Is there ever a good time to share my lupus diagnosis with "new" friends? Do they need to know? Am I a burden? Will they be spooked? Am I defective merchandize (so I have been told)? Oughtn't I keep it to myself and not bother? Will they even understand? How savvy are most strangers to autoimmune disorders? How should I react when they look puzzled? Do I have the patience to explain? What do I do with all the "advice and cure" they give? The patronizing? The judging? The superstitions? The "poor thing, you"? Should I tell them that it's unlikely that I will ever die from lupus soon? Just because I haven't?
These are real situations that all of us lupus patients live with everyday. Recently I have somewhat encountered all the above scenarios.
It has not been easy the last three or four months. Three years ago I suffered a serious lupus setback. Chemotherapy was added to my daily RX regimen. Although my blood studies revealed more disease activities, the readings have been consistent. In January I noticed a searing pain in the gut. It comes and goes. By February the pain became very severe and caused violent vomiting. Upon clinical exam I was told that my liver was enlarged. Two weeks later I broke two ribs (9 & 10) in the lower right quadrant from this enlargement. The chemo that I was taking was probably the culprit. So I stopped taking it after discussing with my rheumatologist. So far I have only had two relapses.
Meanwhile, I continue on with my life and all its sundry responsibilities.
I can now answer the questions from the first paragraph--just my own observations and conclusions. There is never a good time to tell new friends I am a chronic sickie. They don't need to know. I am not a burden. Yes, most of them are spooked. In some way, I am defective; but then again, who isn't? I do keep the daily-going-ons to myself. No, most people have not the intelligence nor interest to know about autoimmune diseases unless they have one. If they look puzzled and wanted to know, I will patiently explain. Friends will share with you all kinds of "diet cures" because they care about you. Got to love them for that. In terms of patronizing, judging, superstitions, and the "poor thing, you"--O well, I think I am better off not being close to them. How I will die? I don't know.
Treatment options for me are quite limited. Corticostroids and chemo are no longer viable options. What would I do if the blood studies two months from now reveal more disease activities? I think I will let tomorrow worry itself.
I will just press on.
Wednesday, April 1, 2015
Saturday, January 24, 2015
PAIN vs PEELS
Accumulation is part of human experience. Looking at my own handiwork is rather daunting. The stuff we own become the owner of us. Unbeknownst to most, the act of collecting and gathering has a rather negative side. As we agglomerate, we also build forts around to guard these possessions. This is all-inclusive. We become more dimensional, more complicated, more evasive, and more multi-layered.
Life is not stories. Life is incidents stringed together. Each happening creates a minute sculpted impression as adornment to our persona and to our souls.
There is nothing more impressive than chronic and unmitigated pain. Maneuvering life with pain requires a clever mind and a steady grip, which, don't always come to me.
Pain is part of peel-building. As society has certain expectations as to how people ought to be, we "hurters" must accommodate to survive.
Each time I reply "I am fine" to the greeting of "How are you?" I just put on another peel.
Social grace is the grandfather of little white lies. In this culture we have yet learned to accept the darkness of the human experience.
Over the last three decades these peels gracefully accompany me. Now I think and I know they must come off as they have become heavy and cumbersome. I have been disoriented by their sheer existence.
Onward and inward.
Life is not stories. Life is incidents stringed together. Each happening creates a minute sculpted impression as adornment to our persona and to our souls.
There is nothing more impressive than chronic and unmitigated pain. Maneuvering life with pain requires a clever mind and a steady grip, which, don't always come to me.
Pain is part of peel-building. As society has certain expectations as to how people ought to be, we "hurters" must accommodate to survive.
Each time I reply "I am fine" to the greeting of "How are you?" I just put on another peel.
Social grace is the grandfather of little white lies. In this culture we have yet learned to accept the darkness of the human experience.
Over the last three decades these peels gracefully accompany me. Now I think and I know they must come off as they have become heavy and cumbersome. I have been disoriented by their sheer existence.
Onward and inward.
Thursday, December 4, 2014
PAIN vs. PALLIATION
Due to omnifarious reasons, mostly inflammatory arthritis from my lupus, my right hand was operated on 4 moths ago. The surgery entailed a joint reconstruction of basal thumb, a trigger finder, a pinched nerve and carpal tunnel repair. There are four incisions. It was not heroism to have my right hand cut. It was of dire functions and survival. And it was brutal--the pain. And I am no slouch.
I was determined to be my own physical therapist, occupational therapist and rehabilitation officer afterwards. With a soft cast covering the right thumb and wrist, I performed on the piano 9 days after surgery, with 9 fingers. It was borderline insanity and stupidity. Yet, through the misery, I am recovering from the savaging knives. Nonetheless, the overall arthritis of the hands, fingers, and other major and minor joints is unrelenting.
Audiences cannot tell the difference in my piano/organ playing. I can. My hands and fingers feel differently: more tightness, tension and less spontaneity.
I have long accepted a life of malady. With it comes the misery of sensory communications of what is wrong--pain. It is my body's way of letting me know something is terribly amiss. I accepted that fate long ago. There is no mercy. Only surrender.
I was once asked about chronic pain. I replied, "I don't remember not having pain, ever."
I liken the protracted monster to a bad car engine. When a car starts swiftly, runs smoothly, accelerates spontaneously and has no hesitations, no one ever thinks about the engine until one hears a noise. Pain is noisy. Yet one often gets accustomed to it helplessly. As for myself, I have been on a physical de-sensitization course for decades.
Once I was caught in a tender moment of vulnerability, I was told that I was crying in my sleep--I had no recollection of that. Obviously my subconscious sighs and grieves for me. My lupus, though does not define me, is my chassis. I accept the challenges, the limitations, the throes, and the knowledge that harsh medicines including chemotherapy will remain my life-long companions. These companions steal my wares whenever they want. I will then have to live without.
A recent reunion with a childhood friend gave me a taste of a better presence. She practices Qigong and acupressure. There was a bit of respite after her offering. I am once afresh to take charge of my pain management as I had almost given up. I have choices: PT, heat, massage, ultra-sound, gentle exercise, reflexology and acupressure.
A paraffin bath will arrive next week for my hands and feet. Massage therapy will be explored. I might even learn Tai Chi.
With fervency, I decided to wage an encore bet with my pain. When offense is not attainable; defense ain't so bad.
The game is on. Hope and strategy--in high gear.
Friday, January 3, 2014
Ceramic Hips and May’s Bucket List In Progress
Today is January 2nd, 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 4th 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.
Wednesday, January 23, 2013
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:
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!
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 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!
Tuesday, December 11, 2012
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!!!
Monday, November 26, 2012
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:
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
Thursday, September 6, 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!!!
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!!!
Tuesday, April 24, 2012
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.
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!"
"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!"
Friday, March 23, 2012
Walking Anew….into a new community
Well, I am getting used to the Matrix TH-3 "moving very fast" pavement. It is so much easier on my knees. The weight-training is coming along. I am getting stronger.
It amazes me as life would promise new opportunities and people into it for reasons and purposes that only time and effort can decipher. I have met many people in the gym. There are a handful of whom I have come to long to see every time I go work out. I could not utter a single reason as to why at first. I am not their family, not really friends yet, not colleagues and I don't really "need" them at all! So why?
