15 posts tagged “type 2 diabetes”

“I have been empowered to face the challenges of my condition” – Member Deb shares her journey with type 2 diabetes

Posted October 20th, 2016 by

Meet Deb (optimisticrealist), a self-described optimist who found no challenge too daunting, exercised daily and maintained a healthy diet. We recently caught up with her and she told us how her type 2 diabetes diagnosis changed the way she thought about what it meant to be healthy.

Learn more about Deb’s story and what she had to say about empowering herself through education, finding veganism and learning to live with her new normal.

Tell us a little bit about who you are. What was life like before your diagnosis?

I have always been an optimist, nicknamed Pollyanna for my focus on the bright side. I had the sincere belief that with creativity and perseverance there was no challenge that I could not surmount. If all else failed, I could reframe the situation to find the positive.

How has life changed since your diagnosis?

Having had none of the classic symptoms, my diagnosis of type 2 diabetes completely blindsided me and caused me to wonder if optimism was just another word for denial.

I was diagnosed while in the hospital and sent home with prescriptions but no instructions about how to live with my new reality. I will never forget standing at the pharmacy counter at 10 pm on the day I was discharged, exhausted and confused, getting a crash course in how to use my glucometer and lantus.

For the first weeks, I slept with the lights on as if somehow that would protect me from…what? I awoke each morning thankful for having awakened but my second thought was that there was another deer-in-the-headlights day ahead.

I couldn’t live like that, didn’t want to live if that was to be my life. I had believed myself a healthy person, exercised almost daily and had a physical job, ate no junk — yet here I was with a serious, chronic, progressive condition. I struggled with self-blame and regret and became depressed. I knew that the only course for me was to take charge of the situation, and that meant learning everything I could about diabetes management.

I spent every free moment online and I began to have hope that I could improve my condition or at least delay its progress and avoid complications. The greatest revelation was reading about veganism and diabetes. I found a registered dietician who is also a certified diabetes educator and herself a vegan. I was already vegetarian for many years so I decided to give it a try. It has changed my life, and my diabetes, for the better, in a number of ways.

Within two weeks of my last bite of animal food, I was off all insulin completely. After a lifetime of struggling with my weight, the pounds came off at the rate of about 1.5 pounds/week — effortlessly. As I approach the two-year anniversary of my diagnosis, I have had three consecutive a1c tests under 6%, test my blood glucose only once every other day, and never count a carb! I have been able to lower my blood pressure and have maintained my weight loss for over a year.

In the forums you talk about the importance of maintaining an exercise routine. What motivates you?  

I am a lifelong exerciser, but due to extreme fatigue I was unable to work out for months. After many tests to rule out other causes, my doctor was persuaded that the drug side effects were the culprit. I couldn’t wait to get back to the gym! But it has been a long and winding road to regain lost strength and endurance. I am motivated to keep at it because I know that both my blood pressure and blood sugar are dramatically improved, and I even break a sweat some days! I have not missed a day in about 6 months…some days are easier than others but my mantra is “do what you can when you can.”

In your profile you mention struggling to come to terms with your condition and the way you thought about your health. What advice can you offer others who may be going through the same thing?

My advice to others who are feeling overwhelmed by their diagnosis is education, education, education! An educated patient is an empowered patient. Learn everything you can from reliable, evidence-based sources, then teach your doctor. If your doctor is resistant to an educated, empowered patient, fire them and find a new one.

Has PatientsLikeMe has helped you manage your condition? What does it mean to you to donate your data?

PatientsLikeMe has been a tremendous resource for me in managing my condition. I have explored a number of online sites and it is by far the most comprehensive compendium of information about a wide array of conditions. I love being able to read about real patients’ REAL experiences with treatments, it is invaluable as a way of tracking my own data, and most of all, I find the forums a wonderful, welcoming, civil place to learn from and help others. PatientsLikeMe is as much a necessary part of my day as eating, sleeping and exercise!

I have been empowered to face the challenges of my condition by reading evidence-based research. Donating my data is a way of “paying it forward.”

