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.

I Know that God Didn't Invent Tai Chi Regalia

I'm sure by now we all are aware of the time a restorative yoga class taught me the rather awkward pose of Lady With Head in Toilet Bowl so you may understand why I have a little aversion to all-things-yoga.

Except the pants.

Really.  Have they ever invented a single piece of clothing better than these things?  Face it; these things are perfect.  If I were God, these pants are exactly what I would have sent Adam and Eve out of the garden wearing once they ate that forbidden fruit and realized they were naked.

Stretchy.  Elastic.  Comfy.  Wrinkle free.  Available at Walmart.  BLACK!  Hide everything.  Double as PJ's when you're lazy.  The simple act of wearing them makes people think you have just come from the gym.    The same will be true for leggings the second I lose those extra pounds that make me glad I'm not naked in the garden.

So even though I hate Downward Facing Dog, I love the apparel  in which I am forced to act like a sick canine against my will. 

Not so Tai Chi.

Yeah, this outfit may double as really, really, really big PJ's  (although the front closures look a bit difficile for the lazy girl in me) but just imagine what folks would think if you donned your tai chi pants to run to the grocery store.  And as much as I love the White Crane Spreads Its Wings move, I admit that I'd look like Crazy Woman Wears Big Sleepwear while doing it.

Would God ever contemplate sending you out of the garden wearing this regalia?  I think not.  Even the angels would have been laughing.

Wednesday, March 8, 2017

How Does One Blog These Days?

As many of you may realize, I've been out of the blogging business for a while now and feel just a bit like a fish out of water.  How does one blog these days?  And what happened to all of those other blogging voices I used to hear?  I carefully searched for the 109 blogs which I used to follow on a daily basis and, to my dismay, discovered that a mere 36 of them are still up and running.  Think about it.  The majority of these were humor blogs.  Has life become less humorous?  More serious?

Or did my fellow bloggers encounter obstacles like I did?  Did life rise up and hit them with an enormous whammy?  Do they find it now impossible to write about their experiences with illnesses?  Grief?  Loneliness?  How would the funny lady talk about an alcoholic husband?  Drug addicted teenager?  How would a dependable jokester admit to the world that his wife has left him?

Maybe we were always blogging to cover our different sadnesses in some way.  I know that I was writing to save my own sanity.  Perhaps the same is true now.

But part of our human-ness is that we change and grow with life's experiences.  There is no fixed or unchangeable self.  We cannot control what comes our way, but we can control our reaction to it.  Adversity makes us stronger, more compassionate, and allows us to rise above our circumstances.

No comparisons, no advertising, no comments.  This is what I hope my bloggy life will embrace now.  I hope to convince you that, although my disease has limited me somewhat, my disease and I are not one.  I intend to advocate at times, inform at times, and certainly complain at times.  But I hope to still be able to find the humor in life again.

Aaaaaah, humor. . . 

Tuesday, March 7, 2017

For All Those Interested

I suppose it is finally time I told my story about my illness and hospitalization.

Most anyone suffering from an autoimmune disease should be familiar with the roulette wheel of medications.  Physicians keep prescribing them until they find one that sticks.  The one that works, where you don't suffer from its wide range of side effects.

With Sjogren's Syndrome, these second-line medications are called Disease Modifying Anti-Rheumatics.  They are almost all immunosuppressants and meant to be steroid-sparing agents because, although steroids like prednisone do an excellent job at reducing inflammation (and hence joint pain) long term use has proven to be very harmful to joints like hips and knees.  And so, a little more than a year ago my rheumatologist put me on Methotrexate.  After about three months I developed excruciating headaches and so was switched to another drug, Arava.  After about eight months on Arava, we decided that the extent of my hair loss was just not acceptable.

Enter Imuran.  After a medication break over the holidays, I began taking this new immunosuppressant on January 3rd.  A word of explanation here:  I currently take something like 11 different medications on a daily basis, so I may not be as attentive as a normal person would be when starting a new medication.  I was two weeks into it, had no headaches, and my hair loss had slowed down significantly.  And this new medication had the added benefit of not taxing the medicatee's liver so there were no cautions about alcohol consumption while taking it.  Primo for me!  I scheduled myself for the required bloodwork to be done four weeks after starting the medication and thought no more about it.

I began to feel dizzy on January 18th and took some potassium and magnesium supplements because I had a strange premonition that my electrolytes were out of whack.  But that night I began vomiting and so I thought I somehow acquired a stomach bug.  I woke up with a fever of 101 the next morning and the diarrhea and vomiting became quite bad.  Same too the next day.  Yet everyone seemed to tell me that there was this terrible stomach bug going around which lasted two days.  So even though I couldn't lift my head from the pillow without vomiting, I soldiered on.  Saturday morning I felt somewhat better and was even able to keep my morning meds (including my Imuran) down for the first time.  Soon I felt awful again.

