Back when I was a young bird with type 1 diabetes, insulin cost about $70 dollars per bottle.  (And I had to walk uphill both ways to the endocrinologist's office.)  I had no concept of this cost, or how it played into my family's finances, at the time.  I would just open the fridge door, grab the bottle, uncap the orange top to a 1cc syringe, and take the units my mom would yell to me from the kitchen sink.

"Two. Two of Regular should do it.  Rotate to your right arm this time, okay?"

"Okay!"  (And then I'd proceed to jab it into my left arm because I'm right-handed and also stubborn.)

Now, twenty-five years later, insulin has taken a bit of a price hike.  I just ordered a three month supply of Humalog from Medco and the total for the insulin came to six hundred and ninety-seven dollars.  For six bottles of Humalog that will be all gobbled up by early March.  (And thanks to a high, but manageable-on-paper deductible, we're responsible for the full cost this round.)  Almost seven hundred dollars worth of insulin.

We're lucky that we're able to pay for that cost without panicking, but knowing what these bottles cost without the assistance of insurance makes me look at everything through a diabetes lens.  When three days are up on my insulin pump site, I am very aware of the twenty-odd units left in my pump cartridge and in the tubing.  And when I refill the pump, I make sure I only put what i think I'll need into the reservoir, instead of automatically filling it to the 185u mark.  (Which is what I did before, but now I'm very aware.)  And when I prime the 43 inch tubing, I have this mental image of siphoning it out like I'm draining gas from a Jeep Wrangler when I'm done with the site.  (Ew.)

The other day, my insulin order arrived.  The UPS delivery guy rang the doorbell, and I greeted him with a messy ponytail.

"I have a delivery for you, but I didn't want to leave it outside in the cold.  It's medication," he said, handing me that familiar "giant pillow" that protects the insulin vials during shipping.

"Thank you!  I appreciate you taking good care of ... of the drugs," I said, realizing I wasn't going anywhere productive with my statement.

"Yes, the drugs."  He smiled as I signed the electronic receipt.  "I'm curious what comes delivered in a giant puffy pillow."

"Insulin.  There are some bottles of insulin in there."  I handed him back the signature pad.  "Thanks for bringing ... the drugs.  That makes you sort of my dealer."

He tucked the signature pad back into his pocket and, without missing a beat:  "No problem.  Call us when you're ready for your next fix.  Happy holidays, miss."

I went back into the house and unpacked the insulin that was just delivered by my UPS drug lord.  And as the bottles lined up neatly in the butter compartment of the fridge, I was thankful.  I'm thankful that I can afford this necessary medication, but I remain hyper-aware of the costs of both having and not having access to it.  A fridge full of insulin makes me a very, very lucky girl.

(With the holiday season upon us, now is a good time to think about others and help, if you can.  To make a donation to the Life for a Child efforts, please click here.)

Posted by Kerri Sparling at 08:28 AM | Permalink | Comments (46)

So on Sunday night, I finished singing BSparl her bedtime song and leaned in to tuck her into her crib.  But because she was giggling and reaching for me, I leaned in to give her an extra hug.

NEVER GO IN FOR THE EXTRA HUG.  

Or at least that's what someone should have whispered i my ear.

Because when I leaned it, she happened to reach up at the same time and her thumb met my eye with such force that it knocked me to my knees.  Apparently, her thumb nail scraped off a section of my cornea (or, as my eye doctor said, "You know when you eat string cheese and you pull a section of the cheese off?"  Thanks, Dr. S.  I will never, ever eat string cheese again.  Ever.) and severely damaged my eye.

"Oooh, okay bedtime now!  Night night, I love you!"  I said, and crawled out of her room.  I immediately went and called my NurseBestFriend and left her the most rambly, tear-filled message:  "I'm fine, the baby is totally fine, but she just scraped my eye mad and it's wicked painful. Should I go to the ER?"  I also called my mother and filled her in:  "Ma, the baby just tagged me in the eye and I'm in a lot of pain.  I may need you to take me to the eye doctor in the morning."  (Now is a good time to mention that Chris has been in CA for the last few days and isn't expected home for a few more.)

That night, I didn't sleep more then 45 minutes because it felt like my eyeball was on FIRE.  Every time I blinked, it was like razors were being dragged across my eye.  I didn't know such a teeny area could produce such pain!  Every time I was able to fall asleep, I must have moved my eye while sleeping, and it would wake me up in tears.  I texted my mother at 3 am with a cryptic: 'Haven't slept yet.  Eye is terrible. Please come by in the morning if you can."

I spent a sleepless night tossing and turning (I will mention that BSparl woke up for a rare 2 am screamfest, and then my pump site pulled out at 4:15 am, making it almost the perfect evening), and eventually fell asleep for about 30 minutes.  When I woke up to the sound of BSparl calling for "Mama" at 6:45 am, my eye was the size of a baseball and my whole body was freaking out.  Making her bottle and testing my blood sugar, I was like a blind mad scientist experimenting in my kitchen.  I have no idea how she and I both ended up fed and dressed before my mother arrived.

Long story condensed so that I can tell it before my eye starts to fade on me tonight, the my wonderful local eye doctor confirmed that it was a "helluva scratch" and that it would take several days to heal.  "Several days of discomfort are on tap, but I want to see you every day this week to make sure that you're healing okay." 

So for the last 48 hours, I've been flanked by friends and family, who have been staying here around the clock to take care of BSparl and to help me read my meter, dose my insulin, and take care of other diabetes tasks.  And the cast of caretakers continues to amaze me, making plans to be here 24/7 until Chris returns. (My family rocks.)

In the meantime, the best way to heal this corneal abrasion is to rest my eye.  Like lay in bed and keep my eyes closed. (See also: OMG boring and also very painful)  I have eye drops and antibiotics to prevent infection, and tonight is the first time I've been able to open my computer without literally tearing up and bailing.  But I'm a bit of a sight.  If I'm not laying in bed with my sunglasses on (like a wounded starlet on the bender of a lifetime), I'm sporting my jaunty little eye patch and some bedhead.  

Exhibit A:

Posted by Kerri Sparling at 07:55 PM | Permalink | Comments (30)

"Everything looks good.  No progress is good, actually.  Means your eyes haven't deteriorated any further in the last five months."  Dr S, my eye doctor at the Joslin Clinic, ran her fingers across the keyboard, typing notes into my online file. 

"So it's the same as back in November?  When I moved from mild to moderate retinopathy?"

"Right.  Still non-proliferative, but the same.  Not worse, by any stretch.  We're working with a few spots, a very small bit of leakage, but nothing I'd recommend treatment for, other than watching it closely."

I let out the breath I didn't realize I was holding.  The fluorescent bulbs in the room were bright and ricocheting off the white walls, making me feel like I was in an avalanche of light.

"We do want to check on one thing, though."  She turned her chair towards me.  "There appears to be some swelling of the optic nerve.  And I'd like to have that checked more precisely with the OCT test."

I looked over at the eye chart on the far wall.  When I had first come into the room, I wanted to go over to the teeniest line and commit it to memory, so I could recite it at will.  "SNDRZ," I'd say, and they'd cancel all other tests that day, in recognition of my clever eyeballs. 

"Okay.  Was there swelling last time?"  I couldn't remember it being mentioned.

"Yes, it's here in your chart.  And from what I can tell, it's still present.  But my measurements are subjective, and I'd like to run a more precise test, so we know exactly where we're at with this.  The test is really just another picture of your eye; it's not painful."

"I can't argue with that.  So sure, let's do that test."

I went back into the dilation waiting room to be called in for the OCT test.  The lights were dim and a large television displayed HD images of starfish regenerating lost limbs as they crept along the ocean floor. 

"The starfish reaches out with the limb that is still growing back.  It remembers what was once there and what will be there again," Leonard Nimoy narrated.  I pictured my eyeball, crawling across the ocean floor, trailing its optic nerve in the sand.

"Kerri Sparling?"  The eye photographer (what is his official title?) brought me into a room.  "Just rest your chin here, and stare straight ahead at the X.  I'll tell you when you can blink, and we'll grab a few images of those eyes, okay?"

"Just look at the Space Invader thing in there?"

He laughed.  "Yup, right at him." The OCT test was completed in a matter of quick clicks, and I returned to the waiting room to wait patiently for my doctor to review the results with me.  

"Kerri?  Come on back," Dr. S said, holding computer print outs in her hand.  The office door shut with a snap, and we stood in the middle of the room, crowding around these papers like kids with a treasure map. 

"This?  Is your optic nerve.  See how it's thick on both sides and has that dip in the middle?"  She pointed, and I panicked.

"Should it have that!?"

"Yes, it's exactly what it should have.  There isn't much swelling at all.  Actually, there's barely any, which is why I wanted you to have this test in the first place, so we were measuring precisely and not panicking preemptively."  She smiled warmly.  "Everything looks good.  Let's get together again in four months, okay?"

"Sounds great."  I went to get the door, but turned back to her.  "So my eyes are okay?  I mean, not perfect and they still have the moderate retinopathy and all that crap, but there's nothing to panic about, right?  I can hold steady and relax about this a little?  You said no progress is a good thing, right?  I tend to freak out.  Does it show?  I bet it shows."  The incessant questions spilling from my mouth and my freakishly-dilated eyes probably painted me a bit ... off.  

"You are fine.  Go home and enjoy that first birthday party.  I'll see you in four months."

These appointments are hard for me to follow through on, for a dozen different reasons.  But one of the big reasons is fear.  Sometimes I want to go full-on ostrich about this whole disease and pretend it's not happening.  Weird thing is, I always feel better after I know where things stand.  Even if the news isn't always the best news.  I'm learning to roll with it.

And that's progress.

Posted by Kerri Sparling at 09:29 AM | Permalink | Comments (22)

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.

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.

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

Posted by Kerri Sparling at 10:48 AM | Permalink | Comments (34)

Note From Kerri:  Lows suck.  Larry Bird blood sugars shouldn't be making appearances in the wee hours of the morning.  And not waking up right away for these kinds of lows can be terrifying.  Abby (the Person) writes about a low that left her reeling and the superhuman strength of her wonderful mom.

8:00pm – 276 mg/dL (no idea why)

10:30pm – 288 mg/dL (negative ketones, and the correction bolus that ruined everything - give me a minute to explain)

12:00am – 120 mg/dL (3/4 bolus for a snack, and to bed I went)

1:45am – 33mg/dL (awesome)

I know why this happened. When I took that second correction at 10:30 pm, I thought to myself, “I might go low from this, but I feel like crud, and I’ll just eat a snack before I go to bed.” And so I did: a very small bowl of Raisin Bran cereal, only bolusing for 3/4 of it, and off to bed I went with a blood sugar of 120 mg/dL, feeling like I avoided that low.

Feeling pretty dia-successful.

When I woke up at 1:45 am feeling a little warmer than usual, but with no other symptoms, I decided I should probably check.

33mg/dL. (Editor's note:  Whoa, Larry Bird) 

Defeated. You win tonight, diabetes. A 6oz juice and a 19g granola bar later, I lay back in bed. And that’s when things got scary: seeing stars, extreme sweating, nausea, crying (which is new to me, and frankly I’m not a fan). I grabbed the glucose tab bottle, and obviously it was brand new and had that cannot-open-without-a-chain-saw plastic thing under the lid.

By this point I was freaking out. I stumbled into my mom's room (yes, I’m 23 and I live with my mom; times are tough, people and I’m a full time college student with two jobs, don’t judge me) where she saw the tears and the shaking hands and presumably my face sans any sort of color. She grabbed the bottle and ripped the plastic off with that “my daughter is in danger” sort of strength that I still don’t understand. All I could manage to eat were three glucose tabs.

I really thought I was going to die, like straight up fall on the floor (only with a blood sugar probably in a safe range at this point) and just die. The re-check showed me a 66mg/dL. Then I got really frustrated because I was almost back in range but I had EVERY low blood sugar symptom on the face of the earth, only on steroids. (For some reason updating my Facebook status and texting a few friends at this point seemed like a grand idea.) This is not the first time I haven’t woken up until I was under 40mg/dL. I’m sure it won’t be the last, thanks to my lack of a continuous glucose monitor. Actually, I take that back … I have a CGM, but I hate it. I try it at least once a month, I do everything by the books, and if I get one or two readings that are within 20 points of my finger stick, it’s a miracle. I’ll be starting a 7-day-trial of the Dexcom soon, and I already have an email into my endocrinologist asking her for one of my own.

The point of my story is to ask this question:  Why aren’t CGMs a standard of care for diabetes? I bet if I asked my friends who have diabetes for similar stories, I’d get a boatful.  (Then I would send that full boat to insurance companies and ask them if they’d rather dish out a few hundred dollars every month for their patients to have sensors and stay safe, or keep refusing us, keep making it a huge hassle to achieve safety, and instead keep sending me 87 million boxes of test strips that expire before I even think about opening them.) 

The technology is here, but there is clearly nobody working for those insurance companies that knows the first thing about the fear I’ll have when trying to fall asleep tonight.

*   *   *

What makes me nuts is that people who want and need a continuous glucose monitoring system still can't find coverage through their insurance companies.  We've come such a long way, technologically-speaking, and it's frustrating when a fellow PWD can't readily access that technology.  What insurance battles are you fighting?

Posted by Abby (the Person) at 08:37 AM | Permalink | Comments (38)

Despite diabetes, I've always felt like I was in "good health."  (Quotes are necessary, but even though I toted syringes around as a kid, I never felt like the "sick one."  Thus, making "good health" sort of a relative term.)  I have never broken a bone.  I don't often get colds or the flu.  While my friends were busy hacking up their lungs and hiding in their beds, nursing whatever plague ailed them, I was usually germ and virus free.

Until about three weeks ago.  

I don't know if BSparl weakened my immune system.  Or if the move to the new house/baby wrangling/excessive travel contributed to some major exhaustion.  Or diabetes just sort of reminding me "Hey, um ... still here."  (As though I could forget.)  Or if it's just some crazy perfect storm of chaos.  But whatever the cause, I'm currently inhabiting a swiftly failing body.

First off, my wrists are still a mess of tendinitis and carpal tunnel.   Physical therapy is definitely helping, but the process is very slow and since we're talking about my hands, it's not like I can go a day or two without using them.  (See also:  holding the baby, typing, carrying anything, putting on new infusion sets, testing blood sugar, picking up vital coffee cup)  Not to mention, the wrist braces at night aren't doing anything to go against that whole ROBOT feeling.

Secondly, I've been sick with some kind of freak show plague since the very beginning of November.  Started off with a sore throat, progressed to completely losing my voice, and then settled into this really lovely and incessant cough.  I haven't felt right or sounded right in three weeks.

And thirdly, while I was having a coughing fit last week, I felt this pop in my side and after being scrutinized by my best friend (the ER nurse), we both determined that I had bruised or cracked a rib from coughing.  Who does that?! So now every time I cough (which is thankfully becoming less frequent) or sneeze, the pain is pretty intense.

I deal with diabetes decently enough, but I have no patience for this extra crap.  Painful wrists?  Nagging cough?  Busted ribcage?  Hey pain, screw you and the horse you rode in on. ... and then I realize that the horse it rode in on is me, so I have to do something.

I finally have a doctor's appointment tomorrow afternoon to address the plague.  I have scheduled my physical therapy appointments.  And I'm not shy about taking pain reliever to help out with this rib thing.  I need to fix this swiftly failing body because I don't have the patience to deal with all the mess.  Besides, it's ANNOYING.  I don't like having to further dumb down my workouts because of these issues.  I don't like going in for a husband hug only to have to say "Be careful of my ribs!"  And nothing annoys me more than reaching down for my baby to score a snuggle, only to have the action punctuated with pain.    

So, to recap:  I am a ninety year old woman. 

I hope the mending comes quickly.  Chronic pain was not on my holiday "to do" list.

Posted by Kerri Sparling at 10:46 AM | Permalink | Comments (23)

"Just tell me what line you can read.  Smallest one that's clear, okay?"

"Got it."  I looked across the room to the eye chart.  "SNDRZ.  That's the smallest one that's clear."  

"Awesome.  20/16 vision.  Better than 20/20, my friend!"  The eye technician made a note in my chart, and then came over to apply the eye dilation drops to the inside of my lower lid.

"So now I go sit in the depressing waiting room and wait until I'm dilated?" I asked her, standing up from the examination chair.

"The depressing room?"

"Yeah, the one where there are mostly older people and almost everyone is using a cane and being escorted by a family member or something.  Not exactly uplifting."  I don't know why I had a chip on my shoulder.

"I never thought about that.  But yes, that room.  There's a big TV, though.  That's uplifting, right?"

I smiled at her.  "I'll take it."  

I wandered out into the eye dilation waiting room to let a few minutes pass as my pupils freaked out.  I tried to look at my phone but my vision was starting to sparkle-motion on me and I couldn't see a thing.  So I watched the history of Boston (and how Back Bay was literally the back bay of Boston) and waited.

Eventually, I was called into the office, and my ophthalmologist shined the bright light in my eyes while she asked me a few questions.

"So you had the baby!  How old is she now?"

"She's six and a half months.  I love her.  She's awesome."

"Good, good.  So have you had any issues with your vision?  Any changes that you've noticed?"

"Sort of.  I have this bit of cloudiness in my right eye.  Over on the far right side.  I'm not sure if it's exhaustion or eye strain from too much computer work, but it's the biggest change I've noticed."  

"Okay."  She took to my right eye and looked around for a while.  

"Anything?"  I asked.  I just wanted to know.

"No, nothing in that area.  You might just have some dry eye moments or eye strain, like you said."  

I let out this breath I didn't realize I was holding.  

"But there is some retinopathy.  And some macular edema.  Just a little bit - more in the right eye than in the left - so we're going to keep very close watch on this.  It could get better, it could get worse.  There's unfortunately no telling."

"So it's worse than before the pregnancy?"

"Yes.  You've gone from mild non-proliferative to moderate.  And that's okay.  We can handle that."

She kept talking, and I was listening to every word she was saying.  I heard the words "blood pressure" and "laser surgery in the future, but not now."  I heard her tell me that laser surgery wasn't necessary at this point, and that we wanted to schedule a four month follow up.  I heard her tell me that my eyes were still in good shape, considering 24 years with type 1 and my recent pregnancy.  And I heard her say that this wasn't something to completely panic about - just something to watch closely.

I heard all this.  I heard her reassuring me.  And I felt this weird combination of relief and sadness.  Because I'm in it, now.  Eye complications.  I won't be holding my breath during eye exams any more, because I'm not waiting for the change, for that first moment of "Oh, you have retinopathy."  I know it's there.  I have hope that it will repair itself, and that better diabetes control can contribute to faster healing.

