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Somewhat Newly Diagnosed-HELP!

Hi everyone,

I just joined this support group in hopes to connect with people with T1D. I was diagnosed last year on my birthday (Yay me!) and ended up in ICU and had all the symptoms of being diabetic. Like others I have seen on here, I was misdiagnosed as Type 2 because I was diagnosed at 31. However, after further testing, it was determined that I was type 1. With that said to fast forward—1 year and 3 Endocrinologist later I am still feeling like I am newly diagnosed. My new doctor I just saw 3 weeks ago has me on a CMS temporarily and new diabetic classes. I am hopeful this time around that I will get the help and direction I truly need since I am very unstable with my levels still. I am overly exhausted as it is but now I don’t get sleep because I can’t sleep, increased hunger but try to fight eating more than I have to because i don’t want to raise my levels, and not to mention stress over this who new life adjustment. This is a big struggle and frustrating! Any help on coping with T1D? How do you stay encouraged after your moment by moment of reading a number determines your day?

I appreciate any and all input. I am sure I will have more questions. 🙂

Qtross

  • #122282
  • Hello! Well you’ve definitely joined the right group! My son has T1D , not me, so I can only talk from a carer point of view I’m afraid, hope that is ok with you. Its nearly 5 yrs now and he is 17 , so I can tell you a little of what its like here.
    Well good to know you now have the correct diagnosis, as there is a big difference between T1 & T2.
    Its ever such a lot to take in in my opinion and I would say you are still newly diagnosed as a year is a short amount of time I feel. Be kind to yourself.
    My son’s daily levels can often be all over the place too, so you are not alone. They are sometimes rather high because of the time he decides to test i.e. too soon after eating. He is not consistent enough with his eating habits, testing etc (general lifestyle) so consequently his readings are not consistent. This of course is a worry for me and his dad, but not my son (or so it appears) and I am just waiting until he matures and grows older and then maybe he will settle into more of a consistent routine. He’s a great kid but diabetes is not his first priority I don’t think. He does what he has to, more than the minimum,but not much more than that.His A1c results have been 6.5% at their lowest and 9.4% at their highest. Typically his range is between 7.5% and 8%.
    I would suggest if you are hungry then its best you eat. Low/no carb foods would be ok to eat and wouldn’t risk raising your levels. That’s what my son does when he’s paying attention, is hungry and doesn’t want to raise his levels e.g. if he’s going to bed, doesn’t have low BS but is hungry. He’ll have some nuts or scrambled eggs. (Just scrambled eggs)
    Anyway,hope the above is helpful to you. Take it day by day, its a journey and it changes. And like I said before be kind to yourself.
    Best wishes 🙂

  • #122286
  • “Be kind to yourself” is probably what I am NOT doing due to my determination (thats turning in to hopeless frustration) to get better or under control. I always test before a meal unless I don’t feel well. I’m pretty consistent with everything I am doing but can always improve in my eating style. I don’t eat bad but I could up my healthy meal planning to be better. For example, 2 frozen veggies and a meat choice over freshly prepared veggies. I know it’s trial and error but I am over the continous errors. Just don’t want to get worse before it starts to get better. I thank you for your kind words and you sharing your story. Anything helps….truly!

  • #122293
  • I was diagnosed at 31, too. That was 22 years ago. I had the same diagnosis — incorrectly as T2. I felt like food was the enemy for a long time and avoided lots of things. As I got used to the insulin regimen, though, things began to get a little bit better each day.

    What helped me the most was carb counting and a simple food diary (now on a google spreadsheet). It helped me see what I can eat and what to avoid. I share that with my doc. I think you get used to watching the blood sugar numbers and dealing with the syringes, and fumbling with them at restaurants, etc. It’s part of the drill with diabetes.

    There really isn’t anything I feel I can’t do. I’ve got a somewhat active lifestyle, done lots of 40-50 mile bike rides. Been able to travel with no issues.

    The good news is, you can get your numbers down. You can have more energy.

  • #122294
  • I’ve got almost 57 years under my belt.
    I don’t have a pump or a cgm. I use a cloud-connected meter and pens.
    I don’t obsess about my disease, but I pay attention to what I eat, how I feel.
    The single common habit of all the successful diabetics I know is that they check their BG on whatever schedule their favorite MD recommends. Mine agrees that I should test only before meals, because that’s when I shoot or when I feel low. Our strategy works because my A1c runs 6.5 to 7. I have lows, but the meter sends messages to people who care about me.
    My disease is inherently unstable. I deal with it as best I can. So can you.

