Today I am complaining about diabetes, writing about the inevitable frustrations that come with the disease, so that you don't feel alone. It's not unusual (at all) to feel this way. But first, a short, related aside. This past year I have spoken to many students about diabetes: what diabetes is; explaining the differences between Type I (autoimmune disease) and Type II (insulin resistant); encouraging students to be strong in the face of this chronic disease; assisting the newly diagnosed who feel shame, anger, fear; witnessing/listening to their stories about how long it's taken them to even say the word "diabetes" and accept they have it; answering a myriad of questions.
In all my visits with students (and teachers/professors) the same two questions always come up during every Q&A: Is there a cure? Can you "reverse" diabetes? And when I answer "no, there is no cure or reversal at this time," I feel like I'm puncturing their one bubble of hope. I say to be careful of pharmaceutical companies or any other outfits announcing drugs or herbals that promise a cure or reversal of diabetes. There are a myriad of drugs to help "manage" the disease, but there is no drug to cure it. "Curing/reversing" and "managing" are two different things. However, asking these questions is understandable. It would be so much easier to take a pill, have surgery, and be done with thinking about diabetes. Instead, "managing" diabetes demands daily work (exercise, checking blood, a mindful diet).
Note: diabetes is a chronic disease afflicting the pancreas, demanding the individual to become an expert on the pancreas, an expert regarding endocrinology, an expert on food (to know how many carbs/fiber in a serving), etc.
There have been a few (very few) kidney/pancreas transplants and of those, even fewer have been successful. Also, these transplants cost well over $60,000.00 and there are many risks which include organ rejection.
When I hear the question, "can diabetes be reversed," I'm hearing and feeling the person's frustration, the wish that something could make diabetes turn around and disappear. So when I reply with a "no, not really unless you have a lot of money for a kidney/pancreas transplant but with that comes much risk, they haven't perfected it as they have with heart transplant surgery," I'm always sad I can't say otherwise not only for the person asking the question but for myself as well. Lately, I've been directing them to Deb Butterfield's 2001 book, showdown with diabetes. Butterfield writes of her own struggles with diabetes type I and her journey in choosing kidney/diabetes transplant surgery. The first transplant surgery she underwent failed because her body rejected both organs. The second transplant surgery was a success and she was able to experience ten years of living normally (only needing to take daily immunsuppresion medication). Here is freelance medical writer/diabetes specialist, David Mendosa's review of her book from 2001 (click here). Butterfield died in 2011 at 51 years of age. Yet, for most of her life, Deb Butterfield was a strong advocate for a cure. She did not want the medical community to be complacent, to settle simply with guidelines in managing the disease. She wanted swift and thorough research leading toward various ways (not just one way) to "reverse," to "cure" diabetes.
My writing here is situated squarely within the space of frustration. I see the individuals in my audiences who ask me, "Is this reversible?" Maybe they have a family, are strapped financially, have no time to exercise or cook healthy meals, instead relying on fast food which always contains hidden sugars. It's one big slide into the space of complications because that's exactly what happens when an individual keeps putting off exercise, eating foods that cause glucose elevations in the blood stream, in the organs. And this is what is so frustrating about this disease. One cannot "see" the damage to the body until it's too late. Every time one's blood glucose is elevated, it is cumulative, meaning that it all catches up to you at some point. There is no escape even though an individual may have a banana split, french fries, mashed potatoes, a cookie one day and feel just fine an hour later. It is cumulative.
Last week I read an article in the Los Angeles Times entitled, "In the fight against diabetes, research points to treating the brain" by Melissa Healy. It was the first time I felt hopeful about a possible cure. Healy cited research using "growth-promoting peptides" injected into the brains of mice that suffer from diabetes. For 17 weeks blood glucose levels were normal in these mice. 17 weeks! Most compelling was realizing that by considering diabetes as a "brain disease" this could lead to a cure or reversal. The visceral high feeling of hope was a surprise to me. I realized that I too, like the people in the audience, want to ask, even plead: "Can this be cured or reversed?" By the next day, my hope quickly crashed when I read another article about this research cautioning that it will take longer to develop due to the discovery that such "growth-promoting peptides" are carcinogenic. Hence, you may be reversing the diabetes while also releasing carcinogenic cells in your body leading to cancerous tumors or lesions. This leads me to a cautionary note on pharmaceutical drugs: they always come with side effects. The most important work in managing diabetes falls on us. The work: becoming familiar with our bodies and the foods that work and don't, checking our blood on a daily basis, achieving a good daily exercise regimen that keeps our glucose in check, keeping the stress at bay. Doing the work, we become masters of our very unique, fascinating bodies. It isn't all doom and gloom. However-- my intent today is to address those moments when we feel "doom and gloom."
