Adventure.

"Life is either a great adventure, or nothing" - Hellen Keller
I think everyone needs a little bit of adventure in their lives. No matter how irresponsible it is, just drop everything one day and go somewhere you've always wanted to go, do something you've always wanted to do. Face your fears, let yourself live a little.
Face that fear of flying and not only get on a plane, but jump out of it! Find out for yourself what it feels like to have the freedom falling out of an aircraft with nothing but a parachute that you pray to god was packed correctly. DO SOMETHING!!
Life is short.
Too short.
Don't waste your numbered days with a job that you have to drag yourself out of bed in the morning to go to. It's not worth it.
If you're someone who's always wanted to see Venice, then find the means, & GO! This world we inhabit is pretty big, and there are so many places to see, & experiences to be had. Why are you even sitting there reading this?! Go tour a city or something!!
I guess this is easy for me to say since I'm typing this as I sit on the beach, waves crashing & seagulls cawing.. I know that it's not easy for most people to just get up in the morning & decide to call out of work to go visit Amsterdam..
& Obviously I'm really not someone who's got it all figured out.. But I really just think a little adventure would do a lot of humans some good.

One of these days, you will look for me and I'll be gone. Face to the wind far out upon the sea, that's the direction that I will be. I'll set sail without a destination, just to see where the wind will take me.


Song of the day: "Ships In The Night"- Mat Kearney

Meliora :)

Acceptance

“Letting go doesn't mean that you don't care about someone anymore. It's just realizing that the only person you really have control over is yourself.” 
-Deborah Reber 

I am a few months older, and therefore I am a few months wiser than I was when I wrote the post titled "Que Sera Sera".

5th stage of grief is complete.

When I saw Dr. Bernal for my last clinic visit, he discharged me from the care of the Rheumatology department at CHOP.

With a big grin on his face, he said, "You're doing so well Meg. You finally get it! & I'm proud of you, now you just have to keep doing what you're doing."
And Just like that, the tables were turned. Now that I'm discharged, he's is no longer the one who's leaving, I am. Which for some reason in my mind is a whole lot easier, and isn't sad at all.
Hmmmm control issues much Meg?

In any case, I'm Golden with the whole bye bye Bernal thing. & as an added bonus, I'm nearly pain free! Time to enjoy my summer, and the rest of my life.

In other news...

I found out that my other favorite doctor is leaving too!! As none of you know, I am a patient of the GI department at CHOP. (Long story that I don't like talking about short, I got kinda sick around this time last year & that landed me in appointment after appointment with Dr. R!) She is legit, my bestie. My parents & I both totally love her. & I'm going to miss her a whole lot. She claims that she has left me with a doc that I'm going to really like, we'll see about that.... haha
What really sucks about her leaving is that she finally figured out what's wrong with my stomach right after my last appointment with her so now I have to start fresh with Dr. New Guy.

I found out something new about my RND! For the longest time I've been wondering "Why now?" I mean I had gotten hurt plenty of times as a kid, no real injuries, but the normal twisted ankle here, scraped knee there, the usual stuff that came along with playing with a big brother in the back yard growing up, but I never experienced any sort of pain that was out of proportion to the injury! I even had a crushed finger as a kid! the tip of the bone in my right middle finger was totally crushed, the skin was split open, & it was gushing blood. But I never got RND, they took some x-rays & then I think they just sewed it up & sent me on my way! All I got was a scar. No debilitating nerve pain, so why now? I finally asked this question to a member of the AMPS team at CHOP, & the answer I got made such perfect sense I don't know how I didn't think of it myself! There is lots of research going on right now on RND, and apparently one of the things that they think they're starting to see is that this disease commonly comes out whatever reason in kids that are going through puberty! Of course!!! I was 15 when I had my first surgery! So I think that's likely the answer to the whole "Why Now?" thing.. I'm hoping that through more research, they can figure out the "Why Me?"


More updates...
I have been working as a volunteer for a local EMS squad for almost 6 months now & I really enjoy it.

I'm celebrating my 18th birthday this weekend with my best friend! we're going to go to the aquarium, & if the weather is good, we're going to go down the shore!
 That's about it though... I can't think of anything else that's new with me & I can't really think about anything to write about, sooo goodbye until next time!!

Song(s) of the day:
Everything has Changed - Taylor Swift ft. Ed Sheeran
Autumn leaves - Ed Sheeran




Meliora :)

Positive Vibes

"The only limitations you have in life are the ones you put upon yourself." -Unknown

These pictures sum up my mood this week. :)

I'm in a bit of pain. So what? Why should I let it weigh me down?
I have so much ahead of me in life.
There is no way I am going to let this pain define who I am.
I've been down that road before, & there's no way I'm ever going back.
I'm done with having my life revolve around my pain.
I need to focus on nothing but the positive.
I will not let something as pernicious as RND run the way I live my life.

Song(s) of the day:
On top of the world -Imagine Dragons




Meliora :)














Though it may seem childish, I'm going to personify my pain a bit for a moment.
To my RND,

Sincerely,

Meg

Que Sera, Sera

"Nothing ever goes away until it teaches us what we need to know." -Pema Chodron

"Surrender to what is, let go of what was, have faith in what will be." - Sonia Ricotti

I am a very goal oriented person. I see something I want, and I stop at nothing until I get it. I never take no for an answer and if you tell me I can't do something, watch out.

When I was 14 years old I discovered that I have a passion for science. Not really the whole space & rocks thing, I'll leave all of that for someone else, but I absolutely love biology, chemistry, and anatomy & physiology. At 14 I didn't really know much past eukaryotic and prokaryotic cells, but I knew that I could, & would learn soon enough.
After discovering my love for biology, I associated myself with three people who, unbeknownst to me, would turn out to play a vital role in shaping the path I would take in my future.
The first was a science teacher at the middle school that I was attending at the time. His name is Mr. Gilbride. I had known him already because I had helped him with the animals that he cares for in his classroom in the past. I went to him first because I felt that my thirst for scientific knowledge was not capable of being quenched by the teacher that I was assigned in 8th grade. He allowed me to audit his classes during my lunch period. I did his class work in addition to what was assigned to me, I think he could see that I was hugnry for more, so he gave me even more work than he gave his students. I payed more attention in that class than I had ever paid in any class before it. I could not believe that everyone somehow kept biology a secret from me!
Anyway...
Next came a friend of the family, Rich. At that time, Rich (who is a nurse) had just began driving me to youth group on Wednesday nights at his church. during the car rides I would ask him questions about medicine, medical careers, and just science in general. There was one conversation in particular that I remember rather vividly... We were talking about different medical careers & what kind of schooling they require, and things of that sort; when he suggested that I become a surgeon. I told him I had given it a little bit of thought in the past but I wasn't sure if I knew what kind I would want to be, or if I would be able to handle all of the schooling that is required. He told me that I could do absolutely anything if I wanted it bad enough, and then suggested neurosurgery. I told him that there was no way I could ever be a neurosurgeon, and rattled off a few lame excuses as to why I am absolutely incapable.
By that time we had arrived at our destination and got out of the car. The conversation was over, but I could not get the thought of neurosurgery out of my head. I went home that night after youth group and researched that field of medicine, and every article on neuroscience that my 15 year old brain could digest before I fell asleep from sheer exhaustion because I was up until dawn soaking up as much as I could.

