Medical Student Needs your Help!

Type 1 and LADA
1

Hello Everyone.

My name is Ryan Heinrick and I am a second year medical student (MD) at Boston University School of Medicine. For one of my small group discussion research classes, we are looking at “the daily life of someone with Type 1 Diabetes.” As a class, we are currently in our Endocrinology block of study. I thought it would be great to ask the community a few questions about their daily lives. I’ll present some of the findings to my small group of future doctors.

Here are some questions that I’m interested in (feel free to answer as much or as little as you desire):

  1. What were the circumstances that led to your initial diagnosis? What is your story?

  2. How did you feel at first? Scared? Guilty? Ashamed?

  3. What kind of education or instructions were you given once you were diagnosed with Type 1 DM and by whom? (Nurse, Dietitian, Doctor?)

  4. What is your daily routine (monitoring, shots, etc) from the time you wake up to the time you go to sleep?

  5. What are some situations that require you to change this routine? (Going out for drinks, traveling, work schedule, etc.)

  6. What are you concerned most about regarding your health in the future?

  7. How has living with Type 1 DM impacted your relationships with others (romantically, friendship, family, children, etc).

  8. How has insurance (and dealing with insurance companies) impacted your life, health and general outlook?

  9. Anything else you’d like to share.

Thank you VERY much for taking your precious time out of the day to respond to these questions. As mentioned before, I will present trends and interesting points I find from this discussion to those in my group. Feel free to be very clinical as I’m very familiar with the diets, drugs, etc (once upon a time I wanted to be a Dietitian and my degree is in Human Nutrition).

If you wish to contact me directly, my email address is: rheinrick@gmail.com

Thank you again,

Ryan Heinrick
BUSM II
Boston University School of Medicine
rheinrick@gmail.com

PS - I used to work with Manny in Arizona when I did website and database programming. He was my boss. I emailed him to ask him about his story and he mentioned that it would be much more wise to ask the community as a whole. Thanks, Manny! You’re the best.

2

  1. What were the circumstances that led to your initial diagnosis? What is your story? Mine was dicovered in my annual bloodwork–have been non D watch since I was 8 due to a kidney ailment that my piediatric kidney doc (did my surgeries and saved my life) would lead to eventual diabetes

  2. How did you feel at first? Scared? Guilty? Ashamed? Scared,Angry at having another disease to deal with–I am a needle phobe

  3. What kind of education or instructions were you given once you were diagnosed with Type 1 DM and by whom? (Nurse, Dietitian, Doctor?) All of these. The first endo my GP sent me to (he referred me to an endo because of my kidney issues–he routinely cares for diabetic patients and is very up on the subject) assumed I was t2–did not see any way that a previous kidney disease (in remission) could cause T1…so wnt through byetta and then juanuvia–I fired her–my GP put me on insulin (70/30mix) after a hospitalization (not D realted) as that is what they gave me in the hopsital, until I could get into a different endo-- Turns out i am a quite insulin senstive labile T1. Was on a pump in 3 months as I am also hypounaware (I have a fantastic endo)

  4. What is your daily routine (monitoring, shots, etc) from the time you wake up to the time you go to sleep? Typical day-up and workling at 5am–check bg & calibrate CGMS, have coffe and 5 oz apple juice
    I do not test before meals unless my CGMS was whack in the morning–CGMS is usually withing 5 of my finger pokes.I do test if the CGMS gives me a high reading before treating
    try to have breakfast between 7:30-8 -doesn’t always work
    try to have lunch somewhere arounf 11:30-12:30–mostly doesn’t work
    dinner is usually 5ish
    snack around 9:30
    night time meds at 10
    11pm last bg check and CGMS calibration
    sometimes a 2 am test is CGMS number looks whack

  5. What are some situations that require you to change this routine? (Going out for drinks, traveling, work schedule, etc.)
    Travel messes up my schedule big time, work schedule can play havoc, asthma falre up, husband illness flare up, illness,

  6. What are you concerned most about regarding your health in the future? Kidney impact since I have only 1 kidney between my 2 (60% function in one and 40% in the other)

  7. How has living with Type 1 DM impacted your relationships with others (romantically, friendship, family, children, etc). romanitcally, bit of a spontinaity killer. Friends and family very supportive. Workplace support can be iffy, some don’t understand there are some meeeting I just can not let run over…HR though has been very supportive

  8. How has insurance (and dealing with insurance companies) impacted your life, health and general outlook? insurance companies suck rocks–and is very stressful to deal with them. have large worries about retirement and how affording D care will work (or not)

  9. Anything else you’d like to share. Glad to see students coming to get real info

If you need/want more detail please pmail me

3

hi, Ryan, it’s wonderful to have you here. I have been t1 for 41 years, pumping for 18. I was about to go to a private school in 1967, and had a physical. A few days later, I got some blood drawn. The next day, my mom and I were told to go to Children’s Hospital in Washington DC. It was there that the admitting secretary told me, “oh, so this is the little girl who has diabetes”. Everything went black as we got in the elevator. I’ve never quite gotten over the fact that someone (my parents or my pediatrician) was a COWARD and couldn’t tell me themselves about having diabetes. I had my 13th birthday in the hospital.

Things went pretty well for me and I never kept my diabetes a secret from anyone. I’ve only got peripheral retinopathy, glaucoma and tendonitis and carpal tunnel. I take Altace and Diovan. I’ve never been in the hospital because of my d, no DKA ever. I did rupture my kidney in 1979 but that was my worst hospitalization. Things got really depressing for me last year when it seemed my skin was trying to tell me “I can’t take it anymore - no more needles”. That is what led me to the wonderful world of TuD - answers for my scar tissue issues. I have not found any answers but I’ve made lots of friends who are at my side to help me accept and adjust to my new routine and understand what I’m going through.

That routine is that I must test 8-10 times a day, eat low-carb, exercise more, and change my infusion set every other day (at least). I must keep a detailed log of where I put my set (picture of this on my page). Every time I change I say a prayer because I never know if it’s going to be in a spot where there is scar tissue which means bad absorption. Every time my bg is high I try to figure out what did it - bad site, kinked set, bad insulin, incorrect carb counting, no exercise, stress, lack of sleep, infection somewhere, or, just for no apparent reason at all. I’m doing my best but it’s never good enough in the eyes of my endo, who is a cold unfeeling fish compared to my regular doctor, whom I love. I think of diabetes as a monster, the devil who loves to come around when you’re feeling pretty good about yourself, and pull the rug out from under you, and then while you’re down, kick you in the face and laugh at you while he’s doing it.

I’m lucky my husband has a good job but our medical costs are astronomical. There are many here who believe as I do that diabetes is such a cash cow for the pharma companies they never want to see it cured. I recently had to buy one bottle of insulin for $150.00 in New York City. I wish they were forced to look at some of the pictures, posts and videos of the kids here and all the other desperate and sad souls at the end of their wits without enough money for their supplies.

Again, Ryan, welcome here and good job with this post. I hope you get a lot of replies.

4

Hi Ryan

  1. My grandmother was diabetic and my mother could tell from my breath (it smelled like rotten fruit) that I was diabetic. That is a sign of DKA. I had also lost 30 odd pounds and was drinking water like a fiend. This was in 1970 and I was 7 years old.

  2. I don’t remember much except asking a couple of times “why me”. Any more, if anyone asks me how I feel about being diabetic, I just look at them kinda of weird, it seems an odd question to me. It’s like brown hair and blue eyes, it just is.

  3. there were some basic nutritional guides and pamphlets for kids about diabetes. The doctor (this was at an army hospital) gave us the diagnosis and talked to us about shots. and a nutritionist discussed diet with us. I’m sure mom had alot more contact with folks than I remember.

  4. Get up, get ready for work, test sugar, bolus any correction or for breakfast (I sometimes skip breakfasts or lunches), test 2hr PP, test before lunch, bolus if needed, test 2hr PP, test before leaving work as I often go low in late afternoon. test before dinner, bolus, test 2hr PP, test before bed, rinse, repeat…

  5. Weekends are always a little odd for me, I’m a nightowl by nature, so I stay up late, sleep late. Any situation can change this routine. I guess I don’t consider my day a single routine. What is coming up in the next few hours is the "“routine” I worry about. Is “Situational Routine” a catch phrase? maybe I should trademark it…

  6. long term, I worry about the usual stuff: blindness, nerve damage, circulatory problems, etc, etc. Health Insurance is probably my biggest concern tho. Being able to get the kind of care I need without long delays or huge bureaucracies to deal with.

