Lupus, work, pain and joy in my unintentional career

working with lupus was my only option

Working full-time with lupus was inevitably my only option, but in the beginning lupus was a yet unknown issue and I planned to be a stay-home mom.  Early in our marriage was I able to stay home for the years after each of our two children were born.  Much of that time, my husband worked two jobs and reduced his college classes so that I could spend those precious few early months nurturing our babies.  While I was home with our children, I was able to work for a tailor and did alterations at home that bolstered our budget.

We expected that after college, I would be able to continue to stay home until our children went to school.  Things were working out, and we reached a point where we had a modest $10,000 in savings, and put a down payment on a house.  During the month we were waiting for our house purchase to close, our lives took a sudden drastic turn in another direction.

more than house we almost bought

Suddenly, my husband’s asthma flared and became life threatening, and he was hospitalized for several lengthy stays over the next couple of years.  After the first one, we contacted the realtor, and withdrew our offer on the house and started making good faith payments to the hospital, doctors, labs, specialists, radiologists, etc.  Our savings didn’t even touch the mounting bills and was soon gone.  We had health insurance, but it only covered 60% of my husband’s hospital expenses, so before long our medical debts totaled more than the whole price of the house we almost bought.

a poster child for wearing a seal belt

About this time, we had a horrible car accident one July Sunday afternoon on the way home from church.  I became the “poster child” for wearing a seat belt!  Just before the accident, I had unbuckled to take off the little white jacket I had on over my sun dress, and then folded it up on the seat next to me.  Then, as I was reaching for the seat belt to buckle up again, our car broadsided a large sedan in the middle of the intersection.

head-first into the windshield

No one else was hurt very badly, but I flew head first into the windshield and had a whopping concussion, damage in three cervical spine disks, cuts on my face and bruises from head to foot. After the accident, I had numbness in my legs, intense pain in my spine and overwhelming migraines, along with some rocky post-concussion symptoms. I couldn’t hold my neck in a bent position to sew, so had to quit my home tailoring job.  Around that time, my husband suddenly lost his main job.  His health had reached a point of severity that caused severe asthma attacks after mild activity like walking through our apartment.

friends carrying bags of food

To say this was a low point would be exaggerating!  Yet, there were many blessings during these times, too.  We were still living on campus at the college in a small apartment for married students, and our rent, utilities and water were all rolled up into a modest affordable monthly payment.  My in-laws owned a grocery store and brought us boxes filled with meat and groceries each time they came to visit.  Friends showed up at our front door countess times carrying bags full of food.  We were very blessed to receive generous honorariums after we were invited to do a couple of musical concerts at local churches.  The check after the second concert was just enough to pay two month’s rent in advance, and left enough money in our account for about two weeks worth of gas.

We sat down and looked at each other and had a very important conversation, and prayed together about our financial situation.  We mulled over the high priority we both held for my husband to get his degree finished.  We considered his health was not extremely reliable right then.  We thought that even if he could find another job soon (it had been six weeks already of pavement pounding,) his likelihood of  getting sick again was still extremely high.

searching for jobs

Although I had mild arthritis then  (from as yet undiagnosed lupus) and still had intense pain from the accident, I was the healthier one of the two of us.  I couldn’t stand the idea of sitting at home, staring at the four walls of the apartment trying cope with the pain.  I needed a huge mental distraction!  After much deliberation, we decided my husband needed to stay on course and finish school.  We planned to hire a sitter for just the hours he was in classes, and he would study at home with the kids during the rest of the day, and I would out and look for a job.

We sat down together and scoured the want ads to find jobs we thought I could do.  I had a good well-rounded fine arts education, had worked in a hardware store in high school and the library at both colleges I attended, and had done a brief stint in public relations.  I had been the church secretary for two years between the birth of our two children.  Not much to put on a résumé, so we selected places for me to apply where I could drop off the applications, since we figured I might make a better impression in person than on paper.

riding the bus to work

My husband helped me carefully map out each day’s job hunting for the most efficient route to conserve gas.  After two weeks and several interviews, I was offered a job as a paralegal trainee at a downtown law firm.  We were so excited, and saw this as an answer to our prayers and our needs.  I was able to take the bus to work, and we were grateful that our gas and remaining funds lasted just until my first paycheck came in.

