One Patient's Positive Perspectives

Posts tagged ‘CNS lupus’

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!

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Separating Systemic Lupus from Traumatic Injuries

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Separating the Injury Claims

When a lupus patient has an auto accident, work comp injury, or some other personal injury where an accident insurance claim may be involved, sorting out treatment and claims can get pretty tricky.  Personal experience with these type of insurance claims provided some perspectives about working with doctors to sort out each new injury, and distinguish it from previous injuries and chronic illness.  The most recent auto accident that happened makes dealing with several issues fresh all over again!

Years ago, two different injuries resulted in insurance claims.  First, an auto accident followed a few weeks later by a fall down stairs at work.  Communication was the key to sorting out the differences between injuries.  Now, a recent auto accident was followed by a trip and fall at the shopping mall, and the same approach is needed once again.

Granted, with auto-immune illness, there are always many days with pain and discomfort, but new injuries seem to make coping even more difficult.   Day by day it has taken patience through the recovery, meanwhile remembering to ask God for the grace to be able to refrain from too much grumbling.  This too will pass, and the Bible says that the rain falls on everyone, so the storm becomes a little personal.  The new traumas also caused lupus to flare for several weeks.

Because of ongoing medical problems from chronic disease, communication with a doctor after a traumatic injury is very important.  Providing very complete, specific, and accurate information helped doctors and employers understand new symptoms and distinguish accident-related time off work.  Although several past accident injury claims were unfortunate, a few personal kernels of reality and wisdom emerged from the experiences.  While clearly not legal advice (which would be extremely unethical for this non-lawyer to provide), these personal observations may give some helpful insight to others patients with chronic illness who are facing a similar accidental injury situation.

A doctor will finally understand it is lupus

Communicate Well with Your Doctors

Three foundational, if not simplistic, realizations:

  1. Only medical problems clearly a result of the accident injury were covered by any of the claims.
  2. Unchanged pre-existing medical problems were not part of the injury insurance claims. (Obvious but worth saying)
  3. Flares of of pre-existing medical problems clearly triggered by the injury were able to be included in the claims, but only to the degree this diagnosis was included in medical records statements that supported how the autoimmune illness had worsened after the accidents, and because of the accidents.

Four conversations throughout various stages of recovery that it helped to chat with the doctor about:

  1. Asking what percent the doctor thought recovery from the first accident was reached, right after the second accident happened.  This helped establish a milestone in the treatment that we would work our way back toward during recovery from the second accident.
  2. Asking the doctor about how they thought injuries from the second accident were different than the first.  It helped when the doctor compared and contrasted between both injuries, and this gave clear information to use talking to both insurance companies.
  3. If the doctor doesn’t mention the idea, suggesting the concept to the doctor of a “window” in the recovery from the first accident while the second accident recovery was in progress.  This helped work with both insurance companies to make clear agreement about who was paying for what and when.  This helped the first insurance company know what to expect, and to realize they would be resuming responsibility for medical treatment costs after the recovery milestone was reached.
  4. Asking about total recovery in percentages after resuming the treatment just for the remaining first accident injuries, helped keep things straight with the insurance company.  Ongoing conversation about status of recovery with the doctor and claims adjuster helped keep everyone’s expectations and timelines clear.
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June 14th is Flag Day – Happy Birthday, Sis!

After having a couple of previous injuries, three serious car accidents, a work comp fall down stairs on the job, and two slip and fall injuries, personal experiences helped clarify the impact of an accident injury on overall lupus condition and general health.  It seems that if both adjusters and doctors had not been part of the conversations during recovery, proving diagnosis of increased lupus activity due to the traumatic injury would have been much harder.  It seemed better for everyone to be involved in ongoing discussion about the degree pre-accident health had be reached.

Of course, with lupus or any autoimmune disease, there is no “back to normal”, but with good communication, it can become clear when near “normal” health was regained.  Each day, no matter what it brings, is a glorious new day to be alive, what ever “normal” ends up being.

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!”

Lupus Adventures in Advocacy with Lupus Sisters

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Breakfast of Lupus Champions @TiffanyAndLupus @LAlupuslady @LeslieRott and @LupusAdventurer (taking pix)

Sharing stories and coffee we nibble and smile,
while catching a quick bite to eat.
All kindred spirits fighting for health,
if only our foe to defeat!

We strive and endeavor to get the word out
and tell anyone who will hear
Awareness of facts each person should know,
information to replace their fear.

WP_20150512_001Each of us bloggers and advocates strong,
we gather with purpose as one,
We’ll talk and discuss issues we know so well,
informally we’ve already begun.

A few minutes later we join all the rest,
in the summit we’ve come to create,
With meeting of minds, a free flow of thoughts,
and messages we each came to state.

