Becoming an Advocate

Posted on February 26, 2014 by Laddie

The topic for the February DSMA Blog Carnival is: “Advocacy is a topic that is often discussed in the Diabetes Online Community. Can you be one and not even know it? What is your definition of an advocate?”

Until recently, most of my thoughts about advocacy were laced with guilt. I’ve spent a good bit of my life “talking the talk” and not “walking the walk”. I’ve been reluctant to advocate publicly for fear that the continuing responsibility of taking a stance would be more than I wanted to handle. I have been quick to criticize myself for being one who rides on the coat tails of the Real Advocates in the Diabetes Online Community (DOC).

Early November 2013 was a low point for me. November is Diabetes Awareness Month and many members of the DOC undertake huge projects to show their commitment to advocacy. As a relatively new blogger, I was totally unprepared for the onslaught of informational posts, photo projects, and tributes to diabetes heroes. I felt like a total slacker. By mid-month, my self-criticism mellowed a bit and I took a realistic assessment of what I had done and what I was doing. My 11/15/13 blogpost convinced me that although I wasn’t an established leader in the DOC, I was slowly becoming comfortable participating in advocacy projects.

I think that “advocacy” is taking something you believe in out into the world. Beliefs are easy. Sharing them with others is harder. Crusading to turn your beliefs into reality is harder still.

I find advocacy terrifying. In his “What is an advocate?” post, Stephen of Happy-Medium stated that “An advocate is not someone who is afraid of the word “advocacy“. I disagree with Stephen. I am slowing morphing into an advocate and I’m still terrified of the word. Once you move your convictions from the comfort of your brain and the safety of your soul to the outside world, there is no going back. The doors are wide open and you’re out there to stay.

On November 1, 2013 I would have said that I was not an advocate. People like Scott Johnson would have tried to convince me that I was wrong with the argument that telling my story as a blogger was enough to grant me membership in the “A Club“. My two co-bloggers, Sue from New York and Sue from Pennsylvania, would have called me an advocate because of the behind-the-scenes work that I was doing to help them with blogposts, graphics, and logistics. Many of my friends, both D and non-D, would have awarded me advocacy status because of my active lifestyle showing what is possible with and despite diabetes.

Frankly I think that I became an advocate on February 11, 2014. That is the day that I sent a letter to my family and some of my friends asking them to participate in the Spare a Rose, Save a Child campaign. My first blogpost about Spare a Rose was easy to write because I knew that most of the readers would be members of the DOC. That’s not advocacy. They already knew about it and supported it. I wrote a good post, but I was just going through the motions. It was advocacy when I pinned a scarlet “A for Advocacy” on my chest and wrote a second post to spread the message to the larger world.

I disagree with people who say that I have been an advocate for a long time despite my opinion that I wasn’t. I was a believer; I was a follower; I worked on projects. In my mind I did not become an advocate until I was able to look in the mirror and say “You are an Advocate.” I did not become an advocate until I was brave enough to say to others “This is what I believe and I am proud and strong enough to share my beliefs with you.”

This post is my February entry in the DSMA Blog Carnival. If you’d like to participate too, you can get all of the information at http://diabetescaf.org/2014/02/february-dsma-blog-carnival-3/

Miscellany

Posted on February 10, 2014 by Laddie

Today’s post is a bullet point view of a few things that are relevant to my life these days.

