Super Defiant

#1

I was diagnosed with LADA just after the new year although I’d been sick for quite awhile. The first few months I did what intellectually I knew was necessary and at my first followup appt when the A1c was down the doctor said “you’re adjusting to the new diagnosis very well”. Then summer came and along with it summer activities that include food. The bike club routine stop for beer and pizza. Do I order the salad and water and watch everyone eat pizza and drink beer? The week long family reunion at the lake… surrounded by bags of my favorite candy… licorice… breakfast of pancakes, waffles and cereal. Good grief. I had to make several of my own meals but after days of that licorice beckoning I caved and opened the bag for one piece… right… super sick that night.
I hate this damn pump and the tether. I hate and fear the lows. I hate and feel guilt with the highs. The expense makes me angry. I’m depressed and can’t sleep. It’s tough to get to work and sometimes I just don’t. No one gets it and some I don’t want to get it. I don’t want my mother or my children to worry about me. Argh. This sucks

2 Likes
#2

Yes, it does suck, but keep that defiance glowing and don’t let the beast that is diabetes win. You may hate the differences you are forced to endure, but you would hate even more the disabilities that may come if you ignore self-care.

4 Likes
#3

My philosophy on “treats” is to not deny myself so I have “got” to have some. But if I AM going to have them, I want an accurate carb count so I can plan how to keep the high blood glucose down to a minimum. I have a treat every day. After dinner (and before bed) I have a latte’ (made with almond milk and Splenda), a Balance Bar (Cookie Dough flavor) and a biscotti. Depending on the size of the cup or mug, my latte’ is 1-2g carbs, the Balance Bar is 22g and the biscotti is 17g. So I dose for 40 to 41g of carbs.

How SOON I eat this after my bolus depends on my BG. If I’m 120-140, I’ll wait six or seven minutes. If I’m 160-180 (or above) I wait at least 15 minutes.

I don’t eat a low-carb diet because my body just burns through carbs. I count and account for everything I eat and always have half a piece of fruit with every meal.

What I have figured out works for me, but my advice to you is to find what will work for you. I would start by talking to a CDE and dietitian about figuring out the right diet for you. By diet I mean what you eat. How many carbs does your body work best consuming? What are some foods I can prepare ahead of time that will make it easier for me to have a good, balanced diet?

One thing that I do is that I make meals that are modular. Chicken and brown rice, taco salad, chili. I then add half a piece of fruit and adjust my other carbs so my carb count is 60g. (It’s usually 45g for women). Whatever your carb goal is, eating better will always be easier when you’ve planned ahead of time.

I acknowledge that eating right as a Type 1 is already a pain, but having a good scale, measuring cups and a calculator close will help immensely. My brother was diagnosed when I was 5 (I developed T1 at 43), so I asked my Mom if she still had his old scale. (She did!) I use it every day to measure out cereal and chips or whatever.

Your problems are not insurmountable. You just don’t have a plan. Go find the pros who can help you develop that plan.

4 Likes
#4

To me you’re doing great. I’m coming up on 4 months and while I avoid much I don’t starve myself of treats. You shouldn’t either. I think of it as living as I should. Meaning…we all need a treat but our diets are horrible. Not to say I don’t indulge with pizza every Friday (one to two slices) and I enjoy dark chocolate on occasion. If you think about it…we should be eating well without type one. I feel you though. I hate how expensive this is and how it (sometimes) is all I think about. I worry my kids will get this and I worry about insurance (even though I’ve had it for ten years never used it) and some days…like today…I’m up at four am checking blood gar and a diabetes forum. But you know what? You said in your post that you felt awful before. I did too. What I try to remember is that I don’t EVER want to feel that way again. So I better do this and thank God I wasn’t born 100 years ago. I get down because I feel so alone sometimes. I don’t know anyone else with this and it’s hard sometimes to talk to family about it. I get that. I hope today is good for you and you’re not alone.

