Monday, February 4, 2013
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 :)
Monday, September 17, 2012
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. :)
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. :)
Tuesday, May 15, 2012
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 :)
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 :)
Monday, May 14, 2012
RND. Meliora
If it doesn't challenge you it doesn't change you - Fred Devito
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.
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,
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!!
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 :)
Wednesday, March 21, 2012
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 :)
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 :)
Tuesday, March 20, 2012
RND. Memories.
Someday...
My RND, will be nothing but a memory.
Song of the day: Many The Miles- Sara Barielles
Meliora :)
My RND, will be nothing but a memory.
Song of the day: Many The Miles- Sara Barielles
Meliora :)
Friday, March 9, 2012
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 :)
“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 :)
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