Still Here. 

Life has been better lately – health wise. After my neuro switched my IVs to two liters of Lactated Ringer’s solution every week, I’ve noticed a huge difference. My blood pressure is more stable, my potassium and calcium don’t drop to “critical” levels and cause arrhythmias. I haven’t been in the ER, aside from one scary unresponsive episode with lights and sirens…🙄 My nurse was fortunately here for that – but that was before starting the LRs. I have more energy. The heat here is awful but hasn’t affected me as much as last year, pre infusions, when I was mostly bed-bound. I have more good days than bad days, it’s amazing. Sometimes I forget I’m a “sick person” and stress seems to be the only thing sending me into a downward spiral at times. I’ve been better at managing that lately and trying to figure out my personal life – or live in denial. Either way. 

My neuro suggested a chest port for my fluids. It would make it possible for me to access the port myself and stay accessed for longer than the IV. Travel would be easier. Most port experiences seem to be positive but I get hung up on the negative. I’m still considering it though. I’m also at a point where my doctor thinks I’m ready to try physical therapy – the POTS protocol that is pretty controversial among patients. I’m willing to try it, I just have no motivation with this heat and finding childcare is always… Meh. 

I don’t think I ever updated about my geneticist follow-up. My testing for vascular CTDs came back negative. While I feel like I fit the hypermobility EDS diagnosis much more, my geneticist said the severity of my other conditions lead her to give me the classical EDS diagnosis. Fifty percent test positive for this gene and she is convinced I’m part of the 50% that does not. Either way, I’m just relieved to have the EDS diagnosis in my file so that my other physicians will follow precautions for that. 

My hematologist isn’t incredibly impressed with my blood work but not concerned enough to do a bone marrow biopsy at this point. If my hemaglobin drops more in 3 months, he will suck out some marrow 😬 but for now it’s “anemia of chronic disease.”

I’ve put on ten pounds in the past couple of months. Ten more and I’m back at my “normal” weight. Yay.

Not much else… Most days are pretty good. Some days I feel hopeless and alone but I’m doing the best I have since getting sick and I’ll absolutely take that. Semi-positive post, whaaaat?


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