One Patient's Positive Perspectives

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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!

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!

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

thankful moments

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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Portland-bound at 20,000 feet

Writing on a phone

A couple of hours ago I started writing on my windows phone from here in Portland, where I have been visiting for three days on business. Not yet comfortable with using the blog app in miniature, I couldn’t figure out how to save the nearly blank post as a draft. After getting to the airport and sitting down to finish the post, I realized it had posted as just a title and was my shortest post here yet.

I was surprised to even get some likes with just a title! That takes a lot of faith to give me thumbs up without it being written yet, sort of like getting an advance on an unwritten book. With that response it is worthy of finishing.

Writing in the Airport

Writing at the airport, on the runway and at the baggage claim

So, here I am finally writing it for real while I wait at the gate for boarding. When I flew out to Portland earlier this week, the plan included arriving plenty early ahead of the 3:00 pm start to the professional educational conference. My husband dropped me off early, and the morning was spent in transit.

Part of my advance travel planning always includes scoping out ground transportation options and street maps of the area I am visiting. With lupus arthritis it is important to consider things like how long the walk will be if I want to use public trains or busses to get to my hotel. Also, I try to plan not to arrive after dark in a strange city, and feel less vulnerable finding my hotel in day light.

Writing on the runway

Now on my plane headed home, we are waiting to take off on an oversold flight, and I was grateful to be the next-to-last person to get on the plane.

When I get home, I will finish and update this post, since I haven’t yet figured out how to save in draft.

Writing from baggage claim

Now with feet on the ground and waiting for my husband at the airport, I reflect on the challenges of travel with my auto-immune companion. Watching out for fatigue, skipping the night life … More later…

Writing from a phone, again!

Later, actually much later still using my windows smart phone, since my husband was rearranging the office and took the internet down while I was out of town.

This may end up my first unillustrated post in more than three years of writing… Writing on a mini app is one thing, but dealing with images that way is just too much for me.

Writing from home, sweet home

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View from the air over Portland

After trying to compose this on the fly (pun intended) it has become obvious that my home office is my most truly inspirational place to write.  No distractions, interruptions or half-constructed sentences.  So, with the Internet back up and my computer re-connected to cyberspace, now I’ll try to finish and go back and fill in a couple of details.

To attend a business law conference in Oregon, I flew out Thursday morning last week, and arrived in Portland by late morning.  I happened to meet the only other Arizona attendee at the airport, Andrea, and we boarded the train at the airport station.  Our lodging was diagonally across an intersection from each other, so we connected for several educational sessions and shared a couple of good meals during the conference.  After finding out we both have chronic health challenges, we coordinated a similar approach to our conference attendance.

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Court house and clock tower near my Portland hotel

Arriving with enough time to comfortably check into the hotel and grab a light lunch, we stopped by the conference registration table and arrived at the first session at 3:00 that afternoon.  While some attendees may enjoy night life and partying when they attend professional conferences, that’s just not a lifestyle that fits into my brand of lupus adventures.  When I travel alone, I pretty much stay in at night, and spend my days in meetings and evenings quietly in my room resting up for the next day’s demands.

The last night of the conference, my new friend Andrea and I enjoyed excellent lasagna dinner and home made gelato, all prepared from scratch by the chef in my hotel’s Italian restaurant.  The next morning’s classes began early, and we were done by noon.  The night before, I arranged for late check out, so I would not have to drag my suitcase around to my morning classes.  I had an hour to leisurely change into travel clothes and pack up before check out.

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Train crossing over the river on the way back to the airport

Trying to check in and get a boarding pass from the hotel lobby online ahead of my flight, I learned my flight was oversold, and would have to check in and get my boarding pass at the airport.  Setting out immediately to catch a train back to the airport, I started writing this on the small screen of my phone.  Clicking thumbs of text, started two days ago waiting at the at the train stop, with my feet propped up on my suitcase.  The return trip included a great view for snapping a quick shot from the bridge.

Throughout this business trip, my lupus and writing about this adventure joined my new friend Andrea as a trio of friendly travel companions.

Reflection
Taking time to reflect on grief

 

Keeping up with a very busy life along with having lupus is always a huge challenge, and takes planning, consideration and careful management to prevent becoming spread out too thin.  Always mindful of sudden flares, and cautiously navigating within ever-changing boundaries is part of the lupus journey and adventure.

My life is usually very full just managing family, career, lupus, music performances and my writing.  Before my dad passed away, at least four other major things were also in the mix:  participating in a local Lupus walk planning committee, some ongoing major home renovations, a couple of highly stressful and unusually challenging work projects, and participating in a Benlysta clinical trial of weekly self-injections.

