Sunday, August 4, 2013

What up?

I'm thinking of resurrecting my blogs...searching for some cohesive theme for the content of this health related blog.

So. What IS up?

1) my weight
2) fatigue level
3) number of hypos I'm having lately
4) frequency of exercise
5) my job satisfaction
6) getting xiaflex for dupuytren's in my right hand

So not all bad.

What's NOT up, thankfully is my A1C - even though I have been so pessimistic about it lately.
Also NOT up is my level of travel - much less travel with my new position I started in April. A lot of job stress, but not the kind that makes me crazy - more the kind that you attack and address and get things done. So I'm happier at work and rebuilding a routine that can include exercise - though time is still a major challenge.

I started using "MyFitnessPal" app on my iPhone to track calories and exercise - I really like it and encourage anyone interested to check it out. The Weight Watchers thing isn't working for me - too much calculating when combined with my carb counting - straight up calories just make more sense.
Check it out here!

I'd like to write a post about Duypuytren's and my experiences so will put that in the hopper.

Tuesday, December 18, 2012

Theme Schmeme

It's been so long since I posted anything on this blog that I'm not sure where to start. So many times I've thought to myself "Hey self, you are experiencing an interesting experience - why don't you go blog about it a little?"

But after I'm done doing Wii Zumba, the only real workout I'm likely to get all week, I'm moving on to some other chore or important Thing, and never get back to describing how I broke into tears just as a physical release and an overwhelming gratitude that I am healthy enough to do Zumba, even if it is in my own living room. With Wii. (don't judge)

Or when I'm feeling so powerless over the past few months since I've been learning about all these new cancer drugs in development at my company - wishing the next miracle drug were HERE already for my beautiful warrior of a step-sister. That topic deserves a whole post about cancer drugs and what I'm involved with to target drugs to the right patients with better diagnostic tests and how much that could help the world.  But my aim is true. It has been a pretty small scope I've been obsessing over for weeks. And as of last Friday, December 14th, my small selfish obsessions became completely meaningless. We lost my Warrior Sister in battle. Shit.

How about the angst I felt walking down the street from yet another evaluation/appointment for Wild Thing to figure out the best way to help him navigate a world he isn't quite conforming to. His brain is wired a little differently. He is so sensitive and intelligent and hilarious and beautiful. He also has a lot of anger sometimes, and a lot of hyper behavior, and an inability to tolerate too much noise or "weird" tastes, textures, feelings. sigh.

I'll spare mention of Teen Wonder for the moment, since she's doing well with college and navigating it pretty much as well as I had hoped and expected. But I still worry...  And I'll spare Mr. Wonderful, who is my partner and co-pilot on this crazy turbulent flight of life. He too is deeply flawed like the rest of us in our house.  Marvelous, interesting, loving people who are all deeply flawed around here.  At least we're not boring.

But let's end on a happy note. This is the first Christmas season since 3 years that I've been healthy and able to go to all the events, trim the tree and decorate the house, bake cookies (well, I WILL bake some before Christmas gets here, I swear it). I even took a business trip to Basel the first week of December, and I didn't get sick there and stay in a strange clinic for a week only to be flown home in a Lear jet by MedJetAssist (buy their insurance btw). And I was able to go at all since I haven't had an "episode" since I got home from the Stanford hospital in January.

That's worth a lot.

Friday, July 13, 2012

Getting fat is a good sign that your digestive system is working...(aka adventures in low-carb eating part 1)

But that's about the only good sign that weight gain heralds. Except that I do try to get fat eating only delicious food and drink. So there's that.

Really I should give this post a different title that would reflect what I have been up to. But it's related in a way because I am trying for a very low-carb diet right now.  Not to lose weight (wouldn't say no to a 10 pound loss, but not my current goal) - no, I'm trying this because I just have to face the music. I have to listen to the Oldies station and ignore Alternative. Except now, this may be "Alternative", so WTF. Let's just move on.

I finally read a book that I have been actively avoiding for at least 2 years.  It's called "Dr Berstein's Diabetes Solution" or something very close to that.  Any diabetics in the audience heard of this book?
Here's the amazon link for The Diabetes Solution - there are tons of reviews and opinions you can peruse.

