Please help me

Type 1 and LADA
#1

Hello everyone,

I joined this community a couple of days ago and the welcomes and mesages have been great! To that end, I am very encouraged and feel like maybe I can get better at this “diabetes thing.” Especially after reading some of the other posts. So thanks.

Please be patient and bear with me.

To wit, I am 52 years old and my diabetes was discovered when I was 6 months pregnant with my last child (he’s now 21). Of couse I was shocked and angry but I followed all the rules, was very strict with my diet and exercise. Consequently, I delivered a big (9lbs. 13 oz baby) healthy baby Although I am slender and with a medium frame, my son’s father was a big guy (6"6’ and 300 lbs) so we weren’t surprised he was big.

So, after his birth, I had a “honeymoon” period of about 2 years then the diabetes came back. So, they have classified me as a Type 1. I’m saying all of this to say that now I am not a very good diabetic. My previous H1AC was 11.5 but this month it was 9.5. Still very very high, I know, but has come down some. I walk for an hour each day, sometimes I do exercise videos. I’m not a big eater (previously suffered with anoerexia many years ago), don’t eat a lot of carbs, eat fruits and vegetables and the like. They have diagnosed me as a “brittle diabetic” because my sugars fluctuate so much and can go from too low to too high quickly. I am on a sliding scale of Humulog (3-10 units depending on the amount of carbs I’m eating and 34 units of Lantus at bedtime, also 1600mg of Glucophage, which I don’t think is helping me at all)). In the past I have been in the hospital frequently with DKA and once was in the hospital for 2 months because of it. However, that was at least 3 years ago.

So the end of my story is that I would very, very much like to regain control of my blood sugars. It’s begininng to get the best of me - I am depressed and feel like whatever I do to follow the rules best as I can, it’s not good enough and makes me fell like a big failure. I’ve done so many other things in my life well (strong woman, raised four kids, have 5 grandchildren, had a lovely and exciting career). I am scared to death of the complications that this disease can bring; mainly, dialysis and blindness. I feel fortunate that these things have yet to occur. I have recently re-enrolled with the Diabetic Care Coordinator at my hospital and I have taken different diabetes classes in the past. So, do you all have any suggestions on how to take steps to regain control and improve? Thanks for listening and sorry it was sooooooooooooo long!

#2

Don’t let them label you brittle. Your doctors haven’t found the right dosing & regiment for you. You’re not a failure!

Are you counting carbs? Sliding scale is rather out of date. It doesn’t match carbs to insulin, so naturally your BG goes all over the place. Even with matching insulin to carbs, it’s an art as much as a science & not an exact science at that. Timing of insulin is important also.

How many carbs do eat daily? Many of us have a difficult time with fruit in any quantity.

Second Dave’s book suggestion. Also check out Jenny’s site & book http://www.bloodsugar101.com. They’re wonderful.

#3

I never cared for the term “brittle” as there’s really no medical/scientific definition for what that means. It’s just a word thrown around to describe a person that hasn’t yet found the right balance of diet, exercise, and insulin. It is NOT an irreversible physiological condition that means you can’t have good control. So don’t let that word cause you to give up!

The good news is that you are motivated to get good control. That’s the biggest part of the battle. Those with an attitude of “I’m probably going to die from complications soon, so why even try?” are self-defeated. The other good news is that you improved from an A1C of 11.5 to 9.5. That’s a huge success! You still have further to go, but it’s a big step in the right direction.

If you are a “strong women” like you say, then you need to take responsibility for your own disease. Few Doctors or CDE’s have actually lived with the disease, so the best they can do is give you pointers here and there. It’s up to you to educate yourself in good management. I’d agree with Dave, get the book by John Walsh and read it.

You’ll need to learn a few key things and you can significantly improve your control.

  1. Learn to count carbs. Different kinds of fruit and vegetables can have surprisingly different amounts of carbs. You need to know them so you can dose appropriately.
  2. Test your BG frequently. Before every meal and 2 hours after every meal. Keep a written log of these. Pretty soon you’ll see patterns (e.g. you always go too high after breakfast) and be able to adjust for them.
  3. Small adjustments (e.g. meals, exercise, insulin) are much easier to manage than big ones

Don’t apologize for your long post. Diabetes is a cruel disease and we’ve all experienced those times of depression it can generate. This site is a great place to vent them and to learn from the experience of others.

