I fail at being a diabetic...new person here

Type 1 and LADA New to Type 1 Diabetes
1

Hello all! I've been sitting here for the past ten minutes trying to think of how to introduce myself. I'm sorry that this came out so long... First off, my name is Jen, but I've been using Winter as my online handle for so long it's actually become a nick name for me. I'm pretty sure I'm a type 2 diabetic and I was diagnosed early last year. It was the worst New Years ever, but I have diabetes on both sides of my family. In some way I almost expected to get it, and I'm still ashamed that I didn't work harder to prevent it.

I'm only just now trying to take control of things and learning how to take care of myself. Around the same time that I was diagnosed last year, my grandpa developed diabetic neuropathy. Without getting into too much detail, he ended up moving in with us and everyone's focus went into taking care of him and controlling his diabetes. I hadn't been given much information by my doctor, so I had been relying on my family to help me adjust. When I didn't have that support anymore I panicked and just sort of...shut down. I'm pretty sure I did try for a while but looking back...it was just sad. I had absolutely no clue what I was doing and no one to help me. You would think that seeing what diabetes can do first hand with my grandpa would keep me motivated. Nope. Apparently I don't do well with negative reinforcement.

I ignored it to the point where a few weeks ago, on the rare days I decided to check my sugar it almost always said HI, which I figured meant it was 500 or higher. I got sicker and sicker and eventually sort of snapped out of my stupidity and started doing some serious research. I couldn't take another day of super high blood sugars, being constantly hungry and wondering if I'd even wake up in the morning. One day I just demanded that someone take me to the ER, and I was only there for a few hours but I managed to snag a prescription for 500mgs of Metformin twice a day, with refills to last me the next three months.

My sugars are still running pretty high, with fastings being around 230, but I do feel a bit better. It's a little disappointing though. I've been working the past week to keep my carbs in check (maximum amount is 50g per meals, 15g for snacks) and I exercise several hours a day. I know with Metformin it takes a while to kick in and it's silly to expect immediate results but... I really need to see a doctor. The one time I saw a doctor last year, all they did was give me a diagnosis and a prescription before sending me on my way. I'm worried it's just downright not going to work and I'll be taking the medicine for nothing. What if I'm not even a Type 2? That would be embarrassing but my sugars have been so stupidly high that I wouldn't be surprised. The doctors around here are so high and mighty. I've been put on a cancellation list, and can expect an appointment 'possibly' within the next two weeks. Yay.

I joined because... I'm really completely by myself in this. My family never did step up to help me and I just had to accept that and learn to help myself. I really am trying, but it's hard because I have no idea if I'm doing the right things here. It's so discouraging to workout and count carbs all day, only to see it still creeping up to higher numbers. I can deal without sugary processed foods, but the fact that I have to plan in advance to eat a stupid apple is and has been enough to reduce me to a sobbing mess on my kitchen floor. It's not a pretty sight. The only other diabetics I know are my dad and my grandpa. My dad and I are not on speaking terms, and diabetic talks with my grandpa usually turn into him lecturing me going, "You see me!? Is this what you want!? Let me spend the next five hours describing my excruciating pain." It's not very inspiring. Quite the opposite really. I have seen diabetic complications first hand (everything from neuropathy to gangrene...) and scare tactics do just that. Scare me. I don't want to focus on the bad things that will happen if I'm negligent. I want to focus on what I can do to make things better NOW.

So yes. In short (kind of late for that I realize) I am here to get some new perspectives, advice and maybe make a few friends who actually understand what I'm going through. My friends try but... you know how non-diabetics can be. On a lighter note, I was surprised to see how many college-age folks are on this site. I'll be honest, I was starting to think diabetics under the age of 30 didn't exist haha.

2

Welcome, Winter Jen! Glad you found us.

First off, no guilt, no shame, no self-recrimination. Nothing you could have done or not done to prevent diabetes, so stop beating youself up. Past is past & looking forward is what’s best. You’re taking care of yourself now. Big hugs.

Even with family support, we really are in this alone. We all learned on our own through trial & error. You will also. Much support & kind people in this community to answer any questions. There’s a wealth of knowledge here you can search on any topic. That should keep you busy:)

I highly recommend Jenny’s site & book www.bloodsugar101.com. I feel fortunate to have stumbled on her wonderful info shortly after I was diagnosed. Put things into focus for me when I was overwhelmed, frustrated & in tears.

You may be a T2, or you could be a T1 or LADA. Doctors assume T2 with adults & people are misdiagnosed based on age/weight. Fact is that there are adults much older than you who are diagnosed T1. It’s not a disease that just strikes in childhood. I hope you can get a doctor’s apppointment soon. Insist that the proper tests are run. C-peptide & GAD antibody panel determine diagnosis. In the meanwhile, lowering carbs will help. Log all your readings to bring to your doctor.

