Ceramic Hips and May’s Bucket List In Progress

Today is January 2^nd, 2014.  My loyal, extremely hard working, and assiduous second pair hip prostheses for the last 16 years, has spoken in the most utterly deafening mode.  They have made it crystal clear to me that they want nothing more to do with me.  They have clicked, creaked, crackled, and clamored for my immediate as well as 24/7 attention.  At times, the pain, yes, the pain, calls for my surrender.  They want out.  And I want them out!

As I am sitting in the car in the parking lot at Bridal Veil Falls, Yosemite, I ponder, as well as pontificate on the inevitability of surgery and subsequent recovery of my third pair of artificial hips.  I am surrounded by the magic of this gobsmacking glacier and stately rock compositions.  Images of enjoying a somewhat pain-free existence: hiking among the woods on snowy/icing trails (plenty of snow and ice here today) and surveying and partaking such massive, serene and majestic granite landscape, dance in my head.  All of a sudden, every trail beckons my humanity.  What angst!  What longing!  It will be a rebirth to raise a step quietly, confidently, and comfortably again in 2014.

There is hope that my lupus flare might stabilize and the operation can take place in 2014 or, later, whenever I stabilize.  Total hip replacements are brutal—ask any orthpod.  And revisions are beyond brutal, something more ghastly than gross—both in difficulty for the surgeon and roughness for the patient.  It is more gory than road kill.  Replacing the femur head/shaft and the acetabulum in hip revisions is Craftsman Tools time, friends…  Details not need to be shared. 

Recovery and rehabilitation will be lengthier, I suspect, after all, this will be the 4^th time my hips will be opened up, hacked on, invaded upon, replaced and screwed together again.  Long racing stripes (scars) will be reutilized and reopened.  Many medical and technological improvements have been discovered and brought to practice since my last pair.  Many of them are much kinder and more patient-friendly.  I expect ceramic, but I will stay open, as I may not be the right candidate for ceramic.  It will take 6 months to a year after surgery before I get fully accustomed to and be comfortable in walking distances again.  O how I have missed my walks!

Retreat in nature births renewal of spirit.  Magnificent quietude offers laser-sharp clarity.  Contemplation becomes default rather than deliberation.  The faintest Bucket List crawls into my psyche.  I am in awe of the power of my desires.

Where:

1.  Mount Whitney—I must come and climb you again.  A deep sense of remorse and guilt I had felt in hiking you last time, also my first time.  I failed to respect you.  I failed to train.  I failed to have fun.  I failed in every aspect.  This time, I will train and I will breathe into the grandeur of your essence.  I will treasure each step instead of tread.

2. Australia/New Zealand—It is time.  That’s all.

3. Nashville, Tennessee—Soak up the music, May.

4. The Silk Route and then some—Nepal, Bhutan, Xizhuang, Miramar & more China

5. South Pacific Islands/Southeast Asia—Teach piano, voice, Chinese and English abroad

What:

1.  Start or rejoin a chamber music ensemble—the “high” from playing and performing a Brahms’ piano quartet (and other literature like it) is life changing and life lifting.  Endorphins flow for days, months and years.  And that’s a good thing!

2.  Purge my wardrobe—I have finally exhausted myself to no end by evaluating the good and the bad of never out-growing and out-wearing my clothes for the past 40 years.  Geez, they all still fit!!  Guess what?  I still wear them!  Sorry, I need to catch up with clothes of today.  It is not about fashion.  It is about my “habitual” and “unintentional” dressing.  I must tend to this life detail with more forethought, and possibly, more passion, more diligence.

3.  Simplify/reduce my “stuff”.  As a dear friend once said to me, “May, we think we own our stuff; but ultimately it is the stuff that owns us.”

4.  Study Chinese herbal medicine—go back to school, likely.

This list is a living, breathing one.  I may not accomplish any in 2014.  I will tweak.  No Desperation.  No need.

It is a good beginning. 

In this very moment, pain does no occupying—just at this moment.

The difference between hope and anticipation is that anticipation is active and the former is passive.  Hope is in one’s trusted longing whereas anticipation is in one’s act of obtaining and discovering.

