~ knowing what I didn’t want to know ~

October 20, 2009 at 4:55 pm (Scripture, diabetes, parenting) (, , , )

Be strong and courageous.  Do not be terrified, do not be discouraged.  For the Lord your God will be with you wherever you go.

Be strong and courageous.  Do not be terrified, do not be discouraged.  For the Lord your God will be with you wherever you go.

How ironic that this verse was my kids’ memory verse for church last weekend and we repeated it over and over on the way to church (yes, we are procrastinators!). 

The following day, I got a call from the TrialNet coordinator and I learned some info that earlier in the month I had been wondering, Do I Really Want to Know?  I had ended that post with the same verse – Joshua 1:9.  It IS ironic.  But it’s not a coincidence.

Jesus assured us in Matthew that the Holy Spirit would be with us, reminding us of all God has said to us.  (John 14:26  “But the Counselor, the Holy Spirit, whom the Father will send in my name, will teach you all things and will remind you of everything I have said to you.”)
The Holy Spirit has obviously been whispering to me!

What I found out is that my oldest child has elevated levels of one of the three autoantibodies that is tested in Phase 1 of TrialNet – these autoantibodies are used as a screening test for increased risk of Type 1 diabetes.  I have done much reading since then, and as far as I can tell, this translates into her having about a 15% chance of getting diabetes in her lifetime.  (To give you some perspective, a child with no family history of diabetes and no elevated autoantibodies has a 0.2% chance of getting diabetes.)

Honestly I have had a difficult time dealing with this news.  And in a way that surprised me.  I have had diabetes for 26 years.  I knew when I had children that they would have a higher risk.  But this news just made it real to me.

I keep telling myself that things could be worse.  People can live active, healthy lives with diabetes.  This is not a death sentence.  However, I also know the day-in and day-out struggles of living with this disease.  The way the word “complications” and all that it entails is a stark reality that never leaves the back of my mind.  The fact that people with diabetes have a shorter lifespan.  These things are what makes this hard for me.

So what does this mean for us in the short term?  Well, it means another blood draw to confirm the results, probably within the next week or two.  Then if the results are confirmed, she will be included in Phase 2 of the study.  Phase 2 is additional testing (including genetic testing) that will give us a more exact risk of her being diagnosed with diabetes within the next 5 years.

Wouldn’t you know it – she was the only one of the three kids that had trouble with her first blood draw.  It definitely didn’t go well for her.  Blood draws don’t phase me in the least, but she’s not me.  They had to stick her twice and they even had trouble getting enough blood.  It was traumatic.  Would you please pray that the next goes smoothly and for her peace of mind during the testing?

I would also ask you to pray for me as I continue to deal with this news.  Pray that God’s words become my true reality…

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learning new patterns…

March 19, 2009 at 10:14 pm (Attitude, Scripture, diabetes, parenting) (, )

I’ll admit that I’ve been seeing a counselor over the past few months.  Life felt overwhelming, and I needed to talk about it.

If you’re a regular reader of my blog, you might remember me saying in this post how I probably should have seen a counselor as a teenager about having diabetes.  Now I’m sure of it.  I’m amazed at some of the things that came out during counseling with regard to having a chronic disease – here now 25 years after being diagnosed.

One of the things we talked about was the fact that when it comes to dealing with my diabetes, if I don’t do the right thing (take my insulin, check my blood sugar levels, eat (mostly) right, get regular physicals) I would die.  The more things I do right, the longer I live.  There’s a direct relationship there.  Wrong actions = death.  Right actions = life.

I’ve realized that I’ve applied this thinking to just about everything in my life.  My counselor says I’m an “awfulist”.  In other words my thinking pattern is that if I don’t do everything right, then the most awful outcome I can think of will happen.

I now recognize that I’ve subconsciously been thinking about my parenting like this.  Let me give you some examples…

If I blow up at my kids… they’ll end up as adults with serious anger problems and feel like I never loved them.  (They’ll also hate me and we won’t have any kind of relationship.)

If I’m not consistent with doing devotions with my kids… they’ll end up rejecting Jesus.

If I don’t keep the house clean… they’ll end up being slobs forever.  :-)

If my kids see me sin… they’ll think it’s ok and start down a wrong path.