For just a few hours, we gathered together,
a great combination of voices we were,
Relationships strengthened in this rare adventure.
If only there could be a cure!

Short of that miracle, so much can be done
through research and tireless care,
Joining perspectives and wisdom diverse
by patient advocates with personal flare!

Our voice will be different, more united and strong,
after meeting together today,
What once was just virtual has leapt into life,
after meeting in this wonderful way.

Encouraged and enthused, still striving on
to reach out to every life we can touch,
Advocating, writing, and partnering together.
Alone, we could never do as much!

Lupus Adventurer
© May 2015


Edited in Lumia Selfie

Lupus Adventurer and Sarah Gorman at GSK Lupus Summit

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Leslie Rott @LeslieRott

#GSKsummit Lupus Summit

#GSKsummit on Lupus @shanelleG @LeslieRott @LAlupuslady @LupusAdventurer @cmswrites @TiffanyAndLupus @marlajan @despitelupus

A very special thank you goes out to Glasko Smith Kline for sponsoring the May 12, 2015 GSK Summit on Lupus — #GSKsummit , and inviting  lupus bloggers to join in this precedent-setting lupus event. Note to Reader: GSK provided reimbursement for travel and expenses to attend the GSK Lupus Summit.  However, this post is voluntary, represents my own views and I was not paid to write it, nor asked to promote GSK or its medicines.

Back to school a little late with lupus

Road sign saying College Just Ahead

Returning to College

Returning to college after a 34 year gap has been an exciting adventure, and after the finish of the first class, the jury is in with a verdict.  This IS possible, even with lupus.  Finding an adult degree completion program that would work with lupus was essential.

Early morning college classes were not an option, so traditional college was out of consideration long before planning to going back even started.  Planning activities in the morning with lupus is never a good idea!  There had to be a better way.

College fund label on glass Jar full of dollar bills

Figuring out the funding

When a program was located that would honor all the work put in over four years of college, split between two schools, and make the most of it to complete the degree, I was glad.  The second college started an adult degree completion program a year ago, and they began sending out emails.

After figuring out the logistics and funding, the day finally came for registering and signing up on the dotted line!

College library books on shelves in the stacks

Plenty of work, but no exams!

It was finally time to go back to school, and it was both exciting and a little scary.  An unexpected blessing came on the first night of class in January, when the professor announced there were no exams!  A brain, sometimes impaired by short-term memory problems from lupus, heard that news and did an exuberant back flip!

What could be better than that?  Lots of books to read, awesome!
Major research to do, how fun. Lots of papers to write, bring it on!
Presentations to make, even better.  But, no exams? Absolutely perfect!

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A thing or two to learn!

Now, class number two is already underway, with one down and 13 more to go after this one.  June 2016 does not seem too far away and with prayer, some amazing support from my husband, quiet lupus, and the grace of God, graduation will be 17 months from now.

In between, there might be a thing or two to learn!

The brain fog moment and lupus crossed wires

CNS lupus involvement

CNS Lupus strikes unexpectedly

Just when you would like to hope and think it is gone forever and never coming back, lupus brain fog and crossed wires show up again, unexpectedly.  It is not that the head is not on straight, it is just that sometimes, just for a moment, it is unclear what week or day you are in, or what subject you just wrote an email about.  Recently, several similar projects overlapped in the same time and space, and it was a sure prescription for a mental mishap!  While finishing up interviews for one vacant job, new applications just started coming in for another.

Here is where the confusion starts.  Keeping the two recruitments straight was a mental quagmire.  The call was placed just a little too early on a Monday morning for the normal state of my “lupus brain,” and a group of questions were asked and answered as I spoke with an applicant’s work reference.  All throughout the call, it seemed odd how much all the answers were describing skills and abilities that fit the other open job, perfectly!

Too early on Monday

Returning to my office to re-do the form

After filling out the title of the position on the required form for Human Resources and filling in answers in the comment areas, I signed it.  It was then I realized things had gotten a little murky.

Walking over to my assistant’s desk, I began explaining how unusual it was that the applicant seemed to fit the other position, but not the one she had applied for.  My assistant looked up at me with a very quizzical look, explaining that the answers fit the position that applicant was seeking!

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Crossed wires!

The sudden realization hung heavily in the awkward moment, as humility stepped forward, compelled to admit to a mental crossed wire.  Reclaiming the form, and returning to my office to redo it, the correct job title and all the answers were copied into a new version.  Now, the applicant seemed to fit the job perfectly, and even qualified for a second interview.

It is amazing what a little central nervous system lupus can do when you least expect it!  It might even inadvertently alter the course of someone’s career, if not kept in check by a good assistant, not afraid to say, “what are you thinking?” when it is needed most!  A good assistant is hard to come by, and no, you cannot have mine!

Lupus and the grief experience, the next chapter

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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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