I was a chunky 10 year old and when I started losing weight (about 50 pounds in less than a month) my mom decided to take me to the dr in our small town. I had all the classic symptoms (but didn’t know it at the time) I wasn’t eating nothing drinking like crazy just to go to the bathroom many times after I drank anything. I was spending the Summer with my g-father who was getting all this drinking, going to the restroom, and total lack of energy going on and for like 2 weeks he kept telling my mom something was wrong. Anyway she took me to the small town dr (this was in 1973) and as he heard what was going on he told my mother to take me immedently to the small town hospital where they could draw some blood from me it sounded like diabetes to him. My mother took me to the hospital and I went into the lab where they drew a tube of blood from me then her, my g-father & I went for a day of grocery shopping. My dad was buliding the “red Room” and stayed at home after a full day of shopping in the small town my mother, g-father & I came in and my mother dropped my g-father off at his house. We walked into the house and my dad was on a latter as he was coming down it he told my mother that the drs office had called. My mom returned the call and was told to get me to the bigger town of Jackson where I would see another dr. Turned out this DR was a peditrician. We rode for an hour to get to Jackson I remember it like it was yesterday I had a suitcase with all the 70’s hippy stuff on it and I sat in the back set and cried my eyes out. My 1st cousin had Type 1 and she was going to have to take shots for the rest of her life. Was I going to have to do that too??? Anyway we got to the peditrian and he put me in the Jackson Hospital For 3 weeks (now this WAS 38 years ago) The place only real sick ppl went to. Oh I don’t even want to think about those times after the inital diagoses. I thought I didn’t have long to live but if it wasn’t for my cousin helping me through every step I don’t know if I would have been here today. My mom stayed night and day with me in the hospital. Those 2 ppl really helped me through the worse time in my 10 years of life!
I developed pancreatitis in 2006 at 57 years old which left me with 10% of my pancreas that my own body devoured. Needless to say I’ve been a Type 1 diabetic ever since. It’s a never ending struggle to balance my BG numbers… nothing can take the place of a pancreas but I’m very grateful to Insulet for my OmniPod pump. It creates a more normal existence without having to inject myself several times a day like before I received it.
I know it must be so very hard for people who have had diabetes since childhood… I could not even imagine the difficulties and if this had to happen to me I feel blessed it was later on in life so the majority of my life I lived healthy. They never found the cause of my pancreatitis, I believe they call it “idiopathic” which also means I could develop it again which would probably kill me so I live each day like it was my last. I try to be happy and enjoy life as much as I can.
So that’s my story. 
Awesome story! Way cool mom!
Thanks to everyone who has posted a reply. I have thought about my story frequently throughout my life and it is very interesting to see how so many have had a similar experience. I was daignosed in October, 1983 at age 12. I remember that it was October because I was in the hospital during Halloween. I remeber being so angry about missing out and saying, “What do you mean I can’t eat piles of candy any more!” Those were the days when kids went door to door for hours with a pillow case and came home without an inch to fit another piece of candy in the sack.
Like most everyone else I also lost a lot of weight almost overnight, which frustrates me today because I couldn’t loose 5 pounds if I had too. Before I was diagnosed I was carrying around an empty milk carton that I would fill with water and drain it almost as fast as the water went in and I was in the bathroom every 15 minutes or so. I remember my mom taking me to the emergency room and hearing the doctor tell my mom that my blood sugar was over 700 and that they wanted to start an IV. Suddenly my mom and the doctor were shocked because even though I had been lethargic I instantly turned into the worst best 12 year old cage fighter when they pulled out that IV needle. To this day I still fight my doctor every time he pulls out that lab slip, but I tend to use my vocabulary skills instead of my muscles these days.
I also remember my mom talking with everyone in the family because the doctors told her that diabetes was something that was inherited. I remember wondering “what’s wrong with me” because nobody in my family had a history of diabetes. I got over that in time and I have not questioned or been angry in many years. I believe that things that challenge you also help shape your life and I have 2 beautiful children and the worlds greatest wife so I wouldn’t change my life in any way. I am also happy for the technology that has come along over the years. My 5 second meter and insulin pump is certainly preferable over peeing on a strip,checking it against the side of the bottle, mix two different bottles of insulin and taking a shot. To those that are working towards a cure, Thank you and keep up the great work!
Diabetes is a disease? No, it is a challenge. Stay strong!
