D-Rents need to know....

I've been MIA.  Life gets away from me.  Time passes and difficulties come up.  Sometimes I feel like talking about them and sometimes I don't.  I'm playing around with the idea of completely doing away with the blog, but it's nice to have someplace to go when I do feel like getting all my thoughts out.  So...we'll see.

There's something I want all d-parents to know.  Something I think they need to know.  Diabetes is a game.  Your children will play games with their numbers.  They'll play games with their condition.  It's a fact.  Sometimes those games are innocent and harmless, like aiming for a certain favorite number.  Sometimes those games aren't so harmless.  Like adjusting your numbers.  Giving a little too much insulin so they can have an extra piece of birthday cake later.  Giving not enough insulin so they can drop an extra pound or two.  I'm not sure that I have any wisdom to offer all of you in this area, except to be aware of the numbers, to pay attention to your children and to keep your eyes out for these games that your children are going to play whenever the opportunities arise.  It's not something to worry over-much about.  Your children have an advantage that I didn't in my childhood....parents who care, parents who contribute and watch and pay attention to them.  Parents who've shown them that they have value.

Childhood is rough sometimes and there are so many stages and elements of it.  One of those key elements is the idea that bad things aren't going to happen to us, the feeling of being invincible.  The lack of weight to future consequences.  With diabetes, there are so many consequences.  And so few of them actually make it into a child's brain.  I never thought seriously about the consequences of my disease.  I never really considered the idea that I might lose feeling in my feet.  That I might lose the ability to see.  Diabetic consequences don't play much of a part in the numbers games that diabetic children play.  I didn't take them seriously.  Most people don't.  Until it happens to them.  So now, I'm here, telling you about the diabetes complication that no one told me about, that I probably wouldn't have thought about anyway.  I've been having some issues over the last few months.  Nothing too big.  Just a general feeling of nausea.  Not being hungry.  Just run down and with a stomach that didn't really want me to put much into it.  And then, a few weeks back, I had a bad reaction in the middle of the night.  I sat on the kitchen floor, eating a baked sweetbread and trying to get my blood sugar up.  Crawled back into bed when it was safe.  Woke up a few hours later with stomach cramps, vomitting, violently ill.  Spent several hours being violently ill before crawling back into bed and sleeping some more.  I blamed it on the bread....maybe it was an allergy or something.  No one else got sick.  Just me.  Couple of weeks passed of me being back to slightly nauseous all the time, but nothing major.  And then this weekend....another episode.  Low blood sugar.  Lots of orange juice and some cookies to bring my blood sugar back up at bedtime.  Woke up at 2 in the morning, violently ill.  Orange juice is not good when it comes back up.  In fact, it's pretty damn awful. After being violently, painfully ill for five hours, I begged my husband to take me to the hospital.  He obliged.  They did nothing more than give me anti-emetics, fluids, and some really great pain killers, but three hours later, I was no longer praying for death.  I'm scheduled to visit the radiology department of the hospital at the end of the month.  The idea is that they will run a few tests to determine if I have developed gastro-paresis.  When they talk about diabetic neuropathy, this is not what I imagined.  But, this is a form of that.  Basically, the nerves controlling the stomach become damaged due to diabetes and the stomach fails to empty completely.  It sounds a lot more pleasant than it is.

Twenty-six years of diabetes this month.  I thought I was one of the lucky ones, one who wasn't affected by complications yet.  And there they were, lurking in the background, just waiting to sneak up and tear my life apart.  So there you have it, my wisdom to share with the d-parents....be aware that there are games being played.  Know that most of those games are harmless, but keep your eyes open for the ones that aren't so innocent, for the games that will come back and hurt your children in the future.  And somehow, someway, get them to understand that diabetes complications are not an "if".  For most of us, unless they can find a cure, the complications will be a "when" and what kind.  And the better care our children take of themselves, the better chances they have of minimizing those complications.  Time and diabetes will take their toll, regardless, but with proper care and management, their toll will be minor and much less painful.

Can we do this? Need YOUR help!!!!!

