One Patient's Positive Perspectives

Today was hair day!

Today was hair day, and there was a two-part plan!  First, it was time once again for the every eight week ritual of shampooing, hair dye, scissors, a blow out and great conversation during the session of hairdo taming and transformation.  Despite lupus and the handfuls of hair in the drain after every shower, there is a lot of thick hair left for the stylist to work with, arguably a lot more even than most people without lupus.

So, because of all that over abundant hair, there is a lot to dye, cut and dry. Time in the salon usually is measured by half-days and not just a couple of hours, but always at least three hours.  It takes a patient hairdresser like Rosa to handle the work diligently, especially after our recent shift to thicker oil-based hair dye.  It takes longer and requires smaller sections of hair for coloring the roots properly.

Manicure recovery time!

Today, since it was Christmas week, the hair appointment stretched on into a visit the nail tech Stephanie. Pulling out a personal bottle of shimmering red polish from my purse, and requesting a basic manicure and polish change to replace chipping remnants of last week’s manicure, salon time extended yet another hour.

This was nice!  Aching knuckles were soothed by a soak in warm water, followed by a gentle hand massage (by far, the best part of any manicure.)

Emerging from the salon into the adjacent department store, it was now time for part two!  Justifying browsing through the dress section with the need to allow polish to dry and cure before driving home, then set out on foot in the opposite direction from the parking lot.  A safari adventure had just begun, venturing out into the wilderness of a  mall at Christmas!

More than two arms could hold

There were restless natives everywhere, searching through dense racks of hanging garments  Soon, the idea to finish Christmas shopping pulled me on through uncharted expanses of the wilds of sale ridden shops and kiosks.  The natives scurried to and fro every direction around my path, carrying burdens and parcels to unknown destinations and homes.

Finally reaching the oasis of Macy’s department store, soon all the sought after fruits of diligent foraging were added to my sacks.

Eventually, the weight nearly exceeded the load two arms could hold, and with one sack in each hand, they were slung over each shoulder and carried the remaining part of the journey much more comfortably in double back-pack style.  Lupus arthritis began to pull and weigh down each step, and soon feet were dragging along in a weary, exhausted cadence.

Oh no!  The painful realization hit that my car was parked at the complete other end of the mall!  A series of slow deliberate steps led all the way back to the salon and then the car.  It seemed like it took forever.

Safari was over, the desired trophies all stowed in the trunk, and a weary wanderer seated safely in her little car, headed home to a waiting husband and easy chair.

 

Gentle rain fell in the night

Gentle rain fell all night

Outside gentle rain fell steadily all night long, playing its soft mumbling music as lupus neuropathy and sleeplessness led to a first cup of decaf tea. Soon, the cup was cool and empty, and in the dark chill of night, it’s comfort and warming gone.

More cups followed in a cycle of comfort and cooling until the counting was lost and the morning was nearing. Sitting alone on the counter, a white saucer held a half-dozen soggy tea bags and a single spoon.  Then, exhaustion overwhelmed and sleep was at last possible.  Many long days filled with many concerns had also weighed heavily on a mind much too troubled with the cares of life.  Added to lupus and it’s challenges, stress and auto-immunity had taken their toll.  But, at last, there was sleep.

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Soaked grass glistened

A few short hours later, morning came especially hard.  But the outside called, and the yard was unusually fresh and scrubbed by the evening’s showers.  Soaked ground glistened, and the moist lawn was saturated.  The air was crisp, moist and fresh, and filled with aroma of damp leaves and soil.  A chorus of giddy birds filled the cool morning air with vibrant chatter, as their song rose in the peaceful freshness of the morning.

It seemed that for a few moments, time stopped for me to briefly to experience the pleasure of a perfect, peace-filled instant. Gently slipping into the porch swing, leaning back and inhaling deeply, my eye lids closed so all my senses could taste and drink in the delightful morning.  If ever there was true simple bliss in this humble mortal world, it can surely be in simple joy of a perfect restful pause such as this!