I had fallen in love. I needed more.

A few weeks went by before I had to go to my lifeguard training for the YMCA. The instructor turned out to be a good friend of my family that I hadn't seen in a while. (She worked at the Y when I was younger and taught my sisters and I how to swim. Throughout the process of doing that, she became good friends with my mom.)
Meet Dr. Ami Oristaglio M.D. Phd. (The third, and most influential) Through the past three years she has been my mentor, teacher, advocate, best friend, shoulder to cry on, and the big sister that I never had. She has been there for me through everything that I went through with my surgeries, has been on my butt about school almost as much as my parents, and has always been someone that I can go to for an honest opinion. All while being an incredible athlete, scholar, professor, neurosurgeon, and many other amazing things.
At the beginning of my lifeguard class, she gave everyone a course syllabus which included her contact information in case we needed to reach her for something. I can't remember exactly how it all went down, but at some point I sent her a text message jokingly telling her that I wanted to be her when I grew up. I worded it in a way that went across as a joke, but I had never been more serious about anything in my life. I had fallen deeply in love with neuroscience.
It wasn't long before I found myself standing in her lab watching over her shoulder as she extracted the brain of a perfused rat for her research. Never in my life had I ever seen something so interesting.
Since that day I have acquired many different textbooks from Drexel University on various scientific topics, most have to do with biology, neuroscience, and anatomy/physiology. (Most of which were gifted to me by Ami)
I have read through them all.

Never in my life have I been so eager to learn about something. In my freshman year of high school I took an Honor's Biology course & it was what got me out of bed for school in the morning. My brain had turned into a sponge & I was constantly in search of knowledge to soak up. Sadly, freshman year of high school was also when I was having surgery after surgery, and in a torturous amount of pain. At 15 years old I had decided that I would be a neurosurgeon.

At 16 I was emergency transported to the Children's Hospital of Philadelphia via ambulance. The skills and expertise of the surgeons at the children's hospital are what saved my life the summer before last. Though I am lucky that I was not in need of a neurosurgeon, the care that I received from plastics/ortho made me realize how special pediatric surgeons are.
No matter the specialty, pediatric physicians are god sent. It takes a certain kind of person to be able to do what they do every day. Every time I think about this topic I get all emotional & at a loss for words so I'll just leave it at this.
Those experiences with CHOP, coupled with my best friend Samm's story, (I'll leave the telling of that to her, I'm just making my point.) made me realize just how much I wanted to help kids in the future because
Samm recently fought and beat cancer!

I believe that we are all as strong as we need to be for the things that we are meant to handle in life. & I also believe that people come into our lives for a reason. Samm's Neuro-Oncologist, is to her, as Dr. Bernal is to me. While Samm was going through her chemo, I was going through everything with getting my rnd treated. Throughout this whole time Samm and I talked almost every day. Often times we'd talk about how nice it is to have someone who understands the whole hospital kid life, and to have someone who understands what you mean when you say that your doctor is like your best friend. Samm and I would talk about our doctors all the time. She'd tell me all about Dr. Deblanc, & I'd tell her about my visits with Dr. Bernal. I think it's something that you'd have to experience in order to really understand it fully, but when you're a hospital kid like Samm and I were, it's easy to befriend someone who is both kind to you, and completely understands what you're suffering through with your disease. (I'm not sure how or why, but for some reason, Samm's friendship with Dr. Deblanc, along with my experiences at CHOP made me take my future title from Neurosurgeon, to Pediatric Neurosurgeon.)  a little over a year ago, Samm's Neuro-Onco., got offered a job in a different state. when he left Samm was heart broken. I did my best to give her advice and to comfort her. While trying to help her through losing her best friend, I remember thinking to myself about how lucky I was that Dr. Bernal wasn't leaving. She found comfort in the fact that he would be helping countless babies born with brain cancer. I couldn't hardly imagine the pain that Samm was feeling at the time that this was all happening.

Unfortunately, I feel it now. The pain of losing a best friend has hit me in it's entirety.
Just as Dr. Deblanc did, Dr. Bernal is leaving for another job. I couldn't believe it when I first found out... It wasn't like I could make the person who told me to cite their source... It was information that was only traveling through the grapevine. I was in shock. I think that I went through 4 out of 5 stages of grief in a period of like 20 minutes while talking to my best friend about the news. After thinking about him leaving for a while, I realized that it really doesn't matter because I don't need him anyway... I mean obviously I'll miss him, but at this point, there is nothing that he can do for me that I can't do for myself. If I remember and apply all that he's taught me, then there is literally no reason for me to depend on having him around. I don't know why it took me so long for me to realize this, he's been telling me this same exact thing since August!

 While I was in the RND program, Dr. B. was the person that I turned to for support and advice. I was a complete wreck while in the RND program, both emotionally and physically. I can't remember exactly how often it was, but at least once a week he took pictures of my right wrist. (I'm not really sure why, I guess to watch the progress...? I don't know. Rheumatologists are weird.)
Anyway, He took pictures of my arm every week and when he did, we'd often have a little heart to heart, & I got to escape PT! It was the greatest gift I have ever gotten! & it came at a relatively small price, I had to shake his hand using my right hand (extremely painful) & deal with his lame jokes most of the time haha (Man am I gonna miss them now!)
Regardless of the price, I looked forward to seeing him.
A feeling of relief would wash over me when he walked into the room right before I was supposed to be getting on the treadmill.
To be honest, he's the only one in that entire building that I wholeheartedly trust. I do not trust doctors. Never have, never will.
I'm not sure why, but I guess there's just something about people that want to shove pills down my throat and/or cut me open that just freaks me out... Dr. Bernal is the first doctor that seemed to actually care about me. He is not only an amazing doctor clinically speaking, but he is also a great doctor in that, he seems to be really invested in his patients. I'm not really sure if that totally makes sense... but whatever... I can't think of a better way to put it.

I am going to miss him more than anything. I know exactly how Samm felt when Dr. Deblanc left, and it's not a good feeling. Just like she did though, I feel a little better about it all knowing that he'll be helping kids like me, but I still can't believe that he's leaving! I wonder if he would have even told me about it had I not gone back to see him because I came out of remission...? I guess I'll never know.

What I do know is this:
1. Having Dr. B. in my life for however long, is a tremendous blessing.

2. He was never meant to stay. ( I think he is meant to touch the lives and hearts of many, I don't think he was meant to stay in my life for very long.)

3. He has helped me more than anyone else ever could.

4. I am really happy for his future patients. I hope that they realize how amazing he is, and are able to appreciate him and the blessing that he is.

5. It would be a privilege to see him again someday. (Perhaps at some sort of medical conference once I get my M.D.)

6. I am happy for him.

7. Though I may be losing him being just over the bridge, I am not losing all that he has taught me. & in some weird way that probably won't make sense to anyone but me, he'll never stop teaching me.

For example, my experiences with Dr. Bernal have taught me that I do not want to just be a pediatric neurosurgeon;

8. I want to be someone's Bernal.






Song(s) of the day:

Heart of Love -John Mayer

Safe and Sound- Taylor Swift

Hopeless Wanderer- Mumford and Sons

When I was little, my mom would almost always sing me a song before bed. One of my favorites was a song that her mother sang to her, it's called "Que Sera, Sera" & the chorus went like this:

"Que sera, sera.
Whatever will be, will be.
The future's not ours, to see.
What will be, will be."




