tag:blogger.com,1999:blog-19415935861652180782024-02-20T16:27:48.882-05:00Holly's Midnight Musingsddraigswifehttp://www.blogger.com/profile/07952795229433613418noreply@blogger.comBlogger69125tag:blogger.com,1999:blog-1941593586165218078.post-37420616556047436512023-11-08T01:40:00.004-05:002023-11-09T17:20:57.143-05:00On Pausing... Selah<p> This is a hard post to write, because anyone who knows me well, or has been in my house any length of time, knows the trio "Selah" is often heard playing. I have been a fan of theirs for nearly 20 years now, back when it was Todd Smith, his sister Nicole, and Alan Hall and now with Amy Perry. Their music was so uplifting, voices so powerful, and the message so strong. It helped get me through a lot of tough spots. I'd even performed some of their songs at a few conferences. </p><p>I rarely got to see them in concert when I lived in Virginia. They never were any less than a 2 hours drive from me, so I only got to see them two times. But, I supported them by buying every CD at pre-release, playing them often on Spotify, and sharing the music with others. One of my biggest excitements about moving to Central Tennessee was that I'd be within 90 minutes of several dozen popular concert locations and so many big churches my favorite artists would perform at.</p><p>In the midst of my cancer battle, as I was wrapping up the Red Devil and Cyotaxin combo and taking a two-week break before starting Taxol, Selah was going to be having a Christmas concert just an hour away. It would be my FIRST concert in Tennessee. I was thrilled! </p><p>I knew, with my disabilities and cancer battle, pre-planning had to happen to make the night a success, and I jumped right into it. Churches tend to have these mini rows in the back for the disabled. As if tucking us back there is safer, and keeping us out of sight is easier on all. But it's so hard to see from there unless the sanctuary is built on an angle, and so many of us have vision issues or it's hard to hear and focus with the entire crowd in front of us. I was trying to avoid that.</p><p>Immediately, things went south. Within 48 hours of sales opening, all of the premium tickets were gone. Those were the first few rows of the church. I later learned they weren't even offered to the general public. The church bought them out immediately. So, I bought the regular ones for myself and those coming with me and made note of when the church said doors were opening for general seating. We planned to arrive 30 min before that, though hoped it would not be needed. My next step was to message Selah's contact on their website, the hosting church, and the sponsoring radio station. I told them of my disabilities and the issues many face in smaller venues like churches and asked what could be done so I wasn't stuck in the back rows. I also shared my love of the trio, cancer battle, and the hope that maybe something could be arranged so I could meet them. </p><p><b>Silence.</b> From all three. As the day approached, I tried again and even messaged their Facebook page. <b>Silence.</b> From everyone. It was crushing. </p><p>The day of, I was anxious. Would I even be able to find a seat where I could see them? The chemo was making a mess of my vision, and I was using my forearm crutches to get around. We arrived super early... only to find the church had opened the doors to their regulars even before the announced time. Then, in the windows, I could see people meeting and talking to Selah - all smiles and laughter. My emotions dropped as we entered the 2/3rds full sanctuary and tried to find enough seats so we could be together and I could at least be on the end to lean over and see maybe part of the stage. Where we sat had an overhead fan blowing cold air, so we had to keep our coats and gloves on. I started to cry. </p><p>My mother, knowing I had taken all of these steps to make the concert experience safer and better for me and how much I love the trio, got up and went to start talking to whomever she could find. It took a few tries before one of the radio hosts told her she had to buy a CD and get in line after the concert in order to meet Selah. He told her that when a certain song came on, that was the end of the show and I should head out then to be one of the first. Being I already own all of their CD's she picked a duplicate and came back to tell me. I love her so much! It was at least something. I'd be able to briefly see them up close.</p><p>The concert itself was grand. While I could only see the piano and Alan and not much more between lights and people, the sound was great! I enjoyed the music, stories, and the video segments on the big screen. My hands were in the air for a few songs, and for a bit of time the trials subsided. </p><p>We made our way out at the start of the final song. I was first in line and spoke to the radio host while waiting. He was pretty friendly, though distracted. Finally, Todd, Amy, and Alan took their seats, but were immediately rushed by line skippers and VIPs. So, leaning on my crutches, I waited. When it was time, I got to say a few things to Alan before Todd reached for my hand and asked about the cancer and spoke very kindly to me. I tried to introduce Amy to my niece, who is adopted from foster care - knowing she is a foster mom, but she didn't seem to note it. Alan was super sweet to her, though! As we gathered to take a picture, I brought up how long I'd been listening to their music and how my last concert was when Amy had been with the trio for just three weeks. I had my years off, though, and the only words Amy said to me was to snap the correct years. It was too much. The group pictures have me tearing up in them. And by the time we got to the car, I was crying once more.</p><p> Almost a year later, this experience has lingered with me. I've not attempted to see anyone else in concert, though so many happen around here. And, when Selah announced a date in Nashville, I made a reply on their Facebook about how I'd like to see them, but the last experience had me still sad. Amy Perry popped on immediately with a defensive comment about how the concerts are usually fun. I replied that I'm sure they were, and I'd be open to discussing the lengths we went to to make sure it could be for me. Then, once more, I sent a message off to Rixon Enertainment Group. <b>And there's silence.</b></p><p><b><u>What's worse? I was removed from their Facebook page.</u> </b>Christians are their own worst enemies... and a disabled person trying to make sure seeing her favorite Christian artist and being treated like that is just wrong. I'm gutted. It hurts to hear the songs that once uplifted me. It brings tears instead of joy. I've found myself removing many of their songs from my Spotify list, tucking their CDs away instead of playing them in my stereo. </p><p>And I don't know if anyone will do anything about it. For 18 years of support, one sentence, and an invitation to speak on disability access and service to those who support you, after trying so hard to get that accessibility at a show... and gone. </p><p>And so we Pause. As their name states Selah.<br /><br /></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi0MorkpMBea5VM7BNokhsZCKCsvYPlmqYV-Ss8q7LlTXrOcu0niy7WOh9ziKtfnQxEYljyxrw8ZEsw4zELKScKEiN4cwerzMXh1K6FgWav1gXaQLtBUKjBlyi9U__wlVXd7qrJUJgJuGXXktyuyinl1fDmoe6AfnAh6zj6q7-RRG3Jtj41FGW0LMu9jpnZ/s480/Selah%20with%20Todd.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="480" data-original-width="360" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi0MorkpMBea5VM7BNokhsZCKCsvYPlmqYV-Ss8q7LlTXrOcu0niy7WOh9ziKtfnQxEYljyxrw8ZEsw4zELKScKEiN4cwerzMXh1K6FgWav1gXaQLtBUKjBlyi9U__wlVXd7qrJUJgJuGXXktyuyinl1fDmoe6AfnAh6zj6q7-RRG3Jtj41FGW0LMu9jpnZ/s320/Selah%20with%20Todd.jpg" width="240" /></a></div><br />ddraigswifehttp://www.blogger.com/profile/07952795229433613418noreply@blogger.com0tag:blogger.com,1999:blog-1941593586165218078.post-70408084249180097542023-11-02T23:59:00.002-04:002023-11-03T00:00:48.616-04:00On Angels Of The Trip (Disney Part 2)<p> My entire trip to Disney, from the planning phase to the moment I was reunited with my parents at the end was filled with "angels." I was so nervous going into this adventure, so much had to be done and it was going to be a costly thing to have go sideways. But, from the very start, God paved the way and put people in the right place at the right time.</p><p><b>Beforehand: </b>I had been saving up, slowly, for the trip. The multiple moves, cancer battle, and other things had put that on hold. But I had the special needs trust to lean on if I didn't save enough. But then the first angel arrived. A lifelong mentor and dear friend sent a check that covered the entire cost of the resort and park tickets! I'd just need to cover the car, airfare, scooter rental, and daily expenses. </p><p>Then, as the announcement of the trip was made, a former co-worker and precious friend Margret, and her husband Greg, contacted me. They are avid Disney World fans and visit frequently. They said they'd come with me for the first part of the trip. I wasn't going to have to tackle Disney alone! </p><p><b>Onward to Flordia:</b> I had gotten a great discount with USAA for my plane ticket, and it was a straight-through flight to Orlando - so needed. The problem is the flight initially labeled as United was actually Silver Airways. The reviews for the airline were appalling, so I braced myself. Sure enough, it took 4 days and nine hours to reach a human about needing a skycap to get me from curb to terminal, only to find out the day of that they never put in the notes. Thankfully, Huntsville Airport scrambled and found a super sweet employee who took me all the way through. I made sure at the terminal to have the person checking us in note I needed wheelchair assistance at Orlando. He promised to enter it in right that moment. He didn't.</p><p>After 5 hours of delays and getting to Orlando at 1 a.m., the wheelchair wasn't there. The lady at the desk was annoyed, and those on the plane were super apologetic as I waited and waited for help. But an angel of a young man was sent to help me. He was so sweet and decided to break protocol. He's only supposed to take me to the luggage/curb and that's it. But it was so late, and I was so tired, and he saw it so took me all the way out to the garage and got me checked in with the car rental, and even loaded up the vehicle for me! </p><p>The drive to the resort was painful. I had torn up the surgery site in my elbow a few weeks prior and was in the big metal brace post-injections for all of the trip. But, I made it to Pop Century at nearly 2 a.m. The woman at the front desk was saddened by my experience getting there and quickly called someone to help as she saw I was dead on my feet. I had to somehow get both my rented scooter, car, and luggage, over to where my room was. Enter the next angel, named Edwin. He drove the scooter around as I found a place to park closer to the room. Then we switched places with him hauling my luggage (mind you this is heavy because I had IV fluids and my CPAP in the big bag on top of everything you'd usually bring.) At 2:40 I was finally securely in the room and resting.</p><p><b>At Disney</b>: Bright and early, I met with Margret and Greg. Margret with one of those awesome cooling towels in hand as a gift for me. We were soon off and running to Epcot to see my favorite character, Figment! But we were having some issues understanding the DAS system, and that's when the next angel arrived. An elderly man, working for Disney in his retirement years, patiently explained the difference between DAS and DAS Advanced that I'd set up and showed me how to access it all on the phone. Margret and Greg were the best angels the two days, using their photo pass so I had some amazing memory pictures, making sure I knew the best ways to get to the best spots for when I was soloing later, getting us onto Ride of the Resistance on a super busy day (OMG that ride!), the hilarity at Prime Time Diner and so much more. Along the way, there were people who opened doors, raced over to help if I dropped something, helped me reach items I couldn't because of the scooter or brace, noticed my "This is my fight hat" with the breast cancer symbol and shared their stories or words of encouragement and more. It wasn't just staff either but fellow visitors. I've never felt more accepted than those days in the park.</p><p><b>Interlude at The Villages:</b> I loved the four days of seeing family at The Villages. But the angel shout-outs go to my Aunt Anna for her incredible packing skills! I had to ship a box home because there wasn't any way to fit the droid I bought, and other things, into my suitcase otherwise. She fit so much into that little box, I don't know how she did it! The other is to my cousin Stephanie for the wonderful hours we spent hanging out and catching up. It was so meaningful and needed. </p><p><b>Heading Home to Tennessee:</b> After how the flight out went, I was quite nervous about the one home. Orlando does not have a good reputation among disabled fliers, especially regarding their TSA. I hadn't heard from TSA Cares so left super early to make sure I could get through it and the airport with waits for help. But the moment I pulled my rental car up and started to strap on the arm brace, an employee of the airport was there to load my luggage onto the cart after reminding that he works for tips. We had a lovely chat about his home country of Venezuela as he helped me through checking in the car and getting to the counter for Silver. They actually had noted my need of a wheelchair this time, so the wait for one wasn't too long. The next skycap was kind and we lucked out that the TSA line was bizarrely short (though the TSA employee lived up to Orlando's reputation of not being kind.) The flight was on time, and soon I was in Huntsville. There, the same guy who did not enter my need for help before was waiting with a wheelchair. He was apologetic. We discussed the problem, and I asked about him. Found out he was a student at the local university and was studying computer science while also working long hours at the airline. He became the last angel of the trip as he made sure I not just got my luggage but he stayed with me until I was at my parent's side once more - much to my mom's relief. She panicked the whole trip! </p><p>And so we have the angels of my trip to Disney. It was so much more than expected. Every single person came at just the perfect moment to make my travel adventure go so much better than expected. I am so very, very grateful. </p><p><br /></p>ddraigswifehttp://www.blogger.com/profile/07952795229433613418noreply@blogger.com0tag:blogger.com,1999:blog-1941593586165218078.post-5728840695116931572023-10-09T02:15:00.003-04:002023-10-09T02:35:45.846-04:00On Visiting Disney World While Disabled (How I made it work and what I saw)<i>It was big. Very big - The idea that in the middle of my cancer battle, while also balancing Ehlers-Danlos Syndrome, Dysautonomia, and the other conditions it brings along I could, somehow, travel alone from Tennessee to Florida and to Disney World for four days. I knew I had to do it, though. The break was needed, and the desire to prove that this broken body could make the dream to experience Disney as an adult happen. A lot of thought, research, and advanced planning went into it. Here's what I did. I hope it helps others.