Results and a New Diagnosis

What?  You DON'T post private medical information on the internet?

Phone call today after the appointment yesterday.  Keep in mind that although I love my doctor, their office does not have an A1C machine (what?!) and I always get my lab results the next day.  Bizarre, but what are you doing to do?

Seriously, the doctor's appointments have become "Hey, good to see you.  Still doing well?" "Fine.  Here's a study I want to join..." "Great!  How are the kids?"  etc.etc.

"So....Your A1C."

Pause, Pause..Anxiety level rising.

"What do you think it was?"

I had downloaded Dexcom data lately, I thought I had a good shot.

"6.8?"

"6.2!!"  He almost shouted it.  It was kind of hilarious.  "I mean, that's almost TOO low."

Oh, no, it's OK, I'll take it.  I don't think it's too low at all.  5.2 might be running too low, maybe.  But I'm perfectly fine with a 6.2.  Especially since I haven't had a ton of hypos.

WBC still low.  Whatever that means.

Cholesterol still high.  Like that means anything.  (Well, he thinks it does.  He asked me to compromise and take a statin once or twice a week, maybe?  Ok then, I'll think about it).

Thyroid function good.

HOWEVER.

This time we did a check for antibodies for Hashimoto's, as my sister has it, and my dad, and seriously, I think I do too.  I've gained a little weight and the fatigue level has ratcheted up a bit.

As it turns out, well yes.  Yes, I do.  I am apparently awesome at diagnosing myself.  (I knew I had diabetes, I knew I had Hashimoto's, this is just going to FEED the hypochondriac in me.  That's going to be awesome for everyone around me.)

And so the auto immune diseases add up.

So that's cool.

Actually, I'm perfectly fine with it, as I was totally and completely expecting it, and seriously, it's on both sides of the family, it was coming.  Also, apparently I love adverbs.

Anyone else miss School House Rock?  Just me?  OK then.

He doesn't want me to do thyroid meds yet, as the function was good.  Dr. Google has differing opinions on whether antibodies require meds or not, but since I pretty much feel fine, except for the fatigue, which isn't that debilitating, especially since I upped the exercise factor, I think I'll wait.  At the next appointment, if I'm 15 pounds heavier and can't get out of bed, there will be a discussion.

And then I hear it in my head "Why wait until you can't function? Get on meds now."  But I don't know what level they'd shoot for if my thyroid shows up fine at the moment. ?  I don't know how this works yet.  Probably the low wbc, cholesterol, and thyroid are all linked.  Because pretty much everything is linked.  Also, did you know Hashimoto's can cause vocal nodules?  Which I get?  Hmmm....Maybe it wasn't all my yelling after all.  Or..maybe it was.  Who knows?  Anyway, I'm fine not being medicated yet, but I know it will come.

But hey, my A1C rocked the house.  And he was pretty pleased with the lab work as a whole.

(In other news, I've sent all my pee to Faustman.  Waiting to hear from them.  Also, I want to get into the ViaCyte study in San Diego.  Like, with my WHOLE SOUL I want to get in.  I've called them twice, have yet to receive a phone call back.  Prayers, good vibes, positive thoughts that I get in would be appreciated. )

Onward and Upward!

So, remember my emails?  And my Faustman joy?

Well, all that took a slight detour when they couldn't access any HbA1C records before 6/2011.  They emailed me.  Did I switch doctors?  Where are those records?  Where can I find them?

That was when I was in the Protege study, and as they were running A1C records for the study, my endo didn't feel the need to repeat them.  I gave them the info, but was feeling fairly defeated, Charlie Brown, because really, I didn't know what the protocol is for studies giving up proprietary medical info.  Since I wasn't actually a patient at the clinic running the study, they couldn't just access the info from the computer, and I don't know if anyone was willing to dig through 3-5 year old records to find 2 or 3 A1C's.  I had told my endo what the A1Cs were, so surely they were in the chart notes, but I didn't know if chart notes were sufficient.  Especially chart notes that just wrote down what the patient told them.  I could have been a dirty, rotten, stinking, liar for all they knew.

