I haven’t entirely felt inspired to write/blog much lately (obviously!); however, my recent circumstance feels ripe for a chronicling.
I. Am. Fed. Up.
I am SO frustrated – and it’s both a good and bad thing. Of COURSE I don’t enjoy feeling frustrated, angry and at a loss BUT I think it may also be just maddening enough to help fuel my fire.
**Please note – this is just MY story/experience and I do not recommend doing anything with regard to changing your own diet, exercise, or medication plans without consulting your own doctor.
Somewhere around 7 years ago I was (first) made aware of increased hemoglobin A1C or HbA1c levels (A1C). You can click the link to read more about it – but if you aren’t aware of it, A1C is essentially a test which measures the percentage of red blood cells that have sugar-coated hemoglobin, across (appx) a span of 3 months (90 days), historically. Back then, my levels were somewhere around 5.5 – 6.5 at any given test (I get checked about every 6 months through blood labs), so my doctor put me on oral medication. Unsurprisingly, the doctor also recommended I quit smoking, lose weight (generally), increase my exercise routine and revamp my nutrition/eating. I was still considered by my medical team to be in the “pre” diabetic range, and thereby didn’t require as much monitoring.
Now, mind you, prior to my 30s, much like many others 20-something year olds, I thought things like this couldn’t harm me, and I will be the first to admit I did none of the recommendations, at least not with any degree of consistency. I haphazardly took my medication (if I remembered), I didn’t cut back or change any of my eating or drinking habits, and I kept smoking.
Over the course of the following 3 years my blood sugar and A1C were (what is considered) “managed” and I kept getting “higher than normal” levels in labs, creeping up and up, but not doing much about it. Each time my doctor would say the same things, and sometimes I would get assigned a nutritionist who would tell me the same things I already heard/knew…both in the arrogant, egotistical sense, but also in the “common sense” and I honestly already knew it way. I had the “finger prick” monitor for a while, but didn’t want to do it and didn’t think it was important, so I let that slide and kept doing what I was doing.
Sad to say, it was not my health that caused me to actually tackle my weight and working out (and as a byproduct my quitting smoking), but my vanity. April 2018, I saw myself in a photo that shook my world. I was (in my own opinion) horrible looking. Overweight, and hardly the “me” I hoped to be. It honestly was the “cold water to the face” I needed that made me change things up. I worked out, I ate better, I drank (slightly) less, and stopped smoking (the smoking took a couple tries, but we got there). I lost about 15lbs over the course of the following couple of years, and yet one thing remained…my ever increasing glucose and A1C.
This is the part that is frustrating (in case you were wondering where ALLLLLL that previous story was headed)…
Over time, even though my weight was going down, including body fat, visceral fat, and the other “markers” of Type 2 Diabetes, my diabetes was not in fact “managed” well. Every time my A1C increased, my doctors just said “increase your dosage of your oral medication and lose some weight”. Well, by now (2021), I am well into the weight loss, I am legitimately running half marathons, and things aren’t improving. My weight is creeping back up, and yet all I hear is “lose weight”.
Here we are now, in 2022. For reasons outside of my own needs I got lab work done in March 2022, and my A1C was higher than ever…beyond the “pre” diabetic range and well into the full blown Type 2 Diabetic ranges, at 7.5. This was especially frustrating, because having know the March test was coming, I had taken a full month off of drinking any alcohol, worked out hard (even did a half marathon in that time with a full training cycle), and taken supplements to try and help, all to (obviously) no avail.
May 2022, my routine diabetes labs come back, and now I’m up to 8.6, since MARCH!? WTF. Now, also joining the fun was high cholesterol and triglycerides.
Frustrated, I call my doctor, who (a week after my lab results) tells me what I already know, my diabetes is raging out of control. The doctor wants to put me on cholesterol medication. They also want me to start the finger pricking/daily checks.
- I ask if I can get prescribed a CGM (continuous glucose monitor) to which the doctor says no.
- This is do not understand. I am clearly not able to get a read on this, and a tool that will provide real time 24/hr monitoring without pricking my fingers can’t be provided? I don’t want or intend to be using one forever, but with my lifestyle and historical data, I do believe it would be useful.
- Doctor says they will send me the cholesterol medication and the other items needed to test my levels at home BUT the monitor itself cannot be issued until I come into the clinic to get training on it. Sure enough, within a week I get the meds and monitor supplies, but no monitor. Fast forward three weeks later, still no appointment (or even contact) from the doctor to get me in to GET my monitor.
- Love this. I get the doctors telling me to do better, and I’m trying, but if I can’t even GET the tools in which to get better, well then what’s the point? Here we are, almost a month later, and I am just spitballing and guessing about if the actions I am taking have actually helped.
- The “diabetes specific pharmacist” referral was done – BUT – can’t speak to them until mid June. “Diabetes nutritionist” referral also came in, but can’t get in to see them until early July.
- Much like above – what exactly is the point of all these things, if I can’t even get started?
Since my newest “diagnosis” and my inability to get the things I need, I have been fuming. This anger has helped me though to stay focused and motivated.
- I ordered a food sensitivity test (the blood based ones). I submitted my test and found that two foods I eat routinely are my highest flags for intolerance, 1. chicken, 2. wheat and 3. eggs (both whole and in part). I would THINK that would be a good starting place, for my doctor and “nutritionist” to start, to rule out what I can NOT eat, or should be limiting. Finding out what is causing gut inflammation and irritation so as not to make things worse. This is just my own thing, but I believe in its importance.
- I subscribed to a CGM service, which are all over the internet nowadays for those health and fitness types who don’t have diabetes. It’s not cheap though. I’m hopeful my FSA will pay me back, but either way, I’m doing it for at least 3 months. I refuse to accept that outdated, antiquated methods which require me to cart around absurd amounts of crap are the best way for me to exist AND the most sustainable. I believe people’s lifestyles should be taken into account in the treatment plan, and (to me) the ease of putting something on once every 2 weeks and getting constant data streams on my phone to show me what is or is not working for my body, is incredibly relevant.
- I have edited my diet to include less chicken and eggs, less wheat based carbohydrates, and less alcohol.
- Due to OTHER issues, running is off the menu for the time being, but I am still doing stationary biking, walking, yoga and weightlifting 3-4 times per week.
- I am getting cupping and massage done at least once per month.
- I am taking my medications without fail, as prescribed
The part I find absurd is that (to me) it feels as if my doctors only want to “bandage” the situation. There’s NO talk about reversing the diabetes. I do believe it is reversable, and if not completely, at least I can get my A1C, cholesterol and triglycerides down to manageable levels. I may never be able to change my insulin reactions/insulin sensitivity, but I think it’s worth a shot. I don’t think increasing my medication or just heaping new ones on top is the answer and I am angry now, angry enough to want to reverse my diabetes (mostly) on my own just to show them they are coming at this the wrong way.
I’d rather die trying than accept a life of endless pills, countless wasted dollars and discomfort/side effects of medication that leave me feeling worse. Stay tuned to see how this progresses!
**I am not accepting medical opinions, referrals, or unsolicited medical advice, please. Thank you.