One Patient's Positive Perspectives

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.


Comments on: "Lupus, work, pain and joy in my unintentional career" (5)

  1. I’m also working full time in an IT company. It’s sometimes hard given the stress IT gives but the thing is, I need to work, else, I’ll end up worse since I won’t be able to take care of myself. Sometimes, it’s hard to get up and work, but I’m thankful that I’m allowed to work from home. there are still some challenges esp now that things worsened for me regarding my Lupus, but i know i have to keep working.
    Working keeps me balanced though. It’s one of those things that keeps my mind of Lupus for a while. Although of course when i do too much, it has a way of telling me. LOL.
    Having work and lupus makes us stronger i think, may not be in a physical way, but inside. 🙂
    Godd luck to us. 🙂

  2. I can relate to your working in a law office while you were hurting. I also worked in several law offices as a “temp” to “perm” position. I got up every morning at 5:30 AM, so i could soak in a tub of hot water to help ease the stiffness in my joints. Then I had to eat breakfast so i could take the handful of medicines that made me wonder if they were really helping at all. The job(s) required me to be in my chair at 8:00 AM and the work-place was very busy. I found that concentrating on the legal documents on my computer screen helped me tune out the nagging pain, at least a bit. I got carpal tunnel and had to wear wrist braces while I was working for a hospital legal department. Also while doing medical transcriptions.
    I retired ten years ago and am now writing novels, something I have always wanted to do. They are all published by Vanilla Heart Publishing, and I am working on sequels to a couple of my novels. Also wrote a book on lu”The Cards We’re Dealt” and available on Looking back at my working years while dealing with unresolved pain, I have to state that we’re tough cookies. All of us.

    • Marilyn, thank you so much for sharing your similar experience. Sometimes the work can truly be a blessing in disguise by giving us somethimg else to focus on. I will check out your book on Amazon! Have an awesome day. LA 🙂

    • i always wanted to write! lol. may try writing… next time. lol. 🙂

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