  • #122296
  • I’m so sorry for your diagnosis. I was diagnosed T1 a few months ago, at age 42, similar story. I have found two books extremely helpful:

    Think Like a Pancreas (Gary Scheiner) gives actual tools and methods to find what works for you. With every new success, I pick up the book again to find my next step for added control.

    and

    Thriving with Diabetes (David Edelman and Paul M. Rosman) helps me focus on the good times, notice what works well for me, and staying positive.

    I started on a CGM 4 weeks ago, and love it. I can see what’s going on in near-real time and take action if needed, before things get too far out of control. Best of all, when I do well and see it, I stay motivated: especially when I see numbers stay stable or go down
    when I exercise, requiring less insulin.

    Keep at it, you’ll get there.

  • #122310
  • I understand your frustration, but its normal at this point for a new Type 1 diabetic. I know about it since I’ve been working on my diabetes for 61 years and 11 days……
    Some things to keep in mind, anxiety raises bg levels, often very high and very fast, so any way you can diminish your fear and anxiety the more likely you will gain better control. Some use meditation or prayer (as suits) to lower anxiety, and it will likely help your sleep too. Main reason this works is that it focuses your attention on something good.
    You need to find your pattern for when and how your insulin moves glucose from your bloodstream into your cells, so that it will become energy. Myself, when I got my first glucose meter (in 1986) I took a test every hour while noting everything I ate so that I could understand how to improve things. That gave me a foundation for improvement from that point on.
    Mind you there will be surprises at times, no matter how well everything is going generally, but they should happen less often and less severely as time goes on.
    You might want to add a salad with each meal, it tends to steady things. What I have is at least 7 good vegetables, particularly cruciferous ones (cabbage, asparagus, Brussels sprouts, cauliflower, kale etc.) I eat good meat, 2 vegetables and a salad at lunch, and 3 good meat, vegetables and salad for supper. All of which are organic, processed food it full of things that makes control harder, so why eat them?

    Enough for now, good luck and keep asking ANY questions about your diabetes here and elsewhere. Endocrinologists are good, but they have limited time and don’t know near as much as people do here and in such channels.

    Hope this helps.
    Ted Quick
    dx 4/9/1956

  • #122321
  • Qtross, it takes time my friend. It can be frustrating and you will have highs and lows, just part of the deal, do not beat yourself up. If it were as easy as just eating the same things over and over again and taking the same insulin, it would be easy, but that is not the case. Every day is different. I’ve had this for 51+ years, I still am frustrated at times. If you have insurance, I highly recommend a Continuous Glucose Monitor (“CGM”). It will show you patterns of what particular foods do to you, how quickly insulin is absorbed, and how much insulin your system needs for particular foods.

    Tedquick’s advice about processed foods is right on point. Not that I never eat them, but it is really important to know exactly what you are eating. Processed foods contain all kinds of things (like hidden sugar). As such, they tend to spike you. So, lettuce, fresh vegetables, lean meats are really the way to go to steady your blood sugar. I tend to eat few carbs. I sometimes splurge, but try to compensate with a extra bolus for that time. That being said, the more carbs you eat, the more you have to figure out how much insulin to take and, for me, that is when I tend to miss my desired ranges. Fortunately, I would rather eat a nice piece of fish, a good steak, chicken Kiev, or maybe some scrambled eggs with cheese and hot salsa than eat a piece of cake. It may be that I am just so used to that. At this point, the thought of eating something sugary makes me think of what it feels like to have an elevated glucose level, so it’s not hard for me.

    Anyway, good luck and you will get the hang of it as best as any of us can! JC

  • #122327
  • I’m so glad I stumbled upon this feed! There is a lot more backstory to this, but to sum things up quickly, my co-parent (not romantically involved) is transitioning MTF and was admitted to the ICU last night after being extremely ill for 2 days. It turns out that she has late onset Type 1 Diabetes! It all seems so out of the blue since she’s healthy, pescatarian, thin, active, a non-smoker….her 37th birthday is next week, and she’s a professional dance teacher! As a self-employed person, she’s never had health insurance and is doing all of her transition medical management through Planned Parenthood. She hasn’t had a primary care physician in probably 15 years.

    I’m very type A by nature, so I’m trying to find as many solutions and assistance options for her even though her health is not my direct responsibility (we have joint custody of our infant daughter). However, this diagnosis could not only potentially cripple her health-wise, but also financially, which affects me as well. My gut reaction is to stay actively involved with her to make sure that she does what she’s supposed to, even though I have my hands full parenting my infant and DO NOT want to parent another adult.

    What does one do when you’re faced with T1D and no health insurance? How can she possibly juggle her hormone meds with insulin and diet without a lot of medical help? What happens if she has our daughter by herself and has a surge or a crash and is helpless? I know there’s a big learning curve with management, and while I hope she’d take the necessary steps to manage her health, she doesn’t have a great track record of staying on top of adult things. There are a lot of resources for caregivers when the patient is a parent, but not a lot for caregivers or partners of newly-diagnosed adults. I guess I’m just looking for reassurance that it will be ok….

