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!



Tuesday, April 25, 2017

Did I Beat the World's Record?


I stopped by the pharmacy today on my way home from the dentist (and on the way to the therapist, I might add) and picked up a few items.  I was silently trying to beat the world's record for medication refills and cannot, for the life of me, determine if I did.  Those people who work behind the counter are so professional, they don't bat an eye when someone comes in and picks up eleven (YES 11!) different medications for the same person.

Each was polite. . . for of course they all know me.  "Oh, hello Mrs. Spin, how are you today?  And how are the girls?"  And it was a team effort to gather them all together and collect the $2.02 which was owed.  (I thank my lucky stars for my husband's insurance.)  But no one told me if I'm going to make it into the Guiness Book of World Records.

If not, there's always next month.   I didn't even refill them all. . .




Friday, April 21, 2017

Why Do They Let Me Look at Patient Portals?



As I sit dangling my feet off the edge of the table in my rheumatologist's examining room, I can't help notice the notice on the wall which reads, "Five Reasons You Should Not Google Your Symptoms before Going to the Doctor."  All well and good.  I get it.  With all one can find out there on the internet these days, you may end up thinking that you have some terrible disease and worry yourself half out of your wits.  (And if you're anything like me, the first half of your wits may have disappeared a long time ago.)

But what about patient portals?  The information found there is real stuff - stuff pertaining to you - like results of your blood tests, biopsies, and things. Do not let me look at this, people!  And so I present to you, "Five Reasons I Should Not Look at Patient Portal Results."

  • If you take 20 vials of blood from me at my first visit, I may not have regained all of that volume back by the time the results come in, causing me to be even more half-witted than I normally am.
  • I then have to worry about why you felt the need to run each of those tests in the first place.  My personal favorite is the Diluted Russel's Viper Venom Test.  Who was Russel?  And why did he have a viper?  And just why, doctor dear, do you think I have anything in common with Russel's viper's venom?  I never reported a snake bite to you.  And if you gave to me, thank heavens you diluted it before you did!
  • At least the snake charmer test was in the normal range.  What about those tests that aren't?  Holy smokes!  First high, then low.  All these things that I don't know!  Could so much really be going wrong in my body?
  • You have now forced me to become an amateur pathologist, as I'm sure you don't have those results of my lip biopsy correct.
and. . .

  • I now feel both validated and violated.  Validated, because I knew every inch of my skin, bones, and muscles were hurting.  And violated, because I didn't want to collect any other autoimmune diseases.

Wednesday, April 12, 2017

A Neighborly Thing to Do

Did you ever have to borrow a cup of wine from your neighbor?

First on one side. . .

Then the other. .  .

I'm not sure, but it's 6:33 pm and I just picked up my box of wine and discovered that its very light tonight.   I wonder who consumed its contents?   I am now quite certain that before the sun sets I will be forced to take that plastic lining out of the box and milk it like its a cow's udder.  And don't you think I'll be getting any help from Drip Dry stopping by the liquor store on his way home from work because he's out of state tonight on a business trip.

Speaking of states, I need to tell you that I envy those of you who live in certain of these United States where you can purchase wine at the gas station.  Yup, you and your wine glass could pull up to the pump and say to the attendant, "Fill 'em both up!"  Oh, I forgot; you people who are not from New Jersey have to get out of your car and pump your own gas.  Trade offs, I tell you, trade offs.. .

What about those states that sell wine in the pharmacy?   Perfect place for it to be.  Medicine.  It's pure medicine.  Tell me, is it available in prescription form at the drive thru window?

And as for the convenience store?  Well, those people would see a lot more of me if a stray bottle of Pinot Grigio were to replace a carton of milk now and again.   For after all, it's mothers' milk; is it not?  Who needs lottery tickets and cheese doodles?  

I NEED WINE!!!

Monday, April 10, 2017

A Chakralate Galactivation Extravanza

I am not quite sure I will ever get this experience out of my mind.

I knew that I was running the risk of being a bit OUT THERE when I signed up to go to a raw chocolate, essential oil, Tibetan singing bowl, chakra cleanse given by a man who has dubbed himself "Dr. Love."  (The name has been changed to protect the insane.  See!   Just like I do with myself!!!)

How to explain?

I sat on a chair while a self-taught guru with his band of angels on a magical mystery tour of love, dished out flavored raw chocolate and rubbed an essential oil on my wrists before one of the angels stood in front of me and struck a Tibetan singing bowl whose note corresponds to one of the seven chakras in my body.  Dr. Love started with the Root Chakra and worked his way all the way up to the Crown Chakra, while we - the participants - worked on areas of our lives where we have problems due to the fact that a particular chakra may be blocked or out of balance.  Hence the cleanse part.

I suppose that anyone who has stuck out a yoga class longer than I knows that the both the Hindu and Buddhist traditions believe that there are seven major chakras in the body.  Each is envisioned as a swirling wheel within the core of your body and stores a different kind of energy.  This energy, called “prana”, keeps us vibrant, healthy, and alive.  Conversely, blocked chakras are believed to create illness.  

I have to admit that I was a wee bit worried when I tasted the first "chakralate" (I'm coining that phrase here for the first time - no charge for the intellectual properties.)  What if it had been laced with some sort of hallucinogenic or just plain old made in Colorado?  That's what I do best, you know; panic about irrational things.  But then I realized that it was an event sponsored by our local hospital and that kind of stuff really wouldn't fly with the board of directors.

Panic over.

Don't get me wrong, the sound those bowls emit is awesome.  Each bowl, when struck with a mallet, will resonate for at least 45 seconds.  You can almost breathe in its vibration.  Vibrational healing is nothing new.  It stems from very ancient traditions.  Placing a whorling bowl in or around your body, can change the very energy within you.  I've been to singing bowl meditations before, but they have never been so. . . so. . . galactivating before.

I know this because I got caught up in the whole magical-mystery-chakralate-bowl-singing-essential-extravaganza-tour-of-love and purchased a bowl for my own use.   It's not like I purchased it, really; it was more like an adoption.

Yeah, that's it!  I adopted a bowl that needed a good home.  It found me; and I found it.

And then I headed home and lied to Drip Dry about exactly how much the adoption fee was.

It's an "E" bowl.  The "E" note, in Dr. Love's world, corresponds to my Root Chakra.  It should make me safe, strong, supported, and help with my fatigue.  Who could argue with that?  I think I need to name my bowl but am stumped as to what to call it; for nothing is quite resonating with me just yet.  Perhaps I need to get to know it a little better.

I introduced it to the other adoptees in the house.  The cat was mildly interested in the sound it emitted.  The dog, on the other hand, was quite indifferent the second she realized that it didn't contain potato chips.

Perhaps that chocolate was laced after all.  I wonder when the effects will begin to wear off. . . .


Monday, April 3, 2017

Walking in Circles

Could someone tell me how me - A Mom on SPIN - just found out about this walking in circles thing?   

Let's face it. . .  my mind has been running, spinning, and rotating in an eternal circle ever since my oldest turned that magical thirteen. . .  and no one bothered to tell me that I could take it as a form of meditation?

Ever since a brief walk in a labyrinth the other day, I've been all about circles.  I want to walk them, pray them, meditate within them.

Circles:  the eternal quest for knowledge, the beginning with no end, the symbol for unity and completion.

And I thought a Zen garden was cool?