Saturday, November 27, 2010

It Is the Struggle That Gives It Its Beauty

I get a lot of inspirational quotes from books that I read and right now I'm in the middle of a memoir by Jeannette Walls called The Glass Castle. And this quote was particularly striking to me and you'll see why. There's a small conversation between Jeannette and her mother about a Joshua Tree. Now if you don't know what a Joshua tree is, it's one of those trees that from the time it was a tiny sapling, it has been so beaten down by the whipping wind that, rather than trying to grow skyward, it had grown in the direction that the wind pushed it. So it exists now in a state of permanent state of "windblowness," leaning over so far that it seems ready to topple, though its roots hold it firmly in place.

So Jeannette, as a little girl, finds another tiny Joshua tree sapling growing not too far from the old Joshua tree. She says she wants to dig it up and replant it near their house so she could protect it from the wind and water everyday so that it could grow nice and tall and straight. Her mother frowned at her saying, "You'd be destroying what makes it special," she said. "It's the Joshua tree's struggle that gives it its beauty."

It's the struggle that gives it it's beauty...I thought that was a beautiful way of saying it. Perhaps it is my struggle that will give me my beauty again. For I struggled to stay alive those critical first hours and I continue to struggle through every surgery, every recovery and damn, just everyday life. I so long to be beautiful again somehow and maybe this is the way that I will get it back is by showing and sharing with others my struggle. I wish I was beautiful in the classic way but I'm afraid I may never be so beautiful again as I once was. But perhaps my struggle in this windblown life I have come to know now is going to be my beauty now.

Thursday, November 25, 2010

My Small Yet Thankful 2010 Thanksgiving

My Thanksgiving Day started out wonderfully by sleeping in and then once up, warmed up with a nice cup of hot, peppermint coffee and the watching of the Macy's Day Parade in New York, where I once lived. It definitely made me miss New York in many ways. As the day progressed Father read while I started in on the apple cider and cross stitched. Mother also began to make some peperations for the small feast we were to have (it was just the three of us this year).

(Mother beginning the makings of a great, yet small, feast)

(the official Turkey Breast cooked and ready to eat)

There are many things I'm thankful for this Thanksgiving but I'd really like to focus on a couple.

First and foremost is my mother and caretaker. She was always there for me before my accident and she has stepped up to the plate even more so since my accident and not only has been my mother, and an awesome mother at that, but my caretaker as well. She is the one that showers me, cleans me, dresses my wounds and dresses me, makes my food and most of all, loves me unconditionally, even during my worst of days. I love you momma.

I'm also thankful for the wonderful and amazing friends I have, some who were there before the accident and those that I have acquired since my accident. You all know who you are. You have loved me through thick and thin, through beauty and scars. You have truly shown me what friendship is and I'm so thankful for that for now, since my accident, I know what a real, true friend is. I love you, my friends.

And thirdly, I'm thankful for the advances my doctors have made on me. Thanks to them, I was able to reach up to the cupboard with my right arm (the one that they just recently released) and grab dinner plates. I have not been able to do that since my accident, 2.5 years ago. I am also thankful for the great advances in my neck. I once was at a mere 5cm neck extension and now because of my doctors great hands I am now up to 16cm neck extension. A normal person's neck extension is 17 cm!! So now I am able to look up to the ceiling, to the sky and left and right, around in a circle. It's amazing what has been done on that operating table under the hands of my wonderful doctor and his team. So thank you Dr. Vangelisti.

It has been a long struggle but I am here for another holiday season. It could have been a second holiday season without me here on this earth. But I am here and for what reason I am not sure yet. My life was spared and I have yet to find my purpose.

Tuesday, November 23, 2010

The First 2010 Winter Downpour

Can I just say I LOVE THIS SEASON!!! AND I LOVE THE SNOW! It just "smells" like the holiday season even though snow doesn't smell, but ya know what I mean? This is a picture of our first 2010 winter downpour - about 4 inches - and let me tell you it is COLD outside too! But I love it.

Unfortunately I must admit that I am and am not at the same time one of those people who gets into the Christmas season after Halloween. When I say I am and am not I mean I do get into Christmas in terms of decorating with Christmas decorations around the house and sometimes even listening to Christmas music BUT I also get into Thanksgiving too. The only reason I start decorating in Christmas right after Halloween is because I don't have any Thanksgiving decorations! So, I just get right into Christmas.

But I am NOT one of those Black Friday Shoppers where I get up at 3am just to go shopping. I understand that yes, you probably do get incredible deals but I just can't deal with all the insane shoppers and I think it's a little insane to get up at 3am to go get a good deal anyway. But I suppose I also understand if you have a lot of people to buy for so you need the big deals. But I don't. So I slowly buy presents as the season rolls around.

Hot Cocoa and peppermint brittle (for those of you who don't know what that is it's like peanut brittle only peppermint) are also in order for this beginning downpour and beginning of this fun holiday season!!! YAY!!!

Thursday, November 18, 2010

Been Awhile but Another 2 Surgeries Under My Belt

Well I go in for 1 surgery and it turns into 2 and a week long stay turns into about a week 1/2 long stay. All the precursors to surgery number 25 were not looking too good. Our hotel was overbooked so they sent us over to another (not so nice) hotel and my blood sugars were not doing well - too high, much, much too high. Then as we were going up the elevator to the Day Surgery Area I get a call from them asking where I am. So I tell them and they say, "Ok we'll see you soon." Well it turns out my surgery time got moved up quite a bit from 9:30 to 8:15am so my check in time was actually 6:15 so they were wondering where I was. BUT they NEVER told me they changed the surgery time!!! So we were all a fluster getting checked in in a hurry. And of course they couldn't get an IV in so they had to take me into surgery with the anesthetist and give me laughing gas to put me under and then get an IV in me. Well turns out they couldn't get one in anywhere except for my foot and that's no good for a diabetic but they did it anyway.

So the Doc got the tissue expander advanced and put in another tissue expander in my neck but when he went to go work on my right axilla (right armpit) he opened it up to a MASSIVE wound of thick and tangled and nasty scar tissue along with some fatty tissue as I haven't been able to exactly do any exercising on that arm with the limited mobility I had in it. So he decided to just do the one arm and put cadaver skin on it for a little while and go in for a second surgery and replace it with autograft, which is my own skin.

So my 25 surgery did not go as well as had hoped and led to a 26th surgery sooner than planned. Surgery 26 came along on Friday and went well. Fortunately this time, they had successfully gotten a PICC line in me on thursday so no IV was needed thankfully because of the PICC line. For those of you who may be wondering, "what is a PICC line?" A PICC line is a Peripherally Inserted Central Catheter. It is a long, slender and flexible tube that is inserted into peripheral vein (usually the upper arm) and then advanced until the tip of the line "terminates" into a large vein in the chest near the heart allowing for intravenous access. A PICC line can stay in the body for up to 7 days, sometimes longer whereas an IV usually needs to be changed every 3 days and for someone like myself where it is nearly impossible to get in an IV and whose IV's often "blow", a PICC line is most advantageous.

I came out of surgery #26 with flying colors but unfortunately in a cast/splint like thing on my right arm so I had to do everything one handed...that was more than a little annoying. Wednesday came around and I finally got my dressings taken down and was discharged that very day. But boy let me tell you I was wiping tears from my face as they took down my dressings because it hurt so bad despite how gentle they were being. Taking down the donor dressings and all the staples were blinding my eyes with tears. Then they had to redress me so I could go home, but that didn't hurt as bad.

So we made it over the over the mountains with dry roads. Now I'm trying to adjust to being back at home. Those of you who have been in the hospital for awhile and finally get to come home know that it can be kinda hard to readjust to being back home.

Friday, November 5, 2010

A Heightened Level of Anxiety

I love peppermint coffee in the Fall/Winter. It just starts out my morning right and sets the mood for a wonderful afternoon when you have a cup later in the day. I am having a cup right now and it makes me feel all cozy inside after the busy morning I had.

