Life & Writing Updates

Things at Pavlik HQ have been busy as usual.  Gunner, my husband's retired EOD K-9, crossed the Rainbow Bridge on March 19.  He was a part of our lives for nearly a decade, so we're rediscovering "normal" life where we can and making up the rest as we go.  Gunner was so much more than a pet.  He "spoke" five languages, came to the United States from Slovakia, and had the mentality of a 6-year-old.  He was Tim's partner for 9 years, putting his life on the line every single day.  They were attached at the hip, even after Gunner retired and spent his days at home with me and the cats instead of with Tim.  As soon as Tim got home from work, Gunner lit up, always excited to see his guy and to return to his side.  The house is empty and quiet without him, and his absence has left a large hole in our lives.

In other, typically-Pavlik, news, I was diagnosed with a rare genetic disorder.
  It's not great news by any means, and might end up being the worst news I've ever gotten, but it does answer so many questions for my doctors.  After more than 5 months of my doctor and I arguing with insurance, we finally approached the lab directly and they agreed to run the required DNA panels at no cost to me.  This is an insanely great development, as this disorder has several subgroups, one of which being fatal, that can be confirmed with DNA testing.  Additionally, there is a global push for genetic testing to further research.  There is no cure and currently no adequate treatments for the defect itself.  People with this disorder are born with faulty collagen and not only suffer through life, but sometimes live rather short lives.  The results should arrive any day.

As is also typical for me, when I need something good in my life, I make something good in my life.  Today, I received my physical proof for my short story novelette, How to Make Lemonade.  I've had fun developing a few digital images using both photographs and original drawings, which I then replicated via pencil sketch and colored using blended oil pastel and chalk/charcoal pencils.  To complete the illustrations, I then merged the digital and physical copies and created hand-touched pictures with the added depth of digital.  I will post about this separately soon.  This should go live by the end of next week!

I'm still rather active on Instagram.  The writing community there is supportive and interactive, and it's nice to be apart of a group of like-minded individuals.  I'd been searching for a support group for my health, but I don't fit in with the MS or EDS communities, although both are helpful at piecing together ways to cope with my unique needs, so it's awesome to connect with other authors, writers, and readers.  It has truly worked wonders for coping with everything despite being completely unrelated to my health.

In fact, I've connected with an author whose books I enjoy, Serene Conneeley, who interviewed me for her Camp Nano MoWri daily challenge for today.  Check out her site to read the interview and check out her books, HERE!  I also reviewed one of her books a few posts down.  And I enjoy interacting with author Ruth Miranda, whose Blood Trilogy I am currently reading.  The review of the first book, BLOOD, is also in the posts below.  More reviews coming soon!

Finally, I'm preparing for my speaking engagement at the Tolono Library on April 23!  The library has received quite a bit of interest, so I'm nervous.  (laughs)  I'm seriously looking forward to it, though. I love talking about my books, the writing process, and so forth, and I'm not afraid of talking in front of people.  I am a little scared that my MS brain will steal something from me mid-sentence or mid-explanation, but that's a daily thing, so I'll deal with it, like I deal with everything else!

Bye for now!

   

I'm on Instagram!

Background Image:  Public Domain License;  Quote Credit:  Kastie Pavlik

If I didn’t neglect this blog, I’d probably write shorter posts.  Imagine that!

As is the norm of my life, I am overwhelmed with lots going on, especially in the health department.  But!  As much as I want to update on that, it’d be best to wait for concrete results.  For now, we are assuming the worst (with just cause - there is 0% chance of good news).  Soo, let’s talk about Instagram.

I am so late to the party.  I never understood the appeal of a platform based on photographs – and I love photography.  But I get it now.  It’s pretty cool seeing all these little slices of life from around the world.  And I’ve connected with an awesome writing community and readers, and all around fun.

Being new means I’m learning and experimenting.  Blog upon blog offers the best hashtags or ways to boost follower numbers.  I’m not going to do that.  It’s not like I know enough to do that anyway!  But!  I will say this:  most Instabloggers recommend a streamlined page.  You know – find your one thing, stick with, and post consistently.

