For my regular visitors, if you find that this blog hasn't been updating much lately, chances are pretty good I've been spending my writing energy on my companion blog. Feel free to pop over to Home is Where the Central Cardio-pulmonary Organ Is, and see what else has been going on.

Tuesday, June 26, 2012

Just you wait! Your turn is coming! (updated)

Things are still pretty hectic and my writing time is still sporadic, but I wanted to get this down before too much time passed and I forgot too many details.  So here is a continuation of our new doctor medical practitioner saga. 

Dh had his triple appointment last week.  I made a mistake in my last post; I thought we would get to see the actual doctor, but nope, not at all.  That appointment turned out to be with someone to help with chronic pain, but still another nurse.

When we came in for his appointment, he went to the receptionist.  She looked him up and noted that he was due to see the dietician first, then the diabetes nurse, then the NP.  Dh asked, "what about the chronic pain specialist?"  The receptionist checked again and corrected herself.  The second person was the chronic conditions specialist, who usually sees patients about diabetes, so she had assumed he was there to talk to her about his diabetes.  She apologized for the assumption.

Shortly after, we got called in to see the dietician.

It did not go well.

First off, after the introductions, she asked us why Dh was there to see her.  It turns out that, while she had been able to look at his file, there was nothing specific about why an appointment was made with her.  We just sort of hemmed and hawed a bit, then said we guessed it was because of Dh's diabetes.  He's been having difficulties controlling his sugars, especially when the pain gets really bad (as it has been recently).  He can't get enough exercise because of the pain, the meds don't seem to be doing very much, so we figured he was there to talk about dietary possibilities.

The rest of the meeting was very disjointed, uncomfortable and... weird.  One of the things we found weird was a mannerism; she talked as if we were 5 yr olds.  I wasn't sure what to make of it, but I'll assume she is used to talking to patients who don't research their own conditions very much - or anything else, for that matter.  Who knows?

We were booked for a 1 hour meeting with her and went over time by about 10 minutes.  In all that time, we basically came away with:

- eat more vegetables.
- and lentils.  (looking things up since then, lentils are on the off list, along with several other foods she mentioned, though plenty of sites promote lentils as some sort of miracle blood sugar controller)
- Dh doesn't have to avoid fruit (even though we told her fruit makes his sugars spike badly)
- margerine is better then butter
- butter and margerine both have 45 calories per teaspoon, and that has something to do with why there's no difference in bioavailability between butter and margerine.
- he should eat yogurt and cheese (yes, we did mention he's lactose intolerant, which is why milk isn't on the list, but he should just take lactase and eat them anyways)
- she thinks Dh, who is 6'1", should only eat 1800 calories a day (that was the level of starvation for men in the Ancel Keyes starvation study during WWII)
Now, Dh's diet sucks.  We know that, and it's a point of contention between us.  He'll go on about how he needs to eat healthier, but when it comes time to actually sit down for a meal, he eats little or none of the foods he's said he should be eating.  When it comes right down to it, though, we already know that the diet that best meets his needs for controlling blood sugar is basically an Atkins or paleo type diet - high protien,  plenty of fats, very little carbs.  The problem with this is it's friggin' expensive.  The price of groceries has been increasing quite a bit over the past couple of years and, though we've increased our grocery budget, (it's looking like I'm going to have to find some way to increase it again soon),  it's still not affordable for us to be buying that much meat (and no, vegetable substitutes are not adequate to the job.  They may be for others, but not for him).  When it comes to stretching the food budget, there's little that can beat the cheapness of high carb foods.  They are also a lot easier to work with and work out better as lunches for him at work.  For someone who's struggling just to bring his numbers into the single digits (in the Canadian system), that isn't going to work for him.  Even whole wheat pasta (which he finds disgusting) causes his sugars to spike, so all pastas would have to be out, along with all breads, potatoes and rice, along with fruit. 


So that meeting wasn't particularly useful, and I found myseld dreading the idea of seeing her myself.  Especially since I have even less reason to see her then Dh did, and his appointment seemed to confuse her enough as it was.

Our next appointment was with the chronic care nurse, and I will say right now, she was AWESOME!  To begin with, she had a great attitude, which always makes things easier.  However, she asked us a lot of questions about his injury (the pain of which was the reason we needed to get a new doctor so urgently in the first place) and his history with it.  We also talked about his blood sugars, but it was in relation to everything else.  We learned a few new things from her.  For example, no one had ever mentioned the need to wash your hands with plain soap and water before using a glucometer to us before.  It turns out that just basic sweat on your hands can lead to false high readings.  Scented and fancy soaps can also cause false high readings, as can those anti-bacterial hand sanitizers and wipes.  "Milking" your pricked finger to get a drop of blood out can also lead to false readings, so it's a good idea to vigorously rub the hands together before using the lancet.

You know what else can lead to elevated blood sugar readings?


Of course, Dh has noticed his readings getting wildly higher when he's in a lot of pain, but this is the first time anyone actually said outright that the pain itself has anything to do with it.  With every other person, his diabetes was viewed in isolation from his back injury, and since he's started seeing the NP at this new clinic, the focus has been entirely on his diabetes, with almost no discussion about the injury.  As I mentioned in my last post, stress is something else that can cause high readings, and he's got plenty of that completely aside from his pain, too.