We went to go get my blood drawn...AGAIN!! And of course they resorted to the knuckle vein that hurts like hell. But after poking me four times that was their last and only option since it usually is a good one for giving blood. Then we had to go to the church and drop off my crafts for the bazaar. THEN we went to the college to go pay for my online class only to find out that they are not accepting payments for winter term until after December 11th. So we went and tried to get my student ID....same thing. So that was a waste of time. Should have called.

Well, it's 3 days until my 25th surgery and my anxiety level is a little higher than normal for several of the same old reasons but one reason is new. And that is my father is going to be there instead of my mother. Now my mother has been there for EVERY surgery and she is my caretaker, I'm very close to my mother. My father, on the other hand, hasn't been there for a surgery in a LOOOOONG time. So I'm going to be missing my mother's support very much. Not that I don't love my father, but my mother is not just my mother, she has become my caretaker as well and knows how to go through the surgery process with me. My father does not. So this has taken my anxiety to a whole new level that I do not like.

So my dad is only gonna be able to stay until Wednesday and then he leaves to go back to work. My mother will then come back on the weekend and take me home. So that leaves two days where I'm all by myself, which I really don't like when I'm in the hospital. You have no idea how long a day it is when you're all by yourself. It is such a long day, so lonely, and so boring. So I am not looking forward to this hospital stay, not that I ever do, but this one more than any other.

Thursday, November 4, 2010

New Tooth, New Hair, and Other Random Things

Well if you didn't know, I chipped one of my front teeth last week and got it fixed on monday. Thanks goodness for OHP covering dental work. And then today I got my hair done. I went crazy again and took out the red and replaced it with blue so I now have purple and blue in my hair. It looks really good. Emily always does a fabulous job. I wanted to get it done before I went in to surgery again.

And I have also officially registered for an online class at EOU. I can't believe I'm actually doing this. I'm excited yet nervous all at the same time. Deep breaths....

Well, Halloween went well. We had nearly 50 trick-or-treaters, which is pretty good for my neighborhood. Here are three of my favorite outfits:

The middle one is the Larkin kids, (from left to right: Riley, Aiden, and Morgan). They came over to my house just to see me. It was really sweet. I loved of course the the football players, one being a beaver and the other a duck. And of course, the little babe was just adorable. So we had a good time handing out candy and taking pictures.

My good day that I wrote about came to a screeching halt this week. I think because my high anxiety is kicking in for surgery. I'm not too excited about this one. My mom is not going to be there. My dad is taking me this time and it's just not gonna be the same with my mom not there. This is causing a lot more anxiety than I usually have. My dad hasn't been to a surgery in MONTHS.

I'm all ready for the bazaar. I have to go to the church tonight and hand in what I made. I didn't get done nearly everything I wanted to get done but oh well. At least I contributed right?

Well that's all for today.

Saturday, October 30, 2010

Finally, A Good Day

I finally had a great day after a series of down and out, depressing and painful days. It started with a wonderful cup of coffee which led to coffee out at Denny's for breakfast followed by a quick look at the Presbyterian Bazaar and ended our outing at Wal-Mart where we did some errand shopping. We then came home and started in on carving pumpkins. This year we went with simple, classic faces. Nothing really fancy.

(Dad cleaning out the pumpkins)

(Me drawing on one of the pumpkin faces. Nice tissue expander on my back eh?)

(Mom also drawing on face on the pumpkins)

(Dad, the Master Carver, carving out our designs)

(Our finished products for Halloween 2010!)

(Silly Daddy)

After the carving of the pumpkins was done, we got ourselves ready for the Oregon vs. USC game. Dad and I wore matching Oregon Ducks pajama pants and we ate finger foods for dinner while we watched the game. And the Ducks won!

And now here I am, writing at the end of a very wonderful and best of all, pain free day. I have also had a switch in medications to hopefully help my restlessness and help me focus and concentrate better. And so far I think it is helping! I saw my therapist and told her I felt like I had ADD or ADHD and then I saw my psychiatrist who handles my medications and told him of my new symptoms and he took me off one medication and started me on a different one that I think is actually helping. It may be too early to tell yet but I certainly have felt better the past two days.

Tomorrow is Halloween, my second favorite holiday (Christmas being my favorite). It is the beginning of the holiday season. I love this time of year.

Wednesday, October 27, 2010

A Little Yet Big Message from Apolo

I was watching the Today Show this morning (as I do every morning) and Apolo Ohno was on as a guest with his new book, "Zero Regrets." And the reason I'm writing about this this morning is because of two things he said. Really his entire interview was inspiring but two things he said really reached right through to my heart. He Said, "It's about living with the cards you were dealt," and "It's not how you start, it's how you finish."

Those two quotes are really important to me and I think to many of you who are reading as well because for me, at least, I have been so stuck on my past that I have been unable to move forward and live for my present, for my future. I've been stuck on how I "started," instead of focusing on how I will "finish." And I've been stuck on how I started, on my past, because I didn't do everything right. I have regrets from my past and I can't get past them. But I need to retrain my mind, and my heart, to move on from that. It's become an old excuse for not doing all that I can NOW. It's an old excuse for not picking myself up and doing what I need to do to "finish" with no regrets, knowing that I did everything to make the most and the best of this second chance I've been given.

And as for "living the life you were dealt" I also have a hard time dealing (no pun intended) with the cards I have been dealt in my life. I ask the question "why" everyday I wake up, every time I look in the mirror, every time I'm invited to a gathering where there will be a lot of people, every time I get a stare, every time I go into surgery, and every time I'm in pain. Instead I curse God. I'm going about this all wrong. I need to stop asking "why," and just accept that these are the cards I've been dealt with in life. That perhaps these cards I've been dealt are a blessing, rather than cursing God for them for my eyes have been opened to what is most important in life. The cards I was dealt put me at the bottom of life and because of the "deal," I really have nowhere to go but up, if I can learn to play these cards right. And I think I am learning to play them right. I am looking into going back to school and I am slowly getting out more and being more confident when I'm out with people. It's unfortunate that it took a terrible accident for me to gain sight again of where I want to go with my life, but these are my cards, MY cards, and I must learn how to live life with those cards.

Thank you, Apolo, for inspiring me to live my best for at least today and, hopefully, keep those words in the forefront of my mind so I can live my best for the rest of my life too.

Monday, October 25, 2010

Making A Second Chance Count

I got one of those "forwarded" emails from my mother the other day that I usually don't pay attention to no matter who they're from but for some reason I opened this one and I'm so glad I did because it had a wonderful message inside:

Life is too short to wake up with regrets.
Love the people who treat you right.
Forget about the ones who don't.
Believe everything happens for a reason.
If you get a second chance, grab it with both hands.
If it changes your life, let it.
Nobody said life would be easy.
They just promised it would be worth it.

I have written a many posts about not taking things, even the simplest of things, for granted and I have posted about how your life can change in a split second so life your life to the fullest and love with all your heart those that you love. I've written about how I've been given a second chance and how my life has not been easy since my accident. But I have never talked about how life, even mine, is worth it no matter how hard it is. I love the lines, "If you get a second chance, grab it with both hands. If it changes your life, let it."

I have been given a second chance at life, but I have not grabbed it with both hands because I am afraid I have nothing to grab on to. I feel like I've lost everything good that I had in my life when really the most important things that I had in my life i still have, which is my family and my friends. And in the friends department, I have actually gained. But besides my family and friends, what is it in this second chance I've been given that I can grab with both hands? A career? That's a big iffy and very far away right now. Love? forget it. Money? forget that too and that's only important to me so I can one day take care of my parents as they have taken care of me. Beauty? I lost that in the fire. God or Faith? I question even the existence of a higher being right now. So I ask again, what is it in this second chance that I can grab with both hands? I feel like I'm reaching and reaching but grasping nothing but air.

