A Cure?

The last 3 days have been the irritating the crap out of me kind of days.  Bravo is exhausted; I am exhausted, and honestly just frustrated. It seems my pancreas decided to HELP again...but now it is helping WAY too much!  I am one of those LONG HONEYMOONERS!  Who ever named the phasing out of the pancreas, as a honeymoon was CRAZY!  To me a honeymoon means a pleasant time…involving lots of fun!  If I had married a jerk like diabetes I am pretty sure it would now be buried in the west desert and I would be claiming NO KNOWLEDGE of its demise!

Think about the similarities between diabetes and a bad partner!  It always interrupts your life when you least expect it!  It is always butting in when you are seriously focused on something else.  It brings many days of intense sadness and heartache.  Sometimes its actions make you throw up. Sometimes its actions make you really edgy and frustrated.  Sometimes (A LOT) is makes blood flow (every time we test)!  Sometimes it just nags at you till your brain fogs over!  Sometimes it steals your memories and tries to sap the joy out of your life!  Egad…. I am honeymooning with Jeffery Dahmer!  I want a DIVORCE NOW!

I AM JOKING!  Sort of!   With each passing day my memory of life without diabetes gets less and less. With each new day it becomes more integrated in my life.  It is ALMOST like breathing anymore.  I still don’t like it but I find myself making friends with it.  There are many aspects of it that I don’t like and don’t agree with but I am getting comfortable with it! Then because it is diabetes it has to go and do something to just irritate the crap out of me again!  I refuse to let it be a serial killer.  I refuse to let it be a joy killer.  Sometimes I have to re-negotiate with my own body but I WILL NOT LET diabetes win!

Can you imagine what life would be like without diabetes?  What if there was a CURE?  Would life be any different than it is now?  Are you sure about those thoughts?

Deep breathe here…EVEN IF THERE WAS A CURE I AM NOT SURE I WOULD GO FOR IT!  First off, as with most medical technology I want to make sure it is proven and getting excellent long term results.  I would hate for the cure to come and then 20 years later find out it caused something else to go wrong with my body.  I am almost grateful to diabetes in many other ways.  It forced me to take a good look at myself and get my act together about how I was taking care of this body.  It has allowed me to meet some of the most incredible resilient people on the planet.  These incredible people that share my journey and challenges with diabetes, maybe slightly different path but they UNDERSTAND!  It has allowed me to take my love and knowledge of dogs and the disease and combine that knowledge into helping many amazing people!  So while I hate diabetes I really am grateful for the amazing people have met and whose lives have touched mine!

Ten Things I Can’t Live Without

This is supposed to be a list of 10 things I couldn’t live without, but it is going to be shorter than that.  We all need basic necessities of things like food, water, and shelter!  I could turn this into a product review of diabetes products, but instead I am going to make it short and sweet.

4.   I need/want my dog!  I would take Bravo or Radar over any meter or continuous blood glucose monitor!  Bravo is good enough that he runs 15 to 30 minutes ahead of a meter and 30 to 45 minute ahead of the CBGM.  I use my meter only to confirm what he is telling me! So if I have to do without some important things…I will take my dog! 

3.  Meter/Test Strips:  Must have when diabetic to find trends to keep us feeling optimal!

2. Needles:  prefer the short fine ones they hurt less!

1. INSULIN:  This is the one thing that I simply cannot do with out!   Without this precious hormone I would not be long in this world!  If it were not for insulin I, and others like me would slowly starve to death, as insulin is the hormone that we need to help our bodies process food correctly!

Nothing like keeping it short and simple…especially when your life depends on it!

Keep Calm

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As a insulin dependent diabetic I hear all the time…”I could never do all the shots…I can’t stand needles!” I always reply, “First off I seldom have to do shots since I am on a pump but you should see the size of the needle that inserts the canula!  Second off…you could if your LIFE depended on it!” 

The Best Conversation I had this week...

Best conversation I had this week was with a good friend who was asking questions about diabetes!  I want to share with you some of the information that I shared with her!

DISCLAIMER!     I AM NOT A MEDICAL PROFESSIONAL!!!! 