While we saw her, she took his blood pressure.  His BP was normal, though one reading was ever so slightly on the high side of normal compared to the other.  His heart rate was really high, so she checked it again.  It was still high.  No surprise, really.  Aside from "white coat syndrome" (his BP readings are always higher in the doctor's office then when taken elsewhere, though they don't usually cross over into the high range), he was in massive amounts of pain at the time - he needed a cane to walk, and was breaking into a sweat from the pain, just sitting there.  Or should I say squirming, not sitting, as he constantly had to adjust his position to try and alleviate the pain.

Oh, there was something else that stood out.  During the meeting with the dietician, she had asked if we knew what Dh's A1C was.  She didn't see one on his file.  The last one Dh could remember, it was 9.  The chronic care nurse, on the other hand, had no problem finding it in his file.  It was 7.   That is still higher then recommended, but it is a HUGE improvement from where it had been some time ago.  He's cut his A1C to about 1/3rd what it was at one point.  She was pleased by that progress.

In the end, there wasn't much she could do for him.  He's got his MRI in about 2 weeks.  She did say that a major part of controlling his blood sugars is going to be controlling his pain - we're not going to get much progress with his sugars as long as he's having so much trouble with his back.  Until she gets the results from the MRI, though, she wasn't going to suggest anything beyond what we're already doing.

Even so, we came out of that meeting pretty happy.  She was really refreshing, and we felt confident that she was interested in all of his issues, not just his diabetes.  We look forward to seeing her again.

Then there was the appointment with the NP.


Now, the last time he saw her, she'd added 2 more prescriptions to his collection - baby asperin and a low dose blood pressure medication.  Note that he does not have high blood pressure, but the combination is to help protect his kidneys from all the other meds he's taking.  At least that's what we were told back then.

That's right.  Because he's on so many meds, they may be over taxing his kidneys, and the solution is to prescribe more meds.

No, there's no actual evidence that his kidneys are having a problem.

This time, she went over his numbers and latched onto his BP reading.  You know, the one that was normal, but had one number on the slightly high side of normal.  Both of which were slightly lower then the last time he saw her, so even though the low dose blood pressure medication was prescribed to him as being part of protecting his kidneys, she attributed the slightly lower reading this time to the prescription (because apparently any fluction can only be because of meds).  She wanted that second reading to be more in line with the first reading - or at least that was her reasoning - so she doubled the dosage on the BP prescription for him.  She also added two new prescriptions.  One is a cholesterol medication.  Does he have high cholesterol?  Of course not.  However, his HDL reading was lower then she wanted it to be, so more pills!  The other was a low dose anti-depressant.  This was the first one that was actually about his pain; it seems that low dose anti-depressants have been found to help with chronic pain.  At least that's what she said then; at this rate, I wouldn't be surprised if she says something else the next time he sees her.  The first brand of anti-depressant she named was one he'd been put on many years ago and reacted badly to, so she wrote him up for another one we've never heard of before.

As she was writing him up for all these prescriptions, I made a comment about "more pills" for him to take.  That's when she looked at me and said,

"Just you wait!  Your turn is coming!"

Then, before I had a chance to react, she started talking about when my appointment with her was.  It had originally been booked for the afternoon of the same day as Dh's triple appointment, but I hadn't had a chance to take the blood test, so I had rescheduled it to the end of this week.  I'm not sure what to make of her reaction, but her promise - threat? - was clear.  She already intended to put me on prescriptions, even though she had yet to see any new test results.

I was not impressed.

We finished up the appointment with getting Dh written up for medical leave for a week, on top of the days he'd already missed from the week before because of the pain.  By then, he was pretty wasted, so I took him home so he could lay down for a while.

That evening, I took the new prescriptions to the pharmacy.  There's one pharmacist I've been dealing with regularly, and he's quite familiar with Dh's file by now.  He's also given us a lot of advice and information, and we're quite comfortable asking him questions.  I had plenty of them when I gave him the new prescriptions.

I talked to him about the BP medication that got doubled, even though Dh's BP was normal.  He was rather taken aback by that.  He was also taken aback when I mentioned that Dh had just gotten 2 new prescriptions so recently, and now there was 2 more.  On looking at the list, he asked if Dh was having sleep problems.  One of the new meds - the anti-depressant - is often prescribed to people as a sleep aid.  This rather alarmed me because of Dh's severe obstructive sleep apnea.  When I mentioned that, the pharmacist was yet again taken aback that she would prescribe something like this to someone with sleep apnea.  That one was to be taken just before going to bed, but the other new one was to be taken in the morning, about half an hour before eating.  Dh is already taking something at that time, which I mentioned.  The pharmacist did yet another double take and checked the file.  It turns out the two meds are contra-indicated!  So he changed the instructions so that the old one is still taken half an hour before eating, while the new one can be taken with food.

