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)

Never Be Able to Forget

I am reading two books right now...one 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.

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!

Change

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.

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.

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.

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.

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.