I seem to be able to relate almost everything in my life to diabetes. A few weeks ago I was playing golf and needed to know the distance to the pin so that I could select the proper club. I used my laser range finder which measures the exact distance to the hole by zeroing in on a crystal receptor on the flagstick. Someone asked me what the distance was and I confidently answered 161 yards. One of my playing companions had also taken a measurement and indicated that her device read 125 yards. I took another reading and also measured in the 120’s. Had I use the erroneous reading and hit a good shot, my golf ball would have gone into the desert past the green and resulted in a double or triple bogey. My immediate thought was that this was just like a blood test with diabetes. If my meter gives an erroneous reading, I over- or under-dose my insulin and end up with an unexpected and undeserved high or low BG reading.
I write most of my blogposts on my iPad and find that I make the same typing mistakes and get the same crazy autocorrects over and over again. My pinkie finger must not reach far enough for the “a”, so my most common mistake is to type “disbetes” instead of “diabetes”. Although I get a red line under disbetes, it does not autocorrect to diabetes. Some people would love to change the name of Type 1 diabetes, but I don’t think “disbetes” will have many supporters. A second mistake I often make with diabetes-centric writing is to write “lower card eating” instead of “lower carb eating”. One would think that I have an Ace of Spades on my plate instead of a piece of turkey. An email to Sue from New York after her sleep consultation ended up with two mentions of her “creep” consultation. Good thing I corrected those mistakes before sending the email although Sue did think the sleep study was somewhat creepy.
Autocorrects also sabotage my writing. “Bolusing” is often rejected by my iPad which insists on a substitution of “blousing”. The statement that I bloused 3 units of Novolog with my lunch is somewhat nonsensical. This is the third blogpost in a row where I have mentioned the podiatrist/author Neil Scheffler. The rejection of “Scheffler” for “Scheduler” brings to mind James Bond and Batman villains. Holy Guacamole, Batman, stay away from the The Scheduler!
Olympics Trivia. Late in January Abby the Black Lab’s sister was on the NBC Nightly News with Brian Williams in a feature about the threat of terrorism at the Sochi Olympics. Because black labs don’t have an aggressive bone in their bodies, that statement warrants an explanation. Abby’s littermate, Jackie, belongs to a Minnesota friend who is going to Sochi to watch her daughter compete in one of the skiing events. My friend was interviewed at her home about whether the terrorism threat was waylaying her family’s plans (it’s not) and the beginning of the clip showed Jackie bouncing and jumping up. “Not very good behavior” thought Abby who is jealous of her sister’s celebrity status.
Super Bowl Trivia. Pete Carroll, coach of the Seattle Seahawks, lived down the street from us when he was a Defensive Backs Coach for the Minnesota Vikings in the late 80’s. His two oldest children are the same age as my boys and they went to school together. Extremely nice family and congratulations to Pete and the Seahawks for a job well done.
My Arizona podiatrist is now my new best friend because the cortisone shot on Tuesday has returned my heel to A+ status. Hopefully this injury will not return.

That’s it for today, my friends.

A Special Candy?

Posted on December 12, 2013 by Laddie

On Monday I published a blogpost complaining that I had been stuck on Level 149 of Candy Crush for over a month. Shedding the tears of my candy heart persona, I whined about the frustrations of Candy Crush and expounded on the similarities and differences between diabetes and Candy Crush.

Just a few days later one of my problems has been solved. Less than thirty-six hours after that post, I managed to pass Level 149 with moves to spare and a reward of three stars. Was it skill or dumb luck? Was the blogpost a special candy? A priceless booster that I earned through intelligence, good looks, and hard work? I have no idea and I don’t care. All I know is that the dancing girl jumped up and down to celebrate my victory. I can finally move to Level 150 and cruise along for a while until I become mired in another frustrating impossible-to-pass level.

Lest you get too excited about the power of the written word in the blogosphere, I only solved one of my problems. I still have diabetes.

Just a Game of Candy Crush

Posted on December 9, 2013 by Laddie

I’ve been playing Candy Crush Saga for eight or nine months. It was fun at first as I sped through the easy levels. Now I’m not even sure that I like it anymore. I tend to get stuck on hard levels for weeks at a time. I refuse to invest money in the game and never purchase boosters and special candies that might speed up my journey to victory lane. I play quests for three days to unlock new levels rather than pay $.99. I don’t beg my Facebook friends for extra lives because I’m usually relieved when I run out of lives and don’t have to play anymore.

