Life with Diabetes Complications

Lately, I’ve been coming face-to-face with the scary stuff: long-term complications of diabetes. Those of us who haven’t experienced them tend to think that developing complications is the end of the world. Wrong.

For a project I’m working on, I’ve been interviewing people all over the country living with neuropathy, kidney disease, eye disease, heart disease, gastroparesis — you name it. And I’ve learned some very valuable lessons. Please take a read in the March edition of my Straight Up column over at dLife.com.

A couple of noteworthy notes on complications:

STATISTICSCheckingfeet
As many as 20-30% of American adults have already developed microvascular complications at the time of clinical diagnosis, according to the journal Diabetes Care. Yipes!

PATIENT PERSPECTIVES
“Complications are a like grief process, like a death –- you go through stages of denial to acceptance,” says Shawn Faulk, a Type 1 diabetic living with complications herself. She’s also a CDE at Sharp Healthcare in San Diego, CA. “When I see patients, I want to find out where they are. Often they either feel helpless – like ‘it’s inevitable, I can’t do anything’ -– or they’re just so depressed about their loss and the changes in themselves that this paralyzes them.”

FINDING THE RIGHT CARE
“There is such a thing as living well with complications… This is such an overlooked area in diabetes care,” says Susan Guzman of the Behavioral Diabetes Institute in San Diego. “We try to bring a message of hope to people that it’s never too late to start taking better care of yourself.”

Are you living with complications? I’d love to hear from you. It’s isolating enough just having the ‘betes, but many people tell me that complications compound the feelings of failure. How are you managing with any damage that diabetes has already done?

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21 Responses

  1. Sarah
    Sarah March 11, 2008 at 8:43 am | | Reply

    I have had diabetes for 17 years (almost) and I also have the complication of gastroparesis. Gastroparesis has changed the way I eat quite a bit. A year and a half ago I really enjoyed eating fresh fruits and veggies, but now eating fibrous stuff makes me too queasy, so most of the fresh stuff is out. I eat a lot more cake  Gastroparesis doesn’t make me sad, it is just one more reason to eat more cake.

  2. Stu Davidson
    Stu Davidson March 11, 2008 at 9:11 am | | Reply

    Complications and side effects (both mentally and physically) from type 1 have certainly althered the way I live, from both a negative and positive prospective. I am more health conscious than ever before with regards to excercise and diet as complications are a definite fear motivator. Having already suffered some renal, cardio vascular and retinal compications, I do not need any more. Complications compound the already tricky business of maintable stable BG’s and one’s entire life revolves around how he/she manages thier diabetes health. If you don’t have that, your body and mind suffer, your relationships suffer, your work suffers, your stress rises which makes it all the more difficult to maintain balance. I have total admiration for others who have a full-time career with his/her health, in addition to one’s financial earning career (that you must have to pay for this every single day), family, etc. It’s no wonder why so many of us feel overwhelmed and many times “less than,” as our society is biased torward, and rewards physical beauty, health, financial success, and the “get ahead, get mine and forget you” mentality that fostered in the 80′s. Those who face this every day for life, w/o any vacation are real champs for not simply surviving, but thriving and working to help themselves and others.

  3. Rob
    Rob March 11, 2008 at 9:29 am | | Reply

    I’ve been diabetic for just over 20 years now – I’ve had moderate to severe DME (diabetic retinopathy) for the past couple of years. I’ve had 5 or 6 laser surgeries including a panretinal photocoagulation a couple of years ago and my vision is more or less stabilized but I don’t see as well as I used to. My ‘good’ eye is deteriorating much more slowly so that’s a good thing.

    It probably bothers me less than it should – I’m pretty good at this point at accepting the reality of this ailment and getting on with my life. I definitely feel like a failure sometimes but I also know that it’s not helpful and unrealistic.

    I feel hopeful that there will be better treatment options down the road – this really helps me keep going sometimes. That and having kids – it’s really helped me focus on the day to day management to try to minimize the progression.

  4. Sarah (the
    Sarah (the March 11, 2008 at 10:10 am | | Reply

    I have had T1 for 24 years, and although I don’t have any complications (yet) I am absolutely terrified of what I will do when and if they occur. I am terrified of living in a “damaged” malfunctioning body, especially before I reach 30.