  7. Probably, I don’t think my ex-wife really understood it. If I was to go out with someone who was bothered by it, I wouldn’t want that person in my life anyway. Most friends really don’t get it unless they have some type of chronic condition also. It’s the day-in, day-out dealing with it that is a shocker to most people. My kids have always known me as diabetic (they are both in high school), they can spot my lows before I can most times.

  8. Dealing with insurance is just a pain. They will regularly short you 3 or 4 days of insulin do to the vial size, but if you go more than 1 day over a 30 day supply on your test strips, they want a second copay for those 20 strips. They still view diabetes management as a science, however, out here in the real world, it is much more of an art and sometimes you need a little extra insulin that month or test strips or… Right now my insurance company has a lower copay level for OneTouch test strips and insulins from Eli Lilly. I took Humalog, which was a Lilly product at a $30 copay. Now I take Novalog in my pump which is a $55 copay. From what I can see, diabetics are the only ones offered this type of “special savings”. That bothers me alot

  9. this site has helped me immensely. I recently started pumping and if it hadn’t been for folks here, I probably would have quit inside the first month. The emotions at the onset, to me anyway, are much less important than the ones in the year that follow. This is a lifelong task that must be managed constantly to avoid complications as long as possible, and honestly, that wears a person down. There are days I just don’t want to deal with it. I suffer from clinical, chronic depression, as do many other. Children who have chronic conditions are faced with things kids just shouldn’t have to deal with yet, it’s no wonder so many of us are depressed.

Good luck Ryan!

Scott

5

Wonderful that you’re here to learn more. If you have time as a busy med student to go through some posts there’s a lot of info about the care & lack of diabetics have received from the medical community. Far too many were sent home with an Rx & nothing else. Sadly, a common theme that we’ve had to educate ourselves.

  1. What were the circumstances that led to your initial diagnosis? What is your story?

I thought I had the flu when I was ill for three days with unquenchable thirst, constant urinating & vomiting. My husband took me to the ER. DKA with 809 BG. I was immediately admitted to ICU. No one in my family has either type of diabetes.

  1. How did you feel at first? Scared? Guilty? Ashamed?

Scared, upset, confused, angry. Never been ashamed of having diabetes.

  1. What kind of education or instructions were you given once you were diagnosed with Type 1 DM and by whom? (Nurse, Dietitian, Doctor?)

I was given info by nurses & a dietician while in the hospital, though not much. It was all ADA nonsense, which I rejected. Hospital referred me to their diabetes ed center. These classes were useless & geared towards Type 2. My internist is wonderful. I’m on my third endo. Went to a CDE, but she wasn’t particularly helpful.

  1. What is your daily routine (monitoring, shots, etc) from the time you wake up to the time you go to sleep?
    I’m on MDIs & don’t want a pump.
    Test 8-10 times a day. First thing I do as soon as I wake up & last thing I do before bed.
    Basal insulin 2x day. First thing in the morning & right before bed.
    Injections before meals, of course.
    Injections to correct highs.
    I try to eat on a regular schedule–4-5 hours between meals consistently.
    I eat low carb & use a scale to weigh food.
    I try to exercise every day. Not big work outs, lots of walks.

  2. What are some situations that require you to change this routine? (Going out for drinks, traveling, work schedule, etc.)
    Traveling plays havoc with my BG. Going to parties, going to someone’s house for dinner means changing my schedule, but it’s worth it:)

  3. What are you concerned most about regarding your health in the future?
    Heart problems because almost everyone in my family has cardiac issues.
    All the usual complications–eyes, kidneys, neuropathies.
    Worry constantly about the expense & how I will be able to afford this for the rest of my life.

  4. How has living with Type 1 DM impacted your relationships with others (romantically, friendship, family, children, etc).
    I was married 25 years before being diagnosed Type 1 & am very fortunate to have an incredibly understanding & supportive husband. My family & friends have been great. Work is fine.

  5. How has insurance (and dealing with insurance companies) impacted your life, health and general outlook?
    Ugh, insurance companies. Sure my BG soars every time I deal with them. Exasperating to have to explain & fight for what I need what I need to survive.

Thanks for asking these questions!

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  1. What were the circumstances that led to your initial diagnosis? What is your story? i was 10 in the fifth grade at nad at confrences my teacher mentioned to my parents that i was using the bathroom a lot she was afraid i might have a kidney infection, so my parent took me in for a urinalysis the sugar came back high so they did a blood test and i’ve been diabetic ever since… tehe

  2. How did you feel at first? Scared? Guilty? Ashamed? i don’t know if scared is the right word, but ti wasdefinately something along those line. i don’t think i had ever even heard of diabetes

  3. What kind of education or instructions were you given once you were diagnosed with Type 1 DM and by whom? (Nurse, Dietitian, Doctor?) i was kept in the hospital for a couple days, maybe even close to a week, my mom and i saw and talked to everybody. i gave myself my first injection of insulin, next my mom, then my dad. i was given a meal plan, taught when and how to give injections and blood tests

  4. What is your daily routine (monitoring, shots, etc) from the time you wake up to the time you go to sleep? once i can open my eyes i test, take insulin, eat (ocassionally i take my shot after depending on what i have planned) i usually try to test two hours later and correct if need be, at luch same deal as breakfast and dinner the same. i test before bed and take my lantus.

  5. What are some situations that require you to change this routine? (Going out for drinks, traveling, work schedule, etc.)
    i usually keep a fairly flexible schedule, so my “rountine” is almost always different

  6. What are you concerned most about regarding your health in the future? after 16 years of diabetes and only 1 visit to the er in that time i haven’t really been that concerned, but i guess if i really think about it i’d be nervous about eye and foot problems

  7. How has living with Type 1 DM impacted your relationships with others (romantically, friendship, family, children, etc).
    when i was first diagnosed kids avoided me like the plague, but since then i really haven’t noticed, i tell everyone up front, i’m very open with it, although when my 2yr old whos not a diabetic tries to test its kinda funny

  8. How has insurance (and dealing with insurance companies) impacted your life, health and general outlook?well the one time i went to the er i was in dka because my insurance wouldn’t cover me for 18 mts, ive had to skip appts and skimp on medication whe i couldn’t get insurance

  9. Anything else you’d like to share. when i was diagnosed everyone in my grade school had to be retrained on how to deal with a diabetic because there had been a diabetic in that school in over 8 years

7

Hi Ryan,

Here are my answers. BTW, I’m a 23 year old female living just outside NYC and I work full-time.

  1. What were the circumstances that led to your initial diagnosis? What is your story?
    I had all the classic symptoms - excessive thirst and urination, losing weight despite constant eating, grouchy. I probably had the symptoms for about 3-4 weeks before I was diagnosed. I told my mother my ear hurt (totally unrelated) and my mom took me to the doctor. While I was there, my mom mentioned what was happening and they ran a urine test on me (this was back in 1994) and the rest is history.

  2. How did you feel at first? Scared? Guilty? Ashamed?
    Well, I was 8 years old so the idea of having to go the hospital was scary. I didn’t feel guilty or ashamed, mostly because I knew I didn’t do anything wrong. I guess I was mostly upset at the intrusion in my life, and just annoyed a lot!

  3. 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 a pretty thorough education with workbooks and videos and lots of practice. All of the above talked to has at different points. The nurses covered things like how to test and give an injection, the dietitian talked about what to eat and count carbs, and the doctor talked more about what the disease was, why I had to take insulin and that sort of thing.

  1. What is your daily routine (monitoring, shots, etc) from the time you wake up to the time you go to sleep?
    It has changed wildly since I was 8. I’m not on an insulin pump. I test when I wake up, sometimes mid-morning, lunch, mid-afternoon, before the gym, after the gym, at dinner (after the gym and at dinner are sometimes combined into 1 test if I eat dinner close to when I finished working out), and at bedtime. Plus anytime I’m low. I’m also on a CGM, so that changes things. I usually test 3 times a day, plus anytime I’m going to take insulin or if things are going up or down - so again, probably 5-6 times a day.

