Another new person joining the club

Type 1 and LADA New to Type 1 Diabetes
1

Hello everyone! I'm Elena, female, 40, and was diagnosed Type 1 (or maybe LADA) on 9/30/2014. It's been an interesting ride since then, to say the least.

I think I am still in the grieving process--it was several weeks before I didn't cry EVERY day about it, though I can still get teary and depressed pretty easily. I had been having prediabetes numbers for about a year prior to diagnosis, which the doctor and I both kind of pooh-pooh'd since I don't fit the mold for type 2 (I'm 5'4" and 110, no family history). But I had blood drawn on 9/30 and my fasting blood sugar was 288 and my A1C was 9.4. :( He started me on Janumet but I took only maybe 3 doses of that before he realized that I was more likely type 1 (I had major ketones, though my numbers were "only" in the high 200s with a couple of excursions into the 300s). Now I'm on Lantus at night and Humalog for meals.

I think the hardest part for me is that I actually feel a lot worse since diagnosis. I have had quite a few well meaning friends ask if I'm feeling better now that I'm being treated, and the answer is honestly no. I didn't feel bad at all at diagnosis. I only had two notable symptoms--I had lost 6 pounds in about 2 weeks without trying, and I often had trouble coming up with the correct word when speaking (several times daily). Now I've gained the weight back and most of the time I can speak correctly (unless I'm thinking about a million things, which I usually am!). But, oh, I feel terrible most of the time.

I feel depressed and discouraged. I feel broken and tired. I'm sick of counting carbs and worrying over whether or not this dose of insulin is going to work well or kill me. I miss so badly the freedom to eat just when I felt hungry, and trying to pick a relatively healthy choice but otherwise not really thinking about what all was in my food. I was able to get a Dexcom in November, which has mostly eliminated my terror about lows, but I still worry so much about everything.

I had my first post-dx A1C done on 12/30 and it was 6.7, which is definitely a lot better. But all that did was tell me what I had done in the past, now I face another 3-month period of stressing over whether or not what I'm doing is working or not. I'm feeling terribly emotional today--most days I can keep my numbers in decent ranges but last night after dinner it went to 270 and hung around there for a couple hours, so I ended up taking a correction. Stayed up until midnight to make sure the correction wasn't an overcorrection, and slept terrible after that. Then breakfast numbers went crazy, lunch a little less so because I purposely underbolused for my meal, but even so I'm just now down to 140s 3.5 hours after lunch. It isn't my monthly, and I don't feel like I'm catching anything, except that I feel lousy just overall.

Here's your Tl;dr--I'm new to diabetes and I hate it. The End.

2

Hi Elena,
I'm sorry you are going through this. I was very depressed when I found out I was positive for antibodies and was in the early stages of LADA, but for me it's easier to get used to the idea that someday I may be on insulin because the progression seems to be slow right now. I think having high numbers at diagnosis, going on insulin and the diet restrictions all at once must be a huge shock. I can't relate to that other than being very depressed at the news. I'm sure things will get better as you get control of your numbers; it may be helpful to know that you are in control. You said that you had prediabetic numbers a year ago. Do you mind sharing what they were ? Take care and you are in good hands here!

3

I had a random blood sugar test (it was just the normal Chem-14 panel), done non-fasting. I actually had started drinking a sugared soda before the blood draw because I was afraid of fainting. :/ My blood sugar then was 170-something.

After that my fasting blood sugars were just over the "prediabetes" range, in the high 120s. My A1C was 5.8 (awesome for a diabetic, not so much for a nondiabetic).