It never fails to amaze me that people who deal with this stuff day in an day out fail to get the proper education of how to deal with the type 1 diabetes and for that matter any kind of diabetes. However I have to live every day with this disease and I want to know as much as possible about it!  I am not a patient enough person to have to wait 48 hours to hear back on what rate changes I should make…but I do want to be SAFE.

At first I read everything I could get my hands on!  Then I talked with as many people that I could find about their experience.  Then I found an awesome diabetic educator who also lives with this disease! I took in as much information as my little pee brain could hold!  I wrote down pertinent stuff in a notebook and I LOGGED EVERYTHING I could that might have an effect on my BG’s!  Then I started thinking on it…tweaking small changes here and there…looking at cause and effect.  I am not some brilliant individual….I am just driven to figure things out!  If I can do it SO CAN YOU!

Here are the some of the more key points that I shared with my friend.

1.     HOW LONG IS YOUR INSULIN ON BOARD?  To me this is the first question that has to be answered.  It varies from person to person and sometimes even varies at times of the day but you need to know HOW LONG YOUR INSULIN IS ON BOARD!  When we start pump therapy the doctor gives us a number that is programmed into our pumps as to the amount of time our insulin is on board or the insulin action time.  I remember thinking when I heard the number “how can you be sure?”.  Medicines do funny things in my body…they don’t always work the way they are suppose to.   Given that I was immediately going “ummmmm how do we know?”  They then told me you TEST to figure out how long your insulin is on board. You can eat a safe balanced food that you know exact carbs of and you bolus for it then you test every half hour until you no longer see a 30 point drop in an hours time.  My IOB or Insulin Action time is 2.5 hours with the insulin I am currently on!  Once I learned that everything sort of fell into place for me.  I set my basal patterns up in 2.5 hour increments and began to tweak it down!  I learned that if I had a low or high (UNRELATED TO BOLUSING OR STACKING INSULIN) at a particular time to count back 2.5 hours and make adjustments there because that was where the problem was.

2.     MAKE SURE YOU ARE BALANCING CARBS TO PROTIEN!   The way I understand it is that protein elongates the action of the carb so we don’t get such nasty spikes.  Protein is the thing that softens the blows of the carb! So I need to make sure that I eat 1 protein for every 2 carbs. I actually tend to be closer to one to one. 

3.     LOG EVERYTHING!  If you eat it, do it, dog alerts, times, etc WRITE IT DOWN!  You can see trends and patterns that you might otherwise miss!

4.     FOCUS ON THAT MOMENTS NUMBERS ONLY.  When you stay focused and intent on where your numbers are at RIGHT NOW it makes dealing with it that much easier.  Yes you need to be aware of all of them but all you can attempt to fix is that which is occurring RIGHT NOW!

5.     Diabetes is a disease where EFFORT DOES NOT ALWAYS EQUAL OUTCOME!   Give yourself a break and just do your best!  That is all any of us can truly do!

6.      TALK!  Talk to as many people as you can.  Our experiences vary so much that sharing experiences is critical!

7.     READ AS MANY BOOKS AS YOU CAN.  My 2 favorites are THINK LIKE A PANCREAS and PUMPING INSULIN!

Hopefully listening in to my conversation will help you or someone you know just a little! 

My Choice: The Emotional Side of Diabetes FOR TINA!

Yesterday I sort of touched on this a bit, but a friend and mother to a T1 ask my to write about this from my perspective.  What it is like?  What I experience? How does it make me feel?