  2. What are some situations that require you to change this routine? (Going out for drinks, traveling, work schedule, etc.)
    Routine is a funny thing when you’re on a pump because everyday is different. I have lunch at different times, I eat at different times, I test at different times. All of these are on average but at any given point it could change and I’ll need to test. Going out for drinks or traveling doesn’t really change the fact I need to test, but the results from testing could be different or I may need to take extra insulin or change my basal rate.

  3. What are you concerned most about regarding your health in the future?
    Sometimes, but usually not. I take care of myself and I’m confident that medicine is progressing so that complications will be easier to treat or reverse.

  4. How has living with Type 1 DM impacted your relationships with others (romantically, friendship, family, children, etc).
    I have lots of friends, a family that was very attentive and involved, and a boyfriend who cares about me. So far so good!

  5. How has insurance (and dealing with insurance companies) impacted your life, health and general outlook?
    Insurance is a constant worry, though I have been blessed that I haven’t had to do much fighting. But I always worry about whether or not changing jobs will ruin things for me.

  6. Anything else you’d like to share.
    You can email me at amblass@gmail.com

8

Thanks for asking these questions! It’s great to see future doctors interested in what our actual experiences are like.

  1. What were the circumstances that led to your initial diagnosis? What is your story?
    I was diagnosed this past summer (I’m 21). I had been extremely tired for several months, eating a lot, eventually going to the bathroom a lot and inordinantly thirsty. I never knew anyone with type 1 diabetes, so didn’t know what these symptoms meant, I just thought it was the usual stress of school. Eventually I got a really bad UTI and was concerned about a kidney infection–I went in to the student clinic at my school and they did a urine test, found the UTI and gave me antibiotics. They sent me off but then called me back shortly after saying they missed something on my test, that had sugar in my urine–I had no idea what that meant, so just went back over to get it checked out. The first nurse I saw brought in a blood testing kit and asked me if I had a history of diabetes in my family. This question alone was quite a shock, no one had told me what they were worried about. The reading came back ‘HI’ so they drew some blood to get confirm the reading and decide whether to send me to the ER or urgent care. Several hours later my blood sugar came back at 552, so off to the ER I went. I was in DKA, so stayed in the ER for about 12 hours until ketones were coming down and the GAP was closing, and they finally let me eat again. I then stayed in the hospital for about 4 days.

  2. How did you feel at first? Scared? Guilty? Ashamed?
    Scared and angry above all. I’ve dealt with a lot of chronic health issues (depression, migraines, food allergies…), and just could not believe this was happening to me, that I had something else on top of it all. I cried and cried the whole time I was in the hospital, a lot in the coming days and weeks. I never felt guilty or ashamed–I remember thinking, 'well at least I know I didn’t cause it," thinking about type 2, which of course is an inaccurate conception of type 2, but it’s what I thought. I was proud of myself for being open about it and taking my shots in public. It never occurred to me to be ashamed of it until someone at work suggested I go to the bathroom to do my shots because other people didn’t like needles. Needless to say, this infuriated me and had made me passionate about raising awareness.

  3. What kind of education or instructions were you given once you were diagnosed with Type 1 DM and by whom? (Nurse, Dietitian, Doctor?)
    I met my endo while I was in the hospital, she explained all the tests and what it all meant. I also saw a CDE who was really great, once she saw that I was catching on pretty quickly she said I could calculate my insulin according to the number of carbs I would eat with each meal, instead of eating so many carbs according to a set amount of insulin, which I guess is what they usually do. A Nutritionist also came to talk to me, but was really horrible, she just couldn’t figure out what to do with me because of all my food allergies (and I was thinking, you’re a nutrionist aren’t you?!). Since then I’ve seen my endo and a different CDE, who are both amazing. Within 3 or 4 months they got me on a pump.

  4. What is your daily routine (monitoring, shots, etc) from the time you wake up to the time you go to sleep?
    I test 8-10x/day. I’m honeymooning still so my insulin needs are in flux, and having to adjust my dosage maybe every month or so. I get up, test, give insulin, shower, eat breakfast. Test 2 hours post-prandial. Test before lunch and 2 hours later. Test before dinner and 2 hours later. Also before and after any snacks or if I feel low or high or if I’ll be driving. I’m on a pump now, so all fast-acting insulin. I change my infusion site every 3 days, and change my insulin cartridge every 6 days.

  5. What are some situations that require you to change this routine? (Going out for drinks, traveling, work schedule, etc.)
    Having drinks, exercise, not getting enough sleep (high bg), more stress (higher bg), being sick.

  6. What are you concerned most about regarding your health in the future?
    I’m concerned mostly about getting more autimmune diseases. I’ve already been tentatively diagnosed with celiac and am worried about what might be next. I’m fairly confident that I’ll be able to manage my blood sugars well enough, as my A1cs since dx have been pretty good, but of course I still could get complications. I am worried about getting tight enough control for when I get pregnant.
    I’ve also had a lot of infections since dx–UTIs, yeast infections, MRSA, so I’m hoping I can get that in check.

  7. How has living with Type 1 DM impacted your relationships with others (romantically, friendship, family, children, etc).
    Everyone has been extremely supportive, it’s been really amazing.

  8. How has insurance (and dealing with insurance companies) impacted your life, health and general outlook?
    I’m really grateful both for my specific insurance plan and for my family, who I know will be able to support me if insurance doesn’t come through at any point. I need to be able to test as often as I am, and it has surprised me how hard it is to get approval to do that, I’ve had to get endless approvals and overrides from both my endo and my insurance company. Even though dealing with insurance has been a huge pain, I know I’m extremely lucky to have the coverage I have–they didn’t give me any problems in getting a pump–and don’t know what I would do without it. It’s made me much more cognizant about the problems with health care in our country.

  9. Anything else you’d like to share.
    TuDiabetes and type 1 blogs have been a really amazing resource that have had a huge impact on my in the past 6 months. I don’t know how I would have gotten through this without the support and validation I’ve found there.

9

  1. What were the circumstances that led to your initial diagnosis? What is your story? I was working as a waitress and started feeling tired all the time, then i started feel thirsty, then i went the bathroom almost every hour, i had constant yeast infections, i lost a lot of weight but didn’t notice because i was exercising, and i had mrsa before being diagnosed. I didn’t know anything was wrong with me because i thought this normal feeling because of all he hard work i was doing as a waitress (long days, stress). I went to my local Urgent care and told them my friend and I though i might have diabetes, they tested my sugar, gave me some pills, and that was that. I didn’t take the pills because i really didn’t know the seriousness of diabetes. Couple of days later i started feeling really sluggish, my mouth was dry to the point it was peeling, my breathing was shallow, and i slept all day. I didn’t go to the doc because i didn’t have insurance, my friends convinced me to go to the ER. I was to weak to argue. I think i passed out a couple times and when i woke up i was laying in a hospital bed hooked to IV’s. They said i almost went into DKA and could have died if i hadn’t come sooner.

  2. How did you feel at first? Scared? Guilty? Ashamed? I felt sick for a long while. I was scared of eating and waring myself out. I didn’t feel ashamed because i didn’t do anything to cause my type 1 diabetes. It was kind of exciting at first, in a weird way, because it was an answer to why i was sick and there was a solution to fixing it! But i didn’t realize how hard it would be.

  3. What kind of education or instructions were you given once you were diagnosed with Type 1 DM and by whom? (Nurse, Dietitian, Doctor?) A Diabetes Educator visted me while i was in the hospital and gave me some literature. She told me that I would have to take shots, count my carbs, and number one starting rule was to cut cola. She said i could call her anytime. I think i was supposed to fellow up with my er doc but he had no openings. So i really didn’t have any doctor guidance, just the diabetes educator.

  4. What is your daily routine (monitoring, shots, etc) from the time you wake up to the time you go to sleep? I’m supposed to check my sugar before and after meals. Take three shots of humalog a day and a shot of Lantus at night. In between i monitor how i feel, and try to avoid hypoglycmia with snacks or juice (personally). I have to write down my carbs, the amount of insulin taken, and my sugars before and after meals. I try to every 3-4 hours, amongst my 3 meals and 3 snacks.

