Blue Hoop, Grey Ribbon

And another one bites the dust

2010-04-28T00:57:00.000-07:00

It’s been ages since I’ve written here, but I have decided that I need this blog.

Today I ventured to the doctor again. I say ventured because that’s what it feels like – tentatively creeping over to the doctor who wants to go over my bloodwork. Since I’ve never had a doctor call me in for good news, I wasn’t looking forward to the appointment.

The conclusion? Congratulations. At age 33, I have now achieved all three of my family’s cluster of disorders: high cholesterol, hypothyroid, and diabetes. Woo hoo for me.

For the first two years of my daughter’s life, my cholesterol rocked. That kid sucked any and all cholesterol out of my system. However, as she reduced her nursing my cholesterol went up. At the moment my cholesterol would be great if I were a normal person. Just fab. However, my doctor also checked another protein for heart disease risk, and guess what? I win the lottery there too. Thanks, genes. So with diabetes and a strong genetic tendency towards heart disease, I get to try and knock my cholesterol to the basement.

I’m going to try to do this without statins at first. Flusing niacin, here I come. Yay for turning beet red for an hour every night. Flaxseed oil and magnesium are on the plate too. My goal for the next three months: kick the cholesterol into the basement, start running again, and get the A1C to 6 or below once more. It’s around 6.3 at the moment.

Pooh. I want a gene tune up. Scratch that. I want a gene replacement. Mine have holes in them.

Note

2009-09-05T15:46:00.000-07:00

Don’t minimize it, don’t minimize it, don’t minimize it. Did I mention don’t minimize it?

I am so sad. Deeply, deeply sad. Sadder than when I was diagnosed with type 1. Then, I think that the shock outweighed the sadness.

Last week my brother called me at work. He had bloodwork done, and it looks like he could be type 1 as well. Luckily, it seems to be in the early stages.

I’ve been having trouble breathing all week, I’m so stressed. I was supposed to be the only one. I was supposed to be the one who had this. Not my brother, not my sister. I am not at all worried about how he is going to manage this. He’ll do what he does, and he’ll do fine. But I should be the last one. I should take the bullet. It should be me – me – me – not anyone else.

My parents are on vacation for another 10 days, and they won’t know until they get back. My dad’s sister died of this bloody disease, and my parents prayed that we would not get it. We didn’t, as children. That is a blessing to be sure. But we are getting it as adults. So our genes come back to bite us.

Why can’t I cry about this?

It seems like such a non-event. Unless I tell people, most people don’t know that I have diabetes. Some days, I don’t think about it that much either. But some days it runs my life, makes me feel terrible, ruins my sleep, makes me afraid.

Now, I am not asking for a parade here, but stop looking on the bright side. Tell me that you’re sorry. Tell me that it’s hard. Tell me that it sucks when kids get this and when adults get this and when four members of a family over three generations have had it. Tell me that you are appalled that two of them are dead because of it. Tell me that you wish that no one else would ever get this disease because it is so bad and so hard and you’re sorry. Or just give me a hug. That would help.

Lately I’ve been telling people that without insulin I would die. Ms Melodrama. But, there’s insulin, so I am not dead. However, injections are a crude instrument, and your life with diabetes is still not normal, however much it may appear to be so.

I know that I carry it well. But if I were crippled by this disease, if I made it obvious that it is so hard and stressful and physically challenging sometimes, would you understand? I think not. I think that you would say that it was my fault for not managing it correctly. I am sure that there are other diseases that carry such a weight of blame, but I can’t think of them at the moment.

Anyway, I want to cry, and I can’t. I am sure that six months from now, I will feel positive and life will be good. We will all manage. But right now I want to cry. And I almost never cry, perhaps once a year. So doesn’t that tell you how bad this is?

(In)dependence

2009-08-20T11:57:00.000-07:00

The tri organization that I belong to is part of insul(in)dependence. I like puns, so ... good name.

I've been thinking about dependence. My mom worried a lot. My reaction? I'll go out and do the thing that worries you, I just won't tell, so you won't worry.

My reaction to diabetes was similar. Putting limits on me? Screw you! I'll go out and run a marathon, I'll show you, fists up....

This works well, sometimes. Certainly it makes life exciting, in a screw you kind of way. Being disobedient can be fun. Wahoo - independence!

But I think that I need to learn how to be dependent too, and I am really bad at that. As I put myself into the hands of many, many doctors, and as I look into my future and see the possibility that some day I might be more dependent and need care, I realize that this is a skill that I need to learn. Possibly the most important skill of all, for me. How to depend on others while still maintaining a strong sense of self-worth and self-direction.

Tri Training

2009-07-09T00:03:00.000-07:00

Great fun. Running around the park trails like a track this morning. I've been running late all week, though, so my run was only about 30 minutes. Ah well, I keep on telling myself that running is still running, even if it could be ... more running.

And the biking. I biked to work and then 10 km more on Monday morning. Lovely stuff, in the rain. I love biking in the rain.

The swimming? Not so much. I was having up and down, up and down, up and down blood sugars and every time I decided to go swimming I thought the better of it. Detaching from my pump and my meter in times like those times is just not a logical option. I need to work on having fewer of those times or figure out WHEN the heck I can go swimming without making my blood sugar go nuts. Maybe in my sleep? There's a thought.

And for my tri training, biking, sustainably moving friends! A lovely contest for a cargo bike! Now carrying two kids up a hill: that's good training.

Can't get the link to work? Try:
MADSEN Cargo Bikes

Green D - A wink to Mama

2009-06-16T22:19:00.000-07:00

From a comment on one of my previous posts, a nod to those who are ready to judge, particularly about the lack of greenness of chronic illness. Sustainable chronic illness, a whole new realm of environmental activism! Sounds exciting?

Seriously, though - I have considered it. I am an environmental educator, after all. And the fact that my pump only takes standard batteries that don't recharge? That sucks. Apparently the pump doesn't recognize that the batteries work unless they have a complete charge, and only disposables appear to have a full charge.

So I purchase disposable batteries, and a lot of them. My sensor alarms drain battery power like you wouldn't believe. What do I do? I put the batteries into the hazardous waste container in our church, so they don't go into the landfill. I'm investigating the new Enviromax batteries that they have at health food stores, though I expect that they'll generally be a little more expensive than the current ones that I use. But not by much, surprisingly.

And how about this super funky idea? Using the body's energy to power the extra parts that some of us need to live? Wow. This could be the basis of a pump could be implanted, a closed loop system.

What else? Pump supplies come in major packaging. Some is paper, easy to recycle. Our community has a recycling day once a month, and at the moment I am saving the weird little packages to give to the people who collect weird little packages for recycling.

My current pet peeve? Fed Ex-ing supplies. Yes, sometimes it's an emergency, and I'm all for sending my goodies on a quick trip on the plane. But an extra part that I might need for my pump someday? Not so much. Let us make a choice how we want things shipped.

And yes, my insulin. I'm sure it's a fabulous concoction of stuff derived through mad scientist-like experiments, combined with some really great preservatives. Ick. But you know, it keeps me alive, and I am grateful for that. I know that there are animal insulins out there that are less removed what's natural, but I find that the system I use right now works for me most of the time, so I'm sticking to it. Preservatives be danged. Genetically-modified mad scientist cackling be danged. Fingers in ears. La la la.

Let's not forget self-forgiveness. If I can eat local most of the time but eat avocadoes some of the time, I can forgive myself for using disposable batteries to power my existance.

The other rant

2009-06-12T23:10:00.000-07:00

Some days, I've had it with doctors. I love my new health care team, but honestly, every time I go to see one, I head off into a new realm of worry. First it's my feet. Then my thyroid. Then my cholesterol. Then my cholesterol's actually not too bad. And my thyroid is actually somewhat ok. And my feet are probably damaged from running, not diabetes. Life is good. Then I have another appointment.

Like the other day. I went to the opthamologist, who asked me how my blood sugar control is. Now, it's been difficult due to seasonal allergies, so that is what I told him. He told me I should keep my cholesterol down, due to a comment by my GP. The comment by the GP is actually based on a conversation I had with her in which we concluded that my lousy cholesterol of last year was caused by excessive quantities of Cornish Pasties eaten during a trip to England. I shudder to think about the cholesterol levels of the average pasty-eating Brit.

Actually, my cholesterol is ok. Not fabulous, but ok. However, she noted in my chart that we had a discussion about it, therefore the opthamologist tells me sternly to control my blood sugar and my cholesterol...and I have to explain the above and sound like a rambling, excuse-making, non-compliant person.

