On 2018: Christmas Letter

As 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!

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.

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.

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...

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!

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!

On the Life of a Hobo

Note: I'm not really sure this blog is ready to be written and published, but I'm going to give it a try.

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.

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.

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.

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!

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.

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.

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.

We didn't even have a week...

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.

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.

On the Right Place at the Right Time

Almost 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.

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.

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.

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. 

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! 

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. 

On Jamyson Davies

Where did he come from? Why emerald eyes? Who is he really?

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.

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...

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.

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.

On Harlie Anwyn Berryman

Harlie 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.

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.

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.

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.

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.

On the Pendulum Swinging

It 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.

Hard.

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.

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.

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.

*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.

On Turning 40

Yesterday 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.

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.

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.

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.

#EhlersDanlos, #ZebraWarrior, #forty, #FightingEDS