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Thread: Wegie talent outlet

  1. #91
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    Cool! And there are some magnets there, too, though not as nice looking as clay ones would be. However, I don't really have time to make them, anyway. I do like the idea of the spoon shape in jewelry or other decorative arts, including ceramics.
    Anne, dx'ed April 2011

  2. #92
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    Quote Originally Posted by annekat View Post
    Cool! And there are some magnets there, too, though not as nice looking as clay ones would be. However, I don't really have time to make them, anyway. I do like the idea of the spoon shape in jewelry or other decorative arts, including ceramics.
    Maybe you could make a prototype and see if the inventor of the "spoon theory" would be interested in commissioning some.
    Jacquie (aka Lifelong Booknut)

    Updated status: "Honorary Weggie"

  3. #93
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    Quote Originally Posted by BookNut View Post
    I posted this somewhere else a day or two ago - but some of you might not have seen it. It is a tribute to my grandparents who raised me, and I think it will give you a laugh. Enjoy!

    My source for humor. A tribute to my grandparents. « Wanderings?
    Jacquie, I finally got around to reading this and your other blog entry. This made me laugh out loud several times! I'm so sorry you lost your parents and never really knew them, but you were so lucky to have these wonderful people waiting in the wings to raise you up into the sparkling personality that you are today!
    Anne, dx'ed April 2011

  4. #94
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    Quote Originally Posted by BookNut View Post
    Maybe you could make a prototype and see if the inventor of the "spoon theory" would be interested in commissioning some.
    Nice idea. She might like having something handmade on her site. I'll have to put it on the back burner for now, though.... Maybe at a time of year when demands to make what I already make are not so high.... and when I have more spoons!
    Anne, dx'ed April 2011

  5. #95
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    Thanks for you lovely comment about my grandparent post! I have not been feeling very sparkling for the past month or so. Today is better with the big guns of prednisone and Claritromycin kicking in. I am SO hoping to be able to settle in with just Clarithromycin and avoid the constant roller coaster of pred. Fortunately I have been spared the emotional ups and downs of the pred for the most part. But I just don't want to be on it all the time, with my family history of diabetes. And it has been a constant round of on and off and back on again for the past year really. Nice to talk as always!
    Jacquie (aka Lifelong Booknut)

    Updated status: "Honorary Weggie"

  6. #96
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    I wrote this a while back during some very dark days. I needed to express how I feel living with constant pain and exhaustion. I haven't shared it with anyone but it made me feel better just putting the words down. I thought others might be able to relate and/or take comfort in the shared aspects of the experience. Don't worry about me when you read it-- I express the depressing stuff so it doesn't stay in and make me sicker... I'm okay, and like I said it was in the past... But it's a good description of the bad days, thank God for the good ones in between! Writing it was very cathartic at the time.

    This pain
    This body of pain
    Weighs me down
    Fits me like a glove
    I can't take it off
    It's heavy, so heavy
    sharp; tight. a torture-suit of armour


    It is not me
    But it's mine
    Mine alone
    Isolating
    Cheating my children
    Infiltrating my muscles, my joints, my bones
    My teeth
    It saps my energy
    Sets me apart


    The real me
    Before pain
    Without pain
    Sometimes despite pain
    Is light, carefree, spontaneous
    Laughing, wild
    Dancing, talking late into the night, making love
    Not worrying about the price I will pay tomorrow
    Not waking with an instant awareness of what hurts the most
    How will I get moving
    Where's my damn coffee and why do all these people want something from me before I can even move


    Hurts so bad
    With its grip on my head
    Piercing my eyes
    My jaw screaming
    Neck aching
    Hips and back tight and sore
    Please make it stop
    Give me a break


    Let me wake feeling light
    Comfortable, easy
    Excited to start the day
    Focused on something, anything else
    SomeONE else
    My beautiful girl, needing my attention and approval
    Time with her mom
    My sweet boy
    Wants cuddles on the couch
    Reassurance that he is my world


    My lonely, steadfast husband
    Who spent another evening, another night
    Without his wife
    Because if I don't get my rest
    My twelve hours of escape from this pain
    Respite from its constant drag
    On my every move
    On me even in stillness
    I can't get through the day


    Make the breakfasts, pack the lunch, please get dressed please put on your shoes please
    Get in the car
    sweep the floor,
    Go to appointments
    Endless appointments
    Be there with smile and open arms and snacks
    When the bell rings


    Ready for the next shift
    Swim team, showers, home for dinner
    Or play dates, group snack, negotiating who plays what with whom
    Cajoling, bribing to get the shin guards and cleats on and out the door
    Then dinner, baths, stories, cuddles
    I'm on empty
    It is all I can do
    It's most important
    I can't be a good lawyer
    Can't be a good editor
    Can't be a good wife
    Or homemaker
    Maybe I can still, if I use every ounce of resources,
    Be a good mom
    So I don't do anything else


    This pain; this exhausting pain
    This painful exhaustion
    Is mine
    And mine alone
    I can't share it or describe it
    Let it define me
    Make me a complainer, whiner, hypochondriac: 'you look so healthy!'
    So you don't know
    Can't know
    Must think I can't be bothered
    To pick up the phone
    Invite you for dinner
    Come dancing for your birthday
    Run for the cure


    Believe me, I want to
    I wish I could
    On that rare day or night that I can and I do
    I wonder, are you thinking
    She seems fine to me!?
    Where's her pain and fatigue now?
    How convenient


    How can I explain
    Once in a while
    I return to myself
    A blessed break
    It fades into the background
    Allows me to taste, feel, focus on life
    Not hurt, so aware of my body, its aches and tiredness
    That it puts a buffer between me and the world
    For those glorious moments or hours
    I am me again
    Dancing, laughing, running with my kids
    Then the next day
    The price
    So tired
    Hard to walk, hurts again
    How can I explain?
    Easier not to
    Just hope you don't judge
    That you know
    Because it doesn't show doesn't make it less real
    Because I look good doesn't mean that's how I feel
    Either way
    I have to go back to bed
    Think what you will
    Just when the caterpillar thought the world was over, she became a butterfly.
    - English proverb.

  7. #97
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    This beautiful poem is certainly not the first you have written. I hope not the last. Your words put tears in my eyes. I love it! Wish I could "like" it more than once.
    Dale
    Dx Aug, 2009 Remission June 2010 until 8/1/2014

  8. #98
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    Excellent poem, Lisa, really gets the point across. Even I feel like one of those who wouldn't understand, not having your level of pain or all the responsibilities that you do involving other people. So, I'm glad you shared it; it makes me more aware. I'm also glad that writing it unloaded some of the stress. I hope you have more and more of the good days and an easier recovery from the bad ones.
    Anne, dx'ed April 2011

  9. #99
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    wow. Lisa. you just shared your pains it is so beautiful, so deeply touching. feels so close. your voice is my voice. I wrote 2 similar poems, much shorter, in Hebrew. I need to find them, try to translate them and have the courage to share. (mostly becuase of the language). thank you
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  10. #100
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    Thank you for your kind words. Anne, although we all have somewhat different experiences, I feel understood with respect to these issues here, much more so than anywhere else. That's why I'm able to share things I normally don't. It's in the hope that it will help someone else feel seen, heard, understood. I normally don't write poems, this just poured out one really bad morning when I was up too early hurting... Alysia, I'd love to read yours if you want to share. I can read Hebrew but don't understand enough to comprehend poetry.
    Just when the caterpillar thought the world was over, she became a butterfly.
    - English proverb.

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