Hi, I am new and curious it people could tell me what the first year is like. I am very anxious to learn. I was diagnosed 1/19/16 but I didn’t accept until October. So my year is just starting.
Thanks
Well Josh I am finishing up my first year and it was interesting… LOL yeah it kind of sucks that you ignored it for as long as you did. This is one disease you do not want to let loose. It’s all about control and once you find it it’s very manageable but it will drive you insane at times. You will be high, you will be low, you are doing everything right yet your levels are all over the place and there’s no good reason why. Consistency is the key word you need to get a good schedule you need to eat right, it is key to exercise, I cannot stress this enough. When I first found out, I exercised all the time and then i stopped. I live in Vegas and gets very hot, it’s a desert that’s what happens. However, I can definitely account my levels being 20 to 30 points higher since I stopped working out. Lucky for me I got into a study right away and I would advise you doing the same if you can afford a little bit of time out of your schedule. There’s a security in knowing that you have some of the top doctors in the field taking care of you every month, not to mention you get free stuff which is cool if you don’t have insurance like myself. I don’t know how old you are, I’m 46 so I’m in the top tier of people that get it and nobody knows why, but you can’t think about that. Why is not a question you can ask yourself anymore. Ask yourself what, as in what can you do to keep your sugar’s down because if they run too high you will more than likely run into some serious problems and I’m not talking in the distant future, it could happen very very quickly. My A1C is between 5.7 and 6, however I am experiencing, after the first year some side effects with my eyes and starting to get some swelling in my ankles if I wear socks that are too tight. Speaking of that get yourself some good diabetic socks not only are they Ultra comfortable anyways, but they will definitely help you when you have to stay in your shoes for hours. I would also recommend doing the pen needles and using the highest gauge, 32 or above, that minimizes any discomfort you may get, you barely feel it most of the time. Make sure you have a good endocrinologist they are not all the same make sure they are attentive to your needs it can be very busy and rush you in and rush you out. You don’t need that in a doctor. Make sure they figure out your insulin to carb ratio, you get your blood tested regularly make sure you get your eyes checked as soon as possible. Believe me every single one of us can understand why you avoided it is long as you did. The hardest part about accepting this as a disease is when you get yourself in check you don’t feel sick you don’t look sick you don’t act sick and you can convince yourself that you’re not sick. The bottom line is your body is slowly killing itself when beta cell at a time which means a plethora of other diseases that can follow so it is life and death every single day. You’re going to get sick of telling people I’m not type 2 I’m type 1 and then explaining the difference. You’re also going to notice, well you probably already have, there’s a diabetic commercial on TV every 10 minutes. It’s amazing I never noticed that until I got it and it shows you how prevalent this disease has become and is only getting worse. Learn as much as you can, knowledge is power and the more you know about this the more you can prevent what could be inevitable if you don’t. The other thing I didn’t realize what happened is I lost about 30 pounds in 8 months and I gained back about thirty pounds in about 2 months. Your body is going to start working properly again and storing fat and moving sugar around the way it should and that weight will come back faster than you can snap a finger. Anyways I could probably go on another hour I hope this helped a little bit and feel free to ask anything there are so many knowledgeable people on these sites and I’m sure you’ll be getting a lot more responses than myself. So take care of yourself and I mean that take care of yourself, because nobody’s going to do it for you. Stay consistent and eventually it gets easier, however, it doesn’t mean you like it anymore.
There is a very big hope coming to T1Ds in a very long time. The first of numerous artificial pancreas (AP) developments has been okayed by FDA for release in this coming Spring, by Medtronic. I suspect Medtronic got in first because they are in bed with FDA, as are most large medical companies. BTW, AP is also known as closed-loop controlled insulin pumps.
Anyway, it will allow the best control possible but is still limited to good tracking of food calorie intake. You must decide how many calories, especially carbohydrates, you are going to eat each meal, and program that into the pump. It is also important to develop a fair degree of regularity of eating times, caloric intake, and exercise. These really help you learn your body’s specific response to diabetes. You must also learn about the effect of your insulin sites on how long it takes for insulin to be absorbed. Generally, it absorbs faster in more muscular tissue than in fatty tissue. You’ll need the help of a diabetes educator on site location and rotation, and on how to use a pump.
Pump warranty generally lasts 5 years and insurance companies won’t pay for a new one till your warranty runs out. So I would wait on getting a pump till Medtronic puts the AP on the market in the Spring.
