“It’s my OCD.” I hear that on and off from friends and patients who half-jokingly use the term to describe overly careful behavior (such as double-checking to make sure the stove is off) but don’t actually have obsessive-compulsive disorder. True OCD can be a devastating disease. Patients have intrusive, uncontrollable thoughts and severe anxiety centered around the need to perform repetitive rituals. They can be physical such as hand washing or mental such as counting. The behavior significantly interferes with normal daily activities and persists despite most patients being painfully aware that the obsessions or compulsions are not reasonable.
OCD affects 2-3 percent of the world’s population. We’ve seen characters with the disorder portrayed in television (e.g., Tony Shalhoub’s Adrian Monk) and in film (e.g., Jack Nicholson’s Melvin Udall in “As Good As It Gets.”) Yet it’s still associated with stigma, shame, and an alarming level of ignorance by many health professionals. On average, people look for help for more than nine years and visit three to four doctors before receiving the proper diagnosis. In an excellent review article on the subject, Dr. Michael A. Jenike, offers three helpful screening questions: “Do you have repetitive thoughts that make you anxious and that you cannot get rid of regardless of how hard you try?” “Do you keep things extremely clean or wash your hands frequently?” And “Do you check things to excess?” He suggests that answering “yes” to any of these questions should prompt an evaluation for possible OCD. Of course, these are just screening questions and keeping a spotless kitchen doesn’t mean you have a disorder.
For this week’s CBS Doc Dot Com, I interviewed Jeff Bell, KCBS radio broadcaster and author of Rewind, Replay, Repeat: A Memoir of Obsessive Compulsive Disorder and When In Doubt, Make Belief: Life Lessons from OCD. He poignantly told me about the mental anguish associated with his illness, how it threatened to sabotage his career and personal life. His OCD focused on a fear of unintentionally harming others. He found himself unable to drive a car because every time he hit a bump he was afraid he had run somebody over; each time, he needed to get out and check. Even walking to work presented a challenge. He explained that a twig on the sidewalk could stop him in his tracks and fill him with what he knew were irrational thoughts but was powerless to control. Maybe somebody would be harmed by the twig if he didn’t move it. But if he did move it then maybe somebody would be harmed who wouldn’t have if he had just left it alone.
Jeff Bell sought treatment and turned his life around. His message is that others can do the same. Highly successful approaches including cognitive-behavioral therapies and medication can help the majority of patients. But only those who ask for help.
Resources for OCD include: The Obsessive Compulsive Foundation, The Association for Behavioral and Cognitive Therapies, and The New England Journal of Medicine.
Even though I do not like the disease, there are some diabetes-related simple pleasures that make me smile:
I like when I change the battery and the insulin reservoir at the same time. Having my Medtronic 522 “full” on both sides makes me happy.
I like when the carb count on something is exactly 10 grams of carbs because it matches my insulin to carb ration precisely. One snack, one unit, one oddly happy Kerri.
I like the sound of the pump counting up a bolus. Boop boopbeep!
I like when the sound of the bolus is caught by Chris and he ends up whistling it back to me, almost without thinking. It’s a little soundtrack snippet of our life.
I like when the cats wait patiently for me to remove the pump tubing from my body before they lunge for it.
I like when new boxes of diabetes supplies show up and I can organize them in my little OCD supply closet.
I like when the number on my meter is two digits, but higher than 89 mg/dl. It’s a tight range, I’m not usually in it, but it brings me weird joy.
I like when the Dexcom beeps and my coworker (who works a wall away from me) IMs me quietly to check, “Low?” because she’s ready to get juice if necessary.
I like not having to wear a watch.
I like when I get to dump all the used test strips that have piled up throughout the day. Knowing I’ve tested a bunch makes me feel like I really stayed tuned in.
Thanks to KevinMD for highlighting an interesting discussion about the ethics of disclosing another physician’s error. It reminded me of a case I witnessed many years ago.
A young man had been in a car accident and was transferred to the rehab unit after several orthopedic surgeries and a long inpatient stay. Prior to beginning physical therapy, he was sent for doppler ultrasounds of his deep leg veins to make sure that he didn’t have a thrombus (clot) that might break off and lodge in his lungs during exercise. The ultrasound was actually positive for a large DVT. Unfortunately, the radiology note listed all the large veins that were patent (had no clots) first, and then finished with a notation of (+) DVT in one of the veins. The patient was transferred back upstairs to the rehab unit, the physical therapist glanced at the radiology report (where the first several sentences indicated normal findings) and took the patient to group therapy.
The patient got up out of his wheelchair, stood for a few seconds, and immediately collapsed. His DVT broke off and traveled to his lungs, causing a massive occlusion of his vessels. The crash cart arrived as he coded, the vascular surgery team quickly took him to the OR to crack his chest and try to remove the clot, but he didn’t make it. It was shocking and terrible.
What happened afterwards was memorable. The rehabilitation medicine attending notified the family of the error, explained exactly what happened and apologized with tears. The hospital administration was notified, the physical therapist, radiologist, residents, and attending physicians got together for a meeting in which a new reporting protocol for positive doppler findings was created. To my knowledge, there has not been another case of pulmonary embolism on that rehab unit since.
The family members did not sue. They were deeply grieved, but grateful for the transparency. The dangers of DVTs were indellibly burned into the minds of all physicians and staff working in the rehabilitation unit – and I believe that our lifelong vigilance may save many other patients from a similar fate.
