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I’ve been using the CGM for a year now, and I’ve achieved truly excellent control of my diabetes. So why am I still feeling sick all the time? I went to the doctor Friday to find out. The constant hair loss, never-ending, crushing fatigue, frequent and debilitating headaches, inexplicable weight changes, and just overall feeling ill all the time was supposed to go away or at least improve with better control.
They took some blood to run some tests, but while there my doctor (really a nurse - apparently we don’t have an actual doctor) told me that even with great control I’m still a diabetic and can expect to feel ill at least most of the time.
EXCUSE ME???
Do you have any idea how much time I spend researching and implementing new strategies for improving my health? Or how good I am at it? I think equally with both sides of my brain. Only a very small percentage of people do this, most are biased toward the right or left, and the big benefit of using both to equal advantage is that you are essentially a problem-solving machine. I focus all of this problem-solving power on managing my disease all the time. All. The. Time. ALL THE TIME. And yes, I do expect to see some benefit. Because if I’ll just live longer, well then forget it. Who wants to live 80 years feeling sick as a dog all. the. time?
I wear an instrument of death every single second of every single blessed day. I do not do this for kicks, and I am not ignorant of my options. Insulin is a choice. It is not a necessity. Not all lives are better than none at all. And I have four choices:
I think that a physician who ignores the existence of these options, no matter how well-meaning she may be, is stupid. Just plain stupid. I am not wearing out my brilliance on this disease because I must. And I can stop any time I damn well please.
I am not going to kill myself. But I think I may need to find a new doctor.
Jeremy and I have really been focusing on making an active decision in the presidential election this year, so we’ve been listening to a lot of Vermont Public Radio during our commute. Not because their journalism is balanced, by any stretch of the imagination, but because it’s the only news radio we know that we can get out here.
One of the top issues among candidates this year is health care.
If I hear one more candidate say that “diabetes is costing us too much money,” “diseases like diabetes are out of control,” “we need to control diabetes,” or anything about diabetes being preventable I am going to choke.
Today I finally did call Speaking Candidate a jackass. Loudly. Right into his speaker.
Because, you know, they are NOT talking about Type I diabetes. They are ALWAYS and ONLY talking about Type II, which to a degree is preventable, does have a high correlation with inactivity and diet, does entail a measure of personal responsibility. Meanwhile, since the rest of the nation understands just as little as the candidates about diabetes, what it is, and what it means, I am under attack for “letting” this happen to myself. For “allowing” my body to kill off my beta cells. For costing the rest of you money.
Well I’m sorry, but I’d just like to point out that I’ve sent a lot of people to school with my taxes, and I don’t see a degree hanging on my wall yet! Anyone ignorant enough to swallow this hogwash can just go choke on that!
Written by Angela at 6:39 pm - Filed under Diabetes - No Comments
Jeremy: I have a small surprise for you. It’s over there.
Angela opens the package to find a doughnut: Mmm!
Jeremy: Sue suggested I read The Seven Habits of Highly Effective people. You’ve probably already read it?
Angela: No. ::Chomping on the doughnut:: But I probably do most of them anyway. I do a lot of things by instinct that most people have to learn.
Angela, still chomping away: I’m feeling pretty confident and happy today, can you tell?
Jeremy: Indeed! How could that be?…. Did you know you had a doughnut coming your way?
* * * * * * *
Mmm-mm. Fat and happy. That’s me.
Of course, I practically swallowed that doughnut whole before I even thought about it, and this was supposed to be the night I quit eating early so I could have a clean overnight BG pattern to look at tomorrow morning….
Written by Angela at 9:22 pm - Filed under Our Little World, Diabetes - No Comments
Well, as you can probably imagine, our new HTPC has some quirks. Like, when Jeremy goes on a rampage and rips everything apart, then forgets to plug the satellite remote receiver back in… I can’t watch TV until he gets home and fixes it. This does not happen if you’re just using a signal box and a TV. This also doesn’t happen if you’re a techy. But when little old me is confronted by the Blue Screen of Death with a cryptic message scrawled in a beautiful high-def white letters, let’s just say that I simply ignored the whole thing. I did try to play some music, but Jeremy hasn’t “pointed” Media Center at the music folder on the NAS yet, so it only recognizes songs we’ve actually played so far. It is kind of cool that when you play a song, Media Center recognizes it as music and adds it to your music list. It even goes to look up the CD art and song names for you.
