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 :)