Love your Mike and God Bless!!
I love your humour and positive attitude! It is frustrating at times, I know, but I just look at it and think that ultimately it makes me a stronger person! I have learned great tips on how to get the blood sugars down quicker when they are high - and I know that eventually they will go down! If I have been high and get a crashing low I welcome the low with open arms! “At least something is working”, and when I have a low and I am sweating so hard that I look as though I have come out of a shower, I think “I quite like this illness! At least the treatment can be quite pleasant!!”
I am so glad that I was adult onset (though having had the symptoms for 10 years - ie loss of weight, thirst, peeing etc and being ignored and worst still having the accusations that I had been drinking when I knew I had not) because my first word when I was finally diagnosed was not polite, and I do not usually swear! But, I am a needle phobic! When I read of the rigmarol people had to go through before the modern needles and meters I am thankful that I did not have it back then. I would never have survived! What frustrates me is that my doctors in particular do not seem to get it right with the prescriptions! They are always forgetting something! Yesterday they prescribed all my meds - bar insulin - and then forgot to put the needles on the prescription!!! Aaagh! So I have to go back today and ask for ANOTHER prescription!
Not all the modern stuff is as good for me as many doctors here in the UK are convinced that the “human” insulins are far superior and cannot seem to get it round their heads that some people might be allergic to it and would do better on the old insulins! I had a terrible fight with them to go on to pork - excuses being “you might be allergic to it!” and “it is not available in this country!” or, “Nobody else in this town is on it” (wrong on all count!) I fnally managed to get on pork insulin and I am not allergic to it, it is smoother (for me) than the artificial insulins - down from 8 or 9 hypos a day to either none, or two if I am unlucky!) Doctors do NOT know everything, however they might like to think they do! And my doctor is honest, but frustrating. When I go in to see her she just says she is not going to discuss diabetes with me. End of!
Holy cow, kphil06! It really is a miracle that you're still alive, given the total lack of education you received about your diagnosis. Huge cudos to you and your support system for "figuring it out" (in the words of that irresponsible endo).
How funny that you and I both remember the stuffed animals we got in the hospital, and how much we loved them, more than almost anything else. Note to self: if I ever visit a kid in the hospital, take a stuffed animal
What a harrowing story, latvianchick. I think it’s amazing that you can tell it with a sense of humor, especially since it was pretty recent! How’s your health now?
Fellow east-coaster? I’m from PA, but I’ve lived in CA for 15 years, and I don’t think I’ve seen a DQ in all that time. Have you figured out how much insulin you need to cover a banana split?
Oh, the hat wasn't so bad (although, of course, the technology was). We got a lot of laughs out of it :)
It's interesting that you mention the difference in developing diabetes at a very young age, vs. later in life. I've actually always been grateful that I don't remember life before my diagnosis because at least I don't have a time to look back on and long for, and I didn't have to go through a painful transition. Aaahhh, human perspective :)
So, are you afraid of needles? I ask because after 33 years with diabetes I’m still afraid of them, and it’s always perplexed me (and anyone else I tell). I feel silly that I deal with them all the time, but still have to look away, hum a tune, psych myself up etc. to get a blood draw in the lab.
I’m afraid of needles but only when they’re not in my own hands :-). I’m fine if I’m the one doing the poking.
I’m told that this is not a true needle phobia - if it were then I’d be afraid of needles in my own hand too. So it must be more of a a “I’m the needle control freak I have to hold all the needles” thing.
Watch the adrenaline-to-the-heart sequence in Pulp Fiction closely sometime. You never actually see the needle break the skin but you swear you saw it. That’s brilliant, freaky brilliant moviemaking.
Yep! I am - big time! Unfortunately I have two conditions (apart from diabetes) that require needles - big ones! One in my hip joint and another type in my neck joints and I am bricking myself! Why do I end up having something that I should need such big injections!!???
I have just about managed to cope with the blood tests (more needles!) because I use a numbing cream on the veins about an hour before the blood test - but as far as I can tell, it does nothing for anything else!
My three year official type 1 diagnosis will be on November 13th of this year.