"Nobody said life would be easy. They just said it would be worth it." Life is not easy for me, that's for sure. But I'm still trying to figure out how my accident still made my life worth it. What good came out of it other than the better friends I have? I listed several things in the paragraph above that I don't have now because of the fire. I lost so much in that fire. So how is life still worth it? I'm trying hard to rebuild my life but I feel like I'm not getting anywhere. The last 2 1/2 years of my life have been surgery after surgery and then in constant recovery. Despite the great advances in my reconstruction, I feel like I'm in a stationary position with no energy to move my feet and do something great with my life.

I want to make the best out of this second chance I've been given. So? What do I do? I'm looking into going back to school because I want to finish my psychology degree and because I love learning and I feel like my brain has turned into mush. I need to revive it. So at least I'm making an effort there. But I live my days inside the house, and usually in some state of depression. What can I do with my daily life to cheer up? To make life worth it? To make this second chance count? Because I've been given one and I must live it better than I did the first chance. I must not repeat my mistakes. I must aim for an unbound and free life full of joy and love and opportunities. I will not allow myself to get cornered again in a life I didn't enjoy. I must promise myself that I won't stop reaching until I finally am able to grab onto my life with both hands and live it. There may not be another chance for me. This is it. GRAB ON AND LIVE IT!

Friday, October 22, 2010

"It'll Be All Right Again, I'm Ok"

"It'll be all right again, I'm ok."

I was inspired by those seven simple words, sung by the musical group "Sugarland," to write this morning. Will it ever be all right again? Will I ever be ok? I like to fantasize that those words will ring true in my life one day. But I don't think it'll just be all right again by itself. I have to be proactive in making it all right again. it won't just be so by itself. Nothing can be so by itself. You must always be proactive for things to happen in your life. Unless you're bloody rich, things you want in life won't just come to you such as your career and even your love life.

However, sometimes, things go wrong in your life and make it even harder to achieve such things. That's where I'm at right now. Something terrible has happened in my life and to my body and even damaged my heart to where I have to learn to pick myself up and stop thinking the way that I do about my life. I must rewire my brain to think, "it'll be all right again, I'm ok." I must be an electrician of my own brain and heart. But I feel like such damaged goods that rewiring is impossible. How do I become proactive in my life like I was my first couple of years in New York City? I worked so hard those first couple of years. But now I fear I must work even harder because of my circumstances. I know I have taken the first couple steps in going back to school but paying for it is holding me back because I don't want another loan. And I'm scared of taking those steps to getting my life back. When you haven't had a life in 2 1/2 years it is exciting to get a life back but it is also scary because you are finally picking up the pieces in your life and putting them back together, like a puzzle that has been torn apart by God.

It's scary to think what that puzzle of your life is going to look like now that the pieces have changed. Because the pieces have changed, the shape and colors of the puzzle of my life have changed. Even the ultimate picture has changed and I don't know what that picture is going to look like. I don't think anyone really knowns what the picture of their puzzle is ultimately going to look like because it is constantly changing, but, for most people, it is constantly changing in a positive direction. The puzzle of my life was torn apart and changed in a negative way. I was burned. My life was burned. But I must learn to be the electrician of my own mind and rewire it to think positively, to think "it'll be all right again, I'm ok." And once I can do that, I can pick up the pieces of my broken puzzle with confidence and bravery and not be afraid of what I will see as I put piece by piece together.

It'll be all right again, I'm ok.

Wednesday, October 20, 2010

Grab the Reins of Change and Enjoy the Ride

Today I took my second step in getting my psychology degree by going to meet with a psychology professor about what exactly it is that I need to do. The psychology requirements have changed a bit but seeing as how I've already done everything that was required of me when I graduated they are not going to make me do the additional requirements. So what I need to graduate is 36 of any credits. We also discussed doing a practicum in the Spring (I'm planning on returning to school in the winter term). I plan on doing my credits online and i plan on doing this very slowly as I have to travel to doctor appointments and surgeries all the time. So only a class or two at a time.

Marie asked me if I knew what I wanted to do with my psychology. Good question. What do I want to do? There are two areas that I am interested in - forensic psychology and dealing with trauma patients. Now I know what you're thinking...GO WITH TRAUMA PATIENTS! That is also screaming in my head too. Not to toot my own horn but I would be rather excellent at dealing with trauma victims being as I've been through a terrible trauma myself and have first hand experience. I really think I could help trauma victims/survivors.

So is this where I'm destined? I still can't help but think about my acting. I know one of my friends, who I have copied her email on here before, would tell me to go with the change. I always thought of change as a good thing. In fact, I loved change. But this kind of change is pretty big and life-changing, if you will, and I'm not sure I am ready to go forth with it. But the more I think about graduating with a SECOND degree the more excited I get. I need to let that excitement soak through me like a sponge and flow with the change that it brings. I shouldn't be afraid of it because that only seizes my body with anxiety like holding on to an electrical wire, unable to let go. Change is what you make of it. And when it happens you must make the best of it. You must take charge of it instead of letting it take charge of you. For when you let change take charge of you, that's when fear and anxiety set in and seize you like a prisoner. I am slowly learning to flow with the change and take charge of it. Rule it. But I am only slowly learning because I am still holding onto the past. I didn't do all that I could with the opportunities I had available to me and I curse myself everyday for not doing all that I could. I became a bum. And I am so angry at myself for becoming such a bum. So because of that it is very hard for me to take charge f the change that has happened in my life because i'm holding onto the "what if's." "What if's" are a poison that kill you slowly. And the only antidote is to accept what has become your present, or in other words, accept the change that has become your present and use that change to shape a future that will not repeat your past.

So what is the change that has become of my life? I was in a horrific accident that forever changed my life in ways many people will never understand. I am changed physically and emotionally and my career path may be changed. I still dream of being an entertainer but I have chosen to accept my reality and the change it has brought with it by going back to school to finish a degree that I can work with despite the change in my physical attributes. I dream of the day that I can let go of the past but yet I am afraid of that day. For what will I have to hang on to then? I will then be forced to grab onto change like a runaway horse and pull myself up onto it. Only I must grab the reins and resist the urge to stop it but to let it run, run as far as it's heart can go and enjoy the ride.

Friday, October 15, 2010

At Least 10 More Years

I had another doctor appointment yesterday in Portland for another expansion. But we talked a lot about future reconstruction plans and he really looked me over, the wheels turning in that brilliant surgical mind of his.

As you can probably see in the picture in my last post, I have some nasty bunch of scars underneath my chin. He suspects there is a contracture in those scars pulling my bottom lip. He has tried a graft twice on it and it just keeps pulling. The release on my neck should have released it but it didn't so he's suspects it is those scars underneath my chin. So he has decided to put in a tissue expander in the lower part of my neck to expand that and then advance it (pull and stretch it to where he wants to put it) up under my chin and around my mouth where I've developed some other nasty thick scars. Now hopefully by excising (cutting off) those scars under my chin and advancing the new expanded skin my lip should pop back into place finally. That is the theory. But boy is it going to suck having a tissue expander in my neck!!! The other problem with my mouth is my upper lip. It is being pulled inward helping to make my lower lip more pronounced but that is going to be an easy fix he said. He's just going to put fat injections in it and puff it out. Hey, you know something good might come out of all this...i just might get Angelina Jolie lips! LOL!!!

He also talked about, down the road, putting tissue expanders in the parts of my arms that aren't burned and then excising the scars on my arms and advancing the good unburned skin around so I will no longer have scars on my arms anymore! You know what that means? I'll be more confident in wearing short sleeves and tank tops AND most of all, BEING IN THE SUN AGAIN!!!

So on November 8th, Dr. McDreamy will be advancing the tissue expander I have expanded now in my right scapula around to release the contracture in the right side of my neck, doing a z-plasty on the left side of my neck, putting in a tissue expander in the front of my neck AND releasing the contractures in BOTH arms. Five different operations being done in on swoop. I am not going to be a happy camper with the pain. I'll be in the hospital for at least seven days again.