None of those bloggers have met me.  Have you met me?  Yes, I could exercise some self-restraint, I suppose.  But that’s rather unrealistic.  Because, again, have you met me?  Or seen my leaning-to-be-read pile because I have NO self-restraint at book buying?  My name is the antonym of self-restraint.

Thus, express no surprise at a feed that looks like random circus puke.  Hm?  But maybe prettier than that sounds?

I have too many hobbies and enjoy too many things.  This is nothing new, but it’s gotten worse – which is actually a good thing – with each new diagnosis or new symptom or new day stuck in bed.  (Oh woe is me . . . or whoa, if it’s a Bill & Ted moment – queue guitar riff.)  It means I'm busy carping all those diems!  (Thanks, Summer.)

Excluding the first month or two, there is a method to my Instagram madness.  Starting on the right, I post about writing, then cats in the middle, and then random but usually comic/cat/art-related something or other on the left.  Three posts every morning.  The weekends mess up the order sometimes.  And I do free-peak fridays where I post a page from one of my books, which, with the current writer's challenge, also sometimes messes things up.

The gist is, my one thing is *everything* under the sun and moon, and sometimes beyond.  My passion is writing.  I love my cats.  And I enjoy life.  I’m eccentric, eclectic, and unique.  I’m something of a medical mystery, so I want to bring awareness to my health.  Hopefully, I can inspire someone else who is suffering.  You know?  Finding your passion, reveling in what you enjoy, and embracing your life can be the most cathartic thing you can do.   I put it on a picture.  It must be true!

 

I’m certain my feed will evolve.  And I hope it continues to grow.  I’m not a Follow-for-Follow person (sometimes I will, though).  I don’t want to superficially inflate my numbers or (no offense) junk up what I see.  Instagram is freeing, in a way, and I truly enjoy interacting with the other authors, writers, readers, artists, cats, and people that I’ve never met.  When I friend someone on Facebook, I interact with them.  I don’t just collect people.  It’s not quite as easy to do this on Insta, but liking someone’s photo is a simple interaction.  I'm still in that awkward "what to write or respond" stage, so forgive me when I put my foot in my mouth.

Finally, if you know me, then you’ll love this:  Instagram limits posting length and hashtags.  No novel-length postings there!  LOL – you can find me easily, or check out the linked feed on my website for a quick peek.  

See ya on Insta!

PSA:  All photography/imagery posted is mine and copyrighted unless otherwise credited.  Please credit on reposts or contact me for usage rights.  I will give credit to any image used that is not my own or in the public domain, and will remove any image I've used at the request of the image owner.  Don't be a jerk.  Respect and give credit to the creators/copyright owners.

Serendipity and the Christmas Eve Panic Attack

It's Christmas afternoon, so . . . Merry Christmas!  I grew up under several religious influences--and even hated Christmas at one point in my life--so if you don't celebrate Christmas, please accept this as hope that you're having a nice day, and be forewarned that this is a personal, faith-based post.

I don't discuss my spirituality much.  I love to talk about theology, and will, often.  If you know me or have read my books, you know (or can tell) that the subject fascinates me.  I don't treat religion as mythology, but I'll often intertwine the two in discussion and in writing.

Even as a kid, I've always felt like God has me in His hands.  Religion has never mattered in that regard.  Whether I went to the Kingdom Hall, a church, or was casting spells under the full moon, I never wavered from that trust and prayed for God to carry me when I couldn't carry myself.  Well, maybe I can't say never.  I mean, we all waver at some point in our lives.  But, if I did, I found my way back. 

Yesterday, during a panic attack, I realized that I lost my way a bit somewhere.

A lot's been changing and stressing my life recently.  My anxiety used to be constant.  It nearly kept me housebound.  But acute panic attacks were rare.  Last year, a major stressor was relieved.  My anxiety was still there, but I finally had a baseline.  I'd have a few attacks on occasion or generalized anxiety, but nothing like the major panic attacks I've had in the past few weeks.

