The "Uncontrolled" Label

Hi,

This is my first post on these forums and I'm hoping to get some support to help motivate me to do better. I've been diabetic for 22 years (since age 7) and overall I've had a pretty good life without letting diabetes restrict me too much. At the same time I haven't ignored it either. I had the worst control during college, when each day was different from the next, but I kept very good written records. At that time I was on Lantus twice daily and humalog for mealtime boluses. The hardest part I realized later was that no one taught me about carbohydrate counting to go with Humalog. I'd take a bolus according to what my bloodsugar was, not what I was eating. I was also (and I still am) guilty of overeating when I'm hypoglycemic and taking liberties (a chocolate or some pizza) when I'm under good control for a day or two. Now I'm on a pump (Humalog only) and I've almost got the hang of carb counting, but things just don't want to work most of the time. My A1c could be worse; it's around 7.6, but my readings leave a lot to be desired. Even on days that I exercise, eat at the proper times and the proper foods with the recommended bolus, I usually go low and then have an overcompensating high for at least 12 hours. Nothing seems to be consistent, even when I try to be.

I've become overwhelmed by trying to record everything, especially with relying the pump "recording" each BG, basal rate and bolus--why should I need it all on paper? I won't go into too much detail about my difficulties with uploading Medtronic data with Windows 7--basically going to see my endocrinologist takes a good 5 hours to prepare maybe 2 weeks of data. I'm supposed to do basal checks, but either my BG is too high when I start and I have to bolus, which makes the check pointless, or life gets in the way and I have no time to sit around and not eat for 8 hours.

For the past few weeks I've been feeling good about how things are going and then I receive my labwork form from the endo and it has the word "Uncontrolled" circled. It's just set me back to a depressed/unmotivated state I haven't been in for awhile. What's the point in working harder at it, when I'm already working hard but I'll probably have this label for years to come? I'm not really looking for answers from other members, but perhaps there are other people going through the same thing or who have gotten through it. I don't have any diabetic friends and I think it's time I found some.

MJ,

I think taking the labels too seriously can get you in trouble.  My Dx has been listed as "Uncontrolled Diabetes" for as long as I can remember.  Over the last decade (maybe longer) - my A1C's have been between 4.3 and 5.3 and I've had fewer than 1 hypo per year that required any intervention from the outside.  I'm happy with my control and feel good about how I manage my diabetes.

A lot of the things you have mentioned in terms of your management sound like you're doing really good stuff and if it was me, I'd be an easy sell on  staying proud of the work and records management you are doing.  

My approach has been to find the things that improve my control, confidence, management and mood and to work to hone those skills.  My doctors can write what they like.  

As for diabetic friends - I'd be honored if I can (if not now, eventually) be counted among yours :)

Cheers!

A-D

Hey A-D,

Thank you so much for the words of encouragement! Even though I suppose I am blowing it out of proportion, I think doctors should know that it is not helpful to make these labels. The last time I saw my endo I had to explain to her that lows feel bad and that's why I like to hover around 7-10 mmol/L (126-180 mg/dL) instead of 4-6 (72-108). Even someone who works with multiple diabetics daily still doesn't know what it feels like and it's shocking that they are the experts. I definitely feel a misunderstanding from everyone around me, even though I work in a medical field. It's great to have people to relate to on here!

Ideally, my CGM would work the way it should and I would have a clear understanding of what my body does 24-7, but I don't live in a laboratory and follow the same schedule every day. I'm waiting for a iPhone/Android app that will sync with my pump and make it 100% easier to keep records. I was a record-book star at the Endo clinic I first went to. Every event, feeling, snack, etc went in there with multiple coloured ink! When I moved to the US they told me it was too much information and I had to follow a chart that they could read easily and then they started calling me "uncontrolled". It's a transition that I don't really have time to acclimate to.

Maybe I just need to go on a search for a better doctor/team... Or maybe I'll go back to the 10-coloured pens!

Take care A-D!

