Sunday, 10 April, 2011

Hey D (HAWMC Day 7)

Today’s prompt: Leave your health a text or a voicemail.
Hey D, it’s Jess.  As you may know, I’m real people sick.  Started with a sore throat, and now it’s moving into my head.  And ya, know, I really have enough to deal with without your help.  I can barely stop sneezing long enough to check my bgs.  I don’t appreciate the high numbers.  So if you’d just leave me alone for a few days, that’d be great.
Thanks.  Bye.

Help A D-Rockstar Out! (HAWMC Day 30)

Today’s Prompt: Gobbledygook Day. In health communities there is a certain lexicon that only those on “the inside” can understand. So today, for our last prompt, make up a new word to use. 

D-rockstar: a person who is a total rock star in the D world.  May also be used as a hashtag (#drockstar).
You know who is a total D-rockstar?  Victoria Cumbow. 
Victoria lives in Alabama.  And unless you’ve been hiding under a rock, I’m sure you’ve heard of the devastation that occurred there this week.  
A LOT of help is needed!!! Go check out Victoria’s blog to see how you can help.
In addition to monetary donations, many diabetics have lost all their supplies in the storms.  If you have extra supplies laying around or can go buy some, they are desperately needed!!!!  Non- prescription supplies including, but not limited to:
  • meters
  • test strips
  • lancets
  • glucose tabs
  • ketone strips
  • syringes
  • insulin
  • anything else you can think of

If you have supplies to send, please email me or contact Victoria.

This is why Victoria is a D-rockstar.  My grandparent’s hometown was nearly wiped off the map by a tornado almost 10 years ago, and that was traumatic enough.  I can’t even imagine how Victoria and all the others affected by the storms must be feeling.  She has been working tirelessly to help people in her community.  The least we can do is send some supplies her way!
So let’s help a D-rock star out!!!
Follow Victoria on Twitter to stay updated.

From Victoria’s post:

“If you have money, donate to the Red Cross by texting “Red Cross” to 90999 to have $10 added to your phone bill.

To send money to Huntsville’s local office, mail to American Red Cross, 1101 Washington Street, 35801. Designation: Tornado relief.

You can send national donations to theAmerican Red Cross, P.O. Box 37243, Washington D.C. 20013. Designation: Tornado relief.”

Note: I did not invent the term D-rockstar.  I wanted a term that I could use to blog about what Victoria is doing.  There is a site out there called Diabetic Rockstar.  I am not a member of that site, nor did they ask me to use the term.  I just found it fitting!

*Thanks for sticking with me through all the HAWMC posts this month!  I’ll be back after a little blogging break, for the sake of my sanity.  While I’m gone, send some stuff to Victoria.  Love you all!*

Never-Ending (HAWMC Day 8)

Today’s prompt: write a poem where every line is a question.
Why do the questions never seem to end?
Not only those others ask, but I ask myself?
Why is my blood sugar high
when I’ve eaten this same thing before?
Did I not bolus early enough?
Is my insulin to carb ratio off?
Were there more carbs than I thought?
Should I have done a combo bolus?
Should I do some basal testing?
Are there bubbles in my tubing?
Am I getting sick?
Is it that time of the month?
Will the questions ever end?

Admiration (HAWMC Day 21)

Today’s Prompt:  Who is someone you really admire?
Well, I really don’t know what to write that wouldn’t be repeating myself.  I’ve already written multiple posts about several people I admire.  Here’s a recap, in no particular order.
I’ve blogged about my amazing parents multiple times.  My mom and dad are both heroes to me, and I don’t know what I’d do without them.
Another person I admire so very much is my grandpa.  And Poppa is doing very well now.  Thanks to everyone who helped me through that difficult time.
My wonderful husband is someone else who continually amazes me.  Not only is he incredibly supportive in all areas of my life, but he’s wicked smart too.  I could brag on him all day.
And finally, there’s my friend Barb.  She is going through a lot right now.  But her positivity and contagious energy is truly inspiring.  Seriously, go check out her blog.  I guarantee you’ll be inspired too.

