Tuesday, January 29, 2013

A Surprise! Birthday Party

On Saturday night I got quite a surprise.  And a most wonderful surprise at that.  I messaged my dear friend Jessie early in the week last week to see if she wanted to try and get together since we hadn't seen each other for awhile.  She said she had some time the following week (this week) but not till Saturday.  I was skeptical about doing something on Saturday because that's the day we fill my expander and I don't feel well afterwards for the whole day and often into the next couple days.  But I had not seen her in so long that I really wanted to make it.  Plus I thought I could bring my big brother along and have him meet Jessie and her husband and have some fun together.

So sometime during the day on Saturday I tell my mom of my plans of going to Jessie's and taking Jake with me.  I'm not feeling good at all from my expansion but I just gotta push through so I can see her.  Later that evening my mom suddenly says, "Well, maybe dad and I will go to Dairy Queen and get a treat while you guys are gone."  I suspect nothing.  About 6:45 rolls around and her and my dad take off, supposedly to Dairy Queen, but again, I think nothing of it.  Jake and I are expected at Jessie's at 7:00 but we're running a little late.  Finally we arrive, about 10 minutes late, and I knock on the door.

Jessie comes to answer the door and I give her a hug, say hello and walk into the living room where I see some of my dearest friends and mom and dad standing on the other side of the living room and then, "SURPRISE!"  I. Am. Definitely. Surprised.  I had no clue, no idea.  Jessie had even gotten my best friend, Corrie, who lives in Seattle, on Skype for when I walked in.  So she was even "there" in a way to surprise me.  I couldn't believe the work Jessie had done to do this for me.  There were decorations, themed in red and white to represent the colors of the White Stripes, my favorite band ever.  AND for those who lived out of town and couldn't be there, including Jack himself ;) she had made cardboard cutouts on popsicle sticks with the face of the person on the cardboard.  That was so clever.  All the food was red and white.  It was just incredible.

My dearest friends from in town were there and if they were out of town, they were there on the cardboard cutouts....or on Skype, like my best friend.  And my family - my mom, dad and brother - were there to celebrate as well.  I've never really had a surprise party before.  I kind of had one last year but this was a lot more people and a theme.  A friend who is out of town in Montana on a sabbatical even recorded a message for me!  It was so sweet.  The effort that went into this surprise party was amazing!

After I had hugged everyone and said hello, I settled in and we all started snacking on the delicious food and talking to one another.  I was so happy to see everyone there, took some fun pictures and did a lot of laughing.  Best of all was how loved everyone made me feel.  I was just showered with love and I truly appreciated it.  I really do have a wonderful family and the best, BEST friends.  It was such a fun night.  I got to have a lot of people I love dearly all in one room together with me, eat good food, have hearty laughs, be silly, open presents and listen to good music (Jack White of course).  Someone finally threw me a surprise party.  I've always been throwing parties for other people and someone finally did it for me.  Thank you to my family and thank you to my awesome friends who put in a lot of effort to do this and be there for me.  You are all just awesome and near and dear to my heart.  I love you.

Those who live out of town and couldn't be there.
Top, from left to right: Jack, Corrie - my best friend
Bottom, from left to right:  Clay, Jen, Jessa

Wednesday, January 23, 2013

Turning 31

A person taking stock in middle age is like an artist or composer looking at an unfinished work; but whereas the composer and painter can erase some of their past efforts, we cannot.  We are stuck with what we have lived through.  The trick is to finish it with a sense of design and a flourish rather than to patch up the holes or merely to add new patches to it.  ~Harry S. Broudy

I know I am not quite to middle age but it can still apply.  I am 31 today.  I think it feels worse than 30.  Thirty was a marker.  But thirty-one just feels....lame and older.  I still live at home, though it is not by choice I know, but still, I live at home and I'm 31.  When I was 23 I really felt like my life had started because I had really moved out.  I had moved to New York City.  By myself.  I was really responsible for myself and my life then.  And then I had to come home for a break at age 26 when I was a little messed up about my life and my accident happened.  My accident happened and halted everything.  Almost making everything go backwards.  I was injured severely, almost died, and back at home being taken care of.  And now, just a couple months shy of five years later, I am still at home going through surgeries and recovery.  I have a love/hate relationship with my life when I look back and take stock of it.  I love some of the things I have done and been brave with and I also hate some of the stupid things I did.  But maybe I don't believe in mistakes anymore.  Because mistakes make us who we are.  I can't erase anything I've done in my past.  But I can enjoy the memories of the good times and learn from the bad.  And what I can do is work on finishing with a design or flourish instead of patching up holes or adding patches as Harry Broudy said.  I may still live at home and going through surgeries and recovery but I don't see why I can't start now.  There is only excuses to wait.