I get tired of being scolded for something new every time I see a new doctor. It's tiring. It uses up my mental energy. And you know, they should try living with serious allergies, hormones, and diabetes. Sure, it's easy to scold someone and tell them to be perfect. But perfection isn't possible with this disease, at least not for me. And telling me that I fail to be perfect at every turn isn't really all that helpful. Support, empathy, and a small amount of understanding would be a good alternative.

Choice

2009-06-12T23:06:00.000-07:00

A couple of pent up rants from the last few weeks.

Since I hang out with a relatively crunchy crowd, I knew that it was only a matter of time before someone told me that it is not good to have radio waves and batteries next to your body all the time. Electromagnetic fields and all that.

So, it finally happened. And I was crochety. It's hard to explain to someone that sometimes there isn't the luxury of choice when you have a chronic illness. Yes, I could go off the pump and the sensor. However, that would mean much worse control than I have at the moment. Fewer electromagnetic fields messing me up, more blood sugar agony messing me up.

So I choose the technology that comes with the batteries and the radio waves, because I've determined that it's what is best for me in the long run. I could be wrong. Sometimes, it's all about choosing the least bad option. Unfortunately. And that's something that healthy people don't necessarily understand.

Thank you

2009-05-18T17:43:00.000-07:00

I've been sick on and off since January - mostly on. Although I did have those nice six weeks of allergies when I wasn't actually sick sick, just feeling crummy.

Two weeks ago I had no voice and had to stay home for the week. Now I have an obnoxious head cold that caused me no end of lost sleep last night.

You know what? I'm feeling grateful. When I'm healthy and feeling good, which is the odd day here and there - boy, I feel good. I put the feel good into feeling good. And when I'm sick, which is the norm these days, I'm still grateful - for my home, my garden, my family (not necessarily in that order). Oh, and ice cream. I am very grateful for chocolate ice cream.

I'm grateful that I can lose track of my daughter at church or around our neighborhood and feel like she's in good hands. I love it that so many people are working on the things that I feel are important in life. I love it that I can harvest rhubarb from my garden. I love it that when I feel good, I don't take it for granted.

The rule of thirds

2009-04-05T16:47:00.001-07:00

There seem to be many rules in diabetes management. The biggest one is that once you know the rules, they no longer work.

I've been very, very good lately. I'm trying to restrict my carbs to the level that works for me. I know where this is, I just don't always like doing it. I hear about people on the Atkins and Bernstein diets who say that their blood sugar is under fabulous control almost all the time. I'm not doing Atkins here, but I really doubt whether that would work for me.

You see, I've figured out that for me, blood sugar is only 1/3 about food. If I control the food, that leaves 2/3 left for general wonkiness.

Another 1/3 of my blood sugar control is about monthly hormone shifts. I've got those down, though they do require constant vigilance and management. I do understand them, though.

The last 1/3 is the wild card. This includes the impact of exercise in the moment, the long term impacts of exercise, stress, illness, site failures, tubing bubbles, insulin weirdness, seasonal allergies (a huge one right now) and the influence of the conjunction of the planets. Or something. Even if I have the first 2/3 of the blood sugar management sorted out, the last third sneaks up on me. Like now. Eating well, not at any particularly awful time of the month, and I've got alder pollen. I'm running a 200% basal these days and still making corrections. Yummy.

I wonder and shake my head in amazement at those with diabetes who manage to keep their blood sugar flat most of the time. Maybe they're all post-menopausal women (or men) who have no allergies, never experience stress or illness (or don't have a three year old in preschool) and lead a very predictable life? Methinks not. Anyway, I gape and I wonder and I applaud. And I also applaud those who struggle with blood sugar that's out of control, and I don't judge. Because sometimes that last third comes to bite you, and there's very little you can do about it.

For every season...

2009-03-13T20:21:00.000-07:00

I'm becoming more accepting of the seasons in my life.

The last few years, I've been balancing writing, crafts, exercise, volunteer work, and general down time. In the winter, I beat myself up for not exercising. In the summer, I beat myself up about not knitting. Uh huh. Not knitting.

Anyway, I've decided that I have a dormant period. It's called winter. Yes, I toboggan and walk in the snow, and I am comfortable running in the rain in the fall and the spring. But when winter comes with its dark mornings and evenings, I enjoy quiet time at home in the evenings. I have no desire to go out and run in the dark, cold, and ice. Yes, I know that's what treadmills are for, but to be honest I'd prefer to spend those long, dark evenings knitting, felting, and sewing!

In the summer I have no inclination to craft. I'm outside in my garden, I'm running, and I'm swimming in the pool in our townhouse complex. I don't have an urge to do Christmas crafting or other crafting. At all. While dedicated crafters are working on their Christmas goodies, I'm harvesting mizuna or running in the local forests.

Balance is often about pursuing what makes me joyful in that moment instead of carefully carrying everything at the same time.

2009-03-11T11:26:00.000-07:00

So apparently my feet aren't all that touchy-feely anymore. They've always been dodgy, even pre-diabetes, so I'm not surprised. I need to take care that little one doesn't run over them with trucks, that I don't get blisters, etc.

Apparently acupuncture has good results for nerve damage in feet and so does cayenne cream. I think that's what it is. I can't spell the actual name at the moment. Also going to try alpha-lipoic acid. It's good that I'm getting some contract work so that I can actually afford these supplements!

I must avoid visions of me with no feet. I'm going to cut down on my carbs again and try to reduce my A1C slightly, while keeping to few lows. Sigh. That is hard. I'm pretty insulin sensitive, so it's hard to live on the lower side of normal because any missteps and I end up in the basement, blood sugar wise.

On the plus side, it is sunny, slightly snowy, and very cool, and we're going for a hike!

Thought of the Day

2009-02-28T09:23:00.000-08:00

I am not afraid of what might come in the future.
I am sensible instead. I manage things. I organize life so it's easier to manage diabetes. And I forgive myself a lot.

I don't fear, and I don't worry. Why would I spend my precious energy doing that, when I could be living? As things come, I will deal with them. I will grieve, I will be angry, and then I will manage them as a part of life, whatever that life might look like.

I am not afraid.

2009-02-12T19:23:00.000-08:00

So I got the synthroid and felt a lot, lot, lot better for about 5 days. I had energy coursing through my body. It was fabulous. Felt like I was on some illicit drug.

And then my darling daughter got the flu. She bounced back in a couple of days. Me, I've had it for a week now and it is only today that I've started to feel like one of the living again.

Illness with diabetes is never fun. On Sunday I woke up with high ketones, zero energy, spent the whole day sipping water and staring blankly at the wall. Now, high ketones would usually call for a emergency visit since I NEVER get them, but since I'd also been eating almost nothing for three days I thought that I would give eating a try.

So, three blood sugar excursions into the high teens later, I had three successful meals and mild ketones. Success? Um, perhaps.

This illness has made me realize how ill-prepared our house is for me to get sick. Particularly in the food department. Dh's mom kindly went off and got us a ton of food so we didn't starve, but in high bg land, banana bread and mueslix just can't happen. Actually, they don't happen in my regular life either. Step one after this: have a lot of food on hand that I can prepare and eat.

I went to the clinic early this week to make sure my cough wasn't anything more dire. I just...couldn't breathe, nothing serious. I know that the receptionist was having a bad day, or perhaps she dislikes sick people. However, when asked to list my medications and sensitivities, yes, I have a list longer than four. And no, you don't need to look at me like that. You know. Like that. Next time I come in with my list of ailments, medications, and "no I can't take that's," I will explain sadly, calmly and quietly, "Yes, I never thought that my life of hard drugs would come knocking so early, but let this be a lesson..."And then I will sit down, pull out my knitting and my tea, and whistle.

Ok, I can see why you might not like sick people. ;-)

And Now for Something Completely Different (But somehow similar)

2009-01-31T09:51:00.000-08:00

A man with three...
No.

So I have a doctor's appointment this afternoon. An urgent weekend one. Fun times. Apparently my thyroid is whacked. Might explain a few things: depression, hair loss, foggy brain, tiredness, difficulty sleeping, slight shortness of breath.

I am upset about this. When will this autoimmune insanity stop? Why can't my body stop attacking itself? Doesn't it realize that I kind of need these organs? Organ functioning is a useful thing, hmm?

The good sides of this: would also explain my elevated cholesterol (thyroid wackiness will do that to cholesterol), and my horrible blood sugars of the last weeks (autoimmune attack).

It's been coming. I was subclinical for some time, enlarged thyroid. I knew it was going to happen. It's just...I don't want to deal with it. Once I was healthy. That was four years ago.

