October 15, 2009
So today started off very early. I had to check in at Dr.’s office at 8:30am for a 9:00am appt. All of the specialists are in Oklahoma City, which is a 70mile drive for me so I left home at 7:15am. He was over an hour getting to the room to see me, what a surprise huh? He came in and we talked for a while about my previous appt and my diagnosis of Chiari and how it related to my hyper mobility as he calls it. He refuses to use the words Ehlers Danlos Syndrome at this point. I mention to him that he told me at the last visit that I most likely had EDS in opposed to Lupus, which I was originally sent to him to rule out. He then said yes, EDS is very common and it’s a marker a trait, a gene, I have a disposition to migraines, hyper-mobility. He was so passive about everything it really pissed me off. Here I am in pain, on narcotic everyday, unable to sit or stand for long periods and all he has to say is I have a disposition to all of these things. He also asks, what is it that my neurosurgeon wants him to say in his letter? Uhm, what you think about my case, that I have a connective tissue disease, EDS that surgery will or wont help, that the EDS will or wont affect the outcome of the surgery, I don’t know, what ever Specialists say to other Specialists. If I knew that, I would write the letter myself, have you read it to see if you agree, and sign it! I am so frustrated at this point I could just scream. I understand how and why people get fed up and stop going to doctors and just let nature take it’s course. At any rate, I did get 2 good things out of my appointment, 1 was the name of a book, MIGRAINE that I should read to see if it fits me, since I’m such a strange case, (his words exactly), and another specialist to see, a neurologist, Dr. Kaplan, woo-hoo. Another Dr. I am so very tired of this “you’re a strange case” I’m going to scream the next time someone says it. I mean it. It’s getting very old. So, where do I go from here? I called today to try and get in to see if I could get in to see Dr. Barry at St. Anthony’s in OKC but he only see patients that are referred by Drs so I will have my PCP refer me. I am tired now. I think I will just take some meds and go to bed. I understand how people get depressed, go crazy and give up.
October 15, 2009
So today started off very early. I had to check in at Dr.’s office at 8:30am for a 9:00am appt. All of the specialists are in Oklahoma City, which is a 70mile drive for me so I left home at 7:15am. He was over an hour getting to the room to see me, what a surprise huh? He came in and we talked for a while about my previous appt and my diagnosis of Chiari and how it related to my hyper mobility as he calls it. He refuses to use the words Ehlers Danlos Syndrome at this point. I mention to him that he told me at the last visit that I most likely had EDS in opposed to Lupus, which I was originally sent to him to rule out. He then said yes, EDS is very common and it’s a marker a trait, a gene, I have a disposition to migraines, hyper-mobility. He was so passive about everything it really pissed me off. Here I am in pain, on narcotic everyday, unable to sit or stand for long periods and all he has to say is I have a disposition to all of these things. He also asks, what is it that my neurosurgeon wants him to say in his letter? Uhm, what you think about my case, that I have a connective tissue disease, EDS that surgery will or wont help, that the EDS will or wont affect the outcome of the surgery, I don’t know, what ever Specialists say to other Specialists. If I knew that, I would write the letter myself, have you read it to see if you agree, and sign it! I am so frustrated at this point I could just scream. I understand how and why people get fed up and stop going to doctors and just let nature take it’s course. At any rate, I did get 2 good things out of my appointment, 1 was the name of a book, MIGRAINE that I should read to see if it fits me, since I’m such a strange case, (his words exactly), and another specialist to see, a neurologist, Dr. Kaplan, woo-hoo. Another Dr. I am so very tired of this “you’re a strange case” I’m going to scream the next time someone says it. I mean it. It’s getting very old. So, where do I go from here? I called today to try and get in to see if I could get in to see Dr. Barry at St. Anthony’s in OKC but he only see patients that are referred by Drs so I will have my PCP refer me. I am tired now. I think I will just take some meds and go to bed. I understand how people get depressed, go crazy and give up.