MORE MUSIC

 THE WORLD NEEDS MORE MUSIC... not just any music...

As this music piece is being written, my heart is listening to a soundtrack that not only reminds me of my big sister, Erin, but is also a pivotal piece of music from my childhood, because of her. Her impact on my life and my love stems quite a bit from the varying styles of her music choices.

From Gund and Roses, Def Leppard, Daft Punk, anything by Andrew Lloyd Webber, and Sarah Brightman. Surely there are some I am missing, but the one that stands out the most for me is 100% this badass musical, written by the amazing Sir Andrew Lloyd Webber...

This is 100% the best musical of all time. There can only be one Sarah Brightman and one Michael Crawford or Colm Wilkinson. I saw the show in Ottawa with my school, and it was Jeff Hyslop as the Phantom. Jeff Hyslop, if you're a Canadian kid from the 80's, you will know him as Jeff the mannequin from Today's Special. Equally talented, but no Colm or Michael. Sarah Brightman was the reason behind the Christine character.

Music can take you back to good times, remind you of the not-so-good times, but definitely not in my house. I remember where I was when certain songs came on, some of which I never wish to hear again, but the moments are easily recalled and forgotten. Except for this soundtrack, when she was gone, I would sneak into her room and borrow this double-disc CD from her room. It reminds me of the Body Shop scent White Musk, and when she travelled to England to show off her vocal talents. Man, can she sing.

Maybe this should be a post about my sister, and how she influenced me growing up. I don't think I have ever told her this in person. Not something easy to do. I am often the center of the circle, not wishing to be, but being applauded for my accomplishment, and hers falling to the wayside.

Little does she know, I joined the theatre to be closer to her, to be like her. We were so different, and continue to be different; I thought that this could bring us closer together. But then University hit her, not me, dear lord, not me. lol She made new friends, didn't want to live in our hometown anymore, and decided that Ottawa was her home. 

Her influence is always in my mind, and it's fun to see now, as we grow older, how much we have always had in common in more things than not. We're both the kind of girls who get so involved in something that we go at it 150% or nothing at all. I am sure we could combine so many things these days, more than we ever could before.

ART --> We have weekly paint nights together, and I love them

SEWING -> she's way better at it, I like it, but don't have the funds to pursue

MUSIC -> similar styles, but then again, we grew up in a music-filled home... Thanks Poppa

I love all kinds of music, so many different genres, it's mystifying what I can find anything to listen to half the time. Now I am going to leave you, to listen to more music.

Love, Love Love, my friends

~A

It's about the music

 Wassup, my peeps???

I have found a song that needs to be addressed. I have found a post from an artist who mashed up all the best BASS action songs from my early 20s, and now I wish I could find the whole mix. Brings me back to a time when dancing in a smoke-filled bar, not drinking, and having the best time ever.

Am I old enough to consider this music vintage compared to the current generation? We've got some Snoop on it, Kanye when he was actually good, USHER and a whole load of master DJ tracks. Aaaah, Freddy's how I miss dancing all night, 7 days a week, having VIP access and being the one to drive all my friends crazy because I was sober, and driving their drunk asses home.

Curbs will jump up on you, and I will tell you not to get your blood on the leather seats of my Pontiac GTP. Cranking the bass lines up, while your besties billet stick his head out the moon roof, only to be hit in the head with a June big!!!!  I am dying of laughter just thinking about it.

Driving to a local pizza place to grab a poutine at 3am, and stuffing a pizza down your throat. Life seemed simple then. I would go to bed at 4 in the morning, wake up at 7am to go to work, and then back at the club around 10pm. Remember when we had energy to spare, remember when we had a place to go to dance out our frustrations, ignoring the hectic times we had during the day. There are no safe outlets anymore. This generation of tech and bad music will never understand that we never stayed home.

I had my gallbladder removed, and still went to the bar the next night, showing off my laparoscopic marks as though they were trophies. Dancing on gogo boxes, fist pumping with the DJ in the booth. The music was so loud that when you went outside to go home, it was deafening. Clothes and hair reeking of cigarette smoke that filled the air, turning the haze in the room from the fog machine a grey-blue colour.

Watching girls having fun, being able to reject the guys without being assaulted because they said no, I am with my girls. Sure, they would get angry, but the bouncers took really good care to ensure the women in the bar were safe. This was a time when girls could hang out with one another without being compared to each other.