Dang it, I was the person who ground her own bread flour in grade eight and recycled and ate organic and used nontoxic cleaners before just about anyone else. Yeah, I know that doesn't earn me any cosmic brownie points when it comes to my health, but when I have done so many things right...why do things go so wrong?

Acceptance

2009-01-26T06:33:00.000-08:00

We were at a dinner party. One person said, "So since all of these people you know are getting pregnant, does that make you really want to get pregnant?"

No more than usual.

Someone else chimed in, "Yes, I hear that having a second pregnancy can be really good for peoples' diabetes."

Well, since type one diabetes is not curable, I doubt it would work for me.

Arg. I walked out of the room.

First off, yes, I do want another child. My dh does not. I would be willing to go through pregnancy with diabetes. I think that I have coping strategies for sleep deprivation, though those would likely go out the window when I was actually seriously sleep deprived. But you know what? The decision is not because of my health. I'm not willing to bring a child into a relationship where one partner absolutely does not want that child. And that partner who doesn't want one? Despite the fact that I have diabetes, that partner is NOT ME.

Let's deconstruct. Curing diabetes with pregnancy. Pregnancy is challenging with type one. It doesn't improve things. How can something that pushes your body's systems improve things? And breastfeeding another...while it does lower blood sugar, from past experience I know that all night breastfeeding can also lead to severe low blood sugar.

The main thing that drives me crazy about these comments is the desire to cure me. People with any chronic illness work on accepting it. That's all you can do. Yes, you can work to manage it and work and hope for a cure. But a lot of this is about acceptance. It really is. And you know, those people with the good intentions who pat you on the shoulder and tell you that it's not so bad, there will be a cure next year? They don't help.

An imaginary cure is useful for people. It provides a way to sideline the situation. You will be cured. You are cured. Everything is fine. I've solved the problem. You're no longer dealing with this. Let's move on now.

Carefully-honed acceptance is a fine, fine thing. It's not a default emotional position. It's something I've worked on and thought through. Let it be.

Not so bloggy lately

2008-12-30T23:08:00.000-08:00

For some reason, over the solstice and Christmas season I came down with a bad case of the midlife meltdown. Current obsessions include the upcoming climate crisis and how this is going to impact all of our lives. I'm also railing quite a bit against any things in my life that seem to enforce a structure on me...or limit my options in any way.

Despite an absolutely grotty day of blood sugar, I'm finding the day to day grind of diabetes to be somewhat mindless. My resolution is to test more often to cross-check my sensor, though. Sometimes it is bang on, other times it's rather off. I used to test 15 times a day with no sensor, and I'd like to get back at at least 8.

Anyway, with all of my current survivalist and permaculture tendencies, I'm opening the application process for an insulin tree. I figure, I've got to be able to grow it in my backyard if I can't grow it in my pancreas, right? Maybe I can grow a pancreas vine while I'm at it.

Must go to sleep, I think.

Busy, busy and bananas

2008-12-08T23:06:00.000-08:00

The last couple of weeks have been crazy busy.

We measured the giant diabetes ribbon that I'm hoping to turn into a world record. 195 metres of it. Yee haw. The world's largest grey draft catcher, as someone kindly pointed out. I'm dismantling it and turning into smaller diabetes ribbons (smaller being ... oh, 8 feet tall when looped into a ribbon). These will hopefully go on display at different events across Canada. This was the weirdest thing I've ever done in public: measuring a giant stuffed knitted thing in the town square with the mayor on a rainy November day. I don't know if my husband will ever get over the public embarassment!

It's one of those times of the month (there are a couple!), and my blood sugar has been bordering on low all week. I got so sick of it today that I - get this - ate a banana. With no insulin. Hah! What an act of defiance! Taking a stand, I am! Or...something. It worked, anyway. Finally my blood sugar went up, even a little high.

I'm doing my annual cookie baking too. I've been doing this for 16 years now. I've baked my way through university finals and papers, writing my master's degree, travel plans, morning sickness, diabetes, a newborn, and now I'm baking with my preschooler. Sniff, sniff. My mom wondered why I didn't give up the bleeping baking when I got diabetes. Well, it's not like I eat ALL of it! I don't always like the labor involved, but I love seeing all of those baskets of cookies ready to head off to their future homes and tummies. People like cookies. I'm one of those people. And diabetes be fill-in-the-blanked, I am going to eat a couple now and then. Just keep me away from the fudge, please!

Life in pictures

2008-11-23T20:49:00.001-08:00

Once upon a time, I was a geography student. And one of my professors talked about how tourists like to frame reality the way they want to see it. We take photos that avoid the garbage lying on the ground near the pyramids, we take the picture of the pyramid.

I've been framing a few photos today, and there is one that I really like. It was done this spring and dd and I are hugging each other. The only thing is that since I am holding dd, my medic alert bracelet hangs down from my wrist. It's really obvious because it is in the centre of the photo.

So I have not framed this photo. In fact, I didn't even enlarge it, even though it's one of my favourites. And no, I can't crop it.

Why should I want to crop it? Why should I want to avoid it? What's so wrong and ugly about this bracelet? If it were any other bracelet, it would just be something that I was wearing, right?

I suppose that I am still trying to edit diabetes from my relationship with dd. In some ways, it's an integral part of that relationship. Goodness, we did go to run a marathon in Iceland for the Diabetes Association this summer...and spend a year fundraising for it. And she is certainly aware that I must stop and test, stop and eat, stop and count my carbs.

But my attitude has been that life is normal, life continues as normal with slight modifications that may continue to be modified over time, as needed.

And perhaps my bracelet is too much of a reminder of the harder side of normal. The thing that I don't want hanging between us.

Not quite perfect

2008-11-18T23:34:00.000-08:00

I'm relishing imperfection today. Or rather, I am having a lot of it so I may as well enjoy it.

My pump site failed after dinner and I didn't realize it before I went swimming, hence the late bedtime for me tonight. New site, extra insulin shot, blood sugar crashing down, more jellybeans, go to bed with fingers crossed and sensor on.

After swimming but before site change, I took out the little felted animals, plants, and gnomes I am making for an advent calendar winter scene. As I am also coordinating the measuring of a giant diabetes ribbon and helping with a large human rights event that involves 60 children and working and helping at the preschool and trying to write some articles and ... I should be felting gnomes, right?

My gnomes are pretty feeble, but you know, I don't care. I think that this attitude is starting to catch up to me in some areas of my life, but in general I do a fairly decent job at most things.

I think that parenting and having diabetes have taught me the value of good enough. For years I did not feel good enough for anything, even though I excelled at most things I did. Now I excel at few things I do, but I feel a lot better about them. Other people will forgive me. I'll forgive myself. I'm glad. Even if my gnomes are pretty lousy.

Oh, dear...

2008-11-04T21:59:00.000-08:00

We visited the in-laws for dinner the other night, and MIL mentioned that someone dh knows had "come down with" type 1 diabetes in his twenties. And that his child has also developed it.

Full stop.

Where do I go from there, then?

Honestly...and this is totally a personal choice, but had I developed type 1 before I had a child, I would have pushed dh to adopt. I have always wanted to adopt anyway, and that would have been the final straw. While it's nifty to see our genes expressed in a child, I am more interested in being a parent than I am in being a biological parent.

Now I know that women with type 1 who have a child in their late twenties have a fairly low statistical likelihood of having a child who develops type 1. It seems to be more strongly inherited from the male line (it is in my case). But nonetheless, knowing that I have some rocking genes and some awful ones...the awful ones would nix the idea of biological reproduction for me.

I'm rarely a worrier, but I'm sure that one of the worst fears of any parent with diabetes is to have a child with the same disorder, to pass your junk on to the next generation. The guilt. Yes, life with diabetes is certainly worth living, but life without diabetes has a lot more pizza and worry-free nights.

So why the comment by MIL? An out of the blue fact? A fear? I don't know. But I can't stand being reminded that I have a crappy disease and that I could have passed it on to my kid.

There's a lot of fear that goes with diabetes, and although I tend to piddle through life trying to ignore it, sometimes I think that people think that means that there is no fear. That a cure is just around the corner, and that I can do whatever I'd like without thinking and without worry. I certainly don't want to milk my diabetes, but sometimes living well with it can make it seem like something minimal, something that would be easy for a child to have.

And it's not easy. It's real life for a lot of people, but that doesn't make it easy.

Hey, at least dd didn't get my flat feet with pre-made bunions. Sigh.

Do I fail now?

