MUSIC vs. PAIN

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Now, always have a song in your heart! 

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

Pain is Ephemeral……As it should

Pain is ephemeral….. as it should

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

1.  Dictate life

2.  Destroy self-esteem

3.  Errode faith

4.  Derail hope

5.  Disintergrate friendships

6.  Defect reputations

7.  Delay successes

8.  Dessicrate humanity

9.  Deaden love

10. Dash away tranquility

11. Daunt confidence

12. Defile beauty

13. Deduce self-worth

14. Degrade morale

15. Deface the essence of self

16. Defunct utility

17. Demean dignity

18. Delude minds

19. Deprave humanity

20. Decry justice

21. Derogate laughter

22. Devastate the soul

23. Deteriorate the body

24. Detain goodness

25. Diffuse joy

26. Dilute excitement

27. Dent pleasures

28. Discard purity

29. Displace eternity

30. Dispel goodness

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

WE DO! 

May's first orchids!! 2012

Walking, or Not?? On Water??

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

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

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

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

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

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

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

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

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

The Walking Infirm….to walking affirmed ☀

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

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

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

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

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

"Nice blouse, from China?"  She asked.

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

""Still fits?"  She hummed along.

"I guess so!"  I murmured likewise.

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

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

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

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

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

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

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

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

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

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

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

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

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

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….".

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!

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!!!!  

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.