Working all hours

My better half is European and thinks that the telephone should only be used between the hours of 9 am and 7 pm (or 09:00 and 19:00 as he calls it), calls outside those hours signal a crisis has occurred. "What happened?" is how he answers the phone outside office hours. Also my man works hard, sometimes he works ridiculously long hours. Yesterday he staggered off the red eye from California, caught a cab home, showered, walked the dogs and drove into work. On the way home he drove thirty minutes out of his way to pick up the cat's antibiotics. By the time he had eaten dinner he was wiped and fell asleep watching the Daily Show.
I managed to persuade him he'd be more comfortable in bed and I think he sleepwalked up there. When I checked half an hour later he was fast asleep with two cats on his pillow. So tired, so cute.
So what happened a little later is going to require a HUGE APOLOGY from me for letting my disease interfere with his sleep. I'm truly sorry. I'm sorry that I chose an endocrinologist who phoned me at 9:15 pm to suggest a change to my Lantus dose, waking him up, and forcing him to get up and walk down a flight of stairs to hand me the phone. (He doesn't know how to transfer calls, bless him).
I knew he was pissed when he handed me the phone without covering the mouth piece and said "it's for you, it must be an emergency at this time of night". Oops.

Living dangerously

To make up for his refusal to volunteer for stem cell research, my angel took me to a movie and dinner in town.
Go see Thank You For Smoking if you can. I laughed and squirmed in equal proportions but all the subliminal messages had me craving a strong drink and steak. We ended up at a new place Wild Fin, in Huntington
You know that warning on menus that people who are elderly, pregnant or with compromised immune systems shouldn't consume raw eggs or meat? Like smokers and the Surgeon General's warnings on the cigarette packets, it doesn't prevent me from indulging. I scoff at it. If there is an asterisk next to a dish, that's what I'm going to have. Not just because I am antsi but because I love unpasturised cheese, mayonnaise, carpaccio and sushi. These are real foods. You can keep your coke, cakes and pastry, I couldn't care less. Gave 'em up, never mourned the day; but raw food, mmmm. So when I saw they had steak tartare on the menu I just had to have it. And then I noticed the asterisk. Guess what? They were offering to cook the Steak Tartare for the immune-system-challenged. Isn't that nice.
Me, I like to live a little. So I had the steak tartare and washed it down with a martini. Question: does neat alcohol paralyse microbes?

Now there's a thought

I just asked my man if he would donate his most precious assets to find a cure for diabetes. I'm surprised to find out there are some things he won't do even for me.

Thoughts, please

While I was as happy as a pig in mud about my control the last couple of days (see below), my endo wants to push the envelope to achieve "optimal control". For this she is proposing a couple of options:
i) A pump
ii) Levemir
The problem for me with the pump has always been a mix of vanity (I like my clothes form-hugging otherwise I look like a bag lady), dexterity (my fine motor skills are impaired from another autoimmune disease), laziness (I believe you have to unhook it to shower, swim or have sex) and the big one: ickiness. Even the thought of a catheter has my stomach heaving, and the thought I might accidentally pull it out leading to uncontrollable bleeding....... I am the woman who fainted at the sold out performance of the dark comedy The Pillowman.
As for Levemir, I know nothing about it except it is made by Novo Nordisk. I was a loyal Novopen + Ultratard user for fifteen or so years, but I switched to Lantus (+ Humalog) when it came on the market and I want to know if Levemir will deliver better results than Lantus for me. Does anyone out there have any experiences? I'd hate to be a guinea pig for a wonder drug that wasn't wonderful.
The big drawback for Levemir is that it has to be split am/pm so that would be 6 shots plus corrections, and with the frequent testing I'm starting to feel like a pin cushion.
Any advice?

Am I defined by my numbers?

You bet I am. After tinkering with insulin doses for the last couple of weeks this is what I woke up to. Just like on the commercials. I haven't seen a number like this for a long while. Unfortunately I had a crashing hypo after breakfast but I'm sure with some more adjustments to the Humalog I can sort that out.
I know that my numbers shouldn't make me happy or sad but I'm dancing at this point.

