Monday, August 14, 2017

Lattes and Authorhood

I'm thinking that I ought to gather my devices and begin to hang out in coffee shops instead of the corner of my living room couch, because that's what authors do.  Right?

And I'm preparing answers in my mind for all of the questions that will be posed during the myriad of author interviews which will follow in the wake of publishing Drying My Tears.  Here are just a few I've come up with:

  • What do your fans mean to you?  If I actually have fans, it means that they are currently one of the 14 people who have read my book and so I love them!
  • When you're not writing, how do you spend your time?  The answer to this one is easy: SLEEPING!
  • How do you approach cover design?  I approach a cover by designing anything that is free.
  • Can you describe what your desk looks like?  It's soft and plushy.  It has pillows that match.  It's a chair and a desk all in one.  Why it's my living room couch!
  • Do you encounter obstacles while trying to write?  Well, we could start by talking about "Drain Clog" (a.k.a. brain fog) and then move on to feeling "Sabulous" (all dried out) which has resulted in corneal erosions and vision disturbances.  No discussion of obstacles would be complete without mention of my ever-present fatigue, including the almost-daily "Walking Dead Wipeout".
How am I doing?  Looking forward to the lattes!  Please make mine a Hot Grande Skim, and my name is . . .


Friday, August 11, 2017

Hopkins: Can You Feel Me Now?

I had a return visit to the Sjogren's Center at Johns Hopkins Medical Center earlier this week.  I'm not sure I have ever posted here exactly how much I love this institution, its physicians, and the staff there.

I suppose that there were two enlightening things about my visit and both concerned my peripheral neuropathy.  The first is that a physician stayed overtime for an hour-long nerve conduction study which I was not scheduled for.  (I ask you. . . who in the regular world of medicine would do that?)  The test revealed that there are no signs of large fiber neuropathy as seen by my local physiologist on the same study, and the more interesting thing is that my physician knew enough to know that the NCS done by my local doctor just three months ago had inconsistencies which needed to be explored; for the findings either meant that I could add another diagnosis like vasculitis, or the test results were incorrect.

The previous test results were incorrect.

Yet my small fiber neuropathy remains and seems to have traveled to other parts of my body at great speed.  At my last visit four months ago, I never even mentioned my hands or arms as troublesome spots, yet now they are.  Small fiber neuropathy is often described as having a "stocking and glove" distribution, yet my lack of sensation has - very quickly it appears -  moved to  "gaiters and opera glove" coverage.

Oh, insurance Gods, please approve those IvIG treatments promptly!


Thursday, August 3, 2017

Drying My Tears - This Book Is My Baby!



I have been writing (and rewriting) this book, Drying My Tears, for close to 18 months, and yesterday I hit the PUBLISH button.  In all honesty it was like sending my only child off to college.  (On second thought, I should liken it to sending an only child off to boarding school as a kindergartner, because by the time my daughters went off to college I practically kicked them out of the house )  How could I possibly send my baby out into that big world and leave her open to criticism and reviews?

Drying My Tears recounts the story of my family's encounters with autoimmune diseases  and shares my experiences with complementary medicine.  It also serves as a sort of intimate journal, for in it, I have been very frank about what it is like to live with autoimmunity.  Did I reveal too much of myself?  Too little? A memoir like this is a funny thing.  It's personal by its very nature.

I believe I may be shivering. . .

Buy It at Amazon! 


Thursday, July 13, 2017

It's Time to Speak about Gratitude Again



Pain-wise I had a bad day yesterday.  My guess is that I had over-used my fingers and hands typing in the days leading up to it and they were, hands down, the most painful they have ever been for the length, and width, and breadth of the day.

But the pain led me to be grateful.   A not-so-subtle reminder of all that has been given to me. . . the means to have a computer. . . the ability to type. . . a brain to write. . . insurance to cover pain meds. . . the best doctor ever put on the planet. . . new RA treatments. . .faith that they'll work someday . . .friendships. . . family. .  .

I'm sure I could go on and on.  I only hope I continue to be thankful instead of dwelling on my complaints.

What are you grateful for today?


Monday, July 10, 2017

Hey Jack Kerouac



Well, Jack, it turns out I'm obsessed with you.

