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Lupus in a Victimless Life – Despite Limitations

Series: Lupus in a Victimless Life

Butterfly on yellow daisy

This is the second discussion in a series about being a Lupus patient or someone with any chronic illness, without becoming a victim.  Society tells us we are victims of the things that make life difficult, but do we really need to see ourselves that way?  No, not even for a minute!

Having Lupus should not mean being victim or powerless against it.  Although we cannot choose whether we have Lupus, determining not to be its victim is matter of mindset and even a choice.  When special events or activities in our life disrupt our normal routines and schedules, it becomes very important to be on guard for signs of physical or other stress.  Stress or fatigue may signal increased risk of bringing on a flare of lupus symptoms.

WP_20180502_18_45_00_ProA recent trip to attend a business conference was an excellent example of this type of self-management that often minimizes the impact of potential lupus flares.  Recently joining about 1,000 peers from all over the nation at an educational conference in Washington, D.C., we gathered at a large resort on the Potomac River for five days of classes and continuing legal management education.  With breakfast starting very early, and classes going all day long, by sunset, everyone was tired.  There were many extra steps going to and fro from class to class, and every situation and conversation was a new experience.  This type of event interacting with countless people and ideas easily causes both physical and emotional fatigue.  This conference was no exception.

Hands Holding Book ReadingSelecting how to best spend the free time in the evenings included a wide array of choices, from dining with old and new found friends to taking shopping trips, going on walks, taking in local entertainment.  The conservative choice was spending the night quietly in a hotel room reading a book or eating a takeout meal, while resting with feet propped on a pillow.  Predictably, most evenings were spent pursuing a sedentary evening that helped prevent over-exertion, while also promoting restoration necessary before the next day’s demanding schedule.  Wisdom is listening to the physical needs of your body, and recognizing without angst that lupus narrows those limits.  It seemed the best idea was the wise one.

WP_20180503_20_03_18_ProBut, of course, a little fun, within physical limits was necessary!  One night, opting to accept the invitation to take a sunset walk with attendees from our local chapter sounded fun!  Midway through our jaunt, it suddenly seemed best to sit and rest midway while the others in our group explored shops at the bottom of a long, long flight of steps heading down toward the shore.  At complete peace with self and lupus limitations, skipping the stairs was an instant no-brainer.  Besides, it was a great opportunity to do some great people-watching.  When everyone else reached the top of the stairway again and reunited our group, we finished the second half of our twilight stroll through the remaining street level shops near our hotel.  The activity was pleasantly enough, without being too much.

Despite the Limitations of Lupus

LA Blog Wordle 2013The onset of Lupus clearly changes a person’s life, sometimes very dramatically.  Whether their presenting symptoms are arthritis, rashes, or perhaps a more serious aspect of Lupus, their life definitely changes.  Often, many lupus patients experience fatigue, pain, and other symptoms long before they ever receive the diagnosis.

After learning that Lupus is the cause of their medical problems, a person often has a great sense of relief, as well as hope that things will improve.  The average patient experiences Lupus symptoms four to six years and sees up to the same number of doctors before getting a clear diagnosis of Lupus.  Many describe the great sense of relief they feel after finally getting a one word diagnosis to describe their collection of multiple medical symptoms.

Doctor with clipboard 2With the diagnosis comes the welcome change of a decisive treatment plan and prescriptions for well-established treatments to help control the lupus.  Often the counsel from doctors and other knowledgeable counselors encourage changes in lifestyle and attentiveness to recognizing physical limitations.  Each lupus patient has their own unique set of symptoms and circumstances influencing their quality of life, despite lupus.  In the same patient, flares of their Lupus may suddenly narrow those limitations and frustrate their life goals and plans.

Over work or inadequate rest can quickly bring on extreme fatigue and lupus flare, so it is critical to learn to perceive physical, psychological, and spiritual signs of weariness, and then to take quick actions to retract the limits temporarily to quash or prevent an oncoming flare of lupus.  For many patients, the onset of extreme fatigue is the first symptom as a flare is starting, so becoming intentional about managing social commitments and activity in balance with physical stamina can go a long, long way to minimizing the length and severity of flares, when they do occur (and they will!).

doctor talking with patientLiving within the limits of Lupus may involve a strict regimen of medications, laboratory tests, and medical appointments, along with costs that that restrict a household budget.  Moderate physical exercise can help increase the physical limitations by encouraging good circulation and promoting tissue health and repair.  Adequate sleep becomes invaluable in fighting many of the affects of lupus, and can diminish some of the morning mental clouding that many patients experience daily.  Communicating with the rheumatologist becomes very important if arthritis or neuropathy pain disrupts sleep, and being willing to ask for and take pain medications can be essential to fighting the negative effects of lupus.

