Diabetes Self-Management Blog

(Continued from last week’s entry.)

What does it mean to me that I’ve been diagnosed with a chronic illness that 80 or 90 years ago pretty much meant I’d be dead in a few years? What does it mean that, although I should be able to live a full life, I am still more than likely going to have to monitor my blood glucose and inject or infuse insulin and watch my diet and keep diligent watch over when and how much physical activity I do and wait around for the second low, and so on, and so on…for the rest of my days?

What about this question: Has getting diabetes improved my quality of life? At times I feel that it has. But I don’t know. This whole process is tough. Life, as I said, was quite good prediagnosis. It’s still good. Just as good. Or is it? This is what I want to find out, among other things.

I have a lot of questions. Maybe you’ve already figured that out. I want to know why the pain of being diagnosed with diabetes also brings with it both pleasure and understanding, fascination and frustration—and I want to know beyond the easy, trite answers such as “it makes you appreciate the time you have.” Sure. But there’s so much more to explore here.

I’m interested in exploring why I enjoy going to the endocrinologist (and I’m not a hypochondriac, nor do I have Munchausen syndrome). I like being a patient in the U-M health-care system—the rooms, the environment, the process, the excuse to leave work early. I am fascinated by diabetes supplies and the accoutrement I’ve amassed in the past three months. Going to the pharmacy to pick up supplies is an exciting trip—the pharmacists know me; they understand what it is I have. I also really like the smell of insulin, its Band-Aid essence, and find comfort in the routine of snapping a used needle into the sharps container; in changing the little computer chip in the back of my glucose monitor; in forcing just a little more blood out of my pricked finger.

I am frustrated by the assumptions of many people I speak with on the phone—medical supply companies, for example—who operate as if I have years of experience with diabetes and should know exactly what they’re talking about. Excuse me, but what do you mean that I’m three and two? What do you mean I’m five-a-day? (I asked. And, like, duh: three boxes of test strips, two boxes of lancets; five tests a day.) I’m angered that my insurance company thought I needed to be on insulin therapy for six months and then follow-up treatment for six more months before they’d even consider me for an insulin pump. I’m unable to respond articulately to people who believe that diabetes is easily manageable and that I’m lucky to have been diagnosed with diabetes and not something else. As if they know what it’s like! Because there’s so much research, they say. They’ll probably find a cure, they say. Check out this article. Did you hear about the new report. It’s treatable. It’s manageable. It could be worse.

Yes, but no.

It sucks that I have this disease. That I, me: I have a disease. I have this disease. I have diabetes. It’s a part of who I am—a major part of who I am. Anything that requires that I take its existence into consideration in almost every facet of every day cannot be anything but major.

So thanks for allowing me to look into some of the above-mentioned thoughts as the weeks and months progress. I look forward to hearing from you. I’m new to this, and your experiences and comments are welcome.

This is the third of Eric’s three-part prologue as he begins both his Diabetes Self-Management blog and his journey through life as a person with diabetes.

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Comments
  1. Hi Eric. Great piece. I’m Carey from over at . I’ll soon be blogging on the dLife site about my 5-year-old son who was diagnosed at 22 months. Looking forward to reading more from you. Thanks for sharing your story.

    Posted by uphigh-downlow |
  2. Hi Eric,
    I’ve about your experience with being a recently diagnosed diabetic with interest, as it has closely mirrored my own experience (I was diagnosed w/type I about 6 months ago - I’m 25 years old). I’ve found that my own feelings about being a person with diabetes tend to cycle from positive to negative. Right now I’m going through a negative phase. I find myself frustrated at all the (well meaning) people who confuse Type I with Type II, and suggest I have more cinnamon in my diet. I worry about the fact that I’ve been loosing weight (I’m seeing someone next week about this). I’m saddened that I can’t simply up and have a snack, or a second portion of food whenever I want without first doing mental arithmetic. I’m even irked that Splenda doesn’t quite taste like sugar.
    Sorry for the diatribe. It’s not all bad, as you’ve noted, and when I’m feeling up, having diabetes doesn’t bother me at all. I look forward to reading your column and seeing your ups and down too.

    Posted by Josh Leckrone |
  3. Hi Eric. I find your love of doctor’s visits incomprehensible. =)

    As for the ignorant people… my mother told me after I was diagnosed that I was lucky to get it when I did, because there’s so much they can do now. Lucky!! I was diagnosed at 21, five years after my brother who was diagnosed at the age of twelve. My mother had caring for a diabetic for five years and could still say something like that. People who don’t have diabetes just don’t care - and maybe they shouldn’t have to. I mean, I know nothing about multiple sclerosis. Then again, I don’t go around telling people who have it how to handle it, or how lucky they are….

    A couple of things to remember: ofttimes the best response to a rude comment is silence, to a rude question “no”, and some busybodies at least mean well. If you’re ever feeling up to it, you could always ask the person if he would like you to dispel his ignorance, or if he’s more happy flaunting it!

    Posted by Angela Biggs |
  4. Hey guys, thanks for the comments, and I’m sorry to hear about the current negative phase, Josh. Wish I could pass you a little of the positive phase I’ve been going through lately. Maybe I’ll try in my post this week. You’ll more than likely be reading about my transition to an insulin pump. For me, right now, things are going quite well. I’m about three weeks off of injections and have to say that I’m getting pretty good at changing the infusion set for the pump and at calculating carbs. I went out this weekend to two new-to-me restaurants–one was Thai and the other Middle Eastern–and I quite accurately predicted the carbs in both meals. This made me feel pretty good, esp. at the Thai restaurant with their sweet sauces!