2008-10-29T20:48:00.000-07:00

When I was diagnosed, I got my A1C down into the 5's really quickly. I've always been a perfectionist. But perfectionism has its down side. I had no leeway. I'd go low at the drop of a hat. I started to lose my hypo awareness, and that is a lifesaver. What's the point of living with no complications if I go from a hypo in the middle of the night?

So I started to back off. Luckily for me, my hypo awareness comes back as easily as it goes. My A1C went up a little, still in the 5's. My wild blood sugar swings and severe lows stablized a bit.

Then, after a few scary lows in the middle of the night, I vowed that I would pay out of pocket for sensors. I love my sensor. I love the feeling that I have a fall-back, that I know how my blood sugar is trending.

My sensor has also allowed me to be aggressive with corrections, to eat more normally (within reason), and to exercise in a planned and well-structured way. It's also raised my A1C to 6, for the last 9 months.

People with type 1 are supposed to keep an A1C under 7 to reduce the risk of complications. The mid-5's are considered too low by many doctors - unless you're able to do this without a lot of major lows. I am very insulin-sensitive, and stress, hormones and exercise mess with my blood sugar a lot. It's hard to achieve the mid-5's with few lows.

So I've worked with the sensor to shift my blood sugar up a little, to reduce extreme lows and highs. Standard deviation of your blood sugar is almost as important as your A1C, apparently. The smaller the swings, the better.

On the sensor, I swing less but I have a higher average. And I don't like it. In the 5's I felt so perfect, like I'd figured it all out and would have diabetes beat. At 6, I feel like one of many imperfect people, even though I know it's more healthy and my doctors commend me on my excellent control.

I guess that my inner perfectionist from high school - the gal who got straight A's - she hasn't been banished after all. I'll continue to be sensible and work on stablizing blood sugar, but dang...wouldn't I like to see those 5's again.

Icky ick ick ick

2008-10-29T20:43:00.000-07:00

I am getting so sick of jellybeans. Use the dratted things to tweak my blood sugar when I'm out and about. They keep well, work almost instantly, and they don't taste that bad.

But boy, I am sick of them. And I can't bear to think of the percentage of my daily caloric intake that is ... jellybeans. Organic food. Free-range food. Local food and ... jellybeans.

I've switched to organic raisins for a while, but they travel poorly and for some reason, they just don't work fast enough for me. I've tried dates, raisins, juice as alternatives. Only sugary candy has ever seemed to work, and jellybeans are a somewhat tasty and cheap sugary candy. But blech.

Juice works, but those little tetra packs are expensive. And I can't stand the garbage/recycling I am creating.

I'm not willing to give up the freedom to choose to go for a spontaneous walk, so here I am, eating jellybeans with the best of them.

Blech.

The little movie that could

2008-10-29T19:21:00.000-07:00

Love, love, love this youtube video. I'm archiving it here so that I can finally delete it from my inbox. Stick with it until the end.

Oh, and...

2008-10-26T21:22:00.000-07:00

Can I just mention that hearing my three-year-old take her toy pump, push buttons, and say that she is giving herself insulin somewhat creeps me out?

I know that she's grown up with this, but I wish that insulin was not a word in her vocabulary.

Swimming and other scares

2008-10-26T21:14:00.000-07:00

I made the night of the lifeguard last Tuesday night.
No, I didn't nearly drown or anything. Just mentioned to her as I left that I am going to be swimming every Tuesday night and that I have type 1 diabetes. I think that I saw her Tuesday nights go down the tubes. Ah, well.

Overall, swimming is working. I'm able to sneak out after dd is asleep, remove my pump, check BG, get into swimsuit, drive 10 minutes, swim for 45, wash, rinse, and do everything backwards.

My main barrier to swimming was the fact that my bleeping pump is not waterproof. I don't want to leave it in the pool locker. It looks like a nice little device for someone to steal. I don't particularly enjoy leaving it on my bag on the pool deck, either. So I leave it at home.

The only reason I can do this is because my insulin from dinner is still working, so there's no chance of my going extremely high while I'm at the pool. It's when I get home that I'm apt to hit 200+. So I've been bolusing with a needle right after I get out. When I get home, BG is already heading down.

Except that the other night I whipped out the needle a bit too quickly, just as someone walked into the room. I wandered into the change room to do my shot.

Yeah, I know, I should proudly wave my needle about and shout "I have diabetes! Hear me roar!" above the din in the pool. But honestly, the prospect of explaining said needle at 10 pm when I'm trying to get home to bed and to my kid is just too much to want to deal with.

Everyone Else

2008-10-19T22:32:00.000-07:00

I don't want to be like everyone else.

This in response to a comment on an email list I'm on - are type 1 diabetic folks like everyone else? The point was that people with type 1 are NOT like everyone else - they may have kidney disease, poor eyesight, mental difficulties from blood sugar excursions.

I think that this is an important response to the "people with diseases and disabilities are just like all of the normal people" argument. Of course I'm a normal person. I parent my child, I go to work, I make food, I eat food, I agonize over personal relationships, I attempt to balance my accounts and still have some treats in my life.

Yes, I will likely run into diabetes-related complications that make my life more complex. I do now. When I have to sit down on the floor of the library with my daughter and read books because I'll fall over if I stand up, that's a complication of diabetes right there. And when she yells at me to get up because she doesn't want to sit there - and I explain that we have to wait - and everyone looks at me like I'm a nut - that's a complication right there too. And when I need to say that we can't go for an unplanned walk right after breakfast because she said that she didn't want to and I've already taken my insulin - that's another complication.

But I digress entirely. Ranty rant rant.

What I meant to say was that having diabetes has made me recognize that complications ARE normal. Most people I know have complications. One had breast cancer, another has MS. Another is a caregiver for a spouse, another has a spouse who's left the family struggling. All of these things make our lives more challenging and more complex.

Complications are a huge part of most peoples' lives. Sure, some of us might live charmed lives. But as we grow older, our health and our family situation and our lives in general tend to create situations that can be mentally and physically painful.

So despite the fact that I don't want to be a normal person, I am. Complexity is normal, and type 1 diabetes is just one part of the complexity is my life. I accept that, as I accept that others have their own complications - and I hope that they support me through mine as I try to support them through theirs.

Eye Spy

2008-10-18T23:01:00.001-07:00

My daughter was making a pretend bed the other day, and she made sure that she laid out her jellybeans. We cosleep, and yes...there are jellybeans beside my bed.

Other exciting goodies beside the bed include:
* Said jellybeans, for middle of the night lows.
* Extra glasses that I wear at night so I can see my pump
* Xylitol gum, just in case I can't brush after jellybeans
* Toothbrush and paste
* Extra pump battery and pump site and alcohol wipes, for middle of the night site failures.
* Flashlight, so I can change my pump site in the middle of the night without getting up.
* Test kit (finger poker and metre) so I can cross-check with my sensor or calibrate it at night.

Fun times! A bedside table is definitely on the want list.

Midnight (ok, 3 am) madness

2008-10-11T21:18:00.000-07:00

I'm turning into the person who turns off her alarm clock, rolls over, and forgets about going to work until 10 am.

Except that's what I'm doing with my pump alarms.

My sensor settings are set quite tight, so I deal with a fair number of alarms during the day. At night, when I hear the alarm I wake up, I deal with my blood sugar, I go back to sleep. At least I think I do.

What sometimes happens is that I wake up, I fall back to sleep and I DREAM that I've dealt with my blood sugar. Then I wake up low.

Yikes!

In an effort to outsmart my sleeping self, I now wear tight shirts to bed, stick the pump under the shoulder part of the shirt, and voila - annoying pump alarming next to my ear to wake me up.

Except last night, my site came out as I slept. Without a sensor, I would have woken up vomiting and in DKA. Fun all around. With the sensor, I finally woke to my blood sugar creeping up. Luckily, the site had only been out for about an hour - according to my blood sugar records.

This has never happened before. I suspect that while I vigorously returned the heavy covers to dd, my pump slipped from my shirt and I threw it over dd. She moved, and the site pulled out.

Or did it?

Other option: I knew that I needed to change my site this morning. I set out everything to do it before I went to sleep, so I would remember in the morning (today was a busy day). Could I have possible tried to change my site in my sleep...and woken to a site removed?

Yikes.

Ok, I'm switching my site-changing time to right before dinner. Next step in my plan to outwit myself.

Eyeballs from outer space

2008-10-09T22:48:00.000-07:00

I rarely feel like a freak because of my diabetes. Not that people don't notice the pump - they just think it's a pager/mp3 player with a cool cord.

But dd is in preschool now, and as a parent in a participation preschool, they needed my medical info too.

So what will happen if you have a problem with your diabetes?

