Omnipod Occlusion!

General
21

Carly again thanks for explaining the process. It is wonderful that your numbers you started with worked so well  I am staying positive about the whole experience. I have nearly finished the booklet that comes with the pod. At times it seemed like a computer book and impossible to memorize all that information. But hopefully the CDE will talk me through the process.. I just read a posting by Caterina for Omnipod Occlusion and it is disconcerting But what I learned from you is the priduct you put on your skin before placing the pod and this might have prevented this persons problem. I will tell the CDE about the product..I am going to look it up on your posting..As far as dislodging in one's sleep I will just have to hope this will not happen to me. Plus I think the pinching up of the skin is important. It shows that in the handbook  otherwise it is not rooted in the fat.. I will let you know how it goes. Does the addition of fat help prevent lows for you as well ? I realized by keeping track of my Lantus doses in a book and writing a smiley face or frowning face on if the Lantus dose was right I realized that the problem I had is exercise at night. But sometimes I have had to inject additional humalog when higher blood sugars and actually felt better than ever. That convinced me that I do not get the amount of insulin a person should get and by taking extra humalog it was empowering. That is what convinced me to try the pump. I finally realized I deserve to have the drip drip drip :) of the pump like a pancreas.

D

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22

Carly  Also my CDE has Diabetes and has worn the pod for a long time.

23

No advice just wanted to say good for you on working on getting control!!!!! I haven't been diabetic very long. I have had a few lows but none to bad, 43 is lowest I think. Use your meter, keep some kind of low pick me up. I myself use food as my low fix if possible, ie: cheesecake, juice, etc. LOL I do remember right after dx'ed feeling low at 120 it was weird. Again just keep at it. You are worth it. 

24

Hello Kevin,

I still have my sugars bouncing around and feel so bad/scared when they get below 70. It took me awhile to get used to them being under 200. My endo took baby steps with me, giving my body time to adjust. It took time and I had days that I felt so weak but it got better. It took about three months to feel good in the range of 90-120, but now I do feel better and less shaky when they drop around 70, and not as scared. I don't know if you have a pump or not but despite my personal feelings about the pump it did help me, a lot! You can read my bio, just like many others I have been there and most of the time I run a bit high. I just bolus, drink water, and put the next foot in front of the other. Everyday is a new day and it's never too late to make changes.

We all have our down times. Just remember that you/we are not alone. 

Hope this helps you out. MaryMartha

25

What's with your fear of lows?  Did something happen?

First, congratulations on your decision to get your sugars into a normal range.  It's really so important.  See the post about "losing your manhood"! 

Now, do you know about how to understand how much insulin makes you drop?  I'm not on a pump, so I don't know how the pump folks do it, but it's important that you test your sugar sometime when it is high, give yourself a unit of insulin or two (I'm assuming Humalog), and then test again in 40 minutes or so to find out how much one unit (or two) of insulin makes you drop.  And you should do this a few times, because, for instance, if you do it after you've eaten something that is going to make your sugars rise constantly throughout the day, like pizza, you won't learn all that much.  Also, this tends to be different at different times of day.  But you have to get a handle on it, even if it's just a rough handle!  Then, you also have to find out how carbs affect you.  So when you're low, test.  Measure out and drink 20 grams of carbs worth of juice, then test in 25-35 minutes.  How much did it make your sugar rise?  Then, you can figure out how much insulin you have to give yourself for what you eat.  Or, maybe you already knew all of that.  If so, sorry.  I'm sure your doctor or diabetes care person could explain it better, too.

My advice is mostly this: test constantly.  Your body will stop feeling low when you're normal pretty quickly once you stop being always high.  My blood sugar starts to feel high at 120, but I was definitely not always like that.  I know that the only way to NOT succumb to thinking your blood sugar is low when it isn't is by testing before treating, always, at least until your blood sugars are in really tight control.  Test throughout the day.  If you don't know what your blood sugar is, test it!  Especially if you eat a big meal, you've got to give yourself some insulin, test a little later, give yourself more insulin, test again and probably give yourself more insulin.  Better yet, eat smaller meals.  I really believe that, for me, that has been my secret to diabetes control -- not pigging out.  Pigging out is always gonna lead to highs.