I have been wracking brain about it so I can write this blog. In the quiet of the night, the wee hours of darken morning, I finally figured it out. This community of "gymites" help lighten my burden. What is my burden? The burden is a figure of speech--it is practical the effort, sweat, driven-determination to work my body into a frenzy, sweaty, and muscle-burning state. These people are there for the same reason. They have all made the decision to put out the same effort and they experience identical physical exertion. And this is only on the surface.
We go there to do the same thing with various reasons, but we go and we work out. And in this very process a communion of spirits, thoughts, and lives are united. Bonds formed and friendships forged.
A wonderful lady told me her continuing battle with breast cancer, which is now in her liver and she has a port for chemo as she was riding on the ecliptic bicycle. She has been on chemo for over a year and she works out like a champ. I told her my story and we promised to pray for each other daily.
I mentioned in my last blog about an ex-boxer who is so kind and is always on the look-out when I am on an apparatus to make sure that I am OK. He trains me whenever I need it. He shares his story about his three children and grandchildren every time we see one another. The proud is gleaming in his eyes.
Pastor Dan continues to praise God and rouse up the gym room and he lifts all our spirits. He is a gift from the heavens.
One lady talks the entire time and has a readily audible voice. I counted that by the third sentence into each work-out the subject of "food" enters into the conversation--she brings it up. So much humor that one time I had to get off the treadmill because I was laughing uncontrollably. She is also a Sacramento King's fan and jokes galore. She is the jest, bar none, and I need the humor!
One young mother comes during her lunch break everyday to get about a 40-minute work-out to keep up with her 2-year old. She always looks perfectly groomed and has the coolest gadgets.
One young Chinese lady--out of college--looking for employment and she comes because of all the stress of looking for a job. She used to own a Chinese restaurant but decided to find another gainful employment.
Then there is Fran---watch out. She is a dynamite--about everything, and we are having an Presidential Election year here in USA.
All these people and I have in common are our faith and our dedication to physical fitness. We share both every time we see each other. It is a spiritual feast with sweat, so to speak. We carry our burdens into the gym, we open our bags and then we share. That is the reason I long to see them. They GET it! And I love it.
When I found out I had avascular necrosis in both of my knees. I was sunken. It is practically a death sentence for my poor knees because I will HAVE to replace them someday. That will be brutal. So I isolated myself so I could brood. So I brooded and reluctantly re-joined the community gym for good measure. It took a lot of will power to get dressed and get myself in the car to a "strange" place for a new routine. I was not anxious, I was angry.
It was sheer will power for several weeks before I started to chat with other "gymites". I watched them talk and laugh and giggle so I just had to have some of that. The rest is history.
The feeling of having people around you, not just anybody, but people who GET it, to work out with feels like the words in the song "You raise Me Up" sung by Josh Groban--"You raise me up to more than I can be….".
It amazes me as life would promise new opportunities and people into it for reasons and purposes that only time and effort can decipher. I have met many people in the gym. There are a handful of whom I have come to long to see every time I go work out. I could not utter a single reason as to why at first. I am not their family, not really friends yet, not colleagues and I don't really "need" them at all! So why?
I have been wracking brain about it so I can write this blog. In the quiet of the night, the wee hours of darken morning, I finally figured it out. This community of "gymites" help lighten my burden. What is my burden? The burden is a figure of speech--it is practical the effort, sweat, driven-determination to work my body into a frenzy, sweaty, and muscle-burning state. These people are there for the same reason. They have all made the decision to put out the same effort and they experience identical physical exertion. And this is only on the surface.
We go there to do the same thing with various reasons, but we go and we work out. And in this very process a communion of spirits, thoughts, and lives are united. Bonds formed and friendships forged.
A wonderful lady told me her continuing battle with breast cancer, which is now in her liver and she has a port for chemo as she was riding on the ecliptic bicycle. She has been on chemo for over a year and she works out like a champ. I told her my story and we promised to pray for each other daily.
I mentioned in my last blog about an ex-boxer who is so kind and is always on the look-out when I am on an apparatus to make sure that I am OK. He trains me whenever I need it. He shares his story about his three children and grandchildren every time we see one another. The proud is gleaming in his eyes.
Pastor Dan continues to praise God and rouse up the gym room and he lifts all our spirits. He is a gift from the heavens.
One lady talks the entire time and has a readily audible voice. I counted that by the third sentence into each work-out the subject of "food" enters into the conversation--she brings it up. So much humor that one time I had to get off the treadmill because I was laughing uncontrollably. She is also a Sacramento King's fan and jokes galore. She is the jest, bar none, and I need the humor!
One young mother comes during her lunch break everyday to get about a 40-minute work-out to keep up with her 2-year old. She always looks perfectly groomed and has the coolest gadgets.
One young Chinese lady--out of college--looking for employment and she comes because of all the stress of looking for a job. She used to own a Chinese restaurant but decided to find another gainful employment.
Then there is Fran---watch out. She is a dynamite--about everything, and we are having an Presidential Election year here in USA.
All these people and I have in common are our faith and our dedication to physical fitness. We share both every time we see each other. It is a spiritual feast with sweat, so to speak. We carry our burdens into the gym, we open our bags and then we share. That is the reason I long to see them. They GET it! And I love it.
When I found out I had avascular necrosis in both of my knees. I was sunken. It is practically a death sentence for my poor knees because I will HAVE to replace them someday. That will be brutal. So I isolated myself so I could brood. So I brooded and reluctantly re-joined the community gym for good measure. It took a lot of will power to get dressed and get myself in the car to a "strange" place for a new routine. I was not anxious, I was angry.
It was sheer will power for several weeks before I started to chat with other "gymites". I watched them talk and laugh and giggle so I just had to have some of that. The rest is history.
The feeling of having people around you, not just anybody, but people who GET it, to work out with feels like the words in the song "You raise Me Up" sung by Josh Groban--"You raise me up to more than I can be….".
Friday, February 24, 2012
Walking on Modified Pavement….and a bit more
I have engaged myself in the past few weeks physically, mentally, and emotionally to a modified walking routine plus the new regimen of weight-training exercises. All resulted as the knee MRI revealed avascular necrosis in both knees. I was very disturbed to see image upon image the "black holes" in the bottom of both femurs on the MRI. I no longer have words for news and images of this sort of my own body. Numb is often the initial reaction. And then there is this "forlornness" and deep sorrow for the losses I have yet to learn to accept.
Nonetheless, there is also a rainbow after the storm. We live in an area called South Natomas in Sacramento and there is a small but efficient work-out room in the South Natomas Community Center. For $15 a month I can walk on their treadmills and use the weight machines all I want. I used to be a member there when it was $5 a month--how inflation creeps up. I joined this place because it is run by Sacramento City and Recreation and I know that the money I pay goes to the sustainability of my own city--instead of going to some huge profit-making, fancy gym. Local is good.