Software

Thanks to Scott and Caro (and their comments to my last post) I have been searching for a widget to make the Lifescan UltranotsoSmart work with my iBook. It seems there are a bunch of programmers out there attempting to solve this problem.
Healthengage looks pretty comprehensive at first glance and you can try it out for free, but to buy it costs a whopping $59.99 just for the software and that is the same price as buying the cable and software from Lifescan.
I downloaded Sweetsheet from Children with Diabetes but I couldn't get it to work with my Mac because I don't have MS Office installed on it. If I had MS Office I would be sending the data on an Excel spreadsheet and wouldn't need the widget.
The one I like best is called Insulindiary and it doesn't actually download the data from the meter, it's just a really neat program from stupidFish23. The set up is a cinch, you can pre-set meals, shots, carbs, add health notes and other useful stuff and it's easy to personalise. I can then save the data daily, weekly or monthly and send it in a readable form to the doctor.
The only drawback, and it's a biggie for me, is that the data summarised does not include carbs and I think the doctor would like to know if the insulin I'm taking is covering the carbs I'm ingesting!
Anyway, the batteries in my meter died yesterday evening, probably in protest to the extra testing I've been doing, so I'm off to buy more.

Discrimination

Not because I have diabetes, no, but because I use a non-compatible i.e. not Microsoft computer.
In an effort to get my BG chart to the endo's office in a timely manner, and as I consider the fax machine to be on a par with 8-track stereo and they can't read a spreadsheet that isn't MSexcel I thought I would hook up my One Touch UltraSmart meter to the internet and download the results. Hah. Denied. This was the message on the Lifescan form that demanded 59.99 + S&H for a USB cable and the Diabetes Management software that I needed to complete the process:
Note: LifeScan does not have a validated cable or software for use with Macintosh
® computers.
What could be harder than dealing with diabetes? Dealing with lazy companies that can't be bothered to write that extra bit of code. UltraSmart? I don't think so.

Health service?

So I'm chatting to my dietician about my hunger pangs (I'm starving, believe me you can here the rumbling from here to San Francisco), and she asks if I'm getting my thyroid tested before I go for my next endo appointment. I was a little nonplussed and said I thought I'd get blood taken at the office and then the endo could ring me with the results. "Oh, that will depend on your insurance" she said. Apparently your HMO can decide whether your doctor takes your blood or they send you to another special vampire facility.
I kid you not, if they can't take blood while I'm at the office, that's it, I'm quitting. I cannot believe the hoops the insurance companies make you jump through in order to manage a chronic disease. I've been through three health systems in three different countries and this is by far the worst. It's also the most expensive. It's as if medical practitioners provide care in spite of the roadblocks thrown up by the HMOs.
My particular bugbear? The slogan of my insurance provider: "There is a better way". There sure is, and this isn't it.

oh, yes, we get "normal" illnesses too

I woke up with a full-blown nasty head cold today and consequent Bg over 300. As if I'm not feeling yucky enough already: streaming nose, runny eyes, scratchy throat and wobbly tummy. Funnily enough I last had a cold this time in 2005 but that was such a stinker it prevented me from going to the SXSW festival in Austin, Texas. Ironically, the music gods are out to get me again - I have tickets to The Pogues in NY tonight.
I will be going. I will be hanky-free by 8 pm. Mind over matter.

Eat more?

Like I'm not fat enough already. My new dietician studied the charts dealing with the BG readings, carb, insulin and exercise regime and pronounced the reason I wasn't losing weight was that my body was starving itself and had shut down. Therefore I needed to eat more. I hate it when I go to see a medical practioner and I leave feeling more sorry for them then I do for myself. I am not starving my body, I eat about 1200 calories a day; eating more protein for breakfast will cause me to gain lbs that will be a beggar to shake off. I know this, I live it every day. If I eat more, I weigh more. Unfortunately the inverse isn't true: if I eat less , I stay the same. Bad, bad body. It hates me, although sometimes I think it is just trying to protect me but is doing a really crap job at it. I was thinking about this as I drove away from the endo's office. If there was a cure for diabetes, would my body then pick out some other weird autoimmune disease for me to cope with. I then spent the rest of the journey imagining the most obscure one. I finally came up with Sjogren's syndrome. Luckily my sweetie called and invited me out for lunch. Yippee, a chance to take my mind of endocrinology and to eat more. A win-win situation, my dietician will be thrilled.