    There’s more to talk about here, but I think I should save some of this for the blog. Besides, I’m running out of characters for my comment. Hope everyone enjoyed their weekend!

    Eric

    Posted by Eric L. |
  5. Eric,
    I really appreciate reading your story. I was diagnosed in Nov. 2004, just shy of my 31st birthday. I can relate to so much of what you describe… the initial dr. visits, the excellent endocrinologist declaring so confidently that I had type 1 (the ER docs said I’d just have to take a pill), the well-meaning folks making ignorant or rude comments, etc. This diagnosis is life-altering for sure, but not all bad, as you say.

    I laughed at Josh’s comment about cinnamon. I can’t tell you how many people have said to me upon learning I have diabetes, “Have you heard about cinnamon?” …as though it’s the master cure. I rejoiced when Diabetes Forecast published an article recently about how cinnamon supplements in teens with type 1 actually raised their A1Cs. Ha!

    Anyway, thanks for your insights. It’s always comforting to know there are other 30-somethings facing the same things I’m facing. I look forward to your future posts. Hope you’re loving the pump!

    Posted by suzanne |
  6. Wow - what a breath of fresh air - I am really enjoying your posts and all the comments as well. I was originally diagnosed as Type II just after my 29th b-day and had almost five years of doctors saying I wasn’t doing enough and was I really taking my meds and that my A1C wasn’t getting good enough - but at the same time offerring no education whatsoever… Then last April I ended up in the hospital - unable to breathe anymore… The results of an endocrinologist finally seeing me - I wasn’t really producing enough insulin to get by… So no idea if it is LADA, if it is Type 1.5, or whatever…. Reality sinks in when they tell you you’ll be on insulin the rest of your life - I am only 35 so hopefully that will be a long time… My feelings and emotions pretty much match Eric’s… And I have now been on a pump for almost three months. Love the convenience that it offers - no more having to schedule the meals to match the insulin highs and lows! No more 4 shots a day!

    Posted by Deirdre |
  7. Life with Type 1 diabetes is not fun, it is a lifetime of commitment to stay healthy. I have had diabetes for almost 30 years and my personal goal is to live to see my grandchildren, all of them. My Father was not so lucky. Good luck on the adventure that awaits you.

    Posted by Karen |
  8. I share similar paths with Eric: catch cold -> dryness in mouth -> pee uncontrol -> DKA (Diabetic Keto Acidosis) -> Type 1 at age 32. It’s with me for a year, and I’m having ups and downs, emotionally.

    Just glad that I know I’m not alone.

    Posted by Alice |
  9. I too was diagnosed with diabetes only 7 months ago. I was and still am very athletic, as I have ran a number of marathon races and many 10 kilometer races and in the last 2 years I participated in 2 triathlons. I was always physically active and I am certainly not overweight. I way 120 lbs and I measure 5′6″. Every time I hear about the disease, I hear that I should get my diet under control and I should do more exercise. I would very much like to know what triggered this disease in me. I am the only one in my family who has the disease and I am also the one who is most physically active and I do eat a healthy diet of food and I have never been overweight. As you can see I am scared and frustrated. I am now only working 4 days a week because I just don’t have the same amount of energy as I had before I was diagnosed. I am really hoping that I can get my energy back to normal as I am tired of being tired all the time.

    Posted by Kathleen Lemieux |
  10. I was diagnosed with type 1 diabetes in 2003 and have been through several doctors and endocronologist as well. I have been hospitalized several different times with dk and my insulin keeps getting adjusted and changed and nothing seems to work. I get tired of everyone,including the doctors, telling me I must not be taking my meds right or that I am not eating right or getting enough exercise. People without diabetes think you can take your medicine and watch what you eat and that is all there is too it. Well my family doctor done labs 3 days ago and called yesterday wanting me to go to the e.r because my A1c was over 14, my ekg was abnormal, my sodium and carbondioxide levels are extremely low, cholestoral is high, triglycerides are 676 and white blood count is over 15,000. I had to quit work because I stayed sick and DK seems to be part of my monthly life. I don’t have any health insurance and can’t afford to go to the ER. I thought I could control my type 1 diabetes better if I stayed off work for sometime. I am very educated on diabetes,I mean I’m not ignorant. It just seems like no matter how hard I try nothing helps. Now I have to fight depression too. My legs swell up so bad I can’t stand on them. I started taking 4 units before meals and now am up to 45 and more and 50 to 55 at bedtime. To keep my sugar under 600 today all I had to eat was a small bowl of oatmeal and a salad and my sugars are still checking 200 to 444 with 3 fast acting insulin shots. So I know what everyone is dealing with. I am 29 and this is a life changing event but when you change your life and still don’t get any positive results then what do you do.

    Posted by chicky |
  11. Wow, Chicky, it really stresses me out to read of all of the difficulties you’re having with your Type 1. I don’t know if people are following the comments on this blog entry from last summer, but if anyone is, I wonder if they have any suggestions for you. I certainly don’t have any medical background from which to offer you advice, and given the high glucose numbers and your monthly bouts with DKA, as well as not having any insurance, I can only imagine how debilitating this must feel to you.

    Best of luck in finding something–anything–to help you achieve some greater level of care.

    Eric

    Posted by Eric |

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