MonSter – Scribbling For Fun

May 31, 2020

The Queen of Ghosts and the Precipice of Change

“I’m going in to the neurologist tomorrow to get the results-to find out whether or not I have MS,” I told him, I looked up into his eyes, choking on tears.

He wrapped his arms around me, pulling me closer, comforting me in his warm, strong arms. “It’s okay, baby. I’ll be there for you. Call me afterward.”

That was 20 years ago. To this day I can remember how silky the warm sand felt beneath my feet on that South Carolina beach. How the beacon of the lighthouse flashed like a brilliant white star and the salt from the ocean spray tasted on the night wind.

I’ll never forget the pain when he didn’t answer the phone.

It wasn’t the first time I had been ghosted, nor would it be the last. But it would be the first time I was ghosted because of my MS.*** I faced the diagnosis that would end my Naval career alone.

I look at the calendar and realize I am fast approaching my MS diagnosis anniversary (June 1). The year 2000 was a year of tumultuous change in my life. So far, it looks like 2020 will be as well. Not just for me, but for so many others. I find myself once more standing on the precipice of an enormous shift in my life. But unlike in 2000, I am looking forward to the leap, even though I am not entirely certain what the future may hold.

On Monday, I will head into my old office to pack my desk. The end date for the job that brought me to Alaska is coming quick. For the first time in almost 25 years I am going to take a break. Admittedly, I am both nervous and excited at the same time.

The only person you are destined to become is the person you decide to be
Ralph Waldo Emerson

I look around at 2020 and wonder how I will remember this year 20 years from now. Will it be with a sense of darkness for a year of strife? I’d like to think it will be bittersweet. I want to look back see a feeling of hope, that we, as a society stood at the precipice of self-destruction and chose a better path. What do you think will be the choice? Who will you choose to be? We’re half-way through.

Thanks for reading! Sorry for the rather gloomy blog this week. I promise next week will be more uplifting.

Ray and I have a lot of projects planned for not only this summer but beyond. We’re going to be doing experiments with our solar kit out at the cabin and hopefully some wind studies on our 31 acres in the hopes of putting in some wind turbines eventually. We’re building two new structures on the property this summer.

For those who follow me on Instagram, you know that Ray is working on several new sculptures for the property. In the meantime, my first self-published novella, The Dark Land is out on Amazon. I am working on the sequel, as well as continuing to query some of my other novels.

The legend of Alaska’s Headless Ravine is steeped in blood. Its hunger for human flesh never sleeps, even in the deepest cold of winter. Courage, skill and love will be stretched to the limits on the frozen boundaries of The Dark Land.

We have some other projects up our sleeves, TBA soon.

Side Note:

***I know some will ask, how do you know he ghosted you because of your MS. This is the cautionary tale of:

Don’t date (then ghost) someone you work with.

This could practically be another blog unto itself. But other coworkers knew we had been dating and found out why he suddenly dumped me. Apparently, he didn’t think it was that big a deal, so he told everyone the truth about what he’d done. Let’s just say the rest of the guys at work let him know what a sleaze move that was. I didn’t have to. The best revenge is sometimes when someone else makes themselves look like a jerk. Even though it really hurt at the time.

True Friends

And to give credit where credit is due, while I got ghosted, dumped and diagnosed, three of the most awesome guys I had the privilege to serve with in the Navy requested leave from the Enterprise and drove down to Charleston to cheer me up. I’ll forever be grateful for their kindness and support. This is also my answer to the question, can men and women be friends. Absolutely. Friends and shipmates.

Mikey, Dave and Drew, three of the greatest friends and shipmates who came to my rescue when I was feeling my lowest. I will be forever grateful for their friendship.

December 16, 2019

Reflections-2019

Warning sign on the Taylor highway during winter, Alaska driving, travel, DM Shepard

It seems like for everyone I talk to, 2019 has been a dumpster fire. I know that I will be happy to see this year in the rearview mirror. For those of you who know me/follow me closely, you know that I have struggled with MS and other health related issues this year. Then in August, the company I worked for announced that they were selling our business unit. These last few months I have spent a lot of time reflecting on my career path and what I want to do going forward.

It surprised a lot of people, given that I’m only 41, that I opted to package out. Instead of applying for a job with the new operator, I requested to be severed. For me, the choice was simple. This is an opportunity to make a deep change in my life. I have explained in my blogs, that I have always enjoyed writing. I enjoy engineering and math just as much. In the last few years, I have felt that my job was taking me down a path that led me away from what I enjoyed doing. I was no longer an engineer, I was pushing paper and collecting a paycheck. Meanwhile my blood pressure was ratcheting up, as I argued against decisions I disagreed with, only to get overridden. The stress seemed to eat away at my very being. The only thing making my job worth doing was supporting the great technicians and operators I work with.

