Saturday, June 16, 2012

A New Road

Twenty-one years ago yesterday it was a hot and rainy Saturday.  I was sitting on Dr. H's exam table, kicking my feet out of habit and because my inner child is about twelve.  I was there because of an out of control wound on the outside of my right ankle.  What I couldn't figure out was why Dr. H had drawn so much blood.  Plus I was starving since he'd insisted I be fasting.  Not to mention I was so thirsty that I had cotton mouth.

Dr. H had looked briefly at my ankle, but he'd been far more interested in asking me a series of strange questions.  He'd even checked the whites of my eyes.  I figured after years of being our family doctor, insanity had finally claimed him.  I mean who cares what I'd been eating when I'd actually lost over 30 lbs.  That is what the doctor who said I had Type 2 Diabetes ten months ago told me to do.  Actually, that was the only thing he told me to do.

By the time Dr. H returned, I was starting to get a bit irritated.  In fact, I'd been irritated a lot lately and that was not like me at all.  I hadn't really felt like myself for a while now.  Sometimes it was like a stranger was living in my body.  One that was quite a bit meaner and angrier than I'd ever been in my life.

I shook my head to clear it and focused on what Dr. H was saying.  Did he just say something about high blood sugar?  "Doc, I told you that endocrinologist told me last August that I had non-insulin-dependent diabetes.  He told me to lose weight and I'd be fine.  I've lost more than 30 lbs. so that has to have helped, right?"

When he took my hand, I knew I wasn't going to like what he was about to say.  In one of those strange moments of clarity I sometimes get, I knew that his next words were going to drastically change my life.  I was pretty sure I wasn't going to be happy with this new road I'd have to take.  Mostly, I was starting to get scared.

"Honey, you don't have non-insulin-dependent diabetes," he said and the deep breath he took to steady himself doused the small flicker of hope that sprang to life at his words.  "You have insulin-dependent diabetes and probably have since last summer.  You lost all that weight because your body is starving to death.  No matter what you eat or how much you eat, your body can't use it because it needs insulin to turn it into fuel.  You don't make any insulin anymore."

Now I was just confused.  How could I have insulin-dependent diabetes?  You get that when you're a kid and I was about to turn 23.  So he had to be wrong and I said as much.  Dr. H was a great doctor, but no one can know everything.

He assured me that not only was it possible, but it was true.  Then he reached behind him and grabbed what I would soon learn was a blood glucose monitor.  He pricked my finger, applied blood to the strip, inserted it into the machine, and we watched it count down sixty seconds.  When the 386 popped up, I had no idea what it meant but by the look on his face, I knew it wasn't the winning number.

"When did you last eat?" he asked me in his serious doctor voice.  I had no idea why it was important but I knew better than to argue with him.  "I had some cereal before I went to bed last night," I answered then quickly added, "It was before midnight, I swear."  Dr. H actually smiled, but it didn't last long.

"Normally, I'd put you in the hospital until we can get a handle on your blood sugars, but I know you don't have insurance.  And I know from your family history that your grandmother's brother had a reaction to insulin the first time he took it so what I need you to do is to come back first thing Monday morning and plan to stay all day.  We'll teach you to give yourself shots and be able to watch you for reactions to the insulin."

He paused to make eye contact with me.  "Promise me you'll be back here Monday morning.  This is not just important.  This is life and death.  You understand that, right?"

"Doc, I don't think I can give myself shots every day.  You know how much I hate needles," I said with a shudder.  I'd been afraid of needles for as long as I could remember.  And with that thought, the tears began to fall.

Dr. H reached behind him and grabbed a tissue without ever losing eye contact.  "I know, honey, but if you don't take insulin shots you are going to die.  In the not too distant future you will slip into a coma and not wake up again.  It is that serious.  And we will do everything we can to make it as easy and painless as we can."

"Can Mommy come with me on Monday?" I asked, not the least bit ashamed that right then I needed my Mommy more than anything.  He nodded his head.  "Okay, I'll be here Monday morning.  I promise.  What do I do until then?  And what about my ankle?"

"I'm getting to that," he said and I notice he looked visibly relieved by my promise.  "Until Monday I want you to get lots of rest and don't do anything strenuous at all.  Drink lots and lots of water.  Be prepared because you'll be going to the bathroom often, but just keep drinking water.  Try to stay away from anything starchy or sweet.  Stick to meats and vegetables.  And if at any time you feel nauseous or your back starts to hurt like you've got a kidney infection, then go straight to the ER.  Don't stop to call me, just go.  And as soon as you get there tell them you have insulin-dependent diabetes but haven't had any insulin.  They will know what to do."

The tears kept coming and fear was starting really set in.  I'm pretty sure I looked like a deer caught in headlights.  "Don't worry, kiddo.  You're not going to do this alone.  You'll have lots of help along the way.  When you get home today, tell your mom to call me and I'll go over it with her."  He put a business card in my hand.  "Give her this card.  He's a great doctor and he'll be expecting your call.  He'll work you in Monday as soon as we're done here.  He'll get that ankle fixed up the best he can.  I'm not going to lie to you, the next few months are going to be hard and probably frightening for you, but we'll all work together to make sure you get through it."

"I'm going to put a new bandage on that ankle.  I'm going to do the best I can with it and we'll just leave it alone until you see Dr. Y.  Stop doing all that other stuff the dermatologist had you doing."

"Yes, sir," was about all I could manage.  I'd reached my limit for the day.  I couldn't take in one more thing and Dr. H knew it.  He helped me off the table and helped me gather my stuff.  It was still raining, but he walked me out to my car and wouldn't let me drive off until I'd put my seatbelt on.  I don't remember the drive home at all.  I just remember suddenly being in our driveway and noticing that it had stopped raining.