We talked for a bit, and I fumbled with my phone to show her pictures of the baby.  I visited the retina photographer and had a few photos of my eyes taken, and then I ventured out to the parking garage to retrieve my car. 

I thought I might cry, but I didn't.  I thought about calling Chris or my mom to tell them the news, but I didn't do that either.  I sat in the car for a few minutes, listening to the sounds of Boston churning around me.  It felt good to just enjoy the silence.  It was going to be fine.  Things were progressing in my eyes and that was to be expected, after two decades with type 1 and the effects of a pregnancy.  It's not time to panic yet.  It's just time to be aware.

I can handle this. 

Posted by Kerri Sparling at 09:24 AM | Permalink | Comments (59)

Back in February 2009, I was diagnosed with tendinitis, in large part thanks to the mass amounts of computer work I was doing.  All that mousing took a toll on my wrist, leaving my tendons swollen and all -itis'ed.  I made some changes in efforts to alleviate the pain, but eventually I caved and received a cortisone injection.

And then some things happened.  Like a pregnancy.  And leaving my old job in pursuit of being a work-from-home pregnant lady and now a work-from-home mom. 

My hands?  Never got that break they needed.  And now the tendinitis has moved from the outside of my wrists to the interior.  It started just after BSparl was born, when I was breastfeeding.  The hand positions required to keep the baby latched on properly weakened the tendons in my hand.  And as BSparl got bigger and bigger, the stress of putting the baby in her carseat and into her crib made the tendons in my hands swell to epic proportions.  Even stopping breastfeeding didn't give me any relief in the hand department. 

I was permanently in pain.

After much prodding from Chris ("Baby, call the physical therapist."  "Call them today?"  "If you don't call them, I'm calling them for you."), I finally made an appointment with the physical therapist.  

"Hi.  I'm K.  I'm going to help ease this pain for you, okay?"  said the physical therapist as she met me in the waiting room.  (Already a 180 degree difference from my interview with the primary care physician.)

"Yes, please.  I've had this pain since before I had my daughter, but since her birth, it's shifted from the outside of my wrist to the inside.  I'm having trouble picking her up, putting her in the carseat, and getting her up from her crib.  Oh, and opening jars.  And turning doorknob."  I shrugged.  "Anything that requires my hands."

"Let's figure out what's going on."

I'd never been to a physical therapist before, and I resisted it because I felt like I should be able to get rid of this pain on my own.  It's not like I can't walk - it's just wrist pain. 

"I'm going to measure the mobility you have in your wrists now, okay?"  the PT asked, and I nodded.  We then went through a series of wrist mobility exercises which she measured with what looked like a plastic protractor.   And it was then that I realized how little comfortable movement I had in my hands.

"You are in a lot of pain throughout the day?  Okay, we need to take some of the stress away from your wrists.  What do you do for work?"

I laughed.  "I am a writer.  I work on the computer for several hours a day."

She laughed, too.  "That doesn't help.  How about when you aren't working?"

"I have a six and a half month old daughter.  And I work from home so I can take care of her, so I'm either typing or toting her around."

"I'm not surprised.  I've examined the inflammation in your hands and did you know there's actually a tendinitis called De Quervain's tenosynovitis that occurs in new moms a lot.  It's exacerbated by the motion of picking up the baby."

"Wow.  So is that what I'm dealing with?  This decoupage syndome?"  (I am clueless.)

"De Quervain's.  And yes.  You also have the very beginning of carpal tunnel, but we're catching it early.  I'm hopeful that eight weeks of physical therapy twice a week, in conjunction with hand exercises done every day at home, that you'll have marked relief.  I don't want to make any promises, but I know we can help you out."

For the rest of the appointment, we spent time reviewing the exercises I was to complete twice a day at home.  (These exercises make it look like I'm painstakingly waving at someone, in slow motion.  Chris is confused by this.  "Are you waving at me?"  "No, I'm gliding my tendons.  What, that's not cool?")  And the PT also used an ultrasound machine to pulse heat and vibrations into my tendons to help ease the swelling.  (It was kind of neat to have an ultrasound that didn't show a baby bouncing around in there.  New experience for me.)  And I've also been prescribed two wrist braces to wear while I sleep to help keep my hands in a "neutral" position.  (And I've tried wearing the braces to bed for the last three nights, but somehow, in the middle of the night, I end up taking them off.  While I'm sleeping.  Very odd.)  I'm trying out everything I can in efforts to rid my wrists of this pain. 

I'm hoping to see some relief in the next eight weeks, and I'm cautiously optimistic that I'll feel close to 90% once the physical therapy sessions are over. 

(And, for the record, this is the way a doctor's office should be run.  Attentive staff, clean environment, medical professionals who make eye contact with their patients, and a discussion about payment after they learned my name, not before.  These small things make a big difference in patient experience, and I'd give this PT office a referral any time.)

Posted by Kerri Sparling at 10:29 AM | Permalink | Comments (20)

"So you are here for ..."  the nurse asked, tapping the keys on the computer keyboard and not making eye contact with me.

"I'm here to see if I'd like Dr. NoWay to be my primary care physician.  I'm here to see if I like her, and this office."  I said, already annoyed.  

From the moment I walked into this doctor's office, I was uncomfortable.  The people in the waiting room looked exhausted, like they had been there since birth and had slowly aged and melted into the seats.  The walls looked like they hadn't been painted since 1985, and everything had this damp, dingy undertone to it.  It seemed sad.  Hopeless.  But I had hope that I was judging a book by its cover, and that I could find my new primary care physician here.

"Yeah?" said the receptionist.  "You need to fill out these forms and then sit over there until we call you."  She handed me a clipboard - still without even looking at me - and dug a pen out from underneath a pile of papers.  "And I need your license and insurance card.  Like now."

Oh boy.  I gave her my license and insurance card, and sat to fill out the forms.  Even though I had barely walked through the door of this place, I knew it wasn't the right fit.  

I'm an empowered, engaged patient, but I'm also a picky patient.  Since taking my health into my own hands (namely, once my mom stopped coming on my doctor's appointments with me), I definitely have a choice in who is part of my health care team.  Just because they're covered by my insurance or recommended by another doctor doesn't mean they'll be a good fit in my life. I need to be able to talk to this person.  I need to feel comfortable being a little vulnerable.  I need to feel like they care, even just a little bit, about more than just billing codes.

Initial doctor visits are like first dates - you go on them to see if you want to see them again.

And this doctor's office wasn't getting a second date.  Because the following statements were uttered during the course of my visit (by the doctor, the nurse, and the receptionists):

• "You have diabetes?  Maybe after you lose the baby weight, you'll be off insulin?"
• "For your wrist pain, you can take Advil three times a day."  (Never mind the whole diabetes/kidney thing, right?)
• "Your license photo looks new."  (How is this relevant?)
• "You test your blood sugar?  Like once or twice a week?"
• "You were diagnosed with diabetes as a kid?  But you went on insulin only for your pregnancy, right?"
  
• "An insulin pump?  That's when your sugar gets really, really bad.  It must hurt a lot to wear that."
• "You're here to interview me?  Are you a reporter?"   ("No, I'm a potential patient.  Stress on the potential part.")
• "I can't find your name on your insurance card."  (My response:  "It's there on the card?  Next to where it says "Name?")
  

Dr. NoWay herself was very nice, and I think she had her head on straight.  But honestly, it was the staff who worked in her office who put me over the edge.  They were rude, uninvolved, and uninterested, across the board.  And I mentioned this to Dr. NoWay.

"I have to admit - I'm on the fence about whether or not I want to have this office handle my primary care.  You seem like a good doctor, and I feel comfortable with you, but - and I'm wicked embarrassed to say this - your staff seems like they are on the moon.  They can't find my name on my insurance card?  Come on!  How can I feel confident that they'll take your medical direction and process it properly for me?  Their inattentiveness could result in a screw up for me.  And I'm not willing to take that risk."

Dr. NoWay explained that the office had recently experienced a shift in staffing, and that everything was a work in progress.  And I understand that.  I have empathy for that.  But I fear that, too.  I'm fortunately accustomed to clinics like Joslin and Beth Israel, where people have their ducks in a row.  I don't worry about the competency of the people answering the phone or scheduling appointments.  I don't feel weird giving them my home address or my social security number (which is something I felt odd sharing with this PCP office - can't explain why).  This new PCP place wasn't cutting it.  I definitely can't manage my health at a place where I feel uncomfortable and insecure about the care I'll receive. 

And it's not just the Joslin Clinic that's been awesome - my medical team in Connecticut was new to me, but ended up being awesome.  Dr. CT was fantastic, and so was her staff.  But I did have my fair share of Dr. Idiots.  It's part of the health care management process - weeding through the mess of doctors to find one that fits with both your personality and your medical needs. Every medical relationship has ups and downs, but it has to have more ups to be effective in improving my health.

As a chronic illness patient, and someone who doesn't feel shy about requesting competent care, I think interviewing doctors is essential.  We spend a lot of time managing our medical conditions - we shouldn't have to waste any time wishing we were seeing a different doctor. 

The search for a local PCP continues.  But I did see a Physical Therapist that was a very different experience ... more on that Monday.

Posted by Kerri Sparling at 10:14 AM | Permalink | Comments (41)

Yesterday, I was up in Boston proper for a meeting of health activists from the WEGO Health community, brought together as part of a panel of patients who were willing to share their perspectives with Pharma.  My fellow panelists - Alicia Staley, Rosalind Jaffe, and the diabetes community's own Karen of Bitter-Sweet Diabetes - and I talked with a group of representatives from Pharma who had questions about getting involved in the social media space.  (Did you know Pharma wants "in" on the social media space?  Can you tell?)

The discussions were extensive, and we talked openly about what we, as patients, thought Pharma was doing "right" and then our opinions on what was missing from the social equation.  The WEGO Health moderators provided a few questions to the panelists prior to the panel, and my answers were sent off a few days earlier, while BSparl was taking a nap. (Which means I was too exhausted to craft up fancy answers and instead blurted out knee-jerk responses, which were included verbatim in the slides.  Which makes me reconsider using the "draft" option of my email to preserve mine and everyone else's sanity.) 

Here are the questions we were sent, and my answers:

What rules of the road should companies follow when they engage your communities online?

• Always be authentic (aka don't be a big, fat liar)
• Do not judge the actions of online communities (see also:  "Diabetes Police*")
• Contribute to the conversation, don't just try to sell us stuff
• Don't fear the blogosphere:  Show us your face!

What health or pharma company social media efforts are resonating with your community online? [I don't speak for "the community," so I instead listed efforts that resonated for me, personally.]

• Johnson & Johnson (specifically, the JnJ YouTube channel and Animas)
• WEGO Health (not sucking up - they actually help patients attend conferences)
• Roche (Social Media Summit, Twitter acct with actual faces)
  

What would you tell companies to encourage them to support your communities online?

You need us.  In so many ways.  So come talk to us.  We want to hear from you.  Also, bring cookies.  (And with this slide, the WEGO crew had included a photo of some lovely chocolate chip cookies.  I appreciate being humored.  I also love cookies.)

Pharma isn't the big, bad wolf.  The industry as a whole gets a bad rap because there are some dodgy apples in the bunch that ruin Pharma's overall image.  I think that same principle applies to just about everything (there are always jerkfaces in certain groups).  I think that Pharma companies attending events in effort to engage with patients is a good thing. 

"But they only want to profit off our disease.  They want to tap us because they make money off us." 

Good point.  But while that is true on some levels, it's also true that just having them in the room with us is a start.  Because if they're in the room, they can hear us. And if they hear us, they just may start to listen.  

And damnit, there is a chance of cookies.

*  I hate being policed, especially by people who don't know me.  I can take criticism well, and constructively, but I do realize there is a certain risk that comes with putting my personal health information out there for all to see and analyze.  That kind of disclosure opens me up to a lot of scrutiny and judgment.  Part of what I wanted to convey to the attendees of this discussion was that judging people within these communities is a crap idea.  Unless they know what it's like to live with these illnesses, don't just pop in and make disease management suggestions or judgments.  And definitely don't jump in and try to link to your products.  Support and accurate information go a very long way in making a difference in our health and lives.  Don't rag on the diabetic who clamors for cookies.  ;)

Posted by Kerri Sparling at 08:55 AM | Permalink | Comments (8)

I spent the last few days at the ePatient 2010 conference in Philadelphia, and one of the terms (surprise, surprise) that kept coming up was "epatient."  I've written about my take on the term "epatient" before, and was surprised to hear that there was a negative feel to the term, like it was overused.  And overplayed.  (Like Chumbawumba.)  

I turned to Facebook to see how my friends felt about the term, and the feedback was instant and mostly positive.  Facebook buddy and fellow ePatient 2010 attendee, Susannah Fox, connected with me after seeing the discussion and sent me a link to a discussion on her blog about the word "epatient" and how that movement is going through some growing pains. 

Far be it for me to be ahead of the curve (I just started tight-rolling my jeans), but I'm still comfortable with the term "ePatient."  I find it to be empowering - another "e" word - and having it as part of my identity makes me feel like I'm part of a very strong, very forward-thinking community.  Having lived with diabetes for ... forever, it seems, I am so appreciative of the changes taking place in patient care.  I like the broad stroke of support that the Internet provides for patients, and the power of connecting outside of the perimeters of your zipcode makes an enormous change in how I view my health.  As I said at the conference, "People with diabetes take drugs, test their blood sugar, watch their food intake, but emotional support is just as crucial as the insulin we take.  For me, it's part of my health."  Empowered, electronic, encouraged, engaged ... ePatient.

My friends in the Facebook circles had varying perspectives, but most of them seemed to feel empowered to be using online resources to manage their health - or the health of their loved ones.  Here are a few responses:

With all of these varying discussions about the term "ePatient," how do you feel that you fit into the mix?  Do you think the term is overused and now weak as a result?  Are you empowered by the term "ePatient?"  Or do you have an entirely different opinion to share?  Are YOU an ePatient?

Posted by Kerri Sparling at 10:34 AM | Permalink | Comments (6)

For the last year of my life, it's been a monthly visit to the endocrinologist, and then once I was pregnant, the dam broke loose and I basically had a cot set up at the Beth Israel/Joslin pregnancy clinic.  Oh yeah, and then I spent a month at the hospital while waiting for BSparl. 

I have doctor burnout, big time.

So I'm done with doctor's appointments for at least a few weeks.  Mentally, at least.  (Because there is another one scheduled for August - WTF?)  But last week, I had my last appointment, for a while.  I was up at BIDMC for my "six week follow up" appointment (which took place seven weeks after the birth), and I met first with my endocrinologist. 

"How are you feeling?"

"Tired.  That's normal for a new mom, right?"

"Exhausted is more normal," she said, as she opened up my file on the computer.  We ran through my vitals, going over the medications I'm taking, the ones I'm not bothering with anymore, and how my blood sugars have been reacting to new mommyhood.  

"I've had some really good days, but the bad days are like epically bad.  Like 300's and 400's kind of bad," I said, looking at the floor.

"We want to prevent those highs, and the lows that either cause them or follow them, but you aren't the first postpartum patient I've seen who is hitting these kinds of numbers.  It's normal.  You'll even out," she said.

My basal rates seemed to be okay, but we did some tweaking to my afternoon/evening insulin:carb ratios (going from 1:12 to 1:15, which is math beyond my capacity).  Overall, I've had some nasty numbers, but my endocrinologist reassured me that my A1C wouldn't be too awful, because I wasn't letting any of those numbers ride.  (And when she called me on Monday to let me know what my lab work results were, my A1C was sitting comfortably at 7.0%.  Some people might call that too high, but I'm calling it a wicked victory for me.)

After I met with my endo, I was off for my exam with the OB/GYN.  Not to be terribly TMI, but I can't stand the pelvic exams.  They are unholy and cruel and a very strange way to spend an afternoon.  (Not only that, but I can't figure out why I'm not allowed to greet the doctor while I'm dressed.  No, they send her in only after I'm clad in the awkward paper johnny, with my regular clothes balled up on the chair near the examining table.  And it was the first time I had met with that specific OB.  "Nice to meet you, too!  This is my floppy body.") 

Thankfully, I appear to be healing well, both inside and out.  My c-section incision doesn't hurt anymore, and even though my lower abdominal muscles are currently useless and squishy, I am recovering like a "normal person."  (Read:  Not a diabetic who has seen 400's three times in the last eight weeks.  Nasty.)  There is still a little bit of light bleeding (not from the scar, silly), but my doctors told me the bleeding can last as long as nine weeks.  (Yay.)  The scar is shorter, and a light pink color as it attempts to heal.  I can't see the staple holes anymore, and when I spy the scar in the mirror, I don't want to jump out the window due to grossed-out'ed-ness.  That's progress!

So I'm cleared for "normal life," which includes being able to pick up the carseat while the baby is in it, which means I am no longer tied to my house.  THANK GOD, because I swear I was hearing the cats talk about me - in ENGLISH - which means my mind was starting to leak out.  Onward!  To normal life!

(Normal life - ha!  That's redefined with each messy diaper and baby smile.)

Posted by Kerri Sparling at 11:55 AM | Permalink | Comments (9)

I've received a lot of emails about the how diabetes will be handled during the actual "birth" of Ms. Bsparl, and while I won't have all the details until it's all over with, I do have a few answers for now.  I talked with my OB (who will be performing the c-section) and my team at Joslin about some of the details.  This might be a detailed, kind of boring post, but I wanted to make sure I'm answering all the questions possible! 

Here's what I know so far:

On Wednesday night, an IV will be "installed" in preparation for the insulin drip.  I'll still have my insulin pump on, though.  As of midnight on Wednesday, I won't be able to eat anything from that point until post-surgery, so the IV will be at the ready in case I go low during the course of the night.  In the event of a low blood sugar, my team will do one of the following:  suspend my insulin pump, administer glucose through the IV, or potentially allow me to drink apple juice, depending on the circumstances. 

The c-section will be first thing in the morning (8 am), so the night before will be spent checking my blood sugar with the glucose meter every 30 - 45 minutes to ensure the tightest, steadiest control possible.  In my circumstances, I plan to keep the Dexcom connected throughout the night, too, to help with that goal.

The morning of the c-section, I'll get up wicked (pissah) early (5:30 am, I think) and I'll rip out my insulin pump and remove the Dexcom sensor.  The nurses will hook me up to the insulin drip and my blood sugar will be monitored - wait, strike that.  Stalked.  :)  I'll be hooked up with the drip, etc by 6:30 am and up to the delivery room.

