Anxious

Whew! It's been way too long since I've posted anything on here. Sorry about that...I guess there just hasn't been a whole lot going on the past 2 months. There's just been a whole lot of waaaiting...and waiting. I've become super anxious. I thought that maybe I would hear something from my docs since they received my x-rays over a week ago but no. Apparently I'm not healed up enough to get this thing off. I'm feeling ok physically, except for the nerve pain in my thigh. The pain is always there, and it's always annoying. I'm just tired of lugging this fixator around and trying to conceal it (which is impossible) I don't know why I try. The ring around the bottom (foot plate) broke in half last week. I went into panic mode BIG time...crying, freaking out etc. I couldn't walk with one crutch like I've been doing so every bit of independence I had gained since coming home was gone. I had to use 2 crutches again, which was a HUGE deal to me. When it comes to this leg I get SO worried & SO emotional. Servando (one of my FAVE docs) called me and gave me a pep talk. He sent me the piece that broke & dad was able to replace it with bolts & nuts & junk. This thing is made out of aluminum people...and it broke...in half. It was different when something broke on one of my prosthetics because I could just take it off & fix it. This thing is attached to me. Did I mention that? Ugh. Anyway, all is well. It was fixed and I got over it, not the end of the world like I thought. 


Ryan came in last weekend & it was wonderful. :) I love him and I LOVE having him here. We got a dog, a boxer. Our little Boots. :) We had a family dinner with our parents and we both spent the weekend trying to get Boots to warm up to us. She was a rescue so she's a little skiddish. She is PRESH. He went back to Augusta to finish unpacking his things into the rental house he just moved into. The house is beautiful and it's so perfect for us! It's KILLING me that I can't be there with him right now. I need time to move faster...


We also picked up a couch he bought for our house from my favorite couple. ;) Jessica and Michael.  I realized something while we were there. Michael works in the ER so he was all kinds of curious about my fixator (which doesn't bother me one bit because he's a good friend) Anyway, Michael hadn't seen me since this surgery but I had absolutely no idea that he hadn't seen me since my first surgery too, which was a year and a half ago! I felt terrible. I knew that I had been kind of hiding out since I started this but I didn't know that I had been hiding out that long. Obviously it's awkward to go into town and run into people I know who don't know that I've had surgery & am still going through recovery and more surgery, etc etc. I get stuck talking about it for ever and then the next person I run into it's the same thing. It gets really old having to repeat myself over and over and over. So I just don't go out. I did, however make the decision to make a point to not shut my close friends out. They deserved better than that. My close friends have been super supportive, so from here on out I am going to try to make lunch dates & keep them close. :)  


Well that's all for now. I am also going to try to update this thing more often. Loads of love. 


-Julie

I'm HOME!

So now that I'm home I've been trying to learn to use my crutches instead of a walker before I go back to work. I hate being so dependent on other people for help...I'm doing every thing I can to do things on my own. I'm doing pretty good. There is a large foot plate on the bottom of my fixator that kind of serves as the sole of a shoe, I guess. Anyway somehow I managed to figure out how to walk using only one crutch. :D GO me. (I don't know if I'm allowed to do this...but I'm doing it. Ha.)


My last day of physical therapy was an emotional, bittersweet one. I held it in until I had to leave. Hugging my therapist, Emily (who has become an amazing friend) made me break down. We both have personalities that try to be strong...I started to cry. She gave me a quick pep talk & had to turn around before crying too. She had another patient waiting. During the last four months we've shared a lot with each other. Not only was she my physical therapist but she was almost like my shrink too, ha. If i came in one day & something was wrong, she automatically knew & would address it. She made me talk, & not just about how I was feeling physically. I can honestly say she is probably one of the best friends I've had. After seeing her 5 days a week for 4 months, it was really hard to leave & I miss her. She's made a huge impact on my life & I don't think she realizes how much. We've kept in touch since I left & have plans for when I go back to West Palm Beach. 