So, I await.  I anticipate.   

BALD vs. BALD--My Blood Curls

Foreword:  This blog ought to make you laugh with a tinge of worry, but laugh first, by all means!!

Found all my nice hats from about 20 years ago--first time I balded.  I marvel at my wisdom and the care that I have taken to keep them boxed up and clean.  O, let's not forget that human hair wig!!  Summer comes will I don the piece, of course.  Winter is the perfect time to lose 70% of my hair--cold and hats go together.

My lupus is raging in spite of the raise of all disease-modifying RXs.  My lab studies read like a death sentence.  Let's start with DNA-antibody production: 87????  Really, I must be making antibodies to kill off all my collagen, fingernails are brittle, hair so fine and burnt-looking and has decided to relocate onto my pillows, floor, brush and other surfaces.  And this is on the outside, what's happening with the collagen on the inside?  Horrid!!

Now, sedimentation rate is in the three digits.  Complement 3 & 4 are nearly low enough to touch the floor. White cells--all the break-down of my precious white cell menu--where art thou?  Not on my blood cell menu?

OK, enough grumbling.  This flare came out of no where, well, technically it came from my own body.  Yet I am wracking my brain as to what could have precipitated this wild orgy of my blood cells--without even informing, let alone asking for my permission to carry on like this.

So, is my hair important to me?  I guess so.  The question is redundant, of course.  Yet the more serious issue is "will I overcome this flare to enjoy new hair?"  This severe flare leaves me with some cheeky, yet profound and thought-provoking circumstances and questions to ponder.

1.  Protein in the urine means kidney involvement.  Am I ready to cope with kidney failure?  Will my body make it this time?
2. Whacked out potassium, sodium, chloride levels are harming to my heart-am I going to flat-line again?
3. Avascular necrosis in both knees and higher dosages of steroids---now that's a formula for an opportunity to contribute to the orthpod's pocket.
4. Do I continue my life as is or stop doing everything?  And what good is that?
5. Will my hair grow back this time?
6. Tired? Why it is my first name on 3 hours a night of sleep--Prednisone at bedtime can do that.  Three hours actually is good.
7. Do I have all my affairs in order?
8. I hate the thought of the probability of multi-organ lupus!
9. I am just getting started to live for myself--now I am whining!
10. My body chemistry is not balancing the equation! Darn!  I dislike "my" messing up with my own body.  So self-love has dipped….and self-acceptance--Hahaha--has left for the Arctic in October!

A typical work day: 

• Wake up, get a huge paper towel, starting fingering through my hair.  Strands and strands are awaiting to be gleaned and wrapped up in paper towel . Repeat in another hour.  Each harvest: about 300-500 hairs.
• My wonderful pharmacy awaits!!
• Shower and dress.  Takes twice as long--joints are inflamed and achy all over.  Hot water in shower really helps
• Water drinking commends--in large quantity through out the day
• Act like nothing is wrong in front to students, colleagues, choir members, congregation and of course, my Facebook friends.
• Retreat to reading and studying--usually online.
• Eat, may be
• Work on work details via emails and general writing.  Music selections and study some more along with practice on piano and voice
• Eat, may be. I never feel hungry anymore.
• Check on Facebook to see how many people read my stuff--90% of the time disappointed because people just post "I am at/I am doing/zillions of game apps/their cats/their dogs/their horses/political rants/memes/memes/memes/and more memes.……
• Night meal with another dance with my pharmacy, this time the dance involves about 50 or so little, swallowable, odd-shaped, tiny objects in different shapes and sizes.  They dance all the way to my stomach.
• Sleep, may be

I have no solutions at this point.  This blog is for a bit of levity in the update.  I think taking it one day at a time is a great start. This is trial and error ordeal all over again.  Hoping for a good trending for the lab studies next round.

I was asked if I am depressed yesterday.  I asked back, "What is NOT depressed?"  I received no answer.  The sense of forlornness and extreme concern and fear surpass depression as most with severe lupus patients would understand.  No, I am not going to kill myself on purpose BUT, I can't speak intrinsically for my blood chemistry at the moment.  I hope you all see the irony.