Creator

Mighty, caring Creator!

Soon rejuvenated beyond the fruits of my shortened slumber, thoughts of prayer and gratitude formed in my heart and mind.  Such rich blessings placed all around me by the hand of a mighty, caring Creator, just waiting for me to notice and appreciate.

Did He envision the comfort and encouragement such an instance like this would bring?  In His infinite knowledge, mercy and love did He plan for even this single moment’s small blessing?  Who can know a weary heart’s simplest, and also deepest needs.

The God of my undeserved salvation surely does!  In His matchless mercy and kindness, it would seem He planned for providing even simple joys like this!  Prayers of words alone were absolutely inadequate, as in my grateful heart deep emotions mingled silently with unspoken thoughts of thanks.

Chilled air rushed deeply in with each breath, filling the deepest corners of my lungs with coolness.  It seemed within a few brief seconds weariness vanished, and a deep calming rest supplemented for lack of true sleep. Lupus not withstanding, my body felt strong and restored!

The day called

The day ahead called urgently

But then, the day ahead now called urgently, ringing its intrusive alarm to pull me toward resuming thoughts of responsibilities and care.  It promised to be busy and full of much to manage and do, but I was now ready for the schedule ahead.

Perhaps these moments are the reason we build porches, manufacture patio tables and chairs, and spend hours and small fortunes on landscaping and lawns.  We surround ourselves with these iconic items, hoping for snippets of time like this to enjoy ourselves in their midst.  For these precious glimpses of perfectness we plan and prepare.

Lupus and believing in mornings...

Chorus of generations of birds

Yet, it would have been too easy to slip right past this common opportunity, to forget to stop, sit a spell, or savor the beauty of finding this moment of perfect peace.  This is a nearly eternal moment.

Time has not seemed to move one second between stop off points, between the strung out lifelong series of moments like this.  They all seem somehow connected, and that perhaps generations of birds have seamlessly continued the same choral masterpiece, falling long ago upon ears of a seven year-old girl — and who now sits on my porch as a grandma!

Fluttering

Fluttering from dandelion to dandelion

Moments like these are when all seems right with the world, and the soul of a little girl returns to my heart.  Decades — no, half a century — has passed and it seems like that the same little girl who sat in the cool brisk dampness of her mother’s backyard, reveling in the birdsong, moist grass, flowers and earthy fragrance, is here, now.

No time has passed at all, and perhaps she is really the same little girl sitting on this back porch today, slowly sipping the delights of this morning’s fresh washed yard.

She closes her eyes and finds the same pure enjoyment of morning as did the little girl of yesterday who sat wiggling her bare toes in the soothing wet grass of her mother’s breezy back yard, patiently watching a Monarch flutter and float from one dew-kissed dandelion to another.

Both girls closed their eyes and savored their precious gift of morning.

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Virtual Walker

Today, I have an important previous long-standing commitment that has me heading out the door in about 15 minutes, but not to today’s walk.  However, I am going to be a “virtual walker” and will be there in spirit. Today is the big day for the Walk to End Lupus Now in Scottsdale, Arizona. (See my previous post for details.)

It starts at 4:00, so my thoughts will be with the other walkers who are able to attend personally as I head out to other commitments.

You can help support our Arizona fund-raising efforts for the Lupus Foundation of America activities here in Arizona, by supporting me at the donation site:

http://lupus.donorpages.com/ArizonaWalk/LupusAdventurer/

Thank you…

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New Oil-Based Hair Color without Ammonia — No Sting, No Smell, No Rash!

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Image courtesy of Wikimedia license Incomposition Sikkim

We should know not to try to draft a post from a cell phone!  I was sitting at my doctor’s office getting my Benlysta infusion this afternoon with just my cell phone along for amusement.  So, I started trying to write a post I have been trying to get to for a couple of weeks.  I uploaded this picture from my windows phone, taken at a recent hair dresser appointment.  While logged in earlier this evening to finish the post, I discovered that the picture had been posted all by itself, without the story behind it.