It may seem strange to become friends with your doctors, but there...it's actually kind of common. These doctors really, truly CARE about every individual that comes through. I swear I've never felt so loved & cared about by people treating me before. It's on an entirely different, personal level. For people who have never lived with my condition, they understand me & that's something I definitely never have had at home. As thrilled as I was that I got to see Ryan & start my road trip home, I was still emotional leaving everyone & all of my new friends. It was hard, leaving my controlled environment where my doctors are always at hand when I need them & everyone around me understands. To leave that place & come home to Bama where I would have to adjust to living HERE for the NEXT 3-4 months was kind of depressing. Not only that but to think that I have to go back to work on Monday & drag this foreign object around on my leg, while people stare & ask question after question makes it worse. I know I'll get through it & it won't be too bad, I've done this before after my first surgery. This time is just different...for several reasons...


If I'm being honest, I don't really like being home so far. I feel trapped in my parents house, every room seems like it's been booby-trapped esp for me. Our house isn't handicap accessible one bit, which makes me require more help from my family when I'm trying to learn to require less. It's cold...and my leg doesn't appreciate it at all. I don't want to get out & I don't want to run into people I know, or people at all for that matter. I can't hide THIS. I'm stuck in maxi dresses again & skirts...except this time I have to cut my clothes to fit around the fixator. I STAY cold. If I happen to find a dress I can wear without cutting it, my fixator sticks out so much that it just looks like a giant tumor growing out of the right side of my body. -_- I can't go tanning, well, because of obvious reasons but also because of the scars. So, even once the fixator comes off I still have to wait a year, which will be time for another fixator. Ha, I'm destined to be pale for the next few years apparently...(It's ok cause spray tan is always a safe option ;)


Something positive-physical therapy since I've gotten home has been easier, just because the lengthening phase is over. Now when we bend my leg back I can actually achieve 90 degrees withOUT yelling. So, the pain isn't as bad...not near as bad. Also, I have a wedding to plan!!! :) With all the craziness in my life right now, I'd say wedding planning will be a great distraction. Ryan is definitely the only thing that's keeping me sane. I'm so blessed to be engaged to such a supportive, loving man that spoils the mess out of me. I don't deserve it. I can't wait to get this thing off so I can start really planning this wedding...& I can't wait to be married to him. ;)

First Post-My Very Long Story

So, where to begin? I was born with a condition known as PFFD or CFD (the new, shorter term-Congenital Femoral Deficiency) Up until now, my condition has been something that I've tried to cleverly hide pretty much my entire life, either by only wearing certain clothes that might conceal my prosthesis, shying away from certain social events or when people asked me why I would "limp" (ugh, I hate that word) I would just tell them "It's a long story." Pretty soon, people would get the picture. I DON'T like to talk about it. However, here I am, talking about it. I even had friends that never knew specifics, they didn't want to pry. I never told them either. I felt ashamed of what I had no control over. It would always take me years to open up to my closest friends & talk about it. I didn't tell my boyfriends' details. I was always afraid of being rejected because of it...for some reason. I know now that, that is exactly what Satan wanted for my life, for me to not live my life to the fullest because of this. That's exactly what I did. I graduated, but I didn't go to college. I could have, but I let this stop me. Now, at this point in my life those are the things that I am ashamed of. I'm ashamed that I didn't shoot for all my dreams. I feel like I've been a terrible example to my sister...or to anyone else my life could have blessed if only I had "gotten out there." Not that I didn't do anything at all. I've worked full time since I graduated. Let's face it though, I can't really move up from any of the jobs that I've had. (I'm getting off topic here.) I was so closed off that my relationships suffered from it. I'd go out with friends, I had a social life but I always let this hold me back. Every guy that found me attractive, I'd find some excuse not to date him. If I ever was in a relationship, I'd still allow my condition to hold me back. I've learned that you can't really have a true relationship if you don't allow other people in. I've grown up a lot in the past few years. 

