One Patient's Positive Perspectives

Posts tagged ‘Health’

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!

 

Lupus Awareness Month, Manicures and Missing Toenails

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

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

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

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

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

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

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

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

Lupus adventures in accidental forgiveness at the side of the road

6fa91cc3b80f7a86a82d5eb745d50704

Softening that first impulse… Stop, breathe, think and pray!

Accidents happen!  For emotional and spiritual health, it is important after a traumatic injury to start by sorting out emotions and clarify the difference between fault and malice.  If someone was at fault due to negligent, careless, or otherwise the unintentional actions causing an injury, for our own health and peace of mind we should try to forgive them. They did not mean to cause hurt, as there was no malice in their actions.

thEHW97T5I

Admitting responsibility

We should not confuse forgiveness with the need to hold others responsible for the results of their actions, but we should understand we will only hurt our own heart and spirit by rehearsing and feeding anger and resentment toward someone who caused our injury.  Imperfect humans cause accidents, and we should see them as simply that.  Imperfect.  Human.

Amazingly and unexpectedly, healing began right at the scene of a recent accident, when the man who caused it stood there by the side of the road, holding out his hand with regret on his face.  Hands were shaken and the lament in his eyes was clearly genuine, his words of apology were real, and his full acceptance of fault meant only one thing.  He was concerned with my wellbeing, took responsibility for his actions, and deserved nothing short of immediate forgiveness.

Toppbild-handshake-Mostphotos-fri-252622-man-and-woman-shaking-hands-with-path

Expressing a response of kindness

Thanking him for his integrity and sincere apology, it was somehow easy to  shake his hand and respond with a message of kindness.  Agreeing the insurance companies would work out the financial issues, our clear understanding was that the gentleman was clearly at fault.  I felt compelled to assure him of the absence of resentment or anger toward him.

As we shook hands again upon leaving, our polite agreement was that it was just an accident, and that it had happened because we are imperfect and make mistakes.  It was a heavy, bumper-to-bumper rush-hour traffic jam, and we were grateful only the two of us were involved.  Accepting this perspective on the situation helped immediately dismiss strong negative emotions and shift attention to thankfulness for the good aspects of the otherwise generally negative experience.  Considering that we both walked away in “one piece”, no one else was hurt, and we amicably communicated at the side of the highway, we had much to be thankful for!

black-butterfly-photography-pretty-road-Favim.com-319704

Bright spot in memory of accident

In the midst of the early pain of injuries, the gentle human connection with the other driver remains now a little glimmering bright spot in memories of the traumatic experience.

Sometimes we feel justified in our anger, but we are not forced to exercise that “right”.  If someone causes injury for reasons such as mal intent, criminal negligence such as drunk driving, over aggressive driving, or road rage, it might still behoove us to show charity of heart and pity them for their poor self-control and lack of wisdom, and not focus the inwardly destructive potency of hatred upon them.

Many times these infractions ultimately put the erring doer in jail, with severe legal punishment, fines, and restitution.  We should choose to let that be enough.  God’s important message to us in the Bible on this issue gives us that better perspective.  “Dearly beloved, avenge not yourselves, but rather give place unto wrath: for it is written, vengeance is mine; I will repay, saith the Lord. Therefore if thine enemy hunger, feed him; if he thirst, give him drink… be not overcome of evil, but overcome evil with good.” Romans 12: 19-20.  The negative emotion of resentment hurts the one who hates more than it affects the object of such feelings.  Just as forgiveness is emotionally and spiritually healing and freeing, resentment and hatred bring a painful grip that hurts and damages the hater more that the hated.

thDRVL3I34

How many times must I forgive?

Jesus said we should forgive our brother that hurts or wrongs us, not only seven times like an inquirer had suggested to Him, but instead we should forgive them “seventy times seven”.  That comes to 440 times!  It seems pretty clear that He did not infer that we should stop forgiving the 441st time someone wrongs us, but perhaps by then we will have well exercised our ability to forgive with reasonable success.

thL96KOAO8While it is impossible to count the number of other people throughout time who have ever lived on the face of the earth, Jesus bore the sins of all of us in His body on the cross, that He might bring us to God.  He offers lasting forgiveness to us, not at the side of the road, but at the foot of the cross.  If we will accept his sacrifice there for our own sins, and receive his offer of love, forgiveness, and eternal life, we can walk away spiritually healed and whole.  The apostle Paul explained, “for the wages of sin is death; but the gift of God is eternal life through Jesus Christ our Lord” Romans 3:23.