Walking 30 minutes on Matrix Th3 model treadmill, with an incline of 15--the highest and the pace of 3.5 to 4 miles a hour is optimal for me. I start my work-out with the 30-minute walk. And then there are 8 different weight-training and body building apparatus that I can use to build all the muscles on my body. I usually do 3 sets of 10 on each. There is also a abundant set of free weights--from 1 lbs to about 250 lbs, which I never touch. After going through the body-building process I return to my Matrix pavement and walk another 30 minutes with the same intensity. The total distance is usually around 3.7 miles per work-out. I do this routine on Tuesdays, Thursdays, and Saturdays--rain or shine. Oh well, it really does not matter since I am indoors.
I dreaded this change in the beginning, not because of the money--for those of you know me you know how thrifty I am--and yes, $15 is still $15. I joined because I ran out of options and alternatives. Lupus pain returned with a vengeance and since I could no longer be on regular street pavement--the hardness and unevenness are not safe, I desperately needed another way of making endorphins.
I joined the beginning of February and since then I have met some very inspiring people/friends in the gym: a very young couple who have been working out a year and both lost 150 lbs each. Speaking with them and sharing their pain in their lives help me cope. I met a Pentecostal minister who single-handedly turned the room into a worship service while everyone is working out!! I so enjoyed talking to a pair of retired-boxers who were in the Navy and went to Vietnam. Their stories fill me with awe and are most intriguing. Another patron and I share the same orthopod and he has 2 replaced knees and a replaced hip. And then there is Fran. The woman you do not want to mess with, under any circumstances. I could go on.
The common thread to all this is that human and social interactions are critical to ridding my gloominess and maintaining my well-being. They give me perspective and purpose. I want to see them and talk with them again as soon as I leave the joint.
This even surprised me because I LOVE to be alone. I find that my work converts and forces me to be an "extrovert" and that when I come home, I am totally drained. After teaching 5-7 students I am literally hollow. I need retreat. Fellowship is my strange bedfellow, especially when I work out, so I thought.
Thinking back to my childhood days when I was under the "control" of my 2 older brothers and other older cousins, I'd prefer to be alone so I would not do anything that would appear stupid. And this has framed my temperament as well as my outlook on sociality. "The smart one always just listens".
Tomorrow is my regular work-out day and I am wondering if they are not all going to be there! Each person walks in to that little work-out room with an interesting story and dignity that I respect. I have learned from the ex-boxers on weight machines and more proper stretching techniques. They have also taught me how to hold my head and neck for proper sit-ups. The preacher prayed for my illness and encourages me in every step to look to the Personal Savior for refuge. Fran and I talk about just anything with an animation that surpasses winning a "presidential election". The young couple really opened up yesterday and shared with me the horror of alcoholism they are enduring with their father.
These personal interactions are gems. In my entire life I have only a handful of people with whom I share my life in totality. And yet these "strangers" are so genuinely welcoming and they share openly their lives, their struggles, and their aspirations with me--no strings attached.
I am grateful to them. Lupus does not have to be the central point of my work-outs anymore, neither is my pain. I have found other kindred souls and I am in great company. The rainbow is absolutely gorgeous at the moment!
Saturday, February 4, 2012
Walking Interrupted…..in a funk
I am in a huge funk. I want to lugubriously scream to my bones! I want one of those embryonic stem cell teams to inject me and help me grow new bone. OK. Enough ranting, time for the story.
It was 17 days ago. I set out for a 6-miler on an early Wednesday morning--with walking hoodie and all. 20 minutes into the walk my left knee was yanking at my chain and I was in pain. Since I was walking with someone I finished the walk as decorously as I could and thought I needed more stretching once I got home.
When I opened the door to my house all I could do was collapse onto the front chair in excruciating pain in the left knee. It was so intense that I had tears on my face--so rare an incident that I even surprised myself. This pain level 10 remained for for 3 entire days. I told Byron to go ahead and shoot me already. Canes and crutches were utilized to get around. I did not walk or exercise for 2 full weeks.
The very next day x'rays were taken at the doctors. Suspecting some kind of meniscus tear because the x'rays looked fine to the family practitioner and me. Made an arrangement to have an MRI the following Monday to rule out the dreaded avascular necrosis, AVN--meaning bone death (reason for my prosthetic hips) and the exact tear/s. I thought for sure the MRI would reveal a small tear and that was it.
Obviously I was NO prophet. By Wednesday the results came back. MRI results were OK--soft tissue irregularities but no tear. Literally two minutes later my doctor sent me the more in-depth results of the x'rays via e-mail after a radiologist looked at them more carefully. I have multiple bone infarcts and edema in both knees--AVN has been in both knees for quite a while. Little pieces of bone in the knees have died and an infarct per each fracture is the result of each micro-stub. The prior Wednesday's 6-miler must have giggled and triggered a break inside the left knee that such severe painful symptom occurred. Another little piece of bone had died that day. Another loss.
Now, like Monk always says, "Here's the thing."---"You mean I can't even go walking anymore?" I was brooding in sorrow and anger. I went into a funk. The difference between a funk and depression is simple to me. A funk is something one is entirely in control of and is also aware of and know that it is healthy for the heart to feel troubled and even broken. Time will heal most wounds--both physical and emotional. Depression is when one simply falls into it without realization (most of the time) and one is fighting to get out without success. I am not fighting to get out of my funk. I LET me grieve. I need to feel the loss and work it out so I can face myself, strategize a Plan B, and to accept my new reality.
I like my funks. I spoil myself with my funks. I need my funks. What do I for myself when I am in a funk? I do all the work that I am supposed to--teaching, choir directing, playing for church, going to all necessary meetings, cooking, washing, shopping, cleaning, self-hygiene, etc… The biggest difference is that I spend a great deal of time by myself--reading, resting, watching Youtube and Chinese soaps. And I give myself love and permission to do all that! I am licking my wounds.
Actually writing about it is a sure sign that the end of this funk is near--well, may be a couple of more weeks. So what made me realize I needed to end this funk? I joined a gym. My pavement is now Matrix TX-10 (fancy Nordic Track-type treadmill made by Matrix). The sliding mechanism is much easier on the knees. Actually I am supposed to wait 6 weeks for the bone to heal but since there is almost no pain (just a little twitch here and there) I decided to work out since my lupus pains had returned due to lack of endorphins.
Thanks to the years of listening to my athletic son, I am finally taking up weight-training and a little of body-building. This Walking Butterfly bravely stepped on the Matrix pavement 2 days ago and tracked 2 miles, then topped it off with 40 minutes of weight-training. Today the same routine. I intend to keep this up for a few months--every other day. Never looking back, my 6 or more miler days might be over, I am not sure at this moment. So I am going to get some muscle on them bones finally. Some day soon I won't have to listen to the medical assistants telling me, "If I were you, I'd get some more meat on them bones." every time they take my blood pressure with a pediatric apparatus, so annoying, really.
I realized this blog started out as a blog about my walking. I am still walking, yet there's more to just walking now. I am re-sculpturing my body in addition to walking. I hope to regain more strength in the knees by staying on the Matrix pavement longer and longer. Whatever and whenever that is going to happen to my knees will happen and I will probably be in another funk, possibly even in a bigger one because they will have to be replaced in the future. I am Ok with it. And I hope you are OK with it, too.
