I feel like this is an AA meeting, my name is Erin and I’ve been a type 1 diabetic for 8 years. I have been on the pump 98% of the time and my last A1C was 6.9. I’ve recently just have felt “Out of control” and my family is suffering through it.
At my last doctors appointment, I told Dr. Mazza that my tier for NovoLog has gone up and my prescriptions went from $10 to $60. She told me to try HumaLog and handed me the bottle. I have been on it for a little over a week now and I feel like its bring out the “newly diagnosed” in me. I’ve been having serious lows and got a nice visit from a paramedic on Sunday too. While writing this I do realize that I need to change my pump settings or like my husband said, “go back on NovoLog!”.
This morning, I slept through numerous alarms and didn’t answer the phone driving my husband crazy to where he drove home from work to make sure I was alive. This is what I have a hard time getting people to understand. I understand that diabetes is a 98% “self” disease, meaning that I need to take care of myself, bottom line. But that person at 8:00 am who slept through the alarm and who hit “ignore” when the phone rang was not me. And this is where the “out of control” title comes from. As I said in tears to my husband, “I did not make a conscious decision to turn the alarm off and turn over on the bed to die”, but that’s what I did.
While I writing this a trying to come to my point, I think I’m more upset with this statement that I said to myself “you’ve been doing this for 8 years, why don’t you have it down by now?” It’s scary to think that even 20 years from now my disease could always be changing and my predictions are useless. How scary is that? That makes me feel like a stranger in my own body.
As I wrap this up, there are a few topics I would like to throw out there to see what you all say:
Does anyone have a daily routine that is only in place for diabetes?
What, if anything, snaps you out of the fog of a low to realize that your low and it stops you from fighting with the person who is trying to help you?
First of all I’m very sorry this is happening to you. It sounds very frustrating to “have it down” and then feel like you are “losing it”. But I also feel you are being way too hard on yourself. It definitely sounds like the humalog is affecting your body differently and you need to make some changes in your settings. (perhaps your endo can help with that, and another option is Apidra).But what I reallywant to say is this is not your fault. Did you ask for all your settings and resulting blood sugars to go crazy? Of course not! So stop thinking “I should know what I’m doing by now”. I have only been diagnosed 3 1/2 years and only on my pump for 1 1/2 months (which definetely made me feel like a newbie again). But I have heard many long-timers of 10, 20, 30 years talk about how this condition always changes and you go through cycles of commitment and lack of motivation.
So it may not be pleasant, but it is normal! So take a deep breath, relax, do some nice things for yourself and then start working through it. I started a Type 1 Women’s Group where I love which I adore. I highly recommend looking to see if there is one near you and if not start one! (Mine is sponsored by the JDRF who helped put out the word). It really helps to talk in person with people who understand.
Ok, your questions. The first one puzzles me a bit, because I feel my whole daily routine revolves around diabetes! Less so now that I am on the pump, but I just would be doing things differently if I didn’t have the D. But I am lucky I’m semi-retired so I have the time. I can only imagine how stressful it is to have work, partner, family, etc and try and manage all this, especially at times like now when it all goes wonky on you.
I live alone, so there is nobody to fight but myself. I have only had one severe low when I first started on insulin and did something stupid, and I was unconscious but my liver kicked in. When I came to I “looked down at myself” covered in sweat and feeling like I was moving through molasses and I knew instantly what it was. I managed to test and swallow glucose tabs. The other morning I woke up at 34 and was completely unaware I was low (!), but I knew what the number meant when I did my morning test and promptly treated. Having said all that, I am a very independent person and don’t do well with people telling me what to do. So if I was married I pity my husband because I probably would argue just to argue if he told me I was low. But if I married the guy he would know me and would say, “Zoe, see for yourself, test your blood sugar and then you decide what to do about it.” And I would. Your husband knows you so think about it, then sit down with him soon and tell him the best way you would like him to approach you when he sees you are low. It might even be a “codeword”. Like he would say, "Remember YOU told me to say OJ to you, well, Erin, OJ!!"
Welcome to our (big) family and I hope things straighten out soon.
My son has been T1 for just over a year now. He has been MDI…PUMP…MDI …PUMP again in that time period. As he went out of the “honeymoon period” (kinda funny term if you ask me!..Like he is married to Diabetes) But…what I was getting at is that things have been up and down for him too…and he is on Humalog…your post makes me want to look into Novalog!
