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Before I was diagnosed with sarcoidosis, I had never been seriously ill. When I was a kid, I did have some kind of repair surgery on my kidney. Since then, though, the only problem I had was undiagnosed high blood pressure. Being young and always under 115 pounds, I didn't think I could have HBP. That, folks, is one of the reasons it's called a silent killer.
Anyway. Once I started having my blood pressure treated, I had no more serious issues. Good thing, since I have always had a fear of doctors.
When I began treatment for sarcoidosis, I trusted all my doctors, nurses, and other medical caregivers completely. To be fair, at the time, I had some of the best doctors one could ask for. However...
Recently, when I was reevaluating my eating habits (I've put on weight from being laid up with that "flu-monia" I blogged about), I realized something. I should not be taking the vitamin D pills that I have.
There are a couple of things that I've had hammered into my head about my health (as regards sarcoidosis and CKD). One is to watch my intake of sodium. phosphorous, and potassium. The other is to watch my calcium intake.
Well, for the longest time (at least 3 years), I have been taking a daily vitamin D tablet - 250mcg (10,000IU). I have always had this on the list of medications that I present every time I go to a doctor's appointment. Why has no one on my care team ever sounded the alarm on this?
Of course, I immediately stopped taking the vitamin. Also, I am going to be asking my care team about this whole thing.
I really, really count on my doctors a lot - or, at least, I did. For one thing, I have some sometimes serious cognitive issues. I have trouble remembering things and there are times when I really have trouble with comprehension. For instance, just to maintain my blogs, I have to keep notebooks of information and I have to edit and re-edit posts on Word docs before I actually send a post "live". The same thing goes for anything that requires near-complex thinking.
This situation makes me question whether I can count on my care team to really have my back. I am not questioning their character or kindness. My thinking is that they are overwhelmed with patients and sometimes things slip through the cracks.
My confidence is shook. I already keep a notebook to remind me about things to do with my overall health. I'm starting another one to document every single thing I do as far as food and medicine and how I feel from day to day. I need to keep track since I can't count on anyone else to do so.
I'm going to pass along something a social worker said to me when I was being released from the hospital after being diagnosed: "Be your own advocate". At the time, I lived with family and they did that. Now, it's up to me again.
Peace
--Free
