician called the pediatric endo and since M’s BG wasn’t extremely high, they let us go home (to the campground) and we made an appointment to see the pediatric endo the next day. 

Once the whole family arrived the next day at the pediatric endo’s office, they confirmed that she had diabetes and we pretty much hung out in their office for most of the day, crying and having our worst fears allayed.  Steel Magnolia’s was haunting my every thought.  I wanted to know if she was going to be able to have babies.  I was scared to death of long term complications; would she go blind, would her limbs be at risk?  We were told that she could lead a normal life and that complications could be avoided with good control.  What about all this time that we didn’t know she had diabetes and she had been running high, had we damaged her?   The ped-endo reassured us that there was no evidence that kids running high at a young age caused any permanent damage.

After hanging out and talking for quite some time, they let us run out to the snack shack outside the office building and run around a bit and then after having a snack and returning they tested her and she was over 500.  They gave her her first injection there in the office and we went home to take showers and decompress.  M, after running high for weeks, felt really “low” after that first dose of insulin kicked in.  We didn’t know at the time that that was what was going on, we just knew that she was crashing and it was a bit of a panic.  She didn’t actually test low, it was just her body reacting to the insulin and coming down so quickly that made her feel low.  Of course we called the doctor’s office in a panic, and they told us to go ahead and treat it like it was a low, so we gave her some juice, and then she took a nap.   After awhile we went back to the campground and told our friends that we were camping with that M had diabetes.  We went back to the doctor’s office the next day to learn more, and then one more day after that.  Thankfully we never did have to spend any time in the hospital.  We learned how to count carbs and to give injections in the ped-endo’s office.  Our appointments were then stretched out to once a week, then once a month, then every three months.

Even though M was honeymooning we were able to get approval for a pump because she was so sensitive to insulin and her BG’s during the night rose so high but then dropped to normal right before getting up.  We couldn’t fine tune that with injections so we were able to get approval for a pump after being diagnosed for just a few months.  As soon as we got the pump and were doing basal tests and determining carb ratios, etc, she quit honeymooning.  It was so frustrating, we couldn’t figure out what was going on for the longest time, and then we (the team) realized that she was using more than twice the amount of insulin than she had been using when we first got the pump, so we quit beating ourselves up and finally started to get a handle on things.  We were on the pump before she started school that fall.

Her attitude is amazing.  She has taken this whole thing in stride and has only complained once, when she was sick early on.  She had a stomach bug of some sort and was throwing up and I was hovering, almost panicked, because I knew that her blood sugar could go high when she was sick so I couldn’t forgo the insulin, even if she couldn’t eat.  So I was forcing her to drink sips of regular (full sugar) flat 7-up, or Gatorade, and it was making her throw up, but she’d had her shot and I was so afraid that she’d go low, and she told me that it wasn’t fair that she had diabetes and was sick.  We cried.  It wasn’t fair. 

She tests in class at school and boluses with her pump without missing a beat.  She even has her friends push the buttons on it to deliver the insulin.  She does get embarrassed around kids she doesn’t know, in new situations, to test and bolus in front of them.  Kids tend to stare and whisper.  But after the first week or two of being with new kids in class or on a new soccer team or softball team, they all get used to it and it’s no big deal.  For the most part things go pretty smoothly, but every once in a while you’ll get a well meaning but ignorant person who will do or say something that is hurtful.  We try to educate folks, but sometimes people don’t want to hear it.

My biggest concern these days is for her mental health.  I’m scared of the teenage rebellious years, of her getting burnt out and not wanting to deal with it any more, of drinking.  She has always been responsible, a teacher’s pet, likes the rules and follows them kind of kid.  Don’t get me wrong she has opinions and isn’t afraid to voice them, but she’s a good, happy kid.  I just want her to stay that way. 

June 17, 2007

It Could Have Been Worse - Tom's Story

Tom's Story

Tom's Story. 

On the day I was diagnosed at 15 years old, I was checked into the hospital. I had been experiencing the typical symptoms of thirst, weight loss and going to the bathroom a lot. I shared the room with a 17 year old boy undergoing chemotherapy for leukemia. Down the hall during my 2 day stay was a boy who blew his hand off with a firecracker. My mom told me that in a sense she was relieved by my diagnosis because she was worried it could have been worse. She feared that the unexplained weight loss could have been due to something worse. Somewhere on the back of my mind I remember agreeing with her. Seeing people close to my age going through struggles that I thought were much worse than what I was going through helped give me some perspective as I began my daily battle with this disease. I think my mother’s words best describe my attitude towards diabetes, “it could have been worse”.