For the life of me I cannot figure out why it took me so long to make a connection between my illness and the Imuran, but at last I realized that this immunosuppressant may be making it harder for me to recover.  I truly felt like hell for the third day in a row and finally decided that I should go to the ER.  By the time I got there, I was barely able to talk.  Once I was evaluated by the triage nurses I was rushed into my ER bay where a resident and a nurse were waiting for me.  I remember them putting me into a hospital gown and then I surrendered myself to their care - aware of the fact that I no longer needed to hold myself together.  Grateful, so grateful to be there.

Things happened rapidly.  Blood was taken.  A thermometer was placed in an area I don't want to mention. Bags of IV fluids - including IV antibiotics - went into both arms.  An abdominal CT scan was performed.  I heard them declare success in bringing my heartrate and temp down.  But my blood pressure seemed to remain a problem.  Next there was discussion about the fact that my nose and lips had turned blue.  And my skin was mottled.

What I didn't know was that I was in a state of septic shock and that my blood pressure was at an all-time-low of 50/30.  My kidneys, liver, circulation, electrolytes, and other systems were all shutting down in order to protect my heart.  My thinking was fuzzy.  My heartrate had been at 184; my poor heart working overtime to try to restore my blood pressure.  The only way to bring up my blood pressure was to insert an additional IV in a vein in my neck which flowed directly to my heart and begin to flood me with vasopressers.  Thank God it worked.

But what had happened?  How had I gotten to this state?  My bloodwork revealed that my platelets were reduced and my white blood cells had all but been wiped out and were at extremely low levels - allowing an infection to enter my bloodstream and induce sepsis.  I was experiencing a rare, but potentially life-threatening, reaction to Imuran.

I have since read the over 50 percent of the people who end up with septic shock do not make it.  I have also read that each hour left untreated increases that mortality rate by 6 percent.  I can't help but wonder just how many hours I had left in me.

Sunday, March 5, 2017

Singing Bowl Drop Out

Unlike my short romance with yoga, I wouldn't consider myself an actual Singing Bowl Drop Out - yet - but I failed to attend the meditation I had signed up for this morning.


In all honesty, I think I may be afraid because the experience itself was the very last thing I did before I was hospitalized.  In fact, I recall having a very real dizzy spell before entering the classroom.  The beginning of the dreaded illness.

Will it ever go away?  Will I ever stop thinking about and rehashing my close call?  Is it possible to stop worrying about the possibility of it happening again?

Yet I've come so far.  This is the very first week that I found myself beginning to feel better. . . to have a bit more energy and lose that hollow feeling inside of me.  To feel like my old self again  (not exactly like my old healthy self, but like the new normal that comes with Sjogren's.)

Time.  I suppose it will just take time.


Friday, February 3, 2017

Go Commando!

Do you remember when your mother told you that you should always wear clean underwear because you never know when you will end up in the emergency room?   Did she ever tell you that you needed an additional dozen in reserve?

I posted my experience with ending up in the ER without my legs shaved, but it never dawned on me to prepare for the possibility that I would end up in the hospital for days on end.  And who would ever guess that - after my close brush with death - one of my anxieties would center around underwear?  Underwear?

It just so happened that a week or two before I got sick I cleaned out my underwear drawer, leaving myself exactly ten pair of the same underwear.  Ten of the same thing; three different colors; exactly how a control freak like myself wants life to be.

Except I don't do laundry often enough any more.  Those three thong-wearers have moved out of the house and Drip Dry no longer trusts my laundering skills.  And so I do my own laundry about once a week.  I think you can do the math.  This, my friends, leaves one vulnerable to getting sick and landing in the hospital with only three pair to spare.  What's worse, if you happen to be really sick for two days in advance of heading to that hospital, you are sporting your last pair of clean undies in the ER!!!!

There has to better a better way. . .  Yes, I know I could buy more granny panties or do my laundry more often, but I have come up with a better solution:

Go commando!

That way all ten pair of undies can stay neatly folded in my drawer and be available for any emergency.  Like suppose that aliens invaded and I had to go hide in an underground bunker.  I would have a ten day supply of underwear.  Likewise, if an asteroid came crashing into earth and all water and electricity were disrupted, I'd be spanking clean for ten full days.   How about earthquakes, tornadoes, hurricanes?  We would be forced to take refuge in a shelter and everyone around me would be stinking by the second day.  But not me!  I'd be as fresh as a daisy.

Go commando.  It's brilliant.