MJ,

Given your description, I would keep interviewing docs and looking for a better fit.  Your wish for an Android friendly device is in the works with the Jewel pump - if you haven't checked it out, it should give you a little something in the future column to lift your spirits.

I have two boys (aged 2 and 4), am winding my way back into consulting work, being an average home owner with marriage and life responsibilities that match those tasks and still managing T1D (and more recently MS)...  and my schedule does seem to vary a bit from day to day - so I hear ya' loud and clear on the "non-lab-rat" model.

The ten coloured pens sounds positively FANTASTICAL - I envy your ability to chart and track so much - i stumble my way through - but WOW  - even the though of that is just awesome!

Anyhow, sometimes labels help us put a box around things and give us tools - sometimes - you just have to let the docs call 'em whatever they like.   I shudder to think about what's shown up in my chart over the years as descriptors, LOL

Be well and best of luck!

Cheers!

A-D

I am sorry that you have been getting discouraged! It is not an easy day to day dealing living with diabetes, especially when you seem to be working so hard and doing all you can to have great BG numbers then your doctor gives you the label of uncontrolled. It is bound to make you upset and feel that all the work have put into control is worthless.

I sympathize with you because I am in the same boat! I try so hard, doing what I can, eating right, checking sugars, shots as needed, trying to not overcompensate when I to go low and all the frustrating almost unrewarded work. I know what it is like to feel so proud of your work when you go to see your doc then they seem to be down on you, it is like you want to scream at the top of your lungs and beg for a pat on the back not a butt chewing!

You just have to remember that even though the medical teams seem to be hard on you, you feel as though the good work you do to control your sugars, and it is like you are deprived with food and activity that it is worth it. You have the right to be upset and down, but let yourself stay that way for too long. Feel those feeling when you need to but also remember that you are doing good. Try to look up and feel better about yourself. Sometimes you have highs and lows in your sugars that there are no explanation for and you just have to adjust accordingly and move on.

It is a day to day situation that you just can't walk away from no matter how much you want to. As long as you are putting your effort into control and you are allowing yourself te remember that you noone can have perfect control then you are doing GREAT!!!!!

When it comes to wanting friends that are going through the same thing I would love to be there for you! But don't forget that I bet you dollars to dognuts that your family and friends without Diabetes want to support you too! Let them in on the inside of the trials and tribulations and they will step up to being rocks and support for your downs and celebrate the ups with you!

Good luck and keep your head up!

Joleen

Joleen,

Thank you so much for your response! I'm so happy to meet people who are so supportive, knowledgeable, honest and caring. Diabetes is such an engrained part of my life it actually feels strange to talk about it in so much detail only every 4 months or so with my endo. As for trying to share my problems with friends and family, I feel like I'm the healthiest of most of the people I know. I eat 3 good meals daily and snack lightly, I don't drink alcohol and I get a good 7 to 8 hours sleep. My family has always been there for me, but they're also the first to ask if I will have a scoop of ice cream ("Oh, we'll all go for a run around the block with you after!"). At work everyone looks at what I'm eating and then asks if I'm sure that doesn't have sugar in it. I just want to talk to people who are already on my wavelength and I don't have to explain my actions.

It makes me feel tons better to have gotten quick replies from A-D and you with such inspiring words. Thanks again. Hope your diabetes is treating you well and good luck to you too!

Have peace with the control you have.  You are not a diabetic robot who lives to check blood sugars and count carbs.  You are doing the best you can.

There is so much misinformation about diabetes even in the medical community.  We do not have working pancreases, so we try to do the best we can with the all the variables that affect blood sugar.

When I was pregnant my OB-GYN was out and I saw someone else from his office.  The new doctor said I was a brittle diabetic, which offended me greatly because I had a 5.1 A1c with no lows.  I asked her what she meant by "brittle" and she said that my numbers weren't perfect.  I ended the appointment right there... I'm not going to waste my time  getting medical advice from someone who doesn't know what they're talking about.

