Not good

I have had a rough few days- pain has spiked in a bad way.  I will talk more about it later just wanted to give you a heads up about WHY I didn't come back to update my blog.

Pain Clinic appointment was horrible as always.  I wish my doctor would get it straight- if he says I had staph ONE more time- I am going to punch him. Hello, get to know your patient.  I know, he is new to me but geesh. Read a chart!  Lots of blood work and xrays of my back to check lead placement.  More on that LATER!  I gotta go chill out.  Not in the mood to write.

Halloween

I am always behind- that seems how I roll lately.
I love Halloween, it's such a fun day!  I am not about the scariness or gore but any day that is about candy- well I am all over that!

My friend Amanda, who I have know since elementary school had a fabulous party on Friday night.  I knew way ahead of time about the party so I started thinking about my costume weeks in advance.  Nothing thrown together this year, I wanted to make an effort! 

I had already set my mind around being some type of greek goddess.  I just thought it would be fun, to get all gussied up and a goddess would be the perfect way!  I found the costume and it just happened to be Venus.  Do you know WHO Venus is?  Well, sit back and let me tell you.  Venus is the Goddess of beauty- I am seeing some irony in this but Matt tells me I am being silly and the only one who will see it that way.

The costume in the front showed off my glorious- err i mean scarred right leg in all it's glory- see that was the word I was going for. ;)  I didn't realized just how short the front was until I saw myself in a picture from the party but I didn't think about it ONCE and I felt pretty so guess it didn't matter.  Back to the costume.  It was short in the front, long on the sides and back.  It was really pretty and I was stoked about it!

I was a little leary about my right leg showing but not ONE person said anything about my scars or even asked what happened to me.  That my friends was a first. Anytime I wear shorts or something that shows scars I always get questions.  It was a great confidence booster.  I wasn't even self concscience about the dress showing off the scars either.  Now, that is hit or miss depending on my mood.  I guess because I felt really pretty the scars were a non-issue.

The best part of the night... I won best costume!  Sweet!  Which means I won a photography shoot from  my sweet friend Amanda!  That is gonna rock!

The kids had a great time on Halloween night!  They got lots of candy that we have hid away for an upcoming road trip.  All in all a good time was had by all.

I go to Pain Clinic this afternoon.  I will update about that later.  Not looking forward to it.

So many thoughts.

I had about 3 potential blog posts written "in my head" but now I can't seem to keep my thoughts straight or even organized. I do this from time to time. Once again I blame anesthesia and lots of medication I have had to take over the course of the past 2 years 10 months. Plus due to these aforementioned items- I get distracted...VERY easily.

Should I blog when I get the ideas in my head? YES! Do I? No!

Topics to look forward to
1. Halloween
2. Being the topic of discussion in a Microbiology class, seriously...They actually discussed ME.
3. Katy is having a baby and other totally awesome things will be revealled!

I will leave you with this. I heard this song a while back on my XM Alt Nation Station(haha that ryhmed) I kinda filed it away and didn't think much about it UNTIL I heard it again on another blog I read. I think there are several of us that can relate to it. Anyway, the lyrics are what are important here. It's ALWAYS about lyrics with me and I think most of you know that I am HUGE music person!

Issue # 867, Pac-Man

I am the first to admit that I am slightly neurotic, well maybe slightly is an understatement. Was I this neurotic 3 years ago? Maybe, but I can't even remember this point of my life 3 years ago. I was "normal", had all the muscles in my right leg, wasn't covered in scars...Just going about my NORMAL life.

I know there was a point in my life when I didn't have to think about every step I took, when I had to adapt my life to my pain level, or activities limited due to my standing or walking tolerance. I went 27 years having a "Normal" life but really what is Normal anyway. If you know me a slightest bit, you probably know I am a lot of things bundled into one awesome person(yes, a little self promoting never hurt anyone)

But Neurotic, I don't remember 3 years ago, October 2006, BEFORE I got sick that I was hand washing queen of America. I am pretty fanatical about cuts, scrapes and bruises too- Did any of this cause my NF? Did any of this cause the Strep A to go insane and attack my body? Was there anything I could of done to have changed the events and outcome of events that forever changed my life? Who know- but what I do know is; it's NEVER done me any good to question if I could have done something to have prevented this. It only leads me down a road that I don't want to go down.

