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Advanced Avoidance Technique.

I received the reminder call.  I discussed my schedule that week with my husband and didn't bring it up.  And the letter from their office still remains stuck to the calendar page.  (Not to mention, the missed appointment cost me $25, to boot.)  But I never made it to Joslin to have my eyes checked again.

And I don't want to go.

If it seems like I've had an eye dilation like every three months, it's because I have.  My eyes were dilated several times during my pregnancy to track the progression of my then-mild and now-moderate non-proliferative retinopathy, and this eyeball issue was the main reason I ended up delivering my bird via c-section.  (The pre-eclampsia didn't help matters much, either.  Yay for ... stuff?)  

I fully realize that what I need to do is pick up the phone, call the eye clinic, and make an appointment for a dilated eye exam.  I know this.  And later this afternoon, I will make that phone call. 

It's just sometimes I find all this crap really tedious.  Not so much the little things, like testing my blood sugar throughout the day, changing out the insulin pump ever few days, and popping that blood pressure pill every night before bed.  That stuff doesn't make me bonkers. 

It's more the Big Stuff.  The eye exams.  The endocrinologist appointments.  The hours spend combing through insurance EOBs and spending even more time discussing this paperwork and battling with insurance claim specialists who think 10 test strips a day is "excessive."  It's making log books and calling the mail order pharmacy.  It's moving the fax machine from the office into the living room (because we neglected to hook up the office phone jack) so that I can fax documents to our insurance company.  It's going online to the insurance website and jumping through all the search hoops to find a doctor within a 30 mile radius who takes both my insurance AND new patients.  Taking a whole day to trek up to Boston to sit with my endocrinologist for an hour; another day to have the dilation drops plunked in and to have to wrangle someone to drive me home afterward.  It's a day away from my baby.  And from the work I enjoy doing.  And a day that someone else has to either watch BSparl or drive me or whatever.  It's a day that makes me resent diabetes just enough.  And it makes me admittedly grumpy because I really don't want to spend the day doing crap I don't enjoy.

Every time I re-find this picture, it reminds me how far we've come with diabetes, but also how much HASN'T changed.
An image from an older post about guilt, but the words I chose are blunt,
and I think if I made this same list today, it would read the same.


(And before you say it, I know I could see someone closer to home, but it's hard to be so close, yet so far from the doctors I know and trust and who are best suited to care for any complications that may arise.  And before you say it, I know it's pointless to have access when I don't actually go to the appointment.  And before you say that you weren't thinking that, let's get some iced coffee and talk about Spring Training, instead.  And before you say you like the Yankees, I'll kindly refer you to my husband and my editorial assistant, who share your bad taste.) 

The time it takes to manage diabetes on a day-to-day basis isn't tremendous.  Constant, yes, but not overwhelming most of the time.  But taking time and sitting in the car and in waiting rooms and hoping they'll call my name first so I can let them stick a needle in my arm and then pay the garage attendant and then drive home for two hours?  (Sometimes with dilated eyes?)  It is so worth it for my health to make these appointments and stick with them.  But sometimes it feels like such a pain in the ass that I'd rather skip the appointment entirely and spend a few hours playing blocks with BSparl. 

And then I realize that in order to play blocks, or to travel for work, or to be able to make the bed and run the laundry and enjoy dinner out with my friends, I need to stay healthy. 

... sigh.  Fine.  I'll make the appointment.

Comments

Thank you.
Signed: Your Mother

i know EXACTLY what you mean! I just had yet another (every 3 months) dilated eye exam yesterday (no change, still mild non-proliferative, thankfully) and I go through all the same things and emotions you mention above...let's coordinate our appointments!

If it makes you feel any better, I live pretty close to Joslin and it STILL takes almost an hour to get there, so unless you lived next door, you're not missing much in terms of time savings...

Good luck with that appointment!

Great post Kerri. Totally, totally agree. I have very mild (2 spots in each eye) non-proliferative retinopathy and am due to go back for a 6 month follow up. I haven't made the call either.

Hugs, hugs, hugs.

I'm so worn out from D appointments that I literally have to be dragged kicking and screaming to see any other Dr. I don't think I've seen my PCP in 2 years? I've got a shoulder that is killing me, but I have NO desire to call and make an appt because I DON'T WANT ANOTHER THING WRONG with me. How pathetic is that?

