My Cure, Your Cure . . . .

If there is one thing I know for sure about diabetes, it’s that it isn’t one size fits all.  Some people do great on pumps, others flourish with MDIs.  Foods that spike me may not necessarily spike you.  I do best on Apridra, one of my friends does best on Humalog and another friend needs to use Novolog.  The list goes on, but it’s best summed up with the words of my wise friend Bennet, “Your Diabetes May Vary”.

Lately my Facebook feed has been filled with excitement over the progress being made toward encapsulating islet cells.  There were a flood of links to this article in particular and to other similar pieces.  Thrilling stuff, for sure, and I’m excited to see progress toward new treatment options.  But one word halts me every time I see the article.  And that word is “cure”.

Image Source

Encapsulation, for me, is not a cure.  My definition of a cure would be my body producing its own insulin again.  Encapsulated cells in my body producing insulin will hopefully be a fantastic step forward in treatment, but I would still think of myself as a person with diabetes.  It’s my understanding the device would need to be replaced periodically.  Therefore, I’d still need to undergo procedures and that isn't a cure in my mind.  And what if I had an allergy to the device, or for some other reason it needed to be removed?  I’d still have diabetes and I’d be right back where I am today.

Some people with diabetes may consider encapsulation devices to be a cure.  And that is their right.  But I wish the media wouldn’t toss that word around so frequently.  Because just like diabetes, Your Cure May Vary.

The Diaversary that Wasn’t . . . .

My diaversary (or the anniversary of my diabetes diagnosis) falls some time in December.  My hospital records are long gone and we’ve forgotten exactly which day I was rushed in and diagnosed, so I usually pick the middle of the month, December 15th, to mark the occasion.

This year makes 36 years I’ve lived with diabetes.  Pete and I usually celebrate.  We aren’t celebrating the fact that I have diabetes.  After all, although I firmly believe “life with diabetes isn’t all bad”, I most certainly would rather not have to live with this (or any) chronic illness.  But we still celebrate, to acknowledge how far I’ve come, how far treatments have come, how much work we put into keeping me healthy, and that I’m still here and (mostly) kicking diabetes’ butt.

So I had last Tuesday all planned out.  First I’d blog about my diaversary, which I do every year.  Then I’d head out of finish my Christmas shopping and stop at Crumbs for celebratory cupcakes.  And that evening, Pete wanted to take me out for a nice dinner.

None of that happened.  I woke up Tuesday feeling depressed by the weight of 36 years.  I was thankful to still be alive and healthy, but I hated everything about living with diabetes.  I didn’t have it in me to celebrate.  I didn’t even have it in me to leave the house.  I vented to a group of trusted friends in a private Facebook group (which helped a lot, so thank you!!).  And then I climbed back into bed to watch T.V. and snuggle K.C. (who was an overjoyed kitten loving the extra attention).

It kind of seems stupid and whiney now.  I don’t quite know what my problem was.  But on the other hand, diabetes can be so demanding and if I needed  a day to wallow I guess that’s okay.  By Friday I was ready to buy those cupcakes, but alas our Crumbs is closed again, apparently for good this time.  Oh well.  Pete wanted to reschedule our fancy dinner for a day that I’m feeling up for it, so we have plans to go tomorrow.  And who knows, maybe tomorrow is actually the day of my 36th diaversary.  But whether it is or isn’t, I want the dinner to be about Pete and I spending a nice evening together and not about 36 years of this chronic illness. 

This year, I guess I’m just not into my diaversary.   I just need the diaversary that wasn’t . . . . .

10 Insane (but True) Things About Diabetes . . .

I’ll admit that my blogging mojo seems to be on Summer Vacation.  Try as I might, I can’t come up with anything to write about.  So in a moment of desperation (because OMG if I don’t blog about diabetes they might take it away from me)  (also, wouldn’t that be GREAT???) . . . anyway, in a moment of desperation I turned to Blog Topic Generators.  I didn’t really have high hopes that this would solve my problem but I typed in the word “diabetes” and hit the button.  To my surprise, a few fun ideas popped up!

“10 Insane (but True) Things” caught my eye right away.  Because really, diabetes is pretty insane, right?   So here are my 10.  Maybe you’ll find yourself nodding along.  Or maybe you’d like to add a few that I missed.  Or maybe you randomly stumbled across my blog, in which case I hope I’ve helped you learn some insane (but true) diabetes facts.

