One Patient's Positive Perspectives

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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!!

May 3, 2014 Scottsdale, AZ

Scottsdale, Arizona

UPDATE:  SCOTTSDALE, AZ WALK TO END LUPUS NOW WAS RAINED OUT AND WALK COURSE WAS PARTIALLY UNDER FLASH FLOOD WATERS!

The Lupus Foundation of America’s (LFA) 2014 Walk to End Lupus Now for Arizona is coming up in 10 days.  This year the walk will start shortly before sunset, and the evening walk time will allow participants who are sun-sensitive lupus patients to take part without excessive UV exposure.

Although my personal life has interrupted my active participation in LFA activities, I am still excited about the walk but will have to stay home as a “virtual” walker this year, and have joined someone else’s team.  If you are interested in helping, please make a donation to one of the teams or walkers.

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Walk to End Lupus Now

716 donors have donated $39,663.81 so far for the Lupus Foundation of America sponsoring participants of the upcoming walk

If you or someone you know would be interested in coming out to walk at this great event, or even supporting the walkers with your comments or donations, click on the link for more details about how to help or participate:

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

SATURDAY,September 27, 2014

5:00 PM Check-In Opens
5:30 PM Opening Remarks
6:00 PM Walk begins

Scottsdale Center for the Arts
7380 E 2nd Street
Scottsdale, AZ 85251

 

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Quiet moments to read for pleasure

Grieving can be intentional.  After the loss of my father in early July, I have made a point to find a few quiet moments to sit and read a book for pleasure, crochet a small project, go through family pictures, make calls and send emails to family.  I also shed a few tears while reading and re-reading the sympathy cards from family and friends while mulling over the love and concern of dear people who care so much about my loss.

A new idea

Unexpectedly, a few mornings ago an idea appeared: it was time to change things a bit.  Walking through the house into the bedroom, and briefly reminiscing, I knew just what I needed to do.

Tucked away in the back of the dresser drawer for fifteen years was a bundle of cards carefully tied together with a black ribbon.  Setting down my coffee on the dresser, and the stack of recently received sympathy cards that I had just read through, the next thing to do was instinctive. Reaching between layers of folded comfy sleep wear and the last nightgown my mother had given me years ago for Christmas, my hand found the packet in the back of the drawer.  It was tucked away ever since my mom had died unexpectedly in 1997.  Tears welled suddenly fresh in my eyes and heart as I retrieved it.

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Re-reading sympathy cards, now mourning loss of both parents

For the next hour, both sets of cards sat on my lap and had my undivided focus. Without regard for schedule or other obligations, life stopped briefly for mourning and letting my soul cry again.  I re-read sympathy cards from friends and family that had comforted me when I faced intense grief years ago, realizing that some of the friends who sent them were now gone, too.  Bittersweet memories of love and sorrow, void and loss, flooded back while slowing to intentionally mourn my mother once again.  Tears soon turned to prayers of gratefulness for the depth of fellowship and concern shown by these dear concerned people.  Friends, church members, co-workers and distant family had all sent their messages and had prayed for me then, and were expressing similar love and care now with my dad’s passing.

Savoring the beautiful cards and reading each kind personal note, my sorrows fused together as the loss of both of my parents was somehow mingled.  They had loved each other so much in their lives, and so I wanted to love them and mourn the loss of the beautiful thing that was “them” together again, too.  But, I knew it was now time for me to put away the sympathy cards, at least for now, and take one more step forward in my process of mourning. Time to expand my boundaries a little and shift my focus a little more away from my pain and loss, and back out toward the waiting needs of others around me.

Thoughtfully re-tying the black ribbon around the old cards, I pulled out a new ribbon from my sewing cabinet and tied it in a similar fashion to bundle the new cards.  Both precious sets of cards were tucked together back into the place where the old ones had been nestled for years.  They rest now in the back of my dresser drawer, waiting like a memory preciously held but hidden away in a personal, secret place, waiting to be retrieved once in a while and ponder again when needed.