bf resting on benchAll in all, we can choose to make the most of what we have, despite lupus, and accept that lupus may make our life and limitations different than others.  Take a the time to you need to slow down, without letting this need frustrate you.  In the stillness of those quieter moments, focus on the blessings around you, and determine to embrace your limitations rather than becoming a victim of them.  Perhaps consider these thoughts penned by Paul of Tarsus, who also had a life-long chronic illness but embraced the ideas that his weaknesses and limitations were a blessing.  He wished his illness would go away, but he was no victim!

stock-photo-woman-reading-the-bible-in-the-darkness-over-wooden-table-277354922“For this thing I besought the Lord thrice, that it might depart from me. And he said unto me, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me. Therefore I take pleasure in infirmities, in reproaches, in necessities, in persecutions, in distresses for Christ’s sake: for when I am weak, then am I strong.” 2 Corinthians 12:7-10, KJV

 

 

 

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Lupus, the inertia effect, and my valentine

thEGJELUGJAlthough true for everyone, every lupus patient personally understands this truth: a body at rest tends to stay at rest, and a body in motion tends to stay in motion.  The physical science behind the laws of inertia may not be exactly simple, but they are clearly understood by lupus patients.  A sedentary lifestyle is effortlessly easy to maintain, while changing from a body in at rest to one in motion can be an incredible challenge.  Looking back at the past two years of concerted effort keeping college studies moving with great inertia, it seems other areas of life hopelessly succumbed to a lack of motion!

bathroom scaleWith the accelerated rate of scholarly efforts came an equal and opposite effect on physical exercise and healthy home-cooked meals.  Weighing a full twenty pounds more than two years ago, the lack of inertia impacts several rooms in the house: the bathroom scale registers twenty pounds more, clothes in the closet are two sizes larger, and food in the kitchen lasts only half as long on the shelf.  Too much fast food in too much of a hurry did not help this high calorie, nearly exercise-less existence.  Alas, exercise and healthy meal planning take time.  More time than there was to spend while attending college.

Energy-conserving dinner prep for lupus patients!In efforts to reclaim a healthier lifestyle, a newly restored relationship with the kitchen has been growing again.  The smell of real food in the house, heavy on light, fresh, whole foods and light on the oil, sugar, salt and other forbidden non-fruits of the grocery store processed food isles.  We are also rediscovering the purpose of the dining room table, and the fine art of dinner conversation.  This certainly is a vast improvement to fast food distractingly munched under gaze of a watching computer screen’s light.

As we look at tomorrow’s Valentine’s Day, it was a pleasure to have the time this year to thoughtfully contemplate and purchase a card and small gift bag full of my sweetheart’s favorite surprises, without simultaneously feeling a frantic pressure from struggling with a choice between study and shopping.  Over these two years, he has been an amazing encourager and support, as he single-handedly held down the home front by shopping, cooking, cleaning, and (yes!) doing laundry. College would have been impossible without him!

valentines-day-love-heart-romantic-heart-butterflyA gift bag awaits the morning in the fridge, positioned right in front of the coffee creamer on the shelf.  When he gets the cream to pour into my cup of coffee, there it will be for him waiting to greet him with a, “Happy Valentine’s Day” for me, while I am still struggling in bed with the fog of morning lupus brain.  Every morning he wakes me with a cup of coffee in bed.  This man deserves some very special love and appreciation!

 

Bring me a lupus infusion with epidurals on the side

Valle Luna Phoenix thEOGYSE51A recent “date night” found us sitting in a quiet booth while the waitress approached the table with a warm welcoming smile.  The Friday night dinner rush was over by our 8:30 arrival, and we had only waited a few minutes for our table.  Earlier, she assured us, was pretty zany at this local authentic Mexican restaurant we had all but forgotten about in recent years.

Tired some of our usual dinner spots, a return to the casual charm of this unpretentious eatery was long overdue.  The decor had not changed in the decade or two since our last visit, but it really didn’t need it.  Part of its southwest charm is the rustic feeling of being just over the border from Mexico, while really eating dinner right in the middle of Phoenix, more than a half day drive north of the border.

Valle Luna Phoenix BestWhile notably absent this evening, it seemed there might still be a faint echo of the mariachi band that had once strolled between the tables during dinner hour.  Amused while studying the menu for tummy friendly fare, a chuckle was stifled while considering my possible order.  Over the past few weeks, life had indeed served up a new menu of possibilities and adventures.