We'll move into the operating room and my blood sugar will be monitored stalked by the Joslin team while the OB/GYN team prepares to deliver my baby girl.  Chris will be in the waiting room while they administer a spinal epidural (Do not Google this, because it will make you cringe.  I made the mistake once of Googling it.  Never again.  It made me want to give birth orally.) and then they will ensure that my lower half is numb and ready for surgery.  Chris will scrub in and be brought in to the room, where he'll be situated up near my head and the surgery will begin.  My team said that Chris is welcomed to hold my meter and test my blood sugar at our discretion, and the Joslin team will be doing the same using their meter or mine, depending on our preference.  But if I feel nervous about going low, etc, I am able to keep tabs on my own numbers. 

During the course of the surgery, I'll have a regular IV in for fluids, etc, and then the insulin drip will be combined with a glucose drip, the contents of which can be adjusted based on my blood sugar needs.  So if I start to spike, they can increase the insulin titration.  If I start to drop, the glucose can be turned up.  All of this is handled by the Joslin team, so my OB team can concentrate on BSparl's escape.

According to my doctors, the whole c-section will take about an hour, from start to finish.  Bsparl should be in Chris's arms by 8:30, and I should have all my pieces back together again by 9:00 am.  I'll be brought to the recovery room and Chris and BSparl will join me soon thereafter, barring any issues.  The insulin/glucose drip will remain in until I'm able to eat something, at which time the pump will be reconnected (by me), and after an approximate 30 minute overlap, the insulin drip will be removed. 

The Joslin crew told me that my postpartum insulin settings on the pump will be a whisper of what they were during the pregnancy, and about a third of what they were pre-pregnancy.  At this stage, they're assuming that I'll jump down to a midnight to midnight basal rate of 0.3u, an insulin-to-carb ratio of 1:20, and a sensitivity factor of 1:80.  (My pre-pregnancy basals were more around the 0.4 - 0.6u range, an I:C of 1:10, and a sensitivity factor of 1:55.)   And once I'm breastfeeding, all bets are off as to how that activity could affect my blood sugars.  Only time will tell. 

So that's the low-down on how the diabetes, at least, will be handled during delivery.  I don't want to think too much about the surgery itself, because it freaks me out.  But handing over all of my diabetes control also has me a little tweaked.  After over 20 years of doing it myself, it's hard to grasp the concept of "let someone else handle it entirely."  But I know I'm in capable hands with Joslin, and I know that my focus needs to be on the baby. 

She's worth every hurdle that we, as a family, have overcome to make it to this point.

Because at some time during the whole ordeal, her little teeny cry will cut through all the noise, and in that moment, I'll become a mom. 

Posted by Kerri Sparling at 10:22 AM | Permalink | Comments (65)

Little on the down side today, thanks to having just marked one week "in" and with still two to go.  What the hell is there to write about, from the mind-numbing confines of my hospital bed?

At the moment, BSparl and I are hooked up to the fetal monitoring system, and I can hear her heartbeat pumping along like a rhythmic Clydesdale and can see the movements of her little 5lb, 5oz body being tracked on the graph.  It looks almost seismic, like a BSparl earthquake.  

They haven't checked the protein levels in my urine in a day or two, but things appear to be holding steady.  Blood pressure is climbing ever-so-slightly, but monitored constantly, and there's room for titration in my Labetalol medication (read:  they can give me more of that crap).  Still rockin' the heparin injections twice a day (hate) and still not sleeping through the night thanks to the monitoring.  (Which I understand the necessity of, but it's not making for "relaxing bed rest."  Bed rest is a misnomer.  This is more like jail where the wardens grin and mean well.)

One of the hurdles I'm having a little trouble with is the diabetes management aspect of things.  The Joslin team comes by once a day to review blood sugars and make suggestions, and they are the experts in all-things diabetes.  However, I am the expert in all things specific to MY diabetes, so I've been working hard to achieve a tolerable blend there.

For example, one of the (very nice, very knowledgeable, mind you) endocrinologists had some commentary about a post-prandial blood sugar of 137 mg/dl that I had two days ago.  In my mind, 137 mg/dl an hour after eating is downright badass, and I'm very happy with it, especially considering that the pre-meal number was 84 mg/dl.  Good control, in my eyes.  

"Well, this is a little high.  We'd like to get this post down."

I don't mean to be rude.  I try to be a good patient, a "patient" patient, and to find that careful blend I had mentioned, the one of my non-medical knowledge and their medical knowledge of diabetes.  But it was 8 in the morning.  And it was the third time I had been woken up by a doctor who wanted to review my goods.  And I didn't agree that 137 mg/dl post-prandial was too high.

"Really?  Too high?  I don't see it that way.  I think that's a number to aim for, especially seeing as how I leveled out to 98 mg/dl at the two hour mark.  That's a respectable peak, don't you think?  Otherwise, I'd be treating a low at the two hour mark."

"Yes, but it should be lower than that."

And I sort of lost my cool.  

"Okay, well how about we all call the FDA and get them to tighten up their requirements for 'what's accurate' to something a little more precise than 20%, and then we can start griping about a 137.  Because for all we know, that 137 mg/dl could actually have been a 110 mg/dl, and then I'm right in the acceptable range, right?"

(I am Kerri's terrible, bedrest-fueled, pregnant rage.)

They agreed that 137 was okay.  And that revisiting my post-prandials after another day of review would be a good idea.  And then the fleet of them shuffled out the door.  I felt bad about blowing off steam, but really - I'm in no way a "perfect diabetic," but these days, I'm running really tight and carefully with my numbers.  Let's remember that the reason I'm having post-prandial peaks is because - oh yeah - I have diabetes?

It's challenging, that feeling of having people take my diabetes management control away from me.  Not that I have all the answers or have it all figured out, but I've been living with this a long time and my own instincts and experience should be as strongly considered as the vast medical knowledge of my new, trusted caregivers here.  I'm no diabetes expert, but I'm pretty well-versed when it comes to "Kerri."  ;)

Eventually, I'll find a way to balance my issues with control while "in captivity," but until then, I may need to vent here a bit.  Because I'm pretty sure they're not reading me. 

... Whoops.

Posted by Kerri Sparling at 12:07 PM | Permalink | Comments (61)

Wait ... coverage can't be denied based on pre-existing conditions?  

According to this New York Times editorial, "The biggest difference for Americans who have employer-based insurance is the security of knowing that, starting in 2014, if they lose their job and have to buy their own policy, they cannot be denied coverage or charged high rates because of pre-existing conditions. Before then, the chronically ill could gain temporary coverage from enhanced high-risk pools and chronically ill children are guaranteed coverage."  

I've always wanted to take that leap and run my own business.  I enjoy working in new media and health care, I like working hard, but what kept me from making a bold move was pure and unadulterated fear.  It was the same fear that caused me to immediately grab my diploma after college and start working at a crappy job two days after graduation, simply so I wouldn't lose my medical insurance coverage.  (I was a bank teller.  I have no math skill to speak of.  Tell me how that career choice was safe for anyone.)  As a type 1 diabetic, medical coverage takes precedence over a paycheck, seeing as how I have never had the option of purchasing a private policy.   (Something about that whole "taking insulin" thing makes insurers squeamish.  What, like taking injections ever kept me from becoming a productive member of the work force?  Yet I'm allowed to pay my taxes.) 

Sometimes, it takes a bold move to force a bolder one.  I left my job last October in pursuit of one thing:  a healthy pregnancy.  The fear that once held me back was replaced by the overwhelming desire for a healthy pregnancy, and Chris and I moved forward without hesitation.  But, of course, we had to make sure there wasn't a lapse in my insurance coverage, and with pregnancy being considered another pre-existing condition, I remained insured by COBRA.  Thankfully, once BSparl is born, we have another plan in place.  But the details of my insurance coverage aren't the focus here.  Nor will they be.

The point is now there are options for people with diabetes.  Or at least that's what I'm hoping.  I've been pouring through the newswires and seeing, over and over again, how pre-existing conditions can't be denied.  Reuters reports that  "Uninsured adults with a pre-existing conditions will be able to obtain health coverage through a new program that will expire once new insurance exchanges begin operating in 2014."  This is in addition to insurers being "barred from excluding children for coverage because of pre-existing conditions."  And I remember when I was a kid and my parents dealt with that very issue after my diabetes diagnosis.) 

Newsweek sheds a little more light on this, stating, "Insurers who offer plans on an insurance exchange will be prohibited from rejecting customers with preexisting conditions or charging them higher rates. But the exchanges won't be mandatory until 2014. In the meantime, people with preexisting conditions will be permitted to enter a 'high-risk pool,' which offers caps on premiums and out-of-pocket spending. Still, there's a catch: only people who have been without coverage for six months are eligible. The rule is designed to stop people from arbitrarily switching from their private insurance plans to the cheaper—but taxpayer subsidized—pools. But it means that people who lose their jobs can remain uninsured for a full six months." 

I don't know enough about the health care reform bill to speak eloquently about the details.  I am only exposed to what the media shows me, and what my research procures, and what pages of the bill I'm actually able to pour through and understand.  And I know that talking politics on the blog (just like talking religion) can be a very tough topic, because PWD have so many varying opinions and stances on these issues.  But I'm a person with diabetes.  And I'm hopeful.  I'm hopeful that this could be the beginning of diabetes not dictating my insurability.  I'm hopeful that people with diabetes will have the option to work in fields that inspire them, not just ones that insure them.  Diabetes has a hold on so much of what we do throughout the day and so many of our choices, and I'm hopeful that the passage of this bill will give back some options.

(Just a quick note:  I posted something on Facebook and the comments are impassioned, but respectful.  So far.  :)  If you are going to leave a comment on this post, you definitely don't have to agree with me or anyone else, just please be respectful.  Or I'll send Siah after you.)  

Posted by Kerri Sparling at 09:09 AM | Permalink | Comments (35)

Yesterday, the mail arrived.  There were catalogs for clothes (mmmm, can't wait until May!), letters from friends, the crappy bills that keep arriving even though we didn't forward them to our new address, and oh yeah, that one bill from my mail order pharmacy.

For a thousand dollars.

Dated January 30, 2009. 

So, being the rational and patient woman that I always am, I ripped up the envelope it came in, cursing under my breath like my temperamental buddy, Yosemite Sam.  Punctuated each tear of the paper with "fricka-frakin' insurance bill dagnabit ..."

And then I called the mail order pharmacy company.

"Thank you for calling Byram Health Care.  Your call is important to us."

That was enough to start pushing me a little closer to flipping out, even though it was just a recording.  My call is important?  How important is my business with you?  You're billing me over a YEAR after whatever happened, happened.  After entering my account number and social security number and date of birth and favorite color and pressing "pound, star, pound" to confirm that yes, John was indeed my favorite Beatle, I finally got a human being on the phone.

The woman who answered was very nice, and it's not her problem that I was receiving a bill for something from January of LAST YEAR.  So I was as patient as I could be.

"I just received a bill, dated January 30th, 2009, stating that I owe over a thousand dollars for pump supplies.  Can you help me solve this problem?"

She put my information into the system and pulled up my record.  After a quick discussion about the invoice number, she launched into a speech that sounded so well-rehearsed, it scared me.

"This claim was under review as of June 2009, but spans the course of the entire calendar year for 2009.  It has just come out of review and is now being billed to you, as you see there on your invoice.  Your insurance company has denied this claim stating that these diabetes supplies aren't covered under your DME clause and therefore you are responsible for the remaining balance for these insulin pump reservoirs.  In the event that you disagree with this statement, you'll need to contact your insurer and have them contact us to resubmit the claim."

"Oh hell yes, I disagree.  So I need to call the insurance company and pass the buck back to them?"

"Yes.  Have them contact us with their resubmission of the claim."

"Okay, but confirm this for me - this isn't my problem.  This is an issue between you guys and the insurer, right?"

"That is most likely the case, but you'll need to talk to your insurer."

So I called Oxford Health.  And their guy told me that Byram had submitted the claim to Oxford with incorrect billing codes, forcing Oxford to deny the claims for these supplies.

"Even though you guys approved these items for over three years?  And it's not like anything changed?  So it's just the billing code that was different, and that's not even my fault, yet I'm receiving the bill?"

The guy from Oxford confirmed.  "You need to call Byram back and tell them that they need to resubmit the bills to us with this billing code (and he read off some series of numbers to me, that I feverishly wrote down and then promptly doodled cats around - I was fired up, but still easily amused), and then that should start fixing this problem."

"Okay, so let me confirm.  This isn't my fault.  Or my problem.  I'm not on anyone's 'bad list,' and this is an issue with you guys and the mail order pharmacy, right?"

"That's correct, Mrs. Sparling."

"Fantastic.  You've been very nice.  I hope we never have to speak again."

And then I called the customer care center at Byram, one more time.  And this is where I almost got into my car and drove to wherever Byram is located, so I could just find this girl who answered the phone and shove broccoli spears up her stupid nose.

After explaining the basics, and after this new girl brought up my account, I said the following:  "This bill I'm looking at isn't really my problem.  That's been made clear to me by speaking with your associate and then the rep at Oxford.  So can you help me out with this billing issue?  I've been told it's a matter of coding, and not an actual insurance denial?"

And this girl actually said this to me.  "Um, so you want me to resubmit this with a new code?"  Big, big sigh.  "I have to resubmit these to your insurance company?  That's going to take a long time."

I snapped.  BSparl kicked indignantly, egging me on.  "You are upset because you have to resubmit the bill because YOU guys screwed up the billing codes in the first place?  You are giving me attitude - you are really out of line with that, by the way - because you have to do your job, only correctly this time?  Honestly?  I'm looking at a bill for $1000 that is the result of a billing code error, not my error.  And the billing codes are from your side of things.  So this is your error.  I am not paying this bill just so you can avoid doing your job.  Right?  I mean, you have to see where I'm coming from."

Big sigh again.  "I'll have to spend tomorrow resubmitting your claims.  You'll need to call back tomorrow."

"That's it?  So you're on this?  And again, this isn't my problem, right?  I don't need to do anything?"

"No.  You don't need to do aaaaaanything."  Drawing out the A-sound, like I was the one not doing my job.

"Great.  Thank you very much for resubmitting those.  And hopefully tomorrow we'll be all set."  

Co-pays are one thing.  Insurance premiums are another.  But being billed a thousand dollars because someone entered the wrong code and now is griping about fixing the error?  That's a surefire way to piss off a pregnant lady. ;)

Posted by Kerri Sparling at 09:12 AM | Permalink | Comments (51)

Last week, I toddled my pregnant self up to the Joslin Clinic for my endocrinologist appointment and an ultrasound with my OB/Gyn.  And as excited as I was about the ultrasound and the opportunity for Chris and I to see our baby kicking around in there (more on that later), I was just as excited about the H1N1 vaccine.

I know. 

I can't believe I'm saying that, either.  Yes, this is the same Kerri who wrote about feeling "eh" about the flu shot a few weeks ago.  But a few things have come to light in the last couple weeks that have changed my outlook on things.

Like the fact that the Joslin Clinic has been riding me about getting this shot because of my high-risk situation, being both type 1 and pregnant.   

Or the fact that every healthcare professional I spoke with at last week's ePatient conference kept asking me, "You are getting the H1N1, right?" and the look of concern when I said, "I haven't received mine, yet."

Or the very scary fact that pregnant women, regardless of any chronic illness, are singled out as one of the highest risk groups out there.  

I'm not one to leap without looking.  But I'm also not one to put my baby at risk if I can help it, so when Joslin said there was an H1N1 vaccine available to me, I jumped at the chance to get it.  Seems like this vaccine, for some completely ridiculous reason, is not being made readily available to people who need or want it, so if there was one available to me, I was taking it.

It was unnerving, knowing they were injecting me with a virus.  A dead one, of course, but still, with all the information circulating out there about the pros and cons of the H1N1 vircus, it's hard to know what's true and what's just speculation.  Or, unfortunately, what's purely fabrication.  In any event, when I heard about a little girl in my home state who, at the age of 12 had being diagnosed with H1N1 and then died from it just a few days later, it was enough to scare me into rapid and determined action.

But even at the Joslin Clinic, I had to jump through a few hoops in order to be viewed as "eligible."  

"No, I'm sorry.  That vaccine is only for patients who are 24 weeks pregnant and up."

"Really?"  I said, my hands against the counter.  "I was told that being 14 weeks and also having type 1 diabetes made me a shoe-in for this vaccine.  It's like my prize for being the in double risk pool.  So there isn't one for me?"

She checked her chart again.  "Type 1?  14 weeks?  Okay, you can have a seat over there and we'll call you in for your injection in just a few minutes."

It felt so odd, fighting for something I wasn't even sure I wanted in the first place.  But I kept thinking about the pregnant women I'd heard about on the news who had died from H1N1.  And then I thought about all the public transit I'd taken in the last few weeks, and my upcoming travel plans for this week.  Did I want to take the chance?

If it was just me, I may have.  I may have waited or put off the shot or taken my chances.  But I'm responsible for this baby.  And when we heard the heartbeat, loud and strong, and saw him (or her) kicking around in there, I knew that I needed to do whatever it took to take the best care possible of my child.  

So they shot me up with the H1N1 vaccine.  Oddly enough, I felt grateful.

And that night, I promptly felt ill and slept for about 15 hours straight, waking only to test, snack, and drink water.   I wasn't experiencing any full-fledged sickness, but the weather was above me enough that I hid out all weekend long, missing any Halloween festivities and instead camping out at home with hot tea, chicken soup, and Kleenex.

Today?  Feeling much better and on my way to speak at a seminar in New Jersey.  But I keep hearing about others who are seeking out the H1N1 and still haven't been able to gain access to a vaccination.  What does it take to get protection when you need it?  How are there H1N1 clinics in some states but not in others?  Are you someone who is trying to get this vaccine but can't?  Or are you avoiding this shot, and why? 

I've already jumped, so my opinion is moot on this one.  I'm pregnant, my doctors told me this was best, and I (for once) listened.  But this issue is getting bigger and bigger, and with diabetes month just getting started here, I want to know how the diabetes community at large feels about this H1N1 vaccine.  

Posted by Kerri Sparling at 08:03 AM | Permalink | Comments (43)

I'm not a good PWD, because when I'm told to get a flu shot, I do whatever it takes to skirt the issue.

"I already don't feel well."
"I don't like needles."
"I think flu shots give you the flu?"
"They never help me avoid getting sick."
"Your mom should get a flu shot."
"No one likes flu shots and they smell." 

