UPDATE ON THE FUNDRAISER/GIVEAWAY

It has come to my attention that when donating to Faustman labs, there is a place to enter an alternate email, and they say that a notification will be sent to that email.  I totally spaced that. mostly because every time I've donated, I've never felt the need to let somebody else know.

It came to my attention because somebody I know entered my email in that spot instead of forwarding me her receipt. Then when I did not respond, she wondered what her ticket numbers were.  I hadn't received a notification of her donation.  I am not sure when MGH sends those notifications, but it would appear that they are not automatically generated.  I'm guessing they do it once a month?  I am not sure.

So,  if you have donated, but have not received an email from me with numbers on it, please forward me the copy of your receipt so you can be entered to win the Ipad mini.

Here are the steps:

1. Go donate.  Every $3 gives you one "ticket" number.

2. Receive receipt. (This IS automatically generated.  You will get a lovely notice about how you are keeping medicine alive and whatnot).

3. Forward me the receipt.  (Your credit card number is NOT displayed.  I will not spam you.  I am a nice person.)

4. My email is heidithewiz at gmail dot com.

5. Receive email back from me with magic numbers on it.  (They're not really magic. No beanstalk will grow if you plant them.)  I am fairly good at emailing back in a good time frame.  It shouldn't take more than a few hours.

6. Keep receipt for your tax records.  Deduct amount next year.  You know, if you remember.

7. Come back to my blog on Monday to see if your numbers actually were magic and caused an ipad mini to appear in the mail.

This giveaway closes on SUNDAY, FEB. 3 at MIDNIGHT (Arizona time).  At that point, I will put all the numbers into random.org, and display the winning number, along with the winner's first name and last initial.  As in "Congratulations go to #0 HEIDI K." (Which I won't actually say, because that's me, and I'm not winning my own contest.  That would make me a NON nice person.)


SO BASICALLY, IF YOU HAVE DONATED BUT NOT RECEIVED ANYTHING BACK FROM ME, PLEASE EMAIL ME.


The end.

See original post here.

How exercise leads to death, OR the circle of life in action

Around 9:30 p.m. my husband decides it's a good time to workout.  Hey, you do what you have to do.

"Want to work out with me?"

"No.  I can't work out this late.  I'll go hypo all night."  (Diabetes as excuse.  Nicely played.)

He begins his insanity.  I continue to play games on my phone. (I'm really good at Scramble.  Want to play?  I will destroy you.)

"Can you find the remote for the ceiling fan when that round is done?"

(staring intently at my phone)  "Sure".

After my round is done, I totally forget, and like a good wife, leave the room to get some water.  My sugars were a little high, and I was thirsty.  Then I remember like an ACTUAL  good wife, and so I go back in to get the ceiling fan going for him.

The outside door was open.  (We live in Arizona.  It's acceptable to open doors in January.)

He's there doing his jumping jacks and all the other whatchadoos and stuff.

"A bird flew in.  It's either in the corner or Suzy is eating it." (he continues his squats and pushups)

"What?  There's a dead bird under here?"

"Not (puff) sure. Check the (puff) corner."


Suzy is one of our dogs.  I don't want to get too graphic about what was under the bed, but let's just say the score was easily Bird: 0.  Dog: 1.

Hello.  I'm cute and cuddly, and apparently I like to kill things.  

And still, he's working out.

I feel I have to make a statement.

"I AM NOT DEALING WITH A BIRD CARCASS UNDER THE BED."

And so he stops, and we remove the mattress, box spring, maneuver the bed, and proceed to clean everything up that was under the bed.

After, of course, luring the dogs outside. (She won't come out! Get a piece of meat!  She's EATING a piece of meat! Ew!)

Then I felt the need to dust behind the bed and under the mattress, because, seriously, we never clean that, and then voila!  Order was restored.

I feel slightly responsible.  After all, if I'd just found the remote sooner, the ceiling fan would have been on, and the door would have stayed closed. The remote did end up being on the floor right by where hubs was working out, but that's not really the point, now, is it?

Thanks for listening.  And don't forget, there's still time to win the ipad mini.  To quote my cousin Alison, if you win, you can name the mini Cooper.

Fundraiser/Giveaway/Happy 4 Year Diaversary to Me.

