Friday, January 27, 2017

8 years.

Today is my 8 year diaversary.  I didn't even remember until Facebook reminded me. Anniversaries are weird things.  Sometimes it knocks me out and I can't stop reliving diagnosis, sometimes it's like "meh."  

What?  Just because I go practically an entire year without posting doesn't mean anything.  It's been quite the year.  And I am pretty much under a gag order when it comes to talking about my participation in the Faustman trial, so I can't tell you much, except that Boston is pretty cold most of the time.  Also, really far from Tucson. 

My primary care called and said I had to go back in since I haven't been in years. So I did, in which case the Nurse Practitioner pulled up my chart, and said "It looks like you've been seeing your endo regularly.  Look, you just got your eyes examined.  You're clearly seeing doctors. Why are you here?"

"Bureaucracy?  Insurance?"

"Ok then."

I actually have an endo appointment next week, so the Primary Care ran all the labs for me so it'll be nice to just discuss the results.

A1C was 6.6  I was THRILLED.  Downloading the Dex after Christmas showed an estimated of 8, so I had to kick the new year in the butt and really focus more.  I had been running high and having major spikes and pretty much doing the minimum to fix them. So I was glad to see the butt kicking I gave myself helped.  Also - A1C is truly heavily weighted by the last few weeks.  If this had shown my Christmas numbers....

I have decided the secret to diabetes control is pre-bolusing (which gives me major anxiety) and water.  So much water.  I hate water.  It is not delicious.  But it helps. 

I would prefer this to be Diet Dr. Pepper.


However, my urine (what?  I talk about pee a lot - diabetes, you know) showed elevated microalbumin.  (around 54 - they want it below 30) I am not sure exactly what that means except that my diabetes is affecting my kidneys.  I will have to discuss this with my endo.  Dr. Google says the treatment is blood pressure meds.  I have super low blood pressure. I'm worried that if I add an ace inhibitor,  I'll become the incredible fainting girl, and I really don't want to be passing out everywhere I go.  It doesn't sound fun.  So we'll see.


All other labs looked good.  She didn't run a lipid test, so that'll be run later.  Thyroid is good.  

See y'all in a year.  Peace out. 

Tuesday, February 16, 2016

MUST...BLOG...PHASE...2..AND YET..

OK, folks.

I'm IN!

I am a member of the Faustman Phase II trials.  I went there, I got screened, and I'm IN.

I am supremely happy about this.

Here's a picture of happiness.

Also, I love this song and this show.


I will say this, however -

I signed a paper that said I wouldn't talk too much about it on social media or blogs, etc. so I am very limited as to what I can say.

Of course I can tell my friends and family about it, but they want the internet presence to be limited, as as not to compromise the study in any way.

Which makes me a little sad, because I wanted to blog EVERY STINKING DETAIL, mostly so I can bore you all to death, but also REALLY mostly so I can remember it all.  But I can't. So this is what I will say.

Boston is cold.  But it has good Italian food.

I will be traveling there, often leaving at unheard of times in the morning, because it is far away.

I want the REAL DRUG.  GIMME. It's a double-blind, so we don't know what I will get, but I know what I want.

You can read about her research on Faustmanlab.org.  You can also donate money.

They're still recruiting, so if you want to join me in my coolness, shoot them an email.

I got to meet Dr. Faustman.   Here's a picture to prove it.


I should have put makeup on.

That's it!  Send good vibes that I get the DRUG.  I want the DRUG, peeps.

Studies,  They're fun.

(Also, I went to the endocrinologist a couple weeks ago.  Labs were good - a1c at 6.7 - LDL cholesterol down to 138. Thyroid still fine. Yay.)


Wednesday, August 26, 2015

For those of you who keep asking...

...what's the deal with the Boston thing?  What's up with your trial?  How's it going with Faustman?

Here we go.

I sort of know what the deal is.  Kinda.

I received an email ("Dear Trial Participant") (I was really happy to see that greeting) with details and such.  However, the main detail, as to when I will start, is not yet set in stone.

They are beginning the "screening visits" in October.  They do have 150 people to screen (at least!) so I have no idea if I will be going out in October or if it will be later.  They also included a schedule of what the visits will be after that, should I pass the screen.

I really really want to pass the screen.

REALLY.

I have to have my c-peptide at a certain level to do it, so let's all keep our fingers crossed for that.  Prayers, chants, dances, whatever you got - I NEED TO PASS THE SCREEN.

After I pass the screening visit (see what I did there?) I will have to spend some time in Boston, in the winter, during a crazy El Nino year.  That should be fun.  Hopefully, the travel times aren't during crazy storms or anything.

I went and got TSA pre checked to make my travel experience better.

I will need a coat.  A good one.