But a few weeks ago, I was at Joslin and they were prepping me for the worst that winter has to offer, namely the Regular Flu and then the ever-looming Swine Flu.  I have to be honest - even though I have a lot of faith in my medical doctors and I believe firmly in their fine training (especially at Joslin), I always second-guess these vaccines. 

But this year, with my health under careful watch by the Joslin Clinic and my eye on the prize of good control and good health, I let them coerce me.

"Do I have to get this shot?"

The nurse wrinkled her nose.  "Yes.  But I can't force you.  But yes."

"You mean you can't make me get it but you can guilt the hell out of me until I get it, citing all kinds of studies and risk groups and the benefits of vaccination?"

"Yeah, that's about the bulk of it."

So I rolled my eyes and then my sleeve, letting her inject the flu shot into my shoulder.  

"Next time you're here, you'll want to get the swine flu vaccine, okay?"

"Seriously?  Isn't it the first round of that?"

"Yes, but people with diabetes are on the high risk list, so it's going to be the same recommendation from your doctor as this one."

My response:  "Grumble, grumble."

Last year, I skipped my flu shot because I felt a little under the weather that day and they advised me to wait.  And I didn't go out of my way to follow-up.  The two years prior, I ended up in the line at work on "flu shot day" and received the vaccine, but reluctantly.  I don't like the idea of injecting myself with a dormant virus in efforts to make antibodies. (If that's how it really works ... don't quote me on that.  I'm sort of making this up as I go along.  See also:  not a doctor.) I don't like going out of my way to expose myself to different illnesses.  It just seems counter-intuative.

Am I the only diabetic who is reluctant to get their flu shot?  

Posted by Kerri Sparling at 12:21 PM | Permalink | Comments (65)

I stood there with my best friend as she rubbed her pregnant belly.  The whole waiting room was filled with these lovely women and their round beachball bellies of varying sizes.

And I felt oddly self-conscious with my lack of roundness.

Last Friday was my first official appointment at the Joslin pregnancy clinic.  It's located at Beth Israel in Boston and is a beautiful hospital, different from the Joslin Clinic across the street that feels like home at this point.  I'm not pregnant, and we aren't trying to become pregnant YET, but this appointment puts things into full swing to bring me to a safe level of pre-pregnancy health. 

Sigh.  This all sounds redundant, even to me.  I've talked the Big Talk before.  "Oooh, look at me!  I'm going to really wrangle in my numbers and have an A1C you can bounce a quarter off!"  And I'm all gung-ho for a week or two, armed with my little log book and my good intentions, but within a few days, Other Things start to creep in.  Like work.  And stress.  And getting to the gym.  And social stuff, like hanging out with my friends and going to RI on weekends.  Eventually my good intentions end up in the spin cycle, and my log book starts to gather dust.  My workload piles up.  And my stress levels skyrocket.

I'm so frustrated because I want to have a career.  And I want to have a baby.  (I'd also love some tight control of my diabetes, too.)  These things would be excellent, but it feels like tightly managing type 1 diabetes is a full time job unto itself.  Slacking off is easy, and frustrating, and not healthy for me or any baby I'd like to have.   

But I also realize this is one of my biggest hurdles when it comes to pregancy planning - the whole "sticking with the pre-program."  This becomes more and more obvious to me when I go back and re-read old blog posts where I'm so excited to get back into better control, only to be derailed by those Other Things.  So during the course of my appointments on Friday with the endocrinologist, the registered dietician, and the certified diabetes educator, I admitted my faults freely.

"I need help being held accountable."  

They didn't quite hear me at first.  "We can do some tweaking, and in a month or two, we can revisit your A1C and see if it's lower and then we can give you the green light for pregnancy."

I knew I needed more than that.  I had to be completely honest. 

"Guys, I really need to be held accountable.  I know this sounds crazy and I seem very compliant, but I have trouble following through.  I'm great out of the gate, but I lose steam after a few weeks and I'm at the point where it isn't good enough anymore.  I'm out of excuses.  And I'd really like to join the ranks of those pretty pregnant ladies out there.  Please help me?"

And they listened.  We spent the rest of the day working out a plan for me.  One that will actually make a difference.  One that will get me there.

I'll be in Boston every three weeks until I'm pregnant.  This is a huge commitment but I need to make diabetes a priority without fail.  I want this.  I want to succeed at this more than anything else.  I'll have my blood sugars logged for those three weeks and we (my husband and my diabetes team and I) will all review them together.  Chris is in charge of my meals, in that he'll be helping me plan my day, food-wise, and he'll be counting carbs and measuring things for me. I'll be eating relatively similar items every day so I can manage the trends and control them.  I'll continue to test all the live long day and wear the pump and the CGM, but I'll actually use these devices to their fullest potential, instead of just going through the motions. 

With these appointments spaced just a few weeks from one another, I hope I can stay tuned in to intense diabetes management for three week stints.  Being sent out for three or four months is too much for me.  Obviously, because I burn out well before my follow-up appointments.  I just plain can't pay rapt attention for that long.  But three weeks?  Can I do that?

I have to do that. 

I will do that. 

Posted by Kerri Sparling at 10:44 AM | Permalink | Comments (39)

You have already read some great wrap-ups of the Roche Diabetes Blogger Summit from some of my fellow bloggers - Amy, Manny, David, Gina, Christopher, Bennet (Note: Mr. YDMV's updates are fictional.  Well, mostly.), and Sandra.  I just wanted to chime in with my thoughts and add my photos to the collection.  :)

We met up in Indianapolis on Wednesday afternoon, after I had flown from LaGuardia to Detroit and then to Indianapolis.  (Yes, I took two flights so that I could avoid taking the itsy bitsy plane that Roche originally had scheduled me on.  The travel people at Roche were very patient and understanding regarding my travel issues, and I really appreciate their compassion.)

But apparently my fear of flying wasn't kept within the travel coordinator circle, as several people from Roche mentioned at the dinner that "Some of us even traveled despite our fear of flying," and heads slowly turned towards me, to which my only xanax-laced response was "I walked."  

Good thing I don't mind being laughed at.  Or with.  More on that later.  

I'm no fool - part of what Roche wanted was to be talked about in the blogs.  Hence why they asked many of the diabetes bloggers to visit their headquarters and brainstorm about social networking and Pharma involvement.  But Roche did this right - they paid for our travel, they paid for our hotel, they made us feel as though we were valued guests, and they listened when we offered our opinions.  We didn't travel on our own dime and feel taken advantage of, but instead appreciated.  That's a good start, in my book. 

It was really a groundbreaking sort of event, with Roche having the balls (go ahead and quote me on that, Rodger the Social Media Warlord) to invite a pack of opinionated bloggers into their house to talk frankly about social media and Pharma - specifically, THEIR Pharma.  We talked about ways that Pharma can appropriately enter the social media space without being received by a mob with torches and pitchforks.

In my opinion, Pharma needs to simply embrace the fact that transparency, honesty, and being open to feedback can make a huge difference in how they are perceived by their patient base.  For Roche to sign on to a social networking site by creating a fake profile or pretending to actually live with diabetes, well that's just plain stupid because we'll sniff them out in a second and destroy them.  However, if Roche, or any other Pharma crew, is willing to put a face to their company and leap into social media by saying, "We aren't living with diabetes, but we want to help improve the lives of people living with diabetes - that's why we are here and that's why we want to be engaged" ... that kind of disclosure and transparency will go a very long way.

I gave the example of Albert Chen, a member of the Agamatrix team who, with grace, honesty, and class, joined the diabetes blogosphere with his blog "What Is Diabetes?"  He said, right in his bio, that he didn't have diabetes, but wanted to better understand the community he was working to serve.  That, Pharma companies who are reading this, is the way to work with the diabetes online community.  Get to know us.  See that we are more than just the sum of our co-pays.  Remind us that Pharma has a face, and more importantly, that you remember we are people, too.  

The Roche team didn't always directly answer the questions, but I can understand that "Why aren't strips cheaper" isn't a question that they can answer without sounding like a business.  However, they need to understand, and always remember, that their business is our life.  So while that chasm remains wide, I think this was an important step in beginning to bridge that gap.

Posted by Kerri Sparling at 09:14 AM | Permalink | Comments (7)

Earlier this week, I had a bit of a medical issue.  Painful urination, high blood sugars, and the constant need to pee.  (Ladies, I know you already know what's up.)  Urinary tract infection looming large.  I was livid, because it was the day before I was scheduled to travel for this week's business.

I haven't got time for the pain, so I called my primary care physician, Dr. CT.  "Hi Nurse of Dr. CT!  It's Kerri Sparling.  Listen, I'm pretty sure I either have a kidney stone or a urinary tract infection, and I need to rule it out before I leave for a week-long business trip."

Dr. CT was on jury duty.  Damnit.  So I had to call a local walk-in clinic, instead. 

The clinic was a hole in the wall.  Part of a strip mall structure.  My confidence wasn't high, but my blood sugars were and my whole body was screaming for attention, so I knew I had to follow through.

The receptionist was very nice.  The nurse was even nicer.  They took my blood pressure (110/74), my temperature (98.8) and a urine sample (ew). 

I should have known from the moment the sample cup was given to me that it wasn't going to be a fun visit.  The very kind nurse handed me this  --->

That is not a urine sample cup.  That's like a party cup that you use for lemonade on a hot summer day.  Not for pee.  Oh God. 

And then the doctor came in.  For the sake of anonymity, we'll call him Dr. Idiot.

"Hi.  I'm Dr. Idiot." 

"Hi, I'm Kerri."

"Kerri, I see you are here for pain when urinating.  Are you urinating frequently?  You see, you are spilling a significant amount of urine.  I believe we may have found the source of your troubles." 

He closed his file, proud of himself.

"Dr. Idiot?  On my chart there I wrote that I have type 1 diabetes.  I know my blood sugar is elevated right now, which sucks but at least it's not a surprise.  But that's not why I'm here.  I actually suspect that ..."

He cut me off.

"I think we need to address this first problem.  You are aware of your diabetes, you say?  How many times a month do you check your sugar?  You know, with the glucose machine and the finger pricker?"

If I wore bifocals, it's at this point that I would have slid them down my nose and given him a hard, Sam Eagle-type stare. 

"I test about 12 - 15 times a day.  But the real reason ..."

"You mean a month,"  he corrected me.

"No, I mean a day.  I have type 1 diabetes.  I wear a continuous glucose sensor.  And also an insulin pump.  I'm very aware of my condition, and I'm also very aware that it's slipping out of control today because of this other issue, the pain issue.  Can we talk about that?"

He looked at my chart again.  "So you don't use a meter?"

"Sir, I use a meter.  And a machine that reads the glucose levels of my interstitial fluid.  This is in addition to my insulin pump.  I don't mean to be rude but ..."

Now he gave me a hard look.  "Why the interstitial fluid?  Why not the blood directly?  I mean, you could have more precise readings with the blood."  He picked up my Dexcom from the chair next to me and pressed a few buttons to light up the screen.  (Mind you, he did not have permission to touch it, but I'm again not saying anything.)   

"You mean like a pick line?  I don't know.  I'm sorry.  Ask them?"

"Yes, but it would make much more sense and ..."

I just about lost it.

"I'm sorry.  I didn't come here to talk about that.  I want to talk about the issue I'm here for.  Which is not diabetes.  Or your ambitions to know more about CGMs.  Please can we address what I'm here for?"

"The sugar in your urine."  With finality, he says this.

"NO.  The fact that I think I have a UTI or a kidney stone.  Please.  Help.  Me?"

I kid you not - we went 'round and 'round about this for another ten minutes.  He didn't believe me that I was at least sort of familiar with diabetes.  His ignorance included, but wasn't limited to, the following statements:

• "High sugar causes frequent urination.  Maybe that's why you are peeing often?"  (Not because I was drinking a liter of water per hour to flush my system?  Nooo, couldn't be that.) 
• "Did you have weight loss surgery?"
• "Grape juice also causes high blood sugar." 
• "That thing should really be pulling blood samples.  Pointless otherwise."  (Meaning my Dexcom.)
• "The urinalysis won't be back until Friday, and in the meantime you should start on a regimen of insulin immediately." 
• And also:  "I didn't peg you for a pink girl."  (Are.  You.  Serious??)

The end result, after an escalating argument that involved me yelling, "Stop.  Talking about my diabetes and PLEASE focus why I'm here!" was a prescription for Macrobid that I could elect to take if my symptoms didn't alleviate, and the instructions to call back on Friday for official lab results.

"Thank you.  Really.  Can I go now?"

He at least had the decency to look ashamed. 

I've had some wonderful doctors over the last 30 years, and my health is better for it.  But this guy?  Complete disappointment. 

Posted by Kerri Sparling at 09:42 AM | Permalink | Comments (61)

Earlier this week, I had a bit of a medical issue.  Painful urination, high blood sugars, and the constant need to pee.  (Ladies, I know you already know what's up.)  Urinary tract infection looming large.  I was livid, because it was the day before I was scheduled to travel for this week's business.

I haven't got time for the pain, so I called my primary care physician, Dr. CT.  "Hi Nurse of Dr. CT!  It's Kerri Sparling.  Listen, I'm pretty sure I either have a kidney stone or a urinary tract infection, and I need to rule it out before I leave for a week-long business trip."

Dr. CT was on jury duty.  Damnit.  So I had to call a local walk-in clinic, instead. 

The clinic was a hole in the wall.  Part of a strip mall structure.  My confidence wasn't high, but my blood sugars were and my whole body was screaming for attention, so I knew I had to follow through.

The receptionist was very nice.  The nurse was even nicer.  They took my blood pressure (110/74), my temperature (98.8) and a urine sample (ew). 

I should have known from the moment the sample cup was given to me that it wasn't going to be a fun visit.  The very kind nurse handed me this  --->

That is not a urine sample cup.  That's like a party cup that you use for lemonade on a hot summer day.  Not for pee.  Oh God. 

And then the doctor came in.  For the sake of anonymity, we'll call him Dr. Idiot.

"Hi.  I'm Dr. Idiot." 

"Hi, I'm Kerri."

"Kerri, I see you are here for pain when urinating.  Are you urinating frequently?  You see, you are spilling a significant amount of urine.  I believe we may have found the source of your troubles." 

He closed his file, proud of himself.

"Dr. Idiot?  On my chart there I wrote that I have type 1 diabetes.  I know my blood sugar is elevated right now, which sucks but at least it's not a surprise.  But that's not why I'm here.  I actually suspect that ..."

He cut me off.

"I think we need to address this first problem.  You are aware of your diabetes, you say?  How many times a month do you check your sugar?  You know, with the glucose machine and the finger pricker?"

If I wore bifocals, it's at this point that I would have slid them down my nose and given him a hard, Sam Eagle-type stare. 

"I test about 12 - 15 times a day.  But the real reason ..."

"You mean a month,"  he corrected me.

"No, I mean a day.  I have type 1 diabetes.  I wear a continuous glucose sensor.  And also an insulin pump.  I'm very aware of my condition, and I'm also very aware that it's slipping out of control today because of this other issue, the pain issue.  Can we talk about that?"

He looked at my chart again.  "So you don't use a meter?"

"Sir, I use a meter.  And a machine that reads the glucose levels of my interstitial fluid.  This is in addition to my insulin pump.  I don't mean to be rude but ..."

Now he gave me a hard look.  "Why the interstitial fluid?  Why not the blood directly?  I mean, you could have more precise readings with the blood."  He picked up my Dexcom from the chair next to me and pressed a few buttons to light up the screen.  (Mind you, he did not have permission to touch it, but I'm again not saying anything.)   

"You mean like a pick line?  I don't know.  I'm sorry.  Ask them?"

"Yes, but it would make much more sense and ..."

I just about lost it.

"I'm sorry.  I didn't come here to talk about that.  I want to talk about the issue I'm here for.  Which is not diabetes.  Or your ambitions to know more about CGMs.  Please can we address what I'm here for?"

"The sugar in your urine."  With finality, he says this.

"NO.  The fact that I think I have a UTI or a kidney stone.  Please.  Help.  Me?"

I kid you not - we went 'round and 'round about this for another ten minutes.  He didn't believe me that I was at least sort of familiar with diabetes.  His ignorance included, but wasn't limited to, the following statements:

• "High sugar causes frequent urination.  Maybe that's why you are peeing often?"  (Not because I was drinking a liter of water per hour to flush my system?  Nooo, couldn't be that.) 
• "Did you have weight loss surgery?"
• "Grape juice also causes high blood sugar." 
• "That thing should really be pulling blood samples.  Pointless otherwise."  (Meaning my Dexcom.)
• "The urinalysis won't be back until Friday, and in the meantime you should start on a regimen of insulin immediately." 
• And also:  "I didn't peg you for a pink girl."  (Are.  You.  Serious??)

The end result, after an escalating argument that involved me yelling, "Stop.  Talking about my diabetes and PLEASE focus why I'm here!" was a prescription for Macrobid that I could elect to take if my symptoms didn't alleviate, and the instructions to call back on Friday for official lab results.

"Thank you.  Really.  Can I go now?"

He at least had the decency to look ashamed. 

I've had some wonderful doctors over the last 30 years, and my health is better for it.  But this guy?  Complete disappointment. 

Posted by Kerri Sparling at 09:42 AM | Permalink | Comments (61)

Last week I had the opportunity to attend a summit regarding government healthcare and the impact on patients and doctors in Washington, DC.  This event was put together by Dr. Val Jones of the Better Health network, and played host to some of the best of the medical blogosphere - including Kevin MD, Dr. Alan Dappen, Dr. Wes, Dr. Rich, Dr. Rob, Kim from Emergiblog, Mother Jones RN, Dr. Jim Herndon, Edwin Leap, Valerie Tinley, and Evan Falchuk.

Me (Kerri), Mother Jones, Kim from Emergiblog, and Valerie Tinely

It was a lively discussion about government healthcare and how many of the people in the room were against it - including Congressman Ryan, who provided the keynote for this session.  Evan Falchuk, Mother Jones, and I were busy Twittering the session.  (For a full transcript, click here.)  But I'm not a doctor.  Or a nurse.  There are no initials after my name.  I'm a patient. 

However, being a "patient blogger" doesn't make me the only patient in the room.  Every doctor and nurse on that panel has been a patient at one time or another.  It's something we all are.  This makes healthcare something we all need to care about.  Hence, patients first. 

The doctors on the panel were discussing how primary care physicians are a dying breed, with fewer and fewer new PCPs joining the medical workforce every year.  Many doctors were also talking about how government healthcare could provoke a healthcare system of "rationing," where Americans don't receive the healthcare they need but instead the healthcare that is allocated to them.  And how a government healthcare system could cost the American public a bundle for inadequate care.

