Monday, August 27, 2012

I am just so freaking angry...

RANT, this way by Nesster, on Flickr
RANT, this way by Nesster, on Flickr

WARNING: rant ahead

So if you don't want to hear a long drawn-out rant about how freaking stupid doctors are, do not click to continue reading.

My cardiologist isn't an idiot, and I have an appointment to see him in October, so I will likely not be completely upset after that.

But generally...

The heart surgeon told me it'd take 3 months to recover from my CABG. It's been SIX YEARS so far.

I went to see her about six months afterwards, due to the fact that I was in constant pain in spite of both a Fentanyl patch and Percocets and physically incapable of lifting a gallon of milk. It seemed to me that something was put together wrong in there. She said the x-rays looked fine; I was just a slow healer because I'm diabetic. See, the thing is... I was diabetic when she said it'd take three months to recover too.

The first couple years, I did everything right. I saw the internist and endocrinologist every three months, the cardiologist every six months. I kept my bG under 140 (after I learned to dose insulin, as no one taught me), my A1c was under 6%. I got all the blood work they asked for.

Understand how bad my fatigue was back then, and I didn't have a home health aid yet. I would have to plan carefully to manage my fatigue. I had to make sure I had 2-3 days worth of food prepared before I went to the doctor, because I'd literally be unable to prepare food for 2-3 days after each appointment. Sometimes, I just got bedridden for 1-2 days afterwards. Since hubby was over-the-road at the time, it was really horrid. I was just trapped.

None of them ever had a useful suggestion about why I might be so fatigued or in pain or what I might try to recover. I'm the one who asked for a test for Epstein-Barr, for Lyme's. I'm the one who suggested weaning off the statin when I became unable to climb the stairs anymore. I suggested the switch to a beta-blocker that DOESN'T increase insulin resistance myself. It didn't occur to anyone that... I went into the hospital on no meds and came out crippled and that wasn't normal. One shouldn't be "done" at age 44!

There came a point where I just quit going to the doctors. They didn't have any answers or any suggestions or any help. It cost me so much in time and energy and since it was useless, it wasn't worth it.

I learned to dose my insulin to my meals myself. I ordered the labwork and diagnosed and treated my adrenal insufficiency myself. I also ordered the labwork and treated my rT3 myself. I decided to treat Candida myself, though never actually verified I had it, but saw a huge improvement on ThreeLac. All these things helped tremendously and if they hadn't, I wouldn't even have the energy to consider doing GAPS. I got myself about halfway better, without the help of doctors.

So I made the mistake recently of thinking maybe doctors weren't completely useless. I had a problem: the problem is that every time I inject insulin, my feet blow up with very serious edema. By very serious, I mean it hurts like bloody hell, sometimes to the degree that I can't walk or even stand.

I've been diabetic for a very long time, so I know about potassium. One of the physiological effects of insulin is to cause potassium to be excreted in urine. Even before I was on insulin, as a T2, I excreted huge doses of the stuff, and have had a longstanding potassium problem. For many years, I treated the problem with Morton's Lite salt. But the problem used to be some occasional charley horses in the middle of the night. As it got worse, I switched to K-dur. Eventually, taking K-dur to control the edema got ridiculous. I was taking 10-12 per day. This is a stupid amount of potassium to need to take. And my feet were STILL swollen, just what I call "normal" swollen as opposed to crippling swollen.

I normally wear a size 10 shoe. When my feet are "normally" swollen, I have to wear a 13. When they are swollen to the point of pain, I can't wear shoes, can't stand, can't walk. If I lie down with my feet elevated for 4-6 hours, I can get back to the size 13 and walk again.

You have to understand about K-dur. Potassium is VERY dangerous stuff. Sudden changes in serum potassium levels kill people. It is what they use for lethal injections! So to make potassium supplements safe, the pills are microencapsulated. This makes them HUGE. It would not be accurate to call the suckers horse pills as I doubt horses could swallow them easily. They are literally painful for me to swallow. So... taking 10-12 per day is just not practical.

Of course, the edema is directly correlated to my BP as well; I haven't even tested my BP in a long time because I can pretty much tell what it is by looking at my feet. I do NOT have hypertension when my feet are a size 10, not since I started raw milk! The BP only goes up when my feet do.

So I went off insulin again. Yes, this was stupid, but frankly, I was beyond caring. The only thing I know of that allows me to walk while on insulin is large doses of K-dur.

So... I decided to address this and went to my family doctor. And, of course, having been off insulin for a while, my bG was through the roof, and my A1C crazy high. And he agreed to send me to an endo to work things out cause... I just CAN'T swallow these freaking horse pills 10-12 times a day.

The nearest endo that takes my insurance is almost two hours away. My home health aid took a day off her main job and took me to my first appointment, which as is normal, was with a nurse practitioner in the office. And it was... well, a slightly stupid appointment. We agreed I should be on insulin. We agreed I would TRY to take much less than I have in the past, start with 30 units Lantus instead of 45; start with a 1:10 ratio of Novolog for carb, whereas I used to take 1:4. And maybe I could get by until I could see the endo, which was obviously critical because I just can't be in the position of choosing between controlling my bG and being crippled.