Kerri Morrone-Sparling is a whirlwind of energy. Not only is she the founder of one of the first diabetes blogs on the Internet: SixUntilMe, but she has devoted her career to helping others with diabetes. She works full time at dLife.com, a delightful and practical diabetes website and community. Kerri recently offered me some Halloween survival tips for people with diabetes, and today I had the chance to interview her about her life, her work, and the meaning of World Diabetes Day.
I’ve summarized some of our talking points below for those who don’t wish to listen to the dulcet tones of two very friendly ladies dishing about diabetes.
Dr. Val: Tell me a little bit about your blog.
Kerri: My blog is called SixUntilMe and I started it in May of 2005. I was looking for other people like me who were living with diabetes and since I couldn’t find a community like that I decided to start one myself. As it turns out I wasn’t the only one – there were 2 or 3 other diabetes bloggers out there at the time, and now there are more than 250 of us.
Dr. Val: What does “six until me” mean?
Kerri: My diabetes started when I was six years old – I had a viral illness on my birthday which probably triggered an autoimmune response, causing the disease. My blog is about my diabetes – which started when I was six and is ongoing until now. So I called it “sixuntilme.”
Dr. Val: How are you involved in diabetes advocacy?
Kerri: I work for a diabetes media company, (dLife in Westport, Connecticut) so my entire day is built around reaching out to people with diabetes, trying to make a difference in their life, and connecting them with up-to-date health information. Since I grew up without knowing any other kids who had diabetes, this job is like the holy land. I mean, this whole company was built to help people like me.
Dr. Val: What are some of the worst diabetes myths and what do you have to say about them?
Kerri: First of all, most people don’t know the difference between type 1 and type 2 diabetes, and to make matters worse, they believe that people “give themselves diabetes” by eating too much sugar. So they make it seem like it’s all our fault. Secondly, people often believe that insulin is the cure for diabetes. They don’t realize that a glucose meter, an insulin pump, or a continuous glucose monitor are just technology, not a cure. Sometimes people think there’s no need to donate to diabetes research anymore because these technologies are available. And finally, Halle Berry has promoted a myth that has done a lot of harm to the diabetes community. She claimed that she was able to wean herself off her insulin, and that other type 1 diabetics could do the same if they tried hard enough. Of course, that’s blatantly false.
Dr. Val: What’s your favorite new technology for diabetes management?
Kerri: My continuous glucose monitor (CGM). It doesn’t replace finger stick checks, but it helps you to see the trends in your blood sugar. For example, when you’re about to go to bed and you see that your glucose is 90, the CGM will give you some idea if that’s 90 on its way up, or 90 falling towards hypoglycemia, or 90 holding steady – you can go to bed and not worry about a thing. It’s like swinging on a trapeze only now I have a net.
Dr. Val: How does the machine work?
Kerri: It’s a small device that has a needle in it, and you stick it to a fleshier part of your body. There’s a small wire (introduced through the needle) that continuously samples the sugar level in your interstitial fluid. It’s easy to remove and should be rotated every 3-7 days.
Dr. Val: Is it painful?
Kerri: No, I don’t think so. I use the Dexcom Seven CGM. Occasionally I feel a little prick when I insert it but then I don’t even notice that I’m wearing it. Here’s a photo of me wearing it:
Dr. Val: Tell me about World Diabetes Day.
Kerri: It’s a global awareness campaign that was started in 1991 by the International Diabetes Federation. The United Nations recognized the event for the first time in 2007. It’s a day that directs the world’s attention to diabetes and the epidemic its become and the effort it takes to manage it. On World Diabetes Day bloggers want to spread the word that diabetes is not an invisible disease. It affects lives every day, and it deserves the world’s attention.
Dr. Val: What’s the most important thing for Americans to know about diabetes?
Kerri: They need to know that diabetes is not cured by insulin, and it’s not going away without their help. It’s a very difficult disease to manage. No matter how well you control your sugar levels, the effects of the disease take their toll eventually, and the effects can be devastating. We must not ease up on our research efforts, especially when the numbers of people living with diabetes are growing exponentially.
Most people assume that the flu is an inconvenience – an infection that causes a week of fevers, body aches, and discomfort. But it can be far more serious than that. In some cases, the virus can be fatal. I interviewed Joe Lastinger about the tragic loss of his 3 and-a-half year-old daughter to influenza. You can listen to our interview here.
Dr. Val: I’m so sorry to hear about your daughter’s death from influenza. Can you tell me a little bit about the events that led up to it?
Joe: The events were pretty unremarkable, until she died suddenly. Emily was three and a half at the time and had just started pre-school. One day she came home from school and she was very tired. She wanted to take a nap. Normally she didn’t take naps so we knew something was different. We took her to the pediatrician the next day and she was diagnosed with the flu. We were counseled to give her fluids, Tylenol and Motrin around the clock to control her fever, and to expect it to resolve in about a week.
However, Emily began experiencing more nausea a few days in. We contacted the pediatrician and she asked us a series of questions about her symptoms – but since she was urinating regularly, wasn’t having bloody vomit, or any other serious symptoms we were reassured. The next day my wife was in the kitchen (near the bedroom where she had left Emily) and I heard her scream. She found Emily on the ground, not breathing. We called 911 and the paramedics were able to get her heart started. She was transferred to the local children’s hospital, and was intubated. Unfortunately there was never any sign of brain activity and they slowly maxed out all the drugs they were giving her to keep her alive.
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