An injury, some pain and a new respect for adults with Type 1

How does an adult with type 1 made those appointments not feel like this?

It all started the last Monday of January. It was just past 6 p.m. and I was walking through my gym locker room, on my way to my super-crazy, over-the-top ridiculously-hard two and a half hour spin class. I was wearing my brand spanking new bike shoes and chatting with a friend.

It hit me like a lightning bolt: something shot down my back, knocked the wind of out me and buckled my legs. Before I even could think, I was on the ground in over-the-top pain.

It was my back. I’ve never had a back problem before; I have no idea why it hit me then.

But since then, I’ve been under constant doctor’s orders, at physical therapy, at the doctors, almost all the time in pain. It’s getting better, finally (thank God), but thinking back on the past month made me realize something:

I’m a much better medical advocate for others than I am for myself. And I have no clue how to channel my own inner “D-Mom” to do battle for me.

In the past month I’ve walked out of doctor’s offices not feeling satisfied. I’ve bitten my tongue when I knew I should have been demanding something more. Dagnabbit, I even cried – cried – in a jerky doctor’s office. I settled when I shouldn’t have. I didn’t fight one bit for what I knew deep down I needed.

I told my daughter with diabetes about it and she said, “Mom. If I were me in there, you’d never act like that. You’d be tough, smart and demanding in a nice way. Just pretend like it’s for me.”

Which made me realize: It has to be so darn hard for all the adults with Type 1 Diabetes I know to constantly advocate for themselves. It never dawned on me before that a huge part of helping your child become an adult has to be helping them know how to deal with doctors, nurses, and medical situations they might not agree with.

But how do you get a person to stick up for himself or herself as much as they would for a child or another loved one? It’s kind of human nature: we all will jump to action for anyone we care about at a moment’s notice, right? But ourselves? That’s different. I know in my mind in medical situations, all kinds of silly things go on.

Like: Maybe I just need to buck up. And: Maybe I just don’t try hard enough to keep myself healthy. I can only imagine what goes on in the head of an adult with Type 1 when they see their endo, nurse or any other medical person. Type 1 carries so much weird stuff with it. We blame ourselves if a1c’s are higher. We beat ourselves up if we are less that perfect. We toss and turn and stress over it. And then adults with Type 1 are supposed to go into a doctor’s office and be brave, strong and smart?

Man, that sounds nearly impossible to me.

So this month of pain has opened my eyes to a whole new level of strong I’d never thought of before. Ironically, as I was thinking this through last night, an adult type 1 blogger tweeted about how stressed he was over his endo appointment the next day. So not fair, I thought. And please, I wished, let him tap his inner “D-Mom” and stand up for himself and come out of that appointment with the information, support and just plain help he needs.

I know in time my daughter will have to do this on her own for the most part. We are already at the point that I just drive to the appointments with her and wait outside. Some day, down the road, it will be her challenge to make all those appointments work for her, and to not every walk out crying because she felt put down upon.

So, adults, how do you do it? Share your secrets. We D-Mom’s want you all to succeed. How do you make your medical appointments work well?

3 thoughts on “An injury, some pain and a new respect for adults with Type 1

  1. Wow Moira, thank you so much for thinking of me.

    So sorry to hear that your back has been hurting – that is terrible, awful, miserable pain. Ugh.

    Isn’t it interesting how you can be so strong for your child, then settle for mediocre for yourself? I’m totally guilty of it myself!

    It’s almost as if you are shell-shocked while at the appointment, then the dust settles all day long as you think about that short piece of time spent talking with the doctor. There is a “fallout”, if you will, that sometimes seems to take a while to sink in.

  2. Moira–I constantly try to envision Jackson (10 now!) navigating these appointments on his own. Moms & Dads w/T1, how to deal with the emergency-room generalist who’s never seen an insulin pump? The nurse who insists you run high during a bout w a GI bug because they’re afraid to correct? let’s hear from you!

  3. Moira glad you are getting better and Lauren gave you excellent advice about how to handle a Dr. as if it is for your own child.:)

    Phil has been calling and making his own D appointment once a year since he turned 18.He knows his schedule better than I do. Thankfully he does see the primary once a year as well, a HMO demand, and he gets his eyes dilated at his eye appointment.

    Recently has decreased his basals a bit and has been biking in this fantastic March weather.
    He also showed me that he downloaded this AP which gives an estimated HA1c based on blood sugars:

    OnTrack is an application to help diabetics manage their diabetes by tracking various items such as blood glucose, food, medication, blood pressure (BP), pulse, exercise and weight.

    http://www.appbrain.com/app/ontrack-diabetes/com.gexperts.ontrack

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