Old myths about diabetics having no control of their health, and shorter life spans, are things of the past. You still must control your blood sugars, try to keep an A1C around 6, and live well. Watch out for fast acting carbohydrates (carbs) because it can be hard for insulin to match its profile. Fast carbs hit fast and then drop a little more slowly. It is good to program that amount into the pump. Protein carbohydrates kick in after one or two hours, and fats in four to five. It is not easy to program all that into the pump. Most pumps have a delayed bolus in addition to the regular bolus, so it tells the insulin how much to release over the time period you set. The APs will take some of that work off our hands, but it still needs to know the calorie profile of your meals (how much carbs, protein, and fat you are eating). A good quality kitchen scale, an app for food calories of all the foods people eat (like Calorie King), and a set of weekly menus will be really helpful. If you like to cook, it will improve your control versus eating out, because you never know what and how much you are eating. When you cook, you can learn the habit of preparing meals that are good for diabetics. In general, you want plenty of protein and slow-acting carbs, and some fat, versus a diet of fast carbs. A diabetic dietitian can help.
If you don’t have an Endocrinology physician, get one. A must for diabetics.
Hi Josh,
I have had Type 1 for over 50 years. I was only 2 1/2 when I was diagnosed, so I don’t remember much about my first year other than my mom telling me I couldn’t eat things like fudgecicles anymore and being very upset by it. Thankfully, diabetes treatment has moved past that kind of thinking!
When I was in my teens I had an endocrine (doctor) who told me I could eat and/or drink anything I wanted as long as I was careful about it. I was about to turn 19, the legal drinking age in my state at the time, and he taught me a lesson I have used ever since. He said that whenever I consumed anything new to check my blood sugar 2 hours after and again 4 hours after so that I could see how it affected my sugars. Then I would know the next time how to adjust my insulin to cover it. For me this has worked and has helped me keep very good control of my blood sugars.
I’ve never owned a scale, as “davyboy” suggests, although I think my parents had one when I first started out. The main thing is to get use to checking your BGs (blood glucose’s) frequently until you get a handle on what and how much you can eat. You don’t say how old you are or if you have Type 1 or Type 2 diabetes. Also, if you need to lose weight. All of these may affect what and how much you can eat.
Listen to what your doctor has to say. Get with an Endocrine, if you don’t already have one, and see a diabetes educator/nutritionist if you can (not all endocrine’s have one of these, some do it all on their own). Also, contact your local JDRF and ADA offices for referrals and information. They often have mentors who you can speak with and ask questions, these are people with diabetes who are there to help!
Good luck, and don’t hesitate to keep asking questions, it’s the best way to learn!
Pam K.
T1D 52 years
Thanks Pam. I was 42 when i got it, 43 now. I have lost over 70 lbs this year so i have been trying to maintain and add some weight. About half before i found out and the other half after.
Josh
hi @joshm2_99,
the first year can stink.
the first year you get to stick yourself with all kinds of needles and be overwhelmed with the new language the new rules, the new doctors, the new diet restrictions, the new bills, and the new feelings of highs and lows. It can be exhausting. For me it was the year I wished away, waiting for that cure everyone said was just around the corner. hate to be the bearer of bad news… it’s not, in fact a cure is not anywhere for at least a 20 years, due to zero t1d “cures” in clinical trials right now.
Physically as your body makes less and less insulin, control becomes more tricky. esp because you got it later, your body may make insulin for another year. eventually you’ll make none and tight control can take a lot of effort.
mentally, and perhaps most cruel, you have to wrap your head around a chronic incurable disease that you cannot bargain with. In fact, the longer it takes for you to completely accept your loss of good health, the harder it’ll be to gain peace with it. many people with t1d suffer from some kind of depression and in my opinion, it’s because they are at war with themselves. There are ways to protect yourself, including helping others, talking about it, writing about it, participating in things like this board, etc.
if you can make the acceptance hurdle, the drudgery eventually becomes more routine and less exhausting, and you will develop a new sense of blood sugar and what foods, activities, and amounts of insulin will do and feel like. good luck to you.
Hello every one here & specially JOE,
Good afternoon from Lahore, Pakistan!!!
I have been mindlessly scrolling the site for the last 30 minutes & luckily see this topic. Though I have nothing to add in my mind right-now, but important thing to say that whatever JOE had told is more than 100% correct, specially what he had written in his 2nd last para is really heart touching & 100% close to the reality of diabetic routine life.
I just need to thank JOE for his wonderful observation, remarks & spirit of helping others here.
I have been learning a lot from JOE’s responses, even more than from a regular healthcare professional.
Thank you so much JOE, keeping doing it please. We need you much here & all others having the same/or similar spirit & doing the noble cause of helping others as I have been start believing that only more senior /more knowledgeable diabetic can help you better than any other one, because most probably he had already faced & went through all the probable stages of diabetes and know all the skills how to handle them effectively & practically verified all the ups & downs.
Great thing for the others (comparatively new to it) to learn something from their severe/bitter experiences, but real, of the senior/knowledgeable diabetics.
Good Luck to all of you!!!
Kind Regards,
Munir Nara.
(Lahore 42C, 1230 Hours)