I've written about this day before.  Not in this much detail, but I thought today was a good day for the details.  I went into that first week of my new diabetes battle without a single clue of just how hard and frightening it would get.  There were a lot of numbers tossed around that summer.  My blood sugar that Monday was 412, but I'd made it through the weekend without needing to go to the ER.  My favorite of Dr. H's nurses was tasked with teaching me how to give myself insulin shots.  She told me most people learn on an orange, but she said we were going to go a different route.  She loaded a syringe with saline, rolled up her sleeve, and offered me her arm.  

I took a deep breath, shook my head, and gave myself my first shot.  When I didn't pass out, I handed her the syringe and told her to give me some insulin so we could do this thing for real.  When I'd done it again with insulin and still hadn't passed out, we both laughed so loud that Dr. H came to see what we were up to.  I think the whole office lined up to hug me.

We would have to stay there for a few hours.  Time I spent napping on the couch in Dr. H's office.  Every so often one of the nurses would come take my blood pressure and temperature, but there was no sign of a reaction.  Eventually, the appropriate prescriptions were written and my Mommy would tuck them into my ever-growing bag of supplies and instructions.  Dr. H took us to lunch and then it was time to pick up the new prescriptions.

Later that day, I'd find out that Dr. Y was a plastic and reconstructive surgeon.  A fact that would make me panic so much that I actually hyperventilated in his waiting room.  Dr. Y was definitely a straight-shooter and he didn't mince words.  He told me the last thing in the world he wanted to do was surgery, but if it would save my life he wouldn't hesitate to insist that it was necessary if the time ever came.  He told me that the worst case scenario was that I'd lose my right leg from the knee down.  He made sure I understood that not only did we have to do exactly what he said about the wound, but I had to work really hard to get my blood sugars much lower so my body could do its job.

Dr. H started me on insulin and a pill for my underactive thyroid.  I'd taken the same pill from the age of 11 to 16, but this time when I'd start taking it I wouldn't stop.  Not that we knew that at the time.  By the end of the summer, my wound was healing nicely and surgery wasn't going to be necessary.  My blood sugars weren't great but they were much better and we were working on making them better.  I still didn't have insurance so my parents were paying for the medicine I couldn't afford which was pretty much all of it.  And I began to make the rounds to all the specialists you're supposed to see when you have diabetes.

We found a new endocrinologist and I went to a few appointments with him, but stopped after the third or fourth visit.  He was completely convinced that I'd be lucky to live another ten years and that I'd never live to see 40.  So I went back to Dr. H who told me the guy was nuts and I'd live just as long as anyone else, I'd just have to take extra-special care of myself.  Since I'll be 44 in about 9 days, I think Dr. H knew what he was talking about.

I'd seen optometrists since I was seven and got my first pair of glasses, but now I needed to see an ophthalmologist.  The one we found was about as cheerful as the endocrinologist.  He was sure I'd be blind by the time I was 30.  I didn't bother to make a second appointment.

So here I am 21 years later.  Still alive, obviously.  Still wearing glasses, but not blind.  I've just had over a year of some of the best blood sugar levels I've ever had.  I've had a lot of different doctors during those years.  Some as positive and supportive as Dr. H, but some haven't been.  I try to keep a hold of the good ones and just leave those negative ones behind as I move forward.  

2012 has brought more than its fair share of medical problems.  Liver and spleen issues.  A bone marrow biopsy and six blood transfusions.  An endoscopy, colonoscopy, and a pill endoscopy gave my gastro film of my digestive tract from entrance to exit.  Literally.  Throw in a couple of CT scans and you have my year so far.  Oh and let's not forget the wound on the same damn ankle from 21 years ago.  I'm pretty sure they'll be naming a wing of Baylor Carrollton Hospital after me and my insurance company.

I take a lot more pills now than I did 21 years ago.  I use two completely different insulins than I did and instead of syringes I use pens.  I have a lot fewer highs, but also more lows.  I know my body much better than I did.  I can manage to eat ice cream with barely a spike in my blood sugar, but I can still only have orange juice when I'm low because even just a few swallows will shoot my blood sugar up 30 or 40 points.

When I was diagnosed, the only diabetic I knew was my grandmother's older brother.  Now I know probably hundreds of them.  Including my Mommy and my stepmom who both have Type 2 diabetes.  I have diabetic friends and family all across the world.  One day I hope to meet some of them face to face, but until then the internet keeps us closer than I ever thought possible.

It's funny.  Years ago if you'd ask me about places I'd like to see in this world I'd have listed London, Paris, Dublin, Venice, Madrid, Rome, & Tokyo.  Now that list is a bit different.  Those places are still on it, but just a bit further down because places like Los Angeles, New York, Oregon City, Las Vegas, Indianapolis, & Kansas City have taken over the top of the list.  Unless I can convince my loved ones in those cities that Texas is a great place for a meet up.  Failing that, there just might be some traveling in my future.  Maybe this road isn't so bad after all.


Anonymous said...

Thank you so much for giving me the chance to be on your(road). luv you lots, Moma Joan

Mike Durbin said...

My friend, if you make it to Indianapolis, I'll meet you there. :-)

Lizabetic said...

Your diagnosis story made me sad! Sorry you had to go through that. You have come a very long way since then it's clear :)

victoria said...

What an incredible journey you've been on. I absolutely love Dr. H! It was his care and concern that helped shape your attitude! I love that you ignored the negative people in your life and chose to follow the positive. You, my dear, are an inspiration. What a story Cheri, what a story.