One Patient's Positive Perspectives

Posts tagged ‘Arizona’

Lupus in the light of a rainbow’s promise

wp_20170123_16_24_13_proOften, many days go by when looking outside at the nearby trees is overlooked.  The cold rainy day had soaked everyone as they made their way to the office.  Lupus grumbled loudly as aching joints and stiffness responded to the damp chill penetrating the office.

The thermal glass was much too thin to block the deep chill penetrating the wall.  The storm blanketing the mountains to the north with deep layers of winter snow brought a biting chill to our arid desert valley below.  Pelting rain struck the office balcony and trees below, as the sky gave a message of promise read by everyone standing there in awe.

320px-Butterfly_sikkimDark gray clouds hung heavy in the eastern Arizona sky as a billowing contrast to the brilliant brush stroke arc of colors swept across the sky.  The southern clouds even carried a faint echoing hint of a barely perceptible second bow.  Standing where an outstretched hand could touch the drenching rain, the combination of invigorating chill and the intensely beautiful sky snapped away the lethargy of the  aching rainy day.

wp_20170123_16_23_49_proRemembering the story of the first such rainbow adorning Noah’s sky refreshed a keen awareness of God’s many promises spanning the ages: never to flood the whole earth again, His Word delivered through holy men of old, the birth of a Savior, and the cross and resurrection that promise new life to those who believe and receive Him, and even now the promise of forgiveness and mercy while adventuring toward a heavenly future home.

With a heart full of these thoughts, today’s rainy day aches of Lupus were somehow dwarfed under the shadow of grand colors of promise hung over skies of history.  A deep cleansing breath and lingering sigh were the only utterance that really described the sight.

The duties of the day soon called out the time to go back inside and into the office kitchen, where a fresh cup of hot coffee waited to warm and nudge persistently back toward the reality of waiting duties on a desk inside. The image of that gorgeous sky evoked thoughtful quietness as I sat down again to view the distractingly beautiful scene outside my office window.

Lupus and Listless Grocery Shopping

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We certainly don’t need tomato sauce!

We could stop right there with the article title and begin delving into the woes of shopping while listless, weary, and exhausted from lupus.  But, that sounds way too depressing!  With your permission, our musings can head in a different direction.  This idea is little about fatigue and completely about trusting my memory!

Recently, my husband consented to go along on a trip to Costco to buy many giant-sized packages of groceries to feed the five grandchildren (and their mom and dad) who are temporarily living with us.  Then, a quiet little “how can I possibly do that” panic overtook me when he responded, “okay, let’s go right now”.  There was no shopping list, and I didn’t have time to write one!  What mattered most was having a willing cart pusher and muscular package lifter to help.

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Yes, there’s Plenty of Mustard!

Shopping listlessly (is that really a word?) with lupus is never a very good idea, mostly because of the well-confirmed short-term memory failures in my past.  Listlessness made me too likely to purchase items already on my shelf at home while forgetting to buy the things that are needed the most.  With my short term memory in a somewhat challenged state due to impacts of CNS lupus involvement, shopping with a well thought out list is usually a much better idea!

A nifty high tech solution suddenly popped into an otherwise not so clear brain.  Why not go through the kitchen and just take pictures of what IS in the cupboards, and then check the pictures on my cell phone if we cannot remember whether we need an item.  So, my husband patiently waited, smirked and chuckled a little while I went through the cupboards speedily snapping photos with my cell camera, and even held the fridge door for me for my impromptu visual inventory.  So after a quick dash around the kitchen, it was time to set out for some listless grocery shopping.  Had we stumbled upon a great new technique to simplify shopping?  Maybe not, but perhaps we could spend the grocery dollars a little more wisely than without the photos.

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We always need bottled water in AZ!

As we headed out in my husband’s pickup truck, there were a few minutes between home and Costco for glancing at the photos to see what might have been on a list if one actually was written.  Soon, we were walking up and down the Costco aisles filling the cart.  Believe it or not, the “listless method” actually worked well.  During those moments of matrimonial debate about what we should buy, a photo became the final judge.  Why had this not occurred to me before?  There is nothing like virtually taking the kitchen along to remove uncertainty.  In one instance, mustard was at issue, but the picture of an unopened bottle on the shelf solved the question quite nicely.

While it is unlikely list writing will stop completely at our house, perhaps once in a while I will pull out this newly minted approach when time to plan is at a premium.  I can count on the perfect recall of my digital record in those moments when recall by my lupus challenged memory cannot be trusted.  We will put this idea on the “one more use for a cellphone” list!

