August 14, 2016
Camping this weekend is different. My whole life is different. The Persaid meteor shower was last night and, once the clouds finally dissipated enough for us to see the sky, we tried to watch it. My husband saw one first, and i thought I was seeing many meteors slowing moving across the sky in orbs of light, until I realized that my eyes were just coming unfocused from staring upwards. All I was seeing was the stars distorted because of my blurry vision. I was instantly frustrated and upset. I stood up quickly, announcing that I was going to bed since there was no use even trying. My husband had had a couple of drinks and true to his wonderful self it made him much more understanding and compassionate. In his gentle, slightly drunk voice he coaxed me back into the chair and talked me through where to focus my eyes so that we were both looking at the same section of sky, reminding me that we could experience it together. Ever so gently, like he was trying to get a bird to eat out of his hands, he managed to calm me down and look up into the sky. Neither of us saw any meteors, the meteor shower had peaked the night before anyway, and my vision was just as blurry as before, but it was still beautiful. Truth be told I had my eyes closed for most of it anyway, since it was making me dizzy and tired, but I enjoyed being close to him and doing something special together just the same. It’s just another example of how life has changed, and how grateful I am that he is adapting along with it.
A week ago I dropped a mason jar of jam on my toe, which resulted in an emergency room visit for 8 stitches and IV solu-cortef to ward off an Addison’s crisis. I never even felt the jar hit my foot. I never felt my grip slipping. It was as if my muscles just stopped, like a switch was turned off. I had a few great weeks in early summer, and now I’m back to general weakness. I have the appointment with the new neurologist booked for 17 days from now. It feels like the climax to this saga is coming. We saw the internalist this week, who didn’t feel he could be of much help to me but noted that hypokalemic periodic paralysis sounded like a definite possibility and that I should pursue it. I’ve looked a little into what treatment is, but still don’t quite understand it. Unfortunately it seems like it all boils down to potassium and sodium channels in the body, which is the minerals that Addison’s disease messes up. It’s been the first time that I’ve really had the “why me?” Mentality. The incidence of both Addison’s disease and hypokalemic periodic paralysis is 1 in 100,000, with very few documented cases of overlapping diseases. I don’t even know how to do the math to figure out the actual odds. It just doesn’t seem fair.I bought myself consolation mocassins after I got the stitches. They were used so I only paid $20, which is important now since I don’t know what the future will bring in terms of financial stability. I’ve always wanted mocassins, and with the difficulty lifting my feet when I walk they are making life so much easier. Right now I’m laying in a hammock looking up at the boreal forest with the sun shining down on the lake beside me. It’s warm out but I’m cold despite all my layers of fleece. My fingers work well but my arms are stuck to the side of my body. My mocassins are on the wrong feet but it seems like too much effort to untie them to switch them. My boys are on a hike, and I’m to pick them up in 22min.
Camping is different. Life in general is different, and I seem to be slowly accepting the fact that it might always be different. For so long all I’ve wanted is a correct diagnosis, I never considered the emotions and adaptations that would come along with it. It’s almost as if I’ll have to start the grieving process all over again, but this time without all the hope and clear expectations.
I’m going to put my moccasins on the right feet to start.