Caught without my helpful spend-a-night bag

Lupus attacked me in an entirely different way this year. How did I respond? You guessed it: I rushed to get an urgent, same-day visit with a specialist, then sprinted to the emergency room when the pain kept shifting and didn’t respond to any treatment I had at home.

Why was this new pain happening, sending me to the hospital within the first eight weeks of the new year? Because lupus loves a good switch-up.

I wasn’t ready to go, though, and I was upset with myself for it. I’d gotten into the rhythm of survivable flares: the ones that take you to the brink but temper before breaking you, or those with unexpected symptoms that still fall within a spectrum you know how to manage with a mix of medicines and holistic treatments. These are the flares you, unfortunately, “survive” regularly and spend weeks recovering from.

But this new flare hit my heart and strength in a way I couldn’t describe. The fatigue, leg pain, and sky-high blood pressure were on an entirely different scale. I needed help, and I was not ready.

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If you’ve ever been told to “stay ready so you don’t have to get ready,” here’s another testament to its value. While I debated which specialist to see first, which had the lowest copay and fastest response, whether I’d done “enough” to manage the flare at home, and if a trip to the ER would put me at risk for the flu, it hit me: I was not ready to go to the hospital. I had nothing packed if I were admitted, and nothing packed to stay with a caregiver. Yet staying home was no longer an option.

I’d gone more than a year — wow — without overnight hospital stays. I’d even rearranged my travel bags and small suitcases to fit the life of someone reclaiming physical independence, even in a new surveillance state. (See my previous column for an explanation of this.) But when this unprecedented flare hit, I had to recall all of my strategies for surviving high lupus activity. As the pain intensified, I couldn’t just grab a prepared bag from the top of the closet like my family and I used to do. Now, I had to get ready.

I wished I’d saved a list of items I once kept packed or sent a copy to family so they could quickly gather everything into a “spend-a-night bag.” This would help whether I was headed to the hospital or staying with family or caregivers. So I’m writing down that list here for future reference. It includes:

• Medicines (current and clearly labeled), tea packets, and a heating pad.
• Clothing, including loose, two-piece outfits, two dresses with pockets, socks, a decorative scarf or tignon, and a soft sweater. Don’t pack favorite items, as they’ll stay in the spend-a-night bag indefinitely.
• Toiletries, such as a small towel, soap, ointments, coconut oil, lotion, and disinfectant wipes.
• Entertainment like paperback novels (comedy, romcoms, and other lighthearted stuff), coloring books, and colored pencils.
• Paperwork, including a summary of my most recent doctor’s appointment; my diagnoses and treatments; and a small notebook, pencil, and pen to track changes or write questions for doctors and nurses during the night.
• Electronics such as a phone wall charger, portable charger, inexpensive wired earphones, an analog watch, the Libby app, and a binaural beats playlist installed on my phone.

If you’re in a similar predicament, get your bag ready, tell your family where it is, and celebrate with me every night that you don’t have to use it.

What else would you keep in your spend-a-night bag? Please share in the comments below. 

Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to lupus.