I’m currently on Level 149 and am not convinced that I will ever make it to Level 150. There might be some element of skill that I’m lacking, but I suspect that only a burst of pure luck will propel me past this roadblock. I know that I have gained some Candy Crush mojo because whenever I play the beginning levels for fun, I find them to be much easier than they were the first time around. But in general my experience has been that when I finally conquer a difficult level, it’s primarily the result of luck with lots of candies and explosions rather than any convergence of skill and strategy. I always feel relieved to move to a new level, but rarely do I revel in a feeling of accomplishment because I never know why I finally won.

Most of us find Type 1 diabetes to be a cruel taskmaster. It’s hard to keep our blood sugars in range even when we make good decisions and follow the rules. Blood glucose meters and CGMs give us daily feedback, some which is positive and some which is negative. Quarterly or semiannual A1c’s are our report card. Yeah, they’re just numbers, but somehow they burrow their judgements into our souls.

Now just imagine if diabetes treated us like Candy Crush. If you fail to win a game in Candy Crush, you are given the message: “Level failed! You did not reach the goal! Try again.” If that isn’t enough, the next screen rubs salt in your wounds by saying “You failed! You did not finish all the orders. Retry.”

In a Candy Crush diabetes world, our blood glucose meters would provide comments along with our numbers. In response to an elevated number like 281, you’d get a scolding along the lines of “You failed! You are out of range! Try again tomorrow.” These accusatory rantings would of course be accompanied by a little dancing girl with a big frown. A worse scenario might be a crying candy heart which gives you the message that you have “no more lives” and it will be 23 minutes 17 seconds until you get a new life. In this world there is no reward for trying hard and no respite from the repercussions of failure.

Fortunately diabetes is somewhat kinder than Candy Crush. Most of us who participate in the Diabetes Online Community (DOC) work hard to support each other and remind ourselves that we are not defined by the numbers on our diabetes scorecards. We celebrate our victories and retweet congratulatory messages of “Wonderful. Level completed!” If I were to label someone or even myself as a failure, I would quickly become the victim of universal condemnation by my fellow D-peeps.

In many ways my diabetes is a saga that is not that different from Candy Crush. Every win is hard fought and has elements of luck and skill. Failures are rampant with the only recourse being to try again. The game is seemingly endless with each victory just sending me to another challenge with a slightly different scenario. Chocolate is an epidemic roadblock to success in Candy Crush and there is no doubt that chocolate has more than once undermined my attempts to tame the carbohydrate-craving monster that lives within me. Rumor is that there is a conclusion to Candy Crush, but it is not in sight for me. I wonder if that finish line is similar to the ubiquitous promise of a diabetes cure in five years….

I suppose that there is one huge difference between Candy Crush and diabetes. Although it might be difficult to do, I can choose to stop playing Candy Crush and turn my back on striped candies, color bombs, and jelly fish. But with Type 1, there is no deleting the app on my iPad. I can only keep playing the game while accepting my successes and failures and doing my best to keep moving forward. I think I’m on Level 1,856,913 of diabetes. What’s the prize? I’m not quite sure, but I think the prize is getting to play again tomorrow. And the next day. And the day after that.

My Eight Days of Chanukah Wish List

Posted on December 5, 2013 by Sue from Pennsylvania

1. I wish that frying potato latkes wouldn’t mess up my entire kitchen. The oil gets all over everything and grating potatoes is a hard thing to do.

2. I wish that I lived part time in Atlanta so that I could see my two children, my son-in-law and granddaughter more often.

3. I wish that in my retirement years I didn’t have to spend so much time trying to fight Medicare for a CGM for my husband.

4. I wish I could be a kid again for the 8 days of Chanukah so that I would get 8 gifts, one each night.

5. I wish that Laddie, Sue from New York and myself could sit down together and have a cup of coffee.

6. I wish I could eat anything that my heart desired and not gain any weight.

7. I wish that I could tweak my nose and have my house magically get cleaned.

8. Most of all, I wish the decision from our Administrative Law Judge would get here. Waiting for over five months…and still waiting…is way too long.