3

Hi Jen, and welcome! My name is Dawn. I am a mother of a 5 year old type 1 diabetic child. I dont have diabetes myself, but caring for my child who does have it, I understand the emotional aspects, atleast in part.

First thing I want to say is…

YOU CAN DO THIS!!! I have all the faith in the world that you can do this!

Secondly, talk to your PCP about getting a referral to an endocrinologist. Once there, they will prolly do some bloodwork on you, and maybe send you for “diabetes classes” to teach you more about your condition, what type of options are out there for you, maybe tweek your meal plan and medications some, etc. That would be my first step if I were you. Ive talked to other ppl with Type 2 diabetes, and honestly, many of them have told me that once they started seeing an endocrinologist for their diabetes management needs, instead of their PCP doctor, they’ve noticed a HUGE change in how their blood sugars have been (for the good!).

As far as the frustration of counting carbs… I know. It sucks. I have to do that for my 5 year old son all day, every day, for the last 2 1/2 years now. It sucks, but, over time, it will become a normal part of your life, and you will eventually get to the point where you remember how many carbs are in some things without having to portion them out all the time.

Diabetes sucks, and sometimes no matter how hard we try to get blood sugars in range, or keep them in range, diabetes will throw us a curve ball to knock us off balance, only to stand up and say “what the hell was that?!”. But, diabetes is a part of our lives now, and all we can do is take it day by day, moment by moment, number by number, and do the best we can. Just remember. Dont let your diabetes rule your life. It is manageable. Do your best. Seek out an endocrinologist. And live your life, despite your diabetes! Good luck hun! If you need a shoulder to lean on, you can find me on facebook if your on there. www.facebook.com/dawnlidwell or on twitter at www.twitter.com/T1DTeamLenny

I also have a blog you can check out also, though I must warn you, it talks more about living with type 1 and more information regarding type 1 than it does type 2 (just because thats the type I live with and know the most about). My blog is Sugar Free Candyland

Good luck hun!

4

OK, first thing: take a deep, deep breath. You’re in good – no, excellent – company here. People are going to help you, I promise. You are NOT by yourself here – you’re with us. We’re all diabetics here (or the family members caring for diabetics) and we all know that there’s no such thing as a “perfect” diabetic. We all have things we do better at and things we really need to work on. That’s completely normal. We’re human, right?

I am reading everything I can get my hands on, and it’s helping me to not feel so panicky. There is a steep learning curve, but we can do it. People here have suggested several excellent books. I’m currently reading “The Diabetes Answer Book” by my new doctor, David McCulloch. I’m also reading “Diabetes 101” by Jenny Ruhl and “Using Insulin” by Walsh, Roberts, Varma and Bailey. Next up is “How to Think Like a Pancreas”.

With diabetes, as in life, knowledge is power – also comfort, security and hope.

The kind of knowledge we need isn’t just “OH MY GOD YOU’LL LOSE A FOOT IF YOU DON’T BEHAVE” but rather the what, when and how of maintaining excellent control.

The first step – something you can do for yourself right now – is to start keeping track. Just make it a habit, like brushing your teeth, taking a shower, changing your undies. Make neat records of each day: what was your blood glucose when you woke up, before eating anything? What was your blood glucose before you ate lunch? Before dinner? Right before you went to bed? Write these down along with everything you eat. Take a picture of your food with your phone and log it later if you’re in a hurry.

When you go in to see the doctor, have these records with you. Why? Because you need to learn about your own diabetes and your doctor will need these records, too, in order to decide which tests to order, which medications to recommend, when to schedule your next visit, etc.

My doctor said that it’s a good idea to take TWO readings after at least one meal. Dinner is usually the easiest. Take a reading one hour after dinner and two hours after dinner, at least a few times per week between now and when you see your doctor. This can help you see how high you’re spiking after eating and how well it comes down again.

No matter what else is going on in my life – whether I’m high or low – eating very well or all the wrong things – exercising or being completely sedentary – sleeping or insomniac – generally well or fighting a cold – my record-keeping tells me and my care team what’s up. It’s the first step towards gaining control.

Ask to be referred to a Certified Diabetes Educator. She or he will want to see your records, too. They’ll have a lot more time to help you than most doctor’s will – perhaps a one-hour appointment each time, rather than the just 5 to 15 minutes that most doctors give.

You’re not a failure. This isn’t a test where someone is going to give you an A or an F depending on your numbers. You can’t “flunk out” of diabetes! Develop a HEALTHY curiosity about your diabetes. Think about it more like a scientist and less like a judge and jury. If you can stop thinking of yourself as a “good” or “bad” diabetic but just as a person LEARNING how to cope with diabetes, it won’t be so emotionally devastating – and you’ll be less likely to burn out, go into denial, or stop taking care of yourself.