I don't really know what happens.  Yesterday, we went to church and I started feeling not so great when I saw how many people were there, all the people directing traffic, the fact that they needed people to direct traffic . . . and then my right leg stopped working as I tried to walk into the front vestibule and I stumbled.  No one tried to help.  I caught myself on my cane and got my balance.  I know it's beyond my control, but I felt stupid and was embarrassed.  So, still having some trouble, I forced myself to keep moving forward, relying on the cane more to make up for my leg.

Tim had gotten a bit ahead of me.  Just as I was about to catch up, I planted the cane and was in mid-step with the right leg (my bad MS leg) when a guy shouted a greeting from the right to a woman on the left and they approach each other right in the space I was about to enter and cut me off.  That's when I lost it.  I stumbled again because I had to stop suddenly and that really messes with me physically.  Neither even acknowledged I was there or that I was about to fall.  I again righted myself, forced myself to keep moving, and stepped around the woman and then . . . all I could see was Tim being swallowed by a crowd of people closing in and a room of windows shining like a beacon.

Next thing I know, I'm in that room, shedding my coat, shaking and on the verge of hysterical tears, holding my breath to keep a chest heaving sob from escaping.  Tim didn't know what was happening and it's really hard, in the moment, to explain something that's just happening.  But - I constantly need to evaluate myself and my situations for my doctors.  I'm used to evaluating things in the moment and being aware of what is happening to my body.  Somehow, while freaking out, I managed to explain, and as the tears spilled over, I sucked down a big breath and a kid came into the room.  I turned away and tucked my face down.  A woman walked in, saw me, and walked out.  The kid lingered.  I remember digging for my pills, pausing to remember which one to take, and taking one.  And then I remember standing there, willing myself to go into the sanctuary - into a room packed full of people and noise.  I couldn't.  I couldn't do it.

I tried.  A few times.  The first time, I knew the medicine was working yet and I barely made it into the hall.  I told Tim to go on in and I returned to the bright room, where I sat by the windows and stared up at the open blue sky and the naked the trees to ignore the parking lots full of cars below.  A bit later, I went into the sanctuary.  I wasn't entirely ok, so I kind of remember searching the room for Tim and his parents, and the ushers asking if I needed help finding a seat.  I shook my head in a daze and stared at the backs of all these heads.  Everyone looked the same.  A guy on stage was talking about finding God and I decided to find a seat.  I sat.  I got comfortable.  I thought, "I can do this."

Something happened.  Everyone was standing.  Everyone started recited something. I couldn't do it.  I don't know how, but I was in the hallway in a chair and then I was talking with an old friend from work.  And then I moved to the lobby - with large windows - and I stared at the carpet.

The men across from me were talking about another man's journey to finding the Holy Spirit.  It caught my attention and I listened to them for a bit.  I don't think I've ever heard guys talk so earnestly like that.  It got me thinking about my journey.  And that's how I realized that my relationship with God had changed - or, at least, how I viewed it. 

As far as the panic attack goes, the meds only took the edge off.  I had to take another one later, and then some additional meds when we got home to help with pain and muscle cramps.  Soon, Tim and his dad came out to check on me.  I tried to go in one more time, but couldn't, and then people began arriving for the next service so I had to move.  I went down a quiet hall, more people and more noise encroached, so I moved farther down until I was outside. 

All the trees were filled with crows.  They were cawing so loudly that their cries echoed off the buildings, off the air itself, and built into a cacophony that rose and fell like a discordant orchestra.  I recorded it.  It was beautiful.  I buttoned my coat and stood there, watching them - hundreds or thousands of these gorgeous black birds.  They brought me back to peace, to my center.  I smiled.  I was calm.  I was with the birds and the trees, the blue sky and cold winter air.  No people.  No cars.  No walls.  No panic.

For five minutes or so. 

I'm not one to stand outside in the cold.  But that was an amazing moment.  I felt like God had sent it to me.  I love crows.  They are smart and lovely.  They are heavy but glide effortlessly  They always capture my attention.  I want to take pictures of every one I see.  There's one on the photograph I used for the family tree in my series.