Some well-intentioned "shrinks", sorry, did I just write shrinks?  I guess I mean shrinks. Some of them analyze that auto-immune diseases is the manifestation that the individual DOES NOT like herself on a subconscious level and that's the reason her body goes hog-wild and destroys her in spite of herself.  If you are one of these shrinks, I might seriously consider getting a gun and take good care of you!  Others friends and family members suggest that we, somehow, are doing something or not doing something to come to this point.  Well, as much as a peace advocate, I WILL use that gun.  Those friends who tell me that I look great and wish me to get WELL soon--I WILL shrink you myself.  I will never be well in the true sense of wellness.  I may be stable, at best.  Not to forget the well-intentioned self-proclaimed nutritionists and the know-it-alls, please do not tell me to eat 2 pounds of blueberries/whatever a day or I will live in your house and occupy your personal bathroom facilities, indefinitely. Those who cry--STOP it.  I mean it.  Suck it up--I do.  All them "I worry about you's"--you can zip it up as well. You don't know the meaning of worry, trust me. Ones who avoid me after knowing I am sick.  You are good--keep avoiding me until you get shrunk.  The contradictors, please go to medical school, after you get in, specialize in rheumatology, finish your residency, see patients and research for about 20 years, then come back and I will have tea and biscuits waiting for you.

The friends who want to help in tangible ways: look into my soul via my eyes--do you see the same person as you have always seen in me?  If so, let's have a great time in our dialogue--from weather to religion, to election, to family, to cultures, to philosophies, to faith, to love, to peace, to war, to science, to music, to fashion, to money, to God, to Satan, to evolution, to creationism, to books, to movies, to laundry, to house-keeping, to bargain-hunting, to money-making tips, to money-saving tips, to trip-planning, to gardening, to personal affairs, to tombstone epitaphs, to church, to gossip, to vanity, to shopping online, to shopping off line, to old friends, to Facebook, to Youtubing, to children, to siblings, to relatives, to parents, to fights, to laughter, to everything, and of course, to hair-styles.  By being a true friend, you have just lightened the load immensely.  Please try to be this kind of friends to all people who suffer alone and often in silence as our world does not validate invisible illnesses.

My blood curls just a bit when I think all the hassle I might wreck upon my immediate family if I were to depart.  So for that reason alone, I shall try to be merciful to my husband, my son and my brothers. I will stick around and blog!  And you had better read it and respond, as true friends do.  Shalom.

P.S. I am certainly preaching to the choir if you have read thus far!!!  Hahahaha!

MUSIC vs. PAIN

I have turned a corner on this lupus flare--thanks to Prednisone--plenty of it.  My hands are still on fire and fingers feel like sizzling sausages.  This flare involves alopecia.  I have lost about 30-40% of my hair.  Thank goodness I had plenty to start.  The fever decided to leave and fatigue has self-invited.  This has been a wake-up call.  I auto-pilotted lupus in my life for over 25 years. Almost 10 major surgeries, hundreds and thousands of $ of modern pharmaceuticals have sustained me.  MRIs, X-rays and biopsies of all sorts have invaded my rather salvaged physical body.  

MUSIC, it has been music all along, that has me alive, upright and dignified.  It seems so obvious to my family, colleagues, friends and students that May Tucker means MUSIC and vice versa!!  Yet I just recently realized in the utmost, deepest part of my being that MUSIC is not only my profession and identity.  MUSIC is the anchor of my soul. I even surprised myself.  Years and years of fermenting the beauty and techniques in piano, voice, conducting and organ is only the surface. The packaging.

