“At some point your doctor becomes a quack and it’s up to you.” -Marshall
This little quote was a gem from Marshall after I expressed a bit of distress over a conversation I had with my doctor at my last doctor’s appointment. After downloading my meter records and reading them over she questioned why I had tested so soon after eating and so close together. I explained that I spike very high after eating and I was trying to figure out a pattern so I could better time my insulin doses. She seemed to think that this was unnecessary and perhaps even detrimental. Now this response surprised me, I figured she would hear that I had taken this initiative and be proud of me, well that just wasn’t true. She (we’ll call her Doc. Smile) told me that I shouldn’t bother to test so soon after eating, that I should only wait until at least two hours after I eat.
Now I completely understand what she is saying, that to get a true post meal glucose reading after two hours, but that’s not what I was trying to do. I was trying to figure out the best timing for my insulin to prevent the ridiculous spike after eating (often up to nearly 300 sometimes over). Really the only way to do this is to test, test, test, calculate, and then try again! Doc. Smile told me not to bother, that this was a waste of strips and that I would just make myself crazy. Now, I like Doc. Smile. She is a very nice lady, very caring and clearly wants the best for me (she actually gave me $20 once to fill a prescription because I told her I wouldn’t be able to fill it until I got paid again). That being said, I often feel like I am not getting the information I want, or not enough of it. It’s not that I feel like she is rushing in and out of my appointments, in fact it’s not like that at all, she is very attentive and willing to talk. She asks about jobs (or lack of), health insurance (or lack of), my relationship with Marshall, my state of mind, Judah, life, and what prospects I have in my life.
It’s not that I think that Doc. Smile is purposefully withholding information from me or that she doesn’t want to take the time to have the conversation but I do get the impression that she is worried about overwhelming me. Now I understand the principal behind that but what she doesn’t know about me is that I crave all this information, I want to be drowning in information! I would love to need to bring a tape recorder to my appointments because it’s the only way to take in all the information (my grandmother does this when she goes to my grandfather’s appointments at the VA). I’d love to feel a little overwhelmed with all the information I’m given, I’d love to be reeling from facts, numbers, articles, math equations, and suggestions. I’m sure there are plenty of people out there that don’t feel the same way as I do, that want the information fed to them like a slow IV drip, not me- pour it on!
Now, in a type 1 diabetic lack of insulin is the primary “issue” but there are other hormones produced by areas of the pancreas that are also lacking. These hormones affect food digestion (speed and release), glucagon production, reduction of appetite, and tell your brain you are “full”. So, it’s not as easy as “give insulin for the carbs I’m eating and call it good” there are a lot of other influences that help to regulate the glucose in the blood stream. So… by testing so soon after eating I’m trying to understand how to compensate for the other hormones lacking in my body. I have read several times that any glucose above 140 mg/dl causes long term damage. (I know that the acceptable glucose range is different for all patients and depends on a lot of factors. Children in particular tend to have higher acceptable ranges to reduce the risk of low blood sugars, kids have even more factors that influence their glucose control (i.e. growth hormone, high activity level, uncertainty of food consumption etc.) show staying a little higher is safer and can be adjusted as they age and change.) So… it seems that not wanting to spike out of range is a totally reasonable desire, I would like to limit my chance of complications as much as possible. This means impeccable glucose control at all times of day, doesn’t it?
So when do we decide to make our own decisions in our care? When do we start to filter the advice we are given along with the things we’ve read or even experienced. Well this is what I struggle with, really I’d love to take my “Think Like a Pancreas” book by Gary Scheiner (my bible) and throw it down on the examination table and say, “This is the kind of control I want, this is the kind of understanding I want of my disease”. Now, that being said I also have no insurance so actually getting that level of control is truly unrealistic at this point, but that doesn’t mean that I don’t want it. I don’t have a CGM or an insulin pump, I don’t have a whole lot of “disposable” test strips (not that they are ever really disposable but I hope you get my point) or even the opportunity to get these things, but a girl can dream right? What is an option for me is gathering as much information about how my body does what it does and learning how to mitigate any negatives complications whenever possible.
So as I completely understand her concerns about making myself crazy with bad numbers and conserving test strips I feel like Doc. Smile might not understand why I feel the need to have all those readings. I know she doesn’t want to limit my ability at control, I know she wants me to live a long healthy life but when do I begin to make these decisions for myself. When do I stop asking what I should do and tell her what I am doing? Well I expressed this question in the comments section of another blog that I follow (<– yay me! first time I have ever used a link in my posts!) and both responses I got were relatively in line with how I was feeling (with a nicely mature outlook, thanks to a couple moms with diabetic kids). Sure everyone understands where Doc. Smile is coming from and what she is saying but it was nice to have a little back up about what I was after as well. I have thought a lot about what I can do to truly have the slightest control over this disease and the truth is all I can do is gather information, draw conclusions, try something new, and repeat.
Well after my blog world discussion of this “situation” and some more thinking I began to share it all with Marshall. Now Marshall is a very matter of fact, realistic (slightly pessimistic), caring, and playful person. Marshall is also always ready to support me (though as we struggle through being incredibly broke there is some tension, but we keep plugging along) and often admits that he doesn’t have the answer to the diabetes questions I have but he will trouble shoot with me anytime. He didn’t even hesitate on this one, he simply stated, “At some point your doctor becomes a quack and it’s up to you. You live it everyday and it’s your body, so you decide what works for you and tell her what you are doing. She can take the information you give her and make recommendations but you still get to make the decisions”. 🙂 Well shit, that’s a way to give a girl back control!
I have been struggling with the lack of control in my life (control freak!) since my diagnosis and it has been the principal issue for me. I can get used to the counting carbs, taking insulin, checking glucose, etc. but the fact that with all that work it still controls my existence and takes other things away from me is completely unacceptable to me. I am a planner, when I get up in the morning I decide how my day will do and I execute it as such. With diabetes it just doesn’t work that way, period. It’s a lot to swallow and having Marshall give me permission (though I didn’t realize I needed it) to take at least the choices back in my life has given me a little lift. He is right, at some point it’s my life and I need to take responsibility for it. I need to decide that perhaps I have a better understanding of what works for me and it is Doc. Smile’s job to take that and make professional suggestions and provide new information. It isn’t like Marshall thinks she can’t do her job or isn’t taking care of me, but he was recognizing in me the distress I had over waiting for someone else to tell me what to do. So he gave me a perfect Marshall quote to hold onto and move forward now that’s love!
P.S. I know I haven’t had pictures in a lot of my posts lately (no camera) so I promise to start snapping more pictures (with my mom’s camera and maybe Marshall’s camera phone) so that it isn’t so much text to wade through! Don’t give up on reading about us just yet! 🙂