Saturday, January 30, 2010

Doctor Appt Jan 28th.

I had a doctor appointment on wednesday the 28th and he was happy at the looks of the neck graft and then made a big plan. Here are the next steps for surgery: 6 operations including a couple regrafts, shoulder and elbow releases, another round on my bottom lip, and he's going to do liposuction on the outersides of my thighs so he can get workable skin there, rather than doing another tissue expander so that'll be interesting.

It's incredible what they can do with medicine. Those surgeries are to be planned within the next couple weeks. I am not going to be a happy camper after these surgeries cause i am certainly gonna be laid up. These surgeries will make up #20 - 26.

Tuesday, January 26, 2010

Lucky for My Followers

I feel so lucky to have the kind of followers of my blog that I do. Every now and then I get new followers and that really excites me because I look forward to fresh new comments from that person.

I am very fortunate to get the kind of comments that I get because you have no idea what they mean to me. They mean so much to me that sometimes they make me a good way :) They help me to put things in focus and in perspective. There are a couple of you who really make incredible comments and truly make me feel better and make me reflect on what I have written and how I feel.

Thank you so much for signing up as a follower and thank you even more for your incredibly insightful comments. They truly help me more than you know. Please do not be afraid to leave a comment. I am going through a really rough time and some of the things that you say help me get through this time in my life. So thank you for your comments, you care, your concern, and your help through this. I hope you continue to follow regularly and even refer more people to follow because the point of my blog is to help people to appreciate their life and what they have and perhaps even to have someone to relate to if they have been injured. But most of all, you, my followers, help me through this very difficult time in my life. So thank you and I love you all.

Monday, January 25, 2010

Typical Clay

This is my dearest friend and pastor Clay. I mention him a lot so I wanted you to see him....and his sorry Clay if I've embarassed you but I couldn't help it.

28 years old and What Have I done?

I turned 28 years old on January 23rd, just a couple days ago. And it isn't until now that I've been able to reflect on being 28 years old. I mean i have lived for 28 years and when you put it like that that really seems like a long time from being just a baby. From being just a child, looking up at people who were this old seemed like forever away. And now I'm here and what have I done?

I feel like I've done nothing. I was very successful in school. But then after school I feel like I wasted my life. Firstly I wasted my life on a boyfriend who was a piece of shit and turned me into somebody I didn't know. So this somebody I no longer knew, took a job as a legal assistant after college in my hometown instead of immediately leaving for New York like I had been dreaming and planning for a very long time. But because of him, I stayed behind. And I wasted a year there, being miserable with my life, hurting my family. Then finally I decided to make the move to Portland. And why didn't I move to New York instead? Well you can guess why. After finally breaking up with him after 6 months in Portland, I finally made the move and I feel like that's when my life finally started.

I loved New York. I was the happiest I'd ever been in my life. And I was so angry at myself for not being strong enough to do it sooner. I felt like I was late in getting going. I have already blogged about my times in New York so I won't rehash it.

Then I came home for a visit in March of 2008 and that's when my accident happened. And now I feel like my life is back where it first started: going nowhere, stalled. And I don't know when it's going to start again and this time I'll really feel late in getting things done with my life. I'm 28 and I'm not married, I don't even have a boyfriend. I don't have any kids. I don't have a career; I don't have a car; I don't own a home. Listing all these things off make me feel like pile of worthless shit. The only thing I can say I've done is New York City, and that was only 4 years out of my 28.

I look at my other friends and they have careers, homes, cars, boyfriends, husbands, children. And I won't be able to get started on my life again for another couple of years because of my accident and I couldn't be more upset about it. It has truly stalled and devastated my life. How do I make up for all those wasted years and this lost time from the injury? I honestly don't know. I do know that I can't get back to New York because of my insurance and this devastates me. That makes me feel like I have forever ruined my life with this accident. What will I do in Oregon for my career?

I am sitting here watching It Might Get Loud, the documentary featuring Jimmy Page, The Edge and my beloved Jack White. And I'm listening to their life stories and they actually have stories to their life that provide a history. What kind of stories do I have to tell? I feel like I don't have any. Not like what I'm hearing from Jack. He's got amazing stories to tell about his childhood, his young adult years and his adult years, his song writing. I can't think of anything nearly exciting about my life as his. I mean his stories led to an amazing career. My stories go nowhere.

Well, that's it I suppose. I just want a story and the career I always dreamed of.

Thursday, January 21, 2010

MIssing New York City

People ask me what I liked so much about New York and a million things came to my head. But if i had to nail it down to just one thing, it's the energy. And I don't know how to describe it to make more sense for you. And I know it sounds cheesy and corny but you will only truly understand and feel what i'm talking about until you go there and when you do, you won't be able to NOT feel the energy of the city.

