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 :)