These extra things meant plugging in plenty of extra goals and activities.  Honestly, I thought I could handle it all.  Adding the clinical trial recently meant more doctor appointments and follow ups, and planning my weekly injections and filling out the simple patient log.  A year ago I had signed on with my Lupus Foundation contacts to build a walk team and contact a group of local professional contacts to promote the upcoming walk.

Our home renovations have been slowly moving along, but the stress of a household in flux that adds some psychological chaos and stress to the mix.  Then, just when the heaviest portion of the major work projects was in full swing, my dad died on Friday, July 4th.

When eternity knocks, life stands still.

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Plant from coworkers

After dealing with mandatory arrangements in the first few hours after he passed away, I had no choice but to call in to  work out for a “time out.”  It really didn’t matter what other work responsibilities I had, nor even how important any of it was.

First things first, my life ground to a halt.  It was time to erect a temporary protective perimeter so I could stop, slow down and start to cope with grief.  Without apologies, I called my office to start there and speak with my boss about taking bereavement leave the following week. My major work project was immediately put on hold until I got back to work.  This was horribly untimely for work commitments, but I was so grateful for the support I received at my office for my need to deal with my loss.

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Returning to the office

A week later when I returned to my office, one of the most difficult emotional and mental tasks I have ever undertaken was to focus through my grief and complete my professional writing responsibilities.  I still had to finish a complex and heavily analytical major report.

There was no way I was anywhere near over my grief after only the first week had gone by, but I had to exercise extreme discipline and force myself to work through it and complete the huge project.  There were major legal issues involved, and the project was not something that could wait more than the week’s postponement or be delegated to someone else.

I had regained barely enough objectivity to be able to do the writing task, but it took twice as long as it would have if I had not been in the middle of the extreme emotional distractions of grief.  In all honesty, I really just wanted to check out of all my responsibilities for the next few weeks and go sit by a pool somewhere with my thoughts and drink lemonade!  Consequently, every half hour or so, I had to throw up my hands in emotional surrender and  stand up and walk away from my desk.  Each time I took a mental break and allow my heart and mind to reset I was able to sit down again in a few minutes and focus for another session.

It felt like my efforts on the writing project were actually unwelcome thirty-minute recesses from processing my grief.  I am not sure how, but it got done, and we finally completed the difficult drawn out project.

My highest priorities have sorted out and family, conversations with siblings and people in my inner support circle, and dealing with dad’s financial and legal affairs have taken obvious precedence.  Life stood still for a few days during a week of bereavement leave, and then after the big push to complete “the project,” many mornings in the following few weeks were borrowed from my normal work schedule to slow down, deal with emotions, take care of family things, meet with bankers, lawyers, government agencies, funeral directors and handle other urgent family business.

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Hired a probate lawyer

Quickly, without any hesitation, a lawyer was hired to handle the probate of dad’s estate.  Although I started out my career as a paralegal and worked in probate for three years, I wouldn’t think about doing the legal stuff myself.  Even with my lawyer handling all the court paperwork, I have many duties as executor of his estate.

Wow!  These details are consuming!

Although I have drafted hundreds of wills, trusts, probate court documents and deeds of distribution in my career, I have never seen an executor’s side of the process.  I already knew what my attorney had to handle, but my side of all this probate business is a new experience.

Taking time to pray

Taking time to pray

I have found there just isn’t time for some of the things I had set out to do before my dad died.  I am making a point to take time to think about what I am going through, and to talk to God about my feelings and grief.

I often remember the last day and the hours I spent at my dad’s bedside reading the Bible to him, and Psalm 23 was one of the last things I read to him.  The words spoken to him hover in the backdrop of my memories, and that last conversation and prayer  as I sat beside him.

Writing, Lupus Foundation activities and even little personal things like taking time to go get a manicure and pedicure have been brushed aside without a moment to consider how to do them!  I am finding it hard to sleep, and have been sleeping in too long in the mornings after I don’t sleep well.

Today, I finally made it to the hairdresser for a color (I should say “cover”) and cut. One by one, my habits and routines are being re-established.  Grief and loss are still there, but the wounds of grief heal slowly.

Stress of loss

Stress of loss

The stress of loss

Losing a loved one is hard on everyone, and it seems we can never be ready for it.  Over fifteen years ago mom passed away unexpectedly, and now my dad has gone after a four-year battle with Alzheimer’s.  Although I thought I was adjusting to the idea, and in a way I was already grieving the loss of my father as I knew him before Alzheimer’s, it feels different than I thought it would.