In April 2008, I went in to the doctor for a bladder infection and received a phone call that I needed to come back in for blood tests as there was sugar present in my urine. I went back and my then doctor ran a fasting blood sugar and an A1C. I received the results and my A1C was 7.2 and my fasting BG was around 200. I was told I had type 2 diabetes and to go and buy a book on it. Gasp! Not kidding. Keep in mind that I’m 5’7" and was just under 120 lbs at that time. I was pretty shocked and argued that I live a very healthy lifestyle and there was not much I could change in my diet. I admitted I could exercise more and his response was, “even 5lbs can make a difference.” I was 29 at that time and a size 2. He
didn’t put me on any medication and just sent me on my way.
By the following Monday morning I had an appointment with another doctor who given my healthy eating habits and weight, didn’t think I had type 2, but a glucose intolerance. He admitted that would be rare at my age, but it would be best to just watch my numbers and come in monthly for tests. I pretty much starved myself until late October and somehow kept my numbers in the 200 range with my A1C’s in the 7’s. With the exception of salads with no dressing and the occasional vegetable, I did not eat a single carbohydrate, but I was feeling progressively worse. By that point, I was just about 100 lbs and a walking skeleton. I couldn’t see to drive, my vision was so blurred. I had to quit my job in television news as I could no longer function. I was finishing my last semester in school and was planning my December wedding which at that point, I wasn’t sure I was going to make as I was feeling that horrible. I was drinking constantly and urinating at least 20 times a day.
On a particular Friday afternoon, while visiting my parents, I was so ill, lethargic and out of it that they called an ambulance. I refused to go with the ambulance as I was terrified after all of these months of torture, I didn’t think anyone
could help me and I didn’t want to be put through a hospital visit. The paramedic told me that I needed to seek medical attention and if I wouldn’t go with them, that was fine, but he insisted they follow my parents and I to my doctors office. It wasn’t a smart choice on my part, but was I was so combative and miserable, no one could talk sense into me. When we arrived at my physicians office, as luck would have it, my doctor was on vacation. I was seen by another doctor, a woman, to who this day, I cannot believe is licensed to practice medicine. My sugar was over 300 and she said, “it’s a shame, but there are so many people walking around with blood sugars in the 200 and 300’s and most of them don’t
even know it.” I looked like a walking corpse. I live in Hawaii where the incidence of type 2 is very high and type 1 very low, but how could a trained medical professional not spot the symptoms. I guess the thought because I was 29, type 1 wasn’t on the table. After that experience, much to the dismay of my parents and fiancé, I just went home and cried. They tried to put me in the car and take me to the ER, but I was screaming and crying and refused to go. Ridiculous behavior and totally out of character for me, but with a sugar of over 300, I was certainly not thinking clearly.
My mother had been telling me for months that I needed to see an endocrinologist, but the wait was 6 months so I couldn’t get in. I was at my wits end, and by that point, I no faith at all in the medical system, as I knew I had type 1 and no one listened to me. I had done five months of research and would cry to my fiancé that I had type 1 diabetes, and could not understand why no one would believe me. I remembered reading a book by a famous local naturopathic
doctor who specializes in autoimmune diseases. I immediately called her office and begged to be seen. The wait list was well over six months, but I was in such desperate shape. I faxed over my medical records and she personally called me and agreed to see me the next day, which was Saturday.
She walked into the exam room, took one look at me, and said, “You do not have type 2 diabetes. You have autoimmune Type 1. Your body is starving to death and you need to get on insulin immediately.” I credit this woman to saving my life. I finally got the confirmation that I needed. From a naturopathic doctor.
On Monday morning, I got a call from my primary care physician asking me to come in. Clearly, he received the notes from the doctor who sent me home with a blood sugar of three hundred. When I arrived at his office, he said, I suspect that it’s Type 1. I said, yes, I know, a naturopath diagnosed me on Saturday. He looked a bit miffed. He ran a pancreatic function test and an antibody test. My pancreatic function levels were undetectable and I was antibody positive for type 1. I didn’t even know that there was an antibody test. My pancreatic function was tested the April prior and it was low, but in five months, my numbers were undectable.
Finally the diagnosis. I was sad, but just relieved to have confirmed what I already knew. I was sent to an endocrinologist the following day and was put on insulin and finally started feeling back to normal. Not sure if anything having to do with type 1 can be called normal, but I was feeling better. I made it to my wedding. Lol. But was unable to graduate on time. I have learned with type 1, you have to forgive yourself for things. I have always been very hard on myself and this illness has taught me, I can’t be. No matter how hard I try, my numbers will never be perfect. My A1c is in the 6’s and I’m fine with that. I do the best that I can and my endo says I’m doing a good job. I’m not where I want to be professionally speaking. I never returned to t.v. News as I haven’t been able to land a position, but I have high hopes that one day I will. Until then, it’s just one day at a time.