I hinted over this weekend of exciting announcements to come. I’m still waiting for my final severance date (I’ll get my letter in the mail Friday—I’ll be sure to let you know). But in the meantime, Ray and I are laying our plans for the future.

Monday Ray and I will be putting the down payment for our first solar kit out at the cabin. We’ll be sharing pictures and posts as we design and install our new solar panels, inverter, charger and batteries. We’re looking forward to the greater flexibility as we stay out at the cabin for longer in the summers and plan out adventures.

We also have some major construction projects in the works for the summer of 2020. We poured our foundations this past summer, but in July, we will be erecting a new cook shed and shower/sauna. It feels a little weird, bringing creature comforts to our cabin that has been rustic for so long. But as we transition from city living to Chicken these are changes that will make living off-grid more convenient.

Breaking up the snow for water-I’ll really be looking forward to when we have a better water system!

We also plan on taking a few months and driving the ALCAN (a trip I have never done before). We’re going to do an extended road trip to visit friends in the lower 48. As some of you may have noticed, Ray and I have kind of an obsession with old ghost towns. Expect to see lots of pictures and historical blog posts about our adventures.

The Sternwheel Graveyard, one of our favorite stops on our Dawson City, YT adventure in the summer of 2019

We’re not entirely sure what the long term will bring, but I am excited for this leap. I plan on focusing on my writing in 2020 and hopefully bringing my fiction works one step closer to getting published. I also hope to get my own engineering projects/start-up company off the ground. I’m grateful for this deep-sea change. This is a true, once in a lifetime opportunity, and I look forward to sharing our plans and schemes with those of you who keep following me.

Me out in Chicken taking a break with Jane Friedman’s the Business of Being a Writer

December 2, 2019

The MonSter and my Anniversary

It is amazing how much of our identity as an adult becomes tied to our careers. I have now been working in the power/energy industry in one way or another for 23 years. I’m currently on hold with the company I work for, our business unit has been sold, and after 13 years, I am about to be severed.

Don’t worry—it’s actually a positive thing. I am looking forward to what will hopefully be a new chapter in my career. A chance to strikfdse out from what I have known and try something completely different. Meanwhile, as I sat down to write this blog post tonight, I looked at today’s date and realized that for the first time in 19 years, my anniversary snuck up on me.

Nope—not that one. My wedding was in June of 2010. I’m talking about a different anniversary. One that I was completely unprepared for at the time.

19 years ago today (December 1, 2000), I walked into a small office in Goose Creek, SC and signed a few pieces of paper, officially ending my Naval Career. This process had been over 8 months in the making. In May of 2000 I received the devastating news confirming that I had Multiple Sclerosis. It’s not that I didn’t know something was wrong. I had been complaining to the medics for at least 2 years at that point. But until I started going blind in my right eye and I lost the feeling in my right arm, I wasn’t taken seriously. I was told many iterations of the following:

You’re a hypochondriac
You’re imagining things
It’s not that bad—tough up
All women have problems with their bladders
You’re fat—if you just lost a few pounds this would all go away
You’re just faking it to get out of work

But once they made an official diagnosis, they streamlined my departure from the Navy. My primary care doctor’s attitude didn’t change—he was still convinced I was “faking it” until the day I walked out the door. Even with positive blood results and active lesions on my brain. Yeah, he was a gem.

But there I was, 22 years old, diagnosed with a chronic illness, and completely cut loose from the path I had been determined to follow. A path I had been assured was guaranteed for 8 years. It was a strange feeling being suddenly adrift.

A few days later I packed up my little red Hyundai Accent and pointed it toward the West Coast. I stayed with my parents for a few weeks, trying to figure out a new life plan. All the problems that I had left behind when I joined the Navy were right there waiting in my old hometown. By January, I had accepted a job in Seattle and once more I hit the road for something new.

They say hindsight is 20-20. I would say it is even more than that. Almost microscopic at times. Freshly diagnosed with MS and still in denial, I wasn’t ready for what lay ahead. If I had it to do over, I probably would have taken more time (even before I got out), to get more help adjusting to my diagnosis. But I didn’t. I didn’t want to acknowledge that there was something really wrong. And certainly the people in my life and the time didn’t care or didn’t know enough to say otherwise.

But as they say:

Alea iacta est

The Die is Cast

I can’t go back and undo the past. But as I look back on what has possibly been one of the roughest years MS-in all of the 19 I’ve been diagnosed (2019 sucked in every way it could), I can hope as I make this newest transition that I am choosing a healthier and wiser future.

I’ll let you all know December 20^th what my official fate is. I have some new and exciting plans depending on the outcome.

