Diabetes UnConference

In March, there is going to be a Diabetes UnConference in Las Vegas…it’s a peer to peer conference for people with diabetes.

Thanks to the generous support of our sponsors and The Diabetes Collective, Inc., a Florida not for profit corporation, we are able to offer a number of scholarships to The Diabetes UnConference.

It appears that I am one of the lucky people to have won a scholarship to this Un-Conference.

I have to tell you, I am extremely nervous. I have never been to a conference of any kind…and to have to go alone….

But I’m also excited. It’ll be great to meet other people with diabetes. The only other person with diabetes I have ever known was a childhood friend of my sons…he was eleven or twelve when he was diagnosed and he, his mother, and his family was struggling with the whole ordeal up until the time my son and this boy stopped being friends…so it was not so much a mutual support relationship as it was a source of angst for everyone.

Meeting adults with diabetes should be an informative experience…

I hope to learn a lot from this experience. I hope to meet people I have more than just a label in common with. I hope this experience will smooth the edges of my emotions in regards to not only diabetes, but to the whole DOC pigeon holing thing…I hope I will discover that there are people out there who get it, who get me, and who are willing to be angry, happy, sad, excited, and frustrated with me….

I’ll keep you updated, dear reader…

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New Perspective

I love this….

What I want everyone to realize is that I don’t have “type 2 diabetes” but that I do have “diabetes” and the way it came about is type 2(reason unknown).  I treat my diabetes just the same as many thousands of other diabetics and it does not make one bit of difference what type it is.

Why can’t we all have this attitude?

Interested in the rest of John’s story? Go read it on Six Until Me….

A ‘Life Sucks’ Post

This is totally not diabetes related…

We found out this weekend what likely caused my granddaughter to be stillborn. It seems my daughter-in-law contracted the human parvovirus at some point in her pregnancy. This likely caused the baby to become severely anemic. It might explain why she was so tiny at birth–just 4 lbs.

It’s a devastating thing. It should be a good answer, one that means they do not have to worry about it happening again if they choose to have more kids. But both my son and daughter-in-law are blaming themselves.

My daughter-in-law is a teacher. My son works in a hospital. Either of them could have picked it up at work. Or they could have come across it randomly. No one will ever know because they do not know when she had it as there were no obvious symptoms.

I just hope this closes a door and allows them to continue to heal.

Public Stupidity

This is the kind of stuff that just makes living with diabetes harder…..

Diabetes type II is progressive insulin resistance and eventual pancreatic fatigue/failure. The pancreas bravely attempts to communicate “Take this toxic substance, glucose out the blood!!!” while your muscles and fat cells disobediently says “I have had enough stored glucose thanks” and refuses or begrudgingly acceptance glucose with higher concentration of insulin.

WIth this understanding the treatment of DMII is simple, consume very little carbs, empty your glucose stores in your liver and muscles through high intensity aerobic exercise. Also to treat any other insulin resistance causes which are usually from systemic inflammation (Ie Rheumatoid arthritis) or high cortisol levels (being stressed). These latter points can be more difficult to treat but is usually of lesser importance.

Diabetes is not a disease (its complications are), diabetes is simply a failure to send the correct message to your metabolism (that is we are persistently asking our physiology to prepare for winter). Diabetes is curable and its time we sent our metabolism the right message.

If anyone wants the advice of a medical physician who has studied biochemist/immunologist and has a different perspective of diabetes…….

Is this why we go to message boards? To be bombarded with stuff like this?

At least I wasn’t the only one who saw it as the bull**** it is……

Urine Watching

Diabetes affects your life in many ways. It forces you to change your eating habits. It makes you change the way you look at exercise. It forces you to pay attention to numbers that mean something only to you and your treatment team.

And it forces you to become a urine watcher.

How many times have you looked up the complications of diabetes and read obsessively about the symptoms of those complications? How many times do you get a stomach bug or a cold that causes your chest to become congested, leaving you with shortness of breath, and you begin to think that it might be the beginnings of fluid retention? Do you ever see spots in front of your eyes and wonder if it might be the beginnings of retinopathy?

I had high blood pressure related toxemia with all four of my pregnancies. The last pregnancy I was spilling protein so profusely into my urine that the doctor put me in the hospital at 34 weeks and delivered my son six weeks early.

How much damage did my pregnancies do to my kidneys? How much time do I have before diabetes kills my kidneys?