I always knew about you; I knew your name and I knew to connect you with the Beat Poets or the Beat Generation, and I think I knew that you had written a book called On the Road, but I had never read it nor really thought about you until I went to a bar in Lowell Massachusetts last weekend (the Worthen House it was called) that you were supposed to have frequented - because my husband, like you, is originally from Lowell and it's no wonder that you went On the Road but I won't utter another derogatory word about the birthplace of those that I love.   My husband had a hot dog in that bar that legend has that you and Edgar Allen Poe called your own - but not at the same time, for you were born long after he and his Annabel Lee were and I hear - that among other things - that you popularized a style of writing called Spontaneous Prose where you used the dash instead of a period. .  . and while the dash is not quite as good as ellipses in my book, I think you just might have something there, for it fits my style - I, too, like to go on and on - flinging the punctuation rules to the wind - until my readers want to throw up their hands in disgust.

Spontaneity.  It's all about spontaneity.

And run-on sentences.

I had a Moscow Mule.

In that bar that you and Edgar Allen Poe frequented.  I had never actually ordered one before but I figured that now (actually, then) was the time because they're all back in style now; copper cups and all, and Drip Dry says he drank them growing up in Lowell, so I figured I would go ahead and order one in your honor: "A Moscow Mule," I said to the waitress when she came to take our drink order - and sure enough, that's what she brought me - and it tasted good but I wish I had ordered the hot dog, for I'm all-but-certain that you ordered many a hot dog at that eatery in your day - and sometimes don't you just crave something has bad and unhealthy as a hot dog?

Can I ask you, Jack, how does one deal with a question mark when writing in Spontaneous Prose?

I'm going to read your book.  I ordered it on Audible so I won't really see all of your dashes - all the better, for I can fill them in in my mind - but the punctuation regarding inquiries will still be a dilemma to me. . .

Monday, July 3, 2017

Surgically Attached to My Bed



Someone please tell me how this happens.

I went to a wedding.  A simple wedding.  I sat in the passenger seat for a considerable amount of time as my husband drove to another state.   We missed the ceremony itself but arrived in time for the reception. I successfully donned shoes which have never once felt comfortable long enough to wear them out of the house or hotel room.  This was a good sign I thought.  A good day.  I downed a couple of Advil, made sure I took my nerve pain meds and was out the door.

I stood during the cocktail hour for a good ten minutes or so before I had to sit.  Drank a few glasses of wine (for we all know that wine is the most effective pain killer of all. . . ) Of course I sat through the dinner itself.   And then I danced.  I danced about five glorious dances with my husband and beautiful daughters.  Oh how I love to dance!  My legs and ankles told me when I hit my limit and I was okay with that.  At least life gave me a chance to dance once more.

We returned to the hotel and I slept the sleep of the dead.  I slept through the rest of my family going downstairs for breakfast the following morning.  I slept for most of the ride back home.  I slept until 10:20 this morning. I've been awake for two hours and now I need to sleep again.

Immediately

Without delay

How, oh how, did I get surgically attached to that bed?


Tuesday, June 27, 2017

Was It Chip? Or Dale?

In case you haven't noticed, I am very adept at complaining about the way in which I wake up each morning.  I may tell you that I have a "skin ache", or that I've ripped my cornea open, or that I can't move my shoulder, or that my tongue is stuck to the roof of my mouth. 

All very logical and worthy complaints.

But I have never yet told you about my most feared of all rude awakenings.  And it happened to me this morning.

This very morning.

One minute my cat was all cozy, sleeping on the bed with me.
And it seemed the next he gave a strange cry and I opened my eyes and saw this:

Oh, I'm so unnerved!

As you may suppose, there weren't quite two chipmunks in that cat's mouth.  No, there was only one which he promptly dropped on the floor of my bedroom the moment he heard my first shriek.  Perhaps he, himself, was alarmed that I did not accept his "present" in the way he intended.

What I do know is that I need to take a moment to thank the Good Lord here are now for three things.
  1. Veggie and her boyfriend were in the house.
  2. The cat did not get a chance to jump up onto my bed with his intended present.
  3. I had ordered shoes from Zappos.
Because for the next hour, Veggie, her boyfriend, and the cat all rustled and tussled around in my bedroom until the chipmunk at long last ended up in the shoe box while the dog and I sat cowering downstairs.