Eyes front

Just back from a visit to the opthamologist to check my peripheral vision. I'm not sure what the point of this is as the opthamologist says it is to check the eyes after Grave's Disease and I had that corrected years ago and no-one has done this before. My suspicion is that because my big eye exam in September was so good he needs to make some money and has me running back to the office every five minutes. Or maybe he was just misleading me about the test results , maybe I have glaucoma and I am going blind. I am now going to panic for a while.
In September he said there was no problem with my eyes except for mild "dry eye". I hadn't been diagnosed with dry eyes before but what do I know? I thought it was some sort of diabetes related problem. So I got a free sample of drops and a re-visit a month later. Guess what? The drops had made no difference. Big surprise there. Also he couldn't remember why I was back for a re-visit. Hmm.
Today the lovely assistant did a vision field test. She told me to stare ahead at the light and press the remote every time I saw a light. After ten seconds I couldn't see anything, my eye was weeping so much. This apparently was my fault. "Do you have a problem with tears?" "Why don't you blink more?" I kid you not. Read my freakin' notes people. You diagnosed me with dry eye. Therefore my eye will make tears. Good grief. Plus if I blink I'd miss a light, no? And she told me to stare ahead. If I'm staring I'm not going to blink, that's how we show we have no fear. Anyway I tried to comply with the contradictory instructions on the other eye and I'm guessing I missed half the lights by blinking like I have a nervous tic.
Every time I go to that place I feel like I have committed some faux pas or other. Last time it was because I didn't know how old I was. I know my date of birth, and it's written on the top of my chart so why would I have to remember how old I was? Apparently they need it for the tests and they are incapable of doing the math. I suggested that they work it out for themselves as I didn't need to know my exact age, in fact it is detrimental to my well-being to be reminded of it. I don't think a sense of humour is requisite for a job in the medical profession here. Shame.

No appreciable difference

It's been two weeks since I saw the dietician and as preparation for my re-visit on Friday I've been assessing the correlation between BG readings, carb intake, insulin amounts and exercise, and it doesn't make for easy reading.
My BG numbers are no better than they were before. In fact I have had higher highs and lower lows than I have ever had. Although I have weighed everything carefully, the amount on the plate is still the same as before, which shows that after twenty years I had an accurate idea of what 15g of rice or bread looked like. Consequently the need for adjustments was not as great as the dietician (or even I) had thought. I actually eat the same amount of carbs, protein, fats and veg at lunch and dinner. Breakfast is always Total and skim milk, or a slice of toast. So the base number of carbs remains the same and I just have to make the adjustment for a high or low BG reading. But the adjustments I make now based on the mathematical formula the dietician gave me are not yielding any better results than my old method of whoa that's high I better add 2-10 extra units of Humalog, and pass the juice, I'll eat first and shoot up later.
The exercise, as it always has done, causes a delayed reaction hours later and it makes no difference if my BG is 160 before I exercise or 120, if I take an extra 15g of carb or not.
All in all, I feel extremely frustrated, which pushes my blood sugar up; which is the reason I stopped testing so frequently in the first place.
Oh and just to add to my frustration level, the endo's office can only take results that are faxed in and I moved to the 21st century six years ago and dumped my fax machine then. My dietician can get email but can only read the results in a MS Office format and I, of course, am an Apple sort of gal. So I have to transpose everything.
And even more frustratingly my HMO requires that my PHP sends a referral to the specialist every three visits. So I have to call the family doctor and remind them of this. I have better things to do, they have better things to do. And the HMO know they aren't going to refuse a specialist visit, it would risk a lawsuit, so folks at Oxford Health, why bother? Do you really think most people would set up needless visits to medical practitioners? Or do they think that specialists are requiring patients to go through more follow up visits than is good for them?
This is another reason healthcare in this country is so damn expensive. Too much time and money wasted on unnecessary administration.

Vacation Time

So a couple of lapses in the training program due to a weekend trip to Southern California. Something about getting up at 3am to make a 6:30 plane because my sweetie is a sadist and then sitting six hours on a non-stop flight caused the BG to skyrocket to the limit of my meter's capability. This in turn freaked me out and made me feel horrible and wobbly. Several shots of Humalog, a wee nap and a couple of hours later I was much more normal and ready to sightsee. Unfortunately a huge storm struck San Diego, including hail, thunder and lightening so we ran from coffee shop, to lamp shop, to hotel. Whereupon all that extra humalog caught up with me and I tested the lower limits of the One Touch. Didn't feel much like visiting the hotel gym. Beginning to think blood testing isn't that great either.

Oh, so appropriate

This is how I feel about managing these auto-immune diseases, it's hard work and I'd rather be in Paris. I love this poster, it's designed by the guys at Despair.com as a response to all that motivational merchandise out there. Finding the positive side in misfortunes may work for some people but I'm too much of a grouch to be swayed by an "inspirational"quote. I'd rather have a giggle at life's ironies.

Highs and lows

I guess the exercise regime must be working. That's the only reason I can think that I would go completely hypo while eating pasta with vodka sauce. Not before, mind you, not after but during. I could not believe it. I had to check my bg because I didn't believe it. That's hard to do while your hands are shaking and you can't see straight but I got my honey to check it and the numbers don't lie: 46!

