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.


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.


Saturday, May 6, 2017

Management Not Responsible

It doesn't happen often, but every now and then a day comes along when I allow myself to think about the things I have lost.  Actually, "things" is the wrong word; "all" would be better.

Every now and then a day comes along when I allow myself to think about all I have lost.

The truth is that it is currently 2:47 on a Saturday afternoon and I'm in my bed, attempting to catch up on sleep lost for two nights running and I'm feeling sorry for myself.  Very sorry for myself.

And so I sit, with my shoulder in pain; the rest of my body on fire from neuropathy.   And the sign up there tells me that no one is responsible for this:  The Sjogren's.  The arthritis.  The lupus and neuropathy.
Nor is any one responsible for depression or anxiety around here.  This is life as it's dealt, sister.  And you have no tears to cry anyway.

Thursday, May 4, 2017

Will You Still Feed Me?

Remember this post so long ago?

I have been thinking about this for a long time now.  If I have troubles living my day-to-day life now, WHAT THE HECK AM I GOING TO DO WHEN I  GET OLD???,

Can you just imagine me in a nursing home? (Oh, it's going to be a nursing home, people, because Drip Dry - though I love him - is just not the type of guy that would give up his golf game to being a caregiver.  Care taker?  Maybe.  Care giver? No.)  Who would take care of me like I do?  The nurses and aides would be forced to shoot me.  I can see it now. . .

"Oh aide, can you start my humidifier?  And my eye drops, could you put one in each eye?  No, not those prescription ones, the other prescription ones.  Wait, we forgot to scrub my eyelids!  I know we did that this morning, but I need to do it twice a day.  And the goggles, do you have them warmed and ready?  Now set a timer for me.  Never mind Alexa can do that for me.  Alexa, set a timer for 15 minutes.  I hear you sliding out of the room now, missy.  Go on ahead, but don't forget to come back!  I know it's time for my thirteen nightly pills, but I just put these goggles on and my eyelid oil glands will never be right if I take them off now.  The arm splints.  Do you know where I put them?  Get me my prescription toothpaste; I need to brush and then leave it on my teeth for the night so the bacteria don't have a party on the few teeth I have left.  Now can you swab the inside of my mouth?  And my lips, don't forget them.   Do I have water by my side?  The dry mouth spray? Regular eye drops?  Lip balm?  Okay, time for the gel drops.  Remember, once they go in, I can't see another thing.

Wait, which finger, exactly, are you holding up there missy?

Saturday, April 29, 2017

Butt Cheeks and Peripheral Neuropathy

I Wish this Were My Butt

This is a bit of a sensitive subject, for after all, I will be speaking about an area of the body that's a tad taboo in polite circles.  It's also about sensitivity in the literal sense - not the figurative sense.  It's about the act of actually feeling, not feelings.  Oh, let me cut to the chase here and tell you it's about my butt cheeks.

Butt cheeks and peripheral neuropathy.

Peripheral neuropathy is a common complication in those with Sjogren's.  The neuropathy can be of the large nerve fiber type (those surrounded by an insulator called the myelin sheath) and/or of the smaller nerves closest to the skin.  At the present time, I have been diagnosed with small fiber neuropathy and am awaiting another test to see if my large fibers are involved or not.

But, whatever its source, this neuropathy is painful.

It sears.  It burns.  It aches. It stings. 
It crawls.  It zaps.  It zings and pings.  
 It is both ice cold and blazing hot, 
predictable is what it's not!.   

 And, despite the nerve pain medication I take to help alleviate it, it has been disrupting my life in ways I can't even explain to you.  I cannot find a shoe or sock that does not hurt to put on my feet except for UGG boots.  (Not particularly appropriate in the summer months.)  I cannot walk more than a block or two.  This neuropathy affects my sleep, for I wake up during the night with my feet stinging and burning throughout the night.  It is with me 24 hours a day; every day.

And it's creeping up on me.

It started on the bottom of my feet and tips of my toes and stayed that way for a few years.  But within the last nine months, it has begun moving at record speed.  Sensitivity in my toes came first, followed by the entire top of my foot.  My ankles and shins got quirky, sending a strange zapping feeling whenever they were touched.  There are patches on each of my knees that are extremely painful to touch; the same is developing on my elbows.  And now, I fear, on my butt cheeks.

Yes, the outside edges of my butt cheeks.

I can tell you right now, that if I ever attempted to kneel with the sensitivity I feel on my knees I would scream in agony.  Sheer agony.  And now a sneaking burning sensation is starting to appear on my buttocks when I sit.  Can you even imagine?

How on earth will I live life without sitting?    For it has been said that sitting (and drinking wine) is what I do best!