When I am low, I have stages of emotion that I go through, that I can remember SOMETIMES!  You need to know that most of the time when this happening I have ZERO AWERENESS to it.  As I drop low, I notice that my patience level drops.  Little things just irritate the crap out of me!  I am terse and edgy in ways that I normally would not be.  As I keep dropping I seem to enter my own little world.  From my vantage point things seem to move slower and almost freeze in time. Sometimes I get lost in what I am doing.  I get lost in my 6ft by 8 ft bathroom and cannot get out so I do something like clean. I will wash the mirror 5 times or I work extremely hard to get that darn black speck out of the tile grout.  I am very focused on ONE THING but it is usually the wrong thing!  It is during this time that I KNOW that I should listen to my dogs but for some reason I have NO CLUE what they want or what they are trying to tell me!  I honestly am not trying to be difficult but honestly I usually am.  It is also during this stage that I ABSOLUTLY DETEST BEING YELLED AT OR TOLD WHAT TO DO!   I HATE IT!  I am normally fairly compliant as long as you I have reason to be…but during this stage it just PISSES ME OFF when someone TELLS me what to do.  “YOU NEED TO CHECK YOUR SUGAR!”  “YOU NEED TO EAT”  “EAT!”  “TREAT” ARGHHHHHHHHHHH   Inside I just want to explode at someone or something!  My dogs alerts as this is happening get very direct and to the point…. Bravo is very polite but persistent…Radar well he is like “Screw it…you want to fight…OK  I will fight you and I am going to NIP you till you fix it!”  Next I hit the absolute quiet zone.  I cant talk and from what I have been told I am very pale and my eyes are gone but my body demeanor is “IF YOU COME ANY CLOSER…I AM GONNA KICK YOUR BUTT!”  My friend Kim who is a CDE and I went on a trip early after diagnosis.  During this early time my pancreas would sometimes just MASS PRODUCE INSULIN and you could give me a glucagon shot and I still wouldn’t get above 60!  It was a very nasty time of my life as far as the diabetes goes.  We were in a hotel room when I took a hard sudden drop.  Kim knew what was happening and was being very direct with me. CHECK!  EAT!  DO THIS!  DO THAT!  Honestly I remember only feeling ticked off!  I don’t remember anything else.  I got so obstinate with her that she was throwing food at me from across the room and I would either feed it to Bravo or would put it under her pillow!  Eventually the carbs kicked in and my brain came back.  Fortunately for me Kim loves me and has a really good sense of humor and out about diabetes!  For me when I am low what works best is to set my meter and my treatment in front of me and just BE QUIET!  Inside of me here is what happens I can see it and I KNOW what I need to do but the problem is NOISE CONFUSES ME!  So if you simply say “YOU SEEM LOW, WHAT ARE YOU GOING TO DO ABOUT IT?”  I will respond and fix it.  Yes it is perhaps slower than you might want but it will get fixed! Or you can just let Radar fight it out with me!

Highs….for me are different.  I am still irritable and edgy but I am not confused or lost.  I am foggy!  My brain is mushy but it is very different than a low.  With a high I just want to LAY DOWN AND SLEEP!  My overall outlook about life and the world is very dim when I am high.  My perspective is very pessimistic!  The glass is half full...no it is a quarter full.ah crap “WHO DRANK ALL THE WATER!!!!!! GRRRR  Why would you do that to me! “ It is like a half awake and cannot get the fog out of my head.  “OK I think I will take me and my bad attitude and just go to bed!” Thinking and memory are far harder!  How bout I just sit here and stare off into space?  Ohhhh and dear Lord please make sure a bathroom is close when I am high.  Anytime my blood glucose is above 180 my bladder size starts shrinking.  At 300 it is the size of a walnut and you might as well hook me up to a garden hose!

So how does this all make me feel about myself????  Well I try to stay proactive!  I try to do my best to not let it win.  But I have to be honest…..it gets really old sometimes!   I try to laugh and find the humor in the stupid things that I do when I am low. But you want the truth???  Sometimes I fell absolutely STUPID and IGNORANT! I was NOT RAISED to do STUPID THINGS! I HATE THAT I DO THOSE THINGS!   I laugh and I make fun of it later but honestly that feeling of being stupid, being lessor, not being able to do something that normally is very easy MAKES ME MAD!  MAKES ME WANT TO CRY! MAKES ME WANT TO THROW A TEMPER TANTRUM!  But then something else starts happening…..I start challenging the disease.  I dig for new ways to get ahead of what ever is happening.  I document. I log. I write.   I FIGHT BACK!  Someday this disease MAY WIN..but it is NOT HAPPENING TODAY!  I will not allow my PANCREAS TO RUIN MY LIFE!  I will not let it take my joy!  I will not let it take my hope!

This is only my experience.  I do not speak for all diabetics. This is what happens in my head.  I have to find my FIGHT drive!  But then sometimes I just have to practice FINDING CENTER!  This disease is going to be here forever. I don’t have a choice because at this time there is no cure.  So since I have the lemon….I will try to make lemonade!  You bring the ice!