Wherever there is knowledge and hope, fear can never penetrate. I am still on top after 26 years of lupus. Not once have I stayed down--still in the ring!!!!
It was 17 days ago. I set out for a 6-miler on an early Wednesday morning--with walking hoodie and all. 20 minutes into the walk my left knee was yanking at my chain and I was in pain. Since I was walking with someone I finished the walk as decorously as I could and thought I needed more stretching once I got home.
When I opened the door to my house all I could do was collapse onto the front chair in excruciating pain in the left knee. It was so intense that I had tears on my face--so rare an incident that I even surprised myself. This pain level 10 remained for for 3 entire days. I told Byron to go ahead and shoot me already. Canes and crutches were utilized to get around. I did not walk or exercise for 2 full weeks.
The very next day x'rays were taken at the doctors. Suspecting some kind of meniscus tear because the x'rays looked fine to the family practitioner and me. Made an arrangement to have an MRI the following Monday to rule out the dreaded avascular necrosis, AVN--meaning bone death (reason for my prosthetic hips) and the exact tear/s. I thought for sure the MRI would reveal a small tear and that was it.
Obviously I was NO prophet. By Wednesday the results came back. MRI results were OK--soft tissue irregularities but no tear. Literally two minutes later my doctor sent me the more in-depth results of the x'rays via e-mail after a radiologist looked at them more carefully. I have multiple bone infarcts and edema in both knees--AVN has been in both knees for quite a while. Little pieces of bone in the knees have died and an infarct per each fracture is the result of each micro-stub. The prior Wednesday's 6-miler must have giggled and triggered a break inside the left knee that such severe painful symptom occurred. Another little piece of bone had died that day. Another loss.
Now, like Monk always says, "Here's the thing."---"You mean I can't even go walking anymore?" I was brooding in sorrow and anger. I went into a funk. The difference between a funk and depression is simple to me. A funk is something one is entirely in control of and is also aware of and know that it is healthy for the heart to feel troubled and even broken. Time will heal most wounds--both physical and emotional. Depression is when one simply falls into it without realization (most of the time) and one is fighting to get out without success. I am not fighting to get out of my funk. I LET me grieve. I need to feel the loss and work it out so I can face myself, strategize a Plan B, and to accept my new reality.
I like my funks. I spoil myself with my funks. I need my funks. What do I for myself when I am in a funk? I do all the work that I am supposed to--teaching, choir directing, playing for church, going to all necessary meetings, cooking, washing, shopping, cleaning, self-hygiene, etc… The biggest difference is that I spend a great deal of time by myself--reading, resting, watching Youtube and Chinese soaps. And I give myself love and permission to do all that! I am licking my wounds.
Actually writing about it is a sure sign that the end of this funk is near--well, may be a couple of more weeks. So what made me realize I needed to end this funk? I joined a gym. My pavement is now Matrix TX-10 (fancy Nordic Track-type treadmill made by Matrix). The sliding mechanism is much easier on the knees. Actually I am supposed to wait 6 weeks for the bone to heal but since there is almost no pain (just a little twitch here and there) I decided to work out since my lupus pains had returned due to lack of endorphins.
Thanks to the years of listening to my athletic son, I am finally taking up weight-training and a little of body-building. This Walking Butterfly bravely stepped on the Matrix pavement 2 days ago and tracked 2 miles, then topped it off with 40 minutes of weight-training. Today the same routine. I intend to keep this up for a few months--every other day. Never looking back, my 6 or more miler days might be over, I am not sure at this moment. So I am going to get some muscle on them bones finally. Some day soon I won't have to listen to the medical assistants telling me, "If I were you, I'd get some more meat on them bones." every time they take my blood pressure with a pediatric apparatus, so annoying, really.
I realized this blog started out as a blog about my walking. I am still walking, yet there's more to just walking now. I am re-sculpturing my body in addition to walking. I hope to regain more strength in the knees by staying on the Matrix pavement longer and longer. Whatever and whenever that is going to happen to my knees will happen and I will probably be in another funk, possibly even in a bigger one because they will have to be replaced in the future. I am Ok with it. And I hope you are OK with it, too.
Wherever there is knowledge and hope, fear can never penetrate. I am still on top after 26 years of lupus. Not once have I stayed down--still in the ring!!!!
Monday, January 16, 2012
The Walking Hoodie…
How can the sun and I co-exist? This is a serious question and dilemma for me this past 25 years and for future years to come.
I cannot ever imagine myself walking in the dark for many reasons: the primary being safety, and then the issue of falling due to not seeing well. Since I have very expensive hardware inside my body (prostheses), falling poses a very dangerous medical complication that I would rather not take the chance. Yet no matter how early I start walking in the morning, the sun greets me with vim and rigor every time. My lupus skin does not approve.
My dermatologist found 2 small lesions on my face and of course, I was admonished. My son joked with me about getting me a Burqa!! I started asking around but wearing a Burqa might subject myself to another set of possible unpleasantries.
A funny bone tickled me. I thought of the ski masks that bank robbers use in the movies and started wondering where I could get a hold of one--not going to rob a bank, promise.
Last week I thought all the cyclists I run into during my walks and how their faces are always covered underneath their helmets. Then I thought about costumes like Spiderman and Batman. I walked into Sports Authority and asked to see face masks and face hoodies. I was directed to the cycling section. There they were----so many different types: from a skull to Spiderman!! There were at least 30 different prints and several types of fabric. I chose a plain light fleece fuchsia hoodie that covers the head, the neck, and the entire face with a slit opening for eyes. There were only 2 colors, black and fuchsia. I thought the black one looked ominous so I chose the latter.
With proper medical creams and ointments the facial lesions are abating and my face is all but covered during my walks. In the summer, there are tube-like spandex headbands that can cover my face from the cheeks down and a wide-brimmed visor would cover the forehead and eyes.
This is beginning to be a boring blog even for me to write. The point about this story is not so much the process of finding proper cover for my skin and my face. This blog is about the mere fact that I can't even co-exist with the early morning sun for even a couple of hours without fearing for my life. So many of us take so many things for granted.
When I was a little girl my mother made sure I was in the morning sun everyday for at least half an hour. She was adamant about vitamin D and sunshine. Now I take vitamin D in a pill and cover my entire body when I greet the sun. What an irony!
Each time I lose a normality due to lupus, I grieve just a bit. Over the years I have learned to grieve less and less. Nonetheless, grief is real and painful. I have learned to use humor to redirect my thought patterns. I have coined a funny name for each of the medications I take and I call my fake hips "hardware". However, underneath all that "jazz", I am too painfully aware of the limits lupus has placed on my life and on the quality of my life.
Walking in my hoodie is both warm, and cool:)! I am the only one! People look at me, stare at me, and a couple of Muslims guys did a double take (wrong color for Burqa). Yet I am rest assured that the sun and I are friends again and we can most certainly co-exist.
I cannot ever imagine myself walking in the dark for many reasons: the primary being safety, and then the issue of falling due to not seeing well. Since I have very expensive hardware inside my body (prostheses), falling poses a very dangerous medical complication that I would rather not take the chance. Yet no matter how early I start walking in the morning, the sun greets me with vim and rigor every time. My lupus skin does not approve.