Although I was hurting intensely from the accident, I could still think, and found that going to work and focusing mentally on the cases was an excellent distraction from the pain.  We lived right on the bus route, so, I got up every morning at dawn to ride the bus for over an hour to get to physical therapy and neuro-rehab at 7:30 a.m. at a hospital by my office.  I started work an hour later each morning, and for the next two years, I was in physical therapy and neuro-rehab for my spine every day at first, and then slowly tapered down to once or twice  each week.  At night, I often reviewed cases for an hour commuting home on the bus until sunset, when it finally reached the stop in front of our apartment.

studying law books on the bus

Over the next a half-dozen years, I studied law books on the bus and worked in three firms as a paralegal before taking my current long-term job in a government law office.  Each of the four law offices I worked in brought diverse experiences in different types of law, with increasing pay and better health insurance benefits.  The health insurance helped us pay for the medications and specialists that stabilized my husband’s health and saved his life. By the time our children went to grade school, my husband had finished college, but for a few more years, his asthma was still extremely life-threatening.

Eventually, my husband was strong enough to get back to work, but for the several years that passed before that, my paychecks kept a roof over our heads and shoes on our children’s feet.  It took seven years, but without declaring bankruptcy, we paid off the massive medical bills and got out of debt.  I like to describe that experience as “paying off a house without having a house.”  We were just thankful to have the means to meet our obligations.

lupus gradually worsened

Over the next few years, my lupus gradually worsened, and my husband’s health improved.  Our health situations became somewhat reversed.  New asthma medications came on the market that radically controlled the severity of his asthma and he became “the healthy one.”  We have been grateful throughout the past twenty years that the government lawyers I work for have always made outstanding accommodation for my lupus, and helped make it possible for me to continue in my job successfully.

I guess, there are several reasons I continued working: I like my extremely rewarding job, I need a paycheck, we need health insurance and prescription coverage, I have a public service retirement and can boast about an amazing team of co-workers.

inherited asthma

My children are now grown, but one of them and one of my grandchildren have the asthma they inherited from my husband.  We are both thankful for a new day in medicine, and for today’s drugs that control the severity of both asthma and lupus, and make a life-saving and career-saving difference for my husband, me and the millions of others with these chronic diseases.  We are thankful for the employers who provided the insurance we needed to be able to afford our doctors and medications.

Now, the Benlysta infusions I receive for my lupus costs my self-insured government employer more each year than what they pay me in salary.  I am a grateful employee!  Right now, I often think about the fact that I really have to keep working to keep getting my infusions.  The jury is still not “in” about biologic drugs for lupus, and how coverage for it will fare in in what medicare, retirement health insurance plans, etc. will pay.

working with pain strengthened me

It was difficult when I was younger to go to work every morning when my lupus caused high levels of pain.  But, going to work with pain toughened me up.  I was motivated by the knowledge that was providing for three people I love who were counting on me, because at that time in our lives, they could not make it on their own.  Yes, it required sacrifice, but I would do it all over again in a heartbeat.  God provided the means and the gumption I needed to go to work in pain.  When I asked for His strength to sustain and support me, He daily answered my  prayer.  When lupus worsened and caused daily physical pain, the means of coping was already established because of what I had learned from coping with the results of my accident.

Over the years, I learned that I could get up and be productive, despite how I felt. In the midst of the hardest moments, I have usually remembered to ask God for his help and for him to loan me a drop of His strength. I have learned over the years that joy in life does not have to depend on how you feel physically.  Feeling good is helpful, but it doesn’t have to be the thing that determines fulfillment and deep joy.

using the retirement fund

Someday soon, I hope to be able to stop working and draw on the retirement fund we have built up over the last couple of decades.   Then, I hope to work part-time teaching music.  From the beginning of my “unintentional career,” working with my lupus was the only option.