Well, Dr. Bernstein is a self proclaimed heretic among ADA experts, and his methodology is largely derived from experimenting on himself.  That last part actually appeals to me since as a scientist, it is easier to think of trying changes as experiments rather than mandates from a doctor who will proclaim you "non-compliant" when you are unable to produce the textbook responses they expect. Disclosure: this is a major pet peeve of mine? the whole concept of "non-compliance" in diabetes. Non-compliant to what? Your guess in the dark about what might or might not be a relevant tool or habit for my particular body and lifestyle? I require some serious logic and evidence based medicine before I will blindly comply to anyone's directions when it comes to my body. I'm a scientist and a veteran diabetic so don't treat me like a neophyte. Don't just assume that I'm sitting around eating any sugary treat I an get my hands on while not taking my insulin at appropriate time. And when I do make bad choices, don't treat this as a major moral failing.

That's all I'm asking. I have yet to have a doctor who has themselves have to deal with a chronic disease like diabetes. seriously, I just think the majority don't get it.

Bad patient anyone?  That's just how I do.

Anyway, back to Bernstein's solution. I resisted reading the book for so long because I thought it would be more of the same. Like a reformed smoker preaching to you about the evils of tobacco, or any type of addict or reformed "sinner" who has seen the light and has the discipline to live "right". And if you just tried hard enough, you wouldn't have these problems, and THEREFORE (conclusion not based on logic) all your health problems are your own fault. Like I don't already tell myself all that bullshit everyday of my life on my own, even though I KNOW it isn't a fair accusation to rain down on my own head. BUT HE DIDN'T WRITE THAT WAY AT ALL!  He was very compassionate about the suckiness of diabetes, the fact that none of us "caused" our diabetes, and that the guidelines we get are confusing, conflicting, and often just wrong.

That got him in my door at least. The guy is more than sympathetic to the foibles of humanity and acknowledges the folly of all the different ADA, AHA, and USDA guidelines on nutrition, particularly as applied to diabetes.

Here's the major yucky-sucky - this guy targets a total of 30 grams of carbs per day, including the 5 or 6 grams (no matter how complex) from your cups of green leafy veggies. He doesn't eat any fruit or any kind of recognizable carb based food aside from veggies. And no tomatoes, carrots or beets in his opinion.
Fruit is out of the question.

Now, I can't live with that in its entirety - no berries? what? no tomatoes?  I can live with spaghetti squash instead of noodles, but no marinara? c'mon!! And I have to make at least 4-5 pies per year. Cake and cupcakes I can bake and not eat. Even more cookies I can actually turn away from. mostly. But pie?  I still consider pie a balanced food item and don't put huge amounts of sugar in mine to start with.

okay. But I read the book. And then the same week a piece came out in the NYTimes about how a calorie isn't necessarily a calorie. ("What Really Makes us Fat") And that the low-carb diets really do have a different effect on your metabolism than high-carb low-fat diets.  By then I'd been living it already for 2 days. I got through the 4th of July without a single cupcake, cookie, or sugary cocktail. It wasn't that hard actually - lots of meat and salads around everywhere.

Bernstein wants diabetics to maintain 83 mg/dl. That's his magic number. you can allow higher for insulin takers, and for gastroparesis irregularity. So I'm shooting for 70-120 as my target range.  Some days have been tougher, but with smaller amounts even it is easier to calculate and not OVER calculate in the wrong direction to a huge degree.  So I have had a couple of days of stubborn highs. And a couple of scary lows. But not many - much fewer than with a "regular" diet. The highs are in the 140-180s instead of the mid to high 200s. The lows come on slower so I've only badly over-treated one time. I am on day 14. Two weeks.

I don't think I can eat this way every single day for the rest of my life. But if the splurges become notably infrequent, that would be okay. I don't like the bG excursions that follow even though I can usually rein them in within a few hours. I think it may be tenable to live the great majority of my days taking in low-carb and high protein. I've been wearing CGM (continuous glucose monitor) and I have to say that it feels nice to see the flat lines.

So low-carb I will stay for the time being. I'm curious to hear about other's experiences with experiements like this. We are all built differently and change over time. On the other hand, I'm always open to new ideas!

Getting f

Tuesday, June 5, 2012

unacceptable. condition.

Would I like to send Diabetes to the dungeon for a million years, you mean?  
Why yes.  I would.

