23 posts in the category “Diabetes”

Member Chris finds the uplifting side of type 1 diabetes

Posted February 23rd, 2017 by

“I am the only 7-fingered diabetic record-holding powerlifter and motivational speaker you know!” Chris (ChrisRuden) says in his profile. He was born with two fingers on his left hand and a shorter left arm. He was bullied in high school, and he struggled with depression, alcohol and drug use.

Chris was diagnosed with diabetes at age 20, when he was in college studying law. His diagnosis inspired him to shift his focus to health and wellness (personally and professionally), and he earned a degree in Exercise Science and Health Promotion from Florida Atlantic University. He runs an online nutrition and fitness coaching business and he published an e-book called The Art of Losing Body Fat. He holds four state records in powerlifting (with one hand)! He is also a motivational speaker who has given talks at schools, businesses and organizations like the American Diabetes Association across the U.S.

We recently caught up with Chris about his interests, overcoming adversity and the upshot of his diabetes diagnosis.

What are your three favorite things to do? What do you love about them?

I love powerlifting, speaking and helping people get in shape! Powerlifting allows me to compete against myself and push my limits. Learning to lift properly as an amputee and learning to stabilize my blood sugar while lifting with diabetes was tough. But I love the challenge and satisfaction of working towards a goal and achieving it – no matter how long it takes. Speaking is my passion because I get to share stories that help people overcome hardships in their lives. Speaking allows me to be honest and real with the audience. There is nothing better than people writing me months after a talk or seminar about how they are still motivated and fueled by my talk. Helping people get in shape online is my business, but it is also my passion. I know what it is like not to be confident in your body, and I get the chance to help people with that mental and physical struggle daily.

How did growing up “being different,” as you say in your profile, shape your life? Has it helped you adjust to life with diabetes?

I was bullied and picked on for being different. I tried to stay strong as much as possible but it was hard and depression did get to me. It took a while to figure out that other kids or teens who would make fun of me for something I can’t control probably have a lot of personal issues they are dealing with. I focused on doing the best I could with what I had, and that philosophy carried over into my diabetes management. I was mentally prepared to handle the burden of diabetes because I knew it took the right mindset to thrive.

Could you share your diabetes diagnosis story with us? Why do you consider your diagnosis “the best thing to ever happen” to you? 

I was actually working in the ER at the time I was diagnosed. Weeks prior, I had been going to the bathroom 20+ times a day and I was so thirsty and irritable. My mom worked for a urologist in the same building so we did a urine test just in case, and I was admitted to the hospital with a blood sugar of 510. If it weren’t for diabetes, I would’ve never switched my major from law to exercise science, I wouldn’t be working with other type 1’s in the community, and I wouldn’t have found my true calling in life.

It seems like defying limits is a big theme in your life. What are some limitations that you’ve shattered? What motivates or inspires you to live this way?

Limits are problems and all problems have solutions. I have broken a few state records in powerlifting, deadlifting over 600lbs when the original limit was thought to be: “I can’t deadlift because I’m missing a hand.” Playing drums by sticking a drumstick through a glove finger hole was another limit. I also shoot guns, go fishing and occasionally rock climb. Some might see that as overcoming limits; in my case I just call it living.

What advice do you have for someone dealing with multiple health issues or going through a rough patch with their health?

Keep going. Think logically on what you can do on your part. Do the best you can with what you have where you are right now. By focusing on what you can control and not what you can’t control, life becomes a little more clear.

As a new member, what’s your experience on PatientsLikeMe been like so far, and what are you most interested in learning more about going forward?

I love the community and I’m really interested in just learning about other peoples’ perspectives and how they manage daily. I love to see people succeeding, regardless of how big the success or how hard the obstacle.

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Meet Lindsay from the PatientsLikeMe Team of Advisors

Posted February 9th, 2017 by

 

Meet Lindsay (Shyandspicy), a member of the PatientsLikeMe 2016-2017 Team of Advisors living with bipolar II, fibromyalgia and diabetes. We recently caught up with Lindsay to learn how she finds purpose in her relationships with her family, her faith and helping others. 

Keep reading to get to know her story and how she tackles the obstacles of living with her conditions through research, self-advocacy and connecting with others.

What gives you the greatest joy and puts a smile on your face?

There used to be not much that could give me joy or even make me smile. Now I can say one of my biggest joys in life is bringing pride to God and my family and other supportive loved ones. I have put them through a lot of strife and knowing that they recognize my hard work and attempts at trying to correct the past and become a better version of me brings joy. Along with that, I get a smile on my face when I spend time with my son, who is 13 and my little sister, who is 30 years younger than me. Experiencing life again through their eyes has a whole new meaning!

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

Stigma and high functional ability are the greatest obstacles. Because people can’t physically notice all my diagnosed illnesses on a daily basis (bipolar II, fibromyalgia, diabetes and other mental health illness) due to me being so highly functional. I have been denied much-needed services such as disability and compassion among others because I can mask how severe I am at times due to societal expectations of being what is normal. Society needs to start to recognize that we all are different and experience some different type of hurts/traumas in our lives but some of us can’t recover as well from those things. That does not make us less than. Instead of shaming us for displaying a need for help, society needs to encourage and applaud the strength in getting help. It starts though with ourselves not feeling embarrassed about our illnesses, whatever they may be, then family and friends and hopefully society.

