When is it enough? When have we seen all the doctors we need to see, added all the meds we need to add, had all the surgeries we need to have, and done all that we can for our bodies? I am miserable this week. The endocrinologist feels I need to lose weight and get better control of my blood sugars. He put me on a med that does both things.

Here’s what that looks like…. I have zero appetite. Five out of seven days during the week, I am eating one small meal a day at best. I am constantly nauseated. I am burping up godawful burps from hell. My blood sugars are now TOO low. I have had 6 urgent lows in the last 2 weeks where I have to force myself to eat sugar so it doesn’t drop below 50 (dangerously low). All in the name of getting my diabetes under better control when it was doing just fine prior to this. My labs were in target range already. Why?

I have a history with endocrinology of being labeled non-compliant. I refused to eat their crazy diet of all organic meals. I refused to go through 12 months of psychotherapy to discuss my non-existent problem relationship with food because I clearly have issues according to them. I refused to experiment with my medications to get off my insulin pump because they felt I could when the insulin pump was working. I refused to do gastric bypass surgery so I could lose weight and my diabetes would magically disappear. Our relationship has been rough since the early 90’s. According to them, I do not play nicely.

I am also facing surgery number 23 in a little over a week. My care team and I have decided to remove my uterus due to an elevated risk of endometrial cancer and cervical scarring making it impossible to get a biopsy without going to the operating room. A completely necessary procedure but still exhausting. I have already made the determination that I will not be doing any more orthopedic repairs for torn tendons. They will just tear again anyways.

So when and how do we have the discussion with our doctors about quality of life vs prolonging life? How do we broach the subject to say I have had enough? We all need to navigate a delicate balance between advocating for ourselves, being “non-compliant,” and working with the doctors with very little actual research-based treatments. I feel as though the doctors are throwing treatments at the wall sometimes to see what sticks while we suffer the consequences. I know this is not true but it still feels that way.

I don’t expect answers to my questions. We are all new to navigating care for Myhre’s at my age. But I do expect compassion and understanding when I do say ENOUGH! I will demand no less from my care team.