PS…you aren’t what I consider defiant. If anything you’re human and you most likely got back on track. Good for you. I get own if I’m over a certain number or I eat something I feel I shouldn’t have had. Such is life and can only do better next time. :stuck_out_tongue_winking_eye:

4 Likes
#5

Sounds like a classic case of what I have come to call T1 Claustrophobia. It comes to all of us, less frequently over the years, but I think you hit an especially vulnerable period a few months after dx when the initial shock has worn off and the difficulties of just getting the hang of your treatment regime and carb-counting and whatnot starts being less of a distraction and you suddenly realize, wait a sec, unlike every other time I’ve ever been down with something, This. Is. Never. Going. Away.

I was DX’d in 1983 at age 28 and I still remember looking at the list of foods they handed me in the dr’s office. As I recall it was divided into three categories: stuff that was ok, stuff you could “exchange” (the old “exchanges” diet, yeesh), and finally the all-important Avoid list. As I recall–and I’m sure my memory is colored by the subjective shock of it, but nevertheless: right at the top in funereal German black-letter all-caps was a doom-laden four letter word:

Beer

Noooooooos!!!

That, plus the “I can’t believe I’m about to do this and it’s never going to stop” feeling when they handed me my first hypodermic and showed me what to do, was my first experience of the dreaded T1 Claustrophobia.

Here’s the thing though: it is SO much better than it used to be. Ok, pizza is the devil incarnate, we all know that (search on “pizza” here and you will see all manner of frustrated how do I bolus for this stuff!!! comments), being as it is the single most ubiquitous, unavoidable and highly tempting social-gathering food out there–and of course pizza without beer is an abomination before the lord. Nevertheless, even rich, carb-containing dinners can yield to a diabetic well armed with pump, CGM and a little foreknowledge. It is true that a lot of us, yours truly included, practice carb avoidance as a matter of routine because it just makes it a lot easier to stay off the BG roller coaster. But it’s not an absolute. As a f’rinstance, last night at a restaurant I enjoyed two Sierra Nevadas, New Orleans-style shrimp toast and suckling pig charcuterie, and thanks to the dual bolus feature my post-prandial never got above the 140s. Well, ok, my CGM says I was trolling along on the low side overnight but nothing I had to get out of bed for, just 70s with a level arrow.

Whereas back in the old R/NPH days… well, let’s just not go there.

Point being: we all know exactly what you’re feeling because we’ve all been there and there is no shame in it. It is what it is. But we’re also here to tell ya, Yup, you can do this.

5 Likes
#6

Just have to ask HTF do you get to sleep after an evening latte? You are truly a man with many skills and talents!

1 Like
#7

Yes, D sucks the big one! While some PWD have found the approach of “accepting” or even “befriending” their D helpful, me not so much. I “accepted” my daughter’s Type 1 almost immediately as a PITA that was never going to go away and that was going to suck away a great deal of time and effort long after my life is over. But I’ll be gosh-damned if I ever shake hands with it. Viewing it as a (greatly!) disliked relative who came for a visit and never left helps us deal with it. She and I can never not see damned old cousin Ned sitting there in our living room, but we do our best not to let him stop us from having a good time. I’m not saying that living with your D will ever be easy; what I’m trying to convey is that you can still live a productive and fun life. It just takes quite a bit more effort now.

Unfortunately, having Type 1 makes pizza “The Devil’s Food”. Although I have (relatively recently) seen the light and become a somewhat low-carber (and encourage my daughter to do the same), the (infrequent for me and occasional for her) pizza is not off the agenda. You may find some version of the following helpful for you when you indulge in pizza (I recommend not going as heavy-handed as I do with my daughter until you find out what works for you, as you are likely more sensitive to insulin than my 14-year-old whose middle names are “raging” and “hormones”): count the carbs in the pizza you are going to consume; multiply this number by one-point-something (we use 1.65 these days); pre-bolus some percentage over 60% up front (we use 75 to 80%) and program the remainder as an extended bolus over 4 or more hours (we use 6 hours). If you use a CGM, wait for “the bend”, then enjoy your pizza (and maybe even a beer :sunglasses:). Does my daughter’s BG remain under 160 after pizza (without beer)? Heck, no, but she doesn’t become an irritable and matricidal beotch because her BG sticks around in the 300s for hours on end despite multiple rage-boluses, either.

