Tuesday, August 28, 2018

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. 

Saturday, June 30, 2018

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.

Sunday, June 3, 2018

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.

Monday, February 19, 2018

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.


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.

Tuesday, January 16, 2018

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

Wednesday, December 27, 2017

On A Year of Changes

We never did get a Christmas letter or cards out this year. As shown in the prior blog, 2017 came in like an EF4 tornado and nearly tore our world apart.  We had Amber living with us, Owen was back at the bottom of the mountain when it comes to his battle with chronic depression and what the PKU does, and I was facing having to start on IV therapy to get the heart side of the Ehlers-Danlos with Dysautonomia back under control. I was at my physical, mental, and emotional limit on what to do.

Owen's finally seeking professional help again started to make a change. He was slowly coming out of all of the negatives, especially after being put back on the one depression medication. He's back working on his HAM radios and is talking about getting back into woodworking. While his job is still a major trigger, he's learning how to work with it. In April, I joined him in seeking counseling. Every other Wednesday, we drive down to UVA Behavioral Medicine together and go to our separate therapists. While couples counseling still really needs to happen, we've had trouble with finding someone who takes our insurance and also can work around my complex schedule.

That is because, in May, I was given a big promotion at work. I now don't just advise/manage 30 students, I also run our schools new community service and community involvement initiative. That meant researching and developing ways to bring more student and parent interactions to Bridgeway Homeschool Academy. The first step was making online clubs. I now spend every Tuesday running two Minecraft clubs for middle and high school students, and the 2nd and 4th Wednesday is managing our National Beta Honor Society club. There are also book clubs, which others are leading. It's been a great boost! Phase two will be kicking off in the spring, and I'm excited... but oh was it overwhelming for a bit. I also babysit my nephew on the Wednesdays I'm not in therapy, and sometimes that falls the same day as National Beta.

Other things were happening as well. My body and brain were "done" with some of the medications I was on, but we didn't really know what to do. It made for a long spring and summer. Very little, outside of work, was being accomplished, including the garden. I was back in physical therapy, this time for tearing up my shoulder blade in some really bad dislocations. I also had to start IV saline to stay hyper-hydrated and keep the tachycardia at bay. I wanted to write, had TONS of ideas and many posts written in my mind, but could not mentally function enough to do most of it. Now it was my turn to make a visit to Neurology (with a side visit to GI because the gastroparesis side was in a flare.) Neurology was quickly alarmed by how my eyes were not focusing properly, I had a slight tremor, my responses were slower than before, and I was upset over the constant weight gain, no matter what I did. They said I needed to quickly be taken off of two medications - one which helped with nerve pain and the other with migraines, both which caused the weight gain. We found a derivative of the migraine one to replace, but the nerve pain one just needed to be gone. The switch was made (with only two mini-neurological events, praise God!)

And I came alive again! Just like that. Boom. Yes, the nerve pain is a bit worse now, but I'll take it. My brain is no longer moving in slow motion. Creativity is back, so is ambition. I finished my second novel in record-breaking time, some days getting 10-12 pages finished. After four years of struggle, it was an amazing experience. We never realized how badly the brain side-effects had been! I re-edited novel 1 "Midnight to Morning" and re-released it. "Sunrise to Shadows" came out just 12 days ago, right in time for Christmas! I jumped right into writing book 3, because these characters will not be quiet, and my brain is letting me work. My job, which I had been struggling with since August, started becoming easier again (though I was appalled at the mistakes found during those months.) Despite the expected decline Ehlers-Danlos is causing physically, my brain is awake, active, and needing constant engagement once more. I'm loving it! Therapy has been helping get the emotions back under control and providing me with resources to work through problems as they arise.

I ended 2017 on a high note. It has been a mind-boggling year!

Sunday, January 29, 2017

On MDD and Marriage

This is going to be one of the most gut-wrenching posts I've made yet. Honestly, if this gets published, it is a serious act of bravery (or stupidity) happening. Maybe it will just be shared among a few close friends, maybe the link will show in Facebook. I'm not sure yet.

Owen has a mental illness. It is tearing us up. I am not strong enough. I'm lost as to how to help him anymore. It is a demon, a curse, a chemical imbalance combined with brain damage which has made home life so very difficult. I'm scared we won't make it. There. I said it.

Major Depressive Disorder with Social Anxiety Disorder came formally into our lives about five years ago. Owen was working in an abusive environment, and we thought the change in his behavior was due to that. Only, when he switched jobs it stayed and then progressed even more. I saw the man I love start to lose interest in things he once loved. Hobbies he had just started to thrive in were left to gather dust. Our conversations grew shorter as I spent more hours looking at the side of his head as he was more and more lost in his own sad world. Engaging him in meaningful conversations were constantly turning into disasters with his tone showing strain, voice louder, going from calm to rage in an instant. It was like living with a hurricane whilst being on a roller coaster. It was frightening and I wasn't sure what to do. It took a member of his family committing suicide, and Owen asking me to remove the guns from our house, before he first sought help. Medications were tried and failed. More were tried and we had some successes. For a time, he had a great psychiatrist who engaged him in behavior therapy as well. Then the psychiatrist left, his neurological issues became more prominent, and this new crisis became the focus. The new psychiatrist was an idiot who didn't understand the part PKU and brain damage played in his disorder.