When I first got home after being gone for 2 months in 2007 I had a reoccurring nightmare. Every single night I had this nightmare. It was to the point where I did not sleep at all in the early days that I was home because of the "PAC-Man" dream. I did blog about this once, back in the early days. I am sure you could dig in the archives for it but I will save you the trouble.

Cliff notes version. Matt and the doctors are playing a game(PAC-Man) in the OR, with a big screen TV showing. Basically PAC-man is what is eating my muscle, tissue and fascia. How is THAT for symbolism. I still cringe when I see a PAC-man t-shirt.

Then on one of my favorite blogs that I read I come across this today. I started to feel panic set in. It took a long time to shake this dream and sometimes, it sneaks in. I will NEVER be OK with PAC-man. Don't tell me I will, because I don't want to be. I don't want to make peace with PAC-man- it's not gonna happen. Go check out the link....

http://thepioneerwoman.com/homeandgarden/2009/10/christmas-gift-idea-pac-man-jewelry/

Rainy Wednesday

I have a BIG problem. Well, i have several problems, but don't hold THAT against me! Besides being the most random person you know, I blame anethesia, 18 surgeries in 2 1/2 years will do that do a person. Oh wait, where was I going with this. See, I told you I have problems.

In order for me to stand, I am talking about just standing, I have to lock my left knee and put ALL my weight through my left leg. I have tried other ways and I just can't get it to work. I feel awkard, wierd, and on the verge of falling. I have noticed my left knee starting to ache off and on for the last several months. I even mentioned my knee starting to hate me at my last ortho appointment. Maybe it was the weather change, barometeric pressure drop, the universe hating me, or the fact that I had bad knees anyway from my basketball years. Point is, my left knee is probably on the verge of being in not great shape. FANTASTIC! This is just what I need in my life!

Walking last night was hard, I need my left leg to do the work that my right can't. This is not the time for something to go wonky with my good leg. So, I am grounded and Matt said the pink cane MUST make a reappareance until I get my knee situation under control.

I also need to get something off my chest, it's gonna be cleansing and make me feel better. I need ONE day, or 10 minutes of NO PAIN. Seriously, almost 3 years later and it's really getting OLD. So, Go away Pain. Thank you!

From Matt's perspective.

Matt wrote this as part of the submission package with Patients of courage. It's written as a narrative but still expresses his feeling and thoughts. Sit back, relax and grab a tissue. I still tear up when I read this and I have read a million times.

How Patient Successfully Recovered:

It was after midnight on January 5th 2007, over 4 hours had passed when a surgeon came by to tell us of the devastating news and condition of Christi. She was in the fight of her life and the odds were stacking up against her. She was being consumed by an aggressive, invasive bacteria that lead to NF and myositis. The doctors had warned to prepare ourselves for the real possibilities for the loss of limb and/or her life. When dealing with sepsis and invasive infections, as described by the doctors your only clinical/medical course of action is to debride (surgically remove) tissue and try to get IV antibiotics into the area. In her case, the infection settled into her right hip/pelvis area, down to her thigh, with some infection within the walls of her abdomen. Over the course of the next 22 days she had 10 surgical operations to remove tissue and “washout” affected areas. The frequent surgeries, blood loss and tissue/muscle loss due to necrosis was taking a toll on Christi’s body. There were moments when her family and doctors agonized on how much more should she take and whether amputation at the hip would be best. She has lost over 75% of the muscles in her thigh and all of her hip flexor muscles.

