Hi, Ryan. I hope you post the trends and interesting points. We might award you extra credit for a list of the top 10 things we PWDs look for from our medical care providers 
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What were the circumstances that led to your initial diagnosis? What is your story?
here’s the big long story - - - i answered a question about my dealings with dka many months ago, so rather than write the whole story again, here it is:
my father had fallen off of the roof clearing leaves and had had surgery to repair his broken ankle. he did very well during the surgery and came home a few days afterward (in time for christmas:-). about 11:30 pm on the night of 2 january 06, my mom called me to say that my dad was very sick (“heartburn” he said), but he didn’t want to go to the hospital. i went over there, took him some tums, and sat down to talk to them. he was on the phone with the doctor chatting away when he dropped the phone. i called 911 and started cpr, but he didn’t make it.
i remember being extremely thirsty between the time i stopped cpr and the emts took over, but it had been really hard to do cpr on my dad as he was in a recliner and not a petite guy (6’2", 180).
we had followed the ambulance to the hospital, and when we left the hospital, i noticed that i felt every breath going into my lungs. of course, i blamed it on the “night air”. soon after we got back to my parents’ house, my sister jane came in. we all tried to go to bed, but i couldn’t sleep. i vomited what seemed like buckets, but i thought it was because my father had just died in front of me. when my other sister pat and her husband came in, they didn’t like the way i looked. they both tried to find a pulse on me, and my sister just found one that was thready. they insisted on taking me to the hospital and i am so glad they did.
my blood sugar was 560 and i was in dka. i also had an aspiration pneumonia (i had inhaled vomit into my lungs) and tako tsubo syndrome. apparently when papa went into cardiac arrest/respiratory distress, my system was flooded with adrenaline. it fried everything. tako tsubo syndrome is also called “broken heart syndrome” because it usually happens to post menopausal women who are grieving or under severe stress. i am considered a type 1 diabetic, although i would suspect that i was pretty close to being diabetic if not one already when this episode happened. i am thankful everday that i’m in houston with a cracker jack team of doctors who figured things out quickly. tako tsubo typically looks like a heart attack, but it is not. it is simply treated with beta blockers (praise be). i spent 8 days in the hospital - - - 6 in ccu (intubated, central line, the whole enchilada). not only was i dealing with the diagnosis of diabetes, but also the death of my father. i feel extremely lucky to still be here as i was told after i got out of the hospital that doctors had given me a 30% chance of surviving. my endo even told me that he had been called in as a “courtesy” because they didn’t expect me to be “living” with diabetes. -
How did you feel at first? Scared? Guilty? Ashamed?
i would say all of the above with a healthy dose of pissed-offed-ness. the worst thing i kept thinking is how diappointed my father would have been, but now i think he would be very proud. -
What kind of education or instructions were you given once you were diagnosed with Type 1 DM and by whom? (Nurse, Dietitian, Doctor?)
i had many lectures from the hospital staff (highly annoying people who had NO clue what it feels like to have iddm), and only one cda truly helped me by explaining how i COULD live a normal, healthy life with this stinky disease. the only carb counting class i had was one put on by medtronic, which may as well have been a sales call. -
What is your daily routine (monitoring, shots, etc) from the time you wake up to the time you go to sleep?
i wake up, test, and always eat breakfast
test 2 hours pp
test, eat lunch
test 2 hours pp
test before, during, and after exercise
test, eat dinner
test 2 hours pp
test before bed and eat a snack if my bg level is below 100 -
What are some situations that require you to change this routine? (Going out for drinks, traveling, work schedule, etc.)
weekends, snacking, parties, and sometimes travel (although i got a pump before i went to europe so that i wouldn’t really have to cope) -
What are you concerned most about regarding your health in the future?
the usual, although i do think that prevention is key -
How has living with Type 1 DM impacted your relationships with others (romantically, friendship, family, children, etc).
i’m amazed at how EVERYONE in my life has been so supportive of my new lifestyle. living with iddm has simply confirmed that my family, friends, and partner ROCK. -
How has insurance (and dealing with insurance companies) impacted your life, health and general outlook?
bleh. i love my insurance, but i haven’t always had such great coverage. it’s been tricky to sometimes try to figure out coverage, especially when the rules change overnight. -
Anything else you’d like to share.
you are asking the right questions! thank you. if you need more information, please email me at k_lilly at yahoo dot com
Thank you all for the great replies! Also, thank you to those who emailed me directly. All in all, very helpful.