It's going to come as no surprise to anyone who knows anything about the DOC that a certain someone has been on my mind consistently for the last month.  I remember her in all my prayers.  I think about her throughout my days.  I pause at random moments to offer up a prayer for her and her boys.  Meri has touched nearly all of us in some way or another, and all in positive ways.  She is an amazing inspiration.  She encourages and supports.  And throughout it all, she shows us what it means to have grace and hope.  I've been at a loss for the last month as well.  I wish I had a million in the bank so I could donate it all to her and the boys.  I wish I could make a true difference for them.  I haven't been able to figure out what exactly I could do to help them in some significant way.  Lots of ideas have flitted through my mind...most have involved writing to Medtronic or the ADA or JDRF and telling them each that they absolutely need to hire this amazing woman to write for them, to be a diabetes advocate for them, to bring her into their organization in some significant way so she can change the diabetes world for the better.  And while those ideas still are flitting around in my head and trying to take form, my sister offered me up an idea that I want to bring here, to ask for help in making this happen.  My older sister, Debbie, reminds me of Meri so much.  She is an incredible mom to four boys (obvious similarity there) and is also one of the kindest, funniest people I know. She's only read a bit of Meri's blog, when I've posted links on Facebook.  And after a recent link, she called me and in her words...."you need to see if you can get Ellen to meet Meri".  It sounded so perfect of an idea to me at the time that I wasn't sure why it hadn't occurred to me earlier!

So....can we do this?  Can we all send Ellen notes regarding Meri and her absolutely incredible spirit and amazing story and how much she's inspired us all with her grace and hope and beauty?  I'm hoping we can get the word out and bombard Ellen sufficiently that she'll take notice!  If you'd like to participate, HERE is where you go to give all your details and tell Ellen about the amazing Meri.  Let's see if we can get this done!

The "CURE" Research

I've been letting all of this information stew.  In fact, I think I've let it stew so long that it's now well-fermented.  But I'll try to recall it all with as much accuracy and detail as I possibly can.

I mentioned a while back that I attended a JDRF Research Progress Summit.  The first part of the night was dedicated to the Artificial Pancreas Project, which you can read about HERE.  The second part of the night was dedicated to informing us about the research into a cure, AKA beta cell regeneration.  You see, in a normal person, beta cells are constantly regenerating.  As cells die off, new ones crop up and insulin continues to be produced.  So the newest research is in how to make those cells regenerate in diabetic bodies.  And how to protect the new cells from the attacking immune system.  I can't recall the names of the drugs anymore, but scientists have discovered a couple of common OTC/prescription meds that when combined, they can actually promote the regeneration of beta cells.  The trick is combining them in the right ratios.  Not only do they help the cells regenerate, but the new cells are "encapsulated", as the scientists called it.  For some reason, these new cells have a barrier around them that protects them from the immune system.  Obviously, there's still a lot of research they need to do on this...animal trials, human trials, etc.  But it looks promising for the future, right?

So why am I not jumping for joy at the thought that my diabetes might be cured?  I was diagnosed nearly 26 years ago now.  When I was diagnosed, the thought back then was that diabetes meant you had a bad pancreas.  So, they tried pancreas transplants.  And they ended up with worse problems, either because the new pancreas was rejected or for any number of reasons related to the fact that the original pancreas hadn't actually been "bad".  Thoughts changed.  Now they think the beta cells are bad.  Their vision has narrowed.  Their focus is now on some teeny tiny little cells.  But in my mind....I'm wondering if their vision shouldn't have broadened instead of narrowing.  You see....it's not the pancreas that's bad, it's not the beta cells that are bad....it's the IMMUNE SYSTEM!  How often do we hear that it's common for people with Type I Diabetes to also develop other issues, like Celiacs or Graves or Addisons?  The scientists are focusing all their energy on regrowing cells and protecting them from the rogue immune system.  But what about the rest of the body?  Is it worth it to be cured of diabetes if we're just going to end up with Celiacs.  Or worse!  Most of us in the DOC are aware of Laura's struggles with her gorgeous girl, Sophie.  Would we want to trade our diabetes in for Sophie's Crohns?