OK.  It begins.  I have a goal this year to raise money for Faustman labs.  I chose the 4th anniversary of my diagnosis to do it.  I have been cheating death for 4 years now, and I would really like it if all Type 1s could just go back to normal living, without the feeling with every shot that we're basically on "borrowed time."  I think Faustman has the best chance of doing this, and so, here we are.

My husband's company has kindly donated an ipad mini to the cause.  It can be yours.

I know, it sounds spammy, but it isn't.  Here's a pic of me holding it. Don't we look cute together? I will mail it to you, possibly. Exciting, isn't it?  Do you feel the excitement?

(Don't ask me why I'm not smiling.  More drama, possibly?  I don't know.  It is what it is.)

So, here's how it's going to work.  You go to the website and donate.  For every $3 you donate, I will assign you a number, a virtual "ticket", if you will.  So, if you donate $9, you get 3 tickets.  However, if you donate $10, you still only get 3.  The extra dollar is just because you're nice.  So, if you donate $50, you will get
16.  (But if you go up to $51, you get 17). Basically, take what you donate, divide by 3, and voila.  There you have it.

Once you donate the money, Massachusetts General Hospital will email you a receipt.  This is automatically generated.  I have received several of these receipts, and I know what they look like.  Your credit card number is not on it.  As proof of your donation, you need to forward me a copy of this receipt.  Please send it to heidithewiz at gmail dot com.

Once I receive your email, I will email you back telling you your number or numbers.

That's it.  In one week from today, on February 3rd, I will use random.org to generate a winner.  I will then announce the winner, and mail you the ipad mini.  (Assuming that you're the winner.)

This is in time for Valentine's Day, so if you want to give your sweetheart a really cool gift.....I'm just saying, s/he would be impressed.

A few extra things.  Your name and address will be on the receipt. I'm sorry if that makes you uncomfortable, but if you win, I would need that info anyway to send you the ipad.  I promise I am not building a mailing list.  I will not spam you.  Massachusetts General will not spam you.  (I even signed up to receive email updates, and I don't get very many).  Please do not pay pal me any money. I am not a non-profit, so you need to send it directly to her. I don't want your money, I want Dr. Faustman to get your money.

Also, please keep your receipt, as your donation is tax deductible.

I am told to be as legal as possible, I have to have a "no purchase necessary" option.  And so, if you would like a number and be entered in this giveaway, but don't want to donate, please write me an essay of at least 300 words about diabetes.  For each essay, you'll get a number.  Please do not send me the same essay repeatedly.  I am trying to raise money here, people.  I am trying to make the no purchase option necessary as sucky as possible so people find it easier to give three bucks.

Stats on the ipad mini:  It is the 16 GB, WiFi only option.  It is black.  My son wants it.  He doesn't get it.

Odds:  I have no idea.  Depends of how many people enter, and how much they give.

So there you have it.  Please enter, and May the odds be ever in your favor.....

Thoughts on Breakthrough:Elizabeth Hughes....et al

SO.  I finally read Breakthrough.  I have been wanting to read this for awhile.  It was an emotional read for me, and I'll probably force my book group to read it, although they might get bored.  Talking/reading about diabetes doesn't get boring for me.  I'm diseased that way.

I have many, many thoughts on this.  I will try to organize them, but I make no guarantees.  If you are unfamiliar with it, the book chronicles the discovery of insulin, along with one of the first patients to get it, Elizabeth Hughes, the daughter of a Supreme Court justice and well-known diplomat.

First off, I am grateful.  We have come a long way.  I am not in an Institute slowly starving to death.  I am not dead.  I am here, and I have a lot of people (and dogs!) who are highlighted in this book to thank for that.  Gratitude is the overwhelming emotion here.  

However.  There are other points made, which I would like to address.

In this book, I was introduced to Dr. Allen, the physician who came up with the brilliant diet to starve diabetics to keep them alive.  It sucked, but it worked.  For awhile.  And for a long long time, he was THE expert on all things diabetic.  It is no accident that a prominent family contacted him to treat their daughter.  It is no accident that they funded his Institute, which accepted patients regardless of ability to pay.  He was the man, and he was convinced that a cure was around the corner, and if he could just keep these people alive long enough to get the treatment.....and he was right. (Well, right to the extent that insulin is a "cure", which it isn't, but it certainly was touted that way at the time.) 

At one point, Elizabeth's mother comes up with a concern we all share.  If there actually was a cure, wouldn't it be in Dr. Allen's best interest not to administer it to his patients?  Wouldn't he lose his practice?  She is reassured by the fact that he has taken the Hippocratic Oath.  He can't knowingly harm his patients.