Meliora :)







Dedicated to William E. Bernal.
Stay golden.

RND. Feather on the Clyde

"In order to succeed, we must first believe that we can."  -Michael Korda


Doctor Bernal is leaving.

Yes, you read that correctly. He's leaving soon.

Go ahead and shed a few tears over it. I sure did when I found out.

For those of you who have been with me since the beginning of this blog, you know quite a few things about me. One thing that I have made obvious is that Dr. Bernal is my favorite doctor & the only one that I trust. Not because he's nice to me, or because he's cured me of a debilitating disease; but because he is real with me. No matter what I come to him with, I can always count on him not being afraid to tell me what I need to hear.
In most cases what I need to hear, and what I want to hear do not line up; but I thank my lucky stars he tells me anyway because god knows where I'd be if he didn't.

A couple weeks ago I saw him in clinic for the first time since I was discharged back in August. I suffered a head injury a few weeks ago. (don't worry, it was nothing crazy, just a bump on the head) Apparently that injury was enough to cause a huge storm of RND to come and raise hell with the nerves in my neck and back. To be honest, I got scared. I am still scared. Perhaps a little less now, than I was before my appointment with Superman; but still not totally okay with the fact that I am in so much pain. It kinda feels like I bounced back to where I was before I ever met Dr. Bernal. Back when I went through surgery after surgery whilst suffering from this awful disease undiagnosed for two years. During my appointment he asked me a bunch of questions about how I was doing, what I've been up to, and how I was feeling physically. One of the big questions that he asked was "What do you do for fun?" It wasn't until he asked me this that I realized that I didn't have an answer. Not one that he wanted to hear anyway... The past few months have been a crazy time for me. I am the definition of an over scheduled person. I was only home for about four hours last week. (Besides to sleep most nights) Most days I come home, get changed, grab something out of the fridge, and leave to go to the next thing that I have scheduled! My coworkers and professors see me more than my family does! I have gotten myself sewn into this rhythm so deep that I didn't even realize that I don't take any time for myself. I enjoy almost everything that I do; that's why I didn't realize that I am too busy to do anything under the category of "fun". I am constantly in go mode! In my mind, I can't slow down or I'll have too much free time on my hands which means I'm not getting anything done, I'm missing out on meeting new people, and missing out on new opportunities and experiences. Apparently.. over scheduling myself to the point of complete exhaustion is frowned upon by my CHOP doctors. (Bernal wasn't the only one who counseled me to take it easy.)

Anyway... I have decided to take their advice at least until I am feeling recovered from my head injury.

During my appointment with Dr. bernal, he told me a few different things.

1. I need to take time for myself.

2. I am stronger than I think I am.

3. I have to believe in myself.

This pain is bad. So bad that I was thoroughly convinced that there was no possible way that I would be able to take care of treating it by myself. Doing my home exercise program. I went to the appointment thinking that he would take pity on me because of how bad it was this time around.

I was mistaken.

Without going into the boring, clinical part of the visit, I'll just tell you a little bit of what he told me that day.
After the exam which in my opinion, could have been done without palpating my neck and spine so much... (That's where I have my RND now) He asked me flat out, "What are you doing?" I wasn't quite sure how to respond so I just said that I didn't know. He said, " You're running on an engine that has no fuel in it. You're just going to burn out." He went on to tell me that I am trying to do too much. & that the fact that I don't really have anything that I do for fun is no good.
It wasn't until he asked me what I wanted that I realized that even though I hated every second of the RND Program because of the amount of pain that I was in; that was exactly where I wanted to be because of the expertise and support that I would have at all times if I went back into the program. He told me that he didn't think that I needed the RND program again.

If any other doctor told me that I did not require any kind of treatment for a condition because I was healthy enough for it to just run its course, I would have been relieved, and overjoyed. But I just started to cry when he told me this. I felt like he wasn't understanding how bad the pain was.

I told him, "I don't think you fully grasp how awful this pain is right now, like, the RND that came after the hamstring injury that I had this past winter was so bad I could barely walk, but It wasn't bad enough for me to even come in for a clinic visit. I just worked really hard physically and got my head straight so that I could work through the pain and eventually I achieved remission. But this time I bumped my head like two weeks ago, and already it's bad enough for me to consider quitting my job because it's extremely physically taxing, and I just can't handle being in this much pain. I called CHOP to make the appointment with you less than a week after the injury because immediately after it the pain was bad, and continued to get worse each day. I wouldn't be sitting here talking to you if I thought that I could handle this by myself."
He replied by saying, " I know it's bad Meg, I grasp it. As much as I possibly can, because obviously I can't feel your pain. But I do understand that it's bad. But I also know that you're stronger than you think you are. You can't see it right now, because you have it right in front of you, but you can get past this. you have to believe in yourself."
I found these words of advice to be a bit ironic because they're are more or less, the same exact words that I say to my friends that come to me for advice because of their RND, or whatever else. I'm sure that those closest to me are probably incapable of counting just how many times I have told them to believe in themselves. I say it to everyone.

So why does it sound so foreign when it is being said to me?

At the end of the appointment, he gave me the doctor's orders.

1. Continue to see the pain psych at CHOP. (Jen)

2. Stop burning myself out.

3. Do my HEP every other day, and desensitize every day.
(This was a compromise. I looked at him like he was crazy when he told me that he wanted me to do a HEP and desense every day so he said if I promise to desense every day, then I can do my Home Exercise Program every other day.)

3. Have fun.

4. Come back to see him in a month so that he can follow up with me before he leaves.
(I plan to write about this later.. Soo I'm not going to torture myself by writing about it now.)

I was annoyed with him. I felt like maybe I wasn't saying the right words and that was why he wasn't understanding that I really needed his help. I was annoyed at myself for being unable to keep myself from crying. I felt completely hopeless when he told me that he thinks that I can handle it by myself I just need to keep seeing Jen. & to work through the pain physically.

After taking some time to think about everything that was said, I sent him an email last week to ask him a question. Before I got to my question, I started the email with this:

"Yo Bernal!

I wanted to thank you for your advice on Tuesday. Although I don't really agree with about half of what you said,.. I do agree that I need to stop trying to do so much. I am burning myself out and I honestly didn't even realize it until you brought it to my attention. Soo yeah... Thanks. 

I'm hoping that I'll be feeling better by my next appointment with you. I really don't know that it's going to happen, But I am going to try my hardest to make that happen. No matter how hard it is. I've got to try. 

You seem to have a lot of faith in my abilities, So I suppose that I should too!"

As of right now, I'm not going to lie, I'm feeling pretty helpless right now in regards to this pain. I have been trying my hardest to work through it though! I know that it might be an insane thing to attempt, but I still really want to try and achieve remission again before my appointment with Dr. B. or at least to be feeling better by then. Anything's possible! I've seen people come back from worse things than RND, and faster than a month. 

I need to start believing in myself. 

Song of the day:
Feather on the Clyde - Passenger



Meliora :)

Broken Shells.