Then there were comments about the current healthcare system, how it's running the economy into the ground and people are underinsured.  I can attest to being a member of the working class, with insurance, yet spending plenty out of pocket for my medical needs.  What good is coverage when it doesn't cover? 

Kim made the comment that she called Blue Cross to "talk to someone," and asked, "What would make you outright deny an insurance policy?"  Blue Cross responded, "Insulin-dependent diabetes."  This comment came hot on the heels of a discussion about "good health habits" earning a lower insurance premium.  But as an insulin-dependent diabetic, would I be penalized regardless?  Even though I eat well, exercise regularly, and have a healthy BMI, could my need for insulin or my A1C level end up putting me in a different cost tier?

And I'm sitting there, a type 1 diabetic patient and a health blogger, completely unsure of what to think. 

I can't claim to be up on every last minute detail of the proposed healthcare system.  I mean, Congressman Ryan even admitted that no one has read the bill fully (which was an admission that blew my mind).  But I do know that I've been denied for a private health insurance policy for years (and life insurance as well), and that even with insurance, I've had to fight for coverage for test strips, insulin pumps, CGMs, etc.  I see my endocrinologist at least three times a year and my primary care physician at least every 180 days, in addition to any well-woman visits, dental appointments, and emergency situations.  I sometimes think that a system of universal coverage would be such a blessing for people with chronic illness because we'd have insurance, but now I fear that we still wouldn't have the coverage we need.

"Is healthcare a right or a privilege?"  One of the panelists asked during the session.  The response on Twitter was diverse and educated, but I'm still not sure.

I'm confused.  I've read a lot of lies, a lot of half-truths, and some of what may be the truth, but it's still tangled up in agendas.  I'm hoping that you guys can help set the record straight for me, or at least stop it from spinning for few minutes.  What is the truth about the proposed healthcare system?  How will it affect those of us with chronic illness? 

And what can I do, if anything, to change the outcome?

Posted by Kerri Sparling at 10:55 AM | Permalink | Comments (25)

So yesterday I went to the orthopedist for this wrist mess.

I was all, "I've been wearing the brace and I stopped lifting at the gym and have generally been taking it as light as I can, but no improvement."

And he was all, "Well, we looked at your x-rays from today and your radial and ulna bones are in perfect position, so it does appear to be a tendon issue and not a bone issue."

And I was all, "That's good, right?"

And he was all, "Yeah.  So let's talk about options.  We can move with the brace for another month, or you can do physical therapy, or you can do surgery."

And I was all, "Hmm.  Well the brace isn't helping yet.  And I don't want surgery.  Let's do a cortisone shot and follow up with physical therapy?"

And he was all, "You're an educated patient.  Okay, we'll do a very small shot today and see how that works for you."

So I sat down in a chair in his office and he moved a small table towards me for me to prop my elbow up on.  He left for a minute and then returned with a small bottle, a cotton swap and injection prep wipe, and a massive needle.

And I was all, "Whoa, that's a big needle.  Do you put the whole thing in?  That would come right out the other side of my hand!"

And he was all, "But you do needles every day, don't you?  This should be okay with you."  

And I was all, "Irony, eh?  I hate needles that I'm not controlling.  And that mega-needle?  Scares me."

And my blood in my face was all draining, so I looked white as a sheet.

He was all, "You're going a little pale on me.  Are you okay?"  He swabbed my wrist and shifted my arm around until the proper injection area was exposed.

And I was all, "I'm okay, I'm just not going to watch, okay?"

He nodded.  And the needle was all of a sudden embedded into my wrist and the pressure of the cortisone being injected made me squirm instantly.

I was all, "Ow."

He was all, "Just a few more seconds and I'll be done.  And ... you're done.  You okay?  Do you need to lie down?"

And I was all badass:  "Nah, I'm good.  I'm just going to sit here for a minute while you explain what happens next and I pretend to listen fully despite the pain."  I smiled.  But winced.  Sort of at the same time. 

And he was all, "Elevated numbers for a few days ... increase basals with your endo's help ... keep wearing the brace ... it's going to hurt where I did the shot tomorrow, but you should feel real improvement by about this time next week ... if you don't, we'll want to do that physical therapy and consider maybe another shot depending on how you feel ... you'll be okay ... hey, are you okay?"

And my color was all returning, but slowly.  We finished up, and I tested.  155 mg/dl.  Okay, a little higher than the 114 mg/dl I walked into the doctor's office at, but it must have been a stress bump.  I didn't want to fool with my basals until I was sure that the cortisone would make me high, so I waited a few hours before doing some tweaking

In the course of six hours, I went from 155 to a steady stream of 190 - 240 mg/dl numbers.  I tested for ketones and - low and behold! - the little stick went light purple on me.  Small ketones, prolonged highs, and the pain from the actual shot set in around 8:45 pm.  This morning, I woke up at 213 mg/dl and even after an aggressive bolus, I'm still cruising in that general range.  Basals have since been cranked to 150% and I'm both wearing the Dexcom and testing every hour.

The ketone thing is what's throwing me for a loop.  I hardly ever throw ketones - why now?  I drank a lot of water, ate some carbs, and still had the ketones this morning.  (Poor Chris - I asked him to test himself for ketones because I was convinced the Ketostix weren't working right.  He was all, "Um, I'm negative."  And I was all, "At least I like the color purple.  Blaaaargh.... ")

I hope this was the right decision.  I'm desperate for my wrist to heal.  The doctor said this pain and the highs could go on for 3 - 7 days.   

And I was all, "This sucks."

Posted by Kerri Sparling at 10:45 AM | Permalink | Comments (23)

My health management plan is both proactive and reactive.  I am proactive by taking steps every day to not only be healthy for 24 hours, but for decades to come.  I understand that monitoring, eating healthy, exercising, and seeing my medical team often helps keep my diabetes tuned up and keeps me tuned in.  I understand that efforts now will hopefully keep me healthier later. 

I'm reactive to my blood sugar bounces, testing as often as I can and responding with insulin, exercise, food, or some dizzingly varying combination of both.  I'm reactive to any aches and pains that pop up unexpectedly, like a wrist pain or an ocular migraine. 

It's good for me to be both proactive and reactive.  This mentality helps keep my health, though already slightly compromised by a diabetes diagnosis that was out of my control, at the best level I can achieve.

On paper, and in my mind, I'm a "good patient."  Trying to be, anyway.

So why are so many "good patients" broke?

Being proactive with healthcare isn't part of the natural American view of health.  American patients seem to be penalized for staying on top of their conditions.  For example, I had a dental cleaning on Monday.  My second one this year.  Both my dentist, my primary care physician, and my endocrinologist have told me that good dental health is crucial not only to my diabetes management but to my overall health.  So, on their recommendation, I have three - four cleanings a year.

Yet only two are covered by insurance.  So on Monday, I paid $105 out of pocket and unreimburseable to my dentist's office.  This doesn't make me frustrated with my dentist, but with the healthcare system that would be more inclined to have my teeth drilled than cleaned.  Yet, I'll keep doing this because it's what's best for my health.

And today, I went to the orthopedist to have my wrist examined.  And the doctor - very nice guy with a good bedside manner - examined my wrist and after about a minute with me, recommended a wrist brace, xrays, a cortisone shot, and surgery.  In that order.

"Even though I'm 99% sure I'm not pregnant, I am not on the pill and am only using barrier methods of birth control.  Can the xrays wait until I'm positive I'm not pregnant?"

"Sure.  We can wait for the shot for then, too.  And we can discuss surgery at that time as well.  You can come in really quickly next week once you're sure you aren't pregnant and we can do the xrays.  It will take three minutes and you'll be on your way."

"Okay.  Thanks.  So will I be charged for a copay next week, then?"

"Yes.  Of course."

"Wait, really?  Even though it should be part of this visit?  No one mentioned xrays to me over the phone, and even if it was something I should have anticipated, I didn't.  So now I'm being charged double for being proactively cautious and protective of a potential but highly unlikely pregnancy?"

"Well, yes.  Unfortunately.  I have to charge you for next week's visit, no matter how short.  Otherwise, it would be insurance fraud.  And we can discuss surgery, as well."

Great.  So now I'll be out $50 for what should have been one visit for only $25.  I'll be charged extra for xrays and potentially a cortisone shot, but the surgery would be 100% covered.  (Yes, I already called my insurance company to find out what's what.) 

Why, Insurance Company, are you so against proactive care?  Why do I need to pay more for a brace or a shot or an extra visit when you're more content paying for a several thousand dollar surgery instead?  Not enough bang for your buck?  Why do you fight me tooth and nail against coverage for a continuous glucose monitoring device?  Is my life not worth the investment to keep my legs on instead of paying 100% to amputate them in a few decades?  I know I'm expensive as a chronic disease patient, but I'm healthier than 85% of the people I know.  I eat well, I exercise regularly, and I am on top of my disease.  Yet you deny me life insurance, you won't let me purchase a private health insurance policy, and you would rather see me on an operating table than taking up a doctor's time in an office visit.  (And it's not like I'm taking up more than 5 - 7 minutes of a doctor's time, because that's about all we get, on average.  Pathetic.)

I am ashamed sometimes to admit that the reason I don't have the money to go out is because I spent it on a dental cleaning or a follow up visit to my doctor.  I'm embarrassed that proactive patients are the ones going broke.  I hate the healthcare system, and its backwards way of punishing me for thinking ahead and celebrating any decisions to let things deteriorate until I require more "procedures" than "maintenance."  Where's the love for the proactive patient?  Our reward is being charged double?

My checkbook will be $200 lighter next week, and I'm not even "sick."  I'm trying so hard to avoid becoming "sick."

What will my healthcare cost if I ever truly am?

Posted by Kerri Sparling at 12:28 PM | Permalink | Comments (31)

I can't take it anymore.  This wrist thing is making me crazy.

Since my "diagnosis" with tendinitis in February, I've done plenty of attempted cutting back on repetitive movement:

I've been trying to use the computer mouse less.  Fat chance, seeing as how my day job is extremely computer intensive, and blogging also uses - wait for it - the computer.

I bought a Bamboo.  Yet I haven't had more than 15 minutes to sit down and learn how to use it.  So it's still in the box.  Sitting there.  A waste of money and good intentions.

I took Advil for several days.  Actually, I took it for almost three weeks, and then I heard about the kidney + Advil conundrum.  But also, I didn't like the fact that once the Advil wore off, I was back to being in pain.  Seemed like a bandaid.  I want to fix this.

I sleep with a wrist brace on.  What's sexier than your wife climbing into bed, wearing a pump, a Dexcom, multiple attached sensors, and a wrist brace?  All I'm missing is the damn headgear.  And I'm wearing the brace for more than just sleep - I wear it when I'm driving, as often as possible at work, and if I ever watch television for more than 10 minutes.  (Rare, but it happens.)  

I stopped weight training.  Before my wedding, I was doing as much resistance training as possible.  I liked the effects it had on my body.  But since February,  I've had to stop weight training completely because I can't lift anything up.  I can't do tricep dips.  I can't jump rope.  I can't even hold weights while doing lunges because of the stress on my wrist.  So I've been doing more cardio than usual and gazing w(r)istfully at the free weights.

I can't carry grocery bags.  My wrist explodes with pain when it grazes my desk or the couch or the kitchen counter.  I can't even throw Siah off my chest when she's trying to sniff me to death at night.  (That cat is getting fat.)  I'm not one to complain about physical discomfort, but this wrist pain is beyond tolerable.   

I feel like a 90 year old woman. 

So I went to the Twittersphere and pinged my question out to them in 140 characters or less:  "Tough workout. Wrist issue (tendinitis) is not healing. Has anyone had this before? How did you fix it? V. frustrating."

Responses ranged from "Advil and rest!" to "Physical therapy and a brace!" to "Cortisone shot!"  Apparently, I'm not the only new media-type to have grappled with this issue before.

I called my doctor this morning and explained the situation.  After she realized that, despite my attempts to ease up on the wrist stress I still wasn't on the mend, she recommended I speak with an orthopedic practice and get an appointment.

"They may want to give you the shot that day, so be prepared, diabetes-wise."

"This could make me go high for a few days, right?"

"It depends.  They won't give you much in the injection, and it's a localized dose, so you may not see more than a premenstrual-style spike.  But you might see more than that.  It depends on a lot of factors.  The orthopedist can help answer those questions more specifically."

(This is EXACTLY why I prefer working with a primary care physician who is comfortable with specialists.  She knows that she can cover my basic needs, but she's quick to refer me to doctors who can handle specialized needs.  I like that she doesn't pretend to know everything.  Doctors who acknowledge that they, too, are human make me feel safer.)

"Cool.  Thanks.  I'm tired of feeling like an old bird."

She laughed.  "Let me know how it goes."

So I have an appointment tomorrow morning with an orthopedist, and I'm sort of hoping they do the shot tomorrow so I start putting this pain behind me.  I can't wait to weight train again.  And lift grocery bags. 

And throw Siah.   

Posted by Kerri Sparling at 11:44 AM | Permalink | Comments (22)

Yesterday didn't go as well as I had hoped.

The nurse came in first and took my blood pressure (fine), weight (slightly higher than last time but I can deal), and my A1C.

(Yes - Joslin is finally giving their adult patients A1C results day-of!  I was abnormally excited.  "You mean I'll know in 15 minutes?  Really?"  The nurse looked at me like I was new to the planet.  But for a minute, I was ecstatic.  I hate waiting.)

While the results were being spun, my endocrinologist came into the office and she and I spent almost two hours together going over numbers, plans for improvement, and the specifics of pre-pregnancy appointments.  While we were talking, the A1C result came through.

"Okay, so you're just where you were four months ago."  

And I felt like crying.  It's overly-dramatic and pretty sad to feel so affected by this number, but it has always been the standard I judged everything against.  It was the number that defined my health. It was the only number in my diabetes world that mattered, and a result that was too high tarnished my spirit.

It spoke to my success, or failure, as a person.  

Or at least that's how it's always felt to me.  

So I felt very teary and felt totally deflated.  And my endo kept talking, moving on past this number and instead trying to isolate patterns in my blood sugars that could be contributing to this result.  We went over my January lab results, and she was very happy with my cholesterol and my heart health.

"You're exercising how often?  Five days a week?  That's great.  I wish more of my patients were into their cardio that way.  Your resting pulse is very low.  That's good."

I couldn't stop thinking about the A1C.  Even though we're not actively trying for a baby, I wanted to get the green light, at least diabetes-wise.  I want to be a mom, and I don't want diabetes being anything that makes me decide to wait.

"Yeah, but the A1C.  I mean, that's the same as last time.  I felt so sure that I was doing better."

She looked at me.  "7.5% is not where we want you. Under 7, if we can, and even closer to 6, if possible.  But it's time, isn't it?  You feel ready?"

I nodded.  A little afraid to speak because this is something I've always wanted.  To be a mom.

"Okay, so it's time to schedule the pregnancy clinic.  Let's get this in motion and we can make everything fall into place.  And I want you to meet with Doctor Boston because she's the leading high-risk maternal fetal medicine ob/gyn out there, and she'll be able to handle your type 1 diabetes, Factor V, and hypertension.  You have more than two decades of diabetes under your belt, so I know you're feeling vulnerable.  We'll schedule this for June?  Does that sound okay to you?  Between now and June, you and I will work together to make this A1C happen."

"So the three of us will be together on this appointment?  And she'll see me through my pregnancy?"

"She'll actually be delivering your baby.  She's the best.  You'll be in very good hands, Kerri."

I had this moment where I clearly pictured this moment of delivery, when I will go from Kerri to "mom" and Chris becomes "dad" and in that instant, diabetes won't count.  It will be about me, and my husband, and my baby.  I felt hopeful that maybe, with enough help, I could really do this. 

"June.  And if I'm good in June, we can actually decide if Chris and I are ready to get pregnant?"

"Some mommies, I worry about.  I worry that they won't be willing to give it the best try they have in them.  But you, I don't worry about.  We can get you there.  You aren't going to do this alone."

"Okay.  I can do better.  I really need to do better.  I'm ready." 

She printed my prescriptions.  They took photos of my retinas to send to the pregnancy clinic.  I paid my co-pay.  I asked Chris to wait for a minute while I ducked into the bathroom.

I closed the door behind me and cried.  I'm so afraid that I can't do this.  I'm so afraid to do this wrong.  I'm almost afraid to try.  I'm afraid to hope.  But I'm so sure that I can overcome these obstacles, just like other women with diabetes have done before me, and become a mom. 

Cried so hard I thought my heart would break because I think this can really happen. 

Posted by Kerri Sparling at 02:20 PM | Permalink | Comments (81)

Chris and I were talking the other day about something completely random, when he turns to me and says, "Oh, wait.  Did you hear that Obama is signing that bill to reverse the ban on stem cell research?"

"I did."  

"So?  Are you excited?"

And I thought about the last two decades.  How the veiled promise of "five more years and then ..." and still nothing. 

"I'm hopeful.  You know me, baby.  I'm almost always hopeful, but until it's actually real ..."

He gave me a grin.  "We just keep you healthy and hoping, right?  Well, this is a huge leap forward."

And today, we leapt as President Obama reversed the ban.

We'll keep hoping.  With the JDRF actively leading (and Tweeting!) the charge, and with diabetes on the national stage, progress could actually be made.  Not just a product redesign or another clever device, not just another type of insulin or another pill - real progress.   

I'd love to go from "type 1" to "type: cured." 

(I've been itching to use the past tense for a long time now.)

Posted by Kerri Sparling at 01:50 PM | Permalink | Comments (16)

Posted by Kerri Sparling at 09:31 AM | Permalink | Comments (8)

About two weeks ago, I had this little, nagging pain in my right wrist.  Not so much at the bendy part, but on the outside of it, right on the bone.  It was sore to the touch, aggravated by movement, and hurt when I woke up in the morning.  It seemed to get worse every day.

So, because I'm a very bright girl, I didn't do anything about it.  Instead, I went to the gym, continued to work feverishly in efforts to meet some writing deadlines, and even finished a scarf I was working on.  (Crochet.  Yes, I am a Grammie-in-Training, it seems.)

Thanks to all of this injury aggravation, I finally had to get myself to the doctor's office yesterday.  The phone call to the nurse/receptionist, as always, was awkward.

"Hi.  It's Kerri Sparling.  I think I have carpal tunnel or some nonsense."

The nurse laughed.

