Wednesday, August 8, 2018

What Kind of Idiot?




I just want to tell you that things have not been going as planned lately. It seems that the cosmos has things in store for me that I wouldn't have chosen for myself.

Let me reassure you that I don't have blue hair (currently) but I do have a hair story.  Silly me thought that I could go and pick up my prescriptions before getting my hair colored the other day.  Plus the appointment was at 1:30.  Dicey time for me.  Approaching the daily melt down when I need to be near my bed. I was sitting in the chair, hair full of dye when it descended:  The Walking Dead Wipeout.   I ended up begging the receptionist to go and rip my hairdresser back from her lunch break to wash that wicked stuff out of my hair.  No cut.  No blow-dry. Said yes to the purchase of yet-another no-frizz product.  Like an idiot, I emptied the contents of my wallet, gave it to her, and walked out of that salon.

Idiot.

I have a plant story too.  I have been fascinated with forest bathing and wanted to bring some more plants into my home.   Now plants are about the only thing you can't order online, although I have ordered live bamboo sticks from Amazon.  (And in retrospect I guess I could have called 1-800-FLOWERS and sent a plant to myself.)  But instead I thought, "What kind of idiot can't drive to the adjacent town and go into a green house, pick out a plant and leave?"


What kind of idiot?

 Guess.

I was such a mess in that hot, humid greenhouse I wanted to die. I snatched up a plant so quickly, I don't know its name, whether it needs sun or shade, or how much to water it.  I just know it's green and will exude all sorts of good things into my air.

And I have a tree story too. . .

And a pool story. . .

OH, how is it that I have to readjust my life once again?  Is it truly possible that I can't even do the little things anymore?


Someone bring me back from this!







Friday, July 20, 2018

The Answer is Blowing in the Wind




In contrast to my last post, I've had a glorious few days.  (We won't talk about the absolute misery which descended in between and caused me to swear that I would not make any more social engagements because I would never again gather the strength to leave the house as long as I am lucky enough to live.  I've gotten over that.)

The point is, that I believe I have discovered a few things.

In my book when I speak about Buddhist philosophy, I mention that part of its very core is the acceptance that life is like the wind and can blow us from here to there at any time.

How true.  How true.

In fact, I think I've learned that my life can be directly connected to the weather.  Not quite a tenet of Buddha, but maybe a universal truth for me.  When I first became ill with Sjogren's, one of the most unsettling signs was that my exposed skin would turn bright red within 30 seconds of being in the sun.  Not only that, but exposure to the sun - even when swaddled in SPF clothing - would make me feel ill and more fatigued.  That seems to have changed a bit.   I went swimming yesterday without my long-sleeved bathing shirt and sat in the late afternoon sun for a good 30 minutes without redness or rash.  I'll take it!

On flip side. . .

My body doesn't seem to be able to handle the absolute heat anymore. I was outside in the humidity at a graduation party last weekend and sat - like a fool - with sweat dripping from the rim of my head; using the fancy cocktail napkins to wipe my brow and causing my forehead to turn a bright Penn State blue without my knowledge. (Oh, how I wished that the wind had come along and blown me somewhere else at that moment!) The only way I finally cooled down was in the cold shower after my return home, and  I was completely wiped out for two days following.

And then the wind blew in these last three days of absolutely spectacular weather, accompanied by some other postive happenings in my life.   I began a regimen of prednisone which rids me of my joint and muscle pain; I had the chance to spend time with different friends both in the restorative goodness of  the forest and in a swimming pool; I have prayed alone in the contemplative quiet of an empty gothic church; taken a revitalizing nap with acupuncture needles in my body, and I have switched to a lovely pair of bamboo pajamas. 

Is it any wonder I've decided that life for me is good once again?

The wind, my friends.

The answer to my life just may be blowin' in the wind.


Wednesday, July 11, 2018

But I Did Everything Right!

UGH!!!

I did everything right this morning.

