The Glass Ball

It’s been a little while since I posted. As my last post alluded to, life certainly doesn’t stop. It caught up with me for a few weeks and left me incredibly busy. I am applying to PhD programs, working, doing research, and went to visit my mom for a little to help her with some things around the house. So with all that, I put my health on the back-burner. Plus I needed a break. I’m lucky in that I can escape from the realities of my conditions for a little while. This doesn’t mean that I can act fully normal. I still get tired and still have pain and I know that pretending to ignore it will catch up with me.

My mom compares life to juggling. She says that the health ball is made of glass. Once you let it drop, it breaks and you’re done. No more juggling. I think my little hiatuses from my health are like tossing that glass ball really really high. I can ignore it for a while. But once it starts to come back down I have to scramble to catch it and return to my normal juggling.

So I just caught my ball. It’s pretty and shiny and I’m trying to get back into the swing of things with that stupid ball. I gave bloodwork today, and as usual, it was off just a little. I have low osmolality. I have no idea what that means, but I hope we can just ignore it (maybe I’m not ready to start juggling again). I really don’t want to have to do more tests. I also recently called my geneticist to learn about the results of that bloodwork. My acylcarnitine profile, urine organic acids, and very long chain fatty acids were abnormal. I have absolutely NO idea what that means either. I don’t even know how or what was abnormal about them. So I asked what the next step was going to be. Apparently I’m either going to get genetic testing to explore the different types of EDS or an aneurysm genetic work up. I think they might do both though. I was also told that mitochondrial diseases are still on the table due to abnormal tests. I may have to repeat those tests. Overall EDS and mitochondrial disease seems to be the two diagnoses that I’m looking at at the moment. Hopefully I’ll find out more at my my appointment next week.

After the genetics appointment, I have appointments scheduled with a neurologist, gastroenterologist, ophthalmologist, nephrologist, and my general practitioner. I may find a new cardiologist. I better learn how to juggle again.


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