Yes. The Earl of Lemongrab is how I'm feeling right now. Rigid and mean. And crazy.

I've been having a sucky time with this condition lately. It is Totally Unacceptable.  I need to get an official A1C done, but I have the home test that is now available again. Let's just say, I'm not any closer to my goal of 7%.  I'm not even going to dream about the newer recommendation of 6.5% until I get to 7.

I've been wearing CGM. I've been testing a gazillion times a day.  And I have proof.  These are untouched photographs of used glucose test strips in their natural habitat. Which is all over the place (does anyone else have this problem?)
Bathroom counter
kitchen breakfast table
Purse 1
Purse 2 (I guarantee if I went through every bag I own I would find at least one of these babies in there. Sometimes a  whole herd of them have migrated to the bottom.)
Kitchen floor
in my car

Desk at work
under the get the idea.
Obviously this is how they escape. I'm sloppy and always in a hurry and just stick  the used strips back in the pouch along with the tissue that should have been discarded 20 tests ago.  I know. It is gross. sorry.
Look, I don't expect perfection here. But hey Diabetes! Do you think you could cut me an f?!$ing break here?

Mr. Wonderful thinks I have a cold or something. Plus I've been trying to work out again. I think it's sore muscles plus hay fever. Does Diabetes know the difference? I think no. 

But it's a stressful time right now in our lives too. It's been hard to sleep this past week, and I have insomnia issues that don't need any assistance.  I dunno. It's not that my bGs are way out there today. Not in the "scary zone" - but they haven't dropped below about 150 all day today either. And a few days ago (maybe it was over a week ago) I had a full blown roller coaster ride (I plead guilty to rage bolus issues).  Normally I try to stay upbeat about all this crap and not take it personally. I learned a long time ago that it doesn't help. But I'm feeling a bit beaten down at the moment. I was hoping that writing a post about it with some humor thrown in would help.

Tomorrow will be better.

Saturday, May 26, 2012

Meditate? Me? Bwahahahahaha!

I was just now enjoying a moment.  I'm in the kitchen with a furry cat on my lap. I'm still in my bathrobe, but I've gotten a few things done. There is a clock ticking to my left. Everywhere I can see from this view is complete chaos. Every counter piled with papers and stuff and dirty dishes. Milk sitting out on the counter.

But there aren't any other humans in the house, no other noises, and I am just breathing (and now typing). And I realized that I feel really calm and peaceful. Just for a minute or two not thinking about anything. Or when I am thinking, only enjoying some nice thought at random.  Somehow, these moments are very rare for me. My massage therapist tells me I would be a perfect candidate for a practice in meditation. I don't know how to meditate, and the idea always strikes me as a little silly.

But if this is the endgame of meditation, maybe I should give it a try.

(WWHHHOOOOOSH!! Look out! Here comes the reality of my monkey brain back from her little break!)

Friday, May 18, 2012

It's just the way I am. And it isn't my fault.

Diabetes Blog Week continues.
Today's topic: "What They Should Know" - What is one thing you would tell someone that doesn't have diabetes about living with diabetes?

We can write more than one thing, which is good because the one thing I want to convey is really two things:
Diabetes isn't as bad as you think, but it's also probably harder than you think.  
Otherwise entitled "What you don't know about diabetics could fill a book..."
When I was first diagnosed 32 years ago, diabetes management was harder than it is now because we didn't have glucose monitoring, or insulin pumps, or carb counting.  I wasn't good at eating the same thing at the same time in the same portions everyday. I had different exercise and activities day to day at different times. I had either yucky glucose gel or yucky chalk tablets that were in blister packs and disintegrated in a backpack.  I had to explain to coaches and teachers about my diabetes regularly, and I didn't like the extra "attention" that diabetes brought down on my head.  I was an adolescent, which is hard anyway - so you can imagine that testing my urine (and then later my blood) and being careful about food choices was challenging, and that I rebelliously refused to acknowledge the reality of diabetes.  I just plain didn't like it or want to talk about it with people.

