Thursday, April 7, 2011

New Eye Doctor, New Experience & Play That Funky Music White GIrl.

And so the story continues............

Part 1: You Keep Going - Even When You Think You Can't

It’s really hard to be strong sometimes, even when everyone thinks your some hard ass Jersey born girl. Even when being strong for others comes easy to you, it doesn't mean that it's easy for you to be strong for yourself. It’s hard to walk into your Eye Specialist’s office after experiencing a 1 in a million thing that was NOT diabetes related and get all types of tests done to prove that yes, it really was a 1 in a million fact.

It’s hard accepting all that 1 in a million means. But you do it anyway because your survival mode kicks into high gear and you know yourself well enough to realize that if you don't accept it almost immediately after it happens, you never will. And you tell yourself, fuck having to drag an anchor like that around your neck for the rest of your life!

And there was no way in hell that you are going to live your life filled with anger over something that can never be undone! In this 1 in a million case, anger would not be a great motivator.

So you move forward with gusto, find the funny, and joke about it 9 times out of 10 times with your friends, except when you don’t.

You continue on with your life, with work and you strive to live a better life with your 1 in a million status than you did before, and you're happy that you are.

But then your Dr. dies and that's really hard because you miss him and how safe & blameless he made you feel.

It’s hard having a schmuck named Dr. Dick take his place and it’s hard speaking up for yourself and calling Dr. Dick’s practice & ratting out his shitty behavior.

But it’s gratifying when your eye specialist's office understands your feelings and hook you up with a NEW Dr. A Dr. that I will be referred to for the rest of this story as Dr. S. You're told that Dr. S has as much smarts as Dr. Dick and 100 times the amount of empathy.

But even knowing that your voice had been heard and a new Specialist has been found, it’s still really tough going back to said office for all types of reasons.

To be quite honest, you really dread it. It’s an emotional roller coaster that hits you in your gut. You get anxious, you get nervous & you get scared.

But you still go, even when all you want to do is hide under the covers and make it go away.

Even when you wake up late and rush to your appointment and get pulled over by a cop because you had no idea that you were going 50 in a 25. Of course, you call the Dr’s office hoping that just maybe they’d tell you to reschedule, but they don't.

They are nothing but kind and tell you to take your time driving over and not to get any more tickets on the way.

Your heart pounds when you walk in the door and your was greeted with a smile and a hello.

You pay your outrageous co-pay and are taken back behind door number 1 for the first round of Q & A.

Part 2: And now, for the Question & Answer Part Of Our Show ~

Q&A1: What was your #bg this morning Me: 107

Q&A1: AWESOME. What was your last A1C?

Me: 7 Q&A1: YAY, it went down! Has your vision changed in your right eye since the last time you were here?

Me: Nope

And the questions kept coming...

Q&A1: How bout floaters in your left?

Me: Not much, every once in a while there’s a few, but that’s it.

Q&A1: So, nothing to write home about then. Me: Nope.

Q&A1: GREAT, Ok, let’s take you back then.

But I stop her and thank her for being so kind, and for understanding why I no longer wanted to deal with Dr. Dick, and she got where I was coming from on every level and apologized for his behavior.

Me: It’s just that Dr. Mac was SO GREAT and SO KIND. And it was hard enough dealing with what happened, but I did and I have. But losing him was really tough! Thanks for listening to a patient’s complaint and doing something to make right.And she hugged me, and led me down the hall and past exam rooms, and at the very end of the hallway, was a picture of my late Dr., Dr. Mac

And I just about lost it - But I didn’t. I swallowed the lump in my throat and walked into the exam room.

Where Q&A2 lady started putting me through the vision tests - Nothing had changed in that department.

She made small talk and told me that the pressure in my eyes was great – and I was happy to hear that.

She put in the dilating drops and made more small talk – and then told me I could sit in the hall while my eyes dilated. And once again, I thanked my clinician for being nice and understanding my wants and fears as a patient re: Dr. Dick.