“Perfectly Imperfect.
We have all heard that no two snowflakes are alike. Each snowflake takes the perfect form for the maximum efficiency and effectiveness for its journey. And while the universal force of gravity gives them a shared destination, the expansive space in the air gives each snowflake the opportunity to take their own path. They are on the same journey, but each takes a different path.
Along this gravity-driven journey, some snowflakes collide and damage each other, some collide and join together, some are influenced by wind... there are so many transitions and changes that take place along the journey of the snowflake. But, no matter what the transition, the snowflake always finds itself perfectly shaped for its journey. 
I find parallels in nature to be a beautiful reflection of grand orchestration. One of these parallels is of snowflakes and us. We, too, are all headed in the same direction. We are being driven by a universal force to the same destination. We are all individuals taking different journeys and along our journey, we sometimes bump into each other, we cross paths, we become altered... we take different physical forms. But at all times we too are 100% perfectly imperfect. At every given moment we are absolutely perfect for what is required for our journey. I’m not perfect for your journey and you’re not perfect for my journey, but I’m perfect for my journey and you’re perfect for your journey. We’re heading to the same place, we’re taking different routes, but we’re both exactly perfect the way we are. 
Think of what understanding this great orchestration could mean for relationships. Imagine interacting with others knowing that they too each share this parallel with the snowflake. Like you, they are headed to the same place and no matter what they may appear like to you, they have taken the perfect form for their journey. How strong our relationships would be if we could see and respect that we are all perfectly imperfect for our journey.”  - Steve Maraboli

I am a Jersey Girl born and raised!

(Some people, mostly those who are more familiar with other places around the country/globe may argue that the Jersey shore is not as great as we NJ inhabitants believe it to be. For those people I have a very special hand gesture...)

Salt water has run through my veins since birth. Almost every single childhood memory that I can conjure up is a sunny day at the shore with my mom, and that is where most of the photos of my early years were taken. I grew up with sand between my toes, saltwater in my hair, and shells in my hands. As a child I would search  for shells with my mother and aunt Diana (Technically she's my mom's best friend... but that's irrelevant) on a regular basis. I'd pick up any shell that caught my eye and get upset when my mom told me I couldn't keep the broken ones. (This was necessary because no doubt if left to my own devices, I'd have more shells than I could ever carry) I remember sobbing when the tide washed away a shell that I wanted before I could get to it. In her efforts to console me, my aunt would say that the shell would be back some day and that I would surely get it then. Somehow this imaginary rain check agreement between myself and the lost shell calmed my worried five year old mind and I continued on with my search. 

Now, as a young adult, I still go down the shore as much as humanly possible because it is my escape. Even when the feeling of sand is nearly unbearable against my RND flared skin, I still never pass up a trip to the beach! I strongly believe that everyone needs a place to be able to refresh their minds. Not necessarily the beach, everyone's different. But I think a little peace and tranquility would do everyone some good. Especially those suffering from RND.

During the winter time, if/when life gets a little chaotic, my mom will occasionally decide to take a spontaneous trip to the shore. Sometimes at 1am! It is like a breath of fresh air to the soul. 

Anyway... 

A couple of weeks ago, my mom and I decided to take a trip down the shore together (During the day) It was the most refreshing experience I have had in a while. Though I still go to the beach quite a bit, it has been a very long time since I have gone with just my mom. Since it is still the off season, we had the entire beach to ourselves and we were able to just walk in the sand together and look for shells. I noticed that the majority of the shells that I found were broken. but I also noticed that those same shells were some of the most beautiful shells that I have ever seen. I sat on the sand for a little while and just watched the waves after we finished our walk. I just sat and contemplated a lot of things; one of which being, the broken shells. once intact, and part of a living creature, these shells made their way from wherever they were when the sea creature they were a part of came about. Throughout their journey they got knocked around quite a bit by the tides, other animals, etc. the ocean chipped away at them as their made their way to the shore of Cape May NJ. 

Much like us and the trials that we suffer through during this life. Whether it be RND, or anything else that life can throw at a person, just because a shell may be broken, doesn't mean that it isn't beautiful.

I think that often times, the people who go through the most obstacles in life, are the ones who try the hardest to seem like they are perfect. Even thought the reality is that we are perfect only in our imperfections.

Song(s) of the day: 

Clarity- John Mayer 

Beautiful disaster- Jon Mclaughlin

Meliora :)

Dedicated to M. McCloskey

                       

RND. See the light.

"She's a mess of gorgeous chaos, and you can see it in her eyes."

"Sometimes the healing is in the aching."

"One day in Retrospect, the years of struggle will strike you as the most beautiful." - Sigmund Freud

"If you want to fly, give up everything that weighs you down."

     Sooo someone decided to make today the "unofficial RSD awareness day" Kind of ironic because 3 years and 4 days ago, at around 7 am, I was on the operating table for the first time. That surgery is what brought this disease into my life. RSD is rated a 45 out of 50 on the Mcgill pain index. That is above cancer, childbirth, and traumatic amputation.
     When I went to The Children's Hospital of Philadelphia for treatment of my RND, my doctor asked me to describe to him how my RSD pain feels. The only way that I could describe it was the following: "Take a cigarette lighter and light it, keep the flame burning for about 30 seconds, then let the lighter go out and immediately push the top of the lighter (where the flame comes out) onto your body part of choice. Then, in addition to your burns, you have to replace your clothing with barbed wire wrapped around your body, and push the spikes into your skin to simulate someone brushing against you, shaking your hand, or giving you a hug. " I say that this comes close, but it is not exactly like RSD, to be exactly like RSD, that constant burning and stabbing pain in response to touch, change of temperature, or movement, has to be felt all the way down to the bone.The entire body part has to feel that intense pain at the same time. Now imagine that pain being there constantly, sometimes for hours without letting up even the slightest bit. Only then will you have a decent understanding of RSD pain.
      For those who have no idea what the heck I'm talking about, RSD is a chronic neurological syndrome that is characterized by a severe burning pain that is often described by patients as feeling like they are on fire. There are pathological changes in the bone and the skin, such as bone loss, and shiny, hairless reddish purple skin. Many RSD patients have excessive sweating all of the time in the affected area(s). The tissues of the effected area(s) swell. Most have an extreme sensitivity to touch (allodynia). Something as light as a breeze can cause excruciating pain. Even wearing clothing over the affected area(s) can be painful. This last symptom can also cause people with RSD to pull away from the ones that they love. Touch is a sign of friendship and love. Many people can’t understand why you are constantly pushing them away and asking them not to touch you no matter how many times you explain why! Why? Because to someone with RSD, touch is extremely painful!
     Anyone can get RSD! It is more common in women than men and the number of pediatric cases is on the rise. One of the biggest challenges that the RSD patient face is the lack of proper understanding and education of pain in the medical community.
     The loss of employment, social structure and family life are all struggles that the patient with RSD may be faced with. One of our biggest battles is that of getting treatments covered by health insurance and workman’s compensation insurance.The inability to get insurance companies to recognize and pay for a multidisciplinary treatment team, is a challenge in and of itself insurance companies don't always understand the importance of five weeks in a treatment program for RSD, but they do understand that it's not cheap, and in my experience with friends that had trouble with their insurance companies, they won't hesitate to cut you off!
     RSD is a malfunction of part of the nervous system that usually develops in response to a traumatic event such as an accident or medical procedure. A minor injury such as a sprain or a fall can also cause nerves to misfire sending constant pain signals to the brain. There is some sort of disconnect in our nervous systems that researchers don't quite understand yet.
     I suffered from this disease undiagnosed for two very long years because of lack of awareness. Although those two years were the hardest years of my life, I would not change a thing about them because for better or for worse, it has made me into the person that I am today. Without going through the things that I went through, I would not have met my the amazing people that I have fought alongside throughout the process of getting through this trial in my life. I love my CHOP family soo much, and I can't imagine my life without them! I saw a news article today stating that CHOP is the number one pediatric hospital in the nation. I know, without any statistics that this is true just from my past experiences and knowledge of the staff there. CHOP saved my life, and then later improved my quality of life so now I am once again a normal (well... relatively normal) healthy teenager, with a long life ahead of her thanks to them! What more could I ask for?