Well, I don't know. I have never been so out of it that I've passed out...or couldn't help myself. But if I sit and stare at the wall for a while or fall to the floor, um...check to see if I respond, then call 911.

That's what's on the preschool wall chart. Might sit and stare at wall. And everyone gets to see it all of the time. Freakity freak freak.

Of course, I might just sit and stare at the wall on a tired day, just to see what everyone does. Grin.

Things I've been thinking about

2008-10-09T22:43:00.000-07:00

Ok, so maybe I do need to blog after all.

Things I have been working on:
Actually hearing the bleeping (literally bleeping) sensor when I'm asleep. If I can't hear the low alarm, what's the point of the sensor system?

If my pump is in my pocket or in the bed, there is NO WAY I can hear it.

Now I sleep on my back with the pump tucked into a shirt, close to my shoulder and close to my ear. It still catches the signal from the sensor on my thigh, but it's close enough to my ear that I can hear it at night.

The weird things we do.

On another note:
Yesterday dd and I were playing "hospital" in the front area. Well, I was unwillingly being forced into playing hospital, more like it.

Her pump broke.

You see, I've always told dd that she has a pump inside her. My pump inside me doesn't work, so I have a pump outside me.

So she had to go to the hospital and have a poke, and then we decided that she needed a pump outside her. Much was made of the potential colour of the pump, and she finally decided that if it couldn't be green or red it was going to be purple.

And so goes our odd world we've created.

Pizza - will it come back to bite me?

2008-10-09T22:38:00.000-07:00

Corny, corny.

After three years of random acts of pizza and regret, I think...I hope...that I may have learned how to live with pizza at dinner time.

This summer, we visited friends and got pizza for dinner. It was GOOD pizza. I can't eat 1 slice of good pizza. That is pizza torture. I have to eat at least two slices, maybe three. But I am afraid. Afraid of the evils of the low blood sugar right after eating, afraid of the great sneaky rise in blood sugar in the wee hours of the morning.

My official sources tell me that pizza slices have 25-35 carbs per slices. That is hooey. So I bolused 40-50 grams per slices, with a grand total of 150 grams of carbs for the meal. Ack!

I usually divide my dinner insulin 50/50 over three hours in a dual wave bolus. This is one of the reasons I need a pump - to make sure I don't go crushingly low right after dinner.

So for pizza, I divided it by 35/65 over four hours, corrected a little at two hours, and sailed through the night with a minor correction at 3 am.

Repeatable?

I did repeat it once again over the summer, to similar success. Now, 150g of carbs is still a whack-o-carbs to be going to bed on. I wouldn't do it without my sensor to guide me and warn me to pending lows. But it did work - twice - and I am considering eating pizza again.

Now ain't that a radical thought?

2008-10-08T22:53:00.000-07:00

Lonely, so lonely

2008-10-08T22:44:00.000-07:00

Yep, my blog was lonely for a good long time. In fact, I abandoned it. But popular demand (ok, two people asking) has led to the rebirth of the blog. I don't promise any wildly great writing, though, ok?

So the marathon went...slowly! Don't ask. It was wet, it was cold, it was very wet and very cold. But people who do slow marathons are oh so cool. I chatted with a lot of people, including one woman from Iceland who said that Team Diabetes folk always inspire her. According to her, we're real people who run, not good runners, but just people. Who run. Yep, that's me.

Finishing the marathon - I was elated, but sadly my finishing pics don't show that. I didn't see the camera until it was too late. My favourite one was taken in my sexy garbage bag (rain gear) with dd. She missed my finish - she'd been waiting for 20 minutes for me, and she needed to pee. Sigh. After the marathon we partied hard for two hours on the streets, going around to all of the different artsy culture night street events. Then we collapsed, very, very tired.

So now I'm back. I did the Coho Run in September in a rather decent time for me, 1:22 for 14 km. I've slacked off the last couple of weeks, and I need to get those long runs in on the weekends. I'm attempting to work biking and swimming into the program, but the swimming freaks me out. I love, love, love swimming. I have to take off my pump to do it, though, and that makes me a tad neurotic. And the only time I can swim is after dd is asleep, which means that I swim while dinner time insulin is still in my system. Which means that I am going to have to drink a bleeping great lot of juice just to go for a swim, then get neurotic that I'm still going to go low. Loads of fun. Wonder why I am less than motivated.

My current thought: eggs for dinner. Every Tuesday we will eat low carb omlettes. Then I will have almost no insulin going on from dinner, and so I will have to drink less juice, and life will be happpppppeeeeee. Right? Hmmmmmm.

See, no one should have invited me back to this here blogosphere again. Ranty ranty rant.

Grin.

Good night.

Creative commuting

2008-01-22T08:39:00.000-08:00

Ah, the snow, the ice, the dark. Winter. Luckily, I got some ice grippers for my shoes for Christmas. It would not be a good thing to run or walk along and thwack myself on the head.

I'm having to get creative to find time to run when it isn't dark, and I'm enjoying running as a form of creative commuting these days. Last week, I ran with the jogging stroller to our local shopping strip to bring some children's clothes in for consignment. On the weekend, I ran down through our suburban streets into a local forest, down a long gravel road, through a cemetery to a meeting on sustainability in our community. I thought that it was a great fit all around. Nutty running through snow person meets sustainable commuter.

And you know what? It often takes less time than the bus....

Tis the season?

2007-12-16T20:45:00.000-08:00

Oh my. Winter running.
Arg. Winter running.

Why did I choose to live in a little part of the city that is cold and frosty and snowy far beyond anything else?

And why did I structure all of my short runs around this area?

Well, because it's beautiful, and because there are great running trails in the spring, summer and fall.

Today I finally got out for a longer run, but I have decided that I need to head lower down to run at the moment, which means that I need to run sans jogging stroller and sans kiddo. This means that I need to find a time to run instead of having it slide nicely into my commute home.

Ah well, the winter solstice is upon us. Soon the days will get longer and I will be able to see where I'm going...and what I'm going to slip on!

Methinks some cross training in the gym might be in order. I've also decided to lower my expectations for December and January. I'm aiming for maintaining rather than increasing my run distance. Tis the season for ice and snow, after all.

Now...will I be ready for that 1/2 marathon in February? Stay tuned.

Yahoo! It's...International Diabetes Day!

2007-11-14T14:20:00.000-08:00

Well, maybe not yahoo.
But happy International Diabetes Day anyway.
Downtown, people are getting together to make giant blue human circles - the international diabetes symbol.

Me, I'm getting ready to knit my piece of the world's largest knitted sculpture - a diabetes awareness ribbon. Yep, it's finally happening. Michaels is donating a whack of grey yarn, and the word is starting to spread. I'm even getting email from people I don't know!

This should be fun. I think that when it's done - all 200 and some-odd feet of it - we'll wrap it as far as it will go around the library. Now that's a yahoo!

To celebrate diabetes day, my body and my pump alarms kept me up until 3 am last night with lowish blood sugar. Thank goodness for my sensor. I did go rather low at one point, but it wasn't as bad as it could have been. I tend to wake from a strange dream to discover myself shaking, but I get afraid that one day my overnight low WON'T wake me up.

This PMS thing is killing me. Now that my periods are back, and irregular at that, I never know when I'm going to hit a period of PMS-y high blood sugar or plummet into a nasty low. It's a whole new roller coaster. How many years are there until they go away? Oh yeah, there's menopause to go through before that, and I hear that's a doozy too.

Ah, well.

Gold-plated security blankies

2007-10-23T20:28:00.000-07:00

I am having a love affair with my sensors.

They're little devices that I stick into my thigh with a nice, big-gauge needle.
And I love them to bits.

They tell my pump what's going on with my blood sugar, and with a little click of a button I can see blood sugar trends and get alarms if I am going low or high.

They're not perfect, and each new one only lasts me about 6 days. The first day is a training day for the sensor, and I don't trust it that day. The next days have been rock solid so far. I used the previous sensor technology, with a giant hanging transmitter that looked an awful lot like a computer mouse. Hated it. It dragged on the sensor and my readings were terribly inaccurate. This one looks like a seashell, it's tiny, and it works so steadily.

They've seen me through 3 weeks of horrible blood sugar, three weeks of the worst blood sugar so far. I've made corrections of multiple units of insulin, trying to send myself flying downwards. It didn't work, by the way. My body was going through some weirdness. Last night, the sensor saw me through multiple slight low blood sugars that would have ended me in unconsciousness had I not woken from my pump's alarms. Evidently the weirdness is now ending, and I'm going back to my original basal rates. And the sensor can tell me this - even if it wakes me every hour to tell me, that's better than not waking at all.