This helped out a lot and my partner and I presented some interesting information to the group. We also shared the link to all your stories with the group.
Someone mentioned that it would be interesting to talk about what they teach us in med school regarding diabetes, nutrition, endocrinology, etc.
I may post something about that in a little over a week (the afternoon after our test is over).
Thanks again,
Ryan
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MY STORY: i was on vacation in cancun with my dad for his buisness trip. none of my clothes were seeming to fit and my dad had asked me if i was anorexic. i kept telling him no and that i just didnt feel good. on the last night of the trip was a dance and i couldnt even stand up straight so i asked my dad for the key to hotel room and i dont remember anything after that. i dont remember flying home or waiting a few days to get a doctors apt. i finally got in and the doctor kept telling my mom i was anorexic. at that time i weighed 106lbs when noramally at that time i had weighed 125lbs. she took my blood and i went back to my moms office. at that time she worked for an OBGYM. the doctor she worked for told my mom to take me down to the ER immediately. next thing i knew i had iv’s in me and was going througha bout 4 bags of fluids. i was so dehydrated. i was in ICU for 3 days and a regular room for 4 days. they wouldnt let me out of the hospital until i could give myself my insulin. its a scary feeling at first especially going 19years of your life being able to eat whatever you wanted whenever you wanted. but i adjusted and am still struggling till this day.
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i was scared out of my mind! my moms best friend had just passed away from diabetes the nov i before i got diagnosed in march. as soon as the doctor told me i looked at my mom and she was crying and i was crying. i didnt know what to think i thought that was the end and i was goingn to die. they later explained to me that i can live a long and healthy life if i just eat healthy and exercise and take my insulin.
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a dietician did come in and talk to my while i was in the hospital but i still to this day have no clue what she even told me. i was still groggy and not sure what was going on and so overwhelmed. i had later taken a class by a diabetic educator. i learned so much and they gave me so much information. its till interesting to go back and look at those books. i still learn something knew everytime.
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wake up CHECK/INSULIN. work lunch CHECK/INSULIN 2hrs later CHECK/INSULIN SOMETIMES. dinner CHECK/INSULIN 2hrs later CHECK/INSULIN SOMTIMES. bed CHECK/INSULIN
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i just turned 21 this past may so i definately had to change my routine when i drink. normally i just drink beer or liquor and diet coke. but rarely anything with sugar. i have to make sure when i get home to check bc my sugars are normally low after i drink. so those midnight jimmy johns runs always help ha
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my biggest concerns are well losing a limb, having to do dialysis, DYING! passing it onto my children. im scared everyday of my life. every cut i get. getting a cold. it just takes so long to heal and feel better. its quite annoying ha. one time my friend was giving me a piggy back ride and he tripped and fell and i flew off of his sholders. he got a huge scrape on his arm and i got a little cut on my sholder. his healed in like 2 weeks and my little cut was still not healed by then. it took about a month…
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its definatley impacted my relationship with my family. they are always asking me how my sugars are and it drives me nuts. i finally just had to tell them to stop asking! i know they do it bc they care but it just got so annoying. my friends are very understanding about and when we are out drinking they always make sure my sugar is ok. its good to know they are there for me.
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well…as of jan 2009 i am no longer on insurance. and i dont work enough hours at work to get benefits. im looking for different ways to get help with my meds bc its so expensive. its very stressful which in turn messes up my sugar levels. its just an ongoing process. my parents will always help with my sugar which is comforting but i just need to get a job with benefits.
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diabetes isnt easy but this site has helped me in so many ways! its just comforting to know that ppl actually understand what im going through. i used to feel so alone but now i know i have a whole family & community of ppl here to help me when times are tough.