Ramblings During This Global Pandemic

"These are mad times we live in! Mad!"

Any Harry Potter fans in here? There must be. Who can name who said this? Should I tell you or make you comment the answer? hahaha. Either way, this little bit of dialogue keeps running through my head lately. Usually multiple times a day. As well as a few other bits from Harry Potter (I'm a huge Harry Potter geek, you should know that by now. And just a geek in general, too. A damn proud one!! lol )

"This is mental."
"Completely mental."
"The world's mental."

"The whole world's gone topsy-turvy."

(Ten points to Gryffindor if you can name who said all of those. I'm a Gryffindor, so that's why I used that house.)

The bits of dialogue that are running through my head on a regular basis. As well as certain similarities to certain films, that maybe I won't go into here, and leave that for my cousin and I to talk about.

I have anxiety on a daily basis, so when this all started to blow up, so to speak, I expected myself to be far more panicked than I was, or than I currently am. I think I'm handling this ridiculously well considering my penchant for anxiety on a "normal" day. There was a great post on Instagram about this. How people with anxiety are handling things, and watching other people act the way we feel on a daily basis. Which is a scary thought, because as my cousin and I discussed, any decision made from a place of fear, isn't going to do any good to anyone.

The virus of course scares me, especially since I'm in the immuno-suppressed group and therefore more susceptible to it but I think mass panic scares me more than that. Because, again, decisions made from fear don't help anyone. And mass hysteria can spread fast, and quite possibly spread far more damage than the virus itself...?

Something else that scares me, and pisses me off, are the people who don't seem to be taking this seriously. Still. Even though it is literally a global pandemic. I know not everyone can stay home. There are essential workers that keep society going, and are integral at the best of times, but especially at a time like this. Doctors, nurses, Postal workers, plumbers, police officers, janitors, grocery and food workers, etc. So if you can stay home, then do it. If you can and you aren't, I'm sorry, but you are part of the problem not the solution. And if you can't, then be sure to exercise all of the precautions we are being told to. Even if it may not be serious for you if you caught the virus, it could be for someone else. You could give it to someone who may not make it out to the other side of this crisis. So please be mindful of that, and do what you can. If you can stay home, then do. Especially because there ARE people who can't. (And these people should take all of the other precautions).(And this doesn't just mean doctors, nurses, etc. Because there are other circumstances, as well.)  But if you can, then PLEASE DO. (There are still other things to discuss about al of this but today this is what I'm talking about. <3 )

And remember, if you are reading this right now, that means you have access to technology where you can connect with your friends and family still. I'm not saying this is easy. It IS hard, but the more people go against what these precautions are (or don't stay at home when they can), the longer this is going to last. As I said, if you're reading this, then you have access to amazing ways to connect to people you love, even in the midst of this trying time. So hold on a little longer, we can get through this.

Dr. Seuss Inspired Poem on Facebook

Anxiety Post on Instagram

UPDATED: Rare Disease Day + New Project Announcement!!

I've posted about Rare Disease Day before on this blog. I believe that it is an important day to be recognized so that we can spread awareness about rare diseases in the world. People are effected by them. Spreading awareness could always help so if you read this post any shares would be greatly appreciated.

This year I got in touch with Cameron Von St. James to partner up on my Rare Disease Day post. Cameron's wife is a survivor of a rare cancer called Mesothelioma. This type of cancer is caused by exposure to asbesto s fibers. Asbestos has been known to cause cancer for many years, but there is still no ban on it in many countries. Unfortunately, most diagnosed with Mesothelioma are only given a few months or years to live. As you know, I have a condition called Nephropathic Cystinosis (click on the link for more information.) There is also information in the below graphic. We decided to merge our missions and share some graphics that have more information on rare diseases as we both feel it is an important thing to spread awareness about. I also have a video from NORD (National Organization for Rare Diseases) in this post. At this end of this, after this information, I'm going to be making an announcement about a new project that I'm working on because I believe that it pertains to this.

Don't forget, to show your support for Rare Disease Day (the last day of February) wear denim!!

NORD's Video

                                                                                                           Credit: Mesothelioma Cancer Alliance

  

Please also check out this page on Mesotheliomia.net's website!! Few months or years to live  << CLICK HERE <3 <3 

Announcement:

I'm taking part in a new project that I hope I will be able to share with you all in the not too far off future. I partnered up with a mom of a young girl with Cystinosis to put together a collection of mini memoirs from people in the Cystinosis community. People with Cystinosis and caregivers alike. We want them to be able to share their stories and hopefully give people some hope. Even people who are not directly effected by Cystinosis. In addition, all of the proceeds from the book will be going to Cystinosis research. So be on the lookout for that project!! Hopefully there will be a cover to reveal to you not too long from now!! 

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Check out NORD's site and learn some more about rare diseases. You may even know someone effected by a rare disease and just not know it. Since these diseases are rare, there isn't lot of awareness about them. So if you could share this post and help us spread that awareness that would be wonderful!! Don't forget to wear that denim!! 

Please consider donating to Cystinosis Research and to Mesothelioma research. 

Thank you!!