  5. What are some situations that require you to change this routine? (Going out for drinks, traveling, work schedule, etc.) Since i work third shift I sometimes have to wake up early or stay up later from work so i can run errands for things open during the day. Sometimes i don’t want to take my medicine and that changes everything and leads to me not testing or taking the right amount of insulin, this can effect me for days to months that i do this. Sometimes at work i have to postpone eating because my break is different, i could fight this if i wanted. But i hate to have my diabetes be a inconvience to my work ethic.

  6. What are you concerned most about regarding your health in the future? Losing eyesight, amputated leg, the usual horrors but these seem so far away that i don’t really let it sink in my head that this could happen, could be because i’m still a new diabetic and I’m young (my body fights it better now). I worry about yeast infections and urinary tract infections.

  7. How has living with Type 1 DM impacted your relationships with others (romantically, friendship, family, children, etc). Hasn’t really impacted it in a bad way. It’s something you either they have to accepct or they don’t and you move on. But sometimes when you felling bad you might act out against loved ones. They might not have diabetes but they have somebody who has it, and that can make it just as hard for them to see you suffer.

  8. How has insurance (and dealing with insurance companies) impacted your life, health and general outlook? I don’t have insurance. The only insurance i had didn’t include diabetes because i was “pre existing.”

  9. Anything else you’d like to share.
    things i notice: misconeptions from others about what you can and cannot do (or eat). The doctors i’ve encountered don’t have time for diabetes, and you will waste alot of money till you find a good one. Being diabetic is expensive, especially if you don’t have insurance and have to pay hospital bills out of pocket. Because of that i’m sure alot of people avoid going to the doc or er, i do. Alot of diabetics deal with denial, guilt, and anger. Alot of new diabetics are told the basics and then let out in the real world with no raft. I try my best to do pay and get help for my supplies but i always find that bills not related to diabetes go ahead of everything else. I can’t afford to be broke because i need good food, good medicine, and a good job to pay for it, But it’s a bit like the snake eating itself when it comes to all that. Without food i can’t take my medcine, wiithout medcine i can’t take shots for my food, wihtout insurance i can’t afford to see the doctor or get the supplies i need, without money i can’t do anything.

10

  1. What were the circumstances that led to your initial diagnosis? What is your story?
    I was 10 and had been sick for a few solid weeks. Finally I got checked into the hospital with end stage DKA.

  2. How did you feel at first? Scared? Guilty? Ashamed?
    Pissed off, with a side order of denial

  3. What kind of education or instructions were you given once you were diagnosed with Type 1 DM and by whom? (Nurse, Dietitian, Doctor?)
    All of the above, when I was diagnosed I spent two weeks in hospital, a few hours a day were spent being instructed, by all of the above.

  4. What is your daily routine (monitoring, shots, etc) from the time you wake up to the time you go to sleep?
    Test blood take insulin, repeat from wake till I fall asleep

  5. What are some situations that require you to change this routine? (Going out for drinks, traveling, work schedule, etc.)
    Cross country driving trips. Last summer I saw both ends of i90 and everything in between.

  6. What are you concerned most about regarding your health in the future?
    complications

  7. How has living with Type 1 DM impacted your relationships with others (romantically, friendship, family, children, etc).
    Not much, but back when I was younger I got dumped a number of times by girlfriends who decided they “Couldnt handle it”

  8. How has insurance (and dealing with insurance companies) impacted your life, health and general outlook?
    I know they are not to be trusted.

  9. Anything else you’d like to share.

11

Just before my highschool graduation in 1957, I began to lose weight. By the time I was diagnosed with type 1, I had dropped from 195 to 140. I was constantly thirsty and having to urinate. In my GP’s office, he drew blood several times, the first being a fasting bg. Then he made me drink something sweet before drawing more blood. This was repeated four or five times as best I can recall. The blood sugars went through the ceiling. He had me admitted to a hospital. There I practiced giving shots (water) to an orange. They sent me home on a 1500 calorie diet. I don’t recall what insulin was prescribed or how often I took it. After all, that was more than 50 years ago. I do remember that the syringe was glass. It and the needles were boiled before each shot.

My first reactions were fear and disappointment. I had watched my grandmother waste away and die of diabetic complications at a relatively early age. A diabetic lady across the street sat in a wheelchair with her legs missing about half way up her thighs. My disappointment was from my plan to join the US Navy Missle Program after I graduated… Obviously, I have been 4F since my diagnosis.

The only personal testing available to me back then was dropping a pill into a test tube of urine and comparing the color with a chart. The only detail I remember about that is that blue was good. Later, I dipped strips of reagent paper and compared the color to a chart. This was very inaccurate because of a variable called my spillage threshhold. Everyone spills sugar into their urine at a different blood sugar level.

For about the next 35 years, I tried to stay on a strict diet and take shots twice a day. The doseages were only varied by my doctor once or twice a year.

During these years I suffered from various complications. Some of these are retinopathy, neuropathy, & erectile disfunction. I have had several tendon surgries on my wrists and hands.

Between the ages of 47 and 65 I had no health insurnce. I pastored a series of small churches, none of whom were able to provide health insurance.

About ten years ago I started seeing a GP who had an interest in my diabetes. She was amazed that I had survived so long. She was able to pull strings and get me in touch with a diabetic educator. She said I needed to go on a pump. However with the cost out of the question, she got me started on Lantus and a sliding scale for my Novolog. Praise the Lord, she kept coming up with free insulin samples.

When I turned 65 and became eligible for Medicare, I tried to get on a pump again with Medicare picking up the cost. Unfortunately, they had a hoop through which I was unable to jump. That being my C-Peptides.

Back in November, I was able to pass that hurdle. Now, I have my pump and am having it installed 1/19 (with saline solution) and 1/25 on Novolog.

I see you are from Boston. I just learned that I am eligible for the Joslin Bronze Medal for insulin dependence for more than 50 years. Unfortunately, none of the witnesses have survived me. :wink:

12

Ryan: Happy to help out.

  1. What were the circumstances that led to your initial diagnosis? What is your story?

I was a sophmore in college (early 1982) and got bronchitis. Shortly after that came incredible thirst, urination and weight loss. While at home over spring break, I saw a doctor, who told me I was 4+ urine sugar. He then worked to find me a specialist.

  1. How did you feel at first? Scared? Guilty? Ashamed?

Scared, confused.

  1. What kind of education or instructions were you given once you were diagnosed with Type 1 DM and by whom? (Nurse, Dietitian, Doctor?)

My doctor gave me several menu plans and instructions on how to take injections and check urine sugar. I did not have a dietician or educator or nurse for many years. In retrospect, the instruction was pretty anemic. I’m now on my 4th doctor, traveling from NYC to Boston to go to the Joslin Clinic. The education/information there is better than what I have received from others in the past.

  1. What is your daily routine (monitoring, shots, etc) from the time you wake up to the time you go to sleep?

I’m on a pump and CGM and test often. I check BG 8-10 times per day, try to exercise 5-7 days a week, and try to develop a routine, but it is not always easy. During the week, I exercise just before lunch. On the weekends, it depends on my schedule during the day.

  1. What are some situations that require you to change this routine? (Going out for drinks, traveling, work schedule, etc.)

I do not have to change my routine that often.

  1. What are you concerned most about regarding your health in the future?

Complications. I’m 46, with some heart issues, but no outward complications, and want to make sure that I avoid complications as long as possible.

  1. How has living with Type 1 DM impacted your relationships with others (romantically, friendship, family, children, etc).

Diabetes and my care of it was the principal factor leading to the end of my marriage. My hypoglycemic reactions and my 10 pound weight gain from marriage 15 years before, and unwillingness to embrace an extreme fitness and diet regime caused, shall we say, things that could not be gotten past. Since the end of the marriage, some people I have dated have been turned off by my diabetes, but I am now in a relationship with a woman who cares about the person, not the condition. My girlfriend is very interested and asks a lot of questions and is very supportive. I will refrain from sharing any observations about my ex-wife and her participation/interest in my diabetes.