There was one day, while I was living with my 3 lovely roommates that my sister stayed over. Saturday came & my roommates all went out doing their own thing. My sister got a call from her friend inviting us to go out of town to a waterpark. It was summer, it was HOT & I really wanted to go. She begged me to go. She said we could just lay out, I didn't have to take my prosthesis off & get in the water. I told her no way, it didn't matter if I stayed under the umbrellas the entire time, I knew I would be miserable. I didn't even own a bathing suit because I NEVER would expose myself. I'd be hot & miserable, especially with all of the stares from people I knew I would get. NO WAY. It's too humiliating. I knew it wouldn't be worth it & I'd have no fun at all. She begged & begged me to go until they had to leave. I stayed home, alone. Why am I telling this story? Because this is the start of how I found out about Dr. Paley. I was so lonely & sad that day that I knew I needed to make a decision. I had cried out to God before several times to heal me. A couple months before this, I had prayed that He either heal me or send me a doctor that could help me. (I didn't think my prayer had been heard or would be answered because I was so frustrated when I prayed this) I sat on my laptop, searching my condition. I searched everything I could find. (This wasn't the first time) This day, however, I ran across a doctor that SPECIALIZED in my condition. Keep in mind, my condition is pretty rare. All of my doctors in the past said that my only option would be to amputate. I was that stubborn patient who wouldn't allow them to cut my leg off. How would that have helped me any? I got around just fine the way I was...and amputation wouldn't have fixed the problem with my hip and my knee. My leg was shorter than the other one. Amputate? Heck no. My decision to keep my leg had been frowned upon by all of my doctors...but it's the best decision I ever made. 

I had my consult with Dr. Paley in August of 2009. He was the only doctor to give me hope. He was so positive and confident. He said he could correct everything. I've never in my life had a doctor say that to me, let alone act as if it would be easy for him to fix! I was in shock. I knew he was different than all the others. It would be a long road, & I had a lot to work with, but he could do it. My first surgery to correct my hip & knee was in Feb 2010. The surgery lasted nearly 15 hours. I was in the hospital for 9 days & I had so many plugs and drains in me that I lost count. I was in ICU the first 3 days. My incision starts at the top of my hip and goes down the side of my leg wrapping around my knee. I had to be lifted from my bed to a stretcher twice a day to lay in an oxygen chamber. The first 3 tries didn't work because the pressure in my ears caused too much pain. I had to have an additional surgery just to have tubes put in my ears. It was completely random & completely unexpected. We tried again. Twice a day, 2 hours at a time I spent in that BORING chamber. Sometimes I would sleep, sometimes I would watch TV. The chamber was meant to help heal my incisions. 

I remember a physical therapist coming by the room once a day. She got me to sit up on the side of the bed. We started slow. The next day she had me try to stand up on my walker. When I took that first step up it felt like a knife had stabbed me in the hip. (This was the start of my anxiety) I was surprised at the pain, and surprised at myself for crying over it. I usually handle things really well. I was embarrassed & upset that I couldn't hold my emotions back. I sat back down. I started wearing a brace I had been measured for while I was in ICU. It was bulky & I hated it but it protected my fragile leg. The first steps on my walker were from the bed to a nearby chair. By the time I finally sat down I starting having a panic attack. I didn't know why I couldn't breathe and that made me panic more. I couldn't talk to tell anyone what was wrong, but I could cry. I had to start breathing treatments. 

Another day one of my drains was ready to be removed. It was a long tube inserted at my hip area that went far down inside my leg. The PA told my sister to hold my hand. I didn't expect it to hurt but he pulled it out fast and I yelled. It burned so bad. I started to build up anxiety about my other tube in my side being removed. It wasn't ready yet but I knew it'd be soon. One day when I was being transferred back to my bed from the chamber, mom was there waiting. I was emotionally and physically exhausted. I started to cry, the more I cried I felt the panic start to set in. I couldn't breathe again. I wanted this to be over. Mom finally got me to calm down. The day came for my second tube to come out. I was scared to death. A different PA came this time. He said "Breathe in through your nose & out through you mouth & on the count of 3, it's coming out." Before he could finish his sentence it was out. I didn't feel a thing. :) 

I was finally discharged from the hospital on what I believe was a Saturday. I was feeling better by that time, still fragile but so happy to get out of the hospital. I started physical therapy the following Monday. Geez it hurt. It was a hurt I could handle though, because I knew how great the outcome would be. That's all I was worried about. 

