In Sickness and In Health

Humor In Chaos

Searching for Joy

In Sickness and In Health

James 1:2-4 is my definition of Humor In Chaos, my online identity and go-to phrase that keeps me moving forward when times are tough. Count it all joy, my brethren, when you meet various trials, for you know that the testing of your faith produces steadfastness. And let steadfastness have its full effect, that you may be perfect and complete, lacking in nothing.

James is my reminder that silver linings can be found or created.

I formed my Humor In Chaos logo gradually as a theme for my writings in my mid 40s when I was in a major lupus flare. I kept bleeding out. I wasn’t allowed to do anything for fear I would bump something or accidentally get a cut. I had an issue with keeping platelets in my circulatory system for proper clotting. And the platelets I had were sticky as hell, so I was also at risk of getting a blood clot at the same time. I spent the better part of eight years mostly in bed or on the couch. Boring!

Somewhere in the middle of that lupus battle, I started reflecting on all I had been through up to that point. It wasn’t pretty.

I have the genetic traits for lupus. Massive amounts of stress turned them on and made me so sick. The lupus flare that developed in my 40s was dramatically worse than all the previous ones I had throughout my life. That flare got me a proper diagnosis.

A little history on my lupus: I probably had it since I was in my mid-teens or so. When playing basketball in junior high, I was amazed at how my friends could keep running up and down the court without collapsing. I thought the burning feelings in my limbs were typical of everyone. It wasn’t until I was finally diagnosed when I was 42 that I realized they were not.

My first major flare happened during the summer I was 17 and working three jobs: walking beans in the fields in the mornings, babysitting in the afternoons, and working in the back room of a convenience store frying up chicken and cleaning the floors in the evenings. On one of my few evenings off, I went home and collapsed after one ride at a county fair.

I had a flair when I was 22 when I had my oldest child. I developed a nasty case of pre-eclampsia and was put into a medical semi-comatose state during delivery. I don’t remember the day my son was born nor the following day at all even though I have photos proving I did hold my baby. My husband lovingly placed him in my arms.

I got sick having my other two children too, but not as bad, and my third was adopted. Food poisoning prompted that flare. I was sick for weeks after the food poisoning was gone. Doctor then had no explanation why I wasn’t getting better.

There were a few miscarriages. Complaints of aches and pains and fatigue that doctors chocked up to early menopause or perimenopause. It was neither.

I felt pretty good for the rest of my 30s. Towards the end of that decade, we encountered numerous episodes of betrayal from some people we considered family and friends. Most of whom are no longer in our lives. Anywhere from basic damage from gossip to sexual assaults and other criminal activities against us. The legal system got involved. I am not going to go into details. These are not only my stories. They belong to others I love, too. We did prevail, but by the end of my 30s, the stage was set for my lupus to wake up in the most severe way yet. We had no clue anything so potentially dangerous was wrong with me.

Even though we prevailed, it was not without enemies. There was harassment and judgments from people who had no clue about the truth. My children had wonderful teachers, family, and friends who supported them, but they still suffered as a result of other people’s bad actions. Grades dropped. Some risk taking was happening. A little too risky. It was time to move and start over – shortly after the housing market bubble of 2008. We moved from Minnesota and sold my dream home my husband built for me and our family and headed to California in 2010. We lost our financial shirts in the process. Financial stress on top of everything else was a recipe for disaster.

My husband was severely damaged by the events that happened in Minnesota. Some of the people who traumatized us were members of his family of origin. People he loved and trusted. We all did. Before I married him, I thought I had vetted them all. I was wrong. There were certain members who had serious personality traits. Dangerous to the point of criminal.

My husband at the time was a warrior throughout. He stood between me and our children and the people intent on harming and controlling us. He stood up for others in his wider family who had been hurt by the same bad actors in the years previous we didn’t know about until we came forward. He was a champion, our proverbial hero. I knew he was hurting and did the best I could to be a stalwart for him and the kids while I too was hurting. And I was scared.