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

This is hard for me to answer because many of my conditions (diabetes, fibromyalgia, mental health illness) are not seen and overlap. The best way to describe I think is that I know I have the potential to do great things, but mentally, physically and emotionally I struggle so hard to achieve this. First, I constantly talk myself into waking up in the morning, moving around, taking medicine, getting dressed, eating, overcoming fears, slowing down on taking on the world, filling out paperwork, and other basic skills that people tend to take for granted. I am a high functioning person so I’ve adapted to societal ways, but physically I’m in constant pain, the kind where every joint, etc., feels like a train has hit me and nothing I can do takes it away. Mentally, I am in constant battle of trying to build myself up while tearing myself down, remember little tasks and trying not to be confused (because I am intelligent and it makes no sense that I can’t remember simple things anymore). Emotionally, I am constantly finding exits, bathrooms, etc. in case I have a “melt down” so I can do it in private. I act cold, inappropriate and ruin relationships because I misunderstand things emotionally. All because I don’t want to be a bother or appear weak.

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

Research, research and research. I am a big reader and nerd already, but the one thing that has helped me is knowing what I am talking about when I go into the doctor’s offices. They may not believe you because some doctors are not up on research, but at least I know what tests I should ask for, medicines I should try and treatments to seek. If you can’t get it from a certain doctor, be an advocate for yourself. Just because one doctor says one thing, doesn’t mean it is entirely true. You can always change doctors, hospitals, etc., I never understood that. Another thing is keep track of symptoms, changes, etc. It helps to know when your condition is getting worse or better.

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

Very important. Without finding PatientsLikeMe.com in April 2016, I think my life would have been very different at this point. This site has given me courage, comfort and belonging. That was my major piece missing in my recovery of self, a sense of belonging…and finding non-judgmental and understanding strangers who get it is rare. This site brings everyone together and then some!

Recount a time when you’ve had to advocate for yourself.

I am always having to be a constant advocate for myself with doctors and my state funded insurance. It is SO frustrating and many times I want to give up, but I know no one else is going to do it and something needs to be done. Here is an ironic situation I run into a lot: I have applied for bariatric surgery 5 times. I’ve been denied 5 times due to mental stability, yet I need multiple test services, etc. and when I go to get the prior authorization, I am denied stating I need to just lose weight. Hmmm…interesting. You won’t pay for the surgery, you won’t pay for the coverage to get better sleep to lose weight, but will pay for me to see a doctor at least 5 times a week and 21+ pills a month. I also just had my 7th surgery on my knee. I am going to continue to fight because it makes no sense. Just because I have state insurance and I am overweight does not mean I should get unfair treatment.

How has PatientsLikeMe (or other members of the PatientsLikeMe community) impacted how you cope with your condition?

Because of PatientsLikeMe, I have found a new desire to become a better patient and to be there for other people who are not aware that there is hope for their condition. I started on this site because I was tired of how I was being treated as a patient and I found hope on PatientsLikeMe and comfort with other members. It brought me out of my depression at the time. Any time I talk to someone, (and this was before I was on the Team of Advisors) I would tell them about this site because I felt it was just a great way to not feel alone anymore and to get knowledge. I’m able to cope better knowing that if I am having a bad day other people will be supportive and give well wishes or advice. That is so comforting when you are depressed…just knowing someone in this world cares.

What made you want to join the PatientsLikeMe Team of Advisors?

I wanted to help other people like others have helped me on this site.

 

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Member JoeSixPack shares his experience with diabetes

Posted January 3rd, 2017 by

Say hello to Peter (JoeSixPack), a father of three and member of the diabetes community. He was first diagnosed with type 2 diabetes in 1998 when he was 34 years old. In a recent interview, he told us about his life-long struggle with his weight, managing treatment, and how he found the motivation to lose weight and quit smoking.

Check out what he had to say about life with diabetic neuropathy and coming to terms with the realization that he’s not invincible.

Peter before and after his weightloss

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

I am a 62-year-old male that was married to the same lady for 40 years prior to her death in September 2013.  When I married my wife I weighed in at 335 pounds.  I was an executive with a financial company for the previous 12 years and eventually Peripheral Neuropathy had gotten so bad it finally put me off work in January 2015.  I was diagnosed Type 2 Diabetic in August of 1988 and struggled with my blood sugar levels for most of my adult life.  Like most 34-year-old men, I regarded myself invincible so prior to my diagnosis. I had taken life for granted and believed that I could continue along on a path to self-destruction until I took ill for about a year. No one seemed to be able to pinpoint exactly what the problem was.