And insulin comes on the scene, and Banting wins the Nobel Prize, and Dr. Allen loses everything.  EVERYTHING.  He is evicted from his institute.  It is completely razed to pay taxes.  He loses all funding, his practice falls apart, his life is a mess. Nobody remembers him.  He is a cautionary tale for those people looking for a cure.  It might ruin you.

Eli Lilly is the drug company that funds the insulin research.  They push for it.  They basically lobby Dr. Banting. It is one of the first (if not THE first) collaboration between researchers and drug companies.  They figure it out.  Insulin can get mass produced.  It can get to large amounts of patients.  It saves lives.  And in the process, it put Eli Lilly on the map.  And I am grateful.  But I am also skeptical.

According to this book, diabetes care revenues now represent over $3 billion in annual sales for Eli Lilly.  It is their second leading source of revenue.  Eli Lilly also has the reputation of taking over promising Type 1 studies, and killing them, labeling them "ineffective."  

I would write it off as conspiracy madness, but it happened in the study I participated in. Started off being run by Macrogenics.  They were super awesome to deal with. Eli Lilly came in and killed it with the label of ineffective. The office I went to was floored.  Ineffective was the one thing the drug wasn't.  That office had the most participants of any other office running the same study.  They knew what they saw.  And what they saw was a lot of people with dramatically reduced insulin usage, wonderful control, and a significant percentage of patients off insulin altogether, although it is unknown how long they would be able to stay off insulin. At least 2 years, in many cases. They also work with many many different drug companies, seeing as they're a research center, and they don't like working with Eli Lilly.  They take a long time to do reimbursements.  They're slow to answer anything.  They are just basically a pain in the tuckus to deal with.  

I think Eli Lilly remembers Dr. Allen.  They learned the lesson.  A cure would indeed, be disastrous for them.  

Dr. Allen also bemoans the "mass attack" approach taken to cure disease.  "Practically all medical discoveries have been made by individuals or small voluntary groups.  The idea of an organized mass attack therefore lacks basis in past experience."  And he's right.  Jonas Salk.  Banting and Best. Alexander Fleming.  That doesn't mean something good and astonishing can't come out of huge organizations.  The JDRF does amazing work.  But if the cure comes from somewhere else, I will take it.  If Dr. Faustman at Mass General is the one to do it, I'm in.  (I wish I had millions to give her) If it's Dr. Philipson,in Chicago. I'm good.  If it's you, thanks so much.  Please just make sure you raise the billion dollars necessary to get it FDA approved.  Also, can you stick around for 10 years for the process?  Thanks.

I have such a love/hate relationship with drug companies.  I love that they keep me alive.  I hate the way they do it.  I don't mind that they make money.  I do mind that they turn away research that doesn't make them money. I don't think they have a secret cure.  I do think they don't want one.  

This is SUCH a small part of the book.  It's mostly about Banting (a fascinating doctor who doesn't play well with others.  It's hard to see him getting funding today).  And it's about Elizabeth, and the stigma of disease being so strong she tells nobody about it.  It's virtually undiscussed.  There are probably many reasons other than "stigma"  and many of them directly tied to her personality, but it is astonishing how well she and her family hide her condition.

I have another issue, which is just making this post LONGER and LONGER and PLEASE STOP ALREADY.  But it does make it look like once insulin arrived, all you had to go is take a couple of shots, and voila!  Normalcy!  Eat whatever you want!  And compared to what they were living like, it is a lot more normal.  

But my life is not normal. It is almost normal. I remember normal.  Normal is grabbing a handful of cereal if the box is left out.  Normal is munching on chips and salsa without counting the dang things.  Normal is pizza on a busy night with no thoughts of repurcussions.  Normal is not being hooked up to devices.  Normal is sleeping through the night.  Normal is nice.   Normal is a word that sounds weird to me now because I've said it too much.

Still, I am grateful.  Thank you, Banting, Best, and others.  Thank you, Dr. Allen. Thank you, Elizabeth Hughes, and others who were willing to inject an unknown substance.  Thank you, Marjorie the dog.  

Doctor's visits. Yippee..

Endo visit this week.  And so it must be logged.

He laughed and laughed when I told him I got the placebo.  "But you did so well on it!"  I know.  My brain just really really wanted it, I guess.