If your doctor is helpful and encourages you to do your best, then keep him/her.  Otherwise find someone else.

Jennagrant,

I heard the term "brittle" diabetic once from a veterinarian asking me about what it was. I had to tell her I had never heard of it and I thought it must be a term used by the non-specialists.

That totally reminds me of the appointment I almost ended back in my endo clinic days when a resident (student doctor) told me I should eat only tv dinners so I could keep track of carbs. I must be overly patient because I just stared at her and waited until she was done and then asked when my real doctor would be coming in!

Finding a good doctor is so difficult I'm not even sure how to go about doing it!

I do appreciate your input. No robot here! I just want my A1c under 7.0!

Endocrinologists tend to be the best D doctors.  Call a medical office and ask the staff who they recommend. Then set an appointment and make sure you like the doctor and they are knowledgable.  

It sounds like the lows are your main bs problem.  When you have a low your statistically way more likely to have an extreme high and more lows within the next 24 hours and then it becomes an ongoing cycle.  When you're low it's hard not to overtreat.  Use something easily measured, like glucose tablets or a kids size juice box or pre-packaged Rice Krispy treats.  Eat exactly what you need to correct, then test in 30 minutes and see if you need anything else.    

Don't let a slightly high blood sugar keep you from testing your basal rates.  If you're below 220, correct it and check in 2 hours.  If you're okay then, start your fast and test bs every hour to make sure your basal is accurate.  Your pump isn't going to do you much good until basal is accurate.  

I also find it easiest to calculate insulin and carbs by using 100 as my target blood sugar.  If you have a range, like 80-120 it's too much of a moving target.  Since you're having lows you may want to give yourself more cushion and aim for 120 or 150 or whatever you think is right.  

The cool thing about diabetes is that when you make changes you see instant results.  I don't see any reason why you can't drop below a 7.0 with a few little tweaks.  Keep us updated.   -Jenna

What drives me MAD about doctors who treat diabetes is that they themselves HAVE NO IDEA what its like to be diabetic and HOW difficult it is to make it perfect!  Its just not that black and white...sorry!  The most frustrated I get is that life as we know it today (or at least mine, being a single mother and having to be at work at a specific time), there is always the diabetes that messes my schedule up.  If I get up at 4:45 a.m. to go to the gym in the morning (with my son who is my push) and my blood sugar is low, there is no way I have enough time to get my blood sugar up and work out before going to work......it sets my mood for the day and not in a good way....GRRRRRR

Hang in there, i have had it for twenty six years with the same troubles as you.  To be honest, if i saw that on my lab results, i think i would have blown a gasket.  They should never wright down something like that.  Everyone has ups and downs.  I check my blood sugar 8-10 times every day and i still get reports in the 7-7.9 range.  Three months ago i got the test and i was amazed that it was 7.7.  I told the doctor that id did not beleive it.  With diabetes, it seems as though it is a constant downer when the sugar is high.  It is so frustrating when you try your hardest only to be told by someone that you are not trying hard enough.  let them try type 1 for a couple of days and see how they do.

anyone can do diabetes for a couple of days.  it's when it's forever that it affects our coping abilities and the level of burnout.  an endo that wears a pump with saline for a week has no idea what 33 years into "forever" feels like, nor should they.

I find it useful and very gratifying to fire endos (cardiologists, specialists, and sometimes even admins)who misbehave.  I don't get angry, that's handing over control, I get up, and tell them their fired, and leave. 

I can't do records keeping like that, it would be too much for me and then overall control would suffer.  from your previous posts, I am guessing your strategies on bolusing for carbs needs work.  if you are a self learner, then get "Pumping Insulin" by John Walsh.  It'll teach you to make your own adjustments for carb ratios and give you some hints (going low right after a meal may be because of mixed carb meals or delayed stomach emptying for examples) for ratios and for mixed mode bolus (dual wave, or whatever your pump calls it).

good luck.