1. The very medication that saves my life can very easily kill me.  -  What kind of sick joke is this, right?  Without a steady stream of insulin, I will die.  But dosing a bit too much insulin can also be lethal.
2. Strangers (and  even people I know) seem to think it’s perfectly fine to tell me “diabetes horror stories”. - I really don’t understand what makes it okay to tell me about relatives with limbs chopped off or blindness or failed kidneys.  Sometimes I wonder if people do this for other illnesses too?  “Oh, colon cancer.  My grandmother had that and they removed part of her large intestine and she had to have a colostomy bag!”.  Please tell me people don’t say things like that - and please make them stop doing it about diabetes.
3. When things go wrong, I get blamed. - The blame.  Oh the blame!!!  It sucks.  Blood sugars out of range?  Diabetes complications?  Must be because you aren’t taking care of yourself.  Again I have to ask if people do this with other illnesses?  “My uncle had skin cancer on his nose and they operated and it destroyed his salivary glands and for the rest of his life he couldn’t eat and was fed protein shakes through a feeding tube.  But, you know, he was a landscaper so he was in the sun all day long, so he really brought it on himself.”  Nobody would ever say that about skin cancer, right?  (Oh I sincerely hope not!!)  But it’s okay to tell a horror story with a side of blame about diabetes?  Come on, can we PLEASE stop doing this??
4. Even though diabetes is an incurable chronic illness, people will tell me how to cure it. - Let’s hear it for the wonder cures!!  Cinnamon, okra, magic herbs, dancing naked under a full moon.  Once, while buying a JDRF sneaker at a pharmacy, the cashier proceeded to tell me that there is a cure for Type 1 in Europe and why I didn’t just go there?  I shutter to think what a statement like that does to the fundraising efforts . . . .  donate to Sneakers for the Cure?  No, just go to Europe!!
5. I can be fine, and five minutes later I can be totally incoherent.  - Sometimes it’s scary how fast and severe a low can come on.  Toss in my hypoglycemic unawareness and the chance that I’ll randomly lose my ability to function at any point in the day increases.  Especially if I’m shopping at Target, am I right?
6. The results often do not equal the effort. - I can do the exact same thing at the exact same time two days in a row, and go way high one day and way low the next.  Or I can have a day when I try really hard and still have crap blood sugars.  And I can totally half-ass diabetes management one day but find myself solidly in range.  Makes no sense!  It can also make motivation really hard to find sometimes.
7. There is no finish line in diabetes and I can’t EVER have a day off.  - Yes, I know, this is what puts the “chronic” in “chronic illness”.  But think about it.  Since 1979, I’ve dealt with a condition that needs almost constant attention and is affected by a million different factors.  SINCE 1979!!!!  Not a single day off.  I did it yesterday.  I’ll do it today.  I’ll be doing it again tomorrow, and next week, and next year.  Frankly, if I think about this too much, it’s exhausting.
8. Diabetes is hard on my body.  -  I have callouses on my fingertips from repeatedly lancing them to draw blood to check my glucose.  Every three days I jab the needle of an infusion set into my skin.  Every six days I do the same with my continuous glucose monitor.  For my first 28 years with diabetes, syringes were stabbed into me at least once a day and often almost a dozen times daily.  Bruises and scar tissue and red marks abound.  Medical devices must hang from even the most chic of outfits.  And let's not forget the toll diabetes takes on me internally, to my eyes and my heart and my nerves and every part of me.
9. Diabetes is even harder on my mind. - The blame from Item 3?  It doesn’t just come from the outside world.  It also come from me.  When things go wrong I’m the first to blame myself.  Now let’s mix in some fear from Items 1 and 5.  Toss in some distorted body image from Item 8.  And let’s not forget some WTFedness from Items 6 and 7.  Mix it all together and it brings me to Item 10 . . . . which is . . . .
10. Diabetes is just insanely hard.

A Very Long Time . . . .

Nope, this post isn’t about how long my new computer was broken.  (Almost two months, until we finally got Dell to send a tech to our home and he replaced the faulty motherboard and had it up and running in about an hour.  But who’s counting.)  It also isn’t about how long it’s been since my last post.  (Which is, of course, due to being without my laptop.)  This post is about a small but weird thing that happened during my fourth and most recent trip to JDRF Government Day a couple of weeks ago.

Every year, each advocacy volunteer stands up and gives a short introduction.  It takes quite a while because there are hundreds of us in attendance, but I really love it because it helps us connect with each other and it’s inspiring to hear everyone’s stories.

When my turn came around, I stood up and spoke into the microphone.  “I’m Karen Graffeo and I’m the Advocacy Team Chair for the Greater New Haven, Connecticut chapter.  I was diagnosed with Type 1 in . . . . . “  And suddenly, for a brief second, I felt completely thrown.  It seemed like such a very long time since I was diagnosed and I felt the weight of the years crashing over me.  I had to take a slight breath before I could continue with “1979.”.  It all happened in an instant and I’m sure nobody even noticed.  But it really caught me off guard.

1979.  For the most part, that doesn’t bother me.  It is what it is, and I’ve met many people (and there were many in the room that night) with diagnosis dates much earlier than mine.  I’m not sure why it bothered me for that odd moment.  Maybe because, if I really let myself stop and think about it, 1979 certainly is a very long time.



Another new experience this year, I discovered The Summerhouse on a solo trek back from Capital Hill.  It’s very cool and I can’t believe I’ve overlooked it in past years!

35 years . . . .

One day this month is my 35th diaversary.  We don’t know my exact diagnosis date, so I always just pick a day somewhere during the middle of December to observe the demise of my pancreas.  Today seems as good a day as any.

I find myself with conflicted feelings about living 35 years with diabetes.  It seems like such a huge chunk of time.  And as I like to say, life with diabetes hasn’t been all bad.  I’ve met some of my best friends because of diabetes.  Real-world friends.  On-line friends.  And, perhaps the most dear to me, on-line friends who have become real-world friends . . . . or actually more like family.  And even my “twin”.  I’ve had some great experiences and opportunities that probably wouldn’t ever have come about if not for diabetes.  For all of that, I’m thankful.

But honestly, at this moment I feel the good is no match for the bad.  There are things about diabetes that make me so angry.  And I’m going to vent them here, today, because I’ve decided after 35 years I have that right.  Here goes . . .