Turning a corner

The damage was done and sometime around January 23, 2007 the infection was contained, controlled and defeated- no further necrotic tissue was found. By God’s grace, her sheer will to fight and to live she kept her right leg. Focus and attention were now placed on Christi’s open wounds that were just as gruesome and horrific as any soldier wounded in battle. She was well on her way to recovery but as one can imagine, her wound care was time-consuming, excruciating, exhausting and the threat of a secondary infection was always a fear for us all. The wound care specialists nicknamed her endearingly as “ipod girl,” as the music of Jack Johnson was the only thing that helped make dressing changes bearable. It was now time for the surgeons to attempt to place skin grafts over the remaining viable muscle tissue to close the expanse of open flesh. The skin grafts were a success and with that victory her spirits and ours were lifted. We were just happy to be in the moment, to celebrate her being alive but the journey was nowhere near finished.

Physical Therapy aka Pain and Torture

As Christi’s body healed, it was time to begin the steps trying to function and accomplish the basics of daily living. The forces of gravity were unkind to her, after lingering in a hospital bed for so long her body resisted any physical movement. All the usual suspects were present: muscle atrophy, vertigo, misery and fear of the unknown. It was clear that challenges lie ahead.

Anyone that experiences a devastating illness or life-altering tragedy comes to the point of accepting the “new normal.” In her case, the “pain and torture” of daily PT to relearn the basics was nothing compared to the question in her mind of, “Will I walk again?” After all, medically speaking a functioning right leg was “not viable.” As optimistic as the doctors were, the reality was the basic elements for ambulation are not present. At least that’s what we were told. It is important to understand a little bit about Christi, her nature and personality. With all the beauty a woman can have, on the inside there is so much more. She is funny, smart and witty – all the southern charm and character you can expect from a women from West Texas. As wonderful as all those attributes are, none helped her survive this experience. It was so much more – driven determination, an indomitable spirit to live and an inner obstinate force that drives individuals like Christi to defy all odds. There were many conversations that took place during her time of recovery and her range of emotions brought tears daily. From coping/accepting the disfigurement and scars on her body, to sheer elation and gratefulness of being alive, to seeing our kids for the first time in weeks, to the frustration that PT brings when the body does not react fast enough to progress expected in the mind. Quitting and not walking was not an option, after a few more difficult conversations with herself internally, progress seem to come at faster pace. It was now, February 21, 2007, she had stood and took her first 3 glorious steps. After intensive PT, recovery and walking again became reality, at this point Christi had been in the hospital from December 29, 2006 and was released to go home on March 2, 2007.

To Live and Walk Again

Coming home was a joyful occasion but again surrounded by fear and uncertainty. Slowly as time passed, she re-learned how to adapt to life again, gaining her independence back and being a mom again was very important to her. One by one each task was marked off the list, showering alone, dressing by herself, putting shoes on, small chores around the house, cooking, and finally one last thing to accomplish, driving. It had been seven months since she had driven a car, with the work of a physical therapist she continued to strengthen her right leg enough to push down on a gas pedal. Gravity continued to challenge her right leg and she knew she wasn’t going to be able to move fast enough to drive properly. So, being resourceful, she learned to drive with both feet; left on the brake, right on the gas.

With all the blessings she had received, it didn’t take long for her scars to become horrible reminders of what she had been through. In addition, due to the extensive nerve damage to her leg, chronic pain became ever present and menacing. The openness of her thigh and hip, due to muscle loss made walking a daily challenge. Her limp was severe and pronounced. She arched her back and had to use her entire body to keep in motion. It was tiring process that limited what she could do. All effort to move was difficult- walking, standing, and sitting.

Physical therapy took over her life again, it was pain and torture – three days a week, for two hours on those days. All in all, PT carried on for a total of 12 months to build her strength and to gain any additional functionality back to her right leg and hip.

In her own way she was accepting of new life with her severe limp and scars and she had worked hard to put the devastating illness in the past. Yet, the cold stares of the public and in even in her mind there was the constant reminders of the scars. She wrestled with the guilt of wanting to have reconstruction to help make her leg more “normal” and there were doubts by some if it could be done. The guilt was centered around that it should just be good enough, she won the battle, kept her leg and could walk. To seek anything more, she thought would tempt fate and lead to unintended consequences.