When the diabetes chose to completely reveal itself it was in the way of uncontrollable thirst, numerous bathroom trips through the night and I was unable to get enough sleep through the night in order to properly function at work the next day. I was prescribed a drug for the time called Glyburide. It was because of the success of this drug that I went right back to my old habits of poor diet, lack of exercise and I was rapidly becoming a workaholic in a very high stress occupation.

After about 4 years on the drug and gaining another 15 pounds my illness broke through again and I was referred to an Endocrinologist for further direction. He changed up my Glyburide to a new drug called Metformin, sent me off to a Dietician. I was no stranger to dieting as I had been a fat guy my entire life. I joined Weight Watchers and promptly lost 75 pounds but by the time I met my wife I had reached a new high of 335 pounds. I knew I needed to lose some weight in order to stay active with the now 3 young kids in our life so I signed on to the Liquid Protein Diet. From August 1 that year until Nov 30 I was able to shed 130 pounds. It didn’t take me long to return to old habits and within 2 years I had regained the 130 pounds and was now tipping the scales around 360 pounds.

I was never really concerned about the diabetes and I went days where I would take my meds and other days I would not never realizing the damage that my obesity was doing.  I ate with reckless abandon, smoked 3 packs of cigarettes a day, and still I was taking my medication only when I was not feeling well and not as prescribed by my doctor. The more weight I put on the more meds I would be prescribed.  I went to see my family doctor and told him I was tired of taking pills.  He told me to go away and lose 60 pounds before he would even discuss a med change with me.  I left his office determined to do 2 things that year 1. Lose weight; and 2. Quit smoking.

So on July 31, 2000 I stopped cold turkey on the cigarettes changed up my diet and began to walk every day.  First day I went out my front door and I said to myself anyone can walk around the block. A block turned into 2 then 10 then a mile then 5+ miles daily.  The weight began falling off at a rapid pace and I felt so good I took myself of all my meds. I kept walking hoping my blood pressure would eventually respond. I was now down 108 pounds but found a lot of times I would have my walk cut short because of shortness of breath. As I lost more weight I was unable to complete any of my training. In November 2002 went under the knife for a triple bypass!  From 2002 until 2006 I worked out like a mad fool.

In 2006 I was promoted to the Regional Manager of the company I worked for and began ignoring my health in favor of my job.  I stopped going to the gym and stopped all forms of exercise and once again became a workaholic. I stayed around 330 pounds from 2007 until 2015 but I knew that the diabetes had taken a toll on my feet and hands as my feet were constantly burning.

I went in for a proper diagnosis and was told I had advanced Peripheral Neuropathy and was prescribed Lyrica to try and combat the nightly pain I was now feeling.  Seems the Lyrica was okay for the pain in my feet (100 mg 3 X’s daily) but now I began to notice the neuropathy in my hands and my doctor referred to this as focal neuropathy. In July of 2013 I noticed a tiny crack on the heel of my left foot.  This rapidly turned into a diabetic foot ulcer and I looked to the PatientsLikeMe forums to see how to go about healing this.

How would you describe living with diabetic neuropathy to someone who’s never heard of it?

Living with diabetic neuropathy is somewhat perplexing in the fact when it first shows up it comes as a small tingle in the foot and toes.  As it progresses it started to resemble gout but the more I treated my feet for gout the worse the feet became.  Eventually I made an appointment with a Diabetic Foot Nurse and she was able to detect peripheral neuropathy in both large toes and both small toes and I was sent to report this to my endocrinologist.  Slowly as the neuropathy progressed the tingling in the feet began to get worse and even more so at night when I was laying in a prone position.  Now that I have had the disease for almost 5 years I have nights the tingling and pain go as high as above the knees and it has also moved into my hands.

It has also caused the muscle mass in my hands to deteriorate and it has become very noticeable as my hands are looking like those of an 80-year-old.  My doctor increased my dose at bedtime to 150 mg of Lyrica and 3 Oxycocet along with .05 to 1 mg of Clonazepam as needed for sleep.  This prescription has been working to date but somewhere along the line I have developed a loud ringing in my left ear that seems to get louder as the drugs wear off in my system. Eventually the lack of the ability to get a good night’s sleep put me off work and I have been unable to work for the past 2 years as the disease consumes your life.  Things you may have taken for granted you are no longer able to do alone any longer.  You cannot put on your own shoes nor tie them up, cannot button up your shirt or zip your coat.  Very hard to check the temperature of water so you need assistance with the shower or bath (very easy to burn yourself). A lot of daily chores you used to do you can no longer do.  And because this is a disease of the central nervous system, I have no idea what the disease is doing on the inside of me.

In the forums, you talk about the importance of good nutrition and diet. How has this helped you manage your diabetes?

Recently I have taken on a LCHF Program Lifestyle change (Low Carbs High Fat) and in the past 10 months I have lost 111 pounds following this lifestyle and it has allowed me to get off all of my Diabetes medication (20 Units 2 x’s a day of Levemir, 3,000 mg of Metformin daily, 240 mg of Diamicron Gliclazide daily and 100 mg of Januvia daily). Unfortunately, I have been unable to shake the effects and symptoms of the Neuropathy but I have my fingers crossed that I may have stopped it in its tracks.  If that is the case I may have just added a few more years to the end of my life.