Diabetes, I hate that on Sunday morning I was sleeping soundly and in the middle of a dream when I awoke to Pete putting his hand on my back.  He explained that I wasn’t moving and he couldn’t see me breathing, so “I got scared and had to make sure you still felt warm.”.  That moment showed Dead in Bead is a real fear for my husband, and I despise that.

Diabetes, I hate that 11 year old me had to watch other kids eat cake that I was denied at birthday parties in the days of exchange diets and crappy insulin.   I hate that I still carry scars from that.

Diabetes, I hate that every time someone judges my diabetes management, a small piece of my confidence is chipped away.  And I hate that every time someone judges someone else’s diabetes management, a small piece of my heart breaks.

Diabetes, I hate that no matter how badly I need to take a break from you, that isn’t possible.  Pete and I have talked about giving me a Diabetes Day Off, but I think he’s so afraid of hurting me he just can’t do it.  We joke about wanting to bribe hire a D-Mom to come take over for a day.  Truthfully, it isn’t really a joke because I would absolutely love to be able to do that.

Diabetes, I hate that as a teen I would lay awake at night counting how many healthy years I thought I had left.  I didn’t think I had many, maybe 5 or 10.  I was sure I’d be long dead by now.  I really thought there was no use trying to take care of myself, because complications and early death were guaranteed.  Yes, I’m happy I was wrong about that, but I hate that I felt I had no future.

Diabetes, I hate that you make my loved ones worry about me.  I also hate that their worry probably runs far deeper than I can even imagine.

Diabetes, I hate the fear you bring to every eye exam and lab test.  I hate feeling like I’m always waiting for the other shoe to drop.

In 35 years I’ve built up a lot of diabetes hatred.  But, of course, I know diabetes is here and it isn’t going anywhere.  So in the end, after I’ve let myself have this good venting session, I’m picking myself up and just continuing on . . . . . .

Guest Post: Denouncing the Charlatans . . .

Today I'm delighted to share another guest post from Rick Phillips, who was kind enough to write about Spring Rains here last month.  Take it away, Rick!

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First, thank you to Karen for giving me another chance to do a guest blog. I was once told any time a lady says you can come visit again you have done alright. As a matter of fact thinking back on my 57 years that only happened once and I married her (though she did turn me down for a first date 3 times before she called and asked me). Ha go figure.

Today I stumbled on another supposed ‘cure’ for diabetes. This one a 28 day cure. These things always make me think of the awful situation my mother faced years ago right after her diagnosis with type 1 diabetes in 1962. In those days mom and dad were alone and struggling with how to go forward. Now mom knew about diabetes, her sister (my aunt) was diagnosed at age 7 and she lived 3 years (she did not die of diabetic complications), but still as a thoughtful person mom felt alone with big decisions to make.

My mother’s (Marjorie Hale Phillips) senior picture before her 1954 HS graduation, she was 17 and Valedictorian of her class when this picture was taken. (Mom skipped 3rd grade)

Of course we now live in a world of social media, something my mom never had, but she would have used if it were available. I think mom would have found virtual supporters and helpers, just as easily as she found supporters in her in regular day to day activities (there were many). The difference being that today, mom would have found both more knowledge and well to be generous more stupidity about diabetes.

Some folks think these miracle diabetic cures are the invention of the internet age. I know better. When my mother was first diagnosed in 1962 she was confronted with a choice. When diagnosed she saw a doctor who gave her a very precise diet, including a multitude of herbs and vitamins. She was told to stop insulin immediately and pick up this diet and in time (perhaps 6 months) her Type 1 diabetes would be ‘cured’. She rejected that idea in favor of insulin.

What I admire so much about my mom was that she always looked forward, never back. Once (15 years later) I asked mom about that diet. She said it was so tempting to stop insulin and do that rigid, unattainable diet. I asked her why she didn’t stop insulin. She said it didn’t make sense; the science just did not support it. Today of course mom would search the internet for this crazy diet, she would find supporters and detractors of that approach and a dozen more. I think she would come to the same conclusion however. I think she would still choose insulin over lunacy.

A site like Karen’s is a beacon for giving good information and we need to celebrate that. But we also need to be just as loud in denouncing the charlatans. Yes I want a special diet to cure my diabetes. I want Okra water to cure it; I want cinnamon to cure it. But the science just does not support it. As for me I will choose insulin and that is the best advice I can give a type 1 diabetic today. Well that is until we get a Cinnabon (eat 2 Cinnabons with extra icing a day) cure. When I get that specific diet cure I may follow along. (no don’t worry, not really)

*** Lawrence ‘rick’ Phillips Ed.D.  is a 40 year type 1 diabetic who blogs about diabetes, life and films at TUDiabetes.org.  You can also find him on twitter @LawrPhil.  He is a notorious misspeller of words, and sometimes he tells humorous stories.  He has been married for 37 years Sheryl and has two sons and three grandchildren which he will tell you about ad nauseam if you let him.  You can contact him at rphil2@yahoo.com. ***

No Days Off . . . . .

I think for me, the hardest thing about diabetes is that there are no days off.  Even if you’re trying to celebrate, say, a birthday weekend.  A weekend that, for several reasons, ends up being particularly crappy can be made even more crappy by diabetes.

I woke up on Sunday another year older and with a high blood sugar that just wouldn’t quit.  If ever there would be a day I’d wish for diabetes to give me a break, it would be on my birthday.  Instead I played “why the eff can’t I get back into range” and wasn’t able to eat a thing until well after 4:00 pm.