I’ve become a urine watcher.

Do you know what the normal color of your urine should be?

I do.

Have you ever wondered what medical websites mean by foamy urine?

I’ve seen pictures of it.

Do you ever stand over the toilet and try to decide if the few bubbles in the water (sorry for the visual 😉 ) are foam or just a coincidence? Do you ever wonder if darker urine is from some nefarious complication or just the fact that you were too busy the day before to drink all 64 ounces of your daily water requirements?

I do.

I drive myself crazy some days, worrying about the condition of my kidneys. And there is a surprising lack of information on the web for diabetic related kidney disease (except for those many sites that blame the patient for not keeping their numbers within the proper margins).

I can’t even enjoy a week of really good sugar numbers because I wonder if maybe they are lower than usual because my kidneys are not filtering the insulin out properly and it is working longer than normal.

Welcome to the neurosis of diabetes.

HPIM0059

My youngest a day after his premature birth.

Diet and Stuff

I realized the other day that I haven’t posted about my diet lately. No, I haven’t quit. Quite the opposite. Things are still going really well.

I have discovered that now that I have cut all meat out of my diet that the idea of eating meat just kind of grosses me out. My husband made fried chicken the other day and I just couldn’t…and fried chicken was once my favorite. I had a salad instead and didn’t feel even the littlest bit left out. That’s a new change for me, too.

I’m glad I’ve been able to stick to my diet. I’m a little disappointed that it hasn’t resulted in any significant weight changes. In fact, I’ve recently gained ten pounds and have no clue why…I eat salads, beans, and grains most days. The joys of injecting over 100 units of insulin a day, I guess.

(No, I don’t eat pasta every day. In fact, I’ve only had pasta twice in the past two weeks.)

There also hasn’t been a significant change in my gastro symptoms. Discovering my sensitivity to cheese has helped…but there are still those lingering symptoms. Also doesn’t help that my entire family came down with a stomach bug a little more than a week ago. Hard to pinpoint the difference between virus and something else when those things go on.

So…its been an eventful few months. My granddaughter…now my son and daughter-in-law have moved closer to us, but we still don’t see them often. Everyone is so busy with their own lives. And, just as I was beginning to put my brain power toward Christmas, we get our property tax bill (expected, but hoping for a little smaller bill)…when it rains, it pours.

Anyone want to buy a four bedroom house in the middle of nowhere?

Anyway. Life isn’t that bad, I guess. Still have my gorgeous daughter to make me laugh, and my amazing son to give me hugs. That kind of makes all the struggles well worth it….

Halloween 2009…(that’s my daughter as a zombie princess, my middle son-who is a huge fan of video games and horror movies-and, of course, the baby of the family…they grow up so fast!)

HPIM1148

Money, Money, Money

I’ve come to the conclusion that diabetes is only manageable for the rich…or, at least, the comfortable middle class with really good insurance.

My family has never been really well off. My husband works a service-type job in which he is paid by the hour. I didn’t work until about ten years ago when I began working freelance writing jobs over the internet. It was a paycheck to paycheck existence, but we did alright. Our bills were paid and we usually had what we needed.

That all changed when we moved.

As most of you already know, our house was bought by the school district and we were forced to move. It seemed like one of those double edged sword things–we had to leave the city we had lived in for twenty years, the city of my husband’s birth, but it was a new start where we could buy a house straight out, no mortgage. It should have been a good thing.

Not really.

My husband got a job right away, but he’s only making a little less than three quarters what he was making before. Most of his paycheck goes to pay the health insurance. That leaves us mostly dependent on my pay from random freelance jobs, which, if any of you have ever worked freelance will know, is highly unreliable. We barely have enough to pay our monthly bills–usually late.

I’m going to have to box up my insulin pump in a month or so. I owe a lot of money to Medtronic for the last two sets of infusion supplies (the insurance deductible and 20% copay) and they will not send more until I pay.

How do you choose between paying your monthly bills and paying for your medical supplies?

I never thought I’d find myself in this situation at my age. I thought the nights of lying awake at night worrying that someone was going to come repossess my car were over. Only young, dumb people just starting out struggle like this, right?

My twenty-three year old son is doing better than we are.

I never imagined it would be this hard.