Well, perhaps I should finish the post, now, especially since some of you readers have already “liked” it.  That is great faith, liking a post before it is written!

At my last hair appointment, my hair dresser was excited to tell me about a new Matrix hair color that the salon had started using. She has been using a Matrix formula to do highlights and lowlights that covers just the gray roots, about every 8 weeks.  The formula was pretty mild, but still contained ammonia and caused my scalp to burn while it was on my hair, and then afterwards I would sometimes get lupus rashes on my hairline where the scalp was irritated.   It was not uncommon to need prescription prednisone ointment for a few days to keep rashes in check.

So, the new oil-based Matrix formula Rosa wanted to try has no ammonia, and doesn’t smell or sting, and there was no need to sit under the hair dryer.  She explained that the oil in the formula carried the pigment deep down into the hair shaft and bonded to the inside of the hair, making it smooth and healthy instead of damaging the hair.

Rosa and I have occasionally discussed the problems many lupus patients have with perfumes, dyes and hyper allergic response to many chemicals in the environment.

You see me smiling in the picture, because even though with goopy hair dye all over my head, I somewhat resemble a drowned rat, my scalp was not burning nor were my nose and eyes wincing from fumes.  No smell, no burn and afterward… no rash after my hair appointment.

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Meet Rosa!

I updated this post when it was finally finished so you could also meet my hair dresser, Rosa. She has been taking care of my hair at JC Penny’s salon for over a year, and “rescued” my dry damaged hair from previous over-processing.  My sister-in-law introduced me to her, and I have been very happy ever since.

So, this time, she recommended the perfect new permanent hair color for a lupus patient.   You might just want to ask your hair dresser about the new Matrix oil based formula color, “Colorinsider.”  Check out their web site link in the caption of the picture I “borrowed” from them.

I don’t often support a product (and am not being compensated for this in any way) unless I really believe it is something worth sharing with other lupus patients.

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Writing in the darkness of midnight

What gets put aside during grief?

Sitting down at my desk and writing seems like such a simple thing to do.  Writing has become an essential part of me. But, lately, life has been getting in the way!  Keeping up with my full-time job in a government law office, keeping house, keeping a husband fed and keeping track of all the details in my life has consumed me.  Adding the grief of losing a parent to the mix compounds the challenge and impacts of a busy life with lupus.

What continues to get pushed aside?  Writing!

So, while my husband is already tucked in for the night and emitting sonorous tenor songs of slumber, I sit alone at my desk basking in the pale light of the computer as it casts a gentle glow into the otherwise darkness of midnight.  Not really alone, I guess, since you are here reading, joining me in the written frozen moment of time.  As I write, I am thinking of you, my reader, and what I might share from the recent days or even this moment to help or perhaps encourage you.  Perhaps in these words you will find a common experience to something you are journeying through, and perhaps by me explaining my present reality, you will be strengthened.  I find it helps to understand someone else’s similar journey, to help me feel that I am not alone.

 Thinking more about mortality

Lupus in a complex lifeI find myself thinking more about my mortality, praying as I move about, talking to God about what I am thinking and feeling as I drive around in my car and move through my day.

I think about the fact that both of my parents are now gone, and that this has instantaneously made me a part of the oldest generation of my family.  Suddenly losing the first parent, my mother, was a very different grieving experience than what I find myself passing through now.  This is a loss of everything that was the idea of my parents, as the couple and team that nurtured, shaped, loved and guided me through the first half of my life.  They are my first memories, they were my source, anchor and shelter from the beginning of my being.  They loved me unconditionally, although imperfectly, and I was always one of their five precious children.