Doctor Vangelisti also kinda laid it down on me his projected time for how long I will be going through surgeries. I will be going through reconstruction for at least 10 more years. Yup, that means I'll be nearly 40 if not more than that and still going through reconstructive surgery. My jaw dropped inside my head. I can only hope that i'll be able to take care of myself at some point in that time frame to where I can get out on my own and live my own life again. As much as I love my parents and have immense appreciation for what they have sacrificed for me to take care of me, I will die if I'm still at home for all that time. 10 FUCKING YEARS!!!!!!!!!!!!!!!!! It better all be worth it in the end. 10 YEARS!!!!!! I'm gonna go cry now....

Wednesday, October 13, 2010

1cm Away From Normal!!!!

We traveled to Portland today for two doctor appointments. One was today, this afternoon, with one of my OT's (occupational therapists) from the burn center to do some measurements on my neck mobility. And it was GREAT news! My neck extension was 16cm (a normal neck extension is 17 cm)!!!!! And the degrees to which I could rotate my neck left and right was: to the left, 75 degrees and to the right, 80 degrees!! My last measurements, which were BEFORE this last neck surgery were: neck extension - 14 cm, rotation to the left and right both - 60 degrees. Yay!!! I'm 1cm away from having a normal neck extension!

My OT, Helen, and I took a look at where I was in July of '09 when we started tracking all these measurements I was as follows: neck extension 5 cm!!!!!, rotation to the left and right both - 30 degrees! Can you believe that?! My chin was completely captured. It was basically tucked to my chest. I want to show you pictures of it so bad but I'm sooo scared. It's pretty shocking. I'll show you some day when i'm feeling really brave. I'm actually feeling pretty confident right now and probably would put it on this post but I'm on my mom's computer and she doesn't have the photos. Maybe I'll come back later and add them :)

Anyway, it was a good news day. Tomorrow, however, will not be so good. Tomorrow will be a day full of immense pain. I have to get my last expansion done before surgery and these expansions hurt. I'm also gonna ask Dr. V. a couple questions about his future plans for me - like some dermal abrasion for the scars on my face. Sand those puppies down! Get rid of them! We'll see what he has to say....until my next post!

Monday, October 11, 2010

Rock the Socks off of the World

You will forget your misery; you will remember it as waters that have passed away. (Job 11:16)

Yesterday I wrote a post about what I have done with my life. I was having a bad, BAD day. I cried nearly all day. But later in the afternoon, I received an email from a follower and friend of mine that gave me conflicting feelings. I agree with her in many ways but in other ways, I don't think she fully understands the sufferings of a burn survivor. But I do fully agree with her that I am not the only person in the world who has suffered or who is suffering. I know that. But there is something different about the suffering and recovery of a burn survivor. I'm not saying I'm special in any way. But I would like to anonymously share her letter with you because it did impact me.

"As a follower of your blog, I want to both hold you to comfort you and knock some sense into you to help you focus better. Your life is not over. And your dreams do not have to be destroyed. I know I left a comment on one of your previous blogs that encouraged you to change your perception…I will continue to say that to you. It is time to let go of the dreams that are holding you back, and start dreaming in the structure of now.
While faith in a deity is great, you must always remember that our deities (no matter what religion) are in EVERYTHING…that means in YOU, in the wind that blows through the trees, in the grass that grows in your yard, in the water that you consume. LIFE is in everything, including YOU.
.....It was not until I realized that it wasn’t about finding blame, that it was about accepting change. It was about finding a way to use that change to rock the socks off of the world around me and to keep honoring the universe for having blessed me with the growing experience it gave me.
Here is where we are different, and I humbly accept this. I have never been dependent on people as you have to be in this struggle. I cannot imagine the frustration you feel even as you describe it in your blogs. The patience you must be learning can only be wondered at. It is amazing to me that you do even the few things that you do, that you are finally going out in public, that you are having coffee and dinners with friends. How amazing that there are people who love you enough to have waited for you to come out of your coma, to be by your side as you face surgery after surgery. How amazing that there is a following of people who want to know more about your life and your daily battles. And how awesome of you to share them.
I hope for you that you will learn sooner rather than later that it is not about the glory we receive for things accomplished that makes life worthwhile. It is not about the awards we could win. There is so much more to life than making it out better than the people around us. I’m afraid that the mentality of “doing better than this” is largely an Eastern Oregon mentality, and it pangs me to think that you are falling into it. Growing up in La Grande causes most kids to say “I’m better than this. I deserve better than this. I can do better than the assholes at school who thought they were better than me.” The truth about this behavior is that, sure, it could happen. But WHY does it HAVE to? Why can’t we be content with trying? Why do we have to get so angry with ourselves and try to place blame on others when we don’t quite make it out better than or even on par with the rest of our classmates? It’s a nasty and hard lesson to learn, but when we finally realize that what we have is as amazing as our perception allows it to be, then we win. This stupid game of having to prove ourselves b/c we made childish promises in high school will end, and we begin living.....
....Sarah – I don’t understand your daily physical struggle, but I understand emotional turmoil. I understand suicidal tendencies, I understand fear, and I understand anger all too well. I’ve lived all of those struggles. I am hopeful for you that your perception will change. That you will see how amazing and beautiful you are. The human beings that focus on the outward appearance, the human beings that feel only pity for you – well shame on them! What misguided, undereducated ignoramuses. Sarah, in all of your recent photos, not only are you able to lift your chin, but the sparkle is coming back into your eyes. There is evidence that you KNOW you have something worth living for. Don’t let broken promises to yourself bind all that is good and hide it away deep inside you. Continue to let yourself glow, because you do damnit! You glow! I don’t remember anything about your physical being before the accident more than I remember your eyes and your voice. You still have those eyes. Those “Lilly hazel eyes” if you will. And they speak volumes.
I would watch you acting any day because I am sure you’ve not forgotten your training. Damn, because of your charisma, I’d watch you sit and read a book aloud. It is awesome that you share your story…I pray that one day, you will be able to focus on the amazingness that is you and the beauty that you possess.
Whoever told you that you shouldn’t ask “why” could be correct. However, simply changing the form of the question doesn’t necessarily change the content. “What” might not be the better question either. Maybe instead of asking questions you could begin, like a scientist, with a theory.
“I hypothesize that as I heal, my fears will disappear.”
It’s easier to watch and make (or even let) things happen that way.
If I could wish anything for you, Sarah, it would be that you are able to let go of whatever you are afraid to speak about. Your comments sound sincere, and as I read them, I can’t help but wonder what you are hiding—that you are afraid to share.
It’s not necessarily for the world or blog followers to know what you are afraid of saying. That’s fine, I just hope that you have someone you can go to and not feel judged by, because the pain in your heart and mind is what tugs at me. I wish I had answers for you lovely lady. Please keep sharing as that is the only way some of us have of knowing how you are fairing each day.
And lastly, I hope that I can always be one of your supporters and followers."

The woman who wrote this email is an amazing woman for what she has overcome in her life so she does speak from some experience. I adore her and I highly value her opinion. I love it when she writes me letters.

However, she writes that I am still hiding something, afraid to speak about something. I don't think I'm afraid to write anything or am hiding anything. Do you? I have cursed myself and I have cursed God over and over again. But am I still hiding something?

"Don’t let broken promises to yourself bind all that is good and hide it away deep inside you," she writes. I am afraid that she is right there. I have let broken promises to myself bind all that is good. I am stuck on my past because I didn't do all that I could with it. So now I'm left with those "broken promises" that are the very vain of my existence everyday. I think of them everyday. They are like the black plague preventing my ability to move forward.

"It was not until I realized that it wasn’t about finding blame, that it was about accepting change. It was about finding a way to use that change to rock the socks off of the world around me and to keep honoring the universe for having blessed me with the growing experience it gave me," she writes again, hitting the nail right on the head for me. I wrote about change in a previous blog post and here she reminds me of it again. I want to blame God for what he has done to me when what I really need to do is accept the change, find a way to use it and "rock the socks off of the world" with it. But what do I have to offer the world now? I wanted to offer the world the greatest entertainment they'd ever seen whether on Broadway or on film but in the great chances that I can no longer do that, what is it that I can offer now? Or maybe I should put it this way: what is it that I can offer now that I will love just as much?