My daughter (9 years old) has become attuned to when I am low and has, for years, been sympathetic and helpful. Other members of my family tend to think that every time I test myself, I am low and do not seem to understand what it takes to be diabetic from hour to hour.

  1. How has insurance (and dealing with insurance companies) impacted your life, health and general outlook?

My insurer is pretty good about pump supplies and prescription drugs. They are lousy with reimbursements of doctor, cde and nutritionist visits. However, they call me every month with a “diabetes nurse educator” to talk with me about my care. It is always a different one, and I always know much more than they do.

  1. Anything else you’d like to share.

I think there are a lot of people on this site who would be very interested in the substance of the discussions in your class.

13

Hi Ryan,
I can answer but keep in mind I was born with Cystic Fibrosis so my answers may not have commonality or they may.

  1. What were the circumstances that led to your initial diagnosis? What is your story?
    I always struggled with keeping on weight but all of a sudden I could not keep any weight on and I was hungry all the time. I thought is was CF crisis but I was also urinating alot and drinking so much fluid. So when I went to work the next day after putting together these symptoms in my head and knowing that if you live long enough with CF you will get diabetes I asked a co worker who was type 1 to check my sugar. It came out to 569 and he freaked out I just kind of sat down for a second. Then I went to my local Doc’s office who injected me with 10 units of Regular and said go to the ER. I should had gone there first but I was so used to illness that I just was taking it in stride.
    So off to the ER who saw my right away checked my BG it was 444 the doctor ordered another 10 units to which I said they gave me 10 units to which he replied well it is not enough. I tried to explain I was a CF patient and probably had some working insulin cells to which his ignorance showed when he said CF does not cause DM. 30 min later I was passed out with a BG of 19. I was to sick to get mad at the doc who then decided because I passed out to put me on pills for diabetes and send me home to which i replied I don’t think this will work because I don’t think I have enough insulin cells I do not have insulin resistance to which he replied you may never eat sugar again and walked away.

So home I went only to be back in the ER another doc thank God who said your PFT is very low you need insulin and we are admitting you so 5 days later I was released on injections.

  1. How did you feel at first? Scared? Guilty? Ashamed?
    I was a bit indifferent having been sick my whole life I just added it to my stuff to take care of I did not get mad until the long fight trying to get docs to understand the effects one disease had on the other the DM pissed me off cause it would not behave as it should for a compliant patient.

  2. What kind of education or instructions were you given once you were diagnosed with Type 1 DM and by whom? (Nurse, Dietitian, Doctor?) great education about DM by my Endo and CDE but I was the one educating about Cystic Fibrosis Related Diabetes or CFRD and I found that to be a bit disrespectful to me as I felt even though the adult CF population is small DM is present in almost all cases reaching a certain age and that Endocrinology should be aware of that and at least a bit educated.
    After 4 years if hospital stays, passing out, 5 different insulin’s they put me on a pump and I immediately starting getting better.

  3. What is your daily routine (monitoring, shots, etc) from the time you wake up to the time you go to sleep?
    I wake around 6 I check my BG adjust for any high and start a temp basal of 125% to reduce my always climbing after I wake up BG. I make my coffee and eat a piece of string cheese because my BG rises less when I have eaten a small amount of food but I choose that so I don’t have to cover it. I drink about 16 ounces of propel and have coffee and eat about 2-3 hours after I get up. I eat lunch 4-6 hours after breakfast and dinner 4-6 hours after that. I eat a large amount of food I have to so about 2800 calories more if I am trying to gain weight. Hyponetremia (SP) (all low electrolytes) I never had this so sever it was always just low salt before DM. I can not do low carbs since I do not break down fat’s and proteins well even with Viokase. So for the most part I have learned how to cover all foods with insulin and I eat anything. I go to bed around 12am and yes I do nap in the late morning :slight_smile:

  4. What are some situations that require you to change this routine? (Going out for drinks, traveling, work schedule, etc.)
    Activity I need a smaller amount of insulin then most for a normal day and I need only a tiny basal if I am active. My basal can be .2 and my BG is stable on active days.

  5. What are you concerned most about regarding your health in the future?
    Complications and they are so frustrating. I can not get an A1C in the 7’s without so many low BG’s it is hard to function. Getting my A1C anywhere under 7 means emergency shots and waking up in the ER with a dextrose IV. I have brain damage from so many lows because I want a lower A1C. I Have come to accept with my doctors prodding that my insulin response is so outside the norm that I just can not shoot for the A1C I want :frowning: So I will get the complications but at least it will not have been for lack of trying the past 12 years.

  6. How has living with Type 1 DM impacted your relationships with others (romantically, friendship, family, children, etc).
    Everyone worries about me all the time I hate that. I don’t go out as much I hate that. Sometimes sex is delayed with DH cause I need to get my BG up I hate that, I really hate that :stuck_out_tongue: I don’t get to see my grand kids so much cause my immune system is so compromised I hate that the most.

  7. How has insurance (and dealing with insurance companies) impacted your life, health and general outlook?
    Maybe because I was raised in the hospital I am so used to dealing with these things that I know just what I need to make sure I am covered for when buying insurance. I deal with them well kind of straight up. I have the coverage I want because I knew how to set it up that way. Most people do not then they end up with something not covered. Insurance need to be more obvious with there coverage details.

  8. Anything else you’d like to share.
    I guess want to I want to say is not everyone is going to fit in a box. Sure there are some common things among DMers but if you see a DM patient who’s numbers are not that great but they are going to there appointments and doing labs and everything else it is a disservice to before you have all the information to put them within communality of likelihood I can to tell you I really can’t! How many times in the past 12 years I have almost died and twice died because of that. Assumptions of communality are dangerous to some of us.

Be well and be loved

14

  1. Well you need to know what a professional who taught diabetes for over 40 years (professional member of ADA) does when standing at the sink drinking water. I went right to the car, got some urine test strips, and diagnosed myself. It was in 2001, I was 71, half-retired, female, 110 lbs, 5’3", down south during the winter, and the next day I was to leave for home up north. So I did. Three days later I was in an internist’s office getting it confirmed.

  2. Felt that I had rightfully finally gotten it. Our daughter was a Type 1. My father who died in 1986 had died with glucose tabs in his pocket and tho I tried to get them sent to me (he was out of state), they lost them. So right then and there I decided I was more likely than not going to get it. No guilt, no balk, no nothing. I treated it like I’d treat anyone’s diagnosis.

  3. The instructions were fast, two hours at most. I had managed patients and taught diabetes educators at a masters and doctoral level. The dietitian, however, wanted to give me an ADA diet complete with 50-60 gm CHO per meal. I prevailed on her to give me a 45 gm diet, and then I cut it down later. She gave me the ADA exchange book!

  4. Up at 7: Test, give 8.5 u Lantus Record on both a 17 column test sheet as well as in a 4x6" spiral notebook with one page for one day. I record all tests, all food or glucose tabs or Reese’s or jelly beans or cereal bars.
    Eat breakfast. 30 gm CHO & give 3 u Humalog 1:10
    After breakfast I have a habit of going over my test sheet, transfer it to an Excel spreadsheet which has automatically figures my daily sensitivity for both daytime and evening. They’re different. Sets me up for my day.
    9am: one cereal bar, 15 gm CHO (I need something other than fruit since fruit puts me on a roller coaster.
    If I go shopping at a large store, I take 10 gm glucose tabs. If I go to a mall, I take 15-20 gm glucose tabs.
    Noon: Test; Eat 30 gm CHO & give 3 u Humalog. 1:10
    2 pm: one cereal bar, 15 gm CHO
    6 pm: Test; Eat 30 gm CHO and give 5 u Humalog 1:7
    8:30-9 pm: Test; Give more Humalog if above target (80-120)
    10pm: Give 3u Lantus.
    I if go to a rec center or exercise with any machines, I take 3 glucose tabs.

  5. Work doesn’t change the routine. Pseudogout changes my routine.
    This requires draining my knee every so often. Aristospan 20 mg is injected. When I go to the doctor’s, I take with me more Lantus (BASAL, NOT BOLUS). If he drains it, I return to the car and take 4 more units of Lantus. Then for the next 3 days I take 4 units mid-day of Lantus. The fourth day I give 2 units. This keeps me from going into the 400s. The Humalog then requires a bit of fine tuning.

