New to T1D

Newly Diagnosed
#1

Good morning/afternoon (depending on where you live), Jonathan here, first time poster and new to the T1D squad!

I received a diagnosis for T1D back on in January, in fact it was 2 days before my 30th birthday (not the early birthday gift I would have expected…). Back in November of 2020, I unfortunately caught covid, fortunately, it was a mild case. Once I got over the main symptoms, I had lingering dry mouth, an unquenchable thirst, extreme urge for sugary foods, and waking up multiple times a night to pee. Being the stubborn person that I can be (at times), I waited 2 months before seeing my doctor. I went to the doctors office, got some blood drawn and was called back the next day to get my diagnosis. My blood sugar was 460 and I had an A1c of 14+.

Since then I have found an Endo (first visit was 1 week ago) which I when I was prescribed a Tresiba and Fiasp, but prior to that I had been on Novolin 70/30 blend for over a month and had a hell of a time trying to manage a semi constant BG level. Since starting the basal/bolus, I have had better, more consistent numbers, but my biggest fear is being able to go out and eat at a restaurant confidently where I can’t see how many carbs are in my meal and how extra fat/protein prolong the rise of BG levels. It is all quite overwhelming and at the moment, even eating at home can be tricky, which could be attributed to maybe being in the honeymoon phase (I should know on Wednesday when my lab work gets back to my Endo), the fact that I’m bad at carb counting, or my sliding scale ratio is off… I use my fitnesspal to figure out my caloric intake and it gives me an idea of the amount of carbs I ate, but I’m just hoping before long I get more comfortable being able to go out to dinner with the in-laws/family/friends without having an anxiety attack, or being able to go fish, hunt, play sports without worrying my BG levels are going to plummet, I do have a Dexcom to monitor my levels, but I feel I watch it way too much!

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#2

Hello Jonathan @Ringler91 !! Welcome to the community. As much as I never wish T1D on anybody, there is such a large community out there. I had a similar situation when I was diagnosed, three days before my birthday (three years ago) and right after I had bronchitis. I am 18 years old now and coming up on my fourth year. It is hard to get a grasp on everything. In all honesty, It will be frustrating in the beginning, and truly even after 3 years, I am still frustrated sometimes. Diabetes is very trial and error and every single day is going to be different but trying your best to carb count and be active and still doing what you enjoy is so important. I still use finger sticks and insulin shots so I do not have a lot of knowledge about Dexcom, but I do volunteer every year for my local JDRF Chapter. Some people say the best way to stop looking at it all the time is to set alarms and unless an alarm goes off (for highs or lows or whatever) then put it aside and focus on having fun. Do not let it stop you from enjoying activities that you used to enjoy. That is obviously easier said than done sometimes, but just trying to put it away for a few hours of fishing, hunting, playing sports is absolutely okay. That does not mean ignoring your care of diabetes it just means that those alarms will warn you so it is okay to close your phone and put it away as long as you can hear it and stop watching every single blood sugar reading. Allow yourself to have fun and enjoy life. Otherwise, it can become so much harder. You will be so stressed out about every blood sugar and if you’re doing enough. I have had weeks, even months where I am so stressed out about diabetes and truly, the stress does not help. Stress can have huge effects on your blood sugars!!
On the topic of food. It does get easier. I recommend that you measure everything in the beginning and then you can slowly start to recognize portion sizes without measuring. That being said, if you notice increases in blood sugar with certain “carby” foods, make sure to continue to measure those. You can go out to eat. You can find almost any restaurant’s nutrition facts online and something I recommend is that you look at the menus and carb counts before you get to the restaurant. Already knowing what you want to eat and how many carbs it has can be very helpful in dealing with the stress of eating out in the beginning.

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#3

Thanks for the words of encouragement! The last month+ has been very overwhelming because I want to hurry up and learn and know everything ASAP, but I’m finding out that it’s a “learn as you go” kind of thing. I started out on Novolin 70/30, poorly diagnosed/prescribed by my PCP, so I have “ptsd” of dosing/eating from the first month of this journey, and now that I’m on a basal/bolus regimen, I feel I have more control and don’t have to eat like crazy! But, now I feel I have to watch what I eat more so that I don’t spike myself or run high from miss calculating.