Don't get me wrong.  I still have hope that there is a cure out there.  I'm just not sure the scientists are heading in the right direction yet.  We shall have to wait and see.

The Road Not Taken

Dates.  Memories.  Time.  In every life there are dates that are forever marked by the memories they conjure and no matter how much time passes, every year, when that date rolls around, we stop.  We remember.  And then we move on again.  Today is one of those dates that is forever marked for me.  Here's the snapshot that pops into my head on this day:

I took this picture around 2:30 in the afternoon on August 10, 2009.  Lily had fallen asleep while watching a cartoon.  She was two years and 3 months old and no longer napped.  She woke up from this nap and immediately asked for a juice box.  She sucked one down in two minutes flat.  Just a few days earlier, she'd refused the same juice boxes because they were horrible and had no flavor.  But she finished this one and asked for a second.  And then asked for a third.  And I pulled out my meter, checked her blood sugar.  HI.  Fingers must be sticky.  Washed them.  HI.  Let's try a toe...this can't be right.  HI.  And my world crashed down around me.  

Don't get me wrong.  I don't spend this day feeling sorry for Lily or myself or our family.  Diabetes is tough, but it's not the end.  It can be dealt with.  But this day will always be marked by that memory.  I will always have that day imprinted clearly in my mind and it will always come to light when the sun rises on August 10th, no matter how many years have passed.  Once I get past that memory, then we can celebrate.  It's not so much that we celebrate the anniversary of Lily's diagnosis, but more that we celebrate the time we've had since.  We've had three years.  Three years of finger pokes, injections, infusion site settings, carb counting, meal planning, lows, highs, trials and triumphs.  Three amazing years.  My daughter has grown.  She's learned.  She's becoming more aware.  She's preparing for her first week of day camp for diabetic children.  She's preparing for Kindergarten.  Do you know how amazing it is that she's here, she's healthy, and she's learning and growing and becoming this incredible little person that she is?  She is a miracle!  When I think about these three years since and everything that has happened, this is what comes to my mind:

TWO roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood
And looked down one as far as I could
To where it bent in the undergrowth;	5
Then took the other, as just as fair,
And having perhaps the better claim,
Because it was grassy and wanted wear;
Though as for that the passing there
Had worn them really about the same,	10
And both that morning equally lay
In leaves no step had trodden black.
Oh, I kept the first for another day!
Yet knowing how way leads on to way,
I doubted if I should ever come back.	15
I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I—
I took the one less traveled by,
And that has made all the difference.	20

Robert Frost's poem, The Road Not Taken.  When it comes down to it, diabetes is the harder road, the road less traveled.  And when we embark on the path with diabetes, we all have to forge our own road.  Each step we take is a new one and each obstacle we face is our own to overcome.  We create our own path to take.  And three years of taking our path has led us to this:

And when it all comes down to it, isn't that just quite simply amazing?  

The Artificial Pancreas Project

I had an incredible opportunity the other night.  Our local chapter of JDRF held a Research Progress Summit at the Medtronic World Headquarters.  I couldn't pass up the opportunity to go and see what they had to say.  And I have to say, I was not disappointed by what I heard!  Not only did I get to meet a very funny d-blogger (Scott from Scott's Diabetes), but I also heard a great deal that I want to share here.

The first portion of the talk was given by Dr. Marlon Pragnell.  I'm not sure how well-known he is or even what his general place is in the research, but he gave a great talk about the Artificial Pancreas Project (APP).  He even went so far as to break down the the research for us and tell us about the six stages that are going to be pursued and how the artificial pancreas will evolve into three generations of devices over that span of stages.  The first stage is already available...in Europe, anyway.  It's the Medtronic Veo pump, which automatically suspends for two hours if a low is detected.  The next step is what they're working on now....figuring out how to turn the pump down/suspend when a low is predicted, instead of just when it's detected.  The third stage is adding in an increase in basal or an automated bolus when a high is detected.  How awesome would that be?  To have an insulin pump bring your blood sugar back down before it's even become elevated?  The next two stages after that are more complicated....they require new insulins to be developed and possibly new infusion options.  In order for the artificial pancreas to deliver insulin for meals, automatically and quickly enough, the insulin needs to affect the body quicker and the sensors need to sense the rise in blood sugar quicker.  One of the infusion options that the doctor brought up, which I have to admit scares me just a bit, is the idea of the infusion site being a "port" like what they use for cancer.  For me, fine.  For my daughter....not so sure I want her to have to undergo surgery to have a port put in!