What would I like today with my lupus?  Well, how about a double dose of doctors, a lupus infusion, and a little Lumbar epidural on the side?  Seriously, the mild enchiladas, rice, and beans hit the spot quite nicely.  We enjoyed some quiet small talk over dinner while reviewing events of the day, and contemplated the long-awaited relief achieved by recent procedures that treated a nagging herniated disk.

Butterfly OrangeWith a total of three epidurals over the past few months, there was finally relief from the unwelcome companion of low back pain and leg muscle spasms.  After several months where the need for pain killers (tramadol) became increasingly frequent instead of episodic, it had become clear the chiropractic treatment we tried was woefully inadequate.  So, after visits to three different doctors there was a new personal record, as a little lupus treatment was sandwiched between some “minimally invasive” spine treatments.  Each epidural required a day off of work, sedation and a full day to rest and recoup.  With each of three treatments, the intense pain of sciatic leg cramps and low back pain subsided to more tolerable levels.

Mexican Valle Luna Phoenix thFDZH2OZYIt seems that Lupus alone is quite enough, but when other medical issues overtake a lupus patient, the combination of other medical difficulties and challenges can threaten to overwhelm even the strongest of souls.  It seems this is just the right season of life to be thankful for quiet lupus biomarkers, and be grateful for the blessings of relief from many months of intense pain.  Monthly Benlysta (belimumab) infusions have controlled lupus well.

Thankful to be out enjoying the “date”, and thankful for relief from pain, our Mexican fiesta, without the side dish of screaming pain was delicious!

Separating Systemic Lupus from Traumatic Injuries

insurance-claim-form

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.

Check Your Lupus Awareness and Play the Lupus Game at Lupus.org

Know Lupus Game My Score 100 PercentPlay the Know Lupus game online… and earn donations for answering awareness questions.

Try to get through both levels with 100%  It was fun, so check it out and spread the word to others to check out this fund lupus awareness activity at the Lupus Foundation of America site.

Play:  The Lupus Game and see if you can beat the challenge!

 

GSK Lupus Summit, Philadelphia, PA

Edited in Lumia Selfie

Charlotte, NC Airport

All day was spent traveling from Arizona to Philadelphia… three airports, two flights and a taxi ride.  Sitting here in the hotel room, the view includes the GSK Corporate offices next door, and the 76er’s and Eagles’ sports complex.  This is a great time to kick up heels and unwind before looking for some dinner.

Taken with Lumia Selfie

Boarding for Philly

GSK had a welcome packet waiting at hotel front desk, in preparation for tomorrow’s GSK 2015 Lupus Summit — #GSKsummit — and it seems the other bloggers have not yet arrived.  It will be great to meet some of the other participants who have been social media “pen pals”.

The updated list of participants in the welcome packets includes lupus bloggers with these Twitter addresses: @marlajan, @ShanelleG @despitelupus, @LAlupuslady, @lupusguru, @TiffanyAndLupus, @cmswrites, @LupusChickcom, @LeslieRott, @QueenofSpain, and of course, “moi”, @LupusAdventurer.

Looking forward to tomorrow’s adventure.  Follow us tomorrow on Twitter.

Lupus adventures through life’s stressful events

Hands of Woman Using Laptop Computer

Shut down a little early

Off to class, but not quite making it

A stressful event has just occurred, and once the dust has settled and the adrenal rush quiets down, next comes the inevitable question.  Will my lupus flare?  Traumas, losses and major life events have an effect on everyone experiencing them, but the impact can be more intense for someone with an autoimmune disease like systemic lupus.  Only time will tell, but I will do what I can to help prevent it.

Earlier this week, like every Tuesday night, when 5:00 p.m. arrived, the computer at work shut down a couple of hours ahead of normal schedule, and a current project file stashed into a waiting tote, along with cell phone and a note or two about calls to make from home the next morning.  atypically time conscious on Tuesdays, the quick dash to my parked PT Cruiser takes three minutes flat.  The seat belt “clip” sounds at 5:05 and soon the little PT  is off and rolling!

http://www.google.com/imgres?start=149&hl=en&newwindow=1&tbo=d&tbm=isch&tbnid=XwwXgvq2Gv2pxM:&imgrefurl=http://www.helpowl.com/a/Chrysler/2007-PT%2520Cruiser/Research/1674%3Fsearch%3D2007%2520chrysler%2520pt%2520cruiser%2520radio&docid=vtKW39tYMB_CSM&imgurl=http://i3.ytimg.com/vi/iWetDLKDHRs/hqdefault.jpg&w=480&h=360&ei=QzCfUOb1CY7UigKm9oDABQ&zoom=1&iact=rc&dur=6&sig=110339196146817075919&page=6&tbnh=142&tbnw=179&ndsp=31&ved=1t:429,r:72,s:100,i:220&tx=66&ty=-145&biw=1600&bih=646

Need gas before crossing town

On schedule, but alerted by a sound from the gas gauge, the little PT must first head off toward a gas station on the way to the outer loop freeway.  With plenty of time to spare for the stop, it feels good to be on schedule.  Soon we, driver and PT, are merging onto the highway, on our way across town for a 6:00 p.m. degree completion class.