Also, if you're so scared about lows (and trust me, I get that, I've had some really frightening experiences with lows), always, always carry a juice box.  I know that's rough for men, though,  because they don't carry purses.  In that case, carry glucose tabs or, BETTER YET, these things, which a diabetic dude I used to know would carry with him, because they taste like pudding and are super-convenient and don't have any fat in them so they won't take forever to absorb into your bloodstream.  But I gotta tell you, nothing cures a low like a spot of juice.  Chug, chug, chug!  Course, to each his or her own -- the point is, don't leave your home without something to bring that sugar up and you'll have more peace of mind.

26

Melissa Has good points. I thought I would tell you what worked for me. First I am not the like most having been dx'ed at 52. The first thing I learned was to get my base as I am not a pumper. I do my Lantus in the morning 30 units. To find this base I did my morning insulin and fasted for 12 hrs. When my bs didn't change more than 20 points up or down, that is my base. Now for eating and this took awhile. I had to figure my fast acting (Novolog) to carb ratio. Now for me I love sandwiches, so I ate a bologna sandwich with 2 slices of white bread, injected at a ratio 1 unit for every 115 grams carbs. Well I went up and had to correct. After doing this and adjusting my insulin, I found my ratio is 2 units for 15 carbs. and 2 units brings me down about 50-60 points.  That's what worked for me. My last a1c was 5.7. It took a while to get there about 1 1/2 years after dx. When I was first dx'ed my a1c was 13.2 and bs of 672, in ICU and DKA. So much fun I can't tell you.LOL If there is anything I can do to help with this just ask!!

27

Personally i would recommend a Continual Glucose monitor (you can still go on them even if you are not interested in being on a pump). I had to go off of my CGM for a while because it has been on backorder for months (Navigator system- beware) so i am now in the process of switching to medtronic. But lately i havnt been able to feel my lows at all and it is freaking me out- i cant wait to get back on my CGM so i can stop making myself high to avoid the lows- when i was on the CGM my control was really good and i was never scared of lows because it would tell me not only when i was going low, but that i was dropping so i could treat and prevent the low. Most insurance companies are covering them now if you are interested, and if you get denied appeal letters can normally get you coverage.

 

Good Luck!

28

im glad to hear that you are working hard to get your sugars within a lower range. i used to never go low, no matter the amount of insulin i was taking. then once i was supposed to get my pump and the doctors had ordered it, they said that my numbers werent good enough. the doctors made me wait about another month before i could go it. my numbers improved so much and i got my A1C down from 10.3 to 8.4. it was amazing how much it came down once i really focused and set better goals for myself. my lowest number i have gone is 29 and it was on an airplane.

i treat my blood sugar depending on how severe the low is

if it is 60-80 then i take 3 glucose tabs or a juice box.

if it is -60 then i take either 6 glucose tabs or 3 tabs and 3 crackers(that way i get some protein/fat). then i dont drop right away.

just so you know, you are not alone in the fear of going low. i used to be terrified of going low everyday. then i realized i was more afraid of going too high, so the fear of lows just seemed to disappear. by me not focusing on the lows, i was able to prevent them most of the time, while still keeping my sugars in range.

hope everything is going well with you and just keep up the good work!

 

29

Kevin - the best advice i can give you is to take it one day at a time.  Set realistic goals.  If you are only checking your blood sugar once or twice a day, give yourself a goal of upping that to three or four times a day.  Then tackle the next goal, like figuring out your sensitivity factor or carb ratio (side note, you can "correct" your blood sugar to a more attainable number like 150...something that doesnt feel low.  that might help)

dont get discouraged.  you can do this.

 

30

When I got out of the hospital after having diabetic ketoacidosis (DKA), where my blood sugars were ~ 800, I felt the symptoms of low blood sugar at 200. Not knowing the physical symptoms of low blood sugar, I thought I was having heart palpitations, I was agitated and scared. It didn't help I didn't have anyone at home to support me.

For about the next year or so, I was terrified of lows, keeping myself ~ 140 when going to sleep, waking up at about 160. No bueno.

I will tell you this - my doctors tell me that lows are more "damaging" than highs, but that highs come with higher chance of complications, like infections and the like. However, keeping your blood sugar average below 140 leads to an A1C of 7.0 on average, and will lead you to a lifetime (hopefully) of health and well-being.