As my lupus became more severe, and my health benefits got better, I did the math.  I also continued working to continue the means to pay for the medicines that keep my husband and me healthy  enough to keep working and living.

Coping with Lupus: Fact #14 – Balanced Exercise and Rest Maintains Strength

Coping with Lupus: People with lupus are usually encouraged to engage in appropriate daily exercise to keep up muscle and bone strength.  Exercise is not intuitive for those with auto-immune health challenges like lupus, rheumatoid arthritis or fibromyalgia.  Waking up each morning with joint stiffness and pain, the first thought on my mind is definitely NOT exercise!

My natural inclination is a long hot tub bath or jacuzzi soak to wrap warm comfort around  aching joints, or perhaps sipping coffee in bed while waiting for analgesic and morning prednisone medications to “kick in.”

Are you kidding?

Exercise?  Are you kidding?

Yes, our doctors all tell us (and everyone without auto-immune disease, too) to exercise!  Why is the idea so repugnant to us?  Simply because we hurt!  The idea of moving and getting up to shake up painful joints is simply counter-intuitive.  We can’t imagine that when moving hurts, doing more of it will make us hurt less.  But, the truth is that moving gently and getting some mild exercise WILL help manage and relieve pain.  Trust me, believe your doctor, and if you are not getting any or enough gentle exercise, I urge you to consider starting.

With a membership in a health club, I could swim in an indoor pool — it was invigorating!  Some days, I work through some simple yoga exercises that help stimulate my deep breathing and encourage circulation in joints, tendons and cartilage using gentle controlled movement and balance — it is refreshing!  Other days, I get on my bike, with its rear wheel nestled in its indoor fluid trainer stand (a normal exercise bicycle works well, too) and spin for as few as ten or as many as 30 minutes – it is strength-building!

What about when I hurt?

What about the bad days?

On days I hurt the worst, I do just a few minutes of the simplest yoga moves or spin on the bike for no more than 10 minutes.  The goal is just to stir up a little circulation and get my joints in motion, and to stir up a little adrenaline to get me feeling like moving.  Almost always, the gentle movement results in a lowering of my perceived level of pain, and puts my body into a more energetic state.

With a little more adrenaline flowing, and a natural rise in body endorphin levels, my ability to handle the pain increases, and my perception of the pain decreases.  It’s just the biology of movement, nothing more.  This is the effect of exercise that is so counter-intuitive to the pain.  You don’t naturally think it will happen when you feel like stilling still, because every motion of your joints hurts.

Balance exercise and rest!

Balancing exercise and rest – remember moderation!

Take care to balance exercise with rest or when you hurt.  Our doctors rightly tell us not to overdo, or to move in ways that cause more pain.  The right amount of exercise, done with moderation and restraint, should help the pain decrease almost immediately when you start moving.  Increasing pain means it is time to stop the exercise.  Caution to take things slowly is always first when thinking about exercise.

It may take a while to build up to enough exercise to get an aerobic effect.  For me, the pain drastically reduces when I reach the aerobic point in my routine.  My breathing deepens, my strength suddenly increases and my pain reduces.  I first learned to find the aerobic point when I went through physical therapy for a damaged shoulder and rotator cuff.

Approaching and crossing aerobic point

Magic of crossing the aerobic point

The therapists used computerized equipment that measured the movements and changes in my strength levels during the routines.  They would point out the moment when the computer registered the rise in my strength, and I could associate it as a point when I experienced a drop in pain.  The bursts of strength would occur several times during the therapy routines, and each time I would feel a little stronger and move more easily.

I sense a response similar to the physical therapy with gentle sustained exercise.  My first sense of the change is usually about 12 to 17 minutes into my cycling.  After that, I feel like going a little faster, and immediately feel a little more energetic.  I usually try to cycle long enough to reach that first point, and push beyond it a little.