In the between time, however, while I was still in the lobby, staring at the carpet, I was pondering my relationship with God.  Even then, I knew He had me in His hands, and I repeated that in my head, when my pulse started to race again (and again . . . and again).  I thought about my books.  And that's where the shift had entered.  I use a Christian-based mythology in my Children of the Morning Star series, and my biggest worry has been how readers will react to it.  I didn't want to sound preachy or disrespectful.  I've had readers who love it, some who hate it, and others who simply see it as part of the story.

But there are other references in the book that only certain people will pick up.  I use the symbolism of circles, nature, and other influences of Wiccan or Gnostic origin, and ancient mythologies.  The circles in the forest, the grand silver maple, the colors, the numbers, the dates - there's so much to it that spirituality, in general, flows through the books. 

I've gotten so lost in working on them, marketing them, making connections, planning, etc, etc, etc, that I didn't realize I was worrying more and more about the Christian element turning people away.  So I took a moment yesterday for clarity.  Why did I see that as a bad thing?  Because I didn't want people thinking it was an in-your-face religious book.  It's not.  And I know why that bothers me.  Coming from such a diverse religious background, I'm not fond of that approach in Christianity.  But that shouldn't impact my relationship with God.  And I shouldn't be ashamed of the mythology I created for my fictional story or my relationship with God.  If it turns readers off, then it's the same as me not reading something I don't like.  It's that's simple.  Strip away everything but the issue and it comes down to the fact that reading is subjective.  Not everyone's going to love everything.

So I won't worry about that anymore.  Even most of the folks that weren't fond of my mythos still loved the story enough to finish the book.  I'm biased, I know:  it's a good story.  BUT - not everyone is going to like it.  Not everyone will finish it.  I know that for a fact.  And that's ok.  I respect my readers.  They get to choose if they like it or not.  Somehow I got caught up in my own issues, insecurities, and worries.  I've put so much of myself in that book, including my relationship with God, that releasing it opened up my vulnerabilities and I didn't realize it.  And then it began affecting not how I saw religion, but how I saw spirituality.  I have never been religious.  But I am very spiritual. 

So, I trust that God has me in His hands.  He carries me more these days than He has before.  He is with me.  And I'm not ashamed of any of that.  I love Him.  I am thankful to Him, for Him, for His love and His care.  For sending crows to make me smile. Perhaps it was serendipitous that it took a panic attack in church, on Christmas Eve, to open my eyes.  But I see it now.  He is my guiding force.

So, with that . . . Happy Birthday Lord and Merry Christmas to All.

Rising Up to Fight

My life is an odd balance of good and bad.  I never thought I was too superstitious, but when "the good" came in heaping piles earlier this year, I knew something was coming.  I wasn't wrong.  The last three weeks have been some of the roughest of my life.

I am, unquestionably, lucky and blessed in most aspects of life, which allows me to say (and mean) that I live happily and have a good life.  It pretty much goes wrong with my body and health.  I am up at 0330 writing this, after all.

Over all the years I used this blog as a platform to keep family and friends updated, I guarantee I've never listed more than half of what is wrong with me.  So, I won't start now.  But if you've followed me, then you know the biggies:  Multiple Sclerosis, Breast Cancer, Valvular Heart Disease, and now Ehlers-Danlos Syndrome (EDS).

EDS is a rare genetic disorder that causes a defect in how the body makes (or doesn't make) collagen.  It's a connective tissue disorder.  There are 13 subgroups with a lot of overlap between them.  Some are diagnosed by symptoms and some by genetic testing.  I am pending genetic testing, but I've been confirmed for Hypermobility Ehlers-Danlos Syndrome (hEDS) and I have visual and historical symptoms for Vascular EDS (vEDS).  Vascular EDS has a high accuracy rating on genetic testing, so that diagnosis isn't confirmed yet.

I've been given so much to read, it's overwhelming.  I think, if I was healthy, it might not seem like such a blow, but given everything else, this is hard.  To put it into perspective, when I learned about Breast Cancer, I was home alone.  I called my neighbor, who was like a sister, and she rushed over with shoulders to cry on.  And then we fought.  And we won.  I went at the doctors like, "Let's do this!  Cure me!"  I can't say I didn't cry in the years that followed, but cancer didn't break me.  I beat it.