California was a refuge. Peace was found in the sunshine. For about a year. And then, I got sick, worse than ever before.

I was out for a bike ride, as I did most days for exercise and to clear my head from ruminating on past events, when I got hit with the worst headache I ever had. It was nasty. I slowly made my way home to my bed with both acetaminophen and ibuprofen. That was how I treated most migraines, which turned out to not be migraines at all. I went to bed and woke up with the same headache the next morning. I asked my husband to take me to urgent care where a physician assistant sent me to the emergency room. He thought I had a brain tumor. Scans and other tests couldn’t find a tumor.

Lab tests did find that I had almost no platelets in my blood. They repeatedly tested me while pumping bags of steroids into my body. That was the start of my intense physical pain. I didn’t have intense physical pain to the level of 10 on the pain scale until the steroids, and that pain hasn’t left me since even though I haven’t taken steroids for years now. Thankfully, it hovers between two and seven which is manageable.

They sent me home with the statement, “You don’t have lupus, but you do have two blood disorders. Is someone trying to poison you?”

Poison me? Do you have any idea how it feels to have that question thrown at you out of the blue? It’s terrifying. I thought about people from Minnesota and thought, no way that could be happening. Not way out here in California.

No, I don’t think anyone was trying to poison me. But the thought added to my already over-the-top stress levels. Cause I could list people who would if they had the chance.

I got better after a few weeks, and the doctors said it was acute. No, it wasn’t.

We needed to get caught up on bills. The kids were doing great. After years of being a stay-at-home mom, which I loved, it was time for me to go back to work.

I found a job quickly. I have a college degree and did work some jobs here and there over the years as needed to catch up when money was tight. I had good references. It was a good job with clear prospects for upward mobility. They recognized my writing abilities quickly and wanted to take advantage.

And then it happened. I got sick again. Worse. Pain increased, and I started filling up the toilet with blood. Back to the doctors who sent me to specialists, and lots of blood draws. They tested me for everything under the sun.

The rheumatologist sat my husband and I down to discuss the diagnosis. They knew what it was. The doctors in the hospital were wrong. I had lupus. Severe. No tell-tale rash on my face or minor aches and pains like a lot of people associate with it. It’s in my blood. Blood is life.

As the doctor went through the diagnostic check-list, this outrageous roar grew in my head like the ocean had poured itself into my skull, and it was pounding my brain like a hurricane. About half-way through the appointment, I couldn’t hear a word anyone was saying.

We went straight into treatments. We went to church for prayers, which came like crazy. People in our church community we barely knew stepped up and brought food and inquired about my well-being often. The kids were back to dealing with trauma. And my husband was yet again, a warrior.

He was fucking amazing! He stepped up to the plate. And he had admirers everywhere for his ability to step in and take over where I fell short. He was a hero. A man of honor.

It took years. And adding to my list of chronic illnesses came degenerative disk disease as a lupus side effect from all the times I wasn’t allowed to move. I gained a lot of weight from lack of exercise and lots of steroids. I was on low dose chemo weekly for years. My hair was falling out. I vomited. I bled. I lost the ability to think clearly. I had days when taking a shower was a huge accomplishment. I missed numerous events for my kids. It was depressing. I was so grateful I wasn’t in the battle alone. He was always there handling everything and holding my hand.

I had two major surgeries including back surgery where they opened me up all the way from front to back. I bled out during both surgeries, especially the back surgery. My health was a huge challenge that lasted from 2012 to 2020. A handful of times, I did not believe I was going to survive.

But I did it! I made it to remission! And that’s when I discovered my husband was not with me nearly as much as I believed.

The worst day of my life was when my hero abandoned me. All the other things I endured did not add up to the pain of that moment as he drove away. I was crushed to fine powder. My only path to survival was Christ and the Catholic Church.

And this is where my journey to retrieving joy begins.

Thanks for reading!

Sarah

Humor In Chaos

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