I know, confusing title. But hey, living with a rare disease is confusing, so it fits!
Having a rare disease or any chronic illness means that life is lived in a weird place between so-sick-I-need-the-hospital and let's-just-ignore-the-pain-and-have-fun. Even when I am going out and doing things, I still have symptoms...I've just learned how to live with them. I have a "new normal" where what used to be considered symptoms are now just my baseline.
It's like that story about a frog that is put in a pot on the stove. If the water is already boiling, the frog will freak out and do everything it can to escape. That is an acute illness. All of a sudden you're thrust into a boiling pot of symptoms and something has to be done to get out.
If you take that same frog and put it in the pot before boiling and slowly increase the heat, the frog will learn to adjust to its surroundings and not jump out. This is chronic illness. We're placed in this pot of increasing symptoms and while it is uncomfortable at times, after dealing with it for some amount of time, we eventually learn how to manage. (Side note: no idea if this would actually happen if you tried it with a real frog, but for the sake of this example, we'll go with it =P)
But what happens when these intersect?
Two weeks ago, I had an explosion of severe pain in my right lower abdomen. A non-chronically ill person would probably immediately head to the ER suspecting appendicitis. But it's a bit more complicated for me...we know I deal with stomach pain, slow motility, nausea, vomiting, etc. on a regular basis...at what point do my symptoms move from "Kylene normal" to actually concerning? We struggle with this often. I get weird symptoms and my body does wacky things. Many times we just attribute it to my mast cell disease and move on. But what if that means we are missing something else that could be serious.
What if the fact that I am chronically sick is making us miss an actual "normal person" sickness. There's a fine line there. We don't want to have to check out every new symptom as though it is unrelated because the reality is that 9 times out of 10, it IS a product of my mast cell disease. But there is still that 1 time where I might actually have something unrelated. When my chronic illness becomes an acute sickness, things get more complicated than they already are.
Just in case you were wondering (or worried =P) turns out the pain fell into that 9 times out of 10. We are very thankful that it did not turn out to be anything more serious and we were able to come home that night. Actually, it was probably one of the most efficient ER visits we've ever had, in and out in just over 2 hours!
Overall it was still a pretty good day, too! Oh the irony of having sudden onset severe pain, taking an ambulance ride to the ER, spending 2 hours being poked with needles, getting meds that make me super loopy, and having to get a CT scan, still having no explanation for the pain explosion, and coming home before midnight and STILL being able to say it was a good day. Guess it was because I wasn't ACTUALLY sick that night =P Chronic illness is a complicated mess sometimes...