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Let's Be Honest


Nov 4, 2013

Katherine Marple: Following the spirit, if not the letter, of rules for diabetes.

There are many rules to keeping diabetes "well managed." When I was diagnosed many years ago, I was told of the food allotments, the glucose checks, the exercise requirements, carbohydrate limitations, etc. There were many restrictions, and yet, the doctors told me I could live a "normal" life. As normal a life as anyone else in the world, so long as I followed the accompanying list. I shake my head and smile as I wonder, "What does that even mean?"

In the past 15 years of having diabetes as a part of my life, like an annoying companion, I have made compromises to these listed rules. Here is my honest list of things I am not "supposed" to do, but find myself doing anyway. I know the basic reasons for each rule, will admit to my many excuses for not following them, and share my "livable" adjustments.

1. I understand we are not supposed to mix containers of glucose strips due to expiration dates because mixing the strips may wind up with my using an old strip at some point. But, it's cumbersome to carry around a container for that last one or two strips for the rest of the day, in addition to the container holding 25 new strips. I attest that I have mixed glucose strips in almost empty vials. My compromise is to be sure to empty a container completely at least once per month.

2. I understand we are not supposed to use the same needle for more than one injection due to risk of infection and loss of puncture effect. When I'm injecting more than 20 times per day, it's frankly annoying to have to switch out the needles on my insulin pens. I attest that I have used the same needle more than a hundred times. During my burnout phases, I would use the same needle until I had to press down hard on it for it to go through my skin, resulting in a multi-colored bruise. My compromise is to switch out the needle at least once per insulin pen.

3. I can't recall the last time I changed my lancet. That's all.

4. I understand we must eat a balanced diet. Our bodies are tired and a healthy diet of all the major food groups will help support our health. But, there are just so many food groups! (I'm only partially joking with that statement.) I admit that I have spent a day here and there living off the caffeine in my coffee, vegetables, and fruits with zero grains. I am on the go almost constantly, so I cut up fruits and vegetables and keep them on the shelf in the refrigerator that is closest to my eye level. My family eats nearly every food group, but I'm still in the phase where I need to assist my children with eating their meals. Once per week, I force myself to sit down and eat a full dinner with all the fixings.

5. Using an alcohol swab to clean the finger prior to glucose testing, as well as for cleaning the injection site, is meant to sterilize and help avoid infection. I just wash my hands. Sometimes I even inject through a thin pair of pants into my thigh, which is my favored site. Hey, at least I'm washing my hands first.

6. We're supposed to keep our feet warm. I know I will regret my actions in the future, but I hate the feeling of socks. I hate that I can't walk across my hardwood floors without slipping or that they make my shoes feel tighter. Can wearing socks make you feel claustrophobic? I use blankets at the end of my bed, as well as my husband's warmer feet to defrost. (The poor guy.)

7. We are supposed to keep the insulin vials refrigerated, or in a stable temperature environment, else it may lose some of its potency. I keep my insulin in my glucometer case, in my purse. I use enough fast-acting insulin to go through the entire pen within days. No matter where I store the insulin, I doubt it will have enough time to lose potency at the rate that I use it up.

8. Rotating injection sites is also on that list. It reduces scar tissue, maintains absorption rates, and potentially avoids most bruising. I really do rotate injection sites, but not nearly as thoroughly as I probably should. I favor injecting into my thighs. I switch legs or move in inches around my thighs to help keep the sites fresh. When my glucose readings stop reflecting the numbers I expect to see after meals and injections, I rotate injection sites to my back, arms and upper buttock. But, I only do the proposed rotation when I see a problem with my readings.

9. We are recommended to get eight hours of sleep per day. This sleep must also include plenty of REM, which means it must be in longer stretches than two to four hour increments. I attest that I have two infant children. Wait, I meant to say that I declare I do not get enough sleep. My youngest is turning one year old in November, so I know I will have ample opportunity to get some decent rest soon enough. In the meantime, I eat healthfully, exercise in some form daily, and take iron supplements to keep my blood fresh and moving. I know these concessions aren't enough in the long haul, but it's the best I can offer myself for now.

10. I understand we are recommended to inject fast-acting insulin 30 minutes to an hour before eating a meal. This gives the insulin time to start working prior to consuming carbohydrates that our body must break down. I admit that I inject during and sometimes after my meal is finished. I can't guarantee how much food I will eat at every meal. Sometimes I am distracted, exhausted, or don't like the food I have served. (I will never admit that last bit again: I am a divine chef) Thanks to Apidra, my postprandials don't suffer much with this accommodation, due to how quickly it reacts.

11. We are asked to keep a glucose log of all of our readings so we can better understand cause and effect of the activities we do each day. It's just so tedious! I don't ever write my readings down, but keep a mental score of how I'm doing. I know this isn't a valid compromise. The best I can do is write a log based on the readings stored in my meter prior to seeing my endocrinologist. I'm probably a horrible patient to work with because I do my own adjustments and am very involved with my diabetes management plans. The only times I've kept a decent log with notes was when I was pregnant, newly diagnosed, or seriously struggling and needing doctor aide to help me solve a problem.