Well thank you, my friend, for writing such an inspiring and through-provoking letter. You are an amazing human being and I'm so proud of you for overcoming your struggles. You have inspired me to accept this change in my life and as you put it so wonderfully use it to "rock the socks off of the world."

What Have I Done With My Life?

I am 28 years old, 29 in January, and am having a hard time realizing I really haven't accomplished anything in my life. What have I done? Moved to New York City? No. That's nothing. I remember when I was in highschool I made a promise to my health teacher that by my 10 year reunion I would have made my first blockbuster movie. Well that never came to pass because I had my accident and it destroyed everything in my world. So I am now 28 going on 29 in 3 months and I haven't done anything. In fact, I've had to practically start over. I had to relearn how to walk, how to climb stairs. I'm living at home again. When will I get back on my feet and start living my life again? When will I finally be able to leave my parents home and take care of myself? I have this crushing weight of a feeling on me that I will still be here when I'm 30, even 31. Do you know what that does to your psyche and emotions?

So many of my friends are lawyers or doctors or even has won a Rocky Mountain Emmy. And what am I? A burn survivor whose about to go through her 25th surgery and is living at home with her parents. A burn survivor who dedicates her days to cross stitching and reading. How accomplished is that? I had such a bright future ahead of me and it all came crashing down on me. I've done nothing in my life and this bothers me a great deal. I have such a long ways to go yet. What will I be able to bring to the table now that I'm a burn survivor? I feel like I hold no cards anymore.

Every single day is a struggle for me. It seems like I'm either in surgery or in recovery. I'm barely coming out of recovery for this last surgery and I'm going right back in to another surgery and it's going to be a doozy. The doctor is releasing both sides of my neck again and releasing BOTH arms all at the same time. I'm not going to be a happy camper. And I'll be back in serious recovery. I feel like I'm never taking a step ahead in my life. I know I'm making advances on my body with all these surgeries, but I'm not going anywhere in life as compared to many of my friends. What a horrible feeling that is. I feel like a loser.

Why did you do this to me God? I still don't understand! What do you want me to do? I'm so confused and lost. I HATE you for what you have done to me and for destroying my life! I have to admit, there are days where I wish I had not survived and that is a terrible thought to have. But how much longer must I suffer? Have you forgotten me? I'm tired of the sorrow I carry in my heart everyday. I'm so very tired of it.

"How long, O Lord? Will you forget me forever? How long will you hide your face from me? How long must I wrestle with my thoughts and everyday have sorrow in my heart?"
~Psalm 13: 1-2

Thursday, October 7, 2010

My "Anam Cara" Corrie

I have a REAL, TRUE BEST FRIEND in all the sense and she wrote me an email this morning that really touched me and of course, made me cry. But she said some very profound things that I wanted to share with you. Her name is Corrie and we have been best friends for 22 years, since the 1st grade. We lost touch for awhile, however, and unfortunately, but we are making up for it now and I hope for the rest of our lives. She is a beautiful human being inside and out and you'll see that in the words she wrote to me. Here is her email:

"SB, for some reason, I've not been able to post comments on your blog but I just caught myself up on it and I wanted to tell you that I am so proud of you. You are doing an amazing job and your words are so healthy. Even the angry ones. I think you are absolutely doing the right thing by finishing your Psychology degree. And even by considering the burn nursing. Because what you have, my dear, is a voice. You don't pretend like everyday is easy and you are humming your way through the pain. You are real. You thank the Lord and you question him. Both are very real feelings that you could absolutely share with others that are struggling with physical pain as well as mental/emotional pain. Whether you are counseling someone, or physically helping them with their injuries, you would be perfect. And this doesn't mean that you'll never get back on that stage again. Who says you can't have two dreams??? :) Trust me, there are days when I wonder why in the heck I joined the military. It makes me move away from family and friends, and I don't get to express myself creatively. (one of the problems with a military of individuals) My true passion is with decorating and with fitness. I've gained ten pounds since being in Seattle because my job makes it hard to get in a routine. But I can only take one day at a time and try to do my job well and proudly. And then do what I can, when I can with my other dreams. You've got a long life ahead of you sweetie. Don't give up on any of your dreams. I love you more than anything and can't wait to see you again. I pray that God eases your pain each day and you feel the love that is pouring towards you from all of your friends, family, and followers. If nothing else helps you today...I hope knowing that you are my ultimate inspiration does. You help me each and every day, my friend. Thank you.

Love, Corrie (Your Besty)"

Both her and I wear rings that read, "Anam Cara" which means, "soul friend." She is truly my soul friend and her email this morning really helped me get through my day today because i knew it was gonna be a hard one after the night i had with no sleep whatsoever. She is truly an amazing human being and I'm so lucky to just even know her, let alone be her best friend. She says that I am an inspiration to her and that still brings tears to my eyes because that is my aim with telling you all my hurts, pains, anger, and sometimes the happy times in my life exposed here on this blog. But she inspires me in return. That is one of the reasons why we make such a good pair: We inspire each other. I hope I inspire you other readers and followers as well otherwise I'm not achieving my goal with this blog.

Corrie, thank you for that beautiful email this morning. It got me through my day and it made me realize that it may be possible for me to hold on to my acting dream. I love you Corrie and I miss you everyday.

Wednesday, October 6, 2010

A Split Second is all it Takes

I've had some hard days since my last expansion last Thursday and it got me to thinking today after I made a comment on a friend's FB page. Please, my friends, readers, and devoted followers, read this and take it to heart and live what I tell you:

Live your life to it's very best everyday of your life for your life can change in a split second and your world can come tumbling down on you. Such is what happened to me. Unfortunately, I did not live my life to it's very best everyday before my accident so it's hard for me to be at peace with my new life because I can't look back on my life and say, I did the best I could, I tried everyday, and I lived to the fullest everyday. I took advantage of a lot of things. I took advantage of living in a great city like New York after a couple years of living there. I got used to it and stopped taking advantage of this great city that had so much to do in it. I began to hate my life because I didn't know where I was going. I had lost sight of my goals, my dreams. I began just working my job and going to auditions less and less with each passing day. I began going to see Broadway shows less and less and stayed home more and more. I slept a lot, I became depressed. Very depressed. And that's why I came home; was to get my priorities in order and turn my life around but I never made it. My accident happened before I was able to make those changes and really re-evaluate my life.

My life changed in a split second. I went into a coma for a month and when I awoke, my life was changed forever. Everything I knew about my life would never be the same. I cannot describe to you the first time I saw myself in the mirror. For the longest time, they covered up the mirrors in the bathroom so that I wouldn't have such a shock without being prepared. But when the time finally came for me to face the burn it was devastating. They took down the paper that was covering the mirror and I kept my eyes to the floor for what seems like forever before I finally lifted my head to see a monster. I had no idea who was looking back at me. I was so scared that I would forever look the way I did that day. I have never cried like I did that day. I felt as if my life and my world was over. I even felt sorry for my family to have such an ugly and disfigured family member. I felt I would embarass them.

My life has never been the same since. I have gone through 24 surgeries and am heading into my 25th November 8th (I just found out). And my life will never be the same. And that scares me to no end. I cry often and with all my heart poured out in tears. What did God want me to learn from all of this? Was it simply to live my life better? Because if that was His intention He could have found a better grand plan than to hurt me so badly, inside and out. I just don't understand yet what He wants me to do with my life now. I've sent in a re-admittance form to go back to school to finish my Bachelor of Science in Psychology but is that where I belong? I still feel like I belong on the stage and on film. I can't get rid of that feeling. Everytime I watch a movie my heart lurches to be in front of that camera and it sinks at the same time knowing that dream may never come to pass.

So please, my dear friends and followers, live your life everyday to it's very best for it can change in a split second, like mine did. Even if it's a bad day, just be happy that you're alive. And make sure you tell those people that you love, that you love them everyday for you never know when yours or THEIR lives can change in that split second. A split second is all it takes.