  6. I’m not concerned about my health particularly. My cholesterol couldn’t be better.
    I shocked the internist one day about a year after the continuous monitoring of interstitial fluid was being used - since I’m not the first nor the last to use medical tech products. I asked for a Dexcom monitor. I had already downloaded and studied the manual, I knew exactly how it worked (after retiring, I had continued taking the courses for diabetes educators), and I decided that with the drugs being tried for pseudogout and the glucose rises and edematous face and the problems I was having with them, I could reduce my problems by having a monitor to catch the rises a bit earlier than what my 10 tests per day were doing. I had an A1c of 7. This is what the articles said would keep one from complications, right? So he sent me off to an Endo who agreed with me. I got the monitor, and now have had an A1c of 6.3 after 6 mos. My spreadsheets tell me it will be lower next time, but I don’t really need it lower.

I AM concerned that when I am in a hospital I be allowed (if I am not under sedation) to figure my own carb grams and give my own insulin. An issue of real concern is when a diabetes person is in the hospital. You physicians need to know that a person who is capable of caring for himself in the outside-of-hospital working, stressful, world, with an appropriate A1c, should be allowed to give himself his own insulin and choose his own food. He should be allowed to keep his own record. And the hospital’s own rules need to be changed in this respect. Rules that say a nurse cannot bring the insulin and syringe etc. to the bedside for the patient to use are outdated. Rules that say the patient’s insulin cannot be stored in the unit’s refrigerator need to be changed. (I have some experience in this and I know the ways around the rules.) The rules need changing since not all know how to circumvent rules.

  1. My husband, a retired anesthesiologist, goes into an absolute panic when I go low. And I have gone low. We play Scrabble every evening and if I’m too slow he looks for a blank stare or my lack of talking. He didn’t know what to think about the monitor, but it has lowered his anxiety. I am the one who drives for us, and he realizes I am a cautious person, not given to thinking I can drive below 110. And he knows I test A LOT more often when driving all day.
    I still shake & have the epinephrine taste at 70. I have lost no sexual sensations (nor foot sensations), so nothing changed. We do not sleep together at night so my monitor can alarm without waking him.
    Our rambunctuous drinking parties were never able to be held because he always had to be in surgery by 6:15 every morning, so we haven’t given up things like that. Sorry. I know I can’t drink without taking food, so I’ve never tried it. I still hold the Thanksgiving Dinner per usual with all the usual items. I know what 30 grams is, and being persistent like all Ph.D.s are, I persist in still eating 30 grams no matter what’s on the table.
    Our grandson of 9 is ready to phone 911. I don’t think he would be so ready if he hadn’t learned that granny here can go klunk.
    Our children were used to having diabetes in the family from when one daughter had it.

  2. Medicare and insurance cover a lot. Not all, however. Co-pays are getting higher. Medicare and insurance do not cover the monitor nor the $250 per month for the sensors. Insurers do not major in preventive care.

  3. Feel free to ask me questions. I always used our family’s diabetes in my teaching plans and even speculated during lectures that I would sooner or later have it. Best wishes to you as you work through the issues which are certainly more than diagnosis and treatment of physical problems. And when you are licensed and practicing, work on the rules in the hospitals.

15

  1. What were the circumstances that led to your initial diagnosis? What is your story?
    I personally felt sick and presented symptoms years before I was diagnosed. Have never made much sense of it, but would feel sluggish, tired, unable to focus. Same as I feel when high. I had also passed out in school at the age of 10 from not eating my breakfast. I fell and hit my head on a table. Split it open and needed stitches. They never checked my BG levels. I had been in the doctor’s office alot. My mom and I were made to feel like hypochondriacs. Annual bloodwork showed a fasting BG of 89 and it was not looked into further. I went to a general practitioner when I was 17 for bloodwork because my dad had been diagnosed with a blood disorder and he wanted me screened. (should mention that I had been drinking rediculous amounts of water - over 2-3 gallons per day- very dry skin, always had been really skinny even though I ate a TON. I began to never feel full. I would eat so much and be hungry right after. I was never satisfied. I felt shaky and unfocoused often. It was difficult for me to concentrate or keep a straight thought) There was a message on my phone when we got home saying to meet them in the hospital, that I was a type 1 diabetic. (bgs were 648)

  2. How did you feel at first? Scared? Guilty? Ashamed?
    Confused and scared. I didn’t really understand what diabetes was. Relieved. Very relieved that we finally found out what was wrong and that It wasn’t just me. Surprised at what normal felt like. I hadn’t felt that way in a loong time. I was kept in the hospital for 3 days (even though I didn’t have ketones) and the nurses worked very hard to make me understand how serious my condition was. I wanted to scream at them that I was not one of those people who overlook their disease and that I wanted to take care of myself and wanted to feel better. That they didn’t have to try to scare me into doing anything. I’ve never been back to the hospital for my diabetes.

  3. What kind of education or instructions were you given once you were diagnosed with Type 1 DM and by whom? (Nurse, Dietitian, Doctor?)
    I was put on a sliding scale and given a specific amount of carbs to eat at each meal by my endo and a dietitian. I used Lantus and humalog pens. As soon as I heard what a pump was, I asked for one. 6 months later I was on a pump and have been for almost 6 years.

  4. What is your daily routine (monitoring, shots, etc) from the time you wake up to the time you go to sleep?
    I wake up 6:30-7am test, have coffee and leave for work. Around 9am I have a cup of yogurt and some tea. Have lunch around 12pm. Snack usually around 3pm and dinner around 6pm. In bed by 10pm. I test before each meal and 2 hours after and whenever I feel off. Also when I wake up in the middle of the night. (average of 10 sticks per day)

  5. What are some situations that require you to change this routine? (Going out for drinks, traveling, work schedule, etc.)
    Sometimes I will skip breakfast or lunch. I’m not hungry often. When going to the bar or a party or staying up late. Travel, Being sick. Stress has a huge impact on my sugars.

  6. What are you concerned most about regarding your health in the future?
    Being able to have healthy children and take care of my family, not having complications. Being able to afford my medication.

  7. How has living with Type 1 DM impacted your relationships with others (romantically, friendship, family, children, etc).
    I really don’t think it has. I’ve always managed myself completely on my own so it was more a change for me than for my family or friends. Alot of my friends didn’t realize I was any different until I explained to them that I was diabetic and what a pump was. Everyone treats me the same. One of my best friends didn’t know I was until I’d known her for about a month (we hung out every day) and someone else asked me what my pump was. I have never been shy about it and am very open to questions. When I explained what it was, my friend said “I always wondered what that was. I thought it was weird that you wore an MP3 player ALL the time.” lol. Everyone knows I’m still a person, Just one who’s responsible for my own life. Maybe I’m more moody because of the diabetes, but I don’t think it effects my relationships with people.

  8. How has insurance (and dealing with insurance companies) impacted your life, health and general outlook?
    This part is horrible. I cannot get affordable health insurance. I think I’ve become a more cynical person because of it. The only insurance I can get is the state medical pool for people with pre-existing conditions and the premiums are killing me. My medical costs rival my rent and the premiums go up every few years. It is very hard to know that if I didn’t have diabetes I would be financially stable. And it is difficult not to feel guilty when my fiance is struggling with the fact that we’re so broke.

16

  1. What were the circumstances that led to your initial diagnosis? What is your story?
    I was a Cross Country runner in high school. After the end of season my senior year, I took a break from running (which means weight gan). That February I had strep throat during which I began to be very thirsty. I first thought it was the huge antibiotics they had me on. However, I continued being thirsty and hungry all the time and stepped on the scale to find I had dropped 20 lbs. Easter Sunday (mid-April), my mom made my grandpa test my blood glucose with his glucometer, which read “hi”. I was officially diagnosed the next day.

  2. How did you feel at first? Scared? Guilty? Ashamed?
    I felt scared, overwhelmed, and angry. As a person who always takes pride in being superhealthy, I was upset that it was ironic that I would never be “healthy” again.

  3. What kind of education or instructions were you given once you were diagnosed with Type 1 DM and by whom? (Nurse, Dietitian, Doctor?)
    I was sent to the hospital where I read the Pink Panther book on diabetes and watched some instructional videos. A nurse came in and taught me how to do insulin injections and test my blood sugar. A nutritionist came and taught me how to count carbs.