I still hate that people assume they know what I can and can not eat - it drives me crazy.  Or now as an adult, many people assume I can't even have a glass of wine. And they judge you when you consume something they are so sure you shouldn't.  (They really do - don't deny it. Don't we all judge others for one reason or another?)
Well guess what?  I have the same choices as every. body. else.  And like everybody else, I have to deal with the consequences of my choices. For example, if I overeat, I can take more insulin to keep my blood sugar in target range - but if I do this often I gain weight, just like everybody else. It's gotten easier over time to try and be more "boring" with food choices because it is just simpler.  So I often will forego a piece of birthday cake at work because it's just more hassle than it's worth with extra insulin bolus and testing. Not worth it sometimes for even a pretty decent Costco birthday cake (they really do have tasty cakes, FYI).  But if it is some special treat, like gelato in Venice, I will definitely make the effort.  Having a pump and carb counting have gradually freed me from the confines that I didn't "comply" with in my younger years. I have much more freedom and my choices can be better managed now.  Achieving HbA1C lower than 7 is still quite an effort for me personally because I'm just not a very perfect diabetic. I have a busy full life, which causes stress and sometimes puts diabetes management second or third in a queue of demands. I travel frequently for work, and routines are impossible to maintain on business trips. I respond too well to insulin sometimes, and my digestive inconsistencies muck up the rate that sugar hits my blood from my belly.  I am "brittle" - a term I used to loathe because I felt like it was some sort of moral or personal failing to be a brittle diabetic.

It's just the way I am. And it isn't my fault.  

(this is my  basic current set-up. I also find it irritating (literally) to have these gadgets attached to me 24 /7. I do usually hide my pump in my boobage somewhere though) A=pump B= tubing and infusion set, C= CGM sensor, D=CGM transmitter. They talk to each other, and my meter also talks to the pump to calibrate the continuous glucose monitor (CGM))
On the flip-side, diabetes management was also easier in a way in early 1980 because there weren't very many tools to use - so management wasn't a second full-time job the way it sometimes feels now. I had all these emotions about it all the time to compensate for the lack of control - fear, anger ( a lot of anger), frustration. But the mechanics of diabetes were pretty basic - take these 2 shots of insulin at these times every day, pee in a cup and test your urine 4 times a day and record the result in a 3-ring binder, . And here is your exchange diet plan and list of foods.
No sweets, set number of bread/starch exchanges, protein exchanges, etc.  "Free foods" were a big deal and they were as follows: 1) sugar free jello, 2) beef or chicken broth, and 3) diet soda (Tab or Fresca only). My folks weren't big on us drinking soda so I didn't have that a lot. I think they started buying it more to be nice to me - but it didn't taste like much of a "treat" with the saccharine aftertaste anyway.  Cookies? You may have vanilla wafers, graham crackers, or gingersnaps and only 2 (maybe it was 4 vanilla wafers...) for a starch exchange.

Simple as it was, I much prefer the complicated management routine I have today. I like to bake cookies and pie for my friends and family, I like my complicated mom-scientist-traveler-athletic-craftsy-stressful life. No, correction please. I love my life. I am blessed and lucky.

The hardest thing about diabetes and having other autoimmune issues for me gets harder as I grow older.  The impact that my health has on everyone around me mainly. I struggle with depression (common in diabetics and little wonder IMHO), low blood sugar is disorienting for me and that scares people who see me as a strong, competent, decisive person suddenly unable to make a decision.  More and more as I grow older, friends and family know of people with diabetes who've suffered amputations, heart attacks, painful neuropathies, laser eye surgeries. Painful complications and/or death before it seemed like the right time.  Our D-lifespans are statistically shorter than "normal" people. I know for a fact that the people who love me and care about me worry about me, and that makes me unspeakably sad. I want people to be happier when they know me and think of me.  I want them to smile at my silliness, or idiosyncrasies, or just because they like being around me - not worried sick that my kidneys will fail, my stomach freak-outs will land me in a bad place (not all diabetes related, but gastroparesis is a big factor), or that a low blood sugar will send me into another bad place.  I've never passed out, or convulsed due to low bG - but I am way disoriented and blabbering when it happens. and pale and sweaty.  I'm sure it is almost as scary to see as it is to experience.

Despite all this, I want people to know that it is in fact much scarier for me - the one who can't think straight and is totally dependent on getting my glucose in and the people I might need to assist. The one who has to get constant check-ups and wonder every time if this is the time I'll have to take another drug, or get eye laser surgery, or start dialysis, or on and on and on.  Please don't get mad at me. I'm not doing this on purpose. I'm not a careless person who doesn't take care of herself.