And here's a cool video about her and this trial. It's long, so settle in, but she is AWESOME and I'm excited.  (2000 emails a week!  WHAT?! And I'm on the short list? SO EXCITING.)






Sunday, July 19, 2015

Whiny, Self-Indulgent, First World Post About Clothes

You can't say I didn't warn you in the title.

So, here's the deal.

I hate everything in my closet.

I didn't used to.  Well, scratch that.  I DID used to.  Then I went out with Alicia from chiconashoestring, and I learned how to dress for my body type, how to shop, and my world was turned upside down.  It was amazing.  I highly recommend her.  I won't go into everything, but she taught me a lot, and a light bulb was turned on, and I thought that light would go on burning, and this was one area of my life I had finally figured out.  It's good to have one area figured out, you know?

Suddenly I liked what was in my closet.  I liked shopping.  I could walk into a store and instantly know what would work on me and why. I could grab virtually anything in my closet and feel comfortable and put together.  I was living the dream.  LIVING THE DREAM, I tell you.

So why am I back to the nightmare now?  Why do I walk into my (newly done, beautiful) closet and just sigh as I stare at the organized hangers?  I am not sure, but I have a theory.

It's all about fit.

That was one thing Alicia taught me, and taught me well.  The main reason I didn't like my clothes were because they weren't fitting me well, and not doing anything for my figure.  They were all mostly too big, too boxy, or just wrong for my body type.

So out they went.  And shopping became a joy, and I finally understood why women liked it.  I lived the dream for years.

Now I have gained about five pounds.  I am not complaining about this, I probably needed to gain them, and this is NOT a post about "oh, me, I'm so fat now, how will I ever 'lose the weight?'"  NO.  That's not what's happening here.  I am not heavy, and the five pounds don't really bother me, and I have no plans to lose them.

EXCEPT - they make it so my clothes don't fit anymore.  And THAT's what I don't like about them.  The pants are just a little too tight.  The shirts tug in places they didn't used to, "uniboob" appears every now and again. The skirt shows a slight bulge. And it's annoying.  So I pull on a favorite outfit and tug and pull, and sigh.

I now see the allure of wearing yoga pants every day.  They fit no matter what.  My boss won't go for it.  I know - I've asked him.

I have a (slightly) new body type, and I don't know how to shop for it.

Also -  I have had these clothes too long.

You know the theory of how you're only supposed to keep things that 'spark joy?'  That a few pieces that you love are far better than lots that you hate?  I am a firm believer in that - buying something because it was two bucks at a thrift store that you never wear is not doing you any favors. So I have tried to keep it to a few things I really love.

However, I am getting tired of these things.  (Except the good jeans, I could wear those every day until I die.  Again, my boss is not a fan.) They 'sparked joy' for a long time, now they're just the 'same old - same old' plus now they fit funny and so I am tempted to throw everything from Target into the cart just to finally have something different.  And so I do. Then I don't like what I just bought.  So my closet becomes a mish mash of old "joyful" things that don't quite fit anymore and new "possibly trendy but do I really like them" things that don't really fit well either because they were bought on a whim. It's not a great mix.

Let's also not forget that my taste runs to old lady. I've always been a tad sensitive to it.  I'll grab something that I think is cute and have to ask my friends "Is this old lady?"  And  you know, sometimes I get the nod.  You know the one.  The "I hate to be nodding but it's for your own good" nod.  The one that says "step away from that neckline".  But....why is it in this section of the store if it's old lady?  Just...Step away.  Don't pick it up again.  We'll pretend you didn't like that.

Nothing like having your daughter inform you that you look like a Grandma and then have all your facebook friends say - yeah, maybe.  I don't know how to get out of my old lady rut.  Maybe I just have to say - I'm an old lady.  Deal with it.

And since I can't afford to run out and replace everything I own, and am not even sure what I like anymore, I don't really do anything about it.  Also, I can't ask Alicia because I don't live in Utah anymore.  I  just sigh and tug and whine.  I have friends come over and go through my closet to convince me everything in there isn't heinous. That worked for about a week.  But there are days when I wouldn't be sad if a small house fire destroyed all my clothes, and I had to get new ones.  Of course, I wouldn't know which new ones to buy.  I don't know which stores to go to anymore. They'd all be way too young or way too old for me, nor would they fit me correctly.  I need a whole new tutorial on what my body looks like now, and better yet, what it will look like in the future.  I'm not exactly "youthening" you know.

This, my friends, is the definition of first world problems.  I know it.  But you know 'we do get judged and judgment matters."  (Did you know that women need more sleep?  I love that) Still, I think I may have to go donate to a third world country just to make up for the guilt of whining about clothes.

Also, diabetes sucks.

The end.

