What with all my surgeries these last few years, I am a bit partial to holding on to my blood. I mean, I just am. I realize that Cowden Syndrome comes with a lot of blood work (including managing my Vitamin D levels) and the other labs vary from time to time. I have had to learn to be an empowered patient, or engaged patient, or electronic patient, basically any appropriate (medical) word beginning with “E” and in front of the word “patient” would be me. 🙂 I have to add that I still hate identifying myself as a patient though.
This morning I was due to get my levels of Vitamin D checked. I am still unclear why it has been so wonky since before diagnosis, but it has been quite tough to get it stabilized. (At one point I was on 150,000 IU’s of Vitamin D a week! #TrueStory.) Before I knew about brain tumors or rare genetic disorders, I remember that my Vitamin D level was 28. I have been forced to learn a whole lotta stuff these last few years I know it’s better to have a higher level (but my current endocrinologist doesn’t want the level TOO high because then I am at risk for kidney stones, or something.) Anyway, it’s been a very fine line getting this Vitamin D level worked out.
About a month ago, thankfully one of my doctors checked my level and it was 34. Before this test, I remember it was almost 50. Why the change? What the heck is going on? Thankfully I got ahold of the endocrinologist and he told me to take 50,000 IU once a week and then get my blood checked a month later (which was this week).
I went to the laboratory this morning and joked with the front desk woman that I “only had 1 lab this morning”. She said, “Oh yeah, I know, huh.” (NOTE: The hospital staff in Radiology and Laboratory know me by first name.) I told her which lab I was having done this morning (VITAMIN FREAKING D!) and which doctor. I thought she was clear. I was clear. Come to find out she was clear as mud.
When I went back with the phlebotomist she took 5 vials from the drawer. I thought it was rather odd to have so many, and mentioned it to her kind of matter-of-fact. She then mentioned, “Cortisol (something)”, and I told her:
Me: We aren’t doing those labs today.
P: Oh, you’re not doing labs for Dr. B?
Me: NO. I TOLD the woman up front that the labs were for Dr. S and ONLY Vitamin D.
P: Hmmm. OK, right? OK, we’ll cancel.
Me: I EVEN joked with her that I only had 1 lab today!
So the point to my story is this: People make mistakes, people are human. I get that. But I never knew how much I had to be on top of my game before this life with 2 Rare Diseases. Before, I would have just let her take those 5 vials of blood and never would have been the wiser, never asked a further question about it.
Now? I am all about asking all the questions I want and need to. And, everyone else better just deal with it.