I miss New York City. I miss, of course, the energy. I miss the lights, the beautiful buildings, the streets of Broadway shows and going to go see the shows themselves. I miss the West Village so much. The West Village was my dream place to live in the city. I spent most of my time there. I wo
rked in midtown but pretty much every day after work, i was headed down to the village to meet friends for a drink in the cutest little bars and pubs or to go shopping in the local businesses where I would buy the cutest pair of heels or boots or jewelry in a shop that is so small and so packed you don't know where to start and you're never ready to buy cause you're not sure you've seen everything!

When I lived in New York I did a lot of stuff. I probably saw more than 20 Broadway shows, a Yankee game, several Mets games, had picnics in central park, went ice skating in both central park and Bryant Park; I saw movies on a big drive-in screen sitting in Bryant Park in the summer evenings; I spent the Fourth of July in Coney Island one year and watched the amazing fireworks on the beach; went row-boating in the lakes of Central Park; the sea of yellow taxis filling the streets. I miss how the chinese people who ran the laundry business right across from my first apartment knew me when I came in to drop off my laundry. I miss the little mom and pop shop where I used to grab a coffee on my way to work and how they would truly be concerned when I came in to buy medicine cause I was sick. I miss sitting on top of the roof of my second apartment and looking at the skyline of Manhattan, thinking, "I can't believe I finally made it here."

I met new people and made new friends everyday. The variety of people was wonderful and the people were actually wonderful too. So many people have the wrong idea about New Yorkers. That we're mean and rude. Well we may not look at you or smile at you when we are walking by because we're constantly protecting ourselves. But if you stopped to ask a New Yorker directions, they are the nicest people making sure you know exactly where you're going.

There are so many more things I miss but this would be a novel of a blog if I went on about everything. I hope someday I can get to go back there but right now that is not in the cards because of my injury. Even when I am well enough to be on my own again, I have to stay in Oregon for my insurance. And I just may not be done with surgeries and pain-free for a long time so I will need this amazing insurance I was able to get. So it is Oregon for me for awhile and I will continue to think and dream about New York, missing it.

Sunday, January 17, 2010

New Measurements!

Everytime I go to see my reconstructive doctor I always have to follow up with seeing my occupational therapists over at the Burn Center/Wound Clinic. Well I certainly got great news this last time I went. But let me start from the beginning.

When I was first injured these were my measurements:

Neck extension (raising head to ceiling) was a mere 5 cm. i basically couldn't raise my head at all. I was stuck looking at the ground. Turning to the left and right was both 30 degrees, which once again, is nothing. I basically had to turn my whole body to look left or right.

After my first neck surgery when we did measurements after I got my halo off my measurements were so amazing everyone wanted to cry and/or jump up and scream, which some of them did the latter. My neck extension had gone from 5 cm to 14 cm! my rotation to the left and right were both doubled to 60 degrees! It was amazing. I felt so good. I had not been able to move like that for nearly 18 months.

When I was at another doctor appt and went to my follow up occupational appointment they measured again and there was no bad news. I hadn't lost any ground. but I hadn't gained any. I was exactly the same. So in a way that was good but I could already feel my neck contracting again. It was a struggle to meet those same measurements. This worried me.

Now, after this second neck surgery, my measurements were even better! My neck extension was 15 cm!! My rotation to the left increased 10 degrees to make 70 degrees and my right rotation was 65 degrees! I gained another cm in my extension! Now that probably doesn't seem like a whole lot to you but just imagine this. Tuck your chin to your chest a bit and take a ruler and measure 5 cm when you extend. Then extend your neck to 15 cm and notice the immense difference. I don't look at the floor anymore! I can look straight ahead without pulling up and I can see the sky. I can look left and right without having to move my whole body! And get this too - normal range of neck extension is 17 cm and I'm at 15! I'm not too far off!

I have made incredible gains in my neck and I just am so ecstatic about it! so with this second neck surgery i gained even more mobility! I am so lucky to have the doctors that I do cause they continue to perform miracles on me. 15 cm! 70 and 65 degrees!!! WOOT WOOT!!

Saturday, January 16, 2010

My Mother's Strength and Sacrifices

You know what I find interesting is that when I got injured it was my father who was the most emotional one. Usually it's the other way around and the mother is the most emotional and the father the most calm trying to keep mom calm and keep everything calm and under control. But it was my mother who threw the blanket around me and put me out, went downstairs to call 911, and she was the one who drove to Portland in the middle of the night while my father was a complete mess with everything. I find that very interesting.

My dad is a very non-emotional kind of guy and I was in complete awe that he was the one who was a wreck when my accident occurred. My mother kept it together for the both of them and that had to be tough. Because my father broke down she had to step up and be the strength through the ordeal.

