Mysterious Roses

Today someone left this mysterious vase of roses on my porch while I was eating lunch with my mom.  It was just the kind of thing I needed to turn my day around.  It is wonderful things like this that make me feel loved when I'm at a point in life where I feel so alone.  I used my deductive reasoning and impeccable sleuth power to figure out who they came from (though I may still be wrong) but I will keep that to myself.  I thank this person from the bottom of my heart and soul for brightening my day, my week even.  Good days are hard to come by in my life so little things like this turn into big things in my dull, daily life.  They are cherished and loved.  So thank you to whoever put these together and dropped them off on my porch.  They are truly a light in my dark world.  Thank you.   

Being The Star Of My Own Life

"I realized at once that a great actress can never be greater than when she's starring in her own life."  ~Flavia de Luce in "I Am Half-Sick of Shadows," Book 4 of the the Flavia de Luce series.

I love the Flavia De Luce series.  I am on the fourth and last book of the series and the whole series has been most wicked.  It's wizard writing, most witty.  I highly recommend it.  But as I was reading it this morning, I came across that above quote and it awakened something in my own soul.  It first called to the burn survivor in me and then it quickly sang to the part of my soul that is actor through and through.  Flavia couldn't have said it better: a great actress can never be greater than when she's starring in her own life.  Hearing that makes me want to be a better star of my own life for if I can't be a star in my own life, how can I possibly be a star in the world?  It may also help me get out of the funk I'm in if I step up to be the star in my own life.

I often feel like a complete slug, not even a supporting character but rather in the chorus of my own life.  That just isn't right.  One should be the star of their own life.  One should never play second fiddle to someone else in one's own life.  It's important to demand the leading role and demand the big, private trailer.  Otherwise the role you play in someone else's life is no greater than the one you play in your own, even if it is a leading role in someone else's life.  It is your own life that the credits and first billing counts.

I have not been playing the leading lady in my own life.  Not even a supporting or character role.  I've been in the background of the chorus just coming on when I'm supposed to and saying the four word lines at my cue before slipping back into the background to disappear.  And in my own life!  It's sickening to me on two levels:  1) that I'm settling for background work in my own life and 2) that I'm settling for background work in my own life when I'm a leading lady to the core!  I've played a lot in the chorus but I've always known in my heart that I was a leading lady and I got a chance to prove that several times in the theater, both in my younger life (high school and college) as well as my adult life (New York projects).  And when I got my chances to prove that it was like a cat call to my acting heart and soul.

So why have I settled for the background of the chorus in my own life?  I've only done so since my accident and it's because of my accident, because I don't see myself as a leading lady much anymore what with my scars and all.  When really I, above all else, should at least be the leading lady, the star, of my own life.  I want so much to return to film and theater but right now that just isn't in the cards for me.  I've got surgeries and healing going on.  But in the meantime there is a spotlight I shouldn't shy away from...the spotlight of my own life.  I need to step in, raise my head and embrace my own life like a star in the greatest drama since Gone With the Wind was in 1939.  If I can't be the greatest movie star since Meryl Streep right now in the real world that I've so desperately wanted to in my heart, the least I can do is be the best star in my own life until and still even after I make it again in the real world.  Flavia's got a real point there.

An Overview on Diabetes and the Pump

What does it mean to be a Type 1 Diabetic?  Well I was pretty sure I knew since one of my older brothers is a Type 1 but I can always learn more.  When I learned that I was actually a Type 1 about 6 weeks ago, my doctor wanted me to go to this two part class called "Insulin Forward" where you learn about the disease, nutrition, carb counting, insulin management, the pump, etc.  So I decided that even though I have had three years worth of dealing with my own Diabetes management and even more years dealing with it through other family members including my grandmother, my dad and my brother, I would go.  I would probably know most of the stuff the teacher had to say but who knew, there may always be something to learn.  And there was.

To begin, Type 1 Diabetes is where the pancreas is completely malfunctioning and is no longer producing insulin.  It may also be classified as an autoimmune disorder as often if there is any insulin produced by the pancreas, the body's immune system attacks it like an enemy cell and kills it.  Type 1 is a chronic and lifelong disease where you must rely on man made insulin for the rest of your life.  Whereas Type 2 is where the pancreas is making some insulin but the body is not using it efficiently.  Often Type 2 Diabetics are able to control their disease through diet and exercise but sometimes oral medication is used and usually as Type 2's get older, insulin shots are added to their regimen.  Sometimes that's just a Lantus shot, which is a long-acting insulin and sometimes it's both a short-acting insulin shot (Novolog or Humolog) to be taken with each meal along with the Lantus shot (long-acting).

In Diabetics there is kind of a two way battle going on inside the body.  Do you know which organ in the body produces glucose?  The liver.  That was something new I learned.  The liver, among other things, produces natural glucose in the body which is released into the blood stream.  In a healthy body, one without the Diabetic disease, the pancreas then produces insulin to be absorbed into the cells so that the glucose which is being produced by the liver can also be absorbed into the cells and used for energy.  So in a body with the Diabetic disease, there is the battle being fought with the pancreas and there is a battle being fought with the liver.  So for a Type 1 Diabetic like myself, I take an oral medication that works on suppressing the output of glucose from the liver as well as man made insulin shots to make up for the insulin that my pancreas isn't producing.

