The Future is a Scary Thought. Perhaps You Could Help?

Type 1 and LADA
1

Hi there. I’m nearly 18 and have been a Type One Diabetic for nearly 6 years. When I first was diagnosed, I was on shots. Then I went to Lantus for a year or so, taking three shots a day. My HBA1C has always been in the 5.0 - 6.5 range(it’s jumped to 7.0-7.5 in this last year. >.<). I’ve been on the pump for nearly three years now. But within the last year and a half, my sugars have taken a turn for the worse. And it scares me. Within the last… eight months or so, I’ve been running between 150-400ish. Bad, yes, but I eat all the right things and am on top of everything most of the time. Even with bolusing, changing my basal rates(and I must admit, I have a hard time remembering to test. Usually I only test about 1-4 times a day even when I am supposed to be testing around 8 times), and all else, I can’t seem to get them in range. I have nerve pains in my legs -terrible ones at that-, and after about a two to three day time period of having sugars in the 300’s(even with bolusing, changing the site, etc.,etc,), I have a hard time seeing. I can’t make things out clearly and I am afraid I will end up on Dialysis, go Blind, get Nephropathy, or all of the above, before I’m 30… I don’t know, I talk with my mother about my fear of the near future, but as you know, it’s hard to explain to a ‘Non-Diabetic’, about such matters. I just don’t know.

Here’s to hoping this little whiny, complainy blurb is something worth reading. Don’t reply if you don’t want too, I just needed to get this off of my chest, I suppose.

Respectfully,
Jessie.

2

Jessie,

Have you have developed scar tissue at your pump sites? This can make it so that you aren’t absorbing the insulin properly. Have you tried going back to shots to see if you respond better to them?

Is it possible that you have developed antibodies to the insulin you are using? Have you talked to your doctor about switching to a different insulin to see if that helps?

High blood sugars make us much more insulin resistant which makes for a vicious circle. So you are getting much higher blood sugars partly because you have much higher blood sugars.

What happens when you cut way back on carbs? Do you see lower numbers? If you haven’t read Dr. Bernstein’s book, you probably should because even if you don’t eat a diet as low as what he describes, you may get some concepts that help a lot.

Finally, I get a lot of email from people because of my web site, and have heard from a couple who had similar problems and seemed to stop responding to insulin. The solution for them was to go to see top endocrinologists at University medical centers, not the hack endocrinologists who practice locally who were of no help to them. The GOOD NEWS is that the really good endocrinologists solved their problems and got them back into great control.

So there is a solution for you, you just haven’t found it. Meanwhile, don’t give into despair.

3

I know how you are feeling and what you are going through…I think Jenny made a good point about the insulin…Get on the phone to your doctor, hopefully you are seeing an endocrinologist…If not you should be…There job is to help us getting tighter control. I would check with the pump company, your pump could be not working right…they do wear out over time…You might try different areas to put your infusion sets…I know if I put mine too far in the back of my hip my sugars stay high…I do have nerve damage to my lower legs and feet…also about year or so ago the eye doctor found a couple of spots on the back of my left eye…That worries me, and I still haven’t found an eye specialist in my area…And we are here for you…and it’s good to get something like this off your chest…stressing about the “what if’s” will make your sugars go high…Don’t beat yourself up…I think most of us have been where you are at…If you need to vent more or ask questions…we are your place to go…Good luck with all this…and Try to have a MERRY CHRISTMAS…

4

Hello, Jessie. I’m sorry you’re struggling right now. Jenny has given you some good suggestions, and you’ve come to the right place for support and encouragement. I have many problems with scar tissue and it helps me a little to make sure I don’t put my infusion set within a square inch of another site within a 30 day period. Keep a notebook with all your info, if not to share with your doctor or diabetes educator, then for yourself so you can identify any trends. Start making some small goals, like testing more often, and take baby steps to achieve your goals. Then create some rewards for yourself when you do good. These rewards can be small things like a new lipstick or a trip to an art museum. I know you can do it if you decide you’re going to turn this thing around.Keep in touch, we are here to help you.