The body will heal, although lupus may flare after trauma, that will pass in time.  More important than the healing of our body, or any flares of chronic illness such as lupus triggered by trauma or stress, is the healing of our heart, soul and spirit.  Sinners like me who are saved by God’s gracious undeserved kindness, can choose to extend the healing of simple forgiveness to fellow sinners who happen to collide with them on the roadway of life.  With God’s help, I can, too!

Forgiveness does not happen by accident, but rather it is a choice.  I have made mine, and as a result, am well on the road back to health!

Lupus and the Year of Unseen Adventures Ahead

WP_20141223_03_30_52_Pro

The year before us has promise and hope,
waiting outstretched just ahead,
Month after month, new choices to make,
each day as we rise out of bed.
Where will our road lead, where will we be
when a year rolls around once again?
Will there be progress, victory, growth,
or just stuck where we always have been?

Challenges, true are no easy path,
worth striving to traipse intentionally well,
In sickness and health, whichever shall come,
it’s a marriage of sorts to be ill.
Unwilling partners, my lupus and me,
but still joined at the hip and heart,
Morning by morning, reminded it’s there,
but wishing that it just would depart.

Some choices just cannot be made,
like whether to be an autoimmune me,
But others we exercise with volition and grit,
to make each day the best it can be.
By the end of this new year, we can purpose to say
that we’ve done better at last,
Taking control, living wisely and well,
making the most of the year that’s just passed.

So this day is the beginning of a fresh new walk,
through our adventures yet unseen,
Promising the mixture of challenge and joy.
When its done, what will this year have been?
Hoping, praying earnestly for myself
and for the journeying companions with me,
That God will enable us to triumphantly go,
and not under, but above our circumstances be!

By, Lupus Adventurer
© January 1, 2015

WP_20141223_03_46_28_Pro

Lupus as a business travel companion

WP_20140904_10_07_22_Pro

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

WP_20140904_10_15_18_Pro

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.

WP_20140905_15_17_10_Pro

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.

WP_20140906_13_32_48_Pro

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.

Managing Lupus While Managing Grief

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.

Benlysta for Lupus, the first 1,000 days

thU6SAS42S

1,000 days of Benlysta

This week (yesterday) marked a quiet little anniversary, the 1,000 day mark after beginning monthly Benlysta infusions for Systemic Lupus Erythematosus on August 24, 2011.  So, without pomp or celebration, today begins as day 1,001 since starting Benlysta.  From the beginning, the Benlysta adventure is chronicled here, and a special page indexes all the posts about this journey.

This 1,000 day Benlysta milestone gave me pause to ponder whether there were any other 1,000 day milestones I could  use to compare to this span of time.  A little research led to an interesting group of comparisons, some were serious and some were fun, some were history and culture changing, and some were of fleeting and trivial impact.

1,000 days might be enough to carry out significant change, or long enough to waste accomplishing absolutely nothing meaningful at all. I will let you be the judge, but history will judge with perspective, and ultimately God will always be the final judge.

How long is a thousand days?

1,000 days is equal to exactly 2 years, 270 days (unless one of the years is a leap year, resulting in 1,000 days being equal to 2 years, 269 days. Also, 1,000 days expressed as a decimal fraction is 2.74 years.