And sometimes that feeling also comes from thinking this is all our fault. It is not. Our society has created (there's a long history) a food culture that has allowed diabetes to explode. A good video to watch (and it's on Netflix) is "Sugar Coated." Here's the link and the site: Click here.
The hope: that there is much more research being done right now to end diabetes and hopefully in our lifetime, we will see it happen.
The frustration: that there is no cure or reversal right now (unless you want to take the risk and are wealthy enough to place all your bets on a pancreas transplant). Right now it's all about the individual managing diabetes. Because every individual is so highly unique (think "fingerprint") a drug, a diet, an exercise regimen does not work for everyone. Therefore, it becomes each person's individual journey to figure out what is best. Diabetes demands each individual to test her/his blood every day to monitor glucose levels. This can be expensive, due to the high cost of glucose strips (click on article here that discusses strips and cost) and meters. Hopefully, in the near future, glucose strips will be much less expensive. I would like to see glucose strips free to all and that includes those individuals who have been told they have "pre-diabetes." Sometimes I think that if everyone learned to periodically check their blood, to learn about glucose levels and the importance of food choices and exercise, we would see a steep decline in diabetes diagnosis.
I get that. And to maintain that discipline, some people need to periodically complain, get angry, vent in order to achieve further levels of committed discipline.
My story: I am not obese which means that my diagnosis of diabetes type II (insulin resistant) is all about genetics. When I tell people I have diabetes, many of them look surprised. "But you're not overweight," they say. Or they will look me over and say, "But you're so slim and fit." They don't know that my A1C level (glucose level) can be the same as a person weighing 250 pounds (and I weigh 118). The person weighing 250 pounds has diabetes due to obesity and is controlling it and I am too. The difference has to do with obesity vs. genetics. If I skip exercising just one or two days, my glucose level elevates. If I have stress and I am not taking time to meditate or do a few minutes of at-home yoga in the evenings (I use tapes/videos), my glucose level elevates. Food also does the same, demanding my attention there. You who have diabetes know what I'm talking about.
Like you, sometimes I want to rebel, and I do, but not for long because the consequences of rebellion drive me back to discipline. That's when this book (below) or Deb Butterfield's book (above) can help. Maybe you need to read these now. Just remember that if you feel like rebelling (getting completely off "managing diabetes"), diabetes doesn't go away. That's why they call diabetes "chronic." You may think you are thumbing your nose at diabetes when you don't exercise, when you continue to choose foods that raise your glucose levels. Yes-- it sucks, it's not fair, it's difficult. So write about your frustrations, tell someone, speak it, join an online diabetes discussion site. Being alone with this chronic disease can certainly contribute to your frustration which can lead to not taking care of yourself, experiencing complications. David Mendosa, who I mentioned earlier, can also be of use to you. His website, "Mendosa.com Helping Defeat Diabetes Since 1995" is the largest online site available and it holds a wealth of information for the newly diagnosed and for those who have been managing Type I (autoimmune disease) or Type II (insulin resistant) for many years. He also posts the latest research and if you join his e-mail group, you'll automatically be sent his newest posts. You can also e-mail him and he does reply!
And so dear reader, I wish for you strength, calm, clarity, and discipline in managing the disease by venting your frustrations and allowing yourself to complain. I believe you when you tell me that it feels like one big side job because it certainly demands a lot of time. Learning to become knowledgeable about the inner workings of the body can certainly feel like you've been thrown into a medical school class that you never asked to join. Because diabetes affects so many areas of the body, there's a lot to learn. I believe you when you say you just "can't take it anymore." I believe you when you say you are doing everything you need to do and still, some days, glucose levels are elevated. I get it when you say you feel defeated. I believe you. I hear you. I stand with you.