In the end, diabetes just likes to remind me that it doesn’t care what is going on or that I'm trying to have a special day.  In the end, it sometimes just wants to remind me that I have to work a little harder.  In the end, it just wants to make it clear that it isn’t giving me a day off.  Happy Birthday?  Well, maybe next year . . . .

Accomplishments - #DBlogWeek Day 4

You can find more Accomplishments Big and Small posts on the Thursday 5/16 Link List.

We don’t always realize it, but each one of us had come a long way since diabetes first came into our life. It doesn’t matter if it’s been 5 weeks, 5 years or 50 years, you’ve done something outstanding diabetes-wise. So today let’s share the greatest accomplishment you've made in terms of dealing with your (or your loved one’s) diabetes. No accomplishment is too big or too small - think about self-acceptance, something you’ve mastered (pump / exercise / diet / etc.), making a tough care decision (finding a new endo or support group / choosing to use or not use a technology / etc.). (Thanks to Hillary of Rainie and Me for this topic suggestion.)


I used to be a pre-teen girl who had to check her urine.
I am now an (almost) 45 year old woman who checks her blood.

I used to be tied to a strict exchange diet which forced me to eat certain things at certain times and forbid sugar.
I am now able to count carbs and make food choices and bolus to cover what I’m eating when I want to eat it.

I used to be required to take 5 or more injections a day to get the insulin I needed.
I am now hooked up to my pump and insulin is continuously dripping into my body.

I used to be surprised to find a very high or very low number on my meter.
I am now usually given a heads up by my trusty Continuous Glucose Monitor.

I used to be embarrassed and ashamed for people to know I had diabetes.
I am now proud to educate and advocate and let people know what life with diabetes is like.

I use to be a brand new diabetes blogger who hoped to fit into a community of people like me.
I am  now thrilled and excited to be sharing Diabetes Blog Week with over 200 other bloggers around the world.

I used to be alone with diabetes.
I am now a grateful and happy member of the Diabetes Online Community!

But I still hope to some day say . . . . .
I used to be a person with diabetes.

Long Overdue . . . . .

So I’ve been putting off writing about Government Day because it’s really hard to write event recap posts, isn’t it?  Or am I the only one who feels totally overwhelmed and unequipped to put all of the experiences and inspirations into words.  It’s almost like trying to explain what a low blood sugar feels like - I can rattle off the symptoms but you won’t really get it unless you’ve had a low too.  But going to Government Day is a million times better than having a bad low, so I really want to try to bring some of the experience to you.

When I look back on my four days in D.C., three major components stand out.  The people I was with, the information that was shared, and the time spent advocating to our government representatives.  I’m going to start with the whole reason more than 160 volunteers traveled to D.C. - advocating on Capitol Hill.

I never would’ve imagined I’d right there in front of the U.S. Capital building.

When we storm “the Hill” on our last day and a half in D.C., we are well prepared with a clear mission. Last year it was to urge our officials to support the renewal of the Special Diabetes Program. The SDP has two components and each piece provides $150 million towards diabetes research. It was renewed as we rang in the New Year as part of the Fiscal Cliff package, so our mission this year was to thank our representatives for the renewal. However, it was only renewed for one year, so we also let them know we’d be contacting them later in the year to ask for support again.  It’s important to lock in a renewal as soon as possible, because the funding ensures that the research being done now on things such as the Artificial Pancreas will continue.  After all, if I was a researcher working on a project whose funding was about to run out, you’d better believe I’d look for a new project to work on that had funds locked in.  There are so many exciting treatments and technologies being developed for Type 1 Diabetes right now and it’s important to ensure they will continue.  (More on that when I write about the information presented at Government Day!)

There is an amazing feeling that comes from being up on Capital Hill working for something you are passionate about.  I walk the halls of the Senate and House offices knowing that many aren’t lucky enough to get the chance to experience what I’m experiencing.  Honestly, I’m complete crap when it comes to fundraising - always have been and probably always will be.  But when I’m advocating on the Hill, I’m helping to raise $300 million for diabetes treatments and technologies.  Not too shabby!  I team up with the advocates from the other Connecticut JDRF chapters and we educate our officials about the research going on and about what living with diabetes (or being the parent of a child with diabetes) is like.  I often can give them a first hand example, as all that walking around Capital Hill usually has my low alarm blaring as I chomp glucose tabs in the Congressional offices!

Participating in Government Day also reminds me of how lucky I am that the members of Congress from Connecticut are all very supportive of diabetes issues and funding.  It’s eye opening to see that not all states can say the same.  Hearing stories from other advocates about tough meetings on the Hill makes me appreciate the reps I meet with all the more.  It also  makes me appreciate my fellow JDRF Advocacy volunteers who don’t give up even when their representatives aren’t receptive to our cause.  It helps me remember just how much each and every constituent's voice counts and how important it is to let the government know how crucial diabetes funding is.  It’s why I’m proud to volunteer as a JDRF advocate and why I hope everyone who reads this post will sign up too.

Farewell, Old Friend . . .

In 1994 I bought my first brand new car, a black Honda Civic.  It carried me all over New England.  It shuttled me back and forth to New Jersey nearly a hundred times over the three years that Pete was living there and we were doing the Long-Distance-Relationship thing.  It’s not bright and shiny anymore, but it has always started up faithfully.