For a month, I logged every shot, carb and protein content of every meal, every K-dur and the condition of my feet. I had started at 2 K-dur a day, moved up to 4, and it was a balancing act as my bG, while down under 200 mg/dL for the first time in months, but I still had pretty bad days with regards to my feet, including one day where I literally could neither stand nor walk. But most of the time, if I lie with my feet elevated, the swelling will go down most of the way, if not entirely. So between elevating my feet and K-dur, I was mostly not crippled while not taking enough insulin.

Finally, I had my appointment with the endo. Hubby had taken the day off work to take me to see her. This is a big deal to us, as I have been disabled, and thus without income, for 6 years now. Last year, he had cataracts and had to have surgery, which we borrowed over $3000 for. We have not yet finished paying that off, and have to save an additional $3000 for the other eye. So... a day off work is a big deal; it cost us a lot.

The endo did not look at my logs, and would not discuss edema. She just kept asking me to log my bG (preprandials only, she is opposed to me testing postprandials) on her log sheets. OK, I have no problem with that, it makes sense if you read lots of logs, it'd be convenient if they were all the same format. But... they have nowhere to log insulin. Or food! So she wanted me to fax her a week of daily logs WITHOUT any food information or dose information included, just preprandial bG readings!

While my head is spinning trying to understand how she is possibly going to know I took a larger shot because one day I had pancakes for breakfast versus a smaller shot because another day I had bacon and eggs, and what she thinks she can possibly do with such a stupid log, I keep trying to bring her back to the fact that something is seriously wrong because my feet blow up every time I take insulin. And NO ONE should need to take this much K-dur just to be able to walk.

And she says it has nothing to do with her, because the ONLY three organs involved in fluid balance are the heart, liver and kidneys.

I could not comprehend how I had managed to find an endocrinologist who had never heard of the hypothalamus or adrenals!

I seriously went into this appointment hopefully. I didn't know this endo, had never met her before. I guess my mistake was in allowing myself to be hopeful at all. I should never expect a doctor to do anything useful. It's just asking for disappointment.

I asked for, but did not receive, test slips for aldosterone/renin tests. No, the stupid endo just ordered another A1c. I ALREADY KNOW MY A1C IS BAD! I had barely gotten my bG consistently under 200 the last month, and it was completely out-of-control the two months previous. We KNOW MY A1C is BAD! Sheesh!

She said I should go back to my family doctor and ask for referrals to the right specialists. See, since my sister has Congenital Adrenal Hyperplasia and I have previously suffered Adrenal Insufficiency, I kinda thought an endo WAS the right specialist. As did my family doctor. As did her own nurse practitioner.

<sarcasm>But that was before I was informed by a board-certified endo that the hypothalamus and adrenals have nothing to do with fluid balance.</sarcasm>

Seriously, is she REALLY that stupid or just outright lying to me and thinking I won't know?

Well, I already have an appointment with a cardiologist coming up, as mentioned above, and in my experience, he is not an idiot. I mean, he's not Dr. Davis, but he's not a complete moron either.

So my endo says my family doctor should be sending me to a nephrologist and a hepatologist. I'm not even sure if hepatologists exist, never heard of one before. And frankly, if there is such a thing, I don't see why they aren't in charge of T2 diabetics instead of endos since the liver is what "goes wrong" first, not the pancreas. But I digress...

Steve and I went camping the weekend following the endo appointment, and though I'd brought all my meds, I was so discouraged after the appointment that I just didn't take anything all weekend. Since we were sleeping on an air mattress with no boxspring to shove things under, my feet were not raised all weekend either. And they were normal sized when we got home!

So... it's only been a couple days, and I'm just not inclined to take any freaking insulin. My feet are normal. My bG is not. The bG causes organ damage, and will kill me eventually, but the insulin cripples me TODAY.

The childish part of me thinks I should just take insulin as prescribed, not take K-dur, then call an ambulance once I am unable to get out of bed. Except... given that I have heart disease, letting my BP go that crazy seems dangerous. Of course, letting my bG go crazy seems dangerous too.

But mostly, doctors seem crazy!

I will decide what I will do, and am unsure at this moment what it will be, though it is unlikely to be anything as stupid as in the previous paragraph. I will likely just order a bunch of K-dur from Canada and pay for it out-of-pocket, which we can't afford, but I don't see that I have any choice.

I have limited in-person ranting on this topic, because the point of camping was to relax and unwind a bit, but... I am so freaking upset and just haven't gotten it off my chest. I NEED to rant.

I get to the point where I'm completely exhausted and lie down to sleep and just find myself thinking about the endo and getting angry, tossing and turning, and eventually getting up to distract myself from the rants in my head.

Or... writing the rant for my blog. Heh!

I have an endo who thinks the hypothalamus and adrenals have nothing to do with fluid/electrolyte balance

Or she's just a liar.

I used to work with a programmer who got angry every time he ran into any kind of stupidity in the world, and since the world contains a good bit of stupidity, he was angry a lot.

I have had a few friends who completly LOSE it when someone does something stupid in traffic.

I've never understood the point of getting mad at stupidity, as the world is just full of it.

And yet, every darned time I find some in a doctor, I get utterly furious. Mind-bogglingly furious. And it takes me quite some time to defuse.

People TRUST doctors. They have NO RIGHT to be idjits.