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.

Tags: 1, Diabetes, Education, Lifestyle, Medical, Student, Type

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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.

7. 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.

8. 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.

9. 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.
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.
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.
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.

9. 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.
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!
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.
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.
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 :-)
1. 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.

2. How did you feel at first? Scared? Guilty? Ashamed?
i would say all of the above with a healthy dose of p***ed-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.

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 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.

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, 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

5. 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)

6. What are you concerned most about regarding your health in the future?
the usual, although i do think that prevention is key

7. 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.

8. 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.

9. 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
1. 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.

2. 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.


3. 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.

4. wake up CHECK/INSULIN. work lunch CHECK/INSULIN 2hrs later CHECK/INSULIN SOMETIMES. dinner CHECK/INSULIN 2hrs later CHECK/INSULIN SOMTIMES. bed CHECK/INSULIN

5. 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

6. 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...

7. 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.

8. 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.

9. 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.

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