Ken

#4

I was labeled brittle, too. When I stopped eating fruit and started counting carbs and researching my reactions to little amounts of carbs to see how far I went up with just a few carb grams, my body responded positively. I decided I didn’t want to eat so many carbs! Is your Lantus set so you’re in your target zone between meals? If so, you can try seeing what a small amount of carbs do to your blood sugar. When you know that, you can start setting up how many carbs you really want to eat each meal. And you can add shaved ham, Morningstar links, and a host of protein tid-bits and nuts and you won’t be hungry. Just be sure to reduce your Humalog as you reduce your carbs! Differences in carbs means differences in insulin dose.
Let us know how it goes! We don’t mind l-o-o-ng.

#5

OMG. Thank you so much for your message. I started get teary eyed reading it because your support and tips and kind words meant and will continue to mean a lot to me. I’m sure I’ll be re-reading your reply from time to time. Indeed, you are correct when you said I need to take responsibility for this condition! I tend to have frequent “why me’;s” (and not my 2 other siblings, and blaming my mom (its from her side of the family.) LOL I am going to start with all the tips you gave me. The only thing I do with expertise is test my blood sugar (smile). Counting carbs and the mini meals, I think, are excellent beginning suggestions. Will purchase on of those books that list how many carbs are in each item (well, mostly all) things we eat. Thanks so Much Ken. I appreciate it.
l
ol

#6

Thank you Dave. My next site visit will be Amazon.com!

#7

Thanks Gerri. Will do.

#8

Ken,

Another question. Do have an idea about what to actually eat during a "small or “mini” meal. Does that mean 1/2 sandwich, cup of veggies, cheese and crackers, etc.? I do realize that everything I mentioned is carbs.

#9

I’m not sure (because I’m still learning how to navigate) but there were three replies I sent to Ken, Gerri and Leo that I don’t know if they actually got to you all. When I looked it said “Mimi Copeland replied to Mimi Copeland.” But hopefully you all can figure out whose is whose. LOL

#10

Hi Mimi,

You’re navigating around perfectly. You’ll notice that sometimes you reply to one person & the post ends up further down the page. I think that there can only be so many number of replies to a reply, if that makes sense.

Who told you to eat small or mini meals? Depends what the half sandwich is, how many crackers, what vegetables are in the cup:) A cup of carrots or peas has a lot more carbs than a cup of cucumbers.

Counting carbs is the key to dosing insulin & getting control. You’re probably eating a lot more carbs than you realize. Grains (bread, pasta, cereal), beans, milk, fruit, juice & starchy vegetables are high carb foods that raise BG quickly. Low carb foods are eggs, nuts (almonds, walnuts, pecans & seeds), cheese & cream. Lean proteins are important to keep from being hungry. There are lots of low carb vegetables, but even with them portion control is important.

We’re told to follow ADA guidelines of 45-60 carbs per meals, plus 15 carb snacks. For most people, this is too high carb to control BG.

There are on-line carb counters to help. Don’t trust package labels. I bought an EatSmart scale & it was the best investment.

#11

Learn as much as you can about your T1D and keep up with the latest technology and treatments. That is a big challenge and I think a good start is to read “Think Like a Pancreas; A Practical Guide to Managing Diabetes with Insulin” which has a great description of how everything works and guidelines on managing D.

Here is a list on Amazon from tuDiabetes: “http://www.bestdiabetesbooks.com/”

#12

You have received wonderful advice, Mimi. People here on Tudiabetes are always willing to help… Use of the term “brittle” diabetes, and sliding scales treatment are definitely out of date .
Are you bring treated by a general practioner or an endocrinologist? I would advise seeking out andendo for your diabetes team, as well as a Certified Diabetes Educator . And you must learn how to count carbs, adjust insulin/ carb ratios,administer accurate corrections, then log and log and test and test to get your levels evened out for several week ( or more), It will seem overwhelming, but you can do it:. But once it becomes “Old hat”, you will be amazed how quickly you become accustomed to the procedures

You have made great progress in lowering your A1c… Hooray!! We are here to help out.

God Bless,
Brunetta

#13

Mimi - the responses everyone provided are spot on. I’d like to add just one additional thing. My BG levels fluctuate a lot, and very very quickly too - but it’s kinda’ intentionally self-induced. And it’s not the end of the world. I ride bicycles a lot, and I need to eat lots of carbs to do so. When my carb/insulin plan get’s out of whack, I see big highs or big lows. The lows are pretty infrequent, but I’ll see a nasty high fairly often.