We’re going to be gone for part of the weekend, so I’m trying to get my week’s homework done early. However, in lieu of that tonight, I spent two hours straightening out our health insurance accounts from June 07 to the present. It isn’t good, folks. The company that was administering (as in, the company that was supposed to keep all this straight TO BEGIN WITH!!!) our HRA plan has a quirky way of cooking their books, and they messed up BIG, HUGE-time: it looks like we’re out of pocket about $300 or so, and perhaps some penalties for overspending on our FSA account. Yep. Somebody’s going on a rampage tomorrow, and it’s not Jeremy!
We’re tossing around the idea of billing Upstate Administrative Services for my time. This isn’t the first time I’ve fixed their mistakes… it’s just the first time it’s going to cost me. Or is it? I can yell REALLY loud. Ask anybody how loud Lucy was at Durgee Junior High in 1994.
And that was 14 years ago. I’m bigger now. =)
Written by Angela at 10:25 pm - Filed under Our Little World, Toys & Gadgets, Diabetes - 1 Comment
First things first, we refer to our glasses by number for ease of communication. One is smallest, three is biggest.
Jeremy: I’m ready for my chocolate milk.
Angela: Me too.
Jeremy: … Really?
Angela just looks at him.
Jeremy: What size, a number 2?
Angela: Um… a 3.
Jeremy: Re[ally]-. You want to start that insulin now?
Written by Angela at 5:26 pm - Filed under Our Little World, Diabetes - No Comments
We watched a movie on Netflix Watch Instantly tonight, “One Last Thing.” It was actually pretty good, approaching the subject of death with respect, but humor, but not to much humor, a nod toward the afterlife without being overly religious, some crazy teenager antics, well-written and acted. The mother of the dying kid is Miranda from Sex and the City, and I enjoyed the way she played her role.
Anyway, the song played during the final credits talked about not crying for me when I’m gone because I’ll be in heaven where the blind will see, the lame walk, the mute speak, and I suddenly realized:
I am not going to be a diabetic in heaven.
Written by Angela at 9:21 pm - Filed under Musings, Diabetes - 2 Comments
The first time I ever heard that title, it thrilled me. What a great title! And how applicable to so many days!
We’ve had a terrible, horrible, no-good, very bad week. It started out ok. With so many people pregnant around us, I’ve been flipping out about the what-if. Jeremy solved the two biggest problems at the same time last Saturday, and we spent some time on Sunday planning an addition to our house. Monday Jeremy called an appraiser as the first step to getting it done.
And then Tuesday, not two hours after I finished outlining our plans very excitedly to my boss, we got hit over the head with a baseball bat. Not one of those trashy hollow aluminum ones. Solid ash. A couple of weeks ago our company decided to change to an HSA-based high-deductible health plan for the new year. It’s great if you’re healthy. If you’re sick like me, it’s a REALLY big problem. However, we solved the problem. And then something changed, so we solved it again. And then on Tuesday something else changed, and this time we can’t solve the problem. This means that not only are we going to be out-of-pocket huge amounts of money for the first six months of the year, but I am probably going to have to quit using the continuous glucose sensors.
And we’re not adding on to the house, and if by some terrible, horrible, no-good, very bad twist of fate I do get pregnant, we are 100% completely and totally screwed. Nowhere to put a baby in this house, no way to afford a bigger one.
And I’m still going to be wearing the same two pairs of pants and one pair of shoes that have made up my wardrobe for the last two months, six months from now.
And I’ve lost sleep over this one, and I’ve shed tears, and I’ve had bad dreams and even heartburn, which is unusual for me. I’ve been trying to come to grips with it. It’s gotten a little better over the course of the week.
And then there was today. A couple of months ago the CEO of our company heard me sing, and asked if I might consider singing at the Christmas party. I said OK. I never heard anything else about it, but in my experience people are extremely inconsiderate of singers, so I kept it in the back of my head as a possibility. Today the CEO passed Jeremy on the stairs and said, “So do you think we could get Angela to sing today?” Jeremy told me and I warmed up in the car. Then while handing out presents, the CEO said to me, “Are you going to sing something for us today?” I said sure, what do you want to hear, and he said it didn’t matter, whatever I wanted to sing.
Then we played the company Christmas game (which is pretty good, and they did some new things this year that made it even better), and we were dismissed.
I don’t need to sing. Just don’t tell me I’m going to.
I know better, too. One of the reasons I quit singing is because getting jerked around like that started making me sick. And it’s not like the culture of this company even touches on respect or kindness. I knew better. I should have said No the first time. But I didn’t, and what a really great way to start my first-ever vacation.
Seriously, I just want to crawl into a hole and go to sleep and never wake up.