Times have changed! I wouldn't go to the club now even if you paid me. Everything is scary. People have too much time on their hands. I don't know if I just turned a blind eye to what was happening in the club, but I was there often enough to never see it. Sure, there were fights, sure, there were creepy ass men there, that's why we ignored them.

Maybe it's because my group was surrounded by young men who lived to fight, on 4mm pieces of metal that can cut your carotid artery. Maybe that's why I felt safe. 

I lived my 20s like I was supposed to, CF and all. I enjoyed being with my friends, going to the hockey games every weekend and each week. I was a photographer for the team, and I was on the training staff. It's a different world now, I don't go to places cause I am scared of catching something. I don't socialize much because I am afraid of catching something. I don't, because I am compromised, I am ... well, I  AM OLD in my CF life, and I am grateful and humbled to be here and advocating for my friends with CF.

I GOT YOU! Live through me, don't copy me! 

Unless it's getting into sports, then please copy me!!! haha

Just wanted to share that I was a little reckless. Be a little reckless, you only get to do it once. But don't be stupid about it.

I don't know where to start ...

Hello, it's me, we've been together so long now that I feel like these opening sentences are beginning to sound the same.

Have I reached that point in my life where my brain shuts off? 

This is a major possibility, but I mean that in the literal sense.

IT's no secret that I am not a young girl anymore, in fact, in the CF community I am considered "Elder," so you know what that means... peri-meopause and the like.

But this post isn't about that. I am going to get a little personal on this, if you will allow me.

I had my yearly lady test done. Block your ears, men, or close your eyes; however, I do encourage you to read on. I mean, your wives are all going to go through this, and maybe with the results that I am going through.

So my test resulted in some HPV. I will have to undergo a type of test that will confirm if I have, in fact, contracted some type of HPV that could lead to other issues. Because some of the life-saving medications I take due to transplant, there is a higher chance of getting some form of... well, I don't even want to put that out there. Let's just say I am not opposed to cleaning out the system.

During this visit to my Doctor, I requested a chest x-ray and a sternum x-ray.

Chest x-ray because I had a pretty bad head cold that managed to find its way into my lungs, and I just wanted to make sure that there wasn't anything to be worried about, that there wasn't any pseudomonas or pneumonia sitting in the deep dark corners of my chest. All seemed clear, nothing to be concerned about. Praise Jesus.

However, during this head/chest cold, I did cough a lot. Deep painful coughs, being CF, the one thing we were trained to do is cough it all out. I have learned to cough to the depths of hell. No bug is taking me out that quickly. So, needless to say, this coughing may have done other damage.

Thus bringing in the request to check my Sternum. Results came in quite a bit later than I would have thought. Turns out, there was some damage. The wires that have been holding my sternum together for the past 16 years have broken, and my sternum is unattached. Maybe I am using the wrong wording here, but it's pretty simple, it is cracked, split, separated, however you want to word it.

So I have all my follow-up appointments on the same day. On Friday, I have an MRI for my head to find out what is causing my headaches, then I have an appointment with my OBGYN, and then I have the CT scan of my lungs. Amazing what you can do when you fight for yourself.

This is something I am very good at. I will advocate for myself, my body and everything I need to keep my body and mind healthy. Try and stop me. I will advocate for my fellow CF'ers, and I have done just that, and will continue to do this until doctors realize that they don't have control over our bodies; we live in them daily, we are the ones who are repairing them and taking notes on what is happening each and every single day.

We live to fight for the next generation of CF'ers coming up the pipeline.

We have done so much for this coming generation, only for me to realize that my generation has to do it all again. We are living in a time that no one has studied, lived longer than ever before. No one has done any studies on CF women or men after 40, post-transplant and how our medication affects our hormones as we age, and most importantly for me, but my hormones after transplant, where we cannot receive hormone replacements when we start peri-menopause.

There are so many questions that our doctors cannot answer, and they can't because this is uncharted territory. Let the poking and prodding commence. Let's study adults with CF who are unable to take gene-modulating therapies. I will keep you all posted, and we will see how all this goes as time passes.

Wish us luck as we brace for an adventure into the unknown.

I will update you on how the follow-ups go.

Be well, stay safe, stay hydrated and lift with your legs, not your back!

~A