5

Hi Jessie,
I just wanted to add another voice to tell you we are with you. Not being alone makes a big difference when it comes to having the courage to go on and do something else. You have gotten really good advice already and i would just say I believe the sites and changing insulin is going to be the things that do the trick for you. I have to be careful to change sites regularly too and write down where I have been so I don’t forget.and go back too soon to the same places. Be sure you date the entries in your book. I would also write down certain things you do before you notice the higher readings. For example, mine often get higher in the afternoon and i find i have been having more pain or am more tired or some other stressor. See if you can work in a little personal time if those are factors for you. Maybe 10 minutes to sit back with a cool or warm drink and just close your eyes and think peaceful things or happy thngs but no “worry” things. And tell yourself that you CAN get this worked out. We are with you now and we will help. That is what we do. We ALL help each other here. You are part of us now, part of our family. Welcome home Jessie.

6

I’m sorry, Jessie. We’re here for you. I think everyone is giving you great suggestions. I hope you can find your equilibrium again. I know that when I was diagnosed, they blamed erratic control on pre-puberty, then puberty, then teen hormones, then college stress, then…? Pumping allowed me to slacken on my testing and routine - so though I still pump, I have often had to renew my commitment to testing regularly. For about a year, I’ve tested 10-12 times per day. Alarms help, setting the post-meal bolus 2-hour alarms on the pump for instance. Then I got my CGM and I still test more than 4 times per day.

What has helped me is increasing the amount of time between my boluses and my meals, reducing my carbs, testing my basal rates, and adding in some exercise (okay, so I don’t do it anymore, but I did for about 7 months and it helped reduce my A1c). But testing more is the key. The key to everything. Do you have someone in your life who could help remind you to test? A note on the fridge? I was bad about blind bolusing - but I made a PROMISE to myself that I would never eat a bite of food without a bolus and that I would never take a drop of bolus without knowing what my blood sugar was. That helped, too.

7

Jessie: It is so good that you have turned to the community. We do not consider anything you have written to be whiny. As you say, it’s hard to explain all this to a non-diabetic. They can never understand. We do. And, we all have experienced some or all of what you are going through.

You need to talk with your doctor, and possibly start working with a CDE, if you are not already. You may need a different approach on basals and boluses. In my experience, patterns that seem to work for me for a while will suddenly cease working and either basals, boluses or carb ratios (or some combination) will all stop working, sometimes sending me back to square one, so you may need someone to help figure out that new approach. I cannot count the number of times I have had to change things around over the years.

If your sugars are that high for extended periods, you need to test for ketones in the urine. You can get test strips at most drug stores and just dip them in your urine. With sugars that high for that long, you may be at risk for DKA, which can contribute to some of the syptoms you may be experiencing and can cause other problems. The good news about many of your symptoms is that getting the sugars back into an acceptable range can ease some of the symptoms.

Record keeping is one of the keys. It is also one of the many tough things to keep up with. I go through periods were I am not that good at it. I think we all do.

There are lots of resources available. Start with your endo and a CDE. And keep using the OC. That’s one of the things that we are here for.

8

Thank you, all of you. It’s very comforting to know that you all cared to reply to my little blurb. And your suggestions were wonderful. No, I don’t go to school anymore, I graduated a year early. Yep, home schooler here. Yes, I do have an Endocrinologist, and a very good one at that. She’s very well at her job and keeping me in line. I have a hard time listening, though. You know, Jenny, I haven’t thought about changing insulin. I take Humalog, an go through about six bottles a month because of these sugars. I’m not overweight nor underweight, so that really isn’t the problem. And I do see lower numbers on the days I cut back on carbs, I’ve gotten into habit of eating only once to three times a day, other than tiny snacks here and there.

Dawn- The eye thing is scary, especially being as young as I am. I’m barely getting into college and thinking that I might be going blind is frustrating. I know it doesn’t just, happen, but it does happen slowly. I am planning on going to my Eye Doctor in January when my Fathers Insurance takes affect again.

Marie B- Thanks for the suggestion. I have a hard time remembering to change my site often enough. I always end up using the left or right side of my hip. Bad habit, but it’s more comfortable. Perhaps I’ll be using my stomach more often.