12. This one is an extra-credit admission: For about 10 years of my life with diabetes, my A1c hovered between 7.0% and 9.0%. I didn't have all the tools I needed, was neglecting my health, in denial, and honestly didn't have the insight to fully understand how to manage my disease. My most recent test showed a 7.8%. It's not anywhere close to where I was just one year ago, and needs some serious improvement. But, though it's a direct reflection of how I'm managing my health and all of the stresses being thrown my way this past year, I am thrilled that it's not higher. I know I will gain better control very soon, as my children grow just a bit older and don't depend on me as much. (That felt like a confession to the pope)

Though this list is honest, it's also very light-hearted. I'm admitting that I do not follow all of the rules we are handed at the onslaught of our diseases. I'm hoping to open up the floor. I'd like to get the conversations going about what it is that you do to make the diabetes rules more accommodating to your personal life and preferences.
Diabetes is mainly about control; control over every aspect of your life: food, stress, emotions, exercise. Sometimes, the pressure to be numerically perfect can drive a diabetic insane. We don't have to be completely perfect to be basically successful.

Katherine Marple was diagnosed with type 1 diabetes at age 14 in 1998. She is the mother of two small children, has battled insulin resistance, pre-eclampsia, and CGM and pump failures, leading to insulin therapy via MDI using Levemir and Apidra, and sometimes metformin. She is the author of two diabetes related novels: "Wretched (this is my sorry)" and "Deathly Sweet."


Categories: Managing Diabetes, Rules for Managing Diabetes, Type 1



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Comments

Posted by Anonymous on 7 November 2013

Hi Kathy ,
Regarding point number two , I believe you were talking about lancets not pen needles , as nobody injects 20 times per day !!!

Posted by georgiagayle on 7 November 2013

I thought this is how we all live! (50 years like this.....)

Posted by Anonymous on 7 November 2013

I love your writing. I thought I was doing badly using a pen needle a second time! Being an older woman I do write everything down as I can't remember when I last did anything including the long acting lantus which put me in the er three times. I am so glad to know some of your shortcuts.

Posted by Anonymous on 7 November 2013

Amen, brother, amen! I mean, sister. I've done or been doing all the things you have for 62 years. Still alive. Still healthy. Someone once suggested that perfection is a metaphysical term. Too bad physicians and health care providers don't take metaphysics. They might understand human beings and the human condition more.

Posted by shosty on 7 November 2013

Thank you!

Posted by Anonymous on 7 November 2013

I believe there are many of us who live as you described. You're the first who sat still and wrote about it in a "funny" but honest way.
Have been doing this for almost 54 years and we were excited last month when A1C was down to 7.9......Keep up the good work and enjoy the children.

Posted by Anonymous on 7 November 2013

I say that sucking the blood off of your finger after checking your glucose level is just a form of RECYCLING!!!

Posted by Anonymous on 7 November 2013

Thanks for writing and sharing this! Helps me remember that I'm human just like everyone else. T1D for 35 years.

Posted by Anonymous on 7 November 2013

Thank you Katherine for this funny,uplifting and inspiring. You helped me to laugh & smile at your "confessions" because I too do most of the same things. And I always enjoy reading your posts,you inspire me to continue my fight to not let type 1 diabetes get the best of me. I've had it for 23 years since I was 9 years old and I refuse to give in now. God Bless you and please keep writing this column! =)

Posted by Anonymous on 8 November 2013

Me too! have been diabetic 46 years and this is my life too. Thanks for speaking up. And I too believe most of the 'rules' are to have us use the products so they can make more money on us...I've never had an infection or problem. As well I change my pump apparatus once the insulin runs out--every 5-6 days instead of every 3...

Posted by Anonymous on 8 November 2013

...and in the end it makes not one iota of difference to the outcome

Posted by Anonymous on 8 November 2013

Lovely article! I have come to the conclusion that perfectionism and type 1 cannot co-exist. I just try my hardest, make adjustments, and keep living. I look at my treatment team as MY team that I am the captain of and of course listen to educated advice, but try to not take to heart the perfectionism that is inherent in my team members.

My confessions: I try to change my lancet at each daylight savings change. So, twice a year. Sorry Becton Dickinson. I re-use syringes. Sorry again, Becton Dickinson. I do not wash my hands prior to testing and simply wipe the excess blood from the test onto my other hand. I believe an a1c below 7.0 is great for me. An a1c above 7.0 means that I need to make adjustments and will work on figuring out adjustments that make sense.

I love this balanced, pragmatic piece. Judgment has no place in the type 1 world.

JD - 21 years T1D

(PS - to the person that thought 20 injections daily was impossible, it is definitely standard course using MDI while pregnant! Annoying, but definitely in the range of # of injections daily!)