I have not had any antibodies tests done, but I have had a C-peptide, but it was done non-fasting. That number was 0.8, which is the bottom number on my lab's reference range. I know I have a wonky immune system, though, I have vitiligo and have had two episodes of Graves' disease during my 20s and early 30s.
4

Hi Elena,
I'm glad you found tudiabetes! I was diagnosed with LADA in 2010 after going into DKA(diabetic ketoacidosis) and spending 3 days in the hospital. I was lucky in the beginning in that I only needed Lantus and Metformin for the first 2 years. Then my honeymoon ended over a period of 2 months, I went from an a1c of 7 to 10+. I fought going on MDI through all of 2013, big mistake, I felt like crap that entire year. I've been on MDI since January 2014 and now am on a pump. I started feeling much better after I started intensive insulin therapy, it still took a few months before I was sleeping good though.
The main thing that helped me the most was reading "Think like a pancreas" by Gary Scheiner. It answered all the core questions I had about insulin therapy and the choices I have to make on a daily basis. Finding this site among others has helped me to realize that my daily struggles with LADA aren't unique and that I'm not alone in this. I've also found a local T1 support group in my area that gives me a place to go and talk face to face with people like us.
This disease can definitely get to you, but I have to keep reminding myself when I see an "out of range" number is that it's only temporary, learn from what happened(if I can figure it out), correct and move on.
It sounds like you are on the right track so far!

5

Thank you! I'm guessing I used a lot of my honeymoon period up when my doctor and I just kind of ignored my iffy results. Though I definitely appreciated the fact that once my numbers were straight up terrible, I was able to get on insulin right away.

I think I got Gary Scheiner's book on my Kindle within a week of diagnosis. I have been a voracious reader of all things diabetes on the internet, which can be good and bad, especially considering that I was already kind of a hypochondriac before all this started!

What made you decide to switch to a pump? In the four months since diagnosis I have gone from "no way will I ever get a pump" to "I wonder what pump would work best for me?" I am covetous of your ability to microdose. :)

6

There were two main reasons why I got a pump. Mainly it was for my basal, I have 3 distinctly different times of day where my needs change by 15-20%. With Lantus, that single shot ended up causing me to run low many nights while doing fine during the day, even splitting it had little to no significant effect.
Second is having my insulin with me all the time, no matter when or where I want to eat, I just check my bg, push a few buttons on my pump and I'm done.
It also doesn't hurt that you can take very small doses with a pump that you just can't do with a pen/needle. I don't require much insulin(25-27u TDD) so minor corrections are all I need, even a half unit too much can send me crashing.

7

Thanks for the info! I've noticed a similar thing with Lantus--if I'm stable overnight, I go low in the afternoon before dinner. If I wake up a little higher than I'd like (130s) then I can stay stable in the afternoon. Obviously pumping would be a way to get rid of that problem!

My TDD is also pretty small, I'm around 15-17 units a day, and I'm a fairly small person.

8

Elena,
I was diagnosed very young (age 6), so I don't really remember it and can't speak to the emotions of diagnosis. I can say that up until recently, I wasn't taking care of myself, and was running my sugars very high, 300-400s. After bringing them into normal range, I felt awful for quite a while. Our bodies get used to the high sugars and sort of make that their new normal. When you bring them down, it takes a while before you will start to feel ok in range. I can say, after some time in range, I feel so much better. Now, when I run high and come back down, I feel so much better with the in range number. This wasn't the case for quite some time.

With time, counting carbs and everything else that comes with diabetes will become second nature. I can look at a plate of food, and without even giving much thought to it make a pretty accurate judgement of the carb count. That does get easier. When I started carb counting, I had to look everything up, either on packaging, or in books. Now, I hardly use books, and most of the time, can guess the carbs in something before confirming with the packaging.

Don't beat yourself up over out of range numbers or worry of how you will do in the next three months. I used to beat myself up over every number, telling family what I was doing wasn't good enough, or that I had failed. Something someone here said a long time ago has really stuck with me. Unfortunately, I can't remember who said it, but here it is. Your readings are just data. They are not any kind of reflection on you. When you see a number, take it, use it to determine if you need to treat it (high or low), and let it go. It is just a number. Things happen, sometimes things we can control, sometimes things we can't, which all affect our sugars. Take action if needed, and move on from it.

9

Hi Elena -

It gets better. You'll probably build up some emotional calluses around your diabetes within the first year and the day to day stresses won't feel like such a burden. I still spend nights battling down a stubborn 200 but it only ruins the night not the whole week.

Getting your A1c down to 6.7 in your first three months is an accomplishment that you can take pride in but I would urge you not to think of every A1c as a test of your character or competence. Each test is meant to help you evaluate how you've been doing and to help you decide whether you need to make adjustments to your self care.