I'm with you on this; however, mine is not avoidance on diabetes/doctor appointment stuff, but on job hunting... I have a job. It pays. It has great medical benefits (100% Durable medical and I have only had to appeal one claim in the last 5yrs). I hate it (and so do my blood sugars and stress levels)! I need to get started b/c in this economy, I hear it takes forever, but I don't think I will ever find something doing what I want to do with the benefits that I currently have...

YAY for spring training!!
:o)

and boo for having to be grownups and doing what we know we need to do.

Thanks for writing this post today! I feel like I spend all my time making appt, getting refills, arguing with insurance about why I need THAT quantity of a refill..This week, I had the endo appointment, along with an allergist appointment and pump training (YAY PING!!) and have to find time to get tested for Celiac while putting in my 40 hours. All while all I want to do is crawl under the covers and pretend it will all go away. So thanks for the timely post. I love at the end where you say that to do all the things you love (and would rather be doing) you need to be healthy. And that's why I do it, to continue the great life that I have!

It is such a drag, a bother, an annoyance, a downer...blah. I hear you and totally agree. I need to find a new eye dr. and make an appt. also, just haven't done it, know darn well that I need to do it. How about you do it, and I'll do it too? Also, if you have good drs. you know and trust, it makes complete sense to go to them and not want to change.

I do this all the time. But like you, I really need to follow through because more than just my well-being depends on my health. NO PRESSURE

Wow, your post today completely hit home. I'm in the middle of getting my son a pump, scheduling physicals, endo appointments, and pump training all the while fighting with the insurance company to cover more than 200 test strips a month and the rising cost of said strips because they decided to change the Tier in the middle of the year. I'm exhausted, overwhelmed, and I just want to ignore it and maybe it will go away...but I know it won't so I keep on pushing on. Thanks for a great post reminding me that I'm not the only one out there going through the same thing.

I hate dealing with insurance companies. They are the WORST. I think I have wasted years of my life on hold waiting for them to tell me I've been denied. AGAIN.

1. I really like your mom's comment
2. You made one typo, where you wrote "bad taste" you mean to write "excellent taste".
3. This is why doctors need to start and end appointments with positive things that you've done and have to look froward to. I love going to my endocrinologist and eye doctor because they always make me feel good even if they have bad news. I hate my dentist because she always tells me to stop chewing gum because it's ruining my jaw. [stepping off my soap box]

I have read this blog for a long time now - today is my frist comment. :) Almost one year ago, the day after my b'day (March 19th is my b'day) I bent over to try on a pair of shoes, stood up, and ruptured one of those lovely blood vessels in my eye. I had a huge spot in my vision. I'll never forget the first retinologist app't three days later when he said I wasn't going to go blind - he could fix this. I think I cried for two days - but he was right. It took three laser treatments, but almost a year later I still have 20/20 vision in both eyes (with contacts) and the spot is gone. The best is at the last app't, he told me I was good for a year.

I know it seems horrbile having one more app't, but really, this eye thing seems like no big deal as I look back on it now.

Make the appointment and go. And don't bend over when trying on shoes. Sit on one of the little benches first.

Hi Kerri,

I have weird medical crap too (I'm 31), and I totally get the choosing to travel to see the doctors you trust. I hate it sometimes too, but it IS worth it.

Melissa

Tell me about it. I'm flying back to Chicago from Florida this weekend just to see my long-standing hometown medical team. My eye doctor is worth traveling 1,400 miles for!

Kerri, it seems like a lot of people do the travel to see a good doctor thing. I drive 2 hours one way, as well, for most of my appointments. And you're right, there is a lot to manage...and man, I get where you're coming from. It'd be different if it all WORKED all the time, but that doesn't happen. So where's the payoff?? LOL!! One day at a time, I guess. Moment by moment.

great post! Can totally relate

Hi Kerri,
That was a moving post! I share your sentiments regarding the day to day struggles with type 1 DM. I don't think the average person realizes the extent and impact that all of these tests, treatments, appointments, etc have on patients and their loved ones. I think you realize this already, but please don't take your eyes for granted! By the way, the fact that you travel upwards to two hours or more to Boston speaks volumes to the team that is taking care of you at the Joslin. Thank you for sharing your insights; it's much appreciated.
Go Sox!
Ray

Okay okay okay! I was dx'd 4 years ago with T1d, and today I finally made an eye appointment. A pain? Yes. ANOTHER doc? Yes. Taking care of myself like a grownup should? Yes. Sigh.

