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!

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!

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:

Weeeee

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 injection...so 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't...to 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.

One More Complication (that I know of)

I have been very hesitant in publishing this post.  Not only do I feel that a lot of my posts are quite depressing, it involves a part of my body that I have always been very self conscious about.  When asked if I would ever have plastic surgery the only thing that I would ever have done is to this part of me.  It is my TEETH!  Ever since my adult teeth came in I have not been overly fond of them.  Every dentist I have seen has always commented on how small my teeth are, like a child's.  The tooth to the right of my big tooth grew in as a peg so I have always had to have a cap over it.  The second tooth to my left big tooth is still a baby tooth and looks terrible.  Rarely will you see a picture of me smiling with my teeth showing.  Silly yes, but very real to me.

So with that background you may understand why the complications I have suffered with my teeth are slightly devastating to me.  In January 2011, seven months before diagnosis, I was outside shovelling the ton of snow that had fallen on my walk the night before.  I had to shovel myself out of the house to get to work.  Well in true Jocelyn fashion, I somehow managed to slip and catch the shovel with my two front teeth (really, I should not be allowed to operate any kind of tool, I am the worlds biggest klutz...well maybe my sister is).  As soon as I took a breath of cold air the pain hit.  I had managed to chop, not chip, both front teeth in half.  I got myself together and made a call to a dentist near work and they agreed to see me right away.  

The dentist fixed my two front teeth beautifully and did an examination of the rest of my mouth.  She was interested to note that some of my gums were receding and felt that it was quite unusual for someone my age. She booked me in to have my gums sealed and sent me on my way.  Just three appointments and my benefits were used up!  

Fast forward twelve months.  I went to see a new dentist here near where I live with a few complaints.  I had noticed that my teeth felt "soft" and that my gums continued to recede.  I also had some mild pain in my teeth.  I have to say that the dentist was wonderful.  He took one look in my mouth and had me sit up.  He knew that I had always attended the dentist regularly and had never had a cavity in my life.  He knew something was up and wanted to know what had been going on.  I explained my entire story and we went through all the meds I was on at the time.  He then proceeded to tell me that I had some serious damage to my teeth.  About eight cavities, serious gum receding, a rotten baby tooth and that the peg tooth under the cap was decaying.  I would have to have fillings, gum repair, two teeth pulled and two crowns put in.  I was shocked.  How could all of this had happened in only twelve months?  He explained that diabetes does take a toll on a persons teeth as fluctuating blood sugars and the use of man made insulin effects them.  However he said that it usually is a very slow process that can be managed with regular check-ups and work.  He felt that going undiagnosed had taken a serious toll on my teeth.  Also I was on a very high dosage of Neurontin for my nerves at that time and he said that Neurontin can actually rot the teeth. Great. In trying to fix one problem another one had been caused.

The dentist laid out my treatment plan to get my teeth back into shape...fifteen appointments were scheduled.  I attended my first appointment, was frozen to the eyeballs and had some work done on my top right gums and teeth.  During my second appointment he finished the work that he had started in the previous appointment and filled one of the eight cavities.  I went to check out and was stopped by the receptionist.  I owed $280!  I had never thought much about how much all of the work was going to cost and was stunned to see that I had already burned through my coverage.  I asked them if they could give me an estimate of how much it would be to get all of the work done.  They advised it would be anywhere from $8,000 to $12,000 of work.  They confirmed that Alberta Health won't cover my dental costs even though the damage was as a result of my disease.  I cancelled my remaining appointments and left in tears.

That day was a bad one.  I was mad, so damn mad.  I really felt at that moment the world was against me.  I had been through hell in a period of six months and felt like I had been punched in the stomach once again.

It won't be long until December comes and my coverage kicks in again.  I will return and see what is desperately needed to be done and then wait it out again.  My teeth bug me on a daily basis, but the pain is not too bad. I am worried about the two teeth that need to be removed and have crowns put on as they bug me the most, but unfortunately those are the most costly. 

Those who know me well know that I smile...a lot.  But I make a point now to never show my teeth.  It is a complication that I did not expect but now that I have done a lot of reading about it, it is quite common for people with Type 1 diabetes to suffer with teeth problems.  Is it fair?  Not at all.  There is not much I can do about it at this point so I try not to stress over it too much.

Well that is it folks.  Probably the most personal blog entry so far as the topic of my teeth is a sensitive one for me.  If any of you know a dentist that likes to do free work be sure to let me know! I can make a mean banana bread and peanut butter cookies!

Wordless Wednesday

Hee hee.

Totally Pumped for my Pump!

Cheesy title I know, but it is exactly how I feel right now.  I am officially going to be pumping insulin by the end of October!  

I knew as soon as I was diagnosed with Type 1 diabetes that I would eventually want to go onto pump therapy.  Not only will it mean not having to stab myself with needles four to six times per day, it means that I will have more freedom and flexibility when it comes to my eating schedule and exercise regime.  On injections it has been very frustrating for me to return to the level of activity that I want to.  I find that after running for about 10km my blood sugars tank.  I know that I can eat carbs to help stop this, but who wants to mow through carbs for a run less than an hour?  Also I have found that I have to eat on schedule otherwise my sugars either crash or fly sky high.  Being on a pump will mean I can eat when it works for me, accurately dose for the carbs I eat and also I will be able to get back to long distance running and hopefully (if I get a bike), triathlons.  I know that being on the insulin pump won't take away the lows and highs, I know it will be just as much work (if not more) than daily injections, but it is going to be so worth it!!

I debated for some time over which pump would suit me best.  It was between Medtronic and Animas.  After doing a lot of research and consulting with each pump company I have decided to go with Animas.  The remote bolus ability and the fact that it is waterproof are what made me decide to go with the One Touch Ping.  I love that the pump will be able to tell me if I have insulin on board already to avoid stacking insulin and that I can adjust the basal rate depending on my planned activity.  I really love the thought of not using needles all of the time!  Sometimes my stomach and legs look like connect the dots with all the little bruises.  I was very impressed that both companies offer payment plans with no interest.  My family generously gifted me the down payment and then I have 30 months of payments to make.  This has taken a lot of stress off my shoulders and given me the ability to go ahead with it all.

I have to admit that I am very nervous.  It is going to be a huge learning curve and it will be strange to have a device attached to me all of the time.  I have about a bazillion questions and am sure that I will drive my diabetic educators, Animas rep and friends that have experience with pumps nuts.  I will get the pump during the first week of October and then attend the Grey Nuns on October 25 for my pre-pump training.  They will then send me home with the pump and saline solution so I can practice all of the features.  I will then return on October 30 and start pumping real insulin.  Only two months and eight days of injections to go :)