Rose around 8:30 a.m., downed my first two morning medications, sat in the shade in my backyard sipping coffee, said my morning prayers, and then meditated with moist compresses on my eyes.  Why, I even stood guard and prevented the dog from pooping in the yard next door!

I returned back inside and - deciding against my usual carb-heavy breakfast - chose to eat fruit instead.  I then took my other six morning meds, started my essential oil diffuser, soaked in a tepid bath filled with epsom salts and essential oils with spa music playing, drank my low-salt-no-sugar-vitamin-and-electrolyte-water, and stood up.

UGH!

Dizzy.  Nauseous.  Disgusted.

What happened to the benefits of being around trees?  The sheer goodness of summer nectarines and strawberries?  The detox of epsom salts?  The good karma connected with the dog poop?

All of it down the drain with the bath water.

Could it have been the second cup of coffee consumed while reveling in the fresh morning air?  The fact that my poor gastritis-ridden stomach cannot handle the ingestion of eight morning meds with just fruit?  Could it be that I truly need my morning bagel for medicinal purposes?

I well remember those days long ago; days when, after working long frantic hours, I would long for a day in bed.  Now I can't do enough to get out of it.

There's always tomorrow I suppose. . .



Tuesday, June 5, 2018

Gettin' Cairn Away





Can't help myself; I'm loving these things!

Perhaps it's an attempt to make order out of a world I can't control.  arrange the capricious.  manage the all-too-fickle and volatile aspects of my life.

Identity theft has struck again and I'm longing for something.

beauty.  simplicity.  contentment.

How does one make a beautiful garden when she is practically confined to her bed?    how do you hear a temple bell in a gentle breeze?  enjoy the gentle light of a candle at night?

Do you know that a study in Japan found that 30 minutes of "forest bathing" had the same effect on subjects as did 30 minutes of meditation?  heart rate slowed.  blood pressure dropped.  contentment increased.  just because they sat in the woods for a half-hour.  What a symbiotic relationship we have with nature!

Place you arms around a tree or bush, but don't touch it.  Leave them about six inches from it's trunk or leaves.  Feel the energy it emits.  This is the meaning behind a true tree hugger.

Yes, I may be getting cairn away.  All because my neighbor recently hung a beautiful sounding wind chime which I hear from my bedroom window while I'm napping or falling asleep at night.

Just cairn away. . .






Tuesday, May 22, 2018

Gluten Free Gluttony

We've all been there.


We've all done it before.



The scene is a grocery store.  A gigantic one.  Huge, in fact.

It is 3:20 in the afternoon and you have yet to have lunch.  That little bowl of Rice Chex consumed at 9:30 a.m. just isn't doing it for you any longer.  You need to eat.

And then you remember that the very reason you ate those Rice Chex is that you have made the decision to try a gluten-free diet.   After hearing so much testimony from others about how it will help your joint pain, you've decided to give it a try.  Plus, you're meeting a woman from a Sjogren's forum for lunch two days from now and she has chosen the restaurant for its fine selection of salads because she - like everyone else these days - is gluten free.

And you?   A best-selling author, recent world traveler, and aspiring advocate for autoimmunity? You need to join the growing trend.  But you hate salads.

That aside, you enter the humongous grocery store, contemplating seating yourself in one of those motorized-wheelchair-like-carts and know that you just cannot do it.  The world-traveling-author-and-guest-on-the-Dr.-Oz-show is too scared to operate it.  Plus, the reason you haven't had lunch is that you just had your hair done and you want to pretend - for just a few minutes, mind you - that you are one of those people who have their sh*t together. And no one with hair like yours has ever placed herself behind the handlebars of a motorized cart.  You swish you head around from side to side, thinking that you look like a million bucks.

First to the fish counter.  You discover that God did not create any new species of fish since you last checked.  Your entire body revolts at the thought of another evening of salmon which you will play with on your plate.  You choose scallops instead.  A member of the mollusk family.  They may just provide some entertainment by rolling around on your plate, unless you decide to be brave and eat one.