So no matter what, every time I eat, I have to take an insulin shot to combat the carbs/sugar that I just consumed because my pancreas is not doing anything inside my body to help out naturally.  So I may take up to 7-8 shots a day including my long-acting Lantus shot as well as my oral medication twice a day to work on suppressing the glucose output of my liver.  Now, with my new insulin pump, shots are done away with!  Even my long-acting shot because with the pump, insulin is continually being pumped into my body.  This is called my basal rate.  Now every time I eat a meal, I will shoot what is called a "bolus" from my pump.  This is like giving myself a shot but I don't have to actually give myself a shot because the pump is already attached to my body.  But every two to three days, depending on where my insulin reservoir is at (the amount of insulin in my pump) I do have to change the pump site and put it somewhere else on my body.  And to do that I insert a needle that is attached to the tubing of the pump into whatever site I choose on my body at the time, then release the needle so only the small insert at the end of the tubing is left inside my body to dispense the insulin.  The tubing can be twisted off for two hours at a time for whatever reason, mainly if I'm taking a shower or going swimming as the pump is not water proof, and must then be hooked back up.

So that is just an overview of the Diabetic disease, what is going on inside my body, and a little on how the pump works.  I get hooked up on my pump next Friday so I'm pretty anxious about it.  I think it's going to change my world.  I know it has helped my brother immensely so I hope it does the same for me.

(The Infusion Set - This is the the needle and tubing parts of my pump) 

(The Insulin Reservoir - This is where I will add the insulin and insert into my pump) 

(My new "wireless" Glucometer - This Glucometer is wireless so that when I take my blood glucose, it sends a signal to my pump and my blood glucose is already in the pump to be used for insulin measurements)

Explore. Dream. Discover.

"Twenty years from now you will be more disappointed by the things that you didn't do than by the ones you did do.  So throw off the bowlines.  Sail away from the safe harbor.  Catch the trade winds in your sails.  Explore.  Dream.  Discover."  ~Mark Twain

This wonderful quote from the brilliant Mark Twain was in my Burn Support News that I get from the Phoenix Society and it couldn't be more true.  I know I can get caught up in the things that I did in my past to either myself or others but like Twain says, twenty years from now that's not what's gonna get me down or disappoint me.  It's gonna be the things that I didn't do, the things I let slip between my fingers, the dreams I didn't chase with my running shoes on.

It's time I stop playing life so safe.  I used to play life with reckless abandon and then my accident happened and I've been safe ever since.  I only get to live once and in the end I will be disappointed if I continue on this journey tied to the safe harbor.  I've got to really get serious about getting my PhD because I know that will be an ultimate sore spot if I don't go for it.  I know I missed it for this coming year so I best be getting prepared for it when it comes around to applying for the year 2013/2014.  I also want to learn a second and third language.  I think it's a pretty wonderful and fantastic thing to be able to understand and speak a language other than your native tongue.  And close to that same goal is being a world traveler.  I have always loved to travel and I think it's most important to see and experience the world and other cultures.  I've thus far been to Japan, Ecuador, and Jamaica that is out of the states and I want to see and experience so much more.  I would LOVE to walk the Camino de Santiago someday.  That would be an ultimately amazing experience.  And I want to go to as many concerts as I can because they simply make me happy.

Those are just a few of the things I want to accomplish in my life other than the big one - finding a career I love.  I feel intimidated by them a little bit because of my age. I feel like I'm too old to be getting started on all of those things but I guess I've got to get that out of my head and strap those running shoes on and go for it.  To catch the wind in my sails and explore, dream and discover all that I can in my life.

Insulin Pump Has Arrived

My Insulin Pump finally arrived yesterday after a little bit of an ordeal to get it here.  First I had to jump through all the necessary insurance hoops but since I had been diagnosed as a Type 1 Diabetic, they made the hoops easier to jump through.  After a few phone calls to get me set up with the pump from Medtronic and CCS, they said the whole process would take about two weeks.  Well three weeks later I still hadn't received a phone call to let me know they had shipped the pump (they said they would call to let me know because I had to be home to sign for it) so I decided to call CCS and ask two things: 1) either they had shipped it and forgot to call me or 2) it hadn't been shipped yet and something was holding it up.  Turns out something was holding it up and that something was my doctor.  CCS told me they were all ready on their end, they were just waiting for my doctor to get them the proper paperwork/bloodwork in.  They told me that sometimes hearing from the patient gets them moving a little better so as soon as I hung up with CCS I immediately phoned my doctor and told them CCS was all ready, just waiting on paperwork from them.  That very afternoon I received a phone call from CCS in which they told me I must have called the doctor because not too long ago they received the paperwork and bloodwork and would be shipping out the pump.  I guess I put a bee in their bonnet and good thing too cause who knows how much longer it would have taken.