In the meantime, I will keep posting about Alaska and Chicken. Coming up in December I have a few book reviews in the queue and some additional historical features based on our trip to Dawson City, revolving around my research for my novel, A Drink of Dakrness.

November 11, 2018November 11, 2018

Charleston to Victorville

Sitting here in this hotel room by the ocean, the waves are crashing violently against the spit outside. It’s funny, we planned this little stay-cation because the weather was predicted to be pleasant and calm, but that’s Alaska for you. A storm moving up the Prince William sound is pushing high wind into Homer where we are.

View from the Lan’s End Resort at the end of the Homer Spit

I have always loved the sound of the ocean, in all of its moods, as I sit here listening to it tonight, I am trying to decide exactly what to blog about. My mind is a jumble of thoughts about the past. Partly, because I saw my primary care doctor this week and she ordered a whole new slew of tests that I will have to grit my teeth through, partly because I have an appointment with my neurologist later this week, and she’ll order a complete battery of tests and medications to go with it, and then mostly because I am rapidly approaching another milestone. Here in a few weeks, it will be 18 years since I packed my car, said good bye to friends and made the long, lonely journey back to California after being medically retired from the Navy.

It was possibly one of the biggest mistakes I made after getting diagnosed with MS, trying to go back home. All of the reasons that Ileft in the first place were still there waiting to for me. Ever the optimist, I thought it would be different for some reason. The only thing that was different was me.

Still I made the drive. It was early December. Given the time of year, the uncertainty in the weather, and the fact that I was makingthe drive alone, I decided to take the southern route home. I drove south from Charleston to Jacksonville, stayed the night then hit 1-10. I stayed two nights in New Orleans, drove from New Orleans to San Antonio, San Antonio to Phoenix, then Phoenix to Victorville.

The Devil’s Punchbowl, about 40 minutes from Victorville and the setting for Apricot Shadows, one of my Paranormal Suspense Stories

While I moved back in with my parents, there really wasn’t any place for me at their house. I was sleeping on the couch and trying to manage a chronic medical condition with no real support. Meanwhile I was still in denial that anything was truly wrong with me.

Desperate to escape from Victorville and get away I applied for jobs immediately after the New Years. I was offered a job in Seattle, WA as a field electrical engineer. I had always wanted to see Seattle. Before I got diagnosed with MS, my orders were for the Lincoln out of Everette, WA. I eagerly signed to start in late January and packed my car once more. For the first time in months, I felt hope. I was going somewhere, anywhere but here.

The view of the waterfront in Seattle on a sunny summer day, Seattle would be my home from 2001 to the end of 2006

My little red Hyundai loaded and ready, I put it in drive once more and pointed it north for a new adventure.

July 16, 2018July 25, 2018

It’s all fun and games…

…Until there’s new lesions on your brain!

Click, click, click, click, click

Growl, growl, growl, growl, growl

Click, click, click, click, click

Growl, growl, growl, growl, growl

Click, click, click, click, click

Growl, growl, growl, growl, growl

For those of you who have never had the pleasure of sitting in an MRI Machine, having a full scan of your brain and spine, this is about what it sounds like. That being said, some of the more modern machines can pipe in music of books on tape, but the more rustic, it’s just you alone, in a dark tube, thinking. Fortunately, I’ve never been claustrophobic and usually I freak the technicians out because I get too comfy and fall asleep and start snoring. Hey, it’s easy when they swaddle you in a nice warm blanket and stuff you in a dark place where you can just ponder, at least, that’s what works for me.

If it’s just your brain, it’s only about an hour. If it’s your brain and C-spine with contrast, ninety minutes. Full spine, upwards of three hours. Imagine, lying in a tiny tube listening to nothing but the above and your own thoughts for three hours. They pull you out at some point, jab you in the arm with a needle and inject you with the contrast dye so they can see active lesions on your brain (after the military and MS, no fear of those any more either). Fortunately for me, I have a pretty vivid imagination, and no fear of confined spaces, so most of the time I’m fine. I can entertain myself indefinitely, I just have to remind myself not to breathe or swallow while said noises are taking place, or they’ll have to repeat the scan and I’ll be there longer. The limiting factor is my bladder, which is a whole other blog topic. For those of my friends out there with MS, they feel my pain.

After 18 years of having MS and migraines, I feel like I am a human guinea pig when it comes to health care and the VA. I recognize that in spite many things, I am fortunate, I have health care; but sometimes, I wonder what they are doing to me. I have had 25+ MRI’s (forgive me, I lost count at some point) with contrast in 18 years. Also, I have had more than 10 CT’s scans, plus numerous X-Rays. I joke with my husband and my neurologist (ok, at this point it’s not a joke anymore) that I am going to donate my brain and my liver to medical science so they can figure out what the heck is the deal with not only relapsing-remitting MS, but contrast dye, and how it effects people.