Grieving slows the pace of life

My parents loved each of their children with a unique and customized relationship, and encouraged us to find our own personal path and calling.  My siblings and I were very blessed to be their children.  Now, they are both gone, and we are here without them.  Life will move on, but not just yet.  Grieving slowed the pace of moving forward with life, causing me to pause and linger in the memory rich time of this great loss.

Now, it seems the state of being an orphan has come.  Neither  destitute nor abandoned as I am blessed as an adult to have an established life and family of my own.  An orphan, nonetheless, but not as the state of child orphans so often can be in the loss of their provider and shelter, but finding myself an orphan of the heart.  My heart misses the fellowship and love that will no longer be shared with them.  I mourn the idea of “them.”

I think mourning has stressed my health and at times causes flares of my lupus.  Yesterday was a an especially bad day, gnawing bone deep pain in my legs and arms interrupted my routines and  forced me to stop and rest.  In contrast, the day before was a great one, as I was talking about how I felt my health was on an upswing.  Today is somewhere in the middle, as I am finishing this in the morning, after a few more hours of sleep were finally captured.

Probate adventures in patience

Photo by LA's Daughter-in-Law © 2013

Photo by LA’s Daughter-in-Law © 2013

This past few weeks I have worked diligently on the probate matters for my  father’s estate.  I am the executor and have the job of marshalling his assets, paying his final bills, filing his estate taxes and distributing the proceeds of his remaining life savings.  Knowing that I will be able to sign a sizable check and mail it to each of my siblings as a last act as executor of the estate is a pleasant outcome of the loss I am still grieving.  The whole “marshalling of assets” project has become much more time-consuming and difficult than I ever imagined!

About a month after my father died, and after the probate was filed by my lawyer, the letters of appointment as Executor arrived from the court.  So, I set met with the personal banker at the bank where most of my dad’s money is held. The meeting lasted for hours, as we reviewed different CDs, accounts and broker investment details and the banker was on the phone and communicating online with their legal department in New York.  Once the process of converting accounts started, it took four more weeks to get the money moved into a new estate account. Many phone calls, emails and meetings were  required before the estate account was funded.

Paying my father’s bills

I was waiting to pay my father’s last bills to his residence facility, doctors, dentist, pharmacies, and other miscellaneous final expenses.  The smallest of these was the fee due to the on-site hair/nail salon, and this one was so impatient they kept calling and sending emails, threatening to send the bill to collections for the mere $60 owed to them!  I told the persistent woman she would need  to be patient and wait, and after each encounter would hang up the phone and sigh.

When I spoke with my lawyer about her, she and I rolled our eyes and laughed together over the absurdity of the woman’s impatience to collect such a small sum.  So, when the money finally was available, I sent out a check immediately for the balance due, including late fees, along with a thank you letter for the services they provided to my father!  I just felt compelled to choose the high road.

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Sunday 11-16-2014

Walk to End Lupus Now – Rescheduled!

After being flooded out by the remnants of September’s hurricane and tropical storm, the Lupus Foundation of America has officially re-scheduled the Arizona Walk to End Lupus Now!

The event will be held on Sunday afternoon November 16th, at the same location it was originally planned:  Scottsdale Center for the Arts, 75th and Main Streets, Scottsdale, Arizona.  Registration will begin at 3pm, and the walk will start at 4pm.

If you want to register for the Arizona Walk to End Lupus Now, please visit the updated website new event date and information.  You can sign up new teams or new team members, submit online donations or team fundraising dollars online at www.walktoendlupusnow.org/arizona.

Please join the fight against lupus!

If you are a reader who would like to help, please sign up with me as a virtual walker, and join Toni Grimes’ team like I did.  My previous commitments keep me from being able to attend the walk on the new date, but I am going to participate in-absentia.  You could do this too!  Even if you cannot go the to an actual walk location, or cannot walk the physical course, you can still be a virtual walker in our Arizona event or in a walk event in your community.  Just make sure that people you ask to donate know that you are not going to attend or if you are not physically walking!

