And another one bites the dust

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

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

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

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

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

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

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

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

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...

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.

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

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.

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)

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

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

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

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

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

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...

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.