All this over-analyzing, the super-high expectations I have of myself, the resulting guilt, and the fear of the future outcomes is exhausting.  It’s also self-defeating.  It makes me feel overwhelmed.  And it makes me feel hopeless… because no matter how hard I try, I can’t be a perfect parent.

But I’m starting to see it’s all not true.  My mind might automatically follow these patterns because of a diagnosis and because of my history… but it doesn’t mean it should.  I’m leaving no room for God’s grace in my life.  I’m not really in control of the future – He is.  I am responsible to follow Him to the best of my ability, and ask for His forgiveness when I fail. 

So I’m not sure how to change my thinking patterns.  But I think just realizing that it’s happening is a start.  Beyond that, I am seeking God’s help and his grace.  And I’m seeking to trust Him for the future.

Romans 12:2  “Do not conform any longer to the pattern of this world, but be transformed by the renewing of your mind. Then you will be able to test and approve what God’s will is—his good, pleasing and perfect will.”

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Attention Type 1 Diabetics : Need some feedback here!

November 21, 2008 at 11:04 am (Daily Struggles, Just life, diabetes) (, )

I am still amazed that my blog post about 25 years with diabetes was one of my most-read posts.  But I think that there are a lot of diabetics out there that are looking for feedback, encouragement, and information from someone other than their doctors, nutritionists, or diabetes educators.  Someone who actually HAS diabetes.  I know I am!

So today I’m looking for some feedback.  If you haven’t been here before, I am a type 1 diabetic (diagnosed 25 years ago at age 10).  I use an insulin pump.  I have three children, ages 7, 5, and 1.  I have a busy life.

My last HBA1C reading was higher than it has been in probably 8 years.  I faithfully check my BG (4-5 times/day).  But I don’t spend much more time on it – I feel like I don’t have the time to analyze my BG readings adequately, and then make changes and analyze the effect of those changes.  Lately I’ve been using the Minimed online software to do this, but I’ve only been doing it about once every 6 months (before an endo appt.).  I know, it’s not enough.  I’m curious about how others manage this.  So would you share with me the answers to the following:

  1. Do you use some type of software to analyze trends, etc.?
  2. How often do you actually take a look at your trends, analyze them (i.e., decide if basal rates or carb ratios need to be adjusted), and then make the appropriate changes?
  3. If you make changes, do you go back and analyze the affect of those changes?
  4. Do you do most of this on your own or on the advice of your doctor?

Thanks for your help, fellow diabetics!  I appreciate it!

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25 years with diabetes: A Kaleidoscope of Memories

June 2, 2008 at 9:13 am (Daily Struggles) (, )

This year will be the 25th anniversary of my being diagnosed with diabetes.  As I was thinking about that, and being thankful that I live now, when 25 or even 50 years with this disease is actually a possibility, I realized this disease has had a huge part in shaping the person I am now. 

My father was diagnosed with type 1 diabetes the year I was born.  So when I was diagnosed, at the very least I had some idea what it meant.  But all this to say that diabetes was a part of my life even before my diagnosis.  I feel like sharing some of my memories with you today.  A lot of them are so vivid, I can even remember the details of the room I was in.  This is kind of cathartic for me to write out and may be a bit long.  I won’t be offended if you skim!  :-)