Nowadays, I go to bed about 90 and wake up about 70, which means I probably need to make a slight adjustment to my pump. But I feel great. I used to be terrified of lows, but honestly, as long as you make sure insulin is out of your system (if you're on shots) and you go to bed and don't have any mitigating factors (like alcohol or drugs), and your basal is correct... you will ABSOLUTELY wake up safe and sound, and your blood sugar will be about what you went to bed with.

I drink alcohol, and there have been a few nights where my blood sugar has gone low, and it has woken me up. I know immediately there's something wrong because I'm sweaty and have a high pulse. I keep raisins and dried fruit in my room, and a glucosimeter. So, I get up, check my sugar (last times I've done that I've been in the mid-50s), and eat a small box of raisins or fruit, and go back to sleep. I live alone, and it doesn't scare me anymore.

Remember also, your body actively fights low blood sugar. My nurse once told me about that your liver will "sugar dump" into your blood stream when you go really really low... so there's that as well.

Overall - I'll tell you this - 99.9% of my lows happen when I'm awake - and usually when I'm doing something like yardwork or the gym. I have had only a handful of lows when sleeping, and its usually because I overdosed on insulin to counteract alcohol or a beer.

Finally - one recommendation. On a Friday or Saturday night when you can be up late, eat a normal (moderate protein, carb, etc.) dinner. Wait 3 hours (or however long until your bolus is gone). Then, start measuring your blood sugar every hour through the night. If you want to, set an alarm, get up and check, then go back to sleep. Do this a few weekends in a row to establish your "real" basal rate. I think this knowledge, coupled with a very accurate basal rate, will also help you to allay your fears.

I woke up every three hours (with an alarm clock) during the night the first few weeks I was diagnosed for the same reason you are fearful. So I totally get your fears.

I wish you luck and good health through this time!

/ Michelle

 

31

Hey Kevin,

Glad to hear that you are wanting to make some changes. You will feel better and live a longer life because of it. I was diagnosed almost 27 years ago and have lived through many what I like to call diabetic frames of mind.  I've been lucky in the fact that so far I haven't had any long term damage from what I did to my body during my late teens and early twenties.  I spent many years eating and drinking whatever I wanted without considering the amount of insulin that I was putting into my body nor checking to make sure that my blood sugar was within a normal range. However, I know that many others haven't been quite so lucky.  

There have been so many advances in medical devices within the past few years that you have many options to consider.   You may want to consider the pump but make sure to do the research and decide if that is what is right for you. Many people have hang ups about having an extra appendage attached to them all the time. I personally love it and have been pumping for about 12 years but it took my family and friends to convince me to do it.  I had many concerns about having something attached to me all the time especially while wearing a bathing suit, etc.....    

I recently tried wearing the continuous blood sugar monitor and absolutely loved knowing my blood sugar readings all the time. Having another appendage was a little bothersome but it was only for a week and I've signed up to try it again. It sounds like you might be a good candidate for this and it's something to consider. However, I'd suggest doing it for more than a week as I know for me by the time I stopped being paranoid about watching the machine all the time I had to turn it back in.  My doctor's office allows the patients to check it out for a week at a time.   I know there are plans to have a similar device that would talk to your insulin pump which would be a great option.

Now that you are thinking about it I hope you are able to actually do something to make your life better. Good luck!

32

Take is slow, the best suggestion so far is setting short small goals as Sarah suggested. Otherwise it is too damn overwhelming. The fear will subside when you feel you have control again. Carry something that is easy to down. I use small bags of skittles that you see on the shelf now for Easter candy. Dextros in a tube will work also. The idea is to have it all there with you so when you go low you can catch it before any issue and gain control rather than it controlling you.

Good luck and keep the faith that you can manage this T1D. It has been 40 years for me and I have no issues related to D, other than the D itself.

Did you ever read Think Like a Pancreas? ...that may helpy your feel some power over T1D.

33

[quote user="sjwprod"]

 ...that may helpy your feel some power over T1D.

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i know you didn't do it on purpose, but that sentence cracked me up!

