Sarah Arnold Nelson Writes

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Sarah Arnold Nelson Writes

Sarah Arnold Nelson is writing a book on practical steps when battling with chronic illness, pain, and loss for Christians.

09/13/2026

August (and the first part of September) kicked my butt. I tried a new medication at the beginning of August and a new one-week protocol mid-August.

My body violently reacted to both.

On an average month, I have 12 crash days. (My “functional”/good days mean I can “furniture surf” around our little house. They’re not normal people functional days. Still a heck of a lot better than crash days.)

In August, I had 25 crash days. Twenty-five.

That’s 25 days that I survive rather than live.

A week ago, I was in the hospital getting IV antibiotics for a kidney infection. I have multiple infections being treated. My super low blood pressure is suddenly high. My whole body basically went offline reacting to the meds.

The meds and protocol have been nixed. The heat is starting to calm down. My doctor and I are hoping the rest of September is calm and my body comes back into alignment. (Or as much alignment as it can possible. My body is like a Mazda that got t-boned. The frame is all out of whack and the chassis are kaput but I’m still driving it the best I can.)

As I wait for my body to calm down, I’m pretending it’s fall-fall. We had potato soup and Cheddar Bay Biscuits for dinner last night. Pumpkin-something is happening soon.

I’m fixating on what good thing is coming up next. Right now, that is cool evenings when I can sit on our deck with Charlie and watch the sunset over the trees.

In the midst of agonizing days, there’s always something to look forward to even if it’s as simple as biscuits and autumn sunsets.

08/18/2026

Today, I received a copy of the report from my social security disability exam last month. The examiner concluded his report with, “I have reservations on the motivational efforts displayed in the entire encounter.”

I cannot adequately convey the anger, hurt, and frustration that evokes.

Apparently, I’m making it all up.

If I’m approved for Social Security Disability, it will mean about $1,300 a month.

That’s it.*

No lottery money here.

That’s not even a rent payment.

This stranger who briefly moved my body around, hurled questions at my stressed brain, and skimmed through over four years of medical records, gets to help decide if I should get this pittance.

A pittance I need.

There are so many aspects of disability I hate. But the loss of dignity is absolutely the worst aspect. Using limited energy to try to get the help I need.

Strangers and acquaintances alike get to pass judgment on whether I’m “really” disabled.

Or if I just tried x, y, or z, I’d be all better. As if I haven’t tried just about everything anyone ever suggested.

They don’t see that I rested for days to be able to see them and will suffer for days after because I did.

That’s it. That’s my rant. I miss dignity.

I worked so hard to earn my place in the world. And now all of that hard work is undone. I’m just a tired woman in a wheelchair with questionable “motivational efforts.”

The number one cause of death among people with Myalgic Encephalomyelitis - the form my Long COVID has taken - is su***de.

I’m not suicidal, but I get it. It’s hard to live without dignity. It’s hard to live being treated as a faker who is a drain on society.

Image: My cat, Rose, curled up next me.

*I will also qualify for Medicare which is accepted by more of the specialists I need to see than Medicaid.

08/08/2026

Today is Severe ME Day. A day to remember the 25% of people with ME who live life in bed in quiet darkness. I lived that way for over 3 years. I am far from recovered but I am no longer in the Dark Quiet all the time. (Praise be to God!)

I haven’t been able to go outside much as I continue to recover from my Social Security Comprehensive Medical Exam last week. Charlie brought in flowers from our garden so I could have some of the summer beauty inside with me.

I realized after I took the picture that it includes medication bottles, coffee, and my crochet bag. It seems appropriate.

I’m still here. My world is smaller but I’m still
here.

08/01/2026

I had my Social Security comprehensive exam yesterday.

Physical exertion ✅
Emotional exertion ✅

Crash 💥 goes the Sarah!

I use a Visible band to help me pace my energy. (Think of it like Weight Watchers points but for energy instead of calories.) I’ve gone over my points today while laying in bed. My exertion notice is going off when I turn over. Existing is taxing at the moment.

What’s inaccurate with the wicked stepmother picture? I’m laying rather than upright. Other than that, it’s pretty spot on. 😂

Praying this crash doesn’t last too long. Again.

Credit to

07/18/2026

I’m still wide awake at 1:30am. Pain will do that. It’s one of those nights where the pain meds don’t touch the pain. I know if I drug myself to sleep, I’ll have nightmares as my subconscious tries to explain the pain.

Today was my Social Security Disability psych exam. It was stressful going into it. Stressful laying all of my deficits on the table. Stressful when Charlie, my husband, explained to me after that the reason the appointment didn’t last as long as I’d anticipated is because I failed the “go until they fail” test fairly quickly.