    I just want to thank Amy and all those who responded to this post for giving me hope and support.

    For once, people are actually talking about those who are ALREADY living with complications, instead of ignoring the fact that they happen. You always hear prevention, but what about help for those who already have them?

    Also, many people develop complications despite good control (lack of c-peptide?). It’s time to stop playing the “blame the diabetic” game.

    To blame a Type 1 diabetic for the disease process, who is struggling daily just to LIVE, let alone successfully replace their pancreas with relatively primitive tools, is cruel. If it’s true that those with Type 1 diabetes often develop complications due to autoimmunity, genetics, and/or a lack or c-peptide, I demand an apology from the insolent diabetes education community.

    Thanks again everyone for sharing your stories and thanks Amy for tackling this often ignored topic.

  5. Cody
    Cody March 11, 2008 at 12:02 pm | | Reply

    I am only 31 and have had diabetes for only 5 years, but for 3 out of the 5, I couldn’t get a doctor to treat me aggressively enough. By the time I did find a doctor who did treat my diabetes aggressive, I found out I have Peripheral Neuropathy and Autonomic Neuropathy. The peripheral neuropathy only affects my feet and is under control with medication and anodyne treatment when it flares up. The autonomic neuropathy is affecting my heart and bladder. They tell me that I will eventually have to have a pacemaker and have to learn to self cath myself. The heart conditions are also under control with medication. Since I have found my new doctor who does treat me aggressively I have lowered my risk of the complications getting any worse.

    Cody

  6. Nick
    Nick March 11, 2008 at 1:45 pm | | Reply

    I’ve had type 1 diabetes for eight years now, and I was told this year that I have “mild background retinopathy.” WHAT? I’ve only had the D for 8 years (as far as I know), and it’s mostly well-controlled. It’s very frustrating.

  7. Lauren
    Lauren March 11, 2008 at 7:09 pm | | Reply

    The fact that complications are possible even with the tighest control terrifies me. Keeping my A1c under 6 is like a talisman, but it is probably not protective against all types of sequelae. An endocrinologist told me glycemic control is not enough to prevent them, but it’s the most important index we have in predicting the development of complications.

    There’s some evidence, according to articles I’ve read through PubMed, that genetics play a role. Certain HLA types are less likely to get complications, and there are HLA types linked to less aggressive beta cell destruction. I’ll keep my eyes peeled to see if these genetic tests get beyond the experimental stage and become part of the diabetic workup.

  8. Linda B.
    Linda B. March 11, 2008 at 11:10 pm | | Reply

    This is my 30th year with diabetes. I was diagnosed at 9 with type 1.
    the opathies as I like to call them are some of my closest companions. I have had 6 lazer treatment in each eye for retinopathy. I have neuropathy in my hands and feet and itis also spreading into my spine, sometimes the pain can be unbearable. my gastroparesis is to the point that when I am using my pump I set my boluses for 4 hours or more, my kidney functions are heading downhill pretty steadily. then theres the thyroid, my kidneys and my heart problems too.
    Sure it sounds pretty crappy. Most people think my life must suck and that my life is a fate worse than death, and don’t I hate all these things that have happened to me?
    My answer to that is no. I don’t hate any aspect of my life. Diabetic complications or not. I have a very fulfilling life. I have a partner I have been with for five years. He is also diabetic. we have lost a baby due to my diabetes complications. I have almost no vision left in my left eye and I am night blind and have some color blindness issues due to the lazer treatments I have had over the years. Do I let that stop me from writing on the computer or reading books or cooking or just seeing the sun come up everyday. No, I came to terms a long time ago with my complications. I do hold myself responsible for the progression of my complications. I did play a part in this. I know that and I accept that.
    But I made myself learn how to compensate for the limitations other people see as disabilities. I embrace the good and the bad the highs and the lows and I have chosen to live life everyday to the fullest. I know I have complications but they do not make me any less valuable or important than the people who have “perfect” health.
    I do not let diabetes and all its supposed horrible outcomes rule me. When that happens thats when this disease wins. I am a damn hard fighter and I will not let this disease overtake me. I live everyday with joy and I love everyday with every fiber of my retinopthic, gastroparesis, neuro-throbbing, protein throwing, thyroid not working, pancreas pooped out cell in my body.
    So call me crazy, call me stupid, call me whatever you want, I know in my heart and my head that this disease is what you make of it. It can be your friend or your worst enemy. I have chosen to be friends. Its not going anywhere. It’s here 24/7. I don’t get time off. So I adapt and make changes in my daily life to compensate for the limits I may have. My life is full my heart is happy and I make it a point to learn new ways to make my daily life easier and user friendly for me. It works for me and that is what matters most.