Thursday, July 9, 2015

Always Answer Your Phone If It's a Boston Number


I got a phone call this week. It was from Faustman.  They were going through their database and I fit the profile for people who can be in Phase 2, and they were just wondering if I was still interested.

Let me think about that.


So it has been a while (2013) since I had given blood, so I still have to pass the initial screen, but my levels were at 20 before, and they need them above 5, so they're fairly hopeful. The gal said something to the effect of  "you've only had it six years - I'm sure you still have something."  Let's hope you're right.  I didn't ask about the urine I sent them.

I literally know nothing else.  They want me to fax them my latest A1C, and I told them I had one coming up this month, so they want that.  They will call me "in about a month" to set up my initial appointment to screen me and PUT ME IN PHASE TWO.


I don't know how long I will have to be in Boston, or how often, or who pays, or any of that lovely stuff.  I don't care.  I will work it out.  Where there's a will, there's a way.

In other news, the Invokana isn't being nearly as good as it used to, I don't know if I just slacked off in control or I got used to it, or what.  I did have a day where the pump was being wonky, (I ended up getting it replaced) and I don't know if it was solely that, or the drug as well, but I had some fairly serious ketones - I don't remember feeling that nasty in a long time.  The nausea was intense - I drank gallons of water and it took a day and a half to have them disappear completely - it was the first time in a while I seriously considered the ER. I cancelled my evening plans and peed on those ketone sticks every 15 minutes, watching them go from "very large" to "large" to  "medium" back to "large" and then "medium" , eventually "small"...SO FUN.

Plus, the drug is over $400.  I have a savings card that makes it free, and  that's supposed to be good for a year.  But this last refill they called and said I had to get preapproval, so I don't know what's going to happen when I show up to get some today. I'm not paying over $400, even though I still like the drug.  It does have an increased of risk of DKA, and it does make me pee, but my post prandial spikes are better.  It also is supposed to increase your cholesterol, and you know how much I hate my statins.  We shall see if this is a long term thing.  

But I do have to adjust my nighttime basals, I'm going low consistently, to the point of if I don't fall asleep at least as high as 180, I know will wake up with a low - potentially a bad one.  Right now if I am normal when I go to bed (which, you know, is ideal), I use a decreased temp rate to fix the low.  It does, so what I really need is to just go in and adjust them.

The real news is:  Faustman.  Wants me in phase two.  

  






Saturday, April 4, 2015

I Like New Drugs and I Cannot Lie

YOU GUYS!

Seriously - GUYS!!!!!  This week, brought to you by Invokana.

I'm on a new drug.  (One that makes me feeeel, like I feel when I'm with yoooooouuuuuuuuu....)

This is Huey Lewis.  Because I'm old.


And I have been on this new drug for exactly one week.  I started it on a weekend so in case it brought on a bunch of new lows or something, it wouldn't happen while I was driving on I-10.  Safety first.  (You can dance if you want to...)



Let's look at the difference, shall we?

Ok, so I have the current week and all the weeks before.  Let's keep in mind that I knew my doctor's appointment was coming and so I have been busting my butt trying to keep things in range.    

Average Blood Glucose last week: 158.  
The week before that? 162.
 Before that?  174.
And before THAT it was 193 - you can see the effect butt busting has on my sugars.

Average Blood Glucose this week? 139.

This includes literally no exercise and munching of Frosted Mini Wheats by the handful without bolusing.  Like I say, I don't see the doctor for four months, I can relax a little.  (Which is terrible, feel free to judge me harshly for said attitude.)



And the number I care a lot about, and if you have a Dexcom, you will know about this.

My Average Standard Deviation -this shows basically how big the swings are - for example - a SD of 50 means your average might be 100, but you are swinging between 50 and 150 to get it.  Make sense?  So....smaller is better.  Means tighter control.  Less impact on your body.  Less "roller coaster".





Average SD last week: 43.
Week before that: 54
Before that: 61
You see where I'm going with this?

Average SD this week? 39.

That is AWESOME.  Below 40 is super hard to get. And again - with no change in diet, exercise, stress, any of those bug a boos that attack your sugars so dreadfully.  What I did change?  My I:C ratio.  I upped it to avoid lows.

So an average blood glucose of 139 with a less than 40 SD?  Means I am seeing a LOT more numbers in my target range.  A LOT,  In fact, almost ALL OF THEM.  (but not QUITE all, because I still have diabetes).

So to go from an average of 174 with a SD of 61 (so basically 113 to 235) to 139 with 39 (so 100 to 178) with the addition of one pill is spectacularly awesome. I used to hit that 200 beeping range on Dex multiple times a day.  Now if I hear it once a day, I know it'll only be there shortly, and I have far more "no hitters" than I ever did.