When we bought our new Civic two years ago, we decided to trade in Pete’s car and be a two Civic family.  But when he started his new job in April and began commuting by car instead of train, we bought him a new car.  We transferred the insurance and registration from my old Civic to his new CRV.  And we made the decision to donate my Civic to JDRF.  This afternoon a tow truck will be here to take it away.

Farewell, old friend.  You were a great car and I have many fond and sentimental memories of you.  As hard as it is for me, I know it’s time to say good-bye.  And it warms my heart to know that by donating you, you may someday help bring a cure for diabetes.

I don’t know anything . . . .

I’ve lived with diabetes longer than I’ve done almost anything else in my life.  Longer than I’ve known my husband.  For more years than I was in school.  Longer than I’ve owned my own house, been able to drink alcohol, or had my driver license.  I’ve lived with diabetes for 32 years and 8 months, so by now I should know absolutely everything, shouldn’t I?  I should be able to run on auto-pilot with perfect results, right?  WRONG!!!

Lately I’ve been feeling like I don’t know anything about diabetes.  Well, no, I guess I’ve been feeling more like diabetes has changed the rules.  Specifically, the low blood sugar rules.  I’ve always felt lucky that my body handles lows really well.  Even in the 30s and high 20s, I’ve been able to do what I needed to do without much of a problem.  Lately, that hasn’t been the case.  I had that scary bad low last month when I was home alone.  Thinking back, I also had a weird low in the middle of the night while at Friends for Life.  I tested somewhere in the 30s and ate four GlucoLift tablets, and then sat there trying to figure out if that was enough.  I was so confused that I had no idea how  many carbs I needed to treat a low.  I picked up the box of Canadian Smarties that Scully had gifted to me earlier that evening and saw that it contained 40 grams of carbs.  I pondered if 40 grams was what I was supposed to treat a low with and scarfed them all down.  That’s right . . . . I treated a low with a total of 56 grams of carbs and thought that sounded right.  Clear-headed, I was not.

Then there was another scary bad low last week.  Pete worked late and picked up dinner for us on his way home.  He noticed I wasn’t talking much, but assumed I was mad that he had worked so late.  (Poor guy.)  He said he realized something was wrong when my hand started shaking so badly that I kept dropping my food.  I don’t remember that, but I do vaguely remember him bringing me a juice box and telling me to drink it.  Things went kind of dark and fuzzy for a while, but I eventually realized I was covered in sweat and that Pete kept taking furtive glances at me with a concerned look on his face.  I had to ask him what happened, and as he filled me in he admitted how scared he was.

I don’t know what is going on.  I don’t know why my body isn’t handling lows well anymore.  I don’t know anything except that, for the first time in my life, going low really scares me.  I’ve lived with diabetes for a very long time and I’ve made lots of adjustments over the years.  This will be another one.  I’m making sure to test the second my CGM sends me a “low predicted” alarm.  Earlier this week I started to feel as if I might be slipping toward another bad low, so I treated and treated and treated some more.  Sure, I ended up near 200, but I will gladly correct that back down if it means avoiding another instance of realizing there is a chunk of time I can’t account for.  I will do what I have to do.  But it is important to know that even after 32 years and 8 months, I sometimes feel like I don’t know what I’m doing.  It’s important to know that diabetes keeps changing the rules  And that I do have a nagging fear deep down inside that any minute, diabetes will win.

We need a cure.

What They Should Know - DBlog Week Day 5

Welcome to Day Five of Diabetes Blog Week. If you are participating, don’t forget to link your What They Should Know post on this list.  (Please enter your Blog Name and the URL for your What They Should Know post.)


Today let’s borrow a topic from a #dsma chat held last September.  The tweet asked “What is one thing you would tell someone that doesn’t have diabetes about living with diabetes?”.  Let’s do a little advocating and post what we wish people knew about diabetes.  Have more than one thing you wish people knew?  Go ahead and tell us everything.

DIABETES IS HARD!!!!!  Diabetes is a constant balancing act and I fall off my tightrope just as often as I stay on, if not more.  So far I’ve been lucky and have always landed on a safety net, but I live in fear that my luck is running out.

I really try not to use diabetes as an excuse.  I try not to ask for special treatment because of diabetes.  I try to handle it gracefully and somewhat invisibly.   Most people with diabetes that I know are the same way.  We don’t want diabetes to stand in the way of our lives.  We refuse to let diabetes hold us back.  But maybe there is a downside to that.  All those times I don’t let you see me struggle.  All those times I smile and put on a brave face.  All those times I say I’m fine when I’m anything but.  All those times I lead you to believe diabetes is easy.  Maybe those are the times I’m doing the most damage.  Maybe I’m making the outside world really believe diabetes IS easy.  Why would they think any different?   Why would they think I bust my ass every single day just to live with diabetes?  Why would they think I need a cure?

Diabetes is a big part of the life I’ve been given.  I’m not going to wallow, I’m not going to complain.  My life is good.  But despite what I may lead you to believe, it’s very important for you to know . . . .

DIABETES IS HARD!!!

Thirty-Two

Today is my Diabetes Anniversary (Observed).  Since we don’t know my actual diagnosis day, just the month and year, I pick the 15th as my Diaversary because it’s half way through the month.

So today it is.  Today marks 32 years I’ve lived with diabetes.  And I’m struggling with what to say about that.  I thought about looking at all of the changes I’ve seen.  Urine testing to glucose meters the size of bricks to tiny meters to CGMs to non-invasive measures some day.  One shot a day to MDIs of long and short acting insulin to a pump to the artificial pancreas some day.  Exchange diets and no sugar to carb counting and yes I can eat that.