"Hi, Kerri.  Sure, can you come in this morning at 11:45?  So we can check out your nonsense?"

(They are so patient with me.)

"Thanks, see you at 11:45!"

When I arrived, my wrist was throbbing after a morning's worth of mouse-clicking and typing at work.   After being weighed (five pounds since the wedding - more on that later.) and having my blood pressure checked (120 over 72 - good to go), I waited for Dr. CT to visit me.

"Carpal tunnel?"  She said, walking into the room with a concerned look on her face.  "And hi, Kerri.  Carpal tunnel in diabetes is common, but let's make sure that's what you have going on."

"It hurts here," I said, pointing to the outer right hand side of my ... well, my right hand.  "And when I lift it in a pulling motion, it doesn't hurt.  But a pushing motion and a lifting motion kills."

She took my hand and pressed on the sides, asking me to flex the tendons.  "Here is the worst?"  

"Yes.  Yup, right there."  

"Well, the good news is that it isn't carpal tunnel.  It is tendinitis, though.  I'm sorry because I can tell this is making you very uncomfortable.  What I want to do is start you taking Advil three times a day, wearing a wrist brace while you sleep, and layng off the mouse as much as you can.  We need to let this rest so it can heal properly, okay?"

I'm like an addict.  My Internet-itchy fingers started to quiver.  

"Ah, staying off the mouse will be tough because I work all day on computers and I have a tendency to write a lot when I get home at night."   

She shot me a look.  

"Okay, okay, Dr. CT.  I will be mouse-free as often as possible."  Possibly a lie, but I'll try, anyway.

Tendinitis.   Another side dish that seems to come with diabetes.  Fantastico.  Anyone else have any experience with this one?  I'm looking for fast recovery and yet the ability to remain bloggy.

Edit:  Great idea from George and some folks on Twitter - might need to Bedazzle that shit! Now I just have to order one.  ;)

Posted by Kerri Sparling at 11:08 AM | Permalink | Comments (25)

What a freaking long week, with a doctor's appointment every day and way too much medical analysis.  This week is a very personal Friday Six, and here it is:

1.  On Monday, I had my A1C drawn.  I've been to this specific lab before, and the same woman has drawn my blood before, so I didn't have a lot of anticipatory nerves.  But when the lab technician said, "Okay, you have lost all of your color - put your head down, Mrs. Sparling," I knew I wasn't as badass as I wished to be.  (And I also winced when I pulled off the cotton ball she had taped to my inner arm ... I'm such a wuss.)  But thankfully, the results were a full point lower than my last A1c, leaving me with a 7.5% and a reachable goal of <7% for April. 

2.  And Tuesday, I had a dentist appointment.  Those of you who have been reading SUM for a few years know that I have an unholy fear of the dentist, but it is warranted.  My teeth are so sensitive and require barrels of novocain to make them numb, so fearing the wielder of pointy metal hooks in my mouth is a rational fear.  However, my new dentist is FANTASTIC and brings me no pain.  I had my teeth cleaned (first time in ... ages, unfortunately), no cavities, and I have already scheduled another cleaning for April.  I'm considering the dentist hurdle cleared for the time being.

3.  Wednesday has me sitting at the dermatologist's office to have a new freckle on my breast examined.  (Whoa, Kerri.  TMI?)  Yes, that is way too much information, but since when did I start censoring myself?  (Since ... today?  Maybe I should start.)  Always in a constant state of medical over analysis, I decided it was best to have it checked out.  So I spent Wednesday morning having a kind, eccentric, little bald doctor look at my breast with a magnifying glass.  Definitely a "first."  This little issue ended up being nothing to worry about, but now I can check "awkward sharing moment with the Internet" off my list for the week. 

4.  Thursday had me with dilated pupils at the retinologist's office.  Of all the appointments this week, this eye one was the least ... awesome.   

"Look up ... okay, now look a little to the left ... Kerri, up again ..."  Dr. Retina kept shining the light in my left eye and making a "hmmmm" sound under his breath.  My face was cupped by the eye examination machine.

"You can't fool me.  I know you found something.  Spit it out."  My eye doctor and I have a very good relationship, and we talk like we're about to go grab a beer together.

"Small little something.  Hemorrhages in there that I want to keep an eye on."

"Pun intended?"  Without moving my face from the chin rest, I reached over and grabbed a Kleenex because I immediately started to cry.  But I was oddly okay with the news.  Maybe I've already had that bubble busted.

"It's okay.  But with you and your husband talking about maybe getting pregnant in the coming year, I want to keep close tabs on your eyes.  You've had diabetes for what, a million years?"

"Twenty-two years."  I smiled.

"Twenty-two years.  And your eyes look beautiful - barely a problem at all.  But I want to keep them that way.  Let's schedule an appointment to do a fluorescein dye exam before you and Chris are pregnant, just so we know exactly what we're dealing with."

"What is that?"

"We'll inject a dye into your arm, then do a dilation on your eyes.  The dye lets me really see what's going on in there with complete precision.  And with you, I do not want to take any chances."

"Okay.  So do I need to worry about this?  I'm worried.   You know I worry."

"You worry?  You do?"  The gentle ribbing was okay with me.  Soothed my anxiety a bit.  "You do what you're doing.  Work to keep your blood sugars controlled.  And think about taking some time off from all that work you do.  Maybe take a vacation?"

Fine.  So now I need to schedule a vacation.  Doctor's orders, you see.  ;)

5.  Now that these appointments are all behind me, I'm moving forward towards the next steps.  I am doing the pre-pregnancy clinic at Joslin in March, and Chris and I are working to get everything in order so that we can make our family-starting decisions based on factors other than diabetes ones.  It's an exciting time, and one I've been looking forward to my whole life.

6.  And in my only news-related bit of the day, this weekend is the end of the MedGadget awards, and thanks to all of your help and support, SUM is in the lead for Best Patient Blog.  I would be honored to win this award on behalf of every last one of us, so please keep spreading the word and voting!  :)  Thanks for everything, and hopefully on Sunday I can report that WE DID IT! 

I'm planning to spend the weekend hanging with my girl friends (finally seeing the Batman after a long absence!) and doing some recreational writing.  I hope you guys have a great weekend, and stay WARM!!

Posted by Kerri Sparling at 11:32 AM | Permalink | Comments (16)

As with everything diabetes-related (or maybe just life-related), there are pros and cons to this whole continuous glucose monitoring thing.  For those of you who are still thinking about whether you want to make this CGM leap, here are my pros and cons of CGMing to shed some light on the subject.

CGM CONS:

The sensor is bulky.  The sensor isn't tiny (about the size of an iPod shuffle), but it's held securely down by the adhesive gauze, so once it's in place, I can't feel it.  This is a big deal for me, since the Minimed CGM was painful for me.  However, it's visible underneath the sleeve of my shirts when I wear it on my arm and it's slightly uncomfortable to sleep on when it's on my back.

Can be "too much information."  Having blood sugar updates every five minutes is awesome, until you find yourself checking it every five minutes and obsessing over each result.  I needed to be psychologically ready for a CGM, and I need to be able to keep it from ruling my life. 

Receiver is enormous.  The Dexcom receiver is pretty big - bigger than my Blackberry - and it's cumbersome to wear.  I usually keep it on my desk, in my purse, or in my coat pocket when I'm out.  At night, I strap it to the headboard of the bed using a headband.  Not a big deal, but it's hard to miss.  Especially when it ...

Beeeeeeeeeeeps! The beeps are LOUD.  Mega loud.  Loud enough to wake me up during the night if I'm low (thankfully), but during the quieter parts of the workday, it's loud enough to distract my coworkers.  I recognize that the beeping is important, but it's not always convenient.

Adhesive sort of sucks.   This is my biggest compliant about Dexcom sensors.  The things do NOT want to stay stuck for more than five or six days.  I shower twice a day (before work and after the gym) and I wear clothes that rub up against the sensor, no matter where I place it.  Even with SkinTac, the edges of the sensor start to peel up at about the five day mark, and it's loose and ready to fall at the 7 - 8 day mark.  (And sometimes, the SkinTac and the Dexcom adhesive and a not-so-helpful bandaid create a huge and ugly problem:  frigging ouch.  See the photo on Flickr for a full rundown.) 

I do not like when a $60 sensor starts to peel away.  This is highly annoying.

Insurance coverage battles. While others have had their requests approved without batting much of an eye, my insurance coverage for the CGM had to be fought for.  I battled my insurance company for over eight months before receiving my approval letter.  The insurance hurdles are a definite con, and might make some people reluctant to fight for their right for a CGM.  (Cheerleader note:  But don't let it stop you!  Go for it!)

Doesn't feel "sexy."  (Yes, I know this "shouldn't matter," but these are my personal pros and cons, so roll with me, okay?)  With the pump infusion set stuck into one part of me and the CGM sensor in another, wearing two devices doesn't exactly feel like I'm ready to model for Victoria's Secret.  There have been plenty of times when a moment has been interrupted by the CGM beeping or the sensor getting stuck on my clothes and whatnot. 

CGM PROS:

Low blood sugar safety net.  This was a huge part of why I wanted to use a CGM in the first place:  hypoglycemia unawareness.  I was exhausted and frightened of the lows at 3 am, so having the added safety net of the CGM has been a huge improvement.  The CGM does its job and protects me from plummeting blood sugars.  When Chris is away on business, he prefers that I wear the CGM to keep an eye on those lows.  It makes me feel safe, and I value that "pro" above all others.

Helps me avoid staying high.  My body reacts to blood sugars that are over 260 mg/dl or so, but those 160's and 180's often go unnoticed.  The Dexcom helps me wrangle in these "minor" highs and tighten up my blood sugar standard deviation overall.  Staving off both the lows and the highs will be particularly helpful during my future pregnancy.

Excellent for exercise.  I go to the gym at least five days a week, and my workouts range from walking/jogging on the treadmill to cardio circuit training.  The CGM has been AWESOME at detecting fluctuations in my numbers while I work out, helping me avoid those crash-and-burn lows at the gym and also the highs that sometimes crop up after a hard workout.  (And it was great on our hikes when we went to Acadia - excellent tool!)

Driving safety.  I spend a lot of time in the car driving back and forth to RI, and the drive time is anywhere from 2 1/2 hours to 4 hours (depending on traffic - I hate CT highways).  Having the Dexcom in the center console next to me while I travel is another big bonus.  With hypoglycemia unawareness and blood sugars that seem to be affected as much by my moods as by what I'm eating, having an extra eye on those numbers is crucial to keep be safe behind the wheel.

Integration-free works for me.  I trialed both the Minimed CGM and the Dexcom and for me, the Dexcom being a seperate device worked best for me.  With the Minimed CGM, I couldn't hear the pump alarming in the night because it was buried underneath the blankets.  Having the Dex receiver separate from the pump is convenient for the nighttime alarms and also if I want to avoid having to deal with the CGM for a little bit.  I can shove it into my purse, bury it in a desk drawer, or even walk away from it for a little while if I want.  I like the freedom from being beeped at sometimes.  It sounds counterproductive, but in the longrun, this is a bonus for me.

Trending and tracking.  Here's the point of CGMs - to track the trends of my blood sugars.  The Dex doesn't replace my meter, but instead works with it.  I test on my meter and see a result of 100 mg/dl, but with the Dex, I know I'm "100 going down," "100 going up," or "100 holding steady."  This makes it easy to go into long meetings at work without fearing a crash, and also lets me go to bed at a blood sugar of 90 mg/dl with confidence.

Pretty darn accurate.  I don't expect this thing to be right all the time.  I already have my head programmed to accept that a CGM doesn't replace finger sticks, so when things don't match up all nice-nice, I don't flip out.  Overall, though, I've found that the CGM rides pretty close to my meter.  Dex works better when I'm running a bit steadier, so it's actually a weird sort of incentive to maintain better control to retain the integrity of the sensor.  Don't ask me to mentally make sense of that - I need to take whatever motivation I can and run with it.  ;)

But it does feel sexy.  And this is the flip side to that "con" coin.  The Dexcom is sexy.  It's stuck to me to gain better control of my diabetes.  Good control helps everything from my weight to my hair to my internal organs to my smile.  Being healthy is sexy as hell.  And being confident enough to wear this machine, despite its cons and because of its pros, makes me feel stronger all the way around.  For me, after weighing all these pros and cons, the CGM is definitely worth it.

Readers Beware!!:  These are MY pros and cons.  I chronicle my personal experiences with diabetes here on SUM and I'm not a doctor or a CDE or a medical professional of any kind.  I have decided to use the Dexcom CGM after trialing both the Minimed and the Dexcom, but I know plenty of people who are using the Minimed CGM without issue.  For me, the Dexcom was a more comfortable fit into my life, literally and figuratively.  It's all about personal preferences, and these are mine. 

If you're thinking about trying out a CGM, I recommend trialing as many kinds as you can before making an informed decision.  Your mileage on these devices will vary, so it's important to find out what works best for YOU.  Contact your CDE and see if you can schedule a week trial session with different devices. 

If you want to share your perspectives, feel free!  I love that the online diabetes community has become a real source of information for diabetics everywhere who are looking for real information - we are the true mavens of patient experience!

Posted by Kerri Sparling at 11:07 AM | Permalink | Comments (22)

In many ways, I'm an adult.  I am married.  I have a job.  I am responsible (to a certain extent) and I make the bed without being asked.  This makes me a grown up, I think.

However, I'm scared of the dentist, and the idea of going for something as simple as a routine cleaning makes me tremble like a child.

I have good reason, though.  My family has good looking teeth, but they not the best, structurally.  Our teeth are exceptionally sensitive, and we require more novocaine than your average dental patient.  As a kid, I spent some time in the dentist's chair having cavities filled (so did my brother and sister) and I wore braces for three years in middle school.  As an adult, I've had my share of weird little toofus problems - like grinding down my molars while I sleep and these pesky sensitive spots at the base of a few of my front teeth.

It's these sensitive spots that cause me the most trouble.  About ten years ago, my dentist decided that he needed to cap the base of my sensitive teeth.  "No, I don't want that," I thought.  But becuse I was in Milgram Mode, I caved and let the dentist do his thing.  He shaved off a bit of the very bottoms (near the gumline) of four of my teeth and put a ceramic filling over them.  Sensitivity issues?  Solved.  But the procedure left me sore and bleeding for days. 

And, three years later, one of the ceramic fillings popped off, exposing that vulnerable nervy area.  I had a different dentist, and his repair included not using enough novocaine, accidentally drilling my lip, and earning many bloody cotton balls.

Two and a half years after that, this shoddy workmanship cracked off again.  Another dentist took a literal stab at it, mangling my gums and leaving aching teeth and bruises on the side of my face.   Bastard dentist.

So when this God forsaken filling popped off yet again Monday morning, I was filled with panic.  "Oh, for crying out loud."  The exposed spot wasn't so painful, but past experience told me that repairing it would be a nightmare.  

Without letting my brain reach maximum nervousness, I called a new local dentist and made an appointment.  "Tomorrow morning?  Great, thank you."  Pause.  "Um, is Dr. B nice?  I'm nervous."

The receptionist laughed.  "She's very nice.  We have plenty of nervous patients, and they all like her a lot."

"Awesome.  See you at 8." 

I showed up to the small practice, nerves of all kinds exposed, and Dr. B greeted me at the door.   

"Hi, are you Kerri?"

"Yes.  You knew it was me?"

She consulted my chart.  "They said you were nervous.  You look a little nervous."  She smiled and closed the folder.  "Nothing to worry about.  This is going to be just fine."

Faithful Readers, let me tell you that I sent a thank you note to the dentist this morning because she was awesome.  Aside from being this friendly looking woman with an easy smile, she took great pains to make sure I wasn't in any pain.  She made sure I was novocained to the fullest extent so I wouldn't feel any discomfort at all.  She told me what she was going to do before she did it, and she advised me to close my eyes when the instruments in play weren't the friendliest-looking.  (I told you I was a big ol' baby.)  She also had a DVD player mounted above the chair, and using headphones to listen, I watched two episodes of The Office while she fixed my tooth.  I know this sounds melodramatic but I can't properly explain how scared of the dentist I am, and how much this particular experience didn't suck.

After it was over, she smiled at me.  "I hope that wasn't too bad.  Are you feeling okay?"

"It wathn't bad at aw.  Fank you," I said, trying to look grown up, but it was hard with the drool and one side of my mouth completely uncooperative.  I smiled a lopsided, pathetic smile, but I meant it.  And when I got in the car, I called Chris.

"Chrith!  The dentith wath awefum.  It didn't huht at aww.  I aweady scheduwed a cweaning."

Cwisis avewted. 

Posted by Kerri Sparling at 10:11 AM | Permalink | Comments (17)

I have been approved!!!!!!!

They're covering my sensors.  I cannot believe it.  And from what I've been told, I'm one of the first on Connecticut's Oxford Health Plans to be approved for CGM use. 

Also from what I've been told, it takes an external appeal to make it happen.  So if you are fighting for CGM coverage, DO NOT GIVE UP.  Keep fighting!  Appeal every denial.  Make sure you don't miss any appeal deadlines!  It seems like insurance companies deny everything at first and only approve once you battle back.  So keep fighting, and do not give up!  (And use exclamation points!  Ahhh!  I'm so excited!!)

The tools to live well with diabetes should not just be for the people who can afford them.  Fight for your right for coverage.

Posted by Kerri Sparling at 02:09 PM | Permalink | Comments (60)

Anyone who hasn't been storing their brain in a shoebox underneath the bed has probably realized that the economy is tanking.  People are being laid off and positions are being eliminated at companies.  Grocery money doesn't seem to buy as much now as it did even six months ago.  Gas prices, despite the fact that they've fallen a bit in the past few weeks, are still just under $4.00 a gallon. 

But these are issues that are affecting all families across the nation.  For us, diabetes care can also be affected by the crumbling economy.  My brain tends to go into panicked little pockets when I think about the economic situation.  For me, a job means more than just money - it's medical insurance.  Even now, in good health and without any outstanding medical bills, my monthly medical expenses add up.  From co-pays on items like blood pressure medication and birth control pills to the non-prescription items like prenatal vitamins and healthy food, it can get expensive. 

I was thinking about money in my budget that I consider well-spent, like my monthly membership to the gym and our grocery bill.  For some, spending $30 a month to workout and spending an inordinate amount of money on foods like fresh produce, organic products, and other fancy crap that they sell at Whole Foods and Trader Joes may seem like money that could be saved.  But when it comes to diabetes management, "control" is more than just the pump I'm using and the insulin I'm taking - it's about all these other variables, too. 

