Advocacy, and Magic Found at Starbucks...
This experience in St Louis continues to be a blessing.
Tonight, I'm so strongly reminded of one specific blessing -- that made this trying, exhausting, emotionally-draining, hardest week yet -- truly one of the most empowering, too.
Through the opportunity to work with the team at NHRC back home -- as we first started working through years of unexplained pain, a plethora of injuries; and worked through 'management-mode' simply to help me keep my candidacy for SDR, they began to help me truly FEEL and develop an intuition about the pain in my body. As we began healing what other "specialists" couldn't and found strategies to atleast try to slow down my CP deterioration -- I began to instinctively know, feel and articulate what I needed treatment on - or help with - at the clinic each week. We learned together - bc there is no single guidebook to adult CP - and as we learned, my ability to sense the specifics of my body was honed further. This has come to be a blessing these past 10 days especially -- bc it helped me articulate and fight for what I needed.
Because I never tend to do things according to plan, my recovery process w SDR has been markedly different than than the other adults before me in St Louis. Where most struggle through intense nerve pain in the days following surgery, I had none. Yet, I had SEVERE (!!!!!!), intense, agonising muscle pain in my legs at night. SEVERE. Let me say it again: SEVERE.
I knew instinctively that this pain was NOT nerve pain. I knew this bc of all Ive experienced with the team at NHRC. Yet, in Dr Park's absence (as he was out of the country visiting and assessing UK SDR children), no one from the adult pain team here would truly hear and validate that yes, this was muscular and not nerve based. They insisted on medicating me as though it was -- to no effect. Nonetheless, my Aunt and I continued to insist for a muscular intervention. Finally yesterday, 11 days later after my first request ...after not relenting, I received it.
And last night? I slept pain free, straight through the night for the first time since March 22nd. Today, I had the proper energy to give therapy my all. Today, my legs are starting to feel (a little bit) free. Tonight? I tackled a fear and figured out how to get into my Aunt's car --safely and pain-free. We went to Starbucks and it was a boost to my spirits. Tonight, I felt a tiny swell of confidence that, maybe. ...maybe..I CAN come home next week and that I'll be ok.
Tonight I felt hope and relief and freedom and gratitude....all because I was blessed to meet the NHRC team 5 years ago who taught me to truly intuitively know my body and how to articulate what I feel, to ultimately get solutions to problems I know the cause of in the depths of my being.
With this pain solution now in place, I breathe a sigh of relief, feel ready to tackle this last week, and feel like my hopeful self again.
This past week has reaffirmed for me to never underestimate my ability to be my own advocate. It made every difference and will only help others learn from my experience -- bc there is still so much to learn about Adult SDR and our recovery experience. It is very difficult and much different than that of a child.
A photo at Starbucks might seem mundane to many but to me -tonight - it meant EVERYTHING.
These past 10 days have been indescribably hard....and let me assure you - my Aunt was critical in being a voice and a rock for me. The stress and worry she has been under has been immense. I knew what my solution was but we'd still be fighting for it tonight if not for her. ❤
Dr Park returns from his travels soon and I see him on Monday for a review before coming home later next week. I will thank him endlessly for hearing me and ultimately providing what I needed to thrive and heal...as SOON as he was made fully aware of what I felt. I'll also have much feedback to offer so that other future adults may be able to avoid the experience I had. I don't knock the 'back up team"....but I do know fully why I came to Dr Park. His care and compassion and intolerance for mismanagement puts me at such ease, and while I struggled more than what should've been necessary....he did what needed to be done once I spoke up and advocated directly to him for myself. I'm so thankful that I did -with my Aunt's unwavering support because now? I feel like I've truly "got this".
Counting my blessings tonight --they are many.
Here's to tomorrow and the start of a new mountain being moved! 💪💚