January 12th, 2010 by KerriSparling in Better Health Network, Medblogger Shout Outs, Opinion, Patient Interviews
Tags: Bloggers, Blogging, Diabetes, ePatients, Exploitation, FTC, Harrassment, Industry, Influence, Patient Bloggers, PR, PR Professionals, Press Releases, Social Media
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Quick post to the PR professionals in the healthcare sphere:
When someone dies, it is terrible tragedy. That person leaves behind a family, loved ones, and – especially when they die young – their future. If someone dies as a result of diabetes, or due to complications from diabetes, or from something else entirely but they happened to have diabetes, and you decide to exploit their death to gain pageviews for your website? (See also: Brittany Murphy, Casey Johnson)
Come on.
There’s a difference between passing on information that could help people improve their lives, and then there’s pure, TMZ-style exploitation. Read more »
*This blog post was originally published at Six Until Me.*
December 19th, 2009 by DrCharles in Better Health Network, Patient Interviews
Tags: Fiction, Hypochondria, Hypochondriasis, Internal Medicine, Psychiatry, Psychology
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It’s morning, and in the shower he reaches a trembling hand up towards his face and strokes his jugular lymph node chain, searching for any indications that the small lumps palpable within might have gotten larger. He feels the same familiar bumps, rolls them like jelly beans inside a package, and wonders if at least one lymph node is rotting with cancer.
As he dresses for work he follows the sinews of his neck down to his thyroid gland, a bowtie beneath his skin. The right side is larger than the left, and this asymmetry surely indicates a malignancy. He’s read that thyroid cancers are actually quite curable, unless he has one of the rare kinds, which he almost certainly does. Three years to go before death, full of surgeries and chemo, if he’s lucky. Read more »
*This blog post was originally published at The Examining Room of Dr. Charles*
December 11th, 2009 by PhilBaumannRN in Better Health Network, Interviews, Patient Interviews
Tags: Dave deBronkart, ePatient, ePatients, Medicine, Participatory Medicine, Social Media
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Dave deBronkart is a Freedom Fighter. In 2007, Dave battled metastatic cancer and emerged a passionate advocate for leveraging the Web to connect patients with the content and support and inspiration they need to cope with the human consequences of disease.
The Web has brought forth new ways of connecting the world and brings with it questions and answers about how to safely and effectively extend the power of health care from face-to-face meetings to remote but important regions of human experience. It’s important for us to understand the integrative nature of health care: no single perspective will yield approaches that work. Rather, we will need the perspective of all participants. Read more »
July 25th, 2009 by KerriSparling in Better Health Network, Patient Interviews
Tags: Cure, Diabetes, Joe Solowiejczyk, Johnson & Johnson, Living With, Type 1 Diabetes
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“Friends for Life … this conference is delicious. It’s like the Woodstock of diabetes,” he said, pacing around the room and smiling warmly.
Meet Joe Solowiejczyk.
According to his bio on the CWD website, “He [Solowiejczyk] currently works for LifeScan, as Manager of Diabetes Counseling & Training and is a faculty member of the Johnson & Johnson Diabetes Institute. Joe is healthcare professional who has lived with Type 1 diabetes for over 47 years, Mr. Solowiejczyk has been able to translate his personal experience into patient care.”
To my untrained eye, Joe is the “guy who gets it.” He’s a diabetes nurse educator, and a person with diabetes himself. If he was a member of my personal medical team, he’d be the one I take most seriously because when I say, “It sucks,” he could respond, truthfully, with “I know.”
Joe hosted a session at Children With Diabetes called “It’s Not Just a Numbers Game.” This grabbed my attention because I write constantly about how an A1C is only one part of diabetes management. There’s all this emotional and mental stuff that comes into play.
“Ask me if I like it,” Joe said to the group of us. He paused for a second. “I hate it.”
I was sitting at a table with a bunch of CWD parents (including Bennet and Michelle) and I heard them all chuckle, but I just nodded in agreement. Empowerment is being able to say that diabetes is hard and that it sucks sometimes, but still forging ahead and working towards better health. I was glad to hear Joe telling this group of parents (and adults diabetics) that diabetes doesn’t have to be something we like. We can hate it, openly, and still remain positive.
“I schedule my diabetes depression days,” he said. “I plan them and then I tell everyone I know to call me every hour and tell me how courageous I am.” He laughed. “After about an hour, I’m sick of it and I just want to move on with my day.”
I like Joe. I like listening to him talk and I respect him for managing diabetes for over 47 years. I respect him for saying, “It took years for me to be able to say, ‘I’m having a hard time with diabetes,’ without it being a chip on my integrity.” This statement resonated for me because I think people want to read blogs about diabetes and find a lot of upbeat moments and happiness. But the truth of life is that there is an emotional gamut to be run and we have the right to run it, diabetes or no diabetes.
“You can not like it and still do it. Hating it [diabetes] and doing it are not mutually exclusive states.”