I have been hung up on the past these last five years since the accident.  What was, what I was able to do, what I used to look like, what I used to do, who I used to be.  But I promised myself this year that I was going to move forward and stop all that.  Some of it can be used in a constructive way if done so properly, which is like walking a fine line between using it constructively to move forward and getting deeply depressed.  But I agree so strongly with Soren Kierkegaard when he said, "Life can only be understood backwards, but must be lived forwards."  There is so much we can learn and understand from our pasts but it is not to be lived in, only reflected upon to make us better people and then we must continue forward.  We must move forward aiming to finish with a sense of design or flourish.  We can't change our pasts.  But we can do something about our present and future.

I am 31 today.  Happy birthday to me.  I have a bit of a new wish in mind this year for when I blow out my candles.  Nope, can't tell you.  Or it won't come true ;)

Monday, January 21, 2013

Off Of Morphine!

I never thought this day would come.  I am, after five years of taking it everyday, finally off morphine.  Garrett has been wanting me to try and get off of it for quite some time because it was always so hard to control my pain in the hospital after surgeries because I was so tolerant to most all the pain medications.  Then he laid off of it because my PCP told him there was no reason for me to go through the torture of getting off such a strong opiate if I was just going to be going back into surgery again and again and needing it.  So that plan went away for about a year and then when I went in for a post op appointment in November 2012 after a couple surgeries, Garrett brought it up again that he really wanted me to try and get off the morphine.  He suggested just doing it a little at a time by reducing the amount 10mg's at a time for a couple weeks and if I felt OK, to reduce 10mg's again for a couple more weeks and so on.  So my mom and I decided we'd try to do it once and for all after my December surgery.

So since we only had 30mg and 15mg tablets, we would have to reduce 15mg's at a time since we couldn't cut them in half because they're extended release tablets.  I was nervous, to say the least.  I'd gone through the withdrawals a couple times when I forgot to take my pills and it was hell.  Absolute hell.  Now I was taking 45mg's three times a day.  So first we reduced the lunch time morphine right away and quickly cause I seemed to do OK without that lunch dose.  Then it was on to the morning and evening doses.  We reduced the morning dose first by 15mg's and 15 more a week later keeping the evening dose the same.  Then we tackled the evening dose by reducing 15mg's.  I started getting withdrawals now.  I was cranky and just felt like shit.  Just felt, well, like I needed the drug.  My stomach was upset, I got clammy, headaches, irritable.  But it lasted only a few days and I felt better so we started reducing again.  And once again, I felt the withdrawals and had a couple very rough nights where I had to take additional morphine in the middle of the night to stop the withdrawals and just get some sleep, even if it was only an hour or two.

And now, a month and a half later, I went my first day without any morphine yesterday.  And I made it through without any problems, even the night.  What a feeling!  I am off morphine!  After five years of taking it faithfully everyday, three times a day I am off it!  I never thought I would get off the morphine while still in surgeries and I never thought I would be able to do it the way that I did, by just reducing slowly without any other drug to counteract the withdrawals.  And in just a month and a half!  It has only been a day being totally off so I may still have some withdrawal problems in the days to come but I made it through my first day and night.  And I feel good about that.  I am still on short acting pain medications but I don't seem to ever have a problem stopping those when I don't need them.  It was the long acting morphine I had such a problem with.  But no more.  It's done.  And I don't know what I'm going to do when I have surgery again but I cannot let them give me morphine again after all I've gone through to get off of it.  So I'll have to try and stick to short acting pain medications.