</i><div><br /></div><div><b>The Flight:</b> When buying my tickets, I reached out to the airline to say I would need a wheelchair at all legs of travel. I also backed it up with a call to the airport a week before the flight to review their offerings and inform them I was traveling solo. You need to reserve as much energy as possible as travel days are so draining even for the able-bodied. Make sure to have tip money for the Skycap employees who will help you get from curb to gate. I knew my checked bag was going to be overweight on the flight out due to bringing IV fluids along, so made sure the airline and I had worked that out ahead of time. You also should contact TSA Cares with your information. They may not call until the day of your flight, but they will email back details on what to expect with TSA and acknowledge any accommodation you bring up, like traveling with liquids, medications, implanted devices etc. Give yourself extra time as you will have to wait for your chair, and sometimes TSA takes longer as you will get patted down and swabbed. </div><div><br /></div><div><b>The Resort: </b>It was the best decision ever to stay at a Disney resort. I wanted to spend the most time at Epcot and Hollywood Studios, and several resorts had direct Skytrams to there. No having to cram into a bus or the Monorail! The Skytram works so well for wheelchairs and scooters too with lots of space and no pressure to rush on and off. I stayed at Pop Century and found the staff to be incredibly helpful. I used Disney's recommended scooter rental company, which awaited me when I arrived, so no waiting around for delivery. An employee helped me get the scooter to my room and then helped with my luggage after seeing I was traveling alone and had physical limitations. </div><div>I had a handicap-accessible room and, while the shower wasn't the greatest for accessibility, the rest of the room had enough space to store and turn the scooter or move a wheelchair around. However, the door was difficult. It was too heavy to open one-handed while moving the scooter forward with the other. I managed, but it was frustrating at times. </div><div>The food options at the resort were great, with healthier options on top of standard fare like pizza. The staff was willing to work with some dietary needs and modify dishes. The in-room cooler and counter above it allowed me to bring my travel blender and items for making protein smoothies for breakfast - something I need with my GI issues. There were microwaves in the resort's eatery for those who needed it. </div><div><br /></div><div><b>The Parks</b>: Disney has the DAS program for those who cannot handle long lines and require assistance. It is vital to set this up as soon as you can, which is 30 days before the trip. You'll be interviewed by a Cast Member on video chat as to why you need it and your picture taken through there. Then, they'll set up DAS-Advanced, which allows you to pick two rides each day ahead of time, so you already have a partial schedule before even arriving! Once in the park, you then can choose one ride at a time with the regular DAS system on the Disney park app, even in between the ones already scheduled! I knew exactly when to show up for a ride or show and never was in line for more than 10 minutes. The Cast Members were super helpful and moved the scooter from the entrance to the ride to the exit and made sure I could easily access each ride. There were some fun in-character engagements during those, especially in Hollywood Studios. </div><div>The Cast Members (employees) really try to make the visit magical all throughout the park, especially when they see someone who is differently abled. Even the support staff in places like the grab-and-go eateries were helpful. At one place, it was very crowded. One of the employees noted balancing my food tray, drink, and bags on the scooter would have been tough, so they took the tray, found me a place to sit, and even went to get my drink for me. If you have special dietary needs, letting restaurants know ahead of time can ensure accommodations. I ate at Prime Time and they had a menu specifically for those with restrictions and also made a small change on the spot for me with a side dish. The crepes place in Epcots' France area also asked about restrictions and modified my dessert to work around a restriction. </div><div>From the rides, to the shops, to even those monitoring the bathrooms, nearly every Cast Member was working to make sure the experience was magical. I have never been to a place so open and friendly to and inclusive to the differently-abled. This made my visit to Disney as a disabled adult even more incredible. I could relax and submerge into the magic of Disney and have moments where I felt like a kid again.</div><div><br /></div><div><br /></div>ddraigswifehttp://www.blogger.com/profile/07952795229433613418noreply@blogger.com0tag:blogger.com,1999:blog-1941593586165218078.post-13582576356640229372023-10-04T22:32:00.007-04:002023-11-09T17:28:03.383-05:00On August 26th, 2023 (You Learn to Like Pink)<p><i> One Year. August 26th marked one year from when I learned I had Stage 3 Triple Negative Breast Cancer. I'm alive. I'm still fighting. We don't know if I'm free of it yet. So much has had to be thrown at it. But I am here. </i></p><p><i><br /></i></p><p><i>Here's a reflection. </i></p><p><i><b>"PINK" </b></i></p><p>You’ll never forget where you were on that day when the phone rings with results</p><p>The moment in time when you learn your body has turned against itself</p><p>Grown things it should not and created dangers to your life</p><p>Your heart stalls. You forget how to breathe</p><p>The color drains from your face as reality sets in</p><p>The voice relaying their apologies along with what kind it is</p><p>Next steps, how they’ll do all they can, but more tests need to be run</p><p>At home you get lost looking it up</p><p>Throwing yourself into research, statistics, and the fear grows</p><p>The fog sets in as scans are done, blood drawn, and you wait</p><p>And pray they don’t find it anywhere else</p><p>The meeting with oncology with all the big terms</p><p>Of big drugs and big treatments with big side effects and long times in the unknown</p><p>But it is a chance to survive</p><p>You’re sent home with a binder, flyers on support groups, resources</p><p>And items in pink</p><p>You learn to like pink</p><p>Through preparation, and the “thoughts and prayers” from others</p><p>And the insurance calls and the many nightmares </p><p>You put plans in place and pieces together and the day comes</p><p>The needle inserted, medications given to help with side effects</p><p>Then the drugs infused from a nurse in a hazmat suit</p><p>Because of how volatile the cocktail is</p><p>The red devil that could be part of the angelic cure</p><p>A talk with the nurses. Reminders of what to expect</p><p>You are going to get worse before better</p><p>Hair will fall out, taste will change</p><p>You’ll vomit, be weak, and it will hurt</p><p>But you need to eat and rest and try to keep your strength</p><p>Looking at those around you in various phases of battle</p><p>A bag given with handmade comfort items</p><p>And other things to see you through</p><p>More items in pink</p><p>You learn to like pink</p><p>Days and nights blend until you don’t know where you are</p><p>The simple act of breathing, talking, and eating, takes so much</p><p>The isolation as those whom you hoped would call</p><p>Or maybe those who would even visit</p><p>They’re all quiet or excuse with “don’t want to disturb”</p><p>You get it, they are uncomfortable. But it hurts as bad as the drugs do</p><p>Those moments when someone does reach out</p><p>A call, a card, a text, a package</p><p>It lifts your soul when you can barely lift your head</p><p>The head that no longer has hair</p><p>You fight, and pray, fight, drag through, battle on</p><p>Counting down cycles as your counts look like hell</p><p>And you hope your body can hold up through this curse that could be the cure</p><p>Wigs, scarves, earrings, bracelets, Soft shirts, awareness gear</p><p>Support group calls and webinars, Appointment after appointment</p><p>There’s so much pink</p><p>You learn to like pink</p><p>And finally, the infusions end and you get to breathe</p><p>A few short weeks to get some strength, put on some weight</p><p>Give those supporting you a chance to rest, as they are exhausted too</p><p>A break before the next round of the fight starts</p><p>Surgery to cut the remnants of the offense</p><p>The part of your body that went haywire now removed</p><p>Along with so much more of you.</p><p>Incisions, drains, drama, and waiting on pathology</p><p>The wait is agonizing. Was there more, did it spread </p><p>The weeks of radiation that follow</p><p>Burns and blisters. Exhaustion worse than ever before</p><p>But your hair is starting to come back,and food doesn’t taste like metal anymore</p><p>There are talks of follow-up treatment</p><p>Supportive medications, lingering pill chemo</p><p>The wait…. So much waiting, Months in limbo before the next scan</p><p>And all along the way</p><p>You learn to like pink</p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhY8wWs6Z1JITmMj2HwNOxnkKcShXwV9kMIXrJA-FpnwfluUx9Tz3k3NYlPiyxkXSb01FM8Zink8zvGDOYXnu7ZReD4buPUMPZgI1Hbv2D5MJOL8OopPttkymhnd3KjrLacqflsDaMGysm7LKerfI3b_ixiedTyEbAplGUQU__xYAHYLEn092ubTSmeaCgP/s3264/20221108_140027.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="3264" data-original-width="2448" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhY8wWs6Z1JITmMj2HwNOxnkKcShXwV9kMIXrJA-FpnwfluUx9Tz3k3NYlPiyxkXSb01FM8Zink8zvGDOYXnu7ZReD4buPUMPZgI1Hbv2D5MJOL8OopPttkymhnd3KjrLacqflsDaMGysm7LKerfI3b_ixiedTyEbAplGUQU__xYAHYLEn092ubTSmeaCgP/s320/20221108_140027.jpg" width="240" /></a></div><br /><p><br /></p>ddraigswifehttp://www.blogger.com/profile/07952795229433613418noreply@blogger.com0tag:blogger.com,1999:blog-1941593586165218078.post-9762846321417394842022-09-11T01:37:00.002-04:002022-09-11T12:55:26.799-04:00On Living<p> I want to live.</p><p>It screams in my head all day and night.</p><p>I want to live.</p><p>Even knowing for 5 years now that I wasn't meant to make it past my 50's.</p><p>I want to live and prove the doctors wrong.</p><p>Now. Cancer. Rare triple negative variant.</p><p>Numbers like only 10% of breast cancer patients get it.</p><p>Survival rates are high if not in stage 4, though reoccurrence is just as high.</p><p>But I want to live.</p><p><br /></p><p>This giver and helper, whom fights for others every day.</p><p>Locally, regionally, globally. With every breath I take.</p><p>It's a bad day if I've not helped at least one person.</p><p>Or made someone smile.</p><p>I want to live.</p><p><br /></p><p>When every big positive moment is crushed by negatives just as big.</p><p>A perfect-for-me home in a cute little town. </p><p>So excited to move and start anew after so much pain.</p><p>Triple-negative, stage three, cancer.</p><p>The new start starts with this stigma. Will they even care to know me for me?</p><p>But I want to live.</p><p>Getting to see friends and former co-workers at a luncheon. Leaving happy!</p><p>My truck and I were damaged on the way home from it.</p><p>These two latest examples in a line of so many it is overwhelming.</p><p>Any time something extraordinary, something positive happens.</p><p>Any time I tell people about these good things and allow the happiness to show</p><p>Every time it gets knocked away, stomped on, kicked apart, destroyed.</p><p>Yet I want to live.</p><p>Even if it is just for the little good things that happen versus the big.</p><p>Like making someone smile, or a moment of discovery in nature.</p><p><br /></p><p>This giver and helper who races to help others</p><p>Who fights against a genetic nightmare so others can get better treatment.</p><p>This friend, niece, cousin, who drives my damaged body many hours north and south every year.</p><p>Who calls and messages long ahead of time to try to make plans because I love you all.</p><p>Who gets "call when you get here" when I'm not sure there will be time or energy.</p><p>Who knows I don't mean enough to any of you to do the same. </p><p>No one ever visited me, and there was so much I wanted to show you!</p><p>No calls in between visits unless I made them to you.</p><p>Yet, I want to live.</p><p><br /></p><p>The helper of helpless cases as my online friends call me.</p><p>But they know I'll jump in and be there at a moments notice.</p><p>Now begging, pleading, for help from those around me near and far.</p><p>First in the winter as my world of 15 years came apart.</p><p>When I had to rebuild, piece by small piece, into something better.</p><p>The silence, the lack of help, was intense then. </p><p>The actions of someone I barely knew anymore put a roof over my head</p><p>So I can live.</p><p><br /></p><p>Now, the silence, the lack of action, is intense once more.</p><p>I don't need "You are so strong, brave, resilient."</p><p>I need rides to doctors or ways to pay for rides until the truck is fixed. </p><p>There's not enough to cover sudden repairs and rentals on top of bills.</p><p>Not when one is in the government's tight fist due to disability.</p><p>And I want to live.</p><p>When treatment starts, it's going to be making sure I'm nourished.</p><p>Healthy delivered meals that are easy to heat and eat.</p><p>You ask how you can help. Or say you feel helpless and don't know what to do.</p><p>I put out what I need the most on social media, instant message. texts, calls.</p><p>Silence.</p><p>But I need to get to these things to live!</p><p>Don't you want me to? </p><p>Or do you think my damaged existence and its bad luck has run its course?</p><p>I don't. I know there is more I was meant to do.</p><p>More I was meant to see. </p><p>I want to live.</p><p><br /></p>ddraigswifehttp://www.blogger.com/profile/07952795229433613418noreply@blogger.com1tag:blogger.com,1999:blog-1941593586165218078.post-9514014074947809552022-06-28T02:32:00.001-04:002022-06-28T02:32:43.178-04:00On Deconstructing Part One: The 14th and Women<p><i><span style="font-size: 13.5pt;">*Note* This is a multi-part
series that's taking days to maybe weeks to write. Currently, three parts are
in mind: The Women, The Others, and then The One </span></i><span style="font-size: 13.5pt;"><o:p></o:p></span></p><p><span style="font-size: 13.5pt;">Oh! It's just turning over the ability to have an abortion over to the states again is all! I've heard it over and over.
That and how precious all life is. Yes, <b>all</b> life is precious,
very much so. </span></p><p><span style="font-size: 13.5pt;">But this ruling had only partly to do with abortion and the politicians who repeatedly deny support to the children and families
once the babies are born or do anything substantial to make it easier to
prevent the pregnancies to even begin with. It partly has to do with what
happens next with those women and families to keep them controlled by certain factions. And, it has even more to do with the vagueness of the
14th and what is likely next.<o:p></o:p></span></p><p><span style="font-size: 13.5pt;">In the end, it affects Everyone. <o:p></o:p></span></p><p><span style="font-size: 13.5pt;">The ruling blew the door open
to everyone's privacy, autonomy, and basic rights. It says that, depending on
the state you live in, you may not have any rights or have limited ones to plan
a pregnancy. Your ability to handle a crisis pregnancy from rape or incest or carrying a child who will suffer before dying young in a state where that same party cries over the cost of the disabled is even more restricted or outright gone there. To prevent pregnancy in the
first place is restricted and controlled by someone else totally disconnected and the other half of what it requires to get pregnant... the
male... has nothing holding him back and even is supported with tons of
options to make them want more sex. There's little consequence to them when the
pregnancy happens, though, and lots of blame on the woman. Also, if you're needing to take a hormone for other
medical reasons, there's now fear of repercussions. And what about those who
want to protect their already existing family or frail future from the narrow-minded
"should have taken better care then" who are themselves not caring what caused the situation in the first place? All of the above is scary enough. It's now worse in
these states. <o:p></o:p></span></p><p><span style="font-size: 13.5pt;">And, no, you can't just
"vote" it away. And those who are most affected cannot just
"move out" of the state or leave it temporarily. These are the at-risk, the lower income, the minorities, the children, those caught in religious extremism, and more. This goes far beyond
the right to have an abortion.<o:p></o:p></span></p><p><span style="font-size: 13.5pt;">It affects situations like the 11-year-old
two counties over here in VA who just gave birth to a girl conceived by her 13-year-old brother raping her. There are so many aspects of their lives being
covered up with "religion" as the excuse so three young lives are in
crisis. Even away from it the governmental system is so broken, their situation is
bleak. I could write an entire blog alone on the scenario around her and others
like her now more stuck than ever in a system engineered to bring a baby to
birth under "Pro-Life/Anti-Abortion" but with politicians who will
not support them after the birth and this system set up to devastate the victims like children and disabled.<o:p></o:p></span></p><p><span style="font-size: 13.5pt;">Here is an example: In my own
first pregnancy, which thankfully ended in miscarriage, I was on birth control
but also an antibiotic. It failed the night my first husband went into a drug
and alcohol spurned rampage through the house, then took me against my will,
leaving me bruised and knowing I could not say a word, or it would be much
worse. Had the miscarriage not happened, I would be the mother to a now 19-year-old, having been stuck and dealing with custody arrangements, forced to
engage with someone who abused me for years ... or without him, because he
didn't pay anything else so why pay child support and the struggle that would
also bring on. <o:p></o:p></span></p><p><span style="font-size: 13.5pt;">At least I had a family and college education and career, though. Imagine someone who didn't have a
supportive family or a career that paid enough for childcare and insurance. Who
would be working multiple jobs and barely gets to see their child to raise them
and leaves them in the hands of strangers for all but a couple hours a day. Who
has to handle one political party's refusal to keep or expand help like
childcare vouchers, housing help, SNAP, Medicaid, welfare, paid parental leave,
etc., and watch <i>both</i> parties' refusal to set up transitional
programs. It is an ALL or nothing system- you live ALL on the system or none
and the results are often catastrophic. There is no real in-between. The
desperation and knowing end up with women trying to get an abortion be it the
pill form that terminates before 10 weeks or one more involved. This is
especially true before ACA when birth control wasn't required to be covered,
but even now after because it can be so costly.<o:p></o:p></span></p><p><span style="font-size: 13.5pt;">My second situation was when
the decision was made to stop trying for kids in my second marriage. Both of us
had genetic illnesses they could inherit. I was getting sicker constantly and
knew I'd be unable to give a child the attention and upbringing they deserved.