Usually (HAWMC Day 11)

Today’s Prompt: Wikipedia. Pretend you’re rewriting or adding onto your condition’s page – what sentence or paragraph should be included (in your opinion) on your the page.

Ok, first of all, I must say that I am quite impressed with what’s there when you search for diabetes.  It has seperate sections on Type 1 and Type 2.  Woohoo!  And it even mentions LADA (although that section could stand to be expanded upon).

This line is both exciting and frustrating: “Both type 1 and 2 are chronic conditions that usually cannot be cured.”

Yay for someone entering that BOTH types usually cannot be cured!  Woot!

Now the word “usually” needs to be removed, and we’ll be good to go.

Both type 1 and type 2 are chronic conditions that cannot be cured.

Haiku (HAWMC Day 5)

Today’s prompt: write a health haiku.

Up early today

Time for site and sensor change
Off to work I go
*for info on Blunt Lancet see here, here, here, and here.

Fun With A Red Pen (HAWMC Day 25)

Today’s Prompt: start by finding an old post of yours from months (or years) ago. Revise it as radically as you can. 

This was the third blog entry I wrote, and my first brutally honest one.  I picked this post to edit because they long and not entirely relevant intro has been bugging me ever since I posted it.  I like the post overall, but it felt good to slash that part!  Whew!  Oh, and you can read the original post here.

Digging My Way Out

Buckle up, kids, this could be a long one.

Ok, so you should probably know that I’m a bibliophile and overall english nerd.  If I’d had time, I would have loved to add an English major in college (as if I didn’t do enough writing with my psychology and theology majors).  I worked in the writing lab, and am a total word nerd.  I get it from my dad–the human dictionary.  Back in college, I used to call him when writing a paper and say, “Dad, I’m thinking of another word for ________,” and he would rattle off a list of synonyms.  I even called him on behalf of a few of my roommates.

I also seem to be developing this (sometimes annoying) habit.  I love words, so I’m going to bore you with some definitions now (thanks  Apathy means absence or suppression of passion, emotion, or excitement; also freedom from emotion of any kind.

Burnout (also means fatigue, frustration, or apathy resulting from prolonged stress, overwork, or intense activity.

Huh, wow, I didn’t even realize apathy was in the definition of burnout.  Guess that means I’m on the right track.

So, now you know what I’m talking about.  Apathy and burnout.  Welcome to my life for the last few years.  I know I’m not alone in this.  A number of people have blogged about their burnout (Kelly did and also posted some burnout links here).  And Kerri mentioned apathy in her post.

I am well acquainted with these terms.  As my bio says, I was diagnosed with D at age 10, less than 2 weeks before the start of 4th grade.  I’ll spare you my life story (for now), but all in all, I don’t even remember life before D.

My D care has been ok over the years.  We all know how hard it is to balance the bgs of a kiddo, but thanks to a lot of work on my mom’s part, mine weren’t too bad.  And college brings a host of it’s own challenges.  Still, my A1Cs have remained consistently in the 7s.  At my last endo appointment, it was 8.0, the highest it’s been in my adult life.  Which amazes me.  It really does.  When my endo read the number, I breathed a huge sigh of relief.  I had been expecting much worse.

I’m not sure when the burnout started, but it was sometime after I got married.  Not that this has anything to do with my wonderful husband–far from it.  I love him more than anything in the world!  He’s always so supportive and encouraging, and strives to understand as much as any Type 3 (non-D loved ones) can.

So who knows why?  But I had it–both apathy and burnout–hardcore.  I still went through all the motions like a good little D patient.  Still checked my sugars at least 4 times a day.  Bolused for my food, changed my sets out when I should have, went to the endo.

But I didn’t care.  Not about any of it.  Not that my A1C was slowly rising.  Not that I was constantly running in the 200-300s.  Not that I only counted carbs when I ate something out of a box with a nutrition label.  Everything else was SWAGing.

I should have been upset.  Looking back, I’m horrified that I did that to myself.  Also not helping my sugars was my emotional eating.  That’s something I’ve struggled with for a long time.  Stuffing my face with empty carbs and calories, SWAG bolusing, and not even knowing why.