I went back to work after being out for 7 weeks. I was on crutches and still hadn't gotten my new prosthetic. It was scary & I felt awkward. It was weeks before I finally got it...& 4 more months before I came off the crutches. Even then, I wasn't strong enough to walk without limping. It's also really hard to adjust to a new prosthetic. (Not like many people who may read this would understand.) I never really got used to it. 

I scheduled the next phase of my surgeries for Nov 2nd, 2010. This was the big one. Well, another big one. The surgery lasted 5 hours. This time I was actually ready to have the fixator put on. Mine consists of 17 pins that are as thick as no. 2 pencils. They go straight through my skin and into the bones in my femur and my tibia. It's held together by half rings. I'm basically wearing 2 fixators because I have it on the top of my leg and the lower leg. I was given an epidural for the pain like I was given for the first surgery. This time it gave me a wet tap, which meant every time I sat up even a little bit I'd get a migraine. It was awful, I had to have a blood patch to fix it. It didn't work. I had to have another one. I was in the hospital for 4 days. Ryan stayed with me for 3. He took care of me, helped me to the bathroom, bought me goodies when I was discharged & was just overall amazing. I still don't think he realizes how grateful I am to have him. He came down with my sister for Christmas and New Years. As most people already know, he proposed to me on Christmas morning. It was the most absolute perfect day of my life, even with everything I'm going through here...he makes everything perfect. I didn't expect it to happen then, he definitely surprised me. :) I think he was pretty happy about it too. ;) 

I started physical therapy on a Monday. I had been told months before that it would feel like I was walking into a torture chamber. I had done this before though, with my first surgery. I thought I was strong. I went in thinking I just had a higher pain tolerance than the kids I heard screaming. I was confident...and in for a rude awakening. It has been a true humbling experience. Physical therapy lasts an hour. The first 45 minutes aren't terrible...at the end though, is when they put me on my stomach & bend my knee back, pushing it to achieve 90 degrees. (I have 2 pins directly in my knee also) I wasn't expecting the pain that I felt with the fixator & they don't stop pushing as long as my muscles allow them. I yelled out loud, all I could do was yell. If I didn't yell I knew I'd hold my breath, which makes everything worse. I surprised myself but I didn't surprise them. I was embarrassed, I'm 24 years old for heavens sake. I kept saying "I'm so sorry, I'm sorry I didn't mean to yell I don't know what happened. I DON'T yell." They told me I was being ridiculous. They've seen grown men cry & I was in the top 30% of people who were the strongest. Strongest?? I felt so weak. I felt like I didn't know if I could finish this. By the third week I wanted to quit. That's not who I am though, I'm not a quitter...& I've surprised myself at how many times the thought crossed my mind. The process of lengthening my leg during this phase takes 4 months, then another 4 after we stop turning the pins that I have to continue to wear the fixator when I go home. I'm terrified to go back to work with this...