He had his own issues that needed more focus, and it wasn't fair to put a child
into that. We were called selfish by family members and churchgoers. Then
my OBGYN hit me with the "I need your husband’s permission for you to get
your tubes tied" when I learned I couldn't take most birth control anymore and an
IUD was out of the question with my condition. This was because I was still
child-bearing age! Never did get that done. So many others end up with this scenario, and now they and their lives and children's lives are at more risk.<o:p></o:p></span></p><p>
</p><p><span style="font-size: 13.5pt;">In some states with these
politicians who are banning abortion, some are already restricting certain
birth control, two are criminalizing some parts of having a miscarriage, some
are eliminating emergency contraception. They've been restricting what is being
presented in public schools and eliminating handing out free condoms while
students who give birth have to be back in class within a week. Pregnancy does
not qualify for homebound instruction in most states anyway so education is interrupted. </span></p><p><span style="font-size: 13.5pt;">So what are women to do? The painful progress forward around abortion, not just the ability to get one but the ability to prevent one from even being needed, has taken steps back. <o:p></o:p></span></p><p><span style="font-size: 13.5pt;">Families everywhere are going to suffer. Our country will suffer. </span></p><p><span style="font-size: 18px;">In Part Two, there is "The Others" a side of this that is just as scary... the next steps already being promised pursual by one Justice. The ramifications of weakening the 14th are just getting started.</span></p><p><br /></p><p><br /></p>ddraigswifehttp://www.blogger.com/profile/07952795229433613418noreply@blogger.com1tag:blogger.com,1999:blog-1941593586165218078.post-66742007439330097762021-10-11T03:17:00.004-04:002023-11-09T17:29:32.295-05:00On Where The Road Led<p>Envision a road. It's a one-way street but has two lanes.</p><p>A woman is walking on it alone and struggling.</p><p>She has a large bag on her back, baggage from the past.</p><p>Every few steps she takes an item, looks at it, talks to it, then drops it.</p><p>In time, it was a lighter load and she was able to manage better</p><p>After a time, another joined her on the road.</p><p>He too had a bag on his back with baggage from the past.</p><p>But they soon were walking side by side and talking.</p><p>Before too long they were hand in hand.</p><p>Instead of the baggage, she was busy tending to his needs.</p><p>He did not know much about the road so she had to show him or do many things for him.</p><p>He couldn't eat much from places they came across, so she made special meals.</p><p>She didn't know much about the technology he carried with him, so he taught her.</p><p>They loved to travel together and enjoyed all of the imagination that comes from watching the night sky.</p><p>And together they continued on.</p><p>Within a short time she began to limp, limbs became damaged easy, the pain was so great.</p><p>Yet she continued to do more than her body could accept. </p><p>He was struggling with his emotions and memory, and she worried so much for him.</p><p>Along the way mistakes were made by him and he'd look away for long periods of time. </p><p>She forgave him and would try to move forward, though she was getting tired.</p><p>But he didn't seem to forgive her for any mistake she made. </p><p>She asked those they sometimes traveled with and those they knew from before on what he was upset about.</p><p>Were the perceived worse offenses so terrible? No one seemed to think so.</p><p>And so she kept walking, though now with a divider between the two, though side by side.</p><p>Her exhaustion was growing, but she leaned over the divider to tend to him while walking.</p><p>Sometimes he'd help her get to the side of the road for something needed.</p><p>But any time an injury would halt her, he'd linger a day or two but then move forward again. </p><p>She had to catch up or be left behind or watch him struggle as he still didn't know so much of the road.</p><p>The road became full of potholes.</p><p>Her injuries grew worse but she kept taking steps forward.</p><p>She found solace in the technology he taught her about, found an escape from the pain.</p><p>After all, he'd been escaping this way every day from their first moments together.</p><p>But that was an offense too she soon learned, and by now she was fighting fear.</p><p>He was walking on the far side of the road, away from her.</p><p>She'd go to the divider multiple times a day, to talk, to hand food, to offer help on something.</p><p>He'd look annoyed, but then complain that she wasn't doing it enough when around others.</p><p>It went on and on as she stumbled forward.</p><p>Some came and stood in the divider and tried to get them to walk closer again.</p><p>She'd walk along it, hugging it and doing what she could while hurting.</p><p>Then one day, he stopped responding at all.</p><p>And then pointed out that he was getting off at the next fork in the road.</p><p>She needed to prepare to be so damaged and continue forward on her own.</p><p>And now here she is, looking at that upcoming fork and wondering how she can.</p><p>She worries as he still doesn't know the road very well. </p><p>She's been doing so much for him... now she has this tiny window to finish showing him so he maybe can walk on his own.</p><p>She'll do this because she still loves him so.</p><p>And she'll do this while she has to figure out how to limp forward on her own too.</p><p>So damaged. So tired. But so determined.</p><p>Change is coming. She has to be ready.</p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaZ3s9OnSj-DRgTOPgqz7BaU__Ub9vx3KMrCNXwcaNmFtfs1lqR62KN2sVumtmiKq8Iz_kPqcP9tFm0KiwuqDILKW9PHOkLYIrESXBkOeLIn2ZlLOVTBqEDe36yyFY3iXThP6KV28hL2dN1MI_7ktRcZD_8qcCqOQDlFxzns1TDuj5dnBTvqA34jGHacYn/s512/91.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="384" data-original-width="512" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaZ3s9OnSj-DRgTOPgqz7BaU__Ub9vx3KMrCNXwcaNmFtfs1lqR62KN2sVumtmiKq8Iz_kPqcP9tFm0KiwuqDILKW9PHOkLYIrESXBkOeLIn2ZlLOVTBqEDe36yyFY3iXThP6KV28hL2dN1MI_7ktRcZD_8qcCqOQDlFxzns1TDuj5dnBTvqA34jGHacYn/s320/91.jpg" width="320" /></a></div><br /><p><br /></p>ddraigswifehttp://www.blogger.com/profile/07952795229433613418noreply@blogger.com0tag:blogger.com,1999:blog-1941593586165218078.post-75139674032554412412020-11-24T23:33:00.000-05:002020-11-24T23:33:17.940-05:00The Mixed Up Year<p> 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.</p><p>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.</p><p>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. </p><p>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. </p><p>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...</p><p>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.</p><p>Maybe I shouldn't have, but I stayed.</p><p>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.</p><p>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. </p><p>Won't even go into the stress of this election and how my circle reduced even more from that.</p><p>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...</p><p>And they didn't.</p><p>And it got worse. A lot worse.</p><p>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. </p><p>It has been quite the mixed-up year for sure.</p>ddraigswifehttp://www.blogger.com/profile/07952795229433613418noreply@blogger.com0tag:blogger.com,1999:blog-1941593586165218078.post-37957828072843824442020-09-11T21:51:00.003-04:002020-10-12T15:37:27.439-04:00On What's in the Bucket...<p> 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.</p><p>I do.</p><p>Kind of.</p><p>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.</p><p>So... here's Holly's Bucket List </p><p>PLACES TO GO</p><p><span> Return to Yellowstone</span><br /></p><p><span><span> Return to Colorado in the autumn and listen to the elk bugle one more time</span><br /></span></p><p><span><span><span> Finish the Lower 48 with visiting Oregon, Washington and California</span><br /></span></span></p><p><span><span><span><span> Finish the 50 states by visiting Hawaii and Alaska and s</span></span></span></span>tand on an active volcano</p><p><span><span><span><span><span><span> Visit more of Europe after going back to Wales</span><br /></span></span></span></span></span></p><p><span> Visit Canada</span><br /></p><p><span>THINGS TO DO</span></p><p><span><span> Spend a couple weeks going back to storm/tornado chasing</span><br /></span></p><p><span><span><span> Record a CD of songs and readings for friends and family</span><br /></span></span></p><p><span><span><span><span> Become an Inspirational Speaker</span><br /></span></span></span></p><p><span> Go fishing and actually catch a fish</span><br /></p><p><span><span> Ride horses one more time (would have to be adaptive)</span><br /></span></p><p><span><span><span> Write and publish at least one more book</span><br /></span></span></p><p><span><span><span><span> Have someone seriously promote the Midnight to Morning trilogy</span><br /></span></span></span></p><p><span> Visit the ocean. Often. </span><br /></p><p><span><span> Go on a Compassion International tour to meet one of my sponsored children </span><br /></span></p><p><span><span><span> Live simply out of a camper so I can travel more</span><br /></span></span></p><p><span><span><span> Overnight in the cabins at Wild Heart Ranch in Oklahoma and help feed the babies and visit the other animals there</span></span></span></p><p><span><span>PEOPLE TO MEET OR SEE</span></span></p><p><span><span><span> As many of my online friends as possible </span><br /></span></span></p><p><span> Keep visiting family as much as possible, no matter where they live</span><br /></p><p><span><span><span><span><span> Either Amy Grant or Michael W. Smith (or both)</span><br /></span></span></span></span></p><p><span><span><span><span><span><span> Meet and spend time with Selah</span><br /></span></span></span></span></span></p><p><span> Nicole Nordeman </span><br /></p><p><span> Attend a Secret Garden performance</span><br /></p><p><span><span> Attend more Selah concerts</span><br /></span></p><p><span> Attend as many concerts as possible. Period. Especially smaller acoustic ones of my long list of<span><span> </span>f</span>avored artists</span><br /></p><p><span><span><span><span><span><span><span> 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. </span></span></span></span></span></span></span></p>ddraigswifehttp://www.blogger.com/profile/07952795229433613418noreply@blogger.com0tag:blogger.com,1999:blog-1941593586165218078.post-56366948147488413402020-02-28T02:50:00.003-05:002020-03-13T14:08:32.600-04:00On... 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.<br />
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.<br />
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.<br />
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.<br />
And then it died...<br />
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.<br />
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.<br />
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.<br />
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.ddraigswifehttp://www.blogger.com/profile/07952795229433613418noreply@blogger.com0tag:blogger.com,1999:blog-1941593586165218078.post-34535651293639218632019-09-03T19:35:00.001-04:002020-05-04T01:16:56.790-04:00On What's Up With HollyI guess this is another long-time coming one. I have been avoiding answering questions about it, choosing to focus on Owen and his breakthroughs instead.<br />
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On August 9th, I made the following post on Facebook:<i> "Who takes care of the caretaker? Who watches out for the person who is always watching out for others? Who comforts the one who tries to comfort others? Who helps the helper? Who comes alongside the leader who is growing weary of being made to lead?"</i> Those who know me well know I am all of these things, so I was immediately bombarded with "What's wrong?" and "What happened?" messages. I've ignored most of them, as my replies have leaned towards biting and sarcastic, and for that, I'm sorry.<br />
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This genetic condition and its "friends" are very isolating. I'm too worn out from the daily battles to do much in the community besides the weekly quilting ministry on Saturday mornings. I sew for charity - for kids in foster homes, women in safe houses and kids with terminal illnesses. Even then, after the three hours of it, I have to sleep at least 2 to recover. Outside of visits to the gym for physical therapy, numerous draining specialist appointments, and the few errands I can run, I am home. I work from home, guiding teenagers through their education through Bridgeway. On the side, I'm mentoring young adults who used to be my students back when I taught in public schools. I am a caretaker for my husband through all that his PKU has thrown at him. On the side, I'm volunteering for Dysautonomia Support Network, welcoming in new members and helping those who are struggling with the same conditions I have as well as others. I'm too worn out to do much else after giving my all to so many. There is also this...<br />
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Over the past eleven years, my home has virtually brought me all over the world and across time and space. From England to Sweden, California to Texas, Ohio to Massachusetts and more. It started when Owen built me a new PC during the 2008 Olympics. Within a few days, I was being introduced to a dozen of his online friends. This was much different than the message boards I belonged to. This was a massive online game full of roleplaying as well as game content.<br />
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That night, my first story began, and the months of isolation started to fade. In the nearly five years I was in Star Wars Galaxies, my characters made friends with dozens of others and stories detailed and long enough to fill a book were created. Some of those players became real friends, like Leaf in Sweden, Josh in Mass, and my "brother" Alex. Some remained casual contacts and, after the original version of the game was killed off 3 years later, we started over in Star Trek Online. There, more friendships grew, like with Kris aka Wookiee who I love to go visit out in Ohio. While the stories in SWG were great, I was still learning how to roleplay well and it took a while to gain a good reputation for my stories. In Star Trek Online, I ended up in a fleet of SWG refugees... before long, I was voted to be their leader. I became a mother hen, ear to bend, source of advice, and Storymaster for distractions from life. Since then, some of the best stories ever were created. And, along the way, I made new friends. Caleb, Crio, Fletcher, and Wayne/Rock joined my online family.<br />
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I was no longer isolated and alone because of this genetic nightmare. I had something to look forward to every day. It kept my brain engaged and distracted from the pain that never. ever. stops. For five years, our little fleet lived on their station "just north of nowhere" and thrived. Personal stories grew in ways I could never have imagined. Adventures and moral quandaries were in abundance. It was epic!<br />
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There were some struggles. First Fletcher couldn't be there as much. Then Kris was really struggling with really bad depression, and we worked around it. Then Crio's job had him working 50-60 hours and Caleb moved so he had super long drives, and we maximized when they could be on. Josh only roleplayed with me, and he had a lot of struggles too. We did the best we could, and the stories he and I created were some of the most beautiful ones. Rock and I had a special connection and every single one of his characters (8 of them!)were securely wrapped around the stories of 5 of mine. Even when his schedule made it so he had to be there less, we still found ways to keep it alive. They all mean the world to me.<br />
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Then it all stopped 3 and a half months ago. Rock had been acting a bit "off" for 2 months prior in those moments when he could be in-game. At the end of May, he vanished. No texts, no replies to email, nothing. After 6 weeks, I mailed a letter to his house addressed to him or "whomever else was reading it." I knew from searching area obituaries and GoFundMe type pages that he wasn't dead. Someone read every text I sent. It was all met with silence. Whoever is reading it (and it isn't Rock) they either feel I'm not worthy due to being an "online friend" despite expressing worry and reminiscing about time spent as a group etc... or he did something they are embarrassed to reveal, and I've been hesitant to search about. Whatever it is, I have been consumed with worry to the point of finding it hard to sleep some nights. I was begging God to keep him safe and bring him back to us or at least let us know what was going on. The others are depressed over him missing and are unsure of what to do. They aren't showing up much. I designed a story which didn't have his characters in it, which was difficult, but it's only going to hold us for so long. I don't know what to do, and it is upsetting.<br />
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I went to an emulator of Star Wars Galaxies because Alex and Josh were there. Both had stopped showing in Trek for roleplay stories. In SWG, we were hanging out and running some stuff together, and Alex and I had even started a new story, but then that stopped too.<br />
