I’ve seen a lot of people’s A1C’s and they are really good. My last was 13…not very good. My last doctor’s appointment was so discouraging that I didnt even go down for my test. I want to be better, but I am really struggling. It has become so much easier for me to not check and even not take my insulin…being in the 200’s doesnt feel bad to me anymore. How did anyone get out of this pattern? I dont have a lot of support from my family, they don’t like to be a part of helping me since I’m not the most patient person when I’m high, yet I desperately want help. I am about to make a major move…next week…to be closer to my boyfriend who is really supportive but when he asks what he can do I dont even know what to tell him. I am recovering from not taking my insulin in order to lose weight- its hard for me to talk about with him although he knows. im sure there are plenty of people out there who have been throug this…
Hey Liz! A lot of people have been where you have been and it takes knowing you need to make some changed to take the first step. I haven’t been in your particular situation, but I would say start with checking your blood. Check check check. It will just help you be more conscious of what is going on in your body and point you in the right direction of what needs to be done insulin wise. Also talk to your doctor!! He is there to help you and hopefully he is one who cares enough to help. Also, try not to compare your A1c or BG numbers to other people. Sometimes that can be very overwhelming. Just focus on yours and making the improvements you need. Lots of people are on here to give you tips and encouragement.
So from a fellow Liz in Illinois, GO LIZ!
Hi Liz, The good news is that you want to be in control of yourself. Now it just needs to become habit. You need to tell the diabetes what to do, not let it control you. You sound like you may be strong headed (welcome to the club) and you should not let something as controllable as T1D lead you down the wrong path. YOU are in control of it. I know that sometimes being in the 200’s doesn’t feel bad, but in the long run, it doesn’t exactly feel good either. You can do it!
From another semi-member of the “Liz Club” Christine eLIZabeth.
I’m right there with you Liz…I’ve had diabetes for 22 years now (I’m 24)…and had PERFECT A1c’s until the past year or two. I have to talk myself into checking my bloodsugar, but I never miss a shot.
If there is any help…I understand what you’re going through…and we can both get through this!! It is just a mind over matter subject…and there is not really a choice but to check your bloodsugar and give shots (or pump) at this day in time.
Start with one step at a time…check your bloodsugar…start taking insulin…and before you know it…your A1c will be down in no time
Hi Liz! Welcome to our community!!!
I think that like all changes, it is best to take it one step at a time. I think that testing is a great place to start because it tells you information that you can use to take care of yourself. Or start by committing to taking insulin every time you eat.
We have many members who have been through what you are going through… so you are NOT alone!!! Keep us posted on how you are doing!
First of all, don’t beat up on yourself for the past; that only makes things worse. You have taken an amazing first step in posting on here and stating you want to work on this. Just making that statement is the start of creating that reality in your life. I’m glad your boyfriend is supportive and asking what he can do. I would suggest starting by making this statement to him as well. Be honest about your problem areas (like not taking insulin to lose weight) but then move on to what you want to do to improve things. What he can do for you is to be literally “your better half”. When you are feeling unresolved or shaky he can remind you of what you yourself have said when you were feeling stronger. So first set some goals. Not long term ones like “getting my A1C below 7.0”. That is overwhelming. How about just like people on here are saying, texting x number of times a day or taking your bolus every meal. Even write those things down and give him a copy. So when he gently reminds you of one of your goals it isn’t him “being naggy” but him reminding you what you yourself have decided. Start as slow as you need on the goals to make sure they are achievable and not overwhelming. Then just work on those goals for a period of time until you feel more confident to move on to something else. Determine blood glucose goals that are better than you are doing now and when you’ve started to meet those on a regular basis, move forward. Get support anywhere you can: this board, other friends and if you feel you have an eating disorder get support for that too with a counselor or by attending OA meetings. And I agree, don’t focus on other people’s A1C’s only your own and working on slowly but surely getting it lower. You can do it!
You are here and you are willing to take care. You have it all in your hands and we are glad to help you: step by step.
Wanting to take control and having the courage to ask for help are the best first steps that you can take. I agree with the other posters, check your sugars. It will give you a good base line, and when you finally do start taking insulin again, it will feel like youre on the roller coaster from the beginning again (I am just now back on my insulin regularly, and my head has been aching since I’ve been keeping my sugars where they’re supposed to be). But it’s worth it. Take care of yourself and remember that there are tons of people here to support you. And talking to your boyfriend is good. Even if he can’t make you check BG or take your insulin, just knowing that he cares enough to be there for you may be enough to help you out. Good Luck.
So glad you are here:) Know that almost everyone hits that point in life where it is just too much. For me it was my early 20’s. The good news is that once you face that point…you make changes and prioritize yourself. You will find the resources you need and surround yourself w/ people who support your goals. Shortly after my really low period, I found a much better doc and started on the pump. The pump made all the difference:) gave me back my energy and good attitude. Sometimes I think we minimize how crappy we feel when blood sugars are variable and high. Take care Liz…and know you have found a wonderfully supportive and helpful community:) Ask your questions and figure out what will work for you. I have found this community is something I never got from my medical team…best control I have ever had and feel much better about how I achieve it = on my terms.