It’s amazing to see how far things have come.  I know I should be proud and thankful to be here and healthy.  But honestly, I’m struggling with this Diaversary like I never have before.  I’m not happy.  I don’t feel like celebrating.  Pete bought me chocolate truffles and champagne to celebrate, and when he gave them to me I burst out crying. I just feel tired. I feel really sad.  It’s been too long, and there is no end in sight.

I don’t know why I’m having such a hard time this year.  It’s not a milestone like 25 years or 50 years or something.   It doesn’t mark a significant portion of time, like next year when I’ll have lived with diabetes for 75% of my life.  It’s just a random number, thirty-two years.   And deep down I am proud and I do know how lucky I am to be here and healthy.  I can appreciate the really wonderful things, amazing people and great opportunities that have been brought into my life because of diabetes.  But I still feel like I’m struggling a lot with this Diaversary.

I guess it’s just that 32 years seems like a very very long time.  Probably because it is.

C-U-R-E

People living with diabetes need a lot of things.  We need support.  We need education - for ourselves and for the “clueless masses” who may try to judge us.  We need medication and insurance.  We need exercise.  We need strength and patience. 

But above all else, the one thing every person with diabetes needs is a CURE.  I have to admit, I’ve never really believed in a cure for diabetes - especially in my life-time.  But the Diabetes Research Institute, and their commitment to finding a real cure for diabetes, is starting to instill some optimism in me.


And that’s why I have made a donation to the DRI’s Be Part of the Cure campaign.  For a donation of $10 or more, you can upload your picture and story into the CURE mosaic, which will be printed as a giant banner upon completion and hung at the Diabetes Research Institute.  You even get to chose which efforts your donation will help fund.  If you donate $50, you will receive a mouse-pad that sports the final CURE mosaic.  I informed Pete that he is getting me one for Christmas - which really means I donated some of the money he would have spent on me for Christmas towards this campaign.  After all, a better chance for a cure and a mouse-pad mosaic of some of my favorite D-OC members are the best Christmas gifts I can think of!

To help build the mosaic and find a cure for diabetes, go to Be Part of the Cure and make your donation today!

Invisible Illness Week Meme

Did you know that Invisible Chronic Illness Awareness Week is just a few weeks away?  This year it runs from September 13th to 19th.  I came across a post on WEGO Health about the annual meme 30 Things About My Invisible Illness You May Not Know and knew I wanted to participate.

I struggled somewhat as I filled my meme out.  Part of me wanted to type in the safe answers, the first things that popped into my head as I read each item.  But that won’t raise much awareness.  So I decided to really give each item some thought and type in the answers that were most honest.  Some may surprise you.  Some may sound overly dramatic.  Hopefully one or two will make you chuckle or nod your head in agreement or teach you something about diabetes that you don’t know. 

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Type 1 Diabetes
2. I was diagnosed with it in the year: 1979.
3. But I had symptoms since: at least a few months before my diagnosis.
4. The biggest adjustment I’ve had to make is: realizing that sometimes, even if I do everything exactly right, my blood sugars will still go out of whack - and that this doesn’t mean I’m to blame.
5. Most people assume: I can’t eat anything with sugar in it.
6. The hardest part about mornings are: the same things that are hard all day long.  Diabetes is happy to mess with me at any time of the day or night.
7. My favorite medical TV show is: House M.D., although I suppose that doesn't count since it’s completely fictional.
8. A gadget I couldn’t live without is: literally as well as figuratively, my insulin pump.  Okay, I could live without it if I went back to multiple daily insulin injections (between 5 and 10ish injections a day), but my diabetes control would surely suffer.
9. The hardest part about nights are: getting to sleep despite the fear that my blood sugar could go low and this could be the time I’m not able to wake up and treat it . . .
10. Each day I take __ pills & vitamins. (No comments, please) I take 2 pills a day, plus iron, plus a weekly dose of Vitamin D.  I also do finger sticks to check my blood sugar 8 to 12 times a day and am connected to my insulin pump at all times except while showering.
11. Regarding alternative treatments I: get so angry at “snake oil” cure claims that do harm by spreading misinformation.  There is no cure for Type 1 diabetes.  There is no seed, oil, berry or magic potion that will make my body start producing insulin again.
12. If I had to choose between an invisible illness or visible I would choose: an invisible one - I suppose that is partially because I have no idea how it feels to live with a visible one.  I also kind of like knowing that I can chose who gets to know about my illness.
13. Regarding working and career: diabetes was a big reason why I left the stressful and unhealthy environment of my former job.  As for my future, I am hoping to find a job that will allow me to draw on my passion for Health Activism.
14. People would be surprised to know: that I feel broken and I fear being a burden to my loved ones.
15. The hardest thing to accept about my new reality has been: the realization that a cure in my lifetime is not likely.
16. Something I never thought I could do with my illness that I did was: live into my 40s and be free of complications.
17. The commercials about my illness: sometimes say “with our meter you no longer have to prick your finger for blood”.  What they don’t tell you is that you have to prick your arm instead.
18. Something I really miss doing since I was diagnosed is: just sitting down and eating.  No weighing food, no timing insulin doses, no need for a freaking math degree to calculate carb grams and insulin units.
19. It was really hard to have to give up: the notion that a low or high blood sugar means I failed.  I’m still not 100% sure I have given that up.
20. A new hobby I have taken up since my diagnosis is: knitting?  Cooking?  Gardening?  I was 11 when I was diagnosed, so there are a lot of them.  However, I have given up playing with Barbie dolls.
21. If I could have one day of feeling normal again I would: start my day off with a huge bagel, and maybe a donut.  Then I would swim and lay in the sun without worrying about my insulin pump.  I’d eat as much Mexican food as my stomach could take.  And follow it with ice cream.  I’d do this all without having to squeeze blood from my finger onto a stupid strip to see how this day has wrecked my blood sugar.
22. My illness has taught me: that I can be strong and weak at the same time.
23. Want to know a secret? One thing people say that gets under my skin is: “You’re not supposed to eat that!” Can I give you another one?  Because a close second is “My grandmother / uncle / other random relative had diabetes and went blind / had to go on dialysis / had their foot amputated.”  Really, what would make you walk up to me and say something like that? 
24. But I love it when people: ask questions because they truly want to understand my disease instead of buying into the myths about diabetes.
25. My favorite motto, scripture, quote that gets me through tough times is: It doesn’t have to be perfect; it just has to be better than it was.
26. When someone is diagnosed I’d like to tell them: you can do this.  Some days it will seem very very hard.  But some days you’ll just be on auto-pilot and everything will become a mindless routine.
27. Something that has surprised me about living with an illness is: that I’m not alone.  There is a huge community on-line who will love me and support me and know exactly what I’m going through.
28. The nicest thing someone did for me when I wasn’t feeling well was: let me know he loves me, in good times and bad.
29. I’m involved with Invisible Illness Week because: I want to do my part to spread awareness of all invisible illnesses.
30. The fact that you read this list makes me feel: a bit self-conscious but very grateful that you took the time to learn more about my illness.

