Shanynrose (shanynrose) wrote in hidden_diseases,

Tell me your stories and let me tell the world...

x posted to two other pain or invisible disease related communities


I've been a member of this group for years, though I've only posted a few times. I watch, I read, I know what most of us go through...though no two of us have exactly the same issues.
I met and shared lunch with an awesome person from the know who you are, I have a car with a heater now, and I no longer pass out over dinner - ditched THAT med. Funny story, but I'm sure I scared the life out of said person. At least I didn't kill you (HUGS!)

Anyway, I've been involved in the entertainment industry - mostly extra work, two or three principal jobs (one was modeling, acting, AND voice-over. LOVED that!) and a couple theater projects. I have worked with a very successful playwright, teacher, and director who I know will be willing to help with my project. He likes me =) I've also taken a screenwriting class, but I got into an accident and couldn't finish. My screenplay skeletons are all in the closet waiting to come out - and people tell me what I have is great.

About six months ago I was sitting with my daughter at the hospital. This is not at all unusual (she's had 11 hospitalizations.) She has fibro and chronic pancreatitis, possible diabetes (should find out tomorrow,) seizures, and more. She used to be an apprentice for a regional ballet company before she got sick. She has finally learned to manage her symptoms (it's very difficult and timing is CRUCIAL) and has started teaching ballet and tap; even the community center classes make her happy. She goes to the gym with me now to do yoga but still takes her pain meds. Anyway, when I got the idea she was lying there zonked on fentanyl - allergic to all other IV pain meds, can you believe it? and I just started writing on the "Patient Bill of Rights." I had a sudden picture in my head of a line of different beds - sheepskin, space-age, free from Craigslist cuz I'm poor, the couch, and so on, interspersed with computer desks lined across a stage...each holding a person with fibro or another invisible disease. Above the stage is a screen where we can see the insomniacs messaging each other, and where we'll see the right and wrong answers from "Doctor Google." Thus was born either "Fibro, the Musical!" or "Invisible," if I decide to include other issues. Songs so far include "My Bed," which is about getting up in the morning or not, "Doctor Google/Don't Look it Up on the Internet" - jazz and barbershop mixed, "Jones," where the fibromites or others with invisible disabilities talk about what they need to get through a day, or an hour. Narcotics. Kittens. Cobra venom (look that one up - it's real.) It is sad, it is funny, it is GOING places. And it will not have a nifty wrapped up ending because fibro...doesn't. There will be an inspirational, remember we are all around you type musical finish, but closed door. No all happy happy.

What I'm asking for are your experiences. The Before. The Now. The Where Are We Going? Do you have fibro AND bipolar like I do, or other multiple diagnoses? I have to cement my characters and I have only one for sure, modeled on my daughter. I have two people from this list in mind who I'd love to build on, but I'm not going to ask directly. Yet, haha. Instead I'm going to ask ALL of you to help me grow characters and use bits and pieces of all of us. This show WILL go up. I also have a friend with perfect pitch who composes and the songs are in my head. I can sing them, he can play them for me. I have many years of musical training - five of them super-hardcore - but I can't play the piano with more than two fingers or I'd do it myself. Arranging? Yes. Composing? Only in my head. Everyone who shares life stories gets a program, and a salute/thank you/credit on the back when it's ready. Once I know who my characters are for sure, I'll know where to go as far as writing more songs, and adding "the business." If we weren't all over the world, ALL contributors would walk the red carpet. Maybe someday it WILL be all over the world, and then everyone can walk or roll down that red carpet. Be ready for poking fun at the Establishment, the Normals, and Ourselves. But it's serious, and some of the bits I have already make me cry.

One example, not a tearjerker: Sweeney Todd sings to his razors. I sing to my pill bottles and I am not kidding. I'm going to use that.

I'm not trying to rip off "Next to Normal," but I'd also like to hear from family, partners, spouses, friends...the ones who have watched us slide downhill or have hoped and prayed for us to climb out of the canyons. I have some of those as characters too. My biggest problem now is keeping it downsized for a CERTAIN opening...but in the end it will be BIG.

Email me at . I promise EVERYTHING will be read and replied to, even if it's a short reply. Making a RELEVANT musical that features new media (but not expensive new media) is going to appeal to many. EVERYONE, at least in the US, knows someone who has fibro.

And feel free, please, to ask me about my story and more of my daughter's. I'm allowed to share. MY jones (meds, and now the gym,) MY bed (a crummy couch) and more. When it's done, and the themes and songs are meshing fast now, I will share it with everyone who has shared with me.

Gentle hugs to all. Please help me grow this. At the very least, I can post video to YouTube. I am THAT confident.

There - best I can do for now. I look forward to hearing from all y'all who want to be a part of something awesome, and something IMPORTANT that needs to be out there.


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