Tuesday, November 24, 2020

The Mixed Up Year

 While we have a month and a half until 2021 hits us, I've been reflecting a lot on this crazy year. You know, many of us tend to say that about any given year, but I don't think we'll be doing that anymore. This takes the cake! Warning: This is raw.

Some say "If we'd only known" back in January what this year would be like. Some of us had some idea. My husband was watching China closely when the first signs of COVID hit. By three weeks in, he was warning that we needed to stock up because that virus was going to make its way to us and looked bad. How right he was, and I'm glad we did stock up. As the naysayers started in on their conspiracies and people started fighting for toilet paper, we already had masks, essentials, and more. When my main EDS/Dysautonomia doctor sent his recommendation to lock down, I'd already been for two weeks. There were ample amounts of fear and frustration, especially as some of my friends and family were calling it a hoax or "just the flu" or saying it would do the world a favor by taking out the sickly (um... I'm one of those...) and insisting it would all vanish in November. Well, we know how that has gone, and my already small circle has shrunken over it - some because they died of COVID and others for their continued hurtful words and posts without thought to find out if it were even true or realize how it would affect others. I miss quilting group. I miss being able to freely go out and meet with people. I miss seeing my family and traveling. It was already so hard to do so with my conditions, and now the pandemic made it impossible.

Spring hit, and with it, we were fully in the pandemic. At work, our numbers of enrolled students were exploding with families wanting proper curriculum for their students instead of quickly assembled packets and online busywork. Right in the middle of it, we learned the dual-enrollment program I run was in big trouble. The platform we were using was getting shut down with barely a 2-month notice. My entire summer was a race to find a new program, learn the ins and outs once one was found, help with the contract, write a new handbook, move students over, train the advisors, and more. It was rough and incredibly stressful, but I did it and the students are really liking being with a proper college now. 

While that was going on, my beloved online getaway was in a crisis of another kind. In September of 2019, I'd been asked to help build up the roleplay community in Star Wars Galaxies: Legends. Many of my friends from the original game were there, and they didn't like the way some roleplay leaders were acting. There was a lot of elitism and a lot of their way or ostracized, and there was a lot of behind the scenes bashing of people. So, I jumped back into that world with my now aged up Lazana and her niece. Through Lazana, I made sure everyone who walked into Coronet Cantina (a roleplaying hot spot) was spoken to and had a friendly face. That's all I did other than her entertaining. But, because of that, I gained a following. When epic drama hit that group, and people started to split up, nearly everyone followed me instead of them. 

Suddenly, I became the enemy and the attacks hit hard. At first, I fought back with examples of the poor behavior, and the Wrecking Crew returned with lies so absurd, relentless bullying, and tried to convince the powerheads of the game that I had caused the rift. Meanwhile, I move over to a player city, went silent on any commentary, and we made Mos Vanta home - our little corner of the sandbox. They sent spies, trolls, spread their lies, and made sure I had to keep looking over my shoulder. Ten months later, this is still true. As soon as something goes wrong in Mos Vanta or in a cross-guild or cross-faction story, or even in another town entirely, someone has to attempt to point to me. Thankfully, the community in Vanta points right back and keeps me mostly protected...

Between the beauty of the stories, was a lot of stress from the above. I ended up becoming a leader of Mos Vanta, something I never wanted. But its founder was so tired of being bullied by the Wrecking Crew that he needed a break from the game and community entirely. So, I became a co-leader. As Lazana converted to Mandalorian and her story developed, I jumped back into managing a large group of very diverse people... and any decision made was likely to upset at least a third of them. But the stories are amazing, go late into the night, and distract from the constant pain I'm in, so I stayed.

Maybe I shouldn't have, but I stayed.

The Ehlers-Danlos, Dysautonomia, and all of its "friends" were progressing too. So many partial dislocations. They now happen almost daily, sometimes multiple times a day. It became harder to keep up with being active and doing home physical therapy. I'm now facing a repair and donor tendon on the left knee at the end of December. Been through this on the right one, and it is a hard recovery... but it needs to be done. The knee is in constant pain and is getting weaker and starting to pop out. It leaves me unable to keep up physically in a lot of ways, and I'm losing strength elsewhere because of that.