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I give, serve, help, and care with everything I've got! My source of distraction, interaction with others, the moments where I received as much as I gave, and what kept me going when this life is so incredibly hard feels like it is fading away after 11 years. It might not be, maybe it is just a large lull, I don't know. What I do know is that it has had a big impact on me. I've lashed out with bitter comments to some, been sarcastic to others and am trying to figure out how to equalize again... That is "what's up with Holly."<br />
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*Disclaimer for those who will say "Oh you can sew more or write more!" I can get about 60-90 min of sewing in at home before my shoulder/back/insert-random-joint flares so badly that I have to stop. For writing... the government is making it impossible to do what I want there. I want to push these novels more, expand more, write across more platforms as so many have asked me too, but if any of it takes off and I make a few dollars over the max allowed, I'll lose half my income and medical care. There are too many ups and downs... too much instability in income. I had to turn down a proper publisher because to take the contract (something unstable) I'd have to give up my stable position at Bridgeway. The disabled are forced to remain in governmental poverty. Not being able to do more where I've been thriving has also lead to bitterness.ddraigswifehttp://www.blogger.com/profile/07952795229433613418noreply@blogger.com1tag:blogger.com,1999:blog-1941593586165218078.post-22015232560352918922019-08-23T01:08:00.003-04:002019-08-28T00:32:48.660-04:00On a Breakthrough and PKUAs many of you know, our household is a complicated one. I have <a href="https://www.ehlers-danlos.com/what-is-eds/" target="_blank">Ehlers-Danlos Syndrome </a>with <a href="https://www.dysautonomiasupport.org/" target="_blank">Dysautonomia </a>and a whole host of comorbidities. My husband was born with a different genetic illness, <a href="https://pkunews.org/what-is-pku/" target="_blank">Phynelketouria or PKU</a> and has some of its comorbidities as well. Between the two, we are frequent visitors to area hospitals for various specialist appointments and therapies.<br />
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We also were making two separate meals for every meal of the day. I need high protein, at least 60 grams a day. My husband could have just 16...yes, 16. Basically, he had to be a soy-free, bean-free vegan since birth or risk brain damage. Starches, some fruits, and some vegetables and mushrooms were what he survived on. The rest came from a foul-smelling and tasting (and expensive!) metabolic formula with the amino acids his body could absorb and the one he could not, phenylalanine, removed. Low-phe foods could be purchased but were incredibly costly (12 dollars for a box of pasta!) We made a lot of it from scratch instead using various recipe books. But, even with the Diet for Life program keeping him on low-phe/low-protein intake, his phenylalanine levels were high - usually up around 11 and it was doing damage. Those levels led him to develop dopamine responsive dystonia (basically pre-Parkinsons,) memory issues, develop severe osteoporosis, be chronically underweight, suffer from depression, and more. Recently, though, everything changed!<br />
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See, there's this little pharmaceutical company called <a href="https://www.biomarin.com/" target="_blank">Biomarin</a>, and Biomarin does what Big Pharm will not... it focuses on the rare disorders, specifically metabolic disorders. Owen has been on their first PKU drug Kuvan since it came out. At first, he responded beautifully to it... but eventually it lost its effectiveness on him. This is mostly because he has an incredibly rare mutation of PKU and not the common "Classic" PKU. We were crushed when his levels started spiking again. The nurse assigned to him... yes, every Biomarin metabolic patient has a nurse assigned to them through the company... kept saying to hang on. That's because Biomarin wasn't done with just Kuvan. No, they had a breakthrough coming right behind it, and it was BIG.<br />
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In September 2018 the drug, codenamed PegPal, was FDA approved. It short, it is a coated, genetically modified, bacteria which eats phenylalanine - the amino acid he cannot process and which builds up in his brain and causes damage. It is delivered through injections which are titrated up to x amount daily. In February, Owen started it and in June the most amazing thing happened... He ate a hamburger... and steak... and chicken... and a corndog... and for the first time ever we had a normal meal where both of us ate the exact same thing. His phe levels? ONE! That is "normal human" levels!<br />
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The change has been amazing. With the lower levels, he is starting to come out of his shell. People who know him well are saying he's more talkative and engaging. He's started hanging out with friends instead of staying home and isolating. He's getting back into his hobbies as well, all because his brain isn't constantly under attack anymore. He is starting to put on weight too, which is a huge relief for his entire medical team. That battle has been a fierce one, with him being catabolic for most of the past 20 years. He's also enjoying trying out different foods.<br />
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Imagine what it must be like for him right now, having such a limited diet and suddenly being allowed to eat everything available. He says he feels like he's in another country every time something new is presented. Together, we've been finding out what his likes and dislikes are. All beef is in... anything cheesy like ricotta or mac n' cheese is out. Chicken depends on how it is made. Fish seems to be okay for now. He's loving being able to have junk food like corndogs. (I hope he quickly grows out of that phase.) And all of this because a little pharmaceutical company focused on the rare and made a BIG medical breakthrough.<br />
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That's another thing, this kind of modification of bacteria has so many other possibilities! Maybe it could clear up the plaque in a dementia patient, or eat the amino acid an MSUD patient cannot process. There are so many disorders which can be treated with this kind of protocol. It is going to be incredible!<br />
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We are on a wild ride right now, and I am so grateful for this major breakthrough!<br />
#PKU #Palyziq #Biomarin #RareDisorder #MyHusbandCanEatNormally #BiomarinRocksddraigswifehttp://www.blogger.com/profile/07952795229433613418noreply@blogger.com1tag:blogger.com,1999:blog-1941593586165218078.post-14988181960183695652019-05-24T01:31:00.002-04:002019-05-24T22:14:26.498-04:00On Community - a DSN StoryWhew! OWS Cycon was quite the whirlwind after so many months of planning. However, it was a success, and I am very ready to get back to my normal blogging.<br />
That being said, I have been waiting anxiously to get this one out...<br />
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In January of this year, I was asked to start volunteering with the<a href="https://www.dysautonomiasupport.org/" target="_blank"> Dysautonomia Support Network. </a>After training, I became an admin on their biggest Facebook page, "Divas Dudes and Zebras." It quickly became my responsibility to accept and welcome new members. Around that time, DSN was planning for their annual Neuro-Connect Summit. I was invited to attend but was hesitant. First, there was the cost. Then there was the "I don't know anyone here yet and it scares the crap out of me" excuse. However, Cathy, my team lead there, wouldn't take no for an answer. She made sure I knew I was welcome and had a room covered. I just had to pay for the Summit itself. I thank God she persisted because...<br />
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Well, because I have NEVER in my life experienced anything so absolutely amazing, unifying, terrifying, and wonderful as that weekend.<br />
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As we got closer to the Summit, some members had shown interest in meeting me. I was also eager to meet Cathy and the few volunteers I had been getting to know. I arrived and was almost instantly greeted by one volunteer and then another. Once I deposited my stuff in the room I was sharing with two others, and figured out where I was supposed to be, the fun began. I started putting faces with names, learned more about DSN and the volunteer network, and was given quite a few hugs. There were some high tension moments where I was quite insecure, as some personalities make me want to retreat deep within myself. However, I watched as a couple of volunteers who were feeling unwell were doted on and taken care of, and you could feel the compassion and understanding in the room. As we were eating and then meeting about DSN, I looked around and was in awe that I was sitting in a room with people who were just like me.<br />
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That was amplified a hundredfold the next day, and I was incredibly unprepared for it. It started well, with my roommates and I getting along and having good conversations. They are totally awesome (and are adaptive dancers... EPIC!) I then helped put together the swag bags and get a few other things ready for the noon start. There was a lot of fun conversations as well as ones about our conditions which came across so naturally and casually. It was mind-blowing! Everyone knew and understood what everyone else was talking about! Come twelve, I went to make my way into the large conference room we were all gathering in, and my mind was blown. I'm a people watcher more than anything else and watched so many encounters between fellow dysautonomia, Ehlers-Danlos, gastroparesis, and Chiari patients. I was still pretty much clinging to Crystal, a volunteer I had been very eager to meet, but soon got to know so many others!<br />
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It was overwhelming. I was sitting there, listening to a speaker about physical therapy, and another about our swallowing issues, and others about so many topics which affect us... all of us... every single person in that room. I actually started tearing up over it. The room was freezing, so I used that as an excuse to step out and recompose. When another one of us became quite ill, you could feel it throughout the entire hotel. Every person in this community was worried. Every single one cared. I managed to make it through half of the presentations before needing to rest. My SI joint and I have been at odds for weeks now and sitting for too long was getting to be too much. I wanted to make sure I could go to our Patient Choice Awards and enjoy the night.<br />
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What an event that was! From our MC <a href="https://www.youtube.com/channel/UC1ubD9_yHqQA3GMsFHkRmQA" target="_blank">Josh Pray</a> making us laugh while wearing his big heart on his sleeve, to the presentation of awards, acceptance speeches, the absolutely breathtaking adaptive dance to "Elastic Heart," the collective concern as another one of us became really ill and more, it was amazing. I found myself getting emotional once more, mostly because I wanted so very badly to know everyone better and have that close connection I was witnessing over and over. Again, I wandered my way out to where I could stand against a wall and give my hip a break while still watching and listening and recomposing.<br />
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Ya... that didn't work so well. It was coming to the end of the awards show, and I knew something special was planned. I also knew many were hurting over the death of one of the volunteers and her picture was going to be in the final song. Let me tell you, there is no amount of emotional bracing which can prepare for a moment when a couple hundred people JUST LIKE YOU are standing, arm in arm, and swaying to <a href="https://www.youtube.com/watch?v=bwB9EMpW8eY" target="_blank">Rachel Platten's "Stand By You."</a><br />
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I was standing with them but also apart from them. Most of my table had left and the rest were with the others in a long line of swaying and singing DSN volunteers. That's when one of the sweetest people I have ever met in my entire life, and who I loved every moment I got to spend with, reached over from her wheelchair and gently took my hand as I stood there crying from the overwhelming scene in front of me. Community...<br />
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#DysautonomiaSupportNetwork, #DSN, #NeuroConnectSummit, #EDSwarrior, #DysDiva, #DazzleTogether</div>
ddraigswifehttp://www.blogger.com/profile/07952795229433613418noreply@blogger.com0tag:blogger.com,1999:blog-1941593586165218078.post-41618551238301530522019-05-15T22:14:00.001-04:002019-05-15T22:17:44.636-04:00On World Building and OWS CyCon - Author Interview<br />
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<span style="color: black; font-family: "arial" , sans-serif; font-size: 11.0pt;">As part of OWS CyCon, I've been given the chance to interview a fellow indie author. It was an exciting time! Here is the outcome of it. I hope you enjoy learning about her world.</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 11pt;">Find out More
About the World of <b>After the Green Withered</b> by Science Fiction Writer
Kristin Ward During OWS CyCon 2019</span><span style="font-family: "times new roman" , serif; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></div>
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<span style="color: black; font-family: "arial" , sans-serif; font-size: 11.0pt;">Welcome to another
fantastic stop in our World-building Showcase blog hop! On this stop, we’re
highlighting a story where the world changes or ends as we know it, but you can
find a full list of authors and topics on the </span><a href="https://owscycon.ourwriteside.com/world-building-showcase-blog-hop/"><span style="color: #1155cc; font-family: "arial" , sans-serif; font-size: 11.0pt;">OWS Cycon website</span></a><span style="color: black; font-family: "arial" , sans-serif; font-size: 11.0pt;">. Let’s dive in!</span><span style="font-family: "times new roman" , serif; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></div>
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<span style="color: black; font-family: "arial" , sans-serif; font-size: 11.0pt;">Welcome
Kristin Ward!</span><b><span style="font-family: "times new roman" , serif; font-size: 18.0pt;"><o:p></o:p></span></b></div>
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<li><span style="font-family: "arial" , sans-serif; font-size: 11pt;"><b><u>Before
we dive into the nitty-gritty, what is After the Green Withered about?</u></b></span></li>
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<b><i><span style="color: #454545; font-family: "arial" , sans-serif; font-size: 11.0pt;">They tell me the
country looked different back then.</span></i></b><span style="font-family: "times new roman" , serif; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></div>
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<b><i><span style="color: #454545; font-family: "arial" , sans-serif; font-size: 11.0pt;">They talk of open
borders and flowing rivers.</span></i></b><span style="font-family: "times new roman" , serif; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></div>
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<b><i><span style="color: #454545; font-family: "arial" , sans-serif; font-size: 11.0pt;">They say the world was
green.</span></i></b><span style="font-family: "times new roman" , serif; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></div>
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<b><i><span style="color: #454545; font-family: "arial" , sans-serif; font-size: 11.0pt;">But drought swept
across the globe and the United States of the past disappeared under a burning
sky. </span></i></b><span style="font-family: "times new roman" , serif; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></div>
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<span style="color: #454545; font-family: "arial" , sans-serif; font-size: 11.0pt;">Enora Byrnes lives in
the aftermath, a barren world where water has become the global currency. In a
life dominated by duty to family and community, Enora is offered a role within
an entity that controls everything from water credits to borders. But it
becomes clear that not all is as it seems. From the wasted confines of her
small town to the bowels of a hidden city, Enora will uncover buried secrets
that hide an unthinkable reality. </span><span style="font-family: "times new roman" , serif; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></div>
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<span style="color: #454545; font-family: "arial" , sans-serif; font-size: 11.0pt;">As truth reveals the
brutal face of what she has become, she must ask herself: how far will she go
to retain her humanity?</span><span style="font-family: "times new roman" , serif; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></div>
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<span style="color: black;"><span style="font-size: 14.6667px; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"><span style="font-family: "arial" , sans-serif;">*</span></span><span style="font: 7pt "Times New Roman";"> </span></span><!--[endif]--><span style="color: black; font-family: "arial" , sans-serif; font-size: 11.0pt;"><b>Does language play any
role in your world? Does everyone speak the same language, or is there variety?