Written by Angela at 3:46 pm - Filed under Our Little World, HomeWork, Diabetes - 2 Comments
I can go for weeks or months without any problems, or at least without letting any problems get to me, and then suddenly the diabetes strikes back - hard - without any apparent warning.
Today ANOTHER sensor crapped out on me before its time. So while I was grumbling and visiting every single room in this … heavenly… house to get my supplies together for another insertion, I called Minimed to find out where my replacement sensors were. They said they shipped them out on the 7th, tracking said that UPS delivered them on the 8th, I hadn’t seen them, long story short: Unicel cut me off at the customary 12 minutes (happens EVERY SINGLE TIME I CALL MINIMED), just as customer service was promising to call UPS. As I’m yelling down the stairs to Jeremy about the call getting cut off, he says, “Oh, what about this box in the basement? Was that your sensors?” (I’ve been wondering where those sensors were, wondering out loud in his presence and even directly TO him, for DAYS.)
He swears he asked me what to do with them. I’m positive he’s thinking about the box before this one, which arrived only two weeks before.
So I try to call customer service back to let them know they don’t have to go to the trouble, but there is now “high call volume”. I transferred myself to sales orders so that I could get the message through (maybe they could e-mail Service, you know?) but they close at seven.
Meanwhile, customer service mentioned that they sent out a full box of ten sensors on the 17th and delivered them to work. I didn’t even know this shipment was coming, but apparently it’s been there for two weeks. I start writing an e-mail that Receiving will get tomorrow morning. But then I thought, if I heard right and the box was shipped on the 17th, that means it was “delivered” on the 18th, which was a Saturday. Work is closed on Saturday, so how did it get delivered?
Of course, I can’t get through to customer service to clarify and/or get the tracking number. So I try to sign in to my online account. It’s not accepting my username. I have that sent to me. Now it’s not accepting my password. I have that sent to me. I get in and find my way to the shipment history page, and according to that nothing shipped on the 17th. A box did ship on the 20th, but that was just my regular supplies. Do sensors even show up on this history page? Did some clicking around and yes, they do.
An HOUR later, I am far more confused than when I started, and there is absolutely nothing I can do about it.
To top it off, I’m running a fever. I’m coming down with a nasty cold - if it’s what Payroll has, which it probably is. And daylight savings time COMPLETELY FU(mmmmm… I guess that’ll just make Jeremy even angrier)DGED my bloodsugar so I’ve been feeling like crap and completely utterly FRUSTRATED for weeks already anyway. Frustrated in the sense that drives my blood sugar up and makes me feel like I’m three seconds away from choking ALL THE TIME.
You try living with this. I DARE YOU.
Written by Angela at 11:15 pm - Filed under Diabetes - 2 Comments
Yesterday was my birthday, and Jeremy’s theme this year was, “Making Angela’s life easier.” He made me dinner and Oopsies, then showered me with presents, many of which were ergonomic supplies for work. For example, he gave me a new mouse. The new slanted trackball mouses are so comfortable. The slant was a new experience, and I’m not used to a trackball either, so the whole thing was a little unsettling, and by the end of the day I was thinking that it would take me a long time to get used to… but then I sat down at my laptop at home and put my hand down slanted off to the side of my standard mouse. Apparently the learning curve is complete!
Another thing I complain about a lot is the fact that the desks at work are designed for six-foot men. No matter what height I set my chair, I just can’t get comfortable - either my shoulders are around my ears (very painful by the middle of the day), or my legs are dangling in midair (again, this gets very uncomfortable very quickly). So Jeremy got me a super-high foot rest (six inches). Between that and the new mouse, I felt like a million bucks for most of the day, and I think that will improve over time. I’m so used to slouching because of my height issues that I’m going to have to re-learn how to sit properly. Once I get that skill back I should be golden.
The big present was a huge effort of love though. It starts like this:
Six months ago I was the first person in my neck of the woods to purchase the MiniLink CGM by Medtronic Minimed. There were some adjustment issues, but overall it has been amazing. The thing is, in order to take advantage of the BG information this device supplies, I had to start wearing my insulin pump in plain sight on my hip.
I’m done with the grieving process over the diabetes, so this in itself was not a problem. But I quickly realized that I would never be able to wear a dress again, since there would be no place to put my pump where I could access my BG info in public. Then, about three months into it, Jeremy and I went shopping. I found this great knee-length fall jacket in just the color and weight I was looking for, put it on, and looked in the mirror… only to see a clearly box-shaped protrusion outlined in high relief on my hip. I took the thing off as fast as I could, hung it up, hung my head, and spent the next half hour sitting on a bench in the mall crying. See, I can control my diabetes now, but it’s still controlling my life. Right down to the clothes I can wear.
