Friday 28 September 2012

My Pump Has Arrived!

When the box arrived at my work from Animas I felt a wave of emotion.  I opened up the box eagerly and peered inside to see an entire new world of medical supplies.  I opened the box with my pump and there she was, nestled in the package all shiny and brand new.  It is hard to describe the excitement I felt (and feel).  I have wanted this since being diagnosed.  It represents so much to me.  The ability to live with a bit more freedom.  I look forward to eating on my own schedule, being able to sleep in on a weekend without so much worry and mostly being able to exercise with a bit more peace of mind and confidence.  I can't wait to start planning my next marathon and then seriously start exploring triathlons.  Lets be honest, I am really looking forward to not having to stab myself with needles 4-8 times a day.  I know that the highs will still happen and certainly the lows, but I just know it is going to make me happier.

Holding my pump in my hand also filled me with fear.  This little machine will be responsible for keeping me alive each and every day.  That is a fact.  I have never really thought of it in that way until now.  I am the operator that must place the commands and trust that it will follow my direction.  I have so much to learn and not a lot of room for error.  I have a million questions and am eager to learn all I can to utilize this to its max.

My little silver pump mostly represents hope.  The hope that I can slow down the complications I already have and the hope that I can prevent others.  The hope that I can be the athlete I want to be and prove to myself that I can do this.  I think it also represents hope for all of us living with diabetes, the hope that a cure may come one day.  If you look at how far the treatment of diabetes has come maybe this is possible.

For now I shall read my manual and learn what I can about my new pump.  She is about to become my best and most trusted friend.  One month until go time!

Monday 24 September 2012

Meeting another PWD (Person with Diabetes)

First I have to say that we had an amazing holiday! I have a post in progress about the trip and will post it shortly.  We saw so much...I fell in love with California :)  However this post is about meeting someone else with Type 1 diabetes.

We were in the town of Napa in Napa Valley and were picked up by our wine tour bus at 10:30am.  Altogether there were twelve of us.  We made our introductions and then shyly kept to ourselves.  When we were about 1/2 hour away from our first, of four, wineries and tastings I checked my blood sugar.  One thing I can say since being diagnosed is that I never hide it.  I am not embarrassed or ashamed and feel comfortable testing in front of strangers.  I do it as discreetly as possible however as I don't want to make others feel uncomfortable.  Anyway, I quickly tested my blood and noted that it was somewhat high.  I injected a correction and was confident the day would go well.  When I looked up I saw an older couple watching me.  The wife gave me a nod and wink and said to her husband "See, there is someone else".  Right away I was intrigued.  At the first winery we were served what they liked to call a Breakfast Wine (yes, they should market this!) and we started our first winery tour.  I saw the husband check his blood, make a face and then pull out his insulin pump to make a correction.  Well...I could not help myself from here!  I had just seen other bolus though an insulin pump!!  Something I had not see to date.  I cannot explain how giddy I felt. 

After lunch I hooked myself onto the couple whose husband had Type 1 diabetes and asked a bazillion questions about the pump.  My new found friend so graciously show me what the medtronic pump and CGM looked like and how they worked.  I got to see for the first time what a pump looks like, what the insertion site looks like and what a CGM looks like.  I was on cloud nine.  We had a great conversation about the benefits of he pump and also most deeply about the effects it has on our loved ones.  I listened to his wife tell me about issues he has had while being low and she explained how scary it is. It was good to have Ryan there to relate.  I am so very excited now to get onto my own pump!

Monday 10 September 2012

Packing for my Holiday

I am so excited to leave on holiday tomorrow.  Seriously excited!!  It is going to be a dream trip.  We fly into San Fransisco, drive to South Lake Tahoe to spend a couple of days, drive to Napa Valley to spend a couple of days and then into San Fransisco for four days.  We have a ton of stuff planned and it is going to be a fun filled vacation.  I will post more on our return to regale you of our travels. 

Now packing for a vacation can be time consuming.  Particularly one like this where will be doing anything from hiking to fine dining.  Fancy dress with shoes for one day, shorts and tank top with windbreaker for the next.  I sat down the other evening to make my list to make sure I don't forget anything.  It really struck me how much extra stuff I have to pack now that I have Type 1 diabetes.  From all the reading I have done they advise to bring extra just in case, all of this amounts to quite the haul!  Just to give you an idea of what I will be packing to manage my disease.

Lantus insulin pens x 2
Novo-rapid insulin pen refills x 2
Little ice pack to keep all the insulin cold
200 test strips
Needles x 60
Lancet needles x 20 (no I don't change them every time I check, bad me)
Extra insulin pen
Glucose tabs
Glucagon shot
Letter from my doctor confirming that I must carry all of the above on me
Medical ID for my wallet
Medical ID for my wrist

I think this sums it up.  And this must all go in my carry on. Good thing the only other thing I bring on board is a book and my Iphone. I have only flown once so far with all of this stuff and I was extremely nervous about the whole thing.  I was pleasantly surprised that the staff seemed knowledgeable about Type 1 diabetes and even though they searched through everything they did not blink an eye.  It will be interesting the first time I fly with an insulin pump on!

Well that is about all!  Off to sunny California we go :)  This is how I fee right now:


Friday 7 September 2012

One Year

One year ago today my life changed forever.   September 7, 2011 is a day I will never forget.  Out of all the "big" days in my life, none of them are as clear as this one was.  I can tell you what I had for breakfast (weetabix with milk and a Starbucks coffee) and  I can tell you what I was wearing (a grey pinstripe summer dress from H&M, size 0).  I can tell you how I felt.  Exhausted, exhausted to the point of collapse, stressed, thirsty and hungry.  And skinny, way to skinny.  Pretty much how I had felt for quite some time.  