1,000 day comparisons

  • thH9WE6Z7AThe approximate length of the public ministry of Jesus Christ from the first miracle in Cana to his death on a cross outside the City of Jerusalem, as documented in the first four books of New Testament, the gospels of Matthew, Mark, Luke and John.  History and life changing!
  • The length of a Columbian civil war (The Thousand Days War) fought between 1899 and 1902 over an ideological conflict between liberals and conservatives that divided families and took the lives of 100,000 Colombians before a mutual cease-fire was reached.  An end to strife.
  • th7SY4JSR2The approximate length of the presidential administration of John F. Kennedy, that lasted 1037 days, from his January 20, 1961 inauguration  to his assassination on November 22, 1963.  A death that shook the nation.
  • 1,000 days from the start of a woman’s pregnancy until her child’s 2nd birthday, a crucial period for proper nutrition that allows children to develop without permanent cognitive and physical delays.  Important beginnings.
  • How many consecutive days a 6th grade boy from Holmen, Wisconsin wore a Green Bay Packer’s player Aaron Rodgers’ jersey, while living in a household of Minnesota Vikings fans.  Much ado about nothing!
  • How long Kate Middleton has been a duchess after marrying Prince William.  She reached the 1,000 days milestone in her marriage and acquired royalty earlier this week on May 20, 2014.  A royal beginning.
  • thSTW4CIIDThe length of time it takes for Landana 1,000 Days Dutch Gouda cheese to naturally ripen, while stored at a closely guarded secret specific temperature and humidity. The fruit of patience.
  • The length of time the famous Schatz 1000 day clocks can run without winding. Schatz 1000 day clocks bear a “54” in a circle on the back of their movements, and were first made in 1954. An engineering marvel for its day.

Lupus before the 1,000 days

My past 1,000 days with Benlysta have significantly stabilized my Lupus, after all other treatments we tried before it were exhausted.  1,000 days ago I had come out of a five-year, Rituxan-induced remission, and was facing the likelihood of an early disability retirement.  Those were rough days, things were getting worse by the week, and I felt absolutely physically miserable most the time.  But, I was not in despair!  The joy of the Lord was my strength, and my daily walk in dependence upon Him helped me keep personal peace, patience and hope.

thDUFBUKJN

August 24, 2011

1,000 days ago, my joints were swollen constantly, my CNS symptoms were lasting all day long some days, I was increasing unable to manage my work, had significant cognitive difficulty with memory, problem solving, logical thinking, written business communication, and managing my government law office.  I was in an unending siege of bone-tired fatigue.  Mouth and nasal ulcers were almost constant, and my health was a wreck.  I was in the middle of a long, slow, unremitted lupus flare.

While trying to keep up with my job, I was struggling.  I was using up all my sick leave, plus using all my vacation leave in lieu of sick leave, and occasionally had to take a few days off without pay to deal with Lupus.  It was a rugged ride and a very challenging adventure!

Lupus status on day 1,001

untitled (9)

Benlysta after 1,000 days

Gradually after beginning Benlysta, my Lupus problems began to lessen and then become generally well controlled.  I still have bad mornings, but now rarely have to take more than a half-day off due to lupus.  I continually have a modest balance left of my monthly sick leave accrual, and have not had to dip into other types of leave for lupus-related work absences in over a year or so.  Although I don’t feel like my health is “amazing,” most days I feel generally well and handle my daily responsibilities.

Benlysta is expensive, there is no question, and it cost my employer between $8,000 and $13,000 each month, an annual total of about $100,000 for each of the first two years.  A few months ago, my new doctor learned from representatives at GlaxoSmithKline that I was the only patient receiving Benlysta at a hospital.  They told her I was “famous” to them because of this unusual requirement, and that they all knew immediately who I was when she started describing me and began discussing my case.  I thought that was a little bit spooky!

The first two years of Benlysta cost more than double my current annual cost that my insurance pays now for infusions at my doctor’s office.  Only after leaving my previous out-of-network rheumatologist, it was revealed that the insurance-imposed hospital infusion requirement was strictly because my rheumatologist was an out-of-network doctor.  Now, with my new in-network rheumatologist, the average monthly cost to my self-insured employer is only $3,500, and my cost is an affordable $35 co-pay.

thWXDVYBAY

Thankful for Benlysta

I am thankful that because of Benlysta, a premature end and early medical retirement from my career was averted narrowly .  This month, I finally reached full retirement age based on years of service and age, and now qualify for my full government pension.  Now, if for some reason I need to suddenly stop working for health reasons, my full pension is available to support me through life’s next chapter.

My hope is to work at least about 18 months longer, when my retirement percentage formula will reach the last higher level pay adjustment before reaching age 63. I plan to be out and about enjoying new lupus adventures before that age!

 

 

%d bloggers like this: