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Not in a Vacuum.

It seems like the full assessment of my diabetes is only found in my paperwork, in my lab work.  But diabetes is more than that.  This video is a quick and dirty buzzword-laden rantish type moment about whole person care and how it’s not yet a “thing” in the land of chronic illness … but it will be.

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  1. Amy #

    When our son was 6, he suddenly, with no change in type or quantity of food, or any change in activity levels, after a prolonged run of colds & other illnesses occurring around the timing of his birthday (Xmas eve) & Xmas, gained from a 6 slim that I had to pin up on him, to a 12 husky that was tight IN ONE YEAR. Right after he turned 12, he got sx of diabetes, & one of the 1st things the pedi endocrinologist asked was if, at any time, he had been normal size & what had happened. I told him…he said that illness was when he got type 1 diabetes. I was surprised. I’m a nurse…I’d never heard of such. He explained that our son’s body had started killing off insulin & glucagon, because the viral illness looked like the insulin (& glucagon) secreted from the Beta cells. ..& that the last 6 years, his pancreas had created screeds of insulin to try to stay ahead of the antibodies.. .& had just failed. He’d have to take insulin & carry glucagon the rest of his life. He told us that insulin caused the weight gain. He indicated this fact was ignored by way too many endocrinologists. And he said we’d be in for a roller coaster ride of lows when he had a growth spurt & the endogenous insulin was enough, to highs requiring constant correction when he wasn’t growing because there was no extra endogenous insulin…might not be any at all, in fact. And so we started avoiding telling anyone who didn’t absolutely have to know, that he was a type 1 diabetic. Even doctors decided he was really a type 2 & that losing weight would “cure” the diabetes…that he’d have to go hungry & learn to like it. They’d 9even discontinue his insulin Rx that was written by a specialist…or try to. I asked them to.call the endocrinologist first & ask, that I’d give permission over the phone & they could discuss it. Of course, the endocrinologist could really dig into imbeciles like that, even threatening to report them to the state Board for malpractice, for interfering in my son’s treatment when they didn’t have the credentials to do so. One of these twits was an incompetent who threw my husband out of her office for the sin of asking her a question about something he didn’t understand…marched the poor, sick, bewildered guy down to her boss’s office & refused to take care of him, saying that she wouldn’t stand for being treated so disrespectfully. The boss, apparently used to her tirades, gently but insistently guided her out of his office, said he’d take care of it & why didn’t she take a break & get a cup of tea & let him fix things for her…she never even noticed he was patronizing her, treating her like a spoiled brat whose parents would be offended if she was upset. He comes back in (after locking the door) & asked my husband, “What did you do…tell her you were allergic to a medication she wants to prescribe? Tell her you had an allergy reaction? Ask her a question about something you didn’t understand?” He said it was the last one & got reassigned to the best doctor ever. Later, I had a severe allergy to a statin class of drugs & trust me, Big Pharma’s has most doctors…in fact, nurses & pharnacists, too…saying, “There’s no such thing as a statin allergy,” like a bunch of puppets. She did report it to the adverse events line even though I told her I’d do it when I got home, but I wanted her to know for sure. Then she starts shaking the receiver in my face, saying that she’d reported this even though there was no such thing as a statin allergy, that she’d be humiliated over it, was I happy at how I had ruined her medical reputation . I guess she’d been told she was at her limit for trotting patients to her boss’s office for some imagined slight, so she stopped short of going on…so I said that I would’ve done the reporting from home for her, but that I really appreciated her calling them, esp. since she was so convinced I was ruining her rep…she missed with the receiver & I suddenly realized the line was still open, no dial tone…people were listening to this! I guess they got their laughs…but when I got home, I cslled the insurer & asked to go to the doctor my husband had, she’s great! The last straw was her insisting Sam was type 2 based solely on his size, without paying any attention to the positive insulin antibodies. I figure she must’ve come there from a duck farm.
    Of course, everyone always has to fix things that aren’t theirs to fix, so I learned to call it autoimmune diabetes, v. type 1. it sounds more exotic. Most people have no idea how to “fix” Autoimmune diabetes even though they’re experts on type 1 or juvenile diabetes…& of course, on type 2s like me (I developed it when I had added my 14th or so autoimmune condition to my “hypochondriac list,” & my pancreas felt left out & alone & so sad & forlorn that it had to give me something else.)
    So…we’re both numbers, my son & I. Not people with feelings…I refused to use pills, the pain shoots my sugars way up & you can’t fix that crap with pills. So they’re convinced I lost my last marble ages ago. After all, who volunteers for shots? How about a nurse who’s seen way too many people with out of control diabetes? Nah…that isn’t possible…but oh yes, it is. Besides, I have 22 allergies, why would I risk taking those pills & end up with DKA all the time? For all I know, I could have LADA (type 1.5 – Latent Autoimmune Diabetes of Adulthood. They might have a new name now). But we both get tired of, “Your numbers are…” followed by kudos or lectures, but not a “How do you FEEL?” We have a nice long adjective list: ticked off at being a set of numbers instead of a person, angry at the disease & yes that’s notmal, tired of carrying insulin, glucagon, meter, strips, lancets, vials & syringes or pens, pills, not allowed to have treats once on a while, treated like it’s our fault for being fat…that endocrinologist has a solid argument about fat being a likely precursor in a developing type 1 diabetic situation. ..what if fat isn’t causing diabetes…what if we have latent diabetes that makes us fat before it shows up as a full blown problem? But then, if they admitted that was sometimes the case, how would the makers of ever-growing diabetic food plans, special diets, exercise programs, supplements, etc., make money? Diabetics are a bigger cash cow than cancer patients, & when you’re talking expensive treatments & fancy drugs with large price tags, THAT’S saying something. I worked in medical research for a while, back when external pumps were new & the size of a VHS tape, internal pumps were in early experimental stages (& aren’t much further around now), & when our son was diagnosed, they had an experimental protocol for beta cell transplants in newly diagnosed type 1s & the program was looking for volunteers. We’re still sticking fingers even with the 2nd or 3rd Gen of the original Glucowatch, because we have to make sure that thing irritating our skin is getting enough interstitial fluid for an accurate result. If they cure us, a lot of people will have to find another disease to cure…how about one of my 23+ autoimmune diseases, some of which are still not viewed as “real” illnesses (CFS/ME, fibromyalgia, Sjogrën’s…)? How about we quit acting like they aren’t real? Then if they cure diabetes, they have something else on which they can make money.
    OK, so, that’s my rant. Congrats on your pregnancy! Our son came along after 11 yr. of infertility, a blessing in every way & our gift from God. You have a miracle in you. That miracle isn’t a number…& hopefully you haven’t been told to abort your baby because of your condition like I was told to abort mine. If anyone suggests it, you tell them where to go & the fastest way to get there, ok? =D