Plus, there's that whole "I was in another drug study" thing I had to contend with, and typically, drug studies don't like patients who have been in other studies, it tends to ruin the 'general population' dealio they've got going.

BUT I HAD THE PLACEBO!  I SWEAR!  (I really did.  I was fairly ticked about it, too.)

(And while I knew this would come up, it's not like I wasn't going to tell them I was in a study, I was worried I had derailed this before it even began).

After that, there was radio silence.

And today, a box shows up.  I look at the return address.

I have made it to the urine portion of the study.  To gauge c-peptide production, I am to pee once a week, into a cup, after drinking a Boost, and send it back to them.  This is a box of shipping materials and Boost drinks. I must be fasting for 8 hours before drinking the Boost, and empty my bladder right before drinking it. Did you know they could test c-peptide in urine? Well, they can.

I've never been so excited to pee, store, and ship urine.  In fact, I do believe this is the ONLY time I've ever been excited to pee, store, and ship urine.

Let's see if I still have one or two beta cells, shall we?

So, I've had some cool emails lately.

"Dear Heidi,

Our records show that as of September 2013 your pancreas was still making some insulin. We measured amounts of c-peptide in your blood and the concentration was 12.57 pmol/L."

WHAT.

Also,

Back story - In September 2013, I went to Faustman lab and donated blood for the study. I guess I didn't blog about the trip.  Sorry about that.  They seemed more excited to get my husband's blood at the time (they wanted a non relative with no auto immune diseases for the control group.)  But hey, they were great and it was a fun little trip.

And THEN this weekend I got an email saying "We would like to obtain your HbA1C's for the past five years to see if you might be good fit for the first group of Phase II."

Which led to me sending them my permission to do so, and a request for my c-peptide results. Which led to me being a minion.

As you can see, they were acceptable.  Hopefully I still have some.  It has been 9 months, after all, and though the a1c's have been ok, they could be better.

They use an ultrasensitive assay of C-peptide to assess residual beta cell function, with a detection limit of 1.5 pmol/L.  She attached a paper explaining it.  Here it is if you want to read it.

And thus, we wait.

But this is good.  This is very good. Onward and upward and all that.  Yes, this is the lab you all donated to for my 4 year diaversary.  Thanks again!!!  See what's happening because you dropped $3?  SEE??

(link to the phase 2 trial.)

Adventures in Dentistry

OK, so the dental office my insurance covers?

Terrible.

My copay there?

Awesome.  As in, $5.  I will put up with a lot of terrible to get a teeth cleaning for $5.

Hello, I'm Mr. Lincoln.  I will be your dentist today.

And believe me, I have.  I've had a 10:00 appointment, only to finally get in the chair around 12:30, only to be told we needed to reschedule because my hygienist had gone to lunch.  Pitched a fit, different hygienist squeezed me in, and I insisted I only be put with her from that point on (didn't happen).

I've been told my teeth are "weird."  I've been called in between appointments to see if I wanted that crown we talked about.  Apparently my large filling should be a crown, and it should be a crown yesterday. I've had the hygienist complain that I have wisdom teeth, because, whine,  "they're so hard to floooossss".

(My husband can't stand the place and hasn't been back.  My kids go elsewhere because they should grow up liking the dentist as much as possible.)

But I can have a bad day once every six months, because....CHEAP. I can put up with waiting if it saves me hundreds of dollars.

Last time I went in, it was beyond my ability to "suck it up for the savings."