Then the pharmacist noted the NP's name on the prescriptions and realization seemed to dawn on him.  It turns out he's had problems with this NP before - and he's never met or talked to her.  He knows her by her prescriptions.  Which is pretty interesting, considering this clinic is so new, and she's been there only a couple of months.

Dh is still going to take the new medications, though we have serious reservations about it.  He now has 11 different meds that he's on, including an injection, with two of them needing to be taken 3 times a day.  Of all those, only the 2 meds related to his back injury are taken as needed, rather then at set times.

There's something very wrong with this.

I've been really unhappy with all this.  We called this place looking for a new doctor, and we have yet to see one.  The doctor at this clinic we'd originally asked to see comes highly recommended by our pharmacist, I've heard positive comments about her elsewhere, and even Eldest has heard good things about her from someplace else.  Instead, we're seeing an NP seems to be a pill pusher and seems to make her decisions not based on actual readings, but her own idea of what things should be - and she's already got me labelled and is eager to put me on prescriptions, too!

So what do we do?

Today, I called and cancelled my appointments with the dietician and the NP and asked for an appointment with this doctor.  It turns out I still need to book a meet-and-greet appointment, and the earliest that can be done is in September.  That works for me, but Dh can't wait that long.  He's stuck seeing the NP for at least a few more times, as we have another follow up appointment before his MRI, then a follow up for the MRI results.

I still have to book an ultrasound for myself - my reason for seeing a doctor is still about the discomfort in my side - but I'm not going to take the fasting glucose test again.  When I see the doctor in September, I want to ask for an oral glucose tolerance test instead.  Meanwhile, I'm still using Dh's glucometer to test myself, and my non-fasting blood sugar levels are well within the expected ranges for non-diabetics, even based on the printout the dietician gave Dh.

I don't know if I dare hope too much that when I finally see the doctor, it will work out.  For all I know, she might be much like the NP.  Or she could be more like the chronic care nurse.  I don't know.  As I've been looking more into the implications of the change in diagnosis for diabetes, the more disturbed I am about it.  Will the doctor be just as eager to hang a Sword of Damocles over her patients as the NP?

Before the diagnosis change, 4.0 - 6.9 was considered the "normal" range for blood sugars.  7.0 and up was considered high.  Readings below 4 can be dangerous and, for someone with diabetes, readings of 4.5 or lower can be equally dangerous, as their blood sugars can drop so quickly, leading to coma and possibly death.  Still, there was a decent range of "normal."

Then the "pre-diabetes" notion showed up, and readings in the 6 range were considered something to worry about, but was still in the normal range. Readings of 4.9 or lower just don't seem to be discussed much anywhere.  Now, with a diagnosis of diabetes being made with only a single reading of 6.0 or greater, the range of "normal" is so small, it's almost impossible to not be diagnosed diabetic!  It also means that anything under 6 is now "pre-diabetic."  So basically, we're all either low blood sugar, "pre-diabetic" or diabetic.  How does that even make sense??

So if you're reading this and think you don't have to worry about being diagnosed as a diabetic, just you wait!  Your turn is probably coming, too.

update: June 28

Since writing this, I've had a chance dig around some more, and I'm even more pissed with the NP then before.  First off, I'm not finding anything, anywhere, that the threshold to diagnose diabetes has changed from => 7.0 to => 6.0  Going through the Canadian Diabetes Association website, not only does it still say 7.0 and higher for a fasting blood glucose, but it also says that no matter what type of test was used, a second test should ALWAYS done before diagnosis. 

I noticed something else.  For the fasting blood test, everywhere I looked said to fast at least 8 hours.  I was told to fast at least 12 hours.  As we go without food, our livers begin to release glucose to prevent our cells from starving, so even without eating, our blood sugar levels can go up the longer we go without food.  The sites I read also all said that only water is to be ingested during the fasting period.  I was told I could only drink a small amount of water in the morning.  Lo and behold, there is some sort of relationship between water and blood sugar levels, though the why and how of it is not completely understood.  Lack of water can lead to a high blood sugar reading.  More importantly for me, lack of water in general also leads to high blood sugar levels.  I don't drink much water, as I don't enjoy the taste.  Yes, I know, water isn't supposed to have a taste, but ours does.  I don't like bottled water, either, as I find they have an unpleasant taste, too (I find Dasani quite salty, for example).  Though I do drink things like tea, Coke Zero or iced tea, depending on what we happen to have in the house, I don't drink much of anything overall.  I have been recording my food and drink along with my blood sugar readings for the past while.  I also been recording all fluids *except* water in my records, though it's still on my mind as I document it all.  In the process, I've come to realize that not only am I not eating much, but I'm drinking even less, to the point that dehydration is probably a concern. So here I have yet another possible cause for my one anomalously high fasting blood sugar test. 

Not only is my increased level of stress lately a contributing factor; not only is my borderline dehydration another possible contributing factor, but the parameters I was given for my fast were practically a recipe for a higher reading.

And this woman's specialty is diabetes.  I find myself thinking of the old saying, that when your only tool is a hammer, everything starts to look like nails.

No comments:

Post a Comment

Drop me a line...