 

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Meet Christel from the PatientsLikeMe Team of Advisors

Posted November 29th, 2015 by

We wanted to take a minute to introduce you to Christel, one of your 2015-2016 PatientsLikeMe Team of Advisors. Christel who was 12 years old when she was diagnosed with type 1 diabetes, shares openly that she spent a lot of her teens and twenties ignoring its existence.

But 32 years later, Christel has made peer support and advocacy her focus. She’s founded a psychosocial peer support conference for adults with diabetes (and caregivers, too) and co-founded an advocacy organization for easy and effective diabetes policy advocacy. Christel also writes a popular patient blog, ThePerfectD.com, and speaks publicly about her experiences.

In a recent interview (below) she talks about societal stigmas surrounding diabetes and how important it is to connect with others who share this condition.

What has been your greatest obstacle living with your condition, and what societal shifts do you think need to happen so that we’re more compassionate or understanding of these challenges?

Society thinks that diabetes is a punchline; something that shouldn’t be taken seriously.

We need to stop making fun of diabetes. All those pictures of desserts with the hashtag #diabetes? People with diabetes aren’t laughing. In fact, it only perpetuates the ignorance.

Those who are diagnosed often don’t get the proper education and care they need, and don’t talk about it, as the stigma surrounding diabetes due to misinformation prevents us, as a society, to address how to support people with this disease.

Until that changes, the increase of diabetes diagnoses will continue. The latest statistics show that 1 in 3 U.S. adults could have type 2 diabetes by 2050 if we don’t change our attitude and educate the public on what diabetes is, what it isn’t, and what can be done. (And the number of type 1 diabetes diagnoses are also increasing, although we don’t know why.)

What needs to happen? Education, compassion, and a willingness to speak up when someone makes a joke about diabetes.

How would you describe your condition to someone who isn’t living with it and doesn’t understand what it’s like?

29 million Americans have a diabetes diagnosis (that’s 11% of the population!) and 86 million more have a pre-diabetes diagnosis, yet there is a lack of true awareness about what the disease is and the gravity of a diabetes diagnosis.

Type 2 diabetes is a metabolic disease. Individuals diagnosed have issues with the insulin they produce; not enough insulin or a resistance to the insulin they do have. People with Type 2 can manage their diabetes a number of ways: diet, exercise, oral medications, and insulin – or a combination of any of these.

Type 1 diabetes (which I have) is an autoimmune disease, and we comprise about 5% of the diabetes community. My body attacked the insulin producing cells in my pancreas, so I must inject insulin to manage my glucose levels. Without insulin, bluntly stated, I’m dead within a few days (if not sooner).

Even with insulin, I walk a fine line every day attempting to keep my blood glucose levels in range. Too much insulin in my body and the consequences can be immediate: mild impaired cognitive function to seizures, coma, or death. But too little? The consequences can be just as devastating: long-term complications and/or the poisoning of my body through ketoacidosis.

I’ve oversimplified these two main types (there are other types of diabetes!), but here’s what shouldn’t be oversimplified: insulin is not a cure, you cannot “reverse” or “cure” diabetes (you can maintain), you don’t get diabetes from being fat, you don’t get diabetes from eating too much sugar, and if you ignore your diabetes, the complications are deadly.

If you could give one piece of advice to someone newly diagnosed with a chronic condition, what would it be?

Grieve.

It’s perfectly acceptable to fall apart and mourn the life before your diagnosis – and your caregivers should do the same. You can ask: “Why me?” and shake your fist at the sky.

There will be plenty of time to be brave and courageous and inquisitive. Get the grief out of the way first. Don’t put it off or deny it as I did, years after my diagnosis, because grief is inevitable.

But don’t get stuck in your grief. Find others who can help and support you and guide you through your next steps in the journey.

How important has it been to you to find other people with your condition who understand what you’re going through?

Diabetes can be a lonely disease. For years after my diagnosis, I didn’t know another person with type 1 diabetes and wished that I could talk to someone about the daily challenges and the fears.

The Internet opened up my world and gave me confidantes, compatriots, and support from all over the world. Without the ability to get help online and share my thoughts and experiences, I truly believe that I would not be living well with diabetes today.

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