Most days I take a one hour walk around Prospect Park which sits one and a half streets from my home. It's a majestic park, designed by the same landscape architects who designed Central Park in Manhattan, Frederick Law Olmsted and Calvert Vaux. The web site describes the park as a 526-acre urban oasis located in the heart of Brooklyn featuring a 90-acre long meadow, 60-acre lake, Brooklyn's only forest, the nation's first urban audubon center, a zoo, and the Celebrate Brooklyn! Performing Arts Summer Festival. Really, it's a great park.
You might find one oddity about my walk: Weekdays I walk outside the park, along its perimeter, and weekends I walk a path inside the park. Being the results-oriented perfectionist that I am, and expediency being my major objective when I power-walk, I find the more level outside perimeter easier. And I still get to enjoy the foliage over the fence.
Sometimes I walk elsewhere just to break the monotony of routine. I'll walk an hour to buy groceries (and then bus back) and once a season I head to another Brooklyn marvel, Coney Island. That's where I headed this past Memorial Day weekend. It was an exquisite day, 70 F, sunny with a cool breeze, the city was gentle and tranquil with everyone gone and so I hoofed two hours to the boardwalk along the Atlantic Ocean that distinguishes Coney Island. When I got there I desperately wanted an ice cream cone and to sit on a bench with it and stare out at the surf and sand. So I walked the equivalent of 15 streets along the boardwalk to where the famed 100 year old roller coaster is, the Cyclone, and there found the food vendors. Ice cream cone sought and bought, I retired to a bench and was joyously licking away at my cone when a voice broke into my reverie.
A nice looking young man was inquiring where I bought my cone. After I told him he asked me some more cone-specific questions. Now I realized this was no longer a conversation about ice cream, but he was trying to pick me up. If you don't know the meaning of "pick up" as I discovered my Texas girlfriend didn't when I called her moments later to relate this remarkable event, she said after I explained, "Oh, you were being hit on!" During my pick up, my young man, unperturbed by my not knowing what a Big Dipper is (do you?), asked if he could bring me another cone. I did not divulge that one is quite sufficient for a diabetic, but instead that one was all I could manage. Not to be deterred, he asked if he could bring me a drink. At that point, I pleasantly waved away his offers and he went on his way down the boardwalk.
I sat for another half hour enjoying the tranquility of the beach and then meandered back down the boardwalk to where I had entered to get the bus home. It was a perfect day: my walk, the view, an ice cream cone and a nice young man. Happiness really does come in the small moments: a slice of sunshine, an unexpected human interaction, and not least of all a small, perfect scoop of vanilla chocolate chip ice cream in a sugar cone. When you see the cover of my new book this July, 50 Diabetes Myths That Can Ruin Your Life: And the 50 Diabetes Truths That Can Save It, (available wherever books are sold, including Amazon and Barnes and Noble online) you will smile and remember this story.
Most people with diabetes are afraid to disclose that news when it comes to getting hired. Many employers personally discriminate against people with diabetes and many jobs restrict hiring people who use insulin. However I think, unless the position is one directly responsible for people's safety, that any smart employer should be discriminating -- for us, just as President Obama did today.
Today the President announced his supreme court judge pick, Sonia Sotomayor. I saw the announcement as ABC broke into its regularly scheduled morning news broadcast. I listened as they listed why she is a historic pick: The first Hispanic and the third woman -- yet, no mention that she has lived with type 1 diabetes since the age of eight. Now, that’s historic. The first type 1 diabetic nominated to the Supreme Court bench.
I didn’t know at first if I was pleased that there was no mention of her diabetes or not. After all, I wouldn't want anyone thinking she couldn't do the job. But, really, living with type 1 diabetes, should be seen as a huge asset. Judge Sotomayor, along with growing up in a housing project in the South Bronx with only her mom from the age of nine, managed to graduate top of her class at Princeton, get her Juris Doctor from Yale Law School and become editor of the Yale Law Journal, be nominated by President George H. Bush to a seat on the U. S. District Court in NY, be the youngest judge and the first Hispanic federal judge in New York State, and manage a chronic illness for more than four decades.
