Fair

Life isn't always fair.

But sometimes you get to attend a fair.

How you feel about attending a fair can depend on both the circumstances, and those you meet.

Due to the hours I have spent typing away at this keyboard,  I was asked by a childhood friend if I would like to come work at her church's "Joyful Giving Fair".

"What," you might ask, "is a Joyful Giving Fair?" It turns out that it is like many Holiday Fairs around New England, except with a twist.

Many of the churches in New England have a Christmas Fair to raise money for the church and its good deeds: their food pantry, their fuel assistance, etc. This church holds a fair where each table is covered by volunteers from a charity organization, and every dollar you spend at the table goes directly to that organization.

As we are trying to help raise money for diabetes awareness and research, M and I thought that we could dedicate some time to this kind of work, so we said that we'd do it.

As one of the organizers, my friend seemed disproportionately enthusiastic about our participation. We didn't feel like we were doing her that big a favor! We were glad to help out my friend and JDRF at the same time.

But how would we do it? It somehow seemed inappropriate to sell baked goods to raise money for an organization that lets people know to count their carbs for better disease management. Furthermore, we are not especially crafty. What could we do?

Having absolutely no inspiration about how to raise money for diabetes, I contacted our local "special events coordinator" at JDRF.

Dear _____,

My daughter, M has type 1, and we sponsored a walking team this year. Because I talk about Type 1 so often, an acquaintance invited me and M to participate in her church's "Joyful Giving" fair.

I told them that M and I would participate, but I have no clue what we should do. Are there items that we could sell on behalf of JDRF? Flyers we can hand out? Ideas that you can share with me?

I would like to raise money and awareness of the organization, but I am not sure if there is a protocol that I must follow with JDRF.

Please advise. The fair is in a month.

Thank you,

Me

Unfortunately, the response was a little less than I had hoped for. It boiled down to: "We have bracelets that you can buy from us and then sell. Or we can send those paper sneakers that we sell for a dollar at the supermarkets. Otherwise, good luck!"

I suppose this might be one of the reasons that JDRF is so highly ranked as a charity. There is no overhead for things like mugs, or t-shirts, or anything else that might be sold at a Joyful Giving fair.

So M and I tried to wing it. We had the paper sneakers sent, and converted them to tree ornaments by punching holes in them and tying ribbons to them.

My mother also propagated some plants for us to sell - a big hit at our own church fair.

We set up, and everyone was kind to us. After 5 hours of talking to people, smiling, and explaining what an insulin pump is, we cleared $41. It would have been $21, except that my mother stopped by and gave us a $20 bill to show her support. (Thanks, Mom!)

All was not lost, however.

The highlight of our day arrived around noon in the form of an elderly woman who visited our table. Before I could dive into our spiel about JDRF and its good works, she told us that she had been diagnosed with type 1 66 years ago.

She was ten years old at the time.

She told us that she participated in basketball and cheerleading when she was M's age. She told M that she looked healthy and to keep up the good work. The she shared an oft-repeated slogan: "It's all in the attitude!"

At 76, I have to say, this lady looked pretty good. She said that she still uses Lantus and Humalog with the disposable syringes, and that they work just fine, thank-you-very-much.

She was a delight. And a testament to the effect a positive attitude can have on those with a chronic illness.

When she left our table, M said: "That just made my day. Just saying."

We grinned a lot that afternoon. And why not?

JDRF will have $41 more in its coffers. And we had our inspirational coffers refilled, free of charge.

Very cool.

Cashing in for JDRF.

Pizza

Fact: If you want teens to participate in any kind of extra effort, be it volunteering, doing an extra credit project, or whatever, it is easiest to get them to participate with the promise of food.

Fact: Teens are hungry, hungry people with seemingly bottomless stomachs.

Fact: Feeding more than one teen can get expensive.

Fact: Satisfying the tastes of several different teens can be a challenge.

Fact: Anticipating the serving size one must allot per teen can be tricky.

Solution: Order pizza!