I know that this is the hardest thing in the world to go through. but you are never alone in this. I am always here for any RSD angel that needs a listening ear. Remission is possible. You may not achieve it tomorrow, the next day, or even the day after that, but you have to carry on and believe that though you,your parents, and even your doctors, may not know when, you will eventually turn a corner and see the light at the end of this seemingly endless tunnel. I believe in you. But what can I do aside from letting you vent, and writing these posts that I'm not actually sure anyone actually reads...? You have to believe in you.


Song(s) of the day:
Ghosts That We Knew - Mumford and sons _(for an RSD sufferer deff! and for anyone else too!)
Where Are You Now - Mumford and Sons

Meliora :)

240 thousand miles.

However long the night, the day will break. -African proverb

It's been a while since my last post.

I'm terribly sorry if my absence from writing has dissapointed you as some of you have expressed to me that it has. I have been very busy these past few months. I've got so much to tell you! My summer was amazing! I hope that yours was also.                                                                                             This past summer was the best of my entire life so far! 


I worked at the local pool as a life guard over the summer so I had some money coming in which is nice to be able to say, but the reality of it is that all of the money I made went straight into the bank & I won't see it until it comes time to buy either a car, or pay for college tuition. While working at the pool I met this guy. His name is Ryan & I get butterflies every time I hear it. I have never met anyone quite like him. I really like him a lot & that actually kind of scares me.. I feel rather vulnerable because of it. But whatever..

 I had the pleasure of meeting his family to get acquainted with them exactly one day before he left for  U.S  Army basic training. I miss him terribly, a letter from him makes my entire week. In my last letter I told him to look at the moon every night at 2100 hours. So, every night,  at that moment I do the same thing in hopes that, he is too.  I simply cannot wait to see him again! He is the best & you should be jealous of our complicated; yet adorable relationship. Oh & did I mention his family is absolutely awesome?! I love his little sister as if she were of my own blood.  We have a lot in common so we have become good friends in Ryan's absence. 

I don't think that Ry knows about the past 2 years of my life though. I closed that chapter of my life about a month ago when I was discharged from the care of both, Dr. Bernal (My rheumatologist) & Dr. Chang (my plastic/ orthopedic surgeon). I am now completely pain free & I feel amazing. I can finally live my life again! It feels great to be discharged now I can move on from that part of my past & not be forced to have to keep revisiting it because of follow up appointments. Perhaps I'll tell Ryan about it all someday but for right now, this is where the story will live. Don't ask me about my scars. I  do not wish to tell the story that lies beneath them again.

I know that I promised to write about the treatment that I recieved for my RND. I wrote a good portion of what I had intended to post and then realized that I was not moving forward with my life. How will I achieve any goals or start anything new if I am still focusing on things in my past?
My RND could come back at any time, as there is no cure & being newly pain free only means that I have entered full remission. However, though my RND & everything I have gone through has made me stronger, taught me to persevere, & has helped make me into the person that I am today; this disease does not define me. As I tell fellow RND patients, "RND is a Disease, not an identity."
I did not delete what I have written & perhaps I will finish it someday. But that day is not today.

Although I hate this awful disease, I do have it to thank for me getting into college at 17 years young. I applied to a special program at a college near me. In which I will be recieving a degree and my diploma at the same time. When applying to get in I had to write three essays. All three basically had to do with things that you have suffered though & have overcome. I of course told about my 
countless hospitalizations & got in. Desperate times call for desperate measures & I sure was desparare to get accepted into this program. 

I've let my past go past & I'm better for it. I'm letting go of the thoughts that do not make me strong and I believe this can be the same for everyone. Don't dwell on things that you cannot change. Just live your life.

Long live living in the moment.

Song of the day: living in the moment- Jason Mraz




Meliora. :)

An Ode To Rainy Days

"The great thing in this world is not so much where we stand, as in what direction we are moving."- Oliver Wendell Holmes







Alone on a rainy evening

Alive.

Awake enough to sit on the windowsill of my hospital room.

watching the people four stories below,

Longing to be amongst them.

A woman dashes out of a building across the street and gets into a cab, soaking wet from the raindrops she couldn't dodge.

A man steps into a puddle.

Counting the number of black umbrellas..

Interesting how some of them react.

Some don't seem to notice the rain.

Others prefer the warmer, brighter, alternative.

The existential moment that follows the experience.

When your life is saved.

To breathe another breath.

To take another step.

To dance in the puddles during a rainstorm.

A new appreciation.

A realization that,

The raindrops falling on your skin during a storm,

Are a privilege. 


I had to write an ode for my literacy class in school. Running low on ideas, I took an excerpt from my post "RND. My Story, About My Pain, Through my eyes" and I changed it around enough to make it into an ode!
I'm not really a big fan of it. In fact I think that it is a bit mediocre but I do hope that you appreciate and perhaps even like it.


Song of the day: It's all understood- Jack Johnson 


Meliora :)

RND. Meliora

If it doesn't challenge you it doesn't change you - Fred Devito 

Meliora.

(The word I put at the end of almost all of my blog posts) when translated from Latin to English means "Ever Better"

( Meliora also happens to be the motto of my favorite university.) 

Up until now almost all of my posts have been centered on me complaining about what I have been going through with my surgeries & my RND. 

Today, I am pleased to announce that I am Ever Better. Physically, mentally,spiritually,emotionally, and pretty much every other "ally" word you can think of. 

I am loving life in every way, every day.

My amplified muskuloskeletal pain has receded from my left leg, left arm, right leg, jaw, scalp, left ribs, stomach, AND MY RIGHT ARM!! Now the ONLY place that I have my RND is my back! The pain level has gone down from a constant 15/10 to a 7/10 at best and a 10/10 at worst! to a normal person that my still sound really bad still but to someone who has had, or is familiar with RND; that is great progress!

I am on cloud 9 right now. 

I can't remember the last time I felt this good.

I was finally able to do what Dr. Bernal (Who by the way, has read my blog! But no offense to him, I can't wait to stop writing about him. I am just tired of talking about him & I feel like I'm wearing his name out! I am just more than ready to close this chapter in my life.) has been wanting me to do all along. That is,to channel my stubbornness into getting better.

