Life in LADA land

Living Philippians 1:6 with type 1.5 diabetes

Two years

It has now been two years that I have been dealing with LADA.  I can honestly say that my diagnosis changed my life.  For the better, and for the worse.  Two years ago I had never heard of LADA, or latent autoimmune diabetes in adults.  I still wish I never had.  But I have, and it’s mine for the rest of my life, so I deal with it. Hopefully, I’ll get better and better at it as time goes on.  Time to look back and see how I’m doing, and to look forward to what I hope will develop in the future.

Two years ago at my diagnosis my A1C was 11.7 and I felt pretty awful, despite having spent a month eating a diet as low in carbohydrates as I could stand.  I now understand why, and am amazed that I could even function considering that most of the time, my blood sugar was over 250. Now when it gets that high, I get very foggy and lethargic, so I can only imagine how bad I felt for months at that time.  I was also a bit in shock, as I dealt with the diagnosis of diabetes, and not just any garden variety type 2 diabetes that pretty much all other adults get, but my very own weird kind of diabetes, type 1.5.  Oh boy. My doc dealt with it aggressively, not letting me go months at a time experimenting with various ways of managing the disease, but seeing me about every 3 weeks, and making changes that improved things ever so slowly. Fast forward to six months later and another 9 months after that, and I had all the tools I have now, an insulin pump and a CGM that I am extremely thankful for, despite their seemingly constant need for attention. I feel so much better most of the time and have more energy now than I can remember having for a long time. I’ll chalk that up to having tighter control of my blood glucose and to exercising 5-6 times a week. Those early days seem like a long time ago, though in reality two years really isn’t such a long time.

What would I wish for as a diabetic? Well, obviously, getting rid of the disease would be my first choice. Since that isn’t on the table, we’ll move on. A cure would be nice. Ok, that’s not happening in the near future either (though I have become much more interested in what JDRF is doing and how I might help). So, for now, I look forward to the new version of my CGM which I’ll be getting in March. It has some nifty new features and will help me fine tune things even more than my current Dexcom. Beyond that, I look forward to a pump with an integrated CGM that actually responds to my blood sugar levels, especially by anticipating lows and shutting down the delivery of insulin. That’s not something I can look forward to in the next year or so, but perhaps in my lifetime…..

My biggest struggle? Lows. Always lows. They hit at the weirdest times. Lately it has been on Sunday mornings, which is just crazy since that is the opposite of what I had come to expect on Sundays. But I have had the worst and stickiest lows on Sunday mornings lately. One of the docs at church thinks I need a Holy Spirit basal program on my pump to deal with Sundays. Maybe he’s right. But how exactly would I program that? Leave it blank in the pump and just let the Holy Spirit plug in the numbers?

My greatest success? Making exercise a regular part of my life. This has had so many benefits and has brought me some interesting new friends as a bonus. I actually look forward to swimming or working out in the mornings, even on these cold winter mornings when it is still dark as I leave for the pool.

Two years. It doesn’t seem like much when I consider that for 54 years before that I lived without this disease. But diabetes has had a profound effect on my life, way out of proportion with the short amount of time I have had it. I’m sure I’m not alone in this and that others with chronic diseases share this weird time shift. But God gives grace that is more than adequate to cover even this. And so, in that grace, I’ll look forward to what the future holds.

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Several times in the past couple of weeks I have found myself swimming alone at Twin Towers.  Now  you would think that is a good thing, and for the most part, it is!  But I also find that it is actually a bit of a struggle to swim well when I’m the only one in the pool.  I need another person in the water to “push” me along, to keep me working at a pace that is harder than comfortable.  It doesn’t even have to be someone who swims faster than me (rare, when you swim at a retirement center’s fitness center!), just another person moving along in the lane next to me, or working out in the open area of the pool, or on the hydro-treadmill (yes, really, it’s a treadmill IN the water!). It takes a lot of motivation to work at more than a moderate level when I am  swimming alone, especially at the beginning of the workout.