  9. AmyT
    AmyT March 12, 2008 at 7:11 am | | Reply

    Wow, Linda, that’s quite a story. Thank you for sharing it.

  10. Katie I.
    Katie I. March 12, 2008 at 2:30 pm | | Reply

    I am on the exact same page as Lauren (above). I am terrified of complications, especially when I hear that complications can even happen to people with “tight control,” and sometimes don’t happen to people who don’t have great control. It seems so unpredictable, and that’s what is so scary. Amy, I am glad you are pursuing this topic and would love to see any posts on research regarding whether genes (or other factors) influence the likelihood of complications.

  11. Anne
    Anne March 14, 2008 at 11:19 pm | | Reply

    Linda, you are an inspiration. Your words leave me a little lost for something meaningful to say, but I hope that you enjoy every sunrise a little more for the bright spirit you are and for the rest of us that read your words.

  12. Linda B.
    Linda B. March 15, 2008 at 2:46 am | | Reply

    Thanks Amy and Anne, keep at it and stay positive!!

  13. Boyd
    Boyd March 15, 2008 at 4:51 am | | Reply

    There is a real good article on abcnews.com. Here is a little snipit. http://abcnews.go.com/Health/GadgetGuide/Story?id=4455227&page=1

    At the conference, “Therapeutic Insights from New Diabetes Gene Discoveries,” the discoveries scientists will share on the subject of diabetes is about to turn treatment for the disease on its head. There aren’t just two kinds of diabetes, as the medical textbooks instruct. It turns out there may be as many as 12. That means everything known about diabetes — what medicines work for it and what lifestyle changes help and what diet is best — may be about to change.

  14. Mel
    Mel March 15, 2008 at 10:43 pm | | Reply

    Yay, it’s great to see more attention paid to living with diabetes complications. It seems that there’s a mantra of tight control to avoid comps but a taboo about ever mentioning what happens if you do encounter them and yes the blame game is so unfair and counterproductive. I’ve had type 1 for nearly 40 years now and have battled retinopathy and am sort of hanging in there with bp issues and questionable but steady kidney function.

    Some years ago I researched and wrote an article called Complications:What if? about complications with type 1. I was very inspired by the people I interviewed, those who had not just conquered but transcended complications. Article can be found at http://realitycheck.org.au/complications.htm if anyone is interested.

  15. SteveRRR
    SteveRRR March 16, 2008 at 6:14 pm | | Reply

    Thank you all for writing here and special thanks for Amy T for all the work she does about Type 1, our common link here.

    I’ve have type 1 for 42 years. My sister Cindy gave me one of here kidneys in Nov 2005 to counter balance the dx of ESRD. I’ve had 1000s of laser burns to both eyes.
    The absolute worst diabetic complication I’ve had was being arrested by police as a result of my actions during a low. Finally I was found Not Guilty, but what an embarrassment and expense of time & money. My lawyer’s wife has type 1 too.

    Sometimes diabetes wears me down a little. I keep making the changes I need to keep moving forward in my life.

  16. anon
    anon March 17, 2008 at 2:22 pm | | Reply

    yes, complications are random. i’ve had t1 for 27 years and was in bad control as a teen and into my twenties. since my mid twenties i’ve been in decent, but not great, control, with A1Cs between 7 and 8.

    i’ve had no normal complications, although i did get cataracts very young, and went through an early phase where i had lots of yeast and fungal infections (mostly gone now).

    no retinopathy, no neuropathy, no kidney problems, no cardiovascular problems.

    on the other hand, however, i have four–not just the one–related autoimmune issues: diabetes, hypothyroid, vitiligo, and now something new which i’ve forgotten the name of.

    so i don’t exactly have it easy ;)

    i’m afraid of kidney failure and very afraid of blindness, because i’m a very independent person. but i don’t feel terribly endangered, and that’s probably denial.