You are going to have diabetes for a long time - maybe even 50 years. Our tools are far better than those people with diabetes had 30 years ago and it seems that small improvements are made almost every year. Grieve but don't lose hope.

Take care,

Maurie

10
Your readings are just data. They are not any kind of reflection on you.

That part is so difficult! It's really hard not to feel like I totally screwed up when my numbers go high. Logically I know that since I ate the same thing yesterday and got good numbers, that means that something outside of my control is causing the high, I still feel bad, like minutes are ticking off of my life each time it happens.

And I'm very much looking forward to being better at carb counting. Right now my phone with the Calorie King app is my best friend.

11

Thanks for posting. It's nice to be around people who understand that the diagnosis is a loss.... but not completely. A loss of some of the freedom I had, but not a loss of good times, a future, etc.

12

I resisted a pump for twelve years! And now that I finally took the plunge a few months back--I knew it was coming, and I'd met my out-of-pocket for the calendar year, so it was free--I covet my new microdosing capabilities! Precise bolus dosing, bolus calculator, and granular control over basals are my three favorite qualities about my new t:slim.

13

I still struggle from time to time with negative feelings around an off blood sugar reading. It does get easier though. Even if you are beating yourself up, tell yourself it is only data. Even when you answer yourself with more negativity. Doing so will lead you to eventually go easier on yourself. It takes some practice, but as with anything else, practice makes perfect.

14

Hi Elena,
If I was there in person, I would give you a hug, because you sound like you need one. I know diabetes is scary and there’s so much to think about and worry about, but it does get better. Have you considered going to a counsellor? Particularly one who specializes in chronic illness? I see a therapist once a week and she helps me so much with the trials of living with diabetes.

I haven’t read it, but I have heard mention of this book called Dealing With Diabetes Burnout. Here’s the link: http://living-in-progress.com/2014/03/dealing-with-diabetes-burnout/ It might help you with some of the anxiety and depression you’re feeling.

I always get super depressed when my blood sugars go out of whack. Like this last month, I started a hormonal birth control regimen to help regulate my blood sugar (I get really bad fluctuations in blood sugar when my hormones do crazy things around menstruation). The first two weeks I had to almost double my long acting insulin dosage while my body adjusted to the hormones in the pill. My blood sugars were consistently over 300 and I just felt like crap, physically and mentally. I seem to hold my self esteem hand in hand with my success as a diabetic. When my blood sugars are good and I am taking care of myself, I feel good emotionally. When I hit a bump in the road and have trouble, my depression gets really bad. Bwcause I know this about myself, I have developed a mantra to help me deal. “This, too, shall pass.” I try to see life as a big stretch of road I’m travelling along and the things that are out of my control that make me feel terrible are just bumps in the road that I have to either go over or go around.

Some other things that help me with the emotional roller coaster are yoga, meditation and exercise. Honestly, exercising helps my frame of mind more than anything. You might also try to find support groups that meet in your area. Ask your doctor if s/he knows of any groups you can join. I would try to find a dietician or a diabetes educator with whom you feel comfortable working. They can advise you on the day to day troubles and on your diet.

Try not to get too hung up on having numbers outside your ideal range (I don’t like calling them bad numbers because that makes my anxiety about high blood sugar worse). Just do the best you can and keep that “this, too, shall pass” mantra going. It gets better, I promise. I have had Type 1 diabetes for 23 years and I’m 26 years old. You will figure out what works best for your body and learn to live with it.

I wish you the best of luck, Elena. You can message me any time, if you need someone to talk to.

Love,
Alex

15

I would second the idea of a therapist. I also see someone once a week for an hour. I went a lot of years on and off with therapists, and could never find one that I felt I could really work with. I usually got to a point where I wasn't feeling they were helping, and would just stop making appointments with them. I finally found a guy who is also a T1, and I think it has really helped me get to a point where my anxiety is reduced, and I am taking better care of myself.

I have read the Diabetes Burnout book, though its been so long ago now, I don't remember a whole lot of it. I feel like I remember it was a good read, though all of my diabetes reading tends to blur together.