It is cheap, comes divided into manageable portions, and has a flavor to match just about every taste!

But.

But, it is super high in carbs.

M has never been concerned with pizza in the same manner that she has been with cake, but it still takes a lot of skill and luck for her to keep her bg in range for several hours after consuming even one small piece (defined here as a one-inch wide slice of a 12 inch pizza).

The tricky part is that it doesn't seem to behave in a consistent manner. Cutting back the "dose" of pizza doesn't lessen the wacky impact it has. Adding more insulin seems to make no difference either.

So what is a mom to do? Neither M nor I find the option of making a stink about the lack of food choices to be a viable option.  Especially when the food is really only provided as a courtesy, not as a part of a culinary experience.

Additionally, people think we are crazy when M brings her own food, because pizza is so awesome.

Right now, even though she only has pizza maybe once every two weeks at events for church, school, or at the home of a friend, I still have this nagging feeling that we are playing a little Russian roulette with M's long term health.

So yes, folks. I will be sending food with M from time to time. After all, she doesn't even like the pizza provided at church. She eats it because she is hungry and there are no other options available.

And before you parents of non-diabetic children judge me by what an amazing killjoy I am, count your blessings that pizza is not on your list of worries.

I will offer up a prayer that it never will be.

Oh pizza, why must you be so cheap and easy?

Field of dreams

We traditionally eat dinner at my parents' house on Saturday. It's a good way for us to stay in touch and get together for a couple of hours each week. It usually involves some kind of beef (which M loves) some starch and a vegetable.

Not long after M was diagnosed with diabetes, however, we arrived at the house for our traditional fare, when my mother lets us know that we are having spaghetti. I was a little surprised at the announcement, as Mom knows that we had M on the rigid plan. This plan allowed us a certain number of carbs within a 5 carb range at certain times of the day. Pasta would surely put us over our dinner allotment for carbs.

But, Mom was grinning. She had made a discovery at the supermarket: Dreamfields Pasta, which claims to have only 5 net carbs per serving. Oh wait! Look closer. It has 5 digestible carbs per serving.

What?

If the idea of digestible carbs is new to you, it is to me, too. I continued to read the box:

Carbs: 41
Protected carbs: 36
Net digestible carbs: 5

Pardon me for being skeptical, but what the hell is a "protected" carb? I assume we are protecting it from being digested and absorbed into the human blood stream.

I wasn't buying it. Even if the company can somehow "protect" the carbs, how can doing that be any good for you? Do they wrap the carbs in Saran Wrap?

I looked on the Dreamfields website:

"Why do you say that Dreamfields Pasta only has 5 grams of digestible carbs when the nutrition label states that it has 41 grams of carbohydrates?

While the total number of carbohydrates is the same as traditional pasta, our patent-pending formula and unique manufacturing process protects all but 5 grams of carbohydrates from being digested. The Dreamfields fiber and protein blend creates a protective barrier to reduce starch digestion in the small intestine. The unabsorbed, or protected carbohydrates then pass to the colon where they are fermented, providing the same health benefits as fiber."

Yummy.

A unique manufacturing process! That spells flavorific!

Manufacturing: the same nutritional professionals that tried to convince us that creating artificial infant formula was better for our babies, only to be shot down by mother nature's unique "manufacturing" of easily digestible proteins.

Pardon me for feeling less than enthusiastic.

But, since Mom had gone to all of that trouble to make a special pasta, we ate it.

But we covered for 41 carbs with insulin. NOT for 5.

And guess what?

M's bg was in pretty good shape afterwards.

You would think that if we had given her enough insulin to cover for 36 extra carbs, she might have suffered a low. But she didn't.

So pardon me, Dreamfields, but I think you are full of hooey.

Hey! Maybe that's the unique manufacturing process!

Breast Cancer Envy

Breast cancer is a horrible disease. It threatens, and sometimes takes, lives. It alters the way a woman feels about herself and her own body. For this reason, it is recommended that women over forty start getting regular mammograms every year or two.