I remember (let's step into the Wayback Machine again, shall we?) test strips that could be cut in half, or into thirds, and at least the gist of a blood sugar level could be grabbed by comparing the color of the strip pad against the guide on the side of the bottle.  Granted, today's strips are more accurate, but are they really costing manufacturers $0.85 apiece to make?  (Because that's about what they charge us, as consumers.)  Diabetes supplies used to be able to go further.  Now they are indeed more accurate, but they don't go very far at all.  And keeping up with the costs of this maintenance, in addition to making attempts at important, preventative care like a CGM, is starting to make me a little nervous.  I'm finding my mind going back to the desire to wear infusion sets past their three-day shelf life and refilling reservoirs, to help extend the life of my supplies.  Ridiculous?  Yes.  But when I'm thinking about other life expenses - car payment, rent, utility bills, gas prices, and the occasional movie or night out - I find myself cutting corners where I can.

What are you guys doing to get the most bang from your diabetes buck?  Are you streeeeeetching out the life of insulin pump supplies?  Are you trying to gain insurance approval for a CGM as a way of conserving test strips?  Do you find yourself debating between paying for gas or renewing your gym membership?  The decisions are tough now, and I fear that they may be getting tougher in the future.  (And have you seen the Twitter election feed?  Regardless of who you're supporting in this election, this constant streaming commentary is pretty fascinating.)

The price of good diabetes control is high, and the cost of not trying to stay healthy is even higher.  How are you managing the cost of care?

Posted by Kerri Sparling at 11:08 AM | Permalink | Comments (21)

There's a lot of buzz in the blogosphere today about insurance denials and appeals, starting with an article in the Wall Street Journal about "Pushing Back When Insurers Deny Coverage For Treatment."  Scott Strumello brought this article to my attention this morning via his comprehensive blog post about it, and Bernard sent me there again with his perspective.  And after reading everyone's take, in addition to having experienced three denials for CGM coverage from my insurance company (Oxford Health), I realize that I have gone at this problem the wrong way.

Insurance companies don't care about my future baby.  They don't care about my A1c.  Unfortunately, insurance companies are watching dollars and cents, not good sense.  A passionate letter from a patient doesn't even come close to moving an insurance company to provide coverage or overturn an appeal.  They seem to respond to "the facts" only, and I should have attacked them with facts to begin with.  Instead, I took the personal approach, which left me denied three times.  And it's partially my fault because I expect them to care, even when I know they won't.  My approach was arrogant, thinking they'd respond to actual emotion.

But this time?  No emotion at all.  This appeal was just the facts, ma'am.

I sent the Connecticut Department of Insurance a packet of information this morning, in hopes of having my Dexcom CGM system denial overturned.   I included the following:

• Request for External Appeal form (my insurance information, healthcare provider information, detailed description of disagreement with healthcare plan)
• The denial letter from Oxford Health Plans, stating that their decision is final
  
• Proof that the service in question is a covered benefit (this was in the form of my insurance policy benefit handbook)
• Executed medical release form
• Photocopy of my insurance card
• Documentation supporting my appeal, including a letter from me, my endocrinologist, and Dexcom
• Oh, and a check for $25.  They specify that this is non-refundable. 
  

Under the guidance of the Region Managed Care Director at Dexcom, the supporting documentation I included was very factual and devoid of almost any emotion.  My personal letter, which was written with the help of the Dexcom rep and is so stoic and so dry that it doesn't even sound close to anything I would say is supposedly an example of what "will work."  The letter from my endocrinologist cited my elevated A1c, the ADA A1c standard for pregnancy, the Factor V issue, 22 years of IDDM, and various complications I've experienced (including the cotton wool spot, high blood pressure, etc).

Dexcom also provided a packet, which included the recent NEJM study results and other studies supporting the use of CGM technology to better control diabetes.  The letter from my Dexcom rep included a demonstration of the proven benefits of CGM technology on health outcomes, and also outlined the appeal-denied-appeal-denied cycle that I've been in for the last few months.

So it's in the FedEx box now and waiting to be sent off to the Connecticut Department of Insurance.  Each item is tabbed and in the order requested by the appeal form.  It's on time, comprehensive, and fact-filled.  I hope this appeal gets my CGM approved.

The only frustrating part of this process was that I couldn't really lash out.  I couldn't tell these insurance companies what I was really thinking, which was along the lines of "WHAT THE FUCK IS WRONG WITH YOU?  CAN'T YOU SEE THAT THIS TECHNOLOGY WORKS AND I WANT A HEALTHY PREGNANCY AND WHO ARE YOU TO TELL ME I'M NOT APPROVED?!!"  (Ahem.  Sorry.)  It's infuriating to play by their rules, but I'll do whatever it takes to obtain approval.  It makes me absolutely crazy that this technology exists and it has worked for me and it's still not covered.  Don't insurance companies want people to remain healthy?  Isn't there a cost-benefit to them for acting proactively instead of reactively? What is wrong with this healthcare system?!

I'll wait patiently.  I'll hope that this fact-driven approach gets me somewhere.  And I'm very thankful for the assistance and support I've received from Dexcom, dLife, and my friends and family.

But I had to get my digs in somewhere - the memo line of the check is "ridiculous fee for appeal."  Jerkface insurance company.  They're messing with the wrong girl.

(I hope.) 

Posted by Kerri Sparling at 12:11 PM | Permalink | Comments (26)

About once a month, there's a certain spike to blood sugar patterns that is both predictable and completely chaotic - welcome to this morning's TMI post about diabetes and the menstrual cycle. 

Two months ago, when the gene for the Factor V Leiden mutation was detected in my blood, my endocrinologist and my gynecologist decided to remove me from my birth control pill and switch me to something with less of a clotting risk.  Since I decided to go on the pill when I was a freshman in college, I have always been on the standard estrogen/progesterone pill (I was on the ortho-tricyclen, then tri-sprintec, if you want a good ol' dose of TMI).  When it came to diabetes and this kind of pill, there was plenty of information out there, so I had a good idea of what to expect.

But this new one?  The progesterone only?  It's a bit of a wildcard.  I'm currently taking the Errin pill (28 days of hormones, no "placebo" pills) and these first two months have been pretty damn tricky.  I'm not sure if it's my age, the ticking of my biological clock, or just the changes in my body as I age, but this pill made my emotions run wildly.   And the information I've received on this pill has varied.  The internet (oh Internet!) informs me that the brand name version of this pill comes with a diabetes-specific warning:  "Diabetes patients - Ortho Micronor may affect your blood sugar. Check blood sugar levels closely. Ask your doctor before you change the dose of your diabetes medicine."

Oh for crying out loud ... another variable?  

I was on the old pill for almost ten years, in total, and I was used to the effects it had on my body.  I was accustomed to the 28 day cycle, the guaranteed four day period, and the pre-period spikes weren't dramatic.  I actually noticed a drop in my insulin needs while I was on the placebo week, and I had a decade to really adjust to the whole process.  This new bit, with a whole new hormone regimen, has thrown my body into the spin cycle.  I can't anticipate the highs because I'm not sure if/when the actual period is coming.  (Part of the trick with progesterone-only pills is that you may not always have a period, which makes my brain melt.) 

Aside from these unpredictable start times, this seems to be the first pill that affects my emotional state closer to the end of the 28 day cycle ... for example, I came across this video of a singing little six year old and promptly burst into tears.  I had a few days of feeling amped up, over-emotional, and anxious, and these emotions had their own little tea party with my blood sugars.

I want stability.  My whole reason for being on birth control at this point is to protect my body from pregnancy, because my A1C is spikey.  So I take the pill to protect body-from-baby/baby-from-body, yet the pill itself could be contributing to an elevated A1C.  It's frustrating because pill options are limited (thank you, Factor V), pregnancy is not encouraged at this A1C, and I'm a young, newly-wedded woman with a healthy libido.  (Kerri!  Your mother reads this blog!  And so does HIS mother!  Ahhhhhh!  Go delete that!  I'll wait.)

Nope.  Can't delete it.  This is real life with diabetes, awkward bits and all.  Anyone out there on a mini-pill and seeing some numbers (and emotional) fluctuations?  I'm trying to learn everything and anything I can, with the end goal being Nice Healthy Baby Range.  Talk to me - I need some advice!

Posted by Kerri Sparling at 11:41 AM | Permalink | Comments (30)

My insurance company still says NO to my request for approval of a continuous glucose monitoring system.  But - a ha! - a study conducted by the JDRF has given me something to print out and mail along with my third appeal.  Thanks to several dozen emails this morning directing me to the study and special thanks to Cynthia Rice, Director of New Technology Access in Washington, DC, I now have the inside scoop on why insurance companies should listen up and listen good:

Kerri:  This study quantifies the value of a continuous glucose monitoring device for people with type 1 diabetes, in particular, for adults aged 25 and over.  How did individuals over the age of 25 fare using this device?

Cynthia:  The study found patients with type 1 diabetes who used continuous glucose monitoring (CGM) devices to help manage their disease experienced significant improvements in blood sugar control. Overall, adults 25 and over lowered their A1c by .53%; were more likely to lower their A1c by 10%; and were more likely to reach target below 7.0.

Kerri:  In regards to the younger group, the kids under 15, how were their results similar or different?

Cynthia:  Children under age 15 using CGM were more likely to lower their HbA1c by at least 10% and achieve HbA1c levels below 7% compared with non-CGM users.  At the same time, the average decrease in HbA1c was not significantly different in the CGM and non-CGM groups.  Although the study was not specifically designed to assess the effect of frequency of CGM use on A1c, an initial analysis of the data suggests that patients under 15 who used CGM at least six days a week or more lowered their A1cs just as much as adults.  On average, only 50% of children under 15 who used CGM used it six days a week or more.

Kerri:  What is the assumption about the 15 - 24 age group?  Why didn't the use of a CGM make a bigger impact on their A1c values?

Cynthia:  Fifteen to twenty-four-year-old CGM users as a group did not experience significant improvements in glucose control compared with the control group.  Although it’s clear from a preliminary analysis of the data that teenagers were the least likely group to wear the CGM near daily (30%), the study was not geared to answer this question -- however, many families with teenagers will not be terribly surprised with the result.

Kerri:  At a session at CWD in Orlando this year, Bruce Buckingham discussed how CGMs work best for people who wear them at least six days a week.  Your study appeared to confirm this statement, at least for the 25 and older group.  How does duration of use affect results?

Cynthia:  In the study, CGM use varied with age, averaging at least six days a week over the course of the trial in 83% of the patients 25 years and older, but dropping off to 30% of the 15 to 24 year olds and 50% of the 8 to 14 year olds. Although the study was not specifically designed to assess the effect of frequency of CGM use on HbA1c, an analysis presented this week at a scientific conference suggested that patients within all three age groups, including teens and young adults, who used the device at least six days a week had substantially lower HbA1c levels after six months compared with patients who used CGM less than six days a week.

Kerri:  Many people with diabetes are fighting with their insurance companies to get their CGM systems approved.  How can this study help move patients towards approval?

Cynthia:  By showing that CGM use improves glucose control, this study, published in the prestigious, peer-reviewed New England Journal of Medicine, gives justification for expanded health plan coverage of CGM.  JDRF will be briefing health plans on these results and encouraging people with type 1 diabetes and their loved ones advocate to their own health plans to cover CGM.  You can help secure coverage for CGM by clicking here.

Kerri:  And lastly, how can we, as the diabetes community, get more involved and help move research forward?

Cynthia:  When you click on this link, you can not only help secure coverage for CGM, but sign up to receive emails from JDRF on how you can advocate for federal research funding and get involved in your local community to help move research forward.  

Thanks for your time, Cynthia!  And for more information on CGM insurance coverage, you can visit the JDRF website, sign the CGM Anti-Denial Petition, and check for more CGM updates here on SUM.

Posted by Kerri Sparling at 04:17 PM | Permalink | Comments (6) | TrackBacks (1)

Over the last three months, I've received no less than ten phone calls from a collections agency:

"Mrs. Moron?  You owe us $100 for insulin pump supplies."

"It's More-own.  Actually, it's Sparling now.  And I do not owe your company anything.  I've been paying my co-payments with each order."

"I'm sorry, Mrs. Sparkling.  Our records show that you owe one hundred."

I tell them they are wrong.  They say they'll check their records and call me back.  About a week later, the phone will ring again:

"Mrs. Sparlinc?  Your balance is $60 owed to us."

"That is incorrect.  I don't owe you guys anything.  Can you send me supporting documentation?  I want to make sure our records are synching up.  And my last name is Sparling.  With a g at the end."

"Okay."

They send another bill, instead of supporting documents.  The bill is for $100 (I thought they just said $60?)  I call them:

"This is Kerri Sparling.  I received another bill from you, but I believe it is incorrect."

"Yes.   You owe $40."

"The bill says $100.  Last time you called, you said $60.  Now it's $40?"

"Wait, I was wrong.  You owe $60.  Please send a check or we will have to pursue legal action."

"This is ridiculous.  Do not call me again.  I am writing a check for $60 today.  Don't call me, don't bill me without supporting documentation, and please, please get my name right."

I mailed out the check last week, on August 19th.  I received correspondence from them today, dated August 21st:

A refund of $40, made out to "Kerri Morron [sic]."  Frigging idiots.  Now I'll wait for them to send back my $60.  In the meantime, I'm sure they'll send me a bill.

Posted by Kerri Sparling at 02:09 PM | Permalink | Comments (14)

"The problems are that they aren't accurate all the time and they don't replace fingersticks."  She adjusted her shirt collar.  "It's tough for insurance companies to get on board with that."

It's no surprise that I attended every CGM focus group offered at CWD.  From discussions about government viewpoints with Arleen Pinkus of the FDA to debates about accuracy with Dr. Bruce Buckingham, I was tuned in and looking for ammo against my insurance company's repeated denials.  (Acknowledgment of my second appeal arrived in the mail while I was away.) 

When the group (which included Manny, Sara, and the man himself - Bennet) asked about insurance coverage, the FDA lady told us that there just wasn't enough data from the Medicare crowd.  

"So you're telling us that we just need to slap a few sensors on some 65 plus diabetics and that will help turn the tide?" I asked.

She actually said, "Yes.  That would do it."

Fortunately, the CGM session with Bruce Buckingham was far more informative and armed me with enough information for my third appeal letter.  He was a warm and soft-spoken man who lead a 90 minute session about CGMs and how they can benefit the life of someone with diabetes. 

"When I worked at the diabetes camps, they called me a pancreas, because my pancreas worked," he quipped to us, talking about the history of diabetes and explaining how physicians used to taste the urine of their patients to make a diagnosis.  "The first pump was in 1978.  The first common place meter was in 1980.  I know - the pump was before the meter!"  

Dr. Buckingham talked about how CGMs don't measure blood glucose, but instead measure the interstitial fluid.  He told us that it takes about six minutes for the blood glucose to affect the interstitial fluid measurements, which helps explain how CGMs and glucose meters don't always match up with precision.  He cited that the delay is more realistically a full eight minutes.

There was a lot of discussion about accuracy.  From my almost 22 years of experience with type 1 diabetes, I'm convinced that every mg/dl result is a concrete one.  It's been a tough mental hurdle, leaping from snapshots to trending.  But Dr. Buckingham confirmed yet again that a CGM is a trending, and not a treatment, device.  Any CGM result should be confirmed on a glucose meter before treating with food or insulin. 

Another point he touched upon was that of sensor calibration.  I test upwards of 15 times per day, so I was inclined to calibrate my sensor whenever I tested my blood sugar.  "Calibrating when unsteady can cause the sensor to be biased," Dr. Buckingham said.  If I test and my numbers are rapidly rising, I'm calibrating my sensor on the climb.  That's going to throw off the accuracy for sure.  Calibrating when steady (or at least steady-ish ... diabetes is never completely precise) helps retain the integrity of the sensor.  But there is always a lag time with subcutaneous sensors, i.e. recovery from a low blood sugar may not be apparent on a sensor in a timely fashion.

All these technical details were well and good, but I wanted information on what made someone a good candidate for a CGM (particularly in the eyes of insurance companies).  Dr. Buckingham provided a list of possible candidates:

• patients at a high A1c
• patients with a fear of hypoglycemia
• hypoglycemic unawareness
• pregnancy/preconception
• gastroparesis
• athletes
• patients on medications like pramlintide (Symlin) and exenatide
• patients who may wear the sensor intermittently to better understand their own diabetes

I saw myself on that list several times.  Dr. Buckingham told the group about how a CGM can provide fantastic feedback that can really affect diabetes management decisions.  He said that the immediacy of the feedback helps identify causality, meaning that we could see how different foods affect blood glucose levels, and that the data can be use to prevent or detect earlier extremes in glucose levels. 

He did have some warnings, though.  He warned about over-calibrating (as discussed before).  He also warned against insulin stacking (taking small bolus after small bolus in efforts to correct highs). He also acknowledged that some of the alarms weren't effective, and that many PWDs slept through them.  One tip he offered was to keep the CGM receiver in a glass on the bedside table, so that when it vibrates, the rattle in the glass helps wake you up.

"It doesn't work unless you wear it," he offered, adding that the sensor is a behavior modification tool and if you aren't ready to accept diabetes, you may not be ready to wear an extra device.  According to Dr. Buckingham, a CGM can make someone feel vulnerable and defensive, with every number out there on display.   

But then he said this:  "A CGM can help you achieve a better A1C without increasing hypoglycemia."  I thought about the lack of lows I've had in the past few months, and I was happy to not be crashing and burning in the middle of the night.  But an elevated A1C also came along without those lows to tip the curve.  I'm so hopeful that a CGM will help me gain better control of my diabetes without tossing my numbers down the well every few days.  

I thought about how Chris said he feels safer when I wear it.  My mom said the same thing.  And I agree.

Come on, Insurance Companies.  Get on board!!

Editor's Note:  Do you want to join the fight for CGM coverage?  Sign the CGM Denial Petition and Raise Your Voice!! Also, Dr. Bruce Buckingham is leading a chat about Continuous Glucose Monitors on DiabetesTalkFest tonight.  Log in at 9 pm EST!

SUM Tags: diabetes, Friends for Life, CWD, CGM, continuous glucose monitor, diabetes advocacy, children with diabetes

Posted by Kerri Sparling at 11:00 AM | Permalink | Comments (8) | TrackBacks (1)

We drive.  Friday night, after taking in the new Batman movie, we hopped in the car late at night and drove home to RI.  (Late-night driving means less sleep but also means less traffic, and we'll take the latter, thanks.)  Saturday morning had me at the beach with a few of my college roommates, then dinner out with family on Saturday night, then breakfast with Batman (my friend, not Christian Bale), then a cookout at my mother's house on Sunday afternoon.

