Welcome

This blog is my record of my journey with my son who had a rare, and eventually fatal metabolic illness. It is the story of the last year and a half of his life, his death, and after. I have shared this journey this in the hopes that is will not only help me come to terms with the realities, but also that someone along the way may find it helpful, as they face a similar journey.







This is my place to comment on events, blow off steam, encourage myself (and maybe you), share frustrations, show my love, grieve my losses, express my hopes, and if I am lucky, maybe figure out some of this crazy place we call life on earth.





The content might sometimes get a little heavy. As an understatement..







WARNING:







People who are grieving may write sad or difficult things and bring you down. This blog may not be for the faint of stomach or of heart. Read with caution and at your own risk.





If you are new to this blog, I suggest reading it from oldest to newest. It isn't necessary, as what I write is complete in itself. But this blog is sort of the result of the "journey" I'm going on, and I think it sort of "flows" better from oldest to newest.



I do hope that in the end you will find, in spite of all the difficult and heartbreaking things, things that are worth contemplating.





Welcome along!





Tuesday, February 12, 2013

Finger poky things

Soooooo....

I did my glucose tolerance test about two weeks ago (not the one hour test, the TWO hour one) and had another confirmation that just because your pregnancy is complicated by the possibility of a genetic disorder in your baby, you are not automatically exempted from other complications.

Not that I am complaining.  It could be worse.  It could be far, far worse.  But I tested positive for impaired glucose tolerance, though not for "actual" diabetes.  Which I thought was a big relief.

Until I got to the Dr. today and she told me they would still treat me exactly the same as if I had gestational diabetes.  Urg.  I know, I know, it's all a positive thing.  I get to learn how to eat more healthily and have more motivation to shake my massive belly instead of sitting on the couch and eating cinnamon buns.  (WHICH, I'd like to point out to my SISTER, I WAS NOT DOING ANYWAY.)  Well, maybe the sitting part, but not the cinnamon bun part.  At least, not that often.

Anyhoooo.... I found out today what testing positive for impaired glucose tolerance means.  It means 2-3 times a day I will be poking a finger and using a strip to test my blood sugar level, 1-2 hours after a meal.  At first that seemed like a big downer, but the tiny finger-poky thingy really didn't hurt very much.  Peanuts really, so I don't mind.  And I get this really cool blood sugar tester with these cool strips, and I get to take a couple of tests each day.  I think I am going to be able to pass most of my tests easily, and it's always fun to take a test you can pass, right?

DISCLAIMER:  I feel a great need to apologize to anyone reading this who has actual diabetes.  I realize that you are laughing at me and shaking your head, because your life is way more complicated and if you need insulin you know all about real needles, and not tiny finger-poky type things.  No comparison, I realize.  Now, be kind and humor me as I continue to be silly.

The real good news/bad news part was about my diet and maybe my exercise.  First, the bad news.  I get a whole new food chart.  And on THIS food chart, there is a highlighted section for carbohydrates.  A very large section, because from now until at least the end of my pregnancy, the milk group (excluding cottage cheese and hard cheese) is a carbohydrate.  Also, fruit are a carbohydrate.  Also, more than a cup of beans, peas, squash, etc, is a carbo.  My diet is suddenly FULL of carbs!  :)  And the trick is not to eat more than 3-4 servings at a time.

The good news is that I don't think I'll be changing that much of my diet, as when we looked over some of my "typical" meals, they didn't typically exceed the limit.  Whew.  But I will be adding a protein to my breakfast.  And "treats" will have to be relatively rare events.

And, the really scary part, the dietitian really, really wanted to take away.... MY PRUNE JUICE!  My palms got sweaty and my heart was beating faster.  No, seriously, it happened.  Because prune juice makes my life bearable.  Yes, I have tried upping my fiber.  No, it hasn't made a difference.  Which the dietitian admitted was likely because prune juice isn't about fiber, it had a mild natural laxative in it.  It also, sadly, contains a lot of natural sugar...