Here they are…

  • Sitting in the doctor’s office at age 10 – seeing my mom cry.  I felt scared and even a little bit guilty for being the reason she was crying.  Funny thing is, I don’t remember crying myself.
  • Before my diagnosis, I think I was maybe 7 years old, and being with my dad.  He had a side job painting and wallpapering, and I happened to be with him one evening.  On our way home, his blood sugar was going low.  He must not have had any money with him because he didn’t stop for food.  I remember actually wondering if I might have to learn how to drive in order to get us both home.
  • Going weekly to the doctor’s office before school in order to get a fasting blood test.  Yes, this was before the days of home glucose testing.  The nurse would poke my finger and collect it in a capillary tube.  After getting the test done, and before I went to school, Dad would take me out for breakfast.  I didn’t like the doctor’s office, but I loved going to breakfast with Dad.
  • The following Easter after I was diagnosed, I actually found the golden egg at the Easter egg hunt at the VFW down the street from our house.  I had been going to this egg hunt ever since I could remember, but never got the golden egg.  I won the biggest chocolate bunny I’d ever seen – and my sisters got to eat it.
  • Practicing injections in our bathroom using an orange.  Crying the first time I had to give myself a shot.
  • My older sister being home with me on one of those early days when I had to give myself an injection.  I think I was giving her a hard time about it.  We were both crying.  She told me that she wished that she could have the disease so I wouldn’t have to have it.  I loved her so much for telling me that.
  • My parents trying their best to encourage me, but I could tell it was hard for them, especially my mom.  She wanted to give me what I wanted (read:  candy, snacks, etc.) and it was hard for her to say no.  A lot of times she’d give in.  Now as a mom, I can imagine giving in sparked all sorts of guilt in her! 
  • My Dad’s repeated stints in the hospital due to his diabetes.  I think it began about when I was in 6th grade, he went in at least once a year if not more.  Amputation after amputation.  I remember a chronic state of being worried about him.
  • My own appointments with endocrinologist after endocrinologist.  I went to the top pediatric endocrinologist in Rochester at the time… and I hated him.  He basically told me I was going to die from this disease (looking back as an adult, he may have been telling me the truth, but it wasn’t the way to get a child motivated).  He used scare tactics and I rebelled. 
  • For many years I rebelled – I didn’t test my blood glucose unless I was forced to.  At a minimum, I did take my insulin.  Probably because I was afraid of dying.  Sometimes before a doctor’s appointment I would actually make up glucose readings or lie about high ones.  Who did I think I was kidding??  I recall an HBA1C test of 13.9 (normal is 6.0), after which the doctor told my parents I needed counseling.  I refused.
  • Telling my mom one time that I was going to die from diabetes anyways, if I didn’t take care of it, I’d just die sooner.  (Note to my 34 year-old self:  I obviously needed counseling… I’m not sure why my parents didn’t force me.  If I am in a similar situation with one of my kids someday – drag that child in!)
  • Having two very scary insulin reactions during my college years.  One was after a volleyball practice at Clarkson- it was probably a two minute walk from the gym to the dining hall.  I didn’t even feel like my blood sugar was low before I left the gym, but I very nearly didn’t make it to the dining hall.  Thank God my now husband was meeting me for dinner – he took care of me when I got there.  The second was even scarier - it was after a class at U of M - I knew I was low, but also knew my lunch was in my locker and when I got it, I’d be fine.  Problem was, when I got to my locker I couldn’t see the numbers on the lock in order to open it.  I actually had to ask a stranger to unlock it for me so I could get food out of it.  In neither case was I regularly checking my blood glucose, so of course I didn’t have a meter anywhere near me.
  • While getting my master’s degree, I remember a very specific phone conversation with my Dad.  He was telling me that his kidneys were failing and that he’d have to go on dialysis.  He was very depressed and I could tell.  He told me that people on dialysis don’t live very long – 5 – 10 years he’d heard.  I didn’t know if that was true… but it made us both cry.
  • Finally realizing at about age 26 that if I wanted to see my (future) kids get married, I’d better get serious about managing this disease.  I found a fabulous doctor who doesn’t accuse, doesn’t try to manipulate by showing disappointment… just takes me as I am (and takes my blood sugar levels as they are) and works with me to improve them.
  • Praying during my pregnancies (and still now) that my kids don’t develop this disease.  I’m doing my best these days to instill in them healthy eating habits so that if they do, they will already have a good start at controlling it.
  • I remember from an early on being concerned about dying early.  My father’s death at age 60 was a wake-up call.  Even now it makes me tear up thinking about it.  But the thought of my kids’ future spurs me on to better control of my health.  I want to see them grown, with families of their own. 

Diabetes is MY way of life.  All these experiences and memories have made me who I am.  This wasn’t meant to depress any of you, but just maybe to help you understand.  It’s probable that each and every one of you reading this blog know a diabetic (besides me!).  Maybe this will help you understand them as well.

At this point in my life I can look back and see that having this disease has made me stronger emotionally, more disciplined than I might have been, and more compassionate with others who have chronic illnesses.  God is in control and I know “…that in all things God works for the good of those who love him, who have been called according to His purpose.”  (Romans 8:28 )

Thanks for sticking with me through my trip down memory lane!

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