Posted by mhall135 on 8 November 2013

I have recently started changing the lancet more often. I used to change it when I opened a new bottle of strips but it began to get harder and harder to get enough blood out of my finger/palm so I started changing it more often now. When I injected insulin I would reuse the needles. Not 100 times, but yes, I reused them. I have put the last 2-3 strips into a new bottle, big whoop. I am a healthcare provider as well as a person with diabetes so I see both sides of the coin on some of these issues. Nothing drives me more crazy than a person WITHOUT diabetes making a comment like, "you should always," do this or do that. I was recently in a seminar on pump therapy and I asked if the pump would store a low blood sugar number that was not used for a bolus. The representative from the pump company said, "that is why the person with diabetes should always write down their blood sugar." I wanted to say, "you are why people with diabetes want to come unglued on healthcare workers". Come on people, give me a break, are you going to make a note every time you go pee? Then don't expect me to make a note every time I check my blood sugar because I do it just as often.
I always do the site rotation and protect my feet. I don't want to have to deal with the consequences of not doing either one of those. As far as getting enough sleep and eating healthy...I feel that is where the 'normal life' comes into play. How many people that live a 'normal life' get enough sleep and eat health all the time huh? I'm normal!
Another drive me crazy moment is when an obese person will get onto a person with diabetes for not eating healthy. I want to say something like...speak for yourself. It's funny that if you have diabetes people figure your meal intake is somehow their business.
I could rant and rave all day on some of these. I really think having diabetes has helped me to be a better diabetes educator. My endo has type 1 diabetes and I respect the healthcare workers I work with that have diabetes as well. When dealing with them I know that they know that we are not going to be perfect and they don't expect us to be.

Posted by Anonymous on 8 November 2013

absolutely ridiculous! i've read some of your other stuff and this is very consistent with previous entries. not trying to be mean about it but... come on! you can tell a lot about a person's personality and the way they deal with things in general by hearing stories about their health. all of your writings are so overly dramatic. as such, your take on diabetes and the way you manage it are overly dramatic. how can you use the same pen needle 20 times and the same lancet infinitely. this is not a 'compromise'...it's stupidity. anybody who is having to inject insulin 20 times per day is doing something really wrong. that's why when you've wrote in the past about dka and hospitalizations it should not come as a surprise to anyone. the reason why you get a lot of support from these other posts is because these people are all in the same boat. it's not that difficult to achieve/maintain good blood sugar levels. establish a routine, don't eat like a pig (especially carbs), exercise regularly, manage stress get some sleep. understand how these things/not doing them affect your blood sugar and make the necessary adjustments instead of complaining and making excuses. just in case you think you're the only one...i have kids too (3) work full time etc., etc.. perhaps your posts/writings make you feel better about the way you're managing your disease. the reality is you need to devote more of your time to getting a better handle on things. start by changing your lancet and pen needle for crying out loud! i'm surprised this publication supports your writings because you don't set a very good example!

Posted by Rick on 9 November 2013

if those comments were directed at me, let me assure you that I've lived all of this and more. type 1 for 47 years. I am legally blind, I have charcot (look it up) in both feet, neuropathy that, when there was no help, the intense pain kept me up all night before going to work for eight hours. I have gastoperisis (look it up), not to mention the toll this has had on my marriage of 43 years. a healthy sex life? forget it. I've said it before and I will again. you have ALL the tools at your disposal to live a long and healthy live with diabetes. ignore it or treat it lightly and you'll wind up like me, which I would not wish on anybody!

Posted by Anonymous on 9 November 2013

Dear Rick, My comments were not directed at you. It was to the person who began her letter "absolutely ridiculous". Also, some of have to make light of our diabetes. I enjoy Ms. Marples' articles because in my diabetes world, I need to laugh. I'm sorry your diabetes turned out the way it has. Believe me, that is a fear of mine. Do try to take care.

Posted by Anonymous on 11 November 2013

This was a good reassuring article that we aren't the only ones that do these things. I'm on a pump now but for decades used the same needle until it hurt to inject. I suck the blood off my finger after testing. I try hard to put my carbs into my PDM at least 2 weeks before a check up.... I drive my doctor crazy for not inputtting my carbs when I bolus. I am 41 and have had Diabetes for 38 years. Stick to the basics and keep a tight control :)

Posted by Dick F on 12 November 2013

I am reading Dr Richard Berstein's book on Managing Diabetes. I believe what he says yet I know I can not live on the diet he proposes. He does it, but I don't see myself being able to do this even to be healthy. I can take pill and do finger sticks and try to watch my carbs but most of the available diet is carbs, i can't eat just meat and eggs. Healthy veggies have never been high on my list, I try to eat some daily but making a meal out of them yetch.

Posted by Anonymous on 12 November 2013

TANK YOU kATHY

Posted by Anonymous on 18 November 2013

Where do you turn when you no longer want to do shots or pump therapy?


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