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 19, 2013

Follow up.

I had my follow up appointment with the endocrinologist today.  How did that go?

OK, I guess, if you like follow up appointments.  I realized something today.  I realized that I don't really like doctors or appointments too much.  No matter how nice the doctor is, or if the appointment is very short.  Yeah.  I just don't really like them.  So maybe I am a bit hard to please that way.  I don't know.  My view of the whole medical system is of course, skewed by my experiences with Joel...

Anyhow, I realized I don't like doctor's appointments and I also realized that I am a bit of a rebel.  Yeah, that surprises me too.  Well, not a "cool" kind of rebel, like someone who is the first to dye their hair blue.  I really just mean I don't like people telling me what to do.  It's sort of a problem, actually.

It makes me very much like my son.  His biggest complaint about school is that his teacher is always making him do stuff.  And how, when she gives a "craft," he always has to do it the way SHE says.  I believe we adults would call that "following instructions."  My son doesn't like that.  He doesn't like someone telling him what to do.

The apple and the tree, you might say.  Because that is me too.  Anytime someone tells me what to do (without me asking them), it bugs me.  This little flag pops up, the mail is in!  Yeah, that is probably not a good thing.  So I struggle with maintaining a good attitude when someone comes along with advice and suggestions that are unsolicited.

OK, back to the doctor, and how it went.  I think she was happy enough with my sugars and that I had gotten the breakfast problem under control.  The good news is that I don't have to come back next week, the bad news is that I have to go back two weeks from now. 

Which means: two appointments last week, one this week, one next week (midwife), one the week after... you get the idea.  I'm so totally appointmented OUT!  And yes, in part that is a residual effect of life with Joel, but also I'll bet there are others who feel the same way about appointments very quickly.  I know, I know, I better suck this up, because if Baby is sick, there might be lots and lots of appointments.  Which is why I started trimming them down and saying no to some of those which where most obviously useless...

I guess she wants to see me in two weeks because as Baby and placenta grow, it places more demands on my insulin levels.  Still, I have the number to call if they go up and I can't control it.  I sure wish they'd just send me off on my way and then I can call them if I need them.  But no.  I must go in.

See, I understand those people who just refuse to go to doctors at all.  They have understood an important thing.  Once you go ONE time, they might FIND SOMETHING.  And if they do FIND SOMETHING, you will never, ever be free again.  You will have to keep returning and listening to them, time after time.   Ha ha ha.  (evil imaginary doctor laugh)

Anyhow, except for the part where I have to return in two weeks, and the part where she gave me suggestions for getting exercise (that was kinda like the part where the teacher tells you how to make the craft).  I know, I know, I should LOVE suggestions, but since I've been doing great at getting the exercise to keep down my sugars, and since I am a reasonably intelligent 42 year old who can figure out things like take a walk, chase my son around the house, or borrow a treadmill, yeah, let's face it.  I don't like being told what to do.  Unless I need to put together a piece of furniture.  Then I need instructions.

Silly of me to be peeved at that, at any rate.  Partly my bad human nature, and maybe partly just because I don't like appointments.  And maybe also partly because my BMI came up once again.  And I sort of hate BMI's and question a bit of their validity as it is.  And I was only between 5-10 pounds over normal for my BMI before I got pregnant, and that was partly because my body played a trick on me.

See, I thought that I was 5 foot 7&1/2 inches.  But somehow, over the last 10 years, I have lost an inch of height, but I didn't know.  So I thought my weight was better than it is, until this Christmas when my sister and I had a "whose the tallest" contest and I lost.  It was a little freaky.  I hope I don't have osteo.  Anyway, my BMI turned out to higher than I thought it was, because I turned out to be an inch shorter than I thought!

According to my endocrinologist, though, even 5 to 10 pounds overweight on your BMI is significant and lots of us out there are but we just don't realize it (HINT: that's YOU honey).