Not that I cared why.  Looking at my wedding pictures made me sick.  Good grief, was I ever that thin?  All my emotional eating led to me gaining a good bit of weight, and go through A LOT of insulin.  And then the guilt sets in.  You need to lose weight.  Don’t eat that.  You need to get your bs under control.

But I just couldn’t.  It was easier to stuff my face and not care what the number on the meter said.  It was easier than dealing with it.

But dealing with what?  I didn’t know.  I love my husband.  I live close to my family, who are all nothing but supportive.  I have wonderful friends (even if most of them live out of state).  And I love my job, not that it doesn’t stress me out sometimes.  So what was wrong?

Now, I can see it.  All the emotional eating and D apathy were symptoms of a severe case of D burnout. Serious, hardcore, deep burnout.

Fast forward to November 2010.  I was at the end of my rope.  My endo appointment was coming up.  I’d already cancelled it twice because I was afraid of what my A1C would be.  I knew I needed to go, but I was terrified.  What would the number be?  What would my endo say?

On a whim, I decided to join Juvenation, an online community for t1s and their families.  Juvenation has been my saving grace.  I didn’t even realize how alone I felt until I started poking around the site and reading some of the threads, posts, and blogs.  I had an epiphany.

I.  Am.  Not.  Alone.  I AM NOT ALONE!!! I found support.  I found a name for what I was struggling with–burnout.  Naming my struggle gave me power over it.  I knew I was going to be ok when I read this post by my now-friend C (thanks for that one, by the way).

Through Juvenation, I was introduced to the DOC (Diabetic Online Community).  I started reading every d-blog I could find.  I got a Twitter account.  I am engaged and involved in my life again–the apathy is gone.

This is the part where I thank all my fellow DOCers.  Without all of you, I know I would still be entrenched in that burnout.  You are helping me dig my way out, one day at a time.  I owe you all so much.  More than words can say.

That’s why I started this blog.  If the hell I have been through can help just one person, then it all will have been worth it.  I know it sounds cheesy and corny, but it’s true.  I know how you feel.  I have been there.  And thanks to my family, friends, new CGM, and the DOC, I am digging my way out.

Epic Fail (HAWMC Day 9)

Today’s prompt: Health Activist Choice. Today’s blog post can be about anything you like. Free write! 

Well, I’m happy the HAWMC prompt today is a free-write!  It saves me from writing two posts in one day!

Here’s the latest on the Reader’s Digest drama.  None of us who emailed have heard back, except for Kelly, who has been calling and harassing them.  She finally got a response from Karen Reynolds, which is sorely disappointing!  You can read all about it here.  Warning: it will likely make your blood boil!

So I shot off another email to RD, including Karen Reynolds.  Here it is:

To Whom It May Concern-

I am quite livid right now.  I have seen the comment your publication put on my friend Kelly Kunik’s blog, and it is infuriating! I have also read her additional post about her correspondence with you, Karen, and I have to agree with Kelly.
I understand you are trying to help people, really I do.  I also realize that you are not the only ones who use the “reversing diabetes” terminology.  But your rhetoric is dangerous.  Any publication or person who talks about how diabetes can be reversed or cured is recklessly spreading misinformation.  THIS IS NOT OK! 
I stick by what I said in my previous email (which I never received an answer to).  I personally know people with Type 2.  They have changed their eating habits.  They exercise.  They’ve lost weight.  And yet, they still have Type 2.  They still have insulin resistance and cannot get off of their meds.  How do you think that magazine will make them feel?
I second Kelly’s concerns about this kind of rhetoric affecting research.  Both Type 1 and Type 2 need a cure!!!!  Karen, I realize you don’t think this is a valid concern, but I do.  People are not going to want to fund research for any kind of diabetes if they think it can be reversed.  For example, Arizona is thinking charging people with diabetes an additional fee for their Medicaid!  Seriously!
How can you sit there and claim that language like this has no impact?
I DO expect to hear back from someone this time!

Ok, people.  Below is Karen’s contact info (also listed on Kelly’s post).  Please email and call her!  Make your voice heard!