I will never forget the words telling me I had a serious chronic disease, Type 1 diabetes.  My reaction was so calm, I could not move or talk.  I was in a dream, a nightmare...instant denial.  I will never forget the first close to getting the needle in and then me breaking down.  The sudden knowledge that this was it.  Never again would I eat whatever I wanted, exercise whenever I wanted...go to sleep without fear.  I had a disease that was eating away at my body - causing destruction that may never stop no matter what I do to prevent it. Each and every day I read of young, seemingly healthy, model Type 1 diabetics who lose their lives to this disease.  I read these stories and it scares me to my very core.  On that day I was given a life sentence and a hell of a lot of responsibility.  My survival is in my hands, it is up to me...and me only.  And even then, a lot is left to fate.

I am not quite sure that I can express how I feel today into words.  I don't feel that it is a day to celebrate.  It was the worst day of my life.  Sound selfish?  Well it is selfish and that is human nature.  Our ultimate instinct as human beings is to preserve our own life...and I can't help but feel that I am failing. The outside world sees a happy girl with a smile on her face, however no matter how hard I work at it, no matter how much I eat well, exercise regularly, no matter how positive I stay and how I carry on with my day to day life, it is there.  It is part of me now.  It's not leaving and is a serious monkey on my back.  I appear to be a well young women but inside no one really knows what is going on and how damn hard this is.  I try to explain to others, but get frustrated and then go quiet once again.  I have shed more tears in the last year than I have in my entire life.  I don't talk about it much and rarely will show this to the ones I should.

The last year has been the biggest challenge of my life.  Despite the amazing support I have received, and I mean amazing (you all know who you are)  I cannot express in words how it feels to live day to day with this disease.  It is always there, always in the back of my mind, it never gives me a break, never leaves.  Every decision I make during the day has to take diabetes into consideration.  Whether it be the food I eat, the insulin I have to take, the activity I do, the amount of sleep I get, the time of the month it is, the stress I feel...all of it effects my diabetes.  Hell, even if all of this is under control, 9 times out of 10 it throws you a curve ball anyway.

So on this day how do I feel?  A part of me is extremely glad and grateful that I finally got to the bottom of what was wrong with me.  I really don't think that I would be here today if this had not been discovered.  I do feel like a different person, some for the good, some for the bad.  I am much more aware of my body and what it needs.  I have never ate this healthy, ever, it is kind of sickening.  I have never appreciated life more.  I have stopped taking thing for granted.  I look healthier than I have for years (well at least I think so, the stick woman thing did not suit me).  I have a ton of energy and feel like my drive to live and accomplish my goals is back.  These are the positives.

Mostly what I feel is anger.  I thought by now I would have let go of the anger, but I have not.  I am angry that I have had to go through all of this, suffer with so many complications, lose my fitness and generally be dealt another blow in life.  I feel that I have dealt with enough in my life (that would require an entire new blog to explain my life and I am angry I have been dealt another bad card).  With the anger comes frustration to an extreme and unbelievable sadness.  In a totally irrational way I feel like I have failed myself, that I am weak.  Each and every day feels like a battle, so much self judgement.  Every time I check my blood sugars the four second delay sometimes feels like judgement hour.  What have I done wrong? Ate wrong? Calculated wrong?  So many emotions tied to each and every reading.  So many emotions tied to my food decisions and insulin decisions.  So many emotions tied to every high and low.  I get stages of feeling so grumpy and teary and it almost always is because of wonky blood sugars.  I used to be able to get up and run 20km without blinking an eye. Breaks me that now it is just not so easy, never will be.  My frustration is huge.  I eat better than I could ever imagine, exercise diligently and get great sleep.  I have trouble losing weight (which my doctor assures will change as my body adapts) and I cannot go for my beloved long run without ID, glucose, glucose monitor, test strips, medical ID and money just in case.  This makes me feel weak and vulnerable.  I certainly don't want pity and I definitely know that there are others much, much, much worse off.  But this is how I feel.

Perhaps the only bigger thing I feel than anger is determination.  I very much want to tell diabetes to F' itself.  I have always been stubborn (albeit quiet on the outside, but extremely stubborn and determined on the inside which may surprise a lot of you).  I am determined to get the best control that I can, to learn as much as I can, to do the things that many may think I can' be me.  Sounds cliche but I will not allow this disease to determine who I am.  I will run another marathon, I will do a half ironman and goddammit one day I will be an Ironman :)

Where do I go from here?  I have to learn to accept that my old way of life is no longer here.  I cannot indulge as I did in food, exercise, stress, lack of sleep etc. without the risk of further complications.  I have to learn to accept that this is the way it is and stop feeling sorry for myself.  I have not only diabetes but celiac as well.  I cannot eat a simple sandwich or eat whatever I want...not if I want to be well. I must take my nutrition extremely seriously and educate myself on how to feel well.  But....I have the insulin pump coming and this will give me a new lease on life! I know it!

So today all I can do is feel proud for how far I have come...and let go of the life I had.  My goal in the next year is to educate people around me and perhaps people who do now know me about what it is like to live with Type 1 diabetes.  It is a very serious chronic disease that the public need to know about.  They need to know that we deserve a cure...we need a cure. 

Today I mourn the old me.  I am still me, but different.  I have come a long way in a year and to be honest I am not sure how I got through it.  There is one person in particular who has been by my side the entire way and he knows who he is. I love you.

An anniversary that does not require champagne...but perhaps deserves a pat on the back.