Monday, October 4, 2010


Well, it's official! My mother faxed in a re-admission form to EOU this morning to go back to school to finish my Bachelor of Science in Psychology! Oh boy, I'm scared. My advisor, Ken Bush, is going to email me how many and what kind of credits I need to get in order to finish this up so I'm waiting on that now. I have put in on the form to start in the winter so I'm pretty nervous cause that's coming on. Of course, I'm going to do this all online, as long as the courses that I need are offered online.

So I am trying to move forward in my "what now" part of my life. I think that's really healthy and important for my psyche; to focus on the "what now" and try to push past the "why me" for awhile. However, I don't think I am ready to move on from "why me" because I am still upset with God for what has happened and don't understand why it happened but at least I can focus on something else for a little while and feel like I'm moving my feet forward. Key words: "a little while." I'm sorry but I'm afraid wondering "why me" will stay with me for quite some time. But at least I have taken action on the "what now."

I can't wait to tell you what classes I'm going to have to take! I hope this is the right thing to do right now. Actually, I feel it in my heart that it is, but am I really ready? I sure hope so cause the motions are set in place.

Loss of a World-Renowned Burn Specialist

A terrible, terrible accident occured this weekend. A world-renowned burn specialist was killed in drunk driving accident. He treated a couple Burn Survivor friends of mine and they are mourning his loss. In fact, the whole Burn Survivor community mourns his loss for he was ahead of his time in Burn Reconstruction. I'm sure some of his ideas have played a part in my procedures.

I can't imagine what it would be like if one of my own personal Burn Doctors such as Dr. Pulito or Dr. Vangelisti (Dr. McDreamy) were to be killed. Particularly Dr. Vangelisti as he is the one who is making great advances in my reconstruction. If I lost him I don't know what I'd do.

It is a terrible time in the Burn community. Please pray for all those who wear his work on their skin and/or were affected by him in some way in their lives. He was a great man and this is a great, GREAT loss. I'm so sorry Haley and Michael.

Sunday, October 3, 2010

A Betrayal?

An Anonymous person commented on my post the other day and left this scripture from James for me:

My brothers and sisters, when you have many kinds of troubles, you should be full of joy, because you know that these troubles test your faith, and this will give you patience. Let your patience show itself perfectly in what you do. Then you will be perfect and complete and will have everything you need.

I wanted to share it because I found it a most perfect scripture that I have never heard of! I like it very much because it pertains to me almost perfectly. My troubles are testing my faith, and my patience for that matter. I am in pain again today. I had a pain-free day yesterday but it has returned and it kept me from going to church today and I fear it will keep me from going to a meeting I so desperately need to go to tonight, but I am going to try with all my might to make it to this meeting.

As a follow-up from my last post, I have been thinking a lot about the question, "What now?" I got a Bachelor of Science in Music (vocal performance) but was sooo close to getting ANOTHER Bachelor of Science in Psychology as well but was short a few credits. My mother thinks I should finish up that psychology degree but I don't have the money to do so. But I also want to finish it up so I think I'm going to look into any disability programs or disability financial aid they might offer and see if I can get it for cheaper. With my mother's kind pressure, she has got me to thinking about burn nursing. Since I have been there and AM a burn survivor, she thinks I would make a fabulous burn nurse, and deep down I do too. But a part of me feels like I am betraying my dream of being a performer if I think seriously about doing something else with my life. Because there is nothing I want more than to be a performer on Broadway or on Film. That is my dream. But is it realistic now because of my injury? Because of my scars?

So, what now? Do I at least go for finishing my psychology degree? And do I go for nursing and at least have it for a real career to fall back on in however many years it takes for me to re-enter the world on my own again? That thought scares me half to death. And does it betray my dream? Does it mean that doing those things is the death of my dream?

Trust in the LORD with all your heart and lean not on your own understanding; in all your ways acknowledge Him, and He will make your paths straight. (Proverbs 3: 5-6)

Friday, October 1, 2010

What Do I Do Now?

I am still reading, "Our Scars Are Beautiful to God" and I came across another passage that I wanted to share:

"I believe that when we go through a trial which wounds us so deeply, God can use it to teach us valuable lessons. Some of those lessons are a deeper understanding of who He is, of who we are and of what we truly believe. Our faith grows in the petri dish of struggles in the laboratory of life. One of my most valuable lessons, through all my wounds and scars, was a decision to stop saying 'why me' and to begin asking 'what now?'...During the difficult months that followed the loss of our child, I strugged with God. Just as Jacob wrestled with God through his dark night of the soul, I wrestled as well. How could He love me and allow this to happen? Why would God withhold my dream? Is He able? Is He kind? Is He really there?"

I know that God is trying to teach me a valuable lesson through my accident but I still struggle so deeply with those very questions Sharon Jaynes (the author) also had. I know I should stop asking "why me" and start asking "what now" as Sharon realized but I don't know how to understand the "why me" and I don't understand how God could withhold my dreams and possibly even destroy them. How can He be an all-loving God then?

I have a dear friend, well he is actually my acting manager, and I talked to him today and he said, as I cried on the other end, that he made a deal with God that he would never ask "why" as long as I survived. Well I did survive and he has kept that deal. He refuses to ask why or respond to me when I ask him why. he told me, "It was a terrible, horrific thing that happened to you, but you lived and I believe you lived for a reason. I believe you lived to tell you story to help others and one day you will look back on all of your suffering and understand." Well, how long will it take for me to look back and understand? I'm tired of suffering. I'm tired of the pain, as I posted last night. Today I am still in pain and I sit here crying again it hurts so bad. None of my painkillers seem to be strong enough to overpower this strength of pain.

I am tired of asking why and I'm sure you're tired of hearing it. So instead, I will ask, what now? What do I do now? I am suffering greatly and I just don't understand how this God of yours can let me sit here, in relentless pain and crying my eyes out. I don't know what to do now. I'm so confused and ANGRY! of all things.

Please stop the pain, I beg of You.

Thursday, September 30, 2010

A Quick Post Tonight

I lay here tonight in great pain from the expansion I had today in my tissue expander. I'm just gonna cut to the qwick - I am so tired of the pain. After my expansion today we headed out of town to Shari's in Troutdale for breakfast and there tears began to stream down my face from the pain. I'm so tired of the pain all the time. I've been in pain for 2 1/2 years. I'm just so tired...

Hear my cry, O God; listen to my prayer. From the ends of the earth I call to you, I call as my heart grows faint; lead me to the rock that is higher than I. For you have been my refuge, a strong tower against the foe. I long to dwell in your tent forever and take refuge in the shelter of your wings. (Psalm 61:1-4)

Monday, September 27, 2010

Never Be Able to Forget

I am reading two books right fiction and one self-help book. I'd like to talk about the self-help book for a minute.

Since I had a really bad day yesterday as you all well know from my last post, i pulled out a book I was waiting to read but thought, "I need to start reading this NOW after what happened today." It is called "Your Scars Are Beautiful To God." In her very first chapter, the second line, she writes about scars, "They represent a wrinkle in time in which a person's life is changed forever, and they serve as permanent reminders of an incident that, in one way or another, has made a lasting impression on one's life."

My scars do just that - represent a wrinkle in time where my life changed forever and serve as a permanent reminder of that incident. This may bother me just as much as people seeing my scars. I will never be able to forget that accident, that terrible terrible accident that almost took my life for everytime I look in the mirror or take a shower or change my clothes, there they be, reminding me of that terrible time in my life and continued terrible time of my life. My life has indeed changed forever because of that accident and to tell you the truth, I hate God for allowing it to happen to me. I haven't gotten to that point in loving God and knowing that what happened was not what HE DID TO ME but rather just a terrible accident and something God gave me to overcome because i was strong enough to handle it and overcome it and to teach others about my journey to faith and back to God.