Did you invent any new slang or terminology during your world-building process?</b><o:p></o:p></span></div>
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<span style="color: black; font-family: "arial" , sans-serif; font-size: 11.0pt;">My book takes place in
the United States of the future. Aside from story-related terminology, the
language of the book reflects our present dialogue.</span><span style="font-family: "times new roman" , serif; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></div>
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<span style="color: black;"><span style="font-size: 14.6667px; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"><span style="font-family: "arial" , sans-serif;">*</span></span><span style="font: 7pt "Times New Roman";"> </span></span><!--[endif]--><span style="color: black; font-family: "arial" , sans-serif; font-size: 11.0pt;"><b>What kinds of climates
do your characters experience? Do they see a lot of change or is it always the
same? Has your world always had this kind of climate, or has it changed over
time? </b><o:p></o:p></span></div>
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<span style="color: #222222; font-family: "arial" , sans-serif; font-size: 11.0pt;">My book is a dystopian
fiction based in a world ravaged by drought where water, the most valuable
resource on the planet, is the global currency. Following a prologue which
provides an essential backstory for the world I created, readers are introduced
to a young woman, Enora, who is on the cusp of graduating high school and
entering adulthood – this transition is tainted with frustration and worry over
where she will end up as options are limited. Everything in her society is
rigidly controlled – from water credits to borders – by an entity (the Drought
Mitigation Corporation or DMC) who took control of water resources early on in
the crisis and now have absolute control of every aspect of her community. When
she enters a role within this entity, Enora discovers startling secrets that
make her question who she is and what she stands for. </span><span style="font-family: "times new roman" , serif; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></div>
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<span style="color: black;"><span style="font-size: 14.6667px; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"><span style="font-family: "arial" , sans-serif;">*</span></span><span style="font: 7pt "Times New Roman";"> </span><span style="font-family: "times new roman"; font-size: 7pt; font-stretch: normal; font-style: normal; font-variant: normal; line-height: normal;"><b> </b></span></span><!--[endif]--><span style="color: black; font-family: "arial" , sans-serif; font-size: 11.0pt;"><b>Is there any kind of
faith system in your world? Did you draw inspiration from any real cultures,
living or dead?</b><o:p></o:p></span></div>
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<span style="color: black; font-family: "arial" , sans-serif; font-size: 11.0pt;">I was inspired to write <b><i>After
the Green Withered</i></b><i> </i>and the sequel, <b><i>Burden of Truth</i></b>,
while completing research for a graduate course I wrote in environmental
education. My course included concepts regarding earth’s history and, within
this, I learned a great deal about the impact humans have had on the planet. As
I studied and composed the course, an idea began to germinate. </span><span style="font-family: "times new roman" , serif; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></div>
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<span style="color: black; font-family: "arial" , sans-serif; font-size: 11.0pt;">What if there was a
global drought due to the impact humans have had on the planet? What if
water became the global currency?</span><span style="font-family: "times new roman" , serif; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></div>
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<span style="color: black; font-family: "arial" , sans-serif; font-size: 11.0pt;">That seedling idea sat
with me for a year or so as I finished my course writing and began to teach a
few graduate courses. Eventually, I began to write the story but it took a
whopping five years to get it from draft to publish! The final push actually
came about after I read an article about Cape Town’s water crisis. At the time
of the article, it was predicted that Cape Town’s water supply would run dry in
April of 2018, not tens of years in the future. Reading this, I knew the story
I wanted to tell was incredibly relevant so I buckled down and finished the
first book.</span><span style="font-family: "times new roman" , serif; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></div>
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<span style="color: black;"><span style="font-size: 14.6667px; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"><span style="font-family: "arial" , sans-serif;">*</span></span><span style="font: 7pt "Times New Roman";"> </span></span><!--[endif]--><span style="color: black; font-family: "arial" , sans-serif; font-size: 11.0pt;"><b>What do people in your
world do for fun? Are there sports, games, music, or other activities they do
in their free time?</b><o:p></o:p></span></div>
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<span style="color: black; font-family: "arial" , sans-serif; font-size: 11.0pt;">The world of my main
character is rigidly controlled. It is a world of scarcity and deprivation.
People in this society don’t have much opportunity for frivolity which is why
this element isn’t present in my books.</span><span style="font-family: "times new roman" , serif; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></div>
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<span style="color: black;"><span style="font-size: 14.6667px; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"><span style="font-family: "arial" , sans-serif;">*</span></span><span style="font: 7pt "Times New Roman";"> </span></span><!--[endif]--><span style="color: black; font-family: "arial" , sans-serif; font-size: 11.0pt;"><b>What kinds of
transportation and other interesting technology do your characters have access
to? Are they ahead, behind, or a mix of different kinds of tech compared to
where we are now?</b><o:p></o:p></span></div>
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<span style="color: black; font-family: "arial" , sans-serif; font-size: 11.0pt;">The vehicles in my book
are electric or solar-powered. This is due to the environmental catastrophes
that impacted the world of my main character, changing the US from a country of
50 states to 18 states based on river basins. These events were the result of climate
change that was exacerbated by the increase in the burning of fossil fuels.</span><span style="font-family: "times new roman" , serif; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></div>
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<span style="color: black;"><span style="font-size: 14.6667px; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"><span style="font-family: "arial" , sans-serif;">*</span></span><span style="font: 7pt "Times New Roman";"> </span><span style="font-family: "times new roman"; font-size: 7pt; font-stretch: normal; font-style: normal; font-variant: normal; line-height: normal;"><b> </b></span></span><!--[endif]--><span style="color: black; font-family: "arial" , sans-serif; font-size: 11.0pt;"><b>Without giving away too
much, what can you tell us about your world-ending event and how it led to the
world of your story? Was it a distant event or does it happen as part of your
tale?</b><o:p></o:p></span></div>
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<span style="color: #222222; font-family: "arial" , sans-serif; font-size: 11.0pt;">Numerous readers have
told me that the book is a truly frightening vision because they could see it
coming to fruition in real life. It is a wake-up call. An important idea is
that the choices we make, environmentally, have consequences. We may not see them
in our lifetime, but what we do can and will affect the future. In the end, if
the people in Enora’s world had made different choices long before she was
born, then her life and the events that shape the story, would have been a much
different tale to tell.</span><span style="font-family: "times new roman" , serif; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></div>
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<span style="color: black;"><span style="font-size: 14.6667px; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"><span style="font-family: "arial" , sans-serif;">*</span></span><span style="font: 7pt "Times New Roman";"> </span><span style="font-family: "times new roman"; font-size: 7pt; font-stretch: normal; font-style: normal; font-variant: normal; line-height: normal;"><b> </b></span></span><!--[endif]--><span style="color: black; font-family: "arial" , sans-serif; font-size: 11.0pt;"><b>When you build a world,
what is your process like? Do you do a lot of research upfront, wing it
completely, or something in between?</b><o:p></o:p></span></div>
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<span style="color: black; font-family: "arial" , sans-serif; font-size: 11.0pt;">I conduct an enormous
amount of research before and during the writing process. It is important for
the story to have elements of realism. This helps to ground the reader in the
events of the book because the fictional world reflects the one the reader
experiences every day. </span><span style="font-family: "times new roman" , serif; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></div>
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<span style="color: black;"><span style="font-size: 14.6667px; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"><span style="font-family: "arial" , sans-serif;">*</span></span><span style="font: 7pt "Times New Roman";"> </span><span style="font-family: "times new roman"; font-size: 7pt; font-stretch: normal; font-style: normal; font-variant: normal; line-height: normal;"><b> </b></span></span><!--[endif]--><span style="color: black; font-family: "arial" , sans-serif; font-size: 11.0pt;"><b>How central is the
setting of your story to the story itself? Is it more of an interesting
backdrop, or is it integral to the events of the story?</b><o:p></o:p></span></div>
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<span style="color: black; font-family: "arial" , sans-serif; font-size: 11.0pt;">The setting is an
integral part of the story. It is our world after years of unregulated fossil
fuel use and indifference to the effects of climate change. This world is one
that has been altered so much by man that is had become unrecognizable. </span><span style="font-family: "times new roman" , serif; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></div>
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<span style="color: black;"><span style="font-size: 14.6667px; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"><span style="font-family: "arial" , sans-serif;">*</span></span><span style="font: 7pt "Times New Roman";"> </span><span style="font-family: "times new roman"; font-size: 7pt; font-stretch: normal; font-style: normal; font-variant: normal; line-height: normal;"><b> </b></span></span><!--[endif]--><span style="color: black; font-family: "arial" , sans-serif; font-size: 11.0pt;"><b>When helping the reader
get to know the world you built, what techniques do you use? Do you tend to be
upfront about things, or keep the reader in the dark and feed them only bits at
a time? </b><o:p></o:p></span></div>
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<span style="color: black; font-family: "arial" , sans-serif; font-size: 11.0pt;">I wrote a very detailed
prologue that is essential to the story. Before delving into the society of my
main character, the reader must fully understand the world that she inherited.
This shapes her perception of the controlling power and is a foundational part
of the storytelling.</span><span style="font-family: "times new roman" , serif; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></div>
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<span style="color: black;"><span style="font-size: 14.6667px; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"><span style="font-family: "arial" , sans-serif;">*</span></span><span style="font: 7pt "Times New Roman";"> </span><span style="font-family: "times new roman"; font-size: 7pt; font-stretch: normal; font-style: normal; font-variant: normal; line-height: normal;"><b> </b></span></span><!--[endif]--><span style="color: black; font-family: "arial" , sans-serif; font-size: 11.0pt;"><b>How much of a role does
realism and hard scientific fact play in your world-building? Do you strive for
100% accuracy, or do you leave room for the fantastical and unexplainable in
your world?</b><o:p></o:p></span></div>
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<span style="color: black; font-family: "arial" , sans-serif; font-size: 11.0pt;">Realism is very
important to the story but not to the degree that I strive for 100% accuracy.
