Just feel lost

(Cassie) #1

I got diagnosed when I was 28. I’m now 36 and just feel like I can’t get it under control. It hurt me so bad when I got the news. Since then I’ve been in the hospital for DKA going on 5 years now. And it haunts me all the time. I try for the most part to take care of myself. But I love wine! There I said it. So just don’t judge me. I have to deal with that everyday. “You can’t eat that” “That’s bread you can’t have that”. Just need some guidance. My family tries to understand but they never will.

(joe) #2

@Cass81 hi Cassie ,

when I was diagnosed it was common to have forbidden foods… I think it was ice cream and syrup and regular soda. they also described “free foods” and if I remember it was lettuce and peanut butter and black coffee. it was cartoonish in the way it was presented, with a little boy pointing sadly at his stomach and shaking his head “no” at the birthday cake. anyway that was 16 million years ago.

we took the same amount of insulin at the same time and ate to control blood sugar, actually it was to control urine sugar because that’s all we could test. a good blood glucose machine was 10 years away.

I fired my first CDE and doctor. They thought I had to bend my life into diabetes. I forgave myself for being sick but I can’t forgive a wannabe telling me not to eat bread, fat, alcohol, coffee (the rules changed over the years) pizza, etc, Can you imagine someone who didn’t have diabetes telling me I was doing it all wrong?

anyway, I “hired” a new CDE and doctor. I told them “this is what I do” and we figured out medicine, exercise, and testing plans to be able to bend diabetes into my life. a very big difference if you ask me.

Because of a crazy schedule, and a weird basal insulin requirements, I HAD to abandon shots. I got a pump (which was very scary) and it changed everything. I used to say I will not be a slave to a machine, but it was that basal shot of long acting that had me enslaved after all.

I taught myself to drink, I like wine, beer, whiskey, etc. eat ice cream and pizza, (don’t get me wrong, these are all in moderation) and it’s all in how you use your head and how you use insulin. I went from no a1c (because it was years and years I went without testing), to an average of about 6.2%

you can have any level of control you want. You can eat or drink anything you want, you will have to modify how, when, and how much insulin you use and maybe how you inject it… but if I can do it so can you.

(Dennis J. Dacey, PWD) #3

Hi Cassie @Cass81,
I think that I can relate to what you are feeling - over the 60 years that I’ve lived with diabetes there have been many times that I haven’t been able to “control” this horrid condition. What has helped me feel real comfortable now [yes there still is frustration] is when I came to the conclusion, with encouragement from my wife and doctors, that T1D can NEVER be controlled - that is the nature of “the beast” and the human body.
Instead to trying to control MY diabetes, I adopted the theme of managing my diabetes to fit MY particular lifestyle. And that is how I’ve lived my life and done what I wanted. As @joe said “back-in-the-day” we were told to take a certain number of units of insulin once a day and then eat a prescribed food at set times and engage in some activity at a certain time - RIGID. That was the only acceptable treatment plan.
I got fed up with living a life like that so I began “experimenting” with insulin and began splitting my dose and varying meal times - I felt better and my occasional blood sugar test appeared to confirm what I was doing. In the 1970’s I began seeing a new doctor at joslin clinic who for years had worked in Diabetes Research and with his encouragement I began what is now called MDI regimen. Based on what I had been doing, that doctor got together with other doctors and designed what came to be called the DCCT Study which brought about the first revolution in diabetes management since Dr. Elliot Joslin began treating diabetes in 1893.
A suggestion Cassie [I’m NOT a medical doctor] is that you decide how YOU want to live your life and design a plan - with knowledgable advisers - to manage your diabetes - it can be done.

As a final note, last evening just a moment after the hostess seated us, the waitress appeared at our table with white wine for my wife and my red wine - yes, your [reasonable amount of] red wine can be incorporated quite easily in your life.