When I arrived at the hospital and my brother Jake made it down he also broke down and was not able to gather the strength to keep calm. I am very close to my brother Jake so I suppose it is not unusual that he would act the way that he did. He paced the floors, going in and out of my room, holding my hand and just looking at me, sometimes speaking softly to me. My father, who is not really the most religious man, took a book of prayers and stood by my bedside that entire month I was in a coma and read prayers from it. My mother on the other hand, did not get a whole lot of time to be by my bedside because she, being the strongest one of them all, was busy tryign to get me covered under insurance and get things in order from over in New York where I was living. I feel terrible that she had to go through what happened to me and have to deal with all the paperwork and insurance work at the same time.

It can be so surprising what roles people play when something happens. I would have bet on my father being the calm one and dealing with all the paperwork and my mother going out of her mind with emotions. But it was exactly the opposite. And I thought my brother Jake would be more angry but once again, he surprised me by extremely sensitive and worried and he was constantly there at the hospital. I mean constantly there. And I love him dearly for it.

And I love my dad for once in his life showing emotion and reading to me even though he wasn't sure if I could hear him. but most all I love you, mom, for finding the strength to deal with everything while I know she just wanted to focus on being by my bedside morning and night.

Now since the accident, my father does not really play much role in my recovery other than taking me to portland every rare once in awhile. Nothing against my dad, he just isn't there in my recovery. My mother however, is my care taker and is the one who dresses my wounds day and night, takes me to therapy, gives me all my pills, comes into my room at 1am and sometimes again at 4am (time subject to change) to give me pain pills and soothe me when I'm crying from the pain. She is am amazing woman. I love my father, I really love him. But it is my mother who has sacrificed her life for me in this accident and recovery. She has given up so much to take care of me and I feel so guilty for it. But I love you mama and I thank you for what you have done and continue to do for me.

Friday, January 8, 2010

Complications during Surgery

On December 28th, 2009 I was going to have 3 surgeries done as you can read in one of my posts entitled "Surgeries #17, 18, 19". Well complications during surgery changed those plans.

For some reason, despite my latest neck surgery they still had problems intebating me. So they went to go and cut my neck thinking they would just have to graft a strip of skin back on but when they cut my neck, it just fell open forcing them to perform an emergency surgery on my neck and have to completely redo everything they had done on my neck in the fall. This was devastating to everyone, including my doctors but most all, me. So this 2 hour surgery turned into a 7 hour surgery.

So you're probably all wondering if I had to have the halo on again after having my neck redone. No. And the reason is is because they did a full thickness graft this time. Last time they did a split-thickness graft. Now in a split thickness graft they take just the top layer of skin and graft that. But in this option there is more likely a chance for the graft to take but more of a chance to contract again, therefore putting me a in a halo helped to prevent those contractures from developing. In a full thickness graft, they take the full layer of skin, all the layers of skin, and graft that. Now in this option, there is great risk of the graft not taking because it is much thicker and harder for the blood to get through to the top layer and carry the oxygen up there.

Well, being the problem child that I am, the graft was not taking. So my reconstructive surgeon had a wild idea for a radical treatment called Hyperbaric Chamber Treatments. Hyperbaric Chamber treatments are where you lay on a gurney and are placed inside this very small tube. They then "dive" you down and high levels of oxygen are pumped inside. Now they say "dive" because it is like diving down to the bottom of the ocean with that extreme pressure so that you then must "ascend" to the top at a slow speed so as not to get "the bends." This is the same in the hyberic chamber. After diving, and high levels of oxygen is pumped into the chamber to stimulate the skin, they must then "ascend" you back to the surface slowly or you will actually get the bends even though you are not actually in the ocean.

I went through 9 treatments and it truly helped! The doctor came in and was very happy and impressed because it seemed that the treatments worked and oxygen got to the surface of the graft and that it was going to be fine. phew! We were all very worried there for awhile. However, there was a small area around my mouth that did not take but he said that's ok. That he can fix that much easier than a whole graft not taking.

But another great thing is I finally got my mouth done! Those of you who have seen me will be very impressed with how my mouth looks now. I'm so excited about that. So everything that happened was my mouth, neck (which was not planned) and tissue expanders put in my back. I was scheduled to have a release on one of my shoulders but after the neck issue, my other doctor who was going to perform that surgery did not go ahead with it after the complication arose.

So my one or two night stay in the hospital turned into nearly 2 weeks. But now here I am, a day after I finally came home and I'm ok. Just going through recovery....again. And more pain only this time I have a lot of pain because of where they took the full thickness bum! So it hurts so bad to sit down. In fact I can't sit down. I have to kinda position myself in a half laying down/half sitting position. But even then I'm in a lot of pain. Full thickness grafts hurt terribly. We could not get my pain under control while in the hospital because I hurt so bad so I was once again put on a Diuladid PCA for the entire time I was there along with morphine and oxycodone pills. So here I am, at home and back on pain killers again.

But once again, I went through some very rough surgeries but this time there was serious complications and an emergency and unplanned surgery which was very scary for everyone.