My dermatologist found 2 small lesions on my face and of course, I was admonished. My son joked with me about getting me a Burqa!! I started asking around but wearing a Burqa might subject myself to another set of possible unpleasantries.
A funny bone tickled me. I thought of the ski masks that bank robbers use in the movies and started wondering where I could get a hold of one--not going to rob a bank, promise.
Last week I thought all the cyclists I run into during my walks and how their faces are always covered underneath their helmets. Then I thought about costumes like Spiderman and Batman. I walked into Sports Authority and asked to see face masks and face hoodies. I was directed to the cycling section. There they were----so many different types: from a skull to Spiderman!! There were at least 30 different prints and several types of fabric. I chose a plain light fleece fuchsia hoodie that covers the head, the neck, and the entire face with a slit opening for eyes. There were only 2 colors, black and fuchsia. I thought the black one looked ominous so I chose the latter.
With proper medical creams and ointments the facial lesions are abating and my face is all but covered during my walks. In the summer, there are tube-like spandex headbands that can cover my face from the cheeks down and a wide-brimmed visor would cover the forehead and eyes.
This is beginning to be a boring blog even for me to write. The point about this story is not so much the process of finding proper cover for my skin and my face. This blog is about the mere fact that I can't even co-exist with the early morning sun for even a couple of hours without fearing for my life. So many of us take so many things for granted.
When I was a little girl my mother made sure I was in the morning sun everyday for at least half an hour. She was adamant about vitamin D and sunshine. Now I take vitamin D in a pill and cover my entire body when I greet the sun. What an irony!
Each time I lose a normality due to lupus, I grieve just a bit. Over the years I have learned to grieve less and less. Nonetheless, grief is real and painful. I have learned to use humor to redirect my thought patterns. I have coined a funny name for each of the medications I take and I call my fake hips "hardware". However, underneath all that "jazz", I am too painfully aware of the limits lupus has placed on my life and on the quality of my life.
Walking in my hoodie is both warm, and cool:)! I am the only one! People look at me, stare at me, and a couple of Muslims guys did a double take (wrong color for Burqa). Yet I am rest assured that the sun and I are friends again and we can most certainly co-exist.
Friday, December 30, 2011
Walking….full circle
There is one more day left in 2011. As usual, I bundled myself up like a penguin (white jacket and black leggings) and was on my 7-miler route this morning.
The streets were calm at 8:30 in the morning, not much traffic, semi-hybernating/partying week: the week between Christmas and New Year. I started to retrace my steps in 2011 as I was stepping forward in a fast-paced power-walk mode.
Where do I start? let's start with my lupus--a very good place to start. 2011 has turned out to be the year of my regular and on-going visits to UC Davis' Cancer Center for leukopenia--low white count. As I have grown almost too painfully accustomed to bad news, it was a bigger blow than usual. The sight and the smells, the patients and their ashen countenance proved to be a grueling exercise to walk in there and not be "moved". A lovely East Indian hematologist greeted me and now we are fast friends. She is young, warm, engaging and the best of all, encouraging at every turn. Just as we thought I needed hormone treatments, my blood would do an about turn and the white count would be inching up. Then down, up, down, up….and then the red count would take a nose-dive, then up, down, up, down.... My red count and white count have been playing on a swing all year--24/7--it does not seem to abate. And so I have learned to live with yet another medical routine, and another doctor in the docket.
Another lupus issue in 2011 is this pain predicament. The very reason the walking and this blog started. Please do read my past blogs to get more details. Yes, I started to fight pain with walking (very painful at first). Honestly, I can say I have traded one type of pain with another. Power-walking leaves me extremely sore whereas lupus just tortures me with unrelenting pain everywhere in the body.
June of 2011 marked a significant time for me and my entire family. Our son graduated from high school and decided to go to Berea College in Kentucky in the fall. We became empty-nesters and I am loving it.
My walking has turned into a time that I guard and treasure. I recounted this morning my journeys to Montreat, North Carolina in June, then Berea, Kentucky in August, and the countless drives to Daly City, California visiting my mother. I can declare that I am walking to think, I am walking to calm, I am walking to quell pain and most importantly, I am walking to be sane.
I calculated that by now I have set my footprints over 350 or so miles of pavement. Every footprint is intentional and purposeful. My legs became re-aquainted with the former marathon runner (moi) and the muscles are back. There is more a spring in my steps, there is power in my stride. And it is high time to consider "walking" a marathon in 2012.
My heart is full and my legs are pumped!
Wednesday, December 7, 2011
Walking Wounded
"I have a pain in the butt!" I said. "And I will BE a pain in the butt if I don't rest up now!"
My husband is used to hearing these words from me. My sciatic nerves are shot from the trauma of the two total hips replacements and hips revisions. The pain in the buttock is no laughing matter when it comes to walking or simply being just upright.
A month ago I decided to give it up and called the doctor for another slow/long-acting epi-dural injection of steroids. This Friday morning I am going in to be poked. Hopefully this will ease up the protestation and the revolution in the behind for a another couple of years.
It is an archaic attempt to live with pain anymore, by all technological and medical standards. By that I mean that the medical establishment has created, invented and then re-created and re-invented so many solutions and drugs to pain-control that anyone choosing to live with pain is either a martyr or a moron, so I thought.
Well, I live with pain, non-retractable, relentless pain. So I am either a martyr or a moron. I am both.
I am a martyr not by choice, but by my genetic make-up (now the pandora box of genes is open). Mother nature has predestined me to a life of lupus. A life that is full of pain. Mother nature has also designed my digestive system to only accept certain foods and chemicals. When my stomach finds certain pain meds repulsive and starts a revolt, I am back in pain. When my body continues to ignite and inflame itself, I am in pain. So the martyrdom is half self-inflicted without cognitive agreement. The moronic part is the way I have chosen to make my own pain relief--by walking.
Due to limitations to what I can do physically to make endorphins, I chose walking. When I walk at least 2 hours a day, my pain is tolerable with help from Tylenol. It is super time-consuming.
I do have another choice. The choice of lying around and doing nothing--much like many other lupus patients. I have given this choice a lot of thought. At times this choice is so alluring that I am actually "good" with it. The unacceptable drawback of this choice is: ONE WILL HAVE NO LIFE.
Life to me is immensely more than pain or lupus. Life is more important than May Tucker or Walking Butterfly. Life is a philosophy that echoes a footprint in the sand: it shows that someone has made an impression on this earth, however ethereal. My footprint is only one in billions. But it's mine.
I want to step out and be counted. I want to feel the ocean hitting the shore with my feet. I want to build my own sandcastle. I want to bask in the sun and feel its warmth. I want to taste the salt of the sea. I want to swim and laugh. I want to party with my friends and family. I want to have a picnic and then some. Lastly, I want to have my corner on this earth and make an impression with the writing from my heart. Nothing, not lupus, not anything else can take that away from me.
So I am the walking wounded. And woundedly I walk.
My husband is used to hearing these words from me. My sciatic nerves are shot from the trauma of the two total hips replacements and hips revisions. The pain in the buttock is no laughing matter when it comes to walking or simply being just upright.