A couple of months after that, Timex came out with a watch to control the iPod and iPhone. I was furious. Absolutely furious. I spent days walking around the house screaming, “People with six hundred dollar status symbols don’t even need to bother to touch them in order to use them, but I have a six-thousand-dollar piece of life-sustaining equipment and I am REQUIRED to proclaim to the whole world, I AM SICK!! And I CAN’T DRESS WELL!! Because of this stupid box right out of the 1980s! What the !@#!!! Why don’t I GET TO HAVE A WATCH?! The technology is already there! USE IT YOU —- MORONS!!”
So back to the birthday present (I wish I could find Rebecca’s website, since this was also and idea she left in a comment.)…. Jeremy subsequently spent about a month ferreting out the proper channels, and for my birthday presented me with an official product idea submission to Timex, the maker of the iPhone watch. In it he pointed out that Timex has already developed the technology, plus my pump already has an RF receiver and the MiniLink already has an RF transmitter. He also mentioned that while the target market may be relatively small, the profit margin could be very high, since they could command a high price. (Jeremy and I agree that we’d very willingly pay $500 for such a watch, but I know we’d buy it if they asked more.) And then he pointed out gently but firmly that the most important aspect of this watch would be style, because if it’s going to look clunky-medical, there just isn’t any point.
I got to put the letter in the mail this morning, and we’ll hear whether Timex is interested in our idea within four weeks. God bless my husband.
Written by Angela at 10:46 pm - Filed under Our Little World, Diabetes - 2 Comments
Sometimes I feel guilty that my diabetes isn’t worse than it is.
I mean, in the most important medical sense, I am a full-blown diabetic. When my body attacked my pancreas about six years ago, it killed my insulin-producing beta cells and launched me into a lifetime of chronic illness.
For the most part though, my diabetes makes sense. I’ve always enjoyed a pretty fair connection between cause and effect. I do too much stress eating (like today), and my blood sugar goes high. I skip breakfast and spend the whole day painting the house, and my blood sugar goes low. I do have the occasional bout with an unexplained sustained “high”, but even then my BG (blood glucose - you don’t abbreviate blood sugar because, well, that’s BS) tends to respond (go down) if I manage to convince myself to get on the elliptical.
Our health insurance pays for my insulin, my insulin pump, my pump infusion sets, my glucose test strips, my glucose meters, my continuous glucose sensors…. I’m totally all set. My diabetes is only as bad as I let it get, and I have a tremendous arsenal of weapons trained on it most of the time. I mean, come on, Continuous Glucose Monitoring dropped my HbA1C almost an entire percent in just six months. We’re talking the bazooka of diabetes management.
Most PWD (people with diabetes) have it a lot worse. They do, or think they’re doing, all the right things and nothing gets better. And earlier tonight I was surfing and rode across a blog that asked the question, “Can you imagine having diabetes and not being able to afford the insulin you need?” (Tried to go back and find it, but I have no idea how I got there!)
I haven’t noticed that anyone without diabetes really tries to imagine that, and maybe you shouldn’t have to. But give it a shot just once - imagine that you can’t afford the protein you need to inject in order to live. That you will eat and eat and eat and still starve to death. First you experience an excessive, burning, constant thirst. You begin to vomit after every meal. Then your body begins to consume your muscles, your heart weakens, your kidneys fail, you die slowly by tiny little inches - knowing that they discovered a medicine eighty years ago that would keep you alive. Knowing that there are even technologies that could make that life almost completely normal, so that you’d have a chance to be happy (or not, depending on your choices). But you lie in bed, too weak to move, dying, because you can’t afford that.
I’m not one to consider myself my brother’s keeper. Everybody makes their own choices, and they have the right to stand or fall by them. We tend to think of the wealthy living off the backs of the poor, but the fact is that the middle class does the same thing. I have what I have because somebody else doesn’t. It’s a terrible truth, and there’s not much I can do to change it. I can exercise compassion. I can donate some of my excess wealth to charities. I can’t change the world. And let’s be realistic - that’s true.
I’ve added a link under the Defeating Diabetes heading on the left side of the page: UNite for Diabetes. It will take you to the UN Resolution on Diabetes, a resolution reached last spring wherein November 14th was declared World Diabetes Day. Jeremy’s trying to figure out how to add a banner to our site as well. Check it out.
Written by Angela at 10:39 pm - Filed under Diabetes - No Comments
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