It sounds like a lot of driving because it IS a lot.  Chris and I try to connect with as many of our friends and family as possible when we come home on the weekends because we don't have the opportunity to see them for several weeks on end.  Connecticut, though filled with career opportunities for us both, doesn't have much in the way of family.  And lately, family and friends are something I've been missing tremendously.

I've hit a very rough patch, diabetes-management wise.  My A1c came back the highest it's been in five and a half years, and I didn't take the increase with any grace at all.  Even though I can attribute the rise to wedding chaos and honeymoon laziness, I still felt so disappointed.  In addition to an elevated A1c, I've also been diagnosed with a disorder called Factor V Leiden, which can cause blood clots and has forced me to change some of my routine (read: birth control pills are now a no-no).  Despite the fact that this disorder is unlikely to cause problems, it's still a new blip on my health radar and contributed to my feeling of "eh" last week.  I was feeling overwhelmed with health concerns, frustrated with insurance issues for the Dexcom, and pretty damn grumpy.  Crumbs Morrone ... er, Sparling.  Crumbs Sparling.

I needed some time with friends and family this weekend, to help take the edge off a roughish week.  And it worked.  Yesterday afternoon, I was hanging out in my mother's yard, taking pictures of her garden.  My mom is very whimsical and a little silly, and her yard is crammed with flowers and these strange little garden critters that she finds from the Christmas Tree Shop:  small ceramic ducks, little turtles, and garden gnomes.  It sounds like her lawn is littered with trash, but these creatures aren't just flung about haphazardly.  They're carefully placed, hidden between hydrangea bushes and underneath rhododendrons.  You have to look for them to find them.

 

I came across a big, fat, ceramic bluebird yesterday.  It was in her front lawn and guarding an azalea bush.  

"Bluebird of happiness!"  My mother came by, checking out what I was photographing.

"I see that."

"Well?  Doesn't it make you happy?"

I thought for a minute.  I felt revitalized after being socially reconnected with my friend and family.  I felt ready to make the medical changes necessary to accommodate the new condition and to take change of my diabetes management once more.  I felt loved.  Supported.  Happy.

"It does, Mom.  That fat bird totally makes me happy."  She grinned at me. 

Onward, right?  All I can do is get over the bad news and move forward towards something better.  Good health is one day at a time.

Posted by Kerri Sparling at 12:20 PM | Permalink | Comments (23)

The paperwork has been on my desk, but I kept staring at it for a long time.  And by "long time," I mean three full months.  I kept finding reasons to put it off - my wedding was coming, I was busy at work, my shirt sleeves were too long - but the real reason was because I knew the number would be kind of crap.  A1Cs are never fun, and they serve as a sort of diabetes report card.  With my stress levels being a little out of control during the wedding ramp-up, my numbers followed suit.  And I didn't want to know what my A1C was, out of fear and stubbornness. 

But on Tuesday, I turned my brain off for a bit.  I grabbed the paperwork, left my office, and drove directly to the blood work lab.  I refused to psyche myself out (and I tried really hard not to think about the pinchy needle easing into that tender part of my arm ... not a fan). 

"Hi, I'm Kerri.  I need to have an A1C drawn."

"Okay, write your name on the sheet here and have a seat."  

I wrote my name, thus making it official.  I was there, for my A1C, and there was no turning back.

I'm not sure why I shy away from this test so much.  I think it's because I have spent over twenty years putting so much of my self-worth into this percentage.  When it comes back under 7%, I feel like these moments of diabetes difficulty are worth the effort.  I feel strong and confident, like I'm really making strides in achieving good health.

But the bummer numbers.  The ones that are over 7% and cause the endocrinologist to check the "uncontrolled type 1 diabetes" box.  My Internal Motivational Speaker screams in protest at this box checking.  "Hey!  Uncontrolled?  Dude, she's paying attention and really putting forth a huge effort to manage this disease!"  I get overwhelmed by the possibility of complications and maybe not having a healthy pregnancy.  The parts of this disease that I try not to think about, try not to focus on, creep into my thoughts and whisper in my ear.

The phlebotomist put the rubber thing around my bicep, asking me to make a fist.  "To bring out your vein," she said, preparing the needle.

"Oooh, I'm not a fan of needles," I admitted.  

"But you take needles all the time, right?  With the diabetes?"  She tapped my arm a few times with her finger.

"Sort of.  I have a pump.  And a CGM," I gestured to the Dexcom sensor on the back of my arm.  "This takes blood sugar results for me so I don't have to prick my finger so much."

"Aye!  The finger prick!  I do not like that so much at all.  I am a diabetic type 2.  The finger pricking makes me all ... " she made a face to let me know how much the finger pricks stung.  "I do not enjoy it."

"Well I don't enjoy having blood taken.  That's why I am nervous."

She laughed at me softly.  "And that's why you are staring at the wall instead of looking at your arm, right?"

"Damn straight."   

Now I wait.  I should have my results in a few days, and I'm really hoping that this A1C result doesn't reflect the weeks of stress and honeymoon and worky bits.  I hope it shows the hours at the gym, the healthy eating, and the constant monitoring.  Either way, knowing this number is important.  Some would say it's half the battle.  But I wouldn't end this post with a silly reference to GI Joe ... would I?

Posted by Kerri Sparling at 11:35 AM | Permalink | Comments (22)

Dear Insurance Company,

I got your letter yesterday.  I opened it up and saw your second denial.

"Our Medical Director has decided to uphold the initial adverse determination because this monitoring system has not been proven to be any more effective in the management of diabetes mellitus than the standard monitoring."

I disagree.

I test my blood sugar 15 times per day.  I test when I wake up, before I eat, after I eat, before I exercise, while I exercise, before I sleep, and sometimes in the middle of the night.  I also test when I feel "off."  I try to catch the fluctuations as often as I can and I respond accordingly.  Unfortunately, I am only seeing snapshots with this "standard monitoring," instead of the streaming video I get from a CGM.  Maintaining tight control is difficult with only snapshots of information.

I got married two months ago and my husband and I are planning to start a family in the next year or so.  As a type 1 diabetic for over 21 years, preparing my body for baby is a bit of a daunting task.  My endocrinologist has told me to bring my A1C as close to 6% as possible.  I am starting the Pregnancy Clinic at Joslin at the end of the summer and am working hard to run my numbers tight.  Unfortunately, running at a tighter clip results in more low blood sugars. 

Sometimes I don't feel my low blood sugars.  I've felt perfectly fine and then tested to see a result of 38 mg/dl or 41 mg/dl or 45 mg/dl.  These are not safe numbers.  As a result of my efforts to lower my A1C, it takes longer for me to feel the lows.  I have hypoglycemic unawareness.  A CGM would keep me safer from these undetected lows.  And when I'm pregnant, it would protect me and my baby - at no extra cost to your company. 

And in January 2003, my then-boyfriend woke up to find me unresponsive and sweaty.  He tried to get me to drink juice but I fought him off.  The paramedics were called and it took three of them to hold me down and administer glucose.  After a tube of glucose gel, my blood sugar was 44 mg/dl.  Had my ex not woken up, discovered I was low, and called the paramedics, I may have died.  Let's just think about that for a minute, okay?  Dead, thanks to a low blood sugar that I did not wake up for.  A CGM would have warned me about my falling glucose with a loud and relentless BEEEEEEEP.  I would have woken up, tested, and most likely caught this low at 60 mg/dl instead of whatever low I achieved that morning.

While I believe that your company should respond to these issues on an empathetic and proactive level, you may only care about the financial aspects of this issue.  I offer the following:

The Dexcom unit I am using was given to me by the company.  You would not need to purchase the receiver unit or the transmitter at this time.  This is a savings of $1000.00.  What I am looking to cover is the cost of Dexcom sensors, which are $240 for four sensors.  Over the course of a year, these sensors would cost $2,880.

To offset this cost, I would be testing less frequently.  I would go from testing 15 times a day to approximately 7 times, saving $5.00 a day.  Over the course of a year, I would be using 2,920 less test strips.  With test strips costing approximately $1.00 apiece, this would be a savings of $2,920 per year. ... Wait a minute, that's saving more than the sensors are costing.  Looks like you guys just made $40, not to mention co-pays for these items! 

We should also factor in the cost of an ambulance ride, if I were to have another low that required assistance.  Medical intervention could cost upwards of $1,000.  The CGM is a measure that could prevent this cost from occurring.   

These are just the immediate cost savings to your company.  Never mind the savings that will accrue long-term, when my body remains healthy as a result of achieving a tight A1C instead of developing expensive diabetes-related complications.

Overall, it makes more financial sense to invest in a CGM for me.  Proactive measures will keep me from costing insurance companies large sums in the future, when more serious issues may arise as a result of several decades of diabetes.  

And, as an added bonus, I will be healthier.  Imagine that.

I am looking forward to your response.  

Sincerely,
Kerri Morrone Sparling 

Posted by Kerri Sparling at 11:25 AM | Permalink | Comments (32)

I know this is how it will go when I get to the dentist's office:

Dental Hygenist:  Okay, Kerri.   You just need to sit right back here and relax.

Kerri's Mind:  No relaxing.  No relaxing at all.  Get that freaking bib away from me. I do not want to sit in this damn chair.

Kerri:  Sure thing.

Dental Hygenist:  Great!  So let's just get started with your cleaning, okay?  First, I'll stuff your face with cotton balls and then scrape at your mouth with this metal hook.

Kerri's Mind:  Get the hell away from me.

Kerri:  Sure.  

Dental Hygenist:  You haven't been to the dentist in about a year.  Why such a long gap between cleanings?

Kerri's Mind:  You people terrify me.  It hurts when you scrape around in my mouth and the anxiety just about kills me.  I hate coming to the dentist.  I'd rather take a plane ride.

Kerri:  Oh you know - I've been really busy with work and traveling home and all that stuff.  (Nervous laugh.)

Dental Hygenist:  Okay, well it looks like you have some build-up.  Let me just balance my elbows on your jaw while I dig around in here.  Then the dentist will come in and make you cry.

Kerri's Mind:  This is f-ing torture.

Kerri:  No problem.  Thanks.

I am long overdue for a teeth cleaning and a dental check-up.  I've been reading through the diabetes and oral care articles at work and they've made me realize that I need to get my arse to the dentist.  While I brush my teeth several times a day with my Oral B Super Jazzy Toothbrush, floss daily, and use mouthwash to prevent gingivitis, these at-home dental moments aren't a substitute for a real teeth cleaning.  I just have the world's most sensitive teeth and every moment at the dentist's office is completely uncomfortable. 

Is a fear of the dentist irrational?  I have to go, though, right?  My parents spent a fortune on braces ... I think I owe it to them to have a cleaning.  Sigh.

Diabetes, you force me to make responsible decisions sometimes.   Arghhhh!

Posted by Kerri Sparling at 11:36 AM | Permalink | Comments (17)

I received a letter today from Oxford Health Plans, denying my request for CGM coverage.  "Our Medical Director has determined that the request is:  Denied - Not Medically Necessary."

My First-Level Appeal letter is below.  This is the first round of a potentially long battle, but I'll see it through as far as I can, I promise.  A price tag on my health?  I don't think so.  Here's hoping they listen.

"June 17, 2008

Clinical Appeals Department
c/o Oxford Health Plans, Inc.
PO Box 7078
Bridgeport, CT  06601-7078

To Whom It May Concern:

On September 11, 1986, I was denied a normal childhood when I was diagnosed with type 1 diabetes.  My parents were taught to measure my food, test my blood sugar, and inject insulin into my body.  We were taught about diabetes complications and how they may end my life.  We were taught to plan for the worst and hope for the best.  This was my mortality, handed to me when I was just a child.

On January 27, 2003, I was denied the ability to control my blood sugars with insulin injections alone.  My medical team determined that my diabetes would be best controlled with an insulin pump instead of multiple daily injections.  Thanks to my hard-working medical team and my personal dedication to good health, I started using an insulin pump.  My A1Cs have been lowered and my risk of diabetes-related complications lessened, thanks to the benefit of this technology.

On April 15, 2006, I was denied the symptoms of a low blood sugar while I was at the movies.  Thanks to my years of hard work and my desire to keep my diabetes as well-controlled as possible, my body was less sensitive to the symptoms of low blood sugars.  Therefore, a blood sugar of 27 mg/dl snuck up on me without warning, leaving me moments from a diabetic coma.   Currently, I experience severe hypoglycemic unawareness, leaving my body at risk for potentially lethal, undetected low blood sugars.

On May 18, 2008, I was denied a wedding without diabetes.  Surrounded by friends and family, and with my husband-to-be standing proudly at the front of the church, I walked down the aisle.  My mother cried, later admitting she always feared I would not see this day in good health.  My blood sugar plummeted, without warning, before the first dance as a result of my excitement.  I did not feel the symptoms.  I spent my first dance with my husband clinging to his arm, trying to focus and waiting for the glucose tabs I had just eaten to raise my blood sugar.

On June 13, 2008, I was denied health insurance coverage for a continuous glucose monitor by Oxford Health Plans. 

I am twenty-nine years old and have spent more than two decades living with type 1 diabetes.  My wedding was barely a month ago.  I am so excited to start a family with my loving husband.  I will not be denied the chance to have a healthy pregnancy.  I will not let my mother be denied a good night’s sleep because she’s worried her daughter will have an undetected hypoglycemic episode in the middle of the night.  I will not let my husband be denied a healthy wife. 

A Dexcom continuous glucose monitoring system receiver costs $800. The sensors cost $240.00 for a pack of four.  Over the course of a year’s non-daily use, the Dexcom system will cost approximately $1,800.00.   

Compare this cost to that of laser surgery to treat diabetic retinopathy.  Or the cost for kidney dialysis or transplant.  Or the cost of daily medications to treat high blood pressure, cholesterol elevation, or kidney disease.  Or the cost of an amputation, as well as any attendant costs for rehabilitation and lifestyle adjustment.   Please be advised that keeping me healthy now will save your company from greater expense later; preventative measures taken at the present time will mitigate the overall financial loss your company would otherwise incur in the future. 

Denying my claim to protect your company’s bottom line is to deny my chance for a long and healthy life. You have marked my claim as 'not medically necessary.'  You have boldly put a price tag on my health. 

Your denial may cost me my life.  I urge you to reconsider your decision.

Sincerely,
Kerri Morrone Sparling"

Posted by Kerri Sparling at 03:30 PM | Permalink | Comments (43)

(This is a loooong post.  And contains many terms that I just learned today.) 

Dexcom and I are looking forward to being reunited (out of sensors at the moment), but before we can do our Dex-y dance again, I need to get this stuff covered by my insurance plan.  My contact at Dexcom put me in touch with their insurance management team, and they've been working hard to get the proverbial ball rolling.

I spoke with one of the reps earlier in the week.  She was very hopeful about insurance coverage, telling me she'd start processing the claim through Oxford Health (they are my insurance provider) and would touch base with me with the good news.  I laughed.

"Good news?  Let's be honest.  There's rarely ever any good news when it comes to insurance ... anything.  So let's assume they'll reject it, and we'll create a battle plan from there."

She laughed.

"Right.  A battle plan!  I'll contact you as soon as I have any new information."

True to their word, an email came in from Dexcom yesterday. 

"Hi Kerri,
We have not had any luck in getting other patients through Oxford. We also tried to go through a distributor without any luck. So, we are going to ask Oxford for a predetermination or "one-off" approval. We may need to come back to you for more information should they request it. We will keep pushing on our end.
Your plan does provide for DME devices (the DexCom products are a DME benefit). However, you have a $1,000 deductible, with $0 met to date. After that, your coverage is at 70%.
Thanks,
(Dexcom Guy)"

Posted by Kerri Sparling at 11:50 AM | Permalink | Comments (26)

Michael Moore gets people talking.  You don't have to like him and you can call him "un-American."  You can hate his films.  You can love his films.  The fact of the matter is that his films start discussions, and these discussions are necessary.

That disclaimer tossed out there, the film generated a big "sigh" from me.  The first half of it, showing images of people working three jobs to cover their healthcare expenses, negotiating "which finger to reattach" after an accidental amputation based on what a patient can afford, and the stress of making sense of insurance denials.  This portion resonated for me on several levels.  The battles faced not by someone without health insurance but by the Americans who have it.

I thought about my own insurance battles.  Like the hoops I had to jump through to have my insulin pump covered as a "medical necessity."  Or when insurance companies told me that "four test strips a day is enough for a type 1 diabetic," not taking into account any hypoglycemic unawareness, jaunts to the gym, or the need to know if I'm steady before going to bed.   I thought about the pump infusion sets I've used for more than their prescribed length because I couldn't afford the copays for an extra box of sets.  The phone calls to insurance representatives that include phrases like, "Um, I need it to live," and "I can't believe you're telling me, a diabetic, that testing my blood sugar isn't necessary."

Michael Moore makes several talking points that Chris and I talked about for the rest of the night.  Moments in the film where Moore illustrates how keeping a society blanketed in debt makes them more dedicated (desperate?) members of the workforce.  This was disturbing to me, as I thought about people I knew who worked 70 hour work weeks at incredibly trying jobs, just so that they can have medical insurance. 

The part of this film that I didn't like was Moore's blinders-on view of universal health care.  No system is perfect.  He made it seem as though after the film finished, I needed to grab my passport and go ex-Pat, heading off to France or Britain or even hopping the border to Canada.  I do think that countries practicing preventative care vs. acute care are far smarter than the reactive United States, but I don't want to pack my bags and trot off to France.  I would rather help change to happen within our own borders and take measures to fix a problem instead of abandoning it.  Aren't we a force to be reckoned with, the blogosphere?  Aren't we some of the voices that Big Pharma thinks about nervously, right before they fall asleep at night?

(Whoa, Kerri.  A bit idealistic today.  Don't you want to go to France?  They have unlimited sick days.  And government employees who do your laundry.  Stop humming "The Greatest Love of All ...")

I'm fine with doing my own laundry.  I'm fine with working hard and earning my medical insurance.  But I'm not fine with being told that my medicine isn't "covered" or "necessary" or that insurance companies would rather pay for my dialysis vs. my insulin pump.  Preventative care is what protects people with diabetes, keeping our potential diabetes-related complications quiet longer.  Being plucked for every cent we earn, or worse denied, for that preventative care is cruel.

Go see this movie.  See what gnaws at you. 

Posted by Kerri Sparling at 10:55 PM | Permalink | Comments (4)