Being off the morphine may help a couple things, too.  Like my weight since it got in the way of my weight loss attempts and better mood.  Long term pain medications like that can depress mood so I'm hoping my mood will improve and losing weight will be a little easier.  I want to thank my incredible mother for being patient and understanding when I had rough days.  I feel good that this great mountainous feat that has been looming before me for many years, knowing I would one day have to tackle it, has finally been tackled and I came out the other side triumphant.  I did it.    

Friday, January 18, 2013

Doctor Appointment 1/16/13

I had a doctor appointment yesterday with my burn doctor.  It was to check on my tissue expander and see how the home expansions were coming along.  Basically an assessment.  It went really well and it was good to see my doctor again.  Particularly since evidently he had a near death incident himself in December when he was operating on a patient and suddenly doubled over with severe abdominal pain.  He was rushed to the ER where they discovered his stomach had flipped and then rushed him into emergency surgery.  You can die from that shit.  He was incredibly lucky.  And so am I because I don't know what I would have done without him as my burn doctor.  He's done incredible things for me and he knows me, he knows my body and how it reacts.  We have a history.  We've been working together for four years now.  So I'm very thankful that he's still here.  So even though it was a serious thing, we had a few laughs about it with jabs like, "glad you didn't die," and "try not to do something like that while you're operating on me."

He seemed happy with how the expander looked and how much we had been filling every week.  Then he went ahead and did a fill himself while I was there.  He filled one syringe which holds 60cc's and injected it into my expander then went back to fill it again and I thought he was just going to fill it with 20cc's more as we had been doing at home for a total of 80 but I noticed he filled the syringe to it's max making that 120cc's and I'm thinking, oh my, he's gonna push it.  I thought he would be done with that but he went back to fill the syringe a third time!  My dad suddenly asked how much he was putting in today and with his killer smile he said, "I'm not telling till after I'm done."  I responded with, "smart man."  His back is to me while he fills the syringe from the saline bag and I'm situated in such a way that I can't really see how much was in the syringe when he was done filling it and came to me so I wasn't sure how much was in that third syringe.  But I was feeling it.  I was feeling pressure and stretch.  When he was done he had put in 150cc's.  Nearly twice the amount we were doing at home.  And I could feel it.

Then he got some supplies together for us before sitting down at the computer beside me and figuring out a tentative surgery date.  He wants about four more fills of at least 100cc's which puts us at a possible February 22nd date for my 38th surgery.  I'll only be in the hospital a few days since it's a flap procedure so there won't be a graft or donor site.  I hope there will be enough skin to stretch not only around the side of my neck but also around my neck under my chin to relieve some tightness there as well in the hopes that it will get me closer to my lip surgery.  So I'm really gonna push it with the expansions these next few weeks to really get that skin stretched and I probably won't be feeling the best these next four weeks.

Friday, January 11, 2013

Nose Piercing Is Back!

As many of you already know from my facebook, I finally got my nose pierced again!!  When I was burned, they took out all of my piercings, except my earlobes, and my nose was one of my favorites.  Other favorites were the cartilage in the upper inside of my ear and my belly button.  But I've been wanting to get my nose pierced again for, well, almost five years now.  Since my accident.  I was going to have to get it done when I was in between surgeries for at least two months and the opportunity presented itself this December after I got my tissue expander in.  It takes at least three months, sometimes more, to get the expander at it's full capacity so it was time to go get it pierced.  My mom surprised me when she told me she called a place to see how much it would cost and the next day we had an appointment to go.  I was so happy and excited. I'm determined to reclaim my body.  Make it mine again instead of the fire's.  So, first I got a long awaited tattoo, of which there are more to come as soon as surgeries slow down and donor sites far and few between.  Next I got my nose pierced again.  And next up I want to get that other ear piercing back I talked about earlier.  Possibly after my next surgery....

The piercing went just as I remembered it.  Didn't hurt.  Out of all the piercings I had, I think my nose hurt the least.  Of course your eyes naturally water a bit cause they do if you do anything to your nose but other than that, it was over before I knew it.  And when she got the stud in, I felt like a piece of me was back.  A small piece, but a piece.  I looked over at my mom with a huge smile I felt so good.  I felt a little more like me.  I know it's seems silly that a nose piercing would do that but the fire took so much from me, so much of my body that to take back pieces of me is huge.  And positive.  And moving forward is what I'm all about from now on.  I know I'll have setbacks here and then but that's to be expected.  As long as I get back up and slowly take back what was mine and more, I'm moving forward.