It first started with me having a change of heart when some sense was finally talked into me by a friend. Then I started to do my home program with her every night over Skype and I was running every day. her support really helped because she knew just what I was going through. Then I started to see improvement. my pain levels started to decrease and I started to get only deep touch allodynia in my right leg which was one of the places that always hurt the most. That was the point where an hour long home program wasn't enough anymore. I needed to do more. I needed to do the RND program again.

Not literally. I think I'd die if I had to do that again. (I'm still in the process of writing about it.)

Every day I would come home and do OT and PT from about 2:30pm-8:30pm. as soon as I started to do this routine I started to have less and less pain!

Today I went to see Jen. (The psychologist that they made me see in the program.) I still believe that psychology is a load of bull crap & I consider psychologist to be fake doctors.. But I don't really have much of a choice but to see her once a month just to check in until my RND is in complete remission. otherwise I'd receive yet another lecture from Superman (Dr.B.) honestly I don't see the point in it because I did today was tell her about prom.. 

wow I can totally see how this is going to help me... There is literally NOTHING to talk about. I don't have any secrets and she has read my blog sooo whatever...

Anyway... I saw her today & we talked about prom and other random things like that. (I am totally rolling my eyes as I type this.) 

After my appointment I had to take care of a small matter of business with one of my doctors that you guys don't know about yet. (In my absence from writing I was really sick & back in the hospital twice. there was a problem with my stomach, liver, and head. No worries though I'm fine!) Once that was taken care of I was off to go visit the RND team!

I was already told that Dr. Bernal probably wasn't there today by Jen but I was still really hoping that he was going to be there.

 Reason being, until this morning I had not told a soul that my wrist was pain free yet because I accidentally made the same promise to two different people. 

(I promised a friend of mine and Dr. B. both that they would be the first to know when my right hand became pain free so I planned on telling them both at the same time by texting my friend about it as I told Dr. Bernal.)

 That unfortunately did not go as planned because much to my dismay,

 I found out that he is on vacation this week! Just my luck! 

Last time I was there I missed seeing him by a matter of minutes because he came to find me a few minutes after I left to go to another appointment I had that day. I didn't find out he came looking for me after he was told I was there until I returned about an hour and a half later and by then he was already gone.

Then this time I find out he it thousands of miles away! 

Great.

 I was really looking forward to surprising him with my progress! 

(The last time I saw him, I think that he was disappointed in me.)

Since he wasn't there I told every one else! 

(I had to!! I couldn't keep that from them!)

 Everyone was really happy to see how far I've come! It  felt really good to be able to see them again. I got to see and spend some time talking to Dr. Sherry today! That was 

GREAT! 

When I was in the RND program, Doctor Sherry

 (My head Rheumatologist, Dr. Bernal is his partner)

 said that even though we weren't in school, that doesn't mean we should stop learning! So everyday when he saw us he would write a fact on our arm (or leg depending on what had RND the worst because as I've come to find out, a Pen on your skin when you have RND, is really good desensetization)

*FACT: Dr. Sherry only uses purple pen on anything and everything he is legally allowed to use purple pen on!   

He also danced with us everyday too! Although I HATED these things while I was in the program because of how much they hurt, now I really miss doing them everyday with him. 

So today when I saw him he quizzed me on some of the facts that he taught me in the program. 

Q "What are the thousand years of Rome?"

A"500-500"

Q" What is a hyperbole?"

A " I have told you a million times what a hyperbole is!"

Q "What time is it?" (As he reaches out hands signifying that it is dance time.)

A "It's dance time!" 

*Right foot out, Left foot out, Twirl, Twirl. 

These things are the things that I miss the most from the program. (Aside from my heart to hearts with Dr.B but those were almost always really serious. Almost all of my memories with Dr. Sherry are full of fun and quirky things that he would say and do.

There was one of the facts that Dr. Sherry taught me in the program that I couldn't quite remember so after we danced I asked him to teach it to me again. 

He was glad to take out his purple pen and write the zero factorial on my right forearm. 

3x1= 3x2x1=6

5x1=5x4x3x2x1=120

0x1=1 because of the equation X / Yx1

Thanks Dr. Sherry!!

I told Dr. Sherry all about becoming pain free now and about the changes I made to get to this point and he said that he was really proud of, and happy for me. That means a lot to me to hear that from him.

Dr. Sherry is known world wide for diagnosing, and treating Reflex Neurovascular Dystrophy. 

Without going through his program at CHOP I truly believe that I would probably have had my total body RND for the rest of my life. 

I am really glad to have had the opportunity to speak with him today. Especially for as long as I did! 

He is a busy man! Time with him is coveted.

As I said goodbye I looked him in the eye and said "Thank you for all you have done." 

He said " You are very welcome."

I gave him a hug goodbye and when I let go I said,

"Thank you for giving me my life back."

After he wrote the zero factorial on my arm I asked him if I could write something on his arm. 

He unfastened he wrist cuff and rolled up his sleeve on his right arm.

I took a purple pen from his shirt pocket and wrote, in purple pen,

Meliora- Ever Better.

Because thanks to Doctor David Dan Sherry, I am. 

Song of the day: Details In The Fabric - Jason Mraz 

Meliora :)

RND. Nothing to say.

"Either you run the day or the day runs you." - Jim Rohn

I don't feel Like myself today. I just feel kind of... Out of it...
I am in a lot of pain as usual, but it's more than that.
I feel like this might be due to the medicine I have started taking to help manage my A.D.D and A.D.H.D. It just feels like my normally outgoing personality has just left the building for the day. I didn't even speak to my friends at school today. I had nothing to say.
I was doing ok until I woke up this morning. This week has been great for me. Sunday was really good. Monday was great, I got to spend time with my best friend and I treated myself to a pair of extremely overpriced shoes because I was able to put my right heel on the ground for the first time in a while Monday which is something I have been working really hard on. Tuesday I got my phone fixed after 3 weeks of not being able to use it. And then Wednesday came along and ruined my vibe!
What the heck Wednesday?!
The fact that I am stressing about school probably isn't helping matters either. My grades are terrible and the marking period ends next week so there is NOTHING I can do about it. Due to my extended absence this marking period and last marking period my teachers have less grades for me. This means that every assignment I do (or don't do if I forget) majorly effects my grade. My grades Were bad before I went into the RND program at CHOP too though.
This is mostly due to the fact that I was absent even when I was there.
Thinking about it now, I can almost see her. The girl struggling to deal with her own body. She sits with her head on her desk so no one will see that she is trying not to cry. Occasionally looking up both to try and distract herself from the pain and to try and at least figure out what the topic of the lesson is. Everyone can see that the look on her face shows the sheer agony she is in, and the exhaustion she is feeling because she hasn't slept through a full night in two years unless she was sedated. It's obvious when she gets up to limp to her next class before the bell rings so she can beat the crowd. Passing the hall monitors who pity her. Trying not to cry because of the pain she is in.
She's tuning out the world.
Focusing only on getting through the day without screaming and/or crying.
Focus.? What's that?
I went to school for attendance purposes & that's all I got out of it. I received a check next to my name marking me present.
I like to think I'm pretty smart. My grades don't show it,  but I am a fast learner and a hard worker. But going to school before I went into the RND program; The former me would, Limp to class; hold in screams and tears; take a seat. Look at the board briefly before putting her head down protecting her right arm from anything touching it by cradling it with her left; listen to as much as she can tolerate; leave before the bell. Repeat about 8 times; then go home to her room to try and rest.