    05/6/16; 3:35 pm
  2. I’m actually quite surprised no doctor has ever asked you “how are you feeling?” (Or do you mean only after receiving your A1c result?). I get it all the time. Well, actually it’s more of a “Hi, how are you doing?” at the beginning of an appointment, which always leaves me puzzled -wondering if it’s an invitation to spill the details or just a friendly greeting.

    But I can tell that something must be on your mind and weighing you down, because you are speaking more slowly than you ever have before. (Yes, folks. In Kerri’s world, that speech cadence is on the slow side. It makes me want to ask how you’re feeling and to reassure you that everything’s going to be alright.

    05/6/16; 10:44 pm
    • My coffee intake is all-but-nonexistant. Hence the normalized speech rate. 😉

      05/7/16; 4:47 pm
  3. Juliana #

    Kerri, I love your “rantish type moments”. I wish we could rant face to face.

    05/7/16; 2:14 pm
  4. Thank you for this Kerri. I so agree with all you said. I know from my life with type one, as well as many other experiences, that the mind and body are so interconnected and so influence each other, it’s astounding that’s not addressed more directly still.

    I rarely go to doctors as I find they’re not as helpful (with diabetes at least) as others with diabetes are, but I choose ones who will look me in the eye and really listen when I tell them how I’m doing.

    Of course it’s different when you’re pregnant…I think if we all continue to let them know, through our words and actions, that we must be looked at as whole people, not simply our numbers or our illness, there will continue to be a change, however slowly it happens!

    Thank you for your work helping move us in this direction! You inspire me.

    05/7/16; 2:34 pm
  5. Brenda #

    I am T2, but I have followed your blog for quite awhile. I don’t think the feeling of being a set of numbers rather than a person is limited to just T1, or diabetes. I think that healthcare has become a big dollar industry in this country, and since there is no profit in asking you how you are feeling or coping with something, no one in the healthcare industry is going to waste their time doing it. (And I realize I am a cynic, but I personally don’t believe any healthcare professional I have dealt with in a long time has actually given a shit.) As someone who is also chronically ill, I appreciate your speaking up about this, and congratulations on the new little dude.

    05/9/16; 6:26 pm
  6. Sharon #

    The vacuum thing applies to kids with T1d as well. Sure, the A1c moved since last appointment but might it be because it’s a new school year with a new routine? When he misbehaves, it could be a BG issue, or it could just be age appropriate (and socially inappropriate) behavior? He can just be a kid, with all the good and bad without it needing to be a diabetes issue. I feel like I am constantly explaining that he’s a kid who loves X, Y and Z and, oh yeah, has T1d too. Kid first!! Life is so much more than diabetes, at any age.

    05/11/16; 2:08 pm

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