It is just difficult any way you look at it.  When people you love are gone, it leaves a vacuum where a warm loving soul once was in your daily life, and it hurts.  With a deep ache beating in your chest, your heart sobs in silence.  Pain is stressful, whether the cause is physical or emotional, and that stress has predictable influences on health.  Stress can weaken us physically, weaken our immune system, or aggravate an auto-immune disease, such as lupus.  Sustained stresses like grief, stretch out their load on the normal endocrine balance, that is already somewhat out of whack when a person has auto-immune disease.

Fight or Flight

Fight or Flight

The part of our body chemistry that produces a surge of helpful chemicals to sustain us during a fight-or-flight situation or crisis, becomes very strained during periods of prolonged, sustained stress.  This crisis mode response can only continue for limited time, while glands pump out “emergency” help.  After a while, a body’s chemical response to continued stress becomes weaker and weaker, and the person experiencing sustained stress has a seriously reduced ability to cope in the face of continued pressure.  For someone with lupus, ongoing presence of stressful situations become the perfect environment for lupus to flare.  So, it becomes especially important to communicate well with our doctors about the major life events we are experiencing and about how these stressors are impacting physical health.

The storms of life

The storms of life

The storms of life

Over the years, many helpful articles about employees going through life’s most stressful events have passed over my desk in human resource magazines and legal management journals.  Usually they merit at least a few minutes of my attention, since employees routinely drop by my office, sit down with a sigh opposite me, and start to talk about the major events taking place in their personal lives.  Sometimes, employees have multiple stressful events raining down on them at one time, and some face virtual storms of stress, and even rarely an occasional emotional or spiritual hurricane!

My heart goes out to these burdened co-workers, and I privately pray earnestly for them, because I know personally how hard it can be to cope when flood waters of stress wreak havoc and bring unexpected mayhem.  It is no wonder these overwhelming events are commonly called “the storms of life.”

Stress affects people physically

The different responses people show to these events get my attention, and often I’m motivated to start a conversation about what they are experiencing.  Ever since reading an article years ago about how stress affects people physically, I have been especially focused on how it impacts employees, friends and others in my personal life when they go through unusually stressful circumstances.  What I see most often is employees who struggle with either the severe illness or death of a family member, face surgery, are moving, their spouse has lost their job or they are having turmoil or difficulty between members of their household.

I too, have had my share of these stressful situations, and some of these have triggered past lupus flares and at times some lasting escalation of lupus severity.

Measuring the stress of life’s events

Measuring Stress

Measuring Stress

A couple of research psychiatrists, Thomas Holmes and Richard Rahe, studied over 5,000 people to understand better how stress affects health.  They developed a time-honored list of the most common stressful life events that people routinely face, assigning a “stress score” to each type of stressful event.  The total score falls into one of three basic ranges of impact.  People with lupus or any other auto-immune disease may easily find that their stress score indicates a moderate or high likelihood of illness.  The items on the list may seem obvious, but reviewing it was thought-provoking for me.

Striking up a conversation about the effects of stress on people who are going through rough times usually starts by mentioning that they are experiencing one or more of the major stressful life events on “the list:”

Life Event Stress Score
Death of a spouse 100
Divorce 73
Marital separation 65
Death of a close family member 63
Imprisonment 63
Personal injury or illness 53
Marriage 50
Dismissal from work 47
Marital reconciliation 45
Retirement 45
Change in health of family member 44
Pregnancy 40
Business readjustment 39
Gain a new family member 39
Sexual difficulties 39
Change in financial state 38
Death of a close friend 37
Change to different line of work 36
Change in frequency of arguments 35
Major mortgage 32
Foreclosure of mortgage or loan 30
Change in responsibilities at work 29
Child leaving home 29
Trouble with in-laws 29
Outstanding personal achievement 28
Beginning or end school 26
Spouse starts or stops work 26
Change in living conditions 25
Revision of personal habits 24
Trouble with boss 23
Change in residence 20
Change in schools 20
Change in working hours or conditions 20
Change in church activities 19
Change in recreation 19
Change in social activities 18
Minor mortgage or loan 17
Change in sleeping habits 16
Change in eating habits 15
Change in number of family reunions 15
Vacation 13
Christmas 12
Minor violation of law 11
TOTAL EVENT RELATED STRESS SCORE:

Add up the numbers of stressful events that apply to you in the past two years to get your own score: _____

th3SLP7QUMHow might the level of your life stress be likely to effect your health?  If you are a lupus patient with active disease (53), high medical costs (38) and have lupus affecting your ability to keep up with recreation (19), your social life (18), and pain keeping you from sleeping well (15), you could easily have a score over 140.  Add just one more event on the list, like moving (2) or getting pulled over for a traffic ticket (11) and you have a moderate risk of illness.

