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!

A call from the nurse

So M has been in high school for about 6 weeks.

As with most high-schoolers, there have been some bumps along the way, but for the most part her transition has been pretty smooth, especially considering that her previous school was so tiny. And Montessori.

In a small Montessori school, diabetes was pretty easy to manage.

M could eat when she was hungry. She could check her bg any time she felt like it. She could leave her work for a moment without losing valuable instruction time.

In traditional public school, these options are not typically available.

For example, students are not allowed to eat in class.

Oh sure, because she has a "disability", M is permitted to eat in class. But if no one else is permitted to eat in class, then M feels like she is making a big stinky deal out of being "special".

To check her bg, M either has to check it in class, which causes a distraction, or excuse herself to go to the bathroom (Ick! High school bathrooms!) or the nurse's office. Leaving the room excludes her from valuable instruction time.

Not to mention that racing from room to room, visiting her locker, carrying and organizing a bunch of stuff, etc. gives her plenty of opportunities to "forget" that she has to take care of herself.

Overall, she forgets less than she might.

However, while at work the other day, the phone in my classroom rings. I pick up the phone and our school secretary asks me to hold the line for M's school nurse.

I go into "I-am-calm-and-will-not-panic" mode.

I try to sound pleasant as the nurse asks how I am. I say something foolish like, "I don't know. You tell me!"

She explains that M has had a couple of lows that morning, and that it took her a few hours to shake them. She had to lie down in the office for a while and missed her Spanish class and thus valuable instruction time. She is fine now.

The nurse goes on to explain that M has not been eating breakfast in the mornings, which is news to me. The nurse suggests that perhaps M doesn't have time in the mornings to eat.

I stupidly begin to argue with the messenger, "She has an hour..." but I cut myself off. It is not the nurse that needs to realize that she has plenty of time. I have met M before. She does not like to eat in the mornings. She never has. In fact, when she was in preschool, her teacher once called to ask me if I fed M breakfast in the morning, because she was always starving at 9:00 am. My answer at the time was, "I try to, but she only eats about two bites before she says she's full."

M is still the same person she was at three years old. She is never hungry in the morning. In Montessori school, M ate when she was hungry. The problem is that traditional schools need to have designated lunch times or students will lose valuable instruction time.

I tell the nurse that I will buy M some Zone bars so that she can shove something into her face before heading to school. The nurse thinks that this is a good idea.

I ask the nurse to please have M come visit her before the end of the day to check her bg again. She had a field hockey game that afternoon, and I didn't want to burden her coaches with a sick, weak, or unstable kid at an away game. The nurse agrees and I hang up.

It was my prep period, so I only had one student in the classroom with me, looking for extra help.

"Is everything okay with M?" she asked. All of my students know about M's type 1.

"Yes," I sigh. "At least it will be."

Mmmm. Breakfast!

Field Hockey and Diabetes

Before I launch into this post, I would like to say that I am so very proud of M for trying field hockey. She loves lacrosse, and decided that she would like to stay conditioned so that she would be in good shape for the high school lacrosse team in the spring. Joining another team so that she could stay in shape seemed an excellent idea.

She had never played field hockey before.

After two weeks, she told the coach that she would like to try the goalie position. The coach assigned her a mentor to show her the ropes, and the following day she was playing goalie for a full Junior Varsity game. WOW! Talk about fearless.

You would think I would have learned all of the coping strategies necessary to deal with her participation in field hockey this fall, after all of the exciting experiences we had last spring in lacrosse.

Well, high school sports are really different from middle school sports.

First of all, in high school, they have practice or a game every day.

This means that M is never home before 5:00 pm on a school night. It also means that two times per week she isn't home before 8:00 pm.

For most parents, this inconvenience means setting aside another plate for dinner, and a grumpy kid trying to get his homework done before 11:00 pm. For many other parents, it means driving forgotten gear to games or packing extra snacks. It also means a lot more laundry and a higher water bill as your teen showers twice every day.

For me, it means all of these things, but it also means not knowing how M is doing that day until she comes home with a headache, or nausea, or battling a low bg that won't go away. All three of these situations occurred during M's first week of school.

Headache- Cause: who knows? Dehydration? Her bg seemed fine, although she didn't test it very often. She is supposed to test it 6 times per day. But, because of the tight schedule during the school day, she managed to test it only once during school, leaving her with tests before school, during lunch, before the game, and after the game/dinner.

Nausea and seemingly ceaseless low- Cause: High bg 437. M "just didn't check" her bg before the game. After the game, that 437 set off a roller coaster for the next 24 hours.

• correct 302
• eat and bolus 258
• bedtime check 198
• 6:00 am 49
• 6:20 am 98
• 8:00 am 62
• 10:00 am 81
• 11:00 am 160 (yea!)
• lunch 215
• 2:00 pm 173
• 7:00 pm 245
• 9:00 pm 181

Sigh.