It's just the way I am. And it isn't my fault.

I could probably fill a book with more on this topic, but I don't really want to.  I like dealing with diabetes with a sense of humor and living my life in the fullest way possible despite having diabetes.  And that's probably a better book.
But I need to give it more thought...

*Blue was negative for spilled sugar (over your renal threshold which varies from person to person), and there was a scale of color through the greens and yellows up to orange which was something like +5 high sugar.  I very seldom hit the blue after my first year (a "honeymoon" period where my body still made a little insulin).

Wednesday, May 16, 2012

One Thing to Improve...move along

One thing? I have to choose one thing to improve? one thing.

Diabetes Blog Week day 3 - On Thing to Improve - "Yesterday we gave ourselves and our loved ones a big pat on the back for one thing we are great at. Today let's look at the flipside. We probably all have one thing we could try to do better. Why not make today the day we start working on it. No judgments, no scolding, just sharing one small thing we can improve so the DOC can cheer us on!"

And all my loved ones and friends who aren't diabetic, you can still be part of the DOC (Diabetes Online Community) via me - cheer me on, dammit! And you can be in our cool D-club. (sorry to be a smart-ass, but picking just one of the myriad things I'd like to improve is really difficult).

What I really really need to improve is making time for exercise. I used to be really good at this, carving time out of lunch hours, quick after-work jogs, even early morning jogs or yoga.  I used to really include exercise as just a part of my life that was a given.  Somewhere in the past few years, we had a second child, and my job responsibilities and travel went up. And "poof!" like mysterious magic I found myself plumper, lumpier, and with more volatile blood sugars.


Lately, I have started going to a yoga class once per week (when I'm in town). I have the option of 2 other exercise classes per week (went I'm at the office) on Mondays and Fridays too. but I haven't really committed.  And the expensive gym membership that has bee under-used for over a year now? yeah. like I said...underused.

So what should I choose? Obviously exercise is on my brain so I think something physical.  What gives me the most well-being feeling for the buck? yoga. What gives me the most feeling that I've created a few muscle fibers? A good strength/weights workout. What gives me the feeling I'm breathing hard and will be burning calories and bG for another couple of hours? Something really aerobic like running (meh.), eliptical trainer (eh), or Zumba! (okay, fun). Walking will count for me in a pinch, like when I'm traveling - if I can get an hour or two of "casual" walking, relatively brisk, around a city, I'll let myself off the exercise hook.  Otherwise, my goal is to exercise at least something like that or a yoga session (not always vigorous or aerobic), but preferably with 2 resistance workouts, and 2 high intensity aerobic workouts minimum per week.  The most recent studies say that women my age need to exercise moderately to vigorously for 60 minutes every single day to maintain our muscle mass.  I don't think I can commit to that right now, but 20-30 minutes minimum on the days I can't find any time would be an achievement at this point.

Let's see... My schedule could look like this:

Sunday - Gym for strength and/or aerobic workout depending on week plan, or Yoga session
Monday - bootcamp like class at work (or you'd better pick a suitable alternative, wimp!)
Tuesday - minimum 30 minutes run/walk (gotta start again somewhere
Wednesday - Yoga class
Thursday - gym for some resistance/ weights
Friday - bootcamp like class at work (or you'd better pick a suitable alternative, wimp!)
Saturday - Zumba! with Wii

Well, it's Wednesday night here in Basel Switzerland, and I can tell you that I did Zumba and Yoga last week, Sunday, Monday, Tuesday, Wednesday - each day I did some city walking (30-60 minutes), so I'm letting myself off the hook. But I should have squished in a gym visit in the morning (oh, well it's already 2:30 in the morning now!). No. I'm not going to do that because sleep is something I also need.

I will do something tomorrow, preferably yoga or somatics, then Friday I can go to the gym and/or do Zumba.

On the weekends, we are full of excuses because the whole family life thing is pretty full without a need for padding with exercise. But that is of course the completely wrong way to look at it.  Today I realized we haven't done any family bike riding for awhile. Maybe it's time to bring those to the outdor parking spot for the summer!

(move along)