Final stage and where the 3rd generation of artificial pancreas comes in.....a dual chamber pump that will inject both insulin and glucagon, as needed.  There's quite a bit of research and development that has to be done before any of that can happen.  We're all familiar with the glucagon kit.  The tiny vial with a powdery white pill and the big-ass needle with clear liquid that has to be mixed with the pill before injection.  Obviously, this part is going to be complicated.  An easier to use, more stable form of glucagon has to be developed first.

Okay...so I wrote all of the above about three weeks ago and then saved it as a draft.  I'd intended to move on to the second part of the summit and tell you all about the "cure" stuff too.  But, I'm having a hard time sitting down and writing about all of that.  I have some major misgivings about the "cure" portion of the research.  When I was first diagnosed, it was thought that being diabetic meant that you had a bad pancreas. Further research changed that and said your pancreas wasn't bad, just your beta cells.  Diabetes is much bigger than just the beta cells though.  Research is looking into how the beta cells can be regrown and protected, which is great....but.....the real problem isn't just the beta cells, it's what they need to be protected from.  The immune system.  I don't want to get too far into it, so I'll just say that in my mind, I wonder what messing with the beta cells will do to the immune system.  Would it then go attack something else in your body?  Because, honestly, I can deal with diabetes.  That's okay.  But I really, really, really don't want to have to learn to deal with Crohns or Celiacs or something tremendously worse than what I deal with already.

I'm going to give a quick update on my fitness stuff too.  I've been doing better.  I've been making it to the gym.  I've been exercising again.  And my bone spur isn't causing me any more problems.  I think a big part of my problem was that I was concentrating on the weight....I'd forgotten about the fitness aspect and just saw a lack of change in my body and my weight and I got discouraged.  Nothing changed for the last year.  I got frustrated.  I met with a new endo at the beginning of March and she promptly started me on Metformin, which is a medication for insulin resistance.  She's thinking that I won't lose any more weight until we break down my body's resistance to insulin.  It's a vicious cycle....the more you weigh, the more insulin you have to take.  The more insulin you take, the more your body thinks it needs to store up as much fat as it possibly can.  The more fat you store, the more insulin you need to take.  Round and round it goes.  I've been on the new med for a few weeks now, at full dose for the last week.  Time will tell if it will work.  In the meantime, I'm going to keep on exercising, keep on being healthier and more active, and I'm going to put some more effort into reading Ginger Viera's book, Your Diabetes Science Experiment.  She's a personal trainer/fitness coach with Type I.  I'm hoping for some new info and a new direction to take myself in!

Still Broken

The loss of my laptop is still keeping me from posting as much as I used to.  I find it much harder to sit down at a chair in front of an actual computer screen and write.  Not sure why that is though.  I've had the urge to sit down and write quite a bit and things I've wanted to write about, but by the time I get to the computer, it's all forgotten or I just don't have the mental energy to write.  Quite possibly that's because by the time I get to sit down at the computer with enough time to write, the day is over, the kids are in bed, and my husband is ready to crawl into bed and commence snoring.

Anyway, I had intended to write a couple of weeks ago.  I was planning a trip up north to visit my family and celebrate my niece's graduation.  I wanted to write about how to take exercise with you when you go on trips away from home.  And then, I just never got the time before the kids and I made the trek up north.  Between the five-hour drive up and the five-hour drive back, something happened to my mind.  Going back "home" has a tendency to mess things up for me.  It brings back things from childhood that I don't necessarily want to remember or feel again.  And this time, it brought me to a realization....I'm still broken.  I try to fool myself into thinking that's not true, but the fact is, I'm just not quite whole yet.