 (The nose stud - when I first got it pierced)

(Trying out a nose ring - nearly a month healed)

Wednesday, January 9, 2013

Finding My Gold

"When the Japanese mend broken objects, they aggrandize the damage by filling the cracks with gold.  They believe that when something's suffered damage and has a history it becomes more beautiful."  ~Barbara Bloom

I am a broken object.  I have suffered damage not only to my physical self but also to my soul.  I feel as though there has been an abscess on my soul that has only gotten bigger and bigger through these last five years and I don't know how to heal the damage.  The Japanese aggrandize the damage of a broken object by filling the cracks with gold to make it more beautiful.  I feel like the accident has reduced me to nothing but cracks and it's gonna take an awful lot of gold to make me more beautiful.  So what is my "gold"?  I think it's going to have to be a number of things.  Not just one "gold" piece is great enough to glorify or improve my damage.  There are many materials that will make up my gold.  Like love.  Like peace.  Like real, true friendships.  Like finding joy and happiness, acceptance and forgiveness.  These are all things that will fill the cracks of my damaged physical self and inner soul and become beautiful again.

Monday, January 7, 2013

Home Tissue Expansions Coming Along

Since I've got a great and considerate burn doctor, he didn't want us to worry about driving down to Portland every week through the winter and bad roads to get my expander filled, he taught my mom how to fill it at my post op appointment in December after my last surgery.  So every Saturday we've been filling the expander with 80cc's.  So far we've done four (or five?) expansions and it's starting to get really big and really noticeable.  Not to mention, painful.  When it first gets expanded and intermittently in the days afterward, it feels like a migraine in my shoulder/neck.  Despite her hesitancy to do it this way, my mother does a great job.  Actually, it's like a team effort between her and my dad.  Since the saline solution is so hard to draw into the gigantic syringe, my dad draws it out and injects the solution into my expander while my mom handles the needle and sticking it into the port.  I do not look forward to Saturday's.  I have an appointment with my doctor on January 17th so he can see how it's coming along.  I'm sure we'll have many more weeks to go with expansions.  He wants this thing big so he has lots of skin to work with.  Ugh....

Sunday, January 6, 2013

2013 - A New Year To Move Forward

I realize I haven't written in nearly a month but this has been a trying last part of the year for me.  I had five surgeries in the past six months and have been battling severe anemia that has been taking away so much of my life because most of the time I just want to lay down or go to sleep I'm so tired.  Or I'm too weak to get up and do anything, even to write here.  It has been doctor appt after doctor appt and blood test after blood test with an increase of my iron dosage each time and to no avail because after each increase in iron dosage and blood test, nothing is making it better.  And I'm taking a lot of iron.  But onward...

It's a new year.  I used to be into resolutions but then I started noticing that they never really changed.  They were pretty much the same every year.  So I don't make resolutions really anymore.  But I do always want the new year to be different, better.  This year I want to make some dreams come true, as a friend put it to me on my Facebook page.  I want to be more productive and that includes on here.  I wouldn't say I want to "start" losing weight because I have already started.  I have been working on that for this past half of a year more intently.  It has been a battle but I really think this is the year.  I'm really tired of being a shadow of my former self so I'm going to get myself back.  That's really the most important thing I want for this year.  To get me back, but with even better compassion, understanding and courage than I knew of myself before.  My trials and tribulations in the past (almost) five years have changed me, but for the better.  I have found out things about myself and people in my life that I don't think I ever would have had I not been through them.  I wish I didn't have to have gone through some of the hellish ordeals that I've gone through to find those things out but that's just the way that one went for me.  Accept.  It's time to stop living in the past and live in the present.  It's time to stop dwelling on what was and accept what is now and make the best of it.  Of course, easier said than done, right.  But I'm also going to be turning 31 this months and I feel like I've done nothing with my life in the past five years.  Such a waste of life it's been these past five years and I don't want to make it six.  

More productivity, more patience, more smiles, more laughter, more love for me for this new year.  More dreams to come true.  More moving forward.