Q&A2: Oh, we all heard about it - And your right, his bedside manner is…lacking.

And then she smiled and left me to sit in the hall while my pupils to get all types of funky.

I stood right back up after she left, took out my iphone, and took a picture of Dr. Mac's portrait .

The patient sitting next to me said something like: Ahhh, you want to prove you were here, huh.

And then I said something along the lines of: No, I want to remember him. And I want to remember how he looked when he smiled because he's not here anymore and I miss him.

And then I sat down,avoided eye contact, tweeted a few tweets and just tried to breathe.

I was called into Dr. S’s office and was told to sit down and wait.

So I did. And continued breathing.

And in walked Dr. S, as nice as pie and as chatty as possible.

The questions he asked made it obvious that he had read my file and the pre patient questions that I had answered a ½ hour earlier.

He looked in my eyes through that ocular thing they have at eye Dr’s offices, except this one had a whitish blue neon circular light that shined right in my eye. I barely felt it in the right, but it damn near blinded my good eye.

Than he did a series of tests with a hand held light and went right into every corner of each of my eyes. He took his time and it lasted about 4 minutes. And then he sat down, wheeled his chair up close, and looked me right in the eyes and said:

OK, Kelly, here’s what I see. Things look pretty good, in fact really good. Your right eye has healed nicely and it looks good.

Your left eye looks good…

Me: Except for those 2 pinholes which cause the slight bleeding.

Dr S: Yes, you do have two slight pinholes – 2 tiny hemorrhages with very slight leakages. BUT there’s absolutely no swelling in the optic nerve, which makes me very happy. If you continue with what you’re doing, I believe your eyes will continue to be healthy for a long time.

ME: SO, your telling me that nothing has changed in my left eye?

Dr. S: No

Me: So on a scale of 1 to 5, with 5 being the worst re: the optic nerve, what am I?

Dr. S: On a scale of 1 to 5, with 5 being the worst, I’d say you’re a 0.5.


Dr. S: YEP

Me: Yeah, Ok because that’s my good eye- we have to keep on top of it. Dr. S: I agree.

Me: And there’s no swelling or pinholes in my right eye?

Dr S. No, that eye’s just fine.

And at that point I looked at him, threw my hands up in the air and gave him my, “are you fucking kidding me” look & we both started to laugh.

Me: So like, there’s no way I could switch those pinholes to my right eye then? You know, keep all the craptacular confined to the right eye?

Dr. S: No Kell, as of now, I don’t have those super powers.

And that made me smile.

And then I thanked him for being a great doctor, and for taking the time to talk with me and read my file and understand my fears.

Me: Look, your partner Dr. Dick has no bedside manner – and that could really cost patients their good health. Here’s the thing, if a patient refuses to come back because of the way they were treated, it might hurt your practice financially, but nothing your practice could handle.

The real damage is done to your patient. Some won't come back to your office, or any eye specialists office for that matter! And by not coming back, the damage that will be done is permanent – they’re the ones who will get hurt! I’m a Diabetes Advocate, I write about living with diabetes and I’ve spoken to a room full of clinicians on what we as patients go through. You guys need to set some ground rules with your clinicians, including your doctors on how they MUST interact with their patients.

Dr. S whole-heartedly agreed with me – on both Dr. Dick and setting ground rules with the staff on patient interactions.

And then he told me to come back in August and to keep up the good work!

We shook hands and said our goodbyes. I scheduled my appointment and walked towards my car. It was the first time in a long time I hadn't cried as I walked out those doors.

Part Three: Happy + Sad = Embracing Your Inner Lady Gaga

It was weird, I was happy because it had been a much better appointment than my last and I'd received good news, but I still felt sad. And as long as we're being all honest and touchy feely, I think that will always be the case whenever I have an eye appointment – and that’s OK.

Eye appointments will always bring up all sorts of emotions erupting from my very core. Because let's face it, how could they not?