Many of us have felt what you feel now. Being HERE is probably the best thing you could do. The support here is amazing and also is all the information available to help you. Please don’t give up. You are young and have many good years ahead of you. By turning your back on the issues you will only make it harder later on. There are many good groups here. Join some. There are groups for weight loss that will support you. try joining the TuDiabetes Weight Loss Team. I wiss you lots of luck. Just realize its a long road and this is your starting point. Strive to make small changes and you will see improvements. We are all here for you.
Don’t take this the wrong way, but I think the first major diabetic kick in the butt will change your attitude rather fast. Again, please do not take offense to this; I don’t mean it to be mean in any way.
A very long time ago I skipped insulin shots all the time (mainly my night shot, basal). Eventually that led to the worst DKA I’ve ever experienced and let me tell you it’s a ride through hell you don’t ever want to take. I’ve had plenty of those in my time, but never anything like that.
Alternatively your kick in the butt could end being a chopped off foot, blindness, or kidney failure (does dialysis every couple of days sound like fun to you?).
I know this seems like a whole bunch of scare tactics meant to set you on the right path, but unfortunately they are a reality we do have to face.
Control over your BG is easier than you might think. I’m not saying it’s easy, just easier. Something that made it tremendously easier for me was the insulin pump. It’s like taking one shot every three days instead of 4 (or more) every day. You just push a couple of buttons and you’re fine.
On the not-so-serious side you can also have a baby. It’s amazing how quickly your perspective changes when it’s no longer just your life on the line.
Get Think Like a Pancreas and/or Using Insulin (get Pumping Insulin if you are on a pump). I read Think Like a Pancreas first, because I liked the title better, and it is therefore my favorite. It has some great statements about not expecting perfection out of yourself, because it is impossible to be perfect. It gives suggestions about setting reasonable goals for yourself. It talks about the things that affect your blood sugars (stress, exercize, food, caffeine, illness, menses, lack of sleep, etc). You can get them both at Amazon.com. I also got a digital scale to weigh my food. You will want one that weighs in grams.
I started tightening my control by checking my blood sugar before dinner and then before bedtime. That way I could make any correction before I went to sleep. Then I started checking every morning to make sure my sugar was in a good range during the night. That way I had at least half good blood sugars. I started working on carb counting. We can always hone that skill. By the way, don’t try to hone the blood sugar figuring skill for about 3 or 4 days during the month (right before your period starts). That will totally screw you up. Send me a message and I will give you more details if you don’t know about that.
Also, there is another website www.1happydiabetic.com. I find his videos inspiring, because he always ends them with “You can be 1 happy diabetic, too. It’s all about your attitude.” His last video said “Keep your head up, your sugars down, and you can be 1 happy diabetic, too.”
You may want to take classes with your boyfriend. A lot of hospitals have hospital-based programs that last from one class to 6-8 weeks one night a week. Doctors’ office may even offer educational materials/classes themselves. Buy a couple copies of some very basic books and read them together (at the same time) and discuss any questions and comments. What you need to do is to be together. That will make a connection right there.
There is no magic formula to get your butt going to do what you need to do. Some people are motivated by hearing of success stories. (But don’t get discouraged if their way doesn’t work like it did for them.) Some people need to have the bejeebers scared out of them. Hearing how NOT doing what is required will affect them with complications. For this one, you may want to take a look at my story on my page and read the blogs entitled "Saga of 2009, parts I-IV). If you’re not scared silly by then, you’re a woman that can watch scarey, creepy shows all night alone in a thunder storm!!
Whatever you do, don’t ignore your readings. I have been running high lately and wasn’t wanting to see the endo’s Nurse Practitioner. But we made it through and I found out that I could be running high because I don’t change my infusion site in three days. Then the insulin gets too warm and tends to be less effective. Now that’s what I call encouraging. Also, one of my worse habits is to put the pump on “Suspend” and forget to reactivate it for hours, sometimes all day!!! Talk about dumb. I should know better!!
I can’t give you advice about losing weight because that’s my biggest problem right now. Just stay active and cut down on food intake. I can’t stay really physically active because of my disabilities. The most I can do are some really pansy exercises in a recliner.
Good luck and keep in touch to let me/us know how you are doing.
Lois La Rose
Get a plan going with your doctor & possibly a nutritionist. It’s not insulin that causes weight gain, just watch your diet & exercise. Nothing is worth the high sugars, constantly check your numbers…you can get control! When I was first diagnosed I was 11.4 A1C now and in DKA…real bad! Now I have managed to get it down to a 5.4 A1C…I wont let this thing beat me…hang in there!
Liz, it’s hard to correct everything (I know, I’ve tried). Maybe work on having your blood sugar within a reasonable range first thing in the morning. That may mean, giving up snacks the evening before and testing before bed as well as when you get up.
Is part of the problem, that the tests are too painful? Because there are some really nice lancet devices out there now. A number of us are using the Accu-Chek Multiclix, that might help you a lot.
