“At Some Point Your Doctor Becomes a Quack and It’s Up To You”

“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! 🙂

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8 thoughts on ““At Some Point Your Doctor Becomes a Quack and It’s Up To You”

  1. I lived w/o insurance most of my adult life (got medicaid 2 years ago – which, if your finances are as rough as you say, you might well qualify for? – My husband had to fill out the forms, so I wouldn’t rip them to shreds with my teeth, but it happened). Much of what you say resonates.

    About doctors. I was raised among them. Grandfather, uncle, father,brother, nephew, cousin, etc. in doctorland (Mayo Clinicville). Somehow my teenage rebellion got churned together with resentment of D, Docs, and Dad. Plus, it was the 60’s.

    10 years into it I had this uber-vivid dream: I am in some line, a long one, in the lobby of the Mayo Clinic. What’s it for?? I step to the side, begin walking forward along it to see where it goes… I see that the folks nearer the front look a bit worn, then missing a limb, bandaged, leaning on each other, struggling forward. Worse and worse as I walk. finally, they’ve become carcasses on hooks like at the meat locker! I recoil in horror. Hear the message, loud and clear, is GET OUT OF THIS LINE!!!

    At that time I knew the docs I saw made me feel small, never good enough, bound for disaster. Every person in his office from the receptionist to the janitor would repeat “Ohhhh
    diabetes. So you have to be careful what you eat, you’ll go blind, lose your and kidneys and feet, poor thing!” -almost like they were showing of their D knowledge? Don’t know about you, but hearing this one time was plenty for me to GET it. I could rarely get my sugars right (1980’s – no meters, no pumps no nuthin’, plus I was bulimic) so there was some deep psychological booby trap these people were innocently nourishing in my subconscious. I knew how very creative our fears can be, so one day I just went AWOL- walkabout. Moved.
    No longer saw medical people, did everything I could do for my health and happiness – ate well, exercised, exorcized my demons, did my best with my insulin regimen, fasted, meditated, studied and got more and more happy and light. I think I resided in the high 200’s and mid 300’s mostly, BG-wise? In spite of which I rounded 32 years of D with nary a “complication” and 2 lovely children to show for it. Long winded way of saying Marshall rocks. And so do you. You are so much more mature than I was when I got D! Email me if you want a pump – we can compare notes on guerilla shopping for D supplies.

    Epilogue: Now at 44 years of D I have a pump, an A1C of 6.4, some retinopathy that’s treated and stable, healthy kidneys, feet, heart, soul, a wonderful husband and a Doc who is pretty much a cheerleader and gives me whatever I need. Not bad!

    • Wow, thank you for the comment. It’s nice to know that it isn’t ALL that bizarre that I feel like I would rather hide from the evil D monster sometimes. I am pretty new to the D thing and most of my shopping for supplies happens at Amazon.com though if I can get into the “Medication Bridge” program at the hospital that will help a lot.

      Marshall DOES rock! There is so much pressure on him (I’m unemployed currently, hence my ability to blog like a mad woman and reply to comments like the wind) and he really does a great job. Bless him for not running for the hills!

  2. I know exactly what you are talking about! Had to call an ambulance for my mother last week because her throat closed and she couldn’t breathe. She spent 5 days in the hospital and they have no idea what caused it. Each specialist has a different diagnosis. Her heart doc told her it was a reaction to her BP meds..Her lung doc told her it was asthma. The ear nose and throat guy said it was acid reflux.I just pray to sweet Jesus she doesn’t go see a gynecologist!!!

    • Geez! This is why I am always so mad for information from EVERY source I can find! I figure you can take in as much as you want and filter through what is/isn’t relevant to you and what does/doesn’t work for you. They only know me from the folder of paper in front of them, notes and numbers from people that have never been with me for more than an hour at a time…

      Don’t get me wrong, I like my doctor and she takes great care of me- especially as an uninsured patient.

      Hope everything works out with your mom!

  3. Hang tight Emilie. There are times that you will realize that the medical professionals are really only there to guild you (and provide prescriptions, which we must respect them for), but, ultimately, things are up to you and your best judgement. It is a very strange experience when the doc says to you, “Well, you’re the boss! You know yourself better than I do.”

    • 🙂 It was shocking for her to tell me not to test then, I mean I assume the more the better, but I also see where she’s coming from. I have a tendency to beat myself up a little bit so I’m sure she just didn’t want me to agonize over the numbers. I think I just need to declare my tests for science (and sanity)!

      Believe me, nothing but respect, Doc. Smile takes great care of me. She makes sure that there is always enough donated insulin to get me to my next appointment, saves needles and test strip samples for me and loves Judah 🙂 (The first time she met him he was frantically alerting and after retesting she discovered my sugar had climbed 100 points during the appointment) Plus sometimes it’s just nice to be able to cry to someone who isn’t feeling pressured by my stresses, she just gives me tissues and sympathy- sometimes (not always, but sometimes) that’s what I really need 🙂

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