I kept thinking about how Dr. S said that if I continued with what I was doing, and continued to do all the diabetes work I was doing, he believed my eyes would continue to be healthy for a long time. And then I thought about what that would entail on my end and I cursed my one in a million status for just a second..... And then I snapped back into reality when I heard familiar words that I normally love to sing about "shooting stars" on the radio, followed by:

“I could really use a wish right now (wish right now, wish right now)”

That would be the very point when the tears started to pour down my face and I wished out loud for continued good health and a happy life.

And then I switched the station because I didn't want to cry - I was grateful and I wanted to be happy, damn it! Lady Gaga’s “Born This Way” was on another station and I immediately started singing the lyrics as loud as I could.






And at that very moment, I believed every single word to be true ~


Penny said...

YOU are so very awesome in so many ways Kelly - for being brave, for being yourself, for being kickass NJ all the way and for being bold. here's to a great, long life, full of beautiful sights you will see with those beautiful eyes!

Scott K. Johnson said...

So glad to hear that things are looking good. Your strength is a testament to your character K2.

Simon said...

Hey Kelly,
To be honest I'm blown away by this post.
Over the last couple of months I have been noticing you around Twitter and reading a little of your story on your blog, I wish I could put into words how much I admire your courage.
I am in the process of coming out of an horrendous two years with diabetes eye problems, whilst mine weren't one in a million things I developed proliferative retinopathy and vitreous bleeds in both eyes and supercharged bilateral cataracts and found myself virtually blind in my 30s. I feel your pain on so many levels. The frustration at not getting straight answers from medics and worse still the fear at not knowing what your future holds....
Three operations and around 15 sessions of laser later things are finally on the improve for me and I trust they may continue that way for you.
Once again thanks for your post. you are a real inspiration

Bernard said...

Kelly, words fail me. Thanks for this most excellent post. I missed not seeing you in LA on Friday.

Cara said...

You made me cry. That is all.

Allison Blass said...

It's great to hear you found a doctor that you might connect with (or at least one you don't hate like Dr. Dick).

I know exactly how feel about losing a doctor. My first endocrinologist died of colon cancer when I was in high school and it was *devastating* because he was one of the few endos who actually *got it*! Lorraine Steihl, the former volunteer chair who was at Government Day, she actually knew my endo and so we were chatting about him. Yeah, it's still sad today. I actually wish I had a picture of him, from before he was sick, but I don't. You had the right idea taking a picture.

So big hugs but hopefully you'll be able to find someone who can help you too.

Sarah K said...

Wow. Just... wow.
Your story is amazing K2. You are a very strong woman. SO glad you found Dr. Sweetie and don't have to deal with Dr. Dick anymore.
And if I have learned anything from this post, it's to tell my endo how much he means to me. I've told others, but not him. He's the best one I've ever had, apart from an LPN I saw when I was a kid, and when she moved, it killed me. I grew close to her, she was more than a medical professional, she was a close friend... and I swore I wouldn't get that close again. But now your post has me double thinking that decision. It's okay to let them hold a special place in our hearts, especially when we know they are taking care of us as a person - a human being - a patient, not a dollar bill.
HUGS and thanks so much for this post.

Scott Strange said...

Love yas girl! Your strength and willingness to share the times that you just feel weak really inspire me and I am sure so many others.

Once, when I was going thru a really tough time a friend of mine told me:

Every one has their cross to bear in life. Some of the are light, some are heavy and, somedays, they just seem immovable. But no one ever said you have to carry the damn thing all by yourself

Jaimie said...

Amazing post...pass the kleenex... Your strength, courage, determination is steadfast! luvva u...

Jess said...

kelly, i love how you are always so honest. sharing your story most definitely helps other people.

and yay for things looking good!

Sarah said...

Crying now. Good tears, with a smile as I came to the end of your most excellent post (hi, Bill & Ted). You *are* brave and amazing. Yay for you and those eyeballs! Cupcakes and glitter all around!! <<>>

Meri said...

I love this post. I love that you marched into that office and told them what is what! And I ESPECIALLY love that all is well!

Thanks for the smiles! You are a rock star!