I have this really neat weekly chart that I got from my HMO. I scanned it into my computer and print one each week. But you don’t need anything elaborate. A simple spiral-bound notebook works just as well, or just loose-leaf paper that you can staple together at the end of each week or keep in a binder. Just start keeping track now for yourself and for your next doctor’s visit.

Date:
Time of test:
Pre-breakfast (Fasting) blood glucose:
What I ate:

Time of test:
Pre-lunch blood glucose:
What I ate:

Time of test:
Pre-dinner blood glucose:
What I ate:

Time of test:
One hour post-dinner blood glucose:

Time of test:
Two hour post-dinner blood glucose:

Time of test:
Pre-Bed blood glucose:

Just start there.

You know this but it bears repeating: The sooner you get your average glucose readings closer to the normal range, the better you’ll feel RIGHT NOW and the less you’ll need to worry about those scary complications. Right?

5

I’m totally clueless about T2 so I am not sure what to say about that. I was astounded to learn that many of you all exercise all the time and if you are taking steps to get things under better control now and great control in the long run, I think you are doing a good job doing what you have to do. Although I find it really annoying that the medical industry can’t take care of your needs faster.

The website is an excellent ‘fill-in’ though. There are a lot of really smart people here who should be able to provide a lot of answers you may not get from your doctor/CDE/ dad/ grandfather. Plus, if they, particularly yr family, don’t believe you, you will have it in writing and can whip out your phone and show them. Unless they have bifocal issues or whatever, in which case you may want to use your computer?

6

Welcome Jen. Many of us have felt alone and isolated with our diabetes, much like your experience. You will find lots of help here and also people that you can talk to who share a lot of what you are going through. Many of us believe that diabetes is a quite manageable condition and that you can take responsibility and with proper diet, exercise and medication lead a long, healthy and happy life.

7

Hello Jen,
First of all…welcome! I am new to this site also. I was diagnosed with type 1 last year (a couple months before I turned 30). I agree with the others that you should try to find out if you have type 2 or another type. I am also pretty much going through this by myself, I don’t know any other diabetics. I am in graduate school and have no health insurance.

I was diagnosed at a free clinic (I went there for something completely unrelated and I found out after they ran some standard blood tests so it was a huge shock). The doctor prescribed me some Metformin which didn’t do much and then some insulin but I basically had to figure out how to use it on my own. Someone recommended the books Think Like a Pancreas and Using Insulin to me and they were extremely helpful. I have gotten my blood sugar under control even though I may not be doing it “right”, it seems to be working.

These forums are really helpful, whether you are looking for advice or just support form other people who know what you are going through. Good luck!

8

Everybody else has already said all the things I wanted to as I read your post, but I just want to add my voice. You are not a failure, you are trying your hardest and you need help. I’m sad to hear your family and your doctor are not good support, but, though we are strangers on a website, we aregood support. I came here in 2007 when I had been misdiagnosed type 2 and didn’t know why my numbers kept rising. Here I realized I was actually Type 1 (LADA), and as for the age thing? I was diagnosed at age 58! I have kept coming here in the two years since and when something about diabetes is confusing me or making me feel overwhelmed, I don’t go to family (they care but don’t understand), I don’t call my doctor, I come here.

I’m sorry you have been so sick; I’m very lucky I’ve never been really sick from diabetes, only peed a lot and lost a lot of weight (which was a good thing!). You need help. I second the idea that you should see an endo, not a pcp, and that you should be tested (antibody and c-peptide) for type. My guess is that you are type 1, but I’m not a doctor. When you get the right treatment, and learn how to manage your diabetes you will be amazed how good you will feel. Meanwhile, it’s Valentine’s Day, so remember to love yourself and not blame yourself for getting a condition called diabetes.

9

Oh, goodness, I can’t believe I forgot to mention Dr. Bernstein’s book. It’s like my diabetes bible. ;0)

It’s a bit of a tough read at first (he’s brilliant and includes everything, which can be overwhelming) but I completely support his approach. It works.

10

welcome to the site. it’s a great resource w/ a lot of smart/great people. but first you gotta go see your doc and be sure what you’re dealing w/ if you’re really a T2 or T1 and then get educated about what you can do to take control of your sugars. carb counting can suck but you still can enjoy life and eating.

11

Winter,
Sorry you’ve had to join our little club, but you’ve come to the right place for help. Spend some time going through old threads and exploring some of the groups.

Diabetes is a do it yourself disease more than almost any other. This means you will need to educate yourself and develop a plan of action. I look upon this as a good thing because more so than almost any other chronic condition you are in the driver seat, you have a tremendous amount of influence on your outcome. Be proactive, your Dr. may or may not be of much help.