You’re super active in the forums – what’s it been like connecting with others on PLM? What does it mean to you to donate your data?

I was so excited when I found the website PLM as I was finally able to connect with other people that were either suffering for the same issue. It gave me hope that someone may have found out something about the diseases I have that would maybe help me live a better life living with both Type 2 Diabetes and Peripheral Neuropathy.  One thing I never did through all this is give up. I always believed the more like-minds discussed their common issues, the better the chance someone somewhere might just stumble across something that actually works.

I feel that the LCHF Program has done wonders for me and had I found this information out about 10 years sooner I believe I would never had met the disease called Peripheral Neuropathy.  So I try to stay as active as possible on the site providing information that people might otherwise not be able to find on their own.

I currently volunteer for the Canadian Diabetes Diabetic Foot Program and they will not even allow me to tell fellow Diabetics how I lost my weight and how it has helped me. They won’t allow me to even discuss my hands in the program presentation.  They feel that since my LCHF program is such a fringe program it is not likely to work for anyone else the way it has worked for me and I am sorry but I do not agree with them. Effective Nov 18, 2017 I will be resigning from that program as I feel modern medicine does not care if we get better or not. Doctors have little concern for us being able to stop a disease like Diabetes or Neuropathy and especially using a High Fat Diet.  If I can turn just one person with Diabetes onto this way of eating and it stops their Diabetes and never develops into a secondary disease such as Peripheral Neuropathy, I will have done wonders to help my fellow PLM participants.

 

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Member Susan shares about life with type 2 diabetes

Posted December 20th, 2016 by

Meet Susan (sugarpolicewoman) from Montgomery, Alabama. She loves birds, flowers and kittens and was diagnosed with type 2 diabetes over 40 years ago.

Check out her story to learn more about how she manages her condition while living in an assisted living facility.

Can you tell us a little about yourself? What are your passions?

I caught diabetes from my dad, who had diabetes, type 1.  I have type 2. I grew up in a Methodist preacher’s homes. We moved around an average of every four years, although my dad was a District Superintendent for six years once.  I had to switch schools quite a bit due to moving, therefore I never did develop close friendships, only casual acquaintances. We lived in several towns and cities in the state of South Carolina. When I was 14 years old, I caught chicken pox from my younger sister. The case was bad, probably because I had the pox later in life instead of during my younger years. When I had mumps, doctors still visited and treated sick people in the home. In front of me, my doctor told my mother I could have all the Coca-Cola I wanted. Unconsciously perhaps, that might have been the start of my diabetes.

I did not really discover diabetes until I was approximately 25 years old. Mercifully, I did not get sick during my college years. I have had my tonsils taken out, and also my spleen taken out because it was eating up my white blood vessels. I donated blood to the Red Cross one time, but that stopped when it was evident I had diabetes. I have loved books ever since they were read to me as a child, so quite naturally, I chose to be a librarian after college graduation where I majored in Library Science and minored in English. At first, I worked in a school library for one year, but working around teenagers just wasn’t for me. I worked a total of 40 years and 12 days as a federal employee in government libraries.

A favorite thing to do in junior high school and high school was reading books. One favorite time when I was a college student, I was playing softball during gym when my gym teacher had to play with us because there was not enough of us for 2 teams. I played left field, and caught her fly ball! I will never forget that! Now, during my “golden years,” I never seem to get enough time to be on my computer. I live in an assisted living facility, so the television is very welcome company! The computer is my main source for communication.

You were diagnosed over 40 years ago. Are there aspects of your condition that you still find challenging?

Diabetes can be a tricky disease. Management of my blood sugar levels has been very frustrating at times. Most the time, I know by hindsight what causes my sugar level to rise, but by then, my sugar has already risen. There is no easy way to manage blood sugar levels. You have to work hard. Other times, my sugar levels will bounce up and down like a yoyo. Once or twice, my sugar dropped low enough that I wound up in the emergency room. When the sugar level gets too low, you pass out. I was trying the wrong way to regulate my blood sugar level. The most recent challenge has been my fatigue. I feel really tired to the point that I just sit and watch television instead of doing my main daily job of putting clean clothes away. The fatigue is caused by high blood sugar. I recently discovered my dry mouth is also a symptom of high blood sugar. Thank goodness, I can solve this by drinking some cold ice water! Thinking about my husband’s declining health contributes and just adds to all the challenges.

In the forums you talk about managing your sugar in an assisted living facility where you have a restricted choice of food. Do you have any advice for others who might be in a similar situation?

The assisted living facility where I live has 24 residents in my building. There are four buildings or cottages on the campus. Meals are cooked and served to us in the dining room inside my cottage.  Meals are where the main challenge of managing my blood sugar levels becomes hard. I have very little choice of what to eat. We residents must choose if some of the foods on our plates are not diabetes friendly. Sometimes I have no choice but to eat pasta, bread, white rice or white potatoes if the menu is limited to very few items. My advice to other PatientsLikeMe members would be to do what I am trying to do. I try not to eat what I can do without. For example, if I can skip it, I avoid eating white rice or white potatoes because when these two foods get inside the body, they turn into sugar. Sugar is the diabetic’s enemy. Of course, I’d be forced to eat white rice if the cook mixes the rice with something else and creates a casserole for either lunch or dinner.

