Today my doctor called me back and was off in her ideas and suggestions to me, and mostly the timing of them, in a way that was kind of hilarious to me. She was just so out of context.
Basically, a few months ago, I was having problems with insulin absorption from my pump sites, resulting in high and up and down blood sugars, occasionally ketones, and therefore feeling shitty, physically and mentally/emotionally. Went on shots for a few months, which was better but made exercise, especially longer workouts, really hard to manage. Three weeks ago I started back on the pump, and overall things have been going well, but I've been having a lot of lows. These are mostly exercise related, since it's been easier to do a lot more of that with my pump back than it was for me on shots. Also, it is summer and I tuned up my bike.
But anyways, I said something about being able to exericse more, and she was like, yeah, it must be easier and you must feel much better without all that ketosis! Ha ha ha. That was um, about 16 weeks ago that my pump wasn't working and I had ketones. A lot has happened since then. If I had ketones for all that time, she definitely would've heard from me again. Slash I would be REALLY frustrated and sick and ended up on sick leave from my job or something. What I meant was because of the pump vs. shots in the last 3 weeks making it easier to exercise, not the no longer having ketones thing from bad pump sites months ago.
I don't fault her for that; it wasn't like she was being negligent to my health. And some of the things she said may be relevant if problems come back (hopefully they won't). I hadn't asked for continued help because I was doing better, and she was actually calling me back about something else, a basic logistical question about getting my next A1C (that's a routine diabetic blood test, for you folks that have internal automatic pancreases and are challenged on this lingo).
My diabetes is mine; it's a little weird to negotiate intrusions on that. Usually I think I am right to react in a way that let's people know this is my business and my body when they are intruding in a way that I find unhelpful or annoying. This doesn't mean it's off limits and noone can talk about it except me (in fact, I like it when friends or acquaintances are comfortable talking about it), just that I get to make the decisions, and be the expert. It's my body, and I have a lot of experience dealing with it, and generally know what I'm doing (or if I don't, probably you don't have the magic-bullet solution either).
With my doctor (and I mean my doctor that manages my diabetes, not all of the assorted people related to me that are doctors and bubbling with ideas about parts of my diabetes that they sometimes have no idea about), I definitely see the need for this shift, letting her in, it just is funny to figure out sometimes. Back when I was having the absorption problems, I felt like I was a little kid regressing and begging for her to hold my hand when I read her all my numbers and got help on dosing - it felt kind of wrong, even though it was probably necessary.
She has knowledge and skills that are different and help me, whether it is her training/experience or just another perspective from someone else familiar with the issues. She recognizes my expertise on my own body, because she is a good doctor and respects me*, but also because she is forced to because I just know so much more than her about what's going on. She needs my knowledge and assessments and details to even think about understanding anything or making treatment recommendations. I think this is one thing that might differentiate the relationship between type 1's and their healthcare providers (and maybe other folks with chronic issues and their providers?) and the way a lot of other people's relationships are with their healthcare providers. It is so constant and intensive and hundreds of decisions are necessary day-to-day, when the doctor isn't around, that the person with type 1 has to be recognized as an expert. Of course, I think healthcare would work a lot better for most people if providers ALWAYS recognized (and respected) the patient as the expert on their own body. And probably their are a lot of doctors that are bad at this even with type 1's, and don't do this even when it is painfully obvious that it's the case.
*hopefully this is how she treats all her patients, and this respect isn't just from me being well-read on my issues and considering nursing or medicine as a profession
EDIT: Another diabetic blogger just posted a news story that's a lil' empirical evidence for what I just wrote about, that obviously the person with diabetes is the expert over the doctor. Interestingly, this study on insulin dosing was with type 2 diabetics, who usually (not always) have less intensive medication and testing regimes than type 1's.
Thursday, June 28, 2007
Thursday, June 21, 2007
fuck you, bush
Bush vetoed the embryonic stem cell funding bill for the second time.
I'm not that into exclusively cure-focused diabetes research as much stem cell research is. And I also am not so into the recent stem cell research findings that came out a few months ago in which they were able to reverse early stages of Type 1 with intensive chemo to kill the immune system and then a stem cell transplant (more on these things soon, I have posts on them that I just haven't finished). However, I think this research should happen, and especially for issues besides diabetes that are less treatable. But mostly, the justification he has just really bothers me.
This 'destroying human life' bullshit that he says pisses me off. It's like, what about my life? You're choosing balls of cells over me? If you want to talk about ethics, let's bring this into focus. I am here, a person, living right now, as are millions of other diabetics and people with other conditions that could benefit from stem cell research. If you care about preserving human life at any ridiculous cost, why not work on those cases that are already a real live life? Instead of those potential little things sitting in freezers not going anywhere. What, it's not worth 'saving' damaged goods like us?
EDIT: As 'Artificially Sweetened' reminded me, the bullshit here is especially obvious when you remember he didn't give a shit about the value of each and every human life, of US troops or Iraqi civilians, when we went to Iraq and bombed everything.
By the way, these vetoes were 2 out of only 3 that Bush has done his whole time in office. Boy, he must really love those frozen balls of cells that are just sitting in freezers (I'm probably going to get on the anti-abortion anti-embryonic stem cell research hit list for saying that, oops) , good thing he's SAVING all of them. He's saving their little lives. What a savior, don't you just love him?
I'm not that into exclusively cure-focused diabetes research as much stem cell research is. And I also am not so into the recent stem cell research findings that came out a few months ago in which they were able to reverse early stages of Type 1 with intensive chemo to kill the immune system and then a stem cell transplant (more on these things soon, I have posts on them that I just haven't finished). However, I think this research should happen, and especially for issues besides diabetes that are less treatable. But mostly, the justification he has just really bothers me.
This 'destroying human life' bullshit that he says pisses me off. It's like, what about my life? You're choosing balls of cells over me? If you want to talk about ethics, let's bring this into focus. I am here, a person, living right now, as are millions of other diabetics and people with other conditions that could benefit from stem cell research. If you care about preserving human life at any ridiculous cost, why not work on those cases that are already a real live life? Instead of those potential little things sitting in freezers not going anywhere. What, it's not worth 'saving' damaged goods like us?
EDIT: As 'Artificially Sweetened' reminded me, the bullshit here is especially obvious when you remember he didn't give a shit about the value of each and every human life, of US troops or Iraqi civilians, when we went to Iraq and bombed everything.
By the way, these vetoes were 2 out of only 3 that Bush has done his whole time in office. Boy, he must really love those frozen balls of cells that are just sitting in freezers (I'm probably going to get on the anti-abortion anti-embryonic stem cell research hit list for saying that, oops) , good thing he's SAVING all of them. He's saving their little lives. What a savior, don't you just love him?
Labels:
anger,
diabetes,
research,
science/medicine,
stem cells,
type 1
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