And of course, this principle applies beyond swimming.  I would not be doing as well as I am at managing my diabetes without a lot of people pitching in and pushing me.  Family, friends, the greatest medical team around (thanks Betty and Dr. Hazen!), blogs, magazines – all of these things serve to push me to take care of myself and work through the lows, highs, inexplicable problems with infusion sites and Dexcom sensors, and just the everyday load of thinking like a pancreas.  Friends who ask how I am doing and really mean it – this is a powerful encouragement to me.  It might seem like I am blowing you off when you ask and I give a short answer, but just the fact that you ask is important to me.  I don’t want to bore you with the details.  Each day truly is a new experience, and I never know how it’s going to play out, if it’s going to be a lovely boring day with steady BGs and no huge spikes after meals or snacks, or if it’s going to be a day where the Alps are outlined on my Dexcom screen, so usually I give anyone who asks the shortest answer I can and still be honest.

This goes for life as a Christian too.  Though being alone to pray, and read Scripture and listen to the Lord are necessary to my growth as a believer, there truly are no Lone Ranger Christians.  We need each other, even when we don’t agree on everything.  I love my church, and the people in it.  They push me to know Scripture better, to live it out more fully, and they polish off the sharp edges when I need it.  I learn from the parents in my ministry, as they work diligently (but very humanly) to raise their children as faithful Jesus followers in a world often hostile to their choices. I learn from our Pastor, Elders, Trustees, Deacons as they teach us and lead us by example.   And the children I serve delight me, encourage me, and show me what it means to love Jesus every time I am with them.

So, alone is good.  Sometimes.  But I need y’all.  And that makes me very happy.

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Monday musings

A lot of little random things have been rolling around in my  head for days, and it seems like a bullet list might be a good way to release them and get on with life.

  • Exercise is much more pleasant when I start out with a BG of more than 140.  Otherwise after about 10 minutes I feel like a wet noodle and just want to curl up and lie down somewhere. That’s inconvenient when swimming.
  • The past two weeks have been remarkably honeymoon-like.  I do NOT take this for granted, as a stretch that long of relatively good BG numbers and no real crises is pretty wonderful. And it’s not like life has been quiet, by any means.  Maybe I’m getting the hang of this disease.
  • The best part of this recent honeymoon is that I remember what it is like to feel good and full of energy most of the time.  No lows have plagued me for long, and no sticky highs have put me into a fog for at least two weeks.  You’d be surprised how incredible that makes me feel.  It’s great motivation for continuing to work hard on managing this disease.
  • Listening to Kristyn and Keith Getty in my car soothes and invigorates me at the same time. It also gets my mind in the right place – centered on Christ and His incredible grace and mercy.   And the fact that the Gettys have just come out with a Christmas CD is an added bonus.
  • I really do like the children at my church that I have the privilege of working with.  I like their parents too, but Friday night I got the kids to myself while their parents went out on dates (or whatever parents do when someone else takes all their kids).  They are a delightful bunch, full of creativity and kindness and fun.  And our teenagers are amazing.
  • This week is unexpectedly unscheduled now that the ECC stomach bug has taken hold in so many families and we have cancelled all events involving children.  So far I am untouched by the flu, so I now have a week stretching out ahead with no teaching or organizational responsibilities.  Nice.  An early Christmas gift.
  • Now watch, the bug will hit me tonight.
  • Our Christmas tree is up and decorated, the lights are all up outside, most of my Christmas shopping is done, and I get to spend the next couple of weeks knitting like a mad woman.  These are all good things for which I am thankful.
  • Technology, especially diabetes related technology, is a wonderful thing. Most of the time.  It turns out that any little tug on my infusion site (e.g., when I drop the pump and it hangs by the tubing, or when the tubing gets caught on something like a doorknob (don’t laugh – it happens)) makes the site go bad.  This has happened a few times in the past couple of weeks.  My BG will go way up, and when I remember that somehow the site got pulled on, and remove it, there’s a little puddle of insulin just sitting there.  Usually, I can smell insulin before I remember that the site got tugged.  I really hate pulling out a site before I have to. What a waste of money……
  • An infusion site is where the tubing from my insulin pump meets my skin and lets the insulin be “injected” from the pump. It’s about the size of a quarter. And mine are pink. To match my pump.
  • Swimming a few laps after doing a work-out with the weights and machines feels amazing.
  • Lego makes sets from Lord of the Rings and the Hobbit!  Lego Gandalf is adorable. So is Frodo.

I think that’s about it for this Monday.  This has been fun (for me, anyway) so I’ll probably do it again.

Have a good, healthy week everyone. And for those of you with the ECC bug, I’m praying for you……

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