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

When I post descriptive sentences about my condition or test results, this reminds me I must do something to improve the status of my condition. PatientsLikeMe helps me treat myself! If by donating this information about myself helps someone else, that would be wonderful!

 

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“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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Patients as Partners: Christel on “finding your tribe”

Posted August 4th, 2016 by

Today, we’re sharing the final piece of the Patients as Partners series from Christel, who’s living with type 1 diabetes. Christel has relied on several of the Partnership Principles including respect, communication, and shared responsibility throughout her journey. Below, see what she says about connecting with others who know what she’s going through and discovering the “life-changing benefits of partnering with peers.”

Whether you are newly diagnosed or a veteran in your health condition, there are always opportunities to learn, share, and create a group of trusted peers who become your tribe. Despite a diagnosis of type 1 diabetes over 30 years ago, it wasn’t until I recently “found” my tribe that I truly understood the life-changing positive benefits of partnering with peers — those who travel along a similar healthcare journey. How did I find my tribe? I created it, using many of the Partnership Principles.

Know Your Needs

In a quest to better understand diabetes and how to manage it, I attended conferences and meetings where experts would stand up and discuss research and treatment plans. These sessions were helpful, but what shocked me was where I truly learned to understand daily life with my disease: my peers, during rapid-fire discussions in hallways or sitting around a lunch table. We began to talk beyond the medical management and focused on how to “live” with diabetes.

I realized that there was something missing that was needed in our community: a patient-led psychosocial idea exchange where we could share our fears, frustrations, and tips in a safe, protective environment where no one felt judged or criticized. The Diabetes UnConference was born.

Share Responsibility

I couldn’t do this alone. I asked for help from a group of people impacted by diabetes who I trusted: my peers. Those whose wisdom I sought out and those I admired for their ability to be honest and supportive became the facilitators for sessions discussing intimacy issues and burnout. They helped others share their secrets by creating a sacred space where social media was not allowed to penetrate. Our peers are our experts and by acting as partners, we have the opportunity to switch roles during discussion.

Christel and peers at the Diabetes UnConference

 

Respect Each Partner

Part of our commitment to each other during the conference is to check in frequently with these questions: “Do you feel welcomed? Do you feel valued? Do you feel respected?” Many of the conversations that occur during sessions are deeply personal and even if we have different attitudes or treatment plans, the overarching goal is to learn from each other. We have had attendees diagnosed in the past six months sitting next to peers diagnosed over 50 years ago — and each said they had learned something new and were able to find a connection, because they vowed to respect their individual experiences.

Listen and Communicate

I value the communication between my peers during The Diabetes UnConference, because in listening to others and being able to openly share my experiences, I have learned new ways to manage daily life with diabetes. While I may not utilize a particular treatment, learning about it from my peers is crucial, because I never know who I might meet in the future who is interested in that particular issue. Connecting and communicating with others widens my partnership with my peers through listening. Many of our attendees say that because of what they learned at The Diabetes UnConference, they have made positive changes to their daily management and have achieved measurable positive outcomes. I’m one of those peers.

Evolve and Accept Growth

In addition, by listening to the feedback my peers gave me from the first conference, we have evolved. One attendee said that they wished those who love us — spouses, significant others, parents, children — were able to have the same type of psychosocial support and safe, non-judgmental environment. Many other peers agreed, and the next year, we created that space for a new group of peers: PLUs (People who Love Us). Partnering with my peers allowed us to grow and welcome more partnerships that didn’t exist before.

Reflect, Evaluate, and Reprioritize

As The Diabetes UnConference matures, I have found my tribe and helped to grow partnerships that have turned peers into trusted confidants and friends. Many attendees check in with each other on a regular basis, despite living across the country. My peers and I are looking to expand ways to have those trusted face-to-face conversations in a safe environment to others who can’t attend a conference due to location or financial constraints. We are looking for what’s missing and finding ways to fill that gap.

My experience with founding The Diabetes UnConference has me wondering how many other health conditions could benefit from this type of psychosocial idea exchange and how others could partner with their peers. Using these Partnership Principles offered up by the PatientsLikeMe Team of Advisors is a great place to begin.

 

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Christel’s story

Posted December 10th, 2015 by

Last month, we introduced Christel, a member of your 2015-2016 Team of Advisors living with type 1 diabetes. Here she talks about the important role peer support has played in her journey.

Here’s her story:

 
You can see how much good data can do. During the month of December, we’re celebrating #24DaysofGiving. Any data you share on the site will go toward a donation of up to $20,000 by PatientsLikeMe to Make-A-Wish Massachusetts and Rhode Island to help fund life-affirming wishes for seriously ill children.