I was SOOOOO close! After sixteen years, my MS was showing NO signs of progression. At the end of 2016, my neurologist felt that things looked so good, I didn’t need an MRI for three years. Joy!

On top of that, we had gotten on top of my migraines with a combo of me watching my dietary triggers, adding magnesium and vitamin D to my diet, and just watching my stress levels. Everything was turning up roses.

And then the mole people came out.

In 2017 I had a massive flare up of MS where I lost vision in my right eye for a time and had trouble with coordination. Unfortunately, when being given massive doses of steroids and immune system suppressants, your immune system takes a blow. I suffered from a severe case of pneumonia that winter, which took me “officially” three months to get back on my feet, but I didn’t begin to feel like myself again for about eight months.

But I clawed my way back to the surface, and here I am again. My doctor and I learned a lot of lessons. Fortunately, she’s on my side, and already she has said that next time (hopefully there’s not a next time) she’s pre-emptively writing me a note to have me take time off work when I have to take my treatments. She wants me to rest on a beach warm and sunny while this crap they give me eats away at me. I’ll take that.

Unfortunately, my last MRI came back with new lesions, so I’ve got to slide back into the tube this week and have another go. While I’m in there, I’ll hopefully dream up a New York Times Bestseller that will knock everyone for a loop. The options if the new MRI come back bad again aren’t pretty, but I’ll deal. And I’ll dream.

For those of you out there with MS and migraines, how is it going with you? Check out my website and drop me a line. I’d love to know how you’re doing out there.

May 21, 2018July 25, 2018

The MonSter Awakens

Sunrise and sunset during the arctic winter.

I sit here in my dusty office in Prudhoe Bay Alaska, winding down for the day, I look at the date on my computer and I realize I am a little over a week away from my anniversary. Nope, not my wedding anniversary, that’s later this month. The anniversary I am speaking of is the date that changed the trajectory or my career, my personal life, everything that I knew about myself at the time. The date was June 1, 2000.

This is a tough one to write. While a few of my closest family and friends know “what’s wrong with me,” it’s something I have kept to myself for many reasons. This blog is a coming out of sorts. Shining a light on the MonSter I have kept carefully contained in the closet. I think I am also about to find out, just how many of my “Friends” really do read my blog posts. I realized after I started blogging, this disease and disability is so intertwined in my life, who I am and my writing, that it needs a voice of its own. This blog will probably become a category all unto its own as I write about all the things I pertaining to the MonSter, but I figure this is a good start.

I knew something was wrong. I had known for a long time. The strange medical symptoms had finally reached a tipping point when my right arm, and right side of my face went numb, along with the blurriness in my right eye becoming larger and larger. The military doctor I had been seeing could no longer blow me off as just being a hypochondriac or his other favorite, “You’re fat, you just need to lose weight.” I was thinner than I am now, but I digress.

I remember walking into the neurologist’s office on that sunny day with mixed feelings. I had completed the MRI’s and other blood tests they had asked for. I had spent three weeks on my back, trying to recover from a lumbar puncture test that wouldn’t heal properly. The neurologist had warned me ahead of time that I should probably have someone come with me to the appointment, anticipating bad news. Since my family lived 3000 miles away in California, I had no one close who could come with me to the appointment. A fellow sailor on my crew in the Navy volunteered to drive me. Part of me was hoping they were wrong. It would be something they could easily fix. They could just give me a pill or I could just lose 10 pounds and all the problems would go away. Though it would be great to have a definitive answer; I didn’t want it to be what they suspected: Multiple Sclerosis.

I don’t remember much about that appointment itself. It’s strange how I held it together just fine in the doctor’s office while he delivered the news, gave me pamphlets on the medications he was starting me on, and resources for information on the disease. What I do remember is crouching down in the elevator as Paul and I rode down, eyes finally blurring with tears as the information sunk into my brain.

I had Multiple Sclerosis. My Naval career was over

I couldn’t see much past that at that moment. My world was crumbling around me. It would take another 6 months for the military machine to process all the paperwork, but by December I was “retired,” and a civilian again.

In the book Anne of Green Gables, by Louisa Maude Montgomery, she refers to “the bend in the road.” This was definitely a bend in the road I didn’t see coming. For better or worse, it shaped my life in a way that can never be taken back. I will do my best to explain the path I took, in the hopes that it helps others, no matter what you’re dealing with.

Hope you enjoy the ride as much as I did. Fasten your seat belt, and hold on to the “oh—” bar, it’s going to get bumpy.