My numbers haven't been stellar lately, especially at night.  Night time and diabetes don't mix well for me.  Either I'm up all night battling lows, or - and this is far more likely - I am up all night desperately injecting insulin trying to get below 200.  I swear I don't absorb it at night or something.  Unless I do, and then crash.

And I know it's wonky sometimes, but I love that Dex at night.  Even when it misbehaves, I am quick to forgive.  Because it wakes me up when I'm high, and I would have never known.

The download from my meter had the alert "patient's night numbers are significantly different than daytime." or something to that effect.  Yes, I know.  What is UP?

He mentioned pump therapy, so I could increase the basal rate at night, but said "not yet."  I was all set to ask for a pump - so please tell me "why not yet?"  

"Well, there's this new product from Tandem..."

"The T-slim.  Yes.  I know.  That's the pump I want."

"You're way ahead of me."  It's supposed to integrate with the new Dexcom a lot better in the coming months, so he wants to wait until that's done before he puts me on it.  I get it.  Wait for the upgrade before buying the product.  In the meantime, there's also a new basal insulin from Novo coming out that is supposed to be really great.  So there's THAT to wait for...so I'm just waiting.  And hoping my nights get better.  Sigh.

A1C was 6.7.  Not fabulous.  Not terrible.  A .4% increase from 6 months ago.

LDL cholesterol still high.  Switched statins.  I grumbled some more about hating cholesterol meds.  He didn't care.

I had him run a CBC again, just because of the experience at Walgreens.  He called bullsh*t (literally he said that, I don't know why it made me smile so much) on my having low hemoglobin, but ran the test anyway.  It's all fine.  As I suspected.  WBC still a touch low.  I guess that's how I roll.

In the meantime, I am also trying to get my G4 Dex to come before the new year comes and my deductible resets.  It's not looking good, even though the one year mark is Dec.20.  Looks like I'll hit that deductible early next year.  

Is It the Machine? Or Me?

So, in honor of National Diabetes Month, Walgreen's is doing a free A1C in their take care clinics or 24 hour locations.  Hey, you can't beat free.  And who doesn't obsess about their A1C constantly?  (What? You don't?  Good for you.) (Liar.)

So I went in.  He pulled out his little Bayer A1C now box, and ran the test.  Error Code.  Hmmm...look in the directions.  That particular error code means there is not enough hemoglobin to run the test.  Or, that he didn't shake it enough.  Let's do it again.

Prick the finger.  Shake the blood.  Lalalalala.  Wait 5 minutes.  Same error code.

"What's your hemoglobin?"

Um.  Well, I know a lot medically about myself.  Ask me my cholesterol.  Ask me my average blood pressure.  Ask my last a1c, or what my blood sugar was at any given time.  These are things I can answer.  But my current hemoglobin?  Can't pull that off the top of my head, sorry.

So I left without my free A1C.  Not the end of the world.  The guy at Walgreen's calls me a few hours later.  He ran a control on the machine and that worked.  He thinks I should have my hemoglobin checked, said "well, your blood did look a little puny there." OK, then. Huh.

So now I am obsessively googling  low hemoglobin, which the symptoms for are very vague.  Pale skin...well, I'm kind of a vampire anyway....difficulty concentrating....um..not sure?  I pulled out the results of my last CBC.  Last hemoglobin was 13.  So now I can answer that too.

My next appt is in a month.  So I think I can wait.  And a large part of me still thinks it was the machine.  But who knows.  It's not like my body is the best it can be.

It was nice of him to call and tell me he ran the control, though.  Super nice.

No More Texts, JDRF! You're too on the nose!

So, the JDRF is doing this "Be Type 1 For a Day" thing, where they will text you for 24 hours with updates simulating the disease.

I told my friends on Facebook about it.  I also signed up for it, just in case any of them did it, and asked, "was it anything like reality?" I did not want to answer "Uhh....I dunno."

I asked my sister if she signed up.  "Why would I want to do that? That would SUCK.  I have no delusions about how much your disease sucks, and I don't want to live it. "  Ok, then.

It did suck.  And what really sucked about it? It was incredibly accurate.  It told me I was high for no discernible reason.  It wondered if I would shoot up for an apple.  And it woke me up all night with inexplicable lows.  Of course, the fictional run I took right before dinner probably contributed to the fictional lows.

I don't want to do it again.  I already live with this reality.  I don't need texts pretending that I do.

But they nailed it.  It's like they've met a few people with Type 1, or something.