My positive attitude towards my diabetes has usually helped me, but for a time it got a little dangerous. I tested just enough to get by and gradually my weight and my A1c started to creep up. I had some dangerous lows including an embarrassing situation at work that could have been avoided if I had been more open about my diabetes. At this time last year, my A1c was up to 7.9 and my weight was up around 210 pounds. I was getting by through the highs and lows, but I knew that I could do so much better. I knew that if I ate better and became more active, I would be improving my quality of life, so I decided to change.

I started by switching doctors. My doctor wasn’t doing a bad job, but I felt like I needed a fresh start and needed to take a more aggressive approach. I knew that I needed to view my diabetes as more than just an inconvenience and recognize it as a part of me that wasn’t about to go away that had to be monitored closely.

I began seriously watching what I ate – counting carbs and cutting way back on things like potatoes, pasta and rice. I began testing more frequently – even after meals. My goal was to finally start on the pump after years of putting it off. Gradually I started to feel and look better. The weight started melting away and my energy started to increase. I started going to the gym religiously four times a week. I hadn’t realized it, but for the previous few years by doing just enough to get by I had been selling myself short. That wasn’t good enough.

In May, I had my three month endo appointment. My weight was down to 178 and my A1c came back at 5.8. I have become more open about my condition, not being embarrassed to wear a medical identification necklace. I even participated in a taping of a roundtable discussion for DLIFE television. My diabetes is not always at the front of my mind, but it is always there somewhere and being willing to confront it has changed my life for the better. I have energy that I haven’t had in years to do things like yard work or bring our dogs for a walk.

I am 30 now. My wife and I have been married for 5 years and would like to have children soon. Sometimes I think that my diabetes has prepared me better than others for the challenges ahead because I have learned to always look at the big picture and understand about how the choices I make now can impact me down the road. I look forward to living as healthy a life as possible and watching my children grow up.

Soon I will have lived longer with diabetes than without it. Do I like it? Of course not. It sucks that I have to test my blood sugar 10 times a day to make sure my control is good. It sucks that I almost completely avoid foods like pasta and pizza and that going for a beer with my friends throws my blood sugar all out of whack. As much as it sucks though, I’ll always remember that it could have been worse. I don’t know what happened to the boy who had leukemia or the boy who lost his hand. I hope that like me, they came out ok.

June 13, 2007

Perfectly Beautiful

Perfectly Beautiful - Heidi's Story 

Cloud nine is how I describe my first pregnancy – I was 34 and it was a perfectly beautiful 9 months – I did yoga all the time to help open my hips for delivery.  The yoga paid off in labor – my hips were nice and open and made for a perfectly beautiful experience. 

The months to follow were, again, a perfectly beautiful experience – my beautiful baby daughter was the worlds’ best sleeper, ever.  As a first time mom, I never missed a night’s sleep – thanks to my baby girl.  She was never sick – not even a cold.  And then when she was 11 months old – she got her first flu?  Well, I thought it was the flu, it was Sunday evening and she threw up after I breast fed her – this was highly unusual for her.  Oh well, we moved on to Monday and she seemed a bit lethargic but she still was eating and drinking plenty, I mean plenty.  The days that followed were odd, to say the least.  I called her pediatrician on Tuesday to find out if we should come in for an appointment, they were not concerned as her symptoms mirrored a flu that was going around – actually they even told me, “that is great she has no fever and she is drinking so much, keep up with the fluids.” – clearly the fluids were not a problem.  By Thursday, her “weird breathing from her mouth – even though her nose is not congested” was getting too strange and my husband and I took her in to see her pediatrician.

It was all a blur from then on – we saw the doctor, they did a bHeidi's Storylood sugar check – 360something (at the time I was clueless regarding a normal blood sugar number) – we were instructed to drive straight to the local ER and that we would be transported to the Children’s’ Hospital from there.  Once transported to the Children’s Hospital, we were in the Pediatric Intensive Care Unit for 4 days - our perfectly beautiful 11 month old baby daughter was in Diabetic Keto Acidosis, she was diagnosed with Type 1 Diabetes.  At the time I was unaware of the craziness that accompanies such a diagnosis. 

