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Location: Minneapolis, Minnesota, United States

Diagnosed with Type 1 diabetes in April of 1980. I recognize the incredible mental struggle of living with diabetes. I hope to share my struggles, my successes, and everything in between.

Wednesday, April 12, 2006

It's a double edged sword

Being charged with managing diabetes is a double edged sword.

On one hand it's very fortunate that we are able to take measures into our own hands rather than being completely at the mercy of a doctor or clinic.

But on the other hand, that's a lot of responsibility to deal with. And what if I don't feel like taking care of diabetes in addition to the "regular people" stuff that is always going on. You know, raising kids, paying bills, working to pay bills, dealing with the little daily emergencies that pop up, etc.

It sometimes seems like a lot to be working on. Overwhelming. Intimidating. Frustrating.

And with it being up to you - who is to blame when things go wrong? Yep, you got it. At least that's what the perception is. Self perceived or otherwise.

Don't you ever just want to not be in charge? To take a break from all the responsibility? I know I do.

There are days that I feel very fortunate that I (am supposed to) have the ability to "control" or "manage" my diabetes. There are days where it is easier than others, and there are days where nothing is working right, despite my best efforts.

There are also days where I just don't give a shit. Where I'm just downright tired of it all, and do just enough to avoid a disaster - but even that seems like more than what I want to do.

But who is to blame when those "screw it" days inflict some lasting damage? Myself. You can't cheat mother nature, no matter how much you want to stick your head in the sand and wish it all away.

Coming to terms with things is a big task. Figuring out how to keep marching on through the frustrations, inconveniences and obstacles that get in your way. How to manage it all without getting burned out or wore down.

When even doing things that are good for us, like exercise, wreak havoc on our blood sugars.

I don't have the answers yet, and this month marks 26 years of (not?) dealing with it. Will I ever figure it out? Can it be "figured out"? This makes me think of the discussion around Sandra's post that brought up "mastering diabetes", and the great discussion on the same topic over at Caro's "Diabetes Wise" site. I really got a lot out of both posts and the great discussions that ensued. I think the consensus was that diabetes can't ever be completely "figured out" or "mastered", but the key is to find that balance where you are doing the best you can without having diabetes completely control your life. The place where you are happy.

And maybe that is why it sometimes frustrates me so much - because you can't just get it handled or figured out once and for all, then cross it off your "to do" list like a weekly chore or project. It keeps demanding attention. All the time.

Will I find that balance that seems so elusive? Who knows. But I know I have to at least keep looking - keep working towards that balance. I may not ever get to where I want to be, but every step closer to it, is a step in the right direction.

I also want to acknowledge that it was a year ago today that my mom passed. I celebrated my 31st birthday yesterday and this month also marks 26 years of diabetes. I was an emotional wreck yesterday, and my birthday was tough to deal with. But I also know that my mom would want me to have a happy day, and that is why she fought to hang on until the day had officially passed.

I called my dad to talk with him and it made me feel better. I wanted to share with him how much I love him and how much I appreciate him being who he is and the positive influence he has had on my life. When I tried to talk about it I got all choked up and couldn't spit it out right. And when I got some of it out we both got all choked up.

I know he reads this so - "Dad - I love you very much, and I appreciate everything you have done for Laurie and I, and the sacrifices you and mom made for us. You have had a very positive influence on me. I feel that you and mom did (and continue to do) a very excellent job raising the two of us. We are as proud of you and mom as you are of us. You and mom did such a good job of helping me learn to be responsible of my diabetes, making sure I never felt limited in life due to it, and helping me to develop a positive outlook. It continues to make a difference to me. Thank you."

I could have never gotten all that out without breaking down a bit. I know it's not the same as saying it in person, but I hope it's enough for now.

8 Comments:

Blogger Sarah said...

My condolences for you mom.


I've had plenty of days where I just want to hand over this whole D thing for someone else to control. I think the worst for me was when I was in the hospital after having DD, and while I WANTED it, being responsible for my D, while learning all about this new creature was WAY too much.

I also ended up rebelling against the tight control (read: anal control) I created during my pregnancy and it took me the better part of a year to actually test more then once a day (yikes!)again.

No idea, where I'm going with this, so I guess I'll end now :)

9:34 AM  
Blogger Shannon said...

I'm taking notes here....