  17. None Given
    None Given March 17, 2008 at 3:53 pm | | Reply

    http://care.diabetesjournals.org/cgi/content/full/30/10/2756

    Your A1c may not accurately reflect your average BG, it can vary from person to person. This may explain some of the complications in people with good control.

  18. Marjolein
    Marjolein March 24, 2008 at 9:06 am | | Reply

    Hi everyone,

    I am a diabetic for 12 years now, since I was 12. I’ve always found it very hard to live with diabetes. Keeping myself alive averyday by taking insuline seems hard enough and I have never really been able to keep my BG under control for longer periods of time. Since three days I have a significant loss of feeling in my hands and a conastant ‘tingly’ feeling in my feet and legs. My feet would feel ‘asleep’ and numb sometimes before. This (lack) of feeling in my hands and legs scares the hell out of me, I know it won’t get better and can only get worse. Tomorrow I have an appointment with the doctor. For the first time in years, I’ve been monitoring my BG very closely. I realize I will have to change my lifestyle drastically by exercising more and keeping a healthier diet. I only hope that I will succeed in this and that complications will be ‘stable’ for a while.

    I guess I’ve been in denial about having a chronic disease for the past twelve years. I know I should try to look at the bright side of things, to see the possibilities and not to focus on the impossibilities. It’s hard though.

    I’ve found it reassuring to read your stories here, so I’d like to thank you for sharing them.

  19. Cherise
    Cherise September 15, 2008 at 12:20 pm | | Reply

    I recently was diagnosed with peripheral neuropathy. A lot of the problems with controlling my blood sugars deal with the fact that I am on atypical antipsychotics because of my bipolar disorder which drastically have an affect on a person’s diabetes. Without these drugs though my bipolar is out of control and then that also affects my diabetes because I get into a manic episode, which can go on for days, and don’t think that I need insulin or a depressive episode where I just don’t want to do anything with my diabetes management.

  20. Mikey
    Mikey April 7, 2010 at 5:03 pm | | Reply

    I discovered that I was type 2 about 6 years ago. The diabetes is hard enough but the Neuropathy is killing me. The pain is in 100% of both feet, ankles, some in my hands too. Try making your living as an artist with that.
    The pain is unbearable and intereferes with everything my life. It is so bad my wife cannot even touch my skin and that is the worst.

    I’ve been on all the popular prescrip pain meds, OTC’s,herbs, etc., but nothing takes the pain away. I was taking Lyrica but it makes me drunk and loopy, Neurontin-makes me crazy, Tramedol is junk, and others but nothing helps. Even tried those electro thingys. But since I cannot touch my feet nothing can be applied to the skin so anything like that is out too.

    My A-1C was good a few weeks ago, under 6, so that has nothing to do with the pain.

    I can live with taking care of the Diabetes itself, but what the heck can I do about the hurt. All the Docs I’ve been too say it is too far gone to do anything, live with it and since I probably had Diabetes for 10-15 years before being diagnosed the nerve damage is permanent.

    As for overall health, I’m not much overweight. I’m 6′, 220, 38″ waist. I’ve always lived a healthy life, no smoking, very seldom did any drinking (never hard liquor), never any drugs, always took my vitamins/herbs, ate well and excersized 80% of the time but I still inherited this crazy disease.

    I’m only 53 and this is not what I wanted to do with my pre-golden years.
    We are going to an Endocrinologist tomorrow (Apr 8) and I hope he can help. If anyone knows a rmedy please let me know or I’m heading to Cali in search of Mr Cannibus. Thanks, Mikey

  21. mobhomeir
    mobhomeir January 3, 2012 at 5:15 am | | Reply

    I am already 52 years of age and I’ve been diagnosed I had diabetes. I stopped the medications prescribed because they were too expensive. Actually my blood glucose is not to high that it looks alarming. My doctor said am a chemical diabetes that’s why he never prescribed any medicines because I just have to have a regular exercise. What is meant by “chemical diabetic” then?

    Mobhomeir

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