 

 

Data for you. For others. For good.

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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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#ChatActChange: empowered to chat, act and make change – together

Posted November 17th, 2015 by

On October 28, Sally Okun, our Vice President for Advocacy, Policy and Patient Safety, participated in a Twitter chat – using the hashtag #ChatActChange – aimed at empowering people living with chronic conditions to advocate for policy change. Hosted by Diabetes Social Media Advocacy (DSMA), other chat participants included policy expert Susan Dentzer, Diabetes Hands Foundation and Novo Nordisk.

The chat generated some great conversation about what it means to be an empowered patient. 186 people joined the discussion, including patients, diabetes influencers and policy experts. 2015-2016 Team of Advisors member Christel, who is living with type 1 diabetes, took part in the chat, as did the American Diabetes Association.   

More than 500 users were reached with the #ChatActChange hashtag, and there were more than 1,154 tweets during the one-hour Twitter chat.

To check out a complete summary of the chat, take a look at this Storify. You can also contribute to the ongoing conversation on Twitter using #ChatActChange.

Let’s be empowered to chat, act and make change – together.

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World Diabetes Day: Act today to change tomorrow

Posted November 14th, 2015 by

Diabetes affects almost 400 million adults[1] around the world and contributes to nearly 5 million annual deaths[2]. November is American Diabetes Month, but on November 14, the entire world joins together to unite their voices against this disease on World Diabetes Day (WDD).

It was started back in 1991 by the International Diabetes Federation (IDF). And today, WWD is the world’s largest diabetes awareness campaign reaching a global audience of over 1 billion people in more than 160 countries. The campaign draws attention to relevant issues within the diabetes community and this year’s theme is “act today to change tomorrow,” with a focus on healthy eating habits and the importance of access to healthy, affordable food in reducing the global burden of the disease.

There are many ways to get involved – and stay involved year round – listed on the WDD site. How are you showing your support for those touched by diabetes this November, or in the months ahead? Share your awareness efforts and experience with diabetes in the PatientsLikeMe forum and connect with the almost 2,500 PatientsLikeMe members living with type 1 diabetes and nearly 18,000 members living with type 2 diabetes.

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The American College of Cardiology and PatientsLikeMe to Bring Patient Focus to Diabetes Research and Care

Posted November 9th, 2015 by

Real-world, clinical insights and patient engagement central to improving health outcomes 

WASHINGTON and CAMBRIDGE, MASS., November 9, 2015—The American College of Cardiology (ACC) and PatientsLikeMe have launched a partnership to explore innovative ways to make real-world patient feedback and experience more central to diabetes research and care. Focused on the ACC’s Diabetes Collaborative Registry®, the partnership will encourage people living with diabetes to offer perspectives to enhance and accelerate the registry’s research and development agenda. The announcement was made during American Diabetes Month and at the start of the week marking the International Diabetes Federation’s World Diabetes Day.

The Diabetes Collaborative Registry is the first global, cross-specialty clinical diabetes registry designed to track and improve the quality of diabetes and cardiometabolic care delivered to patients across the primary and specialty care continuum. The registry’s founding industry sponsor, AstraZeneca, is also a PatientsLikeMe partner and shares the goal to bring the patient voice into the center of scientific discovery and development.

ACC Executive Vice President of Science, Education, Quality and Publishing William J. Oetgen, MD, MBA, FACC, FACP said the collaboration will bring PatientsLikeMe’s expertise and engagement experience to the registry. “The Diabetes Collaborative Registry is focused on transforming the quality of clinical care, prevention and treatment and driving improvements in quality of life and outcomes for people around the world. We want to ensure that patients and providers get the most from the registry and from access to their health data. Our partnership with PatientsLikeMe makes the patient voice central to science, and will enable us to explore ways to effectively engage patients and work with them to define potential opportunities to enhance the registry’s impact,” Oetgen said.

The collaboration’s first step calls for the ACC and PatientsLikeMe to reach out to people living with diabetes to identify priorities for the registry’s research and program development agenda. Practices participating in the Diabetes Collaborative Registry will be able to offer their patients access to the PatientsLikeMe website so they can become part of the online patient community, which is open to any patient living with diabetes. Nearly 20,000 people already use the website to connect in forums and to track and share their experiences living with diabetes, including reporting the severity of symptoms such as fatigue, pain and depressed mood, quality of life, and the effectiveness of various treatments or non-drug interventions.

As part of the collaboration, Sally Okun, Vice President of Patient Advocacy, Policy and Safety at PatientsLikeMe, will hold a position on the Diabetes Collaborative Registry Stakeholder Advisory Panel, which provides guidance and recommendations to the registry’s member governance committees. Okun said the collaboration has the potential to reach millions of patients given 1 in 3 Americans is expected to develop diabetes during their lifetime. “We’re excited to be partnering with the ACC given their deep experience with registries and unparalleled partner support. We expect that patient-generated data and data from clinical encounters will help create a vision of health for all people living with diabetes—a vision focused on improving outcomes that matter most to patients.”

