R
Ravyn_Guiliani
Guest
I need your prayers to strengthen my faith in the matter of my health. I have a genetic disease called Porphyria and while I don’t need a doctor to treat it right now, I need other complications treated and my insurance will not cover the medical attention I need. So I am on my own—well you know what I mean–on my own faith. Here is the post I just posted to my health groups to explain the situation further (forgive the cross-posting):
some of you might remember the problems I have had with my PCP the last year. I have not spoken about it much because it is only indirectly Porph related. It is not so much that she doubts the Porph as it is she just does not know anything about it and does not really care to learn. And since I am on Medicaid Virginia Premier insurance she is literally the ONLY doctor within 100 miles who will even see me–so right now I have no choice but to use her.
(some history–this is the doctor who prescribed me metformin for 6 months in various forms when I told her it made me deathly ill–it was as if she was picking names off a list and did not have a clue what they were herself! Everytime she or her nurse called they had the wrong drug–not what I was taking, and once I even got a letter from her telling me my labs were all normal and to keep taking Lipitor—and I had not had any labs done and have never been–nor ever will be!–on Lipitor! She has prescribed 2 meds for hypertension that interact with the 2 meds she has me on for diabetes, and the diabetes meds are supposed to have full liver and kidney workups BEFORE they are prescribed–which she has never done. I got a second opinion last Winter and that doctor felt I didn’t even need to be on anything for diabetes–but he could not see me again because his office quit accepting my insurance. She misdiagnosed an ear infection and gave me an unsafe antibiotic and I ended up in ER. And the latest is that I asked her for a referral to a nutritionist/dietician because I feel the BP and sugar would not be high if I could safely lose weight, and her recommendation? GASTRIC BYPASS! This woman would amputate my finger for a hangnail! )
well today we had a knock-down-drag-out on the phone. I took the 13 RXs she has me on and flushed them all down the toilet except for the Avandia for the high blood sugar and spoke to a Nutritionist on my own who is willing to work with the Porphyria. It is costing me $100 out-of-pocket just for the initial consult–but I think it will be worth it just to have someone cooperate with me. My PCP was not happy. She accused me of not trusting her—to which I laughed (I had just told the Nutritionist that I would not trust that doctor to water my plants when I was gone, let alone treat me for anything! But I didn’t say that to her.) She sounded like she was going to cry. (I must admit–I have never made a doctor cry before! It was disconcerting.) I told her I will continue to take the Avandia and to follow up with her IF she will do the proper testing for liver and kidney and she told me to schedule the appointment. But she also told me–among other things–that if I did not take the meds she prescribed for me to take that I ‘would not last 6 months’! I told her if I did take all her pills I would not last 6 more weeks. I asked her if she realized how many of the meds interact with each other, and her reply to that was that she judged it worth the risk. I told her I didn’t. She told me I was just way beyond the expertise of anyone in that clinic. I promised her that as soon as there was an opening I would find a new doctor and relieve her of the burden.
guess this is the part where my faith is going to make me well huh?
Ravyn
some of you might remember the problems I have had with my PCP the last year. I have not spoken about it much because it is only indirectly Porph related. It is not so much that she doubts the Porph as it is she just does not know anything about it and does not really care to learn. And since I am on Medicaid Virginia Premier insurance she is literally the ONLY doctor within 100 miles who will even see me–so right now I have no choice but to use her.
(some history–this is the doctor who prescribed me metformin for 6 months in various forms when I told her it made me deathly ill–it was as if she was picking names off a list and did not have a clue what they were herself! Everytime she or her nurse called they had the wrong drug–not what I was taking, and once I even got a letter from her telling me my labs were all normal and to keep taking Lipitor—and I had not had any labs done and have never been–nor ever will be!–on Lipitor! She has prescribed 2 meds for hypertension that interact with the 2 meds she has me on for diabetes, and the diabetes meds are supposed to have full liver and kidney workups BEFORE they are prescribed–which she has never done. I got a second opinion last Winter and that doctor felt I didn’t even need to be on anything for diabetes–but he could not see me again because his office quit accepting my insurance. She misdiagnosed an ear infection and gave me an unsafe antibiotic and I ended up in ER. And the latest is that I asked her for a referral to a nutritionist/dietician because I feel the BP and sugar would not be high if I could safely lose weight, and her recommendation? GASTRIC BYPASS! This woman would amputate my finger for a hangnail! )
well today we had a knock-down-drag-out on the phone. I took the 13 RXs she has me on and flushed them all down the toilet except for the Avandia for the high blood sugar and spoke to a Nutritionist on my own who is willing to work with the Porphyria. It is costing me $100 out-of-pocket just for the initial consult–but I think it will be worth it just to have someone cooperate with me. My PCP was not happy. She accused me of not trusting her—to which I laughed (I had just told the Nutritionist that I would not trust that doctor to water my plants when I was gone, let alone treat me for anything! But I didn’t say that to her.) She sounded like she was going to cry. (I must admit–I have never made a doctor cry before! It was disconcerting.) I told her I will continue to take the Avandia and to follow up with her IF she will do the proper testing for liver and kidney and she told me to schedule the appointment. But she also told me–among other things–that if I did not take the meds she prescribed for me to take that I ‘would not last 6 months’! I told her if I did take all her pills I would not last 6 more weeks. I asked her if she realized how many of the meds interact with each other, and her reply to that was that she judged it worth the risk. I told her I didn’t. She told me I was just way beyond the expertise of anyone in that clinic. I promised her that as soon as there was an opening I would find a new doctor and relieve her of the burden.
guess this is the part where my faith is going to make me well huh?
Ravyn