Saundra- Keeping a log book of everything is a good idea. I do it ever so ‘once in a blue moon’, it’s very hard to remember to do so when I’m doing my school, taking care of my horses and dealing with the soon to be Adult life of mine. Haha.

Melissa- I know exactly how you feel. My odd sugars have been blamed on the same things, even my Doctor told me that ‘it’s just the nature of the Disease,’ and that my case is just a little tougher than most. I’ve developed some insulin resistance so I take even more insulin… And yes, I have a bad habit of ‘Blind Bolusing’ (by the way, the term is perfect, opened my eyes a little,), I’ll test as soon as I get up and by time night-time comes, I realise I only tested twice in one day. I do get exersize, not enough as I would hope to get but enough to stay in shape. Probably about 1-5 hours a week maybe? The alarms help but I tend to just ignore them. Very bad me, I need a horse to kick me in the rear end before I actually sit down and take care of what I’m supposed too.

Renee- Perhaps I do need to pick up the exersize a bit more, haha. I tend to go outside a lot, and horseback riding helps. For the more boring days, ‘Wii Fit,’ is a lot of fun.

Jonathan- I do talk with my Doctor and go to my CDE at least once or twice a year. I was in DKA while diagnosed, and always have Keto-stix on hand, although I have a bad memory of actually using them when I should. Yes, most people have bad habits of not keeping up with the Logs, but… I have a bad habit of never keeping up with my Logbook…

Again, thank you all for being so kind and understanding. I know I’m still fairly young (only 17), and have a whole life ahead of me and whatnot as people tell me, it’s scary to see a friend of my mothers (whose only 36), and was born with Type 1, who’s on Dialysis, it looks painful and… More needles!? What the hell?? We should just become the new test dolls for shots. Walk into the hospital and offer our arms up for ‘shot’ rent. I bet the Doctors would have a hay day. Again, thank you all so much. I’m going to show my Mother all of what you said and when I go see my Doctor in January, I’m going to be bringing a pad full of things, and a pen to write more down. She won’t know what’s coming to her! I’ll be in there for hours. My poor Doctor. Haha.

Respectfully,
Jessie. <3

9

Hi Jessie,

Wanted to add my encouragement. Everyone has given you the best recommendations & just wanted to send you a big hug. We are here for you whenever you need to vent or need support.

Love horses. Envious that you get to ride a lot. That’s awesome exercise.

I’ve been on several different types of insulin until my doctor found what worked best for me. Of course, that will probably change again at some point, too:)

Skipping meals isn’t going to lower numbers, so please eat. Know it’s hard to sometimes.

Lots of Type 1s here who are older than your mom’s friend & doing great. Those who do best are those who test a lot, eat well & exercise. And, demand a lot from their endos. You can do it & we will help you!

Please keep us posted.

10

Jessie:

I will respond to the issue with the eyes. You know I have been diabetic for 34 years and I just cry every time I think of going blind, Its a fear that for me has never gone away. I have other complications and none of them compare to this fear. Ok so the fear is normal. Now the question how do we get though it? Well for me I see the eye doc twice a year. Nothing is wrong, I have what is called peripheral retonopathy and it never changes one time it will be there and the next gone.

It is not whiny to worry, its natural. My biggest mistake was not going to the see the eye doc for years and worrying so much about it. So here is a tip I learned along the way. If you go see an ophthalmologist it is usually counted a medical visit, just the same as a medical doctor unless they prescribe glasses etc. If you call the local ophthalmologist and tell them you need a Diabetic Check up they will get you in look at your eyes and will be able to tell you if you have retenopathy and if so how advanced. the cool thing is it is a medical visit on almost all insurance plans.

I wish you the very best. I have spent years upset about potential complications, but I have found it is better to face the fear and talk to folks who understand. I wish you the very best. Let me know if I can help in any way. Wea ll want ot help out.