Keep on fighting the good fight, and hang in there!

ETA: And don’t expect your mom to never worry about you (either with or without D). It’s in our job description! :heart:

3 Likes
#8

Coffee doesn’t keep me awake. It’s the thought of the

                                                                                  Grumpy 
                                                                                  Orange 
                                                                                  Person

having his stubby little fingers close to the button that launches the nukes.

3 Likes
#9

I totally agree that summer has brought a whole new host of temptations for my first summer with diabetes. (I was diagnosed with LADA back in late March.) I don’t know how anyone can give up fruit: peaches, fresh figs, Maine blueberries. But. . .

You know what pisses me off, I didn’t even get to enjoy one guilt free summer of maple creemees since moving to Vermont! (the famous maple flavored soft serve ice cream that is f***** everywhere). But I did steal a couple licks from my wife’s cone. Ice cream, maple syrup, and high alcohol content IPAs are basically the three main food groups of Vermont in summertime. All of which I love and now only partake in very small quantities and track as part of a fairly planned diet. (Typed as I polish off a salmon salad dreaming of maple ice cream.) I’m not going to deprive myself completely, just dramatically scale down my portions and count them. Or I make a deal that I will eat X as my pre-exercise snack before I go run two or three miles.

And I have to admit, a memory of seeing my grandfather’s foot when I was about seven years old (missing a toe due to diabetes) frequently crosses my mind.

#10

Caffeine does not keep me awake. Counterintuitive, I know, but then lots of things about me are counterintuitive like the fact that I am T2 with practically no insulin resistance, the fact that I’ve lived this long in spite of the stupid things I’ve done, etc. :laughing:

2 Likes
#11

Seconding what others have said, I started out with that “Oh no I can never eat this again” broken record sounding in my head, but the reality is that with time and experience it doesn’t have to be that way. I avoid almost none of my favorite high carb foods; I just use reasonable-sized portions (not the industrial ones that were my common practice pre-D), I don’t do it very often, and I calculate the carbs and bolus as accurately as possible–as I do with any food. You learn to coexist with this beast. It’s doable, though definitely a PITA.

2 Likes
#12

Thanks for your thoughtful reply Tim. I’ve gone grain-free since diabetes and it’s been like magic. Except when I defy. Which these days is daily. Before diabetes I was leaning towards less meat and more whole grains but diabetes has turned all that on its head.

I realize that a plan is necessary. Plans were meant to be revised…maybe even daily. That is my problem. Life doesn’t lay still for the plan to be played. And that is also where defiance steps in… last year, before diabetes, I planted 200 strawberry plants. Here, in Western Wisconsin, this spring would have been a plethora of fabulous strawberries. And. I. Can’t. Eat. Them. Need I say more about how F’d up diabetes is.

It makes me angry when the endo says “oh, you can eat anything you want”. Sure… then I have a 250 spike. I don’t have a carb goal other than experimenting to see what I can tolerate… and it’s not much. Before diabetes breakfast was rough cut oatmeal with flax seed, maple syrup and milk. That is all over. Breakfast is the most difficult meal of the day now. Even the lactose in my beloved latte is too much sugar. Insulin acts so very slllloooowwwly and sugar processes so very quickly. It sounds like you eat a decent amount of carbs. Do you have blood sugar spikes after a meal? How soon before a meal do you bolus? I’ve experimented and had an unacceptable spike from a peach that I nibbled over a two hour period and the bolus was 30 minutes before I started nibbling and my blood sugar was under 100 before the bolus.