President Obama said Sotomayor has, “Intellectual firepower and the common touch.” Due to managing diabetes, she also has: Mastery over the constant acquisition and implementation of new information, extraordinary time-sensitive management skills, in-tact emotional balance and resiliency, 24/7 decision-making skills no matter how tired she is, and the ability, in the face of an uncertain future, to remain hopeful and empathetic. These are the qualities most type 1s I know have developed living with diabetes.
So, actually, I'm thinking this makes us more, not less, for a potential employer. More capable, more flexible, more determined, more responsible, more committed, more courageous, more remarkable. Simply, more.
Sharing experiences makes a difference to others
July 22nd I've been invited, among many other esteemed diabetes bloggers, to attend a Roche social media summit. Roche, a major pharmaceutical in diabetes care, is, as they say, "looking to see how bloggers and companies can work together to provide accessible content to the diabetes community." They are obviously seeing that more and more patients are talking to, learning from and informing other patients.
Our benefit as bloggers is to see if we can help patients even more by providing even more information (I happen to know Roche sponsors many valuable informational seminars), and of course, it's also a nice opportunity for us, who mostly blog alone in our homes or offices to get out (albeit the conference is in Indiana, Roche headquarters) and meet each other.
The fact that patients are looking more and more toward other patients for information, guidance, understanding and support is occurring at lightning speed for several reasons:
1. The internet has made this possible
2. Too many general physicians and health care providers are not very knowledgeable about diabetes
3. Even endocrinologists have less and less time to spend with patients
4. A chronic illness like diabetes requires ongoing learning and support
5. A self-managed illness like diabetes requires the patient is made exceedingly knowledgeable to care for themselves, including both the medical acumen and ability to develop emotional resilience
6. A chronic illness like diabetes requires you get the knowledge when you're ready. A friend, who has type 2 diabetes, told me the first year of her diagnosis when free classes were available to her, her head was spinning so much she barely took in the information. Now a year later when she's ready, it will cost her $1,500 to repeat the classes.
Last month I gave my diabetes presentation to a group in Jersey, City, NJ. I spoke to about 30 patients with about as many pharmaceutical reps also in the room sitting behind their vendor tables filled with brochures and promotional items like pens and tape measures. I know there was also at least one endocrinologist in the room, who is an exceptionally caring physician, and a few diabetes educators and dietitians, also exceptionally concerned for their patients--otherwise they wouldn't have created this learning opportunity for the community.
At the end of my program, all the medical people congratulated and thanked me. Also, almost every pharmaceutical rep came up to me and told me what a wonderful program it was and how much more they understood what dealing with this disease is like.
Then, as I was leaving, one young man grabbed me by the arms and said, "Please, I have to ask you a question. I only want to talk to you. You get it, you really get it! Not like my doctor!"
I listened to his question and gave him my opinion, which I let him know was my opinion. I also offer him the sage advice that if he wasn't happy with his doctor he should look for another. He said he had an appointment next week with, in fact, the doctor in the room that night. Then he asked another question, and then another. And when finally he was spent, his eyes were tearing with little droplets of gratitude.
We have an edge over doctors. We live it, and there is an immediate, invisible bond. It will be interesting to see what Roche is thinking, and I do commend them for thinking, and wanting to and reaching out to learn from us. It will also be interesting to see what I learn. I certainly know patients learning from patients isn't going away and the more we can all reach out to others the better.
Well, I suppose this twittering is useful for updates on my tendonitis, as if anybody cared, but since I seem to be almost recovered I'm going to leave these 141 characters as my last tweet and testament. Sure, and just when I got the word count down! But, to be frank, my thoughts unfurl in longer segments than tweets.
Blood sugar high a few hours after cortisone injection. By dinner all was normal and woke up with typical sugar number. Yea! Oh, yeah, my wrist's feeling pretty good too!