Rick

11

hi Jessie, when I was about 18 I heard a comedian say

“I would have taken better care of myself if I knew I was going to live this long” =)

so now I have 31 years of type 1 diabetes behind me (and 43 years too) and I learned this lesson:

-you can’t do ANYTHING about yesterday, its past
-no one truly knows what tomorrow will bring
-you only have today, and life is a gift, so that’s why it’s “the present”

as absolutely silly as it sounds it’s the truth. You can have any A1c you want to have. When I read your post I think I hear some self concern (testing 1-4 times a day) and some fear (neuropathy) so it sounds, to me, that you’d like to do something different but you seem kinda stuck where you are at.

There’s a great read titled “Diabetes Burnout” there are some great testimonials and really practical advice in there you can find the book HERE. Best of luck to you and we are all here if you need to talk!

Joe
PS I spent almost 17 years right in that spot so I know it well.

12

Jessie,

I was diagnosed at 11, and I am staring 30 down right now (I’ll be 29 this June). I know how scary it can be - I have been in your shoes. But it does sound like you are doing everything you can to protect yourself. If it makes you feel any better, I did not get a pump until I was 20 and have still gone on to get work, travel, get married, and have two kids. Thirty is coming fast, but even though I have retinopathy and some beginning kidney issues I can definitely still see and do all the things I love to do. With diabetes (and life in general), you just kind of have to learn to live with the curveballs thrown at you.

Best wishes and best of health to you - you can do this! Being scared is ok - the fear helps remind you to do your best to fight this disease and not let it conquer you.

13

Hi Jessie,
I am just checking in to see how you are doing. And just wanted to remind you that you are one of us. You are loved. We are all with you.

14

When I was diagnosed with type I in 1956, I was two years younger than you are now. Back then, the only way I could test my own BG was to dip a test strip in my urine. This really gave inaccurate results. I have most of the side-affects that you are fearing or experiencing.

It’s hard for you to look on the bright side, but hang in there. A cure for diabetes may be just around the corner. In the meantime, be the squeeky wheel with a good endocrinologist. See an eye surgeon at least twice a year. Laser treatments in my left eye were much less painful this fall than they were twenty years ago in my right.

Above all, don’t forget that God loves you and has a plan for your life if you want it. We just finished celebrating the birth of His Son Who came to take the penalty of your sin upon Himself and offer you eternal life instead.

You may think I’m medling, but If I had a cure for Diabetes and kept it to myself, what would you think when you found out? Obviously, I don’t have the cure for it, but I do know how to share with you the gift of eternal life.

15

Hello all, once again!

Here I am keeping you posted.

I went to my Endocrinologist on the 15th. My graphs showed little to no lines in the 412 and higher area. My Doctor(whom a lot of people are afraid of), was extremely pleased. For once instead of saying my Diabetes was in fair control(after years of being her ‘exemplary’ patient), she said it was in very good control! My A1C…

-drum roll-

6.9! My work has paid off so well, I was all smiles when hearing it. I expected a slight drop from 7.3, but not so substantial. This makes me very very happy, because it was hard going from seeing 5.0-6.0%, to 7.0. More than hard, disappointing. 6.9. I can’t stop saying it. And now, I’m looking into a new pump this year so, well, we’ll see how this continues paying off. I am not going to get complications prematurely. I can’t. Again, thank you all, you have helped me in ways you cannot imagine.

Respectfully,
Jessie.

16

Great news Jessie!!! Way to go!!

How are your legs pains? Did your doctor recommend anything for that?

17

Leg pains, still happening after highs. Good thing is though, I’m 325 right now and no pains as of yet. The high isn’t the good news but, you get the picture. I may have them in the morning though, it all depends. Honestly, I didn’t tell her about them even though I should have. I didn’t notice it until after my appointment that my legs and hands are falling asleep more often and easier than they normally would. I’m going to do some research about that tomorrow. And thank you, it was spifftastic news to hear.

18

Don’t get down about it. My brother and sister are also type 1, yes they have had problem but hey they are in the 50’s and still kicking but. My two sons are type 1 aged 9 and 12 and if you look at my postings they are having problems too.
Check your injection sites for lumps, rotate sites, ask about changing insulin as the body some times stop reacting to the one you are using. I have had this before with my sons. Ring the doctor. There are alot of very knid and helpful people on this site who can help you.