Gotta love em.

The problem? They are danged expensive, and not covered by insurance. They're about $200 for the month. Little gold-plated security blankets, they are. I just shelled out for next month's quota. I just need to find some more consulting work, and I'm all set. Right. Easier said than done!

Beware the muscular bottom

2007-10-16T20:46:00.000-07:00

Caution - far too much information below.

Ok, so I started running in May. I have always used a certain type of pump site on my -ahem -rear. It works for me. Or so it seemed.

The last 2 weeks I've had TERRIBLE blood sugar. It was totally random, and I blamed it on stress, PMS, eating at restaurants twice, Thanksgiving (I'm in Canada), everything.

I was awake for ages the last 2 nights, as my insulin requirements to keep me under 300 were more than double my usual insulin. I had visions of using hundreds of units a day, as opposed to my usual 30 or so.

This morning at 4 am I figured it out. My muscles in my bottom have gotten larger from running, and my fat layer is thinner. The Quicksets sometimes work, sometimes not. I'm going to have to switch to another type of pump site (Silhouettes) in my rear (already use them in my tummy).

I used a Silhouette all day, and everything was normal - finally!

This is my official public service announcement for any pumper starting an exercise program: beware the muscular bottom!

The synergistic effect of pizza on blood glucose levels. Or is it the phases of the moon?

2007-10-03T22:33:00.001-07:00

So. Pizza. Not the reason that my blood sugar was crazy today by any means. No, that was because my insulin reservoir leaked and my site failed. Auuugggghhh! Luckily, I have a backup stash of my "drugs" and my "supplies" at work, so I was able to fix both things and introduce a program on a blood sugar of 12ish. Can you say fuzzy brain?

But pizza. It is the great mystery of diabetes.
Since I developed diabetes, I have limited myself to 1 slice of homemade pizza at a time. I take too much insulin for it. I check my blood sugar regularly and through the night. Sometimes I can manage it, sometimes I can't. I really, really like pizza, but I am beginning to think that it is just TOO MUCH WORK.

Yes, pizza has a lot of carbs and fat and protein, all stewing together in a little slice of goodness. Mmmmmmmm, pizza. Oh yes, and the fat and protein are converted to sugar overnight, so they slowly raise your blood sugar.

But why can I eat a slice of toast with cheese and meat, and it doesn't work the same way as pizza? I can have said toast with no problem. But not the pizza. I think that there must be some strange chemical reaction going on. The fat and protein and carbs do a little happy dance and make more fat and protein and carbs than there ever were before.

I've tried homemade pizza pockets made with low carb wraps, and they work ok. But they are not quite the same. I've tried pizza soup. Ditto.

When the good fairy comes to cure diabetes, I've got to say: I'm going out for a HUGE pizza, eating every dripping bit, and then I'm going for a run.

Hah! Eat that, pizza!

Pumping and parenting

2007-09-24T20:39:00.000-07:00

Ok, I am a bad little blogger. I keep on thinking of things to say, then I get sucked into other endeavours on the computer. I've been doing some consulting work (or starting to do so), and it seems to be an interesting way to putter away my limited nap time. Well, my darling daughter's limited nap time (grin).

So, what's up?
Well, said daughter and I ran our first 10k - the Terry Fox Run - last weekend. I think that I finished in under an hour. Pretty good for a banana break (dd's), a couple of blood sugar checks (mine), a water break (both of us), and running the whole thing with a jogging stroller. Hint: That is NOT good for my back. Ouch. And dd ran the last 1/2 kilometre with me. I had to bribe her with the fact that there was a fire truck waiting for us at the other end. She wanted to fall asleep in the stroller instead. I wanted the photo finish, with toddler.

Speaking of toddlers and pumping, that's on my list of blog "to dos". So, here's a shot at it.

Reasons why diabetes and insulin pumping make parenthood more interesting and enjoyable:

1. An old meter makes a most excellent cell phone for a toddler.
2. Pump backlights are PERFECT for checking on sleeping kiddos. Not too bright.
3. It's very interesting to go for a walk, go low, and realize that you've been singing the same song about underwear ten times in a row to your daughter, and enjoying it all of the way.
4. A site insertion device makes a convenient distraction when you're on the phone.
5. Children love to "feed" mama when she needs to tweak her blood sugar. Imagine the genial toddler: I feed mama? Here, mama? More food, mama? Sure.
6. A baby or toddler or (dare I say) preschooler is the BEST 3 am blood sugar checking reminder in the world. Whatever will I do when dd sleeps through the night consistently?

As for the knitting end of things. I had a story in the paper about the wacky knitting of the world's longest awareness ribbon endeavours, and that set off a possible yarn donation and a possible knitting instructor. Looks like we're rocking. The only thing is: stop this train! It's too busy! It's crazy.

The only good thing about all of this crazy life is that it's preventing me from thinking too hard about embarking on another pregnancy...yet.

Run faster! Faster!

2007-09-04T21:25:00.000-07:00

So - I've now started the Learn to Run 10K Faster program. Yesterday I had a great run. I ran a road that took my 45 minutes to do at the beginning. It took me 20 minutes. Yes, I'm still moving at a slooooow pace, but I'm hoping that this program will up my overall speed a bit.

I'm looking forward to my first official run on Sunday, September 16th - the Terry Fox Run. I'm doing 10k in honour of a friend who died of cancer earlier this year.

I also tried out a jogging stroller on the weekend. Whoa. Ok, I was always of the snarky, holier-than-thou opinion that jogging strollers were for yuppies. For shame, for shame. It handles like a dream. The only trick is convincing my two-year-old that it might be interesting to stay in the seat instead of trying to run alongside mama the entire way.

On Trust

2007-08-26T21:49:00.000-07:00

Something inside me is broken. Yeah, I know…it’s my pancreas. But when I was diagnosed with diabetes, something else broke too – my trust in my body.

I used to have survivalist fantasies about the end of the world. With all of my ecological knowledge (hah! Right!), I’d head off into the wilderness and survive on my own. I’d live out my happy hippie dream of living off the land. When you need insulin and you depend on the global medical system to survive, there’s not a hope in heck of that happening. Sure, it was a fantasy, but it gave me trust in the ability of my body to get through anything I could throw at it.

I approached pregnancy the same way. I don’t believe that women are broken. I believe in my body’s capacity to create life and nurture it and give birth to a child. That broke too, because without modern medicine my daughter and I wouldn’t be here.

Now running is starting to give me a bit of that trust back. I still have to use my brain to overcome my body’s challenges, but I am starting to feel like I can do things. Things like run a LONG WAY.

There’s another trick I’m trying too. It’s a mental construct that’s working for me in some respects.

You see, another blogger posted about a young woman who believes that cancer is the body’s failed attempt at self-repair. Our bodies haven’t learned how to regrow damaged parts, but cancer is trying. It’s part of an evolution.

I like this idea. I can see how it might relate to autoimmune disorders, too. Recent research pointed to the fact that pancreatic cells aren’t getting the “go juice” that they need, and this triggers and autoimmune process. So you see, my body is getting rid of a part that is damaged. Smart body. It just hasn’t figured out how to clean out the damaged parts and regrow a new one. One day, maybe all of these cancers and autoimmune disorders will result in STRONGER people. People who are more resilient. People who can restore themselves.

And my body, right now, is part of that evolution.

This makes me trust a little bit more.

Bottles and butter

2007-08-20T22:17:00.000-07:00

Just got back from a vacation. I'm running longer runs - long being an hour or so. I've discovered that my endorphins start to kick in around 35 minutes of running. Then I feel HAPPEEEEEEE! And spaced-out. So I start to obsessively check my blood sugar, because that's how I feel when I'm low.

On another note, my daughter is totally focused on plastic water bottles at the moment. I find these to be wasteful, toxic, and generally blech. She loves em. We just got her a clean, stainless-steel one, so hopefully that helps. Her focus makes me so worried, though. Drinking a lot of water is a sign of diabetes. No word from Trialnet yet about whether she has Type 1 diabetes antibodies, but so far her blood sugar is fine. But why oh why does a Type 1 diabetic get a kiddo who's so interested in drinking water as a hobby???!!!

Another water bottle point of interest. I've decided that I will multi-task when I am jogging. My water bottle sloshes around so much, I've decided to buy whipped cream, but it into another bottle, and make butter as I jog. Tee hee. I may just give it a try this week. Yum, organic butter.

My knitting plans are stressing me out. I now have a knit-a-thon scheduled for September 22nd at Lonsdale Quay. Now I need to do PR! AUGH!

