November 21st, 2011, 02:29 PM
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Platinum Supermommy
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Join Date: Feb 2005
Location: Offutt AFB, NE
Posts: 19,800
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This totally made my day so I had to share. I hate the fact that I have to take narcotics to function. I've fought hard to be on a low low dosage of them, and recently we had to up my dosage because I was in too much pain to do much good. Chris begged the doctor to up my dosage behind my back and the two of them sat me down and had a heart to heart about it. The new dosage works amazing, and while I'm still in a lot of pain it is back to being bearable. I went from 2 mg of dilaudid 6 times a day, to 4 mgs of dilaudid 4 times a day. For the average person that is a LOT of pain meds.
Today at my pain clinic appt the doctor was talking to me about my upped dosage. It's a medical school, and since EDS is so rare there are always loads of students in my appts with me. I told him that the dosage was working amazing, but I still felt bad about upping it. He told me I was one of his "star patients" because it's nearly unheard of to be on such a low dosage and to only be one one pain medication. Most EDSers take 3 or 4 different kinds and much higher dosages. He said it was amazing that my body is building up a tolerance so slowly and then he started talking to his students about how rare this was and how amazing I am. It totally made my day!
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