Just do it!

Building up, slowly

If I am having a string of days or weeks of quieter lupus, I can build up to about 30 minutes of exercise, never adding more than a minute each day.  Some days, if I am hurting a lot, I slowly cycle for only about 5 – 10 minutes, never pushing speed to a point where pain rises.  Even moving very slowly helps a little!  I cannot remember a time when I didn’t feel at least slightly better after exercise than I did before it.

Try it.  Really!

Lupus and a letter to my younger self

Lupus at sweet 16, but not diagnosed

Lupus at sweet sixteen, but not yet diagnosed.  You don’t know this yet, but in a few years you will be a young wife and mother, and will finally be diagnosed with lupus.  However, you will continue to have mysterious symptoms for another ten years before a doctor finally asks the right questions, and runs the correct blood tests to find the answer to why you are so sick.

In the meantime, please just keep trusting God on the days you feel bad. It is not in your head, you are not a hypochondriac, and some day you will have an answer and proper treatment. Until then, keep focusing on your blessings and hold onto the joy of the Lord in the midst of your rough times. The signs of lupus have already been present for most of your life, but the family doctor you have seen since you were five doesn’t know what to look for.  He has repeatedly tested you for rheumatoid arthritis and diabetes, knowing that your mom’s mother had both, in his attempts to try to find an answer to explain why you have had so many health problems.

Even when you had kidney problems and protein in your urine, he never figured out your recurring childhood “kidney infections” were really lupus. Someday you will understand and need to forgive him for what he doesn’t know.

5 year old feet

Remember when you were five, and your knees and joints became swollen and stiff for weeks, and they tested you over and over for rheumatoid arthritis?  It hurt so much to get up and down out of a chair that you cried, and cried?  They were trying to find lupus, but didn’t know what to do to find it. Not very long after that, you went through months of falling asleep in exhaustion in the middle of the afternoon, and the doctor put you on the diabetes diet, thinking it was blood sugar problems, even though you tested negative for diabetes.  They just didn’t yet suspect lupus!

Then, there was that summer when you were a couple of years older, you started getting round puffy red rashes the size of pennies on your face, arms and neck.  This was a sign of your lupus, too,  but the doctor only could describe it as a sun allergy.  He didn’t know to look for lupus.  Later on, you got more round red rashes on your forearms, and your mother thought they were ringworm.  Then you had deep red swollen patches of rash a couple of years after that all over your neck.  Still, probably more cutaneous lupus discoid rashes.

Later, remember another time when you were unusually exhausted for months, and your mom explained to you that the doctor had done blood tests that revealed you were extremely anemic?  Then, you took sustained release iron tablets for several years before your hemoglobin levels stabilized.  This might have been caused by lupus attacking your blood cells, but we will never know, because they didn’t test for lupus.

Summer after grade school

Later, in the summer after grade school, there were high fevers that made you hallucinate.  The doctors at the hospital never suspected lupus, even after searching in vain for a virus or bacteria they thought was causing the fevers.  Still, no lupus diagnosis.  Afterward, you felt bone-tired fatigue for weeks, and in your school pictures from 7th grade you had deep dark circles under your normally sparkling eyes.  Remember how you hid those awful pictures, because they made you feel like you looked like an old sick woman?

Then, a couple of years ago in middle school, they had another opportunity to find your lupus, but missed that, too.  Your sudden severe case of painful pleurisy in your lungs in the eighth grade should have been a clue for your doctor to suspect lupus.

All the migraines you have had since you were a little girl, and the painful mouth and nose ulcers you have had every few weeks from the time you were five or younger were signs and symptoms of lupus. I hate to tell you that you will have to continue having those oral and nasal ulcers for the rest of your life, every time your lupus gets ready to flare. They will become your early warning sign of another major flare ahead.