Before that day in the ICU, I did not know anyone with diabetes and was clueless to the daily (more like hourly) impact it would have on our lives and the quiet invasion that would occupy every single snack and meal time.  I had no idea that I would begin to routinely wake up every three hours to do a blood sugar check in the night.  The idea of envying other mother’s as they merrily fed cheerios and milk as snacks to their toddlers with no thought of blood glucose numbers or how long until the insulin peaks – was not hitting home yet.  I was unaware that I would be having cholesterol screenings and routine blood panels on my toddler.  However unaware I may have been and still can be at times nothing is worse than knowing that this is not my disease and that someday my daughter will take it away from me.  It will no longer be ours to share and she will be alone with it.  I loathe that day because I never want her to have to deal with this craziness, alone.

Until then, we share Type 1 Diabetes, me and my perfectly beautiful daughter; she still is and always will be my perfectly beautiful daughter (give or take a few daily injections of insulin).  She now has a younger brother that just turned one and she is a great big sister.  She loves her gymnastics classes and swim lessons.  We take nature walks everyday to try and catch that one monarch butterfly that escapes every time we bring the net around.  She is a great eater, we drink lots of water, ‘sof” juice (97.2% H2O and 2.8% fruit juice), lots of fruits and veggies however nothing makes her happier than ice cream – oh how she loves her ice cream.  And, yes, she can have ice cream.  I have learned so much about Type 1 diabetes and I have learned so much about life from my perfectly beautiful daughter.  I have come to realize that my daughter will never know anything different in her life then living with type 1 diabetes – until her perfectly beautiful cure.      

June 08, 2007

Huh? Les's Story

Huh? I Have Diabetes? I Don’t Understand. -  Les's Story.

Diagnosis #1
Wednesday, February 1, 2006 - I spend most of day traveling for business, having a grand time with my travel buddies and learning lots about a new software system that we  were exploring (self-disclosure #1 - I'm a geek. OK, I guess this submission is really self-disclosure #1, so we'll make the geek thing #2).

I get back to work find a message on my home machine from my gynecologist, who I had sHuh?  Diabetes?  Whaaa???een the day before for my annual checkup. (Self-disclosure #3 - that's a lie. It's supposed to be "annual" but I hate going to the doctor, so it had probably been...let's say...a few years.)  The message says to call them immediately because of some lab results. Turns out the same message had been at my home and on my cell phone.

I call the lab nurse, who says that my blood glucose was 283 and it was very high. She said I needed to see my primary care doctor as soon as possible...that same day if possible.

I almost blew off this advice. I was sure that the fact that I had 3 or 4 glasses of wine the night before my labs were taken was the culprit of this strange lab result. (Heh, heh, heh...the joke's on me...alcohol usually LOWERS your blood sugar, I am surprised to learn much later!)

Keep in mind that the lab nurse never said the "D" word, and that I not once made the connection  myself.  "Blood glucose" was just some medical term and I was certain that this was just a simple anomoly.

However, I  made an appointment for the very next day despite the fact it was a total pain in the ass and interfered with my work schedule.

Wednesday, February 2, 2006 - I go the the gyno lab and pick up my lab results, which I then hand deliver to my primary care physician's office. The nurse then stabs my finger with this monster sized needle thing (which I now know is a safety lancet) and collects the blood on a test strip. The doctor comes into see me and says that he's pretty sure I have diabetes.

What?

I don't understand.

What does that mean? That doesn't make sense. I am literally confused at this point because what he has said makes no sense.

The doc says that my labs along with the BG test they just performed are good enough to officially diagnose me with type 2 diabetes. He says they will run another test (turns out to be an A1C) and to come back in a few days when those results are back.

Diabetes?

Huh?

I still don't get it.

I go home. He says, "How was your doctor's appointment? What did they say?" I respond "I have diabetes" and then I burst into tears.

Ah...now I'm getting it.

Diagnosis #2
April 30, 2007 - It's been more than a year since my type 2 diagnosis. I've moved on to a diabetes clinic for treatment. I've taken at various times - metformin, avandia, and glymiperide. I participated in a clinical drug trial for liraglutide, which is a sister drug to byetta.  None of this stuff is having much of an effect. I quit the trial because of awful side effects. So now it is time to develop a new treatment plan.