What made a huge difference for me was testing more - a lot more. That has allowed me to better predict what my BG will do and brought about good improvements in my A1c, but it has also lessened the number of highs and lows I have. I test over ten times a day - basically the “normal” times (wake, sleep, before meals) plus after meals and anytime I wonder what my BG is. I have let go of any resistance to testing - I don’t say to myself “well I just checked 40 minutes ago so I should wait for a while” - if I wonder what my BG is I test. Sometimes I’ll test five times after a meal if things seem odd and I wonder what’s going on. That also gives you a better sense of what your BG is doing and makes things a bit more predictable.
Get the “Using Insulin” or “Pumping Insulin” (Walsh) book if you don’t have one of them. Take the time to read them and plug your numbers in. You may find that you are taking too much insulin in an attempt to improve control, and this is leading instead to worse control as your BG bounces around more.
Work on improving carb counting - try weighing food for a while. That also helped. You’ll get advice from others about radically changing your diet - my opinion is that this isn’t required - unless you’re eating a lot of really high carb sweets, candy, and desserts. Those are too hard to manage except for the rare occasion.
For what its worth, I tried a couple of bottles of Novolog (I’ve been using Humalog since it came out) and for me I didn’t really see any difference so I stayed with Humalog. YDMV, but it is also possible that it isn’t the Humalog.
If you do those things now you’ll be way ahead of where I was at eight years post diagnosis. Back then I was still taking one injection a day of NPH and testing only my urine. Remind yourself it’s a long journey, so pace yourself, a little bit at a time. Good luck.
In the research I did before starting the HumaLog all I found was that it was different for everyone but basically the same drug. As for NovoLog, it might be different for each insurance company but it was a tier 3 and it went to a tier 1 so it just made it $50 more.
I’m sorry. I wish I could offer more than just support, but this thing changes on us all the time. It’s very frustrating. Very, very, very frustrating when you think you have it all worked out. But with a little bit of work and perseverance (either through patience or persistence when patience fails you), you’ll be back on top in no time!!!
To answer the specific questions:
Most of my daily routine involves involves an orchestration between what I have to do for work, etc, and what I have to do to stay in control. In the AM, that usually means splitting my breakfast in two parts. Part one involves half the bolus. A half hour train ride and a mile and a half walk later, I usually need part two. If I ate it all at once, I’d have to choose between spiking during the train ride or crashing during that walk later. That probably isn’t how I would do it if I wasn’t diabetic, but it gets the job done and it’s a fair compromise.
Not much. Like Zoe, I live alone, so I’m mostly battling with myself. But when it’s at work or with relatives, I usually have to apologize for being moody later. This is one of those things that can stress a relationship. For his part, he is going to have to understand that this is not the real you, and that he shouldn’t engage you more than necessary while you are low, and for your part you are going to have to let him vent his frustration to you later without your becoming defensive. Diabetes is so personal to us that this can be tough. Even without diabetes it’s tough to admit when you hurt some else even unintentionally. But, even when it isn’t our fault, we owe it to others to own up to it when our diabetes affects them and let them express how they feel.
I hope you can work this out! The insulins usually have the same activity, but they sometimes peak and poop out on different time frames. That can be a HUGE difference in how you do things. It can be like starting over. It’s totally up to you whether it’s worth the money or not to go back to where you knew what worked.
Erin – Hang in there! Sorry things have been so rough for you. I think I understand how you feel. I’m the mom of a type 1. When she becomes low sometimes she is very disoriented. She is almost always incredibly sleepy when low…scary - and turns off alarms or doesn’t hear them. I’m sure your hubby understands you can’t help but act different when you are low - he is just worried about you.
I find that reducing basal a tiny amount (5-10%) make a huge difference in lows. We use temp. basal for this.
I am also looking for ways to make our cgms alarms more noticeable. Someone here recommended the Sonic Boom alarm (sounds terrible, doesn’t it?) You can customize it to blink lights, vibrate mattress and/or siren when it hears your cgms alarm. Maybe something like that would help alert you to your lows?
I’m sorry you are having the problems. One suggestion I have for the person trying to help you question would be to encourage them to put the food out without the discourse, lecturing, etc.? I usually get the munchies pretty hard when I get really low and will likely eat something that’s sitting on the counter but, if someone talks to me about it, can run into situations?
I am very conservative during the day during the week. I eat pretty much the same thing most days and don’t mix it up too much. For me, that makes it easier to keep my CGM pretty flat and smooth. It also helps me keep my weight in line, helps cholesterol, etc too. That being said, I come home and work out reasonably hard and then eat 'normally" in the evenings when I have time to watch my BG closely.