Billions of dollars every year are spent on education, research and prevention of breast cancer.

Kids in the high school where I teach sport "Save the boobies" wrist bands with the support of the administration.

There are organizations that will take your long hair, and use it to create wigs for women who are undergoing chemotherapy.

And every year comes the advent of breast cancer awareness month.

Today, M is participating in a breast cancer walk. A walk that is anticipated to have an attendance of over 5,000 people (it ended up being closer to 5,500!).

There are many wonderful events and campaigns that raise money for breast cancer research. I even remember nearly an entire season of General Hospital dedicated to breast cancer. During the season, the son of the breast cancer victim points out that while AIDS has turned out to be a popular charity, breast cancer kills many more people yearly.

Everyone wants to cure breast cancer. Do you think the victims of breast cancer are going to settle for better treatments? NO! They want a CURE! And I don't blame them.

But lets go back just a minute here. AJ Quartermaine, while breast cancer kills more people annually than AIDS, diabetes kills more people annually than breast cancer and AIDS combined.

While everyone seems to understand what breast cancer is, nearly 100% of the people I meet don't really understand what diabetes is. This includes some medical professionals.

We have diabetes walks. But the JDRF walk I attended last month, in the same community as M's breast cancer walk, had maybe 100 participants. MAYBE.

And, while General Hospital dedicated a lengthy, comprehensive, and detailed story line to breast cancer, what do we in the diabetic community get? Oliver, on Hannah Montana, is diagnosed with diabetes one day. Then we never see his bg meter again. Apparently Oliver is all better, and his daily management would not fit well into such a pop tween sitcom.

Finally, I am tired of people thinking that insulin is "good enough". Do you think that breast cancer patients think that mastectomies are "good enough"? I assure you, they do not.

Diabetics are expected to endure their illnesses, simply because it isn't "in your face". People can manage diabetes without you even noticing, so things must be good enough, right?

Nope.

Not even close.

Diabetes must be managed every minute of every day. It's like taking exams in class every day, except that not doing well could result in death.

Death.

We must need a better marketing team for diabetes. Maybe diabetics and their families are so busy handling the day-to-day struggles, that they don't have time to advocate for others with the disease.

Why does the public not seem to take diabetes seriously?

A nurse who goes to my church may have explained it best. She was commenting on another parishioner who routinely works very hard and volunteers regularly. But she, at times, pushes herself too hard, and doesn't take care of herself. The woman is diabetic.

One day, the nurse approached her and scolded her to take a break during our Christmas fair. Then she turned to me and said, "You know what they call diabetes, don't you? 'The silent killer'."

Well I, for one, am not going to remain "silent" any longer.

Good luck ladies!

The stages of grief

This most recent summer, I realized that being diagnosed with Type 1 diabetes, or any other serious illness for that matter, can fall into that category that utilizes the five (or seven, depending on your school of thought) stages of grief.

I do not necessarily agree that grief can be divided into stages. This is a very inflexible-everything-can- be-qualified-and-quantified-and-progresses-in-a-linear-fashion way of thinking.

But, this summer,  I did get a good look at stage 1 - Denial.

Although in M's case, it was more like stage 4. Her first stage was acceptance, which is technically supposed to be stage 5.

Never let it be said that M does anything halfway. She did denial absolute justice.

She denied herself information that would better help her manage her diabetes, by not checking her blood sugar.

She denied the value of that information by simply making up blood sugar numbers to plug into her pump.

She denied that this could cause her any health problems by thinking that her method of "management" would be adequate.

And when I started probing her with questions about her management, she denied to herself that I would ever figure it out.

Now that she is no longer in denial, I will have to wait to see what unexpected turn her grief will take next.

Right now the safe bet might be on one of the unofficial stages: "whining".

Yeah, if we ever get through it!

Concussion

As I may have mentioned, M is the goalie for her field hockey team. Although she has never played before this season, her improvement has been marked.

Earlier this week, however, her team got a new kind of penalty that neither she nor I had heard of. A player fell on the ball, apparently covering it with her body.