He talked about the daily duties of a person with diabetes, from waking up in the morning and testing to all of the bits and pieces of precision management that are required along the way. The possibility of a cure was mentioned. And while many diabetics say “I’ll eat the contents of an entire Crumb’s Bakery,” or “I’ll drink orange juice FOR FUN,” Joe smiled gently.
“If there’s a cure? What will I do? I’ll sit on a park bench for three weeks and stare at the sky and do nothing.”
It’ll be 23 years for me this September.
I’d love to sit on a park bench and count clouds for a while.
*This blog post was originally published at Six Until Me.*
July 8th, 2009 by KerriSparling in Better Health Network, Patient Interviews, True Stories
Tags: Diabetes, Diagnosis, Endocrinology, Family Medicine, Fear Of Needles, insulin, Internal Medicine, Pancreas, Type 1 Diabetes
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After a hectic week with the conference in Philly and then Chris’s great news, I need to spend some time today catching up on everything. Thankfully, Jessica Phillips has offered to guest post today, writing about marking 500 days with type 1 diabetes. She’s come a long way, and I’m proud to host her words here on SUM.
Heeeeeeere’s Jessica!
* * *
As I was injecting myself with insulin on a lunch break at work, a co-worker walked by and exclaimed, “I could
never do that! EW! I hate needles!” Less than two years ago I might have agreed. I never had a strong phobia of needles, but that is not to say that I particularly liked them either. I was known in my childhood to run out of doctor’s offices into the parking lot at the first mention of “shot”. Now when I hear such a strong and callous remark to my now normal routine of insulin injections, I struggle with trying not to angrily reply, “Well you would have to give yourself shots if you had to in order to live!” or, “How do you think I feel? You think I want to do this?” I’ve learned as of late to simply smile and say, “It’s not easy.”
Reactions like this are commonplace for those of you who have experienced Type One Diabetes for many years, and even some for the majority of your life. For me, June 9th, 2009 marked my 500th day with type 1 diabetes. I was diagnosed in my hometown of San Diego, California on January 25th, 2008 at 26 years-old. For a couple months prior to diagnosis I had been experiencing the typical signs of hyperglycemia and a failing pancreas as I was constantly dehydrated, urinating, and tired. Being a college student and in a constant state of stress, I quickly attributed the majority of my symptoms, from dizziness to infections, to be solely related to my immune system’s battle with my constant stress. After many weeks of procrastinating, I finally urged my doctor to order a blood test. I went in to the lab on January 23rd and was called by my doctor 24 hours later while I was driving to school. The tone in her voice immediately caught my attention and set me in a state of alarm. She informed me that my blood sugar the day before was above 300 mg/dL and I was to avoid sugar and be referred to an endocrinologist immediately.
Luckily I was able to see an experienced endocrinologist the next day, and he diagnosed me with type 1 within minutes of being seated in the exam room. I was in complete shock, and felt confused, angry, and overwhelmingly sad all at the same time. I felt a struggle between trying to remain alert to the bombardment of information he was feeding me, and trying desperately not to cry. The doctor left the room to retrieve my new meter and insulin pens, and I lost it. Luckily I had some moral support with me, but I have never felt so alone and lost. I kept thinking, “how did this happen?” and, “what did I do wrong?” To have gone many years without having anything major occur medically, not even a broken bone, it was a major shock to hear I had something irreversibly wrong with me. I not only had something wrong, but I could not do anything to change it.
The next few days were extremely challenging to say the least. I was unable to give myself insulin and had to have someone else do it for me for the first couple days. I would sit and look at the needle and could not conceive of how this tiny piece of metal was going to go through my skin. I just kept thinking it was so wrong, and foreign. I also cried. A lot. And I researched online and in books so much that I felt as though I could speak at a lecture on the biology of diabetes. I found the knowledge empowering, and the more I grasped what my body was actually doing, and not doing, I became more confident in my ability to control my state.
Now, 500 days later, this diabetic routine is normal to me. I can hardly even remember a time when diabetes wasn’t on my mind. The memories have faded of when my blood sugar was not a concern, and when I was able to look at food as just food. The last year and a half has been a giant emotional roller coaster, full of ups and downs, but they have changed me. Sometimes I get the look of sympathy from others when I detail my hardships with this disease, anywhere from medical costs to just the simple annoyance of pricking myself all the time, and I have found myself realizing that although I would not choose to have this disease, I consider myself lucky. I am lucky of course to not have something worse, but having gone through this change has made me look at my life through a new and clearer lens. My bottom-line now is a cliché idea, but it is so true … life is short, and you only get one shot, so make it worth it, no matter what.
* * *
Thanks for sharing your story, Jessica. (And for the record, Jessica is the one with the fantastic hair on the right in that photo. Also for the record, I just realized that today is my 8,209th day with diabetes. Holy crap, my pancreas is lazy.)
*This blog post was originally published at Six Until Me.*