A New Christmas Tradition

Posted on November 26, 2013 by Sue from New York

My daughter has instituted a new tradition for our family gift giving at Christmas. Who knows, maybe it will carry over to birthdays, anniversaries and other times of gift giving. I hope it does. It all started when I got an email at work this week from the county Office of the Aging, announcing that we could pick up an ornament from the tree in the lobby with an anonymous senior’s Christmas wish list. These seniors selected might not otherwise get anything for Christmas. I forwarded the email to my son and daughter. Both replied that they wanted me to pick them up an ornament. My daughter then announced that in lieu of a gift to them, she and her husband would like to have me donate to a charity in their name and put a note under their tree with the details of the donation. She said that would mean more to her than material goods because she has already been blessed in so many ways, and she would like to bless others not so fortunate. I replied that it was a great idea, and I would like to be included. I then asked my husband and son what they thought, and they agreed.

We all know examples of others who have given selflessly to those less fortunate. One example that comes to mind is Sue from Pennsylvania. When she was employed at a law firm, every year the employees would get a wish list of things from a charity organization that an anonymous less fortunate family would enjoy for Christmas. The employees would purchase all the items and give them to the charity, which would give the gifts to the family. One time Sue and another employee purchased a new bike and helmet for one of the children. What a blessed Christmas that child surely had. As Sue says,”Paying it forward is not only a great thing to do for ourselves, but what a great lesson to give to our children about the beauty of giving to others who are so less fortunate than ourselves.” Well said, my friend.

My daughter told me that our local food pantry is almost empty. She was told that one family couldn’t get to the pantry because their car broke down so they went hungry. She went to the grocery and bought food and brought it to the pantry. I plan to do the same this week. There are a lot of people who are going hungry in this economy. With the holidays approaching and the schools closed, there will be children going without food at home who would normally get their free breakfast and lunch at school.

What is your new Christmas tradition?

UPS and FedEx: Helpful Info

Posted on November 11, 2013 by Laddie

Many of us with diabetes purchase our medical supplies and prescriptions online and have them shipped directly to our homes. There is nothing more frustrating than to come home from work and find your insulin on the front porch in -10 degree weather (Minneapolis in January) or +110 degree weather (Phoenix in July). Some of us have waited all day in an upstairs apartment for the arrival of a new pump only to find a sticky note at the building front door announcing a failed delivery attempt.

Depending on where you live, these problems can be avoided with a little advance planning. I live in a suburb of Minneapolis and have both a FedEx Office and a UPS Store within 10 miles of my house. By using online tools and programs provided by FedEx and UPS, I am able to route my packages to these stores and avoid a lot of the frustration that accompanies botched package deliveries.

Most of my medical supplies come from Edgepark and are shipped through UPS. I receive an email when my supplies ship along with the UPS tracking number. After that I benefit from a program called UPS My Choice. The slogan for this program is “Get Home Delivery on your Schedule.” You need to sign up for this program ahead of time and there is no charge for enrollment.

With the UPS My Choice program you get free-of-charge delivery notices along with an approximate delivery time. You can use the Authorize Shipment Release to request that eligible packages be dropped off without a signature. Most importantly you get the ability to schedule a delivery time that fits your schedule, reroute the package to another address, or reroute the package to a UPS Store where you can pick it up at your convenience.

If you enroll in the free version of the My Choice Program you must pay $5 each time that you use the reschedule or reroute options. When I know I won’t be home for a delivery that has a 3-month supply of test strips, CGM sensors, reservoirs, and infusion sets, it is worth $5 to me to know that I can pick up the package at the UPS Store without worrying about temperature extremes, theft off my front porch, or signature requirements.

Another option is the UPS My Choice Premium Plan. An annual fee of $40 entitles you to unlimited reroutes and reschedules of your packages. Because I don’t use the service enough to justify the $40 charge, I choose to pay $5 per use. But if you have a home business or buy everything on Amazon along with lots of medical deliveries, this plan might be a better deal for you.