I had the cleaning, (different hygienist). I had the x-rays.  Then the doctor walked in.  It was a different dentist than I had seen before, but this is one of the practices that just puts you with whomever, continuity of care be damned. (The turnover is also high.  I don't think people like working there any more than patients like going there).  He started spouting off tooth numbers that were bad. I was told I had multiple cavities.  That crown was urgently needed, and the fact that I didn't have it done yet is bordering on negligent.  One of the bad cavities was in my wisdom tooth, and there was really no reason to fill that, because "you don't want to put any money in your wisdom teeth, do you?' and was told I needed those out stat.  He started recommending oral surgeons. By the time he was done, my mouth was in dire straits, and this was going to take a village to fix.

Hint: Do not Google image "bad teeth."  

Embarrassingly, my eyes welled up a little.  Still, I found my voice. "Six months ago, everything was fine. You do not go from fine to major problems in six months."

He looked at me, seemed surprised that I was upset at all, and said "Look, it's your choice as to what to do here.  You can choose to do nothing, but these are the problems I have diagnosed.  These are DIAGNOSABLE problems (he was just the dental Dr. House, I guess).  It's just ridiculous that you have wisdom teeth, there's no reason at all to have them, etc. etc."

He walked out.  While I was still in the chair trying to grasp this, the hygienist handed me a coupon for $50 off your next dental service, and said "Did you want to schedule that surgery now, Heidi?"

Surgery. With Type 1. No. No, I did not.

I walked out to the checkout station, and she printed off no less than 4 "stages" of work I needed done, and which thing I should do first, wisdom teeth, etc. and then she took one look at me, with my fighting back of emotions, and said "Let's just schedule your next cleaning. You can take some time to think about what you want to do."

OK.  Let's do that.  But I can guarantee you I'm not going to keep that appointment.  I paid my $5 and got out of there. I might have cried a little in my car.  Not telling.

That was in September.  I did nothing about my teeth, except worry and ask dental friends what they thought of wisdom teeth. In March a reminder email showed up.  I clicked that I would not be there, they called, and I told them I was never coming back.  Still, I wondered.  Maybe I was screwing myself over.  I do have diabetes.  I do eat candy in the middle of the night and don't brush afterwards.  My sugars do go high, and that's got to be affecting things.  I do drink diet soda by the gallon.  Maybe I desperately needed that crown.  Maybe I had cavities that were getting worse by the minute.  Maybe I now had a new thing to get all "anxiety girl" over.

So I finally called my kid's dentist and scheduled an appointment for me.  I walked in, explained how another dentist had found issues, but I needed someone I could trust, and hoped for the best.  I was worried that this was going to be pricey, and I had just made everything worse by waiting.

No cavities.  Let me repeat that.  NO CAVITIES. That tooth that needed a crown?  Yes, eventually it will need it, but they're not even going to put in on a watch list yet, because it's very stable.  It'll likely be years before it's necessary. My wisdom teeth?  Look great, no there's not a big cavity in one, why would I think that? - and there's plenty of room.  They're just like any other tooth, and I can keep them as long as I want.

Both the dentist and hygienist were like "Your teeth look great.  Just keep doing what you're doing."

And I said "I drink a lot of diet soda.  That must be it."

Then they laughed, out loud, for a long time.  Oh yeah, diet soda is the way to go when it comes to teeth.  Of course. (They don't really believe that, just in case you were wondering).

Yum.

Did I want to schedule another appointment?

Yes.  Yes I do.  Some things are worth more than $5.

Mantras and More

Day 4.

The prompt is:

Today we are getting back to the positive with our topic Mantras and More. Yesterday we opened up about how diabetes can bring us down. Today let’s share what gets you through a hard day? Or, more specifically, a hard diabetes day? Something positive you tell yourself, or mantras, or what you fall back on to get you through. Maybe we've done that and we can help others do it too?


OK, then.  Here you go.



Just keep swimming.  

Also, this.



You're going to be OK.

Also, this.

Can't tell you often that tree has seen me through.

Just keep swimming.

Having a bad diabetes day?

(Part of me wants to get this and put it up in the bathroom.  I won't, though.)

More links here.