Roadblocks

2007-07-31T07:37:00.000-07:00

Ok, I'm, hitting a mental roadblock in this running thing.
I'm on strike (literally) at work at the moment, so that threw my pace off a bit. I normally run home from work. So now I'm running to my strike.

And there is a killer, killer hill that I need to get over to get there. Yesterday the outline said, "Run 40 minutes, walk 1 minute, run 20 minutes." Yeah, right. The outline didn't see that hill!

I almost made it up without walking. I tried to be tough. But when your running speed slows to below walking speed...well, it's a little discouraging.

I figure that this hill is mine to conquer. Once I'm back to work (soon, please!), I will make this my weekend run. If I can get up this danged hill, a marathon should be a piece of cake. Right?

Just a few of my Diabetes Rules!

2007-07-13T14:57:00.000-07:00

When I was thinking about my last post, I decided to make a note of some of my personal “diabetes rules.” I stopped when I got to the end of my piece of paper. It got too overwhelming!
Whatever happened to that “eat well, take your insulin, and exercise” myth about diabetes management?

Everyone’s body is so very different. These are my rules for my body, gleaned over two years of diabetes. They include:

Exercise:
If I exercise right before a meal, I set my basal (background) insulin to 25%

If I exercise for up to 3 hours after a meal, I need to eat to bring my blood sugar up to AT LEAST 9, then monitor several times during exercise to make sure I don’t go low.

If I plan to exercise right after a meal, I give myself 2/3 of the insulin for the meal (less if it will be strenuous exercise), and give myself 50% up front and 50% over the next hour.

Meals:
For breakfast, I take my insulin all at once. I can eat eggs, Red River cereal, steel cut oats or buckwheat, tofu, or yogurt and fruit. That’s all. Anything else makes my blood sugar NASTY.

At lunch, my body is a bit slower to digest the food. I take 50% of my insulin up front, and 50% over the next two hours.

For dinner, I take 50% of my insulin up front, and 50% over the next three hours.

If I want to eat fatty foods, I take less up front and more over time.

I eat low-glycemic foods that reduce the “spike” in my blood sugar. If I eat high glycemic foods like corn or potatoes or melons, I take more insulin up front.

Treats:
Because treats aren't really meals, but treats are good for my mental health.

I can eat dark chocolate, the occasional cheesecake, and Breyers light ice cream. Any other sweet treats need to be eaten right before a walk so that I can bring my blood sugar down right away. Cake and cookies and other baked goods like muffins are OUT.

Sleeping:

2 hours after dinner, my blood sugar should be around 7. If it is not 7, I correct by eating. If it is too high, I wait and see.

At bed time, my blood sugar should be 7 or just under. Repeat the process above.

Every night, I wake up 1-2 times a night to make sure that my blood sugar is not too low or too high.

Sites:
I change my pump infusion site (where the insulin goes into my body) every 2.5 days. I change it in the mid-afternoon or before dinner. That way, it doesn’t stop working (or not even start working) overnight, and I don’t have a high blood sugar catastrophe. Theoretically.

I use one sort of pump site on my tummy and another on my – ahem – rear end.

So this is what’s going on in my head during the average day. And more. Oh yeah, and testing my blood sugar 10-12 times a day, correcting it with food or insulin. Woo hoo! Diabetes. It sure ain’t “eat well and exercise” anymore, baby!

The diabetes rules

2007-07-03T20:34:00.000-07:00

What are the diabetes rules?

A friend at work was discussing her recent first aid training. The firemen who were teaching the course actually talked about the symptoms of low and high blood sugar. A first, in my books. I've never gone through that in level one first aid before.

This got me to thinking about the general public's knowledge about diabetes "rules". Well, that and the fact that my great-aunt's chocolate cake recipe is heading to the newspapers tomorrow. You see, I do a bit of work with the media through my job as an education coordinator. Today I was asked to submit my favourite recipe to the local newspaper. I thought. I pondered. I decided that my great-aunt's chocolate cake was a sure winner.

Now, I am involved in a local project to connect those who can't afford fruits and veggies with yummy, locally-grown produce. I am a member of a local organic farm and eat truckloads of organic greens every week in the summer. My fridge is full of them as I write. Am I shaming myself as a person with diabetes and a greens lover? Am I setting a bad example?

There is a prevailing myth that people with diabetes can't eat refined sugar. But it's not that simple. You see, I use insulin to eat. To eat ANYTHING. Heck, even soy burgers and my bean sprouts have carbohydrates in them. Insulin turns soy burgers and sprouts and yes, even chocolate cake into useful energy for my body.

It's a fine balance, and it's a lot more complicated than "don't eat sugar." All sugars are not equal. Corn spikes my blood sugar, because it's a fast-acting carbohydrate. An equal amount of pasta will raise my blood sugar slowly, over a number of hours. A meal with fat slows the food in my tummy down, reducing spikes in my blood sugar. It doesn't matter whether that fat comes from ice cream or avocado. It has the same impact on my blood sugar. Ok, maybe not on my arteries, but my arteries are currently VERRRRY happy, thank you very much. Oh yeah, and I can eat very few sorts of food on an empty stomach, since everything I eat seems to barrel right on into my bloodstream.

So, diabetes rules are complex. They're personal, to a degree. And although chocolate cake isn't really on my list of favoured foods for everyday eating, dang it - it's an important part of a happy lifestyle. Isn't it?I'm not going to outlaw chocolate cake. The world would be a more dire and dismal place.

By the way, I compromised. I added the option to substitute whole wheat flour and grated zucchini in the chocolate cake.

Now where's my halo????

Mental wanderings

2007-06-22T20:46:00.000-07:00

A friend died recently. More of an acquaintance of long standing – he didn’t let a lot of people in. He had a lot of questions about life, and at the end, I don’t think that he had found the answers that he was looking for. That was hard.

During a longer run last week, I started thinking about lives and how they are lived, and about my daughter’s future.

I would like her to:

Experience joy.

Feel freedom, the freedom that she can do and be and go anywhere she wants, any time she wants to.

Appreciate what it feels like to give of herself to someone else, unconditionally.

Feel trust in herself and in others.

It has taken me two years to occasionally feel trust and freedom again. At the beginning of this diabetes journey, I felt that I would never be able to let my guard down. Diabetes is such a 24 hour a day disease, requiring vigilance even during sleep. My body was not to be trusted. I still feel this way to a degree, but I admit that sometimes there are snatches of time when I forget that I need to remain vigilant. And they are wonderful.

On being normal

2007-06-15T07:12:00.000-07:00

"It's good that there's so much technology out there to help manage diabetes. You can still live a normal life."

Sure?

Well, for one thing, I've never lived a normal life, not even pre-diabetes, but I digress. Normal is what you make of it.

But honestly, life with diabetes is not normal. Diabetes is an invisible disease, only visible in its complications. It is not readily apparent that something is "wrong" with me. This does not mean that life with diabetes is easy.

One night before dinner, as I put the food on the table, my daughter and my husband started to eat. I went off to change my pump site. Then I wandered into the kitchen to test my blood sugar and record the results. Then I counted the carbs in my dinner and put all of that through the pump, which delivered the insulin. I was ready to eat. My husband was almost done.

I said, "Did you know that some people don't have to change their pump site and test their blood sugar before they eat?"
"Yes," he said. "They're on injections."
"No," I said. "People like you!"

The other day, I was thinking about what would happen if my daughter developed diabetes. Again, she can "live a normal life." But here's the thing: I don't want her to have to try to be normal.

I test upwards of ten times a day so that I can live a normal life. I plan every bit of eating and exercise I do throughout a day, and I move around a lot. This is hard. It's hard to think about everything you eat and every step you take throughout a day! I've even gone low at library story time, when we were doing a lot of bounces with the babies (it was right after breakfast, and I'd given myself a normal amount of insulin for the meal, never thinking that baby-bouncing would count as "exercise").

This normal life also has a toll on those around me. I forget that. I don't want to think about it.

My darling daughter appears quite healthy, so far. She enjoys playing with my old meter. She likes to have a "poke" and change her "site" when mama does.

Last night, I was making up some pretend test strips for her to put in her toy meter. She knew exactly where to put them, which makes sense, because she sees me do this umpteen times a day. I did a quick calculation and discovered that since my daughter was born, I've tested my blood sugar more than seven thousand times, likely approaching 8000. I thought that this was somewhat amusing, and it explained why my child whips out the test strips and inserts them in the meter like a pro.

I told this to my husband. His response was that he hated this damn disease and its impact on our lives. He ranted on for some minutes about this.

This is my normal life.