I had been so wrapped up in how stressful it was for me, I didn’t consider the impact on Charlie. We stopped to get a “We survived!” celebratory Diet Cherry Limeaid at Sonic on the way home. Charlie went in the bathroom to vomit. I felt relief; he needed to puke the stress out before he could feel relief. It’s a reminder that disability never affects just the disabled person.

As is my body’s pattern, I ventured out today and therefore must be punished. My legs feel like I’ve run a marathon without training. My chest feels like a small but hefty human is sitting on it; I can breathe but it hurts. The neuropathy in my feet and arms and face is thrumming, throbbing, and burning.

I want to go to sleep early so I can get up early and go outside before it’s 80f. Have yet to succeed this week. Right now, I’m just praying my body lets me safely go to sleep before it hits 80f.

I’m thinking about my friends who can’t sleep, whether due to disability or to grief. I stop and say a prayer. It is comforting to know that God is up, too.

Photo Comment: On a side note, God brought us two precious cats to brighten and bring comfort to our days. In the photo, Rose has curled up beside me and gone to sleep. In her sleep, she reached out and laid a paw on my arm.

07/04/2026

*Chosen* Focus today: Gratitude

What my mind *wants* to focus on: Everything I can’t do.

This may sound like I keep saying the same thing to you. It’s because I have to keep saying the same thing to me.

Like a toddler, my brain keeps needing to be redirected to the thoughts and activities that will serve me and honor God.

It is the 250th anniversary of our nation. There is much to celebrate! I live next to one of the biggest military bases in the continental US. There are so many great things to see and do. Our neighbors are having a cookout. It would be a great opportunity to meet them. Chances are, the heat and activity would be too much for me.

HOWEVER (which was one of the Apostle Paul’s favorite words for a reason!), I have much to be grateful for. I will get to spend some time with family, eating our traditional 4th of July fare, pondering Heaven.

I have dual citizenship: US citizen and citizen of Heaven. Psalm 84:11 says, “For the Lord God is a sun and shield; The Lord gives grace and glory; No good thing does He withhold from those who walk uprightly.”

Today, I need the gift of grace.

I commit to walk uprightly before Him.

Even if I can’t watch fireworks displays at the waterfront today, I believe there will be some fantastic fireworks in Heaven.

In the meantime, I’m going to call a couple of people and tell them I love them. Then I’m going to spend time with my family.

Tomorrow will suck as my nervous system recovers from the socialization and activity. In the meantime, I’m going to choose to enjoy the blessings I have access to today.

06/29/2026

I ignore my pain as much as possible. One indication it’s going to be a bad pain day (can’t ignore): I can’t unlock my apps with Face ID because my face is all scrunched up. 😂

06/16/2026

The weather is changing. With the advent of summer has come ticks and mosquitoes. I’ve just realized that mosquito bites set off my MCAS which results in full body itching. I’m pretty sure my crash last week was due to a tick bite. My body filtered all of my limited energy into an immune response. I used to get welts. Now I get stuck in bed for days.

I am now at war with ticks and mosquitoes. If you have any ideas for ridding the world of them, let me know. I’m in.

Note: To those who would say DEET is terrible for your skin, I would response, “Yes, and so is not being able to eat red meat. I am not contracting Alpha Gal on top of everything else!”

05/30/2026

I don’t know who created this chart but it has me laughing. I can identify with all of the options!

Yesterday, I had to use the computer to deal with paperwork. (The powers that be don’t care if you are disabled. You must document!) As a result, today my migraine has spiked and it feels like someone is trying to poke my eyes into my skull. Although other things escalate my migraine, using the computer is a constant cause-and-effect. I have no idea how I worked as long as I did!

Because Myalgic Encephalomyelitis involves pain and inflammation of the brain and spinal cord, it affects every system in the body. My migraines are one of many issues that “flare.”

Dynamic disability is ironic because the most important thing for the disabled person is stasis. But as we know, there is no such thing in life as stasis!

My brain is scattered so I hope this made sense. Choose joy today, even if computer screens and barometric pressure changes are evil.

05/29/2026

Tired and exhausted. Two different words. They sound like they mean the same thing but they don’t.

Tired means you have run down your reserves. There is satisfaction in being tired. There is contentment in crawling under the covers after a long day of accomplishment. “Today, I DID something.”

Exhaustion means depletion. Being without reserves. It’s like having an old phone that won’t hold a charge. You wake up as depleted as you go to sleep. Sleep no longer charges your battery. You rest without renewal.

Myalgic Encephalomyelitis robs you of so many things. One of those things is being tired. Of working hard, accomplishing much. Of seizing the day.

I miss being tired.

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