I just gave my first virtual diabetes presentation -- and to the Mayo Clinic! I'm psyched. Will be hard to sleep tonight and will have to wait till tomorrow for feedback. But, reminds me why I do what I do.
character count: 166, getting there!
Look at that. When I posted my last entry about twittering I really expected I'd have uploaded a twitter, or at least a twit, (oh no, that's me), I mean a tweet every day. And here three whole days have gone by. Trying again, today's tweet:
Just went to the hand doctor. Confirmed- tendonitis. Cause? Unknown. Prevention? Unknown. Only thing I know is that was the most painful shot I ever got! Right into my wrist! Now have to monitor my sugar for 24 hours as cortisone will likely send it sky high!
Oops, 212 characters. This 140 characters is the hardest part of all!
My hand’s in a stiffer wrist brace I bought on Amazon, and I have an appointment with the hand doctor Monday. Hopefully I’ll know for sure what this is, carpal tunnel, tendonitis, diabetes cheiropathy.
trying not to use the computer much, I’ve decided this is a perfect opportunity
to twitter. You see, I don’t twitter. I’m still a dinosaur who remembers Bonanza,
I Dream of Jeannie, and when I lost my job eight years ago and my husband said,
“O.K., the first thing we have to do is set up a home email address for you” I said, “Why?”
OK, I learned that lesson.
While I’m trying not to use the computer much, I’ve decided this is a perfect opportunity to twitter. You see, I don’t twitter. I’m still a dinosaur who remembers Bonanza, I Dream of Jeannie, and when I lost my job eight years ago and my husband said, “O.K., the first thing we have to do is set up a home email address for you” I said, “Why?” OK, I learned that lesson.
twitter? I mean who cares what I’m doing, and following people sounds like I
need a whole ‘nother 24 hours in my day to be in anyone’s posse. Besides, if you’re
really doing something great, wouldn’t you be doing it rather than writing
But twitter? I mean who cares what I’m doing, and following people sounds like I need a whole ‘nother 24 hours in my day to be in anyone’s posse. Besides, if you’re really doing something great, wouldn’t you be doing it rather than writing about it?
since I’m trying to cut down on keyboard time, here’s my first go:
But, since I’m trying to cut down on keyboard time, here’s my first go:
I’m drinking my second cup of coffee, just had to have it, and planning my
morning walk. Hoping avidly it won’t
rain when I have to hustle myself out of the house tonight and go into the city
for a friend’s birthday party. Does that make me a bad person?
Right now I’m drinking my second cup of coffee, just had to have it, and planning my morning walk. Hoping avidly it won’t rain when I have to hustle myself out of the house tonight and go into the city for a friend’s birthday party. Does that make me a bad person?
I know, I
know, too long, 205 words. I’ll get better, I promise.
I know, I know, too long, 205 words. I’ll get better, I promise.
are you doing right now?
Hmmm…what are you doing right now?
Bum ankle last year
My current companion
Have you read Blindsided by Richard Cohen? I've mentioned it before, and you really should. Already suffering with MS for 20+ years, Cohen got cancer, twice. Thus the title. There's a presumption, I think most of us make, that if we already have something, like diabetes, that's it, we've got "ours" and so cancer, parkinsons, MS, MD, Alzheimer's should pass us over. But, life being life, by now we've learned there's no such thing as fair, (although it seems I have to be constantly reminded) and we are as vulnerable to getting anything as the next guy.
Lately I feel like Mr. Cohen, blindsided. Not by anything major like cancer, but by lots of little ailments. Last year I had an ankle incident and had my foot in a boot cast for three months. It came out of nowhere. I stepped out of my friend's car after a nice day in Connecticut visiting my parents and walking down the street I felt my ankle go out from under me. Bam, I spent the next three months in a cast.
A week ago, my wrist started hurting. Of course I ignored it the first few days, then when it didn't subside I went to the doctor to hear a diagnosis of tendonitis. Why? Probably overuse at the computer. Ah, modern day ails.