The research I conducted over the span of both books laid the foundation for
the realistic aspects of the world itself and many elements within it. I have
worked to explain various ideas in both books because they are interconnected
with the world itself. </span><span style="font-family: "times new roman" , serif; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></div>
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<span style="color: black;"><span style="font-size: 14.6667px; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"><span style="font-family: "arial" , sans-serif;">*</span></span><span style="font: 7pt "Times New Roman";"> </span></span><!--[endif]--><span style="color: black; font-family: "arial" , sans-serif; font-size: 11.0pt;"><b>Do you have any
specialized training or background from your “real life” that has informed your
world-building? </b><o:p></o:p></span></div>
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<span style="color: black; font-family: "arial" , sans-serif; font-size: 11.0pt;">The idea for my debut
novel derived from a graduate course I wrote in environmental education. I was
conducting research as I crafted the course components and the premise of this
story was born from that experience. </span><span style="font-family: "times new roman" , serif; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></div>
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<span style="color: black;"><span style="font-size: 14.6667px; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"><span style="font-family: "arial" , sans-serif;">*</span></span><span style="font: 7pt "Times New Roman";"> </span></span><!--[endif]--><span style="color: black; font-family: "arial" , sans-serif; font-size: 11.0pt;"><b>How do you keep all of
the details of your world and characters straight? Do you have a system for
deciding on different factors and keeping it all organized, or does it live
more in your head?</b><o:p></o:p></span></div>
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<span style="color: black; font-family: "arial" , sans-serif; font-size: 11.0pt;">I should probably have a
structure in place to keep track of the details in my work, but I rely on my
memory. Let’s hope I don’t start experiencing early memory loss!</span><span style="font-family: "times new roman" , serif; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></div>
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<span style="color: black;"><span style="font-size: 14.6667px; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"><span style="font-family: "arial" , sans-serif;">*</span></span><span style="font: 7pt "Times New Roman";"> </span></span><!--[endif]--><span style="color: black; font-family: "arial" , sans-serif; font-size: 11.0pt;"><b>Did you experience any
difficulties while building your world? Any facts that refused to cooperate or
inconsistencies you needed to address while editing?</b><o:p></o:p></span></div>
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<span style="color: black; font-family: "arial" , sans-serif; font-size: 11.0pt;">I am in the unique
position of having the premise for my book develop from research I was already
conducting. From this point, I compiled a list of ideas I wanted to further
explore and potentially add to the story. Being a total nerd, I enjoy the
process of digging into science to better understand the concepts I am writing
about in both books.</span><span style="font-family: "times new roman" , serif; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></div>
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<span style="color: #434343; font-family: "arial" , sans-serif; font-size: 11.0pt;"><b>Where can people find you on the web?</b></span><b><span style="font-family: "times new roman" , serif; font-size: 13.5pt;"><o:p></o:p></span></b></div>
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<span style="color: black; font-family: "arial" , sans-serif; font-size: 11.0pt;"> Please visit my OWS CyCon Author Booth at:</span><span style="font-family: "times new roman" , serif; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></div>
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<o:p> </o:p>For more stops on our End of the World
World-building Showcase, <a href="https://owscycon.ourwriteside.com/world-building-showcase-blog-hop/"><span style="color: #1155cc;">visit the tour page on the OWS CyCon website. </span></a>You
can also find more great Sci Fi authors and books on our <a href="https://owscycon.ourwriteside.com/science-fiction-events-at-ows-cycon/"><span style="color: #1155cc;">main Sci Fi event page. </span></a></div>
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<span lang="EN"> #OWSCyCon, #Sci-Fi, #SciFi, #ScienceFiction, #world-building, #worldbuilding<o:p></o:p></span></div>
<br />ddraigswifehttp://www.blogger.com/profile/07952795229433613418noreply@blogger.com0tag:blogger.com,1999:blog-1941593586165218078.post-12948536513353077662019-04-28T14:48:00.004-04:002023-10-04T23:04:41.485-04:00On My Top 5 Favorite Science Fiction Books This year, I am participating in OWS CyCon, a completely online and free book convention. I've been having a lot of fun designing my digital "booth," participating in blog-hops, setting up for cover wars, and interacting with the other authors. Many of them are indie-publishing like me!<br />
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One of the questions which I've been frequently asked over the years is: "What are your favorite books?" I have far too many to ever be able to answer without a long hesitation as my brain goes through the list, and I stumble through picking five at random. So, I thought I'd narrow it down to "What are Holly's top 5 favorite Science-Fiction books?" However, even that needed a "twist" to make it work... My indoctrination into the wide world of Sci-Fi came in the form of three Hammermill paper boxes, full of books ranging from War of the Worlds to dozens of Star Trek and Star Wars books. A family friend learned of my blossoming interest and had handed me his entire collection! Nearly thirty years later, I still own most of them and all have had some kind of influence. However, here's the closest thing I'll get to a Top 5<br />
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<b>Number 5 </b>This is a book no longer in print, but it was my introduction to "Sci-fi other than Star Trek and Star Wars" and has stood the test of time for me. "100 Great Science Fiction Stort Stories" is one I've kept hold of from those original boxes handed to me. I've honestly lost track of how many times I've read it!<br />
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<b>Number 4</b> I fought over this one, as there really are three which qualified, based on how much I enjoyed reading them and how it ended up affecting me as a writer. However, I'm going with the middle book of an unofficial trilogy. Many know of Lois Lowry's book "The Giver," but did you know it had two sequels? <a href="https://www.amazon.com/Gathering-Blue-Giver-Quartet-Book-ebook/dp/B003JFJHRK/ref=sr_1_1?keywords=Gathering+Blue&qid=1556476587&s=gateway&sr=8-1" target="_blank">"Gathering Blue" i</a>s my number four, as I can clearly see its influences in some of my writing. The third in that series was called "The Messenger" for anyone interested in the rest of the story. She ties in characters from both books, making it quite clear it is a trilogy after all!<br />
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<b>Number 3</b> Though it wasn't on the top five until recently, George Orwell's 1984 has secured its place. After hearing numerous mentions of it over the past few years, I re-read it - not having picked it up for around twenty years. Oh, the difference time and maturity makes on the mind!<br />
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<b>Number 2: </b>And now for the twist! My number two choice would be... almost all of the original expanded universe Star Wars books starting with "Splinter of the Minds Eye" and up to "Showdown at Centerpoint" when you line the books up chronologically from when they happened in the universe. Geeky, I know. I'm not sorry, though.<br />
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<b>Number 1:</b> I'm a Trekkie and proud of it! Not only am I a Trekkie, but I'm absolutely fascinated by a minor character named Saavik... to the point where I've based one of my characters in Star Trek Online off of her- making Saavik T'kayeda's mentor. It's no surprise then that <a href="https://www.amazon.com/Pandora-Principle-Star-Trek-Original-ebook/dp/B000FC0SLY/ref=sr_1_1?crid=2ZET8GSNHJ0PR&keywords=the+pandora+principle&qid=1556473504&s=gateway&sprefix=Pandora%27s+Principle%2Caps%2C131&sr=8-1" target="_blank">"The Pandora Principle"</a> by Carolyn Clowes is my number one favorite book. She took the few little glimpses we had of Saavik and weaved and entire history out of the mystery. It is fabulous!<br />
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<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre;">*OWS CyCon officially runs May 17-19 with the </span><a href="https://owscycon.ourwriteside.com/about-ows-cycon/" style="text-decoration: none;"><span style="background-color: transparent; color: #1155cc; font-family: "arial"; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: underline; vertical-align: baseline; white-space: pre;">CyCon website</span></a><span style="background-color: transparent; color: black; font-family: "arial"; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre;"> and </span><a href="https://www.facebook.com/events/574802543016528/" style="text-decoration: none;"><span style="background-color: transparent; color: #1155cc; font-family: "arial"; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: underline; vertical-align: baseline; white-space: pre;">Facebook events</span></a><span style="background-color: transparent; color: black; font-family: "arial"; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre;"> acting as the hub for all of our events. </span><span style="background-color: transparent; color: black; font-family: "arial"; font-size: 11pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre;"> </span></div>
ddraigswifehttp://www.blogger.com/profile/07952795229433613418noreply@blogger.com0tag:blogger.com,1999:blog-1941593586165218078.post-85723682173662255632019-04-11T02:26:00.002-04:002019-04-28T00:19:41.155-04:00On How Ehlers-Danlos Has Affected Me It has been nearly six years since I last focused a blog post on having Ehlers-Danlos Syndrome. So much has happened since then! So, I thought it was time to reflect on the day-to-day with this genetic disorder. How has EDS affected me?<br />
My mornings are full of false starts, though I move from the bed and my C-PAP to the couch when my husband goes to work. There is the morning "what's dislocated" moment and getting my first dose of medications in, as well as a liquid breakfast. Gastroparesis is not kind to solid foods in the morning. If I'm in physical therapy, at the gym for time in the water, at the clinic for infusions via my chest port, or have doctors appointments, those all happen in the mornings. When I'm lucky enough to not have those, I sleep in.<br />
I'm blessed to be able to work from home with a wonderful <a href="https://www.homeschoolacademy.com/" target="_blank">accredited homeschool academy</a>. Losing my ability to teach full-time was a very hard blow, but I could not keep up and was dislocating joints in the classroom at random times or in the halls due to a rushing teenager. However, I now get to work with students and their families from my home office. I use adaptive equipment like a vertical mouse, voice to text software, a brace to hold me up better, and athletic tape or <a href="https://www.zebrasplints.org/" target="_blank">ring splints</a> on my fingers. On bad days, I work from the couch. I'm exhausted by the end of those hours, though, so end up needing a long nap in the late afternoon.<br />
Most of the daily tasks happen right after that nap. I'll work on home physical therapy, will try to get a house-task done, or will be outside in my adaptive garden or greenhouse. Regardless, I'm braced up, taped up, and with an electrolyte drink in my hand and phone in my pocket in case I fall. I try to make large batch meals so there are nights where we have leftovers, as it is exhausting to cook. After that, I'm back on the couch, working on my novels or gaming and roleplaying with my friends. On really good nights, I can get some sewing in as well. Sleep does not come easy, due to "painsomnia" and side effects from the medications keeping me alive. I'm up late... even when I want to be asleep.<br />
There is so much I miss, like being able to go hiking whenever I want, or the freedom to run errands without having to build in ample crash time afterward. I hate the looks I get parking in handicap and have been verbally accosted even when I had a cane and knee braces and ankle braces on. I miss dairy and nightshades and being able to cook whatever I wanted. I hate being on so many medications, though do what I can with natural methods too. I own so many braces, splints, rolls of therapy tape, and compression garments that I could open my own supply store. I miss being able to look at my future and actually seeing it. So many of us die way too early. I miss the income of working full-time. It has made things tougher for us for sure. There is so much our house needs or what we want for it that we just cannot handle now.<br />
However, there have been some positives too. Without the people I've met in this journey, I wouldn't be in the position I am today - volunteering for <a href="https://www.dysautonomiasupport.org/" target="_blank">Dysautonomia Support Network</a> in their largest Facebook support group. I've made some amazing friends through this battle. I wouldn't have been able to teach so many about rare genetic disorders (my husband has <a href="https://www.npkua.org/What-is-PKU/About-PKU" target="_blank">PKU,</a> so I get to double up on the education giving!) There are people I've been able to influence positively because of what I've gone through. I also wouldn't have gotten back into sewing, wouldn't have been sewing commission work, and wouldn't have met the Piecemakers, the charity quilting group I volunteer at on Saturday mornings. They keep me going, though I'm on the couch for hours afterward. I also wouldn't have had the time and focus to write novels. <a href="http://amazon.com/author/h.glogau-morgan" target="_blank">Two are already out </a>with a third coming in June and another by the end of the year.<br />
Ehlers-Danlos Syndrome is a beast. It is a heavy burden to bear which affects every part of my life. However, it has made me who I am today.<br />
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#EDSwarrior #Zebra #DSN #bodydrama #divajuiceddraigswifehttp://www.blogger.com/profile/07952795229433613418noreply@blogger.com1tag:blogger.com,1999:blog-1941593586165218078.post-87577844364929893092019-02-25T02:19:00.000-05:002019-02-25T02:19:01.146-05:00On the Warnings in a DreamHer name is Sarai, and for the past three weeks, she and I have been spending a lot of time together. It's not that we necessarily want to, at least I didn't. I've been happily focused on writing my third novel, getting back on track after a month break to heal tennis elbow and a dislocated thumb. However, just as I started writing again, she showed up... big... the same way that Harlie showed up eight years ago. The dreams were stunningly vivid, her story amazingly complex yet incredibly simple. Her life played out in front of me every night for nearly three weeks.<br />
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There were a few things in her world which stood out.<br />
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First, for those who have read "Midnight to Morning," she's from the time James and Rick warn about.<br />
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Second, she had a very clear warning for what our future could hold if we keep on our current path. Honestly, I can see it happening... easily. Her story picks up just a hundred years from now. What I saw was this:<br />
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Earth went past its tipping point during a series of global wars. It was already teetering on the edge and showing it through wild weather, increased pests and illnesses and such. Now, it is actively eliminating the cause. There are plagues which wipe out tens of millions, natural disasters of epic proportions are almost commonplace, infrastructure has been devastated, and farms long poisoned in the name of prosperity are no longer able to support even the reduced number of people.<br />
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Christianity is practically lost, and it is their own fault that it happened. First was the breaking into two distinct factions, the "Radicals" with their hatred and twisting of the scriptures to defend it and the crooked politicians who supposedly were God-fearing, and then those who tried to live the way Christ taught, the actual "Christians.". One was not strong enough or outspoken enough to overpower the other. People saw the bad and more turned to atheism and other religions and started actively attacking all Christians, regardless of if they were out helping the poor, loving everyone, supporting everyone because we all are sinners after all. All are lost without God. Laws started to turn against them. Churches fell after losing legal support. What was left went underground, their decades of whining that they were being persecuted actually turning into true persecution. Those who had been doing good in the world continued trying while remaining hidden. Sarai's parents are two of them.<br />
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Society as we know it has broken down due to major political changes and those wars. It is now broken up into four segments: The Wilds- lawless remnants of towns and cities. The Camps - where the poorest are trying to scrape out a living in slums. Some basic needs are provided for somewhat but not enough. Resources are too tight. The Compounds - a lower to middle class structured area where everyone has access to housing, simple meals, and clothing basics and receive a stipend based off of their job and how well they do. The goal is to save or do well enough to get into better housing or better jobs with better stipends. Then there are the Barons - the few upper class who have taken over vast swaths of land, be it decimated cities and towns or farmland. Most set their domain up with a center of large houses and fancy properties and surround it with the Compounds, which they run and profit off of, and finally the Camps. There were many more details, but those will be in the book.<br />
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It was all incredibly vivid, and I can tell where my mind was taking current events and playing them on fast forward to a possible outcome. It wasn't that way with Harlie's story. These clearly rang of warnings to the point I've felt this blog needed to be written about what I saw versus waiting until this book was written and published. That will happen after I wrap up the Midnight to Morning trilogy this Spring. I'm not sure what anyone else will think of it... but there it is, Sarai's warnings.ddraigswifehttp://www.blogger.com/profile/07952795229433613418noreply@blogger.com0tag:blogger.com,1999:blog-1941593586165218078.post-49703475364369799622019-01-19T02:07:00.001-05:002019-01-19T02:07:43.399-05:00On Desperation and CompassionThis post could go so many different ways, but I'm going to try to stick with a single focus.<br />
