I rarely get outwardly mad. It takes a lot to push me to that point. Yet, even if I am angry – I loathe confrontation… And just for fun, let’s throw in that I’m also a professional-level people-pleaser. My disdain for confronting things/people if they make me mad often shows up as a refusal to stand-up for myself so I don’t make anyone else uncomfortable. I have spent my life stuffing down emotions and not confronting anyone if at all possible.
I mean – if you mess with my nephews or my friends; I’ll confront you. And you might not like me or ever forget the encounter. I’m wildly protective of my people.
But make me mad or mistreat me?
Eh. I’m likely to internalize it, spend hours with self-blame trying to figure out what I did to provoke anger or mistreatment and pretend like NOTHING AT ALL is wrong. I don’t love that about myself and never have, yet figured it was just a quirk of my personality and because no one beyond me was bothered, there was no real harm being done.
Well… Turns out non-confrontation and hiding emotions are at the root of my eating disorder and ignoring them (surprise!) really doesn’t work so well… So at 51 I am learning to manage anger, discomfort and confrontation for my overall physical and mental health. After 18 months of therapy, with a really good therapist, I finally feel I have some good tools to use when I do want to express myself. The coping skills, for one of the first times in my life, don’t involve abusing or restricting food.
I went to a new primary doc a few weeks ago. I have been trying to establish one since I moved to Bend. I have struck out. Nice people, general disease management; none of them seem to get my type 2 diabetic past and my desire to stay off of meds. All of this makes me miss Dr. Marske a lot… She and I didn’t always get things right; but she never gave up on me trying to help myself and she always listened to me. Always. I continue to appreciate and better understand what a gift I had in my relationship with this special doctor.
As I briefly explain my history and my desire and efforts to stay off meds to these new doctors, I watch their faces shut down before they even hear me out. Usually around the time I say ‘… I reversed type 2 diabetes by eating low carb and I now run ultras…’ I always think they figure I’m in cahoots with Dr. Google, will grasp on any ‘fad’ and maybe that I’m even trying to tell them how to do their job; which isn’t the case. None of it. I acknowledge that a patient educated in their own disease, their own healing and ardently eager to be a part of the solution might get confused with someone seeking a specific answer/drug/remedy.
I met with this most recent new doc and when asked the reason for the visit, I told her that I was there for three things; a flu shot, survival tactics for perimenopasuse and a referral to an endocrinologist since I was concerned with my fasting blood sugars being higher than I liked (per my own daily testing with a glucometer). I told her I was pretty sure the perimenopausal crap that I’m suffering and the elevated glucose readings are related; but I just can’t seem to figure out the connection well enough on my own to manage it. I admitted I was getting concerned about what I was sure was an elevated – with no stopping in sight – A1c. I told her I was nervous and frustrated because the things I had done to lose 200 pounds, reverse type 2 diabetes and wean off of insulin were NOT WORKING in the same ways they had for the past 7 years.
After a volley back and forth she finally said ‘I appreciate that you are concerned. I don’t feel you should be worried, your daily fasting numbers are well within an acceptable range. But for good measure let’s first test your thyroid just to check things out…’
Sigh.
I was worried about my A1c. It’s a marker I understand well. And I was doing all the same things day to day and the numbers were moving… In the wrong direction. And I know from years of experience that if the daily fasting are too high (the math is pretty simple) the average will be HIGHER – which is NOT what I was after…. My numbers weren’t fine – my gut KNEW it before the blood test would confirm it. I also knew my thyroid wasn’t the issue – yet I appreciate a doc wanting to rule things out with their own tests/eyes/facts. I get all of that. (BTW, snarky side note, ask any fat woman and she will tell you that every doc tests her thyroid as a possible culprit for weight gain. Any. Doctor. All. The. Time. I’ve had my thyroid checked a bazillion times. Even as recently as a year ago – all was well. The ‘thyroid check’ is hotly annoying at this point, AND before anyone jumps me about it; I know it’s due diligence. Doesn’t mean it isn’t annoying.)
As I was listening to this doc work through her perfunctory checklist and essentially brush off my concerns; I was done…
I suddenly realized I was frustrated. And maybe ‘mad’ was starting to surface…
Not at her specifically, but cumulative upset at the health care system that seems set-up to ignore the patients, prescribe meds and – in my uncharitable and arguably jaded opinion – ignore that the WHOLE body needs to be working together.
I am done with docs not listening to me and not taking my experience with this disease into account. I am done with being caught in a disease management system that throws around the word wellness and doesn’t mean anything by it unless they can prescribe it in a pill bottle. I am done with trying to convince a medical professional to be worried for me and to refer me along to someone who specializes in what I live with.
I was not looking to be placated, I was looking for HELP.
I looked her in the eye and said ‘Can you please give me a flu shot. And I agree with you that we should order the blood work so we’re not blindly guessing about my numbers. Thank you.’ I was ready to let ALL the other requests I had floating in the air between us just go away – it was obvious I was going to need to find yet another doctor… Her comment back to me was ‘Even if your number is elevated from the last year; I think the first step is that you need to see a registered dietician so you’re eating a balanced diet and come back to me in six months to re-check your blood work.’
This was the moment I got mad… I felt mad. I felt my face flush and my heart starting to race.
And I decided I was not going to stuff it down this time. So I took a breathe and dug deep and used my new anger-confrontation-communication tools.
I said exactly what I was thinking in calm and even tones. ‘I can’t afford to wait six months. From lots of personal experience with this disease, I know that a dietician isn’t the answer at this point. In fact the Standard American Diet that dietitians are taught to prescribe is exactly what helped land me here in the first place. I can’t convince you that I know I am standing on the edge of life-threatening trouble that I know all too well and I desperately want to avoid again. If I do as you suggest; in six months I’ll be six months sicker and six months further down a road I don’t even want to be on.’