Another very interesting piece of writing she writes is right away in her second chapter about the second coming of Christ and about how Mary and the Apostles did not recognize Jesus until he showed them his scars where he was nailed to the cross. She writes, "Jesus did not have to retain the scars of the crucifixion on His resurrected body. He could have returned without them. After all, He is the one who put new flesh on the hands and feet of lepers. But He chose to keep the scars, I believe, because they were precious to Him....that's how other's would recognize who He was." This is very interesting to me because it is true, He could have come back without his scars but he didn't. My scars are part of who I am now and I shouldn't be ashamed of them for they tell my story, my journey. But I think that's going to take awhile to come to that acceptance but it is good to be aware of that possibility and to aim for that acceptance and love. But I will NEVER forget.

Sunday, September 26, 2010

Major Setback

Today was my baby nephew's 1st Birthday party and I planned to go. I even got dressed up for it as opposed to the jammies that usually rule my wardrobe since I stay in the house all day. So I set out to go and when I arrived at the spot, there were quite a few people there and all of them I DON'T KNOW. Except for of course, jocy and her mother. But I couldn't bring myself to get out of the car and go hang out. I was overwhelmed with fear and anxiety at the site of those people and the thoughts that may run through their minds at the site of me. I felt terrible. AWFUL!

I waved Jocy over to the car and explained that I just couldn't make it because I wasn't well enough or comfortable enough to be there but I did want to drop by some scrapbooking pages I'd made and Isaac's present. It broke my heart when she brought Isaac over to see me and I wasn't able to just buck up and get out of the damn car and own my appearance in order to spend just one hour at the least with my nephew for his 1st birthday party. I'm absolutely balling right now! What happened? I thought I had become more confident with this latest neck surgery but the site of those people at the party scared me back into the car! I felt so ugly.

So here I am, back at home waiting for the next thing I have to do today, which is the worship meeting. This I can't chicken out on, I'm part of the committee. But that is no better excuse. I'm supposed to be Isaac's AUNT! and I chickened out because I was so scared. My heart lept into my throat and my stomach turned upside down. I began to cry on the way home because I couldn't be there for my nephew or one my bestest friends. I'm still crying. Why? Why, why why did this have to happen to me? It has DESTROYED MY LIFE! So much I can't even go to a damn birthday party for my nephew. I HATE YOU GOD! I HATE YOU BURN! LOOK AT WHAT YOU'VE DONE TO ME!

Saturday, September 25, 2010


As you can see, I have a new look - and a new domain name and title - to my blog. I decided I needed a change and I believe that change is good. So I hope you like the new look, domain name, and title.

I have had to deal with a lot of change since my accident. The most obvious and biggest change being my appearance. I MAY post a picture of what I looked like before any of my surgeries if I can muster up the courage by the time I finish this post but that is a BIG MAY. I used to look unidentifiable. I cried everyday and I still cry about my physical appearance to this day but I must say that I am much, MUCH more close to my pre-burn appearance than I used to be. But even though I am closer to that pre-burn physicality, I am still different in appearance and this makes it hard for me to look in the mirror and see someone looking back at me that I don't recognize. It is particularly hard for me to look at old pictures. I am scarred now, badly.

I also have to get used to the change of being dependent, instead of INdependent as I so used to be. I rely on help with the simplest of things, such as getting a glass out of the cupboard or washing my own hair. My mobility has drastically changed for the worse and though that will get better with contracture release surgeries, it may never be fully functional again. I used to be a competitive swimmer and I may never get that full function in my arms to swim like I used to again. I may again be able to wash my own hair, take a shower on my own but as of now, I am fully dependent on help with those things and that is a change that is difficult to deal with as well.

I have also had to deal with the possibility of a change in career choice which breaks my heart clean in two for my dream was to be an actress. And now, because of my new post-burn appearance, I may not be appropriate for film. The only chance I really have at acting is in the theater but who can REALLY make money doing that? The money is in the film. And film was where I wanted to be. I loved the process of making a film and I wanted to be a part of it. Now if I'm going to be a part of film, it will be behind the scenes and I do not want to be behind the scenes. So I must look at my options and possibly break my heart, shoot down my dreams, and do something else. Besides my appearance, this is the most difficult change I will have to deal with.

Though all these changes have been for the worse for me, I still believe that change is good, thus the changing of my blog. I want to turn over a new leaf and go with the flow of these changes. I want to inspire people most of all and teach people about how your life can change in a split second so you should make the most of it everyday, every minute. That was the whole reason why I started this blog in the first place. I want to share what all I have lost because of my accident and also what I have gained because of it. I hope that I do that for you who read this blog. So don't be afraid of change. It is what you make of it.

Friday, September 24, 2010

Good FRIENDS Are Hard To Find

I had a coffee TWO hours (and i accentuate two because we had such an amazing time that it wasn't just a coffee hour, it was a coffee two hours) this morning with a very, very dear friend of mine named Kristen Larkin. She has just left and she has made me think how very hard good friends are hard to find. And I mean GOOD, TRUE, REAL, LOYAL friends. And I am happy to tell you Kristen, that you are one of those friends. You told me this morning that after the first time you saw me, you thought to yourself, "I am just so glad she is alive," and I have to tell you that I held in the tears when you said that but they are pouring now thinking back on that because only a good, true and real friend would have thought that INSTEAD of something like, "wow, she really got messed up." Many people might have said the latter because it would have been natural. But not my dear friend Kristen. She was just simply happy that I was able to be there that night because I survived my accident.

So it got me to thinking, how many GOOD, TRUE, REAL, AND LOYAL friends that I really have and it made me think that I have so very little because they are so hard to find. You can call a lot of people your friend, but how many of them are really your FRIEND in the true sense of the word? So many people you may call you friend are really just an acquaintance. It also got me thinking that even though I have very few FRIENDS, I have so many more NOW than I did before my accident so wow, I really didn't have any FRIENDS but more acquaintances and drinking buddies.

I know my accident has brought out a lot of people out of the woodwork that I may not have been in touch with had my accident not occurred but it also helped me find those GOOD, TRUE REAL, AND LOYAL FRIENDS that I may have never found, or even KNOWN what a friend really was. I am so very lucky to have the friends that I have now. But I must add that I am also lucky to have the acquaintances that I have as well because they have given me AMAZING support, just as my friends have.

So I thank some particular people whom I call my FRIEND, you know who you are. Thank you so much for being GOOD, TRUE, REAL AND LOYAL and most of all SUPPORTIVE through my journey. You have all made me cry while writing this post just thinking of you all. I can't believe how lucky I am to have found you or reconnected with you. So Kristen, thank you for inspiring this blog post and for being one of my DEAREST FRIENDS.

So for those of you who think you have a zillion friends, really think about what it means to be a friend and what it means to be your dearest friend. It's something to really think about.

Monday, September 20, 2010

Doctor Appt 9/16/10 and feeling great!

I can't describe to you how INCREDIBLE my new neck feels! I mean, it's been 3 weeks and there has been no sign of contracting. I can still look all the way up to the ceiling and sky without feeling tight from a growing contracture. I just love tilting my head back and looking up and im not even stretching it to the max! The skin is so pliable and supple.

I saw the doctor last Thursday and here's the deal. There is, unfortunately, a contracture on the right side of my neck, this contracture, however, is not interferring with the center of my neck which was just done. But instead of the doc just saying, "deal with it," more or less, he is going to use the tissue expander on the right side of my scapula (back of my shoulder) that he left in and for good reason as we know now, and expand it AGAIN to do ANOTHER flap. Only this time it won't be as major as this last one. What he is going to do is do exactly what he did when he did the flaps on the side of my neck. So he'll expand that right expander and once it's big enough, then he'll make a cut, or a slit if youw ill, and pull all that extra skin up and over (after removing the contracture of course). So I feel so very lucky to have a doctor that is dedicated to making me functional and mobile and as much as to how i used to look as he can. Next after that will be working on my lip and eye, then my arms and elbows and some dermabrasion on my face. So that's the next steps. We're starting expanding all over again. When I was there he did some expansion on me already. so back to making weekly Portland trips.