Things that helped me:

The BloodSugar101 website be sure to check out the “How to lower your blood sugar” link. This little science experiment will tell you what foods you will need to give up or limit to meet your goals.

The book “The First Year: Type 2 Diabetes: An Essential Guide for the Newly Diagnosed” by Gretchen Becker A good overall view of whats going on with your body and your treatment and diet options.

The book “Dr. Bernstein’s Diabetes Solution: The Complete Guide to Achieving Normal Blood Sugars” by Richard K. Bernstein This book recommends a low carb program. Whether you wind up doing low carb as Dr B. recommends or not you can still learn a lot from this book. Many find they can meet their goals being a little looser than this book recommends. Others follow this program to the T and swear by it.

Many of us T2’s find we need to limit our carbs. This site is a tremendous resource for recipe and meal ideas to keep your meals interesting. Remember whatever program you decide on, you will need to keep it up long term. In addition to several low carb recipe groups check out the Bernstein Group which has some good recipe links and ideas.

Good Luck!!!

12

Hi Jen: As others have mentioned, it is important to get a correct diagnosis so you get appropriate treatment. A large number of adults who have Type 1 diabetes are misdiagnosed as having Type 2 diabetes, just based on age and the myth that Type 1 diabetes is a childhood disease. Check out my blogs on misdiagnosis, including Bill of Rights for People with Adult-Onset Type 1 Diabetes Or “A Manifesto for the Misdiagnosed”. The gold-standard test for Type 1 diabetes is antibody testing (glutamic acid decarboxylase antibodies (GADA), islet cell antibodies (ICA), and insulinoma-associated (IA-2) autoantibodies), and the c-peptide test is also useful but not definitive. If the person is antibody positive, he/she has Type 1 diabetes and should be treated with exogenous insulin. If in fact you have Type 1, nothing but insulin will really work to get your blood sugar in control. Best of luck to you, and use TuD to get the support you need.

13

Welcome! Jen
You are in the right place on TuD for when you need a pick-me-up, to learn something about D, to make new friends, laugh, cry or just vent. The PWD (People with Diabetes) here are non-judgmental, caring, loving and fun! For me I can identify because my mother is a diabetic WAY out of control, my dad died at 47 because of heart problems and Type 2. Me I was diagnosed at 21 in 1995 been on insulin since 2000

I have said this before - Living with D is not something you have to do alone. Not now, Not never!! I am very glad you are here on TuD!!!

14

Oh my gosh. Thanks everyone for the welcomes. I was expecting maybe one…three replies tops. Makes me feel like I made a right choice in joining. I’ve been very picky about all the diabetic communities I’ve seen so far. I haven’t even finished writing down all the books and websites you guys have recommended, but I’ll definitely be checking those out. When I was first diagnosed I pretty much avoided most diabetic information. Out of sight out of mind I guess. It’s still kind of stressful doing research. I need to do it in small doses or I get overwhelmed and start craving carbs something fierce. It’s not a normal reaction to stress, but I’m trying.

I’ve been thinking I’m either Type 1, or I need a higher dose of Metformin, because so far nothing has really been working. You would think losing a whole bunch of weight and changing my eating habits completely would do the trick, but nope. Not much time was spent on my diagnoses. I actually went in because I randomly passed out one day, and they did a bunch of tests on my heart for a week straight. I had to wear a heart monitor for three days… the blood test was just something just cause, and that turned out to be the most important part of that whole week. It’s actually an endocrinologist I’ve been trying to see, but I’m still on a cancellation list. I mean I guess that means he’s good at what he does, but it’s a bit annoying that I can’t just see this guy when I need to.

15

Oooh. I think I’ll start using that. Keeping records has been the bane of my existence this past week. I’ll get done with testing my sugar and eating, then I’ll sit down to watch a movie and go,"…well shoot, I forgot to write all that down…I’ll do it later!" I think if I had a ready made chart that I just needed to fill out, it’d be easier to remember. I’m not even sure why I didn’t think of this earlier. It seems sadly obvious now. Ah well. Better late than never I guess.

And totally right! Even though the metformin hasn’t had the super dramatic results I was hoping for, just the fact that it seems to be keeping me out of those scary 500 ranges has me feeling somewhat better already. Now if only I could get fastings under 200, that’d be swell.

16

Oh Jen - your words just moved me so much. Don’t be so hard on yourself - and you know what? You’ve come to a great place where we’re all living with this roller coaster ride with diabetes! So sending you a big (((((( group hug )))))) and don’t give up - hang in there - come here for encouragement - a laugh (we don’t only talk about diabetes here) - and hopefully soon you’ll be seeing someone that can help point you in the right direction.