Tuesday, August 18, 2015

But you don't look sick...

... which is the 5-word summary of life with Autoimmune Disease.  No, fuck that.  AI doesn't deserve capitalization.  It's not fair.  I have been feeling symptoms since late Spring, and I'm finally starting to crack, mentally and physically.  Not a flare, just a slow burn of symptoms that have ground me to a halt.  Not a literal halt, work is fine and activities of daily living are intact.  Symptoms started in late spring when I got injured (again) with IT band syndrome.  I started getting Reynaud's hands in May (May?!).  All of my hair fell out, and even small peach fuzz on my face.  I have a lump in my throat that is noticeable when I swallow and talk (I don't know if that's thyroid or just some esophagus swelling).  I have dry nose and a weird rash around the edges, and my lips are dry scales. My back tingles often.  And all of that is livable.  (Except the IT bands.)

This picture is dated May 1 on my phone.  May!  

But the mental effects are something like this:  

1) I am not myself.  I don't feel sick, but I also feel a distinct departure from my well and true self.  AI is as much of a robbing of your identity as it is a disease.  
2) With that, I transition to the sideline, the bench, of life.  I have 2 parallel lives... the one that I should be living, that I would be living.  And then the actual present.  The one where I lay low, put things on hold, and wait for time to pass. 
3) Not wanting to be around others is a hard thing to explain, but it's a palpable symptom.  I don't know what it is, I just don't want to engage. It just isn't me out there.  I can't explain it. 
3) My own head is a chasm of emotion, self-pity, fear, and desperation.  It's too big in there, too deep. I am completely self-obsessed.  It's hard to think about anything else.  
4) I'm not fatigued, like tired or sleepy. But there is a kind of fatigue present.  Fatigued of AI, I guess. 

I have to give up my spot as a pacer for the Memphis marathon soon.  I haven't done it yet, I was trying to delay as long as possible with the hope that I might bounce from this in time.  I'm trying to reconcile from being heartbroken over it, and then getting a grip on myself and putting it into proper perspective. 


  1. I was diagnosed with PM in August of last year. Hit me like a ton of bricks over the course of 4 weeks, and my CPK got to 15,000 and I was hospitalized for 5 weeks. After a rough winter, and horrible relapse--I am finally feeling like me again. Down to 4 mg of methylprednisolone and 50 mg of Imuran. Get monthly treatments of IVIG--which I attribute to my recovery and overall health.
    My local Doctor sent me to Johns Hopkins in April. They are amazing there. They see new cases like ours every day.
    Thank you so much for your blog. When I was in my lowest period this past winter, reading your entries was like a liferaft. You gave me so much hope.
    I wish you well, and hope that you find the treatment that gets you back to being you. I get it. We just want to live and move like everyone else.
    Thank you again for sharing your story.
    Lisa M.

  2. Aaaack! Thanks, Lisa. So far my treatments have been fairly simple. No IVIG yet, nothing beyond MTX and Arava. But I wonder when those will become ineffective. I hope I'm not starting up an additional connective-tissue-type of AI disease. Symptoms seem that way right now...

    1. K, thinking of you, and went to your blog to see if you had updated...
      I hope the silence means that you are feeling well and strong.
      Happy Thanksgiving!