16

Thank you! (And ryryguy392 also! Still figuring out the best way to reply to threaded posts :D )

Did I mention I live in the middle of nowhere? ;) Well, I exaggerate, but there isn't a wide range of medical professionals where I live. No endocrinologists (that's why I'm treated by an internist), no CDEs (actually, no diabetes education of any kind right now, not even type-2 focused classes), one nutritionist (who is associated with the hospital, so mostly teaches classes as opposed to seeing individuals), and very limited counselors. :( I'm in California so I could drive to see some other professionals, but 3+ hours and then dealing with LA area traffic doesn't thrill me. I'm considering doing some consults with Gary Scheiner's group, just trying to figure out the $$$ factor.

I have been exercising at home. I used to go to the gym before diagnosis and I'm kind of chicken to go back, afraid to have a weird low there.

I have always had issues with anxiety, particularly health anxiety. Germaphobic, worried I was having a heart attack, that kind of thing. But honestly, the one thing that always terrified me the most was getting diabetes. And then I got diabetes. So I'm having a hard time wrapping my brain around the idea that I DIDN'T cause it, this is just one of those weird things that happens sometimes. *sigh*

17

I worked one on one with Gary when I learned carb counting, started MDI, and then moved to the pump 15 years ago. If you can, I highly recommend him. He was great to work with, and very detailed when going over your logs and tweaking doses.

I have struggled with major anxiety around low blood sugars for close to 15 years. To the point of eating extra or not taking enough insulin. I also suffered with OCD around checking for a while. I was testing 40+ times a day. I've got a better handle on it now, but still have a hard time.

18

I'm sorry, but I'm also glad it isn't just me! I see some people post "LOL I woke up at 45" and I think, "I get nervous if I'm under 90!" :/

The Dexcom has definitely helped with the testing paranoia. Though I still struggle to make my 200 strip per month prescription last an actual month. :(

19

Welcome to the club, Elena! I don't know what's harder, being diagnosed when you're young and not remembering what it was like to eat like a normal person, or being diagnosed later where at least your body hasn't had to withstand the disease for long, but still not being able to eat like a normal person. The good news is, eventually you will get used to your "new normal". Carb counting is rough on a good day, but you are probably already starting to find that you eat a lot of the same foods regularly and are starting to commit them to memory. Thankfully there are a lot of good carb counting apps (I like the Carb Diet one for iPhone) that can help you in the process. Your first post-diagnosis A1C is excellent! Mine back in 1984 when I was 16 was a whopping 13-point-something, and my endo was afraid I wouldn't make it 5 years. But that was 31 years ago, and I'm still here and mostly doing really well. My control was lousy when I was younger, but I eventually got my act together, plus there is so much more information and technology now that can help us stay on track, and help us get back on the horse if we fall off at times. I'm sure your anxiety and depression are feeding your feeling lousy, but take heart that it will get easier in time, but you will still have frustrating moments. A lot easier. There are many great forums like this where you can vent to people who totally get what you're going through, unlike most people. Another one is the Type 1 Diabetes Memes group on Facebook, because these two women post all of these funny graphics, and keeping your sense of humor about this is really helpful. We hate it too, but it is what it is. It's the beginning of the rest of your life, as they say!

20

Well, I think this way is a little easier. I've got two teenage girls, and I'm really glad I had my kids before diabetes, I know you can successfully have children when you're diabetic but it was definitely one less thing to worry about that I had them before.

I've discovered the cause of the wonky post-meal numbers that started Sunday evening--I've definitely got a little cold. It isn't terrible, but it's there. I've upped my basal dose by a unit, plus I've altered my meal ratios so I get a little more insulin, and this afternoon I'm seeing my first sub-100 numbers in a few days! Dexcom says I'm holding steady now at 96. *thumbs up*

I'm holding out hope that this cold hasn't completely destroyed my average--keeping in mind that my 12/30/14 result had numbers in it from right after diagnosis, where I was 250-300 for about a week before I was able to get my numbers in order. Even with this cold it hasn't been that bad.

Thanks again to everyone. My husband and kids are great but it is hard for them to relate, I think.