Score of 300+: At risk of illness.
Score of 150-299: Risk of illness is moderate (reduced by 30% from the above risk).
Score <150: Only have a slight risk of illness.

Read More about the Holmes and Rahe Stress Scale @ Wikipedia.

The speech about stress

Down-to-earth advice

As the manager of a government legal department, when an employee goes through these rough times, one of my roles is to approve sick leave, bereavement leave or vacation, or to encourage them to otherwise take care of themselves.  After pointing out that they are going through one of life’s most stressful experiences, the advice is usually down-to-earth and pretty simple: 1) breathe, 2) drink, 3) sleep, 4) rest and relax.

Why?  Breath deeply, because so often people seem to psychologically hold their breath during intense stress, and deep cleansing breaths help reduce the effects of stress.  Drink plenty of water because it helps the brain function, supports the immune system and flushing out toxins from the body (usually I am the one who goes around offering glasses of water to everyone.)  Get enough sleep and rest, because stress is exhausting and emotionally fatiguing, and lack of sleep just increases stress even more.  If proper to my relationship with the person, I also suggest prayer, Bible reading and hymn singing in the times when sleep just doesn’t come, because finding spiritual rest through these alternative activities can help in the absence of sleep.  Rest and relax, because they need to be reminded to give themselves some slack and to realize that what they are going through is a normal human response to stress, and to be expected.

thRTKMIR17Every new employee we hire gets a similar version of this speech as part of their orientation, along with explaining that almost every employee we have hired in the past 25 years (except one exceptional person who either listened especially well to my advice or was just an rare physical specimen) became sick within their first month on the job.  Every employee gets the speech again as a friendly reminder, every time they go through something on the top half of the list, or any combination of things from anywhere on the list.

This type of stress seriously affected my health many years ago.  Just one week after my mother died, my father and I both visited his doctor to treat our severe bronchitis.  Grief and bronchitis do not go well together!  During the year that followed, I was naturally still grieving deeply, and that normal process had its impacts on my body and my lupus.  Within a few weeks after losing my mother, I was hospitalized with a ruptured abdominal artery, infected appendix and ruptured ovary (a very close call!) and within six more months my spine destabilized around an old trauma (and required neck braces and neuro rehab) while my lupus escalated to organ (CNS) involvement.  Within just one year of mom’s death I had graduated from treatment with only plaquenil to requiring adding weekly methotrexate, daily high dose prednisone and Imuran (azathioprine).  For ten more years, my medications never could be rolled back to the earlier levels, and eventually even those would no longer control my lupus.

Four resolves in grief

So, it is time to follow my advice.  My hope is that as I now grieve my father’s death in the coming weeks and months, the advice repeatedly shared with others will ring in my own ears and hopefully may help me remember to grieve healthfully.  These are my four resolves…

breathe

Breathe, hydrate, sleep, rest and relax!

First, I will breathe!  Taking long draughts of air, in and out, deep and full, inhaling, cleansing, body-calming breaths.  I will take my asthma sprays on schedule, and listen for my body telling me when it is having trouble, and I will make a point to intentionally breathe.

Then, I will hydrate, hydrate, hydrate.  Easy to say and harder to do.  But now, there is no fluid better for me than the cleansing goodness of pure, refreshing water.  I will carry it with me in the Arizona heat as I drive around, at home or work pour another glass often, and even set a timer if necessary to remember to drink water.  Eight ounces every hour, would not be too much water!

Next, sleep is the hardest resolve to carry out right now, but I will keep working at getting the sleep I need.  Since lupus robs me of so much sleep when I wake up in the middle of the night with pain, this takes some extra effort.  Yet, I am promising myself to make the most of my opportunities to sleep.  This means I need to replace my broken c-pap machine as soon as possible, since I fall asleep faster, rest better and wake up less often at night when I am using it.  Using my c-pap for my sleep apnea helps reduce fatigue, and that’s a good idea, especially now.

Last, I know that prayer, Bible reading, singing hymns and playing them at the piano are forms of worship that can become a bridge to real rest.  When I simply cannot sleep, I will turn to these until I get exhausted enough to fall back asleep, and in the process find a different kind of peace and rest.

When emotional or physical pain robs me of sleep, there is no place like the shelter of the Most High to calm and comfort my weary soul!  In the shadow of His wings, I sing for joy!  Even in my grief, even in the valley of the shadow of death, I will fear no evil, for thy rod and thy staff, they comfort me.  These were some of the last words I read to my father from the Bible a few hours before he left us.

Now, they speak peace and health to my heart as I grieve and remember.

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