Seeing how you thanked your dad and how you're coping with diabetes gives me insight to what approach I should continue to take with my son's management.

This is why I love the D OC.

12:08 PM  
Anonymous Carol said...

Scott, what an emotional rollercoaster the last couple of days (and the last year) must have been for you. So sorry your mom's not physically with you anymore, but I can tell she is with you in so many other ways.

Giving up control of my diabetes management to someone else is NOT appealing. I guess I have "trust issues", and for good reason since I essentially diagnosed myself after my doc missed a clearly abnormal fasting glucose result of 380.

I know what you mean about "good for you" activities compromising glucose control. Woke up yesterday at 125, went to the gym for a weighlifting class before work and wound up at 280 after class. I had cut my basal in half for an hour and ate 4 wheat thins before class w/out bolusing for fear of going low. Yes, I know that weightlifting tends to increase BG while cardio lowers it, but I just can't seem to get the fear of the low out of my system when I'm in a class setting where it's harder to stop treat, wait, etc.

Geez, if I keep blathering on, I'm going to have to start my own blog rather than hijacking yours!

You're not alone in your frustrations, but this thing is a marathon, not a sprint. We will never control it perfectly, and that sucks, but WE really don't control anything else perfectly either. That is a commonly held illusion!

12:25 PM  
Blogger J said...

AMEN! First sending you a HUGE HUG to you and warm thoughts.
What you wrote about D is so how I feel and just don't know how to get it out. I was thinking of this the other day my cousin got breast cancer at 31 yrs of age and had to have both her breast removed and go thru a terrible ordeal of surgerys, This woman still exercised everyday even with the pain she went thru and I remember thinking selfishly why can't I be that strong? wow look at what she went thru and came out the other side and kept going... What I came to think is she had to deal with this ordeal for the past 2 years not that this takes away ANYTHING that she has be thru, but looking back I remember my first 2 years and even the first 10 years I was strong and able to deal with stuff that came up it was when I hit my 20th year and my eyes started to have complications that I suddenly was like SCREW THIS all this work and my biggest fear came true... I then had a "screw it " moment for 4 years I did not test I did not care but in the end I really do care. Scoot you hit it on the head saying how we just have to find a way to balance and take care of the D as best we can with out giving up .. where that balance is I do not know either but I do know that it is not a matter of being strong I mean we get up everyday, shower dress, do all the "normal" stuff PLUS remember our meters remember a bottle of insulin incase our pump runs out remember to eat breakfast remember to etc etc .. so we are STRONGER than we think , Weak times will happen the 3 WAMS of Your Mom passing,Your D survior birthday, and you Birth Day wow ! I commend you for getting up doing what you need to do and talking about it. How much strength you have given me just by this post THANK YOU ! I am sorry for the long ramble but it was something I wanted you to know.

12:45 PM  
Blogger melissa said...

There have been many times when I have wished that I had a disease that was not something I could control Then it wouldn't be my fault. Then I start to feel guilty knowing that there are millions of people that have diseases that they cannot control that wish there was something, anything they could do to control of at the very least tame their disease. I want someone else to take care of diabetes for me, yet I want the freedom of being in control.

I am right there with you in searching for that elusive balance. We'll get there someday.

I also wanted to let you know what an awesome post this was & that you are stronger than you think.

1:57 PM  
Blogger Vivian said...

Scott, That was beautiful what you said to your dad. I love hearing that from a guy as much as I love how honest you are about your feelings on D. Is there any particular memory or thing your parents did that was like an aha moment for you and your D? Is there something that your mom offered that you can share with the rest of us mom's? Your parents sure did something right, you are a great guy and your "screw it days" are human nature. You have those times but yet you are still trying to figure it all out and continue on. That is what I want for my son, that even if(when) he has those times in his life, I want to know he will still move forward and not give up. I would be honored if you could share moments of your parents with all of us. Hang in there, you definitely have a cheering section.

2:01 PM  
Blogger Scott K. Johnson said...

Thanks everyone. I really appreciate all of the warm thoughts.

vivian -- I'll give it some thought and see if I can put something together in the near future.

9:00 AM  
Blogger Nicole P said...

Scott -- As usual, I'm late...

I just wanted to tell you that this post touched a real chord with me - and thank you for reminding me I'm not in this alone.

12:51 PM  

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