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  • Her Diamonds

    Maybe most of you are already aware of this, but the song "Her Diamonds" by Rob Thomas was written about his wife who suffers from Lupus. I relate to it a lot...A lot. I cry every time I hear it. I thought I would share it here too in case it might help someone else feel validated too.

    Also the visual representation of the illness (for me the ice represents flares, and the sunrise represents the time when my bladder finally calms down).

    http://www.youtube.com/watch?v=mNCgfrjKcqs
    28 y/o female

    [SIZE="2"]
    Bladder Symptoms:
    Severe urinary urgency/frequency with no bladder pain; severe urethral spasms (3x 'normal' pressure). Symptoms began in 2009.

    Failed medications:
    Ditropan XL (severe retention); Hyoscyamine (made bladder spasms worse); Marshmallow Root; D-mannose; Pristiq; Cymbalta; Lyrica; Nortryptaline; Prelief; Enablex; Baclofen; Ativan; Myrbetriq, Valium Vaginal Suppositories; Amitryptaline; Hydroxyzine

    Failed treatments:
    IC Diet (diet does not trigger or improve symptoms); Hydrodistentions (x2); Bladder instillations (made frequency worse); Heating pad (makes frequency worse); Surgical removal of adhesions on bladder

  • #2
    I love that song, but I never realized that about it. Thanks for sharing that info!!!
    ~Jenny, 26 F
    Diagnosed with;

    Mild IC, November 09
    many many many UTI`s (always e coli so far)
    endometriosis
    ovarian cysts

    Currently taking;

    D-Mannose powder, 1 tsp 2 times daily
    D-Mannose capsules, 4 500mg caps once before bed
    Fish oil
    Vitamin E
    Caprylic acid, 1 600mg cap 2 times daily (yeast control)
    Glucosamine Sulfate (heals your bladder!!!)

    I am currently in total remission!!! :woohoo:


    Past meds;

    Elavil
    Percocet
    Dilaudid
    Elmiron
    Pyridium (never helped at all...)
    Detrol (doesn`t do anything anymore)
    Bactrim (10+ times)
    Keflex (THE most useless antibiotic of all)
    Macrobid (10+ times)
    Levaquin (once)
    Cipro (15+ times)
    Rocephin (IV, shots) (8 times that I can remember.)
    Darpaz

    Procedures;

    Ovarian cyst removal 04`(seemed to start everything)
    Cystoscopy Nov 09` dx`d with IC


    "Well I looked my demons in the eyes,
    laid bare my chest, said "Do your best, destroy me.
    You see, I've been to hell and back so many times,
    I must admit you kind of bore me."
    There's a lot of things that can kill a man,
    there's a lot of ways to die,
    yes and, some already did that walked beside me.
    There's a lot of things I don't understand,
    why so many people lie.
    Its the hurt I hide that fuels the fire inside me.
    Will I always feel this way?
    So empty, so estranged..."
    ~Ray Lamontagne

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