#4

In all honesty, there is no such thing as a perfect diabetes treatment. I think the biggest thing is watching trends. It is about finding what works for you and as life changes/as you age/ starting a new chapter in life, etc. diabetes will also change. Something I recommend, if you are open to it, is finding a local support group on zoom right now and/or finding a therapist to talk to. Sometimes they teach you how to be mindful and help you to get rid of that overwhelming feeling and the “PTSD” from the poor diagnosis. I know it is not for everyone, sometimes it is just easier to talk to those who have it or a mental health professional to help you pick apart your overwhelming feelings and help you to make habits to cope with them. Remember there are 1.61 Million people in America alone who have diabetes and you are not alone. Hang in there!!

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#5

First of all Welcome @Ringler91 and welcome @fieldiez to the forum and the club no one wants to be in. There are several hundred years experience here, but we try not to give direct medical advice. I hope you both feel free to ask about anything.

Restaurants. I travel for work and so I sometimes have to eat all meals at a restaurant for up to two weeks and it is tough. I use the rule of small numbers and always “sauce on side”. Getting perfect numbers isn’t something I can do and so I work on “good enough “ and it has served me well for 42 years treating type 1. If you don’t have a copy, please consider buying the book “Think Like a Pancreas “. It’s a great read and has a lot of great info. Finally, welcome and I hope you enjoy the forum and I wish you both good luck :four_leaf_clover:

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#6

There’s no way around it: getting your insulin right is just a really hard thing to do. And of course it never stops — even if you do get to savor the victory of guessing your lunch carbs correctly, there’s still dinner to keep you humble. But then again, when you guess wrong, there’s always the chance to do better next time, too. It’s a glass half-full or half-empty kind of thing.

Anyway, the advice you’ve gotten is really good. The internet is your friend: if you can’t find the nutritional information for exactly the item you’re ordering, just find something like it and take your best guess. Write down whatever you decided to call it, see how that went, and make a note so you can adjust if necessary the next time.

On how much you watch the Dexcom? You’re still very new to being your own pancreas, and it makes sense that learning how takes up a lot of brain space. As you get more experience, it will become more automatic, and I bet you’ll just naturally find yourself looking at it less often.

That said, if you’re finding it really IS interfering with your ability to do anything else, then that’s when it’s time to get some professional help. Lots of highly competent, hugely successful people have benefited from counseling; you might as well be the next one. :slightly_smiling_face:

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#7

Hi and welcome to the forum - and Congratulations on your recovery from COVID! You’re only a week in but one thing newly diagnosed diabetics usually do is schedule a visit with a dietitian (some of us go back for a refresher now and then as well). There area great apps and carb count guides available but it will be helpful to sit down with someone who can guide you and give feedback. I eat out (well, bring food home) and generally find the carb counts to be pretty reliable - but that may not be the case for everyone, and I’ve found which ones I need to adjust. Give yourself time, don’t expect perfection, and keep learning.

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#8

Thank you all for the kind words, it’s good to know I’m not in this alone! I have a follow up appointment with my Endo and Distician on Wednesday and Friday, so I’m hoping they’ll be able to shed some light on everything, given that our first meetings were essentially that, getting to know each other and going over my last month+ of being a newly diabetic.

#9

I’ve usually left a dietitian appointment with instructions to keep a food log for them to review with me later. You could get a head start and start recording now. There are a number of apps to track food, glucose and insulin, but some people prefer to do it by hand. Either way I find the more diligent I am with record keeping the better it helps me make adjustments and the more info your team will have to guide you.

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#10

@Ringler91 Welcome Jonathon to the JDRF TypeOneNation Forum! You have arrived at the right site to learn and share you diabetes experience; you have received some very sound suggestions already, and I expect you’ll see much more. As we are all a bit different in how diabetes affects our body, take suggestions that fit you and let others slide. Like for you and Danielle @fieldiez “diabetes” was a birthday gift; on my 16th I was too weak to get out of bed, admitted to hospital and two days later [took that long in the 1950s] got my first BS reading of over 1,700.