Does this all sound like grumbling?  Oh, I thought it might, because I think it might just actually BE grumbling.  But what woman likes to be told she is overweight, and that even though she lost 20 pounds the year her son died, it still wasn't good enough?  Well, not this woman, I can tell you that.

But, on the bright side.  I do have a sense of humour, I hope you could read that between the lines of my grumble session.  And one of the funny things about this diabetes thing, is that I have been praying, in the past year, that God would help me be a better homemaker.  Realizing that I might have some deficiencies.  And since being pregnant makes me feel sick, slow, huge, tired, etc., and then yet I got sick on top of that, my efforts at keeping a cleaner, nicer house were greatly sabotaged.  Which means I lack the will power to overcome these obstacles.

 So, God answered my prayer.  Now I find a great incentive to clean my house, at least two extra times a day.  I'm adding about an hour more cleaning to my daily schedule, just to keep down my after meals blood sugar.  No, to my Mother-In-Law, my house will still not be as clean as yours is.  I am pregnant, and I also have a six year old.  And I'm really not going to pull my fridge out at this late stage of pregnancy.  But I will suddenly have a much cleaner home, and my fridge is next on the slate for cleaning out, even though not under.

Which is to admit that all this diabetes stuff is not stuff I like or enjoy.  No, no.  But still, there is room here for lots of gratitude and for a change of attitude for the better.  We are working on the attitude.  Maybe if I go eat a chocolate, it will improve.  :)  (I'm so funny.)

Thanks for listening to my rant.  And Kara, thanks for sharing your comments.  So nice to hear that I am not alone in all this!  :)

1 comment:

  1. Oh my Karen.... I really do think you and I may be the same person sometimes. I wasn't even lucky enough to get the endocrinologist. I had to go to these Nurse practitioner/social worker/dietian types who apparently only dealt with idiots who had no idea what sugar was or how they even got pregnant. Seriously...it was rediculous the crap I had to do. They wanted me to meet with a counselor to talk about my "feelings" about having GD. Really? A temporary, non-life threatening condition that I was controlling just fine and understood the origin? My word! I pretty much told them I thought it was a complete waste of time and money for me to be there. Just tell me what to do...I will follow the program and get your damn nose out of my business. You don't need to know my "support" system at home, my level of stress...blah blah blah!!! Like you...I was in my 40s, educated and already had been pregnant and a mother. I knew what I needed to do for the health and safety of my baby....now get out of my face!!!! I was so very irritated. And they wanted me to go to a weekly appointment and weigh in in addition to my OB appointments. I refused. It was bad enough I had to track every meal and blood sugar level and fax it to them once a week. I totally refused to use their archaic methods...built my own spreadsheet with formulas to average out my days and meals and show any trends and would email to to the head dietition. They were all disturbed that I wouldn't give them this hand written chart that they then had to transfer into some database...Really?
    So...can you tell that the irritation (from 2 years ago) is still present? So yes...you have a sypathizer. I am totally on board with your current plight. Hang in there. This is temporary, this is temporary. That was my mantra....but I will warn you....after you have that baby and your restrictions are lifted...don't do what I did and eat anything with sugar in it that you can get your hands on....I kind of went over board just to be rebellious.....sooooo not worth it and sooo much harder to lose in your 40's than in your 30s.
    And ...BMI is a crock of crap if you ask me. The only time I was ever in my true BMI "healthy" range...I had to work out everyday for at least an hour, eat like a bird and deny myself way too much. I had bones sticking out and did not look "healthy"! They don't take into accounty your frame in those charts...they just go by height and weight and for this german/irish girl who was an athlete most her life with a lot of muscle mass....It never applied to me. I always looked and felt my best when I was about 10lbs over my "ideal" BMI. So there! Tell them to shut up about that!!!!
    Good luck at all those appointments. And yay for a cleaner house and lower blood sugars!!!!
    Hugs,

    Karaleen

    ReplyDelete