thomaca77
05-09-2008, 08:49 AM
Hi, I'm Carisa.
I know I have been a member of this forum for about 5 whole minutes now, and that it is probably the height of internet rudeness to join a forum just so you can rant and get frustration out of your system, but I am in dire need of sympathy and understanding from fellow diabetics who will understand and if I don't rant now, I will explode, leaving little bits of very sugary blood everywhere, and who wants that, right? FAir warning...this will be long.
Ok, so background info on current rant. I live in the southern US in a county that is a little bit backward, bordering a county that has a "big city", in otherwords the best medical care available for about 3-4 hours in any direction.
I am DX about 5 years ago as a Type 2 by the Best Endocrinologist in Backwardsville. After 3 month of worsening numbers on pills, I beg for insulin. She grudgengly bestows it, but refuses to reconsider my diagnosis.
(by the way, after living for a year as a "type 2", I totally feel sorry for them. They are apparently treated by the medical establishment as bumbeling gluttons, even if they are trying to take care of themselves and take their D seriously. Any setback or lack of improvement was deemed "my fault" for not doing it right.)
Anyway, after sitting in on a workshop on Lantus in her office with 15 other Type 2's (all over 60 and overweight, whereas I was 27 and lost 50 pounds when all this started...which of these patients is not like the others?), and not a single one of them know the proper way to store insulin, or to dispose of sharps, or other diabetes 101 sorts of issues, I realize perhaps mine and my doctor's priorities are not in line. When she started refusing to provide me with enough prescriptions for insulin & strips, I started looking for a new DR.
So I go to presumably the best my area can offer...The Diabetes and Endocrine Center of BigCity Hospital. It was worth the hour long drive to get the latest technology, and the best doctors. They do a GAD test, rediagnose me as Type 1, and set me up with a pump (Omnipod, by the way, which for a klutz like me is the ultimate tubing-free experience)
So, Finally, my current problem. On multiple daily injections and Lantus with Dr. BAckwardsville, I go low every day. I go high after meals. I lower my Lantus dose, increase my bolus dose, the Dr. says "Nah-ah-ah" and raises it again, then I go low. This cycle repeats itself at every 3 month appointment.
I get to Dr. BigCity, he says the pump will cure all ills, with the fine tuning ability, and my tendency to blame the Lantus. We set all the pump ratios according to all the standard equations.....now I go low every day, I go high after meals. I lower my basal, raise my bolus, Dr. BigCity says "Nah-ah-ah", and I am stuck in the same stupid loop.
So, I decide to PROVE it scientifically to Dr. BigCity, mistaking him for a reasonable man. I have never been able to complete a series of fasting basal tests, because I go low and have to cancel the test. so I commit myself to a week of fasting tests, no quiting, purposely starting the tests with high BG just to get through them.
Took me over a month instead. A very miserable, hungry, high sugar, low sugar bouncy, starvation ketone month, but I learned alot, I lowered my basals to ridiculously low numbers, I havent gone low in 2 weeks, my numbers after meals are the best I have ever seen, and I now know my body decides it is starving and produces ketones after only about the lenght of time between dinner and breakfast.
Ever so proud of myself and my Excel Spreadsheets, I realize that with the scientific data to back me up, he will have to agree with me.....uh, no. He is misreading my spreadsheets, and when I try to clarify it for him, he disagrees with my analysis.
During the afternoon and evening, my BG drops about 75 points. I started the test at 180, ended at 114, took it agian, started at 150, ended at 80. This indicates to me TOO MUCH INSULIN, dr BigCity says, "no, those are all good numbers and you DIDN'T ACTUALLY GO LOW." I said what happens when I don't load up on carbs and start the afternoon at a decent number, like 120, HE says you can't extrapolate from the tests that I would have gone low had I started there, I said if you can't extrapolate from repeated fasing tests what your BG is doing during a given time period and change your basal accordingly.....WHAT IS THE POINT OF DOING TESTS!!!!!!!!!!!!