I am fortunate to have one of the best, if not the best, endocrinologist at my teaching institution. I work in heart disease and diabetes research and through my work was acquainted with the endo team. It is very odd for us both to have me be the patient. Because of my work I am familiar with the physiologic aspect of diabetes, but nothing could ever prepare me for the actual day-to-day living with type 1 diabetes. It is a “designer” disease and each person must experiment and learn their bodies individualities. That process takes time and I’ve made great headway. That doesn’t mean I accept this F’d up disease and I’m really pissed off. I am not machine and that is what it takes to follow the necessary diet plan to keep me from having diabetes side effects… which I already have… so to keep them at bay…

Argh!!
Lauri

#13

Yeah… fruit is the major problem. A few years ago I moved to 40 acres in Western Wisconsin to start an organic produce farm for a retirement project. Fruit grows rampant here and is the tastiest ever. Fortunately, or sadly, I had near total crop failure on strawberries this year, my first spring with diabetes. But fruit is everywhere on this farm… apple, plum and pear trees, blackberries, raspberries, blueberries, melons, etc. The organic farmers here make maple syrup in the spring. I keep bees so have tons of honey. Also grow hops and plan to brew beer - love high alcohol IPAs and will never give them up. Exercise is key it seems. I still work a desk-type job that is killing me, but retirement and with it, better health is near. Super sad about needing to wait until retirement to focus as much as needed on my health. Eating well is slow cooking and exercise takes time too.

#15

I’m sorry, but I’m not following you… Please enlighten me as to what political pun I allegedly aired.

#16

Wow! You said it. You got what I was feeling and my frustration and realization that this is for life. And BEER. That hit me hard. And through the grace of god I’ve been able to handle the carbs in beer pretty darn well. My new favorite is Surly, Ax Man Todd. A frosty mug, pour 1/2 can in mug and the other half goes in freezer until you’re ready and then another frosty mug for the other half can. Savor. And life is good.

I have never had a meal as you described with a postprandial <140. Even with a 30 minute prior bolus beginning with a <100 BG. Maybe with straight vegetables and meat only. Eventually sugars go to normal but it can take hours if there are carbs in the meal. I’m using Humalog in a pump. Later this month I see my endo and want to talk about that faster acting insulin and maybe the synthetic amylin injection to slow down digestion.

Diabetes treatment “in the old days” was pretty rough. Did they have blood glucose monitors then or did you have to measure from urine? As a teenager I used to give my friends mom insulin injections. It was a vial of insulin that you drew into a syringe but instead of filling the insulin pump reservoir it went into her shoulder. It was a big needle and I felt so bad doing it.

But yeah… claustrophobia. Exactly what I have.

#17

If you are into cooking there are some superb low carb recipe sites out there… I have recently discovered psysillium bread. The stuff looks and tastes like bread… is reasonably idiot proof if one actually bothers to follow the recipe (I didn’t one time and forgot to put the baking powder in… did last minute… kind of worked, but the outcome was still edible and tasted fine).

I haven’t tried making pizza with it yet, but i will. Pizza toppings are actually non-evil. It’s just the crust that’s a killer.

The site I love is http://alldayidreamaboutfood.com/recipes

Finding ways to eat that don’t make blood sugar crazy help a lot…

Oh, and for me beer is absolutely and totally on the menu. I far prefer to drink than eat my carbs… I’ve got a tallie of TsingDao Beer waiting for me in the fridge at home after I leave work…

1 Like
#18

Of course the other danger here is that you can get the mindset that there is some Perfect Diabetic out there who always gets it right. I’m certainly not that person. Sounds like some of what you’re going through may be from I Am A Bad Diabetic! syndrome, which is also a thing to be avoided. Especially early on when you’re reading all this new stuff about how to control your blood sugars!!! it can seem like you’re just not doing it right and suck at this etc etc. I’m the first to admit I don’t always (or even usually) nail it like that. Restaurants are hard and I’m not surprised to see a 200+ spike after eating out, so I was particularly proud of that one. It’s very hard to get all these curves to line up just right, and a couple of hours for the insulin to catch up (bolus or correction) and settle everything down again is not unusual. As far as practical tips go, one thing a lot of us have noticed is that if you’ve got insulin on board a reasonably vigorous fifteen minute walk can stop a spike dead in its tracks.

I definitely had it easier than if I’d been dx’d ten years earlier or more. I think I got my first BG monitor, a One Touch, a few years in. But I didn’t have to boil my urine on the stove top and all that. We had disposable BD syringes (“For maximum injection comfort!”) and BG Chemstrips: you put your blood on the patch at the end of the strip, waited a minute for it to change color, then compared it to a color chart on the vial, which told you where you were within a range spread of like 40 points or something, though the shade of the color helped narrow it down a bit. You could cut them in half the long way and double your amount of strips (woo hoo!).