PatientsLikeMe welcomes anyone living with type 1 or type 2 diabetes to join patientslikeme.com for free at www.patientslikeme.com.

About Diabetes
Nearly 30 million children and adults in the United States have diabetes, and 2 out of 3 people with diabetes die from heart attacks or stroke. Type 1 diabetes mellitus, usually diagnosed in children and young adults, can occur at any age when the pancreas does not produce insulin, a hormone needed to control the body’s blood sugar levels. It requires daily monitoring of blood glucose (sugar), insulin therapy, diet modification and exercise. Type 2 diabetes mellitus is characterized by insulin resistance or desensitization and increased blood glucose levels. It is a chronic disease that can develop gradually over time and can be linked to both environmental factors and heredity.

The Diabetes Collaborative Registry® is the first, real-world, interdisciplinary, quality improvement-driven, clinical data registry aimed at tracking and improving the quality of diabetes and cardiometabolic care across the primary and specialty care continuum. Led by the American College of Cardiology, in partnership with the American Diabetes Association, the American College of Physicians, the American Association of Clinical Endocrinologists and the Joslin Diabetes Center, the Diabetes Collaborative Registry is a big data collaboration that allows for a longitudinal study of diabetes across all stages of the disease—including presentation, progression, management and outcomes—even as patients receive treatment from multidisciplinary care teams. The mission of the Diabetes Collaborative Registry is to generate data-driven, evidence-based insights and solutions that will transform the future of personalized, high quality care and outcomes for people across the globe. The registry is sponsored by AstraZeneca and Boehringer Ingelheim Pharmaceuticals, Inc. For more information, visit TheDiabetesRegistry.org.

The American College of Cardiology is a 49,000-member medical society that serves as the professional home for the entire cardiovascular care team. The mission of the College is to transform cardiovascular care and to improve heart health. The ACC leads in the formation of health policy, clinical standards and practice guidelines. The College operates national registries to measure and improve care. It also provides professional medical education, disseminates cardiovascular research and bestows credentials upon cardiovascular specialists who meet stringent qualifications. For more information, visit acc.org.

PatientsLikeMe is a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers, and nonprofits develop more effective products, services and care. With more than 350,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 60 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

Contact
Margot Carlson Delogne
PatientsLikeMe
mcdelogne@patientslikeme.com
781.492.1039


Throwback Thursday: Diabetes and stress

Posted August 27th, 2015 by

Just about two years ago, nearly 600 members of the PatientsLikeMe community completed a survey called the Diabetes Distress Scale (DDS), a 17-item questionnaire which measures the amount and types of problems diabetes can cause in a person’s life. And today, we’re throwing it back to the summary of the results. Here’s what Dr. William Polonsky, the Founder and President of the Behavioral Diabetes Institute, and the co-creator of the DDS, had to say at the time about diabetes and stress:

“I believe it’s important to understand the physical, behavioral and emotional sides of illness. Diabetes, in particular, is so highly dependent on what people do every day.  It is, therefore, almost all about behavior− how do you talk yourself into taking on new tasks and making changes in your lifestyle, some of them which may seem not so pleasant or worthwhile, that you’d rather not do.”

You might recognize Dr. Polonsky from his subsequent blog podcast and additional research with the WHYSTOP scale. You can view the results of the DDS as a PDF, but check out some of the graphs below.

 

Have you had an A1C test done in the past year?

If you’re living with type 1 diabetes or type 2 diabetes, find others just like you in the growing communities on PatientsLikeMe. Almost 20,000 people with type 1 or type 2 are sharing their experiences to help others, for good.

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Food for Thought: July (chocolate) edition, take 2

Posted July 7th, 2015 by

Last year, July’s Food for Thought revolved around MS members sharing their experiences with chocolate. This year, we thought we’d continue the tradition – check out what a few members had to say about their relationships with the delicious sweet:

“I have been trying a dairy free diet for a couple of months due to me having a problem with milk protein which is an antigen to the lungs and acts like any other substance that can affect our breathing. I have a treat of dark chocolate now and again and have been grateful for a plentiful supply of dairy free products.”
-IPF member

“For me, I don’t deny myself a little sweet treat.  What I do deny myself is massive amounts of sweet treats. I buy a few high quality dark chocolates and allow myself one per day. Or I buy the sugar free mousse packs in the refrigerator section or the sugar free Jell-O puddings. They seem to work. I also make my own brownies and cookies using high fiber ingredients and sugar substitutes. I have been using Xylitol with good success too.”
-Diabetes member

“I will take a teaspoon or two of coconut oil (organic, extra virgin) and add to it a bit of cocoa powder and a drop or two of Stevia to sweeten.  It tastes like real chocolate. The coconut oil is firm and melts in your mouth just like real chocolate…I can hardly tell the difference.”
-Diabetes member

If you missed our other Food for Thought posts, read the previous editions here.