I guess this was a serious one, because M was set up in the goal while the rest of her team was set up behind the midline. A girl on the other team was given a one-on-one shot at the goal.

The girl wound up and smacked the ball. It traveled in an upward fashion, hitting May on the front of her (helmeted) head.

It would have been a lot cooler if it had deflected right back into the field, but instead it went into the corner of the goal.

I wondered if it hurt. So when M returned for a time out, I asked her how she felt. She said, "I have a wicked headache!"

Somewhat alarmed, but not panicked, I asked if she wanted some Tylenol. She said she would be fine, and finished out the game.

It is three days later, and she still has the headache. She took "the concussion test", which she did not want to do ("It's so friggin' long!"), and it came back as "not a concussion" but with "22 symptoms."

While I wait to hear from the trainer about her recommendations regarding a doctor visit, I decide to look up information about diabetes and concussions.

To my dismay, I found something. It seems that diabetics do not "withstand impacts to the head" as well as non-diabetics. This is something I had never thought about, and is certainly not up there with the "diabetic feet" issues that are so frequently communicated to the diabetic community.

Why, you may ask, would having diabetes matter to your head with regard to impact?

Evidently, if brain cells contain high levels of glucose and magnesium, they are practically invincible. Unfortunately, since the diabetic body doesn't use glucose very efficiently, and depletion of magnesium nearly always predates insulin resistance (in Type 2),  we have the perfect cocktail of brain cells' natural defenses going down.

Not good.

In the meantime, I will wait for advice from the trainer and the school nurse.

And I will look up new and exciting things for me to worry about.

JDRF vs. ADA

I am beginning to wonder if there is a competition /rivalry going on between JDRF and the ADA.

The fundraising walk in our area is a JDRF sponsored walk. I have been twice. About 100 people showed up both times.

The closest ADA "STOP DIABETES" walk is in Boston. Last year about 5,000 people showed up.

There are a couple of factors to take into account here. 1) Boston is a real, no-joke city and 2) the ADA supports research regarding both type 1 and type 2 diabetes. Since 90- 95% of all diabetes cases are type 2, perhaps the ADA will get more press and support as a result.

The JDRF only works with patients and research pertaining to type 1 diabetes, which is the one with the "dead" pancreas, that will not "go away".  (Since I am pretty sure that type 2 doesn't "go away" either, I am always surprised how often I must answer the question: "will she grow out of it?")

While the ADA sponsors M's diabetes camp, I have a soft spot in my heart for the JDRF.

On the other hand the aggressive tag "STOP DIABETES" makes it sound as if there will be cutting edge technology on the way at any moment. Bret Michaels has thrown his weight behind this organization.

Of course we have Nick Jonas and Mary Tyler Moore behind the JDRF.

What to do, what to do?

Since the JDRF walk was only a half an hour from my home, M and I volunteered what limited resources we had behind them.

The first time we walked, we simply showed up, paid $25 each, and walked the 5K circuit around the pond at NHTI.

This time we decided we would actually try to raise some money. After a few Facebook appeals, we recruited five walkers and raised over $600 (Thanks to all who donated!).

Again, there were only about 100 people there. There was a local radio station. There was a raffle. There was donated food. But there weren't a lot of people. The groups raised about $25,000 total. Which for 100 people isn't too bad. But it is disheartening to see such a tiny response. After all, the JDRF is the worldwide leader in funding research on Type 1, including the artificial pancreas, and the prevention of Type 1.

I know that Type 1 doesn't sound as sexy or life-threatening as cancer does. I know that people see insulin as a godsend that makes people's lives "normal". But more people die from diabetes than from breast cancer. And even though it is manageable, it is still hard. And when someone you love has it, it's really hard.

So maybe that's why the STOP DIABETES campaign is picking up steam. Maybe it sounds more exciting and proactive than a "research foundation".

Of course I wish both organizations the best of luck and a lot of support. We need to do whatever we can to find a cure.

Our walking team! Thanks guys!