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.
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 :)
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