Thursday, January 14, 2010

All bark and no bite?

A month ago I saw my endocrinologist and had a nightmarish experience.  I wrote about it here.  Today I went back and had the opposite experience. 

Why did I go back when I said I was finding a new doctor?  Many reasons really.  I emailed the nurse who trained me on my continuous glucose monitor (CGM) and briefly told her why I was frustrated with my doctor.  Then I asked her opinion on whether or not I should find a new one.  She has lived with Type 1 diabetes for some time herself and I knew she could sympathize with me.  As a nurse who works with the endocrinologists in the Bay Area she was a good source of information about my other endo options. 

She said that a good patient/doctor fit is essential to diabetes care.  She suggested several doctors I could try as well as a brief description of their personalities.  Then she left it up to me.  I replied that I would check with my insurance company to see who was covered. 

I have to admit I was a little apprehensive about making a switch because the doctors she suggested were so far from where I live.  And how can I guarantee the drive and hassle would be worth it?  The only endocrinologists I have ever seen have been here in California.  I have not been super impressed with either one of them.  My overall control over my diabetes has been terrible in the time that I have lived here.  Is there a correlation between the endocrinologists – so called experts in their field – and my diabetes management?  It’s hard to say for sure.

Partly because of time and mostly because of my agoraphobia, I decided to give my endo another chance.  First I rediscovered myself.  I grew up in a passive aggressive home.  I have learned all too well how to play this card.  I also used to be a pretty nasty person.  As a teenager I never put up with anyone’s guff and I was pretty vocal about my opinions.  Over time I have tried to move away from that person.  I have tried to be more nice and understanding giving people the benefit of the doubt whenever possible. 

In the last year or so I have had several experiences that have pushed me too hard.  I really missed my former self because she would have told people off in the moment and not been so passive aggressive.  At least I had the aha moment where I realized I was an adult and there was no reason why I had to sheepishly follow every bit of my doctor’s advice.  So I took control of myself. 

I refused to wear my CGM because I wanted the doctor to see the numbers I see from my meter.  I wanted him to look at the real data and not the overall picture the CGM data gives.  Heath realized we had a laptop that would allow us to download the Care Link software.  That was huge because I could see my own data and any report I wanted to. 

I also decreased all my basal rates and tried to fine tune my pump settings on my own.  That worked until Christmas.  Now I seem to be insulin resistant in the afternoon.  One bad number and I’m high for the next 12 hours only to crash hard in the early morning.  Then I’m low all morning and high all afternoon again.  It’s a vicious cycle I don’t know how to fix. 

Well, onto today’s appointment.  I walked in there armed with daily reports from the last two weeks.  It’s frustrating that he never looks at what happens in a day and how it affects things.  I was prepared to share that info with him.  The nurse saw it.  She never said anything about it though.  The doctor also saw it but never said anything.  In the end that was a waste of time and paper!  Or was it? 

I arrived maybe five minutes before my scheduled appointment time.  The receptionist did her thing and while I was putting my change back in my purse the nurse said she was ready for me whenever I was ready.  Huh.  Last month I waited 45 minutes before I could go in.  I tried to look at my daily data reports and decide what to say to the doctor.  I didn’t have much time before he came in.  Hmmm. 

He seemed happier than he has been in the last few months.  When he greeted me I forgot I was going to be mean and not ask how he was doing!  Stupid I know.  Through the greeting we realize we are both good.  Then he says, “It’s nice to see you . . .”  That was weird.  Did he know I was thinking of not seeing him?  I replied, “It’s nice to be seen, I guess.” 

We move into the data.  He sees how often I have severe hypoglycemic numbers in the early morning.  He sees how out of control I seem to be in the afternoon.  He did ask how I felt about the Symlin.  I told him I didn’t want to do it.  He commented on how it sounded like a definite no.  I told him it was a definite no last month when he suggested it.  I told him the problem isn’t overeating.  I eat to correct lows.  I admitted that I changed my basal rates dramatically but I still seem to by hypo all morning. 

He decreased my 4:00 am basal rate to almost 0!  Yes, the guy who increased all my basals even after I told him that was exactly when I experience the most lows!  Hopefully this change will keep me asleep and not up between 4:00 and 6:00 am. 

I told him I had increased my afternoon basals with no luck and I even changed my insulin to carb ratio at lunch to 1:4.  Pretty strict.  I told him I tell the Bolus Wizard I’m eating a lot more carbs than I really am in the effort to keep my blood sugars down but nothing is working.  He increased my afternoon basal a little.  I’m ok with it.  It’s almost as high as if I’m pregnant.  That’s how insulin resistant I am in the afternoon now. 

Everything was perfect the week before Christmas.  I was having less lows in the morning.  Although I was still not bolusing for anything I ate until lunch.  I wasn’t having any lows in the afternoon or evening but I also wasn’t high!  That all changed at Christmas when I lived on a weekend schedule for two weeks.  So I’m hoping soon my afternoons will go back to normal.  Let’s hope anyway. 

The appointment was almost over.  He was writing me prescriptions.  He went to check on my synthroid dosage.  When he came back in he suddenly asked, “Are you ok?”  Before I could even answer he says, “Because you seem upset!”  I was floored.  I was not upset at all.  I was quite pleased we were actually working together.  He was finally seeing what I had been telling him for months.  I was anything but upset.  That was weird. 

He told me to see him in a month.  I hate that but since I’m doing lab work I decided not to listen to Heath who said to make the appointment three months out!  As I was making the appointment, the receptionist asked me if I had a few minutes to fill out a survey about the doctor.  Weird!  She said she wanted to give it to me sooner but he got into the room too soon.  Weird.  So I filled out the survey.  I wasn’t as mean as I would have been a month ago!  I tried to be as honest as possible but the questions didn’t really address any of my former concerns. 

Did the nurse I emailed say something?  I don’t know.  Heath thinks they saw the blog post!  Ha ha.  I don’t think so but who knows. 

Strange experience.  I found my voice even though it remained silent for most of the appointment.  I think my confidence in my own abilities showed.  Don’t mess with me!  I can be my ---- former self any time I need to. 

For the first time in six months I drove home without crying. 

2 thoughts:

Dawn said...

Awesome visit. I think Heath is right. They saw the blog. Tee-he. I do think you have to stand up for yourself because they only read textbooks not live with the highs and lows. Until I became insulin resistant I had no idea how your blood sugars could affect you nor how quickly they could change for no apparent reason. I hear you about the weekend routine compared to a “regular” day. I eat at different times, I eat different food and I do different activities. I am thinking it might be good to have weekends all week long. Hang in there and do what is best for you.

phonelady said...

Yep we know our bodies better than any dr could and you just hang in there and do what is best for you . Keep up the good work dear .