Today, I spent most of my work hours focusing on the high school's yearly "Act for Compassion" event through Compassion International. Each year, we focus on a different area where the organization is helping. We've covered at-risk-for-trafficking kids in Brazil, the Medical Intervention fund, and the Water for Life initiative. It is a way for students and their families to learn about families in developing countries, families who are similar to them and who have the same wants, needs, and dreams. While writing out the weekly emails, I found myself trying harder than ever to get across how similar we all are, but how the dark hole of poverty can crush those in developing countries, and how we can help.<br />
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But I was also thinking about the current swords being swung, and how twisted the conversation around those living in these countries has become. I found myself, ashamedly, picking stories from African and Asian countries so I wouldn't be attacked over Central American ones. Yes, I've been attacked, repeatedly, and it has left a mark.<br />
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For what? Why?<br />
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I've been with Compassion International for over 21 years now. In that time, one of the main things I've learned is the families in these developing countries are lacking one big thing. Options. They are born into poverty. Born into limited food options. Born into limited or no access to clean water. Born into countries with crushed or corrupted economies, many of which the developed countries have caused. They are born to where there are precious few job opportunities. Born into where there are high crime rates because of the levels of desperation. Born to where getting a proper education is difficult or almost impossible. They are born into hopelessness, and there are very few ways out.<br />
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Charity organizations come in, and they try their hardest to make positive impacts. Some focus on infrastructure, like wells and streets. Some focus on building better housing. Some focus on just providing meals and vaccines. And some, like Compassion, focus on eliminating poverty starting from the child up... their food, books, uniforms, and supplies all purchased locally, to build the economy. Their tutors, those cooking their food, those sewing the uniforms, those teaching skills, all coming from the community, providing wages. The areas around the Compassion centers are growing and developing as the children do. Right now over 2 million children are in the program... but there are so many more!<br />
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I was attacked for pointing out that hopelessness, that desperation. For pointing out that you cannot just aid an organization or go on a missions trip to these places, making yourself feel good, and thinking it is enough for all. For one minute saying you love these hurting people, and then the next minute cursing their existence because they are trying to break free and get help. For speaking up when an acquaintance went to another country to build a church, and then came home and screamed about how dare those people, from the same country he just left, try to come to our border and beg for help. I'm not talking about border jumpers or those who overstay visas, I'm talking about the abused woman and her children who are escaping the cycle. I'm talking about the young men trying to get away from the gangs and drugs and find a better life. I'm talking about the mothers who know their children would likely die or never break free of poverty if they stayed where there are no jobs, schooling is too costly, crime rules the street, sex trafficking is out of control, food and water is scarce and more. These are the "least of these." These are the people Christ repeatedly asked us to help. Oh, but what about those in poverty here? Help them too! The ones making the most noise seem to be the ones who are not lifting a finger to help either group, or who think donating some ripped up leftovers is the best answer.<br />
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I had a member of my family who was rumored to have crossed the ocean as a stowaway to escape the rising communism in his native country. He was desperate to break free before it was too late. I've taught children who have told me the horrors their families faced before coming to the border and asking for asylum, asking to be saved. I had a student who was kidnapped by a gang and his father raced him up to the border the moment he paid to get him back, begging to be let in, too scared for his son to stay where he was. I've talked with their families, in between the multiple jobs they work, because they want their children to have what they never could. I've helped out when that transition has been hard, dropping off needed items, or just being there to listen as they relay the hopelessness of the past. I've also watched them thrive! A car bought, a house rented, a child graduating high school and then college, a parent moving up from menial labor to management because of hard work and determination... building up our communities here, building up our country!<br />
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We are called to love one another as Christ has loved us. We are called to love the least of these. We are called to help the orphan and the widow... the ones who would never be able to gather the thousands upon thousands of dollars to pay lawyers and bribe officers and clerks so they could "come in the right way." They are still coming in through the legal way, through the border crossing stations. Why are we not following the clear and simple commands Christ gave us? Why are we showing up to church on Sunday and twisting the Bible to be hateful on Monday? Why are supposed Christians attacking Christians for following what Christ said?<br />
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I felt anxiety when writing emails about charity today... purposely picking out countries outside of Central America to help teach others...<br />
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Because of the reactions of people who are supposedly followers of Christ...<br />
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Think about that.ddraigswifehttp://www.blogger.com/profile/07952795229433613418noreply@blogger.com1tag:blogger.com,1999:blog-1941593586165218078.post-87175318681812214042018-12-04T02:09:00.001-05:002018-12-15T16:35:53.833-05:00On 2018: Christmas LetterAs shown by some of the blog posts over this year, it has been quite a change from the past. This year was a very eventful one!<br />
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This year has seen our driveway repaired, our garden getting a bit out of control, a vacation to Alabama and Tennessee in the middle of summer, Owen's parents starting their move to Wisconsin (to be near their granddaughters,) us paying off a large chunk of debt and more. We are going to need to get some outside help with the landscaping and garden repairs, though. I cannot keep up with it all. We traveled to Alabama and Tennessee for vacation, spent time with Owen's aunt and uncle as they visited from Wales, and had some other day-trip adventures. There were two losses, in that our precious Hobo-dog went over Rainbow Bridge (see post below this one) and Fledgling (tiel) followed shortly. I still miss Hobo every day and find myself looking for him in his "den," our closet, every time I go in there. Luke and Ginger are doing great and are loving that we have a fenced in back yard now. Erwin-bird (aka "little twiddle") is going strong at age 17! He's such a funny little guy.<br />
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Owen has been doing good at his job as the town governments' Sys Admin. He's now more into the HAM radio world than ever. Just last month we got to listen to the astronauts on the International Space Station through one of his radios! He's also been getting into tracking airplanes with it and is part of an emergency "net" system for weather or other disasters. It's great to see him enjoying his hobby. Also, by the time some of you read this, Owen will have had his first dose of the new drug for PKU - Palynziq (PegPal.) It's, in short, a bacteria genetically modified to eat phenylalanine, the amino acid Owen's body cannot process. It is going to be a long process of getting up to the full dose, as it works similar to allergy shots. However, once he is up to maintenance, my husband will be able to eat an almost normal diet! He will be able to eat chicken, beef, fish, higher protein grains and other foods and will finally be off the nasty metabolic formula which kills is appetite. He's down 10 pounds now, so all of his doctors are eager to move this process forward. The drug was only approved back in Sept, so he gets to be a trailblazer again.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjsQIfIJBskQP5KV_h2Ao9o8xza7yuh1ZFcTwlHutGLM_3nSxp7xOzrh3bXc9GQB3EosKOoVCOM8R_I0SVU1gGMBlMWSB3QXje9gt5TLPs1hpsXY5RxKOacuGJBLMT88jGbwPerE2U3R2nx/s1600/E-book+Sunrise+to+Shadows+cover.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjsQIfIJBskQP5KV_h2Ao9o8xza7yuh1ZFcTwlHutGLM_3nSxp7xOzrh3bXc9GQB3EosKOoVCOM8R_I0SVU1gGMBlMWSB3QXje9gt5TLPs1hpsXY5RxKOacuGJBLMT88jGbwPerE2U3R2nx/s200/E-book+Sunrise+to+Shadows+cover.jpg" width="150" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPXxSSX9CiowL1VlL1oUIUBMeSlHfCGH-0xt7KJNkIYaUZGS10Qh9rCqzyUh_CDWE8Zl9bA86ZA6t2m65j1FNgeBMQQRWSRw7p_axekFGmvETT1DRwNa_U3WAKBsSoaI7wJSY9uEtrAiMK/s1600/Midnight_to_Morning_-_E_Cover.png" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="853" data-original-width="649" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPXxSSX9CiowL1VlL1oUIUBMeSlHfCGH-0xt7KJNkIYaUZGS10Qh9rCqzyUh_CDWE8Zl9bA86ZA6t2m65j1FNgeBMQQRWSRw7p_axekFGmvETT1DRwNa_U3WAKBsSoaI7wJSY9uEtrAiMK/s200/Midnight_to_Morning_-_E_Cover.png" width="151" /></a>Last December, my second novel "Sunrise to Shadows" was released. Two weeks later, I was being asked to write an article on adaptive writing for a major Indie author magazine "Indie Authors Monthly." I was briefly part of a peer review group on Goodreads, but could not keep up with the demands, due to other things going on. I'll return to it soon. Both novels have had another revision (final one for Midnight to Morning) and both have brand new covers, which I absolutely love! They've had a decent year with book shows, author interviews and a few "take over" days on various Indie author pages. I still need more reviews though! If you've read either one, PLEASE review it on Goodreads and Amazon. To take the series to the next step, I need those reviews. Novel 3, the final in the series, is over halfway written and still on-target for a late Spring release. It continues to refuse to be named...<br />
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The health struggles continue between Ehlers-Danlos and Dysautonomia. I spent nearly all of Spring and Summer pretty much housebound because the heart condition side was so out of control. My old cardiologist was very old-school about it and refused to work with the last 15 years of research, so a change was made. I had originally been told it would be March of 2019 before I could get in with the specialists at VCU who knew dysautonomia, but God blessed me with getting in on a cancellation 2 weeks after I called. I was then referred to one of the top 5 specialists in the US for my condition. Though it means getting a chest port for regular fluids, I've been making great progress after adding just a single medication. My heart went from running over 100 beats per minute all day every day to the normal range of 70's and 80's! There's been some newly dislocating joints, a summer in physical therapy, a new pain management clinic (which I love... those guys are great!) and the usual progression of the disorder. Every time I get more active by going to the gym or walking more, I end up injured...However, I'm still fighting it with all I've got!<br />
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That's about it for now. With getting back into blogging more, and with social media, anything key I missed is bound to be online somewhere!ddraigswifehttp://www.blogger.com/profile/07952795229433613418noreply@blogger.com0tag:blogger.com,1999:blog-1941593586165218078.post-87242853545659450632018-09-30T12:54:00.002-04:002018-09-30T13:09:28.079-04:00On the Life of a HoboNote: I'm not really sure this blog is ready to be written and published, but I'm going to give it a try.<br />
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In May of 2009, Owen and I purchased our first home. After moving thirteen times in ten years, I was very ready to stop wandering. We had been searching for a couple of months when a rural rancher became available. Driving up the damaged two-acre long driveway was an adventure, but the little house, sitting in a one-acre clearing, surrounded by a protective barrier of trees was perfect for us. It was a foreclosure, and it needed some work, but the price was perfect. Unbeknownst to us, until after we had bought and moved into it, the house also came with a dog. The neighbors had been feeding him, along with their outdoor dog for "a few years or so." and called him Hobo.<br />
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When we first met Hobo, he was very skittish, with matted fur everywhere. We had Aspen at the time, and Hobo even seemed afraid of him! As we settled into the house, we noticed that Hobo would hide under our porch during storms and roam between the properties during the day. Attempts to get close to him seemed fruitless. Honestly, it was kind of annoying as I thought we'd just be "putting up with" this stray- a feeling I've come to regret.<br />
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Then the breakthrough happened. It was late October, and I was in the front yard, placing multiple layers of newspaper down where our future garden would be. Hobo had been pacing around me, then suddenly came and sat in my blind spot. I went totally still and calm, then slowly reached behind me, without looking, and pet him. He not only tolerated it, but he also leaned into it a little. Over the next month, petting him behind me turned into petting him next to me, then in front of me with both hands. We started talking about bringing him into the house, as winter was coming... even though the neighbors insisted all he did was pee everywhere and tear things up. We put our old moving blankets onto the porch, along with a water and food dish, and waited to see what happened. Bit by bit, Hobo started sleeping there. We tried to get him into the house, but he was still too scared.<br />
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Then, in late January 2010, Hobo got into a fight. I was leaving for work when it happened and got it broken up. It was an abandoned hunting dog that did it. Reaching over to comfort Hobo, my hand came back bloody. His ear had been torn up. Risking being late, I ran inside for water and a towel and got it cleaned up. Hobo was waiting for me on the porch when I got home, a first. That night, we put him into the basement, so he could stay warm while healing, and told the neighbors. "Oh, just give him an aspirin." No. Owen and I decided that enough was enough and started luring him inside in the evenings. By the time the neighbors came over, in Feb, to say they were moving and to take Hobo or they drop him in the shelter, we already had him coming inside willingly and even allowing us to cut his matted fur!<br />
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February 14th, 2010 is the day we permanently moved him inside. He was housebroken by February 17th and had claimed the recliner in our computer room as his own by February 20th. He and Aspen got along well. Hobo did have one quirk, though, he insisted on sleeping in our bedroom closet. It was a cave for him, just like under our porch. The first two years were spent learning to help him overcome his fears while trying not to gag when he brought presents home for us - opossums, dear carcasses, bones etc. We managed to get him to accept being on our dog-run, something which had to happen because he'd take off down the driveway to go mark the mailboxes and roam "his" territory, and I was terrified he'd get hit by a car even with all of his experience living outdoors.<br />
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Hobo ended up teaching me so much about love and trust. From that first moment in Oct 2009, to how he handled moving into the house, to first vet visits (where he was diagnosed with 6 tick born illnesses and had to trust us when giving him months of meds) to learning to walk on a leash, to working through the phobias from storms. He'd come into the bathroom every time I was there and would stand in front of me to have his snout, itchy eyes and ears rubbed. It was "our time" together. While he often went to his closet to rest, he also loved being in the living or computer room with us. When I'd go into the hobby room to sew, he was my companion. I even made him a little bed for when he was back there with me. I soon realized that I had never loved an animal the way I loved Hobo.<br />
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When we first brought him to the vet and told him what the neighbors had told us; he agreed that Hobo seemed around 6-7 years old. Though he had excellent care with us, those first years left their mark. He soon developed arthritis from the Lymes, and his back legs were "numb" by the time he was ten. Hobo didn't let it slow him down much. He made it through a bout with a plasma-cell tumor on his paw pad with barely a wince. With some coaxing, he'd get up on the couch for every bandage change. It was him suddenly starting to hop onto the couch on his own which raised the first red flag for me after that. Ever since we had gotten rid of the recliner, it was rare to see Hobo on furniture, but here he was, next to me almost every day. I told him, "I know, Hobes, we're almost out of time, aren't we?" He then started to lose bowel control and his hips got much worse. We took him to the vet for tests and pain meds, knowing we probably didn't have much time left.<br />
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We didn't even have a week...<br />
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On Saturday, September 22nd, 2018, I was resting from a book show when Owen let the dogs out. Five minutes later, he screamed that Hobo might be dead. We ran over to where he was laying in the yard. His eyes were open and alert, but the rest of his body wasn't moving at all. We pet him, checked for damage, tried to get him up, but it was no use. Crying, I called the emergency vet to say we were on the way and that it looked like goodbye. While I was on the phone, Owen was petting him and his eyes were closing on their own. We got him onto a sheet, loaded him into the back of the Crosstrek, and started the 40-minute drive. I pet him the entire way. Our normally afraid dog was acting as calm as could be. Once in the clinic, they agreed his body was shutting down and gave us time alone with him. Even while petting and talking to him, his breathing was off. When his eyes started to shut again, we knew it was time. Hobo was fighting with everything he had to stay with us, and it wasn't right to keep him in pain. Our beloved boy slipped peacefully from this world before even a third of the syringe was injected.<br />
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We plan on scattering some of his ashes around the perimeter of the house. It feels right to let him continue to protect the house the way he has for most of his life. The rest will be in the house with us, as those best years of his life were spent. That is the life of our Hobo.<br />
<br />ddraigswifehttp://www.blogger.com/profile/07952795229433613418noreply@blogger.com1tag:blogger.com,1999:blog-1941593586165218078.post-17263641542550875962018-08-28T20:05:00.001-04:002018-08-28T20:05:16.688-04:00On the Right Place at the Right TimeAlmost every Saturday morning, I can be found awake early and preparing to head out. From late Spring until late Autumn my first stop is our local farmer market. There are so many amazing foods from fruits to veggies to homemade pasta and sausage and more. My favorite breakfast is the whole wheat, maple icing topped, cinnamon rolls from Moving Meadows farm. From there, it is off to the Piecemakers Quilting group, where I spend the next three hours.<div>
