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?


Sunday, April 2, 2017

My First Sjogren's Patient Conference



I had a great weekend at the Sjogren's Syndrome Foundation's National Patient Conference with Ponzi and Veggie.

So many wonderful doctors committed to the cause.  Such a good vibe in the room.  So exciting to meet other Sjogren's patients for the first time!  And absolutely worthwhile to see Veggie and Ponzi become energized and want to work to raise both awareness and funds for the fight against Sjogren's!

And then there were the major scores:
  • I got a chance to introduce myself to the physician I am scheduled to see at Johns Hopkins THIS TUESDAY!
  • I handed a draft manuscript of my book to the CEO of the foundation and asked him to write an endorsement.
  • Veggie walked up to one of the presenters, a premier rheumatologist at U Penn, and told him she was a first year medical school student interested in rheumatology and he invited her to shadow in his clinic so he could teach her what he knows.
Scores on all three fronts!



Monday, March 13, 2017

Not To Be Dramatic . . .but Sometimes Sjögren's Stinks

You must know by now that I usually attempt to find humor in everyday happenings.  Believe it or not I also try to find joy in life.  But there are days when a gal just has to give in and feel sorry for herself.

I was contemplating going on a trip to Portugal and Spain.  It was an eight-day bus tour.  On and off the bus.  Easy as pie.  Luggage and all accommodations taken care of for you.  Breakfast and dinner included.

But then I went away overnight.  One night.  Oh yes, the sink in the hotel was zenchanting - or maybe even zentastical - but sometimes I wonder if it's worth leaving the house when I have to pay the price the next day.

It began when I couldn't wake up in the hotel.  Had one of those All but Surgically Attached to My Bed fatigues going.  Drip Dry and Trigger were up and talking, went downstairs for breakfast, and came back to the room to still find me unconscious.  Ponzi and Veggie came over, we said our goodbyes, and left for the two hour drive home.  Once home, I took a three hour nap and was back in bed for the night by 9:30 pm.  Then I could not, for the life of me, drag my body out of bed this morning for a 9:00 am appointment.

Right now, it's 5:08 pm, I've put Drip Dry's dinner in the oven with an automatic turn off, and I'm going to bed.  For the night, or a nap, I do not know.  All I know is that I cannot live this life in an upright position for one more moment.

How can this be people?

How could I ever dream of taking an eight day trip when I couldn't even make it through a two hour drive and a brewery tour (which, btw, I didn't even take part in) except to drink the blueberry IPA - and blueberries are full of antioxidants, are they not?


Sunday, March 12, 2017

It Was All about the Bathroom, Really.

I won't be the first one to tell you that life has a funny way of turning itself upside down on you.

For, it turns out, those infants you lost so much sleep over . . .the toddlers you chased about . . . the tweens you drove from pillar to post. . . those very teenagers you blogged about just to save your sanity. . . One day you turn around and find that they indeed grow up and become beautiful, determined, and successful young women.

Drip Dry and I took a trip to visit our three daughters who happened to be together this weekend.  Veggie, a first-year medical student; Trigger, in her first year of a master's program in school psychology; and Ponzi, a very-recent college graduate - the completion of her undergraduate degree hideously delayed by the onset of various autoimmune diseases.

I just love seeing them together.  United.  Supportive.  .Optimistic.  Confident.  Those girls have overcome so many obstacles life has placed in their way.  I don't believe that there is another feeling that can compare to it.

Except my love of the bathroom at my hotel.

Now I know that I am supposed to be practicing Zen detachment techniques.  But how can any living, breathing human being remain detached about a hotel bathroom as beautifully Zen as this?  The simple square sink?  The gorgeously shower with special side jets?  Those washcloths fashioned into a lotus design?

I believe I was in love.  So attached/detached to that hotel room that I'm scheming ways to go back.

In love with my family.  And in love with my bathroom.