Wow... another totally harrowing story. I think I've been really lucky with medical care, because I've never had to convince a doctor of what's ailing me! It's crazy how many folks on tudiabetes seem to have had that same problem. I'm so glad you're doing well now (A1C in the 6s is fantastic, in my opinion)!
In early 1995, I had two back-to-back colds and never really recovered. I was 35 years old and a life-long athlete. I was losing weight, eating a lot, peeing a lot, and was extraordinarily fatigued. I had hideous leg cramps that kept me awake at night. I tried to make an appointment with my doctor and the earliest appointment they would give me was one month out. I kept calling to see if I could be fit in, if there was a cancellation, to no avail. Finally, my weight loss was so extreme (I was losing 3 pounds a day at that point) that a co-worker insisted I get help immediately. I went to my doctor without an appointment, and my doctor’s nurse told me I had diabetes and told me about the progress in the treatment of Type 1 diabetes. When my blood test results came in, 619 mg/dl, I was told to go to the hospital immediately (in Walnut Creek, California, USA). It was there that my problems with misdiagnosis began.
After hydration, I was given IV insulin. My blood sugar came down so quickly (I am and always have been extremely insulin sensitive) that they had to give me IV glucose. I briefly went into DKA in the hospital. I was seen by an endocrinologist who was a medical school professor at University of California San Francisco. Although he said I was in the “gray area” of diabetes type, in my chart he put NIDDM (non insulin dependent diabetes mellitus, now called Type 2 diabetes), took me off of exogenous insulin, and discharged me from the hospital with a prescription for glyburide. My blood sugar was 319 mg/dl when I was discharged from the hospital. I was sent to Type 2 diabetes education classes. The nutritionist I saw at the John Muir Hospital diabetes center said that glyburide didn’t usually work on someone as thin as me, but she didn’t explain why not. I read everything I could about diabetes, and it was very clear that I didn’t fit the description for someone with Type 2 diabetes but that I did fit the description for Type 1 diabetes. I spoke with the endocrinologist about it. The glyburide had no effect and my blood sugar was extremely high. One week after I was hospitalized, I had an appointment with my endocrinologist and angrily confronted him and told him I believed I had been misdiagnosed. After some heated discussion, he agreed that in fact I did have Type 1 diabetes and he prescribed insulin therapy. I later confronted the CDE and nutritionist that I had seen during the week of misdiagnosis, and they basically said they knew I had Type 1 diabetes but wouldn’t disagree with the endocrinologist. I was upset that I had not been given appropriate treatment but thankful that it was only one week that I was misdiagnosed. Now, 16 years later, I have adapted to life with diabetes, but I am still working to get acknowledgement from the medical community about the prevalence of adult-onst Type 1 diabetes and the need for correct care. Here on TuD, I blog about misdiagnosis, for example Manifesto for the Misdiagnosed.
I suffer the same fear and occasionally, no oftenly cancel a doctor appointment because I didn’t/don’t want to go to the lab. I psych myself out each and every time I have to go and even after it is over I end up sitting in the car with my arms tighly crossed. I think the fear comes from being a child with diabetes back in the day when blood work was required anytime someone flipped on the lights. I remember being in the hospital and having the lab techs come in every 12 hours to draw blood. The fear of having to give blood was with me even at times when I was not in the hospital and haunts me to this day.
I really wish that all endocrinologists handling pediatric cases could understand the fear that young diabetics face. I think it is an involuntary reflex for endocrinologists to hand out a lab slip at the end of an appoinment. The really ironic part is that my doctor will tell me that my Hba1c is right where it needs to be but at the same time his involuntary hand is filling out that darn lab slip. I finally got my doctor to agree that if my levels were good he would give me a pass on the next visit. A small win but I certainly celebrate it.
Sorry for the long answer but the fact is I don’t like blood work or IV’s either. Insulin injections are no problem at all.
This has nothing to do with diabetes, but it has to do with drawing blood : I started to donate my pint of blood to the Red Cross , when I think I was 18 years of age , in the Netherlands …did this 36 times( until diagnosed ) …the idea /pain / etc./ etc. never bothered me …and I am the one , who has a very low pain threshold …ask my Hubby .