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I would like to share something that I wish I had known. We are often advised to keep good notes, and that is something I have done. I have pages and pages of my notes, plus copies of labs and xray results, correspondence….you name it, I have it.
A lot of it.
More than eight years worth. Some of it was condensed to one calendar page per month, but 12 x 8 is still 96 pages of information that no one has the time to go over.
I made a spreadsheet that lists every medical appointment from the start in chronological order. I can find the preceding symptoms in my notes, if necessary. I used these headings: Year, Month, Day, Event (the reason for the appt. – well, MRI, ear infection, etc.), Doctor, Medications (everyone’s needs for this would vary, but what helped me most was to keep a separate column for acute treatments), Supplements, and Notes (if something needed further explanation).
That is what I did, but of course another method might work better for you. I now have each year on a page.
I’m sharing this because I wish I had done this all along. I would still keep my personal notes in the same manner, but I wish I had “just the facts” going in one place all this time. It was extremely hard to relive everything as I entered the information. It has taken a toll on me these past few days, and maybe by sharing this, it will spare someone else the bad experience. My daughter ran another 5k with her running club, and came in ahead of the rest of them. This normally would have me feeling so good – another ‘milestone’, not just running the 5k but also outperforming some of her healthy peers! Instead I’m really depressed by what we have had to go through getting to this point.
And when you put it all in eight pages, the facts speak for themselves.
Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.
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