  4. What is your daily routine (monitoring, shots, etc) from the time you wake up to the time you go to sleep?
    Wake up and immediately test BGs. If good, take other medications (for hypothyroid, etc.). One hour later, test again, take a bolus for my meal and eat breakfast. Test two hours after meal and take a correction bolus if needed. Test before lunch. Take bolus for meal, and then eat. Test two hours later and take a correction bolus if needed. Test before dinner. Take insulin bolus, eat, and test two hours later again. Test before going to bed. If BGs are above 200 I will take a correction bolus. If they are between about 120 and 180, I let things be. If BGs are below 100, I will set a temporary basal for a few hours while I sleep. On a side note, I also test whenever I am feeling hypoglycemic and I will set temporary boluses if my BGs are good but still have a large amount of insulin still active. I also will wake up at about 3 AM when I go to bed with a blood glucose below 100 to make sure that it hasn’t gone too low.

  5. What are some situations that require you to change this routine? (Going out for drinks, traveling, work schedule, etc.)
    Exercise causes me to change this a lot. I have to up my BGs before exercising, test halfway or every third of the way through running, and then at the end. I set a very low temporary basal for exercising and have it continue about an hour past my workout as I am prone to delayed post-workout lows.

  6. What are you concerned most about regarding your health in the future?
    I am scare about complications, mostly with nerves, eyesight, and arthritis as apparently diabetics are more prone to early onset arthritis. I am both crafty and musical and don’t know what I would do if I couldn’t feel the tips of my fingers or move my fingers without pain.

  7. How has living with Type 1 DM impacted your relationships with others (romantically, friendship, family, children, etc).
    Well, I have a boyfriend who is also Type 1 so romantically it’s been good because we met because of our insulin pumps. Friendships have been unaffected except for the fact that my friends constantly check in while we’re out to see if I’m doing okay. My family has been very supportive, but it’s been hard on them- I know my parents feel guilty, but I have handled everything very well so I think they are finally coming to terms with it.

  8. How has insurance (and dealing with insurance companies) impacted your life, health and general outlook?
    I hate insurance companies. Not that they are bad, but they are a pain. I am scared because of the current job market. I’m a year and a half away from getting my undergrad and am hoping to get into med school, but if that doesn’t happen, I definitely have to find a job, because once I am uninsured, there is no way I can ever be insured again. Also, having a continuous glucose monitor would be so helpful but of course my insurance will not approve it because it’s "experimental"and not proven to help prevent future complications.

  9. Anything else you’d like to share.
    I cringe whenever I see commercials about diabetes because most of them are referring to Type 2. I wish that the general public would be more educated on the types of diabetes and that the people who make these commercials would be more specific about diabetes. I think I’ve only seen one commercial that states “Type 2” specifically.

17

Hi, first post on these forums but Ive been following for a while. Anyway as a student, understand how research goes and would love to help.

  1. What were the circumstances that led to your initial diagnosis? What is your story?
    I was 11 years old and had a common throat infection. I went undiagnosed for a while. It was thought the constant thirst was from the medication for the sore throat. I lost alot of weight and eventually saw the doctor again. Got the tests and that was it.

  2. How did you feel at first? Scared? Guilty? Ashamed?
    To be honest I didnt really know what was going on at first. I was only 11, and in the 5th grade. I had to go straight to Tulane Medical center in New Orleans to see a pediatric specialist, and stay for a week to learn about diet and insulin.

  3. What kind of education or instructions were you given once you were diagnosed with Type 1 DM and by whom? (Nurse, Dietitian, Doctor?)
    I saw a doctor (who I really didnt like. Looking back she was terrible with children. She was quite cold and didnt help any general “kid fears” of needles or being in the hospital. She actually said to not be “such a baby”.) I had nurses come in at meal times who gave me shots the first two or three days. I saw dietitians who taught me about food and shots. I think it was on the third day that I started doing my own shots, and from then on no one else did.

  4. What is your daily routine (monitoring, shots, etc) from the time you wake up to the time you go to sleep?
    I was on the shots for about two years, then the pump. I am currently on the pump and honestly, Im not that great a diabetic. My A1Cs are good and my sugars are generally good, but don’t keep a routine.
    I wake up, maybe I eat, maybe I dont. I go to class or work. I usually eat at uni or when I am at work. I usually spend time with the boyfriend (who is great with diabetes) and he reminds me to test before bed alot. Really, I don’t keep a routine. Ive been diabetic for so long I know when something is wrong.
    I usually figure my own insulin sensitivity and basal rates, as these types of things change through the month. I see a doctor at the diabetes clinic once every 3 to 4 months.

  5. What are some situations that require you to change this routine? (Going out for drinks, traveling, work schedule, etc.)
    When I go out for drink I do tend to test more.
    When I have exams I keep my blood sugars higher so I do not drop low in the middle of an exam.
    The current job I have is completely fine with the diabetes thing - I work with an autistic child and when he has dinner I usually eat as well.

  6. What are you concerned most about regarding your health in the future?
    I worry that I will have problems in pregnancy! I worry that if I move back to America I wont be able to afford health care!

  7. How has living with Type 1 DM impacted your relationships with others (romantically, friendship, family, children, etc).
    When I was in my earlier teens I had some boyfriends who were a little creeped out by it, and that made me a little nervous to say that I was diabetic. Ive been with my current boyfriend for 4 years and he has been great on the diabetes front.
    With my family, most of them know the general rules, but I think only my mom and sister know how to give an insulin shot. Really, it doesnt come up that much.
    As for friends I have never had any who were bothered by diabetes. One of my uni friends even asked if I could test her sugar recently, and I think thats pretty cool, it shows shes interested to know.
    My boyfriend even wore an infusion site for two days once! Thats the most amazing thing anyone has done within any form of relationship!

  8. How has insurance (and dealing with insurance companies) impacted your life, health and general outlook?
    In America, I suppose my health insurance was good. Well, it was good I had it anyway. Although, they will stop covering me when I turn 24 or when I finish uni. That makes me nervous. I don’t know what I will do after that for insurance.

I moved to the UK to study 1.5 year ago, and I am covered by the National Health System. All of my health care is free (insulin, test strips, general medication, doctor appointments…) and this has been such an eye opener! I think the NHS is amazing. I am currently trying to find out if the NHS will cover insulin pump supplies, which I get shipped from America still. Insulin pumps are a nonstandard treatment here, and I think I have to apply for special funding.

  1. Anything else you’d like to share.
    I dont understand why an A1C test in america is a whole blood test with loads of vials, and call back in a week for results.
    At the diabetes clinic I go to here in the UK, the A1C is done with a finger prick and results are given in about 20 minutes! Shocking! Just cant figure why all the fuss for the hard one!
    Also, I find that there is not alot of information on alcohol and recreational drug use in relation to diabetes. I study social sciences, and know that this is simply a fact of life and people do it. I am curious as to why there is little information other than the patronizing “dont do it” standpoint.
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  1. What were the circumstances that led to your initial diagnosis? What is your story?
    My sister was diagnosed as a type 1 when she was 5. The doctors initially thought I had it and we were tested together. I was fine at the time, but developed strong symptoms a few years later. My mom tested my blood sugar on my sister’s meter and it was really high. We figured it out from that so I tagged along to my sister endocrinology appointment the next day. The nurse did a finger test and it was again high so the doctor prescribed insulin.

  2. How did you feel at first? Scared? Guilty? Ashamed?
    I felt scared about how it would impact my life. The diagnosis came as a shock, one quick blood 30 second blood test in my living room and my life was completely different.