I got the flu shot.
I also got my blood drawn.
And we left things hanging right there…
Turns out my hbA1C (measure of long term blood glucose management) is higher than it has been since I went off of insulin almost 7 years ago. By a lot. I mean I was diagnosed at 11.2. It’s been solidly bouncing around between 4.8-5.2 for over five or six years now. Last week it was 5.9. The measure for pre-diabetes is 5.7-6.4.
I’m technically pre-diabetic again and that is NOT OK…
It is as I feared.
And yet I was and am being told not to worry.
The blood test results, which I accessed on-line simply had a note attached from the doctor that said ‘labs are fine, re-test in 6 months’.
I knew things weren’t right and I’m lucky, on one front, that I have a deep history with this disease and know the basics and when to worry and how to keep pushing for help whether she agrees with me or not. I’m also lucky that this isn’t my word against the world; the blood numbers along with my history with a metabolic disease backs up my concern – and in the right hands that specific information will spur some action and concern. I just have to find that doctor.
I’m still mad. Mostly at the system. But maybe a little mad at the specific doctors that won’t take me seriously and won’t listen.
At the same time all of this was happening I finally and fortuitously connected in real life, via a multiple year Facebook-friendship, with Dr. Mark Cucuzzella in West Virginia. Dr. Cucuzzella is Air Force Reserve Lieutenant Colonel and a Professor at the West Virginia University School of Medicine. He hosts and teaches healthy running medical education courses. He’s also has MODY (maturity-onset diabetes of youth) and he’s an ultra runner. Long ago I reached out on a social media forum asking for advice on eating low carb while also training for and running ultras. He had some really helpful insight and practical solutions that focused on being able to run yet knowing that the end-game was really about steady control of my blood glucose long term.
Dr. Cucuzzella recently invited me to be a part of his healthy running gathering this past November. It was an amazing educational experience with lots of fantastic new connections forged. We finally got to meet face to face. It was awesome to meet one of your long-time advocates and champions in real life for the first time.
So here’s the behind the scenes LONG story short: Dr. Cucuzzella listened to an abbreviated version of my growing frustrations about docs/blood sugars. He said he thought he had a solution for me. He prescribed a Continuous Glucose Monitor (CGM) so that I could do some of my own detective work to figure out what the heck is going on with my blood sugars. I wear this device on the back of my arm 24/7 for 2 weeks at time and monitor, via an app on my phone, how my blood sugars trend given my diet, activity, stress. The ultimate outcome? I should be able to self-correct and adjust my lifestyle choices to get my hbA1c right back down where it belongs. I now have real-time data that I allows me to alter or change things I am eating or doing based on legit, real-time feedback. I’m a week in to this experiment and have collected really interesting data points and implemented some simple changes. It’s empowering and fascinating.
Keep in mind, while this is HUGE for me personally and I’m beyond privileged to have made the connections, taken this trip and to be able to afford to pay for this tool OUT OF POCKET to get the help I need… I had to go from freaking Oregon to West Virginia to find a doc who would listen to me.
But how many people are lucky enough to have a Dr. Cucuzzella in their lives?! I know I have the luxury of insurance. I have the privilege of being able to pay for minor things out of pocket when a doc says it’s important and insurance says ‘not so much’. I know all of that. I take NONE of that for granted. And the fact that this preventative measure is NOT covered by insurance is a WHOLE OTHER blog…
I remain deeply concerned that people have to be their own strident advocates. I remain baffled as to why a system would continue to dissuade/dis-incentivize medical providers from focusing on preventative or lifestyle measures that work. They have scientific PROOF that these lifestyle interventions WORK…. This isn’t voodoo science – they have the data!
I’m upset that the ‘system’ seems content to wait until something has to be prescribed.
I intellectually knew that our health care system is profoundly broken; but I guess this is me arriving waaayyyyy late to the party to say; HOLY SHIT IS THIS BROKEN AND WHAT CAN WE DO ABOUT IT?
I’m standing up for myself and not accepting ‘wait six months’. I’m taking my health back into my own hands.
Yet I’m scared for the people who won’t stand up for themselves or patiently wait simply because they’re paralyzed into overwhelm by the options or are too sick/tired/depressed/scared/poor to keep pushing back on the system…
Or that they trust that the system is doing what’s best for them…
What about them?
I wasn’t asking for a prescription to a controlled substance or to cheat the system or even for a silver bullet. I was asking for help in figuring out why what had worked for so many years was NO LONGER working…
Instead of bottling it all up this time around, or simply being an ostrich and ignoring what’s happening or even choosing to be naive and assume things would ‘work themselves out’, I said what I thought and stated what I needed. I’m very proud of myself for that victory alone. I left her office and went for a run. I got the CGM. I’m collecting my own data and already making tweaks to keep those numbers in a healthy range on the day-to-day. I’m reaching well beyond the confines of our traditional insurance/medical system to get the help I need to stay free from type 2 diabetes…
And yet again I am looking for a new primary doc to work with me.
** 12/2/2019 on the news, as I am writing this blog, they quoted a CDC report (here) that 18% of US Adolescents (12-18 years old) have pre-diabetes. THIS USED TO BE ALMOST EXCLUSIVELY AN ADULT DISEASE… The #1 intervention for prevention/reversal at any life stage for pre-diabetes is lifestyle changes… Preventable. Docs and other folks in the health care system writ large have GOT TO get this prioritizing prescriptions over lifestyle changes thing figured out. Like yesterday. We are running out of time. Lifestyle adaptions and interventions should be the norm; not pills in a bottle… *Stepping off of my soapbox*….
all bets are off... 