A month ago I decided to give it up and called the doctor for another slow/long-acting epi-dural injection of steroids. This Friday morning I am going in to be poked. Hopefully this will ease up the protestation and the revolution in the behind for a another couple of years.
It is an archaic attempt to live with pain anymore, by all technological and medical standards. By that I mean that the medical establishment has created, invented and then re-created and re-invented so many solutions and drugs to pain-control that anyone choosing to live with pain is either a martyr or a moron, so I thought.
Well, I live with pain, non-retractable, relentless pain. So I am either a martyr or a moron. I am both.
I am a martyr not by choice, but by my genetic make-up (now the pandora box of genes is open). Mother nature has predestined me to a life of lupus. A life that is full of pain. Mother nature has also designed my digestive system to only accept certain foods and chemicals. When my stomach finds certain pain meds repulsive and starts a revolt, I am back in pain. When my body continues to ignite and inflame itself, I am in pain. So the martyrdom is half self-inflicted without cognitive agreement. The moronic part is the way I have chosen to make my own pain relief--by walking.
Due to limitations to what I can do physically to make endorphins, I chose walking. When I walk at least 2 hours a day, my pain is tolerable with help from Tylenol. It is super time-consuming.
I do have another choice. The choice of lying around and doing nothing--much like many other lupus patients. I have given this choice a lot of thought. At times this choice is so alluring that I am actually "good" with it. The unacceptable drawback of this choice is: ONE WILL HAVE NO LIFE.
Life to me is immensely more than pain or lupus. Life is more important than May Tucker or Walking Butterfly. Life is a philosophy that echoes a footprint in the sand: it shows that someone has made an impression on this earth, however ethereal. My footprint is only one in billions. But it's mine.
I want to step out and be counted. I want to feel the ocean hitting the shore with my feet. I want to build my own sandcastle. I want to bask in the sun and feel its warmth. I want to taste the salt of the sea. I want to swim and laugh. I want to party with my friends and family. I want to have a picnic and then some. Lastly, I want to have my corner on this earth and make an impression with the writing from my heart. Nothing, not lupus, not anything else can take that away from me.
So I am the walking wounded. And woundedly I walk.
Tuesday, November 29, 2011
Walking and the homeless….
As I walk on the beautiful American River bike trail most mornings, I see uncountable homeless families staying in tents along the river bank. My heart goes out to them, especially to the children and the elderly. Last Wednesday I counted over 150 tents. And there I was walking, holding a very nice water bottle and keeping my distance as if they were going to hurt me. How absurd is that?
Walking is supposed to ease my pain, not add to it, I thought. I could not help but had my eyes and heart opened by the plight of these folks and families down on their luck. So many are hurting in so many ways. The beautiful scenery of the river is compromised by the shivering adults and children I witnessed.
It would be inhumane to do nothing. Yet what can I do? These folks have their daily routine down to a science: big brunch at Loaves and Fishes and then shower, children go to Mustard Seed School for the homeless where they are fed again, and dinner is up for grabs. Most of them have an address with the county welfare office so they can receive food stamps (it comes like a credit card now) to buy additional food and other needed items.
I understand my limitations yet I decided to do what I can, in the capacity that would allow me to be charitable without risking my own safety. My church has a food closet that serves thousands of people every month. The South Sacramento Interfaith Partnership Food Closet opens for 3 hours a day and is run by mostly volunteers. The mission of this organization is not for the homeless but is geared towards the marginalized folks who live in homes and have addresses but do not not enough money to buy all needed food for their families at times.
I donated 200 pounds of potatoes 2 days before Thanksgiving--it was like a drop in a bucket. I felt so helpless because I wanted all of them to have plenty yet reality was different…..
I learned something in the last a couple of weeks as the weather has turned cold at night and in the early morning. I am blessed because I can eat all the food I want, I have a beautiful and warm house, and I don't lack anything. I walk to fight pain and yet I saw another type of pain. The pain of the rawness and bleakness of the homeless and all the complications that go with it.
As I continue to walk, I hope my soul would remain open and be vigilant to the people I encounter. There are more than my own pain and my own endorphins. There are the misfortune and challenging survival of many whose pain I have yet to know.
Walking is supposed to ease my pain, not add to it, I thought. I could not help but had my eyes and heart opened by the plight of these folks and families down on their luck. So many are hurting in so many ways. The beautiful scenery of the river is compromised by the shivering adults and children I witnessed.
It would be inhumane to do nothing. Yet what can I do? These folks have their daily routine down to a science: big brunch at Loaves and Fishes and then shower, children go to Mustard Seed School for the homeless where they are fed again, and dinner is up for grabs. Most of them have an address with the county welfare office so they can receive food stamps (it comes like a credit card now) to buy additional food and other needed items.
I understand my limitations yet I decided to do what I can, in the capacity that would allow me to be charitable without risking my own safety. My church has a food closet that serves thousands of people every month. The South Sacramento Interfaith Partnership Food Closet opens for 3 hours a day and is run by mostly volunteers. The mission of this organization is not for the homeless but is geared towards the marginalized folks who live in homes and have addresses but do not not enough money to buy all needed food for their families at times.
I donated 200 pounds of potatoes 2 days before Thanksgiving--it was like a drop in a bucket. I felt so helpless because I wanted all of them to have plenty yet reality was different…..
I learned something in the last a couple of weeks as the weather has turned cold at night and in the early morning. I am blessed because I can eat all the food I want, I have a beautiful and warm house, and I don't lack anything. I walk to fight pain and yet I saw another type of pain. The pain of the rawness and bleakness of the homeless and all the complications that go with it.
As I continue to walk, I hope my soul would remain open and be vigilant to the people I encounter. There are more than my own pain and my own endorphins. There are the misfortune and challenging survival of many whose pain I have yet to know.
Saturday, November 19, 2011
Walking and Body Weight
I have been asked to address the more popular and light-hearted subject of walking and weight loss by many friends. So this blog is for them.
I have always be slim. During my teen years and 20's I was more muscular because I was a long distance runner. I was also a vegetarian. Now, I am a proponent of "whole foods" and I do eat meat. In addition, I believe in eating seasonally and consuming local produce as much as possible.
That being said, I do have a some insights on long distance walking and body weight. I am not a medical professional but the simple math of intake and output is undeniable. If one has more intake than output, one is going to gain weight; and then the opposite is that one will lose weight.
I have not changed my diet much to accommodate my hours of walking. I have added more lean protein such as Fage's non-fat plain Greek yogurt (so delicious), cottage cheese and more fresh fruits--sometimes up to 12 servings of fruits a day. I still eat an almost vegetarian diet with the exception of more salmon or other fish. My caloric intake has not increased by much, may be around 200 calories more a day, at the most. And I walk at least 2 hours a day and once a week I walk 5 hours and then some.
When I stepped on the pavement to start walking over 2 months ago, 3 weeks into my walking I noticed that my body started to re-shape itself: flatter stomach, less adipose under my entire body--firmer and more toned muscles emerged. It is evident that even my face lost its roundness yet my weight did not drop significantly. I weigh just about 5 pounds less but I feel more compact as most of you know that muscles weigh more than fat. So for me, walking has not been the magical weight loss program for me. However, if you have 35% of fat or more in your body, you will lose more weight more quickly. Lean folk like me just get toned and denser muscles.