Karen Reynolds
Publicity Curator
Reader’s Digest Media
750 Third Avenue, 4th fl.
New York, N.Y. 10017
[email protected]

Dear Reader’s Digest

This post is not part of the HAWMC posts.  But I was too steamed not to write it.  The following is an email I just sent, word for word, to Reader’s Digest.  Why, you ask? 

Dear Editor-

Hi, mine name is Jess. I’ve had Type 1 diabetes since 1993.  Today, I was made aware that there will soon be a special issue of RD called Reverse Diabetes.
I find this extremely offensive and insulting.
First of all, you are not differentiating between the different types of diabetes.  There are 3 types: Type 1, Type 2, and LADA.  Your magazine does not mention which type of diabetes the special edition is speaking of.
THERE IS NO CURE FOR DIABETES OF ANY KIND!!!!  It is completely irresponsible to suggest otherwise.  
I have Type 1 Diabetes because my body no longer produces insulin.  There is no “reversing” this.  I will have this disease for the rest of my life.  Or until I cure is found, which I can only hope I see in my lifetime.
I have friends with Type 2 diabetes.  I’m sure that they would love to “reverse” it.  Unfortunately, THIS IS COMPLETE AND UTTER CRAP!  People with Type 2 can improve their insulin resistance, but they too will have diabetes for the rest of their lives, until a cure is found.
I am extremely disappointed and offended at this lack of attention and fact-checking.  By publishing this edition, you are spreading misinformation.
Don’t get me wrong, I am all for helping people to make better decisions about their health.  I believe it is important for all people, including those with diabetes, to take the necessary steps to take better care of themselves.  
But really.  I do hope you will seriously consider the impact this special edition will have.  There is so much misinformation out there about diabetes, and you will be contributing to it. I encourage you, and plead, that you take another look at the magazine.  You will lose many fans in the diabetes community by going forward with this.  Attached is the link to my blog and the post I wrote yesterday about a similar issue with CNN.
Thank you for your time, and I look forward to hearing from you.

Please let Reader’s Digest know how we feel!  Email [email protected], or send mail to React, Reader’s Digest, PO Box 6100, Harlan, Iowa  51593-1600 “Include your full name, address, email, and daytime phone number.”

Thanks to Kim for bringing this to my attention! 

Cure (HAWMC Day 16)

Today’s Prompt: You wake up, it’s some day in the future, and your condition or (any health-related issue) has been cured. You heard right: cured. And you’ve been chosen to cover this breaking news. It’s your big break: write the Press Release, interview the cure-founder, or visit the discovery site where patients everywhere are flocking to get in line. 
This prompt is quite creative, but I’m not sure I can do it.  I must admit that I’m having trouble with this prompt.  When I hear the word “cure,” there’s a lot of emotional baggage that pops up.  Those of us who’ve had D for a long time have been promised a cure for just as long.
And as much as I want a cure, I can’t bring myself to make light of it.  I want it so badly some days it hurts.  Most of the time, I’m ok with the fact that eating is complicated for me.  Sometimes though, it hits me hard.
Like last night, as we were watching TV, my husband sat there eating a giant bowl of ice cream.  Could I go have some?  Sure.  But full-sugar, full-fat ice cream is not good for the bgs, no matter how precisely I measure.
I don’t remember what that feels like anymore.  To be able to sit and eat whatever I want, and not worry about what it might do to my blood sugars.  Today, that is hitting me especially hard.  I don’t know why. Poor J.  He was sitting there, eating his ice cream, and his wife bursts into tears.  And he was wonderful and supportive as always.
I do want a cure.  Desperately.  But I try not to think about it too much, because honestly, I get upset when I do.
Now, the Artificial Pancreas Project?  I can talk about that all day.  To me, that seems much more realistic.  Something tangible that I can see happening in my lifetime.
So, sorry everyone, there will be no witty press release from me today.
If I do see a cure in my lifetime?  Then there had better be D-prom, with glitter and the DOC mascot, Sprinkles the unicorn.  Blunt Lancet will play, and there will be cupcakes galore.  And I will dance the night away with my DOC friends.
Until then, I try to hold onto hope…

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