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“Focus on making small but meaningful changes” – an interview with Amy Campbell

Posted March 25th, 2015 by

Amy Campbell is a registered dietitian nutritionist and certified diabetes educator at Good Measures, a company that combines the expertise of dietitians with state-of-the-art technology to help people improve their eating and exercise habits. Before joining Good Measures, Amy worked for almost 20 years at Joslin Diabetes Center, an internationally recognized diabetes treatment, research and education institution.

Amy, you have an impressive background – former nutritionist at Joslin Diabetes Center and co-author of 16 Myths of a Diabetic Diet, just for starters. As a certified diabetes educator, you’re aware of the media buzz around the new cholesterol guidelines. What does this mean for people with type 2 diabetes – and those at risk for it?

Cholesterol guidelines have always been somewhat confusing. The Dietary Guidelines Advisory Committee, an expert panel that provides recommendations to the Department of Health and Human Services and the Department of Agriculture, has done their homework and really examined the evidence around dietary cholesterol. The good news is that, for the first time, the committee is really downplaying the role of dietary cholesterol. In other words, for most of the population, eating foods that contain cholesterol has little if any effect on blood cholesterol levels. This is great news!

Whether or not eating eggs affects our cholesterol levels is awfully fuzzy for many people. As both a dietitian and a health professional advisor for the Egg Nutrition Center, this probably comes up a lot. What’s the latest wisdom?

For many years, health professionals, including doctors and dietitians, advised their patients to limit or even avoid eggs due to their cholesterol content. But a number of important studies have shown that dietary cholesterol (cholesterol found in food) has little effect on blood cholesterol levels. In fact, the Dietary Guidelines Advisory Committee have dropped their recommendation that Americans limit their intake of cholesterol from foods, such as eggs and shrimp.

The data is a little less clear in terms of how dietary cholesterol might affect people who have type 2. But again, there’s no need to cut eggs out of a diabetes eating plan. In fact, if anything, eggs are a great addition because they are carbohydrate-free, rich in protein and low in saturated fat. Eggs provide many other important nutrients, as well, such as iron and vitamin D. Plus, they’re budget-friendly nutrients, as well.

Any specific suggestions for foods to eat or avoid if you want to reduce the level of “bad” (or lousy or LDL) cholesterol?

Although there’s some controversy surrounding saturated fat and how “evil” it really is, studies do show that this type of fat, found in red meat, cheese, whole milk and butter, for example, can raise LDL cholesterol levels. However, there are foods that can lower LDL cholesterol. These include foods high in soluble fiber, such as oatmeal, oat bran, beans, apples and pears. And foods rich in omega-3 fatty acids, like salmon, tuna, sardines, walnuts and flax seed can lower LDL levels as well.

Type 2 diabetes seems to be one of those conditions that’s closely related to lifestyle. Along with tips on nutrition, what else do your readers want in helping to manage their diabetes?

I’ve found that people who have type 2 diabetes want simple but straightforward suggestions on what they can do to live a healthy life with diabetes. Making changes to one’s eating plan can be difficult (we form our eating habits early on!), so practical pointers around food shopping, making nutritious meals and controlling portions are always helpful.

In addition, because getting and staying physically active is so important for people with diabetes, guidelines on how to fit activity into one’s daily life (like walking on your lunch break, for example, or using a resistance band while watching TV) are invaluable. Dealing with a chronic condition day in and day out can be stressful. Finding ways to reduce stress and to take time to relax is important. Finally, information is power. I encourage people who have diabetes to check their blood sugar levels – if not every day, at least a few times per week – to get a better understanding of how their food, activity and medications affect their diabetes control.

What about sleep? Have patients indicated that the condition seems to be associated with insomnia or sleep apnea?

Sleep is a big issue when it comes to diabetes. First, poorly controlled diabetes can keep a person from getting a good night’s sleep, especially if they’re getting up frequently to use the bathroom or get something to drink. Second, having type 2 diabetes increases the risk for sleep apnea, a serious condition whereby a person stops breathing for short periods of time while sleeping. And third, complications from diabetes, such as neuropathy, can also prevent a person from getting restful sleep.

Restless leg syndrome is another condition that interferes with sleep, and this condition is more common in people who have diabetes than in people who don’t. A lack of sleep can increase the risk of heart disease, obesity and even type 2 diabetes. Sleep deprivation can also do a number on your immune system, meaning that you’re more likely to get sick. Sleep experts recommend aiming for about 7 to 9 hours of sleep a night.

So, if you could come up with three top bits of advice for people who live with – or want to avoid – type 2 diabetes, what would they be?

Here’s my advice: First, focus on making small but meaningful changes to your eating plan (if you need to!). You don’t need to cut out carbs or go on some stringent diet. But aim to eat plenty of “whole” foods, including vegetables, fruits, whole grains and lean protein foods. Limit processed and fast food as much as possible.

Second, be active. If going to the gym isn’t for you, no worries. Go walking. Climb stairs. March in place when you watch television or talk on the phone. Physical activity is so important to help with blood sugar control. And third, take care of yourself. This means getting enough (but not too much) sleep, managing stress and making sure you have support from family, friends, co-workers or even an online community.

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