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"Selfish, Egotistal" See how this can help you be a powerful advocate for your own medical needs.
Elizabeth_WebMD_Staff posted:
"I'll Be Balk Or Fat But Not Both"

This statement given by cancer survivor Jennifer Goodman Linn should resonate through all suffering from a chronic illness or disease.

In her blog, she says "I was determined to take control of my treatment and set parameters and boundaries when it came to my disease. Just because I had "cancer" did not mean that I had to forgo things that appealed to me."

  • Do you set parameters or think "outside the box" when it comes to your treatment or care?
  • Are you comfortable making special requests?
  • What would you consider the most "selfish, egotistical" request you have made?

hackwriter responded:
A recent hospital stay tested my complete intolerance for discomfort and incompetence. I insisted that the IV monitor that beeped incessantly and deprived me of sleep be turned off or else I'd throw it out the window.

Though I was not in the hospital for an MS-related reason, my disability discomfort was not at all accommodated. I was NPO for 48 hours yet the surgeon refused to do surgery and refused to discharge me. I broke NPO by sipping my husband's coffee. I left the hospital against medical advice while my surgeon screamed at me for ruining everything whilst I hobbled out the door. I fired him. My decision was a sound one and I sought care elsewhere.

This kind of thing takes guts--and self-esteem, and ego, and outrage, and experience. After 12 years with MS and lots of health care, I've learned to aggressively stand up for myself and tolerate nothing that smacks of neglect.

Next I may lobby for free lipo and tummy tucks after rounds of steroids. I'll let you know how that turns out.

Elizabeth_WebMD_Staff replied to hackwriter's response:
I am sure many of our members would like to lobby for the lipo and tummy tucks! I am we could construct a "medically necessary" response to any requests for insurance authorization. Ha!

I am sorry about your hospital experience, I can't imagine how frustrating that was. Glad you felt confident enough to advocate for yourself, so many patients do not. Was the beep turned off easily at your request?

When I worked in private practice a prominent member of our town was scheduled for surgery. She wore a wig and was adamant about not removing it. I discussed it with the OR staff and after much discussion, it was agreed that her wig would be removed and the surgical cap would be placed by our surgical assistant with no one else in the room.

After surgery, again with no one else in the room, her wig was placed back on, adjusted just right by our surgical assistant and she was taken to recovery.

Our patient only agreed to this after meeting with our surgical assistant and feeling comfortable the assistant was empathetic to her concerns.

Any one else have requests or stories that could help others?
lovesweinerdogs responded:
Wow, what timing! We were talking about this today! I'm considering filing for disability and was discussing it with a co-worker who is also very mobility impaired.

I have felt awful about "causing a ruckus" at my workplace. They have required me to move back to my old job (which I cannot handle physically and struggled for 2 years to transfer out of) or go home.

I'm really feeling guilty about insisting on my rights under the ADA-I'm perfectly capable of performing the duties of my current position. Make a special request? I'm not sure I could. Tell me more about how to do this...

Much love,


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