(Cassie) #4

Thank you:) It just breaks me sometimes. I know that this is my life and it’s not gonna change. I just wish I had better control over it. And I know every diabetic is different. It just hurts when my doctor tells me I need to be at this level and I try but I never seem to reach that goal. The best a1c I had was back in 2012. It was 6.5. I even tried the pump this past year and it actually made my a1c worse. I know there are many things I can do differently but it’s expensive to be diabetic. Your words are encouraging. I have a doc appt in the morning and I’m nervous cause she is gonna see my numbers all over the place .

(Dennis J. Dacey, PWD) #5

Cassie, in a way it is probably good that you are seeing your doctor when it appears to you that your numbers are way out of range. Have notes with you so you can explain how hard you are trying, what you have been doing, any “adjustments” you have made and if she is “worth her salt”, she [the doctor] should be able to provide good advice.

One thing that you could ask your doctor is what HbA1c target is best for you - we all know what is written in the books, but you are a real live person and not just a book - or patient number. I got carried away when I wrote to you this morning but what I was trying to say is that we, each of us, needs to find what may work for us - the diabetes management books for the most part are records of what was “good” at some time.

Good luck to you - and luck certainly has been on my side.

(joe) #6

@Cass81 I second what @Dennis just said and also want to add that this is a marathon, not a sprint. YOU are the doctor in this - not the person you visit every 6 months or even call every day! this, (insulin and blood sugar) is something you have to tweak every hour so you HAVE to be the primary care physician if this is going to work.

a pump will make your a1c go up because they (doctors and pump trainers) are sooooo conservative. I went toe-to-toe with my pump trainer that thought it was the proper protocol to put me on saline before we filled the pump with insulin. I said… NO. we are going to do this, not “pretend” if I have to make a ANOTHER hole in my body it’s for keeps… not playtime. He refused and I fired him and put inuslin in the pump myself. My 2nd pump trainer actually had type 1, She understood. She was awesome. she was still conservative.when my first “calculation” had my breakfast insulin at 4 units instead of 7, I knew the “calculation” was wrong. but it made me have to re-calculate with proper correction and sensitivity numbers which were way too low and high at first (respectively). oh and this is important… my correction and sensitivity DEPEND on the time of day, which is something you can program into a good pump. once it’s set up - you generally find your total insulin going down, your hypos less frequent, and your a1c either return to normal for you or going down…mostly

truth be told it was the basal rate that almost made me throw the pump away. it took an 8 month commitment to make the pump actually work before I could see the value in it. there is plenty of value if you make the commitment, if you ask me.

just like life… the value is in the journey.… not the destination. if you are a geek like me… the only one who got it right was Yoda. Don’t try. Do. or Do not… there is no try. it is not the doctor that makes this work. I hate my doctor (figuratively) but we work it out. she has the same target for me as non-diabetics, which is extreme… under 6.0 HbA1c and never over 140 not even after meals which, depending on your definition, I “fail” at 6.1 to 6.8 EVERY TIME. you have to understand that this is a target not a goal. and by the way, it’s a number not a judgement. oh and I don’t get to go home, or even a medal, if I ever get to the goal! the ADA says under 8.0 is target, because statistically, you can be under 8.0 without hypos. I find that I can be under 6.5 without hypos, but it take a heck of a lot of work. at 6.1 to 6.2 I am testing over 8x per day and using a CGM and still get hypos because I have to be very aggressive with insulin and then if I move a muscle without planning for it I am low. Technically, 6.0 is not worth the risk:benefit ratio but more importantly, it’s not worth the effort versus benefit ratio (or sustainability) for me.

if you have read this far down… I am getting to the point:

the process engineer in me knows that you can’t control anything without measuring it. so… when are you testing?

the 80/20 rule (essentially picks the best benefit for the least or minimum effort) typically points to your overnight sugar. what’s going on with overnight sugar for you?

we all get burnout. we all understand what it means and we all actually have symptoms. you have to pick a therapy that you can sustain, and then do the best job you are capable of. if you are doing those things, then you will not feel lost. feeling lost can mean your heart and mind do not agree on the above… is it even close for you?

cheers and good luck.