You have much to learn about diabetes and I suggest that take it bit by bit; concentrate first on your carb counting and observe how foods you enjoy affect react to the insulin you inject to cover the carbs. Try staying away from a “sliding scale” and instead do the rather simple arithmetic yourself - I expect you will get better results. Diabetes should not keep you from enjoying life and accomplishing your goals; I suggest that you follow the practice of mking your diabetes fit you. You define yourself, diabetes should not.

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#11

It is a daunting task at the beginning, but it will get easier over time. It is something that requires your attention and monitoring. It helps to work on one thing at a time and then to go onto another. You might consider the app CalorieKing to your cell phone. Good luck!

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#12

I was diganosed last July, at age 32. It’s totally overwhelming. Nine months later I’m finally at a place where I am more comfortable giving insulin and dealing with “the aftermath” (haha) rather than less comfortable.

I used a Dexcom for about six months. It was really helpful to get a better idea of what my glucose is doing, relative to what I put into my body, exercise, etc. However I recently gave it up because for me the wrong numbers were too frequent. I can say I’m feeling much better without it (though again, glad I used it for the time I did). My numbers seem fine. We’ll see what my next A1c is.

As far as carb counting, I have my lunch ratio (7 carbs/unit) and dinner ratio (9 carbs/unit) (I don’t eat breakfast), and I have a pretty good idea of how different carbs affect me (legumes need less insulin, fat needs more insulin LATER, more than 15 carbs of bread (for me) needs much more insulin LATER, high glycemic needs a longer pre-bolus, etc.). I use this as my “insulin game plan”, but inevitably it changes from day-to-day at any given time, depending on how things are going. So yeah, it’s totally tricky, it’s like a chaotic system (highly sensitive to initial conditions), I just do my best. :slight_smile: If you pay attention, and learn general lessons, you’ll get better.

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#13

Thank you all for the kind words, I have started branching out more in regards to eating out, but I’m still playing it “safe” by getting takeout from chain restaurants that have nutrition facts listed online. I feel that I should’ve been branching out this whole time eating out and figuring what kind of meals match up with x amount of insulin, but I haven’t had the confidence to do so. That said, I think it’s time for me to do some experimenting with food, because my breakfast and lunch are pretty much the same everyday and I relatively have the same results as far as blood sugar goes throughout the day, but I need to get out of my comfort zone so I can stop being handcuffed to the house!

#14

Hello Jonathan! I’m only 13 but I have had diabetes since I was 5. I totally understand being scared to go out. Something I suggest is looking on the app store on your phone for looking for an app that can tell you the carbs for food. You can look online, but I find an app that I use to be way more useful. I also suggest getting a bunch of measuring cups. I have about 4 pairs of them. On packages of food that you get, it will tell you the serving size and how much to have so you won’t have to guess the carbs. From experience, it takes a while to be able to look at food and guess how much it is. So don’t put yourself down too much. About being able to go have fun, I definitely feel that. A thing that I do that could help you, is to set an alarm to go off every 30 minutes. So then you can check your blood sugar and make sure it’s okay. When I got my first Dexcom, I definitely stared at it for too long, but it goes away with time. I hope some of my suggestions could help!

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#15

@Froggo Lillie, welcome to the TypeOneNation Forum!

Your post shows lots of wisdom and you share some wonderful and helpful advice.

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#16

Welcome Ringler91, You might want to try a low carb meal when you are eating out. Eating out can be a real pain if I don’t look at the menu ahead of time. I can always order a salad with dressing on the side, but if I want something different requesting vegetables or whole grains always helps. A high fat and high carb meal, like pizza, can be the most difficult and usually requires a bolus before and after the meal to prevent a spike in your BG. I’m one of the few that actually like to eat at a hospital cafeteria where they show the contents and carbs/fat/protein in a meal, so it makes it easy. Going out with family/friends can be difficult with delays in ordering, etc., but the social aspect is so important!

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