About 2 months ago I had to have an unexpected surgery because the bone in my femur had consolidated, which means it completely healed up & left me no more room to lengthen the bone by turning. Dr. Paley had to take me into surgery again to re-break my bone. Another issue I had was that my tibia (lower leg) was starting to curve because of the placement of the fixator. He decided to take advantage of it & fix both things in one surgery. About 5 seconds after I woke up from the anesthesia my body started to shake uncontrollably. (I didn't have an epidural this time) I felt everything. I had an oxygen mask on & I was crying but I didn't realize it. A nurse wiped my tears & asked me how bad the pain was. "10!!" I could barely talk. It felt like I had been stung in my lower leg by hundreds of bees and walked through fire at the same time. She touched my hand, I tried to hold on but she let go. I wanted to hold something. I asked for mom. They wouldn't let her back. They said I was in too much pain & they didn't want her to see me like that because she would get upset, then I would get upset & then everyone would be upset. They had to control the pain first. ("All I want is someone to hold my hand, please!") That's all I could think of. I gripped onto the bed rail instead. They kept pumping the pain meds until I stopped shaking. I was breathing so fast they couldn't hardly count the breaths. I remember a nurse stating to another nurse that the pain I was in was equivalent to giving birth. I believe her. The break in my femur wasn't painful. When the doctor adjusted the fixator of my lower leg it caused nerve pain. At the time I had no idea why it hurt so much. All of my nerves were on fire...& they stayed that way for 3 weeks. Two days after my surgery I brought up the pain I was still feeling. Dr. Paley said to stop turning pins on the lower leg. (Nerve pain can cause paralysis.) I was almost at our goal of reaching 2 inches in the tibia. I lost a quarter of an inch...but I can live with that, just as long as I'm not paralyzed. He said we would make up for it in my femur.

I've cried so much during the past 4 months that I can't count. I think I've gone through every emotion a person can. Mom has been here the whole time we've been living in Florida. I've cried on her shoulder, she's cried with me...and without me. She finds me alone sometimes crying...& holds me. I know this is hard on her too. She's my mother. Over and over she's said if she could take this away from me & do this instead of me, she would take it. The love of a mother...it breaks my heart. I'd never put this on anyone.

Two weeks ago I started having terrible pain directly in my pin sites (it wasn't the first time) but this time was unbearable. I cried every time I had to clean them. My knee pain was also getting worse. (Keep in mind my muscle has to stretch along with the bone, that's why therapy is so brutal.) The muscles also connect to the knee, pulling and pulling at the joint. A joint which barely has a kneecap at all. It HURTS like nothing I can describe, so I won't try. I thought I had a pin infection again. I'd already been on 3 rounds of antibiotics for it & was on the 4th one. It was only affecting my thigh though, & felt like needles poking through my skin. My entire thigh burned. I told Dr. Paley about all the pain. It wasn't a pin infection. It was my nerves again, they were on fire. I don't know why I didn't recognize that pain, I just knew I was done. He said to stop lengthening now. We've gained a lot of length so far & as more problems start to arise, that's a sign that it's time to stop. I managed to get 3 inches out of my femur. I'm a quarter of an inch away from 5 inches! I didn't care though, I was SO relieved he said to stop. I am so ready I didn't care that I hadn't reached the goal this time. We quit turning pins that day. We'll make up for the length in my next two surgeries. Then I'm DONE.

I have another surgery scheduled for Monday, February 28, 2011. It's a very simple outpatient surgery though, I'll literally only be under for 10 minutes. They are going to take the two pins in the heel of my foot out & maybe some excess hardware I don't need anymore. I hope. 

I know I just wrote a book here practically, but I could have written a lot more. My future posts won't be so long. I just thought it was important to get my story out of the way before I start going on about what I'm doing. I should be going back home to Alabama next weekend. Ryan is coming to help us load up and drive. I sure do love that guy. ;) I hope this all made sense. My condition has always been hard to explain, & now with what I'm doing, people can't seem to keep up. Ha...I don't know why God had me wait this long to do this but I know there is some sort of reason. Most people start this process as babies or young children. I'm late in the game, which makes my pain worse. The crazy part? I was 22 when I found Dr. Paley & at that time he had been performing these surgeries for 22 years. Ironic huh? I often wonder why no one had told me about him all this time. My doctors before sure knew who he was and others like him. I can't dwell on that though. There's obviously a reason I needed to start now...and I'm so very thankful to God everyday that this dream I thought was hopeless is coming true.