My leg is healing well on the other hand thought it is still quite the open wound and is still hard for me to get around without assistance like a walker or cane. I have begun to get around on the cane a little bit now though! I'm a little wobbly but I'm trying. I'm pretty weak still and the doctor suspects I'll be weak for quite awhile yet. I spend most of my time either in bed or I have been able to sit out in the living room in a chair if I've got a pillow under my legs.

So in the meantime to fill up my time, I have been crazily working on my cross stitchign for this bazaar. I swear I don't think many people are working as hard on it as I am. But it's for a good cause so I'm okay with workign hard at it I guess. My reading has been put on the wayside because of it though, which I'm not very happy about. I'm just gonna have to set aside my cross stitching for a little while each day and get some reading in.

Anyway, I feel GREAT GREAT GREAT with this new neck! And it looks fantastic too! Unfortunately, it left quite a deformity in my leg but that's the price I had to pay in order to have a mobile neck. My whole body is a patchwork quilt. it's gonna be hard to find somebody to love me with all my patchwork and scars.

Wednesday, September 15, 2010

Neck Pictures

More pictures of my new neck! It looks like a normal neck eh?! I just can't describe to you how incredible it feels to look up at the ceiling, the sky, to roll my head around in circles. It's AMAZING.

Saturday, September 11, 2010

A Successful #24!

It was a successful #24 surgery on Aug 30, 2010!!!! Although I think something got mixed up because they scheduled my surgery for 5 hours when it was really supposed to be scheduled for 9-10 hours. It ended up being right inbetween there. So it took all day on Monday. I didn't get back to my room in the ICU unit in the burn center until 10:30 that night. I feel terrible for my mom who had to wait around starting at 8am that morning.

Every hour on the hour that first night they checked for a blood flow pulse on my neck using a doppler machine and it was sweet, sweet music to my hears to hear that blood flow because that meant it was alive and well and healthy. I, of course, was in pretty good pain after surgery and it wasn't in my neck. it was in both my legs where the left leg had a donor site and the right leg was where they took the flap from. So I had pretty incredible pain there.

I cannot describe to you the feeling of having all that scar tissue taken off and having this new skin put on that is not supposed to contract, like grafts can. I felt free, like a bobble head. It is just such a wonderful feeling. I have this terrible fear that I am going to be the exception to the flap in that it will start to contract on me. The doctor who cleaned up the scars in my neck said it was just a gnarly mess of scars. And actually, there is supposedly a nerve that goes up to the right ear that they can usually work around but i was such a mess of scar tissue that they couldn't find that nerve to lift it up and clean around it so they just cleaned and ended up cutting that nerve so now I have a completely numb right ear!

The thing that scared me the most was my right leg where they took the flap from. They really took a chunk out of it leaving me barely able to walk because they took some muscle tissue with it. it's not pretty. Its pretty gruesome in fact. The doctor said it will take about two months before i get full strength back in that leg. Right now I walk with a walker and I walk very slowly and gingerly.

But doesn't my new neck look beautiful! It's going to look better and better as it heals! You should no go back and compare what my neck looked l ike before this surgery. it's in a not to earlier post.

Well, that's the update on my latest surgery. It's been a doozy.

Sunday, August 29, 2010

The Eve of Surgery #24

It is the eve before my 24th surgery and today has not been so great a day. I'm hoping that it is not a precursor to how my surgery is going to go.

So my phone is fried, dead, kaput. It just suddenly stopped working when we got to the hotel. So this has made me super upset because now I'll be out of touch with the world and my friends for almost a week! Getting me stressed out like this the night before surgery is not a good thing so I'm trying to just say, "oh well," and let that be it. They didn't even give me a loaner phone! So now I'm going to have to use my mom's phone to text people how the surgery went and how I'm doing. Shitty.

This surgery is going to be another big surgery. It is my 24th surgery and the 5th one on my neck. I am very scared and nervous because it is my neck, ya know? AND there has never been a successful neck surgery in the past. So I lay here, in the hotel room in bed nervous as all hell, my tummy flipping inside and upside down and negative thoughts racing through my head. Oh please, if there is a God and He loves me, let this be the most successful surgery yet to be for me. And please, if it isn't too much to ask, don't let it be too painful when I wake.

So for all you friends and followers out there, I will be out of touch completely for about a week so this is my last post and you will not hear from me on Facebook because I will not have access to the internet since my phone died. If you want to know how my surgery went, FB message me by tonight or tomorrow morning, early, your phone number and i will text you how the surgery went when I wake up.

I hate this feeling of fear, nervousness, stress and excitement. It is too much for one body to handle. Especially a broken body like mine. How do I conquer these emotions? You'd think after all these surgeries I'd have learned to be a confident gladiator with them all and take in the anesthesiology like a champ. But I haven't and I don't. Is it because of my struggle with my faith? Or is it for some other unknown reason? Well, for whatever reason (s) I am not yet the conquering gladiator of my fearful emotions.

Well, good night my friends and followers. May you have a better week than me. And if you can, sneak in a prayer for me before you go to bed at night. Some all mighty power just might hear all of you and give me a successful surgery and easy week.

All my love.

Saturday, August 28, 2010

Homemade Cards from the Larkin Kids

I went to college with Kristen and Jon Larkin and became very good friends with them. Since I have been hurt, I have begun hanging out with them a lot over at their house either playing games or watching movies. And many of those times it has been with their three lovely children, Aiden, the youngest, Morgan, the middle child and only girl, and Riley, the oldest boy. They are absolutely sweethearts to me. And I love Jon and Kristen dearly and their children.

anyway, the reason for this post is that the three kids, Aiden, Morgan and Riley each made me a little homemade card for my upcoming surgery. They were adorable and so darling. And they gave me those precious little kid hugs. I just adore them. I adore that whole family.

So thank you Larkin's. You are near and dear to my heart.

(outside of Morgan's card)

(Inside of Morgan's card)

(Aiden's Card)

(Riley's card)

Friday, August 27, 2010

A Shout Out To My Mom

I know I've written about my mother before but I just wanted to give another shout out to my mom again for all that she has done, put up with, and sacrificed for.

She is practically a nurse anymore and could go back to school to be a nurse and pass with flying colors if she wanted to because of her practice with me. I mean, just yesterday she removed a Jackson Pratt (JP) Drain from my leg and let me tell you, those are not always the easiest things to remove because they are so far down into the skin and wound. The tube isn't just barely stuck in there, it probably went 8 inches down into my wound so she had to keep pulling and pulling and she did it wonderfully. She was gentle and it didn't hurt too bad. What an amazing mom!

And on top of that she has to decide what topical medicines to apply on to any breakdowns that cause open wounds in my grafts. She reminds me to take my blood sugar before every meal. She also gives me all my medicine, how much and when they should be taken. I mean she really is practically a nurse. And she is always there when I have my surgeries and always there at the hospital during my time there. She usually gets to the hospital around 10am when visiting hours open and leaves around 8:30 when visiting hours are over. So she sacrifices her job to be there and she sacrifices good rest in order to be there all day with me, even if i'm just sleeping.

So here's a big, loving shout out to you mom for all your sacrifices and neverending love. I love you with all my heart and i thank you from the bottom of my soul for all that you do for me.

Wednesday, August 25, 2010

Feverishly Cross Stitching

Well it's 5 more days until my next surgery, Round 2 of this procedure. I'm starting to get those nervous and anxious feelings again. Everything just went so well this last surgery that I fear everything's going to go wrong on this next one to even things out.

so to pass my time I have been feverishly cross stitching because 1) it's calming and 2) i gotta get things ready for the bazaar in November and I'm not near ready. Here a just a couple recently completed projects (these are christmas ornaments):

I've completed quite a bit more but those are just a few. Right now I've switched things up a bit and instead of working on christmas ornaments, i'm working on book marks. I think they're going to turn out really cute. And they seem to go by pretty fast so I think I will get a lot done before I go back into surgery.