These are hard-learned lessons for a fourteen-year-old. M is starting to remember how sick diabetes can make one feel. That nausea didn't go away for a long time.

These ups and downs are not as fun as they sound!

For now things are "normal". There are no practices this weekend. Hopefully we can use that time to level her out.

Thinking ahead, maybe we will need to designate another "official" time for her to check her bg during school. Then she might be able to stay on top of her bg levels before they develop into crazy bg swings.

In the meantime, I will try to concentrate on cheering M on during a game, rather than searching for evidence of a diabetic crisis looming on the horizon.

Paranoia

Recently, Joanne blogged about what is known in the DOC as "the thought." Her son is approaching the age at which her daughter was diagnosed with Type 1 diabetes. "The thought" has also been addressed by Kerri, a diabetic mother with a not-quite-two-year-old.

"The thought" plagues every parent that has diabetes, or has a child with diabetes. "The thought" is the idea that perhaps another one of our loved ones will be stricken with this disease.

You see, nearly everyone's Type 1 diabetes diagnosis has a similar story. " I felt sick/ nauseous/ fatigued for two/ three weeks. I was eating/ drinking all of the time. I was also extremely moody. I thought I was just suffering from a bad cold/ going through a growth spurt. After a while, I went/was taken to the doctor, where I found out that I lost 10/ 14 / 20 pounds in those couple of weeks. The doctor tested my blood sugar and it was 470/635/900. I didn't really know what that meant until I found out that a normal person's blood sugar readings are between 80 and 100."

(FYI: M's story is nauseous, fatigued, three weeks, eating, cold and growth spurt, 20 lbs, bg of 635).

But, as you can see, the symptoms of diabetes can easily be misconstrued as a bad cold, mono, or a mild case of the flu. In fact, in ancient times, there was only one way to identify whether someone had diabetes. One had to taste the patient's urine. If it was really sweet, then one knew that the person had diabetes and was going to die within a year or two. (Yikes!)

The point is, the symptoms of diabetes are very similar to those of many other, less life-threatening maladies. A list of such common symptoms can make things a little harrowing for those of us who have gone through the process of Type 1 diagnosis in the past.

Case in point: M has an older brother. Not one full year after M was diagnosed, he started exhibiting these symptoms: fatigue, pallid complexion, unusual thirst, and weight loss.

My mind went right to diabetes.

Now perhaps this seems crazy to a medical professional. After all, M is the ONLY person in my giant extended family with Type 1. The closest relative we could find that had it was my father's cousin's grandson. (What is that, her 17th cousin 7 times removed? I never understood how that worked...). Indeed I wondered if I might be a little paranoid.

But I felt better after talking with Bill.

I asked, "Do you think I'm crazy for thinking that our son could possibly have diabetes?"

I felt so much less crazy when he said this:

"No. I'm thinking that it could be diabetes. Of course we are thinking it could be diabetes. Why wouldn't we?"

Which is one of the many reasons I love this man.

The quick answer was to use May's bg meter on her brother to learn that his bg was normal, which it was. He just had a bad cold. But I will tell you that the 5 seconds of waiting for the result were the longest 5 seconds we had had in a long time.

I see diabetes everywhere. One week my dog seems especially thirsty. Does she have diabetes? I have a student who seems increasingly pale and tired. Does she have diabetes?

It's nerve-wracking.

"The thought" even makes people feel guilty for thinking it, as if by thinking it, we might make it happen.

"The thought" robs people of normalcy.

Well, at least the normalcy you can have while checking, double checking, and triple checking bg levels, adjusting insulin doses, tracking all food consumption, waking up in the middle of the night to make sure your kid is still breathing, etc.

But seriously, with all the punishment that comes with diabetes, it seems that "the thought" just adds insult to injury.

We must rally to find a cure for "the thought".

I don't know if this quite qualifies as a "cure" but maybe it's a start!

Flu shots

As I drive around scouting Back to School sales, I have begun to notice those signs cropping up outside of pharmacies.

Back in my more carefree days, I thought flu shots were for the elderly and infirm.

I have scoffed at flu shots, thinking that they were an unnecessary expense and a hassle. I had heard too many stories about people getting a mild case of the flu from the flu shot, and I thought that I would take my chances with the real flu.

My gambling paid off. My kids had never had neither the shot nor the flu. After 21 years of teaching, I have had the flu twice. Each time it was two horrible days of torture, and then it was over.

What doesn't kill you makes you stronger, right?

But then M was diagnosed with diabetes, and I had to reconsider my relationship with the flu shot. I hated to do it, but she was going to have to get it.

Every year.

Vomiting is just too big a deal when you are diabetic.

Another one of life's choices robbed by diabetes.