In a few years, a doctor will even try testing your recurring nose ulcers for cancer, but will again overlook having the biopsy tested for lupus.  I am so sorry to tell you that it will take a few more years and a couple more doctors before one finally figures out that the ulcers are a sign and symptom of your lupus that will eventually be diagnosed correctly.  It is going to take about ten more years.

Senior year of high school

In a couple of years, during your senior year of high school, you will be very sick from October until March. Your legs will ache, your vocal chords will tighten up and you will have fevers and lung infections. You will miss most of your school classes that fall and winter, and have a six-month long bout with what you doctor will dub a “pneumonic viral syndrome.”  During those months you take scores of antibiotics and other drugs, but continue to get sicker and sicker.  You will have no memory of Thanksgiving or Christmas from that year, and the rest of the time will be a foggy blur in your memory.  During those months you will first experience symptoms of peripheral neuropathy pain and nerve irritation in your legs, and you will lose your voice to laryngitis for several months.  The inability to sing will sadden your young heart and be one of your few lingering memories from that long season of illness.

During your second year of college you will experience a long lupus flare that attacks your central nervous system, and have difficulty for the first time remembering what you study. Midway through the school year, you will experience days of intense confusion and sometimes get lost on campus looking for your classes, and even forget your best friends’ names.  Your forgetfulness will have some rough impacts on several friendships, and neither you nor your friends or family will understand why. This will be a lonely scary time, but when you call out to God to be your anchor, He will remain faithful and give you courage and strength to tough it out.

Don’t be afraid of the uncertain years ahead, for in due time you will be one of the lucky ones.  In your fourth year of college you will meet and marry a wonderful man who suffers from asthma and epilepsy, and because he faces his own health challenges, compassionately understands you are facing an as yet unidentified health foe.  You will both share a deep love of God and music, and two solo singers will blend their lives into an amazing duet.  Before you marry, you talk about understanding when each other have the “gray days” when you feel off par, and know you will be able to encourage each other through them.

Young mother in car accident

Shortly after your two children are born, an answer will soon be in sight.  You will have some spinal injuries in a major car accident when you fly into the windshield, head first, and then go through three years of physical therapy.  In the aftermath of that injury, you body will have a hard time recovering.  Arthritis, tendon and muscle inflammation will become out of control, and eventually, you will have intense pain and immobility.  Some days, your knees will be too painful and weak to climb the stairs to your apartment, and your husband will carry you up the stairs.

Difficult to shop

Then, for days at a time, your hands, legs and feet will have so much swelling and intense pain that you end up sobbing by the end of shopping for groceries.  As the pain gets worse, you are eventually walking like an old woman, hobbling in stiffness and pain with every step.  You and your doctor will not at first understand why all this is happening, along with recurring bouts of round skin rashes, more pleurisy, sinus infections and other cycling issues that will come along the way.  Finally, your doctor will look at you one day and say, “you are too young for this,” and you will in wholehearted agreement exclaim, “I AM too young for this!”  In a moment of insight and inspiration, your doctor orders some blood tests that you have never had done before.

A doctor will finally understand it is lupus

A few days later, in excitement and near glee he will call you in to his office to talk!  You will hear the words, “if I am right, you will be doing hand springs in a few months.”  He won’t tell you what he found, but will send you to a rheumatologist he highly respects.  There will be many, many more tests and eventually you will begin receiving medications to treat you for lupus.

From that point on, your life will not be all smooth sailing, but you will always after that know that you are battling lupus.  Your doctors will make many choices along the way that maximize your health and keep you functioning.  You will be able to avoid disability and work a long successful career in law and government, and have a wonderful and fulfilling life.  You will live to see many decades of marriage, grandchildren and much more beyond.

A part of your journey but not in control!

Lupus will cause you many challenges in the years ahead of you, but it will not defeat you.  Your life will be at times a lupus adventure.  You will become strong and will be a victor, and lupus will just be a part of your life’s journey, unwelcome, but not in control.  Your faith and joy will not fail, you will rejoice in the blessings of life.