Warehoused

[I wrote this on Wednesday and fortunately paused for a moment to think I should give a warning to at least my parents and boyfriend before posting it. I want to share how my life is influenced by lupus, but I also would like to refrain from simultaneously scaring inner circle people and insulting them by not communicating directly. This whole communicating about this facet of my life thing is new, and I've found that, in general, the ease with which I can speak openly about lupus is inversely related to how well I know the listener and how much I think they care.]

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I was going to follow up the previous post with one called "No More Stairs." My knees hurt after that run early in the week. I worried that I might be running too much, too fast. The problem with that theory is that it's not so much yet, really. Maybe I was just one of those people who can't run. I've spent the last couple days getting increasingly nervous that runner's knee was going to keep me from serious training, much less the marathon. I was worried that I wouldn't get to keep running as an integral part of my days, be able to start training with the team, would have to find a way to gracefully exit both the marathon and the blog, and would have to hold myself back from over-explaining how I really did try my best and did not quit quit, and how that not quitting quitting had nothing to do with lupus. (See, look at me! Lupus doesn't have to get in your way!)

 

Nerves turned into just-repressed panic last night when I felt pain on the balls of my feet and right where my fingers attach to my hands. The very early start of a lupus flare. I've had this before, once when I tried to wean myself off the medication that keeps my immune system at normal levels (as everyone with half a brain who is not an angry teenager knows, don't do this except under doctor's supervision). At that time, I was convinced it was the beginning of the rest of my life lived in a flare. It wasn't. I went back to taking a normal dose and was good as appropriately medicated new.

 

This time, I'm 90% sure I know the cause. I believe it's a reaction to a pretty non-serious medication that I haven't been on long and don't need to be taking. I should be able to discontinue it (after talking to my doc) starting tomorrow, and, (purely) intellectually, I believe I'll go back to my normal. But I have felt my heart in my chest all day and my skin feels hot from the stress.

 

Once tomorrow morning rolls around and I actively skip that pill, I know I'll feel more in control of the situation. I hope and think I should feel normal in a couple days and plan to run and play in the sunshine over the long weekend.

 

Yet another reason why raising awareness and research dollars is so important-- With more research, doctors will know more about what causes and influences lupus, and treat patients in a way that minimizes the risk of these complications.

 

For now, cross your fingers. I need to work and pretend this hasn't scared the shit out of me.

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* Update: I stopped the suspect medication. Snotty face and tears, head resting in a lap, and half a bag of chocolate chips at midnight later, I'm doing okay. Hands feel much better and the feet are almost there. Hope to report normalcy in the next day or so.