As you may remember, I did not start walking to lose weight. I started to walk to curb pain. So I have not paid as much attention to weight loss as I should have. The 5 pounds I lost was alarming because it happened very quickly--second week. So I have been doing everything to maintain my current weight---116 lbs. at around 5'6".
I do want to talk about whole foods and seasonal and local diet. I eat foods that look like the way they are from the ground or from the original sources---no box foods for me. In terms of vegetables and fruits, I eat seasonally: berries are abundant in late spring and earlier summer and that's when I eat them. I know grocery stores are still selling strawberries and blue berries now--they are imported and not seasonal here in CA so I don't eat them. In terms of meat and fish I buy them from a butcher instead packaged deals. Chinese and Asian markets are known for their swimming fish and fresh cuts of meat. I get to see the meats and choose what I think is the freshest.
A couple of other important dietary habits I have employed are: absolutely NO white sugar and NO deep-fried foods; suffice to say, I can't remember the last time I went into a fast food joint. These actions might take a bit of discipline for most people but they came quite easily for me as I never did like much sweets and deep-fried anything.
So much about diet and weight loss, I can't say enough the importance of some sort of exercise for everyone. I walk because of a serious personal conviction to survive and cope with my health issues. Yet one does not need to step on the pavement because of a health issue. Walking is cheap--all you need are comfortable shoes, warm clothes, sun-block and may be music. No membership fees and all the other fancy trimmings of a health club. Walking is natural. Everyone walks. Walking is by far the most holistic of all exercises and when done regularly with proper eating habits, one can expect miracles.
Now, put on your comfy shoes, wear a visor, take your house key, and hit the pavement, everyday. Just do it!!!
I have always be slim. During my teen years and 20's I was more muscular because I was a long distance runner. I was also a vegetarian. Now, I am a proponent of "whole foods" and I do eat meat. In addition, I believe in eating seasonally and consuming local produce as much as possible.
That being said, I do have a some insights on long distance walking and body weight. I am not a medical professional but the simple math of intake and output is undeniable. If one has more intake than output, one is going to gain weight; and then the opposite is that one will lose weight.
I have not changed my diet much to accommodate my hours of walking. I have added more lean protein such as Fage's non-fat plain Greek yogurt (so delicious), cottage cheese and more fresh fruits--sometimes up to 12 servings of fruits a day. I still eat an almost vegetarian diet with the exception of more salmon or other fish. My caloric intake has not increased by much, may be around 200 calories more a day, at the most. And I walk at least 2 hours a day and once a week I walk 5 hours and then some.
When I stepped on the pavement to start walking over 2 months ago, 3 weeks into my walking I noticed that my body started to re-shape itself: flatter stomach, less adipose under my entire body--firmer and more toned muscles emerged. It is evident that even my face lost its roundness yet my weight did not drop significantly. I weigh just about 5 pounds less but I feel more compact as most of you know that muscles weigh more than fat. So for me, walking has not been the magical weight loss program for me. However, if you have 35% of fat or more in your body, you will lose more weight more quickly. Lean folk like me just get toned and denser muscles.
As you may remember, I did not start walking to lose weight. I started to walk to curb pain. So I have not paid as much attention to weight loss as I should have. The 5 pounds I lost was alarming because it happened very quickly--second week. So I have been doing everything to maintain my current weight---116 lbs. at around 5'6".
I do want to talk about whole foods and seasonal and local diet. I eat foods that look like the way they are from the ground or from the original sources---no box foods for me. In terms of vegetables and fruits, I eat seasonally: berries are abundant in late spring and earlier summer and that's when I eat them. I know grocery stores are still selling strawberries and blue berries now--they are imported and not seasonal here in CA so I don't eat them. In terms of meat and fish I buy them from a butcher instead packaged deals. Chinese and Asian markets are known for their swimming fish and fresh cuts of meat. I get to see the meats and choose what I think is the freshest.
A couple of other important dietary habits I have employed are: absolutely NO white sugar and NO deep-fried foods; suffice to say, I can't remember the last time I went into a fast food joint. These actions might take a bit of discipline for most people but they came quite easily for me as I never did like much sweets and deep-fried anything.
So much about diet and weight loss, I can't say enough the importance of some sort of exercise for everyone. I walk because of a serious personal conviction to survive and cope with my health issues. Yet one does not need to step on the pavement because of a health issue. Walking is cheap--all you need are comfortable shoes, warm clothes, sun-block and may be music. No membership fees and all the other fancy trimmings of a health club. Walking is natural. Everyone walks. Walking is by far the most holistic of all exercises and when done regularly with proper eating habits, one can expect miracles.
Now, put on your comfy shoes, wear a visor, take your house key, and hit the pavement, everyday. Just do it!!!
Thursday, November 3, 2011
Walking past 150 miles…..and Mt. Whitney
I don't know about you, but nothing makes me feel accomplished and content until I am satisfied with the results of my own efforts, however long it takes.
It was a sunny, early August day in 1976. In honor of USA's bicentennial, a group of us decided to go on top of a tall mountain and plant the Stars and Stripes--our national flag. There were 8 of us driving from San Francisco to climb Mt. Whitney in Southern California. All the sleeping bags, food supplies, toiletries and miscellaneous items were carefully checked and re-caclulated to ensure our survival during the climb and back.
I had been in this country for about a year then and was not inducted into the grandness of these United States of America and her natural landscape as well as beauty. I had just finished my 150th mile jogging the week before preparing for this hike to 10,000 feet above sea level.
About 2 hours into the climb I turned around during our recess and my jaw dropped! Why are we still at the bottom? The 7-mile hike should be a cinch, but no, very soon my chest was heaving and the feeling of being stabbed over and over by a sharp knife would not relent. More breaks, more rest stops. The elevation was getting to all of us. Nature was flaunting the power of height and the thinning of oxygen. We were aching, feeling slithered and almost totally defeated by the mountain and the lack of air!
After lunch some of us were discouraged. We were all in great physical condition and were proud of our prowess as jocks. We needed no guide on this mountain because we WERE GOOD for it. The eery afternoon was silent. I heard only the struggling breaths of myself and my climbing party. One foot forward, then another, and another. A little light came into our quiet despair around 2 p.m. We saw the peak and we were half way there. I ached so horrifically all over and the nausea had begun to interfere with ability to breathe. None of us gave in to our inadequacies, we'd rather die!
Around 8:30 p.m., we looked at one another and let out the loudest cry! Yes, yes, yes, yes! A lot of crying and laughing, even weeping came over us. We were high. We were standing on the peak of Mount Whitney--10,150 feet above sea level. Then as if we had rehearsed, we all scurried and scattered and found a quiet spot alone in this peak and started "zen-like" personal, private meditations. 9 p.m., 14 hours after we set foot on this mountain, the sun had set almost completely, our collective hunger warranted a strike on this exquisite moment of personal reflection.
I recalled crying by myself in joy: recounting and retracing the agonizing steps through the entire day. I wrote in my journal and I quote,"Is there anything more precious to me than the over-whelming content feeling of accomplishing something well with all of my efforts?"