Lupus Awareness Month, Manicures and Missing Toenails

WP_20141129_15_16_32_Pro (1)Infusion day seemed a fitting event for experiencing Lupus Awareness Month with flare.  With the day spent in a circular junket around town, my little PT cruised from doctor to doctor for treatment for lingering problems from a recent car accident, and then to an annual Plaquenil eye check up.  With two hours to spare, I stopped in for manicure and a pedicure, and had an interesting discovery.Hair curls, manicures, pedicures but no lupus cures...

When the nail tech removed the bright purple nail polish, she noticed that the big toe nail had separated from the nail bed, but without any apparent reason such as fungus or infection.  It appears my big toe nail completely died, and the nail stopped growing several weeks ago.

The salon suggested that trauma during my late March trip and fall at the shopping mall killed the nail.  Perhaps while scuffing knees and straining the ankle, the nail bed base also sustained a hefty wallop on the edge of the cement step or the sidewalk.  The nail salon urged me to show my toe nail to the nurse while at the rheumatologist’s office for my monthly Benlysta infusion.

The verdict,  “Expect to lose the toe nail soon.”  Well, it seems the summer  fashion forecast lacks any nail vanity, and just in time for sandal season.  It will be interesting looking for closed toed summer shoes for a niece’s late July wedding.  What fun!

The infusion was the last planned stop of the full “medical” day.

infusion in handThe afternoon passed in the infusion chair with a monstrous accounting textbook perched on my lap and a fresh yellow highlighter gliding across the pages.

Eventually it was hard to pay attention to studying for my college class.  The friendly chatter of a couple of other patients getting RA infusions was more engaging than dwelling on the accounting formula, “Assets = Liabilities + Owner’s Equity”.  Without asking, it was clear they obviously didn’t want to chat about accounting!

No one does.  The reason is hard to pin down, but no one else seems to get very enthused about chatting about or otherwise dwelling on accounting theory, either!

Returning from East Coast Lupus Adventures

thDDSVWJG3After all the fun traveling from Arizona to Philadelphia for the 2015 GSK Lupus Blogger Summit, life and reality always have their return.  The high point was stepping off the plane 10 minutes earlier than expected and calling on the cell phone to find out my husband was already almost at the airport.  It is so nice when you have those moments that remind you that the one you miss, misses you, too!  After leaving the east coast at noon it was eight when a suitcase and tired girl slipped into the pickup truck.

Hungry and tired, we stopped off at a coffee shop for comfort food, pie and a coke, did some catching up.  A friend was working last night, and waited on our table, and with the sodas, placed a fresh red carnation table in front of me with the gentle explanation, “a flower for you.”  That was sweet and a welcoming thought after a long, flight weary day.  Tummies full and spirits a little revived, we were thankful to be together and soon ready for the last five-minute trip home.

Exhaustion overtook both of us, and after a quick shower blasted away the grime of taxicabs, airports, and airplanes, sleep arrived almost instantaneously.  The night passed nearly as quickly, ending abruptly with the welcome smell of fresh coffee on the bed table beside me.  Leaning on the pile of pillows he tossed my direction from the nearby bench, eyelids drooped off to moments of sleep and husband’s chatter between sips from a warm caffeine-filled mug.

th2C28Z9N0Unlike the night, morning moved very, very slowly, matched only by slow reflexes and even slower murky disconnected thoughts.  If ever there was a day to be tempted to call in sick with my lupus after a trip, this was it.  Unlike the sweltering sauna on the east coast, the Arizona desert morning was unexpectedly crisp and refreshing.  After kissing my husband goodbye in the driveway, the second cup of coffee led me through the house into the back yard’s fresh air and fragrant rose blossoms.

Delightfully, the cool morning breeze invigorated and refreshed, as deep draughts of blustery breeze wakened a sleepy set of lungs, slapping fresh life into the lupus fogged gal walking around the yard in my slippers!  The day began to look suddenly promising and worthy of pursuit.  The refrain actually passed over astonished lips, “Oh, what a beautiful morning!”  What a blessing to be home in my back yard!

Quickly gathering all the loose ends of hair, clothing, keys and a sack lunch, every thing seemed to tumble to the floor as a startling reminder CNS lupus might be a little flared from exertion and travel.  The reality of lupus limitations has a sneaky way of keeping a gal humble.

The commute drive was executed with extra care and attention, followed by a couple of conversations at work with obvious moments of difficult enunciation.  Mild lingering CNS difficulty lasted through mid afternoon, but finally the fog burned away completely.  Eventually, the morning song continued into later afternoon with, “Oh, what a beautiful day!”

Walk to End Lupus Now: Virtual Walking Today

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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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Arizona Walk to End Lupus Now – Rescheduled!

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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!

Scottsdale, AZ 2014 Lupus Walk Canceled – Monsoon Storm and Flash Floods!

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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