  • #122339
  • Without insurance, I would recommend Walmart. Test strips are very expensive if you have to buy name brands (often $30+ for 25-50 strips), Walmart sells their own brand called Reli-on. Last time I checked is was about $9 for 50 of them. Your friend will need lots of these especially in the beginning, checking blood sugar levels will be required often for the rest of her life. Wal Mart also provide insulin, it is not the latest greatest stuff, but it doesn’t cost $300/vial. It is $25/vial for regular and NPH. The regular is a bolus (quick acting) and NPH is a delayed insulin. Not giving medical advice here, so do some research on this.

    Diet is a trial and error for what works for her. That being said, low carbs is what works for most of us. I eat lots of protein which doesn’t spike levels as much (Greek yogurt not sugary kind, chicken, cheese, some lean beef, lot’s of veggies, etc. Carbs can and should be be eaten of course, but you guys will have to figure out how much insulin to take when consuming them. Lots of phone apps can help with this.

    Best of luck to your co-parent, your child, and yourself.

  • #122341
  • @skimannum1 – Thanks so much for the tips! She only eats fish and shellfish (no chicken / pork / beef), but generally is a healthy eater already. She LOVES carbs though, so this is going to be a rough change. She’s used to eating a piece of bread with lunch / dinner and some form of potato for breakfast every day. Eating out is going to be the biggest challenge since she usually grabs dinner on the run between clients in the evening. I also imagine this will impact her wine / booze consumption as well. I know it’ll be trial and error for a while, and I hope that she settles into a pattern sooner rather than later! I’ll definitely send her to these boards as a resource.

  • #122345
  • Sid, she can still eat carbs, it just that you have to take bolus insulin for it. There are lots of general equations about how much to take/carb (generally 1 unit of bolus for 10-15 grams of carbs), but everyone is different and they don’t always effect us the same (this is a psychotic disease). My view is that having a lot of carbs makes it harder to figure out the right amount of bolus and just makes it more guess work on how much to take, so I limit them. May not be a problem for her though. Remember, we are always walking a tightrope, long term too high and complications set in, a bad low and you end up in the hospital or, sorry to say, worse. So, make sure she is checking her levels a lot. Without insurance a Continuous Glucose monitor (“CGM”) may be too costly, but if you guys can swing it, highly recommended. It has changed my life.

    In terms of alcohol, you don’t have to give it up, just be careful. It is counter intuitive, but alcohol generally does not increase Blood sugar (it does if you mix it with carb heavy mixers like orange juice with vodka). For me, red wine doesn’t have a big impact and I do love it. Metabolically, your liver works on metabolizing the alcohol first instead of dumping glucose in your system. Again, just be careful and make sure she checks her sugars a lot.

    In terms of eating out, download an app from “one drop” it’s free (I think or is really cheap if not free) and it certainly has most chain restaurant items in it, telling you carb counts, protein, calories, etc. You can also query it for general foods like an 8 ounce flounder fillet with breading, etc. I don’t count calories at all, but certainly do carbs.

    Hope some of this helps, lot of experience dealing with this myself (51 years and counting) and lots of others here as well. JC

  • #122352
  • UPDATE: I thank everyone for taking time to provide your insight, advice, and support. I feel so much better and have made several changes. I have cleaned out my kitchen and adapted my lessons I learned from my diabetic class. I have been most leveled for the longest. So cutting down on my carbs has helped. I have dedicated more time to better meal plans and reading my labels a lot better on foods. Yes i have been using less processed foods too. So that was a big help! I also attended the JDRF conference this two Sundays ago and it was AWESOME! I feel empowered and more informed than ever in this whole year’s journey i have been on.

    As a result, I am looking at getting a CGM and eventually a pump once i get my carb counting down better.

    As for Sid, just be encouraged and encouraging to your co-parent. From my experience, get well and properly educated. I know all to well about eating on the go and being a “foodie” but the great thing about this country right now is that more and more, people want to eat “healthier” so there are more healthy options. Yes, you do have to wait longer because it is not ready like the unhealthier choices but its worth it. Watch her carb intake and if she was already living healthy she should continue. This doesn’t defeat or define her so remind her of that. It wasn’t anything she did or didn’t do to have this happen. But if she can curtail her eating habits a bit better, it will also be greatly beneficial for your daughter to eat healthy at a very young age. Good Luck!

    We are all in this together and can’t ask for a better support group. God Bless you all!

    Qtross

  • #122424
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