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I almost forgot the butterfly! Added in a post update…

 

Or, perhaps it would be awesome if you could make a small donation to support Lupus Adventurer for my virtual walk effort, or my team as a group.  Donations can be made online, or checks may be mailed with a donation form ( click here ) to:  Lupus Foundation of America, Attn: Walk to End Lupus Now – Arizona, 2000 L Street, NW Suite #410, Washington, DC 20036.

Support the AZ Walk to End Lupus Now!

Support the AZ
Walk to End Lupus Now!

Walkers that raise at least $100 are eligible for some great incentive gifts that LFA will provide to walkers either at or after the event.  Last year, my husband and I received T-Shirts and an amazing golf umbrella!  As of this weekend, Arizona Walk to End Lupus Now has received over $64,000 toward the 2014 goal of $100,000.

Click Here to Donate!

10-26-14 Newsflash Update:

Please see the new post about the rescheduled Arizona Walk to End Lupus Now.  Click Here to read more.

Last Year's AZ Walk

2013 AZ Walk to End Lupus Now

Arizona Walk to End Lupus Now Update – RAINED OUT

The only thing predictable about lupus, is that is it unpredictable!  So it is with the monsoon weather in our warm desert southwest climate! Without so much as consulting the Lupus Foundation of America, the last major monsoon storm of the season hit our area, fueled by left overs of a hurricane moving north into Arizona from the Baja gulf.

The Arizona Monsoon rained on the LFA parade!

After recently struggling with the decision, I resigned from LFA’s Arizona Advisory Council and Walk Committee.  I was losing balance and trying to do more than my type A personality in a type C body could handle without hurting myself.  With grieving the recent loss of my father, plus dealing with the probate of his estate, while also trying to keep up with my health and the professional demands of my law office, I have been in my own “flash flood” of overload.  Something had to go, so I finally determined to step down from my LFA commitments.

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Grandma and kidlets at Grand Canyon

After also making the very difficult decision to opt out of this year’s walk, my husband and I learned we would have visiting out-of-town family all week.

Our son, daughter-in-law and four grandchildren had a sudden opportunity to take a week’s vacation and travel to Phoenix to spend it with us.  Then, we heard later that day that the walk was rained out!  Somehow it softened my sense of conflict a little to know that if I had gone, it wouldn’t have happened anyway.

Now, I am hoping that by the time of the next Arizona walk, my personal life will quiet down a little and I can plan once again to attend!

LFA Letter to Arizona Lupus Community

I think you might really enjoy reading an except of this week’s wonderful letter from Dana Woldrop and Zach Feuerherd and the LFA national office:

Dear Arizona Walk Supporters,

Thank you so much for your support of the Lupus Foundation of America!

As you know, we were forced to cancel the festivities at the Walk to End Lupus Now Arizona event this past Saturday at the Scottsdale Center for the Arts. We were absolutely heartbroken that the day could not continue, but with 75 mph winds, extreme flooding, power outages, and roads closed, safety for you and our volunteers was our first priority. A portion of our walk route was actually underwater!

We want to send out a heartfelt thank you to our many volunteers who braved horrendous conditions to help us set up, protect our materials and tents, and then clean up. Our walk committee absolutely went above and beyond in both planning the event, and working alongside us in miserable weather on Saturday. We were touched and inspired by the many walkers that came to the event site even after it was cancelled, and stayed to help and visit with other walkers.

We realize the need to have a day where Arizona lupus patients and their caregivers can come together to celebrate the work that has been done to raise money for lupus research, increase awareness of lupus, and rally public support for those who suffer from its brutal impact. We are working on a plan for a get together before the end of the year, where we can honor our top fundraisers and committed volunteers,  learn more about the services and resources available, and have fun! We will be in touch with details soon!

We are so thankful for your generosity…as of this morning, we have raised over $63,000.

Maybe next year!!

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