It took us two long and painful years (and threats to contact patient advocacy groups) before a referral was made to neurology. By then, Owen couldn't walk without stomping, shook constantly, had horrible vocabulary aphasia and could barely work. Dopamine Reactive Dystonia (otherwise known as PKU Parkinsonism) was diagnosed, and Owen was put on dopamine. Feeling great again, he jumped back into HAM radio and quit his medication for the depression. At first it was okay enough, but he quickly regressed. This time, though, it was different. He was coming home from work, barely speaking, going to the computer, and I wouldn't see him until dinner. Even then, he'd engage for a few minutes only and then be back in his own sad world. I made attempt after attempt to get him to spend more time outside of it. This time, he'd act like there was no attention span. More than one direction or comment at a time and he'd get flustered and shut down. If I was too long in answering, moving, giving a next step, he'd get frustrated and shut down. He'd start to work on a basic task and if one thing went wrong, or I didn't fly to his side when he called for assistance, he'd shut down. He started blaming everything that happened on everyone and everything else. Over the past months an obstinate streak has started, and I have no idea how to handle any of it.

I've tried so many different ways to work around these things, but to no avail. He was insistent that it was ADD or maybe his thyroid or his PHE levels from the PKU (he has a wide selection of low phe foods to eat in this house at all times. I make much of it from scratch... yet he cannot "be bothered" with microwaving it.) I've heard that because I did something x years ago and it damaged him for life (the offense varies with whatever is currently setting him off) or someone said something ten years ago and he never could get past it. He'd say I didn't put the laptop away enough to spend time with him, even when I'd stop everything I was doing to sit next to him while he was at his computer or put my arms around him there and try to engage him in conversation, or I've kept it closed while we watched a show so he could curl up with his head on my lap. It was a cut on his finger which stopped all assistance in the house for a week. A small foot issue kept him freaked out and at the computer only for three months (recall I function with daily severe pain, dislocations and a heart condition... but, as he says, I'm "used to it.") Anyways, the story changes constantly. He'd change his mind or retell a story differently just to be the opposite, make it sound like I was lying, leave in the middle of conversations, or go to bed because he didn't get his way in something. The subject for digging in his feet changed constantly. I never knew what was coming through the door.

After speaking with genetics again (and going to patient advocates over the same dawdling by them) Owen had a neuro-psych evaluation in November. It isn't ADD. It is not his thyroid. It isn't even the Dopamine Reactive Dystonia... all of this is from the mental illness Major Depressive Disorder. This Wednesday he starts intensive behavioral therapy. If we can get psychiatry to call back (one referral Dec 26th and 3 follow up calls later and still no appointment) he is to start back there with a proper doctor and not a resident. They also recommended couples counseling. Owen told them I take the brunt of everything and shouldn't. We need that counselling...

Because I'm broken. I'm confused. I'm out of ideas. I'm about to collapse under the strain of what mental illness has done to us. Nothing I do is helping make progress with Owen. If anything, it makes things worse. If I ignore the behaviors and focus on his needs, it isn't enough for him. If I try to talk him through an issue, he gets upset or shuts down. If I work day in and out, going above and beyond... still not enough. If I use half of my paycheck on keeping a house cleaner because the state of the house is a trigger and I cannot keep up with it all, nope, still not enough because a scrap of food is on a plate or clothes are not folded. I'm going to the Lord in prayer constantly.

I miss Owen. I miss the man I married. I miss our conversations, our laughter, the hours cuddling, all of it. Can I continue here with the way he is now? Yes. I won't leave him. I'll fight with my dying breath to help him. I love him more now than ever, even with all of the pain and sorrow. It is so hard. So very hard. Yet, I hold out hope for the next phase in treating him, the next therapy, counselling, medication, whatever it takes. Even though it seems I can do nothing right, I must remember it is mostly the mental illness and not him. There is hope that, one day, we'll get this demon back in the box, and I'll once again see more glimpses of the man I know is still there. He'll get back into his hobbies. We will go back to more time together. One day, mental illness won't be tearing our marriage apart.

*Note* Please do not attack me or go telling family etc just because I've put this out there. Writing is how I survive. I have pages and pages of ramblings from these past five years. No one sees them. No one really knows. I'm tired of being in the dark, dragged along by what this disorder has done and wrote this out so those who I know love Owen and me so much can really know what is happening.*