Diabetes Blog Week - Better Late than Never

OK, so I should have been blogging all week about various topics on diabetes.. I haven't been doing that.

But here's the prompt for today - 

May is Mental Health Month so now seems like a great time to explore the emotional side of living with, or caring for someone with, diabetes. What things can make dealing with diabetes an emotional issue for you and / or your loved one, and how do you cope? 

This is a rough prompt,  and I don't think I will go fully down that rabbit hole.  There are a whole LOT of things that make living with diabetes an emotional issue for me, not the least of which is diabetes itself, when high blood sugars make you burst into tears at the grocery store because well....THE GROCERY STORE, and when low blood sugars make you eat everything in sight to keep the terror at bay.

Keeping the terror at bay is hard.  

But here's a conversation I had tonight that sums up PART of what makes it an emotional topic.

Husband: I brought home pizza.  I also got you a salad because I know you're not a big fan of pizza.

Me:  I'm a fan of pizza.  It's diabetes that doesn't like it.  And it's a very demanding roommate.

And there you have it.  I have an uninvited, demanding, expensive roommate.  One that will never leave. One that demands I eat salad over pizza, even when I don't want to.  And should I choose that pizza, there WILL be consequences.  This roommate keeps me up at night.  Constantly.  It calls me all day long. beeping and buzzing and not letting me just be BY MYSELF FOR ONE MINUTE?   It's basically a demanding toddler that will never go away, and it's sucking up my vacation funds in the form of test strips that get everywhere. Seriously.  This roommate is MESSY.  It never cleans up, it never contributes to the bills, and I can't kick it to the curb.  

And really, I'm an introvert.  College is over.  I don't need any roommates.  The only ones I want in my home are my family members.  

The permanence makes it rough.  How do I make peace with something that won't end?  

I have no idea.  If you do, let me know.

More d-blog links here.  Thank you.

EYES

Went to the eye doctor a few days ago.

Got reprimanded that it had been "almost 2 years!!!!" since I'd been there.

I think mostly the tech was mad at me because as soon as they called me back, and I walked into the first room of 3, and it was 9:45 in the morning, and I said  - out loud - "It smells like nachos in here."

I probably shouldn't have said that.

Because after I looked around for said nachos, wondering if there was a break room nearby or something, it's highly likely it was her breath.

Whoops.  But seriously, who's eating Mexican food that early?  And you know looking at eyes is close work, right?  You can't pop an Altoid?

So then I got the reprimand of not being there since AUGUST 2012!! And it's now APRIL 2014!!  Clearly, I could have suffered horrible eye diseases and I am so lucky I wasn't struck blind between now and then.

Which, you know, is probably true.

Then lots of tests were run and drops were adminstered, I sat there and listened while the dilation was starting.

She was charting, and I hear her talking to herself as she writes, and she says "OK, DM 2....blah blah this..."

And I interrupted her.

"DM 1."

She was flustered and confused as she looked up.

"What?"

"You said DM 2.  That stands for Diabetes Mellitus 2.  I am a Type 1.  You need to write DM 1."

"Oh, Ok.  I just am SO USED to writing DM 2."

"I'm sure that's true, as it is more common, but you should ask before you chart something like that."

(And honestly, I've been going there for years, it should already be on the chart if you looked back, nacho lady). (But maybe somebody charted it wrong already and she did look.) (I don't know.)

And frankly, does T1 v T2  matter that much at the eye doctor?  Eye problems can plague all diabetics, so type probably doesn't play into their treatment at this stage.

This stage being:  MY EYES LOOK AWESOME.

So there.  See you in a year.  You know, if I remember.  Which I probably will.  I'm pretty good about that. Usually.

Also, I really should not drive after dilation.  They should really have a recovery room where you sit there and listen to music for a couple of hours before they just let you out on the road like that.

Oh, and I went out for tacos afterwards.  For some reason Mexican food sounded really good.  And it was.