In light of sounding marsh, one of my favorite sayings is, "There IS a song for everything!".  Let me tell you about my songs and how they are imprinted in my soul (humming inside my head silently):

1. "Joyful, Joyful We Adore Thee" 1-2 verses---every 8 weeks when I go in for lab--about 8 big vials of blood is drawn

2.  "Twelve Days of Christmas" and "Do Re Mi"---Hip MRIs (8x), knee (5x) every other one

3. "Fur Else"---Head MRIs (5-7x), the entire song.  There are 5 different segments in head MRIs

4.  "Happy Birthday to You"  (1x)---per each articular injection (finger joints)

5.  "世上只有媽媽好"-"In the World only Mother is the Best" (1x in Mandarin)---getting myself out of bed, also one of Preston's lullabies

6.  "Gial Sole Dal Gange" 1 verse---getting to the shower

7.  "Tchaikovsky Concerto in B Flat" first 3 pages---knee injections

8.  "Chopin Piano Etude in E Major" and "Brandenburg Concerto-Spring" (yes I can sing the entire Spring)---driving to UC Davis Cancer Center

9.  "Maiden's Prayer"---walking into and waiting to see my hematologist in the Cancer Center

10. "O We Ain't Got a Barrel of Money"---chest X-rays

11. "How Great Thou Art" (3 verses)---needle tests in buttocks and legs

12. "Abide with Thee" (3 verses)---visual field tests

13. "There Must Have Been Something Good"---waiting to be injected with whatever

14. "You Are My Sunshine" (x's as needed)---start a IV line

15. "Beethoven Apathetigue 2nd Mov't"---epidual injections, kidney biopsy and bone marrow biopsy

16. "When I Fall in Love"---first song I sang to Preston--he was 5 seconds old

17. "I Gave My Love a Cherry"---time of silence when told I need another surgery and another one of Preston's lullabies

18. "Scarborough Fair" (5-6x)---pulmonary capacity tests

19. "Pachelbel Canon in D" (however long)---being wheeled into surgery and awaiting unconciousness

20. "有隻雀仔跌落水“－”Has a Bird Fallen in the Water" (1x in Cantonese) to the tune of "London Bridge" ---Silence for being told another lupus complication like alopecia as occured

Most of these are light-hearted and cheerful tunes with no significance in the text.  Some have no text.  Considering the circumstances in which I am humming them is a logical approach.  I can offer no rhyme or reason for these tunes--combusting spontaniety.  MUSIC has penetrated to the core of me.  Often when a friend is tellling me something my brain has a ready song to reply.  This mechanism is magical.  It is self-hipnosis, self-redirection, and coping with pain without being destroyed in the process.

Not all the songs are springy and I assure you there will be more selections.  There is an unfathomable depth of sorrow when pain is a constant companion.  So deep in the physique and plunged in the essence of a being.  Intractable pain, unrelenting pain, interminable pain, punctuating pain, excruciating machete pain, straining pain, deranging pain, maniacal pain, dull but bony pain, pulsating lymph node pain, pyrexic pain/chill, clutching pain, burning pain, moving pain, freezing pain, hovering pain (hands), nauceous pain, writhing pain, articular pain, soft-tissue on fire, revetting eye pain, crapulous pain, wretching abdomenal pain, vascular headache pain, mysterious refered pain, trancient spastic pain, itsy-bitsy toe pain, post-surgical pain, wanting-to-die-now pain and their constancy and companionshp can test and sober one's mustard.  I wish I were the crying type.  So I "Klingon" every hope that "This All Shall Pass" will ring and sing true for me, soon, someday, before I expire, and expire I with it.

MUSIC has this cherubimish yet virginal capacity to help me cope.  MUSIC is the balm.  The worse the pain the sillier the songs I hum.

Now, always have a song in your heart! 

My cream-colored Yamaha antique wind-up metronome from Hong Kong sitting prominently on my very FINE grand piano. My parents and husband's gift to me when I turned 30!!!

Pain is Ephemeral……As it should

Pain is ephemeral….. as it should

by May Tucker on Monday, November 26, 2012 at 12:59pm ·
This note is to remind myself and many of Facbook friends, associates and family that pain is ephemeral.  It should NEVER:

1.  Dictate life

2.  Destroy self-esteem

3.  Errode faith

4.  Derail hope

5.  Disintergrate friendships

6.  Defect reputations

7.  Delay successes

8.  Dessicrate humanity

9.  Deaden love

10. Dash away tranquility

11. Daunt confidence

12. Defile beauty

13. Deduce self-worth

14. Degrade morale

15. Deface the essence of self

16. Defunct utility

17. Demean dignity

18. Delude minds

19. Deprave humanity

20. Decry justice

21. Derogate laughter

22. Devastate the soul

23. Deteriorate the body

24. Detain goodness

25. Diffuse joy

26. Dilute excitement

27. Dent pleasures

28. Discard purity

29. Displace eternity

30. Dispel goodness

And the grandest of all:  Pain does not direct our lives.

