Answers for Indy

14/01/2025

11/01/2025

11/01/2025

11/01/2025

On this night 8 years ago, I was bracing myself for one of the toughest battles I’ve ever been faced with, and tonight I’m celebrating 8 years of survivorship! Cheers to 8 years, 1/31/2017!

04/01/2025

Finally got around to putting some stickers and my license plate on this sucker! So the chaos cruiser is all ready for the Bahamas! My amazing friend Cassie made the stickers and the license plate I got at Walmart in the section with all the bicycle gear.

03/01/2025

This information that has come out recently was a dream of mine to hear since diagnosis 11 years ago and without the work of us warriors demanding better, this would not be a reality. It’s the tiniest droplets of hope that mean the most to me and show me that my work and our communities work is paying off. We are rare like diamonds and just as tough!

29/12/2024

I really wish I had discovered this song back in 2014 when I was diagnosed with CVS. I was absolutely terrified to say anything to anyone about it in fear, and now if there’s anything I could tell my 8 year old self it would be “You gotta be what tomorrow needs”…

Provided to YouTube by Reprise SING · My Chemical Romance Danger Days: The True Lives of the Fabulous Killjoys ℗ 2010 Reprise Records Guitar Technician:...

26/12/2024

Okay, now that I have some time to sit down and do a serious update i figured I’d fill everyone in cause things have been chaotic lately….

First things first, I wanna start by saying happy holidays. My Christmas was good, depressing as hell for a lot of reasons but good and we leave for the Bahamas in 9 days which is something to look forward to, which is something I really need. I didn’t get much because of our cruise, but I did get a new set of headphones and some gift cards for when I go to the outlets. As far as physical symptoms are going, I’ve had a lot and I blame them on one thing.

Before I get into that, can I just ask a simple question? Why the F don’t doctors check the notes before prescribing medication? It absolutely baffles me how much stupidity comes with every prescription because even with half a braincell, anyone could have seen this coming and we should of, except we expected the doctor to check the side effects of this new drug so we wouldn’t have to. That’s where it starts… First of all, it started with me getting headaches. We didn’t think much of it, we treated it and went on with life. Simple, right? Bahaha, nope! Why would anything be simple?! Then my night terrors and my visions came back. The visions are never wrong, and naturally they predicted some s**t that messed me up mentally, so I decided to google the side effects and my mom did the same. Turns out, my new seizure medication had me screwed up in ways we could have only fathomed. Bruising, metabolic issues, sleeping problems, mental distress, agitation, headaches, you name it and it was on the list. So needless to say, we stopped that. So now it’s back to the drawing board again. Currently I’m on Ativan, but this wasn’t approved by anyone. However I’ve never had any issues with Ativan, so maybe that’s the answer we need. As far as genetics goes, I got my test kits today for that so both my mom and I can get tested. Hopefully we have answers, because quite honestly I’ll probably cry in defeat if we’ve come all this way for nothing again. So that’s that, not much more to say but I’ll update when I can. Love you all!

24/12/2024

God I’m so f*cked up right now that I’m both internally laughing and crying…

I love my neurologist but holy f**k, this may be the dumbest thing he’s ever done. My god, please read the notes next time so I don’t have to suffer.

22/12/2024

Not really a medical update, more of a life update and it’s that I went on a small outing today! Here’s my haul, except for a few things that I’m either wearing at the moment (and also a magnet I got for our car). I’m super excited about all of it, I love the spray and I can’t wait to read those comics and cuddle with my newest plushie!

20/12/2024

So my genetics appointment happened and went over great!! Not really much to say, I really thought this update would have been something but it really wasn’t anything spectacular. However I hope this gives me some answers I didn’t have before. Anyways here’s a photo of Bridget I took before the appointment to make up for a sort of lackluster update.

15/12/2024

There’s certain things about hospital trauma that nobody will ever tell you about, and for me it’s the feeling that I can never escape that one unit. For me, it would be CHOP’s seashore house. The things that unit did to me will forever haunt me. When we would go for appointments, I’d have to close my eyes as we would cut through that building to prevent myself from seeing the signs, panicking and feeling trapped and as if they were all coming after me. Recently we went through our attic and found a tote with the abbreviations of “3West, CSH” written on the side in sharpie and I had to turn it sideways so I wouldn’t see it. I know they can’t get me, but the thought still lives within in me and terrifies me.

07/12/2024

Updated this for 2024, and I meant every word then and still do now. I didn’t ask for this life, this life asked for me 💙💎

29/11/2024

I’m genuinely surprised i didn’t get bingo here. Also I’m gonna add my favorite honorable mentions that aren’t here,

“The samples aren’t tainted, trust us”

“We don’t know what happened and we don’t think it’ll ever happen again”

“Have you tried desensitizing the pain away?”

“Stop making yourself sick, there’s nothing wrong”

“We have nothing to do with Zebras”

And lastly, my favorite one of all

“Are you sure you have CVS? I think you have CHS”