Tomorrow's run

2007-06-11T20:40:00.001-07:00

Tomorrow I go for a 52 minute run.

I will run up into a local park, along a road inhabited by other runners, bikers, and dog walkers.

I’ll run past a spring, through alder forests and over a waterfall.

I’ll listen to the thrushes that only live here in the summer time

And look at the salmonberries.

I will find a quiet place in my mind.

Tomorrow I am running 5 minutes on, one minute off.

I hope I’m prepared.

I can't believe it!

2007-06-06T15:13:00.000-07:00

I just submitted my record attempt to the Guinness Book of World Records. That feels so good. And intimidating.

Does this mean I really have to do this?

AAAAAHHHHH!

Genes play a role...

2007-06-06T07:40:00.000-07:00

An interesting study from the Joslin Diabetes Centre in the USA. They've been studying those who have survived type 1 diabetes for 50+ years, and it looks like genes play a HUGE role in the development (or not) of complications.

May, 2007

In the three years since the start of the second phase of the Joslin 50-Year Medalist study, we have studied over 275 Medalists who have traveled to Joslin. In addition, we are scheduled to study another 150 Medalists in the last year of this study. To those who have already participated, we would like to thank you for all your efforts and help. For those of you who are scheduled to come during the next few months, we are looking forward to meeting you and learning from you.

In the following, I will provide a brief summary of the results that we have obtained thus far. In the first phase of the study, which took place three years ago, we asked many of you to fill out an extensive questionnaire and provide some laboratory data from your doctor. The results from these questionnaires and lab results provided the very interesting finding that close to 50% of you appear to have escaped complications which occur in almost all diabetic patients by 30 years duration. These complications include eye disease (retinopathy), kidney disease (nephropathy) and nerve disease (neuropathy). Further, we have found that both genetic and metabolic factors are important in the prevention of complications in type 1 diabetic patients.

The results showed that as a group, Medalists have controlled their glucose very well for many years. In addition, hemoglobin A1c, a measure of chronic glucose control, does not seem to correlate with the various complications described above. This means that the long survival of Medalists is due to both their own efforts in controlling diabetes and their genes, which protect them from the adverse effects of elevated glucose levels. These are very exciting findings which will be published in the journal *Diabetes Care* in the next few months.

In the second phase of the study, we are bringing many of you to Joslin and examining the status of your complications with respect to your eye, kidney, nerve and heart function. We are also studying the metabolic changes in your blood and your body's ability to produce insulin. We are also studying your genes in order to determine whether you have typical type 1 diabetes or a different, yet unknown type, and whether your body is still producing auto-antibodies against insulin producing cells found in the pancreas.

Data from over 200 of you have been analyzed and we have made very exciting discoveries. The data showed that most of you have clinical and laboratory findings consistent with patients who have been identified with "typical" type 1 diabetes. We have confirmed the results of the questionnaire to show that the parameters of glucose control such as hemoglobin A1C and glycated albumin do not correlate with the presence of eye, kidney and nerve dysfunction in the Medalists. The eye studies, which took pictures of the back of the eye, showed that about 40% of the Medalists do not have significant eye disease even after 50-80 years of type 1 diabetes. In addition, we also analyzed the lipid or fat profile of blood samples, which showed that many of you have elevated levels of HDL, the good cholesterol that protects people from developing cardiovascular disease.

From a complications point of view, these findings are very exciting since they showed that 40% of the Medalists have factors or genes which have protected them from developing diabetic eye disease. In the next phase of this study, we are planning to perform genetic studies with the hope of detecting genes which can protect all diabetic patients from developing complications. The results are clearly telling us that further genetic studies are needed in order to find these diabetes complication-preventing genes.

In addition to the exciting findings regarding diabetic complications the results from the Medalists have also yielded an unexpected finding regarding your pancreatic functions. Surprisingly. the pancreatas of over 20% of Medalists appear to produce a small amount of insulin. This finding is clearly very important and exciting since it suggests that in some type 1 diabetic patients, the pancreas, which makes insulin, may still be functional after 50-70 years' duration. If this finding can be confirmed, then it raises the possibility that many type 1 diabetics who have fewer years of diabetes may continue to have functional pancreatic tissues that could make insulin. Thus, in the last few months and in the near future, we have/will bring some of the Medalists back to Joslin for further studies to determine whether their pancreatic islets can potentially make insulin. In response to various known stimulations of insulin secretion

In the above, I have summarized the new findings from the Medalist study, which have clearly suggested that we should do the following: 1.) Further genetic studies are needed to determine which genes are present in approximately 40% of the Medalists that are protective factors for preventing blood vessel problems. 2.) New stimulation tests are needed in order to determine whether some of the Medalists still have functional insulin-producing islets after such a long time with type 1 diabetes. 3.) Further collections from new Medalists must be done in order to continue the study and gather more data.

World domination

2007-05-31T20:31:00.001-07:00

In all of that ranting, I forgot to outline my plans for world domination. These include:

1. Apply to the Guinness Book of World Records to develop the world's longest awareness ribbon.
2. Ask people across the country to knit metre-long scarves
3. Make these into a ribbon
4. Sell the scarves to raise money for the Canadian Diabetes Association

And all this by November, diabetes month. Yikes!

A little odd? Perhaps. Fun? Hopefully!

My goal: 2200 scarves. Enough to beat the old record, and enough to have 1 mm of scarf for every person with diabetes in Canada.

A delightful rant

2007-05-31T20:22:00.000-07:00

One of my current irritations (well, long standing irritations) is when people say, "Oh, you have diabetes, but you manage it so well. You'll be fine. I mean, I know that some diabetics have problems. In fact, one of my aunt's nephew's cousins had Type 1 diabetes and he drank/smoked/didn't exercise/ate potato chips and he went blind/had kidney failure/had his leg amputed/died. But that won't happen to you."

Yeah, right. I eat a good diet. My doctor tells me that I eat an unnaturally good diet, actually. And I am becoming heavily addicted to running. But you know what? The last 2 weeks my blood sugar has been lousy. Super lousy. All because of this rotten cottonwood.

Allergies make my blood sugar go up. I get up in the morning feeling bad because my blood sugar was high all night. I struggle all day to keep it down, taking nutty amounts of insulin and going for walks when required. I eat less. I eat low carb. Gah! I do it all, and I still get rotten results.

After a couple of weeks of this, last night my pump site failed (stopped working) and my blood sugar rose to a delightful 14. Normal is 4-6. 14 feels foggy, icky, and as if I need to go for a long wade and drink in a desert oasis. Blech. So I was up a lot of the night.

And that's why this "But you manage it so well" is so annoying. I do manage it quite well. But life is rough, and random events happen that send my blood sugar off on an adventure of its own. And I am dragged along with it, growling irritably.

2007-05-21T14:22:00.000-07:00

I've been running for 2 weeks now, three times a week. I run after work - on the way home, I head up a local trail. Last time, I got right to the end. I am rather enjoying it, in an "ouch" kind of way. Soon, I will start to wean myself off of the "run 2 minutes, walk 2 minutes" thing, into the "run 2 minutes, walk 1 minute." Aieeeee!

Why am I doing this? What are my evil plans for world domination?
Well, none of the latter, actually.

I hate the thought of any kid growing up with this disease. Of course, 100 years ago none of us would have been here. Not for long. Insulin was invented in 1922. Without that, on a nourishing lettuce and broth diet...well, I wouldn't be here for long. So I am happy that I am here, but this disease is a royal pain, and more.

I get told all the time that "all you need to do is keep your diabetes in control, and you'll be fine." Right. Sure. Tell that to my body. My body with all of its infinite little hormonal variations due to stress, illness, and what have you. My body that reacts to exercise so intensely. Diabetes management is an art, and like any art, it is messy. Fine-tuning is possible, but perfection, impossible. And to fine-tune, I need to listen to my body for signs. Every day, all day, without respite. Or else there are consequences, both long-term and short-term.

A man who was an important advocate for diabetes research in Canada died last week. He was in his 50s, and he slipped into a coma from a night time low. This is one of my greatest fears - it is difficult to realize that your blood sugar is going low when you're asleep. I fear that I will not wake up.

I'm also finding that running is a challenge. It's a good way to eat raisins, though, I've got to say. I love raisins and haven't eaten them since my diagnosis 2 years ago. When I run after work, I still have enough lunch time insulin in my system to bring me low really quickly, if I don't eat. That's where the raisins come in. I think that I am going to be the first person to GAIN weight jogging.

So, where was I - world domination? Ah, tune in next time for an outline of my plan to take over the Guinness Book of World Records. Clue: it involves knitting.