WE DO! 

May's first orchids!! 2012

Walking, or Not?? On Water??

It's been a long time since I lasted blogged.  One injury after another--life is full of challenges.  I have porous bones and they break easily.

This blog needs your help and feedback.  Since my joints are laden with arthritis and soft tissue fibromyalgia, I can only do water aerobics in very warm water.  Most of the gyms I have visited set the water temperature s between 75-80F.  That's too cold for me.  I will probably have to learn to get used to it.  Is there another way to work out?  Yoga?  What type of yoga that would accommodate limited extensions?

This entire summer has been a blur.  Plenty of busy work and lots of traveling.  I so enjoyed the little bit of hiking my family and I did.  Wishing I live closer to nature.  The offering of nature is limitless and also extremely healing.  The smell of the mountain earth and salty ocean breeze sooth the wounds and the soul.

I am determined to try another way to exercise and now on an adventure of seeking the suitable path.  It seems life is just like exercising--did Forrest Gump say that??  This has been heavy on my mind and I worry that I will lose all options.  At this juncture, working out in water seems the only alternative as my knees continue to deteriorate.

Life gives me tests and I intend to take them, pass and A's them.  I need study guides and I am turning to you, my friends for them.  

Weight-training remains an option although I am more an aerobics person.  I will work out again if weight-training is the only way.  I will patiently wait another 6 weeks.

I intend to make the best of my predicament.  Walking in water might be the only way.  Blessings on the poor water!!!

PAIN or PAVEMENT: The Walking Infirm….to walking affirmed ☀

PAIN or PAVEMENT: The Walking Infirm….to walking affirmed ☀: "I definitely think there are nerve damages in your left sciatic nerve.  That's the reason you have the drop foot recurrences."  Dr. Gorin, ...

The Walking Infirm….to walking affirmed ☀

"I definitely think there are nerve damages in your left sciatic nerve.  That's the reason you have the drop foot recurrences."  Dr. Gorin, my new neurologist, said in a matter of fact manner.  "Let's order an EEG needle test on it.  You are not afraid of needles?  Are you?"

"My father was an acupuncturist so I had had them in my body many times; besides, I've had this test done before.  Nothing was definitive then so it was diagnosed as a viral infection of the peripheral nerves."  I mumbled.  "I don't mind doing it again if you feel that the working diagnosis is not working anymore."

"So, just you know, the needles in EEG's are much bigger than the acupuncture needles.  They are the size of a large sewing needle, you know?  You are sure you're OK with it?"  Dr. Gorin was asking in disbelief, chuckled slightly.

"It's really OK if you think I need one.  I am fine."  I reassured him.

It was last Thursday.  The corridors in University of California, Davis, Medical Center were cold and stark.  The walls are in various shades of surgical light greenish blue.  It was early in the morning.  As usual, I go to these tests and doctors' appointments by myself, driving myself unless I am not allowed to leave without another driver.  It was on the fifth floor, room 5025: "EEG, MRI's fMRI's".  Opened the door, saw a familiar smiling face--she remembered me from previous exams.

"Nice blouse, from China?"  She asked.

"O, yes, bought it about 25 years ago!"

""Still fits?"  She hummed along.

"I guess so!"  I murmured likewise.

"Goooddt Morrning!  I am Docccttor Oskaarssen (neurologist).  How arrr yuuuu?"  Heavy Norwegian accent, very charming.  "I'ma going toooo test yuuu todayah with needles.  Arrr youuu afraiduh?"  He had a big grin while talking and I could barely keep a straight face.

"I'm OK and let's get started."  I wanted to get it over with so badly, I thought to myself.