So, as a compromise, we are going to try me drinking two half glasses a day at strategic times and I am going to do my darnedest to make sure I still can pass that little test after drinking it.  Which means I am about to eat a tablespoon of peanut butter, drink a half cup of prune juice and walk for half an hour to pick up my son from school, in the hopes my blood sugar stays stable. 

So prune juice is my new dessert.  :)  YAAAAAY!  (that might be sarcastic). 

Everyone seems fairly confident that once baby comes, I won't need to keep being treat for diabetes. 

But the doctor did try and get me to say yes to a study for a support group.  I said I'd think about it, which she correctly read as "No way, Jose."  I know she understood my subliminal, because she proceeded to tell me the good things about being in this study, and having support meetings to lose weight after pregnancy, and doing group walks and stuff. 

I didn't get into it with her, we just left it at that.  But if Baby has PBD, then the only support I'm going to be interested in for that first year will be respite, and someone to watch Baby to let me get any sleep at all, and if Baby is tube fed I'm not going to be able to always toddle off to meetings and group walks and stuff.  I'll have enough meetings and appointments.

And if Baby is healthy, I'm going to be OK too.  When Joel hit two years, we finally had "hit our stride" and I was able to eat healthy, exercise more, and I lost 20 pounds which I kept off.  If it takes me a little longer to lose my pregnancy weight because my life is full of other craziness and I'm at a bit higher risk of type 2 diabetes, so be it.  I'll worry about that when it happens, because sufficient to the day is the evil therein.  So there!  :)

Oh, one last good piece of news:  despite everything else, my blood pressure is totally good!  Whooo hooo! 

2 comments:

  1. Oh Karen...I feel for you. I had Gestational Diabetes in my 2nd pregnancy. Beware of Peanut butter though...it really is not your freind as they add a lot of sugar. Get some mazzarella cheese sticks...those are great protien rich snacks that will fill you up and can be combined with a carb. I am happy to say that right after birth...I was fine...and because I followed all the rules....baby was fine too...no blood sugar issues at all.
    Funny that your Dr. is monitoring you...I had no choice but to go to a Diebetic monitoring program. If I didn't do it and didn't follow the program...they would turn me into Child Protective Services. Can you believe that? First...why would I NOT follow he program if it directly affected the health of my baby and WHAT THE HECK? Really? CPS? The nanny state grows and grows daily. But hey...I think you will be fine....It was a bit of a pain...but the monitored diet helped me not pack on too much weight so there was actually less to lose when baby was born. Good luck. OH...and my son was 2 at the time...and he LOVED doing my glucose testing for me. After just a couple weeks he could take the stick out of the box, put it in the monintor, prick my finger and then put the little stick on the blood to read it. He thought it was the coolest thing ever!!!

    Good luck...I'm so glad everything else is going along great.
    karaleen

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  2. Oh, Karaleen, that is insane! No, I could have refused to take the glucose tolerance test at all. I chose to take it. :) And I could have refused to be refered to the endocrinologist (which is the Dr. I saw yesterday). But as you said, why would I do that?

    Thankfully they are not making me do a monitoring program, but my follow up is next week and if my sugars have not been good this week, then I might need to see them more frequently. For now they feel confident that I won't need to see them too often. They seem to trust me to call em if a problem crops up.

    I intend to buy more cheese snacks, no fear. But don't worry about the peanut butter, the kind I have has only 1 gram of sugar per tablespoon, so as long as I don't go eating 5 tablespoons, I'm ok. I am careful to measure out only one tablespoon, so a tablespoon of pb has only the same amount of sugar as my turkey stick. The dietician ok'd it, and the chart says two tablespoons is ok for a protein. You are right, though, some pb has tons of sugar. I promise not to have more than 2 tablespoons a day! ;)

    Glad I'm not the only one who has had diabetes. Thanks for the well wishes!

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