Liar, Liar, Pants on Fire

I believe in telling the truth.  Honesty is the best policy and all that.  Even little white lies can cause a lot of trouble.  So I was surprised to realize that my pants are, in fact, ready to burst into flames.

It seems I tell lies on a regular basis.  Every day I lie about what it is like to live with diabetes.  Sometimes I wonder exactly who I’m lying to - the world in general or myself?  Either way, here are the most popular items on my Liar’s List.

• It doesn’t hurt.  This is the lie I tell about finger sticks and insertion sets.  The truth?  Lancing my finger and squeezing blood out does hurt.  Duh!  So does the needle that plunges into me during a site change.  Um, of course!  But I guess I’m so used to it and so desensitized by it that the pain usually doesn’t register or I just don’t acknowledge it.
• My CGM is awesome.  Don’t misunderstand.  I do love having a CGM.  As soon as a sensor expires, I put in a new one.  The information it gives is so helpful.  But the truth?  The technology still has a long way to go.  At times the readings are way off.  The weak signal errors drive me batty.  Some day CGMs will be awesome, but right now they are just better than nothing.
• Diabetes can be a pain sometimes, but it’s not that bad.  You say this all the time too, don’t you?  When people give you that pity face when they find out you have diabetes?  The truth?  Diabetes is a twenty-four hour a day, seven day a week, no time off for good behavior life sentence that I put a ton of time and energy into managing.  Yes, I can manage it, but it sure isn’t as easy as I may make it sound.
• I love having a pump.  I love my husband.  I love my cat.  I wouldn't ever trade them for anything in the world.  But my pump?  Well, making the decision to start pumping was absolutely the right one for me.  My diabetes control has gotten so much better since I attached myself to that little purple gadget I carry everywhere.  But would I trade my pump for a working pancreas? You bet I would.  That's not love - it’s just making the best of the options I do have.
• I can eat anything I want as long as I punch the carbs into my pump.  Ah, my favorite.  Of course, this one isn’t exactly a lie.  But a more truthful statement?
  

  I can eat anything I want as long as I punch the carbs into my pump - but some foods will make me spike up too high anyway - well, most of the time they will - unless they make my blood sugar crash, which might happen at random - and some foods are just too hard to figure out the correct bolus for so I just don’t bother eating them - although some are worth eating once in a while even if I spike up some because I love them so and I can correct my high blood sugar back down without feeling too crappy - and really I can go on and on for days trying to explain to you the intricacies of food choices and how to bolus for them and all of the factors that can throw everything off but I see you are starting to doze off already so I won’t even go there . . . .

How about you?  What is on your Liars List? 

White flag . . .

Lately I've just been feeling . . .  tired.  Tired of dealing with the lows.  Tired of counting each and every carb.  Tired of attempting to time out my dosing and meals.  Tired of the endless finger-sticks.  Tired of sticking infusion sets and CGM sensors into my body.  Tired of the itchy red splotches they leave behind.

Basically, I just feel . . . done.

I know, I know.  Having a bad attitude is fruitless.  Staying positive is important.  Diabetes isn't going anywhere.  I need to keep doing these things, no matter how tired of them I may feel.  And I AM doing these things.  My diabetes management hasn't slipped, even if my attitude has.

I'll keep going.  I don't have a choice, so I'll do what I have to.  I won't surrender.  I can't wave that white flag.  But sometimes . . .  sometimes I just get sick of it all.  And I wonder if I'm the only one who feels this way.

Dream a little dream - life after a cure. Diabetes Blog Week Day 7

Day 7 - Dream a little dream - life after a cure. To wrap up Diabetes Blog Week, let’s pretend a cure has been found. We are all given a tiny little pill to swallow and *poof* our pancreases are back in working order. No side effects. No more insulin resistance. No more diabetes. Tell us what your life is now like. Or take us through your first day celebrating life without the Big D. Blog about how you imagine you would feel if you no longer were a Person With Diabetes.