Also, did I mention that I changed my ratio from 1:12 to 1:20 - based on recommendations from my endo that I might go low if I don't?  Did I mention that 100% in range fasting numbers - and the straight lines on my graph as I wake up and look at my night?  No?  Well, I'm mentioning them now.

Am I off the pump?  Of course not.  Do I still count carbs?  You betcha.  Do I grab random snacks and worry a lot less?  I do.  Do I pee more?  YES.  Is it worth it?  YES.




See how often I'm in target range?  And this is with a high target set at 160.  If I change it to 180, literally 10% is out of range.

Have I gushed enough?  This post is getting long.

Do you know what this feels like?  I will tell you.....

HONEYMOONING.

And it's still too early to say, I don't know if your body gets "used to" this drug or not, but a drug that gives you your honeymoon back?  I'm in!
ht: diabetes mine

Tuesday, March 31, 2015

Endo visit - here we are again.

Ok peeps - my life has changed DRAMATICALLY since my last endo visit 6 months ago.  I mean, okay, well, not that dramatically, I mean, I didn't move, or get divorced, or survive a tsunami or anything.

I got a full time job and re-entered the work force after roughly 15 years at home.

My husband left his job to pursue his own business, for the second time in our marriage.

My father got diagnosed with pancreatic cancer.

My dogs peed in the house. (Oh, wait, that's not that different).

Anyway, when he looked at my Dex and said "You were running high on Friday - wait - all weekend you were high - do you happen to know why?"  All I could say was "stress."

This is my "My dad has cancer and my husband has no job" blood sugar day.

But honestly, most of that isn't all that stressful.  I enjoy working, always have.  I missed it, and am happy to be back, and I like my coworkers and company. I know my husband is going to rock in his own business, because frankly, he's done it before.  My dad having pancreatic cancer....well, that one just sucks.  I got nothing.  Can't even offer him my own shot pancreas.

So with days like this, I anxiously held my breath for the A1C.

It came back.  6.7%.  I was really surprised.  Sitting in an office all day is far different from chasing your kiddos around the house, and heading to your friends to work out, and cleaning up daily, and etc etc etc.  I really thought it'd be closer to 7.2, especially with all the spiking.  Seriously, sugars were spiking constantly.  SPIKE!  It was like an episode of Buffy constantly.  I kept waiting for Drusilla to show up.

Also, I learned that taking cholesterol pills faithfully and working out for  - oh, approximately one week - right before your doctor's appointment truly pays off - as my LDL was 140, when last time it was over 200 (not the whole cholesterol - just the LDL).  So he's good with my sporadic taking of the pills.

"Do you take cholesterol pills?"

"Sometimes."

"Oh right, you're like me!"

And so it goes - we've officially added another pill - and this is one I will take.  It's called Invokana, and even though it's approved for Type 2's, he's giving it to a bunch of his Type 1's and loving the results, and he wanted me to take it last time, (well, technically it was Farxiga last time but they are pretty much the same thing, and nobody cares about technicalities so I'm not sure why I mentioned it) but last time I felt like I was doing fine with my 6.2 and didn't feel the need to add an expensive drug.  Yeah, I was cocky.  The diabetes universe doesn't like that. Also, the people on that Invokana website freak me out.


My sugars for about a week.  Super in range, right?  No spiking at all. Where's Buffy when you need her?

So now I wanted something to help with the spikes.  Something other than pre-bolusing, which, let's face it, I suck at.  Even though I know it helps.  I just can't get over the fear of it.  Something in me just won't bolus unless food is less than 5 minutes away, which makes literally no sense, because the kitchen isn't going anywhere, and hopefully one day I will get past it and bolus when food is 20 minutes out, but you know what?  TODAY IS NOT THAT DAY.

And so I get this drug.  And it punishes me by making me pee.  There are days when there is literally no difference, and days where I feel like I'm pre-diagnosis, running to the potty every 20 minutes.  And that's what it's supposed to do, and it also rewards me by helping with the sugars.  It definitely helps.  I haven't had to monetarily pay for it yet, still using the samples he gave me, and I'm sure I will cry a little at the bill, especially since we switch insurances tomorrow and all that lovely work I've done on my deductible is now gone.

Medicine is expensive.  In other news, the sun rises in the east.

Oh, and he examined my feet.  Had some trouble locating the pulse in my left foot, which doesn't surprise me at all, because that foot feels numb on one side a lot and if there's any circulation issues or nerve damage, that's where it is.  Right foot is totally fine, though.  Strangeness.

Thyroid still fine - no need for meds there yet.

And so I get to see him in four months, because he wrote "3 to 6 months" on the check out form, and that's what the receptionist came up with.  So that'll be fun.

See you all then!  Peace out.