That's not exactly the formula for A's.

Now that I'm back and better able to deal with the pain I have it is easier to focus but because I haven't been in school for the majority of the marking period, Time is running out and there is NOTHING I can do.

The stress of being a high school student is getting to me. For the first time in 4 years (I had ankle problems before everything with my wrist.) I am in school with no physical accommodations and I am actively participating in class, doing homework, DOING GYM CLASS, everything everyone else does. I am just starting to experience what my peers have already been doing for a while now. I have been thrown into this pool barely knowing how to float. Everyone is waiting to see whether I will sink or swim.
I feel like I'm drowning.

Last year was worse though.
I was not diagnosed with RND yet so no one knew why I was in pain including me. I was in and out of surgery all the time and I was on Vicodin almost constantly just to keep everything at bay. It obviously didn't help the nerve pain but it helped the surgical pain a bit. But due to the fact that I was under the influence of this medication, I honestly don't remember hardly anything from last year. I'm not sure I even remember what courses I was taking.
I'm not sure how I passed either.. I know it wasn't by my doing though.

Tomorrow is a new day though!

Hopefully it will be a better one.  I am supposed to be meeting with the head coach of the SJRA (south jersey rowing club) and I am really excited about it because now that I am out of CHOP I want to do something I have never done before and I have wanting to try rowing for a while and so now that I am physically able I'm going to! I hope that tomorrow is a great day.

Song of the day: Candle Light - Imogen Heap


Meliora :)

RND. Memories.

Someday...








My RND, will be nothing but a memory.
















Song of the day: Many The Miles- Sara Barielles

Meliora :)

RND. A Change of Heart

"Pain is weakness leaving the body." - U.S. Marine Corps.

“It's so hard to forget pain, but it's even harder to remember sweetness. We have no scar to show for happiness. We learn so little from peace.”
 -Chuck Palahniuk

I had what well may be a life changing experience this week.
A sobering experience.
I was yelled at by my best friend.

Now, I know it may seem odd, but this was a great thing, which came at just the right time.
Most teenage girls probably would have gotten mad or upset with their friend, have an argument with them, and then they would not speak to each other.
Instead, I am happy.
Thankful even, that she was able to be blunt enough to get her point across, in such a way that it could get through my thick skull.
She had to reprimand me in order for me to finally open my eyes to the fact that I was wrong.
She and I are now closer than ever before.
After six weeks of people trying to tell me some of the same exact things she said to me and I was too stubborn to listen...
(One in particular did a great job telling me exactly what I needed to hear. He said all of the right words at perhaps exactly the wrong time.
I listened to everything Dr. Bernal said to me and still remember everything, but I wasn't ready or willing to apply hardly anything he said..)
I think I'm finished fighting those who are trying to help me for the most part now though.
I'm pretty sure the act of me stepping out of my own way is long overdue.
I'm not going to say the exact details of the conversation that I had with my friend, or who she is because quite frankly it's no one's business.
But I will say to everyone at CHOP who may read this and has tried to help me by telling me to do my home exercise program, and various other forms of advice and council. Both patient's and staff.
I'm sorry I was so stubborn. I see now that you were only trying to help me. I love you all.
I am now going to try my best to listen to, and apply the things you have told me with the help of my best friend whom I'm not sure how I'm not related to... (I know, I know, "It's about time Meg!!")
Everyone has to be ready for it right? It just took me about nine weeks for me to finally accept the fact that it's time to change.
Is it too late?
I hope not.
It would be nice to have my life completely back.
I miss myself.
To everyone who has worked with me (and put up with me) in the CHOP RND program, I love you soooo much. Thank you for all that you have done for me.
And thank you T.K.H for yelling at me when that was exactly what I needed, and for always being there for me. You have helped me more than you will ever know. I love you so much sis!

Song of the day: For Good- Wicked

Meliora :)

Brave souls, lost.

Tears stream Down my face as I watch the flag being unfolded and laid on top of the casket. Such a brave man. Gone from this world. I gaze out the window watching the cars that pass by in the lane beside us in the oncoming traffic as we drive from the church to the cemetery. Passing through red lights, Lucky us.
A string of cars with flashing lights in front of us and behind. Anyone in the area watching the funeral procession knows what's about to happen. Perhaps some can relate to us and what we are feeling right now as we are about to lay his body to rest.
Driving through the large graveyard to the predetermined spot.
The servicemen standing by the hers saluting the deceased veteran as his family members carry the casket to the gravesite. Taps is played to Honor Their fellow soldier. Such an emotional moment, watching as the members of the Honor guard remove the flag from the casket, and fold it in a precise pattern.
I can't tell if it is because they have been trained extremely well, or if it's because they are they extremely routined, but they are good at their job. Whether this is just business for them or not there is no mistaking that the look on the soldier's face as he hands the neatly folded flag off to the widow, is a look of contrition at this final notion of respect towards the deceased and towards the mourning family and widow. I don't think anyone wants to be the person who has to do this. It's so final, so upsetting.
He tries to hold back his tears. Very typical for a man in his position. One last salut and they march back to their car. Never to be seen again. Their job here is done and they leave us here to mourn our loss.
I stand with my parents and my sisters and a feeling of numbness washes over me. I don't know what the priest said because I have tuned out the world once the impact of the loss has finally hit me. He is never to be seen again in this lifetime. Gone. But not forgotten.  Who could ever forget him?
With the final act of a single rose being placed on the casket, everyone walks back to their cars after comforting hugs are given.  Why do we have receptions after funerals? To spend time with those you haven't seen in a while? To reminisce about the late family member? Probably both but it seems too soon to laugh about anything.
There's always something to have regret about at a funeral. I wish I never said that, did that, went there..
Personally, I just wish I got to spend more time with you.
RIP Master Sergeant Percy Goody. You will be missed. We love you and we will never forget you.

Song of the day: Waiting on the world to change ~ John Mayer

RND. New beginnings.

"Tattered and torn,
we begin to reform." ~Megan Watts

I left the RND program today. (I'll write about it later.)

Everything that I have been through with my health has made me into the person that I am today.

I am not my pain.
I am finally beginning to realize this.
The hard part is...
I just don't know who I am without it. When you have Physical pain for as long as I have, it's hard to remember/imagine what life is like without it. It's kind of what holds me on the ground.
Being a teenager, life is full of changes.
moving through my life, there's not much that stays the same for long.
Except for my pain.
That's always there.
Don't get me wrong though, it's not that I want this pain.
Having RND really sucks.
But the concept of no longer having pain is a little hard to swallow.