Stepping out to walk to fight pain 7 weeks ago was not a flippant or temporal idea. It was a conscious and deliberate attempt to try to ease my physical pain. It was my last-straw effort in the fight of a savaging illness that has robbed so much of my life. I gave walking no chance to fail. And it can't fail. The journey of these past 150 miles was wrought with great risks and a massive amount of gnawing pain those first days. I am starting to reap the benefits of high levels of endorphin and my pain is under my thumb and my feet, literally. My walking now reminded me of our Mt. Whitney hike 35 years ago.
What lied ahead 35 years ago after we reached the top of an enormously tall mountain was the cold, dark night; and of course, the descent the following day. On that dark mountain and ice-cold night I was again face-to-face with the unfathomable power of nature and my own vast limitations in every turn. It's a miracle we all made it down the next day. The encounter with Mt. Whitney had a profound effect on the 8 of us. Somehow we emerged from the mountaintop different, perhaps we were worn and weathered a bit, just a bit, no more cockiness. We piled into our vehicles in total exhaustion as well as sweet contentment heading north, singing most of our way.
The feeling of content accomplishment has no fanfare and needs no audience and applause. It is absolutely silent and private. I am there.
It was a sunny, early August day in 1976. In honor of USA's bicentennial, a group of us decided to go on top of a tall mountain and plant the Stars and Stripes--our national flag. There were 8 of us driving from San Francisco to climb Mt. Whitney in Southern California. All the sleeping bags, food supplies, toiletries and miscellaneous items were carefully checked and re-caclulated to ensure our survival during the climb and back.
I had been in this country for about a year then and was not inducted into the grandness of these United States of America and her natural landscape as well as beauty. I had just finished my 150th mile jogging the week before preparing for this hike to 10,000 feet above sea level.
About 2 hours into the climb I turned around during our recess and my jaw dropped! Why are we still at the bottom? The 7-mile hike should be a cinch, but no, very soon my chest was heaving and the feeling of being stabbed over and over by a sharp knife would not relent. More breaks, more rest stops. The elevation was getting to all of us. Nature was flaunting the power of height and the thinning of oxygen. We were aching, feeling slithered and almost totally defeated by the mountain and the lack of air!
After lunch some of us were discouraged. We were all in great physical condition and were proud of our prowess as jocks. We needed no guide on this mountain because we WERE GOOD for it. The eery afternoon was silent. I heard only the struggling breaths of myself and my climbing party. One foot forward, then another, and another. A little light came into our quiet despair around 2 p.m. We saw the peak and we were half way there. I ached so horrifically all over and the nausea had begun to interfere with ability to breathe. None of us gave in to our inadequacies, we'd rather die!
Around 8:30 p.m., we looked at one another and let out the loudest cry! Yes, yes, yes, yes! A lot of crying and laughing, even weeping came over us. We were high. We were standing on the peak of Mount Whitney--10,150 feet above sea level. Then as if we had rehearsed, we all scurried and scattered and found a quiet spot alone in this peak and started "zen-like" personal, private meditations. 9 p.m., 14 hours after we set foot on this mountain, the sun had set almost completely, our collective hunger warranted a strike on this exquisite moment of personal reflection.
I recalled crying by myself in joy: recounting and retracing the agonizing steps through the entire day. I wrote in my journal and I quote,"Is there anything more precious to me than the over-whelming content feeling of accomplishing something well with all of my efforts?"
Stepping out to walk to fight pain 7 weeks ago was not a flippant or temporal idea. It was a conscious and deliberate attempt to try to ease my physical pain. It was my last-straw effort in the fight of a savaging illness that has robbed so much of my life. I gave walking no chance to fail. And it can't fail. The journey of these past 150 miles was wrought with great risks and a massive amount of gnawing pain those first days. I am starting to reap the benefits of high levels of endorphin and my pain is under my thumb and my feet, literally. My walking now reminded me of our Mt. Whitney hike 35 years ago.
What lied ahead 35 years ago after we reached the top of an enormously tall mountain was the cold, dark night; and of course, the descent the following day. On that dark mountain and ice-cold night I was again face-to-face with the unfathomable power of nature and my own vast limitations in every turn. It's a miracle we all made it down the next day. The encounter with Mt. Whitney had a profound effect on the 8 of us. Somehow we emerged from the mountaintop different, perhaps we were worn and weathered a bit, just a bit, no more cockiness. We piled into our vehicles in total exhaustion as well as sweet contentment heading north, singing most of our way.
The feeling of content accomplishment has no fanfare and needs no audience and applause. It is absolutely silent and private. I am there.
Monday, October 24, 2011
Walking in the Sun and….
Most lupus patients know they are not to be in the sun. I am no different. Sunlight is vital for the survival of humans and other life forms. How can this wonderful energy source be such a menace to lupus patients?
I was severely sunburned in early 1986 and it exacerbated and precipitated the onset of my lupus. I was the lucky "unlucky" one. Lucky that I got a quick diagnosis; unlucky that I had a fulminating systemic involvement of multi-organ slaughter. My life changed in an instant from a healthy young teacher, wife, runner working 3 jobs to an abrupt halt with a scary future. I was told that my survival for 5 years was guarded--not exactly comforting, nor reassuring. That made the saying, "when life gives you lemons, make lemon-aide", so very lame.
The first year of my lupus was full treachery and uncertainty. Nothing improved and more problems would surface every other month. However, nothing prepared me for the second year. Severe chest pain ended up being pericarditis. During the over a month-long hospital stay my kidneys failed and white count (white blood cell count) plummeted. Kidney biopsy, bone marrow biopsy, chest X'rays, scans, and the daily 4 a.m. blood draw was my life for over 40 days. Talk about the valley of the shadow of death--there were numerous valleys that nearly buried me.
So back to sunlight, why is it a no-no for many lupus patients? Some theories suggest that the UV radiation in sunlight alter the skin cells microscopically, just enough that the body mistake the "changed" and circulating dead skin cells as enemies to trigger an inflammatory chain reaction. Naturally the human body fights enemies by launching, among other mechanisms, the inflammatory processes. Here's the catch in a nutshell: these altered dead skin cells are NOT enemies and the flawed auto-immune inflammatory process is simply destroying healthy body tissues resulting in fever, pain, destroying organs along the way, causing swelling joints and tender soft tissues. And these lupus complexes ultimately lodge themselves in kidneys and damage the glomeruli (kidney cells responsible for filtering). You can only imagine the worst! Few lupus patients are not affected by UV in sunlight. Their immune systems are sensitive to different stressors.
What do I do when I am walking in natural elements--the sun? I wear a sunhat, a huge UV guard visor and thanks to Neutrogena's 100 SPF cream on my face and neck, long sleeved shirts, and hand gloves. I am all bundled up. There are several lines of UV coated clothing and REI them carries in stores. I order mine online. In addition, I start as soon as the sun comes up. Today was 7:07 a.m. I need the sunlight to see the pavement. I walk for about 2-3 hours daily and once a week 4-5 hours.
There are no easy solutions to living and walking with lupus. Many people take life and nature for granted. As a lupus patient and suviver, I can do neither.
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