The downside of growing up with bleeding episodes is that it becomes your “normal” and you no longer distinguish what is suppose to be the “real” normal. I guess that is true with Star, as with many others like her.
I have been like that too, believing that “normal” varies from person to person. My “normal” is having very heavy menses on the first three days that at times, I cannot go out of the house for fear of “flooding” the streets. Of course, that’s an exaggeration. But it’s too heavy that it’s too risky to go out.
Star and I always “quarrel” about keeping track of her menses. I insist that she crosses out the calendar the day it starts. This will make it easier for me to monitor her. As our rule of thumb, we’re suppose to infuse clotting factors after a week of heavy menses and take tranexamic acid to regulate her bleed. But she almost always forgets.
Since she started her periods, hospital confinements due to bleeds have become part of our lifestyle. Every now and then, Star needs to be either infused with factors concentrates or transfused with different blood products, depending on her condition.
This morning, she passed out while going out of our room. I thought she slipped but when she didn’t open her eyes, I knew something was wrong. I shook her and when she finally opened her eyes, she was lethargic for a moment. I immediately called her hematologist who advised us to have Star confined.
When I “interrogated” Star, I learned that today is her 16th day of menses. Because she is already so used to prolonged menses, it no longer bothers her.
On a positive note, Star is taking things well. She is a strong girl, passionate with the things that she likes and I can say, very well adjusted. She never lets her bleeding disorder get in the way.
I’m sure Star and I will soon reach an amicable solution to monitoring her menses and minimizing instances like now when her hemoglobin drops to a dangerous level. For now, we just have to settle to our “normal” and hope that soon, our “normal” will mean lesser bleeds and lesser hospital confinements. ##