My endo says, "I think you have type 1 diabetes. Let's run the anti-body test." Sure enough, the anti-bodies are there, and I've now been re-diagnosed as type 1.

Huh?

What does that mean? That doesn't make sense. I am literally confused at this point because what he has said makes no sense.

The doc prescribes insulin, and off I go to explore this whole new world.

Coping
My second diagnosis was in some ways a relief. It explained while oral meds were not working. Insulin actually has improved my life.

But, man oh man...what a shock. It took a couple weeks for it to sink in. I went through the whole process again of wrapping my brain around the idea that I had type 1.

As a result, I started my own diabetes blog called Type-Cast. It has been incredibly helpful on a number of fronts. As a form of self-expression, it helps me not completely wear out family and friends with my constant chatter about my condition. Having others post supportive comments is just that – extremely supportive, despite the fact that I don’t know most of these people in cyberspace. And I have become quite the student of the disease, with others’ d-blogs serving as my textbooks.

One big surprise – the whole “type 1 versus type 2” tension that is out there among PWD. Wow. Not quite sure what to make of it yet.

Here’s self-disclosure #4. I am secretly (guess not so secret now) glad that I am type 1 and not type 2. It means it is not my fault, so I don’t have to feel guilty. I’ve lost 30 pounds post-Dx (and also thanks to an ugly gall bladder situation) and so it is fun to have a brand new body. Nothing like feeling like hot stuff when you are 43!

In the mean time, I’m still figuring it all out – emotionally, cognitively, logistically. I really appreciate the opportunity to get my story down for myself.  Thanks for prompting all of us in d-blog land to express ourselves!

Editor's Note:  Visit Les at her blog, Type-Cast, for more on her diabetes experiences. 

June 06, 2007

Troy's Story

I'm a Type 1, diagnosed nearly 22 years ago at the age of eighteen.

There was no history of diabetes on either side of my family at that time.  I was working part-time at a gas station and started to notice my vision getting worse, drinking obscene amounts of liquid and losing weight.  I self diagnosed myself with one of those medical books that my parents had in the basement prior to seeing the local doctor and spending a week in the hospital.

Since that time, I made myself a promise that in fifteen years I would be cured and not require the constant management of this disease. Unfortunately, that deadline has come and past.  The progress made since 1985 in my regiment include:

1.  Improving meters.

2.  Changing mixing and injecting from the syringe, then to 'the pen' and just recently to the pump.  

3.  Adding several new 'cures' that still require years of testing to tease us with a false sense of hope.

Now to get back to my story...

After high school, I attended College and focused my intentions on becoming a police officer.  I graduated with good marks and kept physical fit through the school program and continued to play hockey. After several attempts, I was unable to land a career with a handful of police agencies.  Generally, I did well on the fitness aspect and initial interviews. I still seem to think that when questioned about my diabetes in the final interview stages, it became an issue that became the roadblock to progressing in that field.

Currently...

I work in the Nuclear Industry with the Fire Protection group.  I took College courses and progressed from firefighter ranks to management level.  This field of work directed me to become involved within the community as a firefighter.  These opportunities also allowed for participation in the Firefighter Combat Challenge at the National and World Levels.

I'm married (Debbie) with two children (Sarah/Jacob) and two cats (Isabelle/Borris).  I recently switched to a pump with the continuous monitoring system (but don't use the monitoring system because of insurance coverage for the sensors).  For 21 years, I've managed to keep my diabetes a secret, but feel I have 'come out of the closet' when I switched to the pump.  My children still do not know of my diabetes.   

My little guy is unknowingly involved with the TRIGR Study (Trial to Reduce Insulin-Dependant Diabetes in the Genetically at Risk. TRIGR is the first diabetes trial that will assess the relationship of infant formula consumption to the likelihood of developing type 1 diabetes in genetically susceptible infants). I don't let having diabetes hold me back from doing what I want to do. I do get tired of the management, and never getting a 'vacation' from this disease.  When I'm struggling, I have my wife for support and also the Charles H Best Clinic that is in my area.  I've recently started reading diabetes blogs, but have Six Until Me and Diabetes Mine saved as favorites.


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