FYI, I’ve had diabetes for 37+ years. And thanks to ‘reasonable’ control I’m pretty much complication free.
14 years ago I was exactly where you are right now. I have always had problems right from being dx at 3 years old which was hard on my parents. But when I turned 13 my mum was told she had to loosen the reins and let me start to control the D. It was possibly the worst thing that could have happened for me. I rebelled in every way possible. I ate what I wanted (not in front of others) and started skipping insulin. I had a blood testing meter but I never used it but my A1Cs were coming back at constant 13 and 14. I didn’t see why I should have to inject when no one else I knew had to.
Just after my 18th birthday my sugars were so high that I lost 56lbs in 4 weeks. I also had proper anorexia combined with diabulimia and I can’t describe to you how bad I felt. Actually no I can. I tried to kill myself with an overdose of insulin on 4 occasions. (only 2 other people knew this and I have just shared it with 12664 people)! It was the first proper insulin I had had in years. My turning point came when I went to see my diabetes nurse specialist and she asked me if I would mind doing a test in front of her. I was so embarrassed when it came back at 900. But she didn’t chastise me. She asked me to come home and pack a bag for a week and voluntarily go into hospital. Not too much of a big deal until when I got there I found out that they had kicked someone out of a private room on a mens ward for me to have that hospital bed. I was at my lowest point.
There was no miracle cure. My A1Cs started running just 1 point lower but I also had to learn to eat again. 5 years later I had been renting a house with my (now) husband and we decided to buy instead. I had to go for a medical to get life insurance and I was told that my kidneys were leaking protein caused by the diabetes. I was devastated as I knew what it would eventually mean. I was told it had been caught early and I would have about 10 - 15 years before I would need dialysis. Now 9 years down the line I have been told I will be on dialysis before this year is out. (and I never got the life insurance an no one will cover me).
I started on the pump in July 2009 and it really has improved things. I started honestly trying to control my blood sugar 2 years ago but I had severe hypos with it and I wondered if it was all worth it. This was because I had also got a condition called gastroparesis which slows down your digestion. This was again due to the D. Being on the pump has corrected the gastoparesis and my last A1C in Nov 09 was 8.1. Not great I know but I haven’t seen figures like that in years and it improves a little every time I have it done.
The reason I have been so honest with you is because up until 2 years ago I didn’t know anyone else with diabetes so for years I never believed all the talk about complications and I was certain it would never happen to me. Now look. I have also had neuropathy and retinopathy for years. Due to the problems with my kidneys I also had to have a total hysterectomy last year. I am only 32 and we don’t have any children. I don’t want sympathy - it is all my own doing but if me being honest stops you or anyone else making the same mistakes, I will shout it from the rooftops.
If I had my time again I would do everything by the book. You are still young enough to do that. I wish you all the best for the future and please let us know how you are getting on.
Welcome to the rollercoaster ride that is diabetes. Like everyone else has said - you have taken the first very difficult step and acknowledged that you need help. You even know what your weaknesses are. For some people that is the most difficult thing to discover.
Patience is not a virtue to many people. Take advantage of your support boyfriend. I concur with one poster that you and he should find a diabetes class or support group. The more he knows about what you are experiencing and trying to figure out the more supportive he can be.
Your body will acclimate to any situation over time and that is why you think you feel OK with your blood sugars in the 200’s. Getting your number even down to the 180’s on a regular basis will give you more energy. Now here is the critical piece to doing that:1) you need to test and 2) you need to take your insulin. I have been right where you are. I have a day in college that I don’t even remember - but I signed into the infirmary and saw the nurse. My blood sugars were averaging 400 - being a full time nursing student and starting my day with an ice cream cone and a diet Coke didn’t help either After graduating and becoming a nurse I worked several summers at a diabetes summer camp. There was one of the “house” endo’s who had a really great perspective on management, especially A1C’s. What he said was "don’t dwell on the result. It measured the last 3 months. OK, so it isn’t great/good. You now have another 3 months to make a change. Make a change. Don’t expect it to be drastic - you are setting yourself up for failure. You have the rest of your life in 3 month increments."
Like anything you want to make a habit you have to do it religiously until it become routine…and believe me it will.
Find yourself a Certified Diabetes Educator - make an appointment and start that process to better health.
I admit, metabolically, that ketosis secondary to the absence of insulin will cause weight loss but the hyperglycemia that goes hand in hand with it will also cause coma, blindness, kidney failure,etc,etc - just stating the obvious and not trying to scare you. If you really want to use ketosis as a weight-loss program it is doable but it requires frequent testing so that you do not become hyperglycemic as well AND youhave to have a good understanding of how insulin affects your body.
Know that stress is directly linked to hyperglycemia. Although it sounds like your move will be a positive experience it is still a stressor if only subconsciously and it will cause your glucose levels to rise.
Last thought - get your blood work done, test your sugars frequently, adjust your insulin accordingly, write your results down when you test (sounds stupid but having them written down helps you to see how you have been doing and help to recognize trends), make some “me” time to relax and finally reach out to us and/or your bf as often as you need.