FedEx has a program called Hold at Location (HAL) where you can ship or redirect a package to a FedEx Office location. When a package is set up for transit, you can have the sender select the HAL service. They would address it with your name, the address of the desired FedEx Office, and select Hold at Location. Many large companies won’t bother doing this for you and sometimes you don’t know ahead of time which vendor they are using to ship your package anyway.

What I do with FedEx is wait until I have received the tracking number from the shipper. At that point I can go into the FedEx tracking site and select the option of redirecting it to a nearby FedEx Office location. This service is available for FedEx Express, FedEx Ground and FedEx Home Delivery packages. I can do this before any delivery attempt is made or after I have received a door tag when I missed the delivery. It is incredibly convenient and unlike UPS, there is no charge for this service. I reroute almost all of my temperature sensitive and/or valuable packages to FedEx Office so I don’t have to deal with staying home to accept delivery.

When I signed up for UPS My Choice a few years ago, it took a day or two before my account became active. Therefore I suggest you sign up ahead of time so your account will be ready to go when you need it. With FedEx there is no requirement to register ahead of time.

Be sure to understand the rules and restrictions of these programs. For example, FedEx Office will only hold your package for 5 business days and in most instances, the person to whom the package is addressed must pick up the package and show a valid photo ID. Know that not all packages can be released by an online signature if the shipper requires a delivery confirmation signature.

To find out about or enroll in UPS My Choice, click here. To learn about FedEx Hold at Location, click here. If you live in a rural area/small town or have special needs and can’t find a solution online, call UPS (1-800-PICK-UPS) or FedEx (1-800-GoFedEx) to learn about how they can help you. Even if you can’t reroute a package to a store, you may have the option of rerouting it to another address or setting up a delivery appointment.

There are many complications and frustrations in our lives with diabetes. Hopefully you can use options provided by UPS and FedEx to at least make receiving your medical supplies a little bit easier.

Snippets of My Childhood

Posted on October 1, 2013 by Laddie

Today is No D Day when those of us who normally blog about the D-word take time to open windows into other parts of our lives. Sue from New York, Sue from Pennsylvania, and I have each written posts with memories and photos of our childhoods. Thanks to George of Ninjabetic for organizing this day, and click here to read other No D Day Posts.

I was born in Greenville, South Carolina. I was the youngest of three children and my mother always said that I raised myself. Some of that was the result of benign neglect, but mostly it was personality-driven. I always wanted to do things myself and didn’t want anyone helping me or watching over me. For better or worse, I don’t think that I’ve changed very much.

I grew up in the South where women and little girls wore hats and gloves to church. My father wore a hat to and from work every day along with his suit and tie. Little girls wore dresses to school and on cold days added a pair of slacks to keep legs warm. I went to an Episcopal day school and remember bobby-pinning a lacy chapel cap to my head every day for worship services. Boys seem to escape most of the hat requirements, but the plaid and striped jackets that my brother wore in many photos seem a worse punishment than hats.

With one set of grandparents in Washington State and another in a suburb of New York City, we were not strangers to airports and train stations. I don’t remember the small plaid suitcases, but I do remember the brown tie shoes. The brown tie shoes that turned into black and white saddle shoes as I got older. The saddle shoes that I was mortified to wear because the popular girls at school were wearing Bass Weejuns penny loafers and later on loafers with tassels. I think that I got a few years of loafers before going to girl’s boarding school in 9th grade and returning to uniforms and brown tie shoes.

*We spent a couple of weeks every summer at Pawley’s Island, SC. I have wonderful memories of hot days in the sun and homemade biscuits, fried shrimp, and hush puppies. I can still smell the Coppertone oil that my sister and I used to enhance her tan and unfortunately my sunburn. My brother got daily entertainment by pretending he was a shark and attacking me in the ocean. As much as I love the ocean, I still wonder what creatures are lurking in the shadows.

Lots of memories from long ago.