"Many of us spend our whole lives running from feeling with the mistaken belief that you can not bear the pain.
But you have already borne the pain.
What you have not done is feel all you are beyond that pain." - Kahlil Gibran

I think it's natural for us humans to have a fear of the unknown. So I know that I'm not alone in that.
But could it be true that my fear of not having this horrible pain that I now have all over my body, is actually what's keeping it around?
Dr. Bernal (My Rheumatologist) Seems to think so.
He and I have had conversations on this very topic and he has made some excellent points. But my stubbornness and quite possibly, my pride make me want to ignore his council.
Although there is a large part of me that worries that he could be right.. That maybe talking to someone could actually help me. (ugh I can't believe I even said that..) I worry that maybe if I let my hate for psychologists & discontent with letting someone influence & coax me into something that I don't want to do, will I really be in pain for that much longer?
I am the type of person who, if I don't want to do something, I Will NOT do it. But I have tried my best to set that aside and do what my Doctors, PT's, & OT's have told me to do for the most part while going through the program.
But I feel like if I let Dr. Bernal win this arguement, if I cave and admit that he's right & I need to talk to someone & do it then I'm giving up the very last thing that I have control over.(I have control issues too..)
I know that he knows what's best for me but I don't know what to do right now. Leaving the program today was/is a really scary experience. Leaving the support of the patients, (The only ones who truely & completely understand my pain) doctors,PT's & OT's and going home permanantly is terrifying. Especially because I expected to be pain free when I left the RND Program and I'm the polar opposite of pain free. I don't know what to expect going back to school, having to tell people that yes, I am no longer in the hospital but I am still in a lot of pain. I can't expect them to understand. In fact, I envy their ignorance.
(maybe I just wont tell them...)
The only people who do are those in the RND program.
I am also horrible about doing home exercise programs. I won't do them. I can't bring myself to inflict more pain on my body in my own home. I can hardly do it at the hospital without the therapists yelling at me to keep going and push through the pain.
This should be interesting.
I need to work on not compensating so much because of my pain. I have a strong feeling that if I show up to my one month follow up with Dr. Bernal & I'm not walking correctly and/or using my right hand properly, I'm going to be in a bit of trouble.. Him telling me that in similar terms lets me know I'm not wrong.
I can't go back into the RND program though. Even though I don't feel like I am ready to have left it yet, now that I'm gone. I'm gone. It's going to take a lot if they ever want me to go back in and do that again. I honestly don't know if I would even be capable of doing it a second time. So I really hope I am never in a position where there is even a possibility of returning. I will go to my follow ups and possibly go talk to the patients there eventually if I ever become 100% better. (I can't exactly tell people that the program works if it hasn't totally worked for me..) But I don't think I would ever go back in even if it's needed.
I told Jenn (the psychologist that I was forced to see throughout the duration of my stay in the program at CHOP) flat out that I was NOT going to be seeing her as an outpatient & once I leave the program, that's it. No more. & she accepted it but then she made me promise her I would possibly reconsider if I am not doing better with my pain in a month. (I doubt that's going to happen though..) but with the things that Dr. Bernal has recently said to me...
I just don't know...
I think the thing that he said that made my position kind of waiver after telling him "absolutely not" at the suggestion of me seeing Jenn as an outpatient, was him responding to me saying "no." with the statemtent
"Well then I hope that you enjoy being a pain patient." I'm not sure why exactly but that was the one sentence that changed me from denying it even being a possibility.. To wondering if maybe he is right when he says "You are trying to finish a puzzle that has pieces missing. This is the last piece to the puzzle, this is what's going to finish getting you better."
A convincing arguement to someone who is desperate.
While I may be holding on to my pain, I'll admit he is probably right about that because I'm probably lost without it. But getting rid of it is also what I want so desperately to do. There is nothing I want more for myself than to be pain free.
I really hate it when people are right. So I hope he's not. But I have a feeling he is. (Such inner conflict!)
Whether he is or not.. What am I going to do about it? I'm not sure. Will I continue being stubborn and self destruct... Or will I cave in and listen to him? I guess only time will tell. (If you haven't noticed, I am pretty self aware. I can call myself out on things and notice behaviors and tendencies that I have. But at the same time... Noticing them, and changing them apparently are two different things because I seem to be incapable of accepting and doing what may be best for me.)
A few of the patients in the program and I have decided that Dr. Bernal looks like super man.

I wonder if he has the capacity to save me from myself? I guess that's up to me though. He has done all he can and has done more than keep up his end of the bargain. Now it is my turn to take what he, Dr. Sherry (his partner in crime), and all of the therapists have taught me and use it to help myself get better the rest of the way.
When I first met Dr. Bernal, he said something that has always stuck with me, and I think about often. He said "Don't ever lose your sense of humor. Once you've lost that, you've lost everything."
I think that I remember this well because it is something that I have come really close to. He couldn't have been more right if he tried. There have been times where I have started to completely shut down because of the amount of pain I was in. I have been in situations where I was just tired of living. I have told my mom on more than one occasion that if this is the way that I have to live my life, I don't know if I really actually want to live it.
I have come close to losing my sense of humor and thus, losing everything, as Dr. Bernal said.
Coming to the RND program at CHOP was my last step. When asked what my goals were for the program upon being admitted, I said "To become pain free and fully functional." Now I have officially left with that goal only half fulfilled. I am able to walk, run, and I am typing this with both of my hands instead of just my left like I used to. I can even do a push up! (Not very well, but, nonetheless, I am capable.)
But I now have total body RND and my pain has increased ten fold.
Will I shut down and lose everything? Will I show up for my one month follow up unable to laugh at Dr. Bernal's lame jokes? I hope not...
I will never be the same. The things that I have endured these last 2 years have made me into the person that I am today. For better or for worse. My scars will always remind me that the past is real even if this pain does eventually subside. I am a girl with a story.
There's no denying, I've been through a lot.
But what does that mean? I suppose only time will tell.
It's time to begin the next chapter of my life. My "post-Program" life... I wish I could say my "post-RND" life. That chapter has yet to begin but hopefully will soon.

Song of the day: Vienna ~ Billy Joel Because it's been stuck in my head, it's my favorite song right now, I think it is applicable to my life in almost every way, &
In honor of my other half T.K.H :)
love you TK! I couldn't have done it without you! & I love you all! thanks for reading my jumbled mess of thoughts! & thanks for your support! <3

Meliora :)

RND. scars that will stay.

Old habits may return,
but it's the scars that will still burn.
As the date begins to draw near,
I enter a state of panic and fear.
Will I ever be healthy?
I haven't a clue.
but I guess I should trust them
because it's the right thing to do.
Tell me it will all be alright,
teach me what I am to do in order to fight.
Can you really blame me?
Is it really my fault? 
Inside, I'm crumbling like a pillar of salt.
This pain is too much for me to bear
and now when I'll need you,
you won't be there.
To do the things that you have shown on my own.
It's scary for me,  
going back to the place where I'm alone.
Invisible pain is often misunderstood
by those who haven't felt what I wish I never could.
I've tried so hard,
but did I fail?
You threw your pitch but didn't make a sale.
Because believing in you hasn't worked out before
so pretending to have faith seems like too much of a chore.
I guess it's just back to the drawing board for me,
back to pretending to be pain free.
Oh how I wish that you could see.  
Because behind my smile is a hurting heart.
Behind my laugh,
I'm falling apart.
You need only look closely at me and you will see,
the girl I am...
is not me.
This pain has taken over as you can tell
but you say it's no use to scream and yell.
I used to be stubborn and strong inside too,
now I feel like that's just a wall that I've put up for you.
This was my last step so please don't let me fall.
This girl I've become,
just isn't me at all.

get well soon flowers

Song of the day: Bring me down -Lenka

Meliora :)