Well, nothing too exciting to report at the end of my 4th moth post CK! I am feeling well, and have not had to roll back any of my activities, work, or life.
Certainly I have days in which I get a bit emotional and edgy in response to the symptoms I’ve always had - whether they worsen or fluctuate or not. For the most part, the symptoms are not new - nor are the caused by the CK. They are just there - a constant reminder of my little hijacker.
The only new-after-CK issue I have had has been some twitching under the eye and on the eyelid. Neither are both at once, and neither are all the time. Also, neither are painful. More of a nuisance and just another reminder of the AN. Occasionally I’ll get a sensation of twitching in my chin or eyebrow - neither can be seen when I look in the mirror. If you have long hair, you’ll know what I mean when I say it’s as if a strand needs to be wiped away from that spot - but it’s not there.
So far, I haven’t had a full-on facial spasm - for that I am grateful.
As a precaution, I contacted Stanford about the twitching. The nurse with whom I spoke told me what I already suspected - that it was likely the nerve being irritated by the AN or the treatment. She said if I wanted, they would prescribe steroids. I asked if it would be unwise to simply ride it out, as I planned. I was told that doing so would be fine. Not taking medication is my preference - unless necessary. At this point, the twitches don’t happen every day or all day. They are merely annoying. I choose to assume they are going to stay that way and eventually go away. I also choose to assume that this is just the CK doing its work, and that it is a good thing.
Which brings me to my most salient point. Up till now, I have been fortunate to not encounter any real physically debilitating issues that I know many AN patients have. For that I am grateful, and realize that I am lucky. Thus far, it’s the mental/emotional aspect of this journey that has made it a real test of my grit. Grit I’d quickly run out of if it weren’t for my family, friends, dogs and horses (seriously) cheering me on.
So if you are reading this, wondering if post-CK life will be wretched….I can only tell you that at the close of my 4th month post treatment it’s been no worse than it was before CK - physically. Mentally and emotionally, it’s worlds better than what I (and everyone else with an AN) experienced at diagnosis. Which, as far as I am concerned, is just fine. Of course everyone does not have that experience, and things may change, but so far, so good
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Hopefully the next time you are subjected to my pseudo-diary will be this time next month!
PS - I forgot to mention my hearing. It seems *about* the same as when diagnosed. It was a mild hearing loss then, and probably still is now. Maybe a touch more loss. But I can understand people when they speak from the AN side (as long as there is not a ton of ambient noise), as well as hear the music coming from my headphones at the gym. Not perfectly, mind you, but hey - I'll take it
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