  3. What kind of education or instructions were you given once you were diagnosed with Type 1 DM and by whom? (Nurse, Dietitian, Doctor?)
    NONE… I will emphasize it because I am not exagerating or lying… I received absolutely no education or instructions. I was almost 13 at the time and was capable of understanding what was going on, but because my sister already had it, the doctor assumed my parents (who had gotten VERY little education themselves) would help me. That was it, a 30 second blood test, an insulin prescription and I was out the door.
    A few years later a nutritionist finally explained what insulin was, but it wasn’t until I was a college sophomore and a biology major at UCSD that I learned that I was actually supposed to aim to have consistent BG levels below 140, that I had an autoimmune disease, and that I was supposed to ‘count carbs’. All of this was taught to me in giant lecture halls, not a doctor’s office. I felt humiliated and angry. My friends in class would ask me questions thinking I would know more than them, but I was ashamed that I didn’t. For a long time I assumed that because I had diabetes, my BG levels were always irradic and that was the way it was. The concept that I was supposed to be able to CONTROL my ranges was completely new. I felt so angry at all my endos who never really took the time to find out if I ever really knew what was going on. They would as vague questions when I went in, but appointments were always rushed so I gave vague enough answers back that they accepted them. Even if I wanted to know more, I wouldn’t know how or what to ask because I didn’t know much of anything about my very complicated disease, much less how to communicate to a doctor, who is used to seeing patients who have spent days learning about management in a hospital, that I knew next to nothing except how to do a blood test and the basics of insulin dosing. Somehow I was lucky enough to never be hospitalized.
    I was smart enough to take Metabolic Biochemistry at a major science university, yet was always made to feel like I was stupid for not knowing what my medical team never told me. It is amazing to think about the difference 15 minutes with someone who knew what was going on back when I was diagnosed would have made to me. I understand that I just fell through a bad crack in the system, but being that I am the one now forced to live with the complications of years of poor management, that is a really bad excuse.

  4. What is your daily routine (monitoring, shots, etc) from the time you wake up to the time you go to sleep?
    I test when I wake up and make a correction if needed. As a student my days are all different. I basically test ~6 times a day and eat regular meals. I also use my bike as transportation because the exercise helps with control.

  5. What are some situations that require you to change this routine? (Going out for drinks, traveling, work schedule, etc.)
    I am a college student and my schedule can be extremely sporadic. I tend to just make sure I have everything I need with me so I can acommadate changes. Finals week is usually very difficult, but I just know in advance that I will have major blood sugar swings.

  6. What are you concerned most about regarding your health in the future?
    A cure never being found.

  7. How has living with Type 1 DM impacted your relationships with others (romantically, friendship, family, children, etc).
    My sister has it so she is supportive. My friends know I have it, but there are few I discuss it with.

  8. How has insurance (and dealing with insurance companies) impacted your life, health and general outlook?
    The stress of dealing with insurance can be almost as stressful as managing the disease. My company tries to get out of paying for just about everything and has really ridiculous rules. Also, I am graduating from college in June and the stress of trying to find a job with health benefits or another way of getting insurance is a lot on top of trying to manage a difficult disease.

  9. Anything else you’d like to share.
    Because I was given no initial education and everyone assumed that someone else was telling me about my disease, I had very poor control for a long time. I constantly felt belittled by my endo because I wasn’t in enough control or something, but I never understood really what was going on and was too ashamed to ask. It ended up being a long cycle of poor control, hating endo visits, and being confused in general about the whole process. It ended when I was taught about my disease in Biology classes in college, but it really just could have taken my doctor once just asking me a few direct, honest questions and actually taking the time to listen to my answer as opposed to running off to the next appointment or visit with the pharma company rep. It’s funny to think that with all of the improvements of diabetes care, none of them actually had much of an impact on me simply because they were never taught. All the money put into better care really didn’t do me any good because I was rarely ever treated like a real person with enough intelligence and strength to deal with a disease. Somehow I, the patient, got lost in the science.

Also, if you are in Boston, say Hi to Dr Denise Faustman for me!

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I was officially diagnosed in 1990. At that time they said I was Type 2. I went on oral drugs for a while, then in 1995 I went on insulin shots. I will admit I was not too compliant. When my father got ill I did not take my insulin at all. When he passed away, in 2006, I was admitted to ICU with a blood sugar of 740. That was my wake-up call. I have been on an insulin pump, and now Omnipod. WIth an insulin management system you have a little more freedom as far as eatting schedules. I can be a little more flexable. As I work in the medical field, I find people are more understanding of me and my chronic condition. It is hard for my husband because he at first did not understand when I had a bad day, flucuating BS, fatigue, etc. He has gotten better. I have a wonderful endocrinologist. I would advise anyone who is diabetic to see one. While my internist is great, I think someone who specializes in diabetic care understands me better. I went through training by diabetic educators at my hospital. They instituted a protocol in the emergency room for those of us with diabetes, so that the ER docs do not miss anything, and also how to respond if the patient is on an insulin pump. Insurance issues for me have more been about covering the cost of medications. You have to get creative. I have more of a traditional plan, so no drug co-pays. I found a mail-order service who accepts the 80% as payment in full and that has been a major help in covering expenses. Just within the past six months, I have been “upgraded” to being a Type ! diabetic due to medical changes. Being adopted, I really do not know family history. Had I always been Type 1? Was I misdiagnosed? At least now things are on track.

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  1. What were the circumstances that led to your initial diagnosis? What is your story? I became sick with the flu in the spring of 1964. I got better and then got sick again in less than 24 hours. I was vomiting and so very thristy. My parents took me to the doc and he did a urine test. I was immediately put into the hospital and for the next 12 days I was poked prodded and told nothing about what was happening to me.

  2. How did you feel at first? Scared? Guilty? Ashamed? Angry and terrified

  3. What kind of education or instructions were you given once you were diagnosed with Type 1 DM and by whom? (Nurse, Dietitian, Doctor?) My parents were given all the instructions and I just hd to follow what they told me to do… Again that was in 1964 when kids were not smart enough to understand what was going on…

  4. What is your daily routine (monitoring, shots, etc) from the time you wake up to the time you go to sleep? I am usually up between 7 and 8 AM. I take a glucose test first thing and get ready for my day. I ususally eat breakfast around 10 AM since I am a little slow in the motion first thing in the morning. I use the Animas 1250 pump so I am getting insulin all the time. If I am above 140 I take a bolus and check my bG every 2 hours during the day… Around 1PM I exercise for 45 minutes… of course, this depends on what my glucose is running… If it a day of lows I do isometric exercises and if it is running above 130 I do vigorous exercises. I am usually in bed around midnight.

  5. What are some situations that require you to change this routine? (Going out for drinks, traveling, work schedule, etc.) Basically I have hypoglycemia unawareness so if my bG is less than 100 I am home bound for the day. If it is above 120 than it is safe for me to go do my running around town or grocery shopping. I have had to stop working as a registered nurse in hospital setting because of my hypo unawareness…

  6. What are you concerned most about regarding your health in the future? Although I have diabetes since I was 10 years old I worry that eventually I will not be able to take care of myself and will have to be put in a convalescence center or nursing home. I also fear losing my sight as I love to do arts and crafts and read.

  7. How has living with Type 1 DM impacted your relationships with others (romantically, friendship, family, children, etc). I have been fortunate to be married to a man who has become my watcher… he notices when my bG is starting to drop before I do and he will ask me to check it there are times this irritates me but I than realize how fortunate I am to have someone who cares so much about me. I was never blessed with children… I was pregnant one time but the child died after 3 months gestation… My family does not live near me so they do not understand this disease. My parents did but my siblings don’t have a clue about what I have to do to keep everything in check. I am basically a loner I have internet friends but I have no one that lives near me that I call a friend.

  8. How has insurance (and dealing with insurance companies) impacted your life, health and general outlook? Maybe I am blessed but I have had excellent physicians who fought for me when I needed to have more supplies than the insurance companies allowed. So insurance companies have tried to tie my hands by limiting the number of times I take a blood sugar but my endocrinologist and his staff have made the necessary calls and informed the companies that I needed the 300 strips every month… The one thing I am angry about is not being able to get decent life insurance. I have one policy that my parents got for me as a child but it will never pay for any or all bills that I may have when I die. My general outlook on life is not affected by insurance companies because I refuse to allow bean counters to give me a bad day.

  9. Anything else you’d like to share. If anyone in this discussion group ever has a paitient who asks for little but seems to be not doing well spend some extra time with them and ask them what they need and listen to them… Most long term diabetics have a fairly good handle on their disease… fight for them when they are being refused treatments that you know will assist making their life better and give them encouragement each time you see them… Thank you for allowing me to participate in this study. Karen M.