So, yesterday UPS came with my pump and I felt relieved that everything had come in to place from getting insurance to approve it and pay for it to the doctors getting the paperwork in and CCS shipping it out and it was finally in my hands.  And my goodness, a lot of stuff came with it.  First there's the pump itself along with it's own accessories like the belt clip and tubing clips.  Then there's the infusion sets, alcohol wipes, the reservoirs (the insulin that goes in the pump), a new meter that links up with the pump and a million test strips as well as about four different instructional/guide books to the pump.

Now on to the next step, which is getting hooked up with the pump educator in my region and meet with her at my doctor's to get fixed up with my pump and learn how to use it.  I gave her a ring yesterday but she's out of town until next Monday so I won't get hooked up until next week.  But at least the first two steps are done.  Two down, one to go.

Coldplay Concert

Well I had an amazing day on April 24th, 2012.  Well, it was a disappointing day that ended with an amazing flair.  My mother and I got tickets to go see the band Coldplay, which we both love immensely, when they went on sale just after Christmas and we'd been looking forward to that night for four months and it finally arrived.  Since I was gonna be in town, my burn doctor wanted to see me for a pre-op so I had an appointment at 2:00 to see him the same day of the concert.  So the morning of April 24th, we headed out for the trek to Portland and headed directly into the hospital to see him.  This is where the disappointing part of the day comes in.  First of all when he saw me, he just goes, "wow.  You look amazing my girl," and that made me smile cause I just love my doctor and when he says stuff like that to me makes me feel all super inside.  But then after a little bit of chit chat, he drops a bomb on me...he's not going to work on my lip.  Reason is he saw how bad my neck has gotten and since it's all connected between my lip and my neck, he doesn't want to do work on my lip just to have my neck fuck it up so he's pushing the lip back for another surgery date.  My heart sank.  I've been waiting for this lip to be worked on and fixed finally for four years now and my hopes really got put up there because he aimed to really finally get it done but hopes were dashed on Tuesday after seeing him.  So he's going to work on my neck again and release contractures around the corners of my mouth.  And he's bringing in my original burn doctor, Dr, Pulito to assist him on this next surgery.

So after that appointment I was feeling irritated and upset because my lip was not going to get done.  Even looking forward to the concert wasn't helping and I was trying hard not to ruin this evening for my mom.  Or myself.  I was still in a mood when we were walking down to the Rose Garden from our hotel and even when we got in our seats and still even when the two support bands played.  But that quickly dissolved when Coldplay took the stage.  When the doors opened to the Garden and they scanned our tickets they handed us all these bracelets that we were supposed to wear during the concert as it was part of the bands act.  And as soon as they took the stage and started their first song everyone's bracelets lit up with twinkly lights.  It was so much fun and so beautiful looking out over the audience seeing all the lights twinkling different colors.  And my God, Coldplay rocked.  Chris Martin, the lead singer has energy to no end and he puts on a performance.  He runs around, jumps up and down, spins.  And they are truly such a gracious band.  I smiled and screamed and sang the whole time.  It had been awhile since I'd been to a concert, four or five years actually, so it felt amazing and good to do something big like that.  For four hours, I kinda forgot my life as it is now and almost felt free of my sorrows.  It was an amazing feeling.  I enjoyed it so much.  What a night.

Clutching The Past Too Tightly

"You can clutch the past so tightly to your chest that it leaves your arms too full to embrace the present."  ~Jan Glidewell

I am reminded of this quote as I was going through some pre-burn pictures of myself to put away in a box and send off to one of my dearest friends.  Once again it was hard going through those pictures.  Damned hard seeing what I used to look like, how happy I was in every picture.  Tears welled up in my eyes until they eventually tipped over my lower lid and streamed down my cheeks, around the corners of my mouth.  It was a quiet cry, a quiet sob.  Gentle heaves rocked my chest and body as I went through each picture, lingering on each one for just a moment or two before putting them away.

I have been clutching the past so tightly to my chest that I haven't been able to fully embrace the present.  I'm hung up on what was and that in turn makes me angry with my present, unable to live my life for each moment.  I'm wasting days, moments of the present because I can't get over the past, both the good and the bad.  But when I look at those pictures I see only what was good in my past, the good memories flooding my mind so fast that it's difficult to keep up in my own head.  I don't know how to let go.  Four years later and I still don't know how to let go.  It's impossible for me to accept what happened and push forward, making the best out of what I have now.  When I think about accepting the accident, it's like solving a complex physics equation.  I look at it like it's an ancient Egyptian language and I can't comprehend the thought of accepting what happened.  I'm wasting my life doing this.

So how does one come to accept a horrible happening in their life?  Something that ruined the way of life that they knew?  I think it helps if they aren't as alone as I am.  Sure, I have my family and my friends, but I don't have my own family, a husband, or even a boyfriend.  I'm on my own, alone, and it proves to be difficult to meet people so I hide away most of the time.  And by hiding away, time passes me by as I clutch to past memories of a happier time.  And before I know it, four years have passed, I've turned 30 years old, and I don't have anything to show for it except 32 surgeries.

I continue to pack up my past so that maybe I may find myself free to embrace the present....