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Piecemakers sews for charity only. We provide homemade quilts to the local Safe House, the local pregnancy center and a foundation for children with terminal illnesses. We also sew fleece blankets for foster children in two counties. Come winter, we make fleece hats and scarves for four local elementary schools as well. It's a busy place to be! We are all a bit nutty and every single one of us has a physical limitation, be it chronic illness, heart failure, cancer survivor and more.</div>
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Two Saturdays ago was like every other one before it, except for one thing. The church we meet at was giving away free school supplies. Someone had generously donated several thousand dollars to purchase it. The problem is, three other churches had already handed out school supplies. Noon was approaching and there were still over 150 bags of supplies left. The pastor was starting to panic... and was doing so right in front of us quilters.</div>
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That's when that oh so gentle reminder ghosted through my brain. Hey, Holly, your mom teaches in Appalachia... they probably need the supplies. So, I had pastor pause his pacing while I made a call. Yes, they were desperate for supplies! The money they normally would have gotten to help provide it wasn't there this year. The principal was literally going to have to go from classroom to classroom, find out who brought what and who needed what and buy the items with her own money! I told the pastor and that panic turned into sheer joy. Word spread fast about the children in Appalachia who were going to be receiving the supplies. </div>
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More donations arrived and, by the time I picked them up that Tuesday, my full-size pickup truck bed was FULL, plus my front passenger seat! There were tears of relief as the school started making piles of each type of supply, loading them up on carts, and handing them out to the children. It was EXACTLY what everyone needed! No extra purchases were necessary! </div>
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Right place. Right time. And I was receptive to that little ghost of a reminder in my brain. Too many times I hear it and ignore it, making excuses for not standing up and acting upon it. What a great lesson to myself, and others, that great things can happen if we listen and act. </div>
ddraigswifehttp://www.blogger.com/profile/07952795229433613418noreply@blogger.com0tag:blogger.com,1999:blog-1941593586165218078.post-25713745890525303822018-06-30T16:01:00.002-04:002018-08-28T20:17:58.136-04:00On Jamyson DaviesWhere did he come from? Why emerald eyes? Who is he really?<br />
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Where there is Harlie Berryman, there is also Jamyson Davies, that much has been made clear in both novels. From the first moments he learned about her in the refugee camp (from young Jack) James has zeroed in on Harlie. At first, it was to observe, then rescue, then train, and finally befriend her. The development of their deepening relationship is more evidence of how James is focused on her... perhaps a little too much at times.<br />
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Who is he really? He does indeed come from one of the small waterside villages in Wales and grew up with Rick as his best friend. The stories Harlie is told about his past are pretty close to reality. However, the "Commander" of the Welsh bunker has a lot on his mind and a lot of secrets to keep. He also needs to make sure his team stays in top form, as the continuation of humanity is at risk... something only he, The General, Rick, and now Harlie know. He is a very complex character who reacts in a quiet but very targeted way. At times, he can seem almost to change personas when dealing with particular situations, usually due to the secrets he must keep. But as to who he really is? You need to read "Sunrise to Shadows" for that. It's probably not what you think he is...<br />
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Where did the idea of James come from? He came up with himself, really. At first, James was always in the shadows of my dreams. I could sense what he was saying but could only see his emerald green eyes. I'm not sure why they were emerald green and have spent time reflecting on it - with no real conclusions. As the dreams progressed, I started to be able to see him, but still could only sense his words. It ended up being just last year before I actually heard his voice, and oh did I hear it quite clearly! I could listen to that Welsh accent all day. By the way, that scene made it into novel 3 for sure.<br />
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What is in store for him? If you read "Sunrise to Shadows" you know there are consequences for pushing ones enhanced abilities too far too many times. Some of those consequences will linger in Book 3 and cause some drama. The trio is in a tough situation to begin with, and Harlie has to put her foot down. Just like with her, James is a bit broken at the start, and it is taking more effort than anticipated for me to get him back up to where he needs to be. I hate writing this part of the novel. It is almost painful to write, but the end result is going to be beautiful... or so I hope.<br />
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<br />ddraigswifehttp://www.blogger.com/profile/07952795229433613418noreply@blogger.com0tag:blogger.com,1999:blog-1941593586165218078.post-22742285769489924702018-06-03T14:56:00.001-04:002018-08-28T20:11:50.384-04:00On Harlie Anwyn BerrymanHarlie Anwyn Berryman... spy... diplomat...mother hen to those she cares about...the Spitfire in a trio who have many secrets to keep. Who is she? Where did she come from? How is she continuing to develop? What is in her future? These are all very good questions and ones I've been asked repeatedly. So, today I'm going to attempt to answer them.<br />
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Who is she? Harlie is the main character in the Midnight Sentinels (Midnight to Morning) series. She starts out with a different name, and her past is full of trouble. She couldn't keep a teaching job because she could tell when her principal was lying. While it was easy to make friends, it was harder to keep them because of the same thing. She could tell when something was off and she wouldn't tolerate someone lying. But then tragedy struck when the US was hit with multiple nuclear bombs and dozens of secondary attacks. The novel starts with her as a shadow of a human being stuck in a squalid refugee camp. However, after her amazing rescue and recovery, Harlie is born, and what an impact she makes upon that rebirth. Her entire first year and a half of life is a testament to hard work, determination, learning when to stand up and learning when to be quiet. It is also a lesson in learning to trust and learn the various ways a person can love.<br />
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Where did she come from? My dreams and daydreams. All of the books come out of a series of dreams I've had and keep having. She is very vivid in these dreams. I can see and hear her very clearly every single time. I can close my eyes and a scene from the novels will show up, with Harlie and sometimes James and Rick present. I can get into her mind, hear her thoughts, feel the pressure she is under, and sense her emotions just as clearly as if they were my own. Yes, there is part of me inside of her. We have similar pasts and some of the same behavior trends, but she is epic compared to myself. Harlie is so strong and resilient... or at least she was.<br />
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How, after six years of writing, is she continuing to develop? It is because of those dreams. They've never stopped. Book 3 has her broken down - more than she'd like to admit. The stubborn set to her jaw is locked into place when it comes to some things, but she's wincing and flinching and wanting to hide. That isn't like her, and I'm trying to figure out why she isn't bouncing back, why she isn't as resilient, and what it would take to bring her back up. James and Rick help out, their actions and thoughts whispering to me, showing what part they are playing in both the mess she has become and how she is working to overcome.<br />
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What is in her future? James and Rick are in her future. The three of them cannot seem to function without the others present in some form. The life they are trying to carve out in between missions can be complex at times, but it is an absolutely beautiful thing to watch, even in the most difficult circumstances. Harlie learning to lead is also in her future. Book 3 has her in a sink or swim situation and she's working wounded. However, the support James and Rick provide her and how she supports them will bring all of them around... eventually.<br />
<br />ddraigswifehttp://www.blogger.com/profile/07952795229433613418noreply@blogger.com0tag:blogger.com,1999:blog-1941593586165218078.post-91752036200012619012018-02-19T02:16:00.002-05:002018-02-19T02:16:25.462-05:00On the Pendulum SwingingIt really should be titled "On Being Vindicated" but there is a reason for everything. This post is a little different than most, as I'm hitting on a hot-button topic and how it is personally affecting me. The opioid epidemic has people pointing fingers in all directions. Some are blaming the doctors for over-prescribing painkillers which then somehow led many to become addicted to street drugs. I agree there was a lot of over-prescribing, but much of the research is saying that, no, it wasn't causing a mass group of people to shift to street drugs. Then there is the more solid research that very few are talking about. An overwhelming statistic when it comes to those on heroin and other street drugs is this - most are either from very broken homes or were abused in some way. They admit to starting on the path out of an urge or need to escape the pain caused by that trauma. They end up deeper and deeper, especially since getting these drugs are easier and easier. Either way, there is an epidemic and the pendulum which once swung in favor of helping those of us with severe chronic illness has now swung the other way.<br />
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Hard.<br />
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While my primary doctor battled UVA hospital for my right to have effective pain management which wasn't toxic or causing horrible side effects, UVA was fighting to remove everyone from any kind of narcotic painkiller- no matter what. They chose to ignore decades of research, even the latest reports, on how painful some of these conditions really are. Ehlers-Danlos, which I battle with daily, is labeled as one of the most painful - due to our joints dislocating and having constant muscle damage and train wrecks for spines. There is a ton of research to prove this. I wasn't asking for my pain to be a 0-2. I was begging to get it down to a 4. I know I'll never see a pain level of 2 ever again. Over and over I heard "If you are not on chemo, you are not getting that prescription here." Know what I was trying to get? Not Percocet, not Vicodin, not Diladud or Oxycotin. No. I was trying to get the Butran's patch... a low-level once a week patch with a ton of research showing it gives people with nerve pain their lives back, and at super low doses and without side effects. My primary doctor ended up chewing out the pain management team and wrote the prescription herself. All was good. I went from taking barely effective Tramadol multiple times a day to taking one pill on some nights and not at all on others. I had been taking up to 6 a day before that. It -reduced- my use of a narcotic drug and worked better than anything else we had tried.<br />
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Then the state of VA changed their laws about prescription painkillers... and my primary doctor had left the practice to go into telemedicine. I was having bad side effects from gabapentin and another medication and wound up in Neurology. I thought that appointment went well and we had come up with some good solutions. What she had suggested was taken to heart and followed up on to a T. I still needed the patch refilled, though, to have any decent quality of life, but UVA wouldn't write it and my new primary doctor was now no longer allowed. However, he knew of a pain clinic nearby which was all about conditions like mine, and they were known to be up to date on research for those conditions. Scared out of my mind that I was going to be told no again, I went... bringing 4 months of my medical records with me, including doctors notes. It was there I read that what Neurology had said to me, and what they had written about me, were two different things. They made it seem like I was clueless about why my eyes were so messed up and my brain was so foggy and everything else. They made it sound like I was attention seeking. They made it sound like it was that once a day Tramadol at fault for everything I had been referred to them for (It wasn't my idea to go there.) Made it look like I was seeking more medications when I was asking permission to get off of them! I felt betrayed and was bracing for more bad news.<br />
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Then I met Dr. P and his staff at the new clinic... his very kind, thorough, patient staff... The doctor and staff who said I'd not only be able to remain on Butrans, but it is EXACTLY WHAT HE WOULD HAVE WRITTEN ANYWAY! He knew my condition and the intense pain it causes. He agreed that enough other medications had been tried, and failed, and I still kept at them because I did not want to be on a heavy narcotic. I had completely stopped the Tramadol by that point, which he loved. The clinic had 2 stipulations, though. One was the opioid agreement, which I was already prepared to sign. The other was that all of my pain management had to happen there. So, on Friday I bid goodbye to Dr. M at UVA, the doctor who had been doing my trigger point injections, spine injections, and prescribing my migraine meds. It was hard to be kind in explaining why I had to go and how disappointed I was at UVA for choosing to ignore scientifically proven research in favor of an extreme "One size must fit all" approach. I feel horrible for those who are stuck with no other options and have to either take super toxic, minimally effective medications for a hint of relief or who are abandoned to be in pain due to the "must be on chemo to get anything" approach. The pendulum needs to find a middle ground. I fear that, out of desperation, many are going to go out and seek street drugs to find relief because the hospitals are abandoning them. Statistics are already showing that this is happening, making the epidemic worse. It's scary how we've been left to either curl up on the couch and wish we were dead, or choose to go an illegal route and risk dying anyway. I hope that middle ground comes soon for my suffering friends. I am thanking God for this new clinic and Dr. P for letting me keep my quality of life, one little weekly patch at a time.<br />
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*NOTE* Just a reminder that I am doing many other things to help keep the pain at bay. I am on a strict anti-inflammatory diet with minimal refined sugars, flours, no nightshades, no dairy, barely anything pre-packaged etc. I also have splints, therapy tape, massagers, TENS unit, natural supplements and more which are used. They do help cut the pain down some, but nothing can fully eliminate a 40-year-old brain with the body of a 90-year-old who has torn muscles 24/7, damaged joints, frayed and over-sensitive nerves (secondary Fibromyalgia) and a trainwreck for a spine (more on that later, just know the MRI was super ugly.) I cannot take NSAIDS, due to breaking out in bruises and severe GI upset.<br />
<br />ddraigswifehttp://www.blogger.com/profile/07952795229433613418noreply@blogger.com3tag:blogger.com,1999:blog-1941593586165218078.post-37491223163903573342018-01-16T01:20:00.002-05:002018-01-16T01:23:31.106-05:00On Turning 40Yesterday was my birthday. Yes, another year older, another milestone reached. It was the big 4-0 this time, and it got me to thinking. Why is forty such a big deal? Is it because, decades ago, it was considered middle age - you know, back when it was rare for people to live past their 80's. Was it because that, by forty x goals should have been made, and you should be settling into y kind of life? Someone, please educate me on why this is a milestone.<br />
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I know one reason why I wasn't keen on turning forty. People love to say "oh you are over the hill now!" No. With the Ehlers-Danlos Syndrome, I hit that point at thirty. In the past year, I've lost three EDS friends. One was just in her twenties. The other two were in their sixties. In 2016, the EDS friends I lost were all in their fifties and sixties. We don't seem to live much past that. Too many things go wrong. Too many things fail. The weeks leading up to my fortieth were the first time I really sat down and thought about what the end-game of this disorder looks like. I've been so busy fighting it that what is coming down the pipeline has been a distant shadow, even when watching those with EDS who are older than me go through it all. Denial can be a pretty thing until it smacks you in the face a few times.<br />
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My twenties and thirties were pretty awesome times. I travelled a bit, did storm chasing for three years in Colorado, did respite work for some pretty amazing kids, moved a lot, got back on my feet after disaster, married, bought a house, started growing our own food, learned to quilt and sew better, wrote and published two novels and more. The last few years, though, not much of anything has happened. Gardening has become much harder, though I still try every year. More adaptations need to be made to the beds, but the resources (those who can do the labor to install said adaptations) are few. I'm in Physical therapy just about as much as I'm out, due to injuries from trying to do gardening and sewing. I haven't been able to get to the gym to do water therapy, as it wipes me out too much afterward. I cannot get to the point where it doesn't. It's all this little annoying stuff which screams of the decline EDS can cause. I didn't want to turn forty because I know there is going to be much more of this. I need to be prepared to fight it as I've fought everything else Ehlers-Danlos and its comorbidities does.<br />
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So, forty was met quietly. No big parties, no hoopla. Just a couple of meals out and two little shopping trips. It was also met with me staring down what's coming and vowing to not let it break me. The new state laws regarding my pain management could easily do just that, mere months into this decade, but I pray not. I was just freed from two very toxic medications and do not want to go back down that road when we have something which is giving me some quality of life back. I'm staring down the injuries, staring down the predictions, and trying to turn the opposite direction. I'm gearing up to fight as I have been fighting. I'm gearing up for more and hoping the forties end up knocking the other decades out of the water.<br />
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#EhlersDanlos, #ZebraWarrior, #forty, #FightingEDSddraigswifehttp://www.blogger.com/profile/07952795229433613418noreply@blogger.com0