In June, I was finally approved for home health care after proving the clinic I had been sent to - after my beloved nurses were assigned elsewhere and the original shut down because of the pandemic - couldn't accommodate my physical disabilities. It is so very nice to be at home for the now three times a week saline infusions. I can slow drip overnight and get the maximum benefit. I now have a home physical therapist too, but she doesn't do much. She just gives me directions of things to do when she's not there. Being accessed 5 days a week was a big lifestyle change. You cannot get the site wet, the dogs need to be kept away from it, and I'm even more a walking sepsis risk, but the benefits of keeping my blood volume up at a more normal level, my bp more stable, and staying more hydrated (as gastroparesis makes it so I cannot take in enough fluids) is well worth the changes. 

Won't even go into the stress of this election and how my circle reduced even more from that.

But the combination of all the above caused me to hit a wall I never have before. Normally, I can joke off or use sarcasm to push through what the genetic nightmare does. It was becoming harder and harder to do. In community or relationship things, I found myself escalating fast. I'd go from fine to tears or anxiety attack within seconds. I started yelling at Owen, something I never did before. I kept trying to rebound, trying to meditate and use mindfulness and all of the other tricks that used to work...

And they didn't.

And it got worse. A lot worse.

Last week, I sought help. My primary care doctor (really any doctor) has never seen me cry. I broke down while requesting whatever assistance she could get me. I had already researched a counseling center closer to me, as I did not want the long drives to UVA. She wrote out the referral to the center, and yesterday I was approved for it. After my surgery, I'll be starting weekly sessions at Horse and Soul at Higgins Farm. It combines counseling with equine therapy - which is perfect for me. She also recommended medication to try to help stabilize the wild emotional shifts. So far so good with that. 

It has been quite the mixed-up year for sure.

Friday, September 11, 2020

On What's in the Bucket...

 It's an uncomfortable question, being asked what is in one's Bucket List. For the mostly-healthy, I think it might be a bit less so, as they believe they have all this time to get through it. Maybe it makes the responses a little more flamboyant. With braving up this last year and being more open with others about having a combination of conditions which now have led to me being labeled as "terminal" and open to being moved to "palliative" care as no one sees improvement as being likely, I've been asked well over a dozen times if I have a Bucket List.

I do.

Kind of.

It's a work in progress, as I had some pretty crazy things on there, but I've slimmed those down. While there are some far-fetched things on the list (at least in my mind) a lot of it is doable with a bit of help.

So... here's Holly's Bucket List 

PLACES TO GO

    Return to Yellowstone

    Return to Colorado in the autumn and listen to the elk bugle one more time

    Finish the Lower 48 with visiting Oregon, Washington and California

    Finish the 50 states by visiting Hawaii and Alaska and stand on an active volcano

    Visit more of Europe after going back to Wales

    Visit Canada

THINGS TO DO

    Spend a couple weeks going back to storm/tornado chasing

    Record a CD of songs and readings for friends and family

    Become an Inspirational Speaker

    Go fishing and actually catch a fish

    Ride horses one more time (would have to be adaptive)

    Write and publish at least one more book

    Have someone seriously promote the Midnight to Morning trilogy

    Visit the ocean. Often. 

    Go on a Compassion International tour to meet one of my sponsored children 

    Live simply out of a camper so I can travel more

    Overnight in the cabins at Wild Heart Ranch in Oklahoma and help feed the babies and visit the other animals there

PEOPLE TO MEET OR SEE

    As many of my online friends as possible 

    Keep visiting family as much as possible, no matter where they live

    Either Amy Grant or Michael W. Smith (or both)

    Meet and spend time with Selah

    Nicole Nordeman 

    Attend a Secret Garden performance

    Attend more Selah concerts

    Attend as many concerts as possible. Period. Especially smaller acoustic ones of my long list of favored artists

 So there it is... What I'd love to do before these conditions do too much damage or "takes my life prematurely" as most of my specialists tend to say when discussing the long-term. I hope many of them can be completed while I keep praying for better treatment and a chance to cure some of it. 