Messages in the cards help me capture the thoughts of love for my parents and the warm care of those who sorrowed with me at their now joined loss.

Allowing space and time to grieve

So, although they both are gone, there still rests a quiet memorial in my heart for them, and a little simple reminder of love and care tucked away to revisit when my heart once again will remember and ache.

By frank wouters from antwerpen, belgium (Flickr) [CC-BY-2.0 (http://creativecommons.org/licenses/by/2.0)], via Wikimedia Commons
Photo courtesy of Frank Wouters, Antwerpen, Belgium

There they will be, always waiting for me to pull out and read, ponder and be encouraged by the love poured out in sympathy from those who cared so much and encouraged me in my sorrow.  There may always be a time when writing, committees, and even important work responsibilities can wait.

A hurting lupus patient needs to remember to re-prioritize when grief or other heavy burdens of life arrive, acknowledge the grief, and allow themselves time and space to cry.  We should let the grief be an important interruption to the normal flow of our life, and let the need to grieve take its necessary place.  Taking time to allow ourselves to grieve is an important part of taking care of our lupus.

My grieving will continue for a while, and will likely take many more months to diminish intensity of the loss.  Mourning is a potent, normal human feeling to be experienced, but not squelched nor repressed.  If not permitted, the pain of grief will still find its way out somehow.

The place of faith in grief

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In grief, remember God

When I lost my mother many  years ago, within weeks my lupus progressed for the first time into an organ-threatening, more serious level of activity and almost killed me.  Although more powerful drugs and an aggressive treatment program has kept it under reasonable control over the last fifteen years, my lupus has never completely digressed to what it was before.  The stress of grieving is a normal part of the human experience, and I believe God can use it to draw our attention to Him, and to help us focus on the importance of seeing our own mortality accurately.

Although my lupus became more severe during my earlier grief, all was not negative.  I grew and gained wisdom from my experience of grief, and I learned to see my mortality in a new light.  Perhaps it made me more aware of the eternal aspects of life, and more focused on my relationship with my Creator.  Sensing our own mortality can foster a strong and humbling sense of worship, especially when we see our own frailty in contrast to our Creator.

Lupus still could have become serious at that time in my life, anyway, even if I had not been going through grief.  Lupus is unpredictable, and the most important thing I can remember about the changes in my lupus severity, no matter what the cause, is that whether I am sick or I am or more healthy, God can help me through the changes in my health.  He can enable me to face and accept the limitations of my disease with His strength, while borrowing His joy on the days my own escapes me.  He is there, upholding me right in the middle of the hard days, too.

Now, I can plan to go forward through this new grief experience without my faith wavering too much, and without excessive fear of future lupus changes I cannot control.  I will try to deal with my grief as honestly as possible, while doing some of the important things I can control, like taking care of myself physically to help optimize my strength.

The impact and season of grief

We must always remember that the only predictable thing about Lupus is that it is unpredictable, and sometimes there is absolutely nothing we do can keep it from getting worse.

To everything there is a season... a time to mourn...

To everything there is a season… a time to mourn…

Even mourning that is “well done” can still be an intense stress that triggers and exacerbates any chronic illness, even Lupus.  We should never feel that if we see increased lupus activity in response to life stresses, we somehow didn’t “healthfully” grieve or cope with new stressful chapter in our life!

Perhaps a flare of symptoms is inevitable, despite what we might try to do to prevent it.  We might just be experiencing the normal logical result of the circumstance we are facing.  The stress of loss of a loved-one or any other major life stress always has potential for triggering a flare of lupus symptoms, or triggering other health problems in any person, healthy or not, due to the natural physical influence this type of normal human stressful experience has on our body and health.

But, now, in the midst of my grief, any attention I give to making sure I am mourning well just might help me stay a little more well, too.  God Himself makes a point of instructing us about grief in the Hebrew poetical scriptures, reminding us that, “to everything there is a season,” and specifically that among the seasons of life there is clearly “a time to mourn.”  So, for this next season or two in my lupus adventure, mourn I will, for mourn I must!

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