Multiple Sclerosis didn't break me.  The uncertainty of my future almost did, but I learned how to reframe my thinking and planning, and that made a huge difference.  I've also been in weekly therapy for years to help manage my symptoms.  After I first learned I had MS, I went home, put headphones in, and walked around my garden for a while.  I'd stop and look out over the field, the back of the house, or just stare blankly at the sky.  I was mourning the life I thought I'd have, which I had to do to accept my new life.  I can't win against MS, but I can actively fight it.  So I do.

EDS . . . wow.  I just - I don't know where to start.  I've known for the last two years that the doctors were missing something, and that's not a slight against how good they are.  I have great doctors.  It's a testament to how rare this disorder is.  One of my doctors says I'm his "most monitored patient" and he usually sees people twice my age (seriously).  So, of course, the first question everyone asks me is, "How did they miss this your whole life?"  Because, yes, I was born with this.  It's a genetic disorder.  Whether I inherited it from one of my parents, both of them, or my genes mutated when I was a fetus, I was born with it and have unknowingly been adapting to it all my life.

EDS answers questions about my life that I didn't even know I had.  It's taught me that things I thought were normal about my body are totally not.  And that some seemingly benign things, like having super soft skin, are actually symptoms.

So the next question is why did they find it now?  I am stubborn with my pain levels.  I live in constant pain.  I don't want to depend on controlled substances to the point of resistance or dependency, so I will push it until I can't take it anymore.  Several of my providers think I'm too hard on myself in that regard, and (responsibly) advise that I treat my pain more than I do.  That said, I've been suffering agonizing joint pain for most of this year.  It started in my left elbow and then my right knee suddenly got bad, fast.  At times, I couldn't put weight on it.  Then I woke up a few mornings in a row unable to move my right shoulder without manually manipulating it first.

When I woke up and couldn't move my right shoulder or stand up, I knew I'd pushed it too far.  I got in with Rheumatology and was lucky enough to get a doctor who knew what I had by just pressing on my knuckle.  There was no collagen between the bones.  Also luckily, my health care system has one of three geneticists in the state and she's an EDS expert.  They got me in with her the next day.  Unfortunately, having a connective tissue disorder with a hypermobility aspect and  MS is going make "things very hard" for me.  EDS is not understood well, not many doctors know anything about it, and there's not really anything you can do for it other than preventative maintenance like physical therapy or massage therapy, and pain management.

I'm sure you're asking, "Lucky?"  Well, yeah.  I have answers now.  I've been poked and prodded and tested as  a medical mystery for so long, it's my normal.  My doctors have answers.

My friends and family have questions.  Too many questions.  It's been overwhelming to get a diagnosis like this with the expectation that I read up on it so I can have an educated conversation with the Geneticist after my test results are back, to process what I'm reading (because it's not great), and to field a thousand questions coming from every angle.  I've been filtering info out to family privately and on Facebook as I'm feeling up to it.  I have to be ready to tackle EDS to talk about it and I'm still not sure that this isn't the one that breaks me.  I certainly feel broken.

As with any diagnosis, in the beginning everyone tries to cram hope and sunshine down your throat.  It was the same with MS.  From personal experience, that's a shitty thing to do.  Giving people hope isn't a bad thing, but the way it's done dismisses the patient's fears and isn't realistic.  I've been through it with MS.  I mean no disrespect, but I don't need unrealistic hope.  I see through the bullshit.  I live in my body.  I'm not a pessimist.  To me, the glass isn't half full or half empty - it can be refilled.

EDS adds the certainty that MS lacks.  Those two together are formidable.  I am looking at a future of debilitating pain, physical disability, worsening mobility, and no real way to manage any of it.  That makes researching this so much worse.  I try to stick with facts, but it's good to get an idea of what EDS patients live with and their stories are heartbreaking.  At this point, I'd like to acknowledge that this is long and that you have no idea how many times I've had to stop typing because I can't deal with this.  Taking even just a second to take in a breath and close my eyes, helps.  Like I can lose this reality in that brief dark, respite.