After consulting with her doctors, she came to realize that reconstructive surgery could have a real impact on her mobility, pain management and the core strength of her overall body. The first consult with Dr. Schmid was on February 15, 2008; his complete confidence gave her confidence. The game plan was set. Each surgery was a success and brought forth amazing results-aesthetically and medically.

How Patient turned their disease/deformity into a positive life-changing experience
When the dust had settled and the battle had been won, she had a very important decision to make. How was she going to let this very life altering event change her, for better or worse? It could have been easy to simmer in self pity and the endless questioning of “Why me?” Her soul, self-esteem, the very core of who she was could have become just as scarred as her body. The infection destroyed parts of body and came from nowhere, with no known point of origin. The infection and her miraculous recovery baffled doctors and medicine.

Christi in her own words:

Honestly, the thought of “giving up” never once entered my mind. I am a survivor, a fighter and I just needed a moment to brush myself off and stand. Then I did. To be courageous takes more courage than you might think.

It’s not until you have to dig deep and find the courage to actually say “I can do this, I am going to be ok” that you actually discover who you are. People go through their entire life hoping nothing bad happens, what do you when that bad alters everything? I can only speak for myself but I honestly believe that having endured something so horrible has brought out the best in me. I have definitely learned what I was made of. I have learned that each day is a gift and is one to be treasured. Nothing is to be taken for granted, for in a blink of an eye it could be taken away.

I am still completely humbled when people tell me that my story has touched their lives. I fought to survive against all the odds that were placed against me. It’s inspiring to see people tear up when I tell my story as I fight back the tears myself. I have been asked numerous times if I wished this had never happened to me, and I never really know how to answer that question. There is more than enough about this experience I could have done without but I have also learned so much about life, love and who I am. I do think I am still here for a reason, a purpose. I am much stronger now than I was before. I know what I am capable of, I know that I can get out of bed each day and face it even when it’s not the easiest thing to do. I embrace my life and take joy out of my victories that I have accomplished.

I've been holding out

Yes it's true bloggy peeps, wait is that Right? What do I call y'all anyway? Friends, readers, I like bloggy peeps- but that's just me!

Remember back in June, literally RIGHT after reconstruction when I mentioned that Matt was working on a writing project. Well, it's about to make sense in about 30 seconds. Ready for it, ok here it is.

Dr. Schmid nominated me for the American Society of Plastic Surgeon's, Patients of Courage. I feel very honored that Dr. Schmid wanted to nominate me in the first place. They chose 4 finalist that will serve as ambassadors and represent reconstructive plastic surgery patients at the conference next weekend in Seattle. I was not one of those four chosen, however I was in the top twenty, which means my name will be displayed at the ceremony.
I did receive a certificate that I will proudly display. It's a tangible display of my resilience.

Thank you so much Dr. Schmid for the nomination. It meant a lot to me to be nominated in the first place.

In the next few days I will post part of the submission that Matt wrote. I will warn you now, grab a Kleenex!

On a another note....
I had my final post surgery follow up today. Everything LOOKS fantastic! I walked out of the office and lost it- I was an emotional teary eyed wreck. I have invested so much of my life into the reconstruction. These 3 reconstructive surgeries changed everything for me. It changed my mobility, physical appearance and gave back my self esteem. I don't have to hide behind sarcasm or cynicism because I hate my body, or rather what the NF did to my body.

In this process, I have gotten to know the office staff and nurses and my doctor very well. It was a bitter sweet day. Actually, I about to cry just thinking about it. I didn't even get to say what I want to say to Dr. Schmid because I was on the verge of falling apart and I didn't want to be the "crying patient". This is happy! I go back in one year. Wow, one year!

The part of my inner calf that still grafted can be closed to look like the rest of my leg but it can be done in his office. Which means NO more surgery, no more anesthesia, NO MORE HOSPITALS!! I am so happy I could cry...Oh wait, I have been!