20 minutes into the test the nice lady tech left and told me that the Dr. would "do" the needles by himself.  So 40 minutes later, about 20's jabs--no warnings given, clean punctures were all over my left leg and buttock.

"Arrr youuu in pain?  Yuuu OK?"  Dr. O asked.

"I will be fine and thank you for the EEG and the needle jabs."  I replied after getting dressed.

At that point Dr. O turned around, laughing uncontrollably (I didn't get this one) and said, "VWhat is jab?  Yuuu arrr not bleeding, arrr yuuu?"  So sorry about the needles.  My jobuh is to makeh every patient hateh me.  I cannotuh win.  Have a very niceh afternoonuh and keepuh youeh leg oupp!"  He nodded and shook my hand.  " Canntuh getuh rid of my accentuh.  I hopeh yuuu underrrstanduh me.  Bye bye."  I was dying on the inside, taken by his accent--smirking my way out under my breath!

As I was walking to my car and the sting started to set in.  They weren't that deep, only about one to two inches.  I guess it must have been the sheer number of pokes that overwhelmed my left leg muscles.  By the time I got to my car, I found myself limping, just a bit (that's a lot of me).  All the while I was readying my brain on my work-out as soon as I got home (may be I will rest a bit first)--going over the routines in my mind, envisioning the miles on the treadmill, number of pounds of weight on each apparatus……etc...

Two hours passed, I was in complete work-out attire.  Driving, parking and then walking to the gym awoke a few disgruntled left leg muscles.  I discounted my feelings and pressed on.  On the Matrix 5 minutes later, Incline 15, 4 miles per hour, set for 30 minutes--I was huffing and puffing 5 minutes into this and the pain was absolutely tortuous.  Five more minutes my left leg felt like it was going to explode.  I pressed on.  Finished the walk/climb, finished the grueling routines on weight-training machines, back on the Matrix for a second round: Incline 15, 3.8 miles per hour and another 30 minutes, and lastly, 60 sit-ups.   2 hours and 15 minutes later, I was finished and I could not feel my left leg and it was still there and no blood.  I thought that was good and I was rather heroic!  Just a hint of fear started to settle into my frontal cortex!

This entire moronic recount of my "hardcore" mentality became horrific after I got home. I started to read the brochure that I was supposed to have read before the test and later I signed on the dotted line to accept any consequences from the EEG.  Let's see how low my intellectual quotient (common sense) was:  First paragraph ended with "cold compresses highly recommended and bed rest for 24-48 hours required after testing.  Second paragraph:  Call 911 when pain begins to feel like stinging.  Five pages of possible and probable scenarios were explicitly explained and various cautious measures were recommended.  It was about 4.5 hours too late.

The telling/blogging of this experience might make you all think I've gone mad; nonetheless, it takes exactly the right dose of a particular type of denial and cock-eyed optimism for me to survive my Russian roulette disease called lupus.  It is always my decision to act upon informed instincts and I know myself.  I have chronic pain and I know the difference between bad and worse pains.

I am not just anyone living with a chronic illness.  I am a tough and determined person with a heart, intelligence, and conviction to live my life to the fullest.  Remember, I had had that test one other time!!!  And I rested for 2 hours afterwards this time!!  And that's the line I am sure some of you might have missed earlier in this blog.  I had no fear because I was assured from my knowledge and experience.

I am not advocating anyone else to do what I did, I am simply trying to express how my life has been like an EEG test for the last 27 years.  If I had read the brochure and indoctrinated myself with all the the probable possibilities, there would have been no music, no graduate school, no husband, no pregnancy, no son, no house, no friends, no concerts, no driving, no walking, no bilingual school in China, no travels, no working out, no eating, no reading, no laughing, no purpose, and the "no" list can go on forever.  And most of all, no normalcy, NO LIFE whatsoever, under the heavens.

And oh!  Life is too plum and beautiful to miss, even in pain and in agony.  There is joy and humor in everything and everyone alive and I am NOT planning on missing any of it until it's my time to depart and transcend to walk into another realm of glory.   May the sun smile on me again tomorrow morning!?--to which I can faintly hear Spock replying, "Affirmative!"