I've been struggling for months with taking the time to exercise again.  I manage a few days in a row and then I slack off again.  I've been blaming it on things....lack of sleep, the bone spur on my heel, rough nights with Lily....there are always plenty of excuses.  But the real reason....I just don't feel that I'm worth the effort.  I'm not on my list of priorities.  The kids, the husband, the house, the cleaning and a million other things are far more important to me than I am.  And that mentality is so deeply a part of me that I just have no idea how to go about changing it.  I can fool myself for a little while, but once I talk to my mom or return home, the facade is ripped down and I'm left feeling like nothing again.

I've written about my childhood a bit on here and honestly, it's not as bad as some.  Yes, there was a bit of physical abuse and neglect, but not nearly as bad as what some others have had to endure.  The only real problem that I'm left with now.....feeling unloved.  Growing up without affection, without feeling wanted or cherished, has left a hole.  I have very little self-value.  I know logically that the fault is not in me.  I know logically that my mother did love me, as much as she was capable of doing.  I know logically that my mother is self-centered and self-absorbed and that is the only reason why I was ever neglected or forgotten.  But deep inside, I'm not logical.  I'm still that little girl who wondered what was wrong with her that no one loved her or remembered her, no one offered her affection and understanding.  And that part, deep inside, that still hurts over that, makes the grown-up, logical me think that if I wasn't loved enough to be on anyone else's list of priorities, why should I ever be on my own?

That's what I'm struggling with right now.  I'm trying to figure out a why to heal that hurt child inside.  I have to find a way to convince her that she is loved and is worthy of being loved, that she's worthy of being on that list of priorities.  I'm just having a really hard time finding the right path to that conviction.  I know that I'm the only one who can change that for myself, which makes it all the harder.  There are times when I want to put the responsibility for it on others....my husband has been busy and stressed with work and hasn't had much time or energy to spend with me in the evenings.  That hurts and makes me feel less important.  But it's not his fault or his responsibility to fix me.  I have to fix me so that I don't take his lack of mental energy personally.  I have to figure out how to fix it myself and not put it on him.  I need to find a way to be a healthy person, inside and out.  I just wish the solution were easy to find.....anyone know where to find a user's manual for this kind of thing?

Quick apologies

I haven't been blogging much.  Not having a laptop is taking a toll on my desire to blog.  I don't like writing if I feel like I don't have privacy to write and since my husband is usually in the room with me while I'm on the computer, that cuts down on my desire to write.  But, I have a quick apology to make tonight.

Nikki, I wasn't meaning to single you out.  My views on the Bible were something I meant to include in the original post and I enjoyed reading your comment on that post, so please don't feel that I was criticizing.  I may not have explained well how I feel about the Bible.  I do believe that it is a useful tool for introspection and for inspiring our own Faith.  My issues with it are more how it can be used, how it is used, by some to justify how they view the world, how they condemn groups of people, how they use it to say God hates certain people.  God hates no one.  Every person, every living thing, is a creation of God and he loves each and every one of them.  Bad things happen in our world because God allows us free-will and free-will means that we are also free to destroy or build, depending on our inclinations and choices.

Reyna, I hope I haven't driven you away with my Faith talk.  I love seeing your comments.  I was raised in a multitude of churches as well.  My paternal family told me how I was going to Hell because I chose to have my ears pierced and because I have an incredible love for bacon (who doesn't?).  My mom bounced from church to church to church, depending on whether she was the object of gossip or the instigator of gossip (she loves to be the first to know things, but hates to have people talk about her....imagine that?).  I think between that and the environment of my childhood, it's no wonder I questioned the existence of God!  I'm finding as I get older though that the more I can let go of control of my life and believe that God is there to help me and guide me and hold me up when I no longer have the strength to keep going on my own, the more comfort I find in the belief.  Not to mention, the more people I say good-bye to in this life, the easier dealing with their loss is when I believe fully and whole-heartedly that I will see them again at the gates of Heaven.  I don't want to push my views on you or on anyone else.  We're all free to believe as we will or won't, worship as we will or won't.  Some believe, but object to organized religion (church is not a requirement for belief!).  Others don't believe at all.  For me, it's all good, as long as people are happy with how they choose to live.  One of the most incredible things about this world we live in is the infinite diversity!