So now I'm in a wrist brace debating whether to go to the hand surgeon I got a referral for. And, I'm in intermittent pain, waiting to see if it subsides. My increasing hearing loss seems makes me nod my head even though I may not have heard you and my tinnitus, that began a few years ago, I wouldn't wish on my worst enemy, not that I have any, of course.
These aren't big things, really, but in a life already defined by taking 3-6 shots a day, pricking my fingers 4-7 times a day, calculating everything I eat, eating when I don't want to because I'm low, adhering to a rigorous walking regimen, having several mild to energy-robbing lows each month, don't I have enough to contend with? Didn't someone write this down in the big Book of Life?
Riva Greenberg: √ Diabetes. Done.
How sneaky is this? I recently received a letter from my former direct mail pharmacy, CVS Caremark-I seem to still be in their database. Thankfully, I am no longer in their plan.
The letter lets me know that they're making some changes in how they pack and ship insulin vials. I quote from their letter:
"Our new process will check the National Weather Service forecast for your area for the time period that we expect your order to be delivered. Based on the temperature range during that time, we will determine the best shipping method to use to protect your insulin. The chart below explains the different shipping methods based on the weather forecast." Their chart indicates:
86 degrees or higher gets next day delivery with a cold gel pack
78 degrees to 85 degrees, gets second day delivery with a cold gel pack
32 to 78 degrees gets regular delivery without a cold gel pack
Now, what if we have a temperature snap, hot or cold, which happens frequently today? More critical, and likely, what if your insulin sits in a postal place overnight in a hot room with no air conditioning? Or a cold room and it freezes? While Caremark is checking the weather, are they checking the storage areas where insulin will sit before it is delivered? Hmmmm....no mention of that, I think not.
The best part of the letter for me was this: "Even though insulin manufacturers say that it is okay to store insulin for limited time periods at temperatures up to 85 degrees, CVS Caremark is taking extra care to make sure that your insulin is protected by shipping insulin with a cold gel pack if the temperature in your area is forecasted to be 78 degrees or higher."
In other words, aren't we great? CVS Caremark is saying. Here we're going above and beyond what's called for to protect your insulin. Guess what? Before I received this letter, my insulin ALWAYS arrived with a cold gel pack regardless of the weather.
I get it. The economy is contracting and here's another way to save bucks. But when companies begin fooling around with our medicine it's unconscienable.
It wouldn't hurt to send Caremark a letter, especially if you received this one, letting them know how much you do not appreciate what they are trying to pass off as extra care. Now I think lack of "care" is what "marks" Caremark.
If you've been following my search for, and acquisition of, my very first medic alert bracelet, you know I found one on American Medical ID. You'll also know I bought just the plaque, the center part of the bracelet that holds the essential emergency information, and enlisted my friend who makes jewelry to make the actual chain.
While you can certainly order your bracelet with a chain, I figured it would be nice to have the chain be a little special. I also used that as an incentive to actually wear this new adornment.
So pictured here is the outcome. The top picture shows the bracelet with the plaque, it's sterling silver and the information is on the back. There's actually enough room between the plaque and my wrist that you don't have to take the bracelet off, as I suspected someone would, to read the info. You can just flip it to the back side while still on my wrist. The second picture shows the two-toned chain I had my friend create.
I'm pretty happy. It's a nice looking piece of jewelry and yet recognizable as a medical alert from the emblem. I have found the plaque, since it is heavier than the chain, tends to often fall to the side of my wrist or the underside of my wrist, amazing the smallest things we don't think about. But I guess it doesn't really matter. It's there, where nothing was there before, and that matters more.
As to my question of whether it would bother me to wear a constant reminder that I have diabetes, I actually haven't found that it does. Maybe it's because I'm still liking the bracelet I designed. To be honest, since I have made an agreement with myself that I will not take it off, since you know what will happen if I do--I'll run out of the house on a short errand, not put it on, and something will happen where I'd need it--so far I notice soap has a tendency to find a home in the little links. Oh, well....