The Bluetooth cell phone speaker rings on the visor.  My boss calls for a quick conversation about the status of a pending job offer to a prospective employee.  That done, thoughts turn to the leadership topics we have studied at school, and the joint presentation my group will complete tonight.  We are nearly ready to present it to the class next week, and just need a little more time after class to tweak content and coördinate our plans.

Silence, sounds and a sigh

thPKJKPD6G

Still gripping the wheel

Leaving the radio off, the silent noise of my thoughts is plenty of company.  Up ahead, lanes are full and alarmingly tight with traffic.  Suddenly, the PT brakes must slam down very hard and fast, quickly stopping behind the forming traffic jam.  After a little controlled skidding,  we came to rest a safe distance from the car ahead.  The sighing thought forms in silence, “It is a good thing my little PT likes hanging back from the crowd of cars ahead, so there was room enough to make this urgent stop.”

The jarring sound of metal on metal instantly shatters the silence, and a millisecond later overwhelming force pounds through my body from behind.  Still gripping the wheel, startled and shaken, awareness shifts to assessing emergent issues in a mental checklist: 1) am I okay? 2) get out of traffic 3) how bad is it? 4) how is the other guy? 5) call 9-1-1.  By the time I got to the end of my checklist, I was in the emergency lane, out of my car for safety’s sake, leaning against the barrier, and put down the cell phone when I looked up at the other car and realized highway patrol was already on the scene.

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Grateful it wasn’t worse

A little bumped and shaken (okay, a lot), and very frustrated missing my college class, I was just grateful and thanking God it wasn’t any worse. Stinging, quickly tightening  muscles in my back, neck and arms made it clear that going to class was no longer in the evening’s plan.  After the officer pushed the man’s disabled pickup to the emergency lane behind mine, we answered questions and the officer returned to his patrol car with our licenses, insurance information and vehicle registrations.

Both drivers turned to cell phones to reach out to family, and in my call to contact my professor. The officer returned, offered to call paramedics for me, and held out a printed preliminary police report to me, and still holding the other copy in his hand, told me I was free to go.  I heard him turn the gentleman that hit my care and start what sounded like a more intense conversation.  I presumed to give him a traffic citation for causing the accident.

Back in the saddle, sort of

th7E7HHMLJ

Headed to emergency room

Back in the saddle, and merging back into traffic and exiting the freeway, the side streets seemed the most welcoming route home.  My house was only five minutes away, so after driving with much trepidation, arriving home was a relief.  I met my husband at home and he took me to the E.R. for a check up.  After my spine x-rays were reviewed they gave me a muscle relaxer (Flexeril) and instructions to take Ultram for pain.  I took the next couple of days off from work to rest and let my hurting neck and back recover.  The day after the accident, the man’s insurance company contacted me to assure me they were accepting full liability, and would take care of my car repairs, a rental, my medical expenses and any other impacts from the accident.

We are unable to choose what life or traffic throw at us, but we can do what it takes to care for ourselves once it does.  After a couple of days resting, I sat down at the computer and sent my two papers to my professor by email that were due to turn in the night I missed class.  While resting over the weekend, the next thing was to finish writing the last paper for my class that ends next Tuesday night.  The project presentation my team is giving on Tuesday was almost ready before my accident, so I am grateful we did not procrastinate on the project, so that I was able to fully rest when I needed it most.

going to work

Let’s be careful out there!

The rental car will delivered early Monday morning, and then it will be back to work for me.  Life moves on, trauma or not, so we slide back into the groove of daily life pretty quickly in the wake of life’s bumps and bruises.  Perhaps because of the lupus, we can take these minor setbacks a little more in stride, after learning resilience from the stuff lupus throws at us on an ongoing basis.  Just like lupus, so too with car accidents.  We cannot pick the traumas and challenges we will face, but we can be grateful for what is good in our lives, and make the best of what is, without worrying too much over what we do not have or may have lost along the way.

And meanwhile, let’s be careful out there!

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