So that's hEDS is a very small nutshell.  There's so much too it.  It's connective tissue.  It's your skin, your tendons, your organs, everything in the soft or connective tissues.  I can literally say that I'm literally falling apart at the seams.  It's everything.

And that doesn't include the fact that I glossed over vEDS.  It's not just me saying that I likely have it.  It's my cardiac history, it's my doctors who know about vEDS asking about my heart in that gentle voice that doctors use for delicate issues, it's knowing that I have leaky valves - the valves in the heart that are made of connective tissue.  The one, big complication of vEDS (and rarely in hEDS) is that the aortic valve will "slip" and cause massive internal blood loss that leads to a fatal heart attack.  Until the geneticist saw the vascular signs, she had started talking about how EDS generally isn't fatal and that hEDS will be minor compared to MS.  That speech disappeared quickly and life expectancy wasn't brought up again.

The median life expectancy for vEDS is 48.  When MS is the cause of cardiac issues, the median life expectancy is 45.  One of those two things is responsible for what's going on with my heart.  If that is all true, I have 3-6 years, maybe.  And it'll probably happen fast.  I've taken many breaks trying to get through this paragraph.  I can't stop the tears.  I thought I was mourning my life with MS?  Wow.

I don't put any of this stuff out there for sympathy or pity.  I'm an odd duck with weird things that people don't understand.  I try to help them understand.  I try to answer questions in one fell swoop instead of repeating myself over and over - that's so stressful.  I try to find others like me that I can learn from.  I want to share my experiences.  I suppose like any of us, I want to know that my life will have mattered after I'm gone.  And facing mortality, again in a matter of three years, is a big deal.

I don't know if it ever really occurred to me that I could've died fighting cancer, but I do know that I prepared for the possibility on the surface.  I got powers of attorney, a living will, and a DNR order.  I made sure that people knew what to do if something went wrong in surgery.  I asked my best friend to help my husband unload my geeky collections when he was ready.

But now?  This is so different.  This is looking at unread books and not knowing if I'll ever read them.  It's wanting to research Batman because there are gaps that I want to fill.  It's hoping I can go back to Florida one more time before I die.  It's hoping I get to finish writing my books so I don't leave my readers hanging.  It's truly getting my affairs in my order.  Reinstating my DNR.  Talking with my husband about what I need to do now to make it easier on him when I'm not here anymore.  I can't scratch the surface of this on a deeper level...my husband, my daughter, my granddaughter - I just can't face that yet.  So yes, right now, it might seem superficial, but don't judge until you're sitting in my shoes - which I don't like to wear because they make it harder to walk.

I know.  It's easy to sit on the other side and say that I don't know what's going to happen.  I don't.  I could die in a car crash on the way to one of my multiple doctor appointments tomorrow (which actually makes a stronger case for having your shit together to help your loved ones when you pass).  I could defeat the odds and live to 92.  Most of the people in my family live ridiculously long lives and are tough.  But I'm only human, with human fears and emotions, and I can only take so much in stride before I break.  I don't like to play what ifs.  It's actually something I bring out in my writing.  My characters will say that what ifs mean nothing and waste energy.  For the most part, that's true.  But there is a time and a place where using them to plan is necessary, and this is the time.

Maybe those tests will show I don't have vEDS.  Honestly?  I'm not going to believe it.  There's a 1-2% error margin.  That should be a relief if it comes back negative.  But I know what symptoms I show and my history.  Even if that test comes back negative, it is possible to overlap with hEDS, which I DO HAVE.  The good news there is that if we can manage it, I can add a decade or two back (from a cardiac standpoint), and the aortic valve slippage is possible, but rare with hEDS.  Which brings me back to pain and disability and a dark hole.  Do I want to live longer in agony?  Or die sooner?  It doesn't really matter what I want.  I'm not in control of that.

I control whether I fight or not.  And I fight.  Pain or agony be damned.  I'm a survivor and that's because I fight.  Death will win, eventually.  None of us can win that fight.  But we can fend him off.  That's our choice.

Even in a dark hole, I will eventually find light.