I'm attributing it to the treadmill sweatfest eight hours earlier. Great. Delayed reactions are my favourite. And I'm trying too avoid the bad hypos because they make me eat the entire contents of the fridge and then sleep for a few hours, and that's guaranteed to pack on the pounds. Grr. I've been doing this for twenty years you'd think I'd have a handle on it by now.

Getting fit hurts

The treadmill is going to kill me, or at least cause a nasty injury.
I'm blaming an inanimate object for my own stupidity and clumsiness. Pathetic, but it makes me feel better. Much better than confessing that I was working up a nice glow as I power walked, so I decided to shed a layer of clothing, while the band was in power mode. Somewhere between taking off my iPod headphones and pulling the sweater over my head I lost my rhythm and found myself on the floor at the back of the treadmill.
Yes, there is a warning notice on the treadmill but it says "Do not stand still" it doesn't say "Do not shut your eyes as you take your sweater off as you will stop walking and be propelled backwards so fast you won't know what happened". If it had said that I wouldn't have attempted the feat, honest.

Whose crazy idea was this?

And why would I try to follow them on a 100 day regime that I knew would torture me? It seemed such a good idea: 100 days to get fit. Brilliant. Just the motivation I needed after a year of no formal exercise routine. It would be part of the whole "taking better care of myself" promise: testing before very meal, weighing the carbs rather than eyeballing, actually scheduling check-ups and going through with them. Yes, I would be a better person and my BG would be perfect.
I chose a new endo, and after waiting three months to see her I had all the tests done, asked to see a dietician and stepped up the informal exercise, which was walking the huge hounds 45 minutes a day to 60 minutes.
Combined effect of this new routine after one month? A1c: up, blood pressure: up; most disheartening of all: I have gained four pounds. It's enough to make me drown my sorrows in a vat of champagne with a side order of Sachertorte. However, I am made of stronger stuff, I am not a quitter. No, not me. I will increase my exercise, I will sweat off those extra pounds, I will achieve better glucose control. I will join a gym.
I used to have a lovely gym, five seconds away. The management was lovely, the gym rats were friendly, the fees were reasonable. But I moved from my perfect gym to a new town, miles away from a shop, never mind a gym so I have to be very motivated to get in the car in the cold, and rain and snow and exercise. Still I am on a mission here so Ii started to check out the gyms in the area. Firstly they are much more expensive, some are too high-powered for me (shouting at me doesn't motivate me, it traumatises me), some don't seemed to have any trained staff. In short, no great gym.
But I have a back-up plan, in my basement, alone and unused is a treadmill. It was left by the previous owner and I used it for the first month or so after we moved here in 2004. I would get back on the treadmill, no problem. Well there were a couple of problems. One, it was filthy so I had to clean it before I did anything else. Then I couldn't get it to work. I checked the extension cord: working. I checked the wall socket: working. I checked the safety key: in place. I decided to move it so that the plug reached the wall socket without using the extension cord. I don't know why I did this; maybe I thought there would be more power in a shorter cord?
I learned one thing: treadmills are heavy, really, really heavy. I pushed, and I shoved and I pulled it so that the cord reached. And, nothing! I was totally frustrated and so I yanked the plug out of the wall- it was covered in verdigris. So I ran up to the garage, grabbed some steel wool and cleaned the plug and voila, power. By this time I was covered in grime, red-faced and sweating. I felt like I had had a good workout already. I managed 10 minutes on the treadmill that day.
That was March 1. It's now March 7 and I this is killing me. After 10 minutes I am drenched in sweat, my legs are sore and my back is killing me. Surely it shouldn't be this hard? When does it start to get easier? I'm doing this to make me feel better and live longer, right now I think I may not survive the week.

Spring resolution

Denial. It's been fun: no testing, no check ups = no disappointing numbers on that damn meter, no disbelief from my endo who obviously thinks I am lying or "non-compliant" as I learnt is the politically correct medical term for "I do not know what to do with this patient".
Of course someone somewhere is out to spoil my fun. In this case it's the doctor who refuses to write any more prescriptions until I have a medical. Party pooper.
I briefly consider buying supplies off the web but generic insulin has never been my thing, and I'm as cheap as hell. I want all the techie stuff, brand names etc and I want it for the lowest co-pay I can get. So I schedule a medical with a new family doctor who does not shout at me or about me to the staff.
And suprisingly for all the neglect my BG A1c isn't too bad, blood-pressure is ok, EKG is great and I'm not deaf either. Hurrah.
Have decided to make a belated New Year's resolution and take control. We'll see how long it lasts, for the moment I am taking it one day at a time.