I’ve recently started courses at a school I’ve admired and respected for a long time. It’s a place I always dreamed of going to, in some alternate fabulous universe, but it seemed like a far-fetched fantasy.
Now that I’m here, I feel an extreme sense of joy that I imagined would elude me forever. It’s felt that way since all of the medical stuff in my life essentially took over my life.
Last week, I acquired an official school I.D. card. Standing in the line, with the pre-college students, (that program began on the same day), my excitement was palpable. The kids were about as excited as a piece of drywall. Not me. I handed my schedule to the security guard and watched as the horrible picture (LOL) printed out. He carefully placed the “summer 2016” sticker in the designated area on the small plastic rectangle, placed it in the card holder on a thin chain and handed it to me. At that moment, I nearly burst into song, “I’ve got the golden ticket! I’ve got the golden ticket! I’ve got a golden chance to make my way! And with the golden ticket, it’s a golden daaaaaaaaay!” From “Willy Wonka and The Chocolate Factory.” The original, not the weird remake. But that’s how happy I am.
After 18 years of living as a background character in my own life – part of the everyday hum of my existence but not a main player – it’s really amazing to be called off the bench. After believing that my health would continue to impede my “every day” forever – and those of my husband and daughter – it’s nice to be a part of something again. Don’t get me wrong, I’m not cured. RSD isn’t finished with me, although I wish that was the case. I have many days where I feel like someone rather squished by a steam roller. Or pangs of that old, familiar sensitivity take over my arms or feet.
But nothing keeps me back. I won’t allow it to. So, in keeping with that vein, I’m finally having the pump removed! It’s taken me 6 months to reach this place. Months to stop being afraid, though I’d never admitted the depths of my fear: that I would need to replace the pump. That my best efforts to deflect any personal misgivings felt about leaving things alone, would fail late at night. I’d lay awake, long into the early morning, worried that I was gambling with my health. That my bravado was foolish. That I was in denial. I’ve been in denial about health issues many times over the last 18 years: That I didn’t need certain meds or tests done. That I should wait to have the pump trial and subsequent placement – “for my family’s sake.” I’m sure everyone can relate to that.
But this time, I gave my doctor definite deadlines. If I got past the April performance. If I got through the June dance shows – then, and only then, would I give a definitive answer about the future of my medtronic pump. Those months flew by and suddenly I was left with my own words, ringing in my ears. April came and went, pain was present but that glorious weekend at the 92nd Street Y was a success. The June shows were phenomenal. I’ve even been in school since early June, night classes two nights per week. And though exhausted and physically strained at times, I’m still standing! Well, sitting, but you get my point.
And so, I’m holding on to the joys of the every day. I’m so loving seeing my daughter’s artwork. Hearing the sounds of her music, singing and guitalele-playing. Summer has been calm, though hot, and this is the time to have the pump out. Teaching will start up in the fall, classes will be resumed and my life will go on. But it has to go on without this hockey puck-sized lump protruding from my abdomen without purpose. Maybe that 3 inch scar can really fade for good.
Planned for late July, I will finally close this chapter of my story. RSD and I will deal with each other as we have been since my 2003 diagnosis. It will be whatever it will be. But never again will I allow myself to forget the warrior I’ve been all these years. Having spent the better part of these years trying to boost others – reminding them of their warrior status – I nearly forgot the fight I’ve put up all this time. And continue to put up. I’ve been able to do this because of my husband, daughter, mom and entire family, great friends and online fellow-warriors. This isn’t a solitary battle, if we don’t want it to be. There’s something. Incredibly powerful about sharing the load with others who know exactly what you’re talking about, and never make you feel like you’ve lost your mind. So thank you, to everyone who’s ever given me that boost. I needed it, still need it. We all do. ❤️
I got the pre-op EKG and bloodwork that all surgeries require. I’ll count down the days until I no longer have to feel the itchy, sharp, poking sensations of “the pump.”
But, at the moment, I’m off to continue working on a homework assignment. And the smile on my face couldn’t be bigger.
Peace & painlessness,
#RSDwarrior #makeitwork #WonkaGoldenTicket