DR. BigCity then decides that I am "Trouble", tells me I should see the Education Center for more help in changing my basals, writes me a referral......The educator at the Education center tells me she CANT reccomend changes in my basal, only the Dr.'s office can do that, and I should see the nurse over there if I need more help. I get an email from the Nurse saying "The education center says you will be emailing me your BG numbers, that will be fine, please send your most recent...."
Well, no one told ME I would be sending her my BG numbers, and I told her so and said there must be another breakdown in communications somewhere along the line, because what I want is for help analyzing the data I sent you 2 weeks ago from my fasing tests....then she got a little snotty with me...."There is no breakdown in communication, you obviously just don't know that the Education Center can't make basal changes, so do you want my help or not" kind of snotty.
Like I took myself to the Education Center without a referral from the Dr telling me I should do so and they could help!Arrrgghghghghghghghg!!!!!!!!!!!!!!!!!!!!!!!!! !!!!
So, I get the feeling that they are just passing me around because I am such "Trouble", you know, for actually caring about my numbers, and wanting tight control, and wanting the flexibility of not having to eat every three hours that being on the pump was supposed to provide......
And I can't just go to another Dr., because this was supposed to be the best, (and to be honest there is only one other Endocrinology office in the area that I haven't already alienated). But even with the best, if you don't fit the description in their textbook, they don't know what do do with you, and they don't want to deal with you.
Darned LADA still erratically-functioning pancreas...I want to shout "Die Pancreas Die" just so that I can take the correct amout of insulin for a 30 year old woman instead of that for a 6 year old girl, and get the Doctors off my back for my 20/80 basal/bolus split, that apparently works for me, but can't possibly be right because they didn't learn about this in medical school!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Doesn't seem fair that the less stress I have over my daily, day to day dealing with Diabetes, the more stress I get in dealing with the doctors that are supposed to be helping and supporting me.....I would ditch them entirely if I didn't need the prescriptions. Do you think I could get my eye doctor to write my insulin prescriptions? At least he doesn't pretend to be a diabetes expert!
Thanks for listening, sorry that my first post rivals "War and Peace" for size but not for content.
-Carisa
I know I have been a member of this forum for about 5 whole minutes now, and that it is probably the height of internet rudeness to join a forum just so you can rant and get frustration out of your system, but I am in dire need of sympathy and understanding from fellow diabetics who will understand and if I don't rant now, I will explode, leaving little bits of very sugary blood everywhere, and who wants that, right? FAir warning...this will be long.
Ok, so background info on current rant. I live in the southern US in a county that is a little bit backward, bordering a county that has a "big city", in otherwords the best medical care available for about 3-4 hours in any direction.
I am DX about 5 years ago as a Type 2 by the Best Endocrinologist in Backwardsville. After 3 month of worsening numbers on pills, I beg for insulin. She grudgengly bestows it, but refuses to reconsider my diagnosis.
(by the way, after living for a year as a "type 2", I totally feel sorry for them. They are apparently treated by the medical establishment as bumbeling gluttons, even if they are trying to take care of themselves and take their D seriously. Any setback or lack of improvement was deemed "my fault" for not doing it right.)
Anyway, after sitting in on a workshop on Lantus in her office with 15 other Type 2's (all over 60 and overweight, whereas I was 27 and lost 50 pounds when all this started...which of these patients is not like the others?), and not a single one of them know the proper way to store insulin, or to dispose of sharps, or other diabetes 101 sorts of issues, I realize perhaps mine and my doctor's priorities are not in line. When she started refusing to provide me with enough prescriptions for insulin & strips, I started looking for a new DR.
So I go to presumably the best my area can offer...The Diabetes and Endocrine Center of BigCity Hospital. It was worth the hour long drive to get the latest technology, and the best doctors. They do a GAD test, rediagnose me as Type 1, and set me up with a pump (Omnipod, by the way, which for a klutz like me is the ultimate tubing-free experience)
So, Finally, my current problem. On multiple daily injections and Lantus with Dr. BAckwardsville, I go low every day. I go high after meals. I lower my Lantus dose, increase my bolus dose, the Dr. says "Nah-ah-ah" and raises it again, then I go low. This cycle repeats itself at every 3 month appointment.
I get to Dr. BigCity, he says the pump will cure all ills, with the fine tuning ability, and my tendency to blame the Lantus. We set all the pump ratios according to all the standard equations.....now I go low every day, I go high after meals. I lower my basal, raise my bolus, Dr. BigCity says "Nah-ah-ah", and I am stuck in the same stupid loop.
So, I decide to PROVE it scientifically to Dr. BigCity, mistaking him for a reasonable man. I have never been able to complete a series of fasting basal tests, because I go low and have to cancel the test. so I commit myself to a week of fasting tests, no quiting, purposely starting the tests with high BG just to get through them.
Took me over a month instead. A very miserable, hungry, high sugar, low sugar bouncy, starvation ketone month, but I learned alot, I lowered my basals to ridiculously low numbers, I havent gone low in 2 weeks, my numbers after meals are the best I have ever seen, and I now know my body decides it is starving and produces ketones after only about the lenght of time between dinner and breakfast.
Ever so proud of myself and my Excel Spreadsheets, I realize that with the scientific data to back me up, he will have to agree with me.....uh, no. He is misreading my spreadsheets, and when I try to clarify it for him, he disagrees with my analysis.
During the afternoon and evening, my BG drops about 75 points. I started the test at 180, ended at 114, took it agian, started at 150, ended at 80. This indicates to me TOO MUCH INSULIN, dr BigCity says, "no, those are all good numbers and you DIDN'T ACTUALLY GO LOW." I said what happens when I don't load up on carbs and start the afternoon at a decent number, like 120, HE says you can't extrapolate from the tests that I would have gone low had I started there, I said if you can't extrapolate from repeated fasing tests what your BG is doing during a given time period and change your basal accordingly.....WHAT IS THE POINT OF DOING TESTS!!!!!!!!!!!!
DR. BigCity then decides that I am "Trouble", tells me I should see the Education Center for more help in changing my basals, writes me a referral......The educator at the Education center tells me she CANT reccomend changes in my basal, only the Dr.'s office can do that, and I should see the nurse over there if I need more help. I get an email from the Nurse saying "The education center says you will be emailing me your BG numbers, that will be fine, please send your most recent...."
Well, no one told ME I would be sending her my BG numbers, and I told her so and said there must be another breakdown in communications somewhere along the line, because what I want is for help analyzing the data I sent you 2 weeks ago from my fasing tests....then she got a little snotty with me...."There is no breakdown in communication, you obviously just don't know that the Education Center can't make basal changes, so do you want my help or not" kind of snotty.
Like I took myself to the Education Center without a referral from the Dr telling me I should do so and they could help!Arrrgghghghghghghghg!!!!!!!!!!!!!!!!!!!!!!!!! !!!!
So, I get the feeling that they are just passing me around because I am such "Trouble", you know, for actually caring about my numbers, and wanting tight control, and wanting the flexibility of not having to eat every three hours that being on the pump was supposed to provide......
And I can't just go to another Dr., because this was supposed to be the best, (and to be honest there is only one other Endocrinology office in the area that I haven't already alienated). But even with the best, if you don't fit the description in their textbook, they don't know what do do with you, and they don't want to deal with you.
Darned LADA still erratically-functioning pancreas...I want to shout "Die Pancreas Die" just so that I can take the correct amout of insulin for a 30 year old woman instead of that for a 6 year old girl, and get the Doctors off my back for my 20/80 basal/bolus split, that apparently works for me, but can't possibly be right because they didn't learn about this in medical school!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Doesn't seem fair that the less stress I have over my daily, day to day dealing with Diabetes, the more stress I get in dealing with the doctors that are supposed to be helping and supporting me.....I would ditch them entirely if I didn't need the prescriptions. Do you think I could get my eye doctor to write my insulin prescriptions? At least he doesn't pretend to be a diabetes expert!
Thanks for listening, sorry that my first post rivals "War and Peace" for size but not for content.
-Carisa