I would give, or do, just about anything for a few thousand dollars…

I wish one of those politicians who are always saying that Americans in debt are there because of their own laziness and poor choices could walk a month in my shoes. Work forty hour weeks for less than four hundred dollars every two weeks, or work at freelance jobs for twelve, fourteen hours a day for finicky clients who often drag their feet about paying, or won’t pay what the work is worth.

I could get a nine to five job…but that would pay less than what I make freelancing, and who would care for my kid?

Get a mortgage? And how do we pay it back when it’s gone and we’re back to living on less than $2k a month?

I’d love to see Obama or one of these snobby Senators try to survive on less than $2k a month…pay my bills, feed and clothe my children on that and still pay increasing medical costs….

I guess, for now, it’s back to MDI with cheap Walmart insulin.

Bad Habits and the Diabetes Burden

A few weeks ago, I wrote a post promising to explain how I ended up with a blood sugar of 433. I’ve been putting it off because it means explaining a really bad habit I have that I should try harder to break. But, some habits, once they get started, are so difficult to break….

When you first get an insulin pump, the educator warns you not to change your infusion set before you go to bed because you need to make sure there are no problems with the new site…ie, clogs or whatever that might cause you not to receive the basal insulin that is infused every few minutes throughout the day and night. I have, actually, changed my infusion set at night, but I really try not to. Not because I don’t want to risk not getting my basal while I’m sleeping, but because that late at night it just seems like so much work. So, when I notice that my insulin is low, but it will likely last until the early morning hours, I have gotten into habit of not changing the infusion set until after a full night’s sleep. I like to change my set after my morning shower because it means one day of freedom from being concerned about knocking the set off while shaving or using an exfoliating puff…

So, this one Friday night, I had eight hours of insulin left. I decided to wait until morning to change it. I woke early…about 8…to the alarms going off on my pump. Low Reservoir. I did that little thing–push esc and act to reset the alarm–and went back to sleep. A few hours later, the little syringe icon was empty. Fine. I was up, I was going to enjoy a cup of coffee (no cream or sugar) and get in the shower. I’d be without insulin for, maybe, an hour or two.

The best laid plans….

I ended up putting off my shower longer than intended–emails, kids, and other things took priority. By the time I got in the shower, my sugars were likely high, over 200. Not a real problem, I could bring that down easily with a quick correction dose when I had my new set put in. But when I got out of the shower, I felt like total and complete crap. I don’t usually feel the effects of a high other than thirst and a little increased urination, so I didn’t think about it. I put in the infusion set, but continued to feel really bad. So I checked my sugars.

433.

That’s the highest I have been in a long time. Unlike most type 1s, I was not that high when I was first diagnosed. In fact, my blood sugar on diagnosis was 140. Most of my highs for the first seven years of this lovely condition were restricted to the low 200s. I had a few 300s in those years, but not many. It wasn’t until after my pregnancy with my fourth child that I began to suffer real highs. Once I was almost at 600. But my numbers have been well controlled since getting my pump eighteen months ago and I haven’t had a sugar over 270 in that time. Until this particular day.

What a crappy feeling. And it took forever to get it to come back down.

I’m not a stupid person. I know, in this particular instance, I did this to myself. I know that not having the basal insulin for more than a few hours added to the problem. But, I guess people in the DOC and society in general are not the only ones who put us in categories. Sometimes I forget that, although I am a type 2, that my sugars can, and will, rise rapidly without insulin.

I could have avoided the whole situation if I made my diabetes more of a priority. Somehow, it often gets pushed to the side. I have to work to pay the bills, like every other responsible adult in the world. Every month we fall farther and farther behind on those lovely bills, so I take more and more freelance work only to find myself struggling to meet deadlines that overlap and make it impossible to make everyone happy. And then there are my kids. My daughter has an ear infection that required a doctor’s visit. My daughter-in-law texts me four or five times a week needing to talk about her loss. My sons are always reaching out at the worst times (not that I don’t enjoy talking to my kids, it just happens to interrupt deadlines and force me to work too late into the night). And then there is the seven year old who begs to be enjoyed before these precious years pass us all by.

I’m not sure where diabetes fits in. How do you make yourself a priority when it seems so selfish in the light of the reality of family life? I know it seems like such a small thing, changing an infusion set once every few days, but sometimes it seems like a heavy burden in a life that is already too burdened…

Some days, I just really hate this Diabetes….

