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.