I deal with all this with careful planning, thorough record keeping, and a pump. And the knowledge that a high or low can be overcome. When they hit me, I figure out what the probable cause was, make note, and try something different next time.

BTW - I’m planning on making my 50’s a great decade. Year 1 has been awesome. Hope yours can be too!

#14

I concur. “Think Like a Pancreas” changed my life. I realized that my problem was that I wasn’t properly educated. It describes things really well and it uses some humor. It reminds us to not be too hard on ourselves. My A1c dropped from the high 8’s to 6.8 in 3 months. My doctor smiled, probably for the first time, when he saw those results.

Warning, though, I needed glucagon when I was tightening control. I had a seizure and then called the doctor for a prescription. Better to have it in case you have a seizure, assuming you have someone beside you at night to administer it.

Also, make sure you have as many strips as you can so you can test more often. Typically my insurance company pays for 100/month max. My doctor called and got an exemption for 200/month. That way I can test almost 7 times per day. I probably check 6 to 10 times per day. Find out how many you can get, and test as often as you can. I have hated testing for over 25 years, but I would rather check to often than have to go through dialysis. You have to be prepared to test a lot. I know you can do it. You have us at your fingertips. = )

#15

Hi Mimi –

I’m also here hoping for motivation and support to get better control! My last A1c was also in the 9s. I use an insulin pump, which means that my control should be so much better. I don’t have any sort of good routine with my diabetes, but that’s my big resolution fo 2010 – to get my health in control.

I was diagnosed in 1996. My mother was also Type 1 and she had been testing me and found my blood sugar readings to be in the 400s. So we went to her doctor and boom, I was put on insulin. I have since had two very healthy children (my son was also 9 lbs 13 oz!) - my diabetes was never in better control than it was when I was pregnant.

Since then, though, I’ve seen my control fizzle out. I am going through a divorce (have been for 4 years – it’s not bitter or anything, we’re just slow), lost my job, and have been fighting depression, so my motivation to take care of my own health isn’t really strong. I know that can’t go on, though – I saw all the complications with my mom. My mother was a brittle diabetic too. She was a double amputee, had two heart attacks and a quadruple bypass, had retinopathy and ended up on dialysis (I’ve missed some complications that she faught). Unfortunately, she died in 1999. But her story started differently – she was diagnosed in 1957, at age 12. The only glucose testing was urine testing, so it wasn’t very precise. Her parents also didn’t learn how to help her. I think a lot of the damage was done early. So it was an extreme case – you would think I would be scared into strict control but NO, I’m not. (I hope I haven’t scared you with her complications. Because her case is really different!!)

Anyway, I just wanted to say hi and ended up writing you a book! I hope you’re well today. If you’d like to write back, feel free!

Melissa

#16

Hi Everyone,

I just want to thank everyone again. After the advice about counting carbs - well, I started doing that for the rest of the day for every meal, counted carbs. it’s only been 3 days now but the responses to my bs have been overwhelming. For two days now, I have not had a blood sugar over 140. Fastings are much lower (85-94) and after lunch has been 120-140. I’ve also increased my exercise. I’m doing cardio with weight sculpting.I actually do feel better already. LOL. One thing I notice is that with my bs in the normal range, I feel a little weird. Sometimes I think I’m having a low, but in actuality I’m in the normal range. I’m so encouraged. I’m looking at this like a new beginning. I’m determined and trying to get a lower H1AC. I realize this is not a “miracle therapy” and I will have those days, but all and all I’m not feeling so overwhelmed. MUCHISIMO GRACIAS GENTE (LOTS OF THANKS PEOPLE)

#17

i would take blood glucose readings at breakfast,lunch,dinner, late night snack (9 or 10pm)
based on those readings you might have to adjust your humulog dosages (maybe 6,8,10) or maybe (8,10,12)
talk to your doctor. maybe your sliding scale starts too low. might need a higher sliding scale.
dan

#18

Welcome Mimi!! You have come to one of the biggest support websites re: Diabetes. Here you will find support and resources you need to get control of your Diabetes. I’ll share this with you for many years I didn’t have the foggiest how to manage my Diabetes. But once my Endo referred me to a CDE (Certified Diabetes Educator) I was finally able to manage this beast.

#19

i use the sliding scale… only cuz i had to figure out my insulin to carb ratio…but i like having it around in case i guess wrong on carbs…