Already in the After

“Every patient’s story starts the same way…it starts with them being fine.  It starts in the before.  They cling to this moment, this memory of being fine, this before…as though talking about it might somehow bring it back.  But what they don’t realize is that the fact that they’re talking about it to us, their doctors…means there’s no going back.  By the time they see us…they’re already in the after.”

– Meredith Grey, Grey’s Anatomy, Season 5, Episode 15

I remember telling my husband – crying to him, if truth be told – after my 3rd urgent care visit in 2 weeks and the 2nd one for shortness of breath that I kept waiting for the doctors to tell me everything was going to be ok and that I’m fine, but no one was telling me that…I was already in the After.  Only a week before that I was told that I probably had a virus that was mimicking an autoimmune disease and it would probably clear on its on in 6-8 weeks, even then…I was already in the After.  And during my first urgent care visit, where I was told that my chest x-ray was clear [spoiler alert, it was not clear!] and given nothing more than a script for an inhaler…I was already in the After.  And prior to the shortness of breath and urgent care visits, when I self-diagnosed my joint pain as carpel tunnel caused by 5 1/2 years of small child rearing and called the local ortho clinic to make a new patient appointment in hopes for a cortisone injections…I was already in the After.

Then my memory gets fuzzy.  I can’t tell what was really Before and what was After.  Was really any and all joint pain due to disease or could it have previously been a simple case of carpal tunnel.  In MD, if I found myself out of breath going up the stairs – was it the disease or simply being out of shape.  The only real divider I can find is one liver lab result from June of last year.  It was normal.  In October, it was abnormal.  With treatment, it is now normal again.  My liver lab is not an indication of the health of my liver, but instead it is an indication of my body attacking my muscles.  In June of last year, it was not being attacked.  In October, it was.  But even that doesn’t necessarily speak to my lungs or my hands or any other labs that indicate muscles being attacked, but it is the closest thing I have to a Before and After.

It is difficult to wrap one’s head around the fact that one day in June a lab was normal and one day in October it was not.  Or very simply, one day I could use a pepper mill and the next I couldn’t.  Or worse – that one day I could breath and the next day I struggled to do the most basic function.  I think this is the same for any type of life changing event – in particular the bad kinds of events.  It isn’t unique to my situation at all.  However, I’m not sure if I’m meant to wrap my head around it – or if throughout time I will continue to periodically look around at my situation and think WTF happened!?!?!

3 thoughts on “Already in the After

  1. You really have described many of us. You are doing a great job even though you think at times you are not. I am one proud aunt. You make me that way.


  2. Hello … I discovered your blog a little while ago and just figured out how to leave a comment. I am also an ASS patient – maybe even with the same autoantibody (PL-7). I live in Vermont and was diagnosed last Feb., although my symptoms began in late summer 2014. I would love to connect with you via email, share treatments, etc… Your posts are great, by the way. I have a 13 and an 11 year old and not being able to be active with them has been very hard. So, I can relate. Hope to hear from you!


    1. I’m so happy you’ve enjoyed the blog. I will reach out to you via email. I’m part of a very active facebook group of more than 200 members with ASS. The person that started it also recently launched an ASS website. I’ll be in touch soon!


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