Thanks for this post, Kerri. I've been putting off my eye exam for almost two years, and just recently got in to see him for the first time in 19 months. Not the greatest news, but I am glad I finally made it in to know where we stand.

I'm so glad your post has inspired people to get dilated eye exams - very important thing!! I, too, can relate to the travel thing. I drive to Denver (3 hours one-way) for my endo and eye dr. And the really fun part is the drive home, which is heading west. In Colorado it is ALWAYS sunny, which is great every day except dilated eyes day, heading west at sunset! Here's the solution: go shopping for a couple hours, let the eyes un-dilate and the sun go down. It's all good :).

I love the first comment the best : D

Wow, this is a perfectly encouraging and convicting post! Thank you :)

I thought you guys might like to hear this.

I shadowed my endocrinologist for a few days this past summer, and I watched him look into the eyes of every PWD. Many of them had some sort of retinopathy, but I LOVED what he told them.

He said that it DOES go away on its own. If you don't need intervention for it, then good control makes the spots eventually go away. Does it happen immediately? No. Does it happen within a year? No. But they DO go away. Your body heals them. And that's pretty cool.

Also, he's the most loved endocrinologist in my area because he ALWAYS makes the patients feel good about themselves, even if they aren't doing well. He tells them what to fix, but he still manages to leave off with something good. He also asks the patients what's going on in their lives, because he knows that the inability to maintain good control can stem easily from stress or other problems. And he works with you to deal with it. He's the reason why I want to be an endocrinologist.

Kerri,
An extra great post today! Thanks!

I agree about the doctors’ appointments. I moved (three and a half years ago) and I still go to most of my old doctors two hours away. I heard horror stories from endo’s where I am now, so I just kept going to my old doctors. I agree about the hassle of loosing so much time to them, which has lead me to become super organized with them, and plan them on the same day. Still annoying, as I’m missing pretty much the entire day, but it’s now only 1 day (sometimes 2) every quarter…which makes me feel SO much better. It seemed like I was wasting a day a month for some doctor’s appt…I get every other Friday off, so that was one of my two days off each month. Such a bummer. Once a quarter I can manage.

And thanks for the reminder…I have an appt tomorrow, and I need to plan when the next will be. Late appointments help, too. Oh and I agree with others…I shop after me eye appointments. I get funny looks, but hey, I have a “pager” doesn’t that get me stares also?

All I can say is...at least it's not as bad as the 14000 OBGYN appointments when you're preggers. And I'm not even diabetic. I LIVED at his office.

So here's the $64,000 question: did you make the appointment yesterday? :)

Thanks for reminding me to get off my duff and call my mail-order pharmacy, too!

I'm right there with you on this one. After finding out my endo changed offices, I've been procrastinating on calling his new practice to schedule an appointment. I just liked being able to eek out another month between appointments. But I finally got around to calling today - no more procrastination here.

I'm so right there with you. I used to cancel appointment after appointment because I was scared stiff of the conversations that would ensue and the changes that would have be made as a result, until my endo refused to refill my prescriptions because I hadn't been in to see them in over two years. Things have changed in their office since then and I no longer dread going in, but it's still the anticipation of what's going to need to change, and the knowledge of a lot of hard work ahead of me. Will be praying that things become less stressful for you!

I am too stubborn to change Endo's. After his office did not sign a new contract with my insurance provider I still go and pay the out-of-network cost. I have been with him for 15 years and do not want to change. Heck in the last five years my employer has changed insurance four times. My Endo also does not take new patients so I am sticking in there.

As for the eye exam my Optometrist has a nifty machine that takes a cool picture of the inside of your eye. I have not been dilated in three years. Which is good, because I hate the scratch-your-eyes-out itchiness I get from those darn drops. Of course I have to go see an ophthalmologist for some minor bleeds in my eye this year...but I am hopeful that is nothing.

Share your pain on not wanting to change, or for not wanting to go to appointments either.

MAKE THE CALL!!!

After recovering from the coma that almost killed me last September, my priority is TAKE CARE OF MY DIABETES FIRST. Everything else will fall into place. You will NOT see BSparl graduate high school if you are blind. This smacks of Tough Love, but it is SO important. BSparl wants a healthy, whole mother!
Said with love!

Your husband likes the Yankees? My man!

Update: I had my first dilated eye exam on Monday and all was well. I liked the doctor, his office, and their efficiency. I will definitely go back. I have to go back in a year for the dye exam (have no clue what that entails), but I'm SO glad that it's OVER.

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