You move slyly over to the prepared foods.  Ah, already-grilled veggies.  Perfect.  They too, make for good playthings on a dinner plate.  And then you see it.  The beloved macaroni and cheese is calling to you.  But alas, you are now officially gluten free.  Perhaps dairy free too for all you know, but we'll work on that tomorrow after you finish the chunks of provolone in your home fridge.  So you appropriately choose a chicken, black bean, and brown rice cilantro bowl to bring home for your lunch.

Let's go.

But you have to pass the fresh bakery department on the way out of the store.  Bread.  The staff of life.  But perhaps this store makes gluten-free bread!  It's worth an inquiry!  "No," says the beleaguered bakery worker while bringing a fresh-baked loaf of bread out of the store's brick oven, "You'd have to go to aisle 5B where the gluten-free bread is in with the frozen food."   Aisle 5B?  This store is so friggin big the aisle numbers have to be further delineated by A, B, and Cs?  Remember, you chose not to hop into that motorized shopping cart. . .

Knowing that you have lost the battle, you swing you hair around a few more times and pick up a loaf of the healthiest-sprouted-softest-lovliest-best-smelling-heart-warming-wheat bread you can find, put it in your cart, and quickly make it through the 10-items-or-less checkout line and to your car.

You car.  Where you place that loaf on the passenger seat, quickly open the wrapper, and continue to eat it and all of its gluteny goodness all the way home from the grocery store.

The only problem that remains is to make the loaf look like it was not sold in its entirety.  In fact, some stores sell half-loafs and so you rearrange the remaining bread to look exactly like the other half had never even seen the inside of that wrapper.  What?  Is your husband going to weigh the bread in your kitchen?  Sure, he might think you were out of your mind to pay a whopping five dollars for a half-loaf of bread, but he knows that you're crazy like that sometimes.  Especially when your hair looks so damn good.

And so he enters the house after a long day of work and his laser eyes zero in on the very thing you don't want him to see, and he queries.  . ..

"Is this bread gluten free?"


Tuesday, March 13, 2018

The Unpredictable Puncturist



I don't remember if I've told you, but my right shoulder has been hurting for over a year now.  And so after numerous doctor's visits, cortisone shots, physical therapy appointments, reikki sessions, deep tissue massages, and chakra balancings, I returned to acupuncture.

Only I was fooled.

On my last round of acupuncture, my puncturist and I had gotten to a point where a session was almost predictable.  I would inform him I had neuropathy in my feet.  He would query me about my bowel movements.  And then he would insert needles into my head and my ears.  After a few sessions he decided that he needed to treat me more systemically and so he started to put those needles into my (cringe) belly button.

And so the morning of my first follow-up session I got myself ready - or so I thought.  I polished my ears; inside and out.  I made sure my belly button was squeaky clean. (No "smelly" button for me.) My fictitious answers to his all-too-private questions were well memorized. (Yes, exactly in the shape of a banana!  How'd you guess?)  By the time I reached his office, I believed I was all set.

Only my puncturist didn't ask me those questions.

I informed him that my shoulder was "killing me."  And so he went right to work.  As logic would have it, he began pushing on my lower back and stomach.  "Where does it hurt more?  Here?  Or here?"  And then he had me lie down and began to wiggle and roll my seriously-unshaven legs and proceeded to put needles at the juncture of two of my un-pedicured toes, one hand, and my stomach.

Of course!

Reminded me somewhat of this post from years ago!  




Tuesday, March 6, 2018

Woo Hoo! The Sjogren's Syndrome Foundation Is Promoting My Book




Patience (or more likely, hesitancy) pays off!

I have always known that my book would would benefit my fellow Sjogren's sufferers, and the most likely way to reach them was through the Sjogren's Syndrome Foundation.  I had attended their National Patient Conference last spring and know that they do good work and provide patients with only the best information.   And although I had sent a copy of the book to them very early on, I just didn't seem to be able to break through and find someone who had the time to read it and respond to it.

Well here we are, almost seven months later, and its happened.  The Sjogren's Syndrome Foundation will promote and sell my book on their website!

Oh why did I ever doubt?  I knew I loved them!