(|Source=[http://www.flickr.com/photos/50237000@N00/981742090/ The Cure Live in Singapore - 1st August 2007] |Date=August 01, 2007 at 22:13 |Author=[http://www.flickr.com/people/50237000@N00 momento mori] from Kuala Lumpur, Malaysia |Permission= |other_ver)

As an '80s girl, I find life after The Cure a bit tough.  The big hair, the make-up . . . you just don't see lead singers like that anymore. I used to play them all the time when I deejayed in college.  I wouldn't exactly say I had the Goth thing going on, but I do remember wearing black nail polish and black lipstick on occasion.

What???  Not The Cure?  But A cure . . .  for diabetes?  Yeah, well, when I was coming up with post topics this seemed like a fun way to end Diabetes Blog Week on a high note.  But as I sit down to write this post, it's tough - so I resort to smart-ass humor.  Because, to be honest, I don't believe I'll see a cure.

Don't get me wrong - I do believe in a cure.  I believe the children with diabetes now will see a cure - it's the reason I still do diabetes walk-a-thons.  I just stopped believing in a cure before my time runs out.

Let's say I'm wrong.  Let's say one day, I'm cured.  What would I do?  I think I'd automatically calculate the carbs in my meal before realizing I didn't need to.  I think I'd panic when my pump wasn't hanging from my hip before realizing I don't wear a pump anymore.  I think I'd reach for my meter for my pre-dinner blood sugar check before realizing my fingers are now a lancet-free zone.  I think I'd wake up thirsty in the middle of the night and worry I am high before realizing my blood sugar is always normal now and my house is just dry.  All of the things I do to manage diabetes have worked their way seamlessly into my life and doing them has become second nature.  I would be overjoyed not to have to do them anymore.  But I'm pretty sure I'll always have to and most of the time I am okay with that.


So yes, a cure would be awesome.  But I know I'll be fine without one.  And at least I'll always be lucky enough to have the D-OC!

What do you see?

Take a look at me.  Tell me, what do you see?

You may see my brown eyes, looking lovingly at my husband - or perhaps looking at him with some aggravation, depending on the day.

You may see my hands, holding five double-pointed needles with some thin yarn snaking through my fingers as I knit on the sock that dangles from the end.

You may see my clothes, the new dark-wash jeans I got on sale a few weeks ago - and perhaps you'll see a few cat hairs clinging to the legs.

You may see my purse, the huge tan leather bag that could probably stash said cat comfortably if I were inclined to bring her along.

You may see my shoes, the cute brown pumps that are surprisingly comfortable.

You may see my snack, probably a big cup of coffee and maybe a scone.


Now look again.  This time, instead of telling me what you see, let me tell you what you don't see.

When you look at my brown eyes, you don't see the two leaky blood vessels diabetes has caused - which my eye doctor must check every six months.

When you look at my knitting hands, you don't see how calloused and scarred the pads of my fingers are from the dozens of finger sticks diabetes requires each day to keep my blood sugar in line.

When you look at my new jeans, you don't see the small pocket I've sewn into the waistband to hold the insulin pump I need to wear all of the time to treat diabetes - nor do you see the Continuous Glucose Monitor stuck to my lower back.

When you look at my huge purse, you don't see that it isn't a hidden kitty that makes it bulge so - it's all of the diabetes supplies I must lug around.  The blood glucose machine, the spare infusion set, reservoir and battery, the emergency syringe and bottle of insulin, the fast acting carbs to ward off lows.

When you look at my pretty shoes, you don't see the risk of diabetes complications threatening my feet that I must check for each night.

When you look at my yummy snack, you don't see the wheels turning in my mind - trying to estimate just how many carbs are in that scone and how much buttery fat that will slow down my absorption of those carbs so I can attempt to punch the correct dosage on my insulin pump.


This week is National Invisible Chronic Illness Awareness Week.  When you look at me, chances are you can't tell that I live with a chronic illness.  You can't see that it fills every day with a million details and victories and failures.  You can't see that it touches everything I do - and everything I am. But look a bit closer . . . . deep into my eyes . . . . and you just might see how desperately I am STILL hoping for a cure.

Second nature

I've been on my pump for almost four months now.  It took me years to come around to the idea of even trying the pump.  I was "happy" with MDIs, because I had been doing them for so long. They were what I knew, and what I was comfortable with.  But I wasn't happy with my control.  My A1C's hovered in the high 6's and low 7's.  I'd only achieved a 6.4 once, and it didn't last.

I began reading about pumping on diabetes blogs and talked to other pumpers on a knitting site that has a great forum section.  And I spotted a pump on one of the instructors at the ballroom studio where Pea and I take lessons.  I decided I could do it too.

It was scary.  My first insertion set changes were done with every instruction guide I had spread out in front of me.  And it took forever.

Today I did a set change.  The instructions now stay somewhere in my Diabetes Drawer.  And the whole process takes only a couple of minutes.  It's all second nature.  That great, right?  Right.

But for some reason, it's making me really sad.  Not sad that I'm on the pump - I couldn't be happier with it and it's the best decision I've ever made (diabetes-wise).  But a bit sad that another diabetes-related thing has become second nature.  Sad that there STILL is no cure.