R/NPH was actually an improvement over what had been available previously–when I read the stories of people who were dx’d earlier in the history of this stuff I’m embarrassed to complain about it as much as I do. But it definitely sucked compared even to Lantus-Novolog MDI, let alone a pump. It was an attempt to get the insulins to conform to the rhythms of ordinary existence, but man the hypos on that stuff were nasty and could come totally out of the blue. The “Eat Now or DIE” regimen as I called it. The big difference (huge, earth-shaking difference) between then and now was that you absolutely forced your life to conform to your medication and not the other way around. When I finally got on MDI after 20 years of that, it was like being freed from prison. And of course the pump affords even more freedom than that, but for me MDI was the turning point of finally feeling like I could actually control my insulin instead of it controlling me.

EDIT: I should point out that a lot of people still do R/NPH, and I’ve read people say they actually prefer R over the newer fast-acting insulins and have tried using it in a pump. To me that seems crazy, but YDMV is an important acronym around these parts: Your Diabetes May Vary.

#19

Another point I would make is that whilst food is obviously a huge par in controlling blood glucose levels, there is so much more to it.

I don’t actually believe there is enough understanding on this, certainly I don’t understand it very well, but the Endocrine system is a hugely complex part of the body. Again, my understanding of exactly how diabetes impacts the endocrine system, and other processes in the body is limited to general knowledge, but it’s more complicated than a basic you simply can’t produce insulin to deal with the food you eat.

As most people on here will contend, there are a huge amount of external factors that will cause your BGs to vary. In fact, although it seems counter intuitive, for me often exercise causes my BG to raise higher than I want it to. Not to mention stress, anxiety, or even lack of sleep. These are all things the human body keeps in check with a working pancreas. The only reason I say that is it’s important to remember that you need to not beat yourself up over some high blood sugar readings. It’s not always because you haven’t adhered to a strict diet.

That’s not to say it’s not possible to control the other factors either, many people do it quite successfully, but sometimes you will get weird inexplicable readings. Sometimes you’ll have a few days of awesome readings, and then a day later you will do the same thing and everything will be high!

All anyone can ever do is do their best, within their own limits. Find out what works for you, and what you are happy sacrificing. Because I can guarantee if your stressed all the time because you aren’t having your Friday night beer, that will probably impact your blood sugar way more than your Friday night beer would :wink:

2 Likes
#20

The disabilities are what I fear. What finally got the diagnosis was peripheral neuropathy. My primary sent me to this horrible test and that nasty test for carpal tunnel syndrome and it was the orthopedic MD who ran the A1c and pretty much kept me from the emergency department with ketoacidosis.

You have a beautiful view and your words are very real and very healing. The articles I read about side effects always end with “strict glycemic control”. That is all medicine has to offer. I hear one big DON’T and a you CANNOT. I am experimenting to find out what I CAN do. What I have been concentrating on is pushing the negative thoughts from my mind. Sometimes when I let myself dwell on the bad thoughts I get sucked in and it’s difficult to get back. Your words are going to help me out of the abyss when I get sucked in. Thank you!

1 Like
#21

You were diagnosed just 4 months ago and you sound so together! Truth is though, I was great for the first 5 or so months. Here, in Western Wisconsin, winter makes it tough to get around and that was great for me and diabetes management. With summer activities things got difficult and really made me feel isolated. I don’t know anyone with T1D either. Sadly, the one person I did know died of heart failure over 5 years ago when she was about age 50. But no one really gets it and it’s not their disease so why should they spend time to learn about it? My daughter though, immediately studied up and has been my support. She was there for my first lows when I needed help and those experiences nudged up her (and my) understanding a bit. I am so happy she has my back. I completely understand when you say you feel so alone at times. I don’t talk with many of my family about T1D unless they ask specific questions. My 84 year old mother is terrified and asks if “my numbers” are ok. I always try to minimize with her so she won’t worry.

Today was good. Thank you… I hope your day was good too!