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Thread: My mom

  1. #11
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    I think music is part of what keeps me going and helps me make sense out of life. And singing always brings back happy memories of my mom - I learned a lot of songs from here, and she gave me my first piano and guitar lessons.

  2. #12
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    It must be so hard for you to deal with visiting a loved one when they not only are experiencing physicial symptoms, but also seem to "be away" at times. I have been spared this pain and loss, although I can imagine that you are grieving for the mother that was. Years ago, I went through a bad Lupus relapse right before Christmas. My three children were very young so I went to my friend's home so that the children would not be affected by my illness, (although I think they were more worried not having me there). I was very weak and the pain was extreme. I was not on any medication other than ibuprofin. I couldn't sleep, eat, etc. During most of this time, I was definitely in another place. The "fog" that goes along with SLE, fever, weakness made it easier to go into a sort of meditative status. I think this is common for a lot of people who are going through some sort of trauma, whether it is physical, emotional, mental or spiritual in nature. To help ease your mind, I have always thought it was harder to watch someone else in pain than to experience it myself. It was difficult for me to watch the frustration of my family and friends when they were not able to effectively help me. The spirit and mind take over when the body is in crisis, allowing us some respite from our misery, and most likely, your Mother is finding relief from her symptoms in just such a way. While you are going through such a hard time right now, please be kind to yourself: ask for and accept help from every person you meet, take some time to pamper yourself, eat healthy, exercise and get enough rest. If you get run down, you can't give your best to those you love.

    I am thinking of you, and pray that you continue to find the strength to be strong

  3. #13
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    Thank you all of the kind words and insightful replies. I appreciate you all sharing with me. It helps me to feel not so alone.

    I agree with the care being better when the family is involved. I'm a pain in the butt if needed and I go to see her every Tuesday, Thursday, Saturday and Sunday. More days if she needs anything...and all she has to do is call and I make things happen if she needs it.

    I do wish I had someone to share this with - like a sister or brother. I also work full time and between my job, my home, my husband, my mom, and my dogs, I have very little time for myself. I took some today though!!! hee hee hee...my husband had to work and I did NOTHING all day. I watched TNT all day and surfed the internet. I didn't do an darn thing and I finally took a shower about 3:00 this afternoon.

    It was nice.

    *hugs* to you all. I'm so glad I found this place!

  4. #14
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    Kokopelli, good for you!! A little rest never hurt anyone. I do not see how you work full time and do all that you do! :lilangel:

    Take care!
    Grace
    In your lifetime, you will find that you have true friends, and those who are friendly. It is important to recognize the difference.

  5. #15
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    "Aurora"

    Dodging the white coats and white halls,
    I check my guitar, is it in tune?
    Crossing the hall to her room
    Where
    Sitting alone in her chair
    I
    Position myself in her singular stare.
    I sing for Aurora.
    She's not feeling too well today, they say,
    "How can they tell? She looks so
    Healthy in
    Every way?"

    And, she
    Can't speak a word but I know
    She can hear every word that I say!
    I
    Wish I could speak with my eyes!

    Jerking her toes in time:
    A cryptic rhythm of hers--or mine?
    Sometimes out of the shadows she
    She whispers her scattored history
    A faint remembrance visits the house
    Of the elderly.

    And, she
    Can't speak a word but I know
    She can hear every word that I say!
    I
    Wish I could speak with my eyes!

    2056
    Here I sit
    No more numbered days,
    And I wake to a circle of angels
    With their heads down low,
    And their mouths,
    encircle my soul.

    Am I here
    In this numbered room?
    I awake to a blue-jeaned girl
    She's singing her songs and
    Trying so hard not to
    Cry.

    And, she
    Can't speak a word but I know
    She can hear every word that I say!
    I
    Wish I could speak with my eyes!

  6. #16
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    That is really neat. Thank you for sharing it.

  7. #17
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    First of all I am really sorry about your mom....my mom too was also diagnosed with SLE...she is 36 and i am 17.......like you it didn't seem to bad at first but it has been getting worse lately....since i was a little girl i have always had to care for her and to see her first hand get weaker and weaker hurts alot.....what is scary the most is we don't get much help from anyone and we don't know much about it because her doctors don't have much information on it......i wish i knew what i could do to help her.....it's just extremely hard with a house of 7 and me being the oldest.....i know somewhat of what your going through and i'm here to talk if you need to......and i could use some advice too

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