Special Memories of My Mother

Posted on October 1, 2013 by Sue from Pennsylvania

Today is No D Day when those of us who normally blog about the D-word take time to open windows into other parts of our lives. Laddie, Sue from New York, and I have each written posts with memories and photos of our childhoods. Thanks to George of Ninjabetic for organizing this day, and click here to read other No D Day Posts.

I had a wonderful and loving childhood despite the fact that my parents divorced when my brother was 6 and I was 6 months old. My father joined the Merchant Marines after the divorce and although he was out at sea for long stretches of time, my Mother made sure that we had a good relationship with him.

During summer vacations while my brother was at overnight camp, my Mother and I would spend a few weeks in the Catskill Mountains where our family from all around Pennsylvania and New Jersey would congregate for memorable weeks of togetherness. I loved those vacations. This was when I got to spend special time with my Mother and our extended family. Throughout my life, family was very important to my Mother and she instilled those same values in my brother and me.

In the Catskills, all the youngsters would go to camp during the day, and at night everyone would get dressed up in their finest clothing for dinner and great shows after dinner. I loved the mountains and especially loved dressing up but more then anything, I loved being with my Mother. During the rest of the year, my Mother was a working mom who owned her own business and although she was devoted to my brother and me, she was at work during the day. So to have this time with her was very special.

As a footnote to my little story, when I was 14 my parents remarried each other and were together for the next 18 years until my father passed away. My mother passed away at the age of 93 having spent 73 years in her own business as a Jeweler on Philadelphia Jeweler’s Row.

A Childhood Spent Outdoors

Posted on October 1, 2013 by Sue from New York

Today is No D Day when those of us who normally blog about the D-word take time to open windows into other parts of our lives. Laddie, Sue from Pennsylvania, and I have each written posts with memories and photos of our childhoods. Thanks to George of Ninjabetic for organizing this day, and click here to read other No D Day Posts.

I grew up in the 50’s and 60’s in Scarborough, a seaside town in Maine. My dad loved the mountains, and we spent our summers camping and mountain climbing and our winters downhill skiing. My mother loved the water, so my parents would often compromise and we would camp at the lake. When we weren’t camping, we spent lazy days at the beach.

My brother Bill has a funny story of the time Dad took him and my other two brothers, Dave and Rick, skiing on Mt Washington:

“When I was in my early teens, my father decided that it would be interesting to climb Mt. Washington in the winter. We couldn’t afford to buy crampons, so he made four pair, for me, him, and my two younger brothers, Dave and Rick. We went up the carriage road from Pinkham Notch to Lion’s Head. Going up Lion’s Head was very steep, and the snow was deep. We were exhausted when we got to the top. Above Lions Head, the snow had blown away, which was good, but the cone up to the summit was pure ice. At one point close to the top, I looked down and realized that if one of us slipped, we would careen down the ice until we hit the rocks at the bottom. It was bitterly cold, and there was no one else on the mountain that we could see. I wondered if this was a good idea. Of course, now that I have passed my father’s age at that time, I realize he was mad!

We got to the top, but it was late in the day. My father said: “Now for the easy part, we just ski down the auto road”. However, the auto road was also pure ice, and we only had wooden skis! At one point, my father’s skis gave way and he slid down the slope out of sight. I said “Dad?” Luckily, he responded. I asked him if I should come down to get him. He said “No, one idiot down here is enough”. He took off his skis, put on his crampons, and climbed back up.

We got below the tree line at dusk. Now we had nice snow, and no ice. The auto road was wide enough that we could kind of see the boundaries in the dark. However, the car was not at the bottom of the auto road, it was at Pinkham Notch. Dad decided that he and Dave would ski down a hiking trail to Pinkham Notch. Dad told me to go with Rick down the auto road, and they would pick us up in the car. I asked him if that was a good idea, and he said he and Dave would be fine. Rick and I got to the bottom of the auto road, and waited, and waited, and waited. It was very cold. Finally, the car pulled up. I asked what took them so long. They said they couldn’t see the trail in the dark, and kept skiing into trees!”