34

Keith, I think you have the right attitude.  And I agree with what Sarah said: take it one day at a time. Don't aim for in-range numbers right away, maybe just 5% less for a week, then another 5%.  So start by aiming for a range of 285 - 425.  Do this by maybe increasing your basal by 5%? And don't ever skip boluses.  If you feel low, eat - but don't eat more than 10g of carb if your sugar is over 100.  Eventually, you will be able to tolerate the low feeling more and will be able to wait until it is a 'true' low.

My mom has been T1 for 40 years.  Her A1c has NEVER been below 9.5 (she considers that a good one).  Like you, she is also paranoid of lows because of a seizure she had 35 years ago.  But she has no complications (except high cholesterol which she takes meds for now).  I only say this because I don't want you to think that being high is an automatic sentence to complications.  Yes, highs are dangerous, but don't freak out because of it.  You have lots of time to make changes, so start slow and ease yourself into a comfort zone.  As long as your are still in the high range, try to take care of yourself in other ways: exercise, healthy fresh food, vitamins, etc.

35

Wow when i was reading this i thought of myself..My worst fear is my sugar being low..When it gets to 100 i want to eat a snack and then it gets high but not 300 maybe 200 but i have panic attacks too when mine gets low and when i worry alot i have them too and i try so much everyday to not worry about my sugar dropping and its sooo hard..I check my sugar alot each day making sure it aint dropping and everything but i am now trying to do better and get everything back to how it was when i first got it sugars was great and no worrying..I hope everything gets better for you =)

36

Kevin, you are on the right path because you know that you need to work to improve your control. Good for you. One suggestion I can give as a parent is for the times when you are feeling low, but you are actually in range, is to treat with just a small amount of fast acting carbs - like 3-4 Skittles or Jelly Beans (1 carb each). This can take help take the edge off, but won't make your BG sky rocket. I think another good thing is to test again in another 15-30 minutes after you have a low feeling with an in-range test, because you might feel low because you're dropping.

37

How's this for motivation?  I'm 24.  I've had diabetes for 9 years.  I have been in denial for all of these years and just in the last few days have changes my diet.  But it's almost too late.  All of my organs are shot; my eyes are shot; the nerve pain in my legs in UNBEARABLE.  This probably won't make any difference to you when you read it but I'm going to pray that you listen.  Good luck (really).

38

Keep up the progress in getting your sugars lower.  As a 42 year diabetic I went through a time where I was bouncing between 40 and 400 on a daily basis and I can tell you the fear of low sugars never goes away.  The one thing I can tell you about when working on better control with lower sugars is that with me I had nerve pain in my upper legs the closer I get to having my sugars in control rather than out of control.  Today I will get that pain when I am running to high from what is "normal".  What is normal?

 

I think the best thing I did in gaining control to ease the chaotic changes was to be perfect for  two weeks and build my baseline.  I tested my sugars eight times a day and at breakfast, between breakfast and lunch, lunch, between lunch and dinner, dinner, and then between dinner and bedtime.  I kept my calorie content as close to normal as possible.  After I had built the baseline I started experimenting with one item at a time to see how my blood sugars changed.  In doing this I learned how to adjust my insulin.  Always remember it is a guessing game on the exact amount of insulin to use since we absorbs foods differently.  If memory serves me right I started making small increment changes so not to drop to low.  In time I have this pretty much down but still have times where I made the wrong guess.  Keep practicing and experimenting as you choose new foods to eat.

39

Keep focusing on making changes to correct the bad issues.  Things will change as time goes by.  In 95 my A1c was 11.25 and as I made changes through time I have kept my self in better control.  My last A1c was 7.5 but you have to work at keeping it down.  I guess the best advice to give is for you to find a doctor you trust and who will listen.  If you do not agree with your doctor get a new one.  I have a rule I  follow with everyone but especially doctors.  On the fist visit I will allow you to be in a bad mood because we all make mistakes and can never be good everyday.  On the second if I find the exact thing happening again you are being watched and I am beginning to guestion you as my doctor, friend, coworker, etc...... On the third it is the last time it will happen with me. 

 

I have found that in order to survive the impacts of this disease one must have a good health care team and your doctor and his or her nurse must know you by name and what your concerns are.  A good doctor will asways say they do not know everything and they will listen to you to help them learn.  That is my opinion anyway and it has worked for me.  Keep fighting to stay in control and ask any questions if needed.