Grief

Ok, so I had this scathing post I was going to publish. I wrote it and I was reading through it, thinking that my words were perfect and it was going to touch a nerve…all those things a writer thinks when psyching themselves up to put their words out there in the world. It’s kind of like sending your youngest kid to school for the first time. You’re proud…but so scared, all at the same time.

And then I got to thinking that I was being a bit of a hypocrite.

My post was on negativity. I’ve been reading a lot about it on the web lately–not just on diabetes blogs, but elsewhere, too–about negative comments and negative posts and negative attitudes and negative….ect, ect. It just feels like everyone is so negative these days.

I’m sure those of you who read this blog regularly–all two or three of you, thanks so much, have no idea why you keep coming back 🙂 –know that we recently suffered a huge loss in my family. This comes on the heels of my son’s–the same son’s–battle with leukemia. It has been a hard few years for him, for us, for everyone touched by him and his amazing spirit. I look at him and I can’t believe he came from me. To be so resilient, this child who shouldn’t have been. You see, I was seventeen when I got pregnant with him. I seriously considered an abortion even though my family was Catholic at the time and it would have been a darker sin than getting pregnant out of wedlock. And then I considered adoption. For years, as I struggled first as a single mother and then as a newly married woman, I wondered if he might have been better off adopted. All that negative energy around him, and he still grew up to be an amazing man who inspires others to greatness. And yet…his unborn baby was surrounded by love, was highly anticipated…and she is lying in a grave.

Life has a way of making your head spin, trying to figure out what its all about.

So, this morning, I’m reading the word negativity one too many times and I wanted to write this scathing post about how some people invite negativity and then complain when they see it. How we start these discussions, but want to control what comes of them. I wanted to tell these people that they shouldn’t invite discussion if they don’t want open, honest replies. That calling out people for doing what comes naturally, what was invited, is wrong.

And then I realized I’m as responsible for doing this as anyone else.

It’s kind of what I’m doing right now.

Is there a good way to participate in these discussions? Is it better to be nice than honest? Is it hypocritical of me to go to a site that was designed for people to post their honest…if negative…opinions about diabetes and copy/paste sections to complain about on my blog, and then get upset when someone else does the same to start a discussion I (partially) disagree with?

Yeah. I know. It is hypocritical.

And honest.

Where do you draw the line between honesty and negativity? How can you be honest and not sound negative to some people? How can you always be positive about things like life with diabetes, misconceptions about diabetes, the way others look at your life with diabetes, the way you look at life with diabetes?

To be totally honest, I still struggle with this. I don’t want to be diabetic. I don’t want to wear an insulin pump every day, don’t want to check my blood glucose every day, don’t want to put up with doctors who assume I’m non-compliant before talking to me simply because I am obese. And I really, really can’t handle the guilt of a whole society that thinks I did this to myself.

It’s like grief. I’m stuck in that anger stage–railing at God and the doctors and anyone else who could possibly be to blame for the death of my first grandchild. For the grief I hear and see in my son and daughter-in-law. For the text messages that make me cry for what will never be…it sucks.

So does diabetes.

When I turn to the DOC and see comments that suggest I did this to myself and deserve the punishment of living with the daily glucose checks, the insulin pump, the highs and lows…it pisses me off.

So, yeah, I’m a little negative. And so are others like me.

I think we have a right to our negativity.

It’s nice that some people have found solace and solidarity and happiness in the DOC. I’m all for it. People need to stick together, to share their stories and feel acceptance. It’s part of the human condition.

But that same group should understand more than anyone else how hard it is to be on the outside looking in. And that sometimes it is okay to be negative. That’s how some of us–those of us who are too blunt, too super-sensitive, too opinionated–deal with our grief. Because it is about grieving. No matter what type of diabetes you have, you have lost something with your diagnosis. For some it is dinner at their favorite pizza place. For others, its being stuck taking a pill that doesn’t always work nicely with the digestive system, while learning to incorporate exercise into a lifestyle that may or may not be conducive to it. And then there are others who have to deal with the whole shibang…the loss of good food, the right to skip that workout, the ability to sleep through the night without fears of dying from a sudden, unexpected low blood sugar.

My loss may seem trivial to you. But it is still loss.

Its like comparing the loss of a loved one.

A month after my granddaughter was stillborn, a coworker of my son’s lost her husband to a tragic, rare stroke.

Is her loss greater than my son’s?

Is it even a fair comparison?