Friday, February 28, 2020

On... In a Galaxy A Far Away

     Today Star Wars Galaxies: Legends turns four years old. All week, it has caused me to think over my SWG story... re-reading my last blog post, I had to smile. Not four days after I posted that, my entire online gaming world was rocked, and I'm loving it.
     But to understand why we need to start at the beginning... which would be during the 2008 summer Olympics. Back then, the man known to most across dozens of games as Gwreng or Ddraig was building a new PC for me. My old one couldn't run anything published after 2000. I was looking forward to trying out some of his vast collection of games. He had other ideas. Within days of it being completed, he had loaded up his favorite obsession, Star Wars Galaxies. I'd never been in an MMO before, never-the-less something so vast as SWG. Yet, there I was in the tutorial and being rescued by Han Solo himself. Soon, I was dropped in Mos Eisley, then instantly rushed off to some unknown location.
     I remember the room with the ornate table and incredible decorations and being clueless that someone in that room had designed the whole thing out of items in the game. He said this meeting would likely happen in character, and we had made a backstory for Amandiona... but I wasn't really sure of why. That night, I was introduced to the world of roleplaying through Anishor, Ramona Garcia and others, and my own world was never the same. There were lots of stumbling about that night. However, as I was introduced to those in Future Droids and Weapons Systems (FDWS) which Gwreng led, less intimidating connections were made. One member, Josh, took the time to teach me roleplay etiquette and commands and helped me flesh out Amandiona's story through conversation. We quickly became great friends. A couple months later, I was comfortable enough to join in Farpoint Valley's Monday evening gatherings and made so many connections there - ones I ended up leaning on when Gwreng started playing less and less. Months went by and we inherited the tiny town of New Kestic, Lok. It didn't stay tiny for long! Those connections and stories were spreading out as I gained more confidence. FDWS was growing and the stories were amazing! By the time Gwreng made his exit (For EVE...ick!) I was already running the guild and leading larger stories centered around the town. Every day I deployed 6 storyteller maps to enhance New Kestic and the stories grew to encompass multiple guilds. It was a great outlet after a long day of teaching.
     Then I became really sick... the genetic nightmare I was born with caught up to me. I couldn't teach anymore, could barely substitute, and was shuffling from specialist to specialist. SWG and my growing number of online friends and connections became more than an outlet. They became a lifeline. Through sports-wrapped partially-dislocating fingers, I was able to escape the increasing pain. The world written night after night kept me encouraged.
     And then it died...
     And I ended up in Star Trek Online, with its many limitations, and made some new connections along with my SWG friends who came along like Wyrrlicci, Jorax, and Josh.
     But this too passed and I had been hearing about Legends and how awesome it was. So Josh, my brother Alex, and I headed over. It was a rough start. They ended up not staying for long, but I was being recognized nearly everywhere I went... because Lazana, Amandiona's little sister, had the same last name, and Laz had been in Live too. It felt like coming home. It felt like I needed to be here... and soon it happened. I was asked to help out in the roleplay community. More specifically, asked if I'd commit to keeping my entertainer in Coronet cantina to help rebuild that facet of the community. I first tested the water with Laz's niece, Ardiona, to see how the roleplayers did things. Once I was comfortable with it, Lazana was brought in. Yes, it meant nights of dancing to an empty cantina for hours, but then a new or returning player would come in and start to talk or roleplay or ask questions, and it felt great to help them out. Some nights there was a lot of activity, and I did my best to work Lazana into the goings-on while encouraging people to engage with each other. There were some ups and downs, as there are in any roleplay community, but her story began to take off as the roleplay there did as well. I made new online friends who are amazing. Along the way, I was asked to help with the SWGRP Discord group, which has led to me now becoming a moderator. After a meeting with the ever-awesome RoarAsh, I was given a thread on the Legends forums to help highlight the player and roleplay events in the overall community. And it makes me grin. I LOVE seeing roleplayers come together and network and start stories that spread out elsewhere.
     Through it, I was asked to help build Mos Vanta an open-to-all roleplay town. Oh did we have some bumpy moments getting that going! But it has turned into something so beautiful. Now Lazana has her own little cantina she runs 4 nights a week, while the other 3 I continue to do as promised and keep rebuilding Coronet's cantina.
    While there are moments of frustration, it has remained an incredible blessing. I love chatting with my new online friends, and some have become quite dear to me. It's a lifeline now more than ever... as with my condition and the comorbidities it brings with it, I have recently been told I will "die prematurely" from it all. It makes me all the more determined to help bring the roleplaying community together for epic stories, hilarious moments, places to just hang out and relax and be distracted from the world around us and submerge into the world we are writing.... In a galaxy far away.