Wednesday, April 29, 2009

Blue's Clues

I need to find some way to deal with the pain.

Last night I had another weird dream. I woke up with a horrible ache in my neck and shoulder; I think I pulled a muscle or two. Spasming, twitching, and a brief Charlie Horse I think at one point. After an hour or so, I had the strength and presence of mind to reach for my cell phone and call for a family member to bring me some ice packs.

The muscle aches and sudden contractions have been dreadfully painful today -- spreading to my mid-back and upper arm. Constant icing, Tiger Balm, Ibuprofen, resting. Ugh. I didn't take a shower today because my upper body is in so much pain. Standing up for a few minutes is difficult, but lifting my arms above my shoulders would be near-impossible. Some people describe this pain as "coat-hanger pain" - pain in the upper back, shoulders, and neck.

Time for another Symptom Clarification! [Pretend it's a game show.]

Palpitations - abnormal awareness of the beating of the heart (Wikipedia, 2009).

When I say I'm having heart palpitations, they generally
  • are painful, pounding
  • are "loud" or in my ears
  • feel faster than normal
  • sometimes occur in strange places, e.g., temples, neck, ankles, behind my knees, etc.
  • frequently occur along with headaches, chest pain, and joint pain.
Saw a friend today briefly. Fun to catch up, but visits are complicated. She is very empathetic, but again, no one is really going to understand the whole story. And I know it's not good to take things so personally, although given the unique circumstances, you'd see it's hard not to.

Comments like "So have you finished your book yet? Now that you've got time to write a book!" are not unfamiliar. They have tons of love behind them, and are meant to compliment my writing (I think). But at that moment I'm in so much pain, and I'm short of breath, and my thinking is foggy...I'm not doing well.

What are you kidding me? Time? Does everyone think I'm just having fun, sitting on an unspecified amount of free time here?
I'm not sure if they understand. If this is an "opportunity," it's a twisted one at that. Distraction and escapism have become close friends.

I'm still trying to find a way to explain everything to my friends. "Constant pain, chronic fatigue, and we know almost nothing about it"-- I'm not sure if that says enough about POTS. Sheesh. A prize to anyone who can explain it in 3 sentences or less. (And for you grammar-lovers: No Semi-colons! An independent clause is an independent clause. Period!)

Oh, I just crack myself up sometimes. :P

Anyway, enjoy this video. Danny Gokey + Blues = Exceptional!

I dig the 15-piece jazz band,


  1. Glad you got to see a friend, even if it was complicated. Generally, I think it's better to find someone to talk to than to isolate yourself.

    "no one is really going to understand the whole story."
    Yeah, I'm sorry about that. I really am.

    "Does everyone think I'm just having fun, sitting on an unspecified amount of free time here?"
    I certainly don't think that way (or if I do, please tell me and I'll stop). I do hate it when people assume that sickness means more free time. All too often, people just don't understand.

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  3. didn't tell us about the werid dream?

    I'm thinking of you and praying for you!


  4. How's this for 3 sentances:
    I don't look sick, but inside I am a mess. Not a day goes by without me feeling ripped apart inside. Think of the symptoms you had when you were the sickest you've been, and then multiply them by 10 to begin to understand how I feel each day.
    Does that work? None of us can begin to understand. All we can do is listen to what you tell us. And Emma, you do a great job of trying to explain it to us. Thank you. Love ya!

  5. POTS in four brief haiku
    (from the outsider's view):

    * * *

    O clueless medics,
    Standing should not hurt this much
    Poor unhappy stomache

    Heavy mind-fog comes
    Have you seen the salt shaker?
    Sleep eludes all night

    No part does not ache
    I just want to be normal again
    Wait how much longer?!

    Blood avalanches
    This is war with gravity
    Patience is _no_ cure

    * * *

    Rhymed couplets open and close
    (Vonnegut: "So it goes.")