[thomaca77]

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

[jazzbo]

Oh Carisa,
I wanted to cry when I read your post. How can someone who is just trying to do the right thing run into so much cr*p from the doctors?
I just joined this forum recently, and just started insulin this week, so I cannot help you. But I am sure that there are people on the forum that will give you good advice. It's good to vent! I hope you can get some help.

[fgummett]

Hi Carisa... welcome to DF! I think you have finally found your fountain of sanity Doctors have their place as part of your health care team (along with nutritionist, pharmacist etc...) but with D I think you already know the right answer... take control, test and log to find out how YOUR D works. Hang in there... things are only going to get better from here on in.

I also sincerely thank-you for your observation about the common attitude shown to type 2... if I hear one more platitude that goes like, "you just need to eat less and exercise more... all it takes is will-power" I may just have to strangle someone with my insulin pump tubing!

[xMenace]

Welcome Carisa,

But please get to the back of this ****ing line!


( BTW rants are very much the norm around here )
---------------------------------------------


You mention fasting tests. This link has some articles on basal testing. It is a little more regimented than what I think you are doing. Also pick up a copy of Pumping Insulin by John Walsh. Below are my basal rates (yellow). It illustrates the type of settings I think one should strive for (flatliners excluded). Of course our patterns are unique. You have to find your own. Basal testing will do that.

[shiftzor]

Don't worry about post here with rants . If I was you and like many others I would set the basal/bolus rates yourself, as insulin requirements are constantly changing. At the end of the day only you know yourself and what affects you, so why would a doctor know you any better? Find another doctor! He may be the "best" but if you don't get on with him you will never get the help you want/need. Find another less good endo that is willing to work with you, you will get a lot more out of it.

[Scratch]

I'd certainly be frustrated too if I had had a similar experience. There's already been at least a couple of people on these boards this year who went through the misdiagnosis cluster**** before finally getting properly diagnosed.

Unfortunately your eye doctor probably won't write the scripts.

It can be hard to find a good doctor. I'm lucky enough to have found a GP who can tell that I have a very good grasp on how to handle my situation and he also knows more than me in some areas to help supplement and augment the information that the two of us need to give me the RXes and testing orders for labwork to handle being a type 1 diabetic.

[xMenace]

Originally Posted by shiftzor

Don't worry about post here with rants . If I was you and like many others I would set the basal/bolus rates yourself, as insulin requirements are constantly changing. At the end of the day only you know yourself and what affects you, so why would a doctor know you any better? Find another doctor! He may be the "best" but if you don't get on with him you will never get the help you want/need. Find another less good endo that is willing to work with you, you will get a lot more out of it.

I agree. Rate setting is ultimately our responsibility. Drs are the devil in our ear, but we make the decisions. Cripes, we make a decision every time we do anything in life: eat, exercise, get sick, get stressed, have sex, sit at a pc all day, go to sleep, or whatever. It makes absolutely no sense for a doctor who isn't intimate with your life to make any changes. He and our D-team need to focus on tranferring education and skills to us - the teach them to fish and farm vs handing out food argument. He can make suggestions, educate you, give you advice, and write the stupid prescriptions, but it's my job to make the decisions. It's my life!

[Jan B]

You poor thing. I guess I am very lucky to have my doctor; and he's not even an endo. He learns from me, and I from him. I agree with Shiftzor that you should not give up on trying to find the right doctor. There are some good ones out there; but I've also had some horrible ones and some very bad advice, including that you cannot go low on Lantus!!

WELCOME to DF!

If you cannot find a good doctor, just use the best one you can find for your meds, and come here for support and advice.

[fgummett]

I have a Family/General Practice Doctor and a Endocrinologist; both of them know full well that I have worked to be knowledgeable about my own condition and they are willing to work with me. I see the Endo. every 6 months for a check up and although he originally started most of my medications, I usually get my refill scripts from my GP. I manage my own insulin... no question.

[morrisma]

Wow, that was one of the CLEAREST rants I've yet read. Usually they deteriorate with the frustration involved.

You have the correct information, your doc does not. Either argue him into oblivion or ignore him and do what you know is correct for you. I choose the ignore path. Smile and agree with him and do the right thing.

Take a deep breath, imagine a sunset off the coast of Kona. Smile and let the air out slowly. Works for me in these situations.

[Janlaton]

Welcome, I do not use insulin so can't help there. So someone did not tell you to give the nurse your numbers. Big deal. Maybe the ed center should have done that but what's wrong with giving them out again?

I know the medical world in general is confusing not just on Diabetes but on many things. Like I just got a letter from my insurance company talking about now that you have Chronic Obstuctive Emphysema.... I hit the roof with the dr's office and found someone had miscoded my last visit, Which was acute bronchitis. Hold on tight, be ready for a bumpy ride, say a prayer and do what is right FOR YOU.

Praying things will settle down.

[mortis505]

Hello Carisa and welcome to DF. That endo may be "the best" in the area, but if he is unwilling to listen to his patients, then he isnt worth a pluged nickel. Sounds like some of the doctors I knew back in Wv. If you can modify your basal and bolus rates and maintain a relatively even flow throughout the day, then explain to the doctor that while you appreciate the he is an expert in the field, his IS NOT an expert on your body. And since bodies differ, then you will be more than happy to listen to what he has to say, but will manage your care and your insulin regimen with what works for you.

[steamfan261]

Originally Posted by mortis505

Hello Carisa and welcome to DF. That endo may be "the best" in the area, but if he is unwilling to listen to his patients, then he isnt worth a pluged nickel. Sounds like some of the doctors I knew back in Wv. If you can modify your basal and bolus rates and maintain a relatively even flow throughout the day, then explain to the doctor that while you appreciate the he is an expert in the field, his IS NOT an expert on your body. And since bodies differ, then you will be more than happy to listen to what he has to say, but will manage your care and your insulin regimen with what works for you.

My goddaughter is a trauma surgeon, and a brilliant one at that. She asserts that people become endocrinologists because they lack the most basic ability to practice medicine in any reasonable way.

Her language was actually a bit crustier than that. She suggested that the average endo was about "as useful as tits on a boar hog".

I'm a Type II who had failed at virtually every method of control from diet and exercise to orals to MDI, and now the happy owner of a Medtronic 722 and CGMS. Were it up to the endos I've visited, I'd probably be treating my diabetes by burning cow dung and waving bird feathers over my left knee cap. Their contempt for Type II's was obvious, blunt and totally demoralizing. Eventually I gave up. I changed PCP's a while back on the theory that if I was going to pay a doctor to ignore me, I could at least hire one closer to my home to do it.

He turned out to be a warm, caring, listener who's married to a diabetic. And before very long, I became a pumper. 60 days on the pump have taken me from an A1c of 13.5% to 6.7% and he tells me from my numbers that the next A1c will likely be under 6.

I don't know how it is with Omnipod, but the CDE from Medtronic who trained me in the use of the pump has been an awesome resource.

In any case...

[Mich]

Hi Carisa,

Welcome. You've obviously come to the right place. We all pretty much manage our own insulin here. We ask & listen to lots of others about how they do it too. I've never considered doing it otherwise in 48 years of Type 1.

Every time I listened to a "diabetes expert" who told me what to do, then sent me home, I learned the same lesson: How we feel and what we do is MOST IMPORTANT TO EACH OF US, not them. The Doctor may be the most caring person on earth, but he or she is not there at 3 AM when you go low.

My thoughts are exactly as everyone else has said. Manage your own insulin and blood sugar and you will be better off.

By the way, while your pancreas is playing Jekyl and Hyde, the best endo in the world could not anticipate your highs and lows. You will just have to test often and learn to treat that "low feeling" immediately. It's completely frustrating, but things will settle down. Mine took a couple of months, then surpised me a year later with one more burst of activity. At that time, they didn't KNOW about the honeymoon and every doctor said I was doing it myself somehow by misbehaving. Blame the kid, right?

Sooo, again--welcome. We're glad you're here, rant and all. (We all do it )

Mich

[thomaca77]

Originally Posted by morrisma

Wow, that was one of the CLEAREST rants I've yet read. Usually they deteriorate with the frustration involved.

You have the correct information, your doc does not. Either argue him into oblivion or ignore him and do what you know is correct for you. I choose the ignore path. Smile and agree with him and do the right thing.

Take a deep breath, imagine a sunset off the coast of Kona. Smile and let the air out slowly. Works for me in these situations.

See, I CAN make myself clear! Just not to doctors, who apparently speak some form of pseudo english fake latinesque language designed to confuse and obscure.

I have tried the "argue into oblivion" plan. I am now left with the smile and nod option. It is good advice.

Apparently the powers that be have heard my rant, and not an hour ago, the Nurse of BigCity Dr. called me (finally), and huh, funny enough, once I explained the charts and what was going on SHE AGREED WITH ME. While I am relieved that we are now working together (without the Dr's pesky interference), Is it wrong of me to wish they had just taken the time to listen to me in the first place?

Do I really have to go through 3 weeks of phone calls, emails, and arguments after every 3 month appointment? Jeeeze! (yes, this is not the first time)

Thanks for the